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Living the Chai Life

Strategies for Coping with the Social and Emotional Challenges of Pediatric Illness

5 Steps to Take To Nudge Your Teen With Chronic Illness to Take Responsibility For Her Health

5 Steps to Take To Nudge Your Teen With Chronic Illness to Take Responsibility For Her Health

Adolescence is a time when parents of teens with chronic illnesses or medical challenges may help your teen with chronic illness become independent and treatment-compliantwant to tear their hair out.

Adolescence is the period where teens need to psychologically move away from their parents and become more independent. Many times, teens will push limits to see how far they can go.

It is also the time when many teenagers with chronic illness want to throw in the towel.  They are tired of being different, of missing opportunities to be with friends because of because of medications, appointments, treatments, or special needs, or of just not feeling well. They are tired of watching what they do or eat, of knowing one wrong move could make them sicker or land them in the hospital.

In short, just when you need them to understand the importance of complying with medical routines, they may be ready to check out.

As a parent, you know that giving up (either them or you) is not an option. So how do you get them to get with the program and take responsibility for their health?

Step 1: Meet them where they are.

We all know that teenagers tend to do what they want.  Nagging, or trying to convince them to do something they don’t want to do, rarely work.  Begin the discussion instead by asking about their long term goals and talking about the steps they’ll need to achieve them.

Step 2: Set realistic expectations.

Don’t expect huge changes overnight.  Set small goals for your teen to accomplish.  The smaller the goal, the more likely it will be achieved, the greater the accomplishment and the stronger the will to continue on the road.

Step 3: Support the move towards change.

Make sure that the environment supports the changes that they are trying to make.  For example, if your child is trying to stay on top of her medication schedule, suggest setting an alarm on her phone as a reminder or leave the bottle out on the breakfast table.  Whenever possible, make sure that whatever is needed for success is easily accessible.

Step 4: Look for outside supports.

Managing your teen’s chronic illness is a team effort.  Look to her health care providers for ideas on how to improve and motivate her.  Many teens find that connecting with peers in similar situations is helpful. Many illness-centered groups, for example StupidCancer.com, or sites dedicated to teenagers like teenshealth.org or Bandaids & Blackboards for Teens have online communities that teens can join.

Step 5: Keep the encouragement coming!

Don’t nag! It’s counterproductive; eventually your teen will tune you out. Use positive reinforcement. Let your teenager know that you can see the changes and how proud you are. That may be all the motivation she needs. Every small change is a step toward continued health, so let her know you’ve noticed!

Fitting Everyone In: Raising Healthy Siblings When a Child is Ill

Fitting Everyone In:

Raising Healthy Siblings when a Child is Ill

When a child is born or diagnosed with a serious illness, brothers and sisters are bound to be impacted. Why do some exhibit signs of stress or depression while others seem to thrive?

Siblings living alongside a child with a chronic illness will experience a jumble of positive and negative reactions. They can feel love and a combination of resentment, embarrassment, guilt, sorrow or fear simultaneously. Without the skills to understand and cope, a child’s self-esteem can suffer. Anger and guilt can turn inward, leading to a sense of shame or worthlessness. Depression, anxiety or somatic symptoms can arise.

Research has shown that siblings who receive emotional support and assistance from parents and other caring adults can become stronger, more resilient, more compassionate and tolerant. Anecdotal evidence seems to support the notion that many brothers and sisters choose careers in the helping professions, including medicine, mental health, and social work, as a result of their experiences.

Parents can take concrete steps to help brothers and sisters thrive despite the illness of a sibling.

Strategies for helping children understand and grow despite adversity include

  •  Communicating. Let siblings know what is happening and underscore that another’s illness is not their fault. Let them know that their wellbeing matters, also. Talk to your children. Ask how they are doing. Validate the reality that they feel: it’s hard for them to be a brother or sister. Seeing a sibling in pain, feeling that they can’t have friends over because of another’s medical challenges, even feeling embarrassed or angry are all normal responses. The more you communicate your empathy and acceptance, the easier it will be for healthy siblings.
  • Empowering. If your healthy children express an interest in being involved with a child’s medical care, allow them to help. The assistance can be as simple, like helping a sibling down the stairs or reading to a brother or sister before bedtime, or as complex as the child’s age, maturity, and interests allow.
  • Spending time with the ill child’s siblings. Even parents who move into the hospital with sick children can spend a few minutes speaking on the phone or Skyping with children at home. Never let a day go by without all your children feeling like they had your complete attention even for a few minutes.
  • Talking to your children’s schools. When it comes to pediatric illness, many parents want to maintain as high a level of privacy as possible. However, siblings do better when teachers know that all is not okay at home. They can look for red flags that signal distress, and hopefully intervene before small issues become major challenges.
  • Understanding normal adolescent behavior. The teenage years are a time of individuation, and some rebellion is normal.  Be on the lookout for extremes of both positive and negative behaviors, disordered eating patterns, and even discarding being a teenager in favor of becoming an adult too soon. It’s normal for children in large families to pitch in and help. It’s not normal for them to disregard schoolwork or express that “I’m the mommy now” or “I’m the father.” Behavior that is too good may be a result of the child’s temperament or a sign that they are suffering.
  •  Giving your children options for sharing. They may not want to tell a parent everything, or you may not be physically available. But it’s important that every child and teen have someone, a relative, family friend or “Big Brother/Sister” with whom they can confide.

How do you help your children cope with the emotional, social, and medical challenges of being a brother or sister of a child who is ill? Share your strategies here.

New Video Shows That There Are No Limits to What Sick Kids Can Do.

New Video Shows That There Are No Limits To What Sick Kids Can Do.

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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?

Chai Lifeline’s newest video, “No Limits” reminds us that children with illnesses have the same dreams as everyone else — and the same courage and determination to make them come true. Watch below.

“No Limits”

 

 

 

 

Two Questions To Ask Yourself About Summer Camp For Your Child

Two Questions To Ask Yourself About Summer Camp For Your Child

The right camp experience is the one that offers children fun, friendship, and a chance to enhance their social and emotional toolbox.

The right camp experience is the one that offers children fun, friendship, and a chance to enhance their social and emotional toolbox.


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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.”

 

Tears of Joy As Adam Walks Over the Finish Line

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Surrounded by counselors and friends, Adam Wolf crosses the Miami Marathon finish line.

Surrounded by counselors and friends, Adam Wolf crosses the Miami Marathon finish line.


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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.

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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.

7 Tips to Remember When Breaking Bad News to Children

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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Adults can help children synthesize news of death, tragedy, or trauma into their lives. 
Adults can help children synthesize news of death, tragedy, or trauma into their lives.

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

Getting Your Kids Into the Game

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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Sports and group activities are an important outlet for all children, regardless of health or abilities.

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!

When the September Dilemma Continues Into October

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?

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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synagogue
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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

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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Welcome to our blog: Chai Lifeline's ideas on parenting, grandparenting, "sibling-ing" and living with serious pediatric illness.

Welcome to our blog: Chai Lifeline’s ideas on parenting, grandparenting, “sibling-ing” and living with serious pediatric illness.


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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.

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