Parenting is never easy – it was not a piece of cake before the onset of multiple sclerosis (MS) and it never will be now. If you have MS and are raising children, consider some of the following strategies.
Calling a spade: let MS take the blame when it needs to
Sometimes MS gets in the way of things you or your children want to do. But by being open about your illness and your symptoms, you make it easier for your children to understand why plans need to be changed sometimes or activities postponed.
It’s okay for them to get mad at your MS (just as if you were mad at them). And in the end, they’ll feel much less guilty about expressing anger about the disease than you do about yourself.
To get the ball rolling, you can start by sharing your anger about the disease—by saying, for example, “I get so mad at MS when it stops me from doing something I want to do with you. I was really looking forward to riding our bike today, but I’ll give you a rain check.” on the bike ride and we can think of a fun alternative for the day.”
Create a creative backup plan
Like it or not, MS will get in the way sometimes. Day-to-day relapses or symptoms have a way of interfering with the best-laid plans. The key for anyone, especially for parents, is to have a backup strategy. In fact, we recommend making a Plan B for any major outing, excursion or activity.
Planning this way may seem 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 punches more easily when they know 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 would. Ask rehabilitation professionals for suggestions on how to adapt these activities to the requirements of your MS.
If fatigue or balance issues, for example, are making riding a bike more difficult, consider investing in a tandem bike or tricycle. Flexibility is key – if you are willing to think about doing things differently, you can do just about anything.
Contact your support network
Grandparents, uncles, aunts, neighbors, and friends can be great sources of support. Although you may want to do everything with your kids all the time, the truth is that you may need to pick and choose your activities.
So, instead of asking your kids to give up activities you can’t participate in, consider inviting some other people to take your place. Children can get a lot of support and enjoyment from the other adults in their lives.
For example, if you are fortunate enough to have your children’s grandparents in the area, this week’s football match could be a great opportunity for them to enjoy their grandchildren. They cheer you up for the game while you’re resting, and then introduce you to the gameplay (with video, if possible!) as soon as they get home.
Or, if you can’t be a driver this month, maybe a neighbor will drive the kids for a while – and you do something for her after she’s back on your feet again.
Also contact the MS provider’s office and/or the National MS Society by calling 800-FIGHT-MS or 800-344-4867 if you need help finding resources in your community to assist with your care.
Remember that MS isn’t always to blame – other teens are also in pain
Parents with MS tend to blame everything on MS—if Susie has been hanging around the house, Jimmy didn’t do well in school, Carol had nightmares, or Sam was locked in his room all the time. It must be MS. Although MS may certainly be the problem, it generally isn’t.
Babies hit all kinds of bumps in the road that may have nothing to do with you or MS. By jumping to the wrong conclusion, you may be missing out on other things going on with your kids that need your attention. Or, you might beat yourself up with a lot of guilt when it’s just plain teenage stuff.
It is important to be open minded (as well as open eyes and ears) so you can know what is making your child upset. for example:
Suzy may be depressed because she is mad at you for being different from other parents, or she may be upset that you won’t let her get that tattoo she’s been wanting for months.
Sam might be locked in his room because he’s sick of his MS, or he might be sad because he couldn’t get a date to party.
Other Recommended Parenting Resources for Multiple Sclerosis
For more helpful advice on parenting and communicating more effectively with your children, check out the following resources:
books
How to Talk So Kids Will Listen and So Kids Will Talk by Adele Faber and Elaine Mazlish (Collins Publishing).
Positive Discipline Jane Nelson (Ballantine Books).