Sunday, 27 May 2012


My husband has been known to partake in D.I.Y. I’m not being rude here: I mean household jobs like putting up the odd shelf (and believe me, after he’s put them up, they are odd).

It’s always had a terrible effect on my daughter, because of the noise. It’s not the inevitable outcome of tools being thrown across the room in frustration (a particular ‘screwdriver whistling past my ear’ incident still makes me shudder). It’s the noise

The sound of drilling isn’t pleasant to anyone, apart from dentists, probably, but they’re weird. But my daughter is not fond of loud noises in general, and drilling is right up there in her top three worst sounds. It’s Number One, in fact, with ‘Music that is “too loud”’ coming a close second, and “Daddy’s Singing” in third place.

So. How’s our building work going, then?

We’ve had our garage demolished, concrete in our garden smashed up, and a dilapidated conservatory on the back of the house knocked down. Rising from the rubble is a new room, that will eventually become a restful haven for me and my husband to listen to music and watch films in* (*another room filled with the kids’ tat, where we'll fall asleep on the sofa).

Yesterday, some muscly men in shorts came to do the roof beams (or joists, struts, rafters, or whatever the technical term is).  I stationed myself with a cup of tea and a good view (Did I mention their muscliness? And their shorts? Oh, I did). 

It’s the only time there has been work at the weekend, and it wasn’t a particularly good idea. I quickly realised that my daughter has escaped most of the noise so far because she’s been at school, and by the time she’s back home in the afternoon, the builders are usually packing up for the day.

The sawing, hammering and drilling began, and my girl crumbled. She was tired anyway (the heat tends to wear her out), and as soon as I saw her stricken face, I knew we should have gone out.

The noise set off one of her familiar tidal waves of emotion. (See previous post Wave). I hate seeing a wave crash over her, and usually feel helpless, as they’re often random, and consequently I can’t always stop them because I don’t know the trigger.

At least in this case, the solution was obvious. We scooped the kids into the car, headed to Grandma’s house, and left the men (you know, the muscly ones, in shorts), to get on with the loud stuff.

My weepy girl, tired from the strain of the emotions that had coursed through her, had a sleep in Grandma’s spare room, and was back to her normal self an hour later, when her dad shook her awake and uttered Number One in her list of favourite phrases: “It’s time to eat!”. The sun continued to shine.

Video is Ian Dury & The Blockheads - Uneasy Sunny Day Hotsy Totsy (from the album Do It Yourself)

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Sunday, 20 May 2012


Yesterday, my daughter was bridesmaid at a family wedding.

It’s not the first time she’s been a bridesmaid; three years ago she performed the same duty for one of my best mates, and looked beautiful.

She looked beautiful yesterday, too, but in a different way. Yesterday, for the first time, she looked glamorous.

The wedding was a brilliant, non-pretentious affair: kids running riot; gingerbread men, cupcakes and donuts instead of wedding cake; and an impromptu game of football on the astroturf pitch outside the football club.

Bev, the bride, is my second cousin (don’t ask me what relation she is to my daughter, because even when I look up a genealogical explanation, I can't work it out). She was incredibly nervous when saying her vows in the register office, and the adrenalin pumping through her caused both near hysterical giggles and sobs in equal measure, which somehow managed to be simultaneously hilarious and touching.

Of course we’d made the usual plans in advance for my daughter over the food arrangements, chatting with Bev beforehand about timings and what exactly what would be available.

It was a buffet, which can sometimes be the worst possible scenario for people with Prader-Willi Syndrome. When you never feel full up, a table full of food at the side of the room can be problematic.

Not this one, though - it was in a little side room, behind closed doors, and my girl didn’t even see it. We were able to nip in, first in the queue, and fill her plate up with a veggieburger, and heaps of salad and peppers. A low fat pudding and fruit, plus a small piece of no-sugar cake to have in place of a donut, were then produced from my ‘magic’ rucksack (no classy, matching handbag for me, although I was wearing a frock, so what more do you want?).

My boy was in seventh heaven, running round with half a dozen other noisy little blighters, doing Bruce Springsteen knee slides across the dance floor in their oversized suits, and going ever so slightly ballistic with excitement at the smoke coming from the dry ice machine. I imagine his reaction was pretty similar to that of Neanderthal man when he first saw fire. 
He only stopped leaping around long enough to eat two sausages and three cupcakes. I’d also packed him a few marshmellows as a snack - he got so hot I considered trying to toast them on his cheeks.

We left quite early. My girl is currently slightly obsessed with how loud music is and if it will hurt her ears, so as the evening progressed, and the Sister Sledge got louder, she started to fret. She also wanted to go "before her curls dropped out".  But by this point both children were running on empty, anyway.

We got home, shattered, and about as happy as it is possible to be.

Video is Sister Sledge - He's The Greatest Dancer

Thursday, 17 May 2012


My daughter had to have a blood test yesterday.

As a season ticket holder over many years at several hospitals, she’s had this done a fair few times.

It started with her successful, if prolonged, audition as a baby-sized pin cushion in the hospital’s Special Care Baby Unit. This was just after she was born when doctors needed claret donations from her so they could diagnose what was wrong. The unit was referred to jauntily as ‘Scu-bu’ by the hospital staff (which always set off an appallingly inappropriate voice in my head singing: “Scooby Dooby Scu-bu, where are you?”).

Since then, as the years have rolled on by, whenever she’s had to have blood taken, the same thing has happened: nurses have struggled to find suitable veins in her arms. Luckily, her high pain threshold and consequent indifference to needles means this hasn't been as traumatic as it could have been. But it can be frustrating, and sometimes she starts to get worried when the process takes too long.

Yesterday's nurse, a splendid, super-efficient, chatty woman, who also happened to be clued up about all things Topsy and Tim (to my daughter’s delight), had one go on one arm, and decided not to go the usual route of trying the other one, coming back to that one, and eventually getting it on the fourth or fifth try.

Instead, she felt my daughter’s hands, which of course, were like little blocks of ice. Her feet and hands are always cold, thanks to her poor circulation (a common PWS trait).

“Cor, they’re freezing,” she remarked, and bustled off, returning with a magic trick, in the form of a bowl of warm water. “Stick your hands under the water, sweetie, and we’ll make those veins come out to play.”

Sure enough, a few faint, thin, spidery tributaries began to appear the pale skin on the backs of her hands. In went the needle, out went the blood, and my girl looked suitably awed. So did I, to be honest.

I think there’s a medical term for what happened. It’s called common sense.

Video is Nick Cave & The Bad Seeds - Red Right Hand

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Tuesday, 15 May 2012


Donald 'Duck' Dunn - legendary Booker T & The MGs bassist, the pumping heart of Stax, and that hairy fella out of The Blues Brothers - died the other day.

I was talking to my husband about it over tea, when I realised something odd had happened. My daughter, the one with Prader-Willi Syndrome, the one who ploughs through her dinner until her plate is sparkling, the one who will eat until everything is damn well ate, had put down her knife and fork and was looking stricken.

I couldn't for the life of me work out why she seemed so alarmed.

Then I realised. She stared up at me, her eyes wide.

"Is Donald Duck DEAD?"

Video is Booker T & The MGs - Groovin'. Mainly because this photo of a fresh-faced, grinning Dunn is just wonderful. Look at his little face. 

Monday, 14 May 2012


We've just spent a splendid weekend with family up in Yorkshire.

The highlight for my daughter, of course, was today's Sunday roast, the sight and smell of which elicited a huge gasp of delight as it was served up. "That looks LOVELY!" she uttered, her eyes gleaming at the sight of the carved chicken. We should hire her out to chefs undergoing a crisis of confidence, because praise never sounded so heartfelt.

Her Sunday highlight followed her Saturday highlight, which was an Indian takeaway (heavy on the tikka, light on sauces and rice).  When she eats this treat, her eyes close, and she goes into a kind of religious reverie.

When someone has Prader-Willi Syndrome it's only natural that the focus is on the dangerous and upsetting aspects of their physical, all-encompassing hunger. Their body does not send them the signals that say they are full up, and once diagnosed life quickly becomes about control and limitation of food.

But sometimes it's good to step back and take a fresh look at mealtimes. My daughter is truly happy when she's tucking in to food. An uncomplicated, natural joy. I see it flooding through her, as she savours every mouthful. Putting everything else to one side, it's a wonderful sight. It always has been. Probably even more so when her face is painted with tiger stripes (see the picture above).

My husband, on the other hand, mint sauce drooling down his chin after too much red wine? Not so much.

While we were up north, we went to a fabulous gig by Geordie folk band The Unthanks, at Holmfirth Picturedrome. They did a wonderful version of the song in this video - Here's The Tender Coming. 

Tuesday, 8 May 2012


My daughter tied herself in knots today, struggling with choices.

She was red-eyed and wild-headed when she got home from school.

Her teachers are trying to gently wean her off her current obsession with Hello Kitty by trying to get her to occasionally choose something else when she has the option. 

She’s so single-minded about her inexplicable love for the Japanese animated cat character that she’s announced she doesn’t like anything apart from Hello Kitty.

So the innocent suggestion that maybe she could pick a different picture to be used on her reward tokens went down like a cat in a sack in a well.

The tokens are little laminated pictures that the teachers stick on the wall of the classroom under the pupils’ names when they complete good work, or behave well. Unsuprisingly, my daughter’s icons have a feline theme. And she really didn’t want to change them.

We had a good hour of discussion on the matter. I say discussion, it was like looping the loop on a verbal rollercoaster and ending up back where we started, slightly out of breath and with a headache.

After some further contemplation, however, she suddenly voiced a new mantra.

“I am going to try and be good with choices, Mum,” she informed me. “You have to learn to make choices, don’t you? That’s what I’m going to do. I’m going to try and choose different things. Because you need to choose, don’t you?”

I agreed. The first time she said it, and then the second, third, fourth and fifth. By the 50th, despite my ability to filter out the repetition (a skill I’ve developed over the years to cope with the perseveration element of her syndrome, although my Mum would say I’ve always had ‘selective hearing’) I’d lost interest and much of the will to live.

I patiently explained to her that perhaps she’d talked about this whole thing for a little bit too long and that it might possibly have started to become annoying.

She tipped her head to one side, raised her eyebrow, and gave me a withering look.

“It’s because I’ve got Prader-Willi Syndrome, mum. You should know that by now.”

Video is Fat Boy Slim - Weapon Of Choice

"You can go with this,
Or you can go with that".

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Sunday, 6 May 2012


My daughter was on a mission this afternoon.

Earlier, she'd asked me to charge up her iPod touch, and now she was appearing at the doorway every few minutes with a spelling query, so I'd already guessed she was emailing someone.

When she asked me how to spell 'operation', I twigged what she was up to.

It took her about half an hour. When she announced, loudly, that she had finished, I called her into the bathroom, where I was bathing her brother, dodging handfuls of soap bubbles and telling him that if he peed one more time in the bath it would actually have more wee than water in it.

She stood at the door, pushed her glasses up from the bottom of her nose, cleared her throat, and read this out.

It's an email to a friend of mine who told us recently that her son, George, might have to have the same spinal fusion operation that my girl had.

I love that she's put 'Operation' as the subject header.
I love that she's somehow managed to change the date to 1970.
I love that she's felt it necessary to point out that the operation made her wet the bed.
I love that she's told him she cried. The op was tough - she's not glossing over this.
I love that she simply cannot write this without referring to at least one mealtime.
I love that she remembers exactly what books I bought her.
I love that she's thought to tack on a bit about 'fill'ing better.
I love every phonetically and not-so-phonetically spelt word.

Most of all, I love that she wanted to send this in the first place.

Video is The Pretenders - Message Of Love

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Saturday, 5 May 2012


We’ve got the builders in.

The undisputed highlight of the first week’s work was me giving the plumber an eyeful when he walked in on me as I stepped out of the shower. I told the builders I wouldn’t be embarrassed by them telling the story later in the pub as long as they tweaked the facts to make me a foot taller and three stone lighter. I’m waiting to see how my daughter regales her teachers with this story, as sometimes these tales change in the telling. It’ll probably end up with them thinking I’m a naturist. Or having an affair with the plumber. Or both.

My girl has coped well with the disruption, despite her initial worries about how noisy the builders were going to be. From an early age, she’s hated loud noises around the home. Luckily Mr Drakeygirl does very little D.I.Y. (Or as I like to refer to it: ‘Swearing With Tools’).

So my daughter had a panicky few moments when the mini-digger arrived on Friday morning. We’d told her it would be breaking up the concrete floor of our demolished conservatory, and she was getting a little frantic that the mayhem would begin before she went to school.

“It’s going to be really loud, isn’t it? I don’t want them to start until I’ve gone. It’s going to be too loud! I don’t like it, Mum!”

I pointed out that as the digger was in the road at the front of our house, and our car was parked in its path, there was no way any concrete smashing was going to occur until we’d gone. But it wasn’t until we were turning out of our close that she was willing to believe her ears weren’t going to be assaulted.

We’ll see how she copes over the next six weeks or so.

I have no particular worries about my little boy being disturbed by the sound of heavy machinery. He’s learning the lingo as he watches the builders in action, misses off the beginning of some of his words in his customary manner. I’m convinced he does this deliberately because there’s only a limited amount of daylight hours, and it’s the only way he can fit in everything he wants to say.

“Where’s our 'servatory gone? Oh yeah, it’s in the 'kip. This 'ouse is going to be the coolest 'ouse in the world. Can I 'rive the digger?”

I’m not sure which made me smile the most. Watching him sitting in the cab of the excavator, making engine noises, or learning from my husband that the digger’s pointy hammer end attachment is called a pecker.

Video is Mark Lanegan - The Gravedigger's Song