By Julie Mack | Kalamazoo Gazette
jmack1@mlive.com
MATTAWAN, MI -- It's afternoon practice for the Mattawan High School tennis team, and junior varsity coach Steve Norton sends off four kids to play a doubles match.
Three of the boys stroll over to the court. The fourth, sophomore Caleb Janssen, makes his way in a wheelchair.
Soon, the four are taking turns whacking the ball over the net.
No mention is made of Caleb's disability, or the accommodations that allow him to play tennis with able-bodied teens.
And although one player uses a wheelchair, it's a fairly typical tennis match. All four make some difficult shots, including Caleb. All four, including Caleb, make some obvious flubs.
In fact, while Norton and varsity tennis coach Dave Breithaupt are struck by the novelty of a kid in a wheelchair on the tennis team -- the first in his 19 years, Breithaupt says -- the players themselves are nonchalant.
They've grown up with Caleb, who has attended Mattawan schools since kindergarten. They largely see him the way he sees himself: A 15-year-old who is "physical, competitive, outgoing"; a boy who likes sports, hates math and talks too much in class.
True to form, on this particular afternoon, Caleb is the chattiest one on the court. Defaulting on a serve, he acknowledges matter-of-factly to his teammates: "That did not go so well. Not whatsoever." Straining to make a shot that his partner could have made easier, Caleb shakes his head. "I got greedy," he says. "I got very greedy."
When his partner blows a play and mutters, "I got too aggressive," Caleb shrugs it off.
"That's all right," Caleb says. "I'm always aggressive."
Spina bifida
Caleb has spina bifida, a condition where the central nervous system fails to develop properly in utero. The birth defect spans a wide range of outcomes, from minimal impact -- rock singer John Mellencamp has spina bifida -- to profound mental and physical disability.
In Caleb's case, spina bifida has left his legs paralyzed. He also has only one working kidney and requires a shunt to keep fluid from building up in his brain. The latter condition, called hydropcephalus, is linked to a higher risk of Attention Deficit Disorder and learning disabilities that can affect reading comprehension and math skills.
Although the lifespan and prognosis for people with spina bifida has improved considerably over the past half-century, the number of babies born with the condition has gone down.
One reason is that prenatal vitamins now include folic acid, which reduces the risk of neural tube defects, including spina bifida. Another is that spina bifida can be detected during the pregnancy, which means some such pregnancies are terminated. In 2010, 48 babies in Michigan were born with spina bifida with hydrocephalus.
Caleb is the oldest of Eric and Christine Janssen's two sons. Christine Janssen said that Caleb's condition was first detected during an ultrasound when she was pregnant.
"I had no thoughts that anything was wrong," she said. "I was getting an ultrasound to find out the sex of the baby."
Terminating the pregnancy was mentioned, she said, "but it was never even an option" for the Janssens.
Since then, the Janssens have tried to strike a balance between acknowledging Caleb's special needs and keeping his life as normal as possible. For instance, Caleb recently obtained his learner's permit for driving a car and uses a family vehicle with hand controls for the gas and brake levers.
"We try not to let that define him," Christine Janssen said about Caleb's disability. "He's in a wheelchair, but he still needs to toe the line."
One challenge is providing Caleb with the physical activities that he craves. Caleb "loves sports," Christine Janssen said. "He's a very sports-oriented kid."
As a elementary school student, Caleb played Little League, and was profiled in a 2006 Kalamazoo Gazette story. In more recent years, he has played tennis and sled hockey with other adolescents in wheelchairs, although those activities have required regular treks to Grand Rapids.
"There aren't a lot of opportunities for kids in wheelchairs in Kalamazoo," Christine Janssen said.
Last year, as a Mattawan freshman, Christine Janssen insisted that Caleb join at least one school organization and he became part of the Mattawan Marching Band, playing the percussion instruments that remain stationary during the marching routines.
But he longed to play high school sports. Football and baseball were immediately ruled out. Because he has only one functioning kidney, Caleb said, contact sports where he would get knocked out of his chair on a frequent basis were just too dangerous.
But tennis? It's a game that Caleb has played for years, albeit in a league for wheelchair kids. And Breithaupt was more than willing to give it a try.
Christine Janssen said she's proud of Caleb for making the move.
"It takes a lot of courage to call a coach and say, 'I want to play tennis and I'm in a wheelchair,' " she said. "It was a proud moment."
Staying positive
Caleb clearly likes being on the tennis team, saying it feeds his competitive juices.
"I've very competitive," he said. "I don't take kindly to losing at all."
He also likes the social aspect of being on a high school sports team. "I'm a social person," he said. "I can't go too long without talking to someone. My teachers always say I talk too much in class."
There are some minor accommodations made that allow Caleb to compete in tennis. The biggest is Caleb is allowed two bounces before he has to hit the ball. Also, he normally plays in doubles matches, which allows him to be paired with a able-bodied partner who can help him cover the court.
It turns out that Caleb is not the only teen with a wheelchair playing high school tennis this year in southwest Michigan. There also is such a player at Lakeshore High School in Berrien County, and he and Caleb had a singles match earlier this month when the two schools had a meet.
Meanwhile, Breithaupt said he enjoys having Caleb on the team, and that he's been an inspiration to the other players.
"It's almost as good of an experience for his teammates as it is for Caleb," Breithaupt said. "It benefits everybody."
For one thing, Caleb serves as a role model in overcoming life's obstacles, Breithaupt said.
"Caleb is very positive" about the challenges he faces, Breithaupt said. "I give him a lot of credit."
All that said, Christine Janssen doesn't underplay the impact of Caleb's disability on his life.
"Sometimes, people can't look past the wheelchair, and sometimes Caleb can't either," she said.
She praises Mattawan teachers and administrators for accommodating Caleb's needs, but she also says that Caleb's disability can interfere with his interactions with others, both adults and children.
One problem is people who treat Caleb with excessive kindness versus treating him as a typical kid, she said. At the other end of the spectrum, there have been times when Caleb has been teased or bullied.
And there is the obvious issue of being a competitive, sports-hungry 15-year-old boy in a wheelchair.
"Caleb would give anything if he could walk," his mother said.
But playing high school tennis is yet another way that Caleb "has proven that all he has to do is try" to find ways to overcome his disability, Christine Janssen said.
"We don't really don't know what the future holds. But all he has to do is try."
School
Compared to sports, Caleb is much less gung-ho about schoolwork, although he says he enjoys Mattawan High School.
Like his experience on the tennis team, minor accommodations are made to address Caleb's disability during the school day. He leaves classes a little early to get his wheelchair down the hall and to an elevator before the halls get too crowded. He has a caseworker, Wilma Butler, a Mattawan special education and English teacher, who makes sure that Caleb's needs are addressed and that he stays on track academically.
On a recent Thursday, Caleb was in geometry, his final class of the day.
Teacher Ben Tomlinson had students working in groups, and Caleb chatted easily with several other students as they filled out their worksheets. Conversation drifted from geometry to the contents of a girl's purse to memories of playing basketball during middle school recess.
A reporter asked the other boys at the table for a few adjectives to describe Caleb.
"Definitely outgoing," said Shane McBride, a sophomore who has known Caleb since kindergarten. "Friendly. Awesome."
"Amazing and awesome," agreed Jeremy Smith, a Mattawan junior.
"Awesome?" Caleb laughed. "Don't be a suck up."
"No, you're legitimately awesome," Jeremy replied. "You're really easy to talk to. You're really funny."
Asked how Caleb's disability impacts students' perceptions of him, Jeremy looked perplexed.
"I've never thought of him as being different," Jeremy said. "He's just another Caleb."