"I would like to send a huge thank you to everyone at the Family Support team. The last couple of years have been extremely stressful. My child is really struggling with behavior issues and stealing food. We've had deputies at our house a half dozen times, we've had to call and she has called them on us as well. She's been admitted to three different hospitals and had multiple extended stays at behavior treatment facilities. Always the result of stealing food, she's done plenty of damage in the house and it's certainly taken a toll on all of us.
Whenever it was too much to handle, I could always count on PWSA | USA to help us through it. Just knowing there was someone who knows what we're going through and is willing to listen, has given me the strength to persist. Doctors, nurses, deputies, family, friends, etc. simply can't relate to what we're going through. They all mean well, but nothing can compare to another parent who's been there, done that. The Family Support team has shown incredible patience as I railed and swore and said things I should never say, and they always made me feel like there is hope, and we will get through this episode.
It takes really special people to be there for those that are exhausted, embarrassed, ashamed, and feeling like the worst parent in the world. PWS is hard on everyone, and I'm grateful there are people like those on the Family Support team who pick us up and let us know we're not alone. Keep up the great work!! My family appreciates all of you!"
- Anonymous
If you would like to share how PWSA | USA's Family Support team has made a difference in your life, please email us at communications@pwsausa.org.
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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.