After our first home visit we set up an appointment with an audiologist at the House Ear Institute. My son was tested and we were told he needed hearing aides if he was ever going to have usable speech or hearing. They also mentioned we wouldn't know if they would work at all. Insurance didn't cover them so we needed to pay $1200 out of pocket.
When he was tested with the new aides they told us he was in the speech banana! * this would be the only time they would tell us that, funny it was they same day I wrote the check, just saying...*
We picked blue ear molds because the normal color was so boring. We learned how to put a cord on them an attached them to his shirt so we wouldn't loose them. He didn't seem to mind them and rarely pulled them out. We got used to the whistling when they were loose. We got into a routine of speech exercises and battery changes.
Three days before his first birthday we ventured out to a popular bakery to pick out a cake. It was pretty crowded so we were there for a bout an hour. As I walked out the door with my son in my arms I noticed his hearing aides were gone! We searched the store and found nothing. We walked the street over and over, again nothing. We put up posters on every street post and waited. Nothing. We called the House Ear Institute and made another appointment. We had to get another set.
Over time we noticed he didn't respond to any noise or mimic any speech. We continued to work on it but were not really concerned. He was signing up a storm so we didn't need to depend on his ears for much of anything.
What I found most interesting is how people perceived him in public. If he had them on they treated him with sadness and pity. If for some reason he wasn't wearing them people treated him like a rock star. He was this cute little baby who can sign.
Today, what ever happened to those aides?
We were told they couldn't get an accurate test until he was older so we waited and continued to use them. We saw no progress with speech and decided that just wasn't his thing. By the time he was in pre school they were optional depending on his mood. One day he decided he didn't like them so we tossed them in a drawer.
Later when he was in third grade he decided he wanted to try them again. He was attending a Deaf School and the other kids were getting pulled out for speech. So we changed his IEP so he could have pull out speech. Turns out he just wanted to see what the other kids got to do outside of class. That lasted about a month. One day he tossed them in the garbage at school.
Later I wanted him to have a say in whether or not to get a CI. I asked the school audiologist to give me any promotional material from the CI companies she could find. I wanted the best sales pitch. My husband and I didn't want to find out later he resented us for not doing that. I sat down with him to watch a video from one of the companies. I explained he needed to have an open mind. There were a series of testimonials from elated parents and a few interviews with the recipients. One testimonial was a dad gushing about how his 8 year old was implanted and for the first time he could order from a restaurant! My son turned to me and asked, " Is that kid delayed? Why can't he order from a restaurant?" He couldn't wrap his head around why a deaf kid couldn't order from a restaurant. He turned off the video horrified at the thought of getting an implant.
About implants. We fully support some people going that route. I want to make it clear it was just not the right choice for my son.
You are on the roll! Keep these stories coming! It is so refreshing to see a different perspective, especially from a parent.
ReplyDeleteEach time you publish something, I get excited reading them!
Thanks for sharing.
Amy Cohen Efron
I'm also impressed...a parent that went the route and wasn't sold. It is difficult not to go for the attractive and enticing...I've been that route, too, with contractors and developers that profited from my believing in them. I will be fair and say that they delivered, but the products weren't what I was hoping for.
ReplyDeleteCongratulations for being willing to accept your child as he is and his decisions, even at that young age. I wondered, though...how well do you know today's deaf adults? Did knowing them influence your decision?
Ah thanks guys! So about deaf adults, I will blog a lot about that later but we have many deaf friends from all walks of life. When his was a wee tot we "interviewed" a ton of folks and it was a huge part of our decision. They were so kind to answer honest sometimes hard questions. We met oral, deaf of deaf, Deaf, hh, codas and siblings. We are forever grateful to all of these people. We found the deaf community is so willing to help if asked, that is the trick you have to ask. what made me sad was it was really hard to get the message out that we wanted help.
ReplyDeleteAgain, Mel, what you've said has resonated so much. I try to tell parents I come into contact with--TALK TO DEAF ADULTS!!! They're the best resource out there.
ReplyDeleteWe did the same thing with our oldest kiddo when he was about ten. Several of his friends have cochlear implants and he wanted to explore that option. As parents, we had explored it when he was around three, but opted not to go for it. So we explored it again at ten. I interviewed the folks from Sound & Fury and wrote an article and then did "Journeys with Implants" article too. My son decided he didn't want to have an implant and we supported his decision. He knows that option is there for him (he has relatively good use of hearing aids for his profound loss) and should he change his mind, he can go for it. Bottom line is simply, we love our kiddos just the way they are and give them the tools to live their life to the fullest.
ReplyDeleteKaren, well said. I admire you perspective.
ReplyDelete