Prader—Willi Syndrome is complicated, but advocating for those living with it doesn't have to be.
Most of us parenting a child with Prader-Willi syndrome had never heard of it before the testing and diagnosis process, but man, how quickly we become the experts!
The trouble is,
there is so much to share, and what and how we do that changes depending on the audience.
I spent endless hours researching and scouring the Internet for the tools I craved, and I'm sharing them here in hopes that you don't have to do the same because, heaven knows, we have plenty on our plates already.
You'll find resources covering everything from hospital rounding to school best practices and behavior strategies.
NICU, Hospital Rounding, & PWS Medical Alerts
Here you'll find an array of resources to help you navigate the medical needs associated with Prader-Willi syndrome, including how to navigate hospital rounding and what medical information is most essential for medical providers, school nurses, and care givers.
School Resources
This collection is a treasure trove of resources to share with the school staff and at IEP meetings, including how to navigate behaviors and how to support the academic and social needs of students with PWS. You'll also find templates for classroom parent letters and "All About Me" info sheets that you can customize for your child.