Saturday, 25 October 2014


The phrase ‘feeding frenzy’ is an interesting one. It usually comes up in two contexts: the first is when the tabloid media goes bananas over the latest celebrity scandal; the second involves sharks or piranhas. Just imagine if there was scandal about a celebrity who got eaten by piranhas - there’d be a feeding frenzy over a feeding frenzy...

Our life has included long, difficult, feeding frenzies that have nothing to do with Sun reporters or Great Whites. Feeding frenzies in a Prader-Willi household are a whole different thing.

For some PWS parents, they can be literal. They’re when a child gives in to their uncontrollable hunger and sneaks downstairs in the middle of night, and eats and eats and eats. The discovery of which ends in a frenzy of bolted doors, locked fridges, rage and tears.

For our family, the frenzy part has been more about us, the parents, than it has been about our daughter, the hungry one, who as yet has not discovered the illicit joys of night-time foraging.* (*Dear God, I mis-typed that and it came up with ‘the illicit joys of night-time Farage-ing’, which is possibly the most disturbing thing I’ve ever written).  

From the moment your child is diagnosed with a disorder that is so wrapped up in the issue of hunger and diet and overeating and satiety, you become frenzied about feeding. It’s fear, a fear that you will provide the wrong food, that you’ll fail to foresee temptations, that you’ll give them too much food, or too little, you’ll serve up things that are too fattening, or not fattening enough, that they’re missing out because you’re too strict, or that you’re making it tougher because you’re too soft.

You’re surrounded by it, enveloped by it, obsessed by it. And all the while you know that however much thoughts of food dominate your life (for eminently practical reasons), you’re a mere amateur compared to your PWS child. They really take the biscuit, if you’ll pardon the expression.

Your feeding frenzy isn’t constant, though. Just like the Government escalates and de-escalates terror threat levels from ‘substantial’ to ‘severe’ and back down to ‘chillax’* (*possibly), you learn to live with the idea that you have to supervise your child’s diet carefully and continually. You become so used to it, it becomes second nature, and doesn’t sit at the forefront of your mind all the blummin’ time. 

We’re lucky: our daughter, at the moment, despite being 4 foot 10 and half inches of stubborn, pretty much accepts the food rules. 

We appreciate this isn’t the same for everyone, and we know our frenzy levels may need to be raised to ‘ohmygodohmygodsweetmarymotherofjesusonaunicycle’ at any point.

But frenzies aren’t good for you, believe me. Whatever your circumstances, if there’s any way you can de-frenz, try your best. Food is a big issue. A huge, calorific, mountain of an issue. But it is only part of your life. And like all parts of your life, you will get it wrong sometimes, and other people will get it wrong sometimes, and do you know what? That’s OK. You’ll get by, with a little help, and less frenz.

Video is The Fall - Victoria (from the album The Frenz Experiment, you see). Thought I was going for The Beatles or Joe Cocker, dint'cha?

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

Tuesday, 21 October 2014


When I collected my daughter from After School Club, they said she’d been a bit upset after her and Bethany had mixed up their mummies. I didn’t quite understand: Bethany’s mum is about four inches taller and four stone lighter than me. It was only when I was handed a bandaged-up Pringle tube that I twigged it was Halloween decorations they were talking about.

My girl had dried her eyes, but they were still a little red. There was an almost audible buzz of anxiety around her. It was electrical. It hummed and fizzled throughout tea, and then it short-circuited at bedtime.

“I don’t know if that’s my mummy!” was the first wire to go kaput. A second strand came loose: “I don’t want to walk to secondary site, I’m too tired.” Another wire pinged: “I think it’s my sleeping mask, I don’t think I’m sleeping so well when I wear it.” 

I could see what was going to happen and I could do nothing to stop it. The delicate cable ties holding the bulging bundle of worry wires running through her head had snapped,  and that whooshing sound was her hot tears hissing on the escaping sparks of anxiety. I hopped into bed with her, squidged in tight, and wrapped my arms around her as she sobbed into my shoulder. 

“I don’t want to be Catherine’s friend she says wants to be mine but I’m not her best friend she wants to go to a different school next year will I go to a different school I want to go with her but I don’t want to my back hurts Mummy I get tired when it’s PE and swimming I want you to put the sleep mask in the bin cut it up but I want to keep it in my drawer I want to wear it I don’t want to wear it I’m not sure about the sleepover next week I don’t know whether I’ll be too tired to go but I want to go I haven't done my thank you letters yet can I do trampolining we’re going to do trampolining but what about my back I really don’t think that’s my mummy I want to wear the mask Bethany does can you ask her mum to tell her not to wear it because I don’t want to wear it that my mummy I can’t remember who bought me the till for Christmas was it the year before last why is it broken can you find out about Sportszone I want to go on the bus to After School Club on a Monday not walk did I sleep well I’m not tired I am a bit tired I’m hungry Mummy.”

I made soothing noises, tried to address each jumbled up worry, and then gave up. Nothing was registering. She needed to cry. I had to let her. I had to wait. Half an hour later she had cried herself to sleep. I felt like doing the same.

This morning, I walked into her bedroom and pulled back the curtains. She sat up, swung her legs round and planted her feet on the floor, rubbing her eyes, sleepily. “Good morning, Mummy!” We smiled at eachother. There was no sound of humming, or buzzing, or crackling. A good night’s sleep had reset her trip switch. And mine.

Video is Portishead - Humming

Sunday, 12 October 2014


Oh, I thought I was the bees knees, today. I was quite insufferably smug. You’d have wanted to slap me. You will, I’m sure, be pleased to learn I got my comeuppance. 

We were at Nanna & Grandad’s house. My daughter was very talkative, but tired from a long walk yesterday that had left her absolutely cream-crackered. The domino effect of which was a bout of loud, repetitive sentences from her today, and a steamroller approach to talking over everyone else.

Not for the first time, I posed myself the question: how can I get my girl to understand why it’s better not to interrupt other people?

And it was then I had a light bulb moment, or actually, an Alan Partridge moment, as the phrase “Ah-ha!” did pop into my brain. This was my chance. I was dying to put into practice something I’d learned this week - and here was my ideal opportunity.

I’ve been on a course, you see, on Communicating With A Child Who Has Social Communication Difficulties. It was part of a series of Parent Training sessions for people caring for children with an ASD (Autistic Spectrum Disorder). And this week’s module had included a section on Comic Strip Conversations. I thought these were very clever: in simple terms, you draw stick people, and use speech bubbles and thought bubbles, to help the person make sense of conversations and interactions. 

Out came the biro, background smugness levels were engaged and set to overdrive, and in the white space on the bottom of the Sunday paper I scrawled my matchstick men masterpiece. 

I followed all the rules: sit next to your child so you’re working together on understanding and making the drawing (rather than facing them, where you’re in a dictatorial position); make it personal and involve them in the details (“Should your hair be long? Shall I draw glasses on you?); and keep it simple.

I explained to my girl that she needed to wait until Nanny had finished talking before she started a new conversation. I used the picture to show what happened when she interrupted, and how all their words ‘bumped together’ so nobody could hear what anybody was saying. 

She stared at the scrawled drawing intently, and looked at me closely. I shot my husband a knowing, raised eyebrow, mildly triumphant, ‘aren’t I brilliant’ kind of look. I’d done him an example comic strip conversation earlier in the week to show him what I’d learned on the course and explain the principles behind the idea. “It’s called Theory of Mind,” I’d lectured. “People with Prader-Willi and autism and other disorders can’t grasp the Theory of Mind - how other people might have beliefs, desires, intentions, etc that are different from theirs; how other people don’t see things in exactly the same way they do.” 

This was a Comic Strip Conversation. This was me, putting it into action. This was me, showing my daughter how even though she wanted people to listen to her, they couldn’t because they couldn’t hear her when she talked over them. This was me, being awesome.

My daughter raised an eyebrow of her own. “Why did you draw this picture, Mummy?” she asked, smiling slyly at her dad, having clocked my earlier looks to him. “Is it that course you went on where people draw things for their children? Why are you drawing them for me?” She giggled. 

She hadn’t heard a word. She hadn’t been listening to my pleased-with-myself explanation of how interrupting someone makes it hard for everyone to be heard. She’d been completely, utterly, single-mindedly, focused on my motives.

Which kind of punctured the Theory of Mind theory. She struggles with putting herself in someone else’s shoes so often. Just not today, when I decided to show off my shiny, new, technique. 

Oh, I probably should point this out: the top drawing was the one I did for my daughter. The one at the top of the page.

Song is Sir Lord Comic - Wha'ppen. Everything is copacetic, man.

Saturday, 4 October 2014


The girls are tucked up in their beds, in a bouncy sea of airbeds, mattresses, and duvet sets featuring every known shade of pink.  Three teddy bear sleeping masks, the cause of much giggling when the girls tried them on earlier, are hanging up on the bedpost.

My daughter was 16 today. 

I swear there’s a sizzle in the air, from some of the moments burned into my memory today, like the ranch brand on the rump of a prize steer.

My daughter Skyping her cousin in Australia this morning, wringing her hands with excitement and pride that she was using her very own tablet computer.

Her first two emails on the device:
Hello Eve I got a tablet bit like a I pad I can email you more now. I can’t wait to see you later 
Hello manna [sic] it my birthday day eve and bethany coming later for going out for curry hut and film night and sleepover
Her arm, encased up the elbow in bangles, bracelets, and friendship bands, courtesy of her friend’s mum’s all you can grab trolley-dash raid in Claire’s Accessories.

My mum’s amazing Treasure Island birthday cake, complete with treasure chests made out of Milky Ways, and luminous blue jelly for the sea. And her low fat no-sugar fruit cake alternative for my girl. And the hours of work that went into them.

One Direction board game dares, including barking, moonwalking, robot dancing, roly polys, opera singing, and chicken impressions.

My girl, her PWS BFF (Prader-Willi Syndrome Best Friend Forever) and her AFC BB (After School Club Best Buddy) nattering on at the Indian restaurant; my daughter and her pal with the same unusual syndrome, her other mate with learning difficulties; all three of them together for the first time, talking to eachother, talking over eachother, all smiles.

Watching The Witches film, and being hula-hooped to a dizzying state by the circular conversations of: how witches aren’t real despite the characters insisting that they are; how if mice get squashed in a film, they’ve not really been squashed; and how Rowan Atkinson is an actor and is not actually Mr Bean.

The three amigas, jim-jammed up, squashed into the bathroom, cleaning their teeth. 

Oh yeah, and the guilt of thinking my seemingly malingering son’s ‘tummy-ache’ was rooted in jealousy. Said guilt kicked in like a mule at 3pm, when he was sick four times and had to retire to bed for the rest of the day.

I wouldn’t have changed a momentous moment. Well, apart from the sick bit.

Song is The Charlatans - Opportunity Three

Friday, 3 October 2014


Remember Club 18-30? The cheap package holiday people who welcomed binge-drinkers with open arms, and sold them budget bonking breaks where they were guaranteed to come back with letters after their names, just as long as those letters were STD?

Well, tomorrow, I’m joining the 16-24 Club. You won’t know what this is, as I’ve just made it up. I’m a long way past 24, an’ all. Let me explain.

Sixteen years ago today, I was packing a nightie and toothbrush into a bag. I was also checking the other bag that I’d been stubbing my toe on in the hall for a few weeks. In that one were sleepsuits, nappies, cotton wool wipes, and other babygubbins. The next day, October 4, 1998,  I was booked in at the hospital for an induction, to kick-start my tardy baby’s way into the world.

Twenty-four hours later, I was holding my daughter, forgetting the weirdness of an emergency Caesarian, and concentrating on the wonderfulness of thinking she was just damn perfect.

Another 24 hours later, I was craning my neck to see through the window of a door, where 10 metres away from my bed, on the other side of the glass, a paediatrician and his colleague were discussing my weak, floppy child. I was trying, unsuccessfully, to lipread, and at the same time knowing I didn’t need to. One look at their expressions and body language told me something was wrong with my child.

Twenty-four hours after that, I was parked by an incubator, shell-shocked, looking at the tubes and machines attached to my baby and not knowing what to think, what to do, how to help, why she couldn’t feed, why her muscles were so weak, what was wrong, what was happening, and when I would stop wanting to scream.

At the lowest, most awful point, when I thought she had brain damage and would never even be able to move, I had the worst thought imaginable (see blog post Secret). I was wrong. I was never more wrong and I never will be. 

The days became weeks. Some questions were answered, many were not, more were asked, and each day we tried to deal with what we had to deal with. 

We now knew our daughter had Prader-Will Syndrome. We didn’t know anything about it. Twenty four hours later, we knew too much.

The 24s continued. Twenty-four hours on, things might be different. Twenty four hours on, we might have a new challenge. Twenty-four hours on, we might have a triumph. Twenty-four hours on, we might have a new problem. Twenty-four hours on, we might have a laugh. Twenty-four hours on, we might be able to cope. Twenty-four hours on, she might smile. Twenty-four hours on, we might feel like giving up. Twenty-four hours on, it just might be a brilliant day. Twenty-four hours on, a meglomaniac double agent might try to assassinate the President and let off a nuclear bomb. No, wait a minute, I just went all Kiefer Sutherland on you, there, I do apologise.

Tomorrow, my baby is 16. When I fill out her PIP form I know I have to concentrate on all the things she misses out on and can’t do, and every pen stroke I make feels like a hateful betrayal.

But here, on this blog, today, every key I press on the keyboard feels GOOD. Beacuse I’m thinking of all the amazing things she has achieved: the rolling, walking, talking, laughing, growing, learning, dancing, loving, being. Being herself. Just that.

Tomorrow our daughter is 16. Tomorrow, she will astonish me somehow, like she does every 24 hours. We’re going for a curry, she’s having a sleepover. I’ll be up until midnight tonight loading up then wrapping up her tablet computer, and I can’t believe we’re here, at this point, with this life.

We’re going to light 16 candles and carry on taking things 24 hours at a time. Like we always have, and always will. 

That’s us. Club 16-24. We don’t penalise anyone for having extra baggage, and there are free Pina Coladas. Or at least a pint of Cobra and a stack of poppadoms.

Video is Joan As Police Woman - Holiday