TEN MINUTES WITH...NANCY LAW
A conversation with the VP of Program Services for the National Multiple Sclerosis Society
BY:SUSAN STRECKER RICHARD
Caring Today: Talk to us about the estimated 1.4 million child caregivers in the U.S. What do you think are the best-and worst-effects caregiving has on their lives?
Nancy Law: All kids are different. We're all different in the way we react to hardships and challenges. We see kids who just tumble and suffer tremendous negative effects. On the other hand, we see these amazing kids who rise to the occasion, who become so responsible...they say, "You know, I wouldn't have chosen this, but I've grown and learned from it. It's really part of who I am."
CT: Are you speaking mainly of kids in MS families?
NL: I am. This big 1.4 million number refers to all sorts of situations-a grandparent with Alzheimer's, a sibling with special needs. I was recently in a meeting about young caregivers. An attendee from the Department of Defense pointed up how young parents are coming home from Iraq and Afghanistan with significant injuries that families now must deal with. These situations come in many forms. At the National MS Society, we may have been aware longer than other groups simply because of the nature of our disease. It often strikes people as young adults, when they're starting their families.
CT: You have numerous family programs, many aimed at kids.
NL: We do. We have a quarterly kids' newsletter called "Keep S'myelin," with an insert for parents that fosters communication between parents and children. The newsletter helps kids, ages five to 12, understand mobility issues, the necessity of taking on extra chores around the house or helping Mom do things. It's available in hard copy and in an interactive version on our website, where we also have information for older kids.
Many chapters have weekend camp programs for kids, with parents on site but separate. Through our MS Journey Club, parents meet while their kids head off to get their "passports" stamped in The Land of Feelings and Change, The Land of Families, and elsewhere. The parents are learning how to talk about the same issues the kids are off learning about.
Our belief is that, ultimately, it's all about the parent-child relationship. If a nine-year-old has a question, she's not going to call the National MS Society—she's going to talk to her parents.
CT: You're working to open doors.
NL: Absolutely. Kids wonder: "Are you going to die?" "Am I going to get this?" We want to make sure the parents open the doors so their kids will get their questions answered.
CT: You also are working to make sure MS families have fun together.
NL: So many of our programs embrace the "family fun" concept-a chapter might sponsor a day at the zoo or an outing to a baseball game. In Florida, there's a very popular outing to Sea World. Sometimes, MS gets in the way of even the idea of a family outing because of worries such as, "Will I be too hot?" "Where will I find an accessible bathroom?" "Will there be enough wheelchair seating?"
When families know the MS Society's in charge, they know these things will be taken care of. And there's a side benefit to these outings. All of a sudden kids discover they're not the only ones in MS families. They sit next to each other and get talking. We concentrate on a little bit of MS—and a lot of fun!