Blog by MH
I recently visited a hospital administration unit that was located in a small prefabricated building. On heading towards the building's exit I noticed a handwritten sign affixed to the outer door that stated "Close all windows on leaving the building". My reflex was to block the door and distract my son (who has PWS) to ensure that he did not notice the sign.
What was I afraid of? Put simply, I was afraid that he would want to close the windows. I was afraid that he would find it difficult to accept my assertion that the sign was really only intended for staff in the building. I was afraid that he would ask me how I knew that the sign was only intended for staff when this was not stated anywhere. I anticipated my son suggesting that we return to the reception of the building to clarify if we were required to close the windows. I anticipated, if not a full-blown meltdown, certainly an increase in anxiety that would in turn increase the likelihood of upset later in the day.
Why did I think this sign would cause a problem for my son? Because, like many with PWS, and indeed many people without PWS, my son finds it difficult to understand messages and concepts that stray beyond the realm of the literal. I believe that my son craves to understand the world but finds it hard to grasp things that are not black and white. The many social norms and unspoken rules on which the world relies largely remain a mystery to him, despite his valiant attempts (through repeated questioning and efforts to pin down uncertainties) to really understand. Dealing with my son's frustration with the fuzziness of how the world operates is a challenge. However, I sympathise with people in his position who are expected to operate in a world where those of us who (seemingly effortlessly) understand cannot adequately explain how the world works to those who don't.
So, my body responded swiftly in response to my genuine concern about how my son might react with the noble aim of circumventing a problem. But what did my son actually say? Nothing, in fact. Instead, when I hastily and awkwardly manoeuvred my body to block the sign and turned around to distract my son, I saw only a slightly startled-looking middle-aged man. My son, as it happened, was not even with me that day. Just as his anxiety so often leads to him trying to control the environment in a way that is neither possible nor productive, on this occasion so too had mine!