‘You should write an Edinburgh show about you and your son,’ one comic said. ‘Take it to the Fringe. There isn’t the pressure of a club night as you have fifty minutes, you have more time to tell your story and it should be told. Do it.’
Then the headline comic that night said, ‘Come on, do it. You could call it “My Son’s Not Rainman”.’ Somewhere, a light went on.
The next day I registered the domain name. I asked an old friend if she’d direct the show. She said ‘Yes’. It was now April and I was looking at heading to Edinburgh in August the following year. My friend booked a slot at a theatre in London for October previews, six months away. All I had to do was write the show.
At the same time I had a domain name just sitting there doing nothing. I thought I’d start up a blog about us, tell people about the highlights and lowlights. But mainly it was to share some of the brilliantly funny aspects of our lives. I wasn’t completely selfless in all this – my reasons were as much about the two of us as they were about the ‘greater good’. If there was one thing the years in therapy taught me (no matter how much the cynic in me tried to fight it), it was that focusing on the positive can only be a good thing. This was as much about us as it was everyone else.
After two months of blogging I had a handful of followers. Three of them were my brothers. Then slowly, slowly, things started to pick up. I found I enjoyed writing, something I’d not done since leaving school. After four months, I was elated when my visitor count reached double figures.
October crept up quicker than I’d hoped, as did the date of the first preview of the show. At that point it was far from ready. I’d discovered that writing a comedy around the subject was trickier than I first thought, especially as I was on the outside looking in. I suppose that was the problem – I never really wanted it to be ‘about autism’ or ‘about disability’ – I just wanted it to be ‘about us’, of which the rest was only a part. The fear that I would be seen to be mocking people terrified me. Ours was very much a story about acceptance.
The first previews came and went. They weren’t entirely successful. ‘Needs more jokes,’ my friends said helpfully. And despite my best efforts, some parts of the show felt cruel, exactly what I’d been trying to avoid; other bits were schmaltzy where I’d over-egged the ‘I love my son and this comes from a good place’ angle.
Just after the Christmas period, I received a message from a journalist who worked for the disability section of the BBC website. She’d been reading the blog for a while, and had tried to come to the preview show earlier. ‘Will you write us a guest blog? We’re looking for something around parenting a child with disabilities in half-term.’
I was flattered and, of course, I said I would. I wrote about me and The Boy going ten-pin bowling. On the Friday when it was due to go online, I received a message from the journalist. ‘Hi John, your article has been selected for the main BBC News website. I’m not sure when publication will be.’ I wasn’t entirely sure from the tone of the message if this was a good thing or not, so I just had to wait and see.
The next day I woke with my phone going crazy. I’m not sure why the article became as successful as it did. Maybe it was because someone had decided to use the attention-grabbing headline ‘Fortnight of fear’ (not a decision I’d have made), but there it was, online. It became the second most-read article on the BBC website that day, with just under one million impressions. In one day alone my own blog suddenly had 340,000 hits.
Then the emails started arriving – other parents reading the blog and recognizing their own child, people with no link to autism at all who wanted to know more, autistics themselves sharing their own stories. So many emails telling me what an amazing, incredible son I had, and how incredibly proud I should be.
I’m not going to go on and on about the show and blog for fear of being an unbearable bore, but the impact of people recognizing just what a wonderful, brilliant being The Boy is, can never be underestimated. When you’ve spent your life with people constantly finding the negative and never looking past it to see just what’s inside, the sudden outpouring by people who recognized his talents, his humour, his heart and his very soul… let’s just say it was, and has continued to be, incredibly special.
The show went well at the Edinburgh Fringe. Since then I’ve performed it up and down the land, in comedy clubs and at other events – the National Autistic Society’s conference, head teachers’ conferences, and so on. An excerpt of the show recorded for Radio 4 was selected by the BBC as one of their ‘magic moments of radio 2015’. The Boy who took so long to find his voice was finally being heard.
And I suppose this book is the culmination of it all. It’s funny, I was completing a form the other day for school and I needed to add my occupation. I had to think about it. What am I now? Am I a comedian? A writer? Instead I opted for that horrible term, ‘carer’. But really, I’m not that either. I’m just Dad. And there’s no better job in the world.
CHAPTER TWENTY-THREE
Tomorrow
Our weekend away in a caravan was a great break for both of us. Sometimes it takes going away for you to recognize the changes that go unnoticed day to day. Like when I visit my mum who I haven’t seen for four months and she points straight away to that seven pound weight gain I thought I’d been quietly getting away with.
And so it was with revisiting a caravan park we hadn’t been to for a while. I’d forgotten the previous battles in getting out of the swimming pool, the altercations in the play area and the screams echoing around the bowling alley. For the most part, this time they were absent.
Although the change in behaviour was delightful to see, I’m still unsure if the cause is a good thing. It was always social interactions with other children that created the problems – on the dance floor in the evening, across a ball pit – that’s where the difficulties came. When this little boy, so desperate to make friends and interact, didn’t have the first clue how to do any of it. While other parents sat chatting and drinking he was the child I never dared take my eye off. Hearing a scream from the ball pit and seeing a distressed toddler fleeing the scene clutching their wound and then discovering the culprit alone inside, confused, scared and mystified, having got it all wrong again.
But this time there were no social interactions to worry about. And that’s the bit I’m not sure is good. Yes, it made for a less stressful time, but was the lack of attempting social interaction just his age or because he’s learnt that there’s no point trying to get along with people because it’s all just too hard and confusing?
Either way, the two of us still had a great time, revisiting old haunts. We sat in the same seats we always sat in when we went for dinner. The Boy told me which machines were new and which had been moved in the arcades, and he pointed out the caravan we stayed in three years ago even though it wasn’t in its original spot and there were three hundred other caravans in that park which looked exactly the same to me.
He had jobs to do this holiday too. Chores. He likes the responsibility, the sense of being in charge. ‘I’m getting a big boy now,’ became one of his favourite phrases as he turned the lights off or locked the caravan each time we went out (granted, the time we went out all day it might have been more secure if the door had actually been closed, but we’ll let it go).
And he’d never seemed older than when we went for dinner on the Friday evening. Clutching his pack of playing cards he even sat alone while I went to the bar to order. Two adult meals. The kids’ menu was always going to be out of bounds since my own flashbacks of sitting in a Little Chef while my dad tried to convince a waitress that the fifteen-year-old and two thirteen-year-olds sitting in front of her were nine years of age. Maybe if my elder brother had shaved that morning we might have got away with it.
After dinner and his favourite card game (for the record, I won), The Boy was ready to head back to the caravan. No bingo, no playing with other children this time. And, as we went to leave, from out of nowhere cam
e the highlight of the holiday. ‘Now I’m a big boy,’ he said as he watched me putting the cards back in their case, ‘can I have my own packet of mints?’
Oh, son, just writing that line makes me smile more than anything. I always carry a packet of mints with me. I’m not even sure why, it’s just something my dad always did, especially in the latter years when he took to stopping smoking once a fortnight. Other families pass on heirlooms and relics across the generations. Ours pass on mints. And, as we walked into the shop to buy the confectionery of choice, it felt like his coming of age ceremony, his very own bar mitzvah.
And if you were there that night, you might well have witnessed the momentous occasion. At 7.23 p.m. on Friday, 28 March, in a caravan park in south-east England, a young man walked out of the corner shop and silently slipped a packet of Trebor Extra Strong Mints into his pocket. Turning towards the setting sun, he headed for home with the caravan key in his hand and the whole world at his feet.
MY SON’S NOT RAINMAN BLOG
It’s the night before The Boy’s thirteenth birthday. And this is where our story ends. In a few hours’ time, The Boy becomes The Teen and it’s such a cliché but I can’t believe how the time has gone. People always say that about their children – one minute they’re born, then they’re leaving home and their childhood has gone in the blink of an eye. But if I’m honest, for years that wasn’t the case. Time stood still for far too long and there were days in it all that I thought would never end. It’s fair to say we’ve both been on a journey these past years.
He’s taller than his mum now. I buy the same size socks for both of us. He borrowed a T-shirt of mine the other day. Mind you, we still watch far too much Power Rangers; that one will be a work in progress for some time to come. For so long, I could never picture him as an adult. I couldn’t contemplate this child, this young boy, as a grown man. But I can see it now. And rather than fill me with fear and dread as it used to, it excites me. I have glimpses of the kind of adult he might become. The anger still needs work, there’s no doubt. And the anxiety too, I wish that would bugger off at some point. But the kindness, the gentleness, the sense of humour…
Oh son, what a fine man you are growing up to be.
I still think of my own dad nowadays too. Maybe I understand him more, now I’ve been a parent myself for a few years. And I suppose my view of him is a bit more honest than it used to be. He will forever be on a pedestal because he was My Dad and because I had a love for him that makes my heart sing and drowns my eyes with tears whenever I think of his big, brilliant face. He wasn’t perfect, though. And I’m slowly realizing that not being perfect, that’s OK too. I see him in The Boy more and more. The way The Boy throws his head back and laughs. The way he does that funny thing with his lips when he’s concentrating. Dad’s never far away.
And so it’s time to hand things over to The Boy. The story ends here, because it isn’t my story to tell anymore. It’s his. When I first came up with the idea of this book, I was unsure of the journey it would take us on. Yet the one bit I was clear about was the ending; that was never going to change. This is how I described the last chapter:
‘The Boy. The final word will go to him. I don’t know what this chapter will be. It could be a sentence, a paragraph, a page. It might even just be a drawing. But it will be his.’
And so, it’s over to you son. Be brilliant. Dad x
CHAPTER TWENTY-FOUR
My Page
The end
(of the beginning)
AUTHOR’S NOTE
The use of language can often be a contentious issue, particularly when you are attempting to describe a condition that affects so many people in so many different ways. It’s 2016 as I write this but, should you be picking this book up twenty years from now, I am sure there is terminology used that makes you shudder; phrases that have long been consigned to history. Even in the few years I have been writing on the subject of autism, there is much that has changed – just one example, is The Boy someone ‘with autism’ or is he ‘autistic’? I’ve largely chosen the latter, as I feel that is what he is most comfortable with. And that has been my benchmark throughout the book – I have attempted to use language that I feel he best identifies with, but I recognize that may not be the same for everyone.
ACKNOWLEDGEMENTS
None of this would have been possible without the support of a huge number of people to whom I owe a very heartfelt thank you.
To the wonderful comedian Mary Bourke, the headliner who nonchalantly said to me that night in the green room, ‘You should call it “My Son’s Not Rainman”.’ The rest, as they say…
To Anna Crilly, my lovely friend who started it all by booking the theatre, agreeing to direct the show and making sure I actually turned up on the night.
To Vicki Salter from my literary agent, Barbara Levy, who contacted me after seeing me perform one night in a working men’s club on the south coast of England. She asked if I’d considered turning the blog into a book. Until that point, I hadn’t. The kindness, support and wisdom from her and Barbara have been invaluable.
To my ever patient publisher, Hugh Barker at Michael O’Mara Books, who I instantly warmed to because he took me out for a cup of coffee at our initial meeting as he’d finally got his first-ever company credit card and wanted to test it out.
To Fiona Slater, my editor. Together with Hugh, she has often taken on the role of therapist. Her guidance, understanding and genuine consideration for what is best for The Boy is the only reason this book exists at all.
To my dear family and friends, who have fielded endless panicking phone calls over many months, if not years. In particular to Nena, Dave, Greg, Kuljit, Saskia, Anna, Bethany, Annette and Tracey. My world would be a far duller place without each of you in it and I promise I will never mention the bloody book again.
And finally to Connor, Joe, Ted, George, Molly, Olly, Asha and Jacob. I can’t even begin to tell each of you how much joy you have brought into our world. Thank you for being the finest cousins and friends any little boy could hope for.
ABOUT CONNOR SPARROWHAWK AND JUSTICE FOR LB
This book is dedicated to the memory of Connor Sparrowhawk. Connor was a fit and healthy young man who loved buses, London, the Eddie Stobart haulage company and speaking his mind. He lived in Oxford, England, and was in the sixth form of a local special school. He was diagnosed with autism, learning disabilities and epilepsy.
Connor’s mum, Sara, created a blog online in which he was affectionately known as Laughing Boy (LB). It was through this blog and her wonderful writing that I, and countless others, felt as if we got to know LB in some small way. LB’s mood changed as he approached adulthood and on 19 March 2013 he was admitted to hospital, the STATT (Short Term Assessment and Treatment Team) inpatient unit run by Southern Health NHS Foundation Trust.
LB drowned in the bath in the inpatient unit on 4 July 2013. An entirely preventable death. Since Connor’s death, his family and a small team of incredibly dedicated supporters have campaigned endlessly under the Justice for LB banner, not only to ensure a full investigation took place into his death, but to further improve the life opportunities of all people with learning disabilities.
In October 2015 the jury at Connor’s inquest concluded that neglect and very serious failings contributed to his death. Finally, in June 2016, Southern Health NHS Foundation Trust accepted responsibility for the death of Connor Sparrowhawk.
The Justice for LB campaign continues to push for further assurances that what happened to Connor will not happen to others. They also want to see proper informed debate about the status of learning disabled adults as full citizens in the UK, involving and led by learning disabled people and their families.
justiceforlb.org
www.facebook.com/justiceforLB
www.twitter.com/justiceforLB
ABOUT EXPRESS CIC
In 2013 I was delighted to become patron of Express CIC. They are a small, not-for-profit organization bas
ed in south-west London. Their goal is to provide a café/hub where young people with autism and their families/carers can feel welcome and secure in their local community. A place for everyone.
Their vision is to offer employment opportunities for both autistic people and their carers and to become a thriving centre at the heart of the community. A place where sensory needs are taken into account, combined with quiet zones and play areas. It’s very early days for them and, although I am increasingly frustrated and bamboozled on their behalf by the endless bureaucracy that seems to stand in the way of brilliant community projects, I’m genuinely thrilled to be involved and I have no doubt that with the passion and drive of those behind it, Express will thrive and prosper as it should. In the three years since forming, they have already firmly established themselves as a lifeline to many families, running art therapy classes, parent support groups, a newly formed dad’s group and groups for siblings too.
Five per cent of all author profits from this book will go to Express CIC.
expresscic.org.uk
www.facebook.com/expresscic
www.twitter.com/expresscic
ABOUT THE AUTHOR
John Williams has had far too many jobs to list, ranging from working on the factory floor of a chicken processing plant to being a graphic designer for a City firm. He has worked as a comedian on and off for around twelve years, fitting it in around childcare. As a public speaker he has appeared at national conferences and events throughout the UK and Europe, and featured extensively on BBC Radio 4. My Son’s Not Rainman is his first book, and you can find his blog at www.mysonsnotrainman.com. He is appalling at writing about himself in the third person, but is brilliant at dance-offs.