We've been thinking of moving recently. The flat is on the third floor, The Boy is struggling more with the stairs, particularly at the end of the school day when he's tired, and he outgrew his bedroom about seven years ago.
So, I've been looking at houses while he's been at school. Today I messed up the timings, and arranged a viewing at 4.00pm. So, The Boy came with me. I would have brought him along earlier, but I was not sure if the homeowners were ready for his honest appraisal of how they lived their lives. However, I knew no-one was living in this one, so there was only the estate agent he could offend, and let's face it, they don't really count anyway.
The estate agent didn't get himself off to a good start by arriving three minutes late. Four minutes late by the car clock, which The Boy had decided to use to measure the time, as apparently that one was going the quickest.
"Feel free to wander", the agent said as he opened the door to the house. The Boy bounded ahead.
"Stinks!", he shouted over his shoulder as we walked in. Here we go...
The Boy made for the stairs. I'd shown him the floorplan of the house in the car, I'd shown him which room would be his bedroom, he went straight for that. I wandered into the lounge with the estate agent, thinking we'd have a few minutes before he was back. Twelve seconds later I hear him thumping down the stairs.
"Stinks and there's no bed".
The whole viewing lasted around four minutes. To be fair, The Boy was right. It stank. We got in the car and headed home. I asked him what he really thought of the house.
"I really actually quite liked it a little bit", he replied. Which meant he hated it. "We can't live there though", he said.
"My bedroom only had one plug".
The Boy was up in the middle of the night again last week. It hasn't happened for quite a while, and part of me has missed it.
Don't get me wrong, there's nothing pleasant in the initial sensation of being woken with the subtlety of an air-raid siren, but afterwards, once the bad dream or accident or whatever else caused him to wake, once that's dealt with, there's a calmness that descends. That's the bit I miss.
If The Boy lies on my bed with me, he'll let me turn the light off. As long as I lie on the bit of the bed nearest the door. And in that darkness, in the stillness and the silence of the night, we'll talk. He'll open up more than he is capable of doing in the daytime. Lying in the dark, no distractions, no facial expressions to try and make sense of, no background noises. Nothingness. At 2am, in the dead of night, a Dad and his son shoot the breeze.
I'll ask him about his day at school, and the questions that were greeted with blank stares or sighs hours earlier are now answered freely, offering up new details about what's happening the next day. We'll talk about things that went wrong at school, and what he could do differently next time. It's extraordinary, when all the external noises and pressures are taken away, just how much he's able to put into words.
So the other night, we started talking about the future again. He said that when I'm an old man he'll come and visit me. Too kind. And I asked him again what he wanted to be when he is older. It seems he's had a change of heart, and the plans for the computer shop are on hold for the time being. Instead, he has decided that when he is older he would like to be "an Internet Sensation".
Being unfamiliar with the job title, I asked him what that was. He said he didn't really know, but it meant you make Minecraft videos on YouTube, and it's definitely what he wants to be.
And as he drifted back off to sleep I smiled to myself thinking that he might not realise it fully just yet, but in a tiny, tiny corner of the world wide web, there's a little website. And people come to it every day because all they want to hear are stories about him. Just him. Amongst a very select group, he's already our internet sensation.
It's hard getting the balance right with this blog sometimes. I'm mindful that more people are aware who The Boy is now, and it makes that fine balance of giving an honest portrayal of our lives and protecting him even more precarious. Which is one of the reasons why I have avoided the school topic. I don't want to write anything that might one day embarrass or offend him. But it's also an integral part of our story that I can't just gloss over. So here goes...
It's fair to say that the transition to secondary, although still the same school, has been a struggle. The school have been amazing, and have put in place so many steps to help make that transition as smooth as possible for him and the others in his class. Mr Teacher, that force for positivity in The Boy's life, has accompanied him from primary to become his form teacher. The two brilliant teaching assistants who seem to be on the receiving end of so many of The Boy's outbursts have also made the move with the class.
The number of outbursts probably haven't increased in number, but for some reason they just appear bigger in magnitude now. And that might be just because he seems bigger in magnitude too. The change of school jumper and the fact that he's grown over the holidays means he appears older than ever. And that makes some of the more challenging behaviours harder to deal with.
I don't want to dwell on the negative aspects of his behaviour too much in this blog though. Partly for the reasons I mentioned above, and partly because there are enough people already who only see that aspect to him. That doesn't mean the behaviours are being ignored and not being dealt with. Working with the school, I'm confident that we can help him to get back on track again. It's just that if I focus on them too much here, I can make these behaviours define him, given they form such a large part of his day. But he's so much more than that.
So I'm not trying to whitewash over the bad bits is what I'm saying. And I don't want to pretend that there are roses blossoming around the cottage door every day here. For The Boy, the daily struggle as he tries to find his place in the world goes on. But within that struggle, there are laughs and smiles and golden moments. They're the bits I want to share, because long after the behaviours are gone, they're the bits that will forever define him.
Today would have been Grandad's birthday. He would have been 77 years old. It's hard to comprehend that big, strong man from my childhood ever being such an age. And it's even harder to comprehend that it's been twenty three years since all his vibrant strength and happiness was extinguished from the world.
I often think, if he was able to drop in for an hour, what Dad would make of the world nowadays. How alien would it seem to him. The internet. Twenty four hour television. That roundabout near where we used to live which they've replaced with traffic lights.
And most of all I wonder what he'd make of his grandson. I know he'd love him dearly, but would he understand him? He probably wouldn't know how to spell the word autism, let alone come to terms with it. And then there's the biggest irony of all, that the two people who have played the biggest part in shaping my life are the two people who will never, ever meet.
It was a source of regret from the moment he was born, that The Boy would never know his Grandad. He'd never know what it felt like to be carried on the shoulders of a 5ft 10in giant with a headful of Brylcream, and the heady odour of Old Spice and Silk Cut. And then one day it occurred to me, that the two of them may never meet in the physical sense, but Grandad is never very far away.
You know how Dad beeps the car horn and then waves at strangers to see if they wave back? That was Grandad's game. You know when Dad told you that his scar from his tuberculosis jab was where he got shot fighting in the war? Grandad too... The whistling, listening to Frank Sinatra, making you say thank you when you get down from the dinner table, it's all him. The more I think about it, the more I realise, he's everywhere. In everything I do.
Happy birthday, Dad. And thank you. From both of us.
On Friday night we had three friends round for a sleepover. The three friends are all brothers, ranging in age from eight to thirteen. Thirteen... a teenager... that terrifying vision of the future.
Within forty minutes of arriving half the fridge was gone and outside the flat the brickwork glowed orange with the surge of electricity as devices were plugged in across every room. The Boy loved it. I hid in my bedroom. Every now and then I would be summoned by a deep, bellowing teenage voice from the ringleader shouting "Joooohhhhhhnnnnnn!!!!" when they wanted feeding or watering. They all 'slept' in the lounge with a pile of pillows, cushions, duvets, sleeping bags and bourbon biscuits.
No-one had a wash.
It shouldn't really have worked for The Boy, a sleepover. It should have been a nightmare. Social interactions, close proximity, the change to routine, sharing his precious belongings with others, the lack of sleep the next day. But he loved it. The success of the night wasn't really down to him though.
You see, one of the three brothers who stayed is also autistic. I won't reveal which one to save his blushes. I'll just tell you he's a right laugh and brilliant to have around the place. But the two people who really made the night a success were his brothers.
Because The Boy is an only child, I'd never noticed the impact on siblings before. And I'd never really considered how difficult it must be for them growing up sometimes. Trying to understand why there's one rule for one and not for others, and trying to understand your brother's behaviour when you're still trying to come to terms with your own place in this world.
It was the little compromises that the brothers made almost without even realising they were doing it. Sharing a go on the computer often meant a rushed four and a half minutes for them... twenty five minutes for the other two. Who wants the last biscuit... oh, it's already gone. And it was all dealt with by a shrug of the shoulders and just wandering off to find something else to do.
We so often talk of the impact of raising a child with special needs on the parents, or on the child themselves. And sometimes their brothers and sisters get forgotten in it all. Yet their lives will forever be different because of it. Not necessarily better or worse, but different all the same.
The Boy has never really liked night time. Bedtime has always had an element of fear. It's not so much darkness, it's the shadows he doesn't like. In the dark corners of rooms, in the recesses, that's where the monsters lurk. And when the lines between reality and make-believe are forever blurred, those monsters can seem only too real.
As night falls, so his little routine starts. All cupboards must be closed. Tightly. Wardrobe doors shut. Keep the darkness inside of them. He will close them himself nowadays, there was a time when he couldn't even bring himself to do that, for fear of something reaching out and grabbing him. We'd 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'd finish with the bed, the final sweep for monsters underneath before getting the all-clear. I wondered where his old teddies had gone off his bed, then I found them - alongside empty Lego boxes they were stuffed down the side to fill the gap where the shadows form when no-one is looking.
As soon as he's in from school he'll start turning lights on, preparing for the imminent nightfall. Time to flood the place with light. Every light. Except for table lamps or bedside lamps - they're redundant in this house. The light from them is too soft, it throws off sinister shadows that dance across the walls and leaves too many corners unlit. No, it must be the ceiling lights. Bright. Clinical.
And although cupboard doors must be closed, room doors are different, they must be flung far open to share the light. Once night time has fallen no room door can be closed, they must all be opened so the flat becomes one giant room. Bathroom, kitchen, bedrooms - all wedged open, all lit brightly. I can almost imagine my own Dad shuddering at the thought of all that wasted electricity seeping out of every wall. But at least there's nowhere for the demons of the night to hide.
Then The Boy goes to bed. And after ensuring it's 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 deep under there too. It's too dark for shadows under there. 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 come to life. And within seconds, a monster stirs... footprints across the hallway and then a silent hand reaches around the doorframe, 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.
Hello dear friend. It's been a while, hasn't it? I'm guessing you're quite angry with me... I've been neglecting you a little, haven't I? A bit sporadic with it all...
I never meant to, it wasn't a conscious thing, it just kind of happened. Things were great at the start weren't they, the hours we spent together, laughing, crying... and then I went away for a little bit and I suppose when I came back I started to take you for granted a bit.
I'm sorry, that's what I'm saying. And I want to make amends. I've missed you. I've missed spending time with you, laughing and reading your comments. So, to try to make things better, I will write to you. Every day. For a week. Seven days. Just like I used to. Starting from tomorrow. And in the future I won't take you for granted again, promise you.
Love John xx
PS. The Boy says hello. I did ask him if he's missed you as well... he said he wasn't bothered x
I was going to write a different blog today, and then I watched the X-Factor. And I know I'm not saying anything new here, but the early rounds of these talent programmes really, really piss me off.
They're not as cruel as they used to be, or rather, the cruelty is a bit more subtle nowadays. A few years ago we'd have the judges openly mocking individuals with learning disabilities or mental health issues who had the audacity to think they could sing. Laughing in their faces. But times have moved on apparently. Or, at least it isn't as obvious. Instead the bullying is more underhand. The judges sit and smile sympathetically, as if they are no part of what is unfolding before them. The bullying nowadays comes in the editing suite. Like the guy last week who brought along a framed picture of his cat to sing to, no doubt cajoled and encouraged to do so by the show producers. The judges greet his picture with smiles, maybe the odd bemused look, but to the guy involved they appear as nothing but friendly and supportive. What he doesn't see is what the cameras are doing, controlled by an eager director keen to get the most fun out of this one. Each angle ensuring we capture him singing badly behind his framed cat together with some incessant zooming in just to really ram the message home. Ha-ha. What a weirdo. Ha-ha. Hey everyone, come into the lounge quick, look at this weirdo with his cat picture. Ha-ha. What a freak. Ha-ha. It's just bloody horrible.
Oh, you can sing? In that case, we can cut to shots of your family, of how proud they are of you, of them standing round a television screen being hugged by a pint-sized TV presenter as the judges validate their lives and yours. Then we'll bring on the crap singers, the ones to be mocked. No cut-away shots to your family. Not relevant to what we want you for. It doesn't fit with the agenda of painting you as the outsider. The strange one. There will be no back-story of dead family members or of courage in the face of adversity. Despite the fact that as someone who walks a different walk you've probably been through more struggles in your life way beyond what most people would imagine possible.
And yes, I acknowledge it, my rant against the X Factor is almost certainly based in part on jealousy. Because each time I watch it I'm reminded that my son won't be one of the cute 16 year olds with adorable faces and a huge talent whose stage-school personality borders on just the right side of arrogance. But is the alternative for him really just to be mocked and pilloried in front of the nation? Everyone in this world has hopes, dreams and aspirations. Everyone. They might not always be obvious but they're in there somewhere. The Boy has dreams, I know he does. And just because there isn't always the talent or skill to back up those dreams it doesn't make them any less valid. And it certainly doesn't make trampling all over them any less cruel.
There's talk in the papers about the legacy of the Paralympics twelve months on, and whether it has had a lasting effect on the way the nation views disability. Well, while prime-time television continues to poke fun at some of the more vulnerable members of society in the name of entertainment, there will be no legacy. No matter how quickly someone can propel a wheelchair up a running track.
I'm appalling at DIY. Appalling. If ever anything breaks in this house the best The Boy can hope for is that his dad will write a very nice letter of complaint to someone. I don't own a toolkit. Somewhere in one of the kitchen cupboards there is a hammer. In the dark recesses of the airing cupboard there might still be a spanner. The screwdriver hasn't been seen since it was used to change a battery at Christmas.
Last year we ordered a new sofa. It arrived. Then I realised I had to get rid of the old sofa. I was going to freecycle it, but a brief encounter with WWE in 2011 where myself and The Boy would re-enact each move, meant it was no longer fit for human use. It was time to send it to the sofa graveyard.
The local council wanted £15 to remove it. Fifteen quid. Two days notice. Looking back now, it seems a reasonable amount. At the time, though, I thought it was a rip-off. I'm not paying that. I would get rid of it for cheaper. I am a man. With a car. It can't be that hard to chop up a sofa small enough to fit into a Toyota Aygo. I would chop it up and take it to the tip myself. Like a real man would.
To keep costs down, I would try and do it all in one car journey. So, I started off by smuggling out the cushions and backs with the other rubbish. I had to do it carefully, so as not to raise suspicion. Like in The Great Escape when they tipped the rubble out of their pockets as they walked, I hid a cushion in each bin bag I left for collection. After just seven weeks, I was only left with the sofa frame standing upright in the lounge. What a winner.
I could still have paid the £15, but that was of course for losers. All I needed was something to chop the frame up with. I went to Argos, where all the top men go for their DIY supplies. I bought a handsaw for £5.99. I came home and started hacking at it. I was shocked to discover that a sofa frame has foam inside it. I never knew. And it turns out you can't cut foam with a handsaw. Or nail scissors. I nipped back out to the shops and picked up a pair of big scissors (I think that's the technical term for them) for £3.99. Oh, and I needed some strong bin bags of course to put the bits of sofa in. I'd need the really strong ones. £4.29. I think I must have ended up putting the big scissors in one of the bin bags too, because they haven't been seen since.
I continued hacking away. Sofas are stronger than you think. After another couple of weeks, I managed to saw it in half, so it now took up double the space in the lounge, but the handsaw was knackered. That's ok, I thought. I'll buy a jigsaw. I reasoned it'll come in handy in the future if I ever need to chop some furniture in half again. I went back to Argos. £17.99. That'll show the council and their extortionate fifteen quid. It cut the wood brilliantly.
I made a shocking discovery a couple of weeks later. Sofas have things inside them called 'springs', and springs are made of metal. My jigsaw wouldn't cut through metal. And I know because I tried. After another few weeks of research, I went to the local hardware store to buy some metal cutters. They cost me £19.99, but that didn't matter, because by now I was a man possessed. I would show the world that I am a real man. A real man capable of chopping his own sofa to pieces if he chooses to.
Today it is nine months since the new sofa was delivered. And as I write the last remaining bin bag of the old sofa sits next to me, ready to be removed. In just two hundred and seventy three days and at a total cost of £56.54 (I needed more bin bags), I have won the battle. I have successfully stuck two fingers up to the council and their rip-off fifteen quid charge.
I'm only telling you this story because sometimes The Boy will act in a certain way and people will say "oh, it's because he's autistic...". Well it isn't. Not always. There will be periods in his life where The Boy will do some really, really stupid things. And sometimes it will be nothing to do with his autism. Sometimes... it's just genetics.
Today we went to the cafe to meet a friend and get an ice-cream. It was nice to get out of the house for a few hours.
Having been away, it seems strange each time I look at The Boy. It seems like he's grown so much. His face, his profile, his definition... it's all changing. Those teenage years seem to be advancing far quicker than I ever thought they would. And in so many ways he needs his Dad less than he ever has these days, and while I celebrate each and every independent step he makes, there's a tiny part of me that feels ever so slightly redundant with it. That's the lot of parents the world over I suppose, and once again I remind myself I'm blessed that he continues to thrive as much as he has.
There are lucid conversations nowadays too. Conversations where it even seems as if Mr Autism has packed his unwelcome bags and buggered off for a few moments. And so this morning we drove to the cafe, sweltering in the heat but not allowed the air-conditioning on because of the noise it makes, and not allowed to open the windows as they might damage the cobweb that had formed overnight around the wing mirror.
"That's where the hospital is where you were born", I said, pointing to a side road.
"Can we go there?", The Boy said excitedly.
"Of course we can!", I replied, thrilled that I'd been offered an all-too-rare ticket into his world, and fully aware that it could expire at any time. A quick u-turn, and we drove past the hospital. I showed The Boy where Dad parked the car that day eleven years ago. I showed him the doors his Mum shuffled through. I showed him where we moved the car when Mum and Dad carried him out of the hospital into the outside world for the first time and then spent 55 minutes checking the car seat was attached correctly. I told him how Dad drove home slower than a slow thing just to be on the safe side. He listened. He looked at me, nodding away, and he listened, taking in this place where the most precious person who ever existed took his first breath.
"What was the first thing you said to me when I was born?", he asked.
"I said 'Hello, beautiful boy'".
"Aaaaah....", he smiled. "What did I say back?..."
And with that, the moment was gone. Without warning, Mr Autism had climbed back into the car, bringing all his unwelcome baggage with him. Dad tried to carry on the conversation, but it was no more. The Boy's mind had drifted off. To where, who knows. The cobweb on the wing mirror became the focus once again...
We arrived at the cafe, and The Boy chose his favourite, a chocolate ice-cream. And just as I thought he was growing up too quickly, he proceeded to miss his mouth, drop it everywhere and rub it round his face, just as he always has.
When he'd finally finished, he held out his hands, looked at me and grinned. Dad smiled back. He knew what to do. He took out a tissue, wet the corner and gently wiped his son's face clean.
Just as he always has.
This blog is about bringing up The Boy. He's 12 years old and autistic. It's written by The Dad. It's my words, my view. Other people will think differently and have different opinions. Good.