Senior Research Specialist, Elizabeth Roof from the Vanderbilt Kennedy Center is well known and revered by many in the PWS community. While specializing in psychiatric and behavioral development in people with developmental delays, she has a special place in her heart for people with Prader-Willi Syndrome
Beginning her career as a teacher, she found herself drawn to children who struggled with significant behavior problems. The more issues a child had, the more interested she was. She decided to change careers and studied clinical psychology, eventually researching psychiatric features and behaviors of people with developmental delays.
Elizabeth has a passion for her patients with PWS. While textbooks suggest there is a clear cut timeline for when children with PWS reach certain stages of hunger and behaviors, a deeper look has shown that it varies from child to child and person to person. Behavior is related to family factors, medications, and behavioral intervention. Extensive experience in PWS has helped her see that some children are being psychologically and behaviorally misdiagnosed. She says that symptoms do not equal diagnosis. Intervention can be implemented to change certain behaviors in PWS.
Hopeful about the future for PWS, Elizabeth sees promise in future medications that will treat hunger, food issues, and behaviors in PWS. Elizabeth believes intervention done at earlier ages can prevent many of the issues that are part of PWS and is hopeful that people with PWS can have a better quality of life, and maybe, one day, even independence.
Elizabeth Roof stresses the importance of parents participating in the upcoming Global PWS Registry: “The Registry will help guide research by allowing researchers to know what the PWS community wants studied about their children. If anyone wants to further research, people need to participate, and it’s important to realize that people who participate in the registry get to be a part of the intervention earlier.”
Elizabeth Roof’s top piece of advice for parents is behavioral intervention should start early; it should begin as soon as the child begins taking in the world around them. It’s important to reinforce good behavior from an early age. Adults often tend to do two things: First, they tend to ignore good behavior and instead focus on bad behavior. Secondly, they often don’t set up expectations about how they want their child to act in all settings. It is important to reward good behavior because it helps children understand what you expect from them. For example, parents can say, “When we go to John’s house, you will share nicely and talk in your grown up voice, so that you and John will have a fun play date”. If you decide that you can’t do that, we will have to leave and come home early. I know you want to have fun with John, so I am sure that won’t happen, aren’t you? “