Contributed by Patrice Carroll, LICSW, Director of PWS Services at Latham Centers
When people hear the word caregiver, they often picture someone gently holding a hand, offering a kind smile, maybe helping with medication or a wheelchair.
That is part of the job.
It is also the smallest part.
Being a staff caregiver for people with Prader-Willi Syndrome is not a soft-focus inspirational poster. It is not a feel-good movie montage. It is a daily, complicated, sometimes exhausting, always meaningful mix of science, strategy, patience, humor, and heart.
You do not need a cape for this job.
You need stamina.
You need to be the kind of person who can calmly say no for the 47th time before breakfast and still keep your voice kind.
You need to be able to plan meals like a military operation, count calories like an accountant, and guard a pantry like a secret service agent.
You need to notice everything. A small change in mood. A slightly red cheek. A missing snack wrapper. A look in someone’s eyes that tells you today might be harder than yesterday.
You need to be part detective, part nurse, part teacher, part comedian, and part bouncer.
Most of all, you need to be steady.
People with PWS live in bodies and brains that send them confusing messages every single day. Hunger that never shuts off. Anxiety that can feel enormous. Emotions that sometimes come out sideways.
So, the job of a caregiver is not just to provide care.
It is to provide calm.
It is to be the person who holds the structure so tightly and kindly that someone else can finally relax.
That takes character.
It takes self-control to stay calm when someone else is not calm.
It takes humility to apologize when you get it wrong.
It takes creativity to solve the same problem in 20 different ways.
It takes teamwork to get through long days and unpredictable moments.
And it takes humor. A lot of humor.
If you cannot laugh, you will not last.
But here is the part people do not talk about enough.
Yes, caregivers give a lot.
But people with PWS give just as much back.
They teach you to be patient in ways you never imagined.
They teach you to celebrate tiny victories like they are Super Bowl wins.
They teach you to communicate more clearly.
They teach you to slow down.
They teach you to notice the small joys in an ordinary day.
You learn to become a better version of yourself because they need you to be.
You learn that consistency is love.
You learn that boundaries are kindness.
You learn that fairness sometimes means doing things differently for different people.
And you learn that real connection does not require perfection. It requires showing up.
On the hardest days, caregivers wonder if they are making any difference at all.
On the good days, they know without a doubt that they are.
The truth is that this work changes you. It stretches you. It humbles you. It makes you tired in your bones and proud in your soul.
Professional caregivers are not saints.
They are regular people who choose, over and over again, to do a very hard job with compassion.
And the greatest secret of this field is this.
If you stay long enough, the people you care for end up caring for you right back.
So, on National Caregivers Day, skip the clichés. Skip the capes.
Just thank the staff who show up early, stay late, lock the snacks, wipe the tears, hold the boundaries, and keep trying again tomorrow.
They are not superheroes.
They are something better.
They are pillars, built of patience, structure, and heart.
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.