A day of big news

In the great scheme of things, with all the huge events going on in general life, this isn’t a biggie. 

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. 

Words, words, words

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. 

Jake’s speech is gloriously non-filter. 

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?


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. 

On World Autism Day

I couldn’t let World Autism Awareness Week pass without an inane ramble. I think I’ve officially become an autism bore now 😬

The National Autistic Society’s strapline is ‘Until Everyone Understands’. This week, I’m really encouraged that loads of people have been talking about autism, sharing and liking social media posts and videos, and generally being all-round great advocates. 

People who didn’t know it was awareness week spoke to me about radio programmes to which they’d listened and how they’d learned things they hadn’t known before. 

You’re obviously more likely to know about autism if you’re personally touched by it in some way, but this has been so many people. 

At Jake’s school, they’ve had activities, talks and bun sales all week. An older brother of one of Jake’s mates told his class that he knew about autism because his little brother had Jake as a friend. 

I’m also incredibly proud of my wife Sally who went into Jake’s school for a Q&A with staff there about what our life is like (frantic, stressful but fab). 

I hope that everybody feels like they can talk to us about autism without feeling awkward. Given half a chance, we crowbar it into most conversations anyway so they’re only saving us from boring ourselves. 

Since I’ve found out that people are actually reading this blog, I do get the fear when I come to write something. It was different when I was basically just ‘talking’ to myself. 

For the dozens of people who are probably bored, the lovely messages from people who are enjoying our adventures and maybe finding it helpful in some way do push me on to keep spouting forth. 

For us, and Jake’s sisters, and most importantly, for the Jakenator himself as he navigates life, this week has been a beautiful thing. 

Made it!

It’s been a long old week. We had to pick Jake up from school on Monday afternoon because he had a dodgy stomach, and then he started getting a rash and really itchy hives across his shoulders, down his arms and his legs. His stomach still isn’t right and the doc has prescribed more antihistamine for the rash and asked us to keep a food diary for a couple of weeks to see if it’s a food allergy. 

We haven’t had a night’s sleep since Sunday and are wandering around like wild wraiths. 

Apart from the upset stomach and wind that could strip paint, Jake is very happy as he loves being at home. We’ve had Toy Story marathons, we’ve sneaked out to the park, and we’ve laid out his magnetic letters in alphabetical order every hour. 

It’s hard working out where and when he’s hurting. Asking for a cuddle usually means that he’s feeling rough, but ‘I feel a bit sick’ is possibly a line from a film as it’s then followed by a bit of scripting about needing to be rushed to a hospital (normally with a beatific, non-hospital-induced smile across his face). 

I’ve squeezed work into the gaps but it’s been a struggle. I think I frightened a few people by switching on my webcam during a Skype call on Wednesday. 

If Jake has a food allergy and life is going to continue like this, then blimey. If it’s an allergic reaction to his melatonin and we have to stop the stuff that’s doing a good job of regulating his sleep (well, until he wakes up at 1am every night), then double blimey. 

I fell asleep at Beth’s eye test today as the optician turned the lights off to look in her eyes. You have to be born with that level of class. 

Stimming and bouncing

Jake has a number of favourite things that he likes to do to burn off energy and refocus himself when life is crowding in on him. 

Self-stimulating behaviour, or stimming, isn’t specific to autistic people but it’s very common with those on the spectrum. It’s typically repeated behaviour that is used to calm and regulate the person doing it. 

Some specialists think it should be minimised and discouraged. There was that time when Jake was charging about, repeatedly shouting a line from Monsters University – ‘and this is my Mum’s new boyfriend’ – in a crowded room of our friends, so maybe they have a point. Generally though, Jake will stim when he might be anxious or nervous or tired, so what he doesn’t need then is the extra pressure of being told to stop doing what might be helping him. Unless he’s trashing the place, we don’t tend to stop him as there’s typically a good reason why he’s doing it, and it’s better to work out why he’s feeling the way he’s feeling. 

Jake likes to charge up and down the room periodically, normally shouting out lines from his favourite programmes. If you’ve ever seen the old ‘Arsenic and Old Lace’ film with Uncle Teddy leading the charge through the house, that’ll give you an idea. 

He does it at school too. Not too big a problem in the Reception class, but from September, when he’s expected to sit at a desk, it could get interesting…

He likes to throw in a bit of hand-flapping too, flickering his hands in front of his face so they catch the light. 

The repeated lines from Toy Story, Monsters University and a dash of the Gruffalo or Paw Patrol, are also part of the mix and serve as a familiar and well-trodden path for him if life is getting confusing or too much. 

One of his favourites is bouncing. On his bed, mostly. Then on our bed. Then on the sofa and, at a push, the chest of drawers next to the sofa before a giant bounce takes him flying on to the sofa. 

Like most four-year-old boys (and puppies), he likes burning off excess energy and it certainly does that. At the end of a hard day of navigating a confusing world with a different set of coping mechanisms, maybe he just wants to let it all hang out. 

It also makes him happy. Like really happy. The look of joy on his face as he hurls himself around the place is fantastic. Especially with a chorus of ‘Seven little monkeys jumping on the bed’ sung at 270 decibels. 

There’s a film called Snow Cake about an autistic woman (we do watch films that have no autistic people in, honest) played by Sigourney Weaver, and starring Alan Rickman. They’re both brilliant as you’d expect, and the main character has a trampoline in her yard that she uses to calm herself down and get through a very stressful and difficult experience. 

Jake also has a trampoline in the garden which will go back up as soon as the weather gets better and we guarantee that a gust of wind won’t take him sailing down the street in it. The combination of the trampoline, 1200 of Jake’s plastic animals and himself bouncing like a rubber ball is a joyful work of physics to behold. 

It’s not just bouncing or running though. All kids do that. It’s a compulsion and a real need. Like those superheroes who absorb all the power from a nuclear reactor and save the city. If Jake didn’t burn off that energy and reset himself when the world gets too much, our house would implode with the pressure.