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Thread 12. Autism and any other additional needs.

1000 replies

danni0509 · 29/05/2023 19:31

Thread 12.

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!

Just typing quick as ds needs to get ready for bed. I’ll link the previous threads later.

x

OP posts:
carriebradshawwithlessshoes · 31/08/2023 14:35

Oh did I say we had a letter saying ds is now not on the bus (delayed response to his screaming phase.) he’s now got a taxi there and back. Will see how that pans out.

bryceQ · 31/08/2023 14:41

carriebradshawwithlessshoes · 31/08/2023 12:59

@bryceQ DS is non verbal and has just turned 8.

Schools are tricky. I recall a poster saying SSs were not quiet or gentle places which wasn’t in line with her child’s presentation and since DS started last Sep I would agree with that. In fact DSs reports says for months that he was superglued to staff and not comfortable in the environment at all. I still don’t think he likes it (neither do I) but he tolerates it.

It’s interesting that school can identify that DS has had enough after that period of time given that he can’t say so. Eating mud and stuff and behaviour fluctuations seem par for the course in SEN schools, certainly at DSs I don’t think they would be flagging those things as being a sign he needed to come home. Is the autism school you mention for a range of asd children or the HF ones only?

Sorry I wasn't clear, when my son wants to leave he will become violent and cry. They have to remove him from the room and take him somewhere away from the other children. The mud eating is daily, he has pica.

The specialist school has two strands. One for the more academic autistic kids and one for those with more challenging needs. My son would be the latter. He is significantly delayed.

carriebradshawwithlessshoes · 31/08/2023 14:44

Ah I see… at the SS they may well have strategies for those times. It sounds like he’s in a good place for him now.

carriebradshawwithlessshoes · 31/08/2023 14:46

Otherwise it’s been a nice end to the hols! A few lunches out, trips to the playground, seeing family, going to the coast Sat. Weather is good here so DS happy to be reunited with his garden equipment.

bryceQ · 31/08/2023 14:50

He is still at objects of reference stage. We have an AAC but he isn't engaging with it yet. He can't connect pictures to items. He is highly technical on his ipad though. He's amazing how fast he is and what he works out.

carriebradshawwithlessshoes · 31/08/2023 14:52

Aside from pictures can be spell? Read? Can he connect a written word / sentence to the thing itself? Could this be a communication form used via the iPad?

bryceQ · 31/08/2023 14:52

Eg he can give me his cup if he is thirsty but couldn't connect an image of a cup yet

carriebradshawwithlessshoes · 31/08/2023 14:53

So select ‘I am thirsty’ as a written tab (no picture required!)

bryceQ · 31/08/2023 14:53

No to any of those. Developmentally I think he's around one year

carriebradshawwithlessshoes · 31/08/2023 14:54

Tbf some of those pictures are a bit of a joke. I’m often thinking ‘you could fool me if that’s a….’ 🤣🤣🤣

bryceQ · 31/08/2023 14:54

When it comes to communication I mean.

On his ipad he can navigate it amazingly, he knows where 50 or so songs are located, how to go between different apps across android and ios, which app has which film he likes, it's really amazing what he can do

carriebradshawwithlessshoes · 31/08/2023 14:55

In what way is he technical on the iPad then? That sounds very good cognitively (way beyond a year…). I wouldn’t say that about my DS and he can read/ spell…

carriebradshawwithlessshoes · 31/08/2023 14:56

We crossed… that sounds like bill gates, far more than one year! 🤣

bryceQ · 31/08/2023 14:58

If he has a playlist with 70 songs, he knows where most of them are located he must be reading the pattern of the words as lots have the same icon, eg if he has 4 songs from the jungle book. He knows the scenes to navigate I'd say about 50 movies, his memory is phenomenal. We got him a new kindle this week as he smashed another ipad, the interface is totally different and he worked it out within seconds.

I mean if they were plotting his communication on a milestone map, he would be around a year. He doesn't follow instructions etc

But there's something wonderful in his brain around movies, he has loved them since being really small.

bryceQ · 31/08/2023 15:00

He can't pull his pants up or show me he has done a poo though 😂 it's a very unusual brain he has

openupmyeagereyes · 31/08/2023 15:08

carrie Yes. The EHCP document comes from the LA not the school. They probably asked you to approve what they submitted but LA completes the final document. You should make sure it has everything you agreed included.

carriebradshawwithlessshoes · 31/08/2023 17:12

Though as we are renegotiating it again as part of this years review next month what this one says is irrelevant I suppose?

dimples76 · 31/08/2023 17:36

Carrie the paperwork here is always out of step eg we had AR for 21/22 in October (meant to be in April postponed due to pending Tribunal hearing) draft issued in March and finalised in May but in April we had 22/23 review. Now chasing paperwork for that, draft is meant to be within 4 weeks and finalised 8 weeks after that....

DS went to the adapted bikes and trikes place again today and seemed v happy. Glad that I found them. Also gave me a chance to take DD swimming. We then all went to an airfield with cafe and sat outside in the sunshine watching the planes. It was idyllic ...for about 10 mins. DD is being rather painful today - DS observed that she was behaving like him! He also asked who DD's 'person' would be when she starts school by which he meant her 1:1. He is quite perplexed that she won't have one.

danni0509 · 01/09/2023 13:55

Bryce when you say your ds has a very unusual brain, to us, yes. But actually that’s really typical of autism. My ds (9yr old) can do things that I (34 yr old!) would struggle with.

But at the opposite end of the scale, still talking about the same 9yr old child, he can’t do things a 2 year old can do with ease. He has such deficits with things, years ahead with some bits, years behind with other bits.

Its called an uneven profile of learning (or spikey profile) and its really common.

My 2 yr old nephew is autistic, he can’t ask for things, doesn’t understand communication at all, but he has an iPad he can navigate exceptionally well. Ds was like that at 2 also.

carrie I get emails like that every year. I never respond. Pointless. they don’t even spell ds name right on his ehcp, they call him something that sounds like his name but a letter different. It’s literally not worth the paper it’s written on. I correct them every year on the mistakes from the previous year, they edit it at his annual review then the amended plan says the same mistakes. Parts of his ehcp talks about things from nursery age, I’ve told them every year for at least 4 years to take it out, every year it’s still in there. 😡

It’s the woman at ds school who does the annual reviews and she’s as thick as shit. Then again his old school were the same as some of the mistakes are from when they did it and he hasn’t attended there for over 2 years now.

I just think whatever, his targets are shite too, every year, just really basic. An ehcp is just an expensive passport to a special school in my opinion. I don’t care if people don’t agree. That’s my experience of it all.

Hope everyone is well. 5 days left until ds returns to school.

I’m bankrupt. 99% of the way there to being classified as clinically insane, I’ve put half a stone on, and I look like what I expect it looks like when you dig a dead body up from the Cemetery 🤣

I’m completely done in and patiently awaiting a bit of respite next week.

OP posts:
dimples76 · 01/09/2023 14:01

Well the formal complaint re AR delays was effective. I sent my complaint at 7pm yesterday and by 10am this morning I had a reply from the case officer. The final EHCP should be issued today. Unfortunately, I will then have to appeal as his current mainstream school (who have advised LA that they can't meet his needs) will be
named. The special school I asked to be consulted has said no space - need to get a copy of response to see exactly what was said. LA is still also removing the OT (that I secured at Tribunal last summer). Fun times! I think part of me was still hoping that I might not have to fight again. Apart from week 2 of the hols (dangerous behaviour towards in paddling pool) DS has been much better in the hols than during summer term so feeling v apprehensive. Combination of this today is making me rather tearful today.

dimples76 · 01/09/2023 14:02

Danni you're nearly there! Also broke and weight loss stalled

dimples76 · 01/09/2023 14:06

Jaberwoccky how are things with you

Jaberwockky · 01/09/2023 14:07

@danni0509 Have to say I agree, I’m fairly sure DS’s EHCP still has a totally random surname on it. Honestly I think we’d probably do a better job of writing the reports ourselves.

@dimples76 the bikes and trikes place sounds like a brilliant find, glad DS is enjoying it.

Hope everyone has had a good summer, I’ve been lurking but not much opportunity to post, DS2 has had a small operation, DS1 discovered the phrase
big jump’ which coincided with cracking his head open on the end of the bed and DN and DS2 are now mobile, so three to keep eyes on who we likely to do at least 300 dangerous things each per day 😁 I’m shattered and delighted to be back at work Monday. The children can be DH’s problem for a bit before school and nursery start.

Still no specialist placement for DS, so the LA have finally bothered to tell me and the school he’s going back to his previous school but are hopeful it’ll be for a half term at most. Agreed it will be full time, and amazingly they’ve agreed to transport (less than one mile) as I just flat out can’t keep DS safe when travelling anymore without a second adult. I was expecting more of an argument, but hopefully it’ll help him when he does transition to SS in that transport won’t be a whole new thing.

Though I am dreading trying to get him on the minibus on Wednesday.

danni0509 · 01/09/2023 14:10

Dimples my ds is being very observational and not understanding that kind of thing at the minute, saying things like why does that child (usually of a similar age) not have someone supervising them? Why are they allowed to do that and I’m not allowed? Why can that child do x and I can’t do that?

I’ve explained and explained but he doesn’t understand it. He’s furious he can’t do some of the things he’s seeing other do but he doesn’t grasp it’s for good reason. It’s causing a lot of aggro in my house at the minute.

Im seeing some of the other kids that went to ds mainstream school out and about alone now. Ds doesn’t know or remember them thankfully. Seems to be they are being allowed more independence and being trusted to go to the local park / shops alone. Sad really as I can’t even see ds being allowed to do that when much much older, he just cannot be trusted sadly.

I took him to town on Wednesday to get some bath bombs, he ran off into NatWest bank and pretended to hold a gun up shouting at the top of his voice ‘bank robber bank robber’ All the staff and customers where looking like what the fuck are you doing, wouldn’t be bothered but he wasn’t joking, I got him and pulled him away and he started hitting me as he wanted the money from the bank. 😳

OP posts:
ElizabethBennetsBoots · 01/09/2023 14:18

Yep I'm broke too!! Had a training day at work so DS is more dysregulated than usual this avo.
@dimples76 appeal appeal appeal! Being full is no reason not to offer a place. Feel free to PM me.
My DS has a spiky profile too and often appears NT until he gets disregulated and then he's falling into stuff, being silly, etc etc. And it's harder for him to regulate then. Still, almost the weekend and then back to everything next week.

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