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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Stop, Think, and Don’t React: Encouraging Parents to Be Proactive – Instead of Reactive or Confrontative – During Times of Conflict
Written By: Rebecca Thomas | Resource Creation By Bridget Morton | Design By Sunny DiMartinoParents may often find themselves resorting to ultimatums, threats of punishment, removing privileges, or simply throwing up their hands when their child with special needs is having a meltdown and exhibits demanding or irrational behavior. Before exercising rigid authority, which often worsens challenging behavior, parents can instead use personal coping strategies to help themselves stay centered and focused so they remain calm in the face of conflict and, in turn, help their child become more calm as well.
The Sometimes Long and Winding Road to an Individualized Education Program
Written By Geoff Campbell | Resource Creation By Bridget Morton | Design By Sunny DiMartinoMaintaining an open line of communication with parents is important and often difficult, even in the best of circumstances. This is especially true when a struggling student is being evaluated for a possible disability—and an IEP—and a teacher’s continued updates throughout the process can provide worried parents with much-needed reassurance.
When Children with Special Needs Have Siblings
Written By: Geoff Campbell | Resource Creation By: Bridget Morton | Design By: Sunny DiMartinoParents may often feel
challenged when raising a child with special needs. But when there are other
children in the family and that special-needs child has a sibling, parents often
feel even greater stress when trying to give both children the time, support,
and attention they need.
Returning to Safety: Understanding and Reducing Self-Injurious Behavior
Written By: Julie Wallach | Resource Creation By: Bridget Morton | Design By: Sunny DiMartinoA seven-year-old girl's increasingly extreme self-injurious behavior requires understanding, thoughtful solutions, and careful planning. After a very challenging period of time, Lyla* receives the adult understanding, special education, and therapeutic care she needs to keep herself safe from her own harm.
When Helping Can Hurt: Parent Enabling of Children with Special Needs
Written By: Agata Antonow | Resource Creation By: Bridget Morton | Design By: Sunny DiMartinoAll parents want to help their children, and that can be especially true of parents who have children with special needs. Unfortunately, doing too much for your child may mean that they don’t learn some of the basic life skills they’ll need later in life.
Tracking the Clues: Using Functional Behavioral Assessment to Help Kids with Special Needs
Written By: Agata Antonow | Resource Creation By: Bridget Morton | Design By: Sunny DiMartinoSometimes, children with special needs exhibit behaviors that seem random and are difficult to understand, leaving parents with the difficult task of figuring out what they mean and how to respond. In these situations, a set of tools known as Functional Behavioral Assessment (FBA) can help. Many parents have not heard of FBA, but counselors and therapists use this approach to systematically gather specific data about behaviors and decide on the appropriate intervention. FBA strategies can also be used in the home by parents struggling to understand specific behavior problems—and how to address them.