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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, January 10, 2006


Wisdom Comes Through Suffering

As I said earlier, optimism doesn't come for free. I look at all kinds of positive stories about those who are autistic, who "presented" similarly, or even worse than Adam in the early years. The purpose of looking at positive stories is the same as an athelete's visualization -- the goal has to be clear. I believe the same approach holds for my son Adam. For me, it is a marathon that never seems to end right now. For Adam, it is the marathon he doesn't quite yet understand. Some parents who write to me seem so low -- their child will "never" do this or that, instead of realizing that their marathon, no matter how old the autistic person is, is just not over yet. Development can occur at any age. I've heard of 42 year old autistic people just becoming independent, just acquiring a new stage with such joy and sense of accomplishment. So I read and talk to parents of autistic people, now in their twenties and thirties, who struggled just like us, but now study jazz guitar, or teach mathematics. Things that just didn't seem possible happen only with plain faith and constant chipping away. This is the journey of autism.

I would be lying to you if I didn't tell you the moments of worry and doubt. These moments keep wanting to press in and strangle me. It is a battle not to let them. Here was one last night: I dreamt that I died while taking care of Adam. I am most often alone here with him in the house -- my husband works long hours and I don't have any live-in help. I dreamt that Adam's nanny was also sick and didn't show up the next morning, my husband was out of town and I died. Adam was alone in the house, his diaper getting fuller so he took it off and the feces bothering him that he smeared it all over the upstairs in an attempt to clean himself. He kept coming to me and pulling my arm, crawled all over me for a "squish," oblivious to the fact that I died. He soon gave up and chattered to himself in his room, preserverating with toys, walking back and forth, playing with his hands. This goes on for a while. He pees, he gets hungry. The phone rings -- my parents think we just must be out. Adam gets hungrier. He cries. He tries to climb over the dangerous gate to go down the stairs to get some food. He tries to wriggle under it (there is a space). He gets stuck and screams. No one can help him....

Isn't that awful? Consuming thoughts like this happen once and a while. I have to fight them off. I take a deep breath as I write this down, my eyes tearing. Deep breath again. I must shake this.

Isn't this the worry of all parents with autistic children? Just how long can we live so we can take care of our children? Eighty years? Ninety? What if I get sick? I am already forty years old. He is just turning four this April. When he is twenty, I'll be fifty-seven. When he is forty, seventy-seven (my aunt just died at seventy-eight). I don't think there is one parent I've met who doesn't have the same thoughts run across their minds.

Adam's stims have gone way up these days. I see so much potential in him, but these are the biggest obstructors. I am installing a swing in the basement for vestibular feedback (he becomes so much more organized when we incorporate movement into his day). We need to teach him more functional play skills so that he can redirect himself. We will provide him with a visual box that he can have at prescribed times during the day to give him the feedback he needs, but teaching him that he has to do others things at other times of the day.

I have been teaching him reading. This is going well. He does have some issues at discriminating words -- words that I know he knows will get confused with same-letter words if he is distracted. But if I teach him this skill, I am convinced it will help him communicate. I also notice that he is terrific with intraverbals, but I think he has learned to speak this way, so I am getting him to read complete simple sentences now in the hopes that he will understand them and use them. I am also fading back (backward chaining) my intraverbals in order to get him to say the last two words of a sentence instead of just the last word. I've just started doing that and it seems to be working. If I had to evaluate his progress against last year's, he really is speaking a lot more. He is tranisitioning well, he has been weaned effortlessly, and he is taking to potty training very well. He loves art-making, has begun to spell words (albeit with inconsistent interest in doing so), and is learning to read. He adores music and is singing more songs and is slowing learning to imitate actions, even if they are still delayed responses, he never did actions before. He has improved his motor skills -- can hold a pencil better, can draw, can climb, and is beginning to jump off higher surfaces. There is more, but I think that's enough to convey how much progress he has actually made. It is all these steps we have to remember every day.


Blogger MOM-NOS said...

Estee, I just discovered your blog today - it is really terrific. Thanks for sharing both the good and the challenging. I look forward to getting to know you and Adam better!

11:40 AM  

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