Facing Ordinary Life With Extraordinary Kids

Illustration of a happy woman swinging upsidedown from a bungee jump; mountains in background
Jojo Ensslin

I wouldn't sign up for skydiving. And I'd never swim with sharks, at least not on purpose. But there is something that often grips me with that same rush of adrenaline: getting out of bed in the morning.

Facing ordinary life with extraordinary kids, whether they have physical, neurological or behavioral challenges, is something akin to bungee jumping. Parents bounce between educational meetings, therapies, work and home. We push forward because we desperately love our kids. But sometimes the challenges become too great. The bounce goes out of our bungee, and we're left hanging.

It happened to me. I was a single mother and raising a child with autism. My son, Max, was 9, and the behavioral challenges alone were often enough to keep us on house arrest. Every night, after Max had finally fallen asleep, I'd sit in a rocking chair and stare at the wall. I was completely spent, and I felt trapped. There was nothing left in me. I wouldn't quit, but I just didn't know how I could keep going.

I couldn't continue life this way, hiding from the world while bracing for Max's next tantrum. So one night in my rocking chair I took a leap of faith. I decided to fully trust that God had a bigger plan for our lives. Autism, and our circumstances, would no longer hold us hostage.

That was 10 years ago, but the moment is still vivid in my mind because the decision was the hardest, and ultimately the best, decision of my life. It allowed Max and me to start seeing the ways we could break free from the control that autism had over our lives.

In the years since that night, Max and I have learned to:

Face each new day as if it were our last. We don't stay home out of fear that people might stare or the outing might end in disaster. If it truly were our last day, why should I worry about such things?

Never aim for perfection. It's highly overrated and not at all a realistic goal. But we do strive for laughter.

Accept that not everyone understands. Some people stare or even make hurtful comments. But they will learn something about my child — and about loving someone with special needs — by simply watching.

Live creatively. It's OK to build a tent out of sheets and sleep under it or throw a blanket on the living room floor for a picnic.

Realize we're all works in progress. I'll do all I can to help Max learn and grow. But God didn't give me Max just so I could help him. God gave me Max in order to change me.

Enjoy the little things. There will always be therapies, teaching and work to do. But those things should never replace the little moments of joy. I love to see the world through my son's eyes and savor his thoughts and ideas.

Refuse to accept failure. Max and I have had the kind of catastrophes that would make a hurricane look like a spring drizzle. But when an adventure backfires spectacularly, we can't leave it in the loss column. We go back and try again.

Some days, I don't have the strength or self-confidence to keep going. But I push on, knowing that I have a power source stronger than the grip of autism. The same God who has called me to this grand adventure gives me strength for the journey.

Emily Colson is the author of Dancing With Max. This article originally appeared in the January/February 2011 issue of Thriving Family magazine. Copyright © 2010 by Emily Colson. Used by permission. ThrivingFamily.com.

Copyright © 2010 by Emily Colson. Used by permission.

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