Baby Steps: A Life Lived Differently

Charlie. For you will start. To drive soon.

Yes, Jack. That’s true. 

People ask me all the time what it’s like to have a child with autism. 

What is it like? To have a boy like my son Jack?

I never, for one moment, forget he has it.

Autism is the tympani of my background—the drumbeat to which I dance day and night.

We have worked so hard for the basics.

Eye contact, appropriate language. Not touching his food before he eats, not asking the server if she’s tried the eye cream that eliminates dark circles, not getting up in the middle of the night and wandering around the house. 

Phone skills.

Social skills.

Conversation skills.

We spend hours upon hours working for what most take for granted.

What is it like?

I don’t know.

I exactly know.

It is like raising a rare, exotic bird who no one else quite understands but me.

Everyone admires his unique feathers and his unusual point of view. That is, until he bites the teacher during the school assembly, or runs around in circles during a fire drill.

And this lovely bird—with his colorful wings and musical song—well, he may not fly as high as I hoped.

Every day is a small, infinitesimal move toward accepting this.

I used to say there is nothing my son Jack can’t do.

Now I realize my words were little more than a poetic gesture, as if autism is something you can outrun, or recover from like a bad head cold.

You can’t outrun it. 

You can’t cure it.

You simply live around it, and beneath it, and with it. 

Sixteen years later, I am still learning this.

And now, more than ever, so is he. 

For Charlie. I am older. Than you.

Yeah, I know Jack. I know. 

Sometimes I wonder what people think when they hear the word autism. I wonder how they feel.

Does their stomach squeeze a little bit and maybe they think, well, that’s nice but secretly they are happy it didn’t happen to them?

Autism happened to me. I don’t know how else to describe it.

I was pregnant and I had a baby and he cried a lot and he squirmed whenever I touched him.

It happened, and I haven’t been the same since.

I have been happy/scared/sad/frustrated/hopeful/inspired.

But not the same.

I will never be the same. 

This is okay. 

It is mostly okay. 

I remember when he learned to walk. He was thirteen months old—on the later end of normal but still in the range, according to the doctor. 

He’d pulled himself up on the couch. He stood there proudly. 

And then he stepped away from the furniture, and took a few tentative baby steps. 

I remember thinking I had never seen anything so bold, or brave.

I mean, imagine you weren’t sure you if your legs were strong enough to carry you, but still you picked up your feet and moved forward. 

Charlie. You will drive. Before I do.

It looks that way, buddy.

What is it like to raise a boy with autism?

Well, I guess it can be hard, if I’m being honest. 

I hurt from a loss that is not my own.  

All day long, there is a little voice inside me.

It beckons me to consider questions I don’t want to answer.

He’s sixteen now, where is this going?

Where will he work?

How will he live?

What happens when I die?

What is it like?

It is an internal battle to celebrate one child, and soothe another. 

It is an everlasting effort to look past the life’s prescribed timeline, and into a new space altogether. 

We live on autism’s timeline now. That’s what I tell him, anyway.

What do you feel when you hear the word autism?

I want you to feel nothing. 

Or maybe I want you to feel everything.

I want you to feel happy/scared/sad/frustrated/hopeful/inspired.

Mostly inspired.

I will never stop believing in him.

Where is this going?

I don’t know. 

What is it like to raise a son with autism?

It’s like holding fire in the palm of your hand, while the wind threatens to blow it out and the ocean tries to extinguish it altogether. 

Inside of the chaos sits a tiny, anxious bird. He is beautiful. He is trying. He needs me to save him from the heat and the storm and the rising tide, if only I knew how.

For now, we’ll take baby steps. After all, is there a braver kind?

A life lived differently is not a life less lived. Every day, I am more and more certain of this. 

Charlie. For maybe you. Can drive me to work. One day.

Of course, buddy. Of course I will.