A Once and Former Warrior Mom

There was a time when I equated advocacy with warrior-momness. I made sure it was written into Charlie's IEP that he was on a special diet free of this that and the other thing, and was at pains to distinguish "food intolerance" from "food allergy."

I had heard about the gluten-free casein-free diet as a "dietary intervention" for autism in June of 1999, just around the time Charlie was being diagnosed. I stopped at the health food store on the way home from my office and Charlie, and our household, was purged of anything wheat or dairy shortly thereafter. I bought this book and this book and this book (and spoke to both authors). Until about a year ago, I was the Food Police when bagels and pizza and cupcakes came anywhere near Charlie's orbit. Gradually we reintroduced wheat for Charlie, primarily because not letting him eat it isolated him from his classmates, when their mothers brought in treats and when we were at gatherings with families and friends. As of last summer, Charlie was no longer on "the diet."

And a funny thing happened that a friend and I like to call "forbidden fruit syndrome." After ten years on "the diet," Charlie has still preferred to eat the same as he did, with the occasional bite of baguette and brownie. He still prefers Asian food (sushi........) and his old staple, rice with some stir-fried protein and vegetables. And I may as well put in a permanent order to this Louisiana rice mill, as their "green crackers" (because the box, not the crackers, is green) are Charlie's ultimate comfort food. On the weekends when Jim and I order a pizza, Charlie's been saying "no thank you."

Once my efforts (Jim has always been more easy-going, to his endless credit) to control what went into Charlie extended to every aspect of his schooling, home therapy sessions, therapy sessions at a clinic, all the time.

I was mad at the world for what it'd given Charlie and I thought (unconsciously) that, if I could control everything around Charlie, he'd be all right. I was mad at the world when people stared or sentmean looks our way. I wished for a magic wand (or at least, a magic treatment), to make it all right. Winding myself into warrior-mom-mode, I felt I was doing all I could for Charlie.

I'm not so sure about that anymore. For Jim and me, doing the right thing by Charlie increasingly involves heavy-duty teamwork, involves dialoguing (over debating) about what Charlie needs and how he goes about it with an ever-growing cast of teachers, aides, therapists, the occasional administrator, the case manager, former therapists whose email addresses you can be sure I've saved, parents, self-advocates, my colleagues at work, my students studying to be teachers.I used to think I was the solitary mom on a mission. Now I work my way through every day, remind myself to listen and learn and play my part in thinking ahead to the future for Charlie and his three classmates and all the kids like him and them.

To that end, I worked my way carefully through the New Jersey Adults with Autism Task Force (NJAATF) survey. As noted in an article about the numerous autism bills passed in New Jersey in the past year or so, the NJAATF's report to the governor is due in June. I've heard too many stories of 20-somethings sitting at home because, after years of solid autism education, but no jobs, no housing, no nothing was there for them when they turned 21.

I understand why so much attention is focused on early intervention and getting treatments and therapies for younger children on the spectrum. But autism is lifelong and I think we need to refocus advocacy and educational efforts with this in mind. For one thing---something that seems to get forgotten----kids on the spectrum grow up into adolescents on the spectrum into adults on the spectrum.

I mean, at the rate Charlie is going---watching me so carefully as I made him rice and stir-fry yesterday evening---I'm thinking it won't be long before he learns to use the rice cooker. And then from there (if you can trust the New York Times) the possibilities are endless.

Just like those of a certain boy I know.

(Yes, Monday was good, with lots of good talking.)

Photo by quinn.anya.