Six hours I have sweated to bring you this short magnum opus. Six!
Our phone rang at lunchtime today; I picked it up in the kitchen which was, at that moment, thickly populated with chatting women, half-dressed toddlers (more on this in a moment) and tiny babies. After some urgent shushing, I was able to discern that the chap on the other end of the phone was from University Hospital in Coventry - our mammoth regional super-hospital: location of my infertility treatment and Harry’s NICU stay - and was ringing to tell me that they have received a referral from Warwick to give Harry an EEG – could he come to the Neurophysiology department first week in May?
I had a fleeting prescient flash of dread vis à vis attempting to glue electrodes to Harry’s unsedated head, but assured him we would be there. I was a trifle taken aback to be hearing about this course of action from another hospital department as opposed to Harry’s Paediatricians - but only a trifle. I have spoken to enough local parents in our boat lately to realise that the parent is generally not top of not near the top of bottom of just not on the information dissemination chart when tests are ordered, because that’s the way it works. A friend of mine actually discovered that a working diagnosis – a fairly serious one – had been reached about her child this way. In fact, if you wanted to picture NHS bureaucratic procedure as, say, some ridiculously overinflated Lovecraftian dribbling blob, with spiny limbs too feeble to shift its own shuddering bulk, then that’s absolutely fine by me. The core competency of the individuals involved in delivering our healthcare is high, and yet the delivery structure itself falls so aggravatingly short. Bah. Stop me before I get going, people!
Teh Positive: New Woman is obviously Briefed, Making Decisions and Doing Something about Harry. This is Good, and makes up for my disappointment on Tuesday when I learnt that New Woman never actually visits the nursery section at School Fabulous at all, and under 4s are all seen in clinic. I had immediately foreseen a months-long wait to see her, and was juuuussst puffing myself up to launch my usual NHS hurricane mixture of righteous indignation, charm, hectoring and pleading at the Paediatric department. I expect there’s a letter to me & the GP about all this lurking on a dictaphone, somewhere.
Anyhoo. Harry has spent the day at home with a hacking cough and a streaming nose - there are kids at nursery to whom a virus can mean Heap Big Serious Fucking Trouble - and minus a nappy. The young chap in question has begun potty training in earnest today; he has accordingly flashed both his new underwear and his tackle around our visitors very thoroughly indeed, and the sight of nomnomnomable Twinkling Buttock is becoming part of the scenery.
This is something that he has initiated himself (I would very happily have left it until warm weather and nakey-bottom-runny-round-outside time) and performed so well with (particularly in the turd department: we have a near-100% strike-rate at home now. Outside the home… ummm. Trickier.) over the last 2 or 3 weeks
that I thought it was worth getting tooled up with proper wobbly-weeble-proofed toilet equipment
and having a go at putting him into Big Boy Pants.
The artwork - the captions of which made me snort a little – endeared them to the wearer immensely: Harry is a quintessentially chap-like young chap and can reliably tell a styracosaurus from a stegosaurus, although he has been awfully diva-like in his firm stipulation of a regular rotation of dinosaur throughout the day, quite aside from the ones that copped the odd leak. They went off and on like (insert your favourite un-PC joke here) all day, as he is bewitched by the novelty of it all. I also have a pack of Shaun the Sheep pants – somewhere – which would go down an absolute storm if only I could find the perishing articles, but he was optimistically given them for his 1st birthday, and… yeah. They’ll be layers deep by now.
We had about a 70% success rate today, which we’re delighted with. He had 3 accidents, 6 or 7 wees in the toilet with its new-fangled and fascinating step arrangement, and one in the potty. As with most things, I suspect his problems with attention may make this process more difficult for him: the accidents came when he was thinking of, or busy about, other things – and I had forgotten to remind him he was in pants. I am heartily, painfully sick of the sound of my own voice today. I have enquired about his toilet needs, on average, every ten minutes. Because Harry doesn’t necessarily tune in right away, I have to repeat the question, interspersed with ‘Listening, Please!’ Grenfell-like expostulations,
several times before he either shakes his head, briefly and impatiently (‘Nrr!’), or grabs, Eureka!-like, at his tiny todger before toddling off at top speed, bow-legged and tottery, to the toilet.
At 32 months he is, in the scheme of things, not a particularly early entrant into toilet training, so I’m hoping he’ll have the wherewithal to build on today’s sterling performance. However, I have heard so very many woeful tales of both urinary and faecal backtracking and blips from friends near and far, that I’m not really expecting consistency. Hoping, yes (coz my laundry pile now hums a bit and I shall have to bestir myself about that shortly). Expecting, no.
On a last, different note, I have been trying to expand my library and track down some of the books I remember reading as a child. I was going to do lots of tricksy googling about this particular one which has been bugging me for years, but it’s occurred to me to try the power of the interwebs first, especially the US contingent. When I was a slip of a girl, I read a book (or a series?) from my junior school library that is awful foggy now, but a couple of little things still tug at me. I have the strong impression that it was American child’s fiction, set in a rural location, possibly a farm. At least one of the children – I think, a girl – used to leave her bedroom via the tree that grew just outside the window. In a memory that seems associative with the same character but could easily be borrowed from elsewhere: there was a sentence or two to about the fact that the child wanted to cry about being unable to peel an apple in one long strand the way her uncle could, before telling herself not to be so bloody daft. Or words to that effect.
Ring any bells, people? I know it’s horribly vague, but you must remember that I was less than 10 when I last set eyes on this book, so that’s 25 years plus. God, I’m old.
Fact Number One:
There has been a damn funny smell in our kitchen for the last couple of weeks. It started as a breath of unpleasantness which I quite happily ignored: the house is inhabited by a farmer, complete with encrusted overalls carrying their own individual bouquet, two extremely clarted dogs (just so we’re clear, by ‘encrusted’ & ‘clarted’ I actually mean shit-plastered) and a toddler who not only insists on being ambulatory whilst eating, but drops food behind him like rain. We frequently have zephyrs of Unpleasantness passing through, and they are thankfully transitory. The dogs generally find the dropped food before I do, then leave, in company with the offending overalls, and we return to the usual inoffensive status quo.
This particular scent stuck around. It became Ominous. Initial forays in cupboards, under the sofa, behind the dresser and beneath the island all drew a blank. It was a tang I couldn’t positively identify, but it was certainly beginning to fill me with a mild apprehension. The last time I was obliged to investigate an emanation that had outstayed its welcome, I dragged a furry dog bed out from under the worksurface to discover that my extraordinarily dim spaniel (frequently in disgrace) had eaten a small bird before vomiting it neatly UNDER the top cushion of said bed.
I began to think about the parents of an old boyfriend of mine, who had a similarly elusive aroma in their immaculate, minimalist master bedroom in a recently converted old barn. We crawled all over that room, sniffing like the Bisto kids,
trying to pin down the origin and nature of the Whiff. We emptied the wardrobes. We took the bath side panel out. We turned out the divan bed drawers. We discussed anxiously whether there was an animal buried under the floor that was mysteriously sending a putrid stench through the concrete floor raft.
Eventually, someone shone a torch into the 1-inch gap between the divan bed and the floor, and it was suddenly like that scene out of Se7en where Brad Pitt goes all hoarse.
‘You better come take a look at this!’
It transpired that the cat had brought in a mouse that was not quite expired; it had evidently scurried just underneath the bed before finally succumbing to its injuries. I am puzzled to this day to how the decay of this tiny creature could produce such a noxious, near-solid stink, but it was a real rip-snorter of a whiff right enough.
As I say, this episode, coupled with the Congealed-Bird-In-Dog-Bed Horror, was making me nervous. I had searched everywhere, sniffing like the bloody Child Catcher, and drawn a blank. Walking into our kitchen was becoming distinctly – and increasingly – repulsive.
Fact Number Two.
During my recent short-lived pregnancy, I had a collection of pregnancy sticks lined up on the kitchen table, where anxious comparisons of the (phenomenally sensitive. A win for Tesco’s own brand pregnancy tests!) line colour-depth were made on a day to day basis. Following an excruciating incident when I unexpectedly entertained 3 friends, in full view of the elephant in the room row of fading peesticks, I decided that they would be better off living concealed in the tin on which I had been balancing them in order to photograph.
I duly shoved them in there, and dismissed them from immediate consideration. I wasn’t planning on taking them upstairs and storing them, but neither was I quite ready to throw them away; they were the only thing I had to reassure me that I hadn’t imagined the whole incident.
Can you connect facts One and Two? No? Well, here you go:
Fact Number Three.
Our kitchen island often looks like this;
the tin is vaguely visible on the left hand side.
Every few weeks someone generally wants me to create something that requires a hygienic kitchen and a large clear space, so I boot every living thing apart from myself out the door and blitz the rubble of bills, toys, fruit, cameras, paints, coins, binoculars, catalogues, telephones, fridge magnets, biscuits, books, newspapers, junk mail and cheque books into tidy order. Upon performing this task earlier this week, I looked at the peestick tin and resolved that it would actually suit Harry’s crayon collection better than his current pot. I also decided that I was now ready to let go of my ephemeral double lines. I moved toward the bin, briskly removed the lid, and… wowsa.
Ain’t nothing ephemeral about that.
Now. Ladies. I know quite a few of you have kept your ancient, yellowing, positive pregnancy tests. That’s just fine. I still have the first two positives I ever had, in fact, sat harmlessly in an envelope upstairs in the bathroom cupboard. The trick to keeping old tests successfully, it appears, is to keep them someplace where gaseous exchange isn’t an issue.
In other words, don’t keep them in a very-nearly-but-not-quite-airtight tin where they can’t dry out.
They pong, you see. And when you have 8 of them, they have a reek-potential level somewhere between ‘Eye-Watering’ and ’Deadly Poisonous’. Merely putting the cap back over the damp end does not mean that you have rendered them socially acceptable and futureproofed.
And I live and learn.
Once I have fought my groggy way, clutching my coffee, past the agony that is Waking (a confused and prolonged event involving small Tiggers, CBeebies, and the lusty blast of a 99p descant recorder that some abject fucking fool keeps forgetting to hide from the said Tigger) I spend my mornings feeling chirpily wide-awake, inspired and bloggyfied-up. I could write reams in the morning. By 8pm, when I am free to type uninterrupted, my Get Up & Go has slunk, shame-faced, off to bed and is snoring GnARrkKily with its mouth wide open and its chins wobbling. Lookin’ good, Billy Ray!
You must also factor in the fact that Harry had an awful tummy bug this morning, and I am waiting apprehensively for the first sinister flip-flop of nausea.
There. I have made my excuses in advance.
Thank you so kindly for your bountiful MADS nominations. I haven’t aspired to much beyond avoiding arrest (both literal and cardiac) lately, but I would be ever-so deliriously pleased were I to actually make it onto… (intake of breath)… a shortlist. I am seemingly the proud possessor of nominations for Blogger of the Year, Funniest Blog, Best Baby Blogger, Inspiring Blogger, and Best Blog Writer - the typing of all of which makes me blush rosily, because I naturally feel that I am none of those things.
This does not prevent me being repulsively greedily acquisitive over the prizes, though, and the shortlists will be a highest-number-of-nominations-type-thing, so if you feel like pasting http://hairyfarmerfamily.wordpress.com into any of the categories… then I shall only mutter ‘Oh, please don’t give yourself any trouble!’ once, (quietly) before politely holding open the bloggy door and beaming at you.
Given that the UK have just kicked off a general election campaign (US readers please note: our election is on the 6th of May; the campaign is a single month long. One. Month. It is quite a sufficient time to slog it out. And if your news programmes become clogged up with our political frivolities – which they won’t, because why should you care? – then be consoled by my jubilant approval, in the nicest possible way, of the poetic justice. Your election, despite being an interesting one, killed me.) I shall add a word on tactical voting: the long-suffering organiser of this whole shooting match non-competitive bit of lovely bloggy fun is naturally full of angst at the nominations for baby bloggers who no longer have a baby, precisely. I feel Harry is now a tad too old for me to have a proper chance at winning that one.
Which brings me neatly onto the small man himself. His Paed’s appointment went ok. Ish. Sort of a no-score draw.
I took some notes along so I didn’t forget anything; although esoterically abbreviated, they were broadly comprehensible to all. I mention this because at the end of the appointment, the Paed asked if he could have them to refer to when writing his clinic letters. If I get copies of referrals describing Harry’s behaviour as Bloody Fucking Awful, then I’ll know he’s cribbed it verbatim.
Anyhoo. He listened. He’s always been a damn good listener, even when he wasn’t concerned because he just couldn’t see in Harry what I saw. (Neither could many people, to begin with, so I don’t hold it against the chap.) In a nutshell, I told him that Harry still has no speech (he currently has no meaningful words at all, and only a small handful of stock articulations ‘dis’, ‘dere tis’), has great difficulty with his attention & listening, is a compulsive & high-energy fidget & climber, has behavioural meltdowns of epic & violent proportions, is continuing to mobilise unsteadily, and has senses that appear to be wired up curiously - and are becoming curiouser.
In an even smaller nutshell, he took me entirely seriously – no speech at 2¾ years old does tend to get people’s attention, I’m finally finding - and said that he was no longer the right chap to be looking after Harry - which I was expecting. His colleague (whom I am hoping I have never met, coz if she’s the random Consultant Paed I had a run-in with in SCBU when Harry was 11 days old then we are already Not Friends; I have now perfected the rant that I should have delivered then and didn’t.) is the School Fabulous Paediatrician, with a specialist interest in neurodevelopment. He said he would meet with her in the next couple of weeks and relay all the information I had given him: she will then see Harry herself, probably in a classroom setting.
He did a particularly good job of not actually criticising his previous locum colleague for referring us, last appointment, to a paediatric psychology service that does not accept pre-teens. He explained that upon being made aware (by me) of the error, he had referred Harry to the child development service instead, for the multi disciplinary assessment that we were keen to have last year. I had, in fact, already heard a rumour to this effect; someone had spoken to someone who knew someone who had seen Harry’s name on the latest waiting list. Harry’s ex-Portage worker had been musing on the wisdom of referring him herself, some months ago, but had decided that an early referral would not necessarily shorten the wait.
Because that, right there, is the issue. The inevitable wait. There are hordes of kids backlogged, awaiting assessment, consequently, until they’ve turned 3, they’ve nary a hope of being seen. The multi-disciplinary assessment is the Thing To Have, you see. The various agencies have all changed their names so dizzyingly often that even the Paed was using old terminology, but essentially, a MDA is an in-depth look at a child’s quirks and capabilities, involves every appropriate professional service, be it psychology or physiotherapy, and results in an Individual Education Plan. Which is all fine and dandy, but I want it now, not in 6-12 month’s time. I asked him if a private referral was possible, but I think the sheer volume of disciplines involved makes expediting it impossible. He is asking the question for me.
All I can do in the interim is highlight the things that Harry is not currently receiving any input for to his new Paediatrician when we see her – which had better be soon, or I will kick off sharply. Things need to be put in place: pronto. Current chap agreed with me that a epilepsy-type protective helmet for Harry would be a very useful thing to have, but I think I’m supposed to take that up with New Woman. He was very interested to hear that School Fabulous’s physiotherapist had already taken an informal look at Harry and proclaimed him to be Officially Unsteady (ummm… hooray? At last?!) and definitely needing supportive boots and possibly also a lycra suit for stability – but again, I think New Woman is going to be in charge of getting physio started, as she is already working on a daily basis with the physiotherapist in question.
I talked about an MRI. I talked about dyspraxia. I talked about ataxic cerebral palsy. I talked about Sensory Integration Disorder. There was, significantly, absolutely no squeaking of horrified accelerating chair-wheels from him this time.
In a final nutshell, he told me straight – as my medical friends have told me before – that a formal diagnosis is something that they will give only if and when they are able to do so – it is not what they are necessarily working toward having. They want to treat his function first, and worry about what label they’ve printed out for him afterwards.
I do see their point. I hate it, and I want answers for his difficulties about as badly as I want to breathe, but I do see their point: struggling to figure out the Why makes zero difference to Harry’s professional input at this stage.
I know all this, yet I’m fighting to keep down panic. I am struggling with an immense, crushing sense of urgency because I feel that we are losing time. Harry’s brain will only soak up information like a sponge for so long – anything he should naturally assimilate now, and can’t, will be so very much harder to learn later on. Study after study after keeping-me-awake-at-night-googling study has strongly (like: worry-type ‘strongly’. Worry Lots. Worry NOW.) linked language disorders to stunted academic achievement and, more importantly, psycho-social issues. I’ve already had to let go of some of the expectations I came into pregnancy with (happily including death, obvs.); I’m not ready to give up all the vicarious aspirations I have for him yet. I have a visceral urge to fight. Fight hard. And… I can’t see the foe.
Harry is developing wonderfully in some respects – his makaton signing and eye-contact is improving by gazelle-like leaps and bounds, and his understanding is demonstrably light years ahead of where he was at Christmas. He keeps remonstrating with me for saying the incorrect thing, for heaven’s sake; he’s undoubtedly smack-bang on his right age for receptive language skills. But not a word can he say, not a bloody word, and his sensory quirks are seemingly gathering momentum. He has started to taste, lick, and press his open-mouthed face against everything from tables to books. He is increasingly demanding that we – or anyone – apply firm squeezing pressure to his trunk in the shape of continual, continual, continual hugs. He is revolted by every imaginable scent. He is increasingly touchy about removing his coat and shoes, and clutches them to him desperately. He constantly chews his fingers, and rubs his gums until they bleed. He is still pressing his head into the floor and holding it there, spinning around in circles, and ‘windscreen-wipering’ his eyes back and forth.
These things are frightening me. They are the sort of spectres that the combustible bundle of beautiful gelignite that is Harry, could become extinguished by. I want these to be meaningless toddler phases, not symptoms of a disorder that could swallow him. My gut (which has yet to suffer an ignominious failure of insight) tells me to worry like almighty Buggery Fuckington and Seek More Help; utterly alarmed out of all intestinal countenance, not by any single developmental difficulty or potentially ominous quirk, but by the sheer multiplicity of them.
and I need to remind myself that there’s a nihility of action-options open to me at 9 at night during the school holidays. I tell myself: we have a new Paed who is supposedly rather good with heads. Let’s meet her. Soon. Tell her how I feel. Learn more. Explore all the options. Keep Calm. Then panic and freak out.
Anyway. I was describing our Paed’s appointment. He gave Harry a sticker. Harry likes stickers, and beamed winningly, before recommencing Operation: Frantic Departure and swinging off the Dr’s coat hanging on the door.
This is likely the last time I will encounter the chap, so before I left I made a point of offering my hand and thanking him, again, for being there to save my son’s life in the very small hours of that memorable August night when Harry stopped breathing.
[There were three doctors present who struggled to stabilise Harry (a particularly difficult intubation, one of the Registrars later told me) when he turned very critical indeed. One was black as the beautiful African night, the other was - I believe - Pakistani, and the third was a Sikh. And that, among other equally heartfelt reasons, is why that fuckwit Griffin can bite me.]
On a slightly more up-beat note: whilst reading all the hoo-ha about the new iPad earlier this week, I suddenly had a primordial vision regarding the exciting potentiality of touchscreen interactive devices for people with special needs. I kid you not, I felt as if I’d just birthed a new theory of relativity that even explained gravitational motion in uniformed aunts. Really keen observers might have seen an cartoon light bulb flashing above my head.
When you’ve finished pissing yourselves laughing at me – I’m always late to parties, btw - tell me if you happen to know anything pertinent about pre-schoolers using an iTouch successfully? By successfully, I don’t necessarily mean figuring it out. I left the room for a pee earlier to find on my return that Harry had rummaged out an interactive kids’ disc, opened the tray on an external hard drive he has never seen used, inserted the disc, and clicked past the welcome page. In-between vomits, this was. He also turns the TV on, selects his own DVD if permitted, opens the tray, loads it, presses play… want your new hardware installing? Harry’s your lad. I suppose I mean: successfully showing an appreciation that it is not entirely a toy. And not killing it stone-cold pricey dead by dropping it.
School Fabulous are keen to start Harry off on PECS and the thought of lugging the folder about had been depressing me hugely; although I know he’ll pick the system up beautifully, it’s not an attractive option in practice. I’ve seen the future and I want one.
Can we come and practice on yours?