A Life Without Words

Six years ago, a therapist tough loved me. My son had recently been diagnosed with autism. On paper he was what they call nonverbal.

There are lots of ways to explain what that means. It’s not black and white. It’s a complicated, unique, description.

For him, it meant he had no spoken words. Not one. He had no consistent sounds for certain words either. He didn’t use sign language. Or a speech device. He couldn’t type his wants or needs.

It meant if his sock was bunched or his head hurt he couldn’t tell us.

He screamed a lot.

And got frustrated. And I could see the anger in his eyes. And the worry in mine. Nonverbal scared me a lot. And this therapist said to me…with a hug….it’s time to prepare for possibility of a life without words.

She didn’t have a crystal ball. She couldn’t see the future. She just knew that as his mom, I needed to open up my mind to other forms of communication.

She was right. But what she didn’t tell me was that my son would one day use the characters in his shows to speak to us. And it would be amazing.

When he wants to play baseball he shows us Dora and Boots hitting a home run.

When his new baby sister cries, or he feels sad, he plays an episode of Peppa the Pig. The one where Peppa’s baby brother George cries.

When he wants us to know he loves us it’s always Barney’s ‘I Love You.’

He shows us race cars and rocket ships and trips to the dentist and doctor.

And just this morning, when I told him he had to wait a few minutes for breakfast because I was holding his sleeping sister, he turned on The Polar Express and blared the conductor screaming…’WAKE UP’ at max volume. I couldn’t help but laugh.

Nonverbal doesn’t necessarily mean non communicating. It doesn’t mean quiet or withdrawn. It just means different in our world. And different can be wonderful and beautiful and scary and so many things at once.

This morning, Cooper held his sister for the first time. He counted to ten. And not a second longer.

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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Kate Swenson

Kate Swenson lives in Minnesota with her husband Jamie, and four children, Cooper, Sawyer, Harbor and Wynnie. Kate launched Finding Cooper's Voice from her couch while her now 11-year-old son Cooper was being diagnosed with autism. Back then it was a place to write. Today it is a living, thriving community of people who want to not only advocate for autism, but also make the world a better place for individuals with disabilities and their families. Her first book, Forever Boy, will be released, April 5, 2022.

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