Ushers ... a New Journey

So it's been years since I've posted. Too many years. Aiden, my blue eyed baby above, was doing great, everything was right on track. Until the day. Until the day we noticed he was struggling seeing at night. Until the day that OT appointment after OT appointment didn't seem to make a difference. At this point he was in fourth grade, the same grade I taught, the same school I taught in. I watched him closely at recess and saw he wasn't keeping up. I'd been asking all my colleagues for the past three years how he's been. "He does his own thing." "He keeps up." is what I heard so I let it go. Yet in my momma heart, I knew there was something just not right. It took TWO Halloweens for me to realize he was not keeping up and had a difficulty with it. After the second Halloween, and a friend's Halloween birthday party, where my son chose to stay in the light, versus play tag in the dark, that I chose to pursue a neurologist appt. I made an appt with his primary care physician, who made us see his cochlear implant specialist first. From there we had to see a pediatric ophthalmologist. It was here my world came crashing down once again. I wasn't even prepared, nor did I ever think this possibility to be true. He mentioned the word Ushers and that we'd have to get further testing. He saw something I never thought possible for my boy. I knew the word, but at the time that wasn't our world. No way could that be our world. As far as I've always  been told, Aiden has EVA (Enlarged Vestibular Aqueducts) which took his hearing and effected his balance. Ushers?!?! NO!!!

Six months, a drive across the midwest to see one of the best doctors who deals with Ushers, confirmed, my baby has Ushers Syndrome. This is a rare syndrome that affects a very small amount of people out of 100k, and my boy has it. After 10 years of thinking one thing, my son has a true hard diagnosis that'd I'd never imagine.

Tomorrow, Aiden will start learning how to use a white cane. Being the parent I am, I don't know all the answers I probably should, but am just going with what I know to do best next. Yet, I am the parent who needs to know all the answers, yet am still trying to navigate through this new journey, yet still, not knowing if I'm ready for said answers. It still doesn't all make sense to me. I'm so used to being in the know about everything hearing loss, so it makes me feel dumb when it comes to not knowing how to deal with this new journey of my son going blind. It is not fair.

So what's next. I'm trying to find a personal trainer for Aiden. Ushers doesn't only take hearing and sight, it takes their balance. Aiden has Ushers 1B, which is a whole different post. There's so many different posts, but for now, I have to focus on my now almost 12 year old, and how tomorrow he starts his first lesson with the cane. I'm having a much harder time than he is. Again, I just don't get it.

Once again, my son will teach me much more than I could ever teach him. Y'all, this kid is amazeballs.

just had to post

I'm in the middle of writing a long overdue (as usual) update on Aiden, but just had to come share a special moment shared by him and me this morning.

Early this morning, as everyone else slept, Aiden and I sat on the couch snuggling, me trying to search for Christmas ideas on the internet, him trying to get me to play Candy Crush on facebook. I don't even know what started the conversation, but we started talking about being deaf, hearing aids, and cochlear implants. He understands he's deaf, he knows that not everyone needs CIs to hear, and honestly, he never says much about it. He loves his technology and at times, even prefers to be without.

So as we talked, we watched videos. Videos on his hearing journey - from the time he had hearing aids (he thought it was hilarious that he was in the audiology booth as a baby!) to his activations, to his one year hearing video. It was after watching this one year hearing video that he snuggled up closer and said,

"I want to make a video. I'll say how I hear with cochlear implants and why I love them. and about (being) deaf."

{TEARS}.

This March will be his FIVE year hearing birthday.

Celebration indeed.

and what a perfect project to work on together.

In the meantime, a little flashback to his first year hearing video - From Silence to Sound.

Good Articles to Share with Educators

Just a couple hearing loss articles I came across that I thought would be beneficial to give to schools, teachers, day care providers, etc. to advocate for our kiddos.

I came across this one and then realized it is written by Leah over at Say What! I absolutely love her writing! So informative, so detailed, and I think this one is especially great for those people new in your child's life who need that basic understanding of what hearing loss looks like and sounds like.

http://leahlefler.hubpages.com/hub/The-Best-Hearing-Loss-Simulations-Understanding-Audiograms-and-the-Impact-of-the-Speech-Banana

This second one I stumbled upon from a hearing loss group I'm a part of on Facebook. I've never heard of this blog, but I'm going to search through it as I always love reading about hearing loss from a deaf adult's perspective to give me a better insight into Aiden's world. In this article, he writes about concentration fatigue. With Aiden starting full day kindergarten this fall, it's that something that's been weighing on my mind as I know he's just going to be whooped by the time he gets home. I thought this is a great article to share with educators as well.

http://limpingchicken.com/2013/06/28/ian-noon-concentration-fatigue/

Introducing the Nucleus 6

This is so exciting! It's not available in the US yet, but just the fact that Cochlear has had two upgrades in the short four years that Aiden's been hearing is just amazing to me! Now let's just hope that our insurance agrees!

http://www.cochlear.com/wps/wcm/connect/intl/home/discover/cochlear-implants/the-nucleus-6-system-/the-nucleus-6-system--

http://online.wsj.com/article/PR-CO-20130619-908918.html?mod=googlenews_wsj

Never too late ...

to start this blog back up (and catch up on everyone else's!), even if it's been over six months since my last post.

So I've vowed since it is summertime, to sit and have journaling time for my kids, and for me.

Time to get back into our journey.

and since the last time I posted (in November 2012), we have

• packed up and moved to Texas (it feels SOOOO wonderful to be back home)
• spent some good time in Wisconsin before heading south
• acclimated to new schools
• had IEP madness (so glad that's over!)
• said good-bye to an AMAZING AVT program in Ohio and reunited with our very first AMAZING AVT and audiologist back in Texas
• been catching up with friends GALORE!
• sang Happy 5th Birthday to Aiden
• signed Aiden up for KINDERGARTEN! (deep breath).
• had many swimming/bbq days with our friends
• went fishing, had bbqs, and more catching up with friends
• been submitting applications to reenter the classroom (I can't believe it's been FIVE years!)
• been hanging with our Ohio cousins who came for a week long visit
• been HAVING FUN.

Needless to say, I've been non.stop.busy.

But it's time to stop, and catch up.  I have so much to write about.

Aiden's journey continues. At his own pace, with his own special needs. We're still climbing that mountain, with obstacles along the way, but we're getting there. We're on the right track and I feel good about where we're at.

going {home}

We're packing it up

and

 heading home.

Well, not truly HOME-home, because neither my husband nor I grew up there,

BUT, Texas is where:

I moved to in 8th grade ... and stayed

 (my dad was military, so I was used to moving EVERY.three.YEARS).

Where I fell in love back in 1993 with my amazing husband,

had our first born,

and then our second,

and then eight years after our second decided, "Hey! let's have a third".

Where we owned our first and second home,

made many friends that became "our family",

started my first (and second, and third) careers.

Where my brother recently moved back to (even though he'll be FIVE hours away)

 and my other brother is moving to this Spring.

(Now we just need to pack up mom and get her there too.)

so yes, 

we are going HOME.

Back to the same city.

Back to the same schools.

Back to friends and "family" we've known for

all the years we've been married,
 celebrated many holidays with,
and who watched our kids grow up.

Back to an area we know and love.

Back to the CI team who diagnosed Aiden and his first

AH.MAZING auditory verbal therapist.

(you know, the one who doubled as my own personal counselor for the first 8 months of A's life)

Back to Kat and Thomas and Sid.

(all I can say is wine+a great friendship between us AND our kids+sunshine and patios and pools=pure bliss)

All my kids are excited.

especially aiden who truly has no clue,

yet tells me nearly everyday,

"Mom stop {insert whatever it is I'm doing}. We have to pack for Texas!"

oh and Ryan.

Beyond excited to go back to the friends he's known since he was SIX.

and Kailyn.

well, she's a little more apprehensive. She left in 2nd grade, now she's in 6th

(enough said).

she's been reconnecting with all her friends there through texts though; she's excited too.

We're all excited.

As another chapter comes to an end,

another book begins to open.

Life is a journey.

Enjoy the ride.

and the preschool teacher says ...

(posted this on Facebook, but trying to catch up on his blog and this is definitely "baby book" material)

first - one of my favorite "waiting for the bus" pictures

and here is a little snippet from Aiden's teacher at my recent parent-teacher conference.

(remember, Aiden is in a mainstream (nontypical) preschool class with 13 kids, all hearing with 8 typical peers)

"He reads the board out loud before I have a chance to,

he reminds me when I miss something in our daily circle time routine,

we have to ask him to give the other kids a chance to answer the questions,

and he's one of the most vocal in the class."--Mrs. M.

{simply.AMAZING}