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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

Wednesday, November 09, 2005

For many months Adam never took to teddy bears. He does not cling to a blankie or a bear the way we see many other children do. Other comfort objects have included books, and comfort tactics, stroking his belly or my arm.

Yesterday, I pulled out the many stuffed animals we acquired from friends and family over the first few years. Adam hugged them and really took to Elmo and Cookie Monster. He loves Elmo and I realized that when he becomes distressed sometimes he says "baby Elmo!" almost as if he's asking Elmo to rescue him -- it has that same intonation.

He couldn't get enough of Elmo when I pulled him out last night. We sang "Elmo's Song" together (this Elmo is a puppet, so I used him as such). We sang over and over and over again -- he kept passing Elmo to me and asking "Elmo! Elmo's song!" He sings the last words of a sentence -- I've been using that intraverbal tactic for some time. We did the same for "C is for Cookie" song. I thought I was going to lose my voice, but hearing Adam's voice singing and all that eye contact and joy between us, I would have sung 'til I dropped.

So I put Elmo and Cookie Monster to bed with Adam last night. He gave Elmo "five", kissed him. I'm trying to use them for pretend play and the development of symbolic thought. He didn't seem to have any problem with any of it accept that it was repetitive. He did Elmo first, then Cookie Monster and we kept going like this. I then tried to vary it each time.

Every week, it seems the lights keep getting brighter in Adam. He still needs his time to do his letters (I let him line them up after a session or in the evening). He needs to do what he likes and what relaxes him like us all. But I find when we balance between having to keep working on his engagement and his skills, and letting him be obsessive for a little while, he is a happy, balanced kid. I'm not trying to extinguish Adam's "behaviours"...I'm trying to expand it without taking it away, for to do so might result in a behavior that is more difficult to cope with. I have seen little aggression in him. He gets a little angry with me if I don't do what he wants or one day, if I don't take him to bed and he's super-tired. I find that if I acknowledge that he's frustrated, he is grateful and calms right down. It all comes down to respecting your child and reading them correctly. If we feel acknowledged and loved, we all do better in life.

I'm trying to always figure out his sensory requirements. He is squinting a lot these days and I wonder if all the visual stimulation (he is a visual learner), hurts his eyes, or if he's just checking out the world -- what it looks like when he squints. He does love to hold up his arms and flick his hands (he has found that it makes shadows) and I am trying to just replace that with something else. I find if I start saying "hands down," it just makes the action more obvious to me, to him and to everyone else. It's like Tourettes and I see how neurologically there is a connection -- the body does things unvoluntarily. If you tell a Tourettes person to stop, they have to "do" their tics even more. So I try to replace it subtlely by distracting Adam. Better to look at a book or play with something else. And at home, give him times to just do it. I find that all his "stims" just end up going away. Another one pops up -- they all come and go.

I've been optimistic these days. I said to another couple two days ago that I wouldn't change Adam. He is the boy I have and who I love. I still lay awake many nights thinking about all this, worried about other kids who have autism who do not have the resources to pay for therapies, schools -- people who can help them along in life so that they are less frustrated. I have a dream -- that awareness about autism can be raised to such a level where we can set up systems to enable them.


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