This Autism Life

For the last twelve years, we’ve had a piece of paper taped to the bathroom wall.

It’s a visual schedule. It lists out all the things my son Jack needed to do in the morning—brush his teeth, eat breakfast, get on the bus.

We made it when he started kindergarten. I remember sitting at my computer after everyone had gone to bed, searching online for images. Toothbrush, waffles, yellow school bus.

It’s a little tattered now. The top corner is curled over, and the pictures are faded. 

We took it down when we repainted the mint green walls. Then carefully, he taped it back again. 

It’s been a part of our landscape for so long, I hardly notice it anymore.

But every now again I catch it out of the corner of my eye. I smile, remembering the way he traced his pudgy finger around it every morning.

Jack is eighteen now. He doesn’t live here anymore. He lives in a residential space with forty-four other students.

He gets up on his own. He brushes his teeth in the shared bathroom and goes downstairs for breakfast. 

He outgrew the schedule. 

I never once, in all my dreams, imagined it.

For thousands of mornings, I guided him toward this paper. I reminded him first teeth, then waffles. I helped him pull on his backpack and walked him down to the bus.

In many ways, my life revolved around him.

For eighteen years, I was the appointment-maker, therapy-seeker, schedule-keeper, when all I really wanted was to be the mother. 

This wasn’t a choice I made. It is simply life alongside a diagnosed child.

Jack was home for two weeks over Christmas break. Watching him was like watching him wear a sweater that doesn’t fit. This house, this town, this life, they all shrunk.

He doesn’t belong here anymore. I mean this in the very best way.

If you had told me that one day, my son would no longer inhabit every inch of our home—that he would outgrow the trips to the grocery store, organizing the cabinets, planning the menu board, watching game shows after dinner—well, I truly would have thought you were crazy.

But he did. 

It wasn’t all at once. It hardly happened overnight.

After all, autism is a game of small steps—inches rather than miles.

When you are in the trenches of behaviors and schedules and obsessions, you don’t think it will ever change.

I know I didn’t.

I thought okay, this is our autism life and it’s the hand we’ve been dealt, and we’ll make the best of it.

But slowly—oh so slowly, like the erosion of jagged cliff—things shifted. The edges became smoother. 

He did it his way, in his own time.

He doesn’t belong here anymore.

Yet I can’t help but wonder where he’ll eventually land. 

What’s next?

My mind turns that question over like a copper penny in my hand. 

The work is never done.

This autism life.

We believe in second chances, new beginnings, and a fierce kind of love. 

We spend so much time wishing for a crystal ball for a glimpse of the future. 

What we have, at best, is a snow globe. All we can do is wait and see where the lovely flakes land in all their glittering glory.

We surrender to a life we didn’t ask for, yet we love all the same.

It’s worth it. 

He is worth it.

Jack-a-boo.

My son. 

My sun.

This is his time.

I can’t wait to see what he does next.

I should probably take the paper schedule down, but I’m not ready. 

Beige. That’s the color of the walls now. I miss the green.