Asking the World to Change

72fd2021325db755f74202817ee1f938I was at a retail store this past weekend and watched a mom struggling to manage her son during a meltdown. I started thinking about how not that long ago I would have never, ever, ever taken Cooper shopping. At least not on my own.

He would run and shriek and I would sweat and cry and vow to never do it again. And finally, when Cooper was 1 1/2 or so I stopped. We stopped going to restaurants and events and whatever other places people go to.

There is a tradeoff between fun and insanity. I decided I was not going to bring Cooper places to make other people happy. He would hate it. I would hate it. It was a big step for me. And to be perfectly honest I took that step alone. And without support. And I don’t regret it one bit.

That all got me thinking. Do I feel discriminated against because of Cooper’s autism? Do I blame the world because we can’t do a lot of things.

The answer is no.

I’ve never felt like Cooper was unwelcome anywhere. Or that people were mean to us. Or judging us.

But I HAVE felt like there are places we shouldn’t go and things we shouldn’t do.

I am always reading about how our special needs kiddos need all of the same advantages as other kids. And I AGREE 100% with this. But….I will be perfectly honest. Because that is what I do.

I don’t think its the world that can’t handle Cooper. Right now, Cooper can’t handle the world.

And I’ll take it even further.

Cooper can’t do a lot of things. He just can’t. Cooper could never be in a typical classroom by himself. He could never sit at a table and have a snack. Or go to the library. Or join in a game in gym class.

This past weekend we took Cooper to a birthday party at a friends house. He really, really struggled. He ran, darted, rolled, touched, slithered, melted down and the list goes on. I sat back and watched him as he attempted to knock down a DVD rack for the 25th time. He doesn’t know what to do in social situations.

Imagine if toys didn’t interest you. You also didn’t care to interact with anyone. You don’t really care about food or cake or presents. Other kids don’t interest you. Games do nothing for you. How would you entertain yourself? And now, imagine you can’t communicate with anymore.

I can’t imagine what that feels like.

When this happens Cooper turns to getting attention by causing damage. Hence, trying to knock over a DVD rack. He’s smart. He know if he knocks it over a reaction will come.

FullSizeRenderSo, Cooper and Jamie sat in the truck and watched a movie. Sawyer was playing and I wanted him to stay and enjoy himself. Even just for a little bit. And Cooper was finally happy.

I’m not sad for Cooper. Cooper doesn’t know he is missing. Or doesn’t care. Sawyer does.

Someday, I am going to be crushed because my son won’t be invited to a birthday party. Or maybe no one will come to his birthday party. I know that day will come. But right now I don’t think like that.

I guess I don’t think the world is against his autism. Or us. Or however you want to word it.

Cooper just can’t do most things. I think about our trip to the zoo a while back. As more people arrived at the zoo Cooper got visibly stressed. He would cry and hit himself in the head. We ended up moving quickly through and eventually leaving. I wasn’t mad at the zoo. A year ago I would have been really upset.

There is nothing that zoo could have done differently. The zoo didn’t make sense to Cooper. It is what it is.

I read a quote somewhere about how our kids shouldn’t have to change….the world should have too. But I don’t think about it like that. At least not yet. And maybe the difference is that Cooper doesn’t know about his autism yet.

We brought the boys to the park last night. I was standing there watching all of the kids play. There was a group of boys that were 5 or so playing. And Sawyer was in awe of them. There were kids swinging and sliding and running. And Cooper was throwing rocks against a chain link fence and laughing uncontrollably at the sound. That was his idea of fun.

A year ago that would have made me sad. I would have missed the fact that he was having fun and only saw that he was different. How silly of me.

My son is different. And in the rawest form I can say that it sucks. But what sucks more is letting it rob you of happy times. I can’t change Cooper. I can’t make him join or play or even talk.

I’m not trying to change Cooper. At least not anymore.

Avatar photo

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.

Share this post: