WordPress sent me my “Blogging in 2013!” review earlier today. It appears I managed a mighty three posts last year.
Poor. Very poor. D minus, possibly an E. I feel myself vaguely chastened by it, so Here I Am. Responding better to the stick, not the carrot, as usual. I think I’ve exhausted every narrative technique of blowing away dust, tapping microphones, enquiring about switched-on-ness and ducking the escaping bats on previous occasions, so I’ll confine myself to hello.
How’ve you been?
It’s difficult to know how to keep this space alive. It’s the usual collection of reasons. My anonymity, which I was never particularly scrupulous about, eventually dissolved to the point of cobwebs, so I bit the bullet and shoved the blog link on Facebook a couple of years ago. Reassuringly, no-one cared. Almost no-one I know is even interested in what I put on here, as far as I can tell, but I imagine that might change if they were… mentioned, shall we say.
I am back at work, albeit in a very part-time way. Harry’s situation requires rather more circumspection when discussing than previously, especially considering the aforementioned absence of anonymity. John was never happy featuring here. My own reproductive struggles also seem unsuitable to share if – and there is – a distinct chance they could be related back to Harry via the playground.
Altogether, there seem to be a few too many tulips to render even tiptoeing a viable option.
But I do miss this place. I’ve made lifelong, close friends here.
So. I will attempt a potted history. I will then attempt to update more regularly (I appreciate I have said this before – more than once) even if it’s a pictorial collection of Cake Disasters of the Month.
Harry. What to say about Harry? He is glorious, inimical, comical, affectionate, intrepid. He is himself.
Long-time readers of this blog will remember – because I complained about it a great deal, at length, over years – the pronounced difficulties I experienced while trying to get health professionals to Take Some Notice of Harry’s quirks and motor difficulties.
The motor difficulties eventually got to the point where even the shortest-sighted of them admitted there was An Issue, and when we eventually levered a Physio/OT assessment out of the powers that be, his balance scored on the moderate/severe borderline. He currently has a weekly physio session at school, although budgets and absurd protocols have jointly ensured that that seems likely to cease soon.
The quirks were altogether harder to explain to people. I often felt extremely fortunate to have so very many people in my life for whom giving reassurance felt so nice… for them, and many of whom have had, by a wild stroke of luck, entirely normal children who have had every single one of Harry’s difficulties – worse and for longer – which weren’t actually difficulties at all, apparently.
Maybe I should ask them all what they think about climate change.
I’m not entirely clear on exactly where, during many of these conversations with family, friends and acquaintance, well-meant reassurance ended and thoughtless belittlement began to pervade. (However, I’ve obviously been able to accurately pinpoint the moment where my irritation was about to swell into incandescent fury just fine, as I’ve managed to avoid thumping anyone to date.) I dislike having my judgement questioned as much as the next parent – and, egotist that I am, probably a little more – so my cognitive bias may well have been extra-biassy on the topic. But that’s fine! as, providentially, I can logically reconcile my own gentle cognitive curves much better than other people’s ludicrous mental encrustations.
Happily for those of a nervous disposition, I can permanently scotch any lingering possibility there may have been of my running naked through Stratford. (I was reasonably confident from an early age that Harry’s Diagnoses would be forthcoming: see here and here.) I eventually shouted loud enough to be heard – by the wrong person, aktually, but the wrong person referred us to the right person. 9 months of bureaucratic sorry-we-have-no-money-at-all-don’t-you-know-the-UK-is-broke? and 2 months of Judicious Action by a Very Clever Psychology Team followed. In October we finally received a lengthy report that nailed him absolutely perfectly. Harry decoded.
As a result of the last round of DSM tinkering, Harry’s diagnosis de jure is High Functioning Autism, but, not withstanding his significant speech issues, Asperger Syndrome is the diagnosis de facto.
Other labels are in the pipeline, although it’s the understanding beneath them I want. All labels get us is the chance of Moar Input. Sensory Processing Disorder has now apparently gone the way of Asperger’s, but as Harry quite evidently has it, I wait with interest to see what they will term it on the assessment paperwork. You can’t have dyspraxia and Autistic Spectrum Disorder – in theory; diagnosing protocol generally dictates that ASD is a pervasive developmental disorder and thus an Official Trump Card, robustly ousting all other difficulties to whatever nail-parings of the Venn diagram they can cling onto – so Harry is having to get used to hearing it termed Gross & Fine Motor Difficulties instead.
Unsurprisingly, given his diagnosis, Harry is quite interested in his diagnosis.
Harry’s assessment finally shed some light on why his needs were so opaque to The Reassurers and the Deniers – and, to some extent, his Parents. Harry’s difficulties with behaviour, mobility, social issues and communication are explained easily enough by ASD; he also has capabilities which some of his peers on the spectrum do not – abilities that seem to contradict an ASD diagnosis if you were to only, for example, skim-read a few websites and come away with a one-Sheldon-Cooper-fits-all idea of Aspergers. *ahem*
Harry orientates to and reads faces well. He likes change and new things! (Except when he…doesn’t.) He is entirely compassionate and sensitive. (Except when he… isn’t.) Superficially, he gives a convincing appearance of understanding the general flow of things (for ‘understanding the flow of things’ I THINK I mean ‘theory of mind’, but tbh, I’m still grappling with the psychology underneath it.) but what we are actually seeing are extraordinarily unusual coping skills (innate, I expect, although I have tried very hard to help him Decode Stuff) coupled to a sharp intelligence. It took a clinical psychologist to ascertain to what extent Harry is frequently utterly nonplussed by Life.
We are fortunate; Harry is fortunate, albeit living within a context of frequent struggle and frustration. He has many of the positive abilities associated with his disorder, and a comparatively very mild helping indeed of the negatives. Everyday life is frequently difficult for him, and consequently for us, but our difficulties are truly minor in the special-needs scheme of things. It taxes our patience and ingenuity as parents, that’s all; finally understanding his likely mental make-up has been enormously useful to us. I really feel fortunate, I don’t just think it.
I was darkly amused to note that immediately following Harry’s diagnosis we were offered enrolment on parenting support classes, because – shocker – children with ASD are occasionally a tad tricky to parent. Ha! Where were they when Harry was 2 years old, and then 3, and still completely voiceless, and OhDearGod Being SO ImfuckingPossible because he just didn’t GET this INEXPLICABLE world full of assaulting sounds and textures and intrinsic confusion?
I wish I could have a conversation with the 30 year-old Me. But don’t we all?
Home is fine. School worries me a little, although I am fundamentally satisfied or he wouldn’t be there still. However, I feel they dropped the ball quite badly last year, although, given that Harry’s ASD is not necessarily obvious, I can’t altogether blame them for mistaking adequate academic progress with No Special Need. Harry’s intelligence means that he has made reasonable strides, but it is all shot through with difficulties. He CAN read, but lacks fluency and hates doing it. Dyslexia is a distinct possibility. Writing is utter purgatory to him, both physically and cognitively. Concentration and sitting still are… not his thing. He’s holding it all together, kind of – but we’ve lost his one-to-one Teaching Assistant now. This, I wanted to fight – when did I not? – but School, Bollock and Drop, etc. We have a new Headteacher now, but the fact remains that funded help is far easier to keep than obtain afresh – think rocking horse shit - and I’m not optimistic we’ll ever get funded help back for him. There just isn’t any goddamn money. The budgets are broker than a broken thing sat on a broken chair, and Harry just isn’t failing spectacularly enough to qualify under current Austerity Measures.
In any event, we will now await input from the Sensory OT, specialist ASD SALT, and a decent Ed Psych. And then I will fight if I think I can win. The oil tanker steams slowly onwards.
Harry started riding with the Riding for the Disabled Association in June, because it targets his weak core strength beautifully. His balance and co-ordination is always going to be an issue, but he is trotting confidently now – if not yet fluidly – and he had his first canter last month, most successfully – albeit on a horse with no legs. His instructor is a most deserving MBE for her RDA work; she has asked Harry to ride in displays at the Game Fair and Blenheim Horse Trials. This was, you might say, greatly assistive with his overall confidence – although not initially to mine, as I was obliged to man a microphone (I am just visible as a clipboard-clutching background splodge) and explain what benefits riding with the RDA was bringing to Harry.
We sent him round the ring lugging the charity bucket afterwards, and I was admittedly charmed by how many £20 notes the child managed to extract, particularly from elderly ladies of a horsey persuasion. Plus, despite possessing a baseline of fear or, at best, indifference to almost all animals, he is slowly thawing on the concept of having Pony Friends.
So. Let’s talk about MEEEEEE!
I’m happy. Apart from being 39 next month and frustrated with my weight, but you may justifiably consider that Situation Normal.
I work – and volunteer – in the local heritage sector, primarily guiding, which suits me. I can rattle on a bit, if you haven’t noticed yet. I still co-Chair our PTA, although I’m intending to hand the baton on after this year. I’m involved with my local am-dram group. I have 3 hens – at present. (I noted the other day that local poultry keepers always seem to enquire after each other’s flocks with variations on the phrase ‘How many do you have left?’)
I am learning the piano – slowly, badly and accompanied frequently by my screams of vexation at my inability to distinguish a blob on the line from the blob tucked underneath the line. Grade 1 is a shining castle of Proficiency in the far, far distance, although thanks to my mother, I acquired a shiny digital Roland for Christmas, which is an indescribable advantage. I salvaged the lovely burr wood from my former piano, before consigning the remainder to John’s tender mercies.
He took it away and burnt the bugger. The piano tuner had pronounced it a Dead Piano years ago, and he wasn’t wrong; many a time I had threatened to torch it under a blasted oak at midnight. But it DID have a life, and possibly a soul, and I saw it go with mixed feelings. I have kept with great pleasure the pieces of Black Cat cigarette cards I found as washers under the keyboard section, the gold paint as vibrant now as it was in 1917 when they last saw the light of day.
Given that I’ve been in a riding school regularly, I have started learning to ride – again, from scratch. Thanks to a pony-mad youth, I could already manage to stick on for a canter juuuust about adequately, but with the equestrianship and grace normally manifested by a large sack of spuds. My attempts are now being ruthlessly de-constructed back to the very basics, and I am discovering that it is possible to pilot a horse without the assistance of reins, stirrups, or very pointed digs in the ribs, which were my exclusive navigational tools previously. My progress is slow: I am so, so not a natural at subtle balance sports – as John once found out when we went skiing somewhere far beyond my ability, namely, a mountain exhibiting a slope greater than 5 degrees.
What else? Lemme see.
I have these
in my garage, and it’s making me Nervous. If you are a botanist and can tell me they are not false widows, then I will fervently bless you.
I did my annual Cake Thing in November. God, I do love cake. The usual people were lovely and very generous and I felt humbled and so rewarded for a few days of work, as I always do.
We lost our collie to a heart attack a couple of months ago, and have a new 8 week old puppy arriving TOMORROW, God help me. There is much cuteness about the puppy (even Harry is looking forward to her coming), much blurriness about my photos,
much controversy over Her Name, and much trepidation about the Howling At Night and All The Shit. I am exceedingly worried about All The Howling and All The Shit. Send newspaper & earplugs. My spaniel suspects nothing, poor lad.
I have about 2000 plaintive words about my Summer Of Catastrophe already written (see! Stick, not carrot!) (lucky, lucky readers!) but I’ll tuck them away for later.
You know, in case I peak too soon now I’m back. *wry face*
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