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Primary school auties thread 9 - spring / summer 2022.

1000 replies

danni0509 · 12/03/2022 09:23

Thread 9.

Links to previous threads below.

For the parents / carers of children with additional needs, most of us have asd / adhd children in primary school, but anybody is welcome to join us to chat x

Thread 1
www.mumsnet.com/Talk/special_needs/3080753-DS-with-ASD-starting-school-Sept-2018-I-am-feeling-overwhelmed

Thread 2
www.mumsnet.com/Talk/special_needs/3451020-Reception-auties-2018-19-thread-2

Thread 3
www.mumsnet.com/Talk/special_needs/3628263-Auties-transition-to-Year-1-thread-3

Thread 4
www.mumsnet.com/Talk/special_needs/3748449-Primary-school-Auties-into-2020-thread-4

Thread 5
www.mumsnet.com/Talk/special_needs/3953023-Primary-school-auties-summer-and-beyond-thread-5?pg=1

Thread 6
www.mumsnet.com/Talk/special_needs/4166833-Primary-school-auties-spring-2021-and-beyond-thread-6?pg=1

Thread 7
www.mumsnet.com/Talk/special_needs/4303826-Primary-school-auties-summer-and-the-new-academic-year-thread-7

Thread 8
www.mumsnet.com/Talk/special_needs/4422100-Primary-school-auties-step-into-Christmas-and-the-New-Year-thread-8

OP posts:
danni0509 · 19/03/2022 09:25

Sorry for all the posts.

I read a few threads on here, old ones. 2010 one was from.

Similar issue to ds. Mainstream didn’t work, special school wasn’t working, they were moaning relentlessly, sending him home, illegally excluding with part time etc, he eventually got kicked out due to challenging behaviour, started another special school after a period of being home, same happened again and he ended out of school long term after 3 failed placements and she was wondering what her options were. Quite similar situations.

I feel this is the trajectory we are on. Unfortunately.

OP posts:
openupmyeagereyes · 19/03/2022 09:31

danni don’t read stuff like that, it won’t help your anxiety. It doesn’t mean you will have the same outcome. When is the meds review?

danni0509 · 19/03/2022 09:37

I just like to have an idea of how things have turned out for others in a similar boat.

I just read all the time, special schools are amazing, they change your child’s life, behaviour gets better once their needs are met, they do amazing things for young people etc etc and when it hasn’t been our experience, which it most definitely hasn’t, I wonder if anyone else has had the same. Not often I read on here special school isn’t working out. It’s usually mainstream but we’ve been there and done that too.

His medication review is about 6 weeks away, they changed it didn’t they. His teacher now has invited himself, but it’s a phonecall with me direct, and his teacher wanted it as a teams meeting but I heard nothing after that they were supposed to be contacting his teacher but no one said if that happened or not.

OP posts:
livpotter · 19/03/2022 09:48

Open that sucks! I hope you manage to get some rest in the day.

Danni I really hope that's not the case for your ds. It does seem like the school he's in has a bad attitude towards his behaviour and the meds. Maybe it's just a case of being the wrong setting. When is his next annual review?

SusanStoHelitsPoker · 19/03/2022 10:04

Oh @danni0509 honestly, huge hugs, how much stress adults cause is sometimes beyond me! Sounds like the PA didn't mean to complain but restraining him is not good, no wonder he doesn't like or trust her! Sounds like she's not had any or enough training on his needs and how to handle him. I don't think they get training often, like when pur driver tried yo be strict telling DS to stop singing loudly and was the totally perplexed when he did it more! My pda leaflet helped I think although it probably went down like a lead balloon!
Don't worry too much about outcomes as you don't even know what might happen, hopefully they will change the pa and things might settle. I would get the LA to remind school about gdpr etc though and stop them having those conversations with the taxi staff!! It is also your choice when you send him to school! Ffs.
@openupmyeagereyes gosh, so so early! DS was still up at 10.30 last night but at least he stayed in his room by himself for a bit for once (we were amazed! We could hear him pottering and singing to himself). Up early this morning too and looks shattered already. I have tried to get melatonin and found it is a very hard thing here as you have to go via their paediatrician, which DS doesn't have as we were pretty much told to go away and get on with things after his diagnosis, so I don't know how to start the process really and I'm very wary of giving him anything that might exacerbate his anxiety. He usually gets enough hours but falling to sleep is the issue!!
We are alternating this morning between an ongoing monopoly game and kindle gaming. I have got the homework folder out but no chance so far ha!

carriebradshawwithlessshoes · 19/03/2022 11:16

Agree with Susan and Open in all they say Danni. In particular don’t jump too far ahead. Perhaps this school isn’t right but that’s not to say all won’t be. There’s a fab one near here that takes specifically children who have bern excluded from a range of schools. They have a v good reputation.

Totally am with Susan on the Gdpr stuff. Not sure who would annoy me most, school or the taxi…

Agree re the melatonin Open. DS will lark in bed but does stay in bed. Susan I’m sure you could get it easily privately if you needed to…. I think Liv or Light went down this route? Liv I think?

We have an ill DS, croup. Sounds like he’s a 60 a day habit and panicking when he can’t breathe which makes it worse. I’m chesty too plus (don’t laugh this is excruciating) I’ve agonising teeth at the mo. It’s pure sensitivity not cavities (many many trips to dentist.) they are bringing tears to my eyes all day at the mo, they are horrendous. So painful.

SusanStoHelitsPoker · 19/03/2022 11:20

Ooh @carriebradshawwithlessshoes I hate tooth ache! DS had croup when he was smaller, it sounded awful! We ended up in a and e so he could get a steriod to relax his throat as it sounded like he couldn't breathe. He was only about 2 though, poor thing! Good luck with it all, Tey to rest too when you can.

danni0509 · 19/03/2022 12:11

I’m don’t mean to jump too far ahead, just like to be aware of what could happen if things don’t work out.

carrie you want biomin F off Amazon. So good for painful sensitive teeth. Hope ds is ok soon. Mine has lost his voice this morning. He’s full of cold.

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SusanStoHelitsPoker · 19/03/2022 12:27

It's so hard isn't it @danni0509. Sorry your DS is poorly too.

carriebradshawwithlessshoes · 19/03/2022 12:28

Thanks for that Danni I’ll get some x

carriebradshawwithlessshoes · 19/03/2022 20:53

A random shout to Liv is she’s about.

Whilst Danni googles her posts on certain stuff so do I. Not unexpectedly around ‘will he ever talk.’ Liv, I’ve just seen your old post about your family member who didn’t speak til 8. That’s just amazing! Can I ask more?? As in how and what triggered (if anything.) PM if it’s hijacking here. Not feeling v well today and been watching DS all day feeling v down that he just never will (things seem far worse when you are tired/ ill/ kids are ill don’t they?!).

Mum been to a gathering today and met apparently a lovely young man in his 40s who is completely non verbal (son of a friend.) I’ve heard chapter and verse about it, it’s not helped my frame of mind this eve.

danni0509 · 19/03/2022 21:27

When is ds 7 carrie ? He’s in year 2 isn’t he?

Move him to his specialist school, then re evaluate, see what they offer to help.

I can imagine at your ds current school he is the only or one of the only, non verbal child they have. (Assumption on my part, but non verbal children in mainstream are fairly rare. They are usually in specialist) so they won’t have much of an idea of what to do other than basic stuff, or stuff they are told to try by visiting agencies which is still usually basic.

You’ll find a lot of the children are non verbal or pre verbal in a specialist school so the teachers have tons more experience with it all. They used specific programmes for them. As I say, ds is in a year 3/4 class (mixed years) 3 of the children are completely non verbal. some are preverbal and ds and 2 others speak well.

Must be hard for you. Not knowing if he ever will speak or not.

I actually logged on to say I hope he’s ok tonight, ds had croup loads when he was younger and the nights were horrid. Usually spent in a&e getting steroids, I couldn’t drive then and my brother had to take us, regularly. Ds started calling his car uncles X’s taxi! It was like a Sunday night tradition, a&e with ds and my brother and a kfc on the way home! He was a complete germ bag when he was little.

OP posts:
carriebradshawwithlessshoes · 19/03/2022 21:39

7 in July. He’s in year 1 Danni I kept him back a year.

Everything you say is spot on. And yes it is hard … I read once that likelihood of speech depends on cognition snd social skills. He’s v able with both. I visited a small SS recently not the one where he has an offer but another to compare and in the whole school they had no non verbal kids! That shocked me. At the one where he has the offer I know they do. I don’t want to feel like he’s 2 heads which is how I feel about him in his current setting.

He def needs a different approach,

Thank you. I’m listening to him in bed now wheezing away…

carriebradshawwithlessshoes · 19/03/2022 21:42

I do just find him such a puzzle. Theres another child there with ‘severe learning disability’ whatever that means and she talks! If DS didn’t want to interact I’d understand that too but he does, so much. I get very fed up with it and really need help.

carriebradshawwithlessshoes · 19/03/2022 21:44

Even if the ss does nothing else for him if it can advance him on communication and any kind of speech it will be worth it’s weight in gold.

danni0509 · 19/03/2022 21:59

Ds asked me to download him a communication app like his friend had at school, I got it on the App Store, it’s free I’ll find the name for you!

He keeps barking orders at me on it, I want chocolate, I want squash, I want I want i want, I said manners ds! and he pressed please! 🤣

OP posts:
livpotter · 20/03/2022 06:41

I'm sorry you're both unwell Carrie. Yes I do have a family member who didn't speak till he was 8. When I spoke to him about it he told me it was very frustrating because he knew what he wanted to communicate but just could not get it out verbally. He does speak now, but he found other ways to communicate when he was younger, a lot of the time through drawing and painting.
From your posts it sounds like ds is very good at communicating with you through cards, which is amazing.
I agree with what danni says about ss. My ds's school has a huge variety of kids a lot of them are pre verbal and because the school puts communication first they are much better at supporting children at all levels and with different communication systems.

Susan we did go to a private GP to get melatonin for ds. Like you our paediatrics services boots you out the moment you get a diagnosis. The GP then wrote to our NHS GP who now prescribe it for us.

Open I hope ds slept for longer today!

openupmyeagereyes · 20/03/2022 07:24

Sorry for all the poorly people, I hope everyone is better soon.

Ds woke at 1:45 with a stuffy nose again but thankfully went back to sleep after 10-15 minutes and slept until 5:45. It took me a while to get back to sleep but overall a much better night, thankfully. He actually had a fairly long nap yesterday and I was even able to watch some of the Wales v Italy match.

Re. Googling. It’s good to be prepared and hopefully it can spur us into a new course of action to help bring about a new outcome.

carriebradshawwithlessshoes · 20/03/2022 08:51

I’d be interested to know the app Danni thank you !

danni0509 · 20/03/2022 15:50

It’s called grid player carrie

OP posts:
danni0509 · 20/03/2022 15:58

Ds is going to have to have a few days off school, I’m surprised I haven’t seen a lung fly out of his mouth.

Started coughing Friday night, which I’ve been trying to ignore in the hope it would go away, but his cough isn’t going to be gone by the morning, definitely not, it’s just got worse, and his school are the Covid police. 😣

He’s not poorly, just has a cold and coughing his head off..

I ordered a pcr home test, I’m going to attempt to swab his nose in his sleep when it gets delivered tomorrow or Tuesday. Only testing him so he can go back to school, wouldn’t bother if it was half term or whatever.

OP posts:
danni0509 · 20/03/2022 16:01

He wakes up when I cut his finger nails and toe nails…

He’s terrified of covid swabs, so I can only attempt it when he’s asleep.

They need to sod off with all of this.

2 years later, I’m bored to death!

OP posts:
LightTripper · 20/03/2022 22:09

Do you have the FlowFlex or the old type (NHS branded) @danni0509? I find the FlowFlex much more rounded and comfy - the NHS ones on the long sticks are quite stabby and unpleasant. Might be worth trying to get a box of the FlowFlex if you've got the other type (I could send you one if you PM me?)

I also can't believe but can believe all the taxi shenanigans. Surely it would be worth the council just trying him at least in the local special school? At least then he wouldn't have this massive commute stressing him out at each end of the day.

@carriebradshawwithlessshoes could DS have apraxia of speech? Faye at Nurturing Neurodiversity has done some videos on it as her son Dexter has it (he does verbalise a little but mainly communicates using his tablet/talker). Might be worth a look to see if it might fit/be worth pursuing?

DD is doing her Show and Tell at school on autism this week. It feels like she's coming out or something I'm slightly scared (especially as some of the things she tells me about her autism are a bit off the wall Grin). But school seemed to think it was a good idea and she was super keen so we seem to be doing it. I've got a horrible feeling she's going to maybe not have quite the reaction she wants (i.e. everybody else being as fascinated by her neurology as she is ... ask me how I know this is generally not the case Grin).

Anyway, I guess I feel good that she wants to share it ... just nervous about what the fall out might be!

dimples76 · 20/03/2022 22:46

Light wow, I hope that it goes well for your DD. I understand your anxiety.

danni0509 · 20/03/2022 22:55

Light x thank you. I have flow flex, little sticks, much easier.

I’d actually tested ds in his sleep at 8pm, just a quick in out before he groaned and tried to sit up and it was positive within 2 seconds…..fuck

OP posts:
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