Some Perfectly Adequate Crying

One of the Piddle Mums is a proper sweetheart. Really and absolutely a sweetheart. Every time I’ve looked a little down, a little stressed, a little distraught at babygroup – she’s been on the phone or texted that night. She is absolutely the type of friend I would like to be to other people – and know I never could measure up. 

Late this afternoon she rang my doorbell, prompting John, who often divests himself of his diesel/chemical/shit covered trousers in the hall, to dive entertainingly for a pair of baggies. 

‘I can’t stop,’ she said (and the frantic sounds of trouser-fighting behind me subsided), ‘but I thought you deserved these.’ She held out Thornton’s chocolates. ‘I felt so sorry for you this afternoon. I followed you out into the street when you left, but Harry had gone a bit quieter and I didn’t want to set him off again.’ I choked back the fast-rising FLOOD OF SELF PITY and sadly told her he had merely been taking stock of the change of surroundings. It took me several minutes – and some reasonably forceful handling – to insert him into his car seat and get the straps done up safely. Longer than it should have done, because he’d ripped my specs off and thrown them in the road – whizzy with cars – behind me, and I couldn’t rescue them because that would have entailed actually losing my tenous grip on the spitting hellcat that was my child. She twisted her mouth in sympathy. ‘If you ever want to talk… I know it must be hard…’

Bless the woman. She’s right. It is hard. He has dozens of smaller meltdowns everyday, and it’s by no means the first time I’ve lately been obliged to bodily remove him during a Harry ‘Special’ for the safety of the children around him, not to mention his own. I tend to have to carry him out past a row of wide open eyes, all watching in silent amazement at the sight of a child who has absolutely and spectacularly lost it.

But… plenty have it much, much harder. He fills our lives. That’s my actual son headbutting the door over there, everyone! He’s fabulously lovely, really; a tiny knight continually charging off to do battle, or at least prod some serious buttock with his lance.

lance 1 

His Portage worker came today, and I took the time to explain to her how awful his behaviour is becoming. I empathised with his communication frustration and she pursed her lips. ‘Well… he does point… and tow you about… ask for things… signs a lot better now… I suppose it could still be frustration, but perhaps… I don’t know… he’s a bit young, still… don’t usually do anything before 3… it might be worth exploring… referral to a behavioural psychologist?’ 

So I’m now back with the worry that Harry’s communication delay is incidental to the rages and he is actually simply a particularly cross toddler, with an extra-concentrated dollop of our worst character attributes to boot. I can… ummm… see ourselves. In him. Clearly. I am generally at least as furious and indignant as Harry is when I don’t get my own way; I am also, under the fluffy babble, a high-handed and imperious bossy-boots. John… cannot count altruism among his good points.  He frequently has minimal regard for anything or anyone that does not directly benefit his own sweet self. Come to think of it, we sound just like a pair of classic toddlers ourselves.

John surprised me a little this evening by accepting the suggestion of a paediatric psychologist without demur – but on the other hand, he has been kicked an awful lot lately. Whether we manage an NHS referral is another thing altogether, as I rather expect Harry’s Paediatrician will be slaveringly keen to discharge us when we see him next. Physiotherapy, apparently, can Do Nothing For Us.

I walked out of his physio assessment last week completely bemused. I couldn’t shake the feeling, paranoid ol’ me, that I was being fobbed off. She let slip knowledge regarding Harry’s background that made me suspicious that she had spoken to Harry’s Paediatrician already, as by the physio department’s own admission, the referral he made to them had contained hardly any information.

He did fall during his assessment, often. Mainly, as the Physio correctly said, through not looking where he was going, or simply not taking any care not to fall. Such face-plants make up probably 60% of his total overall but were maddeningly predominant that day; his inexplicable collapses and sinuous wobbles he didn’t really exhibit properly. She put him on a ball and swayed him about to test his muscle tone, and he actually responded wonderfully well. I mused as I watched them: lately, he never knocks the back of his head coming down slides – he has greatly improved the muscle strength around his tummy and neck without me actually noticing it.

She conceded that he had hypermobility in his joints and ‘floppy’ muscle tone. She told me he had done well to hit his physical developmental milestones on time: she saw children with this degree of hypermobility and floppy tone not walk at all until they were 2. Generally she would prescribe exercises to increase muscle strength – but Harry is already unusually and ferociously strong. I may have rubbed my bruises reflectively as she said this. She commented that he was a quite exceptionally high-energy child, and consequently: his own best therapy. A less active, driven and determined toddler would have been significantly less mobile, which did make sense.

She told me she could see no evidence of any neurological complication – and could see nothing to support our impression of low trunk muscle tone. Which puzzled me no end, because floppy muscle tone IS low muscle tone; I understood them both to be terms for hypotonia. Her explanation of her explanation confused me still further – something about him being congenitally floppy in tone, but it not being anything to do with his brain. Ummm. Ok. She wasn’t clear, and neither was I: doubtless his Paediatrician will give us a precis when we see him.

A part of me thinks I should relax and play the watch&wait game. Irrespective of what’s causing Harry’s wobbles, a paediatric physiotherapist has told me there is nothing we can do to improve his walking. The other part is screaming in frustration and considering a private referral to Second Opinion Land. When Harry goes to nursery, he has to walk holding my hand along at least 200 ft of pavement. Harry doesn’t do straight lines or exciting outdoor situations very well, so he generally falls about 6 or 7 times during that walk. I notice people noticing. And then I think they must be noticing all his bruises, too. On Tuesday, he fell about every 10ft and a waiting Mum asked me if ‘he’d hurt his legs?’ 

I came home and sobbed, because I don’t want my son to be the one that everyone looks at because he can’t walk properly and can’t talk, or be the mother that people feel sorry for and give chocolates to. And then I decided I’d better snap out of it because A) all I wanted was a child to love and care for – I don’t remember making conditions about exactly what sort and B) John wasn’t taking a blind bit of notice, bar a quarter-turn away from his on-line bridge session* and a vague pat on the leg, so it seemed a waste of some perfectly adequate crying. We had a bit of a row about that. (And… umm… about Mandatory Forcible Toothbrushing Being A Bad Thing For Children, too… and about the fact that John thought we actually didn’t need a fireguard because, a-ha, get this… Harry (just two) COULD BE TRAINED not to go near or touch the incandescently hot woodburner. I usually reserve the exclusive right to criticise my spouse, but feel free to tell him what you think about that one, coz the daft old sod still thinks he’s in the right.)

*Incidentally, if you happen to frequent http://uk.pogo.com/games/bridge at all, and you encounter Big Hairy, DHairy, or The Hairy One, or some hirsute equivalent… yeah. It’s him. He’s quite good: even his genial soul of a father remarked dryly one day that ‘his beady eyes can see round corners, I reckon’. On our neighbour’s annual Whist Drive, watching John’s eager scramble to leave any table where he has been landed with me as a partner is… priceless.

Where was I? Oh, yes! Moaning! Which is a bit misleading really, because, bad afternoon today aside, things are Really Not Too Bad. I have cheerfully and shamelessly told a whopping great Untruth to the nice lady from Portage, telling her that I am reducing Harry’s daycare Tuesday and Friday sessions to just Fridays (I am… come next month. Or the month after. The new year, say. In the new year.  At some point.) and taking him to his special needs nursery on a Monday (which I totally, totally am, they having most obligingly agreed Not To Mention To Anyone about his cough Wednesday session). It might not work out, as, together with his visiting Speech Therapy and Portage, it’s a lot of input, and my calendar is a bit scribbled-on, but Harry does seem to thrive on excitement and activity. There’s none of it we can’t decide just not to do for a few days if it suits us to take a break.

I’m sat here munching the chocolates – having already lost Not One Jot of pre-laparoscopy weight – and occasionally coughing like a blocked machine gun, as I have a cold I can’t shift. I had planned to catch up with my commenting or sort my delivery out, but I’m actually going to go and watch Scrubs with John instead, and remember, today, to feel thankful for the fact that I am able to take photos like this

Whizzy car

and revel in the fact that I can take half an hour out to ignore the housework during the day while Harry naps and play with frivolities like this instead

wreath

while the tiny chap upstairs in bye-byes land gears up for another full-throttle day tomorrow.Shark!

Shark!

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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.

Harry’s Birthday

I never did get around to posting about Harry’s birthday.

 We were gathered in the hallway about to leave for his party, when Harry, in one of the accidents he so often suffers, overbalanced on the stairs in front of us all and smashed his eye socket hard into the wooden stair rails. I could tell by the thump it was a bad one, although John, also in a tense mood, saw fit to instantly berate me for over-reacting, before he had even inspected Harry’s damage.

So now: Harry has a cut, swollen eye, and is roaring like he is being murdered. I have, strangely, suddenly decided that occupying the same planet as my dear husband is vastly over-rated. I am sat in the living room cradling my shrieking child, tears running silently down my stressed face, as the clock ticks rapidly towards – and beyond – Party Time! Yay! Well, we were late. Half the guests were waiting outside the hall. I turned up at Harry’s 2nd birthday party bootfaced, tear-stained and miserable.

I wanted to grab Harry, flee far, far away to somewhere I could cuddle him in perfect peace, and cry a quiet river into his hair when I got there. The UK ‘BBQ summer’ had rendered the north-facing village hall so cold that we had to make pots of tea simply to warm people up. I suppose I was doing a bad job of trying to adjust my features upwards, because everyone kept asking what the matter was, and then Harry collided with something else which made him cry again, and I had to retreat to the kitchen to do some seriously shaky deep breathing at that point.

I eventually managed to get a grip on some stiff upper lip, and laid the food out. I calmed down a fair bit when I’d got them all sat down and eating, and I began to feel a little less like a trapped animal. Then I cheered up substantially, as someone I knew walked in, who was unequivocally coming to stand shoulder to shoulder with me in my emotionally torrid little corner – bringing two extremely special and immaculately tricked-out little guests:

Nick & Nora

and I’ve begged all these photos from Shannon, as to my annoyance I took virtually none.

We sang Happy Birthday to my handsome little man.

Harry happy birthday

I helped Harry blow out his candle I blew out Harry’s candle

Harry candling blowing

and we cut his cake.

Veg patch

naughty pig

cake

We had practised blowing (oo-er) but all Harry can manage yet are comical piggy-snorts.

After the party we headed home, and Shannon, poor girl, must have been sadly conscious of the contrast between her and Alistair’s welcome of me to their beautiful home… and… ours. She’d just had a really long drive, during which Nora gave her heart failure at 70mph by discovering how to work the door release catch – and arrived to chaos. John and I had completely forgotten to screw the rail for the roman blind up that morning in the second guest room, obliging me to precariously perch a large art print over part of the window to darken the room for Nick & Nora instead. I also noticed that John, despite having had strict instructions to clean the guest bathroom (he claims I must have dreamed telling him this), seemed to have entirely omitted to clean the tidemark of Harry’s perpetual grubbiness from the actual bath. Sigh. We’re just not good at this at all. Shannon’s pair of utterly delightful babies (Yes, babies! Babies! They are ALL STILL BABIES! I will have no truck with this ageing toddler thing!) occupied me beautifully until it was time to heave-to once more, as we were having a BBQ for some assorted farming friends that evening.

I enjoyed the evening party enormously. I suspect my dear old father, incidentally, much as he loves me, wants to swop me for Shannon. He has THAT MUCH of a paternalistic crush on her. He has told me no less than 3 times how delightful she was, and has enthusiastically quizzed me – uncomfortably closely, in the secret COUblogGH!/deliberately-left-murky circumstances – on quite how we met. Sadly for him, Shannon’s Dad is highly unlikely to accept a late-life adoption of all of my 14 stones quietly, so I think it’s a no-deal situation.

The weather had failed to live up to its threats and had turned out beautifully. John duly carbonised some genuine pig product on the BBQ, and we settled down in traditional British fashion to crunch away at the burnt bits. I had forgotton that Shannon was vegetarian, because I am a bit fucking useless, so she was obliged to subsist on salad (which she had earlier set-to and chopped herself, because she’s lovely like that), baked potato skins and the chocolate fountain. I’m positive she needed the sustenance, because effortlessly memorising names, faces, occupations and personalities for every guest she charmed must surely require fuel. It’s one hell of a social accomplishment: I generally find that memorising the surname pushes the first name out of my head, and five minutes later I’m utterly clueless.

John, a seasoned drinker as a Young Farmer, now only goes out every month or so, and has gently morphed into a 5-pint-limit susceptible Old Git. He gently folded himself into an armchair and began to snore. I would probably have left him there but Shannon is made of altogether kinder stuff and took pity on the pain his crunched-up form would suffer; we heaved him, leg and an arm apiece, onto the neighbouring couch. I predicted that he would, around 5am, awake and crawl shiveringly into bed. As indeed he did.

 The next morning hurt my head a little, but not nearly so much as John’s.

Do you remember I told you I had sent a birthday card for Harry to CBeebies – the national UK children’s channel?

timmy

Well, they showed it… probably out of sheer GUILT at having RIPPED THE DRAWING OFF TIMMY’S EASEL! You can see the ripped ends and everything! I spent ages on that bloody rainbow! Harry’s is the last few seconds.

Shannon and Alistair between them most kindly ensured that this recording was immortalised for me, as I was stuck in an appalling Bank Holiday queue in the West Midlands Safari Park at the time, being eyed up speculatively by a tiger.

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?

And your problem is…?

 There’s been a lot of hoo-ha in the US press lately (and, consequently, the UK press) about the lumbering behemoth that is our NHS.

I love the NHS. I do. I really do. Irrespective of whether you’re having a mole removed or you’re fighting for your life in intensive care, the only financial aspects of your medical care you generally need to worry about are the hospital parking charges – John and I paid in excess of £150 during Harry’s 10-day stay in NICU.

But… the waiting lists. The patient care ethic. You need to be bloody patient, too, because you’re rarely treated as a customer, let alone a thinking one, the way you generally are in the US. Money, unfortunately, still indubitably equals power, in health care. There is no shortcut to quality (just fresh flowers and tv and room of your own) as the private healthcare staff are usually NHS people supplementing their income by working in an adjoining building, using (if anything) rather older equipment. Never quality. Just… power. And speed.

Harry’s physio referral was made in mid-June. In late July, I eventually had a letter from paediatric physio informing me there was a waiting list. Yesterday, I rang up to enquire politely ‘how much longer?’, as he’d been waiting 2 months. They quoted me about 3 months from his initial referral, which they claimed to have received in late July. I told them he had been referred rather earlier than that, whereupon they dumped blame on the hospital for not sending out the referral form until several weeks after the event. They were then obliged to become red-faced when I dug out my copy of the (prompt) hospital referral letter, which made it quite evident they had sat on it for a month.

Unsurprisingly, the atmos went a bit chilly after that, and I was told that late November was looking like the best they could do. I ground my teeth, and asked if anyone there did private clinics, thinking (ah-HA!) that I could have his initial assessment done privately, and by the time the NHS list caught up with us, Harry would be ready for review. 

This morning they emailed me this:

27 August 2009

 Good morning Mrs. Hairy Farmer,

 Further to our telephone conversation I enclose telephone number of a private Physiotherapist. Except, of course, she actually didn’t.

 If you should decide to go privately we will then cancel Harry’s referral to our Service and he will be punished discharged accordingly.

We know you are now caught between a financial rock and a fiscal hard place. Please let us know how you wish to proceed. We are overworked and understaffed and pissed off about it We already have a waiting list for our Service and if you do decide to burn your boats go private Harry’s place can be allocated to someone else.

 We look forward to watching you squirm hearing from you.

 Thank you.

 Physiotherapy Secretary

Two

I can’t quite remember how to do this blogging thing. Do I just start typing?

As I am sadly likely to gradually forget quite what he is like at this age, I will attempt to describe Harry at two.

Because, astoundingly, Harry is two. 2. Two. One plus one. Two whole years in the world. No longer – and this bit kills me deader than sausages – considered an infant. I can’t let go of the baby in him, despite the fact that he is daily taking enormous (albeit unsteady) strides towards Total Personhood.

He climbs like a monkey, obsessively, clambering continuously both over the sofas and any mammal who seems likely to remain still long enough to be successfully mounted and broken piggy-backed. This urge to mountaineer is an unfortunate characteristic to possess when you are also a congenitally wobbly little lad, but he doesn’t seem to mind the vast majority of his continual face-plants. Mummy minds them more, generally. He is a tiny ball of pure energy wearing a pair of perennially dusty shorts and sandals, between which poke two short, sturdy and constantly bruised and battered legs.

In distinct contrast to his personality a year ago, he is a highly affectionate child, delivering a steady flow of delightfully squeezy hugs, wet kisses, and enthusiastic nose-rubbings. He has lately taken to greeting friendly-looking strangers like long-lost buddies, wiggling his small bottom abruptly onto their laps – even though the possessors were not precisely proffering them up for occupation – and waiting expectantly for entertainment.

Entertainment comes in many forms: he loves his ride-on green loader-tractor with a passion, despite repeatedly and compulsively removing all the pins that make it actually work. Anything vehicular is a favourite, as are his model animals, particularly the giraffe, and his toy kitchen. He has recently discovered the delights of jigsaw puzzles. He gets very excited about crayons, although likes collecting them all into one pile more than actually scribbling with them. This week, he has begun to colour in precise objects in his colouring books when asked to, as opposed to the wild scribbles that were his previous meisterwerks – usually done on any object other than the designated colouring book; our walls and the TV seem to have done particularly badly. He loves his slide, although is a little nervous about descending the 6ft one without a hand to hold, and a visit to the soft-play centre is always hugely popular. Try to walk him past – or remove him after several goes – from the motorised toy ride-ons outside shops and you’re completely cruising for a toddler bruising. He is an outdoors child by preference – doesn’t mind the rain and simply adores garden sprinklers and water features – although his favourite playzone outside is, regrettably, the interior of my car. It’s only a matter of time before he breaks an indicator stalk off. He’s already managed to lock himself in the caravan parked next to it, causing a minor panic whilst the key was located.

He has beach-bum blond tousled locks and a face that can melt the crustiest visitor, perched atop an 80cm 1st-height-percentile wiry, faintly pot-bellied and wonderfully double-chinned frame. He is now tall enough to juuuuuuuust operate the internal door handles, which is Not A Good Thing. He is always busy, always occupied, always operating with mental cogs whirling at top speed. He does not relax unless half-asleep in our arms, quite significantly unwell, or engrossed in a particularly fabulous TV program. He watches more CBeebies than I feel is, strictly speaking, good for him.

His near-complete lack of speech means that he is a fascinating little enigma to me. His communication is by turns sadly non-existent and crystal clear, but making absolutely no progress that we can discern. The most basic building blocks of human contact elude him (he does not understand the concept of choices or how to affirm them, cannot nod, cannot sign or indicate ‘yes’ at all) yet we often feel a small paw slide into our hands, followed by an insistent tug and a steady tow – most frequently towards the kitchen. Here, he will indicate by pointing, opening or clawing at either the cupboard (crisps), the fridge (soft fruit), the dresser (bananas) or the freezer (ice cream), followed by frantic signing (incorrectly, but consistently so) for ‘More!’ – his all-purpose, one-size-fits-all Makaton sign. If we are lucky, he will use some eye-contact as he makes these mute pleas for ‘More!’ food, but generally he stares intently at the object of his desire (or the cupboard door dividing him from it) like a tiny Jedi knight mastering a recalcitrant Force. It is hard to misunderstand, however, when a small boy scurries busily towards you triumphantly clutching a tupperware crisp container half as big as himself, which he plonks down expectantly at your feet before making an insistent, nay, imperious ‘More!’ sign under your nose. Or when he beetles up to your knee and begins to pat your leg in familiar fashion – while very obviously eyeing up your plate. Even visitors tend to understand that one – if they don’t, he simply quietly helps himself. And always, always – often comically so –  to the Very Biggest Portion. 

His mother’s child: he is keen to subsist mainly on cheese, french pastry, fruit and sugary snacks, his desire for rather more pedestrian food being capricious – and thus, of course, reassuringly and overwhelmingly normal. He alternates between effortless consumption of what must surely be his own bodyweight in carbohydrates (his father’s child) (on a good day, I would back Harry with solid sterling against children at least twice his age in a pasta-eating competition) and inexplicable disdainful rejection of what was yesterday’s favourite choice morsels.

His language comprehension, as far as we can ascertain, is about average for his age, and he understands and demonstrates a good many Makaton signs, despite using very few of them (apart from the ubiquitous ‘More!’ to obtain food/open door/tv/toy) pro-actively. His knowledge of nouns far outstrips his knowledge of verbs or adjectives as he goes through his day pointing, glancing round to locate an informant, and chirruping enquiringly. Once he knows the name of something, he will stab his forefinger emphatically when presented with a photo or picture of the object, with increasingly urgent and piercing squeaks, glaring interrogatively from the picture to you, until the correct name of the object is spoken. When the mood is on him, he will spend ages giving increasingly excited signals to his companion to label everything he thrusts his finger towards.

Oddly, in such a boisterous, rambunctious little boy, he has a marked dislike of messy play, dirty hands, and some textures. Sand fascinates him sufficiently to enable him to partially overcome his evident dislike of the way it feels – he will uneasily tolerate it under his feet, but is generally troubled by getting it on his hands and is much happier using tools to interact with it. His Child Development Advisor, or whatever she is called, tried without success today to encourage him to touch some porridge oats. He kept a wary distance from the quite patently Very Evil cereal, although was eventually persuaded to prod it with a spoon.

His speech and language team are puzzled by his peculiar sensitivity to background noises and some sounds, although he no longer goes bananas when he hears a reverse alarm at the farm, and he now permits me to click my tongue in a horse-trot impression without launching himself at me in a desperate attempt to rip out my tongue and stop the noise. Currently, the blasting foghorn/pneumonic death-rattle aural hybrid caused by the airlock in the waterpipes between the bathrooms is the thing that sets him off into frantic yammering tears at bathtime.

He is a beautifully obedient little boy when asked nicely (but urgently!) not to touch, or to put something back, and he gives a charmingly guilty start when he is mid-reach for a known-to-be-verboten object and I clear my throat meaningfully. A new dawn brings a fresh slate, however: every morning, he bounces across the bedroom, climbs precariously onto the wooden stool in our bedroom and reaches hopefully towards the clutter of shiny objects on my dressing table. Every morning I sleepily and crossly tell him to get back down – which he promptly and phlegmatically does.  This game is obviously well worth the candle.

He visibly basks in praise for clever behaviour (he will pointedly whip up more applause all by himself if he feels there was a parental paucity of expressed appreciation) although he is depressingly violent towards both us – and upsettingly, himself – when he is distressed or thwarted. His trunk muscles are comparatively weak, we think, hence the wobbles, but his arms and legs are certainly possessed of painful clobbering-clout. Head-butts are undoubtably his most potent weapon, however, and despite learning some evasive moves (mainly learning to dodge a whole lot quicker) I am now in regular possession of a fat lip, a painful nose and a bruised chin. These episodes are fairly frequent and extremely hard to deal with; both John and I are – and I, personally, choose to use the word – guilty, of sometimes lapsing into angry shouts, and, on one recent occasion, a smacked leg. Remaining calm is the quickest and dryest path through this particular swamp of frustration, yet family always know how to push your buttons. When Harry stops thumping my nosebuttons with his head, that’ll be grand.

His sleep pendulums wildly from uneventful night-long slumber, past 5.30am waking, past hourly night-long screaming sessions, to thrashing, protesting, hysterical bedtime fear. We disconnected his baby monitor (due to an eye-wateringly embarrassing, ahem… broadcasting incident) with the unfortunate result that an unusually early nap-waking went undetected – probably for some considerable time. He was highly distressed when I eventually heard him, and has shown no sign of regaining any bedtime sleep confidence since. There’s only so many times you can read Dinosaurs in Underpants aloud before your own somnolence overtakes his. His changing sleep pattern has its compensations though: last week he not only fell asleep of his own accord in front of the TV one afternoon (he is, after all, a male child), but the next day climbed sleepily into my lap at naptime and when invited to Go SleepyByeByes Now, to my astonishment, actually snuggled down and began to slumber. This, in the middle of all his toys, with none of his usual sleep cues, is Absolutely Unheard Of. Moreover, he woke after 2 hours (motionless) kip on the sofa in an absolutely peachy mood. I bet it’ll never happen twice.

His laugh – a bubbling, chuckling hymn to the glorious blue-skied simplicity that is early childhood –  is simply the best sound I have ever heard, and it lifts my heart indescribably whenever I hear it. Tickling and Peep-po are still reliable eliciters of this audible treasure.

He has, courtesy of this latest birthday, a greatly enlarged fleet of Britains scale model tractors. He can, when asked, unerringly point a finger at the steps, the wheels, the steering wheel, the engine, the exhaust pipe and the pick-up hitch, among others. His father is quite ridiculously pleased by this, although farm-brought-up children do pick up agricultural vocabulary early on. His teenage cousin W visited today (and was ‘More!’d out of a hefty chunk of his slice of Harry’s birthday cake. Harry enjoys cake.) and was reminded by his mother that on his second birthday, he was escorted across the yard by a non-farming family friend who enthusiastically pointed out a tractor (with its engine casing off, undergoing some pipe repairs).

“What’s THAT, W?” – expecting to elicit “twacter”.

The birthday-boy W cast an appraising glance over the stricken machine.

“Hydraulics,” he piped.

Confirmation

Things Harry did yesterday I forgot to tell you about:

1) Dialled the emergency services. Dialled 999, and got straight through to despatch. Listened to the voice for a while before calmly replacing the receiver. It was Warwickshire constabulary who rang back (greeting John by name, which mystifies me slightly – I can only theorise that his shotgun licence flags up on their computer under this address and phone number. I am foggy on just how all-seeing big brother is, these days.) to enquire what the problem was. John grovelled appropriately for wasting police time, although I note he still hadn’t moved the phone!

2) Learnt to attach his brio train track together.

3) Figured out which (nearly-toddler-accessible) drawer of the freezer contains the ice-creams.

4) Ate Sunday lunch with us at the Delightful Doctors Next Door’s house, with Godmother Vet in attendance too. The considered opinion was that still-excessively-snot-ridden-but-otherwise-normal Harry has quite likely had Swine Flu after all – apparently, it really can be this mild. John has had it too, albeit he’s suffered a little bit more. I do so wish a lab test was possible; I’d be so delighted if Harry’d got it over and done with, with so little bother. I have been regularly coated in Harry’s snot, so am seemingly immune – I had full-blown flu 10 years back (and OH DEAR GOD I was SO BLOODY ILL) which theoretically should make no difference at all, but anyhoo: thus far, I have side-stepped the lurgy landmine.

Today, Harry had an assessment to ascertain whether he fits the Portage criteria. The Portage team (the US would term it Early Intervention) are child development advisers who provide weekly home-based support for children who have significant delay in two or more areas of their development. Their goal is to get to know the family, help you teach your child new skills through play, help make learning easier for them, and work with the other agencies – in Harry’s case, Speech & Lang and Physio – to pull together a concerted game plan.

Although I have been certain for the best part of a year now that he needs the help, I’ve also felt defensive and unsure because a variety of people around me have expressed the view that there’s absolutely nothing wrong, bar a few wobbles (normal!) and a speech delay (common!) and a few tantrums (typical toddler!). Like Mulder, you see, I really want to believe.

Well, the long and the short of it is: Harry qualifies. With a big, fat Q. Everyone who told us that Nothing Will Happen Before Age Two, Then Everything Happens – was absolutely right, it appears. Harry’s difficulties have finally become recognisable to trained eyes; the fact that he is switched-on, bright, extremely active and exceptionally visually and aurally observant has also been noted. While I am relieved – because by September he will be drawing down a significant amount of professional input – I am also deeply and profoundly sad, because my poor little boy is struggling, and it’s now officially not just my fevered imagination.

I am not so miserable that I have forgotten to look on the bright side, however. I feel that today’s outcome justifiably excuses me from being obliged to take my clothes off and run naked down Stratford-upon-Avon High Street. You can all put your cameras away!

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