Talking about MS: Multiple Sclerosis Society of …Multiple Sclerosis: A Guide for Families, 3rd edition. Rosalind Kalb, Ph.D., Demos Medical Publishing, New York, New York. 2006 This

Our Mission

To be a leader in finding a cure formultiple sclerosis and enabling people

affected by MS to enhance their quality of life.

C50E/14 Offert en français.

Contact the Multiple Sclerosis Society of Canada:

Toll-free in Canada: 1-800-268-7582

Email: [email protected]

Website: www.mssociety.ca

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Talking about MS:A Guide for Families


The following resources were adapted, with permission, to develop thisbooklet: Talking with your kids about MS (MS Trust, 2010) and How toTalk About MS with Your Children (MS Society of Canada, 2001).

Canadian adaptation: Jennifer McDonell

Further acknowledgments: Special thanks to Jason Shein, Gillian Gunn, MSW, The Hospital for Sick Children, Toronto, Ontario and Jennifer Boyd, RN,

MHSc, CNN(C), MSCN, The Hospital for Sick Children, Toronto, Ontario fortheir contributions.

This publication was made possible through the generosity of the Estate ofStella Shein and the Shein Family.

TALKING ABOUT MS: A GUIDE FOR FAMILIES

Multiple Sclerosis Society of Canada(National Client Services and Research), 2014Legal Deposit -National Library of Canada

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NOTES

The following resources were adapted, with permission, to develop thisbooklet: Talking with your kids about MS (MS Trust, 2010) and How toTalk About MS with Your Children (MS Society of Canada, 2001).

Canadian adaptation: Jennifer McDonell

Further acknowledgments: Special thanks to Gillian Gunn, MSW, RSW,The Hospital for Sick Children, Toronto, Ontario and Jennifer Boyd, RN,MHSc, CNN(C), MSCN, The Hospital for Sick Children, Toronto, Ontario fortheir contributions.

Design and Publishing: Greenwood Tamad Inc.

ISBN: 978-1-926803-11-1


Multiple Sclerosis Society of Canada(National Client Services and Research), 2014Legal Deposit -National Library of Canada


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NOTES


RSW,

Design and Publishing: Greenwood Tamad Inc.

ISBN: 978-1-926803-11-1

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Table of Contents

Introduction ........................................................................3 Before you talk to your children .....................................4 TALKING ABOUT MS FOR THE FIRST TIME ......................5 KEEP TALKING .....................................................................7 HOW WILL THEY REACT? ...................................................8 WHAT SHOULD I TELL MY KIDS ABOUT MS? ...................9

What’s going to happen? ............................................9 How did you get MS and will I get it? ...................10 Can you die from MS? ...............................................10 Is it my fault that you got MS? ...............................11

GENERAL REACTIONS TO A PARENT’S DIAGNOSIS .......12 Shock ...........................................................................12 Denial ..........................................................................13 Anger & frustration ...................................................13 Sadness .......................................................................14

REACTIONS BY AGE ..........................................................14 A word on teenagers ................................................17 Young caregivers .......................................................18

DEVELOPING A CARE PLAN ............................................19


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Symptoms or situations that may affectyour children ....................................................................20

Fatigue..........................................................................20 Loss of balance and mobility limitations ...............20 Heat sensitivity (Uhtoff’s phenomena) ....................21Emotional or mood changes .....................................22

EMERGENCY OR CRISIS PLAN ........................................23FINDING THE POSITIVES .................................................24SUGGESTED RESOURCES ................................................25

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Multiple Sclerosis: A Guide for Families, 3rd edition. RosalindKalb, Ph.D., Demos Medical Publishing, New York, New York.2006

This book describes strategies and resources available toeffectively help families manage living with MS.

Medikidz Explain Multiple Sclerosis, 2012.

Medikidz is an educational comic book about MS geared tochildren and teens aged 8 to 15. To obtain a copy pleasecontact your MS Society Division office at 1-800-268-7582.


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IntroductionLiving with MS can be difficult and at times frightening,especially when you are newly diagnosed. While you may bethe person diagnosed with MS, the diagnosis can affect thewhole family. Each family is unique and each person’sexperience of MS will be different.

Many parents with MS question when, what and how to telltheir children about their diagnosis. Some parents choose notto tell their children right away because they don’t want toworry or scare them. Studies have shown that children knowwhen something is wrong, even when parents try their best toconceal the truth. Children are quick to notice physical andemotional changes and can sense anxiety in the home. Whenchildren are not told about MS, they may seek answers usingtheir imagination. This can sometimes lead to self-blame forthe perceived physical and emotional changes in their parent.

It’s natural to want to protect your children. If your symptomsare mild, you may prefer not to tell them about your MS rightaway. Your decision will depend on the age of your childrenand how you usually talk to them about health and otherissues that arise in the family.


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Before you talk to your children Following a diagnosis, it is common for people to experienceanger, fear, sadness and confusion. Typically, people need timeto work through some of these feelings and consider what MSmeans to them before they feel ready to talk about it withtheir children and other family members. This time alsoprovides an opportunity for parents to learn as much aspossible about MS – not only for their own knowledge, butalso in preparation for the discussions that lie ahead with theirchildren. A parent knows their child’s personality and emotionsbest, and will know when they are ready to talk about MS. TheMS Society has a wide variety of resources to help educatethose affected by MS; however, no parent will ever have all theanswers. It is okay to tell your children that you don’t have theanswers to certain questions.

Children should be included in discussions, encouraged to talkabout their own feelings and made to feel that their opinionsor concerns matter. They need to be able to trust you, andbeing honest with them will help to achieve that. Keepingthings hidden can be very stressful, and it is often a relief toget things out in the open.

Children can be very supportive, and they may surprise you bydoing or saying something that shows they understand. Not allchildren will demonstrate understanding; some may appearunconcerned and, like some adults, try to ignore the issue.Others may have a more negative reaction – they may express

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SUGGESTED RESOURCESMultiple Sclerosis: Its Effects on you and those you loveMS Society of Canada, 2014.

A resource that answers some of the most frequently askedquestions about the disease and also describes effectivecoping mechanisms.

Keep S’MyelinMS Society of Canada and National MS Society, 2006.

A colourful activity book for children of parents with MS,intended to help children find answers to questions about MS.

When a Parent has MS: A Teenager’s GuideNational MS Society, 2014.

http://www.nationalmssociety.org/NationalMSSociety/media/MSNationalFiles/Brochures/Brochure-When-a-Parent-Has-MS-A-Teenagers-Guide.pdf

Keep S’Myelin NewsletterNational MS Society - english only

Keep Your BalanceMS Society of Canada, 2006.

A colourful publication for teens, which includes basicinformation about MS and testimonies from teens who have aparent with MS.

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FINDING THE POSITIVESAny life-changing experience can alter your perspective on life.Children can gain from their experiences of having a parentwith MS. Many children grow up with a greater sensitivity tothe needs of others.

Children often enjoy quality time with a parent, doing thingslike talking, reading or playing games on a PlayStation or Wii,all of which can improve the quality of the relationship.Children may need to learn to be more independent thanothers their age, and it is well established that increased skillslead to greater self-esteem, coping ability and confidence. Theywill grow up with a better understanding of health and how tocope with negative emotions.


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indifference, hostility or become withdrawn. These are allnormal responses. Be prepared that children processinformation differently than adults and they may bring upfeelings, questions and/or concerns at unexpected times.

TALKING ABOUT MS FOR THE FIRST TIME Talking about MS for the first time can be scary; you might findit helpful to talk through what you plan to say with yourpartner or a friend first. Many parents prefer not to have aformal family meeting. If you have more than one child, it maybe best to tell them all at the same time so that they start withthe same information. You can talk to them individually at alater date when needed.

You must take the lead in talking about MS. Some childrenwon’t ask questions, especially if they are worried aboutupsetting you. There are several factors that might influencewhen you decide to have the first talk about MS.‹ the ages of your children‹ the type of MS you have‹ your relationship with each child‹ your own personal feelings about MS

The first talk you have with your children about MS isimportant. It opens up the subject for discussion and sets thetone for further conversations. If you are overly positive theymight think that they can’t admit their own negative feelings.


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It is better to admit that you don’t have all of the answers; ifyou tell them things that are not true, they may find out andfeel unable to believe your reassurances in the future.

Don’t try to cover everything in the first conversation. Keep itsimple. The most important message is that while things mightchange, you will always love and care for them. Depending ontheir age, you may want to ask them if they know anythingabout MS so you can correct any misunderstandings.

Older children may overhear conversations about MS, and itmay be helpful to speak to them about it sooner than later.You could explain that multiple sclerosis or MS is a name forsome of the health problems you’ve been experiencing. It maybe helpful to link symptoms such as fatigue and forgetfulnesswith MS, and tell them how these might affect you and thefamily.

Younger children may find the mechanics of MS too difficult tounderstand, and it may be helpful to talk about physicalsymptoms as they come up. Some children will accept a shortchat and happily resume playing. If this is the case for you,don’t push them to talk, as they may need time to processwhat you have told them. The important message is that all oftheir feelings and questions are fine and that MS can be talkedabout as much or as little as they need.


EMERGENCY OR CRISIS PLANIf you need to unexpectedly go in to hospital, it is best to havea plan in place to lessen the potential impact your absence willhave on your family. As a family, discuss what might happen ifyou must go in to hospital for a while. Children should becomfortable with the plan and help make some of thedecisions where possible. If a guardian is required, try to findsomeone who knows the family and family home well.Sometimes this is not possible, so once an appropriateguardian is identified it might be a good idea to have themjoin the family for dinners and other family activities so thatthe children can get used to having them around.

Make sure important phone numbers and other contacts arereadily accessible to the guardian and ensure that they arewell-versed in any morning, school or bedtime routines.

If you do need to go in to hospital, maintaining daily contactwith your children is very important, either through hospitalvisits or phone calls. Some children are fine in a hospitalenvironment but others may not be comfortable with it.Although it may be hard, their preferences should be respectedand they should be encouraged to talk about their feelings.

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Cognition

Invisible symptoms are difficult for children to understand. Ifyou have a problem with memory, your children maymisinterpret forgetfulness and assume you aren’t payingattention. It is important to let your children know that you arepaying attention but that sometimes MS can make youforgetful. Keeping a family calendar or reminders on yourpersonal device will be helpful to keep track of activities andappointments. If you feel as though the cognitive changes arebecoming more difficult to manage you may want to speak toyour doctor about a cognitive assessment, which can identifyareas of difficulty and ways to manage them.

Emotional or mood changes

Mood disturbances can be hard on children, especially moodswings, quick-tempers and bouts of irritability. Children usuallyassume they have caused the altered mood, but they should bereassured that not all emotional changes are because of them.At the same time, it’s important to let them know thatsometimes their behaviour can upset you and that noteverything is related to the MS.

Depression is more common in people living with MS than thegeneral population and can be particularly troublesome forfamilies, as it can impact how children are parented. For singleparents, it is important to have a support network to avoidrelying too heavily on the emotional support andcompanionship of your children. Talk to your doctor if you arefeeling depressed. Depression can be managed successfullywith medication and therapy.


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KEEP TALKINGTalking about MS is not a one-time occurrence. MS isunpredictable and can lead to continual changes in family life.Children need to be reassured during these times of changethat their basic needs to be loved, fed and housed will alwaysbe met, regardless of how the disease progresses.

There may be times when you experience strong emotions likefear, anger or sadness, which you may want to hide from yourchildren. Despite efforts to hide such feelings, children willlikely notice them. They may also want to hide their feelingsfrom you. Being honest with your children about what ismaking you feel sad may reassure them that the feelings arenot directed at or caused by them. This may also give them anopportunity to share their feelings with you. Some parents feelthat MS has brought them closer with their children. As theygrow up, their understanding of MS will change. They may askfor more detailed information, so it’s important to keep thelines of communication open.

Some children may feel more comfortable turning to the parentwho does not have MS, a grandparent or a family friend forsupport. They may also choose to talk to a sibling rather than a parent.

Sometimes children may ask questions that upset you. While itis important to be open and honest with your children, it isessential that they don’t stop asking questions for fear ofupsetting you. If a question or comment takes you by surprise,


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it might be helpful to say something like, “That’s a goodquestion, but I need some time to think about it. Can we talkabout it later?” This will give you time to deal with yourimmediate emotional reaction and think about how torespond. It’s important that your children know they can talkfreely about MS, including their feelings about it.

HOW WILL THEY REACT?Evidence shows that children can usually cope with quite a lotof information when adults are open and honest, and whenchildren are made to feel that their feelings and opinions areimportant. Everybody experiences negative feelings in life, andchildren need to learn to cope with upsetting things. Givingyour children the ability to understand and express theirnegative emotions about MS provides good skills for life.

Some children will seem completely unaffected by a parent’sdiagnosis; others may become withdrawn or demonstratechanges in their behaviour. All these reactions are normal, andchildren need to be reassured that whatever they are feeling isreasonable and most likely how other children might feel in thesame situation. You can help them most by expressing yourown feelings, happy or sad.


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uncertainty they may have around it. If you have fallen in theirpresence, they may feel more secure about your safetyknowing you are using your wheelchair, scooter, cane or othermobility aid.

Heat sensitivity (Uhtoff’s phenomena)

Many people with MS experience sensitivity to increased bodytemperature, which can temporarily cause symptoms to flareup. Demyelinated fibers in the central nervous system can bevery sensitive to even small elevations of core bodytemperature resulting in conduction (nerve impulse) delays oreven conduction block. This sensitivity can be brought out byprolonged exposure to heat such as sunbathing, hot weather,hot baths/showers and saunas, exercise, fever (from illness orinfection), or any other factor associated with an increase inbody core temperature. Once the body temperature returns tonormal, the symptoms generally subside.

Avoid illness by encouraging hand washing for the wholefamily, and to keep cool parent(s) may find some benefit inusing:‹ fans, air conditioners and keeping windows open ‹ wearing cooling vests/head wear ‹ choosing activities for play time with the kids in pools‹ during rest times, have ice chips or ice water


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Symptoms or situations that may affect your children

Fatigue

Fatigue is one of the most common and disrupting MSsymptoms. Approximately 90 per cent of people with MS willexperience fatigue over the course of the disease. Children mayfind it difficult to understand why their parent requires extratime to rest. Let your children know that MS can make somepeople feel very tired and that you need a little extra “quiet”or rest time. Parents with infants and toddlers may need to askfor extra help from other family members or close friends tomanage fatigue. It may also be helpful for the parent livingwith MS to work with their MS care team to optimize theirfatigue management through medication and energyconservation strategies to reduce its impact on family activities.

Loss of balance and mobility limitations

Parents with mobility issues may find it more challenging toplay with their children like they did before MS. There are manyways to adapt activities so that parents are still able to playwith their children. For example, you may want to play catch orbasketball with children from a seated position. The importantthing is to spend time with your children doing things youenjoy doing together.

Children may be unsure about mobility aids at first. If you usea mobility aid, encourage them to become familiar with itthrough supervised use or play to help remove any fear or



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WHAT SHOULD I TELL MY KIDS ABOUT MS?Conversations about MS with younger children may be muchsimpler and shorter than conversations with older children andteenagers. Your children are unique individuals, and they mayask many interesting and challenging questions.

The following questions about MS are asked most frequentlyby children:

Most children will want to know if the MS will get worse andif it will affect their lives. They may worry about what willhappen to them if you have to be hospitalized and can’t lookafter them. It is important to acknowledge the unpredictabilityof MS and also admit that it worries you too. Reassure themthat they will always be involved in decision-making when bigchanges occur.

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Children will ask why a parent has MS, and they will oftenwonder if they will get it too. Younger children may only befamiliar with infectious illnesses like colds or the stomach flu;they may presume MS is contagious and then worry that theywill get it through physical contact. Older children may bemore aware of genetics and may be concerned that they willinherit it. You can explain that MS is not contagious and that,while some families have more than one person living withMS, it is actually not very common.

Most children who are old enough to understand that peopledie will want to know if you can die from MS. They needreassurance that although MS can sometimes make peoplevery sick, this does not happen very often. The vast majority ofpeople with MS will live a long life.

How did you get MS and will I get it?

Can you die from MS?


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DEVELOPING A CARE PLANCare plans provide caregivers, care recipients and other familymembers and friends with a regular yet flexible routineoutlining the roles and responsibilities of everyone involved inthe care of the person with MS.

Care plans can also assist with the day-to-day management ofthe household, which may provide primary caregivers with alittle respite.

Start by making three separate lists. The first list should includedaily caregiving responsibilities. The second list should includeeveryone’s daily self-care activities (i.e., physical, emotional andspiritual activities). The final list should include householdmanagement activities that take place on a daily, weekly ormonthly basis (i.e., grocery shopping, house cleaning and yardmaintenance).

The goal of a care plan is to achieve balance betweencaregiving, household and self-care activities. Here are a fewtips on achieving this balance: ‹ Hold a family meeting to discuss responsibility sharing, and

where possible delegate responsibilities so that everyone issomehow involved.

‹ Adapt spaces around your home to encourageindependence of the parent with MS and other familymembers.

‹ Some caregivers take on more than they need to becausefamily members fail to communicate effectively; don’t beafraid to ask for help. Everyone has a limit, and you need torecognize and communicate your boundaries.


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If any of these behaviours are suspected, it is important toaddress them right away. School counselors or family doctorscan help to identify the appropriate guidance.

Young caregivers

Some of the added responsibilities that children and teens takeon may also include providing care for younger siblings andthe parent living with MS. There are some caregiving activitiesthat children should not perform when possible, such as thepersonal care activities (bathing, bladder and bowel care) oftheir parent. This can be uncomfortable for both the youngcaregiver and the parent.

Some young caregivers become the primary caregiver for theirparent, which can impact their school work, social andpersonal development. A balance should be establishedbetween their caregiving responsibilities and living their ownlives. Developing a care plan with children or teens in acaregiving role will help to maintain that balance – with theunderstanding that there may be times when the plan needs tobe flexible to accommodate the unpredictability that MS cansometimes bring. It is important that teens feel they cancommunicate their stress, and to talk about it before itbecomes overwhelming. Encourage them to find activities thatwill help relieve stress such as exercising, hanging out withfriends, talking to someone about their feelings (a socialworker, teacher, guidance counsellor, etc.) or simply puttingaside time for themselves to do something they enjoy doing.



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Younger children relate everything to themselves, and they mayworry that they have caused the MS. Some people may relateMS to life events such as pregnancy and birth. They may say,“My MS was fine until my son was two” or “My MS got worseafter I had my first child.” Children may misunderstand thesestatements to mean that they were the cause of your MS.Remind them that MS is no one’s fault and that if they behavebadly, it may make you angry, but it won’t make your MSworse. If you feel that your children are trying too hard, letthem know that you appreciate their efforts but that goodbehaviour won’t change your MS.

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GENERAL REACTIONS TO A PARENT’S DIAGNOSISDepending on their age, children may go through the samestages of grief you went through after your diagnosis. Thefollowing is a common sequence of reactions that children mayexperience when you tell them about your diagnosis. For manychildren, the sequence is not linear and they may experiencethese responses in a different order or move back and forthbetween stages. This is normal.

Shock

Depending on the age of your children, they may be surprisedor shocked to learn of your MS, especially if there are no visiblesymptoms. Children may deal with shock differently. Some maynot have the skills to effectively communicate their emotionsand instead will act out at school or home. Some may notreact at all, either because they are hiding their feelings orthey do not understand what you have told them.

MS can mean many different things to children. It is importantto find out your child’s understanding of the situation. Theymay be worried and scared. This is expected and normal. Theymay ask you the same questions over and over again. Bepatient with them – as you repeat the information they willstart to feel reassured.

If your child is not asking questions, it may be helpful to askhim/her open-ended questions such as, “What’s it like for you,knowing about my diagnosis” or “What do you feel/think



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A word on teenagers

In families affected by MS, many teenagers take on addedresponsibilities at home, both in relationships and choresaround the family home. These responsibilities will generallyenhance their maturity and foster greater independence. At thesame time, however, the extra responsibilities at home canhinder their personal development because it is important foryoung adults to begin taking on new responsibilities outsidethe home.

In addition, when a teen must stay at home to help withchores and other family business, he or she will have less timeto spend with friends at a time when friends play a critical rolein his or her life. They may feel different and isolated. It’simportant to give teenagers opportunities to socialize withtheir friends and to engage in activities of their choice. Whenthere are any big changes that occur to the family, teenagersshould be involved in the planning process as it will likelyimpact their daily or weekly routines. Teens should beencouraged to live their lives and participate in extra-curricularactivities, take on part-time jobs, engage in social or sportsclubs and hang out with friends outside the home to provide abalance between the added work at home and their ownpersonal development.

The usual teenager issues should be addressed early on, assome teens may turn to certain self-harming behaviours as away of coping, including alcohol and other substance use,promiscuous sexual activity, anti-social behaviour and mentalhealth issues including depression, anxiety or eating disorders.


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6-12years

Understanding a diseaselike MS may still bechallenging in this agerange. Recognize that an illness can have morethan one symptom. More aware of helpingout when asked. Can assume moreresponsibility at home.

• Aggressiveness• Sadness• Excessive fear• Feeling of heavyresponsibility

• Guilt• Problems at school

Teen-agers

Trying to define theirown identity.Tend to distancethemselves from theirparents at this age butin doing so may feelguilty if they think they need to be at home to help.

• Apprehensivenessabout the future

• Lack of motivation• Difficulties at school• Behavioural problems

Age Developmental Red flags: stage Things to watch for



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about it?” to get the conversation going and to gauge theirlevel of understanding. These questions will make him/herrecognize that it is okay to be scared and that talking about itis helpful.

Denial

After learning about the diagnosis, it is normal for children toact as though nothing has happened. They may not askquestions because they think that if they ignore it, it will goaway. Some children may act out at school or home, whileothers may express themselves through drawings or play. Somedenial is helpful as a coping strategy early on, but at somepoint it is helpful for them to express their emotions.

Anger & frustration

MS can disrupt usual family business. Children may be askedto take on more responsibilities at home; planned family orextra-curricular activities may have to be postponed orcancelled. Income loss may impact standards of living, and the child may feel a lack of attention from one or both parents.Children will react differently depending on what they havelost (i.e., missing a hockey game or a planned family trip to the zoo). They may give the impression that they are upsetwith you, when really these feelings of anger are directed at the MS.

If children become physically or verbally aggressive towardsother members of the family, including the parent living withMS, additional support is usually required. In these situations, afamily doctor will be able to recommend a family or individual


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therapist. It is best to find a therapist who has worked withfamilies who are affected by MS or other chronic conditions.Your local mental health agency may also be a helpful resourceat no cost. To find the nearest location visit the CanadianMental Health Association at www.cmha.ca.

Sadness

Children may feel sad and guilty. They will want the MS to goaway and have the “old” you back. They may feel guilty forbeing angry at you when you are sick and decide that they areresponsible for your relapses. Encourage them to express theirhurt feelings and at the same time make sure they understandthey are not responsible for your MS.

Some children will not cope as well and may need additionalhelp. Not all of their behaviour will be due to MS. Somechanges in behaviour may reflect other issues, like the birth ofa new sibling or a problem at school. If you talk to yourchildren about MS as they grow up, you will be in a betterposition to judge whether their behaviour represents a seriousproblem.

REACTIONS BY AGEWhat and how you tell a child about MS will depend on theirage and intellectual maturity. In addition, a parent’s state ofmind will have a major impact on a child at any stage ofdevelopment. The following section discusses thedevelopmental stages linked to children’s understanding of MS, including their possible reactions.



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0-3years

Child is affected bychanges that occur tothem personally.Separation fromparent(s) is their biggestconcern.

• Regression (going backto bottles, pacifiers,diapers)

• Separation anxiety• Agitation• More frequent crying orincreased irritability

3-6years

Children in this age arestill self-centred.Understand concepts ofright and wrong, goodand bad, etc. TIP: Role playing anddrawing pictures of the“good” cells and the“bad” cells, andexplaining that medicinehelps the good cellsbeat the bad cells maybe helpful.

• Aggressiveness• Guilt• Nightmares• Fear of abandonment• Complaining aboutvarious ailments



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Our Mission

To be a leader in finding a cure formultiple sclerosis and enabling people

affected by MS to enhance their quality of life.

C50E/14 Offert en français.

Contact the Multiple Sclerosis Society of Canada:

Toll-free in Canada: 1-800-268-7582

Email: [email protected]

Website: www.mssociety.ca


Talking about MS:A Guide for Families


Talking about MS: Multiple Sclerosis Society of …Multiple Sclerosis: A Guide for Families, 3rd edition. Rosalind Kalb, Ph.D., Demos Medical Publishing, New York, New York. 2006 This

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