Autism

Homemade Advocacy

by Kristina Chew

Published March 31, 2009 @ 12:10AM PT

My son Charlie is not, as I have noted, a reader and thus, like more than a few children, has quite confuted the inclinations of his parents; so is a girly girl born to a tomboy, as writer Helene Stapinski wrote in last Friday's New York Times. Consequently I took especial note when, last night, I found Charlie looking with deep interest at the cover of a catalogue for Different Roads to Learning, from whom we've purchased a number of items over the years for teaching him. The days have passed when Charlie did couple of sessions a week of ABA at the table in his room: He needs structure and schedules throughout his day as much as ever, but also needs much more to be up and about around the house, in the community.

Charlie's teacher does home visits on Tuesday and Thursday and Jim was lecturing, so today it was Charlie and me. He hadn't wanted any of my snack offerings (the fridge tends to be a bit bare on Monday afternoon as he and I typically go shopping later on Monday; my mom had left some paper-wrapped chicken in the freezer, but Charlie said no to it). We went on a walk on what started to be a gray-cloud and wild-wind day, and ended up being an afternoon of brightening sunshine with blue sky above the green-becoming grass. Then we went shopping and each carried in a heavy bag of groceries and had dinner, after which Charlie settled himself in his favorite spot on the living room carpet. And that was where I spied him, eyes fixed on the catalogue cover, which featured a drawing of a treasure chest full of flashcards, books for teaching, puzzles, peg boards, blocks, and the like.

Looking at it was like instant memory mix for me. Tracking down those items and sitting with Charlie at his little blue Little Tykes table or on the floor and cleaning everything up and putting them away into shelves and bins for the next therapist, the next day: Once those were the principle activities of my days. I've since met Julie Azuma, who started Different Roads to Learning, and from time to time found things we needed from the catalogue.

Some things we never got to, like materials for working on "Wh-" questions and conversation----I'll call those works in progress and to come. We actually bought few flashcards when Charlie was younger but cut out photos from books and magazines and catalogues and glued and laminated. I still remember sitting on the floor, cutting and gluing into the wee hours of the night, and alternately feeling astounded that I was doing these simple tasks with such passion, and ardently glad that I was. Making those cards, and laying three of them out at a time to teach Charlie language, was, in its own way, a kind of early, homemade, advocacy.

True, we weren't thinking we'd go too far changing any aspect of the world besides teaching Charlie what we might. But something in the spirit and dedication we devoted to making those cards and to teaching Charlie, word by word and (when he learned to talk a few years later), sound by sound, has remained with me, whenever I sit in an IEP meeting or when I've been able to make it to an IACC meeting; whenever I find myself at a press conference or conference or a statehouse, or just standing in the supermarket aisles with Charlie, quickly explaining to another customer why he takes so long at the sushi section.

It's been a long time since those nights of flashcard making, and Charlie always reminds me of what it's all about.

The catalogue had also evoked a significant memory in Charlie. I knelt beside him, just as I used to, and found the pages with the Actions flashcards, the counting bears, the peg puzzles, the Soundtracks game, that Charlie had once learned from. Then I realized that Charlie was saying "pegs" and flipped back to the cover where, sure enough, off to the right side, was the very peg board (big plastic pegs with a blue foam "board") that had been one of his first-ever toys. It's a toy that was long ago left behind (I think when we left St. Louis in 2000, when Charlie was four years old) and it seemed time to turn to Hot Wheels and CandyLand and such things.

Charlie looked for a few more minutes at the pictures in the catalogue, then left it on the floor. He'll be twelve in just about six weeks. It's become the time to put away the childish things.

And yet I never can forget, it all started with this one child.