Primary school auties: summer and beyond - thread 5

[openupmyeagereyes]

This is the continuation of the thread for parents and carers of autistic children in Early Years and KS1. Most of us are parents of children in Reception or Year 1, but all welcome!

Here are the links to the previous 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

Yes I see that harley. I screen shotted this ready to email school I'll add it below.

Also the ehcp provisions are reinstated for September aswell but ds ehcp is a pile of shite anyway so there's not much to hold them account too but that's another thing being changed in September at his review. They can make it less toilet roll worthy for starters. I'll bloody re write it myself.

I didn't see you had corona harley! Glad you are all well x

Just phoned sendiass thanks light for reminding me to phone (it was a local number) didn't realise it was local I thought it was nationwide for some reason like an 0800 number and no one local.

Anyway, discussed everything with the lady and she wasn't impressed to say the least.

She's got someone phoning me back with in 3 days and she's going to come to the annual review with me in September she said his ehcp doesn't sound fit for the paper it's on. And the phone call within the next 3 days is to give me legal rights regarding hours (she said what they are doing is illegal at the minute)

I told her he was going to special school shortly and she wondered why I'd never been in touch with them before since he's been in the system all these years already. But anyway I've made the phone call and I'm pleased I did. They sound a very useful tool to have!

danni I think how good they are can vary. They are a local authority department but are supposed to work on behalf of parents. I’ve seen the head guy of ours speak a few times and he came across as very genuine, had worked in SEN education for years.

Hopefully they can give you some proper support.

We had ds’ annual review via Zoom this week. It was a bit strange. It will be interesting to see how much of what we wanted is in her draft!

What things did you ask for Open? I'm sort of drafting bits out or getting ideas together now for ds. His needs starting from beginning to end really.

I asked them first if it was confidential and soon as she said yes what you say won't go any further than this phonecall I told her everything 😂 bet she was thinking will you just fuck off!

She said if I want her to contact the school at any point on my behalf to just let her know. I'll do that myself to start with but if I get nowhere I'll ask them too.

Hmm wondering if I should phone ipsea instead? I've just read a thread about sendiass and they aren't or sometimes aren't as confidential as they say!

Hard to know who to trust x

I posted about it on the previous page danni. I want to try and make the educational targets much wider while trying to keep them measurable so the key thing will be within x amount of age related expectations. Whatever is appropriate but stretching.

One of the current ones is that he will attend to adult led activities for 15 minutes. Well he already does that (when he’s in the right frame of mind) so I said it needs to be extended to 15mins for each of the 6 lessons of the day for instance. Otherwise they can argue that if he does it once per day it’s enough which it isn’t. They wouldn’t necessarily but you never know what might happen with a change of teacher or head teacher.

It couldn’t hurt to phone IPSEA too.

Yes of course you mentioned it open, I remember now.

I'm just on ipsea website trying to book a 30 minute call back but for some reason they have no slots available it says available when turquoise and to check back so I'll have to keep going back until something comes up.

School have just phoned me actually to ask if the 1st day back in September I'll keep ds off because the other children are spending the day in there old class and it would confuse ds going into yr 1 one day then his new class in yr2 the next. So I agreed. Bcos it would confuse him. Not sure if it's legal what they asked but I'm not bothered because I do agree with it confusing ds unnecessarily. So he'll go back the 2nd day of term straight into his new yr2 class.

So then I mentioned hours and she said it would probably stay the same as now 9.30-2.30 but she'll double check with the head and let me know so I just said outright well actually I want ds to do 9-3 (which the others do 8.40-3.20) because I don't want him to lose education no other child is losing and overall it's a full school day a week he's losing, so she agreed and said she would pass the message on to the head and get back to me regarding 9-3pm. I won't back down on that either I'm afraid.

Then she told me his 1-1 who he has had from his first day (2 years now) isn't his 1-1 from September, ds will be gutted and I mean gutted he tells me he's going to miss xxxx house to play with her cats, he's going on the tractor (they have a farm) he talks about her all the time at home, they've got such a good relationship so I feel sad for ds but at the same time he's moving school in yr2 anyway so he will have a massive change coming his way regardless.

Bless him x

@danni0509 i have just had a email form my local LA informing all parents that the coronavirus bill for ehcp and send ends 31st july so ehcp and legal duties go back to the way they should be on 1st August

Difficult afternoon here. Ds has taken to hair pulling when he’s in a tantrum. He did it a few weeks ago and then again today. Totally calculated, he wasn’t in meltdown at the time though he had tried. He knows that he shouldn’t do it.

Any of your ds’ do this? Please tell me it passes!

And I mean pulling my hair, not his own.

Hi all!

Danni I'm sorry the school are messing you around again. SENDIASS legally have to be impartial and can only pass on information with your permission. Having said that they are a mediation service so they have to be impartial to both sides. In reality I imagine they side with parents more. If they are not being impartial then they are not doing their job within the legal framework.
With the IPSEA slot I found just sitting on the page and constantly refreshing eventually brings up a slot.
What the school are doing are illegal exclusions and you don't have to pick ds up unless the head (and only the head) sends you written confirmation that it is an illegal exclusion.
Hopefully you'll get the support you need!

Open THat sounds tough, thankfully we haven't been through that phase yet. Hope that it doesn't last too long!

Harley that's brilliant news! Well done for preserving.

Hope everyone else is ok.

We're into the second week of settling in to the new school and ds will be doing full days from tomorrow. He seems to be adjusting well although he still refusing to eat at school.

I've got a phone appointment with the dietician tomorrow to talk about ds, so it should be interesting to see what she says.

Open ds pulls my hair, he takes quite a lot out on me but not his dad bizarrely. He's got a thing at the minute for gouging my face really hard which bloody hurts. And grabbing my glasses off my face and throwing them at the nearest wall I think that annoys me more because I can grow new hair I just can't afford new glasses Hope it passes quickly or he doesn't do it to you again x

Liv I'm pleased ds is settling in, hope the full days go ok. I'll keep refreshing ipsea page. Ds is another who won't eat at school, he doesn't touch his pack lunch or snack, he doesn't really bother with breakfast but does eat enough after school so I try not to worry too much x

liv glad ds is settling in well, it all sounds very positive. I hope the dietitian can help. Please post if she has any good advice. We could do with some here!

danni that sounds difficult. With ds it is usually about the iPad. He doesn’t always get physical but does sometimes. Lots of reminding of the rules needed over the next few days here. Hopefully tomorrow will go better.

Danni my DS's school is also putting the children with their current teachers for the first few days of term in September. I am worried that it will confuse my DS. Sorry to hear that school are being unreasonable about the hours. I consulted our local SENDIASS when we were first refused EHC assessment. I found them rather unhelpful and I doubted their impartiality - given that they're based in the Council offices and funded by them. With IPSEA I found that my insomnia helped. I booked a slot at 2am

Liv I am glad that the new school is working out.

Open DS pulls his own hair out. Screaming to make his baby sister cry is his new favourite hobby. I hope that these new interests pass soon.

Well done Harley - we shouldn't have to fight so hard.

Received DS's school report today and based on where he was at the end of the Spring term it says meeting expectations apart from writing and grammar & punctuation. Quite reassuring

Danni ds used to do the glasses thing too. Used to drive me nuts because they are so expensive to replace!
I find it kind of amazing how little food ds survives on and can still be so strong and energetic. It's miraculous really.

Thank Open. Not sure what I'm expecting tomorrow but will definitely pass on anything that seems useful.

That's good news about the school report dimples. Sorry about the screaming to wake the baby though, that sounds tough.

I agree, we definitely shouldn't have to work so hard to get things for our kids. We also shouldn't have to suffer due to mediocre support.
In pretty much every case with ds I've been at the whim of whether the person was good at their job or not, so often very frustrating. Luckily we have a pretty good SENDIASS team but they are underfunded so can't always give as much support as needed. Think that's probably pretty standard though.

Ds has been awake since 3 this morning, lovely!

Oh danni been there many times, it sucks. Big sympathies

dimples hopefully the screaming at the baby stops soon.

Quick qn: has anyone come across My Hidden Chimp by Steve Peters?

I hope everyone had a good weekend and is doing well.

Open One of my colleague's recommended it but I have not got a round to reading it.

Fortunately the screaming seems to have reduced a bit ..Feeling apprehensive about the hols.

I am going to try and keep DS up til later tonight as he came into my room at 4am. Thought I had convinced him that he needed to sleep more in my bed. Later DS was v gently stroking my arm and face and telling me that I needed to get up, it was a v pleasant way to be woken until I realised that it was still only 04:30