The Things We Carry

Over the past fifteen years, I’ve gotten into some pretty awkward situations with my son Jack.

He has asked women if they were pregnant when they weren’t, and suggested a man in Rite-Aid pick better pants.

He has told his teacher her skirt was ugly, and asked the cashier if her mother was alive.

You see, Jack has autism.

He is honest, and earnest, and straightforward.

In other words, he lacks any kind of filter whatsoever.

He also struggles with cognitive flexibility, has very little working memory, and crushing anxiety.

He cannot whisper.

Have you ever tried to teach a person to whisper? To bring their voice down several octaves until it is soft and airy and light?

Would I change it?

This is the great subtext of my life.

Would I change his autism?

Yes.

Maybe.

No. I don’t know.

I mean, changing autism would certainly change the boy.

Who would he be without it?

Maybe he would be a teenager behind the wheel of a car, scaring us with the way he takes the turns a little too fast. 

Or captain of the football team, or a math wizard, or even a brooding budding poet.

But he wouldn’t be Jack.

It’s impossible to answer. That’s what I am trying to say.

There was a time when I would have said yes, absolutely. No question. Take it away.

Take away the obsessiveness and the language delay and the tantrums.

Instead of the little boy reeling around the room in a rage, or tracing the outline of the tile with his fingertips, or running through the parking lot, give me a child who likes baseball.

Am I proud of the way I once felt? Well, no. But it is the truth. And this I cannot change. 

Truth and shame are just a few of the things I carry. 

The thing is, when he was little and he was screaming and throwing himself on the floor, sometimes he’d stop for a split second, and look up at me.

When he did this, when he looked at me—a brittle shell of a mother who was trying to hold herself together—it felt like he was asking a question.

How far will you go for me?

I went far. I went farther than I ever imagined I could.

I cradled his head in the space above my collarbone and I stroked his hair and I wiped our damp tears.

I held his fingertips in mine to stop the tracing.

I ran. Oh, how I ran.

I ran down stairs and through parking lots and across the lawn.

I ran like my life depended on it, because it did.

Over time, I guess I got used to autism. I made tentative peace. Slowly, it became the tympani of my background—the silent drum to which I marched forward each day.

In fifteen years, you can really get to know a person.

I know he might eat applesauce but he won’t touch yogurt. He doesn’t care for soup.

He is a brother.

A grandson.

A cousin, a nephew, a student.

He is a hero. 

I mean, he’s not the kind of hero who saves lives or rescues kittens or puts out fires. I don’t think he can preform CPR, and he’ll probably never fight in a war.

He’s not that kind of hero.

He is the kind who gets up every day, and takes a hot shower, and gets dressed.

Then he goes back into the bathroom and he fills a paper cup with water and he swallows two white pills. 

He toasts waffles, and he waits for the bus.

Except it’s not a bus. It’s a minivan with the words Safe Wheels printed on the door.

Every day, I pretend he doesn’t know the difference between a bus and the minivan.

He knows the difference.

He gets on it anyway.

He does this, because he has no other choice. 

Every day, he does thousands of things that go against the very grain of who he is.

He is my son.

Have you ever felt different from every single person around you?

He does.

My son does.

Upon my shoulders, I carry pride, fear, delight, and hope.

Every morning, he wakes up, and he does it all again.

The waffles, the medicine, the minivan.

He is making the best of the life he was given.

He didn’t ask for autism.

He didn’t ask for a diagnosis.

He didn’t ask to be different.

I struggle to remember this. 

But I am trying. I try. 

I try to remember that when I am swimming against the spectrum tide, this boy of mine is gasping for breath beneath the waves.

Some of my most important life lessons have come from him.

Sure, patience and resilience and all of that. 

I can run faster than I imagined. 

I can do more than I thought.

And so can he.

I can’t take it away. I can’t, no matter how much he wants it or I want it. Autism is forever.

The thing is, we need people like my son Jack—people who dance to their own silent beat, so collectively we may learn a different kind of music.

We need people to stretch us beyond ourselves. 

I guess the real question isn’t if we should take away autism, or removing a diagnosis.

 The real question is, how far will you go for him?