It’s David’s birthday!
It seems I usually have things to say on David’s birthday. And that makes sense. With the birth of David, I entered the realm of the parent. I became a Mom.
I vividly remember having not the least clue about bringing up babies. I remember hoping when he was still in utero that he would be a girl because I grew up in an all female household and I didn’t know how to do boys.
And then he was born, and it all seemed so easy.
He was born one day after he was due. I was in labor with him for about eight hours, and it only took me 45 minutes to push him out. As I recall, his Apgar score was 8. When I got him home, he had no trouble at all with nursing and I had no trouble at all with any of the mechanics involved — nipples, oxytosin, or milk. He hit all his physical milestones at or before the average. Physically, he was textbook perfect.
But slowly, we began to realize that things were wrong.
We asked for help when we noticed that he still wasn’t talking in sentences when he was two years old. He was evaluated and ended up getting speech therapy, occupational therapy and physical therapy. He was also classified by the education system of the City of New York, and sent to a special ed preschool for all his services.
From there, I had to fight to get the classification of “mental retardation” off his records. I had to fight against a system that wasn’t really educating him because they “can only go as fast as the slowest kid in the class.” It took me seven years of fighting to even get a real diagnosis: Aspergers Syndrome.
Now, they call it Autistic Spectrum Disorder. It’s still the same stuff.
Missing most social cues. Difficulty with interpersonal interaction. Almost fanatically pursued interests.
So, I found out everything I could about Aspergers Syndrome. I adjusted my expectations based on my research, and I did my best to support him and nurture him and love him. When I concluded that his school was not doing a very good job of educating him up to his cognitive capabilities, I pulled him out of school and taught him myself. I homeschooled him for six years. I was able to teach him a lot.
But as he got older, I noticed that he was having more trouble performing academic tasks then he used to. A few years later, his sister sailed past him in academic achievement and I began to wonder. I had no idea, really, what was happening. Not until the first time he was rushed to the hospital on a suicide watch, and diagnosed there with schizophrenia. That was the first of three times he was hospitalized in a psychiatric unit and the third time turned out to be the charm. Previous prescriptions were ineffective but when they finally put him on the strongest stuff available, that did the trick.
But in the meantime, I went through all the feelings you can imagine. I felt guilty that I hadn’t recognized that something was very wrong. I felt frightened about the repeated suicide watches. I also felt frightened about the information I found online about the suicide rate for schizophrenics. I felt burdened when I realized that there would be no growing up and getting married and starting a family and all that “normal” stuff you expect for your kids when they’re grown.
Sometimes, I still think about the kid he might have been. He wanted to be a pilot and his hand-eye coordination was so fantastic that he would have been really good at being a pilot … if it hadn’t been for the schizophrenia. I think about the kind of big brother he would have been to all his siblings and it breaks my heart to watch the careful way they have ended up treating him like an infinitely younger sibling because that is what he has become. I cry inside when I watch him try to navigate his world, and how many of the things in it are so terrifying to him primarily because he can make sense of very little. It is all bewildering and random to him.
So, I have once again adjusted my expectations. When this disease enters into its acute phase, usually during puberty, one of the things it does is to destroy brain tissue mass. It literally eats the brains of schizophrenia sufferers; in an article I read, one doctor was quoted as saying “it’s like a forest fire of the brain.” David’s case of schizophrenia is severe, as I mentioned before. He has lost quite a lot of his cognitive functioning. It appears to be impossible for him to learn advanced material. His reading comprehensive level is much lower now than it was when he was 14 year old. Emotionally, he is about five.
But he is still my first baby and that makes him incredibly precious to me. My heart aches for all the life he’s not going to get to live but, for all that, he is as sweet as he is self-involved. He is as friendly as he is bewildered. He tries so hard that, even when he doesn’t quite get it right, I still want to love on him and give him the kudos he plainly asks for. He’s a darling and everybody loves him everywhere he goes. If the schizophrenia is his cross, then his lovability is his gift.
He turned 29 years old today. I wouldn’t trade a single second.
Happy birthday, David. I love you.