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Friday, July 9, 2010

Deaf vs Hearing.

Deaf vs Hearing. Something I hadn't given much thought to until Nicolas was born and now cannot get out of my head. I've been blessed, truly blessed to have these two little guys in my life and I would not change anything at all about them. Well maybe if they could not scream so much that'd be great. But there is the everyday constant recognition that there are things that Nicolas can do because he's hearing that Philip cannot because he's deaf.

I have absolutely no problem with Philip being deaf. In fact when I was pregnant with Nicolas I found myself wishing that the baby could be born deaf like his brother. It actually was a little bit of a shock when we found out that Nicolas could indeed hear, I wanted another deaf child so badly. But it was a bigger shock when we had found out that Philip was deaf.

When we finally got an answer to the big can my baby hear question Philip was 3 maybe 4 months old and had gone through numerous hearing tests. That final test was terrifying. I have since forgotten what it was called but I will never forget that day. I was not allowed to nurse my baby before the test. So that in itself was rough. I felt like I was starving my child. Then when we arrived at the appointment the very first thing they did was administer a medication that sedated my poor new baby. While waiting for the medicine to take effect they put 3 little sticky probes on his little head, one on his forehead and one behind each ear. These connected to wires that ran to ports in the wall. The poor little guy was laid in a hospital crib and we were told to sit several feet away while a nurse stood over my child and we had to remain quiet for the duration of the test. Several minutes later we were told the results of the test. The doctor was very blunt about it. Our child was profoundly deaf. He spent a minimal amount of time explaining what that meant and showed us on a chart what his hearing levels were like. The sort of things he could and couldn't hear. Then the doctor gave us instructions on when Philip would wake up and what to do and a referral to another office to get Philip fitted for hearing aids and we were sent on our way. Shock of our lives there. We were not prepared for a deaf child at all. We didn't even know it was likely. Thank god for my parents who helped us a lot get through that initial shock and to my mother for taking me to the Rochester School for the Deaf to immediately enroll Philip into their FIRST program.

After the initial shock and adjustment we accepted it and moved on with our lives. Philip has never been given special treatment from us because of his deafness and we taught him both English and ASL. He picked up both pretty quickly. We knew from our interactions with the children of some of our friends who were around the same age as Philip and from his evaluations through RSD that he was behind in speech but we understood him and we were all pretty happy. To this day he is still slightly behind but he is pretty fluent in both languages. He communicates very well and has thrived at RSD.

Now Nicolas has entered the picture. My hearing boy. He took some adjustments getting used to. He would wake if we were too loud. He was more figidity as a baby which I believe was due to the stimulation he would hear. He was more easily distracted when nursing. But the biggest difference, the difference that is causing a lot of heartbreak is how much more he picks up now. Almost 2 years old his vocabulary is about where Philip's was at 3 and he picks up new words much more quickly then Philip ever did. He picks up random words in conversations that occur around him and he learned to ask "why" at a much much earlier age. We did notice these differences but it really hit home the other day when we were watching Nick Jr. One of the characters on the show we were watching directed a simple yes/no question at the audience. Philip has never talked back at the TV. Nicolas answered the question. BAM. The difference between hearing and deaf.

The biggest difference, the heartbreaking difference is not how much they talk or what they can say. The difference is the comprehension. Now I wonder how much of what I say to Philip he really catches. What does he truly hear and more importantly understand? Can his deafness hold him back in any way? It's just TV and I really don't want my children watching much of it but is it for Philip just some moving images with garbled sound or is he picking up something from it? Most of what we watch is slightly educational, stuff like Wow Wow Wubzy, Dora, Deigo, and WonderPets. Other kids his age know the character names and theme songs. They talk back to the TV. Philip does none of this. He doesn't know most of his favorite characters names. He knows the main ones for whom the shows are named but the side characters, no.

I wish there was more I could do for my baby. I want to take him to the book store during story time and know that he understands, I want him to get some benefit from the TV shows he watches, I want to be able to shout a direction to him from the other room and know he understands me. I know many adults who are deaf and most seem pretty happy with themselves but I wonder how many of them feel like their deafness has held them back in any way. I don't wish he was hearing, I don't wonder what it would be like if he was hearing. I just wish there was more I could do to help him adapt to the world around him. Even in Rochester it's a hearing world. I know TV will be different when he learns to read and can benefit from captioning but everything else.

If when he's an adult he chooses to be Deaf and prefers to use sign and go to a deaf school/college, and have only deaf friends or a deaf girlfriend/wife that's fine. I accept that it's his decision. But it is a hearing world and I want to give him the skills that he needs to adapt. I don't want his deafness to hold him back. I want him to be able to choose from hundreds of colleges which one he wants to go to and not be limited to the handful of deaf colleges or rely on an interpreter. If he chooses to use one that's a difference then needing one. I know being at RSD is helping him a lot. He's benefited a lot from being there and in the last year or so his language skills have really blossomed. He's an awesome kid and so smart. I just wish there was more I could do for him.

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