Rock, meet Hard Place.

It’s not been a cheery day, so let’s start things off with a nice little photo. John was Harry’s whipping boy Nominated Parent on Sunday, so I kicked back and relaxed by re-arranging my kitchen cupboards. This is almost everything I found that was out of date, often by an impressive 4 or 5 years. (Feel quite free to be Topper and comfort me, BTW.)

cupboard contents

We will now take a brief moment, in which everyone who has ever eaten a meal in my house, bloggers among them, can quietly disappear to throw up absolutely everything they have ever consumed.

Better?

The predominance of seeds is as a result of John’s brief fad of being a baker: we have been married 6 years in March and received a bread maker as a wedding present. Hubby got all keen and baked a number of really quite edible loaves, buying in large stocks of pumpkin, poppy and sesame seeds. Then he lost all interest; the packets have been gathering dust ever since.

Our garden birds did very nicely out of it all on Sunday, particularly as I also found a pack of lard (out of sight and mind at the top of the fridge) with a date of January 2009. Yum.

If Harry survives his childhood without falling victim to Campylobacter, E-coli or Salmonella, then he will one day look back on his formative years – these years – and form an opinion on whether I make a bad or good decision this week, and I’m wriggling uncomfortably on the pointy horns of a daycare dilemma. If you have clever advice – or amusing assvice – for me, I will give it my close attention and gratitude.

Harry currently receives Portage, a weekly home-visiting education service for pre-schoolers with additional support needs. Harry’s home visitor has undoubtedly assisted him: by following her suggestions and games, Harry has certainly come to understand the concept of taking turns, after only a handful of visits. Putting the theory into practice outside a controlled home environment has been uphill work for the lad, but she has helped improve his communication. She’s the closest thing he has to a key worker, and liaises – theoretically – with:

Physiotherapy: his Wobbles assessment is – finally – Thursday morning. I am grimly prepared to get Harry drunk and suddenly stick my foot out in front of him if he refuses to fall over for her.

Speech and Language Therapy: achingly slow progress. ‘Djess’ has, depressingly, sunk slowly back into the formless quicksand of his babble, and Harry, at 26 months and 82cms, is once again officially Wordless. He is progressing with his language; his eye contact is significantly better and his signing is coming along nicely this week – he has learnt to sign ‘hand it over now, woman’ ‘please’ – but he’s still desperately behind, and I sometimes get twisted up inside with panic and anger and OMFG I CAN’T UNDERSTAND A SINGLE DAMN THING YOU’RE BABBLING ABOUT AND I HAVE NO FUCKING IDEA WHAT YOU’RE POINTING AT AND YOU’RE LOOKING AT ME LIKE I’M THE KNOWER OF ALL THINGS OR YOUR BLOODY MOTHER OR SOMETHING  BUT YOU DON’T REALISE I SIMPLY DON’T UNDERSTAND THE FIRST THING YOU’RE SAYING AND I CAN’T HELP YOU I CAN’T HELP YOU BECAUSE IT’S ALL JUST RANDOM SOUNDS AND MY HEART IS BREAKING.

And… yeah. That’s generally the time you’ll find me howling in a corner. Even the most determinedly awful mother would find it hard to purposefully not intelligently respond to any single word her child said to her for an entire year – but that’s exactly what I’ve done, in effect. I worry about the damage to his personality this incomprehension causes; Harry doesn’t know that he isn’t intelligible.

Harry’s behaviour, unsurprisingly, is heading downhill quicker than the shares I bought for him with his child trust fund and they’re pretty damned precipitous. The baby groups we go to are beginning to fall silent when he launches into one of his Specials – particularly when I’ve just stopped him hitting another child, so he starts violently attacking himself instead. Eventually, when I’ve either restored some sort of calm, or simply clamped his raging form hard under my arm and announced our departure, one of them will carefully clear their throat, blinking and ask ‘Bad day? Is he really tired?’

Yes, all of them currently, and No, he’s just woken up.  And I’ve cried every day this week because when he headbutts me and I don’t dodge in time it really bloody hurts and my nose bleeds and I bruise and I’m tired of fighting my poor angry child and looking useless.

Cough. I was supposed to be telling you about daycare. Yes. Daycare!

Harry is no longer Cool with his 2 mornings at Local nursery. I don’t entirely blame him: last time he went, Mummy didn’t come home for 2 days. I took him Friday morning and he kicked off in such spectacular fashion at the gate that I eventually had to take him home again. John cycled past it yesterday and asked Harry if he liked the place: he shook his head. Ahhh. Bugger.

A friend in the local village runs a playgroup called, let’s say, Abacus – albeit the parents leave the children there – for children with special needs. I am only just coming around to the fact that Harry is, in fact, one of those children. The labelled, different ones. Special Needs. Statemented. Exceptional. StrugglingI know we didn’t get off the plane in Italy, but I’ve never been entirely convinced we were really making a stop in Holland, either, until – well, today, I suppose. I suppose I was thinking of us as being more… western Germany?

But we toddled along this morning, as it was a friend and she’d invited us to come take a look. (Harry promptly lost his mind with anxiety as soon as he saw it was a daycare centre, which bodes badly for me and his usual Local drop-off tomorrow.) There were 7 kids and 6 adults: the ratio is usually about one to one, sometimes even more adults than children, depending on the need. (The staff at Local daycare take Harry’s difficulties seriously and are keen to help him, but the ratio is 1:4 kids.) There was a ducky little lad with what appeared to be mild Downs, and another kid who was using a mobility frame, although he could also wobble along unassisted. The remaining children were all language impaired to a greater or lesser degree, but no other issues that I could see. I’m told there are usually between 6 and 10 children attending a session, a couple of whom are very severely functionally impaired, but the majority are simply language delayed.

It wasn’t the most inviting-looking building in the world, dark and old (in a bad way; we’re not talking Tudor here) although with a lovely garden attached, turfed throughout, with no hard edges and a smallish selection of nice toys.

They asked me, in the course of finding out about our history, if I had ever applied for disability living allowance for Harry. I sprayed my coffee in most ecumenial fashion over everyone in the vicinity, near and far. Say WHAT, now? *Splutters* He’s cognitively spot-on, people! Even a little ahead of his age! But… yes. Apparently, the level of agency involvement with Harry is a fair indicator that we could quite likely qualify for the lower level of state disability payment. It’s about £18 a week and would cover the lion’s share of his daycare costs but… there’s that D word again. It does insist on cropping up and I am never, ever suitably prepared for it.

The activities were fabulously well-aimed for kids like Harry in… Holland. They used makaton and visual aids for absolutely everything and kept the kids’ attention beautifully. (Harry blatantly thinks circle time at Local daycare sucks a clown’s balls and it’s generally his cue to slope off outside on his own.) A speech therapist comes nearly every week and they have regular physio, occupational therapy and paediatrician input too. Although Harry was actually climbing determinedly up the fire doors for most of the activity-time in a frantic effort to get outside and play, I know that once he settled in he would derive infinite benefit from their one-on-one approach. It’s run by a superlatively trustworthy friend, it’s breathtakingly cheap, it’s exactly what Harry needs – and of course, there are mighty snags.

Abacus is probably 10 miles away, in a town and on an estate I used to live in and have darkly unhappy memories of. The sessions are only 2.5 hours long, and even though it’s only a piddling £3 an hour, it’d barely be worth, in fuel and time, me coming back home.

Harry’ Local daycare is 2 miles away, attached to the primary school that Harry will – I am currently assuming – attend. John went to school there. They have more toys and are the Italy to Abacus’s Holland.  We really wanted Harry to become accustomed to Local place this year, so that pre-school in a year’s time did not come as a shock – if he actually ends up attending Italian mainstream pre-school. I like Local place, and so does Harry when he’s not in the throes of major separation anxiety.

Simple! I hear you cry, bored and desperate for coffee stimulation by now. Send him to both! 2 sessions at Local, 2 sessions at Abacus. Blow the budget and you’re sorted!

Yeah. If Harry exceeds 2 daycare sessions a week, he loses Portage services. Sending him for one session in both places is half-arsed and not considered a good idea by Local, Abacus OR Portage – who are unhappy and apologetic about the recent reduction in the cutoff level from 5 sessions to 3. We have to choose between the three of them.

If I cut Local out and instead spend 2 or 3 mornings marooned in a random coffee shop near Abacus… I’m not only sad on my own account, because I like Harry going to Local but it also means that I’m taking several steps backwards organisationally and will be more behind and stressed than ever; Housework: Nil, Business: Nil, Time To Self: Nil.

If I don’t send him to Abacus, then… well, I can’t do that. I have to send him to Abacus. As it’s just over the county border, I am considering asking them to keep Harry’s presence there a Big Administrative Secret, but I think in practical terms it’d be like concealing a secret airbase: people do tend to notice the odd jet flying in and out. Plus there’s paperwork and stuff.

If I send him to both Local and Abacus and lose Portage, then we’ve lost a weekly visitor to our home – no fuel! no travel! no stress! fun games! all positives! – who has demonstrably done Harry some good. I value her input a good deal.

Crap. Arse. It’s got to be Local for the choppy-chop, hasn’t it?

Bloody rules. We are not amused.

A Bargain Assortment of Bads and Goods

I’m sat here deciding whether to compare myself to a busy bee, an army ant or a blue-arsed fly. Whatever. You get the picture: me, insect, scary hybrid, yes?

My exoskeleton bum has not touched the ground much. I have actually got going properly with my cards since returning from that thing I loosely termed a holiday, and have finally turned over my first thousand quid. This is money I can keep all to myself!  must share with the Inland Revenue  must give to John, who pays my credit card  must use to pay Harry’s nursery fees will never actually see, but it’s highly satisfying to have my own funds in my wallet, nevertheless. John keeps asking hopefully when he can retire.

Tomorrow afternoon we are off to hear how desperate – or not – my FSH levels and all my other assorted bloodwork gubbins are. I am taking my ultrasound report: the bad one. I think it’ll either be cameras or knives next. Bring ’em on.

Harry has passed his exams, bought a car, left home and got married since I last posted. Or… something very much approximating to it, anyway.

I have explained here before that Harry, in addition to a walloping great speech delay, has a further communication block with the concept of ‘Yes’ or ‘No’. He can’t say the words, does not understand what nodding means, and has only recently begun to shake his head occasionally, when he wants to emphatically and imperiously reject something actually being physically held out towards him.

Over the last couple of weeks John and I both felt that his understanding had moved up a gear; that, in subtle and indefinable ways, he was much more au courant with our conversations and activities. On a hunch, I crouched in front of him last Sunday evening, gained his eye contact and spoke up clearly:

‘Harry! Yes or No? Would you like an ice cream?’

‘DJESS!’

Cue much, much jollity. I wasn’t sure he’d do it again, but he has, he has, he totally bloody well has, every day since, although not quite yet every time. Sometimes the word isn’t recognisably a ‘yes’ – it can default to ‘dat!’ or ‘giss!’ but that’s not so important in the scheme of things. Even more encouragingly, a day or so afterwards he began to shake his head in response to spoken concept choices. Predictably, the first instance of his demonstrating this was our asking him if he would like to go to bed; there was an icy, considering stare, followed by a determined shake. He promptly slithered off the sofa and beetled off at high speed to hide in the kitchen. John and I laughed like a pair of blocked drains, and he did, in fact, buy himself another 20 minutes of play time with that shake.

This is, obviously, several different and fetching shades of Complete Awesomeness.

He is still dribbling buckets and has his fingers permanently jammed in his mouth. I was convinced the dribble must be low muscle tone until I peered inside his mouth during naptime earlier today and found that 2 of his secondary molars were erupted – and obviously have been for quite a while – and the two remaining baby teeth are bulging at bright red and white gums. That’d be a Maternal Observation for Dummies: Module One FAIL, then. 

I also spotted that this peculiarly yellow, calciferous-looking tooth

Harry tooth

harry tooth 2

has not improved any since the last time I had a squint at it. The rest are all pearly white and smooth, but this one popped out of the gum bright yellow and obviously has something strange going on. I know enamel irregularities are rather more common amongst premature children, but I don’t like the look of it  – or the sides of his rear tongue – much. I don’t expect it’s significant, but I’ll show it his Paed in any event.

What else? Ah, yes, physio. I wrote a stinking email to the head of Paediatric Physiotherapy, challenging their refusal to treat Harry if I supplemented his treatment with private care; I mentioned in passing his other professional care input. She rang me back to apologise for the ‘miscommunication’ and freely admitted she had not prioritised Harry: his Paediatrician’s referral had made no mention of the fact he also recieved Speech Therapy and Portage from the multi-disciplinary team, merely that his parents had concerns regarding his mobility. I knew this to be perfectly true – I have a copy of the referral – but I rather thought the fact that they do all work for the Integrated Disability Service was significant. She explained that the involvement of other professionals generally rang warning bells for them, and that Harry would now be seen within a fortnight. Result. Of course, if I had listened to John and asked Harry’s Portage key worker to hurry the physio referral along on our behalf, he’d have been seen a month or more ago. My bad.

In an entirely different Not Listening to Hubby (My Bad) episode: my friend had a old summerhouse she wanted rid of, which was the precise size and dimensions that I have been hankering after and scouring Ebay unsuccessfully for. We agreed on giving her £20 for it, and I booked Hubby + trailer + strong right arm to come and dismantle it from her garden last Wednesday.

John was dubious about the whole idea, and said so. He was excessively mentally scarred during a dilapidated greenhouse dismantle-and-reassemble project that his Mother talked him into, a decade or so back. John’s unprecedentedly savage response to the absolute piglet job she had landed him with (some of his muttering was, apparently and unusually, actually audible and decipherable) has remained the talk of the family ever since, and he has entered a firm nolle prosequi to assorted proposals of garden buildings removal ever since. I have, however, been banging on relentlessly about wanting a summerhouse for a couple of years, and we haven’t been able to afford so much as a dog kennel, so he cautiously agreed.

Readers, he was nasty to me when he saw it. Admittedly, it was rather more rotten than I realised and the roof was larger than the estimations I had given him by a factor of roughly 350%. He attacked it brutally with a crowbar, ignoring my yammering protests when aesthetic or vital bits splintered and ricocheted off in all directions. I kept a low profile for the rest of the day. I have no idea where it currently is: John drove down to the farm with an expression that indicated the only place he was considering parking the trailer was by the burning heap. I haven’t asked after its fate.

The day after that, John and I managed to miscommunicate badly, with the net result that he thought I was aware he had left Harry downstairs watching TV, and I was in the shower thinking Harry had gone with John to the farm. After 30 minutes of blissful leg-shaving-hair-drying-toenail-painting-me-time, during which I had been strangely puzzled by the odd thumps and bangs from (I presumed) our tortoise, given that we were supposedly alone together, I arrived downstairs to encounter – horrified – a totally naked small boy, a puddle of wee (these first two items are common encounters) a torn £50 note, a wallet emptied, plastic and coinage contents scattered to the winds, and a number of ‘don’t touch that, please, Harry!’ items where they shouldn’t have been. Our bad.

I have made jam.

The great jam massacre

Lots and lots and lots of jam, nearly all of it either under-or-over boiled. Damn you, £6 Lakeland jam-thermometer. Bloody thing. It tastes fine – I didn’t burn any of it this year, at least – but most of it needs bringing out of the jar with either a chisel or a spoon. I have 2kg of preserving sugar left, and probably ought to go and relieve the groaning trees of their plums – fnarr, fnarr – but I’m not sure I can face the inevitable jam carnage again.

I was going to do a post about dozens of things this week, and had time for none of them, but I want to write a little about about our local ploughing match, despite the fact that I was flustered (due to downstairs-alone-toddler) and took no camera – without which I can’t do the event justice. A shame, as it was held this year in fields perched high above the River Arrow valley with simply glorious views. There are proper, old-fashioned Bilbo-Baggins eleventy-first-party white marquees, built with huge centre poles and hemp-type guy ropes; men with ancient tractors roaring away industriously at their rich, dark, straw-scattered furrows 10 feet outside the marquees; the hedgelaying competitors turning a straggling, leggy length of centuries-old hedge into – well, I never quite understand how they judge hedgelaying sections, but it certainly looks neater when they’ve finished; the Shire horse pairs with their gleaming flanks, braided manes and tails, fluttering head plumes and polished show harness; the 100-year-old traction engine and threshing drum making an almighty racket as wiry old men feed armfuls of wheat into its maw, and honest-to-God agricultural types who turn up in tractors and battered 4x4s wearing a green-to-dun spectrum assortment of boiler suits, cotton checked shirts, boots, wellies, flat caps, waxed hats and Barbours, complete with a thick scattering of farmers’ wives, who bring splashes of pastels and bright pinks to the golden straw-stubbled field. There was a light breeze, scattered clouds, bright sun, a fresh smell of straw, liberally mixed with horse shit and tractor oil – and I was unusually and fabulously happy. I do love this event, even when it’s pissing down with rain. As I was, for the first time, working as opposed to visiting, I was inside a marquee selling cards with tractors on for most of the day, but I was by the door and could see over the main field and valley beyond. My Mum bought Harry along in the afternoon and he went potty with excitement over… just about everything. A good day. A really, really good day.

Speaking of which, Harry had a good time at nursery last week. I stayed with him for the Tuesday session, but he flew the nest alone on Thursday with barely a wobble when he saw I wasn’t staying. I bawled all the way home; he had a marvellous time. They are still getting used to his wobbles, and he came home with an – unmentioned – small red welt under his eye which later turned into a shiner, but that is unfortunately almost a bi-weekly event for Harry in any case. I’m not surprised they didn’t mention it, they won’t have noticed him do it. On Tuesday, I was asked by one of the junior staff if Harry’s tolerance to pain was ‘like, insanely high’?

Sigh. Oh, he feels it, all right, luv. He’s just used to it.

He’s off again tomorrow morning, and I have the unaccustomed luxury of deciding what particular household or business activity I want to apply myself to. Last Thursday I had an order for a birthday cake to keep me (very) busily employed (fun to do if you can spare the time, but hugely unprofitable unless you charge a small fortune – and absolute murder on your back) (the first person to tell me that the Union Jack is missing some bits gets a poke in the bloggy eye. It was late, I was tired, I was aching, and John is still blinking);

Suitcase cake 1

Suitcase cake 2

but tomorrow I am free to choose what I do in my toddler-free slot. 

Reading with your feet up is a household activity, surely?

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