contributed by Dorothea Lantz, mom to Hunter (living with PWS)
When Hunter was diagnosed with Prader-Willi syndrome as a baby, my world shifted overnight. Like so many parents in this community, I suddenly found myself learning a whole new language—growth hormone, hypotonia, food security, behavioral supports, specialists, therapies. I was trying to understand what life might look like for my little boy and how I could give him every opportunity to thrive.
But as Hunter grew, I started to notice that his journey didn’t quite look like that of many other kids with PWS.
There were signs that something more was going on, especially around communication. While other children with PWS were developing some words or ways to express themselves, Hunter was struggling in ways that felt deeper and harder to define. Shortly after his 2nd birthday, he was also diagnosed with Autism Spectrum Disorder (ASD).
For us, that second diagnosis didn’t replace the first—it layered on top of it.
Hunter is truly non-verbal. Not just “a little delayed” or “using a few words.” Communication is one of the biggest challenges he faces every single day. And for those who haven’t lived it, it’s hard to explain what that really means.
Hunter struggles with both expressive and receptive language. That means not only is it incredibly difficult for him to tell us what he wants, needs, or feels—but it can also be hard for him to consistently understand what we are saying to him.
Imagine wanting to tell someone you’re scared, frustrated, excited, or uncomfortable… and not having the words. Imagine people talking to you and only catching pieces of what they mean. That is the space Hunter lives in every day.
As his mom, I spend a lot of time trying to interpret the world through his eyes. Sometimes communication looks like a gesture, a glance, or a behavior that we’ve learned over time means something very specific. Sometimes it’s trial and error. Sometimes it’s guessing.
And sometimes we still get it wrong.
Having both PWS and autism creates a unique set of challenges that doesn’t always fit neatly into either diagnosis. PWS brings its own cognitive profile, emotional regulation challenges, and need for structure and routine. Autism adds another layer of complexity around communication, sensory processing, and social interaction.
Together, they create a reality that can be difficult for systems—and sometimes even professionals—to fully understand.
We’ve experienced this first-hand in Florida when seeking services and support. Many state programs rely on scoring systems to determine eligibility and the level of care someone receives. On paper, these systems are meant to quantify need.
But Hunter’s life doesn’t fit neatly into a scoring rubric.
Forms can capture “pieces” of who he is, but they rarely capture the full picture. They don’t show what it means to raise a child who cannot reliably tell you when something hurts. They don’t show the constant work of helping him navigate a world that expects communication in ways that simply aren’t accessible to him.
Trying to explain Hunter’s needs within those systems can feel overwhelming. Not because his needs aren’t real—but because the system wasn’t designed to easily recognize the complexity of a child living with both PWS and autism.
And yet, despite all of this, Hunter continues to amaze me every single day.
He experiences the world in ways that are deeply genuine. His joy is big. His determination is bigger. When he connects with you—through a smile, a look, or a moment of shared understanding—it is powerful in a way that words could never fully capture.
Communication may look different for Hunter, but it absolutely exists.
For those of us raising children with PWS, we already know that our kids don’t fit neatly into boxes. For families navigating both PWS and autism, that reality can feel even more complicated. But it also reminds us that our children are not defined by a diagnosis, a score, or a system designed to categorize them.
They are defined by who they are.
Hunter may not use words to tell me who he is, but every day he shows me.
And I will keep advocating until the systems around him learn to see him fully too.
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.