First of all, she IS really deaf!!! There are many levels of hearing loss- mild, moderate, severe, and profound. My girl is profoundly deaf. Basically what this means is that she might be able to hear a chainsaw at close range without any amplification (I personally doubt it). When her cochlear implants are off, she basically hears nothing- I can scream her name at the top of my lungs, but she will not turn her head. Now if I add stomping or jumping, waving my arms, turning the lights off and on (you get the picture).. then she will look in my direction.
Yes, she does have bilateral cochlear implants (CI), but that did not take her deafness away by any means. She received her first implant at 21 months and the second one 6 months ago, at 7 years old. You see, we were told in the beginning (before her first CI) to not expect much from Amelia's CI- that she might get environmental sounds, but it was very unlikely that she would hear speech sounds because of her abnormal ear anatomy. I am happy to report that she is getting so much more. She detects speech sounds at almost normal hearing levels (20-25 dB). Normal hearing is 20 dB. But, her speech discrimination is only 30-50%. Basically what this means is that she can hear that someone is talking, but can't understand what they are saying most of the time. So, because of that she has not developed good speech. She has some spoken words, but not enough. We tried an oral deaf education program for 3 years, and with such little progress we decided that adding sign language would be our best option. She was 4 years old at that point- with minimal language (maybe 100 words that were unintelligible). We currently do total communication, which basically means that we will communicate with her anyway that we can-spoken, sign, pictures, etc...
So, maybe you wonder what it is like or how it feels to have a deaf child. Well, when we first found out she was deaf, I was devastated. Selfishly, I remember thinking that she would never hear my voice or how beautiful her name is. I also remember feeling guilty for being sad that she was deaf. I told myself that I should just be grateful that she is alive (I really wish that I would have allowed myself to really grieve her hearing loss at that time). We had lots of support for Amelia, but there was no emotional support for us. When she was a baby, you never really knew that she was deaf, but as the girls got older the reality of it set in (especially since Hannah was an early talker).
I have certainly come a long way, but I would lie if I said that it never made me sad that she is deaf. I think that is just part of the daily grind that goes with having a special needs child. Dealing with all of the issues that go along with her hearing loss is harder than anything else that we do-basically because it touches every part of our day. You know that communication is important, but imagine not being able to communicate with your child. It horrifies me. What makes it worse is that about 80% of parents with deaf children that sign, never learn sign language. I REFUSE to be one of those statistics!!! We are studying American Sign Language (ASL), but it is so hard to learn. It is definitely not English. The days get hard...Amelia screams a lot, homework can be a bear, we all get frustrated when she wants something that she can't figure out how to tell us, etc... You get the idea.
On the other side, there is so much about Amelia that makes her who she is because she is deaf. She is so animated and expressive and has personality plus!!! She is so funny. She loves to sing (of course the rest of us have no clue what she is singing). She is amazingly smart. She is so visual and picks up on little details that the rest of us may miss. We have been told that "Amelia is deaf with a capital 'D'", "she is a true deaf", and "that her deafness is just in her." And all of that makes her the little girl that I LOVE!!!!
Yes, many people that have CIs have perfect spoken language and you would never know that they were deaf, but that is not my child. There is no technology that can take her deafness away from her, and I am grateful for that. My child is DEAF and I love her for who she is and am so proud to be her mom!!!!
Amelia singing/signing "Jesus Loves Me".
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