That Which Does Not Kill Us

While slumped in the dazed calm that generally follows a particularly satisfying desk head-thunk, I was sure there was a nice little proverb about the benefits of having a second aggravation, ludicrously, distract you from the stress of a first – but my punished, dessicated braincells couldn’t remember what it was. Judicious googling turned up lots of quippy little bon-mots that, although they weren’t the phrase my brain is still reaching for (and will probably remember at 4am one morning next month) I felt our current situation in re: Harry’s education had a close affinity with several of them.

If anything can go wrong, it will
We have hit problems, I think, with Harry’s school entry in September. In a nutshell, he has an educational need, and because the entire first world is flat stony-broke, funding that need is… highly problematic.

Fine words butter no parsnips
Harry’s speech is improving daily – hourly, I sometimes think. He still, however, has a very significant communication difficulty.

Distance lends enchantment to the view
Harry doesn’t look, at first glance, like a kid with special needs, once you get past the speech issues. I am sick to the back fucking teeth, in fact – having suffered nearly 4 years of it, mainly from family and not-quite friends – with breezy, well-meant, kind-hearted, badly-informed, infuriating assurances that ‘he’s absolutely fine, he acts just like ours did, we can’t see anything wrong with him!’ 

Yes. I know you can’t see. There’s… how can I put this? There’s a reason for that.

Comparisons are odious
The simple fact is, recognised in his draft SEN, that Harry requires adult support for more everyday tasks than is usual for a child his age, partly because of his behavioural, sensory and attention issues, and partly because of his hypermobility and poor co-ordination. And yes, we hope and expect he’ll grow out of most of it.

Getting blood from a stone
We are currently on (Draft) Statement of Special Educational Need (Revised), and we will find out in the next few weeks if a formal SEN is going to be issued by our Local Authority, who are, anecdotally, becoming Draconian. We are expecting it will be given, mainly because all the assessment work took place back when Harry was really struggling to put two recognisable words together and I was told it was pretty much a certainty, but everyone is telling me that SENs from our LA have the rarity status of rocking horse poo this year. 

The law is an ass
Entirely fulfilling the educational provision specified within formally issued SENs is a legal requirement. Naturally, this costs money. The Local Authority are very conscious that with every SEN they issue, they are fundamentally potentially issuing debits from the education funds controlled by… the Local Authority. You will find many online discussions concerning needs-based statements of SEN provision giving way to funding-driven statements – or even no statement at all. Such is the current budgetary state of our education system.

Rob Peter to pay Paul, and cut your coat to suit your (unvarying) cloth
Funding for all SENs is delegated to a school’s budget through the SEN funding formula, whatever that is. Essentially: the bigger the school, and the poorer the local community, the bigger the budget. Our local, chosen village school is tiny, with only 100 pupils, situated in a very affluent area. Their special needs budget is not large, and the school’s governing body (our community neighbours, fellow parents, and teaching staff) must make it stretch across all their SEN- or Early Years Action Plus- (the next level down from SEN) supported children as best they can. A child like Harry arriving among them, with a significant need, would present them – is already presenting them – with a serious funding scare. If Harry needs break-time supervision, as well as a dedicated teaching assistant for part of his day – as it appears from his draft SEN that he does – then that is many thousands of salary pounds that the school has not budgeted for – and, as the Headteacher has told me frankly, that they do not have. The SEN funding formula does not fluctuate to take account of individual children. 

Like it or lump it
Now, strictly speaking, it should be no concern of blithe, happy parents whether the school can afford to educate the child or not; their lucky chosen school has a legal duty to fulfill the SEN provision, and that should be that. The funding war discussion is between the school and the LA.

From the sublime to the ridiculous is only one step
However, if the school is totally unable to comply with the legal SEN provision, then it is my understanding – possibly because, in our case, Harry is not yet enrolled – that they are then entitled and obliged to refuse to admit him. The Headteacher, who has been generous to us with her time and interest, assures us this is not a course she wants to take; nevertheless, it is a distinct possibility. Our next-nearest village primaries in the same school cluster are all, I think, in the same budgetary position. We would be faced with trying to find a bigger, poorer (worse!) school in one of our local towns, who have that mythical beast: spare budget capacity.

Time and tide wait for no man
If this issue is not resolved in the next 4 weeks, then we will be trying to make contact with shut-for-summer schools, and work with an empty admissions department to find our child a place. A tough gig, and as I won’t start him at a school I don’t like, I very much doubt that Harry would start a school in September at all.

Half a loaf is better than no bread
If Harry is not issued with a statement, then he will instead receive Early Years Action Plus support. This is identical documentation and phraseology to a formal SEN, but without the legal grunt behind it, and the school are only obliged to fulfil as much of it as they can manage. Given that Harry’s draft SEN is out-of-date and perhaps a little heavy-handed in consequence, it has occurred to me to wonder if, in fact, his not being issued with a SEN… might be a good thing? Harry would place just as much strain on the reception teacher, God help her, who would still be trying to meet his needs regardless, but he would, at least, be unstoppably IN the school of our choice, and receiving as much of their Special Needs budget as they could spare. But Harry’s needs are complex and expensive, so that takes us back to robbing Peter: the children of our local friends. Undeniably a very bad thing indeed; they have their needs, too. 

Don’t meet troubles half-way
There is a possibility that none of this may happen as we fear. There is a differentiation in SENs that parents are not supposed to involve or concern themselves with: high and low incidence. ‘High incidence’ SENs are given when specific learning difficulty or moderate learning difficulty is determined to be the principal need. All of the funding for high incidence SENs have to be met from the school’s SN budget. Tough tits, etc.

A drowning man will clutch at a straw
Our LA’s online reference file for Special Needs and Inclusion states ‘Currently, for pupils with ‘low incidence’ and behaviour SENs, schools receive a cash grant attached to the SEN, leaving the school free to determine the nature of the interventions required to achieve the objectives specified in the SEN.  Since 2002, ‘low incidence’ has included those statements where the principal need is determined as being EBSD, ASD, speech and language difficulty and some physical or sensory impairment or severe learning difficulty.’

Handsome is as handsome does
And then there is a little footnote saying ‘The LA is committed to reviewing the definition of ‘low incidence’ so that ‘low incidence’ refers to the severity of the difficulty rather than the category of the need and thereby to enable cash grants to be attached only to statements where the resource needs are so high that delegation by formula would not be appropriate.’

It’s the squeaky wheel that gets the grease
So, it all comes down to whether Harry is a Low or High incidence kid (Incidence of WHAT, for heaven’s sake?) and, if low incidence, whether he is issued with a fat cheque to cover his extra educational costs. We have no idea – but no-one seems hopeful. The ball is currently in the school’s court, and they are loudly pleading their abject poverty to the LA. We await the LA’s response.

‘What can I do to influence this?’ I enquired of Harry’s – hopefully – future Headteacher.

‘Keep pestering them!’

The female of the species is more deadly than the male
Well, that I can do. I have no problem with coming across to our LA as one of *those* mothers, because… well. There’s no blinking it. I am one of *those* mothers.

Speak softly and carry a big stick
But I shouldn’t have to worry like this. The school shouldn’t have to worry.

If it all goes bad, and there’s no money and no school and no-one wants Harry because he Costs Too Much Money To Educate, then I will be arriving in a series of offices like an extremely ill fucking wind indeed, and I will be blowing absolutely no good to anyone whatsoever.

*waves*

Hi, peeps. I’m still alive. I have – as of today – stopped bleeding, for the first time in a month. I am, very nearly, with exception of standard post-miscarriage twinges and aches, pain free. I am drug-free, at any rate. I am just so bloody tired.

Stepping back out into the world last week to tackle the school run and the supermarket was more of an assault on the senses than I anticipated; everything seemed noisy and frenetic and inconveniently intense. I imagine there was more of my whites-of-eye on show than usual as I began to triangulate myself back into my customary train-tracks.

I’m ok. I’ve been saying it when I haven’t been, lately, but I more or less am, now. The mood is still a bit precarious, mind you: I had an upsurge of pain and bleeding in the middle of last week, after which the remaining pain largely vamoosed. A couple of days later, the peesticks confirmed what my ferocious heart palpitations were already telling me: my hormone levels were – finally – dropping like a housebrick. I am now, even to my rabidly suspicious immune system, indubitably, no longer pregnant in the slightest. Saying it flatly like that makes me feel a little less ok though, so we shall move swiftly on.

I have incubator-hatched 5 chicks from 12 eggs, which is always a fraught 24 hours, usually providing sad little expired food for the buzzard at some point. A little more than usual this year, due to my being sporadically incapacitated, and humidity and turning-times were not what they could have been.

They were half-supposed to be for Harry’s entertainment, but, as with most livestock, he takes the occasional, mildly interested peer at them, and bumbles off to play with something possessing wheels. I am darkly conjecturing, looking at them, that I have 4 cocks and a hen. Arse.

We had an appointment in Oxford with a paediatric neurology specialist today. John is markedly edgy about Harry’s privacy on this blog these days, and, although I feel sourly defensive about the implication, I do understand his concern. (Harry does, after all, start primary school this September, so help me God.) I have taken the photos down; I’m not sure what more I should or will do. But, at any rate, today’s appointment was a good one, and Consultant was able to reassure us that he could elicit no sign of remaining damage from Harry’s decidedly rocky neurological start to life.

Did he suffer brain damage? Quite possibly; he was a remarkably poorly kid. Has it left discernable damage? No. Will we MRI? Not for curiosity’s sake, no. Does he have other issues? Well, yes. He’s small, and likely always will be. He’s dyspraxic. He’s hypermobile. He still has some lingering sensory issues. His speech is still a long, long way off clear (although the sentences are now long and involved). And – after a 20 minute alpha-numeric ‘learning’ session with him this morning that left me squeaking with suppressed frustration, and mutttering to John that a comparison to teaching a coked-up chimp would malign the blasted bloody chimp – if he doesn’t turn out to have dyslexia and ADHD-type issues, I will eat my sodding hat, gloves and shoes.

A more engaging child, however, I assure you, there exists not, nor a brighter, exasperatingly, delightfully non-conformist button. Despite the little horror wax-crayoning All Over the wall again yesterday, and despite the current toileting Issues (the endless Wet Pants saga is worthy of a whole ‘nother post, and a particularly solid, resounding head thunk) I am hugely looking forward to the summer holidays, when we can roam about the countryside (there will be no inclement weather; I have Decreed It) and do Fun Stuff. I am not emotionally prepared to relinquish him to school. He is only just, now, developing into the chattering little sidekick that most parents have so very much earlier than we did, and I am taking such inordinate pleasure in his Conversation – although I could happily live with the “I Want”s being dialled down a bit. I have only just now acquired him as a pal, and I am not ready to contemplate the long, empty, childless days that approach.

I have, after all, no longer any immediate prospect of them being filled with anything nearly as good.

Mind you, when I was telling him all about his new school and the exciting things he would do, and said to him that I would miss playing with him when I was at home because he would be staying at school to eat his lunch and play with his friends until 3pm, he patted me on the hand – an entirely new gesture – and told me, bracingly, as if it ought to be obvious, ‘Play with Daddy!’

A prosaic child.

Tulips

Wotcha, fellas. Didn’t mean to vanish, but I’ve been a bit washed out. And possibly washed up.

What’s to tell? Well, given, 1) that I have spent the last week in disappointingly savage amounts of pain concentrated very narrowly on my ex-pregnant uterus, 2) that I took heparin and aspirin for 5 weeks specifically to improve placental infiltration, and, 3) that the stick I peed on a couple of days ago is still Dark As Dark: I conclude I almost certainly still have fragments of placenta lodged deep in my endometrium.

My white blood cell count is high, according to the Drs who keep ringing me up and blathering about the antibiotics they have already prescribed me (discharge paperwork fail), yet I have no signs of infection. Consequently, it is looking more and more likely that the autoimmune disorder I already suspected I host, is viewing these placental fragments with intense horror and suspicion. Had it stopped at merely viewing, it wouldna be so bad, but, not content with having neatly ejected Turbo, I then progressed, miserably and inexorably, some 4 days after miscarriage, to full labour contractions. I emphasize, again, the full, because, having previous experience of childbirth with bugger-all analgesia save entonox, I remember precisely what meaningful expulsive contractions feel like. To my reluctant interest, the gravidity of the uterus in question has no bearing on the ferocity of cramp, or pain level that can be achieved. Who knew?

You’d think, given foreknowledge of Ah! Labour Pains! I would propel myself into hospital before it all ramped up to that level, but… Ann just ain’t that clever, ladies and gents. I have viciously painful periods in any event, and I was grimly convinced that the cramps must surely plateau out anytime now…. now… now?… Jesus God, there’s no baby to come out. Absurd. Christ. Can’t talk anymore. Am going to have to start groaning soon. Am going to have to start screaming soon. Collapse. Tears. Bathroom. Howling. Husband. Delightful Doctors Next Door; for which, dear God, I am profoundly grateful. Arrival of babysitting in-laws to view my ignominious, gasping, staggering, bent, pyjama-clad departure: profound lack of the grateful.

It was about 10pm on a pleasant summer’s night, and I was, obviously, in a peculiarly accentuated state of awareness. I have memories of beautiful silhouettes of foliage against the deep blue and darkening sky, interspersed randomly with the texture of the plastic dashboard moulding that my white-knuckled fingers froze to. I think I probably groaned a lot. John likely thought it a longish drive. Re-run of the wheelchair shame, with thankfully far fewer spectators this time. Pulled backwards down long, curved, deserted, glowing, yellow-lit corridors. John has learnt where the bumps are, now.

When you present with pain post miscarriage, particularly in the wee small hours, it matters not one jot what it says on your medical notes in re: This Woman Is Complicated Stuff: Page Your Boss. No. For a start, your notes won’t be there anyway. What WILL be there is a tired SHO. You can always tell when the nurse has collared them about your particular case, because the exclamation ‘Two?’ will travel loudly down the quiet corridor to where you are huddled, gripping the entonox cylinder as if it is your Best Friend Forever in the entire world, which, at that moment in time, it pretty much is. (You swiftly realise that it’s far too little, far too late, and the co-ordinated discipline required to both hold the mouthpiece and breathe is actually beyond you; you gratify a long-held wish of your husband by passing it over to him instead for a swift try.)

Gynae Drs are looking for the two most likely causes of pain at this point: infection (take bloods, set up IV antibiotics) and a clot wedged in cervix (speculum examination). It matters not two jots how clearly you enunciate between contractions that the cervix in question is not, really it is not, visualisable by speculum examination: they seem to feel they are mightily culpable if they don’t take a look anyway. (If you are very lucky indeed at this point, they will trot off to tell their Registrar they can’t see what is allegedly (‘Two? Are you certain?’) there, and the Registrar won’t believe the SHO or read your notes, and will want to re-examine you themselves.)

I was fortunate this time: I had a reasonably kind-hearted soul who was moribund with a streaming cold (that I can’t believe I didn’t catch), who gave me pethidine (demerol) before the speculum exam. Murder the pain: it did not, precisely, but it made the world a more acceptable place for an hour or so. Voltarol and IV antibiotics followed, and I eventually managed some hard-won sleep. The pain had settled by morning  and a scan showed no retained products – a neat euphemism – although it did show a reasonable depth of evenly-distributed endometrium still to come away, not necessarily this month.

So, off I trotted home. And that evening, the whole frantic shebang started up again. It fell, thankfully, a tiny fraction short of full-throttle contractions, and merely stopped squarely in Significant Agony. By dint of swallowing a (when I looked up the max dosages afterwards) highly unwise amount of paracetamol, voltarol and codeine during a Cocktail (un)Happy (9) Hour(s), I managed to put some kind of lid on it. I emerged from my drug-induced exhausted stupour around noon the next day, and that evening… yes, you have it right. It all started again. Marginally – just – less crippling than the night before, but still a long way north of anything I’ve experienced, bar actual childbirth.

And so we went on, me and my detonating uterus, all week. Every 24 hours, the blasted organ would spark up again, in a slowly dwindling series of attempts to rid itself of whatever tiny remnants were causing my whole system such overblown and tragically misguided panic.

It wasn’t my best week ever. Harry was on half-term and I missed him badly, I saw him so little. I am still not entirely out of the uterine woods (now there’s a nice surrealist image for you) but I’ve been quite a bit better since the weekend. Hurrah for the end (I hope) of the £4,000+ miscarriage.  

Well. That was a nice few months that were… less than invigorating. I always knew that this was a highly probable outcome. The worst part, for me, has not been the painful aftermath, mind-blowing as it has been. Pain is fairly straightforward, at the end of the day, and there’s a certain amount of mental detachment you can achieve with it, given practice. I found it less far easy to subjugate the grinding day-to-day worry that came before it – I’d choose pain over anxiety in an instant – and my stomach-churning panic, over several hours, when I couldn’t find the heartbeat. Those are not moments I particularly wish to re-live. 

But, of course, I will.

Tulips

Months ago I dreamed of a tulip garden,
Planted, waited, watched for their first appearance,
Saw them bud, saw greenness give way to colours,
Just as I’d planned them.

Every day, I wonder how long they’ll be here.
Sad and fearing sadness as I admire them,
Knowing I must lose them, I almost wish them
Gone by tomorrow.

Wendy Cope

The Pain

turned out to be in the post after all. Oh boy, so it was. Uterus has been playing Silly Buggers and inconveniencing everyone, primarily me.
Here I am again. Same hospital. Same ward. Different room.
Uterus, which had worked up over 2 days to full labour contractions, laughed at Entonox, fought back alarmingly well against Pethidine, but eventually fell sulkily into line for Voltarol, and I can function again – for a given value of function. I am currently lying in wait for the nurse who squeezed my badly-functioning drip last night, in case I can contrive to run my drip stand over her toe. Thus I amuse myself until breakfast, because it takes more than this to put a Hairy off their food.

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