Tuesday, 27 March 2012


My daughter announced a few days ago that she wanted to be christened.

She did this rather pointedly, in front of my churchgoing mum and dad. I would have struggled to get her to change the subject had it not been so close to tea-time. A quick: “What would you like in your sandwich, darling?” did the trick.

You see, I don’t really want to get her christened. Because I don’t believe in all that ‘magic being’ stuff, the idea of it makes me squirm.

We do do God in this house a bit. We talk about people going to heaven, even though I think it’s ridiculous, and my girl goes bananas for the story of the Nativity, but she’s a child. She likes God and baby Jesus, in the same way she likes Father Christmas, and I’m not mean enough to break the spell for her.

This makes me a hypocrite, of course. I fully admit this. I got married in church, not because I needed to declare my love for my husband in front of an imaginary omnipotent entity in the sky, but because I knew it would mean a lot to my mum. I said so in my speech at the reception, in fact, telling the guests I’d agreed to get married in church as long as Mum agreed to cook me Sunday dinner every week until she dies. (16 years on, that deal is still a stroke of genius on my part, I can tell you, although I have a feeling that after this blog entry I might have to dust off my roasting dish).

I have also stood up in church on more than one occasion, when taking on godparenting duties for family members and friends, and renounced the Devil. I squared this with myself by looking up the dictionary definition of ‘renounce’ and decided I could live with 'giving up or refusing to obey or recognise' a red, horny man with hooves.

But my daughter’s interest in being christened got me thinking. Should I do it for her? If it’s something she really wants, should I swallow my pride and logic and get happy clappy for her sake?

My answer came today, when my daughter came back from a school visit to a gurdwara in a nearby town. Still buzzing with excitement after her look around the Sikh temple, my daughter explained that her religious plans had changed.

“I’m changing over, Mum. I don’t want to be christened. I’m going to be a Sikh. I want to be baptised in a gurdwara. I wrote it in my thankyou letter.”

I managed to maintain a straight face.

“So what made you change your mind? Why?”

She looked at me and beamed.

“Because I love curry.”

Video is Elvis Costello - Beyond Belief

Saturday, 24 March 2012


My daughter is now a whistle-free zone.

You may recall that she has had a Roger Whittaker Simulator strung round her neck for years. (See previous post Whistle).

People with Prader-Willi Syndrome can be prone to skin-picking, but in my little girl's case, fiddling with and feeling the string and the metal clasp of the whistle with her fingers seemed to negate the urge to pick.

But her teacher recently suggested to her that she might be able to get on with her schoolwork much faster if she put the whistle away for a while. And because this appealed to my girl's desire to 'keep up' and achieve tasks she's been set, she tried it. A short while later, she decided herself that she didn't need the whistle at break times or lunchtime, either. And now she's ditched the thing at home, too.

I wondered if self-imposed cold turkey might have some side-effects, and it has. The whistle-fiddling has been replaced by a nervous tap, tap tapping of her forefinger on her teeth, followed by three strokes of her finger on her tongue. The number of taps vary, but it's always three touches on the tongue.

Interestingly, she seems to be aware of this new habit, and is trying to talk herself out of it. I mean this literally: she's having regular loud and intense debates, answering back in a two-way conversation with herself, about how she needs to stop the tapping because 'big girls' don't do that.

So I'm waiting to see what'll happen if she does manage to persuade herself to stop.

Because if she does squash the urge, I've got a feeling it'll pop up somewhere else.

Song is Syl Johnson - I Feel An Urge

Wednesday, 21 March 2012


Today is a special date.

A lot of women have them. More than you think, in fact. We don’t normally mention them. But you know me. Never knowingly undershared.

Fourteen years ago, March 21 was a good date. A momentous date. It was a day something amazing was going to happen. I was pregnant for the first time, and this was my due date.

I lost the baby at 9 weeks.

Don’t worry. I’m not going to go all mushy and sentimental. I’m not one for all that stuff about little angels in heaven, although if it helps other people, good luck to them.

Because my baby wasn’t really a baby. It was a collection of cells. A bundle of tissue. But our love and excitement was wrapped up in that DNA and losing it was a real shock. It was a physical blow. After the D & C, I felt hollow and sad and angry.

Pregnancy was never the same after that. It was always underscored with fear. 

I was terrified during the  initial stages of my pregnancy with my daughter.  Once the scan went OK, I managed to calm down and settle into a bovine state of gestation. Once she was born, and she was diagnosed with Prader-Willi Syndrome, the fear came back. Something had been wrong after all, you see. I was stupid to think it wouldn’t. This is what me and pregnancy was like. We didn’t mix well.

Events continued to prove me right. I had a ruptured ectopic pregnancy and lost a tube, and another miscarriage that involved going back again and again for ultrasound after ultrasound until they told me there was no heartbeat after all.

To this day I can’t bear those scenes on the telly and in films when they rub the jelly on the woman’s pregnant belly, and stare at the image, smiling and getting teary-eyed at the sight of their tiny baby.

Everything about it takes me back to the times I’ve spent in the Early Pregnancy Unit looking at the blackness and wishing I could see that tiny rhythmic blip of a heartbeat, my husband holding my hand and not knowing what to say or do to make it better.

So today, I’ll just spend a minute or two remembering and wondering what that little bundle of cells might have turned into. And I’ll do it again on November 21 and on December 26.

And maybe I will get mushy and sentimental after all and give my two children a few extra hugs and silently thank them for being tough enough to stick around.

Video is Echo & The Bunnymen - Nothing Ever Lasts Forever

Friday, 16 March 2012


She’s back.

My daughter’s three days of adventure on her PGL trip are over.

The activity holiday organised by her school was a huge hit.

Once we’d got through the usual blow by blow, or rather forkful by forkful, account of what she’d eaten, my daughter volunteered the following information about her escapades.

"I had three gos on the zip wire, Mum. I’m not tired. They said I broke the record for falling asleep the quickest in my room. I’m not shattered. I didn’t like the fishcake, but I ate it all up. We couldn’t do fencing because the saw [sic] was broken. I liked it so much, I want to live there. I would like to work at PGL. It stands for Parents Get Lost, you know."

The school have filled out a little diary with nuggets of information about how she joined in with everything, including scaling part of the climbing wall, swinging on a giant swing, wriggling through a tunnel, trampolining, dancing at the disco, and helping tidy and pack.

All summed up with the last diary entry: “An absolute pleasure to take away and we know she had a great time - she kept telling us.

The adventurer has gone to bed, pink and fragrant from her shower and hair-wash. Calm, serene, sleepy, dreamy, and very very happy.

That was at 7pm. Her brother, on the other hand, has only just gone quiet after spending storytime bouncing up and down on his bed with a pair of pants on his head.

Video is The Upsetters - Return Of Django

Thursday, 15 March 2012


I think this is a courageous, honest, sensitively-handled, angry, and righteous (in the best sense of the word) blog post about an unmentionable subject that needs to be mentioned.

Do you?

We need to talk about Ivan

(from sturdyblog)

Video is Crazy Horse - I Don't Want To Talk About It

Wednesday, 14 March 2012


I’ve just dropped my daughter off at school.

I gave her a big hug and a kiss, and watched her disappear inside, wearing her waterproof mac, trackie bottoms and trainers, and carrying a luminous pink bag that weighs the same as a small hippopotamus.

It’s packed with towels and spare trainers and T-shirts and jumpers and a washbag and a torch and a spangly dress and a swimming cozzie and Bully the cuddly, soft toy bull. (Not a Bully from Jim Bowen’s Bullseye show, although if it was one of those that would be super, smashing, great).

My daughter and her classmates are piling into a minibus and heading to deepest darkest East Sussex, for three days and two nights.

It’s a PGL multi-activity holiday, and they’ll be taking part in all sorts of exciting stuff from fencing and archery to climbing and disco dancing. (I wrote about it in my previous post Intrepid).

It’s the kind of thing kids all over the country do.

It’s the kind of thing my girl does, too.

I never thought she’d be able to take part in something like this. I used to wonder whether she’d ever walk or talk. 

Days like these are ordinary and extraordinary. 

They're not perfect, though. There's always a tiny improvement that could be made. Today, for example, could have been truly sublime. If only I'd thought to hide my toddler in the luggage rack.

Video is The Kinks - Days

Saturday, 10 March 2012


I’ve been mulling over the news for a few days now.

This week, the Government announced that it is to close of 36 of its 54 Remploy factories, putting more than 1,700 jobs at risk. These are state-owned businesses which offer employment for people with disabilities.

These ‘sheltered factories’ are being shut down because it is felt that disabled people don’t want to work in such ‘segregated’ and ‘outdated’ employment. They operate at a loss, because it is expensive to provide an environment in which people with a wide range of disabilities can work in a variety of jobs.
The business is built around their needs. Each worker is heavily subsidised by the state. 

Many disability charities support the move. It’s hoped the Government’s Access To Work programme, which gives advice and support to disabled people and employers if a disabled person’s health or disability affects their ability to work, will be ‘better value’. 

The aim is that disabled people will be happier and more fulfilled if they are in an integrated working environment, doing valued jobs alongside other members of society.

It’s a nice idea.

Unfortunately, I think in many cases, it’s a pie-in-the-sky, unworkable, utopian fantasy.

I hope that when my daughter grows up she can do some form of work. I want her to feel useful and respected and feel proud of doing her share as part of our community.

I’m under no illusion that this will be easy.

She will need support. She’ll need a lot of supervision: someone helping her focus on tasks, someone making sure she is safe, someone monitoring her access to food.

I can’t see the [average of] £2,900 which could be allocated to her through the Access To Work being a terribly huge incentive to an employer to take her on.

Of course this can be a help to some people. 

Battles have been fought and fought hard for disabled people to be included in mainstream life. 

But inclusion isn’t always the best option.

My girl has really blossomed in the special school environment. And yet some people would say that it’s wrong to ‘segregate’ disabled children like this.

In fact, her school is very much involved in the community, and has close links and partnerships with mainstream schools in the town.

A bit like Remploy factories, who work with local businesses and communities and give many disabled people pride and respect that I genuinely fear they will struggle to achieve in the profit-driven world of the free market.

There are good employers out there. Many firms give excellent support to their workers who suffer ill health or develop a disability. Funnily enough, businesses aren’t all evil, just like people on benefits aren’t all scroungers.

But I cannot believe that in the current economic climate, with so many people chasing so few jobs, that a couple of grand is going to help persuade employers to take on a disabled worker with complex needs.

I believe that this is, when all’s said and done, another cost-cutting exercise. 

Can anyone explain to me why the disabled are high up on the list of people who need to bear the brunt of Government cuts?

It feels like they’ve been mugged already. And now this is kicking them when they’re down.

Meanwhile, the ‘unfairness’ of a mansion tax continues to be debated.

I mean, really. For fuck’s sake.

Song is Eels - All In A Day's Work

    Friday, 9 March 2012


    My daughter went on a walk with her school.

    They were looking at local buildings as part of learning about local history, and she told me that they visited the church.

    “I’d like to get married in St Andrew’s Church, Mum,” she said.

    “I’m quite keen to get married.”

    I can’t adequately express the tangled knot of emotions this tugged tight in me.

    I just can’t.

    Video is Feist - The Circle Married The Line

    Tuesday, 6 March 2012


    It’s a thought that she can’t shake. It’s an idea that’s stuck. It’s something that goes round and round in her brain.

    She’ll mention it. Then she’ll mention it again. And again. And again.

    I’m about to use some technical language here, so bear with me. There is, absolutely bugger all chance of getting her to change the subject.

    Today’s superglue phrase was “adult single bed”.

    My daughter’s friend at school had told her she’d got a new bed. A cabin bed with steps up to the mattress and a little ‘tent’ area underneath.

    “How big is Bethany’s bed, Mum?” My daughter asked me, at the beginning of what I didn’t realise then was going to be a Very Long Conversation.

    “Oh, it’ll be the same size as yours, it’s just it’s taller and got a bit underneath it. But I should think it’ll be a single bed size.”
    “A children’s bed?”
    “Well, probably not. Single bed size, I suppose, is an adult size.”
    “So an adult single bed, then.”
    “Yes. An adult single bed.”

    And so it began. This phrase was repeated scores of times as my girl talked to me about it, then to herself, then back to me, and then back to herself.

    The great debate was interspersed with supplementary questions. “Why don’t you have an adult single bed, Mum? You’ve got a double one, haven’t you? Is that a double adult single bed? Can a double be a single? Is it an adult bed? Can you get a children’s double bed?”

    It got a bit wearing. My husband arrived home. I greeted him with the words: “Can you talk to your daughter about her adult single bed, please, because if I have to say it one more time I’m going to go and play in traffic.”

    We had a respite while she ate her tea. Someone with Prader-Willi Syndrome isn’t all that chatty when polishing off every last scrap on their plate. Anything else they’re obsessing about takes a back seat for a while.

    But then it was back with a vengeance. I finally cracked. In a reasonably calm manner, but through gritted teeth, I said: “Enough now. It’s not all that interesting talking about beds all the time. Let’s forget about it now.”

    She looked at me solemnly. 

    “OK, Mum. I’m not talking about beds any more. I’m tired. I’m going to bed. I’m going to bed right now. And I’m not talking about beds. It’s not very good is it, to talk about beds. I’m going to got to bed and not talk about beds any more. In my adult single bed. Because that’s what I’ve got: an adult single bed.”

    Video is They Might Be Giants - Bed Bed Bed

    Friday, 2 March 2012


    We have a couple of musical codes in our house.

    Our daughter is very interested in the size of her dinner. Having Prader-Willi Syndrome means she is always hungry and is obsessed about food, so that moment when her meal is plonked down in front of her is important.

    “Is it a big dinner?” she’ll ask, surveying the plate, suspiciously.

    “Yes, sweetheart, it’s massive.” I reply.

    Although those aren’t the actual words I use.

    When she was little, and was getting her words mixed up and jumbled around, she kept saying “mathis” instead of “massive”. It wasn’t a huge leap from there.

    “How big is my dinner, Mummy?”

    “It’s not just big, darlin’, it’s JOHNNY MATHIS!”

    Our entire family uses this phrase now. (Incidentally, putting a meal on a side plate and filling it up right to the edges makes it appear much more Johnny Mathis than having it sit forlornly in the middle of a large dinner plate).

    We also have another piece of invented slang derived from musical origins - The Jonny Spencer. This refers to a particularly nuclear nappy-filling (used first for my daughter, later for my son, and now for my great-niece). It's a short form of The Jon Spencer Poos Explosion (do you see what we did there?).

    Some people get sniffy about spoonerisms, puerile puns, or poo and bum jokes.

    We thrive on 'em. *puts hand under armpit and makes a fart noise*. 

    Video is Johnny Mathis & Deniece Williams - Too Much, Too Little, Too Late

    Video is The Jon Spencer Blues Explosion - She Said