Tuesday, 31 January 2012


Parents of disabled children are no different to other parents. They like a night off. An evening free from child-wrangling responsibilities is a wonderful thing.

R.E.S.P.I.T.E. Find out what it means to me.

We’re incredibly lucky because my parents are picture-book perfect grandparents who do not protest - at least not out loud to us - when we take advantage of their good nature and dump, sorry entrust, the kids to ’em.

They know the rules with my daughter. She knows they know. Nanna cooks her splendid healthy teas, and her legendary no-sugar fruit cake. Grandad takes on the ‘chasing round the house’ duties with my little boy.

So on Friday we sloped off at lunchtime, to journey through the rain and traffic to see friends in Liverpool. An uproarious night ensued. Taverns and ale were involved. And chat. A lot of chat. The high volume of which had a catastrophic effect on what had been just a slight sore throat at the beginning of the night. By our return on Saturday afternoon I was mute. This is an uncharacteristic state of affairs for me, I have to admit. And today I can still only manage a strangulated squawk.

I had a marvellous time on my night out. Not as marvellous as my husband, though. Because he got to have a night out followed by three days of peace. Now that’s what I call a proper respite.

Video is Aretha Franklin - Respect

Sunday, 29 January 2012


I do bang on a lot about Prader-Willi Syndrome. You might have noticed.

Most people have never heard of the syndrome, and anything I can do to help change that fact, I will.

But I'd completely forgotten about this malarkey.

I used to work in local newspapers, and a colleague had left to work on the BBC's local TV news show. She phoned me to ask if she could do a feature on my daughter's condition as part of a series on childhood obesity.

I said yes.

So here it is, lower down on the page. Scroll down a bit to see it in all its three minute glory.

I would like to share some observations with you.

1) It's a broad brush stroke piece, but it's accurate, and well-meaning. More could probably have been said about the background of the older children in it, many of whom would have been diagnosed as teenagers rather than as babies. (Genetic testing had since improved drastically since they had been born).

2) I can still remember the rising panic in my head in the swing park as I genuinely thought I had got myself stuck in the "another dinner" sentence FOREVER.

2) I hardly recognise my old home. I have since moved, but not that long ago. It's just that when I knew they'd be filming, I tidied the arse out of my house. No, that doesn't mean I sent my husband packing. I mean I cleaned it as it had never been cleaned before.

3) With the benefit of hindsight, the film actually has a subtext about adult obesity: I'm three stone heavier now, Dear God.

4) I know I'm biased, but my little girl is as cute as something that is very cute. Times a hundred.

Video is the Look East Feature on Prader-Willi Syndrome, aired in August 2004. 

Video is Television - Marquee Moon

Thursday, 26 January 2012


One of the hardest things about living with Prader-Willi Syndrome is that there is no cure.

Your child is not going to wake up one day and be free of the condition.

But research is going on, and every now and again a little chink of light shines through the clouds. 

At the moment, the light is emanating from a drug called oxytocin. An endochrinologist in France has been trying to discover if oxytocin can benefit people with PWS. Adult patients were injected (in the nose!) with the drug, (with others receiving placebos), and their behaviour then monitored. Researchers also tested their grasp of social interaction and ability to recognise emotions.

Over the next two days - in comparison with those given placebos - Prader-Willi patients given oxytocin were more trusting, less sad, less disruptive and had fewer conflicts with others, and scored more highly in tests which evaluated social understanding.

The research has also indicated that oxytocin neurons may play a physiological role in ingestive behaviour as “satiety neurons” in the human hypothalamus. Translated into plain English, this means they could help someone with Prader-Willi feel something they have never felt before: full up.* 

A trial is currently underway using oxytocin nasal spray. This news is not to be sniffed at. (Do you see what I did there?).

Meanwhile, there’s another new drug in PWS town, too. Researchers in Australia are looking at Exenatide, marketed as Byetta, which is used as a daily injectable treatment for diabetes, which increases insulin secretion by acting on the pancreas. It’s the side effects of this drug which could prove useful in the battle to control PWS: mild weight loss, and appetite suppression.** 

Of course, there is a caveat with all this. While the word ‘breakthrough’ is whizzing round my head, I know these two pieces of research are new, small scale, and need years and years of robust development and testing. They might, after all this, prove ineffective.

But they could, potentially, help my daughter. And that's a bit of hope to hang on to, goddammit.

* If you’re a clever so-and-so, you can read the French study online in full in the Orphanet Journal Of Rare Diseases.

** The Aussie lot’s scientific stuff is here in the Journal Of Endocrinology And Metabolism.

Both of these studies were brought to my attention (and neatly summarised) by those lovely people from The Prader-Willi Syndrome Association UK and The Prader-Willi Association USA.

Now I’m going to have to lie down. I just used a whole host of words with more than three syllables and provided links to scientific studies. My brain hasn’t hurt like this since I did poorly in my GCSE chemistry exam. 

EDIT: In the comments below, Fazackerly mentions this very interesting talk by scientist Paul Zak on oxytocin - which he calls 'the moral molecule': Paul Zak: Trust, Morality And Oxytocin. If you have a few minutes spare, it's fascinating stuff.

Video is Thomas Dolby - She Blinded Me With Science

Tuesday, 24 January 2012


I went to a meeting at my daughter’s special school last night, where some of the staff were giving parents information about a trip coming up.

It’s a PGL ‘multi-activity’ holiday. Thousands of children go on them every year. They stay in lodges, and take part in things like rifle-shooting, raft building, archery, orienteering, abseiling, climbing, and fencing.

For most families it would really be nothing out of the ordinary. But it’s an AMAZING thing to me.

Imagine this: Three days and two nights away from home, in a strange environment, when you can’t cope well with change. Days packed with physical activities, which are challenging and even scary - especially if your muscles don’t work that well, spinal surgery means you can’t bend your back, and your stamina isn’t great. Menus that contain some foods you’re not allowed, so you have to be rationed whilst others can get stuck in. And all of this alongside schoolmates whose own set of idiosyncracies, weaknesses, and behavioural issues can upset you.

I wouldn’t want to do it. I don’t think I’d have the bottle.

But my girl, my hypotonic, titanium-rodded, routine-loving girl, can't wait to go. 

There are many parts to my daughter’s unique personality. But there’s a word that describes a beautiful and surprising slice of her soul. And that word is intrepid.

She’ll have a wonderful adventure. Now I’ve just got to find £150 to pay for it.

Song is Natalie Merchant - Adventures of Isabel, based on a poem written by Ogden Nash for his seven-year-old daughter, Isabel.

Sunday, 22 January 2012


The food thing.

It's a huge issue. I mean, it still stops me in my tracks when I actually think about it, even after all these years of living with my daughter's Prader-Willi Syndrome.

She never feels full up. We have to be rigid and regimented about mealtimes and portions and punctuality, and she courageously sticks to the rules. But her brain just does not tell her that she's had enough. We have to do that for her.

But sometimes it's good to turn the issue on its head. There is a flip side: By God, she enjoys her food.

Watching my daughter eat is a sight to behold. She doesn't dive in. She gets herself steady and comfortable, grips her knife and fork, and starts the slow, methodical, demolition of her meal.

Every spoonful is savoured. Head down, her hair flopping over her face, she will leisurely hoover up every last pasta shell or grain of rice. She'll scrape the lining off the bottom of every yoghurt pot. She is the Founder, the Secretary and the goddamn President of the Clean Plate Club.

She'll try ANYTHING. Recent favourites are a spoonful of lime pickle alongside a rogan gosh. She'll have crab, cockles, and sardines. Brussels, cauliflower, beetroot, radishes, and spinach. Muesli. Flaming hot Thai green curry. Pickled onions. Salads, casseroles, tagines, stir-frys and gumbo. Separately, obviously. Although, technically, I suppose, she would quite happily eat all of these together...

She's a chef's dream.

The toddler is another story.

Video is Dr John - Let The Good Times Roll (from the album Dr John's Gumbo)

Thursday, 19 January 2012


I’ve made it back to dry land.
Last night, I stood up, behind a microphone, in the upstairs room of a pub, in front of a room of strangers (see yesterday’s post: True).
I took a deep breath and I told my ten-minute-long story. Despite my nerves, I told exactly the story I wanted to tell, exactly the way I wanted to tell it.
It was about those traumatic few weeks after my daughter was born. I’ve written about this on the blog (mostly in my first few posts back in June last year). 
I chucked in the odd gag, to lighten the mood. A joke about my enormous knockers went down OK. You’re usually guaranteed a giggle from the men if you mention big boobs - apparently it’s the ghost of Benny Hill armed with a psychic tickling stick.
But there was one thing I spoke about for the first time. Something that was very hard to admit. I’ve just got off the phone to my mum, and she asked me what the “big secret” was that I had promised to “reveal”. (I think I got a bit over-dramatic in yesterday’s post). 
I couldn’t tell her on the phone. It sounded too cold, too stark.
So, sorry, Mum, as usual, you can find out all the stuff I’m too tongue-tied to say in real life by reading this. I know, I wasn’t too tongue-tied last night, but they were strangers, and the light was dazzling, and I wasn’t actually looking anyone in the eye...
Just as I thought long and hard about sharing my story last night, I’ve thought long and hard about sharing my “script” here on the blog. 
And I’m going to do it. 
I would apologise for the length, but hell, I had to learn this baby off by heart, so you’re getting the lot! Oh, and Mum? Sorry for swearing.


Thirteen years ago, I was very, very pregnant. (Not just fat like now). I’d been in to see my consultant when I’d gone a week past my due date, and he’d examined me and booked me in to be induced.

This was the cue for friends to give me lots of advice on how to make the baby come naturally. The top three tips were raw pineapple, curry and sex. I wasn’t exactly sure which order to have them in, or, indeed, if I was supposed to combine them.

Nothing worked. (Interestingly, though, I have since adopted "raw pineapple, curry and sex" as a mantra for life, and it's going great). 

So we trotted along to hospital on the allotted day, and that was when everything began to go wrong.

The baby was the wrong way up. And it had also decided to, how can I put it, “use the facilities before checking out of the hotel". So I was rushed for an emergency Caesarian.

I’ll say this for the NHS: they give good drugs. The anaesthetist asked me how tall I was as I was about to be taken into surgery, presumably checking dosage levels. "5ft 5in," I told him, starting to feel pleasantly spaced out from the injection. One of the nurses pumped the foot pedal to lower my trolley bed a little. "Hang on!” I said. “I’m only about 5ft now...”

And in I went. Up went a little screen, much rummaging went on behind it, and much grumbling came from the senior consultant. He wasn’t happy. He glared at me and said: “Why didn’t we know this baby was breech? You must have seen your consultant. They really should have picked this up. Who was it?”

I took great delight in telling him. “You.”

The rummaging continued, now accompanied by Olympic levels of harrumphing. And then, suddenly, amazingly, my baby was here. It was a girl. A beautiful girl. My Josie.

At first, we had no idea anything was wrong. Looking back now, I can see in the photos that she was blue around her mouth and her fingers and toes were the same colour. But everything seemed perfect, apart from the fact that she wouldn’t feed. This surprised me, because let me tell you, my tits were frankly enormous. So I had the Good Breastfeeding Cop, Bad Breastfeeding Cop treatment from two nurses. Nothing doing. Good Cop finally took pity on me and sneaked me a bottle of formula milk, but Josie couldn’t even manage that. She didn’t seem to be able to suck.

The paediatrician did his routine checks, lifting up her arms to look at her muscle tone. They flopped back down on the bed with a thump. He walked into the corridor with a colleague, closing the door behind them. I watched through a porthole window. Watched them deep in conversation. And I knew. I knew something was seriously wrong.

Five minutes later she was whisked into special care. Bad Breastfeeding Cop nurse couldn’t look at me. Good. Silly cow. Josie was put in an incubator, and covered with tubes and wires. No-one could tell us what was wrong and we had to wait. For weeks. In a stiflingly hot parallel universe filled with tiny babies struggling for life. And they ran test after test after test.

And then the time came. The invitation to join the people in white coats in that room. You can spot that room easily. It’s as drab and grey as all the other rooms except it has cheerful curtains and a box of man-size tissues on the table. This is a room that positively reeks of sadness and disappointment and lives turned upside down. A bit like Butlins.

The blood tests and investigations had finally produced a result: our daughter had a very rare chromosome disorder. We were given a print-out of a website page, telling us what it meant. 

As I read the details, I was physically winded. It felt like someone had punched me in the chest. All the air was knocked out of my lungs.

Its name was Prader-Willi Syndrome (named after the doctors who discovered it). It affects the part of the brain which controls appetite, growth and sexual development. People with PWS are short, have learning disabilities, are socially immature, can’t have children and are unlikely ever to be able to live an independent life.

And although they’re too weak to feed as a baby, children with PWS grow up to have an insatiable appetite, and never physically feel full up. They are always hungry. But, because their bodies can’t convert fat to muscle efficiently, they have to be on a strict diet. For life. If their food intake isn’t controlled, they will suffer from life-threatening obesity. It’s a double whammy. Torture squared.

Oh. And there’s no cure.

Thirteen years on and that time, that bleak, bleak time seems like somebody else’s nightmare.

I wish I'd known then what I know now. I wish I'd known then how our daughter would slowly grow stronger, and with the aid of various casts, braces, wheeled walking frames and contraptions, would learn to stand, to walk, to run, to dance.

I wish I'd known then how each milestone reached would bring such elation.

I wish I'd known then that the uncontrollable appetite could usually be managed - to some degree - with lots of planning and distraction. And with the help of her limited understanding of fractions. “Mummy, if I cut this in half, is it twice as much?” “Yes. Yes darling, it is.”

I wish I could have looked five years forward and seen myself gripping my girl’s hand tight when I walked along with her as she skipped through the gates for her first day at school.

I wish I could have seen the look of glee on her face as she belted out a pretty stirring rendition of “Sheena is a Punk Rocker” to her new teaching assistant when she learned her name was...well...Sheena (who I’m not sure was a punk rocker. Except possibly on weekends).

But there’s one other thing I wish. And this is the difficult one.

Before we got my daughter’s diagnosis, in amongst the hundreds of tests was an MRI. And the doctors had showed us an image of Josie’s brain. Showing up in stark contrast to the grey, walnutty swirls were five or six little, white wiggly lines, like tiny worms.

“What are they?” I asked. “What do they mean?” 

“We don’t know for certain,” they said. “They could be scar tissue. And they could indicate permanent brain damage.”

It turns out, of course, they didn’t mean that at all. They were a red herring. To this day, no-one knows what they are, but they don’t seem to have had any effect on her life. They’re just there. 

But we didn’t know that at the time. I looked at that scan, and I thought of my daughter lying motionless on that hospital bed, and I thought she’d be like that for life. Trapped. Unable to breathe, unable to talk, unable to feed herself, unable to move. 

It shames me to my bones, but I wished her dead. I wished my beautiful, new, baby girl had never been born.

God I want to go and slap my stupid face. I want to yell at myself: “Don’t you KNOW? Everything is going to be ALL RIGHT!”

Because it is. 

Now I know I’m a lucky person. I was lucky enough to meet my husband, the strongest, kindest man I have ever known, when I was too young to actually appreciate that’s just what he was. To be honest, I just thought: nice face, nice arse.

And after some false starts we were lucky enough to make Josie. The ingredients might have been a bit off, but we made her. And do you know what? She’s a happy girl. She leads a good life. She was Cinderella in the special school panto (that was a show and a half). She goes camping with the Guides. She loves Justin Bieber. I’m not going to pretend life hasn’t been tough. (The Bieber love has been particularly hard to stomach). But God, it’s also been FUN. And joyful.

We’ve even been lucky enough to make another one. A boy, who's three now, with no health problems. Who -  if I’m brutally honest - is 10 times the trouble that his sister is. The little bastard.

So now I’ve said my secret out loud, it feels good. Like opening a valve and letting that toxic thought finally escape. I think it’s time. Time to move on.

Video is Piney Gir - Outta Sight (One of the storytellers at True Stories is always a musician who also performs a song, and Piney Gir was last night's troubadour.)

Wednesday, 18 January 2012


I’m a bag of nerves this morning.

In 12 hours time, I’ll be taking part in an event called True Stories Told Live.

In an upstairs room in a London pub, in front of 80 or so strangers, I’ll be speaking for 10 minutes, without notes.

You can probably guess what my story is about: my unique and lovely daughter.

Some of the speech will refer to things I’ve mentioned on this blog. It will also reveal an uncomfortable truth I’ve never said out loud before.

I hope it goes well. I hope I’ve judged the tone right. I hope I can get through it.

I’m slightly worried that most of my practising has been done as an internal monologue whilst swimming. Although if the dry-land recitation is looking wobbly, a friend has promised to don a pair of red shorts and throw me a life-ring.

At the risk of drowning in swimming analogies, I'm going to be throwing myself in at the deep end. I need to pace myself, and - most importantly of all - I must remember to breath.

I’ll see you in the changing rooms afterwards.

Video is John Williams - Theme From Jaws

Video is Frightened Rabbit - Swim Until You Can't See Land

Sunday, 15 January 2012


My daughter manages well on the flat.

She’s a bit splay-footed, and has a frankly duck-like gait, and walking tires her out, but on a level surface she ambles along quite happily with others.

Introduce a slope, or a step, and she slows right down. It’s all I can do to stop my three-year-old boy sprinting up the steps to a slide, while my teenage girl has to tackle them at extremely low speeds and with extreme caution, her hypotonia (poor muscle tone) exerting its insidious influence.

But she’s determined.

I found these photos the other day. They were taken in Chamonix, France, on a summer holiday we took with friends in 2007.

We spent the morning at a climbing wall. Not a fake one, but a real rock face, on a sunny day, surrounded by stunning mountain scenery.

And the kids were scaling the cliff. The older ones in particular were like mountain goats, grabbing footholds and toeholds and nipping up there like lizard-worshipping Tom Cruise on steroids.

My girl had had a little go the previous year, and only managed to get up as high as we could reach to support her.

She looked at her peers and their older siblings and got this look on her face. It’s the kind of look a sprinter gets in the blocks, or a weightlifter gets as he’s rubbing powder onto his hands.

Then she stepped forward, took the climbing instructor’s hand. (He was a rather fit fellow who had already reduced the adult females in our party to jelly).

And she started to climb. Slowly, painstakingly, she climbed. With a helping hand here and some guidance there, she scaled the rock wall all the way to a ledge about three quarters of the way up - just as far as most of the other kids her age.

And what I remember most was my mate’s little girl (who had been brought up knowing all about my daughter's problems and challenges in life) turning round and shouting excitedly to the rest of the party: “LOOK! LOOK WHERE SHE IS!”

All the kids came running and gazed up at my little girl, awestruck at what they all realised was a superhuman effort.

She grinned back down at them, her chest puffed out with pride, and the instructor beaming beside her.

Mind you, he wouldn’t have been smiling if he had realised how long it would take to get her down.

Song is Mercury Rev - Climbing Rose

Friday, 13 January 2012


It just doesn’t make sense.

The most vulnerable members of our society are being targeted. While the richest remain bullet-proof.

280,000 disabled people will have their benefits cut from April 1. 

New tests by doctors and independent assessors will have to be carried out at regular intervals. The cost of this? £675 million. 

And this impassioned plea from a disabled man who says the changes will strip him of his last shred of dignity.

But what I’d really like you to do is take a minute out of your day to sign this e-petition.

Just click here to sign your name.

Thank you. Please use the buttons at the foot of this article to pass this message on to as many people as you can. It's important.

Video is a performance of John Cage's 4'33"". 

Wednesday, 11 January 2012


I’d like to announce that this morning, from 9.30am, I will be doing absolutely nothing.

This ‘nothing’ may involve having a cup of tea, but that's it.

Well, it could also include the small amount of effort involved in putting a record on, but that is bloody well it. I’m not getting back onto my feet to turn it over.

For it is a momentous day. I will be dropping off my daughter at the doors of her special school, as usual, once the usual morning routines have been performed.

But today, instead of heading to the park with my son, the little fella will be herded round the corner and into a building that will become his regular morning hangout: nursery.

Yes, I have lots of things that I should be doing: a freelance writing job, learning a speech I’ve got to deliver, phone calls, paperwork, picking up prescriptions, ringing builders, sorting out the washing, food shopping, cooking tea and Lots. Of. Other. Stuff.

But do you know what? They are going to have to wait. This morning, for a couple of hours, I’m going to put my feet up and do bugger all. 


Do Not Disturb.

*switches brain to standby*

Video is Elastic - Waking Up

Monday, 9 January 2012


I love this picture. I absolutely love it.

It's a group photo from a chaotic, funny, fabulous, family holiday spent with my parents and my two brothers and our children in a ramshackle old Norfolk farmhouse in 2005.

I love it because of its imperfections, not despite them.

I love the way most people aren’t looking at the camera. I love my niece Kate having a tantrum, and Aunty Angela trying to talk her down, while her dad tells her to get a grip, and her big sister Jess looks on in disdain. I love my Mum and me (far left) looking like little chubby peas in a pod. I love my Dad on the other end, completely oblivious to the mayhem going on behind him.

And I really love the sight of my girl, wriggling out of my grasp, because she didn’t want to line up. All she wanted to do was go and find some more peacock feathers to add to the few she's already collected and is clutching tightly.

The reason I love that so much is because she’s in the thick of it. Getting fed up of posing. Doing normal kid stuff.

When she was diagnosed with Prader-Willi Syndrome, I never dreamed this would be achieveable. I thought the issues with food would make extended big family gatherings impossible.

But we all spent a week living, snacking and eating together. And watched in amazement as our hungry little girl insisted on waiting way past her normal tea-time in order to eat with her cousins. 

It was such good fun, we did it again the next year. But because we’ve now got a bigger clan, different jobs, and most of the kids are now teenagers and twenty-somethings, logistics mean we probably won’t all go on holiday together again.

Maybe that’s the real reason why I love this picture so much. 

To everyone else, it might just look like a bit of a rubbish line-up. An out-take, even. For me, it bottles a bit of the magic from a magical time that's now out of reach.

Video is McFly - All About You (one of my daughter's favourites from this year.)

Saturday, 7 January 2012


Some of my daughter's favourite books are Francesca Simon's Horrid Henry stories.

If you're not familiar with them, they can be summed up quite simply: they centre around an extremely naughty schoolboy, who is called Henry, and can be very horrid. You could probably have guessed that for yourself.

My daughter, unlike most children, is fascinated by a secondary character. Unlike the vast majority of readers, who dream vicariously of being like the eponymous anti-hero, playing tricks on teachers and getting up to all sorts of mischief, my little girl worships Henry's brother, Perfect Peter. He's a nauseously polite, irritatingly pleasant, Aryan Youth-style, sanctimonious, little sod.

But in my daughter's eyes he's the real hero. I write here sometimes about my girl's rebellious, stubborn streak (see the last entry, Scratch). But it doesn't surface very often. Most of the time she is incredibly well-behaved and delights in doing her homework, getting tokens for good behaviour at school and seeing rows of happy faces added to her reward chart at home.

Her little brother, on the other hand, is rapidly growing up to have - how can I put it? A problem with authority.

The other morning, he was running round the house, yelling, having already been told off for trampolining on the sofa, throwing a DVD like a frisbee, and calling me a 'pooey bum'. (This last one strikes me as not only rude, but hypocritical, seeing as he's only recently potty-trained and still drops the odd log in his pants).

My daughter watched all these shenanigans quietly, looking up from her Horrid Henry book every now and again, with a world-weary expression on her face. And in one of those surprisingly brilliant bursts of vocabulary she sometimes displays, said the following:

"This family, Mum," she said looking around at us all. "And this family," she added, nodding down at her book.  "There are a LOT of similarities."

Video is Feargal Sharkey - My Perfect Cousin

Wednesday, 4 January 2012


Shower time for my daughter ended in tears in the other night. Mainly from her, but some from me, too.

The household was lightly frazzled by evening, anyway, after some Olympic niggling between the kids.

My patience was gossamer thin by the time I tried to get my girl into the shower cubicle, to set about washing her hair.

But she wouldn't step in. And she wouldn't stop scratching.

People with Prader-Willi Syndrome can have a tendency to skin pick. I'm not just talking about the urge you have to pick at a scab once or twice before you force yourself to leave it alone. I mean doing it repeatedly, enough to cause infection and even scarring.

With my daughter, it manifests itself in the form of scratching. She often ends up with a sore-looking neck or arm after sitting and repeatedly scratching an itch. We put E45 cream in her back at night to ease her urge to scratch along the length of her spinal fusion scar (or at least the bits she can reach).

On this occasion, it was defiant. I told her to get in the shower and stop scratching her tummy, which had lots of red marks on it. But for some reason, this turned out to be one of those rare occasions when my daughter decides out of the blue to be rebellious. She looked me straight in the eyes, planted both hands on her stomach, and started scratching even more furiously, her skin turning an angry red.

I tried to grab her hands but she increased the speed, her nails digging in and even causing a couple of pin- prick-sized spots of blood to appear.

There followed a short battle, where I had to resort to the underhand tactic of bundling her in the shower cubicle and deliberately aiming the nozzle so the water flowed over her face and into her eyes (which she hates).

It broke the spell. The scratching frenzy finished.

She was struck with the guilt that always hits her after a display of odd behaviour. Floods of tears ensued.

A cuddle on the sofa , a light hot chocolate, numerous sorrys from her for ignoring me and several sorrys from me for shouting, and it was all over, as quickly as it had begun.

Video is Morphine - Scratch

Sunday, 1 January 2012


I stumbled across this list yesterday*. It was created by a young man with Prader-Willi Syndrome who had a New Year’s Wish ‘for people to know what it feels like to have PWS’.

When asked how he could get his wish, he said: “People could do some of the things that I feel every day, just for one day and maybe they would understand.”

It's a real eye-opener.

Here’s his list. If you like - and in the spirit of New Year's Resolutions -  you could pick one or two of the challenges to undertake. Just for a day. See how you cope. And then think about living your life like this. Every day.

1. In the summer, turn up the heat and wear extra clothing or in the winter, wear very little clothing and turn the heat down.

2. Only eat ½ of your meal, breakfast , lunch or dinner and leave the table hungry.

3. Go to an office or school party with all the extra food and goodies before eating lunch and DO NOT EAT ANYTHING! 

4. Put cookies, cupcakes, or other goodies that you like on the counter and be sure to walk by them every time you go in the room but you can NOT eat any!

5. When you are really hungry watch someone else eat something that you LOVE, knowing you cannot have it.

6. Do something out of the ordinary or different in public and look around to see someone stare, laugh or tease you because you are different. 

7. Lock your cabinets or refrigerators and give someone else the key. Tell them to only let you eat when it is meal time or time for a snack. DO NOT eat in between meals. 

8. Restrict your calories to only 1100 calories per day including all meals and snacks. Count all calories including drinks. ONLY eat 1100 calories!

9. Drink only sugar free, diet drinks or water do not drink liquids that contain calories.

10. Never go into the kitchen, pantry or cabinets unsupervised. Only enter the kitchen or dining room if someone else is with you and can be watching what you are doing.

Video is Eels - Guest List

*The list came from an entry by Janis Tull Williams on the Prader-Willi Problem Solving And Solutions Exchange page on Facebook