Ripples

If family life is a pond, the idealised life (the sort touted on Instagram by the likes of the Jamie Oliver and Kirstie Allsopp) would be a glossy surface of perfect reflections.

  
Ours isn’t. Ours is a pool during a rainstorm, splashes made to disrupt that surface: all of the pressures that disrupt the smooth flow of life.

One of those splashes is SP. Which sounds harsh, when he’s a bright, charming little boy. But his rigidity and meltdowns are a phenomenal pain in the arse, not to mention the battles with authorities to get the services SP needs and is entitled to. It’s time-consuming, draining and requires a lot of physical and mental focus. 

The splash he makes in our family pond reverberates and affects all of us.

  
Not just myself and Husband (me in terms of daily care, meetings and conversations as his advocate, Husband emotionally as SP pushes him away) but the others too. My dad and older daughters who get roped into childcare when work gets in the way, little Teddy who bears the brunt of SP’s lack of desire to share and Amy who doesn’t always get the attention she deserves or needs.

This week I was asked to a meeting at the school. Despite a start to school that exceeded expectation, it’s been decided that SP should only attend morning sessions until half term. The school just doesn’t have the resources to ensure that SP gets the support he needs whilst also settling in the  other 30 children in the class. 

Splash!

I should have been more proactive when it came to ensuring resources were in place for him starting school. I should have started the EHCP process sooner (although their argument of suck-it-and-see may have still been the result). I followed the advice of the education staff around me. I should have fought harder. Or I should have chosen a school that could meet his needs as standard. But are his needs severe enough to need a place at a special school when they’re scarce enough for all disabilities? There are no ASD specific schools in the area and that in itself makes me angry, but anger just takes up more energy and achieves nothing.

And thus arrangements fail and I’ll be relying on other people to fill in where work and childcare clash. There’s the pressure to be available to everyone, the guilt of being unable to achieve the impossible. Guilt also at wanting SP to conform the same as those other neurotypical kids to make life easier, when without other splashes in the pond we’d be able to focus purely on his needs.

  
But worse. Amongst the ripples, the largest get focused on the most. It’s easy to ignore smaller splashes. And so it is with Amy. The meeting also included concern about her as her anxiety levels have increased to an extent that she will barely speak at school. There’s nothing wrong with being more introverted or sensitive and this has always been the case, but now it’s holding her back. Her anxiety is making her scared to try in case she’s wrong or she fails.

SPLASH!

But she’s not the failure – I am! I’ve failed her, by letting her go under the radar. When one child demands so much attention it’s so easy to forget that the ‘normal’ ones need support too. Whatever the underlying cause of her worries, we hoped they’d just go away. But life doesn’t work like that.

  
Outside today it’s raining. Drips and splashes making everything harder, making us weary. It reflects how I feel. I want to be positive, but at the moment it’s hard and I crave a calm pond. 

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Green card to normality

I’ve come to realise that positive posts are far harder that miserable/snarky ones. It’s far easier to write about anxieties and mishaps than it is about laughter and happiness, because writing about good things that have happened makes me sound overly-mawkish or like a bragging dick.

Which is why it’s taken more than a week to sit down and write about our trip to Disneyland Paris. To write about five days of such loveliness that on the last day I sat in Fantasyland unable to stop crying because I didn’t want it to end.

(I’m surprised there isn’t a cast member appointed to chaperone weeping visitors  into an inconspicuous location, the same as they have vomit-sweepers to deal with roller coaster-related fallout. Surely it’s unacceptable to have middle-aged women crying in The Happiest Place on Earth?)

The reason for the tears: Disney thinks of everything (management of weeping mums aside). I’d been dreading the holiday – noise, people, music, changes to routine and different food options all being triggers of SP’s meltdowns. We’re a family of Disneyphiles, but taking SP suddenly seemed like a massive mistake. But for five days we felt like a normal family, thanks to Disney’s acceptance of those with mental and cognitive disabilities.

  
I’d done my reading up in advance. It was going to be possible to get a Priority Pass by rocking up at City Hall with a medical certificate. I’d told Amy about it.

Me: You know the thing that SP has that means he can be really awkward and selfish and really hard work?

Amy: Yes.

Me: Well, it also means we’ll get to jump the queues at Disney.

Amy [eyes opening wider than I’ve ever seen them]: Really?…[running up to SP and giving him the biggest hug ever] Thank you!!!

Unfortunately, I’d done a better job of reading than I had of organising and with SP’s formal diagnosis only being a couple of weeks prior to our trip and amongst SP being ill, having an exam at work on top of normal work, the car failing its MOT and the GP surgery being a drive away and the Easter holidays meaning everything was shut, I didn’t get around to organising the certificate.

So instead I winged it. I’d received one report from SP’s assessment feedback meeting. Typically, it was the one report that didn’t explicitly say SP had autism. But it had an NHS letterhead and posts on various message boards had said that they don’t tend to really look at the paperwork.

I stood at the City Hall desk, as the cast member flicked back and forwards through the report. ‘It’s quite long. Do you have anything else?’ Luckily I did – I whipped out SP’s last nursery school IEP. Highlighted yellow and in bold letters it stated that SP had cognitive functioning difficulties and behavioural issues. The card was issued! The trip suddenly became a lot easier!

  
Day one though and we felt very British about our privilege. ‘We’ll only use it on rides where he wouldn’t cope with the queue.’ So we waited normally for the Mad Hatter’s Teacups and Le Pays de Contes des Fées ride. Although SP was happy on the rides we worked out that 15 minutes waiting was about his limit. It was a lesson we could have done without learning in what turned out to be an hour long wait for the Disneyland Railroad. The card got used a lot more after that. On the last day we blitzed through our favourite rides in The Studios in an hour, including a go on Ratatouille whose normal queue stood at more than 2 hours by 10.15am.

And using it came with no judgement. A look at the card by the cast member, a special hello for SP and we were on the ride as soon as possible. With two adults this meant within minutes, when it was just SP and I (because unless you’re autistic It’s A Small World can drive you a little crazy, but with autism you can’t ride it enough!) then we’d have to wait for a slot. But it gave an insight into how effortlessly they dealt with a whole remit of disabilities – why can’t it be as easy in real life?

The card also came in unexpectedly handy for Disney Dreams. SP was only allowed one companion for parades and the fireworks, so we initially decided we wouldn’t use the card and we got a good spot anyway. As long as he was being carried he was fine with the crowd and focused his interest in some other kids playing with their iPad. But then I became acutely aware that there was a child behind us who couldn’t see. So I took SP out to the disabled section and the other child got a decent view.

  
Initially happy but tense, SP increasingly relaxed over the five days we were there. As he got to discover his favourite rides he made requests, which we peppered with Amy’s requests with ‘first’ this ‘then’ that. ‘Okay,’ became his standard, happy reply. He smiled more and I realised that the deep joy of SP’s smiles are that they reflect that he is genuinely enjoying the moment. SP doesn’t do fake smiles.

  
When he became overwhelmed at any time and needed a break we headed back to the hotel. That we could blitz around our favourite rides without the wait times meant that we didn’t feel that we were missing out. 

For a child normally keen to remain glued to the sofa, permanently attached to technology, existing on a diet of crisps and chocolate buttons, we discovered a little boy happy to be outside, who barely requested his iPad (although he still existed on crisps and chocolate buttons, which I’d bought over in bulk to ration throughout our days away). We  got noticed but not in the way I feared. ‘I saw you the other day,’ said a man operating It’s a Small World, ‘on the Teacups and then in the maze.’ Of the thousands of visitors to the park and he’d remembered us…and not because there was a ruckus!

And it wasn’t the only time.

‘I know you, you’ve ridden already today,’ said Elsa, again on It’s a Small World.

‘Yep. It’s our twelfth go,’ I replied.

‘Twelve?! Doesn’t that make you go a little crazy?’

‘Yep. But it’s his favourite.’

‘Well, in that case…’ and we were swiftly chaperoned to the front of the next boat for the best view.

  
Five days and only two meltdowns (once because I wanted to get a photo of Amy when SP wasn’t keen on me putting him down and once on the last day because we couldn’t go back to the hotel). Well, two meltdowns and my own emotional breakdown at the loveliness of it all.

Reality has felt more grey than ever by comparison. SP has fallen back into his usual preferences. But if you do want to elicite giggles you just have to is offer a whizz around ‘like the spinny cars at Disney.’ 

It’s Disneyland’s policy to ensure that their guests enjoy every magical moment of their stay. They definitely achieved this for us and helped us make some family memories that will be forever precious. I wish I’d noted down each and every cast member who helped us achieve this, but there were so many. Maybe next time I’ll collect photos to be able to thank them all properly. Because there has to be a next time when the House of Mouse does its thing so well.

The Sort of Family You Notice…and Not in a Good Way

New Year’s Eve 2015 and we’re at the Harry Potter Studios. 

It’s pouring with rain outside. And I mean, really sheeting it down. Nature’s own precipitation is putting the studio’s special effects snow to shame. The porch of 4 Privet Drive has turned into a waterfall.

Instead crowds of families huddle over the shared realisation that they’ve just spent five quid on a butterbeer …and it tastes disgusting! But towards the back of the café comes a raised voice. 

“Look at the state of you! You’re SOAKED.”

People look without looking as though they’re looking. A boy of 9 or 10 is being stripped of a dripping sweatshirt, his hair plastered to his head, his face ashen.

The raised voice – the boy’s dad – starts swearing. “I f*cking TOLD you NOT TO GO IN THE F*CKING RAIN. WHY DO YOU HAVE TO TAKE THE F*CKING P*SS?!!!”

The collective psyche of the crowd shifts uncomfortably in its plastic seat.

If there’s anything the English don’t like it’s swearing in front of children, never mind at children. But we don’t want to get involved. We just want to the voice to stop. And we hope to do that by looking whilst pretending we’re not looking.

“I don’t think he appreciates just how hard  it’s actually raining,” my sister whispers. “That poor boy.”

The trip had been a present for my sister – 39, but a Potterphile since the first book – and for SP’s 8-year-old sister, Amy, who was just getting into the books. I’d debated long and hard about taking SP too, but at 4 he qualified for a free ticket, so we played it by his mood on the day. 

It’s a lose-lose situation though when it comes to days out with a combination of neurotypical and ASD kids. You don’t want other children to miss out, but feel guilty if you leave the autistic child at home (even if that’s where they’re happiest). But take them too and you’re on tenterhooks all day, constantly a hair’s breath from a public meltdown.

  
Last year’s Fairy Fair was a case in point. Yep, that was fun!

And so it had almost been at Harry Potter. During the film clips at the start of the tour SP clamped his hands to his ears. As we left the Great Hall he wanted to go home…until he discovered the green screen flying motorbike. 

  
We spent a long time watching that bike revolve. And then another long time watching kids cast spells. (Twice we queued up to cast spells too before deciding not to.) And then back to the motorbike and then he discovered touchscreen carrot-chopping in the Burrow.

  
The day was deemed a success.

After the backlot though, SP was done. “Go home now.” Not even the buttons to press in the special effects department could distract him. “Go home NOW!”

Amy and my sister were lagging behind, wanting to soak up everything. The animatronics failed to engage him. “GO HOME NOW! GO HOME NOW!”

We were getting looks. The same we’re-not-looking looks that the soaked boy’s family had got. A realisation: as far as other people were concerned, we were the same as them. We were the sort of family that you notice…and not in a good way.

I tried to keep moving, slowly enough for Amy and my sister to not feel cheated, quickly enough to keep SP convinced that we were indeed going home. A member of staff started talking to us about Neville Longbottom’s prosthetic teeth, because Matthew Harris had come out of puberty just that bit too good-looking for the role of geeky pupil. I held my breath throughout the conversation, as though my lung function would stop SP from going into a meltdown.

At the model of the castle SP made a break for it as I tried to take a picture. More looks.

We gave the shop a miss, SP and I, and instead installed ourselves at the base of the foyer’s Christmas tree.

  
As we sat, SP fell asleep in my arms.

And there they were, out of all the thousands of people at the studios at the moment, the family from the café pulled up next to me. The older daughter was sullen, despite a huge carrier bag of goodies. The boy, now drier, straddled a Nimbus 2000 as his mum minutely directed a photo. The dad still moaned that the shot wasn’t right.

You can’t help but notice some families, and not in a good way. And I’m going to have to be aware that, thanks to SP, we are going to be one of them wherever we go.

This weekend we’re going to Disneyland Paris. For five days! Never mind Big Thunder Mountain – we’re going to experience far greater emotional roller coasters, I fear. Is it normal to feel anxious before a holiday? And if not normally normal, then normal within the realms of autism? 

I’m braced to do certain things time again, in the same order each day. I’m prepared for meltdowns and a pace set by SP. I’ve plans to overstock on familiar snacks, to have iPads and bubbles at hand and to be unable to capture those heartwarming shots that Pinterest do so well.

I suspect that with the best will in the world we’re going to be noticed at times. And not in a good way. 

I just hope that when I notice other families I can do it without looking as though I’m not looking. I’ll let you know how we get on.