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

Hi everyone! Sorry I've been a bit quiet, started a new job so been busy busy!!
Re schools, the school now just has a totally different approach to education, setting the phonics and maths within a context of lots of sensory play and life skills with a huge focus on emotional development and communication. They have a very set timetable that the children know about in advance, lots of sensory breaks, softplay, phonics or maths each day not both, topic works that follows through so not constantly changing, cooking, lots of games to practice social skills, attention autism, yoga, rebound therapy etc. DS is also now having pronunciation therapy with a salt to focus on some of his sounds. All happening as part of his individualised plan. Much smaller classes, much less overwhelm, weighted blankets available, forest school sessions. The big difference for DS us that he doesn't always feel different, like an add on to the main class. The kids in his class are like him. It's made a big difference to his self esteem.

Magrat that sounds great, I would hope that the school we are looking at for ds would be similar.

dimples I'm sorry things all seem to be going wrong at the moment. ds may well have picked up on it. So frustrating re. the EHCP and the therapy being offered but not really accessible. So many of these professionals only seem to work during school hours and term times which is not particularly helpful. I hope that things turn the tide soon

We had a very tricky walk yesterday afternoon and today at school ds was a bit unsettled. He's been fine since I picked him up though and we stayed at home this afternoon after a visit to the library and the park on the way home. He's mostly not going to sleep until about 8:30 now so the day is a bit longer...

I got an email from our council today, ds blue badge renewal they had to discuss it at a multi disciplinary team assessment with social care workers from the disability team and access his medical records to verify what I wrote on the form and find out some additional information about how his disability affects him - no idea why as 3 years ago they didn’t do this and that was 2 years before the hidden disability rule came in, (they did ask me previously for permission to access his records which I said was fine) anyway it’s been granted for another 3 years and it’s now in the post so thats another thing ticked off my list.

I’ve got his annual review Friday via zoom. They have invited his autism consultant & child psychologist, I know the child psychologist is attending as she phoned me to let me know. No idea about his consultant, I only speak to her once a year! I’ve never had that before with his old school, the last few I’ve done it’s literally been me and the senco.

I hope that's useful @danni0509 - presumably you haven't had one at this school yet either? Lovely that DS made a friend to play worms with (DD would love that too! I had to rescue a worm on her behalf on the way to school this morning...) That thing about losing the "surprise" seems annoying and also just weird for a SEN school: surely lots of autistic people hate surprises, so using it as a generic reward seems like shooting yourself in the foot really?

And sorry that things are hard @dimples76. Good you have gone through the appeal process before at least and know what you are doing, but frustrating if you have to. We also found that appointments/services are never really at doable times. Is the therapy a one-off or would it be regular?

All fine here. DC settling into new school. Super-tired, quite raggedy behaviour on the bus (we now have a commute) but OK really. DS (4) will tell me basically nothing about what he has done, what he has eaten, who he has played with. DD is much happier to tell me and says she loves everything (even PE!)

Though we are having problems with her PE shoes. They go in wearing PE kit twice a week. First week was OK but she was complaining a bit about her new trainers in the mornings (at the end of the day said they'd been fine). They were quite stiff so I thought she just needed to soften them up a bit.

Second week had meltdowns both days, ended up walking around the streets in socks just to get to the school. Also started refusing her weekend trainers (which TBF are probably getting small). Ended up having to take her to our shoe shop on Friday morning to get her some new ones which were "so comfy ... it feels like I'm not even wearing shoes".

Now this week those new ones are also being uncomfy, to the extent that yesterday she did PE in school shoes (after last week's experience I've been sticking her school shoes in her bag every day even if we do manage to leave in trainers, which is not a given!).

I mean, maybe that's fine, but I don't think it's really just about shoes, so it does make me worry a bit that things may not be as great as she is saying they are. I think she enjoys it but it's also overwhelming, if you see what I mean. And she inherited being 100% not a morning person from me, so that probably doesn't help...

Anyway, I think it's pointless buying endless new pairs of school PE trainers, but I did think I might take her to get some new weekend trainers on Saturday. My local Mums group suggested Skechers is quiet if you go when they open and has lots of choice so maybe we'll brave it (though it's in a massive shopping centre which usually I would avoid like the plague ... and am I risking just making shoes even more of a thing if we go shopping again?) I'm thinking maybe if we find some sparkly ones that she really loves she'll get used to the feel of wearing trainers again, and then the school ones might feel OK?

We have already spent a ridiculous amount on trainers this month though (also bought a couple of pairs on line during the horror week which turned out to be too big...)

Anyway, there you go, welcome to my boring brain, obsessing about shoes.

Hope everyone else is doing well!

Light what a shame for your dd. Like you say, possibly the shoes are the top of the iceberg. Great that you’re aware of that.

Ds is having a big sensory issue with wetness at the moment. He’s fine swimming or in the bath and such but if he gets a drop of water on clothes he wants them off. He was getting better with this but it’s gone the other way again. Recently he’s been really disliking sweat on his body and wants to take his top off if it gets damp. Today when I picked him up he insisted on taking off his top and walking to the car topless. Think I will be googling for kids wicking base layers. This hasn’t been an issue until recently and I’m hoping autumn arriving will largely knock it into next year’s problem.

I had ds annual review. Went ok.

They changed a few of the smart targets, updated quite a lot of it as he’s in a different school now and parts were completely irrelevant. Ds consultant didn’t attend she just sent the latest report she did last year and his child psychologist attended but literally there was no point in her being there, nobody asked her anything she was just looking like erm why have you even invited me. Awkward as hell. I’ve since emailed her and thanked her but it really was awkward, she said at the beginning when they were reading things out, can I just butt in and say that ds has diagnosis’ of autism and adhd so a lot of this behaviour is completely expected and maybe phrase it in a more positive way as she felt it was mean how they were speaking of him. So ds class teacher was like I’m sorry but this is what you do in an annual review, needs need to be black and white, anyone who picks this document up needs to know exactly what it means for the child (I completely understand him and what he is saying is correct, but also completely understand her too, I just don’t think she’s done an annual review, it was in the what isn’t working well part so they were listing everything that isn’t working well) so I was just sat like oh dear, where do I even look 🤭 she’s literally just sticking up for ds and I was grateful but then at the same time the school were just literally doing what they needed to do..

Ds teacher said he’d spoken to the head and he has an OT assessment in October (school are paying for the initial assessment) then they are going to try and get my LA to pay for any direct therapy that the OT recommends. So that’s a positive.

Ds teacher thinks ds medication is having a positive impact, he said he’s had another good week barring a couple of incidents.

They did say during the review he is still on 1-1 support for the duration with 2-1 as and when needed / at various points and this will all continue to ensure ds and staff and pupils safety. Also they are starting back with outside school visits using the school minibus and that ds will need 2-1 for any outside activity.

I got the annual review notes that the school senco did this afternoon it says ds attendance is 62% then it asks if education welfare are involved (for attendance below 90%) shes ticked no, then it asks for a reason if NO and they’ve put ds is on reduced school timetable / attending part time.

Funny though if that was me sending ds in only 62% of the time then I would have EWO but when they are doing it, it’s ok?

The fuck.

It’s frustrating danni. Glad the annual review is done though.

Are you seeing any improvements at home yet from the meds?

Open, honestly I’m not noticing any difference. He’s just normal ds, I’m not buying it with school either, if he’s made such a miraculous recovery at school then why is he

a) STILL on reduced hours.
b) working full time out of the classroom (permanent arrangement judging by yesterday) they’ve wrote in his ehcp that ds requires his own room with his own dedicated staff.
c) the taxi driver tells me stories often, he’s ran away at home time bolted from all the staff and it’s been a wild goose chase or the staff have come out stressed etc etc. Then ds tells me things.

Ds is really stressing me out today, he’s really angry and tantrummy and it’s sending me over the edge, days like today I’m counting the minutes until bedtime, sat thinking it right now….

How’s ds with school the past week?

Why would school say he was better Danni if he wasn’t (just thinking aloud…). Odd if so!!??

Because Carrie I said if his medication isn’t working I’m taking him off it (not giving him something strong like that long term for no or not much difference in him) this is exactly what I said to his teacher and his school was like oh no don’t do that, so then they are now saying things like oh yeah much more positive (which I would be happy if was the case, just don’t believe it and feel like they are telling me that to keep him on medication) literally no one else can see any difference in him at all! Myself, dh, taxi / escort, my family etc etc.

And if it was more positive at school why do all the part time hours and him still working outside etc still stand?

Don’t overly trust them that’s all x

I know, I don’t trust them either. At all. Sounds terrible but once I realised DD had a positive pcr result for Covid and was actually not ill my first thought was thank Christ I can keep DS off for 10 days…

You may need to tweak the meds though, see what they say. If it’s any consolation DS being a little sod today too 🙂.

Hope everyone else’s wkend is going ok.

Dimples did DS get chicken pox? Hope you are over that now. Totally sympathise with work balance woes. X

Yes we have an appointment in 3 weeks for his 6 week meds review, he is only on a small dose so I’m sure it will work properly eventually when it’s upped / changed / whatever they do.

Is dd ok now?

This will give you all a good laugh re how bad DS’s school is. I said I wanted a meeting to discuss this years arrangements. Head grudgingly agreed and said senco would email me to sort. So senco did indeed email me. Let’s just say DD is called Jane. The heading was ‘meeting with Jane’. I was like, errr… well it’s not with either of my kids it’s ABOUT. And about DS, nothing to do with Jane. Senco taught Jane 2 years ago and knows she has no issues! The email then went on to say ‘let’s arrange the meeting to discuss Jane when she is back in school’. Err… not Jane ffs. DS. And really it doesn’t matter when she’s back. I have 2 kids, not 10 and even if I did can they not get the right child.

What irks me even more is they know DH and I are raging about everything. Now if I have a raging client at work which I do from time to time those are the emails, letters etc which I read a million times over before sending to ensure I’ve totally dotted my i s and crossed my t s and have everything totally spot on.

They are beyond belief…

Ps talking about jobs how’s the new one Magrat??

Dd is fine thank you danni. She was totally asymptomatic. Both back mon x (woo hoo 😡😡)

danni school has been ok but he’s spending a lot of time outside of the classroom doing other activities. We’re going to try 3 hours next week though I have said there’s no point pushing it beyond that until he’s spending most of his time doing meaningful activities or work, just being on the school premises is not the aim.

We went to a zoo today and though we did see some of the animals we spent most of the time in the adventure playground. It reminds me of when we went to an animal park on holiday when he was 3 and the entrance came straight into a soft play. I think we only got out of it once, very briefly the worst part was he was going through a period of hitting and snatching so we had to watch him like a hawk the whole time.

Hi all, yep I'm settling in I think, it's nice having a short walkable commute not ages on a train although it's quite odd as I went into town earlier and was convinced I light bump into someone from new work! I like to keep my life quite separate in different 'boxes' so this potential blending is a bit new and strange to me. The more I think about myself and how I was as a child, I'm pretty sure Im on the spectrum too. I do a lot of things that DS does minus the challenging behaviours as I just melted into the background at school, but I had lots of imaginary friends, I even did pretend discos in my room so I could practice how to chit Chat with people! I just dismissed it all as quirky but even now me and DH are quite quiet private people with small friendship groups and we struggle with how to act socially. A lot of those social skills are ones I've taught myself and social events always tire me out as I'm conscious of playing a part rather than being myself. It's hard to explain but it's like a bit of my brain is always saying 'oh look at you, saying that conversation filler' etc even when I'm talking to someone. The only people I don't get that with is DH, DS, and my parents. It's odd but not a bad feeling. I think I can see where DS is coming from though when he finds it so hard as he doesn't know what is socially expected of him at events like parties. 🤔

@openupmyeagereyes sounds v much like DS! Quick check of animals do he can tick them off his list then onto the ice cream cafe and adventure park! There's a place near us that has a sandpit at the start...DH and I took turns to look round the farm one time we went as DS refused to.leave the sandpit!

@danni0509 good luck with the medicine review. Is there a plan to integrate DS into classroom at all? Even a little bit would help his social skills wouldn't it but its hard to balance. Hope you're getting a bit of downtime this weekend.
Hi @carriebradshawwithlessshoes, that is rubbish re senco and names but I'm not surprised.
@dimples76 hope everyone is OK now!
Sorry if I've missed anyone!

Magrat it’s interesting isn’t it. I sort of came to the conclusion that I’m not autistic. I’m a little bit of a sensory seeker and a little socially inept but considering autism hasn’t been a lightbulb moment for me as my childhood was far from ideal and I think that plays a large part. Reading many of the posts on drspouse’s AIBU thread has made me think that’s probably correct.

goes to check out thread

Fails at MN as cannot find thread but got sidetracked for 30 mins instead!

www.mumsnet.com/Talk/am_i_being_unreasonable/a4309176-To-ask-what-its-like-to-be-neurodiverse?msgid=109547930#109547930