Club

It’s nice to belong.

My daughter used to go to Guides, and loved it: the songs and promises, the rituals and rules, the church parades and camps, and the whole Hitler Youthy uniform thing.

After we moved house, she couldn’t go to her old group where many of the girls had known her since nursery and primary school. She joined the troop in our new town, but 

was a bit shy, complained of being tired by the time it finished, and made a decision not to go any more.

We’ve been trying to think of an earlier activity that could replace it, and give her a bit of social interaction and stimulation out of school hours. And, by George, I think we’ve got it! 

Today, she started After School Club. It’s two hours on a Monday, where the minibus picks her up from her satellite class at mainstream school and trundles her up to the special school secondary site.  

Her younger friend Bethany was there (I’d checked her days with her mum and deliberately synchronised my girl’s attendance).

They had a great time. Most of it, I gather, spent cutting out and sticking every item from the four pages of Hello Kitty branded goods in the Argos catalogue, which they have decided they are going to present as a shopping list to the headteacher, entitled: ‘Toys we need for After School Club.’ Good luck with that, girls.

How do I know it was a proper success, though?

My daughter, the one with Prader-Willi Syndrome, the one who never physically feels full up and who has her tea at 5pm on the dot, announced pointedly to me when I picked her up at 5.30pm: “I really don’t mind having a late tea, mum.”

Fulsome praise, I can assure you, doesn't come any fulsomer.

Song is Ray Charles - At The Club

Related posts:

Friend

Friend (update)

Camp

Solar

I remember sun-kissed holidays from my youth.

Running in and out of the sea wedged in a blow-up dolphin rubber ring, going wrinkly from spending hours in the camp swimming pool, catching crabs at Wells. And that was just on one Club 18-30 holiday.*  (*joking Mum, for God’s sake, I’m joking).

Our holidays were special; it’s not just the rose-tinted specs of hindsight filtering them pink. I just remember having mountains of fun, with Mum making amazing cars and boats out of sand for us to play in, and Dad being the biggest kid of all, horsing around on the beach, always, always playing games with us.

We returned last week from a special holiday of our own. It was our turn to be the responsible grown-ups. We took our two kids to the Isle of Wight for a week, to a cheapo Haven Holiday-alike family resort, and thanks to the magical ingredient of constant sunshine, and the marvellous horsing-around skills of my husband, I’m hoping we’ve managed to brew up some potent solar-powered memories for our children.

When you go on holiday with a child with Prader-Willi Syndrome, there’s an extra level of planning. As well as the sun-cream and beach towels, you make room in your bags for healthy snacks and a low-fat picnic for the journey, because you can’t rely on motorway service stations to have low-calorie menu options. You stick a couple of extra items of healthy food in your glovebox just in case you get stuck in a traffic jam. You pack that emergency tuna pasta meal that doesn’t need to be kept refrigerated just in case the traffic jam turns out to be a monster of a marmalade. (By the way, terrorists, you’ve really put a spanner in the works when it comes to foreign flight travel, because in the eyes of airport security a low-fat jelly pot might as well be a low-fat gelignite pot, you utter bastards).

When you travel with someone with PWS, you have to check venues and menus in advance of mealtimes to be sure you’ll be able to order something suitable at the right time of day. And if you’re the parent of my particular PWS child, then you also have to check whether a restaurant or pub sells tomato juice, and even more importantly, will add the required large dash of tabasco or Worcestershire sauce to make it spicy.

But I’m making this all sound like a a right pain, when it isn’t. Because after 14 years of this, it becomes second nature: we know which lollipops are under 80 calories; we’re used to strolling along the esplanade, peering at the restaurant menus and opening times a little more closely and a little earlier in the day than most; and we’re canny about splitting that afternoon snack so that our daughter can have some ‘extra’ nibbles on an evening out in the holiday clubhouse, as she watches redcoat wannabes sweat their little socks off. (And boy, with the weather we had, they really were extremely sweaty. I’m convinced that whoever was hidden under the furry, thermal layers of the Mr Bear costume must have been on a drip after each performance). 

We visited theme parks, we rode in cable cars down to The Needles, we got stuck in giant deckchairs, and we played and lazed on the beach where my my husband and little boy built sandcastles and dams whilst my daughter and I read on sun loungers under a parasol, having an English siesta, otherwise known as ‘a little nap’.

We had a blast. A sunny, blazing blast. I’ll remember it. I hope they do, too.

Video is Sex Pistols - Holidays In The Sun. Again, sorry Mum.

Treats

Deciding to have another child wasn’t something we took lightly.

It was five years before my daughter was strong enough for us to consider it. Once we were sure we could cope with the pregnancy lottery again, it took another five years before our numbers came up and we beat the odds.

So she’s got a little brother. A little whirlwind who’s somehow now well on his way to being four years old, although I’m not sure how this has happened so fast.

Having Prader-Willi Syndrome means our daughter’s life revolves around food: she has to be on a strict, low-fat diet, despite being constantly hungry. Not having Prader-Willi Syndrome means our son’s life revolves around Spiderman, saying “poo”, “bum” and “willy” and not having time to be be especially interested in food apart from chocolate and cakes.

So how does our daughter cope? 

We wrestled with the idea of not allowing our boy sweet treats, but felt it unfair to penalise him because of a condition his sister has. Our solution, as usual, is a compromise: he has stuff she’s not allowed but usually when she’s at school and he’s already home from nursery. If she is around then the forbidden food will only be dished out to him at snack or meal times when his sister can have her own low-fat or low-sugar alternative, as part of her carefully-timed, carefully-controlled diet. She doesn’t feel like she’s missing out because she’s excited and thrilled by what’s on her own plate. 

At the same time, she definitely clocks what he’s got. 

For absolute proof of this, you may wish to examine Exhibit A at the top of the page:

"Daniel will be haveing tea soon.

Daniel goes to bed at 7.30.

Daniel will have a bit of time to go to sleep.

Daniel is eating breadsticks.

Daniel is eating organic gingerbread men.

Daniel is haveing tea now."

Video is The Undertones - More Songs About Chocolate And Girls

Related post: Brother

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