Friday, August 5, 2011

Reaching beyond limits

When we raise children, we often have certain expectations. We expect them to be healthy, we expect them to be happy, we expect them to be like most other normal kids on the block.

We don’t expect them to be disabled, a factor that alters the rules of the game.

And so when our expectations aren’t met, we go through a sense of loss, a sense of depression, a sense of why me, why us, why her? But once you get through the murky waters, we often discover that certain rewards await in this journey as we try to find strategies to cope with modified expectations.

July brought one such reward.

Over the winter, I researched different programs for Grace to join. She had done Scouts, art lessons, running races. None stuck. She was in the midst of Parkettes, but I didn’t want to be inside the humid facility over the summer. I stumbled upon a small local swim team, the Macungie Bears. She doesn’t like high-pressure situations, but I broached the idea with her. I showed her team pictures online, talked about how fun it would be being a Bear.

“I won’t wear a cap.”

“I don’t want to race anyone.”

“I only swim underwater.”

I silently nodded. Without much discussion, we signed up one evening in April. We shelled out more money than I wished. I secretly began to regret it, figuring I just donated three Benjamins to a non-profit. She'd spurn this, as she promised.

But the weeks passed, and soon enough, practice for the experienced kids started in early June. She didn’t need to report for duty until the month’s end, after school had ended. We didn't discuss it. I just kind of took her. The first day, she cried, quietly protesting. Her anxiety was winning. But I assured her that I would wait on a nearby bench while she joined the 7 other kids as “cubs,” inexperienced Bears not yet ready for prime-time competition.

Give it a day, kid, I asked.

That first morning, under the guidance of Coach Sue, she learned freestyle. The second, breaststroke. The third, backstroke. It all seemed very natural to her. By the fourth day, the coach got her on the diving block. I cringed. She had never dove before. But there she went. It was mostly a belly flop, but she was fearless. I watched as she not only kept up with the other kids, she swam faster than most of them.

After practice, the coach pulled Grace to the side to talk. Soon, Grace ran over to me: “Coach Sue wants to talk to you.” I thought it’d be bad news: Grace wasn’t listening, she needs to practice more; maybe she needs lessons. So I trudged over.

“She’s ready for her first meet,” Coach Sue said.


“Yep, let’s get her in next week, freestyle and backstroke.”

My jaw literally fell open.

“You cannot be serious.” I shook my head.

“I am.”

“You need to know: she’s autism spectrum. She may not handle this very well.”

The coach seemed surprised: “Really? I teach special ed. I can’t even tell. She just fits in so naturally.”

After she left, I had to convince Grace that “racing” would be fine. She didn’t think so. I had to throw out a hook: “I’ll give you five dollars for every swim meet.” She bit.

The next week, we found ourselves in Quakertown, trying to figure out how this whole swim meet thing was going to work for her. I hadn’t been to one in years since Andrew was the last competitive swimmer in our family. It surely would be different with her.

At the meet, she found the interaction with her teammates to be socially awkward, a characteristic of the autistic. She needed to hang with family. She needed reassurance. She needed to see us throughout the event. She needed reminding of what to do and when.

But when it came time to go, she went.

She was last off the block because, well, she didn’t quite get the whole concept of “go.” The fact that she was racing did not sink in. Still, as we yelled and cried tears of joy, she reached and reached, pulling up from 8th place faster and faster as we ran down the side of the pool. Thirty seconds later, she came in third. Had that pool been one meter longer, she would’ve won 25-meter backstroke.

It wasn’t the last time she came from behind.

She continued to place at other meets, taking some firsts and seconds in various strokes. The coup of the season was that, in her first race in Quakertown, she swam fast enough in backstroke to qualify for “Best of the Best,” the suburban league’s district championships.

Who knew that the cub had it in her, beating out girls who had already been on the team in previous years, whose parents spent money on private lessons since they were four?

Still, the truth was that she didn’t want to go championships. She fought the idea and told the coaches she wouldn’t compete. She couldn't face the pressure. She worried about being last. However, I wasn’t going to accept her answer; I knew that all she needed was reassurance. “She’s going,” I quietly mouthed. “Put her down.”

The hook? Ten bucks and a large soft-serve twist.

When championships arrived two weeks later, we didn’t care how well she swam. She could’ve been last. For us, the fact that within a month she overcame some fears, pushed aside her anxieties, and kicked self-doubts to the curb made everything worth it.

As she waited for her heat, I sat in the bleachers and silently wept behind my sunglasses. Kids from her team yelled her name. Coach Sue called to her. Coach Phil rubbed her shoulders, gave her a thumbs-up and a high-five before she plopped into Lane 5 and cued up under the block.

After the gun sounded, she was far behind. Dead last again. But like before, she motored on--reaching, reaching--and ended up in third, missing second in her heat by a half stroke. It didn’t matter.

She did what she needed to do: earn 10 bucks, score some ice cream, and be proud of what she can do.

She was still a champion.

As Emerson wrote: “The reward of a thing well done is to have done it.” We will do as much as we can to help her discover not only who she is, but experience the rewards of reaching beyond the imaginary limits placed before her. My hope is that every child with a label can enjoy such moments.

Thursday, August 4, 2011

Butterfly moment

The Jersey Shore premieres its fourth season tonight.

I don’t know this from personal obsession. I know this from all of the Facebook posts provided from former students and from my niece—a stunning little sweetheart who shouldn’t be watching such brain poison. But there was one post on the social network that stood out. It came from Ryan, a former student who graduated years ago. He’s creative, introspective, outgoing. And he isn’t afraid to say it like it is, and never was.

Ryan took a risk and wrote something a tad critical of people who are absolutely consumed with the show, people who schedule vacations around dime-store celebrities with two-can ‘do’s and fake bakes. Well, people attacked him, called him a hater. The list of comments was pretty long.

But his honesty gave me a glimmer of hope that not all twenty-somethings are wasting away their lives with this Jersey circus. Maybe some realize that life is invaluable when you’re 20. It’s a time when you aren’t burdened with a laundry list of responsibilities, that before you settle down with a partner, with kids, with a mortgage, that you shouldn’t be at home tied to cable.

You should be living.

Later, I headed to Wawa to get gas and coffee. And while there, Snow Patrol’s "Chasing Cars" came on. Of course, this is the song that makes me think of Tyler, who was friends with Ryan. I wondered what he would think about people’s fascination with the clowns. And, as I had written to Ryan, I thought that maybe I have no idea about what Tyler would think. But in my mind, I can only imagine him telling people to live their own lives, to not experience it through the exploits of others.

And then suddenly, as I began to well up with the thought of Tyler in his coffin—a confining end before being set free—a yellow Monarch butterfly came out of nowhere and landed on the window of my car, right in front of me. It flapped its wings, turned—almost as if it looked at me—and then flew off into a grey-filled sunset.