Despite having lost both his legs to illness, Benji maintains there are no limits to what he will accomplish in life.
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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The right camp experience is the one that offers children fun, friendship, and a chance to enhance their social and emotional toolbox.
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.”
Surrounded by counselors and friends, Adam Wolf crosses the Miami Marathon finish line.
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.
“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.
Our challenge is not to keep bad news at bay, but to help our children understand, accept and express themselves when it happens.
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It will be the rare child who will pass into adulthood without being touched by the death of someone close. Events like this week’s massacre at a Har Nof, Israel, synagogue, splashed all over the media in gory detail, can also shock or trigger distress. Chai Lifeline’s crisis team offers parents a 7-point guide for adults who must help children process a personal or communal tragic event.
1. Get yourself under control. Showing emotion is appropriate. Allowing yourself to be overcome with grief when transmitting news is scary for children. They need to know that an adult will take care of them.
2. Talk about death in age appropriate, direct, factual terms. Speak in a gentle voice. Parents can hug their children, hold their hands, or place their arm around their shoulders.
3. Encourage children to give voice to their feelings. Emphasize that there are no right or wrong reactions. Validate their emotions. Chances are, whether the dominant feeling is sadness, anger, relief that someone is no longer in pain, or intense longing, others feel it as well.oakley gascan sunglasses
4. Focus children’s attention on activities that can provide solace. If they don’t want to speak, they may feel better by drawing, writing in a journal, playing, making music or engaging in art projects.
5. Let children know who they can turn to for support. Never leave a child feeling stranded.
6. Encourage children to engage in activities they find comforting and relaxing. Let them know that even the saddest people need to play, be with friends, and distract themselves or they will be overwhelmed by grief. At the same time, you need to allow children to be children. Don’t get upset when they act their age.
7. Understand that children process bad news differently at each stage of childhood.Cheap ray ban sunglasses
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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Sports and group activities are an important outlet for all children, regardless of health or abilities.
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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!
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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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.
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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Welcome to our blog: Chai Lifeline’s ideas on parenting, grandparenting, “sibling-ing” and living with serious pediatric illness.
