Contributed by Jennifer Lloyd
When it comes to finding people who understand PWS, it can feel isolating – especially after a new diagnosis.
Silas and Nora met at Physical Therapy at a few months old. I remember his PT telling me there was a little girl with PWS that was going there and I knew we had to meet! Both of their PTs set us up in the gym one day and I approached Jordan and the rest is history!
When Luke was in the NICU, Hillary posted a video on Facebook that really touched me and I reached out to her. A few months later we headed to Orlando to visit Disney World and to see Dr. Miller. Both of our families met up and ever since we see each other once a year! Even though we don’t get to hang out as much as we would like, the boys bond is incredible! They always pick up where they last left off.
Rachael and I were introduced through our local Speech Therapist and we immediately set up a play date. Not only do Silas and Finn always have a great time together, so do their older sisters!
Silas has had numerous play dates, day trips and vacations with Nora, Luke and Finn on separate occasions. Finally now in 2024, we were able to coordinate everyone’s crazy schedule and all four kids were able to get together! When they say it takes a village, it really does! Watching the kids grow up together is amazing and so is having the loving support of others who “get it”.
I highly encourage others to reach out to other PWS families whether it’s locally or over social media and find support! I truly believe this has been a huge factor in my mental health as well as sharing ideas and things with each other that have worked for our littles.
Having these friendships has been nothing short of amazing, not only for Silas but also for me! Seeing how we all celebrate each child’s milestone and love all of the kids like our own just melts my heart. It’s truly indescribable!
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.