An Honest Look at Playing with Cooper

I took this video of Cooper last night. We were ‘playing’ trains. I have so many memories of setting up this train track with Cooper and thanking God that he played with something. And telling therapists that he was fine because he played with toys.

I was lying to myself. Lying to them.

I set the train track up. I put all the trains together. If one thing is off he will destroy the track and throw every single piece. There is no putting things in the trains. No stopping at the station. No pretend play.

Trains give me anxiety now.

I actually went as far as hiding the train stuff for months when we moved. But, they reappeared in the garage.

And he loves trains. And that’s all that matters in this house. So…we play trains.

This is an honest look at life inside the nonverbal autistic world.

Cooper has no patience, high frustration, head hitting and meltdowns. Every step is exhausting. The days are long.

It’s funny listening to myself doing the verbal prompts. It’s so natural now. I didn’t even know I was doing it. And no wonder I am exhausted all the time.

https://youtu.be/8jX6GDKf1B4

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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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1 Comments

  1. Dina on May 16, 2015 at 12:36 pm

    I see everything you mention in the video. I see lots of other things, too. I see a kid who actually follows directions (e.g. find the red one, turn it on) really well. I see a kid who is expressing himself and communicating (with facial expressions, gestures, and behaviors) the *entire* time. I see a kid who is referencing his mother and looking to her for guidance and mirroring nearly the entire time, which speaks to your great connection. Has anyone provided you some guidance about mirroring Cooper’s frustration? Like when he starts losing it, hitting his head, saying, out loud, “Oh, Cooper is feeling very frustrated. Cooper is frustrated the trains aren’t working the way he wants. Cooper is hitting his head because he feels so frustrated and doesn’t know what to do.” It provides two functions: 1) you are “with” him in his emotional crisis, even if there is nothing you can do to “fix it,” and 2) you are giving him language with which to understand what he is experiencing. Having overwhelming feelings that you don’t understand and don’t have a name for is extremely disregulating