Autism and Glass Siblings

Hey Mom, what did you do today?

My oldest son.

Your voice across the miles.

What did I do?

Well, I did nothing.

And I did everything.

I noticed a broken window blind and scheduled an appointment for the eye doctor.

I passed by your room and straightened the quilt on your bed, readying it for your visit at Thanksgiving.

What did you do today?

Everything and nothing.

Nothing and everything.

I filled out a form, found a library book, and sent some e-mails.

I thought about Christmas.

I wrote a check for the school fundraiser and ran on the treadmill. 

In the store, I searched for kind-of-green-not-yet-yellow bananas. I bought avocados. I smiled at the cashier and nodded hello to a neighbor and loaded bags into the car.

Home again, I assembled dinner long before I was hungry to eat.

Chicken, potatoes, carrots.

Then I folded.

I folded sweatshirts and pajamas and shorts.

I matched socks and put the towels away. 

I thought about each of my children.

All day long, you dance across the horizon of my mind, like colorful, celestial butterflies.

High school drama.

Flu shots.

Baseball games, social media, driver’s ed.

Autism.

After the folding, I sat at my desk.

I looked out the window.

I watched a red bird flutter between branches.

I saw a squirrel dart between trees.

I chased a deadline.

As I struggled to bring words to life on the page, ideas danced across the horizon of my mind. 

Colorful butterflies.

Long-term residential care.

Adult services.

Waiting lists.

Medicaid.

Get him on Medicaid, they say.

But why, I say.

We can pay, I say.

It is not for you, they say.

It is for him.

It is for him.

But what was the point of the work ethic, and the degrees, and the jobs and the dental school if we cannot provide for our own son?

Autism.

A slippery riddle without an answer. 

Our story is not a new story. It’s not even particularly original. Yet it is ours, to clutch against our hearts.

How badly I want to know the ending. 

What did you do today?

Glass siblings.

That is the phrase used to capture kids who grow up alongside a diagnosis. 

Even now, all these years later, I feel the urge to apologize for the times I came up short. The times when my patience was thin. Guilt, it seems, has no expiration date.

I like to think I savored some moments.

The second just before the lights came on after you blew out the candles. 

The time we laughed ourselves silly at the beach. 

That night we hid around the corner and under the table and behind the counter after dinner and pelted each other with baby carrots.

Every family has their own music to which they dance.

My oldest son.

I am counting on you.

Of course I am. How could it be any other way?

It isn’t fair. 

I know. 

I used to think life was fair. 

Then autism came on the scene in the shape of a 9-pound, 3-ounce baby boy named Jack. Your brother. And my mind was forever changed.  

It isn’t fair that once your father and I are no longer here, the responsibility will fall to you.

I’ll never know what that is like for you.

Autism is a listener’s language. It speaks to those who hear—those who seek to understand. 

Still, we struggle for fluency. We become impatient, we talk too fast, we forget to listen. 

We are learning. 

Yet you were always his voice, even when the rest of us couldn’t find the words.

What did you do today?

I hoped.

I hoped that one day, whoever you are—check-writer, deadline-chaser, colorful butterfly.

You will remember the warm quilt at night, the roasted chicken on white plates, and the moment your wish floated in the candle’s warm glow.

And when you wake up in the morning and pull your own quilt tight, you will smile to yourself, and remember it was good. 

I don’t know about the glass part. 

A little bit of iron and a whole lot of heart. Perhaps that captures you.