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 This is almost everything I found that was out of date, often by an impressive 4 or 5 years.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.

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23 Responses

  1. Well that just sucks all KINDS of vile things, now doesn’t it? Balls. ARSE. Etc. I think you’re right, though. Monty’s has to go. Harry needs Portage and Avondale sounds too good to pass up. But…BALLS. And, you know. Arse. Etc.

    I’m sorry you’re having to kiss that Italian vacation goodbye, too. Holland seems to be full of some of the very best people *puffs chest out* but you still don’t see people lining up around the block to come here voluntarily, do you?

  2. I’m with the above commenter. It sounds like you’ve mostly decided. Bit it still bites, big time.

    And in the hopes that this helps you stop kicking yourself re: not understanding Harry’s spoken language- my son Buddy isn’t much younger than Harry (he’ll be 2 in mid-January) and I JUST started understanding some of his words. Like in the past 2 weeks. There’s a huge range in when it clicks with them. Of course I think you’re doing the right thing to get him all the help you possibly can, but don’t despair. Few parents speak toddlerese. I certainly don’t. I am supremely confident that very soon Harry’s brain will sprout a bunch of new neural connections between sound formation and getting what he wants (NOW)!

  3. Not just horns, antlers. Your last sentence but two sums it up beautifully.

    Good luck with the decision, and know in the future that you took the best decision now, given the knowledge you had at the time and the circumstances you were in.

  4. PS – I once took a load of comestibles straight from my Ma’s kitchen cupboards to Peter Opie’s museum of packaging in Gloucester. She was a woman who put the decayed into decades.

  5. Ick. That is a connundrum. I think you have already made the decision, but can’t you change your mind in a few months if it doesn’t work like you expect? He’s only just 2.

  6. Agreed with MFA Mama and Ben Warsop. As I read your words about Avondale I thought oh, Harry needs to go there. Then my heart sank with you as you worked through all the logistics.

    I offer this up, though. Avondale sounds as if it’s both care and therapy rolled into one. One would hope they’ll help him to improvements in both behavior and communications (I suspect the two are linked?). Plus, regardless of what nationality your child is (so to speak) care does wonders for socialization, over time. If he’s doing better, the corresponding decrease in your levels of worry and stress might leave you feeling a lot more energetic and getting more done even if you have less time. Or at least better about not getting more done. Maybe?

    My heart aches for you when I read your feelings about not being able to communicate better with Harry. I’m just a stranger on the interwebs but he sounds like he has so much going on in his head, and I wonder how many of his tantrums are due to sheer frustration. As just a reader I want so much for you and he to be able to talk; so I can only begin to imagine how you must feel. Warm hugs.

  7. There’s no choice, is there? My God, it sucks, but you’ve no choice (BASTARD RULES DAMN THEM TO HELL). How can a loving parent NOT screw up their own life and work for the sake of the best thing for their child? Pissing wanky cunty bastard tittyfuck indeed.

    Poor Harry, I agree most of the spectacular tantrums (hey! Spectantrums!) are due to the fact he can’t simply say ‘I want that one.’ (Mind you, most toddlers get a bit yelly even when they CAN say ‘I want that one’ and Mummy still has to say ‘no, dear, you can’t play with the cleaver.’).

    I did have a little cry for you/with you. Here you are with this adorable lively intelligent child, and you just can’t talk with him. My heart hurts at the very thought. I’m trying to remember at what age Diva first got a grip on this talking lark. She could definitely make herself understood at three, but her speech was very unclear for a long time, to the extent that we all thought she was deaf for a while. My step-Dad used to get so angry about it. His child, his only child, and she needed SO MUCH HELP (his issues also had to do with his older siblings’ beautiful talented cello-playing gymnast children who were perfectly articulate from bloody birth).

    As for the kitchen cupboards. Um. You haven’t seen mine. My triumph was a packet of suet we brought with us to this flat from the old one SIX years ago. I was just about to make steak pudding with it when I looked at the date. And had a frantic I-daren’t-remember-when-I-last-made-pudding moment before binning it. We had stew.

  8. Oh my dear HFF. You deal with so much all the time, and only in posts like this do you let it all come through, how tough it is, how much fighting for your child you have to do, and how limited the rewards are. I wish things were easier and I do so hope that these services will start to make a more substantial difference.

  9. My heart goes out to you. What a terrible bind.

    It looks like you’ve made your decision but really, SUCH a pity not to be able to go to both places and retain Portage services. What BLITHERING IDIOT made that up? Don’t they realise real people are being affected by this? [Blood boiling].

    Come on Avonvale, help our HFF. Be the right thing.

  10. Oh dear gad.

    My head hurts reading about them rules.

    Much as I am an avid follower of Rules on most occasions, those ones positively blow.

    Also, I cannot imagine how much it much ache to be reminded of the dreaded D word.

    g

  11. Such idiotic rules. It does sound like you’ve made up your mind and hopefully with more early intervention coming soon Harry will be ready to return to your local preschool by next year.

    Might it be possible to scout out the other parents at Avonale and see if any of them would be interested in watching Harry for an hour or two after class one day a week? That might give you enough time to go home and get some stuff done, and presumably the parent would be a bit more clued-in to Harry’s needs than the average parent. I’m guessing even 2 hours a week home alone might help your sanity significantly.

  12. Pissing wanky cunty bastard tittyfuck, indeed. Eloquently stated and a very handy expression, might I add.

    Is there anyway you could market your wares (not THAT kind of wares) while waiting for Harry at Avonvale? Or would that, due to being over the county border, cause all kinds of taxation or other kerfuffles?

  13. I am confused as to why Portage refuses you more than two daycare sessions per week. What do they do, then, for parents who work? Refuse them care? That does indeed suck clown balls. But Avonvale does sound potentially very helpful.

    You have great fortitude, Missus HFF. It must be terribly hard to hear the “D” word, even if all that lies ahead is a brief layover in Holland while Harry’s neuro-speech-cogs start to mesh properly. Which they will, dammit, they will.

    I’m off to order some lovelies from the other part of your site now.

  14. What a head fuck. You seem to be tying yourself in knots, running round in circles and any other cliche you like to insert here.

    I think you know what you want to do about daycare, so go do it.

  15. yikes. that’s my articulate response to this. and sympathy.

  16. Hot damn, what a choice to have to make. 😦 I like what MFA Mama had to say, all of it.

    And what you had to say about being in Holland after thinking that perhaps you might have just been more West Germany made me cry. Oh how I wish something would give for your small family to make it all easier.

    xoxo

  17. Stupid rules.

  18. Hi,

    I just kind of stumbled upon your blog and was admiring the cake pictures, so I don’t know any of the background on your son. However, I thought I might tell you about our experience. My son has Asperger’s syndrome which is high functioning autism. He had problems with tantrums and lashing out physically between the ages of 1.5 and 4.5 (worst at 2). He resisted potty training until 4.5. He has now learned how to control his emotional impulses better and goes to a regular kintergarten, but with an aide there to help a bit if he needs it. His intelligence/speech is normal. But there were 2 years (1.5 – 3.5) when we could not have him in daycare/preschool, because he was miserable there and wouldn’t interact with anyone. At that time, we didn’t know what it was and were trying to find a doctor who could help.

    Even though it may be something completely different or nothing, I think some of these suggestions might help. I would suggest developing some coping strategies to have ready for challenging behaviors. If you have a plan in your mind for what you are going to do, it will be easier to respond calmly. It is best to be very consistent in your interactions with him, try to avoid known triggers of tantrums, watch his diet (have him eat protein each meal, don’t go too long in between snacks/meals), and get onto a schedule. With our son, it is really hard to get him on any schedule initially, but after 2-3 weeks, he embraces it completely and is so much happier. Giving up his nap at age 3 (which he fought every time) and instead having a strict bed time made a big difference. Also, he did much better going to school 5 days a week than 2, because of the predictability/routine. If we can, we always let him know ahead of time what’s coming up next. He doesn’t respond well to surprises, but if he is told ahead of time, he is okay.

    Your son is adorable by the way!

    Hang in there, it will get better.
    Cathy (from Canada)

  19. I’ve had to wait two days to find the words to respond to this post. And here I am still speechless. I may appear a mild mannered, well brought up individual (well, perhaps not to other residents of Villa Kore) but I am Pure Bolshie underneath and I so want to jump on a plane and ask the bureaucratic fuckwits that run a bloody stupid system that would do this to mothers and babies that they are there to help, what the bloody fuck they think they are playing at?

    Because Rules? Nine times out of ten they are just there to be broken.

  20. Bummer about all the bloody constricting rules. Cold consolation might be that I’ve known quite a few families who were eligible for free birth to three services in the U.S., but by the time they reached the top of the wait list, their child was older than three and no longer eligible.

    About the Italy and Holland book and metaphor — yes, it seems that every parent with a child with special needs or who shows the potential of developing special needs in the U.S. is obligated to read it. I like to think of it more as traversing bordering countries, like Italy and Switzerland, and perhaps Harry is a Tyrolian right now! Lots of kids pass back and forth between the two countries at different times, or in special areas or circumstances, and, being members of the EU, they don’t need special visas or anything.

    I have faith that Harry can outgrow his current language difficulties, don’t ask me why. There is a blogger I sometimes follow who writes about his daughter’s speech delays due to an organic brain issue — the microcephaly crowd has embraced him as one of their own, although her diagnosis is slightly different.

    http://www.schuylersmonsterblog.com/

    After blogging for a while, he was approached by a publishing house to write a book, which I’m sure will happen to you someday soon too! The book is pretty decent.

    Cograts on your chapter, by the way! Had some fake sugar-free alcohol-free champagne on your behalf.

  21. It seems you know what your decision will be, it’s just reconciling yourself to the inconvenience. Maybe the time in this program will make Harry ready for the local primary school. However much the commute is a pain, I think it will be much nicer for you both for Harry to go into a program that he likes and appeals to his needs.

    Is there any chance you can find someone to mind Harry for 1 or 2 mornings?

  22. Coming to this very late. It seems totally bizarre to me that the Portage people care how many daycare sessions Harry has. Assuming you are paying for them and they aren’t part of a subsidised care package why should they a) care or b) know. Fr al they know you could be paying for one on one tuition from a specialised professionals on the days he isn’t at Montys and would that count against you? General ranting and crossness on your behalf aside I would go for however many days as possible in one place on consecutive days. From the sounds of things at the moment that place is most likely Avonvale. If Harry knows the village kids he will be at preschool with and plays wit them that is half the acclimatisation battle over with and he can get that sans Monty’s cant he?

    PS lovely to meet you the other week and it was good to have a laugh at all those diaries.

  23. […] reports… all the support, in fact, that would have made a world of difference to me a year ago when I felt alone with Harry’s problems. I found the delay in instigating Harry’s formalised assessments profoundly frustrating […]

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