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gillian marchenko

Author and Speaker

1

Who’s in your pit crew? Parenting a child with special needs

08.06.12

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Driving alone before parenting a child with special needs

Sometimes I think all any of us are trying to do is create mini kingdoms.

People need to rule. We need to be noticed. We crave praise. And we need others to notice we can handle our lives.

Or at least, if I am honest, I do.

So we build parallel universes. Oh, we think that we all live here on the big ball called earth, but actually, at least in America,

I think we live in our cars.

Think about it. We’re individuals. We don’t need help from others. It’s imperative to create the facade that we have it all together. Sometimes we fight it, most of the time we are unaware of it, other times we seek it out. We drive on streets and avenues, highways and bypasses in our Hondas and SUVs like they are our world, and we are the center of it. Once in a while we pull up to another person’s universe and roll down the window for a chat, then quickly say our goodbyes and speed off again.

Parenting a child with special needs

Before the birth of my baby with Down syndrome, I was pretty successful at creating and functioning well in my own little universe. I was the main driver of my life-car. I ruled. I was untouchable, safe. My life sped forward.

Then Polly was born, and right away, I found myself driving through the worst rainstorm of my life. I tried to drive on, but my tires were all flat, and the windshield wiper was all clogged up. I couldn’t see.

Strangers, people from parallel universes, started to knock on the windows of my life. They opened the doors: therapists, doctors, prayer warriors, friends, family. Everyone stuffed in my car, pushing the roominess out, making it hard for me to feel like I had any control.

I didn’t want passengers.

I’m a mom.

I wanted to be able to do everything Polly needed myself.

But that’s just not realistic.

When you have a child with special needs, you realize quickly that there is no way you can keep driving alone, parallel to all the other people driving along on their own in life.

When you are a parent to a child with special needs: Down syndrome, or autism, or cerebral palsy, or bipolar disorder, you start to realize that passengers in your car our vital to your family’s well-being.

You start to realize that maybe this was how life was meant to be; not just trusting and relying on yourself, but having a pit crew, ready to help you when you get a flat, ready to pass you a cold drink, or help you when you need to get out of the car quick.

Parenting a child with special needs forces you to share your life, and your kid’s life with others. It’s not always easy, but there are some really good things about doing life that way.

I’ve come to love the people who work in the pit of my life to keep our family car moving. My husband, my kids, our church, therapists, doctors, family, friends, teachers.

If it weren’t for them, I surely would have crashed by now.

Parents of kids with special needs? Who do you have in your pit crew, helping you out?

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  1. gracesgrist says:

    um. this is awesome. thank you. i needed it today. love….you!

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