When you’ve forgotten the password to update your own website you know it’s been far too long… I read an article the other day that said we should stop saying ‘sorry’, and replace it with the words ‘thank you’ and we’ll feel much better about ourselves. ‘Thank you for waiting forever until I suddenly decide to randomly write something else’ doesn’t quite seem to cut it, so we’ll settle on a big fat sorry on this occasion.
Those who have been around here for a while won't be surprised to hear the delay in writing was largely down to me, and my worries having (finally) put the book out there. I’m sure most authors look forward to publication day, but for me it loomed on the horizon like Armageddon. Not sure why – my own insecurities, the worries that it might not be the right thing for a parent to do, all that kind of stuff.
Well, Armageddon didn’t quite happen. The day passed as quietly as any other, and so has every day since. People have written lovely things about the book, and I’m delighted it has touched so many. I’m slowly getting round to replying to all the messages, but there’s also other emotions involved when I read through the emails – a quiet rage that things haven’t changed, that so many families are still waiting for diagnosis; or the right school; or the elusive CAMHS appointment; or all the rest of it. Then you turn on the TV and there’s the Dispatches programme of hideous institutional abuse or some posh woman banging on about paying disabled people less than the minimum wage. Much like our own families, where you hope we learn lessons from the generation before, so I had hoped change might come along quicker than it actually is. One day…
My biggest fear was, as always, for The Boy, and how he’d feel about putting our story out there. I mentioned on a Facebook post how he came with me to the publishers to collect our first copy. He kept taking copies into school with him for weeks afterwards, and is prouder of OUR book than I could have ever hoped. We pop into WHSmiths or Waterstones when we’re out and about and see if we can find it on the shelves. He has his favourite parts – the ending, or the page that mentions his cousins and friends. I can tell the copies at home he’s delicately flicked through by the broken spine and finger-marked cover.
I've mentioned before how different 'The Boy' from the book seems to the near-fifteen year old I now share my life with. Then suddenly that little boy will appear again, like Monday morning on the drive to school when we were trying to decide what voices different Pokémon characters might have and he giggled and laughed and once again he could have been in his car seat, driving to nursery all those years ago.
I thought I’d share with you one little update with his permission. A couple of months ago he discovered a girl at school who he liked, but there was one major stumbling block - he didn’t know how to talk to her. Each night I’d make suggestions, but the next day he’d come home, not having found the words. Eventually, we came up with a plan.
He’d go to school with a packet of four Oreo biscuits (well, ‘Neo’ – the Lidl equivalent. Still classy). The plan was to wait until morning break then go up to her and ask her if she’d like a biscuit.
It was foolproof. For three days running he left for school, fake Oreos in hand. Each day I sat at home, contemplating whether to ring Moss Bross to hire a dress suit for the big day. Eventually at the end of the week I couldn't wait any longer and asked him how it was going.
“What?”, he said.
“The biscuits! Have you been speaking to her?”
"Nah", he replied.
He laughed and shrugged his shoulders, “I couldn't help it. I just kept eating them”.
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.
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.
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"...
Express are desperate for funds, and one way to help them out is with the Aviva community fund - it costs nothing, you just need to register to vote. As I'm my usual last minute self at writing this, the last day you can vote for them is today (Saturday May 30th). They currently have half the votes of an organisation who want to dredge the local pond, which probably says more about our society than I'd like it to. Please, give them a vote, if only to stop them emailing me. You can 'like' Express on facebook here, and follow them on twitter here. They're brilliant, and so are you for supporting them. Oh, and they've got a comedy night on June 18th to raise funds too. Details here. I'll shut up about them now...
One final shout out for decent people, then I promise I'll go back to slagging everyone off again... The #LBBill is making ground, and with a Private Members Bill ballot due on Thursday June 4th, they're asking everyone to write to their local MP before then to express their support. The more MPs that can be reached the better. If you're unsure what to say, or how to get in touch with them, here's some help here. Please try to find the time over the weekend to send an email or tweet your support.
Thank you so much, to decent people everywhere. We're going away for a week or so to spend some time with family - the beauty of Dad's School is that the holidays are pretty flexible. I promise I'll update you with the good times x
Hello stranger. I haven't been around on twitter or facebook for weeks now, if not months, and I owe you an explanation. In the past I've written happy blogs, I've written sad blogs, but I've never really written an angry blog before. Anger isn't an emotion I do particularly well, even at 43 years of age, there's still a very real danger that halfway through I'll just burst into tears, scream something incoherent and storm off to hide under my duvet. So bear with me...
A couple of weeks ago I recorded a talk for Radio 4. It was broadcast last week. It's the usual stuff I suppose I've become known for - funny stories with a heartwarming twist at the end. I didn't share it with you, and there's a reason for that. When I started all this, I didn't really want it to be all light and fluffy. I wanted the humour to be a way in to some of the struggles, not to mask them. In the Radio 4 recording I also talked about some of the reality - the darker stuff that never gets mentioned. Excessive restraints used against people with autism; treatment and assessment units where individuals are held, sometimes miles from their home, and where some, like poor Connor Sparrowhawk, unimaginably paid the ultimate price. That's the reality of services in the UK at the moment, and I wanted to give a brief insight into that.
An hour before the show was broadcast, I received an email from the producer to say that due to 'political bias' they had to edit out some of what I talked about. You can guess the section that found its way to the cutting room floor. I'm not really being critical of Radio 4 - it was the eve before the General Election, I could have worded things better, and maybe the reference to Guantanamo Bay was a bit strong. I'm saddened though that the abhorrent way we sometimes treat the more vulnerable members of our society is seen as a political message. It isn't. It's definitely a human one.
And I suppose really I'm angry with myself for sometimes painting a picture of our lives being joyous and uplifting when at the moment the truth is far, far from that. Yes there is light, but to counterbalance that, there is much that is dark. I have stated before that I can't really talk about our current situation with the education system until investigations are complete, well at the rate things are going The Boy will be in his fifties and I'll be long gone before that day ever occurs. But if there was ever a reason for starting all this, it was to make the world understand him and his peers better. And as a result, maybe treat them just a little bit better than they have historically. And by not talking about these things, I do a far greater injustice. So, I've decided to share some of what has been going on with you. It isn't all that has happened - far, far from it, but it gives a brief insight into life at the moment, and I hope it gives some balance to the light. I won't name the school concerned, at least not until investigations are finished, but suffice to say they describe themselves as 'pioneering leaders in education for children with autism'.
Just as a bit of background, there were certainly brilliant people within the school. The Boy was doing well, named most improved student at prizegiving, his joy at being with Mr Teacher is well documented throughout this blog. Yet within four months of Mr Teacher moving to another class, The Boy found himself permanently excluded. And five months on with no education whatsoever we are no closer to finding another provision that will take him. There's much that went on during those last four months that are the basis for the investigation, but there's one bit I wanted to share with you. I've chosen it because it's pretty indicative of the problems faced by far too many at the moment. One of the 'pioneering' strategies that was implemented to deal with The Boy was a spithood.
If you're unsure as to what a 'spithood' is, here's an article from the Daily Telegraph showing one in use:
You'll notice that when the police in Germany use a spithood, it makes newspaper headlines in THIS country, but when they get used in our own schools, on disabled children, from the age of eleven? No-one bats an eyelid. Have a look at the picture again. That's what so-called 'pioneering autism education' looks like in 2015.
I could go on. And in fact, before I run under my duvet, I will. I don't doubt that challenging behaviour is incredibly difficult to deal with - I don't have all the answers (which is one of the reasons why I haven't been so bold as to tattoo 'pioneering leader in parenting' across my forehead). But how can anyone think this is the right way to treat any child, let alone a child with special needs? It happens more and more - even the language of special needs education has changed over the years to justify the unjustifiable. The term 'restraint' has become 'positive handling'. Seclusion rooms are 'Chill-Out Zones'. It's bloody wrong. By using airy fairy terms, we start to make people think their use is justifiable, even beneficial to the individual, whereas if we returned to the bleaker language of 'restraint' and 'isolation units', maybe people would think twice before using them, and ensure they really are the last minute, absolute emergency intervention they were always intended to be. I'd love to tell you the spit-hood was a one-off, but so conditioned have things like this become I even have a 'Spit Hood Policy' adorning my coffee table, no doubt created to both justify its existence, and to satisfy Mr Ofsted that all is well with the world. As long as we document it, its use must be legitimate, right?
We talk about the impact of violent video games on the behaviour of our children and young people, but what if their time in education has continuously been spent being restrained, manhandled and physically held? What is the impact of that on their behaviour and outlook? Could the system, and the private industry it has created around itself, be instilling the very behaviours its very existence claims it can remove?
The duvet is calling. The naming and shaming of people isn't my style. The school know they've made errors - the very fact they offered me an advisory role in an attempt to buy my silence is testament to that. All I asked for was an apology from them for using the spithood, and their reassurance that they would never use such a device on another child again. They wouldn't do that. Sorry, nowadays it seems, truly is the hardest word. Instead I received a letter apologising for their 'procedural shortcomings'. My brilliant son, and their treatment of him, reduced to an administrative error. Bloody shame on them.
So that's why I've been quiet. It's felt wrong coming here to pretend everything is lovely in our world when it isn't. But we're getting there. It hasn't been easy having The Boy at home constantly, for either of us, not least him. He misses his friends (oh yes, dear system - friendships), and Dad isn't a great teacher. There are days where it feels like we're swimming in treacle. But we're getting there. And this time I know we won't drown. Maybe that's the positive. We've been here before, and I know without doubt we'll reach the other side. And perhaps we'll even both be stronger as a result. But any progress will be despite the system that exists to support him, not because of it, and that's the saddest part of all.
If you want to help change the way people with learning disabilities are treated in this country, you could do a whole lot worse than pledge your support for the LB Bill. It's brought to you by the brilliant people behind the Justice for LB campaign.
It’s been a lot longer than I intended, I’m sorry. I guess time is hard to come by at the moment, sometimes life just gets in the way… Although there’s no news on the school front as yet, things are moving forward “in a positive manner”, that’s about the most diplomatic thing I can say for the time being. I’m not being intentionally mysterious, honestly, and I’m so grateful for all the emails and messages of support we’ve received, it sounds flippant but they really do mean a great deal, and rest assured as soon as I can say more about the subject I will. In fact, there’s a very real danger that once I start I won’t stop…
For now though, there are FAR more pressing matters to deal with. A crisis befell the Williams' household on Tuesday this week...
Let me paint the scene. It was early morning. We were both chilling in our pyjamas… Dad’s School wasn’t scheduled to break up for the Easter holidays until the next day, but at the last minute Dad decided that the staff team had worked bloody hard this term, and so being the enigmatic school leader that he is he decided to treat them to a cheeky little INSET Day. What a guy. The Boy was happy, it meant that if he kept under the radar Dad might even let the teeth brushing slide for a day. Life was good.
We were sitting in the lounge, having a discussion about whether the Power Rangers is a documentary or not (to be fair, it was me trying to convince The Boy it was), when he spotted something out of the corner of his eye. “What’s that on Skye?”, he asked, pointing at one of the guinea pigs.
She had “a patch” on her side where the fur was missing. “What is it?”, The Boy asked a second time, the emotion and anxiety rising in his voice. “It’s nothing”, I replied calmly, forever the voice of reason. And inside I was screaming “TUMOUR!!!! The guinea pig has a tumour!!! On an INSET day!!!! This will all end badly and we now have to sit here watching her slowly die a long, painful, wretched death!!!”.
“Don’t worry mate, it’s fine”, I smiled, “I'm sure it's nothing, but we'll take her to the vet, just to make sure… I’ll make an appointment”. We’d never been to the vet before. The demise of the hamster had been far too quick for medical intervention. I did a Google search, found one, and made the phone call. I couldn’t voice my fears on the phone since The Boy was now listening in, his anxiety levels rising, that so-called lack of empathy that so many experts like to spout on and on about is mysteriously nowhere to be seen when you need it. Despite the gravitas of the situation it wasn’t appreciated by everyone, I’m sure I heard the receptionist snigger over the telephone when I described the guinea pig’s symptoms as “a patch”, but I ignored her. This was serious.
We made poor Skye a portable home out of an old shoe box, filled it with hay and kale (oh, we’re never without a spare bit of kale knocking around in this household), said goodbye to a lonely left-at-home Fluffy and made our way to the emergency room. And for the whole drive all I’m thinking is please-please-don’t-put-this-poor-bloody-guinea-pig-to-sleep-in-front-of-The-Boy. On arrival, I’m slightly disappointed that we aren’t rushed straight through to Resuscitation, but instead we’re handed a clipboard to fill in our details.
“No”, The Boy shouts indignantly, “It’s S-K-Y”. (See how Dad’s School is always educational, even on an INSET Day?) All this time I’d spelt it wrong…
Colour? Black and white
Date of birth? -
I almost felt ashamed for not knowing her exact date of birth, but I took a chance that it might not be a deal breaker. I handed the clipboard back together with Sky’s address, email and phone number, and we took a seat. After a few minutes, a door opened, and a nurse appeared.
“Sky Williams”, she called out.
Me and The Boy looked at one another. Neither of us moved. She’s talking to the bloody guinea pig.
“Sky Williams”, she repeated. Without saying anything we nodded, and the three of us filed into the consulting room behind her...
The vet was very friendly. And Sky was ever so brave. She was weighed. Perfect. Then out came the stethoscope to check her vital signs. Her heart and lungs were in fine condition. I began to relax a bit. The whole time The Boy didn’t look at any of us, his eyes were transfixed on a door at the far-side of the room. The vet continued, she checked her eyes. Clear. Ears. Clear. Then, after seemingly forever, she looked at “the patch”.
There was a pause. Maybe not quite as long as I’m trying to make it now for dramatic effect, but it was definitely a pause. “It looks like an abrasion”, she said, “she must have caught it on something. I’ll give you some cream.” Then I think she felt a bit guilty, “her nails are quite long, I’ll give them a trim”….
That was that. An abrasion. A graze. I’d wasted an INSET Day and brought a bloody guinea pig to the vets with a graze. The Boy couldn’t even share in the relief of all this because he was still transfixed on the door at the end of the room. Eventually, he spoke.
“Is that where the dead animals go?”, he blurted out.
We said our goodbyes and left to go and pay. Fifty four pound. Fifty four painful, hard-earned pounds. £32 for the trauma appointment, £22 for the cream. So there you go. And now The Boy has gone to his mums for the Easter weekend, and I am spending mine applying £22 cream twice a day to a guinea pig graze. I told you I was busy.
Happy Easter to you all. I won’t leave it as long next time, promise. Oh, and if the Easter Bunny has a little fall on Sunday morning and catches his knee while delivering your goodies, I’d just leave him lying on the ground if I were you…
If I sneak this in today I can claim to have written a blog for January, get me!
I’m sorry things have been quiet the last few months. The book deadline certainly hasn’t helped, but there has been other things going on as well. Since September, school has become the same old problem it has been for The Boy all his life. The same, regular pattern that we seem to go through every two years started – meetings to express concern, part time hours, exclusions, more meetings and so on. And as always I’m stuck with how much to share about it here.
So, for now, The Boy is out of education again. The fourth school that “can’t meet his needs”. There’s so much I want to say and scream about, but for the time being I feel it would be unwise to speak out while I’m raising concerns with those involved and the relevant authorities. Rest assured, when the time comes I’ll shout things loud and clear and will keep on shouting until somebody, somewhere finally sits up and starts to listen.
I’ll just say this (can't help myself...). For all those involved in providing care and services for some of the more vulnerable members of our society, in particular those within the private sector, you need to take a long, hard look at yourselves. There are methods of restraint and containment used within schools and care homes that even some police forces in this country have deemed inappropriate. And that is just wrong. And just because you write a policy to justify their existence, that doesn’t make it right either. If the general public knew about one half that goes on, there would be bloody uproar. Instead all we have is Mr “here’s 48 hours notice for you to hide things and pretend everything is rosy” Ofsted. I know I may come across as just a pain the backside parent who doesn’t accept how difficult his child can be. But I strongly believe that so many of the policies, procedures and strategies used to deal with “challenging behaviour” only serve to contribute to the problem rather than solve them. It's time to look at things differently, and I know this might seem a bit radical, but maybe just once to try and see things through the eyes of the most important people in all this, those within your 'care'.
Mini-rant over. I’m sorry I can’t say anymore at the moment, but bloodyhell that feels better! The Boy is doing okay, if not a little bewildered and saddened by it all. The irony is that for him exclusions have become as much a part of school as the uniform, he's well used to the process by now. I think that's what I find hardest of all - we're not dealing with someone who refuses to go to school or challenges authority because he hates being there. Far from it, The Boy is someone who loves school, otherwise I would have given up the fight long ago...
Anyway, for now the situation is what it is. We continue to look for a new school, but each time the options get narrower and narrower. We'll get there I'm sure, as will the hundreds, if not thousands of families up and down the country who find themselves in the same boat - I wish our story was a one-off, but as I know from all those who contact me we're far, far from it. But I suppose if there's one thing this process has taught me, it's that if I'm going to shout and scream when things go wrong, then I need to ensure I also speak up when things go right. It's a crap system, but within that system there are still a great many individuals who manage to shine. So to finish, here’s an open letter to Mr Teacher who has featured in this blog so often:
Dear Mr Teacher,
I just wanted to say thank you for everything you did for The Boy while he was in your class. You know how much you were missed from June onwards. It was only a couple of months ago that I discovered you were a newly qualified teacher, and that surprised me (not because you look old beyond your years, you’ll understand…). It’s just you had a natural way with all the students I saw you teach, in particular The Boy. You understood him more than anyone.
Sometimes in teaching, like in life, it’s the little things that make all the difference. Like in one of the emergency meetings held recently and as The Boy left he started picking his nose. Everyone present was oblivious, but you stopped him immediately. You took him aside, and said you knew that when he picked his nose it meant he was nervous or upset, and you asked him what was scaring him. You just knew, instinctively, how to talk to him. You’re the first person outside the family who ever took the time to understand and see him the same way we do, and for that I will be eternally grateful. It was my guilty pleasure, watching the way you interacted with him.
On the last day of school I was called to collect The Boy and he’d decided that lying under the school minibus was the perfect place to escape the world for a moment. He was refusing to come out, but you knew that the best way to get him out wasn’t to drag him, it wasn’t to chastise him… You ‘laughed’ him out of there. You made him feel safe and happy until he just forgot why he went under the minibus in the first place.
Thank you. Your science lab was the messiest, most fun classroom ever. I'm sure you're not bad at teaching the subject either, but apparently what singled you out as the best teacher ever was that you used to bring chocolate muffins in on a Friday.
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
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.