Primary School Auties 10: Summer and beyond 2022

[LightTripper]

Thread 10.

Ooops, sorry, filled up the last thread without noticing - here we are at THREAD 10!! (How did that happen?)

This is a thread for the parents & carers of children with additional needs. Most of us have autistic/ADHD children in primary school, but anybody is welcome to join us to chat x

Links to previous threads below.

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
Thread 9
www.mumsnet.com/talk/special_needs/4502988-Primary-school-auties-thread-9-spring-summer-2022

I’m sorry carrie, that’s really frustrating. It’s great that he’s going to start OT, hopefully they can work out what he’s getting overstimulated by. They should talk to you as well so you can give them some background.

Carrie what happened with the adhd medication, are you still on a break? Could you trial again for longer or try something different?

I honestly don’t have any real answers to help you, because I think the same, where do I go from here etc.

I do think the school are being a bit unfair to him though, he’s been there 6/8 weeks? That’s absolutely no time at all. And it’s not fair to make you feel like that. (It’s what ds school usually do to me)

And it’s a special needs school, they should be used to kids that can’t keep still or focus / engage, that’s what they bloody specialise in.

Ds school bore me though the way they bang on, it’s as though ds is the only child who has behavioural issues. I don’t reply anymore unless it’s positive as I can’t be arsed.

OT won’t hurt, ds had someone in, they do regular stuff throughout the day with him. I’m not so sure it works but it would be useful for them to try for him x

Ds has chucked an iPad on the school roof 3 times in one day,

A dolls house roof?! Bcos I’m fairly sure if I tried to Chuck an iPad on a roof I wouldn’t be able too! never mind 3 times in a row.

I am astounded by some of the things they keep sending me in an email! LOL I have just had to re read my email to check what it said.

Who is supervising these kids? How did he manage to get an iPad to keep chucking, and 3 times? How did he even get it up on a roof 3 times?

Im applying for the cube for him! 🤣

He’s still stealing toys daily too, they finally took his collection back after I kept emailing them and now his bags full again…….

Reminds me of ds at his old school, the caretaker bought him a big bag of Haribo on the last day and said I’m going to really miss my calls to come and retrieve items off the roof! 😂

I honestly don’t know how he does it, it used to be his shoes, toys from the classroom, his lunch bag, all sorts at old school.

Still on a break Danni with adhd meds, just found they didn’t seem to suit him and loads of side effects. Do you think they have calmed your DS at all? Ironically up and until a month or so ago DS was quite calm (school said still not doing stuff… I just don’t think he finds lessons interesting in the same way he doesn’t find toys interesting.) he fundamentally want to be under his own steam outside a classroom.

So great to have you back Danni. Wow that soft play adventure sounds scary and sorry to read that school are not being helpful.

Carrie it does seem like rather early days for school to seem a bit defeatist but hopefully OT will help.

My nephew returned to school yesterday and is much better. However, DS is ill (vomiting). He is feeling pretty rotten. I have his annual review tomorrow. Don't really know how it's going to go- school are struggling more with DS's behaviour but I don't think that they're at the point of saying that they can't meet his needs (which I want them to say to help get more to special school). I feel really exhausted as I have been up since 3am with DS then had a demanding day at work followed by difficult evening. However, both kids are asleep now. I do count my blessings that DS sleeps well normally.

Dimples ask them to say they are not meeting his needs, or say something like I do think he would be better in a specialist setting and see what they respond with, sometimes I think a school feel awkward in approaching you about it, especially if you have a good relationship with them, which is odd I know. It’s almost like they don’t want to offend you or get rid of your child! (This was my experience) I know it sounds bizarre but ds old school hung on to him for as long as they could and took a lot of his shit for far too long, and they were all genuinely heartbroken when he left. The headteacher wrote a note in his leaving book and said she was honoured to have had him in her school and she felt sad he had to leave. (I know I had my issues with them regarding hours and excluding him from everything, but they did really care about him)

When ds was in mainstream the pastoral leader phoned me when he had just started in year 1 and approached it very gently with me, and when I said I know he’ll go to a special school at some point she sounded SO relieved I had said it. She said we never want to make a parent feel pressured so we approach it very carefully as parents always have the right to remain in a mainstream setting.

Maybe it’s what they are thinking deep down that he should be in SS?

I hope today goes well, I’m sorry ds is poorly, and I’m pleased your nephew is back to school! Hopefully nothing like that happens again x

Also I think the way the LA operate, a school has to be practically on their knees before they agree to a move to a SS. Which is wrong!

Even with ds doing all he did, terrorising them on a daily basis, it was a process which took a lot of meetings and gathering of evidence.

Once it went to panel it was a straight forward yes, but it took a long time in putting the plan in to action, so I don’t think it would hurt for you to approach it today.

You always have the right to request it x

school discussions all sound tough. Also not what I'd expect from SEN schools in particular. Sometimes when we get feedback about DD I feel bit like, what do you actually suggest we do, we're trying everything.

Hope the review goes well @dimples76 . Sympathise on the lack of sleep. We had a terrible night, up from 1-5. I tried music, massage, calm videos, but nothing worked. She only went to sleep at 10 so I'd thought that would have helped, not going too early. She was clearly trying to get to sleep, but just seemed like nothing was helping. This seems to be about 3 out of 4 nights nowadays. I've gone from sitting there in tears to just feeling so numb in a way. Such a struggle to find any motivation for work or really anything in the day. Pretty depressing.

Hi @carriebradshawwithlessshoes you were asking about our friends' son. He does use sounds but doesn't use words I don't think. He does use some kind of PECS (it's a book of pictures - not sure they do the formal exchanging thing) to request e.g. food or what he wants to watch on TV - but not sure how long he has been doing that for. Apparently he hasn't tried AAC: I'm not sure if your DS has? That might be worth a go even if he doesn't engage with PECS?

He's a really happy boy - they actually moved house but still go back to his old school as he likes it so much there - which given the average experience of schools on this thread seems like a miracle. I'm not sure what they are thinking longer term. I think the main worry with him is he's so sensory seeking so he's fascinated with water, cars going fast, etc. so it's just a physical danger thing that they really worry about most.

I can't remember if I linked it before but Nurturing Neurodiversity has a series of videos on speech disorders that might be interesting. Obviously there are lots of reasons for autistic kids not to talk that aren't speech disorders, but I thought they were really interesting videos.

Sorry about the sleep troubles, welcome back @danni0509 and good luck with the review @dimples76 !

Just a quickie to say thanks for these light x

And yes, sympathies too re sleep issues. Ahna, I am completely like that after a bad night, I just stare at my screen and nothing gets done, then I snap at the kids and DH and eat loads of sugary crap for a quick but short lived energy boost. If you take her into bed with you will she stay there? Sometimes Ds will toss and turn but it does allow me to fleetingly drop off. Are you doing anything further re melatonin/ other sleep meds?

hope the review goes well Dimples. I agree, if you push for a SS I can’t see the issue. Whether school are meeting DSs needs is a question surely for both parties isn’t it and you obviously feel they aren’t. It’s also a hugely subjective question, needs is a big word and even if you think school are meeting them but somewhere else could meet them better (which is surely the point) I’d be arguing quite forcefully that school aren’t meeting them (in your view, I’d be laying it on thick.)

@carriebradshawwithlessshoes no sadly taking into our bed doesnt work - she either continues the meltdown or starts running wildly around the room. I sometimes try joining her in her bed (it's a single mattress under a bed tent, so there's just about room..) but mixed results whether she wants me there or not. Mostly not. It just seems like whenever she wakes in the night, she will definitely be awake for the next 3 hours.

Melatonin just made things worse so not sure where we can go from there. Slow release maybe in a few years if she can swallow whole (although truly hope we aren't still having this then). Could possibly give it to her at 1am instead of the start of the night but not sure if this just encourages bad sleep habits. I just don't know.

Had a house visit from the speech therapist who does the Hanen course and DD just had a meltdown the whole time, total waste of time. IT's always depressing when people who work a lot with ND kids still give you that look of "wow, it's really bad hey"

Some interesting things came out at the review. Not least that the OT provision that I went to Tribunal for is still not in place - report was received May 21, revised EHCP issued September, appealed November, hearing June, order July. Agghhhh! However, it is starting the week after half term hols so I held my frustration about that in check. DS has been reassessed and still found to be on 0.1 centile for the movement ABC assessment.

DS's caseworker was there - there hasn't been one in attendance since the original formulation meeting. She was actually lovely and seemed to really listen (different person to the last caseworker). Danni v similar attitude with school - they agree he needs special secondary school but I can't envisage them saying that they can't meet his needs (I have told them that I want special school). Caseworker said that all special schools are full to bursting. She seemed quite honest and said that if I asked her to she would consult special schools now but that the LA would name his current school in Section I which I could then appeal...As it turns out today was last year's review (it was delayed because of Tribunal hearing) so there's going to be another in May. She also said that they would class DS as having severe learning something (can't remember what word she used but not disability) as he is mostly working towards yr1 levels even though he is in yr4 (and if I hadn't delayed he would be in yr5). I feel that I need to get my ducks in a row more and then go for a change of setting/transition planning in May. I can't remember if I mentioned it but I was thinking that if I can't get him into a 3-16 years ss then I would try to move him to special secondary school at the end of yr5 as he would then be 11 and I really don't think yr6 at his current school would work.

Ahna that sounds like a tough appointment.

I am looking after my nephew and niece again as my nephew is having another severe asthma attack and they're back at hospital

Oh no - is this a recent thing or has he had these attacks before? What a worry. Bet it's such a relief for them that you are able to help with the childcare though so they can really focus.

School appt sounds mixed for you. Such a frustrating situ with waiting lists for special school. Is caseworker linked to school or totally separate? Sounds like you have a plan of sorts re the yr5 move but wow it all sounds a lot. Nothing is ever straightforward it feels like.

@dimples so scary, hope your DN is OK. LA tried to tell us DS was fine in ms despite everyone else agreeing for special provision. We won tribunal. Their being 'full ' is not in itself a reason to decline a place.
@ahna68 sorry the appointment was hard although it all feeds into a picture of needs etc. Hugs.
We are OK, DS has another cough and school are a bit moany about it although he hasn't coughed since he got back. The problem is if they say oh how's your cough to him, he thinks oh yeah I've got a cough, and it sets him off again. Argh. I have important meetings at work on Friday.
Positively, he joined with a lovely dance movement class today and kept focused in it, which is huge for him, and he wrote a sentence independently hooray!

So sorry dimples. I hope they can get it under control so this stops happening.

That sounds great with DS other than the cough @UnoQueeny !

And thinking of your nephew @dimples76 - so scary. I really hope they can find a way to get things under control so he doesn't need to go in again. Let us know when you get news!

Thanks for all the messages of support. DN is in hospital and his breathing has improved. However, they are very concerned that he has has 2 life threatening asthma attacks in less than a fortnight so the consultant is concerned as to how his body will cope if he relapses.

Meanwhile I now have the stomach bug that DS had earlier this week. I have had to ask my stepmother to collect DS from school. Hoping he sees this as exciting...DD is traumatised from seeing me be sick.

Hope that you are all healthier and happier than me and mine.

dimples I hope dn is doing better and that you are too. I agree, mixed feelings re AR, you have a lot to think about.

ahna I hope sleeping has improved for you.

danni sorry school are moany again. Is ds eating better now?

Uno I hope ds’ cough is better. Great progress for him at school.

I will be glad not to have school next week. Dh is working so ds and I will do some days out. Ds actually stayed in school for 2 1/2 hours on Friday, I was starting to worry he’d got out and they hadn’t noticed, but TA said he’d had a fab morning. Teacher was out so I’m not sure how much work they did though.

@dimples76 hope the tummy bug is gone / nearly gone. So grim for you all

we are away for long weekend visiting family. I was very close to bailing and sending DH alone - just no keenness for travel or anything really when so tired

had a nice day where Dd loved the sea but then just so many meltdowns too, a 12-5 awake last night and complains from the people renting apartment above. Gah. Today she seems unwell, but could also be mild sunstroke, think she’s prone to that as not good at remembering to drink. Could also just be that she’s tired. I am looking forward to getting home tomorrow.

sleep starting to have more and more impact on mental health and also feel so run down - waking up not breathing , bad skin etc etc - think it’s all connected though, just need a stint of rest.

@UnoQueeny how’s the cough?

Ahna I’m not surprised it’s affecting you, it’s unmanageable. Have you gone back to paed/GP? Does your dh help?

@dimples76 hope you're feeling better now.
@openupmyeagereyes great news for your DS, him settling is such a big step forward isn't it, great news.
@ahna68 oof sounds tough,hard with the complaints too. I think if you don't have experience of sen, it is so easy to not understand or be judgy, big hugs.

Cough is getting better but change in air temp always sets it off. We've thought he might have asthma in the past but no, now they think it might be a leaf mould allergy! He's had a nice weekend, we went for a walk today which was lovely and scenic.. he woke up at 1.30am and got into our bed do my back has been up and fiwn today. But a hot bath helped! I've found Waterloo Road on iplayer from the start so watching that once DS in bed. Going pumpkin picking with school friends tomorrow but not much else planned for half term.