Primary school auties: summer and the new academic year - thread 7

[openupmyeagereyes]

New thread.

This is the continuation of the thread for parents / carers of autistic children / children with additional needs. Most of us are parents of children in year 1 / year 2.

Links to old threads

Thread 1 - www.mumsnet.com/Talk/special_needs/3080753-DS-with-ASD-starting-school-Sept-2018-I-am-feeling-overwhelmed

Thread 2 - www.mumsnet.com/Talk/special_needs/3451020-Reception-auties-2018-19-thread-2

Thread 3 - www.mumsnet.com/Talk/special_needs/3628263-Auties-transition-to-Year-1-thread-3

Thread 4 - www.mumsnet.com/Talk/special_needs/3748449-Primary-school-Auties-into-2020-thread-4

Thread 5 - www.mumsnet.com/Talk/special_needs/3953023-Primary-school-auties-summer-and-beyond-thread-5?pg=1

Thread 6 - www.mumsnet.com/Talk/special_needs/4166833-Primary-school-auties-spring-2021-and-beyond-thread-6?pg=1

Brilliant danni, thanks for that. I will give it a go tomorrow

Carrie I have to be careful with rewards for ds because if you do it once it’s ingrained and he expects it FOREVER!! It’s like that’s become part of his routine and that’s that. I use to use them for practically everything when he was younger (although not for that what I told you about earlier) now I really try hard not too. School used to do 1 biscuit for a wee, 2 for a Pooh. He got smart to the idea and used to squeeze wees and poohs on demand for more biscuits, I can remember when his old class teacher said to me, could he have a uti? He’s been on the toilet every 15 minutes today, hmm I would say that’s more to get the biscuits I did used to wonder if they couldn’t work something so simple out……

Oh and I never used to ask him to sit down, stand up, sit down, I used to make him, like bend him in to position and lift him back up! 😆 he was really developmentally delayed back then so he wouldn’t of realised I was even asking him to do anything!

Mum ds withholds, he gave himself that overflow diarrhoea thing last year and had to go on laxido for a bit, nightmare isn’t it. He’ll only do number 2 in a nappy now. Wet pants galore here and school at the min and he’d had a stint doing so well.

Anyone else feel like your forever going 1 step forward 10 steps back?

I don’t mean just with toileting btw. I mean everything in general.

Yep constantly. It's that not feeling like you can celebrate an achievement because its gone backwards again soon enough

Ds did not have the flu vaccine today, though he told me that he did. I'll have to try and arrange it at our surgery.

We were late for school this morning because he had a tantrum about wanting to play his video game. I am out of ideas on how to tackle this but need to find something.

DD won't have her flu spray at school either. She did have a go but got quite upset. Poor thing. I always think it's worth a try as maybe one year she will be able too, but don't want to put too much pressure on as in the end we can just go to the nurse at the GP (though they always say "she should be having it at school" and I have to explain autism etc... So far they've always agreed when I explain though, so hopefully we'll manage to get it this year too).

We had a looong time on Laxido. I think we're through that now but it's clear that interoception is still not really typical somehow. She's good at managing things herself now though unless something in her diet changes, so hopefully the other kids will get there in time.

Door for the above post - didn’t mean to hijack, as mentioned I’m first time poster and messed that up too 😂 I’ve asked mumsnet to remove & started a new thread.

Hi @Mum2b39 no need to apologise, I don't have experience, but will follow as my ds has pda we think so we might be exploring anti anxiety meds in the future.

Hi @Mum2b39 sorry I didn’t see the post before it was removed but don’t worry about asking questions etc. That’s really what this thread is for x

Ds taxi driver said school keep going out for him 10/15 minute late in a morning after the taxi has arrived and this morning ds was frustrated in the taxi waiting and took his socks shoes off and wouldn’t let them put them back on, which he often does with his shoes anyway, but the 2 teachers who went to the taxi were like ‘oh one of those mornings is it ds’ in a less than enthusiastic tone, to which the taxi driver (and I would of 100% said the same in response too) well he’s frustrated waiting when it’s 9 minutes after you are due to get him!’

Not having it. The taxi has told me loads of times they are late getting him (he does 2.5 hours a day ffs)

I’ve just emailed school (copied the head into his class teachers email) and said I would like an exact plan of ds hours in school and when he is being increased, he started at the school nearly 6 months ago now and 2.5 hours a day is not enough. Yeah it was shitty but I’m passed caring.

Infuriates me!

I mean the tone of my email was shitty.

If they keep messing you around go direct to the LA and consider sending a pre-judicaral review letter for failure to provide provision.

I would be sending shitty emails too danni. Not surprised you're fed up!

On that email I sent I mentioned ds needed picking up at 11.40 by the taxi tomorrow because he has a CAHMS appointment and need him home to take him straight there. I also put what I said above about hours situation on that same email.

He’s replied, thanks for letting know about him being collected 20 minutes early tomorrow, regards.

Are you joking? He’s completely ignored what I asked, but has read the email because he’s replied to it but not referenced the hours.

I’m having to sit on my hands so I don’t send one back saying..

Hours?

It’s deliberate. Doesn’t want to have the conversation because he knows it’s wrong and they don’t have a leg to stand on.

I’ve figured out why SN parents are so knackered. It’s not even the kids who do it to you. It’s the so called professionals, they fucking drain the life out of me.

Totally agree. Often ds is the least challenging part. Trying to get professionals to understand and talk to each other, then all the bloody paperwork on top is just completely draining!

Do the LA know he's on reduced hours danni? Like mumofsend said I'd be inclined to kick up a fuss about it.

Oh Danni it's so rubbish. I have forgotten have you had the EHCP review yet?

I phoned the mediation service today so I can lodge my appeal re lack of OT provision in EHCP. The poor woman definitely did not need to hear my rant when she asked why I was appealing.

I v foolishly gave into DS's request for a whistle. His old one having been lost - or rather I hid it and can't remember where. It is amazing what a regulatory impact it has had so far. DS whistled and skipped home then went to the toilet without being asked and generally looks v happy. Unfortunately the whistle has had the opposite effect on DD and me....

Hope the appeal goes ok dimples.

The whistling used to drive me mad too! We got these instead which ds still finds satisfying but doesn't drive the rest of us insane! https://www.amazon.co.uk/dp/B0074JWQY8/ref=cmswwrcppapiglttfabcBTSKZEAEH9BHEE12FNHT??encoding=UTF8&psc=1

Thanks Liv they're in the basket!

danni I think you’ve raised it with the LA numerous times haven’t you? The school just say ds can’t cope with more. Have you heard anything more from the school?

dimples I hope the novelty of the whistle wears off.

Ds off with a sickness bug today so won’t be back in until Monday. There are a few in his class apparently.

danni let us know how the appointment goes. This was to discuss his meds, right?

Oh dear open, you too? I had managed one of two plaits in DDs hair this morning before she announced she felt sick then promptly vomited all over the lounge 😞, if it’s not one of them it’s t’other!!. So she’s off school.

Yes good luck for today danni let us know what they say.

Re time in school etc, what’s the legal position? Surely every child of school age has a right to full time education don’t they? If not at one school then another? I would have thought if Dannis school are maintaining that they can’t meet his needs hence a ridiculous period every day there (beyond a short settling in period), isn’t it then incumbent on the LA to move him somewhere where he can attend FT?? But what do I know?!