Saturday, 27 September 2014


It’s Saturday night, and my joie de vivre has allez-ooped en vacances. 

I have zig zag lines appearing in my peripheral vision, aching ribs, and Special Needs Fatigue.

The main reasons for my symptoms are as follows:
  • I’ve been on my hands and knees for an interminable length of time looking for my daughter’s see-through retainers on a stripy carpet.
  • I collided very heavily with the ground playing rounders last Sunday (once whilst making a spectacular diving catch, and a second time whilst falling over myself on the way to first post) - and six days later it still hurts when I do pretty much anything.
All this, and the only drink in the house is Tesco No Added Sugar Fiery Ginger Beer.

Song is The Holy Modal Rounders - Dame Fortune

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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Sunday, 14 September 2014


I  wrapped my arms around her and squeezed, gently.  A little wave of emotion had drenched her, and she was sobbing, into my chest. To be fair, my chest is large enough to comfortably accommodate several sobbers at once. Anyone’s welcome, I don’t discriminate. 

But I wasn’t concerned. My daughter needed just a minute or two for the wave to subside, for the tide to go out, and for her feelings to dry off. Her emotions had overwhelmed her. A fact that was hardly surprising, considering the weekend she’d had: two nights in a hotel, two days of activities with other PWS children and young adults, two PWS picnic dinners, two evening meals out, a bagful of cuddly toys won on the pub’s ‘grabber' machine, oodles of crafts, a game of bingo, two lots of dance workshops, and an entire weekend buddying up with her Prader-Willi Syndrome Best Friend Forever.

It did subside, quickly, and easily. She was right as rain by the time we drove out of the conference centre gates. Three hours later, after a tactical Maccy D tea stop (grilled chicken salad wrap - 330 calories, and pineapple stick - 37 calories), we were home. Low-fat hot choc slurped, tablet swallowed, teeth cleaned, retainers in, jim jams on, bed.

The packed weekend was the PWSA UK's first national conference for seven years. The event, in Derby, was spread out over two days, concentrating on under 16s yesterday and focusing on over 16s today. The Association subsidised conference fees to try to make it more affordable for parents and carers, although as a charity, its funds are limited. 

I really hope they make it a regular event.

It can be daunting, especially for new parents, to hear some of the tougher topics and scarier stories from professionals, carers, and other mums and dads, even when it's emphasised that symptoms and behaviours can vary wildly from child to child. It can be repetitive, when speakers tell you things you’re already very familiar with. Not every talk turns out to address the issues you were hoping they’d cover. At certain points, you might even begin to understand what a PWS emotional overload might feel like.

But there is always something that resonates. There’s always something that surprises. I found Medical And Dietary Issues advice from a team from a PWS multi-disciplinary clinic (God, how I wish there were more of those) to give me plenty of *ahem* 'food for thought'. PWS BFF’s mum said the Changes to SEN Education And The Law session was hugely useful. I’m sure everyone there took away something; nuggets of information, little treasures, lightbulb moments, ideas, practices, realisations, recognition, revelations. 

And there's always something funny: the mum who went into the adjacent bible conference by mistake, and dashed out pretty sharpish when they started talking about Psalm 24 instead of Chromosome 15; our theory that said bible class (99% female) looked remarkably like the evil WI convention from the film of Roald Dahl's The Witches; and the idea that the catering staff, decked out in old-fashioned black and white uniforms, were actually dinner ladies from the 1950s transported through time to serve us up our gravy. 

As the day came to an end, a few parents and other Prader-Willi teenagers and young adults, walking past us on their way out, noticed my daughter finishing up with her aforementioned 'it'salltoomuchforme' weeping session. One lad picked up her Froggy soft toy, and patted her back. A couple of people caught my eye and smiled back at me when I smiled at them, as my daughter’s tears wet my shirt, and her face continued to crumple and leak. They didn't think me callous for seemingly not looking overly concerned at my distraught child. I knew that they knew that it would pass and be forgotten about as quickly as it had started. They got it. They got her. They got us.

I know I always bang on about it, but I’m more convinced of it with every PWSA event that I attend: being there, being together, seeing so many people sailing the same ocean on the same wonky, wobbly raft as you, is special. Some of them will encounter choppier waters, some calmer. But knowing they’re there, bobbing along beside you, makes a huge difference. We can set off flare guns and chuck each other life-belts if needed. 

Knowledge arms us. We’re a goddamn flotilla.

Song is The Waterboys - Strange Boat

Saturday, 13 September 2014


I am anticipating a good night's sleep. It's my second night at the Alfreton Travelodge, a hotel that thankfully has rooms far nicer than the desolate car park environs, which look the kind of litter-strewn wastelands regularly invaded by hoards of zombies in The Walking Dead. (Put it this way, if Egg from This Life had turned up with a trooper's hat on and told me to bash any approaching people in the head with a blunt instrument, I would not have been fazed).

My daughter is fast asleep next to me. Our girly road trip to the Prader-Willi Syndrome Association UK National Conference is proving as enjoyable and exhausting as I envisaged. 

Today was the first day of the conference, which consisted of a whirlwind of quick chats with old friends and new faces, a small amount of cooing over apple-cheeked babies, and a portion of teary wonder at the sight of an amazing PWS girl talking about her job working with a disability charity. In between were workshops and lectures on research, behaviour, medical and dietary issues, feeelings of guilt along the lines of: "Oh God, I should be doing THIS!", alleviated by feelings of relief along the lines of: "Actually, it's perfectly OK that we're doing THIS!" While all this was going on, my girl was shyly proud of herself for 'helping with the little ones' during the day's programme of events for PWS children. She and her Prader-Willi Syndrome Best Friend Forever (PWS BFF) were honorary volunteers for the day (which as far as I can gather consisted of joining in all the activities whilst wearing an association T-shirt, but hey, they were 'working', OK?).

Co-ordinating adjacent hotel rooms with PWS BFF and family proved to be a minor stroke of genius, as it allowed the two special-peas-in-a-pod teenagers to play Hello Kitty Yahtzee yesterday, and to watch Eastenders on the iPlayer tonight. And beam at eachother.

Two observations about Eastenders: 
1) The last time I watched it, about 25 years ago, there was some skinny, ginger girl shouting a lot. I found out tonight that the same, skinny ginger girl, now a woman, was still shouting. No sign of Mary the punk, though. 
2) Me and PWS BFF's mum, after drinking a couple of mugs full of Prosecco that had been nicely chilled in a Travelodge bathful of cold water, were pontificating about why the programme seems to fascinate our girls. I think I actually used the pretentious phrase: "It's a kind of a pantomime of social interaction." This amateur psychologists' babble balloon was swiftly burst by asking the girls directly why they liked it. One said: "Because of the shouting," and the other: "It's the swearing."

Tired, but happy, before retiring to her room for the night, PWS BFF checked 15 times with me that we would definitely be meeting up at 8am tomorrow in the Little Chef for porridge, just like we did today. My daughter then checked 16 times that my confirmations of the confirmation were confirmed.

Hopefully PWS BFF's dad won't lock her hotel key inside the room like he did this morning. And hopefully I won't be put at the front of a convoy of cars going to the restaurant for tea, blindly follow the sat nav instructions, and end up taking everyone needlessly up to the next motorway junction, only to drive practically all the way back to where we started, like I did this evening. That would be stupid.

Video is CW McCall - Convoy. I will pick a decent tune for the next post, I promise. First Duran Duran, and now this. What am I thinking?

Wednesday, 10 September 2014


I've been telling my son some werewolf tales as bedtime stories.

They were sparked by the glorious sight of the supermoon in the night sky, and the less than glorious experience of watching Alvin & The Chipmunks Meet The Wolfman (Damn you, Netflix, damn you!).

He was Wolfboy, I was Wolfmum, his dad was Wolfdad, and his sister was Wolfgirl. His 'really-need-to-know' questions were: if we preferred eating peoples legs, arms, or butts; if a silver bullet would kill us; and if we were shot, would we turn back into a “hooman bean” and be “nudey-rudey”?

Then he sliced in a couple of razor-sharp questions that slashed me right across the guts.

“Mum? Will my sister have Prader-Willi when she’s Wolfgirl? Will she have special needs?”

The questions took me by surprise. They sounded so adult, so perceptive, coming from the mouth of my little boy. What had made him stop and think about his sister’s condition? How much does he really understand about PWS, apart from her sweets and treats being a bit different to his, and her muscles not being as strong? And since when did he come over all empathetic?

I gave him a hug, and told him the only possible answer. 

“Yes, yes she would have special needs, and do you know what she'd be? EXTRA hungry. In fact, she’d be hungry like the wolf.”

Of course, now I’ve revealed this, I’m compelled to post that particular Duran Duran track. Which reminds me, if Simon Le Bon really does “smell like he sounds”, then he must be pretty darn rank.

Oh God, I’m so sorry. Do do doo, do do doo, do do doo, do do doo,  do-do doo.

Video is, well, you know what it is, and I can only apologise.