Tuesday, October 21, 2008

Capacities and Capabilities

A strange thing about Jordan—or maybe the least strange thing about him—is that whatever people think he isn’t capable of doing is what he wants to excel at. He was born with multiple orthopedic issues such as dislocated hips, a dislocated knee, club feet, and the ability to only move one of his toes (the big toe on his left foot). He walks with a walker or forearm crutches (we call them “ski poles), and he wears braces.

He is very smart and verbal and always has been. But what he wants to excel in are physical things. He throws himself around, he fights with swords, he does stunts on his walker. He is already planning his fifth birthday party—9 months away—as a wrestling party, more specifically, a “smackdown” party. It’s going to take me these 9 months to convince him to have a different theme!

Over the summer, we went to a birthday party for a girl in his class. It was at one of those “bouncetown” places. Right when we got there, the birthday girl’s mother came over to us and said, “There are some things over there that Jordan can play with!” pointing to the “soft play” area for infants. There were about four little foamy pillow-like things for babies to play with on the floor. “Yeah, sure,” I thought. “Just watch him.” He then went and climbed up a huge slide using only his arms, used a rope to climb up another one of the bouncy things, and truly kept up with all the other kids.

Recently when we were going through a lot of stressful things with both my husband’s and my family, it was affecting Jordan at school. He “kept to himself” in the classroom, the teacher told us. But still, out on the playground, he was the usual leader, getting his classmates to trail after him while playing “cops,” and “arresting” nearly every kid on the playground.

Last week they had a bike-a-thon at his school to benefit St. Jude’s. We brought his arm-powered Amtryke in for him to use. He needed help getting around the track, but he told us he “won” the bike-a-thon. I don't want him to be deluded about his physical skills, but I do want his confidence to last.

“I’m wiggling my toe!” he said to me the other day. That was his first acknowledgement about the movement in his toes. But the interesting thing—he didn’t say, “I can’t move nine of my toes.” It was that he can move one of them. The old clichés apply—he’s teaching me more than I’m teaching him. How am I supposed to reconcile not liking it when people say that he is “inspirational” with my own feelings that he does inspire me? He does reveal things to me every day. I feel like I'm not doing any of this; I'm just along for the ride, his loyal follower.


Lyn said...

Aw, you're all in love with that little man! And that's quite a monstrous looking inflatable thingy he's climbing!

therextras said...

Wow! Great post one-upping capabilities over disabilities. Emphasis on your son's inner drive. Thanks so much. Barbara

Terri said...

Thank you for participating in the blog carnival! Your son is doing some great things!!

Gary said...

Would you consider mentioning my newly-published memoir on your blog? I would be happy to exchange blog feeds as well.

Seven Wheelchairs: A Life beyond Polio was recently released by The University of Iowa Press.

The memoir is a history -- an American tale -- of my fifty year wheelchair journey after being struck by both bulbar and lumbar poliomyelitis after a vaccine accident in 1959. The Press says Seven Wheelchairs gives "readers the unromantic truth about life in a wheelchair, he escapes stereotypes about people with disabilities and moves toward a place where every individual is irreplaceable."

Other reviewers have called Seven Wheelchairs "sardonic and blunt," "a compelling account," and "powerful and poetic."

I hope you can mention Seven Wheelchairs on your blog. We all live different disability stories, I know, but perhaps if you find the memoir worthwhile, you might want to recommend the book to others who are curious about what polio or disability in general.

Of course, the book is also available through Amazon and Barnes & Noble.

Gary Presley www.garypresley.com
SEVEN WHEELCHAIRS: A Life beyond Polio
Fall 2008 University of Iowa Press