Autism Awareness and The Keeper of the List

Today is Autism Awareness Day. Can I tell you a story about being an autism dad?

It happened four years ago. My son Jack, who is autistic and doesn’t speak, was twelve at the time, and his neurotypical brothers were nine and six. The three of them share a bedroom, but Jack was going through a rough patch. He was having huge meltdowns every night. The panicked screaming would go on for hours. We tried everything, but we couldn’t figure out what to do. After weeks of this, the whole family was worn down.

There was only one thing that would ever make the screaming stop: we had to recite a list of his favorite movies in the order in which they appeared on his iTunes library. It went something like this.

“Shhh… One, Good Dinosaur. Two, Dragon One. Three, Dragon Two. Four, Inside Out,” etc. I think it went up to fourteen. My oldest daughter had discovered this remedy one night, and it worked like pure magic. But after thousands recitations (you think I’m exaggerating, don’t you…), the cure had become the new addiction. He became dependent on the list. It would calm him for ten seconds, and then he would start in again with the crying.

What was wrong? We didn’t know. He couldn’t tell us. That’s the hardest part of parenting a child with severe communication difficulties. When he’s hurting like that, or when he’s so scared his teeth literally chatter, we have no idea how to make it better.

So there we were… lying next to him in the wee hours, repeating the list again and again, hoping that this time, when we got to fourteen, we’d get twenty seconds of quiet. And maybe twenty-five seconds next time.

But remember, he was sharing a room with his brothers, too. They were going to school every morning with messy hair and bloodshot eyes. They were more wrung out than we were.

One night, when it was becoming clear that this spell wasn’t going to break anytime soon, we drug Sam and Nathan’s bedding across the house to their sister’s room. Sam, the nine year old, was furious. And that’s a big deal, because Sam never gets mad. He might be the most compliant, good-natured kid I’ve ever met.

“Buddy, you are so tired,” I told him. “You have to sleep.”

His defiance came in a quivering voice, “What if Jack needs me?”

You see, friend, in the wee hours, Sam had become the keeper of the list. The whisperer of peace: “One, Good Dinosaur… Two, Dragon One… Three, Dragon Two…” How many hours he did this, I’ll never know.

So I spread out his blanket on the floor, said goodnight, and closed his sister’s door.

A few minutes later, it happened: the thing we’ll never forget.

My daughter’s door opened, and there was Sam, standing with his pillow under his arm, and his blanket on his shoulder. He was glaring at me with huge tears in his eyes. His chin trembled violently. Then, he proceeded to march all the way across the room, right in front of the television. His eyes never left mine until until he rounded the corner and disappeared back into his bedroom, where his big brother was still crying.

* * *

Autism means many things to many families. To ours, it’s meant banding together in surprising ways. It’s meant digging deep to find connection. It’s meant figuring out together what will make Jack laugh, or what will help him relax and go to sleep. Autism means sometimes dragging your bedding across the house.

Together, we have learned how to speak a new language, not based on grammar and syntax, but on grins and silly dance moves.

Our story is at once heavy and beautiful. It might always be that way, and I’m okay with that. I used to lament Jack’s condition. And I’ll be honest, some days, I still struggle.

But today, I look at my lanky, whiskered sixteen year old who can’t speak but occasionally sends a text message, and I see all the beauty he has brought out of us. I see all the joy he pours back in. He’s a beautiful boy, And I cannot tell you how grateful I am for him. I’m grateful for his brothers and sisters, too, each of whom understands empathy at a far deeper level than I ever had to as a kid.

* * *

I took a long walk with Sam the next morning. We didn’t talk much about rules or punishments. There was no need for any of that. Mostly, we talked about responsibility and rest. Because it doesn’t matter who we’re trying to love, or what diagnosis they might have, love requires effort. And if we’re loving for the long haul, we have to find refreshment for our souls, even as we pursue the same thing for our siblings.

In the end, that’s what autism awareness is really about for us: learning what it means to love our brothers, even as we learn to love ourselves.

“Sam,” I told him that morning, “I’ve never been so proud of your disobedience.”

It’s still true.

______________________

Photo from last summer at the Oregon coast. My shaggy boys from left to right: Nathan (now 10), Sam (13), and Jack (16). I love these young men.