A letter from Stacy Ward, CEO of PWSA | USA
Dear PWS Community,
I have to admit, there’s something I still love about back-to-school season. The fresh notebooks, sharpened pencils, new backpacks, and untouched planners all hold a little bit of magic. Even as adults, many of us can relate to that feeling of a fresh start. For our loved ones with Prader-Willi syndrome (PWS), returning to school can bring that same excitement, along with some understandable anxiety about changes, new expectations, and transitions.
One of the things I hear from families over and over again is how much individuals with PWS thrive when life feels predictable. Structure, routines, and clear expectations aren’t just helpful, they’re often essential. That’s why a little preparation now can make a big difference when that first school bell rings.
- Review the IEP: Before school starts, take some time to dust off and review your child’s IEP. Summer growth can bring new strengths, new challenges, and new priorities. Refresh yourself on accommodations, supports, behavior plans, communication strategies, and goals. If something no longer feels like it fits your child, now is the perfect time to connect with the school team so everyone starts the year on the same page.
- Make practice runs: Drive the route to school. Visit the building if possible. Walk through the morning routine. Practice carrying the backpack, finding the classroom, or talking about what the day will look like. What feels small to us can feel much bigger to a child who is worried about the unknown.
- Break new tasks into small steps: Practice the little things, too. If your child will be using a combination locker this year, consider purchasing a lock and practicing at home before school starts. Opening a locker under time pressure in a busy hallway can be stressful and having that skill already mastered can boost confidence and reduce frustration during those first few weeks. Breaking new tasks into smaller steps and practicing them ahead of time can make a big difference.
- Presetting:Talk through what will happen, who they might see, where they will go, and what to expect. Let them know what will stay the same and what might be different. For many individuals with PWS, surprises can be stressful. Familiarity builds confidence.
- Use visual supports: Visual supports are often worth their weight in gold during transitions. Consider creating a visual schedule, countdown calendar, social story, or picture checklist. These tools can help make abstract concepts more concrete and give your loved one something predictable to refer back to when anxiety starts to creep in.
- Get into school-year routines early: Begin shifting back toward school-year routines before the first day. Gradually adjusting bedtimes, wake-up times, meal schedules, and daily expectations can make the transition less abrupt and help everyone ease back into a rhythm.
- Practice patience: Most importantly, remember that transitions are a process. Some students will settle in quickly. Others may need more time and support. That’s okay. Celebrate the small wins. A successful practice run, opening that locker independently for the first time, a calm first morning, or a positive report from a teacher are all victories worth recognizing.
As a new school year approaches, I hope you take a moment to enjoy the excitement that comes with it. There is so much possibility in a fresh start. With a little planning, a lot of patience, and the supports that help your loved one thrive, you can set the stage for a successful year ahead.
From all of us at PWSA | USA, we wish you a wonderful school year filled with growth, learning, new friendships, and plenty of reasons to celebrate along the way. Here’s to new beginnings, new opportunities, and the confidence that comes from being prepared.
All the best,
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.