A wheelchair. But I could carry him on my shoulders. That’s what we’d always done. And besides, I thought this was mild? Mild means a couple of ibuprofen and a lie-down in a darkened room for a few hours. Mild means not quite feeling yourself for a few days. It doesn’t mean wheelchairs and mobility issues for the rest of your life. That’s not mild.
Over the weeks that followed, my anger seemed to grow inside me. Anger that The Boy had had to wait so long for a diagnosis; anger that, as parents, we once again hadn’t pushed enough; anger at myself for the number of times I didn’t listen when The Boy refused to move any more, not realizing that it was never defiance but pain that stopped him in his tracks. I played back the previous paediatrician’s appointment and the advice to ‘sort his behaviour out first’. The ugly reality of his so-called ‘behaviour issues’ was that they prevented getting the very answers that might have curbed those same behaviours in the first place. An earlier diagnosis wouldn’t have cured him, I’m not naive enough to suggest that. But it might have helped with his discomfort and his pain.
Why didn’t I push enough? The self-flagellation may be wearing a little thin now, but it’s something I’ve felt guilty about throughout The Boy’s life. Schools that were failing him, healthcare professionals who didn’t listen, support that was promised but never given – I should have pushed more. As parents we really can’t win sometimes – if we push and push for everything then we are seen as ‘very difficult’ and services are withheld as a result; if we don’t push enough then we don’t get the services our children deserve. It’s a shitty game with no winners.
For the most part, it was never a doctor or teacher or physiotherapist I really wanted to see. I think it was a clairvoyant. I was only too aware of how his conditions were affecting him day-to-day; we lived through those experiences each and every moment, alongside him. But I wanted to know how they would affect him next week, next month, next year. I presumed that university was off the cards now, but what about GCSEs? Would he marry the girl of his dreams? Come on Dr Michael, crack out your crystal ball, give me the answers to the big questions.
‘I can’t predict the future,’ Michael said after a long pause at a follow-up appointment some months later. ‘At this stage it’s difficult to say. As he grows, he will become more reliant on his wheelchair. I envisage that into adulthood he’ll be able to get around indoors, inside a flat or house, without too much difficulty. However, he’ll probably be reliant on a wheelchair for travel outside. As I say, it’s very difficult to predict.’
We said nothing, just nodding back at the kind, smiling face sitting across the consulting room. In the corner a small boy banged away at the wooden toys he was playing with, once again oblivious to it all.
‘Is there anything else you’d like to know?’ Michael asked, wrapping things up.
Me and Mum turned to each other. ‘No, we think that’s everything,’ came the reply.
How my lips lied that day. Inside my head a voice was screaming, but the words just wouldn’t come out. ‘Actually, there is one more thing. Look closer into your crystal ball, Dr Michael. Please, one more time, before the light fades. I know you’re running late with your clinic, but it’s an important question, maybe the biggest one of all. This young man you see, when you look into the future, this adult who is living in the house you mentioned earlier… is he happy, Dr Michael? Is he?’
CHAPTER NINETEEN
Disco Fever
Sometimes it takes an anniversary of doing something you’ve done for years to remember just how far The Boy has come. This week that reminder came in the form of the Christmas tree.
The tree used to be such an upheaval for him. And you can’t blame him really. Things were going quite nicely in his world; he knew where he was with everything and then, once a year, Dad would insist on moving the furniture round and sticking a seven-foot plastic tree with flashing lights in the middle of the lounge where the TV should be. Little wonder it was pulled down every other day.
But now we’ve become accustomed to it. The tree has become part of our routine like everything else. The same tree, with the same decorations, in the same place. Granted, if Dad had known the tree was meant to last ten years he might have selected a specimen other than the cheap supermarket one he got at the time, but it’s our tree all the same.
The Boy doesn’t help with decorating the tree. Boring. I learnt my lesson last year when I insisted he help and he lined up all the same size baubles of the same colour on the same branch. Instead, he turns up now for the big switch-on. Much like London’s Regent Street had the Spice Girls to turn on their lights, in 2013 we once again had The Boy in his pants to do ours.
We even have a fairy nowadays too, sitting atop and surveying the chaos below. For two years she was left abandoned in the cupboard and replaced with a sellotaped-on Power Ranger. I reminded him of it the other day and I could see on his face that look of, Let’s do that again! But he let it go.
The tree is in the lounge, which has recently been christened ‘Dad’s Room’. The Boy’s bedroom next door is now apparently ‘My Room’. Given he spends so much time in there, I asked if he’d like to get some Christmas decorations for ‘My Room’ too. To my surprise, he said yes. So off we went to the Pound Shop.
The Pound Shop is perfect for us, not least because it’s a pound shop. The Boy still hasn’t fully grasped the concept of money and, although he is getting better at it, he still thinks purely in terms of ‘How many things can I have?’ And the Pound Shop is the only place where I can be sure I’m giving the right answer without bankrupting myself. Ten things. Ten things to decorate your room for Christmas.
You can imagine how tasteful the bedroom looks now. Resplendent in its glory. It has been decorated with the subtlety of a Royal British Legion social club function room. And in the middle of it, on his chest of drawers, sits the elixir of life, the very reason to get up in the morning – his chocolate advent calendar. Breakfast.
Oh, and for designers of chocolate advent calendars, I’ve got a message for you. The Boy tells me he could do your job better than all of you. You can’t even put the numbers one to twenty-four in the right order.
MY SON’S NOT RAINMAN BLOG
It had been an eventful year, there was no question about that. And, as it neared its end, I had little idea that the biggest occasion was yet to come, but this time for all the right reasons. My time working in the care home, The Boy settling into his special school, the two seemed to coincide. Christmas is often described as being a ‘magical time’, but I’m not sure of that. I do believe though that there’s something in the air at Christmas; maybe the reminder of the wonderful times that I had with my dad at this time of year. The more I age, the more I think that Christmas isn’t in itself magical; what’s magical is the state of mind it sometimes puts us in, ready to open our hearts to the magic that exists all year round already. (I sound like I’ve been drinking. I haven’t, honestly.)
I suppose I get all melancholic as December approaches because Christmas will forever be that little boy standing on the stairs waiting for the magic to happen. And on that particular Christmas, after all the ups and downs, the magic came in the shape and form of The Boy’s special-school disco.
As I’ve already mentioned, going into school for plays/parents’ evenings/bloody-anything-really had for so long been the cause of real trepidation. It took some getting used to: other parents giving us a smile as we sat next to them in the hall, rather than giving us the cold shoulder because we were the parents of ‘that boy’. How little they knew him.
My first introduction to special-school events was the school play, the nativity. I’d been to school plays before, when The Boy was in mainstream. ‘Inclusive education,’ they called it. People often ask if I’m a fan of inclusive education and, like most things, I’m sure when it’s done well it’s a brilliant thing. But doing it well requires patience, training and, of course, money. Too often one or all three things from that list are
missing. And, when that happens, school just becomes survival of the fittest. I met a head teacher of a special school the other day and he described the place as ‘the home for the victims of inclusion… we’re just here to pick up the pieces when it all goes wrong,’ he said. That’s not to say inclusion isn’t right for some children because it certainly can be. Maybe that’s the better question we should ask – does a one-size-fits-all education system really help anyone?
At The Boy’s mainstream primary school, the concept of inclusiveness seemed sadly lost much of the time, stuffed down the back of the sofa only to be replaced by a huge sign reading ‘Token gesture’ with ‘At least they’re taking part’ popping up from behind the armrest occasionally.
On the day of The Boy’s first school play in reception class, their idea of inclusiveness was for all the ‘children with additional needs’ to herald a scene number. (The children weren’t even designated as special needs at that point. The word ‘special’ comes later, with a diagnosis in hand.) That was it. The other children got to dress up, dream a little and beam away to their parents filming them on the iPad for it never to be watched again. The Boy and his ilk were numbers to be walked across the front of the stage. The Boy was ‘Scene no. 3’ and at the end of scene two came his big moment. As the rest of his class got into position for their song, the classroom door next to the stage opened and The Boy, with a large number 3 stapled to the front of his T-shirt, was escorted across the front of the stage by a teaching assistant. Dragged from that door to another at the opposite side of the stage, seemingly to disappear forever. Inclusion at its best.
My favourite part of that whole play was the character of ‘Scene no. 4’, even if he never actually appeared on stage at all. As an audience we’d already had three stage numbers by now, we knew the drill. As the song at the end of the preceding scene petered out, all eyes were fixed on the classroom door at the side of the stage, eagerly awaiting the arrival of no. 4. But no. 4 never came. Instead that classroom door swung open and you could just make out the arm of a desperate teaching assistant beckoning no. 4 to come forward. And all you could hear echoing around the walls of the school hall was an out-of-sight table being shoved across the classroom followed by a five-year-old yelling at the top of his voice, ‘I’M NOT F*CKING DOING IT!’
As other parents tutted their disgust, congratulating themselves on their decision not to invite no. 4 to their beloved’s birthday party, and the murmurs of disapproval spread round the school hall, I found myself admiring this young boy more and more. His ability to be true to himself, to express what he really wanted. Even now, years later, he’s the one person I remember from that entire performance – the young boy who had the ability to stamp his individuality on this world. Good for you, mate.
But that was all a lifetime ago. Here we were now, in the special school and their play couldn’t have been more different. There’s something about special-school performances and special schools in general – much like the young boy who was Scene no. 4, there’s an honesty to them. It’s something I’ve learnt to love and admire over the years – I’m an innate people pleaser and having the ability to do something purely for yourself, for no other reason than you’ve decided you want to do it, feels refreshing. For years I thought it was the wheelchair-adapted, light-blue minibuses with their Sunshine Variety charity logo that marked out special schools, customarily sporting a large scrape down one side where a teaching assistant has misjudged the width restriction on the way to the swimming pool. But it isn’t that at all. It’s their honesty.
The crippling desire to want to keep everyone happy has been the bane of my life for so long. It’s only now in my forties that I realize how much it’s held me back. Many years ago, when I started working as a stand-up comedian, I got my first review. It was pretty scathing – not least the line, ‘He’s a comic who doesn’t want to risk having a viewpoint of his own.’ That wasn’t my comedy he was describing, it was my life.
As we filed into the hall for the play that day, the lingering smells of the school lunch were still hanging around. To all intents and purposes it started off like any other school nativity play. Maybe the finish on the set design wasn’t quite to the usual standard, but it wobbled and leant precariously over the proceedings just as it should. After ten minutes the music teacher (now theatrical director and playwright) dimmed the house lights (turned off the fluorescent strip lights apart from the ones at the front of the hall), signalled to the orchestra to start up the opening bars (pressed play on the CD player) and we were off.
There is a short pause. The play opens with the two lead characters entering from the classroom door at the side of the stage. Mary and Joseph, the stars of the show. They’re refusing to hold hands – in fact, Mary is striding out in front. It would be a stretch of the imagination to describe the two of them as a ‘loving couple’. They are treating each other with the indifference of a husband and wife who have been married for twenty-five years. Every now and then they glance towards each other, seemingly hating the very sight. They take their seats at the front of the stage. Then there’s another pause. You get used to the pauses in a special-school play. There are more pauses that afternoon than Harold Pinter used in his entire career. A pause as someone makes the last-minute decision of whether they really do want to do this or not. I love it – each pause creating tension, another reminder of lives being lived in the moment, in the here and now.
And so, after a fair old wait, during which Mary and Joseph manage to sit simultaneously together but with their backs to each other, the Three Wise Men appear. Except there’s only two of them. A huge part of me wanted the third one to have his moment, to fling open the door at the side of the stage and, with his mum’s tea towel wrapped round his head, once more scream the immortal words, ‘I’M NOT F*CKING DOING IT!’
Alas, his is a silent protest on this occasion. Instead, the Two Wise Men join Mary and Joseph on the stage. One of them spots the sea of smartphones and iPads filming the event, grins and waves to his adoring public.
And that is pretty much it for the leading players. Everyone else in the school is a sheep, all sixty-seven of them, sitting at the side of the stage. For reasons unknown, there are no shepherds. Just half a hall of children dressed as sheep. Except one. In the middle of the homemade sheep outfits one boy sits wearing a Spiderman onesie – it’s never referenced at any point. Every fourth or fifth sheep is a strategically placed teaching assistant, crouching down, arms and legs splayed, trying to pin down as many wandering sheep as possible.
Among them sits The Boy. Not on the sidelines but right in the thick of it all. He’s dressed like all the others, but is easy to spot. He’s wearing his sheep mask on top of his head, he isn’t joining in with any of the songs and in many ways he seems completely oblivious to everything going on around him; he’s just waving away to the stupid man who looks a lot like him and is giving him the thumbs-up and crying his eyes out in the third row.
I can’t tell you what it meant to be in the audience that day. It wasn’t a long play at all: there were a few songs and one of the sheep did a solo. Earlier that week The Boy had received his first-ever birthday-party invite and now, here he was, sitting among a group of children. My son was a sheep. Belonging. Not tagged on the end as an afterthought, but a smack-bang-in-the-middle-of-it-all sheep.
Two days later, the elation slipped, if only for a while.
It was a Thursday, a dark and overcast day that seemed to match The Boy’s mood perfectly when he stepped off the school bus. I knew things weren’t right with him even before he arrived home. When your child doesn’t speak to you about their school day, you learn to look for other signs about how the day has gone. One sure giveaway was if The Boy was sitting next to someone on the bus that brought him home. If he was, then invariably it had been a good day; it meant he was happy and could tolerate other people around him. If he was sitting alone, it meant the day hadn’t gone well. It had all become too much for him. The
closer to the front of the bus he was, the worse the day had been.
That day he arrived sitting in the front seat. He stepped off the bus and burst into the flat. ‘I’m not going to school tomorrow.’
‘Why not, mate, it’s the disco tomorrow, you’ve been looking forward to it for ages!’
‘Not going, not going, not going, NOT GOING!!!!’
The Boy struggled that night. He couldn’t settle, was aggressive, he just kept hitting out at the world. These were the moments I hated the most – you could see the fear in him, could sense the absolute terror he sometimes experienced, but could never, ever put into words.
‘Come on, mate, find a way. Tell me what’s wrong. Tell me.’
It got to about three in the morning and The Boy was still going strong. This fear inside him, building and building. Eventually, in the stillness of night with all the lights off and in the safety of Dad’s bed, he came out with it.
‘I don’t want to go to school tomorrow because The Boy With No Ear is coming to school tomorrow.’
I’ll let that sentence hang there for a moment.
It transpired that there was to be a boy visiting the school the next day with a view to joining in January, who looked physically different to the other children. So, the teachers decided to prepare the class in advance. However, the plan had backfired. The Boy had decided he didn’t want to go to school with The Boy With No Ear as ‘people should have ears’.
The next morning I managed to coerce The Boy onto the school bus with the lure of the disco at the end of the day and the promise that I would be there for it. Then I debated as to whether I should telephone the school to warn them that The Boy wasn’t quite himself.
You see, that was the danger with schools. This whole ‘fight’ for education had become just that – a war. History told me that if I telephoned the school to forewarn them that The Boy ‘might have an unsettled day’, rather than working together, he would invariably have an unsettled day. If I said nothing, we might just get away with it. It’s sad, looking back, that it had gone that way, but The Boy so often seemed to be a chameleon when it came to his emotions and his behaviour – if people expected the worst of him, that was exactly what he delivered. If people expected him to thrive and be happy…
My Son's Not Rainman: One Man, One Boy, a Million Adventures Page 15
