Poo* clinic

Boy Lacer had another poo clinic appointment today, actually we had a really busy afternoon, having to drop something in at school, then to the GP for his pre-school boosters (very brave little man, didn’t cry even a bit), then post office to drop off my still poorly iPhone and then finally onto the hospital, so consequently I have walked very far today and my feet hurt. Anyway, the poo clinic appointment has left me slightly peeved, currently Boy Lacer is on two sachets of movicol (one doesn’t work, three makes him too uncomfortable) and I have been fairly happy with him on two, although I have realised that the impaction wasn’t completely clearing whilst he was at that level, but things were moving, put it that way (about 5 – 6 times a day). However they are not moving enough apparently, so from the weekend after next Boy Lacer will also be on senna as well as movicol at the weekends, to make more of the stuff come out and at half term his movicol will be increased to eight or nine sachets, basically we will be doing nothing at half term bar changing nappies. Fair enough he needs ‘clearing out’ but what annoys me is that we have cleared him out before, then reduced dose and then he gets impacted again, with no real investigation as to why, it’s just ‘all part of his autism’, yes bowel complaints are, I think, more common in people with ASD but bowel complaint are still a separate condition, so the lack of investigation pees me off. I can hazard a guess that Boy Lacer’s problems in this department originate from a combination of his autism causing sensory issues about going to the toilet and his hyperextension probably hampering bowel mobility combined with a somewhat self restricted diet and a lack of exercise (caused by the hyperextension), which caused the original constipation which has now compounded itself, but hey, I’m not a doctor (and it doesn’t solve the cycle of increasing and decreasing movicol).

* It’s actually called the PACE clinic and I still don’t know what that stands for.

First (small) patch cleared.

It feels so good to have completely cleared my first (small) patch of land. I’d managed to grab about half an hour up the allotment yesterday and I’d cut back some very bushy weeds but didn’t at that point have my fork with me, so me and Boy Lacer came back today with the fork (and the spade, in case those roots were very tough). We’d dropped Girl Lacer off at school first, so had dumped the spade and fork on the pushchair and Boy Lacer walked (which was spotted by the headteacher at the front gate who commented at how well he’s walking, which was nice and a bit surprising and well not really at all surprising really that she knew Boy Lacer had issues in that department). Once at the allotment Boy Lacer played with the handy toy car he keeps secreted in my bag for toy car emergencies whilst I forked, pulled and raked. Boy Lacer (in between playing with the car) was offering me gardening advice “my friends*, when they dig, they put their foot on top of it (on top of the fork or spade) and push down”, I thanked Boy Lacer for his advice but actually the ground was surprisingly workable and the fork slid into the soil easily, I actually think the soil might be quite nice, if a little stony and full of weeds.

The dubious apple tree - I need to consult some of my many gardening books (I know it's an apple tree, it's more of a case of is it healthy and worth saving?)

After I cleared the ground me and Boy Lacer, well to be honest mainly Boy Lacer built the compost bin, it’s one of those wooden slot together kits (it worked out cheaper than trying to buy the bits to build our own). Although I’m already looking at the amount of waste the allotment is generating and thinking we’ll need more than one, so although it will do for the moment, when planning the allotment I’m going to make sure there’s enough space left for one, maybe two more.

We also met our one of our allotment next door neighbours, a lovely lady who gave us some of her prize winning runner beans and was very friendly. Can’t wait to go back.

Another view across my plot; behind all my weeds, in the distance, is a bit of Richmond Park wall

* Boy Lacer has recently taken to starting quite a lot of sentences with “my friends . . .”, I think he’s copying me and Girl Lacer telling anecdotes, although in the case of his gem of gardening wisdom, I think the friends in question may be Fifi and the Flowertots and Dirt Girl.

Boy Lacer’s and mine* first school trip

Boy Lacer went on his nursery trip yesterday to The Wetlands Centre, I went on the trip to, as a helper. It was Boy Lacer’s first ever school trip and my first ever trip as a helper (*of course I went on school trips as a kid).

We’ve been to The Wetlands Centre before, which was ok (but didn’t give me the urge to rush back, I’m not a great bird spotter), but at least this time it was easier to get to, as obviously the school bus went straight there, unlike public transport. School buses though, not designed to fit in adults legs are they?

Boy Lacer was a very good boy for most of the trip (he did threaten a spot of a melt down when it seemed even to me that we were taking ages to find somewhere to have lunch). They had provided us with a wheelchair, which was handy as the site’s quite big and after we’d made it to the playground Boy Lacer was getting quite tired.

It was sweet seeing Boy Lacer play with the other kids, showing how much easier it is for asd kids to integrate when they’re young. He’s quite good friends with a little girl S and they ran round quite a bit and he got in the middle of some great big recreation of the ZingZillas.

I don’t know who was more tired, me or Boy Lacer, when we got home. I had to go out again that night, back to school for the Reception induction evening. I got to get a look around Boy Lacer’s new classroom and meet his new teacher and spend an awful lot of money on school uniform.

Random things sequentially

This post should have been written yesterday, as I have another one coming up tonight, but oh well!

I bet you didn’t put me down for a football watcher did you? Well actually I tend to only watch internationals but ooh last Sunday’s match was painful. England’s man of the tournament was definitely David James, which is saying something about how bad England’s defence was. You certainly had to feel for the poor man turning the air blue, watching the game, you certainly didn’t need to be an expert lip reader. Both me and Mr. Lacer noticed and we both commented, which prompted Girl Lacer, also watching to go “What’s he saying? What’s he saying?”, of course we didn’t tell her, which made Girl Lacer plead, “Come on, you could whisper it?”

I’ve been a little bored with the contents of my iPod recently, with the only thing I’m really loving being Plan B, so I was rather pleased that two new albums came out recently. I downloaded Eminem’s Recovery at the weekend, I tend to own anything by him (last concert of my pre-kids existence was Eminem at Milton Keynes Bowl, me heavily pregnant with Girl Lacer, Mr. Lacer ready to punch anyone in the crush on the way out, me having to be eventually semi rescued by the concert guards, *sob* I hate not being able to go to concerts anymore) and I’d already downloaded and loved the single from the album ‘Not Afraid’, however the album itself, hmmm I think it may be a grower and there are certainly some excellent tracks on it, like W.T.P, as well as of course Not Afraid, but the whole album does seem to be about how recovering from addiction is hard and how much he doesn’t like his wife.

No, what really excited my iPod was downloading Scissor Sisters’ Night Work yesterday morning, I listened to it straight away and it is brilliant from the word go, it had me and the kids dancing on the bed as we got dressed. Girl Lacer, it turns out, already knew all about Scissor Sisters, her class teacher plays them at carpet time for a treat apparently (wow, I would so love to be 6 and go to that school) and had promised them the new album to listen to on the bus on their school trip.

Girl Lacer isn’t the only one with a school trip; Boy Lacer has a school trip coming up to and for it he needed sensible shoes. Now whereas Girl Lacer has multiple shoes, Boy Lacer has always been a one pair of shoes at a time boy because it’s quite difficult to find shoes suitable for his feet. So his current shoes were a pair of Doodles sandals, not particularly because I was trying to be cheap but because when we went summer shoe shopping about a month ago, they were the only shoes that fitted. But open toed sandals aren’t appropriate for the Wetland Centre (where he’s going), so we had to go shoe shopping again, this time for trainers. And oh, I never normally get the urge to tip shoe shop assistants (not that you would anyway) but everytime I take Boy Lacer, I feel like I should because the poor shop assistant has to bring out armfuls and armfuls of boxes before we find probably the only shoe that fits Boy Lacer’s peculiar feet. The photo above is of probably the seventh pair of shoes he tried on, which just about fitted, phew. Now Boy Lacer looks as if he’s all foot, as his feet now look weirdly massive.

* Staying with Boy Lacer, we found out what class he will be in next year, which makes it all seem even more real and weirdly, as I’d be trying to play guess the class (out of the three possible classes), of course it was the one class I didn’t think he’d be going into. I’m not sure yet whether his nursery grouping will be split up yet, as the letter gave no indication. Although a quick check with my friend and her daughter will be in the same class, but like I say, there’s only three classes, so a 1 in 3 chance she’d be in the same class anyway.

Finally some craft! I whipped these up last night from some fabric I bought at the John Lewis Clearance sale. Only £3.50 for two panels, I made up a sun cushion and a caterpillar cushion and left them on the sofa for the kids to find this morning (photo is me taking a photo as I still lay horizontal in bed, as Girl Lacer rushes in to ask me about them – she always likes to know how I made something, you can just see the caterpillar peeking out behind the sun, if you click on the photo, it should make it larger or you could go to my Flickr account to see a picture of Girl Lacer posing with the caterpillar alone). The pictures are of course from The Hungry Caterpillar.

* School image byImage: graur razvan ionut / FreeDigitalPhotos.net

Wheels!

I mentioned in yesterday’s post that I’d been waiting in a lot for deliveries, well this was the first weekend the kids got to try out what had arrived. Girl Lacer’s new wheels (after the half term debacle of trying to get existing bikes fixed and then stabilisers on them and then getting a Freecycle bike and the stabilisers not fitting on that either*, we gave up and bought a new bike) is from Amazon. Boy Lacer’s new wheels (we felt as we were getting Girl Lacer something, we should reciprocate for Boy Lacer) is a balance bike from Argos, as recommended by the paedtrician, well not the Argos specific bit, but they’re a lot cheaper than the wooden versions.

Boy Lacer is very impressed with his new wheels and can ride it, well not exactly quickly but can ride it. He’ll stop after a little while and get off and inspect his bike, crouching down, in only a way a bloke could, we’ll ask him if he’s getting tired, which he’ll vehemently deny (but he is really).

Girl Lacer’s new wheels are very purple (her favourite colour – which is a de rigueur requirement for all trendy 6 year old girls I think, pink is so passé) and have sparkly things coming off the handlebars and will hopefully keep it’s value reasonably well so we can flog it on Ebay in a few months (she grows like a sunflower) and she can already ride it quite well.

Now all I need is a bike.

* The Freecycle bike is lovely and reminds me of the nice solid sturdy bicycle I had as a kid but it’s actually a tad too big for Girl Lacer anyway, so by the time she can fit on it, hopefully she won’t need stabilisers and until then it can stay in the shed.

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).

Orthotics

It was the first of the mammoth round of appointments today; so lucky then that Girl Lacer went back to school today and conversely, due to the first appointment, I had to keep Boy Lacer off. All disabled children’s services in our home town,were moved last year, out of town, fair enough to all the people in the borough who had to travel to where it used to be, but I bet the majority of the services ‘clients’ have to travel even more now, as the new service building is tucked away in a corner of the borough, which, if you don’t drive (like me), it takes a while to get to, whilst at least where it used to be, it was served by better public transport links. So now, whenever an appointment comes up, it requires considerably more mental arithmetic to work out if I can make the appointment and factoring in the fact that of course the appointment is not going to be on time, still drop off / pick up Girl Lacer. Unfortunately, today’s factoring did not allow for Boy Lacer to also attend nursery, so he had to skip an afternoon, so it was an odd day (it was an odd day yesterday to, with Girl Lacer being off sick still). We dropped Girl Lacer off at school, went back home again, played two player Uno on the Wii (for a painfully long time), I managed to get some washing on the line (with this glorious weather) and then we had to go out again, which like I say was odd. Going out at 11am, that’s when the streets round me are the realm of the toddler and the harassed mum, where getting ready to go out means that 11am is the earliest you can make it. We popped into John Lewis to get some crafting supplies I’d run out of; black embroidery thread, a water soluble marker and some interfacing and surprisingly for my favourite place to get my craft fix, they were out of two out of the three things I needed! Ok, being out of black embroidery thread is not actually that surprising, I’d swear if you did a survey or something, black is the most used colour (therefore meaning they should stock more), as I’ve often had the problem of needing black and not being able to get hold of any, to such an extent I normally bulk buy black when I can, but being out of water soluble markers to, grrrrrh! Then it was on to the bus station.

It’s a half hour bus trip to the new children’s centre and when I did it last time, I took the precaution of dosing Boy Lacer up with Phenergan (which amongst other things can be used as a travel sickness med), but I was foolishly optimistic today, so consequently by the time we got to Chessington Boy Lacer was looking quite green, so we had to get off the bus a little early and walk the rest of the way, popping into a chemist on the way and asking for more Phenergan, to which I got the normal strange looks, which I get every time I ask for the stuff. Phenergan isn’t the nicest of things, but we’ve stuck using it with Boy Lacer as it’s in liquid form and I personally didn’t want to try and get him to eat a tablet, but today they didn’t have any Phenergan, so I had to resort to buying some Joyrides, which yeah, he took (taking about three tiny bites out of the tiny tablet, but he ate it all), so no more suspicious looks in the chemist!

Anyway, we eventually got to orthotics (after the predicted lengthy wait in the waiting room, where Boy Lacer played his new obsession, Total Wipeout, there is one benefit of the new disabled children’s services building, the waiting room has gone from a tiny cupboard, where people used to have to literally squeeze on top of each other to a large and airy playroom). Boy Lacer has been wearing Piedro boots since about 1, when he originally got them (and I hated them on sight), I was told by his then physio, that he’d need them till about nursery age, thing is, he’s been through so many changes of care in that respect since getting the boots, I thought that cut off date was out of the window (specially since he’s already been in nursery for half a year) but no, they’re actually taking him out of the Piedro boots, so bye bye boots that were a pain to lace up and Boy Lacer would have never have learnt how to, caused him great anxieties anytime he thought his laces were about to become undone (which they did on a regular basis) and where if he stood on your foot or kicked you in the shin wearing those boots (which he also did on a far too regular basis) hurt like hell. However, also bye bye to never having to buy him shoes (and any parent is going to know exactly how much that costs . . .), as the Piedro boots were on the NHS.

I’d like to say that they’re taking him out of the boots because his feet and ankles have drastically improved, they haven’t (in fact to my untutored but parental eye, I think they look slightly worse; his feet and ankles lean inwards), but instead they’re giving him a far more solid inner sole (he’s had smaller, flatter inner soles in his boots for just over a year now), which will slide into any shoe, as long as it’s not a slip on shoe, which admittedly will be great for summer (those Piedro boots always looked awfully hot), oooh god, just had a thought, that transferability, PE next year in reception, transferring the inner soles between school shoes and his (I’ll be able to find velcro strap on) plimsolls and back again, those inner soles are going to get soooo lost. Anyway, I’ve seen the inner soles (although we haven’t got them yet, oh no, I have to go back on that bus yet again for that) and just the sight of them made my feet wince, as although I don’t really have Boy Lacer’s specific feet problems, my feet problems as a child were also treated with inner soles and I remember how much those babies hurt. So, he’s getting (on the orthotics person’s advice) a very slow build up time.