Hello everyone! It's about a month since I've been on, so loads to catch up on!
Is it your panel tomorrow @danni0509? Will be thinking of you and keeping everything crossed. As you say the situation is completely untenable, it's crazy if he doesn't get special school. If somebody who is being failed as badly as your DS isn't a priority then they clearly need a LOT more special school places. Glad you've got the SENDIASS lady and your SENCO on your side.
I agree the Early Bird + is super-basic. The idea that should make any difference is crazy. The only thing I liked about it was that DD's TA came along with us, and it was great to hear stuff from him first hand (as obviously normally you never get that much time to talk to TAs and find out how your DC are day-to-day at school, and also so he could understand things she had found tricky in the past, or at home). So that part was great, and it was nice to meet other parents - but in the end as you say everyone has such a different experience it's not that helpful. The main thing though as you say is that the content is so basic it's pretty pointless if you've been waiting 2+ years for it. I think we did it 2 years post-diagnosis, so 3 years after we were first told she was autistic, and 4+ years after she was first referred to paediatrics. I had read and watched hundreds of hours of information by then (probably thousands, I was pretty obsessed!) so the course content was generally not very interesting (and in some places wrong/insulting: though I think they are supposed to be updating it to remove the more offensive stuff and luckily our trainer was good and managed to take out/talk around most of the dodgy bits). I really think they need a shorter course that they give to parents within a couple of months of diagnosis (or even pre-diagnosis actually). That could actually make a big difference.
You asked about the poo-holding thing. DD was on Laxido for ages (maybe a couple of years: from about 3.5 until she was 5.5 maybe). I think the problem is once it's a problem it takes a long time to unwind, so you just have to be patient and keep going. What worked for us was:
(a) Laxido and keep going with it: even if things seem stable don't start experimenting with lower doses until you are really sure and even then just reduce little by little. We ended up on sachets then half sachets then teaspoons, then half teaspoons - if we faded it out more suddenly she always got bunged up again. It's just a whole horrible feedback loop between sensory sensitivity and then anxiety I think, so as soon as it gets even a little bit uncomfortable they kind of panic and can't let it out, and the whole cycle starts again. So you just need to keep everything soft for a looooonnnngggg time - long enough that he's actually forgotten to be stressed about it.
(b) Put lots of fibre in his diet if you can: we do whole wheat everything now (bread, pasta, rice - whatever can be wholemeal is plus as many veg as we can persuade her to eat!) She still has a tendency to get a bit bunged up when we're on holiday and food options change, for example, so we always end up packing weetabix and shreddies and dried apricots and stuff whenever we are away from home.
(c) Absolutely no pressure. We tried reward charts and cajoling and "let's just sit on the toilet until it comes" at the start and I think it made it much worse. Even when we had huge accidents we'd just say oh dear, that's a shame, come on, let's go and have a shower. We did give her praise if she told us she needed the loo, but that was it: praise for communication, regardless of whether she soiled herself or not as that was totally out of her control, but it took a while for us to realise that.
I will see if she even really remembers it and has any more thoughts. It seemed to last forever but we have very few accidents now and she's probably been off Laxido for a year or so now. I do know people whose kids were on it until much older (11 in one case!) with no ill effects, so no rush to get off it if it's working. DD liked the sound effects on Mr Poo goes to Pooland but I don't think it made any difference to her ability to let it out in practice!
@dimples76 I'm glad DS's teacher thought better of the glib response: were the new materials any good?
@openupmyeagereyes, glad DS had a good week and hope the extra hour goes well. DD hasn't lost any of her baby teeth yet either.
@LottieBalloo the special school sounds great! Really hope you can get the EHCP sorted as that sounds like a good solution medium term.
We are all good here. Not too much to report. DD like many of our DC won't do the flu spray at school so I've booked her and DS to have it at the GPs in the next couple of weeks (and DS also needs his pre-school jabs ... we were watching about jabs on Operation Ouch today and it was a great opportunity to put his mind at rest, I thought I was doing really well and then DD said "It's going to really hurt you know" and I was like "err... thanks for undoing all my good work"
. Anyway, we'll get through it
. Also got DS's first "school" photo from nursery. Such a weird feeling as DD has never agreed to be in one (if anything she's getting more anti-photo as she gets older). One downside of NT children: school photos are bloody expensive! Anyway, I suppose we ought to get one but we can't really put it out anywhere as we won't have an equivalent of DD. But I think I will get one and just put it in an album for when he's older (though there are so many photos of our kids these days, I wonder if they'll have any interest at all?!)