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Parents Who Change the World

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Parents Who Change the World

Dimitri Vervitsiotis/Getty images

On an easy summer evening in June 2007, Scott and Katey Taylor decided to take three of their four young daughters for dinner and an evening swim at their suburban Minneapolis golf course. An active family, the Taylors loved the water and took every opportunity to spend time together outside.

As the daylight faded, Scott took one of their daughters, Christina, 2, home while Katey ushered Grace, 8, and some pals to the shower. That's when she looked back and saw 6-year-old Abbey in the wading pool sitting down with a strange look on her face. Katey called to her to join them.

She knew something was wrong the minute her daughter stood up. Obviously dizzy, Abbey took a few sideways steps and fell, knocking out her front tooth and hitting her head on the pool deck before plunging into the adult pool. Several hours and one emergency surgery later, doctors told the Taylors news that no parent could ever prepare for, much less imagine. Despite the fact that there had been not a speck of blood at the site of the accident, Abbey's small intestine had been ripped from her body by the suction from an uncovered pool drain in the kiddie pool.

In those panic-stricken days of her first hospital stay, Abbey asked Katey if she was going to be on television. Abbey was a showgirl--the kind of child who could belt out all the lyrics to High School Musical--so her parents figured she was dreaming about being famous. But Abbey wasn't focused on her beloved Hannah Montana. Lying in her hospital bed, the 6-year-old showed she was wise beyond her years. "I need to make sure that what happened to me doesn't happen to someone else," she said. Her words would change the course of the Taylors' lives.

Abbey died nine months later, after 16 surgeries including a triple organ transplant to replace her liver, small intestine, and pancreas. But her parents never forgot that conversation with their cherished little girl. With the support of Minnesota's U.S. Senator Amy Klobuchar, the Taylors helped revive and pass the Virginia Graeme Baker Pool & Spa Safety Act, a federal law named for a 7-year-old girl--Graeme, to her family--who drowned after being pinned underwater by hundreds of pounds of suction force from a hot-tub drain. The bill, passed in 2008, bans the manufacture, sale, or distribution of drain covers that don't meet anti-entrapment safety standards and requires the use of less powerful drainage systems. It had originally been championed by Nancy Baker, Graeme's mother, who had lobbied for three years to get the bill passed. When it stalled, Katey and Scott's support gave the legislation the final push it needed to be signed into law.

The Taylors also successfully lobbied for the state-level Abigail Taylor Pool Safety Act. It requires all existing pools and spas that are open to the public to bring their drain covers up to standards. Those pools are also now required to be licensed and inspected by the Minnesota Department of Health.

Getting those laws passed wasn't easy. The Taylors spent countless hours meeting with politicians, and learning the legislative process. They graciously told their heartbreaking story to the media and anyone else who would listen.

The Taylors aren't as unique as you might imagine. Across the United States, parents, many of whom are coping with unfathomable losses, become citizen lobbyists in the hope that other families won't have to suffer the same senseless tragedies. Whether they're fighting for food safety, improved car standards, bullying prevention, or autism-insurance reform, these mothers and fathers claw their way through the tangle of politics and bureaucracy, all in the name of their children.

For many parents, advocating for laws that protect children is a passionate act of remembering. "To have your child erased from earth is horrifying," says Long Island, New York, mother Adriann Raschdorf-Nelson, whose 16-month-old son, Alec, was killed when a beloved elderly relative backed over him because of zero rearview visibility in an SUV. Together with her husband, Bill Nelson, they successfully lobbied for Alec's Law, which mandates that all Long Island residents who buy or lease a car receive a brochure with information about the rear blind zone and preventing accidental backovers.

It took two years to pass the local legislation, but pushing through a law at the federal level often takes much longer. "The range is a couple of years to never—never being the most common," says Janette Fennell, the president and founder of KidsandCars.org, a nonprofit that advocates for improved car safety. Yet even knowing that there's little chance of a simple success, parents press on.

The Nelsons also met with then Senator Hillary Rodham Clinton and testified in Washington, D.C., in support of federal legislation now passed, that makes it impossible to put a car into gear without a foot on the brake and for all vehicles manufactured starting in 2014 to be equipped with a rearview camera. "Instead of blaming somebody, we looked for opportunities to make a difference with Alec's life," says Bill Nelson. "It's emotional and it brings us back to where we were when Alec died, but it helps us to help others."

Kim and Ken Hansen, of West Seneca, New York, understand intimately what motivates the Nelsons to keep pushing for improved safety laws. The couple lost their 16-year-old daughter and only child, Amanda, when she was poisoned by a carbon-monoxide leak at a sleepover. "A week after she passed away it hit me that there was something I had to do so that it wouldn't happen to another family," said Ken. "I knew that I needed to get carbon-monoxide detectors in homes." Today, Amanda's Law requires most houses and apartments in New York State to have working detectors.

If Amanda had lived, the Hansens would be spending their weekends looking at colleges. Instead, they devote their free time to educating people about carbon-monoxide poisoning and distributing CO detectors at places such as The Home Depot and fire stations. "The pain is always there, but every time we speak that's one more family Amanda is protecting," says Ken, his voice breaking. "That's what it's all about for us."

 

A parent's passion is a powerful tool for pushing through legislation. "When we meet with a mother or father and hear the story of how their child died because of a dangerous product, it fuels our commitment to implement laws that can save lives," says Scott Wolfson, director of the Office of Information and Public Affairs at the U.S. Consumer Product Safety Commission. Fennell is more blunt: "You can't just turn away from a grieving parent."

These kinds of tragedies irrevocably change not only a parent's daily routine but also how she sees herself in the world. "I always thought I was a strong person, but I didn't realize the depth of that inner strength," says Heather Vandenberghe, of New York City, whose 3-year-old daughter, Elle, was injured, almost fatally, when she was hit by a reckless driver who was reversing into a parking space while Elle and her nanny were walking to her preschool.

Three months after the accident, Vandenberghe's older daughter, Lila, asked if the man who hit Elle was in jail. Vandenberghe knew the driver had walked away with nothing more than a traffic citation. "I lied to her and said yes, because I just couldn't tell her the truth," says Vandenberghe. "I wanted Lila to believe that there is justice. At that moment I realized that I never wanted to have to lie to my daughter again. I wanted to do something." Two months later—lightning speed in the political arena—Elle's Law was passed by the New York Senate and Assembly, mandating a minimum six-month license suspension for drivers who injure pedestrians while driving recklessly. Shocked and dismayed that 37 states don't have pedestrian-safety laws, Vandenberghe is taking her campaign to the federal level. You can join the fight at elleslaw.org.

 

When Elle was injured, Vandenberghe was an executive at Louis Vuitton and knew nothing about the legislative process. In fact, according to Fennell, almost all mothers who become citizen lobbyists are catapulted into their work without any previous training. "I would have thought of myself as a mom who was aware of most aspects of safety," says Katey Taylor, who now pours her energy into abbeyshope.org, the nonprofit that she and Scott started to educate children and families about pool and water safety. "I look at what we've learned in the last two and a half years and how our knowledge has shifted to be not only about pool-drain products, but proper maintenance, education, and overall pool safety."

Identifying so closely with these deeply personal issues can get complicated. Some parents, according to Fennell, get dismissed as "overly emotional zealot moms." When people questioned whether the pool-safety laws the Taylors backed would be effective, the criticisms cut deep. "It's incredibly personal," says Katey Taylor, who admits that their advocacy may have strained some friendships. "I used to feel that when anyone questioned what we're doing, they were attacking Abbey's legacy. I've come to accept that sometimes a question is just that and nothing more."

"You're out there for people to poke holes at," Fennell says. Strangers will actually launch an online attack against the parents, saying the child's death was their fault. "I've never read such mean-spirited and ignorant comments as I have on some of these blogs," she adds.

While the potshots hurt, Raschdorf-Nelson is remarkably insightful about what motivates her detractors. "We're the walking epitome of every parent's nightmare," she says. "If they can blame us, then they can feel like it won't happen to them."

The fact that our culture is so uncomfortable with death and grieving has led to other insensitive, if well-intentioned, advice about how the Nelsons should get on with their lives. It's a suggestion that hurts Raschdorf-Nelson, who is more than engaged juggling her career as a flight attendant with raising the couple's five other children. "Just because we're still talking about our child doesn't mean we aren't moving on," she says. "We are moving on and taking him with us."

 

You don't need to have experienced a personal tragedy to be an effective advocate. Whether you want to fight for food-safety laws, push to increase school funding, or simply have a stop sign installed on your corner, the lessons learned by these families can help you. We asked highly involved parents for their best advice on how to make lasting changes that matter.

- Join forces. Align yourself with a person or an organization that's already involved in what you're doing and knows the history of the issue from a lobbying standpoint. Vandenberghe used her network of friends and family to connect with New York lobbyist Allison Lee, who in turn introduced her to political movers and shakers in the state capital. You can research the Consumer Product Safety Commission website (cspc.gov) to check if there are already laws on the books related to what you want to promote. The Government Printing Office website allows you to search for all existing federal laws enacted since 1995.

- Get confident. "Women have so much self-doubt that they don't have the expertise," says Minneapolis mom Courtney Cushing Kiernat. "I think it's more about stepping up and realizing that what you don't have you'll either learn or find in other people." When Cushing Kiernat spearheaded a tax referendum campaign—a yes-or-no ballot vote—to benefit the Minneapolis Public Schools, the country was deep in the grip of the 2008 recession and she only 18 percent of the voting population had children. "I knew what was happening at my own kids' elementary school, but I needed to hear what was going on in all the other schools in the district," she says. "I showed up at most school meetings and every community meeting I could—an average of three a week for months—and listened." The referendum passed with an overwhelming majority.

- Start sharing. "You have to be comfortable telling your story a hundred times," says Tanya Chin Ross, director of public policy at Safe Kids USA (safekids.org), a Washington, D.C.-based national network of organizations working to prevent unintentional childhood injury. Write your story from your heart and practice in front of people.

- Use social media. Asking your Facebook friends to repost or to retweet on Twitter can make an impact. E-mail bloggers and reporters at your local newspaper. If everyone you know spreads your message, you can see exponential reach.

- Attend public hearings. Don't be afraid to share. Other parents probably feel the same way you do.

- Be patient. Passing a law can take years ."It's difficult to get legislation passed, especially when it comes to child safety," says Chin Ross. "There are competing agendas and lots of other issues, including taxes and budget sessions."

- Stay resilient. "You'll hear 'no' a lot more than 'yes,'" advises Fennell. "But if you are doing something that comes from your own life experience, you have the truth on your side."

- Don't stop with laws. Legislation is nothing without education. Each year since Alec's death, the Nelson family has sponsored Alec's Run (alecsrunli.com) to raise awareness about car safety. Proceeds go to KidsandCars.org and other nonprofits.

Originally published in the May 2011 issue of Parents magazine.

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