Teen pedals way through complicated world
Tricycle offers ideal exercise for 12th-grader, who has autism and cerebral palsy
SAN JOSE >> It took a bit of parental sorcery to lure the ever-reluctant Darshan Shah to leave his room to demonstrate the joys of riding an adult tricycle.
At first, the 12th-grader at AchieveKids school in San Jose acted as if he had been ordered to take out the garbage. Or worse, complete a weekend homework assignment.
Then he mounted the threewheeler, pedaled earnestly with eyes bright, jaws locked determinedly. In that fleeting moment, Darshan looked like a typical 17-year-old boy challenging the boundaries of the physical world.
What so many might take for granted becomes a family triumph for Hitesh and Claudia Shah whenever their son with autism and cerebral palsy per-
“His story is one of balancing what he craves and needs with the limitations his disabilities put on him.” — Claudia Shah. mother of Darshan Shah, 17, who has autism and cerebral palsy
forms a physical activity as simple as cycling.
“Left to his own devices, he would sit in his room with the drapes closed watching video,” Claudia Shah said. “That is safe.”
AchieveKids would like to buy 10 adult tricycles for their Adaptive P.E. program for students like Darshan, and is seeking $4,000 in donations through the Mercury News annual Wish Book program.
In the Shah home, family members, including Darshan’s twin Deepan, have rewritten the script of their lives to help the affable young man find his place in a world filled with clamor and chaos.
The challenges for the family have been many. Claudia Shah didn’t leave her home except to go to the grocery store for Darshan’s first eight years.
“We don’t vacation together,” she said. “We didn’t have date nights.”
The boy’s condition was diagnosed at age 3 but it wasn’t until he turned 10 that experts made it official. Deepan, a junior at Archbishop Mitty High School in San Jose, wouldn’t trade the experience with his twin despite some frustrating times.
“I have learned a lot about compassion and the caring profession,” said the teen, who plans to become an environmental scientist.
As Darshan barrels headfirst into adulthood, the Shahs hope to arm him with as many dayto-day skills as he can absorb. Riding a tricycle regularly for exercise and fun is an important piece of the complicated puzzle.
The sensation of biking can reduce anxieties that lead to anger and tantrums.
“These types of activities provide much-needed
sensory input that helps with self-regulation,” Claudia Shah said.
Darshan has learned to engage with fellow students, teachers and staff at AchieveKids, where he has overcome fears to enjoy playground activities and is on track to earn a high school graduation certificate even though he doesn’t read or write. Darshan uses visual symbols to navigate his world.
“His story is one of balancing what he craves and needs with the limitations his disabilities put on him,” Claudia Shah said.
The AchieveKids community has helped make it possible.
AchieveKids is a nonprofit, special education program founded on the Peninsula in 1960 that serves students with severe developmental, emotional and behavioral challenges at campuses in East San Jose and Palo Alto.
The programs focus on individual and group education while helping students with academics and life skills like cooking and cleaning. When teachers talk about taking a field trip, they’re not planning a day at a science museum.
“Let’s learn how to take a bus, let’s learn how to go to a grocery store and how to act in the aisles,” said Karin Klarreich, the school’s director of development organization.
AchieveKids draws students from 30 area school districts from Gilroy to Santa Cruz to the East Bay. It gets most of its funding from school districts and doesn’t charge individual tuition. But administrators also must raise money to pay for many of the extra services, which is why they seek donations and government grants.
Their latest effort, to supply the playgrounds with Schwinn Meridian adult tricycles, would definitely boost their current stock of only three bikes.
The Adaptive P.E. program
is an important component for its 110 students. On a recent sunny day Darshan, known as “D” by teachers and staff, joined his peers on the playground.
School officials said many of the students struggle with motor skill challenges, making it difficult for them to play in conventional ways. Riding an adult tricycle has become an effective tool to help improve strength, balance and concentration.
School executive director Ryan Eisenberg said these physical skills promote learning that can help students “develop a sense of self and a sense of surrounding and how to navigate the community.”
Trikes have seen a rise in popularity among the aging, health-conscious baby boomer population. With a low center of gravity, the three-wheelers are difficult to tip over. It’s the perfect mode of exercise for Darshan, whose gravitational insecurity limits his ability to go downstairs or walk outside.
A fleet of trikes at AchieveKids also would allow Darshan to participate with others instead of playing alone.
“It gives them one other dimension to engage in a social and friendly activity,” said Darshan’s father, Hitesh Shah, a business development director for the financial service firm BDO.
“Hopefully, after doing it for a number of times — it could be six months or three years, whatever it takes — then it is something that can translate into a normal home environment as a fun activity.”
Eisenberg added the bikes could allow AchieveKids students to connect with “neurotypical play friends “because they will now have something they can ride in the community” together.
Not that Darshan always is willing. The lean teenager declined when a photographer gently prodded Darshan to show him his tricycle at home.
“No, I don’t want to,” he said while in his room with a video playing.
Claudia Shah told her son he’d get a soda if he’d just step outside and pedal the trike for a moment.
“Mom, go away. Out,” came the response.
“Please go out. Please go out now. Be gone. Be gone. All of you.”
Everyone convened in front of the house in East San Jose with the tricycle and another contraption called a “pumper jumper” on the sidewalk.
But the day’s star was holding out, so Dad took extraordinary measures.
Whatever Hitesh Shah said or offered worked. Darshan begrudgingly appeared to sample the vehicles.
Yet there was no hiding the look of elation as he whooshed along the sidewalk on the tricycle.
Satisfied with the performance, Darshan made a quick retreat to his room, where his iPod sat by the bed.
The boy had crossed a finish line but it remains a challenging road ahead for the family.
“When you have a special-needs child your longterm retirement goal is you cannot die,” Claudia Shah said. “Your kid is going to need you forever.”