Tuesday, 30 December 2014

Social

A social worker called on us yesterday. 

Before you ask, we weren’t in the midst of a family breakdown, although by the time we get to the second half of the Christmas holidays it’s always a possibility.

I’d called the local Social Services Child Disability Team a few weeks ago, as I was preparing to get my head around the ‘care’ section of my daughter’s new EHC (Education Health and Care) Plan (the new document that will be replacing her Statement of Special Educational Needs).

The plan will be reviewed annually, but will be in place for her right up to the age of 25, so I really want this first one to be a thorough document that covers all the bases. She’s reached the age of 16 without us ever having any dealings with social services, but I felt the time was right to find out more about what support they could potentially provide. So I met up with the social worker last week, and she arranged to come and talk to my daughter yesterday.

“Why is she coming?” my girl asked me.
“Do you know what a social worker is?” 
“Yes, it’s like in Tracy Beaker, isn’t it?”, she said, referring to Jacqueline Wilson’s fictional character whose flighty mother regularly abandoned her at a care home called The Dumping Ground. I’m many things, but flighty ain’t one of them, believe me.
“Ah, yes. Well, that’s just a story, and there’s no way I’m dumping you.”
She looked disappointed. I ignored this, and continued: “Well, social workers are a bit like the ones in Tracy Beaker, I suppose, because they help children and young people.”
“OK.”
I took this to mean she deemed the visit was acceptable, and it turned out to be just that.

The social worker was friendly, and stayed for quite some time, allowing my girl to get over her initial shyness. She was treated to a detailed breakdown of the Christmas Tower Of Presents. And she asked my daughter lots of questions, putting her at her ease, speaking to her not at her, giving her plenty of time to answer, and listening carefully. She’s going to arrange to see her at school, too, which my girl was ever so slightly thrilled about.

“Well, what did you think?” I said, after our visitor left.

“Yeah, all right. It was just like in Tracy Beaker, Mummy.”

I’ve scooped my girl off to The Dumping Ground of her bedroom tonight, tired and happy after another visit today. This was just a social call, not a social services one, to see Scarlett, an adorable tot with Prader-Willi Syndrome who lives just 15 minutes away from us.

We went for sunny, chilly walk. Scarlett was snuggled up in a nifty backpack carrier, whilst siblings/dog checked out icy play equipment/pooped, in that order, you'll be pleased to know). We returned indoors, downed some scrumptious home-made soup, and played Monopoly. I got my usual baby fix, jacking up on a long cuddle, thinking how the world of social care and EHC transition plans is in the distance for Scarlett, and how her world is currently weighted more on the side of signing, physio and a walking frame - like my daughter's once was. 

Different stages, rolling on, all connected. 

Song is Ty Segall - The Connection Man

Saturday, 27 December 2014

Merde

Spot the PWS diner (clue, she's looking at her dinner, not the camera)
It worked. An edible Christmas dinner for 11, food on time, and a Prader-Willi Syndrome girl who coped amazingly well with the extra grub around, relished every morsel of her extra vegged-up festive first course, and went all dreamy when om nom nomming her Weight Watchers Christmas pud.

My daughter’s favourite gift was a suprise: tickets to Matilda The Musical. I didn’t think she could look more pleased, until I told her that her Prader-Willi Best Friend Forever will be going with her, too.

My son’s top booty was a Lego set from The Lego Movie. “OH MY GOODNESS, IT’S LORD BUSINESS!” was his exact response. I wasn’t so keen on it after it taking something like three hours to put together (although our progress may have been hampered by me having to pause after every single piece so I could a) blow my nose due to a horrible head cold and b) take a swig of Cointreau in a plan to drown my horrible head cold in alcohol.

My husband (manfully doing the present opening, Christmas dinner helping, and OAP parents taxi ferrying, and all this before heading off for a 12 hour night shift on Christmas Day), was kept happy with a rather excellently curated selection of LPs, even if I say so myself.

But I think I got the best present of the lot. This, this, this. It’s a piece of pottery my daughter made for me at school. It’s in the style of French potter Bernard Palissy, apparently.

I think I’m going to call it “Une Merde De Chien”. No, wait! "Les Turds Superbes".


Video is Cornershop - Good Shit

Tuesday, 23 December 2014

Ouch

It's not often you see your face on the BBC News website. Not unless you've murdered someone. Or put a cat in a bin.

A journalist from the BBC's Ouch Disability Blog contacted me and asked if I could write something about Christmas in a Prader-Willi Syndrome household. A version of it appeared on the BBC site today and my social media feeds went a bit lively (in a good way).

There were no sensationalist headlines, the edits were thoughtful and prioritised the facts about the syndrome, and included in the piece was a link to the Prader-Willi Syndrome Association UK website. These are all Very Good Things. But that's not what has made me smile the most today. What made me giggle, repeatedly, was seeing our photo published. Because, Dear God, the shoot wasn't smooth.

Because of work shifts, we only had a 30-minute window of opportunity when all four of us would be together before I had to send the photo off in time for the deadline. This was not long, when you consider I was introducing my mum to the intricacies of my heavyweight SLR camera. I'm not saying she's a technophobe, but her mobile phone is a plastic cup and a piece of string. And she never remembers to charge her string.

"Just press the button halfway down and you'll see a little square, which shows you're in focus," I told her. "Why is the square around the picture on the wall?" "Point it down at our faces!" "Ooh, now there are lots of squares!" "Right, press it now!"

Meanwhile, my son had a face like thunder. He had announced as I collected him from the school gate, a few minutes before, that he had "hurt his willy." I didn't ask why. Sometimes, I have found, when time is short, being incurious can save your sanity. The mysterious willy injury gave rise to a limp to Nanna's house which can only be described as epic. It was one of those terribly painful 'switching from left to right when he had forgotten which side was supposed to hurt' limps. 

So it took about 30 shots. The camera battery was about to run out. Nanna was about to run out of batteries, too. The boy was very close to me giving him a festive Homer Simpson tinsel throttling. 

Then finally, we got one. One shot. "I think he sort of smiled!" said Nanna. And lo, so it came to pass that her family portrait was published on the website of the British Broadcasting Corporation. 

You can see the article here

And if you're interested, you can read my original version below, which has the full quota of silliness, stretched analogies, and mild profanity that regular readers are used to...


C-Day is coming. We’ve boot-camped ourselves into a crackling squad of commandos, and Operation Christmas is go.

Excuse the military parlance. You’ve heard the phrase ‘An army marches on its stomach’? Well our household cavalry would collapse if we didn’t have our provision of provisions finely tuned.

We’ve got a special, 16-year-old squaddie, whose world revolves around food. And Christmas has the potential to spin out of control.

Our daughter Josie has a rare chromosome disorder called Prader-Willi Syndrome. Although too weak to feed as a baby, children with PWS grow to have an insatiable appetite, and never physically feel full up. But because their bodies can’t convert fat to muscle efficiently, they have to be on a strict diet, for life. If their food intake isn’t controlled, they could suffer from life-threatening obesity. 

So Christmas can be difficult. The Western world loads its trolleys up with treats and gets ready to give that regular belt notch a week off. We show our love for our family and friends by feeding them, treating them, and passing round the Belgian chocs (if you’re posh), or Ferrero Rocher (if you’ve got no class, like me).

Except that when you have a person with PWS in your family, you have to twerk. I’m sorry, I didn’t mean bend over and shake your behind provocatively, although I might decide to do that after a couple of Baileys. I meant to say tweak. You have to tweak.

If someone’s hungry all the time, but has to have a limited diet, you need rules. Meals need to be at set times, and they have to be consistent. My daughter knows that she always has a main meal, low-fat pudding and fruit for dinner. She knows when her snack times are. When she was younger, screaming tantrums would ensue if the clock ticked past the allotted serving time. Now, her response to tardiness is more prosecutorial: I am in the dock, and she’s the terrier-like chair of the Parliamentary Select Committee on Parental Failings, and I had better have a remarkably good explanation, or I’ll NEVER hear the end of it.

So chuck Christmas into the mix, with people popping round at odd times for a mince pie, with a table heaving with traditionally rich foods, with choccies going round like rationing has just been lifted, and the season to be jolly could be a fa la la la flipping nightmare.

So what do we do? Well, after 16 years of PWS planning we do what we always do: adapt, distract, substitute, and be sneaky.

Our advent calendar is a cloth one with pockets we fill up ourselves with no-sugar sweets (popped in one day at a time, so there’s no temptation for Josie to chomp through the lot). 

Christmas parties with buffets need preparation and vigilance. I ring up to find out about the menu in advance, we sit away from the food, and we pack my handbag with healthy back-ups in case the fare is lighter on carrot sticks than expected. I make sure the host gives me the nod on the ‘grub up’ announcement, so I’m always first in the queue, even if I have to elbow an elderly aunt out of the way.

Christmas dinner itself is served at its special-occasion-negotiated time of 1pm At The Very Latest (apart from that year we had a flood when my sink got blocked and started firing potato peelings at me).

Josie gets a Christmas dinner like the rest of us, but she has one roastie and two boiled potatoes; her turkey skin’s binned; the Cranberry sauce is eked, not heaped; it’s Brussels heavy (increasing subsequent trumping levels); and her Christmas pud is a low-fat version. 

We also keep back a few spoonfuls so if there’s a dropped spoon disaster and three peas go on the floor, then three peas are replaced. This is fair, and you HAVE to be fair with Josie’s food: there are limits to what she can have, so she is blummin’ well going to have every last scrap of it.

Ironically, Daniel, our six year old son, is a fussy eater, and has to be cajoled, persuaded, and occasionally threatened to eat his meals. Josie’s polishes her plate clean at one end of the table and he pushes the chicken round his plate at the other, and I sometimes dream, wistfully, of a mythical middle ground. He understands Josie has a special diet, and she understands that he has different ‘versions’ of food to her. So he’ll have chocolate spread on toast and she’ll have a smidge of honey, and they’re both happy with that. And he’ll sometimes sneak into the kitchen with me and ask for a biscuit, and I’ll tell him it’s OK, as long as he eats it away from his sister so she doesn’t get jealous. He’s kind of small for the special forces, but he’s signed up.

We do have to be sneaky. At Christmas, all our usual tricks are in place: pile up the meal on a small dish, so it looks fuller. Keep empty boxes of raisins and fill them up with half the number they’d normally have - then she can have an ‘extra’ box. Cut things in half and tell her it’s twice as much (so sue me). Clear food away sharpish, and get the board games out. Talk all through the Queen’s Speech to deliberately wind Nanna up - that’s good for half an hour’s distraction at least. This is a bit mean, considering Nanna not only makes a beautifully iced Christmas cake for us, but she also makes a delicious no-sugar fruit cake alternative, so her grand-daughter doesn’t feel like she’s missing out.

There’s one thing I’ve forgotten to mention: how much we ENJOY Christmas. Forget the planning - it’s second nature after all these years. It’s all worth it when I see my daughter’s thrilled expression as she catches sight of the glitter tracks in the garden from Santa’s sleigh. (I can’t think how they got there, and yes, Josie still believes). 

We’re lucky. Our daughter is currently a healthy weight and is relatively accepting of Operation Christmas rules. We know from others’ experience that food issues often escalate dramatically as PWS children get older and struggle with semi-independence. Some young people and adults with Prader-Willi will sneak through bins or raid the freezer and even eat frozen food if they can get their hands on it. Their families and carers will have their own military ops centre and battle tactics, and whatever works best for them is the right thing to do. 

I do worry hugely about how Josie’s days will be filled after school and college finishes. Will she have the structure, routines, stimulation, and distraction in her life that are vital to successfully controlling her food issues and ensuring her happiness and health? Is the right living environment out there? Will professionals understand her complex needs? What balance needs to be struck between her right to independence and how allowing her more choices could have a dangerous effect on her health? 

Oh, and will my son ever eat a Brussels Sprout?


Video is The Killers - Smile Like You Mean It

Monday, 22 December 2014

Dude

Oh, just eff off
I’m absobleedinlutely infuriated with Nativity 3 already, and I’ve not even seen it.

Tonight, a tired teenager with Prader-Willi Syndrome got her brain jammed and it’s all the fault of that particular film. It brought her fizzogg cogs to a grinding halt and caused an emotional breakdown. 

If it was Jimmy Stewart in It’s A Wonderful Life I could somehow engage more with the importance of it. But Martin Clunes in Nativity 3 (or Nativity 3: Dude, Where’s My Donkey?, to give it its full title) is not something that should cause any emotion apart from complete indifference and maybe, at a push, disdain. 

I unwittingly helped with the brain breakdown. I did what I should really have trained myself never to do, which is give a throwaway answer to what I realise now was a loaded question. I say loaded, what I really mean is that it was packing a revolver, a rifle, tear gas, pepper spray, a rocket launcher, and a Christmas cake made of Semtex. She knew the answer. She knew she wouldn’t like it. She asked it anyway, of course.

“Mummy, Uncle Mark will be buying me Nativity 3 for Christmas, won’t he?”
“Er, no, darling. It’s not out on DVD yet.”
“It is.”
“Um, I’m sure I looked this up for you the other day. Let me check. Yes, I thought so: it’s not out yet, and I can’t seem to see a release date anywhere yet.”
“It is.”
“OK. You need to listen carefully. It’s not out, so he definitely won’t be getting you it, because it doesn’t exist yet.”
“It is.”
I checked. Twice, because her certainty can sometimes have you doubting all powers of recollection and literacy.
“I’m sorry, sweetheart, it’s not out yet. But you can get it as soon as it is.”
“No.”
“What do you mean, no?”
“It is out.”
“I don’t know what else to say.”
“You don’t need to say anything Mummy, because my teacher said it wasn’t in the cinema anymore so it must be out on DVD. Last year Nativity 2 was, and Uncle Mark bought me it for Christmas, so he must be getting me Nativity 3 for Christmas this year because it’s out.”
“But it’s not out.”
“It is.”

At this point, I realised I was locked in an argument with a PWS teenager, where black is white and there is bugger all you can do about it. 

The tears came (hers, not mine, but I was tempted). I listened as she sobbed, and theorised, and insisted, and tied herself up in knots. At one point, she pronounced that Nativity 1 and 2 were going in the bin. This was followed up with the unexpected escalation of “I don’t like my teacher because she got it wrong and I don’t like my school because that’s where she got it wrong.” This crappy second sequel in a crappy series of crappy, cheap, Christmas films had turned into a huge emotional issue for her, as inconsequential things sometimes do.

So I wrangled her into the shower, washed and dried her hair (a tried and tested technique for moments like this, as the ‘discussion’ has to stop because the sound of the dryer is too loud). She calmed down as I helped her get ready for bed and gave her her hot chocolate.

It was all over. Sometimes, shutting the stable door after the horse has bolted is all you can do. No, wait, after the donkey, after the donkey has bolted. Dude.


Video Is Small Faces - Donkey Rides, A Penny, A Glass

Saturday, 6 December 2014

Kissmas

"Can we line up all the people with Prader-Willi?” my daughter asked, tugging at my sleeve.

“Line them up?” I visualised a Usual Suspects police mugshot-type scenario. “Do you mean take a group photo?”

“Yeah.”

So we did. The lining up consisted more of a coralling them into a haphazard, higgledy piggledy crowd, with Santa at the centre. It may or may not have been the real Father Christmas. 

Today’s party was a festive get-together organised by parents and the Prader-Willi Syndrome Association, held in a Mormon Church Hall. The church has kindly hosted the event for the past couple of years. The same white-haired Mormon elder as last year did a Clark Kent and vanished shortly before an American-accented Santa appeared. The kids didn’t seem to twig that he only came from the North Pole if the North Pole is ever so slightly north of the centre of Salt Lake City. ‘Santa’ also put his big black wellies in it, when he said to a young lad with PWS who was wearing a roast turkey hat: “You're going to make us all hungry, looking at that!” It was a PWS party. You know, the syndrome where people never physically feel full up. Trust me, Santa, buddy, they don't need a hat to make them feel hungry.

There was a cartoon character theme to today’s do. Most people dug out Spiderman T-shirts, or Frozen dresses. Spectacularly, one mum and daughter came as The Queen of Hearts and Alice In Wonderland. There were a few onesies, and a snowman. We had couple of tantrums, some umming and yumming over the tasty, healthy lunch, loads of sticking and glueing on the Make Your Own Christmas Cards table, and various levels of dancing, from half-hearted to seriously wild.

I love these get-togethers.

The icing on the cake, or rather the pineapple on top of the sugar-free jelly, was a special goodbye from a gorgeous little red-haired girl.

Solemnly shy when she’d arrived, she’d lost her initial bashfullness and latched on to my daughter. My teenager had happily mothered her, allowing her to sit on her lap, holding on to her tiny hand as they stood swaying on the dance floor. I’d watched them, grinning, remembering my daughter cuddling her as a baby, just a couple of summers ago. Here they were again, two beautiful girls, with the same missing slither of a tiny chromosome. One tiny, one 4ft 10 and a half inches tall. Happy to buddy up.

And now, my daughter’s rediscovered friend had pottered over to me on her own as I was gathering together our coats and bags. She took my hand, and started to chat, excitedly. I had to crouch down to hear her, ignoring the strains of Let It Go coming out of the disco speakers. (I also ignored my son, in my periphery vision, bending down and miming farts in a daring reinterpretation of the song’s lyrics. At least I hope he was miming).

She told me she’d just kissed my daughter on the cheek. And then she beamed and did the same to me. It was a little smacker I'll treasure.


Song is The Autumn Stones - New Kiss

Sunday, 23 November 2014

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 sayingsOver 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

Sunday, 9 November 2014

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

Saturday, 25 October 2014

Frenzy

The phrase ‘feeding frenzy’ is an interesting one. It usually comes up in two contexts: the first is when the tabloid media goes bananas over the latest celebrity scandal; the second involves sharks or piranhas. Just imagine if there was scandal about a celebrity who got eaten by piranhas - there’d be a freeding frenzy over a feeding frenzy...

Our life has included long, difficult, feeding frenzies that have nothing to do with Sun reporters or Great Whites. Feeding frenzies in a Prader-Willi household are a whole different thing.

For some PWS parents, they can be literal. They’re when a child gives in to their uncontrollable hunger and sneaks downstairs in the middle of night, and eats and eats and eats. The discovery of which ends in a frenzy of bolted doors, locked fridges, rage and tears.

For our family, the frenzy part has been more about us, the parents, than it has been about our daughter, the hungry one, who as yet has not discovered the illicit joys of night-time foraging.* (*Dear God, I mis-typed that and it came up with ‘the illicit joys of night-time Farage-ing’, which is possibly the most disturbing thing I’ve ever written).  

From the moment your child is diagnosed with a disorder that is so wrapped up in the issue of hunger and diet and overeating and satiety, you become frenzied about feeding. It’s fear, a fear that you will provide the wrong food, that you’ll fail to foresee temptations, that you’ll give them too much food, or too little, you’ll serve up things that are too fattening, or not fattening enough, that they’re missing out because you’re too strict, or that you’re making it tougher because you’re too soft.

You’re surrounded by it, enveloped by it, obsessed by it. And all the while you know that however much thoughts of food dominate your life (for eminently practical reasons), you’re a mere amateur compared to your PWS child. They really take the biscuit, if you’ll pardon the expression.

Your feeding frenzy isn’t constant, though. Just like the Government escalates and de-escalates terror threat levels from ‘substantial’ to ‘severe’ and back down to ‘chillax’* (*possibly), you learn to live with the idea that you have to supervise your child’s diet carefully and continually. You become so used to it, it becomes second nature, and doesn’t sit at the forefront of your mind all the blummin’ time. 

We’re lucky: our daughter, at the moment, despite being 4 foot 10 and half inches of stubborn, pretty much accepts the food rules. 

We appreciate this isn’t the same for everyone, and we know our frenzy levels may need to be raised to ‘ohmygodohmygodsweetmarymotherofjesusonaunicycle’ at any point.

But frenzies aren’t good for you, believe me. Whatever your circumstances, if there’s any way you can de-frenz, try your best. Food is a big issue. A huge, calorific, mountain of an issue. But it is only part of your life. And like all parts of your life, you will get it wrong sometimes, and other people will get it wrong sometimes, and do you know what? That’s OK. You’ll get by, with a little help, and less frenz.


Video is The Fall - Victoria (from the album The Frenz Experiment, you see). Thought I was going for The Beatles or Joe Cocker, dint'cha?

This post first appeared in the October edition of PWS News, the newsletter of the Prader-Willi Syndrome Association UK. They have a very informative website here.


Tuesday, 21 October 2014

Humming

When I collected my daughter from After School Club, they said she’d been a bit upset after her and Bethany had mixed up their mummies. I didn’t quite understand: Bethany’s mum is about four inches taller and four stone lighter than me. It was only when I was handed a bandaged-up Pringle tube that I twigged it was Halloween decorations they were talking about.

My girl had dried her eyes, but they were still a little red. There was an almost audible buzz of anxiety around her. It was electrical. It hummed and fizzled throughout tea, and then it short-circuited at bedtime.

“I don’t know if that’s my mummy!” was the first wire to go kaput. A second strand came loose: “I don’t want to walk to secondary site, I’m too tired.” Another wire pinged: “I think it’s my sleeping mask, I don’t think I’m sleeping so well when I wear it.” 

I could see what was going to happen and I could do nothing to stop it. The delicate cable ties holding the bulging bundle of worry wires running through her head had snapped,  and that whooshing sound was her hot tears hissing on the escaping sparks of anxiety. I hopped into bed with her, squidged in tight, and wrapped my arms around her as she sobbed into my shoulder. 

“I don’t want to be Catherine’s friend she says wants to be mine but I’m not her best friend she wants to go to a different school next year will I go to a different school I want to go with her but I don’t want to my back hurts Mummy I get tired when it’s PE and swimming I want you to put the sleep mask in the bin cut it up but I want to keep it in my drawer I want to wear it I don’t want to wear it I’m not sure about the sleepover next week I don’t know whether I’ll be too tired to go but I want to go I haven't done my thank you letters yet can I do trampolining we’re going to do trampolining but what about my back I really don’t think that’s my mummy I want to wear the mask Bethany does can you ask her mum to tell her not to wear it because I don’t want to wear it that my mummy I can’t remember who bought me the till for Christmas was it the year before last why is it broken can you find out about Sportszone I want to go on the bus to After School Club on a Monday not walk did I sleep well I’m not tired I am a bit tired I’m hungry Mummy.”

I made soothing noises, tried to address each jumbled up worry, and then gave up. Nothing was registering. She needed to cry. I had to let her. I had to wait. Half an hour later she had cried herself to sleep. I felt like doing the same.

This morning, I walked into her bedroom and pulled back the curtains. She sat up, swung her legs round and planted her feet on the floor, rubbing her eyes, sleepily. “Good morning, Mummy!” We smiled at eachother. There was no sound of humming, or buzzing, or crackling. A good night’s sleep had reset her trip switch. And mine.



Video is Portishead - Humming

Sunday, 12 October 2014

Comic

Oh, I thought I was the bees knees, today. I was quite insufferably smug. You’d have wanted to slap me. You will, I’m sure, be pleased to learn I got my comeuppance. 

We were at Nanna & Grandad’s house. My daughter was very talkative, but tired from a long walk yesterday that had left her absolutely cream-crackered. The domino effect of which was a bout of loud, repetitive sentences from her today, and a steamroller approach to talking over everyone else.

Not for the first time, I posed myself the question: how can I get my girl to understand why it’s better not to interrupt other people?

And it was then I had a light bulb moment, or actually, an Alan Partridge moment, as the phrase “Ah-ha!” did pop into my brain. This was my chance. I was dying to put into practice something I’d learned this week - and here was my ideal opportunity.

I’ve been on a course, you see, on Communicating With A Child Who Has Social Communication Difficulties. It was part of a series of Parent Training sessions for people caring for children with an ASD (Autistic Spectrum Disorder). And this week’s module had included a section on Comic Strip Conversations. I thought these were very clever: in simple terms, you draw stick people, and use speech bubbles and thought bubbles, to help the person make sense of conversations and interactions. 

Out came the biro, background smugness levels were engaged and set to overdrive, and in the white space on the bottom of the Sunday paper I scrawled my matchstick men masterpiece. 

I followed all the rules: sit next to your child so you’re working together on understanding and making the drawing (rather than facing them, where you’re in a dictatorial position); make it personal and involve them in the details (“Should your hair be long? Shall I draw glasses on you?); and keep it simple.

I explained to my girl that she needed to wait until Nanny had finished talking before she started a new conversation. I used the picture to show what happened when she interrupted, and how all their words ‘bumped together’ so nobody could hear what anybody was saying. 

She stared at the scrawled drawing intently, and looked at me closely. I shot my husband a knowing, raised eyebrow, mildly triumphant, ‘aren’t I brilliant’ kind of look. I’d done him an example comic strip conversation earlier in the week to show him what I’d learned on the course and explain the principles behind the idea. “It’s called Theory of Mind,” I’d lectured. “People with Prader-Willi and autism and other disorders can’t grasp the Theory of Mind - how other people might have beliefs, desires, intentions, etc that are different from theirs; how other people don’t see things in exactly the same way they do.” 

This was a Comic Strip Conversation. This was me, putting it into action. This was me, showing my daughter how even though she wanted people to listen to her, they couldn’t because they couldn’t hear her when she talked over them. This was me, being awesome.

My daughter raised an eyebrow of her own. “Why did you draw this picture, Mummy?” she asked, smiling slyly at her dad, having clocked my earlier looks to him. “Is it that course you went on where people draw things for their children? Why are you drawing them for me?” She giggled. 

She hadn’t heard a word. She hadn’t been listening to my pleased-with-myself explanation of how interrupting someone makes it hard for everyone to be heard. She’d been completely, utterly, single-mindedly, focused on my motives.

Which kind of punctured the Theory of Mind theory. She struggles with putting herself in someone else’s shoes so often. Just not today, when I decided to show off my shiny, new, technique. 
__

Oh, I probably should point this out: the top drawing was the one I did for my daughter. The one at the top of the page.



Song is Sir Lord Comic - Wha'ppen. Everything is copacetic, man.

Saturday, 4 October 2014

Three

The girls are tucked up in their beds, in a bouncy sea of airbeds, mattresses, and duvet sets featuring every known shade of pink.  Three teddy bear sleeping masks, the cause of much giggling when the girls tried them on earlier, are hanging up on the bedpost.

My daughter was 16 today. 

I swear there’s a sizzle in the air, from some of the moments burned into my memory today, like the ranch brand on the rump of a prize steer.

My daughter Skyping her cousin in Australia this morning, wringing her hands with excitement and pride that she was using her very own tablet computer.

Her first two emails on the device:
Hello Eve I got a tablet bit like a I pad I can email you more now. I can’t wait to see you later 
Hello manna [sic] it my birthday day eve and bethany coming later for going out for curry hut and film night and sleepover
Her arm, encased up the elbow in bangles, bracelets, and friendship bands, courtesy of her friend’s mum’s all you can grab trolley-dash raid in Claire’s Accessories.

My mum’s amazing Treasure Island birthday cake, complete with treasure chests made out of Milky Ways, and luminous blue jelly for the sea. And her low fat no-sugar fruit cake alternative for my girl. And the hours of work that went into them.

One Direction board game dares, including barking, moonwalking, robot dancing, roly polys, opera singing, and chicken impressions.

My girl, her PWS BFF (Prader-Willi Syndrome Best Friend Forever) and her AFC BB (After School Club Best Buddy) nattering on at the Indian restaurant; my daughter and her pal with the same unusual syndrome, her other mate with learning difficulties; all three of them together for the first time, talking to eachother, talking over eachother, all smiles.

Watching The Witches film, and being hula-hooped to a dizzying state by the circular conversations of: how witches aren’t real despite the characters insisting that they are; how if mice get squashed in a film, they’ve not really been squashed; and how Rowan Atkinson is an actor and is not actually Mr Bean.

The three amigas, jim-jammed up, squashed into the bathroom, cleaning their teeth. 

Oh yeah, and the guilt of thinking my seemingly malingering son’s ‘tummy-ache’ was rooted in jealousy. Said guilt kicked in like a mule at 3pm, when he was sick four times and had to retire to bed for the rest of the day.

I wouldn’t have changed a momentous moment. Well, apart from the sick bit.


Song is The Charlatans - Opportunity Three



Friday, 3 October 2014

16-24

Remember Club 18-30? The cheap package holiday people who welcomed binge-drinkers with open arms, and sold them budget bonking breaks where they were guaranteed to come back with letters after their names, just as long as those letters were STD?

Well, tomorrow, I’m joining the 16-24 Club. You won’t know what this is, as I’ve just made it up. I’m a long way past 24, an’ all. Let me explain.

Sixteen years ago today, I was packing a nightie and toothbrush into a bag. I was also checking the other bag that I’d been stubbing my toe on in the hall for a few weeks. In that one were sleepsuits, nappies, cotton wool wipes, and other babygubbins. The next day, October 4, 1998,  I was booked in at the hospital for an induction, to kick-start my tardy baby’s way into the world.

Twenty-four hours later, I was holding my daughter, forgetting the weirdness of an emergency Caesarian, and concentrating on the wonderfulness of thinking she was just damn perfect.

Another 24 hours later, I was craning my neck to see through the window of a door, where 10 metres away from my bed, on the other side of the glass, a paediatrician and his colleague were discussing my weak, floppy child. I was trying, unsuccessfully, to lipread, and at the same time knowing I didn’t need to. One look at their expressions and body language told me something was wrong with my child.

Twenty-four hours after that, I was parked by an incubator, shell-shocked, looking at the tubes and machines attached to my baby and not knowing what to think, what to do, how to help, why she couldn’t feed, why her muscles were so weak, what was wrong, what was happening, and when I would stop wanting to scream.

At the lowest, most awful point, when I thought she had brain damage and would never even be able to move, I had the worst thought imaginable (see blog post Secret). I was wrong. I was never more wrong and I never will be. 

The days became weeks. Some questions were answered, many were not, more were asked, and each day we tried to deal with what we had to deal with. 

We now knew our daughter had Prader-Will Syndrome. We didn’t know anything about it. Twenty four hours later, we knew too much.

The 24s continued. Twenty-four hours on, things might be different. Twenty four hours on, we might have a new challenge. Twenty-four hours on, we might have a triumph. Twenty-four hours on, we might have a new problem. Twenty-four hours on, we might have a laugh. Twenty-four hours on, we might be able to cope. Twenty-four hours on, she might smile. Twenty-four hours on, we might feel like giving up. Twenty-four hours on, it just might be a brilliant day. Twenty-four hours on, a meglomaniac double agent might try to assassinate the President and let off a nuclear bomb. No, wait a minute, I just went all Kiefer Sutherland on you, there, I do apologise.

Tomorrow, my baby is 16. When I fill out her PIP form I know I have to concentrate on all the things she misses out on and can’t do, and every pen stroke I make feels like a hateful betrayal.

But here, on this blog, today, every key I press on the keyboard feels GOOD. Beacuse I’m thinking of all the amazing things she has achieved: the rolling, walking, talking, laughing, growing, learning, dancing, loving, being. Being herself. Just that.

Tomorrow our daughter is 16. Tomorrow, she will astonish me somehow, like she does every 24 hours. We’re going for a curry, she’s having a sleepover. I’ll be up until midnight tonight loading up then wrapping up her tablet computer, and I can’t believe we’re here, at this point, with this life.

We’re going to light 16 candles and carry on taking things 24 hours at a time. Like we always have, and always will. 

That’s us. Club 16-24. We don’t penalise anyone for having extra baggage, and there are free Pina Coladas. Or at least a pint of Cobra and a stack of poppadoms.


Video is Joan As Police Woman - Holiday