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.
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".
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.
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?
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
"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.
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. 
