Introduction

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When confronting your child’s illness, it can be a harrowing, exhausting and isolating time.  You want to be strong for your child. You might be anxious and stressed, having only a limited amount of time, if any, for yourself. “Normal” life is turned upside down. As a result, people frequently lose touch with their inner core, the strong foundation that is their essence.

We’ve searched worldwide to find and learn from leaders in four important disciplines: Mind, Body and Wellness; Counseling; Education and Motivational Coaching. The teachings of these experts will give you the strength and support you need during challenging and difficult times. Soaringwords’ articles and exercises will take only minutes and yet will transform your mindset and increase your overall health. Another benefit of  these resources is the positive impact they can have on your entire family circle.  These articles can help you identify and express what is important to you, your children and your loved ones and to let go of the things that drain you physically and emotionally.

Please visit us often to read new postings  and to watch videos from experts  who can provide much needed wisdom and support to help you choose the most positive path.

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Parents Nurturing Themselves

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taffel Dr. Ron Taffel is known as one of the most captivating and practical child-rearing experts in the country.   He is the author of two best-selling books, Parenting by Heart: How to be in Charge, Stay Connected and Instill Your Values- When it Feels Like You’ve Got 15 Minutes a Day (Addison Wesley) and Why Parents Disagree: How Women and Men Parent Differently and How We Can Work Together (Morrow).  He was a frequent contributor to The Confident Parent, a monthly column that ran in McCalls Magazine from 1991 to 1996. He has also been featured on 20/20, The Today Show, CNN, and hundreds of radio shows.  Ron has a private practice in New York City and is the Founder of The Family Therapy Division at The Institute for Contemporary Psychotherapy.  He is married and has two children. In order to care for our children, we have to take time to nurture and protect ourselves.  In this article,  Dr. Ron Taffel offers success strategies that are easy to implement and are not time consuming. They work immediately and you’ll feel their positive impact.

 

Pay attention to what you are feeling when with others. Some people make you feel better, others don’t.  It is essential to stay around people who have positive attitudes. The reactions you sometimes ignore are actually your best guide.  Honor them.

Be direct and tell people what helps and what doesn’t. A crisis is no time to protect others’ feelings.  You need protection, not just your children.

Always leave more time to do the business of mourning, healing and dealing than you first think you’ll need.  Hard-pressed parents invariably say they underestimated how much time they needed to get through trying life experiences.

Seek out people from the past who were able to take care of you when you were younger.  Those who once had the ability to nurture may still be able to make you feel well cared for again.  It is very helpful for parents who must take themselves and kids through tough times to occasionally be cared for as if they were young again.

Stick to as many rituals as you possibly can during your everyday life – whether they last for a minute or a few moments. Rituals serve as anchors during chaotic times; they are an expression of faith despite the fact that everything in your family feels totally out of control. You can maintain some semblance of order in your life with rituals.

Allow time to talk to those who are most important to you. Nurture yourself with positive meditations in particular at  moments which you are most vulnerable – bedtime, waking up, just before and after eating, sitting alone in waiting rooms, on a crowded highway. These are times when simple meditations and mantras soothe.

Find an “after hours” talking buddy.  This is very helpful during the depths of a crisis.  The middle of the night, especially towards the morning (the “hour of the wolf” as the time from 3:00 am- 5:00 am has been called)  is terribly painful for just about everyone going through a difficult time.  Whenever it’s possible, ask for after-hours companionship from the people who love you.  Nurturance during this time will help you deal with your kids more effectively the next day.

Try not to take moments of connection for granted with your significant other or your children. Those potential moments of connection are often the ones that get ignored. And then, very quickly, one can feel deprived and alone.  Because there’s so much to take care of,  it’s easy to pass up possibilities to connect with those who are actually the most available.

Create new ritualsa month, a half-year, or a year after the crisis has happened. These are natural times to nurture yourself by remembering with others who know what you went through.

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How Does Helping Another Child Make An Ill Child Feel Better?

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PHOTO: ALCIR N. DA SILVADr. Ron Taffel is one of the most eclectic and practical child-rearing experts in the country and the author of two best-selling books, Parenting by Heart: How to be in Charge, Stay Connected and Instill Your Values- When it Feels Like You’ve Got 15 Minutes a Day (Addison Wesley) and Why Parents Disagree: How Women and Men Parent Differently and How We Can Work Together (Morrow).   He has also been featured on 20/20, The Today Show, CNN, and hundreds of radio shows.

 

 

 

Solid historical evidence shows that children’s sense of self-esteem, self-worth, mood, and anxiety lifts when given the opportunity to help others.  In fact, Freud instructed parents of an anxious and ill child to purchase a dog for the girl.  The child moved beyond her fears by focusing on caring for her pet.  Since this time, parents and professionals have found, over and over again, that vulnerable or stressed children (and adults) are relieved of burdens when offered the opportunity to care for others.  Unfortunately, today’s pop culture promotes the notion that kids just want to consume things.  This focus on “stuff” and material acquisition makes us forget that children’s powerful and inate desire to help others is still intact.  It is compelling to remember that even children who are clearly suffering will be relieved of their burdens when they can do something to help someone else.

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Acts of kindness give children a sense of power at a point when they are feeling the worst sense of powerlessness.  The hospital environment isolates children — machines beeping at all hours of the day and night, tubes, procedures, and too much time away from friends.  They feel so many negative things inside because “nothing seems to be working right” in their body and they have no control.  Doing an act of kindness helps children feel empowered.  This feeling is contagious.  It makes them feel more in control and more powerful at a difficult time.

Children identify with each other.  Doing something positive for another ill child reduces feelings of isolation and despair.  From nursery school through college, children are surrounded by their peers.  Their self-identity is wrapped up in beliefs, language, trends and behaviors that are shaped and shared in groups.  That’s why it is not surprising that the isolation of illness is one of the biggest hardships for hospitalized and chronically ill children.  When ill and challenged children reach out and take actions to help others, it gives them an experience that is incalculably positive because it instills a sense of hope.  They can immediately see or imagine how this kindness transforms an ill child.  Then they feel a sense of possibility and hope, leaving their sadness and isolation behind.  The child learns and borrows from this experience allowing them to feel more hopeful and positive in the face of the most difficult circumstances.

When children are ill, adults tend to focus primarily on the treatment of the child’s illness.  It is natural that when a child is ill, his or her parents will organize around attending to the child’s needs, treatments, and the alleviation of symptoms and discomfort.  Normal routines (enjoying fun activities together, doing homework, eating dinner together, watching TV and relaxing) go by the wayside and the child’s identity can be subsumed by the illness.  Another positive consequence when an ill child does kind acts for other ill children is that it gives parents, doctors, nurses and other caregivers the opportunity to acknowledge the child’s true personality as evidenced through creativity, kindness, and compassion.  This in turn makes the child feel more positively about themselves and their actions.

Parent’s Guide to Helping Children Cope With Their Surgical Experience

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Special thanks to our Expert:

Michelle Brauntuch, M.S., CCLS.  
Certified Child Life Specialist
Englewood Hospital and Medical Center, Englewood, N.J.

How to Reduce Anxiety

Everyone, even adults, experiences anxiety prior to surgery.  For children especially, what they imagine is often more frightening than reality.  You can, however, reduce your child’s fears and minimize your own anxiety by preparing your child for what will actually happen during the hospital experience.

You may want to call the Child Life Department or your doctor to see if it is possible to tour the Medical Center before surgery. Visiting a Medical Center for a tour and reading books about going to the hospital give you and your child a way to talk about some of the feelings you both have about the hospital and surgery.  Talking together, playing “doctor” or “hospital,” drawing and writing about the upcoming hospital experience are all important ways to help make feelings more manageable. This preparation will help to increase your child’s confidence and ability to cope, as well as reduce any fears.

After the tour, you and your child can plan and rehearse effective coping strategies at home to use on the day of surgery.  For example, you can plan to tell your child to hold a Teddy bear or other special toy until you can enter the recovery room.

How to Explain Surgery to a Child

It is important to be as honest as you can with your child about the upcoming surgery.  Simple, accurate explanations in developmentally appropriate words are best.  To communicate what an operation is, you should tell your child that it is a way for a doctor to fix something inside your body or to take something out of your body that is giving you trouble.  For example, you might say: “The doctor is going to help you and take your adenoids out of your body so you don’t keep getting all those ear infections.” If the surgery is to remove something, it is important to tell your child that we are all born with parts of our body that we don’t need, so its okay for the doctor to take it out.  Emphasize that life will be fine without it.

Children under age five need to know that they did not do anything wrong.  The operation is not a punishment of any kind.  Younger children have “magical thinking” and are developmentally egocentric. They think that they are the cause of everything that happens.  It is, therefore, important for a child not to feel at fault for needing this operation.  It’s just that a part of the body needs help –  like people who wear glasses need help for their eyes to see clearly.

When to Tell a Child About the Surgery

When approaching young children from two to six years of age, it is a good idea to tell them about the surgery only a few days prior to the actual date.  The younger the child, the less preparation time is needed because a sense of time is not as developed.  However, time is needed to play or “act out” the upcoming experience, so a child should be given at least two days notice.  Children seven years of age and older need time to think about questions they may have and to work through their feelings.  They should be told at least a week before surgery. Always tell your child the truth about what will happen.  Listen to your child’s questions and discuss any concerns.

What to Bring to the Hospital

Allow your child to pack special things to take to the hospital, such as favorite toys, books or videos that are familiar and can give comfort.  Pack slippers for walking to and from the playroom on the Pediatric Unit. Another important thing to explain to your child is that everyone at the hospital wears special clothes.  There are hospital clothes in all different sizes for children and special green clothes called “scrubs” that people who work in the  hospital or operating room wear.  All these clothes are cleaned a special way to make sure that there are no germs on them.

The Day of Surgery

Can Parents Stay With Their Child?

Parents are encouraged to participate in their child’s hospital experience.  You should ask your doctor who can go into the holding room and recovery room.  The recovery room is when a favorite stuffed toy or “security” item from home can be helpful for your child until you get there.

What to Say When Your Child Asks if the Operation Will Hurt

Explain to your child the special kind of “sleeping” they will be doing during the operation.  An anesthesiologist has the job of giving your child medicine that will help them sleep while their doctor performs the operation.  Anesthesia is either in an I.V. for older children or perhaps inhaled through a fruit-flavored mask for younger children.  Your child feels no pain during this special kind of sleep.

Explain that the doctor knows just how much medicine to give and when to stop giving it, so that your child will wake up when the operation is over.  Assure your child that this waking up will happen only after the operation is over and not before

Post-Surgery

The type of surgery your child is having will determine how much pain your child will experience after the operation.  Most surgery causes some pain or discomfort, but most post-operative pain can be prevented or at least reduced.  There are many medicines and methods which can be used to treat pain, but there are a few simple things to remember:

  • Children must know that their pain will be taken seriously and they need to tell a grown up what is bothering them and where it hurts.
  • Their parents, doctors and nurses will do their best to stop the pain.
  • The pain will be treated.
  • Medicine will be given to stop the pain quickly.
  • Having a parent or another loved one present may be the best psychological treatment for the pain. Parents know more about comforting their own children than anyone else.
  • Parents can help relax or distract their children.

After surgery, your child will be brought back to the room and monitored by a nurse.  When determined ready, a child will be given food or drink according to a diet ordered in advance by your physician.  Generally, children are encouraged to drink clear liquids (apple juice, ginger ale) and are offered jello or ices. Check to make sure that the staff at the hospital will ensure that all necessary arrangements are made for equipment and all prescriptions for medications and will be delivered to you with discharge instructions before you leave the hospital.

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What to Do Once at Home

Your child may seem to need you more than usual after getting home from the hospital.  Brothers and sisters may feel jealous of this extra care and attention, so it is helpful to talk about these feelings as a family.  Perhaps you can make arrangements to have siblings out of the house with friends and neighbors for a couple of hours when the patient returns home so they can settle restfully and you can give them your undivided attention.  Otherwise, maybe you can have a special treat such as a new video rental for them to watch to give you some room to focus on the patient’s re-entry to the home.

Let concerned friends and family help out with siblings in a routinized, non-emergency way.  This gives the siblings time to be the “center of the action” in normal play situations with friends and neighbors. Playing “operation” or “hospital” at home after surgery lets your child express important feelings and feel more in control.

Encourage your child to pretend giving you or a stuffed animal an operation, or suggest building a hospital out of blocks or drawing pictures and writing stories about the experience. Children can cope with the stresses of surgery and feel proud for having managed such a difficult experience.

Praise your child who will feel good about doing well on a difficult day.  This will help your child feel competent and successful and more likely to be able to incorporate this experience into a positive sense of self-esteem. Do not hesitate to call your physician if you have any questions or if your child’s condition changes in any way.

Helping Children Cope When a Sibling is Ill

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MichelleBrauntuchMichelle Brauntuch is M.S., CCLS.  Certified Child Life Specialist Englewood Hospital and Medical Center, Englewood, N.J. To children, the hospitalization of a brother or sister can be frightening.  The children in these families may experience turbulent feelings, may be separated from their parents for an unusual or uncommon length of time and the familiar routines of their daily lives may be disrupted.  Parents and other adults may act anxious or worried, and the children may hear words and phrases that sound very confusing or frightening. The needs of children whose sibling is hospitalized are too often forgotten in the midst of the tension and worry about the patient.  During this experience, these children often feel mixed emotions that can be misunderstood by the adults around them. This article was written to help the family members recognize and understand some of the reactions and concerns children may have when a sibling is hospitalized and to provide some suggestions on helping children understand and cope during this experience.

Several factors influence how a child will react to the hospitalization of a sibling :

  • the age and developmental level of the child
  • the seriousness of the illness of the sibling
  • the length of time the sibling has been ill and/or in the hospital
  • the amount to which the child’s daily routine is disrupted
  • the amount of time, if any, the child is separated from the parents/significant others with whom  he/she lives
  • the attention that is given to the child’s reactions and feelings
  • the quality of explanations and answers the child receives to the questions about the ill sibling

A variety of feelings about the hospitalization of a sibling may be experienced by children of all ages.  There also may be a variety of reasons why they experience these feelings.  Depending on the child’s developmental level and on their perception of the hospitalization, some feelings may be more prominent than others.  Their feelings may change from day to day or hour to hour. They may have any one or many of the following feelings. They may feel conflicted because they are having multiple feelings at the same time.

Confusion as to what is happening and why, particularly, if the hospitalization was very sudden or unexpected. Younger children may not even know what a hospital is – it needs to be described to them , for example, as “A place where doctors and nurses take care of people who are sick .  These sick people (adults and children) are called patients. These patients may need either surgery (also called an operation), which is when the doctor fixes something in their body that isn’t working well or he takes something out of their body that is giving them trouble, like tonsils, etc.  Patients also go to the hospital when they need to get medicine in a special way or they can’t take that medicine at home.”

Guilt about angry wishes or thoughts that they had toward the ill sibling.  Younger children, especially, may even have feelings that they are in some way responsible for the illness and its cause.  Young children are developmentally egocentric and view their actions as the cause of what happens in their world.  In addition, it is not uncommon for school-aged children to “wish” negative things about a sibling (ex: to wish for the moment that their sibling was “dead” or “sick”).  It is common for them to feel they somehow caused the hospitalization. In addition, they may also have feelings of guilt because they aren’t sick themselves.

Anger toward parents for not protecting the sick person from illness and also concern that the parents will not protect them from getting sick. Their trust in their parents may be shaken, and they may have feelings of insecurity.

Fear that they may become sick themselves or “catch it” and have to be hospitalized, especially if they are unsure of the reason for the hospitalization.

Abandonment and worry about not having their own needs and wants met.  They may wonder who will be taking care of them or making sure they are all right.

Rejection or being left out.  If the children are not kept involved or updated about the hospitalization, they may begin to feel like “outsiders” to the situation and not as important family members.  They may also be jealous of all the attention and concern the patient is given and be disappointed that they don’t seem to receive or deserve an equal amount.

Resentment because there are two sets of rules or standards: one for the hospitalized child and one for the other children.

Embarrassment because of the sibling’s condition.  The hospitalization may draw a great deal of attention to the children from friends, relatives, teachers peers and even hospital staff.  Children may not know how to interpret this. There are many ways in which children express their concerns and feelings.  Reactions depend on the individual child’s temperament as well as their age and developmental stage.  Children understand and cope with stressful situations in different ways. Some of the ways children may express their feelings include:

  • separation issues – clinging to parents or caregivers
  • eating disturbances – lack of eating or overeating
  • behavior changes – withdrawal, outbursts, misbehaving, “acting like the perfect child”
  • regression – returning to earlier self-soothing behaviors (thumb sucking, blankets), bedwetting, baby talk
  • displaying feelings of jealousy and competition, becoming argumentative, fighting with others
  • declining school performance
  • changing social patterns – decrease in interest or involvement with peers or withdrawing from family unit
  • becoming obsessed with the patient and the patient’s things
  • hypochondria – complaining of similar ailments to that of the patient

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Helping Children Cope There are many ways that you can help children cope with and understand the hospitalization of a sibling.  It is important to remember that incomplete information may create fantasies that are often worse than the real situation.  Allow and encourage children to ask questions and express feelings.  They may be hesitant to ask questions, especially if this is a very stressful time for the family.  Give honest and understandable answers to their questions.  Simple, direct answers are usually most helpful.  The following are other ways you can make the hospitalization of a sibling easier to understand for children.

  • Be honest before, during and after the hospitalization.  It is better to give correct information, rather than tell them something you will have to change later on or something that could cause incorrect fantasies.
  • Let the children know that it is okay to ask questions and talk about the hospitalization.  Reassure them that if you become upset or cry, that this is all right, too.  They may be afraid to ask questions because they may upset you.  Help them understand it is all right to have and to express their feelings and they can do so without losing control.  They will turn to you for examples of appropriate behavior.
  • Allow children to help in the preparation and planning of events.  This is as important to the healthy children to have some control over the situation as it is for the hospitalized child.  For example, letting them help with packing things for the hospital.  These are also excellent opportunities for talking and answering questions.
  • If the hospital provides a tour for patients before hospitalization, allow the siblings to also attend.  If an emergency hospitalization occurs, explain it as soon as possible.  Let them know how serious the illness or injury is and how soon they can see their sibling.
  • For younger children, you may act out the hospital experience with people, dolls or puppets.  Using puppets is a good way for younger children to share feelings they may be uncomfortable saying otherwise.
  • Read or color books with stories about hospitals or let the children make their own story-picture books on what it is like to have a sibling go to the hospital.  They could draw the pictures and you could write the story as they tell it to you.
  • If the children seem to be displaying a lot of anger or frustration, find an active or vigorous play outlet for them.  Through play, children work through their feelings.  It helps release their anxieties as well as burn off excess energy in a constructive manner.

Things You Can Do If you are staying at the hospital with the child that is ill and/or if the healthy sibling is staying somewhere other than at home, try to have contact with them daily.  Let them know where you are and what arrangements you have made for them and for yourself.  When you are with them, spend some special time alone with them if possible.  This may be a good opportunity for them to share some of their thoughts, feelings or fears with you. You can help them find ways to cope and understand when you are not with them.  Also try to provide maintain as much of the daily normal routine as possible. Try to continue the special activities of your child as much as possible, such as school or sport activities, birthday parties and holiday celebrations.  These are still an important aspect of their life. Activities that may help both the parent and the patients stay involved with the healthy sibling are:

  • Write, e-mail or tape record “letters” to each other.  Talk on the telephone as often as you can.  Even if they cry when hearing your voice, allow these feelings to be expressed.
  • Tape record bedtime stories or read to them over the phone
  • Send a new piece to a puzzle to them every day
  • Send safe, unused trinkets from the hospital to the healthy sibling, such as seasoning packets, plastic silverware straws, plastic syringes without needles and other safe, disposable hospital items.
  • Have both the patients and the sibling make greeting cards, pictures and picture books for each other.
  • If you cannot be with the siblings, ask them to keep a special item of yours for you until you can be with them.  It should be an item that they specifically associate with you, for example, your pillow from your bed or something from your pocketbook.  This helps them feel connected to you and reassures them that you will be coming back.
  • Have a photo exchange between the patient and the sibling.  Let the sibling select photos of themselves that they would like to send to the hospital for the patient.  Place these on the patient’s bed or in a place where they can be viewed easily by the patient.  If possible, take a picture of the patient actually in the hospital and send it to the sibling.  A digital camera is useful for doing this, and if you do not have one, check to see if the hospital has one available.  Pictures throughout a hospital stay can help keep the sibling updated on the patient’s progress as well as help prepare them for what to expect then they visit or when the patient comes home.

If possible, allow the sibling to visit the patient in the hospital.  This allows them to see firsthand where the patient is and helps clear any fantasies or misconceptions that may have occurred.  It offers an opportunity for questions to be asked.  It may also help reduce stress for the patient and reassure him/her that the rest of the family is all right and that things will be the same when they go home. Before the visitation, however , prepare the sibling for the experience. Give the children a simple explanation of the situation. You may say that his brother/sister is in the hospital so that the doctors and nurses can help him get better. If the patient can have visitors in the room, you may say you will see his room, where he eats and sleeps and where he plays. In order to prepare them for some of the medical equipment they will see, you must use developmentally appropriate language. You should say that they may  see some of the special things or medical equipment that help get the patient better.  Encourage them to ask questions about what they don’t understand but , especially for younger children, provide information in case they don’t feel comfortable or can’t formulate the questions to ask.  Depending on the age of the sibling, more or less information should be provided. Remember, there are Child Life Specialists or nurses available in most hospitals to provide any additional support or information that your children may need concerning the hospitalization.

Typical Questions From Siblings of Ill Children

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brauntuckMichelle Brauntuch is M.S., CCLS. Certified Child Life Specialist, Englewood Hospital and Medical Center, Englewood, N.J.   

The following are some questions that siblings may ask and some answers you may use as a guideline when talking to them about the hospitalization.  Again, remember to keep the children’s age and developmental level in mind when answering them. When questions are asked, you may first want to ask the child what they think the answers to their questions are (ex:  “Why do you think he’s in the hospital”, “How do you think he got sick”), clear up any misconceptions they have, as well as provide more information.  

 

1. Why does “Michael” have to be in the hospital? You can say: “Michael has to be in the hospital because he is sick. The hospital has special medicine and equipment, and there are things that the nurses and doctors can do to help him get better faster than we could at home.”  (Remind them that this is a different kind of “sick” that when they are sick.)  If there is surgery, you may say “Michael will have an operation to fix _________, that is giving him trouble.  An operation is when the doctor fixes something in your body that is giving you trouble or sometimes they take something out of your body that isn’t working well.  People are born with parts of their bodies that they don’t need, like your appendix, and doctors take them out when they give you trouble and you can live just fine without them.”

2. When is “Michael” coming home? You can say: “Michael will come home as soon as he is well enough.  The nurses and doctors will do every thing they possibly can to make him feel better and come home as soon as possible.”

3. Is “Michael” going to die? (The family may have had an experience where a relative or acquaintance went to the hospital and died, so they may associate hospitalization with death.) If the patient is terminally ill, you may want to prepare the children for this.  For example: “ The nurses and doctors will do everything they possibly can to help Michael feel better and come home.  We all hope he’ll be able to come home.”  It is important to be receptive to the children’s feelings at this time and encourage them to let you know what they are feeling and thinking both now and later on. There are many books available on explaining death and dying to children of all ages that you may find helpful. If the patient is not terminally ill, reassure the children that the hospital staff is helping the patient to feel better and then focus on what will happen when the patient comes home again.

4. Will I have to go to the hospital? If the children have no foreseeable problem, let them know that when they are “sick”, it is different than the patient’s illness, and that they don’t have to go to the hospital.  Tell them that if someday they have a problem that needs the special help from doctors and nurses or the special medicine or equipment, then they may go to the hospital, too.  Reinforce that it they need to go to the hospital, you will be there with them also.

5. Will I catch it? Explain that the illness is not contagious (as long as that is true).  Again, emphasize that this is a different kind of “sickness” than when they get sick (unless it is a hereditary illness).  Then let them know that you will be there for them if they ever have to be hospitalized.

6. What will they do to “Michael” in the hospital? You can say : “The doctors and nurses will do everything they possibly can to make Michael feel better and get well as fast as possible.  They may give him medicine, do a special test or take some special pictures to help them know what is going on inside his body and to help Michael get well the fastest”. Siblings may also be concerned with practical things like food, clothing, sleeping arrangements, friends, etc.  Let them know how these things are provided for both the patient and yourself  (ex: “Michael gets his meals on a tray in his room and Dad and I go to the cafeteria to eat”).

7. Why do you (the parent) have to go to the hospital? You can say: “There may be things that are very strange or may hurt or be scary for Michael, and I want to be there to help him feel more comfortable.  I would want to be there if this was happening to you, too.  The doctors and nurses aren’t trying to be mean to Michael.  There are just things that need to be done to help them understand what is going on in his body and to help him get better the fastest.  I will miss you when I’m not with you and I think you may be missing me and I wish I could be with you.  You may be feeling scared or sad or even mad now, and those feelings are okay.  I understand.  Let’s plan something special for us to do together when I get home and maybe we can talk more about these feelings and help you feel better.”

8. Do you love “Michael” more than me? You can say: “I love you both. Michael needs some special attention from me right now.  And when you need some special attention, I want to be able to be with you, too.  I know you may be having a lot of different feelings now.  What kinds of things might we do together to help you understand and feel better?”

9. Who will take care of me while you are gone? You can say: “I will make sure someone will always take care of you while I can’t be with you.”  Give specific examples such as “During the day you will be at school and your teacher will be there for you. Then you’ll be playing at your friend’s house and his mom will be there if you need anything.  I will be thinking of you and missing you when I can’t be there.” Be sure to let the children know if there are upcoming changes in routine.  You may even want to make up a special calendar or daily schedule showing the children where they will be on each day and at what time.  If possible, give the children a special list of telephone numbers, including emergency numbers, the number of the hospital room and/or where you can be reached, and numbers of friends and relatives they can call if they need help or are feeling lonely or upset. Friends and relatives may have misconceptions or fears about the hospitalization and may ask your children questions.  This may be upsetting to the children, especially when they don’t understand everything.  By discussing the hospitalization with your children, you help them with talking to others about it. After the patient comes home, continue to let the sibling participate in any home care that may be necessary.  Spend some special time alone with them even after you have returned home.

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Important Points to Remember:

  • Siblings need help to make sense of the changes which occur in their world when a family member is hospitalized.
  • Open communication provides an environment free enough for children to express concerns and questions.
  • “Protecting” a child from knowledge creates anxiety.  Children know about what is happening – they sense it.
  • Without correct information, children make up their own explanations for changing and frightening events.  The reality is never as frightening as the ideas children invent to explain things to themselves.
  • The unknown can be more traumatic to children than the truth.

Crisis Communication

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taffelDr. Ron Taffel is known as one of the most captivating and practical child-rearing experts in the country.   He is the author of two best-selling books, Parenting by Heart: How to be in Charge, Stay Connected and Instill Your Values- When it Feels Like You’ve Got 15 Minutes a Day (Addison Wesley) and Why Parents Disagree: How Women and Men Parent Differently and How We Can Work Together (Morrow).  He was a frequent contributor to The Confident Parent, a monthly column that ran in McCalls Magazine from 1991 to 1996. He has also been featured on 20/20, The Today Show, CNN, and hundreds of radio shows.  Ron has a private practice in New York City and is the Founder of The Family Therapy Division at The Institute for Contemporary Psychotherapy.  He is married and has two children.

Often when a child becomes suddenly ill, or when there is a significant trauma in his life, or his medical condition changes, parents put additional pressure on themselves to communicate perfectly.  The following is an article with success strategies to help you share important news with children.

Don’t feel pressured to communicate perfectly. With children there’s rarely one “make or break” conversation.  Understand that many mini-discussions will occur.  Any mistake you’ve made can be talked about again.  Even when it comes to highly upsetting events, there are almost always second chances to talk things over. As you approach your child with new distressing information, try to be direct and kind.  If there are two parents, rely on the parent who has the strength to take the lead in the conversation.  If you are a single parent, ask the doctor or child life professional to answer questions that you have prior to talking to your child.

Know and respect your child’s communication style. This includes the time of day he/she usually talks, whether a lot of questions help or hinder, and activities during which he/she opens up.

Kids talk in the middle of doing other activities. This fact of communication does not change, even during a crisis.  So remember, kids open up while in “parallel position” to parents.  Some examples are walking to school, bath time and bedtime.

Protect these moments. Create or stick to as many “talking rituals” as possible and your child will naturally open up even about difficult matters.

Don’t assume. During crises, adults can’t help but interpret what kids feel.  More often than not, our guesses don’t hit the mark, and kids can become more reluctant to talk.  So try to keep an open attitude. As part of not assuming, stick to the questions your child asks.  Try not to offer one fact more than a child brings up.  Remember, kids can feel easily overwhelmed and far more anxious by too much information.  Let your child lead.

Try not to pounce. During tough times parents want so badly to communicate that we tend to drop everything when a child seems ready to talk.  Unfortunately, most kids feel pressure when we’re over-eager and they end up clamming up.  Have faith in your child’s ability to gradually open up. In summary, if you:

  • Let your child lead
  • Are patient
  • Protect talking rituals
  • Respect your child’s communication style
  • Remember that mini-discussions have the power to heal
  • Understand that mistakes can almost always be mended

… then you will keep the lines of communications open, even during the most challenging times.

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Taylor

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When a child is ill, siblings, classmates and the entire community is affected. People want to do something positive to show love and support. Often people don’t know what to do or say to help, so they don’t do anything. In between Taylor’s chemotherapy treatments, her entire family — sisters Ryan and Cory and her parents — invited people to come together to do something kind for other hospitalized children. On a bright sunny morning, 200 friends, neighbors and classmates came together for a celebration at the local elementary school. Everyone decorated 200 quilts and pillows to donate to hospitalized children at the Morgan Stanley Children’s Hospital at Columbia Presbyterian Medical Center. Taylor and her family were grateful to deliver all of the quilts and pillows to patients in order to “pay it forward” and share the love. After Taylor’s second lung surgery she told her mom, “I feel lucky because if I hadn’t gotten sick I wouldn’t have spent so much time with my cousins, aunts, uncles, grandparents and friends. Mostly, I feel lucky because I probably never would have known how many people love me… and care.”

   73.Taylor Pillow Delivery   69.Taylor Party   70.Taylor NY Presbyterian

Soaring Stars®

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Nominate Soaring Stars! Sometimes the best way to feel great is to share hope or inspiration with other families who are going through a similar experience. We invite you to be a SoaringStar and email us your story which we will share on our website with hundreds of hospitalized children. Or maybe you know of someone else, a boy or a girl who has overcome an obstacle in their lives to inspire others to be strong.   By sharing these profiles of SoaringStars with millions of ill children, everyone will be inspired to see how “ordinary people are doing extraordinary things” to make our world a better place. To share your story please answer questions below and email them to heal@soaringwords.org. Also include a photo of yourself.

Wishing you strength and courage, Nominate a SoaringStar, Founder of Soaringwords

Inspiration for SoaringStars: Paul Steven Miller was my best friend from college and he became my chosen brother. The Torah says “words from the heart, enter the heart.” Everyone who has ever spoken with Paul has been enhanced by this experience. Paul spent his whole career being a champion of disability rights and fighting for equality for people of all races, religions and abilities. Although he was born a dwarf, he never lived small or felt sorry for himself. He enjoyed life in a big way and loved to spend time with his family, his friends, and helping people with disabilities have the same rights as everyone else. He was incredibly smart and he worked harder than anyone else just to prove that he was capable. And he was very capable. Paul Steven Miller worked for three Presidents: President Clinton, President George W. Bush, and President Obama. President Clinton appointed him to become a Commissioner of the EEOC (Equal Employment Opportunity Council). For President Obama he managed appointments in the Department of Justice and positions relating to Disability Programs. What an impact he’s had on thousands of people’s lives.

Meet Gabby our SoaringStar and spokesgirl:

SoaringStars Questions for Ill/ Special Needs Children:

  • What makes you feel strong?
  • What makes you feel happy or positive?
  • When you are scared or down, how do you make yourself feel better?
  • What are your favorite things? Hobbies? Interests? Things to do?
  • What advice do you have for other kids in hospitals or those that are at home because of an illness?
  • What is your favorite part about you? What would your parents or friends say makes you special?
  • Tell us a little about your life. What illness do you have, how long have you been ill?
  • Tell us your full name, address, age, and phone number. Please note: we will only include your first name and age in your profile on the website. We need this other information to send you the Soaringwords Youth Leadership Certificate. We are also profiling siblings, parents, caregivers, nurses, doctors, child life specialists, teachers and volunteers.

SoaringStars Questions for Siblings:

  • Tell us about your life. What are your favorite things?
  • How has having an ill/ special needs brother or sister affected you?
  • What have you done to be helpful to your brother and sister? How does this make you feel?
  • What advice do you have for other brothers and sisters with an ill/ special needs sibling?
  • Tell us your full name, address, age, and phone number. Please note: we will only include your first name and age in your profile on the website. We need this other information to send you the Soaringwords Youth Leadership Certificate.

SoaringStars Questions for Parents of Ill Children/ Special Needs Children

  • Describe your child’s illness or special needs.
  • Describe his or her personality. What makes them unique.
  • What makes you feel strong? Hopeful?
  • How do you keep joy in your life?
  • How do you maintain a positive attitude or hold onto gratitude? Do you have a motto, song, ritual that helps?
  • How do you give yourself time in the midst of caring for your child and other responsibilities you manage that allows you to feel like yourself, even for a few minutes?
  • What is the most unexpected thing you’ve discovered during this journey?
  • What were or are the blessings or the most surprisingly nicest thing that your child/family experienced during this time?
  • What advice do you have for other parents with ill/ special needs children? (List 10 things)
  • What did your friends/ family /teachers/ classmates do that was helpful?
  • What are the things that well-meaning people should NEVER say to an ill child/ special needs children?
  • What are the things that people should NEVER say to parents of an ill child/ special needs children?
  • Anything else you’d like to share?

Nominate a Nurse, Doctor, Child Life specialists, Volunteer or Teacher

Has there been a heroic person who has made a positive impact on the life of an ill or special needs child and his or her family? We want to know about these heroes who go “above and beyond” to inspire kids to “Never give up.” Send us a short paragraph explaining why this person is a SoaringStar. Please include their first and last name, their title, the hospital/school where they work/city and state. Please include a phone or email if you can. Send all responses to heal@soaringwords.org

Soaringwords Mission and Vision

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Soaringwords mission is to embrace hospitalized children, families and staff, encouraging positive health and healing. Soaringwords embraces ill children and their families both in person and online, providing fun, creative and educational modules based on positive psychology concepts that enhance well-being in the midst of illness. Soaringwords is unique because it is the only organization that motivates ill children and their families to “pay it forward” which fosters altruism, reciprocity, empathy, well-being and resilience.

SoaringQuilts® and SoaringPillows®

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There’s nothing more comforting than a soft, fluffy quilt and pillow. When kids are ill at home or in the hospital, they have to hang out in bed for a long time. You can help transform a child’s bed by adding a cozy, colorful quilt and pillow decorated with special messages and artwork. Your gift will help a child feel loved and supported and inspire them to heal. Imagine how much they will enjoy looking at all the different drawings and messages you created. This project is especially exciting because each person can decorate a quilt and pillow in their own unique way. For example, some people will pick a theme for the quilt and decorate all the patches with words or pictures about sports or nature. Other people have chosen the words from a nursery rhyme and illustrated it. To see photo gallery of the quilts and pillows click here. To get started watch the video or you can just read decorating instructions below. When you are finished decorating your quilt and pillow you can make a special SoaringBed message to tuck into your pillow pocket.

  

How to Decorate the Quilts and Pillows:
1. Read the Do’s and Don’ts below.
2. Use a piece of scrap paper to decide what you want to draw and write.
3. Fill up the whole white patch with your colorful drawing.
4. If you have a heart shaped pillow, use dark colors to decorate the front and the back of the pillow.
5. Make sure to include your name (first name is fine) on the bottom of your drawing.

Great Things to Say:

  • Thinking of You
  • You are a Star
  • To Brighten Your Day
  • Here’s a Big Smile for You
  • Hurray for You!
  • Hip Hip Hurray!
  • Awesome!
  • Excellent!
  • You’re Important
  • Sending You a ___________(name the thing you drew. It can be a rainbow, a panda, a poem, etc.)
  • Sending You Healing Energy
  • Sending You Love
  • Sending You a Giant Hug
  • Sending You a Joke (you can write a joke…Corny, easy to understand ones are the best)
  • Or, write your own message

55.-Childrens-Memorial-Hospital-150x15063.Texas-Childrens-Hospital2-150x15028.-New-Orleans-150x150

 Great Ideas for Artwork:

  • Space theme with planets
  • Animals (dogs, fish, pandas, ladybugs and other animals)
  • Nature (rainbow, sun, trees, flowers, beach, mountains, clouds)
  • Sports (basketball, baseball, hockey, football)
  • Popular figures (Sponge Bob, The Simpsons, Superheroes)
  • Words in bubble letters like COOL, LOVE

Great Theme Suggestions:  •  That 70s Quilt and Pillow  •  Lost at the Zoo •  Why did the Chicken Cross the Road and Other Funny Business •  Hope You Love my Stick Figures  •My work should be in the Metropolitan Museum of Art •  NASA would be proud of my artwork  •  Under the sea

Things NOT to Say:

  • Hope you get better soon
  • Get better soon
  • Get well soon
  • Hope you can go home soon
  • Hope you are not in pain
  • Don’t say anything religious like “God loves you…” or draw angels, since the patient may be from another religious background.

After You Decorate: You can give your special quilt and pillow to someone who is ill. Or, you can contact Soaringwords and we will collaborate with you have the quits and pillows donated to your local hospital.
917-499-3783     heal@soaringwords.org

SoaringSuperheroes

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Greatness is in everyone. Strength is in everyone. There’s an entire galaxy of stars, kids just like you who want to do something nice to make ill kids feel loved and supported. Everyone has a favorite action-hero or superhero. Which one is yours?  You can invent your own Superhero or choose a famous Superhero to share with ill kids. Your Superhero can be funny and have silly powers that can make an ill child smile and laugh. Your Superhero can be brave and strong, which can make an ill child feel less scared. Your Superhero can be really kind, which can make an ill child feel comforted. Its up to your imagination!

How to Get Started:
1. Choose what kind of Superhero you want to make: 
a)  Invent your own Superhero
b)  Choose a famous Superhero 
c)  Pick a hero or heroine from mythology 
d)  Select someone from real life.  This person can be someone you  know from your family, school, neighborhood, or someone  famous from the past or present.

2. Use Soaringwords Border to draw your Superhero.

3. Write the name of your Superhero on the top of the page and then draw your Superhero using lots of colors.

4. Write one or two sentences describing his or her superpowers. You can also write a message to an ill child from your Superhero.

5. Write your name and age on the bottom of the page.

IRB Senior Banana SoaringSuperhero

To see lots of examples of Superheroes created by kids like you, click here.

Pointers:
Do make your picture really big, bright and colorful. Fill the entire page with your picture and message.
Don’t include illness or death in your Superhero description.
Don’t write or draw anything violent.
Don’t write “Get Well Soon” or “Feel Better” because sometimes these messages can make an ill kid feel sad.

After You Finish Your Superhero:
You can give your Superhero to a child who is ill. Or, you can mail or email it to Soaringwords and we will share your Superhero with a hospitalized child and/or post it on our website. Soaringwords 54 West 40th Street
New York, N.Y. 10018 heal@soaringwords.org

Watch SoaringSuperheroes video to see other kids create their hero messages: