Trevor Ryan is 35 years old and lives with Prader-Willi syndrome. He resides in Arizona and has been a board member for 10 years. In an effort to learn more about our adults with PWS, and to shine a light on their lives and experiences, we asked our Advisory Board members some questions. Below are Trevor’s responses.
What is something you are really good at?
Research
Puzzles of all kinds
Electronics and tech
Finding things that others can’t
Making up random jokes and puns on the fly that are funny and corny
What are some activities you like to do?
Going to the gym, movies, water parks, swimming, museums, exploring new places, hiking, traveling, RV camping, amusement parks, family fun centers, spending time with my family and being an uncle to my 2 nieces
What makes you happy? What makes you laugh or smile?
Seeing the beauty and side of life with a perspective that not everyone has, makes me very happy.
Being surrounded by family, friends and people I love makes me happy
Doing the activities I love makes me happy
So many things make me laugh that I can’t list them all! Mainly, what I watch, see, hear and listen to. I make myself happy!
What is something that makes you interesting?
I am honest, kind, caring, loving, out going, talkative, trusting, thoughtful, unique, funny, flexible and a social butterfly! In high school, through the Yes I Can program, I helped plan, run and put on an annual full blown rock concert/music festival. I received free cd’s and met many bands.
While living in California, I passed the difficult exit exam called the CAHSEE which allowed me to graduate high school with a diploma.
Why should people learn about PWS?
PWS shows up different in every person and is a very unique rare disease syndrome. People should learn about it to help understand a person with PWS better.
What is one thing people should know about PWS?
The study and science of obesity and weight loss has moved to the front of science research. There will be major breakthroughs to be very positive about!
Is there something about PWS that people don’t understand?
People with PWS are all different and unique. We need to be treated as a person so don’t follow a rule book! PWS controls some of us and our behaviors but others control PWS!
In what way does PWS challenge you?
PWS challenges me by making it hard to get services or approvals for medications. I can’t have any normal job because food is involved everywhere and I need a job coach all the time.
How does PWS make you special?
PWS makes me special because of how my parents raised me and made me aware and educating me of the challenges I might have. I have a hard time knowing if I am full or not so that is not typical of people with PWS. Also, I live more independently and do more things than a lot of people with the syndrome. I am on the PWS Advisory Board and I am currently in my first of two year term as cochair.
Is there something you would say to parents of newly diagnosed individuals with PWS?
Don’t lose hope! Medications and opportunities change all the time, and those give you hope for the future.
Allow yourself to feel all the emotions that the syndrome causes, good and bad.
Do all you can to keep the support system of your family, friends and spouse! They will be the ones to get your through the tough days.
You’re not alone! PWS has a big family that you can access for resources, support, doctors, etc. They will become your extended family.
Trust me, because I have lived through many struggles and I am healthy and happy.
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.