ISSUE #5/FAMILY LIFE AND MS A NEWSLETTER FOR KIDS ABOUT MULTIPLE SCLEROSIS Living with MS brings changes to every member of a family. Some changes may be big; others may be small. Some changes are easy to deal with. Others are harder and take longer to get used to. Because MS is different for each person that has it, dif- ferent families deal with different changes. Many times, family members take on new responsibilities because of MS. For example, maybe you’ve had to do more chores since your mom or dad got MS. Maybe your dad has start- ed doing the laundry because your mom is so tired from the MS. Or maybe your grandmother takes you to school because your dad is not able to drive anymore. Each person in a family reacts in his or her own way to the changes MS brings. Be honest about how you are feeling. Whether you feel confi- dent, sad, angry, or con- fused, it is important to share your feelings with your family, a teacher, or a good friend. Your family members are able to love and support you whether or not they have MS. Remember, having MS in your family can strengthen your love for one another. Show it and share it. 1 ®
Transcript
ISSUE #5/FAMILY LIFE AND MS
A NEWSLETTER FOR KIDS ABOUT MULTIPLE SCLEROSIS
Living withMS bringschanges toevery memberof a family.Some changesmay be big;others may besmall. Some changes areeasy to deal with. Othersare harder and takelonger to getused to.
Because MSis different foreach personthat has it, dif-ferent families deal withdifferent changes.
Many times, familymembers take on newresponsibilitiesbecause of MS. Forexample, maybeyou’ve had to
do more chores since yourmom or dad got MS.Maybe your dad has start-ed doing the laundry
because yourmom is sotired from theMS. Ormaybe your
grandmothertakes you to schoolbecause your dad is notable to drive anymore.
Each person in a familyreacts in his or her ownway to the changes MS
brings. Be honest abouthow you are feeling.Whether you feel confi-dent, sad, angry, or con-fused, it is important toshare your feelings withyour family, a teacher, ora good friend.
Your family members areable to love and supportyou whether or not theyhave MS. Remember,having MS in your family
can strengthen your lovefor one another. Show itand share it.
1
®
2222
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 pins and needles).S o m etimes they lose theirbalance, or sometimesit’s hard to walk. MSproblems like these arecalled “symptoms.”Symptoms of MS cancome and go…we don’tknow 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 about MS. Pleasesend us your work! Tell ushow your family learnsabout MS together, howyou feel about having MSin your family, whatadvice you would giveother kids about havinga mom or dad with MS,how you help your momor dad, or whom you talkwith about MS.
mother or father having MS.After all, it's a very grown-up topic to talk about.
However, I now realize thateveryone has something alittle bit different about hisor her family. When my promdate, Carrie, was going tomeet my mom for the firsttime, I said casually, "By theway, my mother has MS anduses a wheelchair." Shesmiled at me and replied,"Oh really? Well, my dad'sblind!" We both laughedbecause we each felt a littleawkward at first, but thenrealized it wasn't that big ofa deal. We each wanted theother to feel comfortable. Ifyou don't make a big deal ofit, your friends won't either.
Your friends will want youto feel comfortable when youtalk to them about yourparent's MS. I'm sure thatyou'd want your friend tofeel relaxed if he or she wasconfiding in you about some-thing personal. Some friends asked me questions aboutMS (most kids don't knowexactly what it is), but oth-ers didn't know how to askme about it. I learned thatboth responses were normal.
There's no right or wrongway to talk to your friendsabout your parent’s MS.Just do it when you feelready. Once you tell a goodfriend or two, you'll havesomeone else you can talkto. And that’s a nice thing.
My mom has had MS sinceI was ten. I always wishedthat my mom didn't need touse a wheelchair. I didn'twant my family to be anydifferent than those of myfriends. I just wanted ahealthy mother who could doall the things that myfriends' mothers could do –drive me places, chaperonefield trips, cook big dinners.(Of course, my mother willnever win any cookingawards no matter what, butthat's another story!)
I didn't always know how totell my friends about mymother's illness. I felt strange talking about itbecause it's not somethingthat just comes up whileyou're chatting about thelatest movie or school pro-ject. Sometimes I would tellmy friends and other times Ichose not to tell until theymet my mom for the firsttime.
Either way, it's normal if itfeels a little weird tellingyour friends about your
4
Knock, KnockWho’s there?
Olga.Olga who?
Knock, KnockWho’s there? Olive.
Olive who?
Knock, KnockWho’s there? Luke.
Luke who?
What’s the longest wordin the dictionary?
What gets wetterand wetter each time
it dries?
We asked, You Answered...
HOW WOULD YOUHELP OTHER KIDS DEALWITH THEIR FEELINGS
ABOUT MS?
I would play withthem and tell themfunny jokes.
Katherine (age 10)
I would help them with their problems.I would draw them
a picture.Shelby (age 8)
Make cards andhome-made gifts.
Nona (age 8)
Ask your mom or dad questionsabout MS and talk to peopleyou trust. Don’t get mad atwhoever has MS because
it is not their fault.
Colleen (age 8)
5
These are some of the fun thingswe do together as a family:
Contact your National MS Society chapter at 1-800-344-4867.
Use the space below to draw a picture of your family.
THIS IS MY FAMILY
1
PARENTS' PULL OUT
This issue of KeepS’myelin is about fami-lies. You can use thearticles and games totalk with your childrenabout the ways MS haschanged your family’sroutines or affected dif-ferent members of thefamily.
Use the cartoon aboutMichael and his friendsas an opportunity to talkabout how family mem-bers and friends pitch into help one another.Make sure your childrenknow how proud youare of the “extras” theydo for you and aroundthe house.
As you read Family Lifeand MS, encourage your
your children to sharetheir feelings about MSand the changes it hasmade in their lives.Don’t be afraid to sharesome of your feelings atthe same time. See ifyou can work togetherto think up some newprojects or activities toenjoy. These familyactivities will helpremind all of you thateven though MS maybring some changes intoyour lives, you can stillhave family fun.
Use Jeremy’s story totalk about how it feelsfor your children to talkabout the MS with theirfriends. You might evenwant to try a role playgame to give your kids achance to practice.
The “What is MS?” arti-cle is a good introduc-tion to talking aboutyour own symptoms,especially those thatyour children can’t easilysee for themselves—likefatigue, stiffness, orvision problems.
As you laugh togetherover the riddles andgames, see if you cancome up with other waysto share laughter.Encourage your kids tomake up their ownknock-knock jokesabout MS—or anythingelse—and send them tous for future issues.
ISSUE #5/FAMILY LIFE AND MS
HOW TO ENJOY KEEP S’MYELIN
WITH YOUR
2
PARENTS' PULL OUT
t is easy to makespending time togetheras a family a last prior-ity in this busy world.Work days and schooldays are spent withfamilies going in manydifferent directions.When everyone finallygets home, one parentmay be checking thee-mail while another isworking on laundry.The kids are off doinghomework or watchingTV. Does this soundfamiliar?
Sometimes families haveto schedule time togetherjust like all the otherthings that are scheduledin our lives. But the pay-offs are tremendous! Setthe day and time.Choose things thateveryone willenjoy—a driveto a specialplace for a pic-nic, a day ata museum, or atrip to the zoo.Or try justplaying cardsor a game around thekitchen table with a bigbowl of popcorn andsome hot chocolate!
I
During exacerbations or ifyour MS progresses, youmay need help from fami-ly, neighbors, or homehealth aides. The additionof these adults to thehousehold can be confus-ing for your children, par-ticularly if the newcomersbegin to help with parent-ing activities. If they intro-duce different rules orroutines, your childrenmay wonder who is incharge. To minimize con-flict, clarify with yourhelpers what their rolewith the children is to be.Whatever you decide, it is
important foryour childrento know thatyou willalways be theparent andthat the otheradults arethere to helpyou.
At times it may feel asthough you and your chil-dren have traded roles.
MS affectsthe whole family.
Even young children areaware of changes in daily
routines related to MS.
PARENTS' PULL OUT
How Can YouSubscribe toKeep S’myelin?
Call 1-800-FIGHT-MS.You will be connected toyour local chapter. Askthem to add your nameto the Keep S’myelin dis-tribution list. IT’S FREE!Keep S’myelin is pub-lished quarterly by theNational MS Society.Past issues are also available at your localchapter.
During an exacerbation,or if you experience long-term changes in yoursymptoms, you may startto depend on them to helpyou or manage thingsaround the house. Thiskind of role-reversalshould, however, be avoid-ed as much as possible.Even thoughyou may notbe as active asother parents,it is importantthat youremain in theparent role.The struc-ture andguidance you providehelps your children growinto their responsibilitiesgradually and gives them asense of security.
The best strategy is tokeep the household asnormal as possible, whilebeing realistic about thechanges that MS mayrequire. Children need tofeel comfortable in theirown home. The comfortlevel may drop significant-ly if you have a lot ofmedical equipment in thegeneral living area, or ifthe children have no pri-vate space to see theirfriends. If major adjust-
ments or home modifica-tions need to be made, itis a good idea to includeyour children in planningand implementing thesechanges.
MS is a part of your life –it doesn’t help to ignore itor, on the other hand, tomake it your main focus.A good way to achievethis realistic balance is tobe honest with your chil-
dren about whatyou need to do tomanage your illness,get their ideas abouthow to do this, andshow them that
being their parent is oneof the most importantthings that you do.
See directionson page 4
Here’s a fun activity to do as a family…
The BEETLE Game
3
4
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:National MS SocietyKEEP S’MYELIN900 South Broadway Second FloorDenver CO [email protected]
®
To create his/her beetle, the playermust roll each number from 1-5 inorder. After all, players can’t draw theeyes until the beetle has a head. Thefirst player to put the whole beetletogether is the winner!Roll a 1= draw the body (a large oval). Roll a 2= draw the head (a circle attached to the body). Roll a 3= draw three legs on one sideof the body.Roll another 3= draw another 3 legson the other side of the body.Roll a 4= draw one antenna.Roll another 4= draw the secondantenna.Roll a 5= draw one eye, another eyeand a
The BEETLE Game
This fun game is for ages 5 and up.All you need is a pencil and paper foreach player and one die.
Beetle is the original pencil-and-paperway to assemble your own bug. Tostart, each player rolls the die, and theone with the highest number goesfirst. He/she then rolls the die and triesto get a one. If a one is rolled, theplayer may draw the beetle’s body (alarge oval). If not, the player passesthe die to the next player. Each kidgets one roll per turn.
