Question:
Any tips or tricks to help when our little ones get tired throughout the school day, besides a nap? Not all schools will allow for a student to take a nap during the regular school day.
Nurse Lynn’s Response:
Hello, and thank you for your question. So many of our children display excessive daytime sleepiness (EDS). Sleep issues are complicated for our folks; remember that the hypothalamus significantly regulates our sleep-wake cycles. First off, I would incorporate rest times or breaks into the IEP. Having your child be the teacher’s helper can help to keep them engaged and getting up out of their seat can be beneficial. The more the teachers understand the medical reason for the sleepiness, the more helpful it is. Hopefully, they can work with you to provide rest times and keep them engaged so learning time is maximized. I have included links to a health concern sheet to give the school so that they understand and can support your child, along with a link to our school success toolkit. This is helpful for IEP development and communicating with the schools. If you need help advocating for your child, call us; we are happy to help.
Additional Resources:
Health Concerns and the Student w/ Prader-Willi Syndrome (pwsausa.org)
School Success – Prader-Willi Syndrome Association | USA (pwsausa.org)
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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.