Question:
Female, 23 years old, UPD subtype
My 23-year-old daughter with UPD is just now developing some food-foraging behaviors. I am assuming this is not uncommon, but I am just wondering if this is typical to start at this age. We have never locked our cabinets because we never had to, so I am wondering if this is the direction we are headed. Thank you so much.
Nurse Lynn’s Response:
Food-seeking/foraging behaviors are indeed common in individuals with Prader-Willi Syndrome and can emerge at different stages of life, including adulthood. While many people with PWS begin to show these behaviors during adolescence, it’s not uncommon for them to appear later, especially as they navigate different life changes.
The onset of these food-seeking/foraging behaviors can sometimes be influenced by factors such as hormonal changes, stress, or shifts in daily routines—whether at home or in other environments. It’s perfectly normal for families to adjust to these behaviors over time, and as you mentioned, some people may not initially need to secure food, but as the behaviors become more pronounced, increased precautions can be necessary.
I would start by having an open, understanding conversation with your daughter about this change. You can work together to create a food security plan that feels supportive and nonjudgmental. This plan could include locking the refrigerator, other food storage areas or having cameras. There are loads of different options for food security. By doing so, you can ensure that she feels involved in the process and that any adjustments made are in the best interest of everyone’s well-being.
Resources:
https://www.pwsausa.org/resources-food-security/
https://www.pwsausa.org/wp-content/uploads/2021/01/Food-Security-Locks-and-Alarms-ED-20.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.