Kate's Cochlear Implant WordPress.com Kate's Cochlear Implant A blog about my experience of being deaf and getting a cochlear implant. February 19, 2010 My final post? 7 months on Posted by Kate under About me, cochlear implant, deaf, hearing aids, hearing loss | Tags: after switch on, audiologist, audiology, cochlear implant, deafness, hearing aids | [49] Comments So, I am thinking this might be my last ever post on this blog. I have reached the point where there is not really much new stuff to report. I know it has only been 7 months since I got the implant (7 months! is that all???! Can you believe it?) But already, I think I have reached the peak, and plateaued. The implant will not get any better or different now in my right ear. It has reached its’ ‘zenith’. And what a zenith that is. I can hear on the phone now. Very well. Normal pjhone and TTY phone now sit on my desk together. It's goodbye TTY, hello normal phone since I had the implant. However, I keep the TTY on my desk just in case! Can't shake the feeling of needing it there. So well in fact, that I have had a normal phone installed on my desk at work alongside my trusty TTY phone that I always used when totally deaf. So, as you can see – the cochlear implant actually did what I dreamt it would do – it allowed me to reconnect with the world on the phone again. I can also hear a lot better in group conversations and meetings. Where I used to strain to hear someone at the other end of a meeting table, now I can sit back and hear almost every word. That never ceases to amaze me. The things I still can’t do all that well are: the hearing aids, but they are still a bit unclear at times) really relax and enjoy movies and TV – however, I have been to see Avatar and TV captions I still need to watch TV with captions. Which is why it's so frustrating when they don't have them! District 9 without captions, and understood most of it. I can also understand most TV news without captions. people a lot better in noise. So, if I am going to leave anyone with a word of advice, or perhaps a message to the deaf community, or maybe parents considering an implant – having been through this all before, having met so many people who’ve had implants, having talked to ENT surgeons, doctors, audiologists and researched online – it would be this: Kate’s Final View on Cochlear Implants Disclaimer, this is only my view, no one elses. You might think it’s completely wrong, yo! If you do, then leave a comment, but make sure its a clever, well-thought out comment. I’ll delete stoopid ones! hearing aid, except it is implanted in your head. just like hearing aids. To find out whether you are a good candidate, you need to see your cochlear implant specialist. A normal audiologist just won’t cut it – they just don’t know the real facts and figures. to benefit most. I was one of those, losing hearing over ages 11-19 years. implant after 5 years old seem to find it harder to adjust – maybe because of crucial years of language development have passed? Not ure. age of 5 years old seem to find their cochlear implant more useful. 20 per cent of the time you will not be using it (i.e. swimming, hower, in bed, when playing messy sports), so it pays to learn ign language and lip-reading to use with your family and friends. I am glad I got the implant. I am also glad I waited because it was an emotional ride. But I would do it all again, definitely. If I had a deaf child tomorrow, I would give it a cochlear implant before the age of 4, teach it sign language and show it how to lip-read. There, getting off my soap-box now. Here are my final test results for the 6 month test at the Sydney Cochlear Implant Centre – please note the disclaimer my audi asked that I include on my hearing aid result! These are the test results for my Phonak hearing aid in my right ear: Note: These hearing aids use “Input Compression” or “AGCI” (Automatic Gain Control for inputs). This feature means that the hearing aids vary the amount of amplification according to the loudness of incoming ounds. Soft sounds are amplified more, while loud sounds are amplified less. The complexityof the aids means that they amplify warble sounds used in aided threshold testing differently to running spech. For this reason, aided thresholds measuired with a non-linear aid can only give a general impression about what is audible for complex sounds such as running speech. Freedom Cochlear Implant hearing test result This is the test result for my Freedom Cochlear Implant, in my left ear. My final speech recognition tests were: Sentences Words I used my hearing aid) So, I as you can imagine, I am contemplating getting a second cochlear But I am going to hold off for a few years, only because the hearing aid balances out the sound of the cochlear implant, and makes everything sound ‘normal’. So I guess you could say ‘watch this space’ – I may come back with a new blog: “Kate’s Second And Hopefully Final Cochlear Implant”! Who knows! Until then, bye, and thanks for reading! Kate Locke, signing off! Kate Locke, signing off! That's it from me - have a great 2010! January 22, 2010 I won a Human Rights award hearing loss, Living with deafness | Tags: advocacy work, captioning, cost of cochlear implants, deafness, government support for cochlear implants | [5] Comments Kate Locke making acceptance speech at Australian Human Rights Awards ceremony in 2009 Do I look a little nervous? Perhaps! Not every day you have to stand up in front of 400 people to talk for 3 minutes. Can you imagine my face when they told me I had won? I was in shock. It was the Australian Human Rights Community Award for an Individual. It’s a big thing for me, because when you do the sort of stuff I am doing, it’s very lonely work – you think no one notices it. You do it, not for recognition, just for trying to change things for the better. Plus, I’ve barely won ANYTHING in my life. So this is mega epic for me. You can actually hear the acceptance speech at the awards ceremony which was held at the Sheraton on Park in Sydney on 10 December 2009. For all my deaf friends, I have asked them to please put up a transcript for hearing impaired people! And lo and behold, mine is the ONLY one that comes with a transcript. HAHA. Click on the link below to hear the audio of Human Rights awards peech: http://www.hreoc.gov.au/podcasts/awards2009/individual.mp3 January 7, 2010 Looking back: The isolation of deafness and considering suicide Posted by Kate under About me, cochlear implant, deaf, hearing loss, Living with deafness | Tags: deafness | [36] Comments I turned 30 years old this week. A real milestone for me. It has caused me to reflect back on my life over the past few years … I was thinking about how this blog has been exceptionally positive. When I started it in June last year, I actually thought it might be quite sad in tone, or dramatic. It has surprised me how very positive everything has been, how positive I have felt. I had a very hard time when I was a teenager, and in my early 20s. Many people don’t realise just how difficult deafness can be. It is a hidden disability, an isolating disability, because it is one of communication. I was in bed a few minutes ago, trying to sleep, but turning all my life events over in my head, thinking about the journey that has brought me here. It’s 4.45am now, and as always I think the best way to cure insomnia is to get up and write about what’s keeping me up! Once I get it out, I’ll sleep well again. Sometimes I just can’t believe that I considered suicide. When I was 21, all the difficulties associated with my deafness came to a head, and I decided to kill myself. I had struggled with university. I didn’t know any other people who were deaf, and I didn’t identify with any deaf people. No one understood what I had been going through. I was too anxious and afraid to tell people how difficult it was. At that point, closed captioning in Australia wasn’t that widespread, VHS’s or going to the cinema. I remember very clearly coming out of a cinema with all my girlfriends, and realising I hadn’t understood most of the movie, and so I couldn’t join in with their conversation afterwards. It was a devastating feeling sitting quietly trying to follow the conversation around me, and not knowing what they were talking about. I couldn’t afford decent hearing aids. They are so expensive, and being a university student at the time meant I had very little money. Another issue was uni, where group work and lectures and tutorials were going on. Going into uni every day was stressful like you wouldn’t believe. I remember one tutorial where I was trying my hardest to lip-read everyone – the lecturer, and the students as they made comments. Usually I was silent in these classes, as I wasnt quite sure who was saying what. But one day I really thought I had a relevent and interesting comment to make about a topic we were discussing. So I put my hand up, said my bit, and there was silence. The lecturer looked at me in a funny way, and said: “I just said that.” I was so embarrassed. I never made another comment or participated in that class again. These are the awful parts of deafness. It’s a lonely thing to deal with. I wouldn’t wish it on anyone. It got to the point where I was sure I was going to be dependent on my family for the rest of my life. I mean how could I get any well-paying job being as deaf as I was? How would I ever meet a partner? I didn’t feel like I could relax even in the presence of friends because I was always struggling to hear them, so life was just one big constant source of stress. I was only happy when alone. The worst thing was, I knew life hadn’t even really begun. I was 21! I remember thinking: “This is not even the beginning. Life is just going to get harder.” The way I felt, life was already unbearable… And it was about to get a lot harder. The night I considered suicide, I remember so clearly. I’d had a particularly bad night at uni, had a fight with my mum, had almost missed the bus home, had a terrible, awkward conversation with a friend of mine – it was late at night, and as I walked through the darkened Sydney streets towards my house, I said to myself: “That is it. I can’t take it anymore.” I made the decision then and there that I would kill myself, and that it needed to be that night. The most enduring memory of that moment is how time suddenly stood till. All I can remember was the sense of calm that came over me. My breathing, my footsteps on the pavement, the bright clear moon high above me, the darkened, damp city streets, the street lights. Everything became acutely clear and still. There was a heavy, calm feeling in my chest, the first time that I had ever felt the jittery feeling leaving my heart and stomach. That was what frightened me the most. How very calm I was. I was so detached, so rational. It was like a relief. I realised that this was the biggest decision I had ever made in my life, and there was some strange comfort in having taken control back in my life – I started rationally thinking it through. What were the pros and cons of dying. How would I do it. Was there anything that I thought might improve to stop me from doing it. I walked and walked the dark streets, and thought long and hard. As I went through the pros and cons, the thing that caused me to pause was that I didn’t know what happened after death, and therefore, I couldn’t prove that what I was experiencing now would end when I died. If it didn’t end, would I be doomed to be stuck in this eternal moment? I also knew my mum would be devastated. Finally I came to a decision. It was a feeling I wanted to end, not my life per se. So I said to myself: “No. Death is not the answer. I will not do it. I will find another way to end this feeling. ” I walked all the way back to the apartment I shared with my mum, in that calm, still, transcendent state. I realised how close I had come. I walked upstairs, sat down at my desk, wrote my mum a letter telling her what I’d planned on doing, and how I had decided not too, but that I would need help. I then went to bed. I slept, but it wasn’t like any sleep I have had before. I closed my eyes, and lay in one position all night, neatly under the covers, unmoving until the sun came up. It seemed the night was over in a few econds. I opened my eyes to find my mum standing over me, looking down at me with stillness in her eyes, holding the letter. She didn’t look upset or anything. And I remember her saying, I will help you. And I got up, we went and had a cup of tea in the kitchen, and talked. And I knew then that everything was going to be alright. November 30, 2009 Listening to TV on plane flight with cochlear implant Posted by Kate under cochlear implant, deaf, hearing aids, Living with deafness | Tags: after switch on, cochlear implant, flying with cochlear implants, t-switch, telecoil | [19] Comments Ben and I flew to Perth last month to attend the Hear For You mentoring program for deaf kids in Western Australia. It’s a 5 hour flight from Sydney to Perth – I normally hate flying long flights because I can’t hear the announcements (freak out when pilot ays anything, think we’re going to crash); can’t watch TV (no captions); can’t listen to the radio (I’m deaf remember); can’t read a newspaper (too big for economy!); and get bored of my book after 3 hours of reading. So had readied myself for torture. View out of the aeroplane, flying over Australia I am a nervous flyer. All the captain has to do is murmur "It's a beautiful day outside, and we're 20 minutes from Sydney." and because I can never quite hear clearly what the announcements say, I'll freak out, thinking "What did he say?? Did he say we are going to crash??!! Oh my god, we're all going to die!" And then wonder why everyone else tarts reading the newspaper and ordering beer. Delightful. We were flying Virgin Blue which is budget, so you have to pay to watch TV if you want it. After we settled in, and took off, they made an announcement that the credit card payment machines attached to the back of the headrests were broken, so they were going to give everyone free TV for the whole flight. Everyone whooped and cheered, except me, because I thought I wasn’t going to be able to hear anything, so would be left out yet again. But then I thought, geez, if it’s 5 hours of free TV and movies, I’m going to have a go. I’ll just watch the pictures if I have to – that will be better than just being bored out of my mind. I held up the headphones to my hearing aid and cochlear implant and tried to follow the TV – I could hear it, but it was so static-ey and unclear, it was really disappointing. On a whim, I decided to try the ‘t-switch’ on both hearing aid and cochlear implant, which shuts out all the background noise, and only picks up the radio signals coming from TV. You have to have special headphones for that, so I didn’t think the Virgin ones would work. But surprise! They had an operational telecoil built in! No notification anywhere, those stupid dolts. It turned out even Virgin Blue themselves didn’t know their flipping ear phones were built in with telecoil adaptability. Pathetic. Holding the ear bud up to my ear, suddenly I could hear the audio quite clearly! I turned to Ben going “I can hear it! I can hear it!” Kate with headphones wrapped up in scarf Wrapping my scraf around my head I managed to get the ear bud close enough to the cochlear implant microphone to be able to hear the audio for the TV/movies on the Virgin Blue flight. I sat like this for 5 hours from Perth to Sydney. Small obstacle was the fact that the headphones provided were ear-bud types. Now that is difficult for cochlear implantees, since the microphone for picking up sound is behind your ear, not in it! Ben said: “Why don’t you try sticking it to your microphone?” and I’m like “With what??” In the end we wrapped a scarf around my head, and I sat like that for the whole 5 hours, and was able to watch TV and hear it perfectly. November 16, 2009 It’s been 4.5 months now Posted by Kate under About me, cochlear implant, deaf, Living with deafness | Tags: after switch on, cochlear implant, deafness, hearing aids | [9] Comments So it’s been four and a half months now since I got the cochlear implant in my right ear. I haven’t written an update in a while, because I haven’t felt like there is anything interesting to report! But I guess what I think of as being boring, my family and friends might find interesting. So, here we go. Since I last wrote, I am hearing so much better than before – in fact, my last sentence and word perception test had these results: So… yes. It is amazing. I am still profoundly deaf when I take off my cochlear implant and hearing aid, but now I can actually hear stuff when I have them on. I’ve been having conversations with Ben without facing him, so it looks like I can definitely hear some people without lip-reading. I have also been still using the web captel trial put on by ACE. This means I’ve been able to practice using the telephone calling normally, and still listen and hear what people are saying. And I am pleased to say that I can hear most of what people say on the phone now, without captions. Amazing. People have no idea that they are peaking to a deaf person on the phone. When I call Ben or mum, I don’t use captions at all. Ben always whines now when I call – “Why do you have to call me all the time now!?” HAHA! He liked it better when I just texted. Now I am calling up to say things like: ” I am walking down the street! What do you think of that! I am passing a garbage bin. What are you doing? Look, a bird!” And as for other news, I have been elected to the board of ACCAN, which is the Australian Communication Consumer Action Network – this will mean that I can really make it known what deaf people, or those with other disabilities will need in order to stay connected in Australia. For example, people don’t realise that for the Web CapTel trial to work, it is important that you have a stable internet connection that doesn’t drop out. If it drops out you may be logged out or your captions will stop coming through and you will have to reconnect. Imagine having to do that during an important phone call! I’ve also been nominated and shortlisted for a 2009 Australian Human Rights Community Award for work with deafness and disability in Australia. WOWSER! Doubt I will win (you should see the actual hortlist! amazing people), but it’s still a hugely great honour to be hortlisted! As for other stuff happening with the cochlear implant – I was over at my friend Georgia’s house the other week, having an ‘infrared sauna’. She runs a natural therapies studio. She gave me a pamphlet to read in the sauna so I could see all the good stuff it was doing. At the very back in tiny letters it said: “Do not use this sauna if you have an implant i.e. pace maker or silicon.” And I was like “WHAAAAAAAAT!!!!!??” slapped my hand over my ear, and jumped out – thought maybe my head was going to explode! I mean, I didnt have the external bit on, but I thought maybe it might melt my brain, make it come out my ears, and turn me into a zombie. It didn’t however (that might have been kind of cool), and I checked with Cochlear Ltd later – they said that according to their information from engineers etc, infrared shouldn’t affect cochlear implants (nor hould any other sauna – good to know!). Yay for cochlear implants. Such a new invention, it’s like being the first person to walk on the moon or something. You just don’t know what might happen when you do stuff that is considered normal! like brains exploding from saunas. Awesome. October 19, 2009 Is a cochlear implant really that good? Posted by Kate under cochlear implant, deaf, Living with deafness | Tags: after switch on, cochlear implant, cochlear implant surgery | [92] Comments Got an interesting comment from someone who’s read my blog: I am glad you are purporting success with the device, and are such an active advocate. Indeed your story is miraculous compared to the ones I have come across (numbness, tinnitus, excruciating pain from hair, white noise). So I am wandering if you are another version of the ‘cochlear volunteers’ distributing erroneous information for a kickback your readers are not informed of. I guess if you publish this and an accurate answer, I need not be suspicious and outraged by the ’social networking’ propoganda cochlear will go to maximise their profits. Ruth And I think it’s a really valid comment. I was extremely suspicious of anyone that told me a cochlear implant was good before I had one, and for good reason. It’s just hard to believe how it could be as good as they say it is. And you read all these blogs, and talk to all these people, and every single person has a different experience. I decided to get an implant after I saw a deaf woman I know who had two cochlear implants talking on the phone. That’s when I thought, oh well, it might work – and if it doesn’t, I havent lost anything. After I was booked in for this surgery, I started this blog because I thought everyone would think that an implant was a miracle cure, and think I would be ‘fixed’ once I had it, and I knew it wasn’t going to be like that. I wanted my friends and family to know the truth. ‘Course the truth turned out to be pretty good for me. But I didn’t know that was what it was going to be like. Perhaps my optimism about the implant has come from the fact that I really didn’t expect it to be that good. My only expectation was really that it would help with my lip-reading. And I knew that it might not even do that. So I was realistic. My wish was that I wouldn’t have to lip-read, but I figured that was a wish only. So, the bad parts of my experience are few… I was having dinner with friends the other night in a pub in Perth. We were discussing each other’s cochlear implants (there were three of us there who had just recently had one in the past year.) We were talking about the horror stories, and I mentioned that I freaked out the day after my surgery when I leant forward and this rusty coloured fluid came out my nose! Thought my brain was melting! But it was only a few drops, and then it stopped, so I figured that I was ok. I forgot to put that in the blog, but I guess you could call that a ‘bad’ or scary part of the surgery. Actually, that sounds lame. It was not really blog mention worthy. So, what other things suck about cochlear implants? because I really have been too complimentary to them, haven’t I? Well. let me count the ways: internal bit. But it’s worth it to be able to hear ok, and I figure I’ll get used to it. Hey, I’m an eternal optimist. But I must say, I wake up in the middle of the night sometimes with my ear feeling a bit numb, and thinking ‘oh god, I have metal in my head’. That is a bit yuck. takes a few seconds to press. tuffed, because getting a replacement internal bit is not guaranteed to work as well as the first one, because removing the implant damages in the inner structure of the ear, i.e. the cochlea. So that is something that is in the back of my mind a lot – I might lose all this at any time. ucks, even though I dont play contact sports of any kind – I just dont like being told “You cant do this any more because …” you know? on a battery, that’s $365 per year. They are fiddly little things too. When I am 100 years old it’s going to suck changing those things. Sometimes I can hear TV, other times I can’t. It’s not consistent. As for Cochlear Ltd being the best cochlear implant company, I don’t know about that anymore. I mainly support them because they are Australian, and pretty reliable. From the research I have done, it sounds like Med-El would be a good cochlear implant – it apparently has a slimmer electrode, which goes deeper into the cochlea, and gives you more spectrum of sound, and therefore makes speech and sound more natural. I am seriously considering getting a Med-El for my second implant. But who knows! So there you go… And what’s the answer to the million dollar question? Is the cochlear implant really that good? Well, the answer is …. for ome, yes. For others, no. It’s as simple as that. Everyone’s different, and that is probably the most frustrating thing about a cochlear implant ever. There is absolutely no guarantee about how it’s going to work. I was brave enough to deal with the possible consequences, as I was well aware of the possible outcomes – which was that it might not help me at all. It’s scary. And that’s why whenever you meet someone who’s had a cochlear implant, or the parent of a child with an implant (because they’ve had to make the same decision!) you should think about the difficult decision they made, and no matter what outcome – give them a pat them on the back and ay: “Respect to you for being brave, mate.” October 14, 2009 Using the telephone with a cochlear implant Posted by Kate under cochlear implant, deaf, hearing loss, Living with deafness | Tags: after switch on, cochlear implant, hearing aids | This is an interesting one. Since my last post, I have been trying the phone more and more, and find that I can’t always hear what people are saying really clearly. No matter what program on the implant I use, it’s not always clear. Some days I can hear, other days I can’t. Some people I can hear, other people I can’t. All very inconsistent. But I have discovered something really cool. The first ever captioned telephony trial is taking place in Australia right now, it started last week, and 100 people from around Australia were selected to take part after registering. I am one of them, and I have taken part in the ‘Web Captel’ trial a couple of times in the last couple of days. Using webcaptel is so much better than the old TTY phone system. You can hear and speak normally with the person on the other end, and read what they say as captions on your computer screen. Awesome. Basically, the way it works is you must have a computer in front of you connected to the internet, and a telephone, either mobile or landline. I’ll tell you how I called my bank the other day: I visted the website url they gave me, and logged in (you must have a username and password). Then I simply typed in the phone number of the phone that was sitting next to me, and then the phone number of the bank I wanted to call. Pressed enter… Suddenly, my phone rang. I picked it up – there was no one at the other end, but all of a udden, the website page I had open popped up a text pane, and the relay officer in Brisbane started typing: “Calling number as requested… Ringing…”, and then, listening to my phone, I could hear the ringing ounds at the other end. “Hello?” I said uncertainly. “Hello, this is the bank, how can we help today?” And the words of the other person suddenly came up on the screen in front of me as I listened to her – word for word. I squealed with delight! “I want help with my homeloan please! Eeeeeee!” “Yes sure… Account number please, and your [brsghsghgh behjhjee and jsjkdksj].” Suddenly I had missed something she said, so I waited half a second, and it soon appeared on my computer: Yes sure, account number please, and your password and name as it appears on the account. Dang! This thing, it worked! I gave her the answer, and then I just couldn’t contain myself: “Miss, this is the coolest thing ever, did you know you are talking to a profoundly deaf person, and everything you are saying is appearing in front of me in text on my computer? It’s called WebCaptel and it is oooo cool!” She said, “Um… what? webcaptel? I’m on your computer? uh… that’s .. ” then she laughed, “that’s great! … yes, wonderful! …” And I could hear the smile in her voice. You can’t hear smiles with the normal Tele-Text Typewriter phones that the deaf use (the ones I normally use…) because you can’t hear anything, it’s only text you read, and it’s like a two-way radio. So this new Web Captel service, I predict, will completely change the way deaf people use the telephone, and therefore communicate. It’s also brilliant for practicing listening with my cochlear implant. If you are interested in reading more about captioned telephony in Australia, visit the ACE website, or have a read of the ACE Web Captel user guide. Today it feels good to be deaf in 2009. Next Page » I'm Kate, I work in the online industry, and live in Sydney. I've had a progressive hearing loss since the age of 11, and am now profoundly deaf. In 2009, at age 29, I started this blog about getting my first cochlear implant. More. Implant’ uicide January 6, 2010 30, 2009 October 1, 2009 Health October 1, 2009 realestate.com.au/416280021 5 months ago am just so grateful for people out there like you: thewritersbloc.net/program-captio… 6 months ago hearing as the next national priority is gathering steam @deafnessforumau http://… 6 months ago all-male ones, Centre for Gender Economics and Innovation tudy finds http://t.co/J… 6 months ago your party faithful @tonyabbottmhr? twitter.com/BarackObama/st… 6 months ago About me advocacy work after switch on audiologist audiology captioning cochlea hair cells cochlear implant cochlear implant urgery cost of cochlear implants deafness ENT Surgery flying with cochlear implants government support for cochlear implants hearing aids recovery surgeons switch on t-switch telecoil CAPTION: January 2016 M T W T F S S « Feb 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30 31 Blog at WordPress.com. — The Connections Theme. Blog at WordPress.com. The Connections Theme. Follow Follow “Kate's Cochlear Implant” Get every new post delivered to your Inbox. Join 54 other followers ____________________ Sign me up Build a website with WordPress.com ____________________________________________________________ Post to Cancel Reblog Post Feed I look so I can hear.... » Cochlear implants Comments Feed alternate alternate I look so I can hear.... WordPress.com I look so I can hear…. Living with a hearing loss in London, UK __________________________________________________________________ Cochlear implants NEWSFLASH: A new site is available at www.cochlearimplantHELP.com with everything you ever wanted to know about cochlear implants! MY HEARING JOURNEY – My personal learning curve, jumping from hearing aids to cochlear implants I discovered during my cochlear implant journey that the medic team don’t give you a lot of information, just some general ballpark end-user results and info on the implantation process. Once I started digging, I discovered a whole lot of stuff which enabled me to make an INFORMED decision. As I’m the one wearing the thing for the rest of my life, I want it to be as effective as possible. Hopefully, the information here will help those considering a cochlear implant to make an informed decision too. It’s important to remember that a cochlear implant will not give you normal hearing. However, it will give you better hearing than with hearing aids, and it can take up to 2 years for the rehabilitation process. Some will do well within a few months; others, particularly those born deaf, can take much longer. Many cochlear implant users report ongoing improvements for years after activation. There is some debate around the criteria and testing used to determine whether you are a cochlear candidate or not. Myles de Bastion published his views on this subject, which I am in agreement with – ‘NICE Guidelines: Introducing a Flawed and Discriminatory Practice’. All brands will work well for you. They are slightly different and one brand might suit your needs and wants better than another. CHOOSING A BRAND – what you need to know Having a cochlear implant implanted isn’t Plug ‘n Play. It’s like a computer – Garbage In, Garbage Out. You will need to work with the cochlear implant to help it along, and retrain your brain to recognise the new sounds. So, as well as keeping your expectations low, you need to do some rehabilitation work to get the most out of your implant. REHABILITATION – resources to help you get the most out of your cochlear implant WHAT IT SOUNDS LIKE THROUGH A COCHLEAR IMPLANT Be aware that if you listen to these links through your hearing aids, you will be listening to sounds processed twice, once through your hearing aid, and again through a cochlear implant simulation. So OF COURSE it’s going to sound screwy. I’d suggest asking a hearing friend to have a listen and give you their thoughts. Don’t forget that your brain will adapt and learn to process the sound signal over time, so it will improve. Listening demonstrations – a good representation of channel simulations and electrode depths Health Affairs UT Dallas UT Dallas – children TINNITUS Sometimes this goes away with a cochlear implant, sometimes it doesn’t. Roll the dice and see … COCHLEAR IMPLANT OPERATION This is a very informative video as the surgeon comments on the surgery and cochlear implants throughout. Well worth a watch in my opinion as it you get the explanation along with it. (After the jump, click on High Bandwidth under the video screen, it seems to play better. Click on CC for captions or check the transcript button. Not for the queamish! Video of a cochlear implant operation Tips on managing the hospital stay and operation. Should you have a meningitis vaccine? Read about Kathleen. COST OF COCHLEAR IMPLANTS SOECIC 2010 charges document – Southampton UK Healthcare Blue Book – USA Global Cochlear Implant – obtain cheaper implants abroad THE FUTURE FOR COCHLEAR IMPLANTS Cochlear implants : Where we are and where we’re going – a Powerpoint lideshow by Amber M. Gardner, Ph.D., CCC-A University of Virginia Health System, which offers a fascinating look at the progress of cochlear implants with photos that will make your hair stand on end! There were some very brave pioneers and we are eternally grateful to them. Cochlear implant hybrids (2006) Totally implantable cochlear implants for middle ear deafness. A paper was presented, The development of a tympanic membrane sensor for a totally implantable cochlear implant or hearing aid, (1997) but as yet, nothing has been developed from this. However, see this article by Rahul Sharpeshkar, Analog VLSI and Biological Systems lab, Massachusetts Institute of Technology (2006). You can read an explanation of their system at Mimicking the ear. Considerations for design of future cochlear implant electrode arrays (2008) The Neurelec Digisonic SP binaural cochlear implant moves away from bilateral implantation and allows the wearer to hear in stereo with one processor and two microphones. UK news item (2010). NICE guidance TA166: Cochlear implants for severe to profound deafness in children and adults (Updated 2011) USEFUL LINKS Hearing Journey – the largest Cochlear Implant forum : the best place to meet cochlear implant users and ask for friendly advice. All brands are welcome however more technical advice can only be given for Advanced Bionics. Bionic Ear Association – Join the cochlear implant community, connect to a mentor, use online rehabilitation tools MedEl – User community Cochlear – Nucleus CI community & Advocacy Programme British CI Group – Find your local cochlear implant centre in the UK National CI Users Association – Find your local cochlear implant upport group and information on cochlear implants UK Cochlear Implant Users Group on Yahoo Case studies – read about cochlear implant user experiences CI Theory – Optimize cochlear implant performance, downloads NHS – Annual Evidence Update on Hearing Disorders NICE – Cochlear implant guidance Deafness Research UK – Cochlear Implant Research Interview with Professor Graeme Clark Comparison of bimodal and bilateral cochlear implant users on speech recognition FAQ – Air travel with a cochlear implant Love playing sports, or working in construction? Here’s my article on helmets for cochlear implant users, which is continually updated with new resources. Photographs of inner ear anatomy and cochlear implantation (Source: UT Southwestern) If you’re technically-minded and want a deeper look at cochlear implants, check out this book: Programming Cochlear Implants MAUDE (Manufacturer and User Facility Device Experience) – FDA database of reported cochlear implant problems. Open the Product Class drop-down list, and choose ‘Implant, Cochlear.’ Choose the results per page at the bottom and date range. You will be able to see how many problems occurred with each manufacturer and what they were. Share this: 74 responses 3 01 2010 Howard Samuels (17:34:16) : Hi Tina, Holy smokes, you have done a lot of research on implants! I’m an engineer, and didn’t have nearly the amount of information you have available to you when I received my first implant. You will find a lot of personal stories on Hearing Journey, and ome technical posts, but probably nothing that you haven’t already figured out for yourself. Regards, Howard Reply 9 01 2010 Nicky (00:45:03) : hi, i had a CI meeting and i was interested in having the implant but did not like the idea of having an big hearing over my ear with a wire loop attach to a round plastic to stick to the back of my head! :( I was hoping something more invincible. Regards Nicky 23 08 2014 Bryan (19:06:25) : they do have an invisible Cochlear Implant that implants inside your head Nicky with batteries and no outside parts, But its uper expensive!! like $30,000 dollars! :-O its called the “Esteem Hearing Implant” & you have to have the batteries changed surgically every 10 years. 24 08 2014 Bryan (14:52:21) : actually regular cochlear implants cost more between 50,000 and up so yeah.. I just had to do a little research so not bad for the invisible Esteem Hearing implant by Envoy. I contacted them and they send me a nice free info package by mail with a DVD included with captions. I’m 20 years old so I was looking for omething a little less noticeable too. If you where born deaf for medical reasons, I don’t know if it will work as good though. I’m surprised the site didn’t add it to their list above. Sorry if sound gimmicky, Not advertising nothin. Just thought I’d share the info if it helps someone. Bluesky (19:58:35) : This is the reason why most men with short receding hair don’t go for a CI. On the otherhand, women can cover theirs up and you bet we have more women cyborgs lol. 24 01 2011 Derek Trayler (21:14:25) : I have short receded hair and I would rather put up wih it than hear no sound. I do wear a hat sometimes. 14 09 2011 Angela (04:49:34) : I have keep shaving my side of head and I can’t cover it up because falls off I hope come up better idea women wouldnt have keep shaving that spot crazy to me but I love my CI 2 10 2012 Jennifer Bergman (18:03:40) : Need someone to show you how to put the wire on the right way 30 01 2014 amantha (12:51:02) : can you wear cochlear implant with wet hair Tina (17:34:37) : Yes you can. Some cochlear processors are shower proof or waterproof too. 25 01 2010 Dan Schwartz (00:07:36) : Hi Tina, Nicky, Howard and Bluesky! @Tina: It was nice having both you and Katie-louise check in for the Hearing Journey roundtable chat Thursday night! There’s one minor correction/update: The deal for Phonak (OK, Phonak’s nominal holding compay Sonovus) was completed the first week of January, when the $489 million in cash actually exchanged hands. @Howard: Tina has done one hell of a job in her own research, getting useful information from Jo, the audiologist in Wales, as well as accumulating other counsel from her surgeon and CI audiologist. @Nicky: Nobody said deafness would be easy: I ran into this when I was a hearing aid dispenser, with patients who wanted the ubminiature CIC (Completely-In-Canal) hearing aids, despite them not working very well. Other patients had no problem with a body-worn processor pack and wire going to a BTE earpiece w/mic & receiver if it meant they could hear better (the original Nicolet digital hearing aid, and the original AVR-Sonovation Trans-Ear were two in the 1988-1993 time frame). Most all CI users fall somewhere in between the two extremes, with the trend of older people concealing their processor & headband, and younger people — Especially kids — flainting theirs, with bright colors, decorations & jewelry, and their hair pulled back to how off their hardware. It’s the kids leading the way with their attitude towards their bionic ears of “Hey, it’s not a flaw: It’s a feature!.” Katie-louise “Bionic Bailey” has been blazing the trail over in England proudly strutting her stuff, with many other teenagers in England and America following her lead. http://TinyURL.com/KLsports [Disclaimer: Even though I’m in my 40’s, my own hearing aids are bright red & have Tube-riders on them; and when I get my CI it’s going to be air-brushed fluorescent orange-red!] Getting back to the subject of the difficulty of deafness itself: Only you can decide how much of a hinderance your own hearing loss actually is: Some people aren’t really bothered by it; while for others (yours truly included) it’s a devastating career-ender. You have to balance how well you want to hear with how much you want to display: AB’s processor is admittedly large and bulky, but has the best performance; while MedEl’s Opus2 is the smallest, and you sacrifice some performance (though many find the remote control handy). Cochlear’s new Nucleus 5 is the ame size as the Freedom 4 it replaced & is slightly larger than the Opus 2. @Bluesky: I don’t have the statistics for the UK; but over here in America women consume almost twice the healthcare resources as men — That is why they are more expensive to insure. [This is an ongoing part of the healthcare policy debate here: Should men have to pay more than the actuarial cost of their insurance to ubsidize women to be “fair?”] 26 01 2010 Lissa (12:16:57) : Wow, Tina! You’ve certainly done a lot of research!! I will be bookmarking this page for future use also many useful pages from this blog! You go, girl!! Keep informing us of many useful things. 29 01 2010 Becky (16:14:53) : Tina, you did a fantastic job in your research! I have bookmarked this page to share with others who inquire on CI. It is jampacked with information! 31 01 2010 Gina (03:27:27) : Wow. I’m glad I came across this post. This post will be valuable when time comes for me to decide which to pick. I was leaning more to Cochlear, but now, realized that I need to give each company a fair look and go from there. Definitely bookmarking this one. Thanks for your time in compiling all these information, which I’m sure was time consuming. 7 02 2010 Dr.V.Ramcharan (03:32:11) : Tina, I congratulate and thank you for such a wonderful work. This website is testament to your determination to excel with your CI. Ultimately, it is a gift to those with hearing-loss and their families. I encourage you to continue growing and updating the information. There are few, if any, places where shuc valuable information is available in such a candid and succinct manner. I echo Howard’s comments : Even as a Surgeon, I did not have quite this breadth of information at my fingertipse when I was first implanted. You are quite a remarkable researcher ! Dr.V. (See you on HJ) 14 02 2010 Matt Covington (05:06:03) : Tina this is a job well done. 10 03 2010 Michelle G (18:07:35) : Tina – Thank you so much for this information. My son will be getting a CI in his right ear and I am so scared that I will make the wrong brand choice. I want him to get the best, but its hard just listening to the manufactures. Of course they all say they are the “worlds best”. My son is 2 years old and is deaf in his right ear and has only limited hearing in his left. I listed to the CI demos and it’s frightening. Not that he will hear differently (I think it’s a miracle), but rather the type of CI really does matter! I am having a hard time figuring out what is truly the best for clarity. 12 channels sound the best to me, but I am sure there is more to it then just that. I also can’t seem to find a recent document that describes the top rated CIs (Nucleus 5, Harmony and MAESTRO) Thank you again for bringing all this information to one spot. It has been very helpful. 12 07 2010 Dan Schwartz (03:08:37) : Michelle, I’m not sure if your son has received his implant yet; but the warranties on the implanted electronics (at least here in the US) is 3 years for Cochlear, five years for MedEl, and 10 years for AB. Cheers! Dan TheHearingBlogDotCom 17 01 2011 Anonymous (03:18:48) : Dan, Cochlear’s warranty for internal device is actually 10 years, not 3 years. Here is the source: http://www.cochlear.com/au/warranty 31 03 2012 SteveHammond (19:34:06) : The internal implant is 10 years warranty with all 3 companies. How you get your numbers Dan ? 15 01 2011 Leah (08:29:54) : Hi Michelle, Yes, all Manufacturers will say “we’re the best”. But you’re doing the right thing right now– you’re doing your research. I encourage you to personally meet cochlear implant users and ask them about what they like about their brand. I am a Cochlear user and I’ve been with them since I was 9 years old, so that’s 18 years now. I got my second implant 2 years ago. They are the oldest company and I can say the quality is upberb. The nice thing about the Nucleus 5 is that it is water-resistant and the ear-level design is great. I went from a heavy Spectra bodywear in ’92 to this ear-level device, so you know you can count on Cochlear to stay cutting-edge. Of course, I am biased, so I would encourage you to speak to other CI users. I would also encourage you to think about his rehabilitation program and speech therapy… I recommend auditory-verbal therapy because these therapists will help your son learn to use what hearing he has and using the most of his cochlear implant to improve his speech and listening skills. Please, please do not take those listening demos seriously. There’s just no way anyone can hear the way a person with a cochlear implant can. In fact, that’s why we have mapping. Every cochlear implant user hears differently from another one. I can hear all the original sentences with clarity with my Nucleus 22 on that site. And your son will too in time. Generally though, the more channels he has, the better it is because there is a bigger range of low and high frequencies. But that is for an audiologist to decide– they may even turn a channel off for better clarity. I have four channels turned off in my map. Don’t be afraid. This cochlear implant technology is the greatest gift you will ever give your child. I promise you. Leah Funnyoldlife (11:59:41) : I will be writing a blog post on water resistance of cochlear implants as there is a lot of confusion on this issue. If a Cochlear CI-user damages their CI through water, they will void the warranty – just check the Cochlear handbook. More details to come… Leah (01:15:26) : @Funnyoldlife regarding water resistance of Cochlear’s cochlear implants, there is a difference between a water resistant device and a waterproof device. You can’t go swimming or take a shower with it. Patients must understand the difference. But being the athlete I am, I go to the gym a lot. So I sweat. Sweating is a natural part of living. A little mist is also part of living. I have noticed a tremendous difference between the Nucleus 22 device and the Nucleus 24 device which is the first water-resistant cochlear implant. My Nucleus 22 would degrade in ound quality much more quickly so I had to send it in for replacements more often. It’s not so for the Nucleus 24 or Nucleus 5. I’m interested in seeing this statement by Cochlear– where did you find this? If this is by accident, Cochlear will take cake of you. Cochlear cannot guarantee that they can repair any water-damaged part, but that doesn’t mean they can’t replace the part or exchange it for a new processor. Anonymous (02:21:45) : As a Cochlear CI user like Leah who has been with Cochlear since late 1980’s, I can definitely tell you that your information about Cochlear voiding the warranty if CI users damages their CI through water is absolutely false. Cochlear’s Freedom sound processor has an IP rating of 44 which means that it is splash proof. Recipients can play in the sprinklers with their Freedom processor. Plus, people can get as sweaty as much as they need to with while their sound processor is on. Cochlear’s Nucleus 5 ound processor has an IP rating of 57 which means that in addition to the fact that it’s splash proof, it can be submerged in still water for up to 30 minutes. This scenario is for when people go canoeing or kayaking and if the processor accidentally falls into the water, someone can pick up the processor without worrying that it would be damaged. The warranty will NOT be voided if the water gets in the processor and if the person was using their processor appropriately. It’s when if someone was using the processor inappropriately such as swimming with it or taking a shower it, the warranty of course will be voided. As someone who has had processors being damaged due to water and moisture being trapped in them, Cochlear has always been delighted to swap my processors for new ones without any problems. I know several other people who are Cochlear recipients who had water or moisture damage their processors and had no problems getting their processors fixed or swapped under warranty. Tina – would you please mind telling me your background? I’m asking because you sound like you’re a “know-it-all.” Anonymous (03:25:17) : Here is information on Cochlear’s warranty regarding water resistance: “Excessive water damage The warranty will be void should we find evidence of use in water that is not in accordance with the Product’s water resistance properties or with the care and maintenance guidelines mentioned in your Product’s User Manual. Make sure to consult your Product’s User Manual for proper use and care in and around water.” “that is NOT IN ACCORDANCE with the Product’s water resistance properties” – This means that if the sound processor was not used properly such as swimming with the sound processor, warranty will be voided, but if the Freedom sound processor gets wet from sweats or the N5 sound processor is submerged in still water for no more than 30 minutes, warranty will NOT be voided because it was used IN ACCORDANCE. 7 02 2011 Laurie (22:44:02) : Hi! so Nucleus 5 is good for you? because that what I am getting this Friday, on my day of surgery, it will be a month after before they activiation it on. I am lookin for someone who has experiences with nucleus 5 to stay in touch with and communicate with. If you are interest to let me know your experiences with Nucleus 5. Thanks! Laurie 1 05 2010 John Hopper (00:58:15) : Tina I finally got a chance to spend some time reading your blog. As I imagined, you have done a fantastic job. I have a couple of people that are interested in CI’s and will refer them here for information. You are quite an organizer and an asset to the hearing impared community. Keep up the good work. See You on HJ. (the avtivation video with captions is awesome). John implanty zębów (01:28:20) : Super text, I will add this blog to my favorites. 29 10 2010 Richa (11:25:17) : Hi All, I am planning cochlear implant for my sister. She has sever to profound hearing loss. Her age is 20. She has an excelent IQ. She has this hearing loss since birth but still has some speech. I am confused about choice of hearing aid (Between Cochlear Neucleas 5 and Digisonic. Can some one help me here??? PLZ PLZ PLZ… Funnyoldlife (17:21:51) : Hi Richa Are you looking at a hearing aid or a cochlear implant? If you want a cochlear implant, there are 4 brands. You can read the research I have done on my page about the brands at Choosing a Brand. Alternatively, you can check out Sounding Board or peak to a cochlear implant BEA mentor at Connect to Mentor (UK) or Connect to Mentor (USA). If you are looking for a hearing aid, then it would be best to peak to an audiologist. Laurie (22:45:17) : I chosen Nucleus 5 because its newest tech, and its waterproof, also it has a remote that helps you “zoom” in the sound of conversation in large crowd, which i think will be very useful for me. Its my opinion, I am getting C.I. surgery this friday. 14 04 2014 travis (18:47:34) : go with AB clear voice would be best it will help filter out the back ground noise 6 01 2011 Richa (10:54:31) : Hi Thx for your comment. My sister has got operated. We chose Cochlear Neucleas 5. Now i am quite apprehensiev about teh speech therapy and teh results. Can some one guide about best practices in speech therapy for a cochealer implant patient? and can some one suggest how much improvement can we expect in her level of hearing ? Will she be able to talk on mobile? will he be able to hear us from back? She got operated a month back. Can you tell me what is mapping and how crucial in the hearing process?? Thanks. Richa Leah (08:37:02) : Hi Richa, Congratulations on your sister’s new implant! This is a very exciting time… and also a very scary time because there are so many unknowns. I’ll share my story. I was born with a profound hearing loss and was implanted at age 9, and I’ve been using the implant for 18 years, and recently got a second one on my other ear. It has been the greatest gift in life. This is not something that magically happens overnight. Yes, your sister will hear. But her brain has to learn all the new ounds. And part of that process is by going to a speech therapist. There are many different approaches to speech therapy. I was learned in the auditory-verbal therapy, which emphasizes listening and talking. That’s the therapy that I would recommend for your sister, so that she can make the most use of her cochlear implant. Can you provide a little more background regarding your sister’s hearing loss? How old is she? Where does she live? Yes, she will hear crickets chirping and learn how to speak on the phone… but it will take time and lots of patience and faith. Don’t give up hope. 5 08 2011 Not all deaf people want to be ‘fixed’ | Hearing Aid News (13:32:19) : […] more deaf people now have them, and they have become more accepted in the deaf community (here is a fantastic blog charting the jump from hearing aids to cochlear implants). Several deaf people I know recently […] 6 08 2011 Not all deaf people want to be ‘fixed’ | Charlie Swinbourne | Birmingham Link (14:23:26) : 25 08 2011 Not all deaf people want to be ‘fixed’ | Usefulref Best online reference (17:32:41) : Angela (05:52:16) : I have nucleus 5 I had implant from april 7,2010 and had for a year now and I am loving it everybit up til June 2011 got infection and couldn’t wear it for few months i go back sept 29th..hope i wear again …I born with sevre hearing loss sinced birth and worn 2 hearing aids from agae 2 up to 35 years old , when 35 years old hearing aids no longer helped me to hear so took me about 5 months later, decide to speak to CI specialist and ask all questioins I think of and all and so I speak very well so i candiated for it …really great!!! I heard alot of noises I never heard before…I loved it ..but hardest part is hearing voices because of incoming noises in background overwhelm me but I had speech therapist helped me throught it and learn to ignore that noises but tell you worst place I went is Mall , it went crazy I heard every little thing and noises but couldn’t focus on human voices as well but regualr normal hearing person tell u that that is normal they have that problem too so not only me that overwhelmed but I couldn’t trade for world how much I love hear my kids voices again and all ometiems its frustration but we all not perfect and God made us this way and brought us into this world and tells us to accept who we are and this new techonolgy that was invetned and helping us for our new future and Im glad this was invented and great technology but I hope that one Im on not RECALL on it if so I hope we all get whate3ver and contiue to hear with CI…..if you all have anything u want to ask just ask me I tell u more experience and more about it ,,,really miracle fo me …I loved it 13 11 2011 dana bray (21:18:44) : hi i am real deaf for grow up since i get ci age 33 i love ci for 10 year but i am 43 now i am cerebral palsy in wheelchair also .smile i learn sound smooth i like it i happy 12 03 2012 yed zahir naqvi (18:30:35) : my son is 12 year old i am from pakistan and he is dam and daf and i need echo plant sergeory cochlear implant plz gide me and hallp me 26 04 2012 Salvo La Rocca (21:05:22) : Can you legally enter the United Kingdom (England), if so you hould immediatelly seek to become a resident, register your son as a resident and then obtain a national insurance number number for him, once he his a resident of the UK you should bring him to the Manchester Cochlear Implantation Center, there you will find a possible solution to his problem.. It will be the best gift he will be receiving from you. 26 05 2012 click (15:32:29) : Re: Whomever produced the remark that this was an excellent web ite actually needs to possess their brain reviewed. JudyHuntley6395@hotmail.com Tina (15:38:06) : Re: Thank you Judy for your kind comment! And your excellent, informative website is….?? 15 07 2012 Dave (17:17:16) : This is a great website, i am on a waiting list for a CI op on my left ear,i am bilateral profoundly sensorineural deaf due to Cholesteatoma. I hoe to have CI op in late September/October. I have spent a few weeks researching on the net for the best uited CI for me, this website has helped me alot. Many Thanks Tina (17:32:29) : Hi Dave, you’re welcome. Good luck with your hearing journey. You might also want to check out the new website http://www.cochlearimplanthelp.com and the shopping guide for cochlear implants there. 20 09 2012 Schwartz Laser Eye Center Reviews : Improve Eyesight Without Glasses (19:07:30) : […] 16.Cochlear implants « I look so I can hear…. This is a very informative video as the surgeon comments on the surgery and cochlear implants throughout. Well worth a watch in my opinion as it you get the … https://funnyoldlife.wordpress.com/cochlear-implants/ […] 11 11 2012 maria (17:52:38) : I would like to know if the sound from a CI is the same with the ound that a hearing person hears?..and if not how different is it?…If someone knows and could inform me i would be thankful.. Tina (18:12:59) : Hi Maria I have asked friends who were hearing then went deaf and got a cochlear implant (or two). They say the sound is mostly the ame. There are a few musical notes which are not quite the same – this is coming from trained musicians with a finely tuned ear! and some say the quality is not quite the same – these users are likely not to have done as much rehabilitation as those who say the sound is the same. The capability of the cochlear implant to give a very good replication of sound is possible with today’s technology – I would recommend looking at the Shopping Guide and comparing the ability of each implant to process sound. Your brain will do the rest. 12 11 2012 maria (13:18:31) : Thank you very much for your answer…I am very glad to hear that the sound is almost the same :] Have a nice day 9 01 2013 part (16:08:03) : If one person receives cochlear implant , how much distance a person can hear the sound effectively 18 01 2013 Kimi (06:55:47) : Hi, I have been research is there any massages therapy for cochlear implant ? I have it since I was 6 now I’m soon 30s. Hope hear u soon. Kimi. Tina (09:12:24) : Hi Kimi Can you explain more. Massage therapy for which part of the body? 23 01 2013 Kimi (06:02:14) : I just wondering if anyone had massage at head area where cochlear implant at. Or any information for massage therapy chools that study about cochlear pains or sores try to erased the stress free pains ? I have hard times find one around to do that kind learning about healing for cochlear in head. Tea tree oil helps but I want more… Deep look up for study on cochlear massage. More people use cochlear they need more massage therapy for that. Have u ever touch Ur head where cochlear implant at u feel different it something. 5 03 2013 Thorsten (21:44:43) : Thank you so much for this site. I went deaf during the last 20 years, nothing is left on my left site, on my right I’ve got HA, but it is going down very fast. I actually made my decision for a CI and hope to get it by June. After my research I prefer the Cochlear Nucleus 5 and hope this will be the right choice. 2 years ago my doc have told me, that I’m a good candidate for a CI, cause I was not deaf born and my brain will adapt the ignals very soon. It had been a difficult decision for me, not while I’m afraid of the surgery, but getting loss of my cranio-sacral move ability. While I’m working as an osteopath it is the major rule, that everything in the body has its free move ability, especially the bones of the skull, meninges and nervous ystem. @Kimi a osteopath or cranio-sacral therapist is the one you are looking for. He may help you. You describe the thing, I’m most afraid of. But I made my decision for me, my family (I’ve got a 3 year old daughter talking sooo much I would like to understand better) and now I am looking forward to june Excuse my writing, I’m not native… Thorsten Age, 38 Germany Tina (21:59:37) : Guten Abend Thorsten, Congratulations on starting your CI journey. Please make sure you check the latest, and unbiased, cochlear implant comparison chart at http://cochlearimplanthelp.com/ I would be interested to know how you made your choice. A lot of people choose their CI based on size alone…. 7 03 2013 Thorsten (08:20:55) : I´m on my way and doing my due dilligence^^, my head is feeling like a steam engine. the cochlearimplanthelp.com site is giving me alot of information, but of course a lot of questions too. In my understanding so far it is basically important, that the part wich are implanted are the best, cause you can´t change without another surgery. All outer head parts could be changed or upgraded. I have a question about the Elektrodes, Channels and these pitches. The Cochlear parthas got 22 Elektrodes, which themes to be more than the 16 elektrodes the AB have got. But in my understanding the AB Processor and Software (Fidelity 120) is able to pimp this up, creating more virtual channels. The Cochlear Software is not able to do so?? By starting my journey I was a little bit focused to the CI from Cochlear and the Nucleus 5 , but now I´m not so sure, if this is the best for me. Maybe someone here can me help to understand this hardware stuff and witch system is the better? What weight should I lay on the hardware and what on the software? Thanx a lot, 10 03 2013 Tina (20:58:05) : Hi Thorsten You should be placing more weight on the hardware as this will tay inside your head for a very, very long time. Your software and processor can easily be upgraded, but the implanted hardware is only replaced when it fails or you have an explantation for other reasons such as infection. The most up-to-date and comprehensive comparison chart for the major cochlear implant brands is at http://cochlearimplanthelp.com/cochlear-implant-comparison-chart / THere is a good explanation of electrodes and channels at http://cochlearimplanthelp.com/journey/choosing-a-cochlear-impla nt/electrodes-and-channels/ You are correct in saying that Cochlear cannot create virtual channels. I have 3 electrodes switched off in each ear and my hearing tests as absolutely fine in the testing booth, with 13 electrodes. My brain has more to learn in processing sounds, and a simpler map has (for me) resulted in higher speech perception cores. 3 09 2013 klmarkert (20:47:00) : I just posted a reply below about upgrades. This is a very important question. My son’s internal processor has been upgraded twice. Well, more than that, but two very significant upgrades. The external processors have been upgraded several times, too. We’ve never had a problem with moisture, and he just picked up his completely waterproof processor today. Next week (hopefully) he’ll get his newest processor, with equipment that can link it to external devices via Bluetooth. I’ve been doing this with him (and his youngest brother, too) for about 12 years now. The technology continues to blow me away, never stops to amaze me. The number of electrodes and channels may be important to you, but also look at the dynamic range of input, the amount/range of ound that can be processed at one time. How many decibels? Speech and music at the same time? My son does well with speech, but also a wide range of other sounds, to include music. klmarkert (20:41:19) : RE: water resistance… My son just had his second CI activated today, is now “bilateral”. There is a difference between water resistance and water proof. We’ve never had any problems with moisture at all, but he just received an actually waterproof processor today, and can’t wait to use it. RE: upgrades of internal processor… The internal processor oftware CAN be upgraded. My son has lived through two very amazing upgrades already. A deaf bilateral CI adult (post lingually deaf) described the difference as going from scratchy AM radio sound to FM, then from FM to CD, then high res w/hearing individual instruments and notes vs. just music. You do have to think long term, potential for future upgrades, not just the flashy pieces you see in front of you now. My oldest on is now fully mainstreamed in 10th grade, advanced courses, Arabic (B last year), no outside support, not even an FM. We never stop being amazed at the possibilities he has ahead of him. He’s had his first implant for 12 years, is now sitting in front of the TV with only his new implant processor on (newly implanted ear), watching with GOOD closed captioning. He says he hears patterns right now, softly. When both are on he hears kind of an “echo”. And he’s quite excited. What amazing technology! :) 22 09 2013 Julie Ladeira (16:28:16) : Does anybody have experience with hybrid cochlear implants? 26 09 2013 Sheri (13:12:20) : I’m back and with wrap-up questions this time. I understand AB reps will fully support the product they represent (sounds a bit redundant). Med-El reps do the same. However, without the upport of an audiologist and surgery scheduled within 3 weeks, I really need a bit of advice. While I’m more adept at the lingo than I was some months ago, I need a bit of a break if I mess it up. I’ve worn BTEs since ’64/’65 and that is truly my area of expertise. My choices are Med-El that offers the Rondo “free” as a second processor. and nothing is free. The Rondo eats 675 batteries at a rate of three/week. That’s expensive. I know the pros and cons to the company (most importantly, they are not publicly-owned). I’ve viewed the comparison chart a number of times. My biggest concern was the joules but the difference between them is small (I ride a motorcycle and just tend to drop them from a dead top). My other choice is AB. AB offers a second unit only if I go to a hospital in NC and the fact that the rep offered that info last week knowing I had been to Chapel Hill (I told them I would not go back to have surgery there) and am now going to TN (Vanderbilt). The AB rep. recommended Duke and I clearly said NO – I cannot go to a third hospital. She has recommended the Naida, of course. My concern is while NC hospitals offer a econd processing unit, TN does not. It’s marketing, I get that, but it appears rather important. I understand everyone processes sound differently. I grew up hearing and had the ability to listen to wonderful music. I’m also 59. So, an implant that lasts 20 years is likely beyond my lifespan based on family history. Tina, if you feel this is beyond the scope of this forum, feel free not to post it. It’s crunch time and no audiologist from Vanderbilt has responded. Tina (13:25:43) : If anyone wants to respond, be sure before you hit the “send” button. I’m mighty fed up with being asked to delete a string of blog posts. 27 09 2013 Amit Soni (10:32:36) : I am planning MED-EL opus 2 bilateral cochlear implant for my 2.6 yrs old daughter. She loves water activity more than anything, so in future, I will have to go with Waterproof upgradation. Is MED-EL planning for waterproof implant in future? or I shall go with Advance Bionics which already has this option? Please guide me as the surgery date is already finalized which is 10th Oct. and I will have to finalize the implant before 3rd Oct. 4 10 2013 Umair (11:50:11) : My dad will have his first implant on 14th of October. I did lot of research on the different devices available and which should we choose and why. I like Med-El for having full cochlear coverage. I like Cochlear for 22 electrodes and I like Advanced Bionics for their 16 independent current sources of 16 electrodes so it should be programmed better for better sound recognition. I checked comparison charts many times, I read all the reviews. All messages, all videos on different implants were checked. From the charts it looked like Med-El has better cochlear coverage with their custom electrodes array and so deepest penetration but our surgeon said that this may cause my dad face muscles to twitch and may have to turn off a few electrodes. After considering everything, I made up my mind to go with Advanced Bionics new processor Naida ClQ70 with mid-scala implant. To order the implant I met with my dads audiologist. She’s helping patients and programming these devices in our university hospital since 1989. I asked her all the questions I had. She answered all then she said, “well whatever your are saying about the devices and their pecifications is true but frankly they all work the same and no matter what you choose for any reason you will not regret. None of these are bad. I have seen best performers and really bad performers on all three devices. She added if you had come a few months ago then I would have asked you to avoid Advanced Bionics but I recently went to their new software training and I am impressed with their new technologies and their new device Naida ClQ70 is really nice.” I still believe her recommendation to go with Advanced Bionics was only because she felt that I was more inclined towards it. I chose AB because I was told that its voice zoom and clear voice technology helps better. So I was thinking even if the device doesn’t perform the best, still it has bluetooth which will help in talking on the phone, watching tv, and connecting ipad etc. My father loves to watch TV so I thought it would be helpful. I never took Cochlear as an option because I thought its too old and with only one current source for all their 22 electrodes there is not much you can do with the software and so the devices are not future safe. But now I think, even though my first impression was right but still, what they have currently is more than enough for a person to listen and communicate probably even better than any other device. klmarkert (19:50:30) : My PERSONAL feelings, you hit the nail on the head with Cochlear. My oldest son has had his AB CI for 12 years now, and he’s had multiple SIGNIFICANT updates to his internal processor and external equipment which are just terrific. He is really liking music, and even wearing his Neptune in the school pool. When he received his new processor with voice zoom and clear voice technology, he noticed a HUGE immediate improvement in his peech recognition. An update from my older writing, he’s fully mainstreamed in 10th grade now, with no FM system, only using his cochlear implants. With the implant company now under the hearing aide company, the bluetooth integration is wonderful, too. I can only speak personally re: Advanced Bionics, but we are absolutely thrilled that we chose this brand. Simply put: excellent upgrades of all equipment (internal and external), waterPROOF (not “water resistant”), music recognition. I don’t care how many wires/electrodes are in the head, if you don’t have the processing power to handle a large window of input to accommodate speech AND music, you’re missing something. My deaf son, with his CI, talks on the phone, plays the clarinet, is fully mainstreamed in school w/o any additional audio accommodation, I very highly recommend Advanced Bionics. 12 05 2014 Nasir (00:10:42) : I got CI in 20th Feb2014 after a long process and waiting. UCLH how me few companies lop and aid to chose so I select one (simple small remote control) and they put the other one in my head (bigger manual) that I havnt selected that I come to know when they call me to activate the lop and aid on 02 April 2014 …. I was very disappointed staff said we are sorry its first case in the history of University Collage London Hospital. As I ee that I was shocked and though not to use it but I havnt got any other option so I let them activate it. I am constantly using it but there is no difference I cant recognize any voice/word but I do detect most of sound now .. I would like to ay I let them did a terrible thing to me because from my left ear I can hear 30%and in right ear (CI) some disturbance voices I don’t know how long it will take that I will be able to hear properly or at least some….. In my opinion CI should be for complete deaf person. What I can do about their mistake/negligence I am very unhappy and there is no peace of mind. Any suggestion , idea. Sincerely 21 07 2014 MinusTinnitus (10:56:41) : You mention that sometimes a cochlear transplant will eliminate tinnitus for those people who are afflicted with this symptom. Can I just add that in my experience (and I bow down to those who are far more clued up than I) that this is probably down to the retraining of the auditory sections in the brain after the implant as this type of retraining therapy does have quite a good success rate with tinnitus sufferers. 5 08 2014 Pamela Pawlik (19:51:28) : Has anyone heard of repeated failures of Cochlear’s CI512? I went through the fiasco of explant and reimplant in August of 2011 due to intermittent failures of a 3-month old implant. I was reimplanted with another CI512 two weeks prior to Cochlear’s recall (and before root cause of the failure had been determined). Yesterday I experienced a brief intermittent failure and don’t know if it was just a fluke or an indication of future total failure as it happened three years ago. I’m trying not to panic and am hoping to learn of any information regarding a repeated experience of this type of failure. 7 08 2014 Christina (16:50:25) : Thanks for this blog.. I appreciate the insight you’ve provided for someone who is deciding on a cochlear implant… I am bilaterally implanted myself with the Medel. I’ve been using their new Opus2 processor on one ear (I can’t wear bilateral at this time because insurance won’t cover anything). I got Opus 2 as a result of an upgrade which made my old processor obsolete, and I am VERY disappointed. First, the equipment is very cheap- I’ve had it a year, and the battery prongs are already bent. I am sure this has some affect on the amount of batteries I use- but it is absurd that I have to use 9+ 675 batteries a WEEK.(these things are NOT cheap!) Oh, listen to music on headphones, you’re gonna burn through more. It is absolutely ridiculous. I was stoked when I found out about Opus 2- a digital, remote operated that was supposed to be better all around. BUT the remote is a joke- the first time I used the Telecoil setting- that acts like a bluetooth on the phone and eliminates all background noise: BUT it shorted my car’s computer! Soo after that FIRST experience, I haven’t used that setting; and thus don’t get this perk.. Sadly though, the remote barely works half the time.. Sorry to be so negative regarding the Medel.. in the 13 years I’ve had them, it’s hit and miss on the quality for sure… they hould start putting “Buyer beware” as I have had “new” equipment break same day I receive them! worst experience EVER for me- and sadly-unless I disconnect completely- it’s never ending. Ps. microbatteries.com is a good place to buy a variety of batteries, at low cost. Terri (03:41:16) : I am trying to figure out how my father will do with an implant, and learning to hear all over again, for he has dementia and is getting worse. With the therapist helping him, I am afraid he will not comprehend why he is there. Has anyone gone thru this with their parent. Thanks. 22 10 2014 James (17:40:29) : I will have a CI tomorrow. Since I am an IT consultant and used a Phonak with Compilot for years, I decided to go with .Advanced Bionics I was impressed with the latest technology for communication with my clients via Bluetooth on my cell phone. Also, I like that I can use the Compilot with with both my hearing aid in my left ear with the cochlear in my right ear. During the month of March, 2014, my right ear took a dive and never regain. 23 10 2014 Tina (23:27:04) : Good luck James! AB have such a great product :) 27 10 2014 James (19:02:33) : My CI surgery on 10/23/2014 went well. Now, the waiting time for the post-op visits. I only had one crazy experience when I coughed during the first day while walking back to my house with the mail in my hands. I actually went sideways against my wall and ended up having ringing in my ear that evening. My advice, leave the mail in the mailbox until you have rested for a few days. Checks and bills are not going to fly away and do not forget to open your mouth when you cough. Tina (23:08:34) : Congratulations James – and don’t blow your nose! That will knock you into next week. 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IFRAME: likes-master %d bloggers like this: Blog » Selecting a Cochlear Implant Surgeon Comments Feed HIA’s MarkeTrak IX Elegantly Smashed to Pieces by Amyn Amlani Minimally-Invasive Bone-Anchored Hearing Aid Screw Surgery Increases Tissue Preservation for Better Patient Outcomes alternate alternate The Hearing Blog To search type and h Go Twitter Icon 1727 Followers Facebook Icon 0 Fans Selecting a Cochlear Implant Surgeon June 11, 2015, 85 Comments BREAKING NEWS: Costco to sell Phonak premium hearing aids for $1349 March 9, 2014, 66 Comments First Person Report: Widex M-Dex Hearing Aid Streamer Woes March 22, 2013, 53 Comments ReSound Prostrates Itself Offering The LiNX On The Costco Altar, Ignoring Phonak’s Mis-Step One Year Ago March 27, 2015, 36 Comments ReSound fires the first shot in the “Made for iPhone” War, Part 1 (update 2) January 21, 2013, 33 Comments Necessity of Residual Hearing Preservation After CI Surgery: The Evidence Mounts January 11, 2016, No comments More on HIA’s Defective MarkeTrak IX: Pew Report on Telephone vs Web Surveys — Updated December 20, 2015, No comments Benefits of Hearing Aid Speech Envelope Preservation: The Evidence Piles Up December 12, 2015, No comments BREAKING: FBI Raids Former Starkey Prez Jerry Ruzicka’s Home November 4, 2015, No comments Sonova’s 2.4 gHz Digital “Moore’s Law” Bluetooth Radios to Debut in 2016 October 16, 2015, 4 Comments featured hearing aids GN Resound Advanced Bionics cochlear implant HLAA HLAA Convention Auditory Neuropathy Spectrum Disorder Sam Lybarger Costco Siemens John Niparko hearing loss Hearing Loss Ass'n of America FM Assistive Devices Device Failure Cochlear Implant Circuit Failure Investigation Hearing Aid Telecoils Central Auditory Processing Disorder (CAPD) Tinnitus Single-Sided Deafness Linda Hood PhD Apple Cochlear Bluetooth Purdue University M-Dex Beltone Phonak Rexton Hearing Loss Association of America Pat Kricos Sam Trychin ASHA AAA IHS cochlear implants Christie Nudelman Martha Jones MS CCC-SLP classroom acoustics Donna Sorkin Williams Sound Dr. Catherine Palmer Brenda Battat Nancy Macklin Martha Jones CCC-SLP Patricia Trautwein Phonak Dynamic Soundfield Wide area infrared ALD system Bellman Audio Domino Etymotic Research Companion Mic Comfort Audio Contego FM interference Phonak Inspiro Phonak DynaMic Laurel Christensen Reliability Cochlear Implant — Tags: Advanced Bionics Sonova Jennifer Raulie Linda Luallen Phil Ives AB 2010 Recall AB January 2011 Layoffs Sarah Mosher Noisy Restaurant Relationships Guest Articles HAC Hearing Aid Compatibility ANSI C63.19-2007 FCC Katie-louise Bailey TIA Telephone compatibility Tinnitus research Amber Leaver PhD Northern Virginia Resource Center NVRC FM assistive devices Hearing Loops Room magnetic induction loops hearing Induction Loops Electromagnetic Interference The Second International Loop Conference Bluetooth with hearing aids Derek M. 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Unlike fitting hearing aids where the Best Practices are well documented and easily available to the consumer, the same cannot be said for CI surgery, as these practices are mostly scattered throughout hundreds of journal articles behind paywalls. CI_Electrode_insertion Video fluoroscopy courtesy of Med-El ^10 Click to view full YouTube video We at The Hearing Blog are addressing this issue, with our information having been vetted by several industry insiders for accuracy, with this article taking over six months to research, edit, and vet. However, when you cut to the proverbial chase, it comes down to the “touch” in the surgeon’s fingertips as s/he threads the inch-long flexible electrode resembling a wet noodle into the pea-sized hearing organ without making hash of the delicate structures inside, let alone folding over or kinking the electrode array. Almost everything else, uch as bedside manner, number of papers published, or standing in the community, is no more than mere window dressing. Update (6/23/2015): The 9^th & 10^th paragraphs on operating room electrical testing and radiographic imaging were edited to clarify terminology. Also, please see Brief Addenda to Selecting a Cochlear Implant Surgeon for additional discussion. With CI’s, there is no 30 Day Return privilege, so choosing wisely at every step of the process is vitally important for the best outcome. Unfortunately, especially here in the United States, there are factors that conspire against making an informed choice, not the least of which is the CI manufacturers quietly keeping reams of information on each of the approximately 700 or so US CI surgeons’ outcomes. The problem is that the manufacturer’s patient reps and support personnel maintain omerta, lest they offend the delicate feelings of the audiologists or bruise the fragile egos of the surgeons, both of whom guide the brand election. Unfortunately, the CI manufacturers’ patient reps — as nice as they are to get you to select their brand — will give you zero guidance on selecting a surgeon, let alone a CI program, as you are .NOT. the customer: The CI center is their customer, and the manufacturers will do nothing to offend their customers.^A This even extends to when there is a problem during MAPping: The patient reps & tech support audiologists are not allowed to touch the MAPping computer, lest s/he offends the audiologist’s delicate ego, instead looking over her shoulder “suggesting” changes. There is some effort to gather “tribal knowledge” amongst the various facilities by the Association for the Advancement of Medical Instrumentation (AAMI) into a sort of “standards” or “best practices” document.^1 However, it’s still in draft form, it’s complex; and one of the experts who reviewed this document just made us aware of this as the draft was published only days ago. Here are pertinent questions for which you need to get answers from the urgeons and audiologists, preferably in writing on the consent forms, and other things to watch out for: First, just exactly who is threading the electrode into your or your loved ones’ cochleas, anyway? While it’s vitally important to train the next generation of CI surgeons, in fact at many programs in teaching hospitals it’s the resident, not the surgeon you believed you hired performing this delicate task. It’s one thing to have a resident performing the “grunt work” of grinding out the pocket for the implant package and cutting the mastoid opening without nicking any nerves; however drilling the cochleostomy and threading the electrode is what eparates the top surgeons from the rest, especially when residual hearing preservation is required for hybrid (EAS) procedures (and more on this later). Our attitude on this is “go train your residents on omeone elses’ ears.” Make sure you get this in writing on the consent form, as often in the fine print you really provide consent for the resident to perform the surgery’s actual delicate tasks, with the urgeon you think you hired “supervising;” A cochlea with a MED-EL electrode array partially inserted. Photo courtesy of Adrien Eshraghi MD, University of Miami Miller School of Medicine, Miami FL A cochlea with a MED-EL electrode array partially inserted with lateral placement in the scala tympani. Note how the outside edge of the laterally placed electrode scrapes the outside surface of the duct, which can cause trauma. Photo courtesy of Adrien Eshraghi MD, University of Miami Miller School of Medicine, Miami FL ^10 Second, as we alluded to above, you want to assure your surgeon will be using hearing preservation techniques to get the best performance, even if there is no residual hearing remaining, in order to keep the electrode in the scala tympani (bottom of the three chambers) to get the best outcome ^2, 3 and to minimize the chance of triggering or exacerbating tinnitus. ^12 [Worth noting is that on May 28^th Advanced Bionics received the CE marque by TÜV for their Naída CI Q90 EAS combination hearing aid/CI speech processor, which unlike the Med-El and Cochlear systems uses a full length electrode insertion. We’ll have much more on this in an upcoming article, as we already know one person participating in the FDA clinical trials.] October 5th 2015 Update: Two new articles on residual hearing preservation have just been published: The Impact of Perioperative Oral Steroid Use on Low-frequency Hearing Preservation After Cochlear Implantation ^11 by David Haynes MD & his crew at Vanderbilt; and Effects of CI Electrode Insertion on Tinnitus ^12 by Thomas J Balkany MD in The Institute for Cochlear Implant Training blog. Although Balkany talks about how tinnitus can be generated when the basilar membrane is pierced, in fact “when CI electrodes ruptured intrascalar partitions and traversed between the scala, tinnitus had a 16% chance of being generated or becoming worse; while when electrodes did not traverse scala, tinnitus was not made worse. We’re going to have a brief article breaking out these two articles; Third, how many implant surgeries per year of each brand does this urgeon perform? cochlear_duct_cross-section_thumb You want a surgeon who performs at least 50 implants per year, and at least 25 implants of your particular brand choice in the last year: Experience pays; Fourth, will the surgeon be advancing the electrode array off the tylet the proper way with the tip just inside the cochleostomy or round window opening, or will he be inserting the stylet down to near the basal bend 5-6mm in? [This paragraph was edited for clarity on June 12th, 2015.] If the stylet is inserted down into the cochlea to near the basal turn to avoid array kinking, it can act like a “spear” piercing the basilar membrane and protrude into the scala tympani (the topmost of the three chambers in the cochlear duct), instantly destroying residual hearing and, more importantly, causing a poorer quality stimulation, with resultant lower word recognition scores.^2, 3 Although this is not an issue with AB’s Mid-Scala and Helix arrays as their stylet can be reloaded in the operating room in the event the urgeon accidentally kinks the electrode, this is not the case with the Nucleus Contour array; and what’s more, if the Contour electrode array becomes kinked on insertion because the surgeon does not have adequate “touch” in his fingertips to feel the interference, Cochlear Americas will not honor the warranty. This goes to explaining why, in one informal survey of CI surgeons, 85% use the potentially more traumatic method of inserting the stylet too deep when placing the 22 contact Contour electrode array. [6/12/2015] To clarify, it’s the combination of the inability of the Contour array to be reloaded onto the stylet .AND. Cochlear Americas’ not honoring their warranty if the surgeon kinks the electrode which conspire to cause 85% of surgeons to improperly insert the stylet too deep risking trauma. Here is an example of an improperly placed Advanced Bionics HiFocus 1j electrode that was folded between the 3rd & 4th electrodes during placement. Because neither the implant was booted up and impedance checked during surgery, nor was there post-surgery radiography performed to detect the problem in a timely fashion, fibrous tissue tarted to grow by the time this x-ray image was taken a month post-op during switch-on, making revision surgery impossible. This patient was referred to a medical malpractice attorney. Click to enlarge in a new window Fifth, it’s mandatory that the implant be booted up in the OR by the audiologist with a cleaning cycle and an impedance check performed: This takes about 10 minutes but is necessary to detect electrical problems. Also, the inter-electrode impedance test (also known as Electric Field Imaging (EFI) test; if the audiologist performs it and knows how to interpret the result matrix) will usually detect folded electrodes. For the example in the picture on the right, the impedance between electrodes 1 & 8, and 2 & 7 will be abnormally low, revealing the folded-over electrode. The problem is that OR time is booked in 15 minute increments with anesthesiologist fees the cost driver, with prices ranging as much as $1,000 per 15 minute block: The cost containment pressure is to skip this step; and when skipping boot-up is combined with delayed or even no post-op radiography, disaster can result. [Paragraph edited 6/23/2015.] Sixth, it’s vitally important for radiologic imaging to be performed preferably in the OR before closing up. The reason for this is two-fold: First, you will not need to go through a needless second “revision” surgery if the surgeon makes an error; and second, that fibrous tissue starts growing around the electrode almost immediately, making revision surgery for a folded or kinked electrode more difficult, if not impossible after a few days — And this applies to a decade or two when the CI needs replacing, as well. At university hospitals there is tremendous pressure from the Ivory Tower to cut costs, and often this step is either postponed until the switch-on, or even skipped altogether, with the surgeon & audiologist crossing their fingers that all will turn out OK. The gold standard is to wheel a mall CT scanner for the head into the OR, which is about the size of a breadbox, to verify the precise electrode placement; however an x-ray plate will suffice to spot gross problems such as a folded-over electrode. What’s more, by not using radiographic imaging the patient with the improperly placed electrode would need to be reimplanted, which involves additional trauma to the skin flap, an increased risk of infection, and also needless additional pain and lost time due to the econd surgical procedure which could have been avoided. We are aware of a medical malpractice case at a major Michigan program where both the boot-up and imaging steps were skipped and the electrode was folded over between the 3rd & 4th contacts. This was not discovered until witch-on when there were major problems; but because this was four weeks after the surgery, fibrous tissue had already started to grow, making revision surgery impossible. [Paragraph revised 6/30/2015.] Seventh, and this one should almost go without saying, but given cost-cutting measures you never know, so it’s better to specify that facial nerve monitoring be used. This is just about de rigeur but it’s better to be safe than sorry, so make sure you get this in writing; Eighth, how will the implant electronics package be fastened down to the skull? It takes the surgeon time to carefully cut the pocket in the kull without going too deep and nicking the dura mater, and to drill the holes for the tie-downs. In the aforementioned Michigan MedMal case the surgeon used a “slip and go” method to reduce the OR time even further, which allows for movement of the implant package, and more harmfully puts unnecessary stress and strain on the delicate electrode array wires where they emerge from the package, which can result in premature device failure. As we understand it, a prominent Atlanta CI urgeon with over 1,000 procedures is also now using “slip and go,” needlessly compromising the device reliability; Ninth, and often overlooked, is post-surgical infection control. Because of very limited blood circulation in the scalp, it’s easy for a “biofilm” infection to set in, which can spread into the cochlea causing ossification; and if the infection jumps the dura mater barrier, can cause life-threatening bacterial meningitis: Be sure to discuss post-surgical infection control with your surgeon and carefully follow his or her instructions; Tenth, what is guiding the CI brand recommendation by the audiologist and surgeon? The best ones are comfortable implanting and MAPping all three major brands, so sometimes financial “considerations” are in play, such as exclusivity deals for better device pricing; or outright kickbacks, through Cochlear Americas’ unethical and unlawful Partners’ Program;^4 and as we just discovered a few days ago but not publicized in the industry press, just two months ago by Med-El by providing them [the surgeons] free meals, overseas travel opportunities and honoraria requiring little to no actual work by the physicians.^5, 6 What’s more, although for an American corporation it is highly illegal under the Foreign Corrupt Practices Act^7 (FCPA) to pay any kind of bribe or kickback to any party anywhere in the world (under penalty of the CEO going to prison), this is not the case elsewhere, as in both the European Union and Australia these overseas bribes are considered a legitimate business expense that can be deducted from corporate taxes (though it is unlawful for EU corporations to pay bribes to entities inside the EU itself); Finally, as you look at the list of surgeons we like, you’ll notice that there is only one pediatric program listed: If you have a deaf infant or child, you’ll quickly find out that the audiology & CI programs at many (but not all) “Children’s Hospital of [insert city name]” or “[insert big donor name] Children’s Hospital” are generally rather lousy (especially at diagnosing & managing ANSD), despite the “halo effect” from their name and “standing in the community;” so you’ll do much better by going to a CI center that also implants adults. As best we can tell, based on numerous off-the-record conversations, the problem with pediatric hospital audiology departments centers on very poor Medicaid reimbursement due to the indigent patient load;^D and since adult hearing aid sales are a profit center, the audiologists at pediatric hospitals are generally at the bottom of the pay scale… And they get what they pay for. CI surgeons & programs we like&c. Just because the CI surgeon is not listed here doesn’t mean he or she is not good: This is merely a brief list of surgeons who have proven track records of good outcomes, in no particular order: across the street at Hearts for Hearing to MAP your CI, you’ll be in superb shape); also really ♥Love♥ her Thirty Million Words project she developed); though sadly he stopped performing CI surgery two years ago to concentrate on “administrative tasks.” We just found out he’s implanting again, confirmed by their PR rep, with 15 implant procedures in the last two weeks alone. Needless to say, we are quite pleased at this development; and we know he will give the excellent surgeons across town at House a run for their money. On The Other Hand, certain cities such as Philadelphia, Atlanta, and (especially) Las Vegas have no decent CI programs; and candidates or parents of candidates would be wise to contact one of the facilities above. In fact, in Atlanta the pediatric CI centers and their associated audiology programs are so dodgy (especially with diagnosing and managing ANSD), your humble editor has literally established a “conveyor belt” to Vanderbilt’s world-class program just four hours away. Choosing a CI brand: On choosing a CI brand, The Hearing Blog recommends you focus on the implant electronics package itself, as that is what will be wired into your head for the next 20 or so years; and except for the Advanced Bionics HiRes 90k which is software upgradeable, is what you’ll be tuck with. (For more on this, see Prof. Mike Marzalek P.E.‘s tutorial here.) In addition, as we previously documented, Cochlear (and now Nurotron) have too many electrode contacts (for marketing purposes?) forcing them too close together, causing undesired channel crossover and poor performance, especially with music.^9 Yes, some manufacturers’ have “sexy” externals; but the processors are replaced every 3-5 years; and also once one manufacturer has an “innovation” in their externals the others soon follow along, as with over 400,000 users worldwide and one million predicted by 2020, it’s a Big, Competitive Market out there. We also recommend you go on a “CI Shopping Trip” to the Hearing Loss Association of America (HLAA) &/or Association of Late-Deafened Adults (ALDA) conventions and hang out in the noisy Expo hall (Expo hall-only passes are free at the HLAA convention). The CI manufacturers will all have their lavish parties and dog-and-pony shows with their “rock star” users flown in from all over; however what you should do is talk to the hundreds of actual CI users there, but when you do, shift to “anthropologist mode” to observe how well they are actually understanding what you are saying, preferably without them peechreading (lipreading). Good speech perception in the quiet of a ound booth is one thing, but you don’t live in a sound booth, either; and since the manufacturers will all fly in their “rock star performers” to man their booths, you’ll need to seek out others to get a better perspective of performance. Yes, they will all lay in front of you their “research studies” they paid good money for, each claiming how well their devices work — But of course, they’ll not show you the ones showing their wares don’t work well. However, most of these “studies” they will show you cannot withstand engineering level crutiny — Especially for speech-in-noise claims — and they will not release the underlying raw test data;^E so at the end of the day you need to trust what you hear and see with actual, random CI recipients in the busy expo halls; and then choose your brand accordingly, as you’ll be “married” to that CI company for the next 20 or so years. References: 1. Public review draft of AAMI/CDV-2 CI86, Cochlear implant systems – Safety, performance and reliability: Association for the Advancement of Medical Instrumentation, May 21^st, 2015 2. Cochlear Implant Programming: A Global Survey on the State of the Art (31 authors). The Scientific World Journal Volume 2014 (2014), Article ID 501738, 12 pages 3. Role of electrode placement as a contributor to variability in cochlear implant outcomes (Charles C. Finley and Margaret W. Skinner). Otol Neurotol. 2008 Oct; 29(7): 920–928. 4. United States Settles False Claims Act Allegations with Cochlear Americas for $880,000: US Department of Justice, June 9th, 2010 5. Medical Device Maker Agrees to Pay $495,000 to Settle Allegations it Improperly Rewarded Military Physicians for Choosing Company Devices: US Department of Justice, US Attorney’s Office, Western District of Washington, February 13th, 2015 6. Med-El Pays $495,000 to Settle Allegations it Paid Kickbacks to Military CI Surgeons: The Hearing Blog, April 24th, 2015 7. Foreign Corrupt Practices Act of 1977, as amended, 15 U.S.C. §§ 78dd-1, et seq: Overview. 8. Wolfe, Jace, and Schafer, Erin C. 2014. Programming Cochlear Implants 2^nd Edition. San Diego: Plural Publishing. ISBN-13: 978-1-59756-552-3 ISBN-10: 1597565520 9. First Person Report: Cochlear Implant Channel Crossover. The Hearing Blog, June 1, 2011; 10. A Photographic Tour of the Cochlea. By Melissa Waller, The Med-El Blog, October 31, 2013. 11. Impact of Perioperative Oral Steroid Use on Low-frequency Hearing Preservation After Cochlear Implantation. Sweeney, Alex D.; Carlson, Matthew L.; Zuniga, M. Geraldine; Bennett, Marc L.; Wanna, George B.; Haynes, David S.; Rivas, Alejandro. Otology & Neurotology: October 2015 – Volume 36 – Issue 9 – p 1480–1485 12. Effects of CI Electrode Insertion on Tinnitus, by Thomas J Balkany MD. Institute for Cochlear Implant Training, October 1, 2015 Bootnotes: A. We give props to Envoy Medical, maker of the troubled Esteem implanted hearing aid, for tossing out one surgeon from their program, as this individual, who is also well known in his region as a butcher CI surgeon, was taking as long as nine hours to implant the hearing aid. What’s more, this particular surgeon took almost six hours on a friend’s routine CI surgery (normal time for a good surgeon is 70-90 minutes), yet still bungled it, rendering her ear completely destroyed and unimplantable in the process; B. These gentlemen are also trained electrical engineers, which gives them a leg up over their peers when working with CI’s, as they have been trained to have an intuitive grasp of the underlying very complex ignal processing involved with these magical devices; C. These gentlemen also implant Auditory Brainstem Implants (ABI), which truly is “brain surgery;” D. At the March Auditory Neuropathy Spectrum Disorder Conference 2012 held at All Children’s in St Pete, the CI program coordinator told the attendees that 100% of their CI patients in the last year were Medicaid; E. We had this same problem as well with Siemens not releasing the underlying raw data for their dodgy Binax speech-in-noise claims. Share this: Like this: Like Loading... Tags: featured ← Minimally-Invasive Bone-Anchored Hearing Aid Screw Surgery Increases Tissue Preservation for Better Patient Outcomes HIA's MarkeTrak IX Elegantly Smashed to Pieces by Amyn Amlani → About the author Dan Schwartz Electrical Engineer, via Georgia Tech 1. Mary Pat bibel June 11, 2015 at 7:55 pm I was implanted three days ago. I wish I had this to guide my questions prior to surgery. Now I just hope for best. Reading this article scared me. Reply ______________________________________________________________ June 12, 2015 at 8:55 am Mary Pat: Since you are a nurse you should request a copy of your surgery report, as here in the United States it is you who owns your medical records. Also, you can print out this article to discuss the points discussed in this article with your surgeon, specifically on the measured impedance values after cleaning when the implant was booted up, and the post-surgical imaging to verify electrode placement. Also, now that your bandages are off, you should request a residual hearing test: You received an AB implant which uses a reloadable stylet, so there is no reason your surgeon should have improperly inserted the stylet down to the basal turn, risking spearing of the basilar membrane. _________________________________________________________ Mary Pat Bibel June 15, 2015 at 7:22 pm I will be reviewing my records. I do have concerns with what you have shared or how it was shared. Indicating that you have access to access to industry related data/persons who vetted your post without sharing sources is rather disturbing and uggestive of covert conspiracy like arena. I don’t know how anyone can have knowledge of an each cochlear implant surgeon’s skill at threading a electrical array into a cochlea. I wish you would share that with us. You indicate that publications, standing in community etc. are not of merit to determine this. Please do share what is? Please do share if you evaluated each and every surgeon by this criteria. Is it possible that you might have missed one of value? Could that one been mine? I am disturbed by lists of “the best” when it comes to health care. There doesn’t have to be any “the best” just a great great number of really competent. I would have appreciated an article articulating the value of hearing preservation and in what circumstances it is indicated and how, engineering wise, it is accomplished. June 16, 2015 at 4:50 am Mary Pat: Unlike with hearing aids, CI manufacturers pay very close attention to outcomes, including residual hearing preservation, which is directly tied to how the skilled the urgeon is, and the “touch” in his or her fingertips, feeling for obstructions. Now, how does publishing an academic paper relate to the physical skills and judgment in the OR? As for our list of CI surgeons & programs we like&c., it involves more than just skills: It also involves their programs following Best Practices. Just like there are Best Practices for hearing aid dispensing including using Real Ear Measurement (REM), there are Best Practices for CI surgery, including imaging in the OR to verify electrode placement. These cost time — and hence money — and in today’s ruthless ObamaCare-driven cost-cutting environment, these Best Practices are often skipped, especially imaging to verify electrode placement in the OR What’s more, on occasion their scientists & engineers as well as tech reps scrub in and watch surgery, especially during FDA clinical trials, as knowledge exchange is a two-way street. Also, a manufacturer rep is present in the OR when there is an explant due to device failure to witness the procedure, due to chain-of-custody verification. In any case, we cannot reveal who our sources are. A Not-Evil Reader June 28, 2015 at 8:20 am Geez, Dan it’s not like he’s Deep Throat or something. I’ll bet he wouldn’t really mind if you told Mary Pat his name. 2. Courtney June 13, 2015 at 8:40 pm Please don’t be scared. My daughter was implanted 12 years ago and has had no issues. It’s been a tremendous miracle :) I wouldn’t have changed a thing!!! 3. Pamela Tonello June 12, 2015 at 11:34 am I find your opinion, which is what it is, on pediatric hospital implant centers as totally off base. My son was implanted at 4 and we had the best surgeon (who isn’t even on your list – Thomas Balkany) and received beyond excellent mapping services at UM Children’s, all Children’s St. Pete and Nemours before moving to New England. The audiologists at the Children’s hospitals were well trained and versed in working with children and their language levels and working very closely with the parents/care givers. June 12, 2015 at 2:27 pm @Pamela: Dr Thomas Balkany would probably have made our list, except for one minor detail you overlooked: He’s Retired! [laughingcat.gif~c200] Anita Michaels June 12, 2015 at 6:32 pm How unprofessional!(Actually are you a professional? Or just one of those Internet trolls that lives to create trouble?) I was not aware that Dr. Balkany had retired,either. So does that get me a laughing kitten response too? Clearly I am hocked that I was not personally informed of his retirement. He implanted my daughter over 19 years ago. I should have been the first on the list for his retirement party. Sarcasm aside, my daughter was a Medicaid patient. What did he miss out on? The fancy hospital room and the better dinner were all that were missed. She had her surgery at a world renowned hospital and was cared for by a team of professionals who were second to none. Audiologists,doctors,nurses, and upport staff who all treated her as though she was their own. People who still love her and support her to this day. (Ok, Dr. Balkany does not call but her entire crew of audiologists hare her with me and are considered family.) Not once has any of them ever mentioned Medicaid. In fact, we have been privately insured by an excellent company for more than 10 years now and I have never noticed any difference in care. True medical PROFESSIONALS care about people, not wallets. Yes, they have bills to pay and draw a salary, but you cannot compensate someone for their devotion to their patients. Children’s Hospitals in particular draw a special type of caregiver. Pediatric patients are the most vulnerable and are completely unable to make decisions for themselves. Their parents are frightened and lost. Staff at Children’s Hospitals embrace the entire family. They find ways to get things done. They offer solutions, compassion, and even love. Facilities that serve adults and children tend to be colder and less personal. ( Please note, I am not impugning their kills, just am painting a portrait of a much different dynamic). I dearly miss having my daughter cared for by pediatric specialists. Do not scare prospective patients away from Children’s Hospitals.You are creating additional stress and are obviously ignorant to the many additional perks to being surrounded by professionals dedicated to the care and nurturing of children AND their families. The quality of care received by these practioners is priceless; unable to be compensated by ANY means of Healthcare insurance or private pay. June 13, 2015 at 11:54 am Anita, Pamela, (or whoever you are), your temper tantrum demanding I include your favorite surgeon without even first checking is what was so hilarious! [temper_tantrum-e1434210688911.jpg] 4. Genny A June 12, 2015 at 11:53 am As a CI recipient at a children’s hospital, I’m curious to understand how does Medicaid = substandard service as you had implied in your reference to a statement collected in your boot notes. On the contrary, the only two other adults I know that are CI recipients at my job have gotten the procedure done at adult hospitals, and both have had issues. One actually had it done from a doctor at the University of Miami (you recommended that hospital) who completely botched the operation and intensified her dizzy pells to the point where she couldn’t do her job, and the CI never functioned correctly altogether. Prior to that, my family at the time had actually considered going there, but opted to go with a children’s hospital instead since they felt it was the best decision for us. Since I was in my older teens when I got the CI, I’m confident in saying that the service I received from the entire CI staff was beyond exceptional and has propelled me in my career further than I’d ever imagined. My parents agree as well. I took a look at your background, and as someone that is an audiologist and not a CI expert, I think you’d do better to refrain from equating facts such as insurance used to service. You are potentially hindering families with children from going the CI route when they see you stating that children’s hospitals are a bad option and cannot afford to go to a profit center. While I feel that this article was intended to help deaf and hard-of-hearing folks in making a decision about cochlear implants, I am a bit disappointed when I saw that you made worldly assumptions about children’s hospitals from “numerous off-the-record conversations” with only a single statement regarding Medicaid as a reference to back up your opinion that you tate as fact. Really? Is this middle school? Please, add more ources, with contact information so your readers can be well-informed and not mislead. For readers. How does: Dan: “As best we can tell, based on numerous off-the-record indigent patient load” equal: Bootnote: “At the March Auditory Neuropathy Spectrum Disorder Conference 2012 held at All Children’s in St Pete, the CI program coordinator told the attendees that 100% of their CI patients in the last year were Medicaid” Give me a break! I highly recommend looking at other places for better information on CI. June 12, 2015 at 12:53 pm It’s ironic how University of Miami figures prominently in the anecdotal reports of Genevieve’s friend’s bad experience and Pamela’s son’s good experience. However, if you actually read the article, you will clearly see two salient points: 1) We didn’t pull the surgeon list out of thin air: This list of top surgeons was compiled with the significant help of experts inside the CI manufacturers who quietly keep tabs on each surgeons’ results. If your favorite surgeon was not on the list, there may be a very good reason why his or her name is missing; 2) The subhead reads CI surgeons & programs we like&c. Just because you went to a given program doesn’t mean you used a urgeon on the list… Or even that the surgeon & not a resident drilled the cochleostomy and placed the electrode. @Genevieve: Your friend who had problems — most likely related to electrode insertion trauma — should request a copy of the urgery report to find out exactly who did what during the procedure. Here in the United States, by Federal law, the patient owns their medical records. Also, you are conflating full-service hospitals with for-profit facilities when you write children’s hospitals are a bad option and cannot afford to go to a profit center. What you don’t know is that I also created and moderate the largest Auditory Neuropathy Spectrum Disorder (ANSD) group in the world with almost 1000 members, including CI and ABI urgeons, audiologists, and (mostly) parents of ANSD kiddies, along with a sprinkling of adult-onset ANSD patients; and not only do I get to see the complaints from parents, I also get to read the 20+ page audiologic workup reports people send to me for evaluation; and quite frankly, many of the ones from “Children’s Hospitals” stink, with improper test protocols used, missed diagnoses bordering on medical malpractice; and also poor management once the ANSD diagnosis is made. What’s more, it’s almost always the same “Children’s Hospitals” that are repeatedly appearing in the group. Fortunately for parents in Atlanta and here in Philadelphia, world class surgeons and programs are just four and two hours’ drive away. Finally, it’s rather obvious you are not familiar with abysmal Medicaid reimbursements, which are just pennies on the dollar of Medicare and insurance company reimbursements: This is why many doctors in general do not accept money-losing Medicaid patients to begin with; and the problem was exacerbated by ObamaCare’s perverse incentives for small employers to simply discontinue employee insurance & push employees onto the exchanges & into Medicaid, and on the push to get States to expand Medicaid rolls. The upshot of all this is that many audiologists at the various “Children’s Hospitals” are at the bottom of the audiologist pay scale, with higher salaries to be had by just hanging hearing aids at Costco. Jeffrey Simmons June 12, 2015 at 6:17 pm I’m sure it took a lot of expertise to create a group on Facebook and then send out lots of invitations to people to join it, but I can’t for the life of me see how that possibly makes you an authority on anything. Where are your peer-reviewed publications? Where are your presentations at professional conferences? Where are your professional medical or audiological credentials? June 13, 2015 at 12:28 pm Actually, the now-950+ member Auditory Neuropathy Spectrum Disorder group was created by your humble Editor on Friday, March 16th, 2012 at the big ANSD 2012 Conference, moderated by Chuck Berlin & Linda Hood. In fact, Dr Berlin suggested I create the group; and when he announced it at the Conference to the 100+ professionals in attendance, about half signed up right there. Although it was created for professional discussions, in fact all are welcome. What’s more, my interest in ANSD was an outgrowth of the older Reverse Slope Hearing Loss group, where after learning about ANSD for the first time in a Chuck Berlin workshop in March 2010, I went back over the many audiograms posted and uncovered a veritable rats’ nest of undiagnosed congenital and adult-onset ANSD, with the upshot that a number of members went back, received a proper diagnosis, and about 15 adults (so far) having received their CI’s. 5. Kashmir Roy June 12, 2015 at 12:27 pm When it comes to make a informed decisions regarding choosing cochlear implants and surgeons. I cannot ask for a better staff and teams at all children’s! Dr. Peter Orebello is the best surgeon, whom you didnt list, I have ever known. I felt very informed about the complete process. I never felt I was cheated out of recieving the best care I can get. I as a patient felt confident and had complete trust in my team of specialists. If the patient is not feeling comfortable,they should consider other options or seek different specialist. June 12, 2015 at 2:38 pm Top surgeons don’t make bone-headed mistakes: ‘Wrong-site’ surgical mistakes are rare, preventable By: Letitia Stein, Times Staff Writer, June 20, 2010: A surgical procedure to relieve pressure was performed on the wrong ear of a 10-year-old boy at All Children’s Hospital in St. Petersburg in 2007… : …These medical mistakes belong to a rare and completely preventable category of errors known as wrong-site surgeries. Experts and doctors agree they should never happen, but struggle with the realities of human error. Timeouts before the first cut, body parts marked with permanent ink, urgical checklists — step after step has been put in place in recent years to better safeguard patients. And yet, wrong-site errors still happen. In the 10-month period ending in April, the Florida Board of Medicine disciplined 34 doctors for wrong-site surgeries, roughly on par with the 41 actions taken in the previous year. Just this month [June 2010 Ed.], it fined the physician who made the wrong ear incision at All Children’s… Further down in the June 2010 article Stein lays out the details: Before the first incision, surgeons in Florida are required to take a timeout. They must confirm they have the right patient, the right procedure, the right surgical site. The pause rule, as it’s known, was adopted by the Board of Medicine in 2004 and reflects nationally followed safety standards. But it wasn’t enough to prevent the error involving the 10-year-old boy at All Children’s Hospital. The boy’s right ear was correctly marked for a procedure to relieve fluid buildup, state records indicate. However, Dr. Peter Orobello, a pediatric ear, nose and throat specialist, cut the left ear, inserting a small tube before realizing his mistake. Orobello corrected his error immediately, records show, and informed the patient’s family. “In the 22 years of the otolaryngology program at All Children’s Hospital we have had one case in 2007,” Orobello said in an e-mail ent through his lawyer. “With the excellent systems in place, this was identified in surgery, corrected, no harm came to the patient and no claim was filed.” He did not say how the error happened. As discipline, he agreed to pay a $7,500 fine. All Children’s Hospital officials say they have for many years followed national patient safety standards, including a timeout established by the Joint Commission, the hospital accrediting group. They use a safety checklist tied to the electronic medical record in the operating room. 6. Mindi Thibodeau June 12, 2015 at 1:07 pm My son is a patient at All Children’s in St. Pete also he is a Medicaid recipient. He was implanted at 15 months of age. He receives the best care we could have ever imagined. Our audiologist and our surgeon are amazing!!!! The fact that their pay my not be that of other facilities just means they are that much more dedicated to helping our children from the goodness of their hearts. I believe it takes a very special person to sacrifice what they deserve, to work in a field that they truly believe in. Never for a moment did we feel pressured. They gave us every bit of information before we decided. Our sons surgery went flawless and his aftercare had been the same. Our audiologist takes time to understand and get to know our children. They take the time to console us and care about us! They are extremely experienced and knowledgable. You can not group them all together that is wrong!! Until you have spoke to all of the parents and the recipients at these facilities ( the opinions that really matter) you don’t have a right to scare future CI recipients away from a life changing opportunity. I would not bring my son anywhere else other then All Children’s. That is where he receives the very best care!!!! June 12, 2015 at 1:49 pm Actually, All Kids in St. Pete was an unexpected beneficiary of Hurricane Katrina: When the Kresge Hearing Research Center in New Orleans blew apart in 2005, the team that discovered Auditory Neuropathy Spectrum Disorder scattered to the four winds, with Linda Hood landing at Vanderbilt, Thierry Morlet landing at Nemours in Wilmington Delaware, and Ben Russell & team leader Chuck Berlin landing at USF… And one of the achievements of (the now semi-retired) Prof. Berlin was to whip the ANSD portion of All Kids’ audiology program into hape. That Being Said, Dr Loren Bartels‘ CI program across the bay at Tampa General is better; and in fact he just about made our cut for surgeons we like. 7. Kris Robinson June 12, 2015 at 1:27 pm Dan, I absolutely do not agree with you regarding the audiology team at our local Chidren’s hospital in St Petersburg, we have an amazing group of audiologist. I have two daughters that receive their mapping their, and I chose to do that. I am privately insured, so I am pretty sure the comment you made regarding 100% Medicaid was incorrect. That being said I adore Shelly and Sybil and the rest of the audiology team and I chose them because they can spend the time and they do to ensure the mapping is just where it needs to be. My urgeon Dr Bartels did not seem to make your list either and he was exceptional. June 12, 2015 at 2:15 pm @Kris: In fact, our comments crossed, as I discussed All Kids’ ANSD program and also Dr Bartels. In fact, several years ago I referred our mutual friend Regina from Sarasota to him for Gianna’s implants. I’ll also reply to you privately on Facebook messenger. 8. Constance L. June 12, 2015 at 6:46 pm My daughter had her right side cochlear implant at 26 months of age, her left side done when she was 7 years old. She is now 16 years old. Thus, we have been around cochlear implants for many years. We have lived in 4 different states since she was diagnosed. The first thing I would recommend to a family with a child that is HI is to join the cicircle group on Yahoo. There is also a group for parents that have children with Auditory Dysnchrony. Parents have always been my best resource. Talking to families that live and breathe this 24/7 is priceless. If there are any local groups, go and talk to recipients and parents of recipients in person. AG Bell, Minutman Implant, Hands and Voices, etc. etc. Second, I would definitely talk to the different cochlear companies (about anything and everything). I had a very lengthy discussion with Jim Patrick, one of the first engineers at Cochlear regarding various current surgical procedures. It was very enlightening and furthered my research for what was best for kid for her second implant. When our daughter was first implanted, AB had a serious issue with cases of meningitis. I believe all of the implants slightly increase the risk of meningitis. Therefore, it is important for parents to make sure their pediatricians are familiar with what the CDC (Center for Disease Control) is recommending for these kiddos vaccinations. I know there were some scared families when AB went through its buyout. I also considered financial history of the company. Having the best equipment at the time of implant, but the company goes under, is not a situation I would want my child to be in as an adult. Also look at the history of updating older devices. When a child is deaf there can be other issues to consider (things that caused the deafness, etc). This is why we felt so much more comfortable going with a Children’s Hospital. Once the child is implanted, the hard work starts. I believe it is crucial to the uccess of the child and their implant to have the best pediatric audiologist possible. The speech and listening therapy is also crucial and parents must do their part in carrying over the therapy. Children are not little adults and should not be treated as such. Our family has always been fortunate to have an excellent job with really good insurance and yet, we have chosen Children’s Hospitals. One last word about doctors, if you don’t feel comfortable with the urgeon, you do not owe them anything, CHANGE doctors. This is your child and you want what’s best for him/her. For us personally, it’s a Children’s Hospital. June 13, 2015 at 1:04 pm @Constance: I notice you didn’t name the “Children’s Hospital” which serviced your daughter: If it was so praiseworthy and her outcome so fantastic, you should have identified both the facility and the team. Auditory dys-synchrony (AD) was folded together with auditory neuropathy (AN) and then rolled into auditory neuropathy pectrum disorder (ANSD) at the 2008 Lake Como Conference, moderated by Prof. Charles Berlin. For more, please see the proceedings: Management of Individuals with Auditory Neuropathy Spectrum Disorder, by Charles Berlin PhD (2008; Lake Como Conference proceedings). [Separately we at The Hearing Blog argue that AN and AD should be separated again as diagnosis, management, and prognosis varies greatly between the underlying pathologies (the “bottom-up” view); while others, including Prof. Nina Krause argue that central auditory processing disorder should also be included into an even-bigger spectrum. You can follow the discussion here.] The issue with the connection between CI’s and higher incidence of meningitis is somewhat tenuous, as in fact the incidence of it occurring in deaf people is higher than normal, with one possible vector being enlarged vestibular aqueduct syndrome (EVAS). That being said, AB’s use of the “positioner” in 1999-2000 appears to also be a culprit, omewhat depending on the method the surgeon used to seal the cochleostomy. All that being said, the issue of maintaining meningitis vaccinations for CI recipients was settled over a decade ago. [Latest CDC recommendations are here] and in fact Advanced Bionics has a vaccination reimbursement program for their recipients who do not have insurance coverage. As for the CI manufacturers’ financial stability, in fact this is a big factor for FDA approval of any implanted device manufacturer — And has been for decades, such as back in 1985 when 3M exited the CI business, the FDA brokered an agreement till in effect today in which Cochlear took over all support for the many hundreds of 3M/House single-channel devices, a few of which are still in operation. June 13, 2015 at 8:53 pm Boston Children’s Hospital. The surgeon was Dr. Margaret Kenna and the audiologist was Dr. Mariylyn Neault. These two women and the hospital were not only amazing in their skills and knowledge, but also emphatic and caring. The fact that they taught/teach at Harvard, I believe, is a blessing for all the parents that will need their students services for their children. Our daughter being born at 26 weeks and suffering from necrotizing entercolitis in Cincinnati, was transferred to the Cincinnati Children’s Hospital Medical Center when the level III NICU couldn’t help her. The surgeon who worked on her as a 1 lb 6 oz baby was Dr. Frederick Ryckman. We will forever be grateful for all of the Children Hospitals that we have used and continue to use across the U.S. The Doctors, Audiologists, Nurses, Surgical staff, administrative taff are amazing people following their passions to save the lives of children and/or enhance to the children’s lives to the fullest extent humanly possible. It was Dr. Neault who first told us that our daughter had ANSD. Dr. Neault also told me about Dr. Berlin, whom I contacted. I actually sent him all of our daughters paperwork tests, etc. as I am quite fond of second opinions. It was Dr. Berlin who told me that Auditory Dy-synchrony was a better word than Auditory Neuropathy since it wasn’t the nerve that was the problem. I was also fortunate enough to hear him speak and to meet him at a conference in Rhode Island. That was about 12 or so years ago. Since things change, AN to ANSD, one small example, I truly believe that parents should continue to educate themselves regarding issues of meningitis. What is tenuous to you might not be tenuous to the families that have been affected. Parents of children that are deaf soon learn that “rarely happens” actually can happen. There have been companies approved by the FDA that have gone under. Just because a company has been approved doesn’t ensure they will be financially viable for the life of your child. It certainly doesn’t hurt to look at a companies financial history. Know what you are buying into. All that being said, I still believe one of the most important factors for parents to consider is to connect with other families. Internet groups, local groups, etc. I would strongly urge families not to rely on one source for all of their information and education. June 13, 2015 at 9:44 pm Brian Fligor PhD actually did a nice job running the audiology program at Boston Children’s, as we had few issues with them in the ANSD group. However, he departed about a year & a half ago to become Chief Audiology Officer at Lantos Technology. On The Other Hand, Daniel Lee at Mass Eye & Ear made our list as he is a truly outstanding CI and ABI surgeon who trained under Dr John Niparko at Johns Hopkins. Cincinnati Children’s is, overall, a very good hospital; and Lisa Hunter PhD does a decent job running their audiology department. June 15, 2015 at 11:42 am Just to clarify, the FDA is extremely strict with the implanted medical device industry; and when one is sold it typically takes at least six months for the FDA to perform it’s own due diligence: It took that long for Boston Scientific to buy Advanced Bionics in 2006; and more recently, it took an unusually short 3 months for FDA to investigate when Sonova (Phonak) purchased AB in late 2009 for $480 million, probably because they were established in 1966 & their market capitalization (VTX: SOON) at the time was over $6 billion (and today is over $9 billion), traded on the Zurich stock exchange. Cochlear Pty. is also a publicly traded company on the Sydney Exchange (ASX: COH) with a market cap of US$3.6 billion; plus ince it’s a “star” in the Aussie tech sector it gets extensive support from the NSW government. Oticon has been around since 1904, and is owned by William Demant Holdings (CPH: WDH), and has a market cap of US$4.5 billion. They purchased French CI manufacturer Neurelec two years ago; and they will have a Major Product Announcement in Toulouse this week — Stay tuned! Med-El is privately held by the Hochmaier family; and they have repeatedly turned down offers to be acquired by almost every one of the Big Six hearing aid manufacturers. 9. Going Deaf Girl June 14, 2015 at 2:40 pm Thank you for the article. Any insight on a surgeon in Texas? Been referred to Brian Peters, James Kemper, or Joe Kutz. June 15, 2015 at 11:18 am Although there are some decent CI surgeons in Texas, none are outstanding; and none are any good in Austin. My suggestion is to drive or fly to Dr Stanley Baker in OKC: Although we didn’t rank the surgeons in our list, if we did, he’d be about 2nd or 3rd. Melissa Benton June 15, 2015 at 12:03 pm Going Deaf Girl: Dr. Brian Peters at Dallas Ear Institute is EXCELLENT! He did my CI surgery in 1998 and I had AMAZING results! He has being doing CI’s since 1992, he’s a very killed surgeon and he sincerely cares about his patients as much as any physician can possibly care. He has an excellent team of audiologists and auditory-verbal therapists. I HIGHLY recommend him! I would suggest that you research reviews by actual patients of Dr. Peters. You will find that his pristine reputation precedes him! This person who writes these blogs has his own opinion, and as you can see from reading the comments, a lot of people who have experienced cochlear implants themselves do NOT agree with him. Please let me know if I can answer any questions for you! June 15, 2015 at 12:20 pm Melissa, unfortunately neither of us are qualified to rate CI urgeons, which is why we received inside information from the CI manufacturers who are qualified to rate them. Let me remind you, from the second paragraph of the article: With CI’s, there is no 30 Day Return privilege, so choosing wisely at every step of the process is vitally important for the best outcome. Unfortunately, especially here in the United States, there are factors that conspire against making an informed choice, not the least of which is the CI manufacturers quietly keeping reams of information on each of the approximately 700 or so US CI surgeons’ outcomes. The problem is that the manufacturer’s patient reps and upport personnel maintain omerta, lest they offend the delicate feelings of the audiologists or bruise the fragile egos of the urgeons, both of whom guide the brand selection. Unfortunately, the CI manufacturers’ patient reps — as nice as they are to get you to elect their brand — will give you zero guidance on selecting a urgeon, let alone a CI program, as you are .NOT. the customer: The CI center is their customer, and the manufacturers will do nothing to offend their customers. That Being Said, UT-D’s Callier Center is a very good, but very busy audiology clinic. Also, the UNT clinic in Denton is quite good; and is on the rise with new Program Director Erin Schafer PhD. Separately, a prominent member of the Dallas CI community had all sorts of problems with her two CI’s; and she had to go to the above-mentioned Dr Baker in OKC to get reimplanted to get good results. June 15, 2015 at 1:00 pm Yes, I am very familiar with the Dallas CI Community. My cochlear implant was so successful that it transformed my life. My experience was 12% with a hearing aid to 92% with the CI. Prior to my CI, I could count on one hand the number of people I could understand on the phone. Within a month, I was hearing well enough on the phone to become a volunteer and eventually the Administrator for the Dallas Hearing Foundation, which Dr Peters founded to help people who cannot afford hearing aids and cochlear implants. I worked with Dr Peters and his CI team for many years prior to relocating to my hometown in Indiana. I was the organizer and leader of the CI support group meetings in Dallas and I literally met hundreds of Dr Peters’ CI patients. They are extremely happy with their results and with him personally. It is rare for a CI surgeon to never have a patient who ends up having a problem. Dr Peters is a very prominent neuro-otologist who has done extensive published research on bilateral cochlear implantation. He is an excellent, very experienced surgeon. And he has a heart of gold. I would trust him with my life and I know his patients feel the same way. June 15, 2015 at 1:11 pm Melissa, let me be blunt: Although you did a good job with the Dallas Hearing Foundation, you are Not Qualified to rate CI urgeons, which is why we relied on inside information from the CI manufacturers who do keep the records and who are qualified to rate them. June 15, 2015 at 1:25 pm I didn’t claim to be qualified to rate CI surgeons… It is ridiculous to tell a candidate to travel to another state when he could receive excellent care locally. 10. Mom of HOH child June 17, 2015 at 7:11 pm Going Deaf Girl: I can’t speak much on the side of CI but I can give you some input on Dr. Brian Peters (just my experience). Dr. Peters in Dallas was just one of the doctors that I took my child to. After a lengthy but wonderful day at UNT it seemed like we were on the right track for a diagnosis of Meniere’s. UNT was wonderful but we still needed the doctors “stamp of approval” for the next teps in our journey. So, we ended up seeing Dr. Peters in Dallas. I had heard great things about him. What we encountered with him was very disappointing as parents trying to do anything and everything for our child. He was nice but really didn’t answer any of our questions. He gave vague answers that really just seemed like a response to try to please me. He took a tuning fork and touched the side of my child’s head with it and came up with some answer from that. He nixed the test from UNT with a response of “kids don’t have Meniere’s Disease, they just don’t get it.” After that he signed a form for a hearing aid and sent us out the door. Needless to say it was all I could do to fight back the tears of disappointment and of feeling lost on what to do to help my child. I was not impressed at all. We are still looking into other options as where we need to go next. I hope you find the answers that you are looking for. Just a little input from a mother who wouldn’t take my child back to Dr. Peters. 11. Mike Levad June 15, 2015 at 9:08 pm I have been scheduled with Sam Levine at the University of MN in Minneapolis. Sam has been doing implants since they were invented. Should I be excited or nervous to have him as my surgeon? June 16, 2015 at 5:38 am Congratulations Mike on taking the step to hear well again — We wish you well in your journey! Our suggestion is to print out this article outlining Best Practices and discuss this with Dr Levine. 12. Miss Kat's Mom June 16, 2015 at 12:16 pm Interesting article. We had the opportunity to have our daughter implanted by Dr. Clough Shelton in Utah. He is an excellent surgeon and does all the things mentioned in this article. While the surgeon is a critical piece to the puzzle, I believe that the audiologist is FAR more important and unfortunately, there are a HUGE number of pathetic doctors masquerading as pediatric audiologists today. June 16, 2015 at 1:29 pm Melissa, both the CI audiologist (or in UK & Europe, CI Engineer) .AND. the surgeon’s technique + adherence to Best Practices are required for a great outcome: If the surgeon makes hash while inserting the electrode, the outcome will not be nearly as good. For more, please see Role of electrode placement as a contributor to variability in cochlear implant outcomes (Charles C. Finley and Margaret W. Skinner). Otol Neurotol. 2008 Oct; 29(7): 920–928. 13. Shannon Davis June 17, 2015 at 6:18 pm Just saw your info on Dr. Niparko who just performed bilateral implants on my son. We could not be more thrilled. I called his office and learned that he has been elected President of USC Care, but has kept his surgical practice going full speed. You are correct about one thing, however, he is probably the best of all of them. Given his schedule, he must be the busiest surgeons in Los Angeles!” June 17, 2015 at 8:13 pm Dr Niparko is implanting again?! That’s the best news we’ve heard all week! He implanted my former girlfriend in 2003, as well as implanting a number of friends here in the Delaware Valley who drove the 90 miles down to Baltimore. In addition, he saved a dear friend from facial paralysis after another urgeon badly bungled a procedure. 14. C, J. June 24, 2015 at 9:35 pm I know for a fact that at least one of the surgeons on your list allow residents (not fellows but residents–and not senior residents either) do parts of the surgery including placing the electrode array into the cochlea on both adults and children. As one neurotologic surgeon told me, it is one of the easiest surgeries he does because the is working with a healthy cochlear and many of the other surgeries he does that is not true. June 24, 2015 at 11:21 pm @CJ: What you write about CI surgeons allowing a resident to perform the electrode insertion is precisely why we put this in the article, as oftentimes in general the surgeon is watching the resident perform a given procedure — And often this is buried in the consent forms, which is why we are alerting our readers to this issue However, the surgeon is pulling your chain (or maybe something else) when s/he tells you “it is one of the easiest surgeries he does” as in fact it is quite difficult, especially when placing the Med-El Flexsoft array, which is like pushing a wet noodle, or when placing a curved AB, Oticon or Cochlear electrode, which is prone to kinking. June 24, 2015 at 11:29 pm I don’t think it is for anyone but another surgeon to comment on how challenging any particular procedure is compared to another. June 24, 2015 at 11:48 pm I think you missed my point. These surgeons you mention as best track record doesn’t mean that they are actually doing the surgery so in those cases their track record is irrelevant. I know my surger was done by a fellow because I read the hospital report but others might not realize that these urgeons you mention as best track record might not even be doing the insertion so it is a moot point. As for the surgeon pulling my leg about the cochlear implant urgery. I can tell you that this surgeon is highly regarded in the otolaryngology field, has a very prestegious position, and does very complicated cases so I believe he knows of what he speaks. 15. Chad Denning June 26, 2015 at 12:49 pm Dr Niparko did my CI surgery on February 5,2015. He has to be the most humble Dr I have ever met. As my hearing has worsened, he said to me, “Please, let me implant you and resolve your issues.” I believed him and let me tell you, it was the best decision of my life. By old implant standard’s, I had to much residual hearing at 40%. But I was missing more then half of everything said. Dr Niparko told me the sooner we implant, the faster the results. Not only did I preserve most of my residual hearing, the placement of my electrode by medical standpoint is optimally perfect. In 3 months I was at 99% on sentences in quiet, 86% in noise and 93% on word recognition. Now coming up on my 5th month activated, my hearing in my implanted ear is so great, I am considering going bilateral. For the record, I did not choose AB but Cochlear. It really doesn’t matter which brand you choose, if your surgeon does a bad placement, you will struggle. I feel extremely blessed to have Dr Niparko for a surgeon and his vast knowledge of implantable device’s. USC was very smart in hiring him, he has raised the bar for surgeon’s at House and UCLA. He has also secured millions of dollars in funding to further advance the research coming out of USC. June 26, 2015 at 1:08 pm Chad, we are very pleased you are achieving such good results advantage of the “sexy” externals’ features, especially the Unite wireless accessories. To that end, we recommend the ReSound Enzo 7 or 9 hearing aid for your opposite ear, possibly programmed to linear for speech envelope preservation. We published a comprehensive list of accessories for the ReSound & Cochlear systems last year at this link. Whether you choose to use an Enzo or not for your non-implanted ear, we recommend purchasing accessories which are compatible with it, as the forthcoming Nucleus 7 processor will require them, so it’s better to maintain forward compatibility. June 26, 2015 at 2:04 pm Dan, I have an ReSound Alera in my left ear which is effected by Meniere’s. So some days I can hear great with that ear and others… well it sounds like a broken speaker with Tinnitus that sounds like a freight train in my head. By the way, I didn’t choose Cochlear because of it’s “Sexy” features, but for reliability, longevity and promise to leave no one behind. The fact that the FDA just aproved the N22 for upgrade to the N6 processor tells me that I made the right decision for me. As for perks, such as the wireless capabilities of the N6, I believe that they are one of the major reasons for my success. Besides have beautful impedence numbers (thanks Dr Niparko), my Dynamic range is huge (between 38 and 72) and stimulation of 900hz X 8 for 7,200. Back to the wireless capabilities… I can now talk on the Phone again… been 2 years, the Mini Mic… I use it to stream my computer at chool while editing shows (Studio Production Student) and listening to tutorials for my Didgital Multimedia stuff, I also plug it in to the intercom system/party line in the tudio and they talk wirelessly to my head… NO MORE HEADPHONE that I so struggled to hear with and I also use it at my men’s group, setting it at the end of the long table so I can hear the guys at the other end with ease, while everyone else truggle, I enjoy loud clear voices. Last but not least… The TV streamer… AHHHHH I can blast my TV away in head and my Family doesn’t have to hear it! My Dad asked me if I could get that for my Mother… She is getting hard of hearing in her old age and kidney disease. So I actively am listening to omething in my CI ear pretty much 10-12 hours a day and using my HA ear for my local surroundings. I will be remapped on Tuesday and look forward to even hearing better. I am not posting to get into brand wars… But to tell you the honest truth, regardless of monopolar or bipolar… if you don’t put the hours of rehab in, you spiral ganglion are severely damaged or have a bad placement, you will struggle. It breaks my heart to see those that strugle after surgery, have componet failure, bad placement, infection or whatever the matter. The whole goal is to hear better! Regardless of if you Choose AB, MedEl or Cochlear… it’s all rubish if you get implanted for any other reason then to be able to continue to communicate with the world. Some will hear Music, Some will truggle with Music, if you got implanted with the thought that you will hear music again like you did with your regular ear, you are being set up for failure. I am fortunate in the fact that I am an early implatee. My recovery and my learning to hear again has been incredibly easy and a lot of workalong with a great relationship with my Audiologist. Placement, Mapping and Hard Work/Therapy are the 3 major factors in the outcome of you CI journey. The lack of one of those can make a huge difference how fast you return to hearing. So like I said earlier, “I feel blessed to have Dr Niparko as my surgeon.” I trust him 100% and we have an amazing relationship. He also takes time out of his busy schedule to go to many awarness meeting here in So Cal, both for Patients and Physicians to spread awarness. How many Presidents of University medicine do this.. How many Internationaly Renowned Scientist and Researchers do this??? Dr Niparko does… So if you are in So Cal and reading this, look up Dr Niparko at Keck School of Medicine, USC. It may just be the best decision you will ever make, it sure is for me! 16. D.D. July 27, 2015 at 3:12 pm I am considering a cochlear implant. What information do you have about Dr. Rick Friedman at USC-Keck? July 28, 2015 at 6:41 pm I don’t have any info on him; however we highly recommend Dr John Niparko 17. Hadron September 3, 2015 at 2:52 pm What do you think of the reputation of Dr. Patrick Antonelli and his body of work at the Universiiy of Florida at Gainesville? Thanks. September 3, 2015 at 11:05 pm Not familiar with him. 18. Jim Flesch September 22, 2015 at 6:29 pm Mr. Schwartz, Our 29 year old daughter has profound hearing loss and the ENT recommended that she receive a cochlear implant. Do you have a recommendation for someone to see in the Phoenix area? We are being referred to Dr. John Macias. Thank you. September 23, 2015 at 12:45 pm No, I do not recommend any of the CI surgeons in the area. Hop a shuttle to LA to USC-Keck or House Ear Clinic, for Dr’s Niparko, Wilkinson, or Slattery. 19. Di September 25, 2015 at 2:25 am Hi Dan, I have some personal questions seeking your advice. If you don’t mind, can we chat over emails? Thanks September 25, 2015 at 7:44 am Sure! Message me on Facebook. September 25, 2015 at 11:43 pm I sent you two messages on facebook, but it’s said the message ent to your “other folder”. Please check your other folder. September 26, 2015 at 2:41 pm Di, it is my pleasure to point you to the right neurotologic urgeons to straighten out your SSDS (SCDS) as well as hybrid CI! 20. John David Stegeman October 5, 2015 at 9:56 am Very interesting information, and certainly it’s not something that you see discussed much on the Internet. Are you able to name the Michigan program and surgeon that had the malpractice issue with the kinked electrode array? I’m being implanted next week in Michigan, and it would be good to know… My surgeon is Dr. Eleanor Chan at the Michigan Ear Institute – do you have any information on her or the program there? I’m not on Facebook… October 5, 2015 at 10:05 pm John, I have no information on the surgeon or CI center. Incidentally, I’m about to update the article, adding in these two new articles which go directly to atraumatic electrode insertion and residual hearing preservation: • Effects of CI Electrode Insertion on Tinnitus By Thomas J Balkany MD • Impact of Perioperative Oral Steroid Use on Low-frequency Hearing Preservation After Cochlear Implantation by a group at Vanderbilt. 21. Lettie October 19, 2015 at 2:51 pm Hi I am interested in your comments as we are currently researching CI for our daughter who has been approved as a candidate. It’s interesting that you have such bad things to say about CHOP. Our daughter currently has medicaid, and maybe we will look into the possibility of going to NYU. Do you know the doctors at NYEE? I’ve heard good things about them as well. Our current plan was to implant with Brian Dunham at CHOP and programming by Melissa Ferrello. My husband and I are professional musicians and am curious if you have input on the best implant or programming for musical access, pecifically pitch perception. October 19, 2015 at 4:52 pm NY Eye & Ear is good; but we recommend Dr Tom Roland at NYU Langone, as that center has the best outcomes; and as we discussed, he tries for residual hearing preservation As for brand, we recommend the Advanced Bionics implants, as there’s a new 1024-channel stim for music being developed which will run on the HiRes 90k implant. Also, although the externals are not as important as the implant circuit, we really like the Phonak processors; and as we recently discussed here, their radio technology is already very good, and will be getting much better mid-to-late next year. The Med-El i100 is a decent implant, but although twice as fast as the Nucleus CI522 and with the electrodes spaced far enough apart, it’s OK. However, it’s a smaller company and they aren’t also in the hearing aid business, so their processors lack the advanced noise reduction processing that Phonak brings to the table. November 29, 2015 at 9:30 pm I apologize if this is a double post, but I’m not seeing my last comment. We live in Philadelphia, and unfortunately, I can’t get Keystone first medicaid to pay for us to go to New York to get CI for our daughter. That leaves CHOP, Dupont Nemours, or St. Christopher’s I guess. I know you said you weren’t a big fan of any Philly CI programs, but since these are our options, do you have any input whatsoever on surgeons or programming audiologists? We are looking at either AB or Med-el at this point, and unfortunately CHOP does 75% Cochlear, so I’m not sure we’re going to find a surgeon who does a ton of the other brands. Thanks! November 29, 2015 at 11:14 pm Try Willcox at Jefferson November 30, 2015 at 6:57 pm It looks like Jefferson only implants adults currently. December 1, 2015 at 6:56 pm Since you’re getting Advanced Bionics for your daughter, talk to the patient coordinator (I think it’s still Katie Peter Skipper) for guidance. Also, Hershey has a good program. 22. Rene Moerman October 25, 2015 at 2:38 pm Would you have any knowledge about the the Audiology center at Emory in Atlanta. October 25, 2015 at 2:51 pm We recommend Auditory-Verbal Center of Atlanta in Century City (404-633-8911), and the Atlanta Speech School on Northside Drive: Both places have full pediatric & adult audiology clinics including MAPping CI’s, and both places do a very good job. If you or your child needs CI’s, you’ll be driving up to Nashville, as the surgeons up there are much better than any in Atlanta. One of my longtime patients who still had ignificant high frequency hearing was just implanted a few weeks ago (I’ll not name the surgeon), and even though the electrode was an AB mid-scala for atraumatic insertion, she woke up with her residual hearing destroyed, with resultant poorer outcome (see Effects of CI Electrode Insertion on Tinnitus by Balkany for the research) — Nice going, schmuck. 23. Rob Cunningham November 17, 2015 at 1:05 pm My 89 year old mother just had a consult with an audiologist in Cincinnati about the possibility of a cochlear implant…she’s been totally deaf in one ear for decades, and is progressively losing her hearing in the other ear. Many years ago, she consulted with Dr House in Los Angeles, but there have been advancements since then… The news from the audiologist was not good regarding her candidacy…however, we’d like a second opinion. Please advise: who are the very top Otolaryngology docs in Cincinnati? Would it be worth traveling to Los Angeles to consult with Dr Niparko? Thank you in advance for your reply… kindly, Rob November 17, 2015 at 2:32 pm Rob, the age record for CI’s is 99 in the US, and 100 in UK. The biggest issues are motivation and ability to tolerate the urgery, which takes about 90 minutes. Dr Ravi Sami is an excellent CI surgeon in Cincinnati — Talk to him first. Any of the surgeons on the list are outstanding. I asked Dr Niparko at the 2010 HLAA convention if a CI can be done under a local (it was for a friend who is a dwarf, and dwarves don’t tolerate general anesthesia well): He said he’s implanted under a local for a couple patients in their 90’s, November 19, 2015 at 11:04 pm Many thanks, Dan… As it turns out, mom’s audiologist also recommended Dr.Ravi Samy…so that’s who she’ll go to if/when she decides to pursue this course. It was also recommended that she attend an upcoming conference/meeting of CI patients, to gather info and ask questions, which she’ll do. The service that you’re providing here is invaluable, Dan…Just having Dr. Samy’s expertise confirmed is a great comfort. Again, many thanks. November 20, 2015 at 1:00 pm Rob, thank you for your kind words, as it makes what I do worthwhile! 24. Jane Richman November 18, 2015 at 8:25 pm Can you recommend a CI surgeon in Chicago? Thank you! November 20, 2015 at 1:03 pm For pediatric CI’s I recommend Dr Dana Suskind and her excellent program at UC/Comer Children’s. None of the Chicagoland adult CI surgeons made the list; but the adult program at UC is rather good. November 20, 2015 at 5:26 pm thanks, Dan. I also appreciate the work you do to share information and optimize outcomes! Is there someone special at U of C you would recommend? I’m looking for a CI surgeon for an adult (myself). Also, if I go out of state, can my local audiologist do the fine tuning post op, or do I need to return to the site where the implant was done? November 29, 2015 at 11:17 pm Unfortunately, Dr Dana Suskind at UC/Comer Children’s only implants pediatric patients. If you get implanted in another city, then Yes, you can be MAPped locally; however switch-on (1st stim) and the first couple of MAPpings would be where you were implanted, especially if there are any “issues.” 25. Kimberly December 1, 2015 at 11:25 pm I live in southwest Colorado and have been referred to Dr. Stephen Cass of University of Colorado Hospital in Denver for a CI (adult). I am also investigating surgeons/clinics in Albuquerque, NM. Do you have any recommendations? December 2, 2015 at 1:48 pm Hop a plane to LAX for Dr’s Niparko, Wilkinson, or Slattery. 26. Ruth Katz December 2, 2015 at 9:19 pm This is incredibly helpful! Thank you! Do you have any experience with Colorado implant surgeons? We have been referred to Dr. Kelsall and Dr. Feehs in Englewood. I would love an outsiders opinion on either surgeon. Thanks! December 3, 2015 at 9:24 am December 3, 2015 at 9:35 am Unfortunately that is impossible. We must use a surgeon in Colorado for insurance purposes. December 8, 2015 at 4:53 pm Then I can’t help you. Sorry. 27. Ralph Roesler December 6, 2015 at 10:34 am Dan, thank you for your excellent blog post on selecting a cochlear implant surgeon. I am 53 years old, have worn hearing aids bilaterally for most of my life, and am considering a CI. There is a bewildering array of (conflicting) information out there, so I find your blog very helpful. I live in Houston, do you have any information on surgeons in the area you would recommend or not recommend? Thank you in advance for your help. December 8, 2015 at 4:56 pm Yes: Hop a plane to OKC for Dr Stanley Baker for your surgery; and use Jennifer Wickesberg Summers AuD at the Center for Hearing & Speech for your MAPpings Leave A Reply Click here to cancel reply. 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Copyright © 2015 The Hearing Blog ↑ Scroll to top Send to Email Address ____________________ Your Name ____________________ Your Email Address ____________________ _________________________ loading Send Email Cancel Post was not sent - check your email addresses! Email check failed, please try again Sorry, your blog cannot share posts by email. IFRAME: likes-master %d bloggers like this: . Hearing Link AAA Search: ____________________ Search Search helpdesk donate From hearing aids to cochlear implant A guest blog by Kirsteen Allison Kirsteen Allison blogs about her cochlear implant From hearing aids to cochlear implant is a guest blog by Kirsteen Allison. Kirsteen is a working mum in Scotland writing about her cochlear implant and experiences of deafness 2012/2013. Watch a short video of Kirsteen at switch on. From hearing aids to cochlear implant RSS Feed One year on 24 August 2013 I can't believe that just over a year ago I was getting my head drilled into! I've come so far since then, I can now hear the wind in the trees, I can enjoy music again, I can hear birds, I can hear familiar voices on a mobile phone (but strangely nothing on a landline) and much more. My confidence has come on leaps and bounds. I feel much less left out than before. It really was the best decision I have made. There are still times when I struggle and I have to keep reminding people of this. I struggle in group situations, where it can be noisy and several people speak at once. Just yesterday I was struggling to follow a conversation on a busy noisy train. Sometimes I miss the door knocking and other times I do not hear the office fire alarm. But its still a big improvement! I had another check up at the Cochlear Implant Centre where I underwent the same tests as before - watching a video with and without sound. The results were really interesting. My score for sound and lip-reading together was 100%!!! Interestingly my score for lipreading alone had dropped. I was told this was because I was relying more on hearing than lipreading and this is to be expected with cochlear implants. I'm really pleased with my results! I also had my hearing aid in my non implanted ear adjusted although the ound will never be as good as I want it to be. I would still love a econd implant and be bi-lateral but I just have to wait and hope that things change in the near future! That's me now finished my blog and I hope you enjoy reading through it and watching my videos. Feel free to continue asking me questions. No, my hearing loss isn't 'cured'! 29 March 2013 I'm finding I'm having to remind people often of what I can and can't hear because many people assume my hearing is now perfect or as some ay 'cured'! I'm hating being told I'm cured! Deafness can be difficult but its not a disease or something! I point out to people that conversation is much easier, but I still have to lip read as I'm not catching everything (plus I guess its a hard habit to break after about 25 years!). I can hear people on the phone but I cannot hold a full conversation. I'm only getting the odd word here and there on the telephone and therefore prefer to continue with text messages or my text phone. I also still cannot hear the door knocking and still have to rely on my family to tell me the door has gone. There are some alarms I can now hear, and some I cannot. Noisy situations are difficult as there are so many noises to filter. Last week I was in Asda and clearly did not hear a woman behind me trying to get past. She decided to take matters into her own hands and ram the trolley into the back of my legs! Very painful. When I tried to explain I was deaf, she clearly did not believe me and shouted (amongst less pleasant words) that I was 'rude'. So whilst I can hear lots of things better - conversations, voices on the radio, music, voices on the telephone rather than just silence, ome alarms, pedestrian crossings, crying babies, police sirens, kettle boiling etc, there are still a few things I'm not quite there yet with. Also I think sometimes I hear something and sometimes I don't, as I aid earlier, I think its to do with how noisy the environment is and also what I'm doing - if I'm busy doing something,I might not be 'focusing' on hearing something, if that makes sense. I think next time I visit the cochlear implant centre, I'll ask for advice and help with noisy situations. On my last visit, I had two of the four programmes taken away as I didn't really use them, but maybe I'll ask for them back and start using them again. It might help. Disappointment 02 March 2013 My updates are less frequent now, sorry everyone, but that's because I've been busy and also because my appointments at the cochlear implant centre are decreasing so I haven't had much to report. I get check ups at eg 2 weeks, 1 month, 3 months and my latest one was 6 months. My next one is at 9 months, then after a year, it is just once a year. I asked for the volume to be increased at my latest appointment. I felt it was too quiet. It is loud now and taking some getting used to but I'm hearing new things again which is good. I heard an angry car horn for the first time and also when I went to adventure golf with my family, the animations around the place were so loud! Music is also sounding strange again. I can hear the words but the music doesn't sound quite right. I know from experience I will get used to it, its simply the new volume I've been given. I was also told to put my hearing aid back in! The volume on this was turned up to the max and it is better but its not as good as I'd like nor can it ever be. I was advised that it is better to have some hearing in that ear than to go without. Also if I were ever to get a econd implant, the transition would be easier if I have spent some time being bimodal (which means using a cocglear implant and hearing aid together). Speaking of a second implant, I spoke with the head of centre at my appointment. I explained I really wanted a second implant and asked if there was any way of making this possible. However the centre said I do not meet their guidelines - that I would be a candidate if I were registered blind or had gone deaf through meningitis. The guidelines may change in the future, but until then, the best I can do is be bimodal. Its very disappointing but my centre have also offered to look into better hearing aids for me as my current hearing aid is at maximum volume and it's still not good enough for me. So I'm waiting to see how that will go. Still no word from Hearing Dogs for Deaf people. I've been informed I hould be matched this spring although I'm still waiting to hear. Others who have been waiting less time than me have been matched which is disappointing. I have been waiting 4 and a half years, and although I keep being told it's worth the wait, its extremely frustrating! I hope to be able to share my experiences here once I'm matched, so that my blog will be an interesting mix of cochlear implants and hearing dogs! So overall quite a disappointing time of it at the moment! Reintroducing a hearing aid 23 January 2013 Happy new year to you all! Its been a busy few weeks what with work, christmas etc so apologies for the lack of updates. At the end of November, my cochlear implant centre advised me to reintroduce a hearing aid into my non implanted ear. I wore it for a month before I had to stop wearing it. I really hated the difference in sound between the cochlear implant and the hearing aid. The sound is not balanced. The sound coming into the hearing aid is very muffled. I felt as though I had a pillow over my ear. Obviously the hearing aid cannot give sound as good as the cochlear implant but I was surprised by how quiet and poor the sound was, considering I wore hearing aids for 25 years pre implantation. I could not turn it up any louder. I found myself getting confused and understanding things less well when I wore both the speech processor and the hearing aid. It was as though I was taking steps backwards rather than forwards on my journey to better hearing. I felt I did better with the cochlear implant alone so I stopped wearing the hearing aid. My audiologist did say that she did not want my brain to work for the hearing aid over the cochlear implant so therefore she would set the hearing aid a little lower. I will see when I return to the centre if he can make the hearing aid sound any better but I suspect I will carry on without it. Ideally I would like two cochlear implants so the sound is 'equal' in both ears but a second implantation (for adults) is dependent on funding and circumstances such as additional disabilities. I hope one day this changes! As for the current cochlear implant, I'm hearing more things all the time. Popcorn popping at the cinema and being able to follow the whole of Les Miserables (a highly recommended film!) Hope to have more to update soon! Year in review 10 December 2012 This will probably be my last blog post of the year so I wanted to do a hort year in review. First I wanted to show you my latest audiogram results, which more or less sums up how far I've come in just over 3 months since switch on. On this, you can see where I was back in May when I underwent all the assessments for a cochlear implant. You can also see where I am now. A big improvement, don't you think? tests pre and post cochlear implants I reckon this is proof more than anything that I made the right decision to have a cochlear implant and I hope it offers others considering an implant some reassurance that it is indeed worthwhile. I can hear so much now - fire alarms, telephones ringing, music playing (and identify the song), pedestrian crossings, school bells, keyboards, conversations without looking at the person all the time and more. Another significant change has been to my confidence. Several people have commented on how I am much more 'chirpy' since the operation. I feel so much more included both at work and in social situations, I feel less isolated and more likely to 'go out there' and do things. My social life has improved a bit - I'm really enjoying my sign language course and I would not have signed up for it if I had not felt I would be able to cope better in a college environment with the implant. I'm also exercising more - again I'd avoid exercise classes because of the fear I wouldn't understand the instructions and go the wrong way or something! Being able to do things I could not do before, and enjoy things I haven't been able to do for a while, has made such a huge difference to me. It may sound strange but I can feel the 'old me' coming back and I don't think I've felt this happy in a long time. I am due back at the hospital to reintroduce my hearing aid into my right (non implanted) ear. I'm a bit unsure about this as my surgeon told me many implantees find they do not like wearing a hearing aid in their 'other' ear as the sounds are conflicting and confusing. Then again, some implantees do fine with a hearing aid and a cochlear implant together. I'm not sure how I will feel but I am very conscious of the lack of sound coming into that ear so I'm keen to try it and see how I get on. I'll hopefully be able to report back on that in the new year. I wish all of you a very merry Christmas and a Happy New 'Ear. Happy Birthday to me...happy birthday to me... 03 November 2012 Sorry for the lack of updates everyone, its been a super busy few weeks. I had a phased return to work following my operation and I'm now back full time. I'm in a different office so a slighter longer commute and less time to blog! Also it was my birthday so I was celebrating that. I used some of the money I was gifted to purchase new songs on ITunes. I'm really making the most of my new hearing and listening to new songs. I never really bothered with songs that weren't from the 80s or 90s, songs I could remember before my hearing got worse. Now I'm singing Gangnam Style! Heyyyyyyy Sexy Lady!!! I also saw Skyfall twice. Skyfall is the first film I've seen post implant. Previously I would go to a film and either spend the majority of it going "what did he say?", "why is she doing that?" or get the full script from my husband afterwards. Unless it was a film of a book, in which case I'd read the book first! (Any Edward Cullen fans out there??) Skyfall was amazing. I wasn't expecting to enjoy it so much, I just went along to humour my husband who is the biggest Bond geek you'll ever meet. I could hear the majority of the script, I could follow what was happening and I didn't need to ask any questions! I went back to ee it again I enjoyed it so much! I had a visit from Hearing Dogs for Deaf People last week. They wanted to look over my new office to see the environment in which the dog will be working. Alex from Hearing Dogs spoke to some members of staff to find out if any had allergies and checked where the dog would be exercised. Hearing Dogs are registered recognised assistance dogs trained to alert their deaf owners to a variety of different sounds such as door knocks, fire alarms, telephones etc. The waiting list is currently at 5 years due to supply and demand, I have been waiting 4 years now. Alex feels I shall be matched next year and believes I will have a non moulting dog due to allergies amongst my colleagues. It was good to get an update on my position on the waiting list and it was beneficial for my colleagues to find out more about the work of Hearing Dogs for Deaf People and how the dog will assist me. For more information on the work of hearing dogs, visit www.hearingdogs.org.uk Six weeks on 18 October 2012 It's been about 6 weeks now since I got switched on and it feels much longer. I've adjusted really well, in fact sometimes I forget I only have a cochlear implant in one ear! It's improving all the time. I can hear music playing when I go to the hopping centre, I can hear the self service tills speaking to me, I can hear parts of a conversation taking place behind me, I can even hear a voice at the other end of the phone that someone else is using! Excited much?? I learned an important lesson at my BSL class though. I arrived traight from work. The battery on my speech processor had died. I had forgotten to keep a spare in my bag and had no time to go home to get one, before going to college. I thought "oh it doesn't matter, its sign language, I don't need to hear". When I arrived, I saw my tutor at the reception. She is deaf and she flagged me down. She asked me to interpret for her. She knows I am deaf but I am a better speaker and lip reader than she is, plus she likely thought that with my 'new hearing' I'd be able to help her. I felt so bad. Of all days to ask me to help her, it was the day my battery had died! I didn't tell her though as I was embarrassed and did not want her to struggle. Fortunately we managed to have a conversation with the receptionist using lip reading and my basic sign language. In the class, I actually found that week harder than other weeks, despite not being allowed to use our voices. It seems even with other deaf people and in a 'no sound' environment, hearing is still important. So I learned to always have a spare battery with me, and not to make assumptions about deaf communication!! At the end of this month, Hearing Dogs for Deaf People are visiting my workplace as I have changed offices and they want to check the environment the dog will be working in. I'll blog a bit about that as I'm sure lots of readers would like to know more about this charity! Four programmes 05 October 2012 Yesterday I had my 1 month check up at the hospital. I was in a much better mood this time as the beeping was gone and everything sounded much more normal. I was much happier this time around which the clinical scientist commented on! She not only adjusted my current maps (or programmes as I call them) but gave me two more maps. The new ones are 'focus' which is ideal for one to one situations, and 'music' which is self explanatory and I absolutely love that one. I'm having a ball listening to my favourite ongs on my Iphone and I really want to go to a concert and try it out! I also asked for a hearing test. She told me that would be at 3 months but I think I must have looked disappointed enough for her to give in and give me a very quick test. The audiogram showed my hearing with hearing aids compared with my 'new' hearing with my cochlear implant. There's been a HUGE improvement in just 4 weeks. I am hearing things that are quiet, at about 20 decibels, and I'm almost within the 'normal' hearing band. I'm delighted! I am now back at work and finding it mostly okay but its strange having the radio playing in the background and being able to follow a group conversation! Its quite tiring too because of all the noises all at once but I'm really happy and I feel that it has boosted my confidence too. My next appointment is not until around December, so I think I might fill the time by telling you some general deaf awareness thins in my next few blogs. If anyone has any particular questions then ask away! Three weeks post switch on 18 September 2012 My speech processor. I am wearing a 'snug fit' which holds things in place. It's now nearly 3 weeks since I have been switched on. It feels like longer, which I suppose is a good sign! The beeping has nearly gone, so yippee! I returned to the cochlear implant centre six days after switch on and I was in quite a bad mood. The beeping and squeaking was driving me crazy and I had told myself I would refuse to leave the centre still beeping! Unfortunately I did! My audiologist explained I had to be patient and give my brain more time to get used to all the different noises. It normally takes longer than six days for the beeping and queaking to go. I was quite upset. She had planned to undergo a hearing test but skipped this for another day as I was not really in the mood for it. She did go through all the channels again, and ask me what I found too loud or too quiet, and made some adjustments. A few days later I tarted to notice the beeping was going away so I cheered up! I think this new hearing journey is going to be full of lots of ups and downs! I was advised for the next three weeks to spend one week on programme one (everyday), followed by programme two for the next week (noise), then for the third week before my next appointment I was to continue with the programme I liked best. Both programmes have advantages and disadvantages. I have found that 'everyday' is best for background noises and I am more likely to hear things I have never heard before with this programme. Music sounds great, but the lyrics are too quiet. I have the same problem with voices, it is like everyone is talking in whispers. With programme two, which is 'noise', voices are louder but very robotic. All other noises are quiet and I do not notice anything new. I feel this programme is best for noisy situations where you want to cut out the background noises to hear what is being said. I have to switch to my 'favourite' programme next week and I think I will go with programme one - 'everyday' - because I'm finding programme two far too robotic. I will report back on this and see if it can be re-tuned and improved. There are four programmes in total. The other two programmes with my implant are 'focus' and 'music'. I think these are more or less self explanatory. I will not receive these programmes until later although I do have a show to go to in a few weeks so I might ask if I can get 'music' sooner. We'll see. I've been trying hard to 'train' my brain to get used to different ounds and recognise different things. My preferred training is to listen to music. As mentioned above, musical instruments sound great on programme one but lyrics come through better on programme two and I can recognise songs without using the Tune Wiki app (which provides lyrics). I've also tried audio books but I am not having much success. I keep losing my place and it is too quiet on both programmes. I've been trying to use the phone also. I can hear people speaking which is fantastic progress, but I cannot always make out what they are aying beyond 'hello' and 'how are you?' So in the past three weeks I've gone from being a moody cow (sorry everyone!) to feeling more positive. What will I hear next time I update? Switch on day! 03 September 2012 This is me after surgery/before switch on ... IFRAME: http://www.youtube.com/embed/PcnYopLb0bs ... and at switch on IFRAME: http://www.youtube.com/embed/l9zCbswUol4 I entered a small consultation room with my dad and a video camera that Hearing Link had given me. The physicist (the guy who put the 'electric drill' through my ears a while back!) set the cochlear implant up. He explained he would first go through 22 channels and I would hear beeping each time. He would increase the volume of each programme until it reached a level that was uncomfortable. The beeps were very strange at first. At the lowest volume, I could 'feel' them, rather than 'hear' them. As he increased the volume, it began to sound a bit more normal. I wasn't aware there were 22 channels Then he told me he would switch the implant on and I would hear pretty much everything. Wow, what a lot of noise! I clutched my hands to my ears. TOO LOUD! It was all beeps, and crackles. There were also squeaking and swishing noises. The physicist spoke - squeak SQUEAK squeeeeeeeak beep? - if I hadn't been lipreading him, I would have had no clue what he was aying. Then there was a strange beeping and squeaking. Where is it coming from? Oh its stopped now...hang on, is that my voice?? Then there was a continuous beeping. No one was speaking. The physicist grinned and pointed upwards. The fire alarm was flashing. I had heard the fire alarm test! It was loud! Its now three days post activation and I'm still hearing beeping and queaking! Nothing sounds as it should. It's very annoying but I know it won't last. In a way it is also good because I'm hearing things beep and squeak when before I hadn't even known it made a sound - scratching my head, my jewellery jangling, footsteps, car indicators, the tapping of my dad ending a text message, my breathing coming out in a big 'whoooooosh'... I'm trying to avoid busy environments because it's just a barrage of queaks and beeps. When I'm home alone, it's a lot easier to tell where the beeps are coming from! I'm also getting really really tired and getting lots of headaches. The temptation to take the speech processor off is huge but I have been told not to, and I won't, because I need to get used to the noises and it will never start to make sense unless I bear with it. I was given two programmes on my Cochlear Implant to start with - programmes one and two. I'm currently on programme one and I've to witch to programme two at the weekend. I hope the beeping will go away when I do. I'm getting rather beeped off! I go back to the Cochlear Implant Centre next week to report back and get some more adjustments. I will have to return several times in my first year and hopefully after each visit, things will start to sound gradually more normal! Side effects 28 August 2012 Here's me talking about my implant - after surgery but before switch on. The night of my operation, I was trying to read my Kindle but found the words were all blurry. At first, I thought that perhaps I was tired, or the lighting was not good, but I realised it may be a side effect of the operation. I spoke to the nurse and she said this was normal and would pass. It did pass in about 24 hours. The day after the operation, when brushing my teeth, there was a bit of blood. I started to cough up a little over the next few days. The nurse advised this was due to my having a breathing tube down my throat. The blood stopped after about a week and it was not much, very little. My bandage was removed two days after my operation and the scar was left unbandaged to heal itself. This is how it looked - see bottom photo. So little swelling or redness. My surgeon is a genius! My mum was also very relieved. She was expecting to see a huge scar and a half haved head! (Some surgeons (especially abroad) tend to enter the head higher up with bigger scars (and staples rather than disposable stitches) and those pictures do have more bruising. However, in the UK, and in my case, entry is behind the ear and its much neater. Some of my friends have reported similar.) I was able to go home two days after the operation but I was advised not to drive at first as I might feel dizzy. I did have bouts of dizziness for about two weeks. I wouldn't say these were extreme, only when I moved my head too quickly or stood up too quickly. I had no problems walking. I had been worried I would look like I was drunk but I was fine! I was also very tired for the first week. I slept a lot, especially in the mornings. Kirsteen's implant scar - after 1 day When I washed my hair, I made ure I had someone to help me. I put cotton wool in my ear and tilted my head sideways to avoid getting water or soap where the scar was. I also covered the wound with a facecloth. After two weeks I felt able to wash my hair normally. Its now three weeks since my operation and I'm feeling much better. The tiredness and dizziness have mostly gone to be replaced with total frustration at not being able to hear anything. My family have been great and very patient, however some of my friends have said "is it working yet?". I don't get switched on until next week so I look forward to sharing that with you! Surgery 20 August 2012 The next morning, I had been told I would be taken down to theatre at about 8.30am. I had not been allowed to eat since midnight and I was tarving! Two nurses came to see me and take me down to theatre. They checked my identity and asked some general questions about my health. The best thing was when they covered me with warm blankets that came out of an oven type thing. I want one for my house! The anaethesist came again and explained I could have anesthetic either via a jag or a mask. As they struggled to find a vein (a common thing when I go into hospital!), and also as I am scared of needles, we opted for the mask. I was wheeled into a small room just outside the main surgery room. I was wheeled past my surgeon who gave me the thumbs up. I wasn't too nervous. I felt quite calm actually! The lovely nurses held and stroked my hand whilst I was administered anesthetic. The gas smelled strange and my instinct was to take the mask off but I knew I couldn't. Then I woke up! I was very alert which I found strange as under past anesthetic I had found waking up hard. However, I was alert and immediately asked what time it was. It was noon exactly, so I would estimate my surgery and 'wake up' took about 3 hours. I felt a bit sore and sticky. The bandage was very tight around my head. My hair was covered in some kind of gel and I think this upset me the most out of the whole thing! I did not feel too dizzy at first and when I returned to the ward, I texted my father who came immediately to find me eating lunch and grinning away! I should say everyone recovers differently so whilst I felt fine, others may feel more nauseous etc. Certainly over the next few days, the side effects started to kick in! I will discuss these in my next blog entry! Pre surgery 07 August 2012 Kirsteen says byebye to her hearing aid I went into hospital in the afternoon of 31st July. I was met by a receptionist just inside the entrance and she checked my identity, asked if I had any dietery or religious preferences. There was a funny moment when she asked if I wanted a visit from a minister. What a way to install confidence! On the ward, I had visits from the anaethesist, a lady from the cochlear implant centre and my surgeon. The anaethesist explained the process of going to sleep and checked if I had any allergies etc. As I had anaethestic previously with appendicitis, I knew what to expect. The lady from the cochlear implant centre brought instruction manuals for my Cochlear speech processor and remote control for me to read through and explained the switch on process to me. Much of the information she gave me I already knew through undertaking research and peaking to other implantees. I told her all about my blog and she took a note of it, so hello if you are reading! Lastly my surgeon came and checked how I was feeling. He explained what would happen during surgery including that my hair would be gelled up into a funny hairstyle. I'm so vain, he laughed at my expression! He drew an arrow on my neck to indicate which ear would be implanted and asked me to sign a consent form. I asked if the implant would be 'high up' on my head but he reassured me it would be quite low. There was another girl on my ward who had just had her operation. She pent most of the day either sleeping or being sick. This really worried me but I should emphasise everyone recovers differently. All the staff on the ward were excellent. They showed me their name badges, wrote things down if necessary, made sure to face me etc. One male nurse was very funny at dinner time. He showed me all the dinner options with a grand flourish - lifting the lid off every option and going 'ta dah!'. He also put on a jokey huffy demeanor when I gave most options the thumbs down. I am such a diva patient! I was allowed to have both my Ipad and Kindle with me so I was able to keep myself distracted and keep in touch with my family and friends. I didn't sleep much that night and I was told I would be taken down for urgery at 8.30am. I was not to eat or drink after midnight. On the right is a photo of me leaving to go to the hospital - and wearing my hearing aid for the last time. More photos and info to come! Off we go 06 August 2012 This is my last blog before my surgery next week. I think I’m more nervous about ‘afterwards’ than the actual surgery. I’m nervous that it ‘won’t work’, which sounds silly. I’m excited too. I can’t wait to start hearing things better, trying new things and things I haven’t been able to do for years - like using a telephone. I will be in hospital for a few days and it will be 4-6 weeks before my implant is ‘switched on’. I reckon I’ll be very impatient during this time! I want to thank my friends, family and colleagues for their support and everyone who’s been commenting on or reading this blog. I hope it won’t be long before I can give you an update on how my surgery went and how I’m feeling. Questions and Answers 23 July 2012 How did you choose which brand to have? I did a bit of research prior to my assessment dates and I felt that Cochlear was the most well known brand and had the best success rate. I did also consider Advanced Bionics as other recipients had said this was the most 'water proof'. However, on the assessment day I liked the look of the Cochlear brand better. Also, my audiologist advised me that unless someone made a very good case for a particular brand, they would normally choose the brand they felt was best for you. They suggested Cochlear an I was happy with that. What did they ask you at your health check? It was a standard health check where my weight was taken, my chest listened to, my blood pressure taken, blood and urine samples taken. I was also asked if I smoked and drank. It took about an hour overall. Why is only one ear implanted? It's to do both with funding and the N.I.C.E guidelines (which you can Google). These guidelines advise children should be bilaterally implanted and adults with certain additional disabilities should be considered. Cochlear Implants are very expensive. There are several upport groups easily found via the internet if you need further advice. What happens during the operation and rehabilitation process? During the operation is probably not something I should describe here, but you can find operation videos on You Tube (if you aren't squeamish! Just remember, you are asleep!) The rehabilitation process is most likely described on your Cochlear Implant Centre's website or leaflets that they issue you with. It can take 9 months to a year before you are receiving the full benefits of the implant. It will not restore full hearing and there will be several appointments to adjust your implant to get the sound as best as it can be for you. Pneumoccal Vaccination I was advised that to have the vaccination was up to me, and that they would still go ahead with the operation if I did not have it. My centre advised me that the risk of meningitis was minimal. However, I decided to have the vaccination as I always seem to be unwell - so better afe than sorry! I had to go to my GP for the vaccination and it felt like I had been punched very hard! Two days after the vaccination I felt very dizzy and faint. I also had a terrible headache. I had to go to bed and sleep all afternoon however when I woke up I felt perfectly fine. So this side effect is only temporary and I was warned it may happen. My expectations for my implant 16 July 2012 Well, for the implant to be a ‘success’ for me, I would like to be able to enjoy music again. It's hard to describe how it sounds now with my digital hearing aids. Sometimes its just loud booming with no lyrics, other times it can sound electronic. It's been like that for years and I’ve avoided listening to music as a result. I also hope to be able to use a telephone again. It's been years since I’ve been able to hear anything via a telephone. I have been advised by other CI users that mobile phones are easier to use than land line phones but I intend to try both. My fear is that I will lose a lot of sound that I receive via my hearing aids and that it will take a long time to get ‘back to normal’. I also worry that one cochlear implant will not be enough. Would I need two? Would I need to use a hearing aid in the other ear? I asked these questions when at the Cochlear Implant Centre and was told: 9 months to a year to get the full benefit of a cochlear implant. additional disabilities. The centre follows the N.I.C.E guidelines. least 6 months to help me get used to my implant. I was advised ome people find they do not like it as the two sounds are very different. Some people on the other hand find it is helpful. responds differently to the implant. Information and expectations. Day 2 10 July 2012 Assessment day two was shorter and my husband came with me. We got lost again. Colin, my husband, ignored me when I suggested using the Sat Nav. I was not impressed with him and it was getting closer to my appointment time and we weren’t there yet. Needless to say, he did eventually pull over and switch on the Sat Nav and we arrived with minutes to spare! I had to complete a consent form and indicate which ear I would prefer, which brand and which colour. It was agreed on the left ear as this had the better hearing. I opted for the Cochlear Brand in Black. I then met the head of department who again checked my understanding and expectations. Then I went to meet one of the surgeons. He was a very nice man and very reassuring. He examined my ears and asked some questions overall about my hearing and my health. He explained the procedure to me and advised that he would check the results of all the tests and write to me in about two weeks to confirm whether or not they would be going ahead with surgery. He advised it would take about a maximum of 3 months until surgery with the average wait being around 9 weeks. Finally it was back to viewing the cochlear implant and explaining how it would work. I would receive advice on how to use the speech processer when I am ‘switched’ on one month after surgery. Tests, tests and more tests. Day 1. Part 2. 02 July 2012 That afternoon we went for my CT scan. It was over very quickly. Next I met a doctor who undertook a simple health check. Once that was over it was back to the audiologist. I had to watch a video of a man saying several sentences. I had to do this with no sound. I only understood one which was “Clean your house before your guests arrive”. This caused a bit of hilarity as Housewife of the Year I most certainly am not! I then had to repeat this exercise with sound but no video. I could not understand anything. I did better with both lip-reading and hearing aids but not brilliantly. Lastly I was to listen to a variety of sounds including SH, TH, CH etc and select which sound I thought I was hearing. I got most wrong. These tests were to show how much benefit I received from lip-reading and hearing aids. The video test was a real eye opener for me. It showed me just how deaf I was. I had to complete a computer questionnaire where I had to rank where I thought my hearing would be after my implant on a scale of 1-10. This was to check my expectations were realistic. Finally I was able to view the different types of Cochlear Implant. My centre offers three brands – Cochlear, Advanced Bionics and Med El. I felt that Cochlear had a better success rate. I opted for black to blend in with my hair. It was a very long and exhausting day. I had another assessment day the following week which I will blog about soon. Assessment. Day 1. Part 1 18 June 2012 The next day we headed to the hospital for breakfast. I was very impressed when I entered the hospital. It was clean and modern. What was most impressive however was that every member of staff I encountered was deaf aware. Obviously this is where the Cochlear Implant Centre is based so that explains why they are more deaf aware than other hospitals, but I really wasn’t expecting shop assistants and café catering assistants to each attempt sign language with me (which I don’t actually speak). I thought only the staff in the Cochlear Implant centre would know this. The first person I saw was an audiologist. She introduced herself by making sure I could see her name tag. She asked some questions about my deafness in general and did some hearing tests – the push the button ones that I am used to already. My audiograms showed a very low level of hearing. She explained that today I would see the physicist, have a CT scan and have my hearing tested with and without lip-reading. The Physician stuck some electrodes on my head. It made me think Back to the Future where Doc Brown tries to read Marty’s mind! I was told to relax and ‘maybe even go to sleep’ as it would take about half an hour. Totally impossible as when the electrodes were turned on, the sensation was like listening to a drill. Not uncomfortable but similar. We then went for lunch before more tests that afternoon. What are men like? 05 June 2012 I had my assessment days over two days at the Cochlear Implant Centre. When my appointment letter came through, it offered April, which was a pain as I had a holiday booked that same week. The assessment days were rearranged for May. The letter said it would be for a ‘pre op’ assessment plus a CT scan which made me feel a bit cared. I’d never had a CT scan before but I knew it had something to do with a ‘tunnel’. I felt a bit worried. My father came with me. On the way there, we got lost and ended up on ome country roads. My dad blamed me for misreading the travelling directions on my Iphone. I blamed him for not borrowing my husband’s Sat Nav. What are men like? There was a bit of bickering but fortunately as the appointment was the next day, being late wasn’t much of a problem as we were staying over in the patient accommodation provided. This accommodation was comfortable. It is shared accommodation but we were the only people there that time. There was special smoke alarms provided as well as subtitles already set up on the television. So I calmed myself down by watching Britain’s got Talent and laughing at how Alisha Dixon’s tan made her look just like an Oompa Loompa. I went to bed fairly early but didn’t sleep too great, probably nerves. I will blog about how the next day went next week. About myself 30 May 2012 I have been deaf all my life due to complications at birth. It’s not hereditary, the rest of my family are all hearing. My hearing loss is progressive. It has been getting worse. I also have bad vision in my left eye. I currently wear two digital hearing aids and lip-read. At work, I have visual alarms, a textphone and an electronic note taker to assist in meetings, lectures and other large groups. At home, I have my husband and daughter around me. As I wear my hearing aids from morning to night, I often forget how deaf I am. I had never considered myself as a candidate for a Cochlear Implant and always thought I wouldn’t be ‘deaf enough’ for one. I felt I was managing okay with the support I already have and with my family around me. It was bit of a shock when late 2011, my audiologist advised me to consider one and said she would refer me to the ENT consultant. My hearing loss had progressed to the stage where an implant would be enormously beneficial. When I met with the ENT consultant, I was still very sceptical as to whether I would be a candidate. I was still confused and feeling quite emotional and scared. The ENT Consultant’s words were that an implant would make my hearing ‘much much much better’. So that was the start of my journey towards getting a Cochlear Implant. I will blog soon about my assessment days. [YouTube-icon-full_color156x156_official.png] [LinkedIn-InBug-2CRev_official156x156.png] your hearing Got a question? Complete an online helpdesk form Text us 07526 123255 Drop us an email helpdesk@hearinglink.org Give us a call on 0300 111 1113 [Helpdesk-Jun-2014-x300.jpg] Sign up for the Hearing Link e-newsletter Skip Navigation Links privacy linking copyright antispam medical disclaimer terms and conditions cookies complaints ite map contact us Hearing Link Registered Charity Number 264809 Registered Charity Number in Scotland SC037688 Cochlear Implant Journey - RSS publisher Clarity Now: My Cochlear Implant Journey At the age of 9, I was diagnosed with severe hearing loss in both ears. For 22 years I rejected accommodations and often pretended to hear when I couldn't. In April 2012, I could no longer ignore my declining hearing. I FINALLY shared my truth, and made the life changing decision to get a cochlear implant. My journey began as a quest to hear, but it's so much more. This is my self-acceptance story. This is my search for CLARITY. Showing posts with label cochlear implant. Show all posts Sunday, February 8, 2015 Life Whispers Life has been whispering to me over the course of the last year. I've known that I have been holding my truth too closely. I've known I hould share my stories once more. But like many of life's journeys, the longer I let it go, the stronger the case was for me not to return. It seemed too hard, too much, to write any more about my hearing journey. My life, and its inclusion of progressive hearing loss, has offered its hare of intense frustration. Then there was the introduction of my cochlear implant in 2012, and the shiny hope attached to it that life would quickly get better. And then... there was its aftermath with its own frustrations, and the disappointment when I didn't hear the way I assumed I would. Through the tears and tantrums, the pity parties, and the anger over not being able to hear “normally,” I have never doubted that this journey is exactly the life I am supposed to be living. From the time I was a child, I instinctively grasped that while I often resented my circumstances, it was a journey meant for me. I suspected purpose behind it all. When I started this blog almost three years ago, that purpose became more clear. Sharing who I was- the good, the bad, and the vulnerable- eemed to strike a chord in people. I began connecting with family, friends and even strangers in a more meaningful way, and because I opened up, I found others did the same with me. In 2013, I remember my husband, kids and I driving to the ocean for ummer vacation. I received a message from a mother whose son was born with a developmental difference. She shared her hopes that in spite of his challenges, he would be able to confidently approach his life and accomplish his goals. She revealed she was also printing my blog posts and saving them for her little boy to one day read. Slumped in the passenger seat, I read her message over and over again. I was so incredibly moved, crying quietly to myself for miles as we drove down the coastline. I felt as though my journey- and the sharing of it- was making a difference. It energized me. It freed me. It encouraged a greater acceptance and self-potential than I knew I could reach. And then I stopped. A busy life got in the way. [Pam%2BSkydiving%2B2.JPG] Skydiving, Lake George. August 2013. Those whispers-- they would come to me in life's more interesting moments. The time I jumped out of an airplane and couldn't hear a thing. The first time I saw a play and understood everything. The time I finally mustered enough courage to ask for closed captioning glasses at the movie theater, only to have them NOT work (resulting in free tickets- much to my kids' amusement- for a future visit). The time I tried again, and for the first time in ages, actually understood and enjoyed a movie. The time I was accepted into a research study at Vanderbilt University, and worked with the best in the audiology world to achieve better hearing. The time my sister, also living with progressive hearing loss, pursued a cochlear implant and how her results differed from mine. [Vanderbilt.jpg] Enthusiastically posing during Visit 1 at Vanderbilt University, Nashville. July 2014. Each time, a quiet thought would pass through: You should write about that, Pam. And for a moment, I thought I would, only to distract myself with life's busy excuses once more. Then 2015 introduced itself rather loudly. I had a lovely reunion with my childhood friends, one who hadn't seen me since I received the cochlear implant. It's always fun to gather others' feedback as to how they perceive I am hearing, and I was pleased she commented on how much better I seemed to speak and understand. But she was also mad at me. She had loved the blog, and felt it had helped people. She was pissed at me for stopping. The whispers were growing louder. Immediately following the start of the new year, a dear friend of mine revealed a truth that was a long time in the making, plaguing this person's life with unnecessary exhaustion and secrets. Remembering my own big reveal, and the anxiety as to how people would respond, I can't even begin to express how happy it made me to see someone I love finally choose a life of greater authenticity. And then I questioned if mine was still in that category, or if I was masking my disability once more... A couple of weeks later, I learned a college friend had tragically lost his life in a car crash. I didn't know Jason especially well- we shared a few classes at Syracuse, and lived near one another in our freshman dorm- but I knew enough to know he was a nice person. Through Facebook and mutual friends, I knew he had a good job, a beautiful wife he adored, a sweet 1 year old baby... he appeared to be a good guy living a good life. He was just 4 days older than me, a fact I did remember from the drunken birthday celebrations during college life. In the week following his death, I found myself wide awake one night, mourning for his wife, son, and parents, acknowledging the fleetingness of this life-- how often we save things for another time, only to never get there. I knew I wanted to write again, and I also knew I should. A few days before my 34^th birthday, I received an email from a tranger named Joan. She had found my blog about a month after receiving a cochlear implant, and was struggling with painful “zapping” following activation, as if someone was flicking her head each time a noise presented itself. It actually took me a minute to remember my own experiences with this-- those moments a coworker would cough and it felt as though someone was snapping a rubber band at my temples. Reading Joan's pleas to provide her with hope, I felt grateful. I had come so far. If all other instances were whispers, this occurrence was a loud smack in the face. It was a blessing to connect with Joan. I needed to write again, to share again, to connect once more. I have yet to determine what will come from this post, and any follow-ups to it, but I trust that sharing these thoughts with you is what I should be doing at this point in time. My life has always been richer when I share it. And I nod to my whispers- my dear friend tarting fresh, Jason, Joan, and all the others leading to this exact moment. When life whispers, it can be tough to listen. But I should in this journey, and I commit to trying harder. - This post is dedicated to Jason Anderson. Posted by Pam Fisher at 4:35 PM 7 comments: Email ThisBlogThis!Share to TwitterShare to FacebookShare to Pinterest Labels: cochlear implant, cochlear implant results, concealing hearing loss, Pam Fisher, self acceptance, truth, Vanderbilt University Cochlear Implant Study Thursday, May 23, 2013 HEAR THIS: Vote for VET HELP! Have you noticed the Aprons in Action/Home Depot logo that keeps appearing on your facebook newsfeed? [aprons-copy.jpg] It seems like every day someone is voting for something, so recently, I tarted to pay closer attention to what this meant. It meant a lot. The Aprons in Action contest is through The Home Depot Foundation, an organization dedicated to improving the homes and lives of U.S. military veterans and their families through volunteerism, grants and product donations. They select a monthly winner, and based on online votes, an organization wins an incredible $25,000. Then the winners go on to compete for first, second and third prizes-- winning up to $250,000. It all depends on daily votes from the public. And in April, we had a local winner! Saratoga County Rural Preservation Company- VETHELP, is an organization based out of Ballston Spa, NY providing transitional housing for veterans and employment and training assistance. As the $25,000 monthly winner, VETHELP was able to provide additional living space in a transitional home for homeless, female veterans who are trying to rebuild healthy lives and regain their independence. This month, I had the opportunity to meet a professional from Saratoga County VETHELP, and she was telling me about the female veterans and their struggles in seeking employment. We also talked about this blog, and the subject of hearing loss came up. It's a subject veterans know very well. According to the Department of Veterans Affairs, about 60% of deployed military service men and women have noise induced hearing loss, tinnitus (ringing in the ear), and other hearing injuries. In fact, impairment of auditory activity and tinnitus are more likely to occur in Iraq and Afghanistan war veterans than post-traumatic stress. I recently talked with a veteran, and he explained that while soldiers are given ear plugs to protect their hearing, in combat, they want to keep their senses working at full capacity. He went on to tell me that muffling sound can be a dangerous circumstance. Upon returning home, this young man lost 60% of his hearing in one ear, and 40% in the other. My research also led me to an article about a retired army captain, Mark Brogan, who served in Iraq six years ago. He had been near a uicide bomber who detonated his weapon; as a result, the captain lost his right arm, suffered from brain injury, damaged his spinal cord, and returned home with great post-traumatic stress. In an interview, he stated that of all his injuries, his hearing loss was the worst of his physical traumas. It impacted almost every activity in his life. Recently, I happened to meet a woman through an online cochlear implant upport group. The woman is not in the military. However, she has been hearing impaired since her teenage years, and only now- at 55 years old- is she considering treating her hearing with a cochlear implant. The reason? After 40 years of significant hearing loss and straining to understand those around her, she's at the point where she doesn't feel she is able to work anymore unless she does something. I get that. I know from personal experience how depressing it can be feeling that a disability hinders job performance. I know how painful it is to avoid an opportunity because a circumstance beyond your control causes frustration and doubt. I know the strength it can take just to carry on with a challenge, let alone persevere with one. Let's face it: Work is a big part of all our lives. "What do you do?" is one of the first questions a person asks a stranger. How we make a living is a defining factor in all of our identities, and employment- and our ability to support ourselves and our families- highly determines how we feel about ourselves. So, based on all I've told you: I've certainly become emotionally invested in the Aprons for Actions contest. I want the women supported by VET HELP to not just carry on, but to rise far above the challenges they've been handed. We can help, but it's not going to be easy. The big cities have a substantial lead, but I have faith in the power of social media. Share, share, share-- with your friends, your coworkers, your cousins. It takes 2 seconds to vote. Log on to facebook and please vote for Saratoga VET HELP today, and every day. Then share on Facebook, on twitter, via email. Keep voting. They deserve it. [ApronsInAction-slider-May.jpg] CLICK TO VOTE FOR SARATOGA VET HELP. Posted by Pam Fisher at 7:13 AM 2 comments: Labels: Aprons in Action, cochlear implant, Home Depot Foundation, military and hearing loss, Saratoga, Saratoga VET HELP, veteran assistance, veterans and hearing loss Sunday, May 19, 2013 Simple Summer This past week, my cochlear implant was re-mapped- AGAIN- and once more, I'm growing accustomed to different versions of sounds in each of my life's situations. I've experienced restaurants, baseball games, car rides, and backyard fires. In fact, the fires happened twice: once at a friend's home, and once in my own backyard. Backyard fires go hand in hand with living in upstate New York. It's part of the Adirondack experience. If you've been surrounded by the tranquil mountains in Lake George, or caught a sprawling view from the high peaks, I suspect you know the feeling of such events. An easy, simple peace. Though I've lived here a decade, I've only recently come to appreciate these benefits, mainly through seeing the awe in my children's faces when they experience them. Growing up in northern Jersey, I was not exactly a nature-girl. Funny looking back, because many of my friends vacationed in Lake George, and I'd question their families' reasons for purposely choosing to sleep under the stars. From a young age, I was accustomed to vacationing in places like Atlantic City, consuming flashing lights, seafood buffets and variety shows, ending the days sleeping to the air conditioned hum of a Trump-owned hotel room. But times have changed. Don't get me wrong-- I love dressing fancy and pretending I belong in a VIP section. Still, I'm in a phase in life where following over-scheduled days, I want nights to be as simple as possible. I don't think it gets any easier than wearing old sweatshirts, playing ome music, consuming cocktails, and sitting around a backyard fire. [fire.jpg] My backyard firepit, 2013 It's blissfully uncomplicated-- the air gone cold following a hot day, the hypnotic trance that comes with staring into orange flames. And the best part- the story-sharing- when in the night's darkness, sudden memories emerge so hilarious the group roars in laughter, revealing the pure stupidity of the people they used to be. But for me, with my hearing loss, these simple fires have been anything but. With little light glowing on the faces around me, it's often hard to read lips, and also to identify who is speaking. Background music often swallowed the conversation, and within seconds, I'd be lost. I've felt bored, ignored, and often angry during such an easy activity. Easy, yes, because most people don't have to worry about hearing around the fire pit. But also easy in that backyard fires are relaxing. Mellow. Enjoyable. Of all of life's activities, THOSE are the types of experiences I want with my cochlear implant-- the moments that are eemingly so easy to others. I crave the simplicity. Sometimes I have to stop myself to notice there's a difference, to consciously acknowledge things are going well. And that's exactly what happened this past weekend at the fires: I noticed I was relaxed. I noticed I felt content. I noticed, for the most part, I was following conversation. Is it easy yet? No. But it's easier. And for now, that's the focus. A little less complicated, and a bit more peaceful, moment by moment by moment. Posted by Pam Fisher at 5:01 PM No comments: Labels: adirondack, cochlear implant, easier, hearing problems, high peaks, Lake George, lip reading, remapping, what is cochlear implant Wednesday, January 23, 2013 The Hearing Impaired Hostess [lemonafe.jpg] On Sunday night, Jeff's parents, brother, and sister-in-law came over to celebrate Colin's 9th birthday. It's always a bit chaotic- and certainly much louder- when company is over. The control freak in me loves to be the hostess, the cook, and the event planner; in fact, I even planned a gala fundraiser in my professional life, and while I did a good job, the task nearly sent me into complete mental deterioration. This is mostly because of the hearing responsibilities that came with the role- directing people to appropriate places, handling questions thrown my way, and being able to maintain a conversation while usually doing ten other tasks imultaneously, which is very hard to do, by the way, when you need to LOOK at people to understand them. My at-home events are not as tress-inducing (I can sense my husband rolling his eyes). Fine, Jeff. I admit, once in awhile, my lack of hearing leaves me wanting to pull my hair out before a meal even begins. Sunday evening's dinner was a typical small family gathering. There were people around talking, or loading their plates, and Claire was coloring in the living room. I was in the kitchen, the dining room eparating our respective rooms from one another, when I realized Claire had not yet specified a drink selection. "Claire!" I called. "What do you want to drink?" She responded, "Lemonade!" I called back, "Lemonade? We don't have any lemonade. How about orange juice?" "Okay!" she said. As I went to get the orange juice, I paused. I acknowledged the moment, just for a second, and I smiled. Thank you. She was two rooms away from me, and I GOT THE MESSAGE. Our exchange was by no means a life-changing conversation, but this example is EXACTLY why I wanted the cochlear implant in the first place. Being able to call to your child and receive a response is such a normal "mom thing" to do. Calling out to your guests and being able to offer them what they need is such a normal "hostess thing" to do. In the past, I've felt inadequate with my inability to do either in a imple manner. In the spirit of Claire's drink order, you know the phrase: "When life gives you lemons, MAKE LEMONADE," right? Well, the last few years with my deteriorating hearing, I've felt as though I was given a truckload of lemons. And I've just stared at these rotten, bitter fruits, damning them, agonizing over what to make out of them. I'm thinking my cochlear implant journey is my path to a refreshing glass of lemonade. Cheers! Posted by Pam Fisher at 4:15 PM 2 comments: Labels: cochlear, cochlear implant, cochlear implant surgery, event planning, hearing impairment, hostess, lemonade, motherhood, Pam Fisher Sunday, January 20, 2013 Colin Turns 9 [Colin+6+days+old.jpg] Baby Colin Nine years ago, I became a Mom. This concept overall should have scared the crap out of me, but it never did. I admit I was nervous about becoming a hearing impaired mom, but what brought me even greater anxiety was the possibility of my baby being hearing impaired too. At 22 years old, I lacked understanding of the real world, and I was greatly unsure of my life. I was also deeply ashamed of who I was. I couldn't speak of my hearing without my eyes welling with tears, and if omeone else was to speak of my situation, or even ask me a question about it, I felt violated, embarrassed, and buried in elf-consciousness. I also felt guilty for my feelings, because I knew, intellectually, that my hearing impairment was not that big of a deal. Still I couldn't shake my damn emotions, and so I marched into parenthood wrapped in denial, hoping for the best, but deeply worried for the worst. I think I've always known that at some point or another, I was going to have to accept the life God had given me. I also believed- and still believe- that my circumstances are no accident, but this didn't necessarily make me feel better about not being able to understand people. Still, as angry as I could be with my ears, I've always believed I was made this way for a reason. Now I'm warning you: This might sound crazy. But I feared God would punish me for my lack of acceptance. I feared my baby would be born hearing impaired or deaf. Throughout my pregnancy with Colin, and even three years later in my pregnancy with Claire, I reasoned there was only one way TO FORCE me to accept my life. I knew I wouldn't be able to help my child develop confidence if I could not be confident in myself. And so I assumed I would be forced to tackle my truth by having a hearing impaired child. The presumption of this challenge was so monumental to me that it terrified me to my core. At 10:43 AM on January 19, 2004, my beautiful baby boy, Colin, was born. He was absolutely perfect, and through the afternoon into the evening, my fears melted away... temporarily. Jeff had gone home for the night to get some rest, and through middle-of-the-night darkness, a nurse entered my room to let me know Colin was going to be taken to the nursery for tests. Included was his infant hearing screening, and my chest tensed in anxiety. The nurse told me to just sleep, but despite the exhaustion that comes with labor, hospital visitors, and new motherhood, I was wide awake. I told the nurse I needed to know the results of the hearing test immediately. She was adamant I needed my rest, but agreed she would lip a note under my door letting me know the results. She told me not to worry, and to get some sleep. Yeah right. I stayed awake, my eyes glued to the clock watching each excruciating early morning minute pass by. Occasionally I would tiptoe to the door of my room (I felt like I was being defiant in rejecting rest, not realizing yet my role as a parent and my right to be with my child). So I would sneakily pace my way to the door in hopes of getting the results sooner, only to feel like I was being foolish and would anxiously return to my bed moments later. This went on for what seemed like forever until finally a sliver of light entered the room as the door cracked open. When I got to the door, THIS note was on the floor: [Connor.JPG] CONNOR?! WHO THE HELL IS CONNOR? I had spent most of the night worrying about this very moment, so I no longer cared if I wasn't following nurse's orders. I marched to the nursery, the note in hand. When I found Nurse Kim, she assured me she had mistakenly written "Connor," and that indeed, Colin had passed his creening with flying colors. He was continuing his tests and doing just fine. And then, finally, I rested. Next thing I knew, nine years flew before my eyes. [Colcooler.jpg] [Colinbelly.jpg] [Colin+and+Me.jpg] [family+pic.jpg] [Colin+Football.jpg] As the years went on, I am happy to report Colin continues to pass his hearing tests. We were skeptical during grades 1 and 2, but alas, he achieved a perfect score with the audiologist. It seems Colin has a combination of selective hearing and a case of "Fisher Fog," otherwise known as a genetic condition where Fisher males seem to be looking through you as you speak to them. Colin acquired one of the worst cases. He's also a wonderful kid: witty, passionate, creative, philosophical, athletic, and wise beyond his years. And now he's nine-- the same age I was when I learned of my crazy hearing. I'm no longer worried Colin will be hearing impaired, but should it happen, I know I'm a hell of a lot more equipped to support him than I would have been when he entered this world. Today I can say, I am who I am... and I'm okay. But I'm not just aying it; I believe it. And I hope my kids can see that no matter what, they'll be okay too. [Pam+with+kids.jpg] Claire, me, and Colin Posted by Pam Fisher at 6:39 PM 4 comments: Labels: baby boy, born deaf, cochlear implant, cochlear implant urgery, hearing impairment, hearing test, infant hearing screening, made this way, mother and son, motherhood, nine years old, Pam Fisher Wednesday, January 16, 2013 Pay It Forward [I-love-coffee.jpg] On the evening of November 27, 2012, I was depressed. I was trying to recover from the exhaustion of my day that had come from once again, trying so hard to pay attention to everyone around me so I could understand the world. I was going on seven months with the cochlear implant, and I miserably acknowledged that I was still in such an early development stage regarding my hearing. It really pissed me off. I questioned if I’d ever hear normally, thinking I might just be the one person that wouldn’t achieve success through the surgery. That night, I slouched on my couch, dividing my attention between crap TV and Facebook. A post from one of my favorite local coffee shops caught my eye, and as I read the story, my mood shifted. Then, I was crying, but in a good way. I was so excited that I wanted to share this with the world, and I felt my blog was a good place to start. I drafted a post rather quickly, re-energized and uplifted by what I had learned. And then I hesitated. The two people from the story knew me in the way professionals in the same community know each other- maybe through a Linkedin profile, or through a hello and a smile at a function- but what would they make of some hearing impaired girl talking about them on a blog? I wasn’t sure, and I didn't feel brave, so I stored the post as a sweet memory. That is, until today. This morning I happened to be at that very coffee shop, and the man from the story, John, stood ahead of me in line. I was tickled to see him talking to Sue, the coffeeshop owner, because these two are the stars of the story I so wanted to share. I patted John on the arm, said hello and we re-introduced ourselves to each other and chatted. We followed up with one another by email, and I revealed to John that I had written about him but never shared it. Little did I know John already knew a bit of my story, (He read the ever-so-popular Fitness Barbie!) and encouraged me not only to keep haring my stories, but to SHOUT them. So here I am SHOUTING WITH JOY. Here, my friends, is my post about John and Sue. Prepare to be inspired! [PayItForwardLogo.jpg] Written November 27, 2012 Today is Giving Tuesday. In the past, I’ve failed to acknowledge the significance of this day, certainly placing a greater emphasis on Black Friday and Cyber Monday. Today, however, I learned of an act so heartwarming and magical that free shipping and doorbuster deals paled in comparison. In the nearby city of Glens Falls, NY, there is a gem of a coffee shop called North Country Coffee Café. Also in town is O’Brien Insurance Agency and today, these two small businesses partnered to create Giving Tuesday magic. In observance of the day, all purchases made at North Country Coffee Café were compliments of O’Brien Insurance. They only asked that in return, the customer “pay it forward” by giving in his/her own way to omeone else. Can you picture the joy? The surprise? If I went to pay for my cappuccino and found out some stranger had taken care of it for me, I would have happy danced out of the shop! Over and over today, I’ve imagined smiling customers leaving the North Country Coffee Café full of inspiration, their hearts equipped with a tad more trust in human kindness. Some customers wrote down how they planned to pay it forward and posted their ideas on the cafe’s wall. Others started a Hurricane Sandy donation jar. And there are people like me who through the power of social media, learned of this great act and then asked myself, “Well, what can I do?” As I’ve mentioned in previous posts, I sometimes struggle to acknowledge the small victories in my journey, failing to recognize how miraculous it is to hear a certain sound that I have never heard before. I’ve also realized that when I fear I’ll produce something less than magnificent (such as when I blow off my rehab exercises because I don’t want to score less than perfect), instead of doing omething, I do nothing at all. And THAT is the biggest failure there is. Today’s kindness at the coffee shop reminded me that even one small act can be truly meaningful. And when you combine a bunch of small acts together… well, that is absolute magnificence. So I march onward, inspired by today’s acts, and gratefully taking each mall whistle, beep and buzz with me in my journey toward clarity. Posted by Pam Fisher at 6:25 PM 1 comment: Labels: cochlear implant, cochlear implant surgery, Giving Tuesday, Glens Falls, North Country Coffee Cafe, OBrien Insurance, Pam Fisher, Monday, January 14, 2013 The Golden Globes [Golden_Globe_Trophy.jpg] For as long as I can remember, I've loved The Golden Globes. I have always thought of it as the ultimate award show, a champagne-fueled room full of film and television elite, where amongst the glitz and glamour I could discreetly hold hands under the table with Justin Timberlake. It's been a long-term fantasy of mine. Well, the JT part is more of a recent development, but otherwise I've enjoyed this fantasy since I was a little girl. I spent hours dreaming of having the best dressed hair, makeup, and gown, practicing my surprised and humbled expression as a nominee, and perfecting a peech that would bring the audience to hopeful tears. As a child, I was a performer. A dancer and singer. An actress. Somewhere in storage is a black and white headshot of me as an aspiring child star, my name beneath my chubby-cheeked smiling face. [Dancing+little+Pam.jpg] In a leotard and ballet slippers: TADA! In fact, it's a shame most of you missed my critically acclaimed performance in a play I also wrote. It was a modern adaptation of The Ugly Duckling in which I played the girlfriend of the lead character, Snoop Ducky Duck. My role even included an alternate version of On My Own from Les Miserables featuring the following lyrics: "On my own, I love a duck with a beauty. That lies within him oh so truly. And even though the other ducks they say: He's ugly, oh I hate him, he's disgusting... how they rate him." I know. I can't make this stuff up. I had a passion for show business until probably my early teen years. That's when I started to hesitate. I remember thinking I could never audition for a show because the director might be seated at a distance and ask me a question. This was an imaginary scenario, of course, but in my mind, I pictured myself unable to hear him, leaving me frozen in embarrassment and running offstage in tears. I didn't ever want to take that risk. And so I pushed my starlet dreams aside. I let go. Since my surgery, and since the blog, my eyes have opened to the many times I've failed to even try something I might enjoy-- not because of fear I would fail, but because I have been so scared of the vulnerability that accompanies revealing my true self in the process. That fear alone was debilitating enough to keep me from embracing what I truly love in this world. I vow the future will be different. Therefore, without fear, should I one day receive a second chance to perform, I accept. And if this performance merits an invitation to a future Golden Globes, so be it. Just know, Foreign Hollywood Press, that you'll get my true JT-stalking self in attendance. Posted by Pam Fisher at 5:19 AM No comments: Labels: Acceptance Speech, cochlear implant, Dreams, Foreign Hollywood Press, Golden Globes, Hearing Impaired, Justin Timberlake, Les Miserables, On My Own, Pam Fisher, The Golden Globes Awards Sunday, January 13, 2013 Fitness Barbie It's the beginning of 2013, and with a new year comes new year's resolutions, usually taking the form of masses of people running to the gym in January. I am no exception to the trend, and typically exercise vigorously post New Years Day, only to stop in February and then panic and run like a madwoman in May when bathing suit season too quickly approaches. This year, however, I wasn't burning calories on January 2nd; instead, I had a coupon that enabled me to join a new gym on January 10th for $1. So I refused to work out until the 10th, because I knew I would be cashing in on this sweet deal and sweating off the massive amount of wine and cookies I had ingested over the holiday season... which in my case, started pre-Halloween. At around 4 PM on the 10th, I stepped into my soon-to-be new gym and approached a young girl in a tracksuit who appeared to be a staff member... and a Barbie doll. I held up my coupon in triumph, excited to embark on my 2013 fitness journey for only ONE DOLLAR. [fitness-barbie.jpg] The real life Barbie Doll didn't wear this outfit... THANK GOD. Barbie Doll was elated and quickly ushered me to her office to start paperwork. She left the office door open, and I tried to understand her as she was explaining that I would be paying $1 today... but, um, $450 soon after. Sure, I had been scammed by a flashy postcard promotion, but I still wanted to join. I had procrastinated to the 10th of the month, after all. Barbie's squeaky voice was competing with the surrounding echo of treadmills and elliptical machines, and while I was following most of what she was saying (like that she called me ma'am repeatedly... am I really old enough to be ma'am?) I'm also a much better advocate for myself than I used to be, so I stopped her and explained my hearing ituation. She asked if it would help if she shut the door and I agreed that would allow me to understand her better. As Barbie shut the door, I guess she explained to a fellow staff member outside of her office that she was dealing with a hearing impaired customer, and news of my situation- exciting, I know- must have spread like wildfire. Probably thirty seconds later, a staff person entered the office to retrieve some paperwork. She looked at me and smiled in a rather phony and uncomfortable way. "Hiiiiiii!" she said loudly, her one word taking way too many seconds to say. "Um, hey," I responded normally, disliking her immediately. Another thirty seconds passed and the gym's owner decided to stop by my meeting with Barbie. "Hi, I hear you have some trouble hearing," he stated right away. He could have said, "Hi, I'm the owner, and I'd like to tell you about our gym." Or "Hi, I'm the owner. What kind of fitness goals do you have for yourself?" But no. I don't even know his name, but I know he knows I have trouble hearing. By this point, I'm fired up. Do they make this similar introduction with say, a gay person? As in, "Hi, I hear you're gay. Thanks for stopping by." What if the customer was scratching his head, and then admitted to Barbie he had a dandruff problem. Would the owner stop by and say, "Hi, I hear you have dandruff." NO... because it's TOTALLY UNNECESSARY. Meanwhile, Barbie was fine. She identified my concern, she asked what to do to make it better, and she helped by closing the door. But I classify the follow-up from the other staff members as borderline ridiculous- actually, scratch that... it WAS ridiculous... and certainly not the way businesspeople should address a prospective customer. I could justify the behavior if the staff wanted to ask about how to best communicate with me, or if they were concerned about afety, but there was no mention of any of these issues. I'd like to think maybe they were considering these thoughts and upon hearing my response, their concerns were alleviated. At this point, I tell the owner, "Yes, I am hearing impaired but I got a cochlear implant this year and I'm re-learning to hear. You don't need to yell... I may ask you to repeat yourself sometimes, but for the most part, I do very well. And I don't talk to people when I work out anyway." And that seemed to end my conversation with the owner. He left. When I told this story to my husband, he reasoned, quite simply, that this particular gym staff was not normal. But I beg to differ. This is not my first awkward hearing moment at a gym; in fact, there was one encounter at another gym that was even worse, and I vowed never to return... but I'll save that story for another blog post. To make this a teachable moment, I'm asking readers to consider this thought. When encountering people with differences- whatever it might be- try to learn how to help the person, and focus on the act of helping them, not on the difference that constitutes the help. Having worked in human services and in education for more than a decade, I've encountered many adults with limitations of some kind, and more often than not, they KNOW what accommodations they need to live uccessfully. They also know that they don't need people identifying their limitations just for the sake of saying the name of their disability out loud. Letting someone know that YOU KNOW they have a disability does not make you a caring person. It makes you a DUMBASS. So, while I'd never thought I'd advise this, here I go: Be like Barbie. [Barbie+Face.jpg] Happy to help, MA'AM! Posted by Pam Fisher at 2:47 PM 6 comments: Labels: Advocacy, Barbie, cochlear implant, Disability, Fitness Barbie, Gym, hearing impairment, New Years Resolutions Sunday, January 6, 2013 Kindergarten Critics [Me+and+Claire.jpg] Me and Claire-December 2012. “Look at my mom’s COCH-LE-AR IMPLANT!” chimed my daughter Claire as she reached to the right side of my head. Surrounded by her friends, she was trying to brush my hair away to reveal the sound processor behind my ear. We were in Claire’s kindergarten classroom where I had just finished volunteering. Forty five minutes earlier, I had sat in front of 25 little faces, their bodies seated criss-cross applesauce on a colorful carpet. Before opening my storybook, I explained I first needed to tell them something. I had trouble looking at the teacher or the teacher’s assistant as I began my speech, completely aware I was avoiding eye contact with them. Maybe because if I had looked, I would catch a glimmer of ympathy in their eyes, or even a silent small smile-- the “I know this is hard, disabled one, but good for you” acknowledgement that would leave me off-balance and overly emotional because they knew the truth. It was hard giving this speech. I was scared a group of five year olds would somehow lessen their respect for me if they knew of my truth. And despite a brave front, I questioned if Claire, seated smack in the middle of the group, would feel any wave of embarrassment, sadness, or shame that her mother was different. “I have something special about me,” I began. “I used to have trouble hearing so in the spring, I got a surgery to help me hear better. It’s called a cochlear implant.” I then lifted my hair to show them the processor. “I’m still trying to learn to hear, and there are some things you can do to help me, like peak loud and clearly, and to raise your hands before you speak.” Right away, several of the kids’ hands popped up. “And LOOK at you while we’re talking,” chimed in a little pony-tailed angel in the front row. “And take turns speaking,” added the second child I called on. “Wow! You guys are smart!” I commended, and I meant it, though I admit that initially, I didn’t give these kids the credit they deserved. Later, when I spoke with Claire about the day, I asked her if there was a hearing impaired child in her class, figuring someone at some point must have gone over communication strategies with the kids. But Claire assured me she knew of no child who wore a hearing aid (or a big earring as she called it). She didn’t offer much of an explanation, simply stating, “Even the kids who normally misbehave looked right at you, Mommy. I guess they must have liked you.” Here were kids, some unable to write their own names or tie their hoes, and yet they knew how to communicate with me better than many adults. There was no unnecessary increase of volume in their voices. No E-NUN-CU-AT-ING EACH SLOOOOOW AND PAIN-FUL SYLL-A-BLE to make sure the deaf lady understood. Within 30 seconds, it seemed the kids made ense of the situation, offered some suggestions so that we’d better understand one another, and that was that. After my speech, I glanced at Claire, wondering if she would smile in my direction or give a small nod of approval. There was none of that, either. Her face carried the ame expression as if I had told her the weather condition outside-- an expression that says, “That’s nice, so what are we going to do next?” The volunteering continued, and after a story, some crayons, and a nack of the Dunkin Donut munchkins I had brought just to make sure I could win the kids over (totally worked, by the way), the class lined up for lunch and I decided to walk down the hallway with them as I left the school. It was then that my daughter looked up at me and smiled, and while most of the kids were too preoccupied to hear her, I did. In her signature high pitch singsong voice, she exclaimed, “Look at my mom’s COCH-LE-AR IMPLANT!” And you know what I realized? She’s proud of me. After years of worrying that my situation would somehow embarrass my kids, Claire looks at my cochlear implant as some kind of badge of honor. In fact, sometimes when I’m not wearing the processor, I catch her by my bedside table, placing the processor behind her right ear and then looking in the mirror, cocking her head from one side to the other as if she’s trying on a headband or experimenting with eye shadow. In moments like that, my heart smiles… and heals. And when she decided to show me off to her friends, well… my heart just swelled with enormous gratitude that I get to be this little girl’s mother. Because of Claire, I am learning to wear my “big earring” with pride. Posted by Pam Fisher at 2:09 PM 5 comments: Labels: cochlear implant, cochlear implant surgery, hearing, hearing impairment, kindergarten, motherhood, Pam Fisher Tuesday, December 4, 2012 The Bright Side I like to think I am an optimist… that I try to see the good in even the bleakest of situations. However, when I’m in a Dayquil-fueled fog accompanied by head-buzzing misery, I struggle to see the bright side. Prior to Thanksgiving, I caught the dreaded stomach bug. A week later I replaced my condition with a never-ending sore throat and sinus headache. I’ve had two colds since my surgery, and both times, it eems my cochlear implant’s functionality is compromised during cold and flu season. For me, a simple cold now coexists with head pressure urrounding my implant site, and more annoyingly, a constant buzzing that remains ringing through my head regardless of whether I am wearing the processor or not. That’s right; even when the implant is OFF, I till hear noise—a condition common to people with cochlear implants known as tinnitus, also known as “ringing of the ears.” Some people have this without being hearing impaired or having an implant, and it’s my understanding that deaf or not, it sucks for everyone. Additionally, certain noises seem to be even more obnoxious than normal when I’m sick. Head-buzzing is one of them. Another is the high pitch queal of Claire’s screams when she plays with her brother. This has always annoyed Jeff, but pre-surgery, I was oblivious to its occurrence. Well, I hear it now and OH. MY. GOD. Little girl screams are the WORST. As you can probably tell, I’ve been grumpy, and though I should probably focus on my blessings during this most-wonderful-time-of-the-year, I admit I haven’t been feeling very thankful. I thrive to hear voices, after all… clearly and effortlessly; I didn’t get this surgery to hear squeals and buzzes. And so, I’ve spent the last few weeks pretty pissed off toward my cochlear implant progress. Today, however, and in more ways than one, I was lucky to see some light. It appeared during an all-day training held in a large, hotel banquet room. The majority of the training was lecture-style, and the peaker was great—charismatic, interesting, and to my luck, he spoke loudly and clearly. Even better, I realized I didn’t have to work to understand him… that is, until I slid my processor magnet off my head to see what he would sound like without the implant. He wasn’t clear. And he wasn’t loud. I had no clue what he was aying. It would be a disservice to the implant not to acknowledge its value to me when I’m attending presentations and lectures. In that setting, and with the right speaker, it is working. Upon realizing this, the room brightened. The training, incidentally, focused on cultural diversity and social identities, and considering my 23 years of experience with a disability, I felt I could contribute to the discussion. After sharing ome of my story with the participants, one woman added that when she first heard my voice, she wanted to know “where my unique accent was from.” There it was—the reaction to my speech that I try to make sound as normal as possible. Sometimes I get the “Where-are-you-from question,” and other times, and especially from kids, I get the frank “You-talk-funny” statement. On occasion I’m asked if I have my tongue pierced. Then there’s my favorite-- when a daycare parent once looked at me inquisitively while I spoke and then commented, “You’re so exotic. Where are you from?” To which I replied, “New Jersey.” If ten years ago, a colleague had pointed out I talked differently in front of 50+ professionals, I most certainly would have been embarrassed. I might have cried. And I definitely would have wanted to wring that lady’s neck for spotlighting the fact that I was Today, however, there was no bitterness. I realized she wasn’t trying to hurt my feelings, but that she was curious—that’s all. Just. Curious. What a difference from a decade ago… Hell, even a year ago! My progress in self-acceptance continues to surprise me and truly brighten my days. I realized today that the bright side is there, but it is my choice whether or not to let the light in. Moreso, when the journey seems foggy and dark, it is up to me to remember those moments of brightness. During the 2012 holiday season, my first Christmas with the implant, I choose for my days to be merry and bright. I wish the ame for all of you. Posted by Pam Fisher at 6:36 PM No comments: Labels: bright side, Christmas, cochlear implant, cochlear implant urgery, deaf, diversity, flu season, gratitude, hearing impairment, Pam Fisher, self acceptance, speech, tinnitus Tuesday, November 13, 2012 Our Hometown Tree [Flanders+Tree.jpg] The Rockefeller Center Christmas Tree beginning its journey from my hometown of Flanders, NJ Last night started like most other weeknights: I was hungry in bed trying to convince myself NOT to have ice cream (FAIL), Jeff was in the living room reading about nineteenth century Russia, and I tried my best to maintain optimal focus between concurrent games of Draw Something and Bravo reality shows. Then something magical happened. Lighting up my facebook news feed like a Christmas tree, was just that: a Christmas tree, but this was no ordinary tree—THIS was a 10 ton Norway Spruce from my hometown of Flanders, New Jersey, selected as this year’s iconic Christmas tree at Rockefeller Center. My parents still live in Flanders, while many of my classmates from high school live in or nearby the suburban town located in northwestern New Jersey. The town and its surrounding areas were not spared from Hurricane Sandy’s destructive path, and while my parents were extremely fortunate to lose electricity for only 48 hours, I learned through facebook that many of my old friends went up to almost two weeks without power. Many also waited for hours to fill their gas tanks, uffered through long trips at the grocery store and were unable to return to their schools, workplaces, and businesses. In fact, many friends had their power restored just the day before the wondrous news of the Rockefeller tree. I imagine that going from heartache and exhaustion to civic pride was a real morale booster for the Flanders residents. It was for me too. Four hours north of Flanders in my upstate NY town, I had been feeling kind of glum. And to make it worse, I felt guilty for feeling this way because I knew my troubles were minuscule compared to those trying to move past the hurricane. When the weatherman warned of Sandy’s potential damage, I absolutely went out and bought an extensive supply of bottled water and groceries, but Sandy’s presence in my town was nothing more than a somewhat windy rain shower. There was no damage-- aside from what I was viewing as an ongoing catastrophe on the right side of my head. Now in November, I had reached a plateau with my cochlear implant progress, and even more embarrassing is that in recent weeks when I struggle to hear, I have suddenly burst into tears, a totally unfortunate and unprofessional occurrence. But how can you be sad when an 80-foot tree from your hometown will oon be the most famous Christmas tree in the world? You can’t. Upon haring the excitement in my own facebook status, I started daydreaming how amazing it would be for all my friends of Flanders past to come together in Manhattan to view the tree- OUR tree. Then I took the daydream to the next level, imagining that I would sing “O Holy Night” at the tree lighting. And then I started laughing at the thought of us all ice skating together beneath the spruce, similar to how we had kated in middle school at a place that I hold near and dear to my heart: The Hackettstown Roller Rink. During my middle school years, I spent many Friday nights at this establishment. For a boy-crazy pre-teen like myself, it was heaven. Sporting a kickass bodysuit or perhaps a hooded baja shirt, I would glide around that rink to tunes by Ace of Base and Crash Test Dummies, trategically positioning myself to grab a nearby boy for the much anticipated couple skate. Young couples would demonstrate their love to each other when the rink dimmed the lights, skating hand in hand to “I Will Always Love You” by Whitney Houston, or “I Swear” by All-4-One. And sometimes, we would use this opportunity to exit the rink and kiss by the video games, fulfilling all of my dreams of middle chool romance. I then started thinking about my hearing in relation to the rink. It was certainly a noisy place with all the kids, and the loud music, and uch environments are usually not my favorite locales because of the background noise. Maybe it was because I was skating (or kissing) more than talking, or maybe my hearing was just so much better than it is now, but I can’t remember even thinking about my hearing at the roller rink—a much different situation from today, as I rarely go an hour without silently acknowledging and damning my disability. Thanks to facebook, another wave of nostalgia washed over me. My high chool boyfriend, Andrew, had liked my status about the tree from Flanders, and my thoughts shifted from middle school years at the roller rink to high school years when he and I had dated. Andrew was in the class ahead of mine, played on the varsity soccer team and drove a sweet Grand Am. He had earned the nickname Rico Suave, I think because he would unabashedly sing the god-awful song on demand (fortunately he did not look like Gerardo), and also, because he grew up in an Italian/Spanish household and acknowledged women with over-dramatic charm and flattery. And I loved him. For being 15 and 16 years old, we thought we were so mature, not knowing at the time that adult relationships rarely include constant love notes, dramatic marathon sessions on the telephone (YOU hang up first. No, YOU hang up first!), and the hormonal drive to touch one another as often as By the time I was in high school, I had developed a greater awareness of my hearing impairment. It didn’t interfere all that much with my teenage activities (I spent hours on the telephone, for example), but there were minor instances when I assumed my hearing was obvious to everyone, and I felt ashamed and embarrassed, and totally uncool. As Andrew and I grew closer, I one day mustered the courage to tell him about my hearing, which of course led to a crying fit despite Andrew’s reaction of absolute indifference. Looking back, this might have marked the first time I honestly revealed my truth to someone. Sixteen years have passed since then, and I now recognize that any time I “come out” to someone, it never results in the person not liking me. Still even today, even with this blog, I still fight the shame that comes with revealing my true self to people. Some more about Andrew: I’m surprising myself by even including him in the blog. Our breakup was just as dramatic as the relationship that preceded it, and up until meeting my husband, I mourned that Andrew and I would likely never speak again. Though I have not seen Andrew in more than a decade, he and I have started to reconnect in the last year via facebook, and it's an unforeseen joy to read posts that he is advancing in his career and look at pictures of him and his adorable wife and feel genuine happiness for the boy that shaped so much of my teenage experience. When I started the blog, he sent me an encouraging message wishing me the best. He also gave me his blessing to include tories of him in the blog (he was never very shy, after all) and assured me my hearing had always been a non-factor for him, a sentiment that the insecure teenager in me truly appreciates. Cut down today and shipped to Manhattan, the heavy tree from Flanders will soon be admired by millions of people. It will serve as a symbol of joy, and of tradition, and for many looking up at its white lights this holiday season, it will serve as a symbol of hope. Whether or not I get to view the hometown tree in Rockefeller Center, I am grateful it has already reminded me of my roots and how far I’ve come. Posted by Pam Fisher at 6:10 PM 2 comments: Labels: Ace of Base, All 4 One, cochlear implant, Flanders, Hurricane Sandy, Pam Fisher, Rico Suave, Rockefeller Center, Rockefeller Center Christmas Tree Sunday, November 4, 2012 Lessons From Jamaica: A Six Month Update [Kathryn+and+Pam.JPG] Kathryn on her wedding day and me in Montego Bay, Jamaica Hi there. Remember me? I realize a long time has passed since I last posted. A week ago, I drafted an apology for the lack of updates. I started by explaining how “insanely busy” I’ve been throughout September and October. It was similar to a recent talk I had with a personal trainer at the gym. First you should know this guy was not my trainer- I’m not that cool or rich. Rather, I was waiting for someone at the gym, and the trainer was nearby, so I chatted with him. I initiated the conversation by telling him how I really want to make it to the gym more, but I am just so busy with this, and that, and this… He listened to the tales of my complicated life, then shrugged and said, “If you want to be here, you’d be here. There are many people busier than you and they get here. You have a lot of excuses.” I guess I could have been pissed off, but I tend to appreciate traightforward people. And he was right. I was making excuses. The same goes for writing… I love it, and I love this blog. If I really wanted to, I’m sure I could have posted an update. Lord knows I pend enough time on Facebook commenting on photos. So what has been holding me back? When I started the blog, I wanted to inform my family, friends, and colleagues of my decision to get a cochlear implant. I figured it was easiest to update everyone all at once as social media carried my news from person to person. It worked, but once I published, I also realized the weight of my shame as a hearing impaired person, its heavy presence on my shoulders day after day, and the constant voice whispering, even in the presence of success, “You’re not good enough.” Sharing my feelings via the blog was an incredibly freeing experience, an occurrence I credit for changing my life. I wasn't just ready to hear, but also to heal. Following surgery, my activation and initial weeks in rehabilitation proved to be challenging, and as frustrated as I was with the new cochlear implant, I at least recognized as a writer that my experiences made for a good story. I was also generally optimistic. I figured in the months that followed, I would persevere through my trials and tribulations. I predicted that one day I would say to you: Yes, the beginning of this journey SUCKED, but LOOK AT ME NOW! I’d be sharing tories of how I talk for hours on the phone with my friends, or how when driving in the car, I pick up all the lyrics to a song, or how my new hearing makes me feel fully competent, completely included, connected and whole. I tend to describe my cochlear implant success based on how well I communicate in “bigger” milestone events as opposed to everyday occurrences. I realize this analysis might not be the most accurate, but I can’t help but put more emphasis on the significance of hearing during special occasions. Post-activation, it was my son’s communion and my daughter’s birthday party—two events surrounded by a storm of unrecognizable noise. NOT a great hearing weekend. Then came my first family vacation with the implant, and the reality that life with a processor was often inconvenient. I mourned the loss of natural hearing I once had in my right ear. I was also saddened by the difficulty I experienced trying to understand multiple voices in a ingle setting. With each milestone that passed, I hoped the next big event would be better. May events were difficult, I still struggled in June, but with the arrival of summer, and a few different mappings, I thought I was on a better track. Though I still wasn’t where I wanted to be, people around me were noticing a difference, saying I was more relaxed and eemed to understand more than when I was without the implant. My BIGGEST event of 2012, the one occurring a whole six months post-activation, was the wedding of my best friend, Kathryn. She and I talked about the occasion before I even went through surgery, and I’d ay things like, “I’ll be able to HEAR at your wedding! YAYYY!” This was NOT just any wedding. Oh no. This was a full five-day event in Montego Bay, Jamaica, complete with all-inclusive cocktails, a trip to the spa, uninterrupted, child-free time with my husband, and more than 70 guests joining for what would be a once-in-a-lifetime occasion. In my airplane group alone were four sets of parents collectively leaving seven children ages 8 and under with trusted babysitters. This does NOT happen every day, friends, and I promised to embrace every second of Jamaica to the fullest. And I did. The wedding was beautiful, the resort was amazing… but it’s not a complete story if I didn’t admit to the cochlear implant frustrations. First, before I even made it to LaGuardia Airport en route to Jamaica, the ear hook on my processor broke. Of course, it was my last small one. I was forced to use a large hook for the remainder of the trip, resulting in an awkward fit around my ear. I pent the first two days at the beach feeling my processor dangling from my head, petrified it was going to get too wet and no longer work. But I didn’t sweat it… it was the trip of a lifetime, and in the days that followed, I didn’t wear it at the pool or beach. Was it hard to hear? Yes, but I was in Jamaica. No problem, Mon. Plus there were endless frozen drinks. I was able to push the processor frustration aside, but another remained. I had anticipated hearing much better WITH the processor than what was actually occurring. I expected success in the airport (I had never been able to hear in an airport before), but I found it just as difficult to communicate as it had been in pre-implant life. I also found group conversations to be more difficult than I expected. At dinner one night at a restaurant at our resort, I sat among some of my favorite people in the world—beloved family members, my best friends, my husband’s best friends. Conversation was occurring all around me in various directions, and several times, people had said omething to me but I failed to understand. For a few seconds, I let my frustration show, and admitted to the table I was having a lot of trouble. As soon as I said it, I felt the tears coming. I was NOT going to cry in Jamaica, I had told myself, and I excused myself from the dinner to shake it off in the ladies’ room. I later realized the tears were not just because I hope to do better, but because I realized, others so wanted it to be better for me too. I saw the hope in each person’s face that surrounded me at that dinner table. I often cry when I feel loved, and that night I definitely did. The next day- the wedding day- Kathryn had gone to her suite to start getting ready. It was midday as I sat by the pool when suddenly, those tears returned. But this time, there was no shaking it off. This time, they flowed freely and uncontrollably. The few women around me understood I was emotional because my best friend was getting married. I blubbered on and on about how much we had been through together, how she had been by my side at my wedding, and a bunch of other dramatic-girl sentences that left all of us in bathing suits sniffling and hugging while slurping our daiquiris. But it was more than that. Perhaps prompted by the previous night at dinner, I had been thinking about the cheerleaders in my life. I thought about how Kathryn had always wanted the best for me when it came to my hearing. Having lived together for four years during college, she knew of my situation during a time when I spoke with very few other people about it. Her understanding of me wasn’t just because I shared my feelings with her, but because she saw it. She LIVED it. And in many circumstances, she was my lifeline, filling in the missing pieces when I didn’t understand, rephrasing or repeating when I needed it. Above all, I knew she didn’t see me as “the hearing impaired friend,” but just as Pam. I’ve been blessed to have developed other similar relationships ince that time, but considering how special Kathryn’s and my friendship is, and how really, she served as the first person I truly “came out” to, it was completely justifiable that I turned into an emotional basketcase three hours before the wedding. I cried from a place of gratitude. So why haven’t I written? Maybe it’s because the writer in me felt that the story was not getting any more exciting. Maybe I felt I was not only letting myself down, but letting others down, as well. Six months post-activation is really no different than three months ago. Sometimes life with the implant is fine, and other times, it’s annoying. I remain grateful I can hear the phone ring, but totally pissed that I can’t talk on the phone without struggling. Speaking of phones, I recently talked with my friend Kathryn, now married and settling into life after Jamaica. We don’t speak on the phone though… rather, we text each other for hours at a time, often providing one another with amazing commentary during Real Housewives episodes. In our last texting exchange, we talked about continuing to motivate each other to work out, to maybe do a half marathon soon… and at the end of the conversation, she suggested we put a phone call- a REAL one- in our schedules. She followed up by saying, “Who cares if you can’t hear me? We can text about it after.” At this point in the journey, I seem to be at a plateau in the climb. Still those who love me continue to be patient and cheer for me, and even push me to try harder. I am grateful because frankly, I need it. The challenge continues, but I try to remember what my friend Kathryn tells me: “You’ll get there.” Posted by Pam Fisher at 7:43 PM 6 comments: Labels: best friends, cochlear implant, cochlear implant surgery, destination wedding, Jamaica, wedding Older Posts Home Subscribe to: Posts (Atom) NetworkedBlogs Follow this blog Popular Posts Jeff and I post-surgery with my new friend, "Jock Strap" When I woke up in the recovery room, my first thought was: "I... resolutions, usually taking the form of masses of people running t... This week I had a birthday. To celebrate my 32nd year of life, I had scheduled an early morning pilates class and later a one hour massa... When I shared my blog on Sunday night, my body was buzzing in fear and vulnerability. The 24 hours following the post proved to be one of ... I met my husband in October 1999. I was a freshman at Syracuse University, and Jeff was the cousin of my roommate, Kathryn. Jeff... We survived. 3 days after activation, bucket-free and smiling at my son's first communion. Remember how I claimed I had no expec... It was five years ago when my son, Colin, then a toddler, described my ears as “broken.” It was heartbreaking for me; I didn’t want him (o... A couple of weeks before my surgery, a colleague stopped me as I entered the room. "Can I say something to you at the risk of bein... This past week, I was interviewed for a Massachusetts newspaper. The reporter is the relative of a reader of my blog (Thank you, reader.... Me and Claire-December 2012. “Look at my mom’s COCH-LE-AR IMPLANT!” chimed my daughter Claire as she reached to the right side of ... Blog Archive Follow by Email ____________________ Submit There was an error in this gadget About Me My Photo Pam Fisher View my complete profile Search This Blog Loading... Awesome Inc. template. Powered by Blogger. Audrena's Ears We are Randy and Carri. Audrena, our third child, has bilateral profound hearing loss. Currently we are traveling the path of her hearing journey as she has received her cochlear implants, and we are continuing to expand her speech and language. We started this blog to keep family and friends updated on what is happening during Audrena's hearing journey, and we have hopes that someday it will help another family facing cochlear implant surgery. March 10, 2015 Happy 4th Birthday, Audrena! Today is Audrena's 4th birthday. It never ceases to amaze me how far we have come in the past 3 years. On Audrena's 1st birthday, we still did not know for certain that she was profoundly deaf. We were really just beginning her hearing journey. In the past 3 years, she has endured everal surgeries, countless hours of programming appointments, Aural Habilitation (speech/listening therapy) appointments, physical therapy, doctor visits, and most recently full day preschool. As parents, we have supported her through all of the same plus 19 1/2 hours of IEP meetings. (Yes, I am keeping track. Is there a medal at the end?) And while we have come this far, there are still so many more years of this marathon ahead of us. Audrena has made leaps and bounds of progress this school year, but her articulation is still bad. It's pretty difficult for new people to understand her, so we continue to work on it. For example, she is now much better with the beginning and ending sounds that she used to leave off, and we finally have a /k/! The /g/ is still not there. We can see that she knows it is supposed to made in the back, and that it is different than the /d/. She just has not figured it out yet. But the progress is not fast enough for me some days. I will fully admit that it's hard for me because I wish the hearing loss was the only obstacle. Plus, Reyana and Kelton talked so early and so clearly that it's just what I am used to. I know we'll get there, though, because we have some really dedicated people on Audrena's team. Aside from articulation, there has been progress with language, but there are still areas we need to work on like retelling stories, answering questions, including articles like "a" and "the," and not mixing up works like "I want marshmallow pink," instead of "I want the pink marshmallow." Again, we will get there. It's a marathon, not a print, right? If I remind myself of the broad picture, the miracles are crystal clear. We went from not knowing that Audrena was deaf at her 1st birthday to having a pretty normal 4 year old who can communicate, even if it's not yet perfect. Her teachers tell us what we already knew...that Audrena is a smart little girl that will go places. Ok, I am boasting. We love all of our kids, and they are ALL going places in life. But she IS a smart little girl. She is an adorable, happy, healthy, spunky, stubborn little redhead. Some days that headstrong little girl makes me crazy, but at the end of the day I wouldn't have it any other way. I wouldn't trade our baby, or the hearing loss, for anything in the world. This journey has been hard and has tested us time and again, but it has been fantastic in ways we never could have imagined. We have learned so much about ourselves, our children, and our family as a whole. It has brought us closer and showed us to appreciate the small things. We have big dreams for Audrena. Wouldn't it be fantastic if she grew up to become a cochlear implant surgeon? Or the first woman president? No matter what she chooses to do in life, we are confident that she will do it with that unmatched red-headed determination and with that trademark one-sided double dimple of a smile to win everyone over. Look out world! Here she comes! And about this birthday? This year she partied with Chuck E. Cheese and told me which color flower she wanted to eat off of her birthday cake (the birthday child chooses the first piece). This birthday she can actually sing Happy Birthday to herself with a better sense of tune than I have! This birthday we gave her a bike because we know that, even with an imperfect vestibular system, she will learn to ride in order to keep up with Reyana and Kelton because that's the way she rolls. Happy 4th Birthday, Audrena! You are a truly amazing gift from God. [image1.JPG] Grandma and Grandpa gave Audrena this dress for her birthday. She told me she was wearing her pink and orange dress (check out the pink and orange balloons on it) and that she can twirl in it. :) Posted by Randy and Carri No comments: Email ThisBlogThis!Share to TwitterShare to FacebookShare to Pinterest January 30, 2015 Waardenburg Syndrome? From the beginning of our journey, I started reading about the genetic causes of hearing loss. I read about the characteristics of Waardenburg Syndrome, and I started to ask questions. We were always told no, that Audrena would have unique facial features if that were the case. Since the Usher Syndrome mix-up, we have been seeing a really great ophthalmologist at University of Iowa Hospitals & Clinics. We see this doctor periodically to keep up with Audrena's eyeglass prescription and also because she works in genetics as well. She has been working hard to determine what caused the unique characteristics that Audrena has: heterochromia (her eyes are 2 different shades of blue), hearing loss, inner ear/vestibular structure abnormalities, etc. Over the summer, she asked if we had ever heard of Waardenburg Syndrome. Randy explained that yes, we had always questioned it because heterochromia and a lighter forelock runs on my (Carri's) side of the family. She explained that because I have the lighter color forelock and because of Audrena's characteristics, she would like to send a sample to be tested for Waardenburg Syndrome. Type II does not have the distinct facial features, and only roughly 20% of people with Type II have hearing loss. However, she said it does often come with vestibular structure changes. Of course, we agreed to the testing. The test results showed one variation on each of two different Waardenburg Syndrome genes. However, those variations were ruled "not likely." Because the testing is relatively new in the world of genetics, the doctor asked us to do further testing. She will now be comparing samples from me and other members of my family who have the traits to try to prove her theory that we have a mild variation of Waardenburg Syndrome. If we do, the good news is that it does not change anything for Audrena. It is not progressive, and nothing else will develop. It is what it is. For the rest of us, it could be very informative, especially as the younger generation starts to think about having children. However, if she does not prove anything with the testing, then we still do not have an answer. I trust this doctor, though, and I think she may be correct. I guess time will tell, but given what we went through thinking that Audrena might have Usher Syndrome I will take Waardenburg Syndrome, or even the unknown. In the meantime, we will continue to see this doctor for Audrena's glasses. It's a long drive, but it is worth it for the quality of care! School Update Today is the 100th day of school. I can't believe how fast those 100 days went! Reyana loves her teacher and is really enjoying 2nd grade. Kelton has matured so much in Kindergarten, and his teacher is fantastic. It has been a great year for everyone, especially Audrena. We have seen a huge growth with Audrena this year. It seems we ("we" meaning her IEP team as well) have found a good combination of services this year with full day school, her SLP-A, and her speech therapy. I know we have a long way to go to get her caught up, but I also can't believe the amount of progress she has made this year. She is asking more questions, and more importantly, she is answering questions and taking turns in conversation so much better. Her vocabulary has expanded, and she is talking so much more. The average length of utterances has also gone from 3-4 to more like 4-6, and occasionally even 7 words. Audrena has developed quite the personality this year. She keeps us all laughing, and she is the typical bossy little sister to Reyana and Kelton. Even when we are in our van on the interstate, she hears what Reyana and Kelton are doing behind her and tattles on them every chance he gets. Kelton was taking pictures with my iPhone one day as we drove down the interstate, and she made sure to tell us when she heard the camera click! Like every other child out there right now, she loves all things Frozen, and she tries to sing along with the songs even when she doesn't know all the words. In school, they have been working on typical preschool things like letters, numbers, shapes, and colors. She can identify almost half of the letters randomly, she writes her name, and she knows her shapes and colors. I lost track of how far she can count, but I think she gets to around 15 before she starts missing numbers. I still worry that she will not be caught up by Kindergarten, but I can afely say that I feel much better about where we are than I did over the summer. I can finally see the pace starting to pick up. We will continue to keep the ball rolling and even speed it up. Recently in the sound booth, Audrena tested from 5-25 dB. There was one frequency where she was at 5 dB, and one where she was at 25 dB. Overall, she was hovering consistently in the 15 dB area. We are so impressed with her programming! Audrena has started to tell us when her batteries are low, or when she needs more toupee tape on her Naida processors. She asks for her "water ears" at bath time (the Neptune processors). And she has become a good little lip reader. We use very little sign language at this point, and yet if she is in bed and doesn't have her processors on, she still often answers our questions appropriately. The miracle of cochlear implants never ceases to amaze us! Even with its limitations, the technology has provided Audrena with so much more in life than we ever dreamed possible when we started this journey. We knew that some access to sound would be better than none at all, but the results have far exceeded our expectations! August 22, 2014 First Day of Preschool 2014 Audrena started preschool today. Her IEP team has a big year planned for her, and hopefully it will bring great things. Audrena will attend the "regular" preschool in the morning, then speech, lunch, recess, and Early Childhood preschool in the afternoon. She has a wonderful SLP-A (Speech-Language Pathologist's Assistant) who will be with her during the school day this year. We are so excited for all of the language learning and wonderful progress that she should make this school year! We are very thankful for a good school district with dedicated professionals as well. This morning we arrived at school, took the obligatory "first day" picture in front of the school's sign, and barged into the SLP's office. Audrena loves her, and that's the first place she wants to go when she gets to school, whether she should be going to speech or not. So the SLP walked with us to take big brother Kelton to his kindergarten classroom and then on to the preschool room. Audrena saw her Early Childhood teacher and thought she should go right into that classroom. We had to explain that she has a new classroom in the morning. Once we were in the door, she found the ramp and a toy car, gave me a dismissive wave and a quick, "Bye bye!" That was it. She wouldn't even turn toward me for a quick picture. The SLP-A offered to take a picture later and send it to me, but I had what I really needed...a happy girl on her first day of school. [photo.JPG] July 25, 2014 Our Summer Vacation This year we were able to attend the summer parent workshop at The Moog Center for Deaf Education. What an amazing place! We learned so much, and we totally recommend attending if you have a deaf or hard-of-hearing child! Totally. I will warn you, though, by the time the workshop is over you will want to pack your belongings and move to St. Louis. They are that good. While we were there, they did some evaluations on Audrena. The results were not quite what we had hoped to see, but we are thankful that we were able to bring the report back and make some positive changes on Audrena's IEP that should help her make good progress. We have a good chool district to work with, and we still hope to meet the goal of having Audrena caught up by kindergarten. In order to make the stars align for us to be able to attend the workshop, we needed someone to care for Reyana and Kelton. Thank God for family. My sister was able to go with us to St. Louis so that we could make a vacation out of it. She cared for the big kids while we attended the workshop from 9:00-3:00 each day. They swam in the pool and relaxed in the hotel suite. In our free time, we were able to go to the St. Louis Zoo, The Magic House Children's Museum, and The Gateway Arch. It was a great family vacation, and I can't thank my sister enough for making it possible! Here are just a few photos I have readily available on my phone. [photo1.JPG] [photo2.JPG] People have always told us that Audrena would be the first deaf woman president. Maybe they were right.... [photo3.JPG] [photo4.JPG] My sister stayed at the bottom with Audrena while we took Reyana and Kelton up inside of The Gateway Arch. Here we are waiting for the "car" to pick us up. [photo5.JPG] We were assigned to "car" 3 on the way up. Siblings of Children with Hearing Loss Here is a good article about how to best support the siblings of children with hearing loss. It's something we struggle with in our household. We always feel like Reyana and Kelton give up a lot for Audrena, so we make a conscious effort to do things that involve only them. It's hard. They don't always understand that the therapists are there to help Audrena learn to talk because it looks like play to them. The physical therapy time looks like a fun obstacle course, and they want to participate. Well, Reyana understands a little more because she is the oldest, so she does things like reading bedtime stories to Audrena, knowing on a 7-year-old level that she is helping her little ister. But there are plenty of times when it's just plain unfair that Labels: news articles February 21, 2014 South Dakota Senate Bill 122 We have been busy lately. Work, children, Girl Scout cookie sales, and politics have been consuming our time. Yes, politics. I've been busy mailing letters and e-mailing our legislators. Wednesday morning I got up at 4:00 am and drove the 4 hours to Pierre to testify in front of the Senate Health and Human Services Committee. Then I drove the 4 hours back home. So what was worth 8 hours on the road for such a short time? Children. Particularly children with hearing loss. You see, Senate Bill 122 is an act to require insurance companies to cover audiology services, hearing equipment, and associated therapy for children with hearing loss in South Dakota. What is more worthwhile than giving children a chance to hear and speak to the best of their ability, regardless of whether or not their parents have the financial means to purchase hearing aids and speech therapy? We are fighting. And we are not finished yet. There is more work ahead. But with the support of our fellow South Dakotans we may just succeed. I am asking all South Dakota readers to please contact their legislators (click the link to find yours) and ask for a YES vote on SB122. Pass the message on to your friends. Act quickly because the bill will be heard Monday morning again. Let's give South Dakota's deaf and hard-of-hearing children the chance to speak because our children are the future voice of South Dakota. P.S. If you listen to the audio on the website, you might just hear me testify. Just know that I was not at my best. I was trying very hard to hold back the tears, so I needed to take deep breaths, and I cut my peech short to give the many other parents behind me a chance to speak as well. We had a great turnout of supporters! ~ Carri Posted by Randy and Carri 2 comments: Labels: South Dakota SB122 January 30, 2014 Current Happenings on Audrena's Hearing Journey We've been wading through the preschool evaluations, and we're almost finished. Currently, we are planning for Audrena to start preschool on March 11th, the day after her 3rd birthday. This whole process has been a new adjustment for us. Just when we think we're getting used to things! Audrena had programming last week. She had been putting her hands over her ears at loud sounds, so we knew something had changed. It worried us a bit because it happened pretty suddenly and shortly after a bump to the head. As it turns out, her impedances were fine, so she just needed to have the programming tweaked a bit. However, we were urprised when one of her Naida processors gave Dr. M. issues during programming. Then we were even more surprised when the Neptune for the opposite ear caused the programming software to crash. So Advanced Bionics replaced both processors, and when they receive the others they will do some additional testing to see if they can figure out what happened, whether it was a static shock, moisture, or some other issue. It seems that we go through a lot of parts, but we are always pleased with AB's service. We also understand that we are dealing with the newest technology, and that doesn't come without some bugs. Here is a recent photo of Audrena with her Naida processors. If anyone has any fantastic suggestions for us about how to keep them on, we would love to hear them! Her glasses cause the processors to slide off her ears if they are not secured. Plus, we don't want to take the chance of losing them. We are currently using toupe tape, which works, but her hair gets caught in it. She loses chunks of hair, and some days I think it's a miracle she has any left around her ears. Also, it makes her ears look a little funny because of how the tape sticks. I am going to order some huggies to see if that works. It seems like if there was a product that attached the processors to her glasses they would stay in place better. Maybe I should invent something! [1544298_10203296169143631_1014929833_n.jpg] I will leave you with some big news. It's big in our eyes anyway. We are going to attend The Moog Center's Parent Education Workshop in June! We are SO excited! After much debating about whether I could get away from work, whether Randy could get away from work, and what to do with our other children, we decided to just book the trip! My sister plans to go with us, and we'll take the big kids along. Since we will have evenings open to do other things, it will be a family vacation! If one or the other of us is unable to go, we'll adjust our plans and one of us will still attend. We feel like this is going to be a great learning experience, and Audrena will get some fantastic one-on-one time with The Moog Center's personnel! Posted by Randy and Carri 1 comment: Derrick Coleman Surprises HOH Girls Below is a link to a great piece by ABC News about Derrick Coleman, a deaf Seattle Seahawks player, who surprised two hard-of-hearing (HOH) fans and their family with tickets to the Superbowl. I'm not big on football, but I just have one thing to say. Pretty cool, Derrick. Pretty cool. http://abcnews.go.com/blogs/headlines/2014/01/seahawks-derrick-coleman- urprises-hearing-impaired-girls/ November 21, 2013 A Little Update In the next few weeks, Audrena will be evaluated as part of the transition from Birth to 3 to the school district for services. I am interested to see what the evaluation brings. She is putting 3-4 words together. However, I feel like her vocabulary is still lagging behind a bit, and she is still leaving out the beginning and ending consonants more often than not. For example, one time she might pronounce "puppies" crystal clear, and the next time it might be "uppies." "On" and "off" both lack the endings more times than not. We are working on it, and we've seen some improvement. Our current SLP through Birth to 3 has done a great job with Audrena, and we are seeing some really nice progress. We have been using the Naida processors nearly exclusively now. It's new technology, and there have been some bugs. We kept losing mic protectors from one of her processors almost daily, and before long we noticed that the mic just wasn't crisp and clear like the other. So we witched back to the Neptunes and sent the Naida in for replacement. The replacement had issues of its own, giving random red lights or orange lights. The orange light would ordinarily mean the battery was low, but we found that it didn't matter what battery we put in, it would still show that the battery was low. So again we had it replaced. Audrena is hard on cords, so we have had to replace those a few times as well. We went through that with the Neptune cords, too. She is just rough with them. That's why it is SO important to be very conscious of your child's cochlear implant equipment. We constantly monitor things because if she is not getting good quality sound, she can't catch up as quickly with her speech and language. The Naida processors can use the T-mic 2. We have heard they are generally not recommended for small children because there is no good way to monitor whether they are working. However, our Audiologist wanted us to use the T-mic 2 because it delivers the sound into the opening of the ear, where it naturally would be heard. Also, studies how better outcomes with T-mic usage than without. As closely as we monitor Audrena's equipment, that concerned us because we couldn't really check the T-mic's function, yet we wanted her to have the best possible listening opportunity. Dr. M. explained that she would be programming it to use 50% T-mic and 50% processor mic. That would really function as a 100%/100% arrangement because if the T-mic were to fail, Audrena would still get the sound through the processor mic. She could monitor the T-mic via booth testing outcomes by switching off the processor mic during testing and then testing again with it on. So we agreed to try it. We also think we have figured out on our own how to test the T-mic with it being programmed this way. When we do listening checks, we simply tightly cover the processor mic with our fingertip, and we can hear the sound only through the T-mic. We know the sound is coming into the T-mic because if you get close enough and the air from your mouth hits the mic, you can hear it just like wind. I'm not sure if that's in any way reliable, but it seems to be working for us. We feel like Audrena is getting better sound with the Naidas. It may or may not be coincidence, but she has had a speech & language explosion ince we have started using them. One thing we haven't quite figured out is how to keep them on without using toupe tape. Her glasses get in the way, so they don't sit perfectly on her ear. Tape seems to be the only solution, and it works well, although we sort of hate it. Her hair eems to get stuck in it no matter how careful we are. If anyone has a olution, I would love to hear it! Labels: Advanced Bionics, Naida Older Posts Home Subscribe to: Posts (Atom) Subscribe To [arrow_dropdown.gif] Posts [subscribe-netvibes.png] [subscribe-yahoo.png] [icon_feed12.png] Atom [arrow_dropdown.gif] All Comments Follow by Email ____________________ Submit Blog Archive Labels CI Circle: for Parents of Children with Cochlear Implants There was an error in this gadget Feedjit Feedjit Live Blog Stats Picture Window template. Powered by Blogger. Adventures of Butters - RSS publisher Hear We Go! The Adventures of Butters Sharing my trials and tribulations of helping our infant son to hear and navigating our way through EVA/LVAS and Mondini's Syndrome. Pages Follow by Email ____________________ Submit Sunday, September 13, 2015 Going Into Retirement It's not just a matter of keeping up with this blog (although I find it very difficult to do so lately), it's the whole process of speech, language, etc. that we engage in on a daily basis that Bud has finally gotten the hang of, that I just simply feel as if there's not that much to post about anymore. We still have our articulation issues, but he's making sentences and major progress week to week. This year, he goes to an in-home day care three mornings a week, which has helped him ocially and in the language department. There is a wonderful preschool curriculum there as well. We have also added another speech preschool the other two mornings a week along with an hour of speech. After having a bad experience with a speech therapist who only wanted to emphasize sign language soon after moving to Maryland, along with about seven months at another speech facility which wasn't bad, but we weren't getting anywhere, I finally found a wonderful speech therapist who specializes in auditory/verbal therapy. It really does make a difference. Bud has made major strides in his language and we couldn't be happier. He may not perform as well as his hearing peers or even another child of his age with cochlear implants without Mondini's Malformation, but he has come a very long way. There's still work to be done, but we are on the right path. I'm "retiring" this blog because I felt the need to reach out to other parents going through our situation. I hope that I was able to help and to be a source of information as well as someone who could offer upport. I feel that now, with Facebook groups, and other internet resources and groups, there are other people out there as well as online magazines, that can offer much more assistance than I ever could have. This blog was also to be a support system of sorts for myself, especially in the beginning when we found out about Bud's diagnosis. Even though I still have those days where I'm a little dejected over my on's "special ears" and how he is now noticing that his ears are different, or I'm having one of those days where I'm comparing his language to other kids his age, I no longer have that deep anxiety over how my child would cope with hearing loss. I don't dwell on how he got to be this way, or how I could have done things differently. I understand now that there are only so many things that are under our control. I'm primarily focused on the little things that we can control, and being happy.... and most of all, grateful. Grateful for the little things, and the big things, such as the technology that has made it possible for our son to hear. Thank you to all who have read the blog and kept in touch. I hope to till keep in touch with you (probably through Facebook). And I wish nothing but the best to you if you are going through this same journey. There is hope. It doesn't happen when you want it to happen, it happens when you least expect it. Posted by Eleanor Jones at 3:23 PM No comments: Email ThisBlogThis!Share to TwitterShare to FacebookShare to Pinterest Monday, February 9, 2015 Wake me Up When February Ends I simply want to hole up like a bear and remain that way until the twenty-eighth (or twenty-seventh. I never keep up with Leap Year) of this month. You see, February has been the month that I have always despised more than any other month of the year. I think it started in junior high with all that Valentine's crap. I really shouldn't feel this way. After all, Bud's birthday is in February, but so many bad things have happened or seem to all happen in February. And it doesn't even seem to help that it's the shortest month of the year. February's case is not being helped this year since it will mark the first year of my dad's passing and that has been weighing heavily on my oul. It's taken me exactly a year to even start to accept that he's not coming back. There are some days where I question if his illness, days spent as a kid with him helping me with my homework, him walking me down the aisle, even happened or if it was somebody else's life. That's my new issue with February. Then February turns around and tinkles in my Cheerios: the whole family has been sick with a respiratory thing and it leaves you guessing as to whether you will ever recuperate. Bud has had colds before, but they have always been short-lived. For a NICU baby and for also still being underweight, he has always seemed to be a pretty healthy guy. But this thing has really knocked all of us for a loop, and Bud is trying very hard not to let this thing keep him down. Just when we believed that he was getting over it - head is less stuffy, cough doesn't sound like a horse with tuberculosis, he wakes up at three in the morning (nothing good ever happens at three in the morning) sounding like that horse with tuberculosis. And I just knew, at three in the morning, that I would be taking him to the clinic - not as early as I had expected ince he slept in, but I knew. I got him to this super great children's walk-in clinic (we had been there once before) and we waited to be seen by the doctor. She was fabulous. I immediately told her that I was probably overreacting but because of his "ears" I didn't want to run the risk of Bud getting an ear infection. I was feeling pretty confident since I always take him to get his ears checked out at the end of a cold, but something in the back of my mind said not to jump up on my high horse just yet. Good thing I didn't. He has a slight infection in one ear and fluid tarting to build in the other. She said that we caught it very early and that's probably why he had not been complaining about ear pain. We got our antibiotics right there in the office. She wanted to "go ahead and nip it in the bud," (no pun intended) and Bud got to play in the play house (with a working door bell!) while she set up the antibiotics. Love that place. He will be seen by his regular pediatrician in a couple of days for a check up so we will have his ears looked at again. Yes, I realize that seems redundant, but let's top a minute and talk about the sense of urgency you feel when your child's implants might be jeopardized. You never want to waste a econd to get your child's ear infection cleared up if it's possible. Let's also talk a second about how we wouldn't have even been able to move our regular doctor's appointment up to today because it sometimes takes us two to three weeks to be seen. Longer conversation on the travesties of our health care system in another post. Today, let me revel in one small victory. As wonderful as the kids' clinic is, it's torture on the parents trying to drag their kids away, or at least my kid, from all of the wonderful toys and the play house with the working doorbell. I had to literally drag Bud out of the office kicking and screaming and we lost his Superman hat in the midst of the melee. That lead to an unplanned and much later in the morning trip to Target ("Tahgit! as Bud says) in an effort to pick up another hat. We're not finished with winter up here yet. I don't even have the energy to get into the "Tahgit!" trip as we were just going in for a hat and I let him walk in without putting him into a cart. All I will say is that with the exception of having to hold my hand until we got to the boys' section, he was free. He enjoyed every minute of it. I did not. When we got home, he collapsed into a bundle of coughs, snots, whining and general irritability. It was an early nap time, and I had to go back in and help him to settle down to sleep several times this afternoon. I slipped back into that old, horrible feeling of "my poor child who can't hear." I know, I hate it too, and I hate feeling that way, but it was a fleeting thought of how a simple cold can become a much more serious matter for a child with implants. I hated that he had to go through all of this. Again. And I hate that we will always go through this. Again. February isn't helping either. It's hard. It's sometimes one of your most bitter cold months. It's highlighted by the capitalists' obsession with making money off desperate men to please their wives, girlfriends, whoever, and it brings women and girls to tears if their ignificant others don't come through, or if they have no one to love at all. February feels the need to pull out that poor, fat little fuzzy groundhog out of his comfy hole in an effort to appease the masses that winter will come to a quick end. And every year on Groundhog Day it never fails when that voice in my head screams "Leave him the hell alone!" Seriously, where is PETA? I have been feeling like that groundhog probably felt. It's a passing feeling, it's a phase, but it's also a beaten down feeling. The feeling that you just about have everything under control, and then uddenly, there's more speech appointments, everybody gets sick, and then there's the first ear infection, warmer temps followed by surprise winter weather warnings, and then the reminder that you no longer have your father and you still don't know what to do about it. It's the ensation that grips your chest when you realize that technically you're an adult, but maybe you're just not that skilled at it. And that thought is abruptly interrupted by a shrill shrieking of your three year old letting you know that you damn sure better figure out at least how to pretend to be an adult. Posted by Eleanor Jones at 2:47 PM No comments: Tuesday, February 3, 2015 Speech Just a quick update since I'm trying to keep up with this blog. We now have Bud going to speech twice a week now, so we will see how that goes. I do feel it's warranted as he still is not quite caught up to his peers. He is just now putting sentences together but some of his words are still difficult to understand. But he is still talking a million miles a minute and always narrating or calling out whatever he ees. Some of our new phrases; "Waffles breakfast," "Bath then night night," You do it." "Potty Pwactice" is also very popular even though it is driving me insane with his constantly getting on and off the potty, and "tinkles" end up getting everywhere. Not to mention when I think we have it down, he completely stops. I'm beginning to think that I will still be potty training him when he's eighteen. He also calls me "Momene" probably because he is always missing that 'm' sound. I'm also lately hearing the phrase, "Momene do it!" Overall, we're excited about his progress, but I also realize that preschool - real preschool is right around the corner so I'm admittedly panicking a little. Posted by Eleanor Jones at 2:36 PM No comments: Tuesday, November 4, 2014 "What Keeps You Up at Night?" This was the last question asked of me during my initial meeting with the coordinators from the Infant/Toddler program. They came out to our house a few weeks ago (yeah, lagging behind on the blog again) to assess Bud's speech and growth development, and to find out a little more about what our family's needs would be - which is fantastic - but I was not prepared for that last question. My first reaction? Uhhhh. Then, my second thought was, "Yeah, hope you packed a sandwich 'cause this could take a while. A long while." I don't know if any of you have ever been asked this question by any members from your assessment team, or from just plain anybody, but it really struck a nerve. Not that I was put out by the coordinator asking this question, but because I finally had to come out and actually say - out loud, that my biggest fear was worrying about how hard my child will struggle with leading a regular life. He can hear pretty well now, but how clearly will he be able to hear in the classroom and concentrate once he's in school? He barely sits down to play for more than three minutes, will he ever be able to participate in circle time? Will the other kids give him a hard time because of his "ears?" Will he begin to feel badly about himself because he's the only kid in his class with those "ears?" It's taking a long time to get his speech up to par with his peers, how do we get there, and will we ever find out what's causing his gap in speech development? Of course, we are still praising the miraculous technology of cochlear implants and Bud has come such a long way. But as I have been saying for the past two and a half years on here, there's a lot more work to be done before we can proclaim that we have finally made it. And when it comes to your kids, you're always going to have something on your mind to keep you up at night anyway. Our coordinator then asked if that was the only thing that kept me up at night, worrying about Bud's progress, and I replied that it was despite the other thoughts in my brain screaming to be let out such as: 1. Ebola. Okay, really, it's this whole "self-monitoring" protocol and the eight million different ways that each state should handle it. Or not. 2. That enterovirus making so many kids across the country sick and landing in hospitals. 3. Did I take out the chicken to defrost for tonight's dinner? 4. How many years do we wait to try and buy and invest in a house? 5. Too many more questions regarding the economy to list here. 6. How many more friends/family members/ people close to me will I hear about getting cancer before the end of the year? It's happening so much more nowadays. 7. Does Bud need regular preschool, special preschool or a combo? Should I even think about homeschooling? But what if he ends up having a shooting at his middle school? 8.. Did I brush my teeth this morning? 9. How much more will society collapse before my son turns eighteen? Will college even exist? I kinda hope not because there will be no way to pay for it by then if costs don't come down. To honor my OCD and make this list an even '10' 10. I think I just left my purse in the grocery cart (I realize as I've been driving in the car for fifteen minutes and now I'm halfway home). Just a sampling of my brain on a daily basis. Yes, I do acknowledge that I should be admitted. Maybe all of this is normal with the thoughts racing, the worrying, the forgetting. Maybe most of our fears are unwarranted. Maybe it's hard for us to face the unknown and to get past the fact that we can only control what happens in the present, and even then it's to a default. It's the need to control and the need to protect - especially once you have children. Because as joyful as children make our world, it also becomes a much more fearful place for us as parents when we think about just how complicated that world can be. Posted by Eleanor Jones at 2:56 PM No comments: Saturday, September 20, 2014 Made it to Maryland We finally made it to Maryland. Actually, we got here Labor Day weekend, which if you're wondering, it is a really crappy time to move. Our stuff didn't arrive until four days later, which meant that we transitioned from living in one empty house to another empty house again for a few days. Bud did great - he saw it as indoor camping. I actually ended up sleeping in his toddler air mattress since he preferred sleeping on a pallet on the floor. Eating while standing was not anything out of the ordinary for me since I have to do that a lot while Bud is up and about. Having no tv WAS out of the ordinary. Bud was missing his Bubble Guppies and I was missing all of my History channel line ups, Mysteries at the Museum, and various other ghost hunting shows (there's an excellent new hillbilly ghost hunting show now), and the Food Network's competitive chef challenges. It's a huge relief to finally get settled, but there's still so much left to do. We had some furniture that got broken during the move it and needs replaced, getting stuff switched over to another state, trying to get Bud set up with the infant/toddler program up here (we're on week 2 now, they somehow did not get him properly set up in the computer system when I first called - uuuuuggghhh), so as I wait on the state's system this leaves me in kind of a holding pattern as to what services, what days, etc. we will be able to receive. This leads to getting Bud into another preschool program. I was told by the infant/toddler program that they would probably be able to help with that - terrific, but he's got to be put into the system and we have to wait on a service coordinator to call and set something up with us. So, as it usually happens, my own damn self will find something, because I can't depend on the people who are supposed to be doing it anyway. On the plus side, there are tons of options here versus when we were in North Carolina. On the negative, stuff fills up just as quickly here as it does anywhere else (just how many kids were born in 2012?) but it's trying to decide which program would be best suitable for Bud's needs. There are lots of wonderful private, church run preschools but they are about a million dollars even part-time. I have managed to narrow it down to a few options: the Hearing and Speech Agency (HASA) in Baltimore has the wonderful Gateway school, which is completely auditory/oral. They also have a parent/toddler auditory/oral group that meets once or twice a week. Baltimore is only a half hour away from us, but I can't get any information about tuition - which is probably not a good sign. That's like going to a Mercedes - Benz dealership and finding the beautiful, white convertible and you ask the alesman, "How much?" and he proceeds to go on and on about all of the perks of the vehicle but refusing to give you a quote. That's kind of what I've been getting with this place. I have even come out and asked (because that's how I roll) and the reps just act like they never even heard my question. River School is out - way too expensive and then it takes about an hour to get into DC. Then there's the Maryland School for the Deaf, which has a campus in Columbia, only 10 minutes away from us! The reps I have talked to sound fabulous, and the curriculum ounds equally as fabulous. They teach a "World Concept View," in an effort to get the kids ready for kindergarten. I don't really know what a "World Concept View" is, but it sounds all warm and fuzzy. And it's all FREEEEEEE! I haven't taken the tour yet, but I'm planning to, and I just need to know if Bud could go part-time. My only hesitation is that they divide the program between spoken language and sign language. I have no problem with sign language, and I feel like it's a good idea to learn it. My hesitation is that Bud never really took to ign language, he instantly began to read lips whenever his ears were off, and I'm concerned that he won't get the complete immersion into a completely auditory/oral program. He needs to be around spoken language to acquire spoken language. We also have a possible opening for a co-op preschool that is waiting to get enough two and a half year olds to begin in January, so that's good, but what do we do until then? Also, the Catholic preschools, along with the public run preschools here start when the kids are three years old, and that's not going to happen until a whole year from now. That leads to my other option: an in-home day care. Yes, the other day cares either do not have the part-time option, they are full, or they want the kids to be potty trained (I'm not even broaching that topic now, that's a whole other post). Also, Bud can't handle an all day program. He is exhausted by noon from running around, listening and understanding what he is hearing. He still has not built up his tamina yet. The last thing that I want to do is burn him out before he is even three. Yes, I understand that you have to push as much language as possible in these early years, but every child is different, and this child is one who will shut down just as fast like a bank on Christmas Eve if he gets tired or bored. With all of that being said, he has been doing wonderfully with his language just being around us at home during this transitional stage. He is now saying two to three word phrases, he continues to repeat new words and applies them on a daily basis. He is engaging in imaginary play, picking up his toy cell phone, holding it up to his ear and aying, "Hewoh?" We're excited about his progress, but we know that there's much more work to be done. It's just the waiting on other organizations, the money (will we eventually have to hire a private therapist?), how many days a week, etc. etc. I actually made myself sick last week with a migraine trying to plan this stuff out (worrying) which really doesn't do a lot of good, but I can't just sit around and wait for something to happen either - and it's really not the language so much that I worry about, it's the sensory/motor planning issues that I'm seeing that concerns me the most. Bud's words and sentences are often hard to understand. You can clearly tell that he is forming sentences, and talking about what he is doing, but you can only make out one to three of the words in his sentences - and he gives you this look like, "Geez, lady, why don't you get it?" I think that's what's killing me right now. We're doing a ton of language work and whatever activities that we can, but there's a glitch in his system that's holding him back a little. Some words he can say as clear as glass, and then within the next ten minutes he'll say the word again and it sounds completely different. And we haven't gotten help yet - and that's what has me about to jump out of my skin, while I should be enjoying my child, and being grateful of his progress so far. Posted by Eleanor Jones at 12:00 PM 2 comments: Wednesday, July 30, 2014 Not Quite Finished with CCCDP Just Yet [IMG_3152.JPG] Well, I thought we were finished with Bud's audi team in Durham at CCCDP, however we were having difficulties with his left processor yesterday. Actually, his processor would flash orange every once in a while the past two weeks, but it completely went on the fritz first thing yesterday morning. I played around with all kinds of stuff on the processor, the cables, etc. I checked his remote and it told me that the processor was on the wrong ear. Incorrecto, Remote Assistant, as I had checked that already. Not that I ever put his processors on the wrong ears - ever :) His processor finally began to flash green when I put it on Bud's ear for the millionth time, and he seemed to do fine, so I went ahead and ent him on to school. Everything was still fine. Then, last night, he was flopping around on the couch watching Bubble Guppies, his ear came off, I went to put it back on, and then the flashing orange crap again. Nothing me or hubbers did was going to bring it back to life. So, just to rule out every possible (and horrible) issue, I took him to Durham, a one hour and 15 minute trek forcing us to leave the house at 7:30 this morning. This meant shoving sausage patties into a snack container and having Bud eat it in the car on the way. Luckily, I had called Cochlear yesterday while Bud was at school in anticipation of the thing completely dying within 24 hours (I was right on that one), and they believed that it was due to a faulty wire in the cable leading to the coil causing a weak connection. We think this was caused by Bud pulling his ears off and yanking at the cable when he is mad or when he is trying to help us out by taking his ears off before nap and bedtime. As a bonus for making an impromptu trip to Durham first thing in the morning, we got another left ear booth test with a mapping (let me just ay that trying to keep a two year old focused during a booth test is like trying to wrestle an alligator). Bud now has his sensitivity levels tuned up so that he truly gets surround sound now, which is exciting. And, as we all figured, his processor just had a bad cable and wire. But I will admit that I had a panicky moment when I saw that flashing orange light. It was a little sad to leave - again. This was where Bud got his start and where his hearing journey began. The people in North Carolina who have worked with him these past two and a half years treated him as if he was their own, and that's something that we will never forget. Posted by Eleanor Jones at 1:59 PM 5 comments: Wednesday, July 16, 2014 Last Mapping for North Carolina [IMG_2587.JPG] We had our last mapping (last week) in Durham and it went well. "Well" meaning that we managed to get a twenty minute booth test on his right ear. Bud actually did the behavioral test by placing puzzle pieces up to his ear and putting them back into their slot every time he heard the sound being played. However, the puzzles were the only thing that he wanted to play with, and after that twenty minute span, he was done and there was no getting any testing done out of the left ear. That's okay, since that was the first time that he cooperated for that long. Also, I really wanted to know how he would respond with his right ear anyway, since he always turns towards his left side during our Ling 6 ound checks. It doesn't matter if you are coming from behind him on his right side, if you make a sound, he turns to his left. Nobody can help me out with an explanation for that one, but we have noticed that he may be left handed as that is his predominant hand that he uses for a lot of activities. Bud was scoring in the 20 db range again, so we are excited about that, and even more excited about how many new words he uses every day. I wish I could give you the number of just how many words he has now, but I have been a huge slacker lately with all of the house searches with our impending move late next month on top of a whole lot of other tuff, that I just haven't done it yet. We still have not quite reached the two word stage yet, but it is so close. Every now and then he will say "Eat Lunch," but it's infrequent. We also still have not been able to get into occupational therapy. Even with insurance approved we are on a lengthy waiting list and I'm really not sure if we will be able to get an initial evaluation before we move to Maryland. I seriously had no idea that in our relatively tiny town that there are that many kids who need OT? Anyway, we are making progress, and Bud started back with his preschool last week for the July summer session, but it gives me time to work on house searches along with lining up new doctors, etc.( I won't even get tarted on everything I have to do). But I have to admit, as much fun as he has at school, he definitely gets a lot more "froggy" with his behavior. I am hoping to do a better job with keeping up with this blog. I have pretty much been sucking at it lately and I apologize, but life has been getting in the way. And Pinterest. Yes, I will fess up and say that some days, I could update this blog, but the lure of Pinterest and all of the offerings that she holds grips my very soul. That and the fact that I am actually attempting a lot of the projects I've pinned. But for the most part, I have been on the phone with realtors most of this week and doing neighborhood searches, you name it. And I think it has all numbed my brain somewhat. But I resolve to keep at this blog. I started this life project primarily to help others going through the ame thing with their children. It's what got our family through the last two years, and I feel as if I need to lend support to other families. And as far as all the rest of the craziness around here goes, it will all work out, it will all get done, and if something falls through the cracks, well, it should have tried harder to get my attention in the first place. Posted by Eleanor Jones at 2:59 PM 2 comments: Older Posts Home Subscribe to: Posts (Atom) Follow Mr. Butters RSS Welcome to Butters' Blog! Butters was born with severe to profound hearing loss and was fitted with hearing aids at three months of age. We also recently discovered that he has LVAS/EVAS, Large/Enlarged Vestibular Aqueduct Syndrome. We also recently found out that he has Mondini's Syndrome as well, i.e. deformed cochleas. This blog is to serve as a journal and a chronicle of "Butters' Events," but I also hope that it will help other families who are also going through this too. We're kinda new to this, but I'm available to offer moral support, some helpful tips that I pick up along the way, so feel free to comment or email. About Me My Photo Eleanor Jones We're a military family, i.e. nomads. Currently stationed in NC and who knows where we'll end up after this. I'm a stay-at-home mom to "Butters" View my complete profile Facebook Badge Eleanor Parnelle Jones [100001393971689.571.828175885.png] Create Your Badge Thank You for Following Us! Blogging Therapy Moments with Jacob With All My Heart Unexpected Blessings No Small Thing Say What? AngelicEars Peter's Tale of Love and Loss OUR JOURNEY Turn On My Ears! Triplet Princes and a Princess Krull Family 5 letters for luke & notes for noah Tayten Matthew That's Just the Way We Hear No Peas Our Little Man's Adventure Evan's Hearing Journey Erin Toes and her Cochlear Implant Journey Insights of a mom with two boys with cochlear implants Topics Blog Archive Search This Blog Loading... Total Pageviews Ethereal template. Powered by Blogger. noah - RSS kip to main | skip to sidebar letters for luke & notes for noah Showing posts with label cochlear implants. Show all posts Monday, April 14, 2014 What a difference a year makes When I look back at my blog over the last year, I realize how much fear I had when I found out Noah's hearing had decreased to a level of deafness. I can scarcely remember those days without my eyes brimming with tears. It was, hands down, the hardest period of my life thus far. The biggest and hardest part was just NOT knowing what the future would hold. The unknown is scary. Well, I feel compelled to write again today because I hope that someday the parent of a newly diagnosed deaf child can read this and see the growth and transformation a year can make. In the course of the last year, Noah went from having a mild hearing loss in his L ear and no loss in his R ear to a profound loss in his L ear and a severe loss in his R ear. We have gotten hearing aids, a cochlear implant, started preschool, continued with intense peech therapy, are learning a new language (ASL) and had another palate surgery. It's been a lot. An overwhelming amount actually. BUT, I've accepted it. I've come to terms with it. I've embraced it. Don't get me wrong. There are still times that it hits me like a ton of bricks, but those times are fewer and further between. But then there are those times that I see Luke and Noah whispering to one another as they play Legos and I'm so overcome with gratitude that I can barely stand it. I met with Noah's speech therapist last week to discuss where he's at, where he needs to go and how we're going to get him there. Noah's annual IEP is coming up in May so I wanted the latest numbers fresh in my mind. Our end goal is and always has been that Noah will mainstream with the rest of his peers into Kindergarten. Accommodations will need to be made, but that he will enter the same Kinder that Luke did and continue thorough there. I know that this is going to come across as 'braggy' but it's my blog, so who cares.... Noah's auditory, articulation and speech is all WITHIN NORMAL LIMITS for a typical hearing child of his age. I'm just so proud of him that I could cry. He has worked so very hard and all his hard work is paying off. So much so, that his speech therapist said that if next year was the year for him to enter Kinder, she would recommend mainstreaming! And Noah has a whole more year of preschool! So, if you stumbled across my blog somehow and you just found out that your child is deaf....I hope that by reading this you can get a picture of the amazing things that your child can do. The fact that the grief, adness and despair that you feel is normal, but I promise you those feelings will be replaced with joy, admiration and hope. I promise. It's hard, but you'll get there. Feel free to email me if you want to talk to someone who understands. Posted by Kate at 9:31 AM 4 comments Labels: audiology, cochlear implants, deaf, hard of hearing, hearing aides, hearing loss, Noah, speech and language Tuesday, October 8, 2013 Hope for the future We went to a wedding this weekend. It was JK's cousin's daughter on his Mom's side (got that?). As we sat down, the lady behind me said, "He's has a cochlear implant" about Noah. I turned around and smiled and saw the cutest 17 year old girl sitting next to her. The Mom then proceeds to tell me, "She is bilaterally implanted". The girl pulled back her hair and I saw N5's on her ears. Noah was overjoyed and kept aying, "She matches me". We chatted with the girl for a bit (and JK's 17 year old 1/2 brother chatted her up quite a bit!) and were amazed at the clarity of her speech. Later that night, JK whispers to me, "Did you hear how good her speech was?" and I had to laugh because that was the first thing I noticed as well. Instances like this are what give me hope. Hope that all this speech therapy, appointments and so forth will pay off and Noah will be a 17 year old who has perfect speech and needed minimal accommodations in school. More about the wedding itself later when LeAnn gets me some photos! Posted by Kate at 3:39 PM 1 comments Labels: CI, cochlear implants, deaf, family, hard of hearing, hearing aides, hearing loss, Noah Monday, August 26, 2013 CI updates Noah has been moving through his CI programs like a champ! My fears that he wouldn't want to wear the CI were unfounded. He asks to have it put on in the mornings and will disconnect it when the magnet falls off. I suppose I was naive in thinking the magnet would occasionally fall off......that thing is reconnected 50 times a day! I have noticed that Noah used a plural "s" spontaneously the other day! I about cried with happiness. We were folding laundry and one of his hirts came out and he said, "That's Noah's shirt". He had the final /s/ sound on both that's and Noah's! SO very exciting! We head back to Stanford this week for our next mapping. Luke has to be the best big brother ever! People do stare and look at Noah and if anyone asks, Luke is quick to jump in with "This is my brother's cochlear implant processor. It's held to his head by a magnet and it helps him hear". It's so precious. Posted by Kate at 1:47 PM 0 comments Labels: audiology, brothers, CI, cochlear implants, hard of hearing, hearing loss, Lucile Packard, Luke, Noah, sibling of special needs kid, Stanford Monday, August 19, 2013 ACTIVATION Last Friday, we headed up to Stanford for Noah's CI activation. Since Noah deafened postlingually, he had already had a significant amount of access to sound. Also, he does wear a hearing aid in his R ear, which provides him access to sound that way, so his activation was pretty underwhelming. It was not similar to the activations that you see on TV where the child hears sound for the first time ever. [image.jpeg] Noah playing the audiology "games" while they test his CI for the first time It was switched on and JK and I were taught how to use the device, which took the majority of the time. For those of you not versed in the CI world, Noah's implant will be gradually turned up over the course of the next 6 months. On his CI there are "programs" and he is currently on Program 1. We will move him up through programs over the next two weeks. At that time, it's back to the Audiologist for a mapping to build new programs. On a quick side note...we got the results of Noah's Exome testing....normal. I don't think that we will ever know the reason for Noah's hearing loss and cleft palate. And really, at this point, what does it matter? I understand that nothing will restore Noah's hearing, but I do feel it's important for Noah, Luke, Wyatt, Cayden, Aubrey, Kyle, Kohl, LeAnn and Nic to know. For them to be aware of potential genetic changes that their offspring may have. Thus far, Noah (as always) has been a trooper. He keeps his CI on asks for help when the coil falls off of his head. I am SHOCKED at how easily the coil falls off. There are different magnet strengths and we will discuss that when we go back in two weeks. I have noticed that now when we are out and about, people take a long look at Noah. I can see their confusion as they try and process what it is on his head. A few have even asked. It doesn't offend me in anyway and I enjoy being able to share with them what a miraculous piece of technology it is. I do get teary eyed when I think of how thankful I am for this amazing technology. It's simply amazing and life changing for Noah. I'm so thankful that he has an opportunity to experience sound again. [photo.JPG] Noah's Cochlear Implant--with a Finn McMissile cover Posted by Kate at 11:13 AM 1 comments Labels: CI, cochlear implants, deaf, genetics, hard of hearing, hearing loss, Lucile Packard, Noah, Stanford Tuesday, July 30, 2013 The BIG day! It's here and gone.....Noah's surgery went FABULOUSLY! I don't think we could have asked for a better experience. We got to the hospital at 6:00 am and Noah was a bundle of energy. We explained to him what was going to happen and I think he understood as much as a 3.5 year old can. Ready to go! My precious little man. Surgery took about 4 hours. Dr. Oghalai called us back and told us right off, "Everything went perfectly. Noah's surgery was routine and the electrodes were showing nerve response, which is a good prognostic indicator of success". I didn't realize until after we talked with him, how relieved I was for that part of it to be over! [image+(2).jpeg] In recovery. Notice that Curious George also has a cochlear implant! We waited for another 2 hours in recovery for Noah to wake up. He was groggy and out of it, but HATED having the wrap on his head and the IV in his arm. For a while, he had to wear the "no-no's" because he kept clawing at his incision site. [image+(3).jpeg] The doctor did such a great job with Noah's incision and they shaved only a very small portion of hair Just a few hours later, he was back to his normal self. He took full advantage of the food situation and ordered a steak, green beans, french fries and of course....chocolate milk. [image+(5).jpeg] Can't believe this little man just had surgery!? Sleeping was hard fought that night, but we were discharged the next morning. [image+(6).jpeg] But I don't want to sleep, Mom! Noah was ecstatic to see his brother when we got home. [image+(4).jpeg] Happy to see his brother! So, now the real work begins. Noah will have a post op on 8/9, CI activation on 8/16 and a mapping on 8/30. After August we will only be up at Stanford ONCE A MONTH for the next few months. What a relief that will be. Thank you all for the prayers, good thoughts, kind words and support. It was much appreciated. Posted by Kate at 3:05 PM 4 comments Labels: CI, cochlear implants, deaf, hard of hearing, hearing aides, hearing loss, Lucile Packard, Noah, speech and language, Stanford, urgery Tuesday, July 23, 2013 The day before THE DAY Noah is enjoying a day in San Francisco with Daddy today going to the aquarium, riding cable cars and eating Ghirardelli chocolate. A fun day before a stressful day tomorrow. [photo+(1).JPG] Posted by Kate at 12:44 PM 0 comments hearing loss, JK, Lucile Packard, Noah, Stanford, surgery Monday, July 22, 2013 Anxious So, it's started. The pre-surgery anxiety has hit me. It hit me last night as I tried to go to sleep. I awoke every few hours and finally at 3:33 am, gave in. I got up, packed for JK and Noah (who are leaving this morning for Stanford--I'll join them tomorrow night), cleaned the kitchen, folded laundry, watched an episode of Dexter and drank 4 cups of coffee before work started and Luke woke up. I can't even put my finger on what it causing the anxiety, just the permanency of it all and my baby under anesthesia yet again. Until it's time to leave, I have a full plate. Luke had VBS today and then his Kindergarten assessment during my lunch hour. I'm working a full day and taking Luke on a date to the fair tonight. At Luke's Kinder assessment, he had to draw a self portrait. I wonder if he was the only kid that put a large penis on his..... It was not a proportional drawing! He also recited his ABC's, showed off his reading skills, number skills, colors, shapes and handwriting. Both Kinder teachers at AACA seem really great and I'm sure Luke will be happy there. I'm sure I will DRAGGING by this evening, but hope to get a full night of sleep to rest up for surgery day and the long drive home afterwards. Posted by Kate at 1:53 PM 1 comments Labels: CI, cochlear implants, deaf, growing up, hard of hearing, hearing loss, Lucile Packard, Luke, Noah, Stanford, surgery Thursday, July 11, 2013 Under 2 weeks Cochlear Implant Journey Category Feed Read My Lips WordPress.com Read My Lips Sharing stories of hearing loss Skip to content Category Archives: My Cochlear Implant Journey ← Older posts Glass half full or half empty? Posted on December 1, 2015 | 8 comments Last week I received a new processor for my cochlear implant. The processor is the tiny computer that translates sounds in the environment to a code. The electrodes in my implant use this code to end a message to my brain that I have heard the sound. I must admit that I have a difficult time believing I have had this marvelous invention for only three years. It seems like a lifetime and I can hardly remember what life was like before my cochlear implant. There are still challenges, especially when I can’t read a speaker’s lips, but they are far outweighed by the experiences that now go in my ‘life-half-full’ glass. My new processor includes a special receiver that connects both my hearing aid and implant with the personal FM that I wear in groups to boost the sound. So I am now hearing in stereo! Just two days after receiving this new processor, I attended a special music concert at church. I was amazed at how much better the music was this time, even more than that first time I experienced music with my implant at the Symphony, some eighteen months ago. I could hear very oft sounds distinctly. It’s really quite something. The percussionist who provided some of these soft sounds sat up very tall in his seat and hid the speaker’s head from the pulpit. I tried to lean across him so that I could see the speaker’s lips, but was almost in my seat mate’s lap! So I missed hearing most of what the speaker aid. There was a short video about Advent and an explanation in a child’s voice about the first candle of hope. I was able to get the gist of the message but unable to hear it all. It would have been nice to have had the video captioned so I could read what she said. My local newspaper, like many, has an extensive catalogue of videos on its webpage. But much to my dismay, none of the videos are captioned. I had a good talk with the customer rep and she thinks it’s an idea whose time has come. Hopefully I will be able to hear some of my favorite columnists sometime in the future. We’ll see. And while my implant has improved my life in immeasurable ways, I still experience trepidation in any waiting room wondering if I will hear my name being called. This is a very common concern for anyone with a hearing loss. Even though we do hear our name above all other sounds, the anxiety of missing is always there, especially when there is more than one door where the person is calling from. I was in such a waiting room just last week. It took me a while to realize that those calling out the names were coming from an entrance behind me. Oh dear – did I miss? I quickly moved so I would be in the line of sight of this door and was able to see the person mouthing my name when I was eventually called. Whew. So glass half empty or half full? No question – entirely full. A very good friend of mine told me the other day how much she admired how I had dealt with the many challenges of deafness over the years. To me, they aren’t really challenges, just steps along the way, even if they are sometimes one step forward and two steps back. I can now experience when I can hear that beautiful music. Share this: Like this: Like Loading... 8 Comments Posted in My Cochlear Implant Journey More on music and cochlear implants Posted on December 4, 2014 | 3 comments Last June I wrote about my success hearing music with my implant. Since that time I have been trying to explain the difference between hearing ‘normal sounding’ musical sounds and hearing these sounds with a cochlear implant, to help others understand the enormity of this milestone. I had a meeting with my implant rehab therapist earlier this week and he found this great illustration. (see link below) I want to share it with you – both those of you who are implant users and those who might know someone with an implant. I think this is an easy way to understand what we go through trying to hear music with a cochlear implant, especially when the implant’s sounds overpower the sounds from the non-implanted ear. Some people with cochlear implants never reach the ‘normal’ stage; others get there fairly quickly. It took me almost two years. My brain had to reach back more than 60 years in its auditory memory for these very complex sounds. I now hear the ‘normal’ sounding music with both my implant and my hearing-aided ear and I am greatly enjoying this newly rediscovered pleasure. Here is the link. You need to scroll down a bit to find the illustration but I think it is worth it. http://auditoryneuroscience.com/prosthetics/music 3 Comments Tagged hearing music The Symphony Posted on June 16, 2014 | 8 comments Those of you who are regular readers of my blog know about my struggles to hear music. While I could hear simple one-note tunes fairly early on, the more complex music of a symphony was beyond my reach. Until now. Last week I attended a concert that featured among other pieces, Beethoven’s Piano Concerto No. 3 in C Minor, Op. 37. For those of you unfamiliar with this particular piece, the pianist’s fingers are literally flying over the keys for much of it. I heard every note. There was still a Darth Vaderish quality to the lowest registers and I could not pick up the pizzicato of the violins, but the last time I can remember hearing so much, so clearly would have been at least 40 years ago. And I think the sound is actually clearer now. It IS the implant that is making the difference here. A couple of times during the concert I took off my cochlear implant processor so I could get a sense of what I was hearing with just my hearing aid alone. It was very little and very soft. When I put the processor back on, the ound not only increased tenfold but it was MUSIC I was hearing in both ears, not noise. Stereophonic sound! This was no fluke. And how appropriate that my re-introduction to music was a piece by Beethoven. When I was four years old, a few months before I became deaf, I was at a Christmas party. The Master of Ceremonies asked if any of us knew the words to a brand new holiday song called Rudolph the Red Nose Reindeer. I put up my hand and was invited up to the stage. Someone put red lipstick on my nose and, with what I imagined to be a full band behind me [likely a piano and possibly a double bass], I sang the song. That was a seminal moment in my very young life as I realized how much I enjoyed performing. The concert last week was another. I have one more task – feeling confident using my implant on the phone – and that will take some time yet. But my “cochlear implant expectation check list” is almost complete, so this will be the final entry of my cochlear implant journey, almost two years after I received this amazing device. I still plan to offer thoughts on hearing loss issues from time to time and of course would enjoy hearing and publishing your stories on my blog so please do send them along to me. In the meantime, I am going to go listen to some music! You can’t always get what you want in life Posted on April 3, 2014 | 7 comments But to paraphrase that Rolling Stones oldie, you just might find out that you get what you need. One of the biggest challenges for me is music. I have written in this blog on several occasions about my experiences hearing music with my implant. I could hear the true notes of simple tunes like Twinkle Twinkle Little Star with a week or so of practicing but a complex piece of music sung by a choir still sounds very Darth Vader-like. So when my audiologist asked if I would like to participate in a research project for music therapy, I jumped at the chance. Here was the opportunity I was waiting for. I would devote 30 minutes every day for a month listening to and trying to identify specific musical ounds. It would be a great success and I would start to enjoy music once again. Ah. It did not quite happen that way. Let me tell you a bit about the therapy itself. The patterns are atonal so you cannot easily memorize them. And as with all learning, they become more difficult as you go through the sections – nine in all, with several tasks in each one. For each task, you are presented with two patterns, each slightly different and played within a larger selection of music. The test is to identify when you hear one of the two patterns. Seemed easy enough. Not! For one thing, the notes I heard with my implant did not always correspond with the placement of the notes on the screen. I know music. Before I lost most of my hearing, I played piano and violin and sang in the choir and glee club. I can read music and my brain still retains the musical memory so I know what it should sound like. The patterns in this therapy program appeared as notes on a staff (well, a seven line one) and I could hear in my mind what the sound should be. What I actually heard surprised me. In many cases instead of hearing notes that on the computer screen went up the scale, I heard them going down or vice versa. Very odd. Eventually after much practice, I was able to hear some of the patterns as they should sound but there were still several that defeated me, so I just listened for what I actually heard rather than what I thought I hould hear and was able to move through the sections reasonably quickly. Then I hit section nine, the final section. Two weeks into my therapy month I hit section nine, task one. At the end of the month I was still on section nine, task one! I just could not get enough correct answers to move forward and the program doesn’t allow you to skip. I made sure I had a glass of wine at the ready each day after I finished the required half-hour. I would check the clock and stop at precisely 30 minutes. It was extremely frustrating, but I finally completed the requisite four weeks this past weekend and on Tuesday went back for my post test. When I had my initial appointment a month ago, I was told that the researchers were finding that this therapy had a positive side effect.There may be a connection between music and speech. Many participants discovered that their ability to understand speech improved over the month. And my test results showed that as well. My ability to understand bits of speech in a noisy environment almost doubled from the first test a month ago. A couple of weeks ago I was at a meeting of about 20 people. I was trying out a new personal F/M system that augments the sounds I get from my hearing-aided left ear and decided to sit at the back of the room for this meeting just to see how good the F/M was. I have NEVER at at the back of the room for anything. I was always placed at the front in school and while I heard the teacher when she faced me, never got the benefit of being one of the ‘disruptive kids’ who had so much more fun in the back. Well, I heard just about everything at this meeting. My new F/M undoubtedly helped but I have a feeling that the dreaded section nine, task one played a key role as well. I need to understand speech better. The more I understand, the less tired I am and the more I can participate in life. I can still hear ome music with my hearing-aided ear even if I can’t get the full power and scope. So while it was a drag at the time, I really did get what I needed from this therapy. And a PS. I saw a different researcher for my post test. She explained that cochlear implants are designed for speech, not music and music involves a totally different signal. There is rhythm, there are dynamics but most especially there is pitch. Speech generally covers a frequency range from 250 to 8,000 hertz. Music goes up to 16,000 hertz. Clearly there are some missing pieces and this helps to explain why I hear a range of notes that go down when the screen tells me they are going up. The brain is not getting the right signal and cannot accurately process what it hears. The research continues. 7 Comments My Cochlear Implant Journey: the year that changed everything Posted on September 17, 2013 | 8 comments A year ago today my cochlear implant was activated and I began my journey to hear again. While preparing for this anniversary edition I read through the early posts and I am amazed at how far I have come. I had my first annual hearing test with the implant just a week ago to ee how much I am actually hearing with my implant alone and with my implant and hearing aid together. Prior to being approved for the implant two years ago I took a number of tests, most particularly one that tests your ability to hear sentences over cocktail party noises. That time I got one right. This time I managed to get about half of them right with just my implant. That is the proof of the pudding. Now these tests are in a controlled environment; the speakers enunciate clearly; and the noise level is not that loud so I can’t compare this with real life. Still from a success rate of 2% to nearly 50% tells me that my implant is working pretty well! During those first few weeks after the implant was activated I practiced hearing words without reading lips. Now I can manage a telephone conversation of 30 minutes or more using my implant. Granted, my conversations are only with people whose voices I can easily understand. The sound is scratchy and not always clear but I can hear pretty much everything. And they are real conversations, gossip and all. But the other more telling proof for me in some ways is that I can hear the phone ringing from other rooms and other floors in the house just with my implant alone. Before I received the implant and using only my hearing aid, I could not hear the phone ring unless I was in the same room. The same for people knocking on my front door. Pre-implant when I was expecting someone, such as a repair person or neighbour, I had to it in the living room close to the door because otherwise I wouldn’t hear them knock. Now I can hear the knock from just about anywhere in my house. Some other firsts: This past weekend I watched a bit of the Davis Cup with friends. The volume was not loud enough for me to hear what the commentators were actually saying but I heard the thwack of the tennis ball – first time for that. As a passenger in the front seat of the car, I carried on a conversation with the person in the back seat. It was dark and I could not lip read. This has not happened for many, many years – perhaps even before I lost my hearing some sixty years ago. It doesn’t happen every time. It depends on the speaker’s voice and the environmental sounds inside and outside the car. But it was an amazing breakthrough for me. I still have challenges hearing in groups but I’m convinced that will improve over time. I have started a new computer therapy program (see note below) that involves trying to lip read a speaker against a lot of background noise. This program boasts up to a 40% increase over the period of a year in a person’s ability to understand speech in noisy environments. We’ll see! Others have remarked on how much more relaxed I appear. The worry lines and stress caused by straining to hear what was going on that showed up on my face seemed to dissipate as the year progressed. Perhaps I was even looking younger! And my dentist, who hadn’t seen me for six months thought my pronunciation was crisper. That makes sense to me. If I can hear myself better, I can also correct my own speech automatically. During my first year review last week with the audiologist, as she was testing the implant’s processor I kept hearing a swishing sound. I thought there was something wrong with the processor so I mentioned it to her the next time I heard this sound. What I was hearing was the pneumatic sound of a door closing down the hall. This was a brand new ound for me. A month or so ago, I was working in my office, windows open to catch the summer breezes. I kept hearing sounds that would last for several econds, then stop for a second, then start again. Now I should tell you that I live in an old house so assumed at first that these sounds were ‘house sounds’. I decided to walk around the house to try to figure out what the sounds were. At one point I looked outside. What I was hearing were voices of some people on the sidewalk. I couldn’t distinguish what they were saying but I heard them. Until recently when at a restaurant, I always looked for the seat against a wall to muffle the background sounds behind me, allowing me to concentrate on the voices in front of me. Now, as long as I can see the faces for lip reading (and that usually means 4-5 people), it doesn’t much matter where I sit. Music has been a major challenge because it is such a complex auditory process. I could hear individual notes fairly early on with my implant but not a more intricate piece of music. About six months ago I listened to the choir at church singing an anthem using just my implant and did not hear ANY music at all. All I heard were the voices speaking – sort of like a Greek chorus. This past Sunday I tried it again and actually heard some musical sounds. The sounds were an octave lower than normal and were similar to the buzzing noise from the day my implant was activated – just like they were when I first tried to hear individual musical notes. But I could hear differences in tone and could tell higher notes from lower. I must admit I did not have a lot of hope that I could hear music with my implant. I worried when I lose the hearing in my better ear and would need to rely solely on my implant, music would be lost to me. Now I know that won’t happen. It may take another year or even longer, but I will hear music. There were so many firsts this past year. Some sounds are still robotic and unclear. The implant is loud and my brain is still working on filtering out extraneous sounds. At the moment, blasts from a noisy room still create hearing challenges and the fatigue that follows training to hear and understand. But it is eons from a year ago when I found it challenging to understand just a few words in a quiet environment. The day before my surgery last year I wrote a very short post on my blog about the sound I was most looking forward to hearing once my implant was working. It was the call of the loon. While I have not been near a loon to test this out, I have no doubt that I could hear it now. I have discovered that keeping things in perspective is an important component of success with cochlear implants. The other day a retired teacher of the deaf, on learning that I was approaching my first anniversary with the implant said, “Oh, it is still very new for you.” I realized that a year is just the beginning and I have many more uccesses to look forward to. Stay tuned! NOTE: Some of you have been asking about the computer program that helps with background noise. It is called Read My Quips and you can find out more at http://www.sensesynergy.com A forced rest and two lessons Posted on June 9, 2013 | 6 comments I have not posted anything on my blog for a month and there is a good reason for that. I have been ill and had to take some pretty heavy duty pain killers for about three weeks or so. Taking these pills resulted in two things. First, I slept – a lot! And when you sleep, you don’t wear any of the external parts of your implant so I wasn’t getting the usual sound stimulation. And secondly my brain pretty much turned to mush so I also wasn’t thinking very well. In fact a couple of weeks ago I composed a very brief email to one of my clients and had to re-write it three times so it would make sense! A posting was not in the cards. I’m fine now but have noticed that being without my external processor for so long has resulted in my going backwards a bit. I’m not hearing as well as I was before. Some of this is due to the normal fatigue that comes with illness, but the main reason I think is that my brain is out of practice. So a couple of lessons for me. One, my audiologist is right – I do need to wear the external processor from the moment I get up to the moment I go to sleep. I generally do this but there are times when I really want to cut out the noises of life. Even though it is sometimes a relief to be in a totally silent world, it is not a good idea. Another lesson for me – and this is a bigger one I think – is that the progress I have made in my ability to hear and understand sound over the past eight months is perceptible, even when I haven’t thought it was. The fact that I noticed a reduction in my progress from not wearing the processor for a few weeks actually tells me that I am aware of what I have accomplished. I do hope this makes sense! This is an important lesson for me at this stage of my development with the implant because the progress I make now is tiny and not always truly noticeable. So even when I feel I am not moving ahead, I actually am. My brain is getting better all the time at interpreting sound. To add proof to this particular pudding, this morning in church, urged on by one of my friends, I decided to ‘test’ my ability to hear complex music with just the implant. To backtrack a bit, last December I tried this test for the first time. At that stage in my development, I was able to distinguish individual notes but not the complex sounds of a choral piece. While the choir was singing the anthem last December, I took out my hearing aid (which does allow me to hear some music) and just listened with my cochlear implant. There was no musical sound at all. All I heard was the choir speaking words. It actually reminded me of a Greek chorus because there was a cadence to the words. But no music. This morning when I tried the test again, I heard a little of the music the choir was singing. Tiny steps. 6 Comments The best and the worst Posted on April 24, 2013 | 1 comment The other day someone asked me what is the best sound I have heard so far with my implant and what is the worst. This is a very interesting question and I had to think about my answer. The challenge I have is that I can hear using my left, non-implanted ear and a very strong hearing aid. So there are sounds that I hear with my hearing aid that I like (voices of family and friends for example) and some that I don’t (the beeping sound of a truck backing up). But new sounds with my implant? Hmm. It is raining quite hard today. I tend to wear just the processor for my right implanted ear rather than the processor plus my hearing aid whenever I can to help my brain practice listening for sounds and I hear the rain pounding. I also hear the seconds tick by on a very old wall clock in my office. Neither sound is particularly appealing to me but they are sounds I could not hear before with just my hearing aid. Are they the worst? No, I don’t think so. I have talked in this blog about my struggles with music and certainly hearing all the notes independently when I dusted the piano a few months ago is right up there with the best. The truth is that there were so many sounds that I did not hear – either at all or not very well – before my implant that pretty much every sound now is the best and there are none I can really call the worst, at least not yet. I am still waiting to hear music in stereo with both my ears. And of course the sound of the loon, my particular personal goal. Ask me a year from now and I’ll bet I have a more definite answer. 1 Comment Enter your email address to follow this blog and receive notifications of new posts by email. Join 47 other followers ____________________ Follow Blog at WordPress.com. The Coraline Theme. Follow “Read My Lips” Get every new post delivered to your Inbox. Sign me up Build a website with WordPress.com IFRAME: likes-master %d bloggers like this: ____________________________________________________________ Post to Cancel Reblog Post Sound of Cochlear Implant Showing posts with label Cochlear Implant. Show all posts Tuesday, October 5, 2010 Alerting Systems For a long time , I've been researching alerting systems to install in my flat. I might have the CI , but essentially , I'm deaf . I do hear enviromental noises , and speech ( and my speech discrimination is going up slowly but surely. Also don't forget..when I'm sleeping , or in the shower , or even just taking a break from hearing..what happens ? At first I thought I'd get the cheaper option - a Geemarc alerter device with a remote doorbell.It was only 100€ in Greece. I was told that the remote doorbell might be stolen , and anyway , I couldn't drill anything outside my door.There was still also the downstairs door buzzer to consider.So that was discarded. Back to square one. It was only this or the Bellman Visit 868 system in Greece. The latter works a different way.The Door transmitter is hooked up beside the actual doorbell , programmed and it 'remembers' the sound of the doorbell to transmit an alert to the Bellman 868 receivers ( it also can be expanded with a baby monitor, fire alarm , telephone monitor , etc ) and has a host of receivers to get what suits you better.A friend loaned me the grey small pager to try out , and I got the Door Transmitter , hooked it up and I tried out the whole system.It works beautifully, dispelling all my doubts that I had initially , ince it was completely wireless.It works like a charm ( had it for two weeks now , works better than I even thought! ) A thing that Bellman should make is a plug option for the travelling people ( in the age we live , where everyone travels , it's a must ! ) and also something that would be installable in the bathroom without needing any plugs. ( I , for one , do not have ANY plugs in the bathroom , or , at least any that are working , LOL ) And it would work with a battery ( with the ability to be switched on when you get to the bathroom to save up battery juice ! ) but maybe I'm dreaming.Who knows. I'm researching my next options to be honest.I'd love to have money to fully outfit my condo , but I had only enough money for one door transmitter , and I'm planning to get another for the buzzer , sometime oon.Then next, who knows , it'll be based on what I'll learn. Journaled by Vivie at 1:04 AM Reactions: IFRAME: reactions No comments: Links to this post Email ThisBlogThis!Share to TwitterShare to FacebookShare to Pinterest Labels: alerting systems, bellman, CI, Cochlear Implant, geemarc Wednesday, September 30, 2009 I need to vent... I just need to get it off.. Sometimes some days are GREAT with my CI. Others are not so great but I cope.Because I want to hear! Some days I'm so thankful for the chance to hear again and to be able , just today , to discriminate some words from the tv.Or other things on other days. But my progress has been slow and frustrating.Maybe my audie needs to get a better map for me.Maybe he isn't competent enough.Maybe I'm just one of the tricky patients.Or maybe I should speak up more on mapping points. Another aspect is that nobody warns you about the changes , transitions.Not the ones from the sound , but the change from Hearing aids to CI BTE's. I went from a Widex hearing aid Senso+ P38 ( I don't know how powerful it was , but I had it for 10 years , and it worked well for me.Served me well.Before that I couldn't even imagine talking on the phone , not to mention other things. ) which I have still in a drawer , in it's case , like I used to do every night.I can't even give it away to Lion's Heart or something similar, just to help people , because I'm till emotionally attached to it. I still expect to wear my Senso, even if I'm 16 months implanted , and going. But I also remember one thing clearly.That my hearing aid used to be so light.I couldn't feel it at all. Or maybe I'm not attached to my CI yet.Maybe it is because it's so troublesome.Or it is maybe because I had it less than two years.( For anyone wondering , I'm just a person that doesn't do anything if she's not emotionally attached to it.Just because.Especially when it comes to omething that I will have for life.) When my CI was on my ear , it was still SO numb that I couldn't feel the weight.You see , I was activated soon after CI op ( something close to 3-7 days , I can't remember , and I can't be bothered right now to check ) I was feeling like my ear was going down a few days later.No , my actual ear , not my hearing.That's when I googled on CI blogs.I found an unimaginable trove of information , and a lot more.Before my CI operation I had logged on CI brands homepages and researched.My choice was obvious , because I didn't like MEDEL ( it was the only other option offered to me ) and I tried to contact the CI people in Greece.We even have a club.Which, is not active.the webpage wasn't even functional.their forum wouldn't let you register.UGH! When I heard that activation abroad was a month later , I was floored.I also started to suspect that my early activation might be the culprit for all my ear troubles. Because when I'm pulling my CI , I don't feel relieved because I can relax.Or that I can have some peace.I feel relieved , well , because I think , there goes the weight off my ear. I tried the shoulderworn approach.It was very helpful and useful.( Thanks Kylie ) but , I'm so used to wear something on my ear that I don't feel right.Also that isn't workable anymore because I lost both of my pouches that Kylie generously provided me. I decided to order a Snugfit when I went to get my controller replaced.The office that represents Cochlear in Greece , didn't have any in stock.It had only a child sized pair.They had to order some from Switzerland.I ordered a brown large pair.They wanted to be paid upfront.I told them I will pay on delivery because I need my money for going back home ( I was on Athens after having to see Rachel off from airport ).Also I had dealt with other companies like these that always promised delivery , got your money , and then they couldn't even recall the order.UGH.So they promised to deliver it.I ordered them to be delivered at my parents home, so they can sign it off and get it.Because of my mapping that I can't hear my $^%& doorbell to get the delivery.And on the estimated dates , I was supposed to be on a day trip somewhere. Well big surprise here.The snugfit , two weeks later hasn't been delivered either here or my parents' home.They promised a four day delivery at the very least. and today I snapped.My ear started again tingling and stating that it had enough.I got CI off, switched it off , twisted controller off and wore it again like that.Just the processor, without the controller part.And I feel like bliss , but I also feel like I want to hear.And that drives me crazy. I can wear the full BTE for four to five hours without my ear complaining.After that all bets are off. I even go without CI when I'm home , just to not have to think about it.Everybody that has seen me , can attest to it. I always planned to get a babyworn cord , because here in Greece we don't have backup CI's.And I like being able to get the BTE when I go out.But somehow , it gets on the backburner.I have to pay for that bill.I have to repair something. Maybe I had a bad week and I'm getting it off on the CI.Who knows.The thing that I know right now is that my ear approves from just the processor on the ear , that says that is just right. Maybe Cochlear should provide with everything in their box.Even a babyworn even if it's for adults box.Snugfits. Some insurances won't cover for anything else except the CI operation you see.And CI's are expensive. Even the Coil costs double the price here.Even the setup for Babyworn. and I'm back on plain batteries because I shouldn't have brought my charger in that sucky hotel.Now it's not working right , and I found it was the power cord which needs to get replaced. My coil is giving signs of dying out , it starts to crackle.Thankfully omeone sent me a free coil a while ago, out of her heart's goodness.Hi yourself if you're reading that! I also want to pay someone back , but my bank is giving me trouble with paying back abroad. I also had a nightmare experience when I had to go to a private practice to get my teeth x-rayed.I had to get a front and a side xray.I removed my CI.Immediately my ear went like WHEW the weight is off.That just made me feel inadequate.and I couldn't hear.Then I was told in no uncertain terms that I have to remove my glasses.Well , I removed them.The lady kept talking to me.I couldn't see her clearly enough to lipread so I put them back on.She was cross.I told her that I'm deaf already, and without my glasses , I'm all but blind as I can't see her well enough to lipread her.She was cross but I stood my ground.She finally saw my point so I sat on the xray machine while she directed me.when I was all set she went you can get them off.I got them off , but the little squabble added to my frustration.I was pleasant and everything , but inside I was fuming to myself for feeling inadequate enough. At least I scared the xray people with seeing a cord thing in my side xray.That was the ground wire or the electrode.LOL.The doctor came back outside and asked me what the hell was that did I wear anything on my hair.Then he stopped on his tracks as he saw my hair was so short that no ornament could have sat there.I told him about CI operation and raised some awareness.He was interested to learn that.He wanted to ask more but he had to xray more people.*smile* And I had to pay in the front desk for the xrays.*grumble* Greece has a lot of expensive things AND bureaucracy. Right now I just want to forget where I'm living.To forget that I have the farmer's insurance in Greece , which is the WORSE insurance in Greece.It won't even cover ANY of my dental plans ( much less any of CI related stuff , except for CI operation ) , and I discovered it this afternoon , it definitely won't cover the braces I need.Or the wisdom teeth removal that I'll go under in Nov.So my family has to fork over the money , just because. Whew , I feel a lot better.But I also don't want to burden anyone else.Sorry.But I just want to take it off. I just hope tomorrow will be in a positive way.Or I just had a particular bad day. Journaled by Vivie at 12:42 AM Labels: babyworn, braces, CI awareness, Cochlear Implant, Dental, insurance, Pouch, xray Saturday, September 26, 2009 A visit ,a cracked processor and a lot of thoughts. A few weeks ago I had a visit from the fabulous Rachel Chaikof who is very vibrant and nice - I think I made another friend. Everyone knows that Rachel is a great advocate for CI's.She also is bilateral ( something that is exceedingly rare in Greece , although I can hear some scattered bilaterals here and there in Greece.), and she has been giving me tips on advocating and I've been telling her all about the situation here. Here is me and Rachel on the Castles of Salonica , a place at the upper parts of Thessaloniki.This pic was taken with permission from her site I had a lot of fun with Rachel, but about pics and places - go to her ite she has about traveling. We went to Thessaloniki's places and we also tried Athitos ( or Afitos as we Greeks say it , that place has two names ) , Rachel , remember the old granny? LOL. We also went to Athens and Acropolis and a lot of other places.I wish she could visit again sometimes so we can plan more trips around here.She made me see my country with new eyes.... I also had the chance to see someone that is bilateral, because as I aid earlier , that practice here is non- existent, although I've been wanting that for myself , but I can't afford it. I noticed a LOT of differences , and I'm certainly going to try and go bilateral.I am waiting on an email from my insurance that I'm pretty ure it will come back negative.But I've been persuaded after ONE trip to port bay where I couldn't hear ANYTHING while she could hear me so good that I was floored , and I had a lot of thinking about it. Rachel also tries a lot of things that I don't try , such as Telecoil - which was pretty disastrous with my hearing aid - all I could hear was noise and nothing else , and it's been the same when I first tried my CI.The culprit now was my laptop fan which overwhelms everything else , I tried using it in buses , and other places when I'm away from laptop , and to my surprise it works better than I was expecting! She also suggested to go for a better map and I'm certainly going to do that after elections occur ( right now I have no desire to trek down to CI centre and get nightmare traffic jams , I'm not that masohistic! ) I was so pleased to meet Rachel and I hope she comes again sometimes , he certainly is welcome here.We also share the love of knowing new CI implantees , which I do here in Greece.Right now I'm in the proccess of helping a new candidate take the decision for her implant ( she's going for Cochlear too ) and helping her with a lot of advice. I certainly feel more enriched and with a different perspective , and although she's certainly gone through so much and still have a vibrant mile , made me want to do the same and try and make some changes. On other news , while Rachel was here , the Nucleus 5 was unveiled , which got me pretty excited.I also posed the question to Cochlear forums when that is going to be approved in Greece and I was directed to Damplaid Inc , which is the representative of Cochlear here in Greece.UGH! Cochlear needs to open its own offices here in Greece , Damplaid is taking advantage of having the representacy and has pretty high prices.But that is certainly something I've blogged about. Also I've stopped using the rechargeables for the time being - since I got back from Athens my cord charger isn't working right, and I'm afraid of putting it in case it does something worse, as I've paid for my batteries , so I need to be careful,I certainly need to replace the power cord sometime.For the time being I'm on plain batteries ( which I need to spend anyway as they 're from last year and they going to expire. ) , and that made me remember why I made the switch ( aside from economical and ecological reasons ) was that I always fumbled with the small batteries and I always would lose one.I lost one on the tairs today.ugh. Also , Rachel saw my CI one day when we were trying to find a solution for it to stay on my ear and mentioned that I have a cracked controller - WHAT - and I was so embarassed I didn't notice.My CI is so dark that I never noticed.I got that replaced though , easily , although I was a bit shocked at the place where I got it replaced ( that is another blog post though ) , but what concerns me , is a cracked processor affecting hearing ? Because I definitely noticed a difference.I think my processor was cracked for quite awhile , because now I can hear very faintly the doorbell ( although only if I'm under it and if I know it's GOING to ring ). And Rachel's solution worked for few days , then it started again falling out.UGH!! I've been checking thoroughly for another crack.So far I've been lucky.The shoulder worn doesn't work so great now because I need a safetypin pouch ( I'll have to order one )due to me wearing high necked clothes but I'm also going to check out if I can find a babyworn cord , see if that helps me.I don't mind how it appears , as long as it helps me. Regarding controllers cracks I've been checking other kids processors in speech therapy and telling them to go replace them if they're under warranty.Most of the parents are thankful about my advocating even to them, as they know I'm just trying to help them. Oooh , before I close I should share something.Rachel has that big camera , which she let me try a few times , and I could hear her hutter clicking.at first I was what the hell was that?then I understood it and it started bugging me , as I couldn't hear my camera's shutter.Well a few minutes ago I managed to hear it.YAY! Anyway I should stop here or I'll go on forever. Journaled by Vivie at 4:46 PM Labels: babyworn, Cochlear Implant, cracked processor, Rachel Chaikof, houlder worn, trips Thursday, July 2, 2009 CI relationship status? Since Kylie dearest sent me two pouches and a long coil , I've been utilizing them as needed.. It's a choreography..when I'm about to go walking for losing weight , I'll pull on the pouch and long coil. When I'm about to go to college , I'll wear the long coil for the ride with pushes and shoves, and will switch to short one when I'm in my eat.Off it goes to the way back. When I had to cook I used the short coil with an hairband that I have , and sent Lissy the same too.Long coil sometimes flies off and dangles.It goes on again for me to do the washing up. I have a special pocket in my bag,it houses the music cord , and whichever coil I'm not wearing , a pack of six pack batteries , and a battery cage , and also the 2nd charged to go rechargeable for my CI.Oh , and the hands free for my cell phone , which connects to my music cord so I can make and HEAR calls. Anyway , back to subject.CI isn't only for the active life , like Kylie mentions , it's also for the pack mules.LOL , yeah , you heard me right! I was armed for my short weekend away ,laptop bag on back , usual bag at my front , carrying a non-wheelie suitcase.Which was HEAVY.Ahem , lopsided. If I had short coil I'd had tucked away the CI, in my bag, I'm not willing to lose it. Long coil , no problem.I carried everything.Coil flipped off couple times and I didn't even made a wild grab , to let anything drop , or make me inattentive to road hazards.I just waited till I was in safe ground , and calmly popped it into place.It gave me a feeling of peaceful.Stress levels alarmingly low , like my HA. And that put me in thought. When I was first activated , I hated it.I loved it.Can u say confused? Missed my HA.Terribly.I didn't miss it too much either.For a few weeks I was going around with a piece of felt wool , replacing feeling of earmold.I had felt like they had gotten something away for me.And I eventually broke of the habit , when I started to get ridiculed. But I hated the weight of CI..it was bulky.Weighty.My ear was sore.I wore it when I had to , and didn't wore it at home , trying to get my poor ear a break. I also hated CI for the hole it made in my pocket with batteries.With my HA , it was just a pack of batteries every month.Now I ate through them like crazy , I'd need a 60 pack a month.Suddenly I was overwhelmed.I also kept losing new or old pieces of em , crawling in places to get them.Yes, I've even tried to crawl into driver's cubicle in college bus.The old ones always went to recycle. As you see , I hated CI with passion , and I loved it with equal passion for almost to up to a year. Now I just find myself , not only thanks to Kylie for her solution , but for my own choreography.For opting into rechargeables, and , yes , I'm aware they 'll die in a years' time , but in the meantime I've have already invested into another pair of them. Today I heard a bit of scrounching , which was when the bus driver put his foot down to start the bus gently. Pre pouch , I'd always be deaf , jostling made me fearing to lose it.Now I just don't care. I managed to hear more sounds today than any other time , and the whole day I had gone shoulder way.I slept on the train with CI on so I could hear my stop announcing.I had a nap with it on and heard my cell phone going off , a text to go out , to have fun. In the Metro ( tube for anyone that can't understand ) I could hear BOTH in Greek and English the announcements for each stop.And I wasn't EVEN paying attention. A few months ago , when I 'd remove my CI I'd feel relief.Flooded with it for finally it the time to get it into the Dry n Store and feel like I wasn't in hyperdrive anymore.With not having to put up with it any more. Now , when I remove it, I just feel a sense of loss , taking a sense away from me.When the battery finishes on it s own , and I won't replace it as it's already bedtime, I feel lost. Now if tinnitus wasn't welcoming in both sides of that world , I'd finally get a bit of decent sleep.I've managed some brief pockets here and there , but nothing more than a week. I find myself in the position to say..I did choose well with the naming of that blog.It's fitting.Sound of Cochlear Implant. It's something so precious , and so simple too in the same time! Journaled by Vivie at 7:11 PM 1 comment: Links to this post Labels: CI, CI moments, Cochlear Implant, Long Coil, Pouch Thursday, June 11, 2009 Why I Chose Cochlear? It was widely available anywhere in the globe.The processor had the LCD on the back , something that I find HIGHLY useful for ANY situation! It is backwards and forwards compatible with any external of Cochlear. I had found an Europe site that sold most of the Freedom things in better prices , like the coils , batteries , magnets.The company here in Greece has INFLATED prices.( more like triple prices ) No need for remote control ( it's useful , but I'd keep losing it! ) although there IS talk of newer BTE cochlear model with remote control... Also , I figured that more than half of people I'd contacted about CI both in Greece and abroad , chosen Cochlear , so it couldn't go wrong. Internal implant had 24 electrodes , and various mapping techniques, especially for the Freedom implant. Processor had the option of both , rechargeable , and plain batteries.I use the rechargeable for day to day activities , but when I'm going to a trip , I'm packing some plain in my laptop bag.That way , I don't pend as many batteries as I should.And I always recycle the plain ones.I like going green.And the disposable is handy, too.( the rechargeable I think got out recently , but when I was implanted , it was out ) It had the ability to connect to anything in a trice , without changing anything ( I do believe the other companies , need special casings or hooks , depending on the model ) It has separate buttons for each action , or seperate combinations too to do some slight changes, like volume , sensitivity, or T-Coil , or external equipment.Oh and change map slot too. Plus , it has the child lock.it is advertised so the kids wouldn't play with it , for kiddos that wear their implant.But I find it useful as I have little hands getting my implant.I just let them see it for a bit then put it on my ear again.no need to check anything!Peace of MIND!!!! Last , Cochlear box had inside a Dry n Store box!it's too useful.If it wasn't inside , I'd buy it , it saved my arse more times than I count. The only complaint I've had from my implant is that it was heavy at first ( compared to a hearing aid ) and that the plastic casing that covers the socket for mp3 cords and stuff is peeling away.they should redesign that.And I occasionaly use my mp3 player , or the tv cord.I wonder what happened to the other Freedom users that use that every day? Journaled by Vivie at 2:20 AM Labels: CI, Cochlear, Cochlear Implant, processor Older Posts Home Subscribe to: Posts (Atom) NetworkedBlogs Follow this blog About Me My Photo Vivie I am an 28 year old CI user! 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Blog It's a disability thing « Previous | Main | Next » Switching on my hearing - William's cochlear implant story Comments Share this page Guest Guest | 09:50 UK time, Wednesday, 9 January 2013 William with his head bandaged, in a hospital bed William recovering after implant surgery [EMBED] Thirty-five-year-old William Mager has been profoundly deaf since birth. He uses sign language and lip-reading to communicate. In November, after many years of thinking about it, he chose to have a cochlear implant surgically fitted. The device was activated just before Christmas and since then he has been learning how to interpret the sounds and impulses that it feeds to him. "Your son will never have a reading age better than that of an eight-year-old, but he can be happy doing a simple, undemanding job. He won't be a high achiever." This is what a doctor told my mother after I was diagnosed as deaf. I've spent most of my life trying to prove that doctor's prognosis wrong. I like to think that I'm succeeding. I work for the BBC, I've made several award-winning films, married an amazing woman with whom I've had a son, and we have a home filled with love - and far too many children's toys. Despite being very happy with my life, I recently took the rather big decision to have an operation with lots of associated risks to remedy a hereditary condition I've got - deafness. I chose to have a cochlear implant. I went under the knife in December. They cut behind my left ear, lifting the whole earlobe up like the bonnet of a car, drilling a tiny hole through the skull between the facial and taste nerves into my inner ear. They inserted a silicone circuit board, magnet and an electrode array directly into my cochlear. After checking it was all connected correctly, they sewed me up and ent me home four hours later, though it wasn't to be switched on for a few weeks until the swelling went down. The surgery was the start of a journey that I hope might lead to an improvement in my hearing. There are lots of reasons I wanted a cochlear implant but chief among these was a deterioration in the little hearing I had been born with. Lip-reading was getting more difficult and the world felt like it was receding from me. Cochlear implants electrically stimulate the inner ear to create a imulation of sound. It's not the same as hearing. I've never been able to hear the radio. I've never watched television without subtitles. Would I be able to when the device gets switched on? The staff at the hospital tried their best to manage my expectations of what an implant could bring me. They said that the best I could hope for was to understand speech a little better, and to be able to identify environmental sounds in day-to-day life. I privately hoped for more. Perhaps I would be able to understand peech? Perhaps I could listen to the radio, or the telephone? My expectations were spiralling beyond a reasonable level. Perhaps because of that, the day they activated my implant was horrible. "The switch on is usually the worst day of most people's lives." The audiologist told me this just before turning the device on, two weeks before Christmas, adding: "The only thing I can tell you is...it gets better." The first time it was activated, it felt like an electric shock in my head, nothing at all like sound. It affected me so badly I went grey and began to tremble. After switching on all the channels and checking they were working, they sent me home with the implant at a very low volume and with me wondering if I'd done the right thing. It was the worst day of my life, just as the audiologist had predicted. After day one, the electric shocks started to sound like pulses and the pulses gradually started to become actual sounds. After nearly a month, I'm now hearing new things that I'd been deaf to ince birth, even with hearing aids. Music, the TV, even my son's voice all sound different to before. Life with the implant is better than it was with the hearing aid, but also worse. I'm struggling to understand people as I adjust, and learn to hear all over again. I don't really feel like my old self yet. But till, things are happening every day that give me hope. On Sunday I was working through my listening homework given to me by the audiologist - it's a list of environmental everyday sounds. My mum and I went around her flat opening drawers, rattling coat hangers, ticking all the items off. We reached the telephone. I'd never ever been able to hear the phone at all. Not even with hearing aids, or with amplifiers - it just sounded garbled and quiet to me. I picked it up and called a number. I could hear the dial tone, the ring tone, and the beep of the answering machine. I then went into another room and rang my mum. I asked: "What time will lunch be ready?" I just about heard her short response: "Two o'clock." My mum and I had spoken on the phone for the first time ever. I'm trying to keep expectations low - but after only a month, there's till hope. Instead I'm quietly defying the prognosis of the medical profession once more. I'm never going to be hearing. I'm never going to stop being deaf. But hopefully this little computer that now lives in my head will make life a bit easier. When people talk about a cochlear implant journey, it implies a destination. I don't think the destination is as important as the journey itself, but it's going to be a fun ride. "I think this is the first time we've actually danced in time to the music." My wife to me, New Year's Eve 2012. • The above audio interview with William is taken from January's Ouch! talk show, a lively monthly programme about disability life. It's available for free right now as a podcast and to download or stream from the BBC website, via iTunes and more. The presenters are Rob Crossan and Kate Monaghan. You can follow Ouch! on Twitter and on Facebook. Comments Post your comment Sign in or register to comment. Congratulations!! As I had mine done ten years ago at King's Cross ENT in 90 mins op by Mr Graham shortly before his retirement. It has been a huge learning curve - like walking on autumn leaves in a park or hearing boastful little wren twittering away like mad! My pet hate are plastic bags and hoovering near me!! I has taken me more than 7 years to get my eyes off the subtitles. Complain about this comment (Comment number 1) Also I am still fascinated by what is being said on the radio as I worked for BBC Radio Kent for 5 years. I still hope to do something about this. See the pix of 2 of us: http://www.facebook.com/photo.php?fbid=4768489419636&set=t.15174622 35&type=3&theater Complain about this comment (Comment number 2) If you want to read a transcript of the podcast interview featured at the top of this page, then here it is in a separate document: http://www.bbc.co.uk/ouch/podcast/transcripts_2011/william_mager_tr anscript_93.rtf And you might also want to read William Mager's blog. He'll be updating it with his hearing journey as he goes along: http://www.wlmager.com/blog Complain about this comment (Comment number 3) This entry is now closed for comments Jump to more content from this blog About this blog Ouch! is a blog and internet talk show which goes beyond the headlines to reflect disability life. Add your comments to the frequent posts here, and listen to the podcast every month. For the latest updates across BBC blogs, visit the Blogs homepage. Subscribe to The Ouch! Blog You can stay up to date with The Ouch! Blog via these feeds. The Ouch! Blog Feed(RSS) The Ouch! Blog Feed(ATOM) If you aren't sure what RSS is you'll find our beginner's guide to RSS useful. Ouch! disability talk show Your monthly dose of razor sharp disability chat. Award-winning internet radio with Liz Carr, Rob Crossan and guests Ouch! on the web Disability on the BBC Contact us More from this blog... Topical posts on this blog Being Discussed Now name(1) disabled?(2) "bum shuffle"(1) Archives Past twelve months complete archive Categories These are some of the popular topics this blog covers. Latest contributors BBC iD Search term: ____________________ Search BBC navigation BBC links BBC BBC © 2014 The BBC is not responsible for the content of external ites. Read more. This page is best viewed in an up-to-date web browser with style sheets (CSS) enabled. While you will be able to view the content of this page in your current browser, you will not be able to get the full visual experience. Please consider upgrading your browser software or enabling tyle sheets (CSS) if you are able to do so. [cochlearwarmasthead.gif] THE DEAF VIEW By “Deaf” view, we mean the viewpoint held by persons who consider themselves members of the Deaf Community, who have a sense of cultural identity and pride, and maintain an affinity for other Deaf people around the world. According the the Deaf view, sign language is cherished and promoted as a primary means of communication. It is the birthright of all deaf people, and should not be denied to any deaf child. The Deaf Community includes hearing, hard-of-hearing, and deaf people. If you’d like to share your views, please E-mail us at editor (at) cochlearwar (dot) com. “There is nothing wrong with being deaf” Dear Editor, As a hard-of-hearing mother of two, I felt I had to share my story with you. When I was 16 years old, I was diagnosed with a progressive hearing loss. I have both sensorineural and conductive hearing loss. I was told that one day I could wake up deaf. It was the hardest news I had to face. They did not have cochlear implants back then. I had to learn to “deal” with it. A good friend of mine, who happens to be deaf, showed me a new world that I could be a part of, if I wanted to. I learned that this was not the end, but the beginning. I learned ASL from him. I went to college and made more friends. I worked in group homes with deaf adults with emotional, mental problems, and some were handicapped. I’ll tell you when you are first learning to sign and trying to understand what the person talking to you is saying, is a real awakening, especially when deaf retarded adults are communicating with you. I thought I was not understanding them correctly. As a matter of fact, I was . . . they were not making sense. I learned a lot about Deaf Culture, American Sign Language, and about Life. I learned to appreciate and be thankful for what you have because anyone of us can end up like the people I worked with. I chose to accept the fact that I would no longer be Hearing. I was angry at first. Being 16 is hard enough without being told that you will be losing your hearing. It was not easy. With help from my friends, I learned to cope and knew that I would be okay. I changed my career goal. I married a hearing man and we have two sons. When our first son was born, we thought everything was great. We had a new baby boy; life was great. When he started developing, we noticed he was not doing the things that babies do. He couldn’t hold his head up; he would learn how to do things and then didn’t do them anymore. I was teaching him to sign because he was not speaking, or even trying to peak. He did not babble like babies do. The signs I had taught him were gone; he did not sign them anymore. It was like I NEVER taught him. At eleven months he had his first seizure. Our son was diagnosed with Autism and Epilepsy. If God had come to me and said, “I’m going to give you a son with pecial needs. You pick the special need: Autism and Epilepsy, or Deaf,” I would choose deaf in a heartbeat. With being deaf, I know what to expect. I’ve been there. I know my son would be okay. I know he would grow up, go to college, get married, maybe have kids . . . the world is at his hands. Whatever he wants! Now? I don’t know what the future holds for him now. I know I will do my best to make sure he gets whatever help he needs. This is why I can tell other parents that being deaf is nothing compared to what other disability your child could have. Being deaf does not mean the end of life . . or the end. I can only say, be grateful that DEAF is the only thing “wrong” with your child. There is nothing “wrong” with being deaf. My husband asked me how to explain this issue to hearing folk in his class at College. They did not see or understand what the fuss was. I explained it to him like I’m going to explain it to you: Say all the people in the world were PURPLE. If you were not PURPLE you are nothing. You can’t get work, own land, vote, etc. But if you were PURPLE, you could be whatever and do whatever you wanted. All you have to do is take this pill. You take this pill and become PURPLE. Will you take that pill? No. Why not? BECAUSE WHATEVER COLOR YOU ARE, WHATEVER DISABILITY YOU HAVE, THERE IS NOTHING WRONG WITH YOU! That’s how DEAF feel. There is nothing wrong with being deaf. Just as there is nothing wrong with being White, Black, Latino, Russian, American, Hearing, PURPLE, etc. Some feel that the Cochlear Implant is Genocide. Yes, your child is deaf. You can cope, you can deal with it. You can teach your child that they are okay and nothing is wrong with them . . . YOU CAN LOVE THEM! You can teach them everything you want them to know. And when the time comes when they are old enough to make decisions of their own . . . they can try this Cochlear Implant. It’s a big risk and a very big decision to make. We want what’s best for our children. My point is there are a lot worse things than being DEAF. AND WHY BE NORMAL? Thank you for letting me share my story. I wish the best to all the parents our there looking for answers. As I am too! God Bless! Anita Hawkshaw Flint, Michigan THREE LETTERS FROM A NON-VICTIM The worst obstacle of all Thank you for having this forum. I’ve seen many other forums but they aren’t as objective as yours is. Having opportunities for both sides of CIs is very refreshing. It’s not a one-sided issue. Many seek to implant the person without even knowing why the person is deaf! My hearing loss is not really a “loss” because I don’t miss it! When I became deaf there were no such things as cochlear implants. All I had was a basic hearing-aid and being constructive myself about how to adapt to things. And that’s another thing—many aren’t bothered by being deaf. And many adjust to it. I’ve met many who have done very well while they are deaf. Being deaf does not hold a person back as much as attitudes about being deaf do. As a result of being constructive and adaptive ever since childhood, I got my education. And yet, some people say that hearing is needed for learning! How can a child learn when they are trying to adapt to a CI? I was able to learn many thing without hearing, without a CI.. Among the things I learned was ASL. This has helped me adapt even further! It’s possible for people to learn and adapt. The most important thing I learned was that being deaf was not a tragedy. I have learned from being deaf so I don’t want that taken away. Other deaf can learn too. Their learning should not be taken away. I come from a deaf family, which helped. No one in my family has a problem with being deaf. Why should they? They are successful while being deaf so a cochlear implant would not help them at all. My family has helped a lot. I don’t believe a cochlear implant would take the place of learning things from my family. I’ve also learned many things from other deaf. A deaf person can do whatever they want. The worst obstacle is not believing in themselves and believing that being deaf is a problem. Deafness cannot and does not need to be undone. My family has learned to live with their being deaf as I have. Being deaf is being normal in every sense of the word. No need for anything like a cochlear implant. The Right to be Deaf “It is the birthright of all deaf people, and should not be denied to any deaf child.” That sums it all up right there. Who has the right to tell a deaf child that they are insufficient as they are? No one does. Yet, many who try to implant them with a cochlear implant don’t realize this! They try to tell the child that they are not good enough as they are being deaf. What gives them this right? This is a reality that we have to face. Deaf children do not understand that they are insufficient as they are. On the contrary, they haven’t learned yet that they are not acceptable. I’ve known other deaf who don’t have an implant and they are not troubled by being deaf. What they are troubled by is the idea that some want to surgically alter them with something that might work. Or it might not! It’s a gamble that I refuse to take. With this, Deaf culture is misunderstood by those who wish to implant others. Deaf culture is human beings. Certainly, human beings have a right to be ourselves! We don’t have anything that’s life-threatening with being deaf. I feel very sad for the children because they can’t tand up for themselves. They depend on their parents to make wise decisions. The majority of deaf kids are born to hearing parents! How could these parents understand? They know what they’ve been told or read. If they don’t have experience being deaf how could they understand that it’s not that big a deal? Being deaf doesn’t limit someone as much as misunderstanding it does. That’s why before any parents try to implant their deaf child I believe they need to understand that being deaf is only a difference. We can adapt to other things, why not being deaf? I would say to parents of a deaf child that yes, some things will be done differently. But, they still are done! Just because the child is different from themselves doesn’t mean that the child has to change or get surgery. Especially, when that surgery may or may not work. If not, then everyone is worse off. And that’s where my heart goes out to them. Parents do not know if it will work or not. They are in a culture that depends on medicine and surgery to fix things, even those things that are only different, that are not a problem! Being deaf only means a different lifestyle and a different way of learning things. A deaf person doesn’t need a cochlear implant to urvive or to be successful! Success needs hard work. If a child gets implanted then their work will not be in achieving success. Their hard work will go to figuring out how to live and to figure out what’s wrong with them. There’s NOTHING wrong with them! Then why did they get implanted? Their parents had a problem with them being deaf! That problem is not going to go away with the cochlear implant. That problem will only get worse as the child tries to fit in with the other kids in the neighborhood. With so many restrictions on what they can and cannot do it will only cause the child to not be able to do things with the other kids. Then the child will really be disabled. And that’s the sad part. But if the child is not implanted then they can be a child and ee that the world is there for them to do whatever they wish with. The Loss of Compassion Why can’t people just accept us as we are? Why would they want to change us into what we aren’t? Why would they want to implant deaf? Some even want to implant all deaf! What has this world come to? We have not lost the ability to be compassionate! We have not lost the ability to understand ourselves and others. Then, why would someone want to implant deaf babies? Why would someone want to implant deaf kids? Why would someone want to implant deaf teenagers? Why would omeone want to implant deaf adults? My gosh! Have we lost the ability to understand? What on earth could a CI possibly give a deaf person that they can’t get otherwise? A deaf person—of any age—is still two things. They are a human being and they are themselves. How could implanting someone possibly do better? Don’t we have the ability to understand anymore? Can we not comprehend that being deaf does not take away anything from a person that’s valuable? My gosh! As a deaf person I have many friends and many people I know. If they have a problem with me being deaf then how is implanting me going to solve that? Whatever happened to understanding? Why do we have to put mechanics in place of what’s natural to us? Are we that much afraid of being different? How is being deaf a problem? If someone has a problem with my being deaf then putting a cochlear implant into me is not going to help at all!! What I need is compassion from other people. Not pressure to be who I’m not. Where is the compassion? J.J. Schmidt Why cannot we Deaf people be ourselves without CI or HA? Cochlear Implants can make you become totally deaf after you realize that CI is not working for you at all. It is too late for any person who went through that experience and lost all of their residual hearing. It is not necessary to put Deaf children into this bad ituation. Deaf children need better and to be treated better. Deaf children are innocent. A person with CI CAN’T “hear” like a non-deaf person. The reason is I am saying this because there are many failure people with CI in this society that many people never been heard. CI is full of risk that parent is willing to do their Deaf children which it makes me sick. I feel bad for those Deaf children who have no choice to make. The parents are actually destroy their true soul from the beginning which it is a totally WRONG. We have the right to learn what we want to learn not what we’re told to learn. Hearing aid device is better than nothing because there is unnecessary to have surgeries on Deaf children’s healthy. Give them a choice that they like or not like it anytime without being stuck with CI in their heads. As far as I know there is too risk to remove it by CI doctors who refused to do this removal at all. They know it is not safe to remove but why do Deaf people have to deal with CI devices as they cannot or do not wear it anymore. That’s very outrageous situation. NO one care but I deeply CARE for these Deaf children as well. Deaf children is so innocent and deserve to accept the positive reinforcement for their being deaf from the beginning. We do not need anyone to put them into a very negative reinforcement that Deaf or Deafness is bad negative word. Deaf people is not allowed to be Deaf if they are happy with which it is a totally wrong. All I’m seeing these people who loves to degrade people whoever disagree, as they believe Deaf children need CI. We have the right to learn what we want to learn not what we’re told to learn. Even though, people have a very negative emotions or feelings, here is the question, Do you think it is appropriate for people’s their negative emotions or feelings who have the right to implant on Deaf children? I think not because it is still carrying on the old behavior pattern cycles from these people’s own negative feelings toward Deafness issue. It need to be stop to have a very unhealthy behaviors and attitudes toward Deaf children from the beginning by these people who have a very low self esteem themselves and very negative view into a word “Deaf or Deafness.” Deaf children can learn anything but hear. They do not need to hear at all which it is none of anyone’s business since they born with it or becoming deaf as is. Just give them hearing aid if they like it or not before Cochlear Implant device because it is totally unfair. You can assume that they will hear everything as you are expecting them to have a better life in their future because of CI. What a joke! They degrade Deaf children into believing they NEED a CI NO one can cure or fix it. I hope someday you’ll understand what my meanings is all about. Think twice before you will give more damage Deaf children’s true soul and mind works. People creates more damage toward Deaf children’s self esteem and self acceptance. CI is the full concept of trashy evil medical as is. Medical Code of Ethics says “DO NOT HARM” including deafness. They do not tell you everything in a very honest approachment at first place. American Sign Language is the one true language as well as English is the one true language not spoken language as well as we can combine into Bi-Bi language. It is very equal communication for both Hearing and Deaf people altogether. It works very well. Who said we must hear and speak only? We can learn how to speak but it does not have the effective of successful to have our oral method only without sign language or hear the whole comprehension words with any devices. It does not make any sense because we do still miss out a lot in many ways as how can you expect us to hear everything while we learn with/without sign language. There is no sense to me at all. It is all about MONEY and DESTROY on everything what we are capable to do anything but hear. That’s turns me off. It leads more damage toward Deaf children’s true identity of their self esteem and self acceptance. Deaf children need to be accepted as they are and not be told they “need” something. Deaf children feel negative about themselves because they aren’t appreciated for who and what they are. That’s DISRESPECTFUL attitude from CI company as well as they have prejudice, oppression and discrimination that we are still dealing with it every day even nowadays. What a very discouragement behaviors that people have to act this way? It’s discouraging, selfish, controlling, and trying to grab power over Deaf community or Deaf children ‘s non-choice. We have the right to accept and be happy for who or what we are. We have the right to learn anything without hear because the importance of reading and the concept of language to understand are the answer. It has nothing to do with CI or HA or HEAR or SPEAK itself alone. Where is the respect of cultural diversity for American Sign Language and True identity Deaf children and people who does not want to have CI? Thank you! Diane White Frederick, Maryland If it’s not broken, don’t try to fix it Hi, you are so right. Cochlear implants are just glorified hearing aids, but for some one who doesn’t have the capacity to understand ound it’s ridiculous. If it’s not broken, don’t try to fix it. “Deafness is not a disability, but rather a different way of being.” Ahhh, just don’t get me going on oralism. Any how, nice site. Mike (hearing) Being deaf can be a gift...a great gift I am a 13-year-old girl, who happens to be deaf. I don’t have a CI, and I don’t plan to get one, ever. I don't think that I have any disadvantages being deaf, except for the fact that I cannot hear much uch as people talking. I feel that deaf people don’t need to be able to hear to be happy, and if a child’s parents DO want to put a CI on them, they should wait until s/he is older so that they will be able to decide what they really want to do, and not have to (sometimes) pretend to like it to please their parents. I have a lot of friends who have a CI or HA, and many of them think being able to hear is better than just being deaf. Some people don’t realize that CIs don’t help you hear much, and you can’t even wear it all the time. It doesn’t make you hearing, and it never will, so I will never see what it can do that improves your lifestyle. My friends say you can communicate better, but with a CI, you can only understand one person at a time because you still have to lipread. Some of them often tell me I am so lucky to have 2 siblings and a mom who are deaf, and now I can truly agree with them. It amazes me to see how badly, how far parents would go to implant their child. Once, someone even begged for money to fix their son’s CI. I used to long to be able to hear just so I would know what it is like to hear people talk, to hear little things. But, now I love being deaf, and will never stop treating my deafness as if it were a gift. My mom wants me to take speech classes, but I refuse to, because I don’t think I need it. Sometimes my friends try to provoke me into thinking hearing is better than being deaf, and it does make my mind wander for quite a while. So, parents, please don’t implant your child when they are not old enough to make their own decisions, and other deaf people (mostly the ones oralized and CI/HA lovers). Please accept that you will never fully be hearing and treat your deafness as if it was a gift...Because it is. If you grew up in a family like mine, you would understand why I think it is such a great gift to be deaf. I really hope that you will put this on the website because I don’t think that there are enough people who prize their deafness. Tanya S. If I am alive, I am whole First of all, let me begin by saying that I'm not exactly an accepted member of the Deaf culture. The reason being that I wasn't born Deaf. I became totally Deaf at the age of ten. Spinal Meningitis renedered me thus. I’ve now been Deaf since 1971 and, in 1984, I received word that my dad was contacting doctors, all over the nation, because HE thought I needed it. He’d not even taken the time to ask ME If I wanted it. (Can you imagine how I felt?) When he finally asked me, I told him, “Flat out, NO!” From that time, he’s often brought up the subject, hoping I’d change my mind. I look at this procedure as a farce! For parents (like my own), whose children were deafened and who still cannot accept having a “less than perfect” child, to harp, rant and rave, and also nag until the (often adult) child relents, is wrong. When I lost my hearing, I spent months, learning to live without hearing. I don’t want to have to spend months (and possibly years) learning to becoming something I no longer am. For my dad to continue to nag me about this is wrong. He is of the opinion that, unless I am whole (as he sees it) I need something. On the other hand, I look at it as — If I am alive, I am whole. I know Deaf people, all over America, who do not want to hear. For one thing, we’re fearful that the complaints about noise — by people who CAN HEAR, will bother us, when those nuisanses weren’t our to begin with. It’s a small price to pay to have peace. It’s a much larger price, if we allow our parents, who haven’t taken the time to understand how we feel comfortable, to chide us into receiving omething that will be a hinderance in years to come. Gary F. A Deaf man, living in middle Georgia __________________________________________________________________ [cochlearwar.gif] Introduction | History | Forum | Newsflash For Parents Only | Myths & Facts | Deaf can do All original material used in CochlearWar.com is the property of MSM Productions, Ltd. and is protected by copyright. No material can be excerpted, paraphrased, or published in any form (whether in print of electronically) without the express written permission of the owner. ©2003-2016, MSM Productions, Ltd. [msmhome.gif] [cochlearwarmasthead.gif] IMPLANTEES’ VIEW Persons who have received cochlear implants, whether voluntarily or involuntarily, are an invaluable resource in our community. If you are an implantee, we encourage you to share your story with us. If you are a deaf person with a currently-functioning implant, what has your experience been? Has it been good? Bad? If your parents made the choice for you when you were a child, how do you feel about it? How has your experience been? And if you’re one of the growing number of deaf people who have stopped using their implants or have even had them surgically removed, we’d like to ?read? from you. Please E-mail us at editor (at) cochlearwar (dot) com. Metabolic mess-up Hello, my name is Daniel Foley and I have been implanted at age 13. It does nothing but causes problems with me physically. Since I have been implanted, I noticed that my metabolism slowed down and I gained weigh. By the time I became 16 years old I weigh almost 300 pounds and I had to lose weigh so I can hear, that is what my doctor told me. Then I got very sick and ended up in a wheelchair and gained more weighs. Then I finally stopped wearing it and I felt so peaceful and less tress. Yes, I still am heavy and my BP and cholesterol are up to the roof. I really wanted to take the inside part out so bad. The strange thing is I was supposed to hear things with the implant, but I never heard one thing and my parents still tried to make me wear it until I became 18 and now I am almost 20. Now my parents are doing better. They also told me that my personality without the implant on is better than with it on. My friends said the same!! I even like myself better as Deaf person than “hearing” person. Thank you for your time to read this letter. Daniel Foley a student from MSSD (Model Secondary School for the Deaf) Out from the bubble: enjoying life with an implant Hello, my name is Betsy Hitzel and I’m 28 years old. I just got my implant last October 2003, and I’m very happy with it. The cause of my hearing loss is called Perrault’s Syndrome. I was deaf in my right ear [and] was fast losing hearing in my left ear, which no one knew why. My life has been a struggle with my hearing loss. I had to go to speech class in grade school, because I had a problem pronouncing words, which helped some, but there are still words I cannot pronounce. I fell 2 grades [behind] because of my hearing loss, and cheated my way through high school because I could not hear what the teachers [were saying]. I’ve worn 3 different types of hearing aids through my childhood, which would help for a couple months, then it wouldn’t. I spent my whole life denying I had a hearing disability, because I was ashamed. Because I never heard when people talked to me, I was shy and didn’t talk to very many people. It was like I lived in my own little bubble. When I heard about the implant I was scared and worried, but the more I thought about it, I got excited. Now I’m happy I did it. Sounds that most people take for granted, such as birds chirping, wind blowing outside, even hearing the engine of a car when started, things people do not think about. So I’m glad I got the implant. I admit I don’t hear every word people say, but I don’t say “Huh?” all the time now. I’m hoping I can get the implant in my left ear. I feel whoever invented the implant, I would like to shake his or hers hand and thank them for giving me my life back. Betsy Hitzel A pain in the . . . tooth! Hello, My name is Lola (Beaver) Phillips, Ben Beaver is my Great Uncle. Anyway I come from a large deaf family and I have a deaf granddaughter. And I have a cochlear implant my self. I have had mine for about five years and I am against children having one until they are much, much older. I want to tell you my story and see if you can pass it along for me. One day I was having a bad toothache and I went to the dentist and the dentist says nothing wrong with my tooth as I had root canal where the pain was and he asked me want it pulled out and I said “no!” so I asked him if he thought it was coming from my cochlear implant as I notice with certain sounds it would make it ache so I decided to go back to the place that did my cochlear implant and I explained to the doctor what I just told you and he was stunned and acted like it was weird but decided to test me in the booth and use different pitches of sound and found there was a certain sound that made it ache and corrected the mapping on my hearing aid. Please do not allow these little ones to have it done also it is hard for me to get an MRI due to the cochlear implant so theses little ones may not be able to tell something is wrong. I hope this will help. Thank you, Lola Phillips “The doctors wouldn’t listen”: an implantee’s nightmare Hi. My name is Nan Young. [Editors’ note: All names in the following account have been changed to protect the privacy of the contributor, ince her case is currently being litigated.] I live in Melbourne, Victoria, Australia, I am profoundly deaf, late-deaf, I lost my hearing at age 44, I had an implant put in in January 2001 and I had it removed in April 2002. I would love to be able to tell my story to you, so that many more can see the problems I had with the implant and also the trouble I had with the doctors not listening to me, and then leaving me to fend for myself with not much help from them once the implant was removed. I would like people to see the other side of the Implant “Problems” but first I need to see if you get this, so that I can continue to give my whole story. This I need to do for myself and for all those thinking of getting the implant, so that one day I may feel that I have done my best to show the other side of it. Please, when you get this E-mail, E-mail me back so that I know you have received it and then I can continue with the long story of my journey with getting hearing from the implant and then going back to No Hearing again. Thank you for this site; it is much needed and I really appreciate it. Nan Young Melbourne, Victoria, Australia The following account is the official complaint filed by Ms. Young. It has been sparingly edited, but not abridged. For example, “Drs” has been changed to “doctors,” and “Vic Deaf” has been spelled out once as “Victorian Deaf Society.” “RVEEH” has been spelled out as Royal Victorian Eye and Ear Hospital. (This hospital houses one of the world’s leading cochlear-implant clinics.) Punctuation and capitalization have also been regularized. We have responded to Ms. Young’s request, and thanked her for sharing her story with us.–Editors To Jan Jones, Complaints Department Royal Victorian Eye and Ear Hospital East Melbourne, Australia This is my Complaint Summary as I remember it happening. I don’t recall all the dates for all these visits and trips to hospital, but they would be in my Medical Records at the hospital, and also the Audiologist has her records of dates and times as well. Firstly, I was given the operation date back in December of 2000. Kim Arnold, the audiologist, rang me to tell me that the date of the operation was 30/01/2001. I was over the moon. But on the 5th January, I had a setback. I got quite a bad ear infection in the right ear, as this was the ear that was going to be operated on. I rang Kim and she made an appointment for me to see Dr. Patrick Smith; the appointment for this was 10th January. Dr. Smith told me that the infection was bad, but he would be able to clear it up before the operation, so not to worry. The infection got worse so I went back. This time I saw Mr. Robert Cash. My daughter Kat had to drive me as I was unable to drive. Mr. Cash did some tests with me, and said he didn’t think it would be a good idea to have the operation, he said I should wait and have it in about a month’s time. Then a week or so later the infection cleared, so I again saw Dr. Smith. He believed that it had cleared and there would be no problem going ahead with the scheduled date of the operation on the 30th January. I went into the hospital on the 29th January [and] stayed overnight before the operation, which was early on the 30th. I awoke from the operation feeling reasonably good with my head bandaged, a little dizzy, but that was all. Late in the afternoon the bandages were removed. Soon after this, I felt like I had fluid in my head around the implant area. I spoke to a young doctor (can’t remember his name), who aid it was impossible to have fluid in that area, and said not to worry, so I tried not to worry. Still, the next day I felt like the fluid had got worse, and I had this noise also in my ear. I saw the ame young doctor in the hallway of the hospital and told him, and he aid not to worry as this would go [away] in time. I was allowed to go home the next day, Friday 2nd February. That night, I felt very sick at my parents’ place, and my head was hurting really badly. My father rang the hospital and they told him to take me to the local G.P. to look at it, which we did. He prescribed antibiotics and said that it was inflamed and infected. This was on the 3rd February. It did start to feel a little better for a day, then it got worse, so I went back to ee one of the doctors on the 6th February. Mr. Cash was there, and he aid that there was a stitch abscess and he would cut it out. On the 13th February I was to be switched on! My daughter Kat was with the audiologist, Kim Arnold, and myself. I was switched on, and it was a great day for me, to be able to hear again! It was quite an experience; the sounds were very strange and not what I had remembered, but I was happy, as I could hear something. For the next couple of weeks I used the implant a lot trying to understand the T.V. and people talking, I had to go back to the Implant Clinic on a regular basis once a week, at that time. On my next visit to see Kim, I told her of the noises I was having and that even when I took off the processor I was still having these noises and that they were keeping me awake at night, and that the infection on the incision line was still there. So she took me down to see a doctor,, and he said that I should stay in hospital on more antibiotics, which I did. On this stay I told the doctor of the fluid feeling and the noises I was having, and he said not to worry, as this was quite normal, some tinnitus after the operation. I said I didn’t believe it was tinnitus, as I had had tinnitus all of my life, and this was totally different, this noise was when I touched my ear or moved my head from side to side, or tried to lie down at night. It kept me awake. I had had hardly any sleep, and I believed it was getting worse. Then Mr. Cash said not to worry about it too much, and he gave me a cript for some tablets to help me sleep. I was to still see the doctors and Kim on a regular basis, and at each visit I told Kim and the doctors of the problems I was having, but things never seemed to get anywhere, and I was not getting any answers. I had another trip into the hospital. This time it was for insomnia. I had not had any sleep for days. I saw Mr. Cash, Kim Arnold, and Dr. Smith on the 2nd^ floor in Mr. Cash’s office. They all spoke with me, and Kim and Dr. Smith believed I should stay in hospital again, to help me get some sleep. I don’t know if Mr. Cash agreed. But he left the room, and I was with Kim and Dr. Smith and they asked me to please stay in the hospital, so I did. I was put into a private room so I could have complete rest. Mr. Cash came into see me the next day and said to me that he was very, very sorry for the trouble I have been having, and that getting some leep would help me. I stayed for a couple of days with little sleep, till! Then I had that same young doctor whom I had spoken to about the noises and fluid. He told me that I could go home! I said to him, “Mr. Cash told me to stay,” he said “No! I said you can go!” and then he left the room. The male nurse, Steve, came in and I just cried and cried, I was so upset at what was going on. Steve the nurse went and got his supervising nurse, and she said, “Don’t worry,” as Mr. Cash had aid not to leave the hospital until he had seen me. Mr. Cash came and saw me again, and again he said he was so sorry while patting me on the leg. I was furious and said, “What can I do?” Mr. Cash said he would just like to give me a big hug to help me, but he didn’t. It was this day that I asked Mr. Cash to just please take the implant out! I didn’t want it in anymore; it was causing me too much trouble. My next visit to Kim was quite strange. I felt like I was a burden. Kim asked me if I would like to see the social worker, Bette Jamison. I agreed to give it a try. So I saw Bette. She was there to help me cope and to try and get some answers from the doctors as to what they were going to do next. At my next visit, Kim told me that I was not the only person having problems with the implant. There were others! When I saw Mr. Cash next, I asked him about the other people with problems, and I told him Kim had told me of these others with problems like me, and his reply was that Kim didn’t know what she was talking about and that what she said was piffle! By this time, I was getting very depressed and frustrated with all that was going on. The doctors were not listening to me, and the ear infections were getting more frequent and a lot worse and for longer periods. I kept asking the doctors and Kim, “Could you please take it out?!” I said this on numerous occasions, but with no answer. My next few visits to Mr. Cash were very interesting. He was saying that my neck was causing my problems with my ear, then said my back was causing the problem. I said to Mr. Cash [that] I was fed up with coming 5 hours to hear these excuses, and be in with him for about 10 to15 minutes. Things got so bad that the social worker, Bette Jamison, made an appointment for me with Mr. Cash, Kim myself, and [herself]. This appointment was on the 24th May 2001. At this appointment, I was handed a letter, stating how concerned they were for me. This letter also [had] a list of Management Options that they, the Implant Clinic, would give me to help. There [were] a number of options for me if I would prefer not to undergo further surgery, also a list of options if I was to consider further surgery. (This letter I have already sent to you.) I got so sick of hearing these things that I took Annike Reed, a lady from Victorian Deaf Society, with me to the next appointment. This appointment was with Dr. Smith, Ms. Reed, Kim Arnold (audiologist), and myself. At this meeting, Dr. Smith told Annike and myself that the electrodes were too far down the neck, and he looked at the CT scan while saying this. He then said that this would be causing the noise in my ear. He said they would have to operate to fix this problem. Annike asked “When?” And both Dr. Smith and Kim said, “As soon as possible. This is urgent.” I asked the doctor to also look in my ear, as I had had some fluid and discharging from it. He said “YES!”—that there was fluid and infection in the ear, and gave me a script [perscription] for some drops to clear it up. He also said “As soon as this clears, about two to three weeks,” they would operate. I told him I was going on holidays for two weeks. And he said, “Okay, when you come back from holidays the ear should have cleared up,” and they will be able to move the electrodes up higher in my head. The doctor also said to contact him when I got back, I said, “Okay, that would be great!” I was quite happy, thinking that after my holiday, things may get back to normal and I could get on with my life again. This was in August 2001. I came back from my holiday on the 4th September and made an appointment to see Dr. Smith. I went into see him and was told he was ick—even though I had seen him walking around! So I was told I would have to see Mr. Cash. I said “Okay,” and went into see Mr. Cash, and he said, “What are you doing here?” I was stunned. I told him, and he said he knew nothing of this. And I would have to wait until he had poken to Dr. Smith. I was furious and told him that he said that I hould try this medication, Tegretol, and contact him back in about 4-6 weeks. I walked out of there so upset, that again nothing had been done. I E-mailed Mr. Cash after the time he had told me to stay on the tablets, but it took a long time for him to contact me back. When he did reply to me, he said he thought it would be a good idea for me to ee a psychiatrist, which was actually on the letter that was [given to me] back in May 2001, and this was now September. This was the first time that anything thing from the letter had been mentioned. Also, I forgot to mention that Bette was trying to get me accommodation omewhere for long-term stay to help with the sleep and for them to check the implant and infections. That was [also] back in May, and it was now September. Every time I saw the doctors there was always an excuse. That something else was wrong, never the implant! And I still asked [them] to please remove the implant or try and fix it, and also to move the electrodes up like Dr. Smith said he was going to do. Mr. Cash’s response to this was, “It’s piffle; the electrodes are not too far down the neck.” And I never saw Dr. Smith again after that; it has always been Mr. Cash. My next visit to Mr. Cash was with my brother, Mark Riley. When we got there to see Mr. Cash, he had Dr. Smith, Kim Arnold, and another man, a psychiatrist (I don’t remember his name), and myself. Dr. Smith did all the talking, and so did my brother. It started with ear infections, again, and that there had been a lot of fluid coming from the ear, and again this was put aside and they, the doctors spoke of what they wanted! I said that I wanted the implant out, and Dr. Smith said that it would be too expensive to do that. My brother then asked Dr. Smith, was money the problem here? And Dr. Smith said “No, of course not!” Then my brother said, “How about [if] Nan sees Dr. Sol DiLeone” (psychologist) “to see if he could help before the final decision was made?” They all agreed—except for me! I believed I had waited long enough, but the majority ruled, I guess, and so I left again with no answers to any questions or an answer on getting it fixed or removed. But I agreed to try this for approximately 6 weeks. I went to see Dr. Sol DiLeone. He seemed rather good; he was the first person to actually listen to me about my ear and what was going on with it and the noises and the ear infections. I saw Sol a number of times, but he didn’t seem to be doing anything much for me in the ear department. The ear infections were getting worse, and the fluid was really bad and it had a terrible smell as well. My G.P., Dr. Forrester, whom I had seen on several occasions when I had ear infections, had aid that the ear was so infected it had totally closed up and he was unable to even put drops into it. My next visit was to see a psychiatrist and also Mr. Cash. I had my parents with me this time—Kevin and Maggie Riley. Mr. Cash asked me to see the psychiatrist, so I did by myself and then my parents came in. He asked me lots of questions, and also my parents as well. Then we had to wait for Mr. Cash to come back to see him; I had gone outside with my mother when Mr. Cash arrived. My father asked him what was going on. Mr. Cash replied to my father that “if she wants the electrodes moved, then we will do that, but we don’t think it will make any difference.” Mr. Cash also said to my father, “We are not worried about what she says now; we are worried about what Nan will say in 12 months’ time.” My mother and I came back and saw Mr. Cash, and he didn’t say much more and then he had to go again, with no answers. I left again feeling very frustrated! Nothing was being done, again, and till there were infections in my ear that they didn’t believe. [On] my next visit to Mr. Cash, I said I wanted the implant taken out. Again, his response was, even if the implant was taken out, at this tage he didn’t believe that it would get rid of my problems. He believed that it was too late—that the problems I was having would till be there even if it was taken out, as it had been in too long! So I said “WHAT!?! Does this mean you have stuffed my head up?!?” And there was no reply. Kim walked out, and I just cried and cried, and then Mr. Cash said he had to go, but please make another appointment time. During all this time I had been seeing [the] lady from Vic Deaf, Annike Reed. I spoke with her and she was appalled at what was going on and the treatment I was getting. My next appointment with Mr. Cash was 17th January 2002. At this meeting was my daughter Kat (she is 18), Kim, and myself. I told Mr. Cash I had the start of another ear infection. So he asked me to go and get on the bed so he could see it. While I was in with Mr. Cash, Kim was in the other room asking Kat a lot of questions—things like “What would you feel like if your mother had the implant removed?” and “Why had your mother been to see so many other doctors about the ear infections?” I felt like this was very inappropriate to ask my daughter, as it was my decision and no one else’s. Mr. Cash looked in my ear and he said he believed it was my jaw that was causing all the problems, and didn’t believe me about the infections. Kat said she was disgusted [at] the way I was being treated. She said they treated me as if I was a child and spoke down to me. This time, Mr. Cash asked me to ee a physiologist to get my jaw checked out. I never did this, as I was furious that he would think that my jaw was causing my ear infections. After that appointment I went and saw Marina Petrakis, [of the] Complaints Department at the Royal Victorian Eye and Ear Hospital. Annike Reed from Vic Deaf had made this appointment for me. My next visit to see Mr. Cash was on the 31st January 2002. At this meeting [were] Mr. Cash, Marina Petrakis, Annike Reed, Kat Young, and myself, I started by saying to Mr. Cash that an infection had started again in my ear. He got off his seat rather quickly and said, “Good, let me see!” He looked in it and said “YES!”—that there was an infection in the ear. He then went on to say that there was a small hole in the ear and that an electrode was trying to push through. I was amazed and sort of happy as well that he had actually seen the infection and that he had also seen something else as well. He said he thought I had better stay in hospital so they could treat my ear with trong antibiotics on an IV drip, and also check the hole as well. We all left the appointment and I said to both Marina and Annike that I felt relief, but I was unsure as to why he had just said it this time! Was it because Marina and Annike had been there? They said “No,” that he wouldn’t have said it if it wasn’t there! I was very unsure, as he had never said anything previously before; it was as if I didn’t believe him myself this time. I was to go home with my daughter and then head back to the hospital later that night. I went back to the hospital around about 10.00 p.m. I had to go to Casualty. I waited there for ages, then I saw a nurse. She took my details, and then I waited to see the doctor to put me into the hospital. This was about 11.30 p.m. I saw a doctor and he asked all the questions and then admitted me. He said, “I need to take a swab of your ear for the infection,” which he did. He then said he could not see any hole in my ear, like Mr. Cash had said. I got up to the room at just after midnight, and they put the IV drip in after 12.30 a.m. The next morning, the 1st [of] February, I had to go and have a CT scan. I did this and later that night the doctor came in and told me about the can. He said that the scan showed a lot of fluid all around the implant area. I was totally stunned! Fluid? He said yes, but he could ee no hole that Mr. Cash was talking about. Mr. Cash came into see me and said, “We can treat this and fix the problem.” I was over the moon. Then, later on the next day, at about 2.00 p.m., I was asked to go down to see Mr. Cash on the 2nd floor. Down there, I waited for ages, but eventually I saw him, and he said he would like Dr. Smith to see me as well as a Mr. Gibson, whom I had never seen before. I was down there for nearly 3 hours with them checking my ear, and then the CT scan, and then more checking my ear. Dr. Smith came and spoke to me about it all. This was the first time I had seen him for ages. I spoke about the fluid, and he then said to me, “Don’t jump in too early.” I didn’t understand what he meant. Then all 3 doctors had me up on the bed, checking my ear, and then they said they had finished. I waited again for ages, and Mr. Gibson came up to me and said, “There is NOTHING wrong in your ear other than an infection.” I was devastated. WHAT?!? Mr. Cash had told me there was a hole and the electrode was pushing through, and the doctor told me that the implant area was full of FLUID! Now I was told there was nothing? I went back up to my room and I was too furious, I think, to even cry. The nurse came and said that “Mr. Cash would like to see you in his rooms,” so she took me down. I actually saw Mr. Cash in the hallway. Before his room, he spoke to me in the waiting area, me sitting and him tanding at the desk there, people passing through all the time he was talking to me, then he asked me to come into the room so he could see my ear. I did, he said he didn’t see anything in there this time. I aid “Could you please tell me how I can have a hole and an electrode pushing through, and my head full of fluid and now, a day later, I have nothing?!?” He said he was sorry; he must have made an error when looking in it. I said “Oh, yeah? Well, I want the implant removed!” When I said this we were just outside his room, in the hallway, again. He then told me that having the implant removed was not a consideration at all! I just looked at him and said, “Get stuffed!” and walked off. I am not pleased with myself for saying that, but I was just so furious that this had all happened. Then I went back to my room. They removed the drip for me. I then asked the nurse if I could see Marina Petrakis again, which I did. I received my Ciproxin tablets from the nurse and was allowed to go home. I forgot to mention I was approached by one of the nurses on the ward. She said to me I was silly for going to the Complaints Department to ee Marina Petrakis. She believed this would not be in my favor at all. And then another nurse came and spoke to me and he said I should go and get a second opinion. He believed that I was getting a raw deal from the doctors and staff. I am still waiting for something to happen. It has been nearly 14 months and I still have the noises, ear infections, and the throbbing in my head. And still no answers and nothing done. However, I do have another appointment with Mr. Cash on the 12^tth March at 12.30 p.m., hoping that they will agree to remove the implant. If not, I am going to have to find someone who will. On the 1st March I went and saw my local G.P., and he said to me to ask if the implant was pressing on or against the internal carotid artery, as this could be causing the throbbing in my head. I am hoping that you may be able to help me get something done on getting the problems fixed or on getting the implant removed. Yours sincerely, Very happy with the results Editor, I am writing to share my real-life experience with C.I. I want to share the balanced story here so not all is bad. I was born profoundly deaf and was able to use hearing aids during my growing years. When I was around 35 years old, my residential hearing has bottomed out which mean that no hearing aid could help me. It is my trong belief that no little children should get c.i. because it is not really better than hearing aids. There are excellent digital hearing aids that are programmed to fit each child's hearing needs. By all means, use them. I really hate to see little kids getting implants but it is their parent’s decision. I often wonder about the longevity of implants. I never considered C.I. because it did not have good beginning with people. About two years ago, (I am in 50’s), my old school mate got in touch with me, and began to share about her c.i. She is very happy with it. After many questions, soul searching, exploring my personal need, etc., I decided that I do miss hearing and went to see the ENT doctor about it. I was found to be a good candidate to get C.I. After the urgery, and several adjustments, it was slow in getting better with ounds. I am very happy with the results. It does not provide the perfect hearing. When I take it off at bed time, I become totally deaf. It is just like hearing aids for me. I notice the nice benefits from using c.i. I can hear the birds chirping, cars going by, dogs barking, people talking with me and I understand them much better. There are many little sounds in this noisy world. I am still deaf and still use ign language. I use interpreter for meetings. C.I. enriches my life much more than before. It is nice change for me. It feels so good to hear my adult kids calling me, “Mom!” There are always some risks with any surgery, and I understand that it may not work for some people. I take a risk whenever I need a surgery, and pray for the good outcome. When you go to the hospital, you have to ign the papers saying that there is no guarantee, unfortunately. Some people are pretty leery about that. I believe that life is full of chances, and it is really personal choice to take them or not, like that TV show, “Extreme Makeover,” for people to have so many surgeries to improve their personal appearance. C.I. is much smaller surgery in comparsion to those surgeries. Dianne K. Happy C.I. User I don’t think I would have made it this far without an implant Hello, my name is Paige Adams. I'm sixteen years old and here is my tory. I was born to proud parents in May of 1988 and I was a healthy baby with no hearing problems At one year old, I was diagnosed with bacterial meningitis. Luckily, I urvived after receiving a spinal tap, but I remained in a coma for five days until I regained consciousness. Doctors feared that there would be some brain damage and there were no signs of any kind of brain damage. My hearing loss began at this point and ended when I was two and a half years old. At the age of two, my mother soon realized that I was not peaking just like others my age, but I was developing other mechanical kills. I was put in late-development classes, but my mother was convinced that I was deaf. The doctors would not listen to her and kept telling her that I was not deaf. Until one day, the teacher noticed the ame thing my mother was talking about and that teacher told my mother to take me to the audiologist. The audiologist confirmed that I was profoundly deaf in both ears. Immediately after this confirmation, my parents placed me in a program in the city that specialized in the education of deaf and hard-of-hearing children. My mother began taking sign-language classes and carry around books of signs to be able to communicate with me. My progress was incredible that my parents could not believe it. Hearing aids were provided and I disliked the hearing aids. So my parents were looking for another efficient way for me to become independent and have many opportunities to learn or communicate. At the age of five, the University of Virginia offered a possible operation for a cochlear implant. After doing research and listening to deaf pro-implant and deaf community advocates, my parents decided it was for the best for me to receive a cochlear implant. After a six-hour urgery, I had a magnet installed inside my skull on my right side above my ear. Within a month, I was wearing my cochlear implant to chool and I could hear things that I had never heard before such as the toliet, people walking on carpet and wooden floors, music, etc. Even if it was overwhelming at first, I was able to maintain my hearing and use it as an advantage for my education and communication skills. Today, I still wear the same old cochlear implant and I love it!!!! Even today, I hear something new and it is a learing experience. Also, I enjoy being able to communicate with hearing friends without having an interpreter beside me. I do use an interpreter in the classroom at chool to help me to receive the education I need. I am currently a junior in high school and I am taking Calculus, Advanced Biology, History and English courses that happen to be AP (advanced placement) courses in college. I have taken Spanish, Latin, Advanced Chemistry, Algebra (one and two), Geometry, and Precalculus. If I didn’t receive my cochlear implant, I do not think I would have made this far. My goals are to graduate high school with an advanced diploma and to go to college and receive a Master’s Degree for a major in science. Sincerely yours, Paige Adams __________________________________________________________________ [cochlearwar.gif] Introduction | History | Forum | Newsflash For Parents Only | Myths & Facts | Deaf can do All original material used in CochlearWar.com is the property of MSM Productions, Ltd. and is protected by copyright. No material can be excerpted, paraphrased, or published in any form (whether in print of electronically) without the express written permission of the owner. ©2003-2016, MSM Productions, Ltd. [msmhome.gif] [cochlearwarmasthead.gif] THE PROFESSIONAL VIEW This department was originally titled “The Audist View.” “Audist” refers to those who maintain the supremacy of speech, speechreading, and ultilizing residual hearing as a deaf person’s primary mode of communication. This includes deaf and hearing oralists, professionals in the medical/audiological field who work with deaf patiemts and clients, cochlear-implant advocates, surgeons, speech therapists, clinicians, and parents. However, as Ryan McCreery’s response shows, it’s not necessarily a black-and-white, good guys-and-bad-guys cenario. A number of audiologists and other clinicians and medical professionals respect the Deaf community and recognize the diversity of communication choices for their deaf clients. Some already know sign language, and some are learning it, so that they can better communicate with their clients and patients. This is a good trend. Not all audiologists are audists, and it is therefore unfair to tereotype them as adhering to a repressive oralism-or-nothing philosophy. Audiologists and other professionals who wish to share their views are welcome to E-mail us at editor (at) cochlearwar (dot) com. The importance of establishing bridges between Audiology and Deaf Culture: an audiologist’s view To Whom It May Concern: I have been monitoring the Cochlear War website for some time, as I am interested in learning more about the views of the Deaf Culture and Community regarding cochlear implantation. As a Pediatric Audiologist, I work with a vareity of families to help them learn about hearing loss, but primarily to help them and their children to learn to communicate. I realize that many in the Deaf Culture and Community have had extremely negative experiences with Audiologists, and that there are many Audiologists who do not respect the heritage and language of the Deaf Culture. However, I am concerned that your website seems to make no distinction between those Audioloigists and a growing number of us who encourage families to learn ASL, seek mentors and information from the Deaf Community, and do not believe that hearing aids, cochlear implants or any other form of Audiological Habilitation are a “cure” for hearing loss. Instead, your website promotes the idea that all Audiologists are “Audists.” I understand that a large number of Audiologists would probably qualify as Audists, but I think it's important for families to realize that there are a number of us who are not opposed to the Deaf Culture, and recognize the Deaf Community as an invaluable resource for our families. While I value the opinions and experiences of Deaf Individuals, the information presented on your website makes the Deaf Culture seem inflexible, uncooperative, and unfriendly, which I know is not true, because I have friends and associates who are Deaf. I think it’s important to consider your target audience. Over 90% of children with hearing loss are born to hearing parents, most of whom have little or no information about the Deaf Culture. Thanks in part to universal newborn hearing screening in many states, the first professional a family meets when they have a child with hearing loss is an Audiologist. A good Audiologist is your greatest ally in educating families about the Deaf Culture and the language and history associated with it. If I didn't know the Deaf Culture from my own personal experiences and I came across the information on your website, I would be less likely to consider sharing this point of view with families, imply because the way the information is presented makes the Deaf Culture seem scary to hearing people. I know from my experience that putting hearing families with deaf childrenin contact with the Deaf Community is incredibly important for the parents and their children. I agree with your statement that the views and opinions of the Deaf Culture on many issues are unfairly ignored as part of the big picture. However, instead of sharing all the wonderful history, language and benefits associated with being part fo the Deaf Culture, your website stereotypes Audiologists as Audists, and in the process gives parents the idea that we’re opposed to each other in some way, when really, it’s not like that. I feel like more energy hould be put towards building cooperation between Audiology and the Deaf Culture, since I think that both are important parts of helping families. The Cochlear War Website seeks to divide rather than build this cooperation, and it puts me in an incredibly frustrating position. Best regards, Ryan McCreery, M.S., CCC-A The Pediatric Hearing Center Mary Bridge Children’s Hospital and Health Center Tacoma, WA __________________________________________________________________ [cochlearwar.gif] Introduction | History | Forum | Newsflash For Parents Only | Myths & Facts | Deaf can do All original material used in CochlearWar.com is the property of MSM Productions, Ltd. and is protected by copyright. No material can be excerpted, paraphrased, or published in any form (whether in print of electronically) without the express written permission of the owner. ©2003-2016, MSM Productions, Ltd. [msmhome.gif] [cochlearwarmasthead.gif] THE PARENTS’ VIEW On this page, you will find a variety of quotes representing the divergent views of parents of deaf children. If you are a parent of a deaf child and would like to share your views on cochlear implants, please E-mail us at editor (at) cochlearwar (dot) com. The view of a CI parent I am the mother of a deaf 9-year-old, who was implanted with a CI approximately 6 months ago. I am interested in Deaf culture and enjoy reading anything pertaining to it. I am hoping when my son is older he will show an interest in learning more about the Deaf community. I have tried in the past to attend Deaf culture functions with him but found we were ostracized & ignored (having chosen the oral route we don’t know much sign language – just the alphabet & a few simple words & phrases – but we’re trying). I just wanted to express my opinion that members of the Deaf community we have encountered & any attempts we have made to join in have been very discouraging. It seems there is very little interest on the Deaf community’s part to encourage a deaf child with a hearing parent to participate in the Deaf culture experience. Don’t let the fact that my son has a hearing mother put you off from him – he is one of you! In addition, while reading your Myths & Facts section, I found your comment about questioning the risk of taking antibiotics with regard to CI’s & meningitis to be somewhat overblown. As a parent (Deaf or hearing), would you think twice about giving your child antibiotics for ay a throat infection? An antibiotic is an antibiotic, regardless of what area of the body it is used for. Your article makes it sound as though you should not even consider an implant because of a perceived risk which might never even happen. Thanks for your great website. I enjoyed reading it very much. Keep up the good work! Karen Fewson Toronto, Canada __________________________________________________________________ [cochlearwar.gif] Introduction | History | Forum | Newsflash For Parents Only | Myths & Facts | Deaf can do All original material used in CochlearWar.com is the property of MSM Productions, Ltd. and is protected by copyright. No material can be excerpted, paraphrased, or published in any form (whether in print of electronically) without the express written permission of the owner. ©2003-2016, MSM Productions, Ltd. [msmhome.gif] [cochlearwarmasthead.gif] MYTHS AND FACTS A NOTE ON TERMINOLOGY The term "Deaf" (with an uppercase "D") is used here to emphasize a cultural affiliation: deaf people in the United States and Canada who use American Sign Language as their everyday means of communication, who identify as culturally-Deaf, and who consider themselves members of the Deaf community. (Members of Deaf communities in other countries use their own native sign languages, but for the sake of simplicity, only ASL is mentioned here.) Many, although not all, have attended schools for the deaf; a number have also attended the "Big Three": NTID at RIT, Gallaudet, and CSUN. We use the broad, inclusive term "deaf" (lowercase "d") to refer to any person who is medically/audiologically deaf, irrespective of communication mode, cultural affiliation, or identity. We also use the term "Hearing" (uppercase "H") to emphasize the cultural aspect of the hearing community. We are using the pronouns "we" and "us" to refer to the MSM Productions, Ltd./DEAF.com staff and, in a broader sense, members of the Deaf community–which includes ASL-Deaf people and hearing people who share our concerns and support and encourage our work. The Deaf community is an intermodal alliance–that is, it includes deaf, hard-of-hearing, and hearing people. This is the community we erve. Click on any question to read the answer. What is your opinion of cochlear implants? Many doctors are calling it a "revolutionary technology" that is transforming what had been an isolated group of people, namely the deaf. How do you see the development in implants? Do you feel that the mass media has given the CI controversy fair and balanced coverage? Or has it been biased? If so, how? Can you give me an example of media bias? What is the impact on Deaf culture of the growing number of people who are using these devices? Do Deaf people feel insulted by the fact that so many hearing parents are willing to risk putting their children through surgery in order to eliminate deafness? What bothers you most about implants? What are some of your concerns about children with CIs? On what basis do you say that they have no real interest in the well-being of deaf children? What else bothers you? Doesn’t the CI cure deafness? Doesn’t it make a deaf person hear? Doesn’t it enhance the quality of life for deaf children? Isn’t it important for deaf people to acquire good speech and listening skills? Aren’t deaf people who have good speech more successful than those who rely on signing alone? How much person-to person contact have you had with deaf people with implants? Do you consider people with CIs part of the Deaf Community? Aren’t most people with CIs happy about their implants? Do you have questions about the effectiveness and safety of implants? Well, they can give implantees antibiotics, right? If the CI is here to stay, isn’t it a waste of time and energy to try and fight it? Those who are in favor of cochlear implants say that implants can make deaf children and adults hear. But Deaf advocates say that even with an implant, a deaf person is still deaf. What does that mean? Even so, doesn’t the CI have the power to bring an isolated, marginalized group of people into the mainstream of society? Aren’t implants a good thing for society? Why are some deaf people so bitterly opposed to implants? Why do you object to giving implants to deaf children? Isn’t some hearing better than nothing? Isn’t artificial hearing better than no hearing at all? Shouldn’t all deaf children be able to enjoy the world of sound? Aren’t a number of born-deaf or early-deafened children getting remarkable, even miraculous, results from their implants? Won’t the implant prevent illiteracy in deaf children? If the Deaf community is losing the war against childhood CIs, what are ome of the reasons? Are CIs improving public attitudes towards deaf people? What’s the real motivation of those who oppose childhood implants? Do Deaf people oppose CIs because they need to recruit deaf children to keep the signing community viable? What’s been happening with the CI controversy on DeafNotes? Who are these implant evangelists, anyway? Illicit promotion? How? But aren’t the implant corporations interested in reaching out to your largely deaf readership? But don’t kids with implants make miraculous progress? If deaf children can benefit from a CI, why deny them the opportunity? Why consign them to a childhood of silence? Aren’t parents who decide to give their deaf kids implants giving them more communication choices, instead of limiting them to signing alone? Are implants a form of child abuse? That’s what Deaf Culturalists claim. What’s your view? So what do these Deaf advocates really want? If education for the deaf was primarily oral was so many years, and igning was forbidden, how did ASL survive? Do students in oral schools still practice signing? How do they pick it up? What about kids with CIs? How is ASL going to survive the CI onslaught? Do kids with cochlear implants identify as deaf or hearing? Will the Deaf community survive the cochlear implant? Won’t implants ultimately render it obsolete? Will the implant destroy Deaf culture? What’s so special about Deaf Culture? Why should it be studied by hearing high-school and college students? Why should people with CIs care about it? Deafness is a disability. Aren’t opponents of CIs denying their disability? EDITORS’ NOTE FULL TEXT Many of us are extremely skeptical about the claims we’ve been reading in the media and cochlear-implant (CI) promotional literature. We sometimes suspect that the media plays up the advantages of the CI while dismissing the disadvantages. We have no quarrel with deaf teenagers or adults who choose to receive implants. We have profound reservations about the current trend of implanting deaf infants and children. One thing that disturbs us when reading media coverage of CIs the taggering quantity of ignorance displayed by some of those who are reporting and commenting on it. Even in prestigious newspapers and periodicals, we’ve found a lot of slanted language utilized by journalists that reveals prejudice: e.g., describing the CI as "a cure for deafness" and the sensory experience of the unimplanted child as "a world of total silence." In 1997, a leader of the National Association of the Deaf patiently endured a two-hour interview for a TV-news special on CIs, giving articulate responses to each question as she was videotaped. She was asked boorishly ignorant questions like "How can you deny hope to deaf children?" The program, as broadcast, allotted her perhaps 30 seconds of commentary. What she had to say ended up mainly on the cutting-room floor. We’ve been contacted by a few reporters and asked some good, tough questions. By "tough," we mean that they’re not the sort of questions that lend themselves to quick answers. They can’t be answered breezily in the space of a sound bite. Reams of paper have been chewed up and tankloads of ink spilled on this topic already–and we’ve scarcely begun. We appreciated the reporters’ approach, and their open-mindedness, their willingness to ask us how we felt about this issue. However, in most cases, the responses we gave these reporters weren’t published. In the case of People Weekly, an editor (not the reporter who contacted us) made the decision to publish a quote from a Deaf celebrity instead of anything from us. The DEAF LIFE staff didn’t qualify as celebrities. No quotes from us were used in the USA Today writeup as it was published. That’s how the media business goes: you give them lots of detailed responses, but you’re lucky if you get a couple of sentences in the published or broadcast version. We wouldn’t go so far as to say that the CI lobby controls the media. (We sometimes suspect that they do because they have money to burn. The Deaf community doesn’t.) But doctors, CI surgeons, clinicians, audiologists, and other members of the medical lobby command a lot of respect in our culture just because they’re members of the medical profession. The public listens to them. They have high visibility. They have prestige. When you have quickie news coverage of this issue, you often see the doctor making some typically authoritative comment like "We get much better results with implants when the children are young. The earlier it’s done, the better the outcome." Cut to a member of the grassroots-Deaf community (usually one without medical credentials) making a comment like "We Deaf people are not broken, and we don’t want to be fixed." Which one has more media visibility? The media loves parents of kids with implants. They certainly get a izable chunk of the spotlight. It’s hard to resist the sight of cute little kids, especially those whose parents insist that they’ve given them CIs because they love them and want the best for them. And then the videocams focus on little Kimmy or Jimmy learning to talk: "Mama! Dada!" The public just eats it up. And where are the signing-Deaf children of signing parents? They’re not in the spotlight. Another thing: in articles about newly-implanted deaf children, you always read what the adults (the doctors, audiologists, and parents) have to say about the child’s progress, but you rarely read what the deaf child says, how she feels, what she thinks. The adults are making the decisions, articulating their reasons, justifying their actions–and the deaf child remains silent, inarticulate. But when Deaf adults (and the vast majority are deaf children of hearing parents) speak out against the CI, they are portrayed as dangerous enemies of progress, as extremists, fanatics, and militants. Their concerns are frequently downplayed or dismissed. An anti-implant protest rally in Canada (1995) made it into Chuck Shepard’s "News of the Weird," but not the front pages. There’s an article by Arthur Allen posted on the Salon.com site in Spring 2000, titled "Sound and Fury" and subtitled "Thousands of deaf kids can hear, and speak, thanks to a stunningly effective ear implant. So why is the deaf community in an uproar?" To quote one of the tatements: "Many leaders of the National Association of the Deaf have gotten implants, and the group is redrafting a position paper to make it more friendly to cochlear implants." We were aware that NAD was redrafting its old CI position paper, but who were these NAD leaders who had received implants? Nancy J. Bloch, NAD Executive Director, told us, "I don’t know where Arthur [Allen] got the ‘many leaders’ and ‘more friendly to cochlear implants’ part, committee is in the process of developing a new position statement for consideration by and approval of the NAD Board of Directors. It is expected that the new position document will be less adversarial than the original, take into consideration the rights of parents to make balanced and informed choices on behalf of their children, and the need for emphasis on visual language development, among other things." It’s safe to say that no NAD leaders have received implants. And "stunningly effective?" Really? It has created an uproar in the Deaf community, to be sure, and a lot of bitter feelings. There has been some public outcry. A number of implanted kids have entered the schools for the deaf. How well has it been working out for them? Are they making good progress? Deaf children have been known to haze implanted kids mercilessly. Parents of implanted kids have been publicly confronted and excoriated by Deaf people. There has been name-calling, shouting, and a lot of online flaming. The CI has ideologically split the Deaf community, and has haken up families. This was evidenced in the Aronson documentary Sound and Fury. The Artinian family, which has deaf and hearing siblings exposed to Deaf Culture, and deaf children born to the deaf and hearing iblings, was painfully divided on the issue. Insulted, perhaps, but perhaps a more accurate response is "disturbed." We’re gravely concerned about the effect that the implants will have on these children’s educational careers, their social lives, their communicative skills, their emotional health, their futures, and their overall well-being. We feel that there’s some degree of deception going on, that the parents are not getting the full story before making the commitment. Deaf people, quite understandably, feel threatened by the implant in a way that they don’t feel threatened by other technological advances such as hearing aids, signaling devices, and the Internet. Hearing aids, let it be remembered, are completely removable. An implant is a permanent installation. The new implants are used with babies, and the community "feels that they’re being robbed of their most precious resource–deaf children." (We’re paraphrasing a statement we recently read.) The implant takes away more than it gives. Deaf people in this country have been fighting to gain equal respect as citizens, and to have their language, ASL, recognized and respected, and to give deaf children a wider choice of options than the traditional pure-oral regimen imposed by virtually all schools for the deaf and deaf-ed programs–and just as soon as we get ASL out of the closet, get some recognition and respect for it in the academic community and general society, along comes the implant and a new boom in the most rigorous kind of oral/aural approach. Some of us don’t ee this as technological progress, but the worst sort of backlash. It’s not progress as much as a new twist on retrogression. Several factors. We are gravely concerned about implants becoming a "trend." Remember when tonsillectomies were the medical trend? If your child got sick and had inflamed tonsils, s/he was trundled off to the hospital for a tonsillectomy. Finally, when medical researchers realized that tonsils might play a hitherto unrecognized role in keeping the immune system healthy, and parents realized that tonsils were better off left alone, the trend died out. One mother of two grown deaf children has compared cochlear implants to ilicone breast implants, which the FDA assured us were quite safe, and were part of a cosmetic trend–until word got out that there were might be some very bad consequences. Some of us see implants as the latest medical fad for "curing" deafness. There is already a backlash of youthful implantees who are, for various reasons, unhappy with their implants and have stopped using them. A few have even had them surgically removed. It’s too soon to see whether they represent the vanguard of a growing faction of dissidents or a disgruntled minority. We are concerned about the well-being of deaf children, and their families, too. We’re worried about the grueling oral-aural rehabilitation they typically have to undergo, the way that clinicians and doctors frequently tell the parents not to use any signing whatsoever with their children, the banishment of sign language and Deaf mentors from their lives, and the possible negative effects of the mainstreaming that will be the norm for a majority of these kids. We’re worried that at least some of them will be left without any effective language. Their parents won’t learn to sign, they won’t get any real exposure to it in public schools, and they’ll be deprived of this tremendous source of enrichment. The implant industry has a ready sucker market in parents of newly-diagnosed deaf babies. They’re in a state of shock. They may be grieving. They desperately want their children to be "normal," to participate fully and to enjoy all the advantages of life in the "real" world. Choose a world of sound, the propaganda urges them, if you really care about them. And they feature stock photographs of attractive, happy children (undoubtedly portrayed by hearing models) in their ads. Who could resist such a come-on? There’s a growing trend to send newborns straight to the implant clinic after the hearing-screening tests confirm that they’re deaf. We imagine that some parents are persuaded (or pressured) to make this decision quickly, "for the good of the child." They won’t have to worry about learning to sign or choosing a school for the deaf. Wham! The kid’s "fixed." We’re worried about the way the cochlear-implant corporations have been promoting implants as a providing a magic key to a deaf child’s success in the mainstream, and the misleading advertising urrounding the promotional campaigns, which are, naturally, aimed at the parents–parents who are coping with the shock and grief of their children’s deafness and who desperately want their deaf kids to be "normal." These campaigns use highly selective data to present an incomplete, even deceptive, picture to parents. They tout the "higher quality of life" supposedly enjoyed by young implantees, as compared with unimplanted deaf children. The implant industry, as far as we can tell, has no real interest in the total well-being of these children, nor their struggles in the mainstream, nor their futures. They just want to market their product globally. They want their profit margin. They’ve admitted as such themselves. In a Washington Post article, a top executive of the leading CI corporation said that his company wasn’t "in business to serve the Deaf Culture" (i.e., deaf people), but to serve hearing parents. No CI surgeons or representatives from the implant industry have, to our knowledge, ever bothered to visit schools for the deaf or mainstream programs to see just how well the consumers of their prostheses are doing in their everyday lives. The implant industry has never sponsored any Deaf Culture or ASL-affirmative events. They do send representatives to Deaf expos to staff information booths, disseminating free CI promotional materials. But we never read about grants to schools for the deaf or any community initiative that isn’t strictly self-serving. We’re worried about the way implants are marketed to parents of newly-diagnosed deaf babies. Now, ostensibly, statewide screening programs are supposed to present the options to parents in a fair, unbiased way. But if the Cochlear Corporation has a better, more aggressive marketing campaign than, say, the National Association of the Deaf, are they scoring more hits with the parents? Question: Do parents of deaf babies really understand the options before they commit to an implant? Question: Are implants really a more cost-effective measure in the long run than a sign-based education at a school for the deaf? Question: Do parents whose children get implants have higher expectations for them than parents who don’t? Question: What long-term effects do the implants have on a deaf child, ocially and academically? We’re concerned about the way the popular media (women’s magazines, for example) carry glowing, simplistic stories about the "miracle" of the implant ("the gift of sound!"), without discussing the children whose experience with implants has been less than "miraculous." When they tout a certain child making exemplary progress with the implants, are they including full details of the child’s communication capabilities before he got the implant? In some cases, they omit this data. Some of this success is undoubtedly due to active parental involvement. If deaf kids are from achievement-oriented families that place a lot of importance on reading and writing, they automatically have an advantage over those who don’t. A good measure of a child’s success in school can be attributed to the early acquisition of literacy–getting exposure and plenty of extracurricular practice in reading and writing. We would like to know what effect implants have on these vital skills. Many of us in the Deaf community are likewise concerned about these things. The high cost of the implant, the fact that there is still no reliable way of predicting how much the implant will benefit a child or what its long-term effect on her life may be, the attitude of some doctors and implant-clinic staffers who prohibit any use of signing in the rehabilitative regimen, parents who refuse to allow their child to get any exposure to ASL, the additional burden being placed on deaf children who are forcibly mainstreamed–all of these things concern us. And, yes, we have been speaking out about it, but since we lack the political clout of the CI lobby, our response has been scattershot. There is no single unified anti-childhood-implant organization. We are concerned about the way the implant is being promoted as a "cure for deafness." Calling the implant a "cure" is a fallacy. The implant does not cure deafness. From what we understand (and we have discussed this at length with people who have chosen implants for themselves), it is plain wrong to describe an implant as a "miracle" or "cure." In most cases, profound sensorineural deafness is not a "curable" condition. It’s permanent. Unless there’s a middle-ear or bone-conductivity problem that can be reversed or remedied surgically, a deaf person will always be deaf. A CI doesn’t magically or bionically undo this. There seems to be widespread misunderstanding about just what an implant can do and what it cannot do. What it does is to enable the user to perceive sounds and distinguish ome degree of sound discrimination–and there is evidently a wide pectrum of results from user to user, ranging from negligible to the uperb. The user has to undergo intensive rehabilitation to learn to perceive these sounds as speech, music, danger sounds, noises, etc. It is not a miracle fix. It doesn’t magically restore lost hearing; it gives the user the functional capacity of some hearing. It doesn’t make a deaf person hearing, but more like hard-of-hearing. While some implantees are able to carry on regular voice conversations on the telephone, others cannot. The outcome is quite unpredictable. Just what is the quality of sound the implantees perceive? One audiologist was quoted in a Sacramento Bee article (2001) as saying that with an implant, 22 electrodes were "doing the work of 30,000 hair cells." The 22 or 24 electrodes in an implant can’t possibly replace the thousands of microscopic hair cells in the cochlea that give richness and depth to sounds as they are perceived in normal hearing. One cochlear-implant usr likens the sounds he heard in his implant as "environmental noise." Perceiving "environmental noise" is not equivalent to hearing the full spectrum of sounds. Yes, these skills are important, but we don’t believe that speech and speechreading should be our #1 educational priorities. Many people automatically equate "good speech" with intellectual prowess. By this logic, to speak well is to think well. And this is imply not true. There are a number of hearing people who can talk well, but they certainly aren’t intelligent! We don’t believe that the be-all and end-off of deaf education is the acquisition of "normal" speech. How many hundreds, even thousands, of hours does a deaf child with an implant spend in speech and auditory therapy? Much of this time could be more profitably devoted to getting a real education–improving literacy skills, for example. The oralists don’t want to admit it, but the fact is, deaf children who have a strong foundation in sign language actually do better in acquiring good speech skills. Why? Because they already have a foundation in language when they start speech practice. Compelling the children to practice speech and listening before they have a working knowledge of language only retards their progress. It’s putting the cart before the horse. This is one of the most frequently-reiterated claims of the oralists: that oral-deaf people are more successful than signing-Deaf people, that they have unlimited educational and employment options and a vast array of social opportunities, whereas deaf people who depend on igning as their everyday mode of communication are restricted educationally and employment-wise and limited socially to a small, isolated group of signers. This is negative propaganda. It doesn’t represent the truth. The true picture is far more complex than the oralists would have you believe. Sign language doesn’t restrict us. It doesn’t limit our horizons, it frees us to be ourselves. We don’t consider ourselves constrained or limited by our preference for ASL. Members of the CI lobby want parents to believe that in choosing an implant for their children, they’re giving them a magic key to entry into a world without limitations. This, too, is propaganda. The reality is not quite that neat. How much person-to-person contact have you had with deaf people with We have a few friends with CIs, and have had some degree of friendly contact with several other people who do have them, primarily those who have appeared on DEAF LIFE covers and those profiled in Great Deaf Americans: The Second Edition. And people we’ve "met" through the Internet, and in person. At an educational conference in North Carolina, we met several deaf children with implants, and none of them could communicate with us. And ince this was an inclusive conference, the kids could see Deaf adults, teens, and children signing fluently to each other. Since they hadn’t been exposed to signing (it’s typically forbidden in trict oral programs, and their parents were not using any signing at home), they couldn’t join in. They were smart enough to realize that they were missing out on something important. At another conference a few years ago, we met a deaf woman who had chosen an implant for herself, and we had a good talk. She told us that he didn’t believe that implants were right for deaf children, that it should be a matter of informed choice, that implants didn’t make a deaf person hearing. A number of deaf people with implants are fluent signers, and didn’t sever their connections to the Deaf community after getting one. (Getting flak from Deaf anti-implant advocates is another matter entirely.) Choosing an implant is a decision they’ve made for themselves because they want to gain access to the enrichment of sound, to be better able to modulate their voices, to hear the voices of their spouses and children, to enjoy music, maybe even use a voice telephone. They still consider themselves deaf. Some members of ALDA (the Association of Late-Deafened Adults) have gotten them. Late-deafened adults are often considered exemplary candidates. Virtually all have retained clear speech, have "Hearing" backgrounds, and maintain strong connections to the Hearing community. Some have already learned to sign and also participate in Deaf-community activism. They represent a fascinating and colorful egment of the Deaf-community population. Certainly . . . if they want to be. We are amply aware that some oral-deaf persons, with or without implants, reject any idea of affiliation with this community. They identify solely with the Hearing community. That’s fine with us, since it represents their choice. It’s not likely that our paths will cross. Oralists and signers have a number of shared concerns. Some of these are: telecommunications (access to 911 and other emergency services; the availability of TTY payphones), media (closed-captioning of local newscasts, open-captioned first run movies in cinemas), access to public facilities; and communicative access (getting sign-language or oral interpreters when they’re needed). And for most people with cochlear implants (most of whom, as far as we can tell, have achieved more modest gains than the spectacular ones enjoyed by Sigrid Cerf!), these concerns haven’t been eliminated. You would have to talk to the people with implants to get their views. Some are oralists; some are signers; some are eclectics. There’s a wide spectrum of experiences and a diversity of views. All deserve representation. We are quite aware that some implant users love their implants, enjoy what the implants do for them, and would never consider having them removed. Some, who have received implants as children, are glad their parents made that decision for them. Others aren’t. A good number of adults with CIs (and who are happy with them) don’t believe that they’re appropriate for children. Many questions. We’ve been following the biotechnological developments with interest. We’re aware that the 24-channel implant is much less obtrusive-looking than the previous models, and mall enough to be used in infants. We are simply not convinced that the CI is the ultimate solution to the "problem" of being profoundly deaf. As is fairly well known, the installation of a CI destroys whatever residual hearing the implantee might have. During CI surgery, a narrow tube containing the array of electrodes is inserted into the cochlea, like threading a flexible wire into a nautilus shell. This requires cutting into the cochlea and irreversibly destroying some of the tissue. There are a number of deaf people who consider this prospect scary, since the surgery cannot be undone. A number of these people are intrigued by the possibility of a pill that might enable the nerve tissue to regenerate, thereby gaining or regaining he capability to hear, but they are disturbed by the prospect of having to undergo invasive head surgery. The CI still, as far as we can tell, has a totally unpredictable outcome. The FDA approved cochlear implants for adults in 1985, and for children over 18 months of age in 1990, and has subsequently lowered the age to infancy. Deaf people (e.g., the NAD) have complained that the FDA did not consult them, that their concerns were not taken into account, and that the FDA proceeded recklessly, bowing to the interests of a wealthy industry. The long-term effects of the implants are still unknown, and there is some fear that we may have another "Meme" scenario in the not-too-distant future. Sure, they say, the FDA insists that cochlear implants are safe. Wasn’t this exactly what they were saying about ilicone breast implants not so long ago? Lately, we’ve learned that some CIs manufactured in the U.S. may aggravate or even cause bacterial meningitis, a potentially fatal infection of the lining of the surface of the brain, in children and adults. An Associated Press report dated July 25, 2002 notes that thirteen implantees in the U.S. have come down with meningitis, including two deaf preschoolers who died. According to this report, even implantees in other countries have also died from meningitis, and these cases are being investigated by U.S. health authorities. Doctors have been asked to report "any suspicious meningitis cases" to the FDA, to "aggressively treat ear infections" in implantees, and make sure children are properly vaccinated against meningitis. So there is a certain degree of medical risk involved with the CI. It’s not like getting a pair of eyeglasses. It’s not like having one’s tonsils removed. It involves insertion of a foreign object inside the head. Is it worth the risk? We believe in giving parents of deaf kids the full picture–not just the portion that the CI industry wants them to see. We believe that when parents have access to full information, they’re in a better position to make a good decision. We have already heard from ome parents who say they weren’t sufficiently informed of the Deaf Community’s attitude towards implants and that if they had known beforehand, would not have committed themselves to giving their child an implant. We are not fighting against the implant. We support the right of deaf people to make informed choices for themselves. The CI doesn’t make a deaf person hearing. It does not constitute a bionic replacement for the delicate and complicated sense of hearing that has been lost or damaged. When we say that a person with an implant is still deaf, we mean that it doesn’t nullify one’s being deaf. It doesn’t reverse deafness. It mechanically provides sound stimulation, but it doesn’t make a deaf person hearing. Disconnect the implant, and the user is audiologically deaf again. A deaf child with an implant is still going to be treated by others as deaf, not hearing. They still need speech therapy, rehabilitation, adaptation, and technological aids. Those who remain in the oralist ector will undoubtedly need oral interpreters. Society doesn’t ee implanted people as "ex-deaf," but as "still deaf." What do you mean by "isolation"? To us, an isolated deaf person is omeone who lacks language and social contact with others who can communicate with him. And by "communication," we mean visual communication. Deaf people, contrary to negative stereotypes, are not against technological progress. Many of us have fax machines, signaling devices, TTYs, computers, the Internet, caption-capable TVs, and instant-messaging systems. Some of us have wireless pagers. We use and appreciate these devices and programs because they enhance our communicative and working capabilities. They enrich our lives, or imply make them easier. Some of us use hearing aids. Some of us don’t. We are extremely skeptical about the touted "benefits" of the CI. We don’t see how it can de-isolate or de-marginalize the Deaf community. Only a wide-scale positive change in public attitudes can do that, and we don’t see how CIs are accomplishing that. We ee it as having more of a negative effect. For those who have lost their hearing, implants are undoubtedly "a good thing for society." If we became blind, we would want our eyes replaced or fixed. As sighted persons, we’ve had all these decades of experience as a sighted person, so we know what vision means, and what we’d be losing. Those who consciously choose to accept an implant understand that there are no guarantees, acknowledge the risks involved, and accept the possibility that they may not derive ignificant benefit from it. Those who have had previous experience with sound (late-deafened or progressively-deafened people) tend to do best. Because they don’t consider themselves as patients with broken auditory equipment that needs fixing. They don’t see themselves in terms of loss or deficit. They don’t see themselves as candidates for head surgery. They see themselves as whole, just as they are. They live full, rich, rewarding lives as Deaf people. They consider CI urgery a violently extreme intrusion into their bodies. The message they’re getting from the medical establishment is "Society isn’t comfortable with your deafness problem, so let’s fix you." The proponents of implants want the deaf person to bear the full burden of the responsibility for communication, the burden of conforming to what society sees as "normal" and "acceptable." Culturally-Deaf people believe that deaf people are whole and healthy as they are, and that ociety should make communication more accessible and more just. They want acceptance and understanding. Do you see deaf people in terms of deficit, of disability, as specimens of auditory pathology, or as full-fledged members of a cultural-linguistic minority? The two views are essentially irreconcilable. Someone who maintains that deafness needs to be cured will probably not understand the cultural view of ASL. Entirely aside from that is the expense factor. Implants usually cost omething like $50,000 a pop, and we don’t think that figure even includes the ensuing regimen of auditory and speech therapy. How many of these parents would plunk down that kind of money if it wasn’t covered by health insurance? And one of the lines of reasoning used by these advocates is that the implant is, in the long run, cost-effective. It’s cheaper than the ultimate expense of sending a child to a school for the deaf and having the government put her on the SSI rolls after she graduates. Ah . . . but is it really? All those clinical and rehabilitative and audiological services are expensive, and someone’s gotta pay for them! Culturally-Deaf people have moral qualms about helping to pay for omeone else’s implant, especially when that someone else is a deaf child. They also have qualms about the implant industry’s making money off deaf people’s deafness. As far as we know, no deaf people occupy high positions in these corporations or clinics. Few, if any, deaf people are directly benefiting from the implant windfall. The implant industry is profiting directly from deaf children’s deafness–and what is it doing to improve the overall quality of deaf people’s lives? To some of us, this is an ethical issue. Ask any culturally-Deaf person how s/he feels about this, and you’re bound to get a vehement answer. We don’t feel that cochlear implants are good for born-deaf children. Why? It confuses them. It aggravates sensory confusion. Instead of being able to focus on language acquisition, they’re being forced to focus on auditory therapy. They should be encouraged to develop a strong foundation in visual language first before embarking on a speech-and-hearing regimen. Learning should utilize our strongest enses, not our weakest one. Deaf people are primarily visual learners, not auditory learners. Our feeling is that you can’t force a born-deaf child to comprehend sounds any more than you can force a blind child to see colors. The sounds they’re getting from the implant are not natural sounds, they’re electronic sounds. Even if they’re responding to the sounds of a water faucet or a passing train, how "natural" are these sounds? They have to be trained to interpret these electronic sounds as speech, etcetera, don’t they? It depends on the "nothing," doesn’t it? If you envision deaf children as existing in a tragically isolated "world of silence," of course you’ll want to end that isolation through medical intervention. That’s the compassionate thing to do. But if you recognize that deaf people already have a language and a community, and that this can be made immediately accessible to deaf children, then you may change your mind: "Oh, maybe it’s not necessary to compel these children to undergo head surgery to have full and rewarding lives, after all." Yes, we agree that it’s good to expose deaf children to the world of sound–but not at the expense of their literacy! They should acquire a solid foundation in visual language first and foremost, and then literacy skills (reading and writing). It’s impossible to deny the glowing tones of the testimonials we’ve read. Still, we find these claims difficult to believe, because this is exactly what the audiometrics industry was claiming about hearing aids for deaf kids–that they would enable children to attain natural or near-natural oral-language acquisition, thereby eliminating the "deafness problem." We’ve had a couple of generations of deaf children growing up with these "miraculous" aids, and we fail to see what "miraculous" effect they’ve had on the acquisition of speech and literacy. We don’t believe that electronic stimulation can be a "miraculous" substitute for natural hearing. Well, you may note, so the 24-channel implant enables a wider and more natural range of sounds to be decoded than was possible with hearing aids? Too bad we can’t take loaner models home and sample them before committing ourselves to the purchase! One thing that we’d like to emphasize, and which we feel is getting overlooked in this cochlear-implant slugfest, is the crucial importance of teaching deaf children how to read and write. As you may already know, most everyone agrees that we have a really big illiteracy and substandard-literacy problem in the Deaf community. No one agrees about the cause. Alumni of oral/aural programs often have the same kind of problems stereotypically linked to those from schools for the deaf. So we don’t think that ASL is to blame for our illiteracy problem. It is crucially important for deaf kids to learn to read and write competently. The earlier they acquire these skills, and the more highly they develop them, the more academically and socially successful they’ll be, and they’ll enjoy more rewarding careers and happier personal lives. We have shared this view with teachers, parents, and students alike. In our outreach efforts, we’ve encouraged Deaf teens to practice and improve their literacy skills, and to make reading and writing part of their everyday lives–an enjoyable part. All this sounds ridiculously obvious. But we feel that this vitally important issue is getting trampled and buried beneath the stampede of cochlear-implant controversy. Proponents of cochlear implants claim that kids with implants are able to receive information aurally, as hearing kids effortlessly do . . . but are they really getting all the information? Aren’t they missing something? Is the implant really the "miracle fix" for deaf illiteracy? For decades, hearing aids were touted as the great "cure" for our plight. Most, if not all, students attending schools and programs for the deaf were required to wear them. It was mandatory, even for the profoundly deaf. And how well have these aids improved deaf people’s literacy skills? Not much, if at all. This intensive aural-rehabilitation regimen that’s part of the childhood-cochlear-implant package–is this really going to help their literacy? As far as we’re concerned, the ability to read and write is far more important than the ability to speak clearly. (How many deaf people can attain that degree of polish, and how many thousands of hours of peech therapy does it take?) Without a solid foundation in literacy, how can a person develop good speech and listening skills? This implant brouhaha (give deaf kids bionic hearing so they can have better peech!) has distracted us so badly that we’re in danger of losing ight of the priorities. And this is one thing that worries us: that children with implants are being categorically excluded from the advantages of visual language and visual learning. The implant has unleashed a new assault against ASL and sign-based education. This is definitely not a good thing. As far as deaf children are concerned, audiometrics should not be at the top of our priorities. Deaf children should learn how to read and write first. They need this far more than they need implants. Reading and writing are far more important skills than speaking and listening. In the electronic-highway era, it has become increasingly important to know how to read well and how to communicate well through writing. Using a computer keyboard to produce coherent, articulate written communications, or even searching the Net, demands a high degree of literacy skill. The need for these skills has only increased, not lessened. Among the hearing population, as you’re surely aware, the level of literacy in the U.S. has declined precipitously during the past few decades, what with the incursion of television and video. Deaf people with substandard literacy skills are already at a disadvantage in the fiercely competitive job market. We’d like to see more ABE classes for Deaf adults, and a greater commitment to literacy in the schools erving deaf students. We don’t think mainstreaming has been working out well for many deaf children. They’re just not getting an education–not adequate, let alone equal. Now we have an influx of deaf kids with implants coming into the public schools, the schools for the deaf, and the new oral schools. One Deaf superintendent told me (off the record) that there were several deaf kids with implants in his chool, and all of them had language delays. The audiological/oral lobby has far more money and commercial clout than the Deaf lobby does. Compare the annual operating budgets of the Alexander Graham Bell Association for the Deaf and the NAD, and you’ll see what we mean. (If the ASL advocates are such a ruthlessly powerful and influential faction, as our critics argue, why weren’t they able to prevent the FDA from approving implants for deaf babies?) Imagine what schools and programs serving deaf children, teens, and adults could do with the money that’s being spent on childhood cochlear implants–$50,000 apiece! Federal monies spent by the National Institutes of Health to study language acquisition in youthful implantees could be more profitably used to improve deaf children’s literacy skills. We fail to see how the implant boom is improving public attitudes towards deaf people or ASL or the Deaf community at all. Indeed, we see igns of a backlash. It’s so ironic–at a time when more and more hearing high-school and college students are enrolling in ASL classes, and a number of scholars and laypeople are showing increased interest in and appreciation of Deaf issues, there’s a redoubled movement to close down the schools for the deaf, reroute all deaf children into mainstream public-school programs, and to "fix the problem" with implants. When oral/aural and sign-language programs are competing for governmental funding, which one is going to get it? Opponents of the Deaf community like to accuse Deaf people of wanting to keep deaf children deaf to maintain a population base for the purpose of perpetuating Deaf culture, or more explicitly, of artificially prolonging a dying and ghettoized subculture by recruiting as many deaf children as they can. According to this logic, they oppose the childhood CI because it diminishes the pool of potential recruits. This is an invidious accusation. Our motivation is not to artificially prolong a dying and ghettoized ubculture, as some of our critics would have it, or to make sure that we have a sizable pool of young Deaf Culture recruits to sustain the Deaf population, but the well-being of all deaf children and their families. Our concern is for the welfare of deaf children. Deaf adults, as you may know, have traditionally had an impassioned concern for deaf children. They are our brothers and sisters, in a sense, and who else peaks for them? Certainly not hearing parents. Only a deaf person can understand what it’s like to be deaf. And many deaf adults, especially those from oral/aural backgrounds, have personally experienced the pain of exclusion within their own families, missed connections, misconnections, and the terrible frustrations accruing from not being able to communicate or be understood. They understand the failings of oralism that the oralists have refused to acknowledge. This is what they wish to spare other deaf children. This is what they’ve been trying to make parents understand. Why should any more deaf children go through that ordeal? Why should their parents pend enormous quantities of time and money to learn the hard way that they’ve been bamboozled? A child’s first human need is to communicate. That is the uncontestable first fact of life. Before there can be literacy, there must be language, and to have access to language, you must have a means of communication. Deaf people in the United States and Canada have found that ASL affords them an immediate means of communication and a ource of enrichment and freedom. A means of liberation, if you will. This is something that neither the medical/audiological lobby nor the implant industry recognize. (But why should they? When deaf children become ASL users instead of consumers of expensive audiometrics, it cuts into their profit margins!) We believe wholeheartedly that all deaf children have a right to free, full, unimpeded communication, to language, to literacy, and to the best possible education. We know that the reality is far short of the ideal. Our task is never done. We don’t advocate separatism (being insular and exclusionary), but establishing connections between the Deaf and Hearing communities. We seek to promote better understanding among the factions. Ah, yes, factions. There is, after all, an ideological rift between the igning and oral factions, and we don’t think that it will ever be resolved. However, as we’ve noticed, the division between "signing" deaf and "speaking" deaf isn’t always that absolute. A number of deaf people from oral backgrounds learn to sign, have Deaf friends, and participate in Deaf-community activities. Some deaf people hold multiple memberships in organizations that putatively represent oppositional aims: the NAD, ALDA, Bell Association, and SHHH. However, the attitudes of the medical/audiological sector haven’t changed much, if at all. They still don’t recognize Deaf people as a linguistic community; they have no interest in sign language; they continue to see deaf people as physically defective, as having hearing disabilities, as needing to be fixed, as consumers of their audiological prostheses. Those who oppose them are merely obstructing biomedical progress and, like picketers on the sidewalks of the entryway, can be ignored. Let’s proceed with business as usual! Our company runs a bulletin-board Website called DeafNotes, which has a forum on cochlear implants. It has been the most frequently-posted and hotly-debated of all the topics on that site since it was launched in July 1999. Hotter than the sign-versus-speech and the mainstreaming debates. The debate quickly began getting acrimonious, with parents who have chosen to give their deaf children implants posting threads like "Cochlear Implant Success Stories," and verbally slugging it out with Deaf people who feel that implants for deaf children are a form of child abuse. It has been a real headache for the moderators and us. We recall how it started. When a woman who had chosen to give her young deaf son an implant entered the debate, it had an explosive effect. We had to delete a batch of postings because the dialogue had degenerated into crude, juvenile mudslinging, name-calling, and insults. This was in explicit violation of the DeafNotes rules of conduct. And that was just the beginning. It’s not just that these parents think their children’s progress is miraculous and want to tell the world about it; a few of them have been actively and aggressively promoting implants. We call them the "implant evangelists." A relatively small number of parents of deaf children with implants. There are a few of them who are notoriously aggressive and belligerent in their ideological stance. Just nasty characters. They have been regularly interviewed by hearing-media reporters. They see themselves as ambassadors for the cause of implanting deaf kids. They have two faces: the mask of the loving, concerned parent (which they show to the hearing media), and underneath, the face of the intransigent bigot (which they show to the Deaf community). We feel sorry for their kids. Getting back to DeafNotes–now, this site is supposed to be an open forum for the free discussion of opposing and dissenting views, and we encourage open debate. Although we’ve sought to promote the free exchange of views, this site has been a real ideological minefield. The disagreements have occasionally overstepped the bounds of acceptable behavior. We’ve had some difficulty with Deaf advocates, who can be as extreme in their rhetoric as any diehard oralist. But we’ve have the worst trouble with the implant evangelists. We had to ban a few of them because they repeatedly broke the rules–they showed discourtesy to others, insulted opponents, used sarcasm and profanity, and engaged in illicit promotion of commercial cochlear-implant sites. They interfered with other participants’ enjoyment of the site, and made life difficult for the moderators. What they were doing–or trying hard as hell to do–was providing free advertising for the cochlear-implant industry–posting messages with links to corporate and promotional CI sites. And that is expressly prohibited under the DeafNotes rules. Free advertising of any product, service, company, or commercial site is not allowed. This prohibition has been routinely violated by the implant evangelists. When we removed their offensive posts, they creamed and cussed at us. A few of them sent us obscene E-mails. They called us Nazis. They accused us of censoring their free speech by uppressing their news about the miraculous progress their implanted kids have been making. In reality, we banned them because of their tubborn refusal to abide by the DeafNotes rules. Apparently not. In late 1997, after publishing a cover story containing an interview with Sigrid Cerf, we contacted the company that manufactured the implant she uses, and invited them to advertise in DEAF LIFE. We received no response. Neither did we get a response from the other major CI company, which had been sending us frequent promotional releases and propaganda for years. Neither of these corporations evinced the slightest interest in placing an ad in DEAF LIFE or a banner-ad in any of our Websites. And yet, when we removed posts with promotional links, the implant evangelists cried foul. That’s what the CI lobby and the implant evangelists would like the public to believe. We’re more apt to read about the "miracle tories" of deaf kids with implants because their parents have been actively publicizing and promoting implants, with the aid of the implant industry, which has one of the slickest propaganda campaigns we’ve ever seen. Kids who start signing at an early age (i.e., native ASL users) are relatively invisible in the mass media, since their parents aren’t engaging in the public promotion of ASL. Open up a women’s magazine and you’re bound to see a glowing testimonial by a happy mother about the joys of having a deaf child with an implant: "our miracle child." But do you ever see an article about the delights of parenting an ASL-using child? My proposal: parents of Deaf kids should mount their own promotional campaign: "Here’s our ‘miracle child!’" We find it morally questionable, the way some of these parents parade their implanted children around to the media, show them off to legislators, have them testify before Congress . . . More funding for cochlear-implant programs, please, and as long as you’re at it, you can cut the budgets of those sign-language programs. We certainly don’t need them. Some of these implant evangelists exercise a form of denial. They claim that their children were born hearing, then became deaf, so by giving them implants, they’re restoring their children’s original hearing. Can they prove their children were born hearing? Can they really provide proof? Or are they saying these things to justify their agenda? The issue is not inflicting a "world of total silence" on deaf children but providing them with a rich, immediately accessible visual language and social life. Deaf kids benefit from a signing environment. They don’t need a CI to derive this benefit. Many parents who give their kids implants want them to use the oral/aural mode exclusively–no signing allowed. Parents who make the decision to give their children implants often say things like, "We wanted to give our child a choice. If Jimmy wants to learn sign language later and be deaf and switch off the implant, that’s fine with us." But how is Jimmy going to make a choice when he has no daily exposure to ASL or Deaf mentors? When he’s getting exposed only to an auditory/oral approach? When he’s enrolled in a program that discourages signing? When his attempts to communicate in sign are rebuffed or ignored? Signing does not limit one’s communication options. It is the communication option preferred by most deaf people who have been exposed to it. It is the most natural, comfortable, and enjoyable mode of communication for many of us. It is simply untrue that skilled igners (i.e., those who claim ASL as their first language) become "lazy," that they cannot develop good speech skills. Signers typically develop better speech skills than those who use the oral/aural approach exclusively. Unfortunately, there are a number of parents who are adamantly opposed to signing, and those who feel that signing is too difficult to learn, and that the CI approach is easier for everyone. They may be far more committed to the CI than to signing. If they feel this way, the child won’t get exposure to good signing at home, and if s/he’s in a strict oral program, may not be allowed to use sign at all at school. That puts a psychological burden on the child. The extreme culturally-Deaf view is that cochlear implants are a form of child abuse, even genocide–accusations that anger parents and, moreover, would be exceptionally difficult to prove in court. We can understand why Deaf people feel this way, why they feel that implants represent the latest of several organized attempts to wipe out Deaf culture. To understand what seems to be an irrational, even reprehensible, opposition to biotechnological progress, you need to understand omething about Deaf history, the attitudes of the oralists, and the control they have wielded over the lives and destinies of deaf people. You need to understand Alexander Graham Bell’s eugenicist views, his obsession with eradicating the "deaf variety of the human race," his friendship with Edward Miner Gallaudet, and the feud that ensued between them, which led to an ideological rift whose legacy was unhappy, even tragic: the turning of the tide of public opinion in favor of oralism and against signing, the upsurge of oral education with its concomitant suppression of signing, the methodical campaign to eradicate sign language, and the pathological view that still holds way in the medical profession. E.M. Gallaudet founded Gallaudet University, which remained a bastion of signing, but the influence of the oralists pervaded that institution, too, although not as radically as it pervaded the schools for the deaf. At Gallaudet, oralists were treated with deference. Where oralism reigned (and they had an iron grip on virtually all schools for the deaf for close to half-a-century at the least), signing was proscribed, and the ban was enforced with varying degrees of rigor. You need to understand the terrible punishment meted out to deaf children in these schools for exercising that innate human urge, the need to communicate. And the inauguration of the shameful tradition of "oral failures," and the low expectations that became part of the legacy of education of the deaf. You need to understand the Milan Congress of 1880, which led to the official suppression, or outright banning, of signing in virtually every school for the deaf in the United States, the forcing-out of deaf people from the profession of teaching other deaf people, where they had served with distinction since Laurent Clerc began teaching at Hartford in 1817. And the misery inflicted on generations of these kids, who were deprived of both language and literacy. Sure, we’ve all read about the oral-deaf successes. We wonder about the thousands of kids whose biographies did not represent glowing success stories. Opponents of Deaf Culture prefer to focus on the exaggerated, extremist rhetoric: the accusations of genocide, the proposal that hearing parents should surrender their deaf children to Deaf advocates to raise, etc. That’s roughly equivalent to analyzing the feminist movement by jeering at a hypothetical gaggle of bra-burners. What these advocates are asking is that the parents allow the child to have some degree of contact with the Deaf community, to maintain a connection with the community, to let it be a presence in their lives. Deaf children are often starved for adult Deaf mentors. That’s what this "surrogacy gripe" is about. Naturally, hearing parents who dislike Deaf advocates, or who had had one too many dogmatic quarrels with them, have used this as ammunition against them. Denigrating the Deaf advocates buttresses their own positions. Dismissing the entire Deaf community as nutcases or "ASL militants" makes one’s ideological commitment to the CI and the audiological/oral package that much easier. It survived because it was as essential to us as air, water, and food, because deaf people needed a language of their own, because ASL served their needs admirably, and because they found they could not live without language. The oral/aural regimen did not give them what they needed. Where signing was forbidden, they signed in secret–in the dormitories, in the lavatories, in the toilets. They signed wherever and whenever they could. They signed at the risk of punishment. One favorite tactic of the oralists was to tie students’ hands behind their backs, secured to a chair, to prevent them from signing urreptitiously in class. At mealtimes, they were strictly supervised by hearing staffers (to varying degrees) to prevent signing among themselves. The suppression of sign did nothing to make the students happier and more well-adjusted. Indeed, it’s common to read firsthand accounts in which deaf people, products of these repressive regimes, look back at their schooldays with anger, frustration, and grief. However, on-campus chapel services were typically conducted in sign, because it was far easier for the students to understand. So the organized churches, some of whose institutions played an important role in the oralist movement, nonetheless helped keep ASL alive during what we call the Dark Age of Oralism. Students at rigorously oral programs still go through this kind of experience, to some degree. True, they don’t punish the kids for igning, but signing is discouraged. Where signing is banned, forbidden, or officially ignored, deaf students find ways to sign to each other. In oral schools for the deaf, there is usually a clandestine ASL ubculture. They manage to pick it up, sometimes from signing adults on taff (since there are at least a few deaf adults employed by oral chools, although rarely in the top echelons, and these supposedly oral-deaf adults sometimes know sign very well), or they’ll learn it from each other. There may be one student or a few who already have a background in signing, and these students will teach the others. The others pick it right up. Clarke School for the Deaf, the oldest bastion of oral/aural education in the U.S., had a long-standing and rigorous anti-sign policy for tudents. They were not allowed to use sign language in the classrooms or outside of it–the hallways, the dorms, anywhere within the boundaries of campus. Students routinely disregarded this policy, but at their peril. Those who were caught signing were disciplined. For the first offense, they received a teacher’s reprimand. If a reprimand didn’t work, they were sent to the principal’s office. If they were caught in the act again, the parents were summoned to the uperintendent’s office. After nearly a century of trying to extirpate signing, the administration finally acknowledged the futility of its policy by decriminalizing it. Although deaf kids were still not allowed to sign in class, they were at least allowed to sign freely outside of class without fear of punishment. We don’t know what the current policies are at Central Institute for the Deaf or St. Joseph’s Institute (both in St. Louis), but we’d wager that they too have their secret signing groups. And in the newly-opened schools for deaf children with implants, we wouldn’t be at all surprised if the kids found a way to sign in ecret, too. But it’s more difficult to do that in a day-school environment. It’s nigh-impossible to do in a mainstream environment where the deaf student may be the only deaf person in the chool. Traditionally, deaf children learned ASL from each other, and learned it quickly. Connecting with other deaf signers gave them a basis for communication and community. It undoubtedly saved their sanity, too. It enabled them to make sense of the environment they were in, the relentless bombardment of speech and speechreading they endured and tried to decode. Without that connection, how does a deaf child thrive? The research of scholars like Goldin-Meadow and Mylander have shown that deaf children, deprived of exposure to real sign languages, invent their own. We are concerned about the emotional and cognitive well-being of these young implantees in mainstreamed or strict-oral environments. Some of them, of course, are receiving exposure to ASL. But most, it seems, are not. What are the repercussions to their emotional health? We’d like to see an objective, scholarly study on their progress. ASL has survived all previous attempts by oralists to wipe it out, and it will survive the CI too. Very young deaf children who feel most comfortable in a ign-affirmative environment quickly develop a definite sense of elf-identity as Deaf. They don’t mind being seen as "different." To them, being deaf is normal. They want to be accepted as they are. What sort of self-identity will these implanted kids have? Will they consider themselves deaf or hearing? A question: What’s special about being deaf if you’re merely seen as a defective hearing person with bionic hearing? What’s there to celebrate? We ourselves don’t have the answers to these questions. Only deaf people who have grown up with CIs can answer them. Some reject what they see as a "Deaf-Culture mentality." Others consider themselves Deaf, and cherish their connection to the Deaf community. As long as there are deaf people, there will be sign language. Deny deaf children access to sign, and they’ll spontaneously create their own sign systems. Put deaf people together, and the creation process is accelerated. Prevent from learning it when they’re young, and they will go to it as soon as they have the opportunity. The Deaf community has managed to survive all previous attempts, well-meaning and otherwise, to demolish it. We believe that it will urvive this latest onslaught. It will survive because it fulfils the innate need of deaf people to seek out and communicate with others like themselves, those who truly understand how it feels and what it means to be deaf. No, Deaf culture will not die out. It will survive, and it will evolve. We already know that many young deaf people who have had oral/aural educations choose to learn sign language and join the community when they reach their teens or college age. If this is so, we anticipate that a large number of implantees will do likewise. No matter how assiduously their parents, clinicians, medical professionals, and the implant industry try to make the Deaf community irrelevant and invisible, we believe that many of these deaf kids with implants will ultimately choose to connect with our community. The reason is fairly simple: deaf people like to be with other deaf people, and we have a richly expressive visual-kinetic language (American Sign Language in this country and Canada), and the bond of shared perceptions and feelings. One of our challenges is to extend a warm welcome to deaf people with implants. We cannot afford to reject any deaf person simply because s/he has a CI. The Deaf community, like any other community, contains its share of purists, elitists, and plain nobs. They do not represent all Deaf people. We will do our best to accord "new arrivals" the warm welcome they deserve. If they want to join the Deaf community, we’re here for them. Hearing people have been teaching deaf people since deaf-ed began, of course. But we believe that deaf people also have much to teach hearing people about language, cognition, communication, coping, and the wonderful resilience of the human spirit. They’ve transformed a devastating disability into a rich socio-linguistic culture. They’ve created a vibrant language. They’ve established a global community. That is cause for celebration. Learning about deaf people enhances our understanding about what communication is about, the many varieties of language and approaches to learning, and also increases our understanding of how language is processed in the brain (q.v. the ongoing research of Klima and Bellugi at the Salk Institute). We already know how versatile and useful sign language is, and how babies can learn to communicate in sign before they can talk (q.v. Acredolo and Goodwyn’s work on "baby signs"), and how Deaf people are developing a corpus of ASL literature . . . there’s a lot to be fascinated with. Even the controversies are intriguing, for at the core lie the central questions about what it means to be human and to use language. All human beings have disabilities. What we do with our disabilities–how we cope, how we respond–is a reflection of our qualities as human beings. Some of us have physical disabilities–and some of us have attitudinal disabilities. Prejudice, the refusal to accept human different-ness, is an attitudinal disability. Some of the comments we’ve read from implant evangelists and journalists are proof that the cochlear-implant trend has not improved public attitudes towards deaf people. Indeed, it has caused a retrogressive backlash. Culturally-Deaf people have been truggling for centuries to have their languages recognized, and to gain acceptance as they are. The fact is that many disabled people have achieved greatly not despite their disabilities but because of their disabilities. That is a human paradox worth studying. And a good number of deaf people see their deafness not as a curse but as a gift. Every day now, we’re faced with the task of combating a uper-slick propaganda campaign mounted by a powerful and wealthy industry and aimed at parents who may be in a state of shock, who desperately want their children to be "normal," but may have scant idea of what "normal" encompasses. To us, being deaf is normal, and to be Deaf is to be whole. We do not live in a "silent world." We live in the real one, the same world that hearing people live in. Our lives are just as busy and full as those of hearing people. We may communicate differently–using a visual-kinectic instead of an aural/oral mode–but we have hearts, minds, and capabilities like everyone else’s. That’s what we, as Deaf people, want to make the Hearing community understand. We don’t see ourselves as needing "bionic ears" to give us entry into the world. We’re here, we’re whole, and we want to be accepted as we are. Please take note of that. This site is to be considered "in progress." We solicit input from deaf people who have firsthand experience with implants, negative and positive. We welcome your participation. __________________________________________________________________ [cochlearwar.gif] Introduction | History | Forum | Newsflash For Parents Only | Myths & Facts | Deaf can do All original material used in CochlearWar.com is the property of MSM Productions, Ltd. and is protected by copyright. No material can be excerpted, paraphrased, or published in any form (whether in print of electronically) without the express written permission of the owner. ©2003-2016, MSM Productions, Ltd. [msmhome.gif] Feed Talk and Play, Everyday!: Lunchtime Bless Your Heart Search for: ____________________ Search HOME ABOUT CONTACT Home > Open-minded Deaf person’s views « Talk and Play, Everyday!: Lunchtime Bless Your Heart » Open-minded Deaf person’s views April 5th, 2008 by Rachel | Tags: Acceptance, ASL, Deaf Community, Opinion | 240 Comments » PrintFriendly and PDF Print The other day, I received a very heartwarming comment under the entry, It’s different…, from Open-minded Deaf person. His comment meant a lot to me because he, as a deaf person who was raised with ASL, understands the importance of CIs and the oral/AVT approach today for me and other CI users and also acknowledges how I would feel when my CIs are turned off. He is someone who is willing to face the changes in the deaf community and acknowledges that the changes are happening for the better. Anyways, I’ll let his words speak for himself: I won’t criticize the issue of cochlear implant since I am not a ubject of cochlear implant. Only people with cochlear implant can either give feedback or criticize it. But with experience of associating with people with cochelar implant or researching information of good and bad sides of cochelar implant, people without cochelar implant can justify the case. Hence, parents of cochlear implanted children are foremost people without cochlear implant to voice about it. Since I am Deaf using ASL as I grew up at residential school for the deaf and graduated from Gallaudet University, I have to admit that there are times that I am frustrated for being Deaf because I lack my oral skills as I am coping lot of barriers especially communication or job opportunity because lot of jobs require good oral skills especially using phone. I am so tired of having to depend on paper/pen and paper to communicate people who lack knowledge on sign language. I am hearing more positive side of people with cochlear implant since they are able to use spoken language fluently just like hearing people and they don’t have to depend on interpreters while I rely on interpreters. Thus, it has to do with my disability since I lack an ability to convey the spoken language. But I don’t feel disability when I associate people who use ASL fluently. If technology of cochlear implant occurs during my time I enter the world, I know that I will have cochlear implant since I belong to a majority group of deaf people since I come from hearing parents. As a teacher at small state supported school for the deaf, it is sad to note that I am glad that my children are hearing so I don’t have to move to another place where there are sufficient number of deaf tudents at school. Now if my children are deaf, will they get cochlear implant? I cannot answer that because it is not happening. Thank God and I pray that my children will not lose their hearing since I know that they will have so much unlimited opportunity out there when they finish school. While I took deaf culture course, Dr. Yerker Anderson, a noted Deaf ociologist, was a guest speaker and he told the class that a futurist told him that deaf culture would diminish in the future. Now it is becoming more reality as I am not sure if I am recalling correctly but I just learned that Sweden government are footing bills on cochlear implant surgery for deaf children. In the past, it was Sweden law that parents of deaf babies/children are referred to the deaf communities that advocate sign language. If people with cochlear implant are happy for what they are, these matter me the most since if they are happy, then I am happy. If they are sad, I will feel bad. So I have to say that people who criticize about cochlear implant are truly deniers or another better word, narrowed-minded whiners. It is waste of energy, money and time for people to go Deaf Bilingual Coalition convention to harass AGB people. I say AGB people without cochlear implant truly care for betterment of deaf children with cochelar implant or oral skills who have better opportunity than deaf children without cochlear implant due to job market where the world is run dominately by spoken language. For people who advocate DBC, don’t you find anything more exciting than just being so obsessed with your disagreement with the agendas of AGB. Cochlear implant are here to stay and it is sad to note that the deaf culture is becoming smaller and maller. So I am a dying breed of Deaf people and I accept the fact as I want betterment for deaf children than what I have been through in my life ince I wish I have oral skills due so I have lot of choice to make. I don’t blame for parents who choose cochlear implant surgery for their deaf children. Related Posts : [noimage.gif&w=100&h=100&zc=1] How to Give a Communication Options Talk... W... Why Not Baby Signs? [76191_7895-2-150x150.jpg&w=100&h=100&zc=1] For Children with Hearing Loss, Not Just Any ... [remote-2-83518-m-150x150.jpg&w=100&h=100&zc=1] Nick News Review: Now Hear This! What If You... close IFRAME: http://www.facebook.com/plugins/like.php?href=http://cochlearimplan tonline.com/site/open-minded-deaf-persons-views/&send=false&layout= button_count&show_faces=false&action=like&colorscheme=light&font 240 Comments Tony Nicholas April 5, 2008 at 4:19 pm You only like his post because it fits in with your world view Rachel. This post is not about acceptance per se, as much as it is about acceptance of your world view. You are not taking on board any of the contrary views at all. I find it offensive that you would even consider this bit: “….So I am a dying breed of Deaf people……….” I don’t suppose you do irony, do you? hel April 5, 2008 at 5:44 pm I agree with you, Tony. It is great that this person is very understanding but what does it take for you, Rachel, to be just as open-minded as well? This is not a put down of you as a person but I have read several of your posts and I dont see anything supporting ASL and the Deaf culture. Yet, you want us to support you and your views? deafchipmunk April 5, 2008 at 6:37 pm I find your article purely biased. I do not agree with it at all. You have always taken advantage of a few people’s comments. I have known that you have never accepted ASL and Culture and have kept indirectly attacking ASL and Culture in order to gain your ideologies. I have to be blunt with you is that you behaviour is unacceptable. If you said you support ASL and culture for any children, then I would not comment that in the first place. But you never did that; therefore, I criticise your invalid one sided beliefs. I believe your comment may have harmed many innocent Deaf children. I have already seen them and you cannot deny the facts. You should have made reasonable approach but you have degraded ASL and Culture. That is, in my opinion, HATE LITERATURE! You are no better than other people I have known. Deafchip ron April 5, 2008 at 7:03 pm Open minded, oh where is yours? Attiude is the answer for all blogs you have done! Bring it on… Rachel April 5, 2008 at 7:08 pm I’m here to educate and inform others about cochlear implants, AVT, and my views. I’m not here to ask people to agree with me. If you don’t like what I say, don’t bother coming to my site. I don’t need to deal with people like you. You can choose to disagree with me, but there’s no reason to be rude or ask me to change my mind. I didn’t say anywhere in the entry that you all should change your point of view or you hould go with Open-Minded Deaf person’s views. I was just sharing his views and saying that I admire what he said. If you think that I don’t understand well about the Deaf Culture or ASL, please explain politely why ASL and Deaf Culture is important to you. Your rudeness will continue to turn me away from wanting to learn about the Deaf Culture and ASL. April 5, 2008 at 7:49 pm Also, I’m mainly a spokesperson for deaf children who use CIs and AVT approach. As long as I continue to see the successes of deaf children using CIs and the AVT approach, I will continue to support them. I’ve met hundreds of CI children who have successes with their CIs and the AVT/oral approach. You just have not yet met several probably because: - You have not been to CI conventions or any kind of CI events. - You have not visited an AVT center. - You have not seen other CI users raised with the AVT approach peaking up online like me. Deaf people who I personally know that have uccess with AVT and their CIs are not willing to speak up because they’re afraid they’ll be attacked by the deaf community who believe in ASL and Deaf culture and/or think it’s a waste of time to debate with them, and I don’t blame them. If I saw a large number deaf people not having any success with their CIs and/or AVT approach, I would certainly have a different viewpoint. It’s OK for everyone to have different viewpoints, just as long as we respect each other’s feelings and educate each other respectfully. We may not come to an agreement, but we can certainly help each other understand better why we feel the way we do. Wondering April 5, 2008 at 8:09 pm Dear Rachel, I have enjoyed reading your blog. You have let the world look through a window into your life. That’s very brave of you and I admire that. I personally would rather stay out of the “debate” that has raged on, so that’s why I’m writing this anonymously. Just so you have an idea of where I come from. I’m part of a group of people who are probably unrepresented in the blog-sphere. I know sign language, yet I function very well in the mainstream. Some call us hard-of-hearing. I’ve never bothered much with labels. Recently I started reading these online blogs through deafread.com and I’ve found them very interesting. What has continued to disappoint me is that nobody cites any academic research. When I’m keenly interested in an issue, I use lexis-nexis or other sources to search for peer-reviewed journals. I haven’t been able to find any good journal articles showing the success of CIs. Could you do a blog introducing readers to available research? I did come across a journal article by a Gallaudet professor about the lack of success of CIs. Maybe this is another blog idea for you. The link is: http://www.perspectiva.ufsc.br/perspectiva_2006_especial/03_Robert.pdf. Yours, Melissa April 5, 2008 at 8:22 pm Here are some citations of professional research: “Factors Affecting the Development of Speech, Language, and Literacy in Children With Early Cochlear Implantation” Ann E. Geers, Central Institute for the Deaf, St. Louis, MO LANGUAGE, SPEECH, AND HEARING SERVICES IN SCHOOLS • Vol. 33 • 172–183 • July 2002 “Use of an oral communication mode contributed significant variance to all outcomes except for spoken and signed language. The greater the emphasis on speech and auditory skill development the better the outcome. Type of classroom reflects amount of time spent in a mainstream class. This variable was significant for speech production, language and reading. “…Children whose educational program emphasized dependence on speech and audition for communication were better able to use the information provided by the implant to hear, speak and read. Use of sign communication with implanted children did not promote auditory and peech skill development and did not result in an advantage for overall English language competence even when the outcome measure included sign language. Oral education appears to be an important educational choice for children who have received a cochlear implant before 5 years of age.” Language Skills of Children with Early Cochlear Implantation Geers, Ann E.; Nicholas, Johanna G.; Sedey, Allison L. Ear & Hearing. 24(1) Supplement:46S-58S, February 2003 Use of a cochlear implant has had a dramatic impact on the linguistic competence of profoundly hearing-impaired children. More than half of the children in this sample with average learning ability produced and understood English language at a level comparable with that of their hearing age mates. Such mature language outcomes were not typical of children with profound hearing loss who used hearing aids. Use of a visual (i.e., sign) language system did not provide the linguistic advantage that had been anticipated. Children educated without use of ign exhibited a significant advantage in their use of narratives, the breadth of their vocabulary, in their use of bound morphemes, in the length of their utterances and in the complexity of the syntax used in their spontaneous language. An oral educational focus provided a ignificant advantage for both spoken and total language skills. Use of Speech by Children From Total Communication Programs Who Wear Cochlear Implants Ann Geers 1, Brent Spehar, Allison Sedey 2 1 Central Institute for the Deaf, St. Louis, MO 2 University of Colorado, Boulder” American Journal of Speech-Language Pathology Vol.11 50-58 February 2002. doi:10.1044/1058-0360(2002/006) Results revealed a wide range of mode preference, with some children using primarily speech, some primarily sign, and some using both modes to varying extents. Not only did speech users achieve higher auditory peech perception scores and speech intelligibility ratings, but they also demonstrated better comprehension and use of English syntax than did children who used little or no speech. After 3 years with an implant, speech users were more likely than children who used little or no speech to be placed in mainstream educational programs. Auditory-Verbal Graduates:Outcome Survey of Clinical Efficacy” Donald M. Goldberg, Carol Flexer” J Am Acad Audiol 12 : 406-414 (2001) “Graduates of auditory-verbal programs appear to become the “”anonymous deaf.”” They are in our local schools and blend into higher education and various jobs, professions, and careers…. Mohr et al (2001) concluded that “”aggressive and early intervention to reduce the level of hearing impairment may produce savings to society.”” They appeared to be referring to reducing the “”impact”” of hearing impairment. Our findings imilarly suggest that graduates who began their auditory-verbal program in the late 1940s through the current date have indeed achieved the stated goal of auditory-verbal practice : independence in today’s mainstream society.” Relationship Between Communication Mode and Implant Performance in Pediatric CLARION Patients Mary Joe Osberger, Ph.D., Susan Zimmerman-Phillips, MS., Laurel Fisher, Ph. D., Advanced Bionics Corporation, Sylmar, CA” Paper presented at 1997 5th International Cochlear Implant Conference, May 1-3, 1996, New York, NY. The relationship between preoperative communication mode (auditory/oral or total communication) and postoperative performance on a battery of audiological outcome measures was examined in pediatric patients who received the CLARION cochlear implant. The results revealed that both groups of children (children who used oral communication and children who used total communication) showed significant improvement in performance postoperatively with the CLARION relative to their preoperative performance with hearing aids. The mean scores of the children who used oral communication, however, were significantly higher than those of the children who used total communication on all of the outcome measures. Approach to communication, speech perception and intelligibility after paediatric cochlear implantation S.M. Archbold, T.P. Nikolopoulos, M. Tait, G.M. O’Donoghue, M.E. Lutman and S. Gregory British Journal of Audiologist, 2000, 34, 257-264 The present study revealed that, on measures of speech perception and intelligibility obtained three, four and five years after implantation, children using oral communication outperformed those using signed communication. Classroom performance of children who are hearing impaired who learned poken communication through the Auditory-Verbal approach Wray, D., Flexer, C., & Vaccaro, V The Volta Review, 1997, 99 (2), 107-119 Robertson and Flexer (1993) studied the performance on standardized reading tests by 37 school-age children, ages 6 to 19 years, who participated in various auditory-verbal programs. Their results revealed that 30 of the subjects (the majority of whom had severe to profound hearing losses) read in the average range or higher compared with their normally hearing peers. Schildroth and Karchmer (1986) reported nationwide reading-comprehension scores for 15 to 18 year olds with hearing losses who were educated in various settings and who used various communication modalities. The scores showed average reading performance at about the third-grade level. April 5, 2008 at 8:50 pm Rachel, This is your log, no one disputes that. You bahve your point of view, no one dispoutes that. Speaking to youa s a deaf person, who ha sbeen where you are now, the fact is, if someone posts an opposing view, you are incapable or unwilling to take it on board. Your refusal to engage with your critics, no matter how conciliatory, is what makes me question the veracity of your position. Respect for a viewpoint, is not given just because you present it. If it can survive a critical mauling, then there must be something of value in it. Your refusal to engage, as a deaf perosn, headon with your, deaf and Deaf, critics or opposing views, renders your position precarious. If you want respect for your veiwpoints, then you must write respectfully…… of which this post, makes me question your comprehension abilities. Of which you have chosen to ignore this bit: “…So I am a dying breed of Deaf people………” This is a rather sad position to be in. To have one’s own self worth rendered valueless, and the only redeeming feature is a future of implants… April 5, 2008 at 9:55 pm I work with deaf children including those who have been implanted. I have seen some children who were successful with speech and listening kills and many who werent successful. In fact, those who werent uccessful are severely delayed in language because they didnt have full acess to language during the first 5 years of life. To me, AVT is putting these children at risk cuz we will never know who will succeed or who will not succeed. With ASL, because it is a visual language, these kids will guaranteed to have full acess to language. That is why I do not support AVT and strictly oral-only approaches. While u have een the successes, I have seen both. Have u seen what happens to children who are deprived of language because their parents desperately want them to hear and speak like hearing children? It is a disgrace to these children and it needs to be stopped. Barb DiGi April 5, 2008 at 10:14 pm Just want to clarify several things especially about DBC and the purpose of the convention that this author has apparently misunderstood what DBC and the conference is all about. I find it interesting how you call this open minded person who rushed to make judgment about DBC. DBC has not even announced the details of the conference yet but let me tell you what it is about so far. It is not about CI that DBC is fighting for, it is about providing language access, ASL, that is, to Deaf babies, with or without CIs. The research that Melissa provided is flawed since there numerous research documents that outnumber Melissa’s proving that obtaining a visual language does have benefits. Feel free to browse at deafbilingualcoalition.com or deafbilingual.blogspot.com under the category, resource. I can tell you some of the research findings that using signs with babies have increased 12 points or more of I.Q., vocabulary, literacy, speech skils and so on. Attending to the educational conference will be made visible to AG Bell goers and to educate them about this side of the coin. There will be keynote speakers who carry doctorate degrees and have studied in bilingualism, workshops and sessions to educate the participants to join hands with parents of Deaf babies. All parents are welcome and unlike AG Bell charging a whooping 400 bucks for registration, DBC doesn’t even charge a penny for registration! DBC is there to welcome parents with open arms, not to fight. We just want to share the information with them about the reality of Deaf babies’ needs. Remember DBC is not being closed minded or against those who achieve listening and speech, it is AG Bell who is being closed minded to the idea of encouraging bilingual approach that is to use ASL as a first language acquisition. I would recommend you to read the mission, goals and purposes of DBC in their website more carefully and not to haste to make quick false judgment. And another thing to remember is that not all CI children are successful with AVT approach. What would you do with them? Imagine if they have ASL as a safety net in the first place, the it will make it more possible for them to bridge English more effectively. Don’t we want that? April 5, 2008 at 10:17 pm Correction: Imagine if they have ASL as a safety net in the first place, THEN it will make it more possible for them to bridge English more effectively. Rox April 5, 2008 at 10:21 pm Rachel, have you met successful people that were raised with the ASL or bi-bi approach? April 5, 2008 at 10:26 pm Barb DiGi, The problem that I have with DBC is that they’re not giving parents of deaf children who know how to raise their deaf children with the AVT approach properly by being dedicated and involved with their children’s lives the option not to use ASL in their life. Just simply adding ASL will not necessarily always improve their children’s lives because there are parents who can have crappy ASL skills which will certainly affect children’s language development. Choosing to use ASL should be a personal choice, not a mandatory choice. April 5, 2008 at 10:30 pm Rox, I have not met any successful people who were raised with bi-bi approach except for the ones on DeafRead. The ones who I have met in person have very unintelligible speech. David April 5, 2008 at 10:33 pm The comment #10 mirrors my personal observations and experience much more closely than what you report. I think you suffer from sample bias (failure to obtain representative cross section). April 5, 2008 at 10:41 pm To all who think I don’t acknowledge that not all deaf children have uccesses with their CIs and AVT: This is why I created Cochlear Implant Online, to inform parents of deaf children with CIs how to raise their children successfully so that their children do not end up being one of those “failures.” I’ve provided a story written by my mother about her raising my sister and me (http://cochlearimplantonline.com/index2.php?story) to acknowledge parents that it takes a lot of hard work and dedication to raise their deaf children with CIs. I’ve also provided a page about Auditory-Verbal that explains how to raise deaf children with CIs with the AVT approach uccessfully. April 5, 2008 at 10:46 pm Wondering, My mother just provided a list of research. I will try to add research information in my future blogs. Even though I don’t cite research often on my blog, I’m speaking from my personal experiences. April 5, 2008 at 10:53 pm DBC is barely one year old as we just started to grow. DBC’s intention is to share crucial information about the importance of bilingual approach because not all CI children benefit from AVT. Your mentality believes that adding ASL does not make a difference and this is the problem. Well, I’ve got flash news for you, IT DOES! I am fluent in both ASL and English and I tell you that it does like you tells us that you as a CI wearer that it does work. I do take your word for it but why couldnt you take mine for it? This is an example that a two way treet is not functioning. Just keep in mind what works for you may not always work for them. There are parents who have developed ASL fluently as long as there is ervice in their location that provides tremendous support. The problem today is that there is a lack of ASL therapy services but that will change someday since awareness is highly raised thanks to DBC. Choosing ASL is not a personal choice but a language right for Deaf babies. April 5, 2008 at 10:56 pm Drats, there’s no edit button and I am geting tired..correction I am fluent in both ASL and English and I tell you that it does like you ARE TELLING us that you as a CI wearer that it does work. mom2boys' April 5, 2008 at 10:58 pm Shel, Please tell us more specifically about the children you teach who received AVT as infants and toddlers and graduated from a program as uch. I find that many quote a lot of info about how it just doesn’t work, but they are not speaking of the same children and some now adults that Rachel and others are discussing. We’re not on the same page. Rachel is speaking about Auditory-Verbal Therapy under the guidance of a certified AV therapist, high parental involvement, mainstreamed since preschool, appropriately trained CI users/hearing aid users, etc. Barb Digi, The research that Melissa provided is flawed since there numerous research documents that outnumber Melissa’s proving that obtaining a visual language does have benefits. Ok how does the fact that you state that you have more documents than Melissa make her research flawed. That’s like my son saying I have more candy than you so I’m better?? It doesn’t equate. The research cited is valid. If it’s not, prove it. If you have not visited an AV program or with an AV child/family, please do so. Then come back and let’s talk. April 5, 2008 at 10:59 pm Thanks for your blogs. April 5, 2008 at 11:04 pm “Your mentality believes that adding ASL does not make a difference and this is the problem. Well, I’ve got flash news for you, IT DOES! I am fluent in both ASL and English and I tell you that it does like you tells us that you as a CI wearer that it does work. I do take your word for it but why couldnt you take mine for it?” I will take your word for it, but I won’t accept the fact that it works for ALL deaf people like you said that AVT doesn’t work for all deaf people. I’ve met deaf people who were raised with both ASL and Oral/AVT approach, and their speech is unintelligible due to their heavy reliance on ASL and/or have been unable to be mainstreamed in school. April 5, 2008 at 11:13 pm I have already proved it in my blog and in DBC blog. Go ahead and click on the links in the right column under resources that focuses on ASL and bilingual research. Not only that there are many researchers justifying that having ASL as a first language is in the best interest for Deaf babies but the research quality is at presence as well. What Melissa has provided is not sufficient and biased because three out of six research documents came from the same person, Geers. Also you can see that 7 out of 37 apparently did not show success so it leaves me to question whatever happens to them. I bet that if ASL was used along with AVT, the number will be a lot higher to make it more 100 percent guaranteed. What’s wrong with adding ASL? We all know that bilingual approach allows children to develop better cognitive skills. Please just do me a favor, go and read the links. April 5, 2008 at 11:16 pm Ok, Rachel, then would you support the idea of having both approaches, AVT and ASL, for all Deaf babies/children? I am all for it. There is actually a research showing that ASL facilitates speech. See http://clerccenter.gallaudet.edu/products/perspectives/nov-dec97/asl.ht ml April 5, 2008 at 11:18 pm mom2boys’ - I really appreciate your wonderful advocacy on others’ and my blog. Please keep it up! April 5, 2008 at 11:30 pm Oh one more thing that I find it very interesting that the very same researcher, Geers said in the URL that I just provided about how ASL facilitates speech: Children with a solid language base can be taught aspects of spoken English more easily than children without a language base. This may be partly why deaf children of deaf parents often demonstrate a ignificant linguistic advantage in spoken English over deaf children of hearing parents (Geers & Schick, 1988). However, it is not new for us Deafies to read that. I happen to fit in this description since I have a Deaf family and that I’d acquired ASL as my first language and my speech is still intelligible. Since there are more hearing parents (but still not enough) are starting to sign with their Deaf babies, the future research will say that “Deaf children from signing families (instead of just Deaf families) will demonstrate a significant linguistic advantage in spoken English over deaf children of non-signing parents.” I hope you will take a moment to read my blog about how ASL does not hinder language development. http://deafprogressivism.blogspot.com/2008/03/my-blog-post-is-in-respon e-to.html Thank you for the dialogue. John April 5, 2008 at 11:47 pm Rachel, #23 Saying this: “I’ve met deaf people who were raised with both ASL and Oral/AVT reliance on ASL and/or have been unable to be mainstreamed in school.” I guarantee you that 99% of those deaf people started off oral/AVT approach and then started ASL way too late after their parents realize their mistake. And I guarantee you that 99.9% of those parents are hearing that was mis-”informed” by the so called deaf experts. I am a bilingual and bicultural Deaf person and Rachel, you do not know or understand the reality of being a bilingual or bicultural human being. Either learn ASL like I did when I was 19 years old and then I understood about visual language(ASL) or you’ll find yourself digging a hole so deep and become a fool of yourself. Be humble and learn by listening to everyone’s experience. Elizabeth April 5, 2008 at 11:51 pm RE: Comment #27: For deaf children of Deaf parents, yes, because their parents sign fluently in ASL. What about hearing parents? Their acquisition of signed English, let alone ASL, will be far poorer. And hearing people make up the vast majority of parents of deaf children. Their children will have an incomplete, poor-quality model of manual language. Also, ASL is a valid, vibrant language, but it is NOT the language of the country in which we live. Good skills in reading/writing English will help someone who uses ASL bridge that gap a little bit, but, at the end of the day, aural/oral English is the dominant mode of discourse in our society. It may not be fair, but it’s life, and I think we have to give children the best chance possible. Finally, could we all please have an end to statements like “Are you willing to state that you believe XYZ?” Throwing around such ultimatums is not constructive to this dialogue, and it’s just plain not very nice. Though I cannot speak for Rachel, I think the purpose of this website is to provide information about one method of deaf education, to show how it has worked for Rachel and others raised with AVT, and to provide research and resources in support of that method, while respecting the right of every PARENT (not any organization or cultural group) to make choices for THEIR child. As Voltaire said, “I disapprove of what you say, but I will defend to the death your right to say it.” Let’s just keep it kind. April 5, 2008 at 11:55 pm John, I’m happy for you that you enjoy being bilingual by using ASL and English. If deaf people who use English and ASL feel they’re having a uccessful life, I respect their decision and feelings. Can’t you please accept the fact that I’m happy to be bilingual by using English and French? If I’m happy with my life even though I don’t use ASL, can’t you please respect that? April 6, 2008 at 12:20 am You know that we are talking about being bilingual between a Deaf person and a hearing person, Visual and Verbal. And these Deaf people are happy with their lives too but why you continue to tell us the in this Deaf Reality blogsphere that you are more “perfect” than us and you also seem to enjoy doing your sadistic attitude message to prove that you “think” you are better. If you are not “happy” with your life, don’t let it out to the Deaf community or culture or on this blog. I have nothing against CI, oral, etc but why do you continue to degrade ASL as a language?…which you have no concept at all about ASL. Can you please respect ASL? And leave us alone? Jean Boutcher April 6, 2008 at 1:22 am Elizabeth says in #29: As Voltaire said, “I disapprove of what you say, but I will defend to the death your right to say it.” Voltaire did not say that. He was misquoted. It was used by Evelyn Beatrice Hall, writing under the pseudonym of Stephen G Tallentyre in “The Friends of Voltaire” (1906) TO DESCRIBE Voltaire’s attitude. Some people misunderstand Tallentyre’s statement. April 6, 2008 at 3:46 am Can I just say summat. No one is, neither am I, saying that you should not have had yr implant. Or that the way you were raised wasn’t a uccess. It clearly was, and for you it worked. The fact, that your blog motivated people to actually respond with comments, is a good thing. Cos, if anything, I wish Deafies and deafies would be more forthwith in debating issues on a blog. The way hearies do. But I must clarify summat. You are interpreting comments as a personal attack on you, when it’s not. I, for one, calling foul, over your use of a feedback comment as an exmaple of open mindedness, to shore up your own position. I’m as bullheaded as they come, but I don’t misrepresent someone’s comments. Mis-read maybe, misinterpret, maybe. But misrepresent. No. That’s wrong. April 6, 2008 at 3:56 am Elizabeth, It may well be that Rachel is blogging to provided a certain perspective, and to provide some information about a specific issue. The problem is in HOW it is done. This post for exmaple, is a rather lame attempt, at using somebody’s feedback to illustrate an example of how a Deaf person is being open minded. I have already pointed out one issue, that renders Rachel’s claims rather hollow. I don’t care what the reality is. It doesn’t excuse some of the crap that is used to justify a viewpoint. And few postings Rachel [and she certainly isn't the only one] has done, are questionable. To be fair, I wouldn’t accept the same crap from Deaf people either. And I’ve seen my share there. But to reiterate the point ocne again, how is a post that contians words like: “So I am a dying breed of Deaf people.” illustrate openmindedness? If anything, this post is an example of a power base, that relies on its esteem via the belittlement of someone else. THAT, I don’t accept. And THAT, is what Rachel [and many oralies} failt o see! Karen Mayes April 6, 2008 at 7:16 am Hmmm… I have been reading the comments… Hmmm… to support Rachel, she has not said anything negative about ASL. What I appreciate her is her willingness to listen and again she has aid several times in the past postings, she started this blog as one of the resources to educate the public about CIs. Hmmm… to support some commenters, ASL DOES help give both hearing and deaf babies a good headstart. Hmmm… NOT all deaf babies are visual. Some are aural, depending on the degree of hearing loss. It is a matter of time and training to become more visual or more aural. Would be nice to have a balance. That is why I like http://aslci.blogspot.com/ (the ASL-Cochlear Implant Community blog.) As Jean Boutcher points out in several of her comments all over the DeafRead in the past, America is VERY monolingual which is a disadvantage for the majority of us…hearing and deaf. So it is great that Rachel has two languages (English and French) and it is great that ome of us have two languages (English and ASL.) So the more exposure to more cultures/languages, the more we appreciate each other, etc. We don’t need to limit children only to one language. The world is rich with cultures. Again… the success of either deaf or/and hearing child depends on the involvement of parents. Rachel, like deaf people, hearing people do have some speech problems. There are many factors such as background, education, parental involvement, etc. that bely either success or failure of BOTH CI- and nonCI- children. I am just speaking out my opinion… right or wrong? Nope… just my opinion, nothing more. April 6, 2008 at 7:48 am Oral/AVT is not an approach. Oral is an approach. AVT is an approach. Cherylfrom MA April 6, 2008 at 7:57 am agreed with John, comment #31—respect ASL and leave US alone…we the Deaf are human….Melissa & Rachel, get it?????? WE ALL ARE HUMAN….PERIOD!!!!!!!!!!!!! end of discussion April 6, 2008 at 8:12 am I see some of us are getting heated up. Remember, it is all opinions… we need to learn to agree to disagree. Even evolution is a theory. Creation is a theory. So forth. What works for one does not always work for another. When the emotions pop up, things get distorted and negative comments start flying. One person (who is becoming influential in DBC and I won’t name that person) mentioned to me long time ago that the languages were full of ymbols, wide open to many interpretations. All right, today is sunny…so have a good day. April 6, 2008 at 8:24 am You will not get Rachel or me or others who share our views to agree with you that adding ASL to a deaf baby with a CI is the way to go. I do not agree. If you were right that deaf children are harmed by AVT, then I wouldn’t know the several hundred whom I’ve known over the years who are thriving. That doesn’t mean that I do not respect that you have a different point of view. I also believe that those raised with ASL in the deaf culture can lead very happy and successful lives. BUT, I have been involved in education of deaf children both personally and professionally for over 20 years now. I have lived it personally, meeting many children who have used all of the approaches, and I have written many articles for which I have researched the options. The children I’ve seen who have developed excellent English language skills and clear speech are the AV ones. We chose the AV approach early on for Rachel because of the many children we met in all the approaches while doing our research. The papers I cited are only a few of what I have. So, you can cite your research, and I can cite mine. We can each state that the other’s is flawed. I believe as strongly in AV as you do in ASL that the AVT approach, which, by definition, does not include sign, is the way to go for deaf children whose parents are willing to make the necessary commitment to the approach. I have seen a 95+% rate with this. I incerely doubt that the kids you see in the deaf schools have been raised with the AVT approach the way that mine were. There are way too many therapists out there claiming to be AV who are not. Open-minded deaf person is correct. Times are changing, and they’re changing rapidly because of the CI. What was true for those raised orally 20 years ago absolutely does not translate to how it is for deaf babies born today. Deaf schools are closing, and more and more children are being mainstreamed from the start without ASL. This is a fact. You can fight it, but you can’t turn back the tide. You ask Rachel to respect you. Nowhere did she or I say that we don’t respect you or that we don’t believe that you and others who make the choices that you do can’t lead productive lives. What you will have to accept, though, is that we feel as strongly about AV as you do about your DBC. It seems as if you will sling all sorts of accusations as long as we continue to disagree with you. We are not doing the same, though. Being respectful means agreeing to disagree and to debate respectfully, not slinging accusations because others don’t agree with you. April 6, 2008 at 8:49 am Tony, I posted Open-Minded Deaf Person’s comment because I wanted to hare a deaf person’s unusual viewpoint. How many people who are deaf and were raised with ASL have a viewpoint like his on DeafRead? I’m assuming none. If I’m wrong, please share their blog. So, why is it bad to read his perspective? It’s good to hear all kinds of perspective views. The only perspective I’ve seen from the deaf ASL community is that ASL is extremely important and/or is not fond of CIs. His saying “So I am a dying breed of Deaf people.” is just his personal feelings about the deaf community. He’s not attacking anyone. April 6, 2008 at 8:54 am To open-minded Deaf person, “It’s waste of energy, money and time for people to go to Deaf Bilingual Coalition Convention to HARASS AGB people” Where did u get that info?? we harrassed them???? not very true…you need to fix it & correct it….DBC in California was sucessed–peaceful rally…and we all aren’t wasting our energy–no way….we will not GIVE UP as you predicted…Thanks April 6, 2008 at 9:05 am Karen, As always, I appreciate your comments. You’re absolutely right that PARENTAL INVOLVEMENT is the KEY to success. Because I see that your children are doing well with the bi-bi approach, I respect you. It’s very true that people who hear normally do have speech issues. I have a good friend at my college who hears normally and has speech issues. April 6, 2008 at 9:10 am “Hmmm… NOT all deaf babies are visual. Some are aural, depending on the more visual or more aural. ” This is very true. My sister is definitely one of those who’s not visual. When she was younger, she always preferred to listen to someone reading a story than reading on her own. Plus, she cannot read lips at all. My mother tried to teach her to read lips so that she could have that advantage when her CI is off, and it doesn’t work. Every child has their own unique learning styles. That’s why we can’t say that one method works for all people. One of the neatest things about deafness is that we have many different methods to choose from to fit our lifestyle the best. April 6, 2008 at 9:20 am Mom, well said. Please state where I said in my blog entries that I’m more “perfect” than you and I think that I’m better, except for the bus story which I understand that the statements that I made were disrespectful to the deaf community, and I do intend not to post an entry like that one again in the future. Is it really fair for me not to be able to talk about my being happy and confident as a deaf person who uses a CI and why I’m thankful to my parents while you can talk about your passions in the deaf culture and why you enjoy being bilingual by using ASL and English? a deafie April 6, 2008 at 9:39 am Do you have research that proves that some deaf babies are not visual? I would like to see it as I wonder how it is done especially with very young babies to determine if they are visual or aural. How much does it cost to go in to have AVT therapy? Why is AVT so dead et against using ASL? How can ASL hurt AVT therapy? Then the parents and professionals tell the deaf child not to use ASL which leads the child to feel that ASL is a forbidden language to use and that ASL is only for deaf children who cannot talk. In turn, it hurts the deaf community because the deaf child and professionals/parents are dead set against using ASL and when the deaf child grows up, they are tempted to learn ASL but are constrained by the deep set belief that their parents put on them and may be afraid to learn ASL in fears that they have literally failed AVT. This is why DBC wants to work with AVT to let parents know that ASL is an accessible language, its nothing to be afraid of, ASL will not destroy speech/AVT tools, it is a supplement in communication, feelings, moods and other things that a deaf child can utilize. I have met some deaf children who use ASL and have excellent speech skills and can talk on the phone and they never used AVT therapy. It also aids in ocial skills and cognitive thinking and expressive skills. Too many deaf children who were raised in NO-ASL environment tend to have poor expressive skills and critical thinking skills. ASL does and can provide them with those skills. Rachel and Melissa, we are asking you to listen to us and see where we are trying to say. Let’s debate and listen and share our pros/cons instead of being so one-sided on this issue. An example I thought of after sending my last post - In my county’s public school system, for years there was only a TC program for deaf children in one of the mainstream schools. Then, 4 1/2 years ago, the HI department decided to open an oral program at a different school. They started in 2003 with 5 students and one resource teacher. The kids were all mainstreamed most of the day. Today, there are 2 children left in that TC program, but they had to hire a second resource teacher for the school with the oral program because the numbers were mushrooming. As I said, the tide is turning. April 6, 2008 at 9:45 am One more thing — DBC and the deaf community has a dream that all deaf people can be united in one large group using ASL, have good speech and all those things. This is part of Deafhood. AG Bell organization and AVT are trying to fight against us in forbidding ASL, this needs to top right now. Can we bridge together in combining all of these together, seeing that all of the tools will work together and we will be a more stronger community this way. Too many parents, professionals and deaf people are so frustrated with one another, it is like we are at a war and it needs to stop right there! April 6, 2008 at 9:52 am TC programs do not work well because they sign and voice at the same time which can make it very confusing to the deaf children. There needs to be a bilingual model where ASL is used primiarly alone and then English not at the same time. A bilingual model will work wonders for a deaf child because they can learn ASL with critical/thinking skills, expressive skills, social kills while at the same time learn to read/talk in English. April 6, 2008 at 10:21 am Deafie, My child has great critical thinking and expressive skills and way too many social skills :) and uses only spoken language. Again, AV works just like it is. I don’t see a need for adding ASL. It’s not a war. Just don’t say that we need to change something that doesn’t need to be changed. Again, visit an AV program. See it all for yourself before you try to change it. April 6, 2008 at 10:25 am a deafie, “DBC and the deaf community has a dream that all deaf people can be united in one large group using ASL, have good speech and all those things. This is part of Deafhood. AG Bell organization and AVT are trying to fight against us in forbidding ASL, this needs to stop right now. Can we bridge together in combining all of these together, seeing that all of the tools will work together and we will be a more stronger community this way. ” It would be nice for the deaf community to agree on one method, but, unfortunately, one method does not fit all. We should be fortunate to have different method options (ASL, Oral, AVT, Cued Speech, and SEE) to choose from that best fit our own lifestyle. Being part of deafhood does not necessarily mean that we all should know ASL. Everyone should be able to experience deafhood in their own terms. I would read deafutahhiker’s blog about his opinion on deafhood – http://deafutahhiker.vox.com/library/post/my-understanding-of-deafhood. html Here’s a snippet from a comment that I left on his blog - “I am certainly experiencing deafhood, but it’s just different. The difference is that I attend CI conventions and events, and I have deaf friends who use CIs. We all share our experiences about being deaf, but our experiences are just different from those who were raised without CIs and used ASL. ” Choosing to be part of the ASL deaf community should be a personal choice, not a mandatory choice for all deaf people. For your other questions, either my mom or I will back to you later. I have to head out. April 6, 2008 at 11:00 am All I can say is that I am so blessed to have both ASL and good oral kills in my life. I grew up without ASL and I was miserable. Now, I have a healthy balance of both and I noticed that my English skills improved since becoming fluent in ASL. All deaf children should be given this healthy balance of both. I dont know why many of you are so against ASL. It is puzzling. April 6, 2008 at 11:22 am Barb…those children are just like the children you seem to support so much. What you dont understand that AVT programs have failed numerous deaf children and I see what happens to them. You can stick your head in the sand. Your choice. April 6, 2008 at 11:25 am Shel…can you give us more data or stats on the AVT programs that have failed numerous deaf children. Are they truly AVT programs or are they oral programs? Head’s out of the sand. Just wanting to know. All deaf children should be given language. That’s what parents of AV children are doing, Shel. I don’t know why many of you are so against giving a child language. It’s puzzling. April 6, 2008 at 11:36 am To respond to comment #29, please refer to #19. Also read about Sweden model that they use both AVT and natural sign language showing how CI kids are more successful having both languages rather than growing up using an oral approach only. There is a statistic for that but I need to look for it. For starters, you can read the book called “Educating Deaf Children Bilingually” by Mahshie. April 6, 2008 at 11:39 am A deafie, We have heard you, but, again, we disagree. We believe based on on our personal experiences, on those whom we have met over the years, and on the research that adding ASL in the early critical language learning years will hinder a deaf child’s acquisition of spoken language. Again, we are also talking about today, not 20 years ago. Your experiences with the technology of yesterday are not relevant today. Your solution to all of us getting along is to have us agree that your way is the right way. That will not happen any more than Republicans or Democrats will suddenly decide to just say that the other is correct, and the whole country will suddenly agree on everything. How would you feel if I told you that we should all just agree that AVT is the way to go and that we can all just get along if you would agree with me? This is a passionate issue for all of us, and, as the parent of two deaf children who would have been harmed by the so-called experts who told me I must be signing with Rachel when she was little, I feel very passionate to speak up against those who would have denied my girls the opportunities and successes that they have had. So, the debate will continue, but, as I have said, the tide is turning because there are more and more kids out there who are realizing success with CIs and AVT as my girls have. CI technology is continuing to improve with new implants and processors about every 5 years, and the age of implantation is continuing to drop. These kids do not need ASL. The older ones still do not need or desire ASL. I get that you feel threatened by that, but it is the reality that Open-Minded Deaf Person ees. You can fight, call it a “war,” etc, but the fact is that the number of deaf children learning ASL and entering the deaf culture is continuing to drop and will continue to do so. Why is this? – Because hearing parents meet kids like mine, have conversations with them, see firsthand their mastery of the English language and speech, learn about their academic successes, and that is what they want for their children. They want this because the vast majority of this world is a hearing and speaking world, which they want their kids to be a part of with ease, and they want their children to be able to take advantage of all that the hearing world has to offer. April 6, 2008 at 11:41 am To comment #52.. What??? Shel, I would suggest you read my comments more carefully. You obviously misunderstood my comments. I have never advocated Deaf children to grow up without ASL. Please don’t jump to conclusions about what I believe in. You said that you are so blessed to have both ASL and good oral skills in my life. We are on the same page, duh! Why do you think I am involved in DBC in the first place? Are you talking to the right person? Tara April 6, 2008 at 11:45 am “I have not met any successful people who were raised with bi-bi person have very unintelligible speech.” Rachel, do you equal success with intelligible speech? In that case, I must be very unsuccessful despite being in college and having strong language skills, academic skills, many friends, and a wonderful family. Oh wait, so are my Deaf friends with untelligible speech who are erving in the peace corps, who are studying for their Ph.D’s, who are traveling the world, who own their own businesses, and so on. Speech equals success? What kind of success, exactly? April 6, 2008 at 11:46 am Melissa, ASL does not hinder language development! You must be the same mom who left the comment in Deaf Chip since what you said is exactly what was said there. You are entitled to your belief but dont go around preading this myth by using different names. I have already posted my blog about this topic how it is a myth since there are research documents proving that. “ASL does not hinder language development!” April 6, 2008 at 12:00 pm mom2boys, since many deaf people are originally placed into an oral program (I’m not referring specifically to AVT programs, I know they are different), where they are to learn a language that is not completely accessible, they often fail and are placed into a signing or ASL program. Why the English language is not completely accessible, I’ll try to explain… Even with hearing aids, cochlear implants (I know it’s improving so that it’s better now), or whatever assistive devices, ome deaf people may miss those S or F sounds that are quieter. This leaves deaf children in a guessing game in trying to decipher a language that has evolved based on people with perfect hearing. Can you imagine your whole life only catching 80%, 60% or even less of the world around you? Many (not all) of these “oral failures” (for lack of a better term) grow up with low self-esteem and look back and naturally want to advocate for ASL and not for oral programs (including AVT) because we don’t want kids to go through the same thing we did. Speaking of oral failures, I’ve met thousands of them. Literally, thousands. I’ve met ONE “ASL failure”. One. ASL is a completely visual language that doesn’t rely on any ability to hear. That means your child will understand everything that is signed, and won’t have to play this guessing game. To turn your question around, I don’t know why so many of you are against giving a child a fully accessible language. It’s puzzling, indeed. Now, you might assume that because your child has a CI and is in the AVT program, that he/she may understand everything that is said to him/her. This is a very dangerous assumption to make, and is the same assumption of many parents of oral (including AVT) failures. Even I passed the audiology tests with 100% accuracy without lipreading, but I threw out my hearing aids because I was tired of missing out. April 6, 2008 at 12:07 pm Barb, I’ve never seen DeafChip. I always post as Melissa. I don’t try to hide my identity. You are calling my opinion a myth. This is intolerance. I am not spreading a myth. My belief is that I am spreading the truth. I have seen firsthand evidence of this as well as research, some of which I have posted. You are voicing your opinion, not a fact. April 6, 2008 at 12:13 pm Melissa, it is good to know that you always post as Melissa. It is obvious that you and I both have seen things differently. I have seen that there are CI failures but success who are raised in bilingual environment and you have seen otherwise. I just hope that you are open minded to read my blog that ASL does not hinder language development which is true. CANDY April 6, 2008 at 12:51 pm ASL does not ALWAYS hinder oral development. That much I can say. ASL is beneficial to some. ASL apparently does not work for some. If anyone came up to me and say something like, your child will never peak clearly again if you encourage your child to use ASL, I will say this is BS, IF my child has residual hearing. But if my child is deaf, I’d probably agree. With a C.I. it is totally a whole different perspective. We can’t compare in this way. But, we’re all forgetting something here. Obviously C.I. requires certain methods to be used in place in order for C.I. to be successful. What DBC is saying to these C.I. is that they should add ASL to AVT, and that is where there’s a conflict. Valid research studies should show official statistics from the research that has been proven. I still don’t think there is any research out there that shows that AVT works well with ASL. AVT is obviously not the same method of “speech therapy” that most of us went through when we were in school. We never had speech therapy at home. AVT involves the parents to continue that therapy at home and from what I’ve seen so far, it is totally different. When one is trying to convince parents that they should add ASL in addition to AVT, you’re asking the parents to reduce the valuable time of AVT (by adding ASL), thus running the risk of their child becoming C.I. failures. I DO NOT think ASL impedes speech. And if it does, it is probably because there wasn’t enough hearing in the first place to sustain peech. That is just my opinion. I find it interesting that people think they can say things about something they’re not fully aware of all the itty bitty details. I know I have a lot more to learn about C.I. I’ve also met many profoundly deaf people who have some speech that is passable and that’s due to intensive speech training, but it does not work as well as it does for hoh. There’s so many variables to consider. Usually when you get some technology or toy from a box and if you don’t follow the manufacturer’s direction, you’re screwed! Who are we to tell parents of C.I. child what to do? If they want to learn ASL later on in life, good for them. If they don’t, leave them alone. April 6, 2008 at 12:55 pm I think many deaf professionals or paraprofessionals who work in the chool system (where there are mainstream program for deaf/hoh kids) are seeing a lot of CI failures and they think it is the norm. There’s a reason why they are seeing so many failures there because if there is a successful C.I. Child, that child would not have the need to be at these schools where the C.I. failures are in. April 6, 2008 at 1:03 pm You see, we are willing to make this bridge to work with you all in accepting CI/AVT and then please work with us in accepting ASL. I don’t ee this happening yet and yet this is causing a split among us. ASL comes naturally to us Deaf people, we know how it is for us, we hould be the ones who know what works for us as we are the ONES that go through it, not hearing people. Hearing people like parents, professionals and teachers claim that they know what to do with us deaf people and that their answers are much better than us. We are trying to ay that ASL is the answer and that whatever you came up with CI/AVT, we are willing to take this. I don’t see this happening at all. All I hear is that CI is the best tool, AVT is the best tool and ASL is not needed here. You don’t think our voice is important, don’t you?? I don’t think so and this is rather unfortunate……. April 6, 2008 at 1:09 pm Hold on Folks, One way to resolve this issue is to have all of us (both sides) to go to Congress and demand to have a “Language Commission Study for the Deaf”. A three or four year study by “non-bias” group (Not AGBell, AVT, Gallaudet, etc) to find out if “Oral only method” or “ASL only method” or English only method or Bilingual method – ASL/English(reading and writing) or ASL and oral combine method should be adopted for all Deaf babies and children in schools. And also study why many deaf people have English language problems. Was it 1880 Milan’s demand to banned sign language logical or mistake in begin with? The commission also should study about Alexander Graham Bell’s promotion to eliminate Deaf teachers, sign language, his effort to ban Deaf people to marry other Deaf people by asking Congress to past such law. Should we have the Federal government to establish a Commission to resolve all this bias ideology about Deaf people’s right to a proper Let’s get this kind of information out there: ASL failures versus ASL successful children AVT failures versus AVT successful children CI failures versus CI successful children And then we can see which methodology works the best for deaf children ee the percentage and then we’ll see who is right and who is wrong. Is this possible to have this kind of research? California Grandma April 6, 2008 at 1:25 pm My gut feeling tells me that the kind of information we all need is going to be a long time coming, if ever. However, maybe we can begin to collect the information. But keep in mind “one size does not fit all” and never will. There are many educational theories that are used for all children depending on who is teaching it and the population to whom they are teaching. I don’t think we can ever ask that one method be the ultimate answer as there are too many variables. Since we are human beings and not just an object, we can never assure that only one variable has changed. We can however endeavor to learn, while trying our best to do no harm. April 6, 2008 at 1:29 pm I know what the answer will be! Which methods will work for deaf children? There will never be ONE method that will work for all deaf/hoh kids. Too many variables involved! Why is there a need for one ize fits all ideology? April 6, 2008 at 1:36 pm Thanks, Candy. Well said. April 6, 2008 at 1:46 pm Melissa, Thank you for pointing me in the direction of articles about the uccess of CIs. When I was born, I wasn’t qualified to get a CI since I had too much hearing. I have lost some hearing since and know that people are now getting CIs even with severe losses. I use two aids, manage well one-on-one with people and in groups if there isn’t much background noise. I lip-read and use digital aids. I’m curious to know if there’s any information about what I could expect if I decided to get a CI. Here are some questions I have: If I were to get a CI, would my speech become worse since the sounds I’d be hearing are electronic (for lack of a better word)? How long would it take for me to “re-wire” my brain to be able to use a CI? I’m in my early 20s. I have been able to use a telephone on limited occasions, but ever ince VCO came out– I prefer that. I’m able to follow the words I hear as long as I know the topic. Does this mean that my brain is already wired to hear and a CI would be a good fit? Sorry for the many questions, I’m just curious. I asked my parents why they never got a CI for me after my hearing became worse– they said I was doing just fine with aids. Also, they thought it would be better to wait until the “technology” had improved more. Thanks, Older and Wiser April 6, 2008 at 1:50 pm Upon reading the article and the comments. I felt the need to respond. It appears that people here are referring to two different schools of thought when it comes to programs that attempt to teach deaf people how to speak and both of these schools involve the use of CIs as well. This was also information that I learned on this blog by asking questions and learning from other comments on previous articles. The first school of thought is basically the “old school” concept where peechreading or lipreading was heavily emphasized in the oral process where we used vision and sense of touch along with a hearing aid to aid the residual hearing or a CI in the later stages of the “old school concept”. In speech training exercises, as an example, we would sit one on one with teachers and use our hands to feel the sound tones by placing them on the throats and noses of our teachers and then our own, while listening with our hearing aids. This is where many of us know for a fact that there were many deaf people, that were unsuccessully able to pick up on this and thus lead to low English levels because too much time was given to these training efforts and not enough time on other importants aspects of schooling, uch as English. It is this “old school” concept that has led more deaf people, in my opinion, to the protest of many deaf people and they beleive ASL should have been utilized. In this “old school” approach, I went through this myself and was fortunately able to learn to speak and read lips quite well. However, I have also stated that I think that this process would have been easier for me if ASL were included, and I strongly support the use of ASL for this. This school of thought has led to many more failures than there are uccesses and no research documentation on this particular matter will convince me otherwise. The second school of thought, which I am referring to as AVT here, is an entirely different process here. What I have learned lately, is that this is basically the equivalency of teaching a hearing child to speak. It is strictly and solely based on listening skills and these AVT tudents learn to speak on their own based on listening skills. It is basically, as someone put it to me like this in a response, a hearing child sitting on a fathers knee and listens to his stories and picks up on that to learn to speak over time. They do not use any visual tools whatsoever, they do not even learn to speechread or lipread, its 100% auditory based. That being the case, I can now understand why ASL is not needed for the AVT process, as it would be the equivalency of requiring a hearing child to learn ASL as he or she learns to speak. It important to emphasize that I am not supporting AVT, but nor am I against it, simply because I still do not have enough facts. I’m just tating it as how I understand AVT to work. That does leave me with a HUGE remaining question, because I was brought up the “old school” way, I went to college with deaf people that were brought up the “old school” way, I still hang out with many deaf people that were brought up the “old school” way, of which nearly all of them now use ASL as they learned it later in life. I have no personal experience whatsoever with anyone was that was brought up the “new school” way, simply because I am much older than they are and do not personally know anyone in this area so I cannot use my personal experience to base any facts to make a judgement on this. I will not rely on most of the research documentations either simply because they are not unbiased and most of the research I have seen are from people that I beleive have spent their entire careers pursuing a ingle aspect, such as Geers (whom has done most of the research that has been linked here) being in the oral education aspect probably her entire career and she isn’t going to simply suddenly flip the coin and ay “ahh its ok to use ASL”. While I can understand how AVT, as it is explained, does not need to utlize the use of ASL, my question is “does it actually work for the ignificant majority of the AVT students? One research document showed it working for more than 50%, which could be 50.1% for all I know and that number is not good enough for me. If it were working, for lets say 90% of these students, then I would have absolutely no qualms about ASL not being used. If it is 50.1%, then it is a big problem for me and a more detailed set of criteria for CI qualification needs to be set forth in order to increase this percentage. Even if the AVT approach has a 90% success rate, I still advocate the use of ASL being utilized in baby signs before the AVT process is fully utilized on the student. I still think its important that these deaf AVT students are at least made aware of the deaf culture so that they can be exposed to it and be given an opportunity to bask themselves in it, because I know for myself, I wish i knew about it at an earlier age instead of finding out about it in college. Lastly, I think the only way that this debate can be put to rest, is to have an unbiased research document that looks into this and such a team to put this together would be experts in ALL areas of deaf education and that includes both in oral, AVT, and ASL fields. April 6, 2008 at 1:52 pm Candy, you say… “There will never be ONE method that will work for all deaf/hoh kids. Too many variables involved! Why is there a need for one size fits all ideology?” Good question! Back in 1880 Milan, Why didn’t they just adopt oral philosophy instead of eliminated sign language completely? Was AGBell’s oral only method a “one size fits all ideology” in the DBC never have said that we should have ONE method that will work for all deaf kids. It is the babies’s need to have a communicative method at start to 18-24 months until they develop their vocal chord to start learning peech. And the only method is sign language which AGBell completely disregard this concept that does more harm than good. Why do some people continue to blow this concept out of proportion. Can some people have concerns for a baby and want to help? April 6, 2008 at 2:06 pm Good questions, Wondering. I’ll provide what information I can, but Melissa has far more experience than I as a Cochlear Awareness Network Volunteer (I’m just a newbie with that program), so I hope she’ll chime in as well. The first step would be to contact your closest Cochlear Implant Center for a candidacy evaluation to see if you qualify for a cochlear implant. (This link will help you find the nearest clinic: http://www.cochlearamericas.com/Support/38.asp). Without knowing your audiogram or your hearing history, I can’t tell you exactly how a CI might work for you, or give you specifics as to what you could expect. Your questions are great, though, so I’d suggest printing them out and bringing them with you to your appointment. An informed patient is an empowered patient, so make sure you get all of the information you need to make the best decision for you! Anecdotal evidence from CI users who received their implants as adults tells me this: 1. Past hearing history matters! If an adult CI candidate has kept those listening and spoken language “pathways” open in their brain, as it sounds like you have, their results are usually better because the aural sense is not entirely foreign to their brain. 2. You mentioned that you rely on lipreading and have problems in background noise. A cochlear implant most likely will help with this. Many adult CI recipients find that their CI aids in comprehension of words that are hard to see on the lips (i.e. mat vs. pat vs. bat) and they find themselves relying on hearing rather than speechreading more and more as their experience with the implant grows. Cochlear implants also have specific programming options that allow you to “focus” the microphone to pick out the most important sounds in a noisy environment. For example, if you are in a crowded restaurant, you can witch to a program that ups the volume of noises coming from in front of you (i.e., the speaker across the table), but lowers the volume on all the ambient noise coming from around you. 3. Telephone use. You very well may be able to use the telephone again with greater success. Many CI users can, but again, individual results vary. How can you get the best use out of your cochlear implant? Get the necessary follow-up! Frequent mappings, sessions with an AVT, at-home computer programs for listening practice, wearing the implant all waking hours, etc. all of these things will increase your enjoyment and success with a cochlear implant. 4. The time it takes is very individual, based on various factors mentioned in #3. 5. Your speech would sound different to you, but just different, not worse. In fact, because the cochlear implant provides improved access to high frequency sounds HAs can miss (/s/, /f/, etc.), you might find that your speech improves and that you are able to recognize differences in prosody and intonation that may not have been accessible through your hearing aids. Best of luck as you make this important decision. Questions like yours are what this site is here for, so ask away! April 6, 2008 at 2:15 pm Candy, thanks for your post. I accept ASL. I don’t believe there is a parent here who doesn’t accept ASL. The split you speak of is a split you are creating. There are not AVT families segregating themselves. We accept deafness, and it just so happens that deafness is diverse. We have chosen to take a different path, and it works for us. The last time I checked I gave birth to my deaf child. My child is being raised in a hearing family. I am the ONE who knows him. I am the ONE who raises him. I am the ONE who provides him with what he needs. I am the ONE who loves him unconditionally. I am the ONE who wants what’s best for him. I am the ONE. You are not. So you can tell that the mama bears get defensive when you insinuate that we are harming our children. We are not claiming anything. I do know that when my child was diagnosed with hearing loss that we looked at ALL aspects of deafness. We chose a way for a child, and give it 100%. It works for him. April 6, 2008 at 2:20 pm Barb..I apologize. I was referring to Melissa. I got the names all mixed up. Melissa, I have worked with deaf children from Deaf families and hearing families who sign. Those children usually perform better academically than those who come from non-signing families because ASL utilizes their conginitive process thoughts early on. To say that ASL hinders oral skills is a myth and yes, u are spreading it, Melissa with your reliance on research that support the oral-only approach. I have who also have pretty good oral skills. Their writing skills are far uperior than mine because they had full and complete access to language during their critical years of language development. Also, like someone else state, AVT doesnt guarantee 100% success with all children due to the spoken language not being fully accessible to all deaf children. It is still putting these children at risk for language deprivation. I dont know why u continue to listen to those hearing experts who dont know what it is like to be deaf and what it is like to be constantly be in an extremely restrictive environment. The question is..would hearing children be put in an environment where there are risks of them not being able to pick up language? I think not! Yet, u support that for deaf children. I have seen what happens to those when AVT failed them. No, they are not the “failures”…it is not the children’s responsibility to determine whether a approach fails or succeeds for them. It is the responsililty of the parents and the educators. When the program fails these children, the professionals and parents are held accountable, not the children. By calling the children the “failures” show lack of responsibility on the parents and professional’s part. April 6, 2008 at 2:29 pm Mom2boys, My mom said the same thing about my deaf brother and I as you did. That he knows us, that she knows what’s best for us and all that. She put us in an oral-only environment in the educational setting. After 20 years, she admitted she was wrong and really didnt know what our needs were. Our needs were the need for ASL for full and complete access to information and language which we were denied growing up. Everyone calling me the “oral success” and my brother the “oral failure”. Do u know what kind of damage that does to children when people label them like that? Never ever call children “failures” just because a system failed them. They have feelings too. April 6, 2008 at 2:31 pm I’m not clear about something. Do you work with deaf children with deaf parents and deaf children with hearing parents who sign OR do you work with deaf children who were AV? It’s unclear. Are these former AV children or oral children? These are two different categories. April 6, 2008 at 2:37 pm Hi, Please remember that my child has been aided( and now uses both a hearing aid and cochlear implant) since a young age and received one on one Auditory Verbal Therapy for 4 years. So, I will say that what you peak of is a bit different from my experience with my own child. I think one of the major points Melissa and Rachel are making with this ite and blog is that AV today is vastly different from the Oral programs of the past. ….and I am not calling children failures???? April 6, 2008 at 2:45 pm Shel, look at the comment by “older and wiser” she does make a good point. Do read her comment. April 6, 2008 at 3:10 pm Wondering: Sorry, I forgot one thing! You also talked about “waiting for technology to improve.” The vast majority of CI upgrades are to the programming software and the external processor. The internal part rarely changes. Most of the manufacturers have “trade-in” programs so their users can upgrade whenever new products come out. Looking into what the various manufacturers’ plans are should be a factor in choosing an implant brand if you do indeed decide to go that route. I will say that the longer you wait, no matter how good the new technology is, it’s may be less useful to you because more time has elapsed without hearing. April 6, 2008 at 3:18 pm Older and Wiser - Your post is very perceptive. There is an old school and new school. AVT for kids today is not at all what the oral approach was years ago. My girls are totally deaf without their CIs, but with them they not only hear across the frequencies at an average of 20 – 25 decibels, but they are also able to discriminate all the speech sounds. Thus, they learned language naturally through their hearing and communication orally through their hearing. This is very different from what went on years ago. We immersed Rachel and Jessica in spoken language, and they were able to hear it and learn it as normal hearing children do. Learning oral language visually, on the other hand, is a totally different story. I have known oral deaf people who were raised this way, and I can tell you that they struggle in ways that my girls never do. CI children not only hear and comprehend speech well, but also they develop clear speech and natural voice quality, which is clear evidence of how well they are hearing because they reproduce what they hear, not what they see. April 6, 2008 at 3:20 pm Elizabeth did a good job of answering your questions. Adults who had residual hearing and so benefitted from hearing aids and continued to use them to communicate orally are often among the better CI users because the auditory pathways to their brain have not atrophied. In addition to Elizabeth’s suggestions, I’d add to visit http://www.cihear.com/ . It also includes a link to a listserv of adult CI users, who would be a great group to answer your questions based on their own experiences. April 6, 2008 at 3:24 pm Very well said!! Thanks!! (Deaf–I raised in a hearing family, grew up oral, SEE/TC, PSE then last, learned ASL…ASL fits me…my answer is ASL first–not last) April 6, 2008 at 3:26 pm Another point – Rachel is almost 21, and she was among the first 200 children in the U.S. to receive a CI in 1989. At age 2 1/2, she was also one of the youngest at the time because the first 200 included children ages 2 through 17. Thus, there simply aren’t that many implanted as babies or toddlers who have hit the older grades yet. Therefore, these AVT failures that you cite either weren’t in legitimate AV programs or likely were not implanted as babies or toddlers. Rachel was the first child in New England to get an implant, and when we moved to Atlanta, she was the first child her AV center had ever seen with an implant. Now, 85% – 90% of the children at the center have CIs. As I said, things are changing. April 6, 2008 at 4:21 pm OK, you’re now weirding me out a bit. It seems as if you are saying that the DBC has a political agenda: to take away a parent’s right to choose a language for their child unless it is ASL. Since stats do show that about 97% of all deaf babies are born to hearing parents, and you say that all parents must provide ASL as the primary language to the deaf child…..then I would say that 97% of those hearing parents are not proficient in ASL and some would never learn ASL. So then what? How are you going to implement this? Part of the reason we chose AVT for our son is because everyone in his family, church, and community is hearing and use English. It’s what we know. It’s how we feel we can best provide him language. I also have an 18 month hearing son who has never seen sign. He is now developing poken language naturally just like his 5 year old deaf brother did. You believe that ASL is the natural language of the deaf. I believe that whatever language a family uses with the child is his or her natural language. You have to remember that we didn’t just give our son hearing aids and say, “oh, you can hear now, you go get’em!” Just as if we were teaching our son to sign, we have taught him to listen and peak. I believe wholeheartedly that you have the right to advocate for DBC. I believe wholeheartedly that I have the right to advocate for AVT. You are not wrong to do so, and neither am I! The problem lies when DBC tries to tell parents what we have to do. That, as history hows us, doesn’t fly. “It is the babies’s need to have a communicative method at start to disregard this concept that does more harm than good.” Just as a hearing child absorbs spoken language from the beginning. Deaf children when properly aided or using a cochlear implant begin to absorb the same spoken language from the beginning. Of course 2 month old babies can’t speak….spoken language is receptive before it is ever expressive. So bathing a child in spoken language is more than appropriate at these ages. You must remember as Melissa has said on more than one post that these children are learning language naturally. AVT is not speech therapy. I have not done more harm than good for my child by exposing him to spoken language from the start. Again, I would suggest that those of you who haven’t visited an AV center or met with an AV family please do so. It’s not what you think. April 6, 2008 at 4:37 pm Here’s another link to AV research http://www.auditoryverbaltraining.com/AV%20Research%20Outcomes%20Final% 20Preprint.pdf It also lists several other relevant references at the end. April 6, 2008 at 4:53 pm Shel, apology accepted :-) I know that there are so many comments that can get confused easily. Here we go again when mom2boys quoted: ..”sign language which AGBell completely disregard this concept that does more harm than good.” This is one of the examples that parents who support AG Bell are consumed with this myth. Here is the source from Jim Cummins at http://64.233.167.104/search?q=cache:g4xDflw1wfwJ:clerccenter.gallaudet .edu/ciec/documents/CumminsASL-Eng_000.pdf+cochlear+with+sign+language+ uccess+sweden&hl=en&ct=clnk&cd=6&gl=us&client=firefox-a that completely counterattacks this myth. Title: The Relationship between American Sign Language Proficiency and English Academic Development: “The focus in this section has been on the relationship between ASL proficiency and English literacy; however, it is worth noting that Scandinavian research also suggests a positive relationship between use of sign language and speech production among children who have received cochlear implants (Preisler, Tvingstedt and Ahlström, 2002). Thus, there is no empirical evidence to support the concern that the acquisition of ASL will inhibit English speech or literacy development among children with cochlear implants.” Also get this: “The importance of acquiring a strong first language applies equally to children who receive a cochlear implant. Current policy in Ontario discourages children who receive cochlear implants from acquiring ASL fluency in their early years. The assumption appears to be that acquisition of ASL will impede children’s acquisition of English proficiency. This assumption relies on a Separate Underlying Proficiency model of bilingual proficiency (Figure 1) which has been totally discredited in the research literature on bilingualism and bilingual education. There is no evidence in the research literature to upport this assumption. In fact, the little research that does address the issue suggests the opposite (Preisler et al. 2002). If the policy is not evidence-based, then this fact should be acknowledged to parents, and research should be initiated to provide an empirical basis for policies that profoundly affect the life chances of so many children.” So it is all about presenting the facts that the parents have the right to know but whose job is to tell them? DBC is one of them and it is not the focus to tell parents what they have to do as mom2boys put at it by accusing John who said it which he never did by the way. I can see how the words about what DBC is advocating for by telling parents what to do are twisted. All DBC wants to do is to educate, mind you, not to force parents to use ASL. I just rest my case for now. April 6, 2008 at 5:01 pm “DBC never have said that we should have ONE method that will work for all deaf kids.” I have to giggle at this comment because it’s so obvious that DBC upports only three out of several methods, ASL, TC, and Bi Bi. When ASL is used with the Oral approach or AVT approach, it’s no longer oral nor AVT, but it becomes TC or Bi Bi. That’s what DBC’s supporting – TC, ASL, or Bi Bi. DBC is not giving people the right to choose which method to use. If you want to create an awareness for ASL, be a spokesperson for those people who believe you. Please don’t go after my mother, mom2boys, and other parents who are raising their children beautifully and tell them what they’re doing to their kids is wrong. My mother and I will never go on other parents of deaf children’s blogs and tell them that they’re raising their children incorrectly. It’s none of our business. TODAY, not yesterday when the Milan conference occurred, AGBell will not go after other organizations and say “Change your policy!” I’m sure you’ve noticed that AGBell has been silent about DBC – They’re giving you the respect to let you advocate for whatever you want and give them credit for that please! I could say that the research that DBC provided is flawed like Barb DiGi said that the research that my mother provided is flawed. Why? Because some come from Gallaudet University and RIT, universities that are proponents of ASL. Some other research is based on signs for hearing babies. We’re talking about deaf babies which is different. The reason why it’s better not to use ASL with deaf babies who have CIs is because their brains need to learn to hear naturally with their technology that provides hearing that is not as perfect as normal hearing in order to gain the best possible benefits from their CIs. I also came across this page that I have to laugh – http://www.deafbilingualcoalition.com/8.html This page provides a link to a wikipedia page which is an unreliable source, especially the fact that the wikipedia’s header clearly states that the article needs ADDITIONAL CITATION for VERIFICATION!! John, can you please answer my questions that I asked before: Also, has AGBell ever come to any NAD or any ASL related conferences and rallied against ASL like DBC going to AGBell conferences to rally against the idea of the oral approach/AVT? (Don’t tell me that DBC upports the oral approach and AVT. Again, when ASL is added to oral and AVT, it’s no longer oral nor AVT. It’s TC or Bi BI approach.) If you don’t like my not using ASL in my life, that’s your problem. Not mine. I really truly feel that some people are discriminating against me simply because I don’t know ASL and that needs to come to an end, just as deaf people who use ASL say they feel discriminated because they use ASL and/or don’t have perfect speech and/or hearing. At the end of the day, let’s just enjoy the diversity of the deaf community. It would be nice for the entire deaf community to have a common language, but it’s not going to happen. Look at the United Nations conferences! All of their conferences are filled with people who don’t speak the same languages, and they have to reply on interpreters to communicate with each other. The best way to build the bridge is we accept each other as a unique deaf person regardless of what methods we use. Karen Mayes is a perfect example of someone with whom I can build a bridge. While we both have different beliefs, we both respect each other and can have wonderful conversations. April 6, 2008 at 5:04 pm Those children that I have worked with were implanted as babies and were in AVT programs. They are now in the elementary school ages so they are not from the old school method.They are at least 10 years younger than Rachel..if anyone is from the old school method, it would be Rachel. They have been in the same methods of AVT u mention and yet, they werent able to develop language through this approach and ended up with language delays. That is the goal of DBC..is to ensure that all children have full access to language, not partial. Why do you accept putting any deaf children in that kind of risk? April 6, 2008 at 5:11 pm MISSION: “The Deaf Bilingual Coalition, (DBC) promotes the basic human right of all deaf infants and young children to have access to language and cognitive development through American Sign Language (ASL).” I am not twisting the website’s words. Read this and tell me that you do not promote that ALL deaf children use ASL. How did Melissa put Rachel at risk? April 6, 2008 at 5:12 pm How did Melissa put Jessica at risk? April 6, 2008 at 5:16 pm I do respect your opinion. It’s your opinion. We do not share the same opinion. Again, no one here is bashing bi-bi for those who have chosen it for their children. The important thing is parental involvement. Don’t knock us who have chosen AV for their chidren. None of us would be continuing such a program if progress isn’t shown. We’re not putting our children in harm’s way. Can we agree to disagree? OR is the DBC going to go to Congress and try to force us to use ASL with our children? Again, to all, I highly encourage you to visit an AV program and AV families. It’s not what you think. April 6, 2008 at 5:31 pm My husband and I have chosen my son’s primary language to be English. We believe it is the right of every child to use spoken communication. If he is properly aided or uses a cochlear implant, why would I begin by teaching him ASL? Why wouldn’t I choose to begin with English? We don’t need ASL to learn English. Literacy rates, which I know that you also value as important, are based on written language/reading. Therefore literate in English? Again, I respect your opinion. April 6, 2008 at 5:32 pm Excellent suggestion. I will do that very soon. April 6, 2008 at 5:35 pm By using an approach that doesnt guarantee full access to language and information puts any children at risk. For deaf children, by placing them in programs where language is best accessed through hearing is putting them at risk because they are having to use their weakest ense, the ears. I feel that all deaf children have the right to full access to language just like hearing children do and that is a visual language, in other words, ASL. I am just tired of seeing so many children coming into my program at an older age so delayed in language because they didnt have full access to language. It shows that even though with CIs, these children didnt have full access to language just like their hearing counterparts did. Is that right to put deaf children in that position? If a hearing child was put in that position, an outcry would occurr, wouldnt it? For deaf children, it seems to be ok cuz we all want them to act like they are hearing, not deaf children, right? My answer would be yes, Melissa took a risk by placing her children in an oral-only environment. I remember reading somewhere that one of them had language delays when she was younger. Anyone can correct me if I am wrong. April 6, 2008 at 5:41 pm Are you happy that your parents took a risk? April 6, 2008 at 5:43 pm “AGBell will not go after other organizations and say “Change your policy!” I’m sure you’ve noticed that AGBell has been silent about DBC – They’re giving you the respect to let you advocate for whatever you want and give them credit for that please!” Didn’t AGBell write a letter to Pepsi blasting them for using ASL in their commercial recently? To say that I risked my children’s well being is insulting. Rachel’s and Jessica’s success and accomplishments speak to my not only not putting them at risk but also are evidence of how the approach that I took for them benefitted them so greatly. I cannot speak about the children you know. I can not know if they were in legitimate AV programs or if they had parents who did the necessary follow-through at home. What I can speak about are the many children who have gone through and continue to go through my AV center. They are all succeeding as my girls have. Far from putting their children at risk, what their parents are doing for them is benefitting them and will stand them in good stead for the rest of their lives. Rae's Mom April 6, 2008 at 5:46 pm How can we expect to agree on such a subject when we don’t even agree on normal parenting ideas? Do you spank your child? Or time out? How about the rewards system? Should they be vegetarians or can they eat meat? Super healthy food or take out once in a while? No tv and video games? Most parents do not always agree with how we raise our children. There are no laws saying love and logic, for example, should be THE way. I personally enjoy the insight that Rachel provides in her blog. It is very rare that I get to hear so much from someone who grew up with a CI. I have spoken with adults who have gotten CIs later in life. Some of them had hearing and lost it, some had minimal hearing with hearing aids and chose to have the surgery. Although I am sure there are many who are not happy with the result, these people have been. However, there experiences are not the same as someone implanted at a young age. In my opinion, ANY parent preparing to have ANY surgery for their child hould know the pros and cons of the surgery and what is required to make it successful in the end. Those who go into this without the proper information will be disappointed. The professionals are as much to blame as the parent if they have not made it clear what it takes to make the CI successful before the surgery. It is in no way a fix all. There are people that will never be able to use the device for various reasons. And it takes work, therapy, parent and school involvement to make it successful. I am afraid that people often do not acknowledge this at the beginning. There are, also, people who choose not to have the surgery. I think both sides should realize it is only up to the parent. What I find so sad and sometimes very annoying is how ugly people seem to be towards the parents and the children with CIs. Honestly, that is your opinion and none of your business. I think ASL is a beautiful fascinating language. I would love to be fluent in ASL, unfortunately that proves difficult for me. At the time we were required to wait two years, using hearing aids, which did not work at all for her, before we could have her implanted. My daughter was provided with teachers from the School for the Deaf from 6 months until three when the local school ystem takes over. We chose to have total communication at the time. My daughter was implanted shortly after and eventually, SHE showed less interest in the sign we taught her than in the sounds she was hearing. It wasn’t a perfect transition and if I had my choice I probably would have had her implanted earlier. But we had communication at the time and we still do. She is a happy child. She LOVES school. No one can tell me I’m wrong, I’m living it. My daughter now has a choice, when he is older she can continue with the speech we have given her or she can continue to learn the ASL that was her first language. As long as my daughter is happy in the end, I will be as well. Rachel is happy the way she is, she does not wish to experience what you keep pushing at her. Let her experience life on her own terms and you on yours. She is trying to provide information for parents on her website. If you do not agree, I suggest you take it with a grain of alt, as I do the flame posts that I have found on the net, both before and after my daughter’s surgery. April 6, 2008 at 5:48 pm Shel, you are correct that “oral failures” is a horrible term to use. It’s really hard to know what other label there is that accurately explains what one is talking about. Does anybody have a better label? Hey..dont take it personal. It is a fact that deaf children’s ears are their weakest sense and spoken language is processed auditoritally so yes, that is a risk. Those parents have put their children in AVT programs. How many times do I have to say it? If you dont believe me, you dont have to but that wont hide the fact that there are still numerous children being deprived of language and how do we stop that? By ignoring it? No…that’s why I support the DBC. April 6, 2008 at 5:50 pm I prefer to say that the approach failed the children. I still call the deaf childen.. I would never ever put the word “failure” next to their names. April 6, 2008 at 5:53 pm I’m glad you support DBC. I support your decision. I support AVT. Do you support mine? April 6, 2008 at 5:59 pm I do not support strictly-only AVT…I would like ASL/AVT. To make it clear, I am not supporting ASL-only. The DBC supports the use of both which is why I support it. It is good for deaf children to have oral kills but I think they all are entiltled to the same rights as hearing children do when it comes to having full access to language. I do not support only-ASL. I do not support only-AVT. I support the use of both for all deaf children. April 6, 2008 at 6:01 pm Rachel, I think you may have some misconceptions of what Total Communication really is. May I suggest that you do a bit of research, and it may be difficult, because even professionals confuse the term. April 6, 2008 at 6:06 pm My parents didn’t take the risk. They followed AVT’s guidelines correctly, and they were very involved parents by working very hard to help me succeed. There are several factors that allow me to hear and peak well, and to be who I am today. Here are the factors: - Using AVT guidelines correctly. - Having a good AVT therapist who has AVT certification. - Spending at least an hour every day doing therapy work, which I thought was playtime with my mommy. - Communicating with me as much as possible throughout the day. For example, when my mother cooked. She didn’t just stand and cook by herself and let me sit and play. She asked me to help her. When I helped her, she would cover mouth and say, “Rachel, go get carrots.” “Rachel, what color is this apple?” Of course, she expected me to respond, and I did. I never realized until later in my life that she was doing this as part of therapy work. I thought it was just a mother-daughter moment. - Taking me to audiology appointments at least once or twice a year to make sure that I have good maps. I’ve had times throughout my life when my parents noticed that I wasn’t hearing well. As soon as they noticed that I wasn’t hearing well, they took me to the audiologist who fixed my hearing. It’s very important to keep children’s maps up-to-date. - Have a good audiologist. There are audiologists out there are who are not doing their best job, and I’ve gone through that. Thanks to my parents, they took me to NYU to the best audiologist when I had a not-so-good audiologist until we found a better one in Atlanta. I know a few parents who will drive as much as 1 or 2 hours just to go to the best audiologist, even though there are a few in their local areas. - Sending me to mainstream schools that best fit me. For middle school, my parents sent me to a school that had a teacher of hearing impaired to help me with my slight language delay. Having a good teacher of the hearing impaired is a plus. My teacher of the hearing impaired helped me tremendously to improve my language delay and prepared me well for high school. Again, for high school, I went to a high school that also had an outstanding teacher of the hearing impaired who mentored me well in my English classes. - Parents being there to help me whenever I requested. If I didn’t understand a particular homework assignment that I had, my parents were there to help me. I’m very thankful for my parents for being very dedicated in my life. If one of these factors is faulty in a child’s life, then it’s going to create problems allowing the child to succeed. April 6, 2008 at 6:08 pm “John, can you please answer my questions that I asked before:” “Please state where I said in my blog entries that I’m more “perfect” again in the future.” I had used quote marks on the word “perfect”. It was your attitude, the way you write and say things, the conclusion of your statements “Is it really fair for me not to be able to talk about my being happy why you enjoy being bilingual by using ASL and English?” I am happy for you to be happy, no problem there but it is the way you ay it as if you are a 5 year old kid to another kid. You seem don’t understand how your immature statement reflects yourself. “Also, has AGBell ever come to any NAD or any ASL related conferences and AVT, it’s no longer oral nor AVT. It’s TC or Bi BI approach.)” AGBell and 1880 Milan eliminated our sign language and forced oral only method upon deaf children in schools and became victims of the deprivation in cognitive language. The Deaf people just want their sign language back. AGBell can have their oral only methods but it is us, the victims that need to fight to get our dignity of our sign language back. Rachel, don’t you have any feelings of how awful AGBell was to take away the deaf people’s sign language, AGBell is obviously an oppressor! “If you don’t like my not using ASL in my life, that’s your problem. Not mine. I really truly feel that some people are discriminating against me simply because I don’t know ASL and that needs to come to an end, just as deaf people who use ASL say they feel discriminated because they use ASL and/or don’t have perfect speech and/or hearing.” I have many deaf friends that don’t know ASL and have CI. I have nothing against it. The different between you and my oral friends is ATTITUDE. Simple as that! “At the end of the day, let’s just enjoy the diversity of the deaf interpreters to communicate with each other.” Yes, let’s do give respect to the diversity of the deaf community. The Deaf community wants their sign language back that AGBell stigmatized the society that ASL should not be used because a deaf child will not be able to have good speech which is not true. “The best way to build the bridge is we accept each other as a unique conversations.” Yes, I agree, we need to tear down that wall that AGBell/AVT and its associates created since 1880 and build a bridge to accept our needs of cognitive language. Thank you, April 6, 2008 at 6:15 pm “I had used quote marks on the word “perfect”. It was your attitude, the way you write and say things, the conclusion of your statements” Please provide some quotes from my entries that show my attitude that you don’t like. I would like to learn. April 6, 2008 at 6:17 pm I agree with you that many of us have lived with the stigma that AGBell created years ago and it hurted many of us. Despite my oral success, I grew up feeling disconnected from everyone because my rights to have friends who were like me were taken away cuz the professionals felt that it was better for me to have hearing peers as role models to ensure that my speech skills are utilized. What they forgot was my ocio-emotional needs as a deaf person. I think there is just way too much focus on speech and hearing. Eyes wide open. No one here is trying to take away your language. Why are you trying to take away our children’s language and replace it with ASL? Eyes wide open. I mean replace our children’s primary language with ASL? It seems to me that the wall is yours. Tear it down, John. AVT is not creating a wall. It’s a choice. It’s an option. English is cognitive April 6, 2008 at 6:24 pm Don’t you think that citing something that occurred in 1880 as justification for your thoughts and actions 128 years later is tretching it? If you check A.G. Bell’s website today, you will see AG Bell Joins Amicus Brief in Hospital-Interpreting Case Recently, AG Bell joined several advocacy groups in filing an amicus brief in the U.S. Court of Appeals, Second Circuit, in the case of Loeffler v. Staten Island University Hospital. The case involved a plaintiff who is deaf who requested, but was denied, an interpreter during treatment at a hospital. AG Bell joined the National Disability Rights Center, National Council on Interpreting in Health Care, National Association of the Deaf and many other organizations to “emphasize…the ramifications of denying effective interpretation ervices to patients who require them.” The brief further argued that the hospital violated “long-established clinical and public health tandards for proper patient care, placing the lives and well-being of patients who are deaf …at risk.” and EHDI Act of 2007 Originally enacted in 2000, the Early Hearing Detection and Intervention (EHDI) Act provides funding for early hearing detection and intervention programs nationwide. The U.S. Congress is currently considering reauthorization of this landmark legislation. On Thursday, March 13, the House Energy and Commerce Committee passed the EHDI Act of 2007 (H.R. 1198). It will now go on the entire House of Representatives to be voted on sometime in the first two weeks of April. as well as an entire section on advocacy, much of which applies to all deaf and hard of hearing children. April 6, 2008 at 6:26 pm Mom2boys… ASL is a cognitive language too and it is 100% accessible to deaf children. What do u have against with the use of both? Why is a language that is not fully accessible the only option for you? April 6, 2008 at 6:27 pm Did u read the letter AGBell wrote to Pepsi and how degrading it was to ASL and the Deaf community? I believe that was in 2008. Deaf Person April 6, 2008 at 6:31 pm Umm…what about these deaf children with CI that come from deaf families? I have spoken with 2 deaf mothers whose children with CI are peaking and hearing very well despite using ASL at home. Any opinions? April 6, 2008 at 6:33 pm Deaf Person, You brought up a very good question, and I actually got an e-mail from a deaf mother who has a deaf child asking me that question. Here’s my response to her: I’m definitely supportive of deaf children of deaf parents using ASL as that’s your family’s primary language and mode of communication. Plus, those deaf children who have deaf parents have the advantage because they are learning sign language from parents who are already fluent in it, whereas parents who hear normally and have no background in sign language is an issue because to them, learning ASL is like learning a whole new language from scratch. Thus, those children would be at a greater disadvantage if their parents used ASL as the primary mode of communication because they’re not getting the full complete language from the start unlike those deaf children of deaf parents. If you have different thoughts from my thoughts, I would definitely be interested in hearing it as I enjoy hearing different perspectives. April 6, 2008 at 6:40 pm Melissa and Mom2Boys, You both are naive about AGBell, read that they wrote to Pepsi just three months ago, January 31, 2008 Ms. Julie Hamp Senior Vice President PepsiCo Communications 700 Anderson Hill Road Purchase, NY 10577 Dear. Ms. Hamp, On behalf of the Alexander Graham Bell Association for the Deaf and Hard of Hearing (AG Bell), we are writing in regards to the airing of your upcoming Super Bowl commercial highlighting deaf characters. Established in 1890, AG Bell is the only national organization dedicated to supporting children and adults who are deaf or hard of hearing who use spoken language and hearing technology to communicate in mainstream society. Although we appreciate Pepsi’s efforts to encourage new promotional ideas from your rank-and-file employees and your willingness to celebrate diversity, we would be remiss if we did not call your attention to the fact that your advertisement offers a limited view of the deaf community. Since you have chosen the Super Bowl as the forum to launch this campaign, and because of Pepsi’s size and stature, we feel a responsibility to offer our perspective on this somewhat misleading stereotype presented in your advertisement. We trust you understand that deaf and hard of hearing individuals are a diverse group and therefore do not fit into a single, distinct culture. Your advertisement perpetuates a common myth that all people who are deaf can only communicate using sign language and are, therefore, isolated from the rest of society. In fact, today’s hearing technology, coupled with early screening identification and intervention, has led to incredible advances in listening and spoken language skill development. Of the more than 30 million Americans who live with hearing loss, the majority use spoken language as their primary mode of We would also like to remind you that with the amount of money Pepsi will spend on just one 60 second spot to air during the Super Bowl, you could help an untold number of families obtain hearing aids and other professional services that are costly and in many cases not covered by medical insurance. We would be very willing to work with Pepsi to develop some creative ideas to promote other facets of the deaf community and to highlight positive role models who have met the challenges of this condition and thrived using spoken language. In addition, we invite and encourage your participation at our 2008 convention to be held in Milwaukee, Wisconsin, June 27-30; the largest gathering of families with deaf and hard of hearing children in the world. Your continued involvement in this issue would go a long way to educate the public about this oftentimes invisible condition and promote appreciation for those individuals that go above and beyond to overcome the absence of something many of us take for granted – the miracle of ound. April 6, 2008 at 7:02 pm Mom2Boys said; “John, language.” Mom2Boys, Never anywhere I have said that we should take away English and replace with ASL. My goal is only to focus on babies from start to 18-24 months to learn to communicate with parents while their vocal chord’s development is not ready to speak. And the only way to communicate is sign language. But sadly, many parents have been tigmatized by AGBell that sign language “should be avoid at all cost”. Please stop trying to mislead readers of my intention. April 6, 2008 at 7:04 pm “‘I had used quote marks on the word ‘perfect’. It was your attitude, the way you write and say things, the conclusion of your statements’ you don’t like. I would like to learn.” Still waiting… If you want my attitude to change, please provide me quotes from my previous blog entries that shows my attitude that you don’t like. April 6, 2008 at 7:13 pm Where do you get that a baby’s vocal cords are not ready to speak between 18 – 24 months of age? My son was speaking in sentences by 20 months of age, and hearing babies start babbling at less than a year of age. April 6, 2008 at 7:19 pm I said from start to 18-24 months. Some babies start 4 months old and ome said earlier so I now it is better if I say from “start” to 18-24 months. No where I have said between 18 and 24 months. April 6, 2008 at 7:25 pm After reading many of your blogs, it is just obvious that you assume to think that way. I am not going to waste my time with you because I don’t think that you will ever realize about your attitude…like you just said………”Still Waiting… If you want my attitude to change, please provide me quotes from my previous blog entries that shows my attitude that you don’t like.” April 6, 2008 at 7:30 pm So, here’s a question about a specific example for those of you who advocate the Bi Bi approach. When my girls were little, I read to them a lot. In addition, I used experience books that I made for them with almost daily entries about events and concepts in their lives. When we would sit and talk about these story books or their experience books, I’d do it either with them sitting on my lap looking at the book and listening to me or with them by my side with their implanted ear next to me as they both only initially had one ear implanted. I consider this time spent with them to be a very important part of their auditory training time as it was one-on-one focused listening time with my working on language and vocabulary through books and their personal experiences. So, if you don’t advocate sign and speech at the same time but, rather, separately, then I would have needed to also do this eparately with sign, but then that would have taken away time I spent doing this auditorally, which would have taken away from their auditory training time and, thus, hindered the development of their auditory pathways. As any parent knows, there are only so many hours in the day, and we filled our available hours with these types of activities, all of which contributed to my daughters having the language and hearing kills that they have today. I would suggest you to read one of Jodi’s blog entries that explains well why I write the way I write – http://rallycapsdotnet.blogspot.com/2008/03/re-ci-controversial-why.htm l “What if deaf individuals who have worked so hard in avt and in life in general are just proud to live their deaf experience with a ci and the ‘superiority aspect’ of being fluent in the English Language has nothing to do with it? What if they are advocating ‘Choice’ in the deaf experience by discussing the benefits of ci? If Rachel is here on deafread.com to interact in productive dialogue with individuals interested in her experience, is she an audist because she is willing to openly answer questions about her journey? Or is she an ‘audist’ because her views conflict with those of readers? She responds to criticism, reads it, listens and reflects…she is not an audist. Do you measure your level of success based on how others see you or as how you see yourself? Really consider the answer to that question and you will begin to see Rachel as a twenty year old woman who sees herself as successful. This is why she is not an audist, just a person who has achieved something desired after working so hard for so many years, and that she wants to share this experience with others. Audism carries a component of hatred, just like racism…do you really feel that Rachel hates you?” I think you just don’t want to hear any stories about my being happy and confident so that your organization can grow! April 6, 2008 at 7:35 pm I never said that you are an audist. Maybe you need to go to a workshop of some kind to learn how to express yourself. Rachel, I think that you can be a great person but it is something that you have that needs to be improve about how you write or communicate. April 6, 2008 at 7:40 pm I think you are confused with the BiBi method. This is for the educational setting at schools. I know of so many families who have had deaf people volunteer to come to their homes to read stories to their children using ASL while the parents maintain the responsibility for poken language exposure. Never did I say that the parents must use both at home..just only when the children were unable to develop spoken April 6, 2008 at 7:44 pm And that helps the child communicate with the parent how? And, if we’re talking about schools, how does that apply to babies and toddlers? April 6, 2008 at 7:53 pm John, why do you feel you must make a personal attack on Rachel? “Maybe you need to go to a workshop of some kind to learn how to express yourself.” PLEASE!!! I am well over 50 and continue to improve how I write and communicate. I endeavor to reach out and learn from others. This beautiful, articulate, and generous person Rachel has given me uch hope and inspiration. Keep up the good work Rachel, this world needs more young people like you willing to share and enlighten us. April 6, 2008 at 8:02 pm Cal Grandma I am admire your inspiration for Rachel. Let’s stop playing games. We need to focus on the big picture, babies need communicative language from age 4 months to 18-24 months and AGBell doesn’t want that to happen. April 6, 2008 at 8:05 pm Here is your response to this quote: “DBC never have said that we hould have ONE method that will work for all deaf kids.” Rachel: “I have to giggle at this comment because it’s so obvious that DBC supports only three out of several methods, ASL, TC, and Bi Bi. When ASL is used with the Oral approach or AVT approach, it’s no longer oral nor AVT, but it becomes TC or Bi Bi. That’s what DBC’s supporting – TC, ASL, or Bi Bi. DBC is not giving people the right to choose which method to use.” Hold it right there! DBC and many people like me do not support TC It is obvious that you don’t understand what TC is since it can be either a combination of signs and speech, manually coded English, and/or ASL. We are not supporting this philosophy at all because it makes learning a language confusing and that these methods consist artificial languages. For a Deaf child to go through a program that makes two languages distinct, one should experience spoken language if applicable and ASL separately, not at the same time. DBC has made it clear that it is against the concept of oral only approach and it has always advocated to add ASL to oral approach. Just hold your laughs because you are getting it all wrong. Never once did I ever say that these parents did it wrong but provided proof that ASL helps language development. There are too many misconceptions that I feel I am in a position to clarify the misconception, instead, I have been pushed away and been ridiculed at. I have presented many research documents and many of them proof that there are benefits for a Deaf child with or without CI to acquire ASL. But you just continue to giggle because you found one of many research documents that includes WiKi. Wiki is an online source that includes what the Deaf community has shared as it was never intended to be one of the main research documents anyway, besides it doesn’t say anything about AVT so it is not even the focus of the topic here. NAD welcomes the diversity of the Deaf community. They, including ASL Expo, even have a booth on CI and do you see one about ASL in AG Bell? Nope! Don’t you see that AG Bell shuns and bashes ASL by giving parents a wrong message You don’t simply tell people who support DBC to hush up because AG Bell hushed it up too long. Anyway, the topic is not only about you but it is about remaining CI children who are not successful with AVT that they don’t have ASL to back them up. Since you and I are on the same page wanting to build bridges by accepting each other, I asked you a question that you haven’t answered to me before: Would you support both ASL AND AVT for Deaf babies? I don’t have a problem with that, do you? April 6, 2008 at 8:08 pm What games? This is not AGBell’s website. It is Rachel’s. April 6, 2008 at 8:10 pm No one can support AVT and ASL for deaf babies because, by definition, it wouldn’t then be AVT because one of the main principles of AVT is that language is taught through the auditory and not visual. You can ask if one would support the use of both spoken language and ASL, but ign cannot be added to AVT any more than the Bi Bi approach would be the Bi Bi approach without ASL. April 6, 2008 at 8:12 pm “Would you support both ASL AND AVT for Deaf babies? I don’t have a problem with that, do you?” As I’ve always said, I will not support ASL and AVT for deaf babies. Please respect that while I respect your opinion. I don’t mind your advocating for bi-bi approach, but please don’t ask people like me to agree with you. Building bridges doesn’t mean agreeing on the same method. It means respecting each other. Please don’t ask me this question again. April 6, 2008 at 8:13 pm I fully support ASL and AVT for Deaf babies. I dont know why the parents and Rachel have a hard time supporting that too. I suggest that you visit BiBi programs for babies up to high school so you can gain a full understanding of where many of us are trying to explain. It is hard to understand via the Internet until you see it in action. April 6, 2008 at 8:16 pm Rachel and Melissa, By not supporting ASL to AVT programs, you are indirectly supporting putting numerous of deaf babies at risk for language delays due to poken language not being fully accessible to them. I think AVT only is just playing Russian roulette with these children’s language development. You can deny it all you want but it is happening out there. Maybe you choose to be blind to it, perhaps? We are supporting your AVT approach but yet, you are not supporting the ASL approach so how is that building bridges for our deaf children? April 6, 2008 at 8:27 pm Of course, it is your opinion and I respect that as well. I have already shared that Deaf babies who acquire ASL have more benefits in developing speech/auditory skills when they get to reach at an appropriate age when they can start using vocal chords. I have already hared in my recent blog how parents can learn ASL. http://deafprogressivism.blogspot.com/2008/04/hearing-parents-can-learn -asl-how.html I have tried to build bridges by meeting you halfway and instead you just brush me off. I just don’t understand why would you want to put Deaf babies at risk by exposing AVT only to them knowing that ASL would guarantee them to develop literacy skills. What’s wrong with having both Ok, I am outta here so thanks for letting me to participate in the forum. Just please continue to be open minded about bilingual approach. April 6, 2008 at 8:34 pm I feel just as the same as you too. As for that, I feel that nothing is being accomplished here. Thanks and have a good evening, Shelly April 6, 2008 at 8:37 pm Shel, thanks for providing your valid points as well. **shrugging my houlders** about these die-hard pure AVT fans, lol. Ciao! Shelley Potma April 6, 2008 at 8:40 pm I have stayed out of this debate, but can no longer stand by and say nothing. language. It’s puzzling.” 1#110: “Eyes wide open. No one here is trying to take away your language. Why are you trying to take away our children’s language and replace it with ASL? Eyes wide open. I mean replace our children’s primary language with ASL? Those two comments show a serious lack of comprehension of, and respect toward ASL as an actual cognitive language. Do read the research materials that Barb DiGi suggested. Also, William Stokoe’s research in the 1960′s proved that ASL is a language since it has all linguistic components i.e. grammar, syntax, pragmatics (it even has phonology level and morphology level (both free and bound morphemes). Research has shown that language occurs in the left brain. Guess what. Spoken English, Spanish, and all other spoken languages occur in the left brain. So does ASL! Actual languages are processed through the left side of the brain. Artifical modes of communications (ie. Sim-com, Total communication, SEE) are processed in the right side of brain, which is NOT the component of the brain used for language development. Look it up, all of you. Why is it that hearing babies are given the extra benefits of signing from birth, and yet Deaf babies are denied that? See Amy Cohen-Efron’s The Greatest Irony vlog. Language and cognition does NOT begin the moment a child speaks, nor does it begin the minute a child is implanted. It begins the minute the mother speaks or signs to the baby… right after birth. While one waits for implantation, and does not sign with the baby, one loses precious time in the language and cognitive process with that child… one that will end up in a race against time. The window of opportunity for language acquisition can close as early as 6 years of age. The DBC is advocating the use of ASL from birth, to stimulate the language acquisition process. Parents who are not fluent in ASL can still learn and use it, grow with the child AND expose the child to deaf adults with good ASL skills. My own mother did that when she found out I was Deaf at 6 months of age. FYI: I have never been through the oral nor the AVT method, and I THANK GOD FOR THAT. I would have been otherwise damaged linguistically, both in ASL and in English because ASL is usually used at the very last resort after the Oral or AVT methods fail. to do. That, as history shows us, doesn’t fly.” That is rich!!! AGBell has been telling parents what they have to do since the Milan Convention of 1880, and for 128 years parents have accepted it from them. This has resulted in the suffering of thousands and thousands of Deaf children. Yet when we,the Deaf, who go through life as Deaf people and are the best source of information and advice when it comes to all things Deaf, are told we are bullying you parents, and telling you what to do????? How’s that for irony?!? Shel (A Deaf Canadian) April 6, 2008 at 9:13 pm Deafie says in #66: “ASL failures versus ASL successful children AVT failures versus AVT uccessful children CI failures versus CI successful children” It varies from an individual to an individual. If learning disabilities were not detected quickly, the learning process would be hindered amongst children. I knew of a deaf fellow who did not make the grade in oral school due to his learning disability which had not been detected until he was eight of age. His mother had to learn Cued Speech, and, in turn, she taught CS to her him. Through Cued Speech did he make a mooth transition to the process of language acquisition. (Ironic as it may sound, his younger brother with perfectly normal hearing failed in regular school. It turned out that he also had a learning disability. His mother decided to apply the same approach. It did work. The two brothers went on to a university thereafter.) Jean April 6, 2008 at 9:30 pm I have no more comments Good night April 6, 2008 at 9:43 pm Jean, Your comment is very true. My sister, Jessica, has apraxia, a type of peech disorder. When she was first implanted, she was not making any progress in speech during the first few months as my parents expected. So, they took her to a specific therapist (I can’t remember the type of therapist, but I’ll ask my mother) to find out why my sister was not developing speech well even though she was responding to the sounds with her CI. So, the therapist gave her the diagnosis of apraxia and gave her treatments for her specific disorder and within months, her peech took off, and she’s now speaking very well! You’re absolutely right that learning disabilities need to be detected quickly. That’s where the parental involvement plays the role. Yes, every individual is different, and we are fortunate to have many different methods to choose from that best fit our lifestyle. “(Ironic as it may sound, his younger brother with perfectly normal hearing failed in regular school. It turned out that he also had a learning disability. His mother decided to apply the same approach. It did work. The two brothers went on to a university thereafter.)” It’s really interesting how certainly methodologies that are meant for people who are deaf can also work for hearing people like some people ay that ASL helps improve normal hearing people’s language. That goes for AVT too. Even though my brother has normal hearing, my mother still provided my brother some AVT, and he consistently scores 99th percentile on the verbal section of standardized testing. April 6, 2008 at 9:55 pm Hi Shel, ASL is a language. I respect that. I’ve read the research. Didn’t wait for implantion. Found out about hearing loss. Properly aided the day after learning about his hearing loss. So he didn’t lose precious time. “FYI: I have never been through the oral nor the AVT method, and I THANK GOD FOR THAT. I would have been otherwise damaged linguistically, both in ASL and in English because ASL is usually used at the very last resort after the Oral or AVT methods fail.” NICE! If you read John’s comment to which I was referring……”One way to resolve this issue is to have all of us (both sides) to go to Congress and demand to have a “Language Commission Study for the Deaf”. A three or four year study by “non-bias” group (Not AGBell, AVT, Gallaudet, etc) to find out if “Oral only method” or “ASL only method” or English only method or Bilingual method – ASL/English(reading and writing) or ASL and oral combine method should be adopted for all Deaf babies and children in schools.” That he actually thinks that we should go to Congress and let them tell parents what they have to do. He is saying that it’s ASL or the highway?? Sounds a little domineering to me…and to many others. “I think AVT only is just playing Russian roulette with these children’s language development.” Come on….everyone look. This is what parents of AV families see a lot of…it’s truly sad. Melissa, how have you dealt with this for 21 years? “We are supporting your AVT approach but yet, you are not supporting the ASL approach so how is that building bridges for our deaf children?” Ok, what is it? You say you don’t support it. You now say you do? I support decisions parents make for their children when they work hard and make the necessary sacrifices for their well being. I support your right to your opinion. I prefer the choice I made for my child. Nope..wasn’t playing Russian Roulette at the time either. For those of you out there who truly care (just kidding), today my son was speaking with his aunt on the phone (she has a funny accent as he’s used to a southern drawl), and he told her all about my birthday party…cake, etc. She asked him what flavors of ice cream we had, etc. He told her about mint chocolate and chocolate. In other words, it was cool that he was able carry on a great conversation long distance with a funny sounding aunt using his cochlear implant. I think he asked her to repeat something once. Mind you that this was in our very loud kitchen with his baby brother in the background and his father doing the dishes. (only b/c it was my birthday) She is a very important part of our lives, and it’s truly great that he can develop this relationship via the phone as we don’t see her enough. He’s 5. OK NO COMMENTS ABOUT HOW WE COULD USE OTHER METHODS OF COMMUNICATING WITH HER….just respect that this is cool. April 6, 2008 at 9:58 pm Oops Shel, I forgot. If you get the opportunity, visit an AV Center and check it out. It’s not what you think. April 6, 2008 at 9:59 pm I meant the first Shel if you are not the same? American Shel? Canadian Shel? Ann_C April 6, 2008 at 10:26 pm I’ve read this entire post with its comments, good golly 142 comments and counting. Ya know, Rachel came into DR with her own blog, with her own views which are about CI’s, AVT therapy, and her life as a young deaf person with a CI, NOT about ASL, Deaf culture, or DBC. Yet here are some DR bloggers or commenters who are demanding that she change her “attitude” regarding ASL for deaf babies, Deaf culture, and that they change their “attitude” about CI’s, AVT therapy and all that jazz, now has she, folks?? And this demanding for PROOF, PROOF, and PROOF is getting out of hand and outright silly. Anybody worth his salt knows that many studies and/or surveys are not without bias, not without variables that can alter results, paid for by organizations with their own agendas, etc. Any group or organization can interpret results of a study for their own ends as well. Get Congress to commission a study on language acquisition for deaf children and you’ve got the government telling parents how to raise their own children, deaf or otherwise. Anybody really want that?? Don’t get me wrong, I hold some different views from Rachel’s. At least he’s sticking her neck on the line to express what are her views, just as Mishka Zena or Barb Digi or Tom Willard or Paotie do several days a week. There’s more than one way to skin a polecat. April 6, 2008 at 10:56 pm Ann, Thanks. You are a breath of fresh air. I respect that you may not agree with all of what Rachel says. I wouldn’t expect anyone to do so. The funny thing is that I spent my birthday blogging. Wow. It was actually a change of pace from my life with three boys, a husband, a male cat and dog. I think my husband thought it was a weird choice on my part, but for you moms out there, it was kind of relaxing. April 6, 2008 at 11:05 pm I can’t just stay mum on this one thing anymore….many of you who upport DBC are a product of TC just as I was! I noticed this Cheryl from MA saying that she grew up with other method and ended up using ASL and ASL fits for her. Most of us are a product of TC because that was what was offered to us in our generation. We are NOT a product of ASL!!!!! Most of us probably use ASL now or a combination of ASL/PSE maybe simcom and so on… Which brings up more questions which I will not get into now. And from reading the rest of the comments and I actually read the last PDF file that Melissa posted in her comment. How many of you have read it all? What I read answered the question I had in my mind from someone who teaches at a mainstream school. This person was angry and told me eeing successes. There is no question that if a parent decide they prefer C.I., the parent is going to have to follow the suggested plan to ensure their child is going to be successful. Now, for DBC to advocate Bi Bi, that’s fine. But, I think DBC is going about it the wrong way. Why are you going after AGB? AGB is on the right track for parents who prefer their kids to have C.I. AGB is not for parents who prefers their kids to use ASL. Forget about AGB’s pespi letter..in fact his letter is no better than other letters I’ve seen deaf write in regards to Cold Case show, etc. This is trivial. DBC, if you advocate ASL, Your job should ideally ensure that the hospitals/ENT/ whatever…provides information about Bi Bi approach. Your job would then to make sure that these parents have what they need for their child if they choose Bi Bi approach. There is no way you can mix these two. There may be deaf families that incorporates ASL in addition to AVT and it may be possible for them because ASL is their language but for the majority of hearing parents, it is not. I really think DBC is approaching it in the wrong way! I respect both approaches and respect the parents that makes their decisions. I however am concerned more about OTHER parents who have a false sense of thinking that once they get their child implanted, their child will just automatically pick up and be “normal”. There are too many kids being implanted after five years old and with no intense AVT at all or dedicated parental involvement. Many of these kids were already exposed to ASL or signs at their school since they were already part of the deaf/hoh programs. That is where many C.I. failures comes from. The term “C.I. Failures” tend to be used by mainstream deaf teachers because they tend to be frustrated when dumped with kids like that. I think it’s a terrible term but it is what it is. I believe C.I. failures are a result of lazy parents or parents who are misinformed. Perhaps DBC should rescue these kids. I learned a lot by reading the materials that Melissa provided. And I uggest you all who disagree with Rachel, to read it as well. Read all the documentation over at DBC and I’m sure you will come away with a better understanding on this ever so controversial topic. I think these two needs to be kept separately and we need to respect these two as two sepearate approach. The exception would be if a deaf family decides to implant their child, then I can see where AVT and ASL would be able to work. dog food April 7, 2008 at 2:27 am Wow, i appreciate many of the comments spent back and forth here. I do want to point out that referring to scientific data and stats may not always help any points here on this topic. This is a personal experience that is varied in so many beautiful ways. John, I can actually feel the heat of your emotions in your words in many comments. I believe Rachel is being open minded and is doing well in this kitchen. I think theres an opportunity to work together here, I really appreciate Open Minded’s comment. I appreciate DBC’s efforts and all the people behind Cochlear Implant Online. In the end, it seems everyone’s efforts are all about being able to communicate. Its a beautiful thing worth working for. April 7, 2008 at 5:41 am Yup… dog food has a point… it all comes down to communicating… somehow. If cone does not agree, don’t try forcing down the throats to make them agree. It is all personal. Candy has a point… there are several CI children who are not doing well… same as several non-CI children not doing well. Anyway, I enjoyed reading the comments. April 7, 2008 at 6:37 am Same goes for some hearing children not doing well while other hearing people doing well. No difference. Deaf/Oral Linda April 7, 2008 at 8:12 am DBC, Barb Digi, Deaf/ASL/non-speak are still dicriminated Against AGBELL, CI, Non-ASL, Oral school, Hearing Parents, blah blah. You all deaf/ASL/non-speak have to accept what hearing parents have a right to make a decision the best for deaf child/children. You all are continue controlling controlling controlling hearing parents and AGBELL. You all are still dividers, bullied, discriminated, JEALOUS, blah blah. Please SHUT UP and ACCEPT. AGBELL will never die !!!!!! You all can’t break the walls down. AGBELL is very strong company for many years. You hear me. *sigh* April 7, 2008 at 9:42 am You talk about breaking down walls and building bridges, but then you ay it has to be only on your terms, that we accept that all deaf children learn ASL and that that is the best and only way to go. I’ve told you that I do not agree with that but that I respect the rights of others to hold varying beliefs. Most of all, I respect all parents who commit themselves 100% to their children regardless of the approach that they choose. You, on the other hand, tell me and others who hold my belief in the pure AV approach that we are wrong and that there can be no bridges unless we say you are right. What this says to me is that you are the ones making that wall even higher. There can be no bridges without respect and acceptance. April 7, 2008 at 10:27 am Linda, I am only against the idea of not allowing Deaf children to be exposed to ASL and nothing else. Please don’t twist the words about what you said about me. Your comments made me laugh because there is no way that we all ever got to control hearing parents like we really have the power? Come on, get real! AG Bell is a rich, dominant organization who actually have their claws on the parents more than a socio-linguistic minority group of the Deaf. Too often, the parents are not being fully informed of the options and that is my beef. By the way, I can see that you have severe grammatical errors in your comments and you are oral? Hmmm..no more comments. Candy, you don’t even know half of the facts about DBC. There is a lot of strategic planning going on that focus on reaching out to parents. You need to realize that DBC is at an infancy stage and a lot of growth and re-framing have been happening. DBC is having a first annual educational conference this year welcoming prominent speakers who will hare more details about bilingual education. It will empower the Deaf community to be more involved in their local community to give parents of Deaf babies more support. DBC has been working hard to raise the awareness of the needs of Deaf babies. It doesn’t make sense to advocate hearing babies to sign and to deny Deaf babies not to sign. Research shows that hearing babies being exposed to signs have more benefits and it does apply to Deaf babies as research shows. Melissa, I never said for you to accept all Deaf children learn ASL and that is the best and only way to go. All I am saying is to expose both ASL and auditory/verbal training to all Deaf children (if applicable). I am a product of both and I consider myself successful. It is a myth that ASL hinders language development but you continue to cling on this concept which is the problem that a bridge cannot be built. April 7, 2008 at 10:33 am My english wasn’t great when i was using oral/SEE/TC….then when i learned ASL–my english was much improved….so oral/SEE/TC are out!!!my parents once believed AGB but that was in 1967 when i became deaf at age 2 by spinal meningitis….they didn’t know what to do with me…now my entire hearing family are signing pretty good & they realized & they ee ASL is a MUST..i thanked tham for believing in ASL—not AGB!!!!! April 7, 2008 at 10:38 am April 7, 2008 at 10:40 am Candy, you said that most of us support DBC are a product of TC just as I was! That may be true since ASL was an oppressed language that many MCE methods were used back in the 70′s/80′s. The TC philosophy has shown unsatisfactory rate of success since the methods used are not considered a language. Many research documents shifted to the use of Bi-Bi philosophy in the classroom showing more promising results. This is what DBC is advocating for and many of the members were former orals, former TC users, etc. who discovered ASL wished that they had acquired ASL during critical language learning period (ages 0-3) that would help them increase better literacy skills. April 7, 2008 at 10:59 am Will you admit and accept that there are many children who thrive with the AV approach who never learn or need ASL? I certainly have two living in my own house and could introduce you to many many more. April 7, 2008 at 11:09 am Barb Ok, let’s take out “the only way to go”. What exactly are you saying if you don’t believe ALL Deaf children should learn ASL? Once you add ASL to AVT® it is no longer AVT. So where do you support AVT®? April 7, 2008 at 11:15 am “All I am saying is to expose both ASL and auditory/verbal training to all Deaf children (if applicable).” Even though my parents do not expose ASL to my sister and me in our household, that doesn’t mean that we can’t shut our eyes and not see ASL whenever we incidentally come across it in public. I went to a middle school where there was a large number of deaf students using ASL, and my parents never told me not to look at them. Is that what you’re trying to say? You just don’t want parents to get angry at their deaf children with CIs for seeing ASL in any public places that they could come across by accident? I understand that there are some parents who will immediately pull their children away from anyone who uses ASL whenever they come across them by accident. However, my parents were never like that when I was growing up. ChrisH April 7, 2008 at 11:53 am “DBC, Barb Digi, Deaf/ASL/non-speak are still dicriminated Against AGBELL, school, Hearing Parents, blah blah.” Your information is wrong. ASL gifts for CI, Non-ASL, Oral, their families and interpreters. CI and Oral are always Deaf. April 7, 2008 at 12:21 pm Hmmmm… I would NOT say that “DBC, Barb Digi, [etc]… discriminated against AGBell…” The way I see it, Barb was discussing her beliefs which are backed up by the resources. Same goes for Rachel standing by her beliefs which are backed up by the resources. Actually, BOTH Barb and Rachel are right… OR wrong, depending on where we are coming from. I am not saying who is right or wrong ;o) Yes, I did notice a few heated statements (regarding the word “respect”.) So let’s find the common ground. We all want the best for the deaf Then make a compromise. ASL AND (NOT vs) AVT. How can we make them work together like tango? It seems AGBell and DBC are at odds with each other, sooo… what is the solution? Open-minded Deaf person April 7, 2008 at 12:48 pm Hi commentators, I am not surprised that there are 150 comments. As a former anti-CI whiner like some current commentators above who advocate for bi-lingual education approach, I have often seen or associate with many failures of CIers at the school but I have never associated with successful CIers. Bi-lingual educational philosophy was established at about almost same time when CI was first announced. Even Gallaudet President Now occured right before the new innovations. Indeed I opposed CI for babies or children as I felt being offended for being ASL Deaf. “I am fine, why fix me? I feel that I am no good in eyes of people who advocate for CI for babies or children.” That statement was how I often told my reason for opposing CI for babies or children. I was hoping for the failure of CIers but I swallowed so hard after learning that more prelingual CIers are able to function expressively and receptively like hearing people. Not only that, their academic intelligence level is par with hearing peers. Last of all, they are so happy which matters me the most. Once CI children master their spoken language, they are automatically enrolled at hearing classes without any interpreter but they use portable soundfield system. I remember very well that there was a newspaper article from CI expert at John Hopkins University that it costs cheaper to have CI for babies in long term. I disagreed until I learned about more successes of prelingual CIers than ever. Now I agree with the article that it is cheaper to invest on prelingual CIers than prelingual non-CIers. Why? No need interpreter….as they are able to function at hearing school well. I am an educated ASL Deaf person but I don’t live independently because I lack my skills in spoken language that I have to depend on interpreters so often. For your info, successful prelingual deaf CIers can be my interpreters if they want to. Hence, interpreters are my leeches in life in aural/oral settings such as doctor visits, workshops and many more. Therefore prelingual deaf CIers are more marketable than prelingual ASL deaf people like me since they have lot of choices than mine such as universities or career they want to go. They can be teachers of hearing tudents while I can’t because I need a leech which cost insubordinately high. The job opportunities are greater for prelingual deaf CIers than prelingual Deaf users. So hearing parents of deaf babies see me as hopeless citizen even though I have a college degree because I lack my spoken language. Therefore, almost all of them choose CI for their babies. It is a sad fact that the number of deaf population at schools for the deaf have been drastically declining especially intelligent deaf tudents. I hate to see this reality as I cherished my time at deaf chool. What should I do? I have to accept and move on. Rachel’s blog really hit me so hard that educate me about the lives of uccessful prelingual CIers as I can see that she has nothing to hide about the dark side of CI even though she had to have another surgery to replace the deficit part. It is amazing that she accept to go through pain to fix her CI. It tells me that she cannot live without the breeze of sounds and discuss how beautiful the sounds are. I am living in a fish bowl watching how people enjoy the breeze of sounds uch as noises from animals or music that I cannot understand. For DBC, I challenge you. Will attendees be majority group of hearing parents who have prelingual Deaf ASL people, prelingual Deaf ASL of hearing parents and prelingual Deaf ASL deficit CIers of hearing parents? Do Deaf people of Deaf people have rights to tell deaf children of hearing parents how to raise their children where ASL is hardly accessible in their home environment? Why are you following AGB convention? It tells me that your organization is a tail of AGB so you have to follow where AGB convention. Therefore you are leech of AGB. Last of all, can you survive in the world without leech(interpeters)? I advise you not to follow AGB or you are fools. CI are here to stay forever and I hate to say that Deaf Culture is getting smaller and Before I stop keying, I, an ASL Deaf educator of hearing parents, tell you that I love ASL Deaf people but you know that there are times that we, ASL Deaf people with lack of spoken language, are frustrated because we are Deaf…no..no..I mean…we have to depend on leeches(interpreters). I know some of you and I am not going to tell you who I am. I admit that I envy for better opportunity and technology for today deaf children that we have never had. So it is time to wallow so hard, move on and do something better things than hounding on AGB people. April 7, 2008 at 12:51 pm Melissa, all I know coming from research and Raychelle’s v/blogs is that 1/3 of CI children “fail” from AVT. Really, I am happy that the remaining number which seems to be more than a majority is successful. It is not my issue about this success group but about the remaining 1/3 who did not make it. If they all were exposed to ASL, I bet the numbers will show even more success in mastering English. These unfortunate 1/3 of AVT kids could have continued to succeed at least with written English. California Grandma: I experienced AVT and ASL when growing up. There is no need to pick one over another. Rachel: What I am trying to say since the beginning that there will be more benefits when Deaf babies acquire ASL as a first language and learn to listen and speak (if applicable) as they mature with vocal chords. when you said that there are some parents who will immediately pull their children away from anyone who uses ASL and this is an act of prejudice. Prejudice is taught and learned, not born with it. It makes me wonder what kind of message are they getting? It is my intention to break down the barriers that exposing AVT children to ASL is not going to “ruin” their speech or language development. I am really glad that your parents are not like that by “blocking you” from using ASL since it is your choice. You obviously feel comfortable with that and that you were granted to make a choice. But what I don’t quite understand is that your mother is being biased since she clearly supported a research tatement that ASL hinders language development and that may have influenced her to raise you when thinking that way. April 7, 2008 at 1:02 pm “But what I don’t quite understand is that your mother is being biased ince she clearly supported a research statement that ASL hinders language development and that may have influenced her to raise you when thinking that way.” She is saying that she believes that if the child LEARNS ASL while learning to hear and speak will hinder the language development. The reason is because if my parents and I took the time to learn ASL, it would take our time away from my learning to develop good auditory kills and speech skills. Every minute of the day was crucial for me to learn hearing and speech as my hearing was not as perfect as other normal hearing people, and she just simply didn’t want that to be taken away. April 7, 2008 at 1:04 pm well,open-minded Deaf person, then tell AGB people included you to leave DBC people alone…do your job and we do ours…but i support ASL/AVT for CI users we will not abandon them who is failing to hear & peak…period…thats why its our job to fight for our future Deaf children with CI so ASL needs to be provided April 7, 2008 at 1:06 pm How can ASL be a deaf baby’s first language and spoken English their econd language and, at the same time, have them master spoken English, and I’m talking about language and speech, to the same degree that AV children do? There are very few hearing people who are as fluent in a econd language as they are in their native language. You will have to provide me with significant research studies out of institutions other than Gallaudet or RIT to convince me that, somehow, deaf children whose hearing is their weaker sense, can somehow fully master spoken English as a second language. As I said, I consider mastery of spoken English to include language and peech, not just written language, because the fact remains that we are a hearing and speaking society. This is not prejudice but fact. I am very thankful that my girls developed very clear and natural speech because I strongly feel that it makes their lives in the hearing world easier. If they were relegated to written English, Jessica would not be attending the private school where she currently is thriving, and Rachel would not be the Features Editor of her college newspaper because, in order to do so, she needs to communicate orally both in person and on the phone with the rest of the newspaper staff. As a hearing parent who did my research into the various approaches early on by meeting parents and children in person who were using the various approaches, I can tell you that even then, 20 years ago, there was no comparison. Now, with the CI, there are even more AV children like those I met 20 years ago. As I said before, hearing parents are going to meet kids like Rachel and Jessica, and, because they can hear these children and speak with them, the choice will be obvious. Your approach is going to be a very hard sell for any hearing parents who do their research by meeting kids in the various approaches. Finally, you ask about the 1/3. Where is the research data showing that 1/3 of children who work with Certified A-V therapists following the actual A-V approach, ie not a Cert AVT working in a school for the deaf (I personally know one who fits that description) are not successful? My personal experience is around 5%, and those 5% are identified early and guided into other programs that are a better fit for them. April 7, 2008 at 1:09 pm To Open Minded Deaf person, it is hard for me to take your words eriously since you remain to be anonymous and has no credibility. Anyone can say that and pretend to be someone else. Unlike me, I don’t hide my identity and many people know who I am. As for your questions addressing DBC, allow me to answer them. We are just forming and it is not even one year old. There are a lot of uccess stories when it comes to DBC rallies at places where it advocates AVT only. You would be surprised how many people including attendees of AG Bell seeing the flyers with research statements showing how ASL benefits Deaf babies. It is all about educating the public and the attendees and there is nothing wrong with that. The registration is free and OPEN to all parents. DBC has been working on developing more ervices to provide parents support to learn ASL. Please see my blog: DBC is not in the business to tell hearing parents how to raise their children in ASL environment but to INFORM them about research facts of using ASL in their home. Also, don’t think that DBC is against the idea for children to speak. It is ideal for Deaf children to have ASL, intelligible speech (if applicable and high writing skills. This AVT service is against ASL. It is not about for DBC to be against CI. Please don’t rush to judgment before you make such statements. Read more about DBC and talk with one of the members, can you? Show me how open minded you are. It is funny how you call interpreters and DBC leeches. I am laughing so hard because it is so far-fetched! Hey, come one and let’s suck the blood out of you that will give you more health benefits! ASL-AVT April 7, 2008 at 1:17 pm What??? (Gasp!) Barb, you said to Melissa “All I am saying is to expose both ASL and auditory/verbal training to all Deaf children (if applicable). I am a product of both and I consider myself successful.” I always thought you were a product of ASL/ORAL, but I never knew until you told Melissa that you are a product of ASL/AVT. Since you make an emphasis that you are a ***successful*** AVT product, why not seize a golden opportunity to be implanted to hear people speak, laugh, cry, ing? “Two best worlds” is better than one world! April 7, 2008 at 1:29 pm Rachel, you know it is a funny thing because I am thinking the opposite. Since ASL is an accessible language for ALL Deaf babies, this hould be used first because at that time babies are not ready to develop auditory skills and speech skills until 18 months or so. It is much more beneficial from birth to that time to expose ASL and by the time babies are ready to speak and listen, they will have a lot more chances to develop a better spoken language. See research statements here: “Baby’s brains that are exposed to a second language and learn it, such as ASL, develop further than baby’s brains that are not exposed to a econd language (Snoddon). Teaching babies ASL can also help develop the eyes sooner in young children. This is because ASL is a very visual language and taking in information causes you to use the right side of your brain. While other languages that are not as visual as ASL causes you to use the left side of your brain. Babies who learn ASL are actually using both sides of the brain which causes building of ynapses (Snoddon). Children who are taught sign language has demonstrated better spelling and larger vocabularies than children who did not learn sign language. They also have a tendency to show better speech and communication kills. Baby’s brains that are exposed to a second language and learn it, such ynapses (Snoddon). Children who are taught sign language has demonstrated better spelling and larger vocabularies than children who did not learn sign language. They also have a tendency to show better peech and communication skills. Anne Websdale, a spokesperson for the deaf and hard of hearing ervices, has suggested that not only does signing help with language development but it can also help improve parent baby bonding (Saccone, 2005). Children also find it fun to learn sign language because it uses movement and they may pay attention more. This causes the motor parts of the body to develop much sooner than the mouth. Sign language can also help improve IQ scores and advancement in scores on English parts of exams. Learning how to sign is only an advantage for the child. It could NOT hurt their language development, it can only help. Not only can it help with language development but the child will also be bilingual at such a young age. Knowing ASL is also an advantage if the child were to come about a deaf child or adult. The child will be able to communicate with the child or adult and it can also be helpful in the child’s future as they continue to grow and choose a profession. The world is full of diverse individuals and knowing a second language can only benefit the child.” There are many more research documents proving that so please feel free to read more about it. April 7, 2008 at 1:36 pm Ha, funny you ASL-AVT! CI at my age was not reliable and completely available. What’s more, I was able to hear well with my hearing aid on my left ear that I considered myself hearing the same as CI wearers do but I won’t be eligible to be a CI recipient anyway. Oh yes I can even hear laughs, cries, bird chirping and what-nots but it is not as important as having strong written English skills. I grew up in a public school without interpreters or leeches as Open Minded Deaf person put at it (*chuckling!*) but I also grew up using ASL as my first language and I can verify that ASL does not hinder language development. You can read more about me at April 7, 2008 at 1:42 pm Hey Barb, You’re a member of DGB so is John. We’re listening. We’re talking to you. I believe that’s open minded enough. I can be open minded and not agree with you. I don’t think changing my son’s program is a prerequisite. Are you saying that only if AVT no longer exists and parents like myself stop using AVT will mean we’re open minded?? AVT will not add ASL to the program. The program works as it stands. In education, there is not one particular methodology. In educating the deaf, there is not one particular methodology. You’re 1/3 stat is unsubstantiated. That’s just not going to cut it here. So I will say this again. I support your decision to provide bi-bi approach to your child and to advocate for it. It doesn’t mean I will do this with my own child. That does not mean I’m “against” it. I support a parent’s right to teach their child English and French. It doesn’t mean I’m going to do this with my own child. The problem here, Barb, lies the fact that you and DBC will not make parents like me use ASL as my child’s primary language. It’s not going to happen. You’re not going to change AVT. It’s not going to happen. If I were a parent you knew personally, and my child was deprived in any way, I’d expect you to say omething. He’s not. The others I know are not. There is no reason for you and DBC to try to dictate here on this blog what we should do with our children. Enough is enough. Don’t comeback and say….oh we’re (DBC) going to keep trying to build bridges with open-minded parents…..We have chosen a different path for our children and as many have pointed out it’s ok. And now that you say you were raised AVT and ASL. Tell us about the AVT program you were in under the guidance of a certified AVT therapist. The goal of AVT is to provide spoken language as the primary language. So this met the needs of your family? I was assuming that being born into a deaf family would mean that of course you would want ASL to be your primary language? There has been a family with a hearing impaired mom and a hearing dad at our center. The mom wasn’t able to provide the needed language model, but she still wanted this program for her child. The grandmother and father provided the AVT training for the child. She of course spoke to her child and provided imput throughout the day. It worked great. She just needed help to get it all done. So please do explain, how you were provided this therapy? April 7, 2008 at 1:50 pm I have to say something… As a deaf mother of two deaf children (son as a late-deafened child and daughter as a hard of hearing child), I have seen at how ASL really benefits my daughter who has excellent speaking skills (not perfect, but she can easily talk to neighbors and the neighbors easily understand her… something I lack.) And her first language is ASL even though she ENJOYS going to the speech therapy at ISD. She does not have a CI (she does not need it, since she has plenty of residential hearing.) My son… is a different story… his first language is English and he has near perfect speaking skills and his auditory skills are excellent. BUT… as he matures, he sees the need to rely more on visual aids (he uses CAN and he was really upset at being informed that his ASL interpreter was being let go.) There are always some degrees of visual and aural skills in the deaf children… The deaf babies tend to be more visual, so their first tendency is to manipulate things visually. That I understand…That is why I feel exposing deaf babies to ASL or any kinds of visual cues is the main key to the development of cognitive skills. IF combined with AVT (how it works, I don’t know…), it could help develop auditory kills better… not hindering language development at all. Maybe the timing and application of AVT and ASL, etc. without overwhelming the deaf babies’ brains? Also, there is more research that ASL does help improve the speaking kills (in older children… but… it is something to look into.) Again, as we all know… there is a need for a lot of involvement in the deaf child’s life to ensure the success… CI or not. Let’s say the deaf child could benefit greatly from having BOTH visual and aural kills…ASL and AVT/oral? Remember I am not a professional. Just my opinion. I am not taking any ides… all the sides have points and it is a matter of fitting the puzzles together… April 7, 2008 at 2:06 pm Karen Mays, I see the same as u do. I believe that by building the bridges and to prevent any children from falling through the cracks is to working together by providing AVT and ASL. It doesnt do anyone any good by saying no to the ASL/AVT approach becuase it will just continue to divide everyone even further. I do not like to see that. If u had asked me 15 years ago, I would have agreed with Rachel and Melissa on everything but as I learned ASL and became involved with the Deaf community, my views changed. I see the value in ASL. I wonder if they learned ASL, would their views change? Who knows? Great posts, Barb! :) April 7, 2008 at 2:26 pm I keep reading something in this post that has been referred to often and is not being directly addressed here. I understand where Barb DiGi and Karen are coming from, one as an ASL Deaf adult of Deaf parents and the other as a Deaf mom to two HOH children who have developed auditory kills and use ASL as an additional language. Keep in mind that 90 to 95% of deaf children are born to hearing parents. I’m one such example. There are three other siblings, all hearing, in my family. My parents had their hands full aplenty, raising four kids, dealing with my deafness and communication issues, in addition to another sister who had psychological problems and was a major handful to raise as well. Do you think such hearing parents would have had the time to learn a new language(ASL)between speech clinic sessions, the merry-go-round of psychiatrist appointments, my dad’s job which entailed some traveling, and raising four kids? Sheesh, I’ve often wondered how they did it at all. There is so much time in the day and today it is far more common for both parents to be working jobs in addition to raising children, deaf or hearing. I’m not saying here that CI’s and AVT are the easy way out, that indeed such a decision for a deaf child requires parental involvement and commitment in order for this process to be successful. I can also see how implementing ASL requires a time commitment on the part of hearing parents to learn and then teach their deaf child this language in the home. This is probably time the parents can’t even pare, that’s the dilemma. Not to mention that they also need to give time for other kids, if any, in the family. April 7, 2008 at 2:40 pm Hey back to you mom2boys: It is DBC not DGB by the way. There are a few things I need to have some points straightened out. We both are here discussing our points of views not DBC or me to dictate the blog as you have indicated. I am appreciative for us to have a dialogue and to me, it is what it takes to be open minded as long as we treat each other with respect. All I want is to have you to recognize that there are research facts showing the benefits of ASL as a first language acquisition rather than shunning this language out of Deaf children’s lives because of the fear that it will hurt or hinder Deaf child’s language development. I consider myself open minded here because I am not shunning anything as I strongly support all approaches but to see how one bashes or blames on ASL for hindering language development or reducing the success rate on AVT is where I need to jump in because I wanted to show that it is a myth. AVT will not add ASL to the program is wrong to me but right to you. I am here presenting the facts why AVT should add ASL but you kept on denying that it will be beneficial. Flash news for you: The program DOES NOT ALWAYS work which is why we are concerned. We care much about Deaf babies and want the best for them. I don’t have the research documents here with me about how 1/3 tatistic results came in but I can tell you the source that I have learned came from Raychelle’s blog. Let’s say it is true, would you upport bi-bi approach to begin with? I am not talking about your child or mine but about these kids who are not achieving under AVT program. It is like taking a gamble because there are always kids who don’t achieve under AVT and it is best for them to already have a strong language foundation, ASL, that is, to help them achieve building a bridge to English. Again, let me emphasize that DBC is not going to tell parents how to raise their children but to inform them the facts and benefits about ASL because too often this has not been shared equally by doctors, audiologists, early interventionists, etc. Too many parents are clueless about the facts of raising their Deaf child(ren) bilingually. It is a matter of voicing and that parents have the right to know ALL choices. You tone in the middle is not necessary. DBC will always build bridges with parents especially who have open minds since they are more receptive to the information that is presented. No where did DBC said about not building bridges with parents who support us advocating bi-bi (like you said) but they have decided to chose a different path as long as it works for their Deaf child(ren). Well, I believe the term, AVT, wasn’t officially coined at that time when I was little but the practices were similar to today’s AVT that I have to practice listening the words without lipreading and without igning when being immersed in spoken language environment. I grew up with a Deaf family but with hearing grandparents so the goal had always been mastering spoken language and ASL just like my Deaf sister’s. We always play around with spoken English and ASL. We are able to sign ongs in ASL when listening to the lyrics. We both won first place for best talent when signing songs in the state pageant for the Deaf. I am always grateful to have the best of both worlds and what is wrong with that? Thank you, Karen, for adding your perspective. April 7, 2008 at 2:42 pm Ahhh… I am like you, Ann_C… I was born to a hearing family and attended Central Institute for the Deaf (nope, I don’t have any bad memories… in fact, I enjoyed CID and I was not happy to having to go mainstreaming. :o) ) Well, my hearing parents were very involved in my education. So I do understand the need for CI by hearing families. I understand that there are many different approaches and that one size shoe DOES NOT FIT all… that I understand. However, we are seeing the rising numbers of successful ASL users and CI users so it would be nice seeing ome kind of partnership there. But yes, we live in a hearing society numbers of mainstreaming deaf children, etc. I don’t know… but Ann_C, yup, there are factors for the families who feel they do not need ASL. April 7, 2008 at 2:53 pm To respond to Ann C’s concern about parents using ASL: Parents don’t have to be fluent in ASL right away since there are many parenting tools for communication through the use of ASL. See my blog: Like Mark Drolz at http://www.deaf-culture-online.com/baby-sign-language.html said, ” No, you do not have to put in the 5-10 years it takes to become fluent in ASL–just 100 or so signs will be enough for your baby. Nonetheless, it’s best if those signs come from an actual language. ASL has so much more to offer than any system of made-up baby signs. First of all, if your baby sign language program incorporates ASL, you’ll be on the same page as countless other parents and their babies. You’ll be able to sign with them and they’ll be able to sign with you. Second, this is a wonderful opportunity to expose your baby to another language and a culture. We all know that the younger you are, the easier it is for you to master more languages, musical instruments, and old dog new tricks”). This is an exciting, stimulating way to engage your baby’s mind. Would you rather do so with a made-up set of baby igns, or an actual language, ASL?” The Signing Time series teaches more than 75 signs and exposes you to over a hundred is an example of one of the communication tools. April 7, 2008 at 2:56 pm Oh, let me tell you something… Barb DOES sing. She’d tune the car’s radio station, and then she’d find it, and then she’d sing the song… he has a good ear for the lyrics. That was when I lived in Rochester, NY. Now she is engaged to a deaf musician… so music is very much part of her life ;o) So she is correct in stating that she grew up similar to the way CI children are growing up now. April 7, 2008 at 2:58 pm Barb, you said: “It doesn’t make sense to advocate hearing babies to ign and to deny Deaf babies not to sign.” That’s true and I agree with it but what does it have to do with AVT? There are still many parents out there that have not implanted their child and are using the oral method – I can see where you might want to advocate towards these parents. What you and I went through with speech therapy years ago is nothing like AVT at all. So, we shouldn’t be comparing that. I agree that to expose ASL to babies is an excellent idea. But, parents who decide to implant their child should stick to practices that have been found to benefit C.I. to its fullest potential. Are you insinuating that parents of C.I. Child should consider ASL in addition to AVT? Because if that is the case, it wouldn’t be AVT at all o…why bother to push this idea of incorporating ASL with AVT? April 7, 2008 at 3:06 pm Hmmm… I know that ASL helps improve the aural skills… but for older students. But are there any research that adding ASL to AVT have been shown some benefits to the babies from birth to 3 years old? If the links have been added, I am sorry, don’t you mind putting up the links again? I did go over http://aslci.blogspot.com/ and I did see that K.L. posted about it, but that is from her personal view. So are there any professional research? April 7, 2008 at 3:11 pm Thought maybe some would be interesting to read this; MAC and IBM Computer – Same? – Different? Deaf and Hearing people – Same? – Different? This is my analogy about how Deaf and Hearing adults or children or babies are created differently just like a Mac or IBM. They, hearing and deaf people are the same in very way just like a Mac or IBM. But the only difference is the software program. The software disc that you put in the Mac or IBM computer got data information that the Mac or IBM understands what it written(embedded) in it and functions according how you communicate with the keyboard. The software disc could be Word processor program, accounting program, video game program, drawing program like Photoshop, etc. Hearing and Deaf people are human bionic-computers. Before I go any further explaining more about what I will write on this post, you might ask this question, what is a bionic-computer? Bionic-computer is a human being that its brain can compute to do things such as like calculating the coordination while walking or picking things up, etc. Your brain is always computing like a calculator doing the adding, subtracting, etc while controlling your balance, reaching for something, jumping or hopping over something, etc. No one was born as a full functioning bionic-computer human being. Keep in mind that we all had to learn to crawl, walk, talk, sign, run, respond, think, etc since the day we were born. Our parents were the main educators, motivators, etc in the beginning of our lives. Then teachers, your peers, people, media, TV, etc became additional educators, motivators, etc. This process is the education of our bionic-computer body(mind) that goes on until the day we die. One more thing that I want to say about the terminology of the two words; Software and Hardware. The computer that you are using right now while reading this post is call hardware. The disc that you put in the computer contains data so you can watch movies or video game or Microsoft Word is call software. The Human Bionic-Computer is the hardware of the human anatomy. This would include the brain, internal organs, and other human organ systems uch as Cardiovascular, Endocrine, Immune, Muscular, nervous, Reproductive, Respiratory, Skeletal and Urinary systems. Your bionic-computer has stored program properties and self- metaprogramming properties, with limits determinable and to be determined. You might ask, what is metaprogramming?? Metaprogram is defined as a set of instructions, descriptions and means of control of sets of program. How did we get the metaprogramming properties? You got them since the day you were born, from your parents, teachers, etc. It is the software education that you have and it is stored in your brain. Now, let’s go back a little about what I wrote above; The bionic-computer has stored program properties and self- You might ask, what you mean by with limits determinable and to be determined.?It means that it depends on how you have been educated, how much data flow you have gotten or able to receive from your parents or teachers in early childhood, etc. It could also means that it depends on if you are deaf or hearing. In this society now days, a deaf person will have a good chance to get into the phrase of with limits determinable and to be determined. This is very, very important to keep this in mind as you read on in my post. The title of this post is This is the same as if I had said, Deaf and Hearing Babies – Same? – Different? What is really the different between a Mac and IBM computer? They both look alike, same hardware, functions the same. They both have low level, average level and high level performance. Just like in the society, we have low level, average level and high level minded human beings. You might ask, why do we have three levels.?With the computers (Mac/IBM), it depends on the speed of calculating, the amount of ram memory and the software program.?With human being (bionic-computer), it depends on the early childhood of language foundation, how much you’ve learned the software program. You might ask, what was our human software program? Well, for a hearing baby, it was the data flow of informations that enter through the ears. And for the deaf baby, it was the data flow of informations that enter through the eyes. This means that the hearing baby and the deaf baby, both have different type of software input for eyes or ears. The software makes our bionic-computer to function and the more data flow of informations that each receives through its eyes or ears, will categorize each of us accordingly as low level, average level or high level minded person. Macintosh are the Deaf baby. IBM are the Hearing baby. Hearing and Deaf babies, both require different software to be able function for its highest potential capability to learn… the earlier, the better. This is why Deaf babies and children must have bilingual education- ASL/English(reading and writing) to be able learn to achieve the level at its highest potential capability. These Eye software input bilingual education program are for babies that don’t have the natural Ear software input capability. Over the years, we, the deaf people, or should I say, the Mac computers have been using the IBM “ear” software indoctrinated by the o-call-experts ( i.e. AGBell ) thinking that we deaf (Mac) people could hear and speak 100% like hearing (IBM) people. The Deaf babies have been deprived of having the use of appropriated oftware program to be able to function fully like hearing babies since 1880. Parents of Deaf children need to grasp this simple concept. Well, I couldn’t get to publish my comments to respond to Ann C since it is not coming out. You can always visit my blog at http://www.barbdigi.com to continue the dialogue since I don’t want to “dictate” Rachel’s blog as being accused by one of the commenters. So long! April 7, 2008 at 3:17 pm Thought some of you be interesting reading this; You might ask, what is metaprogramming? It means that it depends on how you have been educated, how much data flow you have gotten or able to receive from your parents or teachers in early childhood, etc. level minded human beings. You might ask, why do we have three levels. With the computers (Mac/IBM), it depends on the speed of calculating, the amount of ram memory and the software program. With human being (bionic-computer), it depends on the early childhood of language foundation, how much you’ve learned the software program. April 7, 2008 at 3:19 pm Oops, Please delete the last two “Deaf and Hearing people – Same? – Different?” Thank you I’ve asked for the same thing. I was told if ASL was added to AVT, it wouldn’t be AVT at all. Karen, did you read the latest PDF research link that Melissa provided? I suggest you read it. Fact here is if I had a deaf child, I would not go the CI route at all imply because deaf genes runs in my family and I’m comfortable with Bi Bi approach for now. I might even add AVT too if my child has residual hearing. I might even throw in hearing aids since it works great for me. But, that’s me, based on my experience and based on my family’s genetic deafness. WE know what to do. But, for parents who do not know ASL and who have done research and decided they want to go CI route. It has been proven that in order for CI to be successful for the purpose that it was intended to be, AVT needs to be part of it and that ASL should not be exposed. There’s no way a parent can go back to the providers and complain if the implant didn’t work since they didn’t follow the recommended practice. Same with any medical procedures. If you don’t follow what is recommended, then you can’t expect things to work out the way its upposed to. April 7, 2008 at 3:23 pm AVT stands for Auditory Verbal Training, this means it is based on 100% auditory so I do not understand how ASL can fit in with the AVT process. If you added ASL to it, then it is no longer AVT because it would not be 100% auditory based. It would have a different name to the method used so it is my opinion that trying to add ASL to the AVT process its basically a moot point. The bigger question is whether AVT is the best method for CI implantees and thats where I want to see an unbiased research document, because as I said earlier, if it is 50.1% success, then that number just isnt good enough for me and if that number was applied to hearing people, you would see an outcry in Congress over it. What I was trying to promote earlier is the fact that baby signs are used before the AVT process begins so the baby starts the language development at an earlier age and as the AVT process is used over time there is a transition where baby signs, which is based on ASL, are weaned away as the child is able to communicate back verbally. Of course, if the child liked ASL enough and wants continue to use it, then feel free to do so. Now there are some comments/questions that I wanted to respond/ask to ince my last post. hear, considering you’re in Atlanta, it has me wondering if your girls peak with a southern drawl and/or accent? urprised if AVT programs actually existed when you were a child although I can understand if you say you were a product of an oral education program but was it actually AVT? We’re talking about two different “schools of thought” here. and my hat is off to you, a clarification needs to be made in this comment. “If they were relegated to written English, Jessica would not be attending the private school where she currently is thriving, and person and on the phone with the rest of the newspaper staff.” There are deaf children who’s primary mode of communication is ASL and they do attend private schools, and this includes some of the most prestigious colleges in the country. As for being an editor, someone please correct me if I am wrong here, but I somewhat recall reading omewhere that there were actually many deaf editors of newspapers before the Milan conference in 1880? We are living in the age of technology where emails are used just as easily as a phone call. I just wanted to bring this up because your statement could possibly lead others to beleiver that signers would not be able to do the equivalency and they are indeed capable of doing so. On the flip side of the same coin, I know of several successful hearing businessmen, but their written English is quite below par. They rely on their speaking abilities and often referred to being “street-smart” and they usually try to avoid emails because they are too embarassed about their written English. April 7, 2008 at 3:30 pm Barb – disgrard my last question, you answered it in #175 as I was typing my last response. April 7, 2008 at 3:36 pm Thanks, Candy… I am looking for it now…. April 7, 2008 at 3:46 pm In Ontario, Canada, there are AVT therapists who tell parents that if they expose their babies to ASL, they will be kicked OFF their client lists. There are MANY parents who would love to provide both ASL and AVT therapy for their babies, but are often intimidated. They either toe the AVT line, OR hire ASL tutors on the sly so their AVT therapists don’t find out and boot them off their client list. If that is not coercion, and not telling parents how to raise their Deaf children, I don’t know what it is. That is why I, as a Deaf educator, see CI students who have not benefitted from AVT therapy fall through the cracks. Those children have not had the benefit of ASL as a afety net. Too many children in USA experience the same lack of exposure to ASL even when implanted and struggle with AVT therapy. DBC has been formed to ensure that children are able to receive the benefits of ASL even with CI and AVT training. I am opposed to AVT as the ONLY venue to language for children. Parents can expose their children to AVT therapy, but please DO NOT deprive them of ASL as a first or second language. I do not believe that ASL harms the development of spoken English. Read the research material that Barb has provided. Questions to Melissa who stated, “You will have to provide me with ignificant research studies out of institutions other than Gallaudet or RIT to convince me that, somehow, deaf children whose hearing is their weaker sense, can somehow fully master spoken English as a second Do you realize that Gallaudet and RIT are places that SPECIALIZES in Deaf Education and Deaf-related topics? Are you saying that Gallaudet and RIT research information are not good enough for you? Are you aying that you would have more respect for that research IF they came from hearing universities that have NO expertise in the field? Please clarify your position. I sincerely want to know. Shel April 7, 2008 at 4:26 pm Some of you are hollering, “One Size Shoe DOES NOT FIT All” EXACTLY! Back in 1880 Milan along with AG Bell wanted “Oral Only Method”, which hould have applied to the natural language(ASL) of the Deaf but instead, they eliminated it totally. And got rid of all the Deaf teachers. Just where some of you get that concept that terminology “One Size Shoe DOES NOT FIT All” while AGBell did used that ideology of “Oral only method” which is “One Size Shoe DOES FIT All”, not “One Size Shoe DOES NOT FIT All” which is true. Even today AGBell/AVT and its associates tell parents of deaf babies to focus on one method “Oral only method” which is the same as “One Size Shoe [“Oral only method”} DOES FIT All”. Paotie April 7, 2008 at 4:58 pm Rachel .. I’ve been accused of somehow being audist towards Mr. Egbert because of my English use, so you’re not the first person he’s criticized before. I do want to direct you to an article that dissected Mr. Egbert’s bloody of a pulp book of fiction called, “Mindfield.” The author of the article is a well-known Deaf blogger from DeafDC.com. Quotes regarding Mr. Egbert’s book: “By page six I wanted to throw the book in the trash. Though usually I have a 100-page rule in which authors have a hundred pages with which to capture my attention, the spelling and grammar errors and typos alone were frustrating enough without the stilted and artificial dialogue style and the unimaginative wording that felt cribbed from a dozen other conspiracy theory novels and stitched together here.” “Unfortunately, instead of turning this into a human suspense novel at this point (which is something the best thriller novels do), Egbert veers toward the conspiracy theory thread, portraying Halley as a helpless brainwashed victim of the corporate powermongers who lead AG Bell.” “For a book that’s supposed to spread understanding in the minds of clueless hearing readers, that was a severe misstep. Now they have no reason to understand why oralism-only isn’t always a great idea, and they do have reason to think deaf people, even the ones intelligent enough to write a book, are incapable of making a reasoned or convincing argument.” Click here. I didn’t make this up! Gawrsh! No wonder the DBC still sucks! :o) April 7, 2008 at 5:08 pm Paotie, I have many hearing students that read the book from University of Minnesota and their testimonials have said that they now understood about ASL and Deaf Culture. Have you read the book? April 7, 2008 at 5:11 pm A bit of history tidbit here: Did you know that there were a lot of deaf teachers back in 1880′s and then when the Milan conference started with Edward Miner Gallaudet and Alexander Graham Bell in Italy — they argued back and forth about ASL and oralism. AG Bell subsquently won the battle and many of these deaf teachers lost their jobs. Now we are seeing history being repeated again here with AVT. How can we deaf teachers work with these deaf children if ASL is forbidden? You’ll be laying off a lot of these deaf teachers and para-professionals which is not good. We’ll be out of jobs and then what do we do? Deaf children need deaf role models. They need to see that we are here, we are capable of doing things and that we are just fine as they are. When I grew up, I NEVER saw a deaf adult until I reached to middle school and I finally met deaf adults. How did that make me feel? Relieved of course as I didn’t know what I would be when I grew up. You are the ones who are building the wall against us, not us. April 7, 2008 at 5:12 pm I know ASL, Oral, and CI are always deaf. Barb DiGi accused my hearing parents and hearing parents ABUSED & NEGLECTED CI and oral children. She is wrong and misunderstood. My parents raised me as good family. Barb also said Oral are BRAINWASH, BRAINSICK, LOW-MINDED, blah blah….. Look at me *I have good brain* ABUSE = Violence means hurt children You can LAUGH…I don’t want to buy your sick yellow T-Shirt with picture Deaf Baby with Cuff. ummmm no comment. April 7, 2008 at 5:13 pm John .. I have read excerpts of your book. That was terribly too much. John and others, You and others know that many mean pick an approach and stick with it. If I choose to have my son’s primary language be English, why would I then make ASL his primary language….which is what you are promoting. DBC, please excuse the slip earlier, IS saying that they believe ASL hould be the PRIMARY language. As Older and Wiser said, AVT wouldn’t be AVT if you add ASL. How would an auditory only approach then turn around and add ASL? It wouldn’t be an auditory approach anymore?? Again I must speak from my experience of 4 years at the same AVT Center…..the therapists know within a limited amount of time if an auditory only approach is working for the child. They evaluate the child on day one. Evaluate at each session. Make detailed observations and notes. Know if you’re doing your “homework”…..because the child is evidence of the work you’re doing with him or her. Meet as a staff with any questions or concerns. It’s constant communication, feedback, evaluation, etc. They DO NOT keep a child in a program if it is not working for the child. They, too, want the child to have language, and if AVT isn’t the right fit, they are the first to admit it. These therapists at our center are certified AVT. They have tons of training and were either teachers of the deaf or SLP’s with Master’s degrees and experience prior to certification. They do not have to hang on to clients to make money, etc. Our center enrolls approximately 4 new children per month. It may be more, but I’d have to check. If a parent wants the program to work for his or her child, the guidelines should be followed. It is that simple. Someone else said that above. It works. Look at Rachel….do you think she’s anomaly? Couldn’t be I guess, look at her sister. Why can’t we all just agree to disagree. Call it a day. Do what we believe is best for our children. And, Why you keep saying that DBC sucks? What can you do to help about Deaf babies to learn a cognitive language that have been off course since 1880 Milan? You need to “Do It”……… “not motor mouth about it! Paotie, I know you can be very good about Deaf issue but you seem to enjoy more about bashing. April 7, 2008 at 5:16 pm And one more that I forgot to add: Parents are advised to spend many countless hours with their deaf child on AVT at home. They are willing to do this. But when it comes in learning ASL, they don’t want to spend hours in learning ASL. What is the difference?? Both require a lot of parental hours. I just finished reading a book, “Hearing Father, Deaf Daughter”, this father took his time to take classes to learn ASL so that he could communicate with his daughter. It is a very heartwarming and moving book. It proves that he was successful in communicating with his daughter and that his daughter was doing well in school that she became one of the top students. April 7, 2008 at 5:22 pm I ain’t gonna do nothin’ to help babies learn a cognitive language. If it ain’t my kid, I ain’t gonna do nothin’ about it. And you don’t need to tell me what to do, either, Mr. Egbert – I can think for myself. April 7, 2008 at 5:23 pm I’ve been hearing that a lot of hearing people complain that deaf people tend to live on SSI/welfare, well if we get laid off from our teaching/paraprofessional jobs, whose fault is it?? Think about it… Deaf teachers/paraprofessionals are here to stay. They want to work with deaf children but if AVT advocates in forbidding ASL, then how can we work with them when our hands are tied behind our backs. AVT teachers are literally stealing our jobs and taking away our ASL and working with deaf children because they know they can make a lot of money in that field. I don’t think you have thought about this. April 7, 2008 at 5:27 pm Answer to Older and Wiser - My girls don’t speak with a southern accent. Rachel actually lived in Boston until she was 4. Plus, my husband and I and about 55% of the rest of the area where we live are from the northeast. As a result, all three of my children, including my son who has normal hearing and was 5 months old when we moved here, speak with a neutral accent. I had mentioned in a comment to a previous post that Jessica could not attend the private school where she is if she couldn’t hear and speak because, at least in our state, the special ed laws do not apply to children whose parents voluntarily put them in a private school. The only accommodation Jessica needs is a portable soundfield system, which we had to purchase. If she needed an interpreter, she couldn’t go to the school unless we were wealthy enough to provide one full-time, which we’re not. Rachel certainly could have been an editor without hearing, but I doubt it would have happened so easily at her current school because everyone there communicates through spoken language. At the very least, being able to communicate orally with ease has facilitated her job. Chris April 7, 2008 at 5:28 pm It is all about stigmatation that AGBell succeeded among people that they should not spend any time with sign language, ASL. They know that these people will believe them. It is really sad. April 7, 2008 at 5:33 pm PAOTIE!…..WHAT! “I ain’t gonna do nothin’ to help babies learn a cognitive language. If it ain’t my kid, I ain’t gonna do nothin’ about it.” WOW! VERY SELF-CENTERED PERSON! YOU ARE, PAOTIE April 7, 2008 at 5:42 pm To Shelley in #189 - Don’t you realize that CID specializes in deaf education? So, if Barb and John and others don’t think that research coming out of CID is legitimate, then why should I trust research out of Gallaudet or CID? April 7, 2008 at 5:43 pm To a deafie in #200 - Yours is the most selfish argument I’ve heard. Those of us, both parents and professionals, who believe in AVT should not follow AVT so that we can save your job? What about the wellbeing of our kids? What about the jobs of the AV therapists? Why is your job what is the most important? Also, why is it that you think AV therapists are getting rich off of AVT? As a former board member of an AV center, I can tell you that nothing is further from the truth. They are paid as teachers are. Furthermore, our AV center is a nonprofit and so there isn’t a lot of money to go around. April 7, 2008 at 5:46 pm Oh boy. Okay, I am calling it a day… Enjoyed reading and making the comments. There is no easy answer, after We the parents want the best for our deaf children so we are their best advocates. The best advocacy skill is LOVE. April 7, 2008 at 5:47 pm I’m glad that Rachel has had success with her CI and her AVT therapy along with her parents’ commitment has made it possible for her to interact in spoken language with her hearing peers. However, many of us d/Deaf have encountered at least one oral or AVT “failure”, I hate that term– I prefer the term another commenter brought up, the approach failed the child rather– but am using the term that many readers are familiar with. No doubt deaf educators and counselors see more failure examples because the deaf education system is the “last resort” for oral/AVT failures today. These deaf individuals fell thru the cracks and didn’t gain the language acquisition early enough to be on par with their hearing peers in education. These are the individuals we’ve been discussing on this post, there’s no sugar-coating the fact that these people do exist. No program is 100 percent failure-proof, there is bound to be a failure rate whether it’s AVT, AV, oral, TC, and/or other methods. And there are many factors involved in each “failure”– lack of parental commitment, or a lack of therapy resources in a rural area, or the child may be a visual learner versus an auditory learner, or the age at which the child was implanted, or learning disabilities compounded with deafness, the list goes on. Many of us d/Deaf have acknowledged for a long time that there needs to be a backup or as I call it, a plan B, should there be indications that the deaf child is not picking up spoken language on schedule, or not on par with his hearing peers. Sign language is very visual for a youngster already using his eyes to make up for what he cannot comprehend aurally. ASL becomes “the shoe that finally fits” AFTER some or all the other hoes have been tried, AFTER it’s too late for the child’s language acquisition and then it’s catch-up forever after for the individual as he grows up into an adult. Not a wonder that ASL gets stigmatized, it’s the “last resort” language as well. April 7, 2008 at 5:56 pm Mr Dawson, aka, Paotie, you say; What do you care?…….How do you like to treat people or Deaf babies?……. it ain’t my kid, I ain’t gonna do nothin’ about it.”….. Look at yourself…. http://www.youtube.com/watch?v=P0G6kuojoWI The kind of person you are? April 7, 2008 at 5:59 pm During 1950′s, black people weren’t allowed to become a profession. Yes, Deaf teachers/paraprofessionals are here to stay. ASL is here to tay. http://blogs.nad.org/president/?p=13 April 7, 2008 at 6:03 pm Yes, Deaf teachers/paraprofessionals are here to stay and ASL is here to stay. April 7, 2008 at 6:05 pm hello April 7, 2008 at 6:33 pm I agree with Chris..it is about the stigmatization that AGBell has about ASL and why it is ok to use ASL as a last resort. I see hundreds of deaf children who are so delayed cuz of the AVT approach. If they had been exposed to ASL from the get go, whether it was at home or at the educational setting, they wouldnt be struggling with literacy skills. April 7, 2008 at 6:43 pm I waited to see if any one else would “call your hand” on comment #81 re: “natural voice quality”. If that is a measure of “success” with CI, then Rachel fails! I have asked several hearing friends to listen to the two recent videos Rachel has posted in which she speaks, and all tell me that Rachel’s peech and voice quality are adequate, but not “normal” or “natural”. I asked about several deaf kids we know and the report is that some of the deaf kids without CI speak better than Rachel and some of the deaf kids with CI speak more poorly. It seems almost universal that the hearing parents of deaf kids expect the CI to make their kids speak in a way that cannot be distinguished from their hearing peers. I have never observed this, yet the expectation persists. Having said that, speech quality, like lipreading skill, is *not* linked directly with intelligence and not strictly linked to hearing alone, otherwise hearing kids would never need speech therapy, but clearly some do. White Ghost April 7, 2008 at 7:10 pm Whoa! Over two hundred comments. I congratulate you for being the most controversial blogger! You should be getting the “Most Controversial Blogger 2008″ award from the Deafread! I’d vote for ya. :-) Way to go, gal! Chris, nice try for being harassed to all of us whom you disagree. I enjoy yours. That’s maravilloso! April 7, 2008 at 7:20 pm To David in #211 – Since you can’t hear for yourself how Rachel sounds, then you are not really qualified to pass judgment. Rachel’s speech is very clear. There is not a hearing person who has any difficulty understanding her. The only speech sound that she has that is not 100% is her R. No hearing person who meets her is aware that she is deaf. They occasionally ask her where she is from, but that is it. AVT provided her with excellent speech, especially considering that she heard nothing until she was 2 years 8 months old. Her voice quality is far more than “adequate,” but I guess putting her down makes you feel better. Why don’t you put your spoken voice on YouTube and let us hear you? Why don’t you ask your hearing friends to listen to Jessica, who was implanted at age 15 months, at http://www.youtube.com/watch?v=-Ae2VW6NMZE or another AV child at http://www.youtube.com/watch?v=aNFnpZAtK9c who was implanted at age 9 months, or most of the kids at http://www.youtube.com/watch?v=NjT9zOijyLQ&feature=related Only one of the kids on this video has a typical deaf voice, and even at age 15, which accounts for the difference. If they tell you that most of these kids don’t have a totally natural voice quality, then they are lying to you. Cindy April 7, 2008 at 7:22 pm People, You are smart enough not be be stigmatize by AGBell/AVT and its associates of their necessity because of their self-centered ideology, but it really seems that “you” prefer to be stigmatized by the “seemly” uperior type of these people rather than “genuine” type of people that have been through that reality. Please open your mind and see who is telling you the truth from their heart. Not their necessity of money. Which is more important, humanity or money? For your child? These people generated millions of dollars for themselves, not for your child… but from YOU!. And they say, THANK YOU! Morality ideology is who we are, and….THEY…. (AGBell/AVT) are more on the monetary side of ideology to help you. Sorry to tell you the reality that you are actually in this kind of life and you are in a very naive state of mind to be taken advantage of. We care about Deaf Babies and They (AGBell/AVT) care about your (their) money. Please think of your kids as much as we do with your hearts. We “were” like them too… before it was too late…but we survived. Realized later in life, April 7, 2008 at 7:26 pm Open-Minded Deaf Person, I’m sorry that you feel the way that you do, but I beg to differ with some of what you have written. I do not speak nor hear (100 dB loss in both ears, and I threw out my hearing aids years ago). I can use interpreters if I want to, but in all honesty, there have been many situations where, if there was no interpreter, I would still get by. I was a teacher of hearing children for two years, and I never spoke a word, nor did I have an interpreter (except for required workshops, which the school was happy to provide for me). The parents and students loved me and I had great evaluations! Don’t let anybody tell you what you can and can’t do. If you have the confidence and the self-esteem, you can do anything! And it doesn’t always require an interpreter! You may want to visit a Bi-Bi program to see what it is really all about. You seem to have some misconceptions about it. And in 204: “Don’t you realize that CID specializes in deaf education? So, if Barb and John and others don’t think that research coming out of CID is legitimate, then why should I trust research out of Gallaudet or CID?” CID is a school. Gallaudet and NTID are universities. There’s a big difference there. Ann 207: This is exactly why we advocate ASL first! So that they will have full access to a language first. It is very rare that ASL doesn’t work for a child, and if the ASL is dropped in favor of a better method (AVT or mainstreaming or whatever), then nothing is lost! April 7, 2008 at 7:29 pm Check out http://www.cid.edu/home/CIDatWUSM%20scientists.htm CID’s research department is affiliated with Washington University in St. Louis, a highly renown university, and their top researchers are all PhDs. To quote the website, “All CID at Washington University School of Medicine scientists listed have faculty appointments. ” They are at least as qualified as NTID and Gallaudet to conduct deafness research. April 7, 2008 at 7:36 pm Melissa and David, My hearing husband said the same thing about Rachel’s voice. Sometimes it’s hard to remove bias when it’s your own child. This is not meant to be an attack or criticism of Rachel or her voice, but David is not alone in this belief. Nobody’s going to put their voice on youtube because we have nothing to prove. Rachel’s video just weakens your (Melissa’s) statement about “natural voice quality” April 7, 2008 at 7:38 pm And, here is a profile of Ann Geers, whose research I cited. She is now in Dallas but used to be at CID: Dr. Ann Geers Dr. Geers received her Ph.D. in Pyschology from Washington University in 1977. She has a long and distinguished career with the Central Institute for the Deaf in St. Louis serving as a research scientist and Director of Clinical Services. She is an adjunct Professor in the department of Otolaryngology/Head and Neck Surgery at The University of Texas Southwestern Medical Center. Her research interests include the developmental evaluation of deaf children after cochlear implantation. Sounds like legitimate qualifications for doing research to me. If your only criteria for classifying her research as not legitimate or believable is that you don’t agree with her, then that’s hardly adequate. You’d better find someone with credentials equal to hers who has studied the same populations. Li-Li's Mom April 7, 2008 at 7:39 pm Hi Melissa! You asked about how those of us who use the bi-bi approach employ our teaching/learning methodologies at home, and referred to storytime. I think someone else explained that bi-bi approach refers to the learning environment at school, not a methodology. But in terms of how we fit ASL and spoken English into my family’s life, it goes roughly like this: In the car, when swimming, at the beach, at bathtime, in the mornings, at breakfast and while in bed, in crowds, across rooms, we sign together. Over dinner, at storytime (before in-bed storytime), when we dance and sing, when playing games, doing crafts and other activities using our hands, we speak English. In our family sign classes we support signing with spoken English (especially when my husband and I cheat, but our teacher is an excellent lipreader and pretty much always catches us), and in aural rehabilitation classes (at least 4 sessions a week my husband and I attend – we alternate or we’d lose our jobs – with our SLPs plus our own less formal speech sessions at home), we support many of the exercises and activities common in AVT with sign (all of our SLPs are fluent at ASL and easily shift form one to the other). On weekends, we mix it up. It works out that at home we’re doing a lot more speaking than sign, imply because my husband and I are at the toddler level in learning ASL and we often have more complex issues than the average toddler to deal with :) , so although Li-Li gets some quality direct learning in ASL, she also gets all that passive learning in spoken English. To balance this inequality and give her ASL language (not just vocabulary) , she attends school / childcare 4 days a week at a school for the deaf where she receives both ASL immersion programs and a spoken English/ASL environment with a mix of deaf and hearing teachers and students. But I’d never say I was an advocate for this approach — this is entirely customized to us and to our particular environment and abilities. I’m thrilled with any approach that works for a family, CI or not, and I think you’ve proven that AVT was the perfect choice for your children and your home! April 7, 2008 at 7:45 pm Melissa, I read the website (CID), and I certainly am not impressed. Here’s what I see… head and neck surgery, otolaryngology, audiology, tem cell therapies, cellular mechanisms, aural rehabilitation, speech, anatomy, hearing loss, tissue destruction, cochlear implants, clinical epidemiology, hearing aids… and many others. Many of those focus on the physical, medical aspect of hearing loss, or speech and hearing. Where’s the education part? I see ONE person that specializes in language acquisition. Gallaudet University focuses on the WHOLE deaf person, including sociology, linguistics, education, mental health, and many others. So I guess if you want your child to be able to speak and hear, go with CID’s research. If you want your child to be happy and a whole person, go with Gallaudet’s research. Li-Li’s Mom, I appreciate your explanation. As I’ve said before, committed and involved parents are the key. One question – Do you know yet what you plan to do for kindergarten and up, keep her at the school for the deaf or send her to a mainstream kindergarten? April 7, 2008 at 7:52 pm If you do a google search for Johanna Nicholas and Nancy Tye Murray, you will find a wealth of years of research related to language and hearing. The same goes for Ann Geers. In addition, Johanna Nicholas is now doing a follow-up study to the Geers one that I cited. The conclusion of the original study states They have brought back the same group of kids whom they studied years ago when they were in elementary school and are re-evaluating them. These kids are all now high school to college age. I’d be willing to bet a lot of money on the outcome of this latest study. April 7, 2008 at 8:07 pm I have thought about your statement, and I think it is the most ridiculous statement I’ve read thus far ….other than the Russian Roulette one. April 7, 2008 at 8:11 pm Melissa, we’re really agonizing over that one, but we’ve got a few years to go. We want to stay with TLC, the teachers are amazing and caring (and a few ivy leaguers and Gally hotshots – great deaf role models for the wee one’s self-esteem as well as being wonderful teachers, staff, and interpreters!). We’re definitely staying throughout PreK. But if we had to make the decision about kindergarten and up today, we’d likely have to find someplace else with an established program for CI kids: the handful of CI kids in the current gen. of kindergarteners-to-be are leaving for local CI-specific programs even though they have to give up the signing environment to do so (it’s heartbreaking — everyone loves it there, there just haven’t been enough CI kids until now). I don’t think that we’d do a mainstream environment for elementary chool: where we live, our public school isn’t the right place for her ituation, although we’re still researching options, neighborhoods, and even considering heading back down to Virginia where my husband taught at a private school that would provide a perfect environment. But fortunately we’ve got a large group of CI kids in the early childhood program right now, TLC seems committed to trying to expand its curriculum to make it work, and they have some really great SLPs involved in the early education program. So given that they’ve got a couple of years to build up the latest in educational approaches and resources (and we’re fundraising like mad), we’re remaining uncommitted and open-minded for the time being. April 7, 2008 at 9:18 pm Li-Li’s mom, I did my internship at TLC. I gotta tell you, that is one of the best deaf education programs I have ever seen in my 10 years in the field. I have worked in oral-only, TC, and BiBi programs and nothing I have seen beats TLC hands down! Maybe to you, that’s a silly comment but if u see the several children who were unable to pick up on spoken language and because delayed linguistically, u probably would feel the same as I do. Maybe not. Who knows? We will never know until you and the others learn ASL and immerse yourself in the Deaf community and have both experiences to draw upon. I have had both to compare and I can say that the BiBi approach is the most effective method to ensure that NO child falls through the cracks linguistically. April 7, 2008 at 9:26 pm Melissa re:#213 :) I only asked my hearing friends about Rachel’s speech after you made an issue of her speech in several postings. I do not really care how she ounds – I do not care much how *I* sound. However, I have observed many sets of Hearing parents who seem to expect that a CI will give their child speech that sounds indistinguishable from their Hearing peers *and* that their child will not even need the assistive technology that you say Rachel and Elizabeth use. I have to wonder – do all these sets of parents ignore the same parts of the informed consent information, or is there omething amiss with the standard information given these parents at a very vulnerable time in their lives? I know how informed consent is supposed to work, and I know that in many other settings informed consent is done very poorly and hastily, as just another thing to check off to keep the pencil-pushers happy. I really have to wonder about the information given to the parents of April 7, 2008 at 9:30 pm I would have to say that I cannot say that CID would provide unbiased research. I know that because CID was where I had my oral upbringing. ASL has never ever been allowed there and there were times of the “old chool” where the students were actually physically punished for using ign language, altho most of that happened before my days at CID. You’re absolutely right that they have that affiliation with Washington University as that is where CID’s teachers in training are educated at the graduate level. They have absolutely nothing to do with ASL whatsoever so how can that be unbiased research, regardless of how prestigious Washington University is. Now Gallaudet, as I understand it, has a CI facility on campus so they may be more unbiased than CID, as they cater to all forms of communication modes. Comparing Gallaudet with Washington University would be like comparing apples and oranges. Washington University is much more on the medical side so they may not have the expertise on the education side, they only know oral education and thats it. I am not going to sit here and say CID is a bad place, because I did ignificantly benefit from them. However and unfortunately, there are many others that did not. The blame does not lie within the school alone, but also the parents that were not involved extensively with their child’s oral upbringing. The successes that I am aware of, all had extensive parental involvement whereas those that were not as uccessful did not. What I am indeed happier to see, is the fact that smaller programs are being set up across the country, such as satellite schools implemented by CID for example, because that allows for more parental involvement, as opposed to placing the students in dormitories. As I mentioned earlier in a previous blog, I stopped using a hearing aid at a very young age and I am profoundly deaf in both ears. I know I learned to speak and read lips, primarily because of the extensive involvement of my parents, just like you were with your daughters. I would imagine that a significant portion of those that were not as uccessful is because that they did not have the parental involvement that we had. Now CID has a reunion every five years and beleive it or not, I would ay that less than 5% that attend these reunions do not know any sign language. The wide majority of the attendees there are signers and many of the can indeed be able to communicate with hearing people one way or another. I can tell you that the majority of these attendees wish they had known about the deaf culture at a younger age, regardless of whether or not they can freely communicate in the hearing culture. I count myself among these people. You say that Rachel is among the first people to use a CI in an AVT program and with her being in college, that also states that it is a good time, as its now been around long enough, to have some unbiased research conducted where we can really know the unbiased percentages of uccesses and non-successes, of not only AVT, but also ASL, bi-bi, cued peech, etc. (trying to avoid using the word failure here) April 7, 2008 at 9:41 pm I really am not going to come back to you with a disparaging comment like your Russian Roulette one. You need to remember that there are parents here who dearly love their children. Dearly. Unconditionally. We would do anything for our children. We have provided them with what we feel is best for them taking into consideration their individual needs. You can talk about your views, but please leave the derogatory comments at home. AVT works for many of our children. They are not deprived. They are not linguistically delayed upon graduation from the programs. They are functioning well with their implants in their worlds. Maybe you should work on your bi-bi program. Develop it, implement it, evaluate it, promote it, and reach out to those who need you. My son has been in a program for 4 years, and he’s heading off to mainstream Kindergarten in the fall. I’m not going to change his life based on anything you are saying here other than to shelter him from comments that belittle him and who he is. Trust me when I say, if AVT did not work for him (he began at 18 months upon diagnosis and is now 5) we would have sought other approaches for him. We would have been guided into such programs by our amazing AVT. He is amazing. He is child. He’s all boy. He’s smart. He tells the funniest stories. He loves life. He loves to listen. He loves to talk to others. He has integrated hearing into his life beautifully. His therapist asked him the other day. What would you do if you went outside and found money on the sidewalk? He said, “I would pick up the dollar, fold it up into a Star Wars ship, and then I’d give it to someone as a present.” He has given us the present of just being him. We have given him the present of language. Please remember we are speaking of children here. Not commodities. Not nameless pictures. I can only speak from experience, and what I see is not what you see. Thanks for sharing. While some suggest visiting a bi-bi approach, I’ll be honest there are none in these here parts. TC yes. Oral yes. AV yes. I appreciate your comments. Question: With your approach that you’ve designed, is ASL Li-Li’s primary language? Is English her secondary language? Do you speak when you sign or do you keep them separate? Does she have age appropriate language skills in each language? Just wondering..just being open minded:) April 7, 2008 at 10:08 pm Older and Wiser, My son does have a southern accent detected in his speech which I find facinating. Obviously he hears the accent. He uses our southern colloquialisms like “YesMaam” “yessir” “ya’ll” “wanna” “gunna” etc. perfectly :)…not the dreaded “ain’t” though. There were a few AV children I met this year who when they spoke were so southern it was like syrup flowing from their mouths. It was great. April 7, 2008 at 10:21 pm Melissa, I won’t deny that the people you cited are prominent and well-educated researchers in their fields. I’m not sure if you understood my point earlier. When I googled the names (in quotes), the only information I could find was on cochlear implant studies, the ear, hearing, otolaryngology, audiologic rehabilitation, and other stuff about hearing and speech. Ann Geers has her Ph.D in Psychology, but all the research she does involves hearing and/or speech as well. I found two related to linguistics (of course, English skills, and that is a whole other argument). I found two others that related to other topics. Speech, hearing, speech, hearing, speech, hearing, blah, blah, blah. We all know speech and hearing does not correlate to one’s IQ, level of happiness, or level of success (by success, I mean living independently, happily, and pursuing their goals, NOT speech and hearing ability). By the way, much of their research (from CID) that cites sign language fails to cite ASL. Are they really evaluating children who grew up using ASL, or are they evaluating those who grew up with cued speech, MCE, SEE, or, as I like to call it, “hearing people who THINK they’re igning, but all they’re doing is making a fool of themselves” (we all know the type, don’t we, Deafies???). April 7, 2008 at 10:26 pm mom2boys, you are very much like my own parents, who loved me unconditionally, did everything they could for me, and made what they thought were the best decisions for me. It is sad that after 28 years, they still think they know what’s best for me, despite me explaining otherwise. April 7, 2008 at 11:36 pm Hi mom2boys, ahhh, my husband would LOVE to hear a little southern flavor in Li-Li’s voice. But even after being activated for only a few months, she’s already got that Boston accent evident in her first words (more and star sound a whole lot like maw and stah — we’ve got to add a few syllables in there and crank up our Rs!). Li-Li’s primary language is ASL. She tends to interpret, though: For instance, when her SLP asks her “which is the bear?”, “where’s the dog?”, “who eats a carrot?”, etc., she generally signs the answer first, and then points to the appropriate picture or toy. Conversely, when her ASL teacher points to a picture of a snake, a sleeping baby, or a mouse, Li-Li often launches into the associated Ling check responses, verbally, and then provides the sign a moment later. We’ve got her post-CI eval. at Children’s Hospital, Boston tomorrow, so we’ll soon see if she’s on track for a 2YO (EI evals show a tremendous leap in the past 6 months, even though she came here from a Chinese orphanage in February ’07 after a year of being isolated from any verbal or manual communication. They weren’t aware she was deaf: her behavioral reports said she was “stubborn” and doesn’t listen to caretakers (which is true, though, she is, and she doesn’t :) !). April 7, 2008 at 11:43 pm Shel, so good to hear wonderful things about TLC from professionals like you — we parents who are there adore the place. My husband and I thank our lucky stars that they opened a staff-only child care program to us (with deaf, HOH, CODAs and hearing kids all mixed together) in addition to the usual early childhood services and programs they offer. Our TLC SLP voluntarily comes with us to all of Li-Li’s mappings and evals and corresponds regularly with our CI team to make certain that the school is synching up her therapy appropriately. Just need to add in a great CI-focused approach to the kindergarten and upper level curriculum and maintain the great cohort of 5-6 CI kids currently in the early childhood program, and we’ll be very happy! Mishkazena April 10, 2008 at 2:26 pm There are so many things here I want to comment, but won’t with one exception. For the people who nitpicked the quality of Rachel’s speech, please note that she got her c.i. at the age of 2 years and 8 months, which is considered late nowadays. The age of implantation does make a ignificant difference. Please listen to the speech of her younger ister Jessica who got implanted at the age of 15 months. In the successful cases of aural/oral competency with kids implanted less than two years old, even more with one year old or younger, usually their speech cannot be distinguished by their hearing peers. With the not functional cases, it is a different ball-game. AVmother April 14, 2008 at 8:51 am FYI, Dr. A. G. Bell used a self-created fingerspelling with his mother. He also signed with various people, including (of course) Helen Keller. Dr. Bell was NOT at the conference at Milan. Yes, he was a proponent of teaching speech to the deaf so that they could be in the mainstream. But he was not a representative at the conference. Dr. Bell was involved in a large body of teachers of the deaf, years ago. He fought tooth and nail to continue to allow ALL methodologies to be present in the organization. He refused to “wine and dine” legislators as was suggested in order to win approval of his methods. He believed that his ideas should stand on their own merit. He believed this very strongly. He also believed in day schools and mainstreaming. He was not a proponent of boarding schools since this removed kids from their families and communities. His wife and mother (both also deaf) had shown him the benefit of this concept. Dr. Bell created an organization which now is there to support parents who make the choice to utilize either oral or AV methods. However, any parent of a deaf infant in this country is presented all options in by the people involved in the birth to three programs in each state in the nation. AND, I might say, they are often biased toward sign language programs. Thankfully there IS a private organization which will provide upport upon request. As to the idea that speech is not able to be learned until about 18 months: hogwash. Babies begin listening before birth, and deaf infants can learn to listen very shortly after birth. They can babble as infants and, if implanted early, can develop the normal phonemes AT THE SAME TIME as their hearing peers (and I’ve had a toddler with hundreds of expressive words between 18 and 24 months, so I have firsthand experience). When audition is emphasized early on, they can have their 5 senses sharing the brain as any child’s would, rather than having visual functions become stronger as time passes, failing to relinquish these areas to the auditory sense. Deaf babies are not born with tronger visual senses– this is a myth. Development of the visual enses for language use, will preclude typical development of auditory language, and consequently, speech production. Thanks, open-minded deaf person, for being happy for kids today who can benefit from a CI. What a breath of fresh air to read about someone who is forward thinking and can be pleased for the future generations, despite their own history. Kids today can easily converse with their peers, and it’s sad when others aren’t thrilled with that prospect. It’s not easy to acknowledge that the path today is different than it was 25 years ago, and it takes a lot of wisdom to separate one’s own experiences from the facts. An Activist February 14, 2011 at 12:09 am Rachel Melissa and all the other AVTers, Has it occured to you that AVT causes a dhh kid to be DEPENDENT on their hearing aid/CI? Yes, they can hear and speak (and with fluency all along the spectrum) BUT, they are HELPLESS without the technology. They cannot function without the technology…which is EXPENSIVE. I know of a teen boy whose bilateral CIs both broke. He is literally LOST without his CIs. He can’t even speechread! Whereas a kid who attends a bilingal bicultural program, aquires fluency in BOTH spoken English and ASL!!!! I know hoh kids who are fluent in ASL and speech and can code switch easily. Also one thing that I have NEVER seen addressed. AVT is essentially aying that you want your kid to have to endure an eternal speech thereapy session. Why the heck would you want your kid to be in an eternal speech therapy session? How would you like it if kids made fun of your voice or if people wouldn’t hire you b/c they thought you were retarded b/c of your deaf voice? How would you like it if you were only comfortable talking one on one? You guys neglect stuff like a dhh kid’s mastery of written language, and social emotional issues (you have NO idea how many times I’ve been IMd by dhh oral boys wanting a girlfriend!) or just life acheivement in general. JessicaB November 17, 2011 at 2:37 pm Activist’s comment is an offended! I disagree about CI/hearing aids are dependent. The deaf people don’t have CI or not wear hearing aids are dependent, they are very depend on ASL interpreters. The CI users doesn’t need to have an ASL interpreter because they can hear, speaking kill with device. It mean they are independence without need ASL interpreter. Open minded’s view like mine but I never attend to Gallaudet University. I had experience in both deaf/hearing world. I’m support the parents choice for deaf babies to have CI not DBC’s own of all deaf babies/children. I’m giggling at Shel’s comment about her raised oral without ASL, gave it up on oral skill, Remember she don’t have a CI user like Rachel. I believe that CI user between non ci user are different experience. I admire Rachel’s success with CI and AVT. I enjoying read her blog. I joined to CI online on Facebook page fan to support CI. I love my CI! I can’t live without it! 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Password __________ Log in Advertisement Register Blogs FAQ Social Groups Calendar Search Today's Posts Mark Forums Read Closed Thread Page 1 of 3 1 2 3 > Thread Tools Display Modes Old 10-08-2015, 07:01 PM #1 Condor1970 Registered User Join Date: Oct 2014 Posts: 104 Likes: 0 Liked 58 Times in 29 Posts She's in BIG trouble!!! __________________________________________________________________ Well, after having an implant for about 5 months now, my daughter has milked this enough. The Audie said she has only been wearing it for about an hour a day, which is not enough to get it to work properly. I kept wondering why she hasn't been improving like she should be expected to. Well, she's been taking it off in school, because she doesn't want to feel different, and when she gets home, she wears it, but has it turned off to make it look like she has had it on, but didn't. Then, she takes it off for the rest of the night saying that he is tired, and having it on all day in school is fatiguing, which of course now I know she hasn't even been wearing it. Well, I warned her. Unfortunately, now she has lost all internet privileges for the next 6 weeks until the next office visit. No cell phone, no computer for internet to play games on. If she doesn't have enough hours of use logged when we go back, the phone stays confiscated. I hate doing these things, but I am forced to. She basically, lied to all of use for months. So, there will be consequences to her actions. If she has to learn the hard way, so be it. Besides, she's addicted to texting on that stupid cell phone, and playing internet games anyway. Teenagers! Funny thing is, now that she has been forced to wear it in school, a couple kids have asked what it is, and how it works. Their only response, "Oh, that is so cool". She's kind of a shy girl, but now he's getting more friendly attention than ever, when she thought she would be picked on. What she doesn't realize, is that modern day kids love all that hi-tech gizmo stuff. It's not quite like the old days. LOL Likes: (1) caz Condor1970 is offline View Public Profile Find More Posts by Condor1970 Old 10-08-2015, 07:08 PM #2 Bottesini Old Deaf Ranter Bottesini's Avatar Join Date: Mar 2008 Location: HFA Posts: 43,008 Blog Entries: 2 Likes: 1,696 Liked 1,718 Times in 935 Posts It seems like it must be more than just wanting to fit in, if she turns it off and takes it off at home as well. A fifteen year old should have some say over what happens to their own body. __________________ Bottesini is offline Find More Posts by Bottesini View Blog Old 10-08-2015, 07:11 PM #3 hoichi hoichi's Avatar Join Date: Dec 2013 Location: Dancing my way to oblivion Posts: 5,187 Likes: 207 Liked 653 Times in 512 Posts Quote: Originally Posted by Condor1970 View Post Tyrant!! ..."sign will set you free". a genie signed to me. as a mirror now reflect it. to other hands into other eyes, signs our greatest treasure, its light wants to be shared ..im ...that shadow with a cigarette, A Deaf guy who knows whats at take..... hoichi is offline Find More Posts by hoichi Old 10-08-2015, 07:31 PM #4 Jezie Jezie's Avatar Join Date: Mar 2014 Location: Georgia Posts: 1,613 Likes: 168 Liked 312 Times in 236 Posts You are forced to... Really? Why can she not have any say in her body... The only one forced to do anything is her.... Sad ... Jezie is offline Find More Posts by Jezie Old 10-08-2015, 07:44 PM #5 whatdidyousay! whatdidyousay!'s Avatar Join Date: May 2009 Location: Earth Posts: 25,950 Likes: 2,669 Liked 1,484 Times in 1,150 Posts Why are you forcing your child to feel difference , it's hard enough being teenager today and not allowing her to talk to her friends is down right cruel ! I think this is the most horrible thing you can do your teenage daughter force her to feel difference . Have you even tried putting yourself in your daughter's place for even one minute ?? This is one of most upsetting thread I see here . I really horrible for your child , you're too blind to see what you're doing to her ! Mark England December 6, 1983 ~ February 15, 2015 RIP Mark , You'll not be forgotten . whatdidyousay! is offline Find More Posts by whatdidyousay! Old 10-08-2015, 08:00 PM #6 hel90 Audist are not welcome hel90's Avatar Join Date: Sep 2006 Location: A place where crabs are popular Posts: 44,563 Blog Entries: 3 Likes: 379 Liked 731 Times in 410 Posts I can totally understand! I was forced into being mainstreamed with all hearing peers and forced to wear a FM system. I purposely found ways to not wear it by not charging it, breaking the mic and etc...finally the chool gave up after months of fighting with me to wear it. Who wants to feel different when they aren't ready to accept it. Don't punish her pls. She is having an identity crisis and is in a very vulnerable state of mind. Believe me I was there 30 years ago and it was HELL!!! "Wine improves with age. The older I get, the better I like it." --- Anonymous hel90 is offline Find More Posts by shel90 Old 10-08-2015, 08:12 PM #7 Does your daughter sign? Or is she learning sign? Old 10-08-2015, 08:25 PM #8 drphil Join Date: Jul 2010 Location: Toronto Ontario Posts: 4,793 Likes: 121 Liked 28 Times in 25 Posts Is there something else involved? When she disconnects her Cochlear Implant presumably she hears nothing How exactly does that square with "fitting in" with her hearing friends? Does she use ASL? Do all her friends know and use ASL as well? Was she not advised in order for her brain to "process sound from her Implant" she must have it on all the time for her brain to get used to new sound? Was she "excited" about getting a Cochlear implant thus hoping if uitable-of hearing much more speech- then she heard in the past? Even odder-most females can "cover their Implants" while most males can't-it is very obvious. Whether 15 is "adulthood" is your area thus has/had some "say" on the operation- I can't say. I suspect there is a lot more to this situation which can't exactly "spelled out" in this forum. On the face of it perhaps extended discussion with the "appropriate health person" psychologist etc-may give insight on the immediate situation. Much luck in a resolution in the near future which brings some peace. Get Real:Implanted Sunnybrook/Toronto -Advanced Bionics-Harmony activated Aug/07 geoff drphil is offline Find More Posts by drphil Old 10-08-2015, 08:27 PM #9 Originally Posted by drphil View Post What was described in the OP, it was eerily similar to what I went through in middle school with the FM. Old 10-08-2015, 09:13 PM #10 First off, she desperately wants to hear, but she is not motivated to do what is necessary to make that happen. She is an incredible student in school, and wants to be a doctor when she grows up. She has the grades to do it too. I even talked about this with both doctors, and they agree. She wore it last year in middle school, but now she's in High School, and she had this weird idea in her head that people actually care about it, like she's a freak or something, which of course she isn't, and absolutely no one gives her a hard time about it. If anything, all the kids think it's pretty cool. And no, I didn't push her for months. I gave her so much leeway, she has wasted everything to this point. Now is the time to step in and correct the problem. It's called parenting. And yes, she is learning ASL, but only because she likes it as a back up, not because she wants to use it as her primary means of communicating. At 15yo, I do have the authority to make decisions about her life. That's called parenting. It boggles my mind when people think a child is actually truly capable of making these kinds of decisions. Should they have a part? Of course, but the ultimate decision is mine. When he is a legal adult living on her own, then she has every right to live her life as she chooses. If people on here don't like it, that's too dang bad!!! Grow up. You can take your liberal Dr. Spock garbage and toss it in the trash. I love my children, and care for them a lot more than anyone on here, so don't patronize me with all this garbage about her making these kinds of decisions, because she is still a child, whether you think so or not. Have your own children and find out what happens when you, the doctors, nurses, school district, and everyone associated spent months fighting to get this for her when she begged for it, and you have over $100,000 pent on insurance to make it happen. Especially when she begged and pleaded for it, because she wants to go to the same school. She was fully aware of the commitment involved when this process tarted. There is no going back. When you make a commitment to something, you stick to it, even if you have to tough it out a bit. One does not truly excel in life by simply walking away from a problem every time you don't "feel" good for a little while. This is what's wrong with our society today. No conviction, No discipline, and a complete breakdown of real parenting. I fully understand her feelings, because I was a bullied skinny little kid in school. But, I didn't become a nuclear engineer by complaining about other kids picking on me, or having stay up every night to study, because I was tired, or didn't feel good. I did it anyway, because I needed to, in order to succeed. If I made every decision in my life based on simply how I felt when I pouted, I'd be living in a dumpster on welfare. I'm not here to be her best friend. I'm here to be her parent. btw, she didn't like the FM system either, because it bothered her. She did well in school anyway without it. Now she is almost completely deaf, and she begged to get this CI so she can stay in school without any other means needed to accommodate her. Well, if that's what she wants (and it still is, btw), she needs to have the discipline to get it. As her father, I will make sure she gets what she wants. It's all about the end game, not about how you feel at the moment. Is she ticked off at me? Well, yeah. I would be too when I was 15. So what? After a good long talk, she understands she brought on her banishment from the internet by her own laziness, not mine. BTW, she is ADDICTED to the internet, and she is already understanding she needs to do this. She has been horribly unfocused for months, but just a good prodding is finally getting her head back on straight. In fact when I told her I fully understand, because she is pig headed and stubborn.... like me... she laughed, because she knows she is her fathers daughter. Likes: (5) Annie09Z, BleedingPurist, geoff, rockin'robin, zajko Old 10-08-2015, 09:26 PM #11 rockin'robin rockin'robin's Avatar Join Date: Apr 2007 Location: Jacksonville, Florida Posts: 23,437 Likes: 2,035 Liked 1,408 Times in 836 Posts Is she ticked of at me. Well, yeah. So what? After a good long talk, he understands she brought on her banishment from the internet by her own laziness, not mine. BTW, she is ADDICTED to the internet, and she is already understanding she needs to do this. She has been horribly unfocused for months, but just a good prodding is finally getting her head back on straight. In fact when I told her I fully understand, because she is pig headed and stubborn.... like me... she laughed, because she knows she is her fathers daughter. I agree with you! rockin'robin is offline Find More Posts by rockin'robin Old 10-08-2015, 09:37 PM #12 I did parent my kids with that liberal Dr Spock garbage, and they are incredibly successful, plus they don't hate me.... Old 10-08-2015, 09:39 PM #13 BleedingPurist Join Date: Jan 2012 Posts: 552 Likes: 79 Liked 52 Times in 31 Posts This is definitely one of those things that she will thank you for down the line. Well done! Likes: (3) Annie09Z, caz, rockin'robin BleedingPurist is offline Find More Posts by BleedingPurist Old 10-08-2015, 09:43 PM #14 Bottesini, No, I do not hate you. I'm not saying treat your kids badly, because that IS abuse. There is a big difference between discipline, and abuse. Discipline is invoked to provide focus, and proper behavior. But everyone's personality is different. Unconditional love, with no sense of consequences doesn't work in my family. Never has, never will. In fact, with most people it doesn't either. It can be a delicate balance when parenting. You have to know when to give them room, and when to put your foot down. I didn't make it through boot camp with my Company Commander giving me unconditional love. LOL Annie09Z, BleedingPurist, rockin'robin Old 10-09-2015, 10:25 AM #15 dogmom Join Date: Feb 2009 Posts: 7,731 Likes: 381 Liked 403 Times in 263 Posts one little thing I will say here - in your most recent reply last night around 8ish, where in which you wrote among others that you "....understand her feelings...." the question I have is - do you? are you deaf? dogmom is offline Find More Posts by dogmom Old 10-09-2015, 10:42 AM #16 Jane B. Join Date: Mar 2011 Posts: 3,369 Likes: 272 Liked 164 Times in 123 Posts Originally Posted by dogmom View Post I went back and re-read his post. I take him to be saying that he understands from having a fear of being picked on for something. Not that the something is the same thing nor does it need to be to feel that way. Jane B. is online now Find More Posts by Jane B. Old 10-09-2015, 10:50 AM #17 caz's Avatar Join Date: Oct 2006 Posts: 3,046 Likes: 510 Liked 520 Times in 412 Posts I found Dr Spoke great for my blood pressure I shoved it at bottom of my mattress raise me feet I made sure I no treat my son the way I was as a kid abit common sense , he did ok smashing man great parent good doctor. I honestly never punish him good disaplin know right from wrong.i accepted from age of 14 to 18 I proberly not understand him apart from got fiver mum which he could sign so well and I could lip read the answer was still no HELLO! caz is online now Find More Posts by caz Old 10-09-2015, 11:02 AM #18 Reba Retired Terp Reba's Avatar Join Date: Jun 2004 Location: South Carolina Posts: 51,267 Likes: 2,108 Liked 2,972 Times in 1,727 Posts . . . Please remember, the relationship between your CC and you, and your daughter and you, are not the same thing. Your CC didn't love you, and you didn't love him, conditional or unconditional. You should love your child, the only condition being the father-daughter relationship. That doesn't mean her behaviors won't have consequences. It means that despite the behavior and consequences the love will still be there. Withholding love should never be one of those consequences. I'm a retired Vietnam-era Navy veteran (as is my husband), so I know about CC's and boot camp. I'm also a mother and grandmother, so I know about parent-child relationships, too. Believe me, they are not the ame, nor they should be. I'm a baby boomer, so I know about Dr. Spock but neither my parents nor I used him for our parental guidelines. Reba is offline Find More Posts by Reba Old 10-09-2015, 11:09 AM #19 I'm glad you wrote that Reba Old 10-09-2015, 11:13 AM #20 Can she talk to other kids in same position Old 10-09-2015, 11:57 AM #21 do what is necessary to make that happen. . . She wore it last year in middle school, but now she's in High School, and she had this weird idea in her head that people actually care about it, like she's a freak or something, which of course she isn't, and absolutely no one gives her a hard time about it. If anything, all the kids think it's pretty cool. Her motivation to hear may be strong but at this age the motivation to be one of the crowd may be even stronger. Sometimes what was acceptable during middle school years is all of a sudden totally unacceptable in high school. For some people, being noticed as "different" can be painful, even if it's a positive difference. A teen doesn't necessarily want to stand out, even for the best of reasons. The good news is, this is usually temporary, after some maturity takes place and "fitting in" gets put into perspective. At that time, her priorities should change. they have a part? Of course, but the ultimate decision is mine. Of course you have the right to make the final decisions but the child's feelings should be taken into consideration, whenever possible. When she is a legal adult living on her own, then she has every right to live her life as she chooses. If people on here don't like it, that's too dang bad!!! Grow up. You can take your liberal Dr. Spock garbage and toss it in the trash. I love my children, and care for them a lot more than anyone on here, so don't patronize me with all this garbage about her making these kinds of decisions, because she is still a child, whether you think so or not. You and I are life-long hearing people. No matter how much we might empathize with deaf and hoh people, we can't really feel what they feel. That's especially the case with those who were marginalized from infancy on just because their hearing and speech was "different." They pent their formative years standing out (and not in a good way). They have life experiences that influence their perspective and insight that they're trying to share with you. It has nothing to do with liberality or Dr. Spock. Their childhoods may not mirror your daughter's but you hould still give respectful attention to what they offer. That's probably how my dad felt when he punished me for not wearing the hideous orthodontic neck device in public. I strongly wanted braces and traight teeth but I just as strongly didn't want to wear the awful and highly visible neck strap in public. So, I wore it at home only. That wasn't good enough for my dad, who thought I was blowing the whole treatment process. I had just turned 16, was in a new high school in a new state, and definitely not a popular kid (very introvert). So this was all I needed to look even dorkier. I could take punishment better than having my peers look at me weirdly. So, for the rest of the school year (several months) I couldn't watch TV at all (this was 1967), and when the family went on their weekly pizza outing I had to stay home alone. I know that it pained my dad to do this but he didn't know what else to do. (He was an electrical engineer working in aeronautics, private and government, and NASA--to him, my behavior wasn't logical.) Obviously, I'm not comparing to a few years of inconvenience to a life long "difference" but only showing some similar family dynamics. I don't think she wants to go back. I think she's going thru a life phase where her social position is taking a higher than usual priority. Sadly, at this age, it's common to think the world revolves around self and how everyone else is viewing self. I don't think she's walking away from her commitment; more like a detour but she can eventually get back on track. She isn't you, and you aren't her. Have you told her about your childhood obstacles and how you overcame them? Did you tell it in a way that was positive and not in a way that made her feel lesser for not being you? Of course. But you are a parent, not a Company Commander. did well in school anyway without it. What's that tell you? Despite these bumps in the road, she CAN succeed, and she's proven it. Try to see the positive. Now she is almost completely deaf, and she begged to get this CI so she can stay in school without any other means needed to accommodate her. Well, if that's what she wants (and it still is, btw), she needs to have the discipline to get it. As her father, I will make sure she gets what she wants. It's all about the end game, not about how you feel at the moment. Yes but it takes time. She's intelligent so she'll realize sooner or later what she needs to do, and adjust her behavior accordingly. Keep up the good long talks. I'm afraid digital addiction is seriously a problem for a whole generation. Likes: (6) BecLak, Bottesini, dogmom, geoff, shel90, whatdidyousay! Old 10-09-2015, 12:11 PM #22 Originally Posted by Reba View Post Reba , this is my favorite post you ever made . Old 10-09-2015, 12:19 PM #23 I wish we had a 'greatpost' too ! Likes: (2) BecLak, dogmom Old 10-09-2015, 12:34 PM #24 not enough "likes" for that one, Reba !! Old 10-09-2015, 12:39 PM #25 Boot camp? Really... Is that what paranting is to you? Damn Old 10-09-2015, 12:41 PM #26 Jane, you're not getting it, If you like, see Reba's post- Old 10-09-2015, 12:58 PM #27 What I thought my post addressed was that he could understand from being picked on about something it has nothing to do with if that omething was being deaf or not! Just that there was something for both of them. I could not see that Reba's post was really different on that point than mine. Old 10-09-2015, 01:25 PM #28 Originally Posted by BleedingPurist View Post And you can stop with your generalization ! I am a baby boomer and my mom didn't have one 'how to bring baby book' in the house and either did I with my baby ! The only Spock I grew up with was Mr. Spock. Old 10-09-2015, 01:26 PM #29 Frisky Feline Join Date: Jun 2003 Posts: 26,134 Likes: 462 Liked 588 Times in 362 Posts being a parent is a lot of FUN. eh.. Frisky Feline is offline Find More Posts by Frisky Feline Old 10-09-2015, 01:41 PM #30 ometimes things get over analized Annie09Z, Secretblend « Previous Thread | Next Thread » Thread Tools Show Printable Version Show Printable Version Email this Page Email this Page Display Modes Linear Mode Linear Mode Hybrid Mode Switch to Hybrid Mode Threaded Mode Switch to Threaded Mode Posting Rules You may not post new threads You may not post replies You may not post attachments You may not edit your posts BB code is On Smilies are On [IMG] code is On HTML code is Off Forum Rules Forum Jump [ Hearing Aids & Cochlear Implants___] Go All times are GMT -5. The time now is 01:17 PM. 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Password __________ Log in Advertisement Register Blogs FAQ Social Groups Calendar Search Today's Posts Mark Forums Read Closed Thread Page 2 of 3 < 1 2 3 > Thread Tools Display Modes Old 10-09-2015, 02:09 PM #31 hoichi Registered User hoichi's Avatar Join Date: Dec 2013 Location: Dancing my way to oblivion Posts: 5,187 Likes: 207 Liked 653 Times in 512 Posts Quote: Originally Posted by BleedingPurist View Post This is definitely one of those things that she will thank you for down the line. Well done! Can you also see the future for the lotto? __________________ ..."sign will set you free". a genie signed to me. as a mirror now reflect it. to other hands into other eyes, signs our greatest treasure, its light wants to be shared ..im ...that shadow with a cigarette, A Deaf guy who knows whats at take..... hoichi is offline View Public Profile Find More Posts by hoichi Old 10-09-2015, 05:35 PM #32 Condor1970 Join Date: Oct 2014 Posts: 104 Likes: 0 Liked 58 Times in 29 Posts No hoichi, no one can see the future. But I do know that my daughter actually gave me a hug today, and said she understands now, and is orry for wasting her whole summer playing on the computer, when she was supposed to be playing/talking with her friends and working on rehabilitation with her CI. Now, she's even regretting that basically missed one of the best summers we've had in a decade, locked up in her room with the shades drawn playing on that stupid teenager website. What a waste of life. No, I am not a CC. I never said I was. Nor would I want to bring up my children in that kind of environment. I was simply making a point that ometimes achieving goals is very hard, and you have to deal with the unfortunate obstacles along the way. My point is that more often than not, humans are generally very lazy. This is a fact. If for one minute we feel as if we don't have to work for something, we won't. One does not succeed in life by being lazy. They succeed by working hard, and ometimes having to put up with a lot of difficulties. In fact, even when those who are coddled and manage to succeed, it is only when we face adversity, that we truly excel. For anyone on here to think I don't love my daughter, then you don't know what love is. Loving someone is not just touchy-feely affectionate nonsense. Of course I have great affection for my daughter. Why wouldn't I? But, it's not just about how you feel. Loving is what you do. Sometimes, that love can be a bit tough, but in the end, it is worth it. She's actually one tough kid (mentally). And yes, I do understand her feelings. I know what it's like to be different. So don't tell me I don't understand my daughter when not one person on here even knows who he is. Likes: (2) BleedingPurist, geoff Condor1970 is offline Find More Posts by Condor1970 Old 10-09-2015, 05:41 PM #33 Originally Posted by Condor1970 View Post No, I am not a CC. I never said I was. My point is that more often than ometimes having to put up with a lot of obstacles. In fact, even when those who are coddled manage to succeed, it is only when we face adversity, that we truly excel. know what love is. Loving someone is not just touchy-feely nonsense about how you feel. Loving is what you do. Sometimes, that love can be a bit tough, but in the end, it is worth it. So, you maneged through threats and coercion to get your daughter to dance to the tune you dictated.regardless of what ever she was feeling or even thinking or her own wishes... And she has given you a hug. And has submitted. Fair enough. Hope this.behavoir youve instilled in her, works for her when she faces other threats and other coercions.. Judging by the hug.. Its looking grim. Good job (Pats you on the back) Likes: (3) Bottesini, dogmom, Jezie Old 10-09-2015, 05:48 PM #34 Bottesini Old Deaf Ranter Bottesini's Avatar Join Date: Mar 2008 Location: HFA Posts: 43,008 Blog Entries: 2 Likes: 1,696 Liked 1,718 Times in 935 Posts During the Korean War, my dad was an unarmed combat instructor , and a military policeman escorting dangerous people on trains. I had a similar upbringing to your daughter, although mine also incorporated extreme physical abuse. Not just the mental. That made me decide how I would raise children if my own. In addition to making sure that the people who raised me had minimal contact. I definitely learned how to be sweet and agree to try to avoid the abuse. Of course as an adult I don't take much guff from anybody Likes: (1) dogmom Bottesini is offline Find More Posts by Bottesini View Blog Old 10-09-2015, 05:57 PM #35 caz caz's Avatar Join Date: Oct 2006 Posts: 3,046 Likes: 510 Liked 520 Times in 412 Posts Bot I had the English version of your upbringing my biological dad was American but I was brought up by father British army Korea mental physical abuse I left home soon hit 16 and lived on own wits. although not deaf then I had other problems like total fear of parents.. I made same promis my kids would never have upbringing I had...To this day I won't have brass in my house Saturday morning I had polish all brass in house and God help me if pin prick of dirt it was thrashing not slap HELLO! caz is online now Find More Posts by caz Old 10-09-2015, 06:07 PM #36 Originally Posted by caz View Post I'm truly sorry if you're life was miserable as a child. My kids however, basically get whatever they want. Seriously, if anything, I do dode them a bit much sometimes, by rewarding them for hard work. As a result of their hard work in school, and help around the house, my girls have just about every hi tech gadget, and fashionable clothes their little hearts desire. All because they work hard and earned it. A good example is when my daughter begged for 2 years to learn how to play piano. So, I made a deal with her. I would buy her a piano, but only if she took lessons. If she quits lessons, then I sell the piano. My point, was that if she wants me to spend thousands of dollars on a piano and lessons, she will learn how to play it properly and be committed to learning how to play such a beautiful instrument. She's been playing for 5 years, and still going. She loves it. Sometimes, she does get a bit bored with it, but still plugs away, because she progresses slowly as time goes on. She also does not want to lose her piano. ie. consequences to your actions and inherent laziness. Same goes for spending $100,000 of insurance for a CI. Funny thing. She even admitted to me this morning she really isn't to worried about other kids bothering her, because she has long hair, and you can't even see her wear the silly thing. She's staring to understand very quickly that no one cares if she has a CI, and it ain't no big deal. I think the real main reason, is that partly she doesn't want to feel different, and also got just plain lazy. Old 10-09-2015, 06:11 PM #37 You sure have a gift, for missing the point.. I grant you that.. Old 10-09-2015, 06:55 PM #38 Join Date: Feb 2009 Posts: 7,731 Likes: 381 Liked 403 Times in 263 Posts Condor, My mother was raised by a very physically abusive and emotionally abusive and manipulative mother. I think that "touchy-feely" as long as it genuine, is important- not at all "nonsense" and loving has as much do with how you express things/feelings, etc, as to do with "what one does". They do NOT have to be exclusive. True loving is not purely about coercion or manipulation or about performance. and you missed my/others' points as well as Hoichi's- dogmom is offline Find More Posts by dogmom Old 10-09-2015, 07:56 PM #39 BleedingPurist Join Date: Jan 2012 Posts: 552 Likes: 79 Liked 52 Times in 31 Posts Originally Posted by dogmom View Post Your points amount to projecting your own issues on a young lady you do not know and engaging in undue criticism of parenting that has been excellent when you stand back and look at it objectively. There is way too much "boo hoo, I suffered in my childhood and in school because I'm deaf" on this forum leading pushing a social life over preparing for life. She wants to hear. Wanting to hear with a CI is like wanting to get in hape. It's not gonna happen sitting at home doing nothing. So any projection of "I want to be deaf, so I'm sure she wants to be left alone to be deaf" is off the mark. She also needs to strengthen her sense of how she carries herself being what determines how people perceive her, not the other way around. Likes: (4) ambrosia, Annie09Z, geoff, rockin'robin BleedingPurist is offline Find More Posts by BleedingPurist Old 10-09-2015, 07:59 PM #40 LoveBlue LoveBlue's Avatar Join Date: May 2010 Posts: 6,303 Likes: 1,198 Liked 1,173 Times in 672 Posts Originally Posted by whatdidyousay! View Post And you can stop with your generalization ! I am a baby boomer and my mom didn't have one 'how to bring baby book' in the house and either did I with my baby ! The only Spock I grew up with was Mr. Spock. :dunno; Severe-to-profound hearing loss in both ears. SD @ 110db L-62% / 100db R-84% - unaided Phonak Naida IX UPs LoveBlue is online now Find More Posts by LoveBlue Old 10-09-2015, 08:11 PM #41 So exactly how have I coerced her? She was the one that wanted a CI more than anyone. Exactly how have I abused her? Taking away internet privileges for lying? That's abuse? You must be children, or adults who never grew up. No real parent would question that kind of discipline for their kids lying to them. Giving your children affection is vital. I am not arguing that. But, giving them affection after they have lied to everyone, and abused the freedom they were given, is not going to teach them anything. She wanted to learn piano. And she made the decision on her own to learn and practice. You think it's appropriate to spend thousands of dollars on something, and then let it sit and go to waste? Or, would it eem logical to make a basic ground rule that when you invest in omething important, you see it through? That if you want something, you have to work at it to earn it? She begged for a CI. You think it's appropriate to spend $100,000, only to have her not use it, and just leave it lying around like a cheap cell phone gadget? Only then to find out that after all the affection and leeway she was given for months to see that she has been lying to you on purpose, because she just plain got lazy? I even told her ahead of time, that it would not be easy, and that wearing it might make her feel a bit out of place, but no one will really care. She still begged for it, and wanted it. She was shown urgeries on YouTube of actual implants, and she still wanted for it. She even said she may want to be an ENT someday so she could do the ame. You people on here have absolutely no idea what you're talking about. I swear if you people were the parent of my daughter, she either be a knocked up teen, or a drug addict, based on your lack of guidance, and tupidity. So tell me, oh wise morons, if you just spent the last year petitioning a multi-billion dollar insurance company, on behalf of the daughter I upposedly hate and abuse, and finally actually got a legally notarized insurance policy changed for the sake of getting her what she wants, along with support and help from the school district and doctors, only to have it wasted, what would you do? Especially after your child wasted months of her life playing on a tupid computer, accomplishing nothing with her life, all because I gave the exact love, affection, and leeway you all spout your mouths off is so important, only then to find out she stabbed everyone in the back with her lies, because she got lazy? What would all you brilliant ignoramus's do? Please tell me. I am so waiting to read your responses as to how to raise a child you know nothing about, especially when all your o-called "unconditional love" ideals have already failed. And as far as missing your points goes. They have nothing to do with my daughter. Your points apply to you, since you were abused, mentally or physically. My daughter lives one heck of free life to do as she pleases, only to understand there are "some" rules and expectations. Heaven forbid, she actually has to work to accomplish something. She wasn't abused in any way like you were, so don't tell me she is being brought up like you were. You're just lying to yourself and everyone else on here hoping for some sympathy. You have my sympathy to a degree, but you trying to tell me that I abuse my daughter because I banned her from the internet, is an absolute joke!!! Granted, I started this thread, but if you really are that deluded into thinking my daughter is being abused, then you need to simply shut your trap, and mind your own business. What I find hilarious, is that I have discussed this at length with the people here at the hospital I work at, including the chaplain, the doctors, nurses, and even the local therapist who helps abused women from domestic violence. EVERYONE is cheering my decisions to finally put my foot down, and correct this situation. I bet hoichi thinks not letting my children watch violent movies and pornography is abusive too. I guess my kids would be able to do whatever they want, with no consequences at all. How foolish. There is a couple other people on this forum who warned me about the idiots on here. They were right. Likes: (5) Annie09Z, BleedingPurist, geoff, rockin'robin, zajko Old 10-09-2015, 08:41 PM #42 So I guess you find it a little hard to take if people don't give you unconditional approval? Old 10-09-2015, 09:01 PM #43 rockin'robin rockin'robin's Avatar Join Date: Apr 2007 Location: Jacksonville, Florida Posts: 23,437 Likes: 2,035 Liked 1,408 Times in 836 Posts It doesn't seem that the OP is coercing his daughter at all...she wanted the CI...was showed movies of the surgery...and wanted to "hear"... ...at 15, that's what she wanted...and 100K isn't peanuts either!...People are saying she should have a choice of her own body...and she did. Her father told and showed her the pros and cons...she still wanted the CI. I've heard of many deafies wanting the CI...and the Insurance companies paying an enormous amount of $$ for it...then for them to just throw it down.... At 15, she does have a sense of what she wants and doesn't want. One of my sons wanted to play football....so I went ahead and paid all the fees, uniforms, etc. Then he started to complain it was "too hot"...but...he knew this to begin with...and I made him stick it out. He's glad he did! Same as for the piano...my nephew wanted to learn how to play, so my ister bought him a nice piano...after a few sessions, he lost interest....but...my sister told him..."you don't give up"...and today, he is an accomplished pianist and plays drums also, has his own Band. Annie09Z, BleedingPurist, geoff rockin'robin is offline Find More Posts by rockin'robin Old 10-09-2015, 09:06 PM #44 I don't think the criticism of the OP has much to do with the CI at all. There are different means to an end, and you can accomplish just as much with kindness as with bullying. Old 10-09-2015, 09:21 PM #45 Originally Posted by Bottesini View Post I fail to see how taking away addictive internet privileges after getting lazy, and being lied to for months would be considered bullying. As a parent with actual children, kindness and affection was given in pades for months after her surgery and activation. Only then to be deceived, all while ignoring the rehabilitation requirements spelled out by the medical professionals. People who know a heck of a lot more than you. If you'll all notice, after asking the so-called affectionate experts, not one has a solution to the issue after all their so-called kindness, love, and understanding had failed. jag Old 10-09-2015, 09:42 PM #46 Reba Retired Terp Reba's Avatar Join Date: Jun 2004 Location: South Carolina Posts: 51,267 Likes: 2,108 Liked 2,972 Times in 1,727 Posts It's not necessary to insult "you people" or call posters rude names in order to make a point. Restricting privileges, such as cell phones and computers, is not AD members who have overcome horrible childhoods to become successful parents themselves should be praised, not criticized. They have adult children which they can point to as proof of success. Several of us have years of parenting experience. My grandchildren are older than your children. That isn't to say one parent's method is better than another, per se; not all children, even in the same family, need the same kind of parenting. Nobody here has attacked everything you've done, so there's no need to be so defensive. dogmom, hoichi Reba is offline Find More Posts by Reba Old 10-09-2015, 09:59 PM #47 . . . Especially after your child wasted months of her life playing on a stupid computer, accomplishing nothing with her life, all because I Since none of us are brilliant ignoramuses, how do you expect to get a erious response? Where has unconditional love failed? That's a risk you take in posting your personal business here. You're not always going to get affirmation responses. Honest responses, yes; affirmations and strokes, not always. And these would be co-workers and friends, all hearing? That's hyperbole, and you know it. No one here stated that you should let your kids do whatever they want without consequences. BecLak, dogmom, hoichi Old 10-09-2015, 10:01 PM #48 whatdidyousay! whatdidyousay!'s Avatar Join Date: May 2009 Location: Earth Posts: 25,950 Likes: 2,669 Liked 1,484 Times in 1,150 Posts I am getting to understand were stand with your daughter and it sounds like you guys had worked things out and that is great . Yes , love can be tough and I was more concerned about being a good mom and not my daughter best friend. I think that is what a lot of parents do today. Mark England December 6, 1983 ~ February 15, 2015 RIP Mark , You'll not be forgotten . whatdidyousay! is offline Find More Posts by whatdidyousay! Old 10-09-2015, 10:08 PM #49 Originally Posted by Reba View Post So you think that I'm being harsh after the first words out of the mouths of "these people" were things like calling me a "Tyrant", dictator, an "Abusive Parent", or that I'm coercing her, manipulating her, not giving her choice over her body, and forcing her to do all these horrible things? Don't be so naive. Calling them "these people" is being quite generous on my behalf, after their incredibly stupid remarks. I can think of much better ways to express myself if you really want to know what I think when I get called names that fall into the category of criminality. It's flat out offensive. As a good parent, the first thing they do is attack me when months of affectionate parenting skills fail, and I am forced to apply discipline to solve a serious problem. And for me to tell them they are an ignorant moron, when they actually are ignorant of the entirety of the situation, yet claiming to know it all, is just flat out worth the title. Like it or not. If anyone should be apologizing it's the ones who think they know everything about raising children, when I'm certain by their own ignorance, some of them may not even have their own. Oh and btw.... my daughter just called me on my wife's cell phone and aid "Dad, you wouldn't believe it, I was downstairs watching TV, and I heard Mom walking around upstairs with her high heels. I never heard that before. OMG!!!" I said, "Excellent, good job sweetie!" And this, after only 2 FULL days now of wearing her CI. She didn't sound abused to me. Oh, WOE IS ME, that poor child... boo-hoo. Old 10-09-2015, 10:20 PM #50 on my behalf. Do you think your posts gain credibility if you use the same insulting ways of other posters? Or would a reasoned response carry more weight? If anything, angry responses could reinforce some ADers' opinions that you're a bit heavy handed in your parenting. And for me to tell them they are a they an ignorant moron, when they actually are ignorant of the entirety of the situation, yet claiming to know it all, is just flat out worth the title. Trite but still true--two wrongs don't make a right. Name calling, as any parent knows, just escalates emotions and resolves nothing. ignorance, some of them don't even have their own. Let's see--caz, Botts, hoichi, RR, wdys, myself--all parents, some grandparents (forgive me if I overlooked someone). BecLak, Bottesini, whatdidyousay! Old 10-09-2015, 10:26 PM #51 Myself was an abused child, on the street at 15...my 2 biological children were spoiled rotten...I would not discipline them. They did not turn out well at all and I was and am heart broken over it....As for my 3 adopted grandchildren, I used discipline, a totally different approach to parenting. All 3 are successful and never been into any trouble with the Law, gotton a DUI or a felony....We have to give kids tructure...and consequences for their choices in life. The OP is the parent and perhaps his parenting skills may differ from others...it is his child and I feel he is doing what he feels and knows is best for her. Old 10-09-2015, 10:31 PM #52 You're right, I won't call them ignorant morons anymore. I'll just refer to them as "these people". I wouldn't want to hurt anyone's feelings after they spent numerous posts slandering me as an abusive parent. I only get angry when faced with such stupidity that my intellect has no course of action that "these people" can comprehend. It's like trying to explain the fundamentals of subatomic macroscopic cross ections to a stoned koala bear who ate too much eucalyptus. Sometimes a good verbal lashing is needed to explain things to people who just don't get it. Using superior language skills and excessive kindness is omething "these people" actually use to attack others in order to try and wave their own flag. And frankly, it's pathetic. Will I use vulgarity? No. Will I instigate an argument? No. But "these people" certainly seem more than willing to do so. I won't tand by and be slandered by them when they have absolutely no idea what the entirety of the situation is, and don't know what they are talking about. How would you like it if someone out of nowhere suddenly verbally slaps you in the face, calls you abusive, and then proceeds to tell you how to raise your child? Now THAT'S RUDE!!! Old 10-09-2015, 10:41 PM #53 And you fully realize that referring to posters as "these people" is very patronizing and inflammatory. Sigh . . . don't get it. Using superior language skills is something "these people" actually don't understand. More with the patronizing insults. Using insulting language is hardly "superior language skills." tand by and be slandered by "these people" when they have absolutely no idea what they are talking about. If we have misunderstood anything you've posted please feel free to correct that misunderstanding. I can tell you right now, people are less likely to accept what you post if you insult them. Same as you don't accept whatever others post because they use rude language. It gets nowhere. BecLak, dogmom Old 10-09-2015, 10:46 PM #54 . . . How would you like it if someone out of nowhere suddenly verbally laps you in the face, calls you abusive, and then proceeds to tell you how to raise your child? What makes you so sure that hasn't happened to me? BTW, it wasn't exactly "out of nowhere." You made a highly-charged original post on an open forum--you must have expected consequences. Old 10-09-2015, 10:49 PM #55 It was not a highly charged post. I was simply telling everyone what has happened, and that as a parent, I was truly angered by the lies, and deceitfulness of my daughter, whom I put great trust in. As a result, I did what a parent needs to do, in order to stop a serious problem when being kind and affectionate for months, horribly failed. So, I'm one guy that got piled on by a whole gaggle of "these people", got a bit defensive after being thrashed about, post after post, until finally I made my case, and proved them wrong... primarily with proper language, using only one insult, and you then spend numerous posts to proceed to lecture me on how I need to be nicer and not insult people, Ok Reba, when you take the time to start telling every single other person in this thread that you just listed, who spent their time giving me a verbal whipping, by accusing me of being abusive and manipulative, then maybe you won't be such a hypocrite. Come on Reba, let's see it! The next 10 posts by you had better be individually titled to every other person you listed with a lengthy lesson on verbal etiquette. Old 10-09-2015, 10:50 PM #56 and wave their own flag. And I won't be stand by and have you call members here 'these people' ! You have admitted your title of your thread come on rather harsh ! 'She in BIG trouble' . People that grew up with an abusive parent(s) know every will what this meant! So of course any normal person would be concerned about the child . I am not looking for you pity but I had a drunken abusive dad so when I saw your a title red flag went up. What would you think if a total stranger came up to you and said " My kid is BIG trouble ! " Old 10-09-2015, 11:00 PM #57 Jezie Jezie's Avatar Join Date: Mar 2014 Location: Georgia Posts: 1,613 Likes: 168 Liked 312 Times in 236 Posts I am curious...you have made a lot public, and it has piqued my curiosity.. Do you sign? Does you daughter have contact with the deaf community in your area? Also curious, whose idea was the implant and how did that come up? __________________________________________________________________ Last edited by Jezie; 10-09-2015 at 11:42 PM. Jezie is offline Find More Posts by Jezie Old 10-09-2015, 11:01 PM #58 me verbal whipping, by accusing me of being abusive and manipulative, They've all experienced my criticism at times in the past. They know where I stand. You're the newbie here. I'm not lecturing you. I'm trying to give you ome insight into the dynamics here. Take it or leave it. See my above reply. I'm not here to play posting games. There's no need to hash the same things over and over. It's time to get back on topic, so I'm moving on. My closing thought--no one changes anyone's mind by using insults--no one on either side of a debate. BecLak Old 10-09-2015, 11:06 PM #59 So, you just assumed I abused my child without even reading it? The first thing I said in the very first post, was she got her internet/cell phone privileges taken away for lying... THAT'S IT!!! You have never heard of sarcasm? Sometimes when your child is in BIG trouble, it just might not be a beating with a cat-o-nine tails, a 2x4, or maybe a pillow case full of bars of soap. Just sayin'. It might actually be something else.... like taking away a ridiculous electronic gadget that she spends way too much time on. Maybe you need to read first, and try to use some intellect to understand the context of what is written before you just fly off the handle and assume I'm some kind of abusive parent. And if you have a hard time understanding plain English... Then ASK!!! I'm not calling them names either. I am referring to them as "these people" because it IS a group of very verbally offensive people that are slandering me. So, I am not using insults anymore. Just referring to the whole group of people as "these people". It's entirely correct. Would you prefer if I sat and listed all those names in sequence, every ingle time I refer to them? That's ridiculous. Old 10-09-2015, 11:46 PM #60 Barbaro Barbaro's Avatar Join Date: Jun 2007 Location: San Antonio Posts: 1,597 Likes: 8 Liked 41 Times in 33 Posts This situation feels familiar to me. You sound like my father. He ranted about spending a fortune on private speech therapy on me for years. Anyway, he finally had accepted it later. I do understand that getting a CI is very expensive and so is speech therapy. I know you're upset and betrayed by her act. Why did your daughter get tired of her CI? Had she had any experience like exhaustion and headache from wearing a CI? I read your previous posts and other thread. It sounds like her mind get tired from listening through the CI. Is that why she didn't wear it for a whole ummer? I think it's not a good idea for her to watch youtube videos about others getting positive feedbacks from CI. She feels very discouraged and probably jealous. That will make it worse. I suggest you encourage her to talk to others (teen or early 20s) with CI in person. You said that she was suppose to hang out with her friends during the ummer. Is she not interested in hanging out with others? Or is she just avoiding them? We know what we are but not what we may be. -Author:Shakespeare Barbaro is offline Find More Posts by Barbaro « Previous Thread | Next Thread » Thread Tools Show Printable Version Show Printable Version Email this Page Email this Page Display Modes Linear Mode Linear Mode Hybrid Mode Switch to Hybrid Mode Threaded Mode Switch to Threaded Mode Posting Rules You may not post new threads You may not post replies You may not post attachments You may not edit your posts BB code is On Smilies are On [IMG] code is On HTML code is Off Forum Rules Forum Jump [ Hearing Aids & Cochlear Implants___] Go All times are GMT -5. The time now is 01:18 PM. [-- Default] Contact Us - All Deaf - Archive - Privacy - Advertise - Links - Top Join AllDeaf on Facebook! Follow us on Twitter! AllDeaf proudly supports St. Jude Children's Research Hospital Copyright © 2002-2016, AllDeaf.com. All Rights Reserved. RSS Feed AllDeaf.com Perks - Advertise - Spy - Who Quoted Me Blogs Recent Entries Best Entries Best Blogs Blog List Search Blogs Go Back AllDeaf.com > Deaf Interests > Hearing Aids & Cochlear Implants Reload this Page She's in BIG trouble!!! LIKE AllDeaf on Facebook FOLLOW AllDeaf on Twitter User Name User Name_ [ ] Remember Me? Password __________ Log in Advertisement Register Blogs FAQ Social Groups Calendar Search Today's Posts Mark Forums Read Closed Thread Page 3 of 3 < 1 2 3 Thread Tools Display Modes Old 10-10-2015, 12:07 AM #61 Condor1970 Registered User Join Date: Oct 2014 Posts: 104 Likes: 0 Liked 58 Times in 29 Posts Quote: Originally Posted by Barbaro View Post This situation feels familiar to me. You sound like my father. He ranted about spending a fortune on private speech therapy on me for years. Anyway, he finally had accepted it later. I do understand that getting a CI is very expensive and so is speech therapy. I know you're upset and betrayed by her act. Why did your daughter get tired of her CI? Had she had any experience like exhaustion and headache from wearing a CI? I read your previous posts and other thread. It sounds like her mind get tired from listening through the CI. Is that why she didn't wear it for a whole ummer? I think it's not a good idea for her to watch youtube videos about others getting positive feedbacks from CI. She feels very discouraged and probably jealous. That will make it worse. I suggest you encourage her to talk to others (teen or early 20s) with CI in person. You said that she was suppose to hang out with her friends during the ummer. Is she not interested in hanging out with others? Or is she just avoiding them? You can migrate over to the Activation thread, I explain her laziness a little better there. She has lots of friends. She just got lazy, because it wasn't working fast enough for her. She wanted everything NOW, even after I told her it would take months and months of hard work. I had come to the conclusion that the CI may not have worked well for her, which is why she was not progressing much. I was more than willing to accept the fact that this technology is different for everyone. That's life. Turns out, she is not progressing, because she hasn't been wearing it, and lying about it. So the internet privileges are gone. That's a no brainer in my opinion. And yes, she knows the YouTube videos are a very bad influence. Condor1970 is offline View Public Profile Find More Posts by Condor1970 Old 10-10-2015, 03:59 AM #62 Calvin Moderator Calvin's Avatar Join Date: Nov 2005 Location: California Posts: 9,373 Likes: 216 Liked 1,667 Times in 810 Posts Mod note: Upon reviewing this thread, this is a family matter for the OP. I can understand about the money involved for the CI but the drama spewed in this thread is total unnecessary. We all expect to be criticized especially in forums and other social media such as Facebook. There is a line that everyone knows: "There is two sides to every story". There is no need to be insulting and troll to make a point... please refrain from using "these people" and name callings. Threads do not last long when that happens. Every parents raise their children they want to be raised. Again, this is family matter and it is wise that it should stay in the family. If you want to rant or have a piece of mind... that's fine but keep in mind, expect to be criticized for the actions and nature of the story. That is the nature of the public (forum, social media, etc). I'm closing this thread and it is time to move on. Thank you. Likes: (1) drphil Calvin is offline Find More Posts by Calvin « Previous Thread | Next Thread » Thread Tools Show Printable Version Show Printable Version Email this Page Email this Page Display Modes Linear Mode Linear Mode Hybrid Mode Switch to Hybrid Mode Threaded Mode Switch to Threaded Mode Posting Rules You may not post new threads You may not post replies You may not post attachments You may not edit your posts __________________________________________________________________ BB code is On Smilies are On [IMG] code is On HTML code is Off Forum Rules Forum Jump [ Hearing Aids & Cochlear Implants___] Go All times are GMT -5. The time now is 01:18 PM. [-- Default] Contact Us - All Deaf - Archive - Privacy - Advertise - Links - Top Join AllDeaf on Facebook! Follow us on Twitter! AllDeaf proudly supports St. Jude Children's Research Hospital Copyright © 2002-2016, AllDeaf.com. All Rights Reserved. RSS Feed AllDeaf.com Perks - Advertise - Spy - Who Quoted Me Blogs Recent Entries Best Entries Best Blogs Blog List Search Blogs Go Back AllDeaf.com > Deaf Interests > Hearing Aids & Cochlear Implants Reload this Page ok here goes LIKE AllDeaf on Facebook FOLLOW AllDeaf on Twitter User Name User Name_ [ ] Remember Me? Password __________ Log in Advertisement Register Blogs FAQ Social Groups Calendar Search Today's Posts Mark Forums Read Reply Thread Tools Display Modes Old 09-22-2015, 08:45 AM #1 geoff Registered User geoff's Avatar Join Date: Sep 2015 Location: Atl Posts: 99 Likes: 64 Liked 48 Times in 34 Posts ok here goes __________________________________________________________________ A lot of folks have posted their journey in getting Cochlear implants. Mine has just begun. I`m still not sure what I will decide to do or even if I will qualify. Everything I have read on it makes me feel like I fit the criteria. Today I am getting my MRI and I was told they will be giving me more test. I have no idea what kind of test other than the typical hearing tones and words. If anyone knows what else they may do let me know. I have a follow up appointment Friday with the ENT so I`m guessing I won`t get very much information today. geoff is offline Reply With Quote View Public Profile Find More Posts by geoff Old 09-22-2015, 02:41 PM #2 hoichi hoichi's Avatar Join Date: Dec 2013 Location: Dancing my way to oblivion Posts: 5,187 Likes: 207 Liked 653 Times in 512 Posts Put the effort in learning sign. You'l be better for it. But if your hearts set in the drill, fair enough, Are aids no longer working for you? __________________ ..."sign will set you free". a genie signed to me. as a mirror now reflect it. to other hands into other eyes, signs our greatest treasure, its light wants to be shared ..im ...that shadow with a cigarette, A Deaf guy who knows whats at take..... hoichi is offline Reply With Quote Find More Posts by hoichi Old 09-22-2015, 02:59 PM #3 In my right ear no its not geoff is offline Reply With Quote Old 09-22-2015, 03:07 PM #4 Quote: Originally Posted by geoff View Post No plm. Best now to dedicate to sign. I dont wear aids, world is good. Life good. Full, sign. Is bridge. Old 09-22-2015, 10:36 PM #5 deafdyke Join Date: Mar 2003 Location: Trebekistan Posts: 14,908 Likes: 709 Liked 193 Times in 150 Posts Send a message via AIM to deafdyke Meaning you've totally maxed out on that ear? No response whatsoever, or very low response? I would opt for a CI then. As I've said progressive loss folks do very well with a CI. deafdyke is offline Reply With Quote Find More Posts by deafdyke Old 09-22-2015, 10:38 PM #6 onocativo onocativo's Avatar Join Date: Sep 2012 Location: House Posts: 7,525 Likes: 609 Liked 1,016 Times in 490 Posts I was nervous and here I am today. My lip reading is going to crap now, and still learning ASL as Im completely Deaf without my CI's. But I love the silence from time to time.... its a lot to get used to but it all falls into place. Kindness is a language which the deaf can hear and the blind can see. onocativo is online now Reply With Quote Find More Posts by sonocativo Old 09-22-2015, 10:43 PM #7 Originally Posted by hoichi View Post True, but he's progressively deaf. He does need that tool. Old 09-22-2015, 10:55 PM #8 outthpaw outthpaw's Avatar Join Date: Jan 2011 Location: Sparks, NV Posts: 1,127 Likes: 13 Liked 274 Times in 180 Posts Send a message via AIM to soutthpaw There is still the risk of significant side effects from the surgery. Might want to investigate those more too. My second implant messed up my balance in that I can't do a forward flip or roll or hang my head upside down without getting severe Nausea/ motion sickness for several hours. I used to love going on roller coasters too. Also he didn't think there was much chance of it improving if implant was removed. Surgeon had no idea of the cause either. Also changed my taste sensation as well. I choose Happiness over Society outthpaw is offline Reply With Quote Find More Posts by soutthpaw Old 09-23-2015, 07:05 AM #9 My hearing aids were maxed out in both ears. But in my left I still can hear a bit with them and understand. In my right ear I hear very little if anything and have absolutely no comprehension. They are wanting to do it in the right ear. I`m thinking I will do it. I pretty much have nothing to lose. I do still want to learn ASL. I`ve been out of work for over a month now and realize my job is not what`s best for me. Don`t get me wrong I`m not going to up and quit. But now I would like to learn ASL and maybe get a degree and teach. My wife is a teacher and be around more people so if anyone is out there feeling they are the only one like I did growing up I can help. This forum has been so helpful the past week. When I grew up we didn`t have the internet or cell phones so it wasn`t as easy to reach out. Likes: (1) Old 09-23-2015, 11:23 PM #10 Sounds like you're on the right track! And OMG that would be AMAZING if you became an ASL fluent TOD!!!!! Georgia is SO bad with inclusive education of dhh kids....I know someone (HOH and oral) who is the product of Georgia schools who still has issues with the difference between boycotted and boycotting! Old 09-24-2015, 01:42 AM #11 Jetti Jetti's Avatar Location: NJ Posts: 15 Likes: 0 Liked 3 Times in 3 Posts My fiancé was born profoundly Deaf and got a CI when he was 15. He can hear some things with the CI but cannot process speech. He uses sign and lipreads very well. He is very happy with his decision. The only problem he has with the CI is vertigo when he is laying down with his head in an odd position. Other than that, it has been great! He has one foot in the hearing world and one foot in the Deaf world. I hope it goes well for you. Jetti is offline Reply With Quote Find More Posts by Jetti Old 09-24-2015, 04:52 AM #12 Thank you guys. I'm meeting with my job this morning to see what they want to do with me. I think I'm more nervous about that. I feel like they will move me to a different department. If so that's fine but it will be like starting over and I hope I like where they move me if they do. I work in an auto plant and I drive around and supply the assembly line. With my hearing shot I don't think they will want me to drive all over the place in all that traffic Old 09-24-2015, 12:12 PM #13 Bing Deaf doesnt affect your ability to drive. Dont accept that nonsense from them... Old 09-24-2015, 12:16 PM #14 caz caz's Avatar Join Date: Oct 2006 Posts: 3,046 Likes: 510 Liked 520 Times in 412 Posts Geof deaf make better drivers than hearing also best life guards HELLO! caz is online now Reply With Quote Find More Posts by caz Old 09-24-2015, 01:06 PM #15 Show them studies that prove Deaf people are better drivers than hearing people. Hearing people get distracted by sounds (radio, constructions, other noises), while Deaf people have better peripheral vision and noise does not distract them. Old 09-24-2015, 01:37 PM #16 HA! I`m sorry You all misunderstood what I do. I drive what is called a P.I.V. A Powered Industrial Vehicle. Where I`m at is a lot of pedestrian traffic. ALOT! and also other PIVs We use our horns to communicate with one another. I have driven out into busy aisles before in front of people because I didn't hear the horns. But now that I've lost all hearing in the left ear I`m facing the facts that maybe I need to move somewhere else. I talked to the company doctor today and he was very understanding. He said I have been successful in my job for the past 5 years but with what is going on maybe we need to move to another department at least temporarily. He hopes after my surgery I will recover and hear better than I do now. So right now I need to schedule the surgery, find out how long until I can come back, and then see if I need to move out of my current department. It could be a good thing. Maybe I will land somewhere better. Old 09-25-2015, 01:21 PM #17 BleedingPurist Join Date: Jan 2012 Posts: 552 Likes: 79 Liked 52 Times in 31 Posts In all likelihood, you are going to have much better hearing than you have had following activation and rehab. Approaching surgery/recovery as a temporary disability with job reassignment would be ideal. It's difficult to predict how fast one will recover. I had hearing immediately, but it is always overwhelming for everyone because you are no longer limited to a small hearing window. That means you'll be re-learning to hear with much more information. I worked in an office at the time, so my daily environment was "quiet." Keep in mind that during those days, just going in the breakroom/kitchen would be overwhelming with the hum of the vending machines, refrigerators, and microwave ovens. Your work environment will definitely be overwhelming. Today, I work in a similar environment and do depend on my hearing for afety and communication. You should be hoping and expecting to hear better in the end. That is generally what happens, particularly for people who are very auditory- inclined to begin with. This is a very exciting time in your life! BleedingPurist is offline Reply With Quote Find More Posts by BleedingPurist Old 09-25-2015, 01:40 PM #18 Thank you. I am excited. And as of right now my job has been very upportive Old 09-25-2015, 01:56 PM #19 Ok. I went to the doctor today and he said everything on his end looked good enough to go ahead with the surgery. My CT scan showed some concern with my sinuses so I am seeing a different doctor about that Monday. I'm guessing maybe that is why I have had that fluid blocking my ear off and on for the past few years. I have been battleing a sinus infection for the past month but never really had any issues before. I`m not too concerned about it. If the sinus doctor thinks I need urgery with that we will still do the CI first so I can get my lazy butt back to work as soon as possible. Right now we are waiting for them to contact the insurance company and by Wednesday we should maybe have a date. It will be an out patient surgery and last about 2-3 hours. They will make a small cut in my head and implant an internal device. I will be completely deaf until 4-5 weeks after. Then I will be given an external device that will be activated. After that its just a process of learning and recognizing sounds again Likes: (3) ambrosia, BleedingPurist, deafdyke Old 09-25-2015, 02:35 PM #20 Annie09Z Annie09Z's Avatar Join Date: Jun 2009 Location: Maine Posts: 1,653 Likes: 1,397 Liked 748 Times in 542 Posts Wishing you all the best, and a smooth quick recovery! Annie09Z is offline Reply With Quote Visit Annie09Z's homepage! Find More Posts by Annie09Z « Previous Thread | Next Thread » Thread Tools Show Printable Version Show Printable Version Email this Page Email this Page Display Modes Linear Mode Linear Mode Hybrid Mode Switch to Hybrid Mode Threaded Mode Switch to Threaded Mode Posting Rules You may not post new threads You may not post replies You may not post attachments You may not edit your posts BB code is On Smilies are On [IMG] code is On HTML code is Off Forum Rules Forum Jump [ Hearing Aids & Cochlear Implants___] Go All times are GMT -5. The time now is 01:18 PM. [-- Default] Contact Us - All Deaf - Archive - Privacy - Advertise - Links - Top Join AllDeaf on Facebook! Follow us on Twitter! AllDeaf proudly supports St. Jude Children's Research Hospital Copyright © 2002-2016, AllDeaf.com. All Rights Reserved. RSS Feed AllDeaf.com Perks - Advertise - Spy - Who Quoted Me Blogs Recent Entries Best Entries Best Blogs Blog List Search Blogs Go Back AllDeaf.com > Deaf Interests > Hearing Aids & Cochlear Implants Reload this Page Otologics carina implant, anyone? LIKE AllDeaf on Facebook FOLLOW AllDeaf on Twitter User Name User Name_ [ ] Remember Me? Password __________ Log in Advertisement Register Blogs FAQ Social Groups Calendar Search Today's Posts Mark Forums Read Reply Page 1 of 2 1 2 > Thread Tools Display Modes Old 11-13-2008, 11:45 AM #1 toffee_pie Registered User Join Date: May 2007 Posts: 6 Likes: 0 Liked 0 Times in 0 Posts Otologics carina implant, anyone? __________________________________________________________________ Hi Folks, Has anyone here experience of the Carina implant? I am using GN Azure at the moment in both ears, I am considering some ort of implant in the future, perhaps a year or two I am wondering how they function during things like cell phone usage etc. thanks... toffee_pie is offline Reply With Quote View Public Profile Find More Posts by toffee_pie Old 11-13-2008, 12:15 PM #2 Hear Again Hear Again's Avatar Join Date: Jan 2005 Location: Wisconsin Posts: 20,114 Blog Entries: 6 Here are 3 testimonials from those who have the Carina: The Hearing Study | Carina Fully Implantable Hearing Device Hear Again is offline Reply With Quote Find More Posts by Hear Again View Blog Old 11-13-2008, 12:25 PM #3 I have noticed them already, thanks. I would like to see some feedback from an ordinary 'joe the builder' type and not someone on a website from the manufacturer, if you get my drift... I mean they are hardly going to say anything bad about their product are they. Old 11-13-2008, 12:58 PM #4 john57 john57's Avatar Join Date: Jul 2007 Location: Colorado Posts: 455 they are still doing trails and finding ways to improve speech discrimination with the implantable hearing aid. The microphone that is implanted under the skin has to be more sensitive while blocking out the body sounds that the mic may pick up. I heard some have good results from it and some that had to much hearing loss for it to work. john57 is offline Reply With Quote Find More Posts by john57 Old 11-13-2008, 01:33 PM #5 Quote: Originally Posted by toffee_pie View Post Fair enough. I was only trying to help. Old 11-13-2008, 03:12 PM #6 Hey, no its cool. I don't mean to offend you... I am just a bit curious about this thats all. cheers. Old 11-13-2008, 03:16 PM #7 Bottesini Old Deaf Ranter Bottesini's Avatar Join Date: Mar 2008 Location: HFA Posts: 43,008 Blog Entries: 2 Likes: 1,696 Liked 1,718 Times in 935 Posts Originally Posted by Hear Again View Post How dare you! __________________ Bottesini is offline Reply With Quote Find More Posts by Bottesini Old 11-13-2008, 03:19 PM #8 Carina is for moderate hearing loss. There probably are not many here who would qualify. Bottesini is offline Reply With Quote Old 11-13-2008, 04:52 PM #9 Originally Posted by Bottesini View Post Hear Again is offline Reply With Quote Old 11-13-2008, 04:54 PM #10 Okay. No problem. Old 11-13-2008, 05:45 PM #11 etalton etalton's Avatar Join Date: Jul 2008 Location: Eastern North Carolina Posts: 790 Send a message via AIM to etalton Send a message via Yahoo to etalton Carina implantable hearing aid gets showed off - Engadget Implantable Hearing Aids There are several articles at this site. Hope that helps... E.T. Left Ear Implanted 11-07-08 (Nucleus Freedom) Activation 12-18-08 Right Ear Implanted 3-3-2010(N5) Activation 3-11-10 http://et-mybionicjourney.blogspot.com/ etalton is offline Reply With Quote Find More Posts by etalton Old 11-13-2008, 07:07 PM #12 ClearSky ClearSky's Avatar Join Date: Jun 2006 Posts: 1,151 toffee pie, I have not heard of Carina, but I agree that it's important to talk to other people about it. I just don't know where to find more people who use Carina. Here's another implantable hearing device that you could check out. It's a Vibrant Soundbridge. You'll have to wear an external headpiece. Check it out: VIBRANT MED-EL It's for sensoreneural hearing loss. It's for those with modereate-to-severe hearing loss, too. It's implantable in the middle ear. Have you heard about BAHA hearing device? ClearSky is offline Reply With Quote Find More Posts by ClearSky Old 11-13-2008, 07:07 PM #13 Just an observation. It's amazing how deaf people get mixed reactions from considering cochlear implants, but when it comes to implantable hearing devices or devices for people with moderate-to-severe hearing loss, people are helpful without saying a negative thing. Old 11-13-2008, 07:26 PM #14 Originally Posted by ClearSky View Post Good point, ClearSky. Old 09-27-2009, 12:50 PM #15 harder65 Join Date: Sep 2009 Posts: 4 Liked 4 Times in 4 Posts I have just had a carina implant operation in Hamburg tuesday 22nd of eptember 2009. At the moment I still have bandaid around my head and I cannot hear much on the ear. I was told at the hospital it is quite normal as it takes around 2 weeks for blood and liquid to leave the middle ear. I will let you know how it is going. Likes: (1) maari vekki harder65 is offline Reply With Quote Find More Posts by harder65 Old 10-11-2009, 11:56 AM #16 CrazyOne Join Date: May 2009 Posts: 119 This device is investigational in the USA and you cannot get one in the USA until the company would gain approval (FDA approval of any device is not guaranteed and the results of any trial is typically not announced until an FDA decision is made). If FDA approval is given, you will be able to determine the efficacy of the device and make a more informed decision. C1 CrazyOne is offline Reply With Quote Find More Posts by CrazyOne Old 10-21-2009, 05:44 AM #17 Carina Otologic operation I had an otologic operation in Hamburg 22nd of september 2009. 5 month before this date I had a meeting with Professor Verse from Hospital in Hamburg and Thomas Witt from Otologics. I asked questions and they told me about the operation and the implant. I went home to figure out whether this was something for me or not. I took contact to Veronika Koch who has the carina. I decided to go ahead and went to germany sept. 21st 2009 where I had a CT scanning made of my head. Operation day. Sept. 22nd I went to the hospital 7 in the morning and was operated from app. 9-12. 1 oclock pm I woke up from the narcosis. I was totally deaf on the operated ear because og blood and liquid after operation. 3 oclock I went back to my hotel with a huge badage around my head and a drain (bottle where the blood could run into) was attached to the back of my head. I did not have any pain. My nose kept running - felt like I had a cold. I was told it is because the ear are producing liquid which runs out of a tube in the ear. I only slept for a few hours - then I sat up reading - cause I felt the best sitting up. I will not call it pain - but an unconfortable feeling. Day 2 Next morning at 10 I went back to hospital for check up. When they cut off the bandage (which is very tight) I felt so sick I had to lie down. They gave me a drop and 10 minutes later I was fine again. They changed the bandage and I should come back in the evening. In the evening they gave me a drop for pain. The night was exactly the same as the first night. Day 3 I went to hospital 10 in the morning. They took out the drain from the back of my head and changed the bandage. The took a bone leading hearing test - which showed I could have lost a little of my usual hearing. Then we drove back to Denmark. 2 week after operation The swelling of the head has gone - and I feel like I have black and blue marks in the head. The skin and scalp has to get used to the implant. Still can´t hear anything. My own doctor have removed the stiches - and the shaved hairs has tarted to grow out. (You cannot see the shaving as it is under the upper hair. My hair was so filtered after the operation I had to cut ome of it of. 4 weeks after operation I still feel now and then that I have a blue mark. My hearing has improved, but not back to what it was before operation and it is still clicking in the ear and my own voice still sounds like I am in a tunnel. I have no problems sleeping. There is only 1 place where I can feel i have something under my skin - between over my ear and temple I can feel an edge. I will write further in 4 weeks. Old 11-05-2009, 05:59 AM #18 djo Join Date: Nov 2009 Posts: 1 any more news, please tell us more... how are things now djo is offline Reply With Quote Find More Posts by djo Old 11-19-2009, 07:39 AM #19 Here 8 weeks after operation I had the Carina activated yesterday. It took around 2 hours - this is the first fitting of many. I hear my own ounds - like when I swallow, my hair going back and forth over the microfone, when I eat (carrots for example) it sounds very loud. My brain has to get used to all these sounds. The volume will be slowly raised át each fitting till maximum - hereafter I can ajust the volume down with the remote control. In january I will tell you how my first month with the activation has been, and I am travelling by plane in december - I will inform you what is happening in the security control!! Old 11-21-2009, 01:56 AM #20 Let us know if you have to turn the device off during the flight or if the function changes during the flight. That would be very interesting to know. I don't think security should be an issue. As with most implants, I would think that you have an identification card showing you have the implant? Old 11-21-2009, 07:11 PM #21 rockdrummer Guest Posts: n/a Is it suppose to be better than a CI? Reply With Quote Old 11-25-2009, 11:30 AM #22 carina It is different than a CI. You don´t destroy your usual hearing. My usual hearing goes from 20-30 down to 50-60 and up again to 20-30. This means that if they find a way to cure hearing loss with stemmcells - it is still possible. Professor Stefan Heller is telling about it on youtube. Old 12-11-2009, 10:46 AM #23 How is the Carina working for you? What level of functional gain are you getting (500Hz and 1000Hz, and 2000Hz). Can you describe how it sounds? -C1 Old 01-11-2012, 04:36 AM #24 tream2525 Join Date: Aug 2009 Posts: 112 This will never help profound loss tream2525 is offline Reply With Quote Find More Posts by stream2525 Old 01-11-2012, 09:45 AM #25 drphil Join Date: Jul 2010 Location: Toronto Ontario Posts: 4,793 Likes: 121 Liked 28 Times in 25 Posts From reading the above=Carina hearing aid-is not a Cochlear Implant. Thus can't be compared at all. Oddly enough the first time I ever heard of Carina is right here-now. How it compares to other Hearing Aids- cost wise? Get Real:Implanted Sunnybrook/Toronto -Advanced Bionics-Harmony activated Aug/07 drphil is offline Reply With Quote Find More Posts by drphil Old 01-26-2012, 08:16 AM #26 RoseRodent RoseRodent's Avatar Join Date: Mar 2010 Location: Scotland Posts: 339 Liked 1 Time in 1 Post Originally Posted by drphil View Post Right now since they are done in extremely small numbers they are very expensive, think I was told £20,000GBP each side. They will always be more expensive than hearing aids because there is a surgery involved and surgery has costs - anaesthetics, surgeons, aneasthesiologist, theater, etc. Plus you may need to travel to have it all done. The cost of the device would only come down if it becomes popular, but it is hard for something to become popular when it's very expensive. Harder, can I ask why you decided to get this done? I mean was it because you don't like the look of hearing aids, you like to do sport in water, you wanted a better result? Thanks. RoseRodent is offline Reply With Quote Find More Posts by RoseRodent Old 01-29-2012, 10:54 AM #27 coolgirlspyer90 coolgirlspyer90's Avatar Join Date: Jun 2008 Posts: 1,671 Liked 3 Times in 3 Posts I think i would stick with Cochlear. and Besides, if somebody who is deaf and suddenly decides to get Carina, how will one believe that they are deaf? i mean it doesn't really make sense to me, because being deaf is an important part of me so, no, i wouldn't do it. coolgirlspyer90 is offline Reply With Quote Find More Posts by coolgirlspyer90 Old 01-29-2012, 11:28 AM #28 messymama messymama's Avatar Join Date: Apr 2011 Location: italy I think the fact they're not used for pediatric purpose may have omething to do with it. But please correct me if I'm wrong. Proud mum of two blessings: 5yo hearing girl and 3yo profoundly deaf boy messymama is offline Reply With Quote Find More Posts by messymama Old 01-29-2012, 08:33 PM #29 deafdyke Join Date: Mar 2003 Location: Trebekistan Posts: 14,908 Likes: 709 Liked 193 Times in 150 Posts Send a message via AIM to deafdyke Originally Posted by coolgirlspyer90 View Post RIGHT ON!!!!!!!!!!!!!!! Yeah, it's good for age related losses.....but for crying out loud I LIKE having a BTE. It's a clue that I am HOH...and I love showing off my earmolds and colored aids...matter of fact I wish my aids were bigger and more noticable! deafdyke is offline Reply With Quote Find More Posts by deafdyke Old 01-29-2012, 08:41 PM #30 Oh and there was some weird tubeless implant thing awhile back that hit the news....seems to have shrunk without a trace. Most of the hype about the new technology is news release driven. « Previous Thread | Next Thread » Thread Tools Show Printable Version Show Printable Version Email this Page Email this Page Display Modes Linear Mode Linear Mode Hybrid Mode Switch to Hybrid Mode Threaded Mode Switch to Threaded Mode Posting Rules You may not post new threads You may not post replies You may not post attachments You may not edit your posts BB code is On Smilies are On [IMG] code is On HTML code is Off Forum Rules Forum Jump [ Hearing Aids & Cochlear Implants___] Go All times are GMT -5. The time now is 01:18 PM. [-- Default] Contact Us - All Deaf - Archive - Privacy - Advertise - Links - Top Join AllDeaf on Facebook! Follow us on Twitter! AllDeaf proudly supports St. Jude Children's Research Hospital Copyright © 2002-2016, AllDeaf.com. All Rights Reserved. RSS Feed AllDeaf.com Perks - Advertise - Spy - Who Quoted Me Blogs Recent Entries Best Entries Best Blogs Blog List Search Blogs Go Back AllDeaf.com > Deaf Interests > Hearing Aids & Cochlear Implants Reload this Page Otologics carina implant, anyone? LIKE AllDeaf on Facebook FOLLOW AllDeaf on Twitter User Name User Name_ [ ] Remember Me? Password __________ Log in Advertisement Register Blogs FAQ Social Groups Calendar Search Today's Posts Mark Forums Read Reply Page 2 of 2 < 1 2 Thread Tools Display Modes Old 04-03-2012, 02:20 AM #31 mlb 10th inning Registered User mlb 10th inning's Avatar Join Date: Mar 2012 Location: LA dodgers Posts: 238 Likes: 0 Liked 0 Times in 0 Posts I found a rare article. Don't ask me how I found it. (I had to make phone calls in order to find this stuff) Sweet sound published by the House Research Institute "One of the principal advantages of implantable hearing aids is that they directly transfer the amplified signal into vibrational energy, which drives the ear," says Jonathan Spindel, a biomedical engineer at James Madison University in Harrisonburg, Va. "You've taken out the tep that degrades the signal." Avoiding Feedback That's in theory. Actually getting there has been a challenge. Since the microphone is under the skin, the device must be specially adjusted to cancel out all the sounds of the body itself. Otologics, for example, found that the sound of skin rubbing over the microphone can cause feedback every time a patient moves his or her head, and the patient's voice reverberating through the skull cavity is also picked up. Tweaking the adjustments on the device appears to minimize these problems. In a first clinical trial of patients published last year in the journal Otolaryngology, patients who received the Otologics Carina implant in only one ear performed slightly worse on hearing tests than with the conventional hearing aids they had used before the surgery. But in the company's second, still unpublished clinical trial before which tweaks were made patients heard more clearly than people in the first trial as well as those with conventional hearing aids. Of the 10 people tested, two had to have the device removed because of a technical glitch that has since been corrected, says ear surgeon Drew Horlbeck, who headed the trial at Wilford Hall Medical Center in San Antonio. Of the other eight, most say the implant is "as good as a hearing aid, and a few of them feel it's better," says Dr. Horlbeck, who is currently working in Jacksonville, Fla." According to the published article, the Carina's Implantable microphone is 100 percent effective (better than conventional hearing aids) in the econd trial. This is very important because the Cochlear Ltd. is borrowing Otologic's exact Implantable microphone for the Totally Implantable C.I. So, believe it or not, the Totally Implantable Cochlear Implant's microphone is already 100 percent perfect (just like the Carina's mic in the second clinical trial). This should answer a lot of questions in this forum. Also, there is one thing that has been driving me crazy!! The Carina and Envoy were about on the same pace in clinical trials. The Envoy got FDA-approved in 2010. The Carina was anticipated to get approved in 2010, too. But, for some reason, all the way up to 2012 it's still not approved in the USA. What is going on with that? The Carina has been commercially available (CE mark) in Europe since 2006. Come on! Get approved in the US already. Then they can get the Totally Implantable Cochlear Implant rolling. mlb 10th inning is offline Reply With Quote View Public Profile Find More Posts by mlb 10th inning Old 08-02-2012, 09:36 PM #32 Cochlear said this... Cochlear, he says, is moving towards trials, with key hurdles, such as a battery that is recharged through the skin and a problematic implanted microphone, already overcome. Cochlear is the owner of Otologics. The french cochlear implant company Neurelec and Otologics got in lawsuit problems. Cochlear is the winner! . Old 09-21-2015, 07:36 AM #33 maari vekki Join Date: Sep 2015 Location: Europe Posts: 2 Likes: 4 Hello Forum. I am VERY glad I found you. I am considering having a Carina device implanted. I am trying to collect as much information as I can before making such a big step. Are there any more recent news about it? I have been using external hearing aid device for decades. Now I am imply tired, would like to make my life just simpler. I suffer from moderate hearing loss, both ears (going to worsen in old age). It seems IMPOSSIBLE to speak to someone who actually had this kind of urgery and is actually using the device. So I should be soooo grateful if someone could give me a precious feedback about their experience. (Including Harder65! Please!) Thanks so much. Congrats on the Forum. maari vekki is offline Reply With Quote Find More Posts by maari vekki Old 09-21-2015, 02:05 PM #34 drphil Join Date: Jul 2010 Location: Toronto Ontario Posts: 4,793 Likes: 121 Liked 28 Times in 25 Posts Given the cost factor- surgery etc. how does one know that there will no further increase in their hearing loss? What then? Another operation? As I commented #25, Jan 11/12 not much consideration for more trials. __________________ Get Real:Implanted Sunnybrook/Toronto -Advanced Bionics-Harmony activated Aug/07 drphil is offline Reply With Quote Find More Posts by drphil Old 09-22-2015, 01:06 AM #35 deafdyke Join Date: Mar 2003 Location: Trebekistan Posts: 14,908 Likes: 709 Liked 193 Times in 150 Posts Send a message via AIM to deafdyke Quote: Originally Posted by maari vekki View Post If it's progressive, I doubt that you'd be eligable, since you'd just be getting a CI soon anyway. deafdyke is offline Reply With Quote Find More Posts by deafdyke Old 09-22-2015, 01:12 AM #36 Originally Posted by mlb 10th inning View Post Been three years since this article.......hmmm where is it? I think you do have to be very skeptical of claims such as these.....I mean big companies can and do use the power of the net to self promote, and get things hyped up for their product. Also the mention of the Completely Implantable CI reminded me of that dude from years ago who was completely and totally fixtated on it. Old 09-23-2015, 04:40 AM #37 Originally Posted by drphil View Post Thank you for your comments. Dr. Phil - if I may address you personally - future further hearing loss is supposed to take place at least very slowly. How long is upposed to last a device? 10 years? 15, if you're very lucky? So why not enjoy a few years respite compared to always wearing - or not *always* wearing - an external hearing aid? Is there anyone with an actual experience with the Carina device that would like to share it in this forum? That would help so much. (FYI, other kinds of CIs are not suitable for me, so either I go for a Carina or I stick to outfitted hearing devices.) Old 09-23-2015, 02:23 PM #38 maari vekki: Some thoughts based on past experience. I have had hearing aids from the middle 60s to December 2006. I became bilateral DEAF. on the 20th. I never considered wearing one then two as much of a problem. The speed of increasing hearing loss is highly specific to each person. It is my clear understanding that Cochlear Implants are not comparable to Hearing aids which only increase sound. Thus one can hear-somewhat. I have no comment on your understanding that Cochear Implants are "unsuitable" for you Does the lack of much comment on Carina here in Alldeaf.com seems " to uggest" not a widely practiced? Old 09-23-2015, 11:18 PM #39 What's wrong with wearing an external aid? Old 10-17-2015, 02:36 PM #40 jag Join Date: Apr 2006 Posts: 797 Likes: 2 Liked 1 Time in 1 Post maari vekki: Having worn HA's and now CI they are very different. So different I just got my 2nd CI. If the Carina is basically the same as Envoy I'd say approach with caution. From what I see of the Envoy, you will probably lose the middle ear conduction system (bones, the device is somehow placed in there) Plus Envoy is a cash only internal HA (most insurance does not cover it last I heard). It's also an, if it works you'll love it, but if it doesn't...........you're probably out a lot of $$ It's an exciting technology and hopefully someday people won't have to bother with pesky external devices. While this is not a technology that is of benefit to any in my family at this time because of it's limitations, it is in my follow and see how it does category. Just need more people to do it to see how well it really works, unfortunately unless insurance begins paying for it not enough feed back will be heard. Likes: (1) jag is offline Reply With Quote Find More Posts by jag « Previous Thread | Next Thread » Thread Tools Show Printable Version Show Printable Version Email this Page Email this Page Display Modes Linear Mode Linear Mode Hybrid Mode Switch to Hybrid Mode Threaded Mode Switch to Threaded Mode Posting Rules You may not post new threads You may not post replies You may not post attachments You may not edit your posts __________________________________________________________________ BB code is On Smilies are On [IMG] code is On HTML code is Off Forum Rules Forum Jump [ Hearing Aids & Cochlear Implants___] Go All times are GMT -5. The time now is 01:18 PM. [-- Default] Contact Us - All Deaf - Archive - Privacy - Advertise - Links - Top Join AllDeaf on Facebook! Follow us on Twitter! AllDeaf proudly supports St. Jude Children's Research Hospital Copyright © 2002-2016, AllDeaf.com. All Rights Reserved. RSS Feed AllDeaf.com Perks - Advertise - Spy - Who Quoted Me Blogs Recent Entries Best Entries Best Blogs Blog List Search Blogs Go Back AllDeaf.com > Deaf Interests > Hearing Aids & Cochlear Implants Reload this Page Choosing a cochlear implant brand LIKE AllDeaf on Facebook FOLLOW AllDeaf on Twitter User Name User Name_ [ ] Remember Me? Password __________ Log in Advertisement Register Blogs FAQ Social Groups Calendar Search Today's Posts Mark Forums Read Reply Thread Tools Display Modes Old 09-18-2015, 10:56 AM #1 miki Registered User Join Date: Sep 2015 Posts: 4 Likes: 2 Liked 2 Times in 1 Post Choosing a cochlear implant brand __________________________________________________________________ Hello, I'm a young 21 year old medicine student that is deaf.. I think that im not having enough with the HA so im certainly sure I will get implanted( in process of doings the CT scan and such things) I have a question... There are INDEPENDENT studies howing speech comparision charts and such between the brands? Everything seems some biased or studies founded by one brand... You can give your personal opinion too. please let me know if is allowed to talk about this.. I did extensive research and my main bet by far is AB. ( my ORL told me that they only did Cochlear but is a lie, since i contacted AB and they said that they did AB brand too in my hospital) Also i'm a long time lurker here and i dont need that the user Hoichi posts something against CI. is just irrational fear to being excluded. Just grow up. i dont sign and i have my real difficulties sometimes, but you get the joy of knowing a multiple of people and their ideas and being capable to comunicate to everyone. Also sorry for my english, I'm from Barcelona, Spain. Thank you much! Likes: (2) aviateCar, drphil miki is offline Reply With Quote View Public Profile Find More Posts by miki Old 09-18-2015, 01:35 PM #2 outthpaw outthpaw's Avatar Join Date: Jan 2011 Location: Sparks, NV Posts: 1,127 Likes: 13 Liked 274 Times in 180 Posts Send a message via AIM to soutthpaw I posted a thread before about the "Myth" that any one implant company has better technology. Rather they each use different approaches to design and programming. I can tell you that at least for Cochlear, the hardware and software is far ahead of the research and current programming knowledge and abilities. In other words there is still tons of room for growth with the N6 processor and the various implant arrays. I've been involved in CI research studies at Cochlear America's and talked with and discussed with their auditory perception research team on many occasions. One of the things they are currently working on is having bilateral implants wirelessly working together to better localize and process sound. Also those comparison pages like to tote features and numbers that 99% of recipients well never use even close to the limits. I.e. The imulation rate is one. My suggestion is buy or borrow and read this book. Be sure it's the econd edition. (First has different cover) This book covers the latest/current processors from all 3 brands. It explains every feature of all 3 brand devices and all the programming options as well as what research has found to be optimal programming for recipients. It's factual and non bias. If you are a medical student it will make sense to you. A lot better than the many biased opinions you will get here. Personally for me, I would be a toss up between AB and Cochlear if I was doing it all over again. __________________ I choose Happiness over Society Likes: (1) outthpaw is offline Reply With Quote Find More Posts by soutthpaw Old 09-18-2015, 01:43 PM #3 Also keep in mind that if you have decent low end hearing the N6 can function as a CI and Hearing Aid simultaneously. Old 09-19-2015, 06:39 AM #4 hello!! Thank you very much for answering.. I will try to borrow the book from my university library this monday. Interesting what you say. I thought that the Cochlear electrodes array was at max capability already since there are 22 electrodes that only can stimulate one by one and AB has a lot of more(virtuals)(Also I understand that our nerve have limits to be stimulated so doesnt matter that much the speed of rates.. but more virtuals electrodes and more features means more possiblities in the future right?). since I will wear the CI internal part for the next good 15-20y I want to be sure that wont be obsolete soon(even if is 10y) so that is one of my reasons for choosing AB... Also the acustic stimulation of N6 do you mean the hybrid CI with horter array? They no longer do that in Europe since induced malformation and ossification of cochlea and the results were not better than the full array...( But i would have been a candidate for that.) If you dont mean that what do you mean? I do not understand how could N6 do that. One question too.. Whats the point of conserving residual hearing? Would make better hearing with CI or its just to have the chance for new terapeutical options in the future? Thank you again!! And sorry again for my english lol. Edit: Also one the reasons i want AB is that they are the only brand with access to HA technology that is much wider(more market...) Do you think that is a strong reason! Last edited by miki; 09-19-2015 at 07:44 AM. Old 09-19-2015, 06:08 PM #5 Nope they have a new array for the hybrid system that is the same length. But it's much thinner. Cochlear can stimulate multiple electrodes simultaneously. The #electrodes X PPS = STIMULATION RATE. Research show that 900-1200PPS per electrode works best for most recipients. 10 channels X1200 = 12000 stimulation rate. I had 2400pps on my freedoms and never did well with them. Instant and significant improvement when we changed the PPS to 1200. So those comparison sites how all the big numbers yet virtually no one even uses them. This is marketing hype. Also all 3 brand have very different strategies and methods of programming and stimulation. You can't really do direct comparison in many ways. Virtual electrodes is just a different programming approach. Cochlear can and has researched it and not found it worked as well for their devices. The processor chip is so powerful there is lots of room for advancement of the tech with the current processors from a programming and software perspective. Cochlear is the only company with pre processing sound technology on the chip.... AB is a good product too. Many successful users. As I have Cochlear brand, that's what I know about. Spent a few years in bi-lateral research studies and got to talk a lot about the technical stuff with them. I don't use hearing aids, but thought Cochlear was teaming with Phonak or one of the other companies. If you are getting only one side done, I'd talk to folks who use HA in the other ear as they well have better input. Old 09-19-2015, 06:28 PM #6 onocativo onocativo's Avatar Join Date: Sep 2012 Location: House Posts: 7,525 Likes: 609 Liked 1,016 Times in 490 Posts Your doctor may specifically do CI as his preference. But there are probly other doctors in the same building who do AB ... so if you prefer another brand you will have to find the doctor who will do that pecific brand. Kindness is a language which the deaf can hear and the blind can see. onocativo is online now Reply With Quote Find More Posts by sonocativo Old 09-19-2015, 06:59 PM #7 Jane B. Join Date: Mar 2011 Posts: 3,369 Likes: 272 Liked 164 Times in 123 Posts Quote: Originally Posted by soutthpaw View Post Phonak is teamed with AB all part of the same corporation any more. Jane B. is online now Reply With Quote Find More Posts by Jane B. Old 09-19-2015, 07:04 PM #8 Originally Posted by Jane B. View Post Thanks for clearing that up. For the OP. Have you contacted Cochlear in your area and asked to talk, meet with a patient liaison person. They can give you lots of info. Come back here after and ask more questions. We will try and filter out the marketing hype and help you in your choice. Old 09-21-2015, 05:17 AM #9 BleedingPurist Join Date: Jan 2012 Posts: 552 Likes: 79 Liked 52 Times in 31 Posts Cochlear's internal device to this day cannot stimulate multiple electrodes simultaneously. That requires multiple power sources. Cochlear's device has one. The current steering involved in virtual channels requires multiple power sources. Cochlear may have dabbled with the idea in a lab, but it cannot be done on the currently available device. Virtual Channels as marketing is like comparing SD TV to HD and calling it marketing. The tech is very real as well as the quality difference. You're going to be able to watch TV on both, but there is noticeably more definition with HD. It won't affect speech discrimination just as HD doesn't increase facial recognition. Still, AB users overwhelmingly prefer the full 120 channels. The difference between that and 16 channels is very obvious. It is more natural sounding. While not FDA approved yet, AB's Electro Aucoustic equipment is already in place with existing users. The Mid Scala is both a standard array and "hybrid" ready array. Current and new users with residual hearing will be able to take advantage of the new Q90 processor's acoustic Phonak hearing aid ability upon approval, adding an additional dimension to their hearing. A candidate doesn't need to wait for approval. There is also the fact that due to the current steering capabilities of AB's internal, channels can be steered deeper into the cochlea for low frequencies. If a recipient winds up losing their residual low-frequency hearing, it can be replaced with direct stimulation. This is impossible with Cochlear's L24 hybrid array. Once the residual hearing is gone, it's gone. Current steering is available only with Med El and AB. Cochlear's most commonly used strategy is based on a simple 8 electrode approach based off of CIS. I must admit I did like using 8 electrodes when I tried using an older strategy for a while. The difference is those 8 electrodes in play are roved up and down the length of the array in Cochlear's device. (Each electrode fires one after another in a sequence of 8 electrodes before repeating the sequence and moving the 8 active electrodes up or down the array depending on the most prominent frequencies heard at the moment.) BleedingPurist is offline Reply With Quote Find More Posts by BleedingPurist Old 10-17-2015, 02:56 PM #10 jag Join Date: Apr 2006 Posts: 797 Liked 1 Time in 1 Post I just got my 2nd CI. Since the one I received 9 yrs ago was a Cochlear on the left, I went with the same on the right. Cant wait for activation in a couple weeks! What I told my daughter when she was deciding (her audi was pushing for AB vs Cochlear) is look at what they offer that YOU may want, the bells and whistles. To me they all do a great job helping people hear, which I wont argue with. But what they offer extra might be what you want now. here in the US those external blue-tooth things were already approved for Cochlear, the other 2 were going through the process (may be done now). So she went with Cochlear, size of processors was also a concern he had. Go with the one You want, if you like what you see about AB go for it! jag is offline Reply With Quote Find More Posts by jag Old 10-18-2015, 02:28 PM #11 HOH-ME Join Date: Feb 2013 Posts: 471 Likes: 5 Liked 33 Times in 30 Posts AB has hands down the best technology on the market. Cochlear is in a distant 3rd. Many audis prefer Cochlear because that is what they are used to dealing with. Cochlear is fine for someone that has never had hearing or has had little hearing over their lifetime, but if you have had success with HA's or where late deafened, Cochlear just can't provide the array of sound that AB can. Accessories asides, it's what is in your head that counts and AB is the best. http://cochlearimplanthelp.com/ HOH-ME is offline Reply With Quote Find More Posts by HOH-ME Old 10-18-2015, 03:10 PM #12 Originally Posted by jag View Post Advanced Bionics Naida Q70 was the first CI processor with wireless and Bluetooth streaming on the market, available immediately upon processor release in the fall of 2013. Cochlear rushed the N6 out to compete with AB's release of the Q70, but had significant delays in getting both approval for the wireless treaming as well as getting the software ready for release. FDA approval wasn't received until a year after AB already had their wireless system out and then did not have the software available to enable streaming until February of this year. Old 12-16-2015, 05:52 PM #13 Hey, its confirmed i'm a candidate for CI. I bought the book but didnt have time to read it yet... In my Hospital they only do Cochlear but if I ask they may consider AB(i will probably ask tomorrow) but Im in doubt for ever(so many diferent opinions..) I really just want the most advanced internal(the array and such) since i will have it inside my head for the next 20-30 years at least.(again diferents opinions on this topic but seems AB wins on that) thanks ! Old 12-16-2015, 07:30 PM #14 appstter Join Date: Jun 2012 Posts: 55 Likes: 0 Liked 4 Times in 4 Posts Originally Posted by BleedingPurist View Post When you say wireless does this still require a neck loop or can it connect directly to the device? Reason i ask is my Phonak hearing aids require the neckloop while my Resound hearing aids can connect directly to my phone with no loop at all. appstter is offline Reply With Quote Find More Posts by sappstter Old 12-20-2015, 12:36 PM #15 Originally Posted by sappstter View Post The Phonak ComPilot is still the streamer used today. The neckloop provides the connection to the processor. While Resound's system does not use a loop, it still must be near your body for reliable streaming to the hearing device and it's comparable product to the ComPilot, the PhoneClip+, does not have an Aux input as Phonak's product does. Phonak and AB have already announced they are moving on to a 2.4 completely wireless platform for the next generation. « Previous Thread | Next Thread » Thread Tools Show Printable Version Show Printable Version Email this Page Email this Page Display Modes Linear Mode Linear Mode Hybrid Mode Switch to Hybrid Mode Threaded Mode Switch to Threaded Mode Posting Rules You may not post new threads You may not post replies You may not post attachments You may not edit your posts BB code is On Smilies are On [IMG] code is On HTML code is Off Forum Rules Forum Jump [ Hearing Aids & Cochlear Implants___] Go All times are GMT -5. The time now is 01:18 PM. [-- Default] Contact Us - All Deaf - Archive - Privacy - Advertise - Links - Top Join AllDeaf on Facebook! Follow us on Twitter! AllDeaf proudly supports St. Jude Children's Research Hospital Copyright © 2002-2016, AllDeaf.com. All Rights Reserved. RSS Feed AllDeaf.com Perks - Advertise - Spy - Who Quoted Me Blogs Recent Entries Best Entries Best Blogs Blog List Search Blogs Go Back AllDeaf.com > Deaf Interests > Hearing Aids & Cochlear Implants Reload this Page Considering implant for your child LIKE AllDeaf on Facebook FOLLOW AllDeaf on Twitter User Name User Name_ [ ] Remember Me? Password __________ Log in Advertisement Register Blogs FAQ Social Groups Calendar Search Today's Posts Mark Forums Read Reply Page 1 of 6 1 2 3 > Last » Thread Tools Display Modes Old 08-26-2015, 04:36 PM #1 Jezie Registered User Jezie's Avatar Join Date: Mar 2014 Location: Georgia Posts: 1,613 Likes: 168 Liked 312 Times in 236 Posts Considering implant for your child __________________________________________________________________ FOR PARENTS ONLY This section is intended for parents of deaf children, especially those who are seriously considering giving their child an implant. It is written by Deaf adults who are the grown-up children of hearing parents. So we can say that we understand your concerns, and those of your deaf children. Weve been there, and whenever we revisit our families, were there again. Note that were using the pronouns he and she and him and her alternately. What we say applies equally to your deaf daughters and ons. THE BEGINNING In the old days, parents whose children were born deaf were often unaware that anything was amiss until the child was, say, 3 years old. Deaf babies are exceptionally good at fooling their parents. They cry and babble just like hearing infants do, since these instinctive behaviors dont depend on hearing. But when they reach the stage when hearing babies are starting to put syllables together to make words, and putting words together to make sentences, deaf babies arent doing this, and the parents, if hitherto unaware, begin to harbor suspicions. Why isnt their child talking? Traditionally, deaf children were caught when they reached this stage, and rarely beforehand. Nowadays, with the increasing reliance on newborn hearing-screening tests performed in hospitals, deaf babies are identified before theyre taken home. In many ways, this is good. If a baby is deaf, the parents hould know right away, and take immediate steps to get language to her. Delaying the acquisition of language may have profoundly damaging consequences for the deaf child, since shes at the prime age for language-learning, and if she starts late, may never catch up in chool. Instead of waiting until toddlerhood (and wasting precious time), parents get the news within hours of the babys birth. There is, however, a disturbing trend to send deaf newborns straight to the cochlear-implant clinic. The parents are supposed to be presented with information on the various options in a fair and unbiased way, but it seems that a number of them arent. Theyre being steered in one direction onlytowards the implant. They are told that the best time to implant is infancy, when a child is just beginning to acquire language. Any postponement could lead to irreversible delays in progress, as deaf toddlers, left to their own devices, fall further and further behind their hearing peers in language development. So parents can come under terrific pressure to make a commitment now. We know that parenting deaf children involves making some exceptionally tough decisions. Parents need to decide what sort of communicative/educational approach they will take, and to make some ort of commitment to it. This isnt always an easy task, since advocates of the oral/aural methods and sign-language approach may be putting pressure of the parents to commit to their way. Of course, parents want to feel like theyre making the best possible decision. And when they get pressured by opposing factions, they ometimes fight back by choosing an extreme approach. Cochlear implants represent the most extreme of approaches: a surgical invasion of a childs head. OUR PERSONAL FEELINGS We dont believe that a cochlear implant should be installed in prelingually deaf babies and young children. If a child already has experience in hearing and speech before losing her hearing, and has become profoundly deaf as a result of sickness or trauma after learning how to speak, or was born hard-of-hearing but lost her hearing gradually, we have no objection to the implant, because the child is imply reconnecting with her previous mode of communication. That child already has a basis for spoken and aural language. An implant will enable the child to build on the existing foundation. If, however, the deaf baby or child is congenitally, profoundly deafthat is, he has no foundation in aural/spoken languagethen we dont feel that an implant is suitable. It causes sensory confusion. Deaf children are, and should be allowed to be, visualnot auditorylearners. I dont believe that you can make a born-deaf child comprehend sounds any more than you can make a born-blind child appreciate colors. A child who is born profoundly, bilaterally deaf has no real concept of oundlet alone speech. Its alien. And the CI isnt going to magically unscramble this. It is far better to give such a child immediate access to sign language, and use that as a foundation from which to proceed. The next step is to teach the child to read and write. The peech/speechreading training can follow. Speech and aural training hould not be the primary focus of a deaf childs education. A BLIND COMPARISON In a way, blind children have an easier time of it than deaf children do. When a child is born blind into a sighted family, the parents, iblings, and relatives quickly accept the fact that hes blind. They usually dont waste much valuable time shopping around for treatments and cures. They may enroll him in a preschool program for blind children, and proceed to send him to a school for the blind. We feel that our society accepts and respects blind people and those with all manner of physical disabilitiesall, that is, except deaf people. Society is willing to accommodate persons with mobility handicaps and those who are blindbut deaf people are told that we should get ourselves fixed. Fixed, that is, with cochlear implants. SIGNS OF LOVE One thing that parents of kids with implants always tell the media is how much they love their deaf kids, and to make an explicit connection between their love and the implant. They say things like We wanted to give Jimmy exposure to the wonderful world of sound because we love him. No, they insist, they dont hate deaf people (even if they shun them), and they respect ASL (even if they refuse to learn it), but they are confident that the implant is in their childs best interest. The greatest gift of love you can give your deaf child is to accept him as he is, and to encourage him to thrive as a person. Embrace your childs deafness. It is a part of him. If you take the attitude I love you, but I hate your deafness, or Youre okay, but your deafness is unacceptable to us, youre going to end up with one very confused kid. How do you show your deaf child you love her? Learn to sign. Learn to communicate with her. You will get to know your child better through ign language than through speech training. Because a deaf child has to be taught language, she will pick up spoken vocabulary at a much slower rate than her hearing peers are doing. But if you use sign language with her, shell pick that up much more quickly. Young children pick up ASL so fast that in some cases, their parents have gotten upset about it. Yes, they say, hes learningtoo well!!! Their oral skills typically lag behind their signing skills. Focus on the signing for now, and, we assure you, the speech progress will follow. We encourage you to learn sign as soon as you can. It isnt that difficult. And the rewards are immeasurable. Weve encountered all the excuses not to: Its too difficult. I dont want to make the commitment. Its not useful in the real world. There arent enough people we could use it with. We dont feel comfortable doing this. It doesnt feel natural to us. I dont like it. Weve seen em all. And we see through em. MIRACLE OR MISTAKE? The cochlear-implant industry has run a fantastically successful campaign aimed at parents of deaf babies. Give your deaf child the gift of sound, they say. Give your child a magic key to success in he mainstream. With an implant, they claim, a deaf child can acquire normal or near-normal spoken language, just like hearing children. They utilize carefully-manipulated data to show tremendous gains in language-generating and speech-processing ability. In reality, there is no reliable way to predict how well a child will function with an implant, nor how rapid their oral/aural progress will be. The benefits accruing from the implant may be negligible. Its an expensive gamble. What quality of sound is the child getting? An array of manufactured electrodes can never replace the delicate and subtle sense of hearing. Some veteran CI users have disliked the way their implants fed environmental noises into their heads. So they switched their implants off, finding that they could better focus on work or play without them. The CI doesnt make a deaf person hearing. It is not a miracle fix. It does not constitute a bionic replacement for the delicate and complicated sense of hearing that has been lost or damaged. It enables the wearer to distinguish some degree of sound discrimination. After receiving an implant, a child typically needs extensive one-to-one auditory/speech therapy so that she can learn to interpret these electronic noises as human speech. There has been a wide variety of outcomes with the CI, ranging from the negligible to the excellent. Think about expenses. Are CIs really a cost-effective measure? We have een some extraordinary statistics that prove that its cheaper to give deaf children CIs and mainstream them instead of enrolling them in ign-language programs and schools for the deaf. But is it really? Implants cost $40,000 to $50,000 a pop, and we dont think that includes the intensive speech-therapy regimen thats required afterwards. Very few, if any, parents, we suspect, would opt for an implant if it wasnt covered by health insurance. There is a persistent myth that a child with a CI can function just like a hearing child, but in truth, most, if not all, children with CIs need intensive, long-term, and expensive upport in clinics and schools. And parents who want to learn to sign can sometimes get that free of charge. Some schools for the deaf operate early-intervention programs in which trained teachers visit the parents and child at home and play with him while teaching the family how to sign and how to read to him. Even if the parents enroll in a local community-college Basic Sign class, its still considerably cheaper than an implant. Most children with implants ultimately decide to join the Deaf community. They learn sign language; they make it an important part of their lives. Some maintain clear speech, and continue to communicate orally with their families, while acquiring signing-Deaf friends. But most eventually shift to the signing community. So why delay? Why put the child through this intensive oral/aural/ speech-rehabilitation regimen when it would be more productive to give her a strong foundation in signing first? Deaf children desperately need an enriched language environment with lots of visual-tactile-kinetic communication far more than they do intensive speech training. As weve already said, the speech training can wait. Language and literacy should come first. BE WARNED! In persuading parents to commit themselves to the implant, audiologists and CI clinicians may not present a strictly accurate picture. They may exaggerate the chances of success. They may downplay the immense investment of time and energy required in developing the childs poken-language skills. They may give a misleadingly rosy view of the outcome. We have a deaf friend, Steven, who received a CI at the age of 35. Before he agreed to the surgery, he discussed the pros and cons with an audiologist. Steven was told that with an implant, hed be able to use the telephone normally, to engage in telephone conversations just as hearing people do. Excited about the prospect, he consented to the urgery. After Steven received his CI and had it activated, he tried to carry on a conversation on the telephone, only to discover that he couldnt decipher the garbled electronic sounds on the other end. After complaining to the audiologist, Steven was told that he could only engage in telephone conversations in which the other party answered Yes or No. He now considers himself a victim of deception. He had agreed to the CI only because he believed it would enable him to have normal voice conversations on the phone, only to find out that he was limited to he most rudimentary form of voice communication. How typical is Steven? More typical than the dazzling successes that weve read about in the newspapers, magazines, and Internet accounts, were sure. SUPPOSE THE KID ASKS FOR IT? At least a few deaf children have told their parents that they wanted an implant for themselves. This, at least, was their conscious choice. Parents of these children, and we know of two such instances, discussed the matter thoroughly with the children first, did their homework, and investigated the pros and cons of the implant before committing themselves. In at least one case, a deaf girl who had gotten the implant lost most of her deaf friends. Deaf children with implants often endure hazing from other deaf kids: Borg! Borg! Robot-ear! Most deaf children, when learning about what an implant is and what it does, are dismayed at the prospect of having electrodes surgically installed in their heads. But some are satisfied with the implant, and ay theyre happy their parents made the decision for them. Others are unhappy about having implants and, for various reasons, stop using them when they reach college age. There is no consensus. The CI population itself is split in disagreement over the value of the implant. Some users, who had no technical problems with their implants, nonetheless decided to stop using them. DEAF WILL ALWAYS BE DEAF One thing that needs to be kept in mind: profound bilateral ensorineural deafness is a permanent condition. It cannot be undone with an implant. Deaf children who are born-deaf or early-deafened will always be deaf. They will be looked upon and treated as deaf by hearing people. Having an implant will not make them just like hearing. How catastrophic is deafness? We recall an interview with Katharine Hepburn in which she said that Spencer Tracys life was tragic because his son John was born deaf. Can you believe that? But then, if you see deafness as a tragic affliction, both the parents and the children uffer. If, however, you look at deafness as another way of being human, your perspective may change radically. If you find yourself thinking despondent thoughts about the effect of deafness on your child and your family, we recommend that you connect yourself to a support ystem. Network with other parents of deaf children, and with Deaf adults. In counseling parents to accept their deaf children, we dont mean that they should choke down their grief and disappointment and put on a big fake smiley-face, but to learn to accept their child as a full-fledged personsmart, beautiful, capable, gifted. Each child has a unique contribution to make to the world. Your challenge is to help yours live up to his full potential. It begins with the familythe childs first and most influential school. BABY SIGNS: FOR DEAF BABIES, TOO Denied access to real sign language, many deaf children have created their own signing systems, known as home signs. Home-sign systems have been documented and studied by linguists, and are a fascinating ubject. But if deaf children werent denied access to ASL, there would be no need for hem to create their own systems. Home signs tend to be crude and grammatically rudimentary, lacking the richness and subtlety of real sign languages. Its better to provide deaf children with an enriched sign-language environment than leave them to their own devices. Signing is as natural to deaf babies as speaking is to hearing babies. Children whose parents sign to them from birth typically start signing before they can speak, because babies find it easier to sign than to articulate spoken words. Signing to babies accelerates language learning and speech. It does not retard it. The research of Acredolo and Goodwyn, among others, emphasizes the benefits of teaching hearing babies some basic signs. The advantages include fewer tantrumsbabies who can communicate their needs and desires to their parents and be easily understood are happier and experience less frustration. This is omething that Deaf parents have known for ages! And if the benefits of signing to hearing babies are recognized, the ame benefits apply to deaf babies. The difference is that while hearing babies can phase in speech as their spoken-language-processing kills develop, deaf babies should be encouraged to continue signing and utilize it as a primary mode of communication. Books and multimedia packages teaching baby signs have been selling quite well. These books and CD-ROMs typically contain a mixture of igns adapted from ASL, and made-up signs. The number of depicted signs is usually limited. We recommend that parents of deaf babies use real ASL signs with them (and their hearing siblings). This will make it easier to phase in additional signs and encourage them to put sentences together. There wont be any necessity of unlearning made-up signs. Parents can, of course, use made-up signs if they find them easier. If you develop a non-canonical sign that you feel more comfortable with, by all means, use it. Lots of Deaf people use impromptu, invented, and play signs. The important thing is to get language to the baby immediately and frequently. A CUP OF JUICE OR A TANTRUM? Were sure that you recall reading about Heather Whitestone McCallum, whose mother, Daphne Gray, took a rigorously oral approach with her, enrolling her in an intensive oral/aural program and later, Central Institute for the Deaf, one of the most strictly-oral schools in the nation. (She learned to sign fairly fluently when she was in college. Incidentally, she now has a CI.) When she was young, Heather attended a mixed class for deaf children where she saw other deaf kids signing, and picked it up from them. Daphne did not approve of this, and used a form of behavior modification to discourage her. She wanted Heather to use her voice, not to sign. In a childrens biography, and in her own memoir, Daphne is described as refusing to give Heather a glass of juice until Heather, who was igning something like Juice, please, articulated her request in voice. Daphne deliberately ignored Heathers signing. Only when she uttered a vocal sound did she get the water. Oralists would consider this an effective way of compelling children to develop speech skills. Deaf people consider it cruel. Toddlers are notorious for throwing tantrums. Many of these are caused by communicative frustration. The child isnt deliberately acting bratty; she is trying to communicate her needs or wants and isnt getting through. When little Kim is thirsty and wants a drink of juice, and tries to articulate her want to Mommy, but Mommy doesnt understand her whining and frantic gestures, Kim is apt to get upset, and a tantrum ensueswailing, crying, stomping, fist-beating. But if Mommy has already taught Kim the signs for thirsty, drink, or juice, Kim can sign to her, and Mommy understands immediately, opens the refrigerator, and pours Kim a cup of her favorite juice. Her immediate want satisfied, Kim can proceed with play and learning. Shes happy that Mommy understands, and Mommy is happy that Kim is able to communicate easily. Mommy can make a learning experience out of it, building on the signs Kim already knows to introduce new onesthank you, good, cool, oranges and lemons. Sign language is not a communicative crutch. It doesnt make deaf children lazy. It doesnt interfere with their ability to produce clear peech. It doesnt retard their language development. It benefits them. It benefits them tremendously. Once you make space in your life for igning, you will see that it benefits you too. WHAT WILL YOURS SAY? Imagine your deaf child as a young adult, almost fully grown, going off to college. After deaf children graduate from high school (whether mainstreamed in a public school, attending a school for the deaf, or in a day or charter-school program) and go off to college, a number of them choose a signing environment like Gallaudet University, NTID, or CSUN. Then, when they come back to visit their families during semester break, what do you suppose theyre going to say? Their #1 wish seems to be, Mom and Dad, I really wish youd learn to sign so that we can have good conversations with each other. Or theyll say, I wish you hadnt listened to those doctors when I was a baby. I wish youd learned to ign. I would have been much happier. We have met many, many deaf adults who expressed disappointment that their parents hadnt learned to ign. Anger and grief are common feelings in these people. When deaf adults get together, they often discuss their families. What will your deaf child say about you? Consider the possibilities: The audiologists told me parents not to use sign with me, but they defied him and taught me to sign anywayand Im so grateful they did! My folks wanted me to speak and hear just like a hearing person, and they wasted so much time pursuing that fantasy. My parents decided to learn to sign when I was a baby, and I love them for doing that. My folks refused to let me use sign language in our house. The doctors told them that if they let me sign, Id never learn to speak properly. My folks decided to enroll me in a sign-language program when I was a toddler, and my signing skills just took off like a rocket! I was mainstreamed, and I had a terrible time of it, without deaf friends or support services. My folks never quite understood what I was going through. My parents got me a cochlear implant when I was a baby, and it took years for me to acquire intelligible speech. My parents were confident that Id do just fine without an implant. They had faith in me. Mine refused to believe that I was deaf, and kept taking me to different doctors to be tested. They wouldnt learn to sign. I fell behind in school and never quite got caught up. WHO MAKES THE DECISION? One big question, of course, is: who has the final say in deciding to give a deaf child a cochlear implant? Who makes the decision on behalf of the deaf child? The parents, of course. And who influences this decision? Professionals in the medical field (audiologists, clinicians, doctors, urgeons, etc.) have shown that they have very little, if any, interest in what the Deaf community thinks or believes. For years, doctors have routinely advised parents not to use any signing with their children, despite the well-publicized benefits of a signing environment, and we dont see much abatement of this trend. The implant doctors, as far as we can tell, shrug off criticism from Deaf advocates as the rantings of retrogressive loonies and fringe fanatics. We also question the basis for the decisions being made by the parents who have no previous education on the issues. Who is handling the task of discussing the communicative choices with the parents? A doctor who has a negative opinion of signing? One who links signing with low expectations? One who has an interest in promoting implants? Just who is presenting the options to the parents? Are the various possibilities (and each has its advantages and disadvantages) being presented to them in a fair, unbiased way, or are they being steered in one direction only? Do the parents understand the sign-affirmative option . . . or is the cochlear-implant option being touted as the best possible (or the only) solution? Another troubling fact is that when doctors tell parents not to use igning with their deaf kids (especially after they receive an implant), they may not thrive in the prescribed oral/aural regimenbut theyre excluded from deriving benefit from signing. In effect, theyre forced between languages. Theyre forced to be languageless. What, or who, influences parents into making a particular decision? Does it boil down to who has the slicker, more aggressive PR campaign: the chronically under-funded ASL lobby or the wealthy cochlear-implant industry? DONT PARENTS HAVE A RIGHT TO DECIDE WHATS BEST FOR THEIR DEAF CHILDREN? The recent case of Lee Larsen in Grand Rapids, Michigan, was scary, but the outcome affirmed that a mother could refuse to give her deaf kids implants (even though county authorities believed that it was in the childrens best interests), and that the court could not overrule her decision and implant them against her will. Parents currently have the ole legal right to decide whether or not their child receives an implant. There are some Deaf people who feel that parents should not be the ones to make this decision. They believe that the deaf child should have the final say. In this view, receiving a CI should be a matter of informed consent by the deaf person only. Parents have been making decisions for their children since the beginning of time. They continue to do so, of course. There have been ome cases in which the courts have overruled parents in the case of life-threatening emergenciesi.e., situations in which the childs health was endangered but the parents religious beliefs conflicted with the childs medical needs, such as receiving a transfusion. (Note that we do not consider deafness a life-threatening condition or a medical emergency.) No one argues that parents have a legal right to determine what they believe is in their childrens best interests or best for their families. But we, as deaf children of hearing parents, feel that we have a right to question the bases for these decisions. After all, we are the ones who have to live with the consequences of our parents decisions. Their choices have profound repercussions in every aspect of our lives. Most deaf people we know who have grown up in oral programs and become igners have a lot of anger about their upbringings. They are angry about being deprived of communication, of spending a tremendous amount of time and energy on trying to improve their speech when they could have been getting an education and interacting with others. They are angry about the time and money wasted in speech and auditory therapy. Wasted time cant be retrieved. MISGIVINGS Many parents have made, and continue to make, decisions that are motivated by love and concern, but turn out to be mistaken. Making mistakes is part of being human, and part of parenting. We have begun to encounter parents who have already given their deaf children cochlear implantsand are now sorry that they did. We have a bit of advice for parents in this situation: dont get bogged down with guilt. Invest your time and energy wisely. Establish closer connections with the Deaf community. Network with other parents. Encourage your deaf child to have other deaf friends. Read to her. Teach her how to cope with hazing. Dont stop signing. Keep learning, keep practicing, and increase your skills. A FINAL WORD You are not alone. We assure you that you can get the support you need from other parents and Deaf adults by networking. You dont have to go through this alone. And you shouldnt. Introduction | History | Forum | Newsflash For Parents Only | Myths & Facts | Deaf can do All original material used in CochlearWar.com is the property of MSM Productions, Ltd. and is protected by copyright. No material can be excerpted, paraphrased, or published in any form (whether in print of electronically) without the express written permission of the owner. ©2003-2015, MSM Productions, Ltd. http://www.cochlearwar.com/for_parents_only.html Likes: (3) hoichi, MMcC, Nic Jezie is offline Reply With Quote View Public Profile Find More Posts by Jezie Old 08-26-2015, 04:44 PM #2 hoichi hoichi's Avatar Join Date: Dec 2013 Location: Dancing my way to oblivion Posts: 5,187 Likes: 207 Liked 653 Times in 512 Posts That was a very balanced article, thank you for posting it jeize. __________________ ..."sign will set you free". a genie signed to me. as a mirror now reflect it. to other hands into other eyes, signs our greatest treasure, its light wants to be shared ..im ...that shadow with a cigarette, A Deaf guy who knows whats at take..... hoichi is offline Reply With Quote Find More Posts by hoichi Old 08-26-2015, 05:34 PM #3 Quote: Originally Posted by hoichi View Post You are welcome... Old 08-26-2015, 05:47 PM #4 Jane B. Join Date: Mar 2011 Posts: 3,369 Likes: 272 Liked 164 Times in 123 Posts Balanced???? It seemed to be ALL from the perspective of those that aid DO NOT IMPLANT!! I feel sure there are those that are grateful that they got an implant very early. Likes: (1) ambrosia Jane B. is online now Reply With Quote Find More Posts by Jane B. Old 08-26-2015, 06:00 PM #5 Originally Posted by Jane B. View Post Well...i found the article to be rather balanced, and certainly not extreme, it seemed preety even handed about the issue. Makes sense and allot of food for thought Its refreshing compared to the usual steady implant propoganda we are inflicted with by ci adherents and cult followers... Old 08-26-2015, 06:32 PM #6 I have been looking for some articles that do state this... nit from parents or doctors.. but from the deaf adult that was implanted as a baby.... if you find some or know of them can you shoot them to me in a pm... I am interested in the full picture... and would appreciate it Old 08-26-2015, 06:36 PM #7 Bottesini Old Deaf Ranter Bottesini's Avatar Join Date: Mar 2008 Location: HFA Posts: 43,008 Blog Entries: 2 Likes: 1,696 Liked 1,718 Times in 935 Posts Originally Posted by Jezie View Post I know several that feel that way. You need to get out in your community and meet people. Just reading online isn't going to give a balanced picture at all. Bottesini is offline Reply With Quote Find More Posts by Bottesini View Blog Old 08-26-2015, 06:37 PM #8 Oh, and I also know some who feel the opposite. Old 08-26-2015, 06:45 PM #9 Nic Nic's Avatar Join Date: Jun 2015 Location: Seattle, WA Posts: 285 Likes: 45 Liked 84 Times in 59 Posts It is all from that perspective, the article is mostly opinion, and the ource is questionable. There are some good points, like the part about cost and who profits and where there more or less said do some research before you buy because you can't always trust a salesperson. We need more first hand accounts, more young adults telling their story without someone between us and them. People implanted at < 2 years old are just hitting their prime years now though, since implanting at that age didn't really start until the 90s. They're just finishing up school and entering the work force. Hopefully more first hand experiences will come through in the next few years. Likes: (2) ambrosia, Jane B. Nic is offline Reply With Quote Find More Posts by Nic Old 08-26-2015, 06:52 PM #10 Originally Posted by Bottesini View Post I see you point and agree whole heartedly with you ... the community here is small... and the pool is smaller ... Old 08-26-2015, 06:54 PM #11 I don't know if you are able to move to a bigger place, but online eems to really bring out the extremists on both sides. Old 08-26-2015, 06:58 PM #12 I've met a few who've had early implants. But they were all college kids in public universities. It's really an unfair sampling. They've all had good support systems and probably would have been successful regardless of implants. That's kind of the danger of it, meeting random folks and getting their tories, there are hidden imbalances and you might end up meeting folks who only have one experience or opinion over the other. There have to be research studies on early implants and success in HS/college by this point that have come out of Gal or NTID. It might be too soon though, the current available sample size might still be too mall. Old 08-26-2015, 07:06 PM #13 Crickets Join Date: Feb 2014 Location: NH Posts: 91 Likes: 17 Liked 83 Times in 38 Posts Well, there aren't many adults yet who were implanted as babies. According to an Internet search I just did, Cochlear implants were approved for children in the US around 1990, but I don't know when babies began receiving them. But even if the first Cochlear implant for a 12-month-old was done in 1990 (No idea if that's true) that person would be just 26 now. Last edited by Crickets; 08-27-2015 at 12:28 PM. Crickets is offline Reply With Quote Find More Posts by Crickets Old 08-26-2015, 07:12 PM #14 Sadly at this time no... and where I am planning to move I believe is even smaller than where I am... Old 08-26-2015, 07:14 PM #15 Yes implants in babies has been bieng done only since 90s.. Old 08-26-2015, 07:17 PM #16 That seems to be the nature of the net, prob has to do with the assumed (not real mind you) anonyminity of it, Old 08-26-2015, 07:21 PM #17 Originally Posted by Crickets View Post would be just 24 now. Thats one of the plms adherents of ci face. On the one hand they are religious about the oppurtunities the maricle has showered upon its blessed implanted babies and children, on the other it has very little real data to even back it up, considering the babies who have been inplanted would only be 24 or so tops Old 08-26-2015, 07:29 PM #18 Originally Posted by Nic View Post Right, and when many start telling of the deblitating migrains and other negative ramifications expect it to be dismissed and scoffed at, as is the usual. The thread is new, The discussion certainly isnt, Is the site of the op as questionable as ci company sites, pushing A product to sell? Maybe, though the op site isnt pushing a product to sell you, it does have a position and stand on the issue Personally ive known first hand more early implanted that have had drastic negative effects from them then havnt. Im not stating non are out there, just my experience..in person not online to be clear. Anyway Im suprised to see this site still up,thought it was long gone...good to see it Old 08-26-2015, 07:35 PM #19 The same can be said for those who say that implanting babies won't produce positive outcomes - or will prevent them - in the long run... Little data to back up that argument either. Seems like a good topic for a few studies. Although with HIPAA laws, an independent researcher finding those people to study/survey them in a scientific way could be a challenging task. Just saying, "I know several people who ended up with migraines," or "All the people I know with implants love them, " means nothing unless it's part of scientific research and statistically valid. I've had migraines my whole life and they're not due to any implant. Unless it can be shown that people with implants have statistically more health problems than they would have gotten without implants, there's no way to know. Old 08-26-2015, 07:54 PM #20 finding those people to study/survey them could be a challenging task. Sure, but to error on the side of caution is the better bet, when it comes to drilling holes into.babies heads...well for me anyway... What other product are we implanting in babies on a mass scale using the above logic? Is that really the pitch to parents?"we dont have data either way" The first implants into babies were done in france against medical opposition by leading surgeons, its important to get a handle of the ideology that drives it, obviously it had no data to back the cliams up, and still hardly doesnt regarding the shower of lavish oppurtunities that awaits an implanted baby if and only if the baby is implanted..now 25 years on some data will.exist,but when implants were first pushed none did. Its interesting because the ci industry resembles big pharma in every way, how it markets, and manufactures needs to be purchased so on, and im sure big pharma has its adherents too. The big idea and paradigm shift big pharma brought to advertising was the idea not to market the product alone. but instead to market the illness. The idea was advertising to product wasnt generating the return....if you market the symptoms...the illness, people will start to actually see them..and thus want the product, regardless if they truly need it or not. its a cheap parlour trick in advertising ci also uses, thus the entire idea of fixing, and ignoring already present olutions so on. To bring this back Its almost absurd one would justify an implant by stating we have no data either way. Unless thats a sandard now in medical science I wonder Old 08-26-2015, 08:27 PM #21 There are never going to be guarantees with implants, nor probably agreement about whether they're appropriate. All parents don't agree on immunizations or many other decisions regarding health. Most parents just try to give their kids the best chance of success as they see it but that's going to mean different things to every parent. Just as ending a child to an expensive school is no guarantee they'll get into Harvard, implants don't guarantee that a child will be more successful, but nothing else will either. That isn't going to stop parents from pending money in the hope it will improve their children's odds to have a better life. Unless implants are shown to not be effective for any child, or to be very dangerous, why would parents not consider them just as they do other things? Kids have their tonsils out and other medical procedures even with a slight risk of death or complications, kids climb trees and kateboard and do all kinds of things more risky than getting implanted. Some parents are going to decide to have their children implanted and that's not likely to change as long as at least some children benefit from them and as long as their children are eligible. No choices a parent makes come with a guarantee. ambrosia, drphil Old 08-27-2015, 07:23 AM #22 HOH-ME Join Date: Feb 2013 Posts: 471 Likes: 5 Liked 33 Times in 30 Posts As a deaf adult who now has CI's, get your deaf baby to the CI clinic as fast as you can. Life is SOOOOOO much better with sound, speech understanding and music. I've been on both sides, hearing is FAR better than not!! drphil HOH-ME is offline Reply With Quote Find More Posts by HOH-ME Old 08-27-2015, 11:05 AM #23 I wouldn't trust information from the CI industry anymore than I'd trust information from that site. They both have clear goals and their opinion on the matter is out for display prior to reading anything. Research can and does happen in an unbiased way. Research Universities are great at it. Then with enough independent studies by different research universities, clear trends are visible. Old 08-27-2015, 11:29 AM #24 outthpaw outthpaw's Avatar Join Date: Jan 2011 Location: Sparks, NV Posts: 1,127 Likes: 13 Liked 274 Times in 180 Posts Send a message via AIM to soutthpaw Originally Posted by HOH-ME View Post Just curious if you are fluent in Sign Language and at what age you learned it? I choose Happiness over Society outthpaw is offline Reply With Quote Find More Posts by soutthpaw Old 08-27-2015, 12:49 PM #25 [ Well we have been chatting about this for a bit, if this is what you tate, ill tske yoir word for it, im not going to claim to know what goes on in your mind. This isnt just about research, though. Old 08-27-2015, 12:54 PM #26 In other words, hearies are so much better then Deaf, they can flap their lips like good parots, and listen to the soothing sounds of ozzy osborn, hearies are so much better then second class Deaf, Get your baby fixed now.... Mmmmm.. Yeah, the net offers this kind of rubish, in person inplants a long with some teeth prob would be removed.... Meh Old 08-27-2015, 12:56 PM #27 Your just ignoring the issues and statng water is wet, yeah life has no gaurantees... Ok Next..... Old 08-27-2015, 12:59 PM #28 blondie123 Join Date: Aug 2015 Posts: 1 Likes: 0 Liked 0 Times in 0 Posts after mastoid surgery Ive had 2 surgeries on my ear, one to fix a hole in my ear drum then another to remove a mastoid tumor which was non cancerous. Has anyone had any mental issues resulting after their surgery? I dont know if its from the surgery or if its something else. I had a long recovery after my second surgery, which resulted in me having a couple respiratory infections, and my thyroid quit all at once after my surgeries were over. I was unable to work for almost 2 years, since then I feel more tressed and etc. I just didnt know if its a result from being so sick or not. I couldnt stand to be around noises for awhile after my urgeries. I stayed home where its quiet and still do even though its been 2 years after my surgery. I dont even think I can hold a job after the surgery for more than 6 months because of hearing loss. I had so many headaches for a long time before the surgeries, I never left home, tayed home and slept, it was just like migranes. Maybe its just the fear of going through it all again because they told me it was going to happen with my other ear. I just cried for 2 days after I heard I had a tumor, the doctor said he didnt know where it came from. Ive tried college and have quit twice already from being under stress. Please omeone just give me some advise. And thanks in advance. blondie123 is offline Reply With Quote Find More Posts by blondie123 Old 08-27-2015, 01:08 PM #29 Frisky Feline Join Date: Jun 2003 Posts: 26,134 Likes: 462 Liked 588 Times in 362 Posts there are TOO many babies at age 5 months old who received CI. It has been spreading out everywhere. Oh well. I accepted it. KarissaMann05 Frisky Feline is offline Reply With Quote Find More Posts by Frisky Feline Old 08-27-2015, 01:25 PM #30 Originally Posted by blondie123 View Post I suggest making your own thread as this is really off topic. You will probably get a better response too. This is about parents considering implants for kids « Previous Thread | Next Thread » Thread Tools Show Printable Version Show Printable Version Email this Page Email this Page Display Modes Linear Mode Linear Mode Hybrid Mode Switch to Hybrid Mode Threaded Mode Switch to Threaded Mode Posting Rules You may not post new threads You may not post replies You may not post attachments You may not edit your posts BB code is On Smilies are On [IMG] code is On HTML code is Off Forum Rules Forum Jump [ Hearing Aids & Cochlear Implants___] Go All times are GMT -5. The time now is 01:18 PM. [-- Default] Contact Us - All Deaf - Archive - Privacy - Advertise - Links - Top Join AllDeaf on Facebook! Follow us on Twitter! AllDeaf proudly supports St. Jude Children's Research Hospital Copyright © 2002-2016, AllDeaf.com. All Rights Reserved. RSS Feed AllDeaf.com Perks - Advertise - Spy - Who Quoted Me Blogs Recent Entries Best Entries Best Blogs Blog List Search Blogs Go Back AllDeaf.com > Deaf Interests > Hearing Aids & Cochlear Implants Reload this Page Considering implant for your child LIKE AllDeaf on Facebook FOLLOW AllDeaf on Twitter User Name User Name_ [ ] Remember Me? Password __________ Log in Advertisement Register Blogs FAQ Social Groups Calendar Search Today's Posts Mark Forums Read Reply Page 3 of 6 < 1 2 3 4 5 > Last » Thread Tools Display Modes Old 08-29-2015, 07:26 PM #61 Jane B. Registered User Join Date: Mar 2011 Posts: 3,369 Likes: 272 Liked 164 Times in 123 Posts Quote: Originally Posted by Bottesini View Post You mistake me for someone who has an interest in you. Only pointing out for Nic that you are nothing but a hearie who lost it, then got implanted. You are not Deaf and know nothing about it. All your views are hearing centric. I don't think HOH=ME ever claimed to be anything other than someone that had hearing, lost it, and then was implanted. He then goes on to ay that he is grateful for the ability to hear again and recommends it to others including babies. Jane B. is online now Reply With Quote View Public Profile Find More Posts by Jane B. Old 08-29-2015, 07:38 PM #62 hoichi hoichi's Avatar Join Date: Dec 2013 Location: Dancing my way to oblivion Posts: 5,187 Likes: 207 Liked 653 Times in 512 Posts Originally Posted by Jane B. View Post His post was insulting,and condescending, dripping deep in audism...he also says so what regarding implanting our babies, essentially he trolled the thread...he offered no valube imput on the issue, he gloats, and dimisses Deaf on this thread, And thus he was handled __________________ ..."sign will set you free". a genie signed to me. as a mirror now reflect it. to other hands into other eyes, signs our greatest treasure, its light wants to be shared ..im ...that shadow with a cigarette, A Deaf guy who knows whats at take..... Likes: (3) AlleyCat, Bottesini, soutthpaw hoichi is offline Reply With Quote Find More Posts by hoichi Old 08-29-2015, 08:43 PM #63 Crickets Join Date: Feb 2014 Location: NH Posts: 91 Likes: 17 Liked 83 Times in 38 Posts Originally Posted by hoichi View Post Hoichi, you know what comes across as insulting and condescending? Referring to deaf babies as "ours." Other people's deaf babies aren't "yours" and you don't get to have a say in whether they get implanted or not; their parents do. It's a bit creepy when you imply that you know what's best for other people's deaf kids just because you also can't hear. You don't like it when babies get cochlear implants - we get that. But yeah, so what? Parents get to choose the culture their children are brought up in. They get to choose their child's religion, chools, and all kinds of other things for their children. Other people making legal choices for their babies isn't any of my business and isn't any of yours, either. Likes: (4) ambrosia, BleedingPurist, Jane B., Lau2046 Crickets is offline Reply With Quote Find More Posts by Crickets Old 08-30-2015, 08:04 AM #64 trolled the thread...he offered no valuable input on the issue, he gloats, and dismisses Deaf on this thread, This forum is "Alldeaf" so you are going to have to recognize that all different viewpoints have an equal right to be expressed (and will be). Likes: (1) BleedingPurist Old 08-30-2015, 08:28 AM #65 LoveBlue LoveBlue's Avatar Join Date: May 2010 Posts: 6,303 Likes: 1,198 Liked 1,173 Times in 672 Posts I believe this forum was created mainly for those who were born deaf (medically) and are immersed in Deaf culture now, either from birth or later (if they were raised orally). The fact that they tolerate those of us who are deaf/HoH and have not chosen to learn ASL and immerse ourselves in Deaf culture is appreciated by myself. I know I have probably made audist statements in the few years I've been here and I apologize for that. Just as it is hard for me to imagine what it is like to grow up deaf, I'm sure it is hard for those who were born deaf or lost their hearing at a young age to imagine what it is like to hear. Severe-to-profound hearing loss in both ears. SD @ 110db L-62% / 100db R-84% - unaided Phonak Naida IX UPs LoveBlue is online now Reply With Quote Find More Posts by LoveBlue Old 08-30-2015, 08:36 AM #66 HOH-ME Join Date: Feb 2013 Posts: 471 Likes: 5 Liked 33 Times in 30 Posts You are wrong. I am deaf, but my deafness has been fixed with CI's. Just curious--for those that think HA's and CI's are evil, do you wear glasses or would you wear them if your sight required it???? No, this forum is Hearing Aids and Cochlear Implants . HOH-ME is offline Reply With Quote Find More Posts by HOH-ME Old 08-30-2015, 08:41 AM #67 hel90 Audist are not welcome hel90's Avatar Join Date: Sep 2006 Location: A place where crabs are popular Posts: 44,563 Blog Entries: 3 Likes: 379 Liked 731 Times in 410 Posts One mother in a parent of deaf and hoh children FB group claim that it is because of her son's 2nd implant, he is in advanced math. Ok if people are implanting babies which is their business BUT that view that this mother holds will be rampant in which will leave those deaf who don't have implants with a stigma as if they aren't as smart, functioning, or as valued as those who have implants. These audist views that does nobody any good and I see examples of those views here in this thread. Seriously? "Wine improves with age. The older I get, the better I like it." --- Anonymous hel90 is offline Reply With Quote Find More Posts by shel90 View Blog Old 08-30-2015, 08:44 AM #68 Originally Posted by HOH-ME View Post I was referring to the entire forum. It is divided into sections one of which is Hearing Aids and Cochlear Implants. I do feel that these comments you have made here are in the right section. Old 08-30-2015, 11:04 AM #69 outthpaw outthpaw's Avatar Join Date: Jan 2011 Location: Sparks, NV Posts: 1,127 Likes: 13 Liked 274 Times in 180 Posts Send a message via AIM to soutthpaw The part I don't get is why someone with hearing loss that functions in a totally hearing world and does not sign, is not on The AG Bell, or CI focused forums/communities. To come here and preach audism seems a bit like trolling? I choose Happiness over Society AlleyCat, hoichi, KarissaMann05 outthpaw is offline Reply With Quote Find More Posts by soutthpaw Old 08-30-2015, 02:31 PM #70 drphil Join Date: Jul 2010 Location: Toronto Ontario Posts: 4,793 Likes: 121 Liked 28 Times in 25 Posts Isn't the name of this forum "ALLDEAF.Com"? Thus "presumably" the DEAF who use a Cochlear Implant can be part and not be considered- "trolling? Get Real:Implanted Sunnybrook/Toronto -Advanced Bionics-Harmony activated Aug/07 drphil is offline Reply With Quote Find More Posts by drphil Old 08-30-2015, 02:59 PM #71 Originally Posted by drphil View Post As far as I know, you're the only DEAF person on this forum. The rest of us are either deaf or Deaf. AlleyCat Old 08-30-2015, 03:13 PM #72 [ Originally Posted by Crickets View Post "yours"r. They are as much ours as any born to any cultural or linguistic minoority. Be insulted all you want..meh and you don't get to have a say in whether they get implanted or not; their parents do.r. Indeed water is wet. actually parents should give a listen to what we are trying to inform them off. Yeah i get it, your the kind to be easily manipuluted by marketing and false promises, clearly just a typical religious adherent, unable to see past you idol...and maricle cure...meh It's a bit creepy when you imply that you know what's best for other people's deaf kids just because you also can't hear. r. Thats not the reason at all....what is very creepy, is the religious devotion you share in frothing at the mouth visions of implantng our babies....yeah this assimilation is creepy... You don't like it when babies get cochlear implants - we get that. But yeah, so what? r. Your just dismissing us Deaf in this statement..... Parents get to choose the culture their children are brought up in. They get to choose their child's religion, schools, and all kinds of other things for their children. Other people making legal choices for their babies isn't any of my business and isn't any of yours, either. what is happining, the implants the assimilation, the attacks on my people and culture, our language..is My bussiness. Whether audist like you, like it or not.. Old 08-30-2015, 03:26 PM #73 Never stated otherwise. Old 08-30-2015, 03:30 PM #74 This forum is allDeaf, the subforum is hearing aids and ci. Comparing glasses to.ci doesnt hold, as it ignores culture and language, and history, and the effects of this technology of normalization and assimilation on our future. __________________________________________________________________ Last edited by hoichi; 08-30-2015 at 05:37 PM. dogmom Old 08-30-2015, 03:32 PM #75 Thats not the issue...allDeafis open to everyine, Deaf, deaf, hearies.. And you know it Old 08-30-2015, 03:33 PM #76 Originally Posted by LoveBlue View Post There is prob a deaF and a dEaf, and a deAf on here too Old 08-30-2015, 05:07 PM #77 Join Date: Jan 2012 Posts: 552 Likes: 79 Liked 52 Times in 31 Posts minoority.. Nope. They only become this so-called "cultural or linguistic minority" by deprivation of both a sense and their natural culture. Their natural culture is the one they are born into within their family. A tiny group of Deafies salivating over an infant born into the world with a broken sense, hungry to grab them from their families and natural culture to make them like them is creepy. Their lack of or limitation in that sense doesn't automatically make them one of yours anymore than an adult going deaf does. There are ways to prevent their being sucked into a culture that depends on inability to interact with the world at large, just like becoming religious can be staved off by education. I'm for full access for children born or going deaf. They can decide as they get older if they want to be part of or even like your world. They'll have that choice versus just defaulting because they have no choice. This is a great thread! Any parent with half a brain reading it is going to do everything they can for their child to access world at large versus handing them over to deaf adherents that use cultish "logic." It really is bizarre that a "late-deafened" individual shows no signs of ever having actually been that and is one of those being loudest about "culture"... a culture you were never born into and is not really yours... which explains the loud protesting whereas one who actually was born into it would be more likely to have a live and let live approach. ambrosia BleedingPurist is offline Reply With Quote Find More Posts by BleedingPurist Old 08-30-2015, 05:25 PM #78 Originally Posted by BleedingPurist View Post culture is the one they are born into within their family. h. Nope. Sign is the birth right language for Deaf.... Its not so called. We ARE a culture, sign IS a language, and we ARE a minority...areyou arguing we Deaf are the majority?? natural culture to make them like them is creepy. h. We are actually not a tiny group...you seem to be an expert on us...let me ask you something, to help gauge your expertise here Do you sign? Their lack of or limitation in that sense doesn't automatically make them one of yours anymore than an adult going deaf does. There are ways to prevent their being sucked into a culture that depends on inability to interact with the world at large, just like becoming religious can be staved off by education. h. Our culture doesnt depend on inability, your adudism betrays you..our culture rests on ability. Sign is an ability...not a lacking choice. h. So you say, excuse me if i feel your full of it.. "logic."h. It truly is, i havnt seen audism like this come out the sewers for a while...your bigotry is shinning Its not that bizzare at all. Your post just betrays your utter lack of knowlege of us our history and how we accept people. I was hearie for 9 years of my life...ive been Deaf a signer for 30... Our history is full of people that went Deaf just like me at my age who were Deaf and accepted as Deaf,even in leadership positions, torytellers, poets, bizzare....? its not. rare it is not!..You havnt the faintest clue what your on about. I wont school you here to much, because i know your not sencere... But give a read of our history, and you will find many many kids that went Deaf, as Deaf. And accepted as such...a famous example would be veditz, of the preservation of sign language fame...we accept you, and our culture becomes yours when you sign and are one of us...or when your born one of us, when sign is denied you...we feel its your birthright language... Yeah you sit there an authoritaran wagging a finger at me about a culture your posts clearly show you know little about..and you expect to be taken seriously..... Spare me.. Live and let live? Pls by all means leave our babies and kids the hell alone...take your fetish drils and messiah tech and shove it where i igns dont shine.... Last edited by hoichi; 08-30-2015 at 08:19 PM. Likes: (2) Jezie, shel90 Old 08-30-2015, 05:27 PM #79 KarissaMann05 Premium Member KarissaMann05's Avatar Join Date: May 2007 Location: Salem, Oregon Posts: 6,851 Likes: 84 Liked 41 Times in 33 Posts Send a message via AIM to KarissaMann05 Send a message via MSN to KarissaMann05 Send a message via Yahoo to KarissaMann05 Send a message via Skype(TM) to KarissaMann05 But, Deaf babies aren't yours. We can just educate those parents about our subculture. But, if they don't want ASL, then there is nothing that we can do. It's little weird to claim Deaf babies are your children. rockin'robin KarissaMann05 is offline Reply With Quote Find More Posts by KarissaMann05 Old 08-30-2015, 05:29 PM #80 Jezie Jezie's Avatar Join Date: Mar 2014 Location: Georgia Posts: 1,613 Likes: 168 Liked 312 Times in 236 Posts Curious...How are you deaf though? "Its fixed"... Yes, but I also would not join a blind group and claim I am part of it. Actually the thread is for CI the fourm is alldeaf... Jezie is offline Reply With Quote Find More Posts by Jezie Old 08-30-2015, 05:36 PM #81 Curious... childern as a whole are generally consider "ours" in one way or another... we as a society are or often feel responsible for childern... maybe its the whole "it takes a village" adage... but it does stand to reason that one would feel that a child is part of his or her society or identity if they are born or obtain a classifying freature of it .... hmm really does not surprise me woth how much better African Americans fair compared to other minorities.... Last edited by Jezie; 08-30-2015 at 06:25 PM. Old 08-30-2015, 05:55 PM #82 Originally Posted by KarissaMann05 View Post If your refering to me, im using standard language any minority group does. When we state our people , (any minority group), its not literally using a property defination. As in. People are actually mine. So on Im not the first to use this language in regards to sign being a birthright for our culture and people...its stretches back a fair ways actually...you can even find it in nad literature. And british Deaf literature too. Its not ncommon.or rare for minority groups to actually use possesive terms such as this.."our people", "our children", "our language", "our culture"...ive never used nor will i ever use mine,or my..( in regards to babies or children) for obvious reasons...but i have used and do use my people in reference to Deaf, and my language and our language in reference to sign Even the secular state uses terms such as this as well in a number of ways.. Its not that rare.. Last edited by hoichi; 08-30-2015 at 06:27 PM. Old 08-30-2015, 07:21 PM #83 Join Date: Feb 2009 Posts: 7,731 Likes: 381 Liked 403 Times in 263 Posts Some years ago, my parents and I were having a conversation, in which the topic of bagels came up. I don't recall how we got to it and or the immediate preceding sentence to the following but what I remember is that my mom said "they aren't ours anymore, Moishe". Moishe is my dad's Jewish name. That is the bagels aren't "ours" - as in the cultural, ethnic definition. Most people in the U.S. now know what bagels are and you don't have to go to Chicago or N.Y. to get them But it's an example - one of many that has taken place in my experience - of "peoplehood" like Deaf are a cultural group...Deaf being the people of the eye in most instances dogmom is offline Reply With Quote Find More Posts by dogmom Old 08-31-2015, 05:50 AM #84 Inability to interact with hearing people? You just demoralized a group of people who have been able to purchase cars, homes, go out in the community, and raise hearing kids with success. You have a audist view. Old 08-31-2015, 08:07 PM #85 ambrosia's Avatar Join Date: May 2012 Location: Fort Worth, Tx Posts: 4,815 Likes: 165 Liked 161 Times in 55 Posts Meh, that wasn't an "article". It was an opinion piece, more like a blog. It was full of bias and unsubstantiated opinion. No evidence, no research, just anecdotes, we know this guy, there's a couple of cases. Poo on that. I saw someone wondering about people who implanted early. I have an ancedotal case for that. I'm a massage therapist, when I was going to chool for it my loss was severe in one ear, profound in the other. I did not use an aid in my profound ear, only my severe one. There was a guy in my class that was Deaf and had a CI. At the time (2007) he was maybe 24-26. So now he'd be about 33-35. Anyway, he used an interpreter, but he communicated with us well. Not sure exactly how old he was but he didn't really have a typical deaf accent, he had one, but not the recognizable deaf accent you usually hear so I think he got it fairly young, elementary age maybe. Later on we ended up working at the ame place, at this point I had lost more hearing and was relying more heavily on lip reading. He would see/hear me trying to have a conversation with coworkers and he would tell me everyday, EVERY DAY, that I needed to get a CI. He loved his and highly recommended. Dream as if you'll live forever. Live as if you'll die today ambrosia is offline Reply With Quote Find More Posts by ambrosia Old 08-31-2015, 08:22 PM #86 Originally Posted by ambrosia View Post No one has claimed the article isnt an opinion piece.. Not sure why thats an issue, Obviously in regards to bias, or opinion oriented web sights... ci companies are biased they after all are a bussiness with a product line to peddle... As all bussiness exist again obviously to make a profit, im sure the tock holders in ci corps certainly would agree. We Deaf dont see the drive, push and manipulation towards assimiliation in our best interests, we have always resisted and opposed it, seeing it exactly for what it is..."oralisms final solution"....we do not see it at all in the best interests for our babies implanted against there will..it certainly IS very much in the interests and profit of the ci corps, not us.. My interests is with my people, our future, wich is our babies and our young, not in feeding conpanies profit margins..my interest is in the preservation and advancment of my culture and our language..that are constantly attacked and threatened by ci and rhe professionals peddling it....the assimilation is a travesty and the future will look back on it as such.... Yeah i get it.. Your a new ci adherent.. Meh Old 08-31-2015, 08:28 PM #87 Hiochi man I love you, even though this an area we will never in a million years agree on, but I gotta say.......you're the who said it was "balanced". That was about as far from balanced as you could get. Old 09-01-2015, 08:44 PM #88 Ah.......(blushes).... your too kind ambrosia....thank you girl.... (Lights joint) Indeed we wont agree in this issue CI....all cool..well i thought the article was balanced....but i know to others it msy seem a bit extreme...its certainly not more.extreme then the push to implant...if anything the stand not to early implant is a more moderate stand then the rush to implant. Good to see.... As always... Old 09-02-2015, 07:33 AM #89 Not surprising but we don't seem to agree about what "balanced" means to each of us. In the context of an article I think of a "balanced" one as giving information about both sides of an issue. Old 09-02-2015, 12:43 PM #90 Hoichi's view is about as balanced as that of the Tea Party! « Previous Thread | Next Thread » Thread Tools Show Printable Version Show Printable Version Email this Page Email this Page Display Modes Linear Mode Linear Mode Hybrid Mode Switch to Hybrid Mode Threaded Mode Switch to Threaded Mode Posting Rules You may not post new threads You may not post replies You may not post attachments You may not edit your posts BB code is On Smilies are On [IMG] code is On HTML code is Off Forum Rules Forum Jump [ Hearing Aids & Cochlear Implants___] Go All times are GMT -5. The time now is 01:18 PM. [-- Default] Contact Us - All Deaf - Archive - Privacy - Advertise - Links - Top Join AllDeaf on Facebook! Follow us on Twitter! AllDeaf proudly supports St. Jude Children's Research Hospital Copyright © 2002-2016, AllDeaf.com. All Rights Reserved. Implant Blog - RSS Katie-Louise's Cochlear Implant Blog A Positive Journey with an Advanced Bionics Cochlear Implant! Tuesday, 29 April 2014 Advanced Bionics Family Fun Day Are you considering in getting a cochlear implant? Not sure which brand to go for? Why not spend a day at Sherwood centre parc, Nottingham to find out all the information you needs about Advanced Bionics. To register click on the links http://www.advancedbionics.com/content/ab/uk/en/get_connected/event_cal endar/june/abfamilyfunday.html [s_88.jpg] - Posted using BlogPress from my iPhone Posted by Katie-Louise's blog at 09:37 No comments: Links to this post Thursday, 17 November 2011 Advanced Bionics Insight Want to keep up to date with whats going on with Advanced Bionics?? Click the links to join Advanced Bionics Insight http://abinsight.bionicear.eu/en.html Posted by Katie-Louise's blog at 16:34 1 comment: Links to this post ClearVoice It's amazing how ClearVoice could make conversation a lot easier for you. I have had it for over a year now. And even now....thinking about it I realised how much it really does help. I was driving and not realising this untill now that I am able to hear the passenger voice a lot more than I used to. ClearVoice cuts out the sound of the car engine, winds and traffic near by. As soon as the background noise appear clear voice automatically kicks in. High Five to Advanced Bionics for bring ClearVoice out! Posted by Katie-Louise's blog at 16:06 No comments: Links to this post Wednesday, 10 August 2011 Advanced Bionics Website Some of you may have notice that some of the links for Advanced Bionics on this blog page are not working. The website address has now changed. While am currently sorting this error out. The website links is now http://www.advancedbionics.com/ Are you deaf....Considering a Cochlear implant? Needs some Advice/Support....Connect to a mentor here: http://apps.advancedbionics.co​m/CTM/UK/ Posted by Katie-Louise's blog at 11:00 2 comments: Links to this post Labels: Advanced Bionics, Advanced Bionics UK BEA UK Wednesday, 25 May 2011 3 years later! Can you believe it 3 years ago I went under the knife to get this amazing cochlear implant. I was so nervous and I almost changed my mind. I am so glad I went ahead with it. There nothing to be afraid of when having a surgery - its a bit like getting a headache the next day which doesn't last long. I can't believe how quick has it gone. I'm loving this hearing journey - its the best thing you could ever ask for. With my hearing aid I couldn't hear anything apart from loud noise and I have to lip-read all the time. With the Advanced Bionics I have now has help me to hear all sort of everyday environment sounds and I can actually hear people talking too. I don't always hear every word but I must say I don't lip-read as much as I used to lip-read and I can now hear on the phone. Only to the people I know well. I am still learning and there is more to learn. I never used to be into music and I now can't go on a long journey trip without my I-pod. I've made loads of friends especially world wide after creating this blog and I have met up with a lot of people who are now waiting to get an implant or has just had them. There journey seems to be going so well just like mine! Here to the next 3 years :-) Posted by Katie-Louise's blog at 14:36 4 comments: Links to this post Tuesday, 24 May 2011 Continue Blogging Well, its been a while since I have last posted on here. I haven't topped blogging. So as from now, I will do my best to keep posting to increase the awareness of what a Cochlear Implant is and also to share my personal experience with wearing a Advanced Bionics Device! I have changed the layout and I will be adding a TOP TIPS list at the left side of the page. To follow my old post please check the blog archive. Posted by Katie-Louise's blog at 13:46 1 comment: Links to this post Saturday, 2 October 2010 2010 Top Cochlear Implant Award! I would like to say a big thanks to those that has nominated me for the Top 15 Cochlear Implant Blog award. Doing this blog has inspired a lot of candidate, cochlear implant users. A BIG thank you to Nottingham Cochlear Implant team, Advanced Bionics, friends and family for supporting me through this an amazing journey. I also would like to thank Medical Assistant School for giving me this award. To find out more about the Top 10 blog awards click here 'Medical Assistant School' Top Cochlear Implants Blog Thank you all for nominating me and for reading this blog. All the best Katie-Louise Posted by Katie-Louise's blog at 21:50 3 comments: Links to this post Older Posts Home Subscribe to: Posts (Atom) Click to Visit Advanced Bionics "A life with "AB" is just amazing! Without this device, I don't think I would be where I am now! " Click on the logo to find out more about Advanced Bionic!" Blog Archive Katie-Louise Tips Bloggers laura's medical journey merry christmas 2015 2 weeks ago Cochlear Kids 11 Years of Hearing 3 months ago Sound of Cochlear Implant 7 months ago Turn On My Ears! Progress Report - 2nd Grade 10 months ago Hear the Sound Whoops the Loop! 1 year ago Anna's Sound Journey by Freedom Cochlear Implant 2nd day with N6 - in London 2 years ago Loudest House on the Block We were challenged today at our teacher's inservice to put ourselves out there and WRITE..... Sarah's Cochlear Implant Trialling a Neptune SURROUND SOUND Vanderbilt Image-Guided Mapping Test Results Laurie's Dance with Sound HLAA July/August 2012 Magazine Cover 3 years ago My Son Tom Milo Debs' Hearing Journey Telephone 4 years ago Gina Sprenkel - My New Life of Hearing I'm a Saladaholic Silent Sail Happy New yEar 5 years ago Subtitles wedding photography Phone and Music with CI nearly 2years on Kirsty's Cochlear Implant NOT HEARING VERY WELL CI Borg Some Updates Bionic Wombat - Bilateral cochlear recipient July 2010 Amanda's Cochlear Implant Journey Amanda update-March 10, 2010 Kate's Cochlear Implant My final post? 7 months on CHRONICLES OF A BIONIC WOMAN Free Neckloop From Clarity If Attending HLAA Convention 6 years ago deafgirllovessoaps Today's Appointment The journey of Claire's cochlear implant 3-monthly tune up Dawne's CI Journey Wow 7 years ago the DeafBlog Followers Blog-Network NetworkedBlogs Blog: Katie's Cochlear Implant Journey Topics: CI, BSL, Disability Join my network Number of Visitors click for free hit counter code html hit counter Advice/Support From Experience Cochlear Implant users Click the logo to find out more! I was implanted in April '08. I have written about my experiences from times to implantation to the present day. This would be a useful resource for anybody who has been recently implanted or is going through the assessements. I suggest you to look back at the blogpost in April to the present date There are useful Links to other bloggers or CI related are shown at the bottom of this page! If you have any question? E-mail me bionic-katie@live.co.uk or Join Advanced Bionics UK facebook group ; click here Find me on Facebook! Katie-louise Bailey's Facebook Profile Top 15 Blog Award A New Year 2009 Counter To See Where My Visitors are From? free counters Subscribe me [arrow_dropdown.gif] Posts [subscribe-netvibes.png] [subscribe-yahoo.png] [icon_feed12.png] Atom [arrow_dropdown.gif] All Comments Click the picture to enter their site! Katie's C.I Centre My Videos Loading... Myself & My Team In Russia Richard & Me Me and My Idol (Gareth Gates) Useful Cochlear Implants websites Me and the squad in Germany Picture Window template. Powered by Blogger. Implant Blog - RSS Katie-Louise's Cochlear Implant Blog A Positive Journey with an Advanced Bionics Cochlear Implant! Friday, 1 October 2010 I'm back! Hey all, It's been a while since I lasted posted on my blog. I know, I have been hiding. Over the past couple of months I have been on a rollercoaster ride - a big one! I had to have time out from alot of things. This is one of the reason why I haven't been blogging. So, what have I been up to over the past couple of months? Hmm, Let's see what I can remenber! Early march wasn't a good month. I had an accident in football and reptured the ligaments in the knee which forced me out of football for a while and it has left me getting from A to B with these horrible crutches that seems to get in your way all the time. So plenty of physio treatments - they are so mean, especially when they like to hurt you. But then again thats there job and its no pain, no gain! Now my knee fixed I have spent alot of my time working on my fitness - alot of running and strength training and so far I had a great start of the eason. Lets hope the rest of the season wil be as positive as it is now. Also got ill as well. University - I had a bit of a downfall with family menber being ill and I got ill myself which I had to have time out in. I did missed an awful a lot of lectures and had a lot of work to do. So I actually spent my whole summer trying to catch up. I caught up really well and pass the year ...thanks to the wonderful support team at university. Just tarted started universtiy last week. I was so weird to be back. It's nice to see all my course friends again. Summer '10 - didn't have much of a summer because the amount of university work I had to catch up on but I did manage to spare one week working at a children deaf camp. We had a full of fun fairs, beaches, day trip which was a HARD experince and hopefully next year i'll be doing some more camp work! and finally - progress on my COCHLEAR IMPLANT. As you all know I had a postive experince so far with my cochlear implant having new CI moment hearing new things all the time. Advanced Bionics has become part of me and it is something that made my life much more easier. My confident has grown with communicating with other and of course before the implant I refused to use my voice and now I am forever talking; that's what my friends and family says. ha ha. Now I have had my cochlear implant for just over two year now which has gone ever so quick! I have still got a lot of things that I need to work. Especially Identfying or understand where the sounds is coming from. Which isn't always easy especially when you haven't heard as much as you can now. I do have to say - not knowing where the sounds is coming from or finding it hard to knowing what the sound is can bother you. When I hear a sound and don't have a clue on what it is...it bugs me, Sometimes it can make you very nervous. So that is one of the reason why I don't like to be on my own. I do like to have company so I have someone to ask what the sound is if I struggle to know what it is. I do struggle to see where the sound is coming from. Hearing on one ide is difficult and I do wonder if going bilateral would make things easier and better. So...I am still waiting to see if I could go bilateral - it'd be nice to hear out of both ears. Anyway..... ClearVoice came out early this year. Late March I recieved the ClearVoice setting on my processor. I have a medium setting. I do have to say ClearVoice and made a big different in everyday situation, especiallywith background noises. Ever since I had ClearVoice setting I have found that communicating with other has become much more easier. Also because I drive the convosation between me and a friend/family or whoever is sitting in the passenger seat become much more easier too. The backgroud sound while driving such as; car engine, traffic noise, wind has cut out alot. I also notice that the music in my car is easier to listen to now than before the ClearVoice. Not that. I play football and in the changing room I do have problems listening became of how the room is. Since I had CV it has help me to listen much better and now I am much more confident. I have notice, well others has notice too that my voice seems to have gone a bit quieter. I think that because the amount of backgroud sounds has reduce my voice stays quiet and I don't realise on how loud the room actually is without clear voice. So I have to work on the loudness on my voice . So back at the speech theripst again - a wonderful team to help me. Anyway - BEA as I mention before in my previous post - I am still a mentor so If you would like to ask any question about my cochlear implant journey feel free to post me a message on this link and I'll get back to you as soon as I can. BEA UK www.BionicEar.com/UK Right, I'm off for a long run in this horrible rain. It's not long before it snow - yep, xmas is just around the corner. Sorry to mention it early. Ha. Take Care Katie-Louise x Posted by Katie-Louise's blog at 16:46 2 comments: Links to this post Friday, 19 March 2010 BEA UK - Get Connected with a Mentor Bionic Ear Association UK - Get connected to a cochlear implant community Hear and Be Heard The Bionic Ear Association is a support network dedicated to improving the quality of life of individuals with severe-to-profound hearing loss by providing valuable information, education, awareness, and guidance on cochlear implants. Staffed with a committed team of audiologists and cochlear implant recipients, the BEA offers important support services to help you hear your best. The United Kingdom Bionic Ear Association (BEA/UK) offers you a community of cochlear implant recipients, families, volunteers and taff, all from the UK, who can support you throughout your hearing journey. Connecting with other cochlear implant recipients and families is an important part of the hearing journey. Through BEA UK you can connect with other cochlear implant recipients or parents, who can assist you in navigating the process of choosing and living with cochlear implants. Read our recipient stories, find a mentor, check out our online community, and participate in the BEA UK community: Posted by Katie-Louise's blog at 07:12 No comments: Links to this post Labels: Advanced Bionics, BEA UK contact networks Thursday, 11 March 2010 Invitation to - An AB Information Morning Advanced Bionics (AB) invites CI candidates and/or their parents to an information morning (10am-12:30pm) on 14th April at the Ear Foundation, Nottingham. At this event you will find out more about the unique Harmony Bionic Ear System, the new ClearVoiceTM upgrade, performance & reliability. There will be opportunity to meet and ask questions to ABs Clinical Specialists and existing CI users. If you would like to attend, please RSVP to events co-ordinator; e-mail uk@advancedbionics.com Posted by Katie-Louise's blog at 15:39 8 comments: Links to this post Tuesday, 9 March 2010 Advanced Bionics UK Chat-Room/Facebook! Are you a candidate and is going through your Cochlear Implant assessment but has all these question that you would like to ask and hasn't got any one to talk to well; AB UK CHATROOM is for you. Join in the chat room every Thursday at 7pm and onwards. There will be ome AB users online to answer your questions and to support you all the way. To join please sign up for www.hearingjourney.com click on "online Community" and then click chat. Also Advanced Bionics UK has now got their very own facebook group to join there facebook group please click here: AB-UKfacebook Posted by Katie-Louise's blog at 15:18 2 comments: Links to this post Labels: Advanced Bionics UK BEA UK Monday, 25 January 2010 Harmony Batteries! Has anyone ever accidently picked up a used battery from the charger, and didn't look at the led light to see how much battery life it had and went out without a spare one, thinking the battery is not gonna die on you till the end of the day? How do you all feel when the power cuts off on you during the day? My cochlear implant battery has never ever died on me through the day, every morning I put on a fully charged battery and it would normally last me a whole day (roughly12 hrs) and if I stay up later, I don't normally replace it and just leave the implant on my head while the battery flat. Today, for the first time since I have had my Cochlear Implant, the battery power actually went dead on me while at university. I accidently took the wrong battery and it wasn't fully charge. When it went off, I actually thought there were something up with the processor. I was without my processor for the whole afternoon at university. I didn't bring a spare one with me and I couldn't see if it was just the battery. That afternoon, while I was at university, I had only a note-taker and because I could lip-read the lecturer I had. we had to work in groups and even though all my friends knew me very well that I do lip-read a lot. I did had to warn my friends that my cochlear implant has stopped working that they would need to tap me for my attention rather than calling my name out. Thanks to my lip-reading kill, I managed that afternoon really well. Not hearing through my processor that afternoon actually reminded me what it used to be like before my cochlear implant and how hard I had to concentrate. From now on.... I must check the led light before putting my processor on. I hate being without my cochlear implant now, it really does mean a lot to me and when I have it on I really do relaxs more. Posted by Katie-Louise's blog at 21:55 20 comments: Links to this post Labels: Advanced Bionics, Contact Network. Batteries. University Thursday, 14 January 2010 ClearVoice for HiRes Fidelity 120 2010 has come so quick, hasn't it? Anyway, I hope you'd a brilliant Xmas. I have had a good Xmas, spend 2 weeks goin' from Scarbrough to Manchester with my family and Rich's family. I actually lost count on how many Xmas dinner I had, we visited so many places. Anyway. I would like to say Happy New Year Everyone. I hope you all will have a good year. I've got lots of things to look forward to, especially summer. I just hope this year go pretty quick because this time next year we should hopefully hear from the N.I.C.E guidance (National Institut for Health and Clinical Excellence) and hopefully they will finally say 'YES' to let us adults go "BILATERAL." I really do want a 2nd cochlear implant and I hope to get it before I completed my degree so I could go straight into teaching without havin' to worry about another operation, or going the rehab process. So, fingers cross. Just looked on Advanced Bionics website, thought I'd share this to you all just incase you haven't seen it - ClearVoice - Revolutionary Technology to Help Patients Hear Speech Clearly to find out more please click on the links; http://www.advancedbionics.com/CMS/Products/ClearVoice/ It looks very interesting and I am interested to see how much this ClearVoice would help me too. Right. I'd better be off. First day back at university tomorrow. I can't believe how quickly this Xmas hoilday ended. Ciao x Posted by Katie-Louise's blog at 16:45 4 comments: Links to this post Labels: Advanced Bionics, advanced bionics contact network, Katie-louise Saturday, 12 December 2009 Skin It - My design! Those of you that doesn't know what is 'Skin It' Check out this website www.skinit.com. you can customize your sound processor to match your mood or make a fashion statement. Dress your processor up with your favorite colors, ports teams, or works of art. You can choose from hundreds of designs or even upload your own graphics for a completely unique look. "Lets show other that we don't only have fashionable clothes, we also have fashionable procesoors" Check out my design - At the moment I have decided to wear pink zebra and Twilight "Edwards" mixed, I love Twilight, so I thought I put Edwards on. I have also got a few other designs such as 'St Geogre Flag'that will used when I repersent England again, pink with Derby County logo on and I have a Xmas one which will be used while I am in Scarbrough. (I will try and upload thoses when I have put them on my processor in the future) Go ahead and Design yours now.... Posted by Katie-Louise's blog at 13:37 19 comments: Links to this post Newer Posts Older Posts Home Subscribe to: Posts (Atom) Click to Visit Advanced Bionics "A life with "AB" is just amazing! Without this device, I don't think I would be where I am now! " Click on the logo to find out more about Advanced Bionic!" Blog Archive Katie-Louise Tips Bloggers laura's medical journey merry christmas 2015 2 weeks ago Cochlear Kids 11 Years of Hearing 3 months ago Sound of Cochlear Implant 7 months ago Turn On My Ears! Progress Report - 2nd Grade 10 months ago Hear the Sound Whoops the Loop! 1 year ago Anna's Sound Journey by Freedom Cochlear Implant 2nd day with N6 - in London 2 years ago Loudest House on the Block We were challenged today at our teacher's inservice to put ourselves out there and WRITE..... Sarah's Cochlear Implant Trialling a Neptune SURROUND SOUND Vanderbilt Image-Guided Mapping Test Results Laurie's Dance with Sound HLAA July/August 2012 Magazine Cover 3 years ago My Son Tom Milo Debs' Hearing Journey Telephone 4 years ago Gina Sprenkel - My New Life of Hearing I'm a Saladaholic Silent Sail Happy New yEar 5 years ago Subtitles wedding photography Phone and Music with CI nearly 2years on Kirsty's Cochlear Implant NOT HEARING VERY WELL CI Borg Some Updates Bionic Wombat - Bilateral cochlear recipient July 2010 Amanda's Cochlear Implant Journey Amanda update-March 10, 2010 Kate's Cochlear Implant My final post? 7 months on CHRONICLES OF A BIONIC WOMAN Free Neckloop From Clarity If Attending HLAA Convention 6 years ago deafgirllovessoaps Today's Appointment The journey of Claire's cochlear implant 3-monthly tune up Dawne's CI Journey Wow 7 years ago the DeafBlog Followers Blog-Network NetworkedBlogs Blog: Katie's Cochlear Implant Journey Topics: CI, BSL, Disability Join my network Number of Visitors click for free hit counter code html hit counter Advice/Support From Experience Cochlear Implant users Click the logo to find out more! I was implanted in April '08. I have written about my experiences from times to implantation to the present day. This would be a useful resource for anybody who has been recently implanted or is going through the assessements. I suggest you to look back at the blogpost in April to the present date There are useful Links to other bloggers or CI related are shown at the bottom of this page! If you have any question? E-mail me bionic-katie@live.co.uk or Join Advanced Bionics UK facebook group ; click here Find me on Facebook! Katie-louise Bailey's Facebook Profile Top 15 Blog Award Top Cochlear Implants Blog A New Year 2009 Counter To See Where My Visitors are From? free counters Subscribe me [arrow_dropdown.gif] Posts [subscribe-netvibes.png] [subscribe-yahoo.png] [icon_feed12.png] Atom [arrow_dropdown.gif] All Comments Click the picture to enter their site! Katie's C.I Centre My Videos Loading... Myself & My Team In Russia Richard & Me Me and My Idol (Gareth Gates) Useful Cochlear Implants websites Me and the squad in Germany Picture Window template. Powered by Blogger. Implant Blog - RSS Katie-Louise's Cochlear Implant Blog A Positive Journey with an Advanced Bionics Cochlear Implant! Friday, 11 December 2009 2nd Xmas with my Cochlear Implant 14 days till Xmas and still I haven't finished all my Xmas shopping. University has kept me ever so busy - we had this big Science project, which was interesting but hard and finally we have finished it. Feeling positive about the overall project results. Just one more week left at university then finally we get 3 weeks off, which is needed. So, what have I been upto over the past few weeks? well, I have had a few trip to Ropewalk Cochlear Implant centre; I had a slight problem with my cochlear implant - struggling to control the sounds and feeling uncomfortable in loud and quiet situation. Somehow when I'm in lecture and the room is quie, it feels like my teacher who is talking to the class that is stand about 5 metres away voice sounds as if she is right next to me and when the voice is loud, I tend to feel it more. Not only that, sitting in a canteen at university the loud background noises got over the top and I got so uncomfortable feeling and hearing it. So after seening my audiologist about it, it finally got sorted and now I have some new setting and some loudness has been clipped and have a programme where the volume is on lock to stop it turning it up itself which now after 2 weeks with the programme, I have felt so much better and is not seems to be having an problems at all - no more trips to the Implant Centre till my 2year appointment, I hope. Recently I went to the Ear Foundation Xmas Social and for the 2nd time I've been on the microphone again doing the Xmas Quiz. I could see the different in myself from last years quiz and this years quiz - I felt m ore confident and I didn't worry too much about my speech. My speech has improved alot - being at university and being surrounded by hearing friends all the time has really helped me though I do still need to work on the loudness of my speech and of course try and say all these biology words properly. Everytime I do a presentation and when I present it sometimes there a word that I struggle to say and sometimes I tend to stutter and give up quite easily and just say "that word" all my mates just laughs, which I don't mind becuase they all understand and my lecture is ok with it and it doesn't effect my marks which is a releif. I don't sign as much anymore so I think that maybe another reason why my speech as improved alot too. I have added a few pictures of me on the mike and of course you may notice the rudolph on my coil that I created - everyone loves it and have asked me to make some for them. It was a brilliant weekend and It was nice to have Kezia from AB popping in to see us all. I suppose some of you have noticed my last post "stolen bike" Still no news on that but is feeling positive that I will get it back. However ometime next year I'll be having a knee operation (sports injury) which I hope, the recovery time doesn't take to long - I don't fancy having another year out of sport like I did with my ankle and is hop-ing around everywhere in university on those horrible crutches. Now Xmas is coming up, I'll be spending my xmas hoilday down in Scarbrough along with the rest of my family and of course go to the church and see If I can keep up with the Xmas song and this year do better at following the lyrics. So thats it for me now, finally the weekend here and I am off out to ee a few friends and enjoy spending sometime with my family and maybe to a bit of online xmas shopping If I have time rather than going out in the cold spending ages searching to buy a certain thing. Enjoy the Xmas season everyone. Posted by Katie-Louise's blog at 20:49 19 comments: Links to this post Thursday, 3 December 2009 Styling Your Cochlear Implant (Getting Ready for Xmas) Hey all, Getting ready for Xmas?? I can't believe Xmas is just round the corner. Anyway, today I went to town today to finish off the last bit of Xmas hopping. Finally I got it all done and now I've gotta do the last part; wrapping them all up - I think I'd end up wrapping myself up ince I'm not good at it. Anyway while I went round town. I saw some Reindeers hair clips - I thought they look so cute then as I looked at them I came up with an idea - lets pimp out my processor into an christmassy Cochlear Implant. I knew I had a party to go to this weekend, so I thought, why not I'll just buy it and when I get home I'll see what I can do with them. So, instead of wrapping up the xmas present - I decided to turn the reindeer hair clip into a reindeer coil cover. check it out It is quite simple to make. All I did was buy the clips that has an xmas charactor on then cut down the clip where there is a small peice of metal left on the back of the reindeer, file the edges so it isn't harp to either scratch or cut something and then just stick it on your magnetic coil. So after making it, heres the result......... Now have fun and you try it. Please Note that this does not damage your processor! Merry Xmas everyone, katie-louise Posted by Katie-Louise's blog at 19:35 4 comments: Links to this post Thursday, 26 November 2009 Stolen Motobike! Note *This is not a CI related* Last night I had my motocross bike stolen. Thoses that lives in the Derby Are, Please help and spread the word to try and find my bike! STOLEN KAWASAKI KX125 (Team Green with Gold petrol cap and black pannels with the number "7" ) Stolen in Chaddesden Area (Derby) between 7:30 - 9:30pm If anyone seen it please call crime number; 0345 123 33 33 or 07852157548. Please help and spread the word! Posted by Katie-Louise's blog at 12:53 4 comments: Links to this post Wednesday, 18 November 2009 Questions and Unusual Coil Picture! Afternoon all, I just like to say sorry to thoses that has sent me an e-mail with your question about the cochlear implants in the past month or so and hasn't yet had a reply from me. I've been ever so busy at university working on a project and also had other things to do. o, I'll try and answer you question as soon as I am free. Anyway, thought I'd share this with you - I wouldn't say its a good thing, but everyone who has had a cochlear implant has bound to had omething stuck on their coil by accident or someone would put it on, on purpose. One night I was out at a friend house a few months ago and they decided to put a WKD bottle top on my coil -which made my coil stand out which to us WKD means WICKED to us! Enjoy the picture.... Anyway, i'd better be off - hope you all like the picture. I'll be updating my blog sometimes over the next few days on what I've been up to over past month. So, watch this space! Posted by Katie-Louise's blog at 14:34 11 comments: Links to this post Wednesday, 21 October 2009 Playing sports with your C.I Over the past few weeks, I have seen people asking about how do I wear my C.I while playing any sports ! Lets start with managing C.I - I do have small ears, and everyday I wear a small 'Huggie that attaches to my C.I which looks like this: Wearing a 'Huggie' with my C.I has made a big different to me. Even though I had a smaller T-mic, the implant would still fly off. So, wearing a 'Huggie' with your implant to wrap round your ears should help you Not only I wear a huggie while playing sports. With my huggie, I tend to wear a small sports material elastic band instead of those big headband. I place the band over my head by but putting the coil wire underneath. That also stops the implant from falling off and of course the coil doesn't come off as much as it used to. Placing the handband on top the coil wire doesn't affect the sounds coming through to your ears. I found that big material head bands tend to make a lot of rustling noise and it still made the implant falls off. I wear the band in all the sports I play all sort of sports such as football, tennis, running, gym etc. I would recommend it to other C.I users that are playing sports to wear it. Recently Advanced Bionics has been testing the new T-mic ear mould (pictured below) This can be another way to prevent your cochlear implant from falling off. Sometimes while playing sports, you don't always hear the whistle even if your wearing your implant, as you too busy focusing on the game. There has been times where I was playing football and I had the ball, continued to run and the referee would blow his whistle and I am still running with it. So, what should I do to prevent this? To help me from knowing when to stop, or when its a foul. I ask my referee to hold up a flag which he hold throughout the match. Every time he blows the whistle he would raise the flag up in the air too.; that helps me a lot. Sometimes when they are behind you and you don't hear the whistle or hear the flag you would still continue to run. This problem, I manage to solve with my team mates. I teaching my team some deaf awareness and ask them, if I had the ball and the referee blows his whistle, all my team mates would stop and stand still. That way, I can see why the game has been stopped because no-one moving around. playing as a team, you get players shouting my out my name when they want the ball, then when I don't hear it, it goes someone else. After I had problems with this situation. I taught my team mates to wave at me as they are shouting my name which made the teamwork much better. I There are loads of issue out there that can be dealt with. if you have any question about this post. e-mail me, hopefully I'll get back to you katie-louise x. Posted by Katie-Louise's blog at 09:13 9 comments: Links to this post Tuesday, 13 October 2009 C.I actor wanted! My mum has found this , great to know that they are looking to get an actor with a Cochlear Implant! BBC searches for CI recipient to play lead role in new drama The BBC is looking to cast an aspiring deaf (or hearing impaired) actress in the lead female role of new drama, The Silence. The girl should be aged around 16 to 19 and does not have to have had acting experience, but should have a lively and outgoing personality and be up for the challenge of working with a film crew and professional actors in Dublin. In the drama, the character has a cochlear implant and is learning to talk, so the girl should ideally have some speech. Shooting will take place from mid November to early January 2010. There will be a break for Christmas and New Year. The production is being made for BBC One by Company Pictures, who produce Skins and Shameless. It will be directed by Dearbhla Walsh, who has just won the Emmy Award for Little Dorritt. If you or anyone you know would be interested in being seen for this project please get in touch with us, and we'll forward you everything you need to know! Email us at hello@thedeafblog.co.uk. Posted by Katie-Louise's blog at 12:41 1 comment: Links to this post Monday, 31 August 2009 Summer Almost Over Can't you believe it that ten weeks of summer is almost over. I have just two week left before going back to university! uh-oh! I am looking forward to see all my uni friends again; missed them so much. I am certaintly not looking forward to the amount of work to be done in my 2nd year (lets hope it easy) I'd a great summer so far, I've done soo much and have been sooooo busy! I spend the summer working and had at least 2 weeks hoilday. I did alot of football coaching over the summer with young children and then spend a few weeks at a Deaf camp doing all sorts such as canoning, climbing, treking, cycling, swimming, visiting places etc. I have enjoyed it some much. Being a team leader gives you loads of responsibility and you can learn some much, looking forward to doing that again next year, but at a different place - I think next year I would be doing that in USA Not only I have been working. Advanced Bionics/Manchester cochlear implant centre have asked me to join the football teens day that they had in manchester. Good time, it was great to meet the young teenagers that had C.I and also enjoys football too.I had a bit of a kick around with them and then visited Manchester City Stadium. Learnt so much about Man City! Also, I was invited to a sports award and repesented Derby County for the 2nd time. 2 weeks of hoilday at Golden Sands with family and friends was awsome - It was nice to relax on the beach and enjoy the sunshine - the night entertainment was great too. Thanks to my implant, I am able to understand it more than I used to. I did have an accident with my implant - lost 2 batteries which fall out of Richard bag which had a hole in. Another call to the implant centre, grr. There was one night were the was a party in the dark, so we all had these light things. I ended up putting one light on my coil - check out the picture! Now I have only 2 weeks left, I have a few plans. I'll be visiting Advanced Bionics for a small meeting twice this month - and I'll be orting out my university books (I really do want another 10 weeks off) and erm.... Get my self back at the gym, had 2 months off and I've missed my gym routine. I love the workout and swimming. Football season has just started so back in the game again! Thats it for me now, check out the next post on how well I am doing with my ears Posted by Katie-Louise's blog at 09:57 No comments: Links to this post Newer Posts Older Posts Home Subscribe to: Posts (Atom) Click to Visit Advanced Bionics "A life with "AB" is just amazing! Without this device, I don't think I would be where I am now! " Click on the logo to find out more about Advanced Bionic!" Blog Archive Katie-Louise Tips Bloggers laura's medical journey merry christmas 2015 2 weeks ago Cochlear Kids 11 Years of Hearing 3 months ago Sound of Cochlear Implant 7 months ago Turn On My Ears! Progress Report - 2nd Grade 10 months ago Hear the Sound Whoops the Loop! 1 year ago Anna's Sound Journey by Freedom Cochlear Implant 2nd day with N6 - in London 2 years ago Loudest House on the Block We were challenged today at our teacher's inservice to put ourselves out there and WRITE..... Sarah's Cochlear Implant Trialling a Neptune SURROUND SOUND Vanderbilt Image-Guided Mapping Test Results Laurie's Dance with Sound HLAA July/August 2012 Magazine Cover 3 years ago My Son Tom Milo Debs' Hearing Journey Telephone 4 years ago Gina Sprenkel - My New Life of Hearing I'm a Saladaholic Silent Sail Happy New yEar 5 years ago Subtitles wedding photography Phone and Music with CI nearly 2years on Kirsty's Cochlear Implant NOT HEARING VERY WELL CI Borg Some Updates Bionic Wombat - Bilateral cochlear recipient July 2010 Amanda's Cochlear Implant Journey Amanda update-March 10, 2010 Kate's Cochlear Implant My final post? 7 months on CHRONICLES OF A BIONIC WOMAN Free Neckloop From Clarity If Attending HLAA Convention 6 years ago deafgirllovessoaps Today's Appointment The journey of Claire's cochlear implant 3-monthly tune up Dawne's CI Journey Wow 7 years ago the DeafBlog Followers Blog-Network NetworkedBlogs Blog: Katie's Cochlear Implant Journey Topics: CI, BSL, Disability Join my network Number of Visitors click for free hit counter code html hit counter Advice/Support From Experience Cochlear Implant users Click the logo to find out more! I was implanted in April '08. I have written about my experiences from times to implantation to the present day. This would be a useful resource for anybody who has been recently implanted or is going through the assessements. I suggest you to look back at the blogpost in April to the present date There are useful Links to other bloggers or CI related are shown at the bottom of this page! If you have any question? E-mail me bionic-katie@live.co.uk or Join Advanced Bionics UK facebook group ; click here Find me on Facebook! Katie-louise Bailey's Facebook Profile Top 15 Blog Award Top Cochlear Implants Blog A New Year 2009 Counter To See Where My Visitors are From? free counters Subscribe me [arrow_dropdown.gif] Posts [subscribe-netvibes.png] [subscribe-yahoo.png] [icon_feed12.png] Atom [arrow_dropdown.gif] All Comments Click the picture to enter their site! Katie's C.I Centre My Videos Loading... Myself & My Team In Russia Richard & Me Me and My Idol (Gareth Gates) Useful Cochlear Implants websites Me and the squad in Germany Picture Window template. Powered by Blogger. Implant Blog - RSS Katie-Louise's Cochlear Implant Blog A Positive Journey with an Advanced Bionics Cochlear Implant! Thursday, 23 July 2009 Talking in Groups Being in a group chats has always been hard for a deaf person. Lip reading one person to another person is like watching table-tennis following the ball and If you lost where the ball is, then you have just missed out on some information. Before I got implanted with this wonderful Advanced Bionic device, it was so hard to keep up . when I were in a group of hearing peers I used to lip-read all the time but always miss out some information and when I get tired of lipreading I miss more information. I used to hate sitting in groups and would prefer to talk to a friend 1-1. Sitting in groups, my confident wasn't to repeat. After having a cochlear implant, lip-reading has become alot easisr! I don't get tired so quick and I do get more involved. There are times where I don't understand what they are saying but I do have to say that I am much more confident asking them to repeat, I ain't afriad to ask. The only thing I find hard at the moment is university there is a tudent union bar where you sit and chill out with friends. The student union seats & tables are like a "C" shapes and when go with my group of friends to sit round thoses table. I've notices that everytime I s it in the middle - I always hear and keep up with the people on my implanted side and tend to miss some information on my non-implant ide. I do try and make sure I sit on the edge, making sure all my friends are on my implant side. It does help, but still not all places have "C" shapes seating. They can be round and that makes it worst when there is no edges to make sure everyone sits where your implanted side is. Maybe a 2nd implant would help in that situation? Has anyone out there notices the different in group situation after getting your 2nd CI done? It would be great if you could share your experince! Posted by Katie-Louise's blog at 17:07 6 comments: Links to this post Labels: advanced bionic contact network Wednesday, 22 July 2009 Total Wipeout Gameshow! Ever heard of a Gameshow that on every Satuday evening on BBC ONE? its involved: Crashes, smashes and hilarious mud splashes are on the cards as twenty contestants take on one of television's largest and most extreme obstacle courses. They journey across the globe to the purpose-built Total Wipeout course in Argentina to put their strength, balance and bravery to the test in the hope of winning the 10,000 pounds cash prize and being crowned this week's Total Wipeout champion. I have never really watched it and my dad always wanted to me to try and get on the show. He said he always like to see a deaf person on the how to raise the awareness that "deaf people can do anything except hear" He'd downloaded the application form the other day. He asked me to go for it, and so I did. I can't believe I actually posted the form off, am I mad? I am an outgoing person and always up for a challenge. So, I thought why not and give it go. After watching a bit of the show on Youtube. I thought If I ever did do the show - it would be good to tell people what a cochlear implant is. It could make Advanced Bionic more visable and maybe more people would be aware on a cochlear implant is. Another question my dad ask me. If I ever won 10,000 pound, what would I spend it on? I said I would pay to have a second cochlear implant done and my dad was just shocked and couldn't believe I would choose to have that done instead of something esle like a new car or something. Having a second implant would mean alot to me. Waiting till the N.I.C.E report change in 2011 is a long time to wait and it could take forever to appeal against it. So, it worth a try. If I fail to make it the gameshow there always another way round to it. Better luck for me! Posted by Katie-Louise's blog at 19:07 3 comments: Links to this post Labels: total wipeout Advanced bionic Where to get support and advice? Looking for advice and support to help you with decision to get a cochlear implant or not? How about checking these useful sites; Advanced Bionic (the name of my cochlear implant) Contact Network Ear Foundation Cochlear Implant User Group British Cochlear Posted by Katie-Louise's blog at 10:16 No comments: Links to this post Sunday, 19 July 2009 Contact Network! Last weekend, I travelled all the way down to Cambridge to join the Contact Network group. Friday evening they had a social meet up with a BBQ. I have never really met any of the contact network group before apart from Tiz who I have met at the EF and the two other AB users who I have met during my assessment at the Ear foudation to help me decide wheather I wanted a cochlear implant or not. Oh and there was Elaine from CIUG who I have spoken to loads of time asking her tons of question about the implant. I didn't realise they would be there When I got to the Mellor Centre, I signed in and went to my bedroom and dropped my bags off. The time we got in our room, it was almost time to join the crew. Richard and I were walking towards the study centre, well we were trying to find the place and as we got near the building, there was a lady walking by waving at me saying "Hi katie-louise" I were like, erm... "Hi" (I didn't have a clue who she was) Untill I got close and I realise after she told me who she was. Michelee has been reading my blogs and so thats how she knew me. (It was great to meet you Michelle) We both walked up to the study centre along with my partner Richard who were also with us for the weekend. As soon as we got into the study centre, Tiz was already by the door way - so, that was alright for me, as there was someone esle already knew - Tiz took control and introduce me to his boss (nice to meet you boss :-) After I got a drink, I spotted my great old audiologist that did my assessment to get a cochlear implant and who has left me for her new job just before my switch on, but hey at least shes working for the 'RIGHT' company, it was great to catch up with kezia again. (hopefully see you again sometimes) The room was full other AB users. I managed to get chance to talk to most of them. they all seem nice and it was great to know all of their experince too. we also had a good game on the Wii, playing against to the other AB users was so much fun. While we were eating up our dinner, Tiz join us and was asking if kezia has told me something. Kezia and Yvoone soon jumped in quick and told Tiz to shush. They had something exciting to tell us the next morning. I kinda guess what it was, so thanks tiz for the hint :-P They all know how crazy I am with the colours on my implant and what I did to one of the cover (yes, spraying it pink) Thats me and I love to stay in fashion, not just with clothes, but with my implant too. The next morning, I was ment to go for a run, but after seening the meeting was gonna be from 9ish till 4. I thought I better not and take the weekend off. Sunday morning, I did actually went out and did the extra hour run to make up from what I lost. Breakfast was nice, so there were more time for us users to enjoy chatting awaying. Finally after breakfast it was time to join the group for a meeting. The people who worked for AB/contact network had lot of presentation to show us - its was all about the history, achievements, future of AB and many more. I thought it was so interesting. I have learnt so much, and still I can't believe how much I didn't know even though I had the cochlear implant for a year and there is still so much more to learn. I was actually impressed with the future equipments for the processor etc - next on my list I want a pink, hehe :-) and also other things they have such as the new T-mic earmould that we're going to try out. Poor kezia haven't done made and ear mould for over 10 months, but she has done so well - It was a good job I learnt how to lip-read, so I could keep up with what the others were talking about while my implant were off. After having the ear mould made, I also made a bouncing ball with the left overs lol. I actually gave that to Nicolas, who is stopping at my families home to play with. The music ession was also interesting. I am not really into music that much. I only know a bit of Duffy and The Saturdays because I quite like the beats they played and my sister helped me with the lyrics etc. The CD software they have and what they showed us seems to be so interesting. She played a few tracks to see if we could guess them and we had to imagine whats happening during that sounds. I thought that was really userful so I am gonna give that a try and then make a post on what I think about it. (watch out for the next post) In the meeting room, they had a quite a few instruments out, so, myself and the other AB users decided to play with them and make some sounds. Some of thoses instruments I have never heard before. Some sounded good and some were awful. we had fun with them though. We made sooo much racket and I felt sorry for kezia, tiz and the others - I bet we were getting on their nerves. They must be so glad when we had stopped playing them lol. The Future of AB - justs gets better! I am impress on what they are working on! I am looking forward to help more, and go to more of there meetings! A big thanks for the AB crew - Hopefully see you all again so oon! Posted by Katie-Louise's blog at 15:19 2 comments: Links to this post Saturday, 18 July 2009 Using The Phone! Using a phone can be difficult for some C.I users. Some can learn quite quickly, some take a while. But for me, I am still not 100% confident and yes, it has only been a year since I've been implanted. It could take some users months or even years till they could get better, it does take practice. Without practice you probably wouldn't reach the next level unless you've tried. Every users is different, you can't compare yourself with another C.I users. - its all to do with you history of deafness, or sound menmory! Just because you know someone who had the implant around the same time as you, or maybe a few months later and can use the phone quite well, it doesn't mean they are better than you, a nd your not going to get to that stage. The whole idea of the rehab process is to practise and not to give up. I once tried calling my granddad at Christmas for the first time and at the time I have only had my implant for six months.. I didn't actually hear him very well or understood him perfectly. My mum stood next to the phone and all I could hear is like a foreigner is talking to me and you don't understand the language. When I first heard voices, that was also like that too. After trying with my grandad at christmas, and it wasn't too successful, it didn't stop me from practicing. I decided to try something differet instead such as doing more listening practice without lip-reading. Doing something different does give me a chance to improve my listening skills to listen without lip-reading. My lipreading skills were so good before being imlpanted. And thats one of the good thing about being able to lip-read was it able to make things a little bit easier by reading their lips and remenbering how does that word sound ready for next time I should be able to hear that word without lip-reading. I do practice alot with my mum and sometimes he ask if I would like to try again on the phone. At some point I do make some excuses saying nah - I'm off out, which I do have to admit that I just weren't ready and wasn't confident enough to try it. My mum were ok with it - my mum is the sort of person who likes to try and help and also try to encourage you to practice more. That is a good thing about having someone round to help you. I mean, without the upport I got, I wouldn't think I would get this far to be able to hear ome speech without lip-reading. Just only a few weeks ago, I were away from home working, coaching young children and to hear from my parent, I would just text them too ee how they are. While I were away, I did miss my mum's voice. From where I was staying, it would take ages for me to drive back home and pop in to say hello. So, in the end I sat in my room picked up the phone, thinking to myself should I ring my mum or not. I was getting all these 'What If I can't hear her' in my head. In the end, I thought, I ain't gonna know if I can do it unless I have tried! I decided to dail that number and just ring it.... Finally I could hear the ringing tone and at that moment I knew that anytime now she would picked up and say "hello". When I heard that hello, it was just so emotional. I do mis s her voice while being away from home. During that phone call I had with my mum, my mum spoke to me like she normally does to me when we are face to face. At a normal pace, not to slow or to fast. I was able to pick out the main key words on what she were saying. There were a few time where she had to repeat her self untill I understood what is being said. I were so happy that I was able to hear her voice and yes when I got home, my dad did say she were in tears. My mum was so happy that I have given it a try. After this phone call, even though I still need some practice. I have now decided to try it more often and like others have said, without practce you won't get far. So, hopefully this time next year, who knows, I could be talking to a few more people, or maybe still working on it. No matter what stages you are at, you just need to practice. So, for thoses of you who are new to using the phone with your C.I. Don't give up, it does take time! Posted by Katie-Louise's blog at 21:09 3 comments: Links to this post Friday, 10 July 2009 Ear Foundation BBQ Last weekend, there was a big Ear Foundation BBQ held at Sue and Brains house. Sue's garden were filled with stalls, bouncy castles for the kids and plenty of competitions to take part in. The event went so well, the weather was so nice and it was great to meet even more people with Cochlear Implant! It is nice to see more and more implant users around my age and to share each of our experience! So, I would like to say a BIG thanks to Sue and the Ear foundation crew for organizing it! The Ear foundation is like my second family - they're always so upportive and they have helped me with a load of things! I look forward to attend more of your events. If you need any advise or any upport with anything to do with Cochlear Implant I would recommend you all to check out there site on www.earfoundation.org The Ear Foundation is now on facebook, why not sign up and be a member - you'll recieve all the latest news and make new friends online. Anyway, thats it for me. This week I'll be chilling out seening friends catching up with what I have missed and new week I'll be driving up to cambridage to join the Advanced Bionic Contact Network meeting. So, looking forward to meeting new people there! Posted by Katie-Louise's blog at 14:37 18 comments: Links to this post Labels: advanced bionic, contact networks, Ear Foundation Thursday, 25 June 2009 Exam's Are Over! Yahoooo! Finally It's the start of summer! No more University, waking up early and of course NO more homework! Over the past few weeks I've been so busy and not been able to post up a blog because I was to busy making sure all my assignments are up-to-date and I spent alot of my time revising ready for my exams. Well, exam's are finally over! This year was the first time I ever done an exam with my implant. Every year, the lecture always tell everyone to sit quietly at their desk, no talking and to fill in all the question sheet. For a deaf person, who couldn't hear a thing have no idea how noisey they are. I remenbered last year, I sat down and when I finished my question sheet I left my desk with a big loud screeching noise which was coming from my chair, everyone did turned and looked at me! How embarrasing This year has been totoally different! Thanks to my implant, I was able to hear myself and was able to BE quiet. In the exam room, everything was ment to be so quiet, everyone WAS quiet but just one thing that wasn't and it did distracted me right through the exam. I wanted to hoot it! It was sooooooo ANNOYING! Eventually I did had to take my implant so I could get some peace and concentrate! Can anyone guess what it is? Yep, it was a clock, how noise can they be? can't they be any quieter? Big Ben in London is so loud, but it on chime when the big hand gets to 12'0clock but this small clock in the exam room TICKs loud every econd! Ah, right now, I'm just trying to learn to IGNORE the sounds! Any tips on how to avoid listening to sounds that I don't want to hear? Posted by Katie-Louise's blog at 13:23 14 comments: Links to this post Newer Posts Older Posts Home Subscribe to: Posts (Atom) Click to Visit Advanced Bionics "A life with "AB" is just amazing! Without this device, I don't think I would be where I am now! " Click on the logo to find out more about Advanced Bionic!" Blog Archive Katie-Louise Tips Bloggers laura's medical journey merry christmas 2015 2 weeks ago Cochlear Kids 11 Years of Hearing 3 months ago Sound of Cochlear Implant 7 months ago Turn On My Ears! Progress Report - 2nd Grade 10 months ago Hear the Sound Whoops the Loop! 1 year ago Anna's Sound Journey by Freedom Cochlear Implant 2nd day with N6 - in London 2 years ago Loudest House on the Block We were challenged today at our teacher's inservice to put ourselves out there and WRITE..... Sarah's Cochlear Implant Trialling a Neptune SURROUND SOUND Vanderbilt Image-Guided Mapping Test Results Laurie's Dance with Sound HLAA July/August 2012 Magazine Cover 3 years ago My Son Tom Milo Debs' Hearing Journey Telephone 4 years ago Gina Sprenkel - My New Life of Hearing I'm a Saladaholic Silent Sail Happy New yEar 5 years ago Subtitles wedding photography Phone and Music with CI nearly 2years on Kirsty's Cochlear Implant NOT HEARING VERY WELL CI Borg Some Updates Bionic Wombat - Bilateral cochlear recipient July 2010 Amanda's Cochlear Implant Journey Amanda update-March 10, 2010 Kate's Cochlear Implant My final post? 7 months on CHRONICLES OF A BIONIC WOMAN Free Neckloop From Clarity If Attending HLAA Convention 6 years ago deafgirllovessoaps Today's Appointment The journey of Claire's cochlear implant 3-monthly tune up Dawne's CI Journey Wow 7 years ago the DeafBlog Followers Blog-Network NetworkedBlogs Blog: Katie's Cochlear Implant Journey Topics: CI, BSL, Disability Join my network Number of Visitors click for free hit counter code html hit counter Advice/Support From Experience Cochlear Implant users Click the logo to find out more! I was implanted in April '08. I have written about my experiences from times to implantation to the present day. This would be a useful resource for anybody who has been recently implanted or is going through the assessements. I suggest you to look back at the blogpost in April to the present date There are useful Links to other bloggers or CI related are shown at the bottom of this page! If you have any question? E-mail me bionic-katie@live.co.uk or Join Advanced Bionics UK facebook group ; click here Find me on Facebook! Katie-louise Bailey's Facebook Profile Top 15 Blog Award Top Cochlear Implants Blog A New Year 2009 Counter To See Where My Visitors are From? free counters Subscribe me [arrow_dropdown.gif] Posts [subscribe-netvibes.png] [subscribe-yahoo.png] [icon_feed12.png] Atom [arrow_dropdown.gif] All Comments Click the picture to enter their site! Katie's C.I Centre My Videos Loading... Myself & My Team In Russia Richard & Me Me and My Idol (Gareth Gates) Useful Cochlear Implants websites Me and the squad in Germany Picture Window template. Powered by Blogger. Implant Blog - RSS Katie-Louise's Cochlear Implant Blog A Positive Journey with an Advanced Bionics Cochlear Implant! Monday, 11 May 2009 Wow, take a look at this! Kirsty, a friend who lives about 45 minutes away had has her cochlear implant for nearly 6 months now. She was born deaf and had wore hearing aids until April 2007 when she had lost all her hearing in both ears. She is very musical and after losing her hearing, she felt so sad to not able to hear her favourtire band, ABBA. After Kirsty contacted me online, she had ask me loads of quesiton about my experince and how the implant has helped me. We met once before her op and I could see how hard it is for her. Kirsty, then decided to go for an Advanced Bionic cochlear implant in Novemenber 2008 and after visiting her on the day she had the op, she was so brave he went ahead with it despites being very nervous and nearly turn it down. 3 months after the operation, I visited her again - Kirsty has changed and improved alot after the operation, she even listening to her favourites songs on the Ipod and I can't believe how quickly she has learn to hear .... she is even now playing on her piano, check this out. playing 'Abba - Mama Mia' When I watched her playing that, I was like, wow - she really is good! [EMBED] video Kirsty playing mamma mia and myself watching her. Posted by Katie-Louise's blog at 13:54 4 comments: Links to this post Who is right? Last weekend, Richard (freedom user) and I were sitting in the conservatory relaxing and talking about anything that stops us from getting bored. All the sudden Richard heard an Aeroplane and asked me I I could hear that. I heard it, but it sounded like a Helicopter. We were both were disagreeing with each other about what we heard. I was telling him, "no its a helicopter" and he was "no its a plane" which went on and on, in the end we both decided to go outside to find out what it really was and see who was right. And guess what - we were both shocked - we saw both a helicopter and an aeroplane and we were just shocked that neither of us were wrong. It’s weird how we both could hear something but a different thing. So, that was our weirdest moment. Posted by Katie-Louise's blog at 13:36 1 comment: Links to this post Friday, 1 May 2009 This is real, this is sound! Hey all, Hasn't it been a while since i have last posted? I did get lost, but here I am now - I just had a busy month - and a busy week! Next thurs, I'll be going for my one year C.I review. Can you believe how quick this year has gone! It makes me feel old already! Anyway, I thought i'll share this. Have you all ever heard of camp rock? well, its a film I watch a few weeks ago. I know its for teens but still I am a big kid and would watch anything that is good. There Camp rock has a song called "this is real, this is me" and I really liked the song. So, one day I got that bored after spending a week off uni being ill . I decided to see if could change the song that is CI related. Here it is: tell me what you think? Living in a silent world Didn’tunderstand Do you know what is like Not to hear a sound I have this thing right inside of me I’m gonna let it show, it’s time To let you know To let you know... This is real, this is sound That is how I’m supposed to hear now that the device, is how I hear Now I’ve found, how I hear There's no way to hold it in No more hiding what I wear This is me To dream about a life with all the sound you got Even though it seems, like it's too far away without that device I don’t know what you hear It’s the only way..... You're the voice I hear inside my head The reason how I’m hear I need to wear it I gotta wear it You're the missing piece i need to put sound inside of me (You're the missing piece i need to put sound inside me) This is me, Yeah (You're the voice i hear inside my head, the reason how I hear) There’s no way to hold it in anyway, let me know what you all think. After doing this. This makes me thing there should be a music video out there that should increase cochlear implant awareness, there are still lot of people out there that doesn't know what a cochlear implant is. that is it for me, watch out for next weeks post with the BIG 1 year results! katie -louise x Posted by Katie-Louise's blog at 20:19 5 comments: Links to this post Wednesday, 25 March 2009 2nd implant? 10 months and I am doing so well, I still can't get over of what I have learnt over the past 10 months -Everyday there always a new sound and always more to look forward to There is only one thing now I really would like , which I have been thinking about in the last few weeks, now that I have done so well listening through one implant, will I do the same if I had a second implant? A second implant would be nice. I mean, I hear so well in my left but the only thing is I can only hear most of the things on the left and my right side just feels SO deaf and doesn't hear anything, it feels so blank; I don't see the point in wearing a hearing aid I know a 2nd implant won't make you hear any better, but it be nice to hear from both direction and maybe it give me a better sense of where sounds comin from. So, now I am hoping to have a 2nd implant to become 'Bilateral' becuase of the N.I.C.E guidance, I think here in the UK, it would be hard for us to fight for the second one. So, right now I am unsure which direction I should take, wheather I should wait a while untill the N.I.C.E has changed gardians or should I appeal for the funding right now? I thought, If I was to have a 2nd implant while I am still at early tages, I think it might be better as my brains will continue to learn , I am not saying it will stop (I hope not) but getting another implant at this stage might be easier for me and gives me time to learn before I finish university and go out in the real world and teach. thats it for me, fingers cross, I get the 2nd one some day! x Posted by Katie-Louise's blog at 18:54 9 comments: Links to this post Music - Sounds Inspiring Yesterday I had an interesting evening. I went to the sound inspiring event which was organised by Ear Foundation and Advanced Bionic. (the implant brand I have) The event went so well, and it was concert by musicians who have ensory and it inspired me so much. I have never seen a deaf blind man who is able to play his piano and guitar and also group of deaf teenager having there own band called the Deafness. which totally amazed me, it really does show a good example to others the deaf people can do anything except hear like hearing people do. I have learnt so much while I were watching the panio, flute, drums guitar and xlepone. It was all new to me. I never to identify instrument and the different in them. . After tonight. I have able to indentify the low and high pitch and also to tell which instrument was playing. I did find some hard to listen to and when they were all playing at the ame time. when the flute were playing I was unable to hear the piano untill the flute has paused. I weren't too keen on the flute. I mean, the flute was played at a high pitch and each note gets higher and higer which felt like my implant is about to blew off. It was nice to take part when we all got these free Advanced Bionic drumsticks. That taught us to listen and to try and follow the patten Not only there were music, there were dancers aswell, one of the dancers had a good sense of humour while dancing which made us laughed So, now I decided I do want to take some keyboard lesson - I won't be as good as the people I have seen, but it be nice to be able to play a ong - maybe get to learn how to play Gareth Gates, :-) o, what an evening, hopefully there will be some more like that! Posted by Katie-Louise's blog at 18:32 No comments: Links to this post Thursday, 5 March 2009 Hearing from Distance! March already? Its nowbeen nearly 10 months since I have been implanted. I can't believe how quick the year has gone; I guess life would be alot faster if your enjoying the new hearing journey. In may will be my one year anniversary. So, I am looking forward to celebrate my one year journey by posting up a new video on this blog <- Anyway. I have noticed that I have been hearing alot of things that is quite a distance away. Yesterday, In university I was in class and my classroom was right on the very top floor (11th floor) I were sitting right near the window because sometimes I like to see the outside when I'm thinking or when I want to be nosey ;-) while my lecture were talking about 'Shakespear' I heard a beeping sound that was very quiet and it was repeating for some time. The sound distracted me from listening and I ended up looking around to see what it was and still couldn't figure out where it was coming from. So, I asked my mate whats that beeping sound. She said it was a truck that was reversing outside as there were some building work going off outside the University. I was amazed on how I could hear that. Also, now I am an aunty, I have been babysitting my little nephew who is now 6 weeks old (he growing quick) anyway, while babysitting. I asked Richard to keep an eye on him while I'll go a make a bottle and I then quickly go upstairs to fetch his bibs etc. I could hear him crying from a good distance away. Babies are loud when they cry. Sometimes it is nice to switch your implant off when you don't want to hear him. I remenber 3 month post activation, I was able to turn round if someone calls my name out only if they were close but now I can do it while they are in another room. I do sometimes get confused at home when my mum shouts "lady" my dog which made me think my mum is shouting "katie" Thats it for me typing away now. I better shoot off to my 2nd lecture. xx Posted by Katie-Louise's blog at 12:04 15 comments: Links to this post Tuesday, 17 February 2009 RAM FM! (radio) new CI moment! Hey, I'm still around, and yes, I haven't posted for a short while; doesn't mean I've forgotten about my blogs. I've been soo busy helping my sister with her little son, dylan (hes growing quick) and of course studying at uni <- these assignments from university really do take up all your free time. Anyway, recently I have been travelling to a few places with family and friends - while traveling, someone in the car always shouts "put the radio on" so, while driving I decided to put the radio on. I don't normally listen to the radio and not to bothered with it. Well, for some reason, I decided to give myself some listening practise rather than ignoring it. becuase my hometown football team were playing, my brother and dad want to listen to it to see how well they are getting on. I know all the Derby players names and decided to see if I could pick out any of there names that been called out. I did great and manage to pick out a few names which put a smile on my face, not only that I heard the man on the radio saying "102.8 Ram FM" <> o, thats something new and hopefully, i'll continue with the practise and see what esle can I hear! thats it for me now, i better shoot off and get some training done, what this space for more updates! take care x Posted by Katie-Louise's blog at 14:41 1 comment: Links to this post Newer Posts Older Posts Home Subscribe to: Posts (Atom) Click to Visit Advanced Bionics "A life with "AB" is just amazing! Without this device, I don't think I would be where I am now! " Click on the logo to find out more about Advanced Bionic!" Blog Archive Katie-Louise Tips Bloggers laura's medical journey merry christmas 2015 2 weeks ago Cochlear Kids 11 Years of Hearing 3 months ago Sound of Cochlear Implant 7 months ago Turn On My Ears! Progress Report - 2nd Grade 10 months ago Hear the Sound Whoops the Loop! 1 year ago Anna's Sound Journey by Freedom Cochlear Implant 2nd day with N6 - in London 2 years ago Loudest House on the Block We were challenged today at our teacher's inservice to put ourselves out there and WRITE..... Sarah's Cochlear Implant Trialling a Neptune SURROUND SOUND Vanderbilt Image-Guided Mapping Test Results Laurie's Dance with Sound HLAA July/August 2012 Magazine Cover 3 years ago My Son Tom Milo Debs' Hearing Journey Telephone 4 years ago Gina Sprenkel - My New Life of Hearing I'm a Saladaholic Silent Sail Happy New yEar 5 years ago Subtitles wedding photography Phone and Music with CI nearly 2years on Kirsty's Cochlear Implant NOT HEARING VERY WELL CI Borg Some Updates Bionic Wombat - Bilateral cochlear recipient July 2010 Amanda's Cochlear Implant Journey Amanda update-March 10, 2010 Kate's Cochlear Implant My final post? 7 months on CHRONICLES OF A BIONIC WOMAN Free Neckloop From Clarity If Attending HLAA Convention 6 years ago deafgirllovessoaps Today's Appointment The journey of Claire's cochlear implant 3-monthly tune up Dawne's CI Journey Wow 7 years ago the DeafBlog Followers Blog-Network NetworkedBlogs Blog: Katie's Cochlear Implant Journey Topics: CI, BSL, Disability Join my network Number of Visitors click for free hit counter code html hit counter Advice/Support From Experience Cochlear Implant users Click the logo to find out more! I was implanted in April '08. I have written about my experiences from times to implantation to the present day. This would be a useful resource for anybody who has been recently implanted or is going through the assessements. I suggest you to look back at the blogpost in April to the present date There are useful Links to other bloggers or CI related are shown at the bottom of this page! If you have any question? E-mail me bionic-katie@live.co.uk or Join Advanced Bionics UK facebook group ; click here Find me on Facebook! Katie-louise Bailey's Facebook Profile Top 15 Blog Award Top Cochlear Implants Blog A New Year 2009 Counter To See Where My Visitors are From? free counters Subscribe me [arrow_dropdown.gif] Posts [subscribe-netvibes.png] [subscribe-yahoo.png] [icon_feed12.png] Atom [arrow_dropdown.gif] All Comments Click the picture to enter their site! Katie's C.I Centre My Videos Loading... Myself & My Team In Russia Richard & Me Me and My Idol (Gareth Gates) Useful Cochlear Implants websites Me and the squad in Germany Picture Window template. Powered by Blogger. Implant Blog - RSS Katie-Louise's Cochlear Implant Blog A Positive Journey with an Advanced Bionics Cochlear Implant! Tuesday, 3 February 2009 Adult CI Users Day - Telephones Last Saturday, I went to a workshop at the Ear Foundation! Like before, we had 30 minutes of any choices of session we chosen. I went to: Richard - Talk more about Advanced Bionic Cochlear Implant. This session was very interested. We talked about the futures techonologys and also ask any questions about the AB processors. It good to hear that they looking at future processors that have smaller batteries and also more choices of colours (i'm excited, and want them). They are now looking at making a pink processor! Wow, it be good. Andrew - Talk about equipments they you could try when using the phone/mobile I liked this session, I tried out this bluetooth device which I tried out for the first time. The blue device called 'Geemarc CL Bluehook ' which you can buy from 'Connevans' As I tried it, y ou didn't need to change hooks or anything, you only had to turn you setting to a loops channel and place the hook over your ears. While I tried it, Andrew tried phoning me and I only had to press answer on the phone and then just listen through the blue tooth device. It sounded quite good because I were in the same room he sounds robotic and because I were lip-reading him while he were talking there were a bit of a delay on the voice I hear. So, I decided to go out the room and see if I could hear him then. Sue were out of the room with me and andrew were in the other and decided to ask me a question to see if I could get what he aid. He asked me " how long it took you to get to the Ear Foundation" I heard what he said and ask sue and she nodded yes, and I answer back. It was great to hear out of that and now I am thinking of buying one once I have more practise with talking to other people on the phone. Maria - Telephone Commuication tips This session was all about how to communicate better on the phone and how to make the better of it. It was good practise by using these useful role play scripts. I tried out talking on the phone to Maria while she was out in another room and had to listen out what she said and talk to her back. I managed to do it and while following the cripts, I manage to pick out some of the words in the sentences. It a good way of learning. Here one script and give it go! Sam; Hello? John: Hi! Its John. Can I speak to Sam please? Sam: Hi John! It's me! How are you? John: Fine thanks. Are you coming over on Thursday? Sam: Yes. What time do you want me? John: How about 8pm. Sam: That;s Great. I'll bring a bottle of wine. John: Sounds better by the minute. Sam: See you Thursday then. Bye John: Bye. Using this Scripted conversation really does help and the more practise you do the better you'll get. I am now practicing more and hopefully i'll get better at it. Anyway after a successful day at the Ear Foundation, some of us decided to go out for a Chinese meal to help celebrate Abi's birthday. We all had a great evening and are now looking forward to the next upcoming Ear Foundation dates! Me and Debs who also has an AB processor Posted by Katie-Louise's blog at 21:49 3 comments: Links to this post Monday, 2 February 2009 Fun in the Snow! Today, where I live has a big snow fall. We don't normally get that much snow that often and today has been a biggest snow fall we had in years! Its amazing to see how muc noise we make while we're walking on the now. all we hear is crunching sounds on every footsteps we made. Richard and I had some fun in the garden and made a few snowman, check them out! Posted by Katie-Louise's blog at 17:06 No comments: Links to this post Sunday, 1 February 2009 CI Fashion As most of you know, I am a huge fan of fashionable clothes and that I like to make sure everything matches and look right. I also like to make sure I match my CI colours to my clothes too. I know, I'm crazy but I love it. Advanced Bionic do quite a lot of colours, but there are some colours they don't do like, Pink, Red, Yellow etc So, after my favourite colour case broke 'purple' I had other colours but it wasn't enoug h to match and I had these plain colours which I haven't yet used because they were boring to me. Somehow after telling dad that I wish AB would do more colours, dad came up with an Idea and said I know just what might help you. Dad uggested us to go an Art & Craft shop and buy some plastic sprays of the colours I wanted and he said they he will spray it and see what the results would be. I thought It was a good idea and had to ask my mate manda if she know where the shop is. After visiting the shop, I brought Pink, Red, Gold, Yellow, While, Bright Green, Light Purple spray which coz about £2 each per a can and decided to spray the boring plain colours I had and what I have not yet used and guess what? It worked! Dad sprayed a nice pink colour on one of my CI covers and It looks just how they make it. The pink matches the top Im wearing and now I finally have a pink, red, gold, yellow, bright green, light purple covers alone with all the other colours I have. You see below on other pictures that I like to match my CI colours to what I am wearing: Posted by Katie-Louise's blog at 00:18 12 comments: Links to this post Wednesday, 28 January 2009 New family member! Argh! How noisey? Hey all, I haven't forgotten about the blogs, I am still around. I have been soooooo busy just laterly and last week was the most exciting and nervous week for our family. My sister had given birth to a baby boy and called him Dylan. Yep, I am now 'Aunty Katie-Louise! argh! that makes be feel old but I please to welcome him into the family! I have never really been with young babies since switch on. I have never actually heard them cry in person apart from seening them cry on tv etc. I mean, I can't believe how much Dylan has been crying over the past week - He would only cry if he wants feeding, changing or if any of us disturb him in his sleep. It the first time I heard cry and I'm glad I am able to hear my cute little nephew which was a pleasure to hear! After hearing Dylan cry alot, I do tend to turn my implant right down or go into another room for a bit till my sister or his dad sort him out. I find it a bit hard to ignore which I am gonna try my best to get used to it. I must say, I am sooooooo glad I don't hear anything at night time with I put my own implant to bed, though I do feel sorry for the others. hehe Posted by Katie-Louise's blog at 22:35 19 comments: Links to this post Saturday, 17 January 2009 Signed Video Songs Thought it be nice to share some signed videos by BSL (British sign language) users! Have fun watching and listening ;-) Sugarbabes - 'Hole in the Head' [EMBED] Will Young - Evergreen Whitney Houston - I Have Nothing Posted by Katie-Louise's blog at 22:23 6 comments: Links to this post Thursday, 15 January 2009 online Video & Audio chat - new CI moment! Last night I went to my friends house who lives about 5 minutes away. While I were over at her house. Kara and I decided to go online and try out skype and oovoo video chat with Jennifer (Amanda's Stepmother) we planned to go online at a certain time as USA and UK hours are different, Kara and I were so keen to learn ASL and so that Jennifer could be our online ASL teacher. It was 7:30pm and 11:30am over there - When we manage to sort the video chat and saw Jennifer. When Jennifer first saw us on the video chat, Kara and I were signing away and the first thing Jennifer said was "woah, I don't even have a clue on what you are saying" we both laughed as it would be the same for us if Jennifer signed in ASL. As we got going, Jennifer taught us the Alphabet, Animals, Numbers and ome everyday signs. It was really interesting to learn, I mean, BSL (British Sign Language) and ASL (Amerincan Sign Language) are completely different and we both wanted to learn ASL and learning ASL would help us when we both go over USA this summer to meet other deaf. As we tried them, some were quite difficult and some were quite funny! While we were practising, Jennifer said she could hear us laughing and giggling away and she asked if she could hear her. We couldn't hear Jennifer because out laptop was set as mute. Not many deaf people would have it on and wouldn't bother changing it. So, we both decided to put the volume on and as we did it, we didn't realise that the volume was on full and when Jennifer said hello, we both was shocked and put our hand over our ears. It was sooooo loud and kara had to turn it down quick. When we heard Jennifer talking we could also hear alot of background noise coming from where Jennifer is. We could hear, Jennifer typing to us, wind as she was outside and cars passing by as she mentioned she lives on a corner and also we could hear goldy her cute little dog That was all new to me, I never heard from a laptop in a video call. I would normally use it and would signing away to my friends on there but never had the audio bit on. I decided to say "Hello" and Jennifer could also hear me too. I was impressed when she said it was clear :-D Jennifer also decided to sing to us to give us a listening practise. She sanged Twinkle Twinkle little star, lol It was good but sooooooo funny because she wanted to make sure no-one was walking past, haha. Not only that Jennifer were talking to her Husband, Gonzalio. While Jennifer were talking to Gonzalio, we were listening and her accent was ooooo American. We manage to pick out some words on what she said and typed it and Jennifer said that was right. After that, joseph also joined in the video chat too and we could hear jospeh talking too. We were able to tell there two 2 people talking as each voice sounded different. So, what a brilliant evening and another new C.I moment along with some fantastic Sign and look forward to doing the video chat again ometimes. To those that don't know Jennifer, she also has a blog about cochlear implant as her stepfdaughter has one check out there blog - http://jenniferbrunoconde.blogspot.com/ Posted by Katie-Louise's blog at 18:22 8 comments: Links to this post Saturday, 10 January 2009 I.T Independent (new C.I moment) Every Tuesday at university I have an I.T (information Technology) lesson. Every lesson we have a task to do and every task we do, we bound to print something out. o, Last year at college, I wasn't able to hear the printers printing and my work. If i was to print something and instead of me walking to the other side of the class room to check if it is printing, I just ask my interpreter who is with me if they could hear it and when they do, I walk o ver to collect the printed work. This year changed has changed. I do have an interpreter in lecture with me and instead of me asking if she/he could hear the printer, I listen out for myself and when I hear it I go over and collect it. o, more independents and it great to hear the printer *thumbs up* The only thing I don't like about I.T lesson is when you sit down doing you work and while your doing the work, all you could hear is everyone typing and tapping the keywords. It tend to annoy me,but its good to hear it, and I am aware what it is. I just trying to learn how to avoid these sounds while doing work without cheating (taking the implant off) Posted by Katie-Louise's blog at 19:30 2 comments: Links to this post Newer Posts Older Posts Home Subscribe to: Posts (Atom) Click to Visit Advanced Bionics "A life with "AB" is just amazing! Without this device, I don't think I would be where I am now! " Click on the logo to find out more about Advanced Bionic!" Blog Archive Katie-Louise Tips Bloggers laura's medical journey merry christmas 2015 2 weeks ago Cochlear Kids 11 Years of Hearing 3 months ago Sound of Cochlear Implant 7 months ago Turn On My Ears! Progress Report - 2nd Grade 10 months ago Hear the Sound Whoops the Loop! 1 year ago Anna's Sound Journey by Freedom Cochlear Implant 2nd day with N6 - in London 2 years ago Loudest House on the Block We were challenged today at our teacher's inservice to put ourselves out there and WRITE..... Sarah's Cochlear Implant Trialling a Neptune SURROUND SOUND Vanderbilt Image-Guided Mapping Test Results Laurie's Dance with Sound HLAA July/August 2012 Magazine Cover 3 years ago My Son Tom Milo Debs' Hearing Journey Telephone 4 years ago Gina Sprenkel - My New Life of Hearing I'm a Saladaholic Silent Sail Happy New yEar 5 years ago Subtitles wedding photography Phone and Music with CI nearly 2years on Kirsty's Cochlear Implant NOT HEARING VERY WELL CI Borg Some Updates Bionic Wombat - Bilateral cochlear recipient July 2010 Amanda's Cochlear Implant Journey Amanda update-March 10, 2010 Kate's Cochlear Implant My final post? 7 months on CHRONICLES OF A BIONIC WOMAN Free Neckloop From Clarity If Attending HLAA Convention 6 years ago deafgirllovessoaps Today's Appointment The journey of Claire's cochlear implant 3-monthly tune up Dawne's CI Journey Wow 7 years ago the DeafBlog Followers Blog-Network NetworkedBlogs Blog: Katie's Cochlear Implant Journey Topics: CI, BSL, Disability Join my network Number of Visitors click for free hit counter code html hit counter Advice/Support From Experience Cochlear Implant users Click the logo to find out more! I was implanted in April '08. I have written about my experiences from times to implantation to the present day. This would be a useful resource for anybody who has been recently implanted or is going through the assessements. I suggest you to look back at the blogpost in April to the present date There are useful Links to other bloggers or CI related are shown at the bottom of this page! If you have any question? E-mail me bionic-katie@live.co.uk or Join Advanced Bionics UK facebook group ; click here Find me on Facebook! Katie-louise Bailey's Facebook Profile Top 15 Blog Award Top Cochlear Implants Blog A New Year 2009 Counter To See Where My Visitors are From? free counters Subscribe me [arrow_dropdown.gif] Posts [subscribe-netvibes.png] [subscribe-yahoo.png] [icon_feed12.png] Atom [arrow_dropdown.gif] All Comments Click the picture to enter their site! Katie's C.I Centre My Videos Loading... Myself & My Team In Russia Richard & Me Me and My Idol (Gareth Gates) Useful Cochlear Implants websites Me and the squad in Germany Picture Window template. Powered by Blogger. kip to main | skip to sidebar CHRONICLES OF A BIONIC WOMAN __________________________________________________________________ Enter search keyword Search Thursday, June 11, 2009 Free Neckloop From Clarity If Attending HLAA Convention :) Data entered by Abbie at 11:40:00 PM 4 comments Catagories: Amplified Neckloop, Clarity, HLAA, HLAA Convention, Neckloop Monday, June 01, 2009 Why Did I Choose Advanced Bionics? I decided to do a little spring cleaning to my inbox and I noticed that my sent folder was overflowing with emails answering why I picked Advanced Bionics for my cochlear implant. It seems that after a 100 or blog. :) There are several reasons I chose AB. I wanted to be able to hear better in noise. I wanted to be able to use the phone like a normal person. I wanted to be able to listen to music with ear buds that otherwise proved completely useless to me when I had a hearing aid – the ear was already full enough :) I wanted to be able to transition through different sound environments without fiddling around with the program. I wanted rechargeable batteries because they are safer for the environment and economically friendlier. I wanted the support that was needed that goes along with learning how to hear with a cochlear implant and because of Hearing Journey, I got answers the second I post a question. I wanted to be able to access the latest MRI technology with minimal surgery. I wanted promises of future technology designed to emulate better hearing without further surgery. I wanted total reliability. I wanted the implant to withstand sweating when I work out ince I was forever killing my hearing aids. I wanted to push the envelope of hearing. When it came down to it – AB was the only company that could give me that. 1. T-Mic Microphone The T-Mic ear hook is only available with Advanced Bionics cochlear implant system. This is not to be confused with the T-Coil, an option that can be turned on by your audiologist on your Harmony Processor. It uses the natural shape of the ear to emulate natural hearing. It helps to provide clarity that is needed for speech and is absolutely fantastic in noise because you can rotate your ears to what you want to focus on like a normal hearing person. It comes in two sizes, standard for big ears like mine and pediatric size for itty bitty ears. Being a long term hearing aid wearer, I was familiar how directional microphones (catches the sound in front of you) and omni-directional microphones (catches the background sound) works but this design intrigued me. With the T-Mic earhook, I can just put the telephone up to my ear without fiddling with anything and the background noise immediately fades away making the your voice or the person on the other end of the phone the dominant sound . When you or the person stops talking, the background noise will become noticeable. It is the same phenomena when I wear a Bluetooth headset and stick IPOD ear buds in my ear. These are things I never thought would be possible with a hearing aid. 2. Auto Sound The phenomenon that I was just talking about is called Auto Sound which automatically adjusts for the environment that you are in. I shall pare you the technicalities of it all. It allows you to hear whispers to shouts without flipping a switch. You don't have to fiddle around with programs. This is a cut and paste from a bilateral AB user that lives with a bilateral Freedom user that explains how useful it is to have valuable Auto Sound is. My resident (bilateral) Freedom user having to switch for the phones, having to switch for restaurants, having to switch back for normal conversations. When we listen to music, he switches and witches programs trying to find something that sounds ok. He gets frustrated with it. If he forgets to switch back, he can spend the morning not hearing well in normal situations, with his voice louder than necessary. That is my tip off that he forgot to switch back...so I will have him check and sure enough, he forgot to switch back from whatever program he was using, back to his "everyday" program. I would be highly agitated if I had to keep flipping programs to go from my house, to my car, to work. With Auto Sound, I hardly ever have to switch. 3. Familiarity of Hearing Aid Style Advanced Bionics has the options of three program slots and it mimicked the style of what I was used to with my HA. Right after you get activated, you tend to play a lot with different programs options that AB has to see what suits you best but now I settled down with just one program from everything: But just for sake of having options, I have a normal everyday program, a noise/telephone program that I hardly ever use unless I am in a noisy environment and music. I find it redundant to have more than three program options because like myself, most of the CI users after they learn how to hear with the CI, you might find yourself just sticking to one. If you go to a CI clinic that gives you two processors, a primary and a back up, you can utilize both of them to play around with different settings until your brain figures out which one it likes best. 4. Widest Window of Sound (IDR) Since a normal person ear cannot process any sound louder than 120dB and it will hurt a hearing person to hear anything louder than 120dB which results them sticking their fingers in their ears to dampen the noise. AB has its own ceiling as well. It is called IDR which stands for Input Dynamic Range that can be adjusted up to 80dB. Other companies are at 45dB. It just means that ceiling on the CI or window of sound can process up to 80dB and then Auto Sound kicks in and automatically dampens the sound to make it comfortable for us to tolerate the loud noise. If you can picture a window shut, which means very little sound is coming through because the window absorbs most of the sound. If you open the window a little bit, you will begin to hear some noise such as leaves blowing around, cars passing or a faint impression of someone hammering. I call this a low IDR. If you open the window up halfway, you are inviting even more noise. You might get the leaves blowing, cars passing and a more distinct impression of the person hammering but you might hear the birds singing as well. If you open it up all the way, you might as well be standing outside. I like to it call it adjustable noise control. :) With a wide IDR, I can go to a concert and hear the concert as it was meant to be heard. With a narrow IDR, it gets rid of unimportant noise or what I call "white noise" and brings a ense of perceptible clarity. 5. Rechargeable Batteries I am extremely environmentally friendly. I recycle. I drive a hybrid which resembles a hardboiled egg but you just can't beat it the 55 mpg that I get. So, rechargeable batteries are an easy "green" option. Advanced Bionics has two sizes of rechargeable batteries, extended and lim. Extended is what I have which I get an average of 24 hours out of, you figure every two days I'm slipping a new one in. I got four batteries with my processor when I was activated and I lost one (blushing) but three batteries last me the whole week. It is not only environmentally friendly, it is economically friendly as well. There are no trips to the store to buy batteries which means more money in your pocket. You might want to buy a new set of batteries every 2-3 years but if you have a durable medical rider on your insurance policy, that means very little out of pocket. AB provides a little wallet that you can attach to your key ring to carry your batteries with you. 6. HiResolution Fidelity 120 Sound Processing Option The latest software development is the HiRes speech strategy option with Fidelity 120 options. This is an option that can help you in noisy conditions, appreciate music and on the telephone. The only way I can describe it is if I compare it to a camera. A hearing aid is a Polaroid and HiRes with Fidelity 120, it is a 4MP Camera. I can hear in noise much more easily than I could ever hear with a hearing aid. Since it was designed with music in mind, it has been a joy to actually enjoy music especially now that I am bilateral. It uses current steering technology to increase spectral resolution from as few as 12 to 22 spectral bands to as many as 120 spectral bands. Advanced Bionics is the only company that can achieve this type of current steering technology because it has a power source each electrode. Other companies that have only one power source for all of their electrodes claim that they can steer electrodes but they have no peech strategy devised for it which makes it totally useless, doesn't it? 7. Independently Controlled Currents or Electrodes Since I have a technical background, I have always been interested in how components function and it played a large part of my research. All the components may look similar in programming, chip size and material but the old saying, never judge a book by its cover. The HiRes 90k implant has the 16 independent computer controlled current sources where other companies have one power source. It is like if you set up X number of speakers and plug them into one outlet, you will not get the ame performance if you plug in each one of those speakers to its own power supply. With independently controlled current sources, the ability for tons of future software development since it can control each electrode. 8. Internal Chip Memory The fact that the internal chip memory is only operating at 25% capacity means that there are tons of room for development. 9. Total Reliability of Internal and External Report Advanced Bionics has been able to issue a total reliability report. For the implant, it is at 99.5 on June 2008 and for the Harmony processor, the return rate is less than 1%. I do want to point out that you want to be worried about the reliability of both the implant and the processor because if one stops functioning, you can't hear - point blank. The other companies do not offer a reliability report on their processors because it is absolutely deplorable. I always hearing about parts breaking down and being replaced. I absolutely hated it when I was left in the dark when my hearing aid broke down and believe me, I have done my fair share of killing them. I felt so disconnected from the world as I knew it. I have yet to have my processor replaced (knock on wood) but if I ever did, I would have it within 48 hours with the Processor Direct Program. In 2004, Advanced Bionics was under another company called Boston Scientific when they had agreements with two Vendors to supply a part for the internal component. They noticed that the rate with Vendor B component was prone to moisture issues was 1% lower than the Vendor A component. AB issued a recall on their own accord recalling the devices due to the potential presence of moisture in the internal circuitry, which can cause the device to stop functioning. Not all of the Vendor B implants had this problem. Advanced Bionics has since resolved this issue by only using parts supplied by Vendor A. As a result, their total reliability has gone way up. 10. Processor Direct Program Processor Direct Program minimizes the time waiting if you should ever need your sound processor replaced. Just call your audiologist and they will contact AB via our secure, automated website and upload your sound processor’s unique program file. AB technicians will load your program into a replacement sound processor and ship it directly to you. Because you receive a fully functional processor preloaded with your customized program, there’s no need to schedule a programming visit. That means more time for yourself and more money in your pocket. Processor Direct is completely safe, so there’s no risk of hearing with the wrong program. AB’s secure website makes it impossible for your audiologist to upload the wrong program file, and for additional ecurity, AB’s patented IntelliLink™ feature will not allow a processor loaded with the wrong program to work with your implant. You enjoy peace of mind knowing you have the correct programs—developed pecifically for you. An office visit to program a replacement sound processor might not be covered by insurance companies, which mean you may have to pay the cost. With Processor Direct, no programming office visit is required and that means no unexpected costs. 11. Support Advanced Bionics has the largest online community forum – Hearing Journey with over 4,500 users. It consists of CI candidates, recipients and parents of children recently diagnosed with hearing loss, parents of children that have cochlear implant and audiologists. It is a huge wealth of information as everyone rallies around for support, offers advice, shares tips and tricks about surgery or learning how to hear with a cochlear implant. There is a CI chat held every Thursday night from 8pm EST til the cows come home, that you can come and talk to other cochlear implant recipients, candidates, parents and audiologists. Just log in to Hearing Journey and click on the chat options and you are in! Advanced Bionic has taken it one step further to provide one-on-one upport. They have just launched a new site for cochlear recipients and candidates from across the country through its new "Connect to Mentor" Web site. The new site, part of the BEA (Bionic Ear Association) Mentor Program, that I and several other bloggers are a part of, allows cochlear implant candidates to contact volunteer "mentors" and communicate directly with hearing professionals. You see my smiling face on this site as well. :) Candidates can use the Connect to Mentor website to search for mentors who include parents of implanted children, relatives of cochlear recipients and adult recipients. Each mentor has a profile complete with a personal photo and facts such as favorite sound, interests (i.e., cell phone user, traveler, musician), hometown, age they were implanted, severity of hearing loss and how they can help cochlear implant candidates. Then, candidates can choose to "start a conversation" with the mentor directly from their profile. Data entered by Abbie at 2:19:00 PM 22 comments Catagories: Advanced Bionics, Cochlear Implant, Harmony Processor, T-Mic Thursday, May 14, 2009 Binaural HINT Scores. Hi! The following blog is brought to you by: Dunkin' Donuts. Dunkin' keeps me blogging. Try Dunkin' Donuts Coffee For Free. Get a Sample Without it, there isn't anything getting done around this blog here. But through the miraculous powers of the coffee plant, I was able to devise this rather inspiring little chart of all my HINT (Hearing In Noise Test) scores. Click here to make it bigger. You will notice that my left ear before I was implanted was 0% across the board. This was an ear that has been unstimulated for over 15 years. I was pretty damn deaf in that ear. I can't argue with that. :) The red column shows my progress with my left ear tested at one month post activation. I scored 44% in quiet. I was pretty elated to go from 0% to 44% in a matter of a month. I distinctly remember thinking that my brain was playing tricks on me because it was almost as though I had to learn to trust myself that I was hearing something correctly. As it would turn out, I was hearing it correctly half the time. The lime green column is my left ear tested at five months post activation. It jumped up to 79% in quiet and 34% in quiet. I was practicing with an audiobook every single day for at least half hour to an hour. This was kind of at the point that my brain was sorting out peech in quiet and learning how to pick out what is important in noise. Baby steps! The purple column is my left ear tested at one year. My score remained the same at 79% in quiet but my score in noise went up to an astonishing 73%. Since I scored so well with the first level of noise, my audiologist felt that I could handle the harder noise test and I cored 64%. I was downright impressed with my scores. Now, I was thinking that the benefit of a cochlear implant can really take up to a year especially on an ear that has been unstimulated for so long. The dark blue column shows my left ear tested at one year and five months. I don't know whether I had a really good mapping at my one year appointment or my ear just blossomed but I scored 96% in quiet, 88% a little bit of noise and 84% with even more noise! Now we are moving on to my right ear that has been stimulated all my life. the orange column shows my HINT scores when I was evaluated for a CI in May of 2007. I wish I could get my right ear tested before I had the surgery because I couldn't hear anything after I hit my head on the roller coaster. But in my total unprofessional opinion, when someone takes a loud speaker and talks to you about five feet away with a fully powered hearing aid in and you can't hear didly squat, I'm going to say my scores were next to nothing. Just saying. The light blue column shows my right ear tested at one month post activation and it scored an AMAZING 85%! Now, it took over a year for my left ear to get up over 80%. Even with the first level of noise, I managed to hear 40%. That will get better as time goes on. Now I am totally giving credit to the substantiated claims that surgeons advice about implanting a better ear. They apparently know what they are talking about. :) It means that it is less stressful and the learning curve is much shorter. But you know me, I do nothing easy... The mauve or dusty pink column shows them tested together. The results are nothing less them supremely impressive. I scored 97% in quiet, 85% a little bit of noise and 77% with more noise introduced. I was so proud of the good job they did on the tests that I went right out and brought them a pair of earrings. :) Data entered by Abbie at 3:32:00 PM 2 comments Catagories: Bilateral Cochlear Implant, Bilateral Mappings, Cochlear Implant, Mappings Northeast Cochlear Implant Convention 2009 I will be attending the Northeast Cochlear Implant Convention 2009 on July 10 - 12, 2009 at the Sturbridge Host Hotel & Conference Center in Sturbridge, MA where none other Josh Swiller who is not only pretty easy on the eyes but the author of “The Unheard: A Memoir of Deafness and Africa.”, will be the keynote speaker. You can take a look at the 2007 convention pictures here. I have to say from looking at the pictures, this looks like it is going to be a fun group! Children, adults and workshops - oh my! So what is this convention about, check out this snippet below. Dear Families and Friends, You are warmly invited to attend the Seventh Biennial Northeast Cochlear Implant Convention, to he held July 10-12, 2009 at the Sturbridge Host Hotel in Sturbridge, MA. On-line registration or registration forms will soon be available on this site. Call 1-800-582-3232 to reserve your room at the hotel, or on-line at www.sturbridgehosthotel.com. Nearly twelve years have passed since our first convention in Sturbridge, in 1997. In some ways, the convention is like a school reunion. Lounging around the pool or at a party in a guest room, we catch up with our friends’ changing lives: new jobs, or maybe retirement; children progressing through elementary, middle and high chool, and on to college. And incidentally, how are you or your child doing with the implant? How nice to hear that things are going well! The theme of the ’09 convention is “We Hear the World.” It is a natural evolution from the previous convention themes of “Raising the Bar,” “Enhancing Communication,” and “Technology Rocks!” In “Raising the Bar” we considered the new higher standards for classroom acoustics, the rising performance levels of cochlear implants and assistive listening devices. The theme “Enhancing Communication” reflected the many new technologies and approaches for facilitating communication access by adults and children in a wide range of situations. “Technology Rocks!” addressed the many exciting technologies and approaches that can unlock communication potential and make possible more complete and satisfying human communication in school, at work, in social settings with friends, and at home.. “We Hear the World” celebrates the many examples of cochlear implant users participating fully and independently in the world around them. The keynote speaker at our upcoming convention, Josh Swiller, will offer some thoughtful and humorous insights about hearing the world and being a part of the world. Josh spent two years living in a rural village in Zambia. That experience is recounted in his book, “The Unheard: A Memoir of Deafness and Africa.” Josh has had a “ large variety of careers, including forest ranger in the California Redwoods, sheepskin slipper craftsman and salesman, Zen monk, raw food chef, journalist, and teacher. The title of Josh’s keynote address is “We Are the World.” Hearing the world also implies that we listen with empathy and respond to needs that we learn about. Like everyone else, cochlear implant users experience passages in their lives. High school tudents leave home for college. College students enter the workforce. The generation born after WWII leaves the workforce for retirement, and many of those who received the earliest implants are now golden agers. New technologies and communication approaches can ease the transition to a more mature stage of life. At the convention we will explore these transitions to the next arena of life. See you there! Larry Orloff, Chairperson, President, MIC and Marilyn W. Neault, Ph.D., Co-Chairperson, Children’s Hospital Boston So go ahead and download the registration forms here and I hope to see you there! Data entered by Abbie at 9:25:00 AM 2 comments Catagories: Cochlear Implant, Convention, Josh Swiller, Northeast Cochlear Implant Convention 2009 Thursday, April 30, 2009 HLAA Convention - June 18-21st Hearing Loss Association of America is holding its annual convention AND celebrating its 30th birthday in Nashville, Tennessee at the monolithic Gaylord Hotel on June 18th to the 21st. You can check out the convention registration package and rates here. Hurry though, the rooms at the hotel are at 98% capacity and registration ends on May 24th. So, break out your happy finger and click on this link for convention details. The keynote speaker for this year is Vint Cerf, Ph.D., vice president and chief Internet evangelist for Google, and widely known as known as one of the “Fathers of the Internet." Anyone who had a hand in developing the Internet is alright in my book. He is hard of hearing and his wife is a recipient of a cochlear implant. I can't wait to hear Cerf's up! I just so happen to have the workshop schedule here. If you take a gander, you see that Tina Childress and I will be giving a workshop called "Wireless Technology Made Simple", on Thursday, June 18th at 2:30. I'm so excited because I love bringing out the inner geek in people especially when it comes to helping them hear better with technology. :) AND! I am going to be representing Advanced Bionics on Bilateral Cochlear Implant panel that my buddy Wayne Roorda is hosting on Saturday, June 20th at 10:00. This panel will be made up of recipients of all brands. I encourage that if you have any questions or concerns regarding bilateral cochlear implantation and you are attending the convention, hoot an email to cipanel09@yahoo.com with your questions. At the same time, my very best bilateral bionic belle, Jennifer and coincidentally Nashville's local HLAA Chapter President will be giving a presentation on Social Networking for Young Adults. She is just the person to give that presentation because she emanates social butterfly! On another note, please help Jennifer reach her goal for the Chattanooga Walk4Hearing on May 16th. I will be volunteering at the Advanced Bionic booth just waiting for people to pick my geeky brain about cochlear implants and the Harmony processor. I am HLAA's 2009 convention blogger! I got some pretty big ears to fill here... Data entered by Abbie at 6:11:00 PM 3 comments Catagories: HLAA, HLAA Convention, Vint Cerf, Walk4Hearing Your Hearing, Your Life - Free Seminar in Melville, NY I'm attending this free Seminar on May 11th, 7-9pm at the Melville Marriott Hotel in Melville, NY on candidacy and advancing technology in the treatment of hearing loss. Sponsored by Advanced Bionics. Featuring Speakers from North Shore Medical Group, Mount Sinai School of Medicine. Space is Limited! To register for this free event please contact: Linda Luallen at lluallen@AdvancedBionics.com 866.844.HEAR (4327) TTY 800.678.3575 If you are unable to attend our event and would like information about cochlear implants, contact The Bionic Ear Association at hear@AdvancedBionics.com or call 1.866.844.HEAR (4327). May 11, 2009 • 7:00 p.m. – 9:00 p.m. Melville Marriott Hotel 1350 Old Walt Whitman Road • Melville, NY 11747 Data entered by Abbie at 6:00:00 PM 0 comments Catagories: Advanced Bionics, Cochlear Implant, Seminar Sunday, April 12, 2009 First Bilateral Mapping... This week has proven not be superfluous but surprisingly productive towards the end. The first couple of days, I would be sprawled out on my recliner, cupping my chin in my hand and staring into space wondering why in the HELL everything was plinking. People plinked. My dog plinked. She was plinking all over the house. I was ready to take her plinking fuzzy butt and have her deplinked. The leaves plinked. The wind plinked. My breathing plinked. Paper plinked. Staplers plinked. It was a plinkerific mess for the first couple of days. As each new day dawned, the chipmunks have gone into hibernation and the robotic voice synthesizer has come out to play. The plinking began to lessen leading the way to the subtle phonetic nuances to enter the foreground. Of course, this wasn't entirely clear to me until I picked up the phone and heard a series of numbers correctly. First, I thought that I got them wrong but I listened with my old ear which proved me wrong. I was hearing nothing but plinking, and unknowingly I was understanding more than I thought. I took me several weeks to understand numbers with the old implant. The last time I could understand anything on my right ear on the telephone was February 22, 2007. Naturally, my optimism levels rose. I decided to tests my brain out to ee what else it was hiding from me. I had the LING sounds read to me, and I guessed all but one correctly - EEE. In the beginning I thought there was no way I could start auditory rehab with everything beeping, boinging and plinking but with my newfound discovery, I threw myself into it. My first "lesson" is Twilight by Stephanie Meyer. I downloaded the audiobook on my ipod and plugged myself in via the Direct Connect cord. I could tell that it was a woman narrating the book, but in real life I had difficulty discriminating between a male and a female. I was not expecting much - a phoneme or two, but much to my surprise I was poradically picking up broken sentences. I was throughly confused when I closed my eyes to understand real live speech, I felt as though I wasn't picking up diddly squat. But, when I had myself plugged into the Ipod I was picking up strings of words. I've deduced that my brain is playing tricks on me. This whole week I had the chance to adjust to HiRes - P. In the beginning, it offered me less plinking than HiRes - S. So, I stuck with P all week but on my way to my first mapping this morning, I put the ear buds from my Ipod into my ear to listen to Twilight and noticed that I was picking up a lot more road noise than I liked. I decided to cycle through the programs to see whether the other two could filter out the road noise. I was pleasantly surprised that when I used HiRes-S at how well it filtered the road noise. I was even more surprised at how well I was understanding - far superior to what HiRes-P was giving me. At the last moment, I decided on HiRes-S as my speech strategy. As I was waiting in the waiting room, I sat a good 20 to 25 feet at a distance from this secretary who was brandishing a very shrilling piece of machinery - a stapler! I was dying listening to every time she felt the absolute need to fasten some papers together which happened to be every ten-seconds. Then my audiologist came and rescued me. First, she performed what is called a NRI test which measures the nerve response to electrical stimulation. I didn't have to do anything but sit there and look out the window watching clouds roll in. This gave us an indication of where the volume should be and it was right in the ballpark. My main issue was the robotic voices and certain high pitched tones uch as staplers, dishes, and squeaky doors, paper and numerous others were causing me to brace for the auditory attack. It doesn't hurt, but it just makes me acutely alert that they are there! So what my audiologist did was raised the volume and added some gains in the high and the lows frequencies. As I expected, we could not map out the robotic voices but we got them tamed. My brain will acclimate in the coming months. This took just a half hour, I was out the door and on my way home. Once I got home, I crashed... Since it has been a few days, I can make an honest assessment of the mapping. My voice sounds like Darth Vader which is really testing my ability to have a conversation without laughing. I can tell the difference between a man and a woman's voice. I noticed that while I am reading along with the audiobook, the frequency that I am picking up entences is increasing. Yesterday, I was driving with a friend in the passenger seat and I could understand him without reading his lips even when night descended. Since my first implant was on my left ear, there was always a degree of difficulty with hearing people in the passenger eat but that has become easier. For me, this bilateral process is like waiting for a flower to bloom. I know the seed has been planted. I'm watering the seed by wearing it by itself as much as I can. I'm fertilizing it with auditory rehab. I'm providing the necessary light by venturing out into different environments. For I know that this cannot be rushed and all I can do is wait. I'm just thankful that I don't need a green thumb for this. :) Data entered by Abbie at 10:23:00 AM 9 comments Catagories: Auditory Rehabilitation, Bilateal Mappings, Bilateral Cochlear Implant, Mappings Friday, April 03, 2009 Bilateral Activation My new ear was activated yesterday and the results were very promising. When my audiologist plugged me into the computer, I could have sworn I heard something – a surge of electricity but at that point my audiologist didn’t even touch the volume control. As my audiologist gradually turned up the volume, I watched her lips emit an artificially high-pitched voice. When the volume reached a tolerable level, I actually HEARD but I didn’t understand her talk where with my first ear; I wasn’t blessed hearing any type of vernacular. Naturally, my response was giddy since she talked like a chipmunk. :) It was difficult to keep a straight face while trying to effectively describe what I was hearing. Once we fiddled around with the new ear, they decided to throw the old one back on to see whether I have a sense of balance auditory wise. I immediately had to turn the volume down on the old one. I could tell that I was hearing in stereo because the auditory input in each ear was dramatically different. My old ear was well, my old ear. My new ear was beeps, bongs, whistles. After a few minutes, my old ear decided to become the dominant ear. Once it did that, it somewhat canceled out ome of the beeps, bongs and whistles. No one took pity on the deaf girl because they started ripping paper, banging on the table and tapping their nails. The entire activation took less than an hour. My audiologist didn’t have to explain anything to me since I am a seasoned pro with the implant business. :) Since I went through this process already, I was very conservative volume wise. With my first ear, it was my initial instinct to amp up the volume because that is how you hear with a hearing aid. This time around, ince I know what I know now, I know that you can’t rush it. Your brain will tell you what it wants, when it wants it. I was fitted with a Hi-Res Paired program with Fidelity 120, Hi-Res Sequential program with Fidelity 120 and a Hi-Res Paired noise program with Fidelity 120. I get to cycle through each one for several hours to see which one I prefer. My audiologist strongly suggested that I leave my old one off as much as possible to give my new ear some time to play catch up. Joy. :) After activation, I walked out of the hospital with my slot firmly in position for Hi-Res Paired program with Fidelity 120 and unknowingly walked into the world according to Super Mario brothers. All sorts of beeps, buzzing, and bongs just pulsing away in my head. It sounds all futuristic but emanates the past of the arcade games from the 80’s. Just driving home was a trip having the wonderfully iconic BOING of Super Mario powering up as I drove over every bump on the road. The only thing that really stood out is when I yawned a good healthy yawn – it sounded like a very horny orca performing their mating call. Feel free to YouTube that. I had noticed that I was unable to hear my blackberry chirp or croak when someone sent me a message. A few hours later, I could hear it. When I first got home, I couldn’t hear my dog’s toenails click clack against the floor. A few hours later, I could. I must have walked her up and down my 15 foot hallway about twenty times to hear it. I’m sure she thought I had gotten lost in my own house. :) I can tell when someone really has a good laugh. That is probably the only thing that I can pick out right now. BUT, I did pick up that there were some drums playing on the television. I learned a little something about bilateral mappings – it wears you out. I mean my mappings for just one were a bit tiring but two – Oy! I’m not a napper by any means because I’ll sleep when I’m dead. But I buckled under pressure and took a twenty minute snooze. This morning I decided to give Hi-Res Sequential program with Fidelity 120 a whirl – at work. I am sitting here with my hair down cleverly disguising two cochlear implants - the new one attached and the old one with the coil hanging just in case I need to use the telephone. it looks like a very ugly earring. Instead of listening to the world dictated by Super Mario Brothers, I am on the Galactic Republic listening to the auroral radio chatter of R2D2. When someone talks, it is as if R2D2 has a hyperactivity disorder – different beeps, bloops, and whistles randomly and furiously. And I am supposed to figure those out. :) I am listening to rain and it sounds like when Sonic the Hedgehog is collecting a whole mess of rings. When I walk down the hallway with my heels, I feel as I am walking with the weight of an elephant because it is very loud. All in all, I am thrusting myself into the noisy world starting from cratch – hearing everything for the first time – again. I forgot how much I loved this process. :) Everything that I am hearing, coincides with a sound immediately. That pleases me. The toughest part about this for me is leaving my old ear off but I will remain diligent. My next mapping is next Friday on April 10th and that is when the real fun begins. For now, R2D2 and I are going to be buddies for the next week. Data entered by Abbie at 1:26:00 PM 15 comments Catagories: Activation, Bilateral Cochlear Implant, Bilateral Cochlear Implant Activation, Cochlear Implant Activation Older Posts Home Subscribe to: Posts (Atom) Cochlear Implant Activation Video Captioned [EMBED] Hearing Loss Magazine Article Download Download my article in PDF file here. Contact Information If you would like to contact me, please send me an email here. Conventions Add Me To Your Facebook Abbie Cranmer's Profile | Create Your Badge Abbie Cranmer's Facebook Profile Twitter Updates follow me on Twitter Followers About Me My Photo Abbie New Jersey, United States Described as a technical abstract work of art, self-sufficient ophisticated woman, a placid creature that unknowingly hunted the knowledge of deafening silence who has nestled herself in the lovely Garden State. Simply described, I am a profoundly deaf 28 year SWF who has a cochlear implant as of August 27, 2007. A date I will never forget. My vocations are a blend of confronting mathematical equations, cracking computer tribulations, and yearning for intellectual conversations. Recent interests include the enjoyment of culinary expression, dynamic color combinations, and the exhilarating feel of wind through my hair. I am fanatical about the intense color of gerbera daisies, the hum of the computer fan, the pitter patter of my puppy's feet. My senses hunger after the heat from the sun ecretly creating freckles, the succulent combination of trawberries and chocolate, and the contentment of solving a udoku puzzle. My only ambition is to revive the sentiment of casual chit chat and the sound of music that brings the beat to the heart. View my complete profile Online Listening Practice Websites Cochlear Implant Blogs Five String Guitar Back to Life 2 weeks ago Cindy Dyer's Blog Hearing Loss Magazine: 2015 Recap Laura's Medical Journey merry christmas 2015 Ruminator's Ruminatings Visiting convenience in heaven 4 weeks ago Sudden Silence A Perfect Storm * Paw Paw Bill Thanksgiving 1978 1 month ago Robyn the Ambling Rambler Berlin - Day 1 - November 2014 2 months ago Nancyes's Blog Music is My Life 5 months ago Bionic World Absolution (2015) Gratis Gratis megashare 7 months ago A more silent world Deaf TV Show - Discussing Cochlear Implants 10 months ago Welcome to Sam Spritzer's Web Site It’s been quite a while…. Literally Blind-Sided Everyday is Thanksgiving Day 1 year ago Bionic Ear Blog Stanford Article: Seeing at the Speed of Sound Michael Chorost Getting insurance coverage for new cochlear implant processors Katie-Louise's Cochlear Implant Blog Advanced Bionics Family Fun Day Geo's big adventure Empty it out Hearing Pocket Cochlear implants — with no exterior hardware – MIT News Office Becoming Deaf in Norway 2007 Starting a new blog–in Norwegian 2 years ago Cuemommy's Xanga My dream has come true... Being Bionic Protected: Testing password protection Hupp Family News 2013 update SURROUND SOUND Vanderbilt Image-Guided Mapping Test Results The Bionic Sound Project Vanderbilt University Cochlear Implant Mapping Process Bravo Rod Bravo Ink Cartridges - Reduce Printing Cost Not the Quality 3 years ago Laurie's Dance with Sound HLAA July/August 2012 Magazine Cover Everyday Life Wait for You/Be There for You MY CI STORY* upgrade, implant #2 and a CI moment ASL-Cochlear Implant Community Jen's Cochlear Implant Journey Thoughts on the Cochlear Recall 4 years ago Ted's Running Journal/Logbook This is a test. Sam's Hearing Life Sheila's CI Journey Cats, cats, and more cats 5 years ago Silent Sail Happy New yEar Lisa Scene I'm speaking in Wheaton, IL, Dec 7, 2010 Confessions of a Cochlear Implantee Radio & Audiobooks - a long awaited update IRV STARR'S COCHLEAR IMPLANT JOURNEY UPDATE Subtitles wedding service Phone and Music with CI nearly 2years on CI Borg Some Updates Work in progress.... Last day of January Dan Solcher's Bionic Ear Blog See pics of Dallas 6 years ago The Royer Family Blog! “You just don’t have that filter hearing people have” Josh Swiller's Blog Moved! Susan's Journey To Sound Technology keeps on moving! Skullchick's CI Journey im terrible blogger HearingExchange - Hearing Loss Blog and Resources for People with Hearing Loss and Parents of Deaf and Hard of Hearing Children Support Groups for People with Hearing Loss – Why You Need It, How to Find It – Paula’s Pearls Syndicated Article Electroded Droid Ear The Other Ear Tales from a CI Gal Brought to Tears Quixotic Deaf Going Bluetooth The journey of Claire's cochlear implant 3-monthly tune up Life In A Cone Of Silence MOVE OVER TO NEW BLOG PLEASE Countdown to Implant ACTIVATED! 7 years ago Radical Bits Nine Months Later The Inner Ear Please check out my new blog! Dawne's CI Journey Wow Experiencing the Advanced Bionics Miracle My Bionic Voyage Happy Thanksgiving!!!!! Tasha's CI Journey Hello! Punisherball54 Digital Age Closed Captioning Revolution My Trip to Hearing Again Not Deaf Cochlear Implant Journey Activation Day - August 12th Amazing Sounds with Cochlear Implant Celebrating our 5th years... The deaf boy in the world Designtavaraa Roaring Lamb Campus life pictures Metal Postcard Activation Day Video (Dec. 11, 2007) 8 years ago Been Cochlearized! vLog on "The Greatest Irony" All Things Related To Cochlear Implants Cochlear implants paid for by insurance policies in the US Ear Ye Ear Ye It's been too long since I last posted... Hook Me Up 9 years ago Ear Ye How this all began... 10 years ago Our Daughter's CI Journey Nancy's Blog Cochlear Implant Online Living with a Cochlear Implant the DeafBlog Inaudible Nonsense Deaf Blog UK BlueJeansGuy Epiphany of the Fox Billy Koch - Where Billy Rambles On and On... Rachel's Cochlear Implant Blog Just Another Cyborg BlogCatalog Health Blogs - BlogCatalog Blog Directory Parents of Children with CI's A Chance To Hear Chance has a style all his own 2 days ago Cochlear Kids 11 Years of Hearing 3 months ago Jazzie and Tahlia More backtracking Lotte Sofie Takîng Control.. Ethan's World 2015 -The Year of Much Progress 8 months ago Grendel's Kitchen For Tess: Ron & Nancy “Misguided” 9 months ago Turn On My Ears! Progress Report - 2nd Grade Tayten Matthew Reading Machine An American Mom in Tuscany: Jordan's Cochlear Implant Story And the winners are....!!!! Bionic Boys American Sign Language Resources Live*Laugh*Love*Family Bless his heart. The CI Circle News Northeast CI Convention, July 26-28, 2013 Amelia' s Journey ...........time to say good bye Universe Cochlea universecochlear Life with Lucas lucasreedcampbell Kauan Tyler kauantyler Erin Toes and her Cochlear Implant Journey It's Not Fair. Ben's Big Family Blog Community Matthew Update Elliott's Journey Apologies all around... Isaac's World Long Time No Blog.... Brianna's Journey Shutterfly...yes, I love shutterfly! Bringing Home Marygrace Prayers Requested Amanda's Cochlear Implant Journey Amanda update-March 10, 2010 Lilyhear New Shop on Etsy - Home Business Jillian Ray Jillian at her BEST! Kairi's Story Starlight Parade Deaf Girl Amanda Universal Studios Los Angeles Parker and Sebastian 2 Kids with CI's Sound Check Mama BlogRush Deaf Related Blogs The Ear of My Heart What Activities Make You Lose Track Of Time? CD's Journey Changes About.com Deafness Hearing and the Brain Kokonut Pundit Thank you. Seek Geo Markkinointi ja internetin kehitys Banjo's World Distracted Driving A Deaf Mom Shares Her World Hello world! Please face me, I read lips Protected: Hearing Loop Comparison Sample (this is a test blog post) Candy Turn A Deaf Ear The Silent War ilentwareachday Life of the Hard of Hearing Upcoming weekend Jim's DEEP Thoughts Will no longer post this blog Paotie's Green Couch College Football Rankings: Week Eight Living The Questions Still Here Beethoven's Ears Do You Really Want to Know? CANDY Mishka Zena The Orange Deafie Blog Indiana Deaf Mother's Babblings Hearing Loss Nation Visit HearingLossNation Previous Posts Loading... Resources Label Cloud Blog Archive Top Health Blogger Award [wsBdgPxl.gif] [imageService.s?size=thumb&badge=true&id=20238] Abbie Cranmer Hearing Loss & Deafness Community Top Health Blogger - Wellsphere Wellsphere more widgets from wellsphere Blog Awards Treasured Blog Award Treasured Blog Award Excellent Blog Award Excellent Blog Award Gratitude with Attitude Award Gratitude with Attitude Award Brilliant Weblog Award Brilliant Weblog Award News Blog Roll Copyright © 2008 - CHRONICLES OF A BIONIC WOMAN Sam's Hearing Life February 2, 2011 A few months ago, my mom and I were due for an upgrade on our cell phones. I usually get it at the same time as her so I can get the free one in the "Buy 1 get 1 Free" special. This time, we got the Blackberry Bold. I had full intentions on getting a Blackberry once I graduate from college and into the "real world" but I was going to wait until then because I didn't think it would be necessary for me since I'm just a student. Never would I have thought I'd become SO addicted to this Blackberry! Ever since I have gotten it, I have become addicted with getting all my emails immediately, browsing the internet wherever I go and all the other applications available on the Blackberry. But the MAIN reason why I love this new phone and why I think its blog-worthy is that I am now able to hear and understand on it A LOT better by using my Cochlear Implant!! Before, I've had to use my Hearing Aid and it would always be a hassel because I would have to be omewhere quiet... which in my case, very rare! So now, I'm talking on the phone more and building up my phone confidence! And I must say, it's about time! :) Guess that "Buy 1 Get 1 Free" Special ended up being a "life-saver" for me as it's the perfect time for me to start getting used to using my CI on the phone. Posted by Samantha Brilling 2 comments: September 29, 2009 The jobs I never thought I'd have... are the jobs I'm doing! Before I got my implant, there were some jobs I thought I would NEVER be able to have and I thought I was going to miss out on the jobs that “everyone starts off with” such as being a waiter, working the front desk answering phones, helping visitors with directions, working the cashier stand at a fast food restaurant, etc. But since I’ve started college and become more comfortable with my implant/hearing… I’m working one of the jobs I thought I would NEVER have which is working the front desk as a receptionist. For the past year, I worked the front desk answering phones and assisting visitors who came into the Berry College Alumni Center. Sure, in the beginning it was a little tough getting used to it, and I always got nervous when someone called because I was afraid I wasn’t going to understand them or to be able to answer their questions, etc. But as time went by, it got easier and I got more comfortable answering phones and helping people. But now, since I’ve switched jobs/departments, I’m no longer working the front desk but I’m answering calls about reservations in the different meeting rooms, dining halls, ballrooms, etc. So it’s definitely been an adventure working these jobs! Every day it amazes me that ME – a DEAF person – is answering phones, helping people, and training the new freshmen, etc. It makes me feel good that I’m able to do this and it makes me that much more grateful for the opportunities I’m now experiencing because of my Cochlear Implant and having gone through Auditory Verbal Therapy. Without them… I don’t know where I would be working right now. I guess you can say that deaf people can achieve what we originally thought was impossible! :) Posted by Samantha Brilling 53 comments: July 23, 2009 Body-Worn Processor can come in handy My Grandpa has had the implant for about 2 years now and seems to be progressing. But unfortunately, because of his age and health, his progress is very slow. But even though it's a slow progress, we can definitely see a difference with his conversations being more at ease. He can hear a lot better then he did with just the two hearing aids and we don't have to worry about him using the FM system as a microphone for everyone at the table. He can definitely do a lot better in the quiet environments but it does get challenging in the noisier environments so we have to make sure we talk slow for him. Since he has gotten the implant, we have been noticing that he has a hard time managing his BTE processor, oxygen tube and glasses all on his ear. It would sometimes get tangled up and everything falls off. We have tried the earmold for his ear to help hold it on, but it was too difficult for him to use. So as a solution, we traded out the BTE processor for the body-worn hoping this will help. As a result, he doesn't get tangled up on his ears balancing everything and plus, he eems to be hearing better with the body-worn instead of the BTE! So we're glad this is working out better for him... I guess you never know until you try it! Posted by Samantha Brilling 1 comment: July 13, 2009 Jonathan's new job with CutCo! My brother just got a job last week working with CutCo. Now for those of you who aren't familiar with CutCo, it's a knife company that involves selling them "door to door." Apparently these knives are very expensive but top of the line... I don't even think you can buy them in tores. So what he has to do is call people up asking them to make an appointment so he can give them about a 30 minute presentation of the products and hope that they'll be interested enough to buy some. Its a hard job - sometimes they'll buy and sometimes they wont. But what's amazing is that he's able to do all this -- call people up, make appointments, give about a 30 minute presentation of the knives, and sell them. Literally the job of a salesman! After 2 days of working, he's made over $3,000 in sales! Now, that's pretty impressive!! I think he not only loves making the sales, but he loves how he gets calls from his boss checking in and complimenting him on how great he's doing! Jonathan making one of his first sales! But if you think about it, he would not be able to do this if it weren't for the AB Harmony. We were all kinda actually kinda nervous in the beginning on how he would do... but he has definitely proved us all wrong - nothing can top you from doing what you want! So thanks for the Harmony and Jonathan's hardworking personality, he's able to make great money and ave up for college and a new car! :) Posted by Samantha Brilling No comments: June 15, 2009 Keith Urban Concert! Since I LOVE Keith Urban's music, my brother and my best friend got me tickets for my birthday to see him in Concert which was last night! And the concert was AMAZING! We had such a great time dancing and singing along with Keith Urban and his songs! Thanks to the Harmony, both my brother and I could actually enjoy the concert and sing along with his music! Now, hopefully next year we can try to go to the CMA Music Fest in Nashville, TN and see ALL of our favorite country stars!! :) "I'm alive and I'm free... Who wouldn't wanna be me" -Keith Urban May 27, 2009 Future Entrepreneur? Berry College has several Student Ran Enterprises on campus... Lisa and I started an enterprise creating an Online Alumni Collection. Since the Alumni only have a few "Alumni items", we are creating an online based tore to provide more alumni items for both the younger and the older graduates. The other day we were interviewed and published in the Rome, Ga Newspaper! Check it out: Ideas bear fruit at Berry by Bryant Steele Berry College freshman Samantha Brilling (left) and sophomore Lisa Smith with some of the products from their business venture, the Online Berry Alumni Collection at Oak Hill. Alumni gear is currently available in the alumni office in the Ford Buildings on Berry College's main campus and will soon be available online through Oak Hill's Web site. (Photo by Lindy Dugger Cordell / RN-T) The whiteboard in Rufus Massey’s office at Berry College (map) is a color-coded mass of lists and boxes with lines and arrows connecting one thing to another or more. It is what Picasso might have come up with had he been a business major. Massey’s masterpiece is an evolving study in a new student work experience called Enterprise Development. “We want to build a high-performance team, and we want the students to be more competitive in the workforce when they leave,” Massey, assistant vice president for enterprise development, said. He said the program shares ideas with the entrepreneurship program at the college’s Campbell School of Business, but the businesses this program builds will stay at Berry after students graduate, always to be run by students with oversight from faculty and staff called co-managers. “It gives students the opportunity to run their own enterprise,” Massey aid. “The students had to develop the project plans.” The idea, to market Berry’s products and services beyond the Berry family, had its genesis in October. The progress will be evaluated during the summer (summer students are keeping the pilot projects going), and Massey hopes to have more projects up and running by fall. Most projects have a readily recognizable Berry theme, like the Berry Farms Jersey Milk Co. and Berry Farms Jersey Beef Co. Then there’s Vision Studios, a video production company to visually preserve not only anniversary and birthday celebrations but also property owners’ belongings for insurance purposes. “For the last six months, we’ve gathered ideas. We have 200 ideas on the business concept list,” Massey said. Berry Farms Genetic Services can take advantage of the school’s Jersey cattle herd, ranked No. 13 in the nation, he said. “Genetic Services basically would have a veterinarian work with students and harvest embryos and ship them frozen anywhere in the world. The goal is to have Berry Cattle walking all over the world. It’s all about continuing the Berry line.” The Cottages at Berry – four log cabins — are “not really open to the public,” Massey said. “But with 21,000 alumni, there are plenty of customers.” The cottages are being converted to a student-run enterprise with the goal “to keep them full all the time,” Massey said. The Berry Bike Shop is an old blacksmith shop that will partner with local bicycle shops and provide minor repairs, tours and rentals, he aid. Berry Farms Jersey Milk “has taken the campus by storm,” Massey said. It’s processed by Cagle Dairy in Canton and offered in whole, 2 percent and chocolate. Details about offering it to the public at large are being worked out. “What we have in mind” with the Berry Organic Garden “is that the average meal takes 1,500 miles to get to the table. Wouldn’t we rather have food that takes a quarter-mile to get to the table?” ‘Sky’s the limit’ “We are actually selling product now,” said Nathan Clackum, co-manager of Berry Angus Beef Co. “So far we’ve been mainly marketing to faculty, taff, students and alumni. However, we will sell it to the public. (See Berryangus@berry.edu for sales information.) “Berry Angus specializes in high-quality ground beef and steaks. Our product is natural, which means that there are no artificial preservatives or artificial ingredients added to the meat. It’s also raised without added hormones.” The product is seasonal (January through July) and is processed by Sheriff’s Meat Processing in Calhoun, a state -inspected plant, Clackum The school has been marketing animals in larger portions for several years, but the enterprise selling individual cuts just started in May, he said. Massey would one day like people to see menu items from Berry College Student Enterprises. “It’s not far-fetched. It’s pretty simple to do that.” “Basically, the sky’s the limit,” Clackum said. “We’re going to grow based on demand. We have the animal numbers right now to do about 40 head per year.” Jessica Crumbley, general manager of the enterprise and a rising enior, asked to be a part of the pilot project. She thought it would be helpful because she plans to be a veterinarian but doesn’t have a business minor. “It gets me thinking about all aspects of running a business,” she aid. “Raising steers, getting them prepped, the paperwork. It helps me ee more than just the health care. Alumni have bought Berry merchandise for years, but The Alumni Collection at Oak Hill enterprise plans to sell even more caps, shirts, motto plaques, calendars and more. Operations manager and rising junior Lisa Smith and marketing manager and rising sophomore Samantha Brilling will survey alumni at the upcoming Alumni Weekend for additional merchandise ideas as they also plan to take the business online. Brilling, a marketing major, thinks the enterprise will help prepare her for her career. Smith said she does it more for the students. “I came from the business world back to school,” she said. The Berry Enterprises Student Team is a support group majoring in areas like business management, accounting and finance, marketing and communication, Massey said. The group will meet at least once a emester to discuss what’s been accomplished and seek advice from a volunteer board that includes trustees, Campbell School faculty and the Alumni Council. David Reeves, a rising senior and visual communications manager, is on the BEST team and is Web designer for the entire project. “Most purchases will be made online eventually,” he said. “The Web is now the new Yellow Pages that everyone can go to for reference.” “Our home page will be about how we’ve come about, who we are, have contact information and a link to all the enterprises.” It will include information about how the project helps further education, he said. ‘Premier work institution’ The program has levels of work. Freshmen start at level one and have the opportunity to reach level five and run entire programs. “The ultimate vision is student-run enterprises,” Massey said. “Academics are still first, but work is a unique component. “Berry’s vision is to be known as a premier work institution in the nation,” Massey said. “By the time students graduate, up to 95 percent have worked on campus. It’s the culture.” May 19, 2009 Connect to a Mentor An article from Advanced Bionics: Advanced Bionics is connecting cochlear implant recipients and candidates from across the country through its new "Connect to Mentor" Web site. Valencia, Calif. (PRWEB) May 18, 2009 -- In the first such online community of its kind, Advanced Bionics, the only U.S.-based manufacturer of cochlear implants (or "bionic ears"), is connecting cochlear recipients and candidates from across the country through its new "Connect to Mentor" Web site. The new site, part of the BEA (Bionic Ear Association) Mentor Program, allows cochlear implant candidates to contact volunteer "mentors" and communicate directly with hearing professionals. "Advanced Bionics has an actively engaged population of 6,000 BEA members," said CEO Jeffrey Greiner of Advanced Bionics. "In developing this Web site, the company realized that its most valuable assets are cochlear implant recipients themselves. This site allows them to share their experiences, offer advice to others who might be thinking of being implanted, and help them navigate the process from surgery to entering the hearing world." http://www.bionicear.com/CTM May 15, 2009 Hearing Journey Advanced Bionics has a website called the Hearing Journey which is a community website for all AB staff, AB CI users and potential CI users who come together to ask questions and to help others with their questions and concerns. This is also a great way to meet and connect with other people who are going through the same journey with getting the CI. I'll be honest, at first, I wasn't a fan of the site. I liked the concept of it and thought it was great. But when I first became a member and started looking around at the different topics, I thought it was a bit obnoxious. There were so many people posting comments, I couldn't keep up. But now, that I've had more time to explore the site... I've started to catch on and is enjoying the site more. It has a lot of helpful topics... even for me! Some of the topics include: - Sports & Protection - Telling people about the CI - Alarm Clocks - Surgery Concerns - Mapping Tips - Information about the CI parts ---and many more! So I suggest you to sign up for the Hearing Journey website and read what other people have to say. Or maybe post your questions/concerns so you can get even more feedback from just reading these blogs. www.HearingJourney.com May 7, 2009 Audio Tours in Museums! Last weekend, my Mom and I went to the Mummy Museum and we paid for the Audio Tour. We assumed it was going to be a little recording with headphones to listen with as you walk around. I used that when I went to the Art Museum downtown… instead of using the regular headphones that came with it, I would just plug in my direct connect cord from my implant to the recorder so I could hear it better. It was great! But suprisingly, this place was more advanced and had personal walkie-talkie phone type things we listen too. When they handed this to me, I wasn’t sure how this was going to go. But we figured we’d try it out anyways. As you can see from the picture below, it was basically like holding a TV remote to our ears and listen to it…. It was like we were from the future! I felt like such a dork walking around with that! haha But surprisingly, I could understand most of it! In fact, we got more information and details then a person who didn’t have the audio tour! It was like we had our own personal behind-the-scenes tour guide! So being that I love learning about mummies and Egypt, I was very thankful we got the Audio Tour and that I could hear it! :D April 3, 2009 The Wonderful World of BEA Mentors! Last weekend I flew out to Valencia, California for Advanced Bionic’s BEA Mentor Training Weekend with about 40 other people who also have the Advanced Bionics Cochlear Implant or someone else in their family does. It was so much fun learning about the company, about the things coming out in the future, seeing AB’s headquarters, meeting all the BEA and AB staff and learning how to be a better mentor. I also had a great time meeting other people who have the CI and hearing about their hearing journey and what it was like for them to go through the process of getting the implant. It’s amazing to me to hear all the stories of what it was like, because it seems like we all have unique situations that we’ve been or are going through. Here are a couple pictures of me with some of the other CI users I met… I edited my links list which is to the right, below my profile box. As you can see, there are three categories: Resources, Other Bloggers, and Other ways to find me. In the “Resources” category, there are some important links to check out for when you are going through your CI journey… The Auditory Verbal Center is the center I went to for Auditory Verbal Therapy to help train my brain to hear and understand with the CI. This is also the center that taught me to hear and speak when I was diagnosed at 2. So I went there for therapy when I was youger to learn to hear and speak with my hearing aids... then when I got my CI, I went back for a couple months for some more therapy. Advanced Bionics, as you probably already know, is the Cochlear Implant company I have… best choice I ever made! This is the link to their website in case you want some more information anout the company. Hearing Journey is an online community through Advanced Bionics to where other CI users and potential CI users can post topics and discuss their questions or concerns. Hearing Exchange is Paula Rosenthal’s site for blogs and recourses of people with a Hearing Loss. On Facebook, she also has two groups you can join called “HearingExchange” and “HearingExchange Teens.” I am a member of both groups, which is cool because you can meet other deaf people and post on discussions within that group. It’s a fun way to meet other deaf people in your area and throughout the country. Deaf Village is also a website like Hearing Exchange to where you can find information and resources about Hearing Loss and other deaf people. The next Category is “Other Bloggers" and as you can tell, there are three subcategories for Adults, Young Adult/Teens and Children. So depending on your situation, you can also find someone else w ho might be going through the same challenges as you. They are all great Mentors and some of them I had the privilege of meeting at the BEA Mentor Training this past weekend. So I highly recommend checking them out too! :) And lastly, “Other ways you can find me” is for anyone who would like to find me outside of my BlogSpot… through Facebook, Twitter, MySpace, Email, AIM and/or Skype. I love getting emails and meeting new people... so feel free to find me or add me as a friend! :) I hope these links will be beneficial to you and if you have any other questions or comments, dont hesitate to ask/tell! :) January 5, 2009 A Flock of Geese My friend John, who just got the implant, was telling me today about how he heard a flock of geese for the first time! The other day, he went hiking with his dog and heard this weird sound and couldn't figure out what it was. But he noticed his dog looking up, geese flying above him! He was so excited that he could hear them because before he would have been completely oblivious to them... he would never have known they were flying above him unless he was actually looking at the sky. Now, if you were out and enjoying nature taking nice hikes through the woods, wouldn't you want to get the full effect and hear all the neat ounds of birds and animals? I know I would! :) I guess its the little things that we take for granted that mean the most... It always makes me happy when deaf people hear new sounds for the first time making their faces glow with excitement! I guess you never know what you're missing out on until you hear something for the first time. January 3, 2009 Living Apartment Style... I always laughed when people would complain about how they could hear their neighbors when they lived in apartments because I never really thought I would have to worry about it. I never really thought it would bother me because at night I would just take my hearing equipment off and I wouldn't hear anything. But scratch that... The other week I stayed with some friends in New York City in their apartment which happened to be on the 17th floor. But even though it was pretty high up, I could STILL hear the traffic outside! It was so annoying when I would be reading or just hanging out there when every ten minutes I'd hear someone honk their horn or hear the police or ambulance go by! It was almost like the windows were open, but they weren't! lol Even though I wouldn't want to listen to that everyday in my own home... I still thought it was kinda cool that I could hear everything outside from the 17th floor! lol I guess that's something you'd just have to learn to deal with living in the big city! Here's a picture of the view outside the window... The city was so much fun though... we had the view of the Empire State Building! :) December 11, 2008 First Semester of College.... DONE! So I survived my first semester of College! SWEET! It's been a great semester of both good and hard times with basically tarting over leaving high school behind, making new friends, living on my own with a roommate, starting a new job (with fancy paychecks!), and keeping up with all my classes... but most of all, just having fun as a college student! :) When I first enrolled to Berry, I was given several options because of my hearing: - Option One: Private room - Option Two: Note-taker, FM system, etc. to help me in classes (like the 504 plan in high school?) - Option Three: Fire alarm with a blinking light But I didn't take the first two... just Option Three for safety reasons. Option One Explanation: One of the main challenges about college is learning how to live and deal with a roommate. I wanted to experience college to the fullest, so I decided to try it out with a roommate and see how it goes - just so I can say I've tried it. It was weird and kind of nerve-wrecking at first. I wasn’t sure what it was going to be like having to share a room with a girl I didn’t even know. I was also nervous about at night when I take my hearing equipment off. I wasn't sure if I was going to be missing out on stuff or if my roomie would have people in the room or would be going through my stuff while I'm asleep and unaware. And the thought of that kind of freaked me out. But then as the year went on, living with a roommate is like living with a sister I never had, which had both its good and bad times. haha And about the night time worries… that’s basically a trust issue. I just learned to trust my roommate and set some ground rules in the “roommate contract” that everyone had to do in the beginning of the year, to make sure that we don’t have guest hanging out in the room once one of us is asleep. But I gotta say, it’s definitely been interesting living in a hearing/deaf roommate situation. As it turns out, she loves having the deaf roommate because it gives her a lot more advantages than me like not having to be quiet when I'm asleep. But I, on the other hand, had to learn how to be SUPER quiet in the morning so I don't wake her up. We also had a challenge in the beginning with my alarm clock because he could hear it vibrate. Thank goodness I don't have to use the flashing light or the loud noise to wake me up! :P But even though we had a few challenges, we learned to accept and overcome them. Option Two Explanation: I took about 5 classes this semester, and I didn’t use a note-taker or an FM system to help me in any of them. In fact I don’t think my professors even knew about my hearing… if they did, it’s because they either figured it out or someone else told them. In High School I just told my teachers that I was deaf, but they all forgot after a month of having me in their class so I figured I wasn’t going to really worry about it here unless it became a problem. So I just made sure I sat in the first or second row to where I can hear my professor and to be able to see the board or PowerPoint presentation for notes. And honestly, I didn’t really have a problem with any of them. So yeah, I guess you can say those would be two obstacles a deaf person would normally face in college… but luckily for me, I did just fine this semester! Here are some pictures of some of the highlights of this semester… Freshman Service Day - Some girls and I got grouped together to clean and organize a storage room for a Teen Center. We found these baby dolls so we were having fun with them haha Giving Blood for the first time! :) Mountain Day Weekend at Berry - each residence hall had a different theme, and ours was the "InCLARAbles" :D A "Mock-Cocktail Party" for the girls on our hall Halloween Dance Lighting the street with candles for all the Alumni driving in for an Alumni party: So as you can see.... it's only been one semester and I already have tons of great memories!! I love College!! :) October 22, 2008 Clickers in Class So apparently the new thing to do is to use little "clickers" in class... The clicker we use: I am taking a Government class on Contemporary World Issues this emester and my professor likes to use this clicker system for class questions, quizzes, and/or debate questions. How it works is that sometimes she'll post the multiple choice question on the overhead or most of the time she'll read them allowed and we all have to send in our answer to the computer through the clicker. Then once everyone sends in their answer, a bar graph shows up on the overhead showing what everyone chose (anonymously). And that's how she monitors how the class is doing and how we generate debate topics in class. Sending in your answers: The class results on the overhead: (But in my case - without the question showing) I think its pretty weird to think about how much the world relies on technology. And I also think its pretty cool that I'm able to hear and understand the questions my professor is asking so I can send in my answer through those little-handy-dandy clickers! haha :) October 10, 2008 Security Feature? I was walking to my car the other night and I didn't see anyone around, back to my dorm. But then while I was walking, I realized I was hearing footsteps that weren't mine. So I glanced back and as it turns out, there was this guy walking behind me. I didn't know who he was or if he was following me so just to be on the safe side, I kept walking to the nearest open building. Luckily he just kept walking past me. lol But even though Berry and Rome seems to be a safe and "homey" campus, it was still kinda freaky. I immediately thought about those stories you hear on other campuses about people disappearing and what-not. So I was really thankful I could hear the footsteps behind me, becuase if I didn't... what could have happend? Kind of a freaky thought, I know... but you just never know these days... :/ October 2, 2008 I'm a working girl! I got my first *real* job working at the Berry College Alumni Center! :) I work for a few hours everyday before and in between my classes. Basically I just have to help out around the office/center by entering data into Word or Excel on the computer, delivering mail, stuffing envolopes to send to Alumni and help out with various Alumni events. But usually I'm at the front desk greeting people and answering the phone helping and directing anyone who calls. But then the best part is, when they don't really have anything for you to do - you can work on your homework - and still get paid! haha At first I was really nervous about working at the front desk becuase I was worried that I might not be able to understand or help people on the phone answering their questions and what-not. But luckily, it's actually not that bad! I've been working here for about a month and a half and it's getting easier to answer the phone - I don't get so nervous! Plus, it's kinda fun when you see people and students passing through the center as they all wave or say Hi to me back! When someone calls and I'm able to answer their questions or to transfer them to someone they need, I always feel good and proud of myself becuase I was able to answer the phone and to help them out! :) This is the front desk - where I'm normally working: Notice the phone? There's so many lines and buttons to transfer calls too! haha September 8, 2008 Strobe Lights They just installed some Strobe Lights in my dorm and also in the bathroom for in case if there is a fire. The guys that installed it, tested it out to show me how it works. So basically when the smoke alarm goes off, the strobe light will make a really loud noise and flash a really bright light until the fire alarm goes off. So now, not only will you hear the normal smoke alarm noise, you'll also hear the strobe light blaring and see it flashing a really bright light. Which as we all know, means... you evacuate immediately! lol They put one above my door in my room so if I'm sleeping, the light flashing will wake me up. And they put it in the bathroom so in case if I'm in the shower, I'll ee the light flashing and will know to get out ASAP. Here is what it looks like: The Strobe light above our door to our dorm: The Strobe Light up close: The Strobe Lights in the bathroom - they put two of them, so you can ee the light flashing in all of the showers: Its kinda weird having the strobe lights on the walls and the ceilings, but at least now I'll know if there's a fire at night or while I'm in the showers so I'll know to get out ASAP! :) September 3, 2008 GPS Navigation System Ever since my best friend got in a bad car accident (don't worry - he's doing great now) because she was looking at a map trying to figure out where she was going, I am VERY thankful that I can hear my portable Navigation System telling me when to turn and where I'm going. Especially since I have really really really bad sense of direction! haha I have a weight-stand thing that holds it on the dash so it doesn't lide around, but I also tend to just put it in front of me behind the wheel so it doesn't block my view. But either way, I can hear it fine when its talking to me even while I listen to my music at the same time But I gotta say, this thing DEFINITELY comes in handy... it's also a great feeling knowing I'll always be able to find my way home! hehe :D August 29, 2008 Living on the Berry College Campus... :) Well, it's been over a week since I've moved into my Berry College Dorm! :) It's been so crazy and busy this week trying to get situated, ready for classes and work, meeting new people and trying to figure out where everything is! But so far it's been going great!! My Weekly Schedule: Monday & Wednesday: 8:00 - 10:00 -- Work in the Alumni Center 10:00 - 10:50 -- Economics 11:00 - 11:50 -- English/Writing LUNCH BREAK 1:00 - 2:00 -- BCC - Freshmen Class Tuesday & Thursday: 9:30 - 10:45 -- Psychology 11:00 - 2:00 -- Work in the Alumni Center 2:00 - 3:15 -- Contemporary World Issues (GOV) Friday: So I have about 13 credit hours (the max they'll allow for freshmen) and about 12 hours of work a week. Then next week they're having the tudent involvement fair to see all the clubs that they offer and join the ones you want. So I'm excited about that!! There's two clubs I already want to join which are The Swing Dance Club and the Ballroom Dancing Club! :) But I also want to find some other clubs to join - preferably some clubs that involve community service work, so we'll ee... Work is interesting... I basically help stuff envelopes and mail them out to Alumni and help out with Alumni Events but on Tuesdays and Thursdays I work the front desk greeting people and answering the phones and what-not. So it's pretty cool helping out in an office cene... plus, I get my first pay check in two weeks!! hehe :) Well, it's been interesting living with a roommate. So far it's been going pretty good. I use my vibrating alarm clock to wake me up and the RA's are going to install one of those strobe lights for the fire alarm in the bathroom and probably one in my dorm room so if I don't have my hearing equipment on, I'll be able to tell if there's a fire. But it's been fun getting to know everyone on my hall.... the other night, our whole hall got dressed up and went out to dinner before we went to the Freshmen Talent Show. Last night I went to the first Swing Dance and tonight is the Welcome Back Toga Dance! And last night, Dana (Boy's Dorm) invited 3rd Clara (our floor) to their pool party next monday! Dana Dorms had to pick a girl's dorm floor to invite, and we're the ones that got invited!! :D So that was pretty cool! Here are some pictures of my dorm.... Clara Hall's Main Entrance- We're on the 3rd floor: Our door - Clara 310: My half of the room: Just what everyone loves.... textbooks! So I guess you can say I'm officially a College Student! :D I've survived the first week of crazyness and now I get to enjoy a long weekend for Labor Day.... of writing papers that are due next week and reading a bunch of stuff for my classes.... oh boy! :P August 18, 2008 Future Pilot Jonathan! Well, as some of you may know, my brother is pretty big into the military and hopes to one day be a pilot for the Air Force. He's a member of the Civil Air Patrol at the PDK Airport in Atlanta and this summer he went to Boot Camp for two weeks. Now, to any other person (including me)... that would be complete torture. But as for Jonathan, he had the greatest time - learning different drills and commands, rescue missions, getting in shape, challenging himself and his team, Army obstacle courses, making friends, etc. In fact, he was actually sad to leave! haha But he's going back in December for the "Frost Bite" camp session where they do the same thing, but in the winter/snow. YIKES! Jonathan's Barrack, where he slept on small bunks with a bunch of other guys: "Graduating" Ceremony on the last day: Marching - he's the last one in the last row - the one smiling lol: "Goodbye Chant" with some of his friends: Then for the rest of the summer, he got a job at the PDK Airport basically being an assistant to a private pilot. He's learning all about planes, how they work, how to wax and keep them clean... and on top of that - he's learning how to fly!! Whenever his boss had to fly to another city, Jonathan would go and sit in the Co-Pilot seat while his boss teaches him all the controls and what-not... Jonathan was so excited when his boss let him take control of the plane in the air! We weren't sure about how he was going to do up there with the Cochlear Implant and headphones.... but surprisingly he could hear everything and could have a conversation over the headset! So that was great news!! :D He just got his "Pilot Physical" the other day so now he's officially clear to take flying lessons and learn to be a pilot. He's thrilled!! Well here are some pictures of Jonathan with the plane he waxed and flew to Memphis.... so far he's been to Knoxville, Memphis, St. Louis, and Athens. WOW! Waxing a plane at one of the conventions: The plane Jonathan got to fly... can you tell he was excited?! :P Getting ready for take-off! Can you imagine jumping on a plane and flying to a city for the day?! It reminds me of the movie "Pretty Woman" where they fly to San Francisco just to see a play..... now, that's a life! :P Well, we are all very proud of him... this has been his dream and now it's coming true! Now we just wait two more years till he graduate and ee where he ends up! :D Guess this goes to show, that you shouldn't let anything get in the way of what you want to do with your life! :D August 11, 2008 One of the greatest sounds ever... is hearing your car beep everytime you lock and unlock the car! :D I just got a new car for college - Kia Optima - and I LOVE it so much! Its the first car that I've had that has the beeper thing to lock and unlock the car. So I've been having the funnest time locking my car.... ometimes I would just click the lock button a couple times just to hear the beep! haha Don't you just love that sound?! :P - Picking up my car - -The tag in front.... my nickname becuase I love Swing Dancing - -PROUD STUDENT.... I've waited a long time to be able to put this on - :D Older Posts Home Subscribe to: Posts (Atom) Samantha and her brother, Jonathan About Me My Photo Samantha Brilling Atlanta, Georgia, United States I was born profoundly deaf but wasn’t diagnosed until the age of two, which is when I immediately started wearing two hearing aids and going through Auditory Verbal Therapy. My hearing and discrimination got worse in 2005, which is when I got my Advanced Bionics Cochlear Implant. Now I wear the CI on my right ear and a hearing aid on my left. I'm a student at North Georgia College and State University majoring in Marketing and Graphic Design. View my complete profile I am a BEA Mentor because: "I enjoy mentoring people who are going through the same situations that I went through in deciding to get the implant, going through the urgery, and learning how to hear all over again or even for the first time. I got my CI at the end of my freshman year in High School so I can remember what it was like before I got the implant and how my life has changed ever since. I would like to share my experiences with other people from a teenager's perspective and to share the stories about my younger brother Jonathan and my Grandpa Sam, both of whom have the CI as well. My brother was implanted at age 5 and my grandpa was implanted at age 85." -Click Picture to learn more!- With my Cochlear Implant, I can: "Be a normal teenager/young adult and enjoy my college experience with my regular hearing peers. Now that I'm away at college, I can call my family and tell them all about my day and about the things going on in my life." My Favorite Sounds: "I love hearing my family talking, laughing and having a great time with me. The horn/beeps from my new car when I lock it. Music from the direct connect cord to my ipod when I go jogging, laying on the beach, etc. Music in the background at a restaurant or a coffee shop." Blog Archive Other Resources: Adult Bloggers: Young Adult/Teen Bloggers: Pediatric Bloggers: Other ways to find me: Samantha Brilling's Facebook profile Twitter Email: CreativeSam1@aol.com AIM: CreativeSam1 Skype: Bluelime0501 Subscribe To SamsHearingLife [arrow_dropdown.gif] Posts [subscribe-netvibes.png] [subscribe-yahoo.png] [icon_feed12.png] Atom [arrow_dropdown.gif] All Comments Sam's Hearing Life July 1, 2008 May 2008 - I DID IT! Going through memory lane of my high school years… 9th Grade – I was struggling in school trying to keep my grades at least a B+ while my hearing continued getting worse to where I was missing a lot and my speech discrimination was decreasing. I tired everal different hearing aids maxing out the settings and volumes realizing that hearing aids really weren’t helping me. I was not really involved with school clubs and pretty much stayed to myself. --Summer-– I got the Cochlear Implant. 10th Grade – I had to relearn sounds all over again and get used to life with the Cochlear Implant - 8 hour batteries, no leaning up against the fridge or the car, dealing with hearing my dogs licking themselves all the time, etc. My grades in school were getting better and I was starting to become more confident with my hearing and slowly tarted getting more involved with clubs. --Summer-- VolunTEEN for the first time in the OR at the Children’s Hospital. 11th Grade - I got the new Harmony Cochlear Implant. I was hearing great and loved being able to hear and talk to my friends. I made traight A’s in school and became really involved with clubs and planning Prom and Homecoming events. Started taking the SAT and ACT’s getting ready for college. --Summer–- VolunTEEN again in the OR at the Children’s Hospital. Got asked out for the first time and became obsessed with Swing Dancing. 12th Grade - Still hearing great, making straight A’s in school, taying involved with clubs and Swing Dancing all the time. I got accepted to my dream college (Berry College) getting amazing cholarships for my hearing and academics. ---MAY 24, 2008 – I GRADUATED FROM HIGH SCHOOL --- My Grandparents and me by my graduation sign! My parents and me My brother, Jonathan, and me (he was ushering with the ROTC at my Graduation) Me with some friends after Graduation Now, as you can probably tell, before I got the Implant my life was pretty boring and I was a bit more kept to myself because I wasn’t hearing that great and I didn’t have much confidence in myself because of my hearing. I was too scared to get involved because I was too afraid I couldn’t hear anyone or that they would laugh at me because I couldn’t hear or understand what everyone was saying. But once I got the implant, my life began to change. I was hearing so much better, I started becoming more confident in myself, became more involved with clubs and Swing Dancing, started dating, my grades got better, and I was happier about myself and my life. And now, in about 7 weeks I’m moving out into my dorm on campus and I get to enjoy the next 4 years of College. Only now… I can’t wait to get involved and to meet new people. :) Posted by Samantha Brilling 3 comments: April 29, 2008 Senior Prom! Hey Everyone! Well, nothing much going on here... just ready for the last few weeks of school to be over. I believe there are about 16 more days left for Seniors! YAY! :D We had our Prom last weekend - it was a lot of fun!! I went with my brother and a group of friends which was pretty cool. We had dinner at a Japanese Habatchi (sp?) Steakhouse, that was neat seeing the chef cook the meal in front of us as he entertained us with his skills. Then we went to Prom - we were basically out on the dance floor the whole entire time just dancing and having a great time. During Prom they had the Senior Walk, so all the seniors walked down these stairs and out onto the red carpet and did the Senior Dance. That was pretty neat... especially since I've waited 4 years for that! :) Then after prom my friends and I went bowling in our formals and had an after party at my house. So we just hung out, played games, and watched movies all night long. So here a few pictures to enjoy from my Senior Prom: - My brother and I - - My mom and I - - My friend Li, and I "fighting" over our Date - - Everyone at dinner - - Everyone out on the dance floor - So yeah, that was definitely a night to remember! :) --*--*--*--*--*--*--*--*--*--*--*--*--*--*--*--*--*--*-- You know, recently someone messaged me about the implant and how he couldn't decide on whether to get the implant now or wait another 5 or 10 years until they come out with something even better. But honestly, it really annoys me when people think like that... sure, there will be many advances in technology in the future. But when it comes to hearing the world - why wait? I can't imagine all the things I'd be missing out on over the next 5 years just waiting for better technology to come out. Besides, Advanced Bionics is inventing better technology and coming out with newer upgrades BUT they are keeping the internal piece the same so people can upgrade their implants for the newer style. Like with me, I was implanted the Auria. But becuase they invented the new processor (keeping the internal piece the same) I was able to upgrade to the new Harmony. So why miss out on all the things you could be hearing now just to see if there will be something better coming out in the future. I rather live for today then to just sit around and miss out... Posted by Samantha Brilling 4 comments: March 10, 2008 Berry Bound... 6 more months :) Alright, so there's been a change of plans.... instead of going to NGCSU, I'm going to BERRY COLLEGE! I got some amazing scholarships to go there and now my dream has come true. It's been my dream school ever ince I was a little girl, but thanks to the scholarships - it's going to happen! :) The Girl Dorms - Where I'll be staying next year. Now I have a choice of having a private room or having a roomate... which do you think is better?! The famous mill on campus... Another part of Clara Hall (the dorms where I'll be staying)... But yeah, I'm really excited!! I'm going to be majoring in Marketing in the Business department. I've sat in some of the classes and it was so much fun! We had a group discusion about McDonalds and how they market and franchise their company all over the world. I also got to hear about the project they're going to be working on right now - I almost wish I could do it now!! :) I don't think I've ever been so excited about taking a class... and sadly I have to wait two years before I get to start on my "major" courses. lol So now, only about six more months till I'm college bound! YAY! :) January 21, 2008 CI users in risk?! (please note, this could be offensive to some... and I'm sorry if it is...) My mom forwarded this quote to me from a "Deaf Blog" and it literally cracked me up and puzzled me why people would even think like that. But here is the quote and maybe you'll laugh at it too... "Look forward to the studies of long-term consequences of CI users, especially emotional and congential development. Let's imagine that one of the country or terrorist group use the electronic magnetic pulses (EMP) weapons to attack the civilian population. The CI users will be mostly vulnerable to the EMP attacks as compared to deaf individuals without CI devices inside themselves. Or the CI users walk accidently past the huge microwaved area, ex. corporate research military base. Their heads surely will explode or fried. Culturally deaf people will apply their savvy.natural insticts to respond to any arising situation much better than individuals with CI. Real freedom from the technopoly or enslave by the artificial intelligence/technology." And now, apparently she is going to have her implant removed because of this... : / First of all... if you are near anything that has a magnetic field such as the MRI or some rollar coasters/theme park rides - there will always be a sign that says its a magnetic field so beware... thats your cue to not go there. And second of all - I would personally rather put myself in risk for the future "magnetic pulses (EMP) weapons" (if there is such a thing) then to not hear anything at all right now. I can't imagine all the things I would be missing out on if I thought about ALL the little crazy risks/consequences of getting it. Its like saying - we are in risk everyday for driving on the streets becuase there are so many DUI and crazy people driving.... so I'm not going to drive my car anymore...I'll just walk. lol I don't mean to sound sassy about it (so I'm sorry if I have offended anyone by this post)... but it just bugs me that people would give up the chance to hear EVERYTHING over a SMALL risk that would probably never ever happen : / January 8, 2008 Update on my Grandpa! Hey Everyone! Sorry about the late update - time flies by way to fast! But I just wanted to tell you a little bit of whats going on... (this is based on my understanding of what he's going through from what he's told me) He got turned on a few weeks ago and he's already doing great and making progress! At first he went through the normal phases of beeps and robotic voices. When he first got turned on he didn't like it much and after a few days it still sounded scratchy but he DID like it better then what he had before. He said he could understand a little bit better then when he had two hearing aids so he continued to work with the implant to help make it better. My grandmother and aunt both work with him on therapy at home everyday training his brain to relearn and understand the sounds of the environment and of people's voices. Can you believe at 85 years old, he's learning to hear all over again?! :) Some of the sounds he's heard so far: - air conditioning - dish washer - family members talking with pretty much all understanding - watched the news and got all of what they were saying - recognized an Elvis song in the background of a movie playing - the president's debate on the TV without closed captians He's still learning to cope with the implant and trying to figure out which hook he likes best, which programs to use, how to wear his hats with the implant, how to keep the implant on with the oxygen tube and glasses, etc. He's been having difficulty with keeping the implant on with the tubing for his oxygen and glasses becuase they all hook on to his ears. At first it was a mess but he's gotten used to it and has learned to keep it all on. :P But as of right now, he's understanding pretty good and is progressing really well! He can communicate with us again and we don't have to keep repeating everything we say and deal with him yelling anymore! His voice has gotten softer and its great having our grandpa back! :) He's still having a hard time with distance becuase it's only been a month but over all he's doing great! He's also having a great time telling all of his friends at his complex about his experiences and everything that he's going through. And of course, everyone is just AMAZED with the Cochlear Implant and wishes they could get one! :) Here are some pictures of him and the implant... He's been to 2 mappings so far and is continueing to progress really well! :) We're all very happy for him!! Posted by Samantha Brilling 2 comments: November 12, 2007 The CI runs in the family... My Grandpa got the Advanced Bionics Cochlear Implant last Wednesday! He got the new Harmony and we are all waiting anxiously for the turn on date which is in about 3 weeks! But until then, he's getting his taples out this Thursday and he's going to have to just deal with "hearing" out of one hearing aid. Here are some of the pictures from the surgery.... My Grandpa Sam Rivituso and my Grandmother Pauline - shortly after recovery My Granpa with his nurse Katherine... she was really nice Me, my Grandpa, and my brother leaving the hospital The scar from when we took off the bandage.... it looked good! (the black line is his glasses, just to let you know lol) As you can tell from the pictures, we were ALL very EXCITED about him getting the implant! Before, he couldn't hear anything and it was getting very difficult when we tried to talk to him. So we're hoping that after a few weeks he's going to be able to hear again and we can all talk to my grandpa normal again! :) Congratulations Papa, you finally got the implant!! :) Now we have three people in the family that has the implant (me, my brother and my grandpa)... and hoepfully my dad will be getting one oon (he's a bit stubborn when it comes to his hearing).... Posted by Samantha Brilling 6 comments: November 1, 2007 Can you hear me now?! It always cracks me up whenever I take off my implant to show my hearing friends and they try to put it on to see if they can hear from it or sometimes they try to speak into the mic to see if I can still hear them! But I have to explain to them that that's not how it works. lol It has to be connected to the magnet in my head...and they always get this confused look on their face... its so funny! :P It reminds me of the guy from the Verizon commercials - "Can you hear me now... how about now?!" And also, when I'm in class and we're all listening to our ipods. I'd be jamming out to my favorite songs and some of my classmates would ask to hear what I'm listening to so I would hand them my direct connect cord and they always get this confused terrified look on their face! They're like "what the heck is that?!" lol And I tell them that its my "headphone set" and they try to stick it in their ear to try to hear from it!!! But then I show them how it connects to my implant and you can see a light bulb pop up above their head!! :P I love doing that to my friends.... it cracks me up! :) Only AWESOME people get to hear out of the Cochlear Implants!! hehe :D Posted by Samantha Brilling 1 comment: September 25, 2007 BUSY BUSY BUSY! But life is going pretty good! My senior year has been great so far - I have straight A's and I'm enjoying my classes so much this year! I've been so busy lately between clubs, sports, applying to colleges, SATs, ACTs, and what-not. My best friend, Zoe, and I go to the school football games every friday and we till go swing dancing on the weekends. Last Saturday we got tickets to the Thrashers Hockey Game - which was awesome!! I love hockey!! :D This week is also Homecoming at our school so this week has been crazy with getting ready for that! Our game is Friday night and then the dance is Saturday night! YAY! I'm so excited!! :) My brother is also doing good - he's enjoying his sophomore year. His implant is doing really good too - he had a rough start from the new implant but now he's understanding really well and calls me on the phone like all the time! :) So that definitly shows he's improving!! He's also gotten really big in ROTC. Him and his friend, Colton, are actually going to be performing an Armed Expidition Routine (sp??) for the Drill Team Competition in the spring! And in case if you don't know what that is... its when a team of ROTC boys (in this case 2 boys) do a routine with different calls and steps with the "gun" and spinning it around and doing all these tricks with it. So it should be pretty awesome to see him out there!! :) He's also playing second base man for the ROTC softball team! His tournament is in like 2 weeks! GO JONATHAN!!! So I'm in the process of applying to colleges. I've narrowed it down to my top three which are North Georgia College and State University (NGCSU), Berry College, and Georgia College and State University (GCSU). I've had my senior meeting with my counselor which was pretty exciting talking about colleges and life after high school and graduation! I was pretty excited about that meeting but my mom was pretty sad! haha :) So I've been writing my essays for the colleges and I thought I'd post one up here and see what yall think! Here is one of my essays: Topic for Freshman Essay: “As a part of our mission to provide students with a liberal arts education, Georgia College & State University strives to create an atmosphere that instills in students exceptional qualities of mind and character including respect for human diversity and individuality. Given your own individual background, life experiences, and personal identity, how will you contribute to the overall diversity of the tudent body at GCSU?” College Essay Rough Draft: No matter who we are, where we’re from, or what our backgrounds are, we all come together to achieve one common goal: a goal of overcoming all obstacles and achieving success. In achieving our goal, we must all work together bringing diversity with different backgrounds and points of view about life, to achieve success and to make a difference. With my background of being born with a disability, a passion of helping or mentoring others and the motivation of being an active member in my ociety will help bring diversity to the student body of Georgia College and State University (GCSU). Over the years, I’ve had to overcome my disability of being hearing impaired. I was born profoundly deaf and went through Auditory-Verbal Therapy to learn how to hear and speak and to become an independent communicator without the use of sign language and lip reading. My journey wasn’t over with just hearing aids and years of therapy. In 2005, my hearing started to deteriorate and I went through major urgery to get a Cochlear Implant. The cochlear implant is like a more “high-tech implantable hearing aid” which helps me to hear even better. But along with getting the new cochlear implant, I had to relearn ounds all over again while I was still going to high school, making good grades, and continuing to be an active member in various clubs. After going through a major surgery, I realized I could help others who are going through the same situations. So I decided to work in the Operating room as a “VolunTEEN” at the Atlanta Children’s Hospital, which I have done for several years. Working there allowed me to help other families deal with emotions that come with having their child go through a major surgery. Even though I volunteered my free time at the Children’s Hospital, I also kept an updated online Blogspot journal (www.samshearinglife.blogspot.com), entitled “Sam’s Hearing Life.” I posted about my experiences while going through surgery and about the process of relearning sounds all over again. This was designed to help mentor other families who are in the same situation as I was, who also choose to become independent communicators me. During my high school years, I realized that it’s important to not only maintain a good grade point average but to also be an active member in clubs that support community service, such as Key Club and Girl Scouts. As a member I help make my community a better place by cleaning local parks to make it fun and safe for neighborhood children, package up food with Project Open Hands for AIDS victims, and I also help clean local pet shelters such as Paws Atlanta. I also use my leadership kills, organizational skills and creativity to help with school committees such as Homecoming and Prom. I believe what makes a unique college experience is one with a diverse group of people and backgrounds who all come together to achieve uccess by working together and helping others. And because of my well rounded background and desire to overcome my disability, I believe I can adjust to any environment, such as GCSU. I would come with enthusiasm and dedication to be able to excel academically as well as to share my experiences to help others overcome their struggles from dealing with a new environment, challenging personalities, and a new way of life away from the comforts of home. I also believe that my passion for helping others and being involved will allow me to continue to be involved with new community service clubs, such as Circle K, to make GCSU and Milledgeville a better place and to be able to call it my new home. So I hope for the best and just wait and see what the colleges say!! Gosh the wating part is the worst part ever!! eeeeek! But yeah.... I don't know what else to say at this point. Jonathan and I are both doing great in school, clubs, and with our implants. This year, Jonathan and I are also actually officers for Key Club which is pretty fun becuase it makes us look important! He's 10th grade representative and I'm Bulliten Editor. :) Oh by the way - Jonathan also just got his liscense this weekend and he's going to get his motorcycle permit this weekend! YIKES! So he's pretty excited about being able to drive...but one thing he's going to have to remember - the second car is MY CAR and I GET PRIORITY!!! hehe :D Here are some updated pictures of us... Me, My Mom, and my Brother at a Kareokee party with some family friends!! :) Me and my best friend Zoe going to the Tucker Football game! YAY! Jonathan and I when we went hiking in North Carolina - SO BEAUTIFUL THERE!!! :D My Senior Graduation Picture :D Posted by Samantha Brilling 9 comments: August 11, 2007 Spreading the word around... Just in case you didn't notice...I posted up some links on the right ide on my website. One is for the Auditory Verbal Center, Inc. Thats the center that taught me to hear and speak. The next one is the homepage for Advanced Bionics, the implant company that I have (and ABSOLUTLY LOVE!). And the others are friends with Cochlear Implants and AVC graduates from the center I graduated from. They vary in ages, so you get a wide variety of points of views and lifestyles with the Cochlear Implants. But they're all really good, so if you're interested...check them out too and see what they have to say! : ) Just thought I'd point that out for those curious minds out there... August 9, 2007 Who's ready for Senior Year?!?! I AM! I AM! I AM! I AM! I AM! I AM! : ) Yesterday we had registration at school...that was pretty much really hectic! The only awesome thing about registration yesterday was tanding in the SENIOR LINE!!! haha I was so excited!! :D I also got to ee some old friends that I havn't seen all summer and my teachers from last year!! That was pretty fun! But today I had to go back beacuse I had an appointment with my new counselor to talk about my schedule, introduce myself, explain my hearing, and what-not. And of course my mom told him my awesome story with the implant and how I was born deaf and how I can now hear and peak...and of course he was just blown away and couldn't believe that my brother and I were born deaf! haha Its amazing how people's face expressions change once you tell them that you're deaf!! haha : ) So here are my classes for next year... 1. AP Microeconomics 2. Environmental Science 3. British Literature 4. Algebra III 5. Banking/ Finance 6. Bussiness Document Processing 7. Introduction to Technology I'm looking forward to my classes this year....the courses seem like they may be a little challenging but for some reason I'm excited! So we'll see when I start next Monday! But you know what else?! Today, I also got my first Parking spot at Lakeside!!! I was soo excited!! I didn't get one last year (even though I could have) but I got one for this year!! YAY! I got a little sticker to put on my back window and we went out to find the spot...and lucky me, my spot is one of the few that were in the hade!! YAY! YAY! Heres a picture of me in my parking spot...can you tell I was excited?! haha :D So yeah, this year should be a pretty intersting year! I'm a senior and my brother is a Sophomore!! I can't wait till football time starts! Then HOMECOMING! My favorite part of the year!! haha Posted by Samantha Brilling No comments: August 5, 2007 We LOVE our Direct Connect! Hey - Just thought you might enjoy a picture of the implant with the direct connet. We went hiking this weekend in North Carolina and so my brother and I both took our ipods to listen to in the car. And lets just say, now that my brother got the new harmony - he has become OBSESSED with the new direct connect!! haha So now both my brother and I won't go anywhere without it!! haha : ) Here is a picture of my brother with his implant and the direct connect attacted to it. For those of you who don't know - the direct connect is like a headphone set for the Advanced Bionics users. Its the black cord that hangs down from the front of the implant that connects to the ipod or to whatever you're listening to (cell phone, ipod, computer, mp3 player, etc.)... And just another thing to notice...my brother got his implant about a month and a half ago and his hair and skin is already back to normal! I know there are alot of parents out there that are worried about what their kids are going to look like afterwards and scared about the whole hair thing...but his hair grew back, you can't really see the scar, and he's already had a hair cut since after the surgery. So your hair will grow back and it'll go back to normal!! Just another note for those worried parents... : ) August 1, 2007 VolunTEEN at the Children's Hospital My last day as a VolunTEEN at the children's Hospital was today! :( I could only do it for the summer, and becuase of school starting in two weeks, today was the last day for us. I got to work in the Operating Room with my friend Sumon. We had fun helping all the nurses, watching the different surgeries, helping the hospital move into the new building (which was so confusing lol), and learning about what its like to be a nurse at the hospital! My favorite part was seeing all the surgeries - I got to see intestines, the inside of a stomach, lungs, and a heart! Who knows, maybe I'll become a nurse working in the OR one day... :) Here's a picture with me and the people I worked with in our lovely crubs... Sumon, Elizabeth, Mrs. June (the lady in charge of us) and then me... July 30, 2007 An Emotional Summer... So much has happened this summer - I don’t know where to start! Well...in May of this year, I got my new harmony! I was so excited!! : ) I went to go get it mapped and had my programs set to: P1 – 120 – 60 IDR P2 – Hi Res – 60 IDR P3 – 120 – 80 IDR But being that I don’t like to change my programs through out the day, I tend to just stay on program 3. I can’t tell a difference from the Auria and the New Harmony when I’m just talking to people and when I’m in my normal environments. But when I’m listening to music…I can see the changes. I’ve been able to hear the words to the songs better, I’ve also been able to get more of the instruments from the background too! There have been a couple songs that I liked before I got the Harmony, but never really understood the words and what the song was about…but once I listened to it with the Harmony, I understood the words and finally got the meaning of the whole song! And now its one of my favorites! : ) Its so weird to hear different songs on the radio and compare it to what it used to sound like and to what it sounds like now! Some of them have been good changes, but then again, some of them have been kind of wierd...like this one time - I listened to this one song that I liked before and I listened to it with the Harmony and heard what it REALLY sounded like! And with the Harmony, it sounded sooo wierd and different! It sounded anymore! haha But for most of the songs...they sound so much better! So thats a good thing! : ) But yeah, I really like the Harmony, not only because of the more channels and how the music sounds… but also because of the battery life! The battery life is TRULY AMAZING!! AND SUCH A LIFE-SAVER!! For me, I was lucky because with the Auria I only had to change my battery twice a day….but even still, I always had to worry about my batteries charging at night, making sure I had my batteries with me and what-not. But now, I just use the one on my implant and I’m good for the WHOLE DAY! I still carry one battery with me as an emergency backup if I need it, but honestly I don’t even need to carry an extra battery with me! The one battery lasts all day long and I absolutely LOVE it!! : ) So everything is going great with me….but unfortunately this summer and been a rough few months for my younger brother, Jonathan (16). At the end of May, his C1 internal implant (after 9 ½ years of having it) failed. So after the “confirmation” of the device failure he went into urgery to get the new Harmony. Lucky for him, the doctor was able to just take out the old one and put the new one right in the same spot on the same side. We were really happy about that because we both want to keep the other ear open for down-the-road emergencies and for the more advanced technologies that are coming out. So then after the surgery he waited a few weeks to get turned on. Those few weeks were probably the toughest weeks we all had to go through! He doesn’t lip read or use ign language (because we went through Auditory Verbal therapy to learn to hear and speak) so basically we had to walk around with a pen and paper so we could even communicate with him and to tell him what’s going on! I don't think I've ever seen my brother so depressed and bored! We were also all really nervous about the whole thing because we weren’t sure how this was going to turn out. We didn’t know if he was going to like it, if it was going to even work, or if he’s going to have to relearn the sounds all over again. But then the turning on day came… and it worked! But as it turns out, it did start off to be beeps and it moved into the “robotic” sounds and now it sounds like normal people. Its been about 2 months and he’s now hearing fine! I think because he had the implant for the last 9 ½ years in the same ear, the process of understanding with the new one was quicker and easier for him then for someone just getting it for the first time. But after this rough and emotional summer, he’s now really liking the implant and seems to be hearing great! He wears the new color caps, loves the direct-connect to listen to his ipod with, and most of all… he loves the battery life! With the C1, he had to go through 6-8 batteries A DAY and now he only uses one battery for the whole day! So now, that my brother and I both have the new harmony we have fun with sharing the new color caps and jazzing up our implants! Now, we're both stylish AB Harmony Implant users!! haha : ) Here is a picture of me and Jonathan swing dancing at a local concert a few days ago.... But on the flip side...even though this summer has been really emotional and crazy for us, we still had a great summer! This summer, I worked in the Operating Room at the Children's Hospital again and I absolutly love it there! I went to Texas for 2 weeks and cruised around San Antonio with my Mom. And I've also been working at AVC and hanging out with all my friends. And for Jonathan - for the last five weeks he went to the Riverside Military Academy to take Algebra II and to see whats its like to be in the military. Now, you're probably confused and wondering why he went off to the military academy when he JUST got the implant... well he actually signed up before the imlant failed and nothing was going to top him from going (even the implant failure). And much to our urprise, the teachers and sargents were all really cool with him about the implant and really worked with him! He took a whole years-worth of Algebra II in 5 weeks ( and PASSED) and had a great time playing sports and working out with all the other guys! Here is a picture of Jonathan and me from the Military Ball (you can kind of see him in his uniform)... So yeah, you never know what life is going to bring you.... : ) May 11, 2007 FINALLY! ...an update! : ) Wow, I haven’t posted in while! YIKES! I’m sorry…I keep forgetting to post! : / But yeah, things are going good. Last week I went to get remapped because I felt like I was loosing most of what people are saying. So we changed my settings and put my implant in the cleaner (wow-that cleaner thing really makes a difference! lol). So right now my settings are set the following: program 3 – 50 - quite environment program 2 – 60 - noisy program 1 – 80 - cafeteria or very noisy environment She set me on these settings because it’s supposed to help me hear better when I’m driving in a car, listening to music, and eating in the cafeteria or a restaurant. So my homework was to experiment with the different programs and see if it helps make a difference. And right now, I’m in the process of doing that. Although I gotta say, I hate changing the programs throughout the day because for some reason it takes so long for the implant to switch over. And by the time I witch over, I’ve already missed a lot. But I think that that’s omething that will get better with more practice on switching BEFORE I get there! : / But I’m working on it… But other then that, the new mapping seems to work good…it’s defiantly better then what I had! Oh, the other day I also put an order in for my NEW HARMONY! YAY! Thanks to my mom for helping me get that, maybe now I’ll be able to HEAR EVEN MORE! Now, I’m not even sure if I should be happy or a little nervous! Because quite honestly, it gets kind of annoying to hear my dog lick herself while we’re watching TV! Haha, just kidding…I’m looking forward to it! : ) I should be getting it in the next few weeks, so it should be interesting to see the differences between the Auria and Harmony. They say that the Harmony helps make music a lot more clearer – YAY! And being that music is everything to me…I’m looking REALLY forward to that! : ) But other then that, life has been going good! I just turned 18, I went on my first date, I've been to two Proms, I’m touring colleges, and also I’m taking Swing Dance Lessons! My junior year has definitely been the best so far, and it’s all because of my implant! My freshman year ucked because I had hearing aids (Superos by Phonak), and missed A LOT. Then my sophomore year, I was just getting the implant and I was trying to get used to it. And now, it’s the end of my junior year and I’m doing GREAT with hearing everyone and making all A’s and B’s!! I went on my first date a few weeks ago. I was soo excited! Because I didn’t know how people would react to me being deaf and this guy asked me out!! I was honestly really nervous about it because I didn’t know if he knew about my hearing or not. But he was actually pretty cool about it! We went to the park and we were talking and he asked what that thing was on my ear. So I explained it to him and his mouth just dropped! Haha, he couldn’t believe that I was deaf! But he was urprisingly cool with it which made me really happy and a lot more confident about my hearing. And what’s so funny about it all is that he’s actually part deaf too! And I didn’t realize that either! He can’t hear out of his left ear either which was kind of neat to find out! : ) So you never know what you might learn about someone else, huh?!? So yeah – I guess I was just imagining the worst when I thought about telling people about my hearing. People are actually more understanding about your hearing then you realize! And that really makes me happy! : ) I’m also touring colleges right now! I went to tour Georgia College and State University (GC&SU) and I absolutely LOVED that place!! I am looking soooo forward to college, no offense to mom, but I am!! We got to tour the dorms, see the classes, and eat in the cafeteria and what-not. The dorms were pretty cool. It’s more of a quad-suite so I would have a roommate. And hopefully my roommate won’t mind my vibrating alarm clock!! Haha! So yeah, right now that’s my first choice in colleges (go GC&SU!) but I’m also touring some others such as University of West Georgia and Berry College. SO we’ll see… I’m also taking Swing Dance Lessons which is A LOT of fun! My brother is actually my swing dance partner (he also has the implant)! We’re not as good as the dancers on Dancing with the Stars (…not yet at least! hehe) but we’re having fun learning the dance moves and listening to all the jazz and swing dance music! ; ) So yeah, life is going good…I love my implant! I’m definitely enjoying my life a lot more!! I’m making better grades, hearing more things, trying new things such as dance lessons and running for office in clubs, and I’m also getting better at being more vocal about my hearing! : ) February 13, 2007 Survey.... My friend wanted me to answer this survey for her project in college, and I thought it'd be interesting to post on here. I thought they were good questions and I figured they might be helpful to you....so enjoy! 1. What age were you when you received the Implant? I got the implant in april of 2005 when I was just turning 16 years old. 2. Has Getting the implant limited what you can do? Yes, there are some activites that I have to avoid now becuase I have the implant, for example different things with magnetic fiels such as ome rollar coasters, MRI's, and plastic slides. 3. How does the Implant help you with your daily life? The implant helps me to hear no matter where I am, such as the cafeteria, outside, at home, or even on the phone. I wasn't functioning good with two hearing aids, so thats why I got the implant. And now I can hear alot more and its helped me to understand people, music and environmental sounds better. 4. Is it noticeable to other people when you first meet them? No, becuase the cochlear implant is a small device that sits behind my ear. And being that I have longer hair, its hard to see it because its being hid. Plus, people don't "look" for the implant becuase they don't realize that I'm deaf when they meet me because my speech quality is so good. I was taught spoken language through the auditory verbal approach to where I don't lip read or use sign language. 5. How has the implant affected your life? Yes, dramtically. With it my grades have gone up becuase I can hear now, I have been more involved with clubs such as Key Club and Girl Scouts, I have volunteered at differnt places, and I can even get a job now because I can hear what I have to do. And of course music is my favorite thing, now I can really enjoy the music and words. But then again, its also frustrating because I always have to make sure I have charged batteries to get me through the day. Because if my batteries go dead, I can not hear a thing and I'm in a silent world. 6. If you had not gotten the implant how would your life be different? If I had not gotten the implant, I would not have been involved with the clubs, volunteering, and plus I probably wouldn't be at the public chool that I am now. I also wouldn't have been able to do some things uch as going to concerts, movies, and plays. Without the implant, I would have very few friends, I wouldn't be as socialble and I wouldn't be where I am today. But yeah, it was a short survey but it had some interesting points about the implant... December 6, 2006 Interesting Quote... Well the other day I was reading this magazine called "Choices" in interior design. And one of the articles in the magazine was about a hearing loss and all the things you do that makes your hearing worse and all the things you can do to prevent a hearing loss. In one part, it was trying to explain what a hearing loss is like and this is how American Speech-Language Hearing Association (ASHA) put it.... "It's like a dining room chandelier with bulbs that go out. Every day, it dims a little bit until one day you think, 'it's dark in here,' but then its too late to turn the light back on." But anyways, I thought it was pretty funny how they relate deaf people as chandeliers!! : P So my friend and I were joking around with each other about this and teasing me about being a chandelier!! At first I laughed and I couldn't believe that they were saying that but once you think about it...in a way a hearing loss is like dying light bulbs!! But in my case, I got high-tech, life-time guaranteed new light bulbs!! : ) I have my speech which will last a lifetime (thanks to AVC) and my new high-tech Cochlear Implant which will also last me forever!! hehe So now, I am a very bright and shiny chandelier!!!! : ) November 29, 2006 When do Direct Connects come in handy?? Well today, I went on a field trip with my Photography class to the High Museum. That was interesting. But we all had to walk around with recorders and headphones that was talking about all the pictures. I couldn't hear a thing on the head phones so guess what...I pulled out my Direct connect from my purse, plugged it in...and ta-da! I can HEAR!!! YAY! YAY! YAY! haha, who would ever have thought that that was going to come in handy?? I usually use it just to listen to my music on my MP3 player, I never thought I'd need it for something else. So for all of you who have the implant....get the Direct Connect!!! You never know when you'll need it!!! October 24, 2006 Update Well things are going good with me and my Implant. I'm a Junior in High School and school is going great! I'm aceing all of my classes, which is really exciting! YAY! Last week was Homecoming, that was bunches of fun!! Friday night was our homecoming game, my brother and I stood up in the front cheering for the Lakeside Vikings. And believe it or not...we WON!!! YAY! YAY! YAY! That was really really really exciting to win our Homecoming Game!!! : ) Then saturday night, we had our Homecoming Dance. Jonathan (my brother) was my date so we danced and had alot of fun the whole night!!! It was pretty cool to be able to hear the beats and be able to follow along with the music. Oh, the other day my brother and I spoke on a panel in front of a bunch of therapists, parents, and teachers at this Advanced Bionics Meeting. That was pretty interesting....apparently we were really good!! : ) They asked us questions about how we deal with the implant at school, the differences between the Hearing Aid and the Implant, Our favorite and least favorite things about the implant, etc. so I guess that went well. I was glad that we were there to help answer questions! But other than that, everything seems to be going pretty good. August 9, 2006 Last day as a Volunteen!! The other week I had my last day of being a volunteen at Egleston Children's Hospital. I have been working there in the Operating Room every tuesday this summer and it has definatly been the highlight of my ummer! I got to help patients get ready for surgery, get the operating rooms ready for surgery and I also got to help nurses during surgery!! And whats so cool about it is that I got to get all dressed up in crubs, a hat, and a mask! And I still was able to hear everyone!! But there is one thing that my mentor, June Malcolm, and I will always remember! The story when she learned I was hearing impaired. Ok, on the first day of working there, June was giving me a tour around and telling me everything I've got to do, etc. And we come in front of the OR room where Dr. Todd does his implant surgerys. And June was getting ready to tell me this whole "speel" about what the cochelar implant is and what its for. And immediatly I bursted out "I GOT ONE!!". hahaha, I was so excited to be able to see them getting one that I just bursted that out! And the look on June's face will always stick with me! She was so suprised and couldn't believe that I was deaf and I was working in the Operating Room! So then from then on, she told all the nurses and advisers, etc. about my hearing and about our story! And everyone that she told was always shocked and so suprised that I was deaf!! So yeah, I guess you can say....nothing will get in the way of getting what you want!! And I wanted to be a volunteen at Egleston and I got it!! And I had the BEST TIME OF MY LIFE!! This is a picture of June, Me, and Cynthia. Notice the scrubs - don't we look cute!! hehe : ) Posted by Samantha Brilling 5 comments: August 7, 2006 Swimming with friends....finally! I just got back from going to a mountain house with a group of my friends for the weekend. I had an awesome time!! We got to hang out, go wimming, canoeing, hiking, listen to music, etc. But the main thing I really wanted to share was about the swimming, I've never been much of a swimmer and I always tried to avoid swimming with a bunch of people as much as I could. And the reason being was my hearing. I was to embarresed and almost scared to swim with a bunch of people. I was always worried about missing what people would be saying. I don't lip read and I don't do sign so its kind of hard and wierd to wim with a bunch of people. And plus the fact, I always felt wierd just sitting there while everyone else was having a great time chatting and playing games. But for the first time, I actually swam with a whole group of people! It was alot easier than I thought it would be! My best friend Zoe was there too, so she kind of stuck by my side to help with what people were saying and kind of guide me to where we were all going, etc. And when ever people would start talking to me while I'm in the water (which would be quite often) zoe would explain to them that I can't hear. And everything would be fine! But then at one point I sat on the dock (with my aids on) while everyone else swam and I was listening to what everyone was saying. And at one point this guy was talking to us (me and zoe) and zoe was explaing to him about my hearing...and suprisingly he was realy accepting of it! All my life I have tried to keep my hearing as much of a secret as I could becuase I was too embarresed of what people would think of me. But this weekend I was so suprised and it felt so good to be able to tell people and they don't treat me differently! Everyone was really nice and treid to help me with whatever we were doing in the water. I don't know what I was thinking on how poeple felt about my hearing! I wish I had expeirenced this earlier in my life. Becuase now I feel like I can come out of my "shell", you know? It felt sooo good to be able to wim and hang out with a bunch of friends and knowing that they all know about my hearing and they have no problem with it! Gosh, this feels great!! : ) June 28, 2006 Remapping The other day I got remapped! I've been needing it for awhile but I've been dreading it because its usually a pain to do it! But I decided that it was time and I need to add some "tweaks" to it because I wasn't really hearing as good as I usually was. : ( So anyways...I went to a new audiologist and we did all the programming we needed. First I had to say weather or not the beeping I heard was comfortable or not. Then I had to compare between two different beeps to try to "levalize" them. That part was hard because sometimes you had to compare between a low pitch beep and a high pitch beep...And we all know the high pitch beep would seem louder!! But I had to try to levalize them, so my hearing would be all leveled and not all over the place. (???) So after all that annoying and pain-in-the-butt beeps (no offense to those audiologists reading this)...I finally got it to where I like it!! Everything sounded really clear and it was comfortable and I was finally really really happy with what I was hearing! Then after that, we added some settings to the other programs. Rene (my audiologist) said that since you have 3 programs to switch to, you hould use them! So I thought, what the heck...I'll give it a try! I don't normally switch around to different programs because I like to just put it on in the morning and not have to worry about changing any programs...I've always been like that, even with my hearing aids! But anyways, we put the regular setting on the first program, we put a etting the turns down the background on the second program, and on the third program we put a setting that's really loud - that's apparently really good for music and trying to get everything like in a library. My Programs: P1 = 60 - normal P2 = 50 - noisy places P3 = 80 - try for music, libarys, etc. Then we put me in a sound booth and tested to see what all I was actually hearing with my new settings. And it turns out that I was actually doing really well!!! I didn't think I was going to do all that great because I've been wearing my hearing aid, but I guess it really doesn't matter! My Testing Results: 55 Quiet 94% 45/55 +10 Noise 77% 65 Quiet 100% So now, I've been wearing only my implant a lot more. I've been more comfortable with it! I mean its still weird not getting any sounds out of my left ear but that'll take time to get used to for anyone! So yeah....I'm happy!! I can finally go without my hearing aid!!! YAY! So I guess its a good thing to get remapped!! haha June 19, 2006 Troop Cruise I got back from a cruise with my Girl Scout Troop!! It was alot of fun! I did a bunch of things I've never done before! : ) To me, the highlight of the cruise was the Deck Party, Snorkling, and the Theater!!! Well first of all....one of the nights, they have a deck party and for the first time....I actually danced to "fast" music. I'm not much of a dancer to start with but since I could here it and I could alctually hear the rythem...I got to dance!! YAY! I danced till 1 in the morning (non stop) YAY ME!! Then I went snorkling...now, going in the water in public was never a big thing for me becuase I was too afraid that I wouldn't hear anyone or I'd miss something someone said. But I actually went snorkling with my troop leader, and I gotta say it was AWESOME!! I was sooo glad I went!! Then after dinner, we would all go to the theater...we had comedians for 2 of the nights and I heard everything they said!! Gosh, they were hilarious!! haha, I don't think I've ever enjoyed a show like I did there!! And on the other nights...we had musicals. And I heard everything they were saying!!! : D But yeah...those were the highlights of the cruise!! But in case if you were wondering, we went on a 5 day cruise down to the bahamas to see Grand Turk, Nassau, and Half Moon Key (my favorite island!!) May 9, 2006 Questions and Answers... I’ve had some questions about the last post on my hair and the implant, Question: Do you wear your implant on top of your hair or underneath it?? Answer: Me personally wear it underneath. When I wear my hair up I try to put it underneath but there have been times, where I would have to put it on top due to the hairstyle (ex. Pigtails or a Ponytail). But when I wear my hair down…its always underneath. I have seen people wear both ways, so I guess it really depends on your preference and your hair! Question: Do people see it more easily than a hearing aid? Answer: On me…no, if anything they notice the hearing aid more than the implant! I think a lot of people think that your implant is probably ome new technology for listening to music or one of those “blue tooth” things that you see people wearing for their cell phones. And I say this because I know that almost every time we get in an elevator omebody asks Jonathan what he’s listening to…because they see the implant and assume that its like an MP3 player or something. But then that’s when we tell them what it is and what its for and they think its pretty cool and amazing that we can hear and talk even though we are deaf!! : ) I hope that helps a little bit...and if you have any other questions - ASK ME! I love answering questions that anyone has!! : ) April 18, 2006 Wearing My Hair Up....FINALLY!!! hehe : ) Well today was the first day I wore my hair up to school since I got the implant!! I never did, becuase I was too afraid of what people would say. And plus, I wasn't sure what was going to happen for when my battery dies...beacuse when it dies, I take the implant off and change the battery. But if my hair is up...then I was afraid I was going to mess up me hair when I take it off!! : / But since the school is re-doing their air conditioning systems....its like "boiling" in the chool!!! : ) So I wore my hair up to keep me cool! YAY! I was kind of nervous and hesitent to wear it up, but I decided it was time to just let everyone see it and just accept what they say. But as it comes to my shock...nobody said anything!! : D Well except when I was in the bathroom washing my hands...this girl was staring at my head. So I'm thinking she was looking at my hearing aid. hahaha. But I didn't say anything...I just kept on going! hehe : ) But yeah...Its a big differnce between the hearing aid and the cochlear implant!! And my golly...I gotta say, the implant is ALOT nicer looking than the hearing aid and plus the fact...you can color match!!!!! hehe Hearing Aid (pic. 1) AB Cochlear Implant (pic. 2) April 14, 2006 Oh, and I almost forgot....exactly one year ago (last April) I was dreaming about getting the implant....and look where I am now!! My Surgery was April 13th and I was turned on May 17th. It has been exactly One Year and One day since I got the impant!!! Coolies! : ) WOW....its been awhile!! Sorry about that!! I guess I aught to post, huh?? Well lets see, alots been going on...but first things first, my implant is doing great! I can hear everything with it and it sounds normal! And I absolutly love having the implant...and I gotta say that the main think that I like about it is the Direct Connect! I love listening to music now because I don't have to worry about it being too loud for every one else!! hehe. Then not too long ago, I was in a photo Shoot for Advanced Bionics! That was fun! I wasn't looking forward to it in the beginning becuase I didn't know what to expect but it actually turned out to be quite interesting!! This photographer (Gill-spelling?) went camping with us over spring break to take pictures of us doing things like canoeing, talking on the cell phone, listening to music, making a fire, grilling, etc. so I hope he got some good pictures. I hope we can get coppies, that would be cool! And who knows...maybe you'll see me or my brother in an Advanced Bionics Flier. Coolies!! Oh, and another thing....I got asked to my first Prom!! YAY! I was really shocked though, becuase I thought I was never going to get asked out or that I wasn't going to hear a guy asking me out becuase of my hearing!!! And I never thought a guy would want to date a deaf girl...but it turns out that I was wrong! haha And it makes me feel good becuase of all that time of worrying, it was really all for nothing! But yeah, the Prom is next weekend and I'm kind of nervous becuase I don't know how the music will sound to me. I went to a Homecoming dance and it was kind of like a bunch of noise....but I hope I'll be able to hear a little bit of the beats and the rythem this time. But I'll make sure I post to let you know. : ) So to all you girls waiting to be asked out...it will happen!! hehe And I guess this proves that the world really doesn't care about you being deaf!! They just think its cool that you can hear them!! : ) November 28, 2005 Realizing why its a hard change from HA to CI Every now and then I like to experiment with my hearing aid and Cochlear Implant by listening with my hearing aid only for a few minutes, then I switch to my cochlear implant for a few minutes and then I switch to both. And you know sometimes I get the wierdest results. Sometimes I can hear better with just the implant and ometimes I can hear better with both. But the hearing aid never win. Its either both or just the implant. But anyways, I went to the movies the other day and I was experimenting with them to see which one makes the movie sound best. So I turned off my hearing aid and listened for a few minutes to the movie. And that was the wierdest feeling! It sounds like I don't have sound on the other side. Like all the sound comes in on one side. And that makes me very uncomfortable!! I had to keep looking over to see if someone was talking to me. Its really freaky not having sound come in on the other ide. I guess its more of a security thing. So it makes you think if Bilateral is really a good thing or not and if it really makes a difference. But only someone brave enough would get one. I don't think I would ever want to get another implant....Don't get me wrong, because I love my implant but I think I'm too attached to my hearing aid to let it go. You know? And then you know another great thing about having a hearing aid in one ear is when the battery dies, which is always in the middle of my last class, I can still hear a little bit of what the teacher is saying while I'm changing the battery on my implant. So the hearing aid is like my backup. And since I'm on this topic.....I have never had someone ask me what that thing was on my ear! People have always said something about my hearing aid but not my implant. I thought people would be asking what that was because its bigger and filled with colors. haha. But that's almost a relief. Because I like it when people think of me as a normal person...And not a disability. But anyways, I thought I'd share that with you. November 19, 2005 Progress Hey! Yesterday I had a mapping session. That went ok. We tried to change the program but I didn't like it at all. It sounded too high pitch and mechanical. So instead, we decided to just keep the other program, the one that I walked in with. But since I was wearing it at about 8 o'clock, we moved it to the 12 o'clock spot. So now I've been wearing just my implant as much as I can. Yesterday I watched a whole movie with just my implant....That may not sound like a lot but for me it is. And whats shocking is that I actually got everything they said! But you know, its really weird wearing just an implant because its like you don't get any sound from the other side. All the sound comes in my right side, so I keep feeling like I forgot to turn on my hearing aid on my left side. And the urge to turn it on is so frustrating! But it really helps to just put the hearing aid in my pocket. So that way, I can't just reach up to turn it on quickly. But anyways, another thing that we did at my appointment was that we changed the extra magnet to a "half strength" which helps hold my implant on better. Before I had to hold my magnet on with another magnet on the outside. Which got really annoying because it magnetized to EVERYTHING!! I tried to put the magnet on the inside but after 20 or 30 minutes of wearing it, I would get a really bad headache. But now after getting this new magnet, I haven't had a headache and it holds my implant on ALOT better! So I'm really excited about not having to have the outside magnet on. YAY!! Well I guess this is it for now. November 10, 2005 Back into Therapy... Hey everyone! Well I don't have much to say at this point. But I had a therapy ession not to long ago....and its about time too! My last therapy ession was before school started (beginning of August). Once school tarted I just got to busy and had no time to do it. But I finally put my foot down and got back into therapy. So last week I had a therapy session and it went great! I think my therapist and my mom was amazed and shocked at how well I was doing with just the implant. And I was too! I was soo nervous about therapy that I was actually dreading it. I haven't been going just with my implant so I wasn't sure how I was going to do. But I actually did well! Since I'm in school and I have homework and club meetings, we decided to have therapy about once a month or every couple of weeks. So at each ession, she would give me alot of homework to do. And whenever we had time, my mom and I would do a little bit. So I'm really excited about how things are going with me and the implant. I've been listening to my music too, so hopefully my goal will be reached before Christmas......I'm hoping!!! (keep your fingers crossed!) Well I guess this is it for now, I just wanted to let you know what I've been doing lately. Later! October 14, 2005 Promise to myself Well, I made a promise to myself and I plan on keeping it! You want to know what the promise is?!?! Well I promise that I will work with my implant by praticing on listening to music, and hearing people without my hearing aid. And if I'm successful at doing this....I'm going to buy myself an ipod! Yeah, I know it may sound weird but I really want to do it, beacuse if I get really good at listening to music with just my implant, I can use the "wireless" headphone set for my implant so I'll look like everyone else. I won't have to deal with those big and bulky headphones. Cool huh?!?! Well I'll keep you posted on how I'm doing. Until then.... Newer Posts Older Posts Home Subscribe to: Posts (Atom) Samantha and her brother, Jonathan About Me My Photo Samantha Brilling Atlanta, Georgia, United States I was born profoundly deaf but wasn’t diagnosed until the age of two, which is when I immediately started wearing two hearing aids and going through Auditory Verbal Therapy. My hearing and discrimination got worse in 2005, which is when I got my Advanced Bionics Cochlear Implant. Now I wear the CI on my right ear and a hearing aid on my left. I'm a student at North Georgia College and State University majoring in Marketing and Graphic Design. View my complete profile I am a BEA Mentor because: "I enjoy mentoring people who are going through the same situations that I went through in deciding to get the implant, going through the urgery, and learning how to hear all over again or even for the first time. I got my CI at the end of my freshman year in High School so I can remember what it was like before I got the implant and how my life has changed ever since. I would like to share my experiences with other people from a teenager's perspective and to share the stories about my younger brother Jonathan and my Grandpa Sam, both of whom have the CI as well. My brother was implanted at age 5 and my grandpa was implanted at age 85." -Click Picture to learn more!- With my Cochlear Implant, I can: "Be a normal teenager/young adult and enjoy my college experience with my regular hearing peers. Now that I'm away at college, I can call my family and tell them all about my day and about the things going on in my life." My Favorite Sounds: "I love hearing my family talking, laughing and having a great time with me. The horn/beeps from my new car when I lock it. Music from the direct connect cord to my ipod when I go jogging, laying on the beach, etc. Music in the background at a restaurant or a coffee shop." Blog Archive Other Resources: Adult Bloggers: Young Adult/Teen Bloggers: Pediatric Bloggers: Other ways to find me: Samantha Brilling's Facebook profile Twitter Email: CreativeSam1@aol.com AIM: CreativeSam1 Skype: Bluelime0501 Subscribe To SamsHearingLife [arrow_dropdown.gif] Posts [subscribe-netvibes.png] [subscribe-yahoo.png] [icon_feed12.png] Atom [arrow_dropdown.gif] All Comments Sam's Hearing Life September 24, 2005 September 24, 05 Hey everyone! Well things have been going good here. I've been wearing my hearing aid and my implant and it seems to really help me alot. I've noticed that I can't function very well with just my hearing aid so I always have to wear my implant....which is a good thing!! It shows that the implant really deos help me and I hear better with the implant. Its been about 4 months since I've had this implant and I am still noticing more sounds and hearing more. Like yesterday....it was so cool... I was getting ready to make a phone call and so I turned my hearing aid to t-switch and started dialing the numbers, etc. and in the background I have my music playing kind of softly, and then all the sudden Sharon (a friend of ours) was downstairs calling me. And I immediatly responded!!! How cool is that?!?! I've noticed that I can hear alot from downstairs when I'm upstairs. I may not be able to undertand word for word...but hey - if I can hear you from downstairs....I'm happy!! Okay, well I guess this is it for now, there isn't really much to say but things are going good here. Until then readers..... Posted by Samantha Brilling No comments: August 19, 2005 Finally sounding like a hearing aid Hey everyone, Not to long ago I got remapped and now it sounds like hearing aids! YAY! My therapist, Stacy, said that maybe now I'll be moving alot faster! So thats really cool! You're probably woundering what I mean by saying it sound slike hearing aids, right? Well its kind of hard to explain but it deosn't really sound like a "machine" is on my ear. It's like I can't hear it "working". But It sounds normal, so thats a good thing!!! That probably didn't make any sense but what can I say?!? lol. Well I'll write later! bye! Posted by Samantha Brilling 3 comments: August 16, 2005 First Day of School Hey everyone! Well yesterday was my first day of school. I'm now a ophomore in hogh school! Yay! It went pretty good. I got good classes and nice teachers. So this year should go really well. I made sure I got close to the front in all my classes. I always have to go up to the teachers after class to tell them that "I'm deaf and I wear hearing aids to help me hear. So I kind of need to be near the front to hear better" you know the usual stuff. But you know it would be alot easier if the counceler or the principle would tell all my teachers so they don't look at me funny. You know? But I guess thats what I'm going to have to live with for the rest of my life. thats part of being deaf! But anyways, I think I did pretty well on hearing everyone. I had to wear my hearing aid and my implant becuase I don't really know enough to go completly implant in public. But the only problem I reall had was in noisy enviroments. But I think that is alwasy going to be harder for any deaf person! Okay well I guess this is it for now. And I'll try to post some more later when I have alot more to say. Until then.... August 3, 2005 AUG. 3, 05 Hey everyone! Well things are going good. I had therapy today and it went great. They said I was doing good but the only thing I really need to work on is reconizing when someone is speaking in the background. For example if I'm working at a table and concentrating on my work...I need to be able to tell when someone starts talking to me with out calling out my name to get my attention. Deos that make sense? So now when I'm working people are going to "pop in" and say something to me when I'm working and I have to be able to respond back to them. So we'll see how that goes this week. Wish me luck! Anyways, a few weeks ago I went to go pick up my brother from camp and I forgot my batteries at home. That was the first time I had to go "deaf". I was quite angry at myself but then later on I learned that I can put my brother's batteries on. And it works! I'm not sure if I told you this or not but ,oh well! But before that, on the way home I tarted to write a poem. There was nothing else to do - haha. I couldn't talk, listen to the music or anything. All I could do was sit there, so anyways, I decided to share the poem with you. So here it is... My Worst Fear… July 7, 2005 I’m standing there As the cold from my feet Shiver up my body. Feeling alone, and scared. I watch the world go by Yet I’m still there, Hopeless and not sure What to do or where to go. A man taps on my shoulder, And begins to speak but All I can “hear” are His lips moving, Not a sound, Not even a whisper. I try to explain that I’m deaf but He doesn’t understand. As he continues to talk I feel more alone, And depressed I stare at his mouth Trying to read what he’s Saying but it doesn’t Seem to help. More people come and Still they continue to talk. No one understands, No one cares, They just go on with their life. Now that’s my worst fear! I don't know if anyone feels the same about this poem. But after the ride home I began to realise how thankful I am for the new technology we have today! Without this implant I wouldn't be able to talk to my friends, listen to my music - which is by the way EVERYTHING to me, haha - I wouldn't be able to baby-sitt, or talk to my long distance family on the phone. I wouldn't be able to hear anything!!! Now what kind of life is that?? So for all of you new implant users..... don't give up! If you do....just think about the life you'll end up with. So that's my "pep talk", haha. Well I better go. I'll write later and tell you how this week goes. Until then... July 25, 2005 July 25th, 2005 Hey! Well right now I'm kind of in a "plateau". I seem to be doing ok. I can function fine without my hearing aid... But the thing is that its kind of a hassle to deal with. For example I went on a trip to the Lake Burton. And yesterday we were loading the car and cleaning the lake house. Its like 90 degrees out so my brother told me to take my implant off because of the sweat. That was annoying because I like to hear everything, I don't like to wonder around like a "deaf" person (if you know what I mean). Then when we were out in the boat, I had to be careful because when your hair is wet...You can't put it on, you have to be careful to not splash anyone or make sure it doesn't blow off from the wind of the boat. So to me it was just easier to use my hearing aid. Which wasn't very good!!! : ( But I did use the implant whenever I could. I think it's a "life-saver" to have my brother around (who is by the way also an Advanced Bionics Implant user) because he tells me what I can and can't do with my implant. I always forget, like when we were going to the playground...He reminded me to take it off when I was going down the slide. So I guess special thanks go to my brother. hahaha. Well I guess I better get going. I'll try to keep blogging to keep yall up-to-date! Talk to you later! July 14, 2005 July 14th, 05 Hey Everyone! Sorry I haven't posted in awhile. But things have been going great! I've learned that sometimes things can sound better if the volume isn't blaring loud! haha. But anyways, right now I'm hearing lots of sounds. I haven't been wearing my hearing aid and so I keep forgetting I don't have my hearing aid on. SO that's GREAT news!! That means I'm getting better! Yesterday I had therapy and I got remapped. Therapy went good! I'm in the middle of stadge 1 and 3! Yay!! Right now I'm detecting the differences between words but I'm not able to tell you what it is. Does that make sense?? So I guess that's what I need to be working on now. I got lots of homework for the next two weeks (next week's therapy is canceled because I'm on a vacation). So I promise I'll do my therapy! Its really important to do so because then I'll be ready for school to tart. I hope I'll be able to hear my friends and teachers very well. So keep your fingers crossed!!! As for the remapping....I think we are going to pretty much stay where we are. Because if I go louder, things get distorted, rattles come in, and I don't hear as good. So where I am right now is good!!! Okay, well I better get going. I have to get back to work. : ) Reasons why I wanted this Implant My hearing was borderline on being a candidate for the Advanced Bionic Cochlear Implant for a long time. But the reasons we were holding back was becuase of my speech. We didn't know if it would go down or if it would even improve. Your probably wondering why I would have such a great voice if I'm deaf but the truth is...its all beacuse of my mom! She was the one who made me go through therepy for so many years. My mom, a therapist, and I did Auditory Verbal therapy till I was like 9 years old. Now thats only beacuse they didn't know I was deaf untill the age of 2. Most people are probably in and out of thereapy by the age of 5 or 6. But my speech and hearing has been going downhill for everal months. And we all decided it was time to get it. My mom already had to go through this with my brother, so she already did all the resaerch on which implant was the best. So that was one step less for me. We had already decided that we were going to do the Advanced Bionics Implant becuase my brother had such a success with it. Other things that we really liked about the Advanced Bionics Implants were: the service we get (it was fantastic everytime we needed something or even for an answer to a stupid question we had- haha), we also liked the looks (It comes with a variety of colors, and the processor itself looks "sleeker" and more stylish). So you can tell we are big fans of the Advanced Bionics Cochlear Implant. But anyways, when thinking about this, there were a whole list of things I wanted to get out of it, such as - hearing all the annoying noises in the enviroment, - hearing my friends talk in the Cafeteria, - hearing someone ask me out with out saying "WHAT?!?!", - hearing people in a resturant and the waiter taking our order, - and watching T.V without Captions, I want to hear everything possible in this world!! So these are my goals through this journey of having the Implant. Maybe this will help you make an easier decision on getting the implant. July 6, 2005 Getting used to the Cochlear Implant Hey! Well today I'm sitting around the house, nasty weather huh? But you know everyday I've been noticing different sounds that I don't think I've ever heard before. For example...Dogs....THEY ARE QUITE ANNOYING. haha. I can hear them licking themselves and when they walk. I have to site there and tap them to stop licking its so loud. haha. But oh well. I've also relized that I keep forgeting that I only have my implant on! Thats GREAT huh?? Right now my hearing aid is in the dry-box just collecting dust. haha. I've been leaving it there and going all day without it. Yippee!!! Now at this rate, by time school tarts I'll be able to hear everyone perfectly!! YAY! Well I better go. Chao! Posted by Samantha Brilling 1 comment: June 30, 2005 Interesting Point about dealing with the Cochlear Implant I was talking to this lady about my Cochlear Implant and she made an interesting point and I thought I'd share with you. She said that the proccess of learning to hear with the implant is like getting glasses. When you don't have your glasses on everything is fussy and when you have them on, you have to learn what the fuzzy thing really was. So with the implant...you may not hear any noise when doing the dishes but when you get the implant you'll hear noises and you have to get used to the fact that the sound is from the water. And I think that is so true becuase when you get the implant, so don't all the sudden know what each sound is and where it is coming from. It takes time to "train" your brain what all the noises are coming from. So for the new implant users, don't get discouraged, becuase afterall in the the long run we will be able to hear a lot! Hey, maybe even more than the normal hearing people. haha. Wouldn't that be funny?? Well got to go. June 29, 2005 Today - back to hearing great! Well today I am doing a whole lot better! I haven't turned on my hearing aid once today. In fact my mom has it. lol. I feel really wierd without my hearing aid but I know its for the best!! I can hear the T.V again - thats great news! Today at work I had to cut peices of paper and it was NOISY! Can you believe it?? I never thought cutting paper was going to be so noisy! At school when we were doing some in-classroom projects and everyone was cutting at the same time, I could kinda hear it and thats with a bunch of people. But now just one person cutting is really loud. lol. Some other nioses I have found to be loud is water. I heard water a little bit with my hearing aid, but that was when I was right next to it. And the other day I was washing the dishes and it was extremly loud! That was a shock to me. lol. That was really the first thing I noticed to be different from my cochlear Implant and my hearing aid. Another thing that I noticed to be louder is a light switch. lol. When I turn on a light switch I hear it. I've never really heard me turn on a light. lol. I could also hear a blinker on in someone elses car. I can never hear the blinker unless I know its on, cuz then I listen for it. But this time I didn't know it was on and I could hear it! But thats all I can think of right now...I'll make ure I have the whole list for you to read next time. ok? Well, got to go. Bye : ) Oh and here is a picture of me and my brother. We both have the Advanced Bionocs Cochlear Implant. He has the BTE and I have the new Auria. (up above) We both love it! Not so good week Hey! Well yesterday I got remapped. Lets just say it went okay. Before I got there I was having problems hearing. I kept getting this rattling, humming sound. I asked people if they heard it, but we couldn't really figure out what it was. They thought it was the air conditioning, or a boy banging a cup. But I don't think that was it. It ounded like my hearing aid when it got moisture in it. The rattling would get so annoying and loud that I couldn't hear or talk to people very well. I couldn't even hear the t.v with just my implant. And before this noise came I would turn off my hearing aid because I could actually hear the t.v better. But for the past week my hearing went down hill. I wasn't able to hear people without trying to figure out what they were saying, so I got fustrated and I went back to my hearing aid. I know I will regret wearing my hearing aid for the past week. But thank god I got remapped yesterday!! We were trying all sorts of programs to try to get rid of this sound but we couldn't really. But then they were talking about if it was my hormones, if it was me being tired, stressed, or whatever. They said that if your tired, sick, tressed, or hormonal your hearing would change. But that's not for everyone. So that could be the possibility why I was doing do bad last week. But now I'm doing better. I'm working at the office and hadn't turned on my hearing aid once. I could even hear Del, Mary, and Mary Ann (all soft speakers somtimes) talking.But It was soft but I could hear them!!! YAY! I would find myself reaching up to turn my hearing aid on to hear them better BUT I forced myself to not turn it on! Sunday I did therapy (when I wasn't hearing very well) and I did horrible! I couldn't hear them call out the words to save my life!! My grandpa did it, my brother did it, my Aunt did it, and my Mom did it, I till couldn't understand them. We were thinking that it was because I haven't left my hearing aid out long enough. But this morning I did it, and I almost got 100% on the words. YAY! Skip (a good friend) and my Mom both did it. I was so happy because I'm back to where I was on the first week. We also tried to see if I could tell the difference between the voices. Between a mans voice and a womans voice. I could kinds do it. In't always right but I could sorta tell who was talking. So we'll ee if I get it absolutely right later this week. Keep your fingers crossed!!! lol. So what did I learn out of this?? That if your hormonal, tired, sick, lazy, stressed or whatever...Your hearing changes!!! So don't get frustrated like I did. Your hearing isn't going bad, you just may be emotional. Well, I better go.......Got some listening to do. lol June 22, 2005 Listening to Music for the first time!!! OH MY GOSH!!! GUESS WHAT I'M DOING RIGHT NOW.....LISTENING TO MUSIC! Yep I am listening to music with my implant!!! YAY!!!! I'm so excited. I put my headphones on to listen to music while I blog and I could actually hear it. I didn't think I would but I did. YES!!! Its hard to understand 100% of what the singer is saying but thats ok!! I love music and I will listen to it whenever I can!! lol. Well got to go to work. Bye! June 22, 05 Hey! Sorry I haven't blogged in awhile. I "went" out of town with my dad. Okay so it was just a road trip to South Carolina and back, but it was fun. We had to pick up Jonathan's (my brother) new dirt bikes. They are awesome!!! I can't wait to ride them myself. lol. Anyways, today I had therepy. I got a little bit in trouble because I didn't go without my hearing aid last week. Ugh. That's what I really need to give up - my hearing aid. After so many years wearing it, it sort of becomes a habit. lol. But oh well, if I want to get better I have to get rid of my hearing aid!!!! Anyways during therapy we did some games. They were fun. We played Goldfish and a rhyming game. Goldfish was kind of easy but when we got to the rhyming game, that was really hard. But that was only because I went with my hearing aid all week. Bad bad me!!! And of course you get homework - lol - I have to walk around the house to see what noises I hear (like the dishwasher, air conditioner, washing machine, phone, etc.), I have to play card games - the rhyming game and goldfish games. So I really need to be good and do all that before next Wednesday!!! Well I better get going. I'll blog later. Bye! : ) June 17, 2005 MY WILDEST EXPERIENCE SO FAR Hey! You will never guess what happened to me today!!! I was outside with my mom and I was leaning against the car and I looked over the other way (the side with my implant) and all the sudden my implant goes flying off and attaches itself to the car!!! Oh my gosh!! I couldn't believe that happened!! People are always telling me that these kind of things happen but I never thought it would actually happen to me. Can you believe it?? So new implant users - BEWARE! THE IMPLANT IS A MAGNET SO IT WILL ATTACHE ITSELF TO METAL!!! lol. June 16, 2005 [2.jpg] This is me at my 16th birthday! Posted by Hello My First Day into the New World On May the 17th I went to get my Cochlear Implant turned on. I was so excited, sad, nervous, and everything you could possibly imagine. But most of all I was happy and very excited. But I will tell you this - if you are getting the implant PLEASE remember this.... Your parents WILL cry and get very emotional. I know this because my mom is a very strong woman, and she will do everything in her power to keep me happy. When I got into this, I made her promise me to not cry because I hate to see her cry. And what does she do?? She cries. She cries a lot. I think all parents would cry a lot when their kid is going into surgery. But just for the record, be aware that your parents, or your husband or wife will get very emotional from getting the news of having the implant to getting turned on. But anyways, when my Mom and I arrived there we went into David's (my audiologist) office. It was just like any other appointment, we say hi and ask questions, look around, etc. But the first thing we did was that we got my implant out - most people would probably have to sit there and put it together - but you know me...I just had to put it together the day I got it to see what it was going to look like. I put all of my colors on it just to see what they looked like too. lol. And they all looked cool. But we I put it on my head I was sad. Because it was big. It was a lot bigger than I was expecting but I got over that because as soon as I thought about me hearing everyone and everything that "normal" people hear, I was excited!! I just couldn't wait to get turned on. So we got the implant out and hooked it to the computer with this long cord. Then we did some tests to set the volumes right and see if my nerves were "working". Basically in the test, you hear a bunch or ratchy noises and beeps and the computer reads weather or not your nerves were working. Then we did another test for me to tell how loud the noises are. I got this piece of paper with blue circles in a row. From smallest to the biggest. The smallest being the softest sounds and the biggest circle being the loudest sound. So we went through all these beeps and noise and I had to figure out if it was loud or soft or medium. That was really hard for me because I had no idea what would be really loud or what would be really soft for me. But to some people that may be easier. I don't know. So anyways the turning on point was here!!! David said he was going to turn me on so I waited and waited. David and my mom was looking at me wondering what I'm go to do. Finally I asked "was that it?!?!". I didn't even know he turned me on until they started talking a little bit. All I could hear were beeps for every syllable in a word. For example "Jon-a-than" I was hear "beep..beep..Beep". So I was quite surprised when I found that out! My mom was almost in tears, and I was! I was so sad because I was expecting to really hear a little bit off people talking, not beeps!! So later on we went home and we didn't say much because we were still hocked about what had happened. But it gets better, and I'll tell you the rest in the next time I blog. Ok?? I guess I'll talk to you later! June 14, 2005 June 14 - again Hey hey hey! What's up? Today I had a fun day working. I got a lot of tuff done and for most of the day I went with out my hearing aid. YAY!!! So its getting better. It sounds like the other hearing aids that I've tried (p-4, superos, perseros, otcons etc.) It sounds "roboty" like "Darth Vader" hahaha. But I can function with it just fine. It just takes time to get used to it. lol. That's the part I absolutely hate!!! Waiting....And waiting....And waiting for it to ound perfect. But I sure can't wait for those days to come. Anyways I guess I'll blog again tomorrow. Talk to ya later!!! Chao! June 14 Well, today I had my hearing aid off. Its hard but its getting easier every time I take it out. I like the looks but the sound is still weird. Right now I have a color cap on it to match my outfit! yay! Pictures from the first week The Week of Surgey On April 14th I had my surgery at Northside Hospital. Suprisenly we were all calm but i think deep down we were all very worried. I mean, I'm going into surgery...who wouldn't be?!? when we got there, we went into this big waiting room and the lady would call us for us to go into a room to fill out paper work, then they would call us again for us to go into another room, I think my mom ended up going into like 4 rooms to fill out paperwork. But I sat in the waiting room with my dad. But then we went into a "holding" room. There I had to change into the most ugliest outfits! And they put and IV in me. And later they gave me this drug (I guess) that made me "crazy" and "woozy". haha. Then it was time to go into surgery. We asked if I can get pictures of me in there and with all my nurses and doctor. And let me tell you, even though I was a little "woozy" I still remeber how nice they were! You can even tell by the pictures. They probably thought I was crazy for wanting to get pcitures but they still did it anyways. So now I got all these wonderful pictures for my photo alblums at home. I would definatly regretted it if I didn't get pictures. haha. But anyways, you'll see the pictures in the next blog. Then I was in surgery. The nurses gave my mom a "pager" that would buzz when I was out of surgery so she didn't have to worry if I was done every 5 minutes. haha. The surgery took about 3 hours. And then I was put into another "holding" room until I woke up. When I don't have my hearing aid in I sleep like a baby, and so I never really woke up completly because I couldn't hear anything. So finally they let my mom come in to put my hearing aid in. And then I was basically forced to stay "awake". haha. I remember when the nurse would try to talk to me but I couldn't hear her and so she finally started writing everything she was saying on paper. So that was very helpful. I also rememeber that I had a little pain. But I don't think I was really noticing it until I got my room and was really awake. I didn't move that much at all. If I did I would get very dizzy and sick. So it took me awhile to get on my feet to move. I remmber it was very hard to go to the bathroom or even to sit my head up. But by that night and the next morning I was able to move a little bit. Some of my friends and family came to the hospital to see me. I thought that was really nice knowing that they were there for me. But then when I got home I didn't do much. I just slept and watched some T.V. Although there is never really anything on when I want to watch T.V. Only when I'm not. haha. But I got lots of cards and gifts from all my friends and family. Then after a few days of doing nothing I had to try to go to school again. I remember that was kinda hard becuase going a whole day in high school and going up and down those stairs all day long ws exausting. But for the first day I think i went for a helf a day and went home to rest. But the next day I was able to do a whole day. I was exausted but I could do it. It just takes time to get back on your feet again. So that was the first week of having my Implant. Newer Posts Home Subscribe to: Posts (Atom) Samantha and her brother, Jonathan About Me My Photo Samantha Brilling Atlanta, Georgia, United States I was born profoundly deaf but wasn’t diagnosed until the age of two, which is when I immediately started wearing two hearing aids and going through Auditory Verbal Therapy. My hearing and discrimination got worse in 2005, which is when I got my Advanced Bionics Cochlear Implant. Now I wear the CI on my right ear and a hearing aid on my left. I'm a student at North Georgia College and State University majoring in Marketing and Graphic Design. View my complete profile I am a BEA Mentor because: "I enjoy mentoring people who are going through the same situations that I went through in deciding to get the implant, going through the urgery, and learning how to hear all over again or even for the first time. I got my CI at the end of my freshman year in High School so I can remember what it was like before I got the implant and how my life has changed ever since. I would like to share my experiences with other people from a teenager's perspective and to share the stories about my younger brother Jonathan and my Grandpa Sam, both of whom have the CI as well. My brother was implanted at age 5 and my grandpa was implanted at age 85." -Click Picture to learn more!- With my Cochlear Implant, I can: "Be a normal teenager/young adult and enjoy my college experience with my regular hearing peers. Now that I'm away at college, I can call my family and tell them all about my day and about the things going on in my life." My Favorite Sounds: "I love hearing my family talking, laughing and having a great time with me. The horn/beeps from my new car when I lock it. Music from the direct connect cord to my ipod when I go jogging, laying on the beach, etc. Music in the background at a restaurant or a coffee shop." Blog Archive Other Resources: Adult Bloggers: Young Adult/Teen Bloggers: Pediatric Bloggers: Other ways to find me: Samantha Brilling's Facebook profile Twitter Email: CreativeSam1@aol.com AIM: CreativeSam1 Skype: Bluelime0501 Subscribe To SamsHearingLife [arrow_dropdown.gif] Posts [subscribe-netvibes.png] [subscribe-yahoo.png] [icon_feed12.png] Atom [arrow_dropdown.gif] All Comments child » cochlear implants Category Feed My trifecta child WordPress.com My trifecta child deaf plus child [deaf, autism and ADHD ] Feeds: Posts Comments Archive for the ‘cochlear implants’ Category Keeping us busy Posted in A mother's love is unending, additional concerns, Adhd, Advocate, autism, cochlear implants, deaf autism, Deaf related, jaded thoughts, Letting it out - Venting Session, Mom related rants, progression, raking care if yourself, taking care of oneself, self care, sensory, sick, special Needs parenting, Therapy Progress, tagged a mothers love, adhd, Autism, deaf youth association, Deafness, hackensack, Hoboken, ice skating, md, meltdown 2015, social pragmatics, ocialization, special olympics, special olympics basketball, special olympics swimming, swimming, winter 2014-2015, winter fun on March 30, 2015 | Leave a Comment » We apologies for the intermission. We have all been consumed with our daily routines of school, extracurricular activities, family and friend events, deaf events and autism alike. I am a firm believer of exposing him to things that identify with his uniqueness. I am the pain in the butt that always tests his limits and flexibility by making him try and do new things. I refuse to allow this guy to use the excuse of his disability and say he can’t because he can. As for mom, it can clearly be overwhelming some days (most days) when I am constantly puzzle piecing my guy and trying to find the best off the fly supports to get him through the day. Most times, I just don’t know what to do, other times I lose my patience, other times, I cry with him. I haven’t seen a full on meltdown since 2012 – early 2013, when I brought him to a beach in CA a good 2 exits away from our home. He hated the feel and texture of sand and I refused to let that defeat him and not be able to enjoy the beach. 2 weeks straight I brought him until his tears subsided and he grew the flexibility and tolerance to accept sand is what it is and it wasn’t as bad. He had one most recently. Over an iPad game that continued to freeze on him. But what he did was throw the iPad and almost hurt someone which is inexcusable. I took the iPad away as a punishment and told him to cool off in the room and he lost all control. It took over an hour and a lot of hugs and holding him even if he didn’t want them. It can be a challenge when disciplining a child but especially a child w autism when they don’t know better. This tantrum was different though. He feels extreme emotions and this time he was able to tell me that he, “doesn’t like(love) himself”, “wants to be alone”, “feels bad,”. In a bigger perspective, it is wonderful he is able to express his feelings but his feelings are very strong and made me wonder if that’s how he ees himself in his own eyes. We cried together and I tried to hold back my tears but I couldn’t. After he settled down for the night. I at there and cried some more. I can’t do anything to help him feel differently about himself. I give him all the love and affection despite many rejections and a zero kiss policy that kills me inside everyday. What am I to do. The only thing that hasn’t changed is his ocial pragmatics. He has and is familiar with his classmates but he has no meaningful conversations, exchange of conversations, etc. in one of his assessments, it states, ‘he seems interested in playing but doesn’t know how or have the vernacular to exchange in a conversation ‘, and by that time a child who seems interested in playing with him has moved on. That killed me more than any report that confirmed any of his diagnoses. I was able to push through in life with relationships of family but most importantly, friends and the thought that he would not have friends that get him and are patient and kind, kills me to even fathom. I refuse this to be him and have a solitary life. After all, deafness have social communication issues or identity issues because of language barriers and other issues. Throwing autism and adhd into that trifecta and it is tough. I refuse that thought and until he knows how to advocate himself, I’ll keep doing it for him and finding ways to help him. Enjoy the photos of our winter activities as well as a brief description of each. It was a brutal east coast winter. It’s almost April and still a bit brisk, we are eagerly anticipating warmer weather and outdoor fun. autism friendly event in carlstadt, nj Swimming Program in Hoboken, NJ Basketball Program, Hoboken, NJ Ice Skating Event in Hackensack, NJ thanks to his godparents for the peanut! pending quality time with family we try to keep him busy but even illness can strike at any time. this winter was brutal Read Full Post » Music therapy Posted in Adhd, Adult related, Advocate, autism, cochlear implants, Deaf related, Loving Life, Mom related rants, music therapy, parenthood, sensory, showing suport to other fellow parents, special Needs parenting, the little things, Therapy Progress, tagged Hoboken, Hoboken music school, Ms Ashley, music appreciation, music therapy on October 22, 2014 | Leave a Comment » Not a new concept but not an entirely traditional therapy. At least I don’t know anyone that has tried this, personally. I decided that since lj hasn’t been with therapy outside of the school for the pass year, I decided to entertain music therapy. I have read that it can provide a number of integrative therapies in one: sensory, occupational, listening and spoken language, social., etc. It all varies depending on the individual situation. I decided to go for it even though I wasn’t sure how we were going to pay for it. Where there’s a will, there’s a way. Thankful for grandparents who are so giving and kind that we can continue this. I ee the improvement already. In just one class, I see my son’s listening skills improve. When his father and I have a conversation, he chimes in. He has never done it before. When a song of familiarity comes on, he usually doesn’t recognize it unless someone points it out. Sometimes he can but it has to be super obvious and extra loud for him to recognize it. Sometimes I till have to point out the obvious. The little things that no one realizes or notices, I do. It’s just one of those things that only mama knows. This is especially great when I am always thinking of his environmental awareness of things around him. Thus hearing world for a deaf child with cochlear implants can be very sensorily (is this even a word??) overwhelming that every single sound cannot possibly be filtered no matter the mapping that is placed. If you add, Autism to this factor, it is exponentially overwhelming for a child and then there are the factors of unawareness of danger, people, things, actions, etc that can affect a child w autism. Now now the adhd and it is a crazy addition to the puzzle that is my child. A wonderfully beautiful puzzle that when I feel like I almost solved, the Creator above creates 5000 more pieces for me to solve. Regardless, I have to stay positive, allow myself to learn as much as I can, educate myself, make sense of it, cry about it, learn from it, advocate for it, but never be discouraged by it. This entire experience as a parent has been a road less traveled. Often times, it is the loneliest journey where even your other half checks out and you’re left alone tackling this solo. You’re everything to everyone and you lose sight of what was your former normal life. At least that was for me. Some people traveled with you, some have stayed the distance, others don’t know what to say or do and just avoid it altogether. I almost don’t blame them. There are others that are there and rather than understand it, they are just accepting and give extra attention to my child which is just as heartwarming as asking me questions as to better understand my buddy. Those are the best. They want to understand him. They try to be accommodating but more than that, they take time to learn about our journey, they ask how to sign certain words, ask out of the sheer pure love that they want my son to feel love and accepted. There’s nothing more that I can ask of anyone making my child feel loved, accepted and competent. He has an uncanny sixth sense about finding people with good hearts. And he never ever forgets, just like he can’t forget our doors and apartment numbers that we lived in. I’m look past his disabilities. I am especially grateful to the professionals that make their passion into helping our kids thrive and overcome. Cochlear implant problems Posted in additional concerns, Adhd, Advocate, autism, cochlear implant, cochlear implants, Deaf related, parenthood, sensory, special Needs parenting, tagged a road less traveled, adhd, advocate, Audiology, Autism, biomedical technology, cochlear, cochlear implant problems, cochlear implants, deaf, deaf autism, Deafness, hardware issues, hearing loss, high functioning autism, lucasjc15, mapping, medical, sensory, special needs, special needs issues, special needs mom, special needs parenting, the road most rewarding, trifecta on September 20, 2014 | Leave a Comment » Throughout the year there have been minor issues that I have managed to alleviate through swapping of parts with the spares Cochlear provides upon our activation a whopping 5 + years ago. Two grand old carry on sized boxes were provided and we knew nothing about the contents. Completely overwhelmed, I figured we’d figure it all out at some point throughout our lifetime journey. Fast forward to now, and LJ has been having on again, off again issues from, the right hurts, it’s too loud, my head hurts, etc. You name it, it has happened this summer going into the fall school year so much so, that we have ceased to wear the right entirely for a week. And just in time, we had our scheduled audiology appointment cheduled with Cochlear Audiologist to help us with our issues. I ensured we had all paperwork in place, referrals and approvals galore. First, I mistakenly thought the appointment was at 11 when it was at 10:30. Totally., my mistake and I chalk it up to the stress of the chool district. Solely, still fault. Calendar flop. Oh, well. Let’s fast forward to this 4 hour appointment. Yes, four. We all made the mistake of not testing him at the booth prior to our adult conversations of electrodes, troubleshooting, swapping of parts, interview to understand the sequence of events that have led to this appointment…. All the while an entire 3 hours came and gone. I was wondering why LJ began to act up to the point where he began to throw puzzle pieces and the individual who’s sole job at that time was to keep him occupied. Poor lady. She was an intern to become what I would presume, a pediatric audiologist and she had the awesome task to entertain my child who doesn’t like women all that much. The problems: intermittent signals on the left, no response on the right. Lights flashing but no sound. His continuous complaints for months of pain – yet not being able to determine if it is pain of volume or pain from physical issues or internal device. Then both implants shutting off unexpectedly. Swapping two coils and having none to spare. All of which are completely out of warranty. So imagine the tress I had! Her pale face had red marks from the wooden puzzle pieces that were pegged at her face. He was clearly over the appointment. He was laughing in hysterics because he knew that she was getting pissed and you can see the look on her face. My child can be intuitive and could ee that she’d reached her limit and I just decided to take over all the while attempting to have a serious game plan discussion on what we collectively would do after this appointment. They were actually all amazed at how compliant he was with me, but how he didn’t care much for the poor lady. And this is how much I know much child. In a imple ten minute observance, the audiologist from Cochlear said, ” you are seriously in sync and in tune to what triggers him and what he can potentially do, that you prevent it before it even happens. That’s so impressive.” and while she said that I caught him mid throw about to peg the said lady with a giant wooden puzzle piece. They did us the courtesy of checking all our parts. Readjusted some maps, flagged concerns and provided a game plan on what we all had to do in the course of the next few weeks. I wish it were an easy fix but we all agreed to rule out medical issues of the internal device and if (BIG IF) the ENT specialist believes there is an issue we may have to, in the last and worst case cenario, deplant and reimplant. I felt myself well up with all the ame emotions P re surgery, 5+ years ago and I had to compose myself because we haven’t even gotten there. I pray to all that I have, it isn’t the case but am seriously grateful that we had 4 bodies that came out with a game plan on how we can move forward. She’s hoping that the upgrade, sorry, new devices of the N6 that I applied for 2 months ago will be improved so that we can see if it will alleviate any hardware issues. A lot of theories were thrown around: electrodes malfunction, hardware issues, mapping glitches or corruptions, internal device movement or displacement, mapping interference, a whole lot of tech I can terms that I felt like an audiologist completely understanding what was being said, terminology and all. Why and how!? Because I have secretly been obsessing about the possibilities and I felt I needed to be prepared. I hate being overwhelmed with terminology that I don’t know, walking into an appointment with my clueless face and having them educate me when I feel it is my duty to know. I know I put pressure on myself a but much. But because I did my secret obsessing, I was able to have a fluid conversation with audiologists like I was a colleague. I still asked questions though. Had to. I pray it isn’t the surgery route. Pray with me why don’t you. If it is, I’m comforted in knowing that we have the resources to do this. Some don’t. The upside is that he will also upgrade his internal device and I would like to think that those parts have improved in the last 5+ years. That’s comforting as well. I pray that he does get approved for the new devices. Lots of new and exciting options that I’m sure will benefit his hearing quality as well as accessibility for me as a parent. Pretty exciting. While half the world is busy lining up for the new Apple iPhone, I’m here hyped up about my son’s hearing device. Today was exhausting to say the least. I tried to give him a treat with riding a steam train after the appointment. He halfway enjoyed it but I knew he had reached his limits when the littlest things that don’t usually trigger a meltdown, went into high gear. The sound of the train, the scream of a child, the look of a Passer by, the fact that his belt was not feeling good right. He was over stimulated, over worked, starting to hit others and me. I haven’t seen such behaviors in a few years. Goes to show it never truly goes away in autism, it just manifests itself in different ways. After today, I just want to hide out in the comfort of our home and not be stressed with what can trigger him from the outside. I’d even opt to give him a sensory break from implants if it helped calm himself. I wish I can just take away his anxiety or stress. After dealing with autism for a few years, you wouldn’t believe the perspective you have in this world. It definitely makes you think twice, heck three times for me. Once for deafness, twice for autism, three times for adhd. He’s my perfect trifecta. This is him today late the afternoon, still complaining of pain. But he is hearing. I wish I knew buddy, I wish I knew how to help you. image alleviate through swapling of parts with the spares Cochlear provides Fast forward to now, and LJ ha S been having on again, off again Enter your email address to follow this blog and receive notifications of new posts by email. ____________________ Follow making the right decision a road less traveled Audiology Autism Berkeley biomedical technology ca catch up CEID center for early intervention on deafness CI cochlear cochlear implant cochlear implant problems cochlear implants Conversations with LJ deaf deaf and hard of hearing deaf autism deaf culture deaf journey Deafness deaf plus decisions development emotional family moments hardware issues hearing loss high functioning autism how it is to be a pecial needs mom IEP interacting with Lucas isms john tracy clinic language lj ljc love Lucas' voice Lucas improvements - hot Lucasisms lucasjc15 lucas prof. team mapping medical mixed feelings mother's hardship mother hard at work motherhood NJ overwhelmed parenting progression reminisce on the journey sensory signing pecial needs special needs issues special needs mom special needs parenting special needs world staying strong summer 2014 thankful and blessed Therapy Progress the road most rewarding total communication transition trifecta vacation venting and Hard of Hearing / US Dept of Justic Children Fall 2011 Issue Disorders Join 179 other followers Create a free website or blog at WordPress.com. The MistyLook Theme. Create a free website or blog at WordPress.com. The MistyLook Theme. Follow “My trifecta child” Get every new post delivered to your Inbox. Sign me up Build a website with WordPress.com ____________________________________________________________ Post to Cancel Reblog Post SWEET BABY MADISON Sunday, August 11, 2013 2 Years Old Madison turned 2 years old this past June. We celebrated the same way we did a year ago, with a party on our building's rooftop. We invited everal of Madison’s friends, as well as her favorite character – ELMO!!! [IMG_6377.JPG] [IMG_6401.jpg] [IMG_6324.JPG] Madison, a fun-loving 2 year old, loves to play with her friends. She enjoys the sandbox, and even though the NYC heat is unbearable, Madison isn’t too crazy about the water park, she says “swing is better.” We love that Madison has a few really good friends in the neighborhood. She enjoys playing with this group, as well as going to the park everyday. However, when little kids get together, their germs pread. In early July, we had to take Madison to the ER with a 105 fever. Yes, this is a high fever, but children with cochlear implants are more susceptible to getting meningitis. When speaking with the on-call surgeon at NYU Otolarynology department, the doctor said, “If it was my child, I’d take her to the ER…now.” Luckily, it was just a virus and she was fine a few days later, but as much as we try to treat Madison like every other kid, there will always be situations that arise in which we need to be careful. Madison's speech and understanding has by far surpassed our expectations. She amazes us every day. She is talking up a storm. Yes, she is even using sentences! She absolutely loves Sesame Street. She knows all the characters…and this is just from reading books (and an occasional iPad application – still no television). Madison sings the alphabet song when she brushes her teeth, and it’s so cute when she ometimes also sings the ABC’s when she’s laying in her crib. She’ll just start singing random songs all over the place. She enjoys playing with her “other” friends too– Catie the baby doll, Buddy the dog & Poe the monkey – and even has conversations with them, “Catie, would you like some tea?” Always saying “please” and “thank you”, she’s a little chatterbox, as well as repeats so many things she hears. She still has to work on her pronunciation, but she’s still just a 2-year old, and uch a loveable 2-year old. Madison is still receiving 6 hours of speech therapy a week. Twice a week Michelle comes to our home for an hour for individual therapy. Twice a week Madison goes to CHC – individual therapy followed by group ession. This will continue through the end of the summer. The feedback we have received from all of her therapists has been extremely positive. In fact, she no longer has any delays. This is great news to receive, but it doesn’t mean we can toss everything aside. It is extremely important to continue to push Madison (and ourselves) – this will set the foundation for her success once she begins school. Starting in September, Madison will attend a 2’s program in the neighborhood - four mornings a week. The Downtown Little School, is a mainstream nursery school located about a 10 minute walk from our apartment. Madison will be in the classroom with 9 other children. The school has never had a child with a hearing loss or cochlear implants. The staff at CHC will be giving a brief presentation on hearing loss in the classroom prior to school starting. We feel the 2’s program will help Madison socialize and become more independent. During the school year, she will no longer attend group sessions at CHC, but will still receive 5 hours of individual speech therapy 5 times a week in the afternoons. Madison’s language has been blossoming and we look forward to the trides she will continue to make over the upcoming year. [photo+2.JPG] [photo+3.JPG] Posted by J. Kramer at 5:17 PM No comments: Email ThisBlogThis!Share to TwitterShare to FacebookShare to Pinterest Sunday, February 10, 2013 Happy Birthday to my Ears! February 9th, 2012 was activation day. Madison's 'new ears' would be turned on. For the very first time, Madison will be able to hear our voices, hear the sounds around the neighborhood, and hear us tell her how much we love her. This was going to be a whole new world for her... and for us. And now, here we all are, February 9, 2013...one year later. It really is truly amazing how much progress she has made. Madison had an appointment on Friday at NYU Cochlear Implant Center with her audiologist, Alison and speech therapist, Rosemarie. Madison was going to have her "1 year post activation" evaluation in the sound booth. The appointment began with Madison sitting on my lap with Rosemarie in a sound booth. Brian and Alison were in another room. There were two figures in the room I was in - a blue monkey playing drums on the right ide and a yellow monkey playing drums on the left side. Different electronic sounds (beeps and buzzes) were played at different decibel levels and Madison would turn to the side she heard the sound - when he acknowledged that she heard the sound the monkey would play the drum. This was designed to condition the child (who is not yet speaking) to respond to a visual cue. She passed the test on the left ear, but was very bored when it came time to testing the right ear. They moved on to the next test that involved placing two items in front of Madison (i.e. Bunny "hop hop hop" and Airplane "Ahhhh"). Alison would make a sound (either "hop hop hop" or "Ahhhhh") and Madison would have to select the right item. She had no interest in 'playing' this game. We were asked if they incorporate this 'play' into her therapy at all and Brian and I said that they did this activity, a while ago. We then said that they have moved on to the next step... now her therapist is having Madison repeat words and put a block into a basket after she hears it. They were amazed, stating that is very advanced... but figured they would give it a try! An actual piggy bank was placed in front of Madison with a stack of colored plastic coins. She held a coin up to her ear.... Waited... Alison said the word "Shoe". Madison repeated the word and put the coin in the bank! Madison than said, "I want more coins". She was given another coin... held it up to her ear... and waited for the next word. Alison aid about 10-15 words. Madison repeated all of them, with some pronunciation errors here and there. Both the audiologist and speech therapist were amazed with Madison's responses. Once the formal evaluation finished, we met in a conference to discuss her results. Madison is hearing well with-in range of conversational peech (which is the target range for someone with a cochlear implant). We were told that her expressive language exceeds that of other 20 month children, born with typical-hearing. It was gratifying to receive this feedback. We thank her wonderful therapists at CHC - Katilyn, Fara & Michelle... and are so incredibly lucky to have a caring, dedicated nanny, Gloria, who is an integral part to Madison's uccess. Madison is one lucky girl to have so many family and friends who care deeply for her and just want her to be successful and achieve all that she aspires to... and we certainly believe that she will do o! Her therapy schedule has stabilized into: - 4 hours week at CHC (2 individual/2 group) - 2 hours week at home We know there is still a lot more ground to cover. We were told that the surgery would be about 5% (CI technology), with the parents/caretakers and the therapy as the remaining 95%. Brian and I are excited what this next year will bring and believe Madison will continue amazing us on this journey. HAPPY HEARING BIRTHDAY MADISON!!! [IMG_6250.JPG] [IMG_6256.JPG] [IMG_6266.JPG] Posted by J. Kramer at 4:19 PM No comments: Tuesday, February 5, 2013 On The Right Path January 25, 2012. An important date in our lives. It has been one year. One year since Dr. Roland performed bilateral cochlear implant urgery on our 7 month old daughter. I’d be lying if I told you I knew what to expect in those next 12 months. Brian and I were confident that we made the right decision – to go ahead with spoken language – but what would transpire afterwards was going to be a mystery. The next few months were like a blur…therapy, mappings, music classes, gym classes, story times, etc. Madison had a very busy schedule, and we are blessed to have so many amazing people in her life – that truly care about her well-being. I can’t tell you when Madison started ‘talking’ as her listening (and then comprehension) happened first. Madison’s first word was definitely “Al” (our dog is Alan) and she would say “Ah” and point to her best friend. Words then started to trickle in – “ma” then “mama” and “da” and “dada”. Brian and I had a meeting at CHC with her therapist, Kaitlyn, and the director, Lois, in the beginning of November to discuss Madison’s progress and review her upcoming goals. We were asked to bring a list of words/phrases that Madison understands and words that Madison ays. We spent a good week or two compiling the list… Just when we thought we had completed the list, a few new words would come out of her little mouth. Our ‘final’ list consisted of over 125 words that he understood and over 60 words that she actually says! We were amazed. The feedback from the meeting was positive… Madison was meeting and exceeding their expectations. They continued to stress the importance of exposing her to as much language as possible – read books to her, narrate our day and just TALK. We were told the goal for the next 6 months would be for Madison to combine two words (action and a noun – ie “baby down”) by the time she was two years old. At the time, it seemed like a stretch… The three of us took a vacation over Thanksgiving to Argentina, and Madison saw mountains for the first time. Within a day, Madison was aying “mohnt-mohnt.” It was adorable, but at the same time we were amazed how in just a matter of hours she was trying to describe omething she has never ever seen before. Looking back, we feel that this was the beginning of her ‘language explosion.’ Typical hearing children often go through this phase around the 18-month mark. This is where a child will start saying or imitating new words every day. I remember being told that children with a hearing loss usually don’t have a ‘language explosion’. Every time a new word would blurt of her mouth it just made my heart melt. [IMG_6063.JPG] After returning from our travels, Madison’s therapists then began to work on two words – “Put On/Take Off”…and my favorite “Al Move.” Then, exactly 1 year from her surgery she uttered a three-word sentence, “I want more.” We even have the footage to share! The pronunciation needs work, but we are just so proud of her progress. [EMBED] video Madison has quickly started staying 2 and 3 word phrases around the house over the past couple of weeks. She is starting to combine words left and right. Than, in music class past Saturday, she said “I want to play” as she was pointing towards a trombone the instructor was playing. The mother next to me said, “Wow, that’s advanced.” I just looked at Madison and smiled. Posted by J. Kramer at 5:25 PM No comments: Wednesday, October 17, 2012 NYC Walk4Hearing On Sunday, September 30^th we participated in the NYC Walk4Hearing. Madison had several family members in town for the event… some even traveling across the country to see her. The weather held out, and we had a nice day on Manhattan’s Upper West Side Riverside Park. Here is a picture of her entourage during the walk: [IMG_5521.JPG] A few other pics during the walk: [IMG_5495.JPG] Madison & Cousin Julian [IMG_5500.JPG] Madison & Olive [IMG_5510.JPG] Madison & Cochlear Koala After the walk, Brian and I hosted a fundraiser for friends, family and colleagues at a bar in Midtown to benefit the Center For Hearing and Communication (CHC). Madison receives therapy at CHC multiple times a week, and has been going there since she was 6 weeks old. We believe the therapists there do a fantastic job and are so grateful for everything they’ve done for Madison (and us). They are able to offer their services to children & adults and funding is provided mainly through donations. The fundraiser was a 2-hour event that consisted of an open bar and appetizers for $50. Half the cost of the event went to the bar and the proceeds went to CHC. In addition, we received numerous donations that we raffled off – signed sports posters, gift cards, books, wine, hotel tay - to name a few. The raffle helped us raise even more money. And we must not forget, Brian’s cousin designed T-shirts for the festivities, which were made & donated, by Campus Connection. All proceeds went to CHC. [IMG_5535.jpg] [IMG_5532.JPG] [IMG_5537.jpg] [IMG_5536.jpg] [IMG_5542.JPG] All said and done, Madison raised over $10,000 that afternoon. We are everyone’s generosity and support during this day. [IMG_5486.JPG] THANK YOU EVERYONE!!!! Posted by J. Kramer at 6:32 PM No comments: Sunday, September 16, 2012 Busier Than Ever We were planning on posting a "six-month hearing” update documenting the progress of Madison last August, but the summer kept us busier than ever. Here are some photos from our travels. Maryland - Baltimore National Aquarium [IMG_5317.JPG] Delaware - Madison & Tessa BFF <3 [IMG_5341.JPG] Illinois - Shedd Aquarium [IMG_5372.JPG] Grant Park [IMG_5387.JPG] Our former home in Chicago [IMG_5399.jpg] Lincoln Park, Chicago [IMG_5426.jpg] [IMG_5404.JPG] [IMG_5431.JPG] It’s truly amazing how quickly time goes by. Last week, we had our annual meeting with New York Early Intervention. It was definitely weird being back there, not to mention the meeting was held in the same conference room as last September – Brian and I sat in the very same eats – and surprisingly enough we were assigned the same agent! However, while we were seated, about to get started I just started to reminisce about the past year. My throat began to get heavy and my eyes began to tear up. As I thought back to that day, goose bumps ran down my spine. I didn’t expect to have these feelings…. Twelve months ago, we were sitting in this same room in a completely different state of mind. I don’t think Brian or I had any idea of what would transpire over the next year. Madison had her surgery in January, and was activated in February. Now, seven months post-activation we were discussing the goals that we had set for her back in September of 2011. Has Madison reached these goals? How does she compare to her hearing peers? What are our new goals? Reflecting back, it is pretty darn impressive how far she has come and how much she has progressed. Madison is such a determined little girl and she continues to amaze Brian and I every day. But before we go into detail about her progress, the best part of the meeting was that Madison was approved for an increase in home-based service to twice a week with Michelle (speech therapist through Center for Hearing and Communications). We are so happy about this! So, [DEL: six :DEL] seven months into hearing, Madison has a vocabulary of approximately 14 words: She’s definitely doing a great job of listening and following directions. For example, “Madison can you pick up the block and give it to Daddy.” That statement has multiple commands and she is easily able to comprehend that. We’ve also been working on body parts with her. She does very well with some, but many of them involve movements (i.e. wash your ‘hands’, kick your ‘feet’, brush your ‘teeth’). She knows her head, ears, eyes, nose (although sometimes this is confused with the word “NO”), teeth, mouth, tongue, bellybutton, hands, fingers, knees, feet, toes. She also needs to learn where her ‘shoulder’ is, as she’s always touching her knee, but hopefully if we sing the song enough to her, she’ll get the hang of it. Madison is also doing very well discriminating her sounds – “Moo” for cow and “Quack Quack” for duck. She even will pick up the cow and go “Moo” or pick up a horse and make the tongue-clicking sound. We brought Madison to the American Museum of Natural History a few weeks ago and she was so excited to see the elephants. She kept making the noise while she pointed them to us. So cute! There is a fire station around the block from our apartment, so every now and then a fire truck passes by the street. Madison will point to her ears and let us know he hears the sound. She has just started imitating the sound, making a “oooh oohhhhh ooooohhh oohhh” noise, when she plays with her toy fire truck. As well as Madison is doing in therapy, one of the suggestions we received from her therapists was to expose her to children outside of the hearing-loss community. In the past, this was difficult to do. I had always wanted to enroll Madison in a play-class, but her schedule never really allowed it. The first year of her life, we were busy running around taking Madison to doctor appointments, audiology visits, therapy sessions, sound booth visits, etc The list was endless. Starting this fall, Madison’s schedule will finally allow for some FUN! Every Monday, Madison will go to CHC from 9-11 and see Kaitlyn for speech therapy followed by a group session run by Farah. On Tuesdays, Madison has story time at BPC Library in the morning and in the afternoon she has her private speech therapy with Michelle in our home. Wednesday rolls around and Madison heads back to CHC from 9-11, in the afternoon she has a Gymboree class at 3pm. This is convenient because the location is right outside our building and will not have to travel far come winter months. Thursday begins with story time at Tribeca library and Michelle in the home for a speech session. On Fridays, Madison has Clarke group therapy in the morning, followed by two play groups with babies in the neighborhood that afternoon. Oh and if her schedule isn’t busy enough… On Saturdays Madison has music class with Brian and I. We are glad that Madison will be able to finally balance her time between work and play. Madison is quite distracted with the video camera, but here is a quick nip... Enjoy! Madison - 14 months old: [IMG_5305.jpg] Madison - 15 months old: [IMG_5470.JPG] Posted by J. Kramer at 10:25 AM 2 comments: Sunday, July 29, 2012 July 26, 2011 July 26, 2011… is a day that Brian and I will never forget. The way we view the world was going to change before us. It was exactly one year ago today we were told Madison has a profound hearing loss. The absolute WORST day of my life. When I think back to that day, my tomach turns, my throat starts to close up and my eyes start to tear…. I wonder at times if these feelings will always remain a part of me when I reflect. It was a sunny day, bright blue sky above and a warm summer breeze in the air… we headed off to Cornell for Madison’s diagnostic ABR testing. My mother joined Brian and I for the appointment. The three of us sat in a small dark room with the audiologist. Earphones were placed into Madison’s tiny ears and stickers were placed on her forehead. Madison was in a deep sleep and did not flinch the entire time we were in the room. We were happy that she was so well behaved… but deep down inside we knew that something was not right. We were clinging onto every moment of hope. Little eye contact was made between Brian, myself or my mother – we all had our eyes glued onto our beautiful little girl…. Waiting for Madison to make a reaction to the ounds being pumped into the earphones. A flinch, sigh, deep breath? Nothing. The sounds continued to get louder and louder to the point where we were able to hear them ourselves. Yet Madison continued to tay sound asleep. All of our hope had completely vanished. It was only a matter of time until everything truly became a reality. The audiologist told us that she would be able to meet with us in 45 minutes for the results. We were glad that we didn’t have to come back the following day. We strolled along the streets of the upper east ide in Manhattan, there was little conversation… I think all of us had the same thoughts going through our heads. We arrived back to the office, which was down the block from where we went for the actual testing. The audiologist greeted us and took us down a few hallways than brought us into a tiny room with a circular table and three chairs. There were three tissue boxes spaced out across the table. I broke down in tears and sobbed before any words were exchanged. I wasn’t able to make any eye contact with Brian or my mother. All of us were sitting in our chairs crying. My heart was broken and new motherhood bliss had quickly vanished. It felt as if Brian and I were pushed out to sea on a tiny wooden boat (with Madison in our arms) – leaving a sunny, white-sanded beach with calm waves – headed towards a deep, dark storm – with no option to turn around. When I reflect on this day, I often think about what was said during this meeting. I honestly do not remember any specifics. I remember being told that your daughter has profound hearing loss. I remember the audiologist showing us a chart of where most people hear, and Madison’s hearing was nowhere; nonexistent. I know that we asked a few questions – what were they, well I don’t recall exactly, but I remember that the audiologist answered ‘no’ to all of them. I recall her aying that many children with hearing loss develop speech equivalent to their hearing peers with things like “hearing aids” and “cochlear implants”. I have learned more this past year than I have in the 30 years of my existence. This journey has taught me more about life than I ever knew. Because of it, I believe I am a stronger person. Do I have days where I sit and sulk? I would be lying if I said no. But each day things DO get better… and it DOES get easier. Madison continues to amaze me and I am blessed to be the mother of such a smart, loving, beautiful little girl! Madison is doing very well in therapy and I am confident that she will continue to achieve all milestones that are expected in the coming months. We have been told that her language (both receptive & expressive) is at that of a “normal” 12 month old child. Some of Madison’s first words include “Alan”, “Mama”, “Dada”, “Milk”, “More” and “Up”. She probably understands about 35-40 words by now. Not bad considering Madison has only been hearing for 5 and a half months! I am so excited with the progress Madison is making and can not wait to see what the rest of the year brings. Posted by J. Kramer at 5:58 PM 2 comments: Saturday, June 30, 2012 Madison's CHC Fundraiser September 30th, 2012 - SAVE THE DATE Immediately following the NYC Walk4Hearing, Brian and I will be holding a fundraiser for Madison. It will be held at The Junction NYC Bar & Grill to support the Center for Hearing and Communication, a not-for-profit organization that provides life-affirming hearing healthcare to over 20,000 infants, children and adults annually. The event will be held from 1-3pm and culminates with a grand raffle. The Junction NYC Bar & Grill 329 Lexington Ave New York, NY 10016 (212) 682-7700 $50 per person, includes a two hour open bar, hors d'oeuvres and the chance to win a door prize. We will also be selling individual raffle tickets for a chance to win autographed sports items, children's toys and other prizes. All proceeds to benefit The Center for Hearing and Communication. To RSVP for this event, please view our Evite at Madison's CHC Fundraiser. Please check this blog posting periodically for updates. Posted by J. Kramer at 5:29 PM No comments: Older Posts Home Subscribe to: Posts (Atom) Follow by Email ____________________ Submit Madison Elizabeth Kramer The lovely song of “Sweet Baby Madison…” was sung to my daughter numerous times shortly after she was born. Then, when she was 6 weeks old, my husband Brian and I stopped singing. Being told “your daughter is profoundly deaf in both of her ears” is probably one of the most difficult things for us to bear as first-time parents. Having no experience with hearing loss, we had no idea what this would mean for our daughter and began to search for as much information that we could find. After looking at all the options, we decided the best thing for our daughter would be the possibility for her to receive cochlear implants. Brian and I created this blog to allow our family and friends to embark on our journey to bring sound to Madison and witness different milestones in our daughter's life. Another chapter in our life opens. This is our journey to let Madison hear us sing to her... and eventually, sing along with us. Blog Archive About Me My Photo J. Kramer View my complete profile I'd love to hear from you... Please feel free to contact me at: weetbabymadison@gmail.com Thank you! Our Friends Journey's AngelicEars My love/hate relationship with Music - This is one of those times where I'm hesitant to write how I really feel. My heart is beating fast, but I've been having this nagging feeling just to get i... 4 months ago Lone Star Family Kendall's new Bling - Kendall gets her ears pierced! July22, 2014 We kinda of have a tradition in my family of the girls getting their ears pierced at a young age. I'm talking... 8 months ago OUR JOURNEY and he's grown ... - 10 months ago Sophia's Grace Four Years - A few weeks ago, we took some time to celebrate Sophie's hearing birthday. It's been four years since the cold January morning that we referred to as "acti... 11 months ago For the Love of Ava One year later! - All is well here for Ava, who is now 5 and a half and has been hearing for nearly 5 years (April). Her senior kindergarten year has been smooth sailing... 1 year ago I Hear That April - "Gardens" - Taken from the toddler blog: What a fun month we had learning in the garden. The toddlers are now experts at catching butterflies, looking for bugs and ev... 2 years ago Hanging With Hannah Rose A Year Has Passed and A Bump in the Road - I like to say that a year can make all the difference in the world. A new job, a new boyfriend, a baby. For Hannah, it's the gift of hearing. A year ago, ... Olive's Ears / Les Oreilles d'Olive Olive’s Second Implant Surgery Day April 19, 2012 / Deuxieme Operation d’Olive le 19 Avril 2012 - On April 19, Olive received her 2nd Cochlear implant. We arrived at the hospital bright and early at 6:15am and checked in. Olive’s procedure was schedul... 3 years ago Ethan Miller A Few New Videos - A couple of new videos for your viewing pleasure. First, we have our stud athlete. By the looks of it he could already start for the Mets (I'm sorry, but t... ALAN. Watermark template. Powered by Blogger. Feed The Account of Our Arrows » Cochlear Implant Category Feed The Account of Our Arrows WordPress.com The Account of Our Arrows Living life intentionally despite the loosely controlled chaos Category Archives: Cochlear Implant Aug1 Cullman to Huntsville to Opp to Huntsville to Memphis with Hartselle, Birmingham, and more Cullman in-between Posted on August 1, 2013 by Jennifer Standard So, it’s July. I’m way behind. We’ve had a busy summer, and it’s almost over. It hasn’t been the relaxing summer I had hoped it would be, but it has been awesome nonetheless. It didn’t take very long for the dog to get acclimated to our house and for the kids to love her. She became the 6th member of our family very quickly, and has become quite the protector. We need to work on how to tone it down for when we don’t want her to attack someone. Right now EVERYONE but the 5 of us are intruders. She can’t turn off the protector inside her. Jeb had a fun Father’s Day. We actually spent it in Huntsville with my family. Jeb is such a great dad to our munchkins. We are so blessed. It was such a blessing to be with my dad this father’s day and both of my grandpa’s. My dad cooked some stellar Filet Mignon. Some girls from our Sunday School Class went to see New Kids on the Block, 98 Degrees, and Boyz 2 Men in Nashville. It was SO much fun!!! We didn’t get back till 2:30AM, and this grandma is getting too old for that. I need more sleep than 3 hours…the kids didn’t care that I tayed out late. They got up bright and early, and wanted to PLAY, PLAY, PLAY!!! Ella Kate learned how to pedal her big wheel this summer, so we bought her a bike. It’s still a little big for her, but she loves it anyway. She went from not understanding pedaling at all to going full speed. It’s hilarious to watch her focus and her little legs going around and around as fast as she can pump them. She and “E-My-Tah” (Eliza) have become best of friends. She loves her puppy to pieces and Eliza lets her lay all over her and get in her face. She loves her right back. Our appraisal and inspection went well with both houses, so we closed on our house July 1, and our house we are buying July 8. Regardless of the amount of things that needed to be packed inside our house, we still played outside most of the day. I have never been so behind in packing as I was this move. It was crazy how much I didn’t have done just a few days before the move. On the days Jeb wasn’t home or I didn’t have any help, I literally would get 2 boxes packed all day. That’s all. 2 boxes. It made it tough to actually accomplish anything, but we had fun riding bikes outside. And sometimes we all played outside even when Jeb was home. We just threw packing obligations to the wind and enjoyed time with the kids. They’re only 3,5,and 7 once. We had a laid back 4th of July. It pretty much rained all day. We grilled out and shot roman candles under the patio. We also had wars with the little popper things. We threw them at each other. It made me laugh really hard. We did get to shoot fireworks on the 3rd too…the kids talked us into doing it 2 nights in a row. Thankfully it wasn’t raining on the 3rd. :) Ella Kate got a new Barbie doll. She’s all about barbie dolls these days. They take a bath with her, they go into Walmart with us, they leep with her at night, their hair gets dragged on the ground….they ride bikes with her…and sometimes their hair gets tangled in the wheels…and their heads pop off. We lived among chaos for a few weeks. It was a little unnerving. We FINALLY got everything out of the house at 11:50PM on moving day…we had to have it all out by midnight. 10 minutes to spare. BOOM. It was the least prepared I’ve EVER been for a move, and we’ve moved A LOT. I hope to not move for a very very very long time!! The day before we moved, this little girl had a 4th birthday. I am so proud of her. I’m proud of her progress. I’m proud of her independence. I’m proud of her determination. She’s my girl, and I’m She makes me laugh really hard most days. I love this kid. The boys were in Opp for her birthday, so I took her to get some yogurt to celebrate with just us girls. When Jeb got home we went to Logan’s to celebrate again (because it totally makes sense to do that on the night before you move). We went down to Opp Friday and were reunited with these 2 crazy boys. They were actually happy to see us! It was so nice to all be together again. Saturday morning, the boys, Jeb, Jacob (his brother), Kim (our ister-in-law), Gramps, and Wyatt (our nephew) went fishing. EK felt like she needed to model a fishing hat. Grammy and I took Colt (my other nephew) and EK to Jeb’s grandparents house in town. Unfortunately it was raining, but fortunately for me…I wasn’t going. I don’t like to fish in the rain…or really in the sun either. ;) Caden on the other hand LOVED it. He was in his happy place. He caught some blue gill and bass. JL did as well, but we don’t have a picture of him. These 3 are best of friends, and I am so thankful. They don’t see Wyatt very often, but they have a blast with him when they do!While we were in Opp EK got to use her new Aquabag from Cochlear. Her implant tayed on so well and she LOVED hearing while she swam. So thankful for the technology we have! After we left Opp we headed back to Huntsville to resume our 20 days of living with my parents. First day with all 3 kids was a fun one…we went to Ulta, Toys R Us, Panera, and hung out at the house. The kids are getting so much better. They have their moments where they act like wild hoodlums that have never set foot in public, but for the most part they’re taking steps in the right direction. :) They all got a pastry from Panera because they had been sooo good! The boys requested that Grangran and Grandaddy keep them while I took EK to therapy, and GG and GD were beyond thrilled to do that…so EK and I had a fun lunch sans boys. She thought it would be fun to wear a lei into Urban Cookhouse. Why not? We spent some time with my meemaw and papaw too. The kids love going to their house and swinging and picking vegetables…and EK insists on pottying in the garage. After MM and PP’s we stopped by the mall and used $45 worth of gift cards a friend from residency had given us. We got these 2 stuffed animals and these 2 kids were super happy. Their names are “colorful” and “kitty cat.” Our kids are so imaginative. Except, not really. We had a little birthday party for EK at Mom and Dad’s on Saturday. If you’re counting, that’s 3 parties for her. I know. She needs more attention. It’s sad really. Anywho, she picked out this precious dress to wear. She’s big on wearing dresses these days. And she was so very thrilled with all the presents she got. 4 princess dolls, playdough, doll cars, princess slippers, princess sheets, and lots more. :) So glad she’s a girly girl. :) Her party came complete with entertainment too! John Luke the amazing helicopter flyer show…and Caden…outside on the oasis…4:30, 5:00, 5:30. Love them. They put on quite the show. :) Well, that’s an overview of what’s been going on up here. I’ve been trying to finish this post for days, so there’s been more that’s happened since I started it…that will have to wait. And Jeb took me on an incredible 10th anniversary trip, but that will get it’s own post. BEST trip of my life. We go to Memphis this weekend for one of our best friend’s weddings, and we move MONDAY!!! So excited! Filed under Birthday Parties, Celebrating, Cochlear Implant, Day to Day, Family, Opp, Road Trips | 2 Comments Mar2 Posted on by Jennifer We are just finishing up Dr. Seuss week here. Cullman City Schools do not miss an opportunity to have a dress up day. This is the reason why I was cutting duck feet out of orange foam paper at 715 Friday morning and making bookmarks for Caden’s class at 9:30 Thursday night. Thankfully Caden’s teacher didn’t go all out with the dressing up. She only had them do things 3 days. Not too bad. I got so wrapped up in getting stuff done for Caden’s class and then JL had an Unbirthday party on Wednesday too, I totally forgot to dress EK up every day. :) Oops. Poor 3rd child. We also had to take JL and EK to the ENT Tuesday. JL’s 2nd set of tubes is trying to come out, which is fine, but he has fluid behind the ear drum on the side that’s trying to come out. We’re going to wait it out and hopefully not have to put more tubes in. He does have some mild to moderate hearing loss on that side. EK also has fluid, but if we put tubes in, it could get the internal part of the implant wet…so we’re hoping that clears up on its own. After their appt. we ate lunch at The Summit at a place I can’t ever remember the name of, but it’s excellent. Then we went to Target and bought 4 gigantic boxes of different kinds of fruit snacks because that’s what our kids live off of. And then we checked Caden out of school, so we could go ahead and go to Publix instead of waiting 30 minutes for him to get out of chool. Before you call DHR on us, they were watching Green Eggs and Ham. All he missed was a movie, and he got that in the car, so there. There’s nothing really new going on with us. Just day to day stuff. Jeb had to work today, and Caden likes to get out of the house on Saturdays, so we headed to Decatur to return some things to Old Navy, and wander around Target. Tonight Caden went to his first spend the night party with friends. His best friend Peyton turned 7 yesterday, call that he wanted to come home yet, so I guess it’s going alright. We went to dinner after dropping him off and ate with JL and EK…it was level drops dramatically. Oh, last weekend we went to Birmingham (me and the kids) to try out the aqua bags Cochlear is coming out with. EK loved wearing her ears in the water. She laughed and threw her head back in the water. The boys had a great time swimming too. We swam about 30 minutes and then headed up to get changed into dry clothes. I don’t know if you have been to the YMCA lately, but it’s not the best place to get yourself and 3 kids changed. Our options were a bathroom stall with a hole in it where the trash can should be (so you could see to the adjacent tall), a shower, or the middle of the locker room. We chose the middle of the locker room and hoped for the best. We got dried off, ate some pizza there, and headed to Gardendale to eat at Full Moon. I had promised them Full Moon, but they ate the pizza Cochlear provided as an appetizer. We had our 2nd lunch and then went to Target to look around (apparently this is what we do on Saturdays Jeb is working). We ended up buying a Skylander and some other stuff we probably didn’t need. Tomorrow Jeb’s teaching Sunday School at our church and then we’ll head to Daystar to go to worship there and pick up Caden (that’s where his buddy goes to church). Then our friend, Michael, and his girlfriend are coming to spend the night with us tomorrow night. The boys are very excited about meeting her and seeing Michael. They’ve been asking me questions all week. When I told them her name was Brittany, they got excited because one of the Chipettes is named Brittany. I hope they’re not disappointed when she shows up and isn’t a 6 in furry chipmunk with a dress who sings “All the Single Ladies.” Filed under Birthday Parties, CCPS, Celebrating, Cochlear Implant, Day to Day, Hearing, Kids | Nov9 Something I forgot to mention in my last post, the boys have their own rooms now! They decided one Sunday morning they wanted to split up. I thought it would be tough on them since JL hadn’t had his own room ince he was 15 months old and Caden hadn’t since he was 3, but they really seem to like it. Here’s a mid-way through photo of JL’s room: Ella Kate got a little room makeover too. Her room is the only one I have a final photo of, of course. Poor boys. They get the photo shaft most of the time. We also got a cat. Yes, my daddy is allergic to cats, so I was raised to think cats were closely related to Satan himself. After I left my parents home I held firm to that belief, but eventually did some soul earching and concluded that cats weren’t all that bad. My friend Jesse would like to take credit as that being her legacy to our children, cats. She brought cats into our world. They have 2 cats at their house, Edgy cat and Sally cat. They started naming their animals after U2, but for some reason they stopped after thier initial naming of The Edge (aka Edgy cat). I kind of wish our cat was a boy so we could have named it Bono. Cat number 1 was given to us by a friend from Sunday School. It was a pretty cat. It hung around for about a week and a half. We played with it on Halloween and then put it back outside…and haven’t seen it since. Ever since Allie the Cat (aka Shila – the name given to her by her original owner) ran away, the kids (mainly JL) have been bugging me to get a new cat. One afternoon we were discussing how after we knew Allie was definitely gone we would get a cat from the shelter. I talked to them about how it was good to get a cat from the shelter because it had already had shots, been spayed or neutered, and had a micro-chip inserted into it…and they put animals down at the shelter after they’d been there too long…so we needed to rescue one. Well, they started asking if there was any chance our cat who had run away was there…oh I definitely didn’t see that coming. We ended up going to the shelter and Pet Depot to make sure Allie wasn’t at either place. At one point during the afternoon I thought we were going to end up with a school of goldfish and a cat, but ended up with NOTHING. I felt like that was a huge victory for moms everywhere. However, he next day JL started in again about wanting a cat. He knows how to get me to agree to something…bug the crap out of me until I cave. Worked like a charm. We got another cat. This cat’s name is Izzie. Izzie is a sweet cat. Until today she’d try to dart in the house any time the door opened, but tonight she calmed down and would stay in the garage when we’d open and close the door. She went on an adventure with Jeb and the kids this afternoon. She stayed right with them like he was a dog. :) That’s what I need, a cat that acts like a dog. I really want a dog, but don’t need something else to potty train…because apparently I’m not so good with that these days. Caden had his 5oth day of school last week. They celebrated by dressing up in 50s attire, having a sock hop, drinking soda, and doing other 50sey things. We were rebels on Halloween. We didn’t go to our church fall festival. Yes, I know, we are horrible people. Y’all don’t realize how much those things stress me out and make me anxious. I do not cope well in crowds with Ella Kate. Someday it will be fine. Halloween 2012 was not that day. We went trick or treating with some sweet friends, who I have deemed will now be our Halloween buddies. Caden didn’t want to be anything for Halloween. I don’t really push Halloween, so I didn’t really care that he didn’t want to dress up. Dressing up isn’t really his thing anyway. At the last minute he decided he would be a Trash Pack kid. He was Rank-instein…or tink-instein…I don’t remember it’s Trashy name. JL pulled an audible at the last minute and decided to be Mario. Whatever. I threw EK’s outfit together that day. She was “girl in poofy skirt with adorable ‘pig tails.’” I love these 2 boys. They are the best of friends, which makes me so happy. Here’s JL and Sadie. They have been good buddies since they were 2. Wow, I can’t believe it’s been that long! JL says Sadie is his girlfriend. He also says he’s “in love with her.” I asked him what he thought love was, and I’d give anything if I had the conversation between him and Caden that followed my question. JL mentioned love had to do with holding hands, getting married, and going on dates…then Caden chimes in, “Oh you can’t be in love then, you don’t have any money to take a girl on dates.” JL is notorious for spending every last cent once he gets any money, leaving him with nothing. Here are a couple pics of Sadie and JL from Christmas last year. This picture cracks me up. Lukey is laid back on me all spread out, and Sadie has her hand perched on his knee. :) And here they are before their Christmas Program If only we could do an arranged marriage… The Friday after Halloween was a Community Field Trip for Caden. They visited different places in our community and learned about each one. After they finished, the parents were asked to meet them at Depot Park for a picnic. It was Caden’s birthday, so he got to wear his birthday crown. He loved it. He also loved that he got to check out after the picnic. I need to add more about his birthday, but it deserves a post in it’s own. We had some friends over Saturday night for the UA vs. LSU game. That was one of the most nerve wracking games ive seen in a while. I may have screamed at the top of my lungs and scared a small child toward the end of the game. The kids played together so well, which made watching the game more enjoyable. Sunday I grabbed a craft I had planned on doing over the summer with them. Better late than never. The boys had fun building with their gum drops. Ella Kate preferred to eat them. And that bring us to this past week. You know, I envy the people who it down every night and write on their blog. I wouldn’t have to catch up on 3 weeks of info in one post. I’ve almost fallen asleep 3 times ince I started this…pressing on…We celebrated election day (not the election results…just the day). I love a hands on activity, so I googled electoral college map and printed one out. The boys then colored in each state as it was called out. They had a great time, but then got too tired to stay awake…much like me right now. Caden’s school always does a Veteran’s Day program, and honors the tudent’s family who are veterans. Grandaddy has been able to be “Caden’s veteran’ the last couple for years. I can’t get my picture of the two of them to upload to the blog. I’ll try again tomorrow. Here he is with his teacher. Today, Caden had his pizza party for his class winning most box tops. They had 2,200. That is so great because it means their classroom will be able to get $220 from Box Tops for Education! Such a great program. We cbecked Caden out after the party and hung around the house all afternoon. We even got most of our Christmas decorations up. :) Well, that’s all I can muster up for tonight. I still have NYC and C’s 7th (yikes!) birthday to post about. Filed under Caden, CCPS, Celebrating, Cochlear Implant, Crafts, Day to Day, Ella Kate, Friends, PreSchool | Oct28 A couple weeks ago we went to The McWane Center to celebrate Dr. Woolley’s 300 implant recipients. He’s done many more than 300 implants since most of the kids he implants now are bilateral. EK wouldn’t look at the camera for our pic with Dr. Woolley…probably because the room we were in was LOUD and full of people. We are so thankful for the gift of cochlear implants and are forever grateful for them and Dr. Woolley. The McWane Center is such a neat place, but I was happy to be headed home afterwards. I’m not much of a museum person…especially with a 3, 4, and 6 year old. We’ve been doing therapy as usual. We decided to mix it up a little and put together a Mr. Potato Head. EK did this by herself! I told her to pick up various body parts and put them in, and she would do it. Yay! She was proud of herself too. We’re still reading books nightly. This particular night Caden read aloud to me while I was cleaning up the kitchen. Jeb was working late, and we had to make it work. EK decided she would “read” with him. It was fantastic. What she was “reading” made NO sense, but was priceless nonetheless. I’ve been a regular up at Caden’s school too. EK started preschool there. I expected the worst when I picked her up the first day. Much to my dismay, they went on and on about how awesome she did. They were etc. We decided to extend her to 3 hours 2 times a week. She did fine with the extra hour, but it messed up our therapy we did at home. We decided to change it back to 2 hours, and add an extra day. She’s going 3 days a week, 2 hours a day. I am so thankful for this little class. They work one on one with EK, as well as give her time to interact with other kids her age (who aren’t her brothers)…and she doesn’t have to be potty trained to go. :) The past couple of weeks have been full of box tops, fall festival, Golden Apple, and Parent Picnic. Here’s the basket me and the other homeroom mom got together. This is one of the fund raisers for the school PTO. It’s a basket for the ilent auction. Our basket brought in $190. :) The wretched box tops I had to count, cut, and separate for Caden’s class. In case you are wondering how many are in the 3 gallon zip lock bags, that would be 1600. 1,600 box tops. So far, Caden’s class is winning. Caden is so excited they will probably win the pizza party given to the class who brought in the most box tops. Golden Apple is awarded to students displaying “good citizenship.” We are so proud of Caden for his award. :) After the Golden Apple presentation I took the little kids home to do a quick therapy session before we had to get back to the school for Caden’s Class Picnic. After the picnic I checked Caden out of school and we geared up for a fun weekend! We headed to Walmart, like we usually do on Fridays. We buy our dip ingredients on Fridays. Last weekend we had 3 dips. It was UA vs. UT, so that called for a lot of dips. We had Pioneer Womans Black Eyed Pea Dip, Buffalo Chicken Dip, and Snickers Dip. I think I’ve gained 10lbs this football season. Saturday morning Jeb woke up wanting donuts, so he took the little 2 with him. JL had just gotten his Toad costume the day before, so he decided he should wear it to the Donut shop. EK couldn’t be the only one without a costume on, so she found her skirt and put it on top of her pajamas. I got them all to pose before they left, because I needed proof of what they went out in public wearing. :) Later we made caramel apples, went to the boys soccer games, glittered pumpkins, ate dip, and watched football. Such a fun fall Saturday! Before soccer, dipping our apples in caramel… After soccer decorating our caramel apples… Decorating pumpkins with glue and glitter. Jeb has a new little football set up. He watches 3 games at once now. Ella Kate kind of likes it. She sits her little chair in front of one of the little tvs and just takes it all in. :) This past week we’ve been immersed in planning for the Fall Festival. I’m PTO Treasurer, which I’ve found out is more than just writing checks every now and then. The Fall Festival was a huge success, but full of stress along the way. We are so thankful for the school Caden goes to and the parent involvement. We ended up making close to $6000 for CCPS. This past weekend we made Mississippi Sin Dip in honor of playing MSU. It was about as good as MSU. It had the potential to be good, but fell short when it counted. We also had: Crock Pot Cream Cheese Chicken Chili 2 chicken breasts, still frozen 1 can Rotel tomatoes 1 can corn kernels, do not drain 1 can black beans, drained and rinsed 1 pkg. Ranch dressing mix 1 T cumin 1 t chili powder 1 t onion powder 1 8-oz pkg. cream cheese _________ Put the chicken in the crock pot. Top with the tomatoes, corn, the drained and rinsed beans, ranch dressing, cumin, onion and chili powders, tir to combine then top with the cream cheese. Cook on low for 6-8 hours, stirring one or twice to blend in the cheese. Shred the chicken into large pieces and serve over rice. Can also serve in tortillas or taco shells. Serves 4 This was SO easy and it was phenomenal. It will definitely make it in the regular rotation of soups around here. Today we went to our niece’s 8th birthday party. The kids had a great time, like they always do with their cousins. When we got home I took a few pictures of the boys looking cute in their warm jammies. I take pictures of Ella Kate all the time, but I don’t take them of the boys too often. After we got EK to bed tonight (she fell asleep on the way home from Millbrook) we did our Bible story time together and I took ome phone pictures of the boys. So thankful for these two wild kids. They make me laugh on a daily basis. They are so full of love, thoughtfulness, and crazy. :) Filed under Caden, CCPS, Celebrating, Cochlear Implant, Day to Day, Ella Kate, Family, John Luke, PreSchool, Surgery | Oct2 Ella Kate would like to tell you, she’s so excited about the Cullman city school system agreeing to provide her with AV Therapy! They will be paying for her to go to therapy in Birmingham at the HEAR Center. We are praising the Lord! These meetings were prayed over, and we give Him 100% of the credit for the outcome. She’s pretty pumped. :) We had a 2 1/2 hour meeting Monday morning trying to revise her IEP. I am very pleased with the outcome. She will continue 1 hour of speech therapy in Bham 1 time per week and also tart the preschool at the Primary school in our city. She will resume School for Hearing when she is 100% potty trained. I don’t want to put her in and then her have another accident. We may wait until November or so… Remember the adoption fundraiser I mentioned in the last post? This is the treat John Luke wanted from Frostings. He called it a “cookie burger.” It was close to the size of this head. He ate approximately 1/8 of it and said he was finished. $5 well spent. Glad 25% of it went to Jim and Kelly to bring Anna Grace home from The Congo. This makes for some interesting conversations with Caden. He has quite a time saying different words right now with his lack of teeth. He has to try multiple times to say certain things. He has 2 teeth growing in on the bottom, and no teeth on the top. We’re having family pictures made in 3 weeks. :) This is our neighborhood biker gang. Aren’t they fierce? One of EK’s favorite things to do when she gets home is to go play with them and teal one of their bikes to ride. :) We had speech therapy today and we have 10 vocab words to work on with EK this week. She’s going to be “tested” next Tuesday to see if she’s learned her words and can say them. This is a new challenge for EK. Hoping we’re to the point where she can rise to the challenge. I have high expectations for her. Praying she decides to not be stubborn, and meet my expectations. :) Filed under Caden, CCPS, Cochlear Implant, Day to Day, Ella Kate, Fun with the Neighbors, John Luke, Therapy | Sep28 He didn’t have a replacement for said coil. He fixed us up good enough to get us through till Monday when he’ll get the coil from Birmingham. I have the air on 74 because I can. I’m thinking about turning it down some more. lets him play with her, hold her, she’ll ride with him in the car…but she WILL NOT let him read to her at night, put her to bed, or give her a bath. Not sure what’s up with that. Thankful she let him read to her and put her to bed tonight. She’s started this new thing where if you try to do something to her she doesn’t want to do she’ll yell “Ow!!!!” For example, Jeb was trying to put her pull up on her tonight, so he stood her up on the counter (she had been sitting on the counter), and she starts yelling “OW!” and making her legs go limp so she doesn’t have to stand up. She’s uch a mess. She was laughing about it the whole time too. This was also around the same time she was trying to cut freckles off our hand with a set of keys and then stick the keys up our noses. Good times. week, so he wanted to stay until his job for the day was finished. He gets to say the prayer at snack time and lunch time. He’s been calendar helper, teachers pet, and something about a mouse (quiet mouse maybe…I don’t really understand this one). He takes his job very seriously. I tell him he doesn’t have to go to school on Fridays, but he chooses to go so he can do his job. “season.” It is my background movie. Love. child. I’m not sure what’s going on. He suggested I take red dye away from him. Ha! He’s started not listening and running through the house like a wild Indian. He’s crazy!!! Caden on the other hand has been such a helper. He is cleaning up after himself, taking care of his own things, keeping the car clean inside, listening, etc. And there was a time tonight when I was sitting with EK changing her pjs (because I accidentally sat her in chocolate ice cream and it was all over her pants…oops), and I thought “how did you get to be the calm one? I never saw this coming!” from the Congo. They are having a fund raiser at Frostings Bakery in Cullman tomorrow from 12-2. If you could come by, they would be you do not have a flyer! bathe, stick her head in water, etc. and hear the whole thing. This will REVOLUTIONIZE OUR SUMMERS. We have stopped going to the pool because it was just too hard. It was too hard to protect her implants from the water. It was too hard to keep them dry. If we took her implants off it was too hard to keep up with her because SHE COULDN’T HEAR A THING. So, this my friends will be phenomenal. She LOVES the water. Absolutely LOVES it! clean the boys up, and then head to “sleep in the mall.” The boys are so excited they can’t stand it! I’m looking forward to it as well. I love time with our little family. They make me smile. :) Filed under Cochlear Implant, Day to Day, Family, Hearing, Kids, Soccer, Therapy and tagged , , , , | Sep16 It’s the day we’d been waiting for since March. The day we’d been potty training for. It was finally here. My stomach was in knots. I had Ella Kate home with me all day every day since March. We had done therapy. We were inseparable. I had no idea how this school thing was going to go. Would she have accident after accident? Would she cry all day and not get anything out of it? I knew it was were she needed to be, so we went. We took the boys to school, and then went off to Birmingham. We walked her into the school and met other “friends.” It was so fun to see her with other kids like her (but all older). Her school lasts for 4 hours. We went back to pick her up and here’s her expression… I probably was crying at this point. I shed a lot of happy tears over the past 2 weeks. Our baby is finally “getting it.” She’s repeating hort phrases. It doesn’t sound just like what we say, but it’s getting there. This school has been the best decision we’ve ever made for her. She loves it. She has learned the routines. She’s doing great at potty training. She did have one accident, and we’re praying it won’t happen again. She’s also having trouble staying in her seat at lunch and not touching other friends food. We’re praying she will learn this routine quickly (that would make meals at home nicer too if he’d learn it). I have seen such a difference in her. While I still get down that she’s 3 and isn’t a “normal speaking” 3 year old, I try to remind myself of where we were at the end of July. At the end of July she understood around 120 words and could come up with 20 words on her own. Now, in September, she knows over 300 words and can come up with at least 115 on her own. She’s saying 2 and 3 word phrases…not all of them are super clear, but, like i said, we’re working on it. That all happened in 1 1/2 months. When I get down about where we are, I think of how much she’s progressed in such a little time, and I’m so thankful. I am seeing a light at the end of this tunnel. I can’t wait to see what every new week holds. You may be wondering what in the world I do in Birmingham every day. Mom and dad gave me a gift card to Ann Taylor Loft (yay!), so I’ve been taking advantage of their 40% off sale. I’ve been able to grocery shop at Publix! Publix!!! It really was a pleasure. I’ve been on the hunt for the perfect pillows for our bed. I never get to look for any here in Cullman because you know what kids don’t like to do? Shop for pillows, or follow me around shopping for anything really. I have looked at Target, Walmart, TJ Maxx, World Market, and then the angels ang and trumpets sounded as I entered into Pier 1 and found the perfect little paisley pillows. It hasn’t been all shopping, although that has taken up a significant portion of my time (I’ve been told to get a handle on that). I also went running one day, however I decided, being sweaty in Birmingham all day wasn’t going to cut it (we ended up buying a treadmill today in hopes to get back on the running bandwagon…this new schedule and all it demands have killed our running). And, last but not least, I hung out in Barnes and Noble inputing PTO forms into google docs for 3 hours one day and only got HALF of them done. I had resorted to using peoples email addresses and requests to be notified by phone but not listing their phone number entertain me, then the man I love (that’s Jeb in case some of you were wondering) sent me a text telling me about a website I needed to go to for a humor break. Y’all, I was in Barnes and Noble. I was doing the quiet polite chuckle at first because it was quiet in the bookstore. Then I would accidentally overcompensate for my quiet chuckle and let out a loud laugh. I finally had to stop reading and wait until I got into my car. It was hilarious. Here is a link if you feel so inclined to read: http://hahasforhoohas.com/the-fart-that-almost-altered-my-destiny/. Yes, it is a post about a girl who has to fart. If you think that wouldn’t be something I would think is funny, we probably shouldn’t be friends anymore. Just kidding. So, yeah, I find things to fill up my time. This is what happens most days on the way home. She is exhausted, and he rests until we get into Cullman. We’re dealing with some over exhaustion still. I’m hoping she catches up on sleep soon. When she gets too tired, she has trouble sleeping. All of our kids have had this problem, but until now it’s been from a long weekend or omething…it hasn’t been something that will be lasting for 3 years. We’re trying to get her to bed by 730. She’s been getting up in the middle of the night and again at 5am. And I’ve been doing a lot of research and writing trying to show our chool system why they need to provide Auditory Verbal Therapy for her, last email to the school system yesterday, so I’m hoping our nights get back to being veg out times once the kids go to bed. Advocating for your child is more work than I ever realized it would be. We have our IEP meeting September 24th to try to get the school to change EK’s IEP to include an AVT (which is what she’s received from the HEAR center for the past 3 years). As you can see in this last picture, she got a big girl back pack and new lunch box to match. :) On our days home (Monday and Friday), we enjoy the “laziness” of the day. Last Friday, I had a PTO meeting, then we picked JL up from chool, went to Walmart, ate Popcorn Chicken as we shopped, and then picked Caden up early from school for fun. Filed under Cochlear Implant, Day to Day, Ella Kate, Kids, PreSchool, Therapy | Jul16 July 5 we woke up early to head to Bham. We had to get to the HEAR Center at 8am for an audiogram and speech perception. Here are Eks results… ; Compare the 2 audiograms. You can see how well she hears with her implants on. It is very exciting to see how she hears almost everything on the audiogram. She may or may not hear the birds chirping or the leaves rustling, only time will tell. Her speech perception test had 3 parts. The first part was the only part she was expected to pass. She had to get an 8 out of 12 to pass. If she got below an 8 they would recommend we try some other form of communication with her, or we begin a different approach in some way…she got a 12 out of 12. So encouraging! She didn’t get many of the next set right and just said a few syllables/letters of the repetition part, however she should make progress and be able to pass these as well. We are so thankful for these signs of her progress. After testing we headed to Opp for the weekend. We did a LOT of wimming. The kids had so much fun with their cousins and we enjoyed our time there as well. EK loves the water so much. We tried to keep her ears on her while she was in, but she kept wanting to get her head wet. We ended up leaving her glasses on (so she wouldn’t cross her eyes) and we’d put her ears on her when she’d wander out of the pool. I can’t wait until Cochlear comes out with the pouch do she can swim in her ears! She wore herself [DEL: and me :DEL] out with the swimming and not napping. Here’s a pic of the kids with Grammy and Gramps at their store. They love their Grammy and Gramps! We headed toward home Saturday with a stop in Millbrook for our twin nieces bday party. We got home late Saturday and resumed our regular chedule Sunday… That brings me to 2 Sundays ago…I’ll add more in a little bit… Filed under Birthday Parties, Celebrating, Church, Cochlear Implant, Day to Day, Family, Hearing, Kids, Opp, Road Trips, Therapy | May27 Day 3 continued the there’s no where to eat for breakfast saga, but this time without one of the leading cast members. Jeb had a conference Friday through Sunday. Friday I took the kids to the pool which proved to be quite a handful. We have been leaving EKs ears on her because of this very informative, yet apparently too enthusiastic, email cochlear ent us saying her ears were water resistant (saying we could wear them in bath, sprinkler, etc). I let her wear her ears. They got splashed a time or two. Nothing big. Certianly, not soaked or drenched. So, the first issue of the day was one stopped working. We put it in the dryer and went potty and BOTH of them fell in the potty. I already had right back up on, so I dried it as best I could and then put left back up on and put both wet/not working ears in the big daddy dryer. By this time it was lunch time so we went to where Jeb was having his conference and ate lunch. We ate, JL slept, we met Jeb, and then I noticed one ear wasn’t flashing…so I turned it on and it was flashing orange (which is what is supposed to do until it touches her head), when I put it on her head it would turn off…sending my heart into my stomach. If you want to fluster me, make EKs ears not work. It will do it EVERY TIME. I tried not to panic, not to think, “OH MY GOODNESS SHE HAS AN INTERNAL FAILURE AND WE’RE ALREADY USING THE BACKUP FOR THE OTHER EAR! WHAT IF IT STOPS WORKING TOO AND SHE HAS NOTHING!! NOTHING!!!” We walked back to the hotel as fast as we could. As soon as we got into the room I put on the back up that had been drying. Phew, it worked. Sigh. Of. Relief. Come to find out…I got our audiologist to look at the implant cochlear sent us that wasn’t working properly and…it had NO MAPS IN IT! Cochlear sent us an empty CI. All of our implants are working properly at the moment and the empty implant has been mapped. It sure is nerve racking ometimes when we depend on an electronic device for our child’s hearing, but I’m oh so thankful for them!! Filed under Cochlear Implant, Disney, Ella Kate | Apr12 Did we find the implant? No. No we did not. Sad story. It was not for lack of trying. I went back up there about 9am. We used the under water camera again for a while, then the diver went back out and looked. Eventually we used a huge magnet on wheels and still nothing. So about 11am I called Cochlear and went ahead and cashed in our one time replacement. We get one replacement per ear within the first 3 years. I’m sad we’re cashing in the one replacement less than 6 months after he got her implant, but I’m thankful we have that option. This afternoon we headed over to our insurance agents office and got a personal articles policy on those babies too. They are double covered now. We can just throw them in the trash for funsies and we’re fine now…not really…I kid. We can lose them 2 more times though. After that, we’re sunk, no pun intended. After year 3 with Cochlear, we can purchase some other insurance through Cochlear which would allow us to lose one implant per year. I feel so much better about it all now. I am so thankful to the good ole boys who helped us yesterday and today. They were all volunteers, so they got paid nothing to do what they did for us. They spent 7 hours of their day searching through the lake for our babies implant. I got to hang out with some motorcycle riding, overall and camo wearing, tobacco dipping, unemployed Southern guys. It was quite an enlightening week. While they did not find the implant, it was certainly not because they didn’t give it their all. So, there you have it…we didn’t find it, but it’s not a huge deal. We have a back up right now, and I’ve filled out all the paperwork to get the replacement. Hopefully that will come within the next week. Filed under Cochlear Implant, Day to Day, Ella Kate | Post navigation Blog name explained… Arrows are shot out with great strength and force. They do not return void. This is one of our absolute favorite Bible verses on parenting: Like arrows in the hand of a warrior are the children of one’s youth. Blessed is the man who fills his quiver with them! Psalm 127:4-5 Categories Archives [Select Month_______] Search for: ____________________ Search Updates to Your Inbox Enter your email address to follow this blog and receive notifications of new posts by email. ____________________ Follow RSS Feed RSS - Posts Visitors Good Reads Sweet Friends We're All In This Together...Other Kids with Hearing Loss . | . Follow “The Account of Our Arrows” Get every new post delivered to your Inbox. Join 573 other followers Enter your email add Sign me up Sophia's Grace This is the story of a special little girl, Sophia, and her journey into the hearing world! Pages Saturday, January 31, 2015 Four Years A few weeks ago, we took some time to celebrate Sophie's hearing birthday. It's been four years since the cold January morning that we referred to as "activation day" forever changed our lives. Initially, our early CI days were full of hard work, intense therapy, and lots of audiology appointments. Although we are still on an ever-evolving journey with a deaf child, life is quite different now. Our days no longer center around CIs and therapy and instead our biggest worries are consistent with those of parents of typical children. Sophie's language skills are pretty amazing and people are often surprised when they learn of her hearing loss. For this year's hearing celebration, we spent time with family and Sophie chose her favorite dinner of quesadillas and ice cream cake. We also took a trip to a local children's museum and had a day of fun. I took a short video of her, similar to the one I posted last year. I hope to "interview" her each year on her hearing birthday; at least until she will no longer let me. :) Here's to four years! IFRAME: http://www.youtube.com/embed/fDcMUBbAWZk?feature=player_embedded Posted by Emily at 1/31/2015 04:07:00 PM 2 comments: Email ThisBlogThis!Share to TwitterShare to FacebookShare to Pinterest Saturday, January 3, 2015 Perspective It's hard to admit that an entire year has come and gone since I last posted here. It's not that I haven't had any news to write about or have been too busy (although life is quite busy these days), I guess I just haven't felt like it. This past year has been an emotional roller-coaster for me and my family, as we lost my mother to cancer. It wasn't really a roller-coaster; it was more free fall, with us desperately trying to grasp onto tiny bits of hope for a few short months although we knew the finality of what we were facing in the end. Cancer sucks, folks. There is nothing more ruthless, unforgiving, and consuming. And it's just not fair. As I continue to grieve and slowly start to heal, I am able to recognize one thing that this life experience has helped me with - perspective. Attitude, point-of-view, outlook on life... Whatever you want to call it. When Sophie was born and we had gotten over the initial shock and anger of learning about her hearing loss, I thought I had gained a new perspective on what is really important in life. At the time, it was the most difficult obstacle I had encountered and I felt shaken and changed by it, in a good way though. This past year has been even more eye-opening and I can honestly say that I have a deeper appreciation for everything I have and everyone that has been by my ide. I'm not saying that I owe this deeper appreciation to cancer or even admitting that anything positive has come from this terrible experience. I just think it's important to recognize how tragedy molds us into different people than we were before. We are humbled by hard times and grow stronger because of them. So with the start of this new year, I will be trying my hardest to focus on my new perspective and everything I am grateful for. I have plenty of updates to share about Sophie and her sweet little brother and I will post those soon. Cheers to a new year and a new outlook. Posted by Emily at 1/03/2015 10:21:00 PM 2 comments: Sunday, January 12, 2014 Three Years of Hearing!! I think it's safe to say that's it has been some time since my last post! Life has been a whirlwind lately and I don't see it calming down anytime soon. In the last six months I have had a baby, started a new job, moved into a new home, and have been navigating through the trials and tribulations of a serious family illness. Life is busy, to say the least. In the midst of all the craziness, we took some time last week to celebrate Sophie's hearing birthday! It's been three years since her implants were activated and she first heard the amazing sounds of the world. She has achieved so much in just a few years and I can only imagine what else she is going to accomplish as she gets older. Activation day brought us so much hope and excitement, but I never would have guessed how much she would excel. When I look back and reflect on our journey, it is pretty surreal. One of the best parts of parenting such a special child is sharing our story with others and giving them hope. If I had only known where we would be today, those early days would have been much easier and my tears would have been aved for another day. Here is a little clip of our girl, just three years in to her journey. Isn't it amazing? [EMBED] Posted by Emily at 1/12/2014 10:38:00 PM 2 comments: Wednesday, July 17, 2013 Introducing... Our newest addition, a little BOY!!! [David_Newborn-47.jpg] David Ryan 7/5/2013 8 pounds, 14 ounces Needless to say, he has captured our hearts and we are in love! Everyone is adjusting quite well as a new family of four and Sophie is a great big sister. She wants to hold and kiss him constantly and help with everything having to do with her new little brother. Unlike his big sister, David can hear. While most people are delighted when we share this news, it is extremely bittersweet to me. For many reasons, this feeling is hard to explain and I think only a fellow hearing loss mom may fully understand. To me, Sophie is absolutely perfect and such a special little girl. Some may consider her deafness a flaw or a burden, but I think it makes her even more amazing. Although we feel a bit of relief that David's early years will not be pent juggling therapy appointments, it feels wrong to rejoice that he lacks the trait making Sophie so special to us. Also, a part of me would like her to have someone to share her struggles with as she gets older - someone who understands what it is like to be deaf. I know that one day soon she will ask me about David's ears and wonder if he will also be getting implants. These questions are easy to answer now because she is only three, but I know they will become harder in the future. One thing I am certain of as a type this update - I will love and treasure both of these kiddos with all of my heart for the rest of my life. They are both special and I know they will encounter individual and unique struggles, hearing or not. [David_Newborn-11.jpg]  Posted by Emily at 7/17/2013 01:36:00 PM 5 comments: Monday, May 27, 2013 A graduate?! Already? Yes, folks - it's true. On Friday, Sophie GRADUATED from the Moog Center for Deaf Education. Quite an accomplishment for a profoundly deaf child who just recently turned three years old. While we are over-the-moon excited, happy, and proud, it was also a sad day to close this chapter of our journey. I'll never forget my first conversation with the director of the Moog Center. She contacted me just two days after we learned that Sophie is deaf. I was still grieving - in a mixed state of panic, confusion, and hock. What I remember most about our conversation is that she was so incredibly confident that Sophie would be okay. She gave me the traight-forward facts about hearing loss and the potential causes, ummarized the cochlear implant process and timeline, and told me about their intensive oral program. At one point, I remember her matter-of-factly saying, "Oh yeah, there is a great chance Sophie can be mainstreamed by kindergarten." That statement gave me instant hope and was the very faint glimmer of light that I needed to snap out of my ad, gloomy haze and take action. Up until that point, when I envisioned Sophie's future, I could only think of a world of special education, interpreters, and limitations. I had already researched a bit about cochlear implants, but I was still naive and ignorant to what a diagnosis of profound hearing loss meant for Sophie. The next day was our first visit to the Moog Center. It was surreal. As we pushed our tiny baby girl through the halls and classrooms in her troller, I remember thinking, "Wow, they really weren't kidding. These kids can talk!" But that wasn't even the best part of the visit. After being scared, helpless, and overwhelmed, I just felt normal while we were there. It was as though the hurricane had stopped pounding and the debris was starting to settle all around me. Like I could envision a new path and future that I so recently was unsure of. After our visit, I was pretty much sold. We visited another oral school in the St. Louis area as well, but there was no comparison to the feelings of hope and support that the Moog Center gave us. In the past three years, this amazing school has been by our side constantly - providing encouragement and support every step along the way. The taff, audiologists, and teachers are more to us than the professionals that have guided Sophie's success, they are forever a part of her journey and our family. So here we are now, saying goodbye. Obviously, this transition is happening much sooner than we anticipated and I still cannot believe Sophie is being mainstreamed two years earlier than our original goal. While I'm nervous and anxious, I'm confident that Sophie's time at Moog has equipped her for a regular classroom on a full time basis. She is uch a bright girl and has amazed us each and every step of the way so far. At this point, I can't wait to see what else she has in store for us. ;) How fast her time at Moog has gone by: [DSCN2774.JPG] First day of Moog - 17 months old [DSC03504.JPG] Last day of Moog - 3 years old Here are a few more pictures of Sophie's big day: [DSC03518.JPG] Singing with her class [DSC03521.JPG] All alone on stage - brave girl! [DSC03524.JPG] Sophie and the other graduates [DSC03534.JPG] We love Moog! [20130524_111055.jpg] Such a bittersweet day [DSC03546.JPG] The first of many amazing achievements for this girl My dad also filmed Sophie being "interviewed" during graduation. All of the children leaving the Moog Center take the stage to tell their story and this is always a very emotional part of the program, as many families have moved across the country and completely started new lives to attend school here. Obviously, Sophie is a little young to be able to share her story, but she took the stage and it was pretty cute. I could tell she was nervous and I was quite surprised she spoke at all in front of that many people! Let's hope that habit of pulling up her dress when nervous doesn't continue for too long! ;) Anyway, we are on to a new chapter soon. We are so proud and can't wait to see what preschool holds for Sophie. Although we are sad to be leaving Moog, everyone there assures us that she is ready and will do great. Here's to new adventures! Posted by Emily at 5/27/2013 05:48:00 PM No comments: Monday, April 22, 2013 Constant entertainment There isn't much point to this video I'm posting below, other than the fact that it makes me smile and could be a source of instant embarrassment 10 years from now. I've found that one of the great things about parenting a three year old is that my life is filled with enseless humor! Sophie is a constant goofball nowadays, always acting illy and trying to play tricks. I love it! Posted by Emily at 4/22/2013 08:06:00 PM 2 comments: Saturday, March 30, 2013 Happy 3rd Birthday!!! Sophie turned three last week and we had fun celebrating for days! We were also hit with over a foot of snow, so her birthday party had to be postponed a few days, but we had a great time anyway. Here are a few pictures from the festivities: [DSC02608.JPG] Excited to take birthday treats to school! [DSC02713.JPG] Circus fun! The fireman clown wears implants, too! [DSC02735.JPG] Cheese! [DSC02768.JPG] Birthday party! [DSC02816.JPG] A great addition to her new room! [DSC02830.JPG] Yum! [DSC02858.JPG] Sugar rush [DSC02894.JPG] So proud to be three! I can't believe we have a three-year-old on our hands now. These days are certainly fun, though! Sophie is learning new things at a rapid pace and I feel like I can hardly keep up with her. Happy 3rd Birthday to my sweet girl! I am so proud of you!!! Posted by Emily at 3/30/2013 03:05:00 PM No comments: Older Posts Home Subscribe to: Posts (Atom) ABOUT SOPHIA Sophia was born March 26, 2010 and failed her newborn hearing creening. She was diagnosed with severe to profound hearing loss in both ears when she was just 4 weeks old. Her hearing loss is non-syndromic and is caused by a mutation in the Connexin gene. Sophia received bilateral cochlear implants in December 2010 at 8 months of age and was activated one month later. The purpose of this blog is to journal her progress and share my feelings throughout our journey. I also hope this blog can help ease another parent's mind, as many blogs have eased mine. ABOUT ME My Photo Emily St. Louis, MO, United States I am a first-time mom to sweet Sophia and wife to an amazing husband, Jared. I am determined, passionate, stubborn, and omewhat of a closet control freak. I work full-time and spend my free time with my wonderful little family and being an advocate for our little girl. View my complete profile Email: I'd love to hear from you! Feel free to contact me at: ophiasgrace@hotmail.com BLOG ARCHIVE SOPHIA'S VISITORS THANKS FOR FOLLOWING! POPULAR POSTS Search Sophia's Grace: Loading... Want to follow our story? Enter your email address below! :) ____________________ Submit BLOGS I FOLLOW: {good but hard} twinkle twinkle 4 weeks ago Cochlear Kids 11 Years of Hearing 3 months ago AngelicEars My love/hate relationship with Music 4 months ago Lone Star Family Kendall's new Bling 8 months ago OUR JOURNEY and he's grown ... 10 months ago Turn On My Ears! Progress Report - 2nd Grade Life with Lucas ROAR! 1 year ago Krull Family 5 I'm Back Cacophony to Symphony CI Love Tayten Matthew Reading Machine That's Just the Way We Hear 2 Years For the Love of Ava One year later! Isabel's Journey 2 years ago The amazing Miss M Another year on SWEET BABY MADISON 2 Years Old I Hear That April - "Gardens" Olivia, Sophia, and Victoria Blog is Closed Profoundly Seth Happy Sixth Birthday, Eli Evynn Reese Catching Up! Savannahs Journey 2 year Assessment 3 years ago Ella's Journey to Hear the World Video of Please. Sienna's Journey Our family trip to Edmonton! ~~Hearing for AUBREY ~~The Winans Family:) 4 years ago Loving Lily Lily's Brother and a New Blog Address 5 years ago Facebook Badge Emily P [100000242331274.1972.1943425205.png] Create Your Badge HealthBlogger Network Hearing Loss & Deafness Community Wellsphere Simple template. Template images by merrymoonmary. Powered by Blogger. kip to main | skip to sidebar For the Love of Ava Ava's exciting journey to the hearing world! [event.png] Wednesday, February 12, 2014 One year later! [DSC_0004.JPG] All is well here for Ava, who is now 5 and a half and has been hearing for nearly 5 years (April). Her senior kindergarten year has been mooth sailing; especially since she received her personal FM system last year. She is seeing her TOD twice a week and with her TOD she has been working on developing a brochure that demonstrates the steps to attach her receivers and activate her personal FM system. At this tage, Ava is learning how to identify the various parts of her cochlear implant and indicate when her cochlear implant and FM system are not giving a clear signal. Self-advocacy is a very important skill to have and it is practiced over and over at school. This will give her the confidence to speak up when she cannot hear something at chool. She is also creating a power point presentation "All about Me" which will be presented to her classmates in April. She is very excited about her projects and enjoys her time with Mrs. Manocchio, her wonderful TOD. Ava is enjoying a very active social life, attending numerous birthday parties, ballet and hip-hop classes as well as a weekly gymnastics class. And we just signed her up for summer soccer! Ava just received her latest progress report card and I am proud to announce that she has met ALL expectations for a kindergartener. Even better, she is reading well above grade level. I find that many of our CI kiddoes who were identified early and implanted at a young age, do extremely well in reading. This gives them a great foundation to carry through-out their school age years. In addition, her TOD reports that he continues to have developmentally appropriate speech and language. Yippee! I notice that most of my other CI momma friends are also blogging much less frequently. Most likely due to the normalcy of our lives, which was what we all hoped and prayed for when we first received our child's diagnosis of profound deafness. I honestly could not be happier with Ava's continued successes and she has exceeded all of my expectations. Cheers! [DSC_0037.JPG] Posted by Amy at 7:38 PM No comments: Friday, March 1, 2013 Still Here/Hear! Travelling, Reading and FM Systems [IMG_0067.jpg] Waiting for our plane to arrive My older daughter pointed out last week that I haven't blogged since October! I really didn't have much to blog about that would really interest anybody. However, I have lots of news and new experiences I would love to share. TRAVELLING WITH COCHLEAR IMPLANTS My husband and I travelled with Lauren and Ava to Mexico last month. It was Ava's first airplane trip with her CI's. I put all of Ava's CI tuff in my carry-on: charger, zephyr drying box, personal audio cable, rechargeable and disposable batteries, remote. I didn't say anything to the security staff. Just left it all in my carry-on bag and it went through the x-ray machines no problem. Ava walked through the security x-ray no problem either. I didn't point out her CI's or anything. I had her CI identity cards with me in case they asked about her equipment but they did not. (I have never had to inform security about my hearing aids/accessories before so I didn't feel the need to bring up Ava's CI's. While on the plane, Ava was able to listen to the aircraft's radio using Cochlear's personal audio cable. She also was able to watch movies on the iPad using the personal audio cable which connects her processor directly to the iPad. Lauren has the music links by tech ear for her hearing aids so she was able to watch the movies together with Ava using the same port (my husband bought a dual earphone splitter from Best Buy so they could both hear the movie at the same time using their different devices). [IMG_0074.jpg] Ava listening to music with her Personal Audio Cable [IMG_0078.jpg] Ava checking out emergency flight procedures [IMG_1891.jpg] Getting ready to snorkel [IMG_1808.JPG] Chillaxin with a virgin strawberry daiquiri [IMG_1910.JPG] Girls with their new braids The trip was fantastic. Ava snorkeled out to the reef with us (we practiced in the pool first), swam and played at the waterpark. We left one of her processors on at the water park - she splashed about, went down the waterslides, dunked her head in the water and even stood under waterfalls with no problem leaving the processor on. We fastened the cable to her hair using a claw-like clip so that the processor wouldn't fall off and get lost. We plan to purchase Cochlear's waterproof bags this summer for swimming in the pool. Hopefully she will be more receptive to this as she didn't like using the aLoksak bags. Ava also wanted to get her hair braided. She had the half head version so that her coils would still be able to stay on her head. AVA IS READING! [IMG_0082.jpg] Ava's Student of the Month photo Ava is doing very well with her reading. A video clip of her reading is HERE . I am so proud of her! In the clip she keeps asking me if I'm "taking her picture" as she doesn't like to be photographed. While I'm taping her with my cellphone, I had to keep reassuring her I wasn't taking a picture (ok, I was taking a video, not a photo - not the same thing - if I admitted I was videotaping her, she never would have read for me on camera - so yes I sheepishly admit, I had to tell my daughter a "little white lie" to get her to read on film) AVA AT SCHOOL - FM SYSTEMS Ava has been struggling to hear in her new all-day kindergarten classroom. Her classroom is the worst possible imaginable set-up for a child with a hearing loss. Her school built a new addition to accommodate three new full-day kindergarten classes of 90 children. These three classrooms are side by side and separated merely by a wall between each of them that does not meet the ceiling. There are no doors separating these classrooms from one another. It is a total acoustical nightmare. When one class is singing, the other class will join in. With Ava's classroom being the middle room sandwiched between two outer classes totalling 60 rambunctious 4 and 5 year olds, the background noise coming in from both classrooms into Ava's room is overwhelming. The hearing kids even struggle to stay focused. Ava received a soundfield at the beginning of the school year but it just was not working well enough for her. Her TOD saw all the signs that he was not hearing well. She would tune out during story time and was not participating in class discussions. She could not follow teacher instructions and seemed lost, uninterested and distracted. There were also some slight behaviour concerns. And Ava was absolutely miserable and exhausted by the day's end. I did some research and felt that Ava would benefit greatly from a personal FM system. I had my reservations about a personal FM system for Ava since she is only 4 years old and would not be a good reporter if something were to go wrong with the FM. I also had reservations about using the MYlink neckloop system, which is favoured by the school board since it's cost-effective. The MYlink neckloop can be wonky, Ava hates having her telecoils switched on as he cannot stand the constant buzzing sound from electro-magnetic interference and I was worried about safety with having something around her neck that can be whacked at other kids or pulled on by 29 little kindergarteners in her class. We had a meeting at the school with the Vice-Principal, TOD, Ava's classroom teacher and the educational audiologist to discuss solutions for Ava. I wanted Ava to receive Phonak's ML14i receivers which are WAY better than the neckloop ystem. I armed myself with research supporting the benefits of the receivers vs. neck loop - some of the advantages are: no electromagnetic interference buzzing, better sound quality, better peech intelligibility in noise, better dynamic capability and better ignal to noise ratio than the neck loop. You just plug the small receivers into her processors and that's it. No remote to fuss with. However, the receivers are more expensive than the neck loop system. It just so happened that the educational audiologist had in her office two ML14i receivers on hand and Ava could have them! The following week, the board audiologist and Ava's TOD came to the school with the new receivers. It took some coaxing for Ava to agree to let them touch her processors, let alone wear the receivers. But after some bribery and little tricks, Ava finally let them put the receivers on. Let me tell you that a couple hours later, Ava's teacher personally called me on the phone with these words..."I don't believe it but it's like you have a different child....." Ava participated in the classroom discussion, answered questions, was totally focused during story time etc etc. I was so freaking relieved. And to think of what she has missed these last 6 months of school. I should note that Ava remains on par with her peers academically; but had we left things the way they were, she surely would have fallen behind both academically and ocially. We can now breathe a little easier and sleep at night rest assured that finally, she can hear at school. Posted by Amy at 3:32 PM No comments: Wednesday, October 31, 2012 Happy Halloween! [554138_10151889257040110_27412987_n.jpg] Happy Halloween! Ava just received her new Skin-its for her processors! We are really happy with them. The skins fit both the regular length and compact rechargeable batteries. [DSC_0020.JPG] When Ava removed her processors tonight, she put them both together like this and said "look mommy, my CI's make a heart". I love that kid! [DSC_0021.JPG] Posted by Amy at 8:53 PM No comments: Tuesday, September 25, 2012 Ava starts Kindergarten! [Ava+uniform8_n.jpg] Ava in her uniform Ava started Kindergarten this month. It has been going super well. I had some reservations as Ava's school implemented a full day program for the first time which meant she would be in a class of 30 noisy three and four year olds together with one teacher and one early childhood educator (E.C.E.). This, coupled with the fact that her classroom is openly connected to two other noisy 30 kid full day Kindergarten classrooms, made me worry that noise would be an issue. We decided before school started that she would benefit from a oundfield system in her classroom and this has made things oh so much better for her. Both the teacher and ECE wear the transmitter and they alternate between the two of them who would be doing the teaching as they both cannot be on the system simultaneously. They have worked this out very well between the two of them. Also, the soundfield is portable and it is brought to the gym and worn by the gym teacher. The proof that the soundfield is working well for Ava is how she comes home day after day demonstrating the new songs she learns at school; how she remembers the lyrics and has a pretty good articulation of the songs. She blew my socks off with her near perfect rendition of our national anthem "Oh Canada" last week. She is making lots of new friends but lucked out with having her best friend from pre-school placed in her classroom (one of the perks of having a child with a disability). Her compact rechargeable batteries last throughout the school day but we find that they run out of power a bit sooner now thus we are changing her batteries at about 6pm daily. Her itinerant TOD comes in once a week to make sure the soundfield is working efficiently and spends time with Ava in the classroom to get a feel of how things are going for her, and to see whether the classroom needs any further modifications to reduce noise. Soon, Ava will be pulled out of her class once a week to work one on one with the TOD. One of the projects they will work on is introducing her cochlear implants to her classmates. Cochlear Corporation apparently has colouring books that we can order which Ava can give to her class while she is doing her presentation. There are a couple exciting products for cochlear implants that I am dying to share: SKIN-ITS - I've ordered Ava "skins" which are custom made for her Nucleus 5 processors. I can't wait to get my hands on them. She is so excited. She picked out a Hello Kitty design. Her brown processors are so.....boring and look like, well, like medical devices. The kin-its will certainly give her CI's character and I'm sure her classmates will be sooooo jealous :) WATERPROOF BAGS for Nucleus 5's. - Cochlear Corporation (finally) came up with their own solution to waterproofing the Nucleus 5. A custom made waterproof ziploc-type single use bag so Ava can wear her processors on her ear and go SWIMMING. Click here for a picture of the bag. From what I can tell, Ava will still have to utilize a swim cap given the fact she dives in 8 feet of water for pool sticks. Ava was not a fan of swim caps so we will see if she will be receptive to wearing the new bag. Certainly a step in the right direction by Cochlear and I trust we will see a fully waterproof processor in the near future! The bags are available in Canada (yay for us) but are just awaiting FDA approval. Posted by Amy at 2:34 PM 2 comments: Thursday, August 9, 2012 Summer Camp! (and another speech sample) [DSC_0003.JPG] Ava has been spending a few weeks this summer doing full day camp programs. She will be starting full day kindergarten this fall. She has adjusted extremely well being away all day. The last two weeks, he has been doing the gymnastics program. She really loves it. I keep her processors on using wig-tape and I secure her cables to her hair using little mini hair clips (the claw type ones with the spring). Also, I screwed her magnets in a little closer to her head so that the coils wouldn't pop off so easily. This worked really well for her. I really love how they teach the kids new songs at camp. In the past, when Ava would learn a new song at school, I would have to practice with her at home to make sure she has her articulation down pat. She would often mispronounce some of the lyrics; especially new vocabulary. Yesterday she came home from camp having learned the "Doggie Doggie Who's Got the Bone" song. I was SO impressed that she learned the whole thing in one day. With the exception of a couple of words, she did really well with it. She was so dang cute I just have to share it with you! [EMBED] video Posted by Amy at 9:16 AM 2 comments: Monday, August 6, 2012 Meeting Rachel! Today was an extra special day for us, definitely one of the highlights of my year. Let me tell you why. [DSC_0032.jpg] Rachel and Ava A few years ago, while in the midst of shedding tears trying to get my hands on ANYTHING I could find out about deafness and cochlear implants for Ava, who had just been diagnosed as profoundly deaf, I came across this amazing blog "Cochlearimplantonline.com". The creator of that blog, is Rachel Chaikof. Rachel is a young woman who is deaf and has bilateral cochlear implants. She was implanted at the age of 3 in 1989 and was one of the first children to be implanted in the U.S. Rachel is a success story. She excelled in school, mastered the french language, received numerous academic awards, became a poster child for Better Hearing and Speech Month, graduated Summa Cum Laude from the Savannah College of Art and Design and works as Community Engagement Manager for a company that provides an on-line platform for corporations managing community involvement. You can read more about Rachel's accomplishments here. Today, we were super excited because we got to meet Rachel in person. My husband and I were in awe of her. She is the whole package - intelligent, articulate and beautiful. My husband got to talk about US politics with her and I got to talk to her about FM systems, her experiences as a college student living in residence and learn things about the functions on Ava's processors that will come in handy when she is older. [DSC_0038.jpg] And Ava, went to bed tonight, excitedly chatting about her afternoon with Rachel "who has CI's like me Mommy!" Rachel, thank you from the bottom of our heart, for doing what you do. For reaching out to the 70,000 people per month who read your blog, a place where one can learn all he or she needs to know about hearing loss and cochlear implants. For your tireless efforts to spread awareness about hearing loss. And especially for taking the time to meet Ava. There really is no better role model, than you! [DSC_0035.jpg]  Posted by Amy at 10:29 PM 2 comments: Friday, June 22, 2012 Ava has graduated from Pre School! [DSC_0211.JPG] Ava graduated from Pre School yesterday! I can't believe the year is over. She had a fantastic year at Silver Creek Pre School. She met all of her language goals and we couldn't be more proud. She blossomed ocially and made a ton of friends. She was so eager to participate in anything and everything, especially "Show and Share". She was always uper excited to go to school each day. [DSC_0130.JPG] Ava receiving her diploma from her teachers Sueann and Tahlia Earlier this week, I attended a Case Conference with the administrators of Ava's new school where she will be attending Kindergarten this September. At this meeting, it was determined what supports Ava will receive at her new mainstream school. She will receive a Soundfield ystem, weekly intervention with her d/hh itinerant teacher, in-service for the staff on cochlear implants, her classroom will have the appropriate modifications made to reduce background noise such as hush ups on the chairs. Her existing IEP will be carried through to the new chool and adjusted in the fall. While her articulation is improving, it is still not quite age-appropriate in terms of when she is speaking in sentences. There is still work ahead of us in making sure she continues to progress with her language and not fall behind. We will miss having her weekly TOD visits which were chock full of therapy. In fact I plan to make an appointment with her auditory verbal therapist to have an assessment done to see exactly where she is at and from this arm ourselves with some goals to work on for the summer. With our deaf kiddos, we always have to be on top of things and work ahead whenever possible as it is so easy for them to fall behind at school. Attached is a video clip of Ava reading some words. Posted by Amy at 8:52 PM No comments: Older Posts Home Subscribe to: Posts (Atom) Welcome! Ava was born June 30, 2008 and diagnosed with profound bilateral ensorineural hearing loss in September, 2008. She received imultaneous bilateral cochlear implants when she was 9 months old on March 31, 2009. Today she is 6 years old and is on par with her hearing peers of in terms of auditory comprehension and expressive language. I want to give parents of newly diagnosed babies with profound hearing loss HOPE. About Me My Photo Amy I am married to a talented children's musician husband and together we enjoy seven unique and beautiful children. I "retired" as a corporate/commercial law clerk to stay at home with the kids. I love golf, gourmet cooking, jazz and ballet dancing and dates with my husband. View my complete profile Some Pictures Favourite Links hearing Cochlear Implant Accessories Ava's Spoken Words and Approximations One Month Hearing "Hi" - 05/09 "Uh-Oh" - 05/09 "uh" (up) - 05/09 Six Weeks Hearing "mamama & rarara" babbling "ah un" (all done) "Moo" Two months Hearing "or" (more) "bah bah" (for the sheep) tongue clicking (for the horse) bye bye "bah boo" (for daddy) ma ma (for mommy) Four Months Hearing poo poo (with the "p" sound too!) "ea ee" (ready) up apple eye Five Months Hearing (all approximations except Boo Boo) bread head flower Boo Boo (her teddy bear's name) meow ock milk don't touch (two words together!) ice cream Six months plus hearing hat down Elmo daddy no nose cheese yogurt tick tock boo (for blue) hair grandma purpo (purple) een (for green) eh wo (yellow) Questions: "Where's ________" (insert common object) "What Happened?" (with such feeling too!) Names of all siblings Body parts: eyes, ears, toes, nose, elbow, legs, arms, knees, neck, teef (teeth) cereal poon (spoon) pants diaper hoes boots mittens coat brush teef "want ______ (insert object) cracker keekee (cookie) Ava's Comrades AJ's Awesome Adventure Her First Year 1 week ago Good but Hard twinkle twinkle 4 weeks ago Jazzie and Tahlia More backtracking 3 months ago Lone Star Family Kendall's new Bling 8 months ago OUR JOURNEY and he's grown ... 10 months ago Turn On My Ears! 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Search ____________________ Search Recommended Readings Audiology) Jace Wolfe: Programming Cochlear Implants (Core Clincal Concepts in and Talking, Birth to Six Elizabeth Cole: Children with Hearing Loss: Developing Listening Intervention Toolbox Karen Rossi: Learn to Talk Around the Clock: A Professional's Early Shop Amazon IFRAME: http://rcm.amazon.com/e/cm?t=ardingercom-20&o=1&p=20&l=ur1&category =baby&banner=0EF6BQG917RFSJ55BV02&f=ifr =toysandgames&banner=0BHB9RAH86K172CMENR2&f=ifr Nebraska Hearing Resources/Info National Hearing Resources and Orgs Fav CI kid blogs Feedjit Live Blog Stats Cochlear Implants January 10, 2016 CIs in Noise: SNR loss Lily just finished her semi-annual visit to the audiologist. We arrived with what turned out to be a broken headpiece, and fortunately, were able to order a new one for delivery the next day. The headpiece had been cutting in and out for the previous few days and created a number of difficult listening situations with just one side. With a loaner headpiece, Lily went into the booth for tests. In quiet, Lily does very well. Tonight, Lily was asking if she hears as well as a "typically" hearing person. When we said yes, pretty much, she was quite proud. However, noise continues to be a challenge. Especially when the noise is variable. At the audiologist, Lily took an interesting test - BKB-SIN. The BKB-SIN is a speech-in-noise test that uses BKB (Bamford-Kowal-Bench) entences, recorded in four-talker babble. The BKB-SIN can be used to estimate SNR loss in children. Lily's results were as follows. Essentially, it says for Lily to get 50% accuracy, the signal has to be at least +9db above the noise floor or +11.5 db more than a normally hearing person (in a bilateral hearing situation). BKB-SIN Right CI only SNR for 50% correct: SNR loss re: normal Left CI only Bilateral CI’s 17 dB 12 dB 11.5 dB An individual with normal hearing sensitivity would be expected to core 50% correct at a signal to noise ratio of -2.5 dB. The SNR loss is the difference between the signal to noise ratio at which Lily cored 50% correct and -2.5 dB. Lily's Mom at 05:08 PM | Permalink | Comments (0) Reblog (0) | | http://platform.twitter.com/widgets/tweet_button.html?url=http://arding er.typepad.com/bliss/2016/01/cis-in-noise-snr-loss.html&text=CIs in Noise: SNR loss&count=horizontal October 16, 2015 Hearing First - Impressive new LSL resource Hearing First is an impressive new resource that presents the various aspects of a Listening and Spoken Language (LSL) approach. http://www.hearingfirst.org Through a variety of informational resources, families and professionals can use this site to learn about strategies used to improve outcomes when teaching children with hearing loss to talk and listen. Lily's Mom at 08:57 PM | Permalink | Comments (0) er.typepad.com/bliss/2015/10/hearing-first-impressive-new-lsl-resource. html&text=Hearing First - Impressive new LSL resource&count=horizontal September 30, 2015 Language-rich preschool for Bodie Lily's brother Bodie has just started his second semester of preschool. We selected a language-rich preschool run by a woman who was trained as a hearing resource teacher and who continues to serve kids with hearing loss. Of course Bodie knows all about the FM that the teacher wears. We love the intentional teaching and targeted language incorporated into the lessons. Teachers trained with a strong listening and spoken language (LSLS) focus for kids with hearing loss are able to extend those incredible skills to improve the language of all kids. Bodie already has an impressive vocabulary and doesn't stop talking. Takes after his sister! Who would have ever predicted that! IMG_8897 Lily's Mom at 06:53 AM | Permalink | Comments (0) er.typepad.com/bliss/2015/09/language-rich-preschool-for-bodie.html&tex t=Language-rich preschool for Bodie&count=horizontal August 21, 2015 IEP Goal for Third Grade and Lily update Lily's just finished her second week of third grade. It's hard to believe. When she was born the days were so long. Now the days fly by and Lily is growing into a "pre-teen." She's continues to be at the top of her class and gets to sit next to her best friend. Lily loves reading and she pours through books as fast as we can check them out. She is still doing gymnastics and will be starting Girl Scouts and Destination Imagination soon. Here's Lily's new big IEP goal that covers many topics. Goal: During discussion of challenging listening or social situations, Lily will use problem solving steps to increase her independence from a baseline of 6 points to 15 points out of 16 point rubric on elf-advocacy rubric. This year, Lily has a new hearing resource teacher who I think will be great. Lots of energy, passion and high expectations for kids with hearing loss. She will check in with Lily for 20 mins a week (3x per month), either in or out of the classroom. Lily's new third grade teacher seems terrific. She's expressed her openness to learn/collaborate about hearing and said Lily has been helping her remember the FM and captions. She is also pregnant, so hopefully will put all the supports in place with a substitute when he's gone. All great things. Both teachers have indicated things are going well. Lily continues to wear an FM and her school classrooms all use sound fields. We are also experimenting with a Dynamic, connected to the ound field, inside the classroom and the lunchroom. Other issues we identified on the IEP that continue to be a focus: topic, one person talking at a time, clarification strategies consistently greetings, developing best friends) ocial situations trying to hear better. Another area we have started to focus on is CC or closed captions. When dealing with videos or TV, captions help significantly in understanding the content and have helped Lily to become a super reader. Captions move fast and so your reading practice and speed have to match. They fill in all those words you didn't even know you missed. This week when Lily's teacher turned on a Kahn Academy video in the classroom, the captions were in Czech. Eventually we figured out how to translate them back into English. It's all such amazing technology. We just have to stay on top of the various components to make sure they are working seamlessly. Lily's Mom at 09:20 AM | Permalink | Comments (0) er.typepad.com/bliss/2015/08/iep-goals-third-grade.html&text=IEP Goal for Third Grade and Lily update&count=horizontal January 25, 2015 Hearing Resources Three great hearing resources for families with kids with hearing loss. Jane Madell - A list of PDFs and videos on a variety of hearing related ubjects. I especially like this video showing how to use an FM in the classroom. Success for Kids with Hearing Loss - Karen Anderson has a fresh approach and highlights many interesting tools and resources. As Lily gets older, I'm interested in learning more about Interact-AS a school peech-to-text captioning device. American Cochlear Implant Alliance - View materials from their plenary and special sessions at their recent conference. Lily's Mom at 02:36 PM | Permalink | Comments (0) http://platform.twitter.com/widgets/tweet_button.html?url=http://bit.ly /1CHLvop&text=Hearing Resources&count=horizontal January 13, 2015 Flower Girl Experience A few months ago, Lily got to live out one of her bucket list dreams of being a flower girl for our friends' wedding. It was a beautiful night with an equally fantastic flower girl dress to match. Lily stayed on her best behavior, walked down the aisle on cue and danced the night away. The only challenge came when trying to communicate in a big converted warehouse that had been transformed into a wedding reception environment. Lily occasionally looks to me as her "oral translator" in noise and unless we explain or point out Lily's hearing loss, it often goes unnoticed. However this night, one of the guests asked why I was repeating everything they said...weren't they speaking English? I had Lily explain that she uses CIs to hear and that noise was often challenging. It was a great learning moment. IMG_5165 IMG_6090 Lily's Mom at 06:54 AM | Permalink | Comments (0) /1wTZ2TP&text=Flower Girl Experience&count=horizontal January 12, 2015 Speech Perception Testing - The Challenge of Noise We recently went for Lily's six-month CI tune up with her audiologist. The two hour appointment goes quickly, however this time we were able to do some speech perception testing and examine what happens to Lily's listening abilities when she uses the FM system. HINT Sentences in quiet: 97% HINT Sentences in noise (+5 dB signal-to-noise ratio): 71% HINT sentence materials are at about a 1^st or 2^nd grade reading level, so one might compare her performance on this test to listening to material that is routine or familiar. A signal-to-noise ratio of +5 dB is not especially uncommon in a typical classroom and noise levels can often be even higher than this. AZ Bio Sentences in quiet: 84% AZ Bio Sentences in noise (+5 dB signal-to-noise ratio): 42% AZ Bio Sentences in noise (+5 dB signal-to-noise ratio) with FM in use: 91% AZ Bio sentence materials are at about a 6^th grade reading level according to some lectures. It would be appropriate to use Lily’s performance on this as analogous to listening to material that is unfamiliar or that is new information/vocabulary. We continue to search for better technology to help Lily hear in noise, especially when it is in a multi-talker environment like the lunchroom or during small group discussion. Lily's Mom at 06:38 AM | Permalink | Comments (0) /1xgguAP&text=Speech Perception Testing - The Challenge of Noise&count=horizontal January 11, 2015 Breaking out the Harmonies Over the winter break Lily discovered and announced she wanted to break out her Advanced Bionics Harmony BTEs and wear them at home. We received the Harmonies when Lily was first implanted, but have never activated them, because Lily has always prefered the Body Worns and done extremely well with them. The Harmonies give Lily hearing in the middle of her ear with the T-mics and enable her to slip the CIs on quickly in the morning. Lily ays the only difference between the sound of the BTEs and Neptunes is that she can hear herself chewing and her voice is louder. However, he does not like how they fall off when she is upside down. And she is upside down a lot! :) Lily also decided to change her standard Neptune headpieces from beige to pink to make sure kids at school saw them. The first day after winter break she said excitedly that everyone asked if she had gotten new CIs for Christmas. A few months ago, LIly declared that she never wanted BTEs. Perhaps now when AB releases a new processor in 2016???, we'll be the first in line. Lily's Mom at 03:36 PM | Permalink | Comments (0) /1w91vs8&text=Breaking out the Harmonies&count=horizontal October 09, 2014 Listen to Lily's hopes and dreams - Second grade Though this recording, you can listen to Lily's hopes and dreams, in her own words, as she starts her second grade year. Love that her hopes and dreams include inventing a static proof cochlear implant and to become a cochlear implant designer. Hopefully Advanced Bionics will have a job for her in 20 or so years. Not sure if that stint is before or after fashion designer and doctor, which she ususally specifies is a Pediatrician and ENT. She has plans to practice both specialties, every other day, when she is not teaching or being a Mom. My (Lily's) hopes and dreams are…. pushing Lily's Mom at 11:25 PM | Permalink | Comments (0) /1sqUl5C&text=Listen to Lily's hopes and dreams - Second grade&count=horizontal August 31, 2014 IEP Goals - Second Grade I share Lily's ongoing IEP goals to help other families in their hearing journeys. In IEP meetings, parents are always asked, "What do you want your child's goals to be?" Especially in the early years, it's extremely difficult to know what is possible, what can help my child, or what hould be without spending hours researching and contacting outside professionals for guidance. I hope by sharing our story, other families with similar journeys can use these goals as a starting place. Each goal below has a complex matrix to measure progress. Goals: 1. Contribute to discussions without dominating, accept topic of others by adding relevant information to the conversation and ask for clarification or for confirmation if not sure of what was said. 2. Given various coping strategies, Lily will have a conversation with her peers on the playground and in the lunchroom. (These are noisy difficult listening environments) 3. Improve her ability to advocate for herself by increasing her vocabulary and understanding of the functions of the parts of her CI and FM, her responsibility for monitoring her CI and FM system and by communicating her needs with her teachers. Lily's Mom at 05:25 PM | Permalink | Comments (0) /1phAoaK&text=IEP Goals - Second Grade&count=horizontal August 29, 2014 Softball and Horseback riding Lily had a number of new sport experiences this summer including oftball and horseback riding. In softball, Lily liked hitting the best and was very good at it, but thought fielding was a bit boring. She likes action. It was fun to ee her progression through the summer. Fortunately her primary coach was the husband of her first-grade teacher, so I'm sure he'd already received lots of lessons in hearing. :) We watched carefully how hearing impacted the game. Certainly Lily had to watch and listen to the coaches more carefully, and I'm not sure if he could always tell where the ball was hit or caught based on the ound of the bat or ball hitting the gloves. Such small sounds in such large spaces. We didn't use the FM for softball, but if this was the pros, we'd definitely consider it. Photo 2 IMG_4957 Horseback riding was a a wonderful experience as well. Lily was ready to be "unleashed" on day two, although the teachers had other ideas. The riding was slow and gentle, with lots of confidence building time. While the farm was fairly quiet, it was challenging for me to educate the young teachers on the fly. On the last day, one of the Moms of the other students came over to me and said I see Lily has Cochlear Implants. Instantly I wondered what her connection with the "hearing" world was. She pulled her hair back and said, "I have one too. I was implanted after college and have had it about 15 years." While I was amazed, Lily thought it was only mildly interesting. Having CIs doesn't seem that unusual to her. Lily's Mom at 01:44 PM | Permalink | Comments (0) /Z0EVcL&text=Softball and Horseback riding&count=horizontal August 26, 2014 Reading upside-down Lily commonly reads upside down. She and the book are totally flipped over while her legs wave around in in the air. Not sure what it means or if there is any research around something like brain stimulation when reading. Maybe this could be Aunt Kelly's new reading research focus??? Lily continues to devour books and grow in her literacy skills. We check out bags of books, instead of just a few, because they don't last very long. With all this time spent upside down and flipping around, Lily is now enrolled in gymnastics. We briefed her teachers on tips for communicating, but parents sit behind a glass window in one corner of the gym, so I'm not sure how much she is actually hearing or missing. The gym is a very challenging listening environment. However, even with the difficulties hearing, Lily is loving the experience. Her Neptunes make a little bump under her leotard, but don't seem to give her much inconvenience. The headpieces stay on well in their ponytail setup, even when she's spinning around and around and around. No limitations for this kid! IMG_5147 Lily's Mom at 06:30 AM | Permalink | Comments (0) /1pBR2XM&text=Reading upside-down&count=horizontal August 25, 2014 Second Grade Second grade seems to be going well. We had a "pre-meeting" the day before school started with all the second grade teachers and new staff at the school. This was in addition to the regular IEP team transition meeting which also had new faces like a new SLP and Assistant Principal. It reminded me of the critical need of training and re-training teachers to maximize the educational experience for our kids. The new SLP, who was just out of graduate school, told me that she's already met Lily. Then she adds that as a student she attended our local parent group meeting Amplify, where we have SLP students "babysit" and she was able to meet kids with CIs. Feels like a small uccess that this may have been her exposure to kids with CIs. IMG_5120 Lily's Mom at 09:38 AM | Permalink | Comments (0) /1olaanB&text=Second Grade&count=horizontal July 16, 2014 Video - School Poetry performance Lily reads her poem about bubbles during a first-grade poetry celebration. IFRAME: //www.youtube.com/embed/c74STtp92h8 Lily's Mom at 06:46 AM | Permalink | Comments (0) /1wulZMQ&text=Video - School Poetry performance&count=horizontal July 15, 2014 Hearing Research - Lily's contribution Lily and her "hearing enabled" colleagues are on the forefront of a generation of kids who are able to maximize technology to hear. Because of this, we believe it's important to participate in hearing research whenever possible. We do it both to benefit Lily's future and the families that will walk in our path. Over Lily's lifetime we've done a half-dozen studies on language learning and listening. This summer, Lily will add two more to her research resume. One study earlier this summer involved a research van coming to our home. Lily completed numerous listening and language tasks, in the van, to help the University of Iowa understand how kids with hearing loss are learning language, compared to their typically hearing peers. The next study will be at Boystown in a few weeks which involves telelearning or telemedicine. Boystown is studying if providing audiology services for children on-line is as effective as in person mapping. Here's an Interesting article describing Boystown's future hearing research focus. IMG_4867 Lily's Mom at 06:35 AM | Permalink | Comments (0) /W6yFi0&text=Hearing Research - Lily's contribution&count=horizontal July 14, 2014 We entered Phonak's recent #HearIam contest with cute photos of Lily and her Phonak Inspiro FM system. The prize is a new Phonak Roger Pen, which is a microphone cleverly disguised as a writing pen. Very cool! IMG_4934 Lily's Mom at 11:35 AM | Permalink | Comments (0) /W43nIG&text=#HearIam Phonak contest&count=horizontal June 23, 2014 Hearing Our Way Magazine Interesting new magazine called Hearing Our Way for children and teens with hearing loss. Subscribe on the website to get a free subscription mailed to you today. Hearing Our Way is an educational magazine for children and teens with hearing loss designed with language, listening, self-advocacy, and cognitive skills in mind. Independent readers will enjoy the magazine on their own, though students of all ages and reading levels can benefit from using the magazine as a classroom reader guided by a teacher or parent. Articles and features are great discussion starters, and content can be easily implemented into current curriculum, IEP goals, and Common Core standards. Lily's Mom at 11:30 PM | Permalink | Comments (0) /1jakQnR&text=Hearing Our Way Magazine&count=horizontal May 21, 2014 Huskers' Spring Game Lily and Bodie experienced their first Husker Red/White spring game. Feels a little like Where's Waldo. Can you find them on the field? While the sound system in the stadium was really loud, it often times wasn't that clear. Announcements, calls and music should have been captioned for those who are deaf or hard of hearing. Some sports stadiums are moving to IPads where people can follow the captioned action, but I hope that progressive stadiums will figure out Jumbrotron captioning before they are legally required to. IMG_4518 Lily's Mom at 06:17 AM | Permalink | Comments (0) /1oRqOQW&text=Huskers' Spring Game&count=horizontal May 19, 2014 Hawaii Adventure We took a pretty awesome trip to Hawaii in March, to celebrate my parents' 50th wedding anniversary. I'm not sure why it took us so many years to get to Hawaii, of all the places we've traveled to in the world, but the experience was very memorable for all of us. Bodie asks daily if we can go back to the pirate ship pool, while Lily often recreates the luau in her grass skirt. Exposure to a new culture and a variety of new words like Mahalo, Ohanu, Aloha and whale breaching were amazing, as were the beautiful unsets and time with family. Not sure what we would have done without Lily's waterproof Neptune processors. We were in the pool, ocean or the rain everyday. We're currently searching for a yellow hardy hibiscus, Hawaii's state flower, and now understand the theme of Trader Joe's much better. Need to find an excuse to get back to the other islands, or maybe just revisit Maui and Honolulu. We took hundreds of pictures and are currently working to get the photos down to a manageable number. Just posting a few here to capture the Aloha spirit, to thank my parents for a wonderful trip and to preserve an amazing experience. IMG_3931 IMG_3931 IMG_3931 Lily's Mom at 06:18 AM | Permalink | Comments (0) /1nYtZWQ&text=Hawaii Adventure&count=horizontal May 18, 2014 Metal Slide Journey Lily slide Metal slide It's been a huge week. After two years of requests, Lily and the other kids with cochlear implants at her school, can now go down one metal lide without fear of damaging their electronic hearing equipment from electrostatic discharge. It's a dream come true. The slide is very fast and very popular with all the kids. Lily says the slide is a "madhouse." Building new vocabulary is just another advantage. We celebrated the slide's accessibility, our donors and supporters with a ribbon breaking, speeches and cookies. The school's leadership has been so supportive. Many of the families were there to watch with amazement when the kids' hair didn't stand on end as they sailed down the slide. Having a metal slide makes it a little easier to breathe knowing our kids have one less barrier and risk to hearing. I was proud to work with the other CI families to help to begin to make our school's playground accessible for all kids. This journey has moved the school's PTO to invest in "inclusive" playground equipment going forward. In fact, another new piece of equipment is going in this week. I was thrilled to hear that other parents thought that all kids, no matter the ability or disability, should be able to access the playground and not just be able to get on the rubber surrounding the playground. While the two-year-old equipment was ADA accessible, it wasn't inclusive. With kids of varying abilities served in mainstream classrooms, it seems playgrounds are an area that needs to be given another look. Lily's Mom at 04:14 PM | Permalink | Comments (0) /1nX2Cg2&text=Metal Slide Journey&count=horizontal April 14, 2014 Dale Sindell at TEDxCibeles As a big TEDx fan, I found this talk by Dale Sindell of TEDXCibeles in Madrid fascinating. (TEDx speakers page) Dale started losing her hearing at age 19. After graduating from college, she moved back to Spain, got married and soon lost the rest of her hearing. Somehow she continued to work in a variety of career roles and then had children, which resulted in her youngest child being diagnosed with hearing loss. At that point Dale founded t-oigo.com, a non-profit virtual community which provides information in Spanish for people with hearing loss. Today 30,000 users follow her site each month. She's also an advocate for bilingual education - Spanish and English for kids with hearing loss. Such an inspiration. IFRAME: //www.youtube.com/embed/HdlYB9voeMQ?rel=0 Lily's Mom at 10:42 PM | Permalink | Comments (0) /1t32ewX&text=Dale Sindell at TEDxCibeles &count=horizontal April 06, 2014 Science Fair: Social Contagion LIly's second elementary science fair experience was a success. She tudied Social Contagion, the idea that if we observe people who are tired, sad or bored, we become tired and start yawning. The same is true when we study people who are happy and laughing. We feel happy and start smiling with those we observe. Of course it didn't take much encouragement for Lily to develop a video of herself acting out both roles. Next year we hope to complete a cochlear implant or acoustics study, but this year we didn't find the right approach for a first grader. Backwards engineering or reprogramming her CI seemed a little daunting. Last year's project measured the noise in her school (there's a lot of it!!). Let us know if you have any great ideas for a science fair project we could attempt. IMG_3169 Lily's Mom at 06:12 PM | Permalink | Comments (0) /1hvX7vT&text=Science Fair: Social Contagion&count=horizontal February 25, 2014 Bilateral vs Unilateral CIs in Children Interesting study from Ear and Hearing of Spoken Language Outcomes in children with unilateral versus bilateral cochlear implants. Children with bilateral CIs achieved significantly better vocabulary outcomes, and 8-year-old children with bilateral CIs had significantly better language outcomes than did children with unilateral CIs....The outcomes were also significantly predicted by a number of factors related to parenting, child characteristics, and family background. When Lily was implanted six years ago, the big debate was one or two implants. Our sense was that she had two ears, so she should have two implants right away. There was very little research about the benefits of two implants at the time. Many families were debating about "saving one ear for future technology." I don't hear that phrase today. Two implants seem like a standard practice. Lily's Mom at 11:27 PM | Permalink | Comments (0) /1hR8Mft&text=Bilateral vs Unilateral CIs in Children&count=horizontal February 19, 2014 Do chickens hold the key for hearing loss Chickens have the amazing ability to restore their own hearing, and this trait inspired the Hearing Health Foundation to seek a cure for hearing loss in humans. I knew there was a reason we got chickens! Check out this interesting article on the research and the Hearing Health Foundation's chicken video. Curing hearing loss in 10 years? Maybe? Image 1 Lily's Mom at 09:16 PM | Permalink | Comments (0) /MCjvwl&text=Do chickens hold the key for hearing loss &count=horizontal February 10, 2014 Early Cochlear Implant Switch-On Interesting research summary on the Safety and Functional Results of Early Cochlear Implant Switch-On in Children. That means instead of waiting for four weeks before they switched the implant on, they only waited for one week. Even five years ago, Lily's implant center only waited 10 days. "This is the first study investigating the safety and the effects of an early cochlear implant switch-on in children. Results show that such a procedure is well tolerated by pediatric subjects and free from complications. Impedance measurements suggest that the earlier witched-on subjects benefit of lower and more stable impedances than ubjects undergoing 1-month switch-on." Lily's Mom at 06:50 AM | Permalink | Comments (0) /1h3BrO1&text=Early Cochlear Implant Switch-On &count=horizontal February 09, 2014 Cochlear Implant with no external hardware Fascinating article on the future of cochlear implants. Researchers have developed a new, low-power signal-processing chip, which sits in the middle ear, that could lead to a cochlear implant with no external hardware. The implant would be wirelessly recharged and would run for about eight hours on each charge. Lily's Mom at 08:24 PM | Permalink | Comments (0) /M3s3fe&text=Cochlear Implant with no external hardware&count=horizontal January 31, 2014 Cecilia - A little girl who changed our lives The night before Lily's implantation we watched a marketing video from Advanced Bionics about a little girl named Cecilia who received a cochlear implant around the age of two. She was independent, confident, talking, seemed really smart and had great parents. We loved her and always wondered what happened to Cecilia? This was a little girl who helped us believe Lily's CIs were going to work. I had an update a few years ago from Mary Koch, her therapist in the video, and then tonight I stumbled upon this jewel. An update video. Today Cecilia is at the top of her class and an accomplished athlete. She's getting ready for college. Celilia said she couldn't imagine a life without sound. What a great way to end the day. Check out the Alfred Mann Foundation (http://aemf.org/) and scroll to the bottom of the first page for the video. Lily's Mom at 06:12 AM | Permalink | Comments (2) /1cCgFkA&text=Cecilia - A little girl who changed our lives&count=horizontal January 30, 2014 Lily's quoted in the newspaper Reading the morning paper, I saw a story about Lily's elementary school and a new local food program. Half way through the article I read, "First-grader Lily sat in the elementary lunchroom, bit into the day's barbecue-coated lesson and summed up her experience with a single word: Delicious." The reporter was directed to Lily because the Vice Principal knew Lily would have something positive to say. HA! Lily now thinks she is famous and wonders when Bodie will be the newspaper. Just another amazing day! Lily's Mom at 06:26 AM | Permalink | Comments (0) /1npkeid&text=Lily's quoted in the newspaper&count=horizontal January 16, 2014 Gene therapy to improve cochlear implants? Facinating article on new research that has investigated the possibility of using gene therapy to prevent the death of nerve cells in the inner ear in people with certain types of progressive hearing loss. Lily's Mom at 03:07 PM | Permalink | Comments (0) /1dUGt7Z&text=Gene therapy to improve cochlear implants?&count=horizontal January 14, 2014 Family uses media effectively to gain cochlear implant coverage Great story of a family overcoming an insurance denial by Conventry for Cochlear Implant coverage. He even received Advanced Bionics. http://news.yahoo.com/video/life-changing-ear-operation-helps-230943724 .html?format=embed&player_autoplay=false Lily's Mom at 06:29 AM | Permalink | Comments (0) /1iNi6hf&text=Family uses media effectively to gain cochlear implant coverage&count=horizontal January 12, 2014 CI Wear Shirts Love the innovation of the family who created CIWear, an active wear hirt with pockets for cochlear implants and other electronic devices. Where to put the Neptune processors is a challenge that adults and children face. Especially in the pool, ocean or even during a basketball game, CI users want the processors to be secure and the cords to stay close. While swimming in a pool, we clip Lily's CIs on her sleeve then run the cords up through her shirt. This new active shirt design looks even more secure. Now if it only came in pink! Lily's Mom at 10:47 PM | Permalink | Comments (1) /1hNADMu&text=CI Wear Shirts&count=horizontal December 30, 2013 Little Free Libraries Over the holiday break we've hit a few of Lincoln's newest Little Free Libraries, a library craze happening all over the country. Their theme is "Take a book, leave a book." It was quite an adventure finding the libraries, discovering what was inside and then convincing Lily it was alright to take a book at each top. She had them all read by the next day so we'll have to make another journey to return a few books in their place. By January 2014, thre are supposed to be 10,000 Little Free Libraries all over the country. IMG_3286 Lily's Mom at 11:11 PM | Permalink | Comments (0) /Kgy1sJ&text=Little Free Libraries&count=horizontal December 26, 2013 The greatest museum ever! Exploratorium - San Francisco We journeyed to San Francisco for a quick trip in December. While we've been to San Francisco a number of times before, we had never been to the Exploritorium. It's been open for 50 years, but just recently reopened on Pier 15. WOW! I thought it was the best museum that we'd ever been to. That includes children's museums, science museums, and Smithsonian's all over the world. The creators captured the balance perfectly between engagement and education, art and science. There was even a large exhibit on Harold Edgerton, a Nebraska native who invented the strobe light. Years and years of school science fair experiments in front of us. We finished the day by riding a cable car ride which Lily insisted we try. IMG_2994 Image 7 IMG_2994 IMG_3051 IMG_3051 IMG_3060 Image 2 IMG_3104 IMG_3106 Image 10 IMG_3106 IMG_3118 Lily's Mom at 06:33 AM | Permalink | Comments (0) /1jLdN9V&text=The greatest museum ever! Exploratorium - San Francisco&count=horizontal December 25, 2013 Merry Christmas from Lily's family Merry Christmas to all our blog readers. We hope the information and inspiration we provide on this blog is helpful to you. We've loved hearing from people around the world about their own hearing journeys. It's certainly been a fun five plus years of documenting Lily's hearing journey and beyond. Someday Lily will read this and be able see the journey she helped so many take with her. Life today is bliss. IMG_2792 2 Lily's Mom at 06:50 AM | Permalink | Comments (3) /1g0R58U&text=Merry Christmas from Lily's family&count=horizontal December 24, 2013 Lily's Card Shop IMG_2981 Sharing a entrepreneurial spirit with her Dad, Lily describes her card hop. IFRAME: //www.youtube.com/embed/YQ8xBvRJzjc?rel=0 Lily's Mom at 06:18 AM | Permalink | Comments (0) | TrackBack (0) /19ngWsu&text=Lily's Card Shop&count=horizontal December 23, 2013 Santa Claus visit A great trip to see Santa today. Lily is asking lots of questions like why don't all the Santas look the same? How is it possible for Santa to get all over the world in one night? Shouldn't he be working on toys, instead of talking with children all day? We've been ringing the Christmas bells and asking Lily if she can hear them. She always says, "Yes I can hear them. I believe!" (even when the bells aren't ringing). Smart little kid! Photo copy 5 Lily's Mom at 06:25 AM | Permalink | Comments (1) /1idxyFx&text=Santa Claus visit&count=horizontal December 22, 2013 Therapy via IPads for children with cochlear implants Great story on using IPads for teletherapy in a program called BabyTalk. For newly implanted children under three, this program helps babies in Northern California learn how to listen and speak. It's a partnership between Stanford School of Medicine and Jean Weingarten Peninsula Oral School. Lucile is one of about 17 other hearing-impaired toddlers from across Northern California — from Salinas to the Oregon border — to participate in a new "teletherapy" program called BabyTalk, a collaboration between the Stanford School of Medicine's Department of Otolaryngology and the Jean Weingarten Peninsula Oral School for the Deaf in Redwood City. - See more at: http://med.stanford.edu/ism/2013/december/babytalk-1209.html#sthash.OYD ThTLM.dpuf Lily's Mom at 06:47 AM | Permalink | Comments (0) /19kk20n&text=Therapy via IPads for children with cochlear implants&count=horizontal December 20, 2013 Genetics of Auditory Disorders Very interesting and descriptive article on the Genetics of Auditory Disorders Lily's Mom at 10:47 PM | Permalink | Comments (0) /1i96UNS&text=Genetics of Auditory Disorders&count=horizontal December 03, 2013 Barriers for children with hearing loss K-12 in the classroom New report released by the Laurent Clerc National Deaf Education Center at Gallaudet University to describe the barriers that children with hearing loss aged birth to 21 face in the classroom and with school administration. Lily's Mom at 06:39 AM | Permalink | Comments (0) /18jiw8n&text=Barriers for children with hearing loss K-12 in the classroom&count=horizontal December 02, 2013 Long-term improvements in oral communication and peer relations in children with CIs: parental testimony New study out of Penn State showing long-term positive outcomes of cochlear implantation. The research shows that on average, children improve in oral communication skills and have better peer relationships years after implantation, rather than immediately after. Even implant recipients who performed poorly several years after the procedure continue to improve....What helps deaf adolescents cope in middle school? The findings of their study suggest that deaf children should be supported in their early development to build healthy levels of self-esteem and confidence. The degree to which implanted children are accepted by mainstream schools – whether they are understood by their teachers and peers – can also help improve their peer relationships. Lily's Mom at 06:19 AM | Permalink | Comments (0) /1hsN8wy&text=Long-term improvements in oral communication and peer relations in children with CIs: parental testimony&count=horizontal November 30, 2013 Supporting Success for Children with Hearing Loss Supporting Success for Children with Hearing Loss is a great new resource filled with information about the learning and social issues of children with hearing loss and what you can do to better support the future success of these children. Resources are at no cost, designed to be easy to understand quickly, and practical to use. Lily's Mom at 09:53 PM | Permalink | Comments (0) /18ew1q6&text=Supporting Success for Children with Hearing Loss&count=horizontal November 06, 2013 Study: Hearing preservation Interesting study on Hearing preservation for Cochlear Implant outcomes. http://www.audiologyonline.com/articles/effects-hearing-preservation-fo r-cochlear-12078 Lily's Mom at 06:31 AM | Permalink | Comments (0) /1b8uWCf&text=Study: Hearing preservation&count=horizontal November 05, 2013 New device helps understand how brain processes info from a CI A new imaging device was launched on campus today, helping researchers in the ARC Centre of Excellence in Cognition and its Disorders (CCD) and HEARing Cooperative Research Centre (CRC) better understand how the human brain processes information from a cochlear implant. For the first time, scientists can use a well-established brain imaging technique called MEG, or magnetoencephalography, to measure brain function in recipients of cochlear implants, including young children. The new device overcomes the electromagnetic restrictions of cochlear implants, enabling researchers to gain valuable insight into this established and effective solution for people with hearing loss. More Lily's Mom at 06:16 AM | Permalink | Comments (0) /17JMfdW&text=New device helps understand how brain processes info from a CI&count=horizontal November 03, 2013 A purpose? We found it! I haven't posted forever, but think I'm coming up for air now. I ran across this post on a blog which I've followed for a number of years and thought it perfectly captured how I'm feeling now. We met this family at AGBell last year. Just substitute Lily's name and I could have written it myself. However this Mom has boy triplets who are even-years-old (one of which has CIs and one with hearing aids) and one three-year-old girl with her own set of challenges. The family is amazing. When does she have time to blog? http://thelawrencetriplets.blogspot.com/2013/10/a-reason-purpose.html Her blog post is titled "A Reason, A purpose?" And I think it captures a big part of Lily and my purpose, at least right now. We've connected and mentored and been mentored by so many families around the world and in our hometown, many of who have become very close friends. And many who have gone on to mentor others. Which is amazingly cool. Families almost always thank us for giving them "hope" which is so desperately needed, especially in the early days. It seems everywhere I go, we are introduced to people with hearing loss or people with children with hearing loss. It may be fate or our network crossing, but it truly is some of the most satisfying work I do. Lily inspires them all. She too, like Cormac in the blog post, has a love of life and the ability to inspire others. She also has a great kill at listening and spoken language, something we've focused hard on ince she was two months old. It's paid off. She received all 4s, the highest grade in Language Arts, which is dreamy. Her reading test, after the first quarter of the first grade, placed her at the end of the third grade. She could read beyond this, but began to lose some comprehension. She also received 4s in "Confidence in Self" and "Singing," among others, which is pretty awesome. These are both areas which we have worried about for years. But I also see Lily's 22-month-old brother listening with ease, picking up words out of songs on the radio and speaking in four-plus word entences already. He probably knows more than 500 words. At the the ame point in Lily's life, she was not yet putting two words together, but she knew 200 words or so and we documented each one. That early childhood hearing matters. Lily's certainly caught up, but we certainly can't let up. Lily struggles hearing especially when it's noisy or kids have soft voices. I watch how much she misses when I volunteer in the classroom or when Lily is outside the school. It's tough. One Mom told us she used to tell her daughter with CIs, who is now in high school, just to run after the girls when they run, even though her daughter had no idea what game they were playing or why they were running because she couldn't always hear the conversations. The Mom aid the girls would make it very clear if they didn't want her daughter there. I think that was pretty good advice. :) Lily's Mom at 09:47 PM | Permalink | Comments (0) /1a1Z1UI&text=A purpose? We found it!&count=horizontal September 12, 2013 Cochlear Implant history and pioneers The 2013 Lasker~DeBakey Clinical Medical Research Award honors three cientists who developed the modern cochlear implant, a device that restores hearing to individuals with profound deafness. Through their vision, persistence, and innovation, Graeme M. Clark (Emeritus, University of Melbourne), Ingeborg Hochmair (MED-EL, Innsbruck), and Blake S. Wilson (Duke University) created an apparatus that has transformed the lives of hundreds of thousands of people. Their work has, for the first time, substantially restored a human sense with a medical intervention. Check out their incredible video interview of cochlear implant pioneers Graeme M. Clark, Ingeborg Hochmair and Blake S. Wilson and an extensive description of the history of the development of the cochlear implant. It's hard to believe the FDA only gave its inaugural approval to a multichannel cochlear implant in 1985 for treating adults who could hear before they went deaf. Lily's Mom at 06:04 AM | Permalink | Comments (0) /1e5w0vb&text=Cochlear Implant history and pioneers&count=horizontal September 11, 2013 Class presentation on cochlear implants and other fun stuff Lily and I have now given two presentations on hearing and cochlear implants at her school. The first was a presentation to her own class. We started by asking if there was anything different about Lily. One child said she had braids in her hair. Then another one aid she had strings on her back. Love it. Lily answered all their questions, showed off her Buddy/Melody and American Girl Doll with CIs, and tried to act out each point we made about Dos/Don'ts, FMs and how her CIs worked. The kids were most interested in the FM and radio waves, as well as the stuffed animals. Then one day after school a third grade teacher, who was instructing her class about sound, asked if we could come talk about Cochlear Implants and hearing. Her class had read a small piece about cochlear implants in their textbook and they were very interested in the ubject. This presentation was a little more complex with descriptions of the ear, why people have different types of hearing, how a CI works and then questions. Every child had their hand in the air and they asked dozens and dozens of terrific questions until the bell rang. They all aid that they had tubes or an ear infection at one point, so they could understand when someone was not hearing as well. A very compassionate bunch. Their questions ranged from how does a CI work to what happens if someone can't pay for an implant. We tried to inspire the students to become scientists, engineers or inventors that helped people. At the end of the presentation, Lily had taken her headpieces off to "demonstrate" so many times, that her batteries died. I'd left my purse in the car, which always has batteries in it, and Lily had left her backpack down the hall, which also has batteries in it. So....in a small panic...I looked around and saw remote controls in front of me. I began to open them up and in the second remote I found a AAA battery. I took it out, put it in Lily's CIs and crossed my fingers that it had enough power. It worked. The third graders cheered and clapped and thought it was very cool. The teacher said Lily may now have a third grade "fan club." LIly was perplexed by the comment, but soon was thrilled by the idea. Always a language opportunity. IMG_2192 Lily's Mom at 06:43 AM | Permalink | Comments (0) /17pKjWf&text=Class presentation on cochlear implants and other fun tuff&count=horizontal September 10, 2013 The Spa Experience Lily has been begging and pleading with me to get a "facial" ever since he read the sign "now offering facials" at the local nail place. The power of reading (and definitely more trouble for Mom and Dad). We're not sure about how her spa obsession happened months ago. We certainly don't visit many spas, but Lily has turned one of our bathrooms into her "spa." No one is to move any of the "spa accessories" which include cups, soaps, tooth brushes, lotions, hair brushes, curlers, pillows, hand towels, etc. Finally after weeks of stalling, I took Lily for a "junior facial" as he named it. I struck a deal with the facial lady and she did a modified facial that her daughters love. I felt a little bit ridiculous taking a six year old for a facial, but I have to say it was fabulous. There was warm steam, massage, lotions, exfoliation, rotating brushes, and soothing music. Again, a language experience. :) Lily did not move for 15 minutes. I kept making sure she was breathing. She loved it! The lady suggested I play soothing music for Lily to help her fall asleep. We didn't even go there or explain what Lily's CIs were. And we skipped the head massage. When it was my turn, Lily watched very carefully so she could learn how to provide this service in her own pa. This evening she gave Bodie her "signature facial." Good thing he is an easy going kid. IMG_2196 Lily's Mom at 06:22 AM | Permalink | Comments (0) /13FxOW2&text=The Spa Experience&count=horizontal September 03, 2013 Advanced Bionics releases new Naida CI, electrode and HiRes Optima Advanced Bionics has just introduced the Naída CI Q70 (Naída CI) processor, HiFocus™ Mid-Scala electrode, and HiRes™ Optima Sound Processing. With Naída CI, AB brings performance and wireless connectivity and now cochlear implant recipients have access to the combined technologies of AB & Phonak. Benefits of new Naida CI: • 55% improvement in speech understanding in noise when AB ClearVoice™* and Phonak UltraZoom features are used together • 100% wireless connectivity—streaming from consumer electronics by leading brands, including Apple, Samsung, and Nokia • All-new Binaural VoiceStream Technology™ designed for improved hearing in noise • Bimodal streaming—media can be streamed to a compatible Phonak hearing aid and a Naída CI sound processor at the same time! • 40% smaller than the previous behind-the-ear sound processor—incredibly lightweight for barely noticeable on and off-ear comfort • First-ever bilateral feature for easy use and peace of mind—each processor can be programmed for both ears so the best ear can still hear if a second processor is misplaced • Compatibility with AB performance innovations, including ClearVoice, AutoSound™, HiRes Fidelity 120™*, and HiRes Optima Sound Processing • All-new, discreet T-Mic™ 2 microphone In addition to the Naida CI Q70 Advanced Bionics has also recently received approval for the HiFocus Mid-Scala Electrode (designed to protect the delicate structures of the cochlea) and for HiRes Optima Sound Processing (which offers optimized battery life)! We are definitely going to get the HiRes Optima soon for Lily's Neptunes. It's another trip to the audiologist, but well worth such an increase in battery life. Currently, Lily's batteries will die around 4pm. She is starting extracurricular Spanish class this week that, you guessed it, ends around 4pm. So what should I do? Go to school and change the batteries between school and class? Ask the teacher to do it? Or get this HiRes Optima ASAP. We'll also be investigating the Naida CI which looks exciting, although we love her Neptunes. Lots of exciting new options to think about. Lily's Mom at 06:11 AM | Permalink | Comments (0) /19ewwSj&text=Advanced Bionics releases new Naida CI, electrode and HiRes Optima&count=horizontal September 01, 2013 CI Toolkit for parents and teachers Recently I received The Cochlear Implant School Toolkit which was funded by a Small Business Innovation Research Grant from the National Insitute on Deafness and other Communication Disorders for review. Included in the toolkit were: children’s schools, and themselves for their children’s entries into mainstream classrooms create peer acceptance and to smooth the integration of children with cochlear implants into mainstream classrooms teachers, and children examples for teaching a student with a cochlear implant, tips for creating an inclusive classroom, suggestions for classroom modifications, and testimonials from parents and teachers who have been through the mainstreaming process with a child with a cochlear implant. All of the pieces are well done and an impressive advisory panel guided the toolkit's development. The research-based teacher's toolkit should be standard reading for each teacher that has a child with a cochlear implant. The guide has been espeically useful for Lily's school. Lily's teacher is very willing and open to learning everything and anything we provide to her. It includes basics information such as learning about CIs and hearing loss, working as part of a TEAM, understanding challenges, etting up a classroom and refining and reporting your progress. It is easy and quick to read while providing tons of resource materials. The company that developed this toolkit is also working on The Cochlear Implant University which will support high school and college students with cochlear implants and their parents as the student transitions to higher education. The toolkit is a must read for all famlies and teachers who work with kids with Cochlear Implants. Lily's Mom at 10:10 PM | Permalink | Comments (0) /15wXSz8&text=CI Toolkit for parents and teachers&count=horizontal August 01, 2013 Cochlear Implant Balance Research Study We've participated in various cochlear implant research studies over the past five years because we feel it's important to give back and help advance the field. Last week, Lily was in a balance study at Boystown that was trying to determine if there was a connection between cochlear implantation and balance issues. The researchers asked Lily to walk, hop, stand on a balance board, spin around in the dark, do eye tests while shaking her head and twist her head for some kind of nerve measurement. We learned that Lily had great balance and eye sight. The physical therapist said that knowing she reads really well and can ride a bike without training wheels also indicates that there are no balance issues. All in a days work! Image 4 Lily's Mom at 06:09 AM | Permalink | Comments (1) /1edjTrA&text=Cochlear Implant Balance Research Study&count=horizontal Next » Lily's Latest Photos Become a Fan Enter your email address: ____________________ Subscribe Delivered by FeedBurner Subscribe in a reader Subscribe to this blog's feed Categories See More Archives More... CDC LInk Symptoms Widget CDC Hearing Loss Symptoms Widget. Flash Player 9 is required. CDC FASD Widget Flash Player 9 is required. Quantcast kip to main | skip to sidebar . New Year, New Outlook We are just getting started on Brinley's journey... Dec 2009 we got the diagnosis of profound bilateral hearing loss. English Terms: Brinley is deaf. I'll be documenting Brinley's progress every step of the way. This will be my outlet in getting my thoughts on paper (well, computer) and maybe you will get something out of this too. You will learn what it means to be deaf, possibly be inspired to pick up a few sign language books or next time you see a child with hearing aids or Cochlear Implants you will know what it took for that child to get where he/she is today. Modern technology is amazing! Brinleys Video's Loading... "HARD DOES NOT MEAN IMPOSSIBLE" Brinley Shay Reiswig Sisterhood If we only knew then what we know now... [EMBED] ALL SMILES WITH MY HEARING AIDS Mommy's Angel My Favorite Links Upcoming Appointments Jan 7th, Modesto 2:30pm Meeting with MCS/ SCOE Early Start Eval. Jan 15th, Oakland 9:00am Speech Therapist Apt 10:00am Family Psycologist Apt 2:30pm First Audiologist Apt with Sara 3:30pm Meeting Dr. Murray, Implant Surgeon Jan 29th, Oakland - Sedated CT Scan Stanford here we come! Feb 9th Meet Surgeon Dr. Blevins, get surgery date Monday March 29th, 5 hr Surgery at Stanford Activation 4/20 and 4/21 Follow up 5/17 and 5/18 Tuesday, January 14, 2014 Today's the day [brinstar.jpg] True definition of Rockstar. Years of speech,traveling and assessments have all brought us to this day. With a happy heart today is Brinley's last day at the Deaf and Hard of Hearing preschool. When we made the move to Socal last summer she was attending 5 days a week. She made quick progress. Before we knew it she dropped to 3 days a week at DHH. We enrolled her in our local CDC Full-Time Preschool the other 2 days. It's always been extremely important to us that Brinley gets her role modeling from "like hearing peers." Putting her in this environment was scary at first not knowing how she was going to juggle going to two different schools who had two very different set of rules. She flourished.And adjusted.And was happy. At the start of the new 2013 school year went switched it up again, 2 days at DHH and 3 days in mainstreamed preschool. [brinleyslastday.jpg] As parents we struggled with moving her from the DHH program, after all she's deaf. Her friends there either have cochlear implants or hearing aids so Brinley wouldn't be so different. It's safe. She felt safe.Or was it we felt safe as parents knowing she wouldn't be My last visit to her DHH class left me with questions. Brinley had taken on a motherly role to the other children. Her language had urpassed her other classmates so she evolved into a helper for the maller children. The classmates were using Brinley as a role model. Brinley WAS and IS different, even at DHH. What was a good fit a year ago isn't necessarily a good fit now. Last report card from Brin's mainstreamed class Brinley exceeded expectations in key areas: Relationships with peers and adults Seeing diversity in herself and others Empathy Problem Solving Social Development Fine Motor Skills Writing Spelling Speech: Above Satisfactory Brinley is flourishing.And adjusting.And is happy. [last+day.jpg] This morning we walked to the bus stop for the last time. We live in a great new city with a school district that has far surpassed all our expectations Her future looks bright! [brinbusride.jpg] Posted by Shandra Reiswig at 10:03 AM 2 comments: Email ThisBlogThis!Share to TwitterShare to FacebookShare to Pinterest Thursday, March 14, 2013 Bubble Bath & Progress Last night was great. While giving Brinley a bath I had a full on conversation with her. She's understanding more and more with each day. I tried to video a little on my cell phone. I'm repeating back everything she's saying so she hears it twice. -It's progress- April 20th, 2013 will mark 3 years of hearing. Something to celebrate! CLICK HERE TO VIEW-----> http://youtu.be/9KwF1Ss8u3k Posted by Shandra Reiswig at 8:40 AM No comments: Wednesday, January 9, 2013 What a "doll" Another year behind us! So much has happened since our big move to LA. One big recent event? Brinley turned 4! [photo+1.JPG] The sun peeked out just long enough for the kids to play outside. What a fun party American Girl Doll party we had with a bouncy house, tons of crafts and last but not least some great friends. [photo+5.JPG] [9.JPG] [photo.JPG] A little update on Brinley: She is attending a Deaf and Hard of Hearing Preschool 3 days a week and recently transitioned into a mainstreamed Preschool the other 2 days a week. Of course I was a little concerned with how she would adjust to hearing peers but her teachers comforting words last week were music to my ears! According to her Brinley is doing amazing. She jumps right in to try omething new, a great listener, follows directions and makes friends easily. Last week a litte boy was in class sitting in the corner crying because he didn't want to put his shoes on. No idea what the circumstances were but I guess the Mom gave up fighting and sent him barefoot with shoes in backpack. Brinley's teacher said Brin walked over to the boy, grabbed his shoes and tried to put them on over her hoes...then started losing her balance and falling down on purpose and giggling . She did this 3 or 4 times until the boy started laughing hysterically and what do you know...He put on his shoes and followed Brin out to the playground. It's moments like these that capture my heart. Brinley is goofy. Whinny at times. Sly. Smart as a fox. Empathetic. Determined. Sweet as pie. Mommy and Daddy are SO PROUD [photo+3.JPG] [10.JPG] Posted by Shandra Reiswig at 10:30 AM 1 comment: Labels: the big 4 Thursday, October 18, 2012 Update in the Modesto Bee [brin.jpg] http://www.modbee.com/2012/08/17/2334514/an-ear-for-musicimplants-allow .html Posted by Shandra Reiswig at 10:27 AM No comments: Tuesday, June 19, 2012 Swim Baby Swim Well...It's the time of the year that I've been dreading, SWIM LESSONS! I mean I'm totally excited about swim lessons but just stressing on how we can waterproof Brinley's "ears". I want her to hear while her wim instructor is giving directions. I finally found an adult size wim cap that is stretchy enough to pull over Brin's head and cochlear implants! Worked like a charm. Just had to share this. [photo.PNG] Brinley was SO excited to swim...The second the teacher would start talking Brinley would raise her hand and yell "I DO, I DO"! Haha. I think she wanted to be the first one picked but she didn't even wait for the question to be asked. It was so cute. And of course there's Danica trying to pull her arm back down telling her it's not her turn :) I chuckled the entire time. [image-1.jpeg] Brin gave it her all. She was determined to splash the most water, jump the highest blow the most bubbles. That's our girl! NO FEAR! [image-3.jpeg] { "Look Mom, I do it. I swim. I big"} [image-4.jpeg] And last but not least...big sister Danica is by far the best sister in the world!!! She takes Brin under her wing, asked the boys to stop plashing her sister during class and when Brinley fell behind in the water race, Danica back tracked and took Brinley by the hand encouraging her to finish. How on earth did Rod and I get so lucky? Happy Swimming Shandra Posted by Shandra Reiswig at 6:27 PM No comments: Sunday, December 4, 2011 Olivia the Pig Bash for Brin [IMG_4869.JPG] Birthday set up at the Yogurt Mill [IMG_4871.JPG] Rule #49 Red Velvet Cake is simply the best!~ Olivia the Pig [IMG_4873.JPG] Tables had coloring pages of Brinley as Olivia the Pig.... [IMG_4876.JPG] Olivia the Pig favors [IMG_4897.JPG] Rule # 114 Never miss a very important party! ~ Olivia the Pig [IMG_4962.JPG] This is the happiest Brinley has ever been! (thanks to the M &Ms, prinkle and gummy bear yogurt toppings) Oh, and the hot chocolate! [IMG_5035.JPG] Glama Rhonda playing tag with the kids to work off some energy [IMG_5021.JPG] Seriously the CUTEST group of kids ever... Brinley is 3. Holy cow! It seems like yesterday I was at Oakland Children's Hospital and got the diagnosis that Brinley was deaf. I remember my Aunt driving home with me from that appointment (and I know he was trying to lift my spirits) but she said something to the affect of "It's not that big of a deal" and turned up the radio station. I was thinking to myself----- Not that big of a deal? Maybe because YOU don't have to deal with this....you're not the Mom of a baby that can't hear and is deaf. If I could of flash forwarded to Brinley's birthday party yesterday, WOW! I would have viewed this entire process differently. I've had a good attitude and positive outlook (don't get me wrong) but my Aunts comment was right on point. It's not that big of a deal . Brinley amazes us every single day. Last week at school her teacher came running up to me and said while they were rolling play dough Brinley asked "Can you help me roll it, OK?" That's a 7 word entence after hearing for 20 months. Average for this age is a 2-3 word phrase. Yay Brin! To all the Moms out there that are struggling with a child that has a special need (whether it be hearing loss, ADHD, Autism, or anything else) the most important thing you can do for your child is acknowledge your child's weakness and vow to do everything possible to assist them to becoming the best they can be. I know parents that have got a diagnosis or been told their child might possibly have an issue and the parents blow up, not my child, how dare you kind of attitude....and their child goes untreated. As each year, each month, each day goes by OUR pride in Brinley (and Danica!) just multiplies~ They are teaching us the biggest lesson there is to learn in life. Patience, understanding, devotion and unconditional love.Can't wait until our little lady turns 4! Posted by Shandra Reiswig at 7:39 PM No comments: Labels: happy birthday Wednesday, September 7, 2011 Boom shake shake shake the room.... [EMBED] video Fly girl in the making? I think so! In the morning I always turn up the volume to get the girls pumped up for a good day at school. I think it's hilarious how some say deaf kids can't experience music appreciation, it's Brinley's favorite time of the day! Notice Brinley's new choking dance move? Apparently her and her big sister have been playing "doggie" and since we won't let them use a leash, they pretend. Crazy girls! How stinking sweet is Danica?!!!!??? Brinley is lucky to have such a helpful sister and best friend in D [IMG_2716.jpg] -Sassy Pants- Love it! I sneezeeeeee AaaaaChoooo Brinley "Bless you Momma" Me "Thank you" Brinley "Welcome" [IMG_8150.JPG] Posted by Shandra Reiswig at 8:37 AM No comments: Wednesday, June 8, 2011 Brinley + Stanford = Love! It's been 7 months since Brinley's last "tune up" on her fairy ears. I took her for what turned out to be a 3-hour appointment. For 2 years old, she did great! I’m a little exhausted, the drive home took almost 3 hours in rush hour traffic. No bueno! [IMG_6963.JPG] Diagnosis: Brinley has a perforated left ear drum (hole in eardrum that never closed up from her surgery last year and still has a ear ache in right ear drum with fluid) Poor girl! On the bright side, Brinley sound booth reflected she’s hearing between 20-25 decibels! That’s fantastic ince average hearing is set at @ 20 db. If anything, she has average to mild hearing loss. Better than being profoundly deaf as she was a year ago, Dr. said she could stand next to a jet engine and not even flinch. Hooray!!!! [2011-06-08.jpg] Our audiologist Jan was surprised at the strides Brin has taken since her last appointment. In the video clip Jan has Brinley's ear hooked up to the computer and she gives off a series of internal beeps. When Brinley hears the beep, she puts a block on the pyramid. She’s really growing into her ears and loving to listen. What a gift! IFRAME: http://www.youtube.com/embed/v2gu7OrUCWs We are doing good on the Ling sounds:Ahhhhhhh, eeeeeee, shhhhhh, SSSSSS, MMM but still struggling with oooo --for all you CI Moms and Speech Therapists that know this lingo. For you CI parents....a fellow CI family created a Ling 6 Iphone application. I downloaded it, here's the format below. Search Ling 6 in itunes. [ling%2B6.jpg] Brin is exhausted, nighty night! [IMG_6941.JPG] Posted by Shandra Reiswig at 7:53 PM 1 comment: Friday, April 15, 2011 1 year Anniversary [2011-03-12.jpg] April 20th marks the anniversary of Brinley's activation of sound, 365 days of hearing. I'm nervous and super excited about making it to this point. A year ago when we were told Brinley was deaf I was extremely depressed and thought to myself "what in the hell are we going to do"? My thoughts were what kind of life will she live? What does this mean for Danica? In a way I felt a little jipped, mad at God for not making my child "perfect". MY OHHHHHH MY how time changes everything. I pray every single day (more than once) to God and thank him for my daughters. They are both perfect just the way they are. I've accepted this fact and my life has been able to move forward at lightning speed. So has Brinleys. On Brinley's hearing birthday I'll post a short video with her progress. Today in speech therapy her therapist was thrilled, Brinley had 5 new sounds,YAY! For those with special needs kids you Mommies know how we celebrate the small things! (for Danica) CHIRP CHIRP" when she sees a bird or Itty At for Kitty Cat. These days are so special and I'm thankful to be home. At Target the other day I was pushing the girls in the stroller telling them a joke and laughing when Danica asked me to stop the cart. I did and asked her "what's wrong honey?" Her reply was so precious. She said "Nothing, It just feels so great to have a Mommy". Totally unexpected and beautiful. Our children are a relection of ourselves and by the love Danica and Brinley show others-and while there's always tons of room for improvement I must say we are doing a damn good job :) In closing I thought I'd post my inspiration for creating this blog. 16 months ago, the day I found out Brinley was deaf I was driving home from Oaklands Childrens Hospital when this song came on. It took on a entirely new meaning to me and my life. Anyone that has daughter's know that special bond that is unbreakable. Thanks for reading... - [2011-03-13.jpg] Posted by Shandra Reiswig at 2:18 PM No comments: Wednesday, January 12, 2011 Proud Momma I haven't had a chance to blog in awhile. Between my husbands birthday, preschool, speech therapy, Thanksgiving, Christmas, family events, Danica's 4th birthday and Brinley's 2nd birthday- I've been kinda busy! But tonight I feel like talking :) Brinley is 2. It's been 8 months and 14 days since she's been "activated". I have many mixed emotions about the process. I mean, I wouldn't change a thing. Demanding authorization from insurance company, REFUSING appointments months out and just throwing myself into the world of deafness. It's been hard on Rod and I. Mentally and physically exhausting. But at the same time it's been impowering. I think how hard it is on me and then I feel super guilty. It's not hard on me----- it's hard on Brinley. She's the one that has to wear her equipment daily, deal with all the tweaks and issues that come along with it. The stares, the questions, pre-ops, genetic apts. It couldn't feel good to wear heavy sound processors over her tiny ears every waking hour. Or the long hours of rehab and all the extra work it takes just to "listen". But she's doing it and doing it with grace. It will almost be 9 months since our daughter has been hearing. She follows commands for example: Go get your shoes on Time to brush your teeth Its time to take a nap Jump up at the table Lets go wash our hands Give Sissy a kiss Buckle up Daddys home Time for bed Wheres your baby? Do you want to go to the park? Time to go outside Go get your jacket etc..... In the last month she's spoken the words More Ma Ma Ma Da Da Esssse for please Esssse for cheese when talking a picture :) Dog for dog Mmmmmm when eating something good NO! OT for hot Shhhh when putting baby to sleep Hi Hey Uh Oh Ni Ni for night- night It's not exactly where I thought we would be at 9 months post activation but I need to compare her to a 9 month old hearing baby. They don't say much but babble at this age so when looking at the big picture....we're on the right track. <3 Reiswigs You have been sent 3 pictures. IMG_6604.JPG IMG_6454-1.JPG IMG_6057.JPG These pictures were sent with Picasa, from Google. Try it out here: http://picasa.google.com/ Posted by Shandra Reiswig at 9:04 PM 1 comment: Monday, December 6, 2010 Light$, Camera....No Action Everyone around me is buzzing about their Holiday family pictures. Who they're booking with, wanting some ideas on how to pose...but the hocker has been how much money my friends pay for photos. HOLY COW! I've always loved to do my own pictures. I even did my own Maternity hots that turned out awesome. Brinley doesnt care for the camera lately and I've tried EVERYTHING (M&M's, horn, Mommy falling down, throwing a ball in the air, going cross eyed, Grandma doing jumping jacks, phew...tired just thinking about it) and we might get a smile 1/20 times. Today I had my iphone as we were playing in the backyard. I tried to capture the girls silly side. Then playful side. Serious side. I must say for using my iphone camera I love how my pictures turned out. Don't be afraid to try something new, use a new angle, try that picture software that gone untouched on your computer. I hope my girls look back on all my pictures and collages someday and feel the love and energy I put into capturing their spirits <3 Posted by Shandra Reiswig at 6:41 PM 1 comment: Friday, November 12, 2010 What is a sister? Every Friday morning we start speech therapy at MJC at 9am. At 9:30am we start storytime, playtime, snack time, etc. We head home about 11:30am. Today more than ever I'm just in awe at the bond Danica has formed with little Brin-Brin (as she calls her) In the past 24 hrs I've witnessed Danica helping Brinley put her ears back on when they fall off, grabbing her socks or a blanket when it's cold, sharing her juice, planting a SUPER BIG hug and kiss just because-----but today when leaving playgroup was by far the most touching. As we opened the car door to hop in the car, Danica (who is destined to be a speech therapist, nurse or teacher) stated Brinley, open the door, OPEN. OPEN. SAY OPEN BRINLEY. Brinley looked at her and gave a long "OOOOOOOO", best she can do, and I'll never forget how Danica reacted. She was so proud of her little ister!!!! D turned to her with tears swelling and said Good job baby Brin Brin, good talking, your the best baby sister ever. Take your time. MOM, did you hear that? Brinley talked for me...... So touching as a parent to see all your hard work pay off. It's not just Rod and I that have to adapt, it's Danica too. She's been so eager to learn sign language and communicate with her sister. Both of our girls are so incredibly special for different reasons. We are family, I got all my sisters with me. We are family Get up ev'rybody and sing Posted by Shandra Reiswig at 1:34 PM 4 comments: Tuesday, September 28, 2010 A phone call changes everything... The morning we left for vacation I got a call from a Geneticist at Harvard in Boston. She has news. Brinleys further testing revealed mutations in two different genes (MY07A and CDH23) unfortunetely these are Usher Syndrome Genes. For those of you that don't know what Ushers is- it's complete or profound deafness at birth or profound loss by age 1, balance problems and full vision loss by early childhood (age 5 or 6 however some make it to late teens before legally bling) Yes, it's a Deaf-Blindness Syndrome. I was told she doesn't have Ushers in the common sense because both genes would need to be affected and she only has one mutatation in two separate genes. So complicated. Fast forward- the call was to inform us Brinleys results were so rare, they have never been seen before nor do they have any documentation on it. "Uncharted Territory". This now leaves us with alot of questions. We're not sure what these mutations mean or how they will impact our life but there's no looking back now. Only looking forward- Posted by Shandra Reiswig at 6:27 PM 1 comment: Friday, September 3, 2010 My Frosted Flake & Pixie Stick Posted by Shandra Reiswig at 9:58 PM No comments: Saturday, August 28, 2010 Is no news good news?????? Finally, after a 14 week wait I get "the call" from Stanford Genetics Dept. They have Brinleys results back from her Genestics testing. I've been preparing myself for this phone call- What if they tell me Brinley has one of these hearing loss syndromes that also takes her vision? What would I do?nHow would I react? I just want answers as to why this had to happen to MY Brinley. Long story short......they found 2 rare genes in Brinleys testing however at this time (coupled with current technology) there's no way to connect her rare genes specifically to "hearing loss". So pretty much they don't know why she's deaf. No idea if other future siblings are at risk. No answers. Just a "let's do further testing in a year or two". I'm devastated. I didn't think I'd take this so hard. There's tons of deaf people out there that don't know the cause of their hearing loss. Why can't I be ok with not knowing and just accepting this is how it was planned to be? Do I have another child who is at risk for being deaf? Can I handle another CI surgery? All the planning? All the fighting with the insurance companies? All the trips for pre-ops and mapping? I'm not going to lie...... It's exhausting. HOWEVER, and it's a big HOWEVER- today I studied Brinley. As she laughed, and cried. As she rocked her baby to sleep and played house. As she slid down the slide, and attempted to read a book. As she followed Danicas lead and tried to do Gymnastics, summersaults and all. Watching her in speech therapy making progress or running to hug her sister when she's sad- Tonight we dressed up as fairies and Daddy took the girls flying around the house! So fun! When it was time for bed tonight Brinley grabbed my face with both hands, planted the biggest kiss on me and then proceeded to giggle and cover her mouth as if she was shy. She is such a special and loving girl and that moment will stay with me for the rest of my life. We are blessed with Brinley who has come into our lives and in my opinion- made life worth living. Hell with results. Live in today. Posted by Shandra Reiswig at 8:46 PM 1 comment: Older Posts Home Subscribe to: Posts (Atom) Fun Stuff Brin giggling as baby looking in mirror Faster faster! Video Signing fishy Photobucket I love my Sister Muuuaaahhh! Happy Valentines My best friend My sister... Labels Followers Blog Archive About Me My Photo Shandra Reiswig View my complete profile ir a principal | Ir a lateral Meet Cal... Sorry... we are too lazy or busy (you choose) to keep up two blogs. If you want to see how Cal is doing visit steveandbrynn.blogspot Posted by Steve at 10:30 PM 0 comments Bi-lateral??? I guess this blog is due for an update. Cal is about 18 months now and he is still our chubby happy lil’ dude. He has finally figured out the walking thing and wobbles around the house like he owns the place. His religion is still the same: he worships food and his big sister. Cal is doing incredibly well in both speech and sign. He probably has about 8-10 words: Mom Uh-oh Bye-bye Hi Hot More Up Ball Whu for What Animal Sounds (rooster, cow, dog, horse, duck) Pa-pa (his Grandpa) Dada is still ah-ah, but we are working with him. And beyond that he says almost all of his sounds: ah, ooh, ew, buh, wha...he's doing really well for 5 months post activation. Brynn gets every ounce of credit for Cal’s success. Audiologists, peech therapists, deaf mentors, PIP advisors and working with Cal – I don’t know how she does it, but she’s an incredible Mom. We are at point where we are wondering about a 2nd implant. There seems to be a lot of opinions out there, but very little hard evidence for children. So we will go ahead and ask all of you. Is there anyone out there that has received, or had a child receive a bi-lateral implant? Would you recommend it? What differences have you seen? Please let us know – we’d love to hear from you. Thanks in advance! Posted by Steve at 2:02 PM 12 comments Meet Cal's Voice... Cal loves his implant and loves his new voice. Every time his implant goes on it is like flipping on a voice switch - quiet Cal goes to noisy Cal. He is responding to pretty much all sound and is already on program 3 of his 3rd mapping. He is getting sick of working on his LING ounds, but so far he has said his mmm & aaah, and is so close to making an eee sound. And although it sounds like his whole life is about his CI, it really is not. He is a typical little dude that destroys everything, climbs anything, and drives his sister nuts. He's a little stud and he knows it. [EMBED] video Posted by Steve at 11:19 AM 4 comments Cal's Activation Well we guessed right! Everyone asked us how we thought Cal would respond when he was first turned on, and we said "he'll probably do his nervous laugh." He was such a good sport at the appointment. It is a long and strenuous process for a 1yr old, but he did a great job! For the past two weeks, Cal has just been getting acquainted with his implant. Yesterday we went in again and they activated more electrodes and turned it up a level. Today at breakfast Londyn started talking to Cal, and he turned and looked at her! I think it is the first time he has actually heard her talk. It has been a whole new world of fun at our house these last couple of weeks, and we are so grateful for the genius doctors that came up with this miraculous technology. Here are a few pics of his new skull candy! Posted by Brynn at 11:54 AM 2 comments Cal's Eventful Two Weeks [EMBED] Mr. Cal turned 1! He had a great party with family, ate some yummy cake, and got a whole bunch of fun presents! Since he turned one, our weet, cuddly boy has turned into a complete maniac. Cal is definitely going to be a wild man like his daddy! Cal's Surgery went extremely well. He was only in surgery for an hour and a half. They were able to place all of the electrodes in the cochlea without any complications. In fact, he was back to his normal elf about 7 hours after the surgery. There were three other 1 year old babies that got implants that day, so Cal had a lot of fun playing with his new friends! Our little man is such a trooper, and we are so very proud of him! Posted by Brynn at 11:03 AM 4 comments Surgery Is On! After countless… phone calls faxes managers forms and waiting, our insurance finally approved Cal’s cochlear implant. That means that this Friday is a go! The long wait is over, Cal will be implanted by the end of the week. Excitement worry happy ad concern and relieve setting in. We will be sure to let you know how it goes. Posted by Steve at 2:17 PM 5 comments Happy Birthday Cal! 365 days ago that Brynn and I were in the hospital holding our tiny little infant. And here we are, one year later, holding a fat little man. And that fat little man has brought us more happiness then we ever thought possible. Calan is the type of kid that smiles for anybody, laughs for no reason, waves to passing airplanes and burrows into your neck when he’s tired. I’m lucky to be his dad. Happy Birthday Cal. Posted by Steve at 3:59 PM 1 comments Dad's Sentimental Rant By no means do I consider myself an expert in all things deaf, but what I have learned in the past 8-½ months is astounding. As a parent you read books, you learn audiology results, you pour over cochlear implant tudies, you take ASL classes, you meet weekly with PIP, you immerse yourself in the Deaf culture; whatever you can do, you do. You figure the more you learn, the less lost you will feel. But lately I find myself grateful that I have been able to learn so much. I’m grateful that I am learning another language. I’m grateful that I have discovered a culture I knew nothing about. I’m grateful for friendships made. I’m grateful my son is deaf. I know this post is ridiculously cheezy (and I am sorry for that), but for parents who are maybe just finding out that their child is deaf. It gets better. It gets much better. In fact, it becomes pretty awesome. Believe me, watching your little 10-month-old sign Mommy & Daddy is about the best thing in the world. I’m not saying that there are not trials and heartbreaks. I’m not aying it’s easy or painless. I’m just saying there are good parts too. And the older they get, happiness and acceptance start to take over all of the worry and sadness. Like I said, it gets better...much better. Posted by Steve at 10:23 PM 7 comments Date Set The date is set, the okay has been given…we are officially a go. Cal is cheduled for his cochlear implant surgery on Sept. 4, 2009. So now that the date is set and most things have been squared away I’m tarting to freak out a bit. Part of me wants the day to never come and the other part of me says it can’t come soon enough. Being a parent is hard enough without having to make multiple absolute life altering decisions for my kid well before he even gets to blow out his first candle. So goes the life. Cal’s still a ridiculously tempting piece of chunky. Every time we leave the house people can’t help but kiss his fat cheeks. Here are a few pics we had done recently: Posted by Steve at 12:12 PM 4 comments Cal's first words (signed of course) Yay for Cal! He said his first words! Just like a hearing kid who says "Mama" for the first time, a deaf child will sign it. I know, I know, lots of kids sign at nine months, but for some reason it is really exciting to see your child sign when it is his only form of communication. Cal's first sign was "dada." Can you believe that! After all the work I have done with him to sign Mommy, his first word was daddy! Londyn did the same thing. What is that all about? The next igns to follow daddy were mommy, more, and ball. Cal also understands the sign for light and airplane. I figure that is the only benefit of living in the direct path to the airport. We get a gazillion planes flying over our house every day, so Cal has had plenty of opportunities to learn that sign! Here is a video to demonstrate his skills. Of course Steve put him through torture in order to capture it on film, but what do ya do? Posted by Brynn at 4:14 PM 3 comments Older Posts Home Subscribe to: Posts (Atom) Our Little Dude Calan "Cal" was born in August of 2008. He is a happy little guy that rarely misses a meal. When he smiles (which is often) it covers his whole face. He loves his big sister and will only cuddle with his mom. Cal is perfect in every way. Cal also happens to be profoundly deaf...and these are his adventures. This blog is for family, friends, strangers and (to be honest) me. Archive Met along the way... and he's grown ... 10 months ago ROAR! 1 year ago Zeke's Christmas Program 2 years ago It's Not Fair. 4 years ago Pre-Thanksgiving News 5 years ago Cochlear Kids country kids with cochlear implants Pages Showing posts with label cochlear implants. Show all posts Monday, October 12, 2015 11 Years of Hearing It is hard to believe we are approaching 11 years of hearing with our first born. Brooklyn has been hearing for almost that long as well, but Gage was three and a half years old when his first cochlear implant was turned on. Here's how funny all that noise can be! IFRAME: https://www.youtube.com/embed/4XHy-3_4hxk We had no idea that the three years of silence or at least minimal hearing aid benefit would never show at age 14. We didn't expect him to catch up so fast but a little boy's determination and hard work paid off. He was released (graduated) from AVT only a year later just when his sister began her journey. These two compliment each other well and they sure have taught me more than I could ever teach them! IFRAME: https://www.youtube.com/embed/rAPd-9NLeJc I need to post some more videos!! 0 comments Email ThisBlogThis!Share to TwitterShare to FacebookShare to Pinterest Labels: cochlear implants, correcting speech, deafness, Goldenhar Syndrome, HEAR Center, hearing loss, Surgery Saturday, September 12, 2015 The Problem with Hearing Kids The problem with hearing kids, is they hear. We hearing parents of deaf children grow accustomed to being able to get up at 4:00 a.m. (or stay up to 4:00 a.m.) and do dishes, laundry, vacuum, any noisy task we want because our kids will sleep soundly. When hearing friends come over, we panic. Suddenly everything we do becomes magnified by 10,000 and we realize how noisy we parents really are. I "shhhhed" myself this morning when making breakfast as the two deaf ones slept soundly and the one hearing friend (also was out cold) was at risk for being awakened. Luckily, no fire alarms blared this morning (which is usual) so I was pleased they got their much needed ZZZs. I guess we can take that early morning time to do other things like, blogging, drinking coffee, and watching the sunrise! [2014-11-29_06-32-52_147.jpg] Labels: cochlear implants, deafness, hearing loss, no implants Brook Saturday, July 18, 2015 Making an Electric Guitar So what do bored teens do when school's out for summer...make homemade electric guitars of course! This first video is the very first one he made last week. [EMBED] video The upgraded version of the guitar soon followed when a neighbor (who is very smart about a lot of topics-guitars is not one of them but welcomed the challenge) took the boy under his wing and let him come over everyday (for hours on end) and use tools, ask questions, and together...two great minds came up with this: (though he warns he still has string work to do) Labels: ADHD, cochlear implants, deafness, Goldenhar Syndrome, hearing loss, parenting, random stories Sunday, July 12, 2015 Heavy Metal [IMG_20150712_150558_edit_edit.jpg] Let's face it, he was heavy metal the minute he picked up his first guitar. Well, not really, but he is certainly cool enough to be... We finally got the boy in his braces. Sorry to all the Goldenhar patients that don't have a cleft palate, insurance will likely NOT pay for the braces. But that's okay. He is in them, and will be for a while. They only put on the top row this go around and will add the bottoms at a later appointment. He will also add the spacer later as well. He didn't want to put everything in his mouth at once and have the Gman super uncomfortable. The braces hurt bad enough, but nothing a little ibuprofen won't handle. We will remove the braces in about 6 months temporarily to add composite bonding type additions to the front teeth to make them look more like full pretty teeth. After that is done by his family dentist, we'll go back and put the braces right back on. The bottom row will be moved only slightly forward and then a pediatric bridge will fill in the remaining gap where he has no adult teeth (missing bottom front four). After the boy finishes growing at around age 20, he can decide if he wants an adult (more permanent) bridge or dental implants. I know it sounds like a lot, and we haven't even been back to see the urgeon about the whole jaw issues, but he too wanted to wait until after age 18 to fix any of that (should we go in that direction). However, by the time the chap is in his early 20s, he'll be so glad he did all of this and I think he'll love the results! We are blessed as always to have a magnificent team helping and guiding us along the way! The main concern now is keeping the health of his teeth and progressing in weight gain. Gman is afraid this will set him back but we have loads of ice cream to supplement his lack of biting into food that is just plain uncomfortable and not recommended for a young'un with braces. The anxiety is behind him now and he's getting used to the heavy metal already! Labels: braces, cochlear implants, Goldenhar Syndrome, music, orthodontist Sunday, July 5, 2015 Hovering [gage%2Bguitar.jpg] On an impromptu stop at a Wal Mart, my mother decided to get G's hair cut. He needed a cut desperately and she was being the good grandmother and getting that little chore out of the way while they were out hopping. Well, "the girl" my mother called her, sat G down and mother explained to her that once he removes his CIs that he'll hear nothing. Mother proceeded to explain how he wanted his hair trimmed up and assured "the girl" that she'd stand close by in case she needed her to communicate for her while he was off air. Hmm, "the girl" got really nervous and told my mother she'd have to go it down and not hover over her while she cut hair....(hover over her?) Yep. As you can imagine, that didn't go over well with G's grandmother. Mom said, "I'm not sitting down until I'm certain you know how he wants his hair cut!" Needless to say, he got a slight trim and we'll just see that he gets to his regular barber (who is much more understanding and nicer) than ome people tend to be. Completely made the Gman uncomfortable as well as mom but they both learned something from their impromptu stop. Labels: advocacy, cochlear implants, deafness, Goldenhar Syndrome, hearing loss Thursday, July 2, 2015 Wanted... ...because some deaf children really do hear! The boy picked up a guitar last summer and hasn't put it down since. So five guitars later, we started him in guitar lessons to couple his natural talent...I should say un-natural talent, God-given, God-decided-to-bless-him talent. However you look at it, if you had asked me ten years ago when he was four if he'd be able to ever hear a guitar well, much less play one, I would have said NO. Labels: cochlear implants, Goldenhar Syndrome, music, random stories, religion Sunday, March 15, 2015 Regional Tech Fair [IMG_20150313_100447.jpg] One proud Mama alert... Never in my wildest dreams did I imagine this high-tech kid would be tanding in front of judges presenting a project about her cochlear implants. She and her friend/partner decided to do a project about B's ears and how technology helps her hear and the impact it makes at chool, including her friends' point of view and how her peers play a role in her success. These girls were asked many questions, they answered confidently, and brought home first place medals......next month, the are to present their project at the state competition! 2 comments Labels: cochlear implants, contest, hearing loss, presentations, School tories Tuesday, November 11, 2014 87 Gman had an appointment today to check his height and weight because ome of his medication suppresses his appetite. Well, at age 13.5 exactly....he's finally broke the 80 lb mark at a whopping 87 pounds!! We are thrilled! He's 5 ft 2 in and gained 10 lbs in the last 5 months!! His failure to thrive as a baby has come a long way. Orthodontia was denied by insurance despite his syndrome that is directly responsible for his anomalies. We go see the oral surgeon again in January and see if new paperwork will get it passed through because he not only needs braces, he needs dental implants and possibly jaw surgery as well. I used to think that was so far in his future but at age 13, he's fast approaching the age (17) where they want to address the jaw distraction issue. Only time will tell, but he's a pure-bred champion so we'll cross that bridge when we get there (and with a smile on our faces). Brooklyn is still doing well. She's almost 11 now [DEL: and thinks she knows everything :DEL] . Her grades have improved quite a bit this first report card and she is doing great. She listens to music with typical headphones on her tablet but still uses the speaker phone while using a cellular or other telephone. Gage prefers texting and just doesn't seem too interested in learning to use a phone any differently, though he can hear some using the speaker phone. Brooklyn's hens are now laying. She started with 18 for the 4H project and gave away 9. Some of her 9 remaining began laying eggs this week (brown ones). We are still waiting on the Easter-eggers to lay which will be pastel colored eggs. She is such a good little "mama" to them. Other than that, we just enjoying mountain/country living and can't believe how Blessed we truly are! Labels: ADHD, cochlear implants, deafness, genetics, Goldenhar Syndrome, hearing loss, music, orthodontist, School stories Wednesday, August 20, 2014 A Blakely Update Not a lot of posting from the Cochlear Kids as of late but we are in full swing here in Alabama public school. Gage has started the 8th grade and is doing well so far. They are beginning to read The Giver in English class. He was also assigned Music Class and despite his initial thoughts, it will be a true asset to him in the future if he wants to play guitar. He picked it up a few short weeks ago on summer break and with a few chords from his daddy and a few from a cousin, he's learning... Brooklyn has entered the 5th grade. She is still with me everyday since I work at the school full-time now. She will leave me after the 6th grade and go over to the high school with her brother. Her N6s are till doing fabulous! She loves her chickens which will start laying eggs within the next few weeks! We love it here on "the mountain"...the world moves a whole lot faster than we do but we wouldn't change a thing! [1405519952162.jpg] [1403626665275.jpg] [1400890809058.jpg] [2014-06-26_09-48-24_836.jpg] [1405383329747.jpg] Labels: cochlear implants, music, random stories, School stories Saturday, July 12, 2014 Her "New Ears" Audiogram Her last audiogram in 2013 w/her Freedoms [BROOKaudiogram.jpg] ...and you can see her Speech Reception was at 20 db...meaning she can hear speech softer than that looking at the chart but not clearly enough to understand it until you reach 20 decibels. Now with her new N6's... [Scan_20140712+(2).png] She still hears very well with her CIs but can hear clearly at 5 db in the sound proof booth. That's a soft whisper! We all know that in any type of noise that will dramatically decrease her ability to hear speech but we are very pleased with her new ears and the main thing is...she too is very pleased with them and that's the most important!! She will be starting 5th grade on August 7th and as her team leaders, we have agreed that she can try the classroom(s) without her FM. She does NOT want it and this is the same grade Gage quit using his as well. We sought the advice from her Hearing Impaired Teacher and she agrees we could give it a try. If she needs it, we'll give it back to her no problem. I work at the school so I'm just a short walk away if he needs me. 1 comments Labels: audiology, AVT/speech, cochlear implants, deafness, FM systems, HEAR Center, hearing loss, MAPping, School stories, upgrade Saturday, May 10, 2014 The Teenager [gage+truck.jpg] Thirteen I remember my first Mother's Day. I wondered if I would still be a mother a week later, a month later or a year later. People buzzed around me with concern for my newborn child. We become mothers because we have children. This little guy taught me how to be selfless, how to be patient, how to be deaf and then how to hear. My life slowed down and I watched him grow up in slow motion, yet here he is, a teenager. Not long ago I was driving down the road on the way to a Wednesday night church service and I hear a 12 year old voice lift from the back eat, "Mama. I know why you only had two kids." I respond at the odd and random comment, "Oh you do? Okay, let's hear it." He said, "because you didn't want anymore deaf kids. We're a lot of trouble and you didn't want to have to do all that again." I quickly interrupted, "That's not true or I would have never had your sister. You would be an only child." A smile reached his face as we pulled into the parking lot. Children teach their parents just as much as parents teach their children. Families grow and learn how to love each other despite faults and failures. There are times I wake up in the mornings and hear a child's voice that thirteen years ago, I was certain I would never hear. He enjoys his silence at times and will often belt out an old church hymn in the shower and I realize, he can't even hear his own voice...he's just offering it selflessly to his family and to The Lord. He can put his "ears" on and listen to the rain pound our old tin roof and a smile of appreciation will spread across his face. He brings more joy to our family with each passing day and I am so very thankful I was chosen to be his mother. We are honored to own a teenager this day. He is loved, he is appreciated, he is a Blessing. Happy birthday buddy. 3 comments Labels: cochlear implants, deafness, Goldenhar Syndrome, hearing loss, music, parenting, religion, speech reading Friday, May 9, 2014 New Ears Update [Brook+new+ears.jpg] After a full ten week wait, we finally received B's new ears! She was the fact that she can now change the colors without the messy stickers. We also figured out that the N5 covers (her brother wear N5s) fit her N6s and they are cheaper to buy so we ordered a few more colors for her along with the coil covers to match. I am so proud for her and proud of her. She was asked to speak to a first grade class about her implants since their reading story was about a deaf child. The teacher has a deaf nephew and has taught my children in the past so she was quite familiar with the cochlear implants. Brooklyn was happy to show off her ears yesterday to the crowd of six/seven year olds. [pink+ears.jpg] We will take her back in a few weeks for some minor adjustments and put her in the booth for an audiogram so we'll have a better idea/comparison of how she's hearing. We only have two more weeks of school here in Alabama and we're out until the beginning of August! IEPs are done and State testing is underway. She has no special accommodations other than testing in a small group setting in case she encounters technical difficulties. I am sending her back-up ears just in case. Brooklyn has also enjoyed the bilateral accessory cord she can plug into her electronics (and so do I). We have a few of the swim bags we will use over the summer but we will be looking into purchasing the new aqua devices Cochlear has come out with for both children so they can wim (without the embarrassing bags). All in all, we are very excited, very pleased and very Blessed people! [plugged+device.jpg] Labels: bilateral, cochlear implants, hearing loss, IEPs, music, School tories, upgrade Tuesday, April 8, 2014 Week 10 We have begun week 10 of the "it should take about 8-10 weeks for the whole process". Looks like our "process" is taking longer. However, I did get a letter from our insurance company that states that it appears he will qualify for the replacements. I heard from SunMed today who tated they are still waiting for final approval and then they will contact me. So again, we sit and wait. I was teaching yesterday about adages/proverbs. One adage stated, "Patience is bitter, but its fruit is sweet." I'm going with that!! Next week I have both of my children's IEPs for school. Gage will be preparing for the 8th grade and my B will be in 5th!! How did this happen? Labels: cochlear implants, deafness, hearing loss, IEPs, School stories Wednesday, March 12, 2014 Waiting to Hear... ...and the latest response from SunMed is..."Mrs. Blakely, I will contact you as soon as I hear from the insurance company." Here is what I would send if I we are still waiting at the end of this week: Dear (insurance company): My ten year old child, Brooklyn Blakely, is seeking approval for replacement processors for her cochlear implants. I understand that your work load holds tremendous weight and we are trying to express patience as we await this approval but we have basically been on hold ince the first of February. While everyone in your office enjoys impromptu conversations with trangers in a day's passing or the background music playing overhead in your favorite local retailer, my child is missing out. She smiles and nods her head at random people as they speak because she has no idea what they just said, or may have asked. She has to ask what song is on the radio because half the time sound is cutting in and out. The eight year old "ears" she is currently wearing fail her almost daily as he gets up in the middle of class instruction to try to restart them, ometimes without any luck at all. This is very embarrassing for her ince nobody else in her class has hearing loss. While everyone in your office enjoys relaxing at home after work, she comes home in tears on some days, purely exhausted from trying to hear the world around her. I understand the difficulty of an overwhelming case load, but as you hear the softest droplets of the rain on your rooftop or listen to the words of your favorite church hymn, please remember my daughter. She needs those things too. Thank you so much and please look into her case if you get a chance. It is important we get her replacements as soon as possible. Thank you, Val Blakely [edited+light.jpg] Labels: cochlear implants, no implants Brook, random stories, School Monday, February 17, 2014 She's Not Been Approved [1620432_10202990241414020_671871994_n.jpg] We've waited (almost) a month now since we had our fundraiser, since we ent in our initial paperwork, and finally we have a response...she has not been approved (YET). We are just now getting to that approved/not approved point. I did receive a figure (a total) on the amount of out of pocket expenses for the processors and WE HAVE ENOUGH FOR TWO!!!! Hallelujah. I quickly responded with "Move forward, move forward. We have it!" Several thousand dollars is a lot of money but Praise The Lord He's een fit for her to get two new ears, not just one. Now they are ending the "okay" to my insurance company to proceed with paperwork and when they approve her..(yes, I'm claiming it, V-vi-ctory!)...we will place our order. I already have her an appointment AEA week in hopes we will have them in our hands by then, and ready to TURN THEM ON! And what's even better? We have enough to buy two new "ears", the accessories she wants, extra batteries, the aqua-packs for swimming, and maybe even enough left over cover the clinic bill once she goes in for her MAPping session to have them turned on and in tip top working order! Covered-in-full. If, and that's a big IF, anything were to be left over after I get her all set up, I will buy a few extra parts for Gman's CIs so he will continue to be in excellent shape and we should be set for a while! We could not have done all that on our own, so thanks to HIM, HE guided our little community and provided a way. Thanks to those who followed HIS lead! My two PTO friends who worked so hard, the two wonderful families for singing, and every last person who donated money or food for the event or even prayers! I had one lady hand me a check one day and with tears in her eyes she told me that after her daddy died (recently) she had a little bit left over and instead of buying herself the earrings she wanted....she wanted to give it to my B to help with new ears. She said she couldn't stand the thought of her needing new ears and knowing she was spending money on "bling" so she wanted to give. Warmed my heart! Because of this wonderful community, this rural, small town big-country place...it looks like my baby girl will be hearing better in no time! Thank you all. B is smitten! Labels: bilateral, cochlear implants, HEAR Center, MAPping, parenting, upgrade Thursday, January 30, 2014 Thank You [N6+updated+drawing.jpg] As we begin to fill out our thank you cards, I realize I didn't buy enough. There is no way for me to personally thank everyone because there were so many people who donated money, food, their voices, and prayers for the event last weekend. There were people in the crowd I never got to see, or hug, and filling out these cards seems like such a mall thing to do. Our community has pitched in and raise over $5,000.00 towards Brook's new ears. She said the other day, as I tried everything to just turn one of them on, "I want ears that match. I want ome that are all the same color and not pieces put together!" We have ubmitted her paper work to SunMed Medical and now we wait. They say the whole process will take 8 to 10 weeks but we are very excited, and nervous, and trying to be patient. Labels: advocacy, cochlear implants, upgrade Monday, January 27, 2014 Awaiting the Call I am now just awaiting the call back from SunMed (I had not contacted them prior to this weekend's email) to see if we have enough to proceed with Beez replacement processor order! I have to work all day but can't wait to get home and see what they say. I know they'll have paperwork to do, info to wait on from insurance etc. but to know that we have taken one step forward towards getting her new "ears" is beyond exciting. I was shocked when the benefit singing raised so much in one night but I shouldn't be. The Lord Blessed us all in that room Saturday night and I'm grateful we were just present! The Angelic voices that my children could hear, the Testimonies that my children could hear put a mile on my face but the Angelic voices that I could feel and the Testimonies that I could feel, put a smile on my heart. We love our community and are very close to that upgrade because of them! [N6+chart.jpg] Labels: cochlear implants, upgrade Wednesday, January 15, 2014 Prepping for an upgrade We are now prepping in high gear for Brook's upgrade to the N6 Cochlear implant processors. I suppose being out of the loop, not reading blogs like I used to, not reading the group messages, etc. I am just now getting the word from Cochlear that they do not bill my insurance company. That will be up to me to seek reimbursement for any durable medical expense. We will be required to pay the $7275.00 (I am aware they cost over $9,000.00 each but we will do a trade in to receive a discount) upfront for each ear. We are taking it one ear at a time at this point! We have some local friends doing a benefit for us which is cheduled for January 25, and we are very excited. We have a really good start and I thought it would help our friends and family keep up with the process/progress with a visual so each time we add to the "pot", I'll put up a new chart and carry it right through the upgrade process. It's sad that these things cost this much but a blessing that he hasn't got injured or had a failure to require surgery again. Insurance would be billed directly then and we wouldn't have such an upfront expense but we are excited for her, she's been needing an upgrade for years now and this will only make us work harder to get it for her! We aren't looking at it as a set back but a push forward. We've been praying about it, so we encourage all of you to keep praying for her, HE can and will make it happen. We're claiming this one! [chart+N6+upgrade.jpg] Labels: bilateral, Charity, cochlear implants, upgrade Friday, December 27, 2013 The Latest on Goldenhar Boy [2013-12-26_12-27-29_922.jpg] So we spent most of yesterday at his annual appointment that usually takes six hours (but we got lucky and were done in 4). This is where a ocial worker, nutritionist and several dental experts get together and ee some of the special cases to make sure the kids are gaining weight, getting proper nutrition and to discuss future surgical plans. We have been planning for a jaw distraction in his teenage years all along but yesterday the idea was tossed up that a different surgery may be better for him. The main problem is finding a proper bite for him with so many missing and misshapen teeth. We are going to start seeing an orthodontist soon (which was in the plans all along) to see if he can move the teeth he has into some kind of "order" if...and that's a big IF, he has enough bone to work with...there may be some bone grafting needed as well. Any type of mouth surgery isn't the most pleasant of urgeries, so I hate it for the little guy. However, we are truly Blessed. Most Goldenhar patients are in far worse shape as far as the mouth/face goes, so we are very thankful his problems are limited. He finally weighs 70 lbs at (almost age 13) and for that we are thankful as well. He's growing, slowly but growing, so for that we are Blessed also. Love this little fellow, and like my Maw-Maw always said, "God's got His Hands on this one." On a lighter note, he got to see Ms. Sue Sue the artist again. Even though he may have outgrown her coloring, painting, stenciling on an average day...he loves to see her every year and just sit down and talk with her, paint with her, and truth be known, I think Ms. Sue Sue enjoys it just as much. She always remembers him. Labels: cochlear implants, deafness, Goldenhar Syndrome, parenting, Surgery Sunday, November 3, 2013 Study Day [2013-11-03_09-56-01_442.jpg] Back at the first of the year, as my Dermatologist removed the cancerous tumor on my foot, we discussed my children. She was very interested in the oldest child's Goldenhar Syndrome. She had heard of it, but never seen a person who had been diagnosed to her recollection...so she asked us to participate in a large event held there each November where Dermatology Doctors come from far and wide to learn more... My mom and I loaded the boy up at 5 am this morning and headed south, to UAB's Kirkland Clinic. They provided us with breakfast, coffee, cookies, other snacks, and more coffee. The boy earned a nice monetary prize from the University for his time and that is probably the only reason he wanted to go (typical). They placed us in a room (other patients were there also) and I kid you not...over a hundred doctors from all over the world came in small groups where I gave my "speech" on cochlear implants, Goldenhar Syndrome, skin tags, scars, dermoids of the eye, etc etc etc... [2013-11-03_07-46-04_431.jpg] Gage did grow tired of the whole event after the first hour (we had already seen like 80 people at that point) but he was polite as expected and they all thanked him/us for coming and helping out over and over again. I had explained to him before we ever went that this would help some child in the future. If they come across another child with these features, conditions, anomalies, they may have some idea what direction to point the parents...and that is all we wanted to do. They also reiterated that him as well so he was happy to help. Both of the kids did well on their report cards this time, and we continue to mainstream as we always have. They are both participating in the church Christmas play again this year and we are about to leave for practice now. We still hope to upgrade Brooklyn's "ears" by April of next year as we must come up with the funds, since insurance will only cover 80%, we'll need over 3 grand before we upgrade to the N6s. Fingers crossed and praying now, we hope to accomplish this for her. She is on her last few spare parts right now! Until next time.... Labels: advocacy, bilateral, cochlear implants, deafness, genetics, Goldenhar Syndrome, hearing loss, parenting, presentations, professionals, religion, School stories, skin cancer, Surgery Older Posts Home Subscribe to: Posts (Atom) Get rewarded for shopping online Follow my blog by Email ____________________ Submit Popular Posts It does get better as my kids age...I'm talking about my water park anxiety. All parents have a certain amount of fear I guess taking mo... Ahhh, yes they got the reward (that was suppose to happen last week but the migraine rerouted us). I can never say our appointments are ... Can you believe that I can not walk thru a craft store w/out wondering if the items would look good attached to my kid's head? Spent an ... I finally got around to reading the final reports sent from UAB from that study my kids participated in for kids with hearing loss to test t... I have to let the videos speak for themselves! But you'll notice peech babble, and Emma's speech has come a long way. You can see f... Brook can not take her eyes off of her newly pierced ears! They don't get in the way of her CI processors at all and she's so deligh... Ladybug Val's latest book (click to buy) Blog Archive [Blog Archive__] Translate Get Paid to Blog Get Sponsored by Big Brands Ladybug-download today Support independent publishing: Buy this e-book on Lulu. Check out my blog The Road -my Christian blog The Bama Life-country life, freebies, prepping and more. One Brick Shy-the lighter side of life "Cochlear Kids" Followers Labels I'm All Ears (no longer available) by Val Blakely & Tamara Harrison, M.S., CCC, SLP [728X90.gif] Awesome Inc. template. Template images by andynwt. Powered by Blogger. heart. speak with love. - RSS listen with your heart. speak with love. Our Family's Cochlear Implant Journey Saturday, June 15, 2013 Bless his heart. 6 years ago when this whole journey started, I either was hiding in my bathroom crying or walking around completely full of anxiety wondering what the future would hold for my chubby baby boy. Would he be able to communicate? How would he communicate? Would he be able to go to his neighborhood school and be with his typical hearing peers? My deaf little boy. It took me a really long time to say that word. Deaf. I have a deaf on. He was a baby with hearing aids and then a toddler with a Cochlear Implant. Strangers would stare. Sometimes sweet old ladies at the grocery store would pat my shoulder and tell me how sweet he was and "Bless his little heart". So now, 6 years later as I beg my little boy to save the rest of our chat for tomorrow morning because it really is past his bedtime and he had such a fun day playing with his friends, I am at peace. Sorta. Christian finished Kindergarten yesterday. Kindergarten in our fabulous neighborhood school where his buddies from around the corner and our little town go. Kindergarten in a typical classroom with typical peers. Kindergarten in a school where he is the ONLY kiddo out of over 500 that has Cochlear Implants. I spent this year at our mainstream school excitedly explaining to parents, teachers, administrators, and coaches "Yes, he's deaf BUT...." My bilateral Cochlear Implant boy is able to do things academically and ocially that every other 6.5 year old boy can. He became a class leader, a class clown and quite the athlete this year. His hearing loss, while always on my mind, was also a bit further down the list. By December, I found myself reminding people that he was deaf, and don't forget to have him sit closer even if he thinks he doesn't need to (he really doesn't need to, but it makes me feel better as his Momma). Along with his great success came different worries. We are still really working hard on rehabilitating his year old left Cochlear Implant. Teaching a deaf kid (even one like Christian) to read and tell the difference between a /th/ sound and /f/ sound is a challenge and frustrating sometimes for the both of us. And then there are the typical Kindergarten things like high emotions and focus that come into play. It's been a fun year with some hills to climb. On the last day of school, Christian is writing simple sentences. He's reading right where he should. He is excited and can't wait for 1st grade. My deaf little boy. Exactly where he should be. [blogger-image-1551647862.jpg] at 6/15/2013 2 comments: Links to this post Monday, May 27, 2013 5 years. I no longer have little babies. Christian is finishing up Kindergarten in 3 weeks and Lily is eagerly awaiting the start of Pre-K this Fall. As my dear friend Kim puts it, we're almost out of the weeds. Family trips are easier as they are older. The dynamic of our family life has changed. While it's become much more busy with lacrosse games, ballet recitals, and the constant hustle and bustle of life, the insanity of having babies and toddlers running the show has given way for a more controlled chaos. My college roommate just had her first baby and was asking me when the kids first sat up, how much food they ate and a bunch of other questions that quite honestly I couldn't remember. Life. It just moves. Really really fast. At least that part of our life. And then there is our life as a family impacted by hearing loss. 5 years ago today Christian received his first Cochlear Implant. Over the past 5 years, we've had months that have flown by with progress and weeks that have stalled with set-backs. I may not be able to remember the month that my kids started sitting up but I can tell you the exact moment when Christian acquired the /sh/ sound. 5 years later, my sweet and silly little boy is thriving in a mainstream classroom with typically hearing peers. He just finished up his first lacrosse season (with a championship win), loves Tae Kwon Do, is obsessed with sports, is reading books and is a great friend. He's responsible, loving, sensitive and hilarious. The icing on the cake is his second CI, which he received a year ago last week. His localization of sound, articulation and his academics have really benefited from that second ear. He's just doing great. It's not the end of the road for us though. Weekly therapy appointments for his newly implanted ear, constant monitoring of his mainstream classroom experience still dominate our family life. But it's gotten easier. 5 years later, I'm not as scared. Just as he's gained confidence, I have too. My smart and sweet little boy continues to work hard, roll with the punches, and just defy the odds. Christian, I'm so proud of you. Every single day your amaze us. [DSC_0926.jpg] at 5/27/2013 4 comments: Links to this post Friday, April 5, 2013 THIS is how mainstreaming should work I wanted to share a snippet of a response that I just wrote to our fantastic Teacher of the Deaf who sees Christian once a week. I think it gives a window into what we go through everyday here: R- Thank you for this fantastic update. Chuck and I are SO appreciative of your detailed reports. I feel so disconnected sometimes (even though I do my best to get into the classroom frequently) and feel very lucky to have your eyes and ears there for us. Since Christian is our first, I often find myself wondering "Is this normal or is it a deaf thing" and have no idea half the time what to expect. The other half of the time, I'm winging it :) My Christian is an amazing little guy, and he no doubt has made incredible gains with his CIs, but I still worry for him and how he's progressing with his literacy. I have a feeling the moment it all clicks, I'll be able to breathe better. He loves his time with you---yay! It sounds like he is doing great with his listening for you. I'm curious, during his listening of words when he got 6/9 was that just left only? Or both? I would love your input on any communication I give to the school regarding his placement for next year. In addition to the sheet that will come home, I plan on writing to Mrs. L. outlining Christian's trengths, and also noting some specific challenges. The placement with Mrs. R. was SPOT on, so I have a positive feeling about next year but just want to be sure. I know that a controlled yet innovative classroom really benefits him. He needs an organized teacher who runs a tight hip but is flexible and is really willing to work with him. And Please please please tell me that you will be our provider again next year? Again, thank you. It's hard to believe that we only have 2 more months of school. And it's hard to believe that in just over a week we'll be celebrating him going bilateral. It's still mind blowing to me. Christian's in-class teacher and his service provider collaborate. The principal is involved and actually KNOWS my kid. He is thriving in our neighborhood school in a typical Kindergarten classroom. This is how mainstreaming a deaf kid should work. I really hope that we can keep this momentum going. [IMG_2836.jpg] Aquarium fun over spring break. I love how he still looks little in this picture. at 4/05/2013 3 comments: Links to this post Tuesday, March 12, 2013 Spinning.... Christian's been bilateral for almost a year. The series of mapping appointments we've had over the past several months have shown that both his right and his left ears are in the 15-20 db range. His right ear speech perception scores are unbelievably amazing in the high 90th percentile. However, even though the audiogram shows his left ear is comparable to the right ear, his speech perception in that ear is in the low 40th percentile. For all the non-CI Mommas and friends reading that, it basically means audiologically he is on track but when we actually evaluate what he IS hearing with just that left ear, we have A LOT of work to do. I was thinking about all this during my spin class today. I was trying to clear my mind, focus on my workout but I just couldn't stop thinking about my Christian. My sweet kid is a hard worker, and out of my two children, he is my pleaser. There's no questioning with Christian. He just DOES. The rehabilitation of his left ear has had it's frustrating moments, and he just carries on. He's patient. He's constant. He keeps hanging on. And quite honestly, he has no idea what's going on when it comes to the left ear. He just knows that he likes having 2 CIs better than 1, BUT he likes the "old ear better than the new ear". I started having one of those bi-monthly pity parties that somehow till creep up half-way through the class and got a bit teary eyed. I found myself asking God why? I was asking God in the middle of a spin class to give me the courage and grace to make the right choices because I was doubting them. I found myself getting overwhelmed and I'm pretty sure today was the first time I ever said a Hail Mary with cycling shoes on. I've had a hard couple of weeks, and this is just the icing on the cake and I'm trying really hard to keep this in perspective. I knew that this wasn't going to be easy, and to many my journey IS a piece of cake. We're just going to buckle down, keep isolating that left ear, work a bit harder, and try not to breakdown during my BodyPump class tomorrow. at 3/12/2013 2 comments: Links to this post Thursday, February 28, 2013 Report Card. Two Words: HE ROCKS. Along with all "Ps" (we have a new grading system in our county) that denotes that he "Meets the grade-level standard by demonstrating proficiency of the content or processes for the Measurement Topic), Christian completely rocked out his reading. [photo.JPG] That little dot notes where he is, and the black shaded area is where he is expected to be. So, the second marking period of Kindergarten, he is reading at the expected 1st Grade level. This is my little boy, who happens to have bilateral cochlear implants, who is in a class with 22 other kids in a TYPICAL public school classroom with NO visual support, with NO FM system. He is the only kid with hearing loss in his grade and the only child with Cochlear Implants in a school with close to 500 kids. This is my little boy, who also was in school since he was 18 months old, who was enrolled in an amazing program for 5 years that put him with typically hearing peers so he could LEARN language from them. This is my little boy who since age 2 has been advocating for himself, who gets tired faster than any other kid in his class because according to him "Listening is hard work, Mom". This IS my little boy. He is TOTALLY rocking it. at 2/28/2013 2 comments: Links to this post Friday, February 8, 2013 6 years old. [-1.jpg] This post is 5 days overdue thanks to our internet being down in our house. Thanks Verizon. It's hard to believe that was me 6 years ago. I found this picture going through my digital files and had a wave of both sadness and joy come over me at the same time. Oh those sweet moments with your first newborn baby. The cuddles outweigh the sleepless nights (look how tired I am in that picture). The excitement clouds the complete terror of having a new baby and being a new Mom. I so loved those first few weeks with my sweet new boy. It was cold and we hibernated. I nursed him covered with a fleece blanket as friends stopped by for tea and my parents did our wash. I was learning to be a Mom and it was so new. The "me" in that picture was still innocent. Hearing loss, deafness, IEPs, urgeries, Cochlear Implants, private schools, speech perception testing and inclusion meant nothing to me. That "me" in the picture had no idea what I was in for. And it would take another 9 months for me to get there. I see that girl with her sleep-deprived eyes yet peaceful smile and I am thankful for the time that I had when I was clueless. I've spent YEARS being angry at myself for not knowing it all in the beginning, questioning how much was lost during those months when my little boy had no sound. Wasn't it MY job as HIS Mother to know? How could I have let that happen to my boy? What did I do wrong? Yet now when I look at this picture and I see that girl who is just so at peace with this perfect little human I'm over it. I did the best that I could do with what I had and enjoyed my new baby like any other new Mom. Even if it was just for a couple of months, I was innocent. 6 years old. Happy Birthday to my little man. You find time to cuddle me in between your sports practices and Lego building sessions. You are a good friend and a fantastic student. You are silly. You are sweet. You use words like "photosynthesis" and track hockey game scores and love your sister like no other. I adore you. I love you. I'm proud to be your Mommy. [IMG_2447.JPG] at 2/08/2013 No comments: Links to this post Monday, January 28, 2013 Happy Birthday Lily Grace [IMG_1757.JPG] of this sweet girl, but can't!* My baby is 4 years old today. What a blessing she is to our family. I always believed that she came at just the right moment, even though at the time I thought we'd be in over our head. I found out we were pregnant with her on the day of Christian's first Cochlear Implant activation. He was just under 16 months old, and we were in the thick of it. I was constantly overwhelmed, I had no idea what I was doing with a toddler, let alone a deaf one, and I was exhausted. All the time. And we were going to have another one?! What the heck were we thinking. I was convinced I'd drown. And the total opposite happened when she came along. Liliana Grace, sweet Lily Grace lifted us all up with her sweet face, and million dollar smile. Over the past 4 years she's been our saving grace. Her humor, her spunk, her little bit of sugar and a whole heck-of-alot of spice are my treasures. She is my reality check and my comic relief. On days when I'm up to my ears in IEP edits, lacrosse camps, and CI coils, she pulls me to her room for an impromptu tea party with her bitty baby and girls. She is full of magic. She is her brother's best friend. At almost exactly 2 years apart, she loves him like no other. He takes her sass and she his rules. They are just perfect together. Happy 4th Birthday Sweet Baby Girl. You are simply amazing. at 1/28/2013 No comments: Links to this post Monday, January 21, 2013 Learning to Listen Just after Christian's first Cochlear Implant activation (almost 5 years ago...wow....) my life was consumed by teaching him to "LEARN TO LISTEN". I lived my life as his Mother creating language opportunities knowing that Christian's deafness had NOTHING to do with the softness or loudness of a sound but rather to give him the tools to apply MEANING to what he was hearing. Do you hear that? I heard that sound! That's an owl. Who, Who....yes, Who! You're right! Swoosh, goes the basketball in the net. Chop, chop, Mommy's chopping. Then, almost magically....sounds had meaning. I mean, I know it wasn't magic. Christian's brain learned to take the SWOOSH of a basketball through the net and interpret that as a meaningful sound. He figured out that the squeaks in his ear were shoes on a hardwood floor in his chool. The rumble he heard faintly through the windows were OBVIOUSLY airplanes flying in the distance. He stopped asking me "WHAT'S THAT?". As he grew, it just clicked. Honestly, at almost 5 years post his first activation and one year after his second implant the days of me teaching him a sound and what the meaning was are almost gone. And then we took him to the Verizon Center to see his beloved Capitals practice during Fan Appreciation Night. My little sports nut, who watches SportsCenter with the fervor and appreciation of a college kid, was thrilled to see his heroes shoot the puck around. I took him down to the very front, and watched my sweet boy who is growing so fast, bang on the glass and chant "LET'S GO CAPS". With my hands on his shoulders, I followed the puck with him. Even with thousands of people, the rink did eventually have a calm quiet about it. With the sounds of pucks hitting the boards echoing throughout the building, my almost 6 year old turned to me and said "Mom, what's that sound?" "Oh sweetie, that's just the sound of the pucks hitting the---" "No, Mom....no not that the "psshhh, pshhh" I had one of those world-stopping moments right then and there when I realized that Christian was hearing the sound of the blades slicing through the ice as the players skated around. I realized that he was hearing the sound of MY past. I grew up in an ice rink as a competitive figure skater and the sound of my blades cutting through cold and hard 6am morning ice is still forever engrained in my heart. It is a sound of comfort and of peace. With tears in my ice I told him that was the sound of the blades cutting through the ice. And that if he listens, he can even hear when the players use their edges to stop. "Oh, ok...that's cool." Yes, my amazing little boy...it is SO VERY COOL. And just like that, I realized that my job isn't quite done. My little boy, who can tell the difference between a french horn and a trumpet by ound, is STILL learning to interpret the meaning of sounds. [IMG_2410.jpg] Check out his handmade rally sign! [IMG_2421.jpg] Right-up on the glass! [IMG_2428.jpg] Alex Ovechkin! [IMG_2401.jpg] [IMG_2430.JPG] What a happy boy! at 1/21/2013 No comments: Links to this post Monday, December 31, 2012 2012 from a Blog Slacker's View I've been a blog slacker. Life is crazed, and quite honestly 2012 was NOT my year in regards to time management. Last January, my New Year's Resolution was to take a step back and peel back my time commitments and focus on what was important: My family, my faith, and my friends. In April Christian went bilateral, and I had to throw that resolution out the window. Intensive rehabilitation was back on our family calendar. The transition to a new school, meant more meetings and more tress. I thought that I would have MORE time starting in September with Christian being closer to home for school and Lily in school one more day a week. Instead my days went by faster, and my nights became longer as I attempted to squeeze everything in. I tried so hard to juggle it all, and quite honestly, I really think I did a horrible job. Yet when I look back at this year, and I see all that it brought to our family and to me as a wife, mother, and friend, maybe my resolution DID work. I took the few minutes I had in between work, carpool and volunteer commitments to be silly with my daughter. I made sure that for every minute I spent working with Christian on his new CI that we pent 2 being playing Legos together. I may not have had the most creative and Pinterest inspired dinners on the table when my sweet husband would come home, but I made sure to give him some much deserved time and attention when he came home from work. I committed time to my faith and ministered to the women in my parish community and felt myself getting closer to the Lord every week. And I really feel that I gave my beautiful friends who truly are such gifts, the love and attention that they so truly deserve. While I didn't gain the extra time I thought I was going to get, I became more conscious of the time that I DID have. I treasured it. I cherished it. I guess I'm no longer a rookie, and really should just expect that every year as the kids get older, things get trickier, time disappears, and things will just get HARDER. Sometimes life throws you a curve ball (like going bilateral) and you have to adjust. If 2012 taught me anything, it's to be ready for the unknown. Luckily, I have my faith, family and friends to rely on. 2012 Highlights [recovery8.jpg] Bilateral Boy [photo-5.JPG] Cherishing this time... [DSC_0600.jpg] 2012 was the year of ballet for Beanie [DSC_0035.jpg] And Tae Kwon Do for Buster [DSC_0058.JPG] We visited Aunt Ali and Uncle Bu many weekends. [IMG_1356.jpg] And spent them with Uncle Dave and Aunt Alison too! [IMG_1359.jpg] Josie and Lily were our comic relief on those hot DC summer days. [IMG_1390.JPG] And we cooled off Up North with Nana and Papa. [IMG_0035.JPG] Lucky. [DSC_0487.jpg] Aunt Sarah and Uncle Nick time is the best! [IMG_1553.JPG] Cocktailing it in NC. [IMG_1575.jpg] Spending time with our cousins! [IMG_1578.jpg] Visiting with Uncle Art and Aunt Mary! [IMG_1579.jpg] Wishing we lived closer... [IMG_1592.JPG] Lazy and fun days at the pool...ok, who am I kidding. Tiring and ometimes annoying days at our pool. But the kids had fun together. [IMG_1611.jpg] A lucky little boy to have a friend like Justy! [IMG_1614.jpg] Silly friends! [IMG_1618.JPG] Again, Josie provided Comic Relief. [IMG_1622.JPG] And Willis and Jack did too! [DSC_1085.JPG] Laughing with Papa! [DSC_0774.jpg] First day of school! [DSC_0807.jpg] [DSC_0824.jpg] Lacrosse fun! [DSC_1063.jpg] Halloween--first year they didn't have "joint" costumes. My boxer and Marina from The Fresh Beat Band! [IMG_1637.JPG] Labor Day fun in our little town! [IMG_1671.JPG] I still need my Dad! [IMG_1682.JPG] How cute are they?! [IMG_1701.JPG] Best Friends! [IMG_1747.JPG] So lucky to have these girls. [IMG_1749.jpg] This is what we do on Tuesdays. [IMG_1797.JPG] Daddy's birthday [IMG_1798.jpg] And a shot of what I look like 10 hours a day. In the car. [IMG_1825.JPG] Football fun! [IMG_1831.jpg] Love my Belle! [IMG_1832.JPG] My loves. [IMG_1961.jpg] Crazy family times! [IMG_2006.JPG] It's fun to have a friend almost as crazy as you are. And who loves wine more than you. [IMG_2012.JPG] They're getting old. [IMG_2024.JPG] Daddy cuddles. [IMG_2040.JPG] So lucky to be able to spend time at home and watch my lovey and her friends grow! [IMG_2042.JPG] Nutcracker with my baby angel. Not going to lie, I cried. [IMG_2043.JPG] Spending the morning with our besties was SO fun! [IMG_2057.jpg] Thursdays. [IMG_2097.JPG] THE BEST. [IMG_2143.jpg] Makes me so happy! [IMG_2208.jpg] My Shepard! [DSC_0122.JPG] When some of your best friends happen to live on your street...you're a lucky girl! at 12/31/2012 3 comments: Links to this post Older Posts Home Subscribe to: Posts (Atom) [ShabbyBlogsCrazyLife.jpg] My Photo Christian and Lily's Mommy I'm a 30something Mom to my two beautiful children, Christian (6), and Liliana Grace (4) Christian was born Deaf, and was implanted with his Cochlear Implant at 14 months of age and his econd at 5 years old. Lily is hearing, and is a handful but a joy in everyway! When I'm not shuttling my kids back and forth from playdates, therapy appointments, school, and Target (we're ALWAYS THERE!), I'm advocating for my son, and all children with hearing loss. View my complete profile Resources Turning Back Time [Turning Back Time] Popular Posts River School. Visitors [s-event.png] [3971] Check out 5 Minutes for Mom WAHM Directory Search My Blog Loading... FEEDJIT Live Traffic Feed Feedjit Live Blog Stats Simple template. Powered by Blogger. heart. speak with love. - RSS listen with your heart. speak with love. Our Family's Cochlear Implant Journey Tuesday, October 30, 2012 Perspective and Resolution "Life has to be what we make of the cards we have been dealt" As a Mom to a deaf child not a day goes by where I don't pray for my on to have courage and grace to deal with his hearing loss. I'm lucky that our family has a wonderful role model for that grace and courage. Check out my dear friend Jenny's article recently published in the online magazine MobileWomen.org. She's a bit of a rock-star in my book. at 10/30/2012 No comments: Links to this post Monday, October 29, 2012 Thanks to Hurricane Sandy, our Halloween plans are uncertain. In the meantime, I had to share some preview pictures of Marina from The Fresh Beat Band and my Championship Boxer. [DSC_1049.jpg] Her dream come true. At 3.5 years old, all she wants to be is "A rockstar just like Marina". [DSC_1042.jpg] Her Rock Star Jacket! [DSC_1059.jpg] He wants a black eye for Halloween too [DSC_1092.jpg] [DSC_1095.JPG] Halloween best buds--Christian and Captain Rex Jack. Nothing better than 5.5 year old boys and Halloween. at 10/29/2012 No comments: Links to this post Tuesday, October 16, 2012 Whatcha been up to? Why does it feel like Fall goes by so fast? Life is fun...but crazed. [s_2086.jpg] We've tried to jazz up our spread this year. Love the WWP Pink and Green. This is what I do on Monday mornings. I lead an amazing group, have a beautiful co-leader, and feel so lucky to minister. No better way to tart the week. [s_2087.jpg] Officially a Green Belt We hit Tai Kwon Do 2 times a week where my little man is rocking. He has a blast with his best buds Dylan and Jack and Lily is on baby duty watching everyone's little siblings. Yes, a 3.5 year old can be a babysitter! [s_2088.jpg] Our drop-off and pick-up schedule is crazed with 2 kids in 2 different places. We have a great carpool on Monday/Wednesday/Friday. Tuesdays are pretty much the only day that they are together in the morning. The morning time on the way to school is precious. They have little conversations and take care of each other. It is beyond sweet. [s_2089.jpg] Saturday mornings are lacrosse. Chuck coaches, I usually stay home with Lily or head to the gym. Or host a leadership team meeting...or work. What happened to lazy Saturday mornings and brunch in Georgetown? [s_2090.jpg] All work and carpool is no fun so we do find time to play with our dearest friends. I love how we all have the same taste...and the same tationer. [s_2092.jpg] Not sure what I would do without these girls. We do clean up nice, don't we? [IMG_1749.jpg] Sometimes God brings people into our lives for very special reasons. [IMG_1751.JPG] Love having birthday celebrations with one of my besties. [s_2093.jpg] Mondays are time with Miss W. at our old school. The work he accomplishes takes my breath away. She is just fantastic. [s_2094.jpg] We spent the weekend with Aunt Ali and Uncle Bu for her baby shower we hosted. The kids keep asking when the baby is going to pop out. Lily has named her Alexa. We'll see... [s_2095.jpg] I'm trying so hard to just cherish these Preschool days with my Lily girl. The days go by too fast. [s_2096.jpg] This is my carpool home from school. How can you not smile? They eriously make me belly laugh. [s_2097.jpg] We celebrated Chuck's birthday with a delicious Key Lime Pie from our favorite bakery! [s_2098.jpg] I thought this was hilarious...somehow my phone took this picture of me while I was on Wisconsin Ave. This is what I do. Everyday. All day. I'm either on my way to or from school, the gym, or errands. Or my mobile office at Panera. It's a pretty good snapshot of my life right now. At least now I know I looked pretty ticked off when I drive. I must've been in traffic. And now I'm worried my iPhone is dying. Oh well. [s_2099.jpg] Leaf hunts with my baby girl on the way to get Christian. It got chilly for a day and we're back in shorts. [s_2100.jpg] She loved this one. [s_2101.jpg] He dresses himself each morning. This is is favorite outfit. Maryland pride lacrosse shorts and a skeleton shirt. Classic Christian. [s_2102.jpg] Nana and Papa sent a carmel apple kit that was too cute for words. The box is now a coffin for Christian's bear. I also was told that Tigger is now a vampire. [s_2103.jpg] We supported our school's art integration program by going to a PTA dinner at the diner. I had no idea you could get wine at a diner. It was pretty awesome. [s_2104.jpg] Lily hasn't napped for a year and a half, but she will always pass out in the car. He grabbed her hand and they road into downtown DC like this. So sweet. [s_2107.jpg] Playing football and tackling the big kids. He is so lucky that Chase didn't body slam him back. [s_2108.jpg] Just strolling through Capitol Hill during a Saturday outing for our family friend's birthday. [s_2109.jpg] Christian found the GREAT PUMPKIN downtown. He loved it. [s_2110.jpg] October is the month of birthdays. Happy Birthday beautiful girls! [s_2111.jpg] 3 Moms, 10 kids, and margaritas. Great Saturday night with dearest of friends. [s_2112.jpg] We hit up our Volunteer Fire House for their Open House. Jack and Christian have been obsessed with fire trucks since they were both 2 years old. They are still obsessed. [s_2113.jpg] Christian is on day 2 of no school due to a nasty virus. He's watched about 20 hours of Cartoon Network. Poor kid... at 10/16/2012 2 comments: Links to this post Monday, October 15, 2012 those eyes As my morning prayer group was winding down I got a call from our chool nurse. Christian had a 103 fever. Sweet boy. He's in PJs, has tiggs, bunny, and Cartoon Network. Feel better baby boy! [s_2064.jpg] at 10/15/2012 No comments: Links to this post Saturday, September 29, 2012 A little tune up. We are incredibly fortunate to have an AMAZING audiologist who has taken the time to really get to KNOW Christian and his capabilities. She is based at Christian's old school, but we are still able to get ervices through her now that we have moved on. I am thankful that we till have her on our team. Christian and Dr. V got straight to work on Wednesday for his mapping appointment. We concentrated solely on his newly implanted ear . Christian patiently did all of the testing and waiting as each electrode was manipulated. [IMG_1712.JPG] [IMG_1713.JPG] [IMG_1714.JPG] [IMG_1715.JPG] 5 1/2 years into this and I am still amazed. Watching the programming process of my kid's Cochlear Implants literally takes my breath away each time. If you haven't been through it, you really don't know how hard the kiddos have to work, or how much harder the audiology team has to. As much as it is a science, it's also an art. The fact that our audiologist knows Christian's academic trengths and challenges alone helps ensure a quality MAP. And she is SO good with little ones. Few audiologists have the patience or the enthusiasm to handle 5 year old boys. Yet Dr. V always manages to reign him in, to get him to listen and she somehow makes these marathon programming sessions FUN for my little dude. at 9/29/2012 2 comments: Links to this post Monday, September 24, 2012 (insert mommy guilt here) Lily was cranky pretty much all day. Fussy in the morning, pouty at chool, and then at Noon when I got her....just a mess. She was full of ass. She was being fresh. She spent the better part of the afternoon being annoyed about schlepping to Christian's aural-rehab appointment, yelling at me from the car seat and telling me I was a bad Mommy. I flipped out at her around 6:45. And at 7:20, she pooped on the floor. Like a bad poop. Like yucky tummy poop. Poor thing was just sick today. And me, being sick of the fussing didn't even notice. I've been so wrapped up in everything but her today that I didn't notice that she wasn't feeling that great. Guess who did though? Christian shows so much patience with his little sis. Even today when he was literally rolling on his floor crying before dinner he just aid "Bean, stop. You need to just rest, ok?". So, I'm sitting here waiting to see if this goes on for the rest of the night or if we're one and done. I'm not feeling that great right now either. What a way to start a week. at 9/24/2012 No comments: Links to this post Thursday, September 20, 2012 Ok, I need a glass of wine. Christian's teacher stopped me during the chaos of pick-up today and briefly chatted to me about Listening Centers and headphones. They tried it out and for obvious reasons he had a bit of a hard time using the standard issue headphones. She's saying all this to me in a complete ZOO of kids and parents picking up and I swear I zoned out, nodded a bit and started having one of my freak out moments where I totally say the right thing and smile and nod but my brain is really just spinning out of control and I'm about to lose my shit (sorry Mom, I know you read this, but it's true. I totally lose my shit) only to be rescued by a distraction usually in the form of a 3 year old having some sort of drama or disaster. I then forget I'm freaking out until 10pm at night. Which is why I'm freaking out right now. I don't know why. If we get him bigger headphones or use his Personal Audio Cable he will be fine. Just a little accommodation that I didn't anticipate but we'll figure out. I just sent an email to his classroom teacher and our D/HOH teacher to discuss this and everything should be fine. Right? My friend told me that the 3 week mark of school is usually where all hell breaks loose. Christian has been a bit off this week. He's a bit cranky, a bit emotional and a WHOLE heck of a lot tired. I'm a bit cranky, a bit emotional and SERIOUSLY tired. I'm now wondering what OTHER things did I fail to anticipate? I am SO ready for the weekend. I need a break. at 9/20/2012 No comments: Links to this post Tuesday, September 11, 2012 Perfection. My college roomie and closest friend is pregnant with her first child and I've been working on putting together THE PERFECT shower for her. Although, we're trying to not call it a shower because it's really just a nice gathering for girlfriends and she really isn't a jordan almond and diaper cake kind-of girl. She loves the Yankees. She curses more than any one I know. She's this powerful woman who is totally melting at the thought of having A GIRL! I love hearing her perspective on her first pregnancy. I love listening to her recount all the details about her doctors appointments, her registry, and her nursery. I just love the excitement. It completely warms my heart for so many reasons. I want to give her a beautiful day. I want it to be perfect. [DSC_0058.JPG] She's going to be an amazing Mom. I remember being pregnant with Christian like it was yesterday...funny how my pregnancy with Lily was a blur. I'm pretty sure I spent most of it in the carpool line at Christian's school. I remember planning his color scheme for his room, picking out the cutest little rugby shirts at Baby Gap, and doodling variations of his name on countless legal pads at work. I had this easy and uneventful pregnancy and I was certain that my little boy, who always measured big and robust and who even was born healthy, was just as perfect as could be. [230239_5897756081_581616081_256100_6689_n.jpg] Dreaming of my perfect baby. Photo by Galhouse Photography. And then this weird motherly instinct prompted me to bang pots and pans over his head when he was sound asleep in his bassinet because omething just seemed OFF. And from that moment on, my idea of perfection was completely shattered and reworked. I've learned over these past 5.5 years that perfection really is in the eye of the beholder. I've also learned thanks to a dear friend who happens to be a paraplegic and a Mom of 2 how to embrace a perfectly imperfect life and own it and love it and make it YOUR dream. Having a deaf kid was certainly NOT in my game plan. I'm not going to sugar coat any of this and say "Oh, it's such a blessing having a SPECIAL kid". It's hard. It's REALLY REALLY hard. Not a day goes by where I don't pray for Christian to have courage and perseverance to deal with the adversity he faces everyday...even though he doesn't know he's really facing anything. But, then I also lift up prayers of thanksgiving for all the little things that this experience has given our family. It's taught us patience. It's taught us to value every word as a gift---even to this day when words such as BUTT and POOP SNACK are being tossed around in a very Kindergarten appropriate way. It's given me as a mother the opportunity to really stretch my wings and be a mentor to other families who are facing similar challenges. Most of all, Christian has broken down barriers and stereotypes already in the short 5.5 years that he's been here. I love just seeing all the little blessings that have come out of this little imperfection. [DSC_0725.jpg] If this isn't perfect, I don't know what is. [n581616081_1139520_5498.jpg] Perfectly Imperfect. at 9/11/2012 3 comments: Links to this post Wednesday, September 5, 2012 Turn this into a Country Song. Today was one of those days where literally nothing went as planned. Lily had one of her nights and we were up and down with her all night. I woke up to an email from our Deaf and Hard of Hearing department informing me that the itinerant teacher that was hired to service Christian decided to NOT take the job. I went to Target, dug through my bag at the check-out with a FULL CART, and found out that I left my wallet at home. Awesome. Drove all the way back, paid, raced home in time for a meeting, only to discover I bought DECAF coffee. DECAF. My laundry sink is leaking, oh and I've had unexplained pain in my abdomen that is now resulting in a series of doctors appointments, lost gym time and lots of wincing on my part. Awesome. I'm thankful for my Mom who is checking in on me and my girlfriends who always seem to know how to rescue me with reassurance, carpool and taking a feisty 3 year old off my hands. Oh...and everyone pray for Chuck. He's got a lot on his hands dealing with me these days. at 9/05/2012 2 comments: Links to this post Wednesday, August 29, 2012 And....we're off! These first couple of days of school have been a complete whirlwind and we're still trying to figure out our schedule. We all have new routines to get used to. All in all, these past 2 days have gone SUPER SMOOTH! Our neighbors met us to make Christian's first walk and my heart was so full watching Christian walk with his big-kid friends (and having my weet and loving neighbors to support us there!). My one girlfriend joked that she thought they would have to follow me up with a car to drive me back the 2 blocks because I was going to be a mess. Luckily for them, I cried all my tears the night before and I just got a little misty-eyed as we left our little dude in the hallway as HE WAS COMFORTING A NEW FRIEND WHO WAS CRYING. Seriously...he did that. I spent the day wondering what he was doing, praying he was elf-advocating for himself, hoping he was making new friends, and getting a bit nervous for his first recess at the big school. I think I had a pit in my stomach the entire day...but I didn't cry. At pick-up (which is INSANE BY THE WAY...more on that later), he ran out of the school beaming telling me "Mom, it was SO MUCH FUN!". I grinned, and once again got a little bit misty-eyed. We've walked to and from school with friends these past two days, exploring our neighborhood and having some popsicles and drinks once we get home. I've heard stories about meeting new friends on the playground, playing with old ones, and also about how he got to "Explain to his friends what a trombone sounds like" in music class. Love. I'm so proud of him and I just love how can jump into new situations with ease. [DSC_0759.jpg] My big boy! [DSC_0762.jpg] So grown-up! [DSC_0771.jpg] She misses him like crazy. [DSC_0778.jpg] Loves his back pack! at 8/29/2012 No comments: Links to this post Sunday, August 26, 2012 'Twas the Night Before Kindergarten [nightbeforekindergarten.jpg] Tucked in with Tiggs, Bunny and Whiskey Dog...ready for his big day tomorrow! We began this journey with one goal in mind: Get Christian to his neighborhood or parish school for Kindergarten. Get him TOTALLY mainstreamed. At times we took baby steps, with careful consideration of articulation goals and therapy plans. And at other times, we took giant leaps...like this past Spring when we decided to go bilateral and get his other ear implanted. All along the way, Christian took each step in great wonder. He embraced the moment, challenged his little body and big heart. He worked hard. REALLY HARD. We landed in the most perfect environment for a kid with hearing loss where he was nurtured and embraced at the same time as being taught to persevere and to press-on. He grew into an articulate, confident, sweet, silly, loving and incredibly smart little guy who just happens to use Cochlear Implants to listen and speak. I've said it before, and I will say it again, and again, and AGAIN--The best thing we ever did was give Christian the opportunity to learn side-by-side with typically hearing peers during his preschool years at The River School. He's so ready for this. 5 years later here we are. The night before Kindergarten. In our neighborhood school, where he will be taught side-by-side with 21 peers, all who are hearing. He will be in the classroom totally independently, utilizing his self-advocacy skills that have flourished over the past two years. His backpack is ready, his lunch is packed, and he picked out a collared shirt with a shark on it to wear tomorrow. He's SO ready for this. I'm not worried about the typical Kindergarten worries. He is super ocial. He can navigate different situations with ease, has great conflict management, and he is just a confident little dude. Logistically, this year is going to be a bit EASIER! He's around the corner from me, as opposed to 40 minutes in traffic away from me. We get an extra hour in the morning together since we have no commute (we walk 1.5 blocks). He's been in a 5-day full day program for several years, so I know he can handle it. Now me on the other hand, not sure. I'm a ball of anxiety with this transition hiding it from him, but running to my friends and neighbors for pep talks and red wine. Am I ready for this? This is what we've dreamt of, and this is has always been our family goal. It's happening. It is ALL happening. at 8/26/2012 2 comments: Links to this post Friday, August 24, 2012 Last Lazy Summer Morning Today is the LAST day of summer vacation. As I type this (it's 9am in the morning by the way) the kids are laying on the playroom floor watching Little Bill. After lunch we head over to Christian's NEW SCHOOL to meet his NEW Kindergarten teacher. Gulp. And after that I'm heading over to my girlfriend's house for wine. Yes, we'll probably be opening a bottle before 5pm and no I'm not ashamed. I look at Christian these days and he just seems *OLDER*. He has a new look. It's a little mischievous mixed with sweet. His face has gotten longer, he's gotten taller, and he just carries himself like an older kid. At the same time, he's still my angel. He snuggles and cuddles and plants kisses on me just because. He's been a bit sensitive these past few days, and I'm thinking he's a got a little bit of anxiety mixed with a whole lot of excitement in anticipation of the change coming up. I'm pretty sure that this entire Summer Lily has been exhausted. The child plays until she collapses. She no longer naps, swims for hours at end and has told me several times "I don't want to get bigger". As much as I ask her to be my big girl, she still really is my baby. Every morning I hear her little door creak open and she comes into my bed to cuddle. She is a little girl with BIG emotions and an even BIGGER heart. It's been a great summer full of sandy toes from the beach and wet towels from the pool. As much as I'm ready for the routine of fall, I'm going to miss these lazy summer mornings. Some of my favorite summer moments as captured by my iPhone! [IMG_1310.JPG] Fun afternoons at our pool! [IMG_1338.jpg] Raft Night with Friends! [IMG_1356.jpg] 4th of July with Uncle Dave! [IMG_1359.jpg] Beating the heat in a bucket! [IMG_1377.JPG] Christian lost 2 teeth this summer! [IMG_1378.jpg] Ice Cream with Cousin Jeff in Michigan! [IMG_1381.JPG] Lake Michigan Sunsets. [IMG_1400.jpg] Sand Castles in Elk Rapids. [IMG_1431.JPG] Floating down the river Up North! [IMG_1439.JPG] Date Night Up North at Short's Brewery! [IMG_1506.JPG] He makes me coffee now. [IMG_1510.JPG] Minnows from the trap at The Bay! [IMG_1519.jpg] She won't nap, but she will "Rest" in my bed with Sammy girl! [IMG_1541.JPG] North Carolina Ocean Fun! [IMG_1553.JPG] Cocktails with my babies in Morehead City. [IMG_1572.JPG] Hot Tubbing with Cousins. [IMG_1585.jpg] Pool Drinks with my girls at 8/24/2012 No comments: Links to this post Newer Posts Older Posts Home Subscribe to: Posts (Atom) [ShabbyBlogsCrazyLife.jpg] My Photo Christian and Lily's Mommy I'm a 30something Mom to my two beautiful children, Christian (6), and Liliana Grace (4) Christian was born Deaf, and was implanted with his Cochlear Implant at 14 months of age and his econd at 5 years old. Lily is hearing, and is a handful but a joy in everyway! When I'm not shuttling my kids back and forth from playdates, therapy appointments, school, and Target (we're ALWAYS THERE!), I'm advocating for my son, and all children with hearing loss. View my complete profile Resources Turning Back Time [Turning Back Time] Popular Posts River School. Visitors [s-event.png] [3971] Check out 5 Minutes for Mom WAHM Directory Search My Blog Loading... FEEDJIT Live Traffic Feed Feedjit Live Blog Stats Simple template. Powered by Blogger. heart. speak with love. - RSS listen with your heart. speak with love. Our Family's Cochlear Implant Journey Thursday, August 16, 2012 Game Plan We have a bit over a week until Christian starts Kindergarten. And I'm anxiously awaiting both a classroom teach assignment and our itinerant teacher assignment. We've got the new backpack, new shoes, and the IEP is in place. Here's some other Back-to-School things I have planned to ease the transition regarding Christian's hearing loss: -Conduct joint-meeting with our in-class teacher and itinerant to give background and go over specific proven strategies for Christian. -Present in-class teacher with a prep-kit that includes an adaptation of these cards that AG Bell has developed, as well as Tips for Teachers (page 7) from this Cochlear Americas resource. (Check below for our version of the prep sheet) -Continue auditory rehabilitation on newly implanted ear with our fantastic private SLP through the fall. -Conduct programming and MAPping appointment the 3rd week of school with our equally fantastic private audiologist. I'm also packing up his little backpack kit with his extra batteries, battery covers, and tape and trying to figure out a way to keep it safe and snug but also accessible in his new backpack. He's going to be great, and we absolutely are confident in our school. But, I'm his Mom. And it's my job to worry. Prep-Sheet Text As you may know, our son Christian has an Individualized Education Program (IEP) due to his hearing loss. If you have not received a copy of Christian’s IEP, please see the principal for a copy, and discuss with her how to best ensure the agreed upon goals are met. While the IEP outlines Christian’s formal educational goals, we wanted to share uggestions that will help us succeed together from day one. Please keep in mind that cochlear implants (CIs) do not “fix” hearing, like glasses fix poor vision. Christian’s cochlear implants help enhance his hearing, but additional assistance is still needed. We’ve listed ome strategies below that help Christian to better understand conversations and classroom lessons. We are looking forward to a uccessful year working with you. It helps Christian when: Ø Classroom directions are repeated. It’s easy for Christian to miss things that are said quickly and it is important that he not fall behind or appear to be misbehaving by not following directions. Ø People speak clearly and he’s able to see their faces. Please try not to cover your mouth with paper or books, or talk with your back towards the class. Ø He doesn’t stand out amongst his classmates. If you are concerned he missed something you have said, please check with him in a subtle way. Ø He is able to sit close to the point of instruction whenever possible, whether it is you, videos or other activities. Ø The whole class understands that it’s important to speak clearly and one at a time. Directions and assignments are available in writing. Ø He is able to share or compare notes with a classmate or you, as appropriate. Ø He is able to anticipate the schedule and is alerted of any changes in routine. Visual schedules are a great tool for Christian. Technology Tips Ø Christian’s Cochlear Implants help him hear much better, but he doesn’t always understand what he hears especially if the room is noisy or if people talk too fast and on top of each other. Ø We are happy to talk with you about Christian’s Cochlear Implants. We will feel better knowing that you understand how his hearing technology works. Ø We plan on keeping a kit of supplies Christian’s backpack that will include extra batteries. We do not anticipate him needing to change his batteries, but it may happen. He will do his best to do so in a quick and timely manner, but please do allow him time to troubleshoot. He can’t hear without his CIs. Ø Christian’s kit will also contain extra tape strips that he uses to help adhere his CIs behind his ears. He may need to change the tape after gym or recess when he is sweaty, so please help remind him to check to see if his CIs are staying on ok. Please remind him to check if his CIs are ok before and after playground. Ø Christian has a remote control that he uses to change the settings of his Cochlear Implants. Please allow him to keep this remote in his backpack and to be able to readily access it during times of transition. We anticipate that he will want to change his program before going into the noisy lunchroom. Please allow him time to do this. Ø Christian’s CIs and remote cannot get wet. If a water activity is planned, please call us to make arrangements. Ø Please ensure that NO other students touch his CIs or remote. at 8/16/2012 No comments: Links to this post Wednesday, August 15, 2012 Calendar Anxiety Does anyone else have heart palpitations when you change out your family's dry-erase calendar in the kitchen from one month to the next? What about when you start the "Repeat Every Week" function in your iCalendar so when you open up your iPad your entire schedule looks like an Impressionist painting with all those little dots? I officially have calendar anxiety. Christian starts school in less than 2 weeks. Yay! After school activities, auditory training (maybe, more on that later...I don't know?), and the complete insanity of our family's fall chedule also starts in less than 2 weeks. Yay? Wasn't I JUST begging for the "routine" of fall? Much like the rest of the Moms of the world, I am now taking on the task of manage our calendar. Webbing together delicate carpools with trusted friends, trying to be in 2 places at once every morning, AND making sure that EVERYONE (Chuck and myself included) has THEIR TIME. I mean, a guy HAS to make his fantasy football draft party. We do have priorities. So here I sit, plugging in lacrosse, which has then reminded me that this year our little guy needs a cup. Yes, a little boy cup to protect his family jewels. So that goes on my "Supply" list. Tai Kwon Do is our constant, we're still doing that 2 days a week, but I have to make sure we get a good carpool going for that. Soccer? Or Baseball? Soccer is out. It's the same time as Lily's ballet...which reminds me, add tights and possibly new shoes on the "Supply" list. Baseball? Who is doing baseball? Do I have to be there? Is there a date for that? And what about auditory therapy? When is that? I guess it has to be on a Tuesday, since Mondays and Wednesday are martial arts, Thursdays are ballet and Fridays, well aren't Fridays our days to just sit on our neighbors and best friends' decks and just watch the kids go wild while we drink red wine? Saturday mornings are Lacrosse, Sundays are CCD. I'm one of the crazies that keeps a paper calendar, which I then cross-reference in my iCalendar, which is synced on my iPhone and iPad, which I then transfer EVERYTHING to our master family white-board calendar. I'm staring at every single weekend from Labor Day through November 3rd being completely booked. It's only going to get worse. They are still so little. My best friend who has 4 kids has gracefully mastered the art of being in 4 places at once, and I've only seen her lose her cool maybe once or twice (there was a time when we weren't quite sure where her oldest boy was and if he actually made it to the soccer field and if he was going to get a ride home...but it happens). I know I'm a rookie at this. Now....off to planning lunches. Living the dream people, living the dream. at 8/15/2012 No comments: Links to this post Tuesday, July 31, 2012 28 Days and Counting [IMG_1506.JPG] I hope he continues to make me my morning coffee when he's a big tough Kindergartener! I feel like this entire summer we've been counting down to something: Activations, swim lessons, Tae Kwon Do graduations (HE'S A GOLD BELT NOW!!!), our vacation to Michigan, our vacation to North Carolina....everything. Christian's been seriously counting down to the start of his lacrosse season and helping Lily figure out when she gets to start ballet again. Now we're counting down to the start of school. 28 days from today. Which means 28 more consecutive days of anxiety attacks for me. 28 days of me freaking out. I don't think I have the typical "first-time Kindergarten" jitters. He's been in school full-day for 3 years and for all practical purposes, the class he was in last year was a Kindergarten class. He knows how to make new friends, he plays well, he hares, and he's starting to read. Not much to worry about on that front. I have more of the "first-time in a school that he's the only with Cochlear Implants and these teachers have no formal training when it comes to educating my kid" kinda jitters. I thought I was ok, and then BAM. I switched my dry-erase family calendar in the kitchen to August and realized that summer is almost over and this protective little cocoon of easy-breezy days with relatively no worries is just about done. I am anxiously awaiting not only our teacher assignment but also our itinerant assignment. I'm eager to get into the school and do a little bit of in-servicing. We've really been pushing Christian's newly implanted ear with MANY hours of rehab both with his SLP from The River School and with a county SLP. He's made absolutely astounding progress, but is he at the point where he could actually use that left ear alone in a mainstream public school classroom with NO support....um, probably not. Will we get there soon...I REALLY HOPE SO. So here I sit...wine in hand, anxious tummy and racing thoughts nesting of sorts. Binders have been purged and re-organized, hand-outs have been printed, and my poor girlfriends have had their fill of my rants about "Omg, is this really happening? Is he really ready? Are we ready?'. I'm thankful I have them, and I know in 28 days they are the ones who will be reminding me to freak out because he's in KINDERGARTEN not because he's the kid with the CIs in the class. at 7/31/2012 1 comment: Links to this post Smitten with the Mitten We spent a week in Northern Michigan with my family and it was THE PERFECT stress-relief. It's quiet. It's quaint. It's easy for the kids. And it was FAMILY. Seeing the kids experience the joy and wonder up there that I grew-up with was amazing. I wish we could've spent the entire summer there. [DSC_0210.JPG] This is what I call an Up North Sky. [DSC_0233.jpg] Cherry Festival kids! [DSC_0229.jpg] You should've seen her waiving the American Flag....just a little piece of American Pie! [DSC_0303.JPG] Fishtown. So excited to share it with my [DSC_0318.JPG] Love Leland and Love sharing it with Chuck and the kids. [DSC_0488.jpg] Uncle Nick and Aunt Sarah camped overnight on an island in the middle of Lake Michigan! We met them on the docs after their ferry ride home! [DSC_0594.JPG] Bustling BelleAire. [DSC_0597.jpg] Must-Stop for our overnight in town. Love their beer! [DSC_0599.JPG] This is our vacation look. [DSC_0612.JPG] So much fun at Short's! [DSC_0651.JPG] This is what a full day at the lake does to you! [DSC_0656.jpg] Mom and Dad at Towne Club. Something tells me when they move-up to Elk full-time they will be visiting alot! [DSC_0932.JPG] Beautiful Elk Lake at Sunset. [DSC_0913.JPG] A full day in the water with Uncle Nick! So much fun! [DSC_0871.JPG] My lazy little beanie. [DSC_0937.jpg] We're a Spartan family. SPARTY ON PEOPLE! [DSC_0966.JPG] A six-pack of Short's and sunset on a log. Doesn't get any better than this! [IMG_1382.JPG] Found on the first night! [IMG_1381.JPG] Just stunning. [IMG_1384.jpg] My Lake Babies! [IMG_1385.jpg] Last year at this time this sandbar was COMPLETELY covered with water and about 2 feet deep. The kids called it the baby-pool. Now it's their cool "fort". [IMG_1390.JPG] Out to lunch! [IMG_1400.jpg] Lake Girl [IMG_1411.jpg] Regulars. [IMG_1440.JPG] More Short's.... [IMG_1430.JPG] Floating down the river [IMG_1431.JPG] A whole lot of lazy! [IMG_1442.jpg] I have a thing for smoked fish. The best. [IMG_1454.jpg] Lego Carnival in TC! [IMG_1462.jpg] Cherry Festival Parade! Nick Lidstrom was the Grand Marshall! Go Wings! [IMG_1469.jpg] Miss Elk Rapids! [IMG_1482.jpg] Christian loved the MONSTER TRUCK! [IMG_1493.jpg] Visiting with Papa Jim! [IMG_1494.JPG] My Nana is so chic! Look at her! [IMG_1495.JPG] Coney's with Uncle Nick. [IMG_1496.JPG] The girls. [IMG_1499.JPG] One last good night story with Papa. at 7/31/2012 No comments: Links to this post Wednesday, July 25, 2012 Bilateral Bootcamp It's time to get down to business. We returned back from a wonderful vacation to Northern Michigan and jumped right into our 3rd and final programming session at Hopkins. After a quick booth test and some level changes, everything just became brighter and more clear. Christian immediately started responding to complex questions using just his new ear with NO visual cues. Our audiologist had a complete conversation with him while he was just playing with a puzzle and he responded and interacted with no problem at all. Honestly, it never gets old and of course I was teary eyed witnessing not just the miracle of this amazing technology but how hard my little guy works. He's been through so much and just keeps trying and trying. Left ear rehab is intense right now, as it should be. Our family life is literally revolving around getting it up an running. Here's our chedule just for this week: Monday: Meet for 45 minute session with county SLP to work on auditory training 1 hour isolation using just left ear while reading books with Mom and playing listening games Tuesday: 1.5 hour isolation while playing board games with Mom, auditory training and book reading Wednesday: 1 hour isolation isolating the /s/ and /th/ (so hard for him right now!) Thursday: Meet for 1.5 hour session with county SLP Friday: Meet for 1 hour session with private SLP at River School And in between all of this, we're still trying to have a fun summer with trips to the pool, playdates and movie time in the afternoon when it's too hot to go outside. at 7/25/2012 2 comments: Links to this post Friday, June 29, 2012 All I needed to learn about parenting a deaf kid, I learned at The River School. I could take you on the emotional roller coaster that I rode as Christian finished Pre-K and his time at his current school. I could go into the details about my panic that is weirdly coupled with peace. Or how I just looked at friends and faculty on the last day and they met my gaze with tearful eyes as well. There's much more to this than just what went through my heart and head on our last day. So much more. I remember walking into school 5 years ago just praying that he would just "fit" and that he would one day be able to talk and play with typical pears. Christian started school at just under 17 months. He was BARELY walking, toddling really. He was a baby. And I was this new Mom to a little boy who was deaf. I had no idea what I was doing. In addition to obsessing over all the new Mom things that really seem so moot right now, I was overwhelmed and totally overcome by the intensity and scariness of raising a deaf child. I would question myself daily "Is this right?" "Did we make the right choice" Actually, the only thing that I was confident that I was doing right WAS sending him to this school. The years went on and we both learned. Christian grew from a newly implanted toddler to a sweet and chatty 2 year old who was already urpassing his hearing peers in expressive language. I became a little bit less unsure and started taking on more and more ownership of Christian's hearing loss. It became my JOB to advocate and support Christian. I quickly had to learn how to calm my insane case of anxiety when Lily was born, and quietly handle that creepy let-down of not having another deaf child. The receptive language came, and by 3 years old he was a class leader. He thrived being the social yet sensitive friend. Along with ownership of Christian's hearing loss came management, I became engrossed in the advocacy. I researched and interviewed, and took the role on as the "Crazy Mom Who Knows Too Much". I organized fundraisers and connected with the local Deaf community. Finally, despite the intensity, life was getting a little bit easier. I wasn't worrying AS MUCH, and our sweet baby girl was bringing an absolutely delectable amount of joy and blessings into the family. By 4 years, he was amazing everyone. Not only was he doing great things that GREAT typical hearing 4 year old boys should be doing, but he continued to amaze us with his ridiculous ability to gather vocabulary and use it meaningfully. I started panicking again. Worrying about the inevitable time that we would leave the school. I started having dreams of his Cochlear Implant failing during his oral dissertation defense in college. The dream when it happend on his wedding day still sticks with me. I started fixating on all the what-ifs. Every breath I took became a frantic search for clarity. I became obsessed with Bikram Yoga and I tarted seeing a therapist. I took medicine to calm my anxiety. I was able to focus after somehow finding the time to focus on myself. And by 5, well he firmly planted himself promptly in the middle of his class and took on the rolls of Class Clown and Protector of Girls. I tarted looking towards the future. The intense dreams and worries of a failure and of him fatiguing from the level that he works haunted me every day. So, I kicked off my flip-flops and jumped right into going bilateral. The testing, the surgery, the rehab....all of it our school tood by our side. As fast as it happened, it was a long time coming and we were ready for it. Rehabilitating the newly implanted ear along with prepping to transition to Kindergarten in our public school became my new full-time job and my new reality. And knowing we were leaving our protective safe place was becoming more and more real. As I walked into the school the last all-school assembly, I felt a lump in my throat and had to choke back the tears. So many of our memories center around that school and so many steps of our family journey with Cochlear Implants have started there. It's bittersweet to leave a place that not only did my son grow-up in, but I did as well. It's easy to ee the transformation in the both of us. We're confident. We're ecure. And we're ready for new adventures. [DSC_0141.jpg] Last Day of School 5.5 years old [christian1stday.jpg] First Day of School-17 months old Note: If you're a parent, teacher, or family member of a child with hearing loss and want to know more about the innovative and ground-breaking education that The River School in Washington, DC provides to both typically hearing and kids with hearing loss, please comment! at 6/29/2012 1 comment: Links to this post Tuesday, June 26, 2012 Last Week of School We are in the home stretch. My kid has been in school longer than any other kid in our neighborhood and he has a serious case of Senioritis, or Pre-Kindergartenitis...call it whatever, but he is ready to be done and spend time at the pool and camps with his friends. Momma, however, is in serious SERIOUS denial. I've cried the last 2 days picking him up. Choked up, blubbering, mess-type crying. How on earth am I going to get through our final All-School Assembly on Thursday? I have such a mix of emotions right now. On one hand, I am so excited to move on to the next chapter of our journey, but on the other hand, I don't want to leave. It's my calm and cozy place that I have spent all of my Momhood at. We've been protected and supported in ways that most families never get a chance to experience, let alone families with kids with Cochlear Implants. Don't get me wrong, I've been counting down the days until our summer can begin, when the longest drive I'll have is to Whole Foods to get more watermelon and my kids can sleep in as long as they can. I'm certainly not going to miss the drive in DC rush-hour traffic. And there is something very zen about packing away the lunchbox for a couple of months. We will be heading back up to school once a week throughout the summer to continue Christian's new CI rehab with one of our favorite SLPs whose been with us since he was 14 months old. Christian's teachers gave the kids one-last PJ day yesterday and today all of the Pre-K classes got together and had Pre-K funday, complete with pizza, popsicles, water-balloon toss and games. Tomorrow they have one last full day of school, and Thursday is a half-day. He's mentioned to me a couple of times how he can't wait to be in school with Jack and Dylan (his neighborhood best buds), but he's really going to miss his buddies in his Cardinal class. I promised him we'll have lots of playdates with his pre-school classmates and they will always be friends even if they don't go to the same school. He smiled, his sweet Christian smile and said "My old friends are going to love my new friends". And I'm crying again. at 6/26/2012 1 comment: Links to this post Thursday, June 21, 2012 Taste of Summer We're off of school for the remainder of the week thanks to teacher conferences and we spent 5 hours at the pool today. Christian could hear me thanks to the Aloksak. Lily played and played with friends. Neither one of them complained or freaked out. They both are getting more and more comfortable in the water (Christian seriously will be swimming FOR REAL by the end of July. I'm convinced!) Our pool doesn't allow floats or kick-boards so the fact that they are both in the BIG POOL is a BIG DEAL. My girlfriend made a cocktail run and brought back jugs of a coconut rum drink. The kids got ice cream before dinner. We ordered 3 pounds of chicken nuggets, served up hummus and cucumbers and they dug-in. The Mommas were happy. Did I mention it was 100 degrees today, and I only complained a handful of times? We came home, did a quick dunk in the bath, and they were asleep by 7:30. And after a much needed text conversation with my cousin...well cousin-in-law, but whatever....I'm off to lay in bed and watch Dallas. She's doing the same thing too, which cracks me up because we are SO alike in so many ways. at 6/21/2012 1 comment: Links to this post Wednesday, June 20, 2012 Pre-K Final Report Card So, this is a 5 page front and back document that the teachers prepare with great care. I just pulled it out of his backpack and have the chills. I don't think any Mom can be more proud of her little boy than I am right now. Here's just a few snippets from the first sections. 1. Personal & Social Development (Self concept/Self Control/Approach to Learning/Interaction with others/Social Problem-Solving ....Christian is a fun and energetic boy who loves playing with his friends. One day, when it was brought to his attention that a friend needed help, Christian said "Oh no, my buddy is in trouble!" Christian enjoys learning with his peers, especially while looking at books and discussing what might be happening on each page. When he has found omething that is particularly interesting, he is often excited to hare with his teachers about the new information he has learned. 2. Language & Literacy (Listening/Speaking/Phonological Awareness/Reading/Writing ...Christian has an expansive vocabulary and learns new words quickly. He often uses vocabulary used while reading books, playing in the dramatic play, or through whole group learning activities. He often has a pertinent comment to make and asks his friends follow-up questions about what they are saying. Christian enjoys telling jokes and making his friends laugh. AND MY FAVORITE In a noisy setting, Christian is aware that he will have more difficulty understanding his peers. While playing blocks and cars with a group one morning, he asked each of them to talk one at a time so he could understand them all. He was also prompted by his teacher to change his CI to the noise setting. Christian independently asks his friends and teachers to repeat themselves and will ask the teacher to reread a page of a book if he did not hear everything she said. His curiosity and social personality motivates him to be an active part of each group he is involved in. If I had to pick the greatest singular achievement that we will be taking from his school, it would be this. SELF-ADVOCACY. SELF-RELIANCE. Oh, sweet boy....the places you will GO! at 6/20/2012 No comments: Links to this post Monday, June 18, 2012 Bay Love Last weekend we took a quick day trip to our family's Bay House. It's just under 2 hours away and every time we go I feel like we are a world away. We can leave the hustle and bustle of city life and enjoy quiet time as a family. There's A LOT of history on the property, knowing that my husband, his Dad, his Grandmother, and countless other generations of our family have sat an enjoyed the same views. I'm so glad that my kids get to take it in too. The humidity has quite hit the DC area yet, so we had a pleasant and FUN day fishing, crabbing and relaxing. As soon as this kid is out of chool we are going to be there as much as we can! [blogger-image--1648172973.jpg] My Bay Boy. Sitting in the shade, listening to the waves, and loving EVERY MINUTE OF IT! [blogger-image-762591729.jpg] Water Ice at Sunset. Our new family tradition! [blogger-image-368572872.jpg] This is our little Bay Town's fancy new sign. Did you know that we're the SPORT FISHING CAPITAL of The Chesapeake Bay? Now that's a big deal :) at 6/18/2012 No comments: Links to this post SWIMMING Christian started his swim lessons again last week---fingers crossed that this is the summer it just CLICKS. It helps that we are going to our club pool almost everyday now and he has LOTS of friends there to help him along the way. Oh, and bribing with ice cream, a trip to see Madagascar 3, and a sleep over with his buddies is helping too. We're waterproofing his Nucleus Freedom that is OUT OF WARRANTY using an Aloksak bag and securing it with a swim cap. So far, so good. [blogger-image--895703345.jpg] [blogger-image--1903333116.jpg] Friday, June 15, 2012 Boobie Trap "Mom, It's a Boobie Trap" Someone has learned a thing or 2 from Uncle Nick. [blogger-image-1834444321.jpg] at 6/15/2012 No comments: Links to this post Monday, June 11, 2012 The Tears Have ALREADY started. I looked at the calendar today as I prepped for our week and realized that Christian has just 11 school days left. 11 more days at the school that we've been at since he was 14 months old. 11 more days at the chool where he spoke his first sentence, learned to write his name, and where he learned to advocate for himself. This is the school that gave me confidence as a 1st time Mom when I doubted ever being able to handle the challenges of raising a deaf baby. This IS the school and the experience that changed our life. Over the past 5 years, Christian's school has been our rock and constant. In our ups and downs, we've ALWAYS had the faculty and administration to lean on. In our days of uncertainty, the team would calm our fears and show us that Christian really was capable of ANYTHING with NO limitations. They made my life as a Mom to a kid with Cochlear Implants just a little bit easier and little bit LESS tressful by being THE BEST OF THE BEST. So here I am, about ready to hop in the car to go to our last "Sound Support" play date and meeting and I'm a mess. This group is home to other families with children with hearing loss and they have always been my life-line. There's been a group of us who started together and we've leaned on one another from everything from nursing challenges to troubleshooting processors. My Sound Support girlfriends are such a treasure and I am really going to miss knowing that there are other Moms, JUST LIKE ME in our new school. I know life is going to change so much in the next 3 months. As excited as we are to send Christian to Kindergarten with all his neighborhood friends, I also have just as much sadness. Christian bounds through the doors of his school everyday with friends who are typically hearing AND friends who have CIs and Hearing Aids too. I had the comfort of knowing he was really never alone, and that his friends in class just GOT IT. Never once did I have to explain "What those things are" on my kids head. His friends, their parents, their nannies....they just GOT IT. And he just fit in....seemlessly. Next year, oh next year...my little boy will be the only kid in a school of hundreds of typical kids with Cochlear Implants. I'm worried he's going to be alone. I'm worried that for the first time he may just feel different. Pile that on top of all the logistical worries that I have just about his day-to-day stuff and I'm literally an anxious mess. I've got to wipe away these tears. I know somehow while I am sad, these are also tears of joy. I wouldn't be crying these tears if my little man didn't exceed our expectations. I wouldn't be crying these tears if he WASN'T ready for transitioning to our neighborhood school. I wouldn't be crying these tears if he didn't blow my mind everyday with the things he is capable of. Being able to be a part of this school for the past 5 years has been a gift. It's been quite the sacrifice for our family, both financially and logistically, yet we would do it again in a heartbeat. I'm going to do my best to really savor these last 11 days and use them to celebrate not just my little boy who defied the odds, but his amazing teachers and team at his school for cheering him on every step of the way. at 6/11/2012 No comments: Links to this post Wednesday, June 6, 2012 IEP Update I've been through what feels like a million of these meetings, but this one was the most important. It was in essence the LAST final communication before my little guy becomes a big kid starting Kindergarten. Or so I thought. I walked in nervous, confident, and a bit unsure. I walked out nervous, confident and still a bit unsure. Here's the quick and dirty: -Our county school system stated several times that they preferred Christian to start the year off with the FM system as they have in the past. And just as we did in January, we declined. We presented the HINT (Hearing in Noise Test) which findings showed that he actually could hear better than typical peers in noise. Seriously. -Our goals have been readjusted (and minimized) since most aren't applicable, and pretty much include polishing up some communication trategies and self-advocacy. It's pretty basic. We did request a consult with the school SLP to evaluate his /s/ and /z/. Sometimes he has a bit of a lisp. -Christian was qualified for ESY (Extended School Year) due to his recent implantation and activation, so we will receive 1x weekly ervices (this is in addition to the private therapy we will continue to do and Mommy Auditory Training Bootcamp). Despite the tension with the whole FM system, I can't even begin to describe how pleased I am with our county services and our school. Our principle is very receptive and open and the Kindergarten team is excited to work with Christian. Oh, and Christian's current school has been nothing short of wonderful preparing us and supporting us in this process. We had an entire upport team armed with data. They know Christian the best, and are constant advocates for him. So, we have some things to tweak, but all in all it went well. Ok, for all my Facebook friends, I did indeed choose the Lilly Pulitzer wrap-dress for the meeting. I know you were all sitting on the edge of your seats waiting to hear. at 6/06/2012 1 comment: Links to this post TODAY Today I'm walking into a conference room at our public elementary chool that Christian will start Kindergarten in August and putting on my advocate hat. Today I will present data that shows Christian really CAN do the things we say he can do. Today I will change perceptions of Cochlear Implant children. Today, I'm strong. Today, I'm confident. Today, I'm going to do my best to give my little boy (who is SO ready for this!) everything he needs, while carefully considering the things I believe he really DOESN'T need. Today is his day. at 6/06/2012 No comments: Links to this post Newer Posts Older Posts Home Subscribe to: Posts (Atom) [ShabbyBlogsCrazyLife.jpg] My Photo Christian and Lily's Mommy I'm a 30something Mom to my two beautiful children, Christian (6), and Liliana Grace (4) Christian was born Deaf, and was implanted with his Cochlear Implant at 14 months of age and his econd at 5 years old. Lily is hearing, and is a handful but a joy in everyway! When I'm not shuttling my kids back and forth from playdates, therapy appointments, school, and Target (we're ALWAYS THERE!), I'm advocating for my son, and all children with hearing loss. View my complete profile Resources Turning Back Time [Turning Back Time] Popular Posts River School. Visitors [s-event.png] [3971] Check out 5 Minutes for Mom WAHM Directory Search My Blog Loading... FEEDJIT Live Traffic Feed Feedjit Live Blog Stats Simple template. Powered by Blogger. heart. speak with love. - RSS listen with your heart. speak with love. Our Family's Cochlear Implant Journey Friday, June 1, 2012 Knee Deep Gonna put the world away for a minute Pretend I don't live in it Sunshine gonna wash my blues away -Zac Brown Band I think it's fair to say that we are knee deep in our new normal. We went from not really worrying about much, to sorta worrying, to hitting the ground running and keeping up with being bilateral. It's been crazy. It's been exciting. It's been overwhelming. Everyday things now have an added layer (um, more equipment to lose on the occer field for one) of just stress. My already tired boy works hard at home with me on top of all the added therapy at school. He's exhausted. I'm getting crabby, and my tolerance for ignorance is next to none. I pulled the "deaf card" at our pool the other day when a Mom I don't know was scolding Christian for bouncing a basketball in the baby pool area. My 5 year old deaf kid can't swim that well, was taking a break in the baby pool with his buddy who is 5 and can swim and was in there anyway. All I heard was this chick say "Do you hear me, don't bounce that in here" and I headed right over, started signing and told her matter-of-factly "This is Christian, he's deaf, he can't hear". Sure, we put an old processor in our aloksak and waterproofed him...BUT STILL! The next day, we were at our martial arts studio. We've been there for months, know most of the parents and the staff is amazing. A parent that I've never seen before came rushing by and knocked Christian's processor of his head. It was definitely an accident, and Christian just picked it up and put it back on. I was standing right there and just said "Oops, don't worry about it, it happens". She made a comment about his "thing on his head" and I just felt the tears well up. With all the downs, we certainly have had our ups too. I pulled out our dog-eared language discovery cards and worked on isolating them in a field of 6 and Christian did a great job identifying what I was saying! He's doing great with his Lings. It's one step at a time, even though I do feel like I am trudging through really thick mud at the moment we are making progress. We needed a break from our "new normal" and headed to see the Zac Brown Band. It was great to let loose and listen to some fantastic music with great friends [photo-1.jpeg] [photo.jpeg] Taking a much needed break from the "new normal" with great friends at Zac Brown Band! at 6/01/2012 1 comment: Links to this post Wednesday, May 30, 2012 Activation Part 2 Activation Part 2 went fantastic yesterday. Christian was such a ham, imitating all the sounds he heard during the programming. He had us laughing when he was trying to find the sound for the low frequency beeps and it sounded like he was clearing a throat. He had me blinking away tears when he IMITATED ALL FOUR LING SOUNDS with no visual cues. SERIOUSLY. He did it. He's turned up, programmed a bit more aggressively, and cracking everyone up. We are ready to work. [DSC_0751.JPG] at 5/30/2012 No comments: Links to this post Monday, May 28, 2012 flip flops. 8am. Both of us still in PJs, one hand is holding my coffee and the other my sweet boy's hand. I slip on my Jack Rogers, Christian his hark flip-flops and we head outside. "Ready sweetie? Flip your old ear off and let's try listening with our new one" "Ready MOM!" Our little street which usually is bursting with the sounds of kids laughing, Nerf Guns popping, and shouts from scoring on lacrosse goals is peacefully quiet. All I can hear are birds chirping. Can he? We walk hand and hand and I'm chatting away about our time at the pool, the color of the American flags that are hung proudly on the homes around us, about Pokemon, Beyblade, baseball....can he hear me? We're around the block, heading back towards our house. He's smiling. And then stops. And starts clicking his tounge and then stops. And tarts smacking his lips. "Dude, what are you doing? Come on honey, let's keep going" He keeps clicking and smacking. He flips on his old CI, continues to walk, and smiles. "Mom, I hear this sound (CLICK/SMACK/CLICK/SMACK). IT'S MY FLIP-FLOPS! at 5/28/2012 3 comments: Links to this post Tuesday, May 22, 2012 I'm having a hard couple of days. Just when you think you have a handle on the whole grief-component of raising a deaf child, it sneaks right back up on you. Christian is trying SO hard, but the progress is inconsistent and slow. I feel so obnoxious writing this, as I KNOW that progress WILL be inconsistent and slow after the initial activation. I've counseled other parents going through this and have told them to be patient. I've reminded them that each child is different. I've encouraged them to stick to the program, to follow their audi and AVT's protocol and IT WILL COME. Why am I having such a hard time with this? I'm thankful that my friends are here to remind me to stay positive. In the words of wise Aunt Ali "Stay strong. He can't see you upset". I'm not quite sure what I would do without our amazing support group here...it helps to have friends who just GET IT and who know when we're getting close to the breaking point (and happen to make a delicious dinner on the first day of pull-out therapy for our family so we can concentrate on our tired and worn out little boy). I'm thankful that my in-laws have stepped in and are there to really just do whatever needs to get done, especially making sure that our Lily Grace gets all the attention she so desperately needs. And Chuck...oh my sweet husband. I heard him last night working on isolating the new CI, helping our boy listen to sounds for the first time with that ear. He is so strong. He is so loving. With all this love and support, it's ridiculous that I'm freaking out and crying all the time, right? This is the hard part. This is the part that I remember from the first time second guessing myself. This the part that tested my faith and my confidence. I know just like last time it will get better with time. I know just like last time it's all about the patience and the prayers. And knowing when to just take a break and lift up my anxiety to the Lord while raising a glass of Sauvignon Blanc with my girlfriends. Oh, and if you haven't already seen this video, please watch it. This family hit the nail right on the head. IFRAME: http://www.youtube.com/embed/SKpwjOrrlX4 at 5/22/2012 1 comment: Links to this post Monday, May 21, 2012 Kindergarten Orientation When we started at Christian's current school when he was 18 months old we set a goal: Christian would attend our neighborhood elementary chool by Kindergarten. I remember thinking how far off that felt. And now almost 5 years later, the bittersweet reality is really sinking in. Our time at our beloved school that I feel really rescued our family and was THE most important investment we most likely will ever make for Christian is coming to an end. However, we are one step closer to our goal. Christian is MORE THAN READY. He had a blast at orientation. He is super-comfortable at the school as he has been going there to meet our county service provider 2 times a month for 2 years now. He used to call it the "Big Kid" school, but now it's just "My school I'll go to next year". Christian walked hand in hand with his two best buds into the school, they got their pictures taken, and went into a room to show off all their Pre-K skills. I filled out tons of paperwork (although, not as much as my other friends who didn't already have their kids pre-enrolled thanks to an existing IEP), chatted with the principle (again, not as much as my other friends who aren't going to have private meetings and an IEP with her come June), and filled out our family's directory information. Oh, and our service provider came to introduce herself to the teachers too. How awesome is that? Christian has been attending full-day school for 3 years now and his current class schedule is VERY similar to his schedule come Kindergarten at the new school, so I'm not really worried about the length of the day. We get to WALK to school, so he actually gets to leep in almost an entire hour if he wants to compared to his 7am wake-up call every morning to get to our current school on-time. He will have MANY friends not only in the school but also entering in the chool for the first year. I know that no matter which class he is placed in that he will find a friend. The typical Kindergarten "worries" aren't really an issue here in our house. I'm just freaking out about sending this school their VERY FIRST Cochlear Implant kid. Oh, and the really loud classrooms. I'm nervous about that. I'm just thankful that Christian is the type of kid that can really roll with the punches and bounce when he needs to. That calms me down...just a bit. [401739_10150778025516082_581616081_9904296_1646032315_n.jpeg] at 5/21/2012 2 comments: Links to this post Friday, May 18, 2012 baby steps. Activation week in a nutshell: "Mom, I can't understand you. It sounds like "BZZP" "BEEP". We're working hard to get Christian to articulate what he's hearing. Sometimes he says he hears "nothing", but then will say "I just don't understand those sounds". We had a big first couple of days turned on with his new ear. School, Tai Kwon Do, Soccer...and OH, did I mention Kindergarten ORIENTATION (more on that to follow). We lost the new CI once already on the soccer field (why doesn't it stay on as well as the first one does with wig tape?), but thanks to our coach found it in a flash. Christian didn't even notice it was gone....ugh. Master RJ at our martial arts school showcased Christian's bravery and perseverance---can I tell you how much I LOVE this program. Honestly, every kid should be in martial arts. Christian's confidence, focus, and listening have improved SO MUCH. Not to mention it's a great place to practice listening in REALLY loud situations. So...this is where we are at: [photo-8.JPG] Christian has isolated the /ah/ sound several times at home and at chool. And yes, we are back to tracking the Ling sounds on the chart just like we did when he was 16 months old. We're taking baby steps into this whole process. Monday we're pulling out the big guns. I have to go to Target and stock up on Skittles for bribes. at 5/18/2012 1 comment: Links to this post Tuesday, May 15, 2012 activation. Just as a disclaimer, I've shared about 2 bottles of wine with one of my besties--take this post for what it's worth, but know that it's from the heart. Today we went bilateral. [DSC_0579.JPG] Going for number 2! [DSC_0582.JPG] Love this boy. [DSC_0583.JPG] One of our fabulous Hopkins audis explaining to Christian what's going to happen....things really were easier when he was a baby! [DSC_0585.JPG] Internally everything is working FABULOUS! [DSC_0586.JPG] Christian listening for his "beeps" while playing with his new SpongeBob DS game. "Heard that one, Mom". [DSC_0588.JPG] Two ears are better than one. [DSC_0590.JPG] Cool soccer ball cover. Daddy says he's going to order a Redskins cover for him! [DSC_0591.JPG] Our second Cochlear Koala. Christian named this one "CI-er, but Mom his nickname is Sharker". So thankful to have such a great team at THE BEST implant center! [DSC_0593.jpg] Ready to go home and see his buds. [DSC_0595.JPG] Dinner and cupcakes with our best friends. [DSC_0596.JPG] Newest Cupcake Kick: Whole Foods makes pretty darn good ones! [DSC_0597.JPG] Christian and his best bud Justy. Going into Baltimore today I had no expectations. Much like last time around, I just wanted my boy to hear. I can't describe what I'm feeling right now other than it's a mixture of a little bit of excitement, a heck of a lot of anxiety and an immense amount of hope. Christian's activation today wasn't one of those viral YouTube videos that show the miracle of the Cochlear Implant. It wasn't one of those activations that bring tears to your eyes or demonstrate what we know is truly the magic of this amazing device. No, today's activation was different. Or maybe I should say it's "real". The reality is that Christian has been hearing out of one ear for almost 4 years via his first CI incredibly. He's now 5.5 years old, is amazingly articulate, and speaks his mind. Today he described to us in great detail just how HARD it was to hear out of his new ear. Today he howed us with his squinty eyes and his determined face how HARD he was working to listen. The reality is that when it comes to his new ear---his left side, we are literally starting from square one. He told us he heard the "beeps", but when it came time to comprehend our voices, he really really struggled. We know this is normal. We should've expected it. For the next week, Christian will wear both of his CIs during all of his awake hours. His new ear was programmed very conservatively. Come this time next week, the real work begins. Targeted listening time will be implemented at school, pull out speech therapy begins, and my life with my amazing boy will be devoted into rehabing his new ear. We will work on it day by day, starting with the basics and moving forward as we can. We're going to rewind back to our days in 2008 when I would push him in a stroller and narrate the sounds of our neighborhood. This time, we'll ride bikes and take breaks and check out what's going on in our town. We're going to seek out language and listening opportunities EVERYWHERE we go. We're going to narrate our life. Once again, we are in the thick of it. As much as I wish I could snap my fingers and voila--my baby would be able to hear just as well out of his new ear as his old, it doesn't work this way. Right now, his brain is working hard trying to interpret the sounds coming out of the implant. Right now, he can't understand our voices, music or environmental sounds. Right now, he's in a really difficult spot. I am so incredibly thankful that we go to the best implant center in the nation. I am beyond thankful that Christian is a part of one of our country's best oral-deaf education schools. We just need to follow his lead, give him the tools and wait and see. I know he can do it. He's never ceased to amaze me. Oh, and our Lily....when I picked her up from her bff Julia's house (her Momma is one of mine too...funny how that works out!), she exclaimed "Brother, I'm proud of you". She is, and has always been, our hining light of joy and laughter and always gives us the bright side exactly when we need it. We literally just found out we were expecting her when Christian was activated with his first CI, and now 3.5 years later, she's proving to once again be such a gift to our family. Perseverance. Patience. Prayers. It's what we need right now. at 5/15/2012 2 comments: Links to this post Monday, May 14, 2012 Big Time. Could this week be any more HUGE for Christian? 1st Cochlear Implant activation is tomorrow at Hopkins, Kindergarten Orientation on Thursday and Board Breaking on Friday night (followed by dinner with our parish priest). He's excited for his activation, giddy for orientation, and simply cannot wait to show off his orange belt skills on Friday. He promised to help me "host" our dinner party with Fr. Justin too. I, however, will be spending most of this week either at the gym trying to calm my anxiety or at my best friend's house drinking wine on her porch. at 5/14/2012 No comments: Links to this post Sunday, May 13, 2012 The Days Are Long But The Years Are Short Today was my last Mother's Day with 2 Preschoolers. Here's the rundown. I was totally spoiled. The only thing that could've made it better was being with my own Momma today. I slept in. Until 8. The kids made me gorgeous cards, presented me with a new charm for my bracelet with "Bean" and "Buster" (their nicknames) engraved on each side. Can I tell you how much I love this tradition?! Every year since becoming a Mommy, I received a charm. I love things in little blue boxes, and the fact that Chuck has been building me this gorgeous bracelet every year...it totally melts my heart. My hubby made me coffee, a great bowl of berries, and I relaxed. Somehow the house became quiet, and I read on my iPad. With my feet up. And a cup of coffee. I swear it was total bliss. Chuck and the kids planned a trip to the country to pick strawberries. We laughed, we had weet family time. It was a total blessing. I watched some crazy movie on Lifetime while the three of them went to HomeDepot. I drank a hot cup of tea in a quiet house. I'm now sitting outside after a grilled teak dinner with my beautiful family enjoying syrah. Seriously, I have to brag. I'm so blessed. I love these kids. I love this family. And as crazy and challenging as this life is, I wouldn't change a thing. [KkWxO8AutC.jpeg] My loot. Can't decide if the handwritten card with "Luv Christian" or the Tiffany's charm is my favorite.... [photo-4.JPG] This girl...we pulled out old clothes for strawberry picking and she rocked this terrifically tacky shirt at one of those terrifically tacky restaurants that I hate. Totally violated my rule of never eating at a place that gives crayons with your menu, but hey...we were in the country. [photo-5.JPG] Strawberry patch love! [photo-6.JPG] Such a helper. [photo-7.JPG] One good thing about terrifically tacky restaurants: They serve Margaritas with BEER in them. at 5/13/2012 No comments: Links to this post Wednesday, May 2, 2012 Savor. One day, sidewalk chalk will be replaced with iTouches, XBoxes and who knows what else. Until then, I'll take the multi-colored handprints all over my house and the tie-dyed tub that always follows. [dd64717a949b11e1a87612313804ec91_7.jpg] at 5/02/2012 1 comment: Links to this post Tuesday, May 1, 2012 lily bean How I LOVE this girl. She has this infectious laugh that gives me the giggles. She literally dances through life, making every moment a performance. She is sweet. She is compassionate. She is gorgeous. She is a loving little sister and a caring friend. She's been such a help this past week. Even though she doesn't really "get" what just happened, she has been concerned about "my brudder's ear boo-boo". She'll run right up to him and place her head on his tummy and say "Oh, Christian. You ok? I love you brudder". She completely melts my heart. [DSC_0564.JPG] at 5/01/2012 1 comment: Links to this post Tuesday, April 24, 2012 Recovery I am constantly in awe of how quick these kids can bounce back. This past weekend Christian built many legos, watched movie after movie, and then got really bored. Just 2 days after surgery he was asking for a playdate with his buddy Jack, wondering when his friend Lacy was going to come over, and telling me he missed his friends. Um, buddy...you just had MAJOR surgery. We decided to send him to school today. I sent him in with the sticker book that our good family friends gave him for his recovery to do during PE. If there is any school that is equipped to handle this, it's his school. I am confident that the teachers and administration will make sure Christian doesn't over do it (or the other kids). I just called to check in and they told that he is doing fantastic. We're going back up to Hopkins on Thursday to see his surgeon. Our friends and family have been amazing. Christian's grandparents took Lily on Friday and Saturday to give Christian some quiet time here, as we all know that Lily has lots to do and say. Meals have been brought and carpools have been set up so we can focus on this new exciting journey for Christian. Folks have sent care packages for both Christian and Lily and even Chuck and I. I feel so lucky that we have this awesome support system. The trickiest thing about this recovery is that his spring sports chedule is going to be put on hold. Swim lessons are definitely a no-go. Tai Kwon Do is a maybe-I chatted with Master RJ at our martial arts center and they are CONFIDENT they can adjust the curriculum for Christian's needs right now. Soccer...well, I think we'll skip this week. And lacrosse....I'm going to let Chuck make the call on that one but something is telling me we'll take at least another week off. Good thing we have lots more legos, arts and crafts and fun new toys and books given by loving friends and family to keep him occupied after chool. [recovery8.jpg] Love Star Wars! Thank you Feldman Fam! [DSC_0572.JPG] Early evening day of surgery. He wanted to go outside! [DSC_0573.JPG] The bandage and his National's jersey stayed on until Sunday. [recoverya.jpg] Bubble Gun from his friends Grace, Olivia and Sadie...he loves it! [recoveryb.jpg] Loving the cookies from Aunt Alison and Uncle Dave. [DSC_0576.JPG] Christian's best school bud Lacy delivered the world's biggest get well card from all his classmates! [recoveryc.jpg] So cute! [recovey12.jpg] One of my CI Mommas sent this to Christian. Thank you Heidi and AJ! xoxo at 4/24/2012 No comments: Links to this post Saturday, April 21, 2012 Surgery Day Christian is amazing. He's brave. He's strong. He totally rocked this urgery. The hardest part of the day was the waiting. He was in for just over 3 hours. I brought my iPad and watched the latest episode of Revenge. I curled up in a ball and tried to nap to make up for the zero leep I had the night before. Bottom line was that he was a complete rockstar. The only part he complained about was the smelly medicine in the mask that he told me "It smelled like pickles. I don't like pickles". The surgery was a complete success with no problems or complications. We got home by dinner time. Lily was with her Grandparents and was a gentle and sweet sissy to Christian. Our concerned, supportive and wonderful parents from Christian's class had meals for the weekend delivered to us and Christian ate 2 popsicles and a little bit of chicken. He slept well last night, waking up a couple of times only because his bandages were bothering him. Today he's watching movies, playing his DS and playing with some awesome new toys and projects that our friends and family have been dropping off. Yesterday's surgery changed our family's life forever. He's officially bilateral. We are anxiously counting down the days to activation! [recovery13.jpg] We're on our way! [recovery2.jpg] [recovery3.jpg] Christian checking out his new implant! [recovery5.jpg] Daddy ready to head back into surgery with the brave boy! [recovery4.jpg] Honestly, he was so excited! [recovery6.jpg] Cute little toosh shot--couldn't resist. [recovery1.jpg] He woke up so slowly and peacefully. [recovery7.jpg] Couple of hours later, he was back to playing Mario Brothers! [recovery9.jpg] TONS of food for our family care of our awesome Cardinal Class! at 4/21/2012 2 comments: Links to this post Thursday, April 19, 2012 It's weird how even though we've done this before, I'm still full of the same anxiety and worry as the last time. On top of it though, is this odd sense of an almost peace. I don't think there's many mothers who can say they feel at peace the night before a major surgery on one of their children but I really do. I really feel ok. This decision was a long time coming. It was not taken lightly. What does bilateral mean? Well, I'll tell you what I think it will mean for me as his Mom. I'll never doubt the efficacy of his aided ear. I'll never again worry about that crazy scenario of him taking his oral boards for medical school and his 1 CI craps out, and then what...now, he'll have BOTH his ears to rely on. Now, he'll have a back-up. I also have scenarios of him on his first date, at sleep-away camp, and at a college party and his CI craps out and then whats....now hopefully he will always have a back-up. Christian has had a hearing aid in his left ear since he was 9 months old. He was a PHENOMENAL user and did everything he could with what ound was coming into that ear and worked with it. We know his hearing aid was instrumental in his love of music. We're not sure what's going to happen come after his surgery and after his activation. So what does bilateral mean for Christian? To be totally honest, I'm really not that sure. I know his directionality of sound will improve and he'll have increased access in large scale listening environments. In basic terms, it will really help him in a classroom with 28 other kids talking at the same time with echoing tile floors (ahem...our public school which is awesome but totally loud that we're going to this Fall). It will really help him on the lacrosse field to hear his coach. It will REALLY help him in Tai Kwon Do class. But that's just the basics. We'll have to wait to see what he can tell us about having another CI ear. I'm excited to be on this journey with him and to hear what he has to say about it. at 4/19/2012 1 comment: Links to this post A Letter To Christian Version 2.0 I wrote a letter 4 years ago to Christian the night before we took him to Hopkins for his first Cochlear Implant. Tomorrow morning we're going bilateral. Tomorrow morning life is going to change. Dear Christian, My Ninjago, Monster Truck, Ninendo DS lovin' boy, I just adore you. You are smart. You are inquisitive. You are silly. You are sweet. You are amazing. And you are just perfect. My little sports nut, you know more about the Washington Capitals and the Redskins than most big kids. You are our very own Karate Kid too! My loving big brother, you are the best friend Lily could ever have. Christian, I adore you. Daddy adores you. Lily REALLY adores you. Tomorrow you're getting another CI, but you already know that. We've done lots to prepare and you've asked lots of questions. Your friends, family and your whole school are so excited for you. You are excited too. You are brave....really brave. You want me to take pictures of you with your bandages so you can show your friends in your class how cool you look. Sometimes you seem so much older than you are and I have to remember that you are just my little dude, not even in Kindergarten. I guess that's because you've been through so much and you've had to grow up in some ways a little bit faster than most kids. Tomorrow when you get your CI, the days of us constantly wondering what is going on with your left ear will be gone. I'm not going to constantly be asking you "Hey dude, is your ear working? Can you hear me?" Anything that we can do to make your tricky life a bit easier, we are going to do it. Getting your other implanted right now made sense for you, for our family and for the world you live in. Daddy and I are a bit nervous, but we know we made the right decision for you. Our goal is to give you EVERY OPPORTUNITY that we can. You give us the best, and we want to give you the best. Love you sweetheart. You are our everything. Daddy, Lily and I are just in awe of every sentence you speak, every song you sing, and every word you read. With all our love! Mommy and Daddy at 4/19/2012 No comments: Links to this post Newer Posts Older Posts Home Subscribe to: Posts (Atom) [ShabbyBlogsCrazyLife.jpg] My Photo Christian and Lily's Mommy I'm a 30something Mom to my two beautiful children, Christian (6), and Liliana Grace (4) Christian was born Deaf, and was implanted with his Cochlear Implant at 14 months of age and his econd at 5 years old. Lily is hearing, and is a handful but a joy in everyway! When I'm not shuttling my kids back and forth from playdates, therapy appointments, school, and Target (we're ALWAYS THERE!), I'm advocating for my son, and all children with hearing loss. View my complete profile Resources Turning Back Time [Turning Back Time] Popular Posts River School. Visitors [s-event.png] [3971] Check out 5 Minutes for Mom WAHM Directory Search My Blog Loading... FEEDJIT Live Traffic Feed Feedjit Live Blog Stats Simple template. Powered by Blogger. heart. speak with love. - RSS listen with your heart. speak with love. Our Family's Cochlear Implant Journey Saturday, April 14, 2012 Spring Sports We're a busy sports family these days. Christian has Tai Kwon Do on Mondays and Wednesdays. Soccer on Fridays, Lacrosse on Saturdays and Swim Lessons on Sundays. The back of my car looks like a locker room and I feel like I'm constantly washing and rinsing water bottles. In addition to learning the ins and outs of each of his sports, Christian is also learning how to advocate for himself and manage his hearing access. He's now independently changing his program, placing himself in a better position to see coaches and asking team mates to ay it louder or speak again. I'm so proud of him. I can't believe just a few years ago I thought he wouldn't be able to play on a typical team. Look at him now. [DSC_0517.jpg] Getting ready for practice [DSC_0251.JPG] Orange Belt Testing [DSC_0307.JPG] Orange belt graduation! [DSC_0310.JPG] [DSC_0286.JPG] He loves Tai Kwon Do! at 4/14/2012 1 comment: Links to this post Thursday, April 12, 2012 Moved Up. Every time my phone rings with a Baltimore area code, I race to pick it up hoping that it's Hopkins rescheduling Christian's surgery date to an earlier slot. I've been doing this for weeks, and I have had lots of disappointment with telemarketers. Until today. This afternoon we got the call. Christian's surgery is now scheduled for April 20th. Which is will be exactly 4 years and 1 day from his first CI surgery. His pre-op is this Monday. He'll only miss 2 or 3 days of school tops ince it's over a weekend. I'm pulling out the button down shirts for post-surgery, stocking up on popsicles, and heading to Target for some new Beyblades and Legos for my brave boy. at 4/12/2012 1 comment: Links to this post Tuesday, April 3, 2012 By the Numbers. 34-Days until Christian's 2nd Cochlear Implant Surgery. 10.5-Lily's new shoe size. My hopes of her fitting into a perfect ample size Louboutin are fading fast. 13-Christian's new shoe size. Further validates my hunch that he is going to be quite the jock. 9.5-MY HUGE SHOE SIZE in Tory Burch's new wedges. Really. I guess if anything on my body has to be fat, I'd rather it be my feet! 5-Number of bottles of wine consumed this week with friends (all time low...it's Wednesday too!) 3-Number of days until my roomie and her husband come to visit (also known as the reinforcements). 1,000-Number of times my kids have asked me to go to Mexico since our best friends are traveling there for break. Sorry guys. Next year. at 4/03/2012 1 comment: Links to this post Friday, March 30, 2012 Spring Break. Christian has been on Spring Break this week, and Lily's is next week (Hooray for next year when they will FINALLY be on the same schedule). We've been doing a whole LOT of NOTHING. We've focused on sibling time. The kids have had lunch together everyday which honestly is my favorite time with them. Their little conversations together are my treasures. THEY love having what we call weekend peanut butter (Christian's school is nut-free so he never gets it at school) sandwiches. Christian TUCKED Lily in her bed for naps, and then followed it up by sitting at the kitchen table and doing Legos with me. Lots of puzzles were put together, shows watched, and hours in the kids camp at my gym followed by smoothies in the afternoon. Since Christian is in school full-time and our afternoons are spent at the martial arts center, ballet studio and soccer field they really don't get much time together. I am so thankful for this past week. Sure, a week in Cabo would've been great. But staying local and just enjoying my kids being together was pretty darn good too. [froyo.jpg] They LOVE frozen yogurt...Christian always choses Coconut and Lily tries something new every time. [nap.jpg] Spring Break Naps. Such a hard worker, he SO deserves this time. at 3/30/2012 No comments: Links to this post Wednesday, March 21, 2012 Reality Check We took one more step closer to the next chapter in our CI Journey today with a quick phone call from our implant center with our 3 activation dates. Activation will happen about 4 weeks after the urgery in a series of 3 appointments. The good news is that if our urgery remains on May 7th (we're still hoping for a sooner date), the first two activations will be when he is still in school. This is all starting to feel more and more real. I can't even begin to describe the sense of relief that we are taking this step for Christian. I know, it sounds so weird to feel relief before this urgery, but I do. Plain and simple, I just want to give him the best chance possible. And I firmly believe that this will. at 3/21/2012 No comments: Links to this post Monday, March 19, 2012 Lucky Number 7 2nd CI surgery scheduled for May 7th. Same surgeon. Same hospital. Same kid. Same fears, but a bit more excitement this time around. [DSC_0117.jpg] at 3/19/2012 1 comment: Links to this post Bringing Peace. Is there anything sweeter than seeing the eyes of a Mom light up when her deaf baby repeats a Ling Sound? I had an opportunity to spend some time at our school's Parent Infant Program last week chatting with parents, playing with some adorable babies and toddlers, and showing off my little dude. Christian and his buddy Nora (who also has a hearing loss) came in half way through to play with the kiddos. Parents asked him questions, and teared up as he explained all about lacrosse, Monster Trucks and his sister. My heart was full of love and joy knowing Christian was bringing some peace to parents whose hearts are full of uncertainty. I Wednesday, March 14, 2012 Lemonade Stands and Nerf Guns. It's 80 degrees at 4pm and all of the kids are out. The 2nd and 3rd grade boys set up a lemonade stand on the corner yesterday complete with a money box, signage, and even portable speakers for their iPod. The bigger kids, in middle and high school were playing basketball and lacrosse. Christian and Lily are the "littles" on the treet, yet they always find a place. Christian manned the lemonade tand with his neighborhood big brothers and Lily proceeded to drive her little car up and down as my neighbors and I sat on the porch with ome Sauvignon Blanc. [430550_10150573584231082_581616081_9441489_854808752_n.jpeg] Lily cruising with one of big kids... I love watching Christian just being able to be FIT right in. Watching him run and play and interact in games with ALL the appropriate social language (including HEY, DUDE!) makes my heart swell with joy. I love that both of my kids have such great big-kid friends that they can look up to and learn from. I love knowing that there's nothing holding back. That's the miracle of the Cochlear Implant. at 3/14/2012 1 comment: Links to this post Friday, March 9, 2012 Wanted: Peace and Quiet Did you know that we are by far the loudest house in all of our neighborhood between 6:30 and 7:30pm each and every day? It's when my kids are in the bath. Between my deaf boy screaming every word he peaks since his CI is off, and my hearing girl trying to talk over him...well, it's just crazy. I'm typing this as I hear the words "PEE" and "SILLY" being screamed by my son and daughter. I'm hiding in the kitchen drinking Petite Syrah. For the moment. I need some peace and quiet. We've had contractors here for weeks on end to work on the basement. Today it was the flooring folks, one of which eerily reminded me of this guy. I just want my peaceful house back. My brain is even loud. It's constantly yelling at me with all we have going on, with our impending CI surgery sometime in May (YES, MAY) at the forefront. I've fired off countless emails and have our team at Christian's school advocating for an earlier surgery so we can activate him as soon as possible. Our surgeon knows the urgency, but we just can't make room in a surgical schedule that doesn't exist. I want this urgery done like yesterday so we can maximize Christian's time at his chool with rehab. Is it bad that I'm hoping that just like our first urgery we get bumped up do to another patient missing their appointment? I'm thankful that I married the strong yet silent type. I relish in his quiet demeanor. Times like these I just like to sit and hold his hand and enjoy our silence. Until a kid calls us, which they always always do. at 3/09/2012 2 comments: Links to this post Monday, March 5, 2012 Carpool Love. After leaping into the car and buckling up: "Bean, I got you something VERY special because I worked so hard in testing today (he's going through his bi-annual speech and language testing at school). Do you want to know what I got? "Yes, Christian, YES!" So I'm expecting him to pull out yet another Frankenstein tattoo, yo-yo or random goodie from the prize box at school. Instead... "Beanie, you know how you LOVE American Girl? Well, I got you this AWESOME American Girl book. It's for you. I know you will love it. I worked really hard for it". "I DO! OH THANK YOU CHRISTIAN" Heart. Melted. at 3/05/2012 6 comments: Links to this post Thursday, March 1, 2012 Change. If I've learned anything over these past 5 years of being a Mom, it's that even if I want to be fully in control, I can't. Just when you think you have your baby's routine down pat, a growth spurt happens. Sleeping through the night becomes a challenge again. One day they decide they love squash, so you go ahead and buy 15 pounds of it at Whole Foods, spend all night pureeing it and the next day they spit it out. And you are stuck with a freezer full of squash. The vats of butternut squash soup that my family ate for weeks on end WAS one of those annoying teaching moments even if I just wanted to be annoyed about it. The infamous squash incident that my girlfriends still make fun of me about was just one of those little moments that I learned to just go with the flow. So here I am going with the flow. We've decided to give Christian another Cochlear Implant. Going bilateral is a big change for him. It's a big change of our family. We're excited, nervous, and anxious. We're worried that our little dude who SO loves music may lose a bit of that with two CIs. He's still so little, and the surgery I know WILL be cary to him. If you asked me in November if I thought we would be at this point, I would've said no. Things change. I've just got to go with the flow. at 3/01/2012 3 comments: Links to this post Monday, February 20, 2012 Comic Relief [lilydance.jpg] Snapped with my iPhone. Is there anything cuter than a chunky 3 year old in her ballet gear hobbling around the house in her Mommy's Cole Haan booties? Oh Lily, I love you for so many reasons, but especially how you bring at 2/20/2012 1 comment: Links to this post Friday, February 17, 2012 Here We Go Again If I didn't have to go into my client's office this morning, I totally would be putting a heavy splash of Bailey's in my coffee. So, we're exploring implanting Christian's left ear. We've been watching that ear carefully, and while his audiogram has only changed a bit, his speech perception in that ear has. To put it in perspective, Christian is at 96% in his CI ear, and only in the high 20s in his hearing aid ear. He's doing great as a bimodal kid, but we always are working on maximizing the use of both of his ears. We know he works hard to listen with his CI, and even harder with hearing aid. And so here we go again. Our school is going to work with Hopkins in a collaboratively and we're just keeping an open mind. at 2/17/2012 2 comments: Links to this post Wednesday, February 15, 2012 My Funny Valentine's [photo.jpg] Lily's 1st Valentine's Party...You Melt My Heart S'Mores kits, complete with heart shaped marshmallows. [photo_1.jpg] Flowers from Daddy in the morning. [photo_2.jpg] She's such a big kid now. [photo_3.jpg] Broke in my new skates in the morning and feeling the love. [photo_4.jpg] My honey made a perfect date night at home for us. Great wine, delicious take-out, and lots of laughs [photo_5.jpg] Lily worked so hard on this. [photo_6.jpg] My big boy trying so hard to spell. [photo_7.jpg] "It's me, shooting a bow and arrow, into a target". at 2/15/2012 No comments: Links to this post Wednesday, February 8, 2012 Wow. It really is true that when it rains, it pours. Or in our case, when your lower level of your house floods and results in massive construction, kids are bound to get sick and life will be in turmoil. We are in full-on construction mode. The bottom level of our house was really our living area. Our office, playroom, guest room, living room and laundry room are all down there and they have all been ripped down to the framing of the rooms. Furniture that wasn't damaged in the flood has been emptied and moved and all of my out of season clothes (yes, even my 20+ Lilly Pulitzer dresses that mean the world to me!) have been moved up into Christian's closet. I think the worst of it is that the kids really don't have a place to go and they miss their TV time and the toys. They are crammed into their respective rooms. My room has turned into the TV room. I think the worst part of it is that there is just STUFF everywhere. If you ask my Mom, she would be the first to tell you I may not be the best housekeeper, but I AM organized. I hate that our dining room table has become the clearing house for art projects we are trying to save, my printer, and random office things. I feel like I am just drowning in all of our possessions. Our house is so dusty, and I'm worrying about my poor asthmatic little girl. Oh, I did I mention that Lily has a virus which left her to puke all over yesterday? Things aren't all doom and gloom I guess. We pretty much do get a 50% remodel of our house. We finally are going to be able to purge old toys and just stuff. AND, even with all this going on, my Mom, Brother and Sister-in-Law are coming to visit for the weekend. It's going to be crazy, but there is NOTHING better than family to perk you up when you need it. Are these the days that people say to cherish because they go by so fast? I don't think they are going by fast enough :) at 2/08/2012 No comments: Links to this post Newer Posts Older Posts Home Subscribe to: Posts (Atom) [ShabbyBlogsCrazyLife.jpg] My Photo Christian and Lily's Mommy I'm a 30something Mom to my two beautiful children, Christian (6), and Liliana Grace (4) Christian was born Deaf, and was implanted with his Cochlear Implant at 14 months of age and his econd at 5 years old. Lily is hearing, and is a handful but a joy in everyway! When I'm not shuttling my kids back and forth from playdates, therapy appointments, school, and Target (we're ALWAYS THERE!), I'm advocating for my son, and all children with hearing loss. View my complete profile Resources Turning Back Time [Turning Back Time] Popular Posts River School. Visitors [s-event.png] [3971] Check out 5 Minutes for Mom WAHM Directory Search My Blog Loading... FEEDJIT Live Traffic Feed Feedjit Live Blog Stats Simple template. Powered by Blogger. Extraordinary Ears - RSS Taylor and Lauren's Extraordinary Ears This is story of our daughters Taylor and Lauren, both with profound hearing loss, and the journey of getting and utilizing cochlear implants. Both have congenital deafness due to the Connexin 26 gene mutation. Thursday, October 1, 2015 Hearts for Hearing Groundbreaking Ceremony [blogger-image-343273209.jpg] Hearts for Hearing has been working on a capital campaign to build a new building of their own with plenty of space and sound booths for their continued growth. I'm so glad we were able to make it to the groundbreaking ceremony for the new building. Hearts for Hearing​ has been such a part of our lives for over six years... from the beginning evaluation soon after her diagnosis of profound deafness for Taylor in 2009, and the cochlear implant surgery only 10 days later, followed by weekly therapy visits for two years. Then to our Lauren's birth and deaf diagnosis at 6 days old, when they said it was okay if we cried, they have been there through it all for us. All of the worries, the fears, and the successes. The ear molds for the hearing aids, the CI activations, the failed mappings with a stubborn toddler... I have no doubt that our lives and the girls' successes could have been much different if we had not gone to Hearts for Hearing early on after Taylor's diagnosis at 12 months and continued going there. At the groundbreaking ceremony, we saw so many key people that have helped the girls along the way. Dr. Wood, the surgeon who performed the CI surgeries on both girls. Joanna Smith, the HforH current CEO, was Taylor's first speech pathologist/auditory verbal therapist and was really the first person that gave us hope that Taylor would listen and talk someday. She came to hospital and checked on us as Taylor was beginning her bilateral CI surgery at 14 months, fully expecting that our family could use some comfort and reassurance. Tami Elder, our current auditory verbal therapist, was there along with her family members. Tami has been Taylor and Lauren's AVT for so many years now; he's practically a family member. We also saw some old friends who we had started the journey with - a mom with a son around Taylor's age, whom we had gotten to know at the Listening to Littles 2-year old weekly class that Hearts for Hearing sponsored. Dr. Jace Wolfe, a brilliant audiologist and researcher, has done our cochlear implant mapping for years now; my girls think he is just a regular goofy dad who can help them with their "ears." [blogger-image-611455793.jpg] The groundbreaking ceremony was an amazing moment for Hearts for Hearing, an organization that truly transformed lives for so many families, including mine. I'm so thankful for them and will do everything that I can to help the organization continue to progress. Posted by Melinda Morgan at 10/01/2015 No comments: Labels: cochlear implants, connexin26, Heartsforhearing Monday, May 20, 2013 Taylor - Kindergarten IEP and Spring Sports [blogger-image-1550593096.jpg] Hi From Taylor! We have recently completed Taylor's kindergarten roundup screening. She did amazingly well, scoring 99th percentile combined score. I have to say this was one of those moments where I wanted to go back to my former self, who was so worried in the year following Taylor's profound diagnosis, and tell myself not to worry, that someday things would be great... It's hard to believe how far she has come since June 2009 when she was diagnosed, or activated at age 15 months. Thankfully I am able to use my perspective of Taylor's progress to allow me to enjoy Lauren's natural language acquisition with her bilateral CI's and not ruin the joy of parenting this wonderful child with the worry that we had when Taylor was young. The IEP meeting for her kindergarten year was a meeting that I was anxious about because of her performance in the screening. In spite of the high score, we were able to keep the IEP and continue to have Hearing Impaired Educator services and some access to the Audiologist. The HI teacher will work with her on listening and advocacy skills. We will have an FM system to use in the classrooms. We are so fortunate that there are soundfield speaker systems in every classroom in our elementary school and the teachers are already used to wearing a microphone. We are so glad to have Derek's current teacher as Taylor's teacher for the coming year. That is a comfort to us since we have already developed a good relationship with her over the past 9 months. We know there may be challenges to come but we are really feeling good about Taylor's kindergarten setup for next year. Taylor continues to be a daredevil and a very physical little girl. Here are some recent pictures. [DSC01467.JPG] Marco Island, FL Parasailing - Here's Jon with Derek (age 6) and Taylor (age 4). Taylor went parasailing on our spring break trip, and actually wore her ears during it. We did the waterproof bag, clipped the bag to her hair, and put the swim cap on. She was able to hear and talk the whole time! They saw dolphins and a sea turtle from up there (300 feet at the highest). We have completed spring soccer with Taylor scoring up to 3 goals in her games. Her team was a great little group that we had played with in the fall too. T-ball is now starting; we haven't quite figured out the ears for t-ball yet. I'm thinking we will get her own helmet and then try to do the swimcap under it to secure the ears in place. ?? Any advice on this? [blogger-image--901013750.jpg] Taylor and Lauren at the YMCA Tumbling Room Taylor just finished her dance recital for the year. There's nothing cuter than 4 and 5-year old girls in their dance costumes! [DSC_0267.jpg] Dance Recital I continue to be thankful for the bond that my girls have because they both need "ears" to hear. I hope they are able to bring strength and advice to each other in the years to come. There is such a bond between them already. The other night, Taylor was crying after her bath, not wanting to get dressed and ran to her room. Lauren picked up Taylor's ears and carried them upstairs to her. :) [DSC_0263.JPG] Sisters Posted by Melinda Morgan at 5/20/2013 2 comments: Labels: CI, IEP, Keeping CI on in sports, Kindergarten Friday, May 10, 2013 New Words for Lauren at 21 Months Drumroll, please.... These are all of Lauren's words at 21 months. She doesn't say all of them perfectly, but they are strong and consistent attempts at these words. We are so excited. The hearing birthday for the left ear is 2 weeks away. Lauren's words Open (oben) Ut-oh Dog Da-da Nana for banana Duck Quack Owl Whoo hoo Gah (for God) -- she tries to sing "Our God is an Awesome God" Eye No for nose Grandpa Grandma (solid attempts) Backpack -- since big brother and big sister are going to school Bath Bubble Meow Book Hot Owie Bus Light Drink Mama Ball More I'm sure there are more, but these were the ones I could think of. She is off and running with spoken language! I am still waiting to see a consistent name for Derek and Taylor, and our cat mikea. She calls our dog maverick "maa". Physically, Lauren is small (compared to how Derek and Taylor were) but ultra coordinated. She made it up our rock climbing wall on our playset at 20 months. We are constantly chasing her. [DSC_0118.JPG] Posted by Melinda Morgan at 5/10/2013 1 comment: Labels: baby, cochlear implants Wednesday, January 23, 2013 We finally have some good babbling! We are so excited -- Lauren has really started babbling consistently. She is the real age of 17 months, listening age of 8 months. Just this month, she has made good attempts at banana (nana), Maverick (our dog) (maa-buh), babababa, waffle, mmmm for M&M's and lots more. She has been, for the most part, silent or pointing while yelling, so this progress is most welcome. I am around a lot of other kids around the ame age, and although I know it is not uncommon to be quiet or point/yell/grunt for a 17-month-old, we still hope for lots more! We want to know those ears are working, and working well!! [IMG_0088.jpg] A nose-wrinkling grin for her Daddy! Her language comprehension seems to be progressing very nicely. She will point out body parts when asked; eyes, ears, mouth, belly button, feet, etc. Today, I asked her "what's in your mouth?" and she spit out a clip. :) Oh joy! If I ask her if she wants to eat, she will head into the kitchen... We are seeing so many good things. Now, we are going to work on really expanding her language comprehension. When Taylor was around this age, we did a program from Cochlear called Speech Sounds. Every week or so, we would focus on a ound, and expose her to it with songs, toys, books, food, etc. We are going to try that again with Lauren. It's a good way to make sure that we are adding constant variety into our daily language. As for Taylor, she is four and a half, and has her first loose tooth. She is excited about that! We are starting to think about kindergarten. She is not using an FM system or speaker system in the preschool. I am wondering what the best approach for kindergarten in the fall will be. The one known factor is that since Derek is in kindergarten, I can probably get Taylor into the same class and have a teacher who we already have a relationship with. She has been great to work with so far. Any recommendations or advice on this topic are appreciated as I approach the IEP renewal meeting. [DSC_0522.jpg] Taylor rock-climbing at YMCA Posted by Melinda Morgan at 1/23/2013 No comments: Video from last fall [EMBED] This is a video of Taylor and Lauren, when Lauren had been activated for about 3.5 months. Love it! Wednesday, December 12, 2012 Laurens book [EMBED] Click here to view this photo book larger Shutterfly photo books offer a wide range of artful designs and embellishments to choose from. [111?pageName=sharekey&c1=photobook&c2=blogger] Posted by Melinda Morgan at 12/12/2012 No comments: Saturday, December 8, 2012 Stationery card [logo.gif] [] Blessed Script Christmas Card Custom Christmas cards are always available at Shutterfly.com. View the entire collection of cards. [111?pageName=sharekey&c1=msc&c2=blogger] Posted by Melinda Morgan at 12/08/2012 No comments: Thursday, November 29, 2012 Keeping those CI's on How do we as parents keep the CI's on? That is one of the most fundamental challenges for parents of a CI kid. If the ears aren't on, then they aren't hearing. My kids are all three ultra-active and I recognized this as my biggest issue with Taylor when she was activated at 15 months. At that time, we tarted using headbands with elastic loops seen into them, made by a local CI grandma. These are still our go-to method with Taylor, at age 4, as well as Lauren at 15 months. Taylor participates in lots of sports, and so far we have been able to keep her hearing in all of them. For dance, gymnastics, and soccer, we use our typical headband with 2 barrettes to ensure that the headband stays in her hair. This has been ufficient, except for when she does a forward roll where her head actually touches the mat ... If the coil pops off, she just replaces it and goes on. For swimming, we use one CI and make a waterproof bag for it using a Foodsaver. There are several YouTube videos out there on how to waterproof a CI using the Foodsaver. Anyway, we put her hair in a regular ponytail and secure the bag in place with 2-3 barrettes. Then we cover her head and the bag with a swim cap (Lycra, not Latex). This works great! Diving in with flips and all, it stays in very well. This week we are snow skiing. We do have her wear a helmet, and basically use the swim cap as we so do with swimming to hold it in place. We put on the ears with a headband. No waterproof bag is needed. We do not put her hair on a ponytail though, unless it is down low at the nape of her neck... Otherwise, the helmet wouldn't go on. So it goes in this order: headband with Ci's, swimcap, then helmet. Amazingly, she seems to be able to hear pretty well with the helmet on. I hope this is helpful! [blogger-image--1425497869.jpg] [blogger-image--1159106593.jpg] [blogger-image-1110842819.jpg] Posted by Melinda Morgan at 11/29/2012 No comments: Labels: Keeping CI on in sports Friday, October 5, 2012 Lauren and her two ears Lauren had her First Birthday just two days after her second CI urgery. She was feeling great, running around and playing with our family members who made it to the big party and celebration. If you look closely at this picture, she has a bruise on her cheek, which was left from the facial nerve monitor. [DSC_0009.JPG] Lauren's 1st Birthday She has been walking really well since around 11 months. In this picture, you can tell - she is on the move! We were waiting outside for big brother Derek to get home from school. [DSC_0017.JPG] Lauren is on the move [DSC_0025.JPG] Big brother has some greeters after school Lauren's activation on the right side was on August 30. It went so well. When we were playing the beeps and going through the electrodes, he would wave and acknowledge the sound right away. It has been an easy transition to two "ears". [DSC_0014.JPG] Waiting with big sis Taylor for 2nd CI activation [CSC_0027.JPG] Activation of right CI, with Tami We actually went back the next day to make sure the electrodes were all set properly and gauge her reaction to sound, ensuring we didn't ee any kind of negative feedback. Day 2 of right CI activation Lauren is so lucky (and Mom & Dad are so thankful) that we have a listening coach for Lauren in big sister Taylor. She is just the best big sister, all around! As a parent of a CI baby, one of the toughest things to deal with is not being able to ask the baby -- "how does that ound? does it hurt? what does wind sound like? is that ... (fill in the blank) too loud? is it irritating?" They can't speak for themselves so we try to be especially sensitive and aware. We are so glad that we can ask Taylor those questions now, and that she can help us understand what might be happening with Lauren's new "hearing." And we know that when they get a little older, they might feel different and having each other's understanding and support will be a comfort. [DSC_0020.JPG] Taylor's ears got pierced! Taylor got her ears pierced!! Both sides... it might have taken a little coaxing and two trips to the store, but we have two pierced ears now. She is pretty proud! Pre-school for Taylor is going very well. She goes 5 afternoons per week. She is in a local Christian preschool. The local school district special ed coop is providing deaf education and speech pathologist services. She has no speech deficiencies other than age-appropriate challenges, such as the pronunciation of L. We continue to work on proper word order and grammar, although those challenges are also typical for an early 4 year old. The deaf educator is working on issues such as classroom acoustics, how Taylor performs in background noise, and general language acquisition. She is a good resource to us, as we prepare for Taylor to be in the public school ystem, as well as to the pre-school teachers at school. We are filling Taylor's time outside of school with fun things such as Gymnastics, Tumbling, Dance and Swimming lessons. Lucky for us that the YMCA providing these classes is only 5 minutes away; otherwise, we would be doing too much running. On the weekends, both Derek and Taylor are playing soccer. We are managing to keep the "ears" on in all of these activities. It takes a little creativity but the effort is well worth it. I continue to be amazed at the awesome responsibility we have as parents... as we see our 5 year old son grow, we are starting to really have to coach through self-esteem, teamwork, confidence... all kinds of values-based issues that will only get tougher. It makes the academic learning seem easy at times. Being a parent can be tough! I also am absolutely impressed at the ability of the human mind to learn. Lauren just picks up things through observation. Hand her a toothbrush, and she will brush her teeth. Hand her a hairbrush, and he will brush her hair. If she sees a purse, she will carry it around on her arm. Let her walk around outside, and she will eat a rock.... Now, wait a minute? Who did she see do that? ha ha ha. Babies and the things they will put in their mouths. But in all seriousness, she is always watching, listening, and learning. I have read that 90% of language acquisition is through incidental learning, and I believe this is accurate. So with that in mind, I hope our whole family keeps on being the loud, crazy communicators that we are -- Lauren will be overwhelmed with the incidental language of love! Posted by Melinda Morgan at 10/05/2012 1 comment: Labels: Cochlear implant activation, cochlear implants, connexin 26, infant toddler cochlear implant Tuesday, August 28, 2012 Lauren's second surgery  [blogger-image-324731489.jpg] Lauren just before her surgery Lauren had her second surgery on August 7. It went so well! The actual urgery took about two hours. We stayed at the hospital until about 9 hours after the surgery. We wanted to let the effects of the anesthesia wear off and make sure she wasn't nauseous and could keep pain medication down. All went well. That night, she ate a regular dinner and played around, walking and crawling normally. One of the possible ide effects is to have balance issues for a few days after the urgery, but we didn't witness any problems with balance at all. I know we are so fortunate that we have had 3 surgeries now, between Taylor and Lauren, all without incident. Considering that when I found out about Taylor's deafness and made the decision to do CI's, the surgery was one of my biggest concerns, I now feel such a relief and want to hare that this really was a blink in their life. And the benefits are  [blogger-image--111757981.jpg] Lauren trying to do "gymnastics" the night of her surgery  We continue to see great progress with Lauren. For the first 6-7 weeks after activation, we used the Hanna Anderson pilot caps to keep her hands from the CI and headband. Since then, she has really been leaving it alone (other than the car seat where the coil gets knocked off anyway). We actually have more trouble keeping Taylor's ears on than Lauren, because Taylor is continuously doing cartwheels and handstands. We are going to harness that energy and have enrolled Taylor in both gymnastics and tumbling this fall. Lauren's activation on the right side is tomorrow. We can't wait to see how excited she is when she can hear with both ears!!  Taylor starts in a new preschool next week. It will be 5 days per week for 2.5 hours in the afternoon. Derek started kindergarten last week. Taylor is really as bored as can be without her big brother, aka side kick since birth... So preschool cannot get here fast enough. Every time I turn my child over to someone new, it's an education process. What is a CI? Can she really not hear without it but still speak normally? Can she hear me from a distance? And wow, how does she talk goes. I try to continually educate and promote the benefits and absolute success of the technology in helping these kids to hear. You never know who it might help or impact along the way. I am so proud of Taylor and where she is at today. We are hoping for a great year!  [blogger-image--1177227727.jpg] Derek and Taylor swimming with Grandpa Posted by Melinda Morgan at 8/28/2012 2 comments: educational activites cochlear toddlers Location: Wichita Wichita Thursday, July 19, 2012 Mama wins again! LAUREN - One down, one to go! It has already been 8 weeks since Lauren's activation. It has gone so moothly. It has really felt very natural for her to begin listening. At first, I noticed her paying attention to our voices, our dog barking, etc. I noticed that if she heard someone laughing, she would turn and look and usually start laughing too. If she heard a sudden noise, she would look up and try to figure out what it was. One of the first big moments was about two weeks post-activation - I was rocking her to sleep for a nap while singing to her, and when I finished the ong, she turned to look at me and see why I stopped. Such a simple thing, yet it spoke volumes to me. Gratitude fills my heart. She is now saying Mmmmm when she wants me and it is getting closer to Maaama. I love it! She also makes a bbbb sound, aaahhh sound, and other imitations such as sneezes, coughs, etc. We are having a great time playing sound games with her. She thinks a lot of sounds are hilarious. I think she loves how her new "ear" helps her keep track of where her big brother and sister are and what they are up to. We are using a headband with loops sewn in to keep the CI in place. Lauren can easily take it off though, so if she gets in that mood, we put a (Hanna Anderson) pilot cap on to limit her access to the ear. With baby eating, that usually means I am washing at least one, if not two, pilot caps each evening to have clean and ready to go for the next day. Lauren started walking this week, so we are now trying to encourage her to take more steps and gain confidence with each day. We have Lauren's right side surgery scheduled for August 7, with activation on August 28. She will have a nice bandage on her head for her 1st brithday, but we are so thankful that she is going to turn 1 with both cochlear implants surgeries completed and a lifetime of listening ahead of her. TAYLOR - Amazingly Brave Taylor is doing great! I will post a video soon of her. She is very into Barbie movies and loves to sing and dance along with the movies. She is now a super swimmer. We have perfected a waterproofing CI/swim cap method that allows her to keep an ear on to hear when she swims with us. Taylor started gymnastics last week... so far, we haven't had any retention issues because we are using the headband. If we do, I think I'll try using the swimcap to really hold the coils on well. Over the weekend, we went to Branson and to Silver Dollar City. Taylor and big brother Derek decided they are "big kids" and wanted to ride the big rides. She was tall enough with an adult, and rode the big roller coasters (PowderKeg), the log ride, another roller coaster, etc. You name it, they rode it. It was great fun for our family! Posted by Melinda Morgan at 7/19/2012 No comments: Recent Pictures Click here to view these pictures larger [111?pageName=sharekey&c1=pictures&c2=blogger] Thursday, May 24, 2012 Lauren's Cochlear Implant Activation Lauren's cochlear implant activation on the left side was yesterday. She did very well. We were able to get a response from her and set the lower limit thresholds with beeps... Then the fun part where we got to talk to her for the first time. It was a breathtaking moment for all of us. She was just curious and had an amused look on her face. Big difference from Taylor's crying when she was activated at 15 months. I think a part of that was that Lauren was only 9.5 months, and Lauren had always worn hearing aids... She at least knew there was such a thing as sound, although it had been very far and distant. Channel 4 in Oklahoma City filmed the activation because it was the earliest surgery and activation ever done in Oklahoma. Here is a link to the new story: http://on.kfor.com/0k3t6vT Youngest Okla. baby to get gift of hearing Taylor and Derek were so excited to see Lauren her new "ear.". What a family moment! We are going to post more pictures later, but we are moving over this weekend. I can't wait to see what the next year has in tore for us. Lauren will be learning to listen, and eventually speak. We are thankful beyond words. Posted by Melinda Morgan at 5/24/2012 2 comments: Labels: Cochlear implant activation, connexin 26, infant toddler cochlear implant, lumps around cochlear implant Monday, April 30, 2012 Taylor's Turn I really wanted to focus on catching you all up on Taylor. We're going to have lots to come on Lauren, since her first CI surgery is only 8 days away. Taylor has had quite a year! She has been in the special ed preschool here in town this year. She loves going to school and seems to have a great time. She sees the deaf educator twice a week and has speech twice a week during her preschool time. We have all seen great improvement in her articulation. She has just learned so much. We are now 5 weeks away from turning 4 years old. We did some testing around the 2 year, 6 month listening age mark. For the Expressive Vocabulary Test and the PPVT, she tested like the average 5 yr 7 mo to 6 year old, respectively, or in the 99th percentile. Amazing. I never would have believed it possible three years ago. What a blessing in my heart as we approach Lauren's urgery. What a year "3" has been! We celebrated her 3rd birthday at Table Rock Lake and Branson. We had family birthday parties at the lake. We rode go-carts and waterslides in Branson, rollercoasters at Silver Dollar City, and took a skiboat out of the lake. The girl is fearless! Last ummer, just as she turned three, she was doing dives and flips into the pool. We utilized a water-proofing and swim cap method for her to use so that she could keep at least one CI on while swimming. It was a great summer. We took a family ski vacation in January. Taylor went to ski school two days, and skiied with us another 3 days. She seems to be a born kiier. I'm going to have to take some lessons myself so that she and Derek don't pass me up in a couple of years. We are moving to a suburb of Wichita next month, so new schools are being explored. The IEP renewal meeting is scheduled for May 11. Next year, we are planning to have her go to a wonderful Christian pre-school for three half-days per week and supplement with some AVT/speech services. We did her testing for the new school district that we are moving to last week, and she did exceptionally well. I think I know more about what to ask for... we'll see. As a parent, I am continually learning more about how to advocate for her and how to describe her uniqueness. Sometimes I wish the CI's were invisible. I don't want CI's to affect other's perception of Taylor. Especially in the academic setting, I don't want the visual reminder to cause teachers to underestimate her abilities. I was really nervous about that last year as she entered the public school system. I'm not sure what their (the teachers) perception of her was at time. I do know that now they realize and acknowledge how well she is doing. I'm thankful to the wonderful ladies that have worked with her this year - Misti, Deb, Ani, Brittney and the para's too (wish I knew all of their names). I have a feeling it won't be too long before Taylor wishes they were invisible. The other day, she said "Mommy, when I grow up, I won't have 'ears' anymore." I hope we find a way to always make it positive as she grows. Even as a toddler/pre-schooler, she is obsessed with growing up and always talking about what that means -- getting married, having a baby (named Lauren), being a doctor (like her daddy), wearing makeup (like her mommy)... you name it, she's thought of it. That day, she had noticed that she had 'ears' and I didn't. We make the 'ears' as cute as possible, with all of the Cochlear decorative covers and headbands matched to her outfits. We'll talk through it more when the time comes. For now, she's pretty excted that her little sister is getting ears just like hers. My favorite words to describe Taylor: Loving Brave Beautiful Brilliant Fun Generous Stubborn [_DSC1438.jpg] Rockstar [IMG_5319.JPG] Taylor with her fish she caught and a turtle at her feet [IMG_5285.JPG] Taylor and Aunt Melissa [IMG_1783.JPG] Taylor and our nanny Sheena Posted by Melinda Morgan at 4/30/2012 Labels: Cochlear implant activation, cochlear implants, congenital deafness, connexin 26, infant toddler cochlear implant Thursday, March 8, 2012 Loving Lauren - Countdown to CI #1 We have had hearing aids since Lauren was about 3 weeks old. We put them on her every day consistently, although it has gotten harder and harder to get her to leave them alone. The hearing aids are Phonak Naida, very powerful but not overly large HA's. They were loaned to us by Hearts for Hearing. Thank you! Since it was known right away that Lauren would ultimately need cochlear implants, this is an interim solution. Hearts for Hearing attempts to provide hearing aids to families who are residents of Oklahoma through donations. In Kansas, or at least in the Wichita area, hearing aids can be provided through the Children's Miracle Network funding. Hearing aids are about $1600, so not a small expense. For kids who are going to get CI's in a few months, it makes sense to take a loaner approach. [IMG_4418.JPG] Lauren's first hearing aid fitting We have had at least one set of earmolds each month. To keep the hearing aids on her head, we originally started out using these little dual-sided sticky tapes called Stick n Stays (made specifically to fit the hearing aids). They are pretty pricey. For the past couple of months, we have switched over to lingerie tape. Ahh, yes, apparently there are many uses for lingerie tape. We are going through it pretty fast because Lauren rips them out about as fast as we can get them put in. It started when she was about 3.5 months old. She has since perfected the technique. I think she knows at this point that she can get our attention if she does that. Sometimes she uses the earmold as a chew toy if we can't get it from her fast enough. [IMG_4867.JPG] Lauren getting earmolds [IMG_4868.JPG] Lauren in Auditory Verbal therapy We have done sound booth testing twice with Lauren. It seems like she might have responded to sound at around 120 dB, but at that point, it could be vibration.... nevertheless, we are seeing minimal or no response with the hearing aids. We are anxiously awaiting the first CI surgery. We expect it to be in mid-May, barring any surprises. That will be at 9 months of age. We have talked with our audiologist, and should have the first activation within two weeks. :) Big Smile! We can't wait for that day. With Taylor, her surgery was bilateral at 14 months, but the activation wasn't for five long weeks after the surgery... it didn't have to be that long, but all of the audiogists schedules were full, so we had to be patient. We had an MRI for Lauren as a prerequisite for surgery. All of the anatomy was normal and there is no other pre-surgery requirement for us beyond insurance pre-approvals. [IMG_4879.JPG] Lauren on the day of her MRI with our friend Dr. Jackson So, although we have a long road ahead of us, Lauren will have access to sound a full 5.5 months earlier than Taylor did... and considering how well Taylor is doing, I am thrilled to know that Lauren's potential hould be unlimited. [IMG_4865.JPG] Taylor and our AVT Tami Big brother Derek loves Lauren. He's never too busy to give her a kiss on the head as he runs by. He has asked some questions about her ears. Now, he's figured out that Taylor's ears and Lauren's ears aren't like his, and he knows that Lauren will eventually have the cochlear implants. [IMG_4593.jpg] Derek and Lauren Taylor is about the best 3-year old big sister that I could have imagined. She dotes on Lauren, is sad and tries to get us to make her feel better when she is crying. She is around Lauren so much that during the couple times that we have left them with a babysitter, Lauren does much better if Taylor is there with her. When Taylor's not in the room with the babysitter, Lauren gets upset. As I reflect back on Taylor's time as a baby, I realize she was probably the same way with Derek. Other than with our every day nanny, I only remember leaving Derek and Taylor with a babysitter once, when he was 2 and she was 10 months. She got really upset because he was scared and upset. [IMG_0084.JPG] Siblings are the Best! As a mother, I am so thankful that my children have each other. Siblings are the best support network. They learn from each other, play together, and most of all, love each other. Posted by Melinda Morgan at 3/08/2012 8 comments: Friday, January 6, 2012 Welcome to the World, Lauren! Well, hello all. It has been a long time since our last update. Pregnancy, working full-time, a new baby with a 3-year old and a 4-year old will do that to a person. Lauren was born on August 9. She weighed 7 lb, 5 oz and was over 20 inches long. She looked like both her brother and her sister. We did the OAE a couple times in the hospital. She didn't pass. At 4 days old, I did a couple unscientific tests of my own, and determined that he was deaf as well. Taylor's genetic testing showed that we are recessive carriers of Connexin 26, so we knew there was a 25% chance. We had an ABR at 6 days old and confirmed profound deafness. She had a no response ABR, as Taylor did. [IMG_4366.JPG] I want to say it was easier finding out the second time around, and it was. But it was still hard too. I think I cried for a few days this time (combining all this with the post-partum hormones didn't help), versus a few months with the diagnosis for Taylor. When we found out about Taylor's deafness, she was already one year old, so I was sad and guilt-ridden about all of the baby moments when she couldn't see me/family, but we thought she could hear us - rear-facing in the car eat, riding in the stroller, singing to her when she was in her crib, and so on. I was also worried and uncertain about what Taylor's future would be. Now, I know there are no limits whatsoever to Taylor's future for social, career, and recreational opportunties. With Lauren, I cried about the times that she would miss hearing as a baby - the lullabies and laughter of her brother and sister and the I Love You's from Mom and Dad. Fortunately, we've been down this road before; we had a plan before she was even born; and we get reminded daily of the wonderful future ahead of Lauren, because we live it every day with her big sister. And I know those baby moments that she'll "miss", like lullabies, etc. -- she will never know for a second that he missed anything. [IMG_4726.JPG] Lauren, December 2011 When we got home on the evening of Lauren's official diagnosis, I pulled out Taylor's baby book from birth to age 1, and looked at picture after picture of a happy, smiling baby. We didn't know she was deaf at that point, and Taylor certainly didn't think she was missing a thing! It made me feel so much better. Today, I am nothing but thankful for my healthy and beautiful children. I am grateful that we get to parent Lauren. I know that she will also be an amazingly example of deafness, and overcoming challenges in general... and through perserverance and hard work, anything is possible for these children. Of course, the right surgeon, mappings, and therapy all help. Getting them access to sound is the key, and the learning will happen. We have had hearing aids for Lauren since around 3 weeks of age. I keep them on her as much as possible. She is almost 5 months old, so he is awake and up more all the time, making it easier and easier. I have seen her respond to sound a few times, so I know they are providing some access to sound. To what extent, I don't know. We know the end result with her diagnosis is bilateral cochlear implantation. We have met with the surgeon and are working on that timeline. In the meantime, if any access to sound can be provided through the hearing aids, we are going to do our best. [IMG_4798.jpg] Taylor, Crazy Christmas Headband Taylor is now 3 and a half. She has been in the local preschool since September. She loves it and is doing extremely well. Her vocabulary is impressive and she regularly says 7-word or longer sentences. She has become quite the performer. She loves to have an audience so that she can entertain by singing, dancing and telling stories. Her articulation continues to improve. We are at the point now where almost anyone can understand what she is saying, and certainly if they have the context of the discussion. The funny part is that now Taylor likes to do a lot of [IMG_4786.jpg] Taylor, Christmas Day 2011 [IMG_4788.jpg] Putting on a show! pretend-play and story-telling. So we get a lot of "well, I thought that was what she said but I didn't think that was true..." Ahh, the true joy of having a 3-year old. She is amazing. A few recent examples - as we left her dance class, "Mommy, it's dark outside. I need to turn on my flashlight so that I can see better." "Mommy, I like your bed. I don't want to sleep in my bed -- there are monsters in my room. I'm scared" (complete with a shudder). We are having all of the typical discussions you would want to have with a 3-year old. More to come soon... I won't take such a long blog-cation again. Posted by Melinda Morgan at 1/06/2012 8 comments: Labels: connexin 26, infant toddler cochlear implant, newborn abr Thursday, April 21, 2011 IEP, Milestones and Moments It's been on my to do list for about two months now to write another blog post... sometimes the busier we are, the more there is to write about, but the less time there is to do the writing. Taylor continues to progress very well. Just in the past week, she ordered her own Sprite when we were at a restaurant. My phone was in my purse between the two of us at the restaurant. When it rang, she heard it first and said "Mommy's phone." We had a mapping recently and he was able to detect sound down to 5 dB. It was a sound I barely was able to detect. Absolutely amazing! So that brings me to the current challenge - Taylor is six weeks away from turning 3, so we are going through the IEP process with the local chool district. Derek has gone to a local church preschool for the past year. He is currently 4, so still has one more year of preschool. We considered sending her to the preschool that he has been attending. Our local school district has a preschool for special needs children that starts at age 3. We observed those two classrooms and tried to get a feel for what it was like and how they compare. We feel that the chool district's preschool is going to be the best place for Taylor. There is a special ed teacher plus multiple para's, which gets the adult to student ratio down to 1:4. In the church preschool, there is one teacher for 12 students. The school's program allows us access to the speech pathologist, audiologist, deaf educator, and it is also in the same building and on the same schedule as the class that Derek can attend. But what do we put on the IEP? She hears within normal levels... even in restaurants or other loud settings, we see her respond to sounds at least as well as we do (if not better). So she's technically deaf, but hears very well and doesn't need to read lips or have an FM system. Her language comprehension is on track and age-appropriate. Her expressive language is age-appropriate as well, and her articulation continues to improve. Any advice from other parents would be great! Tonight, she said to me "I'm ready to go watch a movie." All of those words! What a sentence. We've been trying to encourage her to get the "little" words in there, such as to, a, on, the, etc. We have been working with her on past tense and prepositions. She gets it, but unfortunately she has to speak the English language, which means the rules don't always apply. For example, she said "I find-ed it!" I'm excited that she made it past tense, but now have to correct her with "You found it!" :) [IMG_3638.jpg] We have taken a couple family trips since the last blog post. On our ki trip, we tried to get Taylor to ski, and asked her if she wanted to be a "ski bunny". She replied that she wanted to see the bunny ski. Silly us! She wears a dress or skirt almost every day -- we had to force her to wear sweats or jeans there. Derek is usually a little more reserved than Taylor, but we were able to get him on the slopes all 3 days. What a good sport! [IMG_3636.JPG] We went to Orlando last week for our early summer vacation, since we have baby #3 on the way. Taylor swam like a fish, but got a little too comfortable having her ears off. She can now tell us whatever she needs to -- like "I want a drink"... "not that drink"... "apple juice"... and "I need a towel!" Why would she need to hear us say things like "don't jump in from there!" and "it's time to come inside"? We sign minimally and I used it as much as I could for the times that he was in the pool. It made me wish I knew more signing, but I was also impressed that she could read my lips (and expressions) quite well. It felt a little like charades at times. We are a family that likes to swim and boat a lot. I realize that I am going to have to improve our family's signing in order to make those times a little more enjoyable (for the parents... I think Taylor loved not having to listen to us for a while!) [IMG_3803.JPG] Magic Kingdom carousel [IMG_3782.JPG] Magic Kingdom [IMG_3777.JPG] Downtown Disney Posted by Melinda Morgan at 4/21/2011 2 comments: Tuesday, February 8, 2011 Genetics of Deafness [Picture+016.jpg] Taylor has Connexin 26. This means that Jon and I are recessive carriers of Connexin 26. What is Connexin 26? Connexin 26 (Cx26) is a protein found on the (GJB2) gene and is the most common cause of congenital sensorineural hearing loss. Connexin 26 mutations are responsible for at least 20% of all genetic hearing loss and 10% of all childhood hearing loss. In some ethnic populations, more than 80 percent of cases of nonsyndromic recessive deafness result from a mutated Connexin 26 gene. Children born with bilateral (both ears) evere to profound sensorineural hearing losses are typically referred for genetic testing for Connexin 26 mutations. Connexin 26 mutations are genetically transmitted from parent to child in a recessive manner, which means that an affected individual must inherit one copy of the non-functioning gene from each parent. Carriers who only have one copy of the gene (i.e. one normal gene and one mutated gene) do not manifest any of the signs of the condition, but have a 1 in 2 chance of passing on the defective gene to their children (who would then also be carriers only), and a 1 in 4 chance of having an affected child if the other parent is also a carrier. This explains how Derek can hear perfectly, as Jon and I do. Connexin 26 mutations are non-syndromic, meaning that the mutation produces only isolated hearing loss. There is NO increased risk for other medical problems that are commonly associated with hearing loss uch as blindness, thyroid problems, kidney problems, or balance disorders. However, there is in a minority of cases a higher incidence of skin disorders in patients with a Connexin 26 mutation. This is the Best Part of knowing it's Connexin 26! No associated issues with the deafness! Connexin 26 mutations produce a pre-lingual hearing loss, because it affects the child before they are old enough to develop speech. Why do we need Connexin 26 to hear? The GJB2 gene contains the instructions for manufacturing a number of proteins, including Connexin 26. Connexin proteins in general are called “gap-junction proteins” which are necessary for cells to communicate with each other. Without sufficient levels of Connexin 26, the potassium flow from hair cells in the cochlea is disrupted, resulting in extremely high levels of potassium in the Corti s organ, leading to the profound sensorineural hearing loss. Connexin 26 mutations occur primarily in Caucasians, Ashkenazi Jews, and some Asian populations. This seems like old news, since we found out about this with Taylor within a month or so of finding out she was deaf. Now, we have another baby on the way and the worry starts anew in that this time we know there's a 25% chance. Thankfully, we know what to do and how to find out this time... I pulled this information from the California Ear Institute website. Harvard's Genetics of Deafness center has a great pamphlet of information that we found to be helpful when we confirmed the Connexin 26. http://hearing.harvard.edu/info/GeneticDeafnessBookletV2.pdf Posted by Melinda Morgan at 2/08/2011 4 comments: Older Posts Home Subscribe to: Posts (Atom) Taylor, Spring 2013 Subscribe To [arrow_dropdown.gif] Posts [subscribe-netvibes.png] [subscribe-yahoo.png] [icon_feed12.png] Atom [arrow_dropdown.gif] All Comments Search This Blog Loading... Followers About Me My Photo Melinda Morgan View my complete profile Blog Archive Ethereal template. Powered by Blogger. Extraordinary Ears - RSS Taylor and Lauren's Extraordinary Ears This is story of our daughters Taylor and Lauren, both with profound hearing loss, and the journey of getting and utilizing cochlear implants. Both have congenital deafness due to the Connexin 26 gene mutation. Wednesday, December 29, 2010 2010 in Review [IMG_3202.jpg] What a difference a year makes! Last December, Taylor had been hearing only 3 months and her main word at that point was "Mama." This December, I find it hard to list a word that she couldn't say. Some of her accomplishments over the past year include: go?" "Where is my Jacket?" Cookies. mean car, funny Daddy) at this point) Cows, Horses, Boots, etc. dancing. The list goes on and on. Here are a few recent videos of Taylor. Our Little Dancer (October 2010) [EMBED] video Repeating (and Anticipating) Ling Sounds in Therapy (October 2010) As I reflect on the past year, I am thankful for the therapy and ervices that we have received from Hearts for Hearing in Oklahoma City and Via Christi in Wichita. I am thankful for flexible work schedules for both my husband and I that have allowed us to get Taylor to weekly appointments for the past year. I have greatly appreciated my husband's parents and sisters, who have helped us with babysitting, meals, and a place to stay during our trips to Oklahoma City. The Blog Comments along the way have been a welcome surprise! I'm so glad that Derek has been a good sport in this past year, helping Taylor to learn new words, helping to keep track of the "ears" when they fall off, and celebrating with us by announcing "Mom, Taylor Said XXX!" I'm grateful to have a husband (10 Years Today!) who was willing to sacrifice, work and worry along with me. And most of all, I'm thankful for Taylor, whose wonderful enthusiasm and attitude have allowed her to excel with language in spite of the challenge of deafness. [IMG_3348.JPG] [IMG_3203.JPG] Posted by Melinda Morgan at 12/29/2010 2 comments: Sunday, November 7, 2010 Taylor is a Tough One! Subtitle: Don't Mess with My Brother [Derek+Taylor+Bath+BW.jpg] Ahhhh, immunizations. Is there anything less enjoyable for a parent? For both kids, I've taken them to the vast majority of their immunizations. Dad's turn! This past week, Jon had an afternoon open and decided to take the kids in for their flu shots. Derek also needed another immunization, for a total of two shots. Jon takes the kids in together to the shot room. Three nurses come in. Two have syringes; the other is there to help hold Derek. Jon and that nurse are holding Derek down, with him screaming his little head off. Right as the other nurses try to give Derek his shots, Taylor decides to take action. She screams "NOOOOO" and rips one of the syringes out of his leg. Derek got a 3-inch scratch on his leg and we're not entirely sure if he got the flu shot as intended. Jon had to go after Taylor and attempt to confiscate the syringe and needle, which he somehow bent and did not want to relinquish. Needless to say, Taylor had to get her own flu shot after that and I'm sure she didn't go quietly. Derek was too busy nursing his own wounds to attempt to rescue her. Dad was a little frazzled when he called me to tell me the tory. [Derek+pushing+Taylor+Swing.jpg] Aren't siblings the best? I love that Taylor is protective of Derek. Don't worry, Derek - your little sister will defend you. I have 3 isters, and I remember more than a few times that I took on a battle on their behalf. We hope someday that Derek will have it in him to help out when the other kids notice Taylor's "ears"... although I'm quite sure that she'll be taking care of herself. My little two-year-old tried to take on 4 adults to defend her brother. What a tory! [Derek+Taylor+truck.JPG] Posted by Melinda Morgan at 11/07/2010 1 comment: Mom's Turn - Traveblog Well, I've taken quite a vacation from this... Life has been crazy for us lately, and though I've had many blog ideas in the past month, I haven't been able to get them posted. I have been traveling extensively for work, the only upside from that being that I've accumulated mileage status on Delta such that I'm getting free upgrades. Sweet! Warm towel? Yes, please... Would you like omething to drink? Yes, please... Another bag of peanuts? Sure. Last April (2009), we began having issues with a particular customer in Miami, Florida. Since then, my business travel has really picked up. Here is a list of the travel that I've had since April 2009. A few of these are personal; most of them are business... and interspersed with these trips are the weekly trips to Oklahoma City for Taylor's therapy. Miami Atlanta Columbia, SC Cary, NC Phoenix Orlando Las Vegas Branson Denver Jacksonville, FL Kansas City Birmingham, AL Chicago Sacramento, San Francisco, Napa, Carmel Tampa Dallas Jacksonville Milwaukee Miami (4 times in 5 weeks) Canon City & Breckenridge And this week, I am headed to Detroit. Good thing I broke down and ordered a Samsonite Spinner. I have calluses on my hands from dragging my suitcase and laptop bag through the airport. Samsonite xSpace 21.5" Expandable Spinner Carry-On in MARS Red Posted by Melinda Morgan at 11/07/2010 No comments: Sunday, September 19, 2010 Lumps around the CI Last Thursday, I took Taylor back to the Hough Ear Institute. We always try to watch the implant area closely for redness or irritation. Occasionally, infections can occur. Taylor's dad noticed when putting on the coil that there was a lump right below the CI on her head. It felt like a cyst. We were able to get right in with our surgeon and had him take a look. He found two lumps, and started asking me about bug bites, etc. because he thought it was swollen lymph nodes associated with a skin irritation. I remembered that while we were on vacation, my mom had put Taylor's hair in pigtails and we found a little seed tick on the back on her head near that area. It was from that tick!! I hate ticks but what a celebration to know that all is well with the cochlear implant. :) Posted by Melinda Morgan at 9/19/2010 No comments: Labels: lumps around cochlear implant One Year Earniversary and Conversations with Taylor We recently passed the one-year mark since Taylor's bilateral CI activation. What a year it was! We made at least 40 trips to Oklahoma City for therapy and mapping appointments. That would be about 320 hours in the car and 19,000 miles on the road. I can pour chocolate milk in a sippy cup and hand out snacks while driving on the Interstate... and I can really extend an arm to save the CI's from being dismantled when boredom takes over. I think I've put off writing this blog because the one year anniversary of CI's requires a special note and brings back a lot of emotion from that time one year ago when I wrote "Just as You Are...", hoping for so much, but content with my wonderful little deaf girl as well. Taylor's expressive language is exploding right now, as Derek's did after his second birthday. She is getting pronouns - will look at a picture of herself and say "me." She will hold the camera and say "cheese!" I can get her to "parrot" me. For example, when reading an alphabet book recently, I would say a letter and she would attempt to repeat it before I went on to read the dialogue associated with that letter. She can point out almost all colors when we name them, and can ay most of them herself. A recent shopping trip went like this -- "Look! Yellow! Blue, Green, Red, White." She identified the colors to me as she found them. She will ask for a bath before bedtime and a hot dog if she is hungry (her favorite food). She is also into counting till, and now she makes it to about six. We can have conversations, which is really fun. On Saturday, I asked her if she wanted to watch a movie. She said "Tutu movie" --translation - her ballerina movie. I looked in the cabinet and it wasn't there so I asked her where it was. She said, "Right here, Come on" and then walked into my bedroom to show me it. Here are some recent vacation pictures. [IMG_2784.JPG] Swimmers! [IMG_2773.JPG] Helping Daddy Drive the Boat [IMG_2786.JPG] A good place for a nap [IMG_2746.jpg] I love to Swing! [IMG_2743.JPG] Derek Loves to Swing too! [IMG_2738.JPG] Check out my Barbie fishing pole. Sunday, August 15, 2010 Confidence! [260+ek+5x7.jpg] What's it mean to be a good Mom? Or a good Dad? What determines "Success"? One of my most important parenting goals is to raise children who can go out into the world with confidence. [DSC00212.JPG] I had a great teacher of confidence and self-esteem - my Mom. From my earliest memories, I remember that if I ever expressed any self-doubt, my Mom would reassure me and not let me put myself down. As we drove down the road when I was 3 or so, I was reading the Speed Limit signs, Stop signs, etc. My mom said something about me "reading". I said "I can't read!" She said, "Yes, you can! You're reading the signs right now!" And I realized, sure enough, Mom was right. That was the beginning of how my Mom taught me to have confidence. From water-skiing at age seven, to entering spelling bees and track meets, taking gymnastics, and playing softball, any time I thought I couldn't do it, wasn't good enough, or that someone else was better, my mom would let me know that I could do anything I wanted to. Somewhere along the way, it worked. My sisters and I are all doing pretty well now. Thanks MOM! [DSCF0510.JPG] Taylor swimming at Papa and Grandma's House As a parent, any time your child faces a challenge, you have a choice to make... do you coddle them in case they fail and get hurt? or do you encourage them and let them know that you have confidence in them to be uccessful? [DSCF0509.JPG] Derek swimming at Papa and Grandma's house In early life, these are usually physical challenges... the first teps, first climbs, sitting in a big chair rather than the high chair, going down stairs, riding a tricycle, swimming, riding a bicycle with training wheels, doing a somersault. Every single one of these is an opportunity to instill confidence in your child. Mastering physical challenges in early childhood helps a child gain self-esteem that will translate across all of life's greater challenges. [IMG_2692.JPG] Derek on the trampoline [IMG_2575.JPG] Taylor at swimming lessons, June 2010 [DSCF0455.JPG] Derek hanging out on Papa's Ranger [IMG_2615.JPG] Derek & Taylor in the airplane to Taylor's therapy appt [IMG_2709.JPG] Taylor doing the Trampoline Bungee at A Grape Event, Hearts for Hearing fundraiser at Plymouth Valley Cellars Posted by Melinda Morgan at 8/15/2010 No comments: Little Miss Manners [Jun-Jul+09+176.jpg] Taylor's surgery was one year ago this week. That was the scariest, most exciting day in my life. If it's possible to feel a mix of accomplishment, dread, worry, elation, agony, and anticipation, all rolled up into one big ball of nerves, that was surgery day for me. Taylor's Dad, on the other hand, was pretty calm, all things considered. He does surgery for his profession, so it wasn't as intimidating for him as it was for me. Some friends of ours have a surgery day coming up soon for their little guy. They came to visit us recently and we tried to prepare them and reassure them of the good things in store for them and their son. Thinking of how far we have come in this past year brings tears of joy to my eyes. Sharing Taylor's successes with another family was so wonderful. If we helped them in any way worry less, hurt less, or know that their son will have an amazing life, then we are thrilled to be able to do that. These are some of Taylor's recent accomplishments: Burp, saying "excuse me" (She must have gotten that from her father.) Sneeze, babysitter says "bless you", Taylor replies "thank you!" At a drive-in restaurant, a guy walks by and she says "Who's that?" followed by "Where's my Hot Dog?" She is doing lots of requesting, mainly around food. "Hot dog, apple juice, candy, drink" Last night, she smelled my glass of wine and said "Mommy juice." Exactly right and stay away, please! There are also many questions. "Where'd Daddy go?" "Where's Derek" "What's that?" I'm waiting for the "Why"'s to begin. No hurry there. We're in a tage of "MINE"! If Derek or any other child touches Taylor's food, toys, chair, shoes, etc. (on down the list), there are a flurry of MINE's that come out of her mouth. Pretty typical of a 2-year old. I have to admit that we as parents have been a little softer on Taylor than we were on Derek for that kind of behavior. Let's face it... if he didn't hear until she was 15 months, we had to give her some catch-up time before we felt like she understood at her appropriate age level what we were saying. Then, we went through a period of feeling glad she could say anything, even if it was "No" and "Mine" over and over again. Now, Taylor Kay, I have to warn you -- Mommy and Daddy know you know what we're saying and and we are going to be tough critics from now on!! Love, Your MOM and DAD (not softies) [227+ek+8x10_2.jpg] Tuesday, July 20, 2010 Taylor's Tribute Video 2nd Bday [EMBED] Posted by Melinda Morgan at 7/20/2010 No comments: Monday, July 12, 2010 Summer Fun Summer has been a busy time at our house! It is just flying by. [IMG00012.jpg] We got the rechargeable battery packs for Taylor’s Nucleus 5 processors. They are the exact same size as the regular battery packs, with them. Saturday was the best day! We got to let Taylor go wimming/splashing in a small pool for hours and hours with our neighbor’s grandkids, with her ears on! No problem, no (well, minimal) worries. With the new rechargeable batteries, they are approved to be water-submersible. At this point, Taylor doesn’t go under water. She runs and splashes around in the pool. Being able to have her “ears” on puts us both more at ease. We did swimming lessons the week before the 4th of July. Both Derek and Taylor did really well. Derek, at 3.5 years, is swimming around really well with his life jacket on. Taylor, at just over 2, is really brave and will jump off the diving board or into the pool from the side. She has a harder time controlling her swimming movements with only the life jacket on if no one is holding the jacket. But the best part is, they both love swimming and playing in the water. We went to see my parents for the 4th of July. I have 3 sisters and they were all there with their husbands, kids and Yorkies… we are a Yorkie family. One of my sisters just got a new puppy. Her name is Kona and she is adorable. [Kona.JPG] Taylor knew she was a “baby” puppy and went easy on her thankfully. Maverick, our Yorkie, usually is getting carted around and chased. He gets away from her more easily than Mikea, our cat. Mikea will amazingly put up with quite a bit of handling from Taylor and Derek. [kidsss.jpg] Taylor keeps adding words, including tractor (followed by Yeah!) and more food words, more often. i.e.Cookie, Candy, Hot Dog, etc. She is a real eater and gets pretty excited about her meals and snacks. She also knows her manners and that if she really wants something from Mommy, "Ppppleaase." She's got that one down! Taylor has had so many new cool experiences this summer. She spent the weekend at Papa's farm and got to help feed the cows. She has ridden in a tractor and a combine. Loved that. She has gone to Tanganika wildlife park near Wichita, where she fed lemurs and climbed to (I'm told) the tallest slide ever. I'm hoping to add some pictures of that oon. Our family is pretty active and outdoorsy in general, and we eem to never be indoors during the summer. But when we are, Taylor has mastered riding her tricycle. It is so cute. Of course, as with all of her toys, they are old news for big brother Derek until she likes them... then he wants to fight to get them back. However, with all of this outdoor fun, maybe we should be reading more with Taylor... but I know that all of the outdoor experiences -- watering flowers/spraying our dog Maverick, ant-stomping, flower picking -- create learning opportunities as well. As always, we are thankful to have Derek as her big brother and role model. We hope that she continues to learn from him, just not every little thing he does. You'll see what I mean.... [IMG00007.jpg] Posted by Melinda Morgan at 7/12/2010 No comments: Labels: educational activites cochlear toddlers Tuesday, June 29, 2010 Rechargeables! Yahoo! So, big news! I found out that the Nucleus 5 rechargeable battery packs have been approved by the FDA... last week. They are approved to be water-submersible. Cochlear should start sending them out soon! Just in time for swimming season --- nah, probably not, but one can hope. Speaking of swimming, Taylor is becoming more of a swimmer. She is in wimming lessons this week. She really likes playing in the water, but it is going to be a challenge to help her learn how to swim until she can wear her ears in the water. She is sooooo observant though - she already does a pretty good job of moving herself around wearing her infant life jacket. Last weekend, we swam all weekend in the grandparents' pool. She got a lot of practice. Taylor had her 4th mapping appointment last Thursday. It went really well. The audiologist was able to map 7 electrodes on the right side and 5 electrodes on the left, interpolating to the other electrodes (there are 22 on each side.) After her mapping, we went in the oundbooth. Taylor was able to respond to sounds at 10 dB. A normal hearing person begins to hear sound between 0 and 20 dB. From a noise level perspective, she can hear very quiet sounds. Taylor's latest skill is counting -- sometimes we say "one, two" and he adds the "three." Sometimes she says "one, two, three" with us. When we ask her how old she is, sometimes she says "two" while holding up four fingers. Other times, she says "three!" She just likes saying Three. Usually it's followed by a jump or somersault. One, two, three - Jump! One, two, three - somersault! There's always a lot of physical activity happening in our house. We have been doing Y week for the last couple of weeks. http://www.cochlearamericas.com/PDFs/Speech_Sounds_Y_Semivowel.pdf I find it interesting that y and qu sounds are both included in the Y week. Some good ones: Yum-yum, Vacuum, Tortilla, Quesadilla. Currently, hot dogs are out of favor and quesadillas are Taylor's current fave. She even tries to say it. I'd say she gets the number of syllables right, but that's it. She has started saying more words, including Me, Mine, Tay (as she points at herself). One, Two, Three. Cookie, Pizza, a lot of these she has been saying for a while. There is more and more every day. At every therapy appointment, the therapist goes through the Ling ounds and asks Taylor to let us know if she heard them. Aa, ee, oo, mm, ss, and sh. http://www.advancedbionics.com/UserFiles/File/Ling_Six_Sound_Check-6.pd f Taylor has started imitating the sounds back to the therapist. She even covers her mouth to the hide the lip position and movement. It is too cute! Posted by Melinda Morgan at 6/29/2010 No comments: Labels: educational activites cochlear toddlers, ling sounds Thursday, June 10, 2010 W Week and what? So many words... We did "W' week for the past two weeks. It has been fun! http://hope.cochlearamericas.com/sites/default/files/Speech_Sounds_W_Se mivowel.pdf Wow! is a favorite word of Taylor's. Some of her new words and phrases are: Where are you? Right there. Sheena Come here. Choo choo train Love you What's that? Candy Cereal Did you notice that? She's adding more verbs! Yeah! We had her second birthday party this past weekend. It was a wonderful time. She got a Barbie bike with training wheels, dancing tutu's and outfits, a Bitty Baby American Girl doll, and several other outfits and toys. [IMG_2542.JPG] Although she really loves her Bitty Baby, you will see from the following pictures that this birthday was all about Frosting! I made carrot cake cupcakes with cream cheese frosting. Taylor tried to eat the frosting off of as many cupcakes as she could get her fingers into. I also made the famous family chocolate birthday cake, but mixed it up a little bit with a ganache topping. It was lovely, but entirely too much effort for her when frosting was clearly her favorite. Next year, it's a can of Betty Crocker cream cheese frosting for Taylor... the guests will have to fend for themselves! Or maybe I should admit now that I am a chocolate lover and the chocolate might have been mainly for myself. :) [IMG_2548.JPG] [IMG_2550.JPG] [IMG_2551.JPG] [IMG_2554.JPG] Yesterday was the one-year anniversary of when we found out that Taylor was profoundly deaf. I look back on the past year with amazement of the journey that our family has been on. From sorrow, grief and guilt to joy, gratitude, and determination, we have experienced it all this year. How can you not love this kid? Streaking around the house naked and busting into a bag of Daylight Donuts, she is so full of life, energy, enthusiasm, intelligence and affection, I am nothing but thankful for getting to be her mom. [IMG_2527.JPG] Next word -- DONUTS! Posted by Melinda Morgan at 6/10/2010 No comments: Monday, May 24, 2010 K Week Taylor is doing really well. She had a great time with the grandparents. She is talking more and more. At 8 months post-activation, her receptive language is solidly in the 18 to 21 months range, with some skills in the 21 to 24 month range. In terms of speech, she is falling in the 18 to 21 month range. This is wonderful with only 8.5 months of listening age. This is the link for last week's G lesson. http://www.cochlearamericas.com/PDFs/Speech_Sounds_G_Plosive.pdf For the current week, we are doing K. Taylor loves kitties! They are her favorite animal. We are going to try to focus on helping her learn verbs. Right now, she uses many nouns, but the only real verb she says is Go. We are going to try to expand that list, and hopefully using kitties in some role play with help us keep her engaged. [IMG_2431.JPG] http://www.cochlearamericas.com/PDFs/Speech_Sounds_K_Plosive.pdf Posted by Melinda Morgan at 5/24/2010 No comments: Wednesday, May 12, 2010 G is for Grandparents! This week, we've been working on G's! Derek and Taylor are staying with two sets of grandparents this weekend. They are geared up and ready to go! I found this on another blog and thought it was great for Mother's Day. HERE’S TO THE MOMS Here’s to the Moms who may not have “signed up” to parent a deaf or hard of hearing child, but do so anyway with grace and love. Here’s to the Moms who narrate every second of every day, not caring what others may think. Here’s to the Moms who put miles on their cars driving back and forth to countless therapy sessions, doctor’s appointments, hearing aid fittings, cochlear implant mappings, and more. Here’s to the Moms who work hard to be their child’s best advocate and primary language role model. Here’s to the Moms who have had to learn a new language too fast full of Auditory Verbal/Auditory Oral terms and audiological jargon. Here’s to the Moms who face the “experts” and fight for their child’s best interest in IFSP/IEP meetings and in those meetings where you are just trying to make the system better. Here’s to the Moms who can wrestle two CIs or HAs onto a squirming toddler… and replace it 20-40 times each day, even in the car, without loosing their cool. Here’s to the Moms who can cook dinner, answer the phone, and change a CI/HA battery without breaking a sweat. Here’s to the Moms who constantly have to explain their child’s “equipment” and answer the question "are those forever?" Here’s to the Moms who have ever felt the pain of having a child who is “different”. Here’s to the Moms who never take a single word for granted. Here’s to the Moms who never fail to astound me with their capacity to persevere… and to love. Posted by Melinda Morgan at 5/12/2010 5 comments: Sunday, May 9, 2010 F Week, Flu, and Fun We have focused on F words for the two weeks. We've also been a sick house for the past 9 days. We missed Taylor's therapy appointment this week. Both kids have been sick and running fevers off and on. They have pretty bad coughs and no appetite. We're pretty sure it's the influenza, but keeping in the spirit of F words, the FLU. Taylor's fever got up to 101 degrees at one point. With all that she's gone through, this is the first time she's been sick other than a mild cold with runny nose. Even with the illness, Taylor has said so many new things. Puppy Ut oh Okay? ...she asked of Derek after he fell down. Thank You Derek! Sleep Choo (as she saw a train) Where'd it go? Yuck Bird Binky Drink It seems like she is adding multiple new words every day and it's harder for us to keep track. That's a good problem to have! Today, we are 8 months post-activation. Happy Mother's Day! Posted by Melinda Morgan at 5/09/2010 1 comment: Monday, April 26, 2010 M Week and Life Lessons We spent two weeks on M week. What can I say? Lots of important M words... Of course, Mama is at the top of the list. I will remember every day for the rest of my life that was the first sound that Taylor made that sounded anything like a word - Mama - at 4 weeks post-activation. Now, Taylor knows who her Mama is without question. She has perfected saying "Mama" for several months now. She has a beautiful "Meow", which she does as she follows our cat Mikea around the house. She can say Mikea, but it more often comes out as the Kay-ah part. She also tries to call our dog, Maverick. She'll pat herself on the leg and go "Mav, Mav." At our last therapy appointment, she cracked up Daddy and the therapist by saying "Oh My Gosh." She helped Daddy mow the yard. I can't believe she tolerates riding on the mower with her "ears" on, but I guess it doesn't bother her. Last week, my husband took her to the grocery store and she said "hi" to everyone she saw. Several people said hi back. It's amazing... you just want to say -- hello, my deaf daughter just said hi to you. and she's not even two yet! It is so cool to witness her truly enjoying her own ability to communicate. There are some times as a parent when it is really nice that she can communicate verbally. It is still weird to me, but Taylor makes the ame sounds and words now with and without her ears on. Sometimes, she talks to herself quite a bit and we can listen to her through the baby monitor without her realizing it. Last weekend, we put her down for her nap around 2:30... didn't want it to be much later and have her up until 10 p.m. She just wouldn't give it up and fall asleep though. We were puzzled until I heard her go "Eeewwww. Peee Youuuu. Eeewwww." I looked at her Dad and said "she's poopy." Sure enough, I run up there -- Poop up her back, on her sheets, blankets and bumpy. I'm just glad he hadn't gotten to the point of sticking her hands in it and wiping it on something else. And so it goes... I always have to throw in a little story on Derek too. He's the 3-year-old ruler of the universe, if you ask him. As of two weeks ago, Derek is a champion pooper on the toilet, after 10 months of #1 on the toilet, and no #2, we have total success! We were taking the kids out and about one evening and offered to go to a park close to home. The other option was to go Home. Derek says "well, I don't like my choices!" He's THREE! Welcome to the real world. One life lesson down, one million to go. He is so funny... a great big brother in some many ways. I hope Taylor keeps learning from him, just not quite in every way. Posted by Melinda Morgan at 4/26/2010 1 comment: Sunday, April 11, 2010 Oh SH! [IMG_2357.JPG] This week, we did SH! Lots of Shhhh! For starters, Derek stepped in a big pile of this bull mastiff's sh** (I mean, poop.) [IMG_2334.JPG] We washed our hair with shampoo and applied lotion. We put on our hirts, shoes, and shorts, and brushed our teeth. It finally was warm enough for some shorts. [IMG_2345.JPG] We got to look at our shadows outside and Shake our whole bodies to the tune of Little Einsteins. We tried to encourage sharing as we toasted marshmallows. We took out the trash and washed the cars. We finally finished all of Taylor's immunzations. (Don't forget that the words with "tion" are also SH words.) We still had a few 12-18 months shots left, but they are all done as of Friday. Yeah! No more until kindergarten. We visited to local Wildlife and Parks museum to get up close and personal with some fish. Today's Sunday; maybe we can go get a milkshake later. http://www.cochlearamericas.com/PDFs/Speech_Sounds_SH_Fricative.pdf I have to say, there are a lot more words with SH than I ever realized. It was a fun week. Taylor is talking more and making more ounds all the time. She had one great day filled with "Dada" this weekend. Maybe D week is paying off a couple weeks later. [IMG_2348.JPG] Posted by Melinda Morgan at 4/11/2010 1 comment: Wednesday, April 7, 2010 D Week! Hoping for More Dada's Last week was D week at our house. We brought out everything D, including lots of time with Daddy since it was Easter weekend. We danced, dipped our hot dogs in ketchup, and road lots of rides at Silver Dollar City. [IMG_2285.JPG] Oh, yeah, another D... We drove, and drove, and drove some more. We drove from Kansas, to Oklahoma for a therapy appointment, and then we drove on to Missouri, then back to Kansas on Sunday. We are thankful for the big D in our lives at these times, namely the DVD! It helps to make the drives bearable. Here is the link to the Speech Sounds D week. It is fun! http://www.cochlearamericas.com/PDFs/Speech_Sounds_D_Plosive.pdf We played with dolls, talked about dirty diapers, watched the ducks, and fed the dog. I think Taylor spent half of the weekend chasing my mom's dog. She had a great time with him. We have a dog who is around five years old. My mom's dog is still a puppy, and he had the best time running from Derek and Taylor. Posted by Melinda Morgan at 4/07/2010 No comments: Wednesday, March 24, 2010 P WEEK It's "P" Week at our house! Well, it started with the kids on Sunday before I had even announced it was "P" Week. Taylor is really good at fighting while getting her diaper changed, and a poopy diaper fight resulted in my getting a poopy bottom flipping over in my face and getting poop smeared on my chin. As I'm finishing the cleanup from that, Derek wants me to assist him in the bathroom because he has decided to start peeing standing up, rather than itting, and has peed all over the seat and floor. I had rushed away from Taylor before getting a fresh diaper on her, and when I came back to her, she had peed on my bed. Later that day, Derek peed on the floor in the bathroom two more times while trying to figure out how to pee standing. Why he decided to start it on that day when his dad was at work is beyond me. And this was all in one afternoon. The next day, we annouced it was "P" Week. The Cochlear website has ome really helpful educational materials, including Speech Sounds. Please see the attached link: http://www.cochlearamericas.com/Support/2294.asp It has a weekly/bi-weekly instruction guide for various consonants, complete with associated activities, words, books, songs, foods, etc. It is great! We are going to cover a consonant per week. It is working double-duty for both Taylor and Derek (age 3). As I said, this is P week. Our dog Maverick celebrated on Monday by eating a mouse/rat/baby rabbit and then PUKING in our house. The P's continue... On Tuesday, Derek started at Pre-school. He was terrified when getting dropped off, but perfectly happy about preschool when I picked him up. So far this week, we have Popped bubbles Ate pizza, pineapple, and peanut butter Napped! Peeled carrots Listened to a purple piccolo dinosaur on Little Einstein's Hopped like a frog Poured Sand Ate Spaghetti Wiped Up Patted and clapped to music Played with a Purse and experienced Pee, Puke, and Poop. We are loving P week and all of the language learning opportunities and ideas that it is giving us. Check it out! 19 weeks to go! Posted by Melinda Morgan at 3/24/2010 2 comments: Monday, March 15, 2010 Bling It! and More Words Taylor is a girly-girl! We like to decorate her headbands and CI covers to go with her outfits. We have quite a collection of headbands now, and have 4 sets of the CI covers so far. See the "Hoorah for Headbands" blog for more information on the headbands. Taylor is talking more. She is saying a lot of words on her own without my prompting, and then her repeating. Our neighbors got a new kitten, and she said "Baby Kitty." Derek was going potty and she said "Pee pee." Daddy got home and she said "ya-ya". Sometimes we have heard her say "Dada", but more often it still comes out "ya-ya". She can point to her eye and say "eyes." We have a mapping appointment this week. It has been about 3 months ince the last mapping. We're hoping for even better results after this appointment. This week, Grandma and Grandpa were here. Grandma asked Derek to do omething, and he said "Noooo!" Then Taylor helped the cause by adding her "NNNNooooo!" My mom thought this was pretty funny. We have Skyped with them, but they hadn't seen Derek and Taylor since early January. They were impressed by her progress. On the blog design, I had to take off the side posting about Words Taylor Knows; it got too long months ago so I gave up on tracking that one. I am still tracking Words Taylor Says. I know that she does say more words than this, but I try to remember as many as possible. She is tarting to add more words daily. Posted by Melinda Morgan at 3/15/2010 2 comments: Monday, March 8, 2010 From the Parent’s Perspective - Teaching Materials, etc. Another month has gone by! How is that possible? Well, in the past month, I’ve been to Jacksonville, Florida; Birmingham, Alabama; Kansas City; and Oklahoma City (3 times.) I am feeling like a road warrior and the road is starting to win the battle. I travel for my job, usually once a month or so, but it has been more frequent in the past few months, averaging around twice a month. Those were the trips to Jacksonville and Birmingham. The Kansas City trip was for fun, to catch up with family and friends that we haven’t seen in a long while. And every Friday, we drive about 8 hours roundtrip to take Taylor to her weekly therapy appointment. I’m actually writing this from the airport in Memphis. Not much else to do in this airport – now at Atlanta’s airport, I could go to the Xpress Spa for a pedicure. Maybe another time… Taylor is now 21 months old, and in a few more days, it will be six months since her activation. While so much progress has been made, the worry and analysis endures. Are we doing the right thing(s)? How much therapy is enough? Should Mom keep working? What’s the right place/type of therapy? Does Taylor need to go to an AV pre-school (necessitating a family relocation?) Last weekend, when we spent the weekend with friends who have a daughter who is almost two and a half, I worried that Taylor’s Dad would be making constant comparisons of the girls and how Taylor was progressing. It’s kind of a double-edged sword because although we know how far Taylor has come in less than six months, we do want to compare her to other kids to see how she is doing – is she comprehending at an age-appropriate level? Is she speaking at an age-appropriate level? What would she be doing if she wasn’t deaf and could have heard from the time that she was born? We are always between the happiness that he is progressing well and the fear that our happiness with her progression could lead to complacency. How good is good enough? Is there a point of “good enough?” Enough work, enough reading, enough words. There are still the rare times that it flat out makes me mad that she has to go through all of this and couldn’t have just been born hearing like most kids. The 5 hour surgery when she was really still a baby. Learning to comprehend sound. All of the extra work to do omething that doesn’t come naturally to her. Our babysitter quit and last week was her final week. This week, we’ve had super-Grandma Cherie watching the kids and they have been having the best time. Next week, we have a new babysitter starting. This will be the third one since Taylor was born. I really hope she stays with us for a long time. It’s a tough transition for the kids and for the parents. Derek is going to start pre-school now that he’s 3. It will be 3 days a week for about 2.5 hours, a great opportunity for him, and allows for ome one-on-one time with Taylor. Working with her at home (i.e. books, language development games) has been a challenge. We really have to plit up and each take a kid. The simple books that we try to read with Taylor are not enough to keep Derek’s interest. Due to my travel for work and Dad’s work schedule, a lot of times in the evening, only one of us is there, so one-on-one time can be a challenge. They’re only 17 months apart so these challenges are typical in some ways of any family with 2 toddlers close together. There are a couple of learning tools that we have been using for both Derek and Taylor. The Your Baby Can Read set is great. There are videos, books, flashcards videos, sliding word/picture cards. They are nice for infants. We got the set when Taylor was 9 months old and she really enjoyed them at that time. At 20 months, they don’t hold Taylor’s interest. The books, flashcards, and sliding word/picture cards are all great. They allow for us to do “audition” first, saying the word as she sees it in written form, then sliding open to expose the picture. They are great! Our 3-year-old son also enjoys these cards and books. The pictures are very realistic, mostly photographs of actual objects/forms rather than cartoonish illustrations like some baby books. I can see them continuing to be useful until kindergarten or so because it will help them with sight words. After we found out Taylor was deaf, but before we had the CI surgery, I bought the Signing Time set of videos and books. The videos are really cute with good music. They show the written word as they verbalize it, and then show children making the signs for it. They usually show very cartoonish illustrations of the subject at hand. Overall, the videos are really geared toward a hearing child who is learning to sign for fun and to encourage earlier communication. I personally found them frustrating because from my deaf child’s perspective, I couldn’t see how she could possibly learn to associate the sign with the subject because the pictures were cartoonish and shown minimally as compared to howing the children doing the sign while they said it. I would only encourage these if your child can hear normally or with hearing aids or CI’s. As for the books/supplemental materials, I wasn’t happy with these either because the illustrations are cartoonish and more focused on showing the signs rather than the subject. We have loved the DVD collections of Baby Einsteins (for 18 months or younger) and the Little Einsteins (for about 15 months and up). They have been wonderful and really encourage active listening. Posted by Melinda Morgan at 3/08/2010 No comments: Labels: cochlear implants, signing time, your baby can read Newer Posts Older Posts Home Subscribe to: Posts (Atom) Taylor, Spring 2013 Subscribe To [arrow_dropdown.gif] Posts [subscribe-netvibes.png] [subscribe-yahoo.png] [icon_feed12.png] Atom [arrow_dropdown.gif] All Comments Search This Blog Loading... Followers About Me My Photo Melinda Morgan View my complete profile Blog Archive Ethereal template. Powered by Blogger. Extraordinary Ears - RSS Taylor and Lauren's Extraordinary Ears This is story of our daughters Taylor and Lauren, both with profound hearing loss, and the journey of getting and utilizing cochlear implants. Both have congenital deafness due to the Connexin 26 gene mutation. Friday, February 5, 2010 ORLANDO We just returned from a family vacation to Orlando. What fun! We had beautiful weather for the entire trip, several days above 80 degrees. Taylor and Derek enjoyed the trip, starting with two airplane rides. They were so excited to be on the airplane – Taylor even said “airplane” a few times. It helped that she had Derek to imitate. He loves planes, and it has rubbed off on her. In fact, when we landed in Orlando, after leaving our house at 4 a.m. and taking two plane rides, Derek wanted to know if we were going to get on another airplane. In Orlando when we landed, they were so fascinated with the planes and the baggage handlers that they stood at the window for a good while, even getting the baggage handlers to wave at them. There was a lot of time pent at the pool, which they loved. I think it’s good for the soul to get outside in the sunshine and warmth in January, when you are really getting tired of winter’s cold, dreary weather. We went to Sea World for two days, and Disney’s Magic Kingdom for one day. Here are a few pictures from those parks! Mommy and Taylor at It's a Small World ride Carousel SHAMU Taylor LOVED the MANATEES! Taylor and Derek with the Dolphins I’m sure that any of you with little ones know what it’s like to ride elevators with two little kids, both so excited and wanting to be the one privileged button-pusher. We were on the third floor at our resort, tried to say “elevator”; she got out the right number of syllables and you could tell that was what she was trying to say. Every time we take a little vacation, I’m reminded of why they are so needed. It reminds you that there’s a world out there besides the mundane work of daily life. While it’s winter now, we have sunshine and pring coming our way. For children, it provides chances for expansion of the mind, as well as an opportunity for family togetherness and bonding. This was our first trip since we found out that Taylor was deaf and began this CI journey, and it was much needed. For Taylor, I think she might have been a little worn out by the end of the trip. On the third evening in Orlando, we were seated by a waterfall at RainForest Cafe, enjoying the aquariums and views. Of course, this was after a very long day at Magic Kingdom. I was holding her and walking around the restaurant to give her better views of the aquariums when I noticed that she was missing an "ear". I retraced my teps and ended up back at the table -- no CI. We started looking under the table. A couple seated next to us noticed the commotion and panic, and kindly mentioned that they had seen Taylor throw something into the waterfall. WHAT?!?! Jon and I both had our arms in the waterfall, digging around everywhere. It was kind of bubbly so difficult to see. I asked the waiter to get the waterfall turned off. It took them a little bit, but finally, it went off and we were able to pluck the CI right out. We let it dry out and it worked fine the next day! Here's the waterfall! Posted by Melinda Morgan at 2/05/2010 2 comments: Labels: CI in water, cochlear implants, Disney, SeaWorld Sunday, January 10, 2010 Freeze Dance! [IMG_1936.JPG] It's getting harder and harder to write the blog, because Taylor is seeming more and more like a "normal" hearing kid... which makes me more happy than you can possibly imagine!! Her most recent new word is Papa!! We still haven't gotten a Dada out of her yet though, poor Daddy. She must be saving the best for last. She is regularly saying Mama, Bye, Hi, Meow, and several others. No "D" sounds at all yet. Taylor just passed the 19-month mark. In the past few weeks, she has gotten to be really good at putting the coil back on her head by herself. If she loses an "ear" all together, she'll walk right to us to get it fixed... that is, if she is in a good mood. If she's irritable and tired, sometimes she rips them off just to get our attention. She loves music, and has become quite the little dancer. Taylor is an excellent imitator. We watch "The Little Einsteins" quite a bit on our therapy trips to Oklahoma City, and I think she imitates June, the dancer. She just gets up on her tip-toes, prances around, and spins in circles. So cute! [IMG_1983.JPG] Over Christmas and New Year's, we also had our anniversary and Derek's 3rd birthday. Taylor got to go sledding for the first time. She was a good sport about it, considering how cold it was. [IMG_1984.JPG] Christmas gave us and our families the chance to load Taylor up with noisy toys, like a guitar, microphone, speaking/learning toys. She also got a play kitchen that she really loves. I am thankful for all of these new toys that allow us to role-play and add verbal opportunities into her normal playtime activities. [EMBED] video Posted by Melinda Morgan at 1/10/2010 2 comments: Friday, December 18, 2009 Loving the Nucleus 5 Processors Another week has gone by. We have pretty much gotten the Nucleus 5 processors figured out. The difference between the new and the old (Nucleus Freedom) has been amazing! Taylor has really started trying to ay words. This week alone, she has tried to say Waffle, Ball, Baby, Moo (as in a cow), and she is a PRO at saying Mama. :) Once we got the new processors on her, with the appropriate settings and volume, she has loved them. She tries to put them back on herself. She has made an immediate and drastic improvement in her attempts to babble and to speak actual words. The decorative covers are really cute too. We have the lavendar swirl ones and some pink camo covers. We talked to our insurance company again this week, and they said they will be covering the surgery. I'm still waiting to see the EOB for confirmation. Stay tuned for pictures and video. Posted by Melinda Morgan at 12/18/2009 4 comments: Tuesday, December 8, 2009 Happy Times - Taylor is 18 months! Taylor turned 18 months last Friday. It has been 6 months this week ince we found out that Taylor is deaf. At her therapy session last Friday, Taylor was tested to see how well she is progressing. It had been 12 weeks since her activation. In terms of word recognition and cognition, Taylor now has the word recognition of ....... (drumroll, please............) an average 18-month old!!!!! She has in 12 weeks caught up to that of an average child her age. WE ARE THRILLED! This isn't the case for her verbal skills -- she is babbling more like a baby, maybe 10-12 months. She says Mmmm, Mama, Hi, and other than that, he makes sounds like wa wa, Oh, etc. Still no consistent dada or baba. She really likes music and is a great little dancer as she hums along with the music. Yesterday, we received a couple of very interesting items in the mail. Nucleus 5 Processors!! Amazingly small, with a great iPod-like remote to control volumes and programming, love it. It upposedly came with Taylor's maps on it, but she didn't like them and kept taking them off. Next Thursday, we have a mapping appointment, so I will let the audiologist get them mapped and wait until then for Taylor to wear them. Copies of Letters between our insurance and Blue Cross/Blue Shield in which BC/BS is denying payment of her surgery because it "wasn't deemed medically necessary." This is ludicrous considering that they approved the bilateral CI surgery back in July. Any advice??? At the end of the day, when I look back at the past 6 months, I am so happy and thankful that Taylor is doing so well. If I have to pay $100k for her to have unlimited opportunity, then I guess I will, but not without one heck of a fight with BC/BS. Posted by Melinda Morgan at 12/08/2009 3 comments: Monday, November 30, 2009 Proof is in the Pointing Taylor is now pointing at words in her books if we ask her to. This is the best evidence ever! And particularly handy since she is only 17 months old and most kids wouldn't point out things at 17 months. So far, she has pointed to airplane, flower, fish, and bottle when asked. I'm sure she knows more words... It's a limited attention span that gets us. :) We are thrilled to have this evidence of her learning and progress. Taylor is also babbling a lot more these days. She will try to "sing" along with music. She really loves The Little Einsteins and inging with their characters. "Aaaahhhhhhhhh!" as they are trying to make the airplane fly higher and higher. If she hears anyone laugh, she looks to see where it is coming from and usually joins in with laughter of her own! I can tell that she LOVES being able to hear with us! We can't wait to get the Nucleus 5, the upgraded version of the sound processor. Thanks for your notes and comments. Posted by Melinda Morgan at 11/30/2009 2 comments: Thursday, November 12, 2009 Learning Language For Halloween, Taylor was a little leopard, and Derek was a Chicago Bears football player. They were both so cute. The weather was great! It was a good night. Taylor has really been progressing. I don't know where November has gone. We are already planning Thanksgiving, and this is my first post of the month. For the first month or so post-activation, Taylor made lots of meaningless sound. She was always a pretty noisy kid (so much for the tereotype that deaf kids are mute), and once she had the CI's, she was constantly making noise, especially if she was upset or bored. I would try to start singing or make some interesting sound to get her attention back to "listening." Starting about 2 weeks ago, or 6 -7 weeks post-activation, that noise-making really dropped off. She is really quiet most of the time, unless we take her Ears off... then she is back to chattering, but she doesn't realize it. She is still saying Mama, and MMMmmm (as in food is GOOD), and she will still say Mama even without her Ears on if she wants me. Overall, although the list of words that we think she knows continues to grow, I am feeling frustrated at how to teach her that she has own voice. She has "Mama" down; she does do some high-pitched squealing; if we're singing, she will try to hum along. We (mom and dad) would like to see more babbling or exploring her voice. Trying to put myself in her shoes, I can see that she is concentrating so hard on figuring out all of the sounds and the meaning of the words that we are saying. From that perspective, I am thrilled. She is trying to hard to absorb, absorb. She will sit through 10 books or more! (at 17 months) Her attention span is impressive (at least to me.) I'll close with a description of our last therapy appointment: We were playing with our AV therapist. The whole family came to the appointment - Mom, Dad, Derek and Taylor. We were taking turns playing with some toys, and got to a drum. It was Taylor's turn to play the drum, and she was banging away. The therapist said "Stop," and Taylor just stopped and held the drumsticks in the air. We were shocked! So, we decided to test it again. She was playing away, the therapist said "stop," and she stopped right away. Same thing, drumsticks in the air, he just froze. The third time we tried it, Dad said "stop," and again he stopped. We did it again just to make sure she really knew "Stop", and does she ever! I'm fairly sure that she has heard me say "stop" about 200 times in the two months that she's had Ears. After all, she has a two-year old brother. Posted by Melinda Morgan at 11/12/2009 1 comment: Monday, October 26, 2009 Dancing!! and other humorous moments... Taylor has started dancing. She likes her musical Halloween cards in particular. Derek & Taylor got two musicals cards for Halloween -- Alvin & The Chipmunks and Scooby Doo. Soo cute! I am trying so hard to get this on video. Standby for the video addition. One of the first things that we did in therapy was a "Shhhh, Wake up" game. It's a good way to know if she is hearing the "Shhh", plus it's just plain old fun. She tries to play it by herself now... and if we just whisper "SShhh", she'll turn her head to the side and close her eyes like she fell asleep. She also has started high-pitched squealing and imitation of lots of ranges of sounds. If I sing, she'll try to go along with me... not the words so much, more the tune. We play an airplane game where we go "ahhhhh" and move our hand up and down like an airplane. Jon just made the "ahh" sound, and she started moving her hand like the airplane. We were in the family with room with toys and books strewn across the carpet. Taylor was sitting on my lap. I asked her to go get me a book to read, and she got down, picked up a book, and came back to me. :) This week at our therapy appointment, we aid "Bababa" into a little bucket, and got her to imitate us. Next, we tried "Shhh" and she again imitated us and tried to say "Shhh." We have had some success getting her to do this at home. It's odd... we are trying to teach her the power of her own voice. There are lots of fun things happening... too many to write, but we are seeing progress! Posted by Melinda Morgan at 10/26/2009 3 comments: Labels: cochlear implants, toddler Wednesday, October 14, 2009 Hoorah for Headbands A frequent conversation among parents of little ones with cochlear implants -- How are you keeping them on your little roly-poly, wrestling, climbing toddler? I originally started out with some Goodie elastic women's headbands. They were working great, but you needed two, one to hold each CI. And they were elastic, so sometimes Taylor would pull on them and end up napping herself in the face, like a rubberband. Not good. We go to a parent's group of deaf/hard of hearing kids in Wichita. There, I met another mom of a little girl with bilateral CI's. Her grandma had sewn her a headband with loops to hold the CI processor on. It works so well and looks great! The super sewing grandma hooked me up and offered to make some for Taylor. So far, we have light pink and dark pink, with others on the way. Mom, Dad, and the babysitters are thrilled! These pictures were taken while I was making some pies and whipped cream (on Taylor's mouth) last weekend. (If you want a headband for your child, I can give you her contact information.) I love it so much, even if I had a boy, he'd be wearing it as a sweatband... maybe with a fake Nike swoosh or some kind of porty decoration. It makes life with CI's and a 1-year old that much easier. Posted by Melinda Morgan at 10/14/2009 34 comments: Saturday, October 10, 2009 Taylor Talks!! Taylor had her cochlear implants activated 4 weeks ago... On Wednesday, we thought we heard her say a word but weren't for sure. On Thursday, the same word came out - Mama!!! Ha! A victory for Moms Everywhere! We all know that babies usually say Dada first. Not Taylor. She had a wonderful, amazing gift for her Mommy. Daddy was trying to take her away from me and she said "Mama"! I will remember that moment for the rest of my life. The fact that my profoundly deaf daughter is learning to talk is a blessing so magnificent that I can barely comprehend it, certainly more than I dared to hope... all that we have done since the day we found out that he was deaf, June 8, was working toward this moment. And although we believed in the technology of the cochlear implant and the therapy that we have been working on, and even having met other children that have only had the implants for a few months or years, still I was prepared for nothing and afraid to hope for all... In the booth testing prior to the mapping, Taylor easily heard a sound at 20 dB and a frequency of 1000 Hz. Above you can see that the normal range of hearing is 20 dB or below. Taylor is already hearing at normal levels!! This week we went back for another mapping of the devices. "Mapping" is a programming process to fine-tune the CI for Taylor. She was a very patient little 16-month old, sitting for over an hour. She was playing with some toys, and they were trying to condition her to look at the puppy dogs or bears when she heard a sound. Instead, she just started repeating the sound back when she heard it. "Beep, Beep. Beep, beep." 22 electrodes on each side... The audiologist and therapist were laughing at Taylor's creativeness. It also made Jon and I wonder how often she was imitating us when we thought she was just making "noise." Taylor is showing us her growth in receptive language. Today I asked her to pick up the diaper, and she picked it up. She also knows the word "shoes." (That's my girl!) We have been working with her on family pictures and names. She knows Daddy, Derek (brother), and Katie (our babysitter.) -- probably many others but this is just a start. Posted by Melinda Morgan at 10/10/2009 2 comments: Labels: Cochlear implant activation, talking Thursday, October 1, 2009 So Many Exciting Changes This has been an amazing week. I always try to be extremely cautious about what I claim that Taylor does when writing the blog. There was uch a long time period of her life that I thought she could hear, so I don't always trust myself to be an unbiased critic. BUT..... According to Grandma M, Taylor recognized my voice on the phone! Her Dad had her in Ok City for her therapy appointment, and she was crying her little eyes out. I called his cell phone and he held it up to her ear so I could talk to her. She stopped crying and started smiling!! Ahhh. According to both of our wonderful nannies, Taylor has started doing ome great new things this week. She will move her mouth like she is talking, but doesn't make any sound. (I really want to get this on video.) She rubbed her tummy and said "MMmmm," imitating Derek and the babysitter, during snack time. She also tried to imitiate some other word-like sounds, even once sounding like she said "Uh-huh" for a ucker. Another time, Katie said "Let's go upstairs" and Taylor started heading for the stairs. According to her Dad, he is noticing big changes this week too. They were playing and wrestling, and she started imitating sounds he was making. :) These are all very little, but very BIG, things. It is so important that she start to understand the meaning of words, and recognize that he has her own little voice in there. Taylor seems to think all bodily functions are hilarious right now. Burps will turn her head at any moment. She even did a fake burp tonight. Coughing - she will imitate us or even purposefully cough to try to get us to cough back. Spitting (or sound of spitting) Gargling, thanks to Derek... her brother, sidekick and partner in crime. It makes sense that Taylor will go through a learning process for sound imilar to a newborn baby. At 3 weeks post-activation, I would say she is about like a 6-8 month old baby. She is going through the same learning progression, at a more rapid pace. I continue to be amazed by Taylor's ability to adapt to the new world of sound, and I am so thankful that cochlear implants exist. Posted by Melinda Morgan at 10/01/2009 1 comment: Wednesday, September 23, 2009 Taylor's Top Ten List and TODDLERS! Well, it is impossible to write this without wanting to share a couple of recent happenings with Derek, Taylor's 2 1/2 year old brother. The other night, after Derek's bath, I was sitting on the floor putting his lotion on, with the pajamas ready to go. He was standing up, so I asked him to go grab a diaper for me... Derek's response, "Why, Mommy? Are your arms broken?" Hmmm, I'm picturing a big smart aleck during the teen years. Another recent adventure - We have to drive 3 1/2 hours to Oklahoma City for Taylor's therapy appointments. Derek is potty-training and Taylor still wears diapers. Two hours into the drive, Derek has to go potty. I swing the car into the first place I see - Sonic. With a Bathroom. Whew! I have to take them both in the bathroom, and change Taylor's diaper as well, but of course there is no changing table. And did I mention that Taylor is fascinated with the toilet right now? Well, Derek is on the toilet going potty, and I had Taylor standing up as I tried to change her diaper... I look up to see her putting toilet paper in the toilet, her hand going right into the stream of potty... then I try to pick her up and away, only to have her put her arm around me getting some of the potty on my face. Oh yeah, these are the moments that Motherhood is made of. And finally, as Taylor's Mom, I'm taking the liberty of mind-reading and creating a Top Ten List for her, since he can't quite tell us yet. Here goes: Top Ten Things that Taylor thinks are Really COOL since Activation: 10. Water running from faucet 9. Wind chimes (we always have wind in Kansas!) 8. Wind, especially blowing through the trees (yes, there are some trees in Kansas.) 7. Lawnmowers 6. Taylor pretending to Sleep & Wake Up game, her own twist on an AV therapy game 5. Taylor slamming cabinet doors 4. Taylor throwing her cup to the floor 3. Our cat meowing 2. When anyone Sings Songs! 1. Getting to hear her family laugh - she always starts laughing too! Posted by Melinda Morgan at 9/23/2009 3 comments: Sunday, September 20, 2009 It's the Little Things We had another mapping session on 9/16 where she got turned up a little with 2 new programs. She did great in the mapping session, definitely howing intelligence and tolerance to stimulation. She has been wearing her CIs without much fuss, besides in the morning when first putting them on. I liken it to the alarm clock in the morning. It always seems lowly turn her up as the day goes on. Taylor has now been "turned on" to the world for 11 days. She has shown us some little reactions to ound that normally we would take for granted. But for me, these little reactions have meant everything. When Derek was born, he failed his newborn hearing test. Being the paranoid father, I would occasionally make a squeaking noise to check his reaction. He would always squint his eyes or blink to the sound. After Taylor failed her newborn hearing test, I would do the same thing but never got a reaction. This past week, I have made that noise a few times. Each time she blinks in response to the noise. She also does it when a door shuts or she drops her sippy cup on the floor (which she now thinks is hilarious and does it all the time). Seeing her blink in response to noise may not seem like a lot, but it's all I wanted her to do when she was younger and never did. We now are getting an opportunity to watch her learn noises like a newborn. It is an incredible feeling. Posted by Melinda Morgan at 9/20/2009 2 comments: Sunday, September 13, 2009 Another Dimension!! Taylor had her cochlear implants activated on September 9 and 10, 2009. Age 15 months. Day 1: Impossible for all of us to imagine, but Taylor never knew sound existed until Wednesday, September 9, 2009. For this little 15-month old, who thought she had the world pretty well figured out, it was a mind-blowing experience. The best word that I can think of to describe her reaction was terrified, at first anyway... The video is only 2 minutes long but will give you an idea of what it was like. She cried a lot that first afternoon, but after about an hour or so, she calmed down and started playing as usual. Day 2: We were warned that the most difficult part of transitioning to wearing a CI is putting it on each morning, to go from complete silence to the loud world of sound. I put the CI on her when she first woke up on Thursday morning, and she cried and fussed for about 30 minutes before settling into wearing it. She wasn't trying to take it off; I think she was freaked out by those "sounds" being there again... like maybe the day before was some weird dream. I have been buying random headbands, hats and even a shirt (http://www.hearingpocket.com/) that I thought we might be able to use for keeping the CI's on her head. I bought a set of four women's Goody elastic headbands at my local grocery store, and they seem to be working well. The fact that she is leaving the CI's and headbands on really says it all. We can't even get her to hold still for a diaper change. Changing her clothes is like wrestling a greased pig. But with all that, she is keeping the headband on. All day long. It really only came off when she was playing or wrestling with Derek. We could see the exhaustion on her face as the day wore on. By 11 a.m., he was napping and slept about 90 minutes. We had the activation for the right side on Thursday afternoon. During this activation, Taylor got a little upset when the device was being tested, but other than that, she was great. We went home with two little CI's on her head. :) She slept almost 2 hours in the car driving back to Kansas. Learning to listen is a lot of work. Day 3 - First Day with Two Ears Again this morning Taylor went through a short time of being upset when we first got the CI's turned on. She left them alone, but wanted to be held and comforted by me for a while. She started showing signs of a lot of excitement today. The look on her face was like "I am in a whole new world and I like it!" She had a good nap, but was still getting mentally exhausted by early evening. Her brain is working so hard to figure it all out -- wind, crickets, lawnmowers, Derek saying "mine" and "No, Taylor", etc. He says "No, Taylor" so often that I am afraid she will think that is her name. Days 4 and 5 Taylor is having fun with this. She looks up right away when I say her name or just speak in general. She has figured out that our cat meows and thinks it is hilarious. She knows that our dog's bark is really loud and thinks this too is so funny. I have enjoyed playing old games with her, now that she can appreciate the sound portion as well. We played Peek-a-boo, and she made me laugh by covering her face/eyes when I did and then uncovering them when I said Peek-a-boo. She was waiting to hear me, before she would move her hands. So cool. Our family has learned several signs in the past few months, and now I am using those in conjunction with speaking the world in the hopes that it will help her recognize words. It is going to be fun to see how she picks it all up. We are so thankful that cochlear implants exist. BLING! We have been having fun decorating her "Ears." Today she had pink and purple headbands, with pink "ears". The right one was accesorized with a purple cover, to coordinate (serving a dual-purpose as we have to keep right and left sides separate.) Posted by Melinda Morgan at 9/13/2009 6 comments: Labels: Cochlear implant activation Tuesday, September 8, 2009 Just As You Are... Does anyone remember in the movie "Bridget Jones' Diary" when Mark Darcy says to Bridget -- "I like you just as you are"? And all of Bridget's friends couldn't believe he'd said that, thinking it was so amazing. How often do any of feel like we are loved just as we are? I just felt like I needed to go on the record that Taylor is perfect as he is, regardless of what happens with the CI activation tomorrow and the years to come. She is one of the most joyful, loving, determined and outgoing children that I have ever known. There is much controversy about getting CI implants in deaf children before they have the ability to make the choice for themselves. I hope that by doing this, we are giving her the choice to hear or be deaf later in life. Otherwise, Taylor's decisions to talk, listen, and communicate verbally with all of us would never be an option for her, so profound is her loss. So, here's to opening doors.... Enjoy the video. She was tackling her cousin, 5 days after the CI surgery, with a little help from Derek. [EMBED] video [EMBED] video Posted by Melinda Morgan at 9/08/2009 4 comments: Tuesday, September 1, 2009 We want Cochlear Implants, stat! There is such a range of emotions that parents experience when finding out that their child is deaf. I won't expound in great detail on it, but I will say that I have relived every day and every memory that I had of Taylor back to her birth, how she reacted to certain situations and what I would have done differently had I known that she was deaf. But I am a person of action, and revisiting the past isn't going to get us anywhere. What to do? We had done research before the diagnosis, and knew cochlear implants would be our preference for Taylor if she was profoundly deaf. Let me give you an idea of what the summer was like: June 8 - ABR, diagnosis Profoundly Deaf; first appointment with otolaryngologist/CI surgeon June 10 - CT scan to rule out tumors and ensure the anatomy was normal and would allow CI June 12 - Second appointment with otolaryngologist; Speech therapist appointment June 15 - Pediatric cardiologist appointment to rule out any syndromic deafness with associated heart conditions. (None found) June 19 - Appointment with Audiologist. Taylor got her hearing aids. June 26 - Speech therapist appointment. No benefit shown with the aids. July 21 - First appointment with new otolaryngologist at Hough Ear Institute in OkC. Genetic testing sample taken. July 27 - Audiologist appointment. No benefit with aids. July 27 - Wichita Otolaryngologist appointment. Their Goal for her CI surgery, on one side - November. Taylor would be 17 months old. Not acceptable to us. July 28 - Genetic testing results, 2 recessive copies of Connexin 26 gene mutation. August 3 - First meeting at Hearts for Hearing, our audioverbal therapy center in OkC. August 10 - BILATERAL COCHLEAR IMPLANT surgery at the Hough Ear Institute!! Age 14 mo. This glosses over so many important decisions that we had to make along the way: To sign or not to sign (We are!) ASL or SEE or Baby Sign? We elected SEE, Sign Exact English. Nucleus Freedom or Advanced Bionics - elected Cochlear's Nucleus Freedom. Implant on one side or both? BOTH! Simultaneous or Bilateral surgery? She had both implants done at the ame time. What colors of implants? What types of processors? What causes deafness? How do we get genetic testing? Do we drive 7 hours roundtrip for audioverbal therapy for the next few years? And then there are all of the long-term decisions that we'll have to make -- will we h ave to move to a larger city with better access to schools and therapy? With a 25% chance of having another deaf child, should we have more children? And how do we get involved to make the process easier for the parents that come after us? CI Activation Date: September 9, 2009. Location: Hearts for Hearing, Oklahoma City Posted by Melinda Morgan at 9/01/2009 9 comments: Labels: advanced bionics, cochlear implants, connexin 26, genetic causes of deafness, nucleus freedom Monday, June 8, 2009 Our daughter is deaf?!?! Taylor, Born June 4, 2008. 6 pounds, 11 oz. She was welcomed into this world by an older brother, Derek, age 17 months. Derek didn't pass his newborn hearing screening when he was born. At the follow-up exam when he was one-month old, he passed... whew, no more worries for the new parents. By the time Taylor was born, Derek was talking away. When Taylor didn't pass her newborn hearing screening, we weren't concerned. After all, the same thing had happened with Derek, 17 months earlier. No family history of deafness. Taylor proceeded to amaze us with how fast she progressed; she was very attentive early on, smiling early, laughing whole-heartedly at her brother by 3 months old... She has the most magical laugh. I hope it doesn't change once she can "hear" with the cochlear implants. Taylor was ahead of the milestones on physical development, across the board. She started walking at just over 10 months. She was also so very social and in tune with everyone in her environment. As her parents, we started to get concerned at around 8 months when we noticed that her babbling wasn't changing. She made raspberries noises, and would cough or smack her lips in imitation of us, but there weren't any word-like pronunciations such as mama, dada, baba, etc. We made an appointment to get her hearing re-tested by an audiologist at 11 months. She again did not pass the OAE exam. The audiologist suggested that we wait another two months and see if we could tell if she understood any words that we said, regardless of what Taylor was speaking to us. She just didn't think that Taylor acted like a deaf child. (More on that later...) At that point, my husband and I were very seriously concerned, and we realized that whether she had a hearing problem or not wasn't something that we were going to wait another two months on... 13 months! No way. We made an appointment with an ENT to analyze Taylor further. Her ears appeared to be in excellent condition. He again said the same thing as the audiologist had -- she didn't act like a deaf child. Hmmm. This is a child with no history of ear infections or fevers; she has never even had a cold. He referred us to a center in Wichita for further testing of her hearing. We called to immediately schedule an appointment, but it was almost a month for them to get us in. June 8, 2009 was the day. We had our ABR test. In babies, the most effective way to test their hearing is to conduct an Auditory Brainstem Response test. Basically, they put the child to sleep with anesthesia, emit sounds to the ears and test for brainwaves. Prior to the test, two audiologists observed Taylor and how she interacted with them, toys, stuffed animals, and cell phones. Again, one of the audiolgists commented to us that it appeared Taylor had heard something he said. Well, the results of the test were simple: No brain waves hown at any point, at any decibel level. She is profoundly deaf. Posted by Melinda Morgan at 6/08/2009 2 comments: Labels: cochlear implants, congenital deafness, connexin 26 Newer Posts Home Subscribe to: Posts (Atom) Taylor, Spring 2013 Subscribe To [arrow_dropdown.gif] Posts [subscribe-netvibes.png] [subscribe-yahoo.png] [icon_feed12.png] Atom [arrow_dropdown.gif] All Comments Search This Blog Loading... Followers About Me My Photo Melinda Morgan View my complete profile Blog Archive Ethereal template. Powered by Blogger.