Shawn Cooper is 51 years old and lives with Prader-Willi syndrome. She resides in Georgia and has been on the Adults with PWS Advisory Board since it was first developed. 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 Shawn’s responses.
What is something you’re really good at?
Socializing with people, animals and support staff to manage my PWS.
What are some activities you like to do?
Walking, playing games on my tablet and phone, going out on outings in the community with support staff and family.
What makes you happy? What makes you laugh or smile?
Making healthy choices, having good support staff to keep me thriving to live, interacting with little ones and four legged pups and family.
What is something that makes you interesting?
Outgoing personality, loving and caring for others.
Why should people learn about PWS?
To be aware of how to manage and succeed with this unique disorder.
What is one thing people should know about PWS?
People with PWS can survive and thrive.
Is there something about PWS that people don’t understand?
PWS is a life challenging syndrome and a learning experience.
In what way does PWS challenge you?
To be on my toes and focus on facing different obstacles.
How does PWS make you special?
It allows me to relate to others with PWS and other syndromes and their families.
Is there something you would say to parents of newly diagnosed individuals with PWS?
Never give up on your child. Take time to listen so they can process their struggles and express what they are going through. When they have outbursts, listen to them so you can understand their feelings. People with PWS are a gift to their family and community.
To learn more about the Adults with PWS Advisory Board, please read our blog Adults with PWS Advisory Board Gathers in Phoenix: Shaping the Future of Support, Advocacy for Individuals Living with PWS – Prader-Willi Syndrome Association | USA
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.