Primary school auties : spring 2021 and beyond - thread 6

[danni0509]

Hi. 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

Everyone welcome x

Yes totally agree they receive an amount for ds it’s not being used for ds, he’s refusing to go in a lot and no one seems to be really trying to help you or coming up with a solution, none of the strategies are working (even those from the EP) so it does suggest ds needs something more specialised, and even then it probably won’t be a magic cure but he may feel more at home in a specialist setting and then hopefully will want to go to school. They tailor the work to his exact ability so he might not feel so stressed with not understanding the work.

I really hope something can be resolved soon for you x

Hello. I’m more of a lurker on this thread - but jumping in to ask for advice. We’ve got DS’s transition to yr1 meeting tomorrow and I don’t know what to look out for or ask about or anything really. Basically I’m scared that his really positive experience of school so far will not carry onto yr1. Should we focus on making sure he gets a 121? Or on making sure next teacher understands his needs?

DS doesn’t have a diagnosis, but is probably neurodiverse. Went to school with funding that nursery had secured for him, which got him a 121.

Pretty typical asynchronous development - roughly 2 years ahead academically and 2 years behind emotionally.

He seems to be happy and liked at school and we’re not getting the coke bottle effect, so I doubt he’s masking much.

On the other hand he wanders off at break time and hides somewhere with a book. And he runs off and screams when he’s upset - much less so than at the beginning of school, but still happens. He also needed quite a lot of support to manage the school plays and sports day - and that was without the audience thanks to covid.

(We’re thinking of paying privately for SLT and OT assessments.)

danni the problem is the specialist provisions are full. I am not confident he will qualify academically for the new autism school, though we will try of course. Even so, given the expected timescale we're looking at at least another term of this unless it magically resolves itself.

I just want to cry and I have done, a lot.

Oh @openupmyeagereyes that is so so annoying. DS is still on his reduced timetable, no work sent home, no contact with class teacher, he's being totally taught now by his 121. Nothing in writing. Caseworker finally got back to me (i to her because I read you should when school make an ehcp child go on reduced timetable) and actually she seemed pretty pd off with the school, said she will write to them as all this should have been done formally in writing. So we've been fobbed off totally by them pretty much as soon as they realised DS was leaving next month. Argh. And to think I really trusted that school. At least he's moving soon!!
Hi @orinocosfavoritecake I don't know tbh, I think it depends on the level.of support he needs, access to sensory provision, 121 to keep focus, how he copes with Ms classroom. We made decision to try to get special place based on DS's increasing inability to cope in a mainstream school. I would also ask about therapies available and differentiated work.
DS drinks so much. Its part of his lack of impulse control I think, but he would just drink drink after drink if I let him! Which has its own challenges...!!

Oh and @openupmyeagereyes you never know unless you go for it. We were told all special placements were full. We went to tribunal and magically a place appeared...

Open it's such a crappy situation to be in. Like danni says it doesn't seem like school are doing much to support you, just appropriating ds's money for the other kids.

I agree with the LA, definitely ask for the emergency review so at least you can get the right people 'in the room' and talking about what ds actually needs because you shouldn't have to keep on doing this all by yourself. I'm not surprised you've been in tears!

At least the teacher called today, but I agree danni, it does seem pretty useless!

Hi Orinoco does ds have an EHCP? I would say that if you feel that he needs salt, OT and a 121 that you should be applying for an EHCP and requesting those professionals as part of the assessment if/when it is granted. You don't need a diagnosis for an EHCP, it is needs based.
The problem is that unless an EHCP is in place there is nothing legally requiring the school to provide a 121, so even if they agree to one, it could be changed or taken away at any point and you have nothing to back you up.

DD's swab was awful! Never doing that again! Ds seems to have had a good day at school, so finger's crossed for getting him on the bus again tomorrow!

Magrat it is so easy to be fobbed off by schools! It's ridiculous how much you need to learn being a SEND parent in order not to get screwed over the whole time! Good thing ds is moving

liv don't get me wrong. I don't think it's their intention but it is certainly working for them at the moment as they get to help the other children catch up at no additional cost. Their hands are tied too because they can't access any specialist support as they are, apparently, fully booked up with assessments. These teams clearly need more funding.

I have a call with the Senco and family liaison officer tomorrow (who is new). I will see what comes out of that. Our annual review is on the 9th so I don't think we need an 'emergency' review, we can just use that. With no specialist input into the current situation I'm not sure how easy it will be to make the case for specialist provision. Any ideas for things that we can put on the list are welcomed.

Magrat it's good to bear in mind that appeals can sometimes magic up places. I hope we don't get there but prepared to do it if necessary.

Orinoco I don't have much headspace at the moment but will try and have a think. Although, given where we are I'm probably not the best person to advise...

@openupmyeagereyes if you want special placement, you have to show how DS' needs still cannot be met in Ms even with all the additional support etc.

Sorry, posted too soon. So for us, DS cannot cope due to sensory stuff and not coping with noise levels, transitions, modes of teaching, do he was totally with 121. We argued this would not give him an inclusive ed or social experience or make him feel like part of the school as he gets older.

I often think open the specialists they have in to give advice to mainstream schools like specialist advisory services / specialist teachers etc are often not that useful because it’s not changing the environment. You can use strategy after strategy but it’s pointless if it’s the surroundings the child isn’t coping with.

For me personally, from experience with ds, the things the specialists have recommend are far too bog standard, star charts, now and next boards, own work stations, sensory activities, abc charts etc etc he’s been on them since he was 2/3 years old, if none of that worked then it’s not going to be working at 7.5.

If anyone professional recommends a star chart to me now i instantly dislike them it gives me the rage.

When he wasn’t eating they recommended he played with food to get use to textures, they made a song and dance about how this was a brilliant strategy. Nope didn’t work.

I’ve pages and pages of advice I’ve collected over the years and none of it has helped. His last EP report which was done by the senior EP in March actually stated the autism friendly strategies that they use for children such as ds have not worked and to put it bluntly she couldn’t think of anything else for his school to try! The senco said we’ve tried everything she recommended and she’s still scratching her head..

I agree there is no point booking an emergency review if you have one in a few days anyway but it might be worth asking your caseworker to link in if she isn’t planning on doing already? It’s always helpful for them to be really aware of what’s going on.

No wonder you have been crying I often cry when I can’t come up with solutions to help, very frustrating.

I wonder what @LightTripper recommends, she’s good at stuff like this

If anyone professional recommends a star chart to me now i instantly dislike them grin it gives me the rage.

I’m like this with visual timetables.

The specialist teacher is now attending our call tomorrow 🙏
No idea if she will have any better ideas but we need her involved so I am grateful. The SENco has done a lot today and it’s not even her day to work.

Star charts invoke a similar rage here.

Sorry that the schools both sound rubbish @danni0509 and @openupmyeagereyes :(

I lodged appeal to tribunal re DD's placement.

Also decided to dona short notice house move. Definitely a bit crazy here

Mum our school doesn’t always get everything right but it’s not rubbish.

Good luck with the appeal and house move.

Good luck with the appeal MumofSend.

Hope DS settles back in well Danni

Good luck with the AR (next week?) Open. I feel that we've started to collect evidence that DS needs a specialist setting e.g. OT report that states he cannot focus on concentrate in busy classroom and lower than first centile for everything. I think the fact that he is refusing to go in should be significant evidence that the current school is not able to meet his needs. It's so hard, I cry pretty frequently about DS and I do get a break Monday-Friday as it's not a struggle to get him to school.

Another day, another appointment here. DS is seeing another OT as part of his specialist adoption-funded assessment. On Friday I have my appointment with psychologist about me, my temperament and attachment - I am scared what they/I will discover!

Liv the swabs are awful aren't they. I said never again after the last time but after being screamed at all day by DS I cracked and decided to do it again to escape isolation.

Orinoco from what you wrote it sounds like he needs additional support at unstructured times rather than during the classroom. Obviously in Reception there is more moving around and opportunities for sensory experiences - my DS spent most of it at the water and sand tables. It may unfortunately be that he has more challenges in year one when he is expected to sit more. I think worth flagging up now but if from school's point of view he's doing well then it may be difficult to secure more support at this stage

Good luck with the call today open. I hope the specialist has some good advice for you!
Moving ds for us was mainly the school saying it couldn't meet needs anymore.

Good luck with the appeal and the house move mumofsend.

Good luck with the appointments dimples. Yes I think if it was ds at home not dd I would feel the same about the swab!

Ds is currently completely wrapped in cling film (his favourite activity). Hoping he agrees to get on the bus this morning!

I feel for anyone having to swab their dc. I hope all tests are -ve.

liv I hope you managed to get ds out of the clingfilm and onto the bus!

Ds has gone into school this morning, hooray. Much distraction needed from both dh and myself. If dh was not still working from home I dread to think where we'd be right now.

dimples I hope your appointment on Friday goes well. I would be nervous too but I'm sure you will be fine.

Sorry just need to have a rant and get this off my chest before I explode. Also any advice welcome.

11am I got a call off ds head teacher (he starts at 9.30, so 1.5 hours after he arrived) you need to pick ds up ASAP. He’s injured a member of staff, urinated on the staff, he’s throwing objects and he’s absolutely wild, no one can control him. So I said so you want me to come right now and collect him 20 miles away? Why can’t his taxi collect him? She had phoned them and apparently they couldn’t until allocated time and she needed him collecting ASAP. So I had to drop everything on the spot and drive to get ds. (Good job I have a fucking car and driving license isn’t it!)

Anyway back to the phone call, she said ds is having to have 2-1 support at all times and even that’s not cutting it. They need an emergency appointment this afternoon to discuss what next.

I was like wow! Ds has done 6 weeks at the school, 1 of those weeks half term / 1 week off isolating. So 4 weeks he’s done of reduced hours and they are not meeting his needs.

No idea what next she’s phoning me later today.

Well done open! Yes thankfully got him out of it in time for the bus!

Danni that's outrageous. Did they supply you with an official exclusion letter? Is ds ok?

She was like how you managing him at home? I said as I usually do, just getting on with it, don’t see why it even matters, I don’t have any other options available to me! So doesn’t matter whether I’m managing him or not really. No fucker is helping me!

His class teacher was like I’ll ring you later and was just shaking his head.

Argh!!!!

No liv, no letter no nothing, do any of them even play by the book? Bcos his old school never either.

I’ve had enough, really have x

I’m sorry danni, it’s so hard. Hopefully they can come up with a plan today. They need to bear in mind he’s been at home isolating. It’s bound to set him back

That is rubbish Danni. Is it worth putting him on the waiting list of a more asd-focused school? There was one from ages back where a teacher was playing a game bouncing a ball back and forth with your DS and getting him to make longer and longer sentences, but then the school was full.