When your child is first diagnosed as Hard of Hearing or Deaf. There are a lot of people to meet, places to go and information to overload on. Whatever you do, do NOT Google. Not everything on the Internet is true, and honestly, you end up a nervous wreck because the only information you initially start out with is your kid can’t hear certain things. It can be overwhelming to say the least.
We established a relationship with C’s audiologist pretty quickly. She mentioned that hearing clinic was something we may want to participate in down the road. I blindly said “okay”. I mean, what else do you say when you are simply treading water? That was back in May.
About two weeks ago, I got a call from (I don’t even know from who I get so many calls these days) and they wanted to schedule C, my husband and me for the August 7th Hearing Clinic. It wasn’t a great day, I asked when the next one would be… October. Got it. The rest of the world got rescheduled and I blocked our day for “Hearing Clinic”.
Of course, A still had to skate, E had ABA and I still had banking to deal with for a non profit I volunteer with.
I had texted my Hands and Voices parent mentor and asked if she had insight as far as what we were walking into. Nope. She’d never been and couldn’t go with me because of other obligations. “That’s fine, I’ll write a blog post and you can refer people to that from now on.” – Side note: When I first met my mentor she taught me the sign for “volunteer” because I asked her how I could help. I really can’t help myself. – So… I got dolled up (because that’s what I do when I’m anxious) and put on my favorite flannel shirt so that I would be comfy and off we went. (I think it is interesting what each person finds to help them feel strong.)
Hearing Clinic time!
We got there a few minutes late thanks to rain and traffic, but pretty quickly we were brought back for a health check for C. Temperature, height and weight were taken and away we went to yet another room. A nurse came in and took down a bit of preliminary information… Explaining how she was diagnosed becomes rote after a while.
When she left the first round of visitors joined us.
We had an ENT (an Ears, Nose and Throat specialist), a Genetic Counselor and a NP come in and introduce themselves. The ENT started by explaining he would ask a bunch of questions about her birth, our family background and any additional factors that may come up prior to examining her ears. Again with the how C was diagnosed. Then came the questions.
- Do we have a family history of hearing loss?
- Do we have any autoimmune diseases in the family?
- Do we have any kidney issues in the family?
- Is there any possible way we are related? (This was my favorite and the one that made the ENT the most uncomfortable. lol) The answer was no, just for clarity’s sake.
After that, while the ENT examined C’s ears the Genetic Counselor went ahead and asked us where out families were from. That poor lady, on my side, it is a really long explanation. Thanks genealogy! She asked about things like Cystic Fibrosis and other genetic disorders. She also asked if it was possible for either of us to be Jewish. Seeing as how some of my European ancestors came from the Iberian peninsula… Sure there is a pretty good chance of that. C’s ears were in good shape and the ENT and Genetic Counselor suggested that we have C genetically tested based on our answers to their questions. This page gives a tiny bit of info on the tests available.
The way it was explained to us is that there are about 400 genetic reasons for a child to be born Deaf or Hard of Hearing. Of that number, 152 reasons can be distinguished by test. It seemed like a no brainer as some of the possibilities could cause C other issues later on down the road. At this point, Hubs had to leave E and I alone with C and rush back to the rink to pick up A (nope, we aren’t busy AT ALL). So, they put in the order and out they went (after telling me to take C to get her eyes tested JIC).
Then came the “therapy” time for us. Of course, this was when Hubs was not with me, but oh well. Our audiologist was one of the four ladies who came in. Additionally, there was a Speech Therapist, a Deaf Instructor and a woman who was HoH (other than telling me this wasn’t the end of the world – which I knew – I’m not sure what her function was). They were there to make sure that our family was being connected to the groups within our community who can help us help C. We are.
The HoH lady then asked me an interesting question. Am I going to be okay with whatever the answer is for the Genetic Testing? My answer, YES! You see, if it comes back negative, that C doesn’t have any of these 152 different reasons for being Hard of Hearing, it is still an answer. We have narrowed our search down. It puts us one step further on our adventure. They left and off we went to another floor and a blood draw and C was so tired that she fell asleep on the way up (the picture above is from that).
All in, this was about a two and a half hour appointment. Results take twelve weeks, so we should know before Thanksgiving.
Did I miss anything? If you have any questions, let me know!