Parenting is never easy — it wasn’t a piece of cake before multiple sclerosis (MS) came along and it won’t be now. If you have MS and you’re raising kids, keep in mind some of the following strategies.
Call a spade a spade: Let MS take the blame when it needs to
Sometimes MS is going to get in the way of things that you or your kids want to do. But, by being open about the disease and your symptoms, you make it easier for your kids to understand why plans sometimes need to be changed or activities need to be postponed.
It’s okay for them to be angry at the MS (just like it’s okay for you to be angry at it). And, in the end, they’ll feel a lot less guilty about expressing anger at the disease than at you.
To get the ball rolling, you can start by sharing your own anger at the disease — by saying, for example, “I get so mad at my MS when it keeps me from doing something I want to do with you. I was really looking forward to our bike ride today, but I’ll give you a rain check on the bike ride and we can think of a fun substitute for today.”
Come up with a creative backup plan
Whether you like it or not, MS is going to get in the way sometimes. Relapses or day-to-day symptoms have a way of interfering with the best-laid plans. The key for anyone, particularly for parents, is to have a backup strategy. In fact, we recommend having a Plan B for any major outing, trip, or activity.
Planning this way may sound like negative thinking, but it’s actually a way for families to hope for the best while planning for the worst. Kids (and adults) learn to roll with the punches more easily when they know that they can count on something really good in the near future.
Don’t let MS steal the show. If your MS symptoms are affecting your ability to enjoy some favorite family activities, don’t be shy about doing them in a different way than you normally do. Ask the rehab professionals for suggestions on how to adapt those activities to the demands of your MS.
If, for example, fatigue or balance problems are making bike riding more difficult, think about investing in a tandem bike or a three-wheeler. Flexibility is the key — if you’re willing to think about doing things differently, you can do almost anything.
Call on your support network
Grandparents, uncles, aunts, neighbors, and friends can be wonderful sources of support. Even though you may want to do everything with your kids all of the time, the reality is that you may need to pick and choose your activities.
So, instead of asking your kids to give up the activities that you can’t participate in, think about inviting some other folks to take your place. Children can get a lot of support and enjoyment from other adults in their life.
For example, if you’re fortunate enough to have your kids’ grandparents in the area, this week’s soccer game may be a great opportunity for them to enjoy their grandchild. They go cheer at the game while you rest up, and then give you the play-by-play (with video, if possible!) as soon as they get home.
Or, if you can’t be chauffeur this month, perhaps a neighbor could take over driving the kids for a while — and you do something for her after you’re back on your feet.
Also contact your MS provider office and/or the National MS Society by calling 800-FIGHT-MS or 800-344-4867 if you need assistance finding resources in your community to help with your care.
Remember, MS isn’t always to blame — other people’s teenagers are a pain too
Parents with MS have a tendency to blame everything on their MS — if Susie’s moping around the house, Jimmy’s not doing well in school, Carol’s having nightmares, or Sam’s locked in his room all the time, it must be the MS. Even though MS may certainly be the problem, it generally isn’t.
Kids hit all kinds of bumps in the road that may have absolutely nothing to do with you or MS. By jumping to the wrong conclusion, you may miss other things going on with your children that need your attention. Or, you may beat yourself up with a lot of guilt when it’s just standard teenage stuff.
It’s important to keep an open mind (as well as open eyes and ears) so you can figure out what’s making your child upset. For example:
Susie may be moping because she’s angry at you for being different from other dads, or she may be ticked off that you wouldn’t let her get that tattoo she’s been wanting for months.
Sam may be locked in his room because he’s fed up with your MS, or he may be sad because he hasn’t been able to get a date for the prom.
Other recommended MS parenting resources
For some more helpful tips on parenting and communicating more effectively with your kids, check out the following resources:
Books
How to Talk So Kids Will Listen & Listen So Kids Will Talk by Adele Faber and Elaine Mazlish (Collins Publishing).
Positive Discipline by Jane Nelson (Ballantine Books).
Websites
Dolls with Disabilities: This website sells cute rag dolls that come in a variety of skin tones and hair colors and that can be outfitted with a variety of assistive devices, such as a wheelchair, a cane, forearm crutches, a walker, a hearing aid, and more.
Family Food Zone: At this website, parents with MS who are looking to improve their diet can get recipes and tips for healthy family eating. Family Food Zone also provides a link to its fun, interactive kid’s site that teaches kids about nutrition.