From Darkness to Light: Reflecting on Our Autism Journey and Celebrating Progress


We used to not be able to have lamps in our home.

That sentence right there. That’s the one that people always comment on when I say it during presentations.

Then they chuckle when I follow it up with how for weeks we had to eat with headlamps on. In the dark. At our kitchen table.

I’m sharing this here because my son Cooper just had one of his best weekends ever. And I spent a little time last night looking at old photos and remembering the beginning of our autism journey.

Because, as parents, we need to take time every now and then to acknowledge our kid’s amazing progress.

It’s humbling. It’s powerful. It’s healthy. To look back.

We couldn’t have lamps because he would break the light bulbs with his hands. And we couldn’t afford to put in overhead lighting.
We couldn’t have mirrors because he would break the glass.
We couldn’t have picture frames on the walls because he would take them down and stomp on them to get the photos out.
Our beds were stripped daily. Mattresses brought out to the living room.
Items were put into the bathtub.
Chairs were lined up.
Blinds had to be shut. Blinds had to be open. Until we just removed them.
Doors had to be triple locked. Alarms set. All to keep him out of the street and ponds.
The day started at 3 am with running. Screaming. Intensity.

We don’t have any of these behaviors anymore. Cooper is 12 now.

He still has the same diagnosis he was given at age 3.
Level 3, severe nonverbal autism with a language impairment.
But life is a lot different now. Progress over perfection. That’s what matters.
He can communicate his wants and needs. Not always verbally but in other ways. Which is huge. Because behaviors are communication. Remember that.
He feels good. He sleeps. He has a team of professionals who challenge him, motivate him, teach him, protect him, and adore him.

And most importantly he is so happy.

This morning he reminded me that he has 4 days of school left until summer vacation.
Last weekend he spent two nights on our boat. Tonight he has Miracle League Baseball. On Friday he has a field trip.
I don’t need photos to see the progress.
Because I feel it. A calm. A peace. Joy.
I miss the chairs a little bit. I can admit that now. He used to stand in front of them like a conductor and move his arms to music that only he could hear. Then look to me and smile.

And I’d pretend to hear it too. For him. Because that’s what moms do.

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.
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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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