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help your teen with chronic illness become independent and treatment-compliant

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

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.
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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?
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Does Your Child Qualify for SSI Benefits?

We welcome this contribution from Deanna Power of Social Security Disability Help. Please note that we cannot answer any questions about specific situations. Please address all questions about eligibility or how to apply to help@disability-benefits-help.org.

SSI offers financial relief to families living with serious pediatric illness.

SSI offers financial relief to families living with serious pediatric illness.

It is almost a law of nature that a child’s illness impacts a family’s income. Medical bills, time off from work, extra housekeeping or childcare needs add up quickly. SSI (Supplemental Security Income), a program administered by the Social Security Administration (SSA) provides some relief for families through monthly financial assistance to parents of children with life-threatening or severe chronic illnesses.
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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.”

 

Speaking To Your Children About the Midwood Fire

7 Ways to Help Children Traumatized by the Midwood Fire

Note: The professionals at Project CHAI, Chai Lifeline’s crisis intervention and bereavement division are available to answer questions and provide personalized assistance to parents, educators, and community leaders following this weekend’s tragic fire in Midwood, Brooklyn. Please call 855-3-CRISIS or email CRISIS@CHAILIFELINE.ORG. Rabbi Sruli Fried, MSW, has prepared this video presentation: Speaking To Your Children About the Midwood Fire

The Jewish community of Midwood, Brooklyn, one of New York’s five boroughs and home to one of the largest Jewish communities outside Israel, was rocked by the devastating fire that killed seven siblings, ages 5 to 16, and left a mother and surviving daughter in critical condition.

Within minutes after the Sabbath ended, Chai Lifeline’s  crisis hotline lit up with phone calls from concerned parents who needed assistance talking to their children about the tragedy. Project CHAI’S professionals, all therapists with training and experience in responding to traumatic situations, offer the following suggestions for parents, educators, and community leaders:
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  • Be attentive to your child’s behaviors that may signal distress. An event like the recent fire can trigger reactions in the immediate aftermath and for the next several weeks.  These behaviors are normal after a traumatic event, and are the child’s way of coping with the trauma. Some children will be able to verbalize their fears right away. Others may experience nightmares, difficulty falling asleep, a reluctance to separate from parents, or a terror of ordinary fire, among other responses.

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  • Be aware of your own reactions to the event. Children work out how to react to a situation by watching the significant adults around them, particularly parents and teachers. Try, if at all possible, to behave in a calm and controlled manner.

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  • Be prepared to speak about the event with your child. Your child may want to speak about the event at great length, or may prefer not to talk about it at all.  Feel free to ask questions, but do not force your child to speak if he or she does not want to. If the child wants to talk about feelings, be supportive and encouraging. Show your understanding and acceptance of these feelings by explaining that feelings such as fear, anger and guilt are all normal reactions to such an “abnormal” event.

 

  •  Encourage alternatives to talkingDrawing, writing, drama and music are all wonderful creative outlets that can be introduced to help children share their experiences.

 

  • Try to maintain a normal routine, and provide children with reassuring and realistic messages about their safety. Talk about what steps you have implemented in the home to ensure safety, and to prevent fires in the future. This will strengthen the children’s sense of safety and control.

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  • The single most important resource for children after exposure is the network of adults in their lives. Most children will recover from exposure to trauma with the aid of those close to them, including parents and teachers.

 

  • Don’t hesitate to call a professional if your child’s behavior or feelings seem extreme or if they persist after a month. The Project CHAI hotline, 855-3-CRISIS, is staffed by therapists who are trained in helping families cope with the aftermath of traumatic events. Emails to CRISIS@CHAILIFELINE.ORG receive immediate responses.

 

 

 

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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Baltimore Raven’s Jacoby Jones Throws a Lifeline to Cancer Patient

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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Baltimore Ravens wide receiver Jacoby Jones and cancer patient Coby get ready to toss the football at a game organized by volunteers for Chai Lifeline.

Baltimore Ravens wide receiver Jacoby Jones and cancer patient Coby get ready to toss the football at a game organized by volunteers for Chai Lifeline.


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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.

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.

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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