Rounders

It’s Saturday night, and my joie de vivre has allez-ooped en vacances. 

I have zig zag lines appearing in my peripheral vision, aching ribs, and Special Needs Fatigue.

The main reasons for my symptoms are as follows:

• I’ve been on my hands and knees for an interminable length of time looking for my daughter’s see-through retainers on a stripy carpet.

• I collided very heavily with the ground playing rounders last Sunday (once whilst making a spectacular diving catch, and a second time whilst falling over myself on the way to first post) - and six days later it still hurts when I do pretty much anything.

• I have spent the evening reading a 46 page guidance document on filling in a Personal Independence Payment (PIP) form (the much-dreaded replacement for my daughter’s Disability Living Allowance, which she will have to switch from once she’s 16, which is very soon). The process will, at some point, involve ATOS. Oh joy.

All this, and the only drink in the house is Tesco No Added Sugar Fiery Ginger Beer.

Song is The Holy Modal Rounders - Dame Fortune

Danish

Soren 'Captain' Kierkegaard (He's a Danish
philosopher, Jim, but not as you know it).

Let’s talk about Danish existentialist philosophers. No, wait, come back!

I saw a lot of slides last weekend. Facts and figures and lists and bullet points from a whole raft of presentations at the Prader-Willi Syndrome Association UK national conference are still buzzing around in my head. 

Like this one: body fat percentages in someone with PWS - even someone whose weight is under control - are 2-3 times higher than in the general population, with body fat accounting for 40-50% of their body weight. (That’s nearly as mind-boggling as the 40-50% of my body weight being entirely made up of Crabbie’s Ginger Beer. Although on second thoughts, the second fact isn’t very mind-boggling at all).

But it was a philosophical slide that made me stop and think the most. It was shared by Dr Susanne Blichfeldt, from Herlev University Hospital, Denmark, a member of the International PWS Organisation Scientific Advisory Board.

It was a summary of something written by Danish author Soren Kierkegaard (whose name, I now know, when correctly pronounced in Danish, sounds exactly like a sneeze).

It’s about helping. And the main thrust of it is this:

To help another person you need to understand more than he does, but first of all, you need to understand what he understands. Otherwise you cannot help. 

In other words, we have to try to put ourselves in their shoes, and to try to see the world through their eyes. If we don’t, we haven’t got a free U2 album’s chance of staying in my iTunes.

And that’s it, really, isn’t it, in a nutshell: understanding. It’s the holy grail for every PWS parent and carer. We want to understand. We have to be aware, to try to learn, and often to second-guess just what our children’s perspective on the world might be - what they see, what they feel, what they experience. 

We have to understand that if they can’t stop thinking about food, then it’s best to keep edible stuff out of sight wherever possible.

We have to understand that if they keep repeating something over and over again, it’s their attempt to get the expected answer and to make the world more predictable. It’s not just to wind us up. At least I bloody well hope not.

And that’s where the next bit of the slide comes in. Dr Blichfeldt summarised a further section of Kierkegaard’s thoughts on helping:

Patience is needed, and you have to accept that sometimes you are wrong. But you have to take care to find a person where they are and begin there.

Here's to finding the there.

Song is Wilco - Misunderstood, from the LP Being There. This is the live version from their brilliant Kicking Television Live In Chicago album. You'll want to thank me for nothing, nothing, nothing, nothing (etc.) at all, for picking this one.

Related posts: 
Conference
Flotilla

Flotilla

I  wrapped my arms around her and squeezed, gently.  A little wave of emotion had drenched her, and she was sobbing, into my chest. To be fair, my chest is large enough to comfortably accommodate several sobbers at once. Anyone’s welcome, I don’t discriminate. 

But I wasn’t concerned. My daughter needed just a minute or two for the wave to subside, for the tide to go out, and for her feelings to dry off. Her emotions had overwhelmed her. A fact that was hardly surprising, considering the weekend she’d had: two nights in a hotel, two days of activities with other PWS children and young adults, two PWS picnic dinners, two evening meals out, a bagful of cuddly toys won on the pub’s ‘grabber' machine, oodles of crafts, a game of bingo, two lots of dance workshops, and an entire weekend buddying up with her Prader-Willi Syndrome Best Friend Forever.

It did subside, quickly, and easily. She was right as rain by the time we drove out of the conference centre gates. Three hours later, after a tactical Maccy D tea stop (grilled chicken salad wrap - 330 calories, and pineapple stick - 37 calories), we were home. Low-fat hot choc slurped, tablet swallowed, teeth cleaned, retainers in, jim jams on, bed.
___

The packed weekend was the PWSA UK's first national conference for seven years. The event, in Derby, was spread out over two days, concentrating on under 16s yesterday and focusing on over 16s today. The Association subsidised conference fees to try to make it more affordable for parents and carers, although as a charity, its funds are limited. 

I really hope they make it a regular event.

It can be daunting, especially for new parents, to hear some of the tougher topics and scarier stories from professionals, carers, and other mums and dads, even when it's emphasised that symptoms and behaviours can vary wildly from child to child. It can be repetitive, when speakers tell you things you’re already very familiar with. Not every talk turns out to address the issues you were hoping they’d cover. At certain points, you might even begin to understand what a PWS emotional overload might feel like.

But there is always something that resonates. There’s always something that surprises. I found Medical And Dietary Issues advice from a team from a PWS multi-disciplinary clinic (God, how I wish there were more of those) to give me plenty of *ahem* 'food for thought'. PWS BFF’s mum said the Changes to SEN Education And The Law session was hugely useful. I’m sure everyone there took away something; nuggets of information, little treasures, lightbulb moments, ideas, practices, realisations, recognition, revelations. 

And there's always something funny: the mum who went into the adjacent bible conference by mistake, and dashed out pretty sharpish when they started talking about Psalm 24 instead of Chromosome 15; our theory that said bible class (99% female) looked remarkably like the evil WI convention from the film of Roald Dahl's The Witches; and the idea that the catering staff, decked out in old-fashioned black and white uniforms, were actually dinner ladies from the 1950s transported through time to serve us up our gravy. 
___

As the day came to an end, a few parents and other Prader-Willi teenagers and young adults, walking past us on their way out, noticed my daughter finishing up with her aforementioned 'it'salltoomuchforme' weeping session. One lad picked up her Froggy soft toy, and patted her back. A couple of people caught my eye and smiled back at me when I smiled at them, as my daughter’s tears wet my shirt, and her face continued to crumple and leak. They didn't think me callous for seemingly not looking overly concerned at my distraught child. I knew that they knew that it would pass and be forgotten about as quickly as it had started. They got it. They got her. They got us.

I know I always bang on about it, but I’m more convinced of it with every PWSA event that I attend: being there, being together, seeing so many people sailing the same ocean on the same wonky, wobbly raft as you, is special. Some of them will encounter choppier waters, some calmer. But knowing they’re there, bobbing along beside you, makes a huge difference. We can set off flare guns and chuck each other life-belts if needed. 

Knowledge arms us. We’re a goddamn flotilla.

Song is The Waterboys - Strange Boat

Conference

I am anticipating a good night's sleep. It's my second night at the Alfreton Travelodge, a hotel that thankfully has rooms far nicer than the desolate car park environs, which look the kind of litter-strewn wastelands regularly invaded by hoards of zombies in The Walking Dead. (Put it this way, if Egg from This Life had turned up with a trooper's hat on and told me to bash any approaching people in the head with a blunt instrument, I would not have been fazed).

My daughter is fast asleep next to me. Our girly road trip to the Prader-Willi Syndrome Association UK National Conference is proving as enjoyable and exhausting as I envisaged. 

Today was the first day of the conference, which consisted of a whirlwind of quick chats with old friends and new faces, a small amount of cooing over apple-cheeked babies, and a portion of teary wonder at the sight of an amazing PWS girl talking about her job working with a disability charity. In between were workshops and lectures on research, behaviour, medical and dietary issues, feeelings of guilt along the lines of: "Oh God, I should be doing THIS!", alleviated by feelings of relief along the lines of: "Actually, it's perfectly OK that we're doing THIS!" While all this was going on, my girl was shyly proud of herself for 'helping with the little ones' during the day's programme of events for PWS children. She and her Prader-Willi Syndrome Best Friend Forever (PWS BFF) were honorary volunteers for the day (which as far as I can gather consisted of joining in all the activities whilst wearing an association T-shirt, but hey, they were 'working', OK?).

Co-ordinating adjacent hotel rooms with PWS BFF and family proved to be a minor stroke of genius, as it allowed the two special-peas-in-a-pod teenagers to play Hello Kitty Yahtzee yesterday, and to watch Eastenders on the iPlayer tonight. And beam at eachother.

Two observations about Eastenders: 
1) The last time I watched it, about 25 years ago, there was some skinny, ginger girl shouting a lot. I found out tonight that the same, skinny ginger girl, now a woman, was still shouting. No sign of Mary the punk, though. 
2) Me and PWS BFF's mum, after drinking a couple of mugs full of Prosecco that had been nicely chilled in a Travelodge bathful of cold water, were pontificating about why the programme seems to fascinate our girls. I think I actually used the pretentious phrase: "It's a kind of a pantomime of social interaction." This amateur psychologists' babble balloon was swiftly burst by asking the girls directly why they liked it. One said: "Because of the shouting," and the other: "It's the swearing."

Tired, but happy, before retiring to her room for the night, PWS BFF checked 15 times with me that we would definitely be meeting up at 8am tomorrow in the Little Chef for porridge, just like we did today. My daughter then checked 16 times that my confirmations of the confirmation were confirmed.

Hopefully PWS BFF's dad won't lock her hotel key inside the room like he did this morning. And hopefully I won't be put at the front of a convoy of cars going to the restaurant for tea, blindly follow the sat nav instructions, and end up taking everyone needlessly up to the next motorway junction, only to drive practically all the way back to where we started, like I did this evening. That would be stupid.

Video is CW McCall - Convoy. I will pick a decent tune for the next post, I promise. First Duran Duran, and now this. What am I thinking?

Werewolf

I've been telling my son some werewolf tales as bedtime stories.

They were sparked by the glorious sight of the supermoon in the night sky, and the less than glorious experience of watching Alvin & The Chipmunks Meet The Wolfman (Damn you, Netflix, damn you!).

He was Wolfboy, I was Wolfmum, his dad was Wolfdad, and his sister was Wolfgirl. His 'really-need-to-know' questions were: if we preferred eating peoples legs, arms, or butts; if a silver bullet would kill us; and if we were shot, would we turn back into a “hooman bean” and be “nudey-rudey”?

Then he sliced in a couple of razor-sharp questions that slashed me right across the guts.

“Mum? Will my sister have Prader-Willi when she’s Wolfgirl? Will she have special needs?”

The questions took me by surprise. They sounded so adult, so perceptive, coming from the mouth of my little boy. What had made him stop and think about his sister’s condition? How much does he really understand about PWS, apart from her sweets and treats being a bit different to his, and her muscles not being as strong? And since when did he come over all empathetic?

I gave him a hug, and told him the only possible answer. 

“Yes, yes she would have special needs, and do you know what she'd be? EXTRA hungry. In fact, she’d be hungry like the wolf.”

Of course, now I’ve revealed this, I’m compelled to post that particular Duran Duran track. Which reminds me, if Simon Le Bon really does “smell like he sounds”, then he must be pretty darn rank.

Oh God, I’m so sorry. Do do doo, do do doo, do do doo, do do doo,  do-do doo.

Video is, well, you know what it is, and I can only apologise.

Lions

I’m sipping from a big mug of coffee, Royal Blood’s LP is blasting cobwebs from corners I didn’t know my house even had, and my children are somewhere off playing with lions. Life is good.

I suppose I should backtrack to the lions bit. They’re not actually playing with them. They’ve been packed off on a trip to a safari park, so what’s probably happening right at this moment is that my daughter is suffering mid-level anxiety over what to buy in the gift shop (which will turn into a full scale meltdown when she realises I forgot to give her any money this morning), and my son is laughing at baboon’s arses.

It’s Trip Day, the finalé of a four day church holiday playscheme. And, in a fit of utter selfishness, I decided not to take up the option of going with them, as some other, nicer, parents did. Nope. Amazingly, I somehow predicted that in the final few days of the six week-long summer holidays, I might feel the need for a bit of peace.

We’ve done OK, you know. On the plus side, it’s been sunny pretty much all summer, which has meant lots of picnics. My husband took some tactically-timed days off, providing park ranger duties when I needed to get on with freelance work. More importantly, Tesco have had Skinny Cow lollies (95 calories) on offer, and we’ve hardly seen a wasp. These last two plus points may sound inconsequential, but believe you me, the ready availability of my daughter’s favourite summer snack, and the lack of Jaspers, are Very Good Things.

We’ve managed, with a bit of luck, and a bigger bit of planning, to keep our PWS teenager and our non-PWS five year old entertained, with a few trips, a few parties, meeting up with friends old and new, a festival’s worth of film nights, and - let’s not skate over them - a fair few days of grand-scale boredom and bickering. 

Because, as important as it is to try to give your PWS child routine, structure, and meticulously-planned days, it isn't always possible. Sometimes you can't help it - you have to wing it. 

Like I did when I realised I was supposed to have sorted out fancy dress costumes for the kids for the next day at holiday club. On the theme of 'inventions'. A quick trip to Asda for some banana boxes, a roll of gaffer tape, some straws, and a print-out of the test card later, and voilà! (see photo above). Before you feel overly impressed with my creative parenting skills, bear in mind that my favourite part of this Blue Peter-style activity was wiping the smiles from their faces by telling them this was the closest they’d come to getting TVs in their bedrooms. Is this wrong?

Video is Royal Blood - Come On Over

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