Winter

Hi.

My name is Carrie. I am a wife, a yogi, a writer, a book-reader, and a mother of five.

I am also Special Needs Mama with a Special Needs Kiddo. His name is Jack. He is sixteen years old.

When you have a Special Needs Kiddo, the weekend can feel very, very long.

I know, I’m not supposed to admit this. I’m supposed to tell you all the fun things I create for my son and I to do together—interesting outings with built-in lessons, long hikes through the autumn trails, planning elaborate meals.

He hates hiking.

And he doesn’t just, uh, plan anything.

He organizes and strategizes and fusses and worries. He writes long lists, and conducts research online.

The weekends around here are long is what I am trying to tell you. I want to be honest about this. I am tired of feeling guilty that I sometimes dread them.

He wakes up at the same time.

He takes his shower.

He eats his breakfast.

And then, he wanders. He pesters.

He follows me around the house.

He begs for screen time.

He asks a million questions about dinner and I can barely have a conversation and he is always—literally always—standing right next to me.

He has nowhere to go, that’s the thing. No friends to call, no sleepovers where he carries a pillow and a sleeping back under his arm out the door, no pep rallies or football games.

On top of that, the pandemic stole the things he loves most: going to the movies, eating out in restaurants, and holiday dinners with extended family.

So he relies on me. He uses my emotional heartbeat to regulate his own, and when I say this is an exhausting, gargantuan task for which I am largely unsuited, I am speaking my truth.

I love him fiercely.

But some days, I just want to be his mother.

I don’t want to be his entertainer/companion/social cruise ship director.

Remember when we quarantined last spring and we drifted from room to room around all day, doing things which may or may not have needed to be done?

Organizing drawers, fussing with throw pillows, researching recipes.

We used meals and television shows to anchor ourselves to some sort of normalcy, and routine.

Yet still, time stretched, long and thin and empty. This void—this emptiness—well, it made us anxious.

This is Jack’s life every single day.

Every day he works to fill his time with tasks, and small routines, and household chores.

It breaks my heart. There is no other way for me to explain it.

Here in New Hampshire, the leaves are beginning to lose their lively hue, and fall—lifeless, and still—to the ground. Every day, the trees are a little less full and vibrant.

Soon, winter will be upon us.

With winter comes an abbreviated school schedule, and bitter cold weather, and no more outdoor seating at Chipotle.

This year, there won’t be a big, bustling family Thanksgiving dinner, with his beloved grandfather at the head of the table.

There won’t be seats in the theater, with large, overflowing containers of popcorn.

There won’t be an in-person instruction from November through the end of January.

I am worried. I am nervous. I don’t know how I’ll ever keep him occupied.

If you are a Special Needs Mama with a Special Needs Kiddo, and you are staring into the blank abyss of a COVID winter, where the few sparks of happiness of regular, ordinary life have been removed, you are not alone.

I am here with you.

I am here as you listen to the footsteps that shadow your every movement throughout the day.

I am here as you answer again, yes—yes!—pork chops for dinner and dinner is at 6:30 like every night and then you will watch Twenty-Five Words or Less on the couch.

I am here as you listen to the edge in your voice and feel a pinch of hopelessness, and doubt.

So when the days are cold and long, let us be gentle with ourselves.

Let us be gentle with one another.

I love you with my whole heart.

Special Mama, you are not alone.

Love,
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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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.