Woody’s Story: On a Mission For Woody

February 06, 2011

FacebookTwitterPinterest

By Mary Brown

When Woody was diagnosed with autism at age 2, I went into a mad dash for services and interventions. I heard that some mythical window closes at age 5; the once-elastic brain becomes concrete, impenetrable. Age 5 passed, then 7, then 10. Woody is now 12, still non-verbal and nowhere near “recovered,” even though we threw the kitchen sink of therapies at him. Funny thing, that window is still ajar. And we’re still working on things, even though the pace has slowed to something more manageable. It’s not a sprint, it’s a marathon.

Most of the autism information, support and attention seems to go to the little kids, ages 3-5, but that’s mainly because there is now an unprecedented number of tweens and teens with autism. There is no manual for these kids yet. As the mom of a tween, I can see the landscape has changed.  The club feels smaller, the gaps seem wider, the isolation more, well, isolating. Yet his challenges persist, and the aging warrior mom does not withdraw from the fight!

Early intervention may be in our rear view mirror at this point, but we still have work to do. Biomedical interventions haven’t produced that “aha” miracle for Woody, but that doesn’t mean they haven’t helped. I stay current and keep moving forward. Program stale? Try a new MAPS doc, explore different supplements or tweak the diet to avoid stagnation or worse, giving up.

I had to accept at some point that Woody may never be verbal, may never lose that “moderate-to-severe” label. So what does the battle become when the old definition of victory might be out of reach?

For me, the battleground is now academic achievement. The school wants him to learn “life skills,” a euphemism for field trips to Target. But what if a real education could open some unforeseen door to future productivity and fulfillment? No matter what, all children deserve to learn how the world works, where we came from and what the great minds have written. This is what makes us human, what feeds our souls.

Some time ago I created a mission for my son: Woody will one day walk across a stage and accept a high school diploma that he earned, by meeting graduation requirements. Not a certificate of completion that he got for showing up for 18 years.

I say this a lot. I figure that saying it makes it more real and holds me accountable. I’ve already been told in plenty of IEP meetings that my goal is unrealistic and undoable. It surprises me that well intended, experienced educators still equate verbal ability with intelligence. I thank them for their opinion, and make sure that the IEP provides the supports Woody needs to prove them wrong.

Woody is plenty smart, he just uses unconventional means to show what he knows. He can’t talk, he can’t fill out a worksheet independently, he can’t always sit through a whole general ed class, even with his 1:1 aide beside him. So how does he keep abreast of his peers, doing age- and grade-appropriate work? He can point and type. Using a simple letterboard, Alphasmart and now an iPad, Woody is able to do the academic work of a typical 6th grader, despite his considerable challenges and severe communication deficits.

I latched onto the pointing/typing thing early on, first with Soma Mukhopadhyay and the Rapid Prompting Method, then later through Facilitated Communication. This has helped him keep up at grade level. It’s never too late to discover that our moderate/severe kids have been learning all along, and have just been waiting for a way to express their thoughts and knowledge.

So it’s a marathon, arduous and unimaginably long, but with moments of pure exhilaration. This is life with an older kid with autism, our normal. I’m still on a mission, albeit a different one than I thought I’d be on at this point. I am the guardian of my kid’s health, communication needs and, most importantly, his education. Who knows what’s possible?