ISSUE #7/ABOUT YOU A NEWSLETTER FOR KIDS ABOUT MULTIPLE SCLEROSIS 1 Most of the articles, drawings, and stories in this issue of Keep S’myelin were written by you. Thanks for sending us your wonderful work. If you would like to write a story or poem for Keep S’myelin, please send it to: We welcome your contri- butions! You might see yourself in print some day! Writing about MS in your family, or drawing pic- tures that tell a story about MS in your family, are great ways to share your ideas and feelings. You don’t have to be a famous artist or poet or author to draw, write poems, and tell stories. Share your work with your parents or other grown- ups, such as your teacher, a friend, an aunt or uncle… They want to learn about how you feel about MS. Sharing your work gives you a chance to talk over things that might be confusing about MS, or that might be funny or sad or frustrating about MS. Sharing may make you feel better, too! Jennifer Ricklefs, Keep S’myelin, NMSS 700 Broadway, Suite 810 Denver, CO 80203.
Transcript
ISSUE #7/ABOUT YOU
A NEWSLETTER FOR KIDS ABOUT MULTIPLE SCLEROSIS
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Most of the articles,drawings, and stories inthis issue of KeepS’myelin were written byyou. Thanks for sendingus your wonderful work.If you would like to writea story or poem forKeep S’myelin, pleasesend it to:
We welcome your contri-butions! You might seeyourself in print some day!Writing about MS in yourfamily, or drawing pic-tures that tell a story aboutMS in your family, aregreat ways to share your
ideas and feelings. Youdon’t have to be a famousa rtist or poet or author todraw, write poems, andtell stories. Share your work with yourparents or other grown-ups, such as your teacher,a friend, an aunt oruncle… They want tolearn about how you feelabout MS. Sharing yourwork gives you a chance
to talk over things thatmight be confusing aboutMS, or that might be funnyor sad or frustrating aboutMS. Sharing may makeyou feel better, too!
Jennifer Ricklefs,Keep S’myelin, NMSS700 Broadway, Suite 810Denver, CO 80203.
Multiple sclerosis (MSfor short) is a diseasethat affects the centralnervous system (thebrain and the spinalcord). The brain is like acomputer that tells thebody what to do. Thespinal cord is like a thickwire attached to thecomputer. Messages trav-el from the brain, alongthe spinal cord, to theother parts of the body.
When a person has MS,the covering (myelin)
M.S. that protects the nervesgets damaged. Scars formwhere the myelin is dam-aged. As messages travelfrom the brain, they some-times get stuck or sloweddown by these scars.When this happens, theother parts of the bodycan’t always do what thebrain is telling them to do.
Sometimes people withMS have trouble seeing.Sometimes their arms andlegs feel weak, or theirskin feels “tingly”(likep i n s a n d needles). Some-times they lose their bal-ance, or sometimes it’s
hard to walk. MS prob-lems like these are called“symptoms.” Symptomsof MS can come andgo…we don’t know exact-ly why. Sometimes youdon’t even notice thesymptoms. At other timesthey are pretty obvious.It’s hard for a person withMS to know from one dayto the next how he or shewill feel. That is why wesay that MS is unpre-dictable.
Interesting Fact: Multiple means many.Sclerosis means scars. So,multiple sclerosis means“many scars.”
CAROLINEAge 10
New Jersey
E Y E S C H I L D
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ach member of myfamily plays a differentrole in helping to make ourfamily life better. I havetaken into my own handsthe responsibility of enter-taining my father! I playsoccer and my fatherloves the sport as muchas I do! I would never quitbecause I see the joy inmy father’s eyes when hesees me play sports. Mymother takes the role ofbeing my father’s legs.Whenever my father needssomething, she does thewalking. My sister, Laura,plays the role of thinker.
y father always hada lot of ideas and thoughtabout ways to get jobsdone with a high intelli-gence level. When mysister comes home fromcollege, she does someof the thinking jobs thatare harder for him now.My brother, Patrick playsthe laborer. He has thephysical strength to do allthe jobs that contain thehard work.
Finally, my father’s roleon our team is the teaml e a d e r. He is the strongestmember of the team. Herarely lets his MS get himdown. He’s always therewhen you need him. He’staught us how to have apositive attitude andappreciate the good life.
Having MS in our familyhas taught us things thatnothing else could everteach us. I am lucky to bea part of such a meaning-ful team—my Dad’s team.
Has Already Helped Me Succeed
en years ago, my father was diagnosed
with multiple sclerosis.Back then when I wasonly four or five, it wasn’ttoo bad. But now, as thedays and years go by, myfather’s legs are hardlyable to balance him any-more, his eyesight is notgreat, his writing is slop-py, and at times he evengets tired of thinking!
Teamwork is somethingthat all children and teensneed to experience. I havehad chances to try team-work in school and insports and it has given mea boost in life. But the oneteam that means the most to me is my family. In myeyes, we work together better than any other family.
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CASEY is a 6thgrader in MiddleSchool in NorthCarolina. She likesto read and draw,and she has lotsof pets : a horse, abird, 5 dogs, and agoat! Her mom hashad MS for 2years. Casey w r o t eand illutrated this story for Keep S ’ m y e l i n .
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MS gives momma double vision.She has to wear sunglasses whenshe drives, which is rare.
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I would tell other kids:“Don’t be afraid of MS(your parent’s or any-body’s). They are stillregular humans!” CR, Pennsylvania
I would say: “Let outyour feelings! Andexercise!”TR, New Jersey
I would tell them that I deal with thesame feelings. TS, Wisconsin
I would tell them to writeto Keep S’myelin andask questions so theycan feel more comfort-able!KH, Ohio
I would just say thatyou have to love yourparents whether theyhave MS or not! BM, Wisconsin
I would say they shouldnot worry. It will be OK.…Well, they can worry a littlebit, but not too much! SA, Ghana, West Africa
Here are Some Tips for You!
I would say: “Just behappy and make sureyou always love theperson with MS!” MS, Oregon
I would help my friend by saying, “It will be OK, my friend."AH, California
I would tell them to try to forget it’s there most of thetime. But don’t put it totallyout of your mind at all times,because your mom or dadstill needs your help! SM, Pennsylvania
I would tell them to justpray to God and Hewill help them in theirtroubles.SS, Bermuda
We asked ourreaders: “How would
you help other kidsdeal with their feelings
about MS?”
You sent uslots of very goodideas. Here are
some of yourreplies.
Our readersare really
smart!
I would talk to myfriends about it and ask them how theyfeel.DD, South Carolina
Here is a list of words thathave two meanings. Youcan use these or otherwords to make up yourown jokes or try someother words. Go ahead!Tickle your funny bone.
Find a word or phrase with two meanings. Example: Digs rock
Write down the two meanings in sen-tences. Example: A bulldozer digsrock. A musician digs rock..To make your joke, ask why the two
things are like each other. Example: Whyis a bulldozer like a musician?They both dig rock.
Keep S’myelin wants to hear from you. Send us your favorite jokes so we can include them in our newsletter. Or create your own new jokes and share them with us.
Q: What do cows getwhen they are sick?A: Hay Fever
Q: Why does a milkingstool have only three legs?A: Because the cow has theudder
Q: What do you call acow that just recentlyhad its baby?A: De-calf-inated
POEM
My mom is sweet.My mom is neat.My mom has MS.Her younger kid is Tess.I really think I have a momWho can't be beat!
Shane (Connecticut)8 years old
DUCKBILL
PEN
RIGHT/WRITE
RING SAW
COW JOKES
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Some jokes start by using a word orphrase that has two different mean-ings. Here are some tips for writingyour own “play on words” jokes.
TRY THIS
HERE IS ONE WAYTO WRITE YOUR OWN “PLAY ON WORDS”
COW JOKESQ: What is a cow'sfavorite lunch meat? A: Bull-ogna
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ISSUE #7/ABOUT YOU
PARENTS' PULL OUTThis issue of KeepS’myelin is filled with art-work and stories by c h i l-d ren who have a parentwith MS. Their creativevariety reflects the vari-ability of the diseaseitself, providing you withthe opportunity to remindyour child(ren) that everyperson’s MS is different.Some people with MShave symptoms that noone can see from theoutside, while other peo-ple may need to use onekind of assistive deviceor another to do t h ethings that are imp o rt a n tto them. Regardless oftheir parent’s disa b i l i t y,h o w e v e r, the messagefrom these young artistsis clear: Mom or Dad isthere to love and takecare of them.
As you read and talkabout this issue, you andyour child(ren) mightwant to draw picturesof your own family and
the special things youlike to do together. Thisis a good opportunity totalk about your ownsymptoms and the waysyou—and they—haveadapted to the changesMS has brought intoyour lives. Decorating acane or other assistivedevice can set the stagefor talking about theirconcerns about MS andthe symptoms it cancause, while emphasiz-ing the value of tools inour everyday life.Natalie’s story about herfamily’s teamwork may
suggest ways for eachmember of your familyto be an active player onyour MS team.
You may find yourselfstartled—or even hurt attimes—by your child(ren)’sreactions to your MS.They may laugh at asymptom that looksfunny to them, get angryabout your inability todo something for or withthem, or simply act asthough there’s no prob-lem at all. In other words,their feelingsmay seemto be totally out of synchwith your own. The sto-ries and drawings in thisissue offer the opportu-nity to talk with yourkids about how each ofthe people in a drawingmight be feeling. This isa great way to share feel-ings and worries aboutMS, see things from dif-ferent perspectives, andremind yourself and yourchildren that everyone’sfeelings are unique.
HOW TO READ
KEEP S’MYELINWITH YOUR KIDS
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3. TO READ IT,hold the papernear a light bulbor place it out inthe sun. Yourmessage willappear as brownwriting.
WHAT YOU NEED:• Juice of one fresh lemon• A thin paintbrush• White paper
Write a secret message to afriend or family member! It’svery easy. Here’s how tomake your own invisible ink.
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How Can You Subscribeto Keep S'myelin?CALL 1-800-FIGHT-MS.You will be connected to your localchapter. Ask them to add your nameto the Keep S'myelin distribution list.IT'S FREE! Keep S'myelin is publishedquarterly by the National MS Society.Past issues are also available at yourlocal chapter.
1. Squeeze the juicefrom one fresh lemon.(You may need the helpof an adult.)
DIRECTIONS
2. Dip your paint-brush in the lemonjuice and write yourmessage. KEEP S'MYELIN is now
available on line at
www.nationalmssociety.org
If your child is submitting something to Keep S'myelin,be sure to include thePARENT'S NAME, ADDRESS,AND PHONE NUMBER.
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RESOURCESFOR PARENTS.
EVERYDAY ART FOR KIDSProjects to Unlock Creativityby Carolyn Holm
KIDS CREATE!:Art & Craft Experiencesfor 3- to 9-Year-Oldsby Laurie Carlson
ART IS A WAY OFKNOWINGby Pat B. Allen (Good ideas for projects usingart to help express emotions.)
BOOKS GET CRAFTING with this link to allkinds of activities you can exploreand share with your child.http://www.kidsartscrafts.about.com
WEBSITE
As of the printing of this newsletter, allphone numbers and web addresses wereaccurate. These are subject to change, how-ever. If you discover an inaccuracy, weencourage you to check with DirectoryAssistance or an internet search engine.
NOTE:If you notice disturb-
ing themes in your child’sart work over time (e.g., intense
sadness, anger, violence...),consider talking with a counseloror teacher about ways to help
your child further explorehis or her feelings.
Keep S'myelin is a quarterly publication for childrenwith parents or other relatives with multiple sclerosis. Itis produced by the National Multiple Sclerosis Societyand funded by a grant from our Gateway AreaChapter. The National Multiple Sclerosis Society isproud to be a source of information about multiplesclerosis. Our comments are based on professionaladvice, published experience and expert opinion, butdo not represent therapeutic recommendations or pre-scriptions. For specific information and advice, consulta qualified physician.
The National Multiple Sclerosis Society does notendorse products, services, or manufacturers. Suchnames appear here solely because they are consideredvaluable information. The Society assumes no liabilitywhatsoever for the contents or use of any product orservice mentioned.
