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Living the Chai Life

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

Step One in Parenting: Take the Time to Care for You!

6 Ways To Take Care of Yourself When Parenting a Sick Child

Finding enjoyable outlets -- like Chai Lifeline's Family Camp Adventure-- is one way that parents can refresh their minds and bodies.

From the moment you wake up until the time you rest your head upon your pillow at night, your day is filled with the responsibilities of caring for your sick kid (or sick children!), and their brothers and sisters. Treatment, therapy, medical appointments, or school issues, not to mention the day to day necessities of taking care of a home and making a living. As you haul that last load of laundry up the stairs or fall into bed at night, you find yourself wondering, “When is it time for ME?”

That’s more than the question of the hour. For parents, and especially parents of children who have illnesses or special needs, taking time for oneself is critically important. And while it may seem to go against your nature, putting yourself first at times can be the best thing you can do for your child.

As a parent, you are your child’s role model.  You set the example for your children and you set the tone in the home.  If you are calm, if you are coping, you model that behavior for your family.

I’m not forgetting the Catch-22 of parenting a sick child. The more extensive the health and welfare needs of your children, the more time they will need. No matter what we do, there are only 24 hours in a day. So how can you carve some precious time for ourselves?

Be aware.

The first step is recognizing that you need a break. A recent kidshealth.org article pointed out that none of us are superhuman. While we may be able to leap tall buildings in a single bound, none of us can do that while simultaneously sitting at a child’s bedside, preparing meals, and schlepping to the doctor. No one can do it all. And even the most fuel-efficient cars need gas (or recharging!) sometimes.

Accept that accepting help is a sign of strength.

Very few of us like appearing of feeling weak. So remember: asking for help and accepting assistance is a sign of strength. Remember the “It takes a village to raise a child” line? It’s true. And the larger your village, the better off your family will be.

Find support.

Look around. Who can help and when can that those people take over for a bit? It might be a spouse, siblings, parents, friends, or community resources, but there is usually at least one person who can run errands, babysit, drive a sibling to dance lessons…do something. Yes, it means giving up some control. And let’s face it, not everyone will do it as well as you. But if it gives you some breathing room, your children will be able to manage one more pizza or pasta supper.

Find something to do that will quiet your mind and rejuvenate your spirit.

Go to the movies. Lock yourself in a room and read for 20 minutes. Take everyone’s advice and exercise. Try yoga, walking, or cycling. Go out with your spouse for a leisurely meal. Take a long bath. Everyone will offer you advice – and lots of clichés. The trick is to find what works for you. Taking time for yourself means disengaging from the constant pressure, and only you can find the solution that works.

Stay healthy.

This is a truism that is really true. Non-stop caregiving can wear you down emotionally and physically. So eat right, exercise (even if that means just taking a short walk after dinner), and try to get enough rest. Give up late night TV and turn off your computer in favor of sleeping.

Don’t try for perfection.

British pediatrician and psychoanalyst Donald Winnicott coined the phrase “the good enough mother” to describe the triumphs of ordinary parenting: giving children love, structure, encouragement, and confidence. Even if we could be perfect, it wouldn’t be an optimal way to parent. Our children need to see that we take care of ourselves or they risk confusing continual self-sacrifice with love for them and self-love.

 

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.

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.

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