Thursday, 30 April 2015


P.E. has always been a minefield. I don’t mean that children at my daughter’s school play football on a minefield, that would be insane. Although it’d liven up Sports Day, wouldn’t it? 

No, I mean minefield in the sense of it being problematic. Over the years, as my girl has grown, her enthusiasm for partaking in physical education at school has covered the gamut of emotions (the gamut ranging from half-hearted to non-committal).

I understand this. Not because I was a serial PE shirker - quite the opposite. I loved sports at school for one simple reason: I was good at ’em. And that’s the crux of it, right there. If you’ve got good hand eye co-ordination, are strong, and reasonably fit (yeah, yeah, all right, well I was then, honestly), then sport is fun. Playing hockey, netball, tennis, rounders, etc, is enjoyable and invigorating (apart from the time I ran into a goalpost and nearly knocked myself out, and yes I realise this belies my earlier point about co-ordination).

But when you’ve got Prader-Willi Syndrome, and you’ve got poor muscle tone, and your brain takes a little while to process information, and it takes you forever to get changed, and you can’t keep up with everyone, and you can't catch very well, and you don’t like running about, and you get cold easily, and you’d rather be inside doing some colouring - then P.E. sucks.

When my daughter was at mainstream primary, the older she got, the less enthusiasm she displayed. We regularly had the P.E. day stomach ache. We occasionally had a P.E. day tantrum. The school reports euphemistically told us that there was ‘room for her to improve her participation levels’. Start actually moving about, in other words.

When she transferred to a special school, things improved slightly, as she realised she was no longer the ‘worst’ in the class. She was still Eddie The Eagle, but there was a little nest of other fledglings flapping about with her.

But it was when we moved house and my daughter transferred to her current school, that she really got off the blocks. Her P.E. teacher cottoned on to some of the little tricks required to motivate her. My girl had decided that she ‘didn’t do running,’ so when learning tag rugby or playing indoor cricket, she was told she wouldn’t have to run, she could do ‘fast walking’. The pace and the instructions were less frenetic and pitched at a level that didn’t overwhelm her. Her confidence improved, her stomach-aches vanished, and P.E. stopped being a Problem Everytime. She’s no Usain Bolt, but she doesn’t look like she’s bolted to the floor any more. 

And now, to my utter astonishment, my sports-averse, non-running, fast-walking daughter, has voluntarily joined Sports Zone, a local Saturday morning disabled sports club. 

So forget wildcard Goran Ivanisevic winning Wimbledon in 2001 (and stripping to his pants to celebrate when he returned to his home town in Croatia, although that’s a image that’s etched rather endearingly to my memory); forget Germany beating Brazil 7-1 in the 2014 World Cup semi-final; in fact, forget every sporting upset or surprise ever. This one trumps them all: my girl has chosen to do P.E. Out of school hours. At her own insistence. 

If only I’d laid a bet on that...

Video is Spoon - The Mystery Zone

This post first appeared in the April edition of PWS News, the newsletter of the Prader-Willi Syndrome Association UK. They have a very informative website here.

Friday, 24 April 2015


I’m not sure any of us was quite ready for it, but my daughter shared some knowledge with us at breakfast-time today.

My six-year-old boy was just pulling his pants up after visiting the toilet. We’d been treated to the sound of him weeing for an unfeasibly long time after he'd left the door wide open in a “Were you born in a barn?” kind of way, before he padded back into the lounge and announced his willy was “sticking out like it had a bone sinking into it”.

This was the opportunity his sister seemed to have been waiting for. She was all about the willy facts: ““Oh, yes, that’s quite normal,” she told her brother, in a sage-like voice. “Boys get that, you know, especially when they’re teenagers.”

My boy looked startled, and a little impressed that his big sister seemed to know what had been going on in teeny todger territory. And she was ultra keen to expand upon her knowledge of his expansion (obviously having paid very close attention in her recent Personal, Social and Health Education lessons).

“Yes, you’ll find that you’ll be making seeds for the eggs and you’ll have sperm come out of your willy in your bed at night.”

I nearly choked on my cornflakes. My boy looked down at his pants frontage with amazement. 

I baled. “Time for school, everyone! Quick, quick, no time to talk, we’ll be late!”

Song is Mark Lanegan - Morning Glory Wine

Monday, 20 April 2015


She had no idea what his name was. But she could see he was a pig. And a pirate. And that deserved a hug.

My daughter was feeling friendly yesterday, which was more than could be said for me, having attended a hen do the day before. A family trip to Gulliver’s Land - a theme park with numerous spinning rides - was not an ideal destination for a mildly-hungover, middle-aged woman, but I went with the flow. Queasily.

Pirate Pig was a cuddly highlight for my girl, as was the Pirate Ship, which made me turn a whiter shade of pale even when I was merely adopting the get out guise of Official Photographer.

The day was dizzying in more ways than one. A large part of the afternoon was spent painstakingly going through the reasons why the rides had notices on them saying they weren’t suitable for people with back conditions. And my daughter's circular conversation revolved more reliably than Gulliver’s Giant Teacups:

“Do the notices mean I can’t go on because of my back operation?” 
“Well, you have had a back operation because of your scoliosis, but what did Dr Gavin say? No rollercoasters or rides that were very jerky, but smooth ones are OK, aren’t they?” 
“But what about the notices?” 
“Well, it’s up to Mummy, because I know what Dr Gavin said, so you’re fine to go on this one.”
“So it’s OK?”
“But what about the notices?”
“That’s so people don’t sue.”
“What’s sue?”
“Blame the park for hurting their back.”
“Will it hurt my back?”
“But what about the notices?”

I managed to snap her out of it with the timely distraction of drink and snack time in Lilliput Land Castle (otherwise known as ‘the café’). I, for one, felt much better after a cuppa. Not so good after sitting in an unidentified sticky foodstuff on the café chair. And definitely not great after a go on the Flying Texan Boots. 

As for the Twist 'n' Joust, I don’t want to talk about it.

Video is Alela Diane - The Pirate's Gospel 

Sunday, 12 April 2015


The surprise was sprung.

My husband’s 50th birthday - a surprise house party, organised and executed with military precision and cunning - was a blast. And he didn’t suspect a thing, which is a minor miracle considering the kids were in on the secret.

The Tesco lorry delivered Oliver Reed Approved quantities of alcohol on Wednesday, all of which was duly stashed in a neighbour’s garage. I sneaked off for a buffet run to Costco on Friday, squashing the chilled stuff in my mum’s fridge before heading home, whistling innocently. I then cooked an enormous chilli that evening, calmly telling my bloke that I was going to ‘batch freeze’ some meals for us. (Enough to last 'til Christmas, if that had actually been true!).

My brother-in-law and family were ‘just visiting’, and we’d hatched a plan where we told the birthday boy we were all going out for a curry at 7.30pm (emphasising that our daughter had been duly primed and was suitably accepting of the adjusted meal and snack times, as it was Daddy's special birthday curry. We didn't tell him that her condition for accepting the subterfuge was that we would absolutely, definitely, indisputably, have a curry on Sunday night instead). 

Why didn't he and his bruv pop out to our local for a couple of pints beforehand? “Yes, Daddy, you go to the pub with Uncle Kevin,” suggested smallest child, smiling sweetly. POTUS (Poor Over-trusting Totally Unspecting Sod) concurred, they went, and it was all systems go. 

We had one hour for everyone to arrive, get tables and extra chairs set up outside, transfer booze across the road in a fireman’s chain, blow up balloons, stick up banners, unload food, and pour out the fizz for the toast - all before we got the call from the pub loos from brother-in-law saying: “The Eagle has landed, I repeat, the Eagle has landed.” (not a euphemism for his toilet activity - rather code for “We’re coming back”).

“He’s HERE!” yelled my boy, on lookout alert at his bedroom window. I opened the front door, bustled my husband in, to see his jaw drop as he was startled by a houseful of people yelling “Happy Birthday!”

My daughter, the one with Prader-Willi Syndrome, the one whose condition overlaps in many ways with autism, the one who finds it hard to put herself in someone else’s shoes, had not given the game away. This was the truly astonishing thing about the whole complicated charade. 

“I nearly told Daddy this morning, Mummy,” my girl told me. “But I remembered it was a surprise.” 

I looked at her, in her sparkly sequinned dress, with her sparkly nails and sparkly eyes, perfectly happy with her specially selected plate of healthy party food, chatting non-stop to our family and friends. 

It was my daughter, yet again, who had provided all the real surprises.

Video is Sparks - A Big Surprise

Friday, 3 April 2015


Highlights of the first week of the Easter Holidays:

I took my 84-year-old mother-in-law to an Alzheimer’s Society Cognitive Stimulation Group, where it turned out one of the other attendees knew her. 
“That’s nice,” I burbled to her on the way back. “You know, that the chap Steve knew you.” 
“Well, I do know him, but I can’t for the life of me remember where from.” 
“Oh well, that doesn’t matter.” 
“No. He’s an obnoxious sod, anyway.”

I played ‘I Spy’ in the car with the kids on a shopping trip this morning. 
“I spy with my little eye, something beginning with t.p.” (I was thinking of telegraph pole).
My son wrinkled his eyes up with concentration. “I know! A titanium turbo pig!”
“What on earth is a titanium turbo pig?”
“They’re a pig, and they have slidey snot missiles and blast fire out of their butts that can melt through titanium.”
“Oh, of course. Of course they do.” 

We watched the Disney film Maleficent, a reworking of the Sleeping Beauty tale, told from the point of view of the wicked fairy Maleficent.
It’s a knack, finding movies that both my 16-year-old daughter with special needs and my 6-year-old boy with special smart arsery can both watch and enjoy. But this seemed to fit the bill. Things were going well until about half way through when I got a two pronged attack from the sibling squad.
My girl suddenly recognised the whole ‘being pricked by a spinning wheel’ scenario as bearing similarities to the Sleeping Beauty fairy tale. But she found it completely impossible to see how the tale was being told from the point of view of another character. 
“It’s not Sleeping Beauty, it can’t be, because it’s not the same. But she’s Sleeping Beauty! But she can’t be! Mum! It isn’t, is it? It is, isn’t it?”
Meanwhile, my boy was cogitating. He’d seen how Maleficent was betrayed by her childhood friend, who chopped off her wings in order to gain power and become king. He’d watched as the embittered fairy took revenge on the kings’ armies, controlled forest creatures with her magical staff and performed amazing feats of sorcery. 
“Huh.” He crossed his arms, suddenly unimpressed. “That’s stupid. I don’t see why she doesn’t just magic her wings back.”
I did a spot of quick thinking. “Ah, well, the one thing that magic can’t do is magic fairies’ wings back.”
Which was OK. Apart from the fact that 45 minutes later...her wings got magicked back.

“MUM!” “MUM!” I got the backlash from both of them in unison. “YOU SAID......!”

Song is Geneva - Temporary Wings