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. 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