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…
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.