Tuesday, 31 July 2012


My daughter is undergoing her own Olympic challenge in the hope of earning a medal.

It doesn’t involve running, swimming, or leaping about in the sand while Benny Hill music parps away in the background.

I didn’t just dream that, did I? Music being played at the London 2012 Beach Volleyball event has included Boots Randolph’s Yakety Sax, hasn’t it? I’m expecting the gold medals to be presented by a small, bald man, who will be ritually slapped on the head by the winners, before all of them chase each other round Horse Guards Parade.

No, my girl’s Summer Olympics challenge is a more literary one. She joined the local library’s Holiday Reading Scheme on the first day of the six week break, and has had her nose stuck in a book ever since. 

The challenge is to read six books. This will earn her some stickers to stick on a little folder, and a certificate. But it doesn’t stop there: if she reads six more she’ll get more stickers and a wristband; and if she reads six more, she’ll get the ultimate prize - a medal.

And she can’t resist - she wants the lot. So that’s 18 books she’s got to get through. No mean feat, because even though she reads well, she reads very carefully and slowly. And she is also particularly fussy about picking stories that aren’t “too easy” for her. So my suggestions of shorter books with bigger type have been shot down with withering glances. 

I feel like a coach, on the sidelines. Expectations are high. All of our training is paying off. We’re three down at the start of the second week, so this is medal pace. I’m not going to make her pee in a bottle (although, thinking about it, we’ve got a hospital appointment on Thursday, so actually I am going to). I might have to conveniently lose the results of that drugs test. I have a feeling her daily injection of growth hormone may be against Olympic Reading regulations.

The hopes of a household are resting on you, sweetheart. We’ll be cheering you on.

Video is Boots Randolph - Yakety Sax

Video is The Stranglers - Peaches (Yes, this was also played at the Beach Volleyball, presumably for the line: "Walking on the beaches looking at the peaches". Women's sport, eh? Eh? *rubs thighs* *stops rubbing and gets depressed about 'ironic' sexism*)

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Tuesday, 24 July 2012


“The Aggregation of Marginal Gains”. That’s the mantra of Dave Brailsford, the man behind British cycling successes of recent years. 

It’s how GB cyclists came home from Bejiing with sackloads of gold medals, and how Bradley Wiggins carried his facial hair faster than anyone else did across the three week long superhuman endurance test known as the Tour de France...

It sounds a bit pants, to be honest. It sounds like management speak. Like ‘blue sky thinking’ or ‘multi-agency partnerships’ or ‘running the topic up the flagpole to see who salutes it’.

Despite this, it makes perfect sense to me.

Mr Brailsford may have applied the theory to making men and women on bikes go faster. But the idea of tiny margins of improvement making all the difference on the home strait also applies to bringing up a disabled child.

Don’t worry. I’m not about to don lycra leggings, clutch my stopwatch and force my daughter out of bed at 5am in the morning to do chin-ups.

I’m just talking about small victories. Miniscule achievements. Little things that go well, and that start to add up and make all the difference.

Like persuading my daughter to walk the short distance to drop off a form enrolling her in a holiday club today. It was a hot day, she wasn’t keen, but I managed to talk her into it, and we strolled along in the sunshine, and I turned the conversation round to how her new walk to school in September is about the same distance and how it would be lovely to walk instead of take the car, and how grown-up she’d be if she walked like her cousins, and before I knew it she was agreeing.

It’s only a short walk. It’ll only burn off a few calories. But it’s a difference. A one per cent difference. A marginal gain. And when you need to control the weight of a person with Prader-Willi Syndrome, whose body doesn’t convert fat to muscle efficiently, and who has to be on a strict low-fat diet, despite feeling constantly hungry, these little one per cents count. It’ll help her get a little bit more exercise. If she walks to school all week, then she can have that one extra treat.

The aggregation of marginal gains. My girl and Wiggo, both.

Song is Kraftwerk - Tour De France

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Friday, 20 July 2012


It's the last day of the school year.

It’s been a good one for my daughter.

She’s grown up a lot. She’s coped with being in a class of boys and learned to stand up for herself. She’s marched into the classroom and announced that her “spoilt brat” of a brother kept her awake until 9.49pm playing with his toy bin lorry. As her teacher relayed this little speech to me, it was the precise time that made us both giggle the most. She’s managed a few jogs along the PE track, despite announcing she doesn’t “do” running. She’s been away on a PGL holiday and enjoyed it so much she didn’t want to come back. She's been on stage as CinderellaShe’s made a friendShe’s never, not once, said she didn’t want to go to school.

We’ve just got a neat pile of new uniform for the autumn, when she’ll be heading to her special school’s satellite class at the nearby mainstream comp. She can’t wait.

All this may sound mundane, but it isn’t to me. I remember when she was diagnosed with Prader-Willi Syndrome as a baby and her muscles were so weak it seemed like she'd never walk, or talk, or have any kind of proper life. I look at her shyly twirling around in her new PE kit and I think how far she’s come, and it amazes me. I've seen it happen, but it still amazes me.

She’s already badgering me about buying her a new schoolbag and packed lunch box for September. I refuse to take for granted the everyday, humdrum stuff like this. This is what life is. What I once thought it couldn't be. It's glorious.

Video is Sigur Rós - Hoppípolla. I have no idea whether the lyrics are appropriate or not. It just feels good.

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Saturday, 14 July 2012


It’s pelting down with rain today, but I’m still basking in the sunshine of Californ-i-A.

I watched my daughter strike surfing poses on a cardboard surfboard this week. I sat there with a big, stupid grin on my face as she and her schoolmates did ‘The Swim’, and yelled out the chorus of The Beach Boy’s Surfin’ USA so loud that thousands of palm trees fell off Hawaiian shirts all over the world. I tried to stop my camera from shaking with laughter as the deputy head appeared clutching a rubber shark and chased them off the stage.

The song was part of her special school’s summer production: “The 12 Days Of Summer” - the much-awaited follow-up to a legendary version of Cinderella that still makes me smile when I think of it, seven months later.

This week’s evening and matinee shows (by volunteering to take photos at one and film the other, I wangled myself two tickets) were cut from the same theatrical cloth, the basic ethos of which is: “Everyone has a go, bung ’em all on stage, and let the organised mayhem ensue”. Somehow, my girl's 'costume' (shorts and T-shirt) were mislaid backstage before the evening show, which - miraculously for someone who struggles when things don't go to plan - didn't seem to bother her. Quite how her teachers had talked her down from this potential catastrophe, I don't know. But they obviously had. 

The kids, from little ones clutching teddy bears to big hulking teenagers, and from energetic dancers to those in wheelchairs, were all included - whatever their abilities. They did a performance of Singing In The Rain waving cardboard umbrellas. One young pupil was allowed, upon his enthusiastic insistence, to spontaneously grab the microphone and tell a completely unintelligible story. It was greeted, to his delight, with rapturous applause. 

The teachers and teaching assistants were right in the thick of it. One male teacher continued his growing obsession with wearing drag, appearing in both a lollipop lady and a Mary Poppins outfit. A female member of staff, who I had previously thought was quite strait-laced, whirled about the stage in a hippy outfit in a performance that can only be described as astonishing. Another, taking part in a beach scene, was perched on a deck chair with Dame Edna glasses on, reading a book that with a quick zoom of the camera lens was revealed to be Fifty Shades Of Grey.

Thursday evening’s performance came after a two day Ofsted inspection, called with the customary two days notice, during the week before the end of a long, tough term. The head told us the school had received a ‘Good’ rating. I wish the Ofsted inspectors had stayed to watch the show. All they needed to do was watch the pupils’ faces as they interacted with the staff. All they needed to do was to witness the care, attention, patience, encouragement, and love on that stage and in that room. Their highest grades aren’t good enough for this.

Oustanding. Bloody well outstanding.

Video is The Beach Boys - Surfin' USA. You are just going to have to indulge me. As you can see, they found her fetching pink and yellow outfit in time for Friday's matinee.

Tuesday, 10 July 2012


My daughter used to wear a cast covering her torso. She had a series of moulded, rigid body braces, which attempted to slow down the curvature of her spine.

But the scoliosis got to the stage when it could be alleviated no longer, and the huge spinal op that doctors had been putting off finally went ahead. The cast was replaced by some titanium scaffolding inside, and the body armour was thrown on the scrapheap.

But she was encased, night and day, for nearly a decade. 

Sometimes I feel constricted, too. Having a daughter with a disability that you cannot change, a condition you cannot cure, a hunger you cannot satisfy, is a different kind of straitjacket. You can battle, and struggle, and fight, and the straps only tighten. It's not always easy to breathe.

But sometimes I escape. When she achieves things I never thought possible, when she surprises me with her thoughtfulness or humour, and when she is purely, uncomplicatedly happy, I can feel the clasps unlocking and the straps loosening.

She’s in a school production at the end of the week. She’s helped me do a Houdini again.

Video is The Kinks - Set Me Free

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Thursday, 5 July 2012


Big changes are afoot.

I’m sitting at my computer screen looking at a school uniform page and staring at my old school tie. And there is a distinct possibility that I’ll be ordering one for my daughter.

She goes to a special school which is based on two different sites, half a mile apart. They used to be separate schools but were merged a couple of years ago and now operate, under one name, as a primary and secondary site. The school also has a couple of satellite classes at the local comprehensive, next door to its secondary site. And this week an interesting idea has been raised. My daughter might be heading to the comp.

This came as something of a shock, and my initial reaction was negative. For the past few years we’ve been convinced that a special school is the right place for our girl to be.

These are our reasons:
  • She thrives in a special school environment is because of the small class sizes and individually-tailored teaching and learning methods
  • She can’t keep up with the speed, pace and nuances of social interaction, so the mainstream environment could overwhelm her 
  • She needs constant supervision at lunch and breaktimes to make sure she doesn’t eat anything that is not on her carefully controlled diet
  • She is under that vulnerable category of “otherness”, which could make her an ideal candidate for bullying. And she’s not even ginger. 
So, I’ve been for a recce at the mainstream comp, walking past the Sixth Form Common Room where we used to plan all sorts of escapades, and catching a glimpse of the running track where I once took a pig on a sponsored run.* (*long story, never mind). The satellite classes are essentially in a separate unit, although they are contained in the main school building. It’s a micro-school within a massive school. To all intents and purposes, it’s still a special school - it just happens to be located somewhere else.

And after conversations with the teachers and teaching assistants who know my daughter well, and some sleepless nights (well just look at the time I’m posting this stream of consciousness) I’ve come to the following conclusions:
  • The class size in the special unit at the comp will be half as big as at the special school site, and my daughter will learn at her own pace, using teaching methods that suit her 
  • She’ll be protected from the wider mayhem of a mainstream school by full-time supervision from staff 
  • If anyone bullies her, one - or all - of her three cousins who go to the school will beat the shit out of them.  

Video is The Ramones - Rock 'n' Roll High School

Monday, 2 July 2012


My mother-in-law likes a bit of classical music. Quite what she thought when her son grew long hair and got into Mötorhead, I'm not sure.

It was her birthday, and we'd bought her a DVD of a performance of Verdi's Requiem. We put it on, deciding to give our new surround-sound speakers a bit of a blast. The volume was turned up to 'rattle the windows' level, and the sounds of the double choir and orchestra swelled around the room. It sounded immense.

The door was flung open. My daughter marched in.

"Grandma! Have you any idea how loud that music is? Turn that down!"

And with that, my teenager left the room, tutting loudly and shaking her head at the irresponsible thoughtlessness of an 82-year-old woman.

Video is Verdi - Dies Irae (from Requiem)