Explaining 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.

Recently 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.

"They 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.

I 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 and understanding.

I 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!

Before 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.

Ways to explain MS to your younger children:

The Brain:
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.

How 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 brain.

When the message doesn't go through.

Next, 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.

We 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 the frequencies.

(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.)

Finally, 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.

What is Myelin?
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.)

What 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.)

If 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.

If 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.

Remember These Basics:
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.

1. Nerves 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 damage.)
2. When 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 irreparably damaged
   You are not going to die. Your child may need to hear this a bunch!
3. The 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
4. There 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 are resting.

When 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

Reprinted from ...And He Will Give You Rest
monthly support newsletter, Volume 5, Issue 5. ©

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