The tree is up!

Early for our house, but we’ve all been glum this week and needed some festive cheer.

Our eldest is home safely from her first semester at university, after an odd but mostly enjoyable start. Our youngest daughter is bossing A-levels. Jake is thinking every morning is Christmas and coming out all fists a-blazing when he’s told that it’s STILL another school day. Christmas itself cannot come soon enough.

A healthy, nutritious journey back from university 😱😬

Jake would be perfectly happy with just one present about which he has become transfixed. It costs all of a fiver and, to anyone else, it’d probably be a bit of a stocking filler and a last-minute add-on present that you might grab on the way to the cash desk. To Jake, the day isn’t complete without him asking to see a picture of it on my phone, and Father Christmas will not know what’s hit him – probably quite literally – if he doesn’t rock up with it.

Now it’s fair to say that Jake is obsessed with the three little pigs. He spends day after day drawing new versions of the story. They get more detailed as he recalls lines from versions he’s watched on YouTube, and the adjectives used to describe the ‘ruthless, sneaky and sly’ Big Bad Wolf get more and more sophisticated. Together with Little Red Riding Hood, the Three Billy Goats Gruff, The Gingerbread Man and Jack & The Beanstalk, those pigs have joined a canon of stories that Jake – and we – read until the cows come home.

So, this year’s festive favourite is another version of those porcine builders.

Jake absolutely loves Christmas and he loves unwrapping. It doesn’t really matter what’s inside the actual presents, but the frenzy of wrapping-paper-ripping and casting aside of what’s inside is joyous.

We honestly can’t wait. In addition to the cycle of disappointment and anger when he realises that he has to go back to school, he also has that ‘end of term’ knackeredness that most kids (and teachers and parents) get.

Counting down the days

After this year with its wider issues, and some rollercoasting with our business at the moment, we need some hibernating time to recharge and enjoy being with one another.

We will go to Midnight Mass, hoping that Jake won’t be too feral, then spend a quieter Christmas than usual, zooming the family that we can’t see, and enjoying being with the few that we can.

We shall also be reading The Three Little Pigs at least eleven times hourly. And it will be bloody lovely.

Happy Christmas and best wishes for a brighter 2021.

Negotiating a very different summer

I try to keep it light in this blog, but it’s been a tough few weeks. Work is a concern (events management not the easiest industry in which to be right now), we’re on the run-up to A-level and GCSE results for our daughters, our eldest is preparing to leave for a very different experience at university in the autumn, our youngest daughter needs us and we have Jake’s return to socially-distanced school looming next month.

On the whole, Jake is fine being at home and busy drawing and reading (still very three little pigs-centric). In fact, it’s been getting harder to persuade him to go outside with us, even for a quick dog walk. So, last week, we ventured out to a shop with him after much persuasion and cajoling. So far, so good.

What we hadn’t properly considered was how he’d find the fact that everybody is now wearing masks and that people working in shops are behind plastic screens. He now has to squirt his hands with gel at every shop and get used to us holding him back so we don’t cross paths with other people. He was very quiet and distant while we shopped and since then, has woken up most nights, saying he’s scared and to check that we’re still in our bed and wanting a hug.

I tried talking to Jake about how funny we looked in masks but didn’t get much reaction. It has to be bizarre for him to suddenly find everyone masked-up when he does finally go out, and not to understand what’s going on, why he and his sisters haven’t been to school for months, and why we are now cancelling our 3-day ‘road trip’ (like in Toy Story 4) because our city is in local lockdown again.

Thankfully, we grabbed a couple of days back in Wales just before our city went into further lockdown. Jake had a ball.

Indoors, he has also been shouting and screaming much more than usual. Bath time is never fun but we got through it on Monday until Jake decided he didn’t want to put on his pyjamas and went into a complete flat spin of screaming and hitting out. He calmed down eventually but not before biting a huge hole in his pyjama top (thank goodness for my enviable sewing skills).

We’re all just tired, of course, and, like everyone else, the fact we’re all at home and unable to do much is exacerbating every tiny stress and strain. On the plus side, we are taking a few days away from running the business and will recharge our batteries.

Jake at home

Hope everyone is doing OK during these crazy times. Jake is actually doing all right in our enforced lockdown. He is enjoying being at home, and the thought of having every day to play, draw pictures and tell stories (with a short walk outside) suits him well.

It later transpires that this sandwich is made with ketchup 👍🏼😬

As he is only seeing us, he’s relaxed and not having to hold in any behaviours so, again, that’s making him happy. He can bound from sofa to sofa and burn off spare energy when he wants.

We’ve given up trying to watch any TV programme in one sitting without Jake dashing backwards and forwards in front of the screen.

He doesn’t know why we have this extended break at home. We’ve tried to explain that he can’t go on the things at the playground because some people are poorly at the moment so everything needs cleaning from germs. He looks very bemused and momentarily like he might kick off, but then is easily distracted.

We have decided with school to keep Jake at home until at least September. It’s not fair on him or the staff to expect him to know why he has to keep a safe distance from his friends or why he has to wash his hands all the time. He continues to hit and scratch us if he gets frustrated and being in school in odd conditions will throw him and he will hit out.

The change in him over the past months is palpable. He’s much more relaxed and (mostly) calm. He gets to sleep in a bit longer (and in his own bed too – major win of the lockdown!) and can spend the day drawing pictures, making books, and playing with us and his sisters. Everything is recognisable and there are no surprises. He talks more and engages with us.

Just some of Jake’s collected works this lockdown

For the time being, this is enough. It’s hard getting and keeping his attention on home-schooled work, and we’re also working full-time running our business, so concentrating on his wellbeing and happiness are enough for the moment. To be honest, it’s an absolute joy having him and his sisters at home and his smiles and hugs are a welcome relief from the crazy world outside.

Walk on

Jake’s weekly horse ride has been cancelled for the last month because of the horrible weather. The stable is in beautiful countryside and next to the river, so it inevitably bears the brunt of the elements.

Jockey Jake

Yesterday though, we returned! Jake was fairly nonchalant about the whole affair, but when he saw his horse Billy again, he beamed his head off. When we first started going and it took a few weeks to progress from walking next to Billy to Jake actually wearing a helmet and then finally being persuaded to sit on him, he didn’t seem particularly attached to Billy. He’d probably never say it anyway. Then the day came when Billy was up in the field and Jake had a different horse to ride. In spite of a lot of cajoling and blatant bribery, he wouldn’t be persuaded to get up on the new horse and just about managed to walk next to her. The following week, Billy returned and they’ve been a team ever since.

Hi ho, Billy

With a bit of prompting, Jake will tell him to set off and to stop. He’ll stroke his mane and brush him. There’s a mirror at one side of the riding arena and Jake will always look at himself and Billy as they ride by.

Disgruntled Billy the red-nosed reindeer

Jake will either ride Billy up and down the lane (clocking up his mileage for his Endurance certificates) or they’ll get up to all sorts of manoeuvres in the arena, putting coloured hoops over cones or putting things in boxes en route. Now and again, Jake can be persuaded to give Billy a bit of a trot, but he’s still not too sure.

Loving a bit of bling

Jake and Billy have now earned seven rosettes from the RDA (Riding for the Disabled). His name appears in a national league table of distance riden (36 kilometres at the last tally) and the stable is one of the few places that he doesn’t need persuading to visit. The volunteers there are lovely, merrily braving the winds and drizzle to get the kids and their horses out and about.

There’s just something about being high up there on Billy, above the rest of us who are walking beside them both. We sing daft songs along the lane and catch up on the past week. Jake studiously ignores all this, as is his wont, and then sometimes I’ll look up at him as Billy is clip-clopping away, and he’s got the biggest smile on his face as we pass by the trees and the little streams that come down the hills.

Story time

This is a post about Jake’s writing. One of the goals in his Education, Health & Care Plan (EHCP) two years ago was to independently make a mark with a pen, pencil, crayon (anything!) on a piece of paper.

In Reception class, we’d eventually managed to cajole him into writing his name on a piece of wipeable card with his photo on it.

Although he liked painting, he showed zero interest in writing or colouring-in. We didn’t really know for sure whether he was right- or left-handed because he didn’t hold a pen for long enough. If we tried to encourage him, he’d put the pen in our hands and say ‘you write it?’

So this post is an indulgent celebration of how far he’s come.

Jake has just brought me a story that he’s written and illustrated. His obsession with ‘Five little monkeys jumping on the bed’ goes way back. Thankfully, we’ve got through the long stage of him wanting to spend every waking hour watching YouTube videos of every cartoon character EVER CREATED jumping with their four other friends on the bed. That was fun and a half. We’ll still find monkey toys lined up on his bed, all ready to jump. So, it’s only right that his first magnum opus is about those darn monkeys.

‘Mummy called the doctor….’

He’s since progressed to tales of his school friends falling in the bay and (thankfully) being rescued.

All from a boy that wasn’t too long ago learning with his brilliant Teaching Assistant how to hold a pencil in a writing grip, rather than a fist.

In addition to his drawings, he’s also confident enough to sound out letters to build words and willing to guess when he’s not sure.

I remember worrying that Jake might never hold a pen. Way back, I worried that he’d never speak in sentences or in context. Before that even, I worried that he wouldn’t acknowledge me. At the time, it felt like these things completely filled my head all the time, but he took a leap and now they’re part of everyday life so we don’t even think how huge they were. We obviously have a whole new set of worries at this stage in his life but maybe, in time, they’ll seem as remote and nebulous as Jake continues to smash through them.

Oscar and Jake

So, we got our new puppy Oscar just over three weeks ago.

As a family, we’ve had goldfish (one suicide, many clandestine replacements of dead ones and eventual muted celebrations when the last remaining one expired) and a cat (hit by a car after only a few weeks). In the spirit that things can only improve, we finally got ourselves a puppy. We have been thinking about getting a dog for years (to be honest, we took less deliberation about having our three kids) and, finally deciding that the time was never actually going to be 100% right, we took the plunge.

Oscar is a cockapoo, part cocker spaniel, part poodle, part plant-destroyer, part incontinent mentalist. Thankfully, he’s also the cutest dog ever which works in his favour.

We’d obviously read lots about dogs and the benefits to autistic kids, but were still a bit wary about how Jake would find our new furry lodger.

So far, so good. When Jake does engage with him, he finds Oscar hilarious. He strokes him (‘Oscar, you have a very hairy back’), has read him bedtime stories and finds it very funny when Oscar is just excited enough to run around with him without going too crazy.

Jake is copying some of the training that we’re doing, telling Oscar to sit down as if he’s a weary classroom teacher with an unruly pupil. His distribution of dog treats is pretty variable and Oscar can suddenly find himself with a mound of them for no particular reason, so we’re watching them both like hawks.

Oscar has his vaccinations this week and we can then take him out for walks. The puppy is going stir-crazy confined to home so will love it. We like to think that Jake will enjoy taking him for walks too.

It’s the start of the summer holidays today so many weeks for us all to really get used to one another. Jake has been hitting out again at school for the past couple of weeks. We are all baffled at the cause or reasoning after a long time of relative pacifism; hopefully Oscar will give him something else to focus on over the next six weeks.

On the school front, Jake has had a brilliant year. His writing and drawing have progressed hugely, and he’s become much more sociable with staff and his classmates. Apart from the periods of pushing and hitting, he has done so well, supported by an amazing teacher and his two fantastic teaching assistants.

At Sports Day last year, he ran around on his own (with a teaching assistant) and didn’t take much notice. This year, he ran a sprint and the egg & spoon race (even having time for a nonchalant wave to us as he ran past).

So, family and other animals, let the summer begin!

Pushing and hitting

Since I obviously tempted Fate last post by saying that the incidences of Jake pushing other kids were few and far between, we’re currently at the end of a six-week run of him hitting, scratching and pushing his poor counterparts.

Looking back at the daily update that we get from his teaching assistants, it suddenly started in early April with a shove and – apart from the Easter holidays – has remained constant since then.

We’re at a loss to know what has kicked this off, and school are also scratching their collective heads.

Here’s what it could be:

  1. Pre-Easter holiday exhaustion
  2. Post-Easter holiday exhaustion
  3. Me being out a fair bit, rehearsing for a play
  4. My wife and daughters out in March, also rehearsing
  5. The weird developmental phase that kicks in around 7yo
  6. Anxiety at being constrained by the school building
  7. Copying something from his favourite Despicable Me film
  8. All of the above
  9. Something else
  10. Absolutely none of the above

We’ve asked school if they will call out the autism teaching specialist from the Council to observe Jake and see if she can spot any triggers. We’ve got nothing.

Saying Sorry

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Jake and his (unscratched) cousin

It’s always a bit sick-making when Jake’s teacher comes over to us at the end of school. Sometimes, it’s positive news. Sometimes, it’s not.

Jake scratched a child on their face the other day. As far as can be ascertained from expert witnesses present, they were all playing a game of having to conquer one another – possibly knights, possibly mad dictators – and kids got shoved a bit. Either Jake was pushed, or saw one of his friends being pushed, and he scratched this other lad’s face.

His teacher handled it perfectly, explaining to all concerned that violence is never an option, and reinforcing the message to them all day. Abstract concepts don’t really make sense to Jake so the idea of actually being sorry and what it means is a tough one to understand, of course. If we tell him ‘Say sorry to X’, he’ll just repeat ‘Sorry to X’ and carry on with his life. That’s obviously not a reason to stop doing it, but it adds another layer of opaqueness to the thing.

Back in the day

When Jake’s older sisters ever got into school scrapes (verbal rather than physical), we could sit them down and build up a complete picture of the chain of events that had led to the fallout. We knew the other kids and their families after the usual run of children’s parties and play-dates; we knew things that had been said perhaps months ago that had been dredged up in the heat of the argument; and we understood the dynamics of the friendships in their classes.

2019-02-21 20.46.22It’s a bit more of a detective story with Jake. Firstly, and most importantly, we rarely find out the identity of the poor, scratched child (unless it’s the one with the huge scratch mark on their face at school pick-up time) as teachers have a duty to anonymise all parties. We ask Jake but he will name all his friends (plus most of the Toy Story cast) as he runs the scenario over and over in his head with a new person in the role each time. To complicate matters further, there is one boy in his class that he always refers to as ‘Poor XXX’ with a pitying shake of the head. We’ve checked and there is no foundation of truth that ‘Poor XXX’ has today variously fallen in the snow, been covered in ketchup or fallen in the sea whilst taking a photo of the blue booby bird.

2019-02-10 20.47.50
Ah, that day when Jake found his Mum’s makeup

The upshot of this is that we usually don’t know to whom we have to apologise. Thankfully, most of the parents are very understanding and the kids in Jake’s class are far more accepting and tolerant than many adults I’ve met. Even so, if my child came home with a bloody great scratch across their face, I’m sure I’d be as worried and angry as the next parent and concerned whether it could happen again.

On the whole, Jake is managing OK at school with full-time support. He’s a very placid and even-tempered kind of boy but, if he’s feeling that his space is being invaded or he sees another of his classmates being pushed around, his natural reaction is often to push out. In spite of a lot of work with Jake around ‘hands are not for pushing’ (or scratching, it transpires), it would take a teaching assistant with the reactions of a panther to have time to intervene if he’s feeling threatened.

Thankfully, these incidences are few and far between, school deal with them very well and most days pass without any problems.

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Jake contemplating life during his class assembly

The toll on our levels of anxiety is huge though, especially as thoughts of high school in four years’ time are starting to manifest themselves. Will Jake even cope with high school? How will he manage with so many more kids around him, all jostling and shoving him? Will he get picked on? What if he doesn’t understand what some of the other kids are getting him to do or say? What if he shoves a teacher? Will there be any funding left for teaching assistants and SEN support by then? Is there a high school that is ideally Jake-shaped?

As regular readers will know, we live for the next challenge so all of this isn’t insurmountable and we will find a way through.

In the meantime, we are very grateful that Jake is surrounded by great teachers and teaching assistants, and a class full of kids who know when to give him a bit of breathing space.