Monday, 14 April 2014

Don't give up. Ever.



Thank you to everyone who supported me: family, friends, Twitter followers and Facebook chums; fellow runners and complete strangers; everyone who urged me to keep putting one foot in front of the other; who sent love and gave me the certainty that I could do it because they believed I could.

Together we have raised a huge amount of money for a wonderful charity that helps children with autism thrive and achieve. And we have shown one girl, again, that we stand with her, and will  keep going with her, even under pressure.

Monday, 7 April 2014

Doom

I'm sitting in the doctor's examination room with my trousers off. Her neat, careful fingers are probing the soft area around my kneecap.

I watch her, and think: "Please tell me what to do."

She straightens up and says: "Well, I can't tell you what to do."

Then she says: "I don't think you'll be able to make it round."

Then she sees the look on my face and says: "You could start it, and just do a bit."

Then she looks at me again and says: "Or you could walk it."

I am struggling not to cry. I am struggling to replace my 'oh fuck' face with something blander and more grown-up. I can tell by the way my GP is looking at me that I am failing miserably.

For the last fourteen weeks I have thought of nothing but running this marathon. For the last three weeks I have thought about nothing but whether I can run this marathon after all. I have obsessed, every moment of every day, about how much my knee or my back is hurting me and what this means for my prospects of running.

My injuries have taken it in turns to torment me. For days, nothing. Then - a dull, nagging throb. Then - bam, a zinging trail of pain all the way up the side of my leg, or across my back. For a while, I couldn't figure out which was worse. Right now, my back is quiet while my knee, sparking and pulsing, makes stairs and hills an uncomfortable forecast of what awaits if I attempt to put it through 26.2 miles in six day's time.

Six days. I've trained for 14 weeks and now with six days to go I have to go right back to the start and figure out whether I'm going to do this.

I ask my doctor: "What about a steroid injection? What about really strong painkillers and sports tape? Can you give me enough stuff just to make it around, and then I'll rest it?"

She looks at me, a wrinkle of doubt in her nose.

"I can give you very strong anti-inflammatories that will help. I can give you very strong painkillers that will stop the pain. The thing is, if we do that and you run on it, then you won't know how much you'll be damaging it. You might find that you can't run on it again afterwards."

I gape. "What - ever?"

"Well.. for some time," she answers.

I think about not running the marathon, and I feel sick.

I think about starting the marathon and running a few miles and having to abandon it, and I feel sick.

I think about starting the marathon and running a few miles and then walking the rest, for hours and hours, past all the crowds of people cheering and yelling everyone on, and feeling such a fraud and a loser, and I feel sick. I think about limping down Birdcage Walk seven hours after the start of the race, to see the crowds have melted away, and the litter blowing in the breeze, and I feel sick.

I take the prescription from my doctor and I walk home. As I walk I think about the huge amount of money that my friends and family have pledged for me, have promised in support of a wonderful charity, Ambitious about Autism. I think about the work they do, and I think about the amazing school they run. I think about the day I visited, as a new patron, and watched a little girl - outnumbered as ever by the number of boys with autism - in her class, quietly bending to a task with a smile as her worker sat beside her. I think about my own daughter, who doesn't get to decide that she can't have autism today, sorry. I walk and I think and I think.

By the time I get home I've decided.

I've got a place in one of the biggest and best races in the world. And I've got a vest that says I'm part of a team of people who are ambitious about making things better for children who have autism.

I'm going to start the race. I'm going to pass over the start line to say thank you to everyone who sponsored me, and to say, to my daughter, I'm with you. And then - we'll see what happens. Maybe luck will be on my side and I'll make it to the finish line. Maybe I'll have to go home after three miles. Either way, I'll have been part of it, in some way. It's enough.





My new training plan.


To support me, and support Ambitious about Autism's aim to help children with autism learn, thrive and achieve, please click here

Wednesday, 2 April 2014

On World Autism Awareness Day, an invitation to the teaching community

Right now, in many countries, lots of young girls are getting ready - with great reluctance - for school. They are getting dressed and brushing their hair, while their stomach knots with apprehension. They are fastening shut their schoolbags and putting on their blazers. They are moving very slowly, putting off for as long as they can the moment when they have to leave.

Later, when they come back, their parents will ask how their day at school went. Some of these girls will say nothing. Some will say something. Some will shout. Some will throw things, or hit someone.

Many of them will go quickly to their bedrooms, to a safe place. And there, when they are alone, one or some of the following things will happen. They will cry. They will make themselves sick. They will cut or harm themselves, until they bleed and feel better. They will do these things again and again.

The parents may know. They may not know. They may find out now, or they may find out later. When they find out, they will most likely go to the school. They will likely say: "Please can you help us. Our daughter finds school very hard. She has autism."

They might add, by way of explanation: "The stress of the social environment - the noise and the scrutiny and the rules - along with worry about grades/friendships/bullying/ is making her ill."

When this happens, here's what the school will say:

"We are very sorry to hear that. Let us work together to get your daughter the support she needs."

Actually, that's not true. Or at least it's so rarely true that it's not the story I'm going to tell here. Here's what the school - the headteacher, the teacher, the head of year, the special educational needs co-ordinator - more often say instead (and these are all examples of what they have actually said to some of the many parents of girls with autism that I talk to):

"Well, she's fine in school, so it must be a problem at home."

"She needs to be less sensitive/get a thicker skin/toughen up a bit."

"She needs to learn to shut out distractions."

"She brings it (the bullying/the stress/the tears) on herself."

"It's better that she doesn't tell anyone she has Asperger's Syndrome. It will only make things worse."

"There's no point applying for a statement of educational needs/extra teaching support because she won't get it. She's fine in school, you see .."

This time last year, on World Autism Awareness Day, I wrote this blog about the process I had undergone, following my daughter's diagnosis, of learning to understand and be fully aware of autism.

This year, on World Autism Awareness Day, I would like to extend an invitation to the teaching community to do the same.

Teachers, particularly in Britain, are under a lot of pressure. Bureaucracy and paperwork and targets and endless new demands, combined with cuts to pensions and salaries, and the morale-sapping decline of respect for their work, are causing droves of teachers to leave the profession. Many of those who stay are wondering how much longer they can stick it out for.

But.

Teachers have a responsibility to understand the children they are teaching, even if just a little. They have a responsibility to promote tolerance and acceptance of difference. Pastoral care is not a 'nice to have' when it comes to teaching.

If you are a teacher you should know that autism rates are rising. The latest report on this, from America's Center for Disease Control and Prevention just last week, says that 1 in 68 children now have autism. That's a 30 percent jump in two years. It's not because vast numbers of children suddenly 'got' autism overnight, though there is certainly something happening to increase the incidence of autism worldwide. In part, these new numbers are because doctors are getting better and better at spotting autism, and diagnosing it.

If doctors are starting to understand and to see autism, shouldn't teachers?

My daughter goes to a great school with excellent support. We are very lucky. I know some fantastic teachers. One is my clever, sensitive sister, who recognised some of the symptoms of autism in my daughter while I was still a long way from understanding.

But there are unfortunately a lot of teachers out there who are not fantastic. There are a lot of teachers out there who do not know much about autism, and have no interest in finding out more. There are a lot of teachers who think autism is something that happens to other children, not the children who come to their school. Not the children they teach.

Let's change this. It's not that difficult. It doesn't require new tests, or benchmarks, or quotas. It just means reading a few things - like this, perhaps. It means applying empathy - yes, that thing that autistic children are supposed to be so short of. (If my daughter saw someone upset or in trouble at school it would never, ever occur to her to think that they must somehow have brought it upon themselves.)

It means making the job of SENCo - special educational needs co-ordinator, as they are called in Britain - and its equivalent elsewhere, into a job that is valued and important, and done properly, rather that the thing that someone does one day a week, or the role that gets given to the teacher who's killing time before retirement, or the job that gets given to the teacher who's not very good at anything else but is too hard to fire.

All of the examples I gave at the beginning of this article were about girls for a reason. I'm not suggesting for a moment that boys with autism don't suffer at school too. But I don't have a son with autism. I have a daughter, and from what I see and hear from other parents of daughters, our daughters are suffering. They are suffering particularly hard. When teachers don't understand autism, they particularly don't understand girls with autism. They don't understand that girls are more likely to hide their autism, to copy their peers, to camouflage and keep quiet while they suffer. They don't understand that girls with autism are suffering serious mental health issues because of the strain of being taught by people who have no idea of what their lives are like or who they really are.

I don't claim this as the most important battle in understanding autism. But it is one we must fight.

And yet - it doesn't have to be a battle. We are the parents who are interested in our children. We are the parents who appreciate the importance of our childrens' educators, and the difference that they can make to their lives. Invite us to our children's schools, and we will come. Ask us to contribute to our children's teachers' efforts and we will. We already are. We have enough battles to fight already. So, by God, do teachers.

Awareness of autism starts with understanding how much we still don't understand about it, in order to learn what kind of support to give to those who need it. It's ok to say you don't know very much about autism, or how it can look different in boys and girls. Here's your chance to change that. Can we talk?





To find out more about autism and World Autism Awareness Day, click here

To find out more about how you can help children and young people with autism thrive and achieve, click here

Want to make a difference? Support me on April 13 and your money will go directly towards helping improve services for children with autism and spreading understanding and awareness of the condition.

Grace under Pressure: Going the distance as an Asperger's Mum, is published by Piatkus and available here


Monday, 17 March 2014

Demolition Derby

It's the last four weeks of my training.

I am averaging more than 25 miles a week, sprinting and lunging and popping push-ups and running for upwards of three hours every Saturday morning.

It's been 12 weeks since I started preparing for the London Marathon 2014. The rain has eased. The mornings are bright. The evenings, though still dark, are less cold.

The anticipation is building.

I should be feeling like an athlete, toned and ready.

Instead I am knackered, and sore.

I don't feel like an athlete. I feel like an old car, being driven at faster and faster speeds until everything is vibrating, and nuts and bolts loosen and ping off. Any minute now the windscreen wipers will start to flip crazily of their own accord.

I so hoped this time my final preparations would be happy. The signs were good - the easy 14-mile run that was an almost religious experience; the 5k sprint I did in 26 minutes.  I thought that this time I'd cracked it - the training, not my poor old bones. I thought I would fly through my last training runs of 17, 18 and 20 miles.

I did not think I would not be repeating my experience of 2012 when I spent the last four weeks pre-marathon mostly on the osteopath's table.

This afternoon, I'm off to the osteopath's table.

Saturday's run started off so well. I succeeded in getting nearly accidentally-on-purpose lost, essential when undertaking runs of this length. Doing laps for 180 minutes would test my sanity more than my legs. However, getting totally lost would risk running up some rotten hills, given my local geography. I have to find a happy medium of nearly not knowing where I am - sufficiently distracted by my surroundings to clock up the miles enjoyably, while still able to run home via routes somewhere close to sea level.

The first hour was fine. The next five minutes was fine. The next five minutes revealed a niggle. The five minutes after that involved a lot of pain. The shock of it was followed by plummeting despair. I kept running, but headed for home. I paused my stopwatch, and stood in the hallway, trying not to cry and wondering what to do.

"I don't know what to do," I said to my husband, and started crying.

"What do you want to do?" he asked me carefully.

I knew what I wanted to do. I turned around, and went back out, and started running again.

The pain felt familiar. It felt like the pain from last time. It started in the right side of my lower back, then probed into my hip and groin and progressed remorselessly down into the side of my knee.

I ate energy bars and wiped tears away and kept going. I turned on my ipod. I turned it up loud. For a short while, I managed to push the pain into the background. I got to a very doggy bit of the local park and was distracted as ever by dodging the terriers. This time, it helped.

Amazingly, and wonderfully, I got a second wind at 13 miles, when I realised that I'd matched my second-best half-marathon time. This is not a fast time. Don't get excited. But I got excited, and that helped too, for a while.

Fifteen miles was grim. Sixteen miles was grimmer. During the seventeenth mile the pain was like sparks inside my head.

I finished, and walked home on legs that felt like glass. I went on Facebook and made a joke of how bad it had been. Then I sat in the bath, and wondered what to do next.

This afternoon, I find out what to do next. My osteo appointment is in a couple of hours. I still hurt.

In the meantime, I'm watching my Twitter feed - full of fast, hearty runners whooping with joy at doing 20 miles faster than last week. I feel like Ebeneezer Scrooge. Where are the people who had a crap run? Where are the people who hated every minute of the last hour and could barely make it up the stairs afterwards? Surely I can't be alone?

Don't get me wrong. I'm not sad not to be fast. I have always been a plodder - out and proud. My marathons are as much about raising money as raising mileage. I ran my last (first) London Marathon for my daughter, who has Asperger's Syndrome, and for the wonderful National Autistic Society, who supported us throughout the long, painful process of diagnosis and finding support. I thought I should run another one for other people's daughters, and sons, who have autism, and need more support than they're getting. My ambition in running this marathon this time is to raise squillions (or at least several thousands) for Ambitious About Autism, which believes children with autism should thrive, and achieve.

I won't ever clock a time under four and a half hours, and I'm ok with that. I salute all of you who run like whippets. Of course I'm envious. But I'm also realistic.

It's just that I hoped this time wouldn't hurt quite so much.

While I wait for my appointment I'm taking painkillers. But I've realised that the best anaesthetic is this one, right here. It's what ensures that whatever else may happen between now and April 13, I will get around the course and across the finish line. Even if the doors fall off.












Monday, 24 February 2014

Life's a piece of shit, when you look at it

I have been unwell, and now I'm starting to feel better.

The sun came out today, and the air was warm. Some of the trees are starting to make cherry blossom. There are snowdrops in the back garden.

So I went for a run - the first one this year without my anorak. A marker! Things are Getting Better.

I decided for a change to go along an old favourite route that has been impassable for a while because of the weeks of rain and strong winds. For a long time it has been reduced to bog and broken branches. Today I decided to go along and see if the going had improved.

I'm on down time this week - short, restful runs ahead of the Silverstone half-marathon on Sunday. It's a welcome change from the long on-road routes I've been following to get the miles in in preparation for the London marathon in April. I don't like running on pavements as cars pass by me. I don't like audiences to my red face and wheezy uphill progress. I've missed the trails of the nearby nature reserve and the raggedy path through my favourite fields.

Anyway, the sun was shining, and I was feeling well and things were Getting Better, so I thought it was surely a sign that it was also time to go back to my favourite route.

To begin with all was fine. It was pretty damp, but that was to be expected, and it was nothing I couldn't handle. The fallen trees had all been cut and stacked. There was quite a bit of sawdust to soak up some of the mud.

Several bike trails helped. For the first mile I followed the flattened route laid down by multiple cyclists that led me through the marshiest parts of the path.

The sun went in pretty quickly, but that was ok too. I'd warmed up by then. And it was so nice to be running in just sleeves rather than the jumper and coat and hat I've been puffing around in for the last eight weeks.

Then I got to the top of a rise and looked down into acres of black bog. A horse in the nearby field whickered softly. I'm glad someone's getting a laugh out of my predicament, I thought, and stepped forward.

To begin with, I tried to edge around the side of it, running on tip-toes and hopping from island to island amid the drowned furrows. Very soon I was very tired. But I was too far in to turn back, so I pressed on.

Around the next corner I came to two hikers, stumbling upwards with walking poles and arctic boots.

"I say, well done," said the man.

"It's a bit muddy," said the woman.

I feigned a cheery wave and ploughed on past them. As I went out of sight around the next corner I misjudged a dry patch for a wet patch and went in up to my ankles. I said a very rude word very loudly. Small black birds went up like an exclamation from one of the bushes to my right.

At this point I knew that the path went down for another mile and then up for another mile and a half before I would emerge onto roadside. My attempts at hopping between seemingly safe bits weren't working and I was knackered, half-way into what was supposed to be a recovery run.

"Ah, f- it," I told the birds, and ran straight down the middle of the path.

There's something exhilarating about taking the dirtiest, nastiest route. I challenged it to break me. I whooped and laughed as I skidded and jumped and ran faster the dirtier I got.

I was feeling well, and things were Getting Better and even the mud didn't matter.

Then I fell into a dog shit.

(This is an event that would challenge the most talented of writers, so from where I sit it seemed pointless to even try to dress it up. And anyway, you can't polish a turd. So to speak.)

You'd think that among that amount of mud I would be hard-pressed to tell the difference between filth and faeces but reader, I could.

Now I know that many of the routes I enjoy running along are also enjoyed by dog owners. I have on occasion had a teeny weeny grumble about being chased by these dogs, or having to run around their owners clustered across the path having a nice long chat, oblivious to their little darlings' behaviour. I thought I had come to terms with the fact that these people - along with the ramblers who come downhill at me in pairs while I am coming uphill and force me to run balanced on the verge beside them - were just part of the scenery of being lucky enough in run in the semi-rural limits of London.

But finding the Taj Mahal of turds smeared up my leg and splattered - whisper it - possibly across my face - I suddenly felt very different.

Also, I didn't feel very well any more.

I kept going, then slipped again - in mud this time - and found that I was crying. I kept going, snivelling and hoping that no one would see me.

My path home seemed like a very long one. My path to feeling well again seemed even longer. I felt very sorry for myself. I felt very depressed.

Then I skidded again, and this time it was a proper pratfall. My arms windmilled, my knees went in opposite directions. I think I made an involuntary "Ag" sort of noise.

And then I started laughing.

And then the sun came out again.

And I had reached the end of the mud.

And then, after a good strong mile-long finish, I was home.

I didn't look at myself in the mirror. I put my clothes straight into the washing machine and myself straight into the shower.


I am getting better. There will always be shit. The trick is to keep going. And to try not to fall in it.



No, I don't fancy cleaning them either


Help me keep running, and help supporting children with autism. Please click here. Your support means everything and makes all the difference. 

Tuesday, 21 January 2014

Reasons to run, number 678,124,954

When the sun goes in again

and the mornings feel like you're sliding away into the dark

and all the words that might make you feel better are all words that you've used before, so many times, and it feels too much, too much to have to use them all again, to dig them all out and order them because it would just feel like you were kidding yourself or going through the motions

and anyway, really, three strikes and you're out, you should have a handle on this by now, get a grip, you're making people uncomfortable, stop being so self-absorbed, it's not about you, its about her, she's the one who needs your help, who tunes out more and more now or loses her rag so loudly, who watches her siblings go out to parties and sleepovers, who gets left behind and is never invited, so how dare you get upset or cry because its not about you its about her its about her

- but you are the person who has to sort it out, and keep encouraging and be positive and to do that you have to keep going even when all you can do is wonder what words to use and, while you're wondering that, listen to other people's words,

which fall like blows

like this one:

"I can't teach her any more. I can't - I'm not trained to work with These People - I'm very frustrated."

and this one:

"So, then, we'd like you all to look at your children when they are resting, or relaxing, and see what they are doing, and see what they like, and make a note. Perhaps that's something that you could encourage them to do in clubs, to meet friends."

(this is it? this is the sum total of your advice? don't you think i'm doing that? don't you think i've been doing that for years and years and years?)

and this one:

"He's not the first." "To be mean to you?" "To think I am incapable of getting hurt."

(and i'm wiping away tears in the dark before my husband sees i'm crying at the tv again)



and it's just

too much



so i run



Click here to find out how I'm aiming, via running, to help children with autism and Asperger's Syndrome learn, thrive and achieve.














Monday, 6 January 2014

Happy New Year

It is the middle of the night. I was fast asleep and now I am wide awake. I lie motionless for a moment and try to figure out what has woken me.

It only takes a moment before I hear it: Drip. Drip. Drip. A pause. And then another. A pause. And then another. Drip.

There is water coming into the bedroom. Now that I can hear it, I can hear too the rain and wind whipping at the windows and battering the house. I reach over to check the time: it's four o'clock in the morning. In three hours the holiday is over and everyone has to get up and go to work and to school.

Correction - the holiday is over right now.

I lean over and nudge my husband awake.

"We've got a leak," I whisper to him. He's awake instantly. Then there are lights on and moving and checking the attic and the windows and tip-toeing not to wake the children and whispering and putting down something to catch the water. My eyes feel scoured out and my head thumps with tiredness.

After a while, we put the lights out and get back into bed and try to sleep.

I can't sleep.

I am worried about going back to work and leaving my lovely girls. In particular I am worried about how Grace will cope with going back to school. Her school experience has improved vastly, almost beyond measure, at her new secondary. But still, it is often overwhelming for her and she gets very tired. The last two weeks of the last term were a maelstrom of tears and scenes and upset and forgetting and losing and needing to sleep and needing to be quiet, while routines moved and excitement built and lights blazed and daylight diminished and the world seemed to be tipped off-kilter.

I lie awake and listen to the drip and I worry.

After half an hour of this I am even more awake. I need to go to sleep, I tell myself, so I can be on good form to help Grace start term in - I check - two and a half hours. I need to go to sleep, I tell myself, so I can stay calm and happy and optimistic if she wakes to be none of those things herself. I check the time again. Five minutes later I check it again. My headache tightens.

At this point, out of nowhere, I remember the run I did on Sunday morning. It pops into my head unbidden and makes me smile into the darkness.

What a lovely, lovely run that was. New shoes, ready legs, starbursts in icy puddles. The air smelled of iron and the tang of forest mulch. The sun came out, like a reward. And then there was that wonderful moment, about three-quarters of the way through, when I realised that it was easy, so easy, and that I was flying, and I was smiling so widely that a passing car beeped at me, like it was saying hello to the local loony, and I didn't care because I loved my legs and my body and whoever was in that car and really, everyone in the world in fact, because I knew that everything, all of it, was just fine.

I lie in the darkness and laugh gently to myself at what I must have looked like and how great it felt, and I remember again why I run and I remember again that everything will be fine and that I can do this. Finally, sleep comes.

Just less than two hours later, the door flings open and Betty marches in, nightdress swinging, clutching a soft toy and what looks like a collection of her clothing, already mid-sentence: "..so Mummy, I thought... would you...? Teddy needs..." and she's climbing in, pressing her little toes into my side and elbowing space between my husband and me and there goes that last bit of sleep. I pull her to me briefly and squeeze her and kiss her soft cheek and re-direct her queries to my husband. I sit up and move my leaden legs out of bed. I pause, and think again of that run, and then I square my shoulders and go to Grace's bedroom.

My big girl is fast asleep. I get in beside her and put my arms around her and I hug her awake. For a brief moment she protests and then she smiles, eyes still closed, and hugs me back. She smells of vanilla and the soft stuff of dreams. I tell her I love her. She murmurs that she loves me. We count to three together, gently in the darkness, and then we both get up.

A short while later I wave her off at the front door. She steps outside into the dark and the rain and for a moment shudders. Then she pulls her hood over her head and turns to me and pulls a mock-groaning face and smiles and says 'Bye' and I say 'Bye, darling'. And both of us know that it's going to be alright.


If you liked this, or recognised some of it, or would like to know more, please consider supporting me in my London Marathon attempt this year. Click here to find out how I'm aiming, via running, to help children with autism and Asperger's Syndrome learn, thrive and achieve.