Standing Still

My son Jack was diagnosed with autism in 2005.

Carrie Underwood had just won American Idol. Matthew McConaughy was named the Sexiest Man Alive by People Magazine, and scientists discovered a dwarf planet called Eris. 

I knew nothing about autism. Aside from a random documentary I’d once watched, and the movie Rain Man with Dustin Hoffman, I never heard of it at all.

Yet I had this toddler who shrieked if I turned the stroller down a different street. He traced the grout in the tile with his finger for long stretches at a time. He gagged on bananas.

There were some red flags, is what I am trying to tell you. 

I made phone call after phone call to pediatricians, and specialists.

I buckled him into the car seat and drove him to centers and appointments and I watched while they evaluated his motor skills, his speech patterns, his ability to stack blocks into a tower.

They pulled out this ragged looking plastic doll and set up a pretend birthday party and clapped their hands and sang while he stared blankly at the wall. 

He didn’t participate in pretend play.

He didn’t have what they called joint attention. He failed to share observations, or interests. In other words, he never followed my gaze when I pointed to an airplane in the sky.

He kicked the blocks to the floor. 

Even after all of this, we were sure he’d outgrow it. 

We thought he’d learn some words and figure out this whole joint attention idea  and hey, maybe blocks just weren’t his thing. 

Slowly, reality crept in, like a stray cat on the back steps.

Autism is forever. 

There is no cure. 

It’s not something he’ll shed, or run from, or discard.

Can I ask you a question?

What do you dream of?

I don’t mean your wonky dreams in the deep of sleep, where you chase a dolphin in a tutu or wear a top hat to a job interview. 

I mean, what do you dream you might do one day?

Do you dream of running a marathon, or opening a bookstore?

Maybe you want to learn how to play the piano, or flip houses.

My son Jack’s dreams are simple, and straightforward. 

He wants to get a license and wake up early on Sunday mornings and drive to get a bagel with egg and cheese from Dunkin’ Donuts.

And yet, even this is maddeningly out of reach right now.

In a culture that values quick wit, and advanced degrees, and highly evolved executive functioning skills, his currency is lost.

Every minute of every day, I try to describe my boy. 

I try to explain his outrage if you sing the wrong lyrics to a song, and the way he ducks his head when he’s uncertain. 

I want to tell you how rare, and special his smile can be. 

Some things, however, I cannot fit into words. I cannot make sentences from the anxiety that rules him, or how hard it is for him to connect with his peers.

When it comes to progress, autism is a lot like the steps on a staircase. 

You jump up, and then stand still for a while.

Right now, we are in the still part. We have not moved for a while, if I’m being honest. 

I’m a tiny bit scared. 

I’m a tiny bit scared the way I am always a tiny bit scared during the still part.

I feel a small, pinching worry that we might never move again.

I feel it in the space between my ribs, where my heart beats when I cannot find my breath.

I cannot find my breath. 

I yelled at him today.          

He was standing over my desk and asking again and again—no, insisting, he was insisting—that he needed my computer to check something on Amazon.

I was trying to finish something and he kept interrupting me and I lost it and yelled that I just needed a minute please leave me alone for one second.

Yelling at this boy Jack is like yelling at a puppy, or a baby bird.

It confuses him. He doesn’t understand it. He claps his hands over his ears and looks down to the floor and I feel defeated as my voice evaporates in the air around us. 

For now. Are you mad.

I want to be better. I am trying to be better.

It’s like I have this whole other world inside of me and I am ashamed and sad and I get tired of picking myself up and starting over again.

But that’s what do. This is the cycle in which I am trapped. 

This boy of mine, he is like a box full of stars. 

He closes himself off, he hides.  

Yet when we open the lid, he lights up the very air around him. 

I can’t cure autism, but I wish I could cure my grief.

You see, autism grief is a heartache all its own. 

It is a tally sheet of loss and gains—an ongoing internal voice telling me where he is, and where he should be.

He should be arguing with his older brother about who gets the car on Friday night, not tracking paper products online.

I am trying to be better. 

There is no cure. There is only the smallest steps forward—so small, you may not even notice them at all.

“For Mom. I will make you. Banana bread. To feel better.

I never dreamed I might be a stargazer. Yet here I am. It’s good.