Primary school auties: summer and the new academic year - thread 7

[openupmyeagereyes]

New thread.

This is the continuation of the thread for parents / carers of autistic children / children with additional needs. Most of us are parents of children in year 1 / year 2.

Links to old threads

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

It just seems to be all the schools ds goes to that do part time hours 😂

We're on part time too danni, though agreed by us which is not the same, I know.

carrie this is just urgent repairs, not renovations. Can't wait until it's finished!

Ds did his additional hour for the first time today, (he does 9.30-1pm now, so 3.5 hours a day, out the house for 4.5 hours with travel time so bit extra time for me to get stuff done at least) he had his lunch (well his Jaffa cakes) with his class and played with a boy. They said he’d had a good morning.

That’s great danni. Sounds like he’s having more good days than bad?

Bad one here. Apparently DS has started up (again) biting and scratching his one to one when she is asking him to do things. I honestly can’t say he does this at home. School making a huge thing about it. I honestly don’t know what they should do?? Has this been an issue with your DC ever did this reason?? How should they deal?

Obv I bollock him as do they but in their words he still does it, regardless….

carrie what is the situation at school? Does he have somewhere quiet he can work or is he supposed to be in the classroom all the time? What do they typically do when he doesn’t want to work - do they offer choices from a few different activities with time for an activity of his choosing as a reward? Do they use a visual timetable and now/next boards with him?

Possibly this behaviour is because his other ways of communicating that he doesn’t want to do particular activities are not working, they are persisting and he’s escalating. It’s either the environment or the work that he’s objecting to. Would he really react like this if the work was simply too easy (as per the OT) as that seems quite extreme in that scenario.

I don’t think you can bollock this out of him. School need to model an alternative way for him to express his feelings and do so in a consistent way while changing their own approach.

I am not totally sure. He’s in the classroom v little. I suspect she takes him out into a quiet room to do work at a desk and obviously he doesn’t want to. I think he can do a lot and yesterday he apparently did but today for whatever reason he didn’t want to do it. He cannot say or sign or communicate he doesn’t want to do it in any way other than this but yet the point is, even if he said he didn’t want to work and learn that’s what he’s there for to a greater extent, isn’t it?? I’ll see what happens next week. But I understood that once today it was just in response to her asking him something in the toilet, not sure what, j suspect to pull his own pants up or wash his hands. Well he has to do that, doesn’t he? It’s v hard to know the answer!

At home I give an instant edible reward for work so 5 sums then a sweet. School won’t replicate that they say he should do the work anyway. So he’s probably thinking well where’s my sweet?!

even if he said he didn’t want to work and learn that’s what he’s there for to a greater extent, isn’t it??

Yes, absolutely and that’s why it’s so tricky.

I would have thought there were plenty of non-verbal ways you can show you don’t want to do something, perhaps they are ignoring these, that was my thought. A child might swipe the task on the floor, throw it, try and leave the room, turn away. That sort of thing.

They might not want to give sweets but they could alternate the work with another favourable activity, whatever works for your ds.

Yes open I think he’s generally on a whole being better at school, which is good, they send a comment home every few days saying he’s been a live wire / not listening / done xyz or drop an email detailing whatever hasn’t worked very well and then he has his days were he’s completely unmanageable and that’s when they ring me lol but he’s never going to be perfectly behaved. I think overall he’s more settled than he was. They are trying to include him with the class more and he’s now spending lunch with the class, he’s still having 1-1 and always will I think, he’s still in his own room but they are trying to join him in more. I’ll just leave them to it. But if you think he spent almost 3 years at old school completely isolated in a room with just adults and next to no classroom time / time with other kids, I’m not at all suprised he struggles so much. It’s completely alien to him.

His teacher emailed me this week to say if things are tricky at home with ds give him an email with whatever problem it is and he’ll try and help with suggestions, or if I just want to email him to vent he’s happy to just listen.

So that was nice.

I won’t email him with my list, he’ll likely reply back and tell me to fuck off

That’s so nice Danni!!

Yeah Open, I think various things. DS has a long history of mouthing everything in sight but this stopped about a year ago and he rarely does it now. But he does have this history of oral/ mouthing behaviour. He has lost one front tooth and the other is hanging out, with that he seems to have become very aware of his mouth again.

He would do all the things you mention to avoid work but his one to one is incessant and will continue to push him, she’s said that and tbh we have quite liked that as the old one last year just gave into him all the time and by the end of the year was dancing to DSs tune. The current one to one used DSs communication cards the other day and asked DS if he was fed up of her and he says yes. I think the continued demands from which she doesn’t back down get him very angry and frustrated especially against a backdrop of not being able to communicate. I suspect this tooth business is quite painful for him (he winces when eating and is only eating on his side teeth), I suspect he’s probably not up for her demands 8 hours a day but unlike any other child he can’t say ‘I’m not feeling well/ my tooth hurts/ I’m feeling tired today’ to play the sympathy card and has to then endure her drilling til he snaps. I suspect he probably wants to do more than bite her a lot of the time!! I can’t say this but whenever I’ve seen her she’s always literally on top of him, manoevering him around etc. I think she gets in his space. I know she’s only trying to help but actually stepping back literally and metaphorically wouldn’t be a bad thing I feel.

From what I read biting is quite common in asd kids or those with profound language barriers?? This is why I feel we have got to advance some communication system for him.

It’s a balance between encouraging him to actually do some work but not pushing him so that he reacts in anger. It sounds like she hasn’t quite got that right does it. Hopefully this biting phase will pass. I think an EP going in would be a really good idea if it’s not been done recently, but they are probably still doing things remotely which is not particularly helpful. Is he in year 1 or year 2?

Are you in touch with any other people with non-verbal children in a ms setting? I think it must be very difficult for the dc. I do not recall reading about many on Mumsnet beyond reception or year 1 but that doesn’t mean they don’t exist of course. It must be hard when they are bright, and the hope of course is that they do speak later (as many do).

Anyway, I’m no expert. Ms has not worked out for us as you know. Luckily ds has the chance to go to a new school for autistic children which will offer lots of pastoral support (I hope) alongside the academics which are still fairly ambitious. My worry is that ds will even reject that and it’s ‘school’ and learning in particular he is averse to, not just the setting, or that he does have learning difficulties that make this school not appropriate either. Catastrophising, moi?

I thought I’d posted an update yesterday but I must not have hit post.

Ds has had two better nights after his awful one. He woke at 5:45 yesterday and 5:15 today. He went into school every day last week which is great. He’s still only doing bits and pieces of work though. It’s an ongoing struggle.

Oh, and he’s only in for a couple of hours. I’m hoping we can extend it next week.

Thank you for your wise words Open. I will have a chat with the senco Monday.

Re your DS try not to worry at this point. But as I’ve said I would think at an asd school issues such as concern about going to school would really come with the territory! I think all the time about DS he can’t be the only one? I have no issues about there being challenges for our kids but I would fully expect in the right environment there to be proactive and effective strategies as to how to deal too! I think it’s exciting times for your DS! Hope your house works are getting sorted too (ok, emergency not a new outdoor pool 🤣🤣🤣).

I'm not sure there was anything wise there carrie, but I hope the school can work with you to help ds. He must be more frustrated by it all than they are. Possibly scaling back the demands and building from a stable base may help - getting him to do a few things consistently and then building rather than fighting to get him to do everything in the day that they might want.

Repairs are getting there, should be finished Monday but tolerable now, thankfully.

Only six weeks until Christmas. I'm trying not to freak out a bit!

Hi ladies sorry I dropped off the thread and didn't see all the new messages!!
@openupmyeagereyes glad your DS is going into school for some of the time and the new school sounds like a strong plan (esp if its where I think it is as I think I'm quite near you!)
@danni0509 great that your DS is happier in school and settling better, it's such a relief for you too I bet. Nice that his teacher said that too.
@carriebradshawwithlessshoes I honestly think our boys are extremely similar! DS was almost non verbal.until he was 3.5 and his challenging behaviour sounds so much like your DS' as does mainstream's reaction to it. DS basically does not like any demands, they cause anxiety, which then floods over into fight or flight mode. Too many demands equals challenging behaviours. School now do a 'DS' choice' after any group or academic activity where he can choose from a list of things he wants to do (usually ipad). That then helps Jim regulate himself and feel back in control. The demands then don't build up. In the zines of regulation model, something like hitting or biting would mean you're in the red zone, so you can choose something to calm down or if you're too heightened to choose, staff will take you to a quiet area to calm. No drama, no histrionics, etc. At mainstream, they fed the drama of it all, so.in the end DS was hitting teachers just to see what would happen, he lived the reaction. It also all made him feel very anxious, bless him, as he told me recently that he was scared when he got angry too but the grown ups seemed scared/angry so he spiralled in it all. Now, any hitting etc and you are taken to an area to calm down, but no recriminations, then a social story is talked through once the episode has passed. New day is a new start etc. The focus us on self regulation qnd and learning to spot your own patterns of when you get angry or hyper and why.
I also think that your DS is probably overhearing all the things school are saying about him and that's lowering his self esteem, making him angry etc. If DS is pushed too much to complete tasks and not given his activity choices, he also totally loses it! Have I mentioned PDA before? Learning about that was a life changer for us. Re the mouthing, DS still goes through phases of this, so we have a range of Chewelry jewellery that we can redirect him to.

Ha I mean him not Jim!! Also yes, Christmas is coming argh. 42 sleeps DS has informed me!
Sorry if I've missed anyone.

Thank you so much for that Magrat, I’ve mailed the senco this morning as I intended to do and coined a few of your suggestions, they are really good. I’m so pleased your DS is now being fairly treated in school and is doing so well. I’ve probably asked you (and the rest of the worldwide population) but how did your DS go from non verbal at 3.5 to speaking so well now?? Did you do anything? I’ve started a new thread on this asking about a SALT in our area but suspect I won’t get anywhere. It’s like the longer things so on the more ingrained not speaking is for him iyswim.

Bloody hell our weekend got worse. Thurs the new SALT I (thought I) had found for DS after I’d wasted hours with her decided he was too much hard work (I’d love to say that to my clients.) Friday we had biting/pinching-the-onetoone-gate. Sat I had Covid booster and felt terrible, Sat eve DS was super hyper/ happy screaming his head off in the bath. Knock at door about 6.30 I let DD answer as the Inlaws have form in coming round about that time. Anyway it was this old woman demanding to know what was going on/ happening with all the screaming and shouting, was everything ok?? Just someone random off the street not even a neighbour! I know you will all say fair enough, but really ffs, I don’t need a stranger knocking on my door asking why my child is behaving in an abnormal way, it’s hard enough for me that he is screaming… also felt v sorry for DD who looked quite upset.

Hope you are all ok… keep telling me days down to Xmas when I can stop worrying about school… xx

carrie I'm sorry you had a rough weekend, culminating with a stranger knocking at the door. It's the last thing you need isn't it, though I'm sure she meant well. I'm surprised it hasn't happened here to be honest with some of the emotive things ds shouts when he's really worked up.

Rubbish morning here. Ds very out of sorts after drop off and hitting and kicking his TA which he hasn't done in so long (as far as I know). One of his TA's is away for a school trip and I'm not sure they told him, they didn't tell me. Unfortunately ds now prefers her to his other TA and he wasn't happy that he didn't have her this morning. No excuse for his behaviour of course. He's been awake since 3am so already tired.

I'm not looking forward to dropping him off tomorrow but I don't think I'll be able to get him there anyway!

We're resuming play therapy tomorrow afternoon. I don't think it's going to help but I figured we may as well do some more sessions before Christmas and the move to the new school. It can't hurt, except our pockets though this is one of the cheaper things we've done. I think £42 per session whereas SALT and OT were £75.

Sorry to hear that Open. As you say, we all know how we feel when we are shattered, it’s really hard to start the day tired (you do amazingly well to manage too I’d be in bed all day if I were you!.) I know you say melatonin doesn’t work but might it re settle him at that time? I’m just thinking of our night last night, DS up at 4 as wet the bed. We gave him one mg fast release tablet and I pulled him straight in with me then lights off. He dropped back off pretty quick, I don’t actually think he would have the stamina to go all day if not. On the days he won’t go back to sleep school day he’s actually gone to sleep sat up in the library there!!

Like Magrat said (I’m liking this one) tomorrow’s a new day.

Good luck with the play therapy too. Know what you mean, OT is £80 a session!

carrie it was dh's turn to get up today so I was ok! We've only ever had slow release tablets. I am tempted to buy some liquid online but I don't think ds will be keen.

Ds has fallen asleep a couple of times at school in the past. He mostly powers through now. The tiredness by itself wouldn't cause this behaviour, there's more going on and he's been like this with us too about screen time. It comes in waves, he has settled periods and then times when he's more volatile. Hopefully it passes soon.