Saturday, 20 September 2014


Soren 'Captain' Kierkegaard (He's a Danish
philosopher, Jim, but not as you know it).
Let’s talk about Danish existentialist philosophers. No, wait, come back!

I saw a lot of slides last weekend. Facts and figures and lists and bullet points from a whole raft of presentations at the Prader-Willi Syndrome Association UK national conference are still buzzing around in my head. 

Like this one: body fat percentages in someone with PWS - even someone whose weight is under control - are 2-3 times higher than in the general population, with body fat accounting for 40-50% of their body weight. (That’s nearly as mind-boggling as the 40-50% of my body weight being entirely made up of Crabbie’s Ginger Beer. Although on second thoughts, the second fact isn’t very mind-boggling at all).

But it was a philosophical slide that made me stop and think the most. It was shared by Dr Susanne Blichfeldt, from Herlev University Hospital, Denmark, a member of the International PWS Organisation Scientific Advisory Board.

It was a summary of something written by Danish author Soren Kierkegaard (whose name, I now know, when correctly pronounced in Danish, sounds exactly like a sneeze).

It’s about helping. And the main thrust of it is this:

To help another person you need to understand more than he does, but first of all, you need to understand what he understands. Otherwise you cannot help. 

In other words, we have to try to put ourselves in their shoes, and to try to see the world through their eyes. If we don’t, we haven’t got a free U2 album’s chance of staying in my iTunes.

And that’s it, really, isn’t it, in a nutshell: understanding. It’s the holy grail for every PWS parent and carer. We want to understand. We have to be aware, to try to learn, and often to second-guess just what our children’s perspective on the world might be - what they see, what they feel, what they experience. 

We have to understand that if they can’t stop thinking about food, then it’s best to keep edible stuff out of sight wherever possible.

We have to understand that if they keep repeating something over and over again, it’s their attempt to get the expected answer and to make the world more predictable. It’s not just to wind us up. At least I bloody well hope not.

And that’s where the next bit of the slide comes in. Dr Blichfeldt summarised a further section of Kierkegaard’s thoughts on helping:

Patience is needed, and you have to accept that sometimes you are wrong. But you have to take care to find a person where they are and begin there.

Here's to finding the there.

Song is Wilco - Misunderstood, from the LP Being There. This is the live version from their brilliant Kicking Television Live In Chicago album. You'll want to thank me for nothing, nothing, nothing, nothing (etc.) at all, for picking this one.

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  1. Here in Denmark we are grateful for Susanne. She has made a world of difference for children with PWS.

  2. She certainly knew her stuff. Sounds like she's done a lot of work for PWS families - and she came across as very nice, too.

  3. And "Here's to the patience".That,along with a sense of humour(or at least ,the ridiculous) will get you far.But the most important tool to navigate the minefield is asking your child .Some adults are more adept-they know better than I do which questions to ask.But it's still useful to ask,as in "you've asked me that same question 10 times now.What did I say? My answer is not going to do you have a different question?"Sometimes you get to the real cause of the persevation.Sometimes your child will be so nonplussed that it gives you a few minutes breathing/thinking space.Sometimes you may attempt to ignore the questions.Doesn't work.Does it? So we come back to patience again .and again (ad infinitum). :-)