It Could Be Him

When the lovely Kate from Finding Cooper’s Voice asked me if I would write about current events every now and again for her page, I thought, sure! Why not?

I figured I’d glance across social media every once in a while and find stories about kids with autism. Maybe some of them would be heartwarming, or inspiring, or even a little bit sad.

Maybe I’d touch upon discrimination, and heartache. But I’d keep it light, and bright, and motivational.

Yet week after week, I read articles that affect me deeply—reports on kids with autism asked to leave church ceremonies, or left out of class parties, or a 3-year old boy removed from an airplane because he couldn’t wear a mask.

I read them and I look at the pictures and I see my son Jack in each of those moments—stimming during Mass, holding his hands over his ears while the kids sang Happy Birthday, working so hard as a teenager to keep his mask over his nose.

Then I sit and I write very quickly. I don’t wordsmith it, or make the message pretty. It is essential, and directly from my heart.

The other day I was lying on my bed, scrolling through Facebook. I saw the headline about a police officer who arrested an 8-year old boy because he hit a teacher. There was a video.

I kept the sound off, but I watched the footage.

The officer turned this small boy around, and had him place his hands on the wall.

He took his handcuffs out and locked them around the child’s tiny wrists.

He warned him he was going to jail.

Watching it, I felt a slow, rising panic somewhere deep within me.

That could be my son, you see.

That could be my son Jack who has autism and gets deregulated and lashes out and once, in sixth grade, hit a teacher.

The thing is, even if you handcuffed him and arrested him and loaded him right up in a police cruiser, it wouldn’t matter. Fear tactics and harsh discipline don’t prevent kids like Jack from the next meltdown, or aggressive episode. They only hurt, and scare them.

Maybe you think he is bad, or spoiled, or rude.

Maybe you think he should know better, and that he should make good choices.

It’s not about knowing better, though. It’s about his central nervous system misfiring. It’s about alarm bells going off in his brain because the lights are too bright, and anxiety descending like a snowstorm upon his spirit.

It’s about losing speech when he needs it the most.

We lose the things we work the hardest for when our nervous system is overreacting. Did you know this? Think about it. Think about the skills you strive the hardest to master—patience, willpower, communication—and how difficult it is to keep them close when your heart begins to beat fast under pressure.

I’m not trying to make excuses here. I am simply trying to help you understand what deregulation and stress in a diagnosed child can look like.

He was a wreck in sixth grade. I don’t know how else to say it.

He was overwhelmed with the academic and social demands, but he didn’t know how to tell us with words. And when the storm hit, he bit, and he cried, and he threw things.

My son. He did these things. How I hurt for him. How I feared for him.

Every day after school he’d come home, and curl up in my bathtub for an hour, and quietly cry. If he wasn’t in the bathtub, he was in backyard swinging on the swing in the fading spring light.

I had never felt so lonely, or isolated.

Many people will tell you their son or daughter gets all A’s on a report card.

Some will tell you about the honor roll, or the soccer trophies.

Not many will describe the way their son of autism bit and threw and raged and screamed.

Very few will explain they registered with the local police department in case his name came up or he ran away or became aggressive.

I will. I will tell you.

It’s the only thing I can think of to do.

These headlines and videos make my spirit raw. I am weary, and afraid.

Perhaps this is a good thing. Perhaps it helps light a fuse inside of me.

I will fight for him.

For the rest of my life, I will fight for his space in this world.

And I will fight for your space in his.

I will fight for his seat in a church pew, and his right to celebrate, and his ability to learn.

At the exact same time, I will teach him to wear a mask and show him how to calm his body and breathe deep breaths when the storm strikes.

I will tell our story.

I wish you could see him now. He came through the fire. He doesn’t hit or bite anymore. He is sweet, and earnest, and he would take your breath right away.

Written by, Carrie Cariello

Carrie Cariello is the author of What Color Is Monday, How Autism Changed One Family for the Better, and Someone I’m With Has Autism. She lives in Southern New Hampshire with her husband, Joe, and their five children. 

Carrie is a contributor to the Huffington Post, TODAY Parents, the TODAY Show, Parents.com. She has been interviewed by NBC Nightly News, and also has a TEDx talk.

She speaks regularly about autism, marriage, and motherhood, and writes a weekly blog at www.carriecariello.com. One of her essays, “I Know What Causes Autism,” was featured as one of the Huffington Post’s best of 2015, and her piece, “I Know Why He Has Autism,” was named one of the top blog posts of 2017 by the TODAY Show.

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