My Son's Not Rainman
First published in Great Britain in 2016 by
Michael O’Mara Books Limited
9 Lion Yard
Tremadoc Road
London SW4 7NQ
Copyright © John Williams 2016
All rights reserved. You may not copy, store, distribute, transmit, reproduce or otherwise make available this publication (or any part of it) in any form, or by any means (electronic, digital, optical, mechanical, photocopying, recording or otherwise), without the prior written permission of the publisher. Any person who does any unauthorized act in relation to this publication may be liable to criminal prosecution and civil claims for damages.
A CIP catalogue record for this book is available from the British Library.
ISBN: 978-1-78243-388-0 in paperback print format
ISBN: 978-1-78243-389-7 in ebook format
Cover design by Estuary English
www.mombooks.com
This book is dedicated to the memory of Connor Sparrowhawk.
May your legacy be lasting change for all young people.
Shine bright, Connor.
#JusticeforLB
http://justiceforlb.org/
CONTENTS
Introduction
CHAPTER ONE Can’t Smile Without You
CHAPTER TWO Dream On
CHAPTER THREE Build
CHAPTER FOUR A Family Affair
CHAPTER FIVE Lesson One
CHAPTER SIX Distant Relatives
CHAPTER SEVEN Scooby Dooby Doo
CHAPTER EIGHT Step Outside
CHAPTER NINE Falling
CHAPTER TEN The Long Climb
CHAPTER ELEVEN Separate Lives
CHAPTER TWELVE The Doctor Will See You Now
CHAPTER THIRTEEN The Best Days of Your Life
CHAPTER FOURTEEN Play Away
CHAPTER FIFTEEN Let’s Add a Label to It
CHAPTER SIXTEEN The School Run
CHAPTER SEVENTEEN Working Nine to Five
CHAPTER EIGHTEEN Legs Eleven
CHAPTER NINETEEN Disco Fever
CHAPTER TWENTY He’s Behind You
CHAPTER TWENTY-ONE School’s Out for Summer
CHAPTER TWENTY-TWO I Want to Tell You a Story
CHAPTER TWENTY-THREE Tomorrow
CHAPTER TWENTY-FOUR My Page
Author’s Note
Acknowledgements
About Connor Sparrowhawk and Justice for LB
About Express CIC
About the Author
‘I would like to travel the world with you twice.
Once, to see the world.
Twice, to see the way you see the world.’
– UNKNOWN
INTRODUCTION
Well, The Boy is a wonder. He’s my wonder. Despite the challenges or maybe even because of them, he’s the very best thing in the world. You could line up every precious diamond in Minecraft and it wouldn’t come close to how precious he is. And, of course, I’m biased. But I want people to give him a chance. To look past some of the seemingly strange, challenging behaviours and the outbursts. To chip away at some of the rock and discover this brilliant, dazzling boy inside just waiting to shine. That’s why I wanted to tell our story. We only really celebrate disability in this world when there is a skill involved. The Paralympics, amazing though they are, celebrate the ability and aptitude of the athletes. Well, sometimes just ‘being’ is enough. And we don’t celebrate just ‘being’ enough. Yet often, it’s in the smallness, in the everydayness of life that real beauty occurs. And that’s what I want all this to be about: a celebration of the everyday, of ‘being’.
MY SON’S NOT RAINMAN BLOG
It was autumn 2011 and I’d been booked as a stand-up comedian for an office party in a London comedy club. From a comedian’s point of view, gigs like this are notoriously difficult, full of people who don’t really want to be there, apart from the one person in the office who had the brainwave in the first place. The rest of the audience are largely drawn by the prospect of a free bar more than any great desire to be entertained. Still, I was a relative newcomer, at the ripe old age of thirty-nine, and I knew very little about which gigs to avoid or what was a good or bad audience. Someone was willing to pay me to get onstage and tell jokes. Cracking. Let’s put what happened next down to naivety.
The thing is, I’d always wanted to talk about my family life when I was onstage. Other comics did it; for many it’s the staple of their sets, talking about their wives, their children, the foibles of everyday life. I knew my home life was different in some ways, not least because The Boy’s mum and I had separated some years earlier, but I could still share it with people couldn’t I? Couldn’t I?
The comic before me went down a storm. Stories of screaming toddlers in supermarkets and his wife’s inability to understand him; they lapped it up. Then it was my turn. I got onstage, opening with some of my old material that I knew worked, just to get them onside and reassure them that I was funny. I got a round of applause for the first joke, the seal of approval every comic hopes for. They were going to be OK. Now seemed the time to hit them with the new stuff.
‘I’m a single dad,’ I said, building in confidence, ‘which basically means you all think I’m a much nicer person than you did twenty seconds ago.’ They laughed at the time, although now it’s written down it doesn’t seem the funniest of gags, I grant you. We’ll put it down to one of those ‘you had to be there’ moments.
‘Why is that?’ I continued, the glare of the stage lights beating down on me. ‘Why when I mention I’m a single father am I meant to be some kind of hero? Single mothers? You’re all benefit-sappers apparently, but single fathers, ooh, we’re all heroes. Next year it’s me and a war veteran fighting it out at the Pride of Britain Awards.’
They were a good audience. Things were going OK. I relaxed a bit more. I started talking about my son, about the things children do, how they drive you mad sometimes. That familiar sound, the laughter of recognition, filled the room and, shallow as it might sound, a little bit of it filled my heart too. It felt good. I was on a roll. I decided to talk about my home life some more. ‘My son,’ I said as one joke finished and the laughter was just ebbing away, ‘he’s autistic.’
Silence.
Time. Stood. Still. Whatever had gone before was suddenly over. Two hundred people just stared at me. The party pooper had put an end to their night. Each blank face looked out at me from the shadows with the same thing written all over it: ‘We’re having a night out. Why are you telling us this?’ I was booked to do twenty minutes that night; I managed seven. I didn’t even have a chance to get to the bit about cerebral palsy. I left the stage dejected, broken. They hadn’t just rejected me as a comedian, they’d rejected my son too. As I snuck out of the back door I could hear the next comic onstage, talking away about parents’ evenings and once again laughter filled the room. I caught the train home, emotions changing with each passing station, from incandescent rage to utter sadness.
I’d like to tell you that by the next day I’d moved on, but it took a fortnight of dwelling on every moment of that night before I eventually picked myself up. And then I cancelled every gig I had booked. (That sounds fairly dramatic – there were only six in the diary. I wasn’t quite ready for prime-time Saturday-night television just yet.) If I couldn’t find a way to talk about the thing that mattered to me most, then I didn’t want to talk about anything at all.
There had to be a way, though. There had to be a way to share our story. Despite my son’s diagnosis, and maybe even sometimes because of it, my world is filled with joy and laughter. That was all I ever wanted to get across. He’d faced discrimination at every point of his life to date. If I could only get people to understand him more, maybe,
just maybe, that might change.
So, in October 2012, nearly a year after that fateful corporate gig and with my son’s age reaching double figures, I started to write a blog, all about him. I referred to him as ‘The Boy’, primarily to save his blushes, but also because that’s what he wanted to be called. And over the next couple of months I began to put together a comedy show about the two of us. I thought if people know the subject matter beforehand, maybe they’d be more open to it. It turned out that there was no ‘maybe’ about it. People read the blog and came to the shows. Lots of people. And they laughed. In some small way, they shared the joy. It seemed they understood The Boy and accepted him more than I ever thought they would.
This book is just another part of that process – another opportunity to share the highs and lows of our lives together. I don’t want it to be just a story about autism; I want it to be about a young boy who happens to have autism – there is a difference. He will forever be more than just his diagnosis. And there’s more here, much more. Fundamentally, I want it to be about every brilliant piece of him. I want it to be about belonging, about fathers and sons, about all our childhoods, about turning on a light when the monsters come out at night, about how if you keep looking for what’s wrong you might just miss the very thing that’s right. I want it to be about laughter, lots of laughter, proper hurting-from-the-belly laughter that comes in waves and then ebbs and flows to live on in memories long after the tears have stopped. I want it to be about love. Bucketloads of the stuff. About discovery, about adventure, about knights slaying dragons, about superheroes, about victory for each and every little man in this world.
And long after I’ve left this world, I want it to be a book for you, son. Although I’ve shared so much of it with you over the months I’ve been writing it, my biggest hope is that one day in the future you might sit down in a quiet moment, turn to the first page and read it all from cover to cover. Know you are loved, precious boy.
This is our story.
CHAPTER ONE
Can’t Smile Without You
Today would have been my dad’s birthday. He would have been seventy-seven years old. It’s hard to comprehend that big, strong man from my childhood ever being such an age. And it’s even harder to comprehend that it’s been twenty-three years since all his vibrant strength and happiness was extinguished from the world.
I often think about what Dad, if he was able to drop in for an hour, would make of the world nowadays. How alien would it seem to him? The Internet. Twenty-four-hour television. That roundabout near where we used to live which they’ve replaced with traffic lights.
And, most of all, I wonder what he’d make of his grandson. I know he’d love him dearly, but would he understand him? He probably wouldn’t know how to spell the word autism, let alone come to terms with it. And then there’s the strangest thing of all, that the two people who have played the biggest part in shaping my life are the two people who will never ever meet.
It was a source of regret from the moment he was born that The Boy would never know his granddad. He’d never know what it felt like to be carried on the shoulders of a 5-foot 10-inch giant with a headful of hair gel, surrounded by the potent odour of Old Spice aftershave and Silk Cut cigarettes. And then one day it occurred to me, that although the two of them will never meet in the physical sense, Granddad is still never very far away.
Son, you know how Dad beeps the car horn and then waves at strangers to see if they wave back? That was Granddad’s game. You know when Dad told you that his scar from his tuberculosis jab was where he got shot fighting in the war? Granddad too. The whistling, listening to Frank Sinatra, making you say ‘Thank you’ when you get down from the dinner table, it’s all him. The more I think about it, the more I realize, he’s everywhere, in everything I do.
MY SON’S NOT RAINMAN BLOG
There’s such an urge to start this story with The Boy’s birth, as if the world only began with him and everything that came before was just incidental. But the truth is, this story started way, way before he was even thought of. Before I’d even taken my first step, before anyone in the Williams family had even begun to imagine the horror of one of their offspring upping sticks from the north-west of England to take root down south, in London. Of all places.
It starts with you, Dad.
I don’t have many early memories of him. If I’m honest, he wasn’t around a great deal when we were growing up. My mum’s family ran a catering firm and part of his reward for marrying her was he got to work for them, six days and nights a week, catering for Freemasons’ halls, weddings, funerals and everything in between. The work was nothing if not varied. I used to go along and help out from the age of thirteen for the princely sum of five pounds. One evening would be a banquet at the town hall, the next would be a traditional hot pot dinner for a Working Men’s Club with ladies getting their boobies out and dancing on the stage. I thought it was the best job in the world.
There are certain things that will always evoke memories of Dad: the sight of those small brown wage envelopes you can buy in the pound shop, the same ones that used to magically appear on the mantelpiece behind the carriage clock every Thursday without fail; the sound of a Ford Transit van pulling into a driveway in second gear when it should really be in first but the driver’s too tired to shift gear; the clicking sound of the ignition button on a Calor Gas heater first thing on a cold winter morning. They all meant one thing: Dad’s home.
It sounds like a horrible way to describe someone, but he wasn’t the cleverest of men, I remember that much; although I do recall him telling us proudly that he passed the exam to go to grammar school. Mind you, he also told us that he danced with Sammy Davis Jnr and dated Tina Turner, so you can take that with a pinch of salt. He was, however, a born entertainer, a showman through and through, the boy who never grew up. If ever there had been a demand for a prime-time TV show where someone whistled Johnny Mathis songs while extolling the virtues of brushing your shoes (‘Don’t forget the heel! You can always spot a lazy bastard as they only polish the front’), he’d have made top billing. But if there’s one thing I’ve learnt over the years, it’s that dads-who-never-grow-up make for pretty rubbish husbands.
I was one of four boys. With my dad in the mix, in many ways my poor mum had a fifth child on her hands. And how hurtful it must have been sometimes, when she did everything in terms of bringing us up, to see us get so excited when Dad eventually had a night off. Mr Fun Time was in town.
I remember going on a rare day trip when I was about nine years of age. The whole family went to the Alton Towers theme park. It was so long ago that it was pretty much just a swing and a roundabout in those days. I think the slide might have opened the year after. In fact, it was that long ago that rather than paying at a kiosk (for which you had to wait most of the day) you paid as you drove into the car park. There was a lady sitting in a hut and you’d pull up alongside her and then she’d count the number of heads in the car – four children, two adults, you’d pay the money and then go and park.
I still remember Dad taking the Alton Towers’ exit off the M6 motorway in our faithful Nissan Bluebird, then pulling into a lay-by around six miles away. We’d talked about this moment, like we’d always talked about doing a runner in the Beefeater restaurant when the bill arrived. We never thought he was going to go through with it. But when he reached down beside his driver’s seat and pulled a lever, the noise of the boot unlocking confirmed our worst fears.
You just trust your dad, don’t you? Three of us climbed into the car boot like trusting lambs being led to slaughter. We knew no different. Then Dad placed a blanket over the top of us – ‘just in case of spot-checks, lads’ – closed the boot and drove the remaining six miles to Alton Towers. He pulled up at the hut with the lady inside; she peered inside the car – two adults and one child. Dad dutifully paid, then parked at the far side of the car park.
I remember that moment so clearly, when he opened the boot. I re
member my eyes adjusting to the daylight and the sensation of the hallucinations from the four-star petrol fumes wearing off. And I remember his big, grinning face bearing down on us. He had a look on his face like he’d just smuggled his family across the Gaza Strip.
‘Victory for the little man, boys,’ he beamed, ‘victory for the little man.’
I was nineteen years old when that big, brilliant face of his left us forever.
He’d been ill for most of my teenage life; the years of drinking and smoking had taken their toll. First heart disease and then, eventually, cancer. He came home to die, that was his last wish: to ‘put all his affairs in order’ I think is the correct term. All that really meant was confessing to my mum that he’d drunk the vodka in the drinks cabinet and replaced it with water so she wouldn’t know, and to tell the vicar that he ‘didn’t want any of that morbid shit’ at his funeral. And I’d like to tell you that those final days were a profound, life-changing period in which serenity washed over all our lives, just like in the movies. But in truth they were hideous affairs, when the morphine levels never seemed quite right and his indomitable spirit raged and fought against the failing light. Eventually, eventually, in the dead of night, when all was quiet…
Reading this back, it seems a strange way to start a book, to condense a man’s life and death into the first chapter. But my dad had to be the beginning of the story. His sense of humour, his playfulness, they run through my life like the words in a stick of rock. He shaped the father I’ve become. I don’t think as children we ever really know our parents as people – living, breathing people. We just see them as invincible. He was the man who taught me that the real superheroes in this world are often living among us. It was only years later, when I looked back, that I realized he was fallible too. He never thought he was good enough or smart enough.
I don’t have much of a memory for dates and times; birthdays, anniversaries, they merge into one. I couldn’t tell you where I was when John Lennon died or who won the 2002 World Cup. I can, however, tell you the two dates that have irrevocably changed my life. On 16 October 1991, I said goodnight to my dad for the last time. And then 3,825 days later, on 6 April 2002, I said hello to my son for the first time. These are the two people who have shaped my life, who will never, ever meet, linked only by my own fallible memory and a propensity for weight gain that I’m blaming firmly on genetics.