"I Won"

In a recent High School Cycling League race, Elijah struggled around a very technical course 5.5 miles long with 516 feet of elevation gain.  Of the 140 riders competing in his classification, Elijah completed his lap dead last, 25 minutes 22 seconds behind the next slowest rider, but the crowds cheered as loudly for him as the had for the one that was first.  After the race, Sally overheard a conversation between him and another rider.  The other rider said, “Elijah, how did you do in the race”.  Elijah replied, “I won”. 

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First Skinned Knee - A breakthrough

Exactly one year ago today was the first day of bike camp for Elijah.  Two days later he rode a 2 wheel bike for the first time in his life.  He has made cautious progress over the past year, but I often wondered what would happen when he got his first skinned knee.  That day is today.  His bike tire slid on the dirt and Elijah went down hard.  He picked up his bike and threw it and cursed nature, but was back on the bike again within a minute.  

 

Victor Frankl said, "What man actually needs is not a tensionless state but rather the striving and struggling for some goal worthy of him.  What he needs is not the discharge of tension at any cost, but the call of a potential meaning waiting to be fulfilled by him."

 

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Elijah's Time Trial for Corner Canyon Cycling Team

One year ago, Elijah couldn't even ride a bike.  Yesterday afternoon, was the time trial for the high school team.  We weren't sure if Elijah would even make it a hundred yards.  Elijah completed the trial in 17 minutes and 28 seconds.  He was amazing!

10 Year Anniversary - Jason McElwain, basketball player with autism has game of his life

Our son, Elijah, was diagnosed with autism just over 10 years ago. When I saw this video, I couldn't stop crying.  Jason is a great inspiration to all.  Those with special needs can do great things, but only if we give them the opportunity!


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Madeleine's Courage

 

Madeleine Hales is a competitive mountain biker for Alta High School and she has autism.  She is one of the great inspirations behind the first special needs bike camp in Utah.  She was a volunteer and spotted other riders at the camp.

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.

Email: drob@deseretnews.com

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These Special Ones Can Do Hard Things Too

A spontaneous standing ovation erupted from the crowd of thousands as Elijah’s name was called.  Elijah couldn’t contain his excitement, so he sprinted up the aisle to the stage.  His grin stretched into a huge smile as he was given a medal and awarded a state champion jersey.   Tears in the crowd flowed as they continued to applaud.  Elijah, a quiet autistic boy, high-fived every person along the aisle as he returned to his seat.  It all started the year before.  Elijah was a sophomore at Corner Canyon High School in Draper, Utah.  He and his special needs classmates spent much of their day isolated from the rest of the school.  We wanted Elijah to have more of a connection with the other students and so we arranged for Elijah to become the manager for the school mountain bike team.  At practices, he would check-in the riders and at bike races he would give them their race numbers.  We drove all over the state for the races; Elijah rang a cowbell as the riders passed by in a cloud of dust. 

 

Even though he wasn’t likely to give them a response, popular and friendly boys and girls on the team began to greet Elijah in the hallway.  At the end of the season, the Executive Director of the Utah High School Cycling League challenged us to have Elijah ride for the team the next year.  Despite her insistence, it didn’t seem like a possibility.  Elijah had tried and failed to ride a bike for years.

 

We found a national organization called iCanShine.org who claimed an 80% success rate in teaching those with special needs to learn to ride a 2-wheel bike.  Their solution was a 5-day bike camp with specialized equipment and trained staff.  The program was not offered in Utah, but after consideration we decided to make the commitment to Elijah and the community to bring them in.

 

Learning to ride a bike is a right of passage for most people.  We remember when and where we were.  It is a hard thing to do.  80% to 90% of those with special needs never learn to ride a bike.  For them, it is an even harder thing to do.  Our generation is prone to try and make the path easier for our children.  We fail to recognize the source of our own strength.  When we remove hard things from the lives of our children, we also remove opportunities for growth, strength, and character. 

As difficult as it is to allow hard things for our children, it is even harder to allow hard things for our special needs children.  They are already very familiar with failure, but when those with special needs discover they can accomplish hard things it can be transformative.  Once they know they can do one hard thing, they start thinking they can do other hard things as well.

 

In time, the special needs bike camp began and the captain of the Corner Canyon mountain bike team walked beside Elijah encouraging him with every pedal.  On the third day, when Elijah rode on two wheels for the first time, we fought back the tears.  We knew we would become emotional if Elijah learned to ride a bike, but we were surprised at how emotional we got when most of the other 39 participants rode for the first time.  One Mother wrote about her 21-year-old son, “When we returned from camp, I brought his 17 year old sister to the window and tears filled her eyes as Nate rode his bike up the driveway”. 

 

Learning to ride upright on a simple bike under controlled conditions with a spotter along side was still a far cry from riding a mountain bike outdoors.  We spent the entire summer day after day, first in the church parking lot and then in the school parking lot, and on to paved trails, hills, dirt trails, and so on.  Breaking, steering, coasting (still can’t do it, breaks and pedals at the same time), and changing gears was (is) a slow and painful process.  There were falls and frustration.  Sometimes his only motivation was the promise of a Mutant Turtle shaved ice when we were done.  Elijah spent hour after hour, day after day, working hard just to ride with a semblance of what came naturally for his 7-year-old brother, Noah, riding along side.

 

The mountain bike season began and at each race, a special course was laid out and the difficulty slightly increased.  Other special needs kids were recruited and rode as well.  The “Elevate” special needs race became a crowd favorite.  Riders, parents, coaches from every team gathered to cheer on Elijah and the others.

 

The final race of the year was the state championship in St. George.   The course was substantially more challenging; a half-mile of red rock, obstacles and ravines.  We arrived the day before and spent hours practicing the course.  If the difficult course was not enough, on the day of the race we discovered Elijah had lost his glasses.  We spent hours searching, but to no avail.  Elijah’s fears were at the breaking point. 

 

I have seen courage before, but on that day a scared, quiet autistic boy got on a bike he had only recently learned to ride, and traversed a red rock course in Southern Utah that he could not see.  It was courage redefined.

 

At the end-of-year banquet, Elijah turned his medal over and over in his hands as the standing ovation died down.  As tears clouded my eyes, I noticed a gleam in his.  I don’t know if he knew how hard his future would still be, but what he did know is that he could do hard things too.  

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