My daughter’s three days of adventure on her PGL trip are over.
The activity holiday organised by her school was a huge hit.
Once we’d got through the usual blow by blow, or rather forkful by forkful, account of what she’d eaten, my daughter volunteered the following information about her escapades.
"I had three gos on the zip wire, Mum. I’m not tired. They said I broke the record for falling asleep the quickest in my room. I’m not shattered. I didn’t like the fishcake, but I ate it all up. We couldn’t do fencing because the saw [sic] was broken. I liked it so much, I want to live there. I would like to work at PGL. It stands for Parents Get Lost, you know."
The school have filled out a little diary with nuggets of information about how she joined in with everything, including scaling part of the climbing wall, swinging on a giant swing, wriggling through a tunnel, trampolining, dancing at the disco, and helping tidy and pack.
All summed up with the last diary entry: “An absolute pleasure to take away and we know she had a great time - she kept telling us.”
The adventurer has gone to bed, pink and fragrant from her shower and hair-wash. Calm, serene, sleepy, dreamy, and very very happy.
That was at 7pm. Her brother, on the other hand, has only just gone quiet after spending storytime bouncing up and down on his bed with a pair of pants on his head.
I think this is a courageous, honest, sensitively-handled, angry, and righteous (in the best sense of the word) blog post about an unmentionable subject that needs to be mentioned.
I gave her a big hug and a kiss, and watched her disappear inside, wearing her waterproof mac, trackie bottoms and trainers, and carrying a luminous pink bag that weighs the same as a small hippopotamus.
It’s packed with towels and spare trainers and T-shirts and jumpers and a washbag and a torch and a spangly dress and a swimming cozzie and Bully the cuddly, soft toy bull. (Not a Bully from Jim Bowen’s Bullseye show, although if it was one of those that would be super, smashing, great).
My daughter and her classmates are piling into a minibus and heading to deepest darkest East Sussex, for three days and two nights.
It’s a PGL multi-activity holiday, and they’ll be taking part in all sorts of exciting stuff from fencing and archery to climbing and disco dancing. (I wrote about it in my previous post Intrepid).
It’s the kind of thing kids all over the country do.
It’s the kind of thing my girl does, too.
I never thought she’d be able to take part in something like this. I used to wonder whether she’d ever walk or talk.
Days like these are ordinary and extraordinary.
They're not perfect, though. There's always a tiny improvement that could be made. Today, for example, could have been truly sublime. If only I'd thought to hide my toddler in the luggage rack.
I’ve been mulling over the news for a few days now.
This week, the Government announced that it is to close of 36 of its 54 Remploy factories, putting more than 1,700 jobs at risk. These are state-owned businesses which offer employment for people with disabilities.
These ‘sheltered factories’ are being shut down because it is felt that disabled people don’t want to work in such ‘segregated’ and ‘outdated’ employment. They operate at a loss, because it is expensive to provide an environment in which people with a wide range of disabilities can work in a variety of jobs.
The business is built around their needs. Each worker is heavily subsidised by the state.
Many disability charities support the move. It’s hoped the Government’s Access To Work programme, which gives advice and support to disabled people and employers if a disabled person’s health or disability affects their ability to work, will be ‘better value’.
The aim is that disabled people will be happier and more fulfilled if they are in an integrated working environment, doing valued jobs alongside other members of society.
It’s a nice idea.
Unfortunately, I think in many cases, it’s a pie-in-the-sky, unworkable, utopian fantasy.
I hope that when my daughter grows up she can do some form of work. I want her to feel useful and respected and feel proud of doing her share as part of our community.
I’m under no illusion that this will be easy.
She will need support. She’ll need a lot of supervision: someone helping her focus on tasks, someone making sure she is safe, someone monitoring her access to food.
I can’t see the [average of] £2,900 which could be allocated to her through the Access To Work being a terribly huge incentive to an employer to take her on.
Of course this can be a help to some people.
Battles have been fought and fought hard for disabled people to be included in mainstream life.
But inclusion isn’t always the best option.
My girl has really blossomed in the special school environment. And yet some people would say that it’s wrong to ‘segregate’ disabled children like this.
In fact, her school is very much involved in the community, and has close links and partnerships with mainstream schools in the town.
A bit like Remploy factories, who work with local businesses and communities and give many disabled people pride and respect that I genuinely fear they will struggle to achieve in the profit-driven world of the free market.
There are good employers out there. Many firms give excellent support to their workers who suffer ill health or develop a disability. Funnily enough, businesses aren’t all evil, just like people on benefits aren’t all scroungers.
But I cannot believe that in the current economic climate, with so many people chasing so few jobs, that a couple of grand is going to help persuade employers to take on a disabled worker with complex needs.
I believe that this is, when all’s said and done, another cost-cutting exercise.
Can anyone explain to me why the disabled are high up on the list of people who need to bear the brunt of Government cuts?
It feels like they’ve been mugged already. And now this is kicking them when they’re down.
Meanwhile, the ‘unfairness’ of a mansion tax continues to be debated.
It’s a thought that she can’t shake. It’s an idea that’s stuck. It’s something that goes round and round in her brain.
She’ll mention it. Then she’ll mention it again. And again. And again.
I’m about to use some technical language here, so bear with me. There is, absolutely bugger all chance of getting her to change the subject.
Today’s superglue phrase was “adult single bed”.
My daughter’s friend at school had told her she’d got a new bed. A cabin bed with steps up to the mattress and a little ‘tent’ area underneath.
“How big is Bethany’s bed, Mum?” My daughter asked me, at the beginning of what I didn’t realise then was going to be a Very Long Conversation.
“Oh, it’ll be the same size as yours, it’s just it’s taller and got a bit underneath it. But I should think it’ll be a single bed size.”
“A children’s bed?”
“Well, probably not. Single bed size, I suppose, is an adult size.”
“So an adult single bed, then.”
“Yes. An adult single bed.”
And so it began. This phrase was repeated scores of times as my girl talked to me about it, then to herself, then back to me, and then back to herself.
The great debate was interspersed with supplementary questions. “Why don’t you have an adult single bed, Mum? You’ve got a double one, haven’t you? Is that a double adult single bed? Can a double be a single? Is it an adult bed? Can you get a children’s double bed?”
It got a bit wearing. My husband arrived home. I greeted him with the words: “Can you talk to your daughter about her adult single bed, please, because if I have to say it one more time I’m going to go and play in traffic.”
We had a respite while she ate her tea. Someone with Prader-Willi Syndrome isn’t all that chatty when polishing off every last scrap on their plate. Anything else they’re obsessing about takes a back seat for a while.
But then it was back with a vengeance. I finally cracked. In a reasonably calm manner, but through gritted teeth, I said: “Enough now. It’s not all that interesting talking about beds all the time. Let’s forget about it now.”
She looked at me solemnly.
“OK, Mum. I’m not talking about beds any more. I’m tired. I’m going to bed. I’m going to bed right now. And I’m not talking about beds. It’s not very good is it, to talk about beds. I’m going to got to bed and not talk about beds any more. In my adult single bed. Because that’s what I’ve got: an adult single bed.”
Our daughter is very interested in the size of her dinner. Having Prader-Willi Syndrome means she is always hungry and is obsessed about food, so that moment when her meal is plonked down in front of her is important.
“Is it a big dinner?” she’ll ask, surveying the plate, suspiciously.
“Yes, sweetheart, it’s massive.” I reply.
Although those aren’t the actual words I use.
When she was little, and was getting her words mixed up and jumbled around, she kept saying “mathis” instead of “massive”. It wasn’t a huge leap from there.
“How big is my dinner, Mummy?”
“It’s not just big, darlin’, it’s JOHNNY MATHIS!”
Our entire family uses this phrase now. (Incidentally, putting a meal on a side plate and filling it up right to the edges makes it appear much more Johnny Mathis than having it sit forlornly in the middle of a large dinner plate).
We also have another piece of invented slang derived from musical origins - The Jonny Spencer. This refers to a particularly nuclear nappy-filling (used first for my daughter, later for my son, and now for my great-niece). It's a short form of The Jon Spencer Poos Explosion (do you see what we did there?).
Some people get sniffy about spoonerisms, puerile puns, or poo and bum jokes.
We thrive on 'em. *puts hand under armpit and makes a fart noise*.
Video is Johnny Mathis & Deniece Williams - Too Much, Too Little, Too Late
Video is The Jon Spencer Blues Explosion - She Said
She’s back.
