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Primary School Auties 11: 2023 is here

1000 replies

openupmyeagereyes · 03/01/2023 07:25

Thread 11.

This is a thread for the parents & carers of children with additional needs. Most of us have autistic/ADHD children in primary school, but anybody is welcome to join us to chat x

Links to previous threads below.

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
Thread 7
www.mumsnet.com/Talk/special_needs/4303826-Primary-school-auties-summer-and-the-new-academic-year-thread-7
Thread 8
www.mumsnet.com/Talk/special_needs/4422100-Primary-school-auties-step-into-Christmas-and-the-New-Year-thread-8
Thread 9
www.mumsnet.com/talk/special_needs/4502988-Primary-school-auties-thread-9-spring-summer-2022
Thread 10
www.mumsnet.com/talk/special_needs/4592899-primary-school-auties-10-summer-and-beyond-2022?page=1

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6
Jules912 · 26/02/2023 19:25

carriebradshawwithlessshoes · 26/02/2023 17:15

Was last night any better Open?

Uno your DS is very articulate to explain all that to you, I know you say he’s no issues around things like toileting etc. from experience I think if a child presents like mine… non verbal, issues around toilet, very hyper they probably get a more sympathetic ear around behavioural issues (from school.) The more typically they present in terms of intellectual ability, language, self care skills and so on the less schools IMO will be sympathetic to behavioural issues. There’s a lad at DDs school who does have an autism diagnosis but is very verbal, articulate, no self care issues and so on but frequently acts out, for want of a better description. He is just then excluded for a week or longer because of his ‘behaviour’ on the basis he should know better. Ridiculous of course but that’s how I think a lot of ms and possibly nt people also see it.

I think DD gets seen like this to some extent, it was only when she had a meltdown at school they even suggested there might be something more. They have now put a fair bit of support in place, but while this helps a bit I think she's gone back to masking but with the improved behaviour she's unlikely to get an EHCP,

UnoQueenie · 27/02/2023 11:34

That must be hard @Jules912 . We hhink DS masked for a while in reception but after lockdown, it was like he'd had enough and couldn't cope anymore.

So in my busiest week at work, loads of stuff and events planned, I am sitting at home with covid. Duvet on sofa, boxset on, feeling very sorry for myself!

openupmyeagereyes · 27/02/2023 11:56

Oh no Uno, so sorry. I hope you feel better soon.

5:10ish am start today, which was a relief. He’s had a good morning at school too.

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Jules912 · 27/02/2023 13:40

Oh no @UnoQueenie, hope it's mild and you're better soon. I thought I'd recovered from my bout over half term but just cleaned the bathrooms and now knackered.
DD is year 2 so the constant in out of lockdown and bubbles bursting didn't help ( she liked the actual home learning but missed her friends so don't think that's suit even if I didn't work).

Ahna65 · 28/02/2023 07:40

How are you feeling @UnoQueenie ?

DD2 had a short lived vomiting bug last week and DD1 I guess has it now. She slept until 4 without waking (or without waking us i guess) but when I went to get her there was a load of dried vomit in the bed and on her hair. Happens every couple of months. Find it really disturbing - also so strange to me than when her sleep is so problematic she can sleep through that.

had a message from school that some kid keeps trying to pull her hair and yesterday he banged her head against the wall when the supervisors were turned away briefly. DD doesn’t react to pain, they are trying to help teach that. Made me sad to read.

carriebradshawwithlessshoes · 28/02/2023 10:44

Try not to worry about that Ahna. DS has a high threshold and that comment has been made about him but then if it really hurts he does get upset. Remember all kids are different anyway. It’s just a sensory thing like others we talk about. I have chased DD down corridors of Drs and she has screamed the place down over blood tests which I tell myself is not normal and she’s NT!

LightTripper · 28/02/2023 14:21

That's funny - it reminds me that I used to get called "the bionic girl" in early primary school because I was incredibly clumsy and got all these gory injuries and didn't really seem to notice. DD seems much less accident prone so we haven't really seen that but I would say she seems normally sensitive to pain - so it's a real mixture!

I really hope your DD is feeling better now @Ahna65 and that school can keep a better eye on her and the other students to make sure she doesn't get injured there again. They really do need to find ways to keep her safe, particularly when they know she might not be able to tell them if she was hurt/might not make it obvious.

dimples76 · 28/02/2023 16:52

Hope that Uno and Ahna's DD are on the mend soon.

I think DS's interoceptive sense is really under sensitive. That is part of the toileting problems he doesn't always recognise the need to go. At the weekend we were out on a walk and DS was raging or whining most of the way - he fell over, we let his cousin make a decision on the route etc. In the second half he was complaining of being cold - it was chilly but he was really wrapped up. When we had been home about half an hour I sat next to him on the sofa and realised that his sock was soaking wet (he had been wearing wellies). His feet were like ice but DS hadn't seem to register that the sock was wet- in fact he got angry with me when I commented on it. I just can't get my head around sitting in wet socks with cold feet.

openupmyeagereyes · 28/02/2023 19:03

Poor dd Ahna, I hope she’s ok. You too Uno. I use Jack Monroe’s make-me-better drink recipe when I’ve got a cold.
cookingonabootstrap.com/2014/03/11/make-me-better-morning-mug/?amp=1

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pigletpie2177 · 01/03/2023 21:36

Hi everyone, new to this board though not to mn. After a bit of a rollercoaster ride we are now "on the pathway" (or, at least, a referral has been made" and are hurtling towards an assessment next week. I've asked what we can expect - partly for me but mostly so I can prepare DS5 - but am waiting for a reply. I found one NHS trust page (not ours) which talked about child being interviewed and us being asked about history. Can anyone point me to any helpful resources/checklists etc at all? Or good questions to ask? I'm starting to feel a bit overwhelmed 😬 thank you!

openupmyeagereyes · 02/03/2023 09:07

Hi piglet. I can’t link to any resources as ours was 5 years ago now. They asked a very detailed developmental history including pregnancy and birth. You may have more luck if you post your own thread. I found discussing my child’s problems quite draining so be prepared and maybe arrange something cheery for afterwards. Good luck.

Did anyone’s dc dress up for world book day? Mine didn’t want to.

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openupmyeagereyes · 02/03/2023 09:09

Oh and the main thing I would be asking them is detailed information on what support is available and how to access it - e.g. referral or self referral - for SALT, OT and educational psychologist if you haven’t yet seen any of those.

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LightTripper · 02/03/2023 09:59

It's definitely worth calling them to ask what the assessment actually means @pigletpie2177 (and welcome to the thread!)

We had several "assessments" before we got to the final diagnostic one, so I'll tell you about both (although DD started the assessments at around 2 and got her Dx at 4, so she was younger than your DS.

In the earlier assessments we were generally all in one room with a clinical psychologist and at least one other professional (e.g. a trainee CP or SLT) and they would play with DD a bit and then the junior professional would continue to play with DD while the senior person asked us lots of questions about DD's development. So it's worth brining anything you have like nursery feedback/reports, your red book if you made notes there about when DS hit various milestones, any other notes or e-mails you have where you've talked about where DS is developmentally at various points. Then for the final assessment they didn't need to take a developmental history from us (as they'd got it all from those previous meetings), although I did send them some written notes to update them/fill in gaps. But obviously if you were only having a single assessment this developmental history would be part of it.

In addition to the developmental history they went to visit DD in nursery (I think it was an SLT who went to do that part of the assessment), and then did the ADOS at the clinic. That's a play-based assessment - just to see how DS plays and interacts with adults. We were allowed to be in the room with DD but she wasn't quite 4 at that point - although I don't really see there's any harm in a parent being in the room so hopefully that would be possible for DS too if he felt more comfortable that way.

In my view it's worth also starting to talk to your DS about it (does he understand a bit what's going on?) At that age it could be more generally about different brains working differently and different people playing in different ways (DD wasn't interested in the idea of autism until she was 7, but we'd always talked about different people's brains working differently as a reason why she was sensitive to sound, or struggled with dealing with lots of other kids at once, or was able to super-focus on one topic and become a real expert on it, for example - so by the time we gave that a "name"/"label" it was not too much of a shock).

And yes to asking them about support. We were just thrust a massive wodge of leaflets but most of it didn't seem relevant and I didn't really know how to navigate it. The best thing I'm on is a local SEN parents' WhatsApp group which is really helpful for finding out about what is going on locally and how to access local services, deal with problems at school, etc. etc. It might be worth looking for SEN parents groups where you live (e.g. on Facebook, or googling your local authority name and "Local Offer" and seeing if there are any parent support groups listed there). I remember feeling awkward about accessing those spaces pre-diagnosis, but actually in some ways that's when you need them most!

And yes definitely leave time for cake or something else nice after!! It is intense and can be upsetting. It kind of forces you to dwell in detail on negatives, so you need a bit of time to shift your brain back to positives and optimism afterwards!

LightTripper · 02/03/2023 10:02

And yes - I sent Death and Spiderman into school this morning! I'm slightly worried about Spiderman's ability to get out of his costume to get to the loo in time but what will be will be....

UnoQueenie · 02/03/2023 10:03

Hi @pigletpie2177 hi everyone!
I'm not sure anymore piglet as ours was 4 years ago now. Keeping a diary really helped us, everything that seemed different snd every adaptation you're making, so that when you get to that room and they ask 'so what makes you think there's an issue', you feel prepared to fully answer the question. A paediatrician talked to me while DS, then 3, played with a speech and language therapist. They then said he was too smiley and wanted to.play too much to be autistic (despite not really understanding much or reading facial expressions). I was also asked why i wanted to label my child, so be prepared for that. Its not a label, its a diagnosis which will allow him to make sense of who he is and access support. A year later during lockdown, we had a telephone follow up and based on school feedback and our feedback, he was diagnosed and then we started trying to get the ehcp. Fortunately we did because mainstream fell apart and we needed the diagnosis and ehcp to access a specialist setting. Anyway, keep a diary and write down everything although it feels horrible but you have to be honest about the level.of support needed. I write a strengths list about DS too that I keep for myself!
@openupmyeagereyes they don't dress up at DS' school,which I used to think was a bit sad, but then i realised that DS prefers it so. They're sharing lots of stories and having lots of booky fun apparently so that's good.

So today is one of the biggest days of my year at work and i am still self isolating argh. At least I set everything up last week so things can still run. I'm cheering myself up watching the musicals episode of Buffy. Every year or so, I rewatch Friends or Buffy. I find it really comforting. Starting to wonder if this is an autistic thing too. Ds loves a good rewatch too (usually numberblocks in his case though!)

UnoQueenie · 02/03/2023 10:09

Crossed post @LightTripper ! Lots of good advice here too @pigletpie2177

And definitely agree with local support. Our fb sen group is fab and local groups who organise events for sen kids and their families are invaluable because you'll meet parents who just get it.

dimples76 · 02/03/2023 11:25

Fortunately both school and nursery said costume/pjs/uniform so mine have both opted for pj's. I am going into DS's class later to read

UnoQueenie · 02/03/2023 12:01

Any initial thoughts on the government's sen plan? Hooray for new special schools. Worrying about making it harder to get an ehcp and the 'reforms' planned for tge tribunal service (presumably because parents keep winning...)

openupmyeagereyes · 02/03/2023 12:21

Ooh, Uno. I haven’t seen it yet.

I can give them plenty of advice on starting a new Sen school from scratch…

Oh yes, Light. I forgot dd wanted to go as Death. He’s my favourite Pratchett character Smile

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livpotter · 02/03/2023 13:34

Welcome piglet good luck with the assessment.

Uno I do regular rewatching of Buffy too. Definitely a comfort show for me.
I haven't read it the whole way through yet but I do think it's encouraging that they have realised (finally) that both special and mainstream schools are necessary.

Both kid's school are on strike today so both are doing world book day tomorrow. Ds's school are allowing kids to dress up but ds never does. This year ds's school are having normal uniform but they are all going to be making their own costumes through the day (dd is very unhappy about this).

LightTripper · 02/03/2023 13:50

@openupmyeagereyes I've given her Equal Rites and told her if she wants to be Death she needs to write in CAPITAL LETTERS ALL DAY :) Which she seemed to think was silly for some reason.

Having flicked through to refresh my memory I thought it might be a bit much for her (there are words I need to look up!) But she read about a quarter of it last night and is enjoying it so far!

I haven't looked at the new SEN policy yet. I tend to be sceptical (especially given e.g. Gove's recent statements on attendance) but it seems at least there are some good elements with the new schools. Fewer EHCPs and anything done to weaken Tribunals is a worry though, so I need to look into it.

danni0509 · 02/03/2023 14:04

www.bbc.co.uk/news/uk-england-cambridgeshire-64717079.amp

@carriebradshawwithlessshoes

specifically for carrie but maybe helpful to others too.

completely non verbal until 11 and unable to read and write until 18

openupmyeagereyes · 02/03/2023 14:08

Light she’ll take something from it and then when she rereads it later when she’s older she’ll get something else from it - all good.

dimples I hope reading goes well.

liv how is ds at going to school atm?

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openupmyeagereyes · 02/03/2023 14:12

danni fantastic story.

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openupmyeagereyes · 02/03/2023 14:16

Hmmm, Owen Meany was also CAPITALS. I wonder if there are any other literary figures written entirely in capitals?

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