Contributed by Christopher Rich, Utah PWS Association
Living with Prader-Willi Syndrome (PWS) presents unique challenges, particularly in managing food-related behaviors. The experiences of families dealing with PWS takes on an extra layer of complexity, because of the significance of food control and security devices in their lives. In the below excerpts, we dive into those experiences of families with PWS individuals and how the implementation of new food control devices have brought about remarkable changes.
1. Camping without Worries
One family recently embarked on a camping adventure, a seemingly simple pleasure that took on a new dimension of freedom for them. With a family member affected by PWS, they shared how the ability to use locking coolers and motion sensors around the food has brought a sense of security. They shared, “We went camping last weekend with the coolers and it was so nice to be able to lock the food away when the 'kitchen is closed' and be able to relax around camp and go hiking without having to leave a 'guard' by the trailer.” The knowledge that their family member is safe, even in outdoor settings, allows them to relax and enjoy life to the fullest.
2. Tracking with Innovative Solutions
For another family, the provision of a specialized tracking device, such as a Gabb Watch or Apple Watch, has proven to be a game-changer. These device’s not only track physical activity but also provides peace of mind of knowing where your PWS individual is at all times. One family shared, “I figured out she’s been just sitting at one of their houses for hours and hours and watching tv because of the Apple Watch that was provided to us.” This device allowed them to discover neglectful behavior and take swift action. The tracking device empowered them to make informed decisions about their loved one's care.
3. A Safe Haven at Home
The sentiment of "everything is locked up until I leave my house" encapsulates the essence of creating a safe environment for loved ones with PWS. Implementing food security measures has brought a sense of normalcy and routine to their lives. One family that has introduced security cameras to their kitchen shared what their individual with PWS expressed to them about his urges to steal food. He says, "They're better because you are watching.” He has lost 25 pounds since the introduction of cameras to the kitchen. Another family shared, “One of many things we can say is we feel more calm knowing our son won't access the fridge.” For those living with PWS, these measures translate to a sense of autonomy and security, significantly enhancing their overall well-being.
4. Calm Amidst Concerns
One parent succinctly encapsulates the overarching sentiment among these families and says, “There is this peace of mind that comes with controlling access to food. It contributes not only to the individual's physical health but also to the emotional stability of the entire family.” This sense of calm allows families to focus on quality time together, rather than constant worries over leaving the fridge unlocked or the pantry door open.
5. Savoring Sweet Moments
In another family's story, the importance of food control devices shines through when loved ones visit. They shared, “My sister and her four small kids came to stay with us for 2 weeks this summer. What a difference it made to have a lock on their room door. We didn’t have to worry and fret about our PWS individual sneaking in to rummage through her things to look for all the yummy chocolate in her suitcases and kids’ snacks in their beach bags.” Implementing a lock on certain areas brought about a transformative shift. With worries about access to food eliminated, the family could truly relish their time together.
These stories are a testament to the profound impact that food security and control devices have on families with Prader-Willi syndrome individuals. Beyond addressing practical concerns, these innovations provide an intangible gift: the ability to create safe and nurturing environments where individuals with PWS can thrive. If you are interested in adding any of these or different food control devices to your home please scan the QR code below.
If you have any questions please email: christopherrich@upwsa.org
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.
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.
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.
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.
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.