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thedrifter
06-15-08, 08:52 AM
chicagotribune.com
Father and son: 'He's my posse,' in sky and in life
Despite Down syndrome, son jumps at any chance to follow his dad

By Josh Noel

Tribune reporter

June 15, 2008


Like his father, Casey Deegan keeps his watch on military time. He has a tattoo. And he answers his cell phone with the same clipped greeting: "Deegan."

At 32, Casey is the oldest of five siblings and the only one still living under his father's Naperville roof.

He reads at a 5-year-old's level. He once asked his dad whether Santa and the Easter Bunny know each other. And when he grows up, he plans to play center field for the White Sox.

"They probably would take me," he says in blunt syllables.

Mike Deegan, 54, doesn't correct his son. When your adult child has Down syndrome, you focus on what's important. Like every other Saturday, they get Casey's hair cut by the same barber—always high and tight. When Mike runs a 5-kilometer race, Casey is in the pack, though usually at the back. They volunteer together 10 times each summer to sell roasted corn at festivals for a Marine Corps organization.

"He's my posse," Mike Deegan says. "I don't go anywhere without him."

So when Mike started sky-diving every free weekend two years ago, Casey went along, if only to eat hamburgers, chat with the jumpers or offer to hang up flight suits for the prettiest women sky-diving that day.

But then, like so many times before, he decided he wanted to be like his dad.

Beating the odds
When Casey was 2 weeks old, Mike Deegan sat in the front pew of the hospital chapel and asked God to take the boy. Deegan was 22, fresh out of the Marines and married to his high school sweetheart. The child was their first.

Casey was already in for his second surgery, and doctors said he would never walk or talk. In the chapel Deegan told himself his son would know no quality of life, and if God heeded his prayer he and his wife would try again. It might be best for everyone.

Today Casey Deegan is an athletically rounded 5-foot-3, with ruddy skin and narrow, dark-blue eyes. He lives with his father and stepmother in a tidy two-story house and craves habit.

In his white-carpeted second-floor bedroom, his country music CDs are grouped by artist. His sports memorabilia is carefully arranged across bookcases, walls and shelves. He makes his twin bed every morning and beside it lays his TV remote, watch, Swiss Army knife and nail clipper.

Across the room, on his dresser, three bottles of cologne sit near his Jewel name tag—"Casey D."—where he has affixed the pins recognizing his nine, 10 and 11 years of service bagging groceries and rounding up carts. He eagerly awaits the 12-year pin.

Mike Deegan's relationship with Casey is more like what he expected to have with a grandchild, but they sometimes talk seriously. Like when Mike asks who Casey knows with Down syndrome. Casey names four friends whom Mike confirms have the cognitive disability.

"Do you have Down syndrome?" he asks.

Casey nods.

"What does it mean to have Down syndrome?"

"Down syndrome means you make new friends," Casey says.

Mike also teases him freely, as he would any of his children. Like when they discuss Casey's Special Olympics career and tick off the sports in which he has competed: track, softball, swimming and weightlifting.

"How about ballet?" Mike asks.

"Not ballet, Dad," Casey says. "Don't go there."

Not too long ago, weekends at the Deegan household were reserved for visits to the coffee shop, church and household chores. But after his daughters gave Mike a gift certificate to Skydive Chicago for Father's Day two years ago, Mike Deegan quickly became addicted to leaping from an airplane at 13,500 feet, when the earth below is just a hazy patchwork of greens and browns. He's now made more than 240 jumps.

When Casey asked two summers ago if he could jump, too, the question was not completely unexpected.

Casey only started riding a bike after he saw his sisters do it. When they got driver's licenses, he wanted one too. (They compromised with a state identification card.) Five years ago, after ample pestering, his father agreed to let Casey get a tattoo on his upper right arm—an eagle clutching a banner with his name. Mike has four tattoos, mostly from his Marine days.

"Usually what's in front of Casey's face is what you hear about," Mike says.

Friends in high places
His first reaction to his son's request to go tumbling from an airplane: No way.

But then Mike remembered a story in a sky-diving magazine about a woman with Down syndrome named Kathy Kirkpatrick who jumped near Austin, Texas. Mike Deegan called 13 Kirkpatricks in the Austin area before he found the right family, and quickly found common ground.

When Kathy was born in 1959, a University of Michigan doctor told her parents to have her institutionalized and "forget she was ever born," says her father, George, 77.

Now 48, Kathy reads almost at the 4th-grade level, bowls, paints and "asks 100 questions a day on anything," says her mother, Janet. Two years ago she announced she wanted to sky-dive. The Kirkpatricks never hesitated.

"One mother of a Down syndrome girl said, 'How could you let her do that?' " Janet Kirkpatrick, 73, says. "I imagine people would think she can't make up her own mind to do that, but I feel strongly she can."

They told Mike to let Casey jump.

The strongest voice against the idea was Casey's mother, Peggy Dispenziere, who lives in Las Vegas and talks to Casey most days. She says she worried her son would hurt himself, but not because he has Down syndrome.

"The concerns I had for him I'd have for all my daughters too," Dispenziere says. "We never treated him different. He grew up with expectations just like our daughters had expectations."

Mike told his ex-wife that her objection was noted but that Casey would jump anyway. So she wouldn't be a wreck, Mike wouldn't tell her exactly when the jump would be until it was done.

It came May 19, 2007—a bright, 80-degree day.

Casey's tandem master was Scott Ayer, 42, a shaggy-haired electrician who works weekends at Skydive Chicago, jumping as many as 12 times a day with rookies attached to the front of his jumpsuit. He also is the Deegans' neighbor and has known the family for about five years.

Tandem masters at Skydive Chicago have jumped with people with an array of disabilities, including blindness and paraplegia, but never someone with Down syndrome.

First, Casey rode along as an observer, sitting in the co-pilot's seat as the plane ascended, dropped jumpers and landed. That went fine.

Then it was time for Casey's first jump. Tentative and stiff, he told Ayer he was scared. Ayer gave Casey his standard reply—"Turn that fear into fun"—and tried to distract him with promises of amazing cloud views.

And down they went, free-falling at 120 miles per hour. As Casey's face flapped in the furious air, he flexed and smiled for a videographer, repeatedly giving two thumbs up. Ideally, students read the altimeter on their wrist and pull the cord on the tandem master's hip at 5,500 feet—after a minute of dizzying free-fall. But Casey was oblivious, and Ayer had to pull the cord.

On the ground, Casey called his mom, talking so fast she could barely understand him. "He was so happy," she says. "And his dad was happy too. He was proud."

Casey watched the video of his jump twice a week for the next year.

Boundless joy
It's difficult to get Casey to explain why he likes sky-diving. "I like it," he'll say. Or: "It's cool."

Occasionally he can be prodded into answers, but even those are hazy.

"I like it because I have butterflies in my tummy," he says. "I like baseball, but it doesn't give me butterflies."

Even his family struggles to understand it.

"You can spend a lot of time trying to dig through his head," his father says. "My view of it—I don't know if it's his view—is it's normalcy. He knows he's different. This is his way of being normal, or a different way of being special."

His mother still wonders.

"I've asked him and he doesn't really say why," she says. "I think it's because his dad does it."

Casey's jump total is up to 10—all with his dad in the same group—and most have been without incident. Once, confused either by the altimeter strapped to his left wrist or by Ayer's commands, he pulled the chute at 8,500 feet—about 3,000 feet too soon. The only consequence was an unusually long float to earth. But an unexpected chute opening could be trouble for anyone above them, so Casey and Ayer are always last to leave the plane.

Still, because Casey listens, Ayer ranks him as a better-than-average student.

"Before I jumped with him, I'm thinking if 25 percent of the people freak out, he will be part of the 25 percent because he has Down syndrome," Ayer says. "I won't judge people like that again."

Casey routinely reads his altimeter every few seconds now when falling madly and usually pulls the cord on Ayer's hip at 5,500 feet—right on time. After jumping, he begs his dad to go again. Mike usually laughs and tells Casey once is enough.

"I think it's a permanent part of his life as long as I'm doing it," Mike Deegan says.

Weather-permitting, they will be out on Father's Day.

jbnoel@tribune.com

Ellie