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Primary school auties: summer and beyond - thread 5

999 replies

openupmyeagereyes · 29/06/2020 11:18

This is the continuation of the thread for parents and carers of autistic children in Early Years and KS1. Most of us are parents of children in Reception or Year 1, but all welcome!

Here are the links to the previous 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

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Thread gallery
5
LottieBalloo · 17/12/2020 12:43

How are you feeling today @openupmyeagereyes

openupmyeagereyes · 17/12/2020 12:51

Lottie I’m feeling fine, thanks. A bit nervous though as it could all still go downhill. Wish I could fast forward the next week.

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LightTripper · 18/12/2020 15:11

Glad you are feeling OK so far @openupmyeagereyes. Fingers crossed for the next week. Maybe order yourself a pulse oximeter? They are only about £20 and could be reassuring if the cough does come back.

Just more Shock from Ds school @danni0509 (yet I suppose also not shock by this point). It's a complete scandal. I don't know what else to say.

We are on hols now. All good really. DD's Christmas show was filmed and she wouldn't be on camera herself (she's in the background of one shot lolling about on a chair - but she told us she joined in most of the time, just not on film - don't know!!). It was a puppet show so it didn't matter too much - but all the other kids appeared in the singing bit and at the beginning and end next to their puppets, and then for DD's bit it's just her puppet and she's hiding behind the stage thingy. But never mind, she did it her own way! I'm not too busy at work which means I may actually get my tax return in before Christmas, which would make me happy!

openupmyeagereyes · 18/12/2020 15:35

Thanks Light. I bought a pulse oximeter during the first lockdown so I’ve been using it every day and checking my temperature.

I’m glad dd managed to participate in her own way. We have ds’ dvd to watch - he never wants to see them.
I hope you can spend some time relaxing as well as doing taxes!

Still a bit nervous here waiting to see if dh, dm and dsd develop symptoms. Before the end of this week is most likely but it could drag on.

Typically ds is refusing to do any school work 🙄

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Mumofsend · 18/12/2020 19:12

I would reiterate private room only too @danni0509 we are on a "privates" mission here at the moment, she tried to poke her PE teacher's to "make it stand up like (DS's" Blush most awkward conversation of my life!

Thank goodness term is done, I am broken.

Got DSes ed psych report. Nothing is quantified at all Angry

openupmyeagereyes · 19/12/2020 17:15

Mumofsend I would ask them to revise it.

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Mumofsend · 19/12/2020 17:32

I'm going to. I've been speaking to a few people and it seems to be a common issue with preschool age ehcp's that provision is often poor until they start more formal school. She did a good job identifying needs but provision is shocking

danni0509 · 20/12/2020 09:50

Is that some of you in tier 4 now? I think liv or dimples are in London? I’m thinking liv, but can’t quite remember which. I hope it doesn’t affect you too much x

We are in Yorkshire and humber and have been in tier 3 for ages, literally don’t know what the rules are anymore, I give up about April time! We are socially isolated more often than not with ds anyway so doesn’t really make much difference to us. Just everything shut is annoying particularly soft play as we used to go with ds most weekends for something to do.

@Mumofsend that made me laugh about dd’s pe teacher 😂 sorry! They have zero understating of what is socially acceptable do they. I’m sorry about ds EP report that sounds too familiar, if it was written by a private EP it would be a very different read, how sad! Ds ehcp is a pile of shite, always has been. I haven’t had this one back after his annual review yet so I can get my highlighter out. I’m writing this time on the who it’s delivered by part - adequately trained teaching assistants / class teacher (ie not a pissing dinner lady!) they can’t tell me when he goes for 3 hours a day and she’s collecting him from me and bringing him back out to me that he’s having appropriately trained people during the 3 hours to give him an education and deliver his education plan, I know it’s just the dinner lady as she makes comments like he’s been spitting today he’s been really hyper today he’s been doing x y z today then I say to ds which adult did you have today he’s like (dinner lady) they’ve completely given up on him because they know he’s leaving, it’s a total joke.

I’ve been screen shotting tapestry anyway not that they put a lot on for ds but everytime they do he has his arm guards in full ppe either side of him and they are both dinner ladies so they can try deny it but I have quite a bit of proof.

Can you imagine the outrage if a dinner lady was educating a normal year 2 class? It’s completely unacceptable, just waiting for my meeting first week back........

I can’t wait for July as ds finishes the infant school, even if he does go across to the juniors for a period of time until SS has a place, at least it’s different staff / head, can’t be any worse than what’s going on now.

The private report school paid for in September (to get him out) is 11 pages of brutalness and recommends expensive provisions which incidentally the La / nhs type reports aren’t / don’t, what does it tell you?! You’d think Martin Lewis was writing the La / nhs type reports for them!

Open how are you feeling? Totally normal to worry! My aunty said she had a sense of impending doom waiting for things to go wrong! Hope this week passes v quickly and you can have a nice xmas.

danni0509 · 20/12/2020 09:53

To be fair on the part it’s delivered by it is class teacher / class TA’s anyway so I’m going to tighten that wording but they are already breaching it in more ways than one.

He’s supposed to do daily class activities with his peer group for his social development but he’s banned from the classroom and I know for a fine fact that doesn’t happen even on a monthly basis never mind a daily basis...

Mumofsend · 20/12/2020 10:24

We are tier 2 still!

@danni0509 it gets better as now we've explained those parts are private she has been smacking people on the bottom and going "those are your privates" and laughing to herself. She has understood the private part but not the implications of what that means!

DD's ed psych report was really good but the LA commissioned a private EP to do it. DS's is currently shocking but thats a battle for after Christmas!

It seems the only way to get a legal ehcp is through private reports

openupmyeagereyes · 20/12/2020 11:44

danni all ok so far. Day 7 today.

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danni0509 · 20/12/2020 14:53

Glad all is well so far open Flowers

Anyone else ever get stuck in a rabbit hole and go back through the old threads, I do it every year or so Grin just done it again now, ds is occupied playing with his aeroplanes so I’ve just spent an hour reading through the old threads. Right from thread 1.

Time really does fly, feels like yesterday I wrote some of those posts but it was nearly 3 years ago.

Onceuponatimethen · 20/12/2020 16:29

I often read back old posts I’ve put on mn sn threads!

Does anyone have any ideas about how to handle the change in Xmas plans? Dd now can’t see Nan and grandad. I’ve told her and understandably she was very upset. I just let her watch tv today but am dreading bedtime and tomorrow.

dimples76 · 20/12/2020 17:44

I'm in the North East we have been in tier 3/local lockdown/national lockdown since September. I am so glad that I didn't tell DS that my sister and BIL were coming for Christmas as they're stuck in Kent. I am gutted enough without dealing with DS's disappointment. Ordered a takeaway to cheer us up. It is 50 mins late and counting and I now have two hungry, grumpy children - some treat!

Onceuponatimethen · 20/12/2020 18:00

Oh no - hope it comes soon!!

Yes it’s so hard for all of us isn’t it - kids and adult.

We had to tell dd because she’s in juniors all the kids were talking about their plans and we always go to this house for Xmas. So I would have had to tell her we weren’t going, which would have just brought the upset earlier if you see what I mean.

She’s been crying a lot this evening and saying she wishes she was dead which is quite worrying

livpotter · 20/12/2020 18:05

Sounds like a rubbish day dimples!

I would definitely ask them to clarify the provision mumofsend. It's amazing what they can and do get away with!

Glad you're ok open.

Sorry about the school messing you around still danni.

Yes we're now in tier 4, it doesn't really affect us as we had no plans and don't do much other than going to the park anyway. It's very sad seeing pretty much everything on the high street closed, feel very sorry for our local shops and restaurants.

livpotter · 20/12/2020 18:06

That's really sad onceuponatime. It's really difficult for children to understand what's happening and all the sudden changes.

Onceuponatimethen · 20/12/2020 20:11

@livpotter I’m glad it won’t ruin any plans for you guys and thanks for the support.

I know exactly what you mean about the businesses. Dp and I were saying today how concerned we are about our local high st

dimples76 · 20/12/2020 20:35

Onceuponatimethen so sorry that your DD is so upset - good that she is letting it out though.

I went into the city centre of where I live on Friday with DD as I fancied a change of scene and wanted to support local businesses. I found it so depressing, so many empty units, hardly anyone around, grey and drizzly with one busker singing carols badly - it truly was in the bleak mid-winter.

I can't remember if I already mentioned but DS is pulling out his hair again. This is his 4th episode of doing this. Last time was 14 months ago. I went to the GPs about it last October and he was referred to CAMHS. We have been 'under' CAMHS since then but without anything actually having been done. I am going to email the psychologist a photo of his large bald patch in the hope that they take it more seriously. V surprisingly yesterday I got an appointment letter from paediatrician we used to see for January. DS's Endocrinology consultant queried why he didn't have a paediatrician overseeing his different health needs and said that she would try to get him seen. His original paediatrician was great so hopefully she may be able to help...

livpotter · 21/12/2020 07:03

Sorry that is happening again dimples, it must be very stressful for both of you. I hope the paediatrician works out.

Early start here, ds is getting very anxious/excited about Christmas, which means lots of repetition and noise!

danni0509 · 21/12/2020 09:03

Bless you dimples, sorry I don’t have any advice regarding hair pulling it’s not something ds does, hope you can get some ideas from them.

Ds had a period of skin picking / picking off scabs he had to have 3 lots of antibiotics for separate incidents, his skin was such a mess. Thankfully he’s stopped it now but last summer was a nightmare I had to take him to a & e one night as his leg was swollen and red & was hot to touch and the red was spreading so they made me draw on his leg and then it went past that so they thought he had cellulitis, I think he did anyway! He had green oozing pustules from his knee cap down to his ankle I just had to keep trousers on him and constantly stop his hands picking and give him 2 weeks antibiotics and the nurse had to keep dressing it was horrible x

danni0509 · 21/12/2020 09:04

Liv ds is excited for xmas too x

dimples76 · 21/12/2020 09:25

I find the hair pulling/self harming behaviours the most difficult to manage. He used to chew his fingers a lot and broke the skin frequently. Fortunately although he still chews and sucks his fingers he doesn't damage them any more. Unfortunately DS has never used any of the sensory toys I have have bought to redirect his hands. Currently his left hand is either in his hair or playing with his penis - lovely! And 2/3 fingers of his right hand are in his mouth. Yesterday he did make me laugh though. Sitting in the living room I said to DS 'you shouldn't be playing with your penis in the living room'. DS was most indignant and said that he wasn't, he was stroking his balls Hmm

It is v wet and grey here so I am lucky that I have managed to book us in for a swim this morning.

Christmas excitement has not really hit yet but tomorrow we are going to an open air museum (well the inside is closed at the mo) and we are booked into see Santa. I am v excited!

danni0509 · 22/12/2020 19:11

Open, how are you? Hope all is still ok x

danni0509 · 22/12/2020 19:11

Hope you enjoyed your swim dimples & the visit to Santa x