Friday 25 July 2014

Spacebats

I’m not saying I’ve won the summer holidays, but, well, I am, I am saying I’ve won the summer holidays. On the first day. 

Admittedly, I may be crowing a little early. After all, there are 40 days to go. Yes, I may possibly be counting.

So just how did I come to be temporarily wearing the Tour De Vacances’s Maillot Jaune?
It’s simple: it was down to a giant metal man, a teenage girl with an infectious giggle, and a woman who is making a sacrifice beyond comprehension.

The 16ft tall silver fellow was the star of a brilliant outdoor theatre show I took the kids to today: Graeae Theatre’s adaptation of Ted Hughes’ ‘The Iron Man’. We sat on our picnic rugs in the glorious sunshine in a lakeside park, and watched as with the aid of pedals, pulleys, wheelchair power, and imagination, the clanking, charming giant was brought to life.

[Graeae Theatre is an amazing company, by the way. Their aim is to provide a platform for the talents of deaf and disabled actors and musicians (which they did to brilliant effect with the London Paralympics opening ceremony, which was co-produced by Graeae’s artistic director and included a riotous and rousing version of Ian Dury’s Spasticus Autisticus from their theatre show Reasons To Be Cheerful). Graeae take their productions out into communities and perform great spectacles that just happen to make the idea of a lad in a wheelchair operating a giant robot, and a deaf chap getting a crowd to learn the sign for ‘Spacebat’, normal, entrancing, and fun. As a consequence of today’s entertainment, if just one of the kids watching in pyromaniac awe when some Real Fire was used in the production thinks twice in the future about patronising, teasing, or ignoring someone with a disability, then Graeae's work here was worth it. (Yes, of course, my boy was one of the pocket-sized flame-worshippers, and no, League Of Gentlemen fans, Graeae are absolutely NOTHING like Legs Akimbo)].

The teenage girl was my daughter’s PWSBFF (Prader-Willi Syndrome Best Friend Forever - come on, you should know this by now). I did what I usually do when they get together: watch them watching. There’s something amazing about these two teenagers; these unique, rare, unusual, idiosyncratic, original, out of the ordinary girls. Who despite being unique, rare, unusual, idiosyncratic, original, and out of the ordinary - or perhaps because of it - are like peas in pod. An odd pod. But our pod. 

“And what about the woman making the sacrifice?”, I hear you ask, or perhaps I don’t, because I mentioned that ages ago before I Led Zepped this post and rambled on.

Well, that’s PWSBFF’s mum, who took both girls home for a sleepover, and, more importantly, is taking them to see the film Pudsey tomorrow morning. You know, the one starring the dancing dog that won Britain’s Got Talent (no, me neither). All I know about it is that it is supposed to be truly, monumentally, mind-bogglingly awful. 

And I DON’T HAVE TO GO.

Like I said, I've won. Well, peaked, at least. 

______


Click on link for today's song: The Primevals - Hit The Peaks

Graeae's The Iron Man production is part of the International Festival Milton Keynes, which continues until Sunday. There are two more free performances on Friday July 25.

Graeae is a dangerous name, you know. Try and write it down: you'll be lost in A & E before you know it. Thangyouverymuch, try the veal, I'm here all week.

Saturday 12 July 2014

Ride

We’ve just returned from a week’s holiday in Devon, whacked, shattered, sun-burnt and wind-buffed.

I’ve hopped in a sack and bombed down a tube slide, looking for all the world like the Very Hungry Caterpillar before he changed into a beautiful butterfly (I’m waiting....still waiting...for the wondrous transformation to take place). 

I’ve done something similar on a water slide, only there was just a mat to sit on and no sack to spare my blushes as the G force tested the limits of my straining cozzie.

We’ve clambered through castle dungeons, snoozed on the beach, done the Sid & Lizzie Wibble Wobble dance, and stuck each day to the Plan To Help My Daughter Cope With 
Enormous Changes To Everyday Routines. 

The PTHMDCWECTER has a few simple elements which we find pertinent for Prader-Willi Syndrome:

1) Food: Where, when and what. Get yourself organised, have your snacks available, know your lolly calories, and be familiar with the menu of where you’re eating before you eat there. This may involve an internet menu hunt or an early morning perusal of menu boards.

2) Projects. Holiday days need structure, precisely because the normal structure of a day has been dismantled. Have a morning activity planned (swimming, Star Landers troupers Super Hero Movie Trailer Making Session), line up an afternoon event (a visit to The Big Sheep theme park, beach trip, tourist shops tat run), and grit your teeth and prepare to be dragged to the dance floor for some serious evening Macaren-agadoo-perman action at the park troupers' party disco time (led by a giant DJ seagull and a lizard in a pink dress).

3) Freak Awareness: Do not be freaked out by the sight of a giant DJ seagull and a lizard in a pink dress.

4) Get The Sand Out Of Your Ears: If you think the kids are raising their arms in the air and yelling "Sieg Heil! Sieg Heil!", you are mistaken. They are shouting "Seagulls! Seagulls!". God, at least I hope I'm right.

5) Have A Goal (and some ice and lemon): Get the kids into bed, and open the gin.

I’m proud of my daughter. As usual, she showed up her brother with her travelling skills, watching DVDs and emitting a sanctimonious glow like an angel that had OD’d on Ready Brek as he kicked off next to her. I swear I saw her smile smugly when I finally lost the plot and yelled at the Patience Free Sibling Zone to “BE QUIET, JUST FOR FIVE MINUTES! THAT’S ALL I ASK!”. Even he suffered a rare attack of self awareness: “Mummy, if I grow up and have a baby, then I’m never ever not even going to ever let them talk AT ALL.”  

She scrubbed up right nice for the children’s entertainment (oblivious to the fact that she was five years older than any of the other kids taking part). She swayed and hopped and took part in the dance routines. She even managed to put a lid on the vexing question that was bothering her all week, which was whether Sid and Lizzie (the seagull and lizard) were people in costumes. “I know seagulls can’t talk, but I just cannot see a zip, Mum, so I don’t think he’s real, but HE MIGHT BE REAL!” And touchingly, my too-cool-for-school boy, his new pork-pie holiday hat tipped back nonchalantly on his head, gave her brotherly support and stood by her side every night, joining in with the Chi Chi Wah song (although he later admitted to me he liked it because the actions involved "sticking your butt out").

So we’re back home. They’re watching The Goonies. I’m eyeing the gin, which has Evening Project written all over it. 

It’s been a ride. 


Video is Feist - Cicadas And Gulls