There's so much talk about children spending too much time in front of the television nowadays. Sometimes, I wish The Boy would do it more. I wish it was something we could do TOGETHER. I remember as a child the thrill of watching a programme as a family. Shared laughter, hiding behind the cushion, my Dad doing his Larry Grayson impression. I miss that. The chance to be a family. Together.
There's not many programmes that can hold The Boy's attention for their duration. Certainly not on the first viewing. It's not really until the seventeeth viewing of the same Power Rangers episode that it really becomes fascinating. That fascination remains until around viewing number seventy one when suddenly it will be discarded without warning. Thrown on to the pile of neglected Ben 10 DVDs that went the same way some months earlier.
Doctor Who though, apart from the Weeping Angels which must never, ever be talked about or referenced in any way, Doctor Who will hold his attention from the first viewing. And we sit and watch it together. And last night as the theme music started up the anticipation filled the air. "It's the new music from the Christmas one!", he shouted, not with the fear that change normally brings, this is Doctor Who, it doesn't have to follow convention, "I like it".
I didn't have a clue what the episode was about. It was something about wi-fi and people with half a head. But The Boy seemed to get it perfectly.
And then, the magic happened.
We live in South East London. In a rented flat that's quite high up. Oh, it's as glamorous as they tell you being a single parent. I just hope that when the bedroom tax kicks in I can hang on to the six en-suites. But being high up has its advantages. It means if you squint a bit you can see some of the London skyline. Including The Shard.
So in last night's Doctor Who Matt Smith rode a motorbike up the side of The Shard. And suddenly The Boy seemed about to explode with excitement. Because what we were watching on television was of course that very instant being beamed live from The Shard itself. "He's there!", he screamed, jumping with delight, pointing out of the window, not sure whether to watch the vista outside or the television inside. "The Doctor's there!"
And I probably should have tried to tell him as I have many times before. To explain that Matt Smith is an actor, that it was all filmed some time ago. That none of this is real. But I saw the excitement. I saw the joy. And once again I remembered what it was to be a child in front of the television on a Saturday night.
Real life can wait for one more day.
I just wanted to say a huge thank you to the sudden influx of visitors to the blog who came via the BBC website this morning. I'm touched, and just a little overwhelmed to wake up and discover we're the second most read article on the BBC. Thank you, it doesn't happen every day!
I will get back to everyone who has been in contact, but it will be when The Boy goes to bed, so may take a little longer than planned! I've loved hearing from you, so do please feel free to get in touch via the contact form here. Alternatively, please subscribe to the blog using the form on the right.
One of the main questions I am being asked is if there are plans to take the show further afield... the answer is hopefully, yes! The show is previewing at the moment, and given we live in the South East that is why so many dates are local to us. After the Edinburgh Festival, if things go well and there is the demand I would love to tour around the country. Childcare is also a big hurdle I need to address with this one, so please bear with me, just know I would love to share our story as much as I possibly can.
Thank you again. Your kindness, funny stories and support are one of the nicest things to wake up too. That, and The Boy, of course (I kind of had to say that, he's been up since 6, getting a bit draining by now truth be told).
A link to the BBC article is here: http://www.bbc.co.uk/news/health-21969439
This morning I was woken at 6.10am with the burning question, "How old was God when He died?". What prompted this I'm not sure, but every answer I gave was wrong. I said He wasn't dead. The Boy asked where He was then. I said He was everywhere. The Boy said He can't be everywhere, He's not here. I said you can't see Him. The Boy said He's a ghost then. I said He's not a ghost, He's not dead. The Boy said where is He then....
IT'S SIX O CLOCK IN THE MORNING ON A BANK HOLIDAY... I told him God died at the age of 48. He finished building the world and then died. "Is he in Heaven?". Yes, yes son, yes, I'm sure he is. Now please go and play on the A205 and leave me in bed for five more minutes.
It's not just God... Heaven was something we talked about a long time ago. Heaven is where Nosey and Fang the hamsters are, together with two Great Grannies, one Grandad and a bird we found at the side of the road. We cry more tears for the bird than any of the others put together. They all live together in Heaven, and have a swimming pool. Everybody in Heaven has a swimming pool. And XBOX Gold Live.
I've told The Boy countless shitty "facts" over the years to make life easier. Most of them in the heat of the moment and then I've regretted them instantly. But once they've been said in his mind they become as real as you and I. When he was younger he refused to wear a seatbelt. One day when he took it off while I was driving round the M25 I told him that if you travelled in a car without a seatbelt on you would crash and die. That has now become a fact set firmly in stone. To this day, he will not let you start the car engine until everybody is securely strapped in and he has done a visual check. Until yesterday...
I pulled out of school and I didn't notice my seatbelt wasn't on. Neither did he. The excitement of two easter eggs and another Gold Award distracted him. Fifty metres up the road I realised my error. I tried to pull the belt discreetly around me without him spotting. I failed.
"I CAN'T BELIEVE YOU DIDN'T WEAR A SEATBELT AND NOW WE WILL DIE AND IT WILL BE YOUR FAULT. WHY DO YOU WANT TO KILL YOUR SON???".
Tears already streaming down his face, the rage filling every part of him, the fear all too real in his eyes.
"YOU'VE MADE ME REALLY ANGRY AND WHEN WE'VE DIED AND WE GET TO HEAVEN I'M GOING TO HIT YOU REALLY HARD FOR KILLING US".
Yeh, look, about this Heaven business, son...
I'm not sure I could work in a special school. I deal with The Boy and his outbursts and challenges because I love him dearly, and because that's the hand we were dealt. But there are so many people who impact hugely on his life because they choose to. And that choice, something I've personally never made, moves me greatly.
There's still a view in the wider world of a special school teacher and the type of thing they do. Hippy types, caring people with long flowing hair who spend their days sitting in a circle playing 'Kum Ba Yah' on the guitar as the children sit around prompted by a couple of smiley teaching assistants to clap in the right places. In the afternoon, maybe a bit of finger painting before rounding off the day with a rousing rendition of 'Go Tell It On the Mountain'.
The reality is a little different. Teachers, teaching assistants, lunchtime supervisors (dinner ladies to you and me) in special schools do extraordinary jobs. And what can be dangerous jobs. They can face a level of abuse on a daily basis that the rest of us would find hard to tolerate. A lot of it from my son. Here's an excerpt from The Boy's home-school diary yesterday. There's nothing particularly 'good' or 'bad' about this day, it's just a snapshot of everyday life. All names have been changed to protect the innocent:
"The Boy had a bad start in class. Refused to do his work, used bad language to Miss Charlton. Threw 2 timers at Miss Greenwich and hit me twice. The Boy was given time-out to cool down. Mr Bromley also asked The Boy to take time-out to calm down but The Boy threw a chair at him.
The Boy did calm, we had a good chat. He said he was upset as he had wet the bed. He did apologise to me.
The Boy had an excellent Science lesson, working really well using microscopes.
The Boy joined in well for Drama, but used a lot of bad language in PE. The Boy has lost 25 minutes off 'Choosing Time' today.
Have a good evening!"
My favourite part? "Have a good evening!". As if none of it ever happened, and tomorrow is a new day. It's one thing dealing with abuse. It's quite another treating the abuser with patience, compassion and understanding throughout.
So, in case you ever wondered, that's why they're called special schools. They're filled with special people. And not just the children.
After every show I always get someone saying it would have been nice to see a picture of The Boy. And I often get the same request for this blog too. So I thought I'd explain why I try to avoid it as much as possible.
This whole thing was my idea. Despite me sharing all the details with him, I'm not sure how much of it he understands sometimes. But given he doesn't even know he's autistic, how can I expect him to make decisions as big as whether he wants his identity shared across the internet? I just know I want him to be defined as being more than just an autistic child. I want him to be defined for who he is.
There's another more simple reason too. The only reason why I'm writing this post is because it's 4am and he's wet the bed. Again. And then gone straight back to sleep the minute it's been changed while I sit wide awake listening to the foxes fight it out over a box of fried chicken remains from Morleys. Do I want my beautiful boy to be known to the world as a bedwetter? I'd rather not, but it's an important part of our life. Tomorrow I will be tired and grumpy and miserable and he will spot this and press all the right buttons to wind me up. So it becomes part of our story, but it doesn't define him as a person.
I don't want to compromise the reality of our situation by having to worry that what I write will somehow affect him. So, he's better off kept out of things for now. I'm not sure if any of this is making sense. It's 4am I don't know if I mentioned that. (The time has no relevance, only to create the illusion that I am an incredibly hard working single dad and so you think I'm an amazing human being. Don't be fooled, I'll just go back to bed once I've dropped him off at school, where I will remain until it's home time. Or they phone, whichever is sooner.)
For those who have an extraordinary desire to know what he looks like, I'll give you this clue. Take a look at the photograph of me that's on this site somewhere. Probably best leave it awhile if you've just eaten. Now shrink it down a bit. Then a bit more. And then another bit more. Meet The Boy.
The other day I took The Boy down to Kaleidoscope in Lewisham. That's the name they've given to the Children's Centre here. Kaleidoscope. It's quite a nice name until you try to write it down or spell it.
Going into Kaleidoscope, chances are you'll know someone in there. Met them at an Occupational Therapy class or at some support group or another. On the whole I like meeting other parents. It's good to listen and share with those who know and understand. But here's the shocker. Some of them are tossers.
There's tossers the world over, but for some reason I thought this sacred group were exempt. But no, it turns out that proportionately it's the same as everyone else - a percentage of parents of children with special needs are tossers.
So when I sat down the other day in the garishly bright Kaleidoscope (we're so focused on the children, with our coloured windows), I spotted a woman and her son from a physiotherapy class. "Fancy seeing you here" I said joking. I'm ever so witty like that.
Then it started.
"We're never out of here. We might as well move in. This is the third time this month. They've never seen anyone like him..." she blurted out. And as her rant trailed off into the background I realised it was too late. I found myself unwittingly playing yet another game of Disability Top Trumps.
For the uninitiated, Disability Top Trumps is a game played by some parents who will try to outdo 'disabledness' on every level and turn it into a kind of a competition.
"Oh, your Jessica sleeps for 3 hours a night? Well... I'm lucky if James here manages an hour".
"It takes you 55 minutes to get ready for school each morning? That's nothing, we have to start getting ready the day before..."
"I'll take your feeding tube and I'll see it with epilepsy and challenging behaviour..."
Disability Top Trumps. I'm not sure why people do it. Or maybe I am. I recognise for some it's purely to vent their frustrations. But sometimes it seems to be more than that. We all want our children to be the the very best at things. We all want them to thrive and succeed. And when the realisation dawns that your child won't be the captain of the First XI, or soloist in the school orchestra, then some people have to find something that they will come top of. Even if that means becoming the best-at-being-disabled-kid ever.
I know this all sounds a bit harsh. And it probably says more about me and my inadequacies than about others. Maybe it comes about because sometimes I feel The Boy isn't disabled ENOUGH. Who am I to moan about my problems when other people have far worse to deal with? There's plenty who have been dealt a worse hand than me.
All I know is, I hate playing Disability Top Trumps. So if you're one of the ones who does it, please stop. I've had parents come up to me after the show and state that they feel like a fraud because "their child is only a bit autistic" or apologising because their children "aren't that bad".
This whole thing isn't a competition. Although it may well be just a game. A game that involves thousands and millions of people, each of them as unique as the next.
Just for once, can't everyone be a winner?
And so life goes on...
This morning we had another disagreement. The Boy says Matt Smith is the best Dr Who. I disagreed. I couldn't really care less, especially at 8 in the morning, but if I want him to talk on the long car journey to school, it has to be his subject choice. I told him David Tennant was the best Doctor. He told me that was rubbish, because "has David Tennant ever fighted a spaceship of dinosaurs? No? Matt Smith has". We kept the discussion going, it's nice when he talks passionately about one of his subjects, he becomes animated and alive.
As 9am approached and the schoolgates were nearing we were no closer to reaching a decision as to which one was the best. I wanted to teach The Boy that there are ways to reach agreement on something in a grown-up fashion. So, I said that when he gets home tonight, to decide who was the best Dr Who, we will do what most people would do in this situation. We will have a dance-off.
He picked the song. Labrinth - Earthquake. And I know I should let him win. He's only ten and he's my son. But, a challenge is a challenge... I've come home and I've been practicing. And let me tell you, I reckon I've got this one in the bag.
My dance skills were the stuff of legend at Drama School over twenty years ago. I know that to this day, people still speak in hushed tones about my solo rendition of 'Vogue' by Madonna. Some of us are just blessed with the agility and flexibility that being a dancer requires. I recognise a few cynical people might point out the reason they chucked me out of Drama School was because I didn't turn up to my dance exam re-sits. But in my defence, if they'd scheduled them in the morning I would have done. It's just that by the third pint, they didn't seem quite so important. Looking back, I think I was just ahead of my time.
So, this evening, at 5pm, to a tune he didn't even know existed until three hours ago, John Williams dances again. And David Tennant will be crowned the best Doctor.
Turns out I quite like things not being normal after all.
There are lots of times when even I doubt The Boy's diagnosis. His cerebral palsy is easy... it's there for all to see, in his strange gait, the way he sits, his tiredness. His autism? So often he seems so far away from that classic definition we all know that I start to doubt it myself. And then I feel guilty, like I'm almost doubting his very existence.
This has all come about because we had a shit morning before school. The Boy kicked off. Big time. He was ignoring me telling him it was time to go, so I turned the TV off. And I know I should have pre-warned him it would happen, I know I should have dealt with it better and followed our routine and timetable. But sometimes... sometimes, you just want your ten year old to do what you say.
He flipped out. The red mist descended and the voice went up an octave into that territory we always try so hard to avoid. Then the outburst began:
THE BOY: Aaaaagh! What did you do that for? Rude man. What a rude man, turning the television off on your son. Rude. So rude. Ungrateful. That's what you are. Ungrateful. Treating your son like that. So mean. Mean man. I wish you were dead. I wish you were dead forever. I want you to walk along the edge of a big cliff and die. Then I'll laugh. Oh yeah, you know what? I'm glad your dad's dead. There. Said it. What are you going to do about it? Do you want me to try and smash this? Do you? Stop ignoring me. Rude man. Ignoring your son. How rude. Are you deaf or something? Got stupid ears?
DAD laughs at this last bit to try and ease the tension. And regrets it instantly.
THE BOY: Laughing at your son now? Laughing at me? STOP LAUGHING AT ME. How rude. So ungrateful. If I have to keep screaming at you I'll get a sore throat and then I can't speak anymore and I'll have to hit you. Would you like that? Would you? I'm going to hit you. Then you can hit me and leave a mark like happened on Tracey Beaker and then you'll go to prison forever and when you do I'm going to come and laugh at you all day. I HATE YOU. Come on, hit me. Wimp. Come on, punch me. Won't even hit me. Wimp. Oh no, you can't, you're a wimp. I forgot...
And so this goes on. And on. Twenty five minutes of it. And I know I should have walked away or done something different. I've read untold books about strategies, visual timetables and social stories. And people offering advice. Sometimes though, I just want a "normal" son. Yeh, normal. I said it. N-O-R-M-A-L. The word that we're not allowed to use. And I instantly regret typing it now it's out there, but if the blog or the show are to mean anything then they have to come from a place of truth. And the truth is, today I want a normal son. Whatever that might be.
Sticks and stones, eh...
We've been out for the day. In the rain. We've been for a trip into Central London. Or The Dr Who Studios, as The Boy seems to know it.
We went past the Houses of Parliament. I tried to explain to him it's the centre of government. No it isn't. It's where the Slitheen spaceship hit in Episode 4 of the first series. Oh yes, of course it is.
I tried to educate him, honestly I did. "Okay 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 they look like this:
You put 2p in. And try to win... 2p. That makes perfect sense to him. And it's another one of his Special Skills. I've worded that as if there are loads of these mysterious Special Skills he possesses. There aren't. There are two. One of them is in the show. This is the other.
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 hone 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, moving round this one machine. The lie of the 2p pieces is examined closely. He'll pause, as if to select a slot, only to move on again. This whole process takes around 30 minutes. And the excitement and tension on his face that he might be able to swap one 2p for another 2p is there for all to see.
Eventually, the slot is chosen. The silence is broken. As significant as the white smoke pouring from The Vatican, The Boy lowers his hand to touch the glass. Then he mutters the immortal words, "it's gonna pay..."
And every time, without fail, it does. We were in the arcades for 2 hours 35 minutes. At the same machine. The same slot. The Boy who the Educational Psychologist said had an attention span of approximately 90 seconds. And in that time he turned 16 pence into £3.44.
Kiss my arse Dustin Hoffman, with your roulette tables and card counting.
2p-Pusher-Machine-Things is where it's at.
For those that have been to see the show, you may remember there's one small part in it where I talk about living in the moment. Children with special needs seem to have a knack and a skill at doing it far better than the rest of us.
And it got me thinking about School Plays. Now, I'm no expert on the subject, having not been to many. When The Boy first started in Reception Class of a mainstream school, he took part in a school play. When I say took part, he was given the role of 'Scene 2'. This difficult, challenging role involved him being walked across the front of the stage in the firm grip of a Teaching Assistant with the sign 'Scene 2' stuck to his front and back. I was particularly proud of him, as I was of the other five children deemed unsuitable to play any meaningful part in the proceedings. Special mention goes to 'Scene 4' who had the brilliant idea to crawl across. I don't know whatever happened to that boy, but I salute him.
The Boy did perform in one play at his last Special School. It was moving, and inclusive, and chaotic, and shambolic, and just brilliant. There was no real story - one class were sheep, another class were Father Christmas, but it was one of the best things I've ever seen to this day. And I've seen more cat videos on YouTube than you'll ever know.
But the frustrating thing while this play was going on was that the children weren't performing to an audience. They were performing to a sea of smartphones and ipads all pointed in the air, recording away, desperate to capture the moment. But moments like that can't be captured on film. Film will never capture the raw energy, the joy of seeing things for the first time. Daddy was too busy to make it so I'm filming it for him? Tough shit daddy, if you can't be there you miss out. That's the way stuff goes.
An older boy told a joke that afternoon. A joke! On stage! For an autistic child that can be huge. And he'd been told people would laugh. He was expecting the laugh, you could see it. His joke got nothing. Not because it wasn't funny. It was brilliant ("why did the sand cry?"... "because the sea weed"). But no-one laughed because they weren't really listening. They were just recording the event for some time in the future rather than enjoying it for what it was in the here and now.
It's not just school plays. It's everything. The next time your child does something in the moment, resist the urge to capture it on film. Savour it for what it is. A moment. And when it's over, your mind will have taken a snapshot of it forever, wrapped it in a bow and stored it deep within your heart on a shelf labelled 'Memories'. It's a secret place, open only to you, but you can visit it any time and share it with anyone.
Any moment you choose.
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.