Monthly Archives: June 2009

The Day of the Three Things

The title of this post, by the way, is an extremely obscure reference.  Full marks to anyone who gets it.  Anyway, our particular Day of the Three Things went very well.  Details as previously promised:

Thing The First.  The TISM, down at Jamie's soon-to-be-new school.  This was due to start at 9.30, giving just enough time for us to get Jamie to nursery and ourselves and Katie down there.  Also present were Manda and Jane from the nursery; Mrs K., Jamie's soon-to-be-new teacher; Sharon, the area SENCO; and someone whose name I've forgotten, who was SENCO for the school, if I remember rightly.  We all squeezed into a tiny room just opposite reception, with a box of toys that Katie played with happily while the rest of us talked. 

Sharon started out by going through Jamie's strengths, of which there are many, and the nursery staff talked about what a lovely little boy he was and how much they were going to miss him.  She went on to discuss things that had come up at the LISM last December as being problems and what we'd done about implementing some of the solutions discussed then, such as the use of more visual prompts.  Although Jamie understands spoken language perfectly well, he does, like most children on the autistic spectrum, respond well to visual prompts such as little pictures showing him what comes next in his routine, so Barry tried a couple of those last winter – one giving the sequence of getting dressed, and one showing which nights of the week he had showers and which nights baths (at the time, Barry was putting him to bed five nights a week and he had showers on those nights and baths on the nights I put him to bed).  They're both now obsolete (he no longer has to wear a nappy during the daytime (hooray!) and thus that part of the getting dressed routine no longer applies, and he now has a bath with Katie every night), but they did seem to help at the time.  Manda also tried using a 'surprise card' with him (a little picture of an exclamation mark) to give him warning when something out of the ordinary was coming up.

The biggest current issue is the toilet training.  Jamie has (after a long slow struggle) reached the point of doing really well with staying dry during the day, but still hasn't really figured out how to poo on the toilet.  This is not a terribly uncommon problem for autistic children, and can be due to them not interpreting their bodily sensations in the same way – I think he just can't tell when he needs to go.  As you can imagine, this is something of a problem.  At the time of the TISM, however, it so happened that there was light at the end of the tunnel – the weekend before had actually been one of the very occasional times when he did manage to poo on the toilet, I'd run round looking for a suitable reward, Barry had produced some gold star stickers, and the fascination of watching us snip off a piece with exactly three gold stars on it and then getting to peel these off proved to be sufficient to motivate him to do the same thing several more times over the course of the following week.  So we may be getting somewhere.  Or we may not, since he's since then had several non-successful days and it may be that the fascination of the Gold Star Stickers has worn off.  We shall see, I guess.

Other than that, I have no worries about him starting school, and think he's going to love the place.  We talked to Mrs K. about some of the things that make him tick.  When he's getting a bit overloaded and needs a few seconds time-out for himself he'll shout "Loading!" and insist on a few seconds of counting to himself before he can go on.  ("I'm loading!  You shouldn't interrupt people when they're loading!" he told me very indignantly once when I'd unwittingly asked him to do something-or-other.  Clearly I'd committed a major etiquette faux pas.)  The others were delighted to hear that and all commented on how great it was that he'd learned how to do this to give himself a break when he needed it – Jane pointed out we could probably learn a lot from him.  We also warned her of the importance of warning him of any changes in plan – it makes an enormous difference to how well he can cope, even if he's only warned a couple of minutes before things happen.  What helps hugely here is that he understands how dates and calendars work, so it's easy to warn him in advance of things that are going to happen (as, you will recall, I did with the Day of the Three Things itself). 

"But you need to be careful if you've got a calendar on display," Manda warned Mrs K.  "I once looked up and saw him balancing on the back of a chair, and when I called out 'Jamie, what are you doing?!' he looked at me and said 'Manda, this calendar still says March, but it's April!'."  (Ah, yes.  I have also had this experience.)

The person whose name I can't remember asked whether Jamie had any special interests that particularly fascinated him ("Numbers," we all chorused), and whether he had a tendency to run away when things upset him (not usually, but he can get it into his head to take off somewhat unexpectedly, a longstanding issue for us on shopping trips).  Barry also asked whether the school computers had the CBeebies site on them.  "Jamie's worked out how to log into live television from that site" he explained.  "He works out lots of stuff like that, just fiddling around.  He knows how to change the desktop picture on his computer and he does that every few days."

"Sounds like you're going to need a surprise card," Sharon concluded to Mrs K.


Thing The Second

The educational psychologist arrived a little while after we got back.  She talked about her morning with Jamie, and was very pleased with his reading and number abilities.  She asked us several questions about various aspects of his development, and warned us that he isn't likely to qualify for statementing at this point.  In plain English, this means we don't get any other extra funding for him beyond the lump sum already approved for the school, which is to be used for all children with special needs starting that school next term (there are four, apparently) and can be used/parceled out as the school sees fit.  If it turns out that he can't manage without extra help, we can apply for statementing then.  This will mean a time lag in getting help if there are any problems, but that can't be helped – I think she's got a fair point, and that Jamie probably would be turned down if we applied now, and that in itself automatically means a six month wait before you can apply again, so I think we probably are better off waiting to see just how things go in practice.

Thing The Third

I took Jamie to Big School, and, as I'd expected, he adored it.  He found a hanging display of numbers straight away and started reading them out.  Mrs K. saw him and came over, but by then he'd spotted the box of sticklebricks on a nearby table and charged over to them.  "Sticklebricks!  Here's a red one, a yellow one, another yellow one…"  After a few minutes of Mrs K. trying to chat to
him while he kept up his excited monologue about the sticklebricks (in which he did, though, address Mrs K. by name once, so at least he was talking to her), I showed him the finger sums on the wall, and he liked those as well.  Then he found a toy that had pieces of plastic with holes in that you could nail to a board.  Then he had to check out the computers and teach himself how a couple of the games worked (he found the year's curriculum in the process, but I steered him gently back towards the games).  A little girl came and played on the computer next to him and Mrs K. asked Jamie to explain to her how to play the Teletubbies game, which was one he knew from home.  And he did.  "First, you must click on 'Easy' or 'Difficult'.  Next, click on the arrows to guide Po down the hill.  Very good!  Well done."  He also found a three-minute hourglass-style timer on one of the shelves and played with that, and when I finally managed to get him out of there some time after the session was supposed to have ended he found the series of numbers painted on the playground for the children to play on.  "This one is a jumping pad, and this one is hopscotch, and this one… is a circle jumping pad!"  He had to jump on each in turn, of course.  I think Big School is going to be a success.

Meanwhile, I have been through the stack of forms provided to Barry at the first part of the induction, signing permission slips for our son to have his photograph used in school brochures/use the Internet/go on school trips/have cooking lessons/eat the things he cooks/get free milk.  I've filled in a detailed booklet about his abilities and likes and dislikes, completed a form saying what day we'd like the home visit that the teacher makes to all parents of new students in the first few weeks after they begin (yes, she does!  How good is this school??  Damn good!), and written a cheque to cover various random activities and school meals.  (Hang on a sec – just registered that fully in my mind, and Jamie isn't even going to be having school meals!  We send him with packed lunches.  Must remember to find out what money is due in that case.)  Now all I have to do is order his school uniform, PE kit, name labels, and the crowbar for prising the boy loose at the end of subsequent visits, and I think we'll be just about set.

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On this particular Thursday

"On Monday, 8th June," Jamie told me excitedly as he got ready for bed, "we will sing 'Happy Birthday' to you!"

"That's right!" I agreed.  (It wasn't, as it turned out – in the general rush of getting dinner done and presents opened and two children upstairs to get ready for bed, we all completely forgot about the singing – but it's still very touching to have your four-year-old son remember your birthday and do so with such gusto.)  "And  on Thursday the eleventh of June, we are going to do three things that are different from usual.  Can you remember what these three things are?"  I'd been through them several times already, but wanted to reinforce the plan as often as possible before the day; Jamie deals beautifully with changes in plan as long as he knows about them beforehand, but spring them on him and there's hell to pay.

"A lady will come to nursery," Jamie recited with careful concentration, holding one hand aloft (I think he meant to count the Three Things off on his fingers, but hadn't quite got as far as that in mental organisation).

"Yes, that's right," I agreed.  I'd been in two minds about whether to even bother telling him about the educational psychologist's visit, as I honestly don't think that the presence of a strange adult at nursery would be one of the things that would register on Jamie's Strangeness Radar as being disturbing and I was worried it would just give him too many things to remember, but I figured, what the hell, might as well.  It had been the right decision – he was remembering all three things without difficulty.

"And then everybody will go home…"

"After nursery is finished," I interjected hastily, with visions of him expecting all the other children to evacuate the nursery as soon as he'd noticed the educational psychologist's presence and thus registered the First Thing as being done with.

He waved me to silence.  "And Manda and me will stay at nursery and we might do a jigsaw or read a book.  And then Mummy or Daddy will get me and I will come home and have lunch…"

"…and maybe do some playing or watch a programme," I added, wanting him to have some idea of the timing of the whole plan – Jamie was quite capable of deciding it was time to set out the instant he'd finished lunch, and it could get a little tiresome to be fielding impatient shouts for action for the next couple of hours until it actually was time to leave.

"…and then Mummy and me will go to Big School!" Jamie finished triumphantly.

"Very good, little one!  You've got it."

And thus the conversation went, with minor variations, on each evening in the several days leading up to June 11th.

We also have Three Things concerning Jamie and his transition to Big School scheduled for tomorrow day, though not all of them will be the same things.  Our First Thing is going to be the TISM, or Transitional Inclusion Support Meeting, the meeting held between all interested parties when a child with special needs is due to start school in order to discuss what needs to happen to smooth his transfer and how it can best be done.  Some time after we get back, the educational psychologist, who will by then have spent the morning observing and possibly playing with Jamie, will come over to our house to discuss him with us (hence Jamie staying at nursery with Manda after everyone else has gone home, the plan being to allow us to discuss him without him being around)1.  And the Third Thing, of course, will be the one Jamie already stated – I'm going to be going with him to spend a short period of time visiting his soon-to-be-new classroom and teacher at Big School, as the second part of a three-part induction2 (which, unlike the other Two Things of the day, is nothing to do with Jamie's special needs but is the school's normal procedure for all children prior to their start date).  So that's the day's schedule planned out.  I shall update you in due course.

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1. Yes, this does indeed mean Manda doing overtime purely in order to babysit our son, and, yes, she volunteered.  It would not surprise me terribly at this point if I were to go into nursery to find that it was bathed in a pearly iridescent glow and the staff had all grown haloes.

2. Part The First was for a parent to go along sans child for an evening meeting a few weeks back, and Part The Third, in natural progression, is for child to go along for a few visits there sans parent.  Barry, who was the one who got to go to the parents-only meeting, came back with a new school bag and various paperwork and leaflets about this and that and told me that he'd met Jamie's teacher-to-be and various other people and been shown a short film about packed lunches.  The film was sponsored by some group like the Flour Appreciation Society or the National Coalition of Flour Producers or something of the sort.  It put heavy emphasis on bread products, with a brief branching-out into pasta.

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Patchy

Jamie had his latest orthoptist appointment last Wednesday.  I must confess here that I'm actually an appointment behind, since he had one in, oh, probably about last March that I never got round to recording here.  Not that there was much to say about that one, but it was the next one after the September appointment in which we had been advised we could try stopping the patching again, and the appointments after no-patch periods are inevitably tense moments as we wait to see whether we can continue with the non-patching or whether it will have led to Jamie's weaker eye deteriorating and whether we'll have to start up again.  Fortunately, at the March appointment, the former was the case – the orthoptist (a different one from usual) declared Jamie's eyes in good enough condition to remain a patch-free zone, and I got to breathe easy again. 

Having done my tenterhook-hanging on that occasion, I didn't worry about this one at all, having rather foolishly assumed it would be a mere formality; I was therefore a touch blindsided (if you'll pardon the unintentional pun) when Barry reported back to me that we're now back on the patching regime again.  For two hours a day.  Oh, well – it's going fairly well for the time being.  Jamie does still pull glasses and patch off pretty frequently but submits to having it put back on again, so we seem to be OK as long as we keep a close watch on him.  With a bit of luck we should get it down to an hour a day by his appointment next September, which would be good considering he'll have started school by then and we'll have that much less time each weekday available for patching.

Speaking of appointments I didn't blog about, there was also his last appointment with Dr M., which in fact wasn't with Dr M. when it came to the point – that one was Friday 6th February, which turned out to be the end of a week of country-paralysingly heavy snow, and Dr M. ended up getting stuck in the nearby city with all the clinic notes.  His clinic was thus taken that day by Dr H., a colleague of his armed with only the brief summaries on each patient that Dr M. had managed to pass on to her in a hasty phone call.  In Jamie's case, the brief summary was apparently that his ASD had been diagnosed last August and that I was a GP.  Dr H. was a cheerfully breezy woman who was quite a contrast to Dr M. in personality – she reminded me of an enthusiastic and good-natured headmistress – but she was just as pleasant as him, and took Jamie's climbs all over the consulting room (not the formalin-smelling one on this occasion, at least) in good part.  She asked us about his sleep and eating and the progression of his toilet training and various other things which I forget, talked about getting him statemented for school, and recommended some parent training days on autism which neither of us have actually got round to getting to at any point.  That was about it.  We now have a slew of school-related stuff coming up this Thursday, so at least I'm briefly up to date on my reporting of appointments before falling behind again.

And now, dear readers, I seek your input.  I always meant to set up a specific category for autism-related blog posts as soon as Jamie's diagnosis was formalised, but never actually got round to it until, well, now.  So, given my penchant for obscure and quirky category names… what should I call this one?  I'd like to go for 'Spectral' (as in autistic spectrum disorder – geddit?), but that might be too obscure for people visiting the blog.  'Adventures in Autism' might be good if I hadn't already gone with that theme for the category of squint-related posts, but, given that I already do have a similarly-named category, I fear it would look repetitive.  Should I go with 'Spectral'?  Or does anyone have any other ideas?  And, while we're on the topic, do my current categories make any sort of sense to anyone apart from me, if the answer to that one is 'No' then is anyone troubled by that, and would anyone like a 'Guide to Sarah's Bloggy Categories' post at any point?

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