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Location: Toronto, Ontario, Canada

Writer/Curator/Founder of The Autism Acceptance Project. Contributing Author to Between Interruptions: Thirty Women Tell the Truth About Motherhood, and Concepts of Normality by Wendy Lawson, and soon to be published Gravity Pulls You In. Writing my own book. Lecturer on autism and the media and parenting. Current graduate student Critical Disability Studies and most importantly, mother of Adam -- a new and emerging writer.

“There is no hope unmingled with fear, and no fear unmingled with hope.” -- Baruch Spinoza

Saturday, September 24, 2005

I am able to move around more this morning and sit with Adam during breakfast while my mother and Henry help out around me. I'm so grateful for my mother being here.

So, Henry said our friend of ours suggested that we should look at the Montcrest School for him. I heard it's a good school. It is a school for children with learning disabilities but is integrated. I'm not sure how they teach or how they integrate yet, so that is a number one factor. It's not what the glossy marketing words suggest-- it all sounds good -- it's what they actually do and what their philosophy is.

Last week, I took Adam to a neighbourhood drama/music class hosted in a friend's house. This friend built a separate building attached to her home with a glass tunnel. The building is like a school house - amazing for kids -- so she hosts this class and invited Adam to attend. I said that he should have his shadow there (therapist), so she just told us to show up. I thought it would be lovely for him to be with his neighbourhood peers. Treasa, this crazy woman with skraggy, curly hair that was thicker at the crown than at the ends, striped Lululemon pants and bulging eyes. She spoke cacaphonously while rapidly moving from one activity to another. I didn't expect that Adam could take her shrill voice let alone pace. But he was so happy to be with his peers. He followed them and pretended to be an elephant -- I've never seen him try this before. So he was clearly gaining something from the experience. Yet at the end, she didn't want us to come back. Despite the fact that he was a doll, was not disruptive in any way and was the only kid who could name the Dreidel song, she didn't want him back because he had a shadow, and I expect, because he is special. She said she would try with him later, but as I considered it at the pressing of my friends to return, I decided that it is better for Adam to be around teachers who really believe in him.

I expressed my dissappointment to the host. I told her that I found Treasa horrible for doing this. And now I may have made ourselves the target in their eyes -- a sensitive mom and a her disabled child. It's a terrible stigma, but I have to get over it. First, I feel I have to pick the best teachers for Adam. Second, I feel I have to speak up for him, but I wonder at what cost? If I speak up do I run the risk of stigmatize him more? Do I make him the centre of a negative kind of attention? Or does he get treated differently than the others. And is that bad? Here is the area that is new to me and I try to navigate. Now our friends are suggesting special schools for him. Do they do so out of kindness? Do they do so because they think Adam is not capable? I think he is capable of anything. In fact, I know he is smarter than the other children in some areas, and maybe even overall, but he can't express it all in the same manner yet. I refer to a quote from another autistic child from Paula Kluth's book, You're Gonna Love This Kid:

"All my life I was enrolled in classes for the profoundly retarted. The pain of that isolation, I can't describe. Some classes consisted of putting flashlights together and then they would be taken apart for the next day's project. I never spoke or made eye-contact. I hummed and self-stiumlated. No wonder they thought I was hopeless. I was always treated well but my intellectual needs were never addressed because nobody knew I had any intellect at all. Sad to say, many like me remain in that same, hellish situation."

His area that needs work is the social area and that may come more and more once he feels confident about all the other areas of his life -- knowing how to play and being able to handle the materials. Also, learning how to pretend play -- symbollic thinking, is something we are working on now too. All this will lend itself to an easier time in the social arena. Eventually, it will happen for him.

So it is not a surprise that I isolate myself a little. People who try to help, really don't get it at all, even though I appreciate their kindness. And in their helping, they innocently and unknowingly, isolate me even more. How can people know autism if they are not living it? He is not mentally retarded, so he can't be treated like that. He is not socially functioning like his peers either, so he is at risk for being treated like he is not intelligent. As Paul Collins wrote in his novel, Not Even Wrong, "autism is as much an ability as a disability, it is as much of what is present as what is missing." I've memorized that quote. It's perfect.

Or my other loving friends often ask how Adam is like he's got a virus. It's like he's supposed to be better soon, like his autism will go away. In the heyday of the "cure" -- when all charities and diseases are raising money for that grail -- I understand why this is an everyday question. But he will always be autistic. He will always be different. But he will be different too, thank God. He will be unique, intelligent, and if nurtured, may be able to exhibit his intellectual gifts as his vocation.


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