Firefighting

A suspiciously small, strangely familiar firefighter

Too much of 2013 has been spent fighting fires.

It started with strength-sapping sleepless nights and bouts of the jitters for my daughter that left her behaving oddly, distant, not being herself. It was only after months of worry, and a series of medical investigations, that we finally got her back. She was diagnosed with a mood disorder, and miraculously restored to her old self through mild medication. There are days when I can almost hear the crackle of the flames and wonder if the fire is going to break out again, but her tablets are currently doing a damn fine job of damping down the danger, without dousing her own spark.

In all honesty, much of the flame-stomping has occured off-blog. I’ve only recently briefly mentioned the terrible, accelerating, diminishment of my mother-in-law, whose memory is being slowly unravelled by dementia. At the beginning of the year she used to read this blog; now she can’t remember how to turn on her computer. The safety net we provide is sagging, alarmingly, a bit like the rest of me, and we’re about to get some outside help (for the safety net, not my saggy bits, oh, let’s move on, shall we?).

The tail end of the year has seen the fires spread, violently, terrifyingly, to my dad. Hospitalised for weeks with a sudden, serious brain illness, he’s finally came home, just before Christmas. He’s there, but not there, and I just want him back for me, for his grandchildren, and for my brave, frightened mum.

––––

Christ, I can't end there. This is turning out to be more depressing than Jools Hollands’ Hootenanny, and no-one deserves that. What I need to do is have a good long look back over my blog, and remind myself of all the good stuff that went on in 2013. A sunny holiday, school shows, parties, new friends, old friends, music, laughs, fun.

And anyway, my husband’s not working tonight. What the hell, if I light up a couple of flaming sambucas and stick some rousingly arousing music on the turntable, we might see the New Year in with a bang. 

Song is Agnes Obel - Fuel To Fire. I'd like to point out this is not rousingly arousing. It's just kind of beautiful and contemplative and also, handily, has 'fire' in the title. I would have put Aretha Franklin's Dr Feelgood here if we're talking sexy music, but I've already posted it on this blog. Probably more than once.

City

Sometimes you have to get things in perspective.

Yesterday mine was skewed. Worse than Dougal’s misinterpretation of small cows and far away cows in Father Ted.

Let me get my defence in first. I was brewing my patented New Year (Stinker Of A) Cold™ and my head felt like someone had locked me in an echo chamber with bin-bothering gitdancers Stomp.

Of course, this was a day my daughter was 'on one'. One of her repitition cycles. Not just a cycle, a sodding great perseveration Penny Farthing, its spokes made out initially of teeth:

“I don’t gnash my teeth, do I, Mum?”

“I don’t gnash my teeth, do I?”

“Some people gnash their teeth, but I don’t, do I?”

“I thought I gnashed them, then. Did I gnash them?”

“I don’t gnash my teeth, do I, Mum?”

...and then of Lego:

“I like Lego Friends.”

“I like Lego Friends.”

“I really like Lego Friends.”

“I like Lego City, but I like Lego friends best.”

The Declamatory Declaration Of Lego Liking continued throughout the day, with the slight variation of asking her brother if he liked Lego friends, too; if he also liked Lego friends; and if Lego friends was something that he liked.

I stopped counting at the 57th repeat, and believe me that was much nearer the start of it than the end of it.

She can’t help sometimes getting stuck in a loop of repetition - because of her syndrome. It’s a common trait in people with Prader-Willi. It’s not her fault. But I still lost it. I shouted at the top of my croaky voice at her, the thin strands of my patience snapping and pinging in all directions as I got irrationally angry. A completely pointless rant that left both me and her upset.

Today I felt terrible about it.

So much so that I dug out every Lego set we own (including a fire station, jeep, ambulance, and police truck) to construct and add to the Lego Friends house that had caused such uproar yesterday. With music blaring out, I sat with my daughter, and we built this city on rock and roll, repeats and all.

Video is Starship - We Built This City. I can only apologise.

Repeats

My daughter still believes. She did look a little sceptical that Santa had adjudged her brother to have been “nice” and not “naughty” in his personalised internet video message from the North Pole, but she wasn’t too bothered, as she’d just received the same verdict.

They went off to sleep last night when tiredness overtook their excitement, both squeezing their eyes shut and promising not to peep. My 15-year-old daughter and my five-year-old boy. 

And now, our family has grown. We have been joined by an annoying Gremlin-like creature called a Furby. As far as I can fathom, there’s no off-switch, so when we wanted a bit of peace we had to put it in another room to send it to sleep, as our daughter told us we weren’t allowed to take the batteries out, because “that would be killing her”. The unhinged muppet is called Fiona, apparently. Interestingly, as attached as my daughter is to her new evil incubus, her favourite present today seems to have been a jar of giant gherkins.

I’m slightly bruised from having to lie on the floor while my son tested the ‘off-road’ capabilities of his new remote control car by driving it over the top of me. I’ve been having some funny conversations with him using his new walkie-talkies: “Over it. Get over it, Mummy,” was his idea of how you signal to the other person you’ve finished talking. But his favourite present is a tiny Lego Batman figure. He’s lost the mini Dark Knight’s mask three times today (each loss marked by escalating degrees of panic starting off at Red Alert and finishing with Cuban Missile Crisis level).

They say there’s a lot of repeats at Christmas. They weren’t kidding. I said they weren’t kidding. And I'm not just talking about the Brussels sprouts fumes emanating from my husband's rear portions. Our daughter, whose peseveration* levels were sky high (*where she asks the same questions or says the same sentence repeatedly) was at one end of the table; next to her was my dad, now home after six weeks in hospital, who is currently stuck in a time loop world where his brain thinks everything is happening over and over again; and next to him was my mum-in-law, whose dementia causes conversations to roll right round baby right round, like a record baby, right round...

But it worked. It worked out. We snapped our crackers, gave eachother gifts, and laughed at my Yorkshire Puddings, which my daughter defended on my behalf. Repeatedly. 

So, I’ve got a truckload of turkey left, and we’re going have the same personnel for a Boxing Day re-run. We’re going to have to go down the park tomorrow to get some fresh air and burn off some calories. We’ll be taking the walkie-talkies, and the Furby, but probably not the gherkins.

It’s been a long, kind of wonderful, kind of heartbreaking day. Over and out.

Video is LCD Soundsystem - On Repeat

Photograph

She’s a lot scruffier in the picture on the left. Her collar was crinkled. The plastic, moulded body brace that encased her torso for so many years is hidden, but I recognise the awkward way it made her clothes bunch up, giving her that American-footballer-bulked-up-shoulder-pad look. You might be forgiven for thinking the haircut was homemade (it wasn’t, but upon reflection, I might be going back to see if the hairdresser will give refunds ten years later). I like her expression. It’s a bit timid, but she’s happy. I remember her being very excited when she came home with the school photo order form. My daughter’s first school photo. Copious copies were ordered. 

She’s impossibly grown-up in the new one. Although she is wearing a borrowed tie, because, of course, on school photograph day, she lost hers. There’s some metalwork you can see (the braces on her teeth), and some you can’t (the titanium rods that have straightened her scoliosis-bent spine). She looks still, and poised. It’s a bit misleading, because she’s still the same head-bobbing, funny-walking, flappy-handed, lolloper.

Two things strike me.  Firstly: bloody hell, that’s a good gig isn’t it, getting the contract to do the school pics? Are there School Photo territory battles, like the Glasgow Ice Cream Wars? If a new firm comes to town, are they sent a threatening photo through the post, with the letters made up of tiny, cut up passport-sized specimen pics of smiling kids in their best jumpers, spelling out: “PITCH FOR MY PLAYGROUND PATCH AGAIN, PAL, AND I’LL SHOW YOU A NEW PLACE TO FIT YOUR FLASHGUN"?

The second thing? My girl has come a long way in a decade. We all have. 

Song is World Party - Photograph

Bound

Carrying a fake cake and singing about mountains of grub; these two things would not necessarily be high on my list of Things To Give Prader-Willi Syndrome children To Do At Their School Christmas Show.

And yet, there she was, my daughter, the one with the obsession with eating and an inability to feel full up. Ambling into the school hall to the strains of the Oliver! soundtrack, carrying a giant, delicious-looking chocolate Yule log. It’s safe to say alarm bells were ringing in my head. Loud ones, marked IRONY.

But it didn’t seem to upset her. She sang, with her own unique mix of shyness and gusto (shusto? gusness?), enjoying the song, which is like every PWS kid’s dream request list:

Food, glorious food

We’re anxious to try it

Three banquets a day

Our favourite diet

Twenty minutes later, she was hula-ing in a grass skirt. (It was a Christmas holiday, apparently, if you’re wondering where the tropical theme surfaced in the special school’s festive performance). The “What the Aloha was that?” section was in between Mary & Joseph on a wheeled donkey, and some dancing Christmas trees.

I love her school shows. They’re ramshackle, random, rip-roaring, rousing and I’m running out of ‘r’s. I can’t properly describe the feeling I get when I watch; it’s wrapped around my heart, but trying to pin it to the page unravels it, and I want to stay bound.

Video is Food, Glorious Food, from Oliver! (The Musical)

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Revelation
Shine

Elastic

It was an almighty harumph, from a champion harumpher. My husband stomped past me, muttering. I was only able to pick out a few words in between the mumbled oaths. In a brief moment of articulation, he built up from a Muttley style “Shnikinrickin fashinrockn rassafrassa rickinrackets” to a climactic Jim Royle-esque “Easy? My arse!”.

The source of his impatience was a bag of tiny elastic bands and a plastic tool. Earlier, he’d taken my daughter to the orthodontist, who'd shown him, effortlessly, how the bands needed to be attached to hooks on her top and bottom braces to pull her gnashers together while she slept. His stomp was due to the lack of success on his inaugural attempt.

“I can’t remember you being this rubbish at Operation...” I commented, as I walked past him, with the irritating air of one who is convinced they will be able to swan in, adeptly perform the task the other failed at, and then be all smug about it. I'd picked this dig at his board game skills over the obvious, but ruder: "Should have thought you'd be used to manipulating a tiny, pink, tool..."

Once upstairs, I picked up the hook implement, and approached my daughter, who was lying in her bed. 

“Don’t worry, sweetheart, Mum’ll sort you out,” I reassured my slightly anxious-looking girl. With a few deft moves, one side was hooked, lined and sinkered.

We smiled at eachother. “I don’t think Daddy was very good at this, was he?” I whispered.“Let’s get this other side done, and we can tell him he was rubb...”  I didn’t reach the ‘ish’. The second band was proving a bit trickier, and suddenly it slipped, and catapulted up from the bottom of her mouth to her top gum, with an almighty TWAAAAAANGGGGG!. 

“Are you all right?” I asked, thinking that the elastic missile must have hurt. My girl couldn’t answer. She was shaking. Concerned, I grabbed her face in my hands and looked at her, and it was then that I realised she was giggling, uncontrollably.

Sometimes a mishap or a setback can reverberate, and set my daughter's nerves jangling. Less often, unpredictably, amazingly, she might even find it funny; this was one of those occasions. She set me off, too.  We were reduced to a heap of jelly, both giggling and making intermittent "Dddd-DOING!" noises, our laughs pinging backward and forward like the wayward band.

Video is Sultans Of Ping FC - Where's Me Jumper?

Sparkle

Today we gave everyone sparkly bums.

My daughter was wearing her glittery dress, bought as part of a Halloween outfit but cunningly doubling as a disco party frock this afternoon. She left a trail of silver specks wherever she sat.

The party that merited the spangly outfit was a Prader-Willi Syndrome Christmas Party: a collection of chromosome blip-sharing youngsters who gathered together at a church hall in Enfield, along with parents, friends, and siblings. Some of the kids were dressed up: there were elves, fairies, superheroes, a snowman, and even a matching Dad and son crocodile onesie combo.

My girl launched into her usual fact-finding mission. “Who’s got Prader-Willi?” she asked the girls sitting at the craft table making paper chains with her. Introductions were made, names, ages, and PW yesses were noted. Shy grins turned into big, beaming smiles.

One 18-year-old girl swapped email addresses with me so I could send her a photo. We’d never met before, but she was incredibly familiar to me.  I kept looking at her: her glasses slipping down to the end of her nose; her dipped head and laugh, her hands being constantly wrung with excitement; her slightly off-kilter questions; her body shape; her voice; her language; her wonky smile, her mannerisms; her happiness. I realised, with a jolt, that she was my daughter’s  doppelganger. The likenesses were uncanny.

Santa was all set to make an appearance. The suspense was too much for my five-year-old boy, who went into meltdown over how long it was taking the Man In Red And White to get there, and would simply not accept 'traffic jams' as an excuse for the delay. “He can just fly over the cars,” he squealed, his perfectly reasonable logic delivered perfectly unreasonably. “That’s my son,” I explained to the woman I was chatting to, as the red-faced, sobbing boy in a Superman costume was dragged off by his dad into a corner to be Told Off. “He’s not got Prader-Willi, he’s just got the hump.”

Father Christmas finally appeared. My heart lurched. The party was being held in the hall of a Mormon church, and earlier on my girl and I had been talking to an American chap, who turned out to be one of the Salt Lake City Squad. (By the way, Mormons, no caffeine? No tea or coffee allowed? Who knew?). Anyhoo, we’d all discussed his accent and how people from different countries spoke differently. My girl had paid very close attention. So when Santa started handing out presents and wishing the boys and girls Merry Christmas in a familiar American accent, I whispered to my husband: “She’s going to realise who it is.” My girl, who had been commandeered by her new 18-year-old twin into helping pass Father Christmas the gifts, had had plenty of time to put two and two together. She marched over to me, clutching her own present, her face flushed with a revelatory blood rush.

“You know how Santa can’t be everywhere, and sometimes he has helpers being Santa instead of him, Mum?” 

“Yes.”
She grinned.

“Well, I think this is actually the real one.”

Song is The Posies - The Glitter Prize

Many thanks to all the parents and volunteers who made today such a special event.

Switch

My daughter doesn’t always understand how she’s supposed to feel. 

It’s the part of Prader-Willi Syndrome that dips its toe in the autistic spectrum. No, not just dips its toe - has a right good paddle about.  Her empathy is under-amped. Not because she’s emotionless: she’s brimming with it, enough to bubble and spill over at unexpected moments. But these moments tend to be random: when a classmate insists they’re in Year 9 when she’s sure they’re in Year 10; when a Hello Kitty bag strap is the wrong shade of pink; when a wave of upset rises from the deepest fathoms for an unfathomable reason.

My uncle died this week. The phone call wasn’t out of the blue, but then of course at the same time it was. A Scot from Polish stock, with a consonant-packed surname, a sometimes impenetrable accent, and a dry sense of humour, he loved his family fiercely and was fiercely loved back. 

“Will they be sad?” my daughter quizzed me. She was inquiring after my aunt and my cousins and the tribe of grandchildren who adored him. John, Dad, Grandad, Uncle John. She was scanning my face, searching, watching, wanting to know, how it felt, what I would do, how was I reacting, why there were tears in my eyes, what it meant.

“Yes, sweetheart, they will be very sad. When someone you love dies then you do feel sad because you miss them very much. It’s very upsetting.”

“I’m not upset,” she said. She looked a little worried, and it was my turn to scan her face. I think she was aware that it wasn’t the right thing to say. I suspect she thinks it’s ‘grown up’ not to cry when other people do. 

We've had two power cuts this week, and it struck me that when it comes to our emotions we’re all wired differently, but there are certain trip switches that short us all out. My girl, on the other hand, is working from a different fusebox. 

Song is Elvis Costello And The Roots - Tripwire

Geezer

The people who EAT themselves to DEATH!

It sounds like a low budget, barrel-scraping, horror film sequel, doesn’t it?

It isn’t, though. It’s a stock phrase I’ve seen used in headlines about Prader-Willi Syndrome more times than a PWS person has dreamt of hot dinners. Well, maybe not that often, but hyperbole never knowingly underused, and all that. 

It’s probably heresy to admit it in the non-nuanced world of unwavering internet opinions, I have very mixed feelings about this phrase. Because it’s technically correct. People with Prader-Willi have a hunger that they cannot control. If allowed unrestricted access to food, then they could die, initially from a stomach rupture, or in the long-term because of the life-threatening levels of obesity and associated medical conditions that could follow.

It’s horrific. It’s shocking. It’s extreme, of course, because it’s a tabloid or magazine headline. But it’s true.

After 15 years of living with a child with PWS, the phrase doesn’t stab at me like it used to. But I still yearn to be able to add my own sub-deck:

The people who EAT themselves to DEATH!

But of course, this is very unlikely, because a lot of help, support and expertise is out there to help families prevent this happening, and with a bit of luck and a lot of hard work it’s perfectly feasible for someone with this condition to live a long and even a happy life.

Not exactly snappy, is it? 

Journalists have to boil complicated issues down. I geddit. I used to be one (local, not tabloid, I hasten to add, in an effort to emphasise that I have never rifled through a bin in my life, apart from that time I lost an earring, and anyway it was my bin). The focus on the ‘story’ of PWS for a tabloid will never be the families coping pretty well everyday with its challenges. It will always be the ‘volume turned up to 11’ end of the spectrum. And in some ways it should be. Awareness of the condition and the need to fundraise for research and support is never going to be improved by playing things down. 

A friend forwarded me a link to this recent Daily Mail* story about a ridiculously cute little lad with PWS. (*Obligatory warning: It’s The Mail. Do not, under any circumstances, look at the comments). Yes, this article is what sparked my EAT themselves to DEATH ramblings. It’s sensationalised of course. Buried near the end is a quote from the boy’s mum: “Michelle, who works as a part-time nurse, added: 'With the continued research in genetics and PWS, we remain positive about the future and hope that our little boy will be able to lead a happy and healthy life.'” This was immediately followed by four bullet-point examples showing bizarre and frightening examples of the very worst aspects of the syndrome, which in juxtaposition was like having a hug and then being slapped.

Read it. See what you think. Perhaps I’m being a bit cynical, but it has just struck me that the boy’s unusual name (a sure-fire internet ‘hit’ generator) might have been a factor in the story being published.

I’m torn. If more people become familiar with the syndrome, then it’s a good thing. On the other hand, it’s a pretty bleak read for anyone with a newly-diagnosed PWS baby. And on the other...well I’ve run out of hands, but, I’ll carry on anyway...the photos show a cheeky chappy who looks like fun. 

So here’s to Geezer (named, fantastically, after Black Sabbath bassist Geezer Butler). Life will not be easy for you. But that’s no reason why it can’t be good. 

Video is Black Sabbath - Fairies Wear Boots

Broadcasting

Sometimes my daughter proves to me she has more Random Access Memories than Daft Punk.

Today brought about another entry in the Stuff She Unexpectedly Remembers charts, just as I happened to be listening to a slice of magnificently nerdy, electronic music from a speccy, history-obsessed duo called Public Service Broadcasting. Thanks to some military-style planning on the babysitting front, me and my husband and my brother and his wife had actually been to see this band play live last night.

“Were Public Sir House good, Mum? What do they sound like?” my daughter asked me, after school.

I thought for a moment about how best to describe them. They mix up electronic beats and synth loops with guitar riffs, which underscore fascinating audio clips from old films, news broadcasts, propaganda, and public information films. Some of audio samples come with grainy, flickering visuals, which in the live show are beamed onto projector screens and small towers of valve-powered retro televisions. Now, I understand this sounds a bit odd, but it’s jolly well very entertaining.

I looked at my girl’s expectant face, and decided to let her hear for herself, rather than listen to a rambling load of old guff from me. “Public Service Broadcasting, sweetheart. They sound like this...” 

She listened intently. “I like it! This is good. What’s it called?” I told her the track I’d chosen was “If War Should Come”. Ignoring her little brother, who was jumping up and down and shouting that he wanted to change its name to 'Alex' (!), she listened to the rest of the song, which comes complete with air raid instructions to “extinguish all lights” and ends with the sound of Neville Chamberlain, solemnly declaring “I have to tell you now, this country is at war.” 

My daughter suddenly looked very excited. “THIS IS FROM THE OLDEN DAYS! THIS IS IN GOODNIGHT MR TOM! WHEN THEY’RE ALL LISTENING IN THE CHURCH!”

I was flabbergasted she’d recognised that the voice clip was the same one used in one of 'her' films.

"Wow. Yes, it is, you're right."

“Who says it, Mum? It is the same man as in Goodnight Mr Tom, isn't it?” 

“Yes. Well, it was on the radio and it was the Prime Minister at the time, who was called Neville Chamberlain.”

“Oh.”  Her RAM chip kicked in again. “I know who the Prime Minister is now, Mum. He’s David.”

“Yes, he is! And what’s his last name?”

“Er.....Beckham?”

Video is: Public Service Broadcasting - If War Should Come

Century

15/11/13 is a Significant Date.

Bear with me, and I’ll explain. Prader-Willi Syndrome is caused by a spontaneous alteration on chromosome 15. A little missing stripe. If you want to get all technical about it, geneticists label this region 15q11-q13. There are also two other chromosome disorders which have the same genetic alteration (Angelman's Syndrome and Dup15q) and which share some, but not all of the characteristics of Prader-Willi.*

Because this 15q11-q13 number resembles the date 15/11/13, which of course only rolls around once a century, the International Prader-Willi Syndrome Organisation and other people and groups involved with PWS used it to try to further awareness of the syndrome. Fundraising events were organised; blog posts posted; T-shirts printed; conversations started.

Today, of course, is the 16th. So I managed to mark the significant date of 15/11/13, which, if you recall, only comes around every 100 years, by remembering it 24 hours too late. I blame my poor organisational skills, which don’t have anything to do with any missing stripes on particular chromosomes, and are entirely due to me being a numpty.

See you back here next century then? Stick it in your diary - but good luck with scrolling through your smartphone’s calender to get to 3013...

*Click here to go to the IPWSO website page featuring a very clear diagram explaining the connections between the three 'chromosome 15 deletion' disorders.

Song is Blur - End Of A Century

Bango

My daughter has something in common with a large number of children with special needs: she doesn’t like loud noises. Certain big bangs, crashes or wallops can upset her, although she’s not affected quite as badly as the autistic lad in her class who wears ear defenders and as a consequence looks like a miniature DJ who’s lost his decks.  

She updated me with the latest chart, today. Here they are, in reverse order, pop pickers.

5) Fire bells

“You don’t need to worry about fire bells, really, sweetheart, because they only have a drill every so often, and they only last for a minute or two,” I said to her last year. The day before her school had a fire. The day before the bell went off for about half an hour. The day before the fire bell was topped by the ear-splitting squeal of fire engine sirens, just to add another level of wrongness to the How Wrong Was Mum scale.

4) Loud people, particularly [name redacted] and [name redacted] in her class

A bit specific, this one.

3) Daddy, drilling

My husband does not do much DIY. I do not encourage him to do more. When he does, the rest of us go out.

2) Pop concerts/music

My girl is very concerned about music being too loud. Her parents’ choice of music more so than her own, but even her beloved One Direction tunes are never turned up to 11, which is something to be grateful for, I suppose. A few years ago, she went to ‘The Big Gig’, a show organised by the Guides at Wembley Arena, and still talks about how it was too loud. Pixie Lott was on the bill, so I would have to agree.

1) Rheumatic drills

When she told me this I wondered, for a fleeting moment, where on earth she’d seen a Sergeant Major doing that marching Sound Off song with a bunch of arthritic pensioners, and how noisy would that be anyway? Then I realised she meant pneumatic drills, which is fair enough.

You may have noticed fireworks aren’t on the list. After a brief spell in the charts a few years back, they have consistently failed to feature in the affronted eardrum countdown. She’s decided she likes them. "They're a different kind of loud, Mum. Thunder's all right, too."

So tonight, we’ve been to a display (with a set of ear defenders stuffed in my bag, just in case of a sudden change of mind, but which weren't needed). We’re off to a friend’s firework party on Saturday, too.  And we’ll have a bangin’ time, because they're the right sort of decibels, apparently.

Song is Billy & The King Bees - Bango

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Kaboom
Blast

Vamps

Nosferatu, eat your heart out, sucker.

The annual sugar rush of Trick or Treating was not designed with Prader-Willi Syndrome kids in mind.

Children who don’t physically feel full up and buckets full of unsuitable sweeties and chocs are not a good mix.

Strictly speaking, as someone who has just had to peel my pumped up, jitterbug, vampiric son from the ceiling, that much sugar is not really a good mix for kids who don’t have PWS, either.

But our daughter, the one who has to have her diet strictly monitored, and the one whose calories we have to limit, loves Hallowe'en - the whole bat to pumpkin lot of it.

So we do what we always do: prepare, control and substitute.

We only target a few select Hallowe'enie homes: neighbours, aunties, uncles, and grandparents. Instead of Haribo multipacks, or kiddy meth delivery systems as I like to call them, savvy relatives dish out lower calorie snacks (raisins, breadsticks, Flump marshmallows, etc). If anyone sticks in normal sweets or chocolates, I do a quick switcheroo, delving into a ‘here’s one I made earlier’ bag of no-sugar substitutes. I let my daughter have a rummage through the treats and choose one thing to eat when we get back home, and then we save the rest for snacks to eke out (or as it’s Halloween, that should probably read ‘eek’ out) throughout the week.

The kids are settled down now, in front of a film called Corpse Bride, which isn’t quite as horrific as it sounds, and is for children, honestly.  

It’ll soon be time to tuck them into their coffins.

It’s been blood-sucking, stake-avoiding, crypt-creeping, pointy-toothsome fun.

Video is Jace Everett - Bad Things (the theme from vampire series True Blood). "When you came in the air went out." That's a killer first line, isn't it? 

Related post: 
Hallowe'en

Wind-up

Winding back the clocks unsettles my daughter. She can’t move the little hands round in her brain and click the concept into place.

It didn’t help that I used the phrase: “We’ve lost an hour.” The response of: “But where’s it GONE?” was, of course, inevitable.

It’s a difficult enough concept, anyway. Add in the rigid mealtimes required in a semi-militarised Prader-Willi Syndrome household, and it’s a ticking time bomb of confusion.

Luckily, she was tired this morning and had slept in a little, so it was relatively easy to stagger the breakfast/dinner/tea times to fit into an artificial approximation of her usual pattern.

And, thankfully, at the moment, timings don’t have to be quite as exact as they were when our daughter was little. In previous years, when she’s been up with the lark and feeling particularly hungry, we have been known to refer to the clocks going back to something called ‘Greenwich Really Mean Time’).

Our girl understands more now, can be reasoned with to a certain degree, and is more capable of making choices. She’s willing to have her dinner or tea an hour or so later than normal if she knows she’ll be eating out somewhere as a treat with family or friends. Counter-intuitively, despite her fierce hunger, she sometimes gets even more agitated if mealtimes are brought forward, but if it’s for a particular reason that you explain clearly and give her enough advance warning about, she will accept it. Changes to the food timetable in whatever form they take aren’t something you can just spring on her: they have to be carried out in accordance with the detailed blueprints.  And, just like on Grand Designs, you should really try to stick to the architect’s drawings wherever possible, otherwise the ceiling will fall in.

So we had a morning of discussions about time, hours, time going backwards and forwards, how clocks change, why some change by themselves, why I’d forgotten to change the kitchen clock, why her watch was wrong, why her snack time was 10 o’clock but not really 10 o’clock, what time it was now, what time it would have been, and when will it be dinner time.

The clocks weren’t the only tightly wound-up things in our house today.

Video is Dr. Feelgood - She's A Wind-Up

Video is Cher - If I Could Turn Back Time. Just because I turned back time today, and it gave me an urge to wear fishnets and straddle cannons.

Related posts: Clocks

Head

My daughter came home today with her head in a bag. It’s either charming or terrifying, I just haven’t decided yet. 

It was the last day of school before half term, so I was expecting her to bring home her PE kit, which only comes back for a wash during school breaks, and therefore is a) a bit whiffy and b) more wrinkled than the testicles of an elderly elephant that's spent too long in the bath.

Her brother was also weighed down with the drawstring bag/smelly trainers/shorts combo, and in addition a cardboard item which I think was supposed to be a telescope, but he insisted was a ‘fart torpedo launcher’. All fairly par for the course, to be honest.

The head took me by surprise.

“It’s my head mum. My actual head.”

“Well, when you say your actual head, that’s not quite right, because you’ve still got your actual head, this one is just a copy, sweetheart.”

“It’s not, it’s my head. My actual one.”

“Well, it looks just like your head, but you do know it’s not real, is it?’

“It is real. It’s got my glasses and everything.”

“OK. Whatever you say.” 

I decided to capitulate over the decapitation before I got a headache. An actual one.

Video is Goldfrapp - Lovely Head

Scarlett

The day began well for some of us, less well for others. 

I scored a lie-in, as the kids inexplicably decided not to get up until a reasonable hour.

My night shift-surviving husband, however (still wiping the sleepy dust out of his eyes as he surfaced just before midday) was greeted with the following zinger from me: “Hi, you have remembered we’re off on a girls’ lunch today, and by the way you’re taking your son to Jungle Jim’s play centre at 1 o’clock, luvyoubye.” 

It was a mum and daughter's meal out, no boys allowed, which we try to organise every few weeks. My son’s invitation to the wacky warehouse circle of hell had come after we’d arranged our trip, so the hospital pass to my husband give me the merest pang (actually, no, just a tiny ping) of guilt.

Meanwhile, we settled down for some civilised lunching. My girl polished off some hot olives. She demolished a salad. Her favoured tabasco-soaked Virgin Mary was slurped. As usual, the spices were as hot as my daughter’s anticipation, but there was one difference today: a special guest.

The VIP was pint-sized, and not exactly loquacious, but captivating company all the same. Looking at her gave me a Proustian rush rushy enough to make my head spin. My daughter was fascinated with her.

Her name is Scarlett, and she's nearly six months old. She has Prader-Willi Syndrome, just like my 15-year-old daughter. Her mum and me recently met for the first time through that ‘friend of a friend’ coincidence thing that happens online occasionally.

Sometimes it’s hard to remember what my girl was like as a baby. How helpless she seemed, with her floppy muscles and uncertain future. How beautiful and terrifying she was. I wish I could head back there with some white spirit and dissolve the fear that coated my feelings like sticky gloss paint. I wish I could have had a sneak preview of this photo: a teenager in pink jeans and matching lip gloss, holding a PWS baby, and beaming. I wish I could have seen her being so grown-up: offering calorie information and diet tips to Scarlett's mum; and asking a stream of questions about how her baby fed, slept, cried, and played. 

Just four girls meeting up for lunch. 

But it was so much more.

Thanks, Hannah and Scarlett, for a lovely day. Made even more lovely for Hannah, I'm sure, by the fact that in the same way I was swerving an afternoon in an indoor play centre, she managed to miss a kids' party with a clown. Oh God, Oh God, a CLOWN.

Video is Dexy's Midnight Runners - The Teams That Meet In Caffs

Godzilla

I didn’t know my daughter was legendary.

It was the hushed, reverential tones that got me. Her actions had been Talked About. And grown, exponentially, in the telling.

A few months ago, when she was in the midst of missing out on 71 hours of sleep in one week, she’d acted strangely at school. It culminated in a hugely uncharacteristic scene in a classroom where she turned over several chairs and upended a table, before her teacher held her in a very loose restraint hold.

Thankfully there was no repeat of this behaviour as we spent the next few months getting to grips with the whys and wherefores of her sleeplessness (see previous post, Stabilisers).

But, as usually happens in schools, word got around. 

The table-turning incident occurred in Josie’s satellite class at mainstream school. Nothing was damaged, apart from my nerves upon hearing about it. The special school where she is technically a pupil is half a mile away, and separate. And yet, when I went to a fundraising coffee morning there recently, and started chatting with one of my girl’s former classmates, who didn’t make the move with her to the mainstream satellite class, he began to quiz me about it.

He buttered me up first by asking how my daughter was. But he soon cut to the chase.

“She trashed the school, didn’t she?” he asked, his voice filled with awe.

I opened my mouth to deny this, stung by the idea that the kids had somehow heard about what happened and built it up into a school-wide, havoc-wreaking rampage, when - as upsetting as it was at the time - it was more of a small-scale, localised, rumpus.

But then I looked at his happy face. He was frankly thrilled at the idea that his sweet-natured, quiet, ex-classmate had turned into Godzilla, and I didn’t want to disappoint him.

“Well...yes. Yes, she did, a bit.”

Don’t judge me.

Song is Feeder - Godzilla

Stabilisers

My daughter’s wobbly bike ride through life hit some serious potholes earlier this year.

We’d had bent spokes before, and the odd puncture, but nothing like this.

She started suffering bouts of destabilising sleeplessness. In the worst throes of it, she span out of control, with jittery and agitated long nights of freewheeling, followed by days where pedalling was too much effort.

The medical investigations started. An MRI ruled out anything like swelling on the brain. An EEG, the results of which took an age to turn up, has finally confirmed that she isn’t suffering seizures.

In the meantime, a neuro-psychiatrist diagnosed the problem as a mood disorder on the spectrum of bi-polar. Lamotrigine, a mood-stabiliser, was prescribed.

Now, two months later, the bike is back on track. It still won’t travel in a straight line, but then it never did. Its rider is happy again. Fitting the stabilisers has brought our daughter back to us: with all her funny little ways, her shy smiles, her meandering chats and occasionally clunky gear changes. 

She’ll never pass the drugs tests for the Tour de France, though.

Charles Wright - Ninety Day Cycle People

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Sequins

You know those great nights, with your best mate, when you meet up, catch up, slap on some make-up and sequins and hit the town? (Any male readers with a previously undisclosed love of make-up and sequins, feel free to come out in the comments below).

Well, that’s the kind of night my daughter had tonight.

Today, she was 15. We bought her what she really wanted - all £8.99 plus postage and packing of it - an Animagic Sleepy Time pony, that cries, whinnies, slurps and snores, a bit like me after too much gin. We organised the night she really, really wanted: a trip to the curry hut, a film on the home cinema, and a sleepover with her friend Bethany.

The usual Prader-Willi Syndrome provisos applied: her Indian was appropriately low-fat, her poppadoms and chutneys strictly rationed, her Hello Kitty birthday cake slice swapped with a portion of Nanna’s legendary non-sugar fruit cake.

The film she chose, Marley & Me, had her and Bethany transfixed, although both displayed somewhat autistic hearts of stone as they remained stoically unmoved by the dead dog ending.  “I’m not crying,” my girl announced. “I’m not either,” nodded Bethany, in agreement. “I’m very grown-up, though,” my daughter felt the need to add. “Me too,” came the echo.

They’re upstairs now, both decked out in Hello Kitty pyjamas - my girl’s ones (a birthday present) slightly too long in the leg, Bethany’s a faded, favourite, old pair, way too short for her now she’s grown about six inches in six months. 

They’ve done a reasonable job with the deep cleanse wipes and left themselves with only faintly mascara-smeared panda eyes. They’ve taken the pink braids out of my daughter’s hair, grabbed their cuddly toys, and hit the sack, the boxing glove of sleep knocking them out before the referee had chance to ask for a clean fight.

Apparently we're watching the One Direction Live Concert DVD and Mamma Mia in the morning, so help me God.

Sleep tight, girls.

Video is Kathryn Williams - Heart Shaped Stone,  from her beautiful new album, Crown Electric.  I wanted to use the song Sequins, from the same LP, but I can't find a video. You're just going to have to buy the album, if you want to listen to it. Which you really should...

Everything

This might be a bit dull for you, so I’ll make it quick.

No, I’m not quoting what my husband says to me in bed, the charmer.

It’s our wedding anniversary today. 18 years ago he took me up the aisle (I’m sorry, this seems to be turning into a Carry On homage).

Strangely, I wasn’t nervous. This was despite the fact that everyone was looking at me and I was wearing a big white frock (although my calm, steady demeanour was greatly aided by the anchoring effect of a pair of 16 hole white DM boots).

I just knew, that’s all. I’d known for a long time: we’d been together for six years already. I was 24 and I was sure. This big, tall, handsome fella, who looked like Nick Faldo when he scrubbed up and Paul Merton when he got up, was who I wanted, who I needed, who I loved. 

He was everything. He still is.

Er ... just to be clear, I'm referring to my husband, not Nick Faldo. Or Paul Merton. That’d be a bit weird.

And when I say everything, I mean there is other 'stuff' that I couldn't live without, like our two kids, and our record player.  

I'm ruining this, now, aren't I?

Video is the Have I Got News For You credits from 1995, the year we got married.

Deadpan

I’ve got a pretty good poker face. Not that I ever play poker, but you know what I mean. Parents of disabled children tend to learn how to quickly switch on a deadpan expression, to mask any potentially anxiety-inducing looks of shock, hurt, or fear. We also have to stifle a lot of laughter when our children are deadly serious about unintentially funny topics. (Please note an unintentionally funny topic is not a chocolate bar shaped like a penis).

I can keep a straight, expressionless fizzog when I need to. It’s useful when my daughter gets anxious about unexpected changes; when a doctor tells me something alarming but I don’t want to let my girl know I’m alarmed; and when she regularly bowls me a googly by asking random questions like: “Are baby hippopotamuses more dangerous than wasps?” and “Are you sure Hitler isn’t in the school toilet?”.

Someone tweeted this fantastic photo the other day. Yep. That’s what sometimes goes on behind my mask.

Video is Lady Gaga - Poker Face 

Bullseye

Yesterday, we raised the goblet of rock as we watched a gang of kids with special needs sing haphazard, glorious versions of Abba’s Mamma Mia, Ho Hey, by The Lumineers, and that well-known rock classic, We’re Going To The Zoo.

I’d had the phone call earlier in the week. Would my girl like to practice a few songs at After-School Club so she could climb aboard the tour bus with the school’s rock choir and perform at the church fete on Saturday? The answer, of course, was “For those about to rock, I salute you, yes please.”

It was their first time ‘on the road’. They had to produce something special to win over the gig crowd - after all, they were on after a troop of small, cute children doing a cheerleading routine to the Thunderbirds theme. 

It took them a while to clamber on to the raised outside stage, which had a high step some of them couldn’t manage on their own. There was a slight delay while the church blokes running the PA had to dash inside and find a tape deck, when it turned out the music was on a cassette and not a CD. A girl in a wheelchair was lifted onto the front of the stage, and sat, flanked by two members of staff, supporting her as she joined in with real gusto. My daughter stood, wrapped up warm in her bright blue winter coat, shyly shaking some maracas. 

They were a bit timid at first. Their animal impressions during the zoo song were slightly half-hearted, and a lack of a working monitor caused a few difficulties when it came to Abba, approached at an ambitious speed.  They couldn’t hear the music too well, so it turned into a round as they got a couple of verses ahead of the backing track, but eventually got far enough in front for the chorus to catch up with them. By this point, they were giving it their all, blissfully unaware of their unorthodox relationship with the tempo. Superblummintroupers, the lot of ‘em.

And then it was time for their crowning moment, as they launched into The Lumineers.  The “HO!”s and  HEY!”s rang out, not necessarily in the right order, even though the teacher was holding up signs to help, but it didn’t matter. The kids, the staff, and the crowd were all grinning. I clapped along, looking at my daughter’s shining face; the line “I belong to you, you belong to me, my sweetheart,” just about sums it all up.

We left as it started to drizzle, carrying the treasure from our pre-gig booty collection mission at the fete’s fundrasing stalls. We passed an enthusiastic Zumba class, whooping it up with a full-on performance of Gangnam Style. A gaggle of giggling Air Cadets had joined in at the back. My daughter stopped for a minute to watch, dreamily hugging a bagful of second-hand books to her chest. And my boy just couldn’t stop beaming, clutching his ‘Test Your Strength’ stall prize -  a slightly lethal-looking plastic bow and arrow.  

It was a bullseye kind of day.

Video is The Lumineers - Ho Hey