In the begining....

I have put off this post for a while. Partly because it is a very difficult time to remember. When Cotton was born, I knew in my gut that something was off. He had a hard time focusing and looking at me. I was scared to death that it was autism. When he was 12mo. I knew something was wrong. No longer able to be in denial, I started the journey to find out what it was.

When we discovered Cotton's albinism at 14mo. I was thrilled! He was visually impaired! That is why he is so delayed. I can handle this... you see in my mind it was far better than autism. So we started EI and the therapist came to my house reassuring me everyday that he was not autistic. One even brought me to the autism classroom and said "see he is not one of these kids" (gasp, I know).

But as time went by and my son continued to fall behind, I knew in my heart that it was more. I pushed and pushed for an evaluation, I got one, and the Doctor said come back in 6mo. We did and he was diagnosed with PDD-NOS, a catch all that in my opinion means your child is autistic and I am breaking the news gently. I thought okay, high functioning autism we can do this. I thought surely he will speak again any day now (he had four words at 13mo.). The last time I heard the word "mama" was on Mother's Day, 2004. I remember thinking "he hasn't said that in a while, so nice to hear." He never said it again.

When I hear someone introduce their ASD child as high functioning, I want to vomit. If there is a HFA, well then that insinuates, that there is a low functioning ASD. I refuse to label Cotton as either, he has skills all over the board. However, indistinguishable he is not. We have tried it all. We had a VBA program 40 hrs a week from 19mo. until 3yrs. We were GFCF/SF/Corn F, among other F's. We have worked everyday of his life to get him to the highest level of "functioning" possible.

I still pray,beg, demand, and throw numerous tantrums, for verbal communication. Cotton did not even start trying to say words until we started RDI, and his non verbal communication, is coming along nicely. I can not imagine never having a conversation with him. I hope, I do not have to.

I got my news letter for the Connection Center discussing previewing ahead. I just can't. I can not imagine a future with no words. It hurts too much to imagine it, or especially to write it down, because what if that year passes, and we still have no words.

So that is a summary of how we learned of Cotton's special needs. I have left a bit out, I am sure I will fill in the gaps in posts to come. So looking ahead to me means 1 day at a time. It is all I really can handle.