Sunday, 26 June 2011

When is a stroppy kid not just a stroppy kid?

One of the hardest things about being a good mum to Grace is knowing when she's being a stroppy pre-teen and when she's being an Aspergirl.

Grace was formally diagnosed with Asperger Syndrome only last year, after five years of waiting lists, inconclusive assessments, repeated questioning and a lot of shoulder shrugging. By then Grace's dad and I had years of rationalising that we suddenly needed to re-examine and recalibrate: from how we reacted to the little eccentricities to how we dealt with odder behaviour, to coping with the bigger things we really worried about. Even now we're only at the start of figuring out what's AS and what's not (and we don't always agree.)

For a long time we thought Grace's distance and 'otherness' might be a reaction to us divorcing. We put down to eccentricity her fear of dogs and balloons and hand-dryers (we've since learned that Aspies are extraordinarily sensitive to their surroundings -- what we heard as loud noise was really painful to her.) Her inability to read people, or to show curiosity about them or participate in conversations was of course classically autistic and seems so obvious now that I berate myself daily for not realising it sooner and tell myself to be more sensitive in future to her behaviour.

So -- when Grace greets me at the school gates with a glare and the words "I'll kill myself if you make me do piano practice" do I accept that she just has no filter for her sentiments and is anxious that she may not be able to play something new? Or do I tell her off for being rude to me and put it down to a ten year old's melodrama?

When she refuses to eat her dinner because I have forgotten about her dislike of houmous (bad middle-class mum!) and put it in the centre of her plate, where it has touched other foods, do I scold her for over-reacting and tell her to eat the rest? Or do I calm her down and get her a new plate?

Last week on our way home from school Grace was railing about the unfairness of being told off by her teacher for lashing out at a classmate (and familiar foe) who was taunting her (again.) In fury Grace had pulled this girl's hair - and received a whack from her by way of compensation. They were both reprimanded and warned not to do it again. Grace was baffled by this and felt a huge injustice had been done to her.

As she sat in the car shouting that her life wasn't fair I tried to reason with Grace that she shouldn't have touched the girl who was teasing her -- no matter how hurtful or annoying. Grace just shouted louder, fists clenched on her lap and the colour rising in her face: "This was the WORST day of my LIFE."

At that I saw red and shouted back: "For God's sake Grace, how could you possibly think it's ok to go around pulling people's hair? What planet are you on?"

For a moment she paused then her face crumpled -- and she looked like a confused 4 year old again --  then bent her head and sobbed. Loudly. Then more loudly. Then wailed and yelled louder still. In the confined space of the car the amplification of Grace's rage and hurt was overwhelming and unbearable, like an audio bomb had gone off.

Navigating rush-hour traffic I barely saw, I felt panicked and sad. Grace really is on a different planet from the rest of us -- it's how Aspies see themselves. A widely-used and popular online forum for the autistic and Aspergers community is For a child, being on the wrong planet must be even more frightening and confusing. Had I made a terrible, insensitive blunder and compounded her feelings of separateness and worry? How then should I teach her to rein in the kind of behaviour that looked to others as self-centred and wilful? Was it one or the other or both?

At home I fretted and frowned while Grace played piano (flawlessly) and I cooked.

Over the dinner table we faced each other in tentative silence. Then Grace said: "Hey, Mummy --" and pulled the silliest face she could imagine. I laughed, and she laughed, and baby Betty cheered and threw food in excitement.

It was a mistake to try to separate bits of my daughter into comprehensible compartments. She is the sum of her parts. She is Grace and she needs patience and understanding and love. Lots of love.

Monday, 20 June 2011

The loneliness of a (not very) long-distance runner

On Saturday morning I ran 5 miles in an hour.

More experienced runners will groan or smile at this: it's not very far, or very fast.

But it's further and faster than I've done before, so I was euphoric, as was my running partner Karen. Tomato-red and beaming, we high-fived each other -- then bent forward in perfect synchronicity to clutch our knees and catch our breath.

Running with Karen is a treat. We're evenly matched in both fitness level and sense of humour. Our weekly run is made all the more enjoyable by our ability to coax one another along the harder parts of our route, and to elicit frequent fits of laughter from one another. This week was no exception. At one point Karen got a painful stitch just as we joined a long stretch of public road, but in the interest of not stopping she gamely ran on with her arms above her head to alleviate the pain (this does work) -- all while streams of traffic tooted at her and I giggled. She in turn found it hilarious when later on, our reserves sorely tested, I misjudged a corner and ran straight into a thicket which would have taken off much of my hair had I not been wearing a cap. Cue lots of jokes about me running the Royal Parks with a combover/mohican/enter your daft hairdo here, while we gasped our way to the 5-mile finishing point.

So I approached today's run with some nervousness given that I would be attempting to repeat Saturday's feat alone. Work, families and weekday juggling routines mean that Karen and I find it hard to run together more than that once a week.

An encouraging text arrived from her just as I was wondering whether there were any grounds at all for not running until tomorrow. Being shamed into training for a fundraising race in which I have cajoled family and friends to stake money is not a good feeling -- but within five minutes of receiving her message I was locking the door behind me and setting off.

The weather was absolutely gorgeous and I started at a modest pace. For the first fifteen minutes the path took me through the park, alongside the stream and down between the allotments, bursting squares of leafy fecundity. As well as making good progress and not being at all out of breath, I settled on the 'leafy fecundity' phrase and so was feeling very pleased with myself when I popped out at the top of the golf course and turned right for the nature reserve.

At this point the road slopes upwards and goes past an uninspiring development of new flats. The combination of gradient and utilitarian boxes cooled my momentum, though alas not literally as the sun had emerged by now and was toasting me uncomfortably. Still, I made it up the hill without stopping and coasted into the woodland part of the route prepared for five glorious minutes of downhill pace.

The weekend's downpours had turned the dirt track into a boggy cauldron across which I hopped and cursed. Hopping downhill is a lot less energy efficient than running downhill and by the time the route wound uphill again towards the kissing gate I was starting to panic. My energy levels and confidence were shot, but not to complete the run would feel like a big failure. I just couldn't figure out how I was going to make it up that hill though. At this point the track narrowed into a shadowy tunnel where thorny trees on either side meshed to blot out the sun. I found myself thinking of the scene in the Wizard of Oz where Dorothy is chased through the wood by the scary flying monkeys -- o for a flying monkey I wondered wildly. At least then I'd be aloft.

And then -- salvation. An elderly hiker was 100 yards ahead of me, striding along with his stick and putting me to shame as I puffed and staggered behind him. Even better, someone else coming the opposite way saluted him and strode towards me with a smile. I was forced to straighten up, smile like everything was fine (though I'm sure my colour betrayed this) and summoned the wherewithal from I know not where to make it up the hill.

And then it was home free. Ok, so I had to resort to my ipod for the last fifteen minutes: to whit, a playlist of slightly crackers pounding gothic beats (revelation: some 40-year olds are still listening to Sisters of Mercy.) But by that point I was without shame. Whatever got me to the end. I would have worn my shorts on my head if someone had told me it would give me extra reserves of energy.

So: huzzah for two 5-mile runs in the space of three days. Now I just have to figure out how to do it two-and-a-half times over in one day without the help of flying monkeys, pensioners and 80s trash. That's going to be some conversation with Karen.

Tuesday, 14 June 2011

Treadmill Dreadmill

Today I got up at 5.30 am to get to the office.
I left at 3pm to pick up my daughters and bring them home.
Then the real work started.

Having negotiated with both girls good reasons for getting out of the car, through the gate and into the house there then followed the tricky task of supervising Grace's homework while simultaneously playing with two-year-old Betty (and her bricks), cooking the dinner and unloading the dishwasher.

This is no fun, but its a lot less no fun for me than it is for Grace.

Grace hates homework with more than your average nine-year-old's passion. She hates it because she knows she'll either understand it with a glance and do it in under five minutes (this applies to story-writing, grammar exercises, spelling exercises and any kind of drawing) or she will not understand it (maths, reading comprehension, any instructions that the teacher hasn't calmly explained several times before she brought the worksheets home), and so spend the next hour in a panicky fog of incomprehension.

Tonight it was mainly grammar exercises so we managed, but a set of previously unseen instructions did tip the balance briefly. Grace held her head and rocked back and forth while rolling her eyes, urging herself to understand what she was supposed to be doing. Sometimes when that happens I have to calm her down, or she will start to hit herself. Sometimes I have to ignore her. And sometimes I have to tell her off for being silly. Tonight I had to do all three, and then I shouted. Immediately her level of distress mounted and consequently it took us another ten minutes to calm down, and another five before we could start again.

Sometimes I still find myself thinking that Grace will grow out of this. Sometimes I tell myself she'll learn not to do it. Most of the time I don't know what to think so I just deal with the situation in hand and try to move on.

After homework, we had tea. Betty had two bites, declared hers was "all gome" and pointed to the freezer asking for ice-cream. When I said no she started screaming and climbing out of her high chair. I tried to calm her down, then when that didn't work I ignored her, and when that didn't work I told her off for being silly. That didn't work either. So then I shouted. Immediately her level of distress mounted ...

You'd think by now I'd have learned not to shout.

Betty is now in bed and Grace is watching the Simpsons, as we negotiated during the homework stand-off. I am desperate to go for a run, both to de-stress and to get some mileage under my belt by way of training. My husband is still at work and not due back for more than an hour, so it will have to be the treadmill.

Except. The treadmill sits in the middle of our front room -- also known in our house as the Old Curiosity Shop. Since the weather and Chris's working hours improved (both a brief respite I now realise) I have been running outside in order to avoid the chaos. So now after a period of neglect I approach the treadmill with caution. Rows of drying shirts hang from it, piles of files are stacked alongside it and a couple of empty DVD cases are balanced on the top of it. I remove all of these and extract the lead. Except, somehow, the machine has moved and is now further away from the plug socket than the lead will reach. I strain and pull at it but the metal mass is unmovable.

My blood pressure is so high I feel as though I might faint. In the olden days I would have had a cigarette and a glass of wine in the back garden until I calmed down (and then had several more of each). Now I'm going to have to be grown up about this and set my alarm for early tomorrow morning. I'm not sure how I feel about this but maybe the best thing to do is just to deal with it and move on.

I am not going to go and shout at the treadmill...

Saturday, 11 June 2011

Toxic Running

So today was my first run for two weeks, after a lengthy holiday which involved transatlantic flights, lots of champagne, large portions of fried food, very little sleep and significant partying.

I was dreading it. However I had already used the Chinese Takeaway Excuse (TM), as clever readers will have spotted, when Karen came knocking at my door at 8.45 am this morning -- so I had no option but to take a deep breath and set off with her.

Result: I set a personal best, shaved five minutes off my usual time for completing our local 3.5-mile route and didn't stop once, not even on the hills.

Tempting as it is to conclude that a champagne and fried-food diet is the way to train for October's run, I am trying to avoid the temptation.

Let's see how tomorrow's run compares.


Thursday, 9 June 2011

Rain, Rain, Go Away

I had scheduled a training run for tonight but am instead watching the rain drip from the trees and railings outside my house. It's a nice evening otherwise: the air smells clean and the rush-hour traffic has subsided.

So here we are: Test Number One. All day I have watched with delight the rising total on my fundraising page and looked forward to the buoyant pace I would set after work. I've received several affectionate and encouraging emails, some from the most unexpected sources, alongside the pledges of hard cash and I am thrilled that my adventure has moved so many people already.

I'm running on Saturday morning with my friend Karen: we take it in turns to haul each other out of bed on weekend mornings and laugh at each other as we groan our way up the gentle hills of the local nature reserve.

But I should get a session in before then.

The rain is not easing and my husband is grey-faced and tense after another full-on day at work. I hear myself suggesting a Chinese take-away and bottle of wine to cheer him. Result: he perks up immediately. I am however stricken with guilt and a feeling of irresponsability.

As I put down the phone on Man Chui's perky delivery girl (wait time: 20 minutes) the rain stops abruptly and light emerges from behind the clouds.


(Or: Budger, as my two-year old said cheerily to me this morning.)

I resolve to set my alarm for 6am tomorrow. Honest.

Wednesday, 8 June 2011

Begging, Blogging and Bursting: fundraising fuelled by chocolate cake

Today I have taken the first steps towards what I hope will be a big pile of cash for the National Autistic Society. (I should add they were not literal steps. I haven't actually done many of those yet. My trainers remain askew, tongues panting, under my desk - where I threw them after my last run two weeks ago.)

No, today was spent setting up my fundraising page and asking my friends and family to support me in my endeavour to run a half-marathon for the charity that seeks to explain and advise about autism and support those affected by it.

I also spent rather longer than I'd like to admit setting up this blog (I know, it needs more work. Too much pink. ) A Twitter feed is next. What I lack in graphic design I make up for in energy, invigorated by a feeling that after months and years of desperately trying to do the right thing for my elder daughter, I have finally found a measure of practical support. My typing and clicking and formatting has been fuelled by the feeling that this -- THIS -- will make a difference. I've also been mainlining slice after slice of chocolate cake (last week was my birthday. ) As well as boosting my blood sugar levels it's also giving me the incentive I need to get up from the screen at some point and run it all off. 

In between marketing myself and begging for money I made six phone calls to in effect do the same thing for Grace: asking educational and legal advice organisations how we appeal the recent decision by the local educational authority to refuse her the statement of special educational needs that would have funded the extra help and support she needs in class.

But more of that another time.

Tonight's introduction is just that, and I shall keep it short and sweet. Here's what I'm up to and why:

I am running the London Royal Parks Half Marathon on October 9 for my daughter Grace, who has Asperger Syndrome.

Grace was a sunny and affectionate baby who has grown into a loving and beautiful girl. However, I have watched her become anxious and upset as she gets older and conscious of her differences. I have spent years seeking advice and a formal diagnosis. I have cajoled healthcare professionals, psychiatric experts and teachers to get her the support she so badly needs and it has always felt like an uphill battle. I have been encouraged by kindness but more often have come across shocking and unacceptable levels of ignorance.

Grace has problems interacting with her classmates and performing important life skills such as using money and telling the time. On the other hand she creates beautiful art – pages and pages of it – and writes spine-tingling stories and performs drama with such intensity that her teachers and classmates all look forward to the days when Grace is doing assembly or reading the story. Despite that, Grace says she would rather be ‘normal’ and not have any of these talents. When she says or does the wrong thing she is painfully aware of it. When this happens she feels as though she is letting everyone down.

I am running the Royal Parks Half Marathon to tell Grace that I will not let her down. I am running under the National Autistic Society banner to raise as much money as I can for my beautiful girl and for children like her so that we can start to understand autism better and so that we can explain it better. I want to nurture our special kids and watch them blossom, not wilt.

In the short-term I am aiming to raise £500 pounds. Longer-term, this is preparation for an even bigger event:  if my application is successful I'll be running the London Marathon next year -- in 2012's centre of Olympian excellence! -- for the National Autistic Society.

But first things first. I have to study the Royal Parks training plan and work out how I can build up my twice-weekly 3- mile run into a 13.1 mile circuit. This will involve keeping going for more than 45 minutes: a mysterious and wonderful thing to me if I can make it happen.

And even before that, there's the challenge that is Twitter. So I'd better get to it, before the last cocoa high wears off. Wish me luck.

To donate, please go to: