Contributed by Denise Servais
I recently had the opportunity to attend a luncheon hosted by Chad Greenway’s Lead The Way Foundation. Chad Greenway, a former Vikings football player, along with his wife Jenni and many Twin Cities leaders associated with the foundation, were among the 120 attendees. The foundation’s purpose is to support families with medically complex children. At this event, I was invited to share my story, alongside other moms, about my journey raising a special needs child. As someone not used to sharing my story publicly, I felt nervous speaking to a large audience. I’ve heard Dorothea Lantz, PWSA’s Community Engagement Specialist, talk about the importance of sharing our stories. I recognized the importance of stepping out of my comfort zone to raise awareness about PWS. Although sharing my experiences often brings up strong emotions, which can make it difficult to share my story without becoming emotional, I am grateful for the opportunity. There is value in sharing one’s story, as author Brene Brown puts it: “When we deny our stories, they define us. When we own our stories, we get to write a brave new ending.” It is through these types of experiences I’ve learned that being vulnerable can connect us with others and make a positive impact in our lives and communities.
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Tell us about a time you advocated for your child. Or share a heartwarming or inspiring story about your loved one with Prader-Willi syndrome. We love to spotlight stories of advocacy and hope, big and small.
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.