Showing posts with label Mercury Rev. Show all posts
Showing posts with label Mercury Rev. Show all posts

Sunday, 9 October 2016

Potholes

I’m popping into school tomorrow to have a chat with my daughter’s teacher.

After a few week’s of ‘Good day!’ comments in her home/school diary, I got a missive on Friday saying my girl had been ‘difficult and challenging’.

‘Rude to staff, lots of refusing to do things, couldn’t get to the bottom of the difficulties,’ the message read.

That last bit says it all. Because with my girl, you never quite know what’s going on beneath the surface, and finding out the cause of anxiety and difficult behaviour isn’t always easy. Granted, if you burn the dinner, or forget to buy that low-fat ice cream you promised her, it’s pretty obvious. But a lot of time it’s something worrying her that gets suppressed, and when it manifests it’s not always clear where it’s coming from.

Was last weekend’s trip away with her friend a little daunting for her? Is it the upcoming school residential trip causing her to fret? Is it her ongoing anxiety over whether to choose size 3 or size 4 wellies when working on the school farm? Is it her mood disorder stepping up a gear again? Or is she just knackered?

A bit of detective work is in order.

It’s hard to picture, the ‘difficult and challenging’ side, isn’t it? I tend to post positively here, because there’s a heck of a lot of positive things to post. (Look, I’ll even bung you in a picture of her and Prader-Willi Syndrome Best Friend Forever sharing a cheeky champagne and lemonade spritzer at their traditional birthday sleepover on Saturday).

But the PWS road we’re on does have bastarding bumps and potholes along the way. Lets hope me and Mrs D can smooth the path a little tomorrow. And let’s hope it doesn’t take a steamroller and a lorryload of tar.

Song is Mercury Rev - Holes

Sunday, 15 January 2012

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