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The Intensity of Mild Autism

(Page 2 of 4)

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The social worker in the booth is explaining to me how exciting this is, since it generally takes several "prompts" to get my son from one group activity to another: they have to verbally tell him it's time to go to the snack table, then take his hand and walk him over, and then pull out his chair for him to sit. The sting that accompanies these kinds of observations about your child never really goes away—it just gets less sharp with time. You don't physically flinch anymore, and you use the remarkable progress he's already made as a salve. Since his therapies began two years ago, my son has learned how to point, clap and wave. Although he had always understood social cues and made eye contact with immediate family, he has now demonstrated to each of his umpteen therapists what an expressive, inquisitive, and genuinely fun companion he can be in his one-to-one sessions. But put him in a classroom with a few other children and throw in a few expectations, and he hides himself away.

My son has managed to kick it up a level by taking another step forward, and now he stands still with his eyes closed. Although I want to hear what the social worker has to say, complete with its sting, I want to hear something else more. I want her to tell me that he'll be okay. That clear and simple statement that would be completely unprofessional, not to mention unwise, is what every parent like me wants, and the desire is so desperate that it is a palpable part of any conversation with any therapist at any time—even a quick update in a hallway. My husband and I have learned to bury this obsession so that it doesn't cripple us, but it would be a lie to deny its existence.

Although it would be a real victory if my son made it to the snack table, our struggle would hardly be over, even if he were able to enjoy his peers and play with them in a classroom. My son has an even more pressing problem: he has almost no expressive language. He understands a whole lot, but he is appraxic, which is another one of those new words you have to learn: it means your child can't coordinate his breath and the muscles in his mouth and tongue in order to produce speech. By the time typically developing children are three, they have already learned most of the words they will ever use. My son had zero words at 18 months (and 19 months, and 20 months…), and we panicked. We felt like we were dodging a slow-moving bullet aimed at our son, and we had this small window of opportunity to move him out of its path. So we followed our first instinct, which was to drag him to safety with all our might. He was going to talk, sooner rather than later, and my husband and I were going to make that happen. My son has always loved videos, so one morning, I paused the video. When he turned to me to complain, I pointed to the ball frozen on the screen and asked him to say "ba." I was not going to let him slide on this one—I was going to literally will him into speech. My desperate little boy grunted at the video, which was his way to tell me to unfreeze it. I refused. This was combat. At first he was confused, then upset, then angry, and finally after 20 minutes, he walked away and quietly began playing with his stacking rings. He had clearly waved a white flag and I had to lay down my weapon. I'd like to boast that I learned my lesson and never again demanded that he perform beyond his capabilities, but the truth is that every once in a while, we need to test the waters. Can he really not do it, or does he just need a stronger motivator? What I did learn was that I needed to respect him more. At that time, he couldn't speak. He was managing to communicate, however. He was managing to tell us that brute force wasn't going to work, and that he was not a scientific experiment—he was a person, albeit a small one. We had to find a way not only to encourage his hard work, but to honor it. We had to make the choice to be proud of his efforts instead of disappointed by his excruciatingly slow progress.



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Charities: American Red Cross Autism Broadway Cares/Equity Fights Aids Christopher Reeve Foundation
City Harvest Doctors without Borders Greenpeace Fund, Inc. Juvenile Diabetes Research Foundation
Michael J. Fox Foundation for Parkinson's Research Young Survival Coalition
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