Hi, my name is Aran (pronounced Aaron), and I am part of the Prader-Willi Syndrome family. I was diagnosed at three weeks old. I was fortunate that my state has a fantastic Early Intervention program, and I was able to start physical and occupational therapy within the fourth week. That work was tough, but it helped me to be my very best. Sure, I was late on all of my milestones, but I sat up, crawled, and even walked by the time I was three!! Everybody told my Mom and Dad that I would get there on MY time, not the schedule that everybody laid out for kids my age. I added a speech therapist along the way because I struggled to form my sounds into words. It didn’t take too long (longer than Mom and Dad wanted to wait though!!) and I was making syllables, and eventually words. I still struggle with certain sounds and longer words, but I keep working hard, and it is coming.
I am in 4th grade in a special classroom now, and I find school very challenging. I am fortunate that my school has the same therapies available as I had in Early Intervention (Physical, Occupational, Speech), and I can continue the hard work I have been doing since I was little. I have a lot of good people in my classroom and in my school who help me and look out for me, because I can find trouble everywhere!! I have my good days and bad days when it comes to my behavior, but my teachers are fun and they reward me from the treasure chest for my good behavior days, so it is always better for me to be a good boy.
When I get home from school, I have a nice person from our county disability services who takes me off the bus and stays with me while Mom and Dad finish work. I get to be at home and do the fun things I like to do like watch my shows, dance to music, play in the yard, and ride my bike. I haven’t mastered a two-wheeler yet, but I have a big-boy trike that is perfect for my size, and I can ride it everywhere!! On certain nights, I have horse riding, or as Mom and Dad say, Equine Therapy. I like to ride, and it works my body out really well. When I am done, my muscles are tired in my legs and my belly. I also have to think, because the instructor gives me two, three, and even four step directions to follow, so I have to be sharp. I am so lucky to be able to ride, and I have great people to teach me.
Let me tell you; Prader-Willi doesn’t hold me back. Yes, it has created challenges for me, but because I have such great encouragement from my Mom, Dad, and brother, my family, my teachers, and my community, I can do anything I put my mind to. It doesn’t phase me that I am not quite at the pace of my neurotypical peers. I am accepted for who I am and what I can do. Don’t give up, keep fighting on, and thank you for being part of the Prader-Willi Syndrome Family.
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.