Imagine Something Hurts

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Imagine something hurts.

But you can’t tell anyone.

You want too. You try even. But it comes out in different ways.

Ways that people don’t understand.

You try to get attention. But they won’t listen.

You scream. You hit your head. Because that’s where the pain is.

The screaming makes people frustrated. The hitting makes people stare.

You drop to the ground because you are exhausted. You roll. You try to get the pain out of your head by pressing your ear to the cold, cool ground.

People stare more. They snicker.

Mommy says the floor is dirty. Get up. When you don’t move, she joins you on the floor. She lies with you in the lobby. Both your faces pressed to the ground. Smiling. Giggling at the train whistles coming from her phone.

Later you overhear her tell dad that she deflected every mean look. But it still hurt to see them judging.

People ask you if something hurts. You just stare. You don’t know how to respond.

And you can’t point to it either. Because pointing is hard. It’s confusing sometimes.

It’s hard to sleep because of the pain. Eating is hard too.

Some people say, oh, that’s just autism.

But it’s not. You know that. Your mom knows that too.

But no one listens.

Your mom makes phone calls. She leaves messages. She makes appointments.

You hear her say, ‘you have to help him.’ Sometimes she gets mad. She jokes that she’s going crazy.

She brings you to doctors. Sometimes they listen. Sometimes they don’t.

You don’t like going to the doctor. It’s scary.

The people try and touch you. Take your temperature. Listen to your heart. You don’t like to be touched. It’s scary.

Waiting is hard. And there is so much sitting. And shushing. You are supposed to stay in a room.

The room smells funny and the lights are really bright.

So you turn them off. Then on. Then off. Then on.

You can tell that your mom is exhausted. She is sweating.

But you are too. And you don’t act sick. Instead you are laughing. And running.

Mom is trying to help. But it’s not working. She’s explaining that you show pain in other ways. But they don’t seem to be listening.

So you get louder.

It seems that no one will listen to either of you.

It’s not just autism. It’s pain.

If I had the power to change one thing about my son’s life…I would give him the ability to communicate when he is in pain.

It’s that simple. That’s all I need.

To be able to help him. To make it alright.

Tomorrow is a new day. It will bring a visit to a specialist. There will be behaviors. And screaming. And waiting.

But we will get answers. Because living with pain is not an option anymore.

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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