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."
I then asked him if he had any questions.
He did ask one, "So did we get the Netflix movies in the mail yet?"
I was almost relieved. My son would continue to do what he did best and that was to be a kid. And I would continue to be his mom. Nothing would or will ever change that.
I also made attempts to explain my MS to my youngest son who has more of a limited capacity to understand about my disease. For him, I presented things more concretely. I told him that I sometimes see a brain doctor and that I sometimes have to get special pictures of my brain. I showed him my MRI's and he seemed content with these explanations. I also told him that "Mommy sometimes has trouble walking so you have to slow down so I can keep up." This revelation never stops him though. He still has only two speeds: Fast and faster!
When I first got diagnosed with MS I remember going on-line and looking some videos and films about MS. One of the films I remember viewing showed how different families dealt with this disease. In one particular segment they showed a dad and his two sons. The sons were both very involved with their dad's illness and there was much discussion about what dad couldn't do anymore. There were some very emotional scenes where it seemed both dad and his boys were on the verge of crying. I compared this scene with my family interactions and it just seems a different world. It was like comparing a Life Time movie with...The Roseanne Show. Every family is different, every parent is different, and every child is different. And for that reason alone I cannot give you a handy dandy list of what to say to your child about your MS.
What I can tell you is this. Kids basically want to know two things. They want to know that you love them and they want to know that you will be there for them. The other stuff can be worked out in the details. You know your child the best. Be honest. Be straight forward. Don't give them too much information that they don't need or want. Just stick to the basics and they will ask you for more if they want it.
Just in case though, here are a couple of links to help you out should you need it. The first is an excellent article called, Telling Your Kids You Have MS by Lorna J. Moorhead.
The other link is The National MS Society's publication made just for children about MS called Keep S'myelin
What has been your experience in telling your children about your MS? How did they react? Was it difficult for you to talk about? Please share your stories here. I am eager to hear from you.