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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.

Does Your Child Qualify for SSI Benefits?

 

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.

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.

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

Do you qualify?

For your child to qualify for disability benefits, he or she will need to not only be disabled, but your family will need to meet income level thresholds. If your household income is too high, your child will be ineligible for SSI benefits.

The process of determining if your child meets the financial qualification for SSI is referred to by the SSA as “deeming.”  The SSA will consider some of your income and resources when determining if your child meets the financial requirements to receive SSDI benefits, but not everything. If you have other children or a spouse, your income threshold will be higher.

What are the medical requirements for SSDI for Children?

The SSA’s definition of “disability” for children states that children must have a mental or physical condition that seriously limits their activities, has lasted or will last for at least 12 months, or is expected to significantly shorten the child’s lifespan so that s/he will not survive past childhood.  In order to determine if the mental or physical condition meets the requirements of a disability, the SSA uses a list of impairments commonly referred to as the Blue Book.

The “Blue Book” lists the medical criteria for evaluating a mental or physical impairment to determine if the severity is a disability for the child.  In addition to the Blue Book, the SSA maintains a Compassionate Allowance list with conditions that are considered so severe they almost always meet the medical requirements for a disability. Compassionate Allowances are also approved much quicker than typical applications, so your child could receive benefits much faster.

Evidence used to prove that your child meets the criteria in the Blue Book includes medical reports, medical tests, information from the child’s school, reports by caregivers or social workers, consultative examinations ordered by the SSA, and information provided by parents or other sources about the child’s daily activities, symptoms, and functional limitations.

 Examples of life-threatening childhood illnesses in the SSA’s Blue Book.

Many of the illnesses contained in the Blue Book can be considered life threatening.  Each condition has specific criteria that must be met in order to consider the condition a disability.

Childhood cancers: Cancer is addressed in Sections 113.00 (solid tumors) and 107.00 (hematological disorders).

Heart transplants: If your child has a serious heart condition and requires a heart transplant, the SSA will consider your child medically disabled for at least 12 months following the procedure. After 12 months, the SSA will reevaluate your child to determine if he or she is still medically eligible for benefits.

Low birth weight: If your child is born prematurely, he or she could receive benefits. The SSA has a chart depicting how much your child must way at his or her time of birth to qualify.

Additional categories include musculoskeletal system disorders; special senses and speech; and disorders involving the respiratory, cardiovascular, digestive, genitourinary, dermatology, endocrine, neurological, and immune system disorders. Information about congenital disorders that affect multiple body systems and mental disorders are also available.

 How do I apply for SSI for my child?

The SSA’s website provides detailed steps for how to apply for SSI for your child.  You can complete the Child Disability Report online; however, to complete an SSI application for your child, you must schedule an appointment with your local SSA office by calling 1-800-772-1213.

 

Editor’s Note: Social Security Disability Help(DisabilityBenefitsCenter.org) is an advertising service paid for by the lawyers and advocates whose names are provided in response to user requests (the free disability evaluation tool on the site).

 

 

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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