by Ben Mattlin
When I was a wheelchair-using kid, yearround accessible programs to enhance my life and wellbeing were scarce at best. The few that did exist
felt patronizing, uninspired and uninspiring.
But a lot has changed since then. Nowadays, no matter where you are or what time of year it is, there’s a broad
variety of innovative wheelchair- and kid-friendly programs that are anything but boring. Whether your child wants to participate
in extreme sports, have adventures in the wilderness, master academic challenges or achieve new skills to build self-esteem,
there are multiple opportunities out there. Better still, most are surprisingly affordable—even free.
Here’s a sample of what’s out there, as recommended by kids who enjoy them—and their parents.
Extreme Sports
Everyone has heard of wheelchair basketball (more about that later), but can a kid in a chair go surfing? Yes, definitely,
says Jesse Billauer, a lifelong surfer who in 1996 sustained a C6 spinal cord injury on the waves while a student at Malibu
High School. That didn’t dissuade
him from taking to the surf again, and spreading the word. “Jesse’s message is to live life to the fullest,”
says Traci Harden, program director of the Life Rolls On Foundation, a San Diego-based nonprofit. Billauer launched the group
in 1999 to promote surfing and other extreme sports, such as motocross, for young people with disabilities.
If
you don’t believe it’s possible for para- and quadriplegics to surf, go to one of Life Rolls On’s periodic
demonstrations, such as the recent They Will Surf Again event in Malibu—or rent the surfing documentary, Step into Liquid.
“We
saw the movie, and I thought, ‘Oh my gosh, that is really cool!’” says Jennifer Kayler, referring to a scene
in which Billauer surfs by lying down on a surfboard. A few weeks later, Kayler took her son, Patrick Ivison, a C4 quad, to
a demonstration of adaptive surfing techniques. “We just came to watch them do it,” Kayler recalls. But then one
of the volunteers offered to take Patrick, then 8 years old, out into the water. “The next thing I knew, he was out
there on the board doing it,” says Kayler. “It was great! He’s been going out ever since.”
Patrick,
now 10, agrees. “It’s really fun,” he explains. “It feels like you’re flying.”
Patrick uses a wave-ski, a combination surfboard and kayak with two sets of loops to put his legs through. Gene, a
volunteer who’s become a close family friend, sits behind Patrick, who wears a life jacket but no seat belt or additional
support. “He doesn’t get strapped in because if the board flipped over, it’d be too hard to get him back out,” says Kayler. “His knees go
under the strap-loops, and there’s sticky stuff underneath so he doesn’t slide around. Gene paddles them out,
and they ride the waves back in together.”
Kayler admits feeling “a little nervous” at first. Once, when the waves were too choppy, Patrick’s
wave-ski flipped over. “He got dumped pretty hard, but went right back out there,” his mother says. “I was
worried he’d become afraid and not want to do it again, even though he was having so much fun, but he didn’t.
He’s a pretty cool kid.”
Life Rolls On doesn’t train kids to be surfers, however. It sponsors “events to raise awareness,”
says Harden. Though the surfing events it sponsors are free, the organization also raises money to fund research for the treatment
and cure of paralysis caused by SCI. At programs such as They Will Surf Again, co-run by an independent nonprofit group of the same name, all of the equipment
is donated and all personnel are volunteers, including veteran wave-riding experts and lifeguards. No prior surfing experience
is necessary to participate. Each event is a consciousnessraising celebration where “injured athletes from around the
country gather together to try some surfing,” says Harden.
Kayler agrees. “It’s very informal. No training process, no lessons involved. You just go out there and
enjoy.”
The surfing excitement is infectious— though for landlubbers, beach wheelchairs are available. “It’s
one of those sports we assumed wasn’t available to people in chairs,” says Kayler. “For Patrick, it just
shows that there isn’t anything he can’t do!”
Kowabunga!
Integrated Basketball
For those whose tastes run toward more traditional sports, the Bay Area Outreach & Recreation Program (BORP), in
Berkeley, Calif., has an innovative approach. At its Thursday evening wheelchair basketball competitions, kids in wheelchairs
play with (or against) their nondisabled friends and relatives who have to sit in wheelchairs to join in. “We’ve
established a place where friends with disabilities bring their friends who don’t have disabilities, and vice versa,”
explains executive director Rick Spittler, “and everybody can play together, all using wheelchairs. We take all comers.”
The unusual concept of having kids without disabilities learn to adapt to a wheelchair sport applies to other BORP programs as well. For instance,
BORP also hosts power chair soccer. It supplies an oversized soccer ball and bumper guards that attach to the fronts of motorized
chairs (typically, going over the footrests) to enhance ballhandling and protect the wheelchairs. Nondisabled kids can play,
but they have to learn to use a power chair.
BORP has a fleet of sports chairs to lend for basketball, though it doesn’t keep a supply of power chairs. “Most
of our wheelchair athletes borrow our sports chairs too,” Spittler points out, adding that sports chairs are lighter,
quicker and more maneuverable than standard manual wheelchairs. “They’re expensive, and unless you’re really
into the sport you probably don’t have that kind of cash to lay out for a second chair. So we supply chairs whether
you have a disability or not.”
Do the kids who are used to handling wheelchairs have an advantage? Sometimes, at least at first. Nobody seems to mind.
This novel approach to wheelchair sports enables kids in chairs to meet not just their ambulatory friends eye-to-eye and spoke-to-spoke, but their parents as well.
For a voluntary contribution of $5 a person, the program “allows parents to connect with their kid on a level that they
may not otherwise get,” says Spittler. A chair user and wheelchair basketball player himself, Spittler has enjoyed shooting
hoops with his nondisabled son, now 15, for more than five years.
Outdoors
BORP also makes wilderness outings as accessible as possible. It hosts a regular schedule of hikes, camping expeditions,
even accessible skiing and whitewater rafting. “We look at the variety of outdoor activities available here in Northern
California, and try to make them accessible to kids and adults with disabilities,” Spittler says. “Our trips are
integrated, too, with a mix of ages and people with and without disabilities.”
Simple wildflower or full-moon hikes typically start at $20 per person. More adventurous excursions usually cost more.
In those cases, BORP negotiates rates with independent operators, such as accessible downhill skiing facilities. The organization
also assists families that want to plan their own outings. It can suggest camping and hiking locations, accessible transportation
companies and equipment you might need. Unfortunately, it doesn’t supply personalcare assistants, even on its hosted
journeys. “Sometimes we can, depending on our volunteer situation,” notes Spittler.
BORP’s programs run year-round.
For campers and hikers in or visiting the Midwest, another option is Wilderness Inquiry (WI). The Minneapolis-based
nonprofit organization, started in 1978 by two outdoorsmen who had worked as personal care attendants, offers a variety of
rugged wilderness adventures geared toward novices of all abilities. From hiking and canoeing day trips starting at $20 a
person to a 25-day Porcupine River canoe expedition for $2,695 per adult, WI prides itself on providing something for everyone. “From the beginning, our mission has been to get people off the
streets, from all walks of life, to experience the natural world in a safe, comfortable, integrated way,” says outreach
associate Mike Miller.
Ideal for many families with kids on wheels are WI’s family trips. These typically range from three to six days,
either setting up a new camp every night or staying in one place the whole time with different activities daily—such
as canoeing, swimming, hiking, fishing and, of course, sightseeing in nature. Groups of all sizes are led by skilled wilderness
experts familiar with the territory. Frequently more than one family goes out together, sharing
staff. The average cost per adult is $85 a day; children 16 and under are half-price. For example, a three-day canoeing trip
is $160 for adults and $80 for kids, while five nights in Yellowstone Park costs $645 per grownup, $322.50 per child.
Those prices include all necessary gear, which WI provides, though Miller recommends participants bring their own raincoats
and sleeping bags. “We give you a checklist well in advance,” he says. It’s recommended that wheelchair
users replace their standard tires with bigger mountain bike-type tires before hitting the trails. WI employees and team volunteers
are happy to help push wheelchairs up rocky slopes. The organization has even invented a type of harness that attaches to
the front of a manual wheelchair to allow tour guides to pull the chairs uphill rather than push from behind. Other types
of assistance might be available as well, though for toileting and dressing, it’s probably better to bring your own
helper.
Wilderness excursions run year-round, but Miller says June through September is the busiest season so make reservations
early. WI also runs Access Outdoors, a consultancy service for people and organizations attempting similar endeavors in other
locations.
Achievement/Academic-oriented
Life isn’t all sports and outdoor activities, however. For kids who are having a tough time getting their schools
to accommodate their disabilities, other programs can help. One that’s succeeding with a groundbreaking approach is
the Bridge School, in Hillsborough, Calif., which targets kids with multiple disabilities.
Pegi Young’s son Ben has both mobility and communication impairments because of cerebral palsy. Together with
Jim Forderer, another frustrated parent of a child with multiple disabilities, and Marilyn Buzolich, a speech pathologist,
Young helped launch the Bridge School in 1987. At first it had just four elementary-school students. Now it serves 14 children
in its education program, plus another 25 students in a transition program that helps place them in elementary and secondary
schools
and
colleges. “The purpose of the education program is to provide an intensive and extensive assessment of the children,”
explains Dr. Vicki R. Casella, executive director of the Bridge School. A former professor of special education at San Francisco
State University, Casella has been involved in the field for more than 40 years.
Assessment—identifying each child’s communication and education needs, what equipment or other interventions
are best suited to empower the child, and any additional modifications necessary to ensure a successful return to the classroom—is
the first step. But the Bridge School’s services don’t end there. “It became obvious that many of the children
returning to their home school districts required extended support,” says Casella. So a transition program was started
to match kids with the most appropriate education setting available, work with parents and school district officials, train
educators, and maintain long-term support throughout the child’s schooling.
For many people, what makes the Bridge School unique is its comprehensiveness. Its full-time staff are experts in special education, language pathology, assistive
technology, occupational therapy and art and movement therapy. “We’re located on the grounds of a public elementary
school,” Casella adds, “and we’re able to provide inclusion experiences for every child. ... Children stay
at the Bridge School until we’re confident that they can be successful in their home school districts.”
And what do the kids get out of it? “Independence,” answers Julie Bello, a mom in Canby, Ore., about 30 miles south of Portland.
Her daughter Natasha, a power wheelchair user who is visually impaired and communicates via computer, first attended the Bridge
School when she was 10. It was “the first time she stayed away from Mom and Dad for any length of time,” Natasha’s
mother recalls. “She was so quick to get us to leave her alone with the counselors, and it was so neat for her to be
around other augmentative or alternative communication (AAC) users. It was the first time she had seen other kids talk like
her!”
Bello knows of no other education-oriented program that’s as geared to AAC users or provides such comprehensive
services. Many special-ed teachers, she contends, “don’t realize how much these students can achieve with the
right tools.”
The Bridge School also provides information, resources and referrals to families and educators worldwide. Occasional
open labs “encourage families from the community to learn about assistive technology by experiencing it firsthand,”
says Casella. Bridge School students are typically funded by their home school district, but contracts are negotiated annually.
Scholarships are also available. “Giving children the opportunity to have a voice, and the capacity to have that voice
be heard, and alerting the public to the fact that these children have something important to say, are the most important
functions we serve,” Casella says.
Building Self-Esteem
All parents want their kids to feel good about themselves. But it can be especially challenging to imbue a healthy
sense of self-esteem
in a kid who is—or more importantly, who feels—different. It’s a lonely feeling. Sometimes the isolation is the worst thing about
being a kid on wheels. Even if your child is in an integrated school, there might be no one else around who really understands
what life on wheels is like.
It was exactly that type of problem that three moms in the San Diego area—Cherilynn Benton, Lauren Albo and Carye
Lynn—sought to solve when they launched Wheelie Cool Kids in 2004. “Our group loves to plan monthly events for
parents and children to get together,” says Benton. “We have no enrollment. You can sign up for our e-mail or
phone list—whatever is best for you—and then you’re stuck with us!”
Recent outings have included a trip to Disneyland (co-founder Carye works there), a picnic in a local park and a tea
party. “We take our kids everywhere and do everything,” says Benton. “We believe in treating our children
with disabilities just like any other children.”
The group now includes about 20 parents, and Benton hopes the roster will keep growing. She stresses that no one is
ever excluded. Though most of the kids so far tend to be under 10, there’s no reason that couldn’t change. Their
disabilities range from “minor to large,” she says, and nondisabled siblings are encouraged to participate, too.
Tara Dilliplaine, mother of 4-year-old Brooke, who is a developmentally delayed wheelchair-user with epilepsy, found
out about the group through Brooke’s therapy sessions. “This is a small group, but it’s a very welcoming
group,” Dilliplaine says. “It’s not limited to children in wheelchairs. It’s open for all special
needs ... anyone is welcome to join. As far as accessibility, there are activities planned at different times and on different
days, so it’s whenever your schedule allows you to participate.”
Dilliplaine also likes the friendly monthly newsletters. Each issue highlights an individual child. Connecting with
these other children and their families is “an uplifting experience,” she says. “They understand me and our situation. We don’t have to explain
anything, and our children are accepted for who they are. Everyone supports each other and helps each other in any way they
can.”
As for what Brooke and the other kids get out of it, Dilliplaine can only assume. “Brooke has no communication
at this time,” says her mother. “I know she enjoys the company of her friends.” The value of this interaction
is hard to quantify. Parents exchange information and war stories. “We share therapy ideas and equipment. ... A lot
of our support is in regard to services that are available—what we, as parents, can fight for,” Dilliplaine says.
“We also like to help out other families when their children are in the hospital.”
Besides such practical matters, what’s perhaps most important to Dilliplaine is the emotional support and morale
boosting that occurs naturally. “I’m grateful my friends started the group because it’s been very inspiring,”
she says.
Whatever the importance to its members, the Wheelie Cool Kids network operates on a simple, voluntary system that could
be replicated almost anywhere. All it takes it is a bit of initiative and determination. The rest seems to take care of itself.
“We want to make some happy faces even happier,” affirms Benton.
Ben Mattlin is a Los Angeles-based freelance writer.
