‘Sorry, flower,’ I paused to apologize over my shoulder as we boarded, ‘this lad’s got a dream.’
We jostled our way through the carriage and took our seats at the front of the train, just the windscreen between the two of us and the straight track stretching out ahead. It was time for the pièce de résistance. I opened up the small rucksack that I was carrying (I had craftily told his mum at handover it contained some drinks, change of clothes and a first-aid kit) and I pulled out a small child’s plastic steering wheel that I’d picked up from Argos en route. I attached it with rubber suckers to the windscreen in front of us.
Right sunshine, here we go. You and me, kiddo, we’re not just passengers on the Magic Train. We’re going to drive the bloody thing! And, as that train moved along the tracks, if you believed enough, if you just believed…
It felt like it took off into the air. As if we soared higher and higher. On those Saturday afternoons we pushed the fur coats aside and rode on through the back of the wardrobe.
‘Hello, Mr Tumnus!’ I’d shout out, pointing into the distance. ‘Hello, Aslan! Hello, magical, mystical towers… of Canary Wharf.’
We took a left turn at the Magic Faraway Tree before we climbed a little higher to Neverland.
And it was there, son, riding the DLR, where I realized how lucky I was to have you in my life. As you huddled in close, with us both in our green parkas, there were moments where I couldn’t tell where I ended and you began. I don’t think our future had ever felt more precarious, yet life had never felt more real or more pure.
And then he spoiled the moment. In just five words, The Boy would suddenly ruin it all. ‘Can I drive now, Daddy?’
Looking back, we both needed a bit of escape on those Saturday afternoons.
Eventually, we’d ridden ourselves to the point of exhaustion and I dropped him back home again, ready to do it all again the week after.
That was the worst bit, saying ‘Goodbye’ on the doorstep. Batman never had to say goodbye to Robin, and even the Lone Ranger had Tonto. I’d like to pretend it was the times he cried as I left that were the hardest. But they weren’t. It was the times he didn’t that hurt more.
I knew I had to get my own place; we couldn’t carry on like this. I scoured the area looking for somewhere local and affordable. And then I found a flat. It all happened surprisingly quickly and I moved that November. I negotiated the rent with the landlord to include a bed and a sofa and I brought some things from our former house: my books and a portable TV. I really wanted the Le Creuset griddle pan, but it just felt wrong to ask.
It was my first time living alone, ever. The Boy’s mum came round to carry out the all-important health and safety inspection before he was allowed to visit. The new home had to have her seal of approval. Plug protectors were needed. And window locks. And cupboard guards. And safety strips to prevent fire doors closing on trapped fingers. I nodded along, writing them all down on a scrap of paper, knowing none of them would ever be bought. We’d just get by.
The Boy loved the flat. I was so worried he’d hate it, seeing none of his familiar things. I felt like an estate agent showing him around on his first trip, desperate for him to like it. It didn’t look like a home, but the emptiness was precisely what made it home for him. No clutter, no unnecessary objects getting in the way, just freedom to run around and make noise. It was also just around the corner from his mum’s house and he would be close to school – same park, same familiar shops, same, same, same. Even the fact that there was no bed in his room didn’t faze him.
And there I was, thirty-five years of age, finally feeling like I was a grown-up. That first time when he came over and we closed the door to the outside world, that was it. Much like that moment when we drove home from hospital for the first time all those years earlier, here we were. A family. Until that point, it felt like I was pretending at being a parent; his mum was always around if he got too much. But this was it. It’s just you and me, kid.
It wasn’t perfect, the arrangement with two homes, it never would be, but it worked as well as it could. His mum and I had discussions around shared care and decided to start slowly. At first The Boy came over to my flat every other weekend and one night in the week. I think Mum was nervous as I wasn’t that long out of hospital and this was all new for all of us, not least The Boy.
We spent that Christmas together, ‘for The Boy’s sake,’ as we have every Christmas since. And birthdays. I can’t pretend it’s always been easy, because it hasn’t. Like so much in this world, it isn’t necessarily better or worse than the life I’d envisaged. It’s just different.
That December I got a bonus from work, not much but enough to kit out a flat with the basics from IKEA and I borrowed items from friends. The Boy finally got his bed, which was when he came for his first overnight stay. In some ways, he was more settled than he ever had been at the house. The house was too big for him. He always preferred small and he loves Nana’s bungalow, flats and caravans. His new bedroom had the lounge on one side and my bedroom on the other. He was never more than a couple of feet away from another person and that was just the way he liked it. There were fewer places for the monsters to hide. And perhaps what really swung it, from the moment he moved in, was that he could reach the light switches.
Night-time has always been the enemy for The Boy. It was not so much darkness as the shadows he didn’t like. In the corners of rooms, in the recesses, that’s where the monsters lurked. And when the lines between reality and make-believe are forever blurred, those monsters can seem only too real.
From the first night he stayed, a bedtime routine began that has remained in place ever since. As the light begins to fade outside, all cupboards must be closed. Tightly. Wardrobe doors shut. To keep the darkness inside them. He will close them himself nowadays, but there was a time when he couldn’t even bring himself to do that for fear of something reaching out and grabbing him. We have to do a sweep of the flat together in silence, me in front, him pointing to each offending piece of furniture in turn. We finish with the bed, the final check for monsters underneath, before the all-clear. Not so long ago I wondered where his old teddies had gone from the bottom of his bed and then I found them. They were stuffed down the side of the bed next to empty Lego boxes, to fill the gap where the shadows form when no one is looking.
He also starts turning on lights, preparing for the imminent onslaught of darkness. Time to flood the place with light. Every light. Except for table lamps or bedside lamps – they’re redundant in this flat, as is any form of ambient illumination. Their light is too soft, forming sinister shadows that dance across the walls and leave too many corners unlit. No, it must be the ceiling lights. Without lampshades. Bright. Clinical. And, although cupboard doors must be closed, room doors are different; they must be flung open, as open as can be to ensure there’s nowhere to hide behind them.
Once night-time has arrived no room door can be closed. They must all be wide open, almost turning the flat into one giant studio. Bathroom, kitchen, bedrooms, all doors wedged open, all lit brightly. I can almost hear Grandad’s voice from beyond the grave, shuddering at the thought of all that wasted electricity seeping out of every bulb. ‘Do you think we’re made of bloody money? Christ, it’s like bloody Las Vegas in here.’ But at least there’s nowhere for the demons of the dark to hide.
Once The Boy’s happy with the state of the flat and we’ve had a forty-minute fight about brushing teeth, he goes to bed. And, after going to all that trouble to ensure the flat is brighter than an operating theatre, he buries himself deep under his duvet. Then he builds a tent out of three pillows and burrows his head under there too. It’s too dark for shadows under there. Finally he can sleep, safe in the knowledge that nothing can reach him because on the other side of his makeshift tent he’s surrounded by light.
After half an hour of silence from the bedroom, Dad will decide the coast is clear. In the lounge he’ll finally get the chance to remove his sunglasses and click
the ceiling light off. The shadows from the flickering TV skitter across the walls – the light spilling in from the open kitchen door and hallway is more than enough to illuminate the room. Almost immediately, in the room next door, a monster stirs. Feet pad across the hall and, silently, a hand reaches around the door frame, flicking the switch back on.
Dad should have learnt by now, The Boy has told him often enough. Always leave the lights on and little monsters sleep.
CHAPTER TWELVE
The Doctor Will See You Now
The Boy got soaked on our way back from the shops this morning. Mainly because Crap Dad forgot his coat. As we walked home the sun came out and he dried off. Or, to put it in his words, ‘All the wet has gone off me.’
He was chatty today. And inquisitive. The chatty bit happens quite often, normally about something he’s seen on the Internet or a Doctor Who fact that suddenly needs sharing. But the inquisitive bit is a treat to be savoured, a rarity. This is the boy who’d rather spend his days at school locking himself in a toilet than acquiring knowledge. Knowledge is something to be gained in secret from a computer screen when no one is looking, not something to be learnt from a person. But today he wanted to know stuff. He wanted to know about The Past.
The Past is a big confusing mess to The Boy. Anything and everything that took place before today happened ‘a long time ago’. Something that happened yesterday is now confined to the same time frame as ten years ago. And events that happened before he was born are just inconceivable to him. In The Boy’s eyes the world and everything in it was created the very same day he was.
The other day we drove past his nursery. The Boy went there eight years ago. And as we drove past a child was coming out of the door. She must have been around two years of age. ‘Who’s she?’ The Boy said. ‘I don’t remember her! She must be new. I hope my friends are looking after her.’ So, we talked about how none of his friends are there anymore, how they’ve all grown up like he has and how he won’t know anybody in the nursery now.
And this talk of the past has obviously been playing on his mind, because today he asked me about when I was a child. So, I told him all about how Nana is my mum and I lived with her and his uncles who are my brothers, together with The Grandad Who Isn’t Here Anymore. And he wanted to know more. He asked about our house and the garden, and what the bedrooms were like. I finally got the chance to tell my son how tough it was in the olden days and how we had bunk beds and no heating, but we were ’appy.
The conversation lasted about seven minutes. Seven glorious, golden minutes. He asked more questions, about who shared a bedroom with who, and who I sat next to at the dinner table. And it seemed to be sinking in, this idea of a past without him, he finally seemed to be getting it. Then suddenly he became more animated. ‘Who did I sit next to at dinner?’ he asked. ‘Did I have a bunk bed too?’
Ah, well, there’s always tomorrow, when today will become yesterday too. In many ways you’re right, son. There was no world before you.
MY SON’S NOT RAINMAN BLOG
I touched on it earlier, the strange emotions it stirs inside me when I’m delving into the past. Long-forgotten memories suddenly flood my every thought.
It’s particularly true when it comes to The Boy’s behaviour – I don’t know if it’s intentional or just the mind protecting itself, but I’d almost forgotten just how difficult it was. When I was dealing with so-called challenging behaviour on a daily basis it just becomes the norm.
I remember years later being at an appointment and we were asked how things were going ‘behaviour-wise’. The Boy’s mum replied that things had become much better and that The Boy was hitting out far less. The doctor then pointed out that he’d hit his mum seven times during the ten minutes we’d been in the room. It wasn’t that we were glossing over it or trying to deceive the doctor. I suppose it was just that we had become so accustomed to it that we tended not to notice if it wasn’t a major event. I guess it’s a bit like living with a chronic condition – there’s an underlying pain each day that you become adjusted to, so it becomes the norm. It’s only the spikes in pain that are recorded.
I always said the whole idea of telling our story was to make sure these behaviours didn’t define him and going back over them is proving a challenge in itself. And today it’s wound me up even more because another film about autism has been released and I’ve watched the trailer. At first glance it looks like a beautifully made film and then it ends up following the same old tired themes: genius, kooky, loveable kid, always on the outside looking in, eventually discovers his true calling as a maths genius, falls in love with another kooky maths genius and life’s twee and isn’t-being-autistic-brilliant. And part of me should be delighted and thrilled that it’s another celebration of the condition. But it seems so far from the reality we have lived. When will the film be made of the young boy sinking his teeth into his friend’s arm or turning round and smacking his parents in the face because sometimes it feels like it’s the only way to be heard? That was our experience for so long. Autism isn’t this mystical cape that can be unwrapped to reveal an enigma; it is a frightening, horrible, angry, impenetrable fog.
Me and The Boy’s mum were just lost in it all. Maybe that’s why we still get on now, even after all these years of being separated; it isn’t just The Boy who bonds us, it’s what we’ve been through over the years: the finger pointing, the blame. And I’ve no doubt that parts of the experience exist only in our heads – the sense that we could have done more, could have been more. But it’s been said to our faces plenty of times as well. When a child is behaving in a way that no one quite understands, people decide it must be the parents who are at the root of it. They’re not strict enough. No boundaries. Next minute they’re too strict. Not consistent enough. Then the personal favourite, straight from the 1950s ‘Parenting Manual’: ‘Just bite him back, that’ll learn him.’ Bite him back. I can’t tell you how many times I’ve heard those words over the years.
In reality, I always hold the knowledge that however strange and distressing we as parents find the situation, I can only imagine how difficult it is for the child caught in the middle of it, the distress and confusion The Boy must feel as he struggles to make sense of the world around him.
Whatever was going on for him internally, it was echoed by his physical presence. The Boy was now four years of age and the promised improvement to his legs hadn’t materialized. It seems strange using that phrase now, ‘his legs’. It’s a phrase still used now, by family, close friends, even The Boy himself. ‘My legs’ is as much a medical condition as migraine or diabetes. The Boy continued to be so unsteady when he walked or ran. Oh, he could run and run, legs splayed outwards, never quite doing what they were meant to be doing. He’d invariably fall. Every few feet or so, his lack of balance would catch him off-guard and he’d tumble to the ground. Other children of his age might do the same once in a while and then scream and wail with the pain that would mysteriously vanish the minute they felt their mother’s hands scoop them to safety. Not The Boy. There were no tears, no crying. The falling down had become as much a part of life as the walking bit. He just got up and carried on.
‘Knock-knees. He’ll grow out of it.’ Another GP appointment over with. The trouble was, no one had ever really got close enough to The Boy to examine him. When you have a boy in your surgery who has been screaming down the waiting room for fifteen minutes under the glaring eye of the gatekeeper behind the reception desk and is currently ripping the paper cover off your bed in the corner of your consultation room, chewing on the small wooden stick normally reserved for moving tongues out of the way for a throat examination, which you handed over in an effort to appease him when he entered, you just want him out of there. At least, that’s what it felt like to me.
It became difficult to keep believing ‘the legs’ were nothing to be concerned about. Wherever we went, playgrounds, soft-play centres, the same conversations. ‘What’s wrong with his legs?’ they’d
ask. ‘Knock-knees,’ I’d reply unconvincingly. ‘He’ll grow out of it,’ I’d add as I hauled him to the top of the slide, The Boy being unable to climb the ladders. Parents looked at me strangely but I was becoming hardened to strange looks by now. Now I realize I spoke to people less and less as time went on. It just became easier to do it that way. No awkward questions I didn’t know the answer to.
Deep down, his mum and I knew something wasn’t right. ‘Carry!’ The Boy would plead far too often after walking short distances. ‘Carry.’ In the end, we decided we needed to know once and for all what was wrong. We made a decision that I can hear my dad tutting at even now. We were desperate, Dad, desperate.
We decided to go private. We paid to see a paediatrician.
Me and Mum both came together for this one – as we’d do for so many appointments over the years. If the struggles in the GP surgery had taught us one thing it was that it needed two of us to get anywhere if there was an appointment with The Boy. In the waiting room one of us could smile sweetly at the gatekeeper and try to convince her you weren’t the awful parents she’d already decided you were. The other would try to entertain The Boy with some eighteen-month-old copies of Amateur Photographer magazine and Cosmopolitan on the table. Then we’d go through to the doctor and we’d maybe reverse the roles. One would do the talking, the other would be the performing clown, the children’s entertainer who would try to keep The Boy in the room for long enough for any kind of examination to take place.
The consultant we saw that day was as unremarkable as any other. I tried to convince myself that with the exchange of money she was a bit posher, but in reality she was probably the same consultant we’d have seen on the NHS if we’d ever got a referral.
My Son's Not Rainman: One Man, One Boy, a Million Adventures Page 9