Finding time for ourselves as caregivers of individuals with PWS is necessary for our well-being, though it may be challenging, especially when we need to have reliable and safe supervision for our loved one. Not only do we need to find someone trustworthy, but we also have to ensure they are well-versed in the challenges of PWS and specifically our loved ones. Where to begin and how to successfully impart the necessary information may seem like an overwhelming and daunting task. To help you we created a “Care Guide for Babysitters and Respite Workers”.
This packet helps you easily create an informative and potentially life-saving folder designed for the specific needs of your loved one with PWS. Thank you to Julie Casey, PWSA | USA volunteer and mom to Ryan (living with PWS) for inspiring the creation of this resource and letting us share it with the PWS community!
“Time alone with your partner is so important. It helps make sure you stay connected to each other and also gives you a break from caring for your child. I held off on respite for a long time, and didn’t utilize the service until my son was a teen. I wish I had done it sooner because it’s so nice to have regular date nights with my husband; we can actually have uninterrupted conversations! One reason I waited so long was because I felt uncomfortable leaving Ryan with other people, so to help me feel better about that and to make sure his caregivers are prepared I put together a packet of information. One of my personal passions now is raising awareness for PWS, so the packet also serves that purpose as the contents help educate the providers about PWS, and it gives me peace of mind knowing the right information is there in the event of an emergency.” – Julie Casey
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.