Spilt Milkshake.

A version of this was also posted on another of my blogs: https://stickyspoons.wordpress.com/2016/07/28/5-crying-over-spilt-milkshake/

This is about why we’re in the National Autistic Society’s majority.

    
The National Autistic Society are working towards a more autism-friendly high street. According to their research, 79% of autistic people feel socially isolated, as do 70% of their families. Sensory issues play a big part in the withdrawal of people with autism from an over-stimulating world – a world that becomes physically painful when you’re processing it in a way that neurotypical people find hard to understand.* But isolation comes too from the reaction of others when things go wrong. There’s no a person with autism or their family who can’t relate a catalogue of hideous/humiliating moments of public judgement, the result of which, life can go two ways: you can develop the hide of a rhino’s arse (and/or you cry a lot) or you stop going out.

*NAS is also trying to help increase this understanding and are holding a virtual reality tour around the UK this summer. I doubt it will be a pleasant experience, but really that’s the point. 

* * *

Pizza Hut. 30/05/2015.

It wasn’t a massively-ambitious plan. (Or at least not a massively ambitious plan by neurotypical standards. The planning and preparation involved in taking SP as someone with autism somewhere new is something we’re still adjusting to.) Amy fancied a trip to Pizza Hut a) because she thought her beloved teaching assistant pulled a second job there and b) their milkshakes are to die for. We hadn’t eaten. I like pizza. It was mid-afternoon on a Saturday. We piled in the car and headed on our way.
At this point we didn’t know that SP was autistic – we were only at the beginning of a long journey towards a diagnosis – but we knew he was different to most children. He was more prone to a temper tantrum than any of my other kids and could turn on a dime. 

And, to be honest, things started off ok. SP was perky and happy to be shown to our corner table. But one of his things at the time was the need to scout out a place, to trundle every inch before being satisfied with a location. Obviously, this is fine if you’re at a soft play area, but less ideal when there are people carrying hot food and drinks. Our order placed, I think the request to stay seated is what triggered the meltdown.
Tantrums are bad enough at home, but at least they’re confined to private walls where you know where’s safe and to familiar ears who understand. In public they become another beast altogether. I’d learnt enough to know though that giving him attention would only escalate things. Ignore him and he’d calm down as though nothing had happened. A couple of minutes and a win would be worth the short-term shrieking.
But then the waiter came over:
“Excuse me, but we’ve had a complaint about your son.”

I tried to explain that, yes, he was making a noise, but, if we ignored him it would stop soon enough, but if I tried to intervene it would only get worse. And it would make it worse for the next time too.
“Yes, I appreciate that, but still, it’s a complaint and it looks as though you’re not parenting.”
And thus, I had to chaperone SP from the dining area to the takeaway vestibule, leaving Amy and Eve in their seats. And because – no shit, Sherlock – moving him made the situation worse, we ended up sitting in the car, SP restrained in his car seat, whilst he calmed down (whilst I recovered from the humiliation too) leaving Amy and Eve in the restaurant supping milkshakes.
(I don’t know what we’d have done if Eve hadn’t been with us. Walked without paying, I guess – but also simultaneously destroying an afternoon for everyone.)

And he did calm down. Eventually. Although it took a lot longer than it would have done otherwise. In hindsight, it wasn’t a temper tantrum, it was a meltdown. They’re very different things. SP needed to know his environment and not being able to do that increased his anxiety to the point where he couldn’t cope. Moreover, trying to talk an autistic person out of a meltdown is a sure strategy to failure. They’re no longer in control – flooded by hormones, sights, sounds and sensations. Bending over them, talking to them, even if you’re trying to soothe, just adds to the cacophony, when what they need is space and time. Demonstrably parenting for the benefit of those in proximity to a meltdown is the very worst thing to do. But it’s what autism parents feel they should do to stop the tuts and stares, the comments and the requests to leave. 

And I get it – I really do. It’s not pleasant to share an environment with a screaming, flailing child. I know because I live with the assaults day in, day out. If it’s irritating and unpleasant for a few minutes, I want to tell those who look with such disgust that we’ve intruded on their little world with our shrill, irritating one, imagine it as something you have to live with. Imagine having to be mindful of every possible trigger, ready to de-escalate before the storm breaks.
And imagine what it must be like to live with a red mist that can overwhelm you. Being unable to express rationally all that’s going on in your head and what needs to change to make it better! Imagine never being able to get away from that. 
And imagine knowing that you’re unwelcomed by society for reaching that point. 
Is it any wonder that we retreat into our private worlds where things are comfortable and people understand? Is it any wonder that the majority of us affected by autism feel socially isolated?
We went back and joined Eve and Amy for our food. I let SP case the joint, hoping to catch a sheepish glance from the complainant, envisaging having a temper tantrum of my own right up in their face. Yes, I’d have got barred, but I haven’t been to a Pizza Hut since, no matter how delicious their milkshakes.
  
On Instagram it looked as though we’d had a lovely time, but it affected my confidence in handling public situations and was the start of a reticence towards social situations. But I’m learning the triggers better and pack up resources to keep SP sated. We eat fast! We’ve found places where SP is happy to eat. And in those places we’re regular faces. People with autism like the familiar. Win them over and you’ve got a brand-loyal customer second-to-none. Make them feel uncomfortable and you won’t see them or their families for dust. The failing high street might do well to remember that.

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Shopping with Mrs Adelman

SP, by and large, isn’t a fan on shopping. I, by and large, am not a fan of buying stuff online, paying for postage and having to wait in for deliveries. It means that, by and large, if I want to buy stuff I have to cram it into my lunch break (if I get one…and even then I’m so consumed by the need for food I forget what I needed to buy) or I have to sneak out of the house when there’s someone else around to keep an eye on him as he stays glued to his iPad. It’s not ideal.

There is one shop that SP likes: the large out-of-town Sainsbury’s. Not that we get any practical shopping done. Instead we watch the bank of TVs with its endless loop of promo videos that you’d think we didn’t have a telly in the house. We’ve been known to stand there (and by ‘stand’ I really mean repeatedly run up and down the length of the display) for up to an hour. To lure him away I have to tempt him with the search for chocolate buttons. Except that he’s learnt that the chocolate buttons are in aisle 13, so anything for dinner has to be grabbed as we dash by the point of sale ends between the TVs and the confectionary.

Essentially from a monolithic supermarket I’m lucky if I get to leave with pizza. Maybe I should give more thought to Internet shopping.

Sometimes though a shopping trip is unavoidable – the other week I had to buy school uniform and a new car seat for SP as his sensory issues meant that he’d slip his shoulder restraints each and every time rather than being confined. To soften the deal I said I’d take him to the farm (to bounce on their trampolines as much as look at the animals).

It didn’t work out like that.

In the uniform shop SP was very good, pointing stuff out and saying “thank you” to everything. I breathed a sigh of relief. He declared he wanted to go to KFC. I agreed – it was lunchtime (I was hoping for sandwiches and cake in the farm café, but eating dead chicken before we saw live chickens was do-able). SP enthusiastically waved goodbye to everyone in the shop – staff and customers alike – and we headed on our way.

It was when we went to buy the car seat that things got tricky. SP immediately launched himself up the main aisle, chanting “24-hour shopping, 24-hour shopping” on repeat. Trying to make an informed purchasing decision whilst simultaneously ensuring he didn’t then make a beeline for the automatic doors, wasn’t easy. I feared we’d actually end up shopping for 24 hours! As soon as it became clear that the car seat I wanted wasn’t in stock (essentially because a shop actually holding anything more than a bunch of display products is so passé, apparently) I ordered it online… from my phone…whilst in the middle of the shop. (Don’t c’ha  just love the 21st century? Well, actually, when it’s like that – no.) I regretted not doing the whole thing from the comfort of my own house…but not as much as I was about to!

Technically we were now free to go to the farm at least. Except, no.

  
Do you remember the episode of Friends when Phoebe became possessed with the spirit of elderly client, Mrs Adelman and she wouldn’t leave until she’d “seen everything”? Well, it seemed that SP had been similarly possessed! From being shop-intolerant, he decided I was absolutely vital that we looked extensively at every shop along the strip. Some of them twice, and in the case of Argos, three times!!! (It’s Argos’s fault for having a demo video for Lego Dimensions playing, with a console with big shiny red interactive buttons. May SP never ever have any responsibilty for national security – we’d all be a gonner by the end of his induction tour!)

We walked a total of more than 12,000 steps – nearly 6 miles – backwards and forwards, backwards and forwards.

We looked at games consoles, toiletries, sandwich fillings and muffins, three-piece sofa suites, mobile phones and fridges, plants, garden furniture, water features and sheds. 

  
It was only when he’d also got halfway around Tesco that he’d declared he’d “done.” Typically his legs then immediately stopped working and I had to carry him back to the car.

The afternoon had gone and we’d missed the chance to go to the farm. Not that SP cared – as far as he was concerned he’d had a brilliant day. So much so he wanted to repeat the experience the following week! Although SP is now a shopaholic, it’s only on his terms and so I’ve had to resort to sneaking out of the house if I want to actually get stuff done! With the summer break now underway, unless I want to spend my days off trawling after SP until Security throws us out for suspicious activity, I really must sort out an online account. Mrs Adelman can go and haunt somebody else. I’m done!

Beige

Like a lot of those on the spectrum, SP has a limited diet of very specific set of accepted foods.

Most of these are beige.

Chips, crisps, cheese sandwiches with white bread, white Mr Whippy ice cream,bananas (sometimes).

Cucumbers are ok and ham is sometimes acceptable in a sandwich.  Innocent Fruit Tubes are devoured in multiples, although the problem there is that I can only buy them in KFC – I must be the only person who visits with the primary intent of buying squashed fruit!

I must also be the only person who puts slices of cake into a packed lunchbox just to conform to expectation, knowing full well it’ll come back uneaten.

Cadbury’s Giant Chocolate Buttons are all that sustains him some days. Even then the ones that are the wrong shape get unceremoniously turfed out. If Cadbury’s are ever looking for a particularly pernickety Quality Controller, SP’s your boy!

At nursery he will eat apples and drink milk, but not at home. Go figure.

I wonder what happened to the baby who used to be so willing to try everything. One thing at a time gradually dropped from his palate if they weren’t eaten frequently enough. Shepherd’s pie, cheese risotto, fish fingers, corned beef hash, scrambled eggs with ketchup, yogurts…foods went from ‘delicious’ to ‘don’t go there’ without rhyme or reason,

Luckily his tastebuds are seemingly hyposensitive and he doesn’t pick up on the vitamin supplement that I add to his juice. His hang ups seem to come purely from how a food looks.

Unfortunately the usual tactics of encouragement don’t work. It doesn’t matter what everyone else is eating, if it’s green/meaty/wet/not beige it’s not leaving the plate. Arranging things into cutesy displays gets nothing more than a look of disinterest. Hiding vegetable is tomato sauce won’t work if tomato sauce is rejected on the grounds of it already being too wet and too red. 

We try a relaxed, ASD-friendly approach of gradual introduction and still he sticks to his sandwich and cucumber guns.

But then sometimes there’s a glimmer. This evening, having watched a character eating a bowl of spaghetti on a YouTube video, SP requested spaghetti for himself! Never mind that it was bedtime, I skipped my way to the kitchen to boil the pasta before he changed his mind.
  
And he ate it! Not all of it, but enough to have the Husband and I high-fiving! Ok, it’s another beige food, and it might not be on his list tomorrow, but for today it’s at least another food.

Sometimes it’s the little things that make us happy, even if they’re beige.

The Trouble With Transitions

SP has only 8 more sessions at nursery before he leaves. He’s seemingly unaware that this is the case. Meanwhile I’m the one whose really not coping. Every time I remember this means we’re losing our precious Mrs H my heart breaks. It takes a lot to be considered part of SP’s gang and she’s right at the middle of it. She lifts him up and calms him down. Through trial and error she’s worked out how to persuade him to join in, even if the tactic only works for that session. She accepts him, edges and all, and sees no need to shave his corners. And in 8 sessions’ time she won’t be part of his gang any more.

Instead we’ll be taking a step of uncertainty. His new school aren’t sure they’ll be able to meet his needs long term; the council aren’t sure if they want to help (or at least our application for an ECH plan is sitting in a pile on somebody’s desk); I’m not sure I’ve made the right choice. Anxiety at the next step up is normal. But whereas with my other children the hope that it’ll all work out in the end seemed to be good enough, with SP the fear is that making the wrong choice will impact negatively for a long, long time. It’s a horrible responsibilty, especially as there’s no one to say ‘this is the right way’ and even if they suggest a different way to normal, the places and the resources aren’t there.

SP himself sways between utter excitement at going to big school and utter determination that he’s not going. (Although he lives in the moment with no awareness of time, so as long as he’s excited when he’s at the school we don’t have to particularly worry about his lack of acceptance when he’s not there.) 

  
Both SP and his new teachers survived his first taster session at least.

So, despite SP having recognised issues with transitions, it would appear that he’s not the only one!

Maybe I need his coping strategies. 

In which case, can I please have a visual timetable for how the whole move to school is going to work out? One with velcroed pictures I can pull off the board when we’ve crossed a milestone. ‘Say goodbye to Mrs H and nursery’: tick. ‘Have 6 weeks of school denial during the summer holidays’: tick. ‘Agree to wear the school uniform, including the dreaded clip-on tie’: tick. ‘Day 1, make it from 8.30am to 3.05pm without the teacher reaching for a stash of gin’: tick. And so on and so forth until we reach ‘Pass A levels’: tick.

Can I have someone squish me with a giant cushion when I feels like it’s too much? Can they rock me and stroke my hair and reassure me that it will all be fine?

Can I wear noise-cancelling headphones and retreat to a room with mesmerising lights when it all gets too much? Or just curl in a ball with my hands over my ears when I don’t like the situation? Can I scream when things don’t go as I’d like, just to release the tension and make my feelings known?

SP has trouble with transitions because he lacks the theory of mind to see the possibilities. He’s resistant to change because he can’t predict that change as a possibility. He can’t imagine what it will lead to or what demands will be made of him, so he sticks to what he knows.

I have trouble with transitions because I can see all of the possibilities. I can see that everything might be fine, but I can also see that it very well might not be (and can construe the probability that at least in part it won’t be all ok from evidence from others before me). I’m resistant to change because it’s more comforting to stick with what we know. I dislike the lack of certainty that SP’s demands will be met.

  
For now I’ll stick to another of SP’s tactics, that of ‘First’ and ‘Then’. First I’ll brace myself to let go of Mrs H. It won’t be pretty or dignified. But I’ll have to rip the bond like a sticking plaster. I’ll try to bide the advice of Dr Seuss: ‘Don’t cry because it’s over; smile because it happened.’ Easier said than done. Long-term I will, but by the end of term, it’s unlikely. Then I’ll prepare him (and me!) for school. Which will more than likely involve the production of velcroed pictures to help ease the transitions. I’m still not sure how we’re going to get him to wear that clip-on tie though.

What to do When Your Child is Categorised as a ‘Level 3 Harm Risk’

What to do when you’re told that, according to your child’s pupil-specific risk assessment, he is a ‘level 3 harm risk’? You cry. Or at least I did. It’s not easy being told that your pint-sized, scrawny, son is a risk to himself and others. A risk of physical harm and harm to his/their education.

  
And then you take a deep breath. Because, actually they’re not wrong. 99% of the time he’s bonnie and compliant and an utter sweetheart. But we’re always braced for that 1%, predicting when it might be triggered and poised to quell the fire that burns when his world tips on its axis. That’s exactly what that Level 3 represents: where a risk of harm is more likely to happen again. And you feel guilt for all of those caught in his path: the teachers whose days are made harder because they too have to be ready to pounce; the other children who are too young to understand but who’ve learnt it’s best to give him a wide berth. Your heart breaks for the way it must feel to be so caught up that you can’t cope, for the ways someone so little has had to learn to manage his response to a bewildering world and all the challenges ahead.

And then you take reassurance where you can get it. “At least he’s not a Level 4 risk: ‘The risk of harm is persistent and constant.’ ” What must that be to live with? How drainingly exhausting? How lucky we really are to have that 99%! And the relief that his Level 3 is only applicable to the probability of harm, not the seriousness of it. 

I won’t deny that it stings to be told your child is a risk. ‘Normal’ children don’t come with personal risk assessments. You don’t find yourself holding your breath around the neurotypical kids. And although, more often than not, when your kid’s being quirky you can hold your head up high and show him that it’s ok to be exactly everything that he is, when it’s having a demonstrable, quantifiable negative effect then it’s less easy to accept as ok.

But with the numbers comes a determination to make things better. To make changes to his environment so that he’s not anxious or overwhelmed, so that he has a chance for a break from the world. To notice the early warning signs so that he doesn’t reach the point of lashing out. To have strategies, both for us as his carers and for him to learn himself, for when it does go wrong. His new school in September has plans to make learning an outdoors affair to better suit the kids with special needs. They’re creating a sensory room out of a cupboard for chill out time. His nursery have had training in how to cope as have we as parents. Information is being cascaded from those who’ve built a bond with him and learnt his quirks to those who are going to be new to him.

  
Yes, it’s harsh. And, yes, it seems incompatible with the bright, happy version of him. But if it helps for those times when things flip at a loud noise or an invasion of space or a change to expectation, then at least no one can say they weren’t forewarned.

And it saves us from having to dress him in a hazard t-shirt, I suppose.

  

Whilst You Were Sleeping

SP has a big day today: his first taster session at primary school. Even if he is currently adamant that he’s not going. Damn and blast not getting a laptop/printer/laminator/Velcro organised in time to create a visual timetable to reinforce in his mind the looming prospect of potentially-two-hours-of-your-life-kicking-and-screaming-at-a-new-environment. (Hey ho! That two hours I’ll be spending in the gym to stop myself from fretting.)

I’m not sure how early on other kids pass judgement over their new classmates…or, more likely, parents reconcile who their child can/can’t be friends with, but I decided that it’s possibly a good idea to try and resemble ‘normal’ as much as possible. This may, of course, be immediately undone with a swift bout of ear-piercing screaming, which will mark his card as the child-least-likely-to-get-a-party-invite, but, you know we can try. Plus, there’s every chance SP will love it.

Best then to attempt to send him in looking a little less feral than his naturally-inclined state.

Besides which, he also has hair that could only be referred to as Boris Johnson-esque. And if there’s one person you don’t want to be resembling right now it’s a National Liar with a dodgy barnet!

  
It was time to tackle the hair!

A friend (of whom I am deeply jealous) made the most of an early weekend wake-up (a Whaaaatt?!?!) to get her sons’ hair tonsorially sorted. Both of her boys looked angelically cute. The last time I took SP to the barber it ended in a scene so epically loud and messy it resembled The Exorcist had it been set during the makeover round of America’s Next Top Model. It’s amazing nobody lost a body part!

 This, except more snot, flailing and melted chocolate buttons!

Needless to say, from then on preventing SP from resembling Cousin Itt has been an at-home DIY job. Moreover, when the drive-by snippings of Scissor Ninja failed (immerse in iPad, sneak up for a random snipping sand retreat before the tendril hits the floor) I took to nocturnal trimmings.

That’s right – I cut it whilst he’s asleep.

Which is fair to say is not ideal. Before now, Husband has accused me of giving SP a cut not too dissimilar from Al Pacino in Dog Day Afternoon. On another occasion he looked more like the Armish Ishmail in Kingpin. Shortly before our Disneyland trip I gave him a do that looked like I’d attacked his locks with hedge trimmers!

  

It says something though when battling a sweaty head, the inability to see both sides of the head at the same time and gravity (it’s always hard to judge the (relative) success of a trim until the morning when hair falls as its want to do, rather than at a 90 degree angle) is preferable to tackling the issue head on, so to speak. And that’s without consideration of the fact that I’m doing it whilst in the dark, juggling the torch on my phone along with the scissors so that I can see just enough without waking him up.
This morning I was able to judge my handiwork. Let’s just say I’ve had to reconcile myself to the fact I’m never going to have a son with the sort of Little Boy hair you see on Pinterest. Symmetry is so overrated. Well, at least it is when the alternative is the trauma of a barber’s chair.

  

I know that I really should face up to the issue of a proper hairdresser visit. The National Autistic Society has some great advice on getting a haircut done without too much trauma. But also, I feel, I only have the energy for so many battles.

 If anyone can point me in the direction of a barber willing to do this though, that’d be great. Can’t there a be a register of ASD-friendly hairdressers, not to mention doctors, dentists, shoe-shop assistants? 
So, for now, with or without the screaming it’s unlikely we’re going to fully pull off ‘normal family’. Ah, if they can’t like us as we are we wouldn’t want a party invite anyway.

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.

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.