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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

Tuesday, December 20, 2005

Yesterday, I was frustrated. So Adam demonstrated what he could do. Here's a little note I wrote to all of Adam's therapists this morning:

It is interesting to note that Adam does not stim at all during art activities. He is focussed and engaged. This tells me that he enjoys the visual stimulation of art and that he is desperate to learn. Morgan always plays classical music while he's making art. Adam loves music too -- all of this is a great gateway to learning, language and socialization.

Here's a little story of what happened last night: As you know, Adam's stims have been up this past week or so. His attention has been challenged (seemingly). I've been teaching him how to dress himself intensively this week. Last night, before bed, I took off his socks and threw them over the bed adn onto the floor. When Adam was playing on the bed a little later, he spotted one of his socks. He focussed on it, got off the bed, grabbed it, came back on the bed and laid on the pillow and began putting on his sock. He said, "sock!" Every time I worry, he gives it to me. He lets me know he's paying attention, even though it doesn't look like it and he can frustrate me. There is no doubt that he has to learn what's appropriate by learning to pay attention -- especially in the classroom or with other teachers. But then, Adam teaches me that even though he doesn't look attentive, he is paying attention. Sooo, I wonder if this is a fine balance of moving along with programs and EXPOSING him to lots of things even when you think he hasn't mastered it, even if done incidentally before formally. Because of lack of attentiveness, I believe that kids with autism could be held back needlessly because the rest of us think they aren't learning. I sure hope that Jonathan and Adam have demonstrated that this is not necessarily so.
Adam always gives me these surprises, just so I know that he's with me.

Now, I have another good story after all the disappointing school calls I've been making: Eric from Crestwood Valley Day Camp. I had a long conversation with him and have enrolled Adam in his camp for 3/4 days. He wants Adam and asked all the right questions and wants to keep him challenged while recognizing his needs. It was a relief to finally talk with someone who cares and gets autistic children. We talked about the challenges of finding schools and he suggested Willow-wood. I will have to check them out. Apparently they have dond a nice job with integration, even though they started out as a more special needs school. So too, I will be meeting with Gail Baker of The Toronto Heschel School to see if she would be amenable to my starting a program there that would work for autistic kids. The goal really is to keep them integrated. I know Adam would do well there, and it is not fair for us to discriminate against him, and children like him, just because we think they are not paying attention. Not when he will actually get something from the experience, even if it looks different the way the rest of us acquire knowledge and learn. I think this just about sums it up. If we truly appreciate the way the kids learn differently, the way they need to be with other kids of all types, perhaps we and teachers will learn to appreciate their unique style of learning and being, and never underestimate them again.

So I am sorry I said I hated autism yesterday. Like us all, I have moments of frustration and self-doubt. It lasts about an hour, at worse, a day. I'm just trying to be honest here. Otherwise you might think I'm not real. And boy, this is REAL.


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