Dietary Management in PWS - the absurdity of it all!

By MH

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

A kitchen with no food in it...

By MH

When we were young and beautiful (kind of) my husband and I acquired a site in the city where we lived.  We then embarked on an 18-month collaborative adventure with a team of architects, engineers and builders with the aim of creating the house that would become our home.  Shortly after becoming pregnant with my first child (who was later diagnosed with PWS), my husband and I moved into this new house.  

As is the norm where we live, the kitchen was central to the design and intended as the primary communal living space.  Just as the kitchen was designed to be central to the house, food was envisaged as central to the kitchen. So, a large open larder along one wall was intended to provide both easy access to food and a means of displaying food.  

Obviously, we would planned our home differently had we known that our son was going to be born with PWS!

For nearly 10 years since our son's birth we have (largely unquestioningly) accepted the vision that inspired the original design.  The kitchen is occupied more than any other room.  We have used the open larder for food storage.  We have left a bowl of fruit permanently on the windowsill.  We have entered the house through the back door, which leads into the kitchen.   While we have had to exercise some caution (e.g. we don't leave our son in the kitchen on his own) we have largely used the house as we would have had our son not received a diagnosis of PWS.  

Over the recent holidays I finally began to change things by removing all food from the kitchen.  Where did I put it?  Fortunately, the architects had included a small utility room near to the kitchen.  Designed to hold ugly but useful items it has become our new food storage area.  It's isn't large enough to accommodate the fridge and isn't ideal for other reasons, but it works reasonably well.

The open larder and erstwhile food storage spaces in the kitchen are also more than capable of accommodating what has been taken from the utility room.  So there are hammers and screwdrivers in place of cereal, and weighing scales and a first aid kit in the place of tinned food.  It looks ugly, and probably bears no resemblance to what the architect had in mind, but it works better for us.

Did I enjoy reorganising my kitchen?  Not particularly, it just felt like another chore.  However, in the course of my morning's work I reached two conclusions:

1. My family has been far too willing to conform to existing norms and infrastructures that clearly don't suit our lives.  Just as the cultural norm of a food-filled kitchen acting as the focal point of a home does not have to be endured, there are also many other norms and practices that we can and probably should resist. 
2. I have completely accepted PWS. I don't resent having to have a kitchen with no food in it.  I don't resent the fact that my life is (in many ways) different to the life I dreamed of as I planned my house.  I don't feel sorry for my son, my other family members or myself because of his diagnosis. Our life is different to what we expected and PWS is one big reason why, but that's fine.

Incidentally, around the time of my kitchen reorganisation I explained the concept of New Year's Resolutions to my son.  When he appeared not to understand my initial explanation I asked him if there was anything he didn't like about his life in 2013 that he would like to change in 2014.  He was very clear that he didn't want to change anything.  While this could be interpreted as an absence of creative thinking on his part, or an unhealthy obsession with sameness and routine, personally I choose to interpret it as a sign that he's happy with his life too! 

Happy New Year!