How Does this End?

FCV7

When my son was diagnosed with autism over five years ago, I thought it was a race against time.

I thought if we did everything all at once, all the therapies and services, we would help him, and he would eventually get back on track.

I knew he’d always have autism. I was never one that thought it would go away.

But I did think we would help him, bit by bit, and eventually he’d be where he needed to be. Which at the time I thought was alongside his peers.

He’d go to kindergarten. He’d learn to read and write. He’d make friends. Find a hobby.

I thought he’d grow up.

As he aged, I watched him fall farther behind. Slowly at first. Then faster. Until there was no comparison.

But in my heart, I still thought he would be fine.

And deep down, buried way down deep, I thought for sure he’d start talking.

Eventually. Some day.

I’d hear stories about kids saying their first words at 8, 10 and 15 and I’d think…we still have time. I would almost obsess on the stories of hope and their ages.

I’d mentally count how many years we had. I’d find out what those parents did to help their kids. And I’d be rejuvenated.

And I’d picture how this would end.

Cooper would be talking. He’d be fine. He’d be living on his own. With support. But on his own. He’d have a job. He’d have people surrounding him.

I would even go as far as picturing myself laughing with his dad while we reminisced about how worried we used to be.

We’d giggle about those nonverbal days that were long gone.

And I’d imagine being a ray of shining hope for the people.

‘You know that Cooper boy? He didn’t say his first word until he was 10. And now he doesn’t stop talking.’

I knew in my heart how this ended. He’d be fine. Cooper would be the one in a million.

And the years kept going. Time didn’t stop.

I’d pray. I’d cry. I’d bargain and plead with God for a glimpse into the future. Just a second to see if I was doing the right things to help my son.

Cooper is now 8. And I live in a totally different place.

Hopeful reality.

I like it here. I take every day, day by day.

I don’t dwell on what we are missing out on. I don’t agonize over the future.

I just celebrate every day. Like it’s a gift. Because it is. I have the most amazing kid.

We celebrate every tiny milestone. Nothing is too small.

A high five to his brother. A walk around the block. Eating an apple. Handing dad the remote. Putting on his socks.

This is my okay place. A place that I struggled to get too.

But once again, it’s becoming apparent to me that my son is getting older. And bigger. So am I.

And I find myself wondering more and more about how this all ends.

I wish I had a crystal ball.

Will he live with us forever? Will we all move to a retirement home in Arizona together? Will his brother’s help care for him?

Will he move to a group home? Will he want to move out and live with his peers?

Will he learn to speak? And if he doesn’t, will I truly learn to accept it?

Will he learn to tie his shoes? Bathe himself. Cross the street safely? Make toast?

Will he go to a concert? Ride a rollercoaster? Will he make a friend? Fall in love?

Will I be able to keep him safe forever?

Will my heart break the day he doesn’t get his driver’s license? Or graduate from high school? Or get married? Or have babies? And the day that his younger brother’s do?

Will I be strong? Invincible?

I just don’t know. I honestly don’t know anymore than I knew years ago when I naively thought this would all be fine.

But I do know I will be right beside my sweet boy. All of us will. Rooting for him. Encouraging him. Loving him. And sprinkling autism awareness everywhere we go.

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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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