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..."
This one isn’t so much a blog post really, it’s more an announcement following some comments from a few sharp-eyed readers on the previous post!
It's time to come clean... there’s another reason why things have been quieter on the blog front over recent months, and why there aren’t as many shows coming up… Just before the summer I started discussions with a publisher about writing a book.
After a couple of months of sleepless nights trying to decide if it was the right decision and how to go about it, I’m pleased to tell you that it’s happening. I’m going to be an author, mum! And without giving too much away, your grandson is too!
So, some sharp-eyed readers spotted the book in the pre-sale section of Waterstones and Amazon– I genuinely didn’t know it was there and it terrified the life out of me, not least because I haven’t even finished it yet… All I can tell you at the moment is that it will be called ‘My Son’s Not Rainman’, it will be the story of our life. I’ve signed a deal with a publisher, I have a deadline, and I’m trying to be grown up and not do all my homework on the evening before I have to hand it in.
This bit is going to sound flippant and I really don’t want it to. None of this would have happened without each and every one of you reading the blog. Publishing deals are notoriously difficult to come by at the moment, I know that, and without having so many people following our story, the book wouldn’t be happening. I’ve mentioned before the struggle I’ve had in terms of sharing our story and infringing on The Boy’s privacy, but I maintain that our lives are infinitely better as a result of doing so. We have both made friendships through this blog, and The Boy has been met with more compassion and understanding than he’s been shown at any point in his life. Every message, comment, facebook like – it’s just another reminder of what an incredible boy I have, and what a lucky father I am.
So, some of you may well be asking what happens with the blog? Will it be disappearing behind a paywall at some point in the future? No, it won’t. This blog will remain free to access for as long as people keep coming here to read it and for as long as The Boy is comfortable with that. I’m happy to keep writing, however it does feel the time to stop is probably next year when he turns thirteen. He’s a teenager then, it’s no longer my story to tell, it’s his. Maybe in the future he’ll come back and tell his own story (he won’t!), but that will be his choice.
I normally just write the blog at home, but I decided that now I’m going to be a proper author and all that I’ve got to step it up a gear. So, I’ve come away on my own to write for a couple of days. I had a vision of Agatha Christie sitting in a small bar of a secluded inn on a deserted sea front, the log fire her only companion with a hot toddy on the table next to her writing pad, endless thoughts and ideas effortlessly spilling out onto the page…
And so I find myself in a Wetherspoons in Norfolk on a Sunday morning with the rest of life’s winners, on my fourth pen from the pack of fifteen from Poundland with the lights of the fruit machine dancing across the sticky table. It is 9.52am and I have been asked if I smoke four times, three of them by the same man. But the big question is this… Did Agatha go for the plain burger to go with her pint of Fosters, or did she spend an extra £1.29 for the cheese and bacon? Some things we’ll never know…
In some respects The Boy is struggling to find his way in the world once more. Or maybe it’s the other way round, and the world is struggling to find a way to The Boy… he’s spent so long trying to conform, that sometimes I wish it was the rest of the world that would bend a little more and at least meet him halfway.
It struck me that in the middle of this storm, there are emails, letters, referrals and reports being written about him on an almost daily basis. Yet the more that is written, the further away from the real him they seem to become. Certainly they will list the behaviours, the concerns, the proposed strategies and so on, but they won’t even begin to come close to describing him. The real him. Perhaps it’s another reminder why I wanted to share our story. Because if I don’t write about the real boy, then sometimes it feels like his childhood will be lost forever, evaporating into the ether or even worse it will become buried deep under mountains of paperwork detailing behaviours and misdemeanours.
So to that end I wanted to share two short stories that happened recently. They’re not particularly groundbreaking, but they mean a lot to me. Because these two stories encapsulate him. My son. They come closer to describing the very essence of him than any report ever can.
Story one goes a little bit like this…
The Boy doesn’t like seeing homeless people. It upsets him. He isn’t offended by them, far from it, it’s more that he just struggles to get his head around the notion that some people have nowhere to call ‘home’.
So, a few weeks ago we wandered into Tesco. And there in the entrance was a local foodbank. They were collecting donations, and had printed on a piece of paper the items they were looking for. I told The Boy they helped to give food to those people who didn’t have enough money. He asked if that included the homeless. I said yes, it probably did. So we took a printed list, and I told The Boy that he was in charge and he could pick two things from the list to donate. The list was filled with household essentials - shampoo, tinned meat, pasta, baked beans. Boring things apparently. The Boy refused to pick any of it. We’d finished our shopping at this point, and still he’d selected nothing for the foodbank. I asked him if he wanted to get something that wasn’t on the list instead. He nodded. “What do you want to buy?”, I asked. “I want to get hot chocolate and biscuits so they can have them at bedtime”.
Story two is a bit shorter…
The Boy came home the other day and said that he felt sad as there was a teacher at school whose grandmother had died. “That’s sad”, I said, “what did you do?”
“I gave him a hug”, The Boy told me. “And I said to him, ‘I’m sorry for your loss’. Because that’s what you say when someone dies. I saw it on Tracy Beaker.”
Keep being brilliant, son. Shine bright. The world will catch up eventually.
Deep breath… we’re back!
Our trip to the Dr Who Experience was as wonderful as predicted. I know it seems strange to some, a 300 mile round trip for less than 24 hours away, but for us it was perfect in every way. As parents we can often be accused of ‘feeding’ special interests and obsessions, and I know that we should try and widen the horizons of our young people as much as possible, but sometimes… sometimes with The Boy it feels that getting lost in time and space with the Doctor together is the only surefire way we have to really find each other.
If you could have seen his face when we arrived at the Diner and sat in the booth next to the exact same seat where Matt Smith had actually sat for real life. Or when we drove out in the pouring rain and found Sarah-Jane Smith’s house with the very post box that Mickey stood next to. Or when he discovered you could have as much bacon as you wanted for breakfast in the hotel. I can’t quite put it into words, but during those fifteen hours in Cardiff, I felt like I got closer to the real essence of him than fifteen weeks at home.
We travelled up North later in the holidays to spend time with the cousins. They were all there at one point or another, the whole tribe, terrifying me with gruff voices and hairy chins. And that was just my niece (that has to be the worst joke I’ve ever written in this blog but I’ve been away for a couple of months, I’m a bit rusty, so forgive me). The Boy was in his element. I’m always struck by how much his cousins don’t just accept him but embrace him in every way. The genuine delight on their faces to see him is something that makes every trip worthwhile.
There’s one cousin in particular who The Boy shares a special bond with. TheCousinWhoLovesBeingGinger. I suppose they were destined to be friends, their dads are twin brothers, and there’s only six weeks in age between the boys. He might be younger and a little bit smaller, but TheCousinWhoLovesBeingGinger will forever be the person The Boy looks up to.
It’s difficult to describe the bond they have. When we’re there they spend every waking moment in each other’s company. The Boy forever doubled up with laughter, his cousin often bemused at what the joke is but loving the attention nevertheless. They share a bed, brush teeth, go into shops on their own… all the things The Boy hates doing become possible when his ally is at his side. It’s effortless, their relationship. There’s no need to travel hundreds of miles searching out police boxes and daleks. Whatever they have, it just exists. It’s my favourite thing.
As we left for home, TheCousinWhoLovesBeingGinger flung his arms around The Boy to say goodbye. “Love ya, mate”, he said, with all the casualness of someone ordering a cheeseburger and chips. And then he turned to run up the road, so he could be the last to wave goodbye to our car as we turned the corner for home.
As we drove away and that brilliant shock of hair slowly diminished in the rear view mirror, something occurred to me. TheCousinWhoLovesBeingGinger didn’t wait for the reassurance to hear those words repeated back like the rest of us so often do.
Maybe at the times when it really matters, you don’t have to. You just know.
I'm sorry, it really has been a while... This is another one of those 'brief updates' blogs.
It's been a strange few weeks, not least for The Boy. Without going into too much detail, it's been an unsettling time for him, particularly at school. I think it's been a combination of the hot weather, the inevitable changes the end of the school year brings and having a stupid dad who took on too much work and was away more than he should have been. I apologise that means things have been quiet - as always I find the balance between sharing our story and including some of the more challenging aspects a tricky one.
So, this is just to say we're ok. I'm way behind replying to emails, I'm really sorry, I will get to them in the next couple of weeks. In the meantime we're spending our summer trying to avoid going out, sitting in front of a fan while re-watching Primeval episodes on Netflix.
However, it seems not every outing is a painful one. There's much excitement this morning, we're off on our holidays. To Cardiff. For one night. The Doctor Who Experience is calling. The trip has been planned to every last detail - dinner tonight in Eddie's Diner where The Impossible Astronaut episode was filmed. Then bowling at the Red Dragon Centre (fingers crossed for lane 7, where Gwen bowled in Day One). Then after the exhibition we're off to have our photo taken outside the house where Sarah Jane Smith lived before heading home. It's all in hand.
And the highlight about going on holiday to good old Wales? According to the forecast, it's a bit colder and it's raining.
The Boy had a medical crisis this week beyond anything we've experienced before, and apparently I failed to treat it with the gravitas and round-the-clock care such a severe situation demanded.
He had a splinter.
I was first alerted to the medical drama when Mr Teacher sent me the following email:
"The Boy got a splinter in his finger whilst playing 'it' today from the cladding on one of the buildings. He didn't want me to try and get it out and he said amputation was completely out of the question. I have cleaned it with an antiseptic wipe and have put a plaster on it."
I've written before about pain, and what a strange concept it is. I know The Boy experiences pain daily from his cerebral palsy, I see it on his face as he gets tired, as he struggles to pull himself up the stairs. This pain, 'big' pain, he rarely complains about, in many ways it's upsetting that it's just become a part of his everyday life. But 'little' pain - pain that you can see, like cuts and splinters, will cause a reaction similar to someone who's been seventeen hours on the operating table with no anaesthetic.
By the time he arrived home from school that day his condition appeared stable, until he caught sight of me and then it went straight to critical. He got off the minibus, with Mrs T carrying the patient's bag behind him. The finger was held aloft in the prone position for everyone to see the injury, like ET getting ready to phone home.
Knowing full well what the reaction would be if I tried to remove the splinter, I took the old plaster off and put some magnesium paste on his finger to draw the splinter out (well, I used Vicks vapour rub and then bought magnesium paste the next day - what a marvellous thing google is). Once the plaster was back on the pain became better as he couldn't see it. But it also reinforced the idea that he had an injury.
Then the patient decided to make the best of a bad situation.
He couldn't get himself a drink, as he had a plaster. He couldn't have a bath, as he had a plaster. He couldn't get undressed/dressed as he had a plaster. He couldn't speak on the telephone to say thank you to someone for the late birthday present he'd been bought as he had a plaster. He could however use an iPad and type on a keyboard.
The present he'd been given was a watch to help him tell the time. The next morning I put it on his wrist to show him how to wear it.
"Do you like it?", I said.
"Yeh!", he replied.
"You can wear it to school today"
"I can't because that side's too heavy as I've already got a plaster..."
Although the pain subsided, it was six days of this before the splinter eventually worked its way out. And I can't help thinking The Boy was slightly disappointed when it did. Being a patient is much more fun than having to do things yourself.
It would appear it wasn't only at home where he made the best of the situation. My favourite comment of the week was from Mr Teacher on day three in the home school diary: "The Boy did very good work in Science today despite having only nine fingers...".
It has been a while, I do apologise. I'd like to tell you it's because we've been basejumping in Peru, but given I've just had to google the word 'basejumping' to double check it's actually a thing, I think you can safely assume that didn't happen. We have of course largely been spending our time indoors avoiding fresh air and the sun.
Sometimes I write blogs and fail to provide updates as to how things are, so here's a quick rundown:
On the whole, life is good. It could just be an age thing, I don't have any other children to make the comparison to, but these last few months I feel like I'm just beginning to know The Boy. Truly know him, as a person, rather than just 'my child'. Finally, after all these years, I feel like I understand him. As he learns to articulate himself more and more, so many of his outbursts that happen "for no reason" make perfect sense. Sometimes I wish I could jump in the tardis and head back ten years, maybe then I might have been able to understand that young, frightened toddler so much more. And maybe I could have helped him more too.
But, we can't dwell in the past. All we have is the here and now, and the here and now is largely an alright place. Here's an example of just how far he's come. The other day we were visiting a friend and her brilliant son, TheBoyWhoLovesLego. After lunch, we decided we'd go out for some of that dreaded fresh air I mentioned earlier. We committed a cardinal sin - a last minute decision, no warning in advance. TheBoyWhoLovesLego made it quite clear that he really didn't want to go... The Boy said nothing. I asked him to get his things together, and prepared myself for the onslaught. He just left to go into the other room. After a while, I decided to see where he'd got to. I found him sitting on a chair, tapping his forehead with his hand.
"What are you doing", I asked.
"I don't want to go either", he smiled, "so I'm trying to put the excitement into my head".
I'll warn you in advance this isn't the wittiest blog I've ever written but it might just be the most important one. It's also the first blog I've written that isn't about my son, but about someone elses.
Connor Sparrowhawk was eighteen years of age. And the great tragedy in this story is right there in the use of the past tense. Connor, or Laughing Boy (LB) as he was known, drowned in an unsupervised bath in an NHS Treatment and Assessment Centre in 2013. Connor had autism and epilepsy. That's right, in the year 2013 a young man with epilepsy had a bath unsupervised and drowned in a "care" facility. So completely wrong and indefensible that it's hard to comprehend.
Earlier this year an independent report found that Connor's death was preventable, and that there were significant failings in his care and treatment. Two months after Connor's death, a separate Care Quality Commission found the unit to be inadequate in all 10 measures of assessment. I could go on, but you get the picture... A brilliant young life was taken so unnecessarily.
I suppose the greatest tragedy in all this is that the lack of care and compassion shown to Connor isn't unique. You only have to read Mark Neary's brilliant blog to discover the treatment his son Stephen endured in a similar unit. There's the story of Josh Willis being treated 500 miles away from his family, or Claire Dyer who professionals want to move 4 hours away from her home. Tragically, the list goes on.
Connor was in the unit for 107 days before he died. And so earlier this year a campaign called #107days was formed. In the words of the campaign: "we want to harness the energy, support and outrage that has emerged in response to LB’s death and ensure that lasting changes and improvements are made."
Numerous people and organisations have adopted a different day of the campaign, and today I've adopted Day 57. Tonight I'm performing a show at the Kenton Theatre in Henley that is dedicated to Connor. I'll share his story, the video below will be played and when his brilliant face fills the big screen the audience will be in no doubt as to why he was called Laughing Boy. I'll donate my fee for the night and sell his postcards in the interval and generally pester and badger people like a great big pain in the arse to get involved and ensure they shout Connor's name across the rooftops as they leave into the night.
Connor Sparrowhawk - LB 'Laughing Boy'
I'd love for readers of this blog to get involved too. I'll add the ways to support the campaign on social media below. And there's also the postcards I mentioned earlier. But above all else, if you can only manage one thing please let's keep talking of Connor Sparrowhawk for a long, long time to come. Make a point of telling someone Connor's story today. Set up reminders on your telephones 1, 5, 10, 20 years from now to keep his memory alive. Let's ensure his legacy is to lead to lasting change for the young people and adults that follow. Let's keep saying his name.
I used to love school trips. In 1983, I went on a school trip to that London. It felt like the trip of a lifetime, we were going to the National Theatre and I was finally going to see our capital city in all its glory.
Today The Boy is off on a school trip of his own. At the age of twelve, it's his very first trip alone. No risk assessments concluding that he's too dangerous to be allowed outside without a three to one staffing ratio, no compulsory parent escort. Today, he's been selected to go on an Art trip.
Selected. That's my favourite bit. He's not going just because everyone else is going so we'd better drag him along too. He's not going so someone can tick an 'inclusive' box. It's like the kid at school who always gets picked last when choosing sides for football finally gets a taste of just what it feels like to be picked first.
He's very excited. I asked him what he's going to do on the trip.
"Stuff", he replied, his new word of choice to describe everything he does. He just does "stuff". How was school? "Fine". What did you do? "Stuff". It's even accompanied with the obligatory shrug of the shoulders to suggest that the whole world is one big fun palace and the only thing standing between him and unlimited joy is the inconvenience of having to talk to me.
I like it. I like every weary glance he gives me nowadays. Every look of disdain when I have the audacity to try and make him laugh. I suppose it's in those moments that I see myself in him. They're the moments where it feels the world he inhabits away from me continues to grow. They serve as a reminder for me that I can't control every aspect of his life, and neither should I want to. And most of all, they serve as a reminder that when you're going to be thirteen on your next birthday there are lots of things you don't want your mum or dad to know about.
So there you go son, have a brilliant trip today. Behave yourself. Oh, and can I tell you something? It's a secret though, you've got to promise me you won't tell? Cross your heart? See that trip to London I went on in 1983 and told everyone I had a brilliant time? I was twelve years old. We had to turn round at Milton Keynes. Me and another lad got caught by the PE teacher flicking the Vs out of the back window of the minibus on the M1. Don't tell my mum will you? I was gutted. I didn't even get to do any stuff.
As parents of children with additional needs we're often accused of not letting our children grow up, of doing too much for them, keeping them forever young. I get that, and I'm certainly guilty of it. Maybe it's because The Boy isn't doing the things that other twelve year olds do that I forget sometimes how old he is. He isn't going out knocking on friends' doors to play or nipping to the shop to grab a pint of milk... apart from Doctor Who he's never sat through anything on TV broadcast after 7pm.
So many of the things I do without even realising. Habits formed over the years - so used to fetching drinks or helping put on shoes that it's become second nature, and it's only now writing it down I even realised I was still doing much of it. For a quarter of my lifetime I've been helping dress The Boy in the mornings - it's as much a part of my routine as brushing my teeth.
I know I'm not doing him any favours by helping too much. In terms of dressing, I've never really known how much he can't physically do because of his cerebral palsy, or how much he can't do because there's-no-need-as-someone-else-will-do-it-for-you. But if he's to have a stab at independent living when he's older then I need to start putting that in place now. It's something I should have done years ago, but his clothes are all labelled now in drawers for him to dress himself. I've agreed to still help with socks. There's a cupboard in the kitchen that has been emptied and labelled so it is now his cupboard, it contains drinks, cups, snacks and stuff for breakfast.
All this has come about because the other morning I asked him for a cuddle when he woke up, and I finally realised just how old he is. He used to always come in my bed in the mornings, and it's something that had stopped without me even realising... Don't get me wrong, his cuddles were never a delicate affair, they always involved just launching your whole bodyweight on the person, but that morning as he lumbered across the bedroom and then threw himself at me, it felt like I'd invited a plasterer called Keith to come and share my bed with me. Then when I couldn't find a matching pair of socks and I realised I could just borrow a pair of his as they're the same size, it was the final straw.
So this is it, day one of the new Independent Living manifesto. So far, The Boy has been up for three hours. I asked him when he was getting dressed, he has stated that he's leaving his onesie on all day. Twice he has asked for a drink, when I reminded him where his cupboard is, he has declared he isn't thirsty. The hunger strike is in full swing. I daren't even ask him when he's going to start on the plastering...
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.