July 24, 2024

Bend, Don’t Break: A Mother’s Journey

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I come across pictures all the time. Old ones. Taken back before life got really interesting with four kids.

I usually find them all crumpled up under a couch or stashed in between the pages of an old book.

Sometimes a corner is ripped off. A sign that my oldest, who is autistic and adores photos of his family, has treasured it and hidden it away for another day.

When I found this one I stopped picking up legos and beyblades and internally cursing my kids for being so dang messy and sat down for a moment.

I remember this day vividly. It was December 24. My oldest son Cooper had been diagnosed with autism 67 days prior. And we had moved our family 3 hours south so he could have help.

My husband and I were angry at each other. The kind of anger that festers right under the surface. It eats you up on the inside and the things you loved about each other turn to resentment.

It was the move. And money struggles. Trying to balance work and therapies for our son. And this photo.

See there is only one little boy. Sawyer. He was 2. Cooper refused to take photos with us. If we tried he screamed and wiggled and hurt us and himself so we didn’t force it.

I remember how sad I felt. Christmas. No family photo.

And after, when I shared it, someone asked me if I was ashamed of Cooper. They didn’t use the word ashamed but it’s what they were asking. They wanted to know why I was hiding him.

I think about that a lot. That moment. And how I felt turned inside out. My hard parts were showing all the time. No one saw though.

I see it though. I see me.

I wish I could tell my younger self to get ready to bend. If I could walk up to her and hug her now I would whisper in her ear…

Bend. Don’t break.

And tell her how she will be turned inside out and upside down and twist like a pretzel.

But she won’t break.

Because if she knew that. If our family knew that.

Well, maybe it would have been easier. Those hard years where our family of four appeared as a family of three.

And ashamed? Of autism?

Nope. Not me. Not us.

And that woman?

The one who asked if I was ashamed? I should have told that lady that Cooper wasn’t in the photo because I loved him to much to force him to be in pain. It wasn’t worth it. So I took the pain from him.

And carried it. I still do.

You can probably see it if you look hard enough. It’s in the eyes. That’s where it lives.

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.

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.