Autism for Cooper Comes and Goes

So as a new Autism parent I find myself muttering the words, “I freaking hate Autism” on a regular basis. Actually, in our house we call it ‘Tism.’ Short, sweet and almost cute. We always tell Cooper we are going to tickle the Tism right out of him.

Cooper has been a happy kid lately. Part of it is because we aren’t going to therapy right now. We aren’t challenging him. But the other reason is that we have successfully removed a lot of Cooper’s triggers.

Many of these will make you laugh.

4934df2bf3c47d27fa72451fd9370e15For example, when we went couch shopping a month ago I made sure to buy a couch WITHOUT removable cushions. I have no throw pillows. I rarely have blankets on my couch. Why you ask? Because Cooper will continuously put them on the floor. And I couldn’t handle it. I felt like I was living in a crazy world. I’d pick them up, leave the room, come back and everything would be on the floor. I thought I was losing my mind.

We did make one mistake though and buy a couch that has electronic recliners. I will be siting there and Cooper will walk up and push the button. It’s like a God-damn ride. In-Out-In-Out. that lasted 1 week. It is now unplugged.

We also removed ALL of our landscaping rock. Yup. Crazy again. Our whole house was surrounded with white landscaping rock. First, it was hideous. Second, Cooper was obsessed with throwing it. We got to the point where we couldn’t handle it anymore. He threw everything. Shoes, toys, rocks, sticks, whatever. It all went into the woods. He also went through a phase where he threw everything off the deck. Even the plastic deck furniture. Our deck is now empty.

Our toothbrushes are hidden. The remotes are hidden. We rarely leave an IPad or computers or phones lying around. These are Cooper’s triggers. We know them and we’ve eliminated them. Cooper also has a horrible memory. If we remove a trigger he will forget about it.

And in doing this, Cooper is rarely stressed out anymore. Life has been pretty damn good lately. Coops has been stepping away from the TV and playing more and more every day. Last night I wrestled with the boys for over 30 minutes in the basement.

So I was pretty surprised last night when I went to cut his hair and Autism reared it’s ugly freaking head.

I got out the clippers, strapped Cooper in his booster chair, put on Barney and got ready to cut his hair. I think I’ve been cocky lately. And then boom. The world came crashing down. He thrashed and hit and screamed. Reflecting now, I think it was the cut hair on his neck that was freaking him out. As his screams got progressively worse Sawyer got really worked up. Soon, both were screaming.

And per the usual, I was half done. I was able to finish but the damage was done. I was sweating and on the verge of tears and begging for it to be different. It took every fiber of my being to keep my cool.

Autism for Cooper comes and goes. Or more so, it hides. I will even forget about it sometimes. But it’s always there. Waiting for something to trigger it.

I could look at this two ways. Thank God we have good moments. He’s not always struggling. But why is it so freaking hard to see a ‘normal’ Cooper? It’s almost like it’s teasing me and showing me the boy he could be. Not cool.

I had to share these pictures. Sawyer found a pair of my sunglasses and put them on at Home Depot. So cute. Cooper saw us laughing and mimicked us. 1 month ago Cooper would NEVER have done this. Thank you sweet Jesus for progress. It keeps me going.

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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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6 Comments

  1. Kate @ Did That Just Happen? on September 8, 2014 at 11:51 pm

    So proud of you for the adaptations to make your life easier! Yes, the ’tism is still there, but how much more peaceful is your brain now that every time you walk in the living room the pillows aren’t all over the floor! 🙂



  2. Ann Hicks on September 9, 2014 at 2:21 am

    Just have to share, reading about Cooper getting a haircut, was a major flashback for me! Sounds exactly like Chuck was 26 years ago! He now lets me buzz his hair without incident and has for many, many years. You’re making baby steps Kate, and you’ll get there. The throwing things, the couch pillows, things you describe, are all flashbacks for me—things I’d actually forgotten about until that memory came back. Ann Hicks



  3. rgemom on September 9, 2014 at 2:59 am

    We still struggle with the clippers on the back of the neck. He freaks out. And you do what you have to do to minimize triggers to maintain your sanity. Hang in there Momma. Hang onto those brief moments – they will help you get through the dark days. BTW – we have some unpublishable words on how we feel about autism. Sometimes saying choice words at a thing make you feel better. Hugs!



  4. Dina on September 9, 2014 at 4:14 pm

    My son is terrified of clippers and any motorized thing that might approach his head. The solution: I just tell the gals at Great Clips: no clippers, only scissors, just do your best and I won’t hold you responsible for not getting it perfect. We don’t do buzz cuts, just get the hair out of his eyes, off his ears, and prevent any mulleting. Because really, it is not worth the battle, the fear.



  5. Jill on September 9, 2014 at 5:59 pm

    OMG@ hair cuts. I HATE THEM!!! UGH. Great job removing Cooper’s triggers. My sister does that when I come over to her house-she calls it “Mason proofing” LOL.



    • Avatar photo findingcoopersvoice on September 10, 2014 at 1:10 pm

      Haircuts are the devil. Sawyer is due for his first cut and I think we are going to make a huge deal about it and bring him to a salon. I want the experience!