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 now, now, I’m stupidly agitated with pounding heart and rapid breath, and my brain looks like this
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?
Filed under: Parenting | Tagged: Paediatricians, School Fabulous, The MADS | 28 Comments »