If He Get’s Sick

Here in New Hampshire, we are on day 6,382,091 of quarantine.

Okay, okay. I’m exaggerating. Its only day 5,847,235 of quarantine.

Either way, it’s been a long time.

Hi.

My name is Carrie.

I have five kids.

I live in New Hampshire.

Our state has been under a shelter-in-place since March 13th.  We are tired of it. We are tired of ourselves, and our house, and our yard.

We are tired of walking around the neighborhood. Our dog, Wolfie, is especially tired of walking around the neighborhood. He runs to his bed the second he sees the leash.

I am tired of cooking, and reminding people to do math worksheets, and exercising in a basement cluttered with Christmas decorations.  

Depending on the day and my mood, the three-foot tall Santa propped up in the corner is either mocking me, or cheering me on with his blank eyes.

The other day two of my boys—the two who can be counted on for their easy banter and gentle relationship—got into a knock-down-drag-out screaming match about a blanket that looks like a tortilla.

This is our new normal: Santa eyes, math worksheets, and tortilla-shaped blankets.

And the masks? Don’t even get me started on how awkward/weird/unnerving it is to walk into a grocery store or the pharmacy with a mask across my face.

I can’t breathe.

I can’t smile.

The cord feels itchy behind my ears.

I wear it anyway.

I wear it every single time.

You see, whenever I feel tempted to shove it in the pocket of my jacket, or leave it in my car altogether, I think of my son—the one who has autism.

Hi, I’m Carrie and I have five kids and my second son is diagnosed with autism. His name is Jack.

When Jack feels sick, the first thing he does is take a shower. If I hear the water turn on in the middle of the afternoon, I know he has a headache or a stomachache. Whatever it is, it hurts.

If Jack caught COVID-19, he wouldn’t understand. He would be confused.

What if he had a hard time breathing and he would want to take a hot shower but we’d have to call an ambulance instead?

He would absolutely panic.

Whenever we need to coax Jack through an uncomfortable situation, or a place he’s never been, we use what’s called a social story.

A social story is defined as a learning tool to help individuals with autism better understand the nuances of interpersonal communication so that they might interact in an effective and appropriate manner.

The thing is, there is no social story for ventilators, or intubation, or the isolation of an Intensive Care Unit.

There is no social story for riding to the hospital with your mother or your father, but not both.

There isn’t a learning tool to help my son understand the way a virus can invade his body, and he will be carried, wheezing and screaming into the back of an ambulance with strangers while his mother stares, all wide eyes and trembling tears, as her vulnerable son gasps for breath.

Or maybe his father.

How do we choose?

My husband Joe is better in an emergency. He doesn’t get rattled. He knows the right questions to ask.

But I am the mother. I know that he needs to wear his watch everywhere he goes and he must have wipes for his glasses in case they get smudged.

Yes, Joe would take great care of him but I am his mother and I should be there if he can’t breathe he needs to breathe he will be terrified.

I would take his watch and hold it in my hands.

I would keep his glasses clean while he sleeps.

What are the nuances here, exactly?

Listen, I can’t tell you what to do. I would never even try. I can’t insist you wear a mask or you respect social distancing or wash your hands.

All I ask, is you think of my son.

He is over six feet tall. His cousin gave him a snow cone machine for his birthday. He uses it every night.

Carefully, he fills it with ice. He turns it on, and he positions the paper cup at the bottom just so. When it’s full, he picks a flavor of syrup, and adds it to the coldness.

I don’t want to choose.

Please, don’t make me choose.

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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