Tuesday, 30 October 2012


I’m a big girl.

When I say big, I mean chunky, and when I say chunky, I mean fat, and when I say fat, I mean international rugby prop forward levels of heft, which is not particularly acceptable for a woman who isn’t in the front row of anything, let alone the England First XV.

I have a daughter who has a genetic condition that means she never physically feels full up. We have to keep her on a carefully controlled low-fat diet in order for her to maintain a healthy weight.

The irony of me being fat is not lost on me.

I’ve never been skinny. My weight has gone up steadily over the years as my levels of exercise and intake of booze and late night cheese on toast has increased. I lost three stone a few years back when I took up running (or rather lolloping) and trained for a half-marathon. And last year I had a month or two of getting back into good habits, and shed a few blobs of blubber, but ran out of enthusiasm, got lazy again, and piled the weight back on.

There’s no excuse. I cook and eat healthy meals for the family (because my daughter’s Prader-Willi Syndrome has meant I’ve always had to). But working from home has increased my tendency to graze, I eat too many snacks late in the evening, my adoration for beer has become ever more unseemly, and I really have become a stranger to my trainers.

Now I’ve reached tipping point. The point where I’m in danger of tipping over in a faint when I read the dial on the scales and wonder: “Is that why they’re called bathroom scales? Because I seem to weigh the same as a bathroom?”

So I’m doing what I need to do. Eating less. Not drinking alcohol. Moving more. You’d probably recognise me if you bumped into me in the street: I’m the fat bird who has wet hair, goggle indents around her eyes, and an aroma of chlorine. Easy, boys, I'm taken.

It’s working. I’ve shifted a stone in five weeks. The weight loss will get slow and steady now, and after I’ve shed a bit more I’ll supplement my swimming with dry land-based activity - once I've established a rapprochement with my running shoes. 

I’m feeling fitter, happier. And don’t worry, I realise that someone else's fitness regime has very limited scope for entertaining blog entries. So I won't mention it again unless it produces an amusing anecdote, such as me being unable to find my sports bra and consequently giving myself two black eyes whilst out jogging. 

I just wanted to put down a marker. 

Video is Easy Star All-Stars - Fitter, Happier

Video is The Chemical Brothers - Galvanize

Monday, 29 October 2012


There’s something I often say to my daughter.

I say it when she can’t grasp why her brother isn’t interested in watching the 1993 TV movie version of Heidi with her. Or why her cousins enjoy running round a muddy field doing cross country. Or how not everyone likes chilli pickled onions.

It’s a simple phrase, trite even: “Everyone is different.”

I use it when she compares herself to others. When she was at mainstream school and started worrying how her classmates were on higher reading levels than she was. When she asks me if she’ll have periods. When she thinks my taste in music is “rubbish”. When she wonders why she talks more than an autistic boy in her class, or why she’ll never have children.

I’m reinforcing the message that being different is OK. Having Prader-Willi Syndrome means she isn’t the same as her cousins or my friends’ kids, but then why would she be?

And when I talk about difference, I take care to include PWS. Because as much as there are certain issues that always loom large with her syndrome, everyone with Prader-Willi is also different from eachother.

It was explained to me once in a very effective way: the ‘symptoms’ or ‘characteristics’ of PWS are all lined up like a graphic equaliser. To anyone who is annoyingly young, this was a row of sliders you used to get on hi-fi systems, each one used to adjust certain frequencies in the sound you were hearing (eg to whomp the bass up enough to make your heart thump). 

With PWS, this switch is marked hunger, this one learning disability, this one speech, this one mobility, this one social skills, this one skin-picking, this one stubbornness, this one emotional maturity, and so on. Just like a graphic equaliser, the levels can be set at maximum, minimum, or somewhere in the middle. Some of them are stuck, and no amount of WD40 will budge them. Some of them you can nudge up or down slightly with a bit of effort. One thing is certain: although people with PWS to a large extent share many of the same characteristics, these can vary wildly because their frequency sliders aren’t lined up in the same way.

Everyone is different.

Video is R.E.M. - What's The Frequency, Kenneth?

Monday, 22 October 2012


My daughter is really looking forward to her first alcoholic drink.

It may be four years until her 18th birthday, but her understandable fascination with rules about what she is and isn’t allowed to consume has meant that this topic occasionally comes up.

“You can have a drink on your 18th birthday, sweetheart,” I told her, during the latest discussion. “But you must remember that alcohol has a lot of calories, so you can’t drink it all the time once you’re 18. It’ll be a treat.”

She nodded, sagely.

“What are you going to choose for your drink, then?” I asked, expecting her to say “beer” or “a glass of wine”. She didn’t. Her answer was a little more left-field.

“When I’m 18 I’m going to have a Bloody Mary.”

I laughed, then choked as I managed to suck some tea up my nose. But she wasn’t finished.

“And a Black Death.”

“Er.. .I’m not sure I’m familiar with Black Death,” I replied, trying to remember where I’d heard the name before.

“Oh, it’s a very spicy chilli beer. It’s too hot for you, Mum.”

So there you have it: vodka and tomato juice with Worcestershire and tabasco sauces; and a chilli-laced chaser. Strictly hardcore, my daughter.

Song is Goldblade - Strictly Hardcore

I would, at this juncture, like to point out that Bloody Marys and Black Deaths do not usually figure highly in our family’s alcohol intake. These are drinks that our daughter has seen us have only once, ever, I believe. Little did I realise they were being logged in her database for future reference. It could have been worse, I suppose. There was that one time I had a Long Slow Comfortable Screw Against The Wall...

Thursday, 18 October 2012


Oh, good.

Yesterday, an issue arose at school. (See previous post, Sex).

As soon as I spoke to my daughter’s teaching assistant this morning, she got one of those ‘light bulb above the head’ expressions. She said she thought she knew when it happened: she remembered noticing a boy sitting next to my daughter on a playground bench outside at lunchtime, and a trio of giggling girls sitting on the next bench. She went over to ask if my girl was OK, and she said she was fine. The lad sidled off looking sheepish, and she asked my girl again if everything was all right, again getting a happy little nod.

He was a sixth-former, who really should have known better. 

My daughter’s teacher, who had a small amount of steam escaping from her ears at this point, assured me she would make sure the boy was identified.

“We may even have him on camera,” she said. (Yay, Big Brother Society!) “I’ll speak to his head of year.”

“Brilliant,” I said. “Anything that makes him squirm would be good.”

“Oh, yes. He needs to be embarrassed. We might need to over-egg things a bit and mention the fact that he made these remarks to a minor, just to put the wind up him a bit more, don’t you think?”

I collected my daughter from the school gates this afternoon and learned the following: The ‘comedian’ has indeed already been given a dressing-down by the head of sixth form. Along with the reprimand, he is having to write a letter of apology. He may also be visiting the special unit that my daughter attends, to learn a little bit about some of the conditions the pupils have, and also to make him feel embarrassed and hopefully guilty about his little ‘prank’. I’m really quite happy about this, as it all sounds generally humiliating.

And my girl? Unaware of today’s goings-on, she’s not mentioned the incident. She’s now watching Beauty & The Beast and will soon be tucking into a plate of pasta arrabiata for tea.

I like the way today turned out. The issue was immediately taken seriously by school staff, dealt with quickly, efficiently, and even inventively, and I’ve gone from feeling angry to being impressed. 

All in all, a rather good response to teenage twattery.

Video is Madness - Embarrassment


Oh, blimey*.
(*Warning, Mum, subsequent exclamations may be swearier).

My daughter sat at the tea table tonight, and asked: “What is sex?”. Her dad caught my eye and answered quickly: “Your mum will explain it.” I believe this is what’s referred to in rugby as a hospital pass. You know - when you catch the ball but don’t have time to catch your breath before a big bastard flattens you.

The thing was, though, that this wasn’t just an innocent query. What I initially thought was a bit of teenage curiousity from a sweet girl who doesn’t know what most 14-year-olds think they know about the mysteries of fornication and procreation, was a little more alarming.

We had a little talk as she was having a bath. And it turned out that a lad at school had been having a bit of a joke at her expense. At least that’s what I think happened, and I’m going to try to get to the bottom of it by having a chat with her teaching assistant tomorrow.

“This boy, he was nice, he came to sit next to me when I was finishing my drink at lunchtime, and asked me if I would be his boyfriend,” my daughter said.

“Girlfriend, I think he probably said,” I corrected, before asking: “Who was he? Was he one of the boys in the special school classes or was he a mainstream pupil?”

“Mainstream. I said yes. Then he asked me if I’d have sex with him. So I said yes. That means we’re boyfriend and girlfriend, doesn’t it?”

Once I’d recovered my cool and managed not to blurt out one of the expletives running through my head, I quizzed her about exactly where she was, who was around, whether an adult would have heard, whether the boy’s mates were nearby (possibly giggling), and I think I understand what happened.

I think the ‘lad’ (and I use that in the pejorative sense) may have been dared by a friend to get my daughter to say something they could snigger at.

Teenage boys are idiots, I know this. But I’m mad at this particular one for a couple of reasons. Firstly, my daughter is quite closely supervised by a teaching assistant at lunch and breaktimes, so he must have been quite sneaky to manage to hold this conversation with her without an adult realising exactly what he was saying. 

Secondly, if it happened like she described, he was taking advantage of her learning difficulties and her lack of streetwise smarts to make fun of her and laugh at her.

Thankfully, he hadn’t upset her, because she didn’t realise this. On the other hand, the effect it did have on her broke my heart a little bit. The conversation actually had made my daughter happy, because she thought it meant that he was her boyfriend. (The “he was nice” bit is making me go boggle-eyed, gnash my teeth and think violent thoughts).

So I held a difficult conversation with her, kneeling on the bathmat next to a wide-eyed child surrounded by soap bubbles. As delicately as I could, I explained that sex was something natural and nice that happens between two people who love each other. I even included a small amount of anatomical detail about a willy (I know, I know) going inside the woman’s bits (I know, I know). “Oh, is that where the man gives her the sperm?” she said, surprising me by remembering a pertinent point from sex education classes, and making me feel like a numpty.

“Yes, sweetheart. But it’s something that adults do, not children. And you can get in trouble for doing it when you’re under 16. Plus it’s much better to wait until you’re grown-up and you really love someone. It’s normal and healthy but it’s private. When that boy was talking to you about it, he was being a bit silly and rude about it because sometimes that’s what boys are like.” The bastarding bastardy little bastard, I thought. “I think his friends were trying to get you to say something you didn’t really know was rude. I think they dared him to do it and he was being a bit of an idiot. But you’re not in trouble, because you didn’t know. And there’s no point worrying about the silly things some silly boys do, is there?”

She took in all this information and reacted astonishingly well. (By not asking me if Daddy puts his willy in Mummy for a start). After more matter-of-fact discussion, we agreed on the best thing to say to that boy, or any other one that came up to her and wanted to talk about anything like this again.

“I’ll hold up my hand, Mummy, and say: ‘Stop!’ You shouldn’t be talking to me about this, it’s wrong. I’m going to tell an adult,” she said solemnly. 

She clambered out of the bath, and I wrapped her up warm in her dressing gown before  she happily pottered off for her Cadbury’s Highlights hot chocolate and a listen to a couple of tracks from her Hannah Montana Movie Soundtrack CD. She seemed absolutely fine.

I breathed a sigh of relief. And thought about the conversation I will have with her teacher tomorrow. Where I’ll suggest they see if they track down Mr Lets Get The Special Needs Girl To Say Stuff About Sex, put him on the spot, give him a right ticking off, and embarrass the hell out of him.

Then maybe stuff a firework up his lily-white arse.

Song is Super Furry Animals - Sex, War And Robots

Wednesday, 17 October 2012


My daughter’s teacher had a quick chat with me yesterday, on a MOLF (Matter Of Life and Food)* 
*This is my own acronym. I’m not going to bother trademarking it.

MOLFs occur at school regularly, of course. Her special school unit has inventive and practical ways of learning, and some of these involve food, which is always an important Matter for someone who has Prader-Willi Syndrome and is consequently EFOF (Extremely Focused On Food)* 
*Note to self: enough of the acronyms. They're getting ruder.

One example of a school MOLF was the tasting of a selection of small pieces of fruit in science to learn about different flavours and how to describe them. Another involved putting small amounts of different puddings in a shot glass to create some form of dessert-based strata, to learn about layers in rock formation, or something. Sounds good, doesn’t it? It was all dull drawings of Oxbow lakes in my day...

Forewarned is forearmed, and staff are always careful to check with me about what my daughter is allowed to eat. She is on a strict low-fat diet and has a set amount of food each day at set times, so I need to know about any additional grub that may mean I need to make some menu adjustments.

Usually, anything they do consume is in small enough quantities for me to just make sure she has a particularly low-calorie afternoon snack to balance things out.

This latest MOLF is a little different, though: a trip out for lunch at Café Rouge. “We’re going to send a letter home, but we thought we’d pre-warn you,” her teacher explained. 

“That should be fine - she can just have that as her main meal of the day, and her packed lunch for tea, instead,” I said, making a mental note to keep reminding my daughter of this fact so that she will have the meal order switch-around clear in her head. “I’ll have a look at the menu...” I continued, but was interrupted by my excited girl.

“It’s OK, mum, I’ve already seen it, and I can have the pasta with tomato and courgette sauce, because that’s healthy and doesn’t have fries, and for afters I can have the fresh banana and chilled custard.”

I’ve just looked it up myself on the restaurant’s website. She’s right, you know. She got the  exact wording of the menu options she’d chosen. And picked the lowest of the low-fat choices herself. What could have been a long, drawn-out process of negotiation, explanation, compromise and mental preparation turned out to be pretty simple. 

Which left both her and me feeling like the custard: chilled. Dude.

Video is Squeeze - Cool For Cats

Saturday, 13 October 2012


We all judge people. We might not admit it, but every day when we walk down the street we make assumptions and snap judgements about the people we see, purely on the way they look.

It’s kind of amusing, especially when you consider that many of us are far from perfect physical specimens ourselves. That doesn’t stop us. It’s human nature.

In just a split second, we look at a person and label them, instinctively. The way people dress, their hairstyle, their body language, or their body shape, gives us an instant shorthand into who they are, where to slot them in our brain's filing cabinet. People’s weight does come into this: there’s a certain appropriateness in referring to this process as ‘sizing people up.’

If we glance at an obese child, we’ll probably then glance at their mum or dad, and derive an odd satisfaction if they’re obese, too. Because it means we’re right when our brains have flashed up words and phrases like CHIPS...CHOCOLATE...NO EXERCISE... It confirms our prejudices. So we can’t be a bad person for having those prejudices, then, can we? 

After having a child with Prader-Willi Syndrome, I’ve trained my brain to think a little differently. If I’m honest, I do still subconsciously make instant judgements, because that’s how we’re all wired. But I consciously try to overthrow them, because I’ve learned that things aren’t always as simple as they seem.

That child, the one that’s obese? They might have a condition that requires them to be on steroids. They might be recovering from an operation that means they can’t exercise. They  might have a disorder like.....oh, let’s pick Prader-Willi Syndrome, shall we?...which means they’re constantly physically hungry and their bodies cannot convert fat to muscle efficiently.

The point is, you don’t know. When you look at someone, you don’t know their medical condition, their life-story, all the factors and influences and reasons and elements that have built them into the person they are. Don't assume. Don't presume. 

Mind you, that bloke with the spiderweb tattoo on his face and LOVE and HATE inked on his knuckles probably has been to prison.

Video is Prince Buster - Judge Dread
Related post: Gillian

Tuesday, 9 October 2012


I don’t mention my son an awful lot on this blog, because this is my daughter’s space. My space to make sense of our life and her condition. And when I do mention the little bugger I tend to give him a bad press. (Yes, I realise, referring to him as a little bugger may be perpetuating this).

He’s nearly four. He’s a stubborn, silly, bundle of energy. He’s very cute, and he knows it.

Today, I suddenly came down with a bit of a bug. I had chills, and they were multiplying, as John Travolta might say. I felt hot one minute, and shivery the next. I had a thumping headache and a sore throat. So I headed to bed to wrap myself in my duvet and feel sorry for myself.

My boy, playing downstairs with my husband, took a while to realise I was gone. When he did, he padded up the stairs looking for me, and climbed up onto the bed.

“Why are you in bed, Mummy?”
“I don’t feel well. I’m really cold, and I’ve come to bed to get warm and feel better.”
He tipped his head on one side. “I’ll be back in a minute,” he said.

After a few clonks and crashes (presumably toys and books falling on the floor in his bedroom), he clambered up on the bed with me.

“Here you are, Mummy. It’s my red blanket. So you won’t be cold.”

This was a very kind and sweet thing to do, and I felt a surge of pride at his thoughtfulness.

“You can have Teddy, too, Mummy.”  

This was almost too much. I seemed to have something in my eye.

Then a mischievous look came over his face and he picked up his beloved teddy bear and placed it close to my face.

“He just pooed on your head.”

Video is Arctic Monkeys - Teddy Picker

Sunday, 7 October 2012


A small troupe of girls with baby-soft feet left my house this morning.

Turns were taken in the foot-spa; a takeaway curry was consumed; Disney’s Enchanted was watched; a Hannah Montana DVD game was played; airbeds and sleeping blankets were squashed up together; pink pyjamas were worn; and whispers, giggles and serious amounts of chatting were heard until just before midnight.

My daughter's birthday sleepover was the kind of night I thought she would never have. It was the kind of night where I couldn’t stop smiling at her smile.

Video is Nina Simone - Feeling Good

Thursday, 4 October 2012


My daughter is 14 years old today. The floppy baby who couldn’t move, or feed, and who we thought might never manage either of these things on her own, is FOURTEEN.

We were numb when our brand-new, little girl was diagnosed with Prader-Willi Syndrome. We thought she’d have an awful life. We thought we’d suffer with her. We wished things could be different. We wished it hadn’t happened to us.

I thought about this last night as I watched her painstakingly typing away on my computer, fervent and wide-eyed, shouting spelling queries over her shoulder at me as she searched the internet for cool stuff to buy with her birthday money (which I pointed out she hadn’t actually received yet).

I could never have imagined her being capable of this. This delicious slice of normality. Admittedly, I didn’t think it quite so appealing when I had to practically drag her off the chair in order to get her to have a shower before bedtime, but let’s skate over that, shall we?

This morning, although her excitement and anticipation levels were sky high, she refused to get up early to open her presents. The sight of a girl who is ravenous for her breakfast waiting in bed until exactly 8am every school day still amazes me. When she was little, she used to pad into our room demanding food at 5.30am: really, painfully, properly, physically hungry.  The hunger is still there, but currently her own self-enforced timetable is unbending. She has got the 8am school day reveille set in her head and somehow, the ‘stubborn’ slider in her brain creeps up to max, just loud enough to muffle the ‘hunger’ track.

At 8am precisely, the family piled into our big double bed, her brother ‘helped’ with the removal of paper, and her presents were unveiled. We had, under strict instructions from our daughter, bought her a foot spa. The road to bubbly foot heaven had been rocky, especially when I realised that the EXACT model that she wanted (because she’d used one like it at Girl’s Club at school) was discontinued. Weeks of repeated explanation, negotiation, and exasperation, had finally seen an accord reached. She would be happy with the squareish pink and white one from Argos as opposed to the previous roundish pink and white model* (*My eyeball is doing a poppy-out thing right now, and I’m clenching my fists tightly enough to crack walnuts, but honestly, I didn’t find this drawn-out, repetitive, painstaking process too stressful...)

So I held my breath as she ripped off the wrapping paper, and examined the long-awaited foot spa closely. "It is the right one,” she agreed, smiling, her clasped hands quivering with excitement. I exhaled, relieved.

I’ve just taken her to school, and handed in Weight Watchers cake slices for her and her classmates to have at the end of the day. We’ll be having her three grandparents round for tea and more presents, later, when candles in a no-sugar fruit cake will be blown out. On Saturday, she’s having friends over for a takeaway curry (low-fat tikka), a film, and a sleepover.

She's such an amazing bundle of contradictions: grown-up in some ways, childlike in others, predictable, unfathomable, strong, vulnerable, amenable, defiant, and wonderful. She's our daughter. Just look how far she’s come.

Video is Laura Marling - Oh Mama How Far I've Come
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