Jacob’s Story, as told by his mom, Teri:
“Jacob is my 25 year old son with UPD PWS.
Thankfully PWSA has been there for us since Jacob was born. We have definitely had challenges over the years.
Those teenage years were filled with behaviors so we tried an ISL (independent supported living) in Kansas City, MO but it didn’t work out. After 5 years in Kansas City, Jacob moved back home. He’s been home for 2 years now and is much better.
The toughest time was his psychosis 3 years ago with 2 weeks in the hospital. We are still adjusting meds after 3 years. That will always be our biggest fear.
During those years, PWSA | USA was always there for us. From crisis calls during the behaviors to get Jacob out of the house, to taking calls to help the staff at the ISL try to understand PWS to help get him back home. Now, PWSA | USA is helping us prepare for retirement and trying to see where Jacob will be when I am not able to take care of him any longer. It is a challenge, but to know PWSA | USA is still there, has helped us the most over the years. The Facebook community for parents has been great help as well.
Jacob is so happy now. There are still issues with behaviors but they are much better now with meds and support. Jacob goes to his day program and loves being out in the community. We now have an ABA behavior therapist that helps and the staff at Jacob’s new day program are trying to get familiar with PWS. We also finally have a great support coordinator through the state that helps us get support. Advocating for Jacob through the years has been tireless and is endless. I don’t know how I would have known even where to begin without PWSA | USA always being there for us. Thank you so much!”
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.