I was going to title this article something like "What to Tell Your Kids About MS" but I figured that I really don't know myself, so how could I tell someone else what to say. To tell you the truth I am never much good about such explanations. You would think I would be good at them by now as I have had a lot of life experience with having to try to explain neurological disorders. I worked in the field of helping those with multiple disabilities and now I have a child with a neurological disorder, autism. I remember the day one of the neighbors came to the door with her daughter who was my son's age. The conversation went something like this:
Neighbor Mom: "My daughter was wondering about your son. I told her that he has autism but she doesn't know what that means."
Neighbor Mom's Daughter: "Is he handicapped?"
Me: (feeling very put on the spot and stymied) "Ummm....no he isn't handicapped. He just has autism.
Neighbor Mom: "Yeah that is what I told her. She doesn't know what autism means."
At that point I wanted to rush back inside the house to retrieve one of the many autism awareness t-shirts we have explaining exactly what it is.
Instead I stammered, "Well sometimes he has trouble with talking and processing language."
The neighbor's daughter still looked puzzled. I thought about all the experts and book writers who had a difficult time to come up with one comprehensive definition of my son's disorder. And here I was trying to sum things up in a sentence or two for another child.
Some years later I find myself attempting the same thing but with my own neurological disorder and the children I am explaining this to are my own.
Things like autism or Multiple Sclerosis are not easy to define. There are no clear cut causes. There is nothing visible to tell you that someone has either neurological disorder. What you are left with are the symptoms. You end up talking about all the things you might have difficulty doing. And this is exactly what I did when I tried to tell my eldest son about my MS. He was twelve at the time.
Me: "I want to tell you about my last doctor's visit. I was told that I have something called Multiple Sclerosis. Have you ever heard of this?"
My eldest son: "I'm not sure, maybe."
Me: "Well basically it means that sometimes I am going to have trouble with walking and sometimes even talking. Sometimes I will feel really tired."
At this point I also gave the analogy that I am like a lamp with short in the electrical cord. I talked about my myelin and brain plaque and that is where his eyes began to glaze over. So then I went back to discussing what I thought he probably most wanted to know.
Me: "I am not going to die from this. As a matter of fact, most days you won't even realize I have it. I just may need a little extra help from time to time. But I am going to be here for you no matter what."