Speech therapist number 5

Boy Lacer has speech therapy yesterday, with speech therapist number 5 (he never even saw number 3), as you can imagine, considering that we have only seen each speech therapist he’s had since leaving the hospital based speech therapy clinic and gone to the community based speech therapy clinic once (if that), I am not filled with the greatest of confidence that we’ll ever see speech therapist number 5 again.

Speech therapy is proving important at the moment as Boy Lacer starts school full time in September and I think he needs a statement (for those who don’t know the system or those outside of the UK, a statement is the amount of money the borough will give to the school to provide extra support for a child with special needs). His ex-physiotherapist thinks he needs a statement but I sensing speech therapy aren’t so keen. Thing is Boy Lacer is more than just a social communication skills problem, he has a physical disability with his hypertonia and has occupational therapy problems with the difficulties in toilet training him being the upper most but not the sole thing on that list. But if you look at it just from the social communication skills area, ok, he’s never going to be an ‘average’ 4 year old but his vocabulary is now quite good (although his speech is still not clear) and he will interact with people (although far better with adults or children younger than him, not good with children his own age, who I suspect are confusing creatures to him that he can never keep up with in play). As I said the physio thinks he needs a statement but she’s now his ex physio and doesn’t work at the clinic anymore (in fact I suspect she’s gone back to Australia), he was dropped from the physio list when she left, principally because he gets a lot of physio work at nursery and responds more willingly there than he did at the clinic. As for occupational therapy, they are next to nothing useless, in fact worse than that, I get told the occupational therapist has left and they’re waiting to hire new people, I then find out occupational therapist never left at all, I then have to resort to begging answer phone messages, invoking the name of Boy Lacer’s school (I think it always helps to invoke the name of another professional body when it seems you, the parent, is getting ignored) and I eventually get a occupational therapist to come out and visit Boy Lacer at nursery, where she writes a report which seemed to hardly recognise his problems at all and then he gets dropped from the OT list. As for the paedtrician, the person who is meant to be coordinating all of this, well we were meant to see her in January, no appointment, I ring in February “Where’s my son’s appointment”, I get told that because of the moving of the children’s centre (you know the one I mentioned in my orthotics post), appointments were running three months behind schedule, so that would make it March sometime, well we’re running out of March (guess who’s on my to call list today).

Last Physio

Boy Lacer had his last physio today, it was a home visit from the lovely Australian physio he has a complete and utter soft spot for, as soon as she walked in he went into alpha nerd mode, desperate to show her, in his words “We have everything here, two computers, except one doesn’t work at the moment” (Mr. Lacer’s computer’s having some network problems, we actually have 3+ computers, I think Boy Lacer was forgetting about mine when he was showing off and there’s Mr. Lacer’s work laptop to, that usually stays here, so in a minute, when I’m off here, I’m going to have to lend Girl Lacer this laptop, as being restricted to actually sharing one computer *shock horror*, they’re in danger of killing each other).

He did some walking and stomping exercises, the physio uses one of those musical mat things you walk on which you can get from ELC, which we happen to also have and one of those soft rockets, which you stomp on and the rocket goes flying, I’ve just ordered one of those from Amazon, that helps encourage him to stand on one leg and helps improve muscle strength. All in all though, he’s a lot more cooperative when at home (last physio appointment at the children’s centre, he spent the whole time trying to hide behind me) and he’s getting a lot of physio style work at nursery anyway (A-frame work, trampolines, steps, balancing), so no more need for physio (and the lovely physio is about to leave anyway). It was interesting getting another professional’s perspective on whether Boy Lacer needs a statement; his speech therapist reckons he may not get one as he’s ‘doing almost too well’ to quote, as (and I think largely due to early intervention) his speech although still a bit unclear and patterns of phrasing sometimes ‘odd’, his vocabulary, considering everything, is now quite good, however obviously the speech therapists opinions about statementing him is based on his communication skills, the physio, thinking about his physical skills definitely thinks he should be statemented. Personally I definitely think he should be statemented, but it’s all down to money these days, but if I were to be ruthless and thinking just of my local LEA’s purse strings, I definitely think they need to statement him now, as giving him the support he needs now, as he learns such important basics as reading, writing and numeracy, may mean that further down the line, whilst he still has troubles, he may not need so much help, as at least he’ll be able to (hopefully) read, write and do maths, whereas if they let him flounder now, he’s going to need much more support throughout the educational system, for his whole academic life. I think Boy Lacer is a fairly smart boy, but he is (to quote nursery) ‘unpredictable’ and difficult to keep on track, he’s also very stubborn and will do his best to get out of anything he doesn’t want to do (which is most pre-school style activities, that don’t involve a computer). Anyway, the physio will write a report to say that he at least definitely needs one to one support for PE, which I hope he at least gets that, as PE is a big worry.

We also talked about the pains in Boy Lacer’s feet, we had seen the GP about them but he was fairly useless, saying there was no apparent reason for them, whereas according to the physio, lots of children with low muscle tone problems have pains in their feet, now the GP could have said that . . . I do worry how his low muscle tone is going to affect his skeletal system as he grows older, I can imagine things rubbing where they shouldn’t.

She checked out his legs and noticed the cyst on his hips I’d told her about, looking particularly inflamed today, by chance and it reminded me that (another) GP had said to go back and see him about it again in two months time and that was two months ago, so have just made another appointment. I have also made an appointment for orthotics, to get his boots and inner soles checked and rang and asked about his next consultant’s appointment, which should have been in January, but wasn’t (according to the receptionist, they’re doing January children now, so should get an appointment in the next 6 weeks).

Finally the physio said I should check to see if the school offers the Jump Ahead program, I will check that.

In a good mood

Today was the day of Boy Lacer’s postponed (because he was ill last time) parent’s evening, although I say parent’s evening, it was in the afternoon and they’re not even called parent’s evenings when they’re in the evening, they’re called parent consultations these days. Anyway, whereas I have two years of parent consultations with Girl Lacer under my belt, which always tend to go along the lines of “She’s doing well in this, this and this” and “She’s almost married to S isn’t she? How long has she known him?” (S is a boy in her class who she’s known since she was 2, although they’ve drifted apart a little since year 1). I always knew Boy Lacer’s parent consultations would be very different, for a start there were a lot more people involved today; the inclusion manager, the nursery teacher and one of the nursery nurses. There was a lot more planning involved, discussions of therapists, mutual shock at the current situation with the lack of occupational therapy and happiness with the physio (I told them how happy the physio was with how Boy Lacer had improved since starting nursery). And overall a lot of happiness from me, that he is so in the right place, the staff are so experienced and the whole ethos of the school is wonderful. Before seeing the place I’d have never of thought that a high academic achieving school would also be so excellent with their special needs care and I think that’s because they care so well for everyone and get the best out of everyone, without being a hot house or leaving the ‘weaker’ children behind. As I remind myself repeatedly, makes living in this shoe box worth while.

Of particular interest was their use of visual timetables, which I knew they were using but didn’t know how successful they were, the answer, very. They’ve had particular success with using visual symbols when washing hands with him (not one of his strongest points, washing hands) and have been using the symbol for coat with particular emphasis recently, as he’s reverted back to his old dislike of having his coat on (I thought he’d got past that, sigh). I’ve been thinking of introducing visual symbols at home, particularly for hand washing as well, so as they seem so successful at nursery, will definitely have to give them a go. Think I may need to get another laminator though, I broke the last one, whoops! But plain old paper is not going to last long in the bathroom.

After the meeting, I went buoyed up into town, Boy Lacer was at nursery and Girl Lacer back at school (temperature now absolutely fine, weird). You know how it is when kids are ill, even for just one day, you of course need to get into town that one day and of course you can’t. And of course I couldn’t go into town this morning as I was waiting in for a delivery (which was late, so I could have gone), so I had to squeeze in a quick trip before pick up. I try not to go shopping in my afternoons off, as I really need that time for working, but it’s nice to go shopping occasionally on my own. Mr. Lacer lets me escape sometimes at the weekends, but town is normally crowded at the weekends and almost deathly quiet by comparison on the weekdays, but Christmas shopping seems to have hit town and it was crowded today as well, almost couldn’t fit in all the shops I needed because of the queues. Still, managed to get what I needed plus a pair of very cheap M&S jeans I’m planning on making over Sublime Stitching style.

So, busy, busy, busy. Learnt today as well, exactly what the nursery is responsible for at the christmas fair and as a nursery rep, that therefore means I have to be one of the people organising it and it’s the grotto, shudder! This means getting lots of volunteers, organising wrapping the fake presents, organising the gifts and haranguing three dads to ‘assist’ Father Christmas. Poor Mr. Lacer, married to a rep, I bet you can guess who I’m thinking one of the three ‘assistants’ will be! Still, extremely glad to be giving something back!

Back to NaNoWriMo

After my week off writing, preparing for my craft stall and Etsy shop, I’m now back doing NaNoWriMo, I knew it was a mistake trying to do both and I know pretty certainly now that I will not make 50,000 words by the end of the month (I’m currently on 15,900, whereas I should be over half way). Specially now there are now two cases of swine flu in Girl Lacer’s class, so it feels like an inevitable very short amount of time before it hits us to. I’ve also hit that middle of the story duldrums, you know, when you’ve set the story up and you just have to get your character through A, B and C before anything else exciting can happen. I also don’t like how by doing NaNo, much as word count is normally on my mind anyway, now it’s rampaging at the forefront and it’s effecting my judgement, now it’s almost not “Is this sentence, this plot point any good?”, it’s “How many useless words can I ram into this scene” instead. But on the brighter side, my NaNo is a story that has been circling in my head for literally years, one that I had written the beginning of over and over again and I’ve got way beyond that beginning now, I know my characters and other than being artificially constrained by time, I still like my story, so it has progressed, but what I’m writing to me does not even stand as first draft quality, it’s draft 0.5.

In other news, Boy Lacer had his first physio appointment since August today and he’s doing pretty well, still not running and jumping yet but possibly I think maybe as good as he’s going to get. Still, he learnt how to climb down a ladder today, which is a relief, a boy who can climb up ladders but not down is always a bit of a worry!

The physio has been moved and it’s now quite a long bus journey away, consequently we were late getting there and late getting back to nursery, the hour long appointment now literally taking up the whole morning, leaving as soon as we drop off Girl Lacer and coming back just in time (or not) for nursery. Still can’t complain too much, wasn’t the physio’s decision, she doesn’t drive either and now has to take the same bus we had to take. Found out something interesting as well, despite being told otherwise, Boy Lacer’s occupational therapist is still working there, so why hasn’t she seen him for a year now? Could really do with some OT.

Blackberry and Apple Pie

Today’s staycation trip was to a local(ish) pick your own farm, we’d never been before, it being one of those sort of places that I’d been very aware that it’s there, all my friends go, it’s just that we’d never got round to it.

I knew there’d be an amazing amount of choice there, lots of vegetables, flowers, as well as the normal fruit, I didn’t want to go with no idea about what I was going to do with the produce afterwards, so after checking what was available at the farm, I decided on another go at Jamie Oliver’s Blackberry and Apple Pie, that I’d originally made back in February ’08, with raspberries instead of blackberries.

After proving that your wife sitting in the passenger seat with her beloved iPhone using the map app is not equivalent to sat nav (Mr. Lacer is desperate for sat nav), we eventually got to the farm. We then had to take a while to find the pick your own bit and then took a while to figure out where to go (Mr. Lacer equated to the first time you visit Ikea). It didn’t help that I was fielding phone calls with Boy Lacer’s physio at the time, as I’d left a message with the physio before we’d left the flat and I’d left her my mobile number. I’d wanted to make another appointment for Boy Lacer, which is normally a fairly easy thing to do, as it’s easy to get to the hospital, so not much risk of the appointment clashing with drop off or pick up with Girl Lacer, but the physio broke the news that the entire special needs children’s department is relocating from the hospital to a suburb not exactly close, suddenly appointments which were a twenty five minute walk away are now a twenty minute walk followed by half an hour on the bus away, sigh. I know it’s probably great for people in this particular suburb, who previously had to make their way to the main hospital and I was lucky in that I live so close to the hospital, but I think it’s yet another infuriating case of decision making where the needs of ‘clients’ who don’t drive haven’t even come into it. The hospital where the unit was based is in a major town and probably (I don’t know the unit’s exact catchment area) pretty central in the catchment area and of course there’s multiple public transport links to get there, whereas this suburb is quite out the way and I feel for anyone else who would have to say catch a bus into town first from whereever they’re living, to then have to go and get another bus out again, with a special needs child. And of course there’s the time it takes to get to the appointment, followed by the usual wait for the appointment, followed by the length of the appointment itself, then followed by the time it takes to get home again, what are you going to do with any siblings during that time? So car use and a ready supply of alternative child care assumed then? Oh well, Boy Lacer shouldn’t need to much more physio, he’s progressing, still not at the level physically he should be at nearly four, but the progressing bit is the important bit. He also should be still having occupational therapy, which is in the same unit, but after a long long time with no appointment, I rang the unit up to discover the occupational therapist had actually left ages ago (and the occupational therapist was actually new when we originally saw her) and they’d only just hired, to quote the receptionist “some girls”, needless to say we still haven’t had any occupational therapy appointments, despite me putting a request in for them to contact me. Boy Lacer is also still having speech therapy but luckily he was transferred from the hospital unit to the community unit, where we finally had an appointment, a single appointment, with the promise of more if I agreed to jump through some rather useless hoops, they eventually send me the information for the useless hoops I had to jump through and when I ring back and say that due to childcare issues (see there they are again, assuming this limitless alternative childcare) I could in no way go to their course, I then get informed that oh the speech therapist has left as well (see a pattern forming) and the speech therapist we’d seen had been new as well. Finally we have the occasional appointment at orthotics, which will mean more long bus rides in the future and of course the paediatrician appointments will be at the new unit to.

Anyway, here I am getting seriously distracted from the more yummy prospect of blackberry and apple pie, so after finally sorting out Boy Lacer’s medical calender, we went to pick some apples. There were quite a few different varieties of apple trees but most seemed to have reached the windfall stage, so no cooking apples, however we did manage to pick six small apples. Next up were the blackberries, which, obviously by their size, is more picking fun, as you have to pick considerably more than six. We were going to pick some flowers to but a certain five year old in my company needed the toilet.

All in all though I was impressed, if initially a little confused about where to go. I was particularly impressed with how much value for money it was, the apples were just 44p and the blackberries £1.46 for about 400g worth, I doubt you’d even get a small punnet for blackberries in the supermarket for that sort of money. I know definitely where I’d go if I was in the mood for making jam.

So, we got home and minus an antiquated fuse blowing, I got to make my blackberry and apple pie. Girl Lacer helped make the pastry and I did the filling. It didn’t turn out quite to be Jamie Oliver’s recipe, as I didn’t have quite enough apple so it’s more ‘blackberry with a hint of apple’ pie really and for the pastry I didn’t have quite enough plain flour, so I was a bit naughty and topped my flour up with self raising, so it was about two thirds plain to one third self raising and you know what? That really worked, yes it was slightly puffy pastry, a tiny bit cake like in places, but that was actually a bonus, as it helps keep the pie together when it’s cut so that not all the filling leaks out. And as for taste, yum, one slice, you want more, second slice, you can’t eat another thing.

First day of holidays and . . .

. . . and I get a really bad sore throat . Spent the first part of the morning suddenly really interested in watching CBeebies, honestly a pre-school documentry about things with spines, about my level. I still had to take Boy Lacer out to physio though, haven’t had to take Girl Lacer along to one of Boy Lacer’s appointments and just as when she used to have to come with us, of course we were late. Thankfully she walks quicker these days, so although we were later than my predicted, allowed for half an hour by fifteen minutes, we were only five minutes late and a NHS appointment on time? Course not!

The principal reason for the appointment was to get some new Piedro boots (as the physio glared distainfully at his brought as an interim, doodles) but also to check his progress, which turns out to be ok, although his lack of crawling as a baby is now showing up as his lack of left – right coordination (because as a crawling baby he would have got used to going left right left right with his arms and legs, although maybe he just has an issue with this anyway, which is why he never crawled). He can crawl now by the way, although his asd is getting in the way of his willingness to try new things, like practising crawling in the tunnel or having a go on this cool new physio toy, pretty much a plastic tea tray on wheels. Anyway the lovely physio will be coming to visit Boy Lacer when he starts nursery, which I think is nice, going to make sure they encourage his gross mobility, apparently he might be eligible for certain programs.

After physio we followed tradition and went into town for lunch, although I couldn’t even face the thought of eating a full McDonalds, so I had a numbing Frescato from Costa Coffee instead, always forget every summer how much I like them.

And then on to John Lewis to get a pattern and some fabric for a dress for Girl Lacer. Apart from a rather useless attempt a few years ago to buy a hat pattern, I’ve never brought a pattern before, I’ve always used pattern books and I have admit I was a bit disappointed, flicking through pattern catalogues seems a little like flipping through a BHS catalogue circa 1999. I know there are good patterns out there, I’ve seen them featured on blogs etc. but it feels like they are few and far between. So it was a bit of a trial finding a pattern we both liked, it took Girl Lacer a while to realise we were buying the shape of the dress, not the fabric it’s made out of and then she was picking the most complicated dresses, which I had to say no because mummy’s sewing wasn’t that good! I was really after a simple shift pattern, but we ended up with a plain top with a gathered skirt *shudder*. We also have some Amy Butler fabric, which is an ‘interesting’ choice, but Girl Lacer launched herself at it straight away and could not be persuaded otherwise.

Well I guess it’s the holidays then

It was Girl Lacer’s last day of term today, it was presentations this morning (vouchers from the trendier local department store, as although all us 30 something mums adore John Lewis, we do remember our 20s well enough to remember (eventually) that a 23 year old teacher would probably not be too thrilled with John Lewis vouchers). I, as a rep, got some Crabtree & Evelyn goodies, probably what the 20 something teacher thought was right up the street of a 30 something mum (when you’re 23, a 30 something mum must seem like an alien creature), actually I quite liked my Crabtree & Evelyn goodies, so conforming to type there! Girl Lacer gave her teachers the bags I made the other day with the embroidered faces on to.

Me and Boy Lacer then went home to enjoy the last day of reasonable quiet before picking up Girl Lacer at 2pm and onto a mass picnic in the drizzle in the park. I had to utilise my independently roving eye balls keeping an eye on both Girl Lacer, who was busy proving her tom boy side after yesterday’s ballet exam, by climbing as many trees as possible, I had to not look after awhile, too scary, whilst Boy Lacer was dribbling his football and getting in the way of a far bigger boys football match.

Then onto Sainsburys where I was in an expansive mood, so allowed Girl Lacer dictate dinner choice, so it’s pizza with icecream complete with cornet, unfortunately also complete with enough sprinkles and decorations to make it look like a cow (I can only try), thank you cornet sellers for putting ideas in my children’s heads.

So, I can’t believe it’s the end of reception or the end of Boy Lacer’s time at home pretty much all the time (I think there’s a whole lot of difference between just two mornings a week compared to five afternoons a week next year). With Girl Lacer, well, you’re only in reception once aren’t you, whereas years 1 and 2 sort of blend in with each other, just as years 3, 4, 5 and 6 do. Those years are also a lot more hard work! And reception is a special time, your first experience with school, learning to read, learning to do maths. I’ll miss Girl Lacer’s teachers, particularly her class teacher, who was an excellent role model and the lovely nursery nurse who has been with Girl Lacer’s class group for two years, I really hope Boy Lacer is her class group when he’s in reception. As for Boy Lacer going to nursery soon, we’ll have significantly less solo time together, just as he is really beginning to blossom, which is sad, although I am grateful in that Boy Lacer, who was widely predicted to be premature and could easily have been born in August instead of October, he was actually born at the end of September, only a few days early, if he had been born in August he’d have been going to reception next year, not nursery.

So, to the holidays, tomorrow I want a lay-in, the kids have been really hard to get up the last few months, so of course they’ll be up at 6am tomorrow. We have a physio appointment for Boy Lacer, just to check his progress (he’s doing really well, I suspect we won’t be seeing the physio again for quite some time, so that’ll be just like speech therapy and occupational therapy then – note of irony there) and also to get fitted for some more Pedro boots, he’s meant to get his Pedro boots fitted in orthotics, but the first appointment was at the end of August. Think after that it’ll be a leisurely lunch in town and then not much more than that. It’s been a hectic end of term, as always and forget the kids, I need a break! So we just have a mummy and Girl Lacer trip to the craft cafe lined up for the weekend. But long term holiday plans, there are quite a few art galleries we want to do and as long as it doesn’t keep peeing down, we’ll try and get lots of parks in. We’ll be going to my dad’s in August, where hopefully he’ll still have a brand new kitten, if it hasn’t escaped again or terrorised my dad out of house and home. It seems a long time till September 7th.