Tug

I was worried about my daughter’s class this year.

I wondered if the change from six pupils to ten would affect her participation level and her confidence. I thought she’d feel swamped and overwhelmed. Yes, yes, I know, those of you with kids at mainstream school in a class of 30 or more may be raising your eyebrows higher than Spock lookeelikees at a Star Trek convention, but you’ll just have to suck it up.

It turns out my fears were unfounded. Yes, she’s had days when random anxieties have surfaced. Yes, she’s had days when one of her classmates has been telling her some tall tales which I have to unpick and unravel. But that could happen in any sized class. 

It’s coming up to the end of the school year, and her satellite class, cocooned in their little unit at mainstream secondary, have worked well together. I’ve seen it for myself: I sat at the back of the classroom one morning and watched a lesson, and saw how the teacher and teaching assistants tailored their questions and tasks, whilst keeping them engaged and making them all feel part of the group. This is officially No Mean Feat.  

It was sports day today, and I followed them round the field, cheering them on as they took part in different activities. I watched as they bowled at cricket stumps, threw foam javelins, hoofed some penalties, hopped, stumbled and crawled along in the sack race, and displayed all manner of interesting techniques in the long jump (my daughter’s consisting of approaching the sandpit, pulling up like a horse refusing at Becher’s Brook, then hopping an enormous three inches).

They were a gang. An odd, gangling, ambling, endearing, excitable gang. In each activity, before and after they’d taken part, they high-fived, cheered, chatted, giggled, supported, and encouraged eachother. My girl was sometimes on the margins, when she switched off for a day-dream, but that’s just her: it took me many years to realise that the sight of her sitting on her own, just outside a ‘group’ shouldn’t squeeze my heart so much, as she is often quite happy being in her own little bubble. There were times this afternoon when she was in the bubble zone, but mostly, amazingly, she was in the middle of the gang.

She even joined them for a ‘sprint’ race.  This involved her lolloping along at a very slightly faster pace than her usual saunter (and coming in last by some distance), but for the girl who consistently, insistently ‘doesn’t do running’, it felt like watching Usain Bolt. Usain Bolt in slow motion, after a career-destroying injury, but hell, you take what you can get, and that’s a good take. 

She did it because of the gang. I love them. They’re shit at Tug Of War, though.

Song is Candi Staton - I'll Drop Everything And Come Running

Ears

A little blush spread over her face when her name was called out. 

My daughter shyly accepted her medal and One Direction pencil set. The award was for being one of the best dancers at yesterday's Prader-Willi Syndrome Association UK South East Summer Bash. She should have dedicated it to her ear defenders, which she’d fished out of her dad’s toolbox to take along.

“I’m not dancing unless I wear them, because otherwise it will be too loud,” she announced. (‘Being too loud’ is a bit of a thing. This can sometimes be difficult in our household, where the default noise level is set somewhere between raucous and I-can’t-hear-myself-think).

So we took the DJ-like headgear, which had a positive effect on my daughter’s reticent dance floor moves. She wrung her hands with excitement, rocked gently from one foot to another, and even threw some small shapes.

I could bust some moves right now, thinking of her small-but-perfectly-formed wig-out. 

The event was the second PWSA family get-together we've attended in the space of a week. Things have been so hectic around here that I haven’t even had time to tell you about last Sunday’s PWSA picnic up in Manchester, where my girl was thrilled to discover that her PWS BFF had surprised her by making the long trip up (we'd cheated by spending the weekend with relatives who live nearby).     

I can sum both events up for you, though: I've never found it easier to talk to people about our wonky world. 

All these PWS tiddlers, middlers, teens, mums, dads, grandparents, and mates... this huge part of our life that is so abnormal to everyone else, isn't to them. 

Some of them have only jumped on the Wonky Bus recently, others are season ticket holders. We're all aboard, it's a bumpy road, and yes, on steep hills, I don't always trust the brakes. So why the hell shouldn't we ding the bell and park up for a party every now and again?

I've posted some photos from yesterday. I’d include some from last week, too, only my camera card had a meltdown. I don’t care - I can remember my girl smiling, just like yesterday, and that’ll do me.

Done

Yesterday, I spent a splendiferous evening in the cautionary company of Mark Oliver Everett and his band, better known as Eels. It was a stunning gig, as Eels gigs always are, whether E is in wild hedgerow beard/boiler suit/ pilot goggles/get-your-freak-on mode, or, like last night, in tidy facial fur/lounge suit/wry-but-sensitive/‘bummer’ setting. (For American expressions that don’t travel very well, bummer comes in third, fag beats it to second spot, and fanny pack is the undisputed all-time winner).

My friend, Dave ‘Dog Faced Boy’ (named after an Eels track containing the immortal couplet “Ma won’t shave me, Jesus can’t save me”), accompanied me and Mr Drakeygirl to the gig, arriving at our house a couple of hours before we set off, thus allowing time for some enjoyable blathering and nattering.

It was the first time my kids had met Dave, and he was made to feel welcome, sort of.
My son, aged five, completely ignored him for two hours, choosing instead to practise his superhero moves in front of a Batman cartoon. But he did activate his show-off gene to throw a couple of quick moonies Dave’s way before we left.

My girl, on the other hand, started off well but faded. She sidled out into the garden, where we were sitting in the sun having a chat. Her Prader-Willi Syndrome means she doesn’t quite ‘get’ social conventions and the art of conversation. But her nose was bothering her. She knew I knew Dave from ‘Word dos’, meet-ups organised by a bunch of music fans dating back to the days of the now defunct Word Magazine. (“I told my teacher you were going to a Word do, and she said it must be a work do, but I said no it’s a Word do, but she said I had got it wrong and it was a work do, but it was definitely a Word do, wasn’t it, Mum. What is a Word do?” has been a long-running repeat in recent weeks). 

So she sat next to Dave, pointedly reading out the title of her book, and shooting him sideways glances to see if he was impressed that she was nearly halfway through “Make Friends With Poppy The Brownie”, and consistently interrupting us for about 20 minutes, checking everyone's age, and loudly enunciating nuggets of information she thought Dave might be interested in, like: “I speak well for Prader-Willi, don’t I?”

After she’d shared everything she felt necessary, she looked at our guest and nodded at me, before standing up and announcing: “I’m going inside to read. I’ve done Dave, now.”

Video is Eels - Parallels (live at the NYC Apollo). Before you ask, no, Dave would have had to have come round a damn sight earlier than two hours before the gig if we'd have been going there. But it is from the current tour...

'Word' not 'Work' blatherings on music (and other associated or often completely unassociated subjects) now take place online at the aptly named The Afterword site.

Dave 'Dog Faced Boy' is responsible for an excellent podcast entitled 33 & A Nerd, and also the driving force behind The Afterword Podcast - both are things you should really be downloading if you have any sense. He also has a blog, entitled: A Dog Faced Boy's Tail. Oh, and it's his photo at the top. And now, you have all the information you could possibly need. Thangyouverrymuch. 

Giggles

There was something delicious about the gift my daughter proudly presented her dad with for Fathers’ Day today. 

This is the girl with Prader-Willi Syndrome, a condition which means she never feels physically full up but has to be on a strict diet. The present, bought from a school sale, and of her own choosing, was a book. It featured recipes like a banana dessert involving six tablespoons of butter and brown sugar and was entitled: “Eat Your Way To Success, Fame & Fortune.”

She gave it to her dad at lunchtime, as she’d only just returned from a return sleepover at her PWS BFF’s house. She’d been treated to a healthy low-fat tea, a low-calorie popcorn evening treat, and a fruit-heavy breakfast, with no “Eat Your Way To Type Two Diabetes” meals involved. Because PWS BFF’s mum doesn’t have to be told about the food thing, obviously.

Prior to the visit, they'd partaken in email correspondence about what film they'd watch. PWS BFF had sent the following message:

"Please could you bring ladybirds game saturday to my house in case we want to play . Here are the film 
Choices that we can watch. 
1. Miranda 
2. One driection this is us 
3. Katy perry part of me
4. Peter pan 
Tell me what you want to watch."

Followed, a minute later, by a panic-stricken caveat: 

"Not Katy perry. Dont choose that one"

I got edited highlights of the visit. The menu was, of course, top of the “What I Liked Best About My Sleepover” list. Food is top of “What I Liked Best About Anything” lists. But taking her friend's dogs for a walk ran it a close second, as did playing games, and watching Miranda. But NOT Katy Perry. Sod her.

They'd also taken great delight in showing eachother their books. 

“We read my ‘You Are Special’ book I took, Mum,” my daughter told me, eyebrows raised with high excitement. “I knew she’d like it. She said: ‘Why am I special?’, because she’d forgotten for a minute, but I told her having Prader-Willi makes you special. She is special, like me.”

I’d sent a text to PWS BFF’s Mum earlier this morning, warning her that my girl tends to take her retainers out of her mouth and instead of putting them neatly away in their box, drops them wherever she happens to be, which can prove tricky, as the blasted things are transparent. The reply came back almost immediately: ‘Many giggles from them today as they played ‘Hunt The Retainer’.

And it was the chuckles that were mentioned again when PWS BFF’s dad dropped my daughter home after her night with her friend. “I don’t remember hearing my girl laugh so much,” he said.

I’m glad she had a good old giggle with her mate.

Video Is Toots & The Maytals - When I Laugh

Wallop

The sound of the post dropping onto the doormat is a hard sound to call. Sometimes, it’s the wallop of an eagerly anticipated delivery, more often its the flop of overly-chummy junk mail, and occasionally, it’s the thud of doom.

There have been more flops than wallops lately, as the actress said to the underperforming bishop. Targeted missives this week have included an unsolicited free copy of The Sun, which was as welcome as a turd in a punchbowl, and a letter from the Department of Work and Pensions which sent the the fecal quotient in the fruity drink receptacle right off the scale.* (*More about this letter another day, because hell, it’s Friday night and I don’t want to be angry, you wouldn’t like me when I’m angry).

So I consoled myself by looking again at one of the more recent joyful deliveries. No, it wasn’t something from Ann Summers -  it was a good, old-fashioned letter, which had winged its way all the way here from Australia, and the writing wasn’t even upside down or anything.

It was from my niece, Jemma, who is currently taking a gap year after graduating from uni. And it wasn’t for me, it was for her cousin - my daughter.

It was written, simply, and clearly. It didn’t over-complicate, but it didn’t patronise. It was full of care and chat and information and questions and praise and love.

The idea of it coming from the other side of the world and that her cousin might be in bed because it was night-time there, thrilled and fascinated my girl.

Jemma spoke about her travels and seeing a white wallaby and a real life Tasmanian Devil, as opposed to the Tasmanian Devil in five-year-old boy form that lives in our house. 

She wrote how she’d met a young lad with Prader-Willi Syndrome (the same condition as my daughter) at a special school where she is volunteering, and had impressed staff with her knowledge of the syndrome (...“only because of my special beautiful cousin”, she admitted). 

She finished: “I hope you are OK and you are happy. Give your mum and dad and even your brother a BIG hug and kiss from me! And don’t forget Grandma too!”

The last bit made me well up, mainly because I am becoming a right wuss in my old age, but also because I knew Jemma hadn’t forgotten Grandma herself. She’d already sent an equally carefully-written letter to her beloved Grandma, my mum-in-law, which was simply wonderful. Grandma loved it, and I know this to be true a hundred times over, because I’ve stationed it on her coffee table, and it gets unfurled at very frequent intervals and read with delight, because Grandma has dementia and can’t remember having read it before. Every time is like the first time, which is a bit heartbreaking, but, even so, a bit wonderful. Because it’s that good.

G’day Jemma, you flamin’ galah! You’ve made a young girl, an old lady, and this soft nelly in the middle, very happy.

Song is Joe Tex - S.Y.S.L.J.F.M. (The Letter Song)

Karma

Sometimes I’m terribly British. Not in the swivel-eyed, frothing at the mouth, UKIPping sense, more like in the queuing in an orderly fashion, being faintly embarrassed by fuss sort of sense.

We spent the afternoon at a school fete, watching tugs of war, taking potshots at coconuts, and launching water bottle rockets into the air.

The kids both took part in a rugby try-out session: my daughter ambling along, making doe-eyes at the nice man who came to talk to her at school about the game a few of months ago (see blog post Nuffink), my son discovering an unusual technique of putting his hand behind his back and running head first into the tackle mat like a baby rhino.

I bought some tickets in the raffle (and here was where the British bit kicked in). I’d asked the seller if it was a pound a strip, and she nodded, and when I asked for two strips she painstaking wrote my details on the tickets before not giving me any change. It was then I realised she’d meant a pound a ticket. So I stood there, all British, with my £10 worth of raffle tickets, feeling like a numpty, kind of wanting to ask to give my overspend tickets back. And then I thought, sod it. It’s a good cause: schools are always short of cash for decent play equipment and the like. Plus, it’ll be a bit awkward. So I left, with my ten tickets, and a purse that was considerably emptier than I’d planned.

And then the plaguing started. “Are we staying to hear when we win the raffle, Mum? What are we going to win? When are they calling the numbers?” My daughter was in full Repeating Zebra mode. Let me explain this further: the repeating bit is the perseveration common in children and adults with Prader-Willi Syndrome - an anxious fixation on a subject, usually displayed by the incessant repetition of the same question over and over again. The zebra bit is the slightly autistic, everything is black and white, there are no shades of grey thing. In this case, we had bought raffle tickets, ergo we would win a raffle prize.

She continued: “We are going to win, aren’t we? They will pick our number won’t they? When are they picking our number?” And then my son started joining in, bouncing alongside her on the tightrope of my patience, which was already sagging from the nagging.

So I was forced to take a deep breath and launch into a explanation of how you cannot expect to win every time you enter a competition. I patiently told them both how there were hundreds of people at the fete and only a few would have their numbers picked out and would win a prize. I explained that we would not enter any competitions at future events if they couldn’t learn to lose gracefully, and to accept that somebody else’s good fortune is not a reason to be sad or angry.

So of course we won.

I suppose it was karma. By being overly generous, albeit by accident, and buying those extra tickets by mistake, a bit of good luck came my way. It was, of course, one of the ‘extra’ numbers wot won it. A haul so sizeable* that I had to bring my car round of the back of the school because we couldn’t carry it all. 

"I told you, Mummy. You see. I told you."

"Yes, yes you did."

"I was right. Usually I am, you know."

*A Homebase charcoal BBQ

Family day out at Thurleigh Farm Centre (worth £35)
£20 Morrisons vouchers
£20 hairdressers’ vouchers
2 x Personal Training Sessions
Bottle of champagne
Two bottles of wine
A large, potted fuschia 
Two costume jewellery rings
24 litre Asda cooler box
6 piece plastic picnic set
Waterproof backed picnic rug
Thermos-style coffee cup
‘Wimbledon’ sunglasses

Video is John Lennon & The Plastic Ono Band- Instant Karma

Polling

You’ve heard of Gallup Polls? Well, my daughter is slowly perfecting her own similar method of gathering data. Mind you, with her day-dreamy, meandering walk, it’s not so much a Gallup as a Lollop.

We’ve been attending a few PWS events lately, organised by parents, volunteers, or staff from the Prader-Willi Syndrome Association UK. And my girl’s Lollop Polls are stepping up a gear.

The questions at today’s sunny, sociable PWS picnic at Coram's Fields in Central London, weren’t just the usual “What’s your name?”, “Have you got Prader-Willi?”, “How old are you?” and the slightly random “How many teeth do you have?”. Oh no, a new, astonishingly scientifically accurate, belter of a question has been added to the repertoire...

[Before I repeat it for you, I should check if you’re familiar with the genetic doobriewotsits of PWS. Wrap your noggin around this explanation:

Three PWS girls, and Trevor (Professional Photobomber)

PWS is caused by a baby not receiving active paternal genes from a specific part of one chromosome (chromosome 15). Around 70% of all cases of PWS are caused by a deletion, which means a tiny part of chromosome 15 inherited from the father is missing. Around 25% of cases are caused by maternal uniparental disomy (UPD), which means that instead of taking one copy of chromosome 15 from their dad and one from their mum, the child has ended up with two maternal copies. The remaining 5% of cases are caused by an imprinting defect.

OK? So far, so clear? I’ll let you into a little secret, I wasn’t aware of the third cause, the imprinting defect one. (It sounds a bit like the daily battle I have with my Canon inkjet, to be honest). Consequently, my daughter hasn’t heard of this either, so it didn’t figure in today’s super duper question. If it’s OK with you, let’s not mention it to her. I’d feel a bit like the confused cardinal from the Spanish Inquisition: “The chief cause is deletion...and UPD...the TWO causes are deletion and UPD....and imprinting defect...the THREE causes are deletion, UPD, and imprinting defect....AMONGST the causes are...I’ll come in again shall I?” ]

Her question to PWS children today (or to their parents to answer on their behalf) was this: “Have you got the Prader-Willi where it’s a little bit missing from the chromosome like me, or have you got the rarer one where its a double one from your mummy?”

That’s a cracking query, isn’t it? (The results of the poll were pretty much in line with the statistics mentioned above, by the way). She’s been quizzing her dad about PWS and its causes lately, and to be fair to him, he sounds like he came up with a simplified summary that the bird from Nina And The Neurons would be proud of. Thinking about it, he does take a rather special ‘one for the dads’-type interest in Nina. Mr Drake, if you’re reading this, no, it would not be an anniversary treat if you buy me a lab coat, tell me to put on a Scottish accent, and inform me of a perplexing problem that can only be fixed by me using my sense of touch.* (*I realise this makes little or no sense to non CBeebies viewers, because you have a life).

Where was I? Oh yes, the picnic. So I was proud of my daughter today. Coping with train delays. Asking her questions. Shyly answering other people’s questions. Holding a lovely PWS baby boy, who we kidnapped and held cuddle hostage until he had to be prised from our arms (see photo, top right). 

And the good news is, we’ve got not one but two more PWS get-togethers this month: a picnic in a park in Manchester, which is nicely timed to coincide with a visit to relatives oop north, and a party in a Mormon church hall in Enfield where in order not to offend the Salt Lake City brethren we can’t drink tea or coffee because they think caffeine is the seed of the devil, or sumfink like that. I am, of course, planning to mainline Red Bull before I go.

Song is Black Heat - Questions And Conclusions

Click here for full details of the PWS family events in June