Thank you all so much. I wrote this post and then retreated into the land of denial or something. I'm feeling stronger now.
My son was born with congenital CMV disease. We were told not to expect him to walk or talk. Thankfully, he both walks and talks. He has had profound hearing loss in his left ear his entire life and is now exhibiting moderate loss in his right after almost 5 years of perfect hearing there. I can't even express how grateful I am for those 5 years of hearing. He speaks English, he knows all of the letter sounds and blends of our language. He is bright.
There is no trajectory that he is expected to follow. He could continue to lose more hearing, he could stay the same, it is possible (but highly unlikely) that he will regain hearing.
He has an IEP already, they had told us that he might lose that IEP after it expires in 2013 if he does well in school. I am prepared to fight to keep it. It is in our favor that I already have a good working relationship with his future school. I am thankful that I played my cards the way I did when my dd was at that school last year, once they saw dd's COGAT scores they were surprised that I wasn't more vocal in her favor. (She was getting the education she needed elsewhere and we were just at that school for "fun.")
We meet with another audiologist on Tuesday. This is his regular audiologist who has tested him since 6 months of age. The test we had two weeks ago was with an Au.D. from the school system. I have no doubt that her assessment is correct, we just need to get in with our regular Au.D. to move to the next steps.
The first audiologist said that his hearing loss is right on the cusp on needing versus not needing an aid. I would rather do too much than not enough and I would also rather have him get used to using a hearing aid at a younger age. We were told when he was first diagnosed that aiding his bad ear was out of the question because it would be too confusing since his good ear was so good. I am not sure if cochlear implanting is the answer at this point or not. I will be sure to ask the ENT and Au.D. next week.
I will put in a call to the school system on Monday to ask about ASL. I wonder if they will teach the whole family or just ds?
Where we live we have several options. Local public school with an IEP and the option of moving on to a full time GATE program in another building (where his sister goes), an aural program, an ASL school, or a private day school. At least those are the options I know about now. I am glad to hear the opinion that matches my gut feeling of keeping him mainstreamed.
Thank you for taking the time to respond to me. It really means a lot.
