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Mothers’ Programs Offer Needed Respite, Care, Friendship

Dedicated retreats and events help mothers weather the non-stop stress of parenting an ill child.

Dedicated retreats and events help mothers weather the non-stop stress of parenting an ill child.*
*Photo for illustrative purposes only.

Faye R. was in a constant state of exhaustion. There simply weren’t enough hours in the day to care for a child with a chronic illness. When her daughter Rachel was well enough to go to school, the after-school hours brought an endless round of physical, occupational, and speech therapy. Medications and special food requirements took hours to fulfill. Illness meant trips to the doctor or even hospitalization. Rachel’s three siblings needed attention and care, too.

“After a while, I didn’t even have words to describe it anymore,” she lamented. read full story

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Paws of Love Helps Children Emerge From Their Shells

Interacting with pets has physical and emotional benefits for children with illnesses.

Interacting with pets has physical and emotional benefits for children with illnesses.*
*Photo used for illustrative purposes only.

In the spring of 2016, Eli was diagnosed with a serious chronic disorder. As the realities of his new life, one where he would be more restricted in his movement, sunk in, he became more withdrawn. Concerned, they confided their worries to their Chai Lifeline West Coast case manager. read full story

Becky is looking forward to her first summer at Camp Simcha.

For Becky and Family, Camp Simcha Awaits

Becky is looking forward to her first summer at Camp Simcha.

Becky is looking forward to her first summer at Camp Simcha.*
*Photo for illustrative purposes only.

Eight months ago, Becky B. was diagnosed with Ewings Sarcoma, a rare cancer that attacks bone and surrounding tissue. Since then, the 13-year-old’s life has centered around hospitals and painful treatment. The one bright spot has been the support of Chai Lifeline, whose volunteers and professionals have “adopted” the family, filling their lives with light during a very dark period.

This summer, Becky is going to Camp Simcha, Chai Lifeline’s overnight camp adventure for children with cancer and other life-threatening or chronic illnesses and disabilities. She can’t wait, and neither can her family. read full story

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

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

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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?”
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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.”

 

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