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?
A new generation of girls fighting cancer marched over the Brooklyn Bridge in a celebration of life, joy, and hope.
Faye R. was in a constant state of exhaustion. There simply weren’t enough hours in the day to care for a child with a chronic illness. When her daughter Rachel was well enough to go to school, the after-school hours brought an endless round of physical, occupational, and speech therapy. Medications and special food requirements took hours to fulfill. Illness meant trips to the doctor or even hospitalization. Rachel’s three siblings needed attention and care, too.
“After a while, I didn’t even have words to describe it anymore,” she lamented. read full story
Eight months ago, Becky B. was diagnosed with Ewings Sarcoma, a rare cancer that attacks bone and surrounding tissue. Since then, the 13-year-old’s life has centered around hospitals and painful treatment. The one bright spot has been the support of Chai Lifeline, whose volunteers and professionals have “adopted” the family, filling their lives with light during a very dark period.
This summer, Becky is going to Camp Simcha, Chai Lifeline’s overnight camp adventure for children with cancer and other life-threatening or chronic illnesses and disabilities. She can’t wait, and neither can her family. read full story
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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How Does Your Synagogue Welcome Your Child?
This is the time of year when Jews spend a lot of time in synagogues. And when parents are in shuls and temples, so are their children. Or are they?
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Unfortunately, many houses of worship are less than welcoming to young members who require wheelchairs or other medical equipment. There’s the physical challenge of getting into the building or the sanctuary: small rooms, old buildings built before ramps were required, women’s sections in balconies that are inaccessible and/or a lack of elevators can make it impossible for any but the most able-bodied to enter. (Children aren’t the only people in wheelchairs. Elderly men and women who use walkers and wheelchairs can also be “locked out.”) In my synagogue, a young woman who is blind requires not only a chair to sit in, but a place for her Braille prayer books (which come in a set of 23 volumes for the High Holidays) and a lectern to place them. Not every synagogue has that amount of real estate to spare.
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A recent blog post from the Ruderman Foundation noted that children who attend camps for the ill or disabled often return home to a world where they are once again on the sidelines. Those whose families attend services on Rosh Hashana, Yom Kippur and/or the festivals of Sukkos and Simchas Torah sometimes feel a keen disconnect between the inclusion of summer camp and the world of the synagogue, which ideally should offer a haven to all. The Ruderman Foundation has built partnerships and provided grants to organizations of all denominational and non-denominational stripes to foster the inclusion of ill and disabled children and adults. But changes, whether physical or attitudinal, can be slow.
How was your child welcomed into synagogue this year? What were the positives? What could be improved? What would you advise your rabbi or board about making the synagogue an easier place for ill children and their families to navigate?
P.S. Here’s something to start your synagogue board thinking: low cost ways to make synagogues more welcoming to the disabled.
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.