A unique collaboration between Chai Lifeline Mid-Atlantic and Johns Hopkins Medical Center is integrating young volunteers into Chai Lifeline while creating exciting programs for children battling a number of medical conditions.
Does Chai Lifeline bring out the natural empathy in people, or are people who are touched by the organization more likely to nurture their empathetic abilities when choosing careers?
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Adam Wolf was born prematurely. At birth he suffered a brain hemorrhage. His parents were told he would never hold his head up, talk, or walk.
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That was 16 years ago.
In January, as a member of Team Lifeline, Adam crossed the finish line of the Miami Half Marathon on his own two feet. Surrounded by counselors from Camp Simcha & Camp Simcha Special, his mother, Ali, and lots of well-wishers, Adam traded his wheelchair for a walker and walked the last 1.1 miles unaided.
Team Lifeline is one of Chai Lifeline’s endurance-training programs. Runners, walkers, and cyclists raise money for the organization while training for a marathon, half-marathon or to cycle in America’s Most Beautiful Bike Ride. The Team Lifeline presence at this year’s Miami Marathon and Half-Marathon was over 450 strong.
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The program attracts dozens of parents whose children have been helped by the organization. It is a way that they can say “Thank you” for the strength, confidence, and self-esteem that Chai Lifeline gives to kids who are isolated by illness. “Kids in wheelchairs don’t have a lot of play dates,” Ms. Wolf said. Camp Simcha Special gives the teen summers filled with friendship and experiences and a growing group of friends with whom he’s in contact all year long.
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The crowd roared as Adam neared the finish line. Other runners slowed their gait, sacrificing their own times, to join the growing crowd singing and chanting “Adam! Adam!” His mother’s eyes filled with tears as she realized that her son, the boy who wasn’t supposed to walk, was about to go through the finish gate.
“What Team Lifeline and Chai Lifeline have given us is beyond words. For Adam to have accomplished such a huge goal is more significant than the medal he received. He now knows he can set high goals and achieve the impossible. All he needed is a little inspiration,” Ali concluded.
Getting Your Kids Into the Game
Most of us recognize Title IX as the shorthand for Federal regulations requiring schools to provide equal access to sports to women. But do you know that similar regulations mandate that children in schools that receive federal funding have equal opportunities to participate in all activities, including sports and extracurricular programs?
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In theory, this means that schoolchildren can’t be left out because of physical or cognitive disabilities. In reality, inclusion takes understanding and work on the parts of families, schools, community sports leagues and sports facilities.
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Many times, children who are ill or who have disabilities end up on the sidelines simply because no one knows how to include them or because they fear that inclusion will be expensive, intrusive, or uncomfortable for healthy children. Sometimes, talking to coaches, teachers, and other parents can help ease the way for a disabled athlete. Be prepared to stand your ground, though. PGA pro Casey Martin, who suffers from a degenerative nerve disease, went all the way to the Supreme Court to assert his right to use a golf cart in tournaments.
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Remember that some sports activities are easier to integrate. Disabled athletes can use prosthetics during swim meets or hand cycles during bicycling events without impacting other children. Team sports require more cooperation, but isn’t what we’re trying to teach children when they play together? If you encounter resistance (and even Casey Martin’s pro-colleagues groused when he needed a golf cart), ask dissenters to remember that sports are supposed to be fun for children. It isn’t – and shouldn’t be – all about winning. Offer to speak to classes and teams about inclusion. Many times, the kids get it before their parents. They feel good about helping someone else feel like part of the group.
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If your child needs more assistance than your school or town can give, there are organizations that specialize in everything from adaptive skiing to therapeutic riding to running marathons. Disabled Sports USA is a good place to start. The New York City Sports Commission lists NY State resources, including adaptive playgrounds; other states may have similar guides.
Physical activity promotes cardiovascular and physical strength and increases range of motion and physical activities. These are as important for sick children as healthy ones. Most important, mastery of a sport or activity (at any level) helps children feel good about themselves. The self-confidence and esteem will transfer to other areas of their lives. So encourage all children — healthy, ill, or disabled — to have fun!
When the September Dilemma Continues Into October
For children who are ill, returning to school in September can be a mixture of relief and dread. Relief, because children thrive on the order, routines, and social life of school. Dread, because school can be an ambivalent experience for students who need some sort of accommodation in school.
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While schools must meet the needs of ill and disabled students by law, administrators and teachers range from amazingly helpful to eye-poppingly intransigent when asked to deviate from their norm. Parents are often counseled to “wait and see,” but what can you do when September turns into October and your child hasn’t settled comfortably into school?
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Thankfully, it doesn’t happen all the time. But it occurs often enough for us to have gleaned some advice from Chai Lifeline’s professionals and parents of children who are out of school for cancer treatments or who need extra assistance because of chronic illness or disabilities.
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Starting the New Year Off Right
We at Chai Lifeline have discussed writing a blog for years. Why haven’t we? Well, there are several excuses, er…reasons. What will we bring to the blogosphere that hasn’t been written before? Who will write it? Who will read it?
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The truth is that we have much to say about living with pediatric illness. Since 1987, Chai Lifeline has helped tens of thousands of families navigate the waters of life-threatening illnesses like cancer and chronic illnesses that run the gamut from things you’ve heard of (like cerebral palsy) to genetic illnesses so rare only a few http://gradeessaywriter.co.uk/ children have them. As for the latter two questions, the answer is, “We’ll write it. We hope you read it.”
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Read it, comment, and enlighten us with your experiences and your knowledge.
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Just a few ground rules: We welcome discussion, but we do edit comments. They must be on-topic and respectful. Yes, you can disagree, but keep the language polite, please. Trolls will be thrown off the site.