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Thread 13: autism and any other additional needs A/W ‘23

1000 replies

openupmyeagereyes · 19/10/2023 06:21

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

Primary School Auties 10: Summer and beyond 2022 | Mumsnet

Thread 10. Ooops, sorry, filled up the last thread without noticing - here we are at THREAD 10!! (How did that happen?) This is a thread for the par...

https://www.mumsnet.com/talk/special_needs/4592899-primary-school-auties-10-summer-and-beyond-2022?page=1

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7
carriebradshawwithlessshoes · 30/01/2024 14:09

They do say when he’s this upset they can’t communicate with him at all.

carriebradshawwithlessshoes · 30/01/2024 14:12

Thank you @ElizabethBennetsBoots and @dimples76 . DS has a long history of ear issues/ hearing issues yes. Partial deafness for a long period, grommets x 2, adenoids out and 3 years of almost constant glue ear!

openupmyeagereyes · 31/01/2024 09:24

dimples glad things are going well currently.

Elizabeth hope you’re all on the mend.

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dimples76 · 02/02/2024 13:19

What a day I have had! This morning phone I received a call from DS's current school SENCo. She had heard from the SENCO at our closest secondary (v high academic comp) about DS going there in September. This is the school that I had told case officer at EHCP review that I would never, ever send DS to. Then when I was crying down the phone to my sister the phone rang again. It was the Council - DS has a place at my first choice special school to start in September. I can't quite believe it! So then the tears of relief/happiness started!

ElizabethBennetsBoots · 02/02/2024 13:50

Hooray @dimples76 !! I'm so.pleased for you all!
I am still.ill! Boo!!

openupmyeagereyes · 02/02/2024 14:34

dimples that’s fantastic! So happy for you and ds. 🍾

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openupmyeagereyes · 03/02/2024 09:26

dimples has it sunk in yet? When are you going to explain to ds or does he already know?

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dimples76 · 03/02/2024 20:07

It still feels a bit unreal Open! I have not told DS yet, think that I will wait til the Summer term. The only negative is that he is going from year 5 to 7 so that will be a bit confusing for him (and the thought of him being at secondary school is alarming for me!)

Ahna65 · 04/02/2024 07:04

Sorry been so busy but was so happy to read the update @dimples76 , great news, really really happy for you

246810k · 04/02/2024 08:38

Hi all. Ds aged 5 asd and very limited speech. Last few weeks which is getting worse he's just moaning/groaning?! Loudly sometimes crying out of no where. Then moments later completely fine happy. He's not unwell or hungry or able to tell me but the groaning moaning noises are driving us mad?! Anyone had similar? Thanks

carriebradshawwithlessshoes · 04/02/2024 10:32

Congrats Dimples that’s wonderful news!

Sorry for delay been in hospital all weekend with DS (planned) having 24 hour eeg. Ahna not sure if you have had DDs yet but happy to share info if it helps. I saw you had started a thread on it a little while ago. I couldn’t help then but prob could now.

carriebradshawwithlessshoes · 04/02/2024 10:36

Do you think of things after posting that you have firg

carriebradshawwithlessshoes · 04/02/2024 10:37

Forgotten to ask (oops!).

Ahna how’s the knee? Back to running?

Open are you still having the family sessions with DH? What do you cover, is it useful?

openupmyeagereyes · 04/02/2024 11:13

carrie what did the eeg show?
We haven’t had another session yet, it’s tricky finding a suitable time.

Elizabeth hope you’re feeling better.

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carriebradshawwithlessshoes · 04/02/2024 12:36

Results in 7 to 10 days Open. There’s nothing seizure obvious in the day but ahnas comment about some kids having night seizures is one echoed by a lot of drs so I wanted to close the door on it either way. Im a bit worried as I sneaked a look on the screen which did seem to show episodes of peaking but DH is telling me to shut up as I’m not a dr.

carriebradshawwithlessshoes · 04/02/2024 14:07

That all said if he is having unseen episodes that are or may be stunting his development he needs to be on medication. We will see.

Ahna65 · 04/02/2024 14:39

we don’t have an appt yet @carriebradshawwithlessshoes but have a meeting with the doctor overseeing it - meetings about meetings but I reckon we will get a slot in the next month or so. How did DS find it? Does he have sensory issues with hats or anything? Did he sleep normally?

good you don’t have to wait too long for results, interested what they will find.

my knee is getting there thanks, so back to some running, keeping me sane! Sleep has been ok for a bit although the weekend worse than the prior week.

Have tried to death w the spinner but it just doesn’t lend itself to joint attention. The best way to get her interaction is very physical, sweet but exhausting!! Trying to make a game with the egg chair which sometimes works.

dimples76 · 04/02/2024 19:00

Hope that you're better soon ElizabethBennett'sBoots

Carrie that eeg must have been exhausting for you. Hope that the results are clear

Ahna well done on getting running again. I thought my toe was much better but overdid it (only walking) and I am back to hobbling again

DS and I both started coughing today ...hope it's not the start of another bug. His 1:1 was off school last week with Covid.....

This afternoon DS tripped over a stool, managed to save himself from falling then hit me on the back before immediately saying sorry and hugging me. The last part is a new development- so progress of sorts!

carriebradshawwithlessshoes · 04/02/2024 22:12

@Ahna65 it was a lot better than I had feared so don’t worry. I really was expecting worse. DS is more sensory seeking than avoidance and under sensitive to things (would sit in wet clothes etc) so getting the wires and hat on was ok, I sat with him on my knee whilst DH held the iPad and I held his hands down. I had a good chat with the dr tho and he said he worked with many severely autistic patients and he had never failed to get the wires and hat on even with major resistance. The hat itself was glued on so once on virtually impossible to pull off. DS was really good and seemed to forget it was on.

Whilst he can be v hyper he can be very placid too and he was actually very withdrawn/ quiet and happy to watch TV/ iPad for most of the time which is very different to at home!! Ours was with video recording, the most tricky bit was the wires were attached to this box which had to be carried if he moved, so trips to the toilet were fun!

my gut feeling is it will be abnormal, tbh I felt more relaxed when he was on meds. I know people say it’s pointless taking meds if not needed but after watching your child have a fit, then having the reassurance of meds, then that being withdrawn I feel is really nerve racking. I feel he’s a loose cannon. Anyway yes I’ll report back and Ahna pm me if more questions.

dimples the whole logistics were exhausting, DH said no point paying loads as not a fun trip so stayed in a budget hotel out of London which was horrendous! Like a red light zone 😆. Trains were on strike and then the tube was unable to stop at the hotel station so logistically awful! Of course for me not great either, very little sleep with bleeps and machines buzzing, another child crying constantly in the next room and so on. But the actual thing Ahna wasn’t terrible so don’t worry.

the dr said he often gets lots of resistance but the value of the data far outweighs that so they find a way. It’s their job to!

carriebradshawwithlessshoes · 04/02/2024 22:16

And yes he slept normally. The hospital had melatonin and tbh I took ours too so dosed him up more than I usually do as I knew sleep was the whole point of it. He dozed off about 11 and slept til 7.30 so that was quite a long recording.

Ahna65 · 05/02/2024 07:50

Thanks @carriebradshawwithlessshoes and reassuring to hear that they manage with more resisting kids too. Indeed the value of the data is important so although it may be tough to see if she resists, have to keep that in mind. Is the doctor who did it for you also involved in prescribing medication if things do show up? Or fully separate?

@dimples76 seems like there’s been a few instances lately of DS being really very sweet - to you or his sister - long may that continue!! Rubbish about the toe though. Toes can be soo painful!!

carriebradshawwithlessshoes · 05/02/2024 08:51

@Ahna65 thats a really good question and a difficult point. The private London neurologist can make a recommendation of meds and can prescribe however really it needs to be on his nhs records (for cost and just general smoothness and ideally prescribed through the nhs). The nhs and private are 2 completely separate beasts tho and the nhs consultant (who I don’t like and who is pretty useless) I think is aggrieved that we have taken a private view above her head. So if they both agree with course of action it’s ok but the private dr is often a bit off the wall and out of the box and may well suggest something that the nhs disagrees with (whether out of principle, cost or whatever.) I’ve a good link with an nhs epilepsy nurse who is lovely so I’m going to ask her about that today. I will of course keep you posted.

openupmyeagereyes · 05/02/2024 09:52

carrie the whole trip sounds quite stressful, but it should give you peace of mind either way so worth doing.

dimples sorry toe is still sore. I agree with Ahna, sounds like more positive interactions from ds.

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carriebradshawwithlessshoes · 06/02/2024 14:20

EP just called me with her observations of DS before Xmas. She says she is trying to ‘unpick’ him and wants to see him at home with me which is fine so she’s coming next week. Apparently in school she saw him doing some complex maths (mostly correctly) on a one to one basis. He was interested and animated during reading/ English. During group activities he wouldn’t even acknowledge what was going on and just got up to do his own thing.

That got me thinking. It’s really hard to teach ‘getting involved’ isn’t it. Some of you talk about joint stuff but DS doesn’t really do it. Do you remember the pre school classes you could take them to where all the kids sat in a circle and joined in with the leader… ‘if you are happy and you know it clap your hands! Stomp your feet!’ All that stuff. And all the kids would be delightedly clapping and stomping apart from DS who would be staring out of the window or around the room like nothing was going on. Sounds like he’s still like that at school.

Tbf DD didn’t really participate much either, she would have been saying ‘I’ve had enough mummy I’m ready for an ice cream, shall we go and get one?’

Just my kids?! 🤣

openupmyeagereyes · 06/02/2024 14:50

Well difficulties with social interactions is one of the tenets of ASD isn’t it. I think that can manifest in a range of ways from not interacting at all, because it’s scary, unpredictable, whatever, to the other extreme of wanting to interact on your terms only. i.e. you make the decisions or choices, you have to answer, win, etc. and it can become problematic.

Mine has always shown interest when he wanted to and he plays with us and peers on that basis. When he was a baby and toddler he didn’t take part in those sorts of things like the others did. He’d be exploring the room or trying to find the way out. At tumble tots he’d run around the empty bit of hall, that sort of thing.

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