Sunday, 29 April 2012

Nigel raises awareness through his Marathon effort

Well that's it over and done with!! London marathon 2012 was a fantastic experience and the support I was given along the 26.2 miles was tremendous.

The night before I only managed 3 hours sleep, excited and also nervous of what lay ahead. Having been up since 4:45 at my hotel in London docklands I made final preparations for the day and headed down the the hotel restaurant for breakfast. The breakfast available was fantastic everything you could think of, so tempted to get a cooked breakfast but porridge and small amount of scrambled egg was Ll I had.

The biggest test of the day so far was trying to get to the start line in Greenwich Park. I headed for the nearest tube station and my plan was to follow other fellow runners but when I arrived at the station it was deserted.
Soon a train arrived and I jumped on, nobody in sight except one gentleman who I asked for directions. He explained where I needed to go to change trains and platform number, and the kind gentleman even showed me to the platform I needed, thank you to that gentleman.

Arriving at Greenwich around two hours before the start I had a wonder around the start. Grabbing free water and locazade I parked myself under a tree and listened to some music and tried to relax.
Watching some of the strange sights arriving included, a man with a tiger on his back, cool runnings bobsleigh team complete with bobsleigh.
With 9:45 fast approaching I handed my bag in and lined up at the start, mine being red zone 4.

9:45 and I'm off hitting the London streets and 26.2 miles to go. The first few miles came and went very quickly support for everyone from the crowd was fantastic, and so many different sites along the route, bands, dancers etc.

Reaching the half way point and my time was 2:04 which I was more than happy with. Now in the heart of the docklands and passing the 14 mile mark and seeing the elite runners passing me on the opposite side hitting their 21 mile mark, I was wishing I was at that point.

Legs starting to hurt and coming up to a gel station I was greatful for the extra boost. Crowds were massive and the idea of having my name on the front of my vest was an excellent idea, the boost I got from the crowd shouting my name was just what I needed.

Getting to the 21 mile mark and the sight of the National Autistic Society cheering point was fantastic, the cheer and calls of my name kept me going for the final 5 miles.

At this point I was slowing down my time was slowing and at 25 mile mark my time was 4:18, one more mile need to keep going that's all I could think, turning into Birdcage walk the welcome sign of 800m to go Buckingham Palace in the background turning left onto the mall it was there just a few 100m to go the crowd knowing I was hurting shouting my name, policemen and women, the armed forces people and the marshalls shouting come on your there keep going was nothing I had experienced before 4:34 and I was done its over I have completed the Virgin London Marathon 2012.

For the next few minutes everything was just a blur a was ushered into a line of other runners and timing chip was removed and medal presented.

Collecting my bag getting a well deserved drink and pictures taken, I headed for the NAS meeting point. Greeted by NAS volunteers who kindly carried my bags and escorted me the short walk through Horse guards parade and to the NAS hotel.

The welcome I received was fantastic everybody cheering when I walked through the doors. I gratefully accepted the offer of a shower and massage just what I needed.

So time to head back to my hotel and have a well deserved beer!!

I would like to take this opportunity to thank everyone who has supported me and sponsored for the London marathon. A massive thank you to The National Autistic Society for giving me the opportunity to complete one of my lifetime goals and for the fantastic support they gave me on the day.
Another big thank you has to go to the crowds in London you were fantastic and helped me get through the day, you are a credit to Britain!

My page:
[this was taken from Nigel's blog, here:]

Friday, 27 April 2012

Grace Under Pressure: Sophie's Marathon story

When I think about Sunday, April 22, the first thing I think of is the noise: the boom and clamour of the crowd all around, as if I were caught in the centre of a rolling wave that hurled me along and along; the whoosh and thump of my heart behind my eyes and in my ears; the steady one-two-three-four of my breaths, matching my stride; and behind it all a whisper, an insistent murmur behind the din and the hot roaring pain that came later, a voice that said: Grace, my Grace, my girl.

The night before the race I travelled to my sister-in-law's flat, a tiny fairytale garret at the top of an old Victorian house, that looked out over south London and the start line, fifteen minutes' journey away. All that day I had been distracted and quick-tempered, pretending to be a participant in Saturday family time while ticking off the hours in my head before it was time to leave. When I could finally go and pack it was a relief, even though, checking and folding my clothes, I felt more as though I was preparing for the executioner's block than the winner's podium. It took an age to pin my running number onto my vest -- my hands were shaking so badly that I fumbled the safety pins and pricked my fingers repeatedly. When I came downstairs to say goodbye to everyone the children stood awkwardly in the doorway, half-turned to run away and play again, half-aware that something was expected from them in this moment. A good luck card was produced. I hugged and kissed them all and bent to pick up my kit bag and then Grace was in my arms again. Voice muffled in my chest, she said: "Do this for me, mummy." I held her out from me to look at her face, ready to say something light-hearted and reassuring when, solemnly, she raised three fingers to her lips and held her hand out in salute to me, mimicking the gesture of love and respect used by her new heroine from the Hunger Games. It was so Grace: dramatic and funny and sweet, and heart-breaking.

That night I slept badly, tossing and turning for hours on the edge of nervous dreams that threatened to throw me into wakefulness. I rose at six, ate porridge and brushed my hair looking in the mirror at my terrified face and listening to the radio, which seemed to be playing in another country -- who were these people who could laugh and joke and comment on the lovely weather, preparing for a relaxed day of newspapers and walks and roast dinner? Outside the sky was clear and I walked down the hill towards the train station alone and in silence, avoiding Saturday-night piles of sick and litter. At a bus stop a woman lit up a cigarette. Then I turned the corner and there were loose knots of people with red race-day kit bags, waiting for the next train. Among them was a friend and fellow runner for the National Autistic Society. The tightness in my stomach loosened.

I don't remember very much about the start, except the mass of people around me and in front of me and behind me and the calming voice of my friend, who had done it before, and kept me distracted with stories. Helicopters buzzed overhead and cameras turned on us and a voice on a tannoy urged us to repeated cheers and whoops as we waitedly awkwardly, nervously, for the countdown to the start. Then there was a walk, a shuffle, people bouncing on their toes, discarding jumpers and waving goodbye to friends and somehow I'd got to the start line, a huge arch bright red against the blue sky and the pliant mesh of the timing board spongy beneath my shoes, activating the chip tied into my laces, and I was running.

Almost immediately the crowd was there, still modest at this point, strung out like beads along the barrier, sending us good luck and smiles as we set off. We passed an elegant Georgian home in the garden of which two young people on brass instruments puffed out a slightly melancholy version of the Rocky theme tune. I found myself pacing behind a purple Teletubby and in the time it took to puzzle his name -- what was it again, was he Po or Tinkywinky? -- I realised the first mile was done and I was running the marathon and bobbing along in the centre of a crowd all streaming forward in glorious colour and purpose. For the next few miles we passed several churches which had opened their doors to bless us and cheer us. In front of one, a vicar swung holy water, sending droplets arcing out over the shifting mass, and we raised our hands back, a communal thank you of hundreds. Then there was a choir and a band, and then another band, and then a string of pubs all open, with people dancing on wooden tables outside and waving at us.

So the miles passed. We came to our first incline and as one we all bent, and suffered just a very little bit, and turned to smile with relief at each other as we came over the brow. I found my pace with ease, checking my watch now and again to make sure I wasn't going too fast, or too slow, and finding every time I checked that my body was now automatically doing what I had trained it to do all those months and was carrying me forward with ease. A bit of me floated away and just watched the carnival around me as I progressed. Then the route turned right, and we all turned right and suddenly in front of us was Tower Bridge and I'd run twelve and a half miles and was passing under the grey turrets and the crowd was going crazy. Down along the highway the crowds were deeper and deeper -- three or four back from the barriers and screaming and shouting. It was a huge effort not to speed up, for I was loving every moment, grinning like a loony, knowing that my family were going to appear at any moment at mile fourteen, where the National Autistic Society had organised a cheering point. I ran with my neck craned, seeking out the purple and white and red balloons and banners and feeling goose bumps running up along the back of my neck in anticipation. And then there they were -- only on the other side of the barrier where I couldn't touch them -- so I yelled and jumped up and down, pumping my arms in victory and blowing kisses and the roar that went up was for me, for me and for Grace and for us all and as I ran away from them all I was overcome and saw the route ahead of me blurred for a while.

When I came to again it was mile fifteen and something wasn't right. Before I had time to realise what was bothering me I felt a hand on my shoulder, the runner behind me directing me to a voice in the crowd to my left. It was my friend and former running partner Karen, who had started with me nearly a year ago, puffing and blowing and swapping stupid jokes with me on those first training runs as we contemplated our first half-marathon. I shrieked with joy and ran to her and she grabbed me. Both of us wild-eyed and teary, we exchanged kisses and loving words -- none of which I can remember now -- and then I was running again, careering forward in a state of such massive emotion that I'm amazed, thinking of it now, that I didn't spontaneously combust on the spot.

By sixteen and a half miles I'd figured out what wasn't right. The pain in my back had bloomed again, despite those weeks of enforced rest and expert osteopath attention, and the first corresponding shivers of pain were sending feelers down my right leg. A swooping downward lurch of panic hit me. I tried to shake it off and keep going but the pain was building very quickly and with it, my distress.

So I did what you do when the going gets tough and the tough need to get going: I went for a wee and a think, veering off the course to where a line of portaloos stood and barricading myself inside one to shut in my panic. There, in the dim blue light and the animal smell of other people's fear, I chewed painkillers and took shaky breaths and thought: how do I do this, how do I get going again. The murmur told me: Grace.

So I came out and I started running again, only I couldn't. I told myself I would walk half a mile and then try again. I counted down to seventeen and a half miles and started running again. But the pain built up again, so I walked and hobbled, pushing out thoughts of failure and ashamedly hoping that no-one would see me walking, and then I forced myself to run again. By now I'd passed the eighteen-mile mark and there again was Karen, yelling at me from the barricades. Sagging with relief and self-pity I went to her and fastened myself around her neck and told her, choked, how much it hurt. She hugged me back tightly and told me how well I was doing. Around us the crowd looked at our embrace and looked at my face. Arms came out and patted me and told me I could do it. A blur of faces pushed into mine and said, come on, come on. Karen released me back into the flow of runners and I found my pace and ran again.

The next three miles were misery. At this point the route had taken us into the heart of Canary Wharf, all hard-faced glittering windows and no progress: we wound around and around, marking time and miles until we could be released back towards the centre of town and the final stretch. But not yet, and not yet, and not yet. We passed restaurants and wine bars and offices -- including my own place of work, an incentive to run straighter and a bit faster, no matter how much it hurt -- and here the crowds shouted for Toby and Robert, and yelled "Come on old man!" and rugby shouts of "Whoooooarrrrrgh!" for confident young specimens who strode out and overtook all around me.

Then, thank God, we were released, leaving the glistening maze behind us and heading back out towards my family and friends and the NAS crowd of supporters who I knew were all waiting at mile 21, scanning the crowd anxiously, their gazes turned so far out into the mass as they searched for me that they jumped when I came up the inside lane and whooped in their faces. Ecstatic, I did a little dance and they laughed, and grabbed me. My parents and sisters, tears in their eyes, clutched me. My husband leaned forward for a kiss and Betty and the boys -- hot and sticky -- smiled and put their hands out to me. And there was Grace, smiling and kissing me and asking me: "Why are you crying?"

At that point I thought I'd done it. Leaving everyone I loved behind me with a wave and a promise to see them at the finish, I thought I'd cracked it. I ran on, back along the highway -- the roar building to an astonishing pitch -- and into Blackfriars tunnel and an incline to the Victoria Embankment. As I bent into it the pain in my back came over me in a huge wave. For a panic-stricken moment I thought that I was going to be sick or black out. Breathing, concentrating, I emerged from the tunnel sandwiched in the middle of the staggering pack, to an immense crowd screaming encouragement. A sign told me I had only two and a half miles to go. Around me I could see runners smiling through their exhaustion and managing a final spurt. But all I could manage was a hobble, a limping half-walk, and then a walk -- biting my lips not to cry in front of all these people. My watch showed that I still had twenty minutes before five hours had passed. I walked as quickly as I could bear to, hoping to ease out the pain enough to pick up a run again, and started a distracted, frayed conversation with a similarly wrung-out runner alongside me.

At the corner of Big Ben I turned and saw, if it were possible, an even bigger crowd. I started running again, unable to bear the humiliation of walking in front of so many, despite being almost cross-eyed in pain. The route turned into St James Park and along Birdcage Walk, and while my mind was yelling at me to stop, it was also registering dimly that this was nearly the end. A sign said 800 metres and I nearly threw myself down on the floor at the thought of how far I still had to go. But then I turned and there was Buckingham Palace and the Mall and people were ten deep at the barricades, hanging off lampposts and thronged, waving, in the fountains and there was no way I could stop in front of them all, so I plodded on, weaving and bent, and there in front of me was another red arch like the one I had gone through nearly five hours ago. The clock on top of it said four hours and fifty-four minutes. I headed for it and was aware that I was smiling, that we were all smiling, and that it was nearly the end.

I crossed the finish line and raised my arms intending to make a victory gesture but found instead as I slowed to a final stop that I was clutching my head and weeping. Wiping my face with sticky hands, I followed lines of shattered runners submitting to the attentions and directions of race officials. A young man removed my time chip from my shoes while a woman strung a medal around my neck. In a daze, I collected my kit bag, slung it over my shoulder and started out into the crowds again to find my daughter.

Grace Under Pressure: Going The Distance as an Asperger's Mum is published by Piatkus in October 2012


[This piece is taken from Sophie's blog, which you can read here:]

Thursday, 26 April 2012

Fixing SEN?

Last week a group of campaigners got together to discuss the Government’s proposals for reforming the special educational needs system. The focus group, held at the NAS’ Manchester office, brought together the expertise of people on the spectrum, parents and professional knowledge, and focused on what needs to happen to make the system.  Key issues that came up included:
  • the importance of schools talking to parents and listening to what they have to say
  • teachers having appropriate training in autism and relevant skills to work with children on the spectrum. Often these skills can look like good practice in working with other children but are particularly important for young people on the spectrum
  • the importance of autism and equality awareness among other pupils as well as staff
Latest News: Since this focus group, the Government have finally published more details of their plans for SEN.  Their long-awaited "Next Steps" paper confirms the Government’s plans to progress the proposals made in last year’s Green Paper.

You can read the report here

You can read our response to the announcement here

Monday, 23 April 2012

Tony meets his MP about the Undiscovered Workforce

I met with Justine Greening, my local MP, to help the Undiscovered Workforce campaign.
We spoke about adjustments in the workplace and talked about experiences in job interviews. Justine was a good listener and was very interested in the campaign and was going away to learn more from another MP, Lee Scott, who is also supporting the campaign.
Why don't you do the same as me and support this campaign? Write to your mp, go to their weekly surgeries. Let's all raise this issue together and help each other to get into the workplace.

Wednesday, 11 April 2012

Machita: my role as an ambassador

Hello, my name is Machita, mum to twin sons aged eighteen who both have Aspergers and I am proud to be a National Autistic Society (NAS) Ambassador.

Taking on the role has opened up many opportunities for me to help in the campaign to bring autism to life to people that are aware, some interested and some not that autism exists. These opportunities have ranged from writing letters, being interviewed for a website feature, press releases, contributing to an NAS DVD to speaking at the All Party Parliamentary Group for Autism at Westminster and being involved in a lobby day at Westminster regarding the Health and Social Care Bill in relation to autism.

I was delighted to be asked to take part in all of these activities and said yes straight away: then was the time to think about what I had said yes too and panic a little! No need to panic though because I know what I am talking about, after all who could make up the many experiences me and my family have lived through and continue to face into the future and who would want too!

If you have an opportunity to contribute to improving the lives of people with autism and their families, go for it, don’t panic and always remember you know more than the people you are speaking too because you have the real life experience and it is their responsibility to listen to you. It is amazingly rewarding and the staff at the NAS are hugely supportive which makes it a great experience all round.


Wednesday, 4 April 2012

Raising awareness on WAAD

Monday 2 April saw people across the globe come together to celebrate World Autism Awareness Day (WAAD) and raise awareness of the condition. Among those tackling the subject on the airwaves and on the pages of newspapers, were many NAS Ambassadors and Champions.

Here's how you got involved - thanks everyone who took part!

Ambassadors go global

AAN Ambassador Robyn Steward and Jonathan Peckover, the eldest son of Ambassadors Sepi and David, joined a trans-atlantic panel discussion on the BBC World Service. The four-strong panel of adults with autism, including people from the US, discussed how autism affects their daily lives and gave advice for listeners in similar situations. It was a really positive discussion and really showed listeners what a valuable contribution people with autism can and do make to the global society. Well done Robyn and Jonathan! Listen here.

Daybreak appearance

AAN Ambassador, Sophie Walker, was filmed at home with her daughter, Grace, for a special WAAD feature for ITV Daybreak. Sophie talked about having a daughter with Asperger syndrome and how the condition can affect girls differently from boys. Sophie also talked about writing all about hers and Grace's experiences in a new book, which is out later this year. Watch Sophie on Daybreak (about 1 hour 45 minutes into the programme).

... Oh, and lets all keep our fingers crossed for Sophie, who takes on the London Marathon later this month!

Hitting the local radio waves

A whole load of Ambassadors and other awareness raisers got involved in their local area by taking part in discussions about autism and WAAD on their local radio stations. Ambassador, Jennifer Waddington took to the airwaves for an interview with BBC Radio WM and Ambassador, Victoria Thompson talked on BBC Radio Sussex and Surrey - both did a great job of describing autism and raising awareness for listeners. Why not listen to their interviews for yourself:

BBC Radio WM: Jennifer Waddington (about 1 hour 5 minutes into the programme)
BBC Radio Suseex & Surrey: Victoria Thompson (about 1 hour 52 minutes into the programme)

These are just a couple of the many discussions that took place on WAAD on local radio stations all across the UK.

Letters to editors

Lots and lots of people got involved by sending the template letter we prepared about WAAD to their local papers. So far we know that around 50 of you got involved by sending letters to your papers. There's been some great coverage and we are expecting to see more over the next few days.

Thanks again to everyone who took part on Monday and over the weekend, and a belated happy WAAD to you all!