Hello, I’m Amy.
When our newborn did not pass his hearing screening, they said it wasn’t uncommon. But we knew our Axel was special. We discovered several conditions during my 20 week ultrasound. From that, we knew he was going to have many difficult battles to contend with. He has Dandy-Walker brain malformation, shunted hydrocephalus, global developmental delay, hypotonia, imperforate anus, among many other things…
We were paying close attention and it was difficult to tell if Axel was hearing anything, at all.
After a month, he was discharged from the NICU and Axel did not pass the second hearing screening.
Thus we were referred to a pediatric audiologist.
Axel was diagnosed with profound Sensorineural Hearing Loss soon after.
We spent the next year trying out hearing aids, driving a few hours each week, for tests, molds and various appointments.
We were praying hard that he would be a candidate for Cochlear Implants.
[We were mistreated by those we trusted and found many pieces of misinformation in recent months. We are seeking another opinion, but they are uncooperative in helping us facilitate it.]
We began working on sign language when he was about six months old. Many of Axel’s conditions make his life more challenging.
FINALLY the day came for Axel’s sedated MRI. They would be able to answer many questions.
On pins and needles we waited. Finally, the doctor came to speak with us.
It became a blur as soon as the words left his mouth.
“Axel has very narrow ear canals, The nerves are barely visible.”
Axel has something the doctor called Neural Adaptation.
He said they were able to get a single repeat from Axel’s brain and that the reaction could not be duplicated.
Axel Was Not A Candidate For Cochlear Implants…..
I grieved over those words like I have never known a single hardship.
Sometimes, I still do.
Things I have taken for granted my whole life, can not apply to my son. I can’t sing him a song or ask if he heard this or that. I worry about how we will play at the beach, when he is able to walk, or what will happen if there is ever a time that I can’t see him and he won’t hear my calls. So many fears and curiosities circle in my head, some I will never know, because I am not deaf.
I have spoken with countless ENT’s, audiologists, and other professionals and none of them has ever heard the term “Neural Adaptation”.
That continues to blow me away.
There was only one answer to the impossible question we were faced with.
Regardless of those test results, Axel needed communication.
The only option for him was American Sign Language (ASL).
I have never known anyone hard of hearing or deaf.
No one in our whole family has, really.
I was really worried that I wouldn’t be able to communicate with my son. That scared me into action.
I only speak English and learning a language is hard! My attempts in school were not great.
I quickly found a 10 week ASL class, close to my home.
That first class had me excited, nervous, scared, and overwhelmed!
I took a 2nd class- this time instead of being alone, we had a group of eight- including both grandmas, grandpa, and of course, daddy and big brothers! It was the best feeling, coming together so Axel can prosper!
I worked on silly songs (ABC -relentlessly, Wheels on the Bus, Happy and You Know it, etc.). I began to feel more capable and began to incorporate signs more easily into our day.
Today, Axel is almost three years old. He walks with support and is working on learning his wheelchair, walker, sitting and a whole lot of communication! His hypotonia makes his movements uncoordinated. He has a lot of work to do to build up core strength- which is harder for kids with hypotonia.
Axel began to use the “all done” sign at 33 months old and he LOVES it! – proving that he can learn to do sign!
To date, he knows the meaning of about 30 signs!
It took him extra time but in the last year, he has been making incredible connections!
Every single time I do a sign and he initiates the meaning, it spurs me on even more so!
I never saw this journey coming.
It took me a little while to get comfortable in my new unexpected role (and I still cannot have an intelligent conversation in ASL) but for Axel, I think I am getting there nicely.
I have a website focused on awareness, awareness embroidery, resources and Axel’s progress. Https://aWearingHope.com
One of the many lessons I’ve learned is the importance of awareness, so no one feels alone.
We are not alone.
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