​Ah, well, seven months on since I said I’d write a new blog every couple of weeks, and here we are… I’m not sure what my excuse is, the dog ate my homework won’t quite cut it I don’t think. It’s all too easy for me to suggest that The Boy has been struggling and leave it at that, but maybe I should be honest and just say that I lost my way for a bit. Lost my confidence in my writing, my parenting, and all the rest of it. So no more promises about when the next blog post will come – it will come when it does, let’s just leave it at that for now.
 
There’s been some lovely things within the fog of the last few months. A bit I recorded for Radio 4 earlier last year was selected as one of the BBC’s Magic Moments of Radio 2015, and also featured on Radio 4’s Pick of the Year 2015. You can still listen to it here.
 
The book is finally scheduled for release on 1 September 2016. I’m sorry for the seemingly endless delays, I’m confident the date won’t change this time. Things going on at home meant I had to be certain the timing was right, that’s all.
 
And so on to the most important person in all this, The Boy himself. Even using the phrase ‘The Boy’ seems strange nowadays – he seems so much older, so much more grown up. There isn’t a day that goes by that he doesn’t amaze me by just how far he’s come. In my last blog post I said I wouldn’t update his story further, but I feel I owe you a few words to let you know how he’s doing.
 
The short answer is, he’s doing well. Very well. He’s as tall as his Dad nowadays and likes to lean cockily with his elbow on my shoulder, just to remind me. He’s not sure about the prospect of getting older though, and still has his reservations. “I don’t like growing up”, he told me a few weeks ago, “the floor looks further away.”
 
He had some surgery on his legs at the end of last year, and surprised us all by how quickly he recuperated and went back to school. As a result he’s more mobile than he has been for a while, although the wheelchair is still very much around for him to leap out of at a moment’s notice.
 
New school continues to go very well. And I continue to hesitate every time I say that. The anxiety since his treatment at his last setting hasn’t really gone away, and I’m not sure it ever will, for either of us.  I’m a bit more knowledgeable now than I was though, less likely to accept things on face-value and far more likely to challenge when I think something isn’t right.
 
A couple of weeks ago The Boy was going on his first school trip. Paintballing. Yes, I know… visions of PJ and Duncan in Byker Grove flashed before my eyes. I hesitated over the consent form for a while, but after a few nervous phone calls with The Boy’s mum, eventually signed on the dotted line.
 
The Boy was also nervous about going along. He was fine with shooting other people, that bit was easy, it was the prospect of being hurt himself that caused the issue. The morning he was due to leave, he was up early, having barely slept, pacing the lounge.
 
“You’ll have a great time”, I reassured him, “you’ll love it. I remember when I went paintballing and I was a bit scared at first but then I really liked it.”
 
The Boy stopped pacing and looked up.
 
“You’ve been paintballing?”, he said.
 
I nodded.
 
He grinned, and all the anxiety that was on his face suddenly disappeared.
 
“You like paintballing”, he said relieved, “and I look like you! That means I’ll like paintballing too…”
 
Ah, go get ’em, soldier. Walk tall.

I've got an idea... Why don't I write a blog post back in July declaring "we're back", and then write nothing for three months? Brilliant...

Sorry once more for the silence. I hope this post explains it.

We'll start with the good news... Next week The Boy returns to full-time school for the first time in twelve months. New school has been incredible so far - outreach at home, visits, trips to the cafe and crazy golf, meeting other students, all before he's had his first lesson. The Boy is beyond excited, and was even disappointed to discover it was half term and he had to wait a week longer. It's been lovely seeing him enthralled about school again, especially after everything he's been through. As for Dad? Well, Dad's a bit more reserved. By the time you get to school number five, you become a bit more hardened to it all. I'm nervous - nervous about trusting another group of people, nervous about it all going well for the first few months as it always does and then... and then. Like most things in life, only time will tell.

It's been a difficult 2015, and it's thrown things in the air a great deal, for both of us. As mentioned on a previous blog, the book is now scheduled to be released early next year. I'm incredibly proud of it, not least because for once in my life I bloody finished something I started, although I keep wanting to rewrite vast sections of it. But the book was always easier to wrap up than the blog - by its very nature it had to have a beginning, a middle and an end, and I was always clear in my mind what the end would be. The blog... the blog is trickier. This one was always going to be an unfinished story.
​
Here's the thing that has made updating the blog so difficult. The blurb on the right of this page states that The Boy is twelve years of age. He isn't. He turned thirteen many months ago, but I haven't updated it. I don't really want to. A 5ft 10in hormonal teenager who has been through a pretty horrible time forced to spend every day with his miserable Dad for reasons he can't understand in a flat that isn't really big enough for the two of them... you get the picture. Let's just say I'm sure Laurence Llewelyn Bowen would have a field day with the lounge. And yet I don't feel I can write about any of it, because I absolutely know The Boy wouldn't want me to, and the alternative feels like I'm sneaking off and doing it behind his back. 

I don't want to paint a picture of absolute desolation - there have been good times over the last few months. We spent some incredible days in the summer when we drove across to France with friends, we even managed a trip in an aeroplane and braved an all-inclusive week in Bulgaria (one of the benefits of Dad's school - cheap, term-time holidays), and we've had laughs and moments of absolute joy. But if I just write about the golden times and conveniently forget to mention the dark shadows that have loomed across every snapshot like a forty-a-day smoker's lung x-ray, then I paint a picture of our lives that just isn't true. 

I can't tell you what a joy it has been to come and sit at the computer, and write. As a child I remember writing stories about a superhero insect called Super Goodlebug, or about some other creatures I came up with whose name escapes me now but who lived in the fridge and tried to escape Electra the wicked witch who lived in the freezer and wanted to turn their world into ice. I'd forgotten the joy those stories gave me, and writing the blog has brought back the magic of those times once more. It's taught me to look for the positive when it isn't always there, and despite the current difficulties I have no doubt that it's been the very best thing for both of us. Having spent a lifetime of people telling you how difficult your child is, or how challenging... having people see him for exactly who he is, and what he's capable of, it has been nothing short of extraordinary.
​
But for now, it must come to an end, at least in its current form. I want to write honestly about what's happening, and I just can't do that at the moment. The teenage years are fraught for so many reasons, and I must respect that. For now, The Boy's story will remain his. In my wildest dreams I imagine me and him sitting side by side in years to come looking back and writing a reflective account of this period together, but that will be entirely his choice. Who knows?

My plan is not to disappear though. Now The Boy is returning to school, I have more time on my hands. I plan to write weekly (maybe that's a bit ambitious, let's start with fortnightly) about different things, mainly autism and disability related. I will of course let you know how The Boy is doing from time to time as well. I may well revisit past times in our lives too, looking at when The Boy was younger, I don't know yet. I'm looking forward to writing, and we'll see where it takes me, and I really hope you'll stick around as well. I hope you understand the reasons for this decision.

As for the show? Well, The Boy is still twelve in that as well, and has been for some time. I've loved going out and performing it, meeting other parents, adults with autism, professionals, and just remembering to look for the laughs once in a while. As unconventional as it is, it's been my respite. It's been a chance to give something back too - the show has raised over £30,000 for numerous autism and disability charities. I haven't shouted it from the rooftops before, but I've never really charged for it - if you are a registered charity or support group looking for a fundraiser, if we can make the dates work I'll come along for travel expenses. So for the foreseeable future the show will continue, but once again the story won't be updated - The Boy can live on as a twelve year old Peter Pan for a little while longer. 

Right, I've banged on enough. For those who have stuck  to the end, it felt right that I give the last word to The Boy. He's happy I share this story with you...

A few weeks ago we went to visit Nana once more (I do parent on my own occasionally, honestly). The Boy loves to go off for a drive with Grandad and Monty, the dog. Each trip is the same - they head to a spot by the river where they climb a stile and Monty paddles in the water. The last time they went, Grandad sat on a nearby wooden bench, and asked The Boy to sit with him.

"I'm not sitting on a grave", The Boy said indignantly.

Grandad was puzzled. "Come and sit down", he said, encouragingly. 

"No! I'm not sitting on a grave", The Boy replied once more.

"Come on, keep me company", said Grandad, getting more and more bemused.

"Not on someone's grave!!!" The Boy said. Finally, he pointed to a small brass plaque in the middle of the bench.

Grandad peered over to read it. 'In Loving Memory of Ala....'

​

Thank you, for more than you'll ever know.

This is the second of two blog posts. Part one is here.

Sometimes, it takes time away to appreciate all that you have. We had a brilliant holiday up North with family. We visited the same old places we always visit, but this trip was different. I’m not sure what it was, but after everything that’s happened, those few days away made the world seem okay again. After months of reading and writing reports and assessments endlessly detailing all that The Boy can’t do, I’d forgotten to keep looking for everything he can. And it made me realise that if you spend your life focusing on everything that’s wrong, it means you might just miss everything that’s right.  

While we were away we revisited an aquarium we’d been to when The Boy was younger. He didn’t remember having been there before, but I do… He was around 6, and having spent £20 to get in we spent a total of twelve seconds in there with him shouting one long  “NEMO!!!!!!!!!!” at the top of his voice as he ran the length of the place before we exited out to the daylight at the other end.  This time, the darkness didn’t bother him so much, we stopped to look at each tank, taking everything in - we even sat through the sea-lion show. I hadn’t noticed it before, but there’s an inquisitiveness to him nowadays, a desire for knowledge that was always missing as a toddler. And as I looked around at the enthralled three year olds sitting around us watching the sea-lion jump for the ball, I realised our lives weren’t so different. I can’t quite explain it, but in some ways it just feels like we’re living our lives on a different time trajectory to everyone else, that’s all. Like The Boy will get there eventually - he’s just following a different path.

There was so much we did in those few days away. We caught up with family we haven’t seen for a long time. Their reaction to seeing The Boy is always the same – they’re always struck by how much he’s grown, but also by his similarity to me. Despite how often I’m told it, I can never see it myself, but apparently we don’t just share the same dashing good looks, but the same mannerisms, even the same sense of humour… nowadays The Boy’s mum often refers to him as ‘Mini-John’. How blessed he is…

We went to a barbecue where The Boy had his first go in a hot tub, and then refused to get out until his skin had turned blue. My brilliant cousin arranged for him to have a tour of a police helicopter. And back at Nana’s house The Boy played endlessly with Monty the dog, lying on him, pulling him, and apparently teaching him to ballroom dance.

Magical times.

But the highlight of our holidays were our trips to the seaside together. Short daytrips away – the seaside is only twenty minutes from Nana’s house. And there’s something about out-of-season seaside towns (and that’s when this was, despite my tardiness in writing about it) – there’s a beauty to them – less traffic, fewer people, they become a memory, a flashback, of a different era. And those days with The Boy reminded me of my own childhood more than ever. And most importantly, it was on these trips out that I really noticed the sparkle return to The Boy’s eyes.

We went on an open top bus tour and had the whole top deck to ourselves, trying to scream as loud as we could into the wind…

A seagull nicked the Boy’s chips on the seafront as we sat and watched a Punch and Judy Show - The Boy giggling away as Dad sat open mouthed as Punch hit his wife Judy and threw their baby down the stairs. Oh, don’t worry if you’re thinking that sounds inappropriate  – Mr Punch soon got his comeuppance when the Hangman threatened him with a noose and the Devil attacked him with a knife… The Boy loved it.

Then I wheeled The Boy along the pier in his wheelchair, having races with unsuspecting old people in their mobility scooters. We found an old joke shop Dad used to visit as a little boy, and we bought some fake poo and a fart whistle. Given that neither of us knew what a fart whistle was until that day, it’s become such a part of our lives since that it now seems strange to imagine a world without it.

But the highlight of it all was when we returned a few days later. When we go to the seaside we always park outside The George Hotel – named, apparently, in honour of The Boy’s cousin. Well this day there were no spaces, so we found ourselves in an unfamiliar part of town. And as we’re walking along to the seafront, I spotted something – a fish and chip cafe I remembered going to as a child, which I thought had long gone. Thirty years later, there it was, on the corner, where it had stood all this time.

The Boy didn’t need any convincing to go inside, his escapade with the seagull a couple of days earlier had put him off al fresco dining for life. We took a table in the corner, where we’d sat as a family, a generation ago.

And it was there, in that cafe, that I finally saw what everyone else has been telling me since The Boy was born. As he tucked into his fish and chips he looked up at me and grinned. How had I missed it for so long? It was plain as day. Sitting opposite me, I could see myself. It was me as a child, exactly the same age. Unmistakeable. Smiling away, looking up into my Dad’s eyes and knowing there was no place on earth I’d rather be.

And as I sit here writing this now, I can hear my Dad’s voice once more, bringing me back down to earth with a bump.  “How much? Eighteen quid for two portions of fish and chips!?!  Christ on a bike son, you’ll never be me…”

Well, isn’t it typical, you wait forever for a new blog post, and then two arrive at once… One of them is a dull, boring, important one, and the other is what I really want to write, but I feel I need to explain a few things, so we’ll deal with the dull, boring important one first…

I’ve wanted to come here with good news about a new school for The Boy for a few weeks now, but each time when I think I can say something there’s been a new level of bureaucracy in the way. The past seven months have been a life on hold – a never-ending wait for calls to be returned or emails to be answered. If there’s been one lesson learnt from it all, it’s that when dealing with local authorities there’s a direct correlation between the number of people you cc on an email and the speed of the response it produces. We were allocated a Senior Case Officer to deal with The Boy’s schooling – by the end of the process I was cc-ing the manager of the manager of the manager of the senior case officer. I wish that was a joke  - the only thing that stopped me going another level higher was the position was vacant.

However, for all my moans, it seems it might have been worth it. I don’t want to get too excited, but after months of new reports, assessments and badgering emails, things finally appear to be moving in the right direction. To cut a long story short, a school feel they are the right match for The Boy… but they have no current vacancies – they’re oversubscribed, as all the decent placements appear to be. They’ve offered a brilliant package of support, and above all else, they have accepted him unconditionally – no “we have some concerns”, no “let’s go for an extended trial period”, just a very big “we’re confident we’re the right place for him”.  I don’t know how long it will be for a place to become available, it could be months into the new school year, but I’m a strong believer that good things are worth waiting for. I’m nervous and I’m wary, but I’m also quietly optimistic, and that’s better than life has been for a while.

As for the other murky news in our lives, given the investigations that are ongoing there’s still not much I can say, and there is unlikely to be for some time. Following another appalling event that happened at the school recently, I can’t see how things can continue for them much longer, but that relies on having faith in the authorities doing what they say they’ll do. I can’t pretend what happened to The Boy, and his treatment at the hands of people I trusted, doesn’t still play on my mind every waking minute. It very much does. However, I’ve become used to the notion of relativity in this world - the idea that there will always be someone worse off than you, or doing better than you. And that’s never truer than in the world of disability. Follow any autism group or individual on twitter or facebook and you will discover social media is awash with horrific stories of people with learning disabilities incarcerated hundreds of miles away from home, or even dying as a result of shoddy care. And so I find myself in a strange situation where I’m counting my blessings, that the mistreatment The Boy has gone through is all that has happened to him. Is that really as good as it gets? Sadly, at the moment, in 2015, it would appear to be.

It’s fair to say the events of the last seven months have thrown our lives into the air a bit, and as a result some of my plans too. I’ve had some emails from people asking about the book, and when it will be published.  I’m really sorry for the delay - it just hasn’t felt right, releasing something so personal to the world when life for The Boy has been so uncertain. By its very nature, ours was always going to be an unfinished story, but I needed to know that things would improve for him and that life would get better before I made any decision on that front. My publisher has been brilliantly kind, patient and understanding, and things are moving forward again.  As soon as I know a definite date, I will be sure to let you know. Thank you for your patience – I hope it might just be worth it.

As for the blog, I can’t make any promises, but for now we’re back, so let’s see how it evolves. As The Boy gets older, I still continue to struggle with how much of our lives to share. But I will say that I think I question things too much. Writing the blog, and looking for the positive in situations where it isn’t always obvious has been an incredible life lesson for both of us. I need to remind myself that we are both infinitely stronger and enriched as a result of sharing the good times, and every now and then, the not so good times. And that can’t be a bad thing.

Now, if you’ll excuse me, I have a second blog post to write, and it’s much better than this one…

It's been a couple of weeks since I last posted with our 'news' and I just wanted to say a huge thank you. There's so much comfort to be had from the shared indignation and disgust at what has gone on. There's a whole lot more I want to say, but can't as yet... I've been overwhelmed with the offers of support though, and am slowly (make that incredibly slowly) working through all the emails and messages. Thank you so, so much. On the whole The Boy appears to be doing well, although I do worry what goes on beneath the surface. The other day I cut his fingernails despite his protests, the first time in months they haven't been bitten and chewed away, so I'll take that as a good sign at least. I will update on the situation as and when I can.

It's very hard highlighting shoddy or poor care in our schools and care homes, since in some ways it becomes a self-fulfilling prophecy - a sector that already suffers from low staff morale, poor retention rates and salaries far too close to the minimum wage. It's a difficult balance to get right - there are far, far too many cases of abusive, outdated practices that it can't be overlooked and not talked about, yet in doing so it feels like we're snubbing and even worse, endangering, some of the genuinely outstanding care being delivered day in and out by people with an absolute love and dedication for what they do. (Oh, and Mr Ofsted, I mean 'outstanding' in the true definition of the word, not in your soiled version where it's just about how pretty the filing system is where the policies and procedures are kept).

And so, in the interest of balance, I thought I'd make the rest of this blog an advertorial for decent people. Of which there are many. We'll start with Annette and Tracey from Express CIC, not least because they'll squirm reading about themselves the most. I've written before about Express, and their goal to create a 'hub' in the community for those with autism and their families and carers. Well, a few weeks ago their goal moved a step closer when they moved into their first office. Me and The Boy went along to visit them - parking is a bit of an issue, the front door needs to be made accessible, they've got no signage, there's a whole load of jobs to be done. But inside it's as warm and friendly as you can hope for. They've started running their first drop-in advice clinics, and they looked all grown up sitting behind their donated desks with the one computer between the two of them. It's taken them months of sheer determination, all on a voluntary basis, to get this far. After so many knockbacks I'd have thrown the towel in long ago, but they just keep going through seemingly endless bureaucracy. It sounds so patronising and I don't know how else to say it, but I'm so proud of everything they've achieved, because I know just how much effort it's taken. The Boy was very impressed with the office when we visited, not least because it had wi-fi and biscuits. He liked meeting Annette and Tracey too, but I should apparently have informed him in advance that "one of them was small"...

So, not long to go until the arrival of the big man. The Boy is very excited, and is convinced he's going to see him again this year. I say again, he's a bit vague on the details but apparently the two of them met in the early hours of 25th December some years ago... Old friends nowadays.

To try and inject a bit of Christmas spirit I tried to think back to some of the wonderful things I'd done as a child at primary school that the two of us could rehash to add some festive joy to our lives. I thought we could maybe create a Christmas Log for the mantlepiece by taking a normal log, wrapping one end with a bit of tinsel, sprinkling some washing powder on it and glueing a piece of holly to the top. That was frowned upon. Then I suggested we could make a Christmas calendar by sticking an already perfectly functional calendar to the bottom of a Christmas card. No chance. Kids of today. I got the hump and decided I wasn't going to show him how to make a paper Chinese lantern even if he begged me. He'd never know the joy involved in colouring-in a paper doily with a felt tip pen. His loss. 

Then a couple of days ago we went to Aldi, and found a 'Gingerbread House'. Perfect. It's already made, you just have to decorate it. That's Christmassy, that'll get it us in the mood. Look at it, it's a thing of beauty:

This is ideal, I thought. I'll even get a blog out of the finished product. All we had to do was recreate the image on the front of the box. We could do that, easy. It turns out though that once again attention to detail isn't quite our strong point... 

I'd show you the other sides of the house, but... they're blank. We didn't last that long because gingerbread houses stink of ginger. Who'd have thought it...

I kept on racking my brains. There must be something we can create for Christmas. Then The Boy came up with the perfect solution. As always, I was too busy trying to put my own ideas on to him, when he didn't need my help. He would design a Christmas Robot for the future. He went off to his room on his own. After much banging around and searching for paper, he started. He's incredibly proud of what he's come up with. Originally he said I couldn't share his design with you, as it was to be kept for a long time in the future when he was twenty one or something. But today he agreed I could add it to the blog. Ladies and gentlemen, it gives me great pleasure to unveil the prototype of John the Robot:

There you have it. The perfect Christmas Robot, suitable for any family occasion, complete with Stun Knife, Stun Spikes, Rope and Gas. 

"Daddy, do you know why I called him John the Robot?"

"No son, why?"

"It's so that when you're dead he can make me my dinner".

"..."

Thank you as always for dropping by this year. On behalf of the two of us, Sky and Fluffy the guinea pigs and John the Robot, I wish you and your loved ones an incredibly happy, chaotic, brilliant, joyful, different, unique Christmas xx

The Boy has been off school again for a few days. I'll leave it to you to fill in the blanks as to the reasons why... So, instead he's been "helping" me with some tasks. He's had an insight into just how exotic life is in those magical hours between 9 and 3.30 each day. Yesterday... I took him to the tip.

The Boy has wanted to go to the tip for some time. The tip, Disneyland Paris and New York have been part of his destination wish-list for quite a while - I was happy to oblige on at least one of them. Now I know some of you might be thinking I'm some sort of a cheapskate for choosing the tip, but please wait a moment before you judge me. This was no ordinary trip to the tip. I hired a van.

They say in London you're never more than six feet away from a rat. Or a Zipvan. These are vans dotted around the place to help you transport items that won't fit in the boot of a Toyota Aygo - so pretty much anything from the size of a thermos flask up. After booking online you open the van with a card reader on the windscreen, and the key is in the glove box. All automated, no people involved in the process at all. For The Boy, the perfect transaction.

So, we got our van, and we loaded it up with rubbish. Well, I say we... The Boy went into his bedroom with his bin bag, and announced he was going to empty his 'toy chest'. Don't go all romantic on me imagining this large, antique walnut box next to the rocking horse in the corner of the bedroom filled with wooden toys handed down from generation to generation. Think more of a nine quid box from IKEA filled with dried up Play-Doh and crappy bits of moulded plastic in every colour and shape known to man.

The crashing noise that came from his bedroom told me that he'd just tipped said box upside down to begin his big sort out. Then it started. "This is my first ever toy I got from a Happy Meal!" he beamed, holding up a spaceship thing, "I'd better keep that". "This is my favourite toy for the bath!", was the next one, wondering where the naked Action Man had got to, chosen primarily as a bath toy for its ability to make the biggest splash. "I'd better keep that". "Scooby Doo!!! I wondered where my Freddy had gone. I'd better keep that..."

"I'd better keep that"... The only thing that made it into the bin bag yesterday was a piece of bright yellow plastic piping - a corner piece from an old marble run game. I should probably have insisted he throw a bit more out, but I could see on his face just what all this stuff meant to him. To the untrained eye it was just a pile of old junk, but In that mish-mash of everything, he saw order. Each plastic toy wasn't just a memory, it almost seemed like an anchor, something to keep him secure. Safe. 

So I loaded up the van with the rest of the stuff, every now and then The Boy looking up from his ipad giving me a very useful commentary as I carried it down the three flights of stairs. "That looks heavy". "Yes mate, it is..."

We climbed into the van and put the windows right down, put on The Boy's song of choice (Ed Sheeran - Lego House for the uninitiated) and drove to the tip singing away at the top of our voices. Dad even rested his elbow out of the window. And if I'd had a Yorkie bar I would have taken a big bite out of it and then thrown it down on the dashboard in a manly fashion. A father and his son, just trucking. In a Zipvan.

After a bit of an argument with the man as to whether you can bring a van into the tip or not, we started to unload. The Boy loved it. So sensitive to noise, unless he's the one creating it then it doesn't matter one bit. He loved throwing rubbish into the containers to hear the noise as it landed and smashed the things below. The most satisfying noise it would appear is a microwave landing on a television. And then as we unloaded the last bin bag, it split open. I can't really complain, I got them from the pound shop, the fact that they managed to be both black and transparent was a bit of a give away... Out fell a load of old papers that Dad had been trying to sneak into the General Household Waste section without the man seeing. And in amongst them was a piece of bright yellow plastic piping that fell to the floor.

The Boy looked up at me, a big grin spreading across his face like he couldn't believe his luck. He bent down to pick it up. 

"I'd better keep that", he said.

"Yes son, you better had..."