I was 10 years old when my brother was born in the summer of 2003. This was an extremely exciting time for me as I was the youngest of my three other siblings and couldn’t wait to finally have a little sibling of my own to pick on. Admittedly, I was also a little jealous since I wasn’t going to be the baby of the family anymore (a position I held very well). My excitement was quickly replaced with confusion and worry after my brother received his formal diagnosis of Prader-Willi syndrome. The diagnosis was hard to comprehend as a 10-year-old. I completely unfamiliar with PWS and had very little experience with any developmental disabilities. I remember thinking “What happens now? What does this mean for me, my brother, my family?” There were so many questions but so few answers. But, from the beginning I have loved my brother unconditionally as have all my siblings. We take on any challenges he faces together, as a family.
Facing my brothers challenges together did get difficult as we all got older. Being so much older, I was away at college for the years that proved to be the hardest for him. The years when other kids at school are no longer inclusive and understanding, the years when he received many more diagnosis on top of PWS (Tourette syndrome, scoliosis, and many hospital trips for an unknown outbreak of hives across his body), the years when he began to understand he is slightly “different” than his peers. It was hard not being there for him or to protect him from unkind classmates. However, through everything he has remained a kind-hearted and caring boy towards anyone he may encounter. He never lets hardship dampen his spirit or change who he is.
Despite everything, it is not difficult to think about my brother’s as anything but good. He has proven his resilience, his strength, and his ability to never let anything get him down. He is no different than anyone else and he can do anything that he puts his mind to. I see a future for him filled with meaningful relationships, an occupation in music (which he truly enjoys), living autonomously and independently. Even if there are unforeseen challenges in his future, he will never be alone. He will always have me, our other siblings, and our parents in his corner, defending him and rooting for him.
I would like to thank my brother for teaching me more than I could have ever imagined. He has taught me patience, compassion, and an understanding for others that I had not previously possessed. He showed me how to carry myself with grace and hold my head high even during the darkest of days. My brother exudes kindness and love unconditionally everyone he meets. He accepts everyone for who they are and inspires me to do the same. Most importantly, I have my brother to thank for leading me towards my career path. I am currently working towards my Master’s in Applied Behavior Analysis and will work with individuals with Autism Spectrum Disorder (a service he received when he was younger). Without his influence, I would not have found my passion nor the understanding I have towards my clients. For that, I say “THANK YOU!”
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.