Prader-Willi Syndrome
Prader–Willi Syndrome is a rare genetic disorder in which seven genes (or some subset thereof) on chromosome 15 are deleted or unexpressed on the paternal chromosome, resulting in low muscle tone, short stature, incomplete sexual development, cognitive disabilities, problem behaviors, and a chronic feeling of hunger that can lead to excessive eating and life-threatening obesity.
Featured Child
This is Violet
For Violet, Prader-Willi Syndrome impacts everything from family and social relationships to education to her own self-image.
Featured Articles for Prader-Willi
Finding the Right Out-of-Home Placement for Your Child with Prader-Willi Syndrome
Finding the right placement for your child with Prader-Willi Syndrome can be difficult. You may go through numerous homes before you find the one that is a fit for your child and that can help him or her in the best way possible. Read how one parent never gave up and sought out the help that she knew her child needed, in an environment that worked for him!
Children with Prader-Willi Syndrome: Impulse Control Issues and Dishonesty
When the lies about food become too much to handle, there might be another factor at play. Follow along as Ben's struggles with food are taken to the next level and begin to become more than his parents can manage alone.
I'm Just Hungry
Last year, Chelsea McCutchin worked on an MyPath Library book about Prader-Willi syndrome and was inspired by the beauty and the pain of those who suffer with this fascinating disorder. Here, Chelsea expresses what it feels like to be caught inside of PW through a poem called a sestina.
Latest Articles for Prader-Willi
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Binders and Breakdowns: A Mother’s Introduction to the Individualized Education Plan Process
Written By: Julie Wallach | Resource Creation By: Bridget Morton | Design By: Christy BuiAn Individualized Education Plan takes time to create and implement, often requiring a year or more of testing, meetings, and decision-making to determine appropriate educational instruction and supports for a student with special needs. When Angie digs into the process, she learns more about education than she ever thought possible, and wades through bureaucracy, advocating for her son.
Scaling Emotional Hurdles in the Classroom with Emotional Scaling
Written By: Geoff Campbell | Resource Creation By: Bridget Morton | Design By: Christy Bui, Sunny DiMartinoSome children have difficulty understanding their emotions, which can sometimes lead to class-disrupting episodes of anger. By working closely with students and using strategies like emotional scaling, teachers and educators can help students better understand emotions, changes in intensity, and coping strategies, which often leads to increased self-control in the classroom.
Swing Low, Swing High: Parents Moving into Emotional Scaling for their Daughter
Written By: Nancy Yeang | Resource Creation By: Bridget Morton | Design By: Christy Bui, Sunny DiMartinoParents of children with Reactive Attachment Disorder (RAD) and other trauma and stressor-related disorders try many techniques to mitigate the problems with emotion regulation and aggressive behavior. Emotional scaling can help children with RAD to better understand their emotional experience in order to regulate their emotions and behavior before experiencing outbursts of agitation and aggression.
Through His Eyes: Natural and Logical Consequences at Home
Written By: Nancy Yeang | Resource Creation By: Bridget Morton | Design By: Sunny DiMartinoA father struggles with having his son, who has behavioral issues, understand the consequences of his actions. After a visit with a behavioral counselor, he learns about behavioral strategies, and also finds a window into his son’s world that allows him to better see and understand his perspective.
Helping Students Follow Classroom Expectations and Rules with Collaborative Problem Solving
Written By: Amanda Ronan | Resource Creation By: Bridget Morton | Design By: Sunny DiMartinoCollaborative Problem Solving (CPS) is an effective alternative to delivering negative consequences to students who aren’t consistently following basic classroom rules and expectations. A relationship-based, nonconfrontational approach, CPS helps teachers and students work together to understand everyone’s concerns, then arrive at a mutually beneficial solution.
Prader-Willi Syndrome: It’s Not Just the Number on the Scale
Written By: Alison Hennessee | Resource Creation By: Bridget Morton | Design By: Sunny DiMartinoParents of children with Prader Willi syndrome begin preparing for the food-related challenges associated with this disorder from day one. With a wealth of PWS literature on how to handle the constant food-seeking behaviors, parents learn to lock cupboards, manage meals, and limit pocket money. But other, less-discussed characteristics of PWS, particularly extreme and sometimes violent behavioral problems, can be just as difficult to handle. In this article, you’ll read about the challenges that Natalie faces as a result of her son Jason’s meltdowns and learn some strategies for handling these episodes.