Decanting

‘Red crisps’: one of SP’s major food groups, a limited diet being typical for a child with autism.

Also typical for a child with autism, those red crisps for SP specifically have to be Walkers Ready Salted variety, specifically in THIS style of packet:

  
Unfortunately at the minute, Walkers are running a competition, so their packets look like this:

  
Please tell me I’m not the first parent to decant crisps from the rejected amended packet to an old packet that I luckily hadn’t got round to putting in the bin (although I suspect if need be I would have plucked an empty packet from the waste paper basket).

Mercifully this time round the re-design is temporary, but I’ll be guarding the old packet with my life until normal packaging resumes. So if you see a woman losing her shit over a binned crisp packet in the next couple of months, do say hi.

Wobble

The specialist health visitor came for a home visit on Tuesday.

“You seem a bit wobbly today,” she said.

And so I burst into tears and cried at her for the best part of an hour.

It wasn’t meant to be that way. Her visit was to observe and record a play strategy with SP to share as part of the Earlybird parenting course I’m on. The previous session we’d learnt the importance of planning play so that our kids learn how to interact socially through games (as opposed to a neuro-typical child who’ll use social interaction to learn games). I’d planned various options. 

I hadn’t planned on crying.

But I also hadn’t planned on SP attaching himself to a) the sofa and b) his iPad and refusing to participate. Actually, I had, which is why I had an alphabet jigsaw staged in his wigwam upstairs, thinking if I could lure him out of the living room he’d play. It’s why I had his favourite book to hand in case he refused to leave the sofa. But Plan A was to play a pairs game and he was having none of it. But neither was he having Plan B. Nor Plan C. I hadn’t planned on him refusing all of my plans.

I became very aware that I was coming across as a psycho pushy mum, à la The A Word, desperate to prove that my son could be normal despite his autism.

Yes, I wobbled.

But the lack of cooperation was the tip of the iceberg. The same day I’d had the confirmation email from the local authority with regards to him starting school in September. There it had been, in black and white, SP was to leave the security of nursery to start mainstream school.

I felt very wobbly.

At the time of the application for a place autism was only a suggestion. We were amid the process, but the behavioural issues and development delays were only coming to light. I felt I couldn’t tick the SEN box and that mainstream education was a reasonable choice.

Months down the line, with a definite diagnosis and an increased realisation of SP’s differences, I wasn’t so sure. Still in nappies, with no interest in holding a pencil or befriending other children, SP seems miles away from being ready. How will he possibly cope with all the transitions that make up a school day? What will happen when he refuses to change his shoes for PE? How will he feel having to adjust to a new setting with new kids and new teachers? Who will look out for him when Mrs H isn’t there?

Maybe I should have requested a place at a special needs school, where they’d teach him to do his buttons up and have resources in place to accommodate his differences. A place where he wouldn’t be different. Where he wouldn’t be the odd kid.

Maybe I should just hire Mrs H to teach him forever! If only that was an option!

But it’s not, so instead I wobbled and dissolved into a pool of tears at the thought.(And, if I’m honest, that shouldn’t have been written in the past tense and I still can’t help but well up at the thought as I type.)

I also felt like a berk for crying so much. For making her think that everything else is a mask. For revealing myself to be a psycho mum.

And I feel guilty that I feel sad for SP being different. I shouldn’t feel sad because I love him so much, despite and because of his differences. But I don’t feel sad because of the autism itself, I feel sad for the additional struggles he’ll face because of those differences. 

And I feel increased pressure to get things right for him because the ramifications of messing up are increased. But I’m only used to whinging it, I’m unprepared and don’t know how to not mess it up.

It took until Friday to find some stability. Waiting for Amy in the school playground the reception teacher called me over. “I hear we’ve got SP in September,” she said brightly.

“Yeah, good luck with that!”

It took the conversation that followed to remind me of the reasons for selecting the school in the first place. Mrs D is an amazing teacher, an ideal introduction to primary education. Yes, there will be some big challenges that SP will have to face, but she is an ideal guide. The special needs coordinator is also warm and caring, experienced and on the ball when it comes to  dealing with kids who are different (and their parents!). Even if I’ve made the wrong choice SP will still be in good hands in September.

It gives me five months to grow a backbone too, so that I can convincingly assure him that everything will be ok. I can’t say I’ll be able to hold back the tears, but I plan on being less wobbly. Let’s hope this plan works!

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.