Written by June Rubin
Linda was the oldest, born in 1951 in New York City. Prader-Willi syndrome wasn’t discovered until 1956. My parents noticed Linda would go to the refrigerator often and that she was a bit short for her age.
We moved to San Diego in 1961. Linda loved playing tennis, swimming, and eating out. She especially loved family birthdays, travel, calendars, cats, dolls, doing artwork and crossword puzzles. She had a flare for fashion. She loved costume jewelry and watches - sometimes wearing five rings on one hand and, at times, at least one or two watches on her wrist.
My brother Harvey and I became her co-conservators in San Diego in 1994. At the group home where Linda lived the meals were cafeteria style, which was disastrous for her. At a height of 4’ 11”, she weighed 278 pounds and was considered “morbidly obese”. Luckily, with the help of Regional Center recommending a one-on-one roommate situation, she was able to lose 100 pounds in three years. A reasonable diet with portion control and walking were key. Linda had a charming personality, great vocabulary, and sense of humor. At times, she charmed friendly strangers to share their french fries or half a sandwich with her.
Linda delighted in her day programs at St. Madeleine Sophie’s Center in El Cajon, California. She was able to swim, work in the garden, and make beautiful art. She was so proud to wear her name tag “Linda Rubin – Artist." She loved getting a paycheck when her artwork sold.
Once a year, we had a RUBIN art show as a fundraiser for St. Madeleine Sophie’s Center at Sophie’s Gallery, that included art by our late mother Donna Rubin, photography by Harvey Rubin and artworks by Linda and me. Linda called these events “art parties."
In October 2021, just two months shy of Linda’s 70th birthday, she passed away. We will miss her adorable laugh, sense of humor, and fun-loving spirit.
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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.
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.
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.
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.
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.