How to Tell Your Child About MS

Children are more observant than many folks believe. They notice our behavior and often copy it. If one of their parents acts differently than other people, they are likely to ask questions. If a parent shows signs of MS, a child may be curious as to why that parent walks with difficulty or uses a cane, or seems to get tired all the time.

My wife and I had many discussions to decide the best time and the most effective way to explain her MS to our young son.

No hard and fast rules

There are a gazillion books on child-rearing. Some of them contain rules that seem to be set in stone. When it comes to telling your child about your debilitating disease, however, there are no set rules.

That makes sense. The timing and the amount of information you want to tell your child is a very personal choice. When we considered this issue, none of the popular child-rearing books covered it. And there was no internet brimming with advice.

We used our instincts

I don’t remember how old our son was when we told him that his mom had MS. But we waited until he started to ask questions in general, taking it as a sign that he was becoming more curious about the world. So, we told him in a matter-of-fact tone that his mother would sometimes walk a bit differently and sometimes needed a cane.

We told him why, but without going into detail. That would come later. We answered any questions he had in short, easy-to-understand sentences. He took it in stride and has ever since.

Suggestions, not rules

I would never presume to dictate how to explain one’s disability to a child. But medical professionals and others have made some helpful suggestions on how to talk to disabled children about their own disability – and many of the suggestions apply here as well.

The tone of your voice is important. A child will read your emotions and take her cue from them. It is important to speak in a normal conversational voice, rather than in a very serious manner. It is also important to focus on your abilities. A child is less likely to see a parent (or others similarly situated) as less abled if you emphasize the many things that a parent with MS can do.

Keep your eye on the goal

“The whole idea is to normalize all different kinds of abilities and disabilities,” said Inara Segal, Ph.D., a New Jersey adolescent psychologist. “The disability does not define the parent; it is just one more individual aspect of that parent.”

“Parents come in all shapes and sizes and skill levels, so there are always happy and productive activities the parent and child can share.” In your initial discussion or at some point in the future, your child may ask why a parent or other less abled person walks differently. It is important to give a simple, short answer such as, “My muscles get tired a lot.”

Tough questions can be challenging

Kids can sometimes ask surprising questions that seem to be beyond their years. One such question is whether their parent will get better or worse. That’s a tricky one because with MS there is no certain answer, but we don’t want to scare our children.

An honest approach is to emphasize the help you receive from your neurologist, your support partner(s), and from your MS medication if you are taking one. Try to paint a hopeful picture without conveying false optimism.

“As the child grows,” says Dr. Segal, “the explanation for the disability can be expanded, but only as far as is necessary at any given age level. The focus should always be on the loving relationship and what the parent can do, for that is the essence of the parent/child bond.”