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.
Too often, our default emotion when we hear about childhood illness is pity. It’s natural to feel awful when confronted with the reality of pediatric illness, but does it really reflect how children with illnesses see themselves?
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Two Questions To Ask Yourself About Summer Camp For Your Child
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While most parents of overnight campers are already thinking about trunks and sunscreen, there remains a group of moms and dads who are still on the fence about sleepaway camp. Many parents of children who are ill or disabled haven’t found the camp that meets their child’s needs.
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Rivkah Reichmann, the associate director of Camp Simcha Special, a camp for chronically ill and disabled children and teens in Glen Spey, NY, has counseled hundreds of parents since the camp was established in 2001. She asks parents two questions to help them decide on camping options.
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Can the child’s health and safety needs be met by the camp?
Clearly, this is the most important concern regardless of a child’s health status. Parents should ascertain that the camp’s facilities are appropriate. If the child needs a wheelchair or walker, there should be easy access to every building so that the child can participate in all aspects of camp life. As important, maintenance and cleanliness standards must be high. Parents should also check the medical program: is there staff who can deal with both day-to-day needs and emergencies? Does the camp have emergency procedures in place? What about medication? Injections? Does the camp feel confident that its medical staff can deal with your child’s health requirements? Do you?
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What about your child’s social and emotional needs?
Summer camp is about friends and fun, but it’s also about growth and self-enhancement. The best camp for your child is the one that will allow him or her to shine through friendships and new skills. When the choice is between a “normal” camp and one designed for children with special needs, parents should consider the child’s social life throughout the year. Children who have to work to keep up may do better in a camp where everyone is working at their pace.
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“Sometimes children with illnesses or disabilities are the only kids who are sick in school. They are labeled. They feel left out. They may have few friends. These children may do better in an environment of peers, where all the children are struggling with similar challenges,” said Mrs. Reichmann. “They learn to appreciate their own strengths and differences. They are no longer isolated. The ‘bump’ they get at camp may be enough to make a difference all year long.”
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!
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.