Cone

It was going really well.

My daughter’s 15 inch scar on her back from where she had her spinal surgery just a few weeks ago had healed up nicely.

That was until the other night, when I went out to play rounders (I’ll tell you another time about how cathartic smacking the hell out of a ball with a wooden bat is). My husband was on nights, so my mum had agreed to babysit for a couple of hours.

I asked the usual getting in through the front door question: “Were the kids good for you?”

She gave me a look. “Well, they were, but we’ve had a bit of an incident.”

The i-word is not usually a welcome one, and it proved true to form. My daughter had picked her scar. She’d got blood all over her nightie, all over the bedsheets, and had opened up some of the healed up areas of skin.

Mum handed me a small piece of wiry material. “She says its her stitch.” I examined the offending article. “Yep, that’s a stitch all right.”

A helpful voice piped up from my boy's bedroom. "Most importantly, Mum, she's picked the bottom part where it took longest to get better, Mum. Most importantly, you know. Most importantly." God, he loves it when she's in trouble.

I cleaned and patched up my girl and then had a bit of a rant at her. I felt bad afterwards - a tendency to skin-pick is a common problem with Prader-Willi Syndrome, and later I thought about that urge, and how itchy and tempting a big healing scar must be.

We booked in with the nurse at the GP’s surgery (who just signed her off the week before), and we’re back putting dressings on for a few days. 

I’ve cut my girl’s nails short. 

A friend has offered me two ‘cone of shame’ protective dog collars to put round my daughter’s hands. I almost considered accepting.

Song is Wilson Pickett - Ninety-Nine And A Half (Won't Do)

Urge

My daughter is now a whistle-free zone.

You may recall that she has had a Roger Whittaker Simulator strung round her neck for years. (See previous post Whistle).

People with Prader-Willi Syndrome can be prone to skin-picking, but in my little girl's case, fiddling with and feeling the string and the metal clasp of the whistle with her fingers seemed to negate the urge to pick.

But her teacher recently suggested to her that she might be able to get on with her schoolwork much faster if she put the whistle away for a while. And because this appealed to my girl's desire to 'keep up' and achieve tasks she's been set, she tried it. A short while later, she decided herself that she didn't need the whistle at break times or lunchtime, either. And now she's ditched the thing at home, too.

I wondered if self-imposed cold turkey might have some side-effects, and it has. The whistle-fiddling has been replaced by a nervous tap, tap tapping of her forefinger on her teeth, followed by three strokes of her finger on her tongue. The number of taps vary, but it's always three touches on the tongue.

Interestingly, she seems to be aware of this new habit, and is trying to talk herself out of it. I mean this literally: she's having regular loud and intense debates, answering back in a two-way conversation with herself, about how she needs to stop the tapping because 'big girls' don't do that.

So I'm waiting to see what'll happen if she does manage to persuade herself to stop.

Because if she does squash the urge, I've got a feeling it'll pop up somewhere else.

Song is Syl Johnson - I Feel An Urge

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

Whistle

It’s a tiny, pleasant little sound. A gentle ‘tinkle’. It’s the noise the pea makes inside a whistle. Not when it’s being blown, but when it’s being jiggled about.

My daughter ALWAYS has a whistle. (And, just to be safe, I always have a spare one in my handbag).

It serves a very useful purpose: it keeps her hands busy. Without something to fiddle with, she’d be displaying some of the traits she shares with some other people with Prader-Willi Syndrome - obsessive compulsive type behaviour like rubbing her gums, picking her nose, sticking her fingers in her ears, or picking any insect bite or tiny cut in the skin.

So instead, she fiddles. Everyone who knows her is used to her tinkle. You can hear her coming, like a cat with a collar on its bell.

Once, my daughter and her well-known whistle even saved the day at a kids’ football match. We’ve gone to watch my friend’s sons play at the local ground on a Saturday morning, and rolled up a few minutes late, wondering why the game hadn’t already started.

There, looking stressed out, was my mate’s husband, Fraser. Who was about to abandon the game before it had begun because although they had a ref, they had no referee’s whistle.

I believe he was actually in the middle of the phrase: “Where on earth are we going to get a....” when he broke into a huge grin as he spotted my girl ambling across the field towards him, absent-mindedly fiddling, as usual, with the whistle that was slung around her neck.

Video is The Beatles - Two Of Us (It was either going to be John Lennon or Roger Whittaker whistling. Lennon won).