SANDY — Madeleine Hales, a petite, 16-year-old girl with pale blue eyes, short blonde hair and glasses, is a member of the Alta High School mountain bike racing team. She competes for the junior varsity, finishes in the middle of the pack and aspires to be good enough to pedal for the varsity team next year as a senior.
Which isn’t particularly notable except for this: Before the race even begins, she faces a mountain of challenges the other riders don’t face. Madeleine has Turner syndrome and autism.
Her parents, avid mountain bikers, introduced her to the sport several years ago, thinking it would be a good family activity and improve her social life. It turned into something else last year when, in her first race, she placed second in the sophomore competition at Soldier Hollow. “I was thrilled and surprised,” says her mother, Heather. In the next race, Maddy finished seventh.
She finished farther back in the pack the rest of the season, largely because she was beset with extreme anxiety during her races, caused by the cheering and noise of onlookers. When it happens, she suffers what her parents call a “meltdown.” She cries and screams, although she continues to pedal, albeit at a slower pace.
“The noise gets to her,” says Heather. “And if she falls, she gets really mad at herself and has an autistic tantrum. It’s unfortunate because she has so much skill, talent and cardiovascular strength.”
“It (the noise) just keeps going on in my head,” says Maddy, placing her hands over her ears as if reliving it. “It gets tiring.”
That she is able to compete at any level against such competition is remarkable. Maddy was born with Turner syndrome, a rare disease affecting only girls (actually, she has the mosaic form of the syndrome, which means only some of the cells are affected). Among other things, it can affect fine and gross motor skills, vision, hearing and stunt growth and puberty. Many of the problems can be remedied with medicine. Maddy, who was 5.2 pounds at birth, took growth hormone for 18 months; she is 5-foot-4, four inches shorter than her younger sister, Morgan.
During Maddy’s preschool years, Heather began to notice other symptoms that seemed unrelated to Turner syndrome. Her third-grade teacher recommended that Maddy undergo a test for autism; the test revealed high-functioning autism.
She was placed in special-ed classes for the next three years, but in junior high she began taking some mainstream classes as well. At Alta, she has a special-ed class but also takes mainstream classes, with a designated “scribe” to take notes for her because her lack of coordination makes her handwriting illegible. She earns mostly A’s and B’s.
“She’s much more talkative than some autistic kids and, depending on the person, she is much more open to hugs,” says her father, Steve. “At other times she doesn’t want anyone talking to her or touching her. She wants to be by herself.”
When Maddy was 4 years old, Steve and Heather tried in vain to teach her to ride a bike. “It was a lot of work,” says Steve. “She just couldn’t balance.” They put training wheels on the bike and for the next two years left it at that. Meanwhile, she rode a razor scooter around the neighborhood, which forced her to balance for a few seconds each time she pushed off with her free foot.
“I guess that taught her balance,” says Steve, “because after that she was able to ride a bike.”
She began racing in kids’ mountain bike races, which are held on shorter, less-challenging courses than the adult races. Maddy also took dance classes, but couldn’t keep up with her peers. She tried figure skating for several years, but the competitions — which put her on the ice alone, with an audience of parents and judges — produced more anxiety. She quit, telling her parents, “I just want to do mountain biking.”
Mountain biking was the family sport. Both Steve and Heather had been racing for years, and when the family lived in Arizona, Steve had started a mountain biking club. When mountain biking became a high school club sport a few years ago, Steve became the head coach of the Alta team and Heather an assistant coach. The family builds family vacations around mountain biking. This year they went to Colorado for a week of high-country riding.
“I was just hoping we’d have a fun family activity, and I wanted Maddy to be able to use her body in a healthy way and encourage lifetime fitness,” says Heather.
Mountain biking presented new difficulties. Maddy struggled to learn how to use the gears in steep terrain and to master the technical skills needed to navigate the winding, roller-coaster-like trails. To make the transition from children’s races to adult, Steve and Heather took Maddy to the top of Corner Canyon — a long, steep mountain biking mecca in the southeast corner of Salt Lake Valley above Draper — and escorted her down Canyon Hollow Trail — the equivalent of teaching someone to swim by throwing her in the deep end.
“We made a lot of mistakes on that first attempt,” says Heather. “There were lots of turns, and she crashed pretty hard. She still has a scar on her hip from that. We feel bad about that.”
Since joining the Alta team as a freshman, Maddy has demonstrated a certain grit and competitiveness. “She wants to win and go really fast,” says Julia Graf, the Alta team captain. “If she wants something badly, she will put her mind to it and get it. This year she’ll be up there with the pack. I am (surprised) because I know she has disabilities. I’ve never met anyone with a disability like hers who does what she does.”
Her physical and emotional challenges present many obstacles. While she is still trying to master the use of gears, her impaired coordination makes even the simple act of shifting gears difficult. She also struggles to judge pacing — she tends to start the race too fast — to spread her energy judiciously over the entire race.
She faced another difficult challenge learning to ride in cleated shoes that bind her feet to the pedals like a skier to a ski; they require a certain twisting movement of the foot to release in the event of a fall. Maddy has had several hard falls because she couldn’t escape the pedals.
Then there is her anxiety. To address that issue, the Utah High School Cycling League — which oversees the sport — has decided to allow her to wear earphones during the race.
“It’s normally against the rules, but in her case we’re going to allow it,” says Lori Harward, the league’s executive director. “It will help her. Our kids know her; they totally understand and are super cool about it.”
Harward, whose daughter has Down syndrome, has emphasized inclusiveness in the fledging sport, which now boasts some 1,200 Utah riders, not counting 450 junior high kids. Their ranks include several riders with autism, ADHD or Down syndrome, many of whom have guides to escort them through the course. This season the league will debut its “Elevate” program, which provides races exclusively for those with disabilities, although Harward prefers to mainstream such riders whenever possible.
“We have several autistic kids, but Maddy’s probably the best, and she is the only girl,” says Harward.
Maddy has found something she is about passionate about — "I love it!" she says. The sport has also increased her social circle, at least at school. She no longer sits alone during school lunch — she is joined by her teammates. She possesses a sharp sense of humor and wit that enable her to exchange in playful banter with her teammates. She has even earned a nickname from the team — “Mad Maddy Madeliene.”
“We all love her,” says Graf. “She always can make us laugh and smile. She is hilarious!”
But the difference in Maddy's maturity and that of her peers means she has few friends and little social life away from school. While the other girls talk about boys and Taylor Swift, Maddy is obsessed with “My Little Pony” and cartoons. She stays close to home and her family.
Says Heather: “We hope Maddy will continue to ride her bike and race for the rest of her life like her dad and I do. It will bring her lifelong fitness and love of nature and bring her personal success and confidence.”
Deseret News columnist Doug Robinson is a part-time coach at Alta High School.
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