For parents who have children with neurologic conditions, the constant focus on advocacy can be exhausting. Parents need to be mindful of how much they can take on, says Amy Brin, MSN, executive director of the Child Neurology Foundation in Lexington, KY. “Families do incredible things on this very tender and traumatic journey—they change a law, or they find a gene—but others continue to ask more of them, which leads to burnout,” she says.
She and parents who've been there share this advice for maintaining your perspective.
Find other families. Reach out to a support group to meet and interact with families in a similar situation, even those whose children don't have the same disease as yours. “Before you can effectively advocate for your child, you need to work through all your emotions, which may range from grief to anger to uncertainty,” says Brin. And if you're up to it, offer peer support through such groups or volunteer with an advocacy organization that may need help with outreach or fundraising events.
Spend time with your kids. Amid all your advocacy activities and medical appointments, be sure to interact with your children. “I've had moments when I've realized that I've spent hours at my keyboard trying to advocate for Tony's future, when he and his younger brother are just two rooms away from me in my house,” says Mike Graglia, whose 8-year-old son, Tony, has SYNGAP1 syndrome. “At those moments when I feel totally exhausted, I shut off my computer and go into their rooms and goof around with them.”
Make personal time a priority. Parent advocates may neglect leisure time with their significant others. “Without making time for each other, I don't know if we would have made it this far,” says Matt Wilsey, whose daughter has a rare genetic disorder. Wilsey and his wife, Kristen, have a weekly date; they hire a babysitter and do something fun together, even if it's just grabbing a glass of wine and going for an evening stroll.
Embrace spontaneity. Right after his son's diagnosis of Duchenne muscular dystrophy, John Killian packed up his family—including four kids—for a spur-of-the-moment road trip. “My wife and I were at our wits' end, and neither of us knew what to do,” says the commercial real estate broker in Dallas. “We'd been meaning to go on a weekend trip to Houston, four hours away, so we just looked at each other and said, ‘OK, let's do it.’ We all had a great time.”
Take a break. Five years after Ellen Seidman's son, Max, was born with cerebral palsy, she started a blog to chronicle her experience. She kept it going for 15 years, but over the past few months she's started tapering off. “It no longer felt appropriate to write about Max without his permission,” she says. She plans to restart her blog in a year or two, but next time she and Max will write posts together.
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