God, I'm so sick of looking after other people's hurts.
I'm sick of being the one to smile, and count to ten, and say let's sort this out.
I'm sick of being the one to listen while I'm shouted at, or keep a calmly blank face while others' expressions shrivel with anger or temper. I'm so sick of being the one to patiently maintain eye contact and coax the conversation along while others look away, or avert their gaze to signal displeasure.
I'm sick of doing the conversational equivalent of tugging my forelock, of hovering at my master's elbow, of smiling and bobbing and hoping to please.
I'd like for once, just once, to bellow and stamp and roar, to shout. To clench my fists or narrow my eyes or flounce and storm and say: "Fuck this. What about ME?"
I shouldn't be thinking this. Today, I have to remind myself, is a good day. Today - though you won't believe it after that intro - brought good news. I received the email that told us Grace has a place at the secondary school we have been desperate to get her into. It's the school that has hovered like a vision of Xanadu at the edge of my thoughts for the last two years, throughout the time I've learned how to make nice and fill in forms and attend meetings and cudgel my brain to learn more, to absorb and understand and file away personal hurt that I don't have the time to indulge because I have to stay on track. Today, a nice man who works as Grace's case officer at our local authority - a man to whom, to my shame, I have previously referred on this blog as the Scarlet Pimpernel because he so often seemed to be just out of my reach when I had questions - well, then, this man wrote me an email to say, we've had a letter saying she's got a place so I'm emailing so that you don't have to wait for me to send you a letter.
It was good news. I shouldn't be in such a bad mood. But I am. God, I really am.
I picked Grace up from school today weary after work - though I sprint out at 4pm like a faker I do manage an 8-hour day and a 3-hour round trip commute, smiling and nodding as I squeeze into the carriage alongside sour-faced commuters. My reflection in the tube windows today looked about 74. I blame that loud Sunday night party that our neighbours held til 3am Monday morning, when even the polite couple across the way were throwing up the windows and yelling at them to shut up. I'm 41, it'll take me til Friday to get over the din and the excitement. But as I walked down to the school this evening the thought of telling Grace the news made me smile. I collected her from afterschool club, holding my message inside until we were on our own, as we said goodbye to friends and teachers and collected bag, coat, and the countless daily bits of paper that Grace covers with drawings and doodles and cartoons during her day. We walked to the exit doors, and then suddenly Grace was gone. She was gone because she'd seen a parent and a child that she wanted to avoid. I can't say much more than that because I've been asked not to. Suffice it to know there had been an incident recently in which Grace caused hurt. So once again I went and made nice, which was quite hard because the other party didn't want to make nice. But I persevered. (My shit-eating smile is coming along nicely.) Then I went and coaxed Grace out of the corner in which she was hiding and took her back to the car, where I explained to her again why I'd had to do what I did. Then she shouted and raged and said it wasnt fair. I coaxed and soothed until it passed and ignored the scowls and the cutting eyes.
Then I said to her: Guess what.
She turned to me blankly and said, what.
I said, no you have to guess.
She said, impatiently, I don't know. Am I going to be on TV?
I said, no. Try again.
She pulled her hat over her face in frustration and said, I don't KNOW.
I said: You've got a place.
She paused, then whipped her hat off and turned to me and named the school and said: there?
I said: yes.
And she whooped. A shriek of pure joy. And turned to me with dancing eyes and said, really?
I said: yes.
We laughed.
She said: I love you Mummy. Thank you.
I said: I love you too.
Then we rushed home, ate food, and rushed back to the school for parents' evening, where I made nice some more with another party I can't name for more reasons I can't go into. But then, o joy, Grace's teachers welcomed us with smiles and jokes and sat Grace down beside me and told her what a good term she'd had and how well she done and how pleased they were. They said, you're doing really well. Grace smiled some more. And so did I. And this time it was real.
And here, normally, I'd have the homily. The neat conclusion about what I've learned. But I don't have one of those tonight. Good things happened today, but still, mostly I felt cross and shitty. Grace teaches me vast reserves of patience. It's just that sometimes, I wish other people had more.
Tuesday, 13 November 2012
Thursday, 25 October 2012
Starting over. (Again.)
It's a weekday morning, still black outside. The radiators are just starting to send a shimmer through the cool air that has gathered in my bedroom overnight. The door creaks open and my daughter tiptoes in.
This is Grace, who never gets out of bed before me, who has to be three times awoken every morning, who snarls and groans when the curtains are opened. This is Grace, who pads around to my side and slips into bed beside me and says, I don't want to go to school today Mummy.
We slip together like spoons, huddled under the duvet in the grainy dark, and I put my arm around her and ask what's wrong. She says she has a sore throat, and fakes a cough. I tell her I think she'll be ok. She says she thinks not, that she really doesn't want to go to school. We talk a bit more. I listen and negotiate. I manage to get her out of bed and back into her room to put on her uniform.
Then I go to dress Betty, who pulls her pyjama top off her head with a soft plop and emerges laughing and looking windblown. Standing with her legs planted wide apart she presents me with her velvety round Cupid's belly, and commands me, twinkling, to kiss it. I oblige, inhaling her smell of camomile and milk and peaches. Then I button her into her jeans and pull soft blue socks over her perfect feet, the tiny pearly crescents of her toenails, which she wiggles in pleasure at the cottony yarn.
Then I go into Grace's room. My big girl is standing, undressed and frozen, in the middle of her room. Her eyes are huge and I notice the dark circles underneath them. Slowly, I approach her and dress her with the same tender care as my toddler. I button her shirt, knot her tie, help her with the uncomfortable business of school tights. I comb her hair back and secure it in a neat ponytail. I wipe her face with a flannel. Then, just under her cuffs, I spray a secret squirt of my perfume, a hidden comfort and physical reminder to her that I love her and will see her at the end of her day.
It's not enough, this time. She grabs my waist and starts to cry. Mummy, she sobs, I feel sick, I can't bear the thought of it, I don't want to go. Don't make me go. I make soothing shushing sounds and guide her downstairs, along the hall, to the kitchen table, from where Betty waves merrily at us. I get Grace a bowl and a cup and I pour her breakfast out. She needs to leave for school in ten minutes, if I am to have time to get ready and get to work myself. I keep my voice soft, and tell her she will be ok. Surreptitiously I check my blackberry and watch the clock. I tell her, just go for the morning and if it's still not ok, tell the teacher and I'll come and get you. I think about the work I have to do that day.
Grace eats a little and then stops. It's time to go. She puts on her coat and shoes while I fasten Betty's trainers and zip up her anorak. My husband opens the door and takes my little girl out to the car. In front of the open door Grace turns back to me in panic. She starts to shout and cry, louder and louder. Then she is shrieking and pulling at me. My husband, from the car, raises an eyebrow. I shake my head, and close the door, and hold Grace to me.
Then we go and sit down. Grace has got so big that she barely fits on my knee. She's all elbows and legs. I fold her up and tuck her into me and stroke her back. Then she starts to talk and I listen as she purges herself.
I'm really worried that I've got no friends, Grace says. I don't want to be the bad guy any more, but it's been so long and people are so nasty. The words they use, they make me feel spiky and slimy and I can't help myself and I can't stop the things that come out of my throat. I was so afraid to tell you. Her voice cracks with shame.
She talks on, about the boastful girl she put down, about the friend she doesn't want to have to play with because her games are so boring, about the classmate who whispered something to someone else that might have been about her and made her shout in her face in return, about the boy who she kicked when he baited her. She is mortified. They all hate me, she says. I was too ashamed to go in today.
A little while later I call work and explain that my daughter is ill and that I won't be in today. Then I call the school and make an appointment to take Grace in. We meet, her teacher, the special educational needs co-ordinator and Grace and me, in a little office overlooking the playground. Grace tells us that she thinks everyone hates her. She talks a lot about the last three years of school. Gently, we point out that it's a new year, that she's had seven weeks of term of which at least five have been good. We tell her that one or two bad weeks doesn't mean that everyone hates her. We use words like 'disagreement' and 'argument' instead of 'bullying' and 'teasing.' We suggest that if someone feels differently about things it doesn't mean that they're doing it to express a personal dislike of her. We suggest that Grace try to let go of previous hurts and allow herself to be optimistic. The SENCo is excellent: calm, affectionate and sensible. The headteacher stops by to give Grace a hug and tell her that everything will be ok. By the end of the session Grace ventures a cautious smile.
We drive home, and a song comes on the radio. It's cheesy R&B, the kind of thing I'd normally snap off immediately. But Grace turns it up and starts singing it to me. I listen to the words and smile and I sing it back to her. The words say: "Girl let me love you/And I will love you/Until you learn to love yourself." The windscreen blurs, and I switch on the wipers absently as I sing, until I realise it's my eyes that are blurring.
Grace says she's ready to go to school tomorrow. Tomorrow, we'll all try again.
Grace Under Pressure is published by Piatkus and is available here:
This is Grace, who never gets out of bed before me, who has to be three times awoken every morning, who snarls and groans when the curtains are opened. This is Grace, who pads around to my side and slips into bed beside me and says, I don't want to go to school today Mummy.
We slip together like spoons, huddled under the duvet in the grainy dark, and I put my arm around her and ask what's wrong. She says she has a sore throat, and fakes a cough. I tell her I think she'll be ok. She says she thinks not, that she really doesn't want to go to school. We talk a bit more. I listen and negotiate. I manage to get her out of bed and back into her room to put on her uniform.
Then I go to dress Betty, who pulls her pyjama top off her head with a soft plop and emerges laughing and looking windblown. Standing with her legs planted wide apart she presents me with her velvety round Cupid's belly, and commands me, twinkling, to kiss it. I oblige, inhaling her smell of camomile and milk and peaches. Then I button her into her jeans and pull soft blue socks over her perfect feet, the tiny pearly crescents of her toenails, which she wiggles in pleasure at the cottony yarn.
Then I go into Grace's room. My big girl is standing, undressed and frozen, in the middle of her room. Her eyes are huge and I notice the dark circles underneath them. Slowly, I approach her and dress her with the same tender care as my toddler. I button her shirt, knot her tie, help her with the uncomfortable business of school tights. I comb her hair back and secure it in a neat ponytail. I wipe her face with a flannel. Then, just under her cuffs, I spray a secret squirt of my perfume, a hidden comfort and physical reminder to her that I love her and will see her at the end of her day.
It's not enough, this time. She grabs my waist and starts to cry. Mummy, she sobs, I feel sick, I can't bear the thought of it, I don't want to go. Don't make me go. I make soothing shushing sounds and guide her downstairs, along the hall, to the kitchen table, from where Betty waves merrily at us. I get Grace a bowl and a cup and I pour her breakfast out. She needs to leave for school in ten minutes, if I am to have time to get ready and get to work myself. I keep my voice soft, and tell her she will be ok. Surreptitiously I check my blackberry and watch the clock. I tell her, just go for the morning and if it's still not ok, tell the teacher and I'll come and get you. I think about the work I have to do that day.
Grace eats a little and then stops. It's time to go. She puts on her coat and shoes while I fasten Betty's trainers and zip up her anorak. My husband opens the door and takes my little girl out to the car. In front of the open door Grace turns back to me in panic. She starts to shout and cry, louder and louder. Then she is shrieking and pulling at me. My husband, from the car, raises an eyebrow. I shake my head, and close the door, and hold Grace to me.
Then we go and sit down. Grace has got so big that she barely fits on my knee. She's all elbows and legs. I fold her up and tuck her into me and stroke her back. Then she starts to talk and I listen as she purges herself.
I'm really worried that I've got no friends, Grace says. I don't want to be the bad guy any more, but it's been so long and people are so nasty. The words they use, they make me feel spiky and slimy and I can't help myself and I can't stop the things that come out of my throat. I was so afraid to tell you. Her voice cracks with shame.
She talks on, about the boastful girl she put down, about the friend she doesn't want to have to play with because her games are so boring, about the classmate who whispered something to someone else that might have been about her and made her shout in her face in return, about the boy who she kicked when he baited her. She is mortified. They all hate me, she says. I was too ashamed to go in today.
A little while later I call work and explain that my daughter is ill and that I won't be in today. Then I call the school and make an appointment to take Grace in. We meet, her teacher, the special educational needs co-ordinator and Grace and me, in a little office overlooking the playground. Grace tells us that she thinks everyone hates her. She talks a lot about the last three years of school. Gently, we point out that it's a new year, that she's had seven weeks of term of which at least five have been good. We tell her that one or two bad weeks doesn't mean that everyone hates her. We use words like 'disagreement' and 'argument' instead of 'bullying' and 'teasing.' We suggest that if someone feels differently about things it doesn't mean that they're doing it to express a personal dislike of her. We suggest that Grace try to let go of previous hurts and allow herself to be optimistic. The SENCo is excellent: calm, affectionate and sensible. The headteacher stops by to give Grace a hug and tell her that everything will be ok. By the end of the session Grace ventures a cautious smile.
We drive home, and a song comes on the radio. It's cheesy R&B, the kind of thing I'd normally snap off immediately. But Grace turns it up and starts singing it to me. I listen to the words and smile and I sing it back to her. The words say: "Girl let me love you/And I will love you/Until you learn to love yourself." The windscreen blurs, and I switch on the wipers absently as I sing, until I realise it's my eyes that are blurring.
Grace says she's ready to go to school tomorrow. Tomorrow, we'll all try again.
Grace Under Pressure is published by Piatkus and is available here:
Wednesday, 17 October 2012
It's not an alien life-form, it's Asperger's Syndrome
So once again, Asperger's Syndrome is in the news and the day after the day before, the world's media* seem to be putting all their least-qualified people out there to discuss it.
I can just imagine the phone calls between news editors when the story broke yesterday that Home Secretary Theresa May had blocked the extradition to the United States of Gary McKinnon, a British man with Asperger's Syndrome who hacked into Pentagon computers seeking to prove the existence of aliens, then spent ten years fighting not to be sent to an American prison for life.
The call will have gone up across newsrooms and television studios in the land:
Editor 1:"Quick, we need something on Asperger's Syndrome."
Editor 2: "Let's get X to do it."
Editor 3: "Does he know anything about Asperger's Syndrome?"
Editor 4: "Does it matter?"
pause
Editor 5: "I'll give him a call..."
Maybe I'm being harsh. But how else to explain the absolute blinders we've had today, from Matthew Wright on Channel 5 blithely proclaiming half-way through a phone-in: "I am horribly ignorant about Aspergers" (you didn't think, after yesterday's news, to do a spot of reading last night, Matthew?) to Jeremy Vine gravely intoning in tragic voice at the end of a Radio 2 discussion on Aspergers about "sufferers" of this "cruel syndrome." Eh? My daughter doesn't suffer from a cruel syndrome. She suffers from the lack of understanding and compassion of others. Even the sensible Independent newspaper ran a description of Aspergers which said it "disrupts something that is core to our being human." Pardon me? I don't think my daughter is less than human. But I suppose a discussion of cognitive versus emotional empathy in people with Aspergers would be too much to ask for..
Come on, I hear you say, you didn't really expect the media not to sensationalise this, did you? Especially when McKinnon's Aspergers was clearly presented as the reason not to extradite him. Well, maybe. But I don't believe (and maybe I'm reading this wrongly) that McKinnon's Aspergers was the reason he won his case. I believe he won his case because he was diagnosed with depression and that his diagnosis of Aspergers contributed to this, to his extreme anxiety that being sent to the United States would mean the death sentence for him, which in turn contributed to his depression, which fed the vicious circle in which the poor man has been bound for the last decade, resulting in him becoming extremely vulnerable. Thus the argument that being sent to the United States would contravene his human rights. Incidentally, I think there's also an argument that McKinnon's Aspergers diagnosis backs up his claim to have been looking for extraterrestrials during his hacking adventure, rather than seeking to expose U.S. military secrets. People with Aspergers have obsessive interests which they will follow to the nth degree, often unaware of how it may look to outsiders, and it is easy to understand that McKinnon, intrigued by what he thought was a lead on aliens, would have followed it wherever it went, regardless of big red signs about national security. Though that would have been one for a trial defence, which clearly he doesn't need now. Though interestingly, another British man who has Aspergers, who goes by the name of Syed Talha Ahsan, does need a defence case after he was extradited earlier this month to America on terrorism charges, regardless of a similar psychiatrist report that he was also a suicide risk. Which throws up a whole other series of questions.
But in McKinnon's case there have been two very disappointing conclusions drawn by the media. One is that he "got off" because he is disabled - to whit, he has Aspergers, and is clearly not in his right mind. (There were worrying ripples of this when it was mooted that Norwegian mass killer Anders Breivik might have Aspergers: the overwhelming response seemed to be "oh well that explains it.") The other is that Aspergers defines the individual to the extent that there is no room for anything else. We have seen this happen increasingly as the discussion about autism and Aspergers widens. I am glad the conversation is taking off and relieved to have seen this happen in recent months, but it is tooth-grindingly frustrating in the plod towards greater awareness to have to go through this dense dramatising first, these black and white, unsophisticated pronouncements. "Oyez, Oyez, Asperger people have a VERY SERIOUS ILLNESS and are VERY WEIRD AND DIFFERENT. And, by the way, THEY ARE ALL THE SAME.
No, no, a thousand times no. We are glad, o Gods of the telly and newspapers, that finally you're talking about a condition which is exploding among the global population and which, frankly, you're already way behind on. Rain Man was made in 1988, don't you know. But come on, folks, you've been given a fantastic opportunity here to explore what autism and Aspergers means and judging by today's coverage, you've fluffed it.
People with Aspergers are different, yes. Weird? Well, how do you want to qualify that? They're no more or less weird than the rest of us -- you, who loves Zumba so much you go to classes five times a week, or you, who loves those Star Trek films so much you watch them back to back, or you, who love gardening so much you've filled your entire garden with that particular plant, or you, who have that favourite chair to watch TV in and feel a bit out of sorts when the wife gets it ...
The truth is, autism is a spectrum condition. I think we are all on that spectrum. In the UK it is estimated that 1 in 100 people have autism, so most of us either know or love or look after someone with autism. (If you don't know anyone then maybe, just maybe, it could be you.) People with Aspergers are on that spectrum. Some characteristics of Aspergers are the same. Many, many are very different. Ask a group of parents of children with Aspergers about their experiences and they will all tell you different stories. And different permutations of the diagnosis are coming through. Just as we start to talk more widely about autism, so we have more related behaviours to discuss. PDA: Pathological Demand Avoidance Syndrome, anybody? How about PDD-NOS: Pervasive Developmental Disorder Not Otherwise Specified?
I'd love to come to a neat conclusion for you all here. God dammit, I'd love to come to a neat conclusion for myself here. (It is after all, what I'm trained to do, and the last few years floundering about hasn't been much fun.) But the truth is, there isn't one. I'm no expert in this. I've lived three years with my daughter's diagnosis and in that time I've learned a lot. I've also learned how little I still know. It's an attitude I'd recommend to anyone planning to write or talk about this subject any time soon.
*disclaimer: I work as a journalist. but sadly no-one asked me to write about Asperger's today.
If you would like to help me raise awareness of autism, please click here
If you would like to read our book, please click here
I can just imagine the phone calls between news editors when the story broke yesterday that Home Secretary Theresa May had blocked the extradition to the United States of Gary McKinnon, a British man with Asperger's Syndrome who hacked into Pentagon computers seeking to prove the existence of aliens, then spent ten years fighting not to be sent to an American prison for life.
The call will have gone up across newsrooms and television studios in the land:
Editor 1:"Quick, we need something on Asperger's Syndrome."
Editor 2: "Let's get X to do it."
Editor 3: "Does he know anything about Asperger's Syndrome?"
Editor 4: "Does it matter?"
pause
Editor 5: "I'll give him a call..."
Maybe I'm being harsh. But how else to explain the absolute blinders we've had today, from Matthew Wright on Channel 5 blithely proclaiming half-way through a phone-in: "I am horribly ignorant about Aspergers" (you didn't think, after yesterday's news, to do a spot of reading last night, Matthew?) to Jeremy Vine gravely intoning in tragic voice at the end of a Radio 2 discussion on Aspergers about "sufferers" of this "cruel syndrome." Eh? My daughter doesn't suffer from a cruel syndrome. She suffers from the lack of understanding and compassion of others. Even the sensible Independent newspaper ran a description of Aspergers which said it "disrupts something that is core to our being human." Pardon me? I don't think my daughter is less than human. But I suppose a discussion of cognitive versus emotional empathy in people with Aspergers would be too much to ask for..
Come on, I hear you say, you didn't really expect the media not to sensationalise this, did you? Especially when McKinnon's Aspergers was clearly presented as the reason not to extradite him. Well, maybe. But I don't believe (and maybe I'm reading this wrongly) that McKinnon's Aspergers was the reason he won his case. I believe he won his case because he was diagnosed with depression and that his diagnosis of Aspergers contributed to this, to his extreme anxiety that being sent to the United States would mean the death sentence for him, which in turn contributed to his depression, which fed the vicious circle in which the poor man has been bound for the last decade, resulting in him becoming extremely vulnerable. Thus the argument that being sent to the United States would contravene his human rights. Incidentally, I think there's also an argument that McKinnon's Aspergers diagnosis backs up his claim to have been looking for extraterrestrials during his hacking adventure, rather than seeking to expose U.S. military secrets. People with Aspergers have obsessive interests which they will follow to the nth degree, often unaware of how it may look to outsiders, and it is easy to understand that McKinnon, intrigued by what he thought was a lead on aliens, would have followed it wherever it went, regardless of big red signs about national security. Though that would have been one for a trial defence, which clearly he doesn't need now. Though interestingly, another British man who has Aspergers, who goes by the name of Syed Talha Ahsan, does need a defence case after he was extradited earlier this month to America on terrorism charges, regardless of a similar psychiatrist report that he was also a suicide risk. Which throws up a whole other series of questions.
But in McKinnon's case there have been two very disappointing conclusions drawn by the media. One is that he "got off" because he is disabled - to whit, he has Aspergers, and is clearly not in his right mind. (There were worrying ripples of this when it was mooted that Norwegian mass killer Anders Breivik might have Aspergers: the overwhelming response seemed to be "oh well that explains it.") The other is that Aspergers defines the individual to the extent that there is no room for anything else. We have seen this happen increasingly as the discussion about autism and Aspergers widens. I am glad the conversation is taking off and relieved to have seen this happen in recent months, but it is tooth-grindingly frustrating in the plod towards greater awareness to have to go through this dense dramatising first, these black and white, unsophisticated pronouncements. "Oyez, Oyez, Asperger people have a VERY SERIOUS ILLNESS and are VERY WEIRD AND DIFFERENT. And, by the way, THEY ARE ALL THE SAME.
No, no, a thousand times no. We are glad, o Gods of the telly and newspapers, that finally you're talking about a condition which is exploding among the global population and which, frankly, you're already way behind on. Rain Man was made in 1988, don't you know. But come on, folks, you've been given a fantastic opportunity here to explore what autism and Aspergers means and judging by today's coverage, you've fluffed it.
People with Aspergers are different, yes. Weird? Well, how do you want to qualify that? They're no more or less weird than the rest of us -- you, who loves Zumba so much you go to classes five times a week, or you, who loves those Star Trek films so much you watch them back to back, or you, who love gardening so much you've filled your entire garden with that particular plant, or you, who have that favourite chair to watch TV in and feel a bit out of sorts when the wife gets it ...
The truth is, autism is a spectrum condition. I think we are all on that spectrum. In the UK it is estimated that 1 in 100 people have autism, so most of us either know or love or look after someone with autism. (If you don't know anyone then maybe, just maybe, it could be you.) People with Aspergers are on that spectrum. Some characteristics of Aspergers are the same. Many, many are very different. Ask a group of parents of children with Aspergers about their experiences and they will all tell you different stories. And different permutations of the diagnosis are coming through. Just as we start to talk more widely about autism, so we have more related behaviours to discuss. PDA: Pathological Demand Avoidance Syndrome, anybody? How about PDD-NOS: Pervasive Developmental Disorder Not Otherwise Specified?
I'd love to come to a neat conclusion for you all here. God dammit, I'd love to come to a neat conclusion for myself here. (It is after all, what I'm trained to do, and the last few years floundering about hasn't been much fun.) But the truth is, there isn't one. I'm no expert in this. I've lived three years with my daughter's diagnosis and in that time I've learned a lot. I've also learned how little I still know. It's an attitude I'd recommend to anyone planning to write or talk about this subject any time soon.
*disclaimer: I work as a journalist. but sadly no-one asked me to write about Asperger's today.
If you would like to help me raise awareness of autism, please click here
If you would like to read our book, please click here
Monday, 1 October 2012
Well, we're out there ..
"So when exactly was it, when you felt like killing yourself?" said the journalist at the other end of the phone last week. "And that episode when you're crying in the shower, when was that?"
Hum.
A confession: I was never much one for confessions. A lot of confessional journalism is fabulous, searing, inspirational. Some of it opens eyes and breaks down prejudice. Some of it is self-indulgent.
I never said I wouldn't do it: I just didn't think I'd ever have anything that important to speak up about.
But then my daughter - my precious darling big girl, the grace of my heart and so-named - was diagnosed with Asperger's Syndrome, and our world changed.
I felt lonely and confused. Grace felt lonely and confused. I was angry a lot of the time. So was she. She would come home alight with tension after a day of trying to process a world that couldn't make room for her and I would watch helpless from the sidelines as she went off into another meltdown, fizzing and jittering and shrieking like a Catherine wheel. I felt burdened by a huge responsibility and clueless about how to help.
One thing Grace would say again and again was: "Why doesn't anyone understand?" Then she started to say: "I'm so stupid and useless."
So I thought I would see if I could find a way to help other people understand and in the process make my daughter feel better about herself. By then I was noting down my thoughts daily, in a scrappy journal, in a barely-readable scrawl, as I travelled to work by tube. I thought if I could scribble down all my jumbled, jangled responses to the situation in which Grace and I found ourselves, then somehow a way ahead would reveal itself. Then I thought: why don't I just write it all out and ask other people to read it, and see what they think.
I said to Grace: "I'm thinking of starting a blog, to tell people what it's like to have Asperger's."
She brightened immediately. "Yes!" she said. "I want people to know what it's like. Please will you tell them?"
So I started. Grace read every entry. She talked openly about how she felt and was honest when things were bad, when school went wrong again and friendships failed. Sometimes she would read an entry and ask why I was feeling the way I was. We talked a lot about emotions and she learned along the way. (Contrary to popular opinion, my Aspergers daughter is highly sensitive about how other people are feeling and is agonisingly empathetic. She just struggles to interpret emotions in the moment.) Sometimes I would ask her whether it was ok to write about something particularly painful. There was a lot of stuff I didn't write down.
There were some very tough times. When they came around, I thought I should be honest about them. In so doing I've been told by many other parents of autistic children that it's a relief to see someone telling the brutal truth about the downs. There is so much pressure to be relentlessly optimistic that when the outlook seems bleak it can seem a betrayal to be honest about it.
But this was never meant to be a sob story. My daughter's life is not a tragedy. When I read the doleful medical reports, the diagnosis, the regular assessments, I would think: whose child is this? My Grace sparkles and entrances, and holds any room in the palm of her hand. I wanted to show people that she is not defined by her Aspergers. It is who she is in the same way that she has brown eyes and long, long legs and a delicious expression of mischief that always betrays her ahead of a prank. (I hope she never loses it.)
We've both grown in confidence since I started blogging. Grace has full time help in school now, after our a long battle with the authorities to get a statement of educational needs. These days she comes through the school gates beaming and telling me she's had a great day. She's winning gold stars and trophies. And she's looking forward to going to secondary school. Meanwhile I ran the London Marathon this year, wearing the National Autistic Society's vest and on Sunday I'll run the Royal Parks half-marathon for the second time as part of the NAS team. In the last year I've raised just over £6,000. And I've built up my mental strength as well as my muscles.
I wouldn't quite call it a happy ending - we both know the road ahead is likely to have many more bumps - but life today feels good.
Grace is excited and proud to be in the Guardian and the Times newspapers. When we received the first deliveries of our book, which is published this week, she picked it up and turned it over and over with an expression of wonder. I said to her: "Shall I stop writing the blog now? I think maybe it's time that you had some adventures in private." She turned to me in alarm and said: "No! Please don't. It helps me tell people what it's like."
So for now I'll keep blogging. There is still plenty to say. I think and hope the next year will be more positive. I still have worries about my daughter. I fret about the challenges of adolescence and the next stage of her education. I fret about the lack of official support, from the government's plans for SEN reform, to Michael Gove's plans to change the examination system.
But now I know I have a voice and I hope that I can make a difference. And now I know I can run, and get through the difficulties. And I know that now and always I can take my lead from my daughter, whose courage and dignity and warmth is inspirational.
Gracie, my darling pet, thank you. I love you.
If you would like to support me on Sunday's run, and help me raise awareness of autism, please click here
If you would like to read our book, please click here
Hum.
A confession: I was never much one for confessions. A lot of confessional journalism is fabulous, searing, inspirational. Some of it opens eyes and breaks down prejudice. Some of it is self-indulgent.
I never said I wouldn't do it: I just didn't think I'd ever have anything that important to speak up about.
But then my daughter - my precious darling big girl, the grace of my heart and so-named - was diagnosed with Asperger's Syndrome, and our world changed.
I felt lonely and confused. Grace felt lonely and confused. I was angry a lot of the time. So was she. She would come home alight with tension after a day of trying to process a world that couldn't make room for her and I would watch helpless from the sidelines as she went off into another meltdown, fizzing and jittering and shrieking like a Catherine wheel. I felt burdened by a huge responsibility and clueless about how to help.
One thing Grace would say again and again was: "Why doesn't anyone understand?" Then she started to say: "I'm so stupid and useless."
So I thought I would see if I could find a way to help other people understand and in the process make my daughter feel better about herself. By then I was noting down my thoughts daily, in a scrappy journal, in a barely-readable scrawl, as I travelled to work by tube. I thought if I could scribble down all my jumbled, jangled responses to the situation in which Grace and I found ourselves, then somehow a way ahead would reveal itself. Then I thought: why don't I just write it all out and ask other people to read it, and see what they think.
I said to Grace: "I'm thinking of starting a blog, to tell people what it's like to have Asperger's."
She brightened immediately. "Yes!" she said. "I want people to know what it's like. Please will you tell them?"
So I started. Grace read every entry. She talked openly about how she felt and was honest when things were bad, when school went wrong again and friendships failed. Sometimes she would read an entry and ask why I was feeling the way I was. We talked a lot about emotions and she learned along the way. (Contrary to popular opinion, my Aspergers daughter is highly sensitive about how other people are feeling and is agonisingly empathetic. She just struggles to interpret emotions in the moment.) Sometimes I would ask her whether it was ok to write about something particularly painful. There was a lot of stuff I didn't write down.
There were some very tough times. When they came around, I thought I should be honest about them. In so doing I've been told by many other parents of autistic children that it's a relief to see someone telling the brutal truth about the downs. There is so much pressure to be relentlessly optimistic that when the outlook seems bleak it can seem a betrayal to be honest about it.
But this was never meant to be a sob story. My daughter's life is not a tragedy. When I read the doleful medical reports, the diagnosis, the regular assessments, I would think: whose child is this? My Grace sparkles and entrances, and holds any room in the palm of her hand. I wanted to show people that she is not defined by her Aspergers. It is who she is in the same way that she has brown eyes and long, long legs and a delicious expression of mischief that always betrays her ahead of a prank. (I hope she never loses it.)
We've both grown in confidence since I started blogging. Grace has full time help in school now, after our a long battle with the authorities to get a statement of educational needs. These days she comes through the school gates beaming and telling me she's had a great day. She's winning gold stars and trophies. And she's looking forward to going to secondary school. Meanwhile I ran the London Marathon this year, wearing the National Autistic Society's vest and on Sunday I'll run the Royal Parks half-marathon for the second time as part of the NAS team. In the last year I've raised just over £6,000. And I've built up my mental strength as well as my muscles.
I wouldn't quite call it a happy ending - we both know the road ahead is likely to have many more bumps - but life today feels good.
Grace is excited and proud to be in the Guardian and the Times newspapers. When we received the first deliveries of our book, which is published this week, she picked it up and turned it over and over with an expression of wonder. I said to her: "Shall I stop writing the blog now? I think maybe it's time that you had some adventures in private." She turned to me in alarm and said: "No! Please don't. It helps me tell people what it's like."
So for now I'll keep blogging. There is still plenty to say. I think and hope the next year will be more positive. I still have worries about my daughter. I fret about the challenges of adolescence and the next stage of her education. I fret about the lack of official support, from the government's plans for SEN reform, to Michael Gove's plans to change the examination system.
But now I know I have a voice and I hope that I can make a difference. And now I know I can run, and get through the difficulties. And I know that now and always I can take my lead from my daughter, whose courage and dignity and warmth is inspirational.
Gracie, my darling pet, thank you. I love you.
If you would like to support me on Sunday's run, and help me raise awareness of autism, please click here
If you would like to read our book, please click here
Monday, 24 September 2012
Sometimes you don't need words
I've used thousands of words in this blog.
Some days they have rushed out of me in a storm of rage. Other days they have swirled and bobbed like boats on the current of my thoughts. Some days they trickled as I cried. At other times they fell haphazardly as I struggled to make sense of the latest event to occur. There have been long gaps when no words would come to me at all.
Today I am full of words - fizzing and buzzing and quivering with them. But none of them could possibly do justice to how I feel. So I think actually this time I'm not going to use very many.
Today is the start of Grace's third week of the new school term: her first term since we got her statement of educational needs. In the two and a bit weeks since the new academic year started she has had her own learning assistant by her side in class and in the playground. When I pick her up these days she smiles at me and says: "Mummy, I had a great day."
My daughter has Asperger's Syndrome, with a side-order of ADHD and dyscalculia. My daughter also has a gift for drawing, for words and for music. For a long time these aspects of her life sat in parallel. We struggled to see a way ahead in which she could learn the things she did not know, and hone the skills that make her unique. School was a battleground and a misery.
But today, Grace brought a trophy home. She was awarded it in recognition of her achievements in maths in particular. Those who know the agonising murk of dyscalculia will realise how much this means. For everyone else: I could use hundreds of words to tell you how much this means. But for today, I'll just show you.
I always knew my daughter was a star. Today, she knows it too.
To help me raise awareness of autism and support the work of the National Autistic Society, click here
To read more about our story, click here
Some days they have rushed out of me in a storm of rage. Other days they have swirled and bobbed like boats on the current of my thoughts. Some days they trickled as I cried. At other times they fell haphazardly as I struggled to make sense of the latest event to occur. There have been long gaps when no words would come to me at all.
Today I am full of words - fizzing and buzzing and quivering with them. But none of them could possibly do justice to how I feel. So I think actually this time I'm not going to use very many.
Today is the start of Grace's third week of the new school term: her first term since we got her statement of educational needs. In the two and a bit weeks since the new academic year started she has had her own learning assistant by her side in class and in the playground. When I pick her up these days she smiles at me and says: "Mummy, I had a great day."
My daughter has Asperger's Syndrome, with a side-order of ADHD and dyscalculia. My daughter also has a gift for drawing, for words and for music. For a long time these aspects of her life sat in parallel. We struggled to see a way ahead in which she could learn the things she did not know, and hone the skills that make her unique. School was a battleground and a misery.
But today, Grace brought a trophy home. She was awarded it in recognition of her achievements in maths in particular. Those who know the agonising murk of dyscalculia will realise how much this means. For everyone else: I could use hundreds of words to tell you how much this means. But for today, I'll just show you.
I always knew my daughter was a star. Today, she knows it too.
To help me raise awareness of autism and support the work of the National Autistic Society, click here
To read more about our story, click here
Tuesday, 18 September 2012
Gove's school reforms are a disaster for my girl
I am reading in the newspaper about the government's plans to scrap GCSE exams and an appalled sick feeling is rising within me.
It's a very familiar feeling. It's one I have lived with for the last few years as my daughter navigated the school system. It's a feeling I hoped had been vanquished by our success in finally getting her the extra help she needed. But by the time I get to the end of the article I am shaking with dismay and anger. A huge injustice has just been done to my daughter. The sickness is well and truly back.
The government has decided that coursework is out and cramming is in. Instead of GCSEs we are to have an English baccalaureate, with the emphasis on end-of-term exams, to end "dumbing down", says the education secretary Michael Gove. The new system, he says, will prepare young people for a world of university or work and give employers confidence in students' abilities.
I have spent every waking hour for the last two years fighting for my daughter to have the support she needs in order to be able to learn, so that aged 18 she can go out into the world and make her own way as a productive member of society with the best qualifications she can acquire. After two years of meetings and letters and late nights and stress and tears and panel hearings and paperwork, the local council granted us a statement of educational needs that gave us the resources to allow my daughter to learn in a mainstream school, alongside the rest of her class, a teaching assistant by her side.
Now, just like that, after that endless, endless effort, the government has disenfranchised her again.
She is clever, my girl. She loves words and art and history and is curious about the world. She also has Asperger's Syndrome, which means that she struggles with abstract concepts. She also struggles to concentrate on anything that doesn't fit with her colourful but narrow circle of interests. Timed tests are a torture for her: she panics and flaps and tells herself she is stupid and works herself into such a state that her mind goes blank. By contrast, the long-term projects she produces are things of beauty and learning. She enjoys them and immerses herself calmly in the subject. She learns, and remembers.
When I think of her having to prepare for the kind of mammoth, end-of-term exams that I did, my blood runs cold.
My abiding memory of preparing for exams at school is pacing. Back and forth, in my bedroom, chanting facts and quotes, checking and re-checking my revision notes, stuffing myself to bursting point with scholarly nutrition in order to regurgitate it all on paper in the pursuit of straight 'A's.
I was lucky: most of it I understood. A lot of it I really loved. Some of it I barely comprehended but knew which bits I needed to look like I knew.
I was also lucky because I was not fazed by the knowledge that I had precisely three hours to demonstrate my brilliance: three hours of fast, neatly clever calm condensing.
I was not a child with special educational needs.
Gove's new system puts me in mind of Mr Feeder's school in Charles Dicken's Dombey and Son, where pupils are ground down by a primitive system of education that simply forces facts into them. In one classroom scene, "two, who grasped their foreheads convulsively, were engaged in solving mathematical problems; one with his face like a dirty window from much crying, was endeavouring to flounder through a hopeless number of lines before dinner; and one sat looking at his task in stony stupefaction and despair - which it seemed had been his condition ever since breakfast time." Hour after hour, Dickens writes, "the studies went round like a mighty wheel, and the young gentlemen were always stretched upon it."
Gove would doubtless tut at my comparison. He has already chastised me and parents like me for our negative response to his plan. "Some will argue that more rigorous qualifications...will inevitably lead to more students failing. But we believe that fatalism is indicative of a dated mind-set; one that believes in a distribution of abilities so fixed that great teaching can do little to change them," he said. Where schools believe that children will struggle with the test, they can defer them until they are 17 or 18, presumably to stuff more of that great teaching inside them.
There's just one problem with this, Mr Gove. I'm sure great teaching can help my daughter to learn huge amounts, Mr Gove. But we're not talking about the teaching, are we? We're talking about the examination process. And regardless of how great the teaching, my daughter will fail if she has to undergo this process. And we can't defer until she's ready to take your test. My daughter will still have Aspergers when she's 17. She'll still be autistic when she's 18. And if this plan goes ahead, she will have been roundly failed by you when she's 19.
It's a very familiar feeling. It's one I have lived with for the last few years as my daughter navigated the school system. It's a feeling I hoped had been vanquished by our success in finally getting her the extra help she needed. But by the time I get to the end of the article I am shaking with dismay and anger. A huge injustice has just been done to my daughter. The sickness is well and truly back.
The government has decided that coursework is out and cramming is in. Instead of GCSEs we are to have an English baccalaureate, with the emphasis on end-of-term exams, to end "dumbing down", says the education secretary Michael Gove. The new system, he says, will prepare young people for a world of university or work and give employers confidence in students' abilities.
I have spent every waking hour for the last two years fighting for my daughter to have the support she needs in order to be able to learn, so that aged 18 she can go out into the world and make her own way as a productive member of society with the best qualifications she can acquire. After two years of meetings and letters and late nights and stress and tears and panel hearings and paperwork, the local council granted us a statement of educational needs that gave us the resources to allow my daughter to learn in a mainstream school, alongside the rest of her class, a teaching assistant by her side.
Now, just like that, after that endless, endless effort, the government has disenfranchised her again.
She is clever, my girl. She loves words and art and history and is curious about the world. She also has Asperger's Syndrome, which means that she struggles with abstract concepts. She also struggles to concentrate on anything that doesn't fit with her colourful but narrow circle of interests. Timed tests are a torture for her: she panics and flaps and tells herself she is stupid and works herself into such a state that her mind goes blank. By contrast, the long-term projects she produces are things of beauty and learning. She enjoys them and immerses herself calmly in the subject. She learns, and remembers.
When I think of her having to prepare for the kind of mammoth, end-of-term exams that I did, my blood runs cold.
My abiding memory of preparing for exams at school is pacing. Back and forth, in my bedroom, chanting facts and quotes, checking and re-checking my revision notes, stuffing myself to bursting point with scholarly nutrition in order to regurgitate it all on paper in the pursuit of straight 'A's.
I was lucky: most of it I understood. A lot of it I really loved. Some of it I barely comprehended but knew which bits I needed to look like I knew.
I was also lucky because I was not fazed by the knowledge that I had precisely three hours to demonstrate my brilliance: three hours of fast, neatly clever calm condensing.
I was not a child with special educational needs.
Gove's new system puts me in mind of Mr Feeder's school in Charles Dicken's Dombey and Son, where pupils are ground down by a primitive system of education that simply forces facts into them. In one classroom scene, "two, who grasped their foreheads convulsively, were engaged in solving mathematical problems; one with his face like a dirty window from much crying, was endeavouring to flounder through a hopeless number of lines before dinner; and one sat looking at his task in stony stupefaction and despair - which it seemed had been his condition ever since breakfast time." Hour after hour, Dickens writes, "the studies went round like a mighty wheel, and the young gentlemen were always stretched upon it."
Gove would doubtless tut at my comparison. He has already chastised me and parents like me for our negative response to his plan. "Some will argue that more rigorous qualifications...will inevitably lead to more students failing. But we believe that fatalism is indicative of a dated mind-set; one that believes in a distribution of abilities so fixed that great teaching can do little to change them," he said. Where schools believe that children will struggle with the test, they can defer them until they are 17 or 18, presumably to stuff more of that great teaching inside them.
There's just one problem with this, Mr Gove. I'm sure great teaching can help my daughter to learn huge amounts, Mr Gove. But we're not talking about the teaching, are we? We're talking about the examination process. And regardless of how great the teaching, my daughter will fail if she has to undergo this process. And we can't defer until she's ready to take your test. My daughter will still have Aspergers when she's 17. She'll still be autistic when she's 18. And if this plan goes ahead, she will have been roundly failed by you when she's 19.
Tuesday, 11 September 2012
On falling down a hole, and having a World Wide Weep
I've not been running for ages.
I was running, and then I fell down a hole. It's hard to run when you're down a hole. It's hard to do anything when you're down a hole. Generally speaking, no-one likes to be down a hole. (My baby girl, recently told the nursery rhyme of the old man who fell off his horse into a ditch, looked at me with alarm and said: "I don't like ditches. He should have gone on his scooter instead. On the pavement.")
Would that I was in a ditch, shallow enough to clamber out. The hole I'm in has high walls and no hand-holds. Sometimes I look up and see stars glimmer late at night. Much of the time it's just black.
My comfort, threadbare and patched thing that it is, is that other people know this hole too. To some of them it's not a hole, but a black dog that follows them around and haunts their footsteps. Others just call it more bluntly: depression.
Here are some of the things you pick up fast when you're depressed, or prone to regular bouts of depression: don't drink or smoke (it makes the hole deeper and darker), do long, tiring physical exercise (pushing your body makes your mind go quiet - just so long as you can get out of the front door), do learn how to smile when you don't feel like it (but be aware that often when you think you're smiling you're just looking grim and weird and making people worried.) Send texts to friends and family instead of phoning or taking phone calls so you don't have to fake a smiley voice too. Know that getting out of bed some days is a victory; that on other days staying there is the only course of action.
Oh, listen to me go on. Oversharing for the common good, or just having a World Wide Weep? A nagging doubt while I'm down in this hole is that I'm just being a bit pathetic. As Leonard Cohen said (you get to know the big names down here: the godfathers and godmothers of gloom who felt it all before you) "The term clinical depression finds its way into too many conversations these days. One has a sense that a catastrophe has occurred in the psychic landscape." So is this just a modern-day malaise? As I sit here, in my family home, amid my family comforts, with the late Indian summer sun shining and the photographs of those I love and who love me looking down on me, as I sit here thinking "poor, poor me" - should I just tell myself how lucky I am to have the time to think and worry?
I don't feel lucky. I feel like I've had flu for weeks: an illness that initially generated concern and legitimate reason to take it easy but that now is just getting really boring. I'm bored of crying randomly at weird triggers (folding my children's clothes, unable to find something I need on a supermarket shelf. Anyone?) I'm bored of feeling utterly outfaced by the smallest tasks: reduced to frozen confusion by the decision whether to do the washing-up or the ironing first. I'm bored of the constant, sick fear that something is badly wrong. I'm bored of being so boring and self-obsessed: I agonise and I fear I antagonise, even as my ever-patient family nod kindly and hug me.
I need to get out of this hole. I need to get out of the house. I need to get out of the house and run. I need to run with no music and listen to my body instead of the mutterings of my mind. But I'm apprehensive about leaving the house. These days every sortie is accompanied by twisting nausea in my stomach. Even on the school run, a drive of ten minutes in total, I have to grip the steering wheel tightly to suppress the tremble in my hands. (Having the shakes is a new phenomenon this time around. I'm hoping it doesn't stick.)
But this is not a sob story. (Oh - funny! Hoho. I mean: it's just how it is, this story about sobbing.)
So I need to go and find my running shoes.
I might even put them on.
If you would like to help me raise funds and awareness of autism, click here:
If you would like to read more about our story, click here:
I was running, and then I fell down a hole. It's hard to run when you're down a hole. It's hard to do anything when you're down a hole. Generally speaking, no-one likes to be down a hole. (My baby girl, recently told the nursery rhyme of the old man who fell off his horse into a ditch, looked at me with alarm and said: "I don't like ditches. He should have gone on his scooter instead. On the pavement.")
Would that I was in a ditch, shallow enough to clamber out. The hole I'm in has high walls and no hand-holds. Sometimes I look up and see stars glimmer late at night. Much of the time it's just black.
My comfort, threadbare and patched thing that it is, is that other people know this hole too. To some of them it's not a hole, but a black dog that follows them around and haunts their footsteps. Others just call it more bluntly: depression.
Here are some of the things you pick up fast when you're depressed, or prone to regular bouts of depression: don't drink or smoke (it makes the hole deeper and darker), do long, tiring physical exercise (pushing your body makes your mind go quiet - just so long as you can get out of the front door), do learn how to smile when you don't feel like it (but be aware that often when you think you're smiling you're just looking grim and weird and making people worried.) Send texts to friends and family instead of phoning or taking phone calls so you don't have to fake a smiley voice too. Know that getting out of bed some days is a victory; that on other days staying there is the only course of action.
Oh, listen to me go on. Oversharing for the common good, or just having a World Wide Weep? A nagging doubt while I'm down in this hole is that I'm just being a bit pathetic. As Leonard Cohen said (you get to know the big names down here: the godfathers and godmothers of gloom who felt it all before you) "The term clinical depression finds its way into too many conversations these days. One has a sense that a catastrophe has occurred in the psychic landscape." So is this just a modern-day malaise? As I sit here, in my family home, amid my family comforts, with the late Indian summer sun shining and the photographs of those I love and who love me looking down on me, as I sit here thinking "poor, poor me" - should I just tell myself how lucky I am to have the time to think and worry?
I don't feel lucky. I feel like I've had flu for weeks: an illness that initially generated concern and legitimate reason to take it easy but that now is just getting really boring. I'm bored of crying randomly at weird triggers (folding my children's clothes, unable to find something I need on a supermarket shelf. Anyone?) I'm bored of feeling utterly outfaced by the smallest tasks: reduced to frozen confusion by the decision whether to do the washing-up or the ironing first. I'm bored of the constant, sick fear that something is badly wrong. I'm bored of being so boring and self-obsessed: I agonise and I fear I antagonise, even as my ever-patient family nod kindly and hug me.
I need to get out of this hole. I need to get out of the house. I need to get out of the house and run. I need to run with no music and listen to my body instead of the mutterings of my mind. But I'm apprehensive about leaving the house. These days every sortie is accompanied by twisting nausea in my stomach. Even on the school run, a drive of ten minutes in total, I have to grip the steering wheel tightly to suppress the tremble in my hands. (Having the shakes is a new phenomenon this time around. I'm hoping it doesn't stick.)
But this is not a sob story. (Oh - funny! Hoho. I mean: it's just how it is, this story about sobbing.)
So I need to go and find my running shoes.
I might even put them on.
If you would like to help me raise funds and awareness of autism, click here:
If you would like to read more about our story, click here:
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