My son has DMD. He’s in a wheelchair. He’s 12. He can’t run, jump, or walk. He used to be able to. But DMD has taken that away.
His favorite class in school this year is English. He loves his teacher. She’s a superstar.
His second favorite class? P.E.
That’s right. The one class where he can’t do what the other kids do. The one class that could remind him of his disability.
And the one class that’s social. Where instead of starting at a blackboard, he can engage with others. He has made more friends in PE than in any other class. In PE, the other kids have figured out ways to include him in their activities.
I was thinking about that when my wife and I were talking about some of our experiences growing up, how adults other than our parents allowed us to participate in different events. My sister got to go to Austria with friends. I’ve never been. My cousin took my brother to see his first movie.
I sat down today and considered some of the families who have disabled kids. Many of my friends have asked “how can we help?” The honest answer is most families feel guilty asking for helping constantly, so I’ll give you some ideas. Please share yours as well.
1. Take the other kids and do things.
I know it sounds counter intuitive, but sometimes the siblings of disabled kids just aren’t able to participate as much in activities because the parents simply can’t “throw the kids in the car” and run around. Camping, hiking, fishing, bike rides, one way that you can help a family who has a disabled child is including their other kids in your activities. We make every effort to give our kids a normal childhood, but doctors visits, medical accessories, and the million other things that go along with have a wheelchair bound child mean that our 2 other kids don’t get to do some things that their peers get to do. Take them along.
2. Borrow their van.
Being in a wheelchair means transportation is an issue. But if you want to include a disabled child, just ask to borrow the wheelchair accessible vehicle. Those vehicles have insurance just like any other. Take the kid to the movies, to ball games, anywhere you might go that a wheelchair could go but getting there is the barrier.
Lots of people at family reunions just sit around talking. Kids with disabilities can still talk, can still experience, can still laugh. They may not be able to play baseball, but they can sit with grandma and talk during the game. Ask Joshua about super heroes and just sit back and enjoy the ride. So invite and include them in as many activities as possible. Don’t worry about participating completely.
4. Don’t pity.
The last thing a child with a disability needs is pity. Give them the dignity of respect as a human being. Joshua is tiny. Not even 4 feet tall. But his mind is the mind of a 12 year old, not the mind of a 6 year old where his body is stuck.
My son’s favorite class is because someone thinks he’s awesome. His second favorite is because he gets to be with other kids. So consider including a disable child, or his siblings, in your activities this summer.
Please share this, and share your ideas as well. We need to learn from each other.
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