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Thread 13: autism and any other additional needs A/W ‘23

764 replies

openupmyeagereyes · 19/10/2023 06:21

Thread 13. 

For parents / carers of disabled children, autism, adhd, and all other related neurological conditions. Most of us have children in primary school. But everybody welcome!

Chatting about anything and everything related to SN!

 Links to previous threads.

Thread 12
https://www.mumsnet.com/talk/special_needs/4816294-thread-12-autism-and-any-other-additional-needs?page=1

Thread 11
https://www.mumsnet.com/talk/special_needs/4711291-primary-school-auties-11-2023-is-here 

Thread 10
https://www.mumsnet.com/talk/special_needs/4592899-primary-school-auties-10-summer-and-beyond-2022?page=1

Thread 9
https://www.mumsnet.com/talk/special_needs/4502988-Primary-school-auties-thread-9-spring-summer-2022

Thread 8
https://www.mumsnet.com/talk/special_needs/4422100-Primary-school-auties-step-into-Christmas-and-the-New-Year-thread-8

Thread 7
https://www.mumsnet.com/talk/special_needs/4303826-Primary-school-auties-summer-and-the-new-academic-year-thread-7

Thread 6
https://www.mumsnet.com/talk/special_needs/4166833-Primary-school-auties-spring-2021-and-beyond-thread-6

Thread 5
https://www.mumsnet.com/talk/special_needs/3953023-Primary-school-auties-summer-and-beyond-thread-5?page=36&reply=104240251

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

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

Thread 2
https://www.mumsnet.com/talk/special_needs/3451020-Reception-auties-2018-19-thread-2

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

Primary School Auties 10: Summer and beyond 2022 | Mumsnet

Thread 10. Ooops, sorry, filled up the last thread without noticing - here we are at THREAD 10!! (How did that happen?) This is a thread for the par...

https://www.mumsnet.com/talk/special_needs/4592899-primary-school-auties-10-summer-and-beyond-2022?page=1

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openupmyeagereyes · 19/10/2023 06:41

New thread everyone.

danni I forgot you were mostly doing PA role rather than taking him yourself. It will be interesting to see if it makes a difference in his behaviour at school, who knows how/if he’s being wound up on the way there. At least half term means a break from the stress of it all.

Ds wanted to go to bed early last night, he was asleep about 7:40pm. I braced myself for a v early start but he slept until 5:30. I’m looking forward to the break, dh is off for the week too.

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livpotter · 19/10/2023 07:49

Thanks for the new thread open. 5.30 is pretty reasonable in your house!

Danni I think cancelling transport was the right thing to do. Hopefully half term will be less challenging.

Ds has done really well this week doing full days every day. But he is getting very stuck on repetitive questions and last night he was still up at 11pm so there's clearly a bit of anxiety there. Not sure if I'm looking forward to half term or dreading the break in routine.

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dimples76 · 19/10/2023 08:05

Thanks for starting the new thread Open - that was a big sleep for your boy.

Good luck Danni

Do you all break up for half term tomorrow? We still have another week to go. Next week is the dreaded bikeability. School were v dismissive of my query about it. They have said that DS can take his bike in and practice with his 1:1. But it doesn't really resolve the issue of other kids being left out (who don't own bikes/are not confident cyclists) and also if I hadn't prompted them they wouldn't have done anything for DS.

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danni0509 · 19/10/2023 12:50

Thanks open for the new thread. I’m pleased ds slept well last night.

liv I’m pleased that ds has been attending full days every day, long may it continue, sorry he’s having anxiety with repetitiveness. Especially past bedtime!

dimples good luck to your ds for his bikeability session next week, yes I agree regarding kids that don’t have bikes, they are expensive and if their parents cannot afford it, those kids just miss out? Seems unfair. Ds breaks up tomorrow.

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openupmyeagereyes · 19/10/2023 13:11

Yep, 5:30 counts as good here 😆

dimples IMO whenever schools plan an event they should be asking themselves ‘how can we make this inclusive?’ It’s not a hard thing to do.

Half term next week here.

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Jules912 · 19/10/2023 13:45

We break up tomorrow too, for a two week half term. When DS did bikeability they took them out in groups of about 15 picked from across the classes so if anyone didn't/couldn't do it it wasn't really noticeable. At least I hope so as DD also can't ride a bike and not sure that'll change by year 5.

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dimples76 · 19/10/2023 15:22

Open that is exactly my thoughts. I have sent the Council and the school a copy of Bradford Council webpage on Bikeability which is all about ensuring that every pupil can participate. My Council is probably going to list me as a vexatious correspondent soon! My 4th complaint to them in the last 4 months - but to be fair with the other 3 they have acknowledged that I am right. Really should probably drop this but it has really touched a nerve.

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openupmyeagereyes · 19/10/2023 15:31

dimples the more people that complain, the more likely they are to do something about it!

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danni0509 · 19/10/2023 21:18

Can I ask some advice? Do you think this school is appropriate for ds and more importantly do you think they are meeting his specific needs. To me they aren’t, but I’d like other opinions please.

Ive been to ds school today for a class sharing session, they have never invited us in to the class before, it’s usually the Xmas / Easter fundraiser type events in the hall we’ve been too.

So today was seeing ds ‘work’ and seeing what he enjoyed to do in the class. We came home this morning after drop off and when back early to join him in his class session.

I do apologise in advance if I sound rude at all, genuinely not my intention, please keep in mind ds level of ability, and ds is my only concern, so no offence is intended to any children at a lower level with what I’m going to say.

I arrived and ds was drawing at the table, not on paper, just directly on to the table with a big bingo dabber, he had coloured his whole face in blue dabber and literally looked like a flaming Smurf. (He generally comes home looking like this most days though, various shades of colours)

I got quite a shock at his classroom, it looked like a small prison cell. Quite a small room. And it was in such a state, thousands of pieces of dried pasta just thrown all over the carpet, pencils thrown everywhere, toys just tipped everywhere, looked like TOTAL chaos.

In one corner there was a boy putting big wooden blocks into his mouth, I spotted this and alerted dh who was next to him so I was telling dh to get them off him, and then a member of staff saw and took them from him.

One child was in the outdoor space singing ring around a roses, with a teacher.

One child was building something with Lego, and one was sat in a wheelchair with a book.

Then obviously ds, they had 4 members of staff with the 5 children.

I asked how ds had been today and she said he had had quite a few incidences,

Me and dh were asking ds what he wanted to show us and he was just running from one thing to another tipping things over and being a total PITA writing the word shit with felt tip on all the tables and then he started to shove handfuls of leaves into his mouth (they had a box of leaves they had been doing an autumn activity with) he started spitting pieces of chewed up leaf at the teachers and swearing at them, so I said right ds come show mum and dad the swing outside, as we went to go outside he charged at the boy sat on the floor and starting kicking him really hard and grabbing his hair so I did take ds quite forcefully by the arm outside at this point as he wouldn’t come willingly, the teacher came outside after us and dh said is he like this at school often? (I’m aware he can behave like this and their frequent emails tell me so too but dh wondered if we had unsettled him joining him in his class) And she said yes, pretty much he is like this a lot of the time.

ds class is split in to 2 pathways, the ones capable of work and the ones who aren’t, ds is in the class that is capable of work, in the outdoor area there are 2 doors to each of the classes, they share one outside space, ds kept banging on the other door shouting let me in and the teacher said your not allowed in there are you ds,

so I asked why? She said because he has a few children who he likes to target so they are frightened and ds isn’t allowed to be with them. He was kicking the door so hard. Dh took him away to the swing so I stayed and spoke to the teacher, I asked her some questions about the other children, what are their ages, are their needs similar to ds etc, their ages ranged from 7 to 8, ds being the oldest at almost 10. All had an autism diagnosis, none of the children had needs comparable to ds with certain behaviours and she said he required the most supervision just to ensure that everyone stayed safe, she said ds came from the furthest away and all others bar one lived locally.

I had spoken to all of the children in the room when we arrived, like I said to the boy building the Lego boat ‘wow how good are you building boats’ etc, and I asked the girl what book she was reading, none of them were verbal. I then asked his teacher if the other half of the class in that other room had any verbal children and she said no, all non verbal or pre verbal.

So 9 children plus ds split between two rooms and ds is the only one who can actually talk. He is spending 6 hours a day in a class with 4 other children and he’s the only one with speech.

I then looked at his ‘work’ tracing over letters and simple addition sheets, copying some simple sentences, just basic stuff like that.

I hope I don’t sound rude as I’m aware people don’t like the phrase, it’s outdated etc, but I’m using it anyway, it’s easier for me to describe, but ds really was acting ‘low functioning’ with his behaviours and noises he was making. It’s almost like he copies and just cannot help it. He really is dysregulated in the environment, and it’s not nice to see.

He continued rampaging after the swing, turned his attention on throwing pens and trying to get the boy who he’d kicked earlier, so I looked at the clock it was 2.10pm so I said I’m taking him home now, she got his bags and we left 50 mins early, he continued being a shit all the way to the car, kicking me and dh, gave him his tablet in the car which kept him quiet, we got him home bathed him gave him an early tea, he then had completely calmed down and acted what I would say ‘his normal self’ less of the noises, less of the behaviour, more of the ds that can have a conversation with you and listen to what you are saying. He FaceTimed my mum / then my dad, good as gold for the rest of the evening.

In that class earlier he would not listen to a thing anybody said to him, just wanted to cause as much trouble as possible,

I know why he is targeting certain children, I watched what the other children do when ds is ‘getting them’ they make lots of noise and flail about and it’s that what ds wants to provoke.

Whats the answer?

I don’t feel they meet ds needs, definitely not academically and certainly not behaviourally.

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danni0509 · 19/10/2023 21:24

Dh said take him out. We came out like wtf. I was too stunned to talk. I can’t talk around ds anyway as he listens to everything then makes his own version up, so I harnessed him in the car spoke to dh in private outside the car and he said take him out. He is still saying now I don’t want him there,

It’s not that easy though is it, it’s not like I have any other school to send him too..

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danni0509 · 19/10/2023 21:38

I don’t think the school environment suits ds, his personality is very specific in that he loves to cause trouble, he also loves to copy / mimic, he’s definitely getting a buzz from antagonising the other children and ds is getting that sensory feedback from their reaction if that makes sense, he’s been there 2.5 years now and nothings changed, he’s still causing trouble like he did right back on his first day,

he’s really dysregulated and I suspect part of the reason why transport hasn’t gone well, he came out of there this afternoon absolutely on one, so he had no chance in surviving the journey home in a taxi coming out like that did he, I had to get him a drink, some chewing gum, leave him harnessed in for 5 minutes whilst I stood outside the car to give him some space (and slag off his school 🤣) , get his attention on to his tablet by finding his favourite game, only then when I was sure he was calmer could we drive back. I wouldn’t have drove with him still in that mood, which is obviously what was happening with the transport, hence all the issues. Nightmare!

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openupmyeagereyes · 19/10/2023 21:44

danni I think you should call
the LA and tell them you want a reassessment of needs. It is totally warranted. Get an Ed psych to do a thorough evaluation and see what they think he needs. He’s not going to learn anything if he’s dysregulated all the time.

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danni0509 · 19/10/2023 21:52

His send caseworker is phoning me on the 26th to see how his new old transport is going, 🤣 so I’ll update her on that then update her on this and go from there.

I genuinely don’t know how they can say they are still meeting his needs, also aren’t they supposed to have a peer group, as in children who are similar, the others aren’t anything like ds, I really don’t think it’s fair to ds to only have teachers to talk to all day, I worried if ds wasn’t in school we wouldn’t be able to ‘socialise’ him as we don’t see any children his sort of age, but seeing today, that’s not happening anyway.

The kids stay out his way, which I don’t blame them, it just doesn’t look like he’s in the right environment at all.

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dimples76 · 19/10/2023 22:44

I agree with Open, Danni I think that you need to request an emergency review and reassessment of need. It really doesn't sound like the right environment for your DS. I agree, your boy needs peers. The children you described sound similar to the closest special school to us which I think my DS is too able (for want of a better word) to attend.

That said I really need the respite that school gives me from DS - so I know personally it would take a lot for me to pull him out without an alternative lined up.

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livpotter · 19/10/2023 22:47

I think danni that ds probably needs a much more bespoke placement. From what you are saying where he is currently doesn't sound that appropriate for him and they are clearly struggling to meet his needs.

I think open's right about asking for a reassessment and maybe you should go and look at those other schools the case worker was talking about to see if they look like the kind of thing that would work better for him. It must've been very disheartening for you and Dh to see that today.

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openupmyeagereyes · 20/10/2023 07:25

Are you sending him in today danni? At least half term gives you some time to think and discuss with the LA. It doesn’t sound like the school is appropriate for him at all.

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ElizabethBennetsBoots · 20/10/2023 09:22

Aha found you guys!
@dimples76 I hope everything goes OK. Totally agree about the bike ability course becoming exclusive if school can't or won't make adaptions.
@danni0509 it sounds like it's not the right place for him at all. If he's that dysregulated totally all through the day, then his needs are not being met. And he's most likely trying to communicate that through his behaviour, isn't he do you think? My DS often uses that type of hyper impulsive behaviour as a get out strategy, partly consciously but also its just become a learned strategy, but school are working with him to try to get him to just say he's fed up or had enough of an activity etc. So he might become dysregulated for a patch but then strategies that he's picked can calm him down, then he's more regulated. Obv it goes in waves how much support he needs (this week, I think he's had enough and wants half term but is also worried about half term so...) BUT if your DS is like that all the time and they can't help him regulate at all, and their only strategy is to put him in isolation and watch him crying out for a staff member who ignores him 'until he calms down' (which I imagine he can't do due to a need to Co regulate), then it's making his anxiety / underlying issues with regulation worse isn't it and arguably its causing him trauma there too. I guess the question is how you would cope if he was at home for a while if he ended up between schools. Finding somewhere with experience of autism with pda would maybe help? I can't remember,if your DS has pda but his need for control etc sound v familiar. I think when staff sre used to dealing with more traditional presentations of autism, they don't know what to do when their methods don't work. E.g. at mainstream, they insisted on timers because everyone with autism is helped by timers...for a pda child like DS, he hated them, and he told me afterwards that they stressed him out so much more than just a gentle 5 min transition warning. He still won't play games wit timers in them, so it has massively affected him. What are the other provisions like? Can you visit them with DS and they can meet him? Or maybe explore eatos? The sen chat pub thread has several posters doing that who are really knowledgeable.
Hope everyone else is doing oo. It is bucketing it down here. DS was not impressed on th4 school run and is now worrying about not being able to trick or treat so I've agreed to think up some party games...we're off next week too.

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ElizabethBennetsBoots · 20/10/2023 09:25

Ok, not oo! Although the typo was seasonally spooooookky! Off topic, but has anyone ever had a spooky experience? I believe in all that and can definitely feel the Veil getting thinner at the moment (shadows in corners, vivid dreams with relatives who've passed etc). Just wondered 🤔

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openupmyeagereyes · 20/10/2023 09:32

Elizabeth I don’t think I’ve had a spooky experience. Mel Robbins had a podcast episode with a medium recently, you might find it interesting.

liv hope school goes well today and half term doesn’t set him back too much.

We’ve had a pretty good half term, ups and downs just to be expected I think.

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danni0509 · 20/10/2023 10:07

Thanks all for your replies. Much appreciated 🥰

open I’ve taken ds in today, although the weather is horrendous, and I regretted going 5 minutes in to our drive, it’s a rural route mostly 60mph roads lined with big trees and the roads were covered in big branches, my wipers were on full spin and I still struggled to see. I’m taking him for a McDonald’s after school, he wants to try the new m&m McFlurry so he’s looking forwards to that, I’m just pleased he breaks up today. He has been totally fine with me taking him, no misbehaviour in the car at all.

I’ll reply back properly later just in Morrisons now getting ds shopping list.

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danni0509 · 20/10/2023 14:18

Hi all. Thought I’d post before I set off.

Its not too bad taking ds, I’m getting back into my home town for about 9.45am, leaving again about 2.20pm, so it’s leaving me 4.5 hours a day to go to the shops, clean up etc. That’s more than enough time to get all my jobs done.

Plus I’m claiming all the mileage back, so it’s paying for the full amount of fuel I use and leaves enough leftover each month to pay the additional insurance (need to up my miles with insurance, in fact I need to double it now so that’s going to go up a fair bit) and then there’s some to put aside for wear and tear (I’ve been and bought new wiper blades today which I have needed for a while)

I said the other day I get about £700 a month claiming back, it’s not quite like that, I’ve since got more info, it’s based on how many days in 1 month he’s been to school taking off any days for half terms etc, some months it will be quite a lot less than that, also no payment is made at all in September to account for no school in august. So basically I’m just going to have to get my head around it when I get the payment each month, but I’ve worked out it’s not going to cost me anything. And that’s all I was bothered about really as I can’t afford for it to cost me money I don’t have.

Anyway, elizabeth I just wanted to touch on what you said about what else is ds getting from school, and it’s something I think about quite a lot, there are some things he enjoys and is fully included in, so he helps run breakfast club every morning in the hall, he is also a member of the school debate team (this makes me laugh, ds is the last person I’d want a debate with!!) with that he gets to help school make rules and any important decisions that benefit the students. He’s recently made signs about students throwing rubbish on the floor (biggest hypocrite as he’s the worst for littering!! 🤣)

He loves his rebound therapy sessions, and his swimming lessons (when they don’t get cancelled!!), he goes to a lunch club on a Tuesday dinner, the theme changes so one week it’s Lego, the next week it will be drawing and word searches, they do have some other services they get in, related to autism, such as specific sensory programmes, he also likes the sensory garden and outdoor area (the main outdoor area is amazing - not that shared outdoor space I mentioned yesterday as that is really shit) they had it all funded and it’s got a zip wire and a climbing wall, and all sorts of other stuff, each class has a designated slot to use it each day so all classes have fair use of it, I know he likes visiting that.

So it’s not all bad. He does get included in a lot, he gets a frequent mention on the newsletters with his mugshot,

I just don’t like things like yesterday, with managing his behaviour and him being out of sorts, and when I see that going on yesterday it makes sense why they hound me by email every day, also I want him to be in a classroom with children just like him, I understand it’s a specialist school and needs will of course hugely vary , but I don’t think it’s right for a child as verbal as ds to be surrounded by children who cannot talk. I really do need to have a meeting like this as he’s been kept back in this class 2 years now, (I do know why, it’s because those classes have a higher staff ratio due to the needs, and the other classes have less staff as the ratio isn’t required to be as high, so because ds needs that higher ratio still he has been kept in that class) but they must have another solution.

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ElizabethBennetsBoots · 20/10/2023 18:43

@danni0509 that's good if you feel he's getting something out of it all. It's always a compromise I think with any setting, but it does seem odd that he hasn't really got peers and they don't really know how to manage or help him manage his behaviour.
Hope everyone else is doing OK.
Constant rain here and feeling quite wiped out but off work now for a bit! DS excited and worried about half term. I have my book club tonight so off to prep for that (if I can ever get DS up for his bath...)

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openupmyeagereyes · 20/10/2023 20:25

danni do you know how his behaviour is when he’s doing these other things compared to in the classroom?

He’d likely get to do similar activities in another school so it’s not necessarily a reason not to move him.

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openupmyeagereyes · 20/10/2023 20:26

Loads of rain here too.

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246810k · 21/10/2023 00:49

Hi all first time posting on the thread. Ds aged 6 in y2 at ms school. Echna submitted and going to name special school as current school unable to meet needs and clear he's struggling. Got parents evening after half term and wondering whether to ask teacher some questions on how best to support him until he potentially offered any special school place? Does this seem reasonable and how best to approach it? Thanks

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