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!

Close all the Windows on Leaving the Building

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. 

http://www.dreamstime.com/windows-free-stock-photo-imagefree55405

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!