In the spring of 2016, Eli was diagnosed with a serious chronic disorder. As the realities of his new life, one where he would be more restricted in his movement, sunk in, he became more withdrawn. Concerned, they confided their worries to their Chai Lifeline West Coast case manager. 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
Your Child Beat Cancer (YAY!). 5 Things Your Pediatrician Should Know
Physicians Lisa Diller, the chief medical officer of the Dana-Farber/Boston Children’s Cancer and Blood Disorders Center and Peter Manley, an oncologist and director, Stop & Shop Family Pediatric Neuro-Oncology Outcomes Clinic, note five areas for pediatricians as survivors transition back to healthy pediatric care.
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1. Physicians should receive a copy of the child’s treatment summary and care plan created by the oncologist.
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2. Remember that the end of treatment is also a time of anxiety and transition for children and parents.
3. Watch for signs of side effects from treatment. (The article notes resources for the physical effects of treatment, but pediatricians and parents should be on the lookout for emotional and social changes as well.)
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4. Know what services are available for survivors and their families.
5. Promote good health habits.
Read the entire article here.
Baltimore Raven’s Jacoby Jones Throws a Lifeline to Cancer Patient
Football became too dangerous for Coby when he was diagnosed with cancer. Rather than let his football dreams die when he was told that he would have to stop playing in the league he loved, volunteers from Chai Lifeline, the international charity dedicated to helping sick children and their families, fulfilled his greatest dreams: playing with Baltimore Raven’s wide receiver Jacoby Jones.
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Jacoby and Coby played a competitive game with some of Coby’s best friends and Chai Lifeline volunteers. Coby wore his JONES jersey, and Jacoby Jones wore his custom-made (JA)COBY jersey.
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There’s no question that Jacoby Jones is a hero on and off the football field. But there’s no word on who won the football skirmish, which was played at Carroll Indoor Sports Center in Westminster, MD.
7 Tips to Remember When Breaking Bad News to Children
There are a million reasons why we can’t shield our children from the reality of death. Nor should we.
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.
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.