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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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openupmyeagereyes · 06/02/2024 14:52

I think teaching ‘getting involved’ is done 1:1 with an adult, 1:1 with another child, then small group isn’t it? I guess even then some dc will find it hard, especially without a form of communication.

Does ds play with dd? Did he as they were growing up?

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dimples76 · 06/02/2024 15:02

Yes, I agree Open. With DS his 1:1 has been playing board games with him then introduced 1 other child, and then another. I would say that DS is an extrovert though so he seeks out being with others (what comes next and whether they want to talk/play with him is another matter).

Carrie sounds good that the EdPsych is coming out to see DS at home.

dimples76 · 06/02/2024 15:04

On Saturday we went to a relaxed performance and workshop with the Royal Philharmonic Orchestra. It was fab, DS loved it. If they have one of these events near you I would definitely recommend.

openupmyeagereyes · 06/02/2024 15:22

dimples that sounds amazing.

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carriebradshawwithlessshoes · 06/02/2024 15:38

Sounds fab dimples, I would like that too.

DS has always liked people. It’s just doing joint things with them that’s the issue. To answer your qu Open he will for eg seek out DD and want to sit with her. If she instigates a rough and tumble game or a tug of war game for eg he will do that happily. But not a board game/ sedentary type of activity. But then he’s not interested in that so I suppose why would he want to do it with another person.

openupmyeagereyes · 06/02/2024 15:55

So then it sounds like school need to meet ds where he is (i know i say that a lot) and provide him with opportunities for successful social interactions on his terms. So, ds’ school has soft play stuff. Would he join in with a small
group playing or building a tower or den? Or does he join in with active games with a couple of other kids in the playground? They can expand from there.

The fact that he’s not ready yet to join in in the classroom is their problem at the moment, not his. It doesn’t mean it won’t come. And if he’s doing English and maths that’s also good.

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openupmyeagereyes · 06/02/2024 17:18

Sorry carrie, reading back I may have ‘answered’ a question you didn’t even ask…

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carriebradshawwithlessshoes · 06/02/2024 18:33

Ha, no I’m grateful for any thoughts, asked for or not! All v helpful. I’m glad the EP wasn’t a total car crash I guess….

openupmyeagereyes · 06/02/2024 18:52

I’m glad you finally heard back from them.

Not long until the half term break now, I’m looking forward to it. Plus Shrove Tuesday and Valentine’s Day too.

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carriebradshawwithlessshoes · 07/02/2024 11:55

Urgh. I said to the neurologists PA that when DSs results were back I assumed if they were clear she could just text me. If not could we have a call. I have just had a message from the PA saying the results are back which Dr X ‘would like to discuss’ on Friday via a zoom. This doesn’t look good does it??

carriebradshawwithlessshoes · 07/02/2024 11:56

DH getting v cross and saying I’m over dramatising.

openupmyeagereyes · 07/02/2024 12:28

Maybe they have a policy of discussing in person regardless. I hope all is well xx

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carriebradshawwithlessshoes · 07/02/2024 12:37

i suspect it’s not ok, nothing is with DS! Thanks though and I’ll let you know of course x

openupmyeagereyes · 07/02/2024 12:39

If it isn’t then best you know and can medicate xx

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carriebradshawwithlessshoes · 07/02/2024 13:25

Yes, that’s right, I suppose we just don’t want our kids to have any more issues do we. Epilepsy is something that many grow out of and I hoped as it had been so well controlled for years on such minimal meds that it might be something that we had put behind us. The dr actually said what he had been taking for the last year wasn’t a therapeutic dose so (a) I think I was lulled into a false sense of security that things were ok, esp given that nothing was evident in the day and (b) I’m now worried that if that low dose wasn’t actually working, has he been having sub clinical seizures that have been harmful to his development.

Anyway no point speculating I suppose til the appointment..

Ahna65 · 08/02/2024 07:28

I’d interpret that in the same way as you @carriebradshawwithlessshoes , although my DH would say exactly the same as yours and tbh they are kind of right I guess. Luckily not long to wait. Thinking of you.

carriebradshawwithlessshoes · 08/02/2024 08:33

If it does show something I will think how useless are the nhs! The nhs consultant has never said we need to do this and when I spoke with DSs epilepsy nurse on Tuesday just to update her she said well, if there’s no seizures being seen this is all rather OTT. She’s nice but makes me feel I’m paranoid. So if it does show something then under the nhs he could have been continuing to have night seizures for ever and a day which I’m sure would be great for his development. It’s like they just write kids like DS off. Anyway I won’t jump the gun.

Ahna, does DD wet herself on a night? I know this is one sign of a night seizure. Otherwise I’ve slept with DS many a time and unless I’m being completely stupid haven’t noticed anything at all. Even at the weekend. I was awake most of it. He yawned and coughed once in the night but that was it. If there is something I find it scary it’s so asymptomatic for him.

Ahna65 · 08/02/2024 10:35

That seems like a lazy comment from the nurse given that it is known that not all seizures are convulsive / clearly visible. I understand your frustration.

she does wet herself but she’s very much still in nappies so hard to separate from that really.

who knows - it might indeed just be a standard call to say there’s nothing / close the loop. Hope you’re not worrying too much today.

carriebradshawwithlessshoes · 08/02/2024 10:55

I’m supposed to be having dinner with 2 friends but don’t feel like it really much. DH says this is ridiculous. I suppose it’s not like he’s not been on meds before. I don’t believe this really but I have a book with a chapter on seizures and it says if the seizures are ongoing and affecting the ‘speech’ part of the brain, by getting that under control with the right med it’s very common for a child then to talk. How great would that be, i would take meds any day for that!

DH is reminding me of my own situ which I’ll tell you about as it was quite amusing but goes to show how dangerous dr Google/ assumptions are. A few years ago I had a heart issue, I’ve mentioned it on here. Fortunately I had a great, very Yorkshire, down to earth cardiologist but I had some tests, then a letter from the hospital followed. It was quite complex but I took to Google as an intelligent person, omg I read I was dying. It was hereditary, my kids would have it, shortened life expectancy and so on. DH got home from work and I was in floods of tears etc. Made urgent appt with cardiologist to discuss, I went in in a real state, practically had my will written out. He said right, ok. That’s a really good summary of this cardiac condition, almost textbook like! Really well digested. However it’s not what you have got. You have got this. Completely other cardiac issue!

DH gets very cross with me ‘getting ahead of myself.’

openupmyeagereyes · 08/02/2024 11:40

carrie I would go. If he gets the all clear you’ll wish you had. If he doesn’t then you definitely won’t feel like it tomorrow.

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carriebradshawwithlessshoes · 08/02/2024 12:10

And it’s a work friends thing so can only go tonight anyway

Ahna65 · 08/02/2024 12:13

Oh dear @carriebradshawwithlessshoes that is funny and indeed a cautionary tale although I do think doctor google can be helpful if used wisely and obv in conjunction with a doctor!

id go to the dinner if good friends, will hopefully be distracting.

carriebradshawwithlessshoes · 08/02/2024 12:22

Tho dinner looks in jeopardy as heavy snow falling…

openupmyeagereyes · 08/02/2024 12:56

Oh nice. Hope you don’t get stuck anywhere. Rain all day here.

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dimples76 · 08/02/2024 13:21

Carrie it sounds like with the weather and your worries about tomorrow that the dinner might be too much right now. Hope that you get clear answers tomorrow.

We just have v wet sleet here

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