What to do?
First of all, consider this: children are incredibly intuitive and sensitive to changes in their environment. They probably will have figured out that there’s something going on with you, even before you tell them.
The good news is, they’re also incredibly resilient and can cope with almost any event, especially when they’re informed and included in the process. If your children are old enough to talk, they’re old enough to talk about your MS. Even kids as young as four or five years old can be told in a way that won’t be scary or threatening. It’s usually best to be open and honest with them.
Try to be positive, calm, and confident when you tell them. A good attitude could make all the difference in how well your children respond. They’ll want to know that you will be doing everything you can to take care of yourself and of them.
They might actually be relieved when you talk about this together; children’s fantasies are often worse than the reality. Interviews with children whose parents have MS have shown that kids in this situation actually cope with it more comfortably than their parents do.
Your children may have some questions about your MS. Answer them honestly, in an age-appropriate way. They may also harbor secret fears that they won’t necessarily bring up with you, such as whether they’re responsible for your having MS. You might want to be proactive and emphasize that this has nothing to do with them or anything that they—or anyone else—has or hasn’t done. You can give your child a choice about how he or she would like to learn more about MS. It may be by reading a book with you (Check out Mommy’s Story: An introduction for younger children to learn about a parent’s MS), by watching a video, or by joining you at your next doctor’s appointment.
When it comes to communicating with older kids, like teenagers, you’re often dealing with a tougher crowd. Whereas younger children are more apt to ask questions, teens can often shrug away what they don’t understand, wanting to avoid embarrassment or confrontation. Even if he or she doesn’t show it, your teenager needs to be reassured that everything’s going to be OK, just as much as a younger child would.
No matter what ages your children are, if you have exacerbations, reinforce to them that even though you’re not feeling well, you’re going to be just fine. If you need to be hospitalized, don’t hide it from them. Keep them in the loop with phone calls or notes; this should go a long way to allay their fears about the unknown.
We all want our kids to be happy, healthy individuals. Yet it’s natural to feel, at times, that maybe you’d be a better parent if you didn’t have MS. Don’t let this one facet of your life undermine your confidence as a parent. In his memoir, Blindsided, Richard M. Cohen writes about his struggles and triumphs as a parent with MS. He recalls being on a subway platform during an outing with his young son, that due to a momentary loss of equilibrium, nearly caused an accident. He’s wise enough to recognize, though, that “it was only a routine moment gone bad.” And that had he not been there with his son, it “would have been to throw in the towel on my life and to rob a boy of an adventure with his father.” If certain activities feel too demanding for you, don’t take it out on yourself. If you can’t throw a football around with your child or make it to every soccer game, what’s much more important is that you’re a loving, supportive parent. In fact, the best way to raise great kids is by staying emotionally healthy.
One universal challenge that many parents share is how to discipline their kids. For someone with physical limitations, this can be even more of a challenge. They sometimes find it hard to set limits on their children, often feeling like they cut their children too much slack. If that’s the case for you, don’t let guilt guide you. Try asking yourself, “What would I do in this situation if I didn’t have MS?” Rather than focusing on the physical aspects of discipline, Rosalind C. Kalb, Ph.D., author of Multiple Sclerosis: A Guide for Families, recommends that parents hone in on more important skills, such as communicating clear and consistent expectations and consequences.
Even if you master these skills, though, don’t expect your kids to always step in line. Children are continually testing the waters to make sure their parents are still in charge and able to take care of them. You might also want to seek out other parents, with or without MS, who’ve been there, done that.
No question about it, this is not easy stuff. But there is a silver lining: If you bravely help your children face adversity, they are likely to turn into stronger, more responsible, more compassionate individuals. A big silver lining, indeed.
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