Telling Your Kids You Have MS
by Lorna J. Moorhead
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 really getting agitated and stressed. She needed help, but was not getting the answers she wished form her doctors. "They all tell me that he is on a need to know basis, only tell him what he needs to know. 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 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 after finding my website for moms with MS (MS Moms), send me frantic emails asking for some sliver of help.
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.)
Therefore, after telling her to check up on my version of how I told my son on the web site, my next suggestion was as follows:
Ways 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 the 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.)
How do the nerves work?
For explaining how the nerves transmit those messages, I used the idea of the phone. He didn't get it. Next, 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.
Another way to explain how the messages do not get through, is to take a long wrapping paper tube and talk through it to your son, then if you begin to cut the tube or break it, The sound changes and the message is not as clear. If he is interested in walkie-talkies, try changing the frequencies and noticing on which channel the message gets through the best, then switching channels and showing how the sound breaks up. (You can do this with TV channels as well.)
Finally, when those messages don’t get through, it causes your body to do funny things and makes you sick. Though it is a bit farfetched, you can tell your child that the "be happy" message is not getting through today. The same with the "be awake" message.
How do the nerves get damaged?
A basic way to explain what happens to the nerves and the myelin and to explain what each are, is by getting out an Oreo cookie. The myelin is the cookie outside and the nerves are the mushy white inside. If you chip at the cookie cover, the white (nerve) becomes exposed. Take the top off and drop the cookie on the ground, dirt gets all over the white filling and that shows how the nerve is not protected. 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 hurt. These ideas explain how the myelin protects the nerves.
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 Ash, Misty and Broc against Team Rocket and Meowth from Pokemon). 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 misguided might prove too confusing for 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 that 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 not winning. Remind your child that like in most of their favorite movies, bad guys never win. (Unless they’re running for office.)
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?)
(Now for young children the bad guys don’t have to be killed or attacked, just put in time outs, for eternity.)
Remember the Basics:
1. There is a battle going on in your body. (On the other hand, some cells are just being brats are not doing what they have been told to do.)
2. Nerves tell your body what to do and are protected by coats. (When he goes out during winter with a jacket on, he is protected from the cold the same way the myelin protects the nerves from damage.)
3. When the coat is damaged or removed, the nerve is exposed and the messages don't get through correctly. (When he takes off his jacket in cold winter weather, he can get too cold, or even sick, just as the nerves get hurt or irreparably damaged.)
4. You are not going to die. Your son may need to hear this a bunch!
5. The medicine you take (or if you don't take any explain you have good cells that are battling the confused cells), controls the bad guys what to do. Alternatively, it gets rid of the bad guys who are trying to take off the nerve coats.
6. 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.
© 2000 Lorna Moorhead
Lorna Moorhead was diagnosed with multiple sclerosis in September of 1999. After finding little support for parents and women with MS, she formed her own organization in California called MS Moms. You can view her web site at www.msmoms.com. She is author of the book "Coffee in the Cereal: The First Year with Multiple Sclerosis".