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.
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.