Who Would I Be?

Who would I be without him?

I ask myself this question every once in a while.

I don’t ask it often, because that could turn into a slippery slope, if you will.

Hi.

My name is Carrie.

My husband Joe and I have five kids. Our second son, Jack, has autism. He has had it since the very day he was born. He is sixteen now.

Without autism, I would be carefree. Maybe even spontaneous.

Naïve.

Unkind.

Judgmental.

I might know what it’s like to sleep past 5:45 am. That’s when I hear my boy wake, you see, and shuffle down the stairs.

No matter how tired I am, I try my hardest to open my eyes and get out of bed. I join him in the kitchen and we sit together, quietly, as the sun and the birds and the world wakes from their collective purple dawn.

I have been writing and thinking about autism for sixteen years now.

I have considered it from every angle. I have tried to understand all the different points of view—his, mine, the cashier at Walgreens, the bus driver, the librarian, the server at Applebees.

I have especially tried to consider autism from the point of view of the Applebees server. You know, after Jack asked her why her hair was so puffy.

If autism was a needlepoint pillow—you know, the kind with a saying stitched across the front—I have picked it apart until the yarn that once spelled Autism Spectrum Disorder lies in a colorful heap at my feet.

Then slowly I thread the needle again, and attempt to reassemble the tapestry.

I choose the yarn carefully. I try to make sure the colors go together nicely.

I weave in memories, and highlights on our journey together—the way he begged for Skittles in third grade, the day he ran away from down the street and I had to chase him in bathrobe.

I can’t be spontaneous. That’s the thing. I can’t because I have to prepare him and warn him and make sure he understands the plan.

Then I have to call ahead and make sure I know there is space for him to move and regulate his body. I have to warn everyone I am bringing a boy with autism and he jumps a lot and it will be fine but he might be abrupt or ask people how old they are. Also, there will be swear words.

So I stitch and I sew and I weave. I try to match behaviors with causes, and understand anxiety, and decipher autism’s language.

Autism is a listener’s language, you see. It is for those who can wait patiently as the words come, halted and rare.

Patience may not be my best quality.

When I’m finished, I look at my work.

My Son Has Autism.

I admire the somewhat crooked letters. I have never been the best at sewing. But overall, I am pleased with the message.

Then I flip it over, and consider the back.

The back is not always beautiful. In fact, it is often messy, and tangled. The yarn crisscrosses in big zig-zags. There are lots of knots.

Yet, when you look closely, well, it is lovely. It tells a story of mistakes, and Skittles, and an everlasting story of chase and pursuit.

At the same time, it brings me back to my original question. Who would I be without him?

I’m not sure it even matters, but I’ll try to answer it anyway.

I would be rested, yet restless.

Smart, yet relentlessly uninformed.

I would be a lesser version of the person I am today.

The worst part is that I wouldn’t know it. I would think I was whole, and good.

He makes me whole.

He makes me good.

The back of the tapestry is even better than beautiful, if you can believe it. The back is glorious, and right. It has a lightness all its own.

I hope one day, he thinks back to our early morning together, and he feels glad.

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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