As a parent of a child who has Prader-Willi syndrome, you might wonder what tools and resources your child might find helpful. Here, Spencer Ginyard, a young man with PWS who recently graduated from college, shares a few tips:
- Smart Pen: Be sure to purchase the package that has the pouch, ink, headphones, and software adapter that hooks into your child’s computer or lap top. Also purchase the special notebook that has smart pen appliances inside it. (Learn more here.)
- Tape Recorder
- Work with a speech therapist if necessary
- Look for a school for your child that has a Special Education program. Make sure the school has a teacher’s aide in the program as well.
- Special Aide/Tutor
- Talk to PWSA | USA for help in providing the safest environment for your child so they won’t be able to sneak food.
- Ask PWSA | USA to educate your local school district and create a plan with the school so your child doesn’t have any temptations or put themselves in a position of overeating.
- Ask teachers if they could stay after hours or make arrangements to help your child on the things that he or she didn’t understand in the class lessons.
Jennifer Bolander has been serving as a Special Education Specialist for PWSA (USA) since October of 2015. She is a graduate of John Carroll University and lives in Ohio with her husband Brad and daughters Kate (17), and Sophia (13) who was born with PWS.
Perry A. Zirkel has written more than 1,500 publications on various aspects of school law, with an emphasis on legal issues in special education. He writes a regular column for NAESP’s Principal magazine and NASP’s Communiqué newsletter, and he did so previously for Phi Delta Kappan and Teaching Exceptional Children.
Evan has worked with the Prader-Willi Syndrome Association (USA) since 2007 primarily as a Crisis Intervention and Family Support Counselor. Evans works with parents and schools to foster strong collaborative relationships and appropriate educational environments for students with PWS.
Dr. Amy McTighe is the PWS Program Manager and Inpatient Teacher at the Center for Prader-Willi Syndrome at the Children’s Institute of Pittsburgh. She graduated from Duquesne University receiving her Bachelor’s and Master’s degree in Education with a focus on elementary education, special education, and language arts.
Staci Zimmerman works for Prader-Willi Syndrome Association of Colorado as an Individualized Education Program (IEP) consultant. Staci collaborates with the PWS multi-disciplinary clinic at the Children’s Hospital in Denver supporting families and school districts around the United States with their child’s Individual Educational Plan.
Founded in 2001, SDLC is a non-profit legal services organization dedicated to protecting and advancing the legal rights of people with disabilities throughout the South. It partners with the Southern Poverty Law Center, Protection and Advocacy (P&A) programs, Legal Services Corporations (LSC) and disability organizations on major, systemic disability rights issues involving the Individuals with Disabilities Education Act (IDEA), Americans with Disabilities Act (ADA), and the federal Medicaid Act. Recently in November 2014, Jim retired.