Saturday, 18 July 2015


We’ve all done it. You know, turned up to a Mormon Church Hall riding an inflatable horse.

Another entry into The True History Of The Drake Gang was written today, when our little family posse begged, borrowed, and Amazon Primed our outfits for a Prader-Willi Syndrome party with a rootin’ tootin’ theme. 

My girl met up with some jeans-wearing gene-sharing buddies with the same chromosome disorder as her. They did some colouring in then tucking in, all the while striking up and rekindling their shy, little friendships. 

My boy behaved impeccably, by which I mean he impeccably re-enacted the horse punching scene from Blazing Saddles. 

There were a few no-shows, so the party was under-populated compared to previous years. (Anyone who didn’t send their excuses will be rounded up, coralled, and forced to eat humble cow pies). 

But it didn’t really matter. My cowboy and cowgirl were happy, as was my sombrero-sporting husband, Sleepy Gonzales. 

Best of all, I discovered the cooling delights of having air-conditioned lower portions thanks to the fan inflating my horse’s arse. 

Yee, and indeed, haw!

Video is Kirsty MacColl - Don't Come The Cowboy With Me, Sonny Jim


Yesterday was my girl’s last day in school uniform.

My wonky wonder has finished Year 11 and will be returning to the Sixth Form in September. Her dad told her to burn her tie; he’s helpful like that. “No, Mum, I don’t think I want to.” My boy’s ears had pricked up: “I do!”. “No-one is burning anything,” I declared.

Later, I looked through the pile of schoolbooks and artwork she’d brought home with her. There were photos galore of her and her little band of classmates. They have wildly different needs and foibles, but they’ve needed and foibled along as a team this year, thanks to the patience and skill of their teacher and teaching assistants. 

Now, it’s time for a new chapter. And, God help us, some sort of carefully negotiated clothes rota.

Video is Inspiral Carpets - Smoking Her Clothes

Saturday, 4 July 2015


It was a simple enough day out: a train ride, a short stroll, a picnic, and a lunchtime Daylight Music gig at The Union Chapel, in Islington.

The timetable was set in my daughter’s head; she knew what was happening and when it was happening - vital for a peaceful trip with a Prader-Willi teenager.

And I was proud of her. She coped with unexpectedly busy trains around Finsbury Park (OK, my 'meticulous’ planning somehow missed the fact that thousands of exuberant teenagers would be amassing for the Wireless Festival). She remembered to clutch her straw cowboy hat firmly to her head whenever trains whooshed past. She only piped up a couple of times with an anxious: “It’s not too loud, is it?” during the gig. And she didn’t feel the need to stick her earplugs in, which as musical criticism goes, is high praise indeed.

We bumped into a music buddy of mine, Mike, who sat next to us as we watched an exceptionally talented (and, I couldn't help noticing, rather buff) man from Amarillo called Rodney Branigan sing whilst playing a guitar and a mandolin at the same time. My girl confided in Mike that she and Mummy thought he was handsome. “Do you think he’s good-looking?” she asked; Mike had to agree.

And then we saw Piney Gir, a Kansas-born, adopted Londoner who comes a close run second to Taylor Swift in my daughter’s Best Pop Stars list. Piney could have been upset at not being her Number One, but I think she managed to shake it off. Her bright, melodic brand of vivacious indie pop was perfect on a day when the sun streamed through the windows of the church, kids danced in front of the pews, and my girl concentrated fiercely on her songsheet as the audience joined Piney and her band in a rendition of Woody Guthrie’s This Land Is Your Land.

“I like the Gold song best,” my daughter informed her heroine shyly, as we said hello after the gig. We took a smiley picture. It’ll be going up on my daughter's photo wall of fame, in exalted company next to Cesc Fabregas. I thanked Piney for sending us an advance signed copy of her new album in time for my daughter to get to know the songs before the show. She patiently signed a tote bag my girl had chosen as a momento from the merch stall. Noticing people buying copies of the new CD, mR. hYDE'S wILD rIDE, my daughter looked slightly disappointed: “Is it out now? Can ANYONE just buy it?”

She went to bed at quarter to seven. Kernickity knackered, but happy. 

When the sun came shining, and I was strolling,
The wheat fields waving and the dust clouds rolling,
A voice was chanting, and the fog was lifting,
This land was made for you and me.

Songs are: (above) Piney Gir - Gold Rules (*'the Gold song')
                (below) Piney Gir - This Land Is Your Land

Friday, 3 July 2015


I had that warm, tingly, sun on your face feeling.

I’d just watched my girl running - yes, technically, definitely, sort of running - down the track for the sprint race at her special school sports day. She was at the back of the pack but she was having a real go.

Minutes earlier, I’d stood back, amazed at her bouncing along in the sack race, her cheeks reddening from the effort. I got flashes of her beautiful grin as she shot sidelong glances and giggles at her dad: a middle-aged man with sticky-up hair, wearing flowery shorts, shouting out "Boing! Boing! Boing!" as he pogoed along beside her.

Special school sports day is always fun. One of my daughter's classmates, having been told he could dress as his favourite sporting star, came as Kevin Pietersen in full cricket gear, pads and helmet and all, which I can attest makes the long jump a challenge.

I even got involved myself, as part of an impromptu and rather hefty parents team in the Parents v Staff Tug Of War. Victory tasted sweet. An estimated 30 stone team weight advantage had nothing to do with it, I tell you. It was all technique.

It was my second sporting foray of the day, having already taken part in the mums' race at my boy’s sports day earlier the same day. I’d seen my opportunity to cause him burning shame, and I’d taken it, because he’d been a little sod all week.

He watched as I had galumphed up the track, trailing in the wake of several mums who were younger, fitter, and - as my own mum would quaintly put it - less ‘booby’ than me. I’d adopted an unusual running style: the ‘right hand clutching right nork, left hand clutching left nork’ technique* (*first pioneered by Dolly Parton when she forgot her sports bra for track practice. Probably). It had seemed apt to protect my assets (coincidentally encased in a Tony The Tiger ‘They’re GGGGGGRRRREAT!’ T-shirt) as I needed way more jiggle-proof scaffolding than that provided by my standard M & S bra.

I walked back over to see my boy sitting on the ground next to his dad with his hands over his face. “Brilliant!” I thought. “I’ve really embarrassed him.” But no, the ‘hand-bra’ style had passed him by, possibly because he was watching from behind the start line and had only been able to see the back of me. No, his hands were not hiding his shame, they were suppressing derisive laughter. “You came last, Mum. You’re RUBBISH.”

Yes. Yes I was. But at least I didn't have sore jugs and two black eyes, and I consider that a victory, even if nobody else does. 

Song is Lonnie Mack - The Bounce