Question:
Female, 11 years old, UPD subtype
My daughter deals with some measure of skin picking, but it has improved over time and it’s the least of our battles to fight or worry about at this moment. I need help knowing how to talk about this behavior with the other adults in her life, as they are so distressed by it, I get calls from school all the time about her inability to stop and that it’s making her skin bleed. I completely understand how this seems so urgent on their end, but they seemed shocked when I reassure them it’s nothing new, as long as the bleeding is under control and she’s not in pain, the best thing to do is to use bandaids and provide distractions (that we also provide for them) and she will stop when she gets busy with something else. They seem horrified that I’m so casual about it.
Nurse Lynn’s response:
When talking with other adults about your daughter’s skin-picking, it helps to keep the explanation simple, calm, and based on best practices. Skin-picking is a well-recognized behavior in Prader-Willi syndrome and other developmental conditions. While it can look alarming when the skin bleeds, it is usually not an emergency unless the bleeding is heavy, doesn’t stop with pressure, or there are signs of infection like redness, swelling, or pus. The best current approach is to treat the spot quickly and neutrally — wash with soap and water or an antiseptic wipe, apply a bandage, and move on without giving the behavior extra attention. After care, offering a distraction such as a fidget, drawing, or another engaging task helps redirect her focus. Research shows that staying calm and consistent prevents the behavior from being reinforced by big emotional reactions.
Adults who are new to this often feel shocked, but your reassurance that this is a chronic behavior with a known management plan is important. The goal is not to eliminate every instance right away, but to keep the skin safe, reduce infection risk, and gradually teach replacement strategies. If the school or other caregivers know the clear steps to follow — quick first aid, distraction, documentation, and escalation only when medically needed — they will feel more confident and your daughter will receive consistent, supportive care.
Resources:
https://www.pwsausa.org/wp-content/uploads/2023/01/Skin-Picking-2022-1.pdf
https://www.pwsausa.org/wp-content/uploads/2022/08/HealthConcernsStudent-revisedAug22.pdf
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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.