What was I thinking?
When it comes to my 17-year old son Jack and his autism, I ask myself this question a lot.
I asked it when we let him paddleboard across the lake one summer.
And the year we pulled him from public school.
Whenever we pull up to a bowling alley, a crowded restaurant with a long wait, and any kind of holiday party.
What was I thinking?
Then there was the time my husband insisted he climb on the roof and help his brothers hang Christmas lights.
(In that instance I was really asking what I was thinking, marrying this lunatic.)
And now, a 3-week program—overnight, in another state, for the rest of July.
He doesn’t want to go.
He tells me every day.
Last week, he had a meltdown. He hasn’t had one in at least a year.
But after a long day of pacing and scripting and worrying, he sank to the floor and started to hit his head.
He screamed he couldn’t do it, he just couldn’t go away it’s too hard it’s too much he will miss us he can’t go.
I didn’t know what to do.
I sat next to him.
I leaned in close but not too close.
I let him cry.
I know what you might be thinking, gentle reader.
Why send him?
Why not wait until next year?
I wish you knew how many times I’ve turned these questions over in my mind, like a copper penny in the palm of my hand.
I don’t have a year. That’s the problem.
You see, an Autism Mama is always racing against the clock. You might even say time is our greatest enemy.
He is doing so well lately. That’s the thing.
He’s held a job for two years, and he has very few outbursts now. This past spring, for the very first time, he sat through an entire baseball game and watched his brother play.
It would be easy to stop here.
It would be easy to say, hey, this is enough.
Yet when it comes to this boy and his autism and all he might do, I will never say it is enough.
Because like a two-sided coin, each step of progress has another story.
Yes, he’s held a job. But it also triggers his crushing anxiety and he’s up by 5:30 every workday pacing and worrying about being late for his afternoon shift.
The outbursts, thankfully, are much fewer. Yet they are very, very intense now. And at six-feet, four-inches tall, he is a little harder to manage.
And he did great at the game. He cheered for his brother and he kept track of the innings and only asked if we could get Chipotle a few times.
At the same time, he stood in everyone’s way and talked incessantly about Britney Spears. And the Chipotle thing? It was more like a thousand times.
Autism gets its sticky little fingers all over the good stuff. It leaves a bunch of smudges. This is what I am trying to say here.
Tucked inside the triumphs are opportunities for more growth, and progress.
I have to wonder, though. Maybe it will always be this way. Maybe there isn’t enough emotional Windex or summer programs to clear off the fingerprints.
Autism is not his fault. This is something I remind myself daily—sometimes hourly.
He didn’t ask for it.
He didn’t ask for a brain that insists on schedule and routine.
He didn’t ask for a body that lacks regulation.
He didn’t ask for anxiety.
He can make me laugh and cry in the exact same moment.
I don’t always know what to do.
I only know how to try.
I believe he will live a life full of wonder, and joy, and discovery. But it won’t come easily for him. This is where the work is, and there are no shortcuts.
He is on his own hero’s journey—one that is full of small steps forward, tiny setbacks, and a wildly brave heart.
For me. I never fell. Off the board. Not even once.
I will miss him the way a dark night misses the sunrise.
T minus six days.