Capturing Autism

“Mommy, will Insideschools miss you after you say a big goodbye?”

Sadly, Brooks’s question arose because last week, I left my position here as Web Developer. While I will continue to write this blog for as long as InsidesSCOOP will have me, my technical career is moving on to The Paley Center.

I have to admit that as excited as I am to begin my new professional opportunity, I am also truly saddened to leave Advocates For Children (AFC), Insideschools’ parent organization. I will sorely miss this small but feisty group of really smart and compassionate folks, many of them special education parents themselves, who work so hard for the interests of all public school children with educational challenges. It is no exaggeration to say that AFC has fundamentally changed the kind of special education parent I am.

When I started here two years ago, I was a tremendously grateful autism mom: my little boy’s life had been saved by publicly-funded programs. New York State’s Early Intervention Services (EI) and New York City’s Committee on Preschool Special Education (CPSE) had given Brooks 20 to 30 hours a week of intensive therapies that my husband and I would never have been able to afford privately. And Brooks had just secured a coveted kindergarten spot in the much-admired public school ASD (Autism Spectrum Disorder) Nest program.

Now, two years later, my son’s integrated program at P.S. 178 has more than lived up to its promise. Everyone — teachers, therapists, and students — understands on some level that Brooks is different, but they also completely and totally accept him. This finely-tuned inclusion environment not only benefits my son, but also his whole class and his whole school, since they are all learning first-hand to accept, value and, most importantly, befriend kids who aren’t exactly like them. To witness a New York City public school prioritize teaching kindergartners the value of diversity, right up there alongside academics, is nothing less than breathtaking.

I am very grateful, but I am learning to temper that gratitude with a new resolve to make respectful and fair demands from the DOE — not only for my son, but for all New York City public school children with developmental delays. I am beginning to feel angry that my old neighborhood school had no place for Brooks, and that we had to move 200 blocks uptown to send him to kindergarten. In our case, this was not a hardship, but what if Brooks had siblings happily attending our local school? As many families do! Now, when I watch videos on YouTube of charter school classrooms that clearly could not accommodate Brooks or any other sensory-challenged child, I no longer look at the glass half-full and rationalize that they are helping kids in bad neighborhoods make it to college, which I’m certain they are. Instead, I take offense. These are public schools, and they are leaving Brooks and all of his peers out of the equation.

At least once a month, I participate in parent support groups where we swap stories about turning our lives inside out to educate our kids with special needs. I think I can speak on all our behalves when I say that we’re tired. By law, our children may be entitled to a free and appropriate public education, but in practice, they face consistent discrimination.

Sometimes I ask myself where we’d be if Brooks had not gotten any public services. What if his disturbing habit of banging his head hard into the back of his high chair when he was eighteen-months-old hadn’t been addressed and reversed? Although I shudder to think of it, our sweet and loving little boy whom teachers often describe as a pleasure to have in their classrooms could easily have become a non-verbal kindergartner with violent tendencies. Notwithstanding the emotional pain to our family, it would have cost New York State considerably more than they’re spending now to support him over his “what if” scenario lifetime.

As I write this post, I overhear Brooks giggle as he sips hot chocolate with my husband after a snowball fight outing in the park. As he negotiates extra time on the Wii with his usual flair: “Daddy, how about I play just one game of bowling and then I practice piano?” and then follows up with his irresistible “And can you watch me?” I am comforted by his consistent desire for social interaction. He wants to connect — he has always wanted to connect — even though he hasn’t yet figured out exactly how it all works. We’re watching, Brooks. Me and Daddy, and your family and friends who just celebrated your seventh birthday, and all your classmates and teachers and therapists at school. We’re all watching. Because it’s what you deserve, and because it’s what you’re entitled to.

This post was originally published on Inisdeschools.org.