What Having A Child With Autism Has Taught Me

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When my son was first diagnosed on the spectrum I immediately dove into research. That’s the kind of mom I was. I wanted to be educated. I wanted to help my son in every way possible.

Of course I took a few days to be really sad. I’m not scared to admit that. The diagnosis, although not unexpected, hit me like a ton of bricks. I remember I felt like the rug had been pulled out from under me. I didn’t know what to do, how to act, or where to start. My son had a label. I was the mom to a little boy with Autism. My life felt foreign to me.

I remember just sitting in my living room watching Cooper as he watched TV for hours. I wanted to see if he seemed autistic. Was he different than before the diagnosis? He seemed no different in my opinion. Same beautiful kid.

I Needed To Find Cooper

After a few days of grieving I turned all my energy into helping my son. I found blogs, books, website, forums. I made phone calls. I joined support groups. His disability energized me in a way that is hard to describe. I became his advocate almost seamlessly. I scoured YouTube like an FBI agent. I wanted to find stories where everything turned out okay. I just need to find one story of a little boy on the severe end of the spectrum, who was nonverbal, and was extremely rigid, and didn’t sleep. I needed to find my Cooper in another child.

I’ll tell you a secret. I couldn’t find one.

Warrior Parents

But what I did find were truly amazing parents of adults with autism. The parents were strong and seemed unafraid of anything. They knew all the loopholes and best services. They knew their counties and benefits. They amazed me. They’d seen it all. Nothing surprised them anymore. And they told me stories about all the lessons they’d learned from their children with autism.

I remember secretly being scared. My son was three. He didn’t sleep. He didn’t eat. We lived in therapy sessions and waiting rooms. I felt like I hadn’t learned anything yet. But, I was too afraid to say it out loud. I felt like a fraud. Autism hadn’t taught me anything yet. It made me feel isolated. It made me feel scared and alone.

Until recently I’d forgotten about all that research I’d done that first year. See, life happened. I had another baby. We moved a few times. Cooper started new therapies and diets and schools. Cooper had a boat load of medical issues. We’d gotten on the roller coaster of autism and hadn’t gotten off. You all know what I mean.

And then yesterday, I was sitting in the living room after a long day at work. I had just got some bad news from the vet. My sweet doggie, my first baby, has a tumor in his thyroid. I was thinking about him and making plans for his surgery on Friday when Cooper came out and asked me to come in his room. I told him…’just a sec. Mama is busy.’ He gave me a scowl and headed back into his room and slammed the door. Yes, my autistic six year old slammed the door. I instantly smiled. Four months ago Cooper would have never done that. He wouldn’t have engaged to that level. I was actually proud of his ‘typical’ behavior.

My Son’s Lesson

I immediately headed into his room. He motioned for me to sit down but not before a quick dance. He was smiling and laughing and pointing excitedly to his Cars movie. His smile was infectious. His laugh and silliness was even more amazing. As I sat there I started thinking about how my son values time and attention over everything else.

I’ve noticed that sometimes people struggle to know how to connect with my autistic son. And I get it. As humans we think that gifts, trips and lavish gestures are the way to a person’s heart.

Cooper has taught me that those things don’t matter. He wants time, tickles and hugs. He wants someone to sit and watch his movie with him. And dance every so often and get just as excited as he is. One of my favorite things about my son is his innocence and sweetness. He knows no greed. He can’t be bribed or bought. He doesn’t care about gifts. He just wants time. And I’m lucky enough to be the mama that gets to give it to him.

Pretty great if you ask me.

Super Cooper Dancing

My Son’s Lesson

I’ve noticed that sometimes people struggle to know how to connect with my autistic son. And I get it. As humans we think that gifts, trips and lavish gestures are the way to a person’s heart.

Cooper has taught me that those things don’t matter. He wants time, tickles and hugs. He wants someone to sit and watch his movie with him. And dance every so often and get just as excited as he is. One of my favorite things about my son is his innocence and sweetness. He knows no greed. He just wants time. Pretty great if you ask me.

#autism

Posted by Finding Cooper’s Voice on Monday, July 31, 2017

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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. L on August 3, 2017 at 4:09 pm

    I hope you know you’re an amazing mother. Cooper could not be a luckier boy!