When I was nine, I was briefly a member of the Brownies. You'll note I don't say I was a Brownie. That's because I don't feel that I was there long enough to do justice to the uniform. I managed twelve weeks in total - long enough to encompass the Hallowe'en party, the Christmas disco and the New Year pantomime trip. Then, with a long period looming that promised little but washing socks for the Housekeeper's badge, I left, adrenaline junkie that I am, to seek my kicks elsewhere.
Thirty-three years later, I am running, and it's going phenomenally badly, and for some reason the Brownie motto is going around and around my head: Be Prepared. I am not prepared at all. I am running a half-marathon in six weeks' time and I am not prepared for it. I am running to raise money for the National Autistic Society and to raise awareness of autism, because of the experiences of my daughter, who has Asperger's Syndrome, and my daughter is starting secondary school almost RIGHT NOW and I am not prepared for that either, at all.
I don't mean I'm not prepared. I mean I'm not prepared. I've bought her new uniform, and her new shoes, and her new schoolbag. I've bought her some stress balls, and an alarm clock that will wake her with light and natural noises to try to minimise the stress of getting up. I've talked through the transition with her countless times and I've emailed and spoken to the woman who will be coming to pick her up and travel in with her on the bus for the school's statemented kids. But I'm not prepared. My girl is going to a new school, with all the change and people and noise and bustle and smells and demands and schedules and people, people, faces, faces, talking talking talking that that involves for her, and I don't know how she will be and I don't know how to prepare for that. So I am running to get strong at least, but if the level of my running ability is any reflection on my current levels of core strength, then I am royally screwed on that front too.
I have run half a mile and already I am staggering and weaving. There is absolutely nothing in my legs. This is because I have overtrained and underslept, a killer combination. That week in France when I let myself go easy on the runs turned into another week in France when I only did one or two runs, which turned into another week in France (I know - jammy) in which I mainly ate and lay in the sun. And then that turned into a week at home in the sun, eking out the summer, in which I didn't really do much, and and and and suddenly I had seven weeks to get ready to run 13.1 miles and went mad with panic and now here I am and I've just looked at my watch and it's crawling and I'm crawling and I've still got another six miles to do.
Be Prepared. Be Prepared.
As I groan and stagger on I tell myself that the process of getting prepared is simple: I just have to put one foot in front of the other and keep going. If I keep going then hopefully at some point I will find that I am prepared. This is endurance training, after all. They call it that because it hurts, and it teaches you to endure.
So I keep running and though every single minute of the bloody run is bloody torture I am absolutely determined to finish it - because if I don't finish it then I won't have anything to point to and say 'look, I did this, which means I can do .. this', without which I won't get through the week - and so I do finish it. Then I hobble home to tick off the next box on my training plan.
Over the next few days as I chip away at the preparations for my event, and for Grace's event - interval runs, ugh, and sewing her school badge on her blazer skewiff, ugh - I realise that it's not just about being prepared, it's about how you act when the moment arrives. You can prepare all you like, but how you act when the pressure is on is just as important, and Grace, my Grace, always shows grace under pressure, at least in the big picture when you look at what she is coping with every day - what's a few meltdowns between friends and relatives - and so, so can I.
I may not be prepared yet, not really, but I am another step towards being prepared by having remembered that keeping going is important too.
So this one's for everyone who is starting school this week - children and parents alike. You can do it. We'll be right alongside you.
Just keep going.
Just keep going.
I am running the Royal Parks Half-Marathon on October 6 in aid of The National Autistic Society. I will be ready! Meanwhile if you would like to ease the pain of my preparations, please click here
For more information about me and Grace Under Pressure, please click here
Tuesday, 3 September 2013
Tuesday, 16 July 2013
Can You Tell What It Is Yet?
So Vodafone has become the latest global blue-chip to cotton on to the business advantage of having autistic employees.
The telecoms firm has been recruiting people with autism to its offices in Germany, hoping to harness their skills with numbers and patterns to the company's advantage.
They are not the first company to do this. German software firm SAP said in May it hoped to recruit hundreds of people with autism in order to capitalise on their "unique talent" for information technology, after an initial small-scale trial boosted productivity. A week later mortgage finance company Freddie Mac launched a second round of paid internships open only to autistic candidates.
Activists cheered. Neurological diversity was on the way, slowly, but as steadily as race and gender, they said.
However. If you look up the media coverage of this trend, if you were to google, for example 'autism' and 'recruitment' you would find a national newspaper refer to SAP's initiative as a plan to recruit "autism sufferers" . The article is illustrated with a photograph of Dustin Hoffman playing - you guessed it - Rainman. (Ta da!)
That article is the perfect summary of where we are in terms of society's perception of autism. Right there, that's it in a nutshell. We are in a Very Strange Place. I don't believe that SAP believes it is hiring "sufferers", but rather highly efficient people who are uniquely gifted with the kind of skills and insight that SAP thinks will make it a lot of money. I don't believe either that the autistic people whom SAP is hiring view themselves as sufferers. (I do however class as sufferers those of us who have to read that particular newspaper in the interest of research.) The story is skewed because of a failure to see past the big scarlet 'A' of Autism and the view that Autism Is A Bad Thing.
Proof of how entrenched this view is: While Vodafone was probably putting the finishing touches to its recruitment plan, buses in Seattle were driving around bearing this ad, showing a little boy's smiling face alongside the legend "Let's wipe out cancer, diabetes and autism in his lifetime." The children's hospital responsible - a children's hospital! - was forced to apologise and withdraw the ad. There then followed much debate about why listing autism alongside cancer might be wrong. Lots of people, including me, were cross that this was even a debate. Lots of other people, including TV doctor Christian Jessen, suggested we were overreacting. A friend of mine thought that parents who protested were doing so because they were too involved in the minutiae of their stressful, autism-centric lives to see that actually the ad was a great exercise in raising awareness.
Raising awareness. This is the way people who are learning to care often now speak about Worthy Causes and Difficult Topics. I use the term too. But it's not enough, any more, to use it without thinking about what you want people to be aware of. Many people think they know what autism is when they are not fully aware of what autism really is. In my view it is not something that should be included in a list of severe illnesses that can result in death. I would prefer we see autism as something to accept, and celebrate in many cases, rather than something that is better obliterated so we can all be normal, whatever that is.
I know this is relatively easy for me to say because my daughter has a high-functioning form of autism that comes with gifts such as artistic skill and theatrical flair. It is harder to think this way if your child is having a very tough life. It is hard to think this way if your child has very low functioning autism and will live all their life with the mental ability of a very young child. I cannot and would not presume to speak for those parents. But as an autistic friend of mine, who has had cancer, put it: "For many of us with autism it's like putting on a bus: "Let's wipe out cancer, diabetes and women" on the basis that women have period pain and mood swings and therefore their quality of life must be terrible and we should spend billions trying to find a way to turn them into the much more efficiently designed and emotionally stable men. We are not broken things to be fixed." This friend, by the way, has run a business for 13 years with turnover of £14 million and, during all that time, an error rate of 82 pence.
So far, so very weird. How do we explain the dichotomy between companies hiring autistic people for profit and the rest of society fearing and condemning them? This piece written by a mother at the end of her tether with her "demon daughter" set off a lot of alarm bells for me when I read it. A child who refuses to go to bed, get dressed, have her hair brushed, or essentially do anything she doesn't want to? Is that saying anything to you? To the people who left comments beneath the article it said that she was naughty and deserved to have all her toys taken away, straight away.
This baffles me. How can it be that while SAP and Vodafone and Freddie Mac are minting money from employees on the autism spectrum, and while award-winning novels and plays and films about autism surround us, we can simultaneously be in this other place too? How is it that there can be the Treehouse School, with its extraordinary care and calm understanding just a short journey from the educational establishment where for years my daughter and I battled to be helped? (I visited Treehouse today, and was moved to tears at one point by the impact of seeing such a professional and sensitive approach to supporting autistic children.) My daughter has been called naughty. We have been told in the past that bullying was something she brought on herself. But the people who used to think that have learned about her autism diagnosis. My daughter has learned how to temper some of her behaviour. I have learned - though it exasperates me to the point of screaming sometimes - that she just cannot go to sleep much before midnight, and needs her hair brushed with a special brush and won't wear clothes that don't feel nice on her skin. We have all learned a true awareness of Grace's autism. To watch her shine in the school production of Grease last week was all the more glorious for the whole class's joyful celebration of unconventionality and friendship.
It feels as though we are all watching a film in which the camera is panning back very slowly from something we cannot yet make out; as though we are guessing and guessing at the pixellated images as they shift and turn slowly into focus. Some of us have figured it out. Others are still screwing up their faces and tilting their head to the side as they try to size up this thing, whatever it is. Others have made up their mind, regardless of what the final image will show.
We have to continue until we figure it out. If we limit our understanding of autism, dismiss it, or give it an out of date label, we may all end up worse off. As Kate Ravilious said so well in her New Scientist article:
"If the special talents in the population have helped humans to get this far, we may need such different modes of thinking to see us through the next few thousand years. If the past teaches us anything, it's that humanity thrives by being adaptable."
Or, as Barry Gibb put it equally well: "Conventionality belongs to yesterday."
The telecoms firm has been recruiting people with autism to its offices in Germany, hoping to harness their skills with numbers and patterns to the company's advantage.
They are not the first company to do this. German software firm SAP said in May it hoped to recruit hundreds of people with autism in order to capitalise on their "unique talent" for information technology, after an initial small-scale trial boosted productivity. A week later mortgage finance company Freddie Mac launched a second round of paid internships open only to autistic candidates.
Activists cheered. Neurological diversity was on the way, slowly, but as steadily as race and gender, they said.
However. If you look up the media coverage of this trend, if you were to google, for example 'autism' and 'recruitment' you would find a national newspaper refer to SAP's initiative as a plan to recruit "autism sufferers" . The article is illustrated with a photograph of Dustin Hoffman playing - you guessed it - Rainman. (Ta da!)
That article is the perfect summary of where we are in terms of society's perception of autism. Right there, that's it in a nutshell. We are in a Very Strange Place. I don't believe that SAP believes it is hiring "sufferers", but rather highly efficient people who are uniquely gifted with the kind of skills and insight that SAP thinks will make it a lot of money. I don't believe either that the autistic people whom SAP is hiring view themselves as sufferers. (I do however class as sufferers those of us who have to read that particular newspaper in the interest of research.) The story is skewed because of a failure to see past the big scarlet 'A' of Autism and the view that Autism Is A Bad Thing.
Proof of how entrenched this view is: While Vodafone was probably putting the finishing touches to its recruitment plan, buses in Seattle were driving around bearing this ad, showing a little boy's smiling face alongside the legend "Let's wipe out cancer, diabetes and autism in his lifetime." The children's hospital responsible - a children's hospital! - was forced to apologise and withdraw the ad. There then followed much debate about why listing autism alongside cancer might be wrong. Lots of people, including me, were cross that this was even a debate. Lots of other people, including TV doctor Christian Jessen, suggested we were overreacting. A friend of mine thought that parents who protested were doing so because they were too involved in the minutiae of their stressful, autism-centric lives to see that actually the ad was a great exercise in raising awareness.
Raising awareness. This is the way people who are learning to care often now speak about Worthy Causes and Difficult Topics. I use the term too. But it's not enough, any more, to use it without thinking about what you want people to be aware of. Many people think they know what autism is when they are not fully aware of what autism really is. In my view it is not something that should be included in a list of severe illnesses that can result in death. I would prefer we see autism as something to accept, and celebrate in many cases, rather than something that is better obliterated so we can all be normal, whatever that is.
I know this is relatively easy for me to say because my daughter has a high-functioning form of autism that comes with gifts such as artistic skill and theatrical flair. It is harder to think this way if your child is having a very tough life. It is hard to think this way if your child has very low functioning autism and will live all their life with the mental ability of a very young child. I cannot and would not presume to speak for those parents. But as an autistic friend of mine, who has had cancer, put it: "For many of us with autism it's like putting on a bus: "Let's wipe out cancer, diabetes and women" on the basis that women have period pain and mood swings and therefore their quality of life must be terrible and we should spend billions trying to find a way to turn them into the much more efficiently designed and emotionally stable men. We are not broken things to be fixed." This friend, by the way, has run a business for 13 years with turnover of £14 million and, during all that time, an error rate of 82 pence.
So far, so very weird. How do we explain the dichotomy between companies hiring autistic people for profit and the rest of society fearing and condemning them? This piece written by a mother at the end of her tether with her "demon daughter" set off a lot of alarm bells for me when I read it. A child who refuses to go to bed, get dressed, have her hair brushed, or essentially do anything she doesn't want to? Is that saying anything to you? To the people who left comments beneath the article it said that she was naughty and deserved to have all her toys taken away, straight away.
This baffles me. How can it be that while SAP and Vodafone and Freddie Mac are minting money from employees on the autism spectrum, and while award-winning novels and plays and films about autism surround us, we can simultaneously be in this other place too? How is it that there can be the Treehouse School, with its extraordinary care and calm understanding just a short journey from the educational establishment where for years my daughter and I battled to be helped? (I visited Treehouse today, and was moved to tears at one point by the impact of seeing such a professional and sensitive approach to supporting autistic children.) My daughter has been called naughty. We have been told in the past that bullying was something she brought on herself. But the people who used to think that have learned about her autism diagnosis. My daughter has learned how to temper some of her behaviour. I have learned - though it exasperates me to the point of screaming sometimes - that she just cannot go to sleep much before midnight, and needs her hair brushed with a special brush and won't wear clothes that don't feel nice on her skin. We have all learned a true awareness of Grace's autism. To watch her shine in the school production of Grease last week was all the more glorious for the whole class's joyful celebration of unconventionality and friendship.
It feels as though we are all watching a film in which the camera is panning back very slowly from something we cannot yet make out; as though we are guessing and guessing at the pixellated images as they shift and turn slowly into focus. Some of us have figured it out. Others are still screwing up their faces and tilting their head to the side as they try to size up this thing, whatever it is. Others have made up their mind, regardless of what the final image will show.
We have to continue until we figure it out. If we limit our understanding of autism, dismiss it, or give it an out of date label, we may all end up worse off. As Kate Ravilious said so well in her New Scientist article:
"If the special talents in the population have helped humans to get this far, we may need such different modes of thinking to see us through the next few thousand years. If the past teaches us anything, it's that humanity thrives by being adaptable."
Or, as Barry Gibb put it equally well: "Conventionality belongs to yesterday."
Grace Under Pressure: Going the distance as an Asperger's Mum is published by Piatkus. Details here. It will be published in the United States by New World Library in September. Details here
I will be running the Royal Parks half-marathon in October to raise funds - and awareness! - for autism. If you liked this article, please click here to sponsor me.
Sunday, 14 July 2013
High School Musical
I am sitting on an uncomfortable little chair again.
The orange bucket seat is hard underneath me, its short plastic legs perilously splayed. The set-up has got no more comfortable since last year's school show, or the one before. Lines of parents in front of me shift uncomfortably in their Lilliputian pews. Betty, at my side, has already decided that she'd rather stand, and is hopping from foot to little foot, sandals clacking on the parquet floor, as she tries to launch herself above the audience blocking her view.
"Where's Grace?" she asks. "Where is she?"
I tell her that Grace is getting ready and will be along soon. Then I look down the row to Grace's dad, to her stepbrothers J and D and to her stepdad, all of whom look as though they too would be hopping from foot to foot to see her, if convention allowed. I smile, and they all smile back, and we sit a little longer listening to the blarts and burps of the band warming up, and the buzz of people arriving. It is hot, and the air conditioning is not quite keeping up. The stage is set with a canvas, bathed in a sultry red light, which bears the legend: Rydell High School. I have butterflies in my stomach.
Just as I am about to check my watch for the seventh time, two women stop beside my seat. One I know well, the other is a familiar face at the school gates for the last several years. They look down at me with the shiny excitement of people who are about to hand you the perfect present to unwrap. "Haven't you seen it yet? Haven't you seen her?" they ask. I smile and shake my head and tell them that Grace's aunties came the night before last. "She's amazing!" says one. "Amazing," concurs the other, grinning. "Such a voice!" They nudge me and then each other, mouthing O's of amazement and waggling their eyebrows in glee at me and I can feel that suddenly, I am beaming. "You wait, there'll be tears! You're going to have a little cry tonight, you are!" they promise me, and leave, chuckling and casting mischievous looks over their shoulders while bustling to their seats, for it's clear that the show is about to start.
My stomach is doing flips now: I feel as though I am perched at the top of a rollercoaster track, awaiting the swooping departure down.
Then suddenly, the band is playing that unmistakeable tune and everyone in the audience goes: ooh, and thrills a little bit, and the children are marching on and there is Grace and oh my god she's so beautiful and her eyes are bright and she's looking for me while she sings, searching the rows and she's found me and - though I wouldn't have thought it possible - she lights up a bit more and she sings straight to me, shoulder to shoulder with her classmates:
"We take the pressure and we throw away
Conventionality belongs to yesterday
There is a chance that we can make it so far
We start believing now that we can be who we are - "
and I am lost already, rummaging in my handbag for a tissue. The audience is already clapping in time and whistling and the children all stand a bit straighter and grin out at us from under the lights. The song finishes and - before a word of dialogue is uttered - the place goes barmy. Whoops and cheers and whistles from the audience seem to push out the walls and the doors and the roof - surely the room can't contain such sonic pressure - and Betty puts her hands over her ears in sudden shock. I am whooping along with the rest, while wondering how I'm going to make it through to the end without being reduced to a puddle of salt water.
But the show has started properly now and the kids are talking, exchanging pretty lines and pert put-downs, strutting around the stage like they own it - because tonight, they really do. Danny is played by a tiny trim-lined lothario in black with a bouffant and liquid eyes - a dead ringer for Prince, circa 1982, minus the stack heels; Sandy in yellow cardie and skirt is played with sweet earnestness by a blue-eyed, blonde beauty. They are lovely. But I can't take my eyes off Grace for long. She is playing one of the Pink Ladies - Marty, with her boyfriends and gum and diamante sunglasses, big hair and vulnerable gobbiness - and she has it down pat. She lays on the wicked asides, rolling her eyes and pulling faces for the audience, and we love it. The minutes whizz by - I haven't had this much fun for ages - and suddenly it's time for her solo.
The dialogue dies away and Grace walks to the middle of the stage and her co-stars form an expectant circle around her. The band gives her a cue, and she opens her mouth and somehow Tina Turner has appeared from somewhere. Grace's voice is huge and absolutely on the money and the audience to a man sits back and goes: whoah. I am so proud I feel as though I could burst out of my clothes. And - bugger it - I am crying again, while beaming at her as she looks for my approval while she sings. When she finishes, the hall goes nuts again. As we file out for the interval several more mums come to me and tell me what a talent my daughter has, how great her singing is, and I gush back excitedly thank you, she does and it is and isn't your boy wonderful and your girl is just great and just like that old hurts pass and Grace and I are part of the community again.
Then the show goes on, and on. I can't feel my buttocks and I have cramp in my legs, but the torture of my seating barely matters. The Rizzo sisters come on - the role split into two here to showcase more talent. They are the Tweedledum and Tweedledee of tartness, the gorgeous girls playing them bubbling with wicked pleasure at some of the verbal slap-downs they get to deliver to their male classmates, who wince theatrically, and stagger about for laughs (which they get in bucket-loads.) The dance competition arrives, and the class bounces so high to the hand-jive that the audience laughs out loud and loves them all even more. Cha-Cha, stealing both Danny and the trophy, is played to delicious perfection by another beauty, with ebony hair and tight, effortless dance moves that make us all gasp.
As the children gather for the final number, my mind goes back over the past few years, over Grace's experiences at this school. I remember the hurts and the endless visits to the office, the nights in the kitchen going over the latest incident and the latest row and the latest fights in class. I remember the hours spent trying to summon up help, and cut our way through the thicket of bureaucracy put up to stop us finding the pot of gold we needed. I remember the weeks of feeling so lonely and so worried for my lonely, worried girl. I remember that in the end, help did come, and with it awareness and tolerance and friendship.
Grace is standing in the middle of the stage now, in a row of children, with her arms around the classmates to either side, and their arms around her. They are swaying, and singing:
"We go together like ramma lamma lamma ka dinga da dinga dong
Chang chang changity chang shoo bop that's the way it should be, woooo yeah!"
- and in the middle of the silly lyrics it seems they all realise too that they've all come together, grown up together and made this wonderful thing together, and they hug each other and sing -
"We'll always be together
We'll always be together.."
After the show, Grace asks if she can stay for the after-party please. I hug her and tell her of course she can. I tell her she was wonderful, and I love her so much - but she is already gone, running down the corridor. Her friends are waiting.
Grace Under Pressure: Going the distance as an Asperger's Mum is published by Piatkus in the UK. Details here.
It will be published in the United States by New World Library in September. Details here
The orange bucket seat is hard underneath me, its short plastic legs perilously splayed. The set-up has got no more comfortable since last year's school show, or the one before. Lines of parents in front of me shift uncomfortably in their Lilliputian pews. Betty, at my side, has already decided that she'd rather stand, and is hopping from foot to little foot, sandals clacking on the parquet floor, as she tries to launch herself above the audience blocking her view.
"Where's Grace?" she asks. "Where is she?"
I tell her that Grace is getting ready and will be along soon. Then I look down the row to Grace's dad, to her stepbrothers J and D and to her stepdad, all of whom look as though they too would be hopping from foot to foot to see her, if convention allowed. I smile, and they all smile back, and we sit a little longer listening to the blarts and burps of the band warming up, and the buzz of people arriving. It is hot, and the air conditioning is not quite keeping up. The stage is set with a canvas, bathed in a sultry red light, which bears the legend: Rydell High School. I have butterflies in my stomach.
Just as I am about to check my watch for the seventh time, two women stop beside my seat. One I know well, the other is a familiar face at the school gates for the last several years. They look down at me with the shiny excitement of people who are about to hand you the perfect present to unwrap. "Haven't you seen it yet? Haven't you seen her?" they ask. I smile and shake my head and tell them that Grace's aunties came the night before last. "She's amazing!" says one. "Amazing," concurs the other, grinning. "Such a voice!" They nudge me and then each other, mouthing O's of amazement and waggling their eyebrows in glee at me and I can feel that suddenly, I am beaming. "You wait, there'll be tears! You're going to have a little cry tonight, you are!" they promise me, and leave, chuckling and casting mischievous looks over their shoulders while bustling to their seats, for it's clear that the show is about to start.
My stomach is doing flips now: I feel as though I am perched at the top of a rollercoaster track, awaiting the swooping departure down.
Then suddenly, the band is playing that unmistakeable tune and everyone in the audience goes: ooh, and thrills a little bit, and the children are marching on and there is Grace and oh my god she's so beautiful and her eyes are bright and she's looking for me while she sings, searching the rows and she's found me and - though I wouldn't have thought it possible - she lights up a bit more and she sings straight to me, shoulder to shoulder with her classmates:
"We take the pressure and we throw away
Conventionality belongs to yesterday
There is a chance that we can make it so far
We start believing now that we can be who we are - "
and I am lost already, rummaging in my handbag for a tissue. The audience is already clapping in time and whistling and the children all stand a bit straighter and grin out at us from under the lights. The song finishes and - before a word of dialogue is uttered - the place goes barmy. Whoops and cheers and whistles from the audience seem to push out the walls and the doors and the roof - surely the room can't contain such sonic pressure - and Betty puts her hands over her ears in sudden shock. I am whooping along with the rest, while wondering how I'm going to make it through to the end without being reduced to a puddle of salt water.
But the show has started properly now and the kids are talking, exchanging pretty lines and pert put-downs, strutting around the stage like they own it - because tonight, they really do. Danny is played by a tiny trim-lined lothario in black with a bouffant and liquid eyes - a dead ringer for Prince, circa 1982, minus the stack heels; Sandy in yellow cardie and skirt is played with sweet earnestness by a blue-eyed, blonde beauty. They are lovely. But I can't take my eyes off Grace for long. She is playing one of the Pink Ladies - Marty, with her boyfriends and gum and diamante sunglasses, big hair and vulnerable gobbiness - and she has it down pat. She lays on the wicked asides, rolling her eyes and pulling faces for the audience, and we love it. The minutes whizz by - I haven't had this much fun for ages - and suddenly it's time for her solo.
The dialogue dies away and Grace walks to the middle of the stage and her co-stars form an expectant circle around her. The band gives her a cue, and she opens her mouth and somehow Tina Turner has appeared from somewhere. Grace's voice is huge and absolutely on the money and the audience to a man sits back and goes: whoah. I am so proud I feel as though I could burst out of my clothes. And - bugger it - I am crying again, while beaming at her as she looks for my approval while she sings. When she finishes, the hall goes nuts again. As we file out for the interval several more mums come to me and tell me what a talent my daughter has, how great her singing is, and I gush back excitedly thank you, she does and it is and isn't your boy wonderful and your girl is just great and just like that old hurts pass and Grace and I are part of the community again.
Then the show goes on, and on. I can't feel my buttocks and I have cramp in my legs, but the torture of my seating barely matters. The Rizzo sisters come on - the role split into two here to showcase more talent. They are the Tweedledum and Tweedledee of tartness, the gorgeous girls playing them bubbling with wicked pleasure at some of the verbal slap-downs they get to deliver to their male classmates, who wince theatrically, and stagger about for laughs (which they get in bucket-loads.) The dance competition arrives, and the class bounces so high to the hand-jive that the audience laughs out loud and loves them all even more. Cha-Cha, stealing both Danny and the trophy, is played to delicious perfection by another beauty, with ebony hair and tight, effortless dance moves that make us all gasp.
As the children gather for the final number, my mind goes back over the past few years, over Grace's experiences at this school. I remember the hurts and the endless visits to the office, the nights in the kitchen going over the latest incident and the latest row and the latest fights in class. I remember the hours spent trying to summon up help, and cut our way through the thicket of bureaucracy put up to stop us finding the pot of gold we needed. I remember the weeks of feeling so lonely and so worried for my lonely, worried girl. I remember that in the end, help did come, and with it awareness and tolerance and friendship.
Grace is standing in the middle of the stage now, in a row of children, with her arms around the classmates to either side, and their arms around her. They are swaying, and singing:
"We go together like ramma lamma lamma ka dinga da dinga dong
Chang chang changity chang shoo bop that's the way it should be, woooo yeah!"
- and in the middle of the silly lyrics it seems they all realise too that they've all come together, grown up together and made this wonderful thing together, and they hug each other and sing -
"We'll always be together
We'll always be together.."
After the show, Grace asks if she can stay for the after-party please. I hug her and tell her of course she can. I tell her she was wonderful, and I love her so much - but she is already gone, running down the corridor. Her friends are waiting.
Grace Under Pressure: Going the distance as an Asperger's Mum is published by Piatkus in the UK. Details here.
It will be published in the United States by New World Library in September. Details here
Wednesday, 15 May 2013
You Keep Doing Your Thing, We'll Keep Doing Ours
Question: what's the worst part about going for a run in the pouring rain?
Answer: the first five minutes. Then the next five, then the next ...
The streets are deserted, the sky prematurely black. The water slashes through the air and arrows into the ground at my feet. Orange pools of precipitation are illuminated at regular intervals by the streetlamps that line the avenue down which I am running. It feels more like November than May.
I am moving fast, pumping my arms and driving my toes down, sprinting. My heart is thumping. My breath sounds in hard, deliberate pants as I work to keep everything in rhythm and maintain this speed. I have turned my music up so loud that I can practically hear it in the fillings of my back teeth.
I am here again, running on rage and desperation and because at times like this it's the thing that I do.
This time, this run, the picture in my head is again Grace's face.
This time it's her big eyes seeking mine in my bedroom mirror as I stand behind her and brush out her beautiful hair after her bath. The air is warm from the hairdryer and scented with her shampoo.
"Mummy," she says. "Some people in my class used my name like a dirty word today."
Goddamn it, I think. Are we still not past this? Does it still, always and despite the rest, have to come back to this?
Grace is having a great week. This is a surprise, frankly, because she is sitting her SATS tests this week. Every day she goes in and sits with her teaching assistant in a quiet room and works her way through the examination papers. Some are straightforward for her, and it's simply a question of keeping her attention focused. Some, like the maths papers she is sitting today, might as well be in Japanese. But she is going in every day smiling and holding herself together and ready to do her best.
Evenings too, when I had been expecting her to burst out of her tight wrapping, have been lovely. Last night Grace and her sister giggled their way through a Wallace and Gromit film - Grace reading every plasticine expression accurately and turning laughing eyes to me to share the moment while Betty guffawed into a biscuit at the other end of the sofa.
Evenings too, when I had been expecting her to burst out of her tight wrapping, have been lovely. Last night Grace and her sister giggled their way through a Wallace and Gromit film - Grace reading every plasticine expression accurately and turning laughing eyes to me to share the moment while Betty guffawed into a biscuit at the other end of the sofa.
Grace is doing so well. I had been thinking about a happy blog!
Instead I am running and the details of the latest niggling nastiness go around my head as I run. I hear again the snide tones she mimicked in recounting what was said. It is so little and yet so much to hear your own name turned into a thing of contempt. I fume to think of the small-hearted people using so ill the beautiful name that I gave my daughter.
I turn off the avenue and turn down a hill, through a park and onto a footpath into the woods. The trees curl over me, the mulchy turf springs underfoot. Everything is everywhere shades of green. This is how I imagine it must be to surf right through the barrel of a wave, with the outside light turning everything to shades of jade and emerald. I am soaking wet and yet entirely calm: I feel as though I am encased in a glass bottle. The music in my ears has receded to background noise.
The peace washes over me and I think: it's ok, we know what to do and we'll just keep on doing it. Grace has talked things through with me and tomorrow she will go forward again with courage and calm determination. Tomorrow I will keep running and I will raise money and raise awareness and write and talk and shout when I must.
The peace washes over me and I think: it's ok, we know what to do and we'll just keep on doing it. Grace has talked things through with me and tomorrow she will go forward again with courage and calm determination. Tomorrow I will keep running and I will raise money and raise awareness and write and talk and shout when I must.
So we'll all go on. Grace and I and our family are pretty happy, actually. As for those people who still seem incapable of summoning any sensitivity or acceptance, we will accept them instead.
As I run around the final corner and arrive once again at the gate of my house, looking forward to going inside and drying off and seeing Grace, I speak to those people in my head.
You go on doing what you do, I tell them. We'll keep on doing what we do. The thing that we do makes life better for everyone. What about yours?
I will be running the Royal Parks half-marathon again in October to raise money for the National Autistic Society. If you would like to know more, please click here
As I run around the final corner and arrive once again at the gate of my house, looking forward to going inside and drying off and seeing Grace, I speak to those people in my head.
You go on doing what you do, I tell them. We'll keep on doing what we do. The thing that we do makes life better for everyone. What about yours?
I will be running the Royal Parks half-marathon again in October to raise money for the National Autistic Society. If you would like to know more, please click here
Monday, 15 April 2013
On running, and remembering, and rebooting
It's Monday morning, and I am running.
I'm not at all sure how this happened.
To my left is the brook, swollen by recent rain. To my right, dense undergrowth thick with green spring shoots. I look down - those appear to be my feet, in my beloved Mizunos, going at a decent pace along the gritty pathway. I look up, and the spring breeze is fresh on my face.
Conclusion: I am definitely running. And more - I have made it outside.
This is a big deal. I am upright and striding, after spending much of the last five weeks with my head down and my arms wrapped around my knees, enduring another bad dip into depression. I have slept little, cried more, bored those around me even more still. (Not that they ever let on.) I have been under the weather with a dozen niggling ailments: unwell, tired and thoroughly fed up. I have not been good company, though I have switched on smiles as often as I could manage. I have made it to the gym a few times, telling myself - look, I am still running - as I padded listlessly along on the steady soft turn of the treadmill, barely breaking a sweat, and barely making it to three miles.
Now, however, I am turning out past the golf course and running up towards the meadows. This is an old favourite route that I have not run for more than a year. Up ahead is a nasty hill, swiftly followed by a gleeful skip down the other side for half a mile, past grazing cattle and ancient hawthorns. The sun disappears behind a cloud, briefly, then glides out again. A gust of wind pushes me along encouragingly. Alongside me, my shadow keeps time, arms and ponytail swinging.
I try to breathe evenly and brace for the incline which is coming, while my mind rewinds this morning's events.
It's the start of term, of course, so there have been tears, of course, and shouting, of course, as Grace transitions into a different routine. Just thinking of it makes my chest constrict. I feel again that downward lurch of sadness in my stomach that now marks the start of every day for me, now as natural and expected as the blink and the yawn and the switching off of my alarm. But I have no time to wallow - here comes the hill, and it hurts. I am gasping, running on my tip-toes in an effort to keep moving, expecting to be overtaken by snails and pensioners at any moment. Finally, I drag myself to the top and make my way through the gate and there is the lovely path back down.
I've covered three miles and my heart is pounding. I am so unfit. My running kit is a lot tighter than I'd like it to be. I suspect my face is a lot redder than I'd like it to be. But I am still moving and as I progress my mind turns over what happened this morning and I realise that the shouting came from me, and the pain of the morning came from me. Grace did not want to wake, or get out of bed, or get dressed. But - hopping through mud now, skipping side to side past the deepest puddles and splashing through the shallowest - I can see more clearly what happened. The physical exertion is freeing me from my anxiety and doomy interpretation, and a light goes on in my head. Grace's distress came from simply having to get up, I realise, not from the prospect of going to school. If I had been more patient and perceptive, I would have seen this, and recognised the victory. Instead, my resources at zero, I lost my temper when I discovered her still under her duvet on the sixth attempt of rousing her, and as she wailed, so did I.
I am approaching four miles now, and I am shattered. This is not a gentle run, it's a cross-country hike. I am now splashing through a stream, ankles scratched by brambles. My face feels like a beacon that could light up all the surrounding countryside in the dark. There has been no respite from the run downhill given the mud, and now here comes the next uphill: a real stinker that goes on for ages and provides no cover, so my stumbling progress is on display for all local dog walkers to see while the sparseness of trees and bushes lets the wind get at me, and attempt to buffet me back down the way I came.
And yet, I am smiling. I feel absolutely fantastic, while simultaneously done for. I can feel my energy bank filling up again even as the muscles in my backside groan and burn. (Welcome to the contradiction that is running folks: the more you do, the more tired you get, the fitter you become, the higher your energy levels.) I feel full of purpose and clarity. How could I have left it this long to get back out here? I have no idea, other than that I could simply no longer ignore the constant pulse of the message: just do it.
I make it back home after five miles. It was a very slow five miles. It was a very painful five miles. I think of the twenty-one extra miles that I ran almost exactly a year ago and I wonder who on earth that was. It was a wonderful five miles. It was the start of very many more. I'm already planning tomorrow's route. I won't let this lapse happen again.
And now, I can't wait to go and get Grace from school and hear about her day. For some reason, I think she will have had a good one. Onwards.
I'm not at all sure how this happened.
To my left is the brook, swollen by recent rain. To my right, dense undergrowth thick with green spring shoots. I look down - those appear to be my feet, in my beloved Mizunos, going at a decent pace along the gritty pathway. I look up, and the spring breeze is fresh on my face.
Conclusion: I am definitely running. And more - I have made it outside.
This is a big deal. I am upright and striding, after spending much of the last five weeks with my head down and my arms wrapped around my knees, enduring another bad dip into depression. I have slept little, cried more, bored those around me even more still. (Not that they ever let on.) I have been under the weather with a dozen niggling ailments: unwell, tired and thoroughly fed up. I have not been good company, though I have switched on smiles as often as I could manage. I have made it to the gym a few times, telling myself - look, I am still running - as I padded listlessly along on the steady soft turn of the treadmill, barely breaking a sweat, and barely making it to three miles.
Now, however, I am turning out past the golf course and running up towards the meadows. This is an old favourite route that I have not run for more than a year. Up ahead is a nasty hill, swiftly followed by a gleeful skip down the other side for half a mile, past grazing cattle and ancient hawthorns. The sun disappears behind a cloud, briefly, then glides out again. A gust of wind pushes me along encouragingly. Alongside me, my shadow keeps time, arms and ponytail swinging.
I try to breathe evenly and brace for the incline which is coming, while my mind rewinds this morning's events.
It's the start of term, of course, so there have been tears, of course, and shouting, of course, as Grace transitions into a different routine. Just thinking of it makes my chest constrict. I feel again that downward lurch of sadness in my stomach that now marks the start of every day for me, now as natural and expected as the blink and the yawn and the switching off of my alarm. But I have no time to wallow - here comes the hill, and it hurts. I am gasping, running on my tip-toes in an effort to keep moving, expecting to be overtaken by snails and pensioners at any moment. Finally, I drag myself to the top and make my way through the gate and there is the lovely path back down.
I've covered three miles and my heart is pounding. I am so unfit. My running kit is a lot tighter than I'd like it to be. I suspect my face is a lot redder than I'd like it to be. But I am still moving and as I progress my mind turns over what happened this morning and I realise that the shouting came from me, and the pain of the morning came from me. Grace did not want to wake, or get out of bed, or get dressed. But - hopping through mud now, skipping side to side past the deepest puddles and splashing through the shallowest - I can see more clearly what happened. The physical exertion is freeing me from my anxiety and doomy interpretation, and a light goes on in my head. Grace's distress came from simply having to get up, I realise, not from the prospect of going to school. If I had been more patient and perceptive, I would have seen this, and recognised the victory. Instead, my resources at zero, I lost my temper when I discovered her still under her duvet on the sixth attempt of rousing her, and as she wailed, so did I.
I am approaching four miles now, and I am shattered. This is not a gentle run, it's a cross-country hike. I am now splashing through a stream, ankles scratched by brambles. My face feels like a beacon that could light up all the surrounding countryside in the dark. There has been no respite from the run downhill given the mud, and now here comes the next uphill: a real stinker that goes on for ages and provides no cover, so my stumbling progress is on display for all local dog walkers to see while the sparseness of trees and bushes lets the wind get at me, and attempt to buffet me back down the way I came.
And yet, I am smiling. I feel absolutely fantastic, while simultaneously done for. I can feel my energy bank filling up again even as the muscles in my backside groan and burn. (Welcome to the contradiction that is running folks: the more you do, the more tired you get, the fitter you become, the higher your energy levels.) I feel full of purpose and clarity. How could I have left it this long to get back out here? I have no idea, other than that I could simply no longer ignore the constant pulse of the message: just do it.
I make it back home after five miles. It was a very slow five miles. It was a very painful five miles. I think of the twenty-one extra miles that I ran almost exactly a year ago and I wonder who on earth that was. It was a wonderful five miles. It was the start of very many more. I'm already planning tomorrow's route. I won't let this lapse happen again.
And now, I can't wait to go and get Grace from school and hear about her day. For some reason, I think she will have had a good one. Onwards.
Tuesday, 2 April 2013
It's World Autism Awareness Day. So what are we supposed to be doing?
Today you will hear a lot about autism. The word will be underlined, emphasised, hashtagged. People will talk about what it means and how it presents. The blogging community will be busy. Stories will be exchanged. Calls for action will echo around the world and the web.
But as I sit here at the start of this day to think about how I can contribute, I find myself rather trying to define awareness and wondering what is expected of me in that regard. I am wondering how aware I really am of something that I first learned about only three years ago when my daughter was diagnosed.
What is awareness? Is it to know that something exists? Or is it to understand what that something is? Clearly, there's a big difference. I'm aware of particle physics but if you asked me to explain its application in every day life, or to build the next Large Hadron Collider, I'd have to admit to significant gaps in my understanding that prevent me from doing either of those things.
The definition of autism according to the UK's National Autistic Society is a lifelong developmental disability that affects how a person communicates with, and relates to, other people. It also affects how they make sense of the world around them. It is a spectrum condition, which means that it affects people in difference ways.
I am still learning how autism affects my daughter. Today, this year, I think I am better aware than I was on this day last year. On this day last year, I knew a bit more than I did the previous year. I hope that on this day next year I'll have a better understanding still.
My daughter knows what autism is because she lives with it every day. Every day she teaches me a bit more about it. As a result I can now anticipate some of her needs and support her. Other things still catch me by surprise. My ability to be aware fluctuates with my energy levels. Being aware of autism also means being aware of my own resources to deal with it. There are days when I struggle. There are days when guilt and worry dominate. There are also days when pride and delight in my wonderful, differently-wired child persuade me that life is good after all.
To be honest, I'm not sure whether I'll ever really be completely aware of what autism means. I can't get inside my daughter's life, no matter how hard I try. I can only be aware of what the outside looks like.
But here's the thing: it's not just about awareness. Awareness is just something we say to get you started. It's also about understanding and sometimes that means using your imagination. So I keep trying to imagine what the inside experience of autism is. Even though it's the hardest thing I'll ever have to do, and a lot more daunting than particle physics. Building a Large Hadron Collider from scratch would be easier.
And along the way I find that there's a third phase after awareness and understanding. There's acceptance. I have accepted autism. I have accepted my daughter's differences. It's a process I have to work on every day. Today is just another day, but no less important for that.
So here's to awareness and understanding and acceptance. And to love, which makes it all possible. Happy day, Gracie darling. Thank you for your patience and your understanding of my lack of understanding. I love you.
Piatkus are giving away five copies of my book, Grace Under Pressure: Going the distance as an Asperger's Mum, to celebrate World Autism Awareness Day. To enter the competition, click here
But as I sit here at the start of this day to think about how I can contribute, I find myself rather trying to define awareness and wondering what is expected of me in that regard. I am wondering how aware I really am of something that I first learned about only three years ago when my daughter was diagnosed.
What is awareness? Is it to know that something exists? Or is it to understand what that something is? Clearly, there's a big difference. I'm aware of particle physics but if you asked me to explain its application in every day life, or to build the next Large Hadron Collider, I'd have to admit to significant gaps in my understanding that prevent me from doing either of those things.
The definition of autism according to the UK's National Autistic Society is a lifelong developmental disability that affects how a person communicates with, and relates to, other people. It also affects how they make sense of the world around them. It is a spectrum condition, which means that it affects people in difference ways.
I am still learning how autism affects my daughter. Today, this year, I think I am better aware than I was on this day last year. On this day last year, I knew a bit more than I did the previous year. I hope that on this day next year I'll have a better understanding still.
My daughter knows what autism is because she lives with it every day. Every day she teaches me a bit more about it. As a result I can now anticipate some of her needs and support her. Other things still catch me by surprise. My ability to be aware fluctuates with my energy levels. Being aware of autism also means being aware of my own resources to deal with it. There are days when I struggle. There are days when guilt and worry dominate. There are also days when pride and delight in my wonderful, differently-wired child persuade me that life is good after all.
To be honest, I'm not sure whether I'll ever really be completely aware of what autism means. I can't get inside my daughter's life, no matter how hard I try. I can only be aware of what the outside looks like.
But here's the thing: it's not just about awareness. Awareness is just something we say to get you started. It's also about understanding and sometimes that means using your imagination. So I keep trying to imagine what the inside experience of autism is. Even though it's the hardest thing I'll ever have to do, and a lot more daunting than particle physics. Building a Large Hadron Collider from scratch would be easier.
And along the way I find that there's a third phase after awareness and understanding. There's acceptance. I have accepted autism. I have accepted my daughter's differences. It's a process I have to work on every day. Today is just another day, but no less important for that.
So here's to awareness and understanding and acceptance. And to love, which makes it all possible. Happy day, Gracie darling. Thank you for your patience and your understanding of my lack of understanding. I love you.
Piatkus are giving away five copies of my book, Grace Under Pressure: Going the distance as an Asperger's Mum, to celebrate World Autism Awareness Day. To enter the competition, click here
Wednesday, 6 March 2013
And finally, back to the running
Oh, the relief of giving up.
The relief of backing out, hands in the air, and saying: "Nope, not me. Can't do it."
Don't frown. It's seriously underrated.
I am an enthusiastic proponent of the 'try, try again' method. But you have to be strong to keep trying.
This week I am not feeling very strong. In fact I am feeling rather Victorian: a bit swoony and teary and outfaced by modern life. (Oh for a lace handkerchief to flutter and a chaise longue upon which to collapse.)
Yesterday it took me two hours to leave the house for a twenty-minute round trip to the post office. Later, it took me three attempts at parking my car in three different parking spaces before I felt confident enough to actually remove the key from the ignition and get out.
Repeatedly admitting that you're not dealing very well with the stuff that other people do without thinking is embarrassing. The whole try, try again thing actually means: so you failed again. Tough. Keep going.
But you can only keep going so long. And then, I think, you have to stop for a bit.
So here's my new mantra: Try, try again. And then give yourself a break and give up for a while.
So I am giving up for a while. I'm not going to try to do everything. I'm not going to try to be everything to everyone who needs me and berate myself for not being brilliant at it all.
I'm going to narrow everything right down to two daily targets: to get out of bed. And to run.
On Monday for the first time in months, I put on my trainers, laced them up with shaky hands, and ran four miles. Actually, it was more of a jog. And I did it on a treadmill in a gym because I felt a bit scared to go running outdoors. But I ran, and within five minutes of starting I was smiling.
On Tuesday I woke up with a welcome, familiar ache in my legs that made me smile again and offset my fear upon waking. I went to the gym again and ran another two miles.
Today I plan to run again. It won't be very far or very fast, but it will be enough.
I will take it one step at a time, until I feel like trying again.
Who wants to run with me?
The relief of backing out, hands in the air, and saying: "Nope, not me. Can't do it."
Don't frown. It's seriously underrated.
I am an enthusiastic proponent of the 'try, try again' method. But you have to be strong to keep trying.
This week I am not feeling very strong. In fact I am feeling rather Victorian: a bit swoony and teary and outfaced by modern life. (Oh for a lace handkerchief to flutter and a chaise longue upon which to collapse.)
Yesterday it took me two hours to leave the house for a twenty-minute round trip to the post office. Later, it took me three attempts at parking my car in three different parking spaces before I felt confident enough to actually remove the key from the ignition and get out.
Repeatedly admitting that you're not dealing very well with the stuff that other people do without thinking is embarrassing. The whole try, try again thing actually means: so you failed again. Tough. Keep going.
But you can only keep going so long. And then, I think, you have to stop for a bit.
So here's my new mantra: Try, try again. And then give yourself a break and give up for a while.
So I am giving up for a while. I'm not going to try to do everything. I'm not going to try to be everything to everyone who needs me and berate myself for not being brilliant at it all.
I'm going to narrow everything right down to two daily targets: to get out of bed. And to run.
On Monday for the first time in months, I put on my trainers, laced them up with shaky hands, and ran four miles. Actually, it was more of a jog. And I did it on a treadmill in a gym because I felt a bit scared to go running outdoors. But I ran, and within five minutes of starting I was smiling.
On Tuesday I woke up with a welcome, familiar ache in my legs that made me smile again and offset my fear upon waking. I went to the gym again and ran another two miles.
Today I plan to run again. It won't be very far or very fast, but it will be enough.
I will take it one step at a time, until I feel like trying again.
Who wants to run with me?
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