Friday, April 17, 2009

reality sets in...

The shadow of autism has haunted our family since Benjamin was very young, courtesy of his speech delay, obsession with routine, and unusual attachment to the letters of the alphabet. I worried about Ben, yes, but no matter what they said, I never really believed it was autism. Because a large percentage of his relatives have obsessive compulsive disorder, I recognized and understood his behavior and I somehow always knew he would be okay. And he is. His speech is almost caught up and he is already learning to read. He has tons of friends at school and he expresses emotions readily (sometimes too readily).

And then we had Elliott. And he too had a speech delay. But even before that, as an infant, he never really wanted to cuddle with me. When he cried, my touch was less a comfort than an irritant. He literally never really hugged me until he was nearly 1 and a half years old. Okay. He wasn't cuddly. But then he wouldn't talk. He acted as though he were deaf and he made poor eye contact. He doesn't get the relationships between things or understand that language is a communication tool. He started to learn words, many of them actually, and then he stopped. Now, pretty much all he does is pretend to shush someone or pretend to sneeze or pretend to cough, empty immitations. Sometimes he waves good bye. He used to blow kisses, but rarely does that anymore. He tantrums uncontrollably and nothing I can do makes him feel better. That's the worst part, the part that makes me feel the most helpless. Mothers are supposed to comfort their children, and I am useless.

I have spent the past several months in denial. He shows affection sometimes. He makes eye contact sometimes. Maybe it's all just one big hearing problem.

Yesterday the woman than works on him with his language development told me she is fairly sure he has autism. I trust her the most because she's the specialist who spends the most time with him. When SHE finally said what she's been hinting at for the past few months, I felt something break inside of me. And now I know. I just know that if he doesn't have full-blown autism, he has some other spectrum disorder. And so I tried not to cry in front of her. And I have been trying to keep it together all yesterday and all of today. At work, I am telling a student why his thesis needs restructuring and autism autism autism is running through my brain. Suddenly the shadow is a real thing, a monster lurking. Suddenly, I believe in it.

He sees a neurologist and a developmental specialist in the next two weeks. His audiology appointment (the 7th one?) is next month.

The worst part about all of this is that autism is this amorphous, confusing diagnosis and based on all of my research it seems like no one really has it figured out, though there are lots of treatments you can try. I am a person who wants to fix things, to control them. And this is way beyond me.

I want Elliott to be happy and healthy. I want him to have everything. I want to get inside of his brain and make everything connect the way that it should. He is this sweet and beautiful boy and he doesn't deserve this and I feel as though I have done something wrong, that this is partly my fault.


Anonymous said...

We've got this boy's back. He's going to live a wonderfully healthy, happy, and productive life.

Love you!


GingerB said...

Angela, I clicked on your blog after seeing your comment on Girl's Gone Child. I am dealing with a similar thing, trying to handle the reality that my infant daughter has perhaps, cerebral palsy, evidenced by her developmental delay. The phsycial therapist we just started working with is quite clear on her having hemiplegia, but he doesn't care about the diagnosis, just wants to get going on helping her motor skills improve. Is it my fault? I'll probably find a way every day to make it so, even if it isn't. And the crying? THE CRYING! My sinuses are killing me! Oh fuck, I am also a "big job" professional and while I am working the other track in my brain screams at me. I so feel your pain. I am sending you support from my house - this part of mommyhood is terribly hard. Do what you can to ease the stress, girl!