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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

Sunday, November 20, 2005

My mother's birthday yesterday and her eldest sister died. I couldn't sleep again all night thinking about life, death, what's important and what's not. How unremarkable a life seems at the point when it is all most of us will be forgotten. I thought about deathdays as opposed to birthdays -- and how significant they are. I remember the days my grandparent's died. When I walk around Mount Pleasant Cemetary, I study not only the life span but wonder about those I wish I knew mine, knew Adam' long do we have and what will the rest of our lives look like? I just can't help myself think like this. The mind reels over and over in the darkest hours of 3 a.m.

I think about Jonathan coming to Toronto and how excited he is about having his show here in Toronto and how he should be excited. Everything he's about is being validated. And it's not just for the sake of his autism that I'm doing this. He is also a strong artist. His mother, Caryn, told me how he's having a hard time these days -- some aggressive bouts, how he hates having them. Is it the hormones of adolescence? Seizures? The medication he has to take? Frustration with not being able to communicate so that others understand him? One or all of the above? That's the mystery of autism. For many, it has some tough sides. Yet, his mom says that 90% of the time, he's happy and social, enjoys the recognition of his art ... a "joy," she says. I sighed. I can relate to that word.

Going to a regular nursery school was the best choice I could have made for Adam at this time. For all the fretting I did at the beginning, he is talking and relating more and more all the time. All of us have noted the changes. He is more curious about his environment and he plays more functionally on his own than I've ever seen. He still can do repetitious things, but sometimes I let it go for a while, and one he's finished, he stops and moves on, on his own.

It is Sunday. We're going to O.T. soon. We do it 2x a week now. It's been the best thing for him. Learning how to use his body, how to sequence his actions to do a task, has done wonders for him exploring the enviornment on his own -- like typically developing children do without any help.

My O.T. said that the DSM is going to change to include Sensory Disorders -- it certainly makes me wonder how many diagnoses' will change yet again. Everyone is getting diagnosed with autism now, but as we continue to refine the specifics of each child, we'll be better able to tell if a child who has sensory issues is as autistic as the psychologists tell us. Certainly, these are all brands of neurological differences in our children. But the more we know, the more we can do in the way of therapies. I truly hope I will never have to put Adam on any medication. I am so anti-meds -- I see them as temporary solutions, not cures. I prefer to take the therapeutic routes. Work and play and relate day in and day out. People don't realize my schedule or the schedules of other parents with children with special needs... Wake up, teach how to dress, teach how to eat with a fork (all of this takes a little longer), go to school, meet with teachers, work on programs, find a smidgeon of time to write, pick up Adam, have lunch -- teach to use that fork, get ready for therapy, meet with therapists, take part in part of therapy, put Adam for nap, relax with Adam (mommy time), get ready for dinner, all the while teaching how to request for things, to answer my questions, to discriminate between objects, make a choice... it goes on all day long... then at night, we have a new sleep ritual so that Adam can learn to self-regulate since his brain goes non-stop and he could otherwise stay up all night.

He plays around me now and waits for me to do something with him, circling my chair -- sweetie.

Max, Adam's 16 year old half-brother plays with Adam everytime he's here. It just comes naturally to Max...and last night at my mom's birthday dinner, we talked of Wills and who would take care of Adam should something happen and Max just said, "I'll take care of him." Just like that. No big deal. And I know he can and he would. And I know that out of anyone in the family other than my parents, he knows about Adam intuitively and he's seen what goes on day to day in this house. I know that he get's it. So Adam is truly lucky to have him. I am touched and even relieved to know that there is a person like this in Adam's life. I don't have any brothers and sisters, so this touches me to the core.


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