It Started With Hope

My story, like most stories, started with hope.

Sixteen years ago, hope welled inside of me like an eternal spring of flowers, butterflies, and sunshine.

Hi. My name is Carrie. I have five kids and my second son has autism. His name is Jack.

Ever since he was diagnosed nearly sixteen years ago, I hoped for many things.

I hoped the doctor was wrong.

I hoped he would outgrow it.

Mostly, I hoped he would maybe sleep longer than an hour and say the word milk instead of screaming.

Over the years, I have come to understand you cannot teach a person how to relax. There is not enough language for it.

Sure, I tell him to drop his shoulders down, and dangle his hands at his sides. I show him how to take deep, cleansing breaths.

Still, he stands tensely, poised on the edge of fight or flight. A turtle tight inside his shell, he protects himself.

Hope.

Hope is the double-edged sword, the paper cut that stings, the proverbial carrot on a stick.

It prods us along, step by step, yet it also holds us back.

Every autism diagnosis is different.

Like snowflakes, our children drift upon the spectrum bell curve, and settle into their own space.

It’s easy to assume a kid like Jack doesn’t understand current events, or public policy, or pop culture.

Maybe it’s hard to imagine he knows.

He does though, that’s thing. He understands.

He reads. He absorbs the articles and news stories into his heart. Then he turns them over and over in his mind like a copper penny. He takes an idea that is shiny and new, and exposes the tarnish.

He knows he is different. This is the razor-edge sharpness of his particular diagnosis.

I read. People are making fun on Tik-Tok. Of autism mannerisms.

He doesn’t know what a mannerism is.

But he knows what meanness looks like.

Meanness looks like people sitting bravely in front of their keyboards and behind their IPhone and mimicking the way kids like my son look, and sound.

Meanness is silent, and insidious, and gutless.

I believe in  goodness. I have to, you see.

I have to believe I didn’t plop this boy into a world where people take the unusual, the misunderstood, and the complicated, and try to generate a laugh, or more followers.

This is not the first time. To be made. For fun.

This is my son. This will be his battle in life—to help people know him and see him and hear him, all the while standing precariously on the brink of anxiety’s steep cliff.

But if you remain very quiet and you don’t move too quickly, he will let you share the edge with him.

Maybe, he will even talk to you.

His words might not seem like much, but they are. With his brief conversation, he is telling you, hey, you are worth my beauty. You deserve my secrets. Be still, and I will let you inside of my dreams.

He will tell you the first time he held a penny in his hand, and the day he watched the moon eclipse the sun.

Hope.

Over the course of sixteen years, my hope has adapted and changed.

Once upon a time, I held my breath and hoped this boy might talk.

Now, I hope the world will listen.

They don’t. Even know me.

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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