She’s come a long way since she was a little scrap in special care, struggling to feed.
We were lost and the future was terrifying. As she grew stronger, so did we. Every milestone reached bolstered our souls.
I remember strapping her leg splints on, to help strengthen her muscles. Signing to her for months until she finally signed back and made her first sound, her first words. Pimping her walking frame with furry dice to impress the gang at playgroup. Clutching her hand on her first day at school. Waiting for hours as surgeons fused her spine. Grinning as she bottle fed her baby brother.
Time has marched on just as my daughter has marched through life, with a wobbly walk, and some trips and falls along the way.
Twenty-one years is a long time, but it feels like a snap of the fingers. She’s at college. She’s got a tattoo. But she’s still that smily, sweet, stubborn star. I still wish she didn’t have to deal with everything that PWS overloads her with, but I know that she is who she is partly because of it, and she’s amazing. She’s 21.
Song is Snap Your Fingers - Joe Henderson.
We've been helped hugely over the years by the PWSA UK (Prader-Willi Syndrome UK) - an amazing charity who do tremendous work supporting people with PWS, their families, and professionalswho work with them. To find out more about the condition and the charity click here . If you can spare a few quid please click on the Donate Now button on the right hand side of their home page.
Bless me Father, for I have sinned. It’s been a month since my last confession. I say confession, but I mean blog post. By the way, I’m not a Catholic, I’m an atheist. Although I am a multi-faith non-believer when it comes to booking my kids into cheap summer holiday playschemes run by local churches (Baptist and Anglican so far, if you’re interested).
There are reasons for my blogging purdah. The core of them are not about my daughter and her challenges. I could tell you about them. About old age mugging my loved ones, about the doctors, and pharmacies, and the medication that didn't work, about trips to A & E, and hospital parking, and my Mum-in-law nearly dying from dehydration on one ward, and her asking for her husband who’s been dead for 23 years, about my Mum four floors above her in the same hospital with one condition, being released and coming back in agony as an emergency with another, about how she doesn't deserve it, how they both don't deserve it, and about me and my husband doing the whole hospital tag team thing like some rubbish version of Big Daddy and Giant Haystacks. All whilst fitting in work. With the children on school holidays. I could tell you all that, and I just did. If you think I’m after a medal, you’re goddam right. A big shiny one, with chocolate inside the gold foil, if you’re asking.
But we’re getting through it. My girl, with her syndrome that sometimes has her tying herself up in knots of anxiety, has had to deal with a lot of uncertainty, changes to routine, and dreaded grey areas. She’s taken it all in, she’s worried and wobbled, but she’s coped.
There’ve even been glorious moments amongst the grim. Life may sling some shit at you, but it'll still bung you some laughs. I like to think of them as 'chuckle wet wipes':
There was the day I discovered my Dad (aged 80, recovering from a hip operation) managing unexpectedly well at home for three weeks on his own without Mum (thanks to some quick lessons in microwaving ready meals). In fact, at one point I suspected he was auditioning for a new sitcom called Old Men Behaving Badly when I discovered him sitting in the garden in the sun, topless, drinking Spitfire Ale straight from the bottle. If Mum had been there to see that, there would have been a whole new Battle Of Britain. She's back now, she's probably reading this, and er... sorry Dad.
And then there was the time I was driving back from hospital having taken my daughter to see her Grandma, feeling drained and teary and worried that my girl would be worried, and we put Taylor Swift on the car stereo, and we belted out every word and shook out every shake, shake, shake, and grinned and laughed and breathed and shook it all off, ah ah, shook it off, ah ah.
And on Saturday, for the first time for a while, we went away for the night. It was no romantic City Break - in fact, technically, it was my friend’s kid’s 8th birthday party. My daughter had been transported to her Prader-Willi Syndrome Best Friend Forever’s house for a sleepover. My boy was Zebedee-ing on a bouncy castle for hours, generating a large blister but not caring. And I was with my man and a bunch of good mates, kicking back, letting the kids run wild, laughing 'til it hurt, and feeling relaxed. To be honest, it wasn't long before I was relaxed as a newt.
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We’ve got a packed agenda today. Mum-in-law has proved herself a ridiculously tough old bird and rallied after the latest crisis, but doctors’ advice about her dementia and ongoing pain and reduced mobility has finally forced us to face up, man up - no, sod it - woman up, and find a place for her in a care home.
Brother-in-law is down from oop north and has worked tirelessly: wading through Care Quality Commission reports; phoning; visiting; questioning. And he’s secured her a place. An ‘a hell of a lot better than I ever thought’ place at a really nice home, right here in our town; right here, so I can take her to her usual hairdresser every Wednesday; right here so I can drive her to her Thursday Memory Group; right here, so her friends can visit easily; right here, right now. When we went to look round, we all said we were not just OK with it, we were properly happy. I feel she will be safe and genuinely, properly cared for. And I’ve not felt like that with her in her own home for a while, and I didn’t realise what a crushing worry that really was. My daughter came with us to look at the home, the room, the garden, and the koi carp in the pond, and she announced: “I think Grandma will like it.” For some reason, in a peculiarly posh and sage-like manner, she then added: “I don’t she any reason why she shouldn’t.” (By the way, I’ve no idea why my girl has started talking like a dowager duchess. Another particularly proper announcement today was: “It’s 21 degrees, which is simply lovely English weather, don’t you think?”)
We’re gathering Mum-in-law’s photos, treasured possessions, and familiar bits of furniture, to transfer to her new room. And, of course, to pay for what she needs now, we’re kickstarting the whole selling of her house saga.
Phil, the manager, is going to see her in hospital. He said that from our description of her he was sure he’ll be happy to accept her into his care “unless she starts screaming obscenities and coming at me with a knife”. He had a twinkle in his eye. Unless hitherto unseen Ninja Nan tendencies suddenly manifest themselves, I think they’re going to get on. Despite everything, Mum-in-law still has a twinkle or two of her own.
It’s been intense. It isn’t over, by any means. But I feel like I’ve resurfaced.
It's like I've got this music In my mind Saying "It's gonna be all right"
We’ve all done it. You know, turned up to a Mormon Church Hall riding an inflatable horse.
Another entry into The True History Of The Drake Gang was written today, when our little family posse begged, borrowed, and Amazon Primed our outfits for a Prader-Willi Syndrome party with a rootin’ tootin’ theme. My girl met up with some jeans-wearing gene-sharing buddies with the same chromosome disorder as her. They did some colouring in then tucking in, all the while striking up and rekindling their shy, little friendships. My boy behaved impeccably, by which I mean he impeccably re-enacted the horse punching scene from Blazing Saddles. There were a few no-shows, so the party was under-populated compared to previous years. (Anyone who didn’t send their excuses will be rounded up, coralled, and forced to eat humble cow pies). But it didn’t really matter. My cowboy and cowgirl were happy, as was my sombrero-sporting husband, Sleepy Gonzales. Best of all, I discovered the cooling delights of having air-conditioned lower portions thanks to the fan inflating my horse’s arse. Yee, and indeed, haw!
Video is Kirsty MacColl - Don't Come The Cowboy With Me, Sonny Jim
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.
Parents of disabled children are no different to other parents. They like a night off. An evening free from child-wrangling responsibilities is a wonderful thing.
R.E.S.P.I.T.E. Find out what it means to me.
We’re incredibly lucky because my parents are picture-book perfect grandparents who do not protest - at least not out loud to us - when we take advantage of their good nature and dump, sorry entrust, the kids to ’em.
They know the rules with my daughter. She knows they know. Nanna cooks her splendid healthy teas, and her legendary no-sugar fruit cake. Grandad takes on the ‘chasing round the house’ duties with my little boy.
So on Friday we sloped off at lunchtime, to journey through the rain and traffic to see friends in Liverpool. An uproarious night ensued. Taverns and ale were involved. And chat. A lot of chat. The high volume of which had a catastrophic effect on what had been just a slight sore throat at the beginning of the night. By our return on Saturday afternoon I was mute. This is an uncharacteristic state of affairs for me, I have to admit. And today I can still only manage a strangulated squawk.
I had a marvellous time on my night out. Not as marvellous as my husband, though. Because he got to have a night out followed by three days of peace. Now that’s what I call a proper respite.
So I take it all back. Everything I’ve ever said about Justin Bieber.
The auto-tuned automaton has an entirely disproportionate ability to annoy me. This, I’m sure, is part of the reason why my daughter had decided to be ‘into’ him.
My only consolation this year has been the fact that the monstrous Mariah Carey has managed to trap the egomaniacal, little, mop-topped marionette in a department store (according to their appalling All I Want For Christmas duet video) and may well by now have smothered him to death with her enormous fake breasts.
But this Christmas, Justin Bieber, in the form of a Bieber Fever Alarm Clock, was able to put this expression on my girl’s face.
For this, he is forgiven.
Oh, and please don’t feel you actually have to watch the video. I don’t want to ruin your Christmas.
Video is Mariah Carey & Justin Bieber - All I Want For Christmas. It's 'Super Festive!' apparently. That is if your idea of something festive is a 41-year-old woman in an Ann Summers' sexy Mrs Santa outfit rubbing herself up and down a wall and presenting her bottom to the camera, like a baboon on heat.
She used to want to be a policewoman. It made sense: my daughter has always been fascinated with wrongdoers.
I’ve always been fully aware which of her classmates were the rulebreakers, because she’d come home and tell me in great detail which rules had been broken and by who. She’d do this by discussing the miscreants’ crimes with one of her imaginary friends*. (*See previous post Trees)
‘Poppy’ would ask her why Steven was in trouble, and my daughter would shake her head and recount the moment when Miss Reilly had to send him to the headteacher for drawing rude pictures on the wall. (Her description of the picture as a ‘sausage’ leads me to think that Steven may have drawn a penis).
If my girl ever heard a siren, or saw a police car with flashing lights, she would announce, solemnly, that the police were going to arrest some burglars and lock them up in prison, where they would not be given any tea. (The ‘no tea’ bit being the greatest punishment, of course, in the mind of a child with Prader-Willi Syndrome).
But that’s all changed now. She now wants to work in her most favourite place. A place filled with her most favourite (non-edible) things. She wants to be a librarian in our local library.
She’d obviously been thinking about it quite deeply. “Will I be allowed to work in the library? Because if I can’t get a job there, will I have to work in another library somewhere else where I have to get the bus? I don’t really want to get the bus. Am I allowed to work in a library?” She asked all this without taking a breath.
I find it hard to answer these sorts of questions, because I can’t give her the straight yes or no answer she desires. And also (I write, gritting my teeth angrily) because I have no idea whether there’ll even be any public libraries still open when she leaves school.
I think about her learning difficulty and some of the more challenging issues involved with PWS and wonder whether it will be possible for her to have a job at all, let alone the very job she’s set her heart on. I hope she can. She knows she’s different. She knows there are things she can’t do, or isn't allowed to do. But this isn't much to ask, is it?
I need to find out more, about work experience, life-skills courses, charities, schemes, grants, anything that could give her what most people want: the chance to work, and be valued for it. Even if it was just for a few hours, even if it was just voluntary.
If she did end up behind that library counter, there will be HELL to pay if you fold down the corners of your books, or bring them back late. I’m just warning you now.
My girl is 21. 
