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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:
Elizabeth996 · 21/04/2022 20:41

Today I had my sons first at home assessment for his suspected autism. All went well I think but there was one point where she asked me if he has an accent, this took me by surprise because all his life people have said he sounds like he has an accent (mixture of almost a Russian sounding , American and of course his regular English accent. I got distracted and didn’t get a chance to ask the significance of this? Does anyone have any clue? I’ve tried to google a bit but can’t find much information. I’m not sure if this could be related to autism or another condition perhaps?

danni0509 · 21/04/2022 21:01

Does he watch YouTube? Or any specific programme with a different accent? Anyone from nursery or school with a different accent, staff or children?

ds has an American twang at times, he also uses American words, diaper (as above) garbage truck, trash, candy etc etc. It’s YouTube!

My sister in law is a primary school teacher (year 2) and she said it’s really common even with ordinary kids, a lot in her class do it.

OP posts:
openupmyeagereyes · 21/04/2022 21:39

I was going to say the same thing. How old is he?

openupmyeagereyes · 22/04/2022 15:15

Ds went into school for an hour this morning to do PE. This afternoon I took him to soft play; it's so nice being able to go when the other older kids are at school. I imagine that we're going to have free afternoons for some time yet.

I hope everyone has had a good day.

carriebradshawwithlessshoes · 23/04/2022 08:32

It is nice Open I agree with that. I’m so cheesed off with school and they are doing nothing for DS he may be mysteriously ill on quite a few of my days off between now and end of term. We hv also just booked a cottage for the last 2 weeks of term time…we will both have to do a bit of work but will be nice to do that a stones throw from a beach (before the schools break up) than at home!

openupmyeagereyes · 23/04/2022 09:17

Oooh carrie, living dangerously 😉

dimples76 · 23/04/2022 09:33

DS has often incorporated other people's accents in his speech. My nephew (also autistic) sounds a lot more posh than the rest of the family - we live in the NE but his speech is more RP.

Carrie sounds like a good plan.

Open I am glad that you have been able to make the most of things.

I drove back from holiday yesterday. Apart from a brief respite for lunch and 30 mins when DD was asleep my 2 were fighting for 6 hours. Hoping that today is a little more peaceful..

carriebradshawwithlessshoes · 23/04/2022 12:29

Yes Open I’m living life on the edge 😁😁😁

openupmyeagereyes · 23/04/2022 15:07

dimples you need a holiday to get over your holiday.

LightTripper · 23/04/2022 15:25

I think the accent thing can be an autistic trait? Does he watch Vlad and Niki on YouTube? DS loves them and they have a Russian/US accent.

livpotter · 23/04/2022 19:22

My ds has a full on American accent from watching YouTube videos

openupmyeagereyes · 24/04/2022 11:31

Have any of your dc had a covid jab yet?

livpotter · 24/04/2022 13:52

We've been offered it but haven't gone yet as I think ds would struggle too much going to a vaccination centre. When I phoned the helpline to see if there were any other options she suggested we wait a bit and try and have it done on an inset day when it will be quieter.
I wish they would offer it in school, like they did with the 12-18s or at our local GP.

carriebradshawwithlessshoes · 24/04/2022 20:28

Re the jab, what are your views on it generally for the DC? Sorry if this is a daft statement but I’m not sure why I would vaccinate them when both have had it (DD twice) and had no symptoms/ been fine! I’m all for vaccination for things that could make them seriously ill/ be fatal etc but both been totally asymptomatic …so no Open neither have had it (been offered it for both tho…). I’m not aware from mum chat that anyone has had it done ….

openupmyeagereyes · 25/04/2022 08:29

liv they did it at our school for the older kids. Can you ask about it?

carrie if they’ve had it and were fine I wouldn’t worry about it I don’t think.

danni0509 · 25/04/2022 13:47

I had ds appointment this morning.

He’s been referred to the learning disabilities team to be assigned a learning disability nurse, they usually do it at 7, but he can’t see why he hasn’t already been referred so he’s done that. That service will help with any issues we have going forwards regarding ds and I can ring them whenever I need any help with anything.

He’s increased his methylphenidate 15mg (was 10) morning, 10mg lunch time (was 5) , 5mg teatime. (Same dose)

Hes referred him to the dietician as ds is barely touching food, ive told them this before, but his teacher was going on about it at the appointment about ds not eating at all and him looking really slim, So they want ds to see a dietician for some input and for him to be prescribed fortsip shakes.

They’ve referred him for some therapy (anger management, emotional regulation etc) with a psychotherapist. They have to do this before they can do the next bit which I’ll write about in a minute.

They want him to have fluoxetine anti anxiety medication (comes in liquid form! Which is so helpful!) but the nice guidelines states he must have 8 sessions of pyscotherapy first, the adhd nurse has cut that to 4 sessions to get him on his anxiety medication sooner. Because ds school have already done lots of work around this, he’ll get the 8, but for the medication side of it he’s said 4 and then will give him the anxiety stuff.

Hes also sending the remote psychiatrist an email to see if anything else can be done now whilst ds waits for the appointments, anything with regards to some other anxiety medication which doesn’t need to be started after a box ticking exercise.

OP posts:
danni0509 · 25/04/2022 13:55

I also think that I’m going to phone social services for a disability social worker, for respite and stuff, but not for my benefit, I think for ds, I’m worrying or thinking more should I say, about the future and him needing to get used to being with other people in case he has to go to a residential school / for when he has to access adult services and go out with workers etc.

Just think at some point that needs to be done as he’s going to need one when he’s an adult anyway.

Sorry to be ignorant, the lady on the last thread we spoke to, the disability social worker, can anyone tag her, I can’t think of her name!

I wondered how the process works, and what it is that you do for families, I just get a bit worried with the stigma of social services, and him having to go on a child in need plan etc, thanks x

OP posts:
danni0509 · 25/04/2022 14:25

Ds teacher was at the meeting today; he said to CAMHS that ds was the top of the class for all his work, reading writing maths, or would be if he could access any of it. He said his potential is unreal for the type of school he is in but his adhd and anxiety are the main barriers that are preventing it, he’s barely accessing work as he’s in too much of a heightened state for the full school day.

(Sounds daft but ds the top of anything, I’ve never heard those words spoke in the same sentence! he’s always been bottom of everything! So that was good to hear! Obviously not the ‘if he could access it’ bit) I know he’s smart, I’ve always known he’s smart, but for once to hear your child is top and not bottom, is nice.

He said his school have endless knowledge but ds adhd is the severest that any of the staff have worked with, not just with his hyperactivity or impulsive behaviour but his brain and how it works, his teacher said his brain is constantly in overdrive and he can’t take anything in, it’s gone as quick as he’s heard it.

He named all sorts they’ve done with him over the past 12 months, he works regularly with the pastoral team on specialist programmes and none of it has had any effect on ds whatsoever. He said they aren’t sure what else to do, and moving forwards they are wondering what more they can offer.

😬

OP posts:
danni0509 · 25/04/2022 15:14

Fuming with ds school. They’ve done a trip today to the leisure centre, I got an email about it, I paid £5 donation 3 weeks ago, signed the consent form they specifically sent me with Ds name on to ParentMail, hadn’t heard otherwise, so told ds this morning, sent him with his swim kit.

They took the rest of his class and left him at school!!!!!

1-1 this morning said to the taxi when she passed his swim bag over, can you remind mum it’s swimming Tuesday / Thursday! Not Mondays! (Don’t patronise me!) Taxi said no, it’s today, she’s signed consent form for him to go on the trip and paid the fee. The 1-1 said, oh it’s not for ds it’s for his class, ds does his lessons in the hydro pool. He’s not able to access community trips yet.

are you kidding me? Exclusion at its finest. Livid.

OP posts:
openupmyeagereyes · 25/04/2022 16:22

danni it's certainly crap for them to have sent home the form and taken your money when they didn't intend on taking your son along. They should have spoken to you about the trip and their concerns first.

Regarding your other posts, it's great that ds will get additional support going forward. Hopefully the anti-anxiety medication will help him and he can settle down at school. Does the information not being retained resonate with you? From what you post it sounds like he retains an awful lot - knows his times tables etc. so it could just be the school setting rather than a general problem if that makes sense?

Ds is off today as he had a temperature yesterday. Two LFT say no covid and he's fine today, so hopefully I can get him back to school tomorrow. He did a little bit of maths work and some writing this afternoon, plus reading. I'm trying to do little bits daily with him; it's not exactly a FT education though!

danni0509 · 25/04/2022 16:55

I think they meant behavioural strategies he’s not retaining open not so much his work, he’s not really doing much of that in the first place!

so like if he does something wrong, which is often, they try teach him what it is he should be doing instead, so the behaviour that they want to replace it with, but because he’s so heightened, it’s not registering.

OP posts:
danni0509 · 25/04/2022 16:56

sorry your ds was ill. And fingers crossed for getting him in tomorrow!

OP posts:
openupmyeagereyes · 25/04/2022 17:00

Ah, I see. That makes more sense.

carriebradshawwithlessshoes · 25/04/2022 17:54

I think like we have said before Danni for any child to learn they have to be (I’m pinching ImitatingDorys words) ‘levelled off’ in terms of their emotional state. That goes for learning academically and learning behaviourally. It’s fab they recognise how bright he is and that can’t be downplayed. But it’s getting to that levelled off position, isn’t it, and then I’m sure he will flourish.

I think sometimes children aren’t levelled off because of the environment or whatever and simply changing that or bringing in the right expertise can give them a better foundation. But I think that only goes to a point and after that many children do need meds to a degree to unlock their ability by giving them a level platform on which they can build.

I think he’s loads of potential and hopefully with a multi faceted approach he really can make strides. You just want to feel that the school are on board with that and are willing to work with the others to be on the same page to get him to where he can be. That story from today was awful I’d be flipping my lid about that!

carriebradshawwithlessshoes · 25/04/2022 18:35

And I hope DS is better soon Open!

Thoroughly fed up of DS at the mo re the toileting. 4 accidents today. The continence team tell school to take him regularly and write down what’s happening. So they are taking him every 30 mins but it’s not working. Some days he’s fine. Others they will take him at say 2pm for arguments sake, he may go (or not go) but then still have an accident at 2.15. They say sometimes they think he’s not even aware that he is going. Certainly once he has gone he’s not bothered and just carries on his business.

just don’t know what to do about it. Find it absolutely depressing. This has been going on now for years and it’s just not moving forward.

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