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

@Ahna65 Travelling on your own with two kids sounds very stressful indeed! It is weird to think about what my life might be like if I had stayed in NZ.

Just back from the orthodontist. DD did so well. She did everything she was asked, and stayed calm the whole time. I was so proud (except when she accidentally spat her mouthwash all over the orthodontist!) She had to make moulds with a horrible-tasting paste, so it could have been awful. I think having her soft toy Pokémon with her made a big difference because she found it a lot more difficult last time we were in.

We go back in two weeks to get the actual "appliance". I find it so weird that they call them that!

Have fun tonight carrie. I saw a clip of them playing ‘somewhere only we know’ live this morning. It was great.

Thanks open! Booked a bit of tapas beforehand so just going now x

Have a great time carrie!

Concert great, even managed a Cosmopolitan first in true Carrie Bradshaw style 🤣. Back to reality now. Both kids up and lively when we got in at midnight. Makes me think without melatonin DS would just never go to bed!

That sounds fabulous Carrie.

How is everyone?

I had a really good session with the therapeutic social worker yesterday. She had asked me in advance to give her a few examples of recent struggles with DS and then chatted through strategies. I felt really heard and supported and I will be interested to see what effect, if any this has.

Not so great this morning I went to see DS's year group's worship. He looked so lost, poor mite. Fortunately it will be his last one at this school.

@dimples76 yes, hopefully a much more positive chapter for DS with the new school! I’m glad you found the session useful!

all good/ uneventful here. DS is so much better in nice weather when he can be outside. Nothing inside interests him. In our garden we have a trampoline and swing and slide and tbh he would stay there half the day just going from one to the other. Add a padding pool/ water sprinklers and it’s prob the day during which I could, technically, watch him with a coffee/ glass of wine in the garden and relax (not a word I use often!). I then have tho pangs of guilt that I’m not interacting with him enough or trying to. Can’t win!

we are off to the south coast in half term so hoping the weather holds for some surfing and general chill out time. That really is DS idea of heaven, so therefore mine too.

Hi everyone, sorry to have been a bit quiet recently! All pottering along OK. DS volunteered to be the lead in his play and its on Friday and he's started worrying about it! They are also signing a song at the end so at least I've learnt some makaton in the process!
What lovely weather! We've been mostly in the garden too. The cat is loving it as well although DS has insisted we do no mow May so the grass is so long and the cat keeps hunting stuff in it!
I am also happy as I managed to find some actual boyfriend cut jeans circa 1998 that fit me on sale, so that's the summer wardrobe sorted 😀 👌 😄 We have one more week after this one until half term here and we are then going camping woohoo!

Hope you have a lovely time @carriebradshawwithlessshoes

Hope half term is lovely @carriebradshawwithlessshoes ! Yes, weather and garden time is great. Although DD constantly wants one of me or DH to be on the trampoline with her - like totally constant, and it triggers a meltdown if refused. It’s sweet that she seeks the interaction but it’s becoming a bit intense!

im feeling a bit under water this week. Combination of things - some bad sleep, bad meltdowns, hospital visit with DD having an infected wound and a fever (luckily the 2 weren’t related), busy at work. And have quite a lot in the agenda for weekends / trips for the coming couple of months. A bit too much really. Have a wedding abroad in a couple weeks which I’m dreading. Kid free wedding but travelling with DCs and relying on nannies out there via recommendation. Makes me nervous tho and im half expecting not to attend the wedding if I don’t get a good vibe

anyway everything just feels a bit relentless this week! Although DD did sleep well last night after a terrible Mon night (although she slept with a poo in nappy so now has a bad rash and it goes on…)

@Ahna65 are you both going to the wedding? That sounds a tricky one. If it’s primarily ‘your’ contact could DH have the DC? Or your mum or MIL (appreciate you may have to pay for their trip over there?). I remember Open going to a friends wedding on her own a while back which she said worked out well.

Do your DDs (either!) make noise on the trampoline? This is my one bug bear, DS is very happy squealy on it and it makes me very conscious about the people around us. In fact he’s been banned from it for the last 2 days for that reason. We have elderly neighbours and in nice weather I hear them in their gardens all the time talking in hushed tones with (I imagine) a cup of tea and bloody newspaper. I know I shouldn’t care but I do.

@carriebradshawwithlessshoes we had a lot of debate on the planning for this wedding! It's primarily DH contact although he is best man , speech etc and I guess particularly wanted me to be there (normally we would do weddings separately). MIL is in fact also going to the wedding which was unhelpful from a childcare perspective ;)

I did ask if my mum would come here to cover for 2 nights, or yes come along, but she was not up for it (to be fair she did off to have the kids at hers in UK, but the idea of flying them there to then fly to Spain etc etc and again, just seemed like more hassle than it was worth). The wedding is an evening wedding which sort of helps although DD will still be awake for much of the nanny's stint. I expect MIL will be helpful the day after if we've had a short night / hangovers...

Yeah I hear you on the trampoline. Apart from the generic trampoline springing, the noise isn't bad (or maybe I'm immune to it now). DD tends to spring in silence! But at the moment DD is really enjoying spinning the wheels on a kid's tractor type thing - and for some reason it just makes loads of noise. Have tried steering her to other spinners but maybe she actually likes the noise / increased resistance of this one? And yes I am feeling conscious too when you can hear people sitting out at the same time. More so though if she's having a meltdown, as even when we go inside and shut the door, I know that the noise carries to the gardens of our 2 nearest neighbours... Sometimes I'd like to live a bit more remotely.

Spring in silence 🤣🤣. Any tips? Can I gag him? There’s plenty of mowing and hedge cutting going on here so I wouldn’t worry about the wheels. Sometimes I wonder if I’m too conscious, tbf every time I go out there’s a child having a meltdown, no idea obv if they are NT or otherwise but it helps to think we are in good company! Would also like to live more remotely tho sounds crazy to say that is because of DS. We are having some major house works done so will have to move out and rent after Xmas .. maybe this is my chance to be out in the sticks!

Ps congratulations on your pelvic floor muscles if you can navigate the trampoline! I have to sit down on it then feel quite ‘sea sick’ after a while! 🤣

Hoping the quietness on the board means everyone is well!!! Happy half term to all, @ElizabethBennetsBoots have a fab holiday, @Ahna65 hope the wedding goes ok!

I’m reading if not posting, things have been busy. Looking forward to the break next week.

carrie did anything ever come of the EP assessment? Was there any helpful input for school? How’s school going?

Ahna ditto on the wedding. Hope sleep ok.

dimples how is ds doing with his weekly group? Are you having the sessions for yourself weekly?

Hope everyone else is ok.

Wondering what those of you with older ND dc are doing to help develop independence?

@openupmyeagereyes useless. 5 months later drafted a summary of recommendations which is no diff to what they are doing. As I expected really!

carrie what a disappointing waste of time!

School still rather up and down here, good days and unsettled ones. We should have AR in June.

Ours was last week @openupmyeagereyes . Not sure really what they achieve… I was quite strident with school but they don’t like being told! Just ridiculous really. I’m glad he’s out for a week! It’s absolute glorified childcare imo for DS at least.

Has he made any progress at school this year? There must be some positives?

I’ve a separate thread on this! To my eye… no, none!

I had a look at your thread, I hadn’t seen it.

Did anything useful come out of the AR, any alternative approach agreed? Can you get the person who gave you advice to do a report?

It’s totally chicken and egg. I’ve told the SALT and OT to come up with a plan b. They just look perplexed like they are doing all they can. So they are reverting next half term once they have thought about it. 😬🙄🙄. I’m not holding my breath really. The other poster on the thread recommends independent reports which may be the way forward but it’s such a ballsache! So I don’t know open, I really don’t!

Sorry I prob need to read back on my thread to identify who I mentioned re person who gave me advice? We have had advice but they need to assess DS thoroughly first which is a summer job at earliest. School v v reluctant to want to incorporate external people at any level, it’s their way or the highway even though they aren’t delivering! Really as I said on my other thread they just attribute everything to DS. I really resonate (now) with a lot of Dannis frustrations about school, my DS presents v differently but just in terms of them really doing very little to move him forward and blame his presentation for that.

what would your ideal provisions be in the EHCP for next year?

That sounds frustrating Carrie.

How much time is your DS spending in school now Open?

DS has decided that he really likes the emotions group at CAMHS so that's great. I have also got him a place at a group run by a local charity for SEND children every other Saturday. So quite hopeful about that.

Haven't heard back from CAMHS or new school though. Planning to tell DS about it during the week off.

Good news at work today though. My application for a research sabbatical has been successful so from September- January when DS is settling into his new school I will be working at home. This should alleviate some of the pressure.

Unfortunately DS's behaviour is very challenging at the moment. However, today I got to see both DC perform in a song and dance concert. They were fabulous!

Open re independence- v slow progress here. Eg I tell DS to check bath temp before he gets in. But am still dressing him, wiping his bum, washing his hair etc. We have practised DS ordering things in a cafe/ paying in a shop. He is quite good at that- but he is much more motivated!