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

Sorry to hear about the sleep.. @carriebradshawwithlessshoes that swaying feeling you describe is so familiar! I’ve had a crazy couple of work days away, very long and intense days but kinda nice to be in that mode like old times for a change. I now have a 14 hour flight home and I plan to sleep for 12 hours 😂

I hope that you're having a good sleep Ahna!

DS loves the cinema and theatre but it also makes him anxious. First time we went to the cinema he went to the toilet 12 times (so I always book aisle seats!). Super Mario movie last year is the first time he has sat through a film at the cinema without asking to go to the toilet.

Inside Out 2 was great.

I hope everyone had a good weekend.

Hope everyone ok?

Bit of survival mode here! Horrendous night Friday (3am start to day, then didn’t go down until 11 Saturday…) and last night (1-5 awake) and such huge huge meltdowns. Volume is next level. Nanny said in the playground this pm she was trying to head but other kids until she intervened which is a first. Hard patch…

so yeah all a bit depressing. It’s having quite a negative impact on me and DH, I know we should cut each other some slack but we aren’t seeming to atm. Hopefully a phase.

sounds like she slept ok ish whilst I was away, which is good I suppose but it’s just unpredictable.

Ahna did you sleep while you were away? I hope that you did.

Totally understandable that you and dh are struggling to give each other slack. Sounds like you both really need to find a way to carve out some time to fill your own cups up. Remind me, are you both working FT?

Where are you at with the Drs @Ahna65 ? I know they sounded to be quite exploratory with tests etc at one time when you wrote. I’m not saying there’s a magic pill but they seemed to be more forward thinking than our useless nhs…?

I had pretty long working days on the trip @openupmyeagereyes so not necessarily more sleep but it did feel like a break from the mental load of home life. We do both work full time and in general our jobs somewhat energise us I guess, we both really like what we do, also have decent flexibility. My manager is often stressing that if I need to say on a given week I’m only working 3 hours a day for example, that’s ok. He’s very understanding and knows I will produce the output one way or another - I’m lucky in that respect.

@carriebradshawwithlessshoes they haven’t responded to my last emails asking where we are at. I think they have kinda run their course with the initial tests they had planned although even if that’s true they should at least say so. Feels a bit like we’ve been ghosted. As you say it felt hopeful but now I feel a bit like they are also a bit as a loss , as some others before have been.

luckily a better sleep last night but a hard evening beforehand.

one positive to share is that her swimming lessons are going very well - she’s able to swim unaided for quite good stretches although mostly prefers to do so underwater drinking loads of it in the process… she’s also been using flippers last few sessions which has gone well.

how is everyone else?

Ahna ds started to swim underwater first and he still swallows loads!

@openupmyeagereyes i guess it gives a different sensation being right under. In the pool doesn’t matter so much but in the summer we like going to the lakes in the dunes and I think that’s better avoided now.. she could get pretty sick from the freshwater water i reckon.

I understand that work is important. Hopefully you can find some ways to give yourselves some downtime both alone and together so it doesn’t feel
so much like a grind. Throw money at the situation if you can.

Ahna sorry to hear that you're going through a difficult time.

DS has been v unsettled since visiting his new school. His current mainstream school is taking the brunt of it at the moment and they are getting a flavour of the behaviour that he normally reserves for home. More problematically he seems fixated on a girl in his class who he keeps touching, hitting and kissing despite her repeatedly telling him to stop because she doesn't like it. His last transition visit is on Thursday. I would have taken him out of school but my annual leave is all accounted for so I would need to take unpaid parental leave which would cause problems and there is the small matter of the thesis (hopefully Friday is submission day).

Received reports for my 2 today. DS is same as usual. First one for DD - not meeting expectations for most things including social skills emotional regulating, reading, speech, writing and maths. Just a few for meeting around imagination, creativity and motor skill. So not the most uplifting of reads.

Taking DS to Six was great. He loved it and was charm personified. I had so many compliments on his behaviour.

I am so very tired now!

Hi all! We are OK, took DS to London at the weekend and he coped really well and had a nice time despite the crowds and the rain. He's getting anxious about his new class in Sept. 1.5 weeks to go!!

@Ahna65 I’m interested in the swimming comments, so how does it work, is she alone and is it Sen teaching? I’ve written it off for DS because I don’t think he would/ could follow any instructions. Does DD? Perhaps I’m giving up too soon. So if he wanted for eg to get out and run off he would. Or he does this really weird thing in the water of sort of hitting the water with the flat palm of his hand repeatedly? I can see him just doing that. Or repeated splashing.

@dimples76 sometimes I want to tell schools to stick their bloody reports up their arse. Do they realise that they are aiming their shitty and negetive comments at the most precious things in our lives? You may say it’s not personal but it makes me so cross. If imo they spent half as much time devising strategies to actually improve the situation rather than just setting out the ‘failures’ they wouldn’t do bad. Glad six was fun.

if you have that flex @Ahna65 use it. Do a 3 day week and have a day out with DH. Read a book. Stare into space. If that means the rest of the week is too pressurised it’s not really flex 🙂. Work is a HUGE distraction and area where I can be someone else and feel really valued and rewarded but I couldn’t imagine being FT either. I need that time not for DS but for me so if you can carve some time out for you and DH I’d try to do so. I don’t work on a Fri and more often than not DH will now flex around that, we will nip out for lunch etc. I do think that’s important esp if you don’t have sitters to give you that time on an eve.

Thanks all. All food for thought. @openupmyeagereyes totally with you on sometimes throwing money at things; sometimes a good reminder to actually do that (we are lucky to be able to, to some extent anyway). @carriebradshawwithlessshoes yes I like your idea about daytime type 'dates'. Think that is indeed a good and achievable thing to work into our agendas. I'm also overdue taking a day or so for myself (and I have a decent amount of holiday days to do that) but I guess still being in first year at new job things have just got busy and it hasn't felt like the right time. I will plan to do it soon!

On the swimming, carrie, yes DD can't follow any instructions at all. She's learning totally by feel. one on one yes with an instructor who does SEN or just NT kids who need one on one for whatever reason. The instructor tries to guide her to do certain 'strokes', or also using floats to jump off or swim under, etc. I think somehow DD does understand the 'task' in these cases but absolutely not by the spoken word. She just absolutely loves being in the water though. Does DS?

@dimples76 sorry to hear about the behaviours at school. I guess it's a significant transition and it sounds like DS has grasped that. I feel like you'll be in a better position when he's e.g. a month into the new school (that's usually my perspective on big changes, DC related or not). Sorry that DD's report wasn't great, I can imagine that wasn't great to read even though obviously it's so normal to have patchy reports, I think we all view things a bit more differently when one of our DCs has extra needs. In some ways we are extra strong and resilient but some spots are more sensitive - does that make sense?! Oh wow thesis SO soon, you must be in final proofreading stage? Hope you see light at end of tunnel and have planned celebration when you hand in, in a form which is possible.

@ElizabethBennetsBoots Oo lovely, well done DS, London can be intense for the best of us! keep meaning to organise a trip back but somehow it feels overwhelming now (even though I lived there for more than 10 years!)

Ahna I think you have to hope that this phase doesn’t last forever and do what you need to get through it. Time off mid-week sounds a great idea.

Elizabeth glad you enjoyed the trip to London. We really need to be brave and take ds I think.

dimples I agree with Ahna it’s a big transition for ds; a new school and no current classmates going. Hopefully by Christmas he’ll be well settled and you’ll be seeing the benefits at home.

carrie I know it’s a bit different but ds engages with his swimming teacher much better than I thought. More so than he used to in the pool with me. It might be worth giving it a try? Do they swim at his school?

@Ahna65 and @openupmyeagereyes he does love being in the water yes, but it seems to make him hyper excitable which in turn makes him very stimmy and self absorbed in a way that isn’t conducive to learning a new skill iyswim. So like I said, when I’m in the water with him often I just can’t stop him doing the water slapping thing which is bloody irritating as it splashes everyone in sight and knackers my contact lenses after a while. I get annoyed so i can fully see an instructor getting annoyed. I don’t feel it’s DS at his best. They do go from school. I’ve never really asked what they do. Given their performance generally I would guess not a lot. Certainly when we go swimming on hol next week I doubt after swimming with school for months he will be able to do very much.

@openupmyeagereyes he may perform better with an instructor but I have found as you know DS actually is at his best with me… so it would be a huge shock if he actually took better notice of anyone else!!!!

Thanks all. I am hoping that it is a case of short term pain for long term gain. He seems to have enjoyed his visits to his new school but obviously change is hard.

Re swimming DS ignores instructions in group lessons and often pretends (rather badly) to be swimming. I have booked both DC 1:1 lessons in the same pool at the same time with no one else in the pool Mon-Thurs the first week of the hols - really hoping it works. DS loves the water but can only swim about 5m. When I told him that I had booked lessons, he was confused and said that he could swim. I agreed but reminded him that if he wants to go in the deep end at his favourite pool that he needs to be able to show the lifeguards that he can swim across it. This seems to have motivated him...but whether he remembers this goal when he gets in the pool is unlikely!

Daytime dates seem like a great idea. I am taking Monday as time in lieu and have hired a private pool & sauna and then we're going out for lunch. Can't wait - as it us to celebrate thesis submission I guess that I had better make sure I do it.

dimples your plan for Monday sounds blissful. Well deserved after submitting your thesis.

carrie ds stims in the water too. He loves the feeling of being under the water and how things look underneath, the different light etc. He probably only concentrates for about half of his lesson but, as his teacher says, it’s not a bootcamp, it’s supposed to be enjoyable too. I wanted to get him a teacher because I had no idea how to move him on from where he was and she has been fantastic.

Is she a Sen teacher Open?

Yes she is.

Sounds blissful @dimples76 and well done on the thesis.
DS has one off 121 lessons with this great swim teacher usually in the holidays. Not cheap (£45 for 30 mins!!) But she is usually great with him (sometimes.pushes him too much as she sees his potential which can lead to him getting cross) but the whole swim school is for children with special needs of various types (hence the high price tag I guess). He's definitely made progress but still swallows a lot of water!
I have been planning some days out and fun things for summer today. As a compromise for DS as he wanted to stay up to watch the England game, I've put the laptop on in his room while we do books etc. He's shattered after a daytrip today but is adamant that he wants to watch the game 🤣

Great start to the weekend, thesis submitted! Can't quite believe that I got it in - small matter of the viva to look forward to in the Autumn

Congratulations dimples, what a great achievement 👏🏻👏🏻👏🏻

That’s amazing Dimples well done! X