What follows is an open letter from a father to his non-verbal autistic son. As many as 40 percent of children with Autism Spectrum Disorder are nonverbal. Historically, doctors have told parents that children over the of five that don’t speak never will, but an increasing amount of research suggests that language delays are far more varied.
I remember the moment it truly hit me that your autism was forever. And not just a word. Or a thing that other people’s kids had. It wasn’t when your mom told me that something seemed off. Or when she did the checklists late at night. I remember I got so mad at her. I defended you. I listened to her say things like nonverbal and delayed and I refused to believe that was you.
I couldn’t figure out why she was looking for something that simply wasn’t there. Those kids weren’t you. I mean, we had things to do. Me and you. We were going to fish and hunt. I had already mentally planned our trips up north with the boys. I was going to spend endless hours playing baseball with you — like Grandpa did with me. I would coach your teams. I was going to teach you to ride a bike. Drive a car.
When you were my first born. And I imagined you being my shadow. I had plans.
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Your autism didn’t hit me until it got hard. You didn’t sleep. You refused to eat. You screamed at everything. I’d take you outside to the backyard and to the garage and I remember watching you look at the swing set wondering what to do. You stared at the sandbox and toys. You refused to hold the bat I bought you. You looked through trucks. I bought you a motorized car to ride around in. You refused to sit in it.
When we said goodbye to kindergarten I knew it was real. I spent some time being sad. You didn’t know that. Neither did Mommy. I didn’t show anyone. I couldn’t.
I remember sitting in a boat with your “uncles” and listening to them talk about their kids. One was starting hockey. Another one was learning to read. They were your age. I knew we were different. I know now that it was ok for me to be sad and to talk about my feelings and that I could have confided in them for support.
Now you are 8. You are a big boy. You still have no words. You have never ridden a bike. We have never had one of those father-son moments I pictured when you were a baby. But I’m learning that’s okay. I still have incredible things to offer as your dad, even if they weren’t the things I originally envisioned.
Last night I watched you lie on the ground in the middle of a baseball field and stare at the clouds with your mom. You pointed up. You squealed. You smiled. You threw a ball. You clapped. You jumped. You wrapped me in the hugest hug. Then you were done.
It wasn’t the baseball game I pictured. But it still counts.
You have taught me patience. You have taught me it’s okay to be different. You have taught me it is ok to be sad when life doesn’t go as planned. You have taught me that it is ok to talk about those feelings. You have taught me to fight for what is right. To stand up and say this is wrong, and to encourage others to stand alongside you and say the same.
Your mom and I have spent 8 years trying to find your voice. And honestly, we don’t know if we ever will. But you gave me one.
My job on this earth is to create a world for you, and other kids like you. To be the voice you don’t have, and to build the kind of community I want to see you grow up with. I used to shy away from people with disabilities or just not consider them. Before you, I was so caught up in my own world that I probably wouldn’t have even noticed. Now, I see things differently. I notice. You did that for me. And I hope my example will do that for others.
I promise you I will spend my life keeping you safe and making this world better for you.
Jamie Swenson runs his own insurance business in Minnesota and raises three busy boys with his wife Kate. When he’s not coaching sports or arguing with tiny versions of himself, he’s dreaming about sitting in a boat and fishing.