As I was growing up, my family moved to Switzerland. At the time, we were not aware that I had Prader-Willi Syndrome. As a child, I did very well in school. I attended an international school in Switzerland, it was difficult adjusting to a new school, especially in a foreign country. I moved to Switzerland in the 2nd Grade and when I started, I found out my class was further along in mathematics. They already knew how to do multiplication and division. So, I sacrificed my whole entire summer and learned my multiplication and division. When I returned the next year, turned in my work, my teacher thought my sister had done all the work and accused me of cheating. When I came home, I was so upset that I told my parents what had happened. The next day, my father came to school with me and stood up to my teacher and advocated on my behalf that in fact I had done all my multiplication and division work on my own.
While I was growing up, I had the opportunity to go to high school and work in a grocery store. I worked at Treasure Island as a bagger. I was the typical teenager, wanting to go out into the world and make my own money. I earned paychecks each week. I started to learn how to manage my own money. I even opened my own savings and checking account. I had my own ATM card. Looking back, I learned now that it was not the best setting for me because I was later diagnosed with Prader-Willi syndrome. But now I am currently in a fantastic setting where I am coaching Chess to Grade School students. I have outstanding colleagues that take the time to understand my disability and are willing to support me as I continue coaching kids on how to play chess. Trial and error are okay if you learn from it. In this case, as I look back at my high school years, I have learned that it was not fair to put me in a situation where I will be surrounded by food all the time.
Years later, I attended Northeastern Illinois University, while still living at home. I enrolled in a Help Program designed for college students who had disabilities. The Americans with Disabilities Act allowed people with disabilities to get extra time on their quizzes and exams. The beginning of each class you provided your professor with documentation showing you have a disability, and the teacher is required by law to allow me to take tests at the Help Office. During my freshman year, I was taking a Spanish course because it was required. First day, I submitted the documentation to my professor stating that I had a disability. In the document stated that I have the right to take all my Quizzes and exams outside the classroom. My professor took the legal document looked it over and asked me what I am supposed to do with this. I explained to her that it is a legal document stating that she was required by law to allow me to take my exams outside the classroom. She informed me that she does not allow her test outside of the classroom. So, when it came time for me to take my test, she would not allow to take it outside of the classroom, so I had no choice but take it with the whole class. Immediately after class, I went directly to the Chair of Foreign Language department explained to her the situation. I explained to her that my professor was refusing to allow me to take the exam at the Help office. She told me to report to her every day and to give her an update. The next day, I came to her office and explained that I was still having the same trouble. So, she gave me her personal telephone number and told me to call her every night and tell her each time my professor refused to follow the law. In this situation, I advocated for myself by standing up to me and speaking out that a college professor was breaking the law by refusing to allow me to take her tests outside her classroom. As a result, the teacher was dismissed. If you find yourself in a situation where you need to advocate for yourself, do not hesitate to speak up for what is right.
– Conor
#HopeIsHere #PWSawareness
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.