As told by her mom, Jennifer
The birth of our first child, Josephine and the weeks that followed in the NICU often brought to mind the term “brutiful.” We were so immediately deeply in love with Josephine and quickly so scared as well. Those days were so hard, but also full of beauty when we could see it. We had loving and supportive families, but just a couple of friends who had been through what we were going through with using a feeding tube and looking for a diagnosis.
When we found PWSA | USA, the “brutiful” slowly turned into beautiful. The darkness of grief and uncertainty gave way to the light of hope and the conviction that everything would be ok, just different than we had thought it would be. Our parent mentor was our life raft in the rough waters of the early days, keeping us afloat with great resources, depths of compassion and living proof that life would be good.
The Facebook groups that PWSA | USA hosts connected us to other families who were walking the same path, and allowed us all to share our fears, our triumphs and our knowledge. We were not alone anymore. This effect was only magnified by the PWSA | USA conferences where we not only gain incredible knowledge during sessions and individualized guidance from the global assessments, but incredible, deep friendships with families that I feel will forever be in our lives. We’ve also accessed family support services for invaluable resources as we developed our daughter’s IEP and provided information to her educational and therapeutic staff about PWS.
I’m so proud of PWSA | USA’s advocacy efforts to bring visibility and awareness about PWS to decision-making bodies in our government and the FDA. It is because of PWSA | USA that we thrive as a family.
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.