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

Happy Mother’s Day to you all. I have had a card, chocs and flowers and ds has helped make the coffee. I’ve seen my mum too. Happy days.

Thinking of you liv if you’re reading, and anyone else who might find today hard.

Ds now referring to everything pre-millennium as ‘the 1900’s’ which I know is technically correct but makes it all sound really old! ‘Mummy you were born in the 1900’s’, ‘was that in the 1900’s’ etc. etc.

He’s also become rather a back-seat driver which in my annoyance I pulled him up on yesterday. Since he can’t drive and knows nothing about it. ‘You should have parked more over there’ (couldn’t because of bins), ‘just go round’ (the queuing cars) and so on.

I hope everyone has had a good week so far. Not long until the break.

This made me laugh I know it's wearing when it's your child and relentless, but it is also quite funny. My DS is very similar!

Ha yes I get ' in the olden times'a lot! E.g. mummy, did you have light switches in the olden times? It must have been hard in the olden times without WiFi etc! Like nope, we just used to look stuff up in books!
We are pootling along, DS has own clothes day tomorrow which he's a bit stressed about I think, but a recent dentist visit went well. I'm looking forward to the weekend now and then not long left till the easter break. We're going away then too, so a bit more to look forward to!

Interesting that you all seem to look forward to weekends and school holidays. I'm sad to say that DH and I don't, really They are such hard work. I mean, I'm looking forward to some time off work, seeing family around Easter, and hopefully some better weather. But more time with DS is not something we relish I'm afraid. If he's on good form it can be lovely but I've fallen into the trap of looking forward to time with him and then the whole day being really painful. It's easier when his younger sibling is at nursery but solo parenting both of them is NOT FUN.
i haven't booked him into any holiday clubs yet but will need to do at least a day or two because DH and I don't have enough annual leave for the whole 2 weeks. He doesn't like holiday clubs and I try and book him at the same time as a friend if I can manage it, that helps a bit. The guilt is strong, though!

I really want to go and visit my brother and nephew - they live abroad and nephew gets on really well with DS - but DH dragged his feet about booking it so I've been stressed about whether we are actually going or not. It's expensive and DH says there's no point spending all that money when trips away with the DC are such hard work and not fun

I have another back seat driver here Open. He is always telling me to watch out or that I'm going too fast or too slow. Normally DS sits in the front and sometimes tries to wave pedestrians across the road, gestures to other drivers etc. I tell him not to do that and if he doesn't listen then move his seat to the back again. But in the back her frequently hits DD so then I move him forward again and round we go again. I asked him if he knew what a back seat driver was the other day but even after my explanation I think he still thinks that it was a compliment!

ElizabethBennett'sBoots hope that the non uniform day isn't too stressful. Well done on the dentists. I need to make an appointment for mine.

Namechange30 if it makes you feel better I am not looking forward to these hols. My Mum and sister are going to Australia and the SEND holiday club DS normally attends is not on (the Council has changed the funding) so there won't be any respite for me. Re going away I think it's very much about managing my own expectations. Yes, it's normally tiring but I think the different experiences/people are good for us all.

even after my explanation I think he still thinks that it was a compliment!

NameChange30 you’re definitely not alone feeling like that, it really depends how hard work it is compared to term time and how dc manage the change.

For us, ds is mostly easygoing so it’s not too much of a problem and I enjoy not having the school run. It’s not perfect in that we don’t get to do all the stuff I’d ideally like to, as ds can be quite resistant, but we enjoy it and dh will have a week off too.

Elizabeth I hope the non-uniform day goes ok.

Long awaited phone call here. CAMHS - DS has now been diagnosed with Autism, ADHD and Learning Disability. His care is being transferred to the LD team who will discuss where we go from here including medication. Feeling sort of happy, bit sad and rather shell-shocked (which is weird as this was my diagnosis of DS).

dimples glad you’ve finally got some answers. Hopefully it will give you some options. Take it easy tonight

Thanks Open

Glad you got the call at last. I felt the same when we got the call about DS (diagnosed with autism). Although we were expecting it - it's why I pushed for an assessment, after all - it still feels like a really big deal when a health professional actually confirms the diagnosis. Do give yourself some time and headspace to process it, if you can

@NameChange30 i do know what you mean. We are away for a few days and honestly I don’t think any of us are enjoying it. Often feel the same re weekends, or if it goes ok it’s almost a surprise. Today I’m feeling particularly negative though.

@dimples76 hope youre doing ok , expected doesn’t make it easy.

Hope everyone had a good weekend!

Evening all, how is everyone?

I'm meeting DS's SENCO tomorrow to discuss his diagnosis and next steps. Need to prepare for it tonight, work out what I'm going to say and ask for. Any advice would be much appreciated! I'm feeling nervous about it. Previous meetings have been hard work... I am really hoping she will be a bit more helpful now we have a diagnosis but don't want to get my hopes up too much!

dimples
How are you doing? I feel that I'm still digesting the diagnosis several weeks later.
Sorry you're not looking forward to the holidays - that does sound tough with no respite. I hope it will be easier than you expect.

Ahna
Sorry you haven't been enjoying your trip away. Is there anything in particular that's been hard, or just all of it?! Hope there were some good bits at least.

@NameChange30 think one of the things I found hardest were the increased meltdowns. They don't happen multiple times a day at home anymore but they did during the trip. Was hard to see her so upset and stressed when we had planned it in a way we hoped she'd enjoy. Sleep was also really bad and it makes you question why you are spending money and annual leave days to be on 'holiday' ha. She did settle into it a bit and we had some nice moments but overall I found it really hard. DD2 loved it whihc was nice but also starts to emphasize that increasingly i think they need different things in weekends / trips, maybe we will split more.

Had a check in at DD's school this morning - I say school, but I guess it's more daycare or whatever. The age group there is 2-6 ish, usually children move earlier around 4/5 to a more structured (SEN) school. There is a SEN school attached and we had assumed it would be the next place for her. They didn't say today that it was definitely a no go but they said they just don't see school being possible for her unless something changes a lot. Their suggestion / expectation is more of a care facility type place (which we did look at when we were looking at night respite) but in terms of any sort of 'education' it's just not at all really. Nothing like a curriculum and I think just really more playing. But then I do take their point that DD in any sort of formal lesson context is just not something I can picture at all. DH and I felt pretty depressed by the chat though. Makes me really think is there nothing more we could be doing to improve the situ.

Hope everyone is OK are some of you on holidays this week? We don't even have Friday as a bank hol here!! (Monday though).

@Ahna65 school needent be formal lesson placement?? And what is education? Isn’t play based learning education? Isn’t life skills education? Isn’t gross motor work to improve fine motor education? Certainly here there will be schools for children with SLD that ‘educate’ them in a way at a level that’s appropriate for them and which will hopefully in time push them on to the next level. And teach valuable skills whatever they are and however they look. Not a ‘care home’. At 4?? Congratulations for not walloping them over the head with a large and heavy item. Im not sure I’d have managed it!!

is this some weird NL thing?! 🙄

No to be honest @carriebradshawwithlessshoes that's prob more my paraphrasing / translation. I am sure they do look to cover certain skills / life learning type stuff, certainly play. I guess to me a huge chunk of what I would have hoped for in a school / education is the traditional reading, writing, numbers - elements of the "curriculum" so to speak. The SEN school is also partly play based certianly not all lesson learning but they just dont see it as fitting her (at least at the moment, who knows in 6 months).

Not sure how the system differs from UK (if at all), I guess there are nuances between all the SEN providers (whether more "school" or more daycare / care type in focus). Have viewed various and the lines are pretty blurred. And maybe I'm being too negative about the place they are thinking of for her, but I don't love the idea of her going there because she's not meeting enough standards for the SEN school (which was already kinda something to get our heads around, a couple years back). It's a constant journey of acceptance feels like - just when you think you're there...

Ahna sounds like a bit of a translation issue? I can totally sympathise that it’s a bit gutting and another thing to get your head around acceptance-wise. As carrie says, I think it’s just learning in a different way. There will be elements of the curriculum that aren’t covered but I’m sure they will still cover numeracy & literacy in a more accessible way. It also doesn’t preclude her moving later when/if she makes progress. She’s still so young.

In the general SEN schools near us they tend to group children by ability more than age and they do work activities accordingly. Ds’ school has mixed year groups too, 3/4, 4/5 etc.

namechange30 how did the meeting with the SENCO go?

Ds finishes on Thursday. He’s doing better at school at the moment, which is fantastic. We are looking forward to the break though.

Thanks to whoever mentioned the PDA Society (I've been trying to find the post but can't, sorry). The info is so helpful; I keep nodding and thinking "Yup, that's DD" to pretty much everything there. I've been trying some of the techniques suggested and it is making such a difference.

We're going to shift into more of an unschooling type of home ed, where DD will be pretty much in charge of her own education. This should hopefully reduce demand on her and make it easier to learn.

Hi All,
New here 👋🏻
I've got a 4yo starting school in September. Part way through getting an ASC diagnosis and I would guess we would also get a SPD diagnosis too. We're based in South west and I'm looking to connect with other parents, anyone else starting school soon? X

That does sound like hard work and quite familiar, too. "it makes you question why you are spending money and annual leave days to be on 'holiday' ha." Yes, absolutely! I still want to go on holiday so I will carry on obsessively researching and planning to try and get it right. It's a tricky combination when you put so much effort into it but then have to try and have zero expectations.

About DD's school, I can understand why you'd feel disheartened by that conversation. What's the system like there; do you have the option to visit different settings and see which one might need DD's needs best? Is there the equivalent of SENDIASS to advise you?

We're not on holiday yet - Easter is early this year and our Easter holidays start on Good Friday, with 2 weeks off school after that. I'll be on annual leave from Thursday (school finishes early that day) and have next week off too. I'm working the second week of the holidays and have booked one day of holiday club for DS - I was pleasantly surprised that he seemed up for it (it's a "tech camp" and right up his street) but I know he'll get increasingly anxious as it approaches. Anyway, apart from that I am looking forward to it a bit more now; I've planned a couple of things to look forward to (even though we didn't manage to organise to visit my sibling abroad this time).

Thank you for asking. The meeting went well, which was a welcome change - DH and I were pleasantly surprised. I think the diagnosis has made all the difference to the SENCO's attitude and thankfully she is taking us seriously now. She has added DS to the SEND register (which she was not willing to do before) and we had a productive discussion about extra support they could put in place for him. Nothing drastic, as he is doing well in school - at a cost, but they don't see it - but some minor changes which will help I think. And I'm just happy that it feels more like we're on the same side now rather than fighting her.

GrouchyKiwi there are some good examples of how to use special interests and choices for teaching PDA’ers in the book A teachers guide to PDA. I also have the book A different way to learn which is about neurodiversity and self directed learning, though I haven’t read it yet.