Maybe in a Month of Mondays

*Editorial Disclaimer* – June’s one and only post (completed in July) is being published in (nearly) first draft form »shock horror!« for two reasons: 1) because if I write and redraft the way I usually do then nothing will get published either this month or next – or the one after that – and 2) because the motivation behind this piece has left me with a weird urge to purge. So I’m going to write like I write for Facebook – macro-micro-blogging – – – or something.

An online support group I regularly frequent were recently debating the overspill usage of the word “meltdown” into common parental parlance. I don’t think I’m breaking anyone’s confidence by disclosing that. In the SEND community, many of us can get ever so slightly touchy about language – and with very good reason – given that the statutory difference between “should” and “must” can and does make or break our children.

The Tribunal does not concern itself with nuances of language,  Mrs S…

Pardon me? That is exactly what the Tribunal ought to be concerning itself with. That is, after all, why we are all here – to secure a watertight, future-proof legal document fit for the purposes of protecting a vulnerable child from the state-sanctioned vultures…

I can get very touchy about language and I’m not afraid to call people out on it, much to the chagrin of a woman on Spotted who expected nothing short of canonistaion for her patronising public (Facebook) showing of social conscience:

Her: Yesterday I saw a woman with her autistic son who was having a bit of a meltdown due to a sensory overload, the poor little boy was throwing himself on the floor and hitting himself, screaming and crying. His mother was obviously getting stressed out and was on the verge of tears trying to calm him down. I felt absolutely awful for his poor mother who was apologising for her son’s behaviour to an old lady who was staring and shaking her head at him! Why should this poor woman have to apologise for her son’s behaviour? Why are people so quick to judge a child that is having a tantrum? Automatically assuming they are ‘just a spoilt little brat who isn’t getting their own way’. To every mother who goes through this sort of thing on a daily basis, I really do salute you but please don’t ever apologise for your child’s behaviour, especially to rude intolerant people who probably have no idea what it’s like raising an autistic (or other disabilities) child! I admire the woman’s patience and the fact that she kept completely calm throughout the whole ‘ordeal’ and to all the parents that deal with their children who have public tantrums, I really do respect you and please know you’re not judged or looked down on by everyone.

Me:  “I got over giving a monkey’s what anyone else thinks a long time ago! 🙂 And I do feel the need to point out that a meltdown is absolutely NOT the same thing as a tantrum. Whilst I appreciate the underlying sentiment of the post, that kind of confusion over language and the reality of what the child is actually experiencing is not in the least bit helpful.”

Her: Well I do apologise for not using the correct ‘language’, what exactly would you call it then? I was trying to be nice by telling mothers with children who have regular tantrums/ meltdowns/ whatever you would like to call them simply that they are not judged by all!! The way you are trying to bring this post down is not in the slightest bit helpful either!

As far as I knew I used the correct terminology as I knew I would get someone telling me it isn’t a tantrum they’re having, it’s *insert perfect description for said experience* but hey, I’m no autism expert. You can’t please everyone! :[

The reason I mentioned tantrum was because I said ‘disabled or not’. I really do feel for parents of children who throw tantrums as well as parents of children with autism, I just tried to cover my own back so I don’t get petty comments like the one from Kerry, whether it was meant funny or not. I really sound like I’m being horrible now and I don’t want it to seem that way. :[ Well whenever there is a child having some kind of ‘episode’ I always try to give some kind of reassurance to the guardian of that child that I am not judging, neither am I an ignorant, uneducated fool by offering them a sympathetic smile or a few kind words. What actually helps you if your child is having an episode in public? I’d like to know so I can be of a little bit more help than just standing and smiling at people. Lol.

Me: “I’m not trying to bring anyone’s post down. And the language is important. A tantrum is something we can all be guilty of; it’s about throwing a hissy fit if we don’t get our own way. An autistic meltdown is something different entirely; it’s a physiological response to environmental triggers and the individual who is having the meltdown can do nothing to stop it. It was not my intention to upset anyone but the distinction is important and, as someone who advocates for a child with an ASD, I couldn’t not point out the difference. The original post opened up an important discussion and there are probably people reading this who have no experience whatsoever of autism and who genuinely think that a meltdown is nothing more than a tantrum. That is why I made the point: it was in defence of those very children whom the original post was about, not a personal attack on the person who wrote it.”

“And in all honesty, there’s very little you can do to help in that situation. The fact that you are non-judgemental about the situation is enough – and something that autism parents really do appreciate.”

Her:  Well Kerry, I am in no way shape or form personally attacking any child, disability or not. What exactly would you like me to say? And thank you to everyone else for the positive feedback on my post. There’s always one…

And I never said the child was having a tantrum, I said it was having a meltdown, something that even medical professionals refer to them as. On the NHS website it refers to these ‘episodes’ as meltdowns that the children themselves dread as well as the carer. I do apologise I am not a medical professional, just taking advice from the NHS website.

I was just about to mention the fact that I have over 1000 likes on this post so over 1000 people who agree with me. I think we may have our wires crossed slightly, it’s obviously something we both feel quite passionate about. As long as this post has done some good. 🙂 x

Me:I didn’t accuse you of attacking anyone. You wrote Why are people so quick to judge a child that is having a tantrum? And you’ve been ever so slightly rude about me more than once now. Was it actually your intention to salute parents for dealing calmly with meltdowns in public or was it really to collect ‘likes’ for being such a nice person?”

Her: Haha, not in the slightest am I wanting to collect likes, I’m not that kind of person. I simply informed everyone that not everyone is a judgemental, ignorant fool. The sentence you quoted from my original status was referring to both disabled children and non disabled children. What exactly is it you would like me to say? Or how could I have worded it better in your opinion? I would love to know.

Me: “I would simply reiterate that it is a mistake to use the words “meltdown” and “tantrum” interchangeably.”

Her: Ok well I used the word meltdown to describe the ‘episode’ the child was having, and used the word tantrum in general, to describe an ‘episode’ any child would have. I don’t really see anything wrong with that. But if you want to split hairs then please keep your comments to yourself.

Me:If you’re not interested in learning anything new from a parent who is constantly on high alert to managing a child’s environment to prevent sensory overload then you should resist passing comment about other peoples lives in a public forum – whatever your intention.”

Her:  And why is it I should resist passing comment? I am a good, well educated person with good intentions. I just hate the way you were so picky with the terminology I chose to use when describing an ‘autistic outburst’ I justified myself and you still don’t get it. I’m not being funny or anything but you are the one person who has so far even slightly disagreed with what I have to say. People who work with disabled children, mothers, fathers, carers and best friends of – they haven’t mentioned this!

Me: “Believe it or not, I didn’t come here for an argument. I was tagged in because I parent a child with an ASD. That means I have first hand experience of the type of scenario you described, but from within it, not as an onlooker. What you witnessed out shopping is barely the tip of the iceberg of many of the issues which some families face on a daily basis. As parents we battle with health and education services constantly and most people generally misunderstand what autism even is. Mislabelling a meltdown as a tantrum couldn’t possibly elicit the same reaction in you as it does in me. As I said right at the start “I appreciate the underlying sentiment of the post” but it is my duty to my child and to the autism community at large to challenge misconceptions about the underlying reasons for what appears to be challenging autistic behaviour. My comment was about language and how it illustrates public misconceptions, not about you personally. As for why no one else considered that to be important, you’d have to ask them that. I wish you well.”

She did collect over a thousand ‘likes’ for that post. Well over a thousand in fact; and a couple of hundred Facebook shares. The various well-intentioned to ill-considered responses ranged from gushing gratitude for her amazing contribution to humanity to downright disgusting ageist, sexist trolling of the old lady and her wider demographic. The ableist language scattered throughout was, I’m guessing, as lost on some of the contributors as my point was on Her.

*Note to self* – Do not be drawn into any more public, unmoderated comments threads which you would never have even seen had your Facebook friend not unwelcomely tagged you in.   Just.  Keep.  Scrolling.

So why would I choose to reproduce a post in my safe space which infuriated me so much the first time around? Well, certainly not to expose the original author’s inconsistency of thought or self-contradictory ‘carry on regardless’ attitude – because both are already out there in full view. I have an Aspie advantage when it comes to logical thought progression and any dissection of an argument this muddled would simply be unbecoming; and certainly not pretty. Or challenging. Setting aside my longstanding penchant for the passive-aggressive momentarily, I would like to invite the reader to imagine along with me the circumstances which may or may not have led to the actions of a woman and a boy out and about together drawing enough public attention that a complete stranger is now questioning the assumptions that some other complete stranger holds about them; and, somewhere along the way, restore rightful meaning to the word “meltdown”.

As the mother of an autistic child with sensory modulation disorder, my own initial assumption is that I am one of the parents the author is addressing. Any further assumptions on my part may or may not be entirely incorrect.

Her first assumptions (laid out in bold italics above) begin with the unascertained immediate presumption that the child in question is – in fact – autistic.  Is he? Maybe he isn’t. Maybe he is. Maybe his mother is. Maybe the old lady is. Or maybe not.

Maybe...

Maybe the child’s diagnosis isn’t rubber stamped yet because he’s still stuck in the system (along with countless other children) and has been for many months. He might be stuck there for many more. Years possibly. Maybe he is a potential poster boy for a syndrome so atypical that his parents and their doctor have never even heard of it yet and it won’t be until his mother stumbles across PDA in her research that the correct, if controversial, differential diagnosis will even become a possibility – but not through their local NHS trust.

Maybe it was the old lady smiling at him – a kindly expression which she couldn’t even contemplate would be perceived by a small boy as a demand he couldn’t meet – that finally tipped his delicately balanced, unsteady internal scales in the direction of fight or flight. That and the palpable tension emanating from every observable inch of his mother.

And maybe his mother wasn’t apologising for her son’s behaviour at all. Maybe she was apologising to the universe at large for what, in that moment, and many other moments like it, she perceived to be her own inadequacies. Despite her best efforts, her best just isn’t always good enough. This is her failure. In her head. She’s been at her own personal DEFCON 1 for several years now and the coil is wound so tight it’s choking her. She’d already anticipated this scene but the need for air and exactly the right sort of juice at exactly the right temperature in exactly the right sort of cup overtook her usual capacity to pre-emptively micro-manage every aspect of any given situation.

Were his ear defenders too warm from their journey in the car? Were areas of light and shadow vying for his focus? Were there too many distractions to his left or too many eyes to his right. Was he going into vestibular free-fall and needing the push of the ground against his body? Perhaps he was 36 hours ahead of an internal temperature spike or just a single hour behind on sleep due to continued late night perseverative processing on the monochromaticity of Soren Lorensen which had left him with an uneasy feeling that Mr Invisible might also be colourless. There’s no way of knowing anything for sure about Mr Invisible because not only can he never be seen but neither can you take his word for anything at all. He’s NOT imaginary; he’s really real, or so he claims. As is his invisible son, Arnold Wolf, who is nothing like Lola’s neighbour save his refusal to share ice-cream.

Wikia image
Wikia image

There is no such thing as a bit of a meltdown and it didn’t start or end in the fractions of space and time in which it was being observed; though the antecedents may be entirely unfathomable to anyone other than the boy and his mother.

Maybe she still hadn’t recovered from her own meltdown, in the truest sense of the word, two nights previous. Her doctor doubled her medication once he’d satisfied himself that she was just plain exhausted and not actually suicidal but, it was a question he had a duty to ask – given her medical history and the NICE guidelines on depression. Her husband wonders where the woman he married went to. And if she’s ever coming back.

Maybe the child’s base level anxiety has steadily increased along with the frequency of his physical and verbal tics and his heightening self-consciousness of them. They reappeared in line with some recent changes in his weekly routine. Over the course of the last month his mother has driven him along almost 300 miles of ‘school run’  for a total of 20 hours disguised ‘teaching’ time from a dedicated special needs learning support assistant – but he is still far from ready to enter the primary classroom or indeed speak to another primary-aged child at his new school – such is the severity of his social disability. So far he has no idea he is even at school. Any mention of the ‘S’ word would put an immediate halt to what is already a transition on egg shells. That is the all-too-common legacy of mainstream schooling on autistic children. Parents hanging their heads in despair when the government should hang its head in shame.

Maybe the level of control this little boy feels compelled to exert in the family home in order to redress his insecurities and paralyzing fear of all that is uncontrollable, out there, in the big wide world, is taking its toll on the family unit (the dog included) not to mention the ‘deep pressure’ impact on the physical fixtures and fittings from his self-regulatory proprioceptive drills. The lengthy legal battle his parents fought to secure this independent, out-of-County specialist placement played itself out against the backdrop of a tense academic year of home education in which the correct fully autonomous approach for a PDA child was stressfully and unnecessarily compromised by the bastards at the Education department.

And maybe the Summer heat amplified the expression of the cumulative effect.

I don’t have to imagine any of these maybes… because they’ve all been realities for myself, my son and my husband (and our dog). And when our little boy screamed and bolted in a very public place this weekend, I can assure you with absolute certainty that his panic attack was a million light years removed from anything that anyone could call a tantrum.

As for the little boy and his mum that she was talking about on Spotted on Facebook, maybe he has a diagnosis that neither she nor I have ever heard of before and which we couldn’t possibly begin to imagine the fully pervasive effects of. Maybe his Dad has moved out because the marriage couldn’t take the strain. Maybe he has siblings who are feeling the constant pressures of emotional and financial stress and have worries beyond their years. They worry about their mum because she is really tired all of the time.

Maybe…

Maybe the boy’s mother is just too busy minding her own family’s business that she has no head space left to even care about an incidental outsider’s judgement of the situation, one way or any other. But unsolicited advice from a clueless stranger to never apologise for her child’s behaviour? What??? That might just bring out the passive-aggressive in her.