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. 

Brothers and Sisters 

We have to watch out that we’re not inadvertently neglecting Martha and Beth in the whirlwind of our daily lives with Jake. Or the Jakinator, as security services worldwide know him. 

They’re two of the best kids ever and having Jake around has only made them more patient and caring. They’re also 15 and nearly 13 so, before this post gets too sickly, they do have the power to be right pains too, obviously. 

Thankfully I’ve always been down with the kids #fam #squad #midlifecrisis

It’s a concern that so much of our lives is taken up with sorting out Jake that we don’t find proper time to talk to, and listen to, the girlies. I’m sure there are times when they feel like that, but I like to think they understand why. Particularly when Jake is still charging around the sitting room at 10pm, and it’s getting hard enough for us to string a sentence together. 

The good thing is they do seem to like us (weird) and just get it that Jake needs the extra attention if we’re to stop him hurling himself off the chest of drawers on to the sofa, shouting about no more monkeys jumping on the bed. 

We do of course try our hardest to talk to them both properly. I share my fatherly wisdom about life. They roll their eyes and get decent advice from Sally. It’s harder when Jake is wired and bouncing off the walls though. 

The age gap probably helps. They’ve never been jealous of Jake, and always persevere with hugs and cuddles even when he is not in the mood (i.e. shouting ‘no Matty! Get away!’) and can eventually hug him into submission. Ah, I’m sure you’re picturing that scene of sibling bliss. 

So, this post is a bit of a shout-out about my very fine kids, and a note to myself that, even when Jake needs calming down in the midst of a meltdown or when he’s just smacked me in the face because I wouldn’t give him a third bowl of Shreddies, and it feels like he needs 100% of my time, I need to make that time expand to as near 300% as I can (apologies to maths pedants everywhere). 

‘To sleep, perchance to dream’. (Fat bloody chance, Bill).

So Jake fell asleep in the car this evening and is <whisper> still asleep.

Now, we will probably reap the whirlwind of leaving him sleeping at 7.45 in the evening. Come midnight, he’s probably going to be jumping up and down on our bed, yelling repeated lines from ‘Toy Story’ and asking for juice/milk/cake/to go to Poppy’s party (still 3 weeks away – pray for us). 

The thing is though, it’s oh so quiet and that is a sweet thing. 

It was 11pm before he eventually passed out in our bed last night, after three hours of parental cajoling, frogmarching and pleading to settle him in his own bed. 

Being the superhuman that he is, Jake has no need for our puny internal clock that equates the darkness of nighttime with sleep and settling down. Jake at 11 at night is pretty much the same as Jake at 9 in the morning. One big bundle of boundless energy. 

Complaining about being tired is boring and sleep-inducing in itself so I won’t be doing that. Suffice to say, if you see me on the morning school run and I look like I’ve slept in a hedge, this is normally why. 

There’s a lot written about how autistic kids don’t seem to need as much sleep, and Jake is proving that theory. 

It’s a good job he’s the funniest boy I know so at least it’s normally a privilege to spend all those many, many extra hours in his bouncy company. 

Just every now and then though, it’s good to remember what the quiet is like. Shh, please close this post really quietly when you leave.