Autism: When Your Child Is Newly Diagnosed

I was chatting with a young mom last week. She told me her son had just been diagnosed with autism. She asked if I had any advice to share. 

I stumbled through a dumb answer about progress and hope and bell curves. Looking back, I wish I’d told her something else entirely.

I wished I’d told her to cradle his head between her hands. 

Bend down and smell his hair after a bath.

Share a cookie before dinner. 

Notice.

Notice all the things he can do, instead of what he can’t.

Buy the balloon in the grocery store—the one that floats toward the ceiling, dusty and half-deflated.

Buy it because his eyes lit up when he saw it.

You see, today is my son Jack’s 18^th birthday. 

When I wasn’t looking, he grew up.

In two short months he will head off to a residential program. He will audit one class a semester at a community college.

It’s not about a degree. I could care less about a degree.

It’s about an experience to call his own. 

Autism is a little like wearing glasses with two very different lenses.

When I look through one side, I see all the progress this boy has made. I see a high school senior when 9th grade was a disaster. I see the occasional small smile.

Yet the other lens tells a different story.

I can’t imagine him sitting through a college class—listening to the lecture or taking notes. 

I can’t imagine him away from us.

When Jack was four, he had a hard time walking down the stairs. Carefully, he’d place one foot down, then step the other foot to meet it. 

We invented a game to helped him. We named it after the brightly colored plastic bricks. Side by side we stood, showing him how to move a whole stair step at a time.

One Lego, two Lego, three Lego, four!

At night I dreamed in color. I dreamed in plastic. I dreamed of long, winding staircases.

When he was eight, we watched the Wizard of Oz. As the credits rolled by at the end, he sat straight up and announced, “The Lion. He has autism.”

I asked him why. Why would he think that?

“Because he is afraid. All the time.”

That night I dreamed of a lion’s eyes, pleading and lost. 

Please, dance before bedtime. 

Turn up the music and clap to the beat.

Do it for me. Do it for it for all the times I saw the diagnosis more than the boy.

You are going to make a mess of things some days. That’s just how it goes.

Forgive yourself.

You are his mother.

Resist the urge to be anything else: speech therapist, behavior analyst, teacher.

The work will always be there. That is the very thing about work. It is the stray cat on the back step, begging for more attention and milk. 

Think less about tomorrow, and more about today.

Take off the glasses with the double lenses. 

After all, childhood isn’t measured in progress or years.

It is measured in moments.

It is moments full of delight and despair. 

It is faded beach towels and stomach bugs and cannonballs on sunny afternoons.

It is winter snowballs, spring bike rides, unexpected thunderstorms, all strung together like lights on a string.

The truth is, once in a lifetime you get the chance to meet a person who is unlike any other person you have ever met.

A person who is complicated, and honest, and tenacious, and pure.

My son changed who I thought I was.

And who I planned to become.

I don’t know what the future holds. I don’t know if he can sit through a college class.

So we’ll do what we always do. We’ll try. 

After all, a wave returns over and over again to kiss the shore, no matter how many times it’s turned away.

I wish I could have it all back again.

The nights around the television watching the Tin Man, cookies on a white plate, a staircase made of color. 

With all my heart, I want it back. Yet I know it is time for him to try to fly.

I believe in him. I always have. 

My wizard. My lion. My heart full of hope. 

My wild-child, my game-changer, my Sunday son.

In his own way, in his own time, I know he will set the world alight.

Cradle his head. 

Inhale his dewy sweetness.

Feel the music in your tender loose limbs and smile for the loveliness of this one and only life.