On September 8, 2018, PWSA (USA) help a parent mentor workshop at the Monroe Carrell, Jr. Children’s Hospital at Vanderbilt University in Nashville, Tennessee. PWSA (USA) Parent Mentor Director, Diane Seeley, created the innovative workshop to educate parent mentors about a variety of topics, including current trends in dietary management, advantages and safety of various dietary supplements, the benefits of an active lifestyle, abnormalities in sleep/wake cycles, and growth hormone therapy. Twenty-seven parent mentors, together with four PWSA (USA) staff members, attended the event to hear from seven speakers, and to share personal experiences and learn from each other. The workshop helped attendees grow their knowledge of the “whole child” and introduced a comprehensive approach to both gaining knowledge about Prader-Willi syndrome, as well as how to effectively engage with new families in need of hope and support.
The goal of PWSA (USA)’s Parent Mentor Program is to utilize past experiences to connect with new families. Mentors not only learn more about PWS and its many facets of the spectrum but are also encouraged to build ongoing relationships by bonding through shared experiences (sharing stories and experiences is vital to the healing process; a concept underscored at the recent workshop when parent Sara Grosso opened her heart to share her NICU experience. The powerful story resonated with those in attendance, and Sara agreed to share her experience with other PWS families through social media). Parent mentors are also encouraged to show empathy and to gently guide new families. Newly diagnosed parents need to know that they CAN and WILL survive their child’s diagnosis, to know they have found their “tribe.”
Dr. Nathan Bingham, Pediatric Endocrinologist from Vanderbilt, opened the workshop with the statement, “If you’ve met one child with Prader-Willi, you’ve met one child with Prader-Willi” (an adaptation of Dr. Stephen Shore’s quote about individuals with autism). This truth is a guiding principle for parent mentors whose “job” is to empower families to make informed decisions and to find the right players to be on their children’s teams. As part of those family support teams, parent mentors don’t have to have all the answers. Instead, they have a first-hand understanding that every child and every family is unique; they can lovingly share their personal stories of hope that are so very valuable to newly diagnosed families.
Winnie White, Ed.D.
PWSA (USA) Parent Mentor
Mother of Sandy Kay
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.