Practically Perfect in Every Way

Here’s a story about an autism-friendly staging of Broadway’s Mary Poppins. Anyone who knows me knows that I’m a huge fan of all things Disney (with the possible exception of their ‘tween stuff. Miley Cyrus? Really?). So it came as no surprise that the Disney company would cooperate so fully with the folks at the Theatre Development Fund. When they learned that TDF had bought out the house for the Sunday matinee, they were more than happy to make adaptations to the show so that audience members with autism would have as positive an experience as possible: No strobe lights? Check. Quiet down the sound of the tap-dancing? You got it. Give ample warning before loud noises or big surprises? No problem. The entire cast and crew added extra hours of rehearsal so they could get this one showing just right. I can’t tell you how good this makes me feel, even though we live 965 miles from the New Amsterdam Theatre.

Reading this piece reminded me of the “fun” we had when our oldest was a baby. The pastor of our church would often tell a joke or have a dry, witty remark at the opening of Mass–something to engage the congregation and loosen them up a bit. The problem was, our son was very sensitive to sudden noises, especially outbursts of laughter or applause. (He still is.) So every time the congregation would laugh or clap, he would let out a blood-curdling scream and  begin to cry as if in pain. Katie or I would have to take him out into the lobby until he calmed down. Then we’d bring him back in, just in time for the homily–which often involved audience participation. And then there were the announcements at the end, with the occasional shout-out to some super-involved parishioner or committee–followed by applause. So if all three events happened at the same Mass, our son ended up spending most of the time in the lobby, with Katie and me alternating as his chaperone.

All that was back when we had no clue that he was on the autism spectrum. Heck, we didn’t even know there was a spectrum! We thought he was just sensitive. (He was.) We thought he was just high strung. (He was.) We thought he’d grow out of it eventually. (He hasn’t–at least not completely.) We never thought it was because his brain was wired differently. We never saw it as a warning sign of other challenges and developmental delays down the road. It took many more years before we put the pieces together.

But now we know. Now we get why he reacted that way at Mass. We also get why it took him five days of a six-day beach vacation to muster the courage to crawl off the beach towel and onto the gritty sand. We get why he spent a whole spring and summer afraid to walk on the pointy grass blades of our front lawn. We get why the geckoes that loved to dash around our front porch in St. Augustine filled him with terror and kept him from going outside unless one of us carried him. All these sensory assaults were just too much.

So now we know. And that knowledge, while unsettling in some ways, is comforting in other ways. We have a label. We have an explanation. And that means we can learn how to help him. It means, also, that he doesn’t have to go through life afraid of all the things that used to startle him so deeply. Because he can name his challenges, he has a greater degree of control over them. He can learn how to adapt.

Now twelve years old, our son knows who he is, and that knowledge has a good side and a not-so-good side. On the not-so-good side, he is having to deal with a sense of otherness about himself. He knows that he’s got more challenges than most of his peers, and it can get him down. This is not uncommon for folks on the spectrum–the incidence of depression is much higher among them than in the general population.

But on the good side, he has developed a real compassion for other kids on the spectrum, especially those who are more profoundly affected than he is. He actively seeks them out at school and tries to befriend them. He is even looking into the possibility of volunteering as an after-school aid to work with these kids. He can also be very tender-hearted toward his brothers, who are more autistic than he is.

I’m proud of the way my boy has accepted his diagnosis. We’ve still got some work to do in the self-worth department, and there are still social and academic challenges he must overcome. But I love the way he’s looking outside of himself and trying to help other kids. Who knows? He may end up as a counselor or mentor. He may end up  bringing masterpieces like Mary Poppins to kids who aren’t fortunate enough to live in New York City. He may even end up developing entirely new autism-friendly experiences for the next generation–something that’s practically perfect in every way.

1 thought on “Practically Perfect in Every Way

  1. Pingback: Why I Walk « autismblues

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