Saturday, 22 February 2014


“Whatever you do, don’t turn on your windscreen wipers. He’ll snap them off if he sees them move,” I warned my friend Jo. 

The monkey, who’d already broken the aerial of the car in front of us, was now warming his behind on the bonnet of her car as we edged along through the primate section of Woburn Safari Park. He turned, spotting the kids munching their sandwiches in the back seats, and pressed his nose against the windscreen, licking his lips. “Quick, lean forward and I’ll take a picture of your face next to the monkey’s,” I instructed, and Jo grinned, moved her head, and somehow managed to set off both the windscreen wipers AND the water squirter with her ear.

I started giggling uncontrollably at her horror-stricken face as the damp ape stared at her in surprise. She scrabbled to turn off the wipers on her car. (Did I mention it was her new car, which she’d only had three weeks?) Luckily, the now spiky-haired monkey took the water-cannoning in good grace. He raised a weary eyebrow, shook his fur, and hopped onto the roof, settling down on the sun roof directly above me. There followed a brief moment of excitement as my five-year-old son yelled with unambiguous glee: “That monkey is going to have a poo out of its BUTT right onto your HEAD.” Being told that poo cannot travel through glass seemed to greatly disappoint him.

And so it was, as I sat in the shade of a monkey’s butt, that we returned to the main debate that had been raging in the back seat for the previous half an hour. “I want to go HOME,” my boy announced, for the umpteenth time. (He’d been very excited about seeing Jo’s son, his little mate Magnus, who was sitting next to him. Magnus was slightly perplexed by his friend's lack of enthusiasm for the tigers, wolves, elephants, giraffes, and rhinos we’d already seen, but he didn’t realise what I did: my son had got into his head that he’d be playing at Magnus’s house, not going out on a trip. Home actually meant his friend’s house). “I want to go HOME. I don’t want to go to the ZOO," he demanded. My daughter stepped in, again: “We can’t go home. We are at WOBURN SAFARI PARK. We are at WOBURN SAFARI PARK having a nice time at WOBURN SAFARI PARK!” Her Prader-Willi Syndrome habit of repeating herself over and over again was being given a good run for its money by my non-PWS son’s stubborn impatience, and she was obviously taking it as a personal challenge.

I caught Jo’s eye. “This is what visiting places is like with these two is like,” I explained. “He gets bored quickly and wants to go somewhere else and run around. And she starts to worry that we'll leave, and reassures herself by saying the name of where we are a hundred times.”


“Welcome to my world,” I whispered to Jo. The giggles set in again. 

Song is Toots & The Maytals - Monkey Man

Sunday, 16 February 2014


A Shakespearian drama has been playing out at our house today.

The heroine is an obsessive teenage girl with Prader-Willi Syndrome, who decided to save up her pocket money for a set of children’s versions of famous William Shakespeare plays. 

The villain is a butter-fingered warehouse stacker or slapdash courier driver who didn't treat the package with the reverence it deserved, leading our eagle-eyed protagonist to notice a small dent on the corner of the set’s slipcase.

This is the daughter who can extemporise for hours on the tiniest fold on the page of a library book. Naturally, the thought of an ever-so-slightly bashed-in corner is dinging around her brain like a perpetual motion pinball. 

I'll give you a quick taster: “It’s dented, isn’t it? Why is it dented? It is new, isn’t it? That is a dent, isn’t it? It’s dented.”

Trying to ignore the fact that my brain was mischievously transposing this to: “Is this a dent I see before me? The squished bit towards my hand?", I sat her down and had a chat with her about how it’s the stories that are important, and that a small imperfection shouldn’t matter. (Yeah, I know, I know, it's like a metaphor, right, for her chromosome disorder, isn't it? Well, yes. Or maybe it's just a dent that's really annoying her.)  Well, we had a chat, and I'm sure I got through, and I'm convinced that she took on board all my points, which were clearly and patiently explained. 

Yes. Yes, I am sending it back for a replacement.


It was no surprise when Shakespeare, and dents, came up in conversation around the Sunday dinner table, later.

We did have a random pop star thrown in, just to particularly bamboozle the easily-bamboozled Grandma.

My daughter (once she’d methodically hoovered up every last scrap on her plate, of course) declared: “I like Shakespeare. My box is dented. I like Romeo & Juliet. Can you see the dent, Grandma? It’s on the corner. I like Shakespeare. I like Michael Jackson.”

Classical music-loving Grandma looked perplexed. “Michael Jackson?”

“Yes, he did Thriller.” My daughter rushed the words out a little, so it was a bit hard for Grandma to catch what she’d said.

“He did what? He did Othello?”

Now I had an entirely new image in my head. Michael Jackson, as The Moor, declaring his love for Desdomona (looking suspiciously like Bubbles the chimp, in a dress), clutching a box of books. A box with a dented corner. 

Track is The T.S.U. Tornadoes - Getting The Corners

Tuesday, 11 February 2014


“I don’t care! I love it!”

A 6ft 2in, built-for-comfort-and-not-for-speed heterosexual man, dancing around the kitchen waving a wooden spoon whilst singing along to Icona Pop, is a sight to behold.

This 5ft 5in, even-more-overly-upholstered heterosexual woman found herself compelled to join in, having also been captured by “the feeling on a summer day when you were gone”.

Our silly dancing ended, and, slightly breathless, we turned to the dining table, to see our daughter looking at us. I’m trying to think about how best to describe her expression; ‘underwhelmed’ doesn’t cover it, because there was no question of her approaching anything remotely resembling a whelm.

Our teenage daughter, who is sometimes so unlike most teenage girls, gave us a pitch perfect teenage look of disdain, and turned her head, to concentrate on her custard. We were reduced to helpless giggles. 

And this is the real story, isn't it? Here were her mum and dad, doing a ridiculous dance to a pop song she loves (the radio edit version, without any shits or bitches, obviously), but she just wasn’t interested, because she has Prader-Willi Syndrome, and food is the be-all and end-all, and she was having her pudding. Duh.

Video is Icona Pop - I Love It. This one has got the shits and bitches in it. I realise this because I've just played a snippet and my daughter has admonished me as she walked past. "Mum, when you are on YouTube, can you please put on the clean version of that song." That's me told.

Monday, 10 February 2014


My daughter isn’t autistic, but then again, she is.

When disability, learning difficulties, and special schools are part of your everyday life, you tend to hear the phrase “on the spectrum” quite often. Now, because of my age, this always makes me think of someone sitting playing Lunar Jetman on a plasticky ZX computer. But what it usually refers to is the autistic spectrum.

Prader-Willi Syndrome is a disorder which is not a subtype of autism. But it is associated with it, because it overlaps in some ways. And we had a classic autism overlap today, when a man broke into our car.

This isn’t as alarming as it sounds, although it was alarm-sounding. The helpful chap was from our breakdown firm, who we’d called out after our car (in a Skynet, Terminator, Rise Of The Machines type way) had decided unilaterally to lock itself up and not allow us in. Apparently it was a latch failure, although I believe it may have been the first step in Kia’s evil plan to take over the world. Presumably the Machiavellian Kia robot hive-mind will be working to achieve the overthrow of the human race within seven years, as it will still be covered by the warranty.

Anyway, armed with what I believe is technically known as a small balloon thingy, and a long, metal, hook thingy, the car thief, sorry, car entry assistant, managed to get in and we were able to drive the sodding C'eed to the garage to be repaired. Under the evil warranty.

The only thing was, I’d told my daughter the night before that a recovery lorry might have to tow it away. So when her dad collected her from After School Club, she quizzed him eagerly on the day’s exciting developments, and demonstrated how she just cannot put herself in someone else’s shoes and logically realise what they must have been thinking. If she knows something, then why would the other person not know it? 

“Yes, the tow truck did come. But they didn’t need to use it, because the man managed to open the door anyway.”
“Did he bring the lorry?”
“Yes, but he didn’t need it.”
“So why did he bring it?”
“Well, he didn’t know that he wouldn’t need it.”
"But he didn't need it."
"Yes, but he didn't know that."
“Why didn’t he know?”
“Because he hadn’t looked at the car yet.”
“So why did he bring it, if he didn’t need it?”

That’s it. That’s our girl's “on the spectrumness” in a proverbial nutshell.

Song is Dee Dee Sharp Gamble - Breaking And Entering

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Saturday, 8 February 2014


You can’t win if you fight a disability head on.

It’s like being in a scrum with a front row that’s bigger, heavier, and uglier than yours, and that isn’t afraid to play dirty.

It can be a war of attrition (as rugby commentators love to say). Sometimes, you need to be a bit sneaky. Turn yourself into a scheming little scrum half, nipping at their heels, stealing in for an interception. And sometimes a running move just happens, when your team breaks through their defence thanks to a lucky pass, and all you have to do is stand back and marvel at it.

I’m all over this rugby analogy for two reasons. Firstly, it’s the Six Nations, which I always enjoy. Secondly, rugby was behind a Momentous Happening yesterday.

Anyone with kids will probably have experienced their incredible dedication to the witholding of information about their schoolday.

“Did you have a good day? What did you do?” is a question that even a Guantanamo Bay interrogator who the Chairman of the Waterboarding Committee thinks is a little too heavy-handed couldn't get an answer to.

Yesterday, I asked my daughter for a daily update, expecting the usual non-committal grunt, or the classic: “Don’t know,” which runs a close second to “Nothing much.”

Instead, I got this: 

“We had a man come from the rugby club. He was called Martin, and he gave us a rugby ball and a pen and a wristband, and I asked him if he knew Uncle Mark, and I told him Uncle Mark’s surname and he said he did know him and he’d be seeing him tomorrow and he would say hello and say he’d seen me at school, and we played some rugby and I had to catch it and throw it and run round, and he said I was a fast runner, but I don’t do running, so I was a fast walker, and he said that if I didn’t want to play rugby then I could take my little brother along if he wanted to go, so can we take him Mum, and I loved it and it was good and he showed me a picture of Uncle Mark and the other rugby men dressed up as Father Christmas, but I knew it was Uncle Mark and they weren’t the real Father Christmases because there were so many of them and they dress up every Christmas and collect money for little children who are poorly, and I had fun and I love my rugby ball, it’s squidgy.”

I couldn’t have been more surprised at the torrent of detailed information than if she’d picked me up and spear-tackled me. Why the visit from Martin the rugby man appealed to her so much, I’ll never fathom. And on another week, on another day, it might not have inspired such enthusiasm. With Prader-Willi Syndrome, you can never predict when the person will be thrown a perfect pass and be able to get over that try-line, smiling as they place the ball between the posts.

I had to go for the conversion, though, didn’t I? I asked my boy the same question. “What did you do at school today?” He gave me an nonchalent stare. “Nuffink.”

Video is The Streets - Let's Push Things Forward