This Is Our Autism Too

A video has been showing up in my news feed lately. It was produced by a group called Born Different. As I scrolled the video began to auto play. The caption caught my eye.

‘These twins with severe autism were forced to stay in a prison-like home surrounded by chicken wire fence. Rather than give up, their parents persevered to improve their behavior.’

I paused for a moment. A video about severe autism. A video about my world. A video that shows behaviors and our realities. The realities I lovingly refer to as the ‘secret world of severe autism.’

A video that two years ago, I wouldn’t have been able to watch. I would’ve been too afraid. My heart AND my brain could not believe that this was my future. My son was going to be different. He was going to start talking. He was going to learn how to sit and interact. He was going to be the one in a million.

Now, today, seven years in, I am in a much better place. But it was an emotional journey to get here.

I lived for a while in denial. Then I spent some time in super mom mode. We did every therapy and tried every diet. I read all the books. Did all the research. Joined all the groups.

And the truth is, very little of it worked. My son had severe, nonverbal autism. And it wasn’t going away.

Once I realized that, I crashed. I hit bottom. I cried all those tears I’d been holding back. And most importantly, I allowed myself to picture a future with a son who needed lifelong care. I let myself think about him living with us forever. And needing constant supervision and self care. I let myself grieve the words I most likely will never hear. The milestones and the moments.

I let myself say goodbye to public education and the typical path that children are supposed to follow. Simply put, I said goodbye to what I thought my life would be.

Some will tell you that this is negative. It’s not. I am the most positive person you will ever meet. I call this realistic hope. I adjusted my picture of the future so I could accept reality.

And it’s the best thing I ever did.

I’m not quite so scared anymore.

Take a watch of this video. This is our autism too. It’s a secret world that most can’t imagine. Now when I watch this video I am not sad. I am not scared. I find myself nodding. I want to hug the parents and buy them a coffee or a drink and talk about everything they’ve tried. I want to talk about their lives. I want to tell them they are doing an amazing job.

Parents of special needs children are superheroes. They are angels. They are saints. They refuse to stop. They are fighters who refuse to give up. And most of the time they are paving their own path. They are going against the grain. They are standing alone. And they are tired. Really, really tired.

Even as I type this Cooper is lining up all of the chairs in my house and humming…LOUDLY. All the curtains are drawn shut because he won’t allow them to be open. Jamie jokes that we live in a cave. The doors are triple locked. I know because I check every time I walk by.

This video is all too familiar. It is our world too. I understand the fences. The locks. The destructive behaviors. The heartbreak. The hope. The future. ALL OF IT.

But most of all, I understand the love. The complete devotion to a child that will never falter. Not ever.

https://www.facebook.com/BornDifferentShow/videos/1802239059827520/

Please note that we do not use the Son-Rise Program. My son currently receives ABA and we have had WONDERFUL success with it.

Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook and subscribe to our newsletter.