The Denver Autism Wheel


Posted on: February 4, 2012

I love the line in Ratatouille when the critic orders: “I’d like some nice, fresh perspective.” I’m looking back now on five years of knowing what to call the stims, the awkwardness, the gaps in understanding. Eleven years total in this process, but five years of talking to people (sometimes arguing with them; sometimes that just happened in my head), trying things out, working with Chris, banging my head some days. And then he became an adolescent…

Eustacia Cutler explained this stage brilliantly: autism + adolescence = hell. I can only imagine. Take everything you know about how your child communicates (or doesn’t) and then add in the confusion of physical changes in their bodies, added hormones and new smells, voice changes…yeesh: check, please.

But you can’t just pay and leave. This is only the beginning of the time when you can make the most difference for your kid. And, if you’re like me, you’re learning as you go. Damn it, Jim, I’m a mom, not a psychologist, sociologist, anthropologist, agony aunt, Sherlock Holmes, decoder-of-strange-explanations-for-irratic-behavior. And for goodness sake, he’s still my kid, who looks to me to make sense of the world. I remember being a tween: the world don’t make no sense, but it’s all TREMENDOUSLY DRAMATIC.

Back when we first got this whole living with the diagnosis of autism thing rolling, back before Karl and I knew how much power a parent’s voice carries, we sat in silent desperation in a parent/teacher conference and listened to the SpEd coordinator and Chris’ first grade teacher as they explained that it was normal for Chris to fall farther and farther behind his classmates. That’s what autistic kids do: they fall behind. That’s OK. “Your job is just to love him.” Those seven words have stuck in my throat for 5 years. Because “loving” your autistic child means so much more than hugs and driving him to and from school every weekday. Love means reading everything you can find, talking to specialists, pounding on the principal’s desk when he won’t listen, soliciting expert information, gathering human and print resources to provide the “free and appropriate public education” you never thought would be so difficult to secure when you saw that little bundle in the bassinet.

It also means you never give up. You do what you have to do because you’re the one who has to do it.

But there’s good news here. Chris is going into 6th grade next year. We’ve already started the transition process, and he’s met his new staff a couple of times. His para isn’t following him to middle school because she realizes “he has to make the transition and be successful in a new environment.” We have an education advocate. We have a support structure. We have teachers who listen and try and work and try some more. We have all this infrastructure around the guy. And now those words come back to me: “Your job is just to love him.” Yah, lady, and I do. Because now that we have the educational infrastructure in place, I can be there for him to talk about all those weird teenager things, try to help him make sense of the jungle of social/emotional changes his peers will find so much easier to navigate.

So here’s the nice, fresh perspective: get that stuff in place. Early intervention rocks. It helps lay the foundation for the next stage of development. Ask the questions, advocate, share, stress. And put down the next layer of support. Rinse, repeat. And trust that all that good prep work pays off. All the scaffolding will come away from the building as your kid gets a handle on the expectations, goals and habits he will need. The important thing is being there. And “just loving him” is never “just” loving him. Yet it is. Yes, it’s a lot of work, and there’s no immediate payoff or reward for a job well done. But each layer you put down is another layer of understanding, coping, learning and growth that he will take with him to his next stage of development.

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