Day Twenty Three

I am used to random queries from my daughter. 

My favourite ever was: “Is Hitler in the school toilets?” The answer, which should come as no surprise to you, was no. Let’s face it, however desperate a time-travelling Hitler was for a fuhrerdumpf he’d never have got past reception, would he?

Today’s question, which has been unravelling nicely over lockdown, like my sanity, wasn’t quite to that standard. 

“If I sleep on my back, I won’t get taller, will I?” my girl asked, several times. Phase 1 was launched.
“No. You won’t,” I replied.

“Mum, if I sleep on my back, I won’t get taller, will I, and that’s good if I don’t get taller, isn’t it?” Phase 2 had been initiated.

“Yes.”

“Mum, if I sleep on my back, I won’t get taller, will I, and that’s good if I don’t get taller, isn’t it, because I can still ride my trike and my feet can reach the pedals.” Boom! Phase 3 was deployed and detonated.

I don’t know where to start with the flaws in her logic. Quite how choosing to sleep on her back could affect her height is beyond me. And wouldn’t it be getting shorter, not taller, that would make reaching the pedals a problem? There's also the small matter of her being 21, so her growing years are over, let alone the fact she had spinal fusion surgery at the age of 10.

But pointing this out would be a dangerous plan. Best not to get sucked in. A Prader-Willi person on a questioning jag reminds me for some reason of that quote from The Terminator, you know the one...

"That terminator is out there. It cannot be bargained with. It cannot be reasoned with. It doesn't feel pity, or remorse, or fear. And it absolutely will not stop, ever, until you are dead.".

Actually, on second thoughts, that's a bit extreme. A PWS person would stop when it was teatime. But you get the picture; they can go on a bit. The best tactics in this situation, is to agree, firmly, and leave the room quicker than Adolf jettisoning his kampf.

The only problem today was the Second Front. Running away from one child only put me in the line of fire from the other.

My boy had decided early on that this Monday would be an ‘appalling, anarchic attitude and backchat during his home school lessons’ kind of Monday. 

Attempting to supervise him on a piece of work that should have taken just a few minutes saw me eventually resort to several embarrassing clichés, including: “It’s your own time you’re wasting.”

But the smart little bastard can always burst my bubble. Right when my emotion level was bubbling around ‘abolutely livid’, I warned him: “Don’t laugh. If nobody else is laughing then it’s not funny,” I said.

He didn’t miss a beat: “Tell Uncle Ian that.”

https://www.justgiving.com/fundraising/carolyn-s-2-6-challenge1972

Song is Johnny Nash - There Are More Questions Than Answers

As part of the 2.6 Challenge (which is asking people to fundraise and donate towards small charities that are threatened with closure because of the effects of the Covid-19 crisis) I'm currently writing 26 blogs in 26 days.The PWSA UK is a charity which is absolutely vital for people with PWS, their families, carers and professionals who work with them. Without urgent help, PWSA UK will fold. This charity saves lives and for some people makes lives worth living. If you can, please go to my Just Giving page and donate anything you can spare - a few pence or a few pounds, it all counts. You've got three more days of this and then I'll stop, I mean that's worth something, isn't it?

Day Nineteen

Being in a household with a Prader-Willi person means you do learn to filter stuff out.

I can wilfully, skilfully ignore a level of background blatherings that would cause a random visitor (remember them?) to remark: “How can you hear yourself think?

When my husband and I do our unspoken tag team thing - otherwise known as when I sidle out of the room just after my daughter corners him in a particularly repetitive conversation cycle - I still vaguely register the conversation, but unconsciously filter it out to a background hum.

This happened yesterday, but my filter gradually failed as my daughter’s voice grew more panicky, and my husband’s started to sound as if his teeth were being well and truly gritted. I flipped my ear switch from ‘ignore’ to ‘earwig’, as I detected potential entertainment.

Her dad seemed to be explaining to her what ‘pixellating’ meant. He sounded like he was coming to the limit of the number of times he was prepared to answer the same question. I surmised this was what the last 15 minutes of ‘background hum’ had been about, but I couldn’t work out the context.

“I’m not going to tell you again, because I’ve already explained it, A LOT,” he said firmly, his exasperation clearly audible. “If you want me to watch ‘The A Word’ with you, you need to stop asking me that and PLAY the programme!”

Cue another anxious barrage of questions from her about ‘pixellating’. I started heading towards the door, motivated by a combination of nosiness, support, and the desire to take the piss. And just as I got there, the mystery of where the question had come from was solved.

“But it says in the listings that Joe is pixellated on his teacher!” said Josie, the confusion clear in her voice, possibly because she was trying to understand why Joe’s face would need to be disguised.

“All this time you didn’t think to tell me it’s in the listings?” came my husband’s accusatory voice, followed first by a pause as he located the remote and checked the programme synopsis, and then by a very large sigh.  “No,” he said, in the voice of a soldier, tired of war, “it doesn’t say that. It says Joe is fixated on his teacher. Fixated!”

"Oh!" came her unabashed reply. "Well, I know what that is."

https://www.justgiving.com/fundraising/carolyn-s-2-6-challenge1972

Song is Céu - Amor Pixelado - if you watch the video, you'll see she starts off well with the social distancing, but lets herself down by the end. Where's your 'common sense', woman?

As part of the 2.6 Challenge (which is asking people to fundraise and donate towards small charities that are threatened with closure because of the effects of the Covid-19 crisis) I'm currently writing 26 blogs in 26 days.The PWSA UK is a charity which is absolutely vital for people with PWS, their families, carers and professionals who work with them. Without urgent help, PWSA UK will fold. This charity saves lives and for some people makes lives worth living. If you can, please go to my Just Giving page and donate anything you can spare - a few pence or a few pounds, it all counts. I know I keep banging on about it. You could say I'm pixellated on it.

Day Seventeen

I don’t know about you, but I could really do with a pint. 

My phone served up a random memory from my photo feed today - the lovely sight of my girl manning the pumps behind the Rovers Return. Although I would have preferred it if it had actually served up a pint, instead of a pic. When is technology going to match my expectations? Yes, we’ve got the internet, but why can’t I materialise a Mojito in my hand? Is it too much to ask? And while I’m at it, where the hell are our jetpacks? I blame Elon Musk. I don’t know why; maybe it’s because he looks like a waxwork dummy of Rick Astley that’s been left next to a hot radiator since 1987, but I blame Elon Musk.

My hostelry-yearning has been sparked by lockdown life and my daughter plaguing me about going to the pub. 

“When will the pubs  open Mum? When can we go?”

If social services overheard the number of times she’s asked this in the past few days, I’d be put on both a reckless mother list and a 12 Step programme. 

Perseveration, it’s called. People with Prader-Willi Syndrome often perseverate. It’s when an idea, a word, a phrase, or a question gets stuck in their mind, and recurs, even when the stimulus is no longer there. My girl just can’t shift gears sometimes, and repeats and repeats and repeats herself. Answering the question doesn’t help, even if you’ve got a nice black or white response. She’ll still repeat her query, over and over - and when the answer is ‘I don’t know’, then we’re in for Perseveration, The Director’s Cut.

“So when will the pubs open, Mum? When can we go?”

I probably should explain: her desire is actually for a specific family tradition - various members heading to the pub on a Saturday morning to have a coffee with Grandad. My uncle and aunt are regulars. Different combinations of nieces and nephews of mine intermittently attend. And my daughter is a stalwart of the pub troop. The coffee is often followed by a Guinness for Grandad and half a cider for my girl, possibly not unconnected with the fact that the Saturday Club has also been witness to some extremely ‘interesting’ pronouncements, declared by my daughter at high volume in no filter mode (telling her cousin she needed to visit a sperm bank, being one of the most memorable).

“So when will the pubs open, Mum? When can we go?”

I don’t know, sweetheart. 

The pub club is on hold, like so many things are at the moment. thanks to the insidious Covidious coronavirus. 

Like Covid-19 her perseveration is catching. She keeps reminding me of what I’m really missing: the warmth, the company, the hugs, the laughs, and the simple loving heart of these visits.

Plus the beer.

https://www.justgiving.com/fundraising/carolyn-s-2-6-challenge1972

Related blog posts: Corrie, Baster

Song is Amos Milburn - One Scotch, One Bourbon, One Beer

As part of the 2.6 Challenge (which is asking people to fundraise and donate towards small charities that are threatened with closure because of the effects of the Covid-19 crisis) I'm currently writing 26 blogs in 26 days.The PWSA UK is a charity which is absolutely vital for people with PWS, their families, carers and professionals who work with them. Without urgent help, PWSA UK will fold. This charity saves lives and for some people makes lives worth living. If you can, please go to my Just Giving page and donate anything you can spare - a few pence or a few pounds, it all counts. And while you're at it, write to Elon Musk, would you, and get him to knock the space travel on the head and invent a beer materialiser, please. 

Mantra

They breed, you know. My daughter's tried-and-tested, repetitive mantras suddenly beget new ones. But brand new perseverating question and answer riffs aren't always the genetic offspring of previous obsessions - sometimes they arrive like random cuckoos in the nest. Needing a new home. Needing my daughter to mould them, repeat them, mould them some more, and repeat and repeat and repeat until they’re part of our daily life.

This one, I sense, is going to stick around.

“Mummy, I’m overweight, aren’t I?”
“No, sweetheart, you’re not, you’re just right.”

“I’m overweight. My tummy’s too big.”

“No, it’s not. It’s just that you’ve only just had your tea, so it’s a bit full at the minute, so it sticks out more, but then it goes down, and you’re just right again.”

“Oh.”

“Everyone’s tummy does that.”

“I’m not as overweight as you, am I?”

“No, you’re not.”

“My tummy isn’t as fat as yours, is it?”

“No. Your tummy isn’t as fat as mine.”

I feel like I should point something out. She opens her eyes wide, waiting. I think she recognises the scrunched-up, bulldog expression on my face. The one I make when I’m really thinking hard about the best way to explain things.

“Er...sweetheart, don’t say that to other people, please, because it’s a little bit rude.”

“Oh. OK. Why?”

“Well, some people might feel a bit sad that they are overweight and it might upset them if you go on about it.”

“Oh. OK.”

She gives me her own scrunched-up expression. It’s the face she makes when she kind of realises she probably should stop now, but she just can’t. 

“Mummy, I’m overweight, aren’t I?”

I’ll give her three goes. Three repetitions, before I do a Big Daddy splash on her. With my big fat belly.

Video is Hot Chip - Over And Over

Cumulative

I’ve never worn ribbons in my hair, or displayed a penchant for gingham dresses. I also swear like a trouper, so you may be surprised when I say that I consider myself to be a bit of a Pollyanna. But that thing the eponymous heroine of the Pollyanna stories has - about seeing the good side of a situation - I’ve got that. It’s part of my nature to scramble to find something funny in even the worst of times, and it’s my bleedin’ superpower, I tell you.

All superpowers falter, though. Kryptonite weakened Superman; becoming a floppy-fringed, disco-dancing Emo boy turned Spiderman into an idiot (Sam Raimi, what were you thinking?); and this week there has been a concerted attack on my Superpollyannaness.

It’s not been one thing. It wasn’t an alien mineral-powered laser cannon expertly aimed at me by my nemesis. It’s cumulative crap.

It’s the fourth working day of my husband’s four on, four off shifts (a time when the end of my tether is a familiar sight).

My boy has not only been testing the boundaries, he’s been climbing up the boundary walls, jumping up and down on them whilst moonying, and then leaping so far over the boundaries I need a pair of binoculars to spot him. (The moonying is a metaphor, although he does have real world form in this area).

My girl’s anxieties have been at full frazzle setting: the doctors still haven’t had their meeting to decide whether her back op will go ahead; a reading comprehension test at school has set off a million questions; and to top it all, she’s perfected a brand new addition to the list of things she repeats over and over and over and over again. (I’ll tell you about that one another day, when I get my mojo back).

Finally, marvellously, after 30 odd years of pretty much pain-free menstruating (*sounds ‘wimmins things’ klaxon*), I seem to have suddenly developed awful lower-back ache and atrocious stomach cramps to go with the whole bleedin’ bleeding kerfuffle. The wince-inducing, teeth-gritting, doubled-up in pain-causing, impossible to sleep kind of stomach cramps.

Bah!, grrr! and, indeed, ow! 

*retires to bed with a hot water bottle*

Video is The Cramps - Bikini Girls With Machine Guns

Clench

Today we decided to spoil the kids and take them to the dentist. It was much like any other Christmas family outing: it was expensive, the children got bored waiting for the main event, and my boy ended up being taken to the car to ‘think about his behaviour’.

My daughter’s typical Prader-Willi tendency to obsess over something and talk about it repetitively has been in overdrive lately. She’s been uttering her daily mantras of “Are my teeth going down?” and “I don’t grind my teeth, do I?” over and over like a buddhist rapper on speed. (For the record, she used to grind her milk teeth when she was little but stopped when she was about six, and has a lovely, non-worn down set of gnashers).

So in a sneaky pre-planned move, I made sure I was seen first today, in order to give my dentist the low-down on what she should and shouldn’t say to my girl.

With my new co-conspirator fully signed up, and my examination over, we called in my daughter for her appointment. And like a seasoned luvvie, my dentist hit her mark and looked her patient straight in the eye. “Well, you’ve been cleaning your teeth really well, they are absolutely fine, there is no evidence of any grinding, and they are not worn down at all!” she told her. “In fact, it wouldn’t matter if you DID grind them, which you DON’T, but if you DID, I would just make you wear a mouthguard at night, which is exactly the same as the retainers you wear anyway,” she added, in an excellent fleshing-out of her role.

I smiled, hoping this expert advice would be useful to me in my attempts to stop my girl’s dental-based perserveration. And we left, after wrestling our boy out of the waiting room, where he’d climbed over the chairs, pinched his sister, and been responsible for mid-to-severe levels of noise nuisance whilst we tried to pay.

Obviously, I didn’t tell my girl that I’d spoken to the dentist behind her back. And there was something else I kept to myself. Which was that the dentist had noted evidence that I was clenching my jaw and possibly...and it pains me to say this...grinding my teeth.

This will never be mentioned in front of her. NEVER, do you understand? Jesus, I’d never hear the last of it. Imagine if after all these years my daughter finally stopped saying: “Do I grind my teeth?” only to change it to: “Do you grind yours?”

Video is The Cure - Grinding Halt

Chronicles

I came up with a new non-sweary swear today. It was a tweak of Sylvester the cat’s “Sufferin’ succotash”. “Perseveratin’ balderdash!” hasn’t quite got the same ring to it, but saying it to myself in a lispy cartoon moggy voice possibly saved my sanity (although if anyone had overheard they would have thought otherwise).

You see, my daughter has been putting the persevere into perseveration this week. (Perseveration is the uncontrollable repetition of certain phrases and questions. It’s a common trait with Prader-Willi Syndrome. She’s done it forever, and ever, and ever, and ever, and ever, and ever...well, you get the idea).

Some of her questions and mantras have been around for a while, but what I realised today that one in particular is growing. It is having extensions added to it. 

I had a little search through the posts on this blog, and discovered the earliest recorded instance of the pick of her perseverations was in April 2011, when I noted that “Have I still got lots of teeth?” was high up in that week's Top Five of her repetitive sayings. Over the months, this morphed into “Do I grind my teeth?” and later: “Do I gnash my teeth. I don’t gnash my teeth do I?”, and then later still the addendum: “This tooth is worn down more than that one, isn’t it?”

A few weeks ago, I broke my rule of not engaging with the tooth questions after five times of answering them, and told her in no uncertain terms that she didn’t need to ask them any longer as she hadn’t ground her teeth together since she was little. She demanded to know exactly how long, and I came up with an arbitrary answer, which has now been tacked on. So the perseveratin’ balderdash now goes something like this (keep in mind this is a sample of my girl having a complete conversation with herself, answering all her own questions in a slightly exasperated manner, at the same time as directing all the questions to the silently teeth-gnashing me)...“Do I gnash my teeth? I don’t, do I? No, of course you don’t. Is this tooth worn down more than that one? It is, isn’t it? No it’s not. Do I gnash my teeth? I don’t do I? No, of course not. You haven’t done it for 12 years!” 

Ad. Bleedin’. Infinitum.

So I’ve started to have this thought. It’s kind of wicked. I’m going to have to think carefully about it, because it has every chance of backfiring. But I’ve realised that I probably have the power to shape the continuing growth of the Tooth Chronicles. What will the next clause be? And can I lob in something random, just to amuse myself?

I’ll report back in a few weeks. I’m thinking along the lines of: “You’re not a pterodactyl in a tutu.” 

Video is Edwyn Collins - Do It Again

Forms

Any parent or carer of a disabled child is used to forms. But that doesn’t make them any easier. 

They loom. 

There’s this underlying anxiety that the next time you fill out the form, the criteria will have changed, the rulebook will have been rewritten, and your child’s difficulties will be judged differently.

And then you start to wonder how on earth you’ll manage financially if the safety net of support for the disabled is downsized, loosened, or whipped away. I tend to picture myself landing face-first in the sawdust like Burt Lancaster in Trapeze. Sadly, I do mean Burt. I look more like him than I do Gina Lollobrigida.

Over the last few years I’ve filled out a few hundred pages of Disability Living Allowance forms. It has destroyed a little piece of me every time I’ve done it. Because when it comes to spending hours poring over the minutiae of a DLA application, there’s this thing you have to do: go negative. It’s a toxic process. You flip everything onto its head. Instead of the necessary positivity you need to cope with the challenges of disability, instead of the joy you take in every achievement, however minor, you have to wallow in what your child can’t do. 

My daughter turned 16 in October. So I knew there was a formidable form on the way. 
As someone with a disability who was previously claiming DLA, her 16th birthday meant she would now be ‘switched’ to something called the Personal Independence Payment (PIP). 

We’d already had an initial ID meeting, where a very nice woman visited us to determine that we were indeed who we said we were, and that my daughter, although now 16, was not capable of dealing with her own claim or managing her own finances.* 
[*Two things: 1) They’ve been paying DLA for a good number of years now, so you would have thought the ID part would have been a given. 2) I think the sight of my teenager reading a Topsy and Tim book may have provided some clues for our visitor].

We were told to expect a PIP form once my girl’s birthday had passed. I’ve been preparing a little bit by downloading a 46-page guidance document from Disability Rights UK, because, hey, I know how to spend a fun evening or two.

The big brown envelope hit the mat this week. My heart sank, but I tried to convince myself I was geared up and ready to go. I'd sharpened my pencil. I was prepped for the PIP. 

The covering letter was headed Personal Independence Payment. It blah blahed on a bit about me acting on my daughter’s behalf, and I jumped to the form itself, to see if it tallied with the guidance notes and scoring system I’d been poring over. 

It didn’t. It was weird. It didn’t seem to match anything. It wasn’t exactly like the previous DLA forms I’d filled in, and it wasn’t like the PIP form I’d been expecting. What the hell was it?

I went back to read more of the detail in the letter. And then I twigged what had happened. They’d flipped it. Or to be more precise, they’d faffed it. The telling phrase was as follows: “We’ve decided to gradually introduce Personal Independence Payment for existing DLA claimants into just a small area so we can monitor this new process.” Translation: “We’re hopelessly behind and the backlog is horrendous.” So what I’ve actually got is the old Rising 16s DLA form. And God knows when the PIP will pop up. 

So I suppose I'd better stop blathering on here, and get on instead with the new type of form that isn't exactly the new type of form I was expecting. 

In the words of Hall and Oates “She’s a maneater!”. Hang on, that's wrong. I mean in the words (ish) of Captain Lawrence Oates: “I’m just going in and may be some time.”

Video is Django Django - Waveforms

Furtive

I frequently make furtive phone calls. Sometimes I stand at the bottom of my garden, sometimes I lock myself in the loo, and on occasions, I’ve made them from the middle of a vaguely soundproofed homemade duvet cave. (I would like to point out that I am neither a drug dealer nor an adultress, and my motives are pure, even if my methods are a little sneaky). What I am doing when I get my furtive on is trying to escape my daughter’s superhuman hearing skills.

My girl has Prader-Willi Syndrome, which means her muscles are weak and the part of her brain that should tell her she’s full up doesn’t work. But one thing does work, well enough to pass the Justice League and Avengers Entrance Exam: her ears. 

Her ability to hear conversations from across the room, the house, and even from a different floor, is amazing. I’m considering fashioning her a lycra suit, some shiny pants to wear on the outside, a cape, an eye mask, and a symbol to signify her powers. Not Superman’s S or Batman’s bat - it’s going to have to be an earwig. Because earwigging is her great skill. You cannot start a conversation with anyone without her popping up like a meerkat, blurting out her Earwiggingwoman catchphrase: “What do you MEAN?”

This makes it difficult when we have appointments or meetings or are arranging visits. Because in order to make life easier, sometimes I need to do a bit of explaining beforehand. Last week, I needed to tell the new dentist that on no account should they mention teeth grinding, as my daughter is obsessed with whether she grinds her teeth or not (she doesn’t), and a careless use of the ‘g’ word could set her off repeating grinding questions for weeks on end. (I’m shuddering as I imagine what would have happened if my girl had heard this conversation. “Grinding? What do you MEAN, grinding?”). The other day I needed to check with my friend that they were still coming over on Friday night for a curry, because if I tell my daughter it’s happening and then it doesn’t, we will have a meltdown strong enough to liquify poppadoms at 500 paces. (“They’re not coming? What do you MEAN, they’re not coming?”)

So whispered conversations have be sneaked in. The furtiveness is not only necessary, it’s sanity preserving. Particularly in the summer holidays, when PWS serial repetitiveness is unbroken by the school day, and has got to the stage now where it is inside my head and making my eyeballs rattle. There are just over two weeks, or to be more precise 15 full days, to go. I continue to be unashamed of my countdown. 

Fifteen. What do you MEAN, fifteen?

Song is Dr. Feelgood - Sneakin' Suspicion

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

Unhinged

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.”

Video is Eels - Unhinged

Related posts: 
Meltdown
Wave
Dam

Stuck

“It’s because I’ve got Prader-Willi Syndrome!” my daughter yelled at her classmate, slamming her hand down on the table.

Fathers

My daughter's Father's Day present to her dad - a 'picture tile'
she made at Guides. This photo was taken a few years ago when
the 'grizzled' look could only be achieved with facepaints.

I give my dad a really hard time. He’s the only person I do this with.

My excuses are many: he cuts the tops of his socks off ‘because they’re too tight’; he’s of the generation where he thought it was perfectly acceptable once he was retired for my mum to make his packed lunch for him before she went to work; and when my son was born (after I went in the hospital at midnight, had him at 3.30am and was home, slightly shell-shocked, by 8.30am), he asked me: “Are you going to stay in bed all day?”

Of course, there was also that time when I was 16 and I had to explain to him what a vibrator was, after he said everyone at work seemed to have found it amusing when he told them he’d been decorating all weekend and put up a dildo rail in the hall. (I’ve been unable to look at a dado rail without laughing for the 24 years of my life since, and I fully expect this state of affairs to continue). 

But I love him to bits, despite my merciless teasing. I wrote about it on Father’s Day last year (see previous post, Grandad), so today I want to share a thought or two on my husband, what with him being a father, an’ all.

I love the fact that when my daughter was born, the nurse handed him scrubs and told him to wait (meaning that she’d find him somewhere to change) he stripped off down to his pants in a busy hospital corridor.

I love that he will instantly accept our son’s order to chase him round the house within three seconds of getting in from work.

I love that he will sit and listen to a series of never-ending questions, repeated over and over again by our daughter as thoughts get stuck in that little bit of Prader-Willi Syndrome glue in her brain* (*This is a metaphor, not a medical fact, all right?).

I love that he tells a cracking bedtime story.

I love that when I’ve been sad and low with stuff that life has slapped me in the face with, he’s always known when I’ve needed to be held, needed to talk, or needed him to whisk the kids off somewhere.

I love that he’s as proud as I am of our beautiful, unusual daughter.

I love that he’s a son his mum can be proud of.

I love that he loves me, and that I know this with more certainty than I know anything.

Boy, am I on the right side of a good thing.

Video is The Fleshtones - Right Side Of A Good Thing (which owes a tip of the hat to another fine fellow and father @twrafferty, whose birthday it is today).

Choices

My daughter tied herself in knots today, struggling with choices.

She was red-eyed and wild-headed when she got home from school.

Her teachers are trying to gently wean her off her current obsession with Hello Kitty by trying to get her to occasionally choose something else when she has the option. 

She’s so single-minded about her inexplicable love for the Japanese animated cat character that she’s announced she doesn’t like anything apart from Hello Kitty.

So the innocent suggestion that maybe she could pick a different picture to be used on her reward tokens went down like a cat in a sack in a well.

The tokens are little laminated pictures that the teachers stick on the wall of the classroom under the pupils’ names when they complete good work, or behave well. Unsuprisingly, my daughter’s icons have a feline theme. And she really didn’t want to change them.

We had a good hour of discussion on the matter. I say discussion, it was like looping the loop on a verbal rollercoaster and ending up back where we started, slightly out of breath and with a headache.

After some further contemplation, however, she suddenly voiced a new mantra.

“I am going to try and be good with choices, Mum,” she informed me. “You have to learn to make choices, don’t you? That’s what I’m going to do. I’m going to try and choose different things. Because you need to choose, don’t you?”

I agreed. The first time she said it, and then the second, third, fourth and fifth. By the 50th, despite my ability to filter out the repetition (a skill I’ve developed over the years to cope with the perseveration element of her syndrome, although my Mum would say I’ve always had ‘selective hearing’) I’d lost interest and much of the will to live.

I patiently explained to her that perhaps she’d talked about this whole thing for a little bit too long and that it might possibly have started to become annoying.

She tipped her head to one side, raised her eyebrow, and gave me a withering look.

“It’s because I’ve got Prader-Willi Syndrome, mum. You should know that by now.”

Video is Fat Boy Slim - Weapon Of Choice

"You can go with this,
Or you can go with that".

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Magazine 
Perseveration