Primary School Auties 11: 2023 is here

[openupmyeagereyes]

Thread 11.

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
Thread 10
www.mumsnet.com/talk/special_needs/4592899-primary-school-auties-10-summer-and-beyond-2022?page=1

Jules he did in the end; we were about half an hour late. I hope you dd has a better day today.

I watched the second episode of the CP series last night and loved it. I was really interested to see how much they had both come on since being diagnosed at 4. Good to see Luke Beardon too. It would be great if they could commission more episodes.

We gave ds the 3mg of melatonin last night and he woke at…. 4am! He’s been waking at 3:30-4 for the last 4 days so no change really but we’ll stick with it and see what happens. I have so say, part of me was hoping he’d sleep until 6am 🤣

I had a conversation with dh about the effectiveness of 2 separate tablets dissolving together vs one 3mg tablet.

liv what dose of melatonin does ds take? I think he takes it but can’t quite remember.

We had two nights this week where DD slept through - like, really through (12 hours...). When I woke up I freaked out if she was OK! FOr me thought it does show that she doesn't only need a short sleep (like some coaches etc have suggested) but does need more

Last couple nights terrible again though. I'm thinking the nights she slept well she had a big meltdown before bedtime - almost like she got a meltodwn out her system so didn't need to have one in the night. Tbh it feels pretty random with her

Ah that's so rubbish @dimples76 re the therapist - we've had a few personnel changes that have been really crap but I can imagine for you and DS that's a much bigger one with that real expert experience. Really hope you find a good solution.

No big news here, have a meeting with DD's school next week to discuss how the first few months have gone. The pre read report was in line with what I expected, think they have a good sense of what she's like by now. The report did emphasize that we we have busy jobs in the 'home and family' section which to be honest felt a little bit like a judgment of sorts but I guess it's also just stating a fact.

Going to watch the documentary this weekend.

Ahna I hope the meeting is positive. Great they’ve issued a report ahead of it so you shouldn’t get any surprises.

Just a quickie as it’s a manic week with work so will read up on the thread properly later.

Open, re the 3mg do you have a 2 and a 1? It’s a bit trial and error we found. We actually now stagger them so give the 2 first then the 1 perhaps 45 mins later, in my head it keeps it in his system longer but who knows. It is the slow release?

Ahna hope the meeting goes well! That’s great re the good nights you have had and shows she can do it!

it’s been a bit of a disappointing week here. DS had a really good week over half term so I felt very positive when he returned. However his teacher hasn’t been there all week and things have been all over the place. I’d assume if she was leaving she would have had to have given notice and someone else found so can only assume she’s unwell. It seems inappropriate to ask. Unfortunately she’s integral to DS though and is the one who seems to really understand him and gets the most out of him so I’m really hoping she will be back next week.

carrie yes we have a 2mg and 1mg. I will try giving the 1mg later. They are both prolonged release but different brands.

I hope ds’ teacher is back next week and things are more settled for him.

And I assume he’s not crunching them?

thanks, me too. I feel he’s just been babysat this week from the feedback.

No, he doesn’t crunch them.

I have staggered the melatonin as suggested. I think it’s interesting that 3 of us on this thread find melatonin alone doesn’t work when for so many others it works wonders.

For us it did for a while… but then for whatever reason it stopped doing. Almost like his body had got used to it and was overriding it. Funnily I’ve found this with other things with him, initially it’s been great but then the benefits seem to wear off.

carrie I think that’s not uncommon.

Open he was taking 2mg, we used to crush it and put it in his milk. He hasn't taken any for a couple of months now though.

How annoying about the therapy dimples.

Those nights of sleep must have felt amazing Ahna.

Sorry it's not been a great week Carrie.

We had another week where ds decided not to go to school for the day. He said 'he wanted to watch tv and would go in tomorrow' which I guess is kind of progress in explanation but also frustrating as that's not really a reason for missing school. Also we take away screens when he's not in so not like he was going to watch tv anyway. His teacher is going to get the pastoral team involved to see if they can get to the bottom of it.

I also really enjoyed the Chris packham documentary, I hope they can do more episodes as it's wonderful to see the visual expressions of internal feelings.
Carrie I get where you are coming from about the non-verbal episode. I remember finding it very difficult when ds lost his language and I couldn't reconcile how he was with a lot of the depictions of non-verbal children and adults.

Aw bless him Liv, you kind of understand that about not wanting to go to school and do something preferable, don’t you. We all do. Have you found any difference since he’s not been taking the melatonin? My only experience was the eeg fiasco recently where we didn’t give it and he was bright as a button at 12.30. Just not tiring. If that is how it would be it would kill us off 🙄.

Changing subject slightly but still on subject of false assumptions esp around someone being non verbal, did anyone watch that programme this week about the amateur pianists who were invited to play in Leeds train station but were watched secretly by Mika and Lang Lang. The little girl who was non verbal with apparent severe LD but who could play to the level of a concert pianist even though she was blind also? It was amazing and showed just what a mystery the human mind really is.

Hi all, will read back properly soon.
Just chatting to DS at bedtime and he started talking about his old mainstream school. He remembers so much. He told me tonight that they would take away his choice time and garden time if he was 'naughty'...man, he was 4 undiagnosed autistic at the time and off his tree with anxiety. Obv taking away his regulation strategies made his behaviour worse.
It got me thinking though about how most mainstream schools start from the point of view that children are in control of their behaviour and are making a choice to behave poorly. Even with very young sen kids. I mean, imagine a world where adult mainstream educators started from the point of view of looking beyond the behaviour to see the child struggling underneath. To remember that they are just children. Thr lack of empathy is shocking, I think. DS finally likes himself now, but it's taken years, and he shouldn't have had to go.through that at that awful ms school.

Ds has been awake since 2:20, ffs.

Uno your poor ds. It is shocking and very sad. Kids (probably mostly boys) in y1 being kept in at break time for misbehaviour or not finishing work, when in reality they are just too young for school, SEN or not. Our whole system needs to change and be brought in line with a Scandinavian approach IMO. They need outside time, not desk time.

liv ds says similar when he doesn’t want to go in.

carrie that programme sounds great. It is fascinating.

Carrie yes I totally get it, I think we all feel the same some days. Just frustrating when I know that he makes so much progress when he goes to school.
With the melatonin, he has some nights where he finds it hard to go to sleep and we do offer it to him but mostly he seems to be able to get to sleep on his own now.
I saw a bit of that it was amazing!

Uno it's awful isn't it. I dread to think what ds remembers about mainstream and more generally how we looked after him when he was younger and had no idea what we were doing.

Oh no open! Do you ever get to nap in the day if he wakes super early? Interesting that he says the same thing as my ds.

Oh no Open! I can only think…

1. try the 3 longer perhaps adjusting time you give it
2. ask for higher dose
3. ask for something additional

carrie what do you mean by try the 3 longer?

liv dh got up and took over while I went back to bed for a couple of hours.

Sorry I just meant keep trying for a while, keep giving him the 3 mg for a few weeks and see if anything changes/ gets better before looking to do anything more/ different.

Ah, yes. That’s all we can do for now. Thanks.

Was last night any better Open?

Uno your DS is very articulate to explain all that to you, I know you say he’s no issues around things like toileting etc. from experience I think if a child presents like mine… non verbal, issues around toilet, very hyper they probably get a more sympathetic ear around behavioural issues (from school.) The more typically they present in terms of intellectual ability, language, self care skills and so on the less schools IMO will be sympathetic to behavioural issues. There’s a lad at DDs school who does have an autism diagnosis but is very verbal, articulate, no self care issues and so on but frequently acts out, for want of a better description. He is just then excluded for a week or longer because of his ‘behaviour’ on the basis he should know better. Ridiculous of course but that’s how I think a lot of ms and possibly nt people also see it.

4:15 today, so much better than yesterday but not great.

carrie you only have to read threads on MN to see how scathing people are of even typical kid behaviour - everyone’s kids but theirs are annoying and ‘no SEN’. Like they’d know for sure. They are so judgemental. I’m pretty sure I’d have been the same if I had not ended up on a different path. I thought I’d be the kind but firm/strict parent and my kids would be well behaved

Sorry to hear it was still early. I felt like yesterday was my fault in part with my staggering advice.

Ha, even with DD I used to get really frustrated with her behaviour 🤣. I still do, I put it down to probably not being a natural mum. I remember saying how mortified and embarrassed I was about her (to DH) when she was 2. I’ve never really cracked the patient mum thing. I’m not a natural at all.