Tuesday, 30 July 2013


I remember sun-kissed holidays from my youth.

Running in and out of the sea wedged in a blow-up dolphin rubber ring, going wrinkly from spending hours in the camp swimming pool, catching crabs at Wells. And that was just on one Club 18-30 holiday.*  (*joking Mum, for God’s sake, I’m joking).

Our holidays were special; it’s not just the rose-tinted specs of hindsight filtering them pink. I just remember having mountains of fun, with Mum making amazing cars and boats out of sand for us to play in, and Dad being the biggest kid of all, horsing around on the beach, always, always playing games with us.

We returned last week from a special holiday of our own. It was our turn to be the responsible grown-ups. We took our two kids to the Isle of Wight for a week, to a cheapo Haven Holiday-alike family resort, and thanks to the magical ingredient of constant sunshine, and the marvellous horsing-around skills of my husband, I’m hoping we’ve managed to brew up some potent solar-powered memories for our children.

When you go on holiday with a child with Prader-Willi Syndrome, there’s an extra level of planning. As well as the sun-cream and beach towels, you make room in your bags for healthy snacks and a low-fat picnic for the journey, because you can’t rely on motorway service stations to have low-calorie menu options. You stick a couple of extra items of healthy food in your glovebox just in case you get stuck in a traffic jam. You pack that emergency tuna pasta meal that doesn’t need to be kept refrigerated just in case the traffic jam turns out to be a monster of a marmalade. (By the way, terrorists, you’ve really put a spanner in the works when it comes to foreign flight travel, because in the eyes of airport security a low-fat jelly pot might as well be a low-fat gelignite pot, you utter bastards).

When you travel with someone with PWS, you have to check venues and menus in advance of mealtimes to be sure you’ll be able to order something suitable at the right time of day. And if you’re the parent of my particular PWS child, then you also have to check whether a restaurant or pub sells tomato juice, and even more importantly, will add the required large dash of tabasco or Worcestershire sauce to make it spicy.

But I’m making this all sound like a a right pain, when it isn’t. Because after 14 years of this, it becomes second nature: we know which lollipops are under 80 calories; we’re used to strolling along the esplanade, peering at the restaurant menus and opening times a little more closely and a little earlier in the day than most; and we’re canny about splitting that afternoon snack so that our daughter can have some ‘extra’ nibbles on an evening out in the holiday clubhouse, as she watches redcoat wannabes sweat their little socks off. (And boy, with the weather we had, they really were extremely sweaty. I’m convinced that whoever was hidden under the furry, thermal layers of the Mr Bear costume must have been on a drip after each performance). 

We visited theme parks, we rode in cable cars down to The Needles, we got stuck in giant deckchairs, and we played and lazed on the beach where my my husband and little boy built sandcastles and dams whilst my daughter and I read on sun loungers under a parasol, having an English siesta, otherwise known as ‘a little nap’.

We had a blast. A sunny, blazing blast. I’ll remember it. I hope they do, too.

Video is Sex Pistols - Holidays In The Sun. Again, sorry Mum.

Tuesday, 23 July 2013


I’ve been carrying something heavy around with me. It’s an unwieldy backpack stuffed with worry. I hooked it over my shoulders at the beginning of the year, and it’s been digging in to me ever since.

At first it was hugely awkward and I was constantly aware of it. But over time, I got used to it - and I didn’t realise how much it was still weighing me down until today, when a complete stranger helped me meticulously sort through its contents and find somewhere else to put them for a while. Damn, it’s good to take a deep breath, stretch out, pull my shoulders back, and stand tall. 

I’ve written extensively on this blog about my daughter’s unusual sleep patterns and uncharacteristic behaviours that have been buffeting all our lives in tempestuous cycles in recent months. We’ve had medical tests which have so far revealed no obvious physical cause. We’ve a paediatric referral, which failed to reassure me in any way, and we’ve been lost - for some considerable time - in the error-strewn circle of hell known as NHS admin.

But today, we saw a psychiatrist for the first time. He was a hugely experienced, gentle, gentlemanly man, and I spent three hours encased in a room talking to him on the hottest day of the year.  He met my daughter, or rather the spaced-out version of my daughter that appears after a sleepless night, which was probably rather fortuitous timing. He took an exhaustive and exhausting medical history that taxed my memory and stamina. When he told me he was keen to discuss my girl's case with a long-standing friend and colleague who just happens to be one of the most foremost experts on Prader-Willi Syndrome in the UK, and whom I’d watched make a presentation at yesterday’s International PWS Organisation Conference, the relief flooded through me. 

We were in the right place, seeing the right person. This occurs less frequently than you think, and oh, how fine it feels when it happens.

There’s a long way to go. The phrase ‘mood disorder’ has been mentioned for the first time. This is in no way a diagnosis, and there is still more medical evidence to gather and examine, but it’s being looked at. A plan will be made, with input from good, knowledgable, experienced people. Something practical is happening. We have momentum. 

Oh, and dear God, I almost forgot, which would have been unforgiveable. Thanks, Mum, for sitting in that tiny, sweltering waiting room all afternoon. Steve McQueen had a baseball to keep him occupied in The Cooler, and that cissy had it easy - you had to sit in the sweatbox with my PWS daughter (at various points), and my ants-in-his-pants son (at all points and beyond). You know, I really wouldn’t have blamed you if you’d revved off and tried to leap the fence on your Triumph motorbike. Well, Raleigh Shopper, maybe.

Music is ├ôlafur Arnalds - And They Have Escaped The Weight Of Darkness

Monday, 22 July 2013


People with Prader-Willi Syndrome are extraordinary. I forget sometimes just how extraordinary, and then a day like yesterday comes along.

The extra-extraordinariness manifested itself in a lecture hall at a conference, in the hallowed surroundings of Fitzwilliam College, Cambridge University (a place I was too thick to study at, but where I can now say I have studied, even if it was just for one day).

I was there attending the 8th International Prader-Willi Syndrome Organisation Conference. I could only go for Sunday's programme of events, but I’m glad I made it. I’ll try to share some interesting things I learned from various presentations when I’ve had chance to digest the information. For now, I just want to tell you this...

I can still feel my skin tingling. And no, that’s not just the effects of this country's recent, inexplicably lengthy bout of glorious sunshine. I may have needed Factor 50 protection, but it wasn’t to shield me from the sun’s rays, it was to stiffen my upper lip and stop me blubbing.

What got me wobbling was the glorious sight of a bunch of adults with PWS, of varying shapes and sizes, and differing degrees of eloquence and ability, standing up and speaking in front of a lecture hall full of scientists, doctors and parents. Some had taken part in clinical trials and were there to speak about this experience. Others talked more generally about their lives, living at home or in group homes. An Australian man’s rambling, stuttering, childlike glee in telling us of his love of walks and breakfast was a joy to behold. An Irish fella’s pre-emptive and then subsequent, laughter at his own joke led to a mini Mexican Wave of infectious giggling in the audience. One woman’s fluent, structured, matter-of-fact description of the sadness of her life and how she never felt she fitted in anywhere was heartbreaking. A fourth extraordinary PWS delegate spoke about how her behaviour had improved after the implant of a tiny pacemaker-like stimulator, which worked on the vagus nerve in her neck, so much so that she felt it had played a huge part in enabling her to have the ‘greatest day of her life’ - her wedding day.

The PWS on display today magnified my conflicting thoughts and feelings about the syndrome, took my heart in its fist and squeezed.  The more I learn and the more I see of PWS, the more amazed I am at the power it has to thrill you, chill you, surprise you, entertain you, sadden you, slap you, tickle you, and astound you.

These people with PWS share so much and yet lead wildly different lives and are as disparate as they are alike. The parents who were there, and who came from very different parts of the world, share an extraordinary bond, too. It’s a link none of us chose, but it’s steely strong.

Song is The Decemberists - I Was Meant For The Stage

Friday, 12 July 2013


She leaned towards me, an excited look on her face.

“You’ve got to dance, too, Mum. And Daddy. All the parents have to do some medieval dancing with us. My teacher said.”

I laughed, then mustered up my best serious look, and gripped her by the shoulders.

“Listen very carefully to me, sweetheart. You mustn’t say that again before tomorrow. If you want Daddy to come with me to your Medieval Day, then you must not, under any circumstances, tell him that he’s going to have to dance.”

She conjured up a suitably solemn face in response.

“Does it have to be a secret?”

“Yes, yes it does. He will join in, I promise. But he won’t want to come if he thinks there’s going to be audience participation. Not since that show where he had to be the five gold rings in The Twelve Days Of Christmas. Do you remember his grumpy face?”

She nodded. We agreed to keep schtum.

Medieval Day proved to be riotous fun. My daughter’s special school satellite class had worked extremely hard to put on an afternoon’s entertainment for parents, with the teacher and one teaching assistant going the extra mile and dressing, respectively, as the lady of the manor and a rotten-toothed peasant.

The kids had been to Asda and bought and prepared food for a banquet. Just as they would have done in medieval times, obviously. As a parent of a child who has Prader-Willi Syndrome and who has to be on a strict diet in spite of never physically feeling full up, the idea of a school banquet should fill me with dread. But it says a lot about my trust in the school that I wasn’t concerned about the temptation of food. I knew the staff would keep my daughter busy with tasks, and watch her closely to make sure she didn’t ‘graze’ as she helped wash the fruit and set the table. Her teacher always liases closely with me over any food-based activities, and there was plenty of healthy stuff for my girl to eat. So she didn’t use the opportunity to gobble down too many chicken legs and throw the bones over her shoulder in a medieval manner. She left that to her father and me.

The afternoon flew by. (Apart from the playing of a medieval tune on recorders - more than two notes, I felt, was unnecessary). We got to look at all the different medieval projects the class had completed this term: they’d created apothecary's unctions and remedies; they'd visited a castle and a birds of prey centre; they’d made medieval ‘board’ games; and they’d built some miniature wattle and daub houses. The day also included a quiz on some of the things they’d learned, and every pupil looked like they were going to burst with excitement has they shoved their hands up in the air, desperate to get their answers in.

And we got to dance. Anyone noticing the expression on my husband’s face when he was told he had to join in could have been forgiven for thinking he'd just received a diagnosis of The Black Death. But he did it. It was a bit of stepping and hopping and twirling, nothing too challenging. We held hands, trod on eachother’s feet, made our kids laugh. 

It was a real, proper feast. I’m not just talking about food. We consumed it all, greedily: the laughter, the excitement, the learning, and the love. 

Now, where exactly did that chicken leg go?

Video is Chic - Everybody Dance. What? You'd prefer a madrigal?

Related posts: Steps

Monday, 8 July 2013


The weather was glorious for my daughter's special school sports day. As usual, I slathered the kids in sun-cream and forgot to slap it over my ample surface area. Consequently, I'm ever so slightly singed. I have a sunglasses-shaped white 'mask' on my face, outlined in pink where the sun has caught me. I look like a chubby, overheated Zorro.

I knew it was going to be a good day, from the moment the tannoy blared out The Stranglers' Go Buddy Go followed swiftly by What Do I Get? from the Buzzcocks. Punk seemed an apt musical genre: the do-it-yourself punk ethos is embraced by kids, staff and parents alike at these kind of school events. Anyone can take part, 'join the band' of wonderful, wonky atheletes, and have a go. Thankfully, there wasn't much spitting.

The races were haphazardly organised, with late entrants dashing across to join in, and the starting gun only firing when it felt like it. The Whole School One Lap was a particularly chaotic highlight. There were cheers as the more physically-fit pupils raced across the finishing line, and even bigger cheers as the stragglers appeared (sometimes minutes later) being guided by members of staff. The participants were mis-matched in height and ability but equal when it came to the width of their smiles.

Meanwhile, at the back of the field, children who weren't taking part in whichever sprint or egg and spoon race was being contested were free to wander around in little class groups, trying out activities including tennis, skittles, golf, frisbee, and javelin. You'll be pleased to know that plastic, not metal, javelins were in use. I looked at my son who had tagged along for the fun after finishing his morning at nursery and realised in a few years time, terrifyingly, he might be using a proper spear at his school sports day. God help us all.

My girl, the one with Prader-Willi Syndrome, and poor muscle-tone, and a pathological hatred of running, joined in. She stuck together with her little buddies in her class, a tight-knit little team of day-dreamers, pottering about, ambling from one activity to the next, taking part. And all this was after a morning visit to the orthodontist to have her bottom brace fitted. It was a lazy, hazy, amiable effort. She was never going to win any events today, but she still finished the afternoon proudly clutching a shiny medal.

Every child got one. I know this annoys some people, who think medals for all devalue sports days and stop children from learning how to strive and achieve and be competitive. Well, two fingers to them. Some of these kids have to be wheeled across the line. Some can't walk unaided. Some can run, but have no idea which direction they have to go in. One, who was about to cross the finish line in first place, stopped, clapped her hand on her forehead, turned round and returned to the starting blocks to pick up her hat, before running the race again at full speed, alone, and now last. She didn't care. Neither did we.

The boys and the girls are all dancing around 
Dancing all night to the crazy sound 
It's the newest thing to hit this land 
The boys and the girls are holding hands 

I said 
Go Buddy

Go Buddy 
Go Buddy 
Go go go

Video is The Strangers - Go Buddy Go

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