In high school I played the flute for both the marching band and the school orchestra, and sometimes, we traveled to perform at musicals. I think we got paid something like $20 a show, which I promptly squirreled away for my next pair of parachute pants, because I wore those nylon trousers like a boss when I was a teenager.
One year I played in the pit band for The King and I at a nearby school, and for three weeks, I went to the rehearsals and watched the actors run their lines and dance and sing.
In this particular production, there was a part where the a female character was held captive by guards. The actress faced the audience while the guards faced the back of the stage, and they held her arms high in the air above her head.
On opening night, something with this scene went awry. As the actress faced all of us with her hands in the air, her costume slipped down on one side and exposed her. Realizing she was partly naked she struggled harder against the guards, but, oblivious to the situation and maybe thinking she was just really into her role, they gripped her wrists even tighter against her fight. The look on her face was unforgettable.
The audience gaped. We looked at each other, horrified, but no one really knew what to do. When the scene ended the girl bolted off the stage with her arms clasped to her chest.
I haven’t thought about that memory in years, but last week I saw a bunch of articles about The King and I on Broadway. They were in my Facebook newsfeed and people posted them to my timeline and e-mailed me the link.
Finally, I clicked to read about what happened. From what I gathered, a family took their son with autism to a matinee of the show, and during an intense scene, the kiddo became agitated and began to make noise. Apparently several people in the audience shushed him and asked for quiet. The next day one of the actors, Kelvin Moon Loh, posted a beautiful, eloquent response in support of the family and autism and everyone’s right to enjoy live theater on their own terms.
It was yet another example of autism-meets-world-but-the-world-is-not-ready. And although I have read and heard my fair share of these stories lately, I could not bring myself to feel outraged.
The way I see it, if I decided to rant and rave every time I read an article or saw a news report about autism, well, by lunchtime I wouldn’t have enough energy to make a sandwich. And if I’ve learned anything since my days of parachute pants, it’s that outrage is exhausting.
Autism can be noisy and disruptive and uncomfortable and awkward and people don’t always like it. I often find it to be noisy and disruptive and uncomfortable and awkward and I don’t always like it, which may not seem like a big deal except my son happens to have it.
But I do like my son. I adore him, in fact. I think he is interesting and funny and smart and sometimes, complicated and mysterious and annoying.
I like to imagine Jack’s spectrum disorder is a prism, with a million different colors and lights and angles. In the theater that afternoon, there were probably many, many points of view.
He was trying, trying, trying not to make any noise but the people on the stage were moving so fast and they looked so mad and it was very, very scary.
She thought it was going to be a good day; he had eaten his breakfast without a tantrum and climbed in the car without a fuss and smiled when big velvet curtains opened for the first time.
He saved up for six months to buy good seats so he could surprise his wife for their anniversary.
He wanted to help but he was trapped in costume under the bright lights.
His stomach clenches when he hears a child crying because it reminds him of growing up with his older brother; a nonverbal enigma of a boy who later went to live in a group home.
She didn’t know what to do.
He didn’t know what to do.
From the time our son Jack was an infant, we’ve made a point to take him places. We’ve taken him to the latest Disney movies and walked through the mall on cold winter afternoons. We’ve brought him to baseball games and for dinner at our favorite Mexican place in town, and on vacation in the Caribbean.
And we’ve had to leave the movies early with him and apologized to the firemen in the mall when he pulled the alarm. We’ve had to race out of the stadium when the mascot showed up, with Jack’s face buried in our legs while he screamed.
We apologized when he shouted that his enchilada tasted like crap, and we’ve paid for other people’s dinner when he threw the salt shakers because he was terrified they had worms in them. We’ve forsaken the best seats in the theater so we could sit in the back and let him jump and flap and stim without bothering other people.
We like to call this spreading autism awareness.
I basically spend a lot of time sandwiched in between Jack and the world, explaining one to the other, so the world doesn’t think he’s a rude jerk-head and he doesn’t think the world is unyielding, unkind, and blisteringly cold.
This is not easy. In fact, it is the very opposite of easy. But still, we won’t stay home. We won’t hide autism like some deep, dark secret.
Every day I fight to make room for Jack in our world, and room for our world inside of Jack. Although lately, it feels like less of a fight, and more like erosion. Over time, with enough opportunity, I can only hope two will rub up against each other until they are as smooth as glass, and they can fit together comfortably.
I can’t do this from my basement. I can’t do this from my own backyard, or our playroom, or sitting at the kitchen counter night after night. Jack and the wide, open world have to see each other, and smell each other, and taste and hear and know each other.
I definitely can’t do this if I’m outraged, because when I’m peeved and indignant and resentful, the clear crystal prism clouds up, and I can’t see all of the sides. Jack needs me to see the sides.
He needs me to remember there will be many stepping stones to pave the way. Sometimes they will be sharp and jagged, other times as smooth as glass, but one day, I know they will sit side-by-side in theaters and restaurants and bowling alleys and airplanes.
In the meantime, this is how I will continue to spread my own autism awareness.
I will keep taking Jack places even though it can be uncomfortable and awkward and exhausting.
I will promise him there are no worms in the salt shaker and encourage him to keep his hands in his pockets when we pass the tempting red fire alarm.
If he kicks the seat in the theater, I will tell him to stop. If he is too loud, I will ask him to speak quieter. I will remind him to say please and thank you.
And when I see someone else is struggling with needs that are special, I will reach out a hand and gently touch a shoulder. I will offer a kind word, but not advice.
I will open the door or offer to carry a bag or play peek-a-boo with the toddler in overalls who is standing by uncertainly while his or her mother tries to stop the moving tantrum train.
And if I find myself unable to help either the world or Jack, I will pause for a moment and think about a prism.
I will remember it is fragile. Some parts are smooth and some parts are sharp, and slick, and slippery.
I will imagine all the sides; the heartbreak and the longing and the dread, the beauty and the mystery and the love
I will remember that whenever I try to hold autism tighter and tighter by the wrists in a faceless standoff, something naked and raw and real and tender is always left unguarded, just like the first time I ever saw The King and I.