And besides, I couldn’t phone the school as I didn’t know the name of the other lad involved and I really didn’t want to start a conversation with ‘He’s a bit scared of The Boy With No Ear coming to school’. I left it and instead sat at home, mobile phone in hand, just waiting for it to ring. And, for once, it didn’t ring.
At the end of school I went along as agreed to meet The Boy for the school disco, almost dreading what I would find. I can’t tell you how many events, trips and activities The Boy has been excluded from over the years. Until we were in the hall for the disco I wasn’t quite sure it would actually happen. However, I stood outside the classroom door and the signs were good – he was still in there. So often when I went to collect him he was in another room to ‘calm down’ or ‘chill out’ or whatever the preferred term of the day was. But today, there he was, in the classroom. By the door stood a new parent I’d never seen before. Anxious, not making eye contact, this was all new to her. Ah, I thought, she must be the mum of The Boy With No Ear. I’d like to tell you I offered a reassuring word, went over and introduced myself and put her at ease. But I didn’t. The old awkwardness and shyness was never more prevalent than when standing in the school playground at home time.
Suddenly the classroom door was flung open and first out was The Boy, a big grin across his face.
‘Daddy, Daddy!’ he shouted. ‘He’s really nice, The Boy With No Ear! And he does have an ear! It’s just little and in the wrong place.’
I smiled meekly at the mum stood next to me but she didn’t look up from her mobile phone and so I led The Boy off towards the school hall. Disco fever.
I hadn’t really known what to expect. The Boy was now eight years old and he’d never been invited to a school disco. My only knowledge of such things came from my memories of school discos thirty years ago, where the boys stood on one side of the hall and the girls stood on another, and no amount of fizzy Panda Pop could take away the awkwardness I felt, even with the new corduroy trousers from Marks & Spencer and the slim, leather piano-tie swishing from my neck.
There was no dress code for this disco. Get with the times Dad, it’s the twenty-first century, wear what you want. The only dress code that seemed to be in existence that day was a gravy stain down the front of a white polo shirt from the Christmas lunch.
(Why do children wear white polo shirts? How do you clean them? There were times The Boy came home from school and his polo shirt was so dirty that I thought the dinner ladies must just line the children up against the far wall of the hall, ask them to open their mouths and then fire their lunch at them from twenty-five feet away with a spatula. I read that Justin Bieber wears his underpants just once and throws them out. Well, he might think that he’s living the rock ’n’ roll lifestyle but I’ve had white supermarket polo shirts with a lifespan shorter than Justin Bieber’s pants.)
I’m not sure exactly what I was expecting as I walked into the school hall that day. All I knew as an adult was if someone had offered me a disco in the middle of the afternoon I’d be knocking down Wetherspoons’ door at 9.00 a.m. and lining up Jägerbombs just to cope with the sheer, bloody misery of it all.
But a special-school disco was just different. Whatever was in the hall that day, I wish it could have been bottled, its essence captured in some way and spread across the globe. What a better world it would be if every single person on this planet could experience the joy and the magic of that day.
It’s difficult to capture it all, to do it justice, but I’ll do my best.
The DJ was a lad from the sixth form with ADHD, so each song he played lasted about twenty seconds. There were teaching assistants dancing away to ‘I Will Survive’ like they were at Secrets nightclub in Newcastle on a Friday night thinking nobody in the world was watching them. There was one boy contentedly hanging off the gym bars on the wall. Another boy legged it around and around in circles for no reason whatsoever other than that was entirely what he wanted to do at that precise point in his life. At the buffet, lovingly prepared by the parent–teacher association at the other end of the hall, there was one child standing mesmerized, counting the hundreds and thousands on top of the cupcakes. Another child walked past and just picked up a sausage roll, smelt it, licked it, and put it back on the pile. The freedom of that simple gesture has never left me to this day. Smell it, lick it, don’t want it, put it back, pick another, who bloody-well-cares? IT DOESN’T MATTER. And at the other end of the buffet table stood a boy who was just slamming BBQ-flavoured Hula Hoops one at a time into his forehead. In the middle of all this chaos and carnage, there sat a young, blind girl in the centre of the dancefloor. And she was so lost in the music, it was almost like she’d become the beat.
Every now and then The Boy would zoom into shot. It was like watching a child come alive that day. He flung himself around that school hall as if there was no tomorrow, as if his very life depended on it.
I suppose that day was the point when I first saw him as his own person. Away from me or his mum. So often I’d questioned whether special school was right for him, and many times I’d bemoaned our lot in the world. That day I realized that he’d be OK. Like the other children, he was so at ease with himself that afternoon, just existing in the here and now. He danced as well – oh, how he danced. The thing that had been holding him back until that point wasn’t the physical aspect of his cerebral palsy, it was having the freedom to express himself, to just be… It was magical.
I can’t tell you the impact that day had on our lives. Well, my life. It seems crazy that something as simple as a bit of music in a hall with a few flashing lights and some defrosted frozen food could have had a profound and lasting effect on my life. Yet it did.
I learnt far more over the two hours of a school disco from the so-called ‘more vulnerable’ members of our society than I have from any book, professor or any of the rest of it. Would the boy with the leather piano tie from all those years ago have joined in that day? Not a chance. He would have been too busy worrying what everyone else thought of him. But The Boy and his friends… they were living in the moment. Just simply living their lives with an intensity, a joy, a freedom and an honesty that puts the rest of us to shame. I realized then that the real joy in life doesn’t come from the big things. At the very start of the book I mentioned that it comes from the little moments, the moments where we’re just being. And as a society, we don’t celebrate just being enough.
And I suppose if I had one wish on that wet December afternoon, just one wish, it was that I’d had the bottle to get up there with them and dance the day away.
CHAPTER TWENTY
He’s Behind You
Recently The Boy has become more tired, frequently taking naps at school, and his walking gait has deteriorated.
So, after speaking with his teacher, the day has come. Tomorrow The Boy takes his wheelchair to school for the first time in his life. And, although it’s a day I knew was always on the horizon, maybe I thought it would be a few years away from now. The reality of it has hit home and I suppose it’s knocked me a bit. It’s just another reminder of how the future creeps up on us when we least expect it and with it comes that fear of what else it might bring.
I remember the first visit with The Boy to the wheelchair clinic. I hated it. It was just a feeling of unbearable sadness. All right, he had a strange walk, but we got by. Yes, he became tired on long journeys. But that’s what piggybacks and fireman’s lifts were for. We didn’t need wheelchairs. They were for other people.
Sometimes, though, we impose our own fears and apprehensions on our children. The moment we walked into the wheelchair clinic, The Boy LOVED it. To him it was like the best bike shop in the world. Choosing between a Grifter or a BMX. Aluminium frames, puncture-proof tyres, test drives and a technician to show him how to do a spin. He’s never been able to ride a bike, apart from a three-wheeler – his wheelchair was the next best thing. And what little boy wouldn’t want to take their bike to school?
; So he’s excited about tomorrow. He can’t wait to show his wheelchair off to the other kids. He has given me the instructions for the other children – they can push him, but not without asking first. He has been practising his spins (push one wheel forward, pull the other back, in case you were wondering) and is ready for the attention and glory. I have no doubt that he will be reclining in his seat as he is pushed around the playground waving to the admiring crowds from his very own Popemobile.
Last week, when The Boy was having a meltdown, the deputy head told me that for a boy with cerebral palsy, he can’t half run when he doesn’t want to get caught. And I’m not suggesting for one minute that he carries on doing that, but…
Run like the wind my beautiful boy, run like the wind.
MY SON’S NOT RAINMAN BLOG
In the days that followed the school disco, I tried to recreate its sights and sounds. I’d nonchalantly play the dance hit of the day, ‘Tubthumping’, on the stereo in the hope The Boy might recreate one of his moves, but it never happened. I’d flick the light switch on and off a few times in the lounge thinking he might throw in a moonwalk. Nothing. As with so many of the best memories in life, the moment had gone, a reminder that it was just that – a moment.
I knew I had to try to change my perspective. I had to try to find the joy that I witnessed that day. The dining room table had, over time, been piled high with paperwork relating to The Boy. It wasn’t intentional, just a volume of reports – educational psychologist reports, speech and language therapist reports, physiotherapy reports, consultant reports, occupational therapy reports, statement of special educational needs, the list went on. It seemed they always needed to be referenced by someone or other, so I told myself it wasn’t my inherent laziness that meant they were never filed away, it just became easier to have them all to hand.
Over the days and weeks that followed the disco, I started re-reading the reports. I’m not entirely sure what I was looking for – maybe I thought I was a detective searching for the crucial bit of evidence that had been missed that might help solve the case. Or maybe I was just looking for the positive, desperately searching for the little boy from the disco whose smile lit up the room like a mirror ball.
He wasn’t there.
‘Poor gross motor skills’, ‘lack of empathy’, ‘poor fine motor skills’, ‘trunk weakness’, ‘limited eye contact’, ‘abnormal gait’, ‘challenging behaviours’, ‘sensory difficulties’, ‘lack of coordination’, ‘intoeing’, ‘low verbal reasoning’, ‘little confidence’… blah, blah, blah… It read like a never-ending charge sheet of so-called misdemeanours from the Normal Police. Page after page listing everything The Boy couldn’t do. And here they were, piled up on the dining table in the centre of our home, in the centre of our lives. I’d let that become us. The reports were necessary and important, I understood that. They’d helped me to understand The Boy and they’d got us access to support and help we wouldn’t otherwise have had. But they’d been dominant for far too long. They didn’t capture him, the very essence of him. All that vibrant strength and joy at just being in the world, it could never be found here amongst the photocopied pages from professionals with their electronic signatures and letters after their names.
I bought a filing cabinet and slowly started filing everything away. (I didn’t really; I emptied one large kitchen cupboard of all the plastic food containers with their mismatched lids that never fitted properly and stuffed all the paperwork in there, but ‘filing cabinet’ sounds far more purposeful.) It wasn’t about hiding away his diagnoses and difficulties; it was about accepting them and then moving on.
One evening I dug out old photo albums and went through folders on the computer of backed-up images from long-forgotten mobile phones. It turned out that The Boy from the school disco had been with me all along – I’d just forgotten how to look for him.
That smile as a baby. Those dimples. Sitting in the sand with socks on. Grinning away, face covered in bright-blue bubblegum ice cream. Waving from the truck ride, head rolled back, laughing on the miniature railway. On a boat, hair blowing in the wind. In the lounge at home, playing with the marble tower. Trying to blow out the candles on a birthday cake but not quite managing it and the saliva putting the flame out instead. Wrapped tightly in a towel after a bath, with wrinkled fingers and toes. Feeding the llamas that everyone else was scared of. Chasing a chicken and catching it. Days of perfect blue.
I know this all seems kind of sickly sweet now. I’m not suggesting for one moment that life was suddenly a bed of roses because I’d discovered some half-forgotten photographs. But there was a realization that I had far more control on the outcome of all this than I’d thought up to that point. As parents, we make the weather for our children. We make the weather. And if I had failed to find the joy in any of it, how on earth could I ever expect The Boy to?
We went away on holiday a few weeks later. Not for us the searing heat of the Mediterranean, or the wild animals of Kenya. We contemplated a city break to Barcelona to drink in the sights but instead opted for a caravan park in Hastings, on the south coast of England. In March.
It was a perfect holiday in every way. Swimming in the pool, playing in the arcades and going to the clubhouse at night for cheesy entertainment and two packets of crisps for a pound. We sat through the show for as long as the crisps lasted before heading off to find something else to do. And then one night The Boy discovered his favourite game of all. Bingo.
My son likes bingo. I can feel the warm, satisfied glow of my own dad looking down from above as I write that sentence. I always felt closer to my own dad when me and The Boy went on our trips to the caravan park and I’m not sure why; it’s not like they were places we ever visited as a child. Maybe it was the old gas fire in the caravan lounge and the dated furnishings that reminded me of him. Or maybe it was the role reversal, that I was the one drinking the pint and someone else had the coke. Or maybe it was just that he was a family man at heart and here family seemed to mean more than anything.
We won at bingo. Not the main prize – we got four corners (there’s a name for it, I’m sure, but we were mere newcomers to the sport at this point). We won a teddy bear. The Boy even went up himself to collect it. The bingo caller popped a microphone with a big red cover under his nose. I thought The Boy was going to eat it.
‘Where do you live?’ he asked.
‘Earth,’ The Boy replied, not even looking at him, before snatching the teddy bear out of his hands and running back to the safety of his crisps.
Another night there was a character meet-and-greet where we said ‘Hello’ to Tom and Jerry ‘for real life’. It was here I realized just how much The Boy struggled with the concept of reality and make-believe. I’ve seen people become star-struck when they meet their heroes, be it One Direction or Ed Sheeran. For The Boy, it was two people dressed in cat and mouse costumes. He couldn’t speak, he went bright red, they held out their hands for him to shake but he just flung himself at them, arms wrapped around them, clutching them tight. For real life.
The wheelchair was never far away that holiday and that was OK too. I realized how much The Boy had struggled without it and how much it helped him to remain calm when the world got too much. I mastered the art of one-handed pushing, so the chair was alongside me rather than in front. That way we could chat away as normal.
It was funny, seeing people’s reactions to the wheelchair. We’d spent most of The Boy’s life to date being the subject of judgemental stares and disapproving looks at the ‘naughty boy’. Yet suddenly, when that exact same boy sat in a wheelchair, he was treated with nothing but doe-eyed sympathy and concern.
On the last day of our holiday we went to play crazy golf on the seafront (one of Hastings’ premier attractions). I’d parked the car quite far away and we used the wheelchair to get along to the course. There was a woman in a hut next to the golf course who took the money and I spotted her face change the minute she set eyes on the wheelchair; a small sm
ile spread across her face, filled with warmth and compassion.
I always get such mixed emotions when the wheelchair provokes that reaction. I can’t help wondering what the response might have been if we’d come along twelve months earlier without it and instead The Boy had been screaming and hitting out from tiredness and an inability to stand in line in a queue. Would he have been afforded the same warmth and compassion? Or would he have dealt with the usual judgemental glares and tutting? Whatever the truth of it, there was no doubt the wheelchair made trips out easier for both of us.
That day the lovely lady in the hut refused to take any money off us (ah, it has its upsides now and again, all this) and we made our way to the first hole. The Boy, never one for exerting himself when it isn’t strictly necessary, was still sitting patiently in his wheelchair, his golf club poking up between his legs.
As we got to the hole there was a family of five in front, with the father about to tee off. He glanced up and spotted the wheelchair. He immediately stopped lining up his shot.
‘Oh, please, go in front, please,’ he said, moving his whole family to one side.
‘No, don’t worry,’ I said, ‘it’s fine. We’ll wait our turn.’
‘No, no, no, no, no,’ he pleaded. By this point I was thinking he might throw himself down on the ground as some form of human sacrifice. ‘Please,’ he continued, ‘go in front, please.’
My Son's Not Rainman: One Man, One Boy, a Million Adventures Page 16
