Prader-Willi Syndrome Association (USA) is an organization of families and professionals working together to raise awareness, offer support, provide education and advocacy, and promote and fund research to enhance the quality of life of those affected by Prader-Willi syndrome.

Help for Educators

Brochure for Educators - Call our office for a copy of this great brochure!  Click here to see a PDF of it.

Frequently, children with Prader-Willi syndrome (PWS) face challenges in the school environment. Whether it is monitoring food, managing transitions, or identifying teachers and staff who can meet the unique needs of a child with PWS, ensuring an appropriate and effective learning environment can be a battle. If you have questions about Individual Education Plans or would like resources to share with your child’s teachers visit our “Links and Resources” section to find materials you can download.

If you have tried everything you can think of and still are unable to work with the school to create a successful learning environment for your child then we consider that a crisis situation. Sometimes a crisis situation will take the form of a suspension or other disciplinary action. Other times it might simply be a situation where a teacher or school staff are unwilling to adjust their methods and practices to address the needs of a student with PWS. If either are the case, please contact a Crisis Counselor for individual support. If necessary, we can put you and your child’s school in touch with one of our trained educational consultants who can work with you and your child’s school to work towards a positive solution to the crisis.

Related Service Professionals

It takes a team of professionals to help students with Prader-Willi syndrome (PWS) overcome and learn to deal with the challenges they face. Most students require services from Speech, Occupational and Physical therapists. The School Nurse may also be involved to help students with health concerns as well as educate school personnel about health issues. Because of high family stress in managing many aspects of PWS, the School Psychologist and/or a Social Worker may also be a part of a student’s educational team. We have included in our “Links and Resources” information for you to share with these professionals.

Students with Prader-Willi Syndrome

Students with Prader-Willi syndrome (PWS) are students you never forget. No matter what their age, they will teach you many things. Those that are very gifted in perseverance and ingenuity … teach you patience and problem solving. Those that require structure and consistency … teach you planning and organization. Those that are outgoing and friendly … teach you warmth and laughter. Students with PWS are as much individuals as any students. Some of the information provided will be very applicable to the student you are working with; some will not. Some strategies will work; others will not. With knowledge and understanding, students with PWS become productive members of their communities.
Download (PDF)

Creating understanding is one of the keys to developing a more welcoming and successful classroom environment for students with PWS. Rob and Debra Lutz, parents of Isabella, created this PowerPoint to promote understanding and awareness in Isabella’s elementary school classroom.  Click here for this tool and other awareness suggestions.

Preschoolers

The preschool years are an exciting time for little ones as they expand their ability to communicate and learn about the world around them. It is a time of growth and change. These youngsters strive to become independent and expand their problem solving skills. Most love to be leaders and helpers.

This can be a time when many young students with Prader-Willi syndrome (PWS) have minimal observable developmental delays. Speech and language is often the most common problem and challenge. Just like most non-disabled preschoolers, students with PWS may lack emotional and impulse control. It is a time when most students with PWS have more similarities than differences from their peers.
Download (PDF)

Related Service Professionals

It takes a team of professionals to help students with Prader-Willi syndrome (PWS) overcome and learn to deal with the challenges they face. Most students require services from Speech, Occupational and Physical therapists. The School Nurse may also be involved to help students with health concerns as well as educate school personnel about health issues. Because of high family stress in managing many aspects of PWS, the School Psychologist and/or a Social Worker may also be a part of a student’s educational team.
Download (PDF)

Links and Resources

Support:

 

 

 

 

 

 

 

 

 

 

 

Telephone: 800-926-4797

 

 

 

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