Autism & Haircuts

What did you think when he walked in for his appointment?

Maybe you saw a tall boy with glasses and thought nothing about it at all.

Then he rubbed his hands together fast, like he’s warming up at a campfire.

Or he hopped from one foot to the other, trying to regulate his nervous system.

And you wondered.

If I’d been with him, I would have attempted to explain. I would have whispered autism when he wasn’t looking.

I’m not with him anymore. I can’t explain. I no longer drive him to appointments. I don’t stand in the middle of world and boy, boy and world.

You see, last year we dropped him off at a college program. We set up his room and made his bed and pulled the blankets tight. Then we walked to the car. He turned and went back inside the building.

It was perhaps one of the hardest moments of my life.

For nineteen years I opened my eyes in the dusky dawn and listened for him—fussy infant, mischievous toddler, restless teenager. 

For nineteen years I have protected him, spoke for him, introduced him.

Boy to world, world to boy. 

Did you hear it in his voice? The way he talks?

Did he ask you how old you are? He does that sometimes. He can be very, uh, direct. 

The thing is, there is so much behind the voice, the glasses, the hopping, the campfire.

There is the smallest flame. 

I can’t help but think, with enough light and breath and air, his flame could become fire. In his very own way, he might set the world alight.

This boy Jack.

My son.

If you sit very still, he will reveal himself.

He will tell you the last time he had a taco. He will explain he is half Italian. He will ask how long you’ve been cutting hair.

Did he clean his glasses a bunch of times? Did he check his watch a lot? 

I am scared to die.

I can’t talk about it. I don’t know who to tell.

I mean, it’s not a topic of conversation for cocktail parties.

You can’t exactly announce it while you balance a plate full of cheese in your hand. 

I don’t know what will happen to him.

For as long as I can remember, I wanted a crystal ball to see into the future.

I wanted to know what he’d be like when he was twenty, thirty, and beyond.

Lately, the crystal ball is more like a snow globe. It is blurry. There is a blank whiteness. 

For nineteen years, we have done everything we could think of to make this boy independent.

We started with teaching him how to zip his jacket. Loading a cup into the dishwasher. Walking down the driveway to get the mail.

Answering the phone.

Using the stove.

Was is enough?

I’ll never know.

This is the push-pull of an Autism Mama’s heart.

He decided he needed a haircut.

He called the barbershop. 

He made an appointment. 

He did all of this, four hundred miles away from me.

Still, I can’t relax into the triumph. I wait, perched on the edge of the proverbial cliff, waiting for the other shoe to drop into the abyss.

Autism smiles at you.

But it doesn’t show its teeth. 

Did he fidget when you tied the cape around his shoulders?

For years he couldn’t tolerate getting his hair cut.

He screamed as soon as we pulled into the parking lot.

He squirmed and shrieked when they used the clippers. 

Slowly, we eased him into it. We promised lollipops. We played music. 

Nothing came easily. It was hours upon hours of work.

I guess I want to know how you see him.

I hope—for one single moment—you see him as I do.

Earnest, brave, unsure, interesting.

My son.

He has autism.

This is the soundtrack to my life.

This isn’t a sad story. 

This is our story.

Our story of a family arranging and rearranging and arranging once more.

The story of the foreverness that is an autism diagnosis.

It is the story our radical grace, our reckless mercy, our tender, tender resilience.  

The story of life, death, and learning to come to terms mortality.

Someday, I will die. There is simply no way to cheat it.

So today, I will sink a little more into the triumph of baby steps and a fresh new haircut. 

He doesn’t need me to explain. 

He doesn’t need anyone to explain.

This boy Jack.

How he chases wonder.

He enjoyed meeting you.