Trust the Process

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I’ve never claimed to be an expert in child development. Or autism. Or anything related to it actually.

But I do know my son.

I know his quirks. His triggers. His joys and his fears.

I know just where to tickle him to get the best laugh. And that if he sees exposed flesh, on a stranger or not, he will blow a raspberry on it.

I know that he likes to sleep with five blankets, photos, mail, books and magazines. And that he won’t go to bed without his brother.

I know that he loves sounds. Sneezes, hiccups, funny animated sounds too. He loves the sound of anything hitting metal. And I know he will do it over and over again. And over again.

I know that he is happiest at home. But loves to swim, jump on a trampoline, and visit trains.

I know that his initial diagnosis was mental retardation. And I know that I have never gotten over hearing those words. I also know that if I hear you say that word in a negative way…even as a joke…we will not be friends. Not ever.

I know that he is really, really smart. Like really smart. And I also know that he can’t be tested like every other child so his diagnosis of severe intellectual disability can be shoved where the sun don’t shine.

I know he has debilitating anxiety. I know it overtakes him. And he can’t stop it. Or control it. And I know for a fact that it is not his fault.

I know that the world has a long way to go when it comes to understanding and accepting autism. Awareness is a great start. But acceptance is the goal.

I know he loves his brothers. And I know in my heart that someday he is going to be the best uncle on this planet.

I know he is going to amaze us. I just know it. He is going to do so much more than we ever thought possible.

I know I am so afraid sometimes that I can’t breathe. I still can’t think too far into the future. I can picture Cooper at age 20 or so. That’s as far as I can go right now.

I know I am afraid of dying. I can’t leave him. And at any given time I will have a panic attack if I think of his life without me.

I know that I want my other son’s to take care of Cooper after I’m gone. But I don’t know how to ask. Or what to say. I just pray that they will.

I know that people are really, really mean when it comes to autism. And they aren’t always strangers. Sometimes they are fellow moms. Living the same life as me.

I know that since we started Cooper on anti-anxiety medication his life has changed drastically.

I know that you need to find the therapies and tactics that work for your child. For us it’s the basics. Speech therapy, occupational therapy and ABA therapy.

I know that as a mom I need to calm down. And enjoy my son.

But most importantly, I know I need to trust the process.

I know this because it’s working. Cooper is thriving.

A few days ago we visited the doctor and afterwards we went to his favorite store, Choo Choo Bobs. When we went there six months ago, before we started him on meds, Cooper had a really brutal meltdown over magazines.

And this trip was different. He rocked the doctor. He walked safely. He rode the elevator. He sat in the room. And after he let us go through a drive thru to grab lunch before the train store.

Typically, a detour would send him into a rough state.

Cooper enjoyed the store. He was relaxed. He looked. He picked out treasures. Three magazines and two DVD’s. Which I consider a HUGE win.

I can count on one hand the number of things Cooper has asked me for. And as his mom, I would buy him the world if I could.

He chose a t-shirt and immediately put it on. And after, we paid, walked out, and drove home.

I know that so much of this sounds so silly. So simple.

It’s not in our world. These successes and wins are so new to our family that we are scared to even acknowledge them.

My advice, trust the process. Trust the therapy. Trust that it will get better.

Keep setting goals. Keep working towards them.

And never, not ever, give up.

I used to always think we were running out of time. That was the feeling I had. We had to do more and more because he was getting older.

Well, I learned that our kids are life long learners.

At age 8, we are seeing wins and progress in areas that we have worked on for years.

Take a breath. Set goals. Dig in. And trust the process.

PS. If your kiddo loves trains, I highly recommend checking out Choo Choo Bob movies. They are Cooper’s absolute favorite. Click HERE.

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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. Morgan Medeiros on March 22, 2019 at 5:16 am

    Hi, Kate! I read your blog regularly and really enjoy it. However, one sentence in this post really stood out to me: “his diagnosis of severe intellectual disability can be shoved where the sun don’t shine”.

    Clearly, any diagnosis is upsetting to receive as a parent. As the sibling of someone with a profound ID, I am curious to know- why was this particular diagnosis (ID) so upsetting to you, whereas the autism diagnosis you have been able to embrace?