contributed by Amy McDougall
“Alone, we can do so little; together, we can do so much.” – Helen Keller
Community is such a powerful thing. Last year, I decided to start hiking in an effort to meet some personal goals. I reached out to another PWS mom in my state in hopes of finding a hiking partner; however, what quickly developed was not only a strong friendship, but also the recognition of what a respite these jaunts in nature had become. As we commiserated one day about the varied challenges involved with PWS, while simultaneously admiring our surroundings, we pondered whether other PWS moms might enjoy our expeditions as much as we did. What started with that simple question turned into an incredible weekend of laughter, friendship, blisters, love, organizational planning, and reminders of the fact that the best way to truly live this special needs life is to walk side by side with others.
The inaugural PWS Moms’ Hiking Weekend took place in the Adirondack Mountains of New York on June 20-23, 2024. Thirteen moms from across the eastern half of the United States came together to share a house, meals, and incredible scenery. I admit, with this being my first venture into pulling together a retreat weekend, much of the organization was not highly professional. After posing a question on social media about interest, I created a Facebook group where I posted polls regarding dates and location. The registration form was a Google form, and payments came to me through check and Venmo, after which I rented a house. Our daily schedule was rather loose, with only a group dinner time being set (we ate together at the house two nights and went to a restaurant in Lake Placid as a group the other night). I had done some research in advance on hikes of varying levels, with the group talking each evening about how they would like to divide up and what time each subgroup would like to leave. We had quite the range of abilities (some who had never hiked before all the way to someone training for an ultramarathon), yet everyone was able to find hikes that were both reasonably challenging and enjoyable.
I am so grateful to the moms who made this such an epic weekend. It’s not a simple thing to take a few days away from your family when you’re a PWS mom. There is so much planning and organization that needs to be invested into ensuring that things go as smoothly as possible for your child while you’re gone. So much anxiety (and unfortunately a degree of guilt) about not being readily accessible. It is difficult to actually allow yourself to relax, while also taking a chance on building relationships with other moms who were only a name on a Facebook group until you walked through the door of a shared house. Yet when I surveyed the group after we had all returned home, the recurring themes were about feeling accepted, understood, and refreshed. And a great deal of humor- or as Sarah defined it, “quotable shenanigans” …
I believe that my fellow moms sum our adventures up best:
“The only thing missing in these pictures is the soundtrack of laughter and the feeling of peace we experienced from taking care of ourselves for a few well deserved days.” ~Lisa
“Opportunities like this rarely present themselves. We were a mixed group of 13 who didn’t all know each other at the start. We all left friends and expanded our support system. We bonded over shared PWS experiences, good and bad. I left feeling recharged and relaxed. Honestly, my whole physical body feels better. I’m sure it’s the combination of outdoors, hiking, and just letting it all go for a few days. If this sounds interesting to you at all, Just Do It!” ~Cindy
“We are connected by a diagnosis, trauma, grief, and fear – but most importantly by courage, patience, and unconditional love. Never underestimate how powerful it feels to say yes to something uncomfortable. I’ll be forever grateful for this weekend and for these incredible women. Until next year…” ~Linsey
Attend the next PWS Moms’ Hiking Group
Plans are already in the works for the next PWS Moms’ Hiking Weekend, we’ve tentatively set a date (October 2025) and are starting pre-registration. If you are interested in possibly joining the group or would like to organize a similar event and want to discuss logistics, please feel free to reach out to Amy at amy.l.mcdougall13@gmail.com.
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.