Prader-Willi Syndrome: Secure and Free in Lock Up

The question of whether or not to lock up the kitchen is a question all those caring for a loved one with Prader-Willi Syndrome (PWS) will eventually encounter. We are well aware of the problems associated with the hyperphagia that comes with PWS. Left unsupervised, individuals with PWS can eat until their stomachs rupture. As a result, their access to food must be restricted.

For many families, this means installing locks. However, while we all want to protect our loved ones, putting in certain safeguards can be easier said than done. We often struggle with finding the right time and the best way to lock up. 

When we first dabbled with the idea of locking up our kitchen, our daughter had not yet begun food seeking. I knew if we locked the pantry and refrigerator, there would be questions. Why were we locking everything up? Why were her siblings allowed to open the locks? Didn’t we trust her?

Answering these questions honestly, would unavoidably introduce her to the idea of food seeking. I worried about instigating a problem we didn’t have yet. A problem, I was hoping to avoid for as long as possible.

I also dreaded the inconvenience of the locks themselves, and the frustration they would inevitably cause.   

The time did come when our daughter began to jump on opportunities to sneak food. At first, she took scraps from dishes in the sink, but soon she became bolder. One day, she snuck food out of the refrigerator. Luckily, with our busy household, her window of opportunity was short and she wasn’t able to eat much. The incident was enough though to end the debate of whether or not to lock up.

We installed locks on our refrigerator, pantry, freezers and garbage. We felt confident that would keep her safe. However, she managed to sneak into her siblings’ rooms and help herself to hidden candy and gum. So, we installed locks on bedroom doors as well.

Over the years, we have had to add locks to certain cabinets too. We are up to fifteen locks in total now. Yes, they are inconvenient and restricting. Yes, they are harder to open when I am in a hurry and I often find myself fumbling with them. And yes, they have prompted many awkward conversations with guests.

Oddly though, they have also provided some freedom.

For our daughter, the locks have freed her mind from seeking opportunities to get food. She knows it is all locked up and no such opportunities exist. This has alleviated some of the anxiety that dominates her psyche.

For us, the locks have freed us from worrying that she will find an opportunity to seek food. We don’t feel the need to have eyes on her at all times. I can be in a different part of the house and know she doesn’t have access to food. We have even felt secure enough to leave her home alone for brief periods of time.  

As inconvenient and frustrating as they are at times, the locks have provided us an unexpected freedom. And, that is hard to come by in the world of PWS.