Saturday, 30 August 2014


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 finalĂ© 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 voilĂ ! (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

Monday, 18 August 2014


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

Tuesday, 12 August 2014


25 years is a long time and it’s no time at all.

25 years is made up of lots of times.

The time he smuggled me into a music festival after buying a wristband from a dodgy geezer, before realising he was left, alone, on the wrong side of the gate. The first time I felt lost and found in a kiss. The times I’ve looked across at him and felt luckier than everyone else in the room.

The time he went pale at the wedding rehearsal and I was convinced he was having second thoughts, until he confessed later that he’d been dying for a poo. The time our baby girl was born. The time they told us she had a frightening, cruel, disability.

The time he taught our boy to ride a bike. The times he’s held my hand in front of a silent ultrasound. The time our bed fell to pieces in a horrific mash-up of an adult film and a game of Giant Jenga.

The time we drank pina colada and got caught in the rain (just like in the song, apart from that we weren’t cheating bastards). The times I hang back when we walk down the street (generally not a good idea when I'm downwind of him after a curry), just to take in the sight of him walking hand in hand with one of our children. 

The times he's been funny, strong, patient, steadfast, silly, soppy, kind, and been here, always here.

And those times. Y'know. *winks*.

He is my constant. And, according to my calculations, today he’s been my constant for 25 years.

I’m talking, of course, about the milkman. No, not really. It’s the husband, and I never get him to dress up in a milkman’s uniform (although, come to think of it, there is something about that Pat Mustard fella in Father Ted...).

So here’s to my constant man. I will state here, for the record, I’m ready, willing and able to be constant for another quarter decade if he is. Of course there is an exclusion clause, of which he's fully aware: once he's incontinent, I’m off. Constancy will only take you so far...

Note: For anyone who isn't sure, the first photo is my husband, the second one is Pat Mustard. It's not some sort of Before And After 25 Years With Me gallery, honest.

So what was number one twenty five years ago? Well, apparently, Swing The Mood by Jive Bunny. If you think I’m picking that as the song for this blog entry you are insane. Instead, here's Boards Of Canada - Constants Are Changing.

Tuesday, 5 August 2014


So Glastonbury’s out, then. Latitude is not going to happen. It is the end of the road for plans to attend the End Of The Road festival. I’ll be folked if we can manage Cambridge. We are not going to be the family that shares when it comes to live music in a field. We’re not going to be the klaxon-voiced poshos wearing wellies, taking Jocasta and Sebastian for a kids’ Reiki massage in the family healing area on our way to have a bop to Mumford & Sons before retiring to our yurt. Thank God.

In case you’re wondering, we tried our first Kids In Tow Festival on Saturday. A friend of mine, Twang, was playing in a band at Rhythms Of The World, in Hitchin, a little town not far away from our little town. It seemed like a great, small scale, family-friendly event to try out with the kids and see if they would get the live music bug.

Food and snacks were planned in military style as usual. The picnic was consumed as soon as we got through the gates. We clocked where the majority of food stalls were so when we pitched our rug we weren’t too close to tempting smells. These are all Prader-Willi Syndrome requirements when in unfamiliar territory.

My daughter - whose PWS manifests in many ways, one being not liking loud noises - donned a pair of ear defenders as soon as we got within 40 feet of a stage. (You know what I mean by ear defenders - those headphone-like things like you see clamped to the heads of celebrity babies with fruit-based names when the camera zooms in on them at televised festivals. Just like that). We headed to the Arcadecletic Stage (easier to find than it was to pronounce) to see Twang’s band, Beau Jangles, a bluegrassy/folky duo. My girl sat and listened, fascinated to see Twang singing and playing guitar just in front of us “like a proper pop star, but not as good as One Direction”. Her brother, teaming up with Twang Junior and assorted mates, tipped back his hat, had a little listen, and got bored after three songs, only perking up when he learned how to shin up a tentpole. He never got over his initial disappointment that Twang didn’t enter the stage astride his motorbike. I don’t know why he thought this was going to happen. He’s not Meatloaf, for Steinman’s sake. 

“Well, I wonder who we’ll see next?” I said to Ear Defender Girl. “Oh, no-one,” she replied. “That was good, and now I don’t have to listen to any more bands because I’ve seen that one.”

So we picnicked, pottered about some stalls, had a smoothie (made, rather marvellously, in the back of an adapted fire engine), and generally avoided going anywhere too close to actual music, until I persuaded my boy to come to the main stage with the rest of the Mini Peaky Blinders to jump about a bit to the fiddle-fuelled sounds of the lively CC Smugglers.

We lasted about three hours, and headed home just as the rain started to fall. I would have loved to have stayed and heard a ton more live music, but the kids had reached their limit. My daughter pronounced it “good fun, Mummy, if there weren’t so many bands.” My son could only come up with “hairy butt face” as a comment, and no, I have no idea if this is good or bad.

So, Hitchin Rhythms Of The World, you fun, hairy butt face of a festival, we will be back. I’m just not entirely sure if we’ll bring the kids next time.

Video is Adam Buxton - Festival Song

Thank you so much to Twang, Jan, and Ben, for providing us with a parking slot, good company, football/pole-climbing/piggy-backing/instant friendship services.

Friday, 1 August 2014


I smell of chlorine. I could lie to you and tell you this is from a Hallmark Family Outing, but it isn’t. It’s from me, going to the pool, on my own, yes, bloody well on my own, five early mornings or late evenings a week, depending on my other half’s shift pattern, for 45 minutes of blissful peace. If anyone now mutters pissful peace, thinking of how many kids have weed in the water during the summer holidays, I will fight them, whilst wearing goggles. There’s your enduring image for the day. No, don’t thank me.

Unfortunately I’ve already had today’s quota of blissful minutes (unless the bloke is feeling frisky later, but let's face it, 45 minutes is a touch ambitious), so I’m sitting writing this with my kids’ National Squabble Championship Summer Holiday Training Regime in full flow behind me. I’m trying to fob them off with a George Of The Jungle DVD. It isn’t working. There are thirty two full days to go. Carol Vorderman and Rachel Riley can decamp, vacate and vamoose (6, 6, and 7 letters) because I’m the Countdown Queen. (In the sense of being very interested in counting down the days, that is, not in picking out vowels and consonants. Or being foxy).

But I’m being disingenuous (12 letters: Get in!). We’re nine days in, and all right, I'll admit, it has had a whole bunch of highlights.

First there was the Perfect Start (detailed in blog post Spacebats). Since then, we’ve been on treasure hunts, been presented with Explorer Certificates, picnicked like it was a national sport, visited water parks, ridden trikes and bikes, had more home movie nights than a minor film festival, seen friends and family, and been to the library twice (although my daughter’s annual anxieties about whether there’s enough time to complete the Summer Holiday Reading Challenge have been bubbling under and over). If this list sounds improbably impressive, please take into account that before, during, and after all of these activities, my daughter and her brother have been arguing and I have been shouting at them. It’s the rhythm of life, man.

Still, yesterday we done good. It was the return leg of the Prader-Willi Syndrome Best Friend Forever Quarter-Final.  We used our trump card: the free family ticket to a Farm & Adventure Centre, gained in our amazing Everything Bar The Fondue Set Generation Game-style raffle win (Karma). PWSBFF, my teenage daughter, and her pint-sized, pork pie-hatted brother squirted water from a real fire engine hose (yes, yes, they did, it wasn't just the Rude Boy whizzing in a cornfield, honest), cuddled rabbits, held hissing cockroaches, stroked snakes, tickled tree frogs, and got equally excited about the visit to Sainsbury’s on the way home to choose their tea. Within reason, and calorific allowances, obviously. What do you take me for?

The day was completed by an evening session of Miranda’s Maracattack fitness DVD, which PWSBFF threw herself into with wild abandon, despite my girl ducking out of it it after the warm up, followed by a showing of Horrid Henry The Movie, some girly bedroom chats, and a surprisingly long sleep. This morning we walked to the sweet shop to buy some no-sugar sweet treats, and headed to a local watering hole for Virgin Marys and diet pepsi. Although I was sorely, sorely tempted to ditch my maidenhood and vodka my Mary right up.

They had fun. You can tell, can’t you?

Song is Floyd Newman - Frog Stomp. No frogs were stomped today or during the making of this video, I hasten to add. This is worth checking out for the sublime dancing, by the way.