17 July 2008

If this kid doesn't make you smile, you probably need your own day

Assisated Walk Challenge

Mayor Susan E. Low proclaimed Wednesday as "Ben Spengel Day" in McHenry, and Ben Spengel is having quite the day. The 11-year-old arrives at camp in the morning to cheers, a feast of "Ben Spengel Day Cupcakes"and the presentation of a special "Ben Spengel Day" T-shirt. And now he is poised at the starting line for the inaugural "Assisted Walk Challenge" - or as he calls it, "a race for people like me."

Born with spastic diplegia, the most common form of cerebral palsy, Ben has been in physical therapy since he was 10 months old. His muscles are weak and tight. Parents Keith and Trish Spengel, a former Daily Herald reporter and old friend, advocate and fight to make the world better for Ben, while they push, prod and encourage Ben to be the best he can be. The boy still uses a wheelchair for long trips, but Ben prefers arm crutches or his walker. His little brother Dane, 8, has the body of a natural athlete.

"Ben has so much desire and really can't compete physically," Trish Spengel says.

As Dane played baseball, soccer, basketball, golf and other sports, Ben cheered for his brother and served as equipment manager. But watching his little brother effortlessly play the games Ben would give anything to play took its toll on the older brother.

"When my brother quit baseball, I had a fit," Ben says, sheepishly grinning at the memory of his whining. "Mom gave me a pep talk, telling me to concentrate on what I can do."

She told Ben to live his life, not his brother's.

"Figure out what you can do, and then just work really hard at being really good," Trish told Ben.

"A few weeks later, he came up and said, 'I think McHenry should have a wheelchair race,'" the mom recalls. "He came up with a plan, real detailed, like where the concession stand should be."

While shopping at Wal-Mart, Spengel ran into Low. Ben told her about his idea of adding the Assisted Walk Challenge to the city's annual Fiesta Days' track and field meet.

"We met and we talked, and he told me what he was thinking and what his idea was," says Low, who was a special-education teacher for 33 years before she became mayor. "I hoped he would take it on and make it his own. After meeting him for five minutes, I knew that he could. He's amazing."

The mayor inspired him.

"So I basically got right on it," Ben says, admitting that he did watch one TV show first. At home on the computer, where he is anyone's equal and then some, Ben typed up his outline, brought his proposal to an agreeable city council and the Assisted Walk Challenge went from dream to reality.

"I love to see that he took it upon himself to create some of his own opportunities," says Brian Shahinian, executive director of the Northern Illinois Special Recreation Association, which provides 500 programs that serve 1,300 people throughout McHenry and parts of Kane, Lake and Cook counties. "It really serves as a great example. We give credit to him and his family. Those are the kinds of skills NISRA is looking to develop in all the people we serve."

"He has guts. That's for sure," Low says. "Their whole family is so inspiring."

Working with Pattie Lunkenheimer, athletic program coordinator for McHenry Parks and Recreation, Ben got his events (a 25-meter race, a relay, a softball throw and discus toss) on Wednesday's schedule, for kids, ages 6 through 14, who use crutches, walkers, canes or wheelchairs.

On June 5, his 11th birthday, Ben made a presentation at his Chaucey Duker School, winning cheers with his affirmation about how "we can cheer each other on."

The most incredible thing was when he asked me to his school and I watched him stand up before his entire fourth grade and gave a speech. That's hard for adults to do," Low says.

"As you've probably seen, it's not that easy for me to get around or compete in sports," Ben told his classmates. "But that doesn't mean I don't want to."

An energetic Cub Scout, Ben smiles all the time, and laughs when he's nervous.

"He's pretty fun. People seem to really like him," Trish Spengel says, noting how Ben gets along with kids from his school, as well as enjoying a great relationship with his brother. "They're not just accepting. They're friends."

Usually the beneficiary of his brother's cheers, Dane roots for his brother on this day.

"I'm excited because he worked really hard on this, and I'm really proud of him," Dane says.

Ben's smile and personality leap through barriers his body cannot. He's quite the ham on a video at nisra.org. At his day camp, counselors who realized how much Ben longed to play baseball invented a similar game using a tennis racket as a bat. They call it "Bennis."

Now, Ben's got his own day. He changed a small part of the world by adding "people like me" to a suburban festival.

"This was missing," Low says of the Assisted Walk Challenge. "Now it's not missing. That's the part I think is so cool."

The starter's pistol fires. The race begins. Ben rumbles forward on his four-wheeled walker as he and Kaleigh Rogers, 10, of Wonder Lake, smile all the way to the finish line.

The thrill of victory is "just to be able to participate," Lunkenheimer says.

"Thank you for participating," an out-of-breath Ben tells Kaleigh.

They are competing.

They are athletes.

Ben Spengel has had quite a Ben Spengel Day.

"I'm not asking for this," Ben says quietly, "but I'm just wondering: Is it Ben Spengel Day every year or just this once?"

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