Let it snow, let it snow, (please God) let it snow

We woke up last week to a few inches of fluffy snow. We knew this because Jake was awake at 4.30, staring out of our window and giving us regular updates.

By the time we’d done the usual pre-school rushing, there wasn’t time to play outside so he had to make do with a wintery walk to school and the promise of a snowman after school.

Rule #43 of the Autism Handbook, as you probably know, states never, ever make promises on which you can’t deliver. Really, it’s my own stoopid fault.

Throughout the day, we watched, crestfallen, as the snow melted away to leave only the tiniest traces on the tops of walls and in the corners of the garden.

Soooo, jump to school pick-up time and Jake is ready for much fun playing in the alpine scene that should be our garden.

When he sees there’s more chance of snow in Biarritz that day, he’s not a happy man.

In fact, he stands in the window, screaming his head off and shouting that the ice can go away. No amount of reasoning will work about how there may be more snow tomorrow – Jake has little concept of the passage of time and ‘tomorrow’ may as well be years away.

Before a full-on meltdown occurs, I bundle him into the car and we speed off in search of some last remnant of snow in West Yorkshire. Like some crazed tornado-chasers, we go from moor to field, looking for any small patch of snow that has missed the thaw.

A few miles later, we find enough on Shipley Glen. Apart from one final hardy dog-walker, we’re the last people left, braving the sub-zero windchill temperatures and fading light.

We go for a quick jog. There’s enough snow left to make a mini snowman baby and a few snowballs to chuck at a farm wall. Jake jumps up and down, kicks some snow around into clouds and shouts about Paw Patrol.

As my nose freezes, splinters and falls off my face, and we head back to the car, Jake holds my hand in his new HUGE gloves, and has the biggest smile on his face. The hypothermia is worth it.

HUGE gloves
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Hello darkness

After a long period of getting Jake’s sleep on an even keel, this week has been a killer. We’ve had one night where he’s slept for most of the night. This morning, he’s been up since about 4am. Before that, it was 3.30 and a few 5.30 starts were starting to feel like a luxurious lie-in.

It’s a good job he’s cute…

Sally has given up trying to sleep with Jake lying on her back, and is already downstairs making tea and trying to explain why he can’t have crisps for breakfast. Jake is SO awake, too. Not just a cute, bleary-eyed angel, but a full-on, energetic explosion. He’s now screaming because he can’t have Quavers and doughnuts for breakfast, slapping the wall and himself because he’s so mad.

He’s already on a high dose of Melatonin most nights to regulate his sleep. Without it, his body doesn’t switch into sleep mode at all, and he will stay up until near midnight every night. I don’t know what we’d do without it.

Becoming invisible before bedtime

We’re not sure why this week has gone to the dogs. Usually, Jake will sleep in his own bed from 8ish until midnight, before running through to our room. There then follows bed-swapping reminiscent of a French farce, before we all finally get some sleep.

Weekend tomorrow, so let’s hope things get back to normal. Thank goodness we work for ourselves and from home; working a 9 to 5 day just doesn’t fit with our current home life. We’ve struck a happy balance of being productive in very efficient fits and starts throughout the day, getting rid of the extraneous time that I used to spend in ineffective meetings and pre-meeting meetings.

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On the plus side, Jake is settled into school full-time, and is happy going at the moment. The fact that he’s dropped off by two sleep-deprived zombies doesn’t seem to phase him.

Back in the room

So, it’s been nearly six months since my last post about life with Jake.

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I’ve written a few long posts over the past six months, but they’ve either been too angry or full of frustration or just navel-gazing moany, so they’re all sitting in my draft folder, feeling sorry for themselves.

In a nutshell, we’ve been very tied up with meetings and various discussions about Jake’s schooling.

2018-11-11 14.38.16.jpgWay back in April, we met with school to review Jake’s EHCP (old style ‘statement’) with a view to proposing a flexi-schooling arrangement where he’d spend three days at school and two at home with us. Our hope was that Jake would relax more with us, that we’d have opportunities to try lots of different activities with him to see what might engage his learning, and that he’d be less anxious at school and hopefully more engaged in learning there.

So, accessing the curriculum (✔️), socialising (✔️), reduced anxiety (✔️) and a variety of educational interventions (✔️). How could it possibly go wrong??

Sadly, we couldn’t get it to work.

On the huge plus side, at the moment, Jake seems settled at school and is doing really well. His teacher is great and proactive, and his two teaching assistants are persevering, even on the off days when he’s not engaged.

Jake likes to surprise us and, in a dramatic turn of events, has started picking up a pen and writing short words. Without constant prompting, cajoling or bribery.

2018-11-09 17.29.43It doesn’t seem that long ago since one of his objectives at school was to simply make a mark (any mark!) with a pen. His teaching assistant who has followed him into Year 2 has worked with him a lot on holding his pen properly, and starting to write words.

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We are taking him swimming for a morning a week as he struggles with getting changed for PE at school, and he’s also allowed to eat his packed lunch in all the playtimes during the day. That means he can finish earlier and get more than ten minutes playing outside.

This term, he hasn’t tried to hide his school uniform or had a huge hissy fit in the morning. He marches into school with his bags and will merrily say hello to his teacher.

In spite of all the ups and downs of the year, it feels like we’ve made it through to the other side.

 

 

 

For World Autism Awareness Week

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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’).

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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.

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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…

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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.

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Autumnal rollercoaster

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’.

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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.

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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…

Back to school

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.

Those monkeys