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

[openupmyeagereyes]

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

I don’t think teachers in ms want to accommodate Sen kids beyond the ones who maybe have only nuances of working better in a very regimented environment so are suited to a ms school of that style. Ones who fall further from the NT tree are less tolerated. From my observations of the children with additional needs that I know or who I read about all, in certain circumstances, display some sort of different to NT children behaviour and it’s that behaviour that ms teachers either (a) aren’t skilled enough to manage or (b)don’t think they should have to manage. I think the emphasis is on (b) in a lot of cases sadly. They don’t see that as their job. In DS old school they would just remove as in, walk around the fields/ school with them and thereafter suspend.

uneventful here! Some Dales walking then torrential rain started so we rushed home. DS is hard to occupy in the house as said prior. Makes winter so much harder.

@danni0509 i keep meaning to ask you, are you finding DS more regulated at school since you started driving him in? Any change? It would be interesting if there was…

@Ahna65 any progress with the sleep meds?

@ElizabethBennetsBoots ooo sounds very exciting, keep us updated re the interview. Nothing to lose going for the interview at least?!?!

Congrats on the job interview ElizabethBennett'sBoots and good luck!

Out of nowhere DS's attitude to learning with me seems to have changed. This morning he came to the table as soon as I called him to do his homework and when he was reading to me at bedtime he didn't want to stop. It's a bit of a change to put it mildly!

Elizabeth congrats on the interview. I hope it goes well and gives you some options.

dimples long may that last! Thankfully ds doesn’t have homework yet. I think once he’s in secondary.

Re. the schools discussion, I think it comes down to what we’ve talked about before for lots of schools. The right kind of SEN. If they are fairly compliant, mask or internalise then it’s ok as it doesn’t cause the school much bother. Some schools do seem to actively push SEN children out. This was not our experience but I know it is for many.

dimples I was also going to ask if you were going to say anything about the choir? It sounds bad, doesn’t it but maybe there was a context, eg ds saying silly words or something. I hope it’s just something like that anyway.

Open and Carrie re the choir, on reflection I think that the most likely explanation is that the teacher was videoing the choir and perhaps later decided to use just the audio (with images of yr6 artwork). My photo permissions do not include Facebook so I think that is probably why he was not standing with the others-- not so sure about the not singing part but I guess if he was standing by her, his voice would be dominant on the recording. If that was the case it would have been better to ask him to stand at the back (he is the shortest child in the choir). I am going to see if I can see the c hoirteacher at pick up and ask how he is getting on

Help I’m really stressing.

as you know I’ve not been happy with school and lack of progress and I suspect they are not terribly happy with this. I’ve in the past asked if they feel this is the right setting and they have said yes. Bear in mind it’s a complete mixed bag from SLD to the other end of the scale. I’ve in the past mentioned home learning to them.

anyway they have just called and said they remain concerned about the discrepancy between what I have shown he can do at home with me (or in school with me) and how he generally presents to them. They want an EP assessment with a view to then deciding next steps. I asked what that meant and she referred back to my comments on home learning (amongst other options which she didn’t elaborate on.)

i don’t know if anyone knows much about this but obv as you know I work, I’ve just increased my hours etc, can they just throw him out and how would I work if he’s ‘home learning?’ . And given that this is a full range school what would be any other ‘option?’. I’m also really worried what is going to come out of the EP assessment…just have a really bad feeling about it all from all angles.

carrie the EP assessment is a good thing. It will help the school better understand how to engage him with academic work and how best to support him. Why are you nervous about it?

From the school’s POV I can see that if the parents have been unhappy about lack of progress and questioning whether it’s the right setting then they might want to look into this more themselves. It doesn’t mean he’s suddenly not going to have a school place as the LA still have a duty of care towards him. The fact that you’ve mentioned home Ed perhaps means they thought it was a possible option for you.

The most important thing is that your ds is in a school that is the best place for him to be. If it’s not this school maybe it’s another?

I think we’ve been through this before, but have you looked at all SS options within an hour’s drive, including independents?

Agree with @openupmyeagereyes , on the face of it it seems like they’re responding to your concerns. I can only assume any home solution would have to be a choice by you too - surely a school can’t push that.

no progress on sleep meds yet, have appt with a specialist in a couple of weeks. Had a bit of a down weekend but feel a bit better today. Have a wedding coming weekend which I’m dreading, although DDs will only stay for the daytime bit (my mum is coming to do the evening babysitting). DD2 is a bridesmaid but DD1 was not asked, even tho I understand why, I have been quite pd off by the whole thing and I’m struggling to get excited for the wedding.

@ElizabethBennetsBoots good luck with the interview. I decided in mine to be very open from first round that I needed some flex bc of home life - of course you will do / say what’s right for you, but it saved me worrying about how to raise it later on or worrying if the job was realistic .

@Ahna65 we had the same situation re the wedding, my cousin got married in Spring, DD was a bridesmaid, there was mutterings of DS not being a page boy. However I knew it was right for him (I understand 2 girls may be different) and it gave us more flexibility. We took DS home when he had had enough and DD stayed over with a relative. Try and enjoy what you can and DD2 will want you to be happy. DD 1 may really enjoy herself, bridesmaid or not. Some kids even NT ones aren’t into that sort of thing, it’s not their bag, and it’s a big thing for even a NT little 4 year old. You don’t know DD1s path and it’s likely there will be many opportunities in the future for her to have such a role if that’s right for her at the time.

Open you are a very good calmer downer, consider this your career in our next life. 🙂. What am i worried about? That she says he’s the worst child she’s ever seen with SLD who will never live independently or the like. That would finish me off. Right before Xmas too, how lovely would that be. Yes, we have talked about schools, I just don’t see what he could get elsewhere that isn’t offered here. It’s a small class size and so on. There is an independent one but as per previous comment I’m not sure what it offers beyond this one plus you would be surprised (or maybe you wouldn’t) at how many SSs won’t take a NV child. Need to be careful re the home thing, the Head mentioned ‘home ed’, on a Google search that is home Ed where the parents are fully obligated to educate as opposed to an EOTAS package which is named in the EHCP. The head even suggested we put off his AR which is upcoming, is that so they can say following the EP report that they can’t meet need?

all kicking off the week before Xmas too. Really stressed……it genuinely feel like nothing works out for him (or us). This bloody school was supposed to be a lifeline for him (and us) and whilst I am genuinely not happy I can’t help but feel better the devil you know…

It’s well documented that NV children are more often labelled as having SLD (and find it hard to participate in any EP testing.) I don’t want that label for him. This is giving them an opportunity to do that.

I have found in the past that ‘assessments’ are often presented as a good thing in that they could bring about something positive for DS. In reality tho all we get when he’s scrutinised is shitty, depressing reports, some of which historically I’ve hardly been able to read. Nothing positive has come from it. It’s just made me very nervous.

If they do a proper assessment, including cognitive, then it should be both a quantitative and qualitative evaluation and report. I would tell the school and EP your concerns about him automatically being labelled due to being NV.

it’s highly possible that any report might highlight a very spiky profile with above average areas (based on what you’ve said about maths etc.) and below average areas, maybe processing or verbal reasoning for example. I would prepare yourself for that.

Re. other schools, I thought you were keen for one where he might be put with similar level children rather than doing playgroup type activities? Is there anywhere that might be doable? In any case it might be best to see what the assessment shows as it may be a non-issue.

I agree with Ahna that they couldn’t force HE/EOTAS on you, though school could say they can’t meet needs which you could challenge.

Have you ever had useful advice from MN’s on SN chat who have older NV dc? I feel that as none of us are much further ahead of you we’re of limited help.

I can relate to the awful timing. Ds was diagnosed the week before Christmas. It was tough

If they are definitely going to do this assessment soon then it makes sense to delay AR as the EHCP can then be written based on a better informed view. It doesn’t mean they won’t keep him there.

@openupmyeagereyes by far the majority of posters with older NV children talk in doom and gloom terms, I don’t need that. If there are any reading this who want to disagree please tell me!

The appropriate peers thing is very chicken and egg. Yes I do want him to be with those peers but until his presentation in school is different he will never be so whether he is more capable or not becomes irrelevant iyswim.

You’re totally right re wedding @carriebradshawwithlessshoes , I think I was just irritated they didn’t let us choose (but expected us to be somehow honoured that DD2 was ‘selected’.. although tbf she will love the whole thing probably)

I understand your worries and I also hate reading those reports. Keep us updated. What does DH think about it, does he share your fears?

the problem I gusss with a different SEN school is you’d have to weigh any potential benefit against the probable downside of settling in. And so much might depend on the luck of the draw in terms of the allocation of kids in a class at any given time. But I’m sure you feel (and it’s probably true to a point, and we probably all feel it at different points) like these decisions are critical to DC’s future. Keep us updated and you know you can voice any worries in here even if we don’t have answers as such.

The thing to remember is that no decisions are permanent. What school best suits their needs now might not be the same in the future as they grow. It’s not a life sentence, just something to keep an eye on and evaluate annually.

@Ahna65 DH is unhappy with the current school and situation. He said it can’t go on like that. I don’t think he is esp nervous about the EP because anything said would be in one ear and out of the other but he knows how affected I am by these things and wouldn’t want any upset esp at Xmas. I think that influences very much how DH approaches DSs situation. I on the other hand get annoyed how he just takes it all in then merrily gets back to work/ wants to jump into bed. It really grates esp the latter when it upsets me so much.

@carriebradshawwithlessshoes might this be useful? https://research.manchester.ac.uk/en/studentTheses/an-exploration-of-how-educational-psychologists-and-other-profess

carrie what’s so untenable with the current school situation? Are they complaining regularly about ds’ behaviour? In yours and your dh’s opinion what should they be doing that they aren’t? What do you think your ds needs?

Thats a genuine question btw, I’m not trying to be goady.

Ahna I get that must have really stung about the wedding.

Carrie, I agree with the others that it makes sense to delay AR if EP report is not going to cause a long delay. I get the impression that you are more disappointed with the speed of your DS's progress than with what the school are doing/omitting to do. If I remember correctly before your DS moved/in the early days they were perhaps (in hindsight) a bit too optimistic about what could be achieved in a short period of time.

DS was assessed by a new OT today (same company that had been providing OT through EHCP but this is through Adoption Support Fund). She just gave me 10 mins of feedback at the end but it was pretty depressing too. She observed that I had certainly not overstated the concentration difficulties and from that perspective DS was one of the most challenging children she had worked with. Then DS told me that there was a projector screen in the therapy room - they are his no1 obsession at the moment so I am actually amazed that he actually followed any instructions. She is going to set up weekly sessions for DS and me with her.

Thank you for that @SalmonWellington .

Open I know you aren’t, don’t worry. Let me try and explain. So in ms it was awful. He would just run around all day and stim. Wouldn’t engage with anyone or anything. Just sort of completely self directed, but not even sitting to focus on things to his own interest as a lot of asd kids want/ do. Even with wobble cushions/ movement breaks and all that jazz he behaved the same. By stimming I mean squealing, picking things up to flap, mouthing things. That’s al he did. Literally. They just used to walk him around the playground. He didn’t have meltdowns, he wasn’t violent, he didn’t throw things but that behaviour wasn’t conducive to them achieving anything really.

agsinst that backdrop I went into school with him and worked with him at a desk, on the floor and he did that, nicely. Apparently the second I left he was back to his old behaviour. I had my videos of him working at home.

The SS seemed very unfazed by this. Said they had seen it all before, I shouldn’t have to be doing the teaching. Assured me that what they would be doing/ able to achieve is..

1. regiulate him via OT and their strategies so that he would engage, ideally sit and engage but engage;
2. provide a smaller class environment which would be more akin to home, where he was comfortable etc;
3. have expert staff and strategies to allow him to show his potential.

Now I’m not saying they aren’t doing all that, perhaps they are, but they still report the fleeting attention/ running/ stimming/ non engagement. The ‘windows’ of showing a pretty high level of skill where they all go omg are there, but then the window closes and he’s gone again. Sometimes for days before they see it again.

im not sure what I want them to DO that they aren’t, which is why I’m reluctant to look at another SS, I suppose I just thought based on all that they would have been able to identify and seize on some interests (to engage him), regulate, connect with him better. Bring out some positives in him that meant the negatives fell away (at least more than they are doing.)

from all that I suppose I hoped for some achievements but they haven’t even been able to get the basics from him which we have just found really really disappointing.

does that make sense?

They don’t complain as such but I do get a lot of ‘DS has been very unsettled today.’ ‘DS has been very up and down with his mood today.’ ‘DS has been very upset today, we are unsure why.’ ‘DS has put a lot in his mouth today.’ It all boils down to the same thing.., behaviour not terribly different to ms!! And we are just fed up of if when everyone told us his he would flourish in a ss.

Think we crossed there Dimples.