submitted by Winnie White, mom to Sandy Kay (11, living with PWS and Autism)
Autism is not new to our family. My son, now 21, was diagnosed with autism at the age of three. We navigated early intervention services, and by age five he was successfully mainstreamed into kindergarten. While he continues to experience challenges with social interaction, anxiety, and ADHD as a college senior, his greatest ongoing difficulty lies in executive functioning.
When my daughter, Sandy Kay—who has Prader-Willi Syndrome (PWS)—was also diagnosed with autism at age three, I initially approached it with confidence, thinking, “We’ve done this before.” However, this journey has proven to be significantly different and more complex.
My son has Level 1 autism, while Sandy Kay has Level 3 autism. He was fully verbal by kindergarten and required speech services only for stuttering. In contrast, at 11 years old, Sandy Kay is nonspeaking. She communicates using an AAC (augmentative and alternative communication) device and receives speech therapy twice weekly. Additionally, while my son did not exhibit aggressive behaviors, Sandy Kay can become aggressive when she is tired, hungry, or frustrated.
With PWS, persistent hunger and fatigue are common, which often contribute to frustration. This has made our journey more challenging. As an educator, I sought to deepen my understanding when my son was diagnosed in 2007 by adding a special education certification to my teaching license. This decision not only helped me better support him but also led to the development of a special education program at our local Christian K–12 school. Alongside a highly experienced colleague, we created an inclusive environment for students like Sandy Kay within our school community.
This work has required significant professional growth. I have had to implement food security measures in the classroom and develop strategies for teaching nonspeaking students to communicate functionally while also supporting their academic, social, emotional, physical, and spiritual development.
Sandy Kay currently receives a comprehensive range of supports designed to enhance her quality of life. She participates in speech therapy, physical therapy, and ABA therapy, and she also benefits from the companionship of an autism service dog. These interventions work together to help her regulate her emotions and behaviors as she navigates the daily challenges associated with PWS and autism.
Both PWS and autism present unique and significant challenges, and each plays a role in Sandy Kay’s daily life. At times, autism is more prominent; at other times, PWS takes precedence. Yet, after 11 years of learning her needs, we have built a strong and joyful relationship. We learn, worship, and travel together, creating meaningful experiences—including unforgettable trips to places like Alaska and Hawaii.
As an older parent, I am intentional about building a strong support system that will continue to love and advocate for Sandy Kay. She is truly remarkable and has profoundly shaped my life. I am hopeful as I watch her grow in her ability to communicate through her AAC device. My dream is that she will one day use it fluently to share her voice and her story with the world.
I am also deeply grateful for the dedicated doctors and therapists who support her. Over the past eight months, she has been taking Vykat XR, and we have already seen meaningful progress. We remain hopeful for continued growth in the months ahead.
Prader-Willi Syndrome and autism each bring distinct challenges, but they do not define the entirety of our experience. Life is still beautiful—and Sandy Kay is thriving.
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.