illness to kids. Where do you start? Although
we know that not all of you have MS, we
hope that this article will offer some
creative tips to get you thinking about
your own illness and how to communicate
what you need for your children.
a mother asked me how I told my young
son about my multiple sclerosis. "How
do you explain that some days you are
always in bed or sick?" She was very
frustrated and upset. After being sick
for a week now, her five-year-old son
was getting worried and she didn't know
how to describe what was going on. She
needed help, but was not getting the answers
she wished from her doctors.
all tell me that he is on a need to know
basis, only tell him what he needs to
know. It seems so cold and I can't even
begin to think of how to explain the complex
workings of MS and the brain. I'm not
sure he even knows what a brain is!"
When this email came flashing across my
screen I sat back and smiled. I had felt
the same way just months ago.
am not a doctor or a psychologist. I do
not profess to know what will happen to
my son's psyche because of the way I explained
my disease to him. If someday I am called
to rescue my son from a local hospital
where they have him strapped up in a room
yelling, Kill all white cells!!"
then I will admit defeat and shut my mouth.
Until that happens, I will continue to
give advice to mothers who send me frantic
emails asking for some sliver of help
recall how much help I received from my
pediatrician when my son was a baby "Yep.
That's a boy all right!" and how
much help I received from my friends.
"Put down the Brazelton and step
away from the Dr. Spock! Good, now go
to the neighborhood park, sit back and
learn." (Swimming pools, parks, grocery
stores--these are the places to learn
child rearing.) Sometimes ideas that worked
for other parents are the best ideas.
That said, you might understand why I
tend to lean towards letting my friends
give me parenting ideas and not the oh-so
eloquent doctors. (Now of course I am
not condoning that you never listen to
or visit a doctor again, don't be silly.)
So let's get started on ways to tell your
children about your MS!
we start, I have to explain MS in many
different ways and on different occasions
to my son before it really sunk in. Do
not expect your child to instantly "get
it" and not forget it.
to explain MS to your younger children:
First, draw Mr. Stick Figure. Make a big
circle for the head. Draw a kidney bean
or a peanut inside the head. That's Mr.
Stick's brain. Circle the brain showing
that it is inside the head. Next, draw
lines from the brain to different parts
of the body, i.e., the hands, feet, legs.
Now try to explain that the brain in Mr.
Stick's head sends messages (orders) through
those lines in the body. (At this point,
my drawing looked like poor Mr. Stick
had a run in with a jellyfish.) These
messages tell Mr. Stick's body what to
do. They tell him when to blink, cough,
smile, and laugh.
do the nerves work?
For explaining how the nerves transmit
those messages, I used the idea of the
phone. My son didn't get it so we moved
on to his remote control car. I had him
hold the controller and told him it was
the brain. Then we attached some strings
from his remote to the car itself to act
as nerves. When my son moved the joystick
one way or another, we talked about those
messages (orders) went down the string
to the car to tell it what to do. The
strings were the nerves and the remote
the message doesn't go through.
we began to fray and cut some of the strings
attached to the car. (While my son was
in the bathroom, I took out one of the
batteries to better explain my idea.)
When he came back, he tried to get the
"brain" to tell the "body"
what to do. The car did not move. I explained
that this is what happens when those nerves
from the brain to the body get damaged.
went back to our drawing of Mr. Stick
and talked about what would happen if
the messages didn't get to Mr. Sticks
hands or feet. We talked about how it
would make Mr. Stick feel. (Please don't
expect your child to talk in depth about
this. One word answers are good enough
if you feel your child is understanding
the concept.) Another way to explain how
the messages can get changed or confused
is to take some walkie-talkies and change
(This works with cordless phones if you
have different lines or if you can convince
a friend to put up with a silly call.)
Notice on which channels the message gets
through the best and call those good nerve
messages. Then switch channels, let the
sound break up, and call those damaged
nerve messages. (You can do this with
TV channels as well. Some pictures come
in better than others. If you have cable
or satellite go to the channels that are
not paid for and call those channels the
damaged nerve channels.)
describe that when those messages don't
get through in your body, it can make
it difficult for you to walk, that "mommy
or daddy may seem a bit odd," and
you might get sick. Explain that during
those times you need to rest to get better,
just as your child needs rest when they
are sick. Though it is a bit farfetched,
you can tell your child that the "be
happy" messages are not getting through
that day. You can say the same thing about
the "be awake" messages.
A basic way to explain what happens to
the nerves plus explain myelin, is by
getting out any cookie with a creamy filling,
such as an Oreo. The myelin is the cookie
outside and the nerves are the mushy white
inside. Tell your child that the myelin
protects the nerve from getting hurt.
If you chip at the cookie cover, the creamy
filling (nerve) becomes exposed. Take
the top off drop the cookie on the ground,
and show your child how dirt gets all
over the white filling when the filling
(nerve) is not protected by the cover
(myelin). Talk about how a dirty nerve
might be bad at sending correct messages.
Another way to do this is with a hotdog
and hotdog bun. You can poke at the hotdog
bun with a fork, and the hotdog is still
okay, but if you remove the bun and the
hotdog gets holey. (Excuse the pun.)
is attacking the Myelin?
Think of a TV show or movie that he loves,
one that has definite bad guys and good
guys. Try to explain MS by pitting the
good guys (your medicine) against the
bad guys (the raging white cells.) The
bad guys want to destroy the nerve coatings
and the good guys must stop them. Since
explaining the white cells as simply "misguided"
might confuse a younger child, just be
blunt and make them bad guys. It's a simple
concept that children can grasp and process
quickly. In my case I never had to explain
cells to my son at all, I just told him
there was a battle going on in my body
and he accepted it. (I wish adults were
this easy to get along with.)
you do not take medicine for your
MS, just explain that there are good
guys and bad guys. Always assure your
child that the bad guys are never
going to win completely. Remind your
child that like in most of their favorite
movies, even if it seems the bad guys
are winning they never do in the end.
you do take some form of medicine for
your MS, explain that the medicine is
the good guys. When my son accidentally
burst in while I was giving myself my
nightly shot, I just calmly told him "This
is the way I shoot the good guys into
my body so they can go attack the bad
guys." Being a typical boy, now he
wants to watch every night as I take my
shot so he can cheer on the good guys!
(Mommy is having a hard time deciding
whether it is appropriate for him or not.
Then again what could be more frightening
then the Teletubbies?) For sensitive young
children, the bad guys don't have to be
"killed" or "attacked,"
just put in time outs, for eternity.
There is a battle going on in your body.
(On the other hand, some cells are just
being brats and not doing what they have
been told to do.
tell your body what to do and are protected
by coats. (When your child goes out
during winter with a jacket on, he/she
is protected from the cold the same
way the myelin protects the nerves from
the coat is damaged or removed, the
nerve is exposed and the messages don't
get through correctly. (When the child
takes off his/her jacket in cold winter
weather, they can get too cold, or even
sick, just as the nerves get hurt or
You are not going to die. Your child
may need to hear this a bunch!
medicine you take (or if you don't take
any explain you have good cells that
are battling the bad cells), controls
the bad guys. Alternatively, it eradicates
the bad guys who are trying to take
off the nerve coats
will be days when the bad guys seem
to be winning. On those days Mommy (or
Daddy) will not be feeling good. The
best thing for your child to do is help
you rest. Many children love to help
and will be glad to be involved instead
of banned from the room in which you
Lorna Moorehead was diagnosed with Multiple
Sclerosis at 23, she felt her world was
falling apart, however, with an amazing
amount of time on her hands, she decided
it was not time to lay down, but time
to get busy! Using her writing to not
only vent her own emotions and fears,
she has made a strong link to others with
her condition. When Lorna found that services
for women and parents with MS seemed lacking,
she formed her own non-profit organization,
MS MOMS. The MS MOMS web site is a place
for women and parents like herself, to
vent, cry, love and laugh when this sometimes
invisible disease leaves them feeling
that they have no-one else to share with.
Visit her website at: http://www.msmoms.com