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 suggestions 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 some strategies below that help Christian to better understand conversations and classroom lessons. We are looking forward to a successful 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.

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 schedule 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.

28 Days and Counting

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 shares, 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.

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.

This is what I call an Up North Sky.

Cherry Festival kids!

You should've seen her waiving the American Flag....just a little piece of American Pie! 

Fishtown. So excited to share it with my 

Love Leland and Love sharing it with Chuck and the kids.

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!

Bustling BelleAire.

Must-Stop for our overnight in town. Love their beer!

This is our vacation look.

So much fun at Short's!

This is what a full day at the lake does to you!

Mom and Dad at Towne Club. Something tells me when they move-up to Elk full-time they will be visiting  alot!

Beautiful Elk Lake at Sunset.

A full day in the water with Uncle Nick! So much fun!

My lazy little beanie.

We're a Spartan family. SPARTY ON PEOPLE!

A six-pack of Short's and sunset on a log. Doesn't get any better than this!

Found on the first night!

Just stunning.

My Lake Babies!

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".

Out to lunch!

Lake Girl

Regulars.

More Short's....

Floating down the river

A whole lot of lazy!

I have a thing for smoked fish. The best.

Lego Carnival in TC!

Cherry Festival Parade! Nick Lidstrom was the Grand Marshall! Go Wings!

Miss Elk Rapids! 

Christian loved the MONSTER TRUCK!

Visiting with Papa Jim!

My Nana is so chic! Look at her!

Coney's with Uncle Nick. 

The girls.

One last good night story with Papa.

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 schedule 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.

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 surpassing 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 started 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 started 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 stood 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 see the transformation in the both of us. We're confident. We're secure. And we're ready for new adventures.

Last Day of School 5.5 years old

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!

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.

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.

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 something that is particularly interesting, he is often excited to share 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!

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 school we are going to be there as much as we can!

My Bay Boy. Sitting in the shade, listening to the waves, and loving EVERY MINUTE OF IT!

Water Ice at Sunset. Our new family tradition!

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 :) 

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.

Boobie Trap

"Mom, It's a Boobie Trap"

Someone has learned a thing or 2 from Uncle Nick.

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 school 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 stressful 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.

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 strategies 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 services (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 support 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.

TODAY

Today I'm walking into a conference room at our public elementary school 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.