Lots of Nutshells

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 https://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
Wordle: Tonight's Thoughts

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?

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28 Responses

  1. Once again convinced that you should command armies. This is all so confusing, scary, and frustrating, and yet you are keeping things in motion, pushing med staff for progress, and organizing and recording details like a house afire. It all sounds desperately scary, Ann, but between your strengths and Harry’s clear native intelligence, I feel this faith that you will get the assistance you need.

    (PS: A month? A monthlong campaign season? That is both beautiful and…wrong. Just wrong. How will candidates generate the proper sex-tape-love-child-bribery-illegal-nanny scandals given only thirty days? Do you Brits care NOTHING for your gossip rags? Sheesh.)

    • Have I ever told you that John once remarked that I was a ‘great loss to our armed forces’? He paused for a short time before adding: ‘of course, you’d be shot inthe back by your own side…’

  2. The first word my son could read was “downloading”. I think some kids just have a sense for how techie things work. They will be the ones designing them in the future. (My daughter, however, age 6, struggles with anything beyond the volume control.)

    There is so much in this post, that I couldn’t think of any comment that would make any sense, so I just talked about my own children instead, which is pathetic. Sorry.

    I think you really deserve those nominations. You are funny, clever, and inspiring in your blog.

  3. Wow, Harry sounds extra keen with the electronics. That’s great! I think you are so right that the iPad, or something similar, could do wondrous things for opening up communicative doors with him. And that in turn could perhaps help with some of the tantrums and other issues you and he have struggled with.

    My son is just 3 (neurotypical) and is really very good with both the Touch and my husband’s iPhone. He knows how to navigate to different applications and work with them. As you said, he hasn’t got it all figured out, but certain things (navigating by swiping, for instance) he sussed out on his own, much more quickly than we expected. Harry sounds his superior, if anything, with electronics, so I would think he would do equally well. With the Touch/iPhone the size is a little small, but of course the iPad would completely surmount that issue.

    These things are prone to dropping, but they make tons of silicone cases for the Touch and iPhone, and I expect the iPad as well, so I think that’s not too much of an issue.

    By the way, aside from nobler enterprises, the Touch/iPhone are FABULOUS child entertainers/distracters (-ors?) and there are lots of wonderful kid-friendly apps out there–kaleidoscopes, virtual aquaria, collections of animal noises, music-making of various sorts, etc. etc. Also LOLCats, he really likes the LOLCats. Many’s the early morning we’ve blearily stuck an Apple product in his hand so we could catch a few more winks while he sat there in bed feeding fish in the Koi Pond. Which is not to be sneered at–I know you probably don’t need convincing!

    As to the rest, I am frustrated by my inability to even put words to the feelings your posts evoke in me. Earlier I linked you to Rob Rummel-Hudson’s site and I hope archives might prove useful: his struggles to have their daughter diagnosed, and his evolving understanding of her capabilities. But every child and family is so different, maybe he won’t strike a chord at all.

    I just want to help, so much, and there is nothing I can do, except to say that I am still here and still listening. That I think Harry is beautiful and wonderful and I want very much for him to be OK. I think he’ll be OK. But it must feel like a sword of Damocles hanging over you until you get a firmer grasp on this nebulous assortment of symptoms, what it means.

    I’m glad your pediatrician finally listened, and I hope they make an appointment with the new one very soon: please do kick and scream if they do not. In fact, poke them in the eye and tell them it’s from me!

  4. P.S. I forgot to say, my son has been playing with the Touch since early to mid-2s; though he’s better at it now, his skills sufficed even back then.

  5. That’s wonderful to hear. I know you still have no answers, no label and no treatment plan, but he listened and put you and Harry on the next step to what will hopefully be enlightenment. Keep writing those lists and hand them over at the next appointment – maybe even before talking about Harry’s quirks and problems.

    The iPad sounds as though it would be a great tool for Harry and I hope you can manage to obtain one. Anything to help his communication skills has to be a plus, and this would no doubt keep him entertained too, distraction is a huge help in warding off tantrums.

  6. I am so pleased that you are getting somewhere. Even if it is painfully slowly and frustratingly. You are doing all the right things and I am so awestruck by your ability not to go postal and kill everyone out of pent up rage and fear. You are doing brilliantly. Keep fighting and hang in there.xxx

  7. good to hear that some progress was made.

  8. There may even be a PEC’s app for the iPhone/iPad/iTouch.

    I know it has something similar from a friend who has a little boy with Down’s syndrome.

  9. In fact there is, just google PECS in the Store, £22.99 so not cheap, but definitely more portable than a folder!

  10. So glad to see there is progress of a sort and H is now on the right lists to get his MDA. It is frustratingly slow but you are a great advocate for him and the help will come because of that.

    I think the i-stuff idea is a great one. There are stacks of great educational games and it seems to come naturally to most toddlers. Prices for the phones have come down a lot so you may be able to upgrade at relatively little cost.

  11. It occurs to me that there may be an advantage in not having a diagnosis, because if you don’t have a diagnosis you won’t have a MISdiagnosis.

    If I think I’ve got an Orange, (orange coloured, tough skin, flesh in the form of triangles when you cut it across the equator, lots of sticky juice, full of vitamin C) I might miss the fact that it’s actually a Persimmon / Sharon Fruit, and waste time trying to split it into segments rather than eat it with a spoon. As it were.

    So I would consider being *grateful* for the lack of diagnosis, because it will stop them missing things that are obvious because they don’t fit the diagnosis.

    Otherwise you are so right. The slowness of it all sucks.

    Ben
    PS – coted for you in the blog awards, obviously, but that is the best of Wordle I’ve seen this year.

  12. I have been and pasted (can you do it more than once?) – hoping my young artist colleague will have a iPhone to occupy his mind before too long.

    I am so sorry for this stress the bright and wonderful HFF is suffering. I wish it wasn’t so – and I hope for good, calm times to come, SOON.

  13. I voted not coted. Not sure what coting is, but I’ve never done it.

  14. I’m very distressed by the thought of compulsory 4 year terms as they seem keen to bring in – I too love the brief campaign season.

    As you know, I’m not a massive fan of unwieldy communication systems that don’t involve practicing the motor skills that are impeding spoken language – I think they are only worth it for “can’t speak, won’t speak” which Harry is clearly not.

    Anyway, on to important stuff. It has come to my attention that someone is selling vacuum-packed grey squirrels at your local market town’s market. I wish to have immediate confirmation of this. Preferably with photos. I won’t make you buy and eat one.

  15. (and, re diagnosis, they are just labels useful for researchers to beat other researchers over the head with, what is most helpful is current abilities in a variety of areas and how these might be pushed into future abilities).

  16. I’m glad you’re making some progress. I know you would like things settled, so you can then form A PLAN, but you might never really get there. Harry may just have a variety of different issues, with no overall syndrome/disease/label to make it all easier. It sounds, though, like he takes information in very well. If he understands words, ideas, and concepts, then you could probably lay down some of your worries, because you and he (and possibly a team of doctors) will figure out how to overcome his current inability to get the ideas back out.

    Why, from your description, am I picturing Harry in some sort of Power Rangers suit? Helmets and boots and lycra…

  17. I’ve read that the iphone/itouch/ipad has been immensely useful in helping children with dev. disabilities/sensory “stuff” in making transitions. One thing that seems to work well is making a picture series of all the different small steps in a transition (say, getting Harry to leave Special School and come home) that can be run through numerous times in preparation for the event or during if a meltdown occurs. So you might take a picture of his coat, him getting on his coat, the door exiting the school, your car, his carseat, him in his carseat, and on.

    You are being a great advocate for your son. The best thing he has going for him is that he has you as a parent.

  18. I have nothing constructive to add here but am thinking about you and wanted you to know. I am dizzy just reading about all you are faced with and don’t know how you manage. Best of luck with the Keeping Calm and Carrying On.

  19. Oh, my dear, I am glad glad glad to hear that things AT LAST seem to be going in the correct direction for our young lad. Slowly, of course, but at least moving.

    I’d send you my iTouch but as we know it recently had a hot date with the clothes washer. Courtesy of my _husband_ and not either of the children. Sigh. When you get one I’d worry more about keeping it safe from a laundering spouse than a butterfingered toddler. My kids both love to play with it- I’m sure it would be very useful in many ways for young Harry.

  20. Oy vey, the WAITENING *screams, bites fingernails*.

    Hug hug hug hug hug hug. You did good. You are brave and wonderful. I know it’s absolutely no comfort whatsobloodyever to be told these things ALWAYS take ages. GAH why SHOULD they take ages GAH GAH GAH AND ARGH. See? All frustrated on your behalf.

    Hope the icky sicky is leaving you alone. I hope it muchly.

    iPad/iPhone in a nice big silicone/rubber cover. Then they practically bounce when dropped.

    (If Harry likes to be squeeze-hugged, do you think he’d find the lycra suit thing comforting to wear? Diva had/has a similar thing. Even now she likes to sleep in several layers under several duvets. She says she likes to feel the weight on her. So, if you do get the suit, it may ‘suit’ (hah hah hah) Harry down to the ground. Fingers crossed. But, my dear, they are never UNcrossed on your and Harry’s behalf).

  21. I voted for your very inspiring blog (which gives you an indication of where I voted). You are a genius in thinking about the new IPAD and speech tools — here’s a blog of a person you might have things in common with — he just posted about the IPad too (what a horrible name, by the way!)

    http://www.schuylersmonsterblog.com/

  22. A friend’s three year old daughter who has vision and speech impairments uses my ipod touch, and she has no problems navigating around it (I was worried that she wouldn’t be able to see the icons, but she has no problems). She loves it, and will ask for the ‘pie-pod’.

  23. I would worry tremendously about the cell exposure of a child handling an iPad with (presumably) wireless connection. Dirty electricity and all that jazz.

    http://www.theinfounderground.com/forum/viewtopic.php?f=18&p=40697

    We have Tremendous Waits here in NowheresVille, Ontario Canada…. some people travel south to America and get in to see specialists, immediately. Not sure if there are any private options like that near you, though I am sure if you are, you’ve probably considered it by now!!

  24. Quote I was looking for in that article:

    “If there are risks, and we think that maybe there are, then the people most likely to
    be affected are children, and the younger the children, the greater the danger.” Sir
    William Stewart, Chairman of the UK Health Protection Agency, issued this statement at
    a press conference in 2005. He went on to say that no child under the age of nine should
    use a cell phone, and anyone under sixteen should use one only for emergency calls.

    We don’t know what the long-term effects of cell phone radiation are to children. Tumors
    can take 15 to 20 years to develop and by then it’s often too late to treat. We must ask
    ourselves if we want our children to participate in this giant experiment. Certainly,
    protection, prevention and limiting exposure is a must until science can confirm the
    danger or confer safety on these products of convenience.

    Evidence in medical science continues to mount that radiation from devices such as cell
    phones, cordless phones, and WiFi produces dangerous and damaging health effects. The
    time for action is now.

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