Adapting Daily Routines: Living with Prader Willi Syndrome

|There are those moments that irrevocably change our perspectives on life. Hearing and really understanding—that your child has a genetic disorder like Prader Willi Syndrome (PWS) is one such moment. But what does this mean for the daily life of an affected individual and their family? How can daily routines be successfully adapted to accommodate these challenges?

We want to focus on the lives of people with Prader Willi Syndrome and introduce the principles for a balanced, comfortable day. Specifically, readers will understand the what, why and how of PWS, and learn about strategies of how to arrange the environment in a way that the Prader-Willi Syndrome individual will find appealing.

​Please note: This guest article does not contain healthcare, therapeutic or financial advice. If you are concerned about your health or well-being, speak with a health professional or visit your nearest medical facility in an emergency. The links in this article may be affiliate links that I will be compensated for at no additional cost to  you.

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Understanding Prader Willi Syndrome

First thing's first, it's crucial to truly comprehend the complexity Prader Willi Syndrome presents before endeavouring to adapt daily routines to best suit these needs. Characterised by a perpetual sense of hunger combined with a slow metabolism, this syndrome presents a unique set of challenges. Also, with the syndrome, there may be developmental issues, learning disabilities, and certain behavioural problems.

In the early years, providing a safe, nurturing environment that fosters learning is essential. As the child grows, routines become more vital, promoting predictability and consistency in their lives. By carefully structuring days around functional activities, skills, and balanced eating, we can establish a nurturing environment encouraging positive growth amidst the challenges.

The Importance of Routine

Routine plays a pivotal role in managing Prader Willi Syndrome. Lack of structure can exacerbate feelings of anxiety, leading to behavioural issues. Routine offers a sense of safety and predictability for individuals with PWS. But why exactly is this?
The key is understanding that Prader-Willi Syndrome individuals often struggle with change. An unanticipated alteration in their daily routine can trigger anxiety and challenging behaviours. Therefore, building a sturdy routine structure can serve as an emotional safety net, reducing anxiety and creating a sense of stability.

Constructing an Effective Routine

When structuring a routine for an individual with Prader Willi Syndrome, it's critical to consider the needs that arise with this syndrome. You're essentially creating a daily roadmap, so it’s important to ensure it’s easy to follow.
Firstly, take the fundamentals like breakfast, lunch, dinner, and bedtimes- established at consistent times. Secondly, incorporate time for physical activities, cognitive development exercises, play-time, and relaxation. Additionally, it's important to note that the predictability of meal times is crucial for PWS individuals, as it helps reduce their food-related anxiety.

The Proactive Environment: Maximizing Potential

Complementing routine with a proactive environment is a game-changer. By optimizing the living space, you can further drive routine and facilitate smooth transitions through the day. Consider thoughtful furniture placement, colour schemes that promote calm, and strategic storage solutions for belongings. A well-curated environment not only supports routine and reduces potential triggers but also allows the individual to make the most of their abilities.

Assessing and Adjusting

No routine is set in stone. With Prader Willi Syndrome, the key is closely monitoring progression and adapting as needed. Growing children, hormonal changes, and life events may require modification of routine, which is completely okay. Remember, the goal isn’t to create a stringent schedule, but a fluid guide that brings stability, predictability, and growth opportunity to the individual’s day-to-day life.

Conclusion

Living with Prader Willi Syndrome undoubtedly presents a unique, often challenging, journey. The key to navigating this journey lies in understanding, patience, carefully constructed routines, and a supportive environment. While the road may seem daunting, remember that the objective isn't perfection, but a loving, adaptive approach focused on maximising potential, growth, and overall well-being. This journey isn't about settling for less—it's about embracing a unique rhythm of life that celebrates the individual, cherishes their attributes, and empowers each day.

Related: ​The Benefits of Gardening for your Mental Health

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