Hope, Shifting

Hope: to cherish a desire with anticipation, to want something to happen or be true. –Merriam-Webster Dictionary

In the beginning, I hoped he would outgrow it. 

I hoped he would sleep through night at least once, and manage cereal from a spoon, and for the love of all things holy and good, stop shrieking. 

I hoped he’d learn to read, and understand fractions, and figure out how to eat his food without rolling it around in his fingers. 

I especially hoped he’d stop the rolling thing when we had spaghetti and meatballs for dinner.

During the middle school years, I hoped we would get through each day without throwing computers, or clearing the classrooms, or kicking teachers. 

He did some of things but not all of them. He stopped rolling the meatballs, and sleeps in six to eight hour stretches. 

He did throw computers.

He kicked a few teachers.

He shrieks less now.

Hi.

My name is Carrie.

I have five kids and my second son is diagnosed with autism. His name is Jack. We call him Jack-a-boo.

He is sixteen and six-feet-plus-three-inches-tall. He wears glasses.

Every time I look at him, my heart squeezes together with love and hope and love once more.

I often describe hope as a heavy bag of rocks I carry on my back. I sweat and sway beneath the weight. 

What I have come to realize, however, is it’s always changing. Beneath my very feet, it moves and alters itself. It is the ultimate shape-shifter, this thing we call hope.

What you wish for one day, or week, or year may change completely, sometimes overnight.

At first, I resisted the movement because it is maddening and lovely and frustrating and true.

I hope he’ll get a driver’s license. This may not happen.

I want him to graduate from high school. This is possible.

Once my hope and expectations shifted for Jack, I took a good look around me and changed my entire way of thinking. This might be the very best thing that has ever happened to me. 

Don’t be afraid of the movement, is what I am trying to tell you. This is the sparkling gemstone autism offers us—all tangled up in the mess and the shrieking and the cereal. It offers us possibility. 

I wish I knew then what I know now. I wish I knew I didn’t have to clutch each rock in my sweaty hands, or shift the bag from shoulder to shoulder as I climbed. I could let things go.

The things I thought I cared about—a diploma, a driver behind the wheel, a table without meatballs mushed into it—seem so much less important to me.

I hope for simple things now.

A bike ride for pleasure, the wind upon his face.

Perhaps a summertime kiss, or hands clasped together beneath a starry dark night.

Maybe, just maybe, a friend—someone he can he can tell his secrets and confide his problems and go to the movies.

I hope for abandon, and connection, and happiness as light as a cloud in the sky.

Carry your rocks lightly.

And love fiercely. 

Invite movement, let the ground shift a little, delight in what is possible.

He is not going to outgrow it.

He changed my life. 

You are doing all the right things. 

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.

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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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