Primary school auties step into Christmas and the New Year - thread 8

[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

Thread 7 -
www.mumsnet.com/Talk/special_needs/4303826-Primary-school-auties-summer-and-the-new-academic-year-thread-7

It's partly box ticking but the social worker is so kind and supportive it's always good to talk to her. In terms of the professionals I have met whilst adopting and getting support for DS she is v unusual as she is kind and compassionate but also ruthlessly efficient. I want her to train everyone else!

I’m getting definite vibes ds school are on the verge of saying they can’t meet his needs! 😒

I’ve just had his teacher phone and say that ds has had his worst week with them and they aren’t sure what to do now and they’ve exhausted all available options.

He’s asked me to book in with CAMHS (he has an appointment next month anyway) and ask for a medication review / increase. I just said it doesn’t want to go up, it needs to come down! (In my non professional opinion.) He disagreed, but I said look back to the 2 weeks after Xmas ds was in school were you said he had been having fab days. That was on the old dose. Then look at the last 3 weeks were I’m having phone calls and emails galore, he’s been on an increased dose! So why do we want anymore?! He said he had good days but still really hyper and heightened and at a tipping point. (I don’t feel I can win, regardless!)

Also he said ds 12 o clock medication isn’t dissolving in his juice and it’s powder at the bottom so he’s missing some of it. (I don’t have that issue at home putting it in a smoothie) but of course ds won’t drink smoothie at school ffs.

His teacher is going to give him another month or so and record everything and have another discussion with me after that and see we’re we are at. He wants me to ring CAMHS in the meantime and do what I don’t know.

Grrrr

I’m just going to give ds 5mg, not 10mg in a morning next week. All week. Not telling his school either as they said not too! - hence why I didn’t do it last week after I mentioned it on here. (They think it needs INCREASING not decreasing) but I don’t agree.

Just need to see if it’s because 10mg is too much for him.

So I’ll do my trial next week and ask for an end of week update then see what happens and it will answer my question won’t it.

Isn’t it never ending?!

And I’m going to ring CAMHS at some point (they don’t just magic spare appointments up out of thin air though, really they don’t!) but I want to ring them after I’ve done my trial next week to give them a clearer idea.

Not sure what to do next. Maybe trial something else if decreasing doesn’t work next week. But I don’t think increasing is the answer.

Trialing others though is tricky, ds has to have it disguised. He won’t take a tablet, wont drink anything if he knows it’s in it. Has to be crushed and disguised. So rules a lot out and there isn’t that many to begin with!

Danni I really don't think it's the school's place to be commenting on how much medication ds should take! They are not doctors. Also they are putting you in an awkward and uncomfortable position when they should be helping you. Where could you send him if his needs can't be met there?

Open ds for signed off from the paediatrician as soon as he was diagnosed. However I got a call from our gp when his repeat was due saying the we should have been under the pead this whole time (news to me!). Anyway she referred us about 2 months ago and I've heard nothing. I don't really mind as long as they don't take away the melatonin cause life is not worth living without it!

I'm glad you got through your appointment dimples!

Big hugs (and gin!) to everyone with covid etc.
@danni0509 that sounds very odd of school to be advising you on medication levels!
@openupmyeagereyes glad your DS is still liking school, it's a process isn't it.
We are eagerly awaiting the food shopping delivery (a highlight of the week!) and have an autism friendly cinema screening planned for the weekend.

DS also signed off for paed as soon as diagnosed here too.

danni that all sounds very stressful. I would try the 5mg next week and see how it goes. Does he have 5mg lunchtime?

liv hope you’re doing ok. We were lucky (???) that ds’ sleep went to pot between the time he was diagnosed - just after actually - and our review 6 months later, so the paed was able to put on his shared care notes that gp could prescribe the melatonin. But GP just being a bit strict with it. Hopefully at some point it becomes available OTC here, it will save a lot of bother and cost to the NHS.

We’ve been in to school all week but just at lunchtimes. He’s still quite against staying for anything other than playtime . Next week I’m hoping we can get into a couple of different things, like forest school. I need to email the ahead teacher.

I have to say, it’s been quite eye opening being there. I’m trying hard not to jump to conclusions as I know it’s early days for kids and staff and we need to give it a proper chance. Also, it’s lunch only. That’s if we can get him there for any decent length of time.

Fortunately DD tested negative yesterday and today so we are free.. sort of as she is still under the weather. It does mean that I can do the school run which makes DS much calmer.

Magrat the delivery of the weekly food shop is a source of great excitement in this house too.

Danni hope that you can get medication improved - as a complete non-expert it does sound like it needs to be a different drug. I think that your plan sounds sensible.

Are you not feeling optimistic about the new school Open?

dimples I think there's a few conflicting thoughts in my head. Firstly, there's probably me needing to come to terms with what a special needs school looks like. It's a school full of autistic kids, therefore at any one time there's likely to be at least one kicking off about something and that is what I've seen in the short periods I've been there. At the moment at least, and I appreciate that it may only be an issue for the present and not the long term, there's a child in ds' class and one in the class next door that need significant support with behaviour and or emotions. This means that one adult is largely taken up with them meaning fewer adults being available for the remaining children (they do not have 1:1's). And in my ds' case, available to help him integrate into the classroom. That leads to the other issue, that I feel they are not being proactive enough regarding helping ds settle in. Possibly they feel awkward because I'm there, or maybe they just don't have the bandwidth given everything else that is going on. I don't know, but I don't feel they are doing enough to engage him in the classroom. Alongside this, there's a few routine things that seem a bit unclear - where does ds, who won't sit in the lunch hall at lunchtime go, especially if one of his classmates is kicking off in the classroom? On Wednesday afternoons another staff member takes the class for the afternoon. PE is on the timetable. I heard them discussing it and the teacher said that they'd had a decent time outside and they decided not do do PE and they organised some emotion coaching stuff instead. This unplanned change in the timetable seemed bonkers to me in a school where routine surely is king? If I'd arranged to bring ds in with him expecting to do PE I'd not have been impressed. I need to formulate my thoughts in a measured way and put them in an email to discuss with the head.

Sorry, that was a bit of a brain dump, I'm cooking at the same time. I'm doing my best to keep and open mind and not jump too quickly to conclusions.

Open it wasn't at all. I guess it is particularly challenging because all the kids are settling in and the staff are just learning to work with each other and getting to know all the children. It must be exhausting for everyone but that does not help your DS.

My DS would be v upset if there was a deviation from the timetable especially if PE was missed - he might cope better if history was changed to PE! DS struggles most with history and geography, history was always my favourite subject at school so I struggle with that! Whenever I try to talk about anything historical his eyes glaze over.

Are you meeting the head soon?

Interesting @openupmyeagereyes. In my DS' school, I think they sometimes dont get too up in his face trying to welcome him in etc as they know he doesn't like it, so maybe that's why they're taking a step back, like my DS would perceive them being too overly welcoming as a demand. They don't have 121 either but have told me DS basically has 121 support a lot of the time, like some of the others, but they do it very cleverly so the kids get used to all the adults in the room and don't become too dependent on one adult. They try not to place demands too much etc.
The school were very responsive too. They noticed that DS was becoming overwhelmed and suggested changing his timetable to incorporate more of his choice of activity. He now has a bespoke timetable but is with the main class. We go through his visual timetable every morning. Sometimes things do change however and part of their job is to equip our kids in how to deal with that as they get older I guess. It's hard for them though, I agree.

dimples that's exactly the case and why I'm trying to keep an open mind. I think they hope that the behaviours reduce as the kids get used to the school and the routine. Lots of the kids have been out of school for a while or by themselves with a TA, like ds.

Magrat I totally get that. At the moment though, I'm the one trying to persuade ds to stay and I think that they should be taking the lead there. Possibly they're unclear how I want to approach it so hopefully I can speak to the head asap to try and agree a strategy.

Oh, and they've had 2-3 kids off all this week so theoretically it should be easier for them. It was nice to see his smiling face out in the playground though

I think also open it’s a massive shock seeing a specialist school in full swing, especially if you’ve had a stint in mainstream.

I don’t think many see what it’s like, even parents of children attending specialist schools, they usually get transport so the parents don’t attend.

I took my ds for 2 weeks to begin with and I was a bit er, shall we say, suprised.

I’m not sure what I was expecting to be honest, but it wasn’t what I see!

I’m that used to my own ds and don’t know any other children like ds, yet ds is totally normal to me. I don’t know him any different. I’m just not used to seeing other children the same or similar so it made me think what the fuck have I enrolled him in.

I mean it in a nicer way than it sounds, you know I’m not so great explaining my thoughts so they don’t sound like I’m being an arsehole! 🤣

I don't know what I was expecting either danni, that's probably part of the problem. I think if ds told me that he was scared or didn't feel safe at school I would totally understand why. But then, equally, I know what ds can be like when he's stressed and how guilty I felt when he hit and kicked his TA that morning last term, how he can be with us. I am sure that sometimes the children in his ms class might have been scared of his behaviour. It's so hard.

I agree that many parents probably don't know a lot about what happens, especially if the children are not able to verbalise properly what's been going on. Ds is very verbal but we get almost no feedback from him.

Ds has been awake since 2.40 so I'm hoping for a better night tonight! He's just gone to sleep.

Maybe if they are in an environment where they are learning and progressing it’s best not to know the rest. Is what you are seeing his cohort Open? The SS that has offered DS a place for Sep claim they group children so that they are in a group of 10 ‘like them.’ There is I’m sure such diversity in any SS you would imagine it’s hard to teach them any other way.

There’s a school that caters for children with very severe needs (including severe physical needs) and that was an eye opener for me. But I also looked around a general SS and unless I was there on a good day it would have passed for MS! There were some teenage boys rioting but that looked fairly typical and a little girl chatted to me about baking a cake. I would not have said she had SEN. There was also a gorgeous 5 year old who was doing the toilet dance and I thought DS wouldn’t do that he would wet his pants! I noted when the TA took her to the toilet she waited outside for her which I thought was quite advanced for her age. So that could have for me passed as MS pretty much?!

Who knows!

Yes ds is very verbal too open and I think that’s were people make assumptions, they can speak well so people assume they can’t be that affected. Nothing like as simple!

It’s ok having words but it’s using them isn’t it. Ds can say any word in the world, he can use long sentences, but we get no feedback, no important information, no explanations, no talking about why he has done what he’s done or feels the way he feels, he genuinely doesn’t know how to answer a lot you ask him. He just says stop asking me (that’s his answer when he isn’t sure what to say)

So his speech is fab but the way in which he uses it is not so fab! Which is why ds has been diagnosed with a language disorder.

I imagine to the passer by ds in the waiting room for a SALT session, they would think, what’s this kid doing here?

I for a long time thought speech was about words they could say, it’s really not !!

Ds is still awake, he’s really not wanting to go to sleep tonight.

carrie I’m only there at lunch time so I’ve no idea if they are learning. I do know that the little boy who has massive emotional struggles couldn’t stay in the classroom very long at all in the beginning. Now he does but not without issue, so that’s progress but I don’t know if he’s happy about it. I think the others too, are doing well considering their challenges. Except for ds of course who just refuses to stay, and if he was forced would probably have a meltdown that would need to be managed which is not what I want.

danni I don’t know but I’m pretty sure ds could tell us plenty but for some reason it makes him very uncomfortable. I guess it’s an autism thing? It makes me worry about what else he might not tell us that is important. I also worry that it’s my fault and somehow I’ve made him scared to tell us. But as you say, even simple stuff he often refuses to discuss too.

I just wanted to clarify, in case it didn't seem like it, that I do not blame the children for their behaviours or difficulties. They are all there because they have struggled in mainstream for various reasons. None of the kids are crying at the door because they don't want to be there either, they are getting upset (to varying degrees) about incidents that happen with other children in the classroom or in the playground, nothing out of the ordinary, but obviously their reactions are sometimes amplified.

I was worried I seemed disapproving, which I'm not. I just wonder if they have enough staff, though the teacher said they were going to get an additional TA for half a day which would help. Dh thinks it's helpful for ds to see the other kid's behaviour because it will let him see that he's not the only one that struggles sometimes. He's right there I think.