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

Thanks for your kind words open. Sorry, yes I forgot you can get melatonin liquid!! Yes that must be easier!

Danni do you find his behaviour in the day calmer with the meds? Or better in any way? I mean with you guys, on a weekend etc?

Good luck for bedtimes all round. DD and DS currently fighting on a gym ball (don’t ask). I’m zoning both out and waiting for strictly results!

Hmmm wonder if I can give him one of those boots pills before school?? 🤣🤣🤣🤣🤣🤣

Good luck with sleep tonight and school tomorrow.

We went to a Winter Wonderland today. I know, rather early to be seeing Father Christmas but it was a special relaxed day for SN. DS was an absolute delight, it was so lovely seeing him having fun with his sister and cousins. I was a bit worried at the start of the day as when we were waiting outside the Elves workshop they told us when we went in we needed to shout loudly to wake up the elf - thought this was bit odd given NAS presence etc! I was so proud of DS - he told me he would not like the shouting so we asked to wait outdoors until after the shouting. He has got better at recognising his needs and communicating. I think that the new sensory diet, OT has written for us is helping with emotional regulation a lot. Fingers crossed this continues!

dimples that sounds like a lovely day out, I'm so glad that ds and dd were able to enjoy it.

We had a better night thanks, he woke about 5:10. I hope you had a better one too danni.

Ds went into school today though he was initially reluctant and spent at least five minutes trying to pull me away outside the door. He didn't do any work again though.

That’s a lovely update dimples, well done DS!! Hope DD is feeling better now.

Not long to go open before the new school, I think it’s really exciting times for him.

DS seemed fine for drop off but then he always does. It’s what happens after that. My stomachs in knots already and there’s 2 hours to go.

Re is the ehcp (draft) is with the school to be agreed. Then we can consult. I’m happy with it. It’s been with the school 1.5 weeks , we haven’t heard a thing. Saw the head today and asked what was happening, said the ball was in their court. He said the PT senco has been off sick and he can’t access it himself.

Re us not is that should have read. I could move a mountain quicker than getting that bloody 10 page document agreed.

carrie I hope ds’ day went ok.
Re. the EHCP. Who updates the document? The SENCO does ours so by definition agrees with the version she sends out. I then give any amendments I want, which are generally agreed, and she sends to the LA.

Thanks open, mum collected him and just took him so no comments. No the EHCP has been convoluted, we had the original plan. We amended original plan and sent to LA who sent to school. School wouldn’t agree it and redrafted it. We didn’t agree with their redraft. We worked through it with LA and amended… that version has now gone to school . Hopefully they will agree it so we can move forward.

They (school) wouldn’t accept any of the cognitive things we said about DS and just wanted all the crap in which is why it’s gone round the houses cos we wouldn’t accept that.

Sometimes I really don't understand 'professionals'. From everything you've said Carrie the school clearly don't want ds there, so why on earth are they fighting the LA (who are usually more difficult to convince£ and holding up you chance to move your child to a better provision for him?!? The mind boggles.

Sorry I've been a bit quiet recently, it's been very mad here. Funnily enough the children being the least stressful thing! In any case we're moving house in a few weeks, which is exciting and stressful at the same time. Thankfully staying within borough so no changes to schools.

Sorry you're still having trouble with the meds danni. It does sound like a bit of trial and error. It does sound as if giving him a break on the weekend might be helpful for you.

Winter wonderland sounds great dimples and brilliant ds was able to articulate what he needs.

When does ds move to the new school open? Does he have some settling in days?

Hope everyone else is ok.

I think ds is going to have to switch meds again, back to the old one. I have to ring CAMHS Monday to give them an update so I may have to ask to go back to the 3 a day.

I’ve had his teacher phone at lunch he said ds has been wild today and yesterday, like he’s completely unmedicated. Back to behaviours they had before he had medication 😣 he’s back to 2-1 support and he said they are really struggling with him. He’s undressing and wants to be naked so refusing to let them dress him again and rolling around with no clothes on with everything on show, he’s hitting children with sticks that come near him at lunch chasing them across the playground to get them with the sticks so setting all the class off so he’s had to he taken inside, ramming his work - full pieces of paper in his mouth and chewing them up and swallowing them, purposely making himself sick, weeing all over the classroom again, eating all the sensory dried rice, manically laughing and his teacher said he cannot heard a word we are saying to him. That’s just today.

Those behaviours are what they had every day when he first started, so school feel like he has gone 10 steps backwards.

He said today ds adhd is really severe (we know!) he’s not capable of learning or behaving at all when he’s not medicated.

Fuck sake.

His teacher is going to email me on Friday with an end of the week update, then I can use that information for CAMHS Monday morning.

Hopefully there will be no issues swapping back.

He does that with his drawings here, just scrunches it up into a ball rams the full things in his mouth, won’t spit it out and chews it up and swallows it all.

Don’t honestly know what goes on in his head 🤦🏻‍♀️🤣

Kicking myself now for getting the once a day. Just thought it would be easier to have one a day dose and not have to worry about school struggling to get a dose in him with him refusing to take his smoothie there, bcos I was having to do his lunch dose late when he got home and school were going to start giving it as he can’t keep having it late, but I knew they’d more than likely have problems getting it down him there. If for instance they don’t mix it exactly as I do as the white powder clings to the cup and it needs thoroughly mixing and ds see it he would refuse and then refuse it at home. Or they said here ds your medication. It’s not medication it’s ‘smoothie’ if you say it’s medication he wouldn’t touch it again. Just one little error he won’t accept it again. So it’s been stressing me them giving it.

So when I mentioned my concerns to the dr (as he was wondering why ds is having his lunch dose late when he’d asked me regarding timings) I explained, and he said we could try once a day and I said yes straight away..

Wish I’d just left alone and let school try before swapping things about.

It’s not your fault Danni, like liv said it’s trial and error, you have tried it for all the eminently sensible reasons you have just said and it hasn’t worked out so now you know and can go back. I can’t see the dr having any issue with that, bet he sees it all the time.

Just stick at it, he will get there. It’s just teething problems at the minute. School should know how to mix a few granules though, it’s in their interests to get it right!! Don’t they have this for any other child given how common adhd is?!! You are hardly asking them to knock up a Michelin starred meal are you 🙄

danni sorry this is such a nightmare for you. I hope you can get the meds switched back again asap.

We had our home visit from the new school today. Ds didn't stay for much of it and didn't say a lot but it was informative anyway. I think that someone will go and see him in school in December, after that we don't have any settling sessions until January. Before she came ds was saying that he doesn't want to go to the new school, that he likes his current school

What a nightmare Danni but as the others said I think your reasons were very sensible and it was worth a try. Hopefully they can try something different (or at least go back to the previous dose/drug - but hopefully they can find a better combination than that?)

All fine here! DD and DS both having some problems with other kids at school which makes me a bit sad - I went through that for most of primary school and although it was nothing really severe it was a bit miserable. I had hoped to avoid that for them. But anyway, I'm probably being too miserable about it. Teachers seem responsive so far so I'm hoping they'll find a good way to intervene (although when I mentioned the boys involved to another Mum who's been at the school longer it seems they have real form so that's less encouraging...)

I'm glad you've got the new school confirmed open. It must be worrying for DS to say he doesn't want to go but any change is worrying - I bet he'll settle in pretty quickly once he's there and hopefully find it a more engaging and easier environment all round.

Oh dear open, just what you need to hear from ds. I wonder if the new school will be tolerant? Ds school often send newsletters reminding parents of their legal obligation to make sure their dc attend school regularly, hypocrisy really when I send ds every day and they only let him attend part time.

I know there is one child in ds class (the one who hits ds a lot) she frequently has days off school, ds mentions it and his teacher has when he’s been telling me that ds has been in the main class and I say oh I thought x wasn’t allowed around x and he’s responded with, oh x is off, great! Ds seems to only be allowed into the main class when x is off I’m not sure whether she is a school refuser but she is off at least weekly. I do hope all this eventually settles down for you with ds and school refusing. If it’s anything like my own experience (although not with school refusing, I mean behaviours in general) it is going to get worse before it gets better. Although I’m still waiting for things to get better admittedly 😅 but I don’t think that’s usual.

Light I’m sorry your dc’s are having difficulties with other children.

Ds teacher sent me an email last night, pretty much same as when i posted the other day. He’s had a v bad week. I won’t be expecting pupil of the week award to come home with ds today anyway

I’m ringing camhs this morning when he’s gone to school, me and Dh prefer ds unmedicated (less volatile and mood swingish) school much prefer ds on old medication.

Yesterday they were very short staffed and ds didn’t have a 1-1 (hmm. Then I get a complaint about behaviour?) he had to go into the main class with 9 other children and their ordinary class ratio which is 4 adults to 10 kids. Well it was a shit show as you can imagine. That to me, is not ds fault nor his problem. So I’m ignoring yesterdays run down. But mon-weds has been pretty horrific behaviour wise in school. He’s done next to no work and has by all accounts spend this week outside.

Will update when I’ve phoned camhs.

Sorry he's a bit anxious about the move open. Hopefully when he does the settling in days he will feel more comfortable with the idea of moving. Has he visited the school at all? When we visited ds's new school with him for the first time I think he thought all his Christmases had come at once. He loved the sensory room and soft play so much we almost couldn't leave!

Light I'm sorry your kids are having problems with the other children. It's so difficult to hear about things happening when you're not there. Glad the teachers seem to be on it.

Danni the cheek of them to complain about behaviour when ds was clearly lacking support! Hope the Camhs call goes ok.

Ds had a bad start to the week but seems to have pulled it out of the bag today. Mondays are always such a nightmare.

Shit show too here. Your comments re being off made me think Danni. So the situation we have is absolute negativity every day after school/ in emails from teachers about him. Revolving around the fact he is now biting/ pinching his one to one every time she is trying to get him to do anything and how appalled they are at this, talking about him horribly etc etc. Honestly on my daughters life the class teacher has not ever said one nice, kind, positive or productive thing about him. If I say anything positive or nice about him he just argues with me in my face about it and contradicts me.

DS did this behaviour a bit at nursery and I’m just so upset this behaviour has come back as it had completely stopped, I felt it was a behaviour of the past that he had moved on developmentally. It kills me that his behaviour and development seems to progress then regress.

I’m a person who is never ill but this week I’ve felt terrible with various things. So last week I just kept him here and after another barrage last night from them on pick up as I’m not working today he’s here with me again. I just absolutely cannot face it before the weekend. I’ve actually been thinking about just packing a bag for him and leaving with him, the only thing stopping me is DD. I appreciate this is not sane thinking so the best I can do at the mo is not send him.

I wonder why the kids at his school are not going in Danni, the girl? Is it refusal or because parents don’t send them for my reasons? I wouldn’t have expected the latter at a SS??

Do you think I should just be thinking they can suck it up and send him? Too late for today but generally…

SENCO emailed and said they were looking to buy ‘protective clothing’ for the one to one. I mean Christ on a bike… he’s 6, tiny, wearing an age 3 coat currently, he’s one tooth missing snd one hanging out, he can’t even bite an apple at the moment. His fine motor are underdeveloped he has trouble with hand strength holding a pen ffs. I’ve cut his fingernails to the quick. Is protective clothing really necessary ffs? He’s not a dog?

I just cried when I read that. Appreciate I am a complete loon at the moment so do feel free to tell me that!

Protective clothing? 🤣 ask them where they are buying it from and I’ll get myself some to wear at home. 😆

When covid was at its height, ds old school 1-1’s wore masks / visors / aprons and one took it too far and was wearing goggles, there old swimming pool was directly opposite and I said one morning, are you going for a swim?, all this is because ds was spitting on the floor at the time, the normal teachers didn’t wear it, just ds staff. I posted on here about it at the time. They used to come collect ds from a separate gate dressed like that and all the parents used to stare as there children were collected by a teacher from there door in normal clothing. So over the top!

What kind of protective clothing are they talking about ? Sorry that’s made me laugh.

Liv im pleased the rest of the week has been easier for you.

Oh that made me laugh Danni, swimming 🤣🤣🤣🤣. Apparently some ‘arm protectors’… god knows I have visions of something similar to the blood pressure monitor but in resilient material covering her full arms?? Who the hell knows. I’ll let you have the website details…. 🤣🤣🤣