The Value of Specialized PWS Placement

*This article appeared in PWSA (USA) newsletter The Gathered View
Samantha sits at the lunch table with her friends, laughing, gossiping and talking about things that teenage girls talk about. She looks forward to after-school activities, visits home and shopping trips. Samantha is a regular girl, doing what girls do–going to school during the day and having fun with her friends after school and on the weekends. At her school Sam is a typical student; she is not an outsider, not the girl with the behaviors or mountains of challenges to overcome. She is popular and well-liked by her teachers and her friends.
Sam has PWS, but she is not “that student”, or one of the students in the separate classroom because most of her peers also have a diagnosis of PWS. Samantha came to Latham Centers in November 2009 from a special needs school in New York. That school had years of experience with special needs, but had no other children with PWS and, as frequently happens, expected Sam to fit into their program because their program was not suited to meet her needs. But as many of us who have worked with, loved and cared for people with PWS know that this diagnosis is unique, and without a deep understanding of PWS a child or adult can unintentionally be placed in a setting that can jeopardize their lives.
Sam’s anxiety continued to increase and her feelings of helplessness were displayed as serious self-injury which, on at least one occasion, led to the need for emergency lifesaving surgery.
She came to Latham Centers with severe self-injurious behaviors. She wore a helmet, mitts on her hands and had 2:1 supervision 24/7. Upon admission Sam’s helmet and mitts were removed, and her new life began. Transitions are never easy and this was no exception, but nobody gave up on Sam. Instead of Sam being asked to fit into the program, the program molded itself to fit her needs. Soon her anxiety started to decrease and the incidents of self-harm decreased as well.
Today Sam has best friends, crushes on boys in her class and recently made high honor roll at school. In other words, Sam has a full, meaningful life that she is proud of. From an angry, scared and withdrawn girl, she has flourished into a charming, outgoing, compassionate and brave young woman with the help of her family, teachers, staff and peers who understand her and help her to use her many strengths to overcome the challenges that are inherent with PWS. 

Patrice Carroll is Latham Centers’ world-renowned Prader-Willi Syndrome specialist. She works with Latham Centers’ residents with PWS, their families and consultants, continuously learning and teaching about PWS best practices. 


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