Finding the Light: Hope and Understanding for Families with Autistic Children

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The comment read, ‘for some families, there is no light at the end of the tunnel.’

I thought about it all night. And when my toddler woke up at midnight for a hug, and then again while I drank my coffee and watched the news.

I thought back to our hardest days when there was no apparent light at the end of the tunnel.

Our autistic son didn’t sleep longer than 45 minutes at a time and we started every day at 3 am. We lived in this place of hypervigilance, keeping a little boy safe, who seemed to crave danger.

We couldn’t ride in the car or leave the house, but yet home didn’t feel like a safe space.

Our family was no stranger to aggression, self-injurious behaviors, and screams so loud they would make my head spin.

We lived like that for six years while we battled to help our son.

And I can say with certainty, that when some old mom on the internet told me there was light at the end of the tunnel, I most likely plotted her demise in my mind.

When someone is sinking, there is nothing more annoying than someone who’s been there/done that, telling you it will get better. Because, you want a life raft. You want someone who understands exactly what you are going through.

I’m here to say that I do. I completely, and entirely understand because we lived it. Many days we still do friends. I just don’t share those parts daily anymore.

And at the risk of someone yelling at me, I will say it here, because there is someone who needs to read it.

There is light at the end of the tunnel….it just may not be the light that you imagined it would be.

The light be finding the right services and supports.

It might be finding the right medications or the right therapies.

It might be acceptance and getting past the emotional parts the seem to destroy us in the beginning. The comparisons. The differences.

The light might be finding a support system who understands. Friends you can cry and laugh with. Ones who understand.

The light might be someday finding a group home. It might be finding a person you can trust who can help you in your home and find balance with your other children.

When my son was diagnosed at age three, the light was my son talking someday. And being mainstreamed. It was our family traveling to Disney World and not thinking twice about attending a family event.

I still don’t know if those things will ever happen for us.

My light is different now.

It’s my amazing son being truly happy with his life. He loves school. He can sit. He can communicate without words. He sleeps with his brother. He laughs. His body and mind can be at peace.

He rides therapeutic horses and hits a baseball off a tee at Miracle League. He loves boating and swimming. And he has a friend. Her name is Peyton.

We’ve figured out what our light at the end of the tunnel looked like. And I think that’s what I needed someone to tell me years ago.

You have a choice. You can live in the angry, sad, woe-is-me place, one that I knew all too well. Or you can choose your light. Even on your darkest days. And I won’t tell you it’s going to be easy. For me, every single day, it’s an active choice.

It’s an internal battle.

Again, I’m most likely just some old lady on the internet. But once I realized I had a choice, everything changed for us.

Choose the light.

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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