And it's rare frockage from me and
dinner-suitage from him. We felt we had
to dress up for a New Year's Eve blog post.
2012 is almost over, and the internet is stuffed to the brim with retrospectives and reviews, Best Ofs, Worst Ofs, Love-Offs, and Eff Offs.
Any attempt by me to put together some sort of ‘highlights package’ of my family’s year fills me with the terrible fear that I might effectively be sending you a New Year Round Robin letter.*(You know the kind of thing: ‘Of course, Porscha gained 6 A* A-Levels and is now studying astrophysics at Harvard, and working at an orphanage in Mozambique over the holidays, which is so typically big-hearted of her’).
But, as is customary as the New Year beckons, I have stopped for a moment and made like a shoplifter (taken stock).
So, here are a few, random, end-of-2012 thoughts that make me glad to be still fighting the good fight:
My daughter is healthy, and she’s happy in her new school. We’ve been a bit wiped out by the hormone storms, but we’re taking surfing lessons and starting to ride the waves. (Apologies for this metaphor, but that’s what happens at Christmas when you were up watching Point Break at 1am). Her weight is under control, her emotions a little less so, but I just can't adequately say how proud I am of my unpredictable, sweet, unique teenager.
My son is ridiculously entertaining. He’s an exocet missile of fun and mayhem and will be blasting off from nursery to school at the end of 2013, God help them.
My husband is still here, and I know he always will be. However, I'm not sure that his lovely fuzzy beard (which makes him look like ‘Lego Indiana Jones’ Dad’ according to my son, or a homeless Nick Faldo according to me) can be relied on to remain.
And as for looking ahead to the New Year?
I know 2013 will be full of uplifting highs and inescapable lows. For all of us. Here’s to the giddy joy of hitting the heights. And here’s to someone sending us a file in a cake so we can at least have a go at escaping. (Although when you’re trying to escape from some of the problems caused by Prader-Willi Syndrome, a cake probably isn’t the best idea. I haven’t thought this through...)
Finally a resolution I’d like everyone to consider adopting. I obviously can’t seem to shake Keanu Reeves out of my head, because the line is stolen from Bill, or Ted, or whichever adventurer it was who said it:
Damien is dead. We flushed him down the toilet. My daughter announced solemnly that Kitty, Damien’s 'wife', had kissed him just before we scooped him out of the tank with a net. “It was like she was saying goodbye...” she explained. If she’d have had a violin, she’d have started playing it.
We bought the fishtank for her birthday last year, and she loved it. As the months have passed, however, it's plummeted down her popularity chart. (She even recently expressed a desire to put it on ebay to make room for a doll's house). It intrigues me that the smoking embers of her fishy interest have been rekindled into fiery fascination by Damien’s dramatic death. I say ‘dramatic’, but ‘drifty’ or ‘floaty’ would be more applicable.
So having rediscovered fish-love, my girl asked if we could head to our nearby aquatic superstore to get a Damien II. I giggle every time I think of this new fishy fellow’s Omen-like name. I’m resisting the temptation to magic marker 666 on his side and add a hanging nanny ornament to the aquarium.
Damien II came with a female companion (both of them a variety of fish called dwarf gouramis). So far, they are settling in well with Damien’s widow. The man who sold them to us assured us that two females and a male are a good combination. My husband nodded, dreamily, and I kicked him.
Did I mention that the aquatic superstore does really live up to the 'superstore' part of its name? In fact, I’d call it an amazeostore, purely and simply for the fact that it has a random, giant creatue by its entrance. A shark, you might think. A manta ray? An octopus? A goldfish?
Nope. A gorilla.
Video is Jerry Goldsmith: Omen II Music Related posts: Luther Tank
There was a slight mix-up on Christmas morning. I can’t understand how it happened. A couple of Santa’s presents were wrong.
My daughter has a theory: she thinks The Big Man “went to Tesco and didn’t write it down right on his shopping list”.
Luckily, it didn’t upset her. A teenager with Prader-Willi Syndrome can magnify small, unexpected problems into huge, overwhelming ones, but in this case this didn’t happen.
She’s just written this letter to Mr Claus. And it’s pretty reasonable, although I do detect an undercurrent of passive aggressive disapproval.
Dear Santa
Thank you for my Tom[’s] Midnight Garden book and thank you for my Tom[’s] Midnight Garden DVD, but you makermishtake [sic] because Santa I wanted Goodnight Mr Tom book and Goodnight Mr Tom DVD because that [is] what I wanted for Christmas. But it don’t matter Santa because I buy it with Tim’s money and I like Tom’s Midnight Garden anyway.
Love from Josie xx
For some reason, when reading this, I feel as though it has an unwritten ending of:
“P.S. So stick that up your chimney, you stupid bastard.” But maybe that’s just me.
On Sunday, various members of our family popped round to Mum and Dad’s house to drop off a few pressies and consume excess food (the latter as part of the pre-Christmas overeating training regime). Mum asked me if I had any footage of that “Gang-bang” thing my daughter did in the school show. My three nieces’ astonished double takes were a joy to behold. “Gangnam, Mum, GANG-NAM Style, for God’s sake!” I told her, before asking if she may possibly have used that expression whilst telling her friends what her granddaughter had been up to recently, and if so, had she heard of a social services SWAT team turning up at the school gates?
Christmas Eve (always my favourite part of the festive season) saw our two children attend the church nativity service, followed by us taking our daughter out for the now traditional “Night Before Christmas Curry”. The smallest, wriggliest offspring was packed off to Nanna and Grandad’s for an hour while our girl sat with us in the Indian restaurant and ploughed her way through a chicken tikka (and a spoonful of her dad’s spicy dhansak sauce). She was brilliantly, sparklingly, happy: chatting away at full speed and jumping from subject to subject in huge, random, leaps. I couldn’t stop beaming at her, catching my husband’s eye and exchanging grins with him.
We headed home, picking up our over-excited boy on the way, who had apparently been let loose on Nanna’s electric bath chair seat. If she ever gets a Stannah stair lift, I think he might actually demand to move in. And then, before we knew it, it was time to put out a mince pie and carrot for Santa and Rudolph, and wrangle the kids to bed.
Christmas Day was always going to be a little more effort. My husband’s four days on/four days off shifts happened to fall slap bang on Christmas this year, so he had to head off for work in the early hours. I managed to supervise the opening of presents without the kids coming to blows, and was going great guns with the turkey, when we had a slight hiccup. I turned on the waste disposal in the kitchen sink, it made a burping sound to better any human Brussels sprouts-fuelled effort later in the day, and water and potato peelings began to fire upwards from the plughole. Having picked them out of my hair and eyebrows, I opened the cupboard door under the sink to discover water pouring out of a pipe. We had a leak, a back-up and possibly a blockage.
I plonked the kids in front of the TV and switched on a recording of The Snowman to keep them out of the way for half an hour, returned to the fray, got out a stack of teatowels and got on my hands and knees to reach in and mop up the giant puddle of mucky water. When Mum & Dad arrived, at around the time I was due to be putting on the roasties, they were greeted by the site of me half-in/half out of the cupboard, with my big fat behind waggling in the air (topped off by a plunging portion of builder’s bum). The soundtrack to this was the angelic strains of “Walking In The Air”, accompanied by Muttley-style incoherent growlings and mutterings echoing out from under the sink. This is a festive image they can never unsee.
But it takes more than being peppered with high velocity peelings to put me off my stride. The calming influence of my unflappable mother kept me on an even keel, (as did the life-saving existence of a working sink in our utility room), and a perfectly acceptable Christmas dinner was served up a mere 30 minutes late. What’s more, my daughter, the one with an insatiable appetite, didn’t go off the deep end at the delay, probably because she was nose-deep in distracting presents.
I’m now drinking a large Snowball. I’ve got my feet up. My husband is home and has been chased round the house by a small boy wearing a Sonic The Hedgehog woolly hat. My daughter has only just gone to bed, after dancing for more than an hour to Christmas songs played on her new Hello Kitty CD player. There’s a placcy bag over the kitchen taps to remind us not to turn them on and flood the floor again - and at some point I must call the plumber.
It's been a great day. Not perfect, obviously, but that would be far too dull, wouldn't it? Hope yours was imperfectly happy, too.
Song is The Pogues - Sally Maclennane (The...ahem...Peel session version)
It took several weeks of rehearsals, and some superhuman effort not to spill the beans.
But my daughter, who normally reveals any secret she’s told in world-record time, kept schtum about the big surprise in her class’s song in the Christmas Show.
And lo, it came to pass, that her and her five classmates lined up with pieces of paper spelling out C.H.R.I.S.T.M.A.S. and launched into an excruciating lesson in rhyming from Sir Clifford of Richardmus.
It was Cliff’s Christmas Alphabet song, which I had been warned about. It starts: ‘C is for the candy trimmed around the Christmas tree, H is for the happiness with all the fam-i-lee’ and goes downhill from there. But, you know how it is - even a Cliff-denier like me will put up with top of the pap songs when they’re performed by a bunch of children with with huge grins on their faces, especially when one of them belongs to me.
As the verses continued, their smiles got wider. The big ‘reveal’ was coming. Mid-song, the music suddenly changed, the volume was pumped up high, that familiar driving drumbeat echoed around the hall, crunchy synths kicked in, and it all went Gangnam Style.
The audience let out a huge, actual ROAR of delight. The teenage troupe’s festive version of Korean rapper Psy’s huge, hit song saw them subsitute “Ooh, sexy lay-dee” with “Yeah, Merry Christ-mas”, and of course let out a triumphant shouts of “Wuppa SANTA STYLE!”.
My daughter and each of her classmates wigged out good and proper, doing those ridiculous and irresistable “I’m disco-dancing and riding a horse” moves.
The song, I realise now, must have been used up and down the land this Christmas, in shows and pantos.
But last night, none of us saw it coming. And it was a blast of sheer delight.
Video is Psy - Gangnam Style (live). I'll admit the roar from the crowd in the special school hall yesterday wasn't quite as loud as this concert in Seoul. Related post: Cliffhanger
Getting urine out of a mattress is a rubbish way to spend your Sunday morning. Soap, water, a hairdryer and Febreze, if you're wondering.
Having a song dedicated to you on the radio while you're scrubbing a mattress doesn't half cheer you up. Even if the song is Paul Nicholas singing Lady In Red* *I never asked for it, for God's sake! What do you take me for?
The best way to make a four-year-old stop being naughty is removal of pudding privileges.
The best way to make a 14-year-old with Prader-Willi Syndrome stop being naughty is to take her home from Nanna's for half an hour just when her baby cousin is due round, and only take her back when she promises to be good. Food privileges, of course, cannot be tampered with for any reason. You simply cannot use threats of removal of food as a punishment for someone who is constantly hungry. It's just too cruel. Besides that, you'd never hear the bloody end of it.
Deciding not to send Christmas cards and making a silly video instead is fun.
Happy Christmas!
Video is my own Christmas Message 2012. The music is Rolf Harris and Rick Parfitt - Christmas In The Sun. The man responsible for making me aware of its existence is the legendary @Beany_. He was the same chap who dedicated the aforementioned Paul Nicholas song to me on the Charity Shop Classics internet radio show today. But I'm trying not to hold that against him.
The sound of The Tweenies' Christmas Album is blasting out through our house. My daughter is approximating the tunes and jigging about in a festive manner.
At this time of year she normally has an attack of the collywobbles, sparked by the nagging thought that perhaps she hasn’t been good enough to make Santa’s Nice List.
I was convinced the levels of worry would reach supersonic levels this December after recent displays of unprecedented boundary-testing. The triple whammy of teenage hormones, emotional immaturity, and a stubborn streak a mile wide, have seen a late surge of crosses in the Naughty Column. When was she going to have a contrition meltdown?
The answer came the other day. She buried her head in a notebook and began to write. An hour later she presented me with a two page Apology To End All Apologies.
“We’d better get this to Father Christmas,” she told me solemnly. “Quickly.”
Dear Santa,
I do apologise about my behaviour last week. I am really sorry about reading at midnight and later. I am really sorry about not listen to my Mum and staying awake all night. I was really upset because dad hit my bed but not me, Santa.* I do not have enough space on the page and I would like to tell you more about my behaviour, Santa...
...I am really sorry for getting up for a book at midnight to put in my schoolbag and my Mum and Dad was mad at me. And Dad chucked my Princess Magazine in my bag. I am really sorry about not listen to the teachers at school and Mum and Dad was absolutely livid indeed at me.* I am really sorry about my silly behaviour, Santa, and very sorry about sillying behaviour at school.
lots of love from J.
I am really sorry about being naughty girl before Christmas. Am I on the nice list for Christmas? Will you tell me I am a good girl for Christmas on the video Mum has got on the computer like last year?
lots of love from J again.
I am really sorry for doing.
lots of love from J.
xxx
xxx
xxx
*Her Dad did indeed smack his hand down on her bed in exasperation at one point during the Night Of The Long Books; Social Services please note the BUT NOT ME bit.
*I am now adopting ‘absolutely livid indeed’ as my phrase of choice to indicate all levels of irritation or anger.
So, what do you think? My conclusion is that she should be completely forgiven for any misdemeanours. If you don’t think this is the fulsomest of fulsome apologies, then you will be forcibly fed cold Brussels sprouts until you agree.
Video is Johnny Cash - Folsom Prison Blues. Yes, I know it's a stretch, but I had to make up for the following tune...
Song is The Tweenies - Santa Claus Is Coming To Town Related Posts: Moody Unhinged
She snuck onto my computer while I was unloading things from the car. This wouldn’t necessarily be a huge problem - the worst she usually does if my attention is diverted is print off 50 copies of Hello Kitty colouring pages. This time, though, I’d stupidly walked away without logging out of my Amazon account, which meant that my girl and her trigger finger were able to discover the Buy Now With One Click button.
Put it this way: I wasn’t actually planning to order a Kindle version of My Secret Garden.
“WHY did you buy this without asking? You haven't even GOT a Kindle!” I yelled, searching frantically to see if the £1.98 digibook was just an apéritif. Images of £200 Dr Beats headphones started to flash before my eyes.
Luckily, the damage to my bank balance remained minimal. She had ordered several DVDs and books, but luckily these were ones that she had meticulously entered on her Santa list, so I was planning to get them anyway. Not that I told her this. I said I had just cancelled all her purchases, and she would have to wait until Santa came to see if she would get what she wanted.
We talked further. I wasn’t at my most patient.
“I’m sorry, Mummy, I didn’t know I was buying things,” she said.
“Well, I think you did, because you pressed the Buy Now button, and I know that you can read those words perfectly well.”
“Oh.”
“I’m not very happy, because you haven’t listened to me very well today.”
“I HAVE!”
“And you’ve answered back a lot.”
“I HAVEN’T!”
She stomped off. The next thing I heard was her reading out aloud, very POINTEDLY, from the library book she’d brought home from school. It was a chapter called ‘I Get So Moody’ from a book called ‘Me And My Feelings’. The story involves a girl telling her friend how her mum has shouted at her ‘for nothing’. It actually then goes on to relate how the girl admits to her pal that she'd been really moody, had lost control, and didn't blame her mum for shouting. Did my daughter read this bit out? Did she my arse. She just made sure the 'SHOUTED at for NOTHING' was HEAVILY EMPHASISED, and shot me a few meaningful glances over the top of her glasses.
She's just gone to bed. With a big, happy smile on her face. I'm now grinning, too. Somehow, somewhere along the line, this little saga seems to have ended up with me being firmly put in my place. Me and my bloody feelings.
I told my husband last night if he buys me a 'onesie' for Christmas, I'm divorcing him.
He then wondered out loud if there were any ‘joint onesies’. “There probably are," he replied to himself. "They're probably called 'twosies'. Can you get different ‘joins’? Like where you share the head hole? Or perhaps you’re joined at the hip?”
This put a twinkle in my eye. “I think you might be looking at the ‘specialist’ market there,” I surmised. “I imagine they’re probably joined at the ‘groinsies’.”
We ended the night with a giggle, which was an appropriate way to round off a day that had glowed from start to finish.
It was our son’s 4th birthday. He dressed as Batman, played with toy knights, got a NERF gun his hands were too small to fire, but got round the fact by stripping to his pants, running around the house, and asking his sister to shoot him. She really liked this game.
The Boy Wonder had a party for his pals from nursery at a little kids café. This place has the honour of being so small, friendly and well-run that it is the only soft play area premises I can enter without losing the will to live.
Parties always need a little bit of extra planning when you have a child with Prader-Willi Syndrome. A quick word in advance and a food handover before festivities began ensured that my daughter was presented with a plate containing low-fat substitutes for the cake and ice-cream her brother and his friends were allowed, but she wasn’t.
My girl, aged 14, thought long and hard about whether she wanted to sit at the party table with the four year olds, or at the next table with the adults.
“I’ll sit here, Mum,” she said, sliding into the seat next to me, unpacking the bag containing her Helly Kitty notepad, Hello Kitty pencilcase, and Jessie J biography. Yes, yes, I know what I said about this latter monstrosity a while ago, but she had a) been armed with a good working knowledge of the Amazon website, b) had saved up her pocket money, and c) had displayed a persistence you just wouldn’t believe.
When her brother gave out the party bags at the end, she was given the job of handing out balloons. We made a fuss of her for being so grown-up and helping look after the little ones. Her chest puffed out with pride. Mine did too, or that might have been my new bra.
Today is my birthday. I didn’t feel like I needed any presents: they kind of all came yesterday.*
If you are planning to deliver any presents today, please note this last sentence is meant in a purely figurative sense.
Song is Marvin Gaye & Kim Weston - It Takes Two. Thank God, after the Cliff debacle. Related posts: Dante Swored
I knew she wasn’t at all happy about it. She’d told me several times she didn’t want to take part.
At my daughter’s annual statement review today I found out exactly what lay behind this strength of feeling. I can’t say I blame her.
Her class are being forced to sing a Cliff Richard song in the school's Christmas show.
I couldn’t bring myself to ask if it was Mistletoe And Wine. I chose ignorance. Otherwise, how could I live with the guilt?
The Cliff-hanger was an amusing highlight of a strong and positive meeting. I came away feeling inspired by the enthusiasm, insight, and goddamn common sense talked by my daughter's teacher. I felt reassured by the suggestions, strategies and plans we discussed. Oh, and the Sir Clifford story had a happy ending, too.
The teacher explained: “She’s not been keen and had said she didn’t like it, and wouldn't do it, even though I told her that we were doing a bit of a funny twist on the song and everyone in the class would be joining in.” (Apparently, it had become a bit of a theme in the class, with the others trying to persuade her, and her digging her heels in for days and days, stubbornly refusing to countenance the idea of taking part).
Her teacher continued: “At one point, she even told me she was going back to the primary site and would be performing as Mary in the Nativity instead, which was...well.. interesting... as they aren’t even doing a Nativity.”
“But the other day she announced that even though she didn’t like the song she would do it. And do you know what happened?”
I shook my head, unable to guess.
“The rest of the class gave her a huge cheer and a round of applause! It was a really big thing: they were all so happy she’d agreed.”
This fair warmed the cockles of my heart, I can tell you. Although we’ll have to wait and see how my mood changes when I actually hear Cliff’s cockle-cooling cacophony.
There is no way I’m posting one of his songs here, no way.
We have a meeting next week at my daughter’s school.
It’s the Annual Review for her Statement of Special Needs - the first one she’s had since she’s been placed in her special school’s satellite class at the local mainstream secondary.
We’ve been reading through the detailed report provided by her teacher, which describes how our girl has settled in, what her behaviour has been like, what strengths she is showing, what fixations she has, her confidence levels, her independence, and how she’s performing in different subjects. It also reviews each of her ‘Statement Objectives’, which detail the areas where she needs extra help and focus.
This may all sound a bit ‘management-speak’. Like those god-awful ‘appraisals’ I vaguely remember from my previous life in office-land.
But it’s not like that. It looks like a sheaf of dull paperwork, but it really isn’t. It’s a fascinating description of my daughter’s school life. It’s a report that rings true. It matches the unique personality of our girl.
It’s illuminating and familiar.
We’re in the loop. What's more, we're riding the same rollercoaster.
Two hours sleep is not enough to survive on. It makes you slightly unhinged. Margaret Thatcher managed on four, and to be honest that explains a lot.
Last night we had meltdown. I’m still trying to get to the bottom of why it happened, but so far I’m stumped. 120 minutes kip is not sufficient to keep the brain cells whirring fast enough to do the necessary sleuthing. I’m chalking it up to ‘just one of those days’.
My daughter had had a twitchy evening, asking random questions, repeating herself, and nervously sticking her fingers in her mouth.
The volume got louder, the questions more off-kilter.
“Am I going to shrink. Shrink. SHRINK?” was the starter for ten (explained by the fact that her prescription for growth hormone hadn’t been ready at the chemists, so she knew she’d miss her injection for one night).
Next minute, it was “Is Hitler alive? Hitler. Hitler. HITLER!” (this one made me laugh, I must admit. She’d been learning about World War II in her history lesson. Apparently at one stage, she thought he was in the school toilets).
“No, he’s dead. He died in 1945, sweetheart. Sixty something years ago.”
“Ah, so if he hadn’t died he’d be dead.”
“Er...yes.”
“IF HE HADN’T DIED HITLER WOULD BE DEAD.”
“That’s right.”
This was a bright spot in a dark night.
From this point onwards, my usually compliant, polite daughter clambered into her stubborn shoes and wouldn’t take the cement bastards off.
Getting her to have a shower was a battle I wish I’d never started. Getting her to clean her teeth was another. Persuading her to stop cleaning them was another. She didn’t want to go to bed, she got up six times for a wee, she turned her light back on countless times, searching her room for books she couldn’t find, wandering down the stairs to put them in her school bag and take them out again. All the time, all requests were ignored or given some serious attitude. “NO. I WON’T. I’M JUST DOING THIS. No, no, NO. I will NOT.” Every time I told her off, she giggled to the point of hysterics. Threats to ban favourite toys, and subsequent confiscations, had no impact.
I tried ignoring her because surely she’d flag, but after hours more of footsteps, bangs and crashes from her room, more visits to the loo, her dad ominously putting a shelf-load of books in a black bin-bag, more loud backchat, and finally, the piéce de resistance - wetting the bed (quite deliberately) at 4am, I gave up. Nothing, and I mean nothing was going to stop her mini-rampage. So I left her to it, and snatched a couple of hours kip.
This morning, I was shattered. My daughter, of course, was bright and breezy.
She smiled up at me, bashfully. “I’m sorry, Mummy. I’m going to be really good today.”
“Well, really. I didn’t think you were like that.”
I lay in the bath, listening to the sound of my daughter downstairs, admonishing someone.
“You swored. It’s not nice to swore. I thought you were better than that.”
I smiled to myself, wondering which imaginary friend was getting the telling-off. Was it Freya? If so, an invisible, silent girl developing a hitherto previously-unexpressed Anglo-Saxon vocabulary was an interesting development.
“You’re being resp..resp..resp...dis-respect-ful, Jessie J. I’m disappointed in you.”
So it was a pop star who was in trouble. I realised what had happened, and shouted downstairs to my husband to check exactly what our daughter was looking up on YouTube, while I clambered out from my bubble-filled tub.
She’d been trying to watch a video for one of the songs from her Pop Princess compilation CD, but had stumbled across a demo version with fruity language.
“It had the F word, Mum. She doesn’t say that on my CD. It’s rude.”
I agreed. We had a brief chat about looking for “(clean version)” in the title of videos, and avoiding “(explicit lyrics)”, to prevent any further unpleasantness.
“I still want her book, 'Jessie J: Nice To Meet You - My Story', for Christmas, Mum. She doesn’t swore in that.”
I know all about the book. My daughter's been reading a library copy of it OUT LOUD continuously for the past few days.
If Santa brings it, it won't be Jessie who'll be doing the sworing around here.
Video is Calexico - Gypsy's Curse (You didn't really think it was going to be Jessie J, did you?)
My daughter stood next to me in church guessing the tune to a hymn and watching wide-eyed as we said goodbye to my Great Aunty Betty. I reminded my girl that when she was just a tot she had a special name for Aunty Betty, who always had a box of Lego and Duplo for small family members to play with. “I remember,” she said. “I used to call her Betty Bricks!”
Betty’s two daughters made wonderful, warm speeches about her. My mum did a reading, her confident voice belying her nervousness.
The family gathered after the service at the local football club, where Betty (an unlikely 87-year-old football fan) had attended hundreds of games and had been treated like royalty.
My girl felt grown-up being with all the adults at a serious occasion. I told her I was very proud of her.
“It was a nice coffin, wasn’t it?” she said, brightly, to one of Betty’s daughters. “Betty was 4ft 10in tall, just like me.”
Video is Glenn Miller - Moonlight Serenade, which was played as Betty's entrance music. A classy song for a classy lady.
My friends' fireworks party went off with a bang. Well, several bangs, a collection of whomps and at least half a dozen kabooms.
There were also fizzes, flashes, cascades of colour, muddy shoes, red cheeks, hat hair, crackling wood, sizzling sausages, oohs, aaahs, and not a spark of trouble.
My daughter slept all the way home, the motorway lights flashing rhythmically across her face as music rang out from our car stereo, mixing with the light sabre swooshes from my boy's Lego Star Wars DS game.
The Force was strong with us last night.
Video is Inspiral Carpets - Irresistible Force Related post: Fireworks
We’re heading across country to a friend’s house for a Fireworks Night party. We have a large combustible package stashed in the boot.
It’s always a crash bang wallop of a night, with a display that puts most organised events to shame. Everyone who comes is instructed to bring one big firework, which all feature in a thunderous finalé, accompanied by shouts of: “That’s mine!” “No, that’s MINE!”
Our firework is called Alien War. This is a cool name, whether you’re four, fourteen, or forty.
The war nomenclature is apt, as our plans, as usual, are military in nature:
We’ve just had our hot dinner at lunchtime (a change to the normal drill that has been properly negotiated with our routine-loving daughter).
We’re packing no-sugar sweets and a couple of low calorie snacks (factored into today’s army rations).
My daughter will be having hot dogs tonight (I know the make, the calories, and how many she can have). This has been sold as a “cold tea” although there has been much discussion as to how it is actually a “cold and hot tea”, which I fear will repeated ad infinitum on the way there. And back.
I’ll also be taking a low fat pudding and fruit.
She’ll be eating later than usual, but understands this, and although she’ll be hungry she really wants to eat at the same time as my friends’ kids, so I’m confident she’ll hold out.
Appropriate clothing is vital. My girl’s odd circulation means her hands and feet get like blocks of ice, so we’ll be thermalling up with plenty of layers. The kitbag contains a very warm hat, scarf, and gloves.
The preparations are complete. Now I just have to work out how to tether my boy so he doesn’t hop on the back of a rocket and head skywards.
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 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.
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...
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.
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.
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.
