My second son is Autistic. I hate it. I work within the confines of his “disability” in everything we do.
He is eight years old. People think he is a very sweet 5 year old. His 6 year old brother talks better than him and generally is starting to ovretake him in everything.
I hate not being able to talk with him about the beauty all around. I hate how he cannot tell me what is bothering him. I hate asking normal questions like “how was school” and then having to rephrase because today he can’t remember the difference between “was School” and “are you”. Tomorrow it may be a different response. I hate still having to tie his shoelaces. I hate having to check his mouth occasionally to see what he might end up choking on next (oh a watch battery, well that’s better than yesterday’s found-in-the-yard plastic straw). I hate being nervous about dropping him off in front of school alone since I once rounded a corner and saw him being kicked to the ground by another “normal” kid who knew he wouldn’t be able to explain what happned. I hate worrying that some stranger will entice him away and he will be forever lost because he can’t remember the city he lives in much less the address or phone number. Forget teaching him to use the phone…. an operator wouldn’t have a prayer of understanding him and would probably hang up thinking it is a prank.
I hate all these things….
Someone showed me a website put together by someone with Autism. In his essay he remarks how when a parent says “I wish my child didn’t have autism” he feels that the parent is denying the child’s primary identity. I can see what he means.
But he is wrong.
When I say “I wish my son didn’t have autism” it is like saying “I wish I didn’t have to wear glasses”
I refuse to believe that Autism alone defines my son. I refuse to believe that any disability defines a person. I understand that many personality traits would not be in place were they not reactions to the disability.
I am very very short.
Some of who I am is related to that fact.
But that is shaded by being female.
That is shaded by being white. By being poor. By being educated. being raised non-religious, free-thinking, having no mother in childhood, having my best friend die in adolescence, being married, getting divorced, having my heart broken, being helaed
AUtism does not define my son.
It colors his personality, just as being his mother colors my personality as well. Autism is something he looks through to see the world. Sometimes I have no doubt what he sees is beautiful and I cannot see it. No matter how beautiful it is, however, it cannot balance the view of endless work and incomprehension he and I both see.
SO we work on it.
Sometimes we both fight it, but mostly we just work.
Don’t tell me it will be okay. It will be work and it will be a fucking pain in the ass sometimes, but this is what you do. It will not be “okay”. It will NEVER be “okay” with me that he is striken with this DISORDER.
HE will always be more than OKAY in my book because aside from the Autism, inside the Autism, and behind the Autism is MY child. I’d know him anywhere.