Finally, An Improvement. Thank You Sweet Jesus.

If you talk to parent’s of autistic kids they will often say that their kid goes through periods with no improvement. And often you can mix in a little regression.

For example, when Cooper was two years old he forgot how to drink out of a straw. Or sleep is a big one. Cooper didn’t sleep through the night until he was 2. And then slept through the night from age 2 to 3 and then suddenly stopped again. There is no rhyme or reason.

Look at your child right now. Imagine if they all of a sudden stopped showing signs of learning or improvement. Imagine the fear. And the frustration. You would do everything you could to try and figure out why. But there are no answers.

I think about my typical 2 year old. Every single day he is learning. And sharing his learning with anyone and everyone that will listen. He mimics actions and words. He participates in activities. You name it he is doing it. At least once a day I chuckle at something that he has learned. His new thing is to exclaim, “OH MER GOSH” whenever something exciting happens. Hands down the cutest thing I have ever heard.

We moved here a little over a year ago. Actually, Cooper’s one year anniversary at Fraser is October 6th. That is 12 months of intense therapy. He now has outpatient treatment 5x per week, speech 2x per week, OT, 1x per week AND 5 days of an autism focused preschool.

For the first 6 months or so I saw numerous gains. It was wonderful. I saw actual improvements. Then preschool ended and Cooper had the mornings free. He stopped improving.

He went 6 months without a change.

Now I know that we are always learning. We are always changing. But I couldn’t see it.

Six months ago the gains stopped cold.

His attitude changed. And slowly regressed. The head hitting started up again. The odd behaviors returned.

And all the things he COULD NOT DO became even more evident. And of course it didn’t help that his brother was almost potty trained and verbally excelling.

Cooper was not potty trained. He had zero use of silverware, nor did he eat any foods that required silverware. He would only drink milk or juice…out of a preferred cup. He had no words. He’s was of haircuts and the word medicine. He refused to play or interact with other kids. He rarely acknowledged his brother. The whining was returning.

And the slight regressions began.

The more stressed he would get the less we would try. Now I know that challenging our kids is a part of parenting. But this was different. Challenges resulted in head hitting and screaming. Cooper started to push his brother and kick at me.

I stopped going to the park or out to fun events. Cooper would throw sand…even eat it. He would run and dart. He refused to ride in a stroller or walk along side of us. He only wanted to be carried.

It is so hard to describe. We tried to pinpoint what the triggers were. Why would improvements suddenly stop.

His severe constipation even returned. I had to start giving enemas again.

And in set my depression.

We were moving along so well. I started to have hope again. And then BAM. Hello autism.

This lasted six long months.

And then the first week of September Cooper started to play. He started watching less television. He would go upstairs and play trains in his room. He would set up his train track to the best of his ability. He would tear about his room and jump on his bed. He would play puzzles. Look at books. And his little shadow Sawyer would be right there alongside of him parallel playing.

I began to hear giggles coming from his room. Cooper would run and Sawyer would chase.

I cried dozens of times watching them interact.

Sawyer began saying things like…”I love my brother” and “mom, where’s my brother at?”

And then Cooper fell in love with family pictures. He would hold them, sleep with them. Everywhere we went he had his pictures.

He started peeing on the potty. He goes once a day now.

He ate a piece of peach and a piece of banana.

He started drinking out of different kinds of sippy cups.

Just like that.

I watched him take his shoes off. And take his shirt off. These are activities I had never seen before.

What was the trigger? Or the change?

Nothing. Nothing visible. I spoke with Cooper’s therapist and we determined that he is now socially at the age of a two year old and is thankfully entering his terrible two’s. This is huge.

I know that this could and probably will stop again. And it’s frightening. Especially when you don’t’ know the why or how or the what.

It’s like a dirty game of roulette. I know that he could stop learning and sharing at anytime. I want to find joy in it but I don’t want to get too attached. I think losing it would be harder than never having it.

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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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5 Comments

  1. rgemom on October 1, 2015 at 9:38 pm

    Autism is a dance – two steps forward, eighty-five steps back, usually with no rhyme or reason. Sending you hugs. Revel in the days of sunshine. The rain will come again, but you have to hang onto the light to make those days easier.



  2. kim on October 1, 2015 at 10:24 pm

    I love the family pictures….so awesome. “the days are long, but the years are short”



  3. Lyndsey on October 2, 2015 at 1:08 am

    Glad to hear about brighter days! My kiddo loves family pictures too. We made him some books from Instagram pics and it really helped his language! Your a great mom to him. I would urge into looking into underlying medical reasons why kids on the spectrum don’t feel good enough to learn, can’t sleep, won’t try new foods and struggle with constipation (we’ve been there!)



  4. redlipstickmama on October 4, 2015 at 5:00 am

    Big hugs to you and your family – the interactions between your sons made me very teary . I hope you will enjoy this improved situation for a long time. Xoxo



  5. Jenn Soehnlin on October 9, 2015 at 8:39 pm

    Those are all AWESOME changes and milestones! The playing is huge. Love that he loves family photos. And peeing on the potty?! Whoo hoo!! Celebrate and cherish them all Mama. 🙂