This Autism Mama

Hi. 

My name is Carrie.

I have five kids. My second son, Jack, is diagnosed with autism. He is seventeen. 

Jack has been away for almost a week now, at a summer program specifically geared toward those who learn differently.

He’s staying in a dorm, eating in a cafeteria, and taking classes in something called Social Pragmatics. 

Social pragmatics essentially refers to how we use language to connect with one another. 

Taking turns in a conversation, using suitable facial expressions, gesturing, standing an appropriate distance while talking. 

He didn’t want to go. 

He told me this perhaps eleventy million times a day.

He told me social pragmatics are the stupidest things ever in this world. 

He told me he couldn’t do it.

But he’s there. He’s doing it. 

The house is not the same without him.

Not only because it’s quieter—although it is, because for a person who doesn’t like to talk, my son Jack makes an enormous amount of noise.

Stomping down the stairs at dawn. 

Slamming the cabinet doors.

Running the faucet at full blast. 

Rummaging through the baking pans. 

But it’s more than the noise.

He manages the shopping list and makes a note whenever we’re out of milk or eggs or bread or ice cream.

This boy of mine likes his ice cream.

He organizes dinner. He sets out the dishes and watches the clock until everyone is gathered around the table.

For the past six nights, he’s called each one of us. He calls his brothers. He talks to his father. 

Hearing his voice, I wonder.

Does he know?

Does he know we did this because it feels like we are racing against the clock as his senior year approaches and we hoped he could make a friend—one single friend?

Does he understand how we sit here—a father, mother, three brothers, one sister—our hearts bursting with pride for him?

Or does he feel like we just shipped him off?

Autism takes up a lot of space in my mind. 

I never how much, until this week. 

It’s as though mentally, I am always balanced atop the edge of a cliff—watching, waiting, listening. 

I rush through errands because I can’t leave him home for longer than an hour. 

I sit on the bleachers, watching my dark-haired son pitch his best game, while Jack paces and jumps along the perimeter of the field, knowing I am on borrowed time.

My shoulders are often tense. 

I carry the smallest pit in my stomach.

I am never present in the moment. My brain races constantly, trying to decide if I should make him stay through another inning, if I can squeeze in another stop to get stamps.

I live in autism’s realm—the spectrum timeline of anxiety and routine.

It colors everything, is what I am trying to say.

It’s not necessarily a bad thing. It simply is. 

I never expected this.

Yet here I am. 

At the same time—because there is always, always, something I am thinking/feeling/hoping/knowing at the same time—he brings so much to our family. 

I am quicker to describe the diagnosis before the boy.

I describe his rigidity, the way he jumps, how he overcome with anxiety. 

Lost in the spectrum translation is the humanity of a boy named Jack—his thoughtful nature, his rare smile, his incandescent bravery, his delight in dinner around the table.

Because of him, we gather.

I am an Autism Mama.

It is the hardest work I have ever known.

Sometimes people ask me where I find my strength.

If they only knew.

If they could only see inside my head and my heart, they would see how selfish and stupid and small I really am.

They would see that strength bats last—right before the umpire makes the final call and the fans file out of the bleachers. 

I don’t know what I am doing. I never have. 

I second-guess myself every hour of every day.

I am an Autism Mama.

I grow, try, discover, hope—all in a single breath. 

I don’t think we find our strength. That’s the thing.

I think strength is the long, winding staircase we climb without destination. 

We stumble and we fall and we get up and climb again.

We climb straight into the face of our doubt, our worry, our self-pity, our unanswered questions, our mistakes. 

We put one foot in front of the other and we climb to the highest step. We look at the sun setting in its orange sky and realize we were strong enough to get to this point—to this here and this now with this boy and his autism—and we think, well, where else can we go?

I never expected this, and yet I am here. 

I am glad.

I am not the same without him. 

I am on borrowed time.

We’re out of eggs.