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

Change

We need to talk about change.

I don't mean the kind of loose change you find down the back of the sofa, although now that I've mentioned it, I reckon there's enough down there to buy a cheap bottle of rosé with...

No, I'm referring to the unexpected changes that happen in day-to-day life. Changes that are usually only a minor irritation to most people but which can be Very Alarming Indeed to my daughter.

It's physical, I swear. The panic starts in her belly and rises, in what I can vicariously feel is a skin-tightening, cheek-blushing, scalp-tingling, jangle of adrenalin. Sometimes I can talk her down, sometimes I really, really can’t (see previous blog entry: Meltdown).

People with Prader-Willi Syndrome find dealing with unexpected changes very difficult. Anyone with a PWS child will tell you that structured days where things run to plan are easy peasy lemon squeezy. When the running order is switched, and stuff happens to cause you to deviate from the advertised programme, days become eyeball-poppingly stressful.

Let me give you an example: coming back from our holiday on the Isle of Wight, we were booked onto the 11.30am ferry, but we were a little bit early, so a nice Wightlink fellow told us to drive the car into Lane 1. He smiled, unaware of the horror he would potentially unleash with his next sentence: “There’s a chance we can get you on the 11 o’clock one.”

First of all, it was a change. An unexpected change. I knew what was going through my daughter’s mind: “But HOW? WHY? We’ve got a ticket for the 11.30am ferry, so that’s the ferry we’re going on! How could be catch the 11am one, when our ticket DOESN’T SAY SO!” The high changiness factor was exacerbated by the vagueness of his phrasing - “there’s a chance” means “might or might not”, and this, to a PWS person, is an enormously unsettling concept.

My girl began to panic. Her voice started rising, questions began to pour out, and her emotions threatened to break free. Luckily, we managed to lasso her concern and tether it with a bit of nifty explaining and distraction, in particular the trump card of pointing out that it was time for her morning snack.

Well now, we’re planning to change the way we deal with change. There was a talk about behaviour at the International Prader-Willi Syndrome Organisation Conference last month, where the idea of ‘change cards’ were explained.

The concept is simple. You get busy with your Pritt Stick, sticky-backed plastic, felt tips, computer printer, or whatever, and make some little cards, decorated with your child’s favourite TV or cartoon character. You include the word CHANGE. And you keep them about your person, obviously being prepared to soak up the embarrassment of accidentally trying to claim nectar points at the garage with a pink Hello Kitty CHANGE card.

When an unexpected change happens, you acknowledge it, you say to your PWS person that there has been a change that no-one knew would happen, and you give them a card. Here’s the clever bit: you’ve previously agreed with your child that if they get three (or four or five or whatever number you choose) change cards in a week, then they get a reward (such as extra ‘choose time’ at school, a magazine, or a pack of collectable wotsits in their latest endless collection of oojamaflips). So a change is still alarming, unsettling, upsetting, balance-bothering. But it has an upside. The presentation of a CHANGE card is actually a good thing coming out of a bad thing.

Now where are my scissors?

Video is David Bowie - Changes. 

Panic

My daughter’s face was stricken.

I could see the panic starting in her toes and rising up through her body. I needed to stop it before it reached her head, at which time there would be NO REASONING WITH HER.

“It’s OK, we can sort it out. It’s not a problem. Everything will be fine. Don’t worry. Listen to what I’m saying: it’s all fine. It’s all right,” I insisted, trying to keep my voice firm, and get her to actually listen to what I was saying.

So what had happened to put her in a tailspin?

The Asda delivery truck had been. We were on a tight timescale to have Sunday roast ready in time, and they’d missed one vital item from our order: the chicken.

You need to understand how DISASTROUS this is. It’s why I don’t often order groceries online. Meals have to be precision-planned and to happen at set times in our household - it’s part of the regime needed to keep our hungry daughter happy and calm. There is no margin for error.

“Listen, listen. I ordered chicken breasts too, and they've brought them, so we can have those instead of the roast chicken,” I told my worried girl.

I had to repeat this four or five times before she accepted it. But she wasn’t happy. The menu and method had changed. Food that had been promised had not been delivered. 

And so, despite tucking in to a good, hearty meal, with breast fillets instead of roast chicken, (but piled up, as usual, with plenty of veg), we had the full scale “I’m so hungry!” routine in the evening. It doesn’t happen too often. But the minor mishap had lodged in her brain and food was all she could think of.

So, I’d just like to send a message to the very polite and friendly delivery driver, who whistled a jaunty little tune as he sauntered back to his lorry.

You’re an utter b**stard.

Video is Alan Partridge - Knowing Me, Knowing Yule clip. It's not actually a chicken, but it's how I felt.

Video is The Smiths - Panic