You know when you buy something for your kids and then instantly regret it? Well...
The Boy has gone on holiday. Alone. For the first time in eleven years he's woken up in someone else's house without Mum or Dad being around.
He's gone up North to stay with his cousins for a few days. We drove up on Monday, then Dad stayed overnight to make sure he was settled into his routine before catching the train to Edinburgh on Tuesday morning.
There were a few tears on the journey. The internal struggle of desperately wanting to spend as much time as possible with his cousins balanced precariously with the fear of staying somewhere on your own. So, Dad decided to try and offer some reassurance to The Boy, and bought him a mobile phone. "For you to call me whenever you want, and so I can call you too...".
He did very well on the four hour drive sitting in the car, and only managed to lose it twice. "Nooooooooo! I've lost my phone!" he cried, with Dad trying to steer the car with his knees up the M6 while searching for the phone amongst the wires and electronic gadgetry that filled the rest of the dashboard (iPad to watch; iPod to listen to; Satnav to countdown the miles to his cousin's house). Charger for each. And headphones. The first time after much upheaval we found the lost phone in his pocket. The second time it was in his hand.
We arrived at his cousin's house. And after a few more tears that night, he seemed settled. He didn't want to sleep on his own, so rather than the spare room his brilliant cousin gave The Boy his own bed, and he slept on the floor on a camping mat next to him. Dad spent the rest of the evening driving his brother and sister-in-law to distraction with a far-too-long description of "things he likes" and "things he needs help with". They were very good at humouring me...
So, very early yesterday I headed up to Edinburgh, torn in two at leaving him while recognising it was a good step for both of us. Every bit of my day was measured with "The Boy will be having his breakfast now..." or "I wonder if they managed to get him to brush his teeth...". The change in routine for him, desperately missing his Dad...
I called him a couple of times on his mobile phone. Well, nine. He didn't answer, but he now had a very polite answering machine message recorded by his personal assistant, his cousin, informing me whose telephone I had reached. I sent him a few texts. Nothing. Then his Aunty called me last night. The relayed message was that he will speak tomorrow as he's busy. Turns out staying with your cousin is much better than staying with your Dad after all.
Oh, and and his mobile phone has run out of credit. It would appear that Alexander Bell got it all wrong, and the telephone isn't a device for keeping in touch with and reassuring loved ones. No, the purpose of the telephone is to repeatedly text the words "poo poo" to people sitting three feet away in the same room as you.
So, next week I head off to Edinburgh for the largest arts festival in the world with thousands of shows and productions and blah, blah, blah. Groundbreaking theatre, hilarious comedy, incredible dance troupes... yet there isn't one single bit of it that will be as good as The Boy's school play was on Wednesday.
It was a production featuring the whole school, right the way through from Reception to Secondary. They'd helped to write it, and even produced the scenery themselves. And true to form, it contained carnivorous plants, Darth Vadar, monsters, Michael Jackson and zombies. It was by far the best play that I've ever seen and I'm not biased in the slightest.
There were the children I've never heard speak before who bellowed their lines like Brian Blessed; there were show-songs sung with more gusto than opening night in the West End and there were so many infectious smiles that kept catching you off guard and making you pretend it was the sweat from your brow you were wiping away.
Then there were the forgotten lines. The long pauses. The unrehearsed outbursts. The bits of scenery that didn't behave themselves. But each of these just added to the whole thing... a little reminder of the gargantuan effort each of the cast were making, a reminder that none of this has come easily to any of them but they're trying so hard and who-gives-a-shit-about-mistakes-anyway because this will always be about so much more than just a play.
As for The Boy? He's never had a line in a school play before. This time he had three. And he'd been practicing his part for days in secret, muttering the words over and over. But the most important line he came out with that day wasn't said on the stage. It was said in the car on the way to school that morning.
"I'm scared about the play".
The first time he'd voiced his fears to me. He'd always hit out before, flew into a rage, thrown a tantrum, screamed like his life depended on it. But here he was at the age of eleven for the first time in his life telling me he was afraid of something. We talked about it. About how it hurt your stomach and made you want to run away and be on your own. We talked about how lots of things are scary, but if you talk about them they don't seem quite so scary anymore. And this boy who at times can be so eloquent over the insignificant had finally found a way to use the words when it mattered.
So that afternoon in the play he peeked through the curtain before to check where I was sitting. And then he walked on stage and he delivered his three lines perfectly, just as he'd rehearsed. And alright, you couldn't hear them in the audience, but that didn't matter. The words were heard where it counted, as every single one of them reverberated through his body and chipped away a little tiny fragment of the fear that has resided there all his life.
Take a bow, sunshine. You will never be anything less than incredible.
Only a few days left at school. The Boy is in his last days at primary, the end of Year 6. It brings back so many memories of leaving primary school myself, that first nod towards the teenage years and the seemingly endless possibilities of the world beyond.
But for The Boy the transition to secondary isn't too hard. Same school, different entrance. It's just a walk across the playground. And as a result, it doesn't seem so important. All over Facebook people write about how they can't believe their children have grown up, how this day is finally upon them, the plans for leaving parties etc. But for The Boy, this is already school number four. Leaving has become as much a part of school as registration.
You see children like The Boy don't get leaving parties. Every school he's left, he's never even been given the chance to say goodbye. The irony is that the children who make the most noise leave school the quietest. Mid-term, mid-week, even mid-lesson. Almost smuggled out of the back door. A few weeks later a parent might ask, "where's such and such?". "Oh, he left", comes the reply, "it was felt the school wasn't right for him".
Don't get me wrong, I understand how incredibly difficult it can be teaching a child who can be as disruptive as The Boy, especially while trying to meet the needs of the rest of the class. I get all that. I'm not questioning the decision. But just because his friendships aren't as conventional as others, it doesn't mean they are any less valuable. Maybe, just maybe, he'd have liked to say goodbye too.
So, looking back on his years in primary education, it's a mixed bag really. The school where he lasted five weeks and only now six years on has he finally opened up about how rough they were with him; the school that continually excluded him day after day because they "needed the evidence for his statement of special needs". The school where he was sent across to the park with his teaching assistant to keep him hidden for the two days Ofsted came to visit. They've all left a mark on him like a badly drawn ink tattoo. It may well fade with time, but it will always be there.
It's not all been bad though. In amongst all that there have been individuals who have touched our lives, and in particular his, more than they could ever realise. Kind, thoughtful, incredible people who have shown The Boy patience and understanding. A child who is different, who refuses to conform, can bring out the worst in some people. But it brings out the best in so many others. There have been teachers, and in particular teaching assistants, who have been nothing short of incredible in an appalling system that makes getting additional help so bloody difficult.
So, there will be no big leaving party next Wednesday for The Boy, no emotional farewell. Secondary school will just be a different room in the same school, with the same classmates and the same staff.
Just the way he likes it.
So, someone won a game of tennis on Sunday. I tried to get The Boy interested. I told him that Great Britain won. He couldn't have cared less though, because he doesn't live in Great Britain. He lives in London.
I like that The Boy has no sporting allegiance. I find it really refreshing. We went to a football match last year, and he decided which team he was going to support when we got there. He picked the blue one. Then when they changed ends at half time he changed to the red one.
The least successful sporting event we tried was the Paralympics. Oh, the irony! Dad decided to book tickets for the wheelchair basketball. Dad had decided that it would be a positive display of disability that would fill The Boy with hope and courage for the future. Sometimes, Dad makes really stupid decisions.
We arrived at the O2 stadium, resplendent in our Team GB colours. We had a good view of the court from the wheelchair viewing area, we unfurled our Union Jack flag and it hung with pride from the balcony. Then we waited. And waited. For an hour. By the time the basketball started, the iPad had been exhausted and the drink/eat/toilet joker had been played too early. Dad could feel this one slipping through his fingers.
Wheelchair basketball is an amazing sport. It's fast and furious. And very, very loud. It's accompanied with upbeat music, flashing lights, people shouting, and not like a football match there's no open sky for the sound to dissipate into. It hits the roof of the stadium and rains back down on you. Six minutes we lasted. For The Boy they were six, long, painful minutes.
The hitting out was subtle at first. Then as the sensory overload increased, so did the behaviour. Pinching, scratching, screaming. I decided to make a run for it. Grateful that we'd brought the wheelchair, I wheeled him out of the stadium into the area outside. By now he was out of control. Trying to hit me any way he could, desperate to bite, to hit, to scratch. Anything. I thought being away from the basketball would make things better, but it just seemed to make them worse.
By this point, two security guards had arrived. They stood to one side, not sure what to do. Watching. And to them it must have looked like a grown man was having a fight with a boy in a wheelchair. We made our way further from the basketball, thinking the further away from the noise we got the more The Boy would settle. He didn't. He was flinging his arms at me, filled with a rage I hadn't seen, even by his standards. And all the time we were followed by security. Just watching. Radios in hand.
The further away we walked the more agitated The Boy became. Security were now calling for back-up. I thought the police would be called, and that sounds very dramatic but it's very hard when someone is hitting you and just wants you to go away but you can't leave them alone for their own safety and you just don't know what to do.
Then along came one of those heroes of the Olympic Games. The volunteers. A Games Maker. And I thought here we go, a do-gooder. He smiled at me, and then knelt down next to The Boy's wheelchair. "What's the matter?", he said to him calmly, "can I help you?". His face was in perfect reach for The Boy. I was about to warn him he'd better move when suddenly The Boy stopped screaming and looked at him.
"My flag", he said.
Then it dawned on me. We'd left the flag tied to the balcony. And so the Games Maker did his own sprint down the corridor and moments later returned victorious like Mo Farah with the union jack flapping in his hands.
"Thank you", The Boy said.
And just like that, it was over. Whatever they said in the papers last year about the Games Makers, every bit of it was true.
So we quietly went home and when we got in we sat on the sofa and watched the rest of the basketball on Channel 4 with the sound turned down and the union jack draped across our legs.
The red team won.
This may well be a long post compared to the others. Apologies. It might not be the funniest one I've written either, but it is an important one.
As the blog has increased in popularity, so too has the amount of criticism levelled at me. Nothing major, but there has been some. Not so much for the blog, but for the show. And not from those who have seen it, I'll hasten to add, although like everything I'm sure it isn't for everyone. But some people have taken offence at the idea of writing a comedy show about life with an autistic child. That I am in some way 'mocking' him, even exploiting him, or making fun of his disability.
I do understand people's concerns, I really do. They are concerns I have levied at myself plenty of times over the last few months, as I've rewritten sections of the show, trying to get the wording and our story just right. And I agree completely with my critics - I would be a hideous father if I felt the show was ridiculing The Boy in any way.
There is joy in our lives, I guess that's the message here. There are jokes and there is laughter. That's what the show is about. I want people to better understand autism, and to understand what it's like raising a child who's different. Our lives didn't become entangled in one huge black cloud when The Boy was diagnosed. There is laughter in our world, sometimes because of, and sometimes in-spite of his autism. Yes, life can be extremely frustrating and challenging at times. But whatever I go through in this journey, it is nothing compared to what he is dealing with daily. But this is the hand we were dealt. And as a parent, and I guess the role-model in this, I can either teach him to succumb to it or together we can stand side by side and laugh in its face.
You see my favourite thing about The Boy is his sense of humour. And I like it because it's the same as mine. And above all I like it because it's the only bit of him I can proudly say, "he gets it from his Dad...". I can make him laugh easier than any audience. And vice-versa. And I know I'm biased but honestly, he's the funniest boy around. But it takes time for people to discover that. And there's only a few people in his life who have taken the time to get to know him. Properly know him. And although the rewards are rich, there are times where you have to see past a whole load of stuff and behaviours to get to that bit of him. The show and the blog enable me to do that. The comments where people write what an amazing son I have, or how brilliant The Boy is, will always be treasured. Because until this point nobody has told him that enough. And a child can never hear too many times just how extraordinary they are.
I think it's the stand-up comedy bit that makes people nervous. If I'd written a piece of theatre people would be far more comfortable with the idea. We've become so used to comedy being a divisive thing, that there must surely be a target - for there to be humour, we must be mocking someone or something in some way. Especially where disability is involved. I don't necessarily agree with that, but if there is a 'target' in the show, then it's other people's perceptions. It will never be autism. And it certainly will never, ever be The Boy.
We all want to do all we can for our children. I gave up work long ago when the idea of The Boy spending a full day at school was a far-off dream. And despite the Daily Mail trying to convince you otherwise, life hasn't always been a bed of roses when you're reliant on disability benefits and carers allowance. But The Boy is finally in a school that understands him, and things are more settled than they have been at any point in his life. And so I will use all my skills to build him as secure a future as possible. If I was a mechanic I'd build the fastest car. If I was an artist I'd paint a thousand pictures. But I'm not. All I can do is write and tell jokes. And there's an old saying that the best comedy comes from what you know. And so I will write and tell jokes about what I know to the best of my ability if it means he has even the slightest chance of a more secure future than I can offer him currently.
For the first time in my life I have a platform to shout to the world what an incredible, amazing boy he is. And knowing people are not just hearing me, but are nodding their heads in agreement is an extraordinary thing. And maybe, just maybe, it means in the future people might give him, and so many others like him, more of a chance. And maybe we might all try that little bit harder to try and understand what it truly means to be different.
That's what I want this to be about. But above all, let's never forget that laughter is a good thing. It may even be the best of things.
Hello dear reader, I'm sorry it's been quiet for a week. The Dad has had a cold/stomach bug thing which is the worse thing anyone has ever had in the entire history of all mankind and although it was touch and go on Wednesday, today he is confident he might just pull through.
The Boy has been unwell too. Obviously he has had a much milder form of whatever bug we'd caught. He will have to wait until he is a full-blown male before he has really learnt to milk the situation for all it's worth. He's feeling much better today though, but there's one thing this week has highlighted for both of us... The Boy can't blow his nose.
I thought he could - he's always made out like he's blowing his nose in the past. Admittedly, it isn't something he's done particularly regularly, much preferring a wipe with the arm of the school jumper, but he at least knows to put the tissue over his nose and blow. However, I'd never noticed before... he doesn't blow. He just makes the noise with his mouth. And I've never noticed because the tissue is covering it. Only this time he really wanted to clear his nose as it was irritating him. And he couldn't understand why it wasn't working.
Now my teaching capabilities have been covered elsewhere in this blog. I'm not the most patient person in the world. We've had lessons over the years in some topics that I thought The Boy would eventually just pick up, but I've since realised had to be learnt and mastered. We've had the knife-and-fork lesson using play-doh sausages and peas (success!); the cleaning-yourself-after-the-toilet lesson (a definite work in progress); the putting-on-socks lesson (a resounding fail). I've dreamt that one day we will get to the shoelace lesson. And being the Joint Managing Director of a Computer Shop means one day he may well have to learn how to fasten a tie too. But the hardest lesson I've ever had to teach is how to blow your nose.
I'm sure somewhere there are guides for this kind of thing. But I failed. I tried to cover up one nostril at a time for him, but I was accused of smashing him in the face. I suggested he close his mouth tightly shut but I was accused of suffocating him. But the most frustrating bit was that after each attempt we had to use a clean tissue because "that's what you do after you've blown your nose". We went through a roll and a half of loo paper and hadn't succeeded in blowing our nose once.
So, I still haven't taught him. And The Boy was getting more and more frustrated. I was unsure how we'd made it to eleven years of age without it being an issue before. Then suddenly it dawned on me... every other time The Boy has had a cold it's been Winter. But in the warmer weather he's been wearing t-shirts. Today I put him in a long sleeved top. Success. He can once again empty his nose on his sleeve to his heart's content.
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.