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All for one, and one for all

Posted May 31 2010 6:14pm
Trying to find programs and settings that are appropriate for Joey can be very tricky. He is something of the poster child for "if you've seen one child with autism, you've seen one child with autism." His use of language is unique, yet he does speak and communicate. He has the social disability of autism, but craves being social (That autistic kid who stares out the window? That's not my kid). He can handle a variety of settings and an elaborate schedule, have 15 different teachers and four whole different classes of schoolmates, but he has to know exactly when he will go to which place and what to expect there. In trying to piece together placements, I get a lot of comments to the tune of, "Oh, let's put Joey here, he'll be such a big help to [someone else's kid]!"

Riding out to Grandma's, the boys are already hot and tired, and its not even 10 am. Andy is screaming for silence. Joey is chanting, but there are no words there, no soundification, just odd tones and squeals. It isn't his usual stim. The more Andy squeals for quiet, the louder Joey chants.

"What's up, Buddy?" I call back, a cue to them that Mommy has had enough of the noise and bickering.
"I wan Doey t'stop dat NOISE!" Andy complains.
"I'm being Ethan*!" Joey giggles, and goes into another round of the chant. I frown. Ethan is a child in Joey's class, and it hits me how exactly Joey is copying the non-verbal child. I know Joey gets upset when he knows he is being mocked; but this isn't exactly mocking, it is taking on another's oral stim, though he has taken it on partly because the sounds amuse him.

Joey helps Ethan. He is a good model for classroom behavior, for oral communication, for regulation, compared to where Ethan is in his development. What does Ethan do for Joey?

"We need to be respectful of our classmates and friends, even when they aren't here," I remind him. "Please find something else to say." But there are no current chants to redirect him, and he soon lapses into Ethan Sounds. He's hot, he's tired, the sounds are amusing and comforting, and they vibrate his mouth in a way I know he particularly likes.

Last year, there was a parent who complained about Joey being in a mainstream class with their child. They were unaware that I was the parent of "that child", standing next to them as they demanded what my child did for theirs. If teaching their child acceptance and patience wasn't enough for them, perhaps Joey also taught their child math? After all, Joey's a shining star in the subject. But what do other kids teach other kids? Social skills? Language use? The latest cultural trends? Can't my child have something different to offer? Another way of thinking about the world and expressing those thoughts, maybe?

Yet we face the issue of Ethan Sounds, and often the behaviors of other children. Just like normal kids who pick up bad habits and bad words from school, Joey picks up on what his classmates do. Only to be honest, if a regular kid grows up to say "damn!" (or worse) won't become a social pariah, even if we find the word crude. But a child who picks up biting, or soundification, or a plethora of ritualized and repetitive behaviors to then ritualize and repeat, will find themselves in a difficult position to find employment. When a non-autistic child picks up a poor adult behavior, it blends in with the crowd of poor adult behaviors that have become social norms. When an autistic child picks up on poor adult behavior, it appears to be magnified and make them stand out all the more.

Yet we must weave together strengths and weaknesses, create a fabric of services and educational models that can hold everyone, and act as a safety net when they stumble. Everyone has something to share. That is what inclusion is all about.


*Name changed.
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