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

Grouchy did their children do exams?

Yes. Most do iGCSEs and A levels, even in Scotland as the Scottish exam centres won't take external candidates for Scottish qualifications.

Another option some kids have done is the US route of SATs, which is good because there's just the two exams (English and Maths) and then the rest is done by number of hours studied. We're looking at that for DD1 as I think it would suit her better.

EDIT: I should clarify that the SATs route is more for university access.

@GrouchyKiwi i am interested. As Ahna says it’s more a lack of knowledge on my part. I did talk to sendiass about it a month or so ago. They seemed though to lead more on schools not EOTAS packages. I really wouldn’t know where to begin and crucially how to get it right. I’m also worried that once I start the ball rolling with it school will try and force him out and I could be left with nothing… and a job! I asked the OT if she works with many home Ed kids and she said virtually none so I don’t think it can be that common (home Ed/ EOTAS)? Where did you find your network Grouchy Kiwi, it’s really not something in RL I have heard of at all. Are you preparing your DC for formal exams/ GCSEs? I certainly couldn’t do that myself. I mean DD is only just turned 12. She brought her maths exam paper home at end of term. DH said to me omg I can’t do it (and DHs maths is better than mine.) I took a look myself and had not a bloody clue!!! Seriously it was v complex (and she’s only just turned 12 so chances of me educating her to gcse level is laughable!)

We crossed on posts, but can non teacher parents really educate to that level?? Am I just thick? (Answer politely please) 🤣

@carriebradshawwithlessshoes It definitely seems daunting, and when we started we weren't sure we'd continue to high school age. But actually instead of being a teacher you're more of a facilitator and your role is more about helping them with the learning rather than teaching.

So I have friends who have home educated their kids through A-levels when they themselves didn't complete high school, and those kids are now at university. They used online classes for lessons, and there are a lot of different providers for these now, some free, some paid for.

I can cover literature, history, politics, that sort of thing myself, and I did chemistry and biology through to my final year at high school (in NZ) so would hopefully be able to help with that, although if any of my three decide to specialise in science subjects I'd probably get a tutor for them if we decided that was necessary!

Local home ed networks are easily found via Facebook. You can join the national groups as well, and there are often signposts to more local groups on those national ones. Facebook is a massive resource for home educators.

Hi guys, thought I'd have a name refresh!
I know quite a few FB people in thr local sen groups who've negotiated eotas packages after school just didn't work for their kids, I.e
There's something about school that makes them unable to learn in that environment.most people seem to negotiate a mix of formal tutors, therapy like arts therapy, horse riding, trampolining, and life skills like cooking groups etc. The Goose and Carrot pub thread has quite a lot of people on there who use eotas I think. The most important thing to know I think @carriebradshawwithlessshoes is if you deregister and home ed, you're basically on your own if you then want any support like OT, SLT, etc., whereas if you have an eotas package then you stay in all the relevant systems etc. Which might be better when it comes to finding sen friendly employers etc.
DS' school only offer gcses on a case by case basis and to be honest, I can see us paying to do them at a later date when DS is a bit older. They do functional skills qualifications instead which are infinitely more useful in many ways. The rise of apprenticeships is heartening too, as its showing many more ways into work than traditional routes. I can't see DS sitting and writing / typing for long enough to take a formal exam, but maybe when he's older it might be possible if it's required. I often thing being self employed would suit him better too.
The other thing with home ed, and eotas to a point, is that you'd most likely need a very flexible job.

Lydia all good points.

Dh and I have also talked about ds potentially doing exams privately when he’s older. We need to see what this year brings with a new teacher.

Grouchy interesting re. formal exams. How do you even go about doing US SATS from the uk? Am I right in thinking that they are all multiple choice?

Yes, they're multiple choice. There are exam centres where you can sit them, and sometimes the private schools will do them too - the private school near our wee town takes external candidates for the SATs, one of two schools in Scotland, IIRC.

The other good thing about them, apart from multi choice, is that you can resit them as often as you need, which is helpful for kids who know the stuff but get stressed out by exams.

That’s good to know, thanks. Interesting too.

Hi just wondered if any one could answer. Dd was referred on ASD pathway march 2024, also suspected gdd. Since we were also referred by the school to charity who do ASD only assessments and they confirmed diagnosis. Would we still be on the pathway for the GDD on the NHS waiting list or do we need to be re referred?

Sorry Mummytodo, I’m afraid I don’t know.

No worries I will call the drs Monday as I'd hate for to have to restart again but I also think she has ADHD so I think she would need further assessment

also no knowledge on this sorry @Mummytodo .

hope all had a good weekend. Ours was quite mixed. Sunday DD was out for a change, nanny had asked to take her to a sort of massive playground / water play place as a belated bday gift. Unfortunately huge meltdown so she only stayed 20mins (I feel bad because it’s expensive but I don’t think she would want paying back) but they went out elsewhere on the bike. Meanwhile DH and I went for lunch with DD2 at the beach. Although this one a one off with this nanny I guess it felt like a bit of a test case as we have been trying to explore having some weekend help with DD1, and had a chat with someone this week who has quite a lot of SEN experience (used to work at DD1’s daycare) and we felt quite positive about having that extra support semi regularly. Anyway although it was very peaceful and nice with DD2 we both very really guilty and found it a really strange feeling not having DD1 there (even though she would have had a nice time with the nanny). Made us question us doing it regularly, although I guess we’d get more used to it. I think none of you really have regular out of family support / carers, right? It’s hard because we are finding DD increasingly challenging but then having this time off just brought up so many hard feelings.

Ahna I think that it's bound to feel strange at first. DS has recently started going to a SEN group which is for 3 hours once a fortnight on Saturday mornings. He has been going once a week in the hols. It has been great for DD and me and DS really likes it.

DS has been v challenging the last few days - he always is after we have been away. LD nurse from CAMHS came to see us today - talking about DS's behaviour and particularly the violence which has ramped up recently has made me feel even lower. I am going to keep a record one day this week of every time he is aggressive. From next week CAMHS are going to call me every week day for a fortnight to try and understand what is going on.

But the frustrating thing I'd that I still haven't got an ADHD meds appointment and they still say I have to do a course first which I don't have an invite to. Looks like the earliest I will get an appointment is January which will be 4 years since DS was put on the waiting list and over a year after the assessment.

I really worry how we're going to get through the rest of the hols if it continues like today.

That’s hard @dimples76 - you mean a record for one day of every time? Is it literally multiple times every day? So so hard for you

im glad the fortnightly club is going well. How many in the group?

that waiting list is terrible…

Yes, unfortunately Ahna as this is a bad patch it is several times a day. Today, at a guess I think that he hit/shoved/tried to bite DD at least 20 times. And on top of that he was screaming, shouting, insulting and threatening me. I feel do bad for DD, worried about DS and absolutely exhausted.

That sounds so stressful dimples. The waiting list situation is a travesty.

Will there potentially be support from CAMHS at the end of the two weeks, once they know what's going on? Because that sounds like a lot to have to keep up with.

Sounds unbelievably hard @dimples76 .. truly hope the patch passes asap. I think with the holidays you just need to take day by day otherwise it will feel so overwhelming.. any more holiday clubs coming up?

Thanks Ahna and Grouchykiwi. My log of today so far makes v depressing reading. Yes, hopefully, CAMHS are meant to use the information to support us ...But I am not convinced how helpful that will be as they seem to be into things like reward charts (which have never worked with DS and strongly advised against by our therapeutic social worker from post-adoption).

I have just started listening to 'How not to murder your ADHD child' on Audible. Maybe that will help. We are out with friends today and DS will probably behave v well in front of them ...so hopefully that will be some respite. And thankfully he is at the SEN holiday club tomorrow morning.

Hi all. Mindful that this thread is nearly at capacity!! Seems to still be working for now, though.

We had another visit to DD's possible next step place. The day care type place, also the same place we viewed for overnight respite (different part of the building). Was kind of as expected. As we already knew, facilities are decent in terms of small groups, plenty outdoor space, sensory rooms and all that, lovely staff. They said an educational psychologist comes in once a week (but realistically I reckon that translates to around 1 hour for each kid every fortnight, or less tbh), and they wanted to emphasize that progress / learning can happen in a sense. But it was, as expected, very clear to us that it's not an educational environment. E.g. a sample agenda might involve time in the ballpool before lunch and then sandplay in the afternoon. SALT sessions in the same way as she would have at current place but the whole approach is not at all intensive in any way. We mentioned she's still in nappies and the woman said yes all kids here are - we found that pretty bleak, just to kind of accept it and not try? We just feel like we might be closing doors for her in putting her in such an environment, but equally we can't force her into a SEN school (I dont think) unless they accept her. We need to shortly get an exemption now that she's 5 and not attending school, as that's effectively illegal here. But now I'm worried about the implications of having an exemption and wondering if we are better not. It's a minefield. I dont think there's any options we are missing and I do think it's just so hard to place a child that is NV and doesn't follow instructions etc, I get that - I also cant see it working for her at anything school-like. But I can't help but thinking there must be something more outside the box, I dunno. But then (unlike you for example @carriebradshawwithlessshoes ) we have also made no real progress in her "learning" in any way at home, so it's not like I think one on one would be the magic bullet or anything like that. We have reached out to a couple of educational psychologist type people for a chat but I don't think they will be able to advise much at her age and stage. There was a recent report here from the national autism society of NL noting that the number of autistic kids out of school is increasing, saying that this is putting their development at a standstill. This is partly kids like DD who are out of the system (with an exemption not to attend school) but also kids that can't get along with SEN / mainstream school. And I could also very much see that happening if we tried to push SEN school, which could be way worse for her (and us, tbh) as a scenario. But I do worry that in e.g. 5, 10, 15 years, we will look back and be like, did we sell her short, was there really nothing else, etc...

Sorry, stream of consciousness from me. I WISH I knew people like you guys irl. How is everyone?

Ahna is it you that doesn’t feel the SEN schools are right for dd or are the schools saying this? Do they not have other nv children?

dimples did you get to have a conversation with CAMHS re. ds’ aggression?

carrie has ds had more sessions with the OT?

We are good, ds is doing really well. Lots of screen time but we’re getting out and about too. We’ve met up with various friends this week and all positive so far.

@openupmyeagereyes her current daycare are saying this, when we have check ins with them about her next step. We have looked at some other SEN schools but the one that the current daycare is connected to seems to have the biggest range actually, in terms of kids with quite signficant challenges. I think although there are some NV / nearly NV children, they can follow vaguely the form of a lesson. Although you raise a good point tbh - I'm not sure specifically what it is that makes them think DD cant be there and others can. I think perhaps a sense that she has more severe learning / intellectual difficulties, as they would call it I think? But then she can't play ball in an IQ test or anything, and I dunno, it's a bit chicken / egg then if those types of kids are not really being given many opportunities (although I suspect a large chunk of a lot of SEN schools is also more on the "care" / playing side of things? It's probably not a clear line I suppose)

THat's great that all is going well @openupmyeagereyes ! We wish DD would like some screentime again.. can't find anything that interests her, it's a shame!!

Have you spoken independently with the staff of the available schools? If not I would do that and put a pin in what the current staff are saying.

@Ahna65 DS' school are v play based and lots of work around independent living skills and conversation skills but they still do maths, phonics, history science etc and tailor thr levels per child.
@dimples76 hope you managed to have a helpful convo
@openupmyeagereyes glad the hols are going well
Hi to everyone else!
We are doing OK, went to a farm type place yesterday and off out to a summer show type thing today. DS has his birthday soon then we go on holiday so his excitement is ramping up. Just looking forward to going now!!