Sunday, 26 May 2013


I'm not going to say this in a large font, because when I shot my typeface off about it last time my daughter launched into another bout of sleepless nights. So, lean in closer, squint a bit if necessary, and I'll tell you that lately she's been much more settled and has had a couple of weeks of quality slumber.

Each day, when I've gone into her room to pull the curtains open, I've been having a little sing-song, treating her to a burst of that jaunty little song from Singin' In The Rain:

"Good mornin', good morning, 
I've slept the whole night through, 
Good mornin', good mornin' to you!"

After a couple of days, she started to join in, and then yesterday she quizzed me about which pop star sang it. I told her it was from a famous old musical, and realising I had a DVD of it somewhere, told her we could watch it together later.

The screening began. All was going well, and she was enjoying the fabulous singing and dancing, and then we got to the bit with Gene Kelly, Donald O'Connor, and Debbie Reynolds in the kitchen, about to launch into our what has become our daily musical reveille.

"Here it comes - our song! This is it!" I said, grinning. But the smile didn't stay on my face too long. It began to slide, like a melting mudpack, as I listened to the actual lyrics...

"Good mornin', good mornin', 
We've talked the whole night through,
Good mornin', good mornin' to you.
Good mornin', good mornin', 
It's great to stay up late,
Good mornin' good mornin' to you."

I looked at my daughter as I realised the song I'd been singing to her about having a good night's sleep was actually about the complete opposite: staying up all night. Had she noticed?

I turned my head and she looked at me and raised her left eyebrow, in what can only be described as a withering manner.

"You changed the words, Mum, didn't you?"

Video is Good Mornin', from Singin' In The Rain

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Saturday, 25 May 2013


The newest chapter of the Hells Angels took to the streets today.

The Sons & Daughters Of Anarchy (East Bedfordshire Under 15s Division) let loose its two latest 'prospects', on a recce to the rec.

My boy was racing around on his new £10-from-ebay bargain bike (quickly picking up the pedalling technique and balancing required when utilising a tiny pair of stabilisers).

I used the opportunity to mention, casually, to my daughter: "Haven't we still got your trike somewhere?" The battered red three-wheeler had been gathering dust in the shed since our house move, forgotten about and unloved - but the idea of joining her brother on a biker rally had my girl asking me to fetch her Hog from the shed.

We bought it a few years back from the mum of a Prader-Willi Syndrome boy who was selling it because her boy had outgrown it. Ideal for someone with poor muscle control and balance, it gave our daughter the confidence and stabillity she lacked on an ordinary bike.

So out it came. Tyres were pumped, the saddle raised a little, and soon she was steadily and sedately sailing along on the tricycle, serene and happy alongside her fearsome-faced brother who was making machine-gun noises and yelling: "TURBO BOOST!" every five yards.

People with PWS need exercise to help control their weight, as their bodies cannot convert fat to muscle as efficiently as others. But they're stubborn. Really stubborn. So 'forcing' them to exercise is impossible. Sparking their interest, however, varying things up, and making them think the activity is their idea, works a treat.

I reckon the Mini and Micro Hells Angels will be burning a lot of rubber - and calories - this summer, which is fine by me. Just as long as they don't ask me to let them have Death's Head tattoos.

Clip is Steppenwolf - Born To Be Wild, from Easy Rider

Sunday, 19 May 2013


My daughter has pioneered and perfected a new propulsion fuel. It's a little unstable, but supply is effectively limitless, free, and there are no harmful emissions, unless an egg sandwich has been involved at any point.

It’s called willpower. 

Being born with Prader-Willi Syndrome means your muscles are weak. Everything physical is harder for you than other people. So from birth, when it came to getting about, my daughter was at a disadvantage.

It wasn’t a level playing field: when other children her age were crawling, she was still so floppy she was unable to sit up. And when she did finally manage it, they’d outstripped her efforts and were already walking. As she got older, she couldn’t tackle the steps leading up to a slide, or walk across that wobby rope bridge in the adventure playground, while her friends clambered like monkeys and raced around. She still needed pushing, when they were pedalling. She often needed rescuing when she became stranded on the top floor of the indoor play area (or the inner sanctum of hell, as I preferred to call it). Now she’s a teenager she can’t break into a sprint on sports day, do a somersault on the trampoline, or bound up the stairs two at a time and leap onto her bed in a strop.

But when I list the things she couldn’t and can’t do alongside her peers, it doesn’t fill me with sad memories.

Because I immediately think of another list. What pops into my head are the alternative milestones she fought to achieve. Like how when she couldn’t crawl or walk, she was still so determined to get around independently that she developed this amazing rolling technique, lying flat on the smooth wooden floors of our house. We called it the Runaway Sausage Roll; she could turn 90 degrees and be out of a doorway in an instant. Then there was the day she completed her debut lap around the park on her oversized trike. And the first time she she painstakingly wheeled herself up the hill to playgroup using her rollator (a kind of zimmer-frame on wheels) - her wobbly-legged, head-held-high gait a strut to behold. Let’s also not forget the astounding slow-motion climb up a mountain at Chamonix.

I’m recalling all this because she gave herself another turbo charge of willpower during a school trip to Warwick Castle, this week, when to the astonishment of everyone (and I’m sure to the brain-popping frustration of the poor buggers stuck behind her) she ascended, slowly but surely, 530 steps to the top of the castle ramparts.

The view must have been spectacular. It’s pretty good from here, too.

You were my heart-flower, 
My poetry, my song,
Just one look at you and then I knew,
On that day,
Serendipity smiled down at me.

Video is Asgeir Trausti - On That Day

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Wednesday, 15 May 2013


Last night, the BBC Two documentary series Keeping Britain Alive: The NHS In A Day, featured a 25-year-old with Prader-Willi Syndrome.

I’m not gonna lie to you (<--this sentence comes to you in a Welsh accent like Nessa from Gavin & Stacey), this was a tough watch.

We were introduced to Ciaran, a fiercely independent young man living in supported accommodation in County Antrim, and learned a little about the many challenges of his adult life since leaving home at 18.

There were, inevitably, a couple of scenes in the kitchen.

Ciaran makes his own meals, under the supervision of staff. Food is carefully padlocked away. His menu is pinned to the fridge door, as is his busy diary of activities and exercise. “I know my schedule,” he tells a carer, witheringly, when he informs Ciaran that he’s got swimming later. “It’s Zumba today. Zumba,” Ciaran explains, impatiently.

“If they didn’t lock your fridge, would you eat the food in it?” the film-maker asks him.
“No, I won’t. But other Prader-Willis would,” Ciaran replies. “If they overeat, they put on a lot of weight, then the wee heart stops and that’ll be the end of them. I’m still alive because I just watch what I eat,” he says, then adds, tellingly: “Sometimes.”

Things escalate when Ciaran is making his sandwich and salad and spots the soups as he is preparing his meal. He bustles around, getting a pan, to the rising alarm of the carer, who knows soup isn’t on today’s menu. Ciaran knows he knows, and when it’s pointed out that he shouldn’t be having the extra item, he loses it. “Go on, make a big fuss of it! Fuck away off! Fuck away off!” he yells, jumping up and down and clenching his fists with anger, the adult language jarring cruelly with the childish tantrum.

It’s difficult to watch, knowing of the physical reality of his hunger and the medical importance of keeping his weight under control.

We saw his mum visiting him and clearing up, checking for hidden food she suspected he might have slipped past the carers. She reveals his nickname of Houdini, given to him because of his magician-like skills of deception when it comes to obtaining food. 

“Can you sometimes be manipulative to get food?” Ciaran is asked.
He gives a wry smile. “If I was hungry. Yeah.” The disingenuousness of his answer brings the same wry smile to my lips. “Which, of course, is all the time,” is the unsaid coda of his reply, hanging in the air almost palpably.

Some things had me and my husband glancing at eachother with recognition: the way Ciaran walks down the stairs putting one foot on one step and the other on the same step, not on alternate steps like most, more co-ordinated people do; and his explanation for his smoking habit as “something I can do with my hands. I don’t like my hands just lying flat. It’s just the way I go.” Our daughter isn’t on the gaspers, thankfully, but is constantly wringing her hands and fiddling with small items. That’s just the way she goes, too.

The film-maker asks Ciaran another question: “Does smoking take your mind off the food?” 
“ Not really,” he says, puffing on his fag, dressed in his best suit, looking like a boy in the body of a man, wanting to be normal, wanting to be grown up, desperately needing his independence with a desire that seems almost as strong as his insatiable appetite.

His mum was great. We saw her love and concern for her son written all over her face and behind her teary eyes at one point, as she recalled the day he was handcuffed in an ambulance and sectioned in the secure institution after threatening college staff.

And then we saw his mum and dad walking along the seafront with him, chatting about what he’d been up to. Meeting up. Doing normal things. Being together. Being strong.

And the programme faded out to the thumping sounds of the Spencer Davis Group’s Gimme Some Lovin’, and a shot of Ciaran concentrating hard, decked out in his sports gear, as he stepped and hopped and waved along in his Zumba class. Zumba, not swimming.

It's been a hard day
Nothing went too good
Now we’re gonna relax
Like everybody should
And I'm
So glad we made it
So glad we made it
You gotta
Gimme some lovin'
Gimme some lovin'
Gimme some lovin' everyday

Video is The Spencer Davis Group - Gimme Some Lovin'

You can watch the Keeping Britain Alive: The NHS In A Day episode on the BBC iplayer (available until 24 May). Ciaran's appearances are at 06:56, 27:38, 48:57, 50:37, and 56:48

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Oisin (with a link to a fantastic radio documentary about an 8-year-old boy with PWS)

Friday, 10 May 2013


My daughter has achieved some great things in her 14 years on Planet Earth.

Despite the weak muscles in her legs, she learned to walk. Despite the weak muscles in her mouth, she learned to talk. Despite her constant hunger, she learned how food comes only at particular set times. (I’m not saying she likes this, but she has learned it).

And then there’s her instinctive savviness with technology.

When I was told my daughter had Prader-Willi Syndrome and was likely to have learning difficulties, I never imagined I’d sit and watch her Googling for her favourite TV character on a laptop. Admittedly, compared to other 14-year-olds - who are speedily updating their relationship status and sharing the minutiae of their lives in a flash on Facebleughrk - her keyboard speed is slow. She’ll painstakingly type out the seach terms by copying the title from a DVD or magazine. But she does it. She bloody well does it.

Even more impressively, she can also work our AV system, which is no mean feat, as it consists of more amps, boxes, and remotes than the average Richer Sounds shop.

She asked me a year or so ago how to put on a track through our Sonos system, which accesses the millions of choons on the Spotify streaming service. And she’s pretty adept at it, now. Watching her type in this week’s favourite artist, or the latest NOW album, and studying her face screwing up with concentration as she chooses and controls her own music still gives me a thrill every time. 

Well. I say every time. Not any more. 

Her intermittent night-time wanderings have sometimes pushed me to the very limits of my patience and understanding. But now it’s gone too far. She’s crossed a line. This morning, at 4.40am, she padded downstairs, and started playing the Mamma Mia soundtrack. 

Nowhere in the parenting manual, not even in the small print at the back, does it tell you how to cope with Pierce Brosnan caterwauling through the house in the early hours. Nowhere.

Video is The Phantom Band - The Howling. Well I'm NOT going to post Pierce. I'm suffering from PTYBD - Post Traumatic Yodelling Brosnan Disorder. It's hell. You don't know, you weren't there, man.

Friday, 3 May 2013


I’ve got a virtual suit of armour. It was forged during the long, wild, terrifying day when surgeons bolted titanium rods into my daughter’s spine. It resides in a box in my brain, where I can rummage around and find it when I am in need of a bit of protection. There are a few other crazy items in the cranium cupboard, including a sink plunger and rubber chicken, but I have no idea where they came from or what I might need them for. But the armour is fished out regularly, and I’m only just packing it away now after its second airing in the space of a week, during which time I became an indentured* knight.  (*Teeth. I’m going to talk about teeth, you see).

My daughter needs to have braces fitted, and this week she’s had two visits to the dentist in preparation, to have two lots of two teeth removed. And I had to sit there about three feet away whilst they stuck an enormous needle in her gums and pulled out a couple of teeth, plonking them in a little tray right next to me, the roots covered in blood. Then watch it all over again seven days later.

It wasn’t actually squeamishness on either mine or my daughter’s part that had me preparing to don my battle armour, though. Her syndrome comes with a high pain threshold, which sometimes is a Good Thing. Needles and blood don’t especially bother either of us. But I was expecting tears, tantrums, and a general mêlée (wasn’t that the name of the car in the Dukes of Hazzard?) - simply because of a number.

Over the last few months, as my girl has struggled to cope with her anxieties and emotions, she’s been turbo perturbed by the idea of having teeth out. Subtraction has been at the root of her root subtraction. She’s been worried by the idea of having less than 28 teeth. She loved having 28 teeth. That specific number. She likes to ask everyone else how many teeth they have, and a common sight if you watch her talking to someone is how quickly into the conversation she will persuade them to stick their fingers into their mouth and dutifully count up their pearly whites. 

And yet, a meltdown didn’t happen. I think a slight Eureka! moment a few weeks back when we saw an X-ray of her mouth where her wisdom teeth were visible may have helped. “Look!” I told her, grasping at the opportunity that had suddenly presented itself to me. “See those four ‘secret’ teeth there, that you don’t normally see, well, if you count them that means you WILL still have 28!”

Cometh, the hour, cometh the man, or girl in this case. We went in, the uprooting was done, and we went back in the next week and repeated the removal process. Not one word of protest, not one flinch, not one conversation expressing dissatisfaction or worry about the whole thing. 

I shouted out a checklist to her this morning before school.

“Got your bag?”
“Got your coat?”
“Got your teeth?” 

Well, she had to take them in and show them off, didn’t she?

Talking Heads - Pull Up The Roots

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