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Taking the Kids: When someone in the family has special challenges

By Eileen Ogintz, Tribune Content Agency on

Just ask 15-year-old Kati Leasure, who suffers from a rare genetic disorder that has caused her progressive loss of muscle control, which makes it difficult for her to speak. She's also a cancer survivor. Here, Kati is surrounded by others who have their own challenges, as well as by professionals and volunteers who make it their mission to help her succeed.

"You never hear anyone say she can't do something," said Jennifer Leasure, Kati's mom and herself a volunteer here. It's a different world from the school district, she and her husband Wade said, where everything is a battle, which echoes what other parents told me.

"You feel so alone," said Julie Taulman, whose son Kyle, now 14, was paralyzed from cancer at age two.

But these families aren't alone. There are 49 million disabled Americans -- nearly half with severe disabilities. That includes more than six million kids and 19 million veterans, including growing numbers suffering from Post-traumatic Stress Disorder (PTSD).

These programs not only enable them to experience the outdoors together but to connect with other families facing similar challenges. Here no one gawks. "I really don't think I would have survived without adaptive sports," said Taulman, who was inspired to start Steamboat Adaptive Recreational Sports at Winter Park's sister resort in Colorado.

Kyle, for his part, was motivated by adaptive sports to push for inclusion in his school -- on the basketball team and in a musical production, his mom said.

It all started when Hal O'Leary, a Winter Park ski instructor, volunteered to teach skiing to 23 children with amputations who lived in Denver. Now there are all varieties of adaptive equipment and a corps of more than 1,200 volunteers -- like Bob Steketee, a retired middle-school teacher, and his two kids Nathan, 20 and Hannah 22, college students who volunteer their weekends all winter long.

 

They say they get as much out of the experience as those they are teaching on the mountain. "You very rarely see a negative attitude here," said Nathan, an engineering student. "And if they're smiling, I'm smiling."

Hannah added that you realize that people -- whatever their differences or challenges -- are more alike than different. "It's easy to see what people can't do," she said. "A lot of people don't take the time to see everyone's commonality."

Bob noted there was a lot more negativity when he was teaching middle school and he saw that his students would suffer from self-imposed disabilities by insisting they couldn't do something rather than trying.

"The biggest takeaway is that there is life after disability," Taulman said. "The only limits are what you put in front of yourself."

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(For more Taking the Kids, visit www.takingthekids.com and also follow "taking the kids" on www.twitter.com, where Eileen Ogintz welcomes your questions and comments.)


(c) 2016 DISTRIBUTED BY TRIBUNE MEDIA SERVICES, INC.

 

 

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