ISSUE #2 ABOUT MS AND FEELINGS A NEWSLETTER FOR KIDS ABOUT MULTIPLE SCLEROSIS ® 1 From time to time, people with MS may feel sad or cranky or angry about having MS. You may feel cranky or sad or angry too, about having MS in your family. Nobody likes MS, but there are lots of ways you can deal with your feelings. First, try talking to your mom and dad about how you feel about MS. They can help you under- stand your feel- ings and reassure you that it’s OK to be angry or fright- ened or confused about MS. Second, find other grown-ups you like to talk to… people you trust and who make you feel good just by being with them. It might be your teacher, your neighbor, your aunt or uncle or someone else! You will find that sharing your feelings with others can help to make you feel better! Also, find activi- ties that are fun for you to do, like sports, arts and crafts, games, walking your dog or playing with friends. These are fun ways to use your energy, and having MS in your family doesn’t mean you can’t have fun! The most important thing to remem- ber is that having MS doesn’t change one very important thing about your family at all-- your mom or dad will always love you and keep you safe. They want to know when you are curious, worried, or scared, and they want you to feel OK about having feelings about MS.
Transcript
ISSUE #2 ABOUT MS AND FEELINGS
A NEWSLETTER FOR KIDS ABOUT MULTIPLE SCLEROSIS
®
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From time to time, people with MSmay feel sad or cranky or angry abouthaving MS. You may feel cranky or sad
or angry too, abouthaving MS in
your family.Nobody likesMS, but there
are lots ofways you can deal
with your feelings.
First, try talking to yourmom and dad about how you feelabout MS. They canhelp you under-stand your feel-ings andreassure youthat it’s OKto be angryor fright-ened or confused aboutMS. Second, find other grown-ups youlike to talk to… people you trust and
who make you feel good just by
being with them. It might be yourteacher, your neighbor, youraunt or uncle or someone else!
You will find that sharingyour feelings with otherscan help to make you feelbetter! Also, find activi-ties that are fun for youto do, like sports, arts
and crafts, games, walking your dog orplaying with friends. These are funways to use your energy, and havingMS in your family doesn’t mean youcan’t have fun!
The most important thing to remem-ber is that having MS doesn’t change
one very important thingabout your family at all--your mom or dad will
always love you and keepyou safe. They want to
know when you are curious, worried, orscared, and they want you to feel OKabout having feelings about MS.
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Multiple sclerosis (MSfor short) is a diseasethat affects the centralnervous system (thebrain, optic nerve andthe spinal cord). Thebrain is like a computerthat tells the body whatto do. The spinal cord islike a thick wireattached to the comput-er. Messages travel fromthe brain, along thespinal cord, to the otherparts of the body.
When a person has MS,the covering (myelin)that protects the nervesgets damaged. Scarsform where the myelin isdamaged. As messagestravel from the brain,they sometimes get stuckor slowed down by these scars. When this happens,
the other parts of thebody can’t always dowhat the brain is tellingthem to do.
Sometimes people withMS have trouble seeing.Sometimes their armsand legs feel weak, ortheir skin feels“tingly”(like p i n s a n dneedles). Sometimes theylose their balance, orsometimes it’s hard towalk. MS problems likethese are called “symp-toms.” Symptoms of MScan come and go…wedon’t know exactly why.Sometimes you don’teven notice the symp-toms. At other timesthey are pretty obvious.It’s hard for a personwith MS to know fromone day to the next howhe or she will feel. Thatis why we say that MS isunpredictable.
MS
Brain Spinal Cord
Optic Nerve
Nerves
Spinal Cord
Myelin
MS Scar
We love to publish yourpictures, stories andpoems, and interviewsabout MS. Please send usyour work! Tell us howyour family learns aboutMS together, how youfeel about having MS inyour family, what adviceyou would give otherkids about having a momor dad with MS, how youhelp your mom or dad, orwhom you talk withabout MS.
■ Cut out the FeelingsFaces.■ Mix up the cards andlay them face down.■ Begin by turning overtwo cards to try to makea match.■ If the cards DO match,set that pair aside untilthe game is over. Takeanother turn.■ If the cards do NOTmatch, turn them backover. Now it is the nextplayer's turn. ■ Continue to take turns.The game ends when allthe faces have beenmatched and there are nomore cards to turn over.
Have fun!
DIRECTIONS
GAME
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Sometimes MS makes my mom drop things.She gets mad at MS. She's not mad at me.
1. What questions do you have about MS?
2. How would you help other kids deal with their feelings about MS?
3. Who do you talk with about MS? Why do you choose that person?
My name is ___________________________________________ My age is _____
My address is ________________________________________________________Street City State Zip
My phone number is (____________) ___________________________________area code
We know you like to hearwhat other kids think andfeel about MS. Youranswers to the questionsbelow could show up inthe next Keep S'myelin.
FORYOU TOSHAREWITH OTHER KIDS
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PARENTS' PULL OUT
This issue of KeepS’myelin is all about feel-ings. As you share thestories and activities withyour children, you mightwant to reflect on someof your own feelings andhelp your kids identifytheirs. This is a chance toshare and compare.
Kids sometimes have ahard time giving a nameto their feelings or know-ing what's making themfeel upset or cranky.Perhaps Galen’s story willgive them some ideasabout the feelings theyare having. They mighteven want to try makingup a story of their ownusing the feeling wordsthey find in the wordsearch.
You may find that read-ing and talking about feelings is difficult for you—
that you become teary orupset. Keep in mind that itis OK for your children tosee your feelings. Whenyou show feelings and talkabout them, you are mod-eling ways for your kids todeal with their ownuncomfortable feelings.If either you or your chil-dren are having a very dif-ficult time dealing withfeelings about MS, remem-ber that your chapter ofthe National MS Societycan provide you withnames of mental healthprofessionals in your area.
Parents and children liv-ing with MS may be sur-prised to discover theyhave happy feelings aswell as sad or angry ones.It's just as important toshare the positive feelingsas the more painful ones.
Perhaps you feel proud ofyour own ability to prob-lem solve and meet theMS challenge, or of yourchildren's increased sensi-tivity to the needs of peo-ple with disabilities.
Maybe you've sharedsome special cuddle timesduring those all importantrest periods, or found thathaving to slow down a bithas allowed you to talkmore with one another.You may even find thatyour family is able toenjoy some special jokesabout life with MS—jokesthat no one else couldappreciate in just the sameway! Don't forget to makethe most of this lighterside of life with MS.
ISSUE #2 ABOUT MS AND FEELINGS
Laughteris good
for everyone.
PARENTS' PULL OUT
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You can let your childknow that it's natural tofeel this way and that youfeel the same way too. Ifyou found an answerthat works for you, con-sider sharing it withyour child. If not,you might affirmthat you don't likehaving MS inyour family either,but that MS is apart of your fami-ly’s life. Reassureyour child that byworking together,your family is cop-ing with life withMS.
.
You have feelings abouthaving MS. Your childrenhave feelings about MS,too. Some kids will lettheir parents know abouttheir feelings. Other kidstend to keep their feelingsto themselves. Every kidis different.
Children notice your feelings. Kids sometimes think MSis a disease of crankiness.For adults with MS,there's certainly plenty tobe cranky about! Explainto your child that you areg rouchy or cranky becauseMS makes you feel tiredor uncomfortable, but thatyou are not angry at himor her. You might also saythat you are working atnot being so gro u c h y. Thismight be a good opportu-nity to talk about MSsymptoms with your child.
Children who have a par-ent with MS may see theirfamily as different fromtheir friends’ families.They may have morechores and responsibilitiesthan their friends. Theparent with MS may needmore assistance than theparents of their friends.
Although for the mostpart these differences aretaken in stride, kids willoften say that it's "unfair"that it's their mom or dadwho has the MS, and"why couldn't it havebeen someone else's momor dad?" It's not that easyfor parents to respond tothese questions, becauseit's likely that you havetruggled with thesame kinds of ques-tions!
RESPONDING TO YOUR CHILD
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PARENTS' PULL OUT
Kids' fears regarding theirparent's MS may be verydifferent than their parents' fears. Kids tend to apply whatthey know about other ill-
nesses to MS. Theyhave heard aboutpeople dying fromillnesses like heartdisease and cancer. It's natural for them to be
afraid that you will die from MS.They might applyother aspects of illness as well,
and worry that MSis contagious, like
chicken pox, or the flu. It's important to
encourage your child totell you when he or she is
afraid or concernedabout MS.
Children often becomeangry when things don'twork out the way theywould like.Experiencing and learning
to manageanger arepart ofgrowing up.It is natural
that yourchild will be
angry that you haveMS. Young childrenmay sometimes direct
this anger at you.Although this mayhurt your feelings, youcan help your child
direct his or heranger at the disease
by sharing your ownfeelings about MS. Youmight explain that itmakes you angry whenMS interferes with thethings you want to do.Rather than fight againstyour child's anger, try tojoin with your child.
Most parents wish toprotect their children fromtheir own sadness.It is likely that there aretimes when your child feelssad about it as well. Whenyour child feels sad aboutMS, try to acknowledge thefeeling, and let him or herknow that it is okay.Sometimes kids just need tofeel sad for a while. Youdon't need to try to fixthings, provide a distrac-tion, or cheer him or herup. It is helpful for
your child toknow you arethere.
HILD’S FEELINGS ABOUT MS
KEEP S’MYELINis available on line at www.nationalMSsociety.orgYou can e-mail us at: [email protected]
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PARENTS' PULL OUT
Keep S'myelin is a quarterly publication for children with par-ents or other relatives with multiple sclerosis. It is producedby the National Multiple Sclerosis Society. The NationalMultiple Sclerosis Society is proud to be a source of informa-tion about multiple sclerosis. Our comments are based onprofessional advice, published experience and expert opinion,but do not represent therapeutic recommendations or pre-scriptions. For specific information and advice, consult aqualified physician.
The National Multiple Sclerosis Society does not endorseproducts, services, or manufacturers. Such names appear heresolely because they are considered valuable information. TheSociety assumes no liability whatsoever for the contents or useof any product or service mentioned.
This issue is made possible through the support of the follow-ing Program Honor Roll chapters: Central New England,Central Pennsylvania, Gateway Area, Greater Connecticut,Greater Delaware Valley, Greater Washington, Indiana State,and Mid-Atlantic.
EditorsRosalind Kalb, PhD Kimberly Koch, MPA
Design/IllustrationsClaude Martinot Design
The mission of theNational Multiple
Sclerosis Society is toend the devastating effects
Please give us feedback.Send your questions or ideas to:KEEP S’MYELINNational MS Society700 Broadway Suite 810Denver CO [email protected]
LET’S MAKE...
What you need:Celery stalks, Peanut butter, Raisins
Preparation:• Wash the celery stalks thoroughly.• Cut the ends off as needed.• Peel the celery for younger children.
With a spoon or a safe butter knife, spread the peanutbutter into the celery stalk. Place raisins in a row on top.You may want to put other things, like yogurt-coveredraisins, or fill the celery with other healthy spreads. Justbe sure to have fun! Cut the stalks into bite size piecesand chew carefully.
Ants on a Log
Cooking can be a familyproject that bringseveryone close togetherand can be a specialtime of learning for chil-dren of all ages. Childrencan learn organization,healthy eating habits,safety, and most impor-tantly, independence.Here is a recipe yourfamily might like to try.
Contact your National MS Society chapter at 1-800-344-4867.
