Tuesday, February 3, 2009

Why I was up all last night.

Last night I stumbled across a blog, written by a mom of a child with autism. I was so sickened and upset by what I read, that I couldn't sleep. My heart raced, my chest pounded, my arm pits sweat. In short I was a wreck.

Here is a portion of what I read that got me so upset:

"Dont Mourn For Us. By Jim Sinclair.

I invite you to look at our autism, and look at your grief, from our perspective:
Autism is not an appendage
Autism isn't something a person has, or a "shell" that a person is trapped inside. There's no normal child hidden behind the autism. Autism is a way of being. It is pervasive; it colors every experience, every sensation, perception, thought, emotion, and encounter, every aspect of existence. It is not possible to separate the autism from the person--and if it were possible, the person you'd have left would not be the same person you started with.
This is important, so take a moment to consider it: Autism is a way of being. It is not possible to separate the person from the autism.

[This article was published in the "Our Voice," the newsletter of Autism Network International, Volume 1, Number 3, 1993. It is an outline of the presentation I gave at the 1993 International Conference on Autism in Toronto, and is addressed primarily to parents.]"

If you know a different kind of autism, the one that my daughter and I know, then perhaps you too have a pounding feeling in your heart right now. My reaction to this is:

Oh yes! I’ve heard about this before!
Children with autism aren’t in need of any help!
They are enlightened!
They have a higher level of consciousness!
That’s why my daughter screamed all day long,
Her eyes bugging out of her head,
Her hands flapping,
Like she was hallucinating!
Why she banged her head on the floor and the wall,
Why she couldn’t sleep all night,
Why she doubled up in stomach pain,
Threw heavy objects,
Hurt other children,
Ran into heavy traffic,
Acted like she was deaf,
Pooped and peed in her pants and
Didn’t speak!
How silly of me to help her.
I must have been a fool.

I'm not judging adults like Jim Sinclair, who are healthy and happy, so why does this article make me so furious? Because I have devoted myself to helping my daughter, who was not healthy or happy, and this article stands in judgement of me. This article insults me because it supposes that my daughter is fine, and that I am wrong to "change" her. It accuses me of doing her harm, which is the exact opposite of what I have done.

My daughter is a different person now. She is healthy and happy now. And I take full blame. Shame on me.

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