Thinking back to NICU, and being told “I don’t know what’s wrong with your baby. But something is, and it’s pretty serious.” I never ever thought we’d get to the point where we could could just live our lives casually. Casually cuddling on the couch. Casually packing up and heading out for a walk. Casually having movie night. Casually going to the park. I thought my entire life was going to be spent living with the heartache of a syndrome I had no control over. Worrying about we might be able to accomplish in life, and the stuff that was robbed from us. What life was going to look like in the future. But our reality is Prader-Willi syndrome is not our lives. Our boys are our lives. My life is spent feeling so so so incredibly blessed, and humbled that I was given these special little lives to raise. Prader-Willi syndrome helped shape our family. It has given us SO much more than it will ever take from us. Prader-Willi syndrome brought us 2 other boys with special needs (one of which also has Prader-Willi) , and taught us life is not about being able to keep up with others, and being textbook perfect, or worrying about what our future MIGHT hold. It’s sitting down and enjoying my boys in the present. That’s what gives me hope for the future. Knowing where we’re at, and where we have been is absolutely mind blowing, and I can’t wait to see what our future holds, and what else my boys can teach me.
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.