Stopping by the blog on an anniversary evening
ix years ago today we got the results back from our son’s special education evaluation: He was autistic. That part of our parental road now stretches for more than half his almost 11 years. We’ve known longer than we didn’t know, in other words.
Measured that way, I keep thinking this should be a tipping point, where we start to gain ground on understanding and coping with the pervasive ways autism affects our whole family. That we might catch up to it, get our arms around it. “Aha!” we’d chortle, pumping our fists at the bottom right of the slope. “Now we’ve figured it out.”
But we haven’t. As a developmental disability, Owen’s autism actually appears more pronounced the longer we live with it. He lags his peers in age cognitively, behaviorally, socially and emotionally. Inexorably, that gap widens as they simply learn and grow and gain faster and more easily.
We know he’s doing the best he can, try to avoid comparisons, focus on his own rate of progress and victories when they occur. Still, it can be agony to witness, especially when his sister provides an in-house barometer of typical child development. The schoolwork and birthday party invitations she brings home from first grade far outpace Owen’s at fourth grade. Six years in, rather than accelerating past the tipping point, we’re still scaling what feels like an infinite learning curve.
Perhaps that realization — and accepting it — is the real tipping point, though not the one I wanted when I conceived this post. I wanted the uphill trudge to become a downhill coast.
Constantly climbing does mean always ascending, however. It forces you to stop, now and then, and catch your breath. When I do, I remember that the best views are usually from high up.
When they come, those views often have other people in them. Teachers and fellow students at Owen’s school, like the classmate who high-fived him at the school concert last night, and the other one who cued him to start drumming on their class piece. Family and friends, like those who enabled us to not only see that concert but squeeze in a brief dinner to ourselves. Other autism parents, like the complete stranger who hugged me in the lobby of a doctor’s office when I lost it after a particularly tough day recently. Mike, of course, the best climbing partner I could ask for as we try to navigate a journey we never planned to a moving target destination with only the sketchiest of maps.
We cherish those views, bright in memory, even more vivid in imagination, as our ascent continues. As Robert Frost wrote, we have promises to keep – to a boy who’s doing his best to manage a neurotypical world he never asked for, either.
And miles to go before we sleep.
Add miles to go before we sleep.