I recently had the great pleasure of interviewing a group of parents about dietary management in PWS. The interviews were recorded for a training film and were designed to find out the practical actions that parents take to manage food.
The commonalities in both problems faced and management strategies applied were striking. One speaker after another spoke of stress being caused by peas rolling off plates and the need to have replacement peas close at hand! Surprisingly to me, grandmothers came in for particular and consistent criticism for giving inappropriate food to people with PWS.
Many parents, I am delighted to say, were able to laugh at the absurdity of it all.
Of course, this all led to me reflect on what I (a parent of a son with PWS) do and, in particular, led me to think about some of the odd things that I could never have imagined when I first heard of PWS.
For example ...
My son refuses to use a knife. I'm pretty sure it's because he knows that he is not allowed to put his knife in his mouth and is terrified at the prospect of some food sticking to his knife that he will then not be able to eat. So, I either cut his food for him (which he doesn't like as he considers himself too old) or he laboriously attempts to cut it himself using the side of his fork.
I increasingly find myself not finishing the food on my plate until my son has finished his own meal. Why? It's in case some mishap occurs to an item of food on his plate that I then need to have a immediate replacement for. Most of the time I'm not even conscious of doing this.
I "sneak" food. When I find myself hiding in my utility room (which isn't visible from any other part of the house) eating a piece of fruit, I usually don't find anything odd about my behaviour. But every now and again, I am reminded that this is all slightly RIDICULOUS.
I have concluded that I cannot give my son a full apple, not even a very small one. Why? Because he invariably eats the core and then becomes upset. I know that he doesn't intend to eat the core, but worries so much that he may leave an uneaten piece of apple behind that inevitably he swallows everything and then starts to worry.
I regularly find myself having to call my son repeatedly when his meals are ready. I assumed that my son's interest in food would rapidly propel him to the table for each and every meal, but no, this is not what happens. Rather, if he is in the middle of another activity his desire to finish the activity is usually greater than his desire to come to the table. As a result, at least every other day I find myself repeatedly calling him while the rest of the family sit waiting. This was not what I expected PWS to look like.
I regularly lie about food. In fact, lying is probably one of the strategies I employ most frequently in dealing with dietary management in PWS. So, if my son asks (for the 3rd time!), if I checked the expiry date on his yoghurt, I will lie and claim that I did. If he asks what I have been doing in the utility room, I will, without any guilt, invent a story that has nothing to do with food.
I felt privileged to have an opportunity to listen to other parents talking about how they manage food. Hearing what they did made the absurdity of it all even more obvious to me. It also made me feel proud to be part of a group of people who have found ways to cope with what is a supremely difficult task and, sometimes, even manage to laugh about it.
I always remember a mother of an adult son with PW being called out of the house by her neighbour just as the roast dinner was ready. She hid the full roasting pan in her husband's wardrobe... Editor