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Living the Chai Life

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

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.

Your Child Beat Cancer (YAY!). 5 Things Your Pediatrician Should Know

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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 directorStop & Shop Family Pediatric Neuro-Oncology Outcomes Clinic, note five areas for pediatricians as survivors transition back to healthy pediatric care.
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The end of treatment calls for a celebration -- and a conference with your pediatrician.
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The end of treatment calls for a celebration — and a conference with your pediatrician.

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.

 
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Be a Kid Again Invites Adults to Experience Childhood Fun

What happens when you drag a bed around New York City and encourage people to jump on it?
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Filmmaker and Camp Simcha division head Meir Kalmanson knows. People feel likes again. Kalmanson and his crew invited people to jump on a bed to help them remember that sick children miss out on more than just being able to jump on beds. The video, released today, has already tallied thousands of views on YouTube, and Kalmanson (and Chai Lifeline) hope it will spread awareness of the organization worldwide.
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Watch the video here: Be a Kid Again
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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!

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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