What Matters to Me Now

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When you have a child diagnosed with autism, it’s not about you as the parent.

At least that’s what we are told.

Your sole focus becomes helping your child. Getting them the help they need.

Services. Supports. Therapies. Education. And so on.

That’s the role of a parent. And that’s how it should be.

But one part that is overlooked, I think, is the evolution of the parent. Their journey. And the patience that should be given to them when everything changes suddenly.

It’s not easy ya know. Stepping off the path of the life you imagined into the unknown. And suddenly being expected to the be the expert. The advocate.

Invincible. Brave. Courageous.

I would do it a million times over again for Cooper. But it was scary.

It all changed me too.

I am an entirely different person than I was 7 years ago when that piece of paper was slid across the table to me that read…’autism spectrum disorder.’

My outlook. My ability to advocate. My patience. And so much more. It’s all evolved.

My wants and needs have changed entirely.

They started with…

I need him to be okay.

I need him to be like the other kids.

I need it to be something other than autism.

I need it just to be a speech delay.

I need more time for him to catch up.

Then I need to find him help. And eventually I need to find someone who will listen to me.

Then I need him to be higher functioning.

And I just need him to talk.

I need him to be okay.

As the years went on I started to feel like it was me and my son against the world.

Everything was a fight.

The simple things that everyone else seemed to take for granted were not given to him. Or us.

But I did not give up on him. And he didn’t give up on me.

And as we both settled into autism, and the shock wore off, my wants and needs changed.

I need him to be able to communicate.

I need him to feel good.

I need him to be safe.

I need him to feel comfortable in his own skin.

I need him to be challenged.

I need him to be accepted.

I need him to be included.

I need him to have people who love him.

I need to find people who understand us.

I need the world to see him.

I need him to be happy.

So simple right?

It all comes down to happiness. That’s what matters to me.

Is he happy?

The answer is yes.

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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