Why I Am Afraid

I had a terrible dream the other night.

My son Jack was walking up our driveway. He was crying—sobbing, actually—but he couldn’t tell me what was wrong. 

I ran to him and asked him over and over again what happened.

He just stood there, towering over me, taking deep gulps of air as tears streamed down his face.

He was so distraught. And in my dream, I couldn’t help him. I couldn’t reach him.

When I woke up, my heart was racing. I was sweating, and yet I felt a deep chill. 

For the entire day after, I carried a deep sense of dread with me.

For the last nine years, I have told our story.

I have written words and spoke sentences and explained my son’s autism diagnosis. 

I have tried to capture him on paper, and in conversation.

It’s easy to assume I tell our story because I am brave. 

In fact, it is the opposite. I am afraid. 

I am afraid someone will hurt him and I won’t be there. 

This is perhaps the darkest part of special-needs parenting. 

Jack is sixteen. This makes him very is vulnerable in ways most people can’t imagine.

For one thing, he can’t talk when he’s under stress. He literally cannot form the words in his brain and make them travel to his mouth and out into the air. He cannot ask for help.

He is a boy who won’t make it out of a burning building unless someone is right there with him. He will not shout that the water is too deep and he can’t touch the bottom, or that a strange person tried to touch him in places no one should touch him.

I worry all the time.

I worry if there’s ever a fire in the grocery store and he’s standing at the Redbox–he stands at the Redbox every single time we go to the grocery store, and even if I’ve warned him we aren’t renting a movie—but if he’s standing there while I wait to check out and there’s a fire and I can see him and I can’t get to him, I know he will never get out on his own.

I’m scared one day he’s going to get run over in a parking lot. He assumes everyone will see him first. 

He’s vulnerable.

I’m not saying he’s dumb—not at all. He is pure, and unguarded, and authentic. He believes people are good and the earth is round and that cars cost exactly one hundred dollars.

You will never meet another person like him in your life. I guess you could say he’s like a like painting full of color and light—a curious mix of red and blue and green that, at first glance, looks like a big old mess.

But then you step back, and you look again. You see each color separately. You look down at your feet and you look up once more, and you realize it is more than a painting. It is a tapestry, and it tells a story about a boy.

I am determined to tell you about my son and his autism and my fear and our triumph so you may see him, and hear him for yourself.

I have to tell you about the color and the tapestry and I have to make you feel as though you know my Jack-a-boo, so that one day, you might help me.

Will you help me keep him safe?

Will you peer into the blaze of hatred, and behold the beauty of a complicated child?

Will you show compassion for the unusual, and mercy for compromised?

Will you think before you speak, and breathe before you act, and always look behind you when you put your car in reverse in a parking lot?

Will you listen for those who have no voice?

And if the fire alarm goes off in the grocery store, and you see a boy standing all alone with his eyes wide open, will you lead him out the door?

With his hand in yours, please, run. Run from the heat as if you are outrunning the sun.

I love him with my fiercest heart. 

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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