For An Autistic Kiddo…

I often question how much I should push Cooper. And motivate him. And I really ask myself how much I should expect from him. If I completely lower my standards than I feel that I have given up on him. And his future. But I also can’t expect him to behave like a typical kid. Those skills are not there.

I had Cooper’s yearly evaluation at Fraser last week. It went pretty well. He has really, really improved in the last year. I heard a lot of comments on how loving he is. What a great kiddo he is. And how social he is. As his therapist was saying these things to me I noticed that in my head I kept saying…for an autistic kiddo.

He has great eye contact…for an autistic kiddo. He has great social skills…for an autistic kid. For a special needs kid Cooper’s understanding is right on track. And so on.

Why was I doing that?

It’s not like I don’t have a real kid. Cooper is very much real. I still do everything that I would with a typical child. I don’t really get anything in return but I still do it.

And it’s not like I am lying. For an autistic kid Cooper has amazing eye contact. For a nonverbal kid Cooper has amazing communication skills. Those are facts.

I could go on.

I am holding my shit together exceptionally well for a special needs mom. For an autism mom I am learning the path of acceptance. I can talk about autism without crying. I still can’t quite think of Cooper’s future with rose colored glasses but it is coming. For a special needs mom I am doing ok. In public, I appear to be happy.

As a special needs mom I have learned to hide my broken heart amazingly well.

In that sense it seems ok to say those things. But when I say them about Cooper I feel like I am lessening the value of his life.

It’s a fine line. Cooper cannot be expected to behave or act like other kids. Nope. He just can’t. I can’t expect him to behave at the park. Or sit in a classroom.  I can’t expect that he will listen to me when I tell him no. Or that he won’t do something a hundred more times.

But I also can’t let him behave like a wild animal. Cooper is smart…No way around it. He is a smart kid. Not smart for an autistic kid but just a plain ole smart kid.

I think as parents of special needs kids we are made to feel that our kids are less than other kids. I feel it. And I do it to myself. I know this to be true. I beat myself up constantly. Last night I actually cried on my walk as I thought about Cooper at age 18.

I thought about him shaving. Of all things, right? Will he ever be able to shave himself? So random. And then I cried.

What mother should have to worry about those things?

And then I said the sentence, “as a special needs mom I worry about every single second of Cooper’s life.”

Cooper has never asked me to play with him. Never spoke to me. Never wanted to go somewhere with me. We rarely share moments together. We rarely laugh together. He’s never told me about his day. Or made a friend.  I’ve often described it in saying, “Cooper is just here.”

But that doesn’t make him less of a real child. I gave birth to him. I nursed him. I’ve cried and worried just like every other mom. Special needs doesn’t change that. I still earned my mom card just like everyone else.

For a kid, Cooper is amazing. And as his mom, I am doing the best that I can.

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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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3 Comments

  1. NickyB. on August 8, 2015 at 1:25 am

    Kudos to you mom!



  2. Natali on October 13, 2015 at 2:38 am

    About the shaving thoughts… I remember when my daughter was young, I switched from fretting about her starting her period to complete denial that it would really happen. When it finally did, I thought my life was over. If you have any interest, I wrote about it in a blog post… http://thetransitionaltruth.com/autism/life-skills-always-taught-ever-emerging-in-importance/

    She hates having her armpits and legs shaved. So we just don’t. Much of the time she has pits that look like a man, and harry legs. Sometimes I care, especially when I’m trying to dress her for a special occasion. But most of the time I don’t care anymore. It’s one of those battles I decided wasn’t worth it for the most part.



    • Avatar photo findingcoopersvoice on October 16, 2015 at 2:29 pm

      The teenage things scare me. I am in denial too. I try to tell myself that it won’t happen. That Cooper will stay this little boy forever. And maybe I think that because he is so delayed and of course doesn’t talk. It’s hard to imagine him as a man I guess. Thanks for sharing!