A Cow Amongst Sheep

“So, SP, do you want to do some work now?”

“No.”

Thus went school yesterday.

But the teaching assistant did ask…and SP is never anything but honest.

He’s also not one to be swayed but what others are doing. It’s not just that he’s a black sheep amongst the class flock; he’s a  cow!

  
At the moment it’s cute and endearing, but I’m not really how long this will hold sway. An obstinate 4-year-old is one thing; but a defiant 15-year-old? Undoubtedly by some point he’ll be less likely to get his own way and get into trouble.

In which case I can’t help but feel that mainstream schooling isn’t in his best interests long-term. Can a system that likes things done in a particular way meet the needs of someone so intent to do it his own way? But the nearest ASD-specific schools are so far away. I’m not sure what’s more likely to change: SP or the local authority’s realisation that there’s a need for accessible support and tailored education. Both are the definition of stubborn.

But when SP wants to do it, it’s all there. He’s taken in everything taught whilst he’s shielded his ears on the carpet; he knows how to form letters, even if he refuses to pick up a goddamn pencil; in passing conversation he’ll thrown in some maths.

After piling up the daily homework sheets for 3 weeks, SP finally decided he wanted to tackle them all in one hit. Ok, he has no interest in picking up a pencil, but his letter formation (“round the face, down the hair and give her a curl” is how they learn to write ‘g’ these days apparently) and phonics sounds were spot on. He rattled through them. And again. And again and again and again. When he’d done he gathered the sheets and threw them in the air. “Surprise!”

You’re not kidding! Too right I’m surprised.

When I showed a video of this to his class teacher she laughed. He mimicked her perfectly. “He’s happy to sit during the sessions but he won’t speak. But he’s obviously taking it all in.”

I think they were also surprised that he actually joined in with everything in PE today, rather than sticking to whichever piece of apparatus he likes the most. So much so, he’s got Star of the Week. (Again! And he’s only been there for five weeks!

It’s been a good week for SP. I don’t expect him to comply with everything the same way an NT child would: he doesn’t have that need to please others (which is by turns infuriating and refreshing). But thankfully, right now, his school are thinking along the same lines. Which is just as well as SP getting along, albeit in his own way, makes for a far happier time for him and thus a far easier time for everyone else. And that’s what I hope for most: for him to be happy going about things in his own way.

If only society would see that the cows are just as good as the sheep. Things would be a lot happier and easier all round.

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Power Nap

Dear Apple

I would like to offer you the opportunity of hiring out my son for the purpose of technological research. Given that your products fail to sustain a day of intensive autism-friendly usage, I think it would be in your best interests to research whatever power source allows my son to nap in the back of the car for 5 minutes (literally five minutes, with me urging him to stay awake, but his head lolling anyway) and wake as though he’s had a full night’s sleep. Imagine, a battery charge from 0% to 100% that doesn’t drain any quicker than a normal recharge!

I’m pretty sure, with enough research, you could harness that ability for the good of your products. Which would be a major result because have you experienced the autistic fallout of an expired battery life?!?! Let’s just say, it isn’t pretty!

All I request in return is the chance to recharge my own batteries. Something with marshmallow soft pillows, comforting tog rating and a king-size mattress all to myself. Eight hours undisturbed would be amazing!

It’s a win all round, I feel. I look forward to your reply.

Yours sincerely

GSM

Holding Back the Tide

The 12th century and King Canute heads down to the shore with his courtiers. His throne having been brought to the shoreline, he demands that the tide holds back and doesn’t wet his feet. The water of course comes in and soaks them all.

  
Historians claim that if this happened, it was for Canute to prove that even the power of kings is worthless against the elements. 

But maybe the historians are wrong. Maybe Canute thought the tide could be stopped from coming in at his will. Because maybe Canute was autistic.

Because nobody seems to be so adamant to demand the impossible as SP. Time and tide wait for no man, although SP would argue that both are static to whatever he perceives them to be.

“Turn time backwards!” is a common demand in our household. If only! I’d turn it back to the few hours when SP slept undisturbed and catch up on some sleep!!!

And considering the propensity of people on the autism spectrum working in Silicon Valley, you’d have thought Apple would have had the consideration to make products with battery lives that out-sustain an ASD obsession! I will congratulate Apple, however, on the durability of their products when literally flying across the room in frustration at the appearance of the power off buffer.

But that’s not all. I’m not sure how SP expects tech products to re-charge without connection to a power source either. Power packs and cables are NOT acceptable to SP’s mind…but he still expects them to be back to working order without intervention.

Then there’s the battle of will vs lack of Wi-fi. He has absolutely no comprehension of why he can’t watch his favourite YouTube videos anywhere and everywhere. Or why it cuts out at home. To be fair, I don’t understand that either and find it equally frustrating, but I fall short of flinging myself to the floor in a rage. 

But then, when YouTube does work there’s the challenge of making him comprehend why an app advertised in 2011 is no longer available. Or why a book can’t just appear in our house because he’s seen it online. Or why we can’t go to Thomas Land on a whim at bedtime on a Sunday, least of all because the Thomas Land he’s seen is in New Hampshire! 

Not that is ever Sumday at bedtime. In SP’s mind – even though he knows the days of the week, months of the year and can read a digital clock – it is always half past one on a Monday. And it is always January. Okaaaay.

Harder to live with than a perpetual Monday-in-January calendar was the 30-mile whine because I’d turned around in the road to avoid traffic, thus not taking our usual route out of town. SP was lucky I didn’t leave him on the side of the roadside as he upped his game in terms of decibels the longer I refused to turn back on myself.

We’ve even had an actual Canute moment at the beach when SP wasn’t content to paddle in the shallows, but pointed out to the horizon. “That way! That way!” he yelled as I hauled him back to the shore, both of our rolled-up trousers soaked through. Drowning is not an option when there’s the edge of the world to be touched! I am the most unreaso able parent ever!

All of this is part and parcel of the lack of theory of mind that makes the world such a difficult place for SP to comprehend. Technology should always work because he sees no reason why it shouldn’t. If something exists online then surely it can exist in his world. And why would it ever need to be anything other than half-past one on a Monday in January?

I wonder if Canute threw himself into a screaming, wailing mess as the water soaked his robes and lapped around his throne? I wonder if he threw his crown into the waves in a pique of frustration because the water hadn’t done his bidding?

Our own Canute certainly doesn’t handle such frustrations at all well. Good luck to his teachers next week as he starts school and has to settle into a routine and set of demands not of his choosing! The tides of the education system are about to rise and I’m not sure SP’s going to like getting his feet wet.

With or Without You

I’m sat writing this on the platform of Downham Market station. SP and I are stuck here for the next hour. Downham Market station isn’t the sort of place you want to be stuck at for an hour, but neither is a train carriage full of people when SP is in the middle of a tantrum. So, to save the eardrums of our fellow passengers and to teach SP that there are repercussions for behaving like a brat, here we are.

  
And he was being a brat. There’s a difference between meltdown and tantrum, although both are an outcome of his autism and are both are ear-splittingly loud and unpleasant to be around. Today’s outburst was the result of a trip on the train. We’d done and we’re heading for home, but SP decided he wanted to go the other direction to London (just as he’d done with his grandad the time before). Teatime is no time to be heading away from home on an hour-long journey with another hour and 40 minutes back. I put my foot down and said no. He conceded, got on the train…and erupted as it headed in the direction of home.

And thus we are sat on a desolate station, strong breeze whipping off the Fens, waiting for the hourly service to finish the last 14 miles of our journey home. An hourly service that’s just announced a 20- minute delay! We could have been home by now.

Luckily I have cookie dough bites (thanks M&S – your service to autism knows no bounds!) and SP has a bag of snacks to bide the time. It’s sunny. To be fair, I’ve sat here in a lot worse circumstances (thanks to a rail obsession in the midst of winter).

But it’s proof of the difficulties dealing with the summer holidays. I want the holidays to be nice, full of fresh air and experiences. Thus far SP has enjoyed the grounds of a stately home, the thrills of a theme park, splashing in the sea and flying through the air at a trampoline park.

  
And SP has truly enjoyed himself doing those things. Away from his iPad he’s been chatty and smiley and happy. He’s run, walked, jumped and played.

But no day has been without incident. At the theme park he screamed as we had to leave as it was closing. At the seaside he didn’t want to leave the arcades, even though we’d stood and watched the PacMan demo for two hours and spent a tenner repeatedly playing air hockey. Also he wanted to paddle out to the horizon.he didn’t like being told the sea was too deep. At the stately home he’d taken instant umbrage at the hall itself (something disagreed with his sensory processing) and we ended up in a pool of tears and screaming outside as a stern middle-class woman jabbed at SP, shrilly absconding “Discipline him! Discipline him!” 

  
At the trampoline park the tantrum was Amy’s – the safety video had put her off and she refused to join in. SP meanwhile bounced without care. Go figure!

Husband thinks that I’m being a perfectionist. “You have this idea of a perfect day out,” he said of the stately home trip, as though my expectations were written by Enid Blyton. “You should do things that you know he likes.” But how do you know what SP likes if we don’t try different things? We’d be sat on rural train station platforms all of the time! Hardly fair on Amy whose holidays are already dictated by SP to an extent that is greater than it should be. Fixing on what SP knows he likes would reduce our world further and further. Besides, how do you a judge the success of an outing: by the 90% enjoyment of the 10% abject hell of a meltdown? Although in the midst of the meltdown, it’s hard to be glad you stepped across the threshold of home and you vow never to go out again.

Furthermore, Husband is in no position to judge as he doesn’t join us for our trips and his days spent in charge when I’m at work result in iPad-dependent pyjama days…and then he moans that the kids are too fixated to their technology. It’s undoubtedly easier to stay within the confines of home, but it surely isn’t better?

Sometimes though, it’s not. Sometimes it’s wisest to tag team SP, with either myself or Husband staying at home with him and the other going out with Amy alone. It feels wrong, but also for the best. With SP a day at the Science Museum was a day chasing him around the exhibits, unable to pause to enjoy anything. Without him, Amy and I got to enjoy the V&A and more during a day in London. Sometimes for sanity’s sake it has to be done.

But I’ll keep trying. I’ll keep trying to figure out where might work for us. I’ll always ensure we’ve got supplies to sustain everyone when our plans go wrong. I’ll try to develop a thick skin for those meltdowns, because I’m never going to premeditate them all. Not until I can change the clocks or make the tide shallow enough to paddle out to the horizon.

And I’m going to keep trying to focus on the 90% rather than the meltdown 10%, because then I’ll have the energy to keep going and not let our world grown claustrophobically small. 

Even if it means spending an hour and twenty minutes at Downham Market station.

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.

  

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!