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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.

 

5 Steps to Take To Nudge Your Teen With Chronic Illness to Take Responsibility For Her Health

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 help your teen with chronic illness become independent and treatment-compliantwant 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.

It is also the time when many teenagers with chronic illness want to throw in the towel.  They are tired of being different, of missing opportunities to be with friends because of because of medications, appointments, treatments, or special needs, or of just not feeling well. They are tired of watching what they do or eat, of knowing one wrong move could make them sicker or land them in the hospital.

In short, just when you need them to understand the importance of complying with medical routines, they may be ready to check out.

As a parent, you know that giving up (either them or you) is not an option. So how do you get them to get with the program and take responsibility for their health?

Step 1: Meet them where they are.

We all know that teenagers tend to do what they want.  Nagging, or trying to convince them to do something they don’t want to do, rarely work.  Begin the discussion instead by asking about their long term goals and talking about the steps they’ll need to achieve them.

Step 2: Set realistic expectations.

Don’t expect huge changes overnight.  Set small goals for your teen to accomplish.  The smaller the goal, the more likely it will be achieved, the greater the accomplishment and the stronger the will to continue on the road.

Step 3: Support the move towards change.

Make sure that the environment supports the changes that they are trying to make.  For example, if your child is trying to stay on top of her medication schedule, suggest setting an alarm on her phone as a reminder or leave the bottle out on the breakfast table.  Whenever possible, make sure that whatever is needed for success is easily accessible.

Step 4: Look for outside supports.

Managing your teen’s chronic illness is a team effort.  Look to her health care providers for ideas on how to improve and motivate her.  Many teens find that connecting with peers in similar situations is helpful. Many illness-centered groups, for example StupidCancer.com, or sites dedicated to teenagers like teenshealth.org or Bandaids & Blackboards for Teens have online communities that teens can join.

Step 5: Keep the encouragement coming!

Don’t nag! It’s counterproductive; eventually your teen will tune you out. Use positive reinforcement. Let your teenager know that you can see the changes and how proud you are. That may be all the motivation she needs. Every small change is a step toward continued health, so let her know you’ve noticed!

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.

New Video Shows That There Are No Limits to What Sick Kids Can Do.

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?

Chai Lifeline’s newest video, “No Limits” reminds us that children with illnesses have the same dreams as everyone else — and the same courage and determination to make them come true. Watch below.

“No Limits”

 

 

 

 

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).

 

 

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.”

 

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.

7 Tips to Remember When Breaking Bad News to Children

7 Tips to Remember When Breaking Bad News to Children

 

There are a million reasons why we can’t shield our children from the reality of death. Nor should we.

 Our challenge is not to keep bad news at bay, but to help our children understand, accept and express themselves when it happens.
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Adults can help children synthesize news of death, tragedy, or trauma into their lives. 
Adults can help children synthesize news of death, tragedy, or trauma into their lives.

It will be the rare child who will pass into adulthood without being touched by the death of someone close. Events like this week’s massacre at a Har Nof, Israel, synagogue, splashed all over the media in gory detail, can also shock or trigger distress. Chai Lifeline’s crisis team offers parents a 7-point guide for adults who must help children process a personal or communal tragic event.

1. Get yourself under control. Showing emotion is appropriate. Allowing yourself to be overcome with grief when transmitting news is scary for children. They need to know that an adult will take care of them.

2. Talk about death in age appropriate, direct, factual terms. Speak in a gentle voice. Parents can hug their children, hold their hands, or place their arm around their shoulders.

3. Encourage children to give voice to their feelings. Emphasize that there are no right or wrong reactions. Validate their emotions. Chances are, whether the dominant feeling is sadness, anger, relief that someone is no longer in pain, or intense longing, others feel it as well.oakley gascan sunglasses

4. Focus children’s attention on activities that can provide solace. If they don’t want to speak, they may feel better by drawing, writing in a journal, playing, making music or engaging in art projects.

5. Let children know who they can turn to for support. Never leave a child feeling stranded.

6. Encourage children to engage in activities they find comforting and relaxing. Let them know that even the saddest people need to play, be with friends, and distract themselves or they will be overwhelmed by grief. At the same time, you need to allow children to be children. Don’t get upset when they act their age.

7. Understand that children process bad news differently at each stage of childhood.Cheap ray ban sunglasses

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!

When the September Dilemma Continues Into October

When the September Dilemma Continues Into October

For children who are ill, returning to school in September can be a mixture of relief and dread. Relief, because children thrive on the order, routines, and social life of school. Dread, because school can be an ambivalent experience for students who need some sort of accommodation in school. 
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While schools must meet the needs of ill and disabled students by law, administrators and teachers range from amazingly helpful to eye-poppingly intransigent when asked to deviate from their norm. Parents are often counseled to “wait and see,” but what can you do when September turns into October and your child hasn’t settled comfortably into school? 
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Thankfully, it doesn’t happen all the time. But it occurs often enough for us to have gleaned some advice from Chai Lifeline’s professionals and parents of children who are out of school for cancer treatments or who need extra assistance because of chronic illness or disabilities.  
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