Thursday, 26 March 2015

World Autism Awareness Day is coming around again. Why are you still not listening?

When I sat down to write this year's blog for World Autism Awareness Day, the first thing I did was read last year's, which was about asking the teaching community for better understanding and support.

I could write the same bloody article again today, word for word, so little has changed in the past year.

I won't do that, because I want people to keep reading this year's post.

But from now on I'm not going to be diplomatic any more.

I've spent years trying to understand the point of view of people who refuse to consider mine. I've listened many times to the lecture on how these things take time. And I've discussed at great length and on multiple occasions my own personal responsibilities, and the efforts that my daughter needs to make in order to fit in.

But really, now, I've had enough.

I have had ENOUGH.

Enough of talking to people who aren't listening (even though some of them fake it extremely well.)

Enough of asking for the same things, over and over again.

Enough of being told it's my fault, or her fault, or anyone's fault but theirs.

Talking to these people about Grace and other people with autism, and the support we would really like to have, please, is like speaking into a vacuum and watching my words disappear with a silent 'pop' in an airless, unfriendly atmosphere. It's like yelling for hours into a long dark well without ever hearing the responding echo bounce back to me from the bottom of it.

It's driving me crazy. I don't want to do it any more.

So please, you lot, will you just, please LISTEN.

If I was asking for special consideration I might be able to keep my temper a little better. If I, and all those other parents engaged in these eye-wateringly tedious negotiations, were in fact asking for something to which we knew we had no right, we could maybe just about cope with the daily duel.

But we're not, you see. Our children have the same right to an education as everyone else's.

Our children have the right to be included in your lessons and to be supported and taught, just as every other child does. Our children have the right to expect flexibility and kindness and empathy (even while being constantly criticised by rigid, blinkered "professionals" for being incapable of expressing these attributes themselves.)

Why do our children have this right? Because, um, it's the law.

But if that's not reason enough for you, try this:

Our children are ASSETS ( - are you listening yet?) Our society advances when we embrace the non-conformists and the free thinkers and the eccentrics. Our children have a lot to give. They can learn. Help them to find a way to do this that does not insist they first squeeze themselves to fit a template of 'normal' that you've drawn up to your own specifications and which can only result in their failure.

Stop punishing our children if they become too anxious to cope with your demands. Giving an autistic child detention is not going to magically make them understand how important it is to do what you say. It's only going to make them even more anxious, and likely to get it wrong, again.

Stop telling us our children are 'a handful' or 'difficult' or 'playing up'.

Stop telling us we need parenting classes, when you've not had any autism training or failed to understand the training you undertook. (It's not hard to find autism training, by the way. Here's some, right here, from the National Autistic Society which by the way has pages and pages of the stuff.)

And - especially for the attendance officers this one - stop sending us letters about our children's school attendance. Do you seriously think this is news to us? Don't you think we're killing ourselves every day already to get them there? If you want to know what's going on, talk to your colleagues  - yes those ones on the other side of the staff room, say perhaps the SENCo, or the head of year, or the form teacher, or the teaching assistant - before you send us a postal missive demanding that we explain ourselves to you. We've already done that, to every other bloody member of staff.

I know none of this is terribly polite. I know that I'll get told off for being unhelpful. So fine, tell me off. I'm used to it, and so is my daughter. It makes us feel crappy, but we're used to that too.

But this time, when you've finished telling us off, try thinking about what we're asking for. And consider this too: wouldn't you rather just be getting on with your job instead of arguing with us? We know you're all overworked and underpaid. We know you don't want to spend all this extra time and effort on paperwork and phone calls and this-that-and-the-other. We know you resent playing social worker when you're actually trained to be a teacher.

So fine, teach. It's what you're good at, right?

We'll stick to what we're really, really good at, which is parenting our autistic children.

Then you can stick to what you're good at, which is teaching ALL of the children in front of you.

A tip: our job involves tearing up the rule book and adapting our job to best fit the needs of the children we have. It's an approach you might like to consider in yours.

World Autism Awareness Week starts on Friday, November 27 and runs till Thursday, April 2, which is World Autism Awareness Day, 2015. For more information on ways you can participate, click here.

I will be running the New York Marathon in November 2015 in support of my daughter and Britain's National Autistic Society, which provides information, support and pioneering services for people with autism, and campaigns for a better world for them. If you would like to cheer me on, please click here.

Monday, 16 March 2015

Can you swim a marathon?

I used to be able to complete a mile in 9 and a bit minutes on a good day.

For the last year it has taken me about 40 minutes, and 70 lengths of my local swimming pool.

Most of that time, I've felt as though I was competing in the wrong event. Managing to get along, sure, and even do it quite well a lot of the time. But nonetheless I've always still felt as though I was not really doing the right thing.

Sometimes I watch my daughter and I wonder if she feels the same way. She's a fabulous teenager these days. While many things are much better than they were when I used to write on here about her primary school years, some other things are not better at all. Grace has some wonderful days but she still has very tough ones, when her experience of the world seems to be light years away from everyone else's, and the gap between her understanding and everyone else's causes her pain.

On those days I feel that whatever I'm doing for her is not enough. On those days I ask myself how else I can help. It doesn't seem fair that she goes out to a daily challenge and I don't. It doesn't seem fair.

Lately, I have wondered whether the injury that has been kept me in the pool and away from marathon training and fundraising for so long might need to be tested again.

As I have ploughed up and down the blue-lined box of the swimming pool, constrained by the bobbing orange ropes and the other swimmers in front of me and behind me, I have chafed more and more at the feeling of being hemmed in and thought back to the glorious ten- and fifteen-milers of last spring before my knee popped and I limped over the London Marathon finish line an hour later than I wanted to, and all the running had to stop for a while.

When I hug my daughter and kiss her upset away, I sometimes smell the chlorine on myself and it makes me think again: I am not doing enough. I need to get out of the pool and back into the real world of tough training. Grace's days are hard. Mine, though sometimes I find them so, are really not.

So I've taken the plunge. To get out of the pool, that is.

In November this year I'm going to take part in the New York Marathon for Britain's National Autistic Society (NAS), to raise awareness of autism and support my daughter and many more thousands of people like her, and, I hope, to attract many generous donations so that the NAS can continue to provide information and support and pioneering services. So that together we can campaign for a better world for people with autism.

I'm a bit nervous about this, I confess. I don't know if my injury is healed or just keeping quiet until I really test it. But what's the worst that can happen? Living with autism must, I think, feel a bit like trying to swim a marathon.  Or maybe cycle a swim-athon. Or run a bike challenge.

All I have to do is complete 26.1 miles with a slightly busted knee. It's really not much, by comparison.

If you would like to support Grace and me please click here. I'll be posting more regularly on this blog as I get back into training. Thank you for reading, and for helping us both to keep putting one foot in front of the other. 

Sunday, 25 January 2015

One by one (by one, by one)

There's a small woman hopping up and down on my right shoulder. She looks a bit like me, but for some reason she's speaking with a gorblimey accent. She's leaning forward with an agitated air and saying into my ear: "Don't. 'E's not worth it. Walk away!"

I try to listen to her. I take a deep breath to calm myself. But it doesn't work. So I turn, and stride along the aisle, past eggs and dried fruit, in the direction taken by a young man a couple of moments ago. At the top I look left, only to see him disappear behind swinging doors into a staff-only area. I exhale, and square my shoulders.

"'E's not worth it!" hisses the mini-me again.

But I'm walking over to the door, beside which a senior-looking staff member is ticking things off a list. 

"Excuse me?"

She looks up. Beside us, an industrial-sized rotisserie splats and fizzes, turning rows of browning chickens.


It's been a good weekend, so far. I've seen friends and relaxed and felt enthusiastic about things again. In slightly giddy mood I went to Waitrose and piled my trolley full of rich, tasty food, planning to cook a big meal for my family. I thought: I am nearly well, my loved ones are all well - Grace is calm, happy and productive - January is nearly over. Tick, tick, tick, tick.

Then I turned a corner and two young people, dressed in the supermarket's uniform, came towards me from the opposite direction. The young man -  jaunty walk, shoulders back - was just about to arrive at the punchline of a story that was already making his female colleague giggle. As he walked past I caught the end of his comment: ".. like a special needs one, you know? So you have to look after 'em!" His colleague smothered laughter. They walked on.

But I was stuck. A victim of a walk-by shooting in the bakery aisle. I felt like I'd been splattered against the shelves of finest organic flour. Someone was laughing at my daughter again. I felt sick and sweaty. I felt like I was overreacting. I felt like I wanted to run after that young man and shake him til his teeth rattled.

I looked at all the food in my trolley. I didn't want to eat any of it. Up popped the worried little woman on my shoulder - the one who fears being a spoilsport, a humourless, professional complainer. I batted her away. One by one, I thought. I have to keep tackling them one by one, until there are fewer people who think it's ok to make Grace an object of fun.

Thus, when the senior-looking staff member looks up and says "Yes?" - I say: "I've just overheard a member of your staff make a joke about people with special needs that I found offensive. Do you think I could speak to him?"

The woman blanches, and says very quickly that she will go and get the duty manager.

"It's just - " I begin, - "I have a daughter - "

She stops me and says: "Me too. I'll be right back."

I wait for five minutes. I still feel sick. Then two young men walk up to me. One is the duty manager, who looks very uncomfortable. One is the young man who spoke. His face is a perfect blank. He looks at me, and fixes a bland smile, and clasps his hands together.

"I would like to apologise for my comments," he tells me. "They were taken out of context."

Wait, what? Out of context?

"That doesn't sound like an apology," I retort. "Whatever is going on in your head you should not be voicing it here. Do you have any idea how upsetting it is to be here and shopping and overhear someone making a joke about that?"

Urgh. I am so very un-eloquent.

He smiles blandly at me again, and presses his hands closer together. His expression doesn't change.

"I would like to apologise for my comments," he says again.

Go on then, I think.

There's a pause.

"I have a daughter with autism," I tell him. "And I'm sure I'm not the only person in your shop right now who is living with someone who has special needs. Do you have any idea what my home life is like?"

Double-urgh. Why one earth did I say that? Why can I not explain such an uncomplicated thought. Use your words, I tell myself, as though I am four.

The duty manager is still silent. The other man smiles blandly at me again.

"I would like to apologise for my comments."

Oh, enough.

"Ok then," I say tiredly. "Thank you. Please don't do it again."

I walk away and I don't look back. I think: I don't think I did that very well. I think: That was embarrassing. Then I think of Grace, and I think how glad I was that she wasn't with me, to overhear someone walk past and mock her so blithely.

One by one. It doesn't matter if it doesn't always come out right. It just has to keep being said. Until maybe, at some point, we don't need to say it at all.

Postscript: On Monday Jan. 26 Waitrose contacted me at home after seeing this post, widely circulated on Twitter. A spokeswoman said: "These kind of comments are not expected and not allowed. We will be contacting our learning and development department to comment that this has been happening, so it can be incorporated into future programmes, and a team sent out to reiterate our policies."

Friday, 9 January 2015

How Calamity Jane helped me through depression. (Minus sasparilly.)

I can’t remember the last time I wrote about being depressed. But at the moment there’s a lot that I can’t remember.

I have spent hours, lately, walking around my house looking for things I have forgotten or lost. Normally, I don’t lose things. When I do, it makes me very anxious. It also tends to happen when I’m not well.

Things that I have lost lately include keys, books, phones, letters, various items of food. Information I have forgotten: how to drive to my husband’s office, whether I washed my hair this morning, what the name of this blog was.

Amid the fog, however, there are a small number of things I have not forgotten. Among them are all the words to The Deadwood Stage.

In the evenings I sit down in front of the television. My husband builds me huge leaping fires of coal and wood and I scorch my skin trying to sit close enough to get warm. My youngest daughter turns around and around on my lap like a little dog marking her bed before settling.

Then the screen lights up, with a blast of golden trumpets and technicolour, and we stop fidgeting.

Calamity Jane. It’s such a ridiculous film, so silly and out of date that I am smiling by the first minute and the first line of the first song - which is of course about The Deadwood Stage, careering into town in clouds of dust and flapping curtains, and bearing a bright-faced, curly-haired heroine. 

I love Calamity Jane. I love her for her name – patron saint of those of us who can’t remember anything and keep banging their heads and bruising their elbows in the process of looking – but I also love her because she’s only been on screen for three minutes now and she is literally – literally -- slapping her buckskin-clad thigh while rhyming ‘heading over the hills’ with ‘Injun arrows thicker than porcupine quills’.

Encircled in my arms, five-year-old Betty gives a great shout of delight.

For the next hour and a bit we watch Calamity Jane gallop like mad, shoot anything that moves and sling back "sasparilly". We watch her tell tall stories, make mistakes, fall in love with the wrong man, and match him up with the wrong woman. We watch her try to pretty herself up only to fall in a muddy creek and get laughed at. And we watch her come up smiling – and usually singing -- time after time.

Yes, it’s terribly cheesy. But it’s also funny, mostly on purpose, and it’s a tonic to see this young woman clowning and capering and not caring what people think of her.

When the film has finished and the fire has crumbled to embers and my daughter is asleep in my arms with her cheeks flushed, I think to myself that I must try to care less and laugh more.

The next morning it’s raining and the sky is dark and my first thought on waking is “Oh no” quickly followed by “I can’t.”

But Betty needs to go to school so I get up and get her ready and we leave the house. I have managed to find my keys, which is a good thing, but I am also struggling not to cry, which most definitely is a problem, particularly as we are still only at the garden gate.

Then I hear something. Beside me, Betty is singing a faint tune. As I make out what it is I start to smile. I look over, and my daughter tilts her head back into the rain to see me from underneath the curve of her bee-embroidered umbrella. She reaches out her spare hand.

“Whip crack-away!” she urges, grinning. "Whip crack-away, Mummy!"

Tuesday, 16 September 2014

From across the divide, a sign of hope

Living with a person who says 'No' a lot is hard. It's a life of protracted negotiation without resolution, where things stop before they start. It's a life of knowing any tiny step forward is unlikely and would in any case be followed by ten steps back. It's an existence that requires many deep breaths a day.

It's hard living with a person who greets you in the morning with a No. It's hard living with a person who glares at you when the light is still not fully in the sky and you are still coming around from sleep and figuring out how to feel about the day. It's hard at the other end of the day too when any feelings of satisfaction or lightness about other aspects of your life must be weighed against the No's that have accrued from that person, who always seems to be waiting to shut you down again.

There are big No's that are like a punch in the face. There are slightly smaller but no less insistent No's that are like having a wall built around you. There are tens and hundreds of still smaller No's, on the surface less important, but that still fall like someone has upended a bucket of nails over your head.

It would challenge the sunniest of dispositions. Mine was never particularly sunny to start with.

Yes, I feel sorry for myself - it's an indulgence, I know. But I feel sorrier for the person who says No. It is awful to see that person's unhappiness and anxiousness. It is awful to see how they shut down possibilities and let things go undone so long that the sadness and stress of it is crushing.

I would so dearly love to see this person looser and lighter. I want to see them learn to say 'Yes' and to see the freedom that it brings.

I have joked in the past, a bitter taste in my mouth, that this must be what it's like to live with a sectarian divide. But even Ian Paisley said Yes, in the end.

And yet.

History shows that dark years of misery are still marked by momentous days.

Last week was particularly bad for No's. As a result the weekend, predictably, saw tears and upset when the consequences came around.

Then yesterday - there is no way of writing this but that sounds mundane, though trust me it was not - there was a Yes.

In fact, there were several. One after another, after another, like the sound of bolts sliding open across a long-locked door.

And she smiled, and her heart lifted, and with it so did mine. I know what an effort it is for her to take a path suggested by someone else. I am grateful, and very proud of her.

A day like today is not a day for soundbites, really. But I feel the hand of history on our shoulders. I really do...

Monday, 14 July 2014

School trip

There's no-one else in the pool this morning. The rain has stopped and the morning sky is fine and clear, so the other early swimmers are filing past me to exercise outdoors.

I barely notice them - glimpses of feet in flip flops that appear briefly at my eye level and disappear again as I emerge and submerge, furiously propelling myself down the silent blue lane marked out in orange ropes in front of me. I want to stay indoors. I want to be alone.

This morning my girl departed on the school trip. It's a common enough event at this time of year. I wonder how many other parents are experiencing it right now. From those early spring evenings at the school receiving instructions from calm-voiced teachers, to the rather more urgently phrased summer letters home detailing travel times and required packing; the last week watching your child get progressively excited; the list making. The departing shot: "Don't worry about phoning - but do let me know you're ok!"

Push, dive, kick, breathe.

What must it be like, I think as I swim, to wave off your child with just a flicker of manageable worry - a normal parental twinge? What must it be like to see your child laughing with their friends, shoving excitedly on to the bus in a safe gaggle of chums, then sitting draped over each other, firing jokes back and forth with bright eyes and big grins? What must it be like to go back to your car with just a small tremor of sadness, knowing that by and large your child will be fine, will be happy, will have the time of their life and will come back full of tales of happy gang exploits?

What must it be like, at this event, to be the parent of a child who does not have special needs?

Push, dive, kick, breathe.

I force the air out of me and watch the anxiety-laden bubbles stream past me under water, imagining their acrid pop on the surface. I breathe harder and swim faster til I can feel the muscles taut and burning along my arms and shoulders and thighs and calves. Embedded in the rhythm of my stroke is a silent chant: Please let her be ok. Please let her be ok. Please let her be ok.

I tell myself she will be. She is brave and resourceful. She is glad to be going. She is excited. And the condition that means she will need extra help, that requires extra support and understanding, also has its own defence mechanism: she does not see many of the things I do. She did not see, this morning, how her classmates' eyes slid away as she approached to say hello, how the girls she saluted cheerily exchanged carefully flat glances at one another and replied in non-committal monotones. (I saw, and it was like being rabbit-punched in the throat - a moment of winded, gasping pain which I could not indulge. Instead I smiled brightly at my daughter and the dead-eyed girls edging away from us.)

A bit later I watched her sitting in the coach, a little stiffly, possibly a bit nervous and working her way through the feelings arising from the noise and the excitement in the air around her. I wanted to jump up and down, cross my eyes and stick my tongue out - make her laugh, and relax. I didn't do any of those things of course. She would have been mortified. So instead we looked at each other silently either side of the glass - me smiling from a pavement of chatting milling parents, who all seemed to know each other doubtless from the parties and sleepovers to which my girl is not invited - and her, beautiful and inscrutable, like a Mona Lisa among crowds of holiday pre-teens.

I looked at her and I remembered what she said in the car as we drove here today: "It's okay Mummy, I don't mind who I sit next to because everyone else will be saying 'oh sorry, I'm sitting with someone else'."

The coach driver started the engine. The doors closed. The level of noise inside went up another notch. I put my fingers to my mouth and extended them quickly towards her, hoping to send love rather than embarrassment. And Grace smiled at me finally.

They drove off. I walked to my car, keeping my face as still as possible, and drove to the gym.

We are lucky. My daughter is doing really well at a good school that understands her. Many children with special educational needs wouldn't be able to go on this trip at all. Others might go, and find it much harder than she will. My daughter is lucky. She will enjoy much of this trip.

Push, dive, kick, breathe.

In the water, no-one can tell you are crying.

I will be swimming a mile for autism on Sunday July 20, as part of a nationwide campaign to raise awareness. You don't need to sponsor me - but do join in. It's easy. Simply: 

  1. Do a mile in whatever way you choose - walking, cycling, running etc.
  2. Post your #AMileForAutism photo to Twitter or Facebook on 20 July (not forgetting the all important hashtag!)
  3. Text AMFA14 and either £1£2£5 or £10 to 70070 to make a donation, then encourage friends to join in and do the same.

Click here for more details.

Monday, 23 June 2014

Pond Life

It's 6am on a June morning. The skies are clear blue. A faint, sweet breeze rustles the branches of the trees outside my house. No one else is up. The street is quiet. It promises a lovely summer day.

It's the perfect day for a run.

Instead, I climb into my car and drive to the swimming pool.

When I arrive there is a small queue of regulars waiting at the front door to be let in. They fall into two clear categories: the very old, who wake early and come to glide carefully, like small wise turtles, up and down in the slow lane; and the very fit, who leap out of bed to come and motor up and down in the outside pool - the temperature of which is kept seriously cold, for serious people.

Then there's me. I keep telling myself it doesn't matter that I don't fit, because I'm not a swimmer, I'm a runner and I'm only here for a while.

But it's been two months, and that's starting to feel a bit longer than a while.

It's two months since I limped over the finish line of the London marathon and I haven't run since. I've seen a doctor, a physio, and an osteopath. They all have different opinions about what I might have done to my knee. I don't know what to do with so many different suggestions, so I'm not doing anything at all. That's to say - I'm not running. But I think about running every single day. And every day my knee reminds me, in various squeaks and twangs, and the occasional shooting pain if I'm starting to feel too optimistic, that it's not ready to be tested.

But I'm really bad at sitting around. And I want to be fit for when I can run again. So I'm spending a lot of time in the pool.

I don't like swimming. I've written about this before, so I won't bore you with it again, except to say that compared to running through fields of waving grass - and along tracks of fresh-smelling earth, in the fresh air and glorious, isolated, freedom - the up-and-down of the bob-dip-chlorine-sting while avoiding other people's toes and spit is really not doing it for me.

But I am persevering.

This morning, when the gym manager comes to let us all in, she advises that the indoor pool is closed because the chlorine levels are too high, so it's the outdoor pool only. A mutter goes up. I walk to the changing rooms behind three old ladies with candyfloss hair and velour tracksuits who are each dragging a small bag on wheels stuffed with potions and curlers and other, vital, post-swim kit.

"Why are the chlorine levels so high?" one wonders aloud.

"Someone had An Accident in there yesterday," says another, knowledgeably. "A number two."

The third one tuts. "Children in the pool. What do you expect. Really."

"Oh no," says the second one, mildly. "It wasn't a child. It was an adult."

The first one squeaks, and so do I, but manage to turn it into a light cough in time.

We go into the changing rooms. The ladies turn left. I turn right. I open a locker door, and start to get changed, grumbling to myself about being stuck doing the kind of sport so insanitary that you have to be doused in chemicals in order to protect you from other people's poo. I huff and puff, and brace for a cold dip.

But when I get to the door to the outdoor pool, there's a gaggle of disgruntled Serious Swimmers blocking the way with their broad shoulders and tiny waists and lean sculpted thighs. (What? Oh okay, so this sport does have one thing going for it.) It turns out that the outdoor pool is shut too, because the water levels are too low. There's no swimming at all this morning.

Everyone goes back to the changing rooms. I stand alone for a moment, frustrated - reluctant to pack up and go home but unable to think of an alternative. Then the janitor comes past and says he'll be testing the chlorine level of the indoor pool again in ten minutes and why don't I go to the steam room for a bit and then come back. So I do.

When I re-emerge, pink and blinking, the janitor gives me a cheery thumbs-up. The pool is open and I am the only person there. I rush to it and dive in immediately, suppressing a whoop, and strike out.

By the fifth lap I realise that I am smiling to myself in the way I used to when a run was going really well. By the tenth lap I realise that I didn't think about the last five laps because I was enjoying myself so much. By the twentieth lap I become aware that no part of my body is hurting me, at all, and that this is the first time in weeks and weeks that I have felt so whole and healthy. By the twenty-fifth lap I feel as though I am becoming longer and stronger. By the fiftieth lap, I have abandoned all conscious thought, lost in blissful blue zen.

After seventy laps I stop and surface and shake my head and clean my goggles. Then I do a quick back flip under water in quiet celebration. I haven't felt this good in a long time. I could keep swimming for ever, but a glance at the Olympic clock on the wall tells me I have to go home.

I pull myself out and glance around, and realise that I'm no longer alone. There's a man at the other end of the pool, in the lane beside mine. He isn't swimming, but is squatting in the water so that it comes up to his shoulders and the tip of his luxuriant beard, which I see now that he appears to be grooming.

I suppress a shudder and go for a very hot shower. But I'm already planning when to come back again.

I will be swimming a mile for autism on Sunday July 20, as part of a nationwide campaign to raise awareness. You don't need to sponsor me - but do join in. It's easy. Simply: 
  1. Do a mile in whatever way you choose - walking, cycling, running etc.
  2. Post your #AMileForAutism photo to Twitter or Facebook on 20 July (not forgetting the all important hashtag!)
  3. Text AMFA14 and either £1£2£5 or £10 to 70070 to make a donation, then encourage friends to join in and do the same.

Click here for more details.