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Our FPWR UK Full Story – Entry 2

In our second FPWR UK Full Story submission we hear of how the behavioural side of PWS affects W, and strategies that help. It’s really important to see how behaviour affects people differently across the PWS spectrum, as like with any of the LONG list of PWS symptoms the behavioural and emotional aspects of PWS can manifest in different ways and at different levels from nothing to mild to moderate to severe. 

Thank you to W’s parents for sharing their ‘FPWR UK Full Story’. 

W is 7 years old and is a funny, happy, loving and pretty chilled out little boy. He doesn’t display many of the typical behaviours associated with PWS.  He has glowing school reports, being graded ‘excellent’ for behaviour, and was described as a popular pupil and a great role model in his most recent report.  

Of course, this doesn’t mean that we never experience meltdowns, but they usually have an identifiable cause, and can mostly be avoided before they really begin by either distraction or identifying and talking through the problem which helps to calm him. We identify and acknowledge feelings and we’ve found a strategy of counting to 10 and taking deep breaths is very helpful for regulating when emotions do start to get a bit too big (this is usually when he is disappointed by something or when something he loves is coming to an end). A meltdown for W is throwing his head back and uncontrollably crying.  He doesn’t lash out, and he likes to be given a big cuddle during (if possible) and after. When he self-regulates with counting, we always give him lots of praise which helps him move on and not spiral back into the meltdown. 

W does thrive with routine but will usually break his routine fairly easily if the new plan is clearly explained. W doesn’t skin pick or display other destructive signs of anxiety but does use chewie’s a lot to help him regulate and anxiety does increase if he’s not fully aware of or understand a change of plan.  

W has never been violent, and although he likes certain topics more than others, he doesn’t display perseveration. Stubbornness is a trait he possesses but this doesn’t seem to be at a level that is untypical for his age and generally doesn’t impact on day-to-day life!