We have a little system in our house to discourage bad behaviour.
I’m not talking about the tactical use of withering sarcasm that I employ with my husband.
Nor the “If you bite me again I will bite you back harder,” zero tolerance technique that I try on my son. (It’s zero tolerance only in the sense it seems to have zero effect on him).
No, I’m talking about the deeply entrenched and successful Happy Face system for my daughter.
The rules are simple. When she’s good, she gets a Happy Face on a chart. When she’s bad, she gets a Sad Face.
I say chart. It kind of started off that way, but now it’s just in my head because usually I’ve run out of paper, printer ink, or both.
Ten Happy Faces = £2 pocket money on a Saturday. One Sad Face is allowed. Two means no dosh.
It works pretty well. They use something similar at her special school, where if she earns enough points she gets “choose time” or rewards.
Usually, if I’m struggling to get her to listen to me, the threat of that second Sad Face is pretty much guaranteed to grab her attention.
She’ll sometimes squirrel the money away to save up for something big. Or at the moment she’s throwing caution to the wind and insisting I buy her a magazine (If she was more aware of the value of money, I’d swear she was doing this just to get a subsidy as most of these gimmicky kid’s comics are £3.99, anyway).
She’s recently swapped from Dr Who, her favoured publication, to Hello Kitty Magazine.
Yesterday, I found the note pictured at the top of this post. I've assumed it's a draft of a letter my daughter will no doubt shortly ask me to help her send to the editor of that august publication.
And do you know what? Discovering it, reading it: that gave me a Happy Face.
Video is Evan Dando & Chris Brokaw - Paid To Smile
The other day, I met up with a friend I hadn’t seen for a few months.
She’s got a daughter who’s eight months older than mine, but the age gap might as well be eight years. Her girl has just turned fourteen, and is a willowy, beautiful, glamourous teenager, forever Facebooking with her friends, giggling about potential boyfriends, falling out with her best mate only to make up five minutes later, sneaking some sort of Alcopop into her bag for a sleepover, experimenting with too much make-up, leaving her homework until the last minute, and buying 3 inch heels from wherever it is young girls buy 3 inch heels from.
I love my daughter with every last scrap of me.
And yet sometimes I look at my friend’s teenagers and their lives and experiences and potential futures and I wonder. I wonder what my girl would have been like if she didn't have Prader-Willi Syndrome.
If that little bit of that little chromosome hadn’t gone AWOL, my daughter would be a completely different person, and sometimes I wish I could have known her.
But I feel lessened somehow, when I do it. It’s a kind of betrayal, however I dress it up.
I found this in a drawer the other day: a pink, kid’s size Green Day shirt, complete with a disconcertingly cute hand-grenade motif.
It was a present to my daughter from a friend who went to the band’s concert at the National Bowl, Milton Keynes, in the summer of 2005.
It’s faded, full of holes, and way too small for her now.
I looked at it and I remembered her excitement when she got it. I remembered playing Green Day's track Basket Case, so she could hear what they sounded like. I remembered taking this picture of her seconds before she launched into an impromptu pogo session (similar to the Sheena episode). I remember realising too late that the song included the word ‘whore’ (tricky third verse, that), and wondering how I was going to explain that one to her when she asked. As she obviously would.
I remember also thinking, God Green Day really did nick this stuff wholesale from Stiff Little Fingers, didn’t they?
By the way, if you want to read a whole host of stories about people's love affairs with band T-shirts, check out the rather splendid My Band T-Shirt blog.
Video is Green Day - Basket Case (Live)
Video is Stiff Little Fingers - Gotta Getaway (Live)
Looking at it, you might think my daughter has grown up to be some kind of limbo champion, contortionist, or Yoga guru.
But her legs aren’t as bendy as they appear here.
As the years have gone on, her splay-footed walk has become more pronounced. The lower part of her right leg and ankle will only turn outwards so far before it reaches its ‘locking’ point.
We were referred to a specialist clinic for gait analysis a few years back. My girl was bedecked with motion sensors and filmed walking up and down before the results were fed into the computer.
Watching the little pair of skeleton legs ambling along, as the software beamed the data on to the monitor, was fascinating, if a little freaky. The disembodied legs (is that right, or should that be disemtorsoed? That’s not even a word, is it?) had a little roll from side to side that was instantly recognisable. “I can tell that’s her walking, just from her skeleton!” I exclaimed, like an idiot. Actually, I said 'skellington', because, well, I just always do.
The upshot of the analysis was that her odd gait wasn’t any risk to her health. It wasn’t putting undue pressure on any of her bones, so it wouldn’t cause her any unnecessary problems. ‘Straightening’ her walk - which would essentially be for cosmetic reasons, for ‘appearance’s sake’ would involve an operation. A huge one. With pins and bolts, and, no thank you very much. We’d been there and done that with her back. For a slightly more important reason. (To correct a curve that if left alone would eventually get so bad that it would be life-threatening, just in case you’re wondering).
The doctors agreed. No op.
A lifelong membership to the Ministry of Very Slightly Silly Walks is fine.
Video is footage shot on my phone of my daughter’s gait analysis.
Video is Chuck Berry - Johnny B Goode. Extraordinary duck-walking just after 2 minutes in.
It’s a war that takes many forms. A conflict that consists of many different kinds of battle styles. A fundamental disagreement that starkly divides allies.
Tensions are running high. There have been casualties. Small animals have been wounded. Running repairs have had to be made on field vehicles.
Today, the fighting took the form of a sneak attack.
My son, a three-year-old terrorist, crept under the radar and stationed himself in his sister’s room.
He was kitted out, as usual, in his Spiderman top. He was wearing this when he had 30 people in fits of laughter at the fracture clinic the other day, when - ignoring his broken toe - he clambered over chairs and mimed shooting his ‘webs’ at other patients, making a whooshing noise to accompany each of the wrist-flicks. This was until his final flourish, where he made no sound, looked genuinely astonished, and announced: “I’m out of web!”
But I digress.
Spidey had sneaked into his sister’s room and had emptied her box of Animal Hospital toys. He’d got his hands on the plane, helicopter, and assorted animals that needed medical help. And, as usual, when he couldn’t open a little door, or squeeze the little vet into the cockpit, he gave it a thwack on the floor to help the process along.
My daughter, sitting reading downstairs with me, gave me a horrified look.
“He’s in my ROOM! He’s going to break my ANIMAL HOSPITAL stuff, Mum!”
Having a 13-year-old girl who still plays with toys that appeal to much younger children can be awkward when your small son makes it his early life ambition to get his hands on ’em. And from the sounds coming from upstairs, he had definitely got hold of the forbidden treasure.
The emergency mother and daughter SWAT team leapt into action.
Post traumatic stress disorder prevents me from revealing too much about what ensued.
Suffice to say, the toys were recovered. It looked for a moment that we might lose a koala bear, which suffered a tremendous fall down the stairs. And there was one other temporary casualty - my daughter’s specs. They were damaged in the rescue mission. Luckily, a military optician was later able to save them in a delicate procedure involving targeted bending.
Hostilities have since ceased. All is quiet so far today. Too quiet, dammit.
Today's blog is special guest post by Rhona Martin:
What is it like being the sibling of someone with a disability? I'd never been asked this until I was invited to contribute to this blog. I wonder if other siblings of disabled people are asked how they really feel? I hope so. For me it's a loaded question, because it's probably like any brother/sister relationship – laughs, arguments but also extra responsibilities and considerations.
No satisfactory diagnosis was ever offered; back in the mid-1970s, when my brother was three, various explanations like Cerebral Palsy, chromosomal abnormalities and oxygen starvation during birth were bandied about. Whatever it was, it caused certain areas of his brain to develop slowly, while other areas flourished normally. He didn't walk until he was four and his speech was way behind his peers, but he got there – and a more determined person you couldn’t meet. Relentless obstinacy has been his saviour, enabling him to attend the same school as me until he was nine, followed by a specialist school until adulthood.
Fortunately his health has always been robust, but a couple of years ago, after months of hassle from kids in his town, he became very depressed and self-conscious about his looks, so he was prescribed anti-depressants. Naturally, we reassured him he is as good-looking as the rest of his family! He was delighted! He is a vibrant, funny person - full of unconditional love and compassion, with an enormous love of words and fascination with music. Unfortunately his condition has prevented him fully expressing these enthusiasms. Even as a 37-year-old he can barely read or write, despite our efforts to help him. His balance and co-ordination are impaired but he has the mind of a bright but very giddy, imaginative seven-year-old. This creates plenty laughs but has also left me and our Dad weeping with frustration and open-mouthed in disbelief.
We lost our Mum to cancer when I was 14 and my brother was 11. So I instinctively assumed a new and confusing role of a sister with maternal responsibilities. It was easy for me to love and care for him and it distracted me from my profound grief, but at times it has been a bitter-sweet love. I was angry and sometimes embarrassed because he was different, I felt I had to put him first, to defend and protect him from ignorance and prejudice. Rather than having the same carefree self-absorbed outlook of other teenagers, I had other responsibilities and I resented it. Nevertheless it has influenced my outlook, helped create an open-hearted, caring person who is acutely aware of the feelings, emotions and needs of others.
He now has an independent, happy, fulfilling life in his own home, in a nearby town with the aid of a fantastic charity called Enable Scotland who provide live-in carers. He has a part-time job in a recycling centre, an enviable social circle and doesn't need nor expect me to be on standby to save the day. So now it's my time to look after me, be who I'm supposed to be and stop feeling trapped by circumstance, and that’s what I'm doing, just rather later than I anticipated. I am concerned for his future though - how the impending welfare cuts will affect his quality of life or what will happen when I'm the only member of the family left. The worrying has stopped but I'll never stop caring.
Video is The Cocteau Twins - Love's Easy Tears
Thank you Rhona. I know this was a difficult piece to write, but you've done it beautifully.
We went on a journey today. Not one of those poxy X-Factor-style journeys. I’m not trying to add pseudo-intellectual depth to what was - quite literally - a train trip.
On a freezing cold day, my daughter, her "best mate evah!" and me hopped on a First Capital Connect carriage down to London, whizzed through the underground, jumped on a bus and met up with the girls.
The female throng (thong?) consisted of a couple of friends, one with a couple of teeny sprogs.
The Arctic Expeditionary Female Front
Our destination was the Union Chapel in Islington, which as well as being a working church also puts on live shows, including some rather splendid free lunchtime concerts. What with the special deal on Travelcards that got the girls there for the princely sum of £2 each, this was proving a frugal triumph.
Of course, first we had deal with the fact that as the show was at lunchtime, it could potentially impinge on...well...lunch. Our planning left a little to be desired when we stopped off for some pasta at an Italian restaurant, but realised they were still doing their breakfast menu. The smallest look of panic flashed across my girl’s face, before the wonderful waitress gave me a wink and said: “I’ll ask in the kitchen if they’ll do some pasta early for the children, shall I?”
Piney Gir and her bassist, whose sunglasses
presumably came with de-icer
So all was calm and well, and we headed to the venue, stationing ourselves two pews from the front to enjoy live music in a beautiful setting.
First up was an impressive mini-set from the wistful Herons!, whose pianist looked as though her fingers might freeze up in the cold. Then came the extraordinary voice of Mara Carlyle, with some pared-down versions of tracks from her album Floreat which made the hairs on the back of my neck stand up. Or maybe that was just the sub-zero temperatures, again...
Piney Gir and her No.1 Belieber
But it was the final act, Piney Gir, with her 60s Pop-infused songs, who provided something extra special.
You see, Piney was the musical guest at last month’s True Stories Told Live, the event where I spoke about my daughter. And following this, Piney sent me an email saying how much she’d enjoyed my talk, and did I think my girl would like to come and see her play at a free concert?
Piney’s latest CD was duly purchased. A critical listening phase from boy-band loving daughter ensued. I spoke of how we could go and see Piney perform and maybe even say hello and get an autograph after the gig.
And, as promised, when the show finished, before the audience was booted out in order for a wedding ceremony to take place, we nipped to the side of the stage, my daughter clutching a Sharpie pen and her treasured copy of Piney’s CD, Geronimo!
Piney recognised me, and recognised my girl from my description of her in my True Story. She beamed, charmed, chatted and signed a message, and my daughter was shy, starstruck, and thrilled.
I wondered how my daughter would cope today. I wondered if she’d be too cold, tired, or bored to sit watching three acts in a cavernous church. I wondered if she’d be too busy worrying about her next snack or meal to enjoy the actual event. I wondered if the journey would wear her out too much.
But she had a great day. And so it was that on the train on the way back my little girl announced, with suitable gravitas: “I like Piney Gir EQUALLY as much as Justin Bieber.”
Sometimes I need a battle cry to face the day. And now I’ve got a new one. I’m nicking it from Piney. Sometimes you have to leap out of the plane and step into the blue. Sometimes you have to yell: “Geronimo!”
“Who’s Sarah?” I asked my daughter, only half-listening as I cleaned up the kitchen after tea.
“Sarah. She was a girl I had to read to.”
I could see this was going to go in ever decreasing circles if I didn’t focus a little harder. I put down the dishcloth.
“OK. Is she another pupil?” I asked. Direct questions always work best.
“Yes. She’s in Pink Class.”
“How old is she?”
“She’s seven, Mum. I read to her.”
I ignored the repetition and tried to get her to elaborate.
“Why were you reading to her?”
Finally an answer. “The teacher asked me and the other good readers to read books to the children who can’t read.”
It’s only a few years since my daughter regularly came home in tears from mainstream school, because her classmates were leaping up through the reading levels while she lagged behind. It was heartbreaking to see, because she loves books and reading is one of her strengths. She might not be as proficient as the average 13-year-old, but for a girl with a learning disability, she’s not half bad.
Now, at her special school, things are different. Now she’s flying high.
The song is The King Of Rome, performed by The Unthanks and The Brighouse & Rastrick Band. It’s ostensibly about a pigeon. But it’s about more than that, really.
It wasn’t the actual footballer, you understand. That would have been illegal and...well...weird.
No, it was our cat, Luther Blissett, that got interred in a hole and covered up with earth.
The dubiously-monikered moggy - inherited from an unreconstructed Watford fan who had named him after his favourite club striker from the 80s - had been a lovely pet. He was a very patient animal, more akin to a dog than a cat. If you called his name, he’d rouse himself from wherever he was sleeping in the house, and report promptly and dutifully to your lap for a cuddle.
My daughter loved Luther. So when, at an advanced age, he became frail and ill, and we had to have him put down to save him any further suffering, I thought she’d be devastated.
I had a little talk with her, as Luther looked on from his basket, purring. I put on my very serious voice. “Luther is very ill, sweetheart, and Daddy is taking him to the vet’s in a minute. He’s going to have some special medicine that will make him go to sleep forever so he doesn’t hurt any more.”
She looked at me, impassively. I said: “I think you should give him a stroke and say goodbye.” She shook her head. “No, it’s all right, Mum.” And with that, she hopped off the sofa and went to fetch her reading book.
I’d like to add that this whole conversation took place to the sound of a spade scraping through soil, as in my husband had decided to dig Luther’s grave before he took him to be put down. I was tempted to hold my hands over the doomed cat’s ears, but then decided this would be completely ridiculous.
Fast forward an hour. My husband, hairtrigger gravedigger, returns, and walks back through the house with Luther’s still warm body wrapped up in a rug. Suddenly, my disinterested daughter was FASCINATED. “Mummy, Mummy, can I stroke Luther? Can I touch him? Can I say goodbye?”
I let her do what she wanted. Which was obviously the slightly scary, but somehow thrilling act of touching a dead cat.
She really did love him. I showed her the photo printed at the top of this page (which I hasten to add is a picture taken when Luther was healthy and alive, just in case you were wondering), and she beamed and said: “Oh, Luther was the best cat in the world, wasn’t he?”
But the details, the mechanics, the logistics of his death, didn’t phase her in the slightest. Neither did me flushing Rocky the newly-deceased shrimp from her aquarium down the toilet a few weeks ago.
“I’m not upset, Mum,” she said. “It’s not like Rocky was a cat.”
It was just the small matter of ratcheting her scoliosis-twisted spine straight, and drilling in and bolting titanium rods millimetres from her spinal cord so her bones could fuse around the metal (see previous post Straight).
It was just the most agonising day of my life as she was wheeled into surgery that could potentially have left her paralysed.
It was just seeing her in the recovery room, her cheeks and chin distorted from having been operated on face-down for seven hours, and hardly recognising her.
It was just coping with a few terrifying, helpless, morphine-fuelled days of recovery afterwards before she finally returned to any semblance of her old self. (See previous post Phantom).
A few months later - during which time I had popped out her baby brother - my girl had to have a second op.
This was to stick some more scaffolding onto the bottom few vertebrae, and this one was a lot less traumatic.
It only took two and a bit hours. And when we saw her come round in the High Dependency Unit, she gave us a little smile.
The following morning, the consultant on duty was doing his checks. To appreciate what happened next, you have to bear in mind that most children who have a spinal fusion operation (or adults for that matter) feel like they’ve been flattened by a tsunami after this surgery. But Prader-Willi Syndrome, as well as coming with an insatiable appetite, also features a high pain threshold - which in this case was definitely a good thing.
“I don't suppose she's managed any breakfast?” the doctor asked, expecting an answer along the lines of: “No, she’s not felt up to eating anything yet.”
There followed a small pause, then she looked at me, as if she was asking permission to speak.
I nodded, encouraging her. She smiled, shyly, and looked up at him. “Yes!” she said. “I had 'oops."
He looked amazed. But his eyebrows raised a whole inch higher when she added: "And I had tuna bake for tea yesterday. That was LOVELY.”
Video is clip from Life On Mars - "I'm 'avin' 'oops".
Funny that, because I believe in work. I haven't had a full-time job since my daughter was born in 1998, but I have scraped a living instead with various part-time and freelance posts.
So when I say I rely on benefits, I'm not talking for big stuff like housing. Oh no, I'm not up to that level of scrounging. Mine's just small scale.
The few small benefits our family have been able to claim because of my daughter's disability go towards hospital parking, heating, and other luxuries, like food. It means that my part-time work - and my husband's less than astronomical full-time wage - have been enough to live on. And it means that I've been able to be here when my daughter needs me. Which she is going to continue to do, the selfish layabout.
So why am I mentioning this?
Yesterday, MPs rejected a series of proposed House of Lords amendments to the government’s welfare reform bill.
One of the pernicious reversals they voted through was to halve the ‘disabled child element’ of Child Tax Credits.
This is actually a good thing, David Cameron has told us. What it means is that the help can now be focused on those most in need. This, presumably, refers to the whopping £1.23 extra that children with ‘severe’ disabilities will get.
As for the thousands of children whose disabilities aren’t as ‘severe’, their families will see their £52.21 a week 'hand-out' reduced to £25.95.
Oh well, never mind. Relying on benefits, is, apparently, a 'lifestyle choice'. Our daughter shouldn’t have made the choice to be born with Prader-Willi Syndrome.
It wasn’t a bad choice, because it means she can still be a small-scale scrounger, incurring the stoked-up ire of 'hard-working families'.
But she did make one mistake. She chose to be disabled - just not disabled enough.
Video is Voice Of The Beehive - What You Have Is Enough
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