Thursday, 31 October 2013


Nosferatu, eat your heart out, sucker.
The annual sugar rush of Trick or Treating was not designed with Prader-Willi Syndrome kids in mind.

Children who don’t physically feel full up and buckets full of unsuitable sweeties and chocs are not a good mix.

Strictly speaking, as someone who has just had to peel my pumped up, jitterbug, vampiric son from the ceiling, that much sugar is not really a good mix for kids who don’t have PWS, either.

But our daughter, the one who has to have her diet strictly monitored, and the one whose calories we have to limit, loves Hallowe'en - the whole bat to pumpkin lot of it.

So we do what we always do: prepare, control and substitute.

We only target a few select Hallowe'enie homes: neighbours, aunties, uncles, and grandparents. Instead of Haribo multipacks, or kiddy meth delivery systems as I like to call them, savvy relatives dish out lower calorie snacks (raisins, breadsticks, Flump marshmallows, etc). If anyone sticks in normal sweets or chocolates, I do a quick switcheroo, delving into a ‘here’s one I made earlier’ bag of no-sugar substitutes. I let my daughter have a rummage through the treats and choose one thing to eat when we get back home, and then we save the rest for snacks to eke out (or as it’s Halloween, that should probably read ‘eek’ out) throughout the week.

The kids are settled down now, in front of a film called Corpse Bride, which isn’t quite as horrific as it sounds, and is for children, honestly.  

It’ll soon be time to tuck them into their coffins.

It’s been blood-sucking, stake-avoiding, crypt-creeping, pointy-toothsome fun.

Video is Jace Everett - Bad Things (the theme from vampire series True Blood). "When you came in the air went out." That's a killer first line, isn't it? 

Related post: 

Sunday, 27 October 2013


Winding back the clocks unsettles my daughter. She can’t move the little hands round in her brain and click the concept into place.

It didn’t help that I used the phrase: “We’ve lost an hour.” The response of: “But where’s it GONE?” was, of course, inevitable.

It’s a difficult enough concept, anyway. Add in the rigid mealtimes required in a semi-militarised Prader-Willi Syndrome household, and it’s a ticking time bomb of confusion.

Luckily, she was tired this morning and had slept in a little, so it was relatively easy to stagger the breakfast/dinner/tea times to fit into an artificial approximation of her usual pattern.

And, thankfully, at the moment, timings don’t have to be quite as exact as they were when our daughter was little. In previous years, when she’s been up with the lark and feeling particularly hungry, we have been known to refer to the clocks going back to something called ‘Greenwich Really Mean Time’).

Our girl understands more now, can be reasoned with to a certain degree, and is more capable of making choices. She’s willing to have her dinner or tea an hour or so later than normal if she knows she’ll be eating out somewhere as a treat with family or friends. Counter-intuitively, despite her fierce hunger, she sometimes gets even more agitated if mealtimes are brought forward, but if it’s for a particular reason that you explain clearly and give her enough advance warning about, she will accept it. Changes to the food timetable in whatever form they take aren’t something you can just spring on her: they have to be carried out in accordance with the detailed blueprints.  And, just like on Grand Designs, you should really try to stick to the architect’s drawings wherever possible, otherwise the ceiling will fall in.

So we had a morning of discussions about time, hours, time going backwards and forwards, how clocks change, why some change by themselves, why I’d forgotten to change the kitchen clock, why her watch was wrong, why her snack time was 10 o’clock but not really 10 o’clock, what time it was now, what time it would have been, and when will it be dinner time.

The clocks weren’t the only tightly wound-up things in our house today.

Video is Dr. Feelgood - She's A Wind-Up

Video is Cher - If I Could Turn Back Time. Just because I turned back time today, and it gave me an urge to wear fishnets and straddle cannons.

Related posts: Clocks

Friday, 25 October 2013


My daughter came home today with her head in a bag. It’s either charming or terrifying, I just haven’t decided yet. 

It was the last day of school before half term, so I was expecting her to bring home her PE kit, which only comes back for a wash during school breaks, and therefore is a) a bit whiffy and b) more wrinkled than the testicles of an elderly elephant that's spent too long in the bath.

Her brother was also weighed down with the drawstring bag/smelly trainers/shorts combo, and in addition a cardboard item which I think was supposed to be a telescope, but he insisted was a ‘fart torpedo launcher’. All fairly par for the course, to be honest.

The head took me by surprise.

“It’s my head mum. My actual head.”

“Well, when you say your actual head, that’s not quite right, because you’ve still got your actual head, this one is just a copy, sweetheart.”

“It’s not, it’s my head. My actual one.”

“Well, it looks just like your head, but you do know it’s not real, is it?’

“It is real. It’s got my glasses and everything.”

“OK. Whatever you say.” 

I decided to capitulate over the decapitation before I got a headache. An actual one.

Video is Goldfrapp - Lovely Head

Saturday, 19 October 2013


The day began well for some of us, less well for others. 

I scored a lie-in, as the kids inexplicably decided not to get up until a reasonable hour.

My night shift-surviving husband, however (still wiping the sleepy dust out of his eyes as he surfaced just before midday) was greeted with the following zinger from me: “Hi, you have remembered we’re off on a girls’ lunch today, and by the way you’re taking your son to Jungle Jim’s play centre at 1 o’clock, luvyoubye.” 

It was a mum and daughter's meal out, no boys allowed, which we try to organise every few weeks. My son’s invitation to the wacky warehouse circle of hell had come after we’d arranged our trip, so the hospital pass to my husband give me the merest pang (actually, no, just a tiny ping) of guilt.

Meanwhile, we settled down for some civilised lunching. My girl polished off some hot olives. She demolished a salad. Her favoured tabasco-soaked Virgin Mary was slurped. As usual, the spices were as hot as my daughter’s anticipation, but there was one difference today: a special guest.

The VIP was pint-sized, and not exactly loquacious, but captivating company all the same. Looking at her gave me a Proustian rush rushy enough to make my head spin. My daughter was fascinated with her.

Her name is Scarlett, and she's nearly six months old. She has Prader-Willi Syndrome, just like my 15-year-old daughter. Her mum and me recently met for the first time through that ‘friend of a friend’ coincidence thing that happens online occasionally.

Sometimes it’s hard to remember what my girl was like as a baby. How helpless she seemed, with her floppy muscles and uncertain future. How beautiful and terrifying she was. I wish I could head back there with some white spirit and dissolve the fear that coated my feelings like sticky gloss paint. I wish I could have had a sneak preview of this photo: a teenager in pink jeans and matching lip gloss, holding a PWS baby, and beaming. I wish I could have seen her being so grown-up: offering calorie information and diet tips to Scarlett's mum; and asking a stream of questions about how her baby fed, slept, cried, and played. 

Just four girls meeting up for lunch. 

But it was so much more.

Thanks, Hannah and Scarlett, for a lovely day. Made even more lovely for Hannah, I'm sure, by the fact that in the same way I was swerving an afternoon in an indoor play centre, she managed to miss a kids' party with a clown. Oh God, Oh God, a CLOWN.

Video is Dexy's Midnight Runners - The Teams That Meet In Caffs

Friday, 18 October 2013


I didn’t know my daughter was legendary.

It was the hushed, reverential tones that got me. Her actions had been Talked About. And grown, exponentially, in the telling.

A few months ago, when she was in the midst of missing out on 71 hours of sleep in one week, she’d acted strangely at school. It culminated in a hugely uncharacteristic scene in a classroom where she turned over several chairs and upended a table, before her teacher held her in a very loose restraint hold.

Thankfully there was no repeat of this behaviour as we spent the next few months getting to grips with the whys and wherefores of her sleeplessness (see previous post, Stabilisers).

But, as usually happens in schools, word got around. 

The table-turning incident occurred in Josie’s satellite class at mainstream school. Nothing was damaged, apart from my nerves upon hearing about it. The special school where she is technically a pupil is half a mile away, and separate. And yet, when I went to a fundraising coffee morning there recently, and started chatting with one of my girl’s former classmates, who didn’t make the move with her to the mainstream satellite class, he began to quiz me about it.

He buttered me up first by asking how my daughter was. But he soon cut to the chase.

“She trashed the school, didn’t she?” he asked, his voice filled with awe.

I opened my mouth to deny this, stung by the idea that the kids had somehow heard about what happened and built it up into a school-wide, havoc-wreaking rampage, when - as upsetting as it was at the time - it was more of a small-scale, localised, rumpus.

But then I looked at his happy face. He was frankly thrilled at the idea that his sweet-natured, quiet, ex-classmate had turned into Godzilla, and I didn’t want to disappoint him.

“Well...yes. Yes, she did, a bit.”

Don’t judge me.

Song is Feeder - Godzilla

Sunday, 13 October 2013


My daughter’s wobbly bike ride through life hit some serious potholes earlier this year.

We’d had bent spokes before, and the odd puncture, but nothing like this.

She started suffering bouts of destabilising sleeplessness. In the worst throes of it, she span out of control, with jittery and agitated long nights of freewheeling, followed by days where pedalling was too much effort.

The medical investigations started. An MRI ruled out anything like swelling on the brain. An EEG, the results of which took an age to turn up, has finally confirmed that she isn’t suffering seizures.

In the meantime, a neuro-psychiatrist diagnosed the problem as a mood disorder on the spectrum of bi-polar. Lamotrigine, a mood-stabiliser, was prescribed.

Now, two months later, the bike is back on track. It still won’t travel in a straight line, but then it never did. Its rider is happy again. Fitting the stabilisers has brought our daughter back to us: with all her funny little ways, her shy smiles, her meandering chats and occasionally clunky gear changes. 

She’ll never pass the drugs tests for the Tour de France, though.

Charles Wright - Ninety Day Cycle People

Related Posts: 

Friday, 4 October 2013


You know those great nights, with your best mate, when you meet up, catch up, slap on some make-up and sequins and hit the town? (Any male readers with a previously undisclosed love of make-up and sequins, feel free to come out in the comments below).

Well, that’s the kind of night my daughter had tonight.

Today, she was 15. We bought her what she really wanted - all £8.99 plus postage and packing of it - an Animagic Sleepy Time pony, that cries, whinnies, slurps and snores, a bit like me after too much gin. We organised the night she really, really wanted: a trip to the curry hut, a film on the home cinema, and a sleepover with her friend Bethany.

The usual Prader-Willi Syndrome provisos applied: her Indian was appropriately low-fat, her poppadoms and chutneys strictly rationed, her Hello Kitty birthday cake slice swapped with a portion of Nanna’s legendary non-sugar fruit cake.

The film she chose, Marley & Me, had her and Bethany transfixed, although both displayed somewhat autistic hearts of stone as they remained stoically unmoved by the dead dog ending.  “I’m not crying,” my girl announced. “I’m not either,” nodded Bethany, in agreement. “I’m very grown-up, though,” my daughter felt the need to add. “Me too,” came the echo.

They’re upstairs now, both decked out in Hello Kitty pyjamas - my girl’s ones (a birthday present) slightly too long in the leg, Bethany’s a faded, favourite, old pair, way too short for her now she’s grown about six inches in six months. 

They’ve done a reasonable job with the deep cleanse wipes and left themselves with only faintly mascara-smeared panda eyes. They’ve taken the pink braids out of my daughter’s hair, grabbed their cuddly toys, and hit the sack, the boxing glove of sleep knocking them out before the referee had chance to ask for a clean fight.

Apparently we're watching the One Direction Live Concert DVD and Mamma Mia in the morning, so help me God.

Sleep tight, girls.

Video is Kathryn Williams - Heart Shaped Stone,  from her beautiful new album, Crown Electric.  I wanted to use the song Sequins, from the same LP, but I can't find a video. You're just going to have to buy the album, if you want to listen to it. Which you really should...