I hesitated. Largely because, dear reader, much like you, I knew what was coming. By this point the woman in the hut was leaning out to watch what was happening. There was now even a small crowd gathered along the promenade – all keen to see how exactly The Boy in the wheelchair was going to do this. We had little option but to smile gracefully and I wheeled The Boy up to the tee-off line.
The minute we were there, he put the brakes on his wheelchair and leapt out of it. He even gave his legs a little shake from having been sitting for so long. Then, oblivious to the stares around him, he lined up his shot. The club struck the ball.
‘Yesss!’ he called out. ‘Hole in one!’ as his putt sank perfectly into the hole.
And if that was the end of the story, that would have been almost OK. But then… then The Boy ran the twenty metres to the hole. Removed the flag, bent down, collected his ball, placed the flag back and then dashed back. Sat back in his wheelchair and took the brakes off again.
At least when the guy in Little Britain did something similar he had the decency to do it behind his carer’s back. Because all that was left for me to do was to smile to the watching crowd and bemused family and push The Boy onwards to hole number two.
‘Thank you very much!’ I called out over my shoulder as we brazenly headed off, waving with one hand above my head.
‘T-H-A-N-K-Y-O-O-O-U-U-U-U-U!’
CHAPTER TWENTY-ONE
School’s Out for Summer
We’ve been out for the day. In the rain. We’ve been for a trip into central London or the Doctor Who Studios, as The Boy seems to know it.
We went past the Houses of Parliament. I tried to explain to him that it was the centre of government. No, it wasn’t. It was where the Slitheen spaceship hit in episode four of the first series. Oh, yes, of course it was.
I tried to educate him, honestly I did. ‘OK, then, do you know why it’s called Big Ben?’ I asked.
‘Easy. Because it’s big and it’s called Ben. Stupid.’
Ah, sod it, let’s do what everyone does when they come to visit one of the most famous cities in the world. Let’s go to the arcades.
The Boy loves the arcades. In particular, the 2p Pusher-Machine-Things. I don’t know what their proper name is, but you put 2p in and try to win… 2p. That makes perfect sense to him.
Now anyone else would just walk into the arcade and start playing. Not us. On entering, The Boy will case the joint. He will walk around the entire arcade five or six times to select the 2p Pusher-Machine-Thing of choice. Circling. Studying. There’s a science behind it that I don’t know and that he won’t tell me. This entire exercise must be done in silence. Eventually, he will home in on one machine. Now, that machine could have upwards of thirty slots to choose from. Each one needs to be studied. The circling continues around this one machine. The lie of the two-pence pieces is examined closely. He’ll pause, as if to select a slot, only to move on again. He needs to find the exact pile of coins that his coin will land on and cause the rest to become dislodged and fall down the chute. This whole process takes around thirty minutes, accompanied by excitement and tension on his face – he might be able to win a slightly bigger handful of 2p’s to go with the 2p already in his hand.
Eventually, the slot is chosen. The silence is broken. With a gesture as significant as the white smoke pouring from the Vatican, The Boy lowers his hand to touch the glass. Then he mutters the words I’ve been waiting for: ‘It’s gonna pay.’
And every time, without fail, it does. We were in the arcades for two hours and thirty-five minutes, at the same machine, the same slot. The Boy who, according to the educational psychologist, had an attention span of approximately ninety seconds. And in that time he turned £0.16 into £3.44.
Kiss my arse, Dustin Hoffman, with your roulette tables and card counting. Two-Pence-Pusher-Machine-Things are where it’s at.
MY SON’S NOT RAINMAN BLOG
I can’t pretend that following the enlightened moment at the school disco life suddenly became a breeze. It didn’t, the same old problems still reared their ugly heads, but I suppose they no longer felt insurmountable; that was the difference.
School was still a huge difficulty in our lives and would remain so for years to come. The same, familiar pattern started again – OK at first, a few concerns and then a long, slow painful spiral towards the inevitable.
Even though we were in a special school, the telephone calls home were becoming more frequent. I had to leave the job in the care home that had meant so much to me. Even on days when I went to collect The Boy at normal home time, invariably he was out of the classroom, either in the playground refusing to come in or sitting with a member of the admin staff in one of the offices. Things just weren’t working out.
‘We’re a general special school. We feel that your son would be better suited to a specialist autism provision.’
Sometimes the system can be bloody cruel.
The Boy was back home with me once more. After another few months of ‘home tutoring’ (oh, I’m sure the school inspectors would have been ever so impressed with Dad’s curriculum) and me sending my traditional pain-in-the-arse emails chasing the local authority, another school was found in a neighbouring borough. (I’ve made it all sound so simple – it wasn’t. Finding the right place involved eight months of endless bureaucracy, waiting for replies to emails that never came, having assessments, reading reports and so on. I can’t bring myself to write about it because, frankly, it frustrates me beyond belief even thinking back to that time, knowing that every day an email was ignored or a deadline was missed was another day of my child’s education that we would never, ever get back.)
The new school described itself as having specialist autism provision. Me and Mum were both incredibly nervous – this was now school number four and we weren’t even out of primary. It had to work.
The Boy went for an assessment for a week to see how he settled. The assessment period was then extended to two weeks as they wanted to be absolutely certain they could meet his needs. I’d like to say that at the end of that period came a resounding ‘Yes’, but it was more of a ‘We think so’. Beggars can’t be choosers and all that… The cost to the local authority for this education? It was £43,000 a year. To give you some idea of just how expensive special-needs education is, at the time of writing in 2016 the exclusive Harrow school comes in at a mere snip of £37,350 – including boarding and laundry.
Things went fairly smoothly for the two-week assessment period. Then on the Monday, his official first day, The Boy calculated that the time had come for an attack. The element of surprise. Now was the time to bring out the big guns. This enemy had underestimated him. It was time for Shock-and-Awe.
By all accounts, it was apparently an impressive display. He pulled out everything in his arsenal. Kicking, punching, swearing, biting, spitting – he bombarded them with the lot. Wave after wave, barrage after barrage. Oh, yes, he’d show them who the superpower to be reckoned with was.
By the time I arrived to collect him at 3.30 p.m. the battle was over. I was called into the office for a full debriefing before heading off to assess the battleground and collect the wounded. As I opened the classroom door I was unsure what to expect. Tired and helpless, The Boy was flopped over a chair. The school uniform that had looked so new and fresh just hours earlier now hung from him like the battle fatigues of a veteran. He’d given everything. There was no more fight in him.
And standing next to him, the enemy. Mr Teacher.
‘We made some wrong choices today, Dad,’ Mr Teacher said, beaming away. ‘But we’ve spoken about it and we’re ready for a much better day tomorrow. I remember when I started at this school. And I was scared on my first day, too.’
And despite all my concerns and reservations, his smile told me that – for the time being – maybe we were in the right place. Far from being the enemy, maybe The Boy had met an ally. Someone who understood. Things might just be OK.
As we trundl
ed out of the classroom with the remains of a smashed Doctor Who lunchbox in one hand and a bandaged home-school diary in the other, The Boy turned to me. ‘I really like my new school, Daddy.’
Fingers crossed, son. Fingers crossed.
The official week one at the new school came to an end. It was an up-and-down week – a few triumphs scattered with ‘some challenges’. Only one phone call home on Wednesday: result.
Then came Friday. My phone rang at about 1.00 p.m. It was Mr Teacher.
‘I phone you when things are going wrong, so I thought I’d phone you when things are going right. He’s having a brilliant day. No hitting, no biting, he’s stayed in class all day, I’m really proud of him.’
Later that day when I went to collect The Boy there was still a part of me thinking how premature that call might have been. Old habits and all that… As I pulled up at the school The Boy came out of the gate. And there on his jumper was a sticker. ‘Gold award’. And the romantic in me likes to think he was walking a little bit taller too. He got into the car and I read his home-school diary. At assembly this week he won the award for ‘making good choices and controlling his actions.’ I asked him if it made him feel happy. He started stammering, looking for the words that never seem to come when we talk about emotions of any kind. After an age, he blurted out, ‘It made me feel like I was crying inside.’ And we both just sat, silent, not sure who was more amazed that these words had tumbled out of him.
It was still early days, but Mr Teacher taught Dad a valuable lesson too that Friday. He taught him to believe in his son a bit more. And that night when The Boy went to bed I did what I’d seen other parents do in their houses. I stuck his gold award in pride of place on the fridge door.
And Dad cried a little bit too. On the inside, of course.
CHAPTER TWENTY-TWO
I Want to Tell You a Story
Last week at school was sports day. I hate sports day. In fact, there’s one word too many in that sentence. I hate sports.
Maybe hate is too strong a word… I just don’t see the point in it. Sports days are always around the same time as Wimbledon and that’s another event that’s largely escaped me. I try to care, really I do, but ultimately it’s just a man or woman hitting a ball into a box painted on the floor with slightly more accuracy than some other man or woman hitting the ball into another box painted on the same floor. And then they sit down and drink some squash. I just don’t get it.
I suppose it all comes down to whether or not you are a competitive person. I’m not. I couldn’t support a football team because if my team won I’d feel sorry for the team that lost because I’d remember how that felt when it happened to me. I’d just want every result to be a draw and then everyone would be happy.
It’s a bit like that age-old cliché that PE teachers have been rolling out for years – it isn’t the winning that counts, it’s the taking part. But when you were at school they never meant it. They couldn’t hide the disappointment written all over their faces as you once more failed to stop the ball from crossing the goalmouth on a wet, cold, winter’s day. It was never about the taking part.
So, sports day at The Boy’s school.
The Boy took part in a few races. Even the running races. The Boy who I told you was now taking his wheelchair to school ran the 50 metres and the 100 metres. Don’t forget now, consistently inconsistent… He came second in both races. And all right, it was out of three. And the boy who was third hadn’t really grasped the concept of the race – but none of that mattered in the slightest.
Then came the long jump. Or to give it its full title, Walking Through A Sandpit. There might not have been much jumping, but that’s what made the day so special – none of it mattered, each competitor was cheered on like an Olympian by parents and teachers alike.
Then the javelin. Or Chucking a Foam Dart in a Field. The Boy excelled at this. He was offered three attempts, but he decided one was enough. You can have too much of a good thing.
Then, the final event. The high jump. Or Throwing Yourself Onto a Mattress. Like so many of the other competitors, The Boy’s style was slightly less than conventional. But you couldn’t doubt his commitment as he flung himself onto that mattress like a stunt man in a Hollywood blockbuster.
It was a brilliant day, marred only by one thing. Parents’ race. I can’t tell you who won, as I was hiding behind a gazebo at the time. It’s true what they say, it’s the taking part that matters…
MY SON’S NOT RAINMAN BLOG
And so I suppose I’d finally made my peace with The Boy’s diagnosis, some years after it happened. Even now it bothers me sometimes, often creeping up unawares when I watch him struggle with some aspect of his life, but for the most part now there is acceptance. Largely because I recognize that I can never expect him to accept it and lead a happy adult life if those around him don’t. We’ve tried talking about what it means to be autistic, about having a brain that is just wired differently, but for now the understanding isn’t there. We go to a special school because we have a problem with our legs and that’s OK. The rest will come when the time is ready.
Gradually, I’d finally begun to recognize the importance of doing things for me, too. As carers we invariably put our own needs to one side, seemingly flagellating ourselves for the greater good. With hindsight I’d become quite lonely, isolated even – my entire life was spent sat waiting for the school to ring or to take my shift on watch duty in the playground. I began to realize that the best way to do something for us was to do something for me.
Many years ago, just before I became ill, I dabbled in stand-up comedy. I did it for a few months and it turned out I was quite good at it. I’d only done a handful of gigs and I found myself in the final of a national competition to find the best new comedian in the UK. On the night itself I died on my arse. Horrifically. And then I became ill, and then autism and all the rest of it got in the way. The stand-up just petered out.
There was something about stand-up comedy, though, that got under my skin. I’m not sure what it was, whether it was the risk involved or the buzz – when it goes well there’s nothing better, but when it goes bad… it goes bad. I guess that’s the thrill of it – over time I may well get better at it, but the prospect of dying onstage is never far away.
I quietly returned to stand-up over the course of a few months. Small gigs in London, ten minutes here, fifteen minutes there, while The Boy was at his mum’s house. I enjoyed it.
I had heard comedians talk of ‘finding their voice’ onstage – tapping into that unique viewpoint of the world that often makes the best comedians who they are. I’m not entirely sure I’ve ever really tapped into mine, but I know I felt far more comfortable onstage than I had done years before. Maybe I was older or wiser or maybe I cared a little bit less about what people thought of me and that freed me up a bit. Or maybe I just enjoyed being out of the house sometimes.
For me, the best comedians have always had a truth to their material. Often there will be exaggeration or embellishment and the character onstage isn’t quite the same person offstage, no matter how convincing they might appear, but their viewpoint is rooted in a truth about how they see the world. I talked about The Boy in my stand-up. Most of it was largely about our life together – the foibles of family life. The disability, I left that out, but I always felt like I wasn’t being true to The Boy for not including it, like I was editing our lives to make them more palatable to people.
And then came that fateful gig in central London, the one in which I mentioned his autism, as I told you at the beginning of the book. I’d like to take you back to that moment again because I really didn’t know at the time the impact that night would have on our lives.
I can’t remember too much about the gig itself. I remember the compere doing a great job, the comic before me ripping up the room and me backstage thinking they sounded like a lovely, up-for-it crowd. I was going to do my usual stuff, except this time I wasn’t going to hide his autism.
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What I remember best is the utter absence of laughter from the one hundred and thirty faces staring back at me. I said before that there was silence in the room. That’s not true, of course. I could hear the sound of the barman at the far side squirting Diet Pepsi into a glass, the faint hum of the hand dryer from the far-off toilet filling the room where the laughter should have been. And then the quandary. I was four minutes in and booked for a twenty-minute set. Should I front this out or limp off to the side admitting defeat and facing the wrath of the promoter? I made it to eight painful minutes, I’d won back a table at the front, but the rest of the room either sat in awkwardness or talked among themselves. To this day I’m not sure which is worse as a comic – an attentive but silent audience or the hum of conversation while I’m just ignored completely.
I headed backstage – not really making eye-contact with the other comics – just in time to hear the compere getting laughs from the room once more.
After an awkward handshake with the promoter, I went to leave, the voice in my head telling me over and over that it was OK and that I’d never see any of those people again. And then I discovered the only way out of the venue was back through the room I’d just died in. I swallowed my pride and went for it.
I made it through the room relatively unscathed, save for the odd look, and saw freedom in the shape of the exit ahead of me. As I got there, a man walked back in from the toilets. He held the door open for me. ‘That shit you spoke about up there, was that stuff true?’ he said to me as I headed out.
I nodded back, almost apologetically.
‘F*cking hell,’ he said, almost laughing to himself, shaking his head.
You know the rest: I headed home, trying to convince myself that it didn’t matter, their reaction was nothing personal about The Boy. I’d pick myself up and carry on. Everything was OK.
A week later, having cancelled almost all the gigs in the diary, there was just one more I had to do, because it was too late to pull out. I was compering; it was a lovely room with a lovely bunch of comics and it felt like the perfect antidote to the car crash a week earlier. I sat and chatted with the other acts in the green room, telling them about what had happened the week before.