PWS Blog

Back to School Tips

Posted: Aug 28, 2014 by The Children's Institute


It's back to school time, which brings new teachers, new friends, and sometimes new challenges. Our inpatient teacher, Amy McTighe, PhD, MEd, answered some questions that she frequently hears from parents of children with Prader-Willi syndrome. Read on, and make it a great school year! 

Q. How do I educate my child’s school about the importance of food security and Prader-Willi syndrome?

A. The PWSA-USA has an amazing school folder of resources that can be sent to schools to educate professionals about food security and Prader-Willi Syndrome. Topics of informational packets include descriptions of PWS, alternatives to using food in the classroom, information for transportation personnel, behavior management strategies, food security, homework, assistance with diet management, and key components for success in the school setting. These packets are a great way to start educating the school about PWS and food security. It is also appropriate in the Supports for School Personnel section of the IEP that all professionals involved with the student have an in-service training/workshop about PWS to learn how to better support the child in the school environment.

Q. Food is frequently used as a motivational tool and for celebrations in schools. Do you have any suggestions of alternatives to food for me to share with my child’s school and teachers?


A. Interview the student to determine activities, television shows, characters, etc. that they are interested in. After interviewing the student, motivational tools such as stickers, playing cards, word searches, puzzles, hand held games, crafts, art supplies, etc. related to their interests might be used to reinforce and motivate the student in the       classroom.

If food is going to be offered to other students during celebrations, offer that food item at the beginning or the end of the celebration. Have the student with PWS choose a peer buddy and remove both students from the classroom during the time the food is served. Once the students have been removed, provide an activity of equal interest in which they can participate and then return to the classroom once the food has been cleared and secured from the classroom area.

Q. How do I communicate with the school about my child’s progress and support services?

A. It is essential to set up a system of weekly communication with the school in order to keep track of your child’s progress. This form of communication should be included under the supplementary aides and services section of the IEP. A simple communication book (a spiral notebook) in which school professionals, teacher’s aides and parents write notes has worked for some families. Other families have requested emails or phone calls from each teacher to the parent on a weekly basis. It is important to find the communication system that works best for your family structure and implement the system to relay student progress.

Q. What resources are available to me if I feel the school isn’t meeting the expectations 
of educating a child with Prader-Willi syndrome?


A. The Children’s Institute of Pittsburgh's Center for Prader-Willi Syndrome is always a resource for families if your child’s school is not meeting the educational expectations.

We can talk you through ways to problem solve with the schools in order to get what your child needs. PWSA-USA also offers educational consultation services. In addition, there are educational advocates in the community, as well as special education attorneys who would be willing to assist in providing the appropriate supports to students in the academic environment.


Q. How do I best support my child when they are completing homework?

A. Generalization of learning from one environment to another is often something that is difficult for students with PWS. This means the child may have a clear understanding of an academic concept at school and then get home and have difficulty with the same task. Homework often creates a time of anxiety and frustration for the student with PWS. It is completely appropriate to recommend that homework be reduced to a limited time period at night (e.g. one hour) and that the student is not penalized for not completing all of the work. It is essential to include these types of accommodations under the supplementary aides and services section of the IEP in order to reduce the stress of homework during the school year.


Q. What would you suggest I do to help educated my child’s classmates about Prader-Willi syndrome?

A. For younger children, there is a children’s book called "Michael and Marie: Children with Prader-Willi Syndrome" written by Valerie Rush Sexton and Debbie Erbe Fortin. This book is great to read to students in the classroom. A lesson plan is included in the back of the book and the goal of the lesson is to help students understand the feeling of being hungry that the PWS child may feel all the time. For older students, encourage them to practice self advocacy skills by preparing a presentation and question and answer session about PWS and present this to their classmates. Schools have also held school wide assemblies about PWS for students of all ages.


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