Climb

My daughter manages well on the flat.

She’s a bit splay-footed, and has a frankly duck-like gait, and walking tires her out, but on a level surface she ambles along quite happily with others.


Introduce a slope, or a step, and she slows right down. It’s all I can do to stop my three-year-old boy sprinting up the steps to a slide, while my teenage girl has to tackle them at extremely low speeds and with extreme caution, her hypotonia (poor muscle tone) exerting its insidious influence.

But she’s determined.

I found these photos the other day. They were taken in Chamonix, France, on a summer holiday we took with friends in 2007.

We spent the morning at a climbing wall. Not a fake one, but a real rock face, on a sunny day, surrounded by stunning mountain scenery.

And the kids were scaling the cliff. The older ones in particular were like mountain goats, grabbing footholds and toeholds and nipping up there like lizard-worshipping Tom Cruise on steroids.

My girl had had a little go the previous year, and only managed to get up as high as we could reach to support her.

She looked at her peers and their older siblings and got this look on her face. It’s the kind of look a sprinter gets in the blocks, or a weightlifter gets as he’s rubbing powder onto his hands.

Then she stepped forward, took the climbing instructor’s hand. (He was a rather fit fellow who had already reduced the adult females in our party to jelly).

And she started to climb. Slowly, painstakingly, she climbed. With a helping hand here and some guidance there, she scaled the rock wall all the way to a ledge about three quarters of the way up - just as far as most of the other kids her age.

And what I remember most was my mate’s little girl (who had been brought up knowing all about my daughter's problems and challenges in life) turning round and shouting excitedly to the rest of the party: “LOOK! LOOK WHERE SHE IS!”

All the kids came running and gazed up at my little girl, awestruck at what they all realised was a superhuman effort.

She grinned back down at them, her chest puffed out with pride, and the instructor beaming beside her.

Mind you, he wouldn’t have been smiling if he had realised how long it would take to get her down.

Song is Mercury Rev - Climbing Rose

Important

It just doesn’t make sense.

The most vulnerable members of our society are being targeted. While the richest remain bullet-proof.

280,000 disabled people will have their benefits cut from April 1. 

New tests by doctors and independent assessors will have to be carried out at regular intervals. The cost of this? £675 million. 

You can read more in an effective piece of invective from The Guardian’s Polly Toynbee.

And this impassioned plea from a disabled man who says the changes will strip him of his last shred of dignity.

But what I’d really like you to do is take a minute out of your day to sign this e-petition.

Just click here to sign your name.

Thank you. Please use the buttons at the foot of this article to pass this message on to as many people as you can. It's important.

Video is a performance of John Cage's 4'33"". 

Nothing

I’d like to announce that this morning, from 9.30am, I will be doing absolutely nothing.

This ‘nothing’ may involve having a cup of tea, but that's it.

Well, it could also include the small amount of effort involved in putting a record on, but that is bloody well it. I’m not getting back onto my feet to turn it over.

For it is a momentous day. I will be dropping off my daughter at the doors of her special school, as usual, once the usual morning routines have been performed.

But today, instead of heading to the park with my son, the little fella will be herded round the corner and into a building that will become his regular morning hangout: nursery.

Yes, I have lots of things that I should be doing: a freelance writing job, learning a speech I’ve got to deliver, phone calls, paperwork, picking up prescriptions, ringing builders, sorting out the washing, food shopping, cooking tea and Lots. Of. Other. Stuff.

But do you know what? They are going to have to wait. This morning, for a couple of hours, I’m going to put my feet up and do bugger all. 

Please.

Do Not Disturb.

*switches brain to standby*

Video is Elastic - Waking Up

Picture

I love this picture. I absolutely love it.

It's a group photo from a chaotic, funny, fabulous, family holiday spent with my parents and my two brothers and our children in a ramshackle old Norfolk farmhouse in 2005.

I love it because of its imperfections, not despite them.

I love the way most people aren’t looking at the camera. I love my niece Kate having a tantrum, and Aunty Angela trying to talk her down, while her dad tells her to get a grip, and her big sister Jess looks on in disdain. I love my Mum and me (far left) looking like little chubby peas in a pod. I love my Dad on the other end, completely oblivious to the mayhem going on behind him.

And I really love the sight of my girl, wriggling out of my grasp, because she didn’t want to line up. All she wanted to do was go and find some more peacock feathers to add to the few she's already collected and is clutching tightly.

The reason I love that so much is because she’s in the thick of it. Getting fed up of posing. Doing normal kid stuff.

When she was diagnosed with Prader-Willi Syndrome, I never dreamed this would be achieveable. I thought the issues with food would make extended big family gatherings impossible.

But we all spent a week living, snacking and eating together. And watched in amazement as our hungry little girl insisted on waiting way past her normal tea-time in order to eat with her cousins. 

It was such good fun, we did it again the next year. But because we’ve now got a bigger clan, different jobs, and most of the kids are now teenagers and twenty-somethings, logistics mean we probably won’t all go on holiday together again.

Maybe that’s the real reason why I love this picture so much. 

To everyone else, it might just look like a bit of a rubbish line-up. An out-take, even. For me, it bottles a bit of the magic from a magical time that's now out of reach.

Video is McFly - All About You (one of my daughter's favourites from this year.)

Perfect

Some of my daughter's favourite books are Francesca Simon's Horrid Henry stories.

If you're not familiar with them, they can be summed up quite simply: they centre around an extremely naughty schoolboy, who is called Henry, and can be very horrid. You could probably have guessed that for yourself.

My daughter, unlike most children, is fascinated by a secondary character. Unlike the vast majority of readers, who dream vicariously of being like the eponymous anti-hero, playing tricks on teachers and getting up to all sorts of mischief, my little girl worships Henry's brother, Perfect Peter. He's a nauseously polite, irritatingly pleasant, Aryan Youth-style, sanctimonious, little sod.

But in my daughter's eyes he's the real hero. I write here sometimes about my girl's rebellious, stubborn streak (see the last entry, Scratch). But it doesn't surface very often. Most of the time she is incredibly well-behaved and delights in doing her homework, getting tokens for good behaviour at school and seeing rows of happy faces added to her reward chart at home.

Her little brother, on the other hand, is rapidly growing up to have - how can I put it? A problem with authority.

The other morning, he was running round the house, yelling, having already been told off for trampolining on the sofa, throwing a DVD like a frisbee, and calling me a 'pooey bum'. (This last one strikes me as not only rude, but hypocritical, seeing as he's only recently potty-trained and still drops the odd log in his pants).

My daughter watched all these shenanigans quietly, looking up from her Horrid Henry book every now and again, with a world-weary expression on her face. And in one of those surprisingly brilliant bursts of vocabulary she sometimes displays, said the following:

"This family, Mum," she said looking around at us all. "And this family," she added, nodding down at her book.  "There are a LOT of similarities."

Video is Feargal Sharkey - My Perfect Cousin

Scratch

Shower time for my daughter ended in tears in the other night. Mainly from her, but some from me, too.

The household was lightly frazzled by evening, anyway, after some Olympic niggling between the kids.

My patience was gossamer thin by the time I tried to get my girl into the shower cubicle, to set about washing her hair.

But she wouldn't step in. And she wouldn't stop scratching.

People with Prader-Willi Syndrome can have a tendency to skin pick. I'm not just talking about the urge you have to pick at a scab once or twice before you force yourself to leave it alone. I mean doing it repeatedly, enough to cause infection and even scarring.

With my daughter, it manifests itself in the form of scratching. She often ends up with a sore-looking neck or arm after sitting and repeatedly scratching an itch. We put E45 cream in her back at night to ease her urge to scratch along the length of her spinal fusion scar (or at least the bits she can reach).

On this occasion, it was defiant. I told her to get in the shower and stop scratching her tummy, which had lots of red marks on it. But for some reason, this turned out to be one of those rare occasions when my daughter decides out of the blue to be rebellious. She looked me straight in the eyes, planted both hands on her stomach, and started scratching even more furiously, her skin turning an angry red.

I tried to grab her hands but she increased the speed, her nails digging in and even causing a couple of pin- prick-sized spots of blood to appear.

There followed a short battle, where I had to resort to the underhand tactic of bundling her in the shower cubicle and deliberately aiming the nozzle so the water flowed over her face and into her eyes (which she hates).

It broke the spell. The scratching frenzy finished.

She was struck with the guilt that always hits her after a display of odd behaviour. Floods of tears ensued.

A cuddle on the sofa , a light hot chocolate, numerous sorrys from her for ignoring me and several sorrys from me for shouting, and it was all over, as quickly as it had begun.

Video is Morphine - Scratch

List

I stumbled across this list yesterday*. It was created by a young man with Prader-Willi Syndrome who had a New Year’s Wish ‘for people to know what it feels like to have PWS’.

When asked how he could get his wish, he said: “People could do some of the things that I feel every day, just for one day and maybe they would understand.”

It's a real eye-opener.

Here’s his list. If you like - and in the spirit of New Year's Resolutions -  you could pick one or two of the challenges to undertake. Just for a day. See how you cope. And then think about living your life like this. Every day.

1. In the summer, turn up the heat and wear extra clothing or in the winter, wear very little clothing and turn the heat down.

2. Only eat ½ of your meal, breakfast , lunch or dinner and leave the table hungry.

3. Go to an office or school party with all the extra food and goodies before eating lunch and DO NOT EAT ANYTHING! 

4. Put cookies, cupcakes, or other goodies that you like on the counter and be sure to walk by them every time you go in the room but you can NOT eat any!

5. When you are really hungry watch someone else eat something that you LOVE, knowing you cannot have it.

6. Do something out of the ordinary or different in public and look around to see someone stare, laugh or tease you because you are different. 

7. Lock your cabinets or refrigerators and give someone else the key. Tell them to only let you eat when it is meal time or time for a snack. DO NOT eat in between meals. 

8. Restrict your calories to only 1100 calories per day including all meals and snacks. Count all calories including drinks. ONLY eat 1100 calories!

9. Drink only sugar free, diet drinks or water do not drink liquids that contain calories.

10. Never go into the kitchen, pantry or cabinets unsupervised. Only enter the kitchen or dining room if someone else is with you and can be watching what you are doing.

Video is Eels - Guest List

*The list came from an entry by Janis Tull Williams on the Prader-Willi Problem Solving And Solutions Exchange page on Facebook