Sleep health is essential for everyone; it is just as important to take care of ourselves as parents and caregivers as it is for those living with Prader-Willi syndrome (PWS). We understand that disordered sleep has implications for cognitive outcomes, mental and physical health, and work and school performance. Sleep disturbances can occur from many factors, including weight, metabolic variations, and type of genetic imprinting. There are additional concerns to be aware of when it comes to persons diagnosed with Prader-Willi syndrome.
Sleep-wake patterns are often disrupted for those diagnosed with PWS. Frequently, excessive daytime sleepiness presents difficulties when attending school and work. Many of our children have built-in rest periods during the day, both at school and work. Those that require these rest periods during the day may hurt academic and work progress.
The importance of employing a combination of methods to address sleep health in our loved ones can not be understated. Speaking with your doctor about testing for Obstructive Sleep Apnea (OSA), sleep-related hypoventilation, narcolepsy, or the need for having tonsils/adenoids removed to improve the quality of sleep may be considered.
Other methods, including weight control, medication, and establishing aย sleep schedule with sleep routines, can improve overall sleep health. Keeping a sleep log will be useful when speaking with healthcare providers about any sleep concerns you may have. The Centers for Disease Control (CDC) recommend that infants get on averageย 14-16 hours sleep per day, for children 1-12 years of aged 11-14 hours, for 13-18 years old 8-10 hours and adults should get seven or more hours of sleep per day. Please be aware of any changes to sleep patterns and report them to your healthcare provider.
Contributed by Lynn Garrick, RN
Perry A. Zirkel has written more than 1,500 publications on variousย aspects of school law, with an emphasis on legal issues in special education.ย He writes a regular column for NAESPโsย Principalย magazine and NASPโsย Communiquรฉย newsletter, and he did so previously forย Phi Delta Kappanย andย Teaching Exceptional Children.
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.
Dr. Amy McTighe is the PWS Program Manager and Inpatient Teacher at the Center for Prader-Willi Syndrome at the Childrenโs Institute of Pittsburgh. She graduated fromย Duquesne University receiving her Bachelorโs and Masterโs degree in Education with a focus on elementary education, special education, and language arts.
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.
Staci Zimmerman works for Prader-Willi Syndrome Association of Colorado as an Individualized Education Programย (IEP) consultant. Staci collaborates with the PWS multi-disciplinary clinic at the Childrenโs Hospital in Denverย supporting families and school districts around the United Statesย with their childโs 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.