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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, September 26, 2006


Take Joy In Every Step

This morning I awoke to the same rhythm – get up and right to the computer and keep working before the opening of The Joy of Autism: Redefining Ability and Quality of Life. We open with the exhibition on October 5th.

Over an extra-large cup of coffee with milk and too much sugar, Adam quietly ate his eggs – he prefers them sunny side up with salt. I cut them – the task of poking them with the fork still a little too difficult for him. Max, his older half-brother, came downstairs and Adam’s face lit up. He grabbed a ball and persistently tried to engage Max to play with him.

Now, for those people reading this who don’t know much about autism, this was a pretty huge thing. Two years ago – a year ago, even – Adam would not engage anyone in play. If he saw a group of kids, he would head in the opposite direction. Today, he was persistent, laughing, throwing the ball to Max, kicking it. “Play!” he said a couple of times, in between expectant jumps, and giggles – and Max got a lot of hugs in-between.

This afternoon, the children in his JK class began playing with the ball in a triangle formation. Adam looked on. He edged his way in. And further in, still.

“Last year he was really tentative about joining in and this year I really see he’s trying to play with the others,” said his head-teacher, in that sweet, sing-songy preschool voice that I know will end all too soon as Adam gets older.

So I know that my patience is important with Adam. We never forced him to play with others. We tried facilitated groups, we practiced, but we never forced him. We just exposed him. I certainly worried. But the moment I stopped letting worry rule our lives, was the moment that life began to happen.

How can I not feel joyful for him? How can a parent not feel joy in every baby step? Is this not the purpose of our lives?

When my grandfather died in 1984 from a severe allergic reaction, I was devastated. I was his only grandchild and we had a very close relationship. In one week, his body caved in on itself. I entered intensive care, finishing my Grade Thirteen exams -- the ones that get you into university or not -- to see his body shrivel in upon itself. I told him I loved him. He couldn't say it back, but I knew it was on his lips as it was one of the rare times his body moved after I'd said it. When he died I chose for his epitaph:

The purpose of life is life itself. (Goethe)

This is the only life we have, folks. Take the joy.


Blogger Kristina Chew said...

Very lovely about Adam---best wishes in your event preparations.

7:20 PM  
Blogger Fore Sam said...

Should we "Take the joy" when our severely autistic child steps in front of a speeding car because he has no sense of danger?

8:11 PM  
Anonymous Anonymous said...

These words could be mine speaking about my daughter, who is almost 12 and I am very active in the autism community. My daughter is a twin and her sister is a "typical" child (whatever that means).

So.. I am very confused because in all my years of being "out there" with hundreds of parents of children with autism, not one of them ever rejected him or her for who they were. In our daughter's case, people are much more attracted to our daughter with autism vs. our typical daughter. Both are equally loved by us and their other sibling. I have only tried to help her --I have never tried to make her into something she is not and neither have any of the tireless and dedicated parents I have met over these many years.

My daughter was justin the hospital for two weeks because she had started to hit herself over and over again while screaming and crying uncontrollably. We were petrified as were her doctors... and there was a hugely dedicated team involved from all discplines working with us to help her. We never talked about not wanting her to be autistic. We spoke about how we could help her given the constraints that she could not accurately commmunicate with us what was going on despite being completely literate on her laptop and having age level receptive language.

Estee, there is no joy in helplessly watching your child hit herself so hard that her thighs and torso are covered in bruises.

We take joy in the amazing strides she has made in the last 8 years or so. Are we happy she is autistic? NO! But she is a very happy girl who spreads joy and love to others. Had we not intervened, however,and gone heavily into debt to finance her various therapies, she would probably still be sitting on our living room chair twiddling her fingers and rocking away in her own world, pushing us away every time we came near. She was unreachable -would you want that for your son? I know you wouldn't.

I am concerned that you have created some great divide that really does not exist between parents like you and me.

When Adam was first diagnosed, were you happy? I doubt it. Neither were we or any of the parents we know. And we realized early on that for the most part, our kids would never be anything but who they were and that made them unique. That doesn't mean we want to help them speak, play and be part of this world, does it?

6:12 PM  

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