Primary school auties : spring 2021 and beyond - thread 6

[danni0509]

Hi. 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

Everyone welcome x

The specialist teacher was off 4 days last week with her son who was poorly.

I asked this morning (couldn’t ask the other day as his class teacher didn’t come out) they’ve sent the dinner lady out for him again so I’ve said this morning, what’s going on?

So she was in 1 day (the day i see her think it was Thursday) and the rest of the week off. So she worked 1 day out of 5 last week.

So she’s been off for burst pipes, then she was snowed in and now her son being poorly.

She’s off this week aswell so I said why because of her son again? And ds class teacher just said I don’t know the reason for this week.

She’s been there 5/6 weeks and been off more than she’s been there really when you take off half term etc!

So I said ok, well (head teacher) needs to request another member of staff from the agency then as this is a joke!

Doesn’t matter ds is full time now he’s supposed to be having specialist teaching which has been paid for.

I agree danni. Are the LA team aware of this? Absolutely taking the mickey.

Ds went off to school fine this morning, hopefully he'll have a good few hours. We are keeping this week the same while he settles back in. Hopefully next week we can increase his day a bit. He's been pretty settled this weekend thankfully. He had a massive tantrum when we went out for a walk the weekend before (because he wanted to do something he wasn't allowed) so we just stayed in the garden this week. I don't feel bad about that when he's getting out to school every day.

That is ridiculous isn't it Danni

Hope your DS has a good day Open and that stuff stops getting thrown out the window Liv.

DS seems to be in quite a good place apart from toileting so I'm really trying to play that down.

dimples that sounds like an improvement. Hopefully the toileting will follow.

Good day at school here. I am always relieved

I'd raise it with the LA @danni0509, that is ridiculous.
@dimples76 ignoring the toileting is usually the way to go here too!
@openupmyeagereyes glad school went well.
I am starting to worry about the change next week when all the kids go back.

MrsDuBeke there's always something to worry about, isn't there?

This morning was the first day that ds said that he didn't want to go to school and that he wanted to stay at home. I'm pretty sure it's mostly a transition issue but will see how he is at school for the next few days. Hopefully a blip...

dimples was it your ds that started music therapy? How is that going?

Ds bit his 1-1 yesterday on her arm and pierced her skin the teacher came out at the end of the day to tell me he had bit her quite badly, he bit the dinner lady last week on her leg and tried to bite the specialist teachers arm (on one of the rare days she was actually in last week!) 😔

Last night I said he couldn’t have this chocolate tea cake thing until after his tea so he started tantrumming as he wanted it that minute! I said ds as soon as you have eaten all your tea you can have it. So he grabbed me and bit my arm aswell! So he didn’t get it at all.

I’ve warned him he bites again he’ll lose his chocolate after his tea every single day he bites. Nothing I banned would get to him as much as that, he’s a real life Willy wonka. He gave me fuck all night even at bedtime he kept shouting and starting with me but he’ll have to learn and I’ll just have to put up with it until he does.

I’m not having that. Hitting and pushing is bad enough (except he doesn’t really hurt when he hits you not that it makes it any better) but biting! No chance. That does hurt and actually piercing peoples skin 😳 it’s shocking.

He really does embarrass me!

Specialist teacher still off, she worked 1 day last week, not been in at all this week and had the week before last off on half term.

No idea! I asked his teacher again and she said unfortunately she only knew as much as me.

I asked if (headteacher) had phoned the agency and apparently the agency were waiting to hear back from the specialist teacher.

I honestly think that ds has scared her off. She’s assumed that if he’s in a mainstream school he’s probably not that bad, then she got a shock when she has seen him, what makes me think this (not making my own assumptions based on knowing what ds is like 😂) is something the head teacher said to me a few weeks ago about her having a frank conversation with the specialist teacher on what to expect off ds and the head saying that she had had her eyes opened when she worked with him etc.

Special school staff turn over is high for a reason.

My sister in law worked in them for years, she said they always leave because the teachers don’t like the challenging behaviour.

Even my SIL left and went back into mainstream for the same reason, she teaches year 2 in mainstream now.

Ds current 1-1 left last year (the one he bit yesterday) she went to a special school for secondary age (like a PRU) and came back to ds school about 3 months later, I said to her was it that bad? And she said I don’t want to talk about it and laughed 😂

What I always find sad with that though, is the poor parents have to deal with it with no chance of escape and usually with next to no support from anyone!

Danni I have a friend who's a music therapist, she worked in a PRU for a while and said it was really depressing. It actually put her off working in schools entirely. I think in her case she felt like the school was really letting the pupils down.

Interestingly so far ds's ss has had the same staff since it opened in 2019. I guess it depends on how much support the teachers get from the leadership team. I think that goes for mainstreams too.

Hope you managed to get him in open.

I've booked to have my vaccine on Saturday! Amazing as I wasn't sure if I qualified as a carer but apparently I do.

We've been having a lot of meltdowns and challenging behaviour here but I think it's really just about the change of routine. Hopefully when he gets back into the swing of things it will be better. And in any case from next week at least there will be more respite with both kids at school full time!

danni it's easy to feel embarrassed because we think it is a reflection of our parenting, or we think that that is what others think, but you know it's not your fault. I hope that the TA is ok and that it was fairly superficial even if it did draw blood. Do you think that your ds will be able to link the biting with not getting his chocolate? Is there a way of positively rewarding him on those days when he doesn't bite instead? It's so tricky, I know.

Last night ds had a massive tantrum about switching off his game. He was really angry with dh and wouldn't leave him alone, pulling at his clothes and trying to bite them (he does this instead of actually biting us but as he pulls it's really not good for his teeth). This went on for maybe 20-30 minutes and he really only calmed down when I threatened to put his game away so that he couldn't have it. Then it was almost like a switch flicked and he calmed down within minutes. It's so frustrating because I want to use a positive approach but often ds' tantrums go on so long you just run out of ideas in the end as nothing seems to work in the heat of the moment. I think the trick is to work on the positive stuff while things are calm and then just weather the storm when they are in a rage. It's so hard though when you don't know when it's going to end and as they get bigger and stronger.

liv I did get him to school today but my hopes are fading that this will continue. Teacher has emailed to say he's had a good morning though, so who knows. I'm glad you've got your vaccine booked. Did you contact the GP or did they contact you? Hopefully ds settles down once he's back in a routine.

I contacted them open and asked to be put on the carers list.

Open well done on getting him in and glad that he's having a good day so far. Yes, DS had music therapy in the Autumn. It was all done via Zoom and he is on a waiting list for face to face sessions when they resume. I think that he would have got a lot more out of doing it in their offices and tried out other instruments. There were moments though when he was doing them when he looked blissfully happy! DS is learning the violin at school this term and is loving that too. He really wants a piano but I don't have the space or the money for that.

Danni DD is in an excitable biting phase at the mo. I agree much more painful than being hit but the pain does fade quickly. Please don't blame yourself for it.

I got my vaccine on Saturday too. I had to register with my Council as a carer and then GP's registered me.

Six weeks until I return to work - think that I'll be buying some lottery tickets

So sorry about the biting @danni0509, how stressful. Sounds like you are handling it well. I don't really see what else you can do but I still feel like consequences like that can work... it's hard to think of a "natural" consequence as the natural consequence is his 1:1 doesn't get to work with him but that's not going to be very immediate and obvious so doesn't really work.

At the same time, hopefully they recognise that all this chopping and changing of 1:1s must be very stressful to him, and that he's much more likely to show anxiety behaviours like biting if he's stressed out from too much change and uncertainty.

Do you have any more news on when they might have a place for him in the new school? Is after Easter still possible?

Glad your DS managed to go in @openupmyeagereyes! Hope having a good day helps him make it a regular thing. I think you are right about managing rages. None of us are very rational when we're in that state, so there's no point trying to do clever reinforcement techniques in that moment: you just have to do whatever you can to try to take the heat out of the moment. Not easy.

And great news on the vaccines @livpotter and @dimples76!! I'm loving seeing all my Group 6 friends get jabbed. I'm over 40 so hopefully my wait won't be too long either, though I guess it depends a bit on whether they manage to ramp up the numbers when the second doses kick in in earnest. They seem quite confident though and I've seen references to a "surge" in supply in mid-March so I'm keeping everything crossed.

We're all good here. World Book Day today and DD was very keen and basically sorted out her costume herself. She didn't manage to speak on the class Zoom (which she usually does - I think being in fancy dress she didn't want the focus on her and felt self-conscious), but she seems to be having a good day. She's really looking forward to going in on Monday. DS had a good birthday and seemed really happy with his presents and his cake, and work has been OK.

My vaccine appointment came through too! Good luck for everyone getting it this weekend.
@danni0509 that's hard behaviour. DS often gets stuck with challenging behaviour that then becomes part of his routine so we have to totally change a routine to sort of unlearn that behaviour out of a routine if that makes sense? I make social stories too with specific times in routines etc.
I'm already worrying about the changes next week but never mind! Happy weekend everyone!

I was rather thrown by a very disappointing email from ds’ teacher on Friday. I’m trying to give the benefit of the doubt as she has generally been reasonable and dh says I am reading too much into it...

Anyway. It has got us thinking about whether mainstream is the right option for ds. He’s about 2 years behind we think and next year will start KS2 which will be much harder. I don’t think this would have been such a big gap if not for covid - basically he’s only been in school approximately 50% of one term in the past year. Theoretically he could make some of that up this year but he is currently resistant to doing much work (hence the email...) in which case this will not happen unless things change. I feel that it’s early days yet and we shouldn’t rush into anything (as if that could happen anyway) but his time at school is flying by - already halfway through year 2.

Special schools are so full though and I know we would be told he is too ‘high functioning’ blah blah. I’m feeling quite overwhelmed by what the right course of action is. Ds is bright but definitely does not pick many things up as easily as his peers and if he’s so resistant to academic work is ms really the right place for him? Or could it change as he matures a bit? So many unknowns

That's so hard open. There is so little provision for higher functioning children who can't quite cope with mainstream. Do you have any schools with autism units near you?

Hope everyone else is ready for next week! I'm also dreading trying to get them both in tomorrow. I have a feeling it might be harder to get dd in than ds!

Had my vaccine yesterday. Felt awful last night but feeling a bit better today. Hope you feel ok on your's dimples!

I don’t know liv, we need to find out.

Good luck tomorrow, hopefully she will enjoy being back.

Good luck with school @livpotter
@openupmyeagereyes we are in a similar position with DS who is repeating reception already and i still don't think will cope well in year 1 in mainstream. He is high functioning when his needs are supported (otherwise not if overwhelmed etc) but he also has sensory processing difficulties and motor skills delays. Lots of need for proprioception input so can throw himself about a lot! I wouldn't totally think about special school as not being appropriate. When we visited the one we're currently trying to get named, we were worried that DS' needs wouldn't be enough, and we were wasting everyone's time. In fact, the head spent some time with DS, and got his needs right away, saying he'd fit really well there and there were other kids in that year group very much like DS (even other maths fiends!) So You never know until you get in touch etc. I had this idea of special schools being very low achieving etc, but that's the stereotype, not the reality. They often have different pathways that kids follow depending on severity of needs and conditions etc. You're right that it's hard to get a place though. Good luck with it all. I think for us, special school would mean more chance of inclusion for DS, rather than being just with his one to one most of the time. That and peers being similar to DS.

MrsDuBeke it's the LA I would expect the pushback from, not necessarily the school. I don't really know what is best but I guess the start is to see what schools are within a decent radius and take it from there. Realistically I think we need to allow some time post-Covid for things to settle down, have his annual review at the beginning of next term and then re-assess towards the end of this academic year, having looked at what's available.

I really struggle with the needs vs wants terminology as relates to ds. Ds might want to play his Switch all day long but it's a want not a need though he may not see it as such. Similarly, at school he might not want to do any academic work, but does that mean that he shouldn't be expected to do any, or be pushed out of his comfort zone at all? We wouldn't accept that for a NT child. As he gets older I hope that he will be able to explain what exactly he finds hard and why. At the moment we are a bit in the dark. His school have lots of adjustments in place for him and I am struggling to see what more can be done. I feel we need professional help, someone who can actually go into the school and work with them and him. If that is not an EP (who has already 'seen' him recently, then who?

I hope that you can resolve things for your ds. It's such a worry isn't it.

It really is and yes to push back from the la. We are currently experiencing it but on we go. The fight to get our kids what they need is real isn't it and it shouldn't be this hard.

The first step
Is identifying what they need. I don’t think we are there yet, sadly. How to find out is the key.

It is so hard isn't it. I think prior to covid DS was pretty much able to keep up with the mainstream curriculum with support apart from writing. Now it feels as though the gap between him and his peers his widening, which I think may have happened any way at this stage but will never know. When I was homeschooling I did think that he really needed to step away from what his classmates were doing and focus more on this key concepts that he isn't yet secure in. I imagine that school would say that they can meet his needs: he's making academic progress, appears fairly well regulated at school and is a well liked member of the school community. So I think that my chances of getting a special school place would be tiny at the mo.

dimples yes, Covid has thrown a massive spanner in the works. I know lots of NT kids are also struggling but it isn't quite the same for our dc, they don't catch up so easily and it takes them longer to adjust to the changes.

Maybe ds is not quite two years behind - I guess that would only put him at reception level, and I know there is a range for every class. During lockdown I had him working through some year 1 CGP books for maths and English. For maths he did pretty well with the support of me reading questions to him and keeping him focussed, reminding him of the techniques we needed to use, that sort of thing but he is still not secure in things like numberbonds. English was more of a challenge in some areas as we got deeper into the book, reminding him of which letters are vowels and consonants, using the right phonetic spelling to fill in the gaps in words etc. He's just been moved up a book band to level 5 ORT equivalent so he is making progress, I just feel the teacher was quite negative when he's only been back a couple of weeks and has spent the vast majority of the last 12 months out of school.