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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

Friday, December 02, 2005

 
I am marvellously tired. The opening and autism awareness event went as good as I hoped -- everyone seemed touched by Jonathan and floored by his work. We had over 200,maybe 300 people attend the opening! It was on Global TV. Friends who believe in me, admitted they were not expecting work of this calibre. I can understand -- what one might expect when you talk about raising awareness for autism is a nice little exhibit of student calibre work -- wonderful expressions of the human spirit, but still, not necessarily excellent works of art. That's the other reason why I picked Jonathan for this exhibit. Just like you and I, autistic work can be good or average. Why I picked this work is not only for its intense emotional conveyance, but for its artistic excellence - simple strokes of line that, like a well-written sentence, becomes loaded with feeling and innuendo. By picking good art, writing, music, the message is clear. The message about what is possible for autistic people is clearer. Like the rest of us, we trascend the burdens of life in the works of Mozart, Van Gogh, Picasso, Hemingway...you get the idea. Most people intuitively know the difference between great and average, and we seek the former in order to see ourselves and all that we can be. We rather fly freely in the simple sweeping air, than become snarled in confusion. Jonathan's work is simply that: lucid.

The evening was crowded, filled with the music of Rosemary Galloway and the Norm Amadio trio. Wine poured while everyone marveled or quietly took in the panels I installed, "The Voices of Autism: In Their Own Words," and contemplated. People commented how overwhelmed they felt. I was overwhelmed that they were overwhelmed, and I said it. I was excited that the audience related so well to this show, and yet grounded in my passion to express my belief in the abilities of autistic people, of my son. These expressions, the work, is easy when it comes to one's child.

Dr. Roberts spoke eloquently and it was wonderful how she shared the humour and the poetry of her autistic clients. Alan Lerman was incredible -- his dedication to his son was so apparent.Jonathan wore his headphones to muffle the sounds and greeted everyone with a hand-shake and asked lots of questions about the people he met -- names, where they were from. He asked my husband Henry, "why don't you have any eyebrows?" and Alan commented there would soon be a painting or drawing of him!

Jonathan insisted on staying until the end. He basked in the limelight and I was so excited for him. We stopped at Shopper's Drug Mart on the way back to their hotel (Jonathan's lense popped out of his glasses), and Alan ran in. I asked Jonathan, "Do you want some music?"

Pause. "Yes"

"Do you like classical music," I asked, twisting around to watch him.

Pause. "Noo!" An emphatic negative from a typical teenager in the backseat, in the dark.

"How about rock?"

Pause. "Yes." All was good now. I put on Q107 and on came The Doors.

"Do you like this?"

Pause. "Yes." He seemed calm. The flurry of the night ending as we rested on Cloud Nine. I thought I'd stop talking and let him relax, until he asked, "Are you sleeping?"

He was great. I could relate to some of this conversation with my son, as I teach him how to answer questions. He pauses as he needs more time to think about how he's going to answer, or what might be the right answer. I worried about speaking what I call "dumbspeak" to Jonathan -- that slower, more articulate way of speaking as if he can't understand if I go too fast. I worry I might be patronizing him, patronizing Adam. I can talk normally to Adam and now much of the time, he'll just do what I say, if it's a direction or I say we're going to do something. It's a hard call. Sometimes I have to repeat myself to Adam, to give him more time to process, and other times, its just as fluid as can be.

In the car with his dad and I, Jonathan would make comments, but mostly ask questions, or answer them. Coversation is more difficult, disjointed. His hand and his art are his dialogue instead. When Jonathan was younger, he didn't communicate. Now that he's older, he's communicating more. When he's older still, who knows? More still? Probably. People with autism often develop these skills later.

Caren, his mother, said to me today, that no parent should give up hope for their child. Autistic children need to be exposed to everything just like other kids, for you never know what they have inside them. She speculates that they would have never known that Jonathan had any artistic ability unless he had that serendipidous date with a piece of charcoal and paper at an after-school program.

I am glad that many people from the autism community came -- even the ones I may not agree with. I am terrible at politics and find it difficult to take extreme political stances in these court cases. I just can't agree with ABA and how they -- and this is a new one -- call it "the only life-saving therapy for children with autism." You gotta like that life-saving bit. Really makes a point, doesn't it? And yet there are so many parents I've met now who feel just like me. We see that therapies that focus social interaction skills help our kids significantly. Extracting from different approaches helps too -- I do a bit of behavioural conditioning in that we may use bubbles to get a response out of Adam that is more difficult to get -- but it's natural -- like giving a kid a lollipop to learn how to toilet train. In cases where motivation may not be as apparent to learn something, this approach can be helpful. But as soon as a connection is made, we don't rely on reinforcement, other than praise, for the sake of reinforcment. And we really don't use this that often because we taught Adam the joy of relating early on -- and that in itself garners his attention - something you need in order to learn. At the end of the day, children with autism benefit significantly from good teachers. Patient, knowledgable, willing to adapt to the child and his/her needs. It is not the teacher's agenda, but child's we're interested in. One can't learn, or learn the joy of learning and then become independent, if one doesn't feel the motivation from within. And to think that autistic children do not intrinsically have that motivation, some, any motivation within them, is to say that they are not human. Finding that motivation is the key to unlocking the learning process and the joy of living in the world -- something all autistic people are entitled to.

Even if at odds philosophically, we parents love our children. I hope the autism community can de-politicize autism so that we can get on with the business of helping our children -- seeing them as whole beings, accepting them for who they are, and helping them in areas of need as well as finding their niche in life.

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