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.

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.