Love this from Harriet Cannon at the University of Leeds. Great list of superpowers!
So, I haven’t written a blog for a while. I wrote one a few weeks ago but it was really dull and I wouldn’t have wasted your time with it, to be honest.
As part of the autism awareness stuff, I re-read a great TED piece about the temptation to concentrate on all the things that autistic kids and adults *can’t* do, and letting that cloud the view of all the amazing things that they can – and have done since time began.
Over the past few years, we’ve filled in lots of forms that list all of Jake’s areas of concern – all the things that cause him difficulty. To be fair, there is normally a little section where you can list the sorts of things that he likes doing too.
So, Jake doesn’t speak too much at school, he won’t use the loo, and he needs to get better at asking for things when he works with his teaching assistants. He also needs to practise ‘kind hands’ when another child gets in his space (as opposed to ‘shovy-pushy potential lawsuit hands’).
But, when we come to all those other things that he *can* do – basically, his superpowers – it’s a long and beautiful list.
Top of the list of superpowers is that he’s the most genuine and authentic person I know. He doesn’t tell lies and he automatically sees the best in people. His autism means that he can’t understand why anyone would say things that they don’t mean, or why anything wouldn’t be exactly as it appears. He accepts everything and everyone.
His sheer joy at things he loves is insurmountable and is like being caught in a sunbeam when he’s smiling his head off while racing around the place or bouncing on his bed or watching something obviously hilarious on his iPad.
His memory would make an elephant jealous. He can remember and recite long scenes from his perennial favourites ‘Toy Story’ and ‘The Gruffalo’. The withering look he gives me when I’m not word perfect with my Oscar-worthy portrayal of the Mouse in the latter is pretty chilling.
When Jake is focused on something, it’ll take a huge concerted effort to distract him. He can concentrate on a game of lining up five little monkeys, five little dinosaurs, five little Paw Patrol rubbers – basically, five of anything – and be fixed on it for ages. This would bode well for concentrating in school but there are too many distractions I guess. On his own terms, and with a bit of quietness, he can attach himself to the job in hand like a limpet. The fun starts when the limpetness (real word) coincides with our frantic efforts to get him ready to leave the house or go to bed…
Finally, he is creative and imaginative, prone to amazing flights of fancy when the mood takes him (and as a good way of switching off from the confusing, upside-down world around him). As I write, he is charging from one sofa to the other, laughing his head off whilst holding a plastic chicken leg aloft like a sword. Who knows what’s going on, but it’s obviously the best game EVER.
All things considered, as I head into my dotage and embrace the mantle of angry old man, I would be a much better person if I jacked in some of my ‘neurotypical’ attributes and concentrated on developing more of Jake’s – his love for life, his joyfulness and his open acceptance for everyone he meets. These are the things that he can do, and the things that he does well.
And so, into November…
I was away all last week, organising a big conference in Belfast. Before I set up my own business three and a half years ago, I got quite a bit of overseas travel in; these days, I still enjoy it when the opportunity arises, but I get very homesick and miss the family. So it was a beautiful thing to meet Jake from school on Friday, pick him up for a hug and see the big smile on his face while he studiously looked somewhere to the right of my face as if I wasn’t really there, and gently stroked my cheek. He’s been reassuring Sally all week that ‘Daddy will be home soon. He’s on a aeroplane’.
Secondary school is occupying our thoughts at present. Still a while to go obviously, but we are wondering whether mainstream is the best option for Jake. His primary school is fantastic and the staff, especially his teacher and two teaching assistants, work hard with him. We’re still years off secondary school but, if we’re starting to think of alternative choices like autism units or even home schooling, then we might need to start shifting things around. We are both fortunate to work for ourselves and from home – how we’d manage without both of us being around when we need to be, I don’t know.
There’s no doubt that anywhere outside of our house is a nervous place for Jake. At school, he behaves OK but he does push other kids if they get into his space. The kids themselves are lovely with him. Patient, friendly and understanding. Not sure if teenage kids are going to be so accommodating. You have to ask why would we put Jake through a situation that will make him feel anxious and potentially isolated? The alternatives are potentially huge. If we home school him, he’ll be fine with Sally but I only know about bad 80s television and the hits of T’Pau.
That’s if he makes it to secondary school. I was making dinner yesterday and thought Jake had been quiet in the next room (we now have hearing like bats, highly developed over five-and-a-half years, to anticipate impending disaster). Sure enough, he’d taken a bottle of water and poured it all over the TV, DVD player and assorted cables. I’m still waiting for everything to explode.
I told him off for being naughty. He cried (mostly because I turned off Boss Baby on its third showing that day before he disappeared in a ball of flame), then tried to hit me, and then – with a dramatic Callas-like throwing of hands up into the air – shouted ‘Daddy, I’m so sorry!’. It was in an American accent so was probably plucked from the TV, but he meant it.
Going back to the schooling question, the ‘A’ Word is back on TV and we both cried through most of last week’s episode. The boy’s parents decided to move him into a specialist school, having been called into school to talk him down from the roof outside (OFSTED would have a field day). It’s very close to where we are at, and really excellent.
A few weeks ago, I woke in the night thinking I was having a heart attack. I felt a great weight on my chest, like I couldn’t move and woke up with a start. As I clutched my chest and sorted out where I was, I realized that Jake had been creeping around in the night, carried a (very dusty) pair of dumbbells from under our bed, and placed them gently on my sleeping form. Sal woke up a few nights later with a pair of shoes on her head. Keeps us on our toes…
After a lovely summer break when Jake has been relaxed at home, it’s been back to school and into Year One for the boy.
It’s always a bit worrisome that he’ll have got so used to home for weeks that he’ll have a meltdown, but he’s been brilliant.
He’s a boy of many surprises. A few weeks ago, he took it upon himself to pick up a pen and sketch a quick self-portrait. This is the boy who, when given a pen up to a few weeks ago, would hold it like a wet fish in his hands and refuse to even look at the piece of paper.
Now he’s a budding Picasso.
Definitely his best side.
(I felt like I might explode with paternal pride).
We were flying around the country during the holidays, trying to break up the long weeks with some weekend trips. Jake has coped very well. Only a few hairy moments – screaming when we got out of a hotel lift on the wrong floor and he couldn’t understand why that door there wasn’t our room when everything looked exactly the same!
Only one restaurant where he held his hands over his ears a lot because it was busy, loud and overwhelming. Can’t blame him – I felt the same.
Pretty much only one pre-school meltdown the night before he went back too 👍🏻
Like all the kids in his class, he’s shot up over the holidays. He’s not a small kid anymore and so it’s more obvious to other folk that when he’s busy shouting out EVERY verse of ‘Five Little Monkeys’ in public (amazing how you can grow to hate a song quite so much. Feck off monkeys), or running around laughing to himself, that he’s not just an overgrown toddler doing toddler things. Now you can see that people look at him.
I used to really worry what people thought about me. Like, all the time. Ten years ago, if I was aware that Jake was attracting stares, I’d have become a red, sweating and mumbling wreck.
In my liberating forties however, I don’t care quite so much (I know, my personal journey is radically impressive).
Jake is so wonderful and happy that I absolutely love the fact that he enjoys himself by laughing like a drain, screaming ‘Gunther!’ in my face, then bolting off like a dynamo, giggling like a maniac.
To be honest, everyone who does give him a bit of a stare is lovely. We get a smile or a ‘ooh, you’ve got a lot on your plate’ acknowledgement. Better that than settling into the background of Life.
Ice cream at Bolton Abbey with his sister Beth and seemingly a jacket potato with sunglasses
So, I wouldn’t say it’s been a relaxing break but it did go really well. We made it through unscathed.
This picture though is of Jake’s first ever attempt to write his own name. For us and for his teachers, it’s huge.
Jake has an Education, Health and Care Plan (EHCP – the old ‘statement’ at school). A key aim for him this year was to start making marks on paper. This could be with anything – pencils, crayons, other children…
Since September, he’ll reluctantly rest his hand on ours whilst we write out his name on the card next to his photo. He’ll sound out the individual letters but will normally look ANYWHERE apart from at what’s being written.
Yes indeed. Today, Jake wrote his name all by himself (with his lovely teaching assistant Mrs Pickard next to him). Four little letters but one of the biggest milestone achievements in his little five years.
Of course, he hasn’t wanted to do it again since but small steps… 😊
And, in a day of brilliant news, Jake’s 13yo sister Beth has started to raise funding for her group at school to build a prototype of an app to help autistic kids. They’re at £375 of their £1K target already. Amazing. Have a look – https://www.gofundme.com/utime
And, last but definitely not least, our eldest, Martha, has been revising animal and plant cellular structures for her exams next week. She has stared into the dark abyss of GCSE Biology and shown no fear. No mean feat.
I’m a very lucky dad.
Jake’s speech is an amazingly colourful, rollercoaster mixture of repeated words, whole scenes from TV programmes and films, and the odd tantalising moments of real-time lucidity.
He can roll out great chunks of Peppa Pig episodes. Word perfect.
Sometimes, it’ll be months later when you hear a phrase in a kids’ TV programme and you’ll shout ‘So that’s where Jake got that from!’.
Often, the repeated scenes are accompanied by some hand-flapping and charging up and down the room. The hand-flapping is a bit of a fascination. Sometimes, it’s like his hands are the mouths of other characters in the scene. Sometimes, it’s like he’s just enjoying the light flickering in between his fingers.
His lovely teaching assistant is still dining off the day that Jake greeted her with a cheery ‘Hey, dirty lady!’. It’s only our closest, most resilient friends who don’t take the odd ‘Argh! Get away, scary monster!’ too much to heart. Or want to step cautiously away when Jake screams ‘Mum, it’s time to start the initiation!’.
When Jake is busy recreating a scene, it can take a while for him to notice you. Persistence can eventually get his attention, but wouldn’t, for example, stop him in his tracks if he was wandering somewhere that he shouldn’t.
A typical exchange this morning:
Me: Jake, what would you like for breakfast?
Jake: Five little alphabets jumping on the bed.
Me (dropping down to his eye level): Jake, what would you like for breakfast?
Jake: Well done, Pedro! You found them!
Me: Jake? Rice crispies or shreddies?
Jake: I’m a bit scared
Me: It’s OK. Would you like rice crispies or shreddies?
Jake: DON’T WORRY, PEPPA!!!
Me (holding up cereal boxes): Jake? Rice crispies? Shreddies?
Jake: Oh Daddy Pig, the wall has a giant hole in it! Erm, shreddies. Thanks Dad.
Jake loves words and he loves the way that they sound. It’s like he’s playing and replaying them out loud to test what they sound like, and to almost see how the letters flow and meld together. One of his favourite possessions is an alphabet of those colourful magnetic letters that you see stuck on fridges. He carries them around in a really cheap tin treasure chest that once held chocolate and looks as if it may now contain a loved one’s ashes.
Only upper case letters of course. Nothing funny.
He will happily spend ages laying out the letters in alphabetical order on the carpet, sometimes rubbing the plastic against his cheek and then holding it up to the light. He’ll sing ‘Five Little Letters jumping on the bed’ to himself or another alphabet song that he’s heard at school or via YouTube.
Two years ago, we wouldn’t have thought that he’d have made the progress he has. Jake is using more sentences in the right context these days, and is more likely to ask for more milk than drag us bodily to the fridge. We hope that his love of language bodes well for the future, and will continue to grow into something that will help him communicate even more effectively.