How do we prepare for the holidays? Even in “typical” homes, preparing for the holidays can be challenging. Our planning may be filled with questions like who is hosting, who is bringing what dish, who is invited, which family are we visiting on which day, who gets the presents, who makes the mashed potatoes, is cherry pie even allowed? When PWS is introduced to this situation, the holiday preparation stress skyrockets to sometimes seemingly unbearable proportions.
So how do we cope? How do we actually prepare for the holiday with PWS? You’ll find a list of blog posts and resources below to help you make informed decisions, but of course, how families prepare and navigate the holidays is unique to each family. There is no one way. We cannot expect what works for one family to work for everyone. Some families continue to avoid sugar throughout the season. Other families allow their loved one some indulgence. And some families just stay home.
There is no blueprint for how to navigate the holidays with PWS. No template to follow or guide that will give you the answers. There are stories of what has worked for other families, suggestions on how to approach certain challenges, reminders of where the biggest concerns lie. We can stick to the PWS protocol no matter what or allow some freedom with safe choices.
It might not be easy. It might be challenging.
We can’t control every situation, but we can learn to be versatile. We can be flexible and change our decisions as the needs of our family changes, without comparing our choices to what we may see others do. We can develop in ourselves the confidence that we can walk into a situation and find the solution that works for our family. We can build around us a team of support, a gathering of friends and family who understand our child and support us.
We can remember that we have the strength, the knowledge, (and sometimes the healthy snacks packed in our bags) to get through this time with relative ease and as much joy as we want to bring to the table. We can remember that we have the support of our PWS community and the staff at PWSA | USA when in need.
Resources:
Below are some resources to help you make informed decisions on how to navigate your holidays with confidence and ease:
Celebrate Thanksgiving Safely – Prader-Willi Syndrome Association | USA
Tips and Techniques for a Safe Holiday Season – Prader-Willi Syndrome Association | USA
Holidays and PWS Food Security – Prader-Willi Syndrome Association | USA
Resources to share with your friends and family:
A Letter to Friends and Family – Prader-Willi Syndrome Association | USA
Supporting-Someone-with-PWS_Blue-1.pdf
How-does-a-Person-with-PWS-Think.pdf
It Starts With Hello: Katie’s Story About Prader-Willi Syndrome | Book Reading with Author Dr. Pacha
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.
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 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.
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 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.