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Parenting: It Wasn’t Easy Before You Had MS!

As a parent or prospective parent with multiple sclerosis (MS), you’re probably worried about what effect your illness or disability will have on your children. You may wonder if you’ll be able to give them what they need or whether they will have to take care of you. Here are some things learned from research and clinical experience and from others who have studied this issue:

  • Kids who have a parent with MS generally do well emotionally, socially, and academically.

  • Many children develop a strong sense of responsibility and take pride in learning how to do things independently.

  • Children learn a lot from watching a parent meet life’s challenges — and it makes them proud.

  • When children grow up with someone who has a disability, they tend to develop a greater sensitivity to the needs of others.

  • Sharing challenges can bring family members closer to one another.

In other words, don’t assume that having a parent with MS has to be a downer for your children. On the other hand, it’s important to acknowledge your children’s feelings and worries about MS because sweeping them under the carpet doesn’t really work in the long run. Your job as a parent is to find the balance.

MS and parenting: keep the communication lines open

You may be wondering whether it’s a good idea to tell your kids about mom or dad’s MS. You may worry that the information will scare them or give them too much to worry about. You may be afraid that they will see you differently or feel embarrassed. Or, you may simply not know how to begin.

Telling the kids about your MS makes good sense

As you may have already figured out, MS doesn’t just affect one person in the family — it impacts everyone — so each family member needs to develop some kind of relationship with the illness. And open discussion is the best foundation we can think of for building comfortable relationships.

You know your children better than anyone else does. So, ultimately, you’re the one who needs to decide what’s best for them and for the family. It’s our experience, though, that there are some good reasons for introducing MS to kids early on. The following sections explain a few.

Children of all ages are pretty quick to pick up on what’s happening around them. If you’re tense, worried, or upset, chances are that your kids — no matter how young they are — are clued into it right away.

Even if they don’t quite know why you’re upset, they sense your mood and interpret it as best they can. This means that without information from you, their imaginations will take over, and the problems they imagine are likely to be even more frightening than whatever the reality happens to be.

Big news items should come from you

Your kids need to hear about the important stuff directly from you for the following reasons:

  • Someone else may not have the most accurate information or the best way of presenting it to your kids.

  • Children don’t like being the last to know about something important.

  • When parents find it too difficult to talk about something, kids quickly conclude that it must be something really terrible or shameful.

  • Hearing the information from you helps them feel secure and confident that you’re on top of things.

The longer you put off talking about your MS, the more likely it becomes that your children will end up hearing about it from someone else — most likely a well-meaning friend or relative who accidentally spills the beans.

When a big, gray elephant is hanging out in the living room and no one’s talking about it, it’s easy for children to conclude that the subject is off-limits. But when you talk about what’s going on, your kids get the message that it’s okay to tell you what’s on their minds. And you’ve given them the vocabulary they need to put their questions into words.

Accurate information about the disease relieves kids’ guilt

Children have a tendency to see themselves as the center of the universe. Younger kids, in particular, are likely to assume that anything going on around them is somehow related to them. So, when you aren’t feeling well or you’re upset or tense, they’re likely to assume that they’re the cause of the problem. Giving them accurate information about MS will reassure them that they didn’t make you sick.

Women are at increased risk for an MS relapse three to six months following childbirth. Hence, many women experience their first MS symptoms right after the birth of a child. When the words “I got MS right after Johnny was born” become part of the family folklore, Johnny can easily assume that he’s to blame. A good discussion about the possible causes of MS can help lay Johnny’s guilt feelings to rest.

In the same way, statements like “You’re really stressing me out; cut it out or you’re going to make my MS worse” lay a heavy load on kids. So, try not to use your MS as a behavior-controlling tool.

Your openness about MS provides a good model of family sharing and problem-solving

As a parent with MS, you have the opportunity to model for your kids how people help one another deal with life’s challenges. Children who see that it’s okay for family members to talk with each other about problems that arise are much more likely to come to you when they hit snags along the way. Sharing info with your children is important.

Sometimes your kids’ needs conflict with your own. For example, you may want to talk to the children about your MS, but you haven’t told anyone at work yet because of concerns about job security. You’re worried that after the kids know, the information will spread around and eventually get to your boss’s ears. What do you do?

This situation has no easy answers — you need to decide what to do on the basis of what you know about your kids and about your work environment. But remember that by the age of 6 or 7, most youngsters understand privacy and secrets pretty well. They can appreciate the idea that some things only get talked about at home. Any child who has had bed-wetting issues, for example, knows exactly how important it is to keep some stuff private.

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