Sheena

My daughter used to have a teaching assistant called Sheena.

Apparently, when she was at school, a certain Ramones’ song  was the bane of Sheena's life.

Fast forward 20 something years. Sheena the teaching assistant quite rightly thinks that the children in her class would not associate her name with a song from 1977.

Mwah, hah, hah. Not in our house, my dear. 

I have never seen my daughter quite so excited and so energetic before or since we played her this and pointed out it must be about her Sheena. The idea that Sheena had her own ‘shouty’ song appealed to something in my girl’s very core.

When my daughter was diagnosed with Prader-Willi Syndrome, when she was too weak as a baby to lift her head, and when I thought she'd never gain the strength to walk, I was I could have known that one day she would be pogoing like Zebedee after a double espresso.

Admittedly, after this danceathon she was so tired she had a two and a half hour catatonic nap and was pretty much wiped out for the next day, too.

But for a couple of minutes here, my daughter wasn't disabled. She wasn't different. She was an over-excited little girl, like any other, having about as much fun as it is possible for a little girl to have.

Hey, ho, let's go.

Wheels

It was a backwards Zimmer frame on wheels.

It was latest in a series of contraptions to help my daughter achieve physical feats other children managed with ease (see previous blog entry Cricket).

Called a 'rollator', which sounded like something you'd cut your lawn with, it was actually an open-fronted frame which provided enough support to enable my three-and-a-half-year-old daughter to walk.

What it also did was act as a big fat flag to anyone who saw her, teetering along painfully slowly, that this child had something wrong with them. It also marked her out to the other children in her playgroup as different.

So, we decided to add something else to the equation. We would make it an object of envy, not pity.  A trip to Halfords, and a few minutes work with a screwdriver and the frame had some custom additions: a drinks holder and flask, a shiny new bike bell, and last but not least, some furry dice.

Yes, we pimped her ride.                          

                                                   

"Well, I'm not braggin' babe, so don't put me down

But I've got the fastest set of wheels in town

When something comes up to me he don't even try

'Cause if I had a set of wings, man I know she could fly"

- The Beach Boys - Little Deuce Coupe

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).

Fractions

I have a confession to make. I don’t want my daughter to understand fractions.

I wish her to remain blissfully ignorant of how to split a shape up into five equal parts. I do not want her to understand why two thirds is greater than three fifths.

This is selfish, and purely to prevent a terrible confrontation.

You see, when your child has Prader-Willi Syndrome, a condition which means they are constantly hungry but have to eat a restricted diet, you quickly learn some psychological tricks which may convince them they are somehow being ‘allowed’ more food.

By having a small dinner plate, which is filled up right to the edge with food, rather than the same amount looking somehow more meagre in the middle of a larger plate.

By keeping an empty raisin box, and tipping half of the contents of another box of raisins into it. So your child can have a ‘second’ box of raisins, but is actually only having one box, split into two.

And, last but not least, by telling porkies about fractions. “Yes, sweetheart. I’ve cut it in half, so there’s twice as much now”.

She’s going to kill me when she finally works it out.


Video below is Mr Duey - Fractions. I can only apologise.

Oestrogen

It was just one little sentence. One, short phrase uttered by my daughter yesterday as she chatted, shyly, in a hospital consulting room.

We were seeing her endocrinologist* (*hormone-wizard, as I call her. This may, or may not be a precise medical definition). Her paediatric consultant was also there, plus a nurse. All of them have seen my daughter on numerous occasions, so she feels quite at ease talking to them.

We were discussing puberty and menstruation. As you do. Most girls with Prader-Willi Syndrome do have some signs of puberty, but do not have their periods, or if they do, they’re scanty, and irregular, and may not occur until they’re in their 20s.

Although this doesn’t sound like a terribly bad thing, it is. It means the body isn’t producing enough oestrogen, which is very good for bone density and protecting against things like osteoperosis. So at some point in the next few years, she may have to have her oestrogen levels artificially increased.

Of course this deficiency in sex hormones means something else. Something I’ve been open with my daughter about, mentioning it if it naturally comes up in conversation, so it’s not a big secret or surprise for her.

And this is what she referred to, in front of all these medical professionals, as we talked about her menstruating in the future. It made me desperately sad and desperately proud.

“Well, I can’t have a baby, but I might have a period. That’s quite grown-up, anyway.”

Video is Bandit Queen - Oestrogen.

Hips

Today's blog is a special guest post by Katy G:

When my daughter was born she had a hip problem. When we received her diagnosis and year-long treatment plan we were knocked for six. The ancient, grim-faced doctor gleefully called the traction cot in which she was interred for a month 'The Gallows'. I read an article in some shit magazine at the dentists with the headline: 'Doctors Hung My Baby Upside Down to Fix Her'. I read awful stuff on the web about the sores and stench that would result from her nipples to ankles plaster cast. If I had found your blog I would have been in heaven! My husband and I too joked about having T-shirts made for her (see blog entry Gillian). Ours were going to say: 'My Dad Chucked me Down the Stairs' or: 'I Fell Off My Motorbike' because we got fed up of the whispering in the supermarket, and the: "Oh, the poor little thing!"s.

The rays of sunshine were few and far between, but I remember each and every one vividly. The man who glanced at us in the bank queue, did the classic shocked double-take, but instead of following up with sympathy, stuck his tongue out her. The amazingly camp bloke working in the clothes shop who threw his hands up on clocking us and squealed "Ooooh! Look at you! Doing a star jump!"

After a week of my daughter in traction in hospital in her special cot (flat on her back, legs in the air, held up with ropes, never let out, or allowed to change position) we were allowed to bring her home, with the cot so she could carry on her traction in the middle of our sitting room. We slept next to her, on the floor, with a stout pair of scissors to hand in case she choked and we had to cut her free. So that was relaxing. Anyway, one day we had friends round, and it seemed rude to exclude her, so we sat on the floor around the contraption containing the perfectly cheerful strung-up-baby, drinking and chatting happily. A man knocked on the door collecting for charity. I was slightly jolly, with a beer in hand, and asked him in, while I found some cash. I didn't expect him to follow me into the sitting room. When he walked through the door he saw a bunch of youngish adults clutching cans of Stella, sitting laughing in a circle around a baby tied up in a weird, metal frame. He looked utterly shaken and appalled. I still can't think of that without giggling. And feeling slightly guilty for ruining his day.

Video is The Swinging Blue Jeans - The Hippy Hippy Shake

You can follow Katy on Twitter at @ksg123, or on the Word Magazine blog (username: katyg). Or on the Westmount Music blog.

First

My daughter spent an amazingly exciting week away at camp, sleeping in a tent, going to Thorpe Park, swimming, having campfire sing-songs, and even caving. So what was her answer when I asked her what the “best bit” of her trip was?

“Spag bol. We had spag bol, Mum.”

Similarly, when she went to a pop concert at Wembley Arena with the Guides, and saw JLS and a host of other young chart-botherers, what was the highlight for her, when quizzed? 
“That chicken pasta meal you packed for me, Mum.”

Our recent holiday on The Isle Of Wight? 

“The sea food platter”.

Can you see a pattern emerging here?

Today, we were round my Mum and Dad's. My husband was working, so didn't know anything about a little gift 'Nanna' had given my daughter: a signed photo of young Arsenal and England star Jack Wilshere, sorted out for my little Gooner by a friend of a friend.  (By the way, my husband, despite being a Spurs fan, manages manfully to curtail his instinctive hatred of the Arsenal when it comes to my daughter's love for them.)

When he arrived back home and settled down for a catch-up chat with his favourite girl, and asked her if anything good had happened today, her face lit up like a beacon. "Ah, bless," I thought to myself. "She's so excited about that picture, she can't wait to tell her Dad!"

Grinning from ear to ear, she looked up at him, her eyes shining.

"We had a LOVELY lasagne."

Now I enjoy a meal as much as the next chubster. But for people with Prader-Willi Syndrome, food is such an all-encompassing force in their lives that it really is their first, their last, their everything.

(Cue Barry:)