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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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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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How Does Your Synagogue Welcome Your Child?

How Does Your Synagogue Welcome Your Child?

This is the time of year when Jews spend a lot of time in synagogues. And when parents are in shuls and temples, so are their children. Or are they?
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 Unfortunately, many houses of worship are less than welcoming to young members who require wheelchairs or other medical equipment. There’s the physical challenge of getting into the building or the sanctuary: small rooms, old buildings built before ramps were required, women’s sections in balconies that are inaccessible and/or a lack of elevators can make it impossible for any but the most able-bodied to enter. (Children aren’t the only people in wheelchairs. Elderly men and women who use walkers and wheelchairs can also be “locked out.”) In my synagogue, a young woman who is blind requires not only a chair to sit in, but a place for her Braille prayer books (which come in a set of 23 volumes for the High Holidays) and a lectern to place them. Not every synagogue has that amount of real estate to spare.
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 A recent blog post from the Ruderman Foundation noted that children who attend camps for the ill or disabled often return home to a world where they are once again on the sidelines. Those whose families attend services on Rosh Hashana, Yom Kippur and/or the festivals of Sukkos and Simchas Torah sometimes feel a keen disconnect between the inclusion of summer camp and the world of the synagogue, which ideally should offer a haven to all. The Ruderman Foundation has built partnerships and provided grants to organizations of all denominational and non-denominational stripes to foster the inclusion of ill and disabled children and adults. But changes, whether physical or attitudinal, can be slow.  

How was your child welcomed into synagogue this year? What were the positives? What could be improved? What would you advise your rabbi or board about making the synagogue an easier place for ill children and their families to navigate?

 P.S. Here’s something to start your synagogue board thinking: low cost ways to make synagogues more welcoming to the disabled.

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Starting the New Year Off Right

Starting the New Year Off Right

We at Chai Lifeline have discussed writing a blog for years. Why haven’t we? Well, there are several excuses, er…reasons. What will we bring to the blogosphere that hasn’t been written before? Who will write it? Who will read it?
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Welcome to our blog: Chai Lifeline's ideas on parenting, grandparenting, "sibling-ing" and living with serious pediatric illness.

Welcome to our blog: Chai Lifeline’s ideas on parenting, grandparenting, “sibling-ing” and living with serious pediatric illness.


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The truth is that we have much to say about living with pediatric illness. Since 1987, Chai Lifeline has helped tens of thousands of families navigate the waters of life-threatening illnesses like cancer and chronic illnesses that run the gamut from things you’ve heard of (like cerebral palsy) to genetic illnesses so rare only a few http://gradeessaywriter.co.uk/ children have them. As for the latter two questions, the answer is, “We’ll write it. We hope you read it.”
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Read it, comment, and enlighten us with your experiences and your knowledge.
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Just a few ground rules: We welcome discussion, but we do edit comments. They must be on-topic and respectful. Yes, you can disagree, but keep the language polite, please. Trolls will be thrown off the site.

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