This poem was submitted by Spencer Ginyard, a young man who has Prader-Willi syndrome. Spencer recently graduated from Cal State University, San Bernardino where he received a bachelor’s degree in English with an emphasis in creative writing. He is an honors recipient from Delta Alpha Pi Honor Society.
To my Great Grandma, Grandma Lee
suffering! moaning! Can hardly breathe
fighting against a torture miserable cancer
called Alzheimer’s Disease
Lee in her nursing home all alone
living life but has a painful slowly death
can’t even remember her name
on top of her lungs
screaming! screaming! screaming!
yelling! yelling! yelling!
to her nurses
what’s my name!
tell me! tell me! tell me!
Lee’s nurses are too busy to where lee is being ignored
lee is getting furiated, frustrated, annoyed all at once
yelling on top of her lungs
can someone tell me what my name is!
demanding to any nurse that is coming by or any nurse that is watching over her
still getting ignored so Lee can’t take it anymore
to where her brain exploded just like a bomb that had just gone off
out of nowhere you heard this aftershock noise of her brain deteriorating
boom! boom! boom! like a timer has gone off
soon after a while Lee just calms down but forgets about
Lee is just calling it quits because she feels that she is
invisible so she is feeling lonely but just doing her own thing
family is visiting lee at her nursing home
she is repeating to everyone who are you people
get out! get out! get out!
you are strangers to me leave me alone
go away! go away! go away!
she does not even take a moment to see that we are family trying to be there for her
she is just gone Lee can’t remember anything anymore
that was the very last time that I saw her
until one day she vanished out of nowhere
passed away didn’t even have a chance to say goodbye
then my heart started to drop
then I was crying non-stop
to where tears were building up like a big puddle of water
just had a moment of silence
moved on like nothing happened
Contributed by Spencer Ginyard.
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.