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!

I want to go home now

Once upon a time I never thought I'd hear those words without assuming it meant back home to our house.  They were often said, and most frequently when everyone else was enjoying themselves on a long-planned outing, usually to the beach.

"I want to go home", my daughter would say.  "I'm too hot" or "I'm too tired", or anything that seemed designed to interrupt an otherwise pleasant day.  And so it was that outings became truncated, or even avoided and often my husband would take the older siblings on their own holiday - tramping, or skiing, or out to the beach - while I would stay behind with our youngest, thus avoiding having holidays cut short, or "ruined" (according to her sisters).

Separate holidays in our household became the norm, with me taking the youngest off somewhere for a couple of days special time together (often dropping in on other parents who had a child with PWS), and the older ones having some Dad-bonding time.  It worked rather well - no arguments, no fighting, no locking food away and losing the keys - in fact it's something we still do years later (yes, and we still lose the keys...).  We have the celebratory holidays together: Christmas, Easter, birthdays,  but I've noticed that the youngest daughter (now 29) really struggles with anything over 5 days.  Why?  Well, I think it's because she now has her own home, with her own things around her, her own cat, and staff who genuinely like being with her and don't mind repetitive conversations, lengthy window-shopping excursions, or just hanging out with her.  For sure they have 'off' days when arguments become heated and rules are broken, but she would still prefer to live her own life, visiting our home when she wants to.

It's such a relief to know this is her choice and it's something she is completely happy with.  It's been the best residential option so far and, as she has matured, it seems to have become happier.  The staff are very open with her, and with us, but I no longer jump at the ring of the telephone thinking it will be some crisis I have to deal with.  Best of all, she's lost 10kg this year.  She enjoyed her Christmas, was happy to see her small nephew and niece, was happy with her presents (and the promise of a holiday later in the year), but after 5 days when she said, "I want to go home now", I knew it was not to ruin things, but merely a choice she could happily make.

Skepticism and Ignorance

Blog by MH

I have a confession to make, and this might be seen as a long moan about PWS and food, but....  my son (who has PWS and is 9) is thin.  In fact, he is not just thin, he is very thin.  The descriptors scrawny, slight and spindly all seem appropriate.  And that's with his back brace on.   With it off he looks even more fragile.  Most of the time I think my son looks like he needs a good meal.  If asked, no doubt he would agree!

I say this neither as a boast nor to suggest that my family has somehow mastered weight management in PWS.  My son, after all, is only 9, and I do not assume that his weight will always stay like this.  But, right now, he bears no resemblance to the overweight children with PWS whose images I was introduced to when he was diagnosed.

One might think that my son's weight (low, but appropriate for his height) would be a cause for celebration.  And, certainly, I am happy that he is not carrying excess weight.  But I have concluded that being thin with PWS also causes problems.

 

For a start, it's very hard to convince non-professionals to take hyperphagia, the threat of obesity or even stomach necrosis seriously when the only person with PWS they have ever encountered appears as my son does.  I routinely encounter extreme skepticism when I explain that my son must have less food than others, cannot have any junk food whatsoever, and cannot be granted unrestricted access to food lest he binge.  When, on rare occasions, we eat in restaurants and I begin by removing half the food from my son's child's portion I fully expect to encounter raised eyebrows.  More worryingly, I suspect that even some family members don't fully believe my assertions about the need for such a strict food regime, despite my having repeated the message at every available opportunity.

In addition, and ironically, the manifestations of hyperphagia that are visible are often attributed to the restrictive diet imposed by Mom and Dad, rather than seen as evidence of hyperphagia itself.  So, when my son scrapes his fork off his plate 30 times after every meal to ensure that he hasn't missed anything or demands an extra pea because one has escaped from his plate, this is interpreted (along with his skinny stature) as evidence that he isn't getting enough to eat.  

Not being believed doesn't particularly bother me on a personal level ...I know enough to know that managing my son's food is the right thing to do.  But it bothers me because if people don't accept the reality of hyperphagia and the need for calorie control then I can't allow them to mind my son.  So, for the most part, he can't attend groups or parties or stay with family members without me or his father shadowing him all the time.  It bothers me too, because if I am not believed in relation to these issues regarding my son's care then I might not be believed in relation to other issues regarding his care either. 

Whereas, in my experience, non-professionals find it hard to believe in hyperphagia and the threat of obesity, I also fear that many professionals can't see beyond them.  I recall one such doctor cheerfully welcoming my son into his clinic by saying "I don't even need to ask how you are, I can see just by looking at you".  Excuse me! What about his skin-picking, perseveration, anxiety attacks, sleep apnoea, low muscle tone and scoliosis?  Do none of these matter as long as he is thin?

The reduction of PWS to one element bothers me too because I need professionals to support my son in relation to all his needs.  If hyperphagia and obesity are seen as the key problems associated with PWS and these appear under control, then that offers a rationale for service providers to start denying services.  

The saying, "a little knowledge is a dangerous thing" seems very apt to me when it comes to many of the professionals my son meets.  No knowledge at all, coupled with skepticism towards my explanation of PWS, on the part of non-professionals is equally worrisome.  However, I have concluded that the biggest problem is neither skepticism nor ignorance of the range of PWS issues, but an unwillingness to learn that might be - just might - due to plain old laziness.  The truth, of course, is that PWS is complex and if people with PWS and their families are to be really supported, then we need both professionals and non-professionals to accept this and, ideally, educate themselves about PWS.  Or, if that is too much to ask, at least believe the stories we tell about PWS and how to manage it.

Sorry, but I did warn you that this was a moan!

Welcome back to my life, Fairy Tales!

By MH

My son (who has PWS) has always loved books - slightly embarrassingly, his first intelligible word was "bookie".  So it's probably not surprising that there are a lot of children's books in our house.  Part of this abundance is due to the fact that grandparents and other family members were "trained" not to give food treats to my son and so typically arrived with a book in hand instead.  And, unlike the food treats that they may have given to others, these items have lasted.

This is lucky for my daughter who is now making good use of her big brother's library.  But I recently noticed that we have very few traditional fairy tales or fables.  I wasn't quite sure why this was initially.  And then I remembered ...

The traditional tales of the type that I grew up with simply had too many unhelpful messages about food in them.  And, being super cautious new parents of a baby with PWS, we had decided to take no chances.  So, we banned any books that contained references to eating on impulse, eating to celebrate, or eating as a reward.  Given that most references to food in children's books seemed to fall into one of these categories, to simplify matters I told my family and friends not to buy any books that contained any references to eating or food whatsoever.  That included a lot of fairy tales and fables!  On reflection it's amazing that we managed to fill a bookshelf for our son at all.  It's also amazing that our family members persevered with bringing him books given that they had to carefully scrutinise every page of every book in advance of purchase to comply with our exacting requirements.

Now that my son is older and accustomed to a strict food regime I no longer try to shelter him from messages about food in books.    In fact, he and I have recently finished a book with the (very appropriate!) title "Ratburger".   And I have recently started to buy my daughter all the fairy tales and fables that I read as a child.  But, for my own amusement, I have also gone through them to find out what I found objectionable in the first place, which has reminded me (even if I didn't need another reminder) that in my culture unhelpful references to food really are everywhere!

So, here it is, my top 10 popular books to avoid if you don't want your child to exposed to unhelpful references to food or eating:

1. Little Red Riding Hood

2. Hansel and Gretel

3. The Magic Porridge Pot

4. The Gingerbread Man

5. Goldilocks and the Three Bears

6. Chicken Licken

7. Rapunzel

8. The Three Billy Goats Gruff

9. Snow White and the Seven Dwarfs

10. The Town Mouse and the Country Mouse

Incidentally, I've just been Googling to see if I could locate a list of children's books that contain no references to food.  I've found none.  Is it possible that I've just conceived of a topic for a list that someone hasn't already created?!  In case anyone is interested, there are, however, lots of academic articles on representations of food in children's literature and lists of food-inspired children's books!