What I Want You To Know

I stood at the stove the other day, stirring some soup I’d made from leftover Easter ham.

My son Jack sat at the counter, reading the back of a DVD.

It was a warm day, and the kitchen was bright with late-afternoon sun.

If you were to look in our window, you’d probably think we were an ordinary mother and son, enjoying some quiet time before dinner.

But things are rarely as they seem.

Are we imposters? No, not exactly. We are simply trying to play an unexpected role—me the patient mother who knows what to do, and he, a teenager with crushing anxiety, rigidity, and raging hormones.

See, Jack has autism. And just a few minutes earlier, he was screaming at me that the soup I was making smelled like badness and I shouted he didn’t have to eat it but he did have to stop screaming at me.

I like to lead by example, is what I am trying to tell you here.

He stomped around a little bit and came back holding the case for Disney’s Maleficent.

I bit my tongue because he has been reading and re-reading the movie’s running time and rating for, oh, maybe a week.

He does this, you see. He perseverates and obsesses over random objects and facts, and I have to choose, or decide, when to break the momentum on the freight train that runs through his mind.

My son has autism.

He is near me all the time, as if the umbilical cord that once connected us has never really been severed. It stretches, and grows over time. If I am in a room, say my office, he is stretched out on the window seat, long legs dangling.

If I am in the shower he calls for me, to “check” where I am in the house.

Together we orbit one another—two planets in our own mysterious solar system.

You might imagine, with all this time together, we have long, interesting conversations. Arguments, even.

But we don’t. We’re more like two court reporters, offering observations about the weather, and music, and food.

Tomorrow, it will rain.

Yes, buddy. I know.

For me. I do not like Air Supply.

Really? I do! I love them. In fact in college my roommate and I—

Okay. Good.

There is rarely any nuance to our exchanges—not much room for expression, or opinions.

There’s a lot written about what causes Autism Spectrum Disorder—genetics, vaccines, poor maternal bonding, pesticides.

One time I read an article that said circumcision was the reason. I basically stopped reading after that.

I want you to know Jack was born with autism. He came out with an Individualized Education Plan clutched in his wrinkly newborn hands, if you will.

He was nine pounds, three ounces. He arrived on Mother’s Day.

I want to tell you he is like a cactus, my son.

He can be prickly.

He stands alone, even when he is with all of us.

He requires nothing, from anyone. He is determined to do life alone.

I want you to know there are no days off, when it comes to autism. Not Christmas, or Easter, or when I had a hysterectomy last fall.

I can’t simply let things go because I am too tired, or I want a break, or maybe we’ll just circle back to it tomorrow and start reminding him again that he cannot shout F$%& at the top of his lungs because we ran out of cheese.

I want you to know he wakes up very early. He has done this his whole life. It drives me crazy, especially when I’ve stayed up until midnight reading or binge watching Big Little Lies. I hear him stomp into the shower and turn on the water, and my stomach knots.

At the same time, I’m jealous.

See, I have always wanted to be someone who springs out of bed at dawn’s first light. The rare times I do, I feel like I am holding a secret in the palm of my hand.

He witnesses a part of day others rarely know—hushed morning dew clinging to springtime grass, and a sky streaked with an orangey-pink sun.

He ignites something in people. I can’t explain it. They talk to him and they are eager to know more—they lean in close to hear what he has to say and try to understand the boy beneath the diagnosis.

This is the most beautiful thing.

I want you to know I love him.

Whatever you might read about autism and poor maternal bonding, please, think back to the words on this very page.

I always loved him.

I love him.

Even a cactus blooms the loveliest flower.

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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Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook, subscribe for exclusive videos, and subscribe to our newsletter.

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Finding Cooper's Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you're never alone in the struggles you face. And once you find your people, your allies, your village....all the challenges and struggles will seem just a little bit easier. Welcome to my page!


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