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The Big Six

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By Jeff Stimpson
Autism Asperger’s Digest
| November/December 2009

My son Alex enters sixth grade this fall. He is 11, diagnosed PDD-NOS, and for six years, counting kindergarten, he’s been in the same elementary school. There they taught him to add a number or two, eat the cafeteria chicken, sit through a movie, recite the Pledge of Allegiance, say his name when asked (so they claim – he hasn’t done it for me), and wish a good weekend to classmates on Friday afternoons. Six years. He may never be in one school so long again, and the time has come for him to leave.

I should feel glad. Any grade seemed like a teasing dream 11 years ago, as my wife Jill and I stood in a neonatal ICU and watched Alex, our first child, live in his plastic box. He’d been born almost three months premature, and weighed 21 ounces – about as much as four sticks of butter, as I discovered in a grocery store one night. His arms and legs were as thick as felt markers, about the size of a G.I. Joe’s. Alex lived in an isolette, a breathing tube down his throat, in a room full of other boxes and other preemies, amid the bells and buzzers of life-support gear. Alex would roll his eyes in there, wrinkling his forehead just like my dad used to, clutching at the tube silently with a perfect tiny human hand.

Eventually we got to hold Alex. First time for me he was still ventilated; he sounded like a tiny Darth Vader. Alex was featherweight, devastatingly important.

“Jeff, he doesn’t look at me,” my wife Jill would soon be saying. And he didn’t. His eyes flicked over the walls, over his isolette, at the red numbers behind the bells and buzzers, but rarely on our faces. We knew this meant something, but back then we weren’t sure what.

We brought him home in the summer of 1999, when he was one year and two weeks old. He was a plump thing, fattened on the feeding tube they claimed he needed, his oxygen cannula cord dangling behind. Early intervention therapists came soon after too, for feeding, eating, occupational and physical therapy: Alex qualified for the whole, well, spectrum of therapists. Some therapists he liked. Some he ignored, wobbling like a baby Buddha on our living room floor.

One therapist he loved was Ron. Alex always brightened at Ron, who blew bubbles for Alex, showed him how to use the shape sorter, and taught him to just sit and flip the pages of a book. “Hiya big banana!” Ron would always say. Ron was also first to say that Alex’s skill at the shape-sorter would one day turn into an affinity for letters and the alphabet, which it has. We know this affinity means something (is perhaps some key to how Alex may survive in the world after we’re gone?), but we’re still not sure what.

* * *

At Alex’s last IEP meeting, three weeks ago, his teacher and his therapists (still the full “spectrum”), Jill and I sat in the tiny chairs and talked about Alex’s future, which begins in September. In speech, they want next year’s still-unknown therapists to work on more listening and comprehension, more uttering of sentences that contain a subject, verb, and object, and using more attributions such as sizes, colors, and shapes. In math, his current teacher wants his future teacher to hit the times tables, more telling time and counting money. In OT, the goal is handwriting that actually hits the little blue lines.

“My little man,” his teacher says.

I was hoping Alex’s current school could make an exception and keep him another year. Better to be with the people who’ve taken you from stop-and-stares to the Pledge of Allegiance when funding dries up. And, regarding other possible schools, Jill immediately ignited at a phrase she heard at one middle school: “We have an expectation of college for our students,” the unit teacher told her. We had never heard anyone say anything like that about Alex before; it was like a strong new scent. But that school has no openings for September. Few schools do.

One that does, however, is Ron’s. His school is our first stop for a tour, where today he is the unit teacher.

I round a corner and there he is. He’s greyer (“More dignified,” I tell the man whose business with Alex was once all about bubbles), but otherwise it’s the same spark and firm handshake, the same “big banana!” brand of enthusiasm and professionalism. His school looks a lot like Alex’s current school: the same tiled walls and small-scale bathrooms, the same artwork of construction paper and marker and lurid finger-paint. Alex could fit in here, I think.

Ron presents his staff. I start from square one with people who’ve never met Alex, telling them all the clever cute stuff he does. How he tricked me out of the boys’ bedroom so he could get the cat off Ned’s bed. How he tricked Jill into taking her hand off a doorknob once, because he wanted to make a break for it. How he sometimes bolts, and catching him on the run inCentral Parkis like trying to catch a dragonfly. How he now says clearly, “I want cookies please!”

More similarities, this time among the students: some rocking, some stimming, wheelchairs parked in the halls. Classrooms sport Velcro schedules (“sweeping”; “work time”; “clean up”). Alex will recognize those, I think.

The classrooms are smaller than in Alex’s current school. In one, colored cloth covers the fluorescent overheads to cut down on distraction. In another, students use a computer to read and relate the life cycle of the butterfly. “Science class,” says Ron. Wow – science class!

The tone is quieter, the books thicker, and it seems to me students are expected to keep their noses closer to the grindstone. “We’d be happy to have him,” Ron says. Before we leave, he shows us a notebook with a checklist of jobs the older students here perform at a local golf course: pick up trash, clean tables, stock storerooms. A notebook of expectations.

Alex could fit in here.



Jeff Stimpson is the author of Alex: The Fathering of a Preemie and Alex the Boy: Episodes From a Family’s Life With Autism (both available on Amazon). He and Jill podcast about parenting a special-needs son at http://jillandjeff.podbean.com, and blog at AutismVox (blisstree.com/autismvox).

Copyright © Autism Asperger’s Digest. 2009. All Rights Reserved. Distribution via print means prohibited without written permission of publisher.

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