Primary school auties: summer and beyond - thread 5

[openupmyeagereyes]

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

Hi @MrsDuBeke I’m also a newbie. Lovely to hear your ds has had a great Xmas and hears hoping you get closer to a special school place in 2021.

Happy new year all!

Dd started a new and really obvious facial stim last week which was constant and looked like she was yawning and simultaneously twitching constantly. I got worried because there is a pattern whereby she gets a particularly obvious stim about once a year, other kids are mean and tease, she then gets really really upset for several weeks and then she stops to avoid the meaness.

I tried so many different things to stop it including gentle suggestion to do it only in her room alone, gave her an age appropriate chew toy in case she is seeking oral feedback, tried showing her how it looks and that people might find that surprising.

Feel really guilty about this but in the end I cried and told her to stop and now she’s 95% stopped. I told her that I don’t care what she does with her face, but that I know from experience she will care if other children are surprised and then comment on it.

Feel like she should be able to stim to her heart’s content if she wants but NAS site does say it might be worth trying to support the child to redirect the most socially inappropriate stims if they can. I feel like I handled it badly but then I can’t always get it right

Sorry about the rant!

Welcome MrsDuBeke. It’s great you have everything in place. What is the specialist provision like where you are?

We’ve had a strange time. I was fine with the covid until day 11 when I developed chest pain and palpitations. It was very scary and I ended up in A&E one morning getting my heart checked. Thankfully all tests were fine and after a week it seems to be settling down now - just a few twinges - and I’m trying to take it easy. It really is a very unpredictable illness and the worry about whether you’ll even be able to get care, or an ambulance if you need one, makes it much worse.

Ds is still waking around 4am which is tedious. He is due back at school on Tuesday and I’m really not sure how I feel about it. I have already warned him there’s a chance schools might close again.

Oh and he lost his first tooth. Precipitated by biting and pulling on my clothes with his mouth during a tantrum. Hopefully that has put him off that behaviour for good, I kept warning him it would hurt his teeth.

Happy New Year to all.

Open that must have been v scary. Glad to hear that your health is improving.

Received email from school this evening stating that they are only partially re-opening. They sent around a questionnaire re key workers earlier and said that they will contact parents of other eligible children tomorrow (inset day). Feel like I'm going to have another restless night as I am struggling to decide what is best to do when they call me. DS has said repeatedly during the hols that he misses school (he has never said that before during holidays).

DS slapped DD across the face earlier, then DD slapped me and DS became v angry with DD for hitting me - fun times! They actually played together really nicely earlier - it was just a shame that the game involved throwing Christmas decs around the room.

Happy new year! Hope everyone is well!

That sounds tough dimples. We've made the decision not to send either child back to school, it's just not worth the disruption if there are staff shortages or they have to self isolate again. Really hope this is the last time this has to happen!

Glad you're ok now open, been thinking of you.

Hi mrsdubeke, we just moved ds from mainstream to special, he did two years in reception and found it very difficult, he's much happier now.
I would start looking at special schools early as it can take a long time to get a place, although I imagine it's quite difficult with the current situation. If you feel that mainstream is really not working you can always call an emergency review but otherwise you would use the EHCP annual review to get the process going.

Once that sounds very hard. Try not to beat yourself up, you are doing your best and it is very hard to explain things when you are preempting a problem rather than reacting to one. Did you say dd has Tourette's? Or is it an ASD related stim?

Open I went to a&e in September I’d been having on and off chest pains for about 4 weeks (I do sometimes get them for unexplained reasons anyway so wasn’t too worried) but I was breathless aswell and this particular day I felt like I couldn’t breathe at all and the oxygen thing I have at home I put on my finger and it was 94/95, so I went to hospital as the gp couldn’t see me and the clueless junior dr up there did an ecg and said your fine you can go home, so I said no I want a chest X-ray, anyway I had a chest infection after I insisted on the xray (I had zero cough though) and have been fine since after I had the weeks antibiotics. I never realised you could have a chest infection if you didn’t have a cough.

I sometimes get palpitations too, they aren’t very nice, I put mine down to stress! Hope you’re feeling better now x

Dimples & liv, I’m not sending ds back if they close this time, he’s back tomorrow but if they do close schools he can stay home no point to send him in for 3 hours a day when they don’t want him at the best of times x

Onceupon, ds makes autistic type noises all the time, which I accept is part of his autism, but he does a certain one which is very loud and I’ll be honest (I’m going to hell!) annoys the shit out of me. I snapped one time and said ds will you shut up! you sound like a horse!

Don’t beat yourself up xx

Mrsdubek my ds is waiting for a special school they’ve said he needs one and agreed to fund it, there are just no spaces in any around us, so we are waiting now for god knows how long until something comes up x

Oh well, there we go. I’m glad we had an inset day today. I expect I’ll have a call from the SENco this week to discuss ds’ risk assessment.

Well ds school just text and said no one to come into school tomorrow apart from critical workers children with no other childcare and critical workers to email the school by 9pm.

Absolutely no mention of ehcp / vulnerable children.

I was happy to keep ds home for 2 weeks max (which is what I read it would be) but not until end of feb minimum like they’ve just said - on top of the 3 weeks he’s just had off.

😕😩😢

Never mind!

I’ll just have to wash my hair and shave my legs in March 😂😂

I’ll just have to wash my hair and shave my legs in March 😂😂

Just take it one day at a time. It’s all we can do.

I’ve been gearing ds up for it the last couple of days. It’s his birthday this week so at least he’ll be home for that.

I have opted to send DS back to school tomorrow. I think that it is probably the best option at the moment because he does cope much better with the structure of school. His TA sent me a v supportive message encouraging me to send him in. Feel v nervous about sending him in though. Especially as his bald patch (from pulling his hair out) is impossible to miss. I am worried that other children's quest/comments will upset him. His cousin asked him about it the other day (in a curious rather than unkind way) and he was v subdued afterwards.

Going to the GP tomorrow with DD about her gross motor development delays - possibly the start of another SN adventure.

Hello all; I hope you’re all OK... I’ve been checking in but everything’s been so chaotic here I’ve barely had time to do anything.
I have a question which keeps cropping up and I thought I’d ask you more experienced folk...
DD (5.5 years) has a Thing which I’m not sure is usual or not...she doesn’t seem to think of anything if it’s not actually visible to her there and then. Almost object permanence but not?! For example, when school is shut she never asks about it or talks about it; friends and relatives are never talked of or mentioned; she never asks to see anyone either. The other day I wondered aloud what her dad might be doing and she said “well I don’t know because he’s not here”. If she sees people from school outside school (at the supermarket for example) she never acknowledges them and will actively try to hide or avoid them. I don’t know what my question is, really; do your kiddos do similar? Is this that Theory of Mind thing? Or just a usual kiddo thing of if it’s not here it doesn’t exist?!!
Thanks for any musings in return...
I hope all this school closure goes as smooth as it can for you all.

Sending lockdown solidarity to all and thank you @livpotter and @danni0509 for the support. Really helps! I had wondered about Tourette’s @livpotter but dd’s SALT thinks it is ASD stimming

@furrycat1978 I haven’t experienced that with my dd exactly but I wonder if it could be a rigidity of mind thing as well as possibly theory of mind. Eg - you belong to school, school person, so you DON’T belong here?

@furrycat1978 ds is exactly the same. Out of sight out of mind! Unless I’m specifically talking about it or it’s right there in front of him he talks about the moment he’s in if that makes sense, i’ve had a few family members die the last couple of years (3 of my grandparents, 2 of which happened this year) and ds doesn’t even realise, I’ve not mentioned it to him and he hasn’t asked where they are or anything. His 1-1 he worked with for 2 years who he adored stopped working with him in July and she hasn’t seen him since and he’s never once mentioned her.

Really sad when you think of it

He also doesn’t know that I don’t know what he does if you know what I mean.

So for example, I’ll say what did you do at school today ds, and he’ll say ‘you know what I did’ I’ll say no ds I don’t because I wasn’t there. Pleased to know ds isn’t the only one who is like this.

Ds school text twice at 23:48 last night, I was fuming as my phone went off really loudly it woke dh up who had to be up at 3.30am for work! Then I couldn’t get back to sleep until half 1 after that, It said in capitals only send your child to school Tuesday if both adults in the house are key workers and you have no alternative childcare!

I’m sure parents were delighted to have been woken for that.

Bless you dimples x

This year = 2020. Forget we are in 2021 now.

Sounds like you are making the right decision dimples.

Your ds's school danni!! I'm sure they could've managed to text a bit earlier!

Furrycat my ds does this too, everything is very compartmentalised. He is getting better about talking about things in the past/not directly in front of him. He has an amazing memory so it's not because he doesn't remember, I think it's more that he needs prompting to understand that I don't know things unless he tells me. It's definitely getting easier as he gets more verbal.
I remember when he was in nursery we spent 20mins with the whole nursery looking for his favourite teddy. right as we were about to give up he walks up to another kid's bag, unzips it and takes the teddy out. He then looked at me like I was a moron for not knowing it was there.

Open hope you hear from the school today.

Ds school are pissing me off already.

They haven’t even contacted us to ask if we wanted to send ds in, I have only had the same generic texts all the other parents have received last night, they have put some work on tapestry for year 2 for this week at 8am this morning and tagged ds in it but it’s not work appropriate for a child working at nursery levels academically. Not appropriate whatsoever, where is the differentiation???? His class teacher put it on aswell 😳

Read this poem count the verses, does the poet use alliteration? Pick your favourite verse, draw an illustration of the verse etc etc! He doesn’t even know what a poem is!

The fuck.

Ds has done pe on YouTube (pe at the farm, pe at the jungle) he’s read a book and done 10 minutes drawing.

Just annoyed with school, it’s asif he doesn’t exist, he exists when they receive 17 thousand pounds a year for his education plan though?

My mum said ring them, no I’m not bothering! I’ll leave it to see how long it takes them to get in touch..

Danni that is shocking! In the original lockdown DS was not offered a place originally. This time I got an email saying that they could offer him a place and did I want to accept. They are live streaming two 20 min classes today for those working at home - I can't imagine that I could get DS to sit through those! DS was pretty chipper about going back to school and we had a calm start to the day and walk to school. But then just after he walked through the gates he fell over and his face took the brunt of it. A lot of tears and asking to go home. Fortunately someone sent for his TA and after some cuddles with me he went in holding her hand.

DD has been referred to paediatrician for investigation. She didn't take kindly to being examined by the Dr who she kept kicking. The GP observed that she 'does have strong legs'!

Furry DS has always been a bit different in that he talks about people who aren't there but doesn't accept that they have separate existences. When he was at preschool he would often ask where his key worker was in the evenings and couldn't accept that she had a life away from him. He was totally freaked out when we saw his teacher with her baby at a swimming pool once.

It’s really frustrating dimples, they didn’t want him last lockdown they actively talked me into keeping him home in March when they initially shut, until I nearly had a nervous breakdown and by co incidence bumped straight into ds teacher from reception in Tesco. I’d been crying, my eyes were red and ds was trying to pull my hair from the trolley seat and screaming, I told her it had been grim and she obviously went back home and told whoever so the next day the school phoned and offered him back (that was mid April)

This time they have just completely ignored us but even worse than that not put any work on at all. I’ve had zero communications from anyone at that school? Barring the generic texts?

I’m pleased dd has been referred

Anyway, I shouldn’t expect any less from his school, they are the epitome of awful how they treat him / me. No one I can even complain to as no fucker is interested! Been there done that and no one is remotely bothered about how they treat SEND kids. 😡

I bought ds some jacques of London wooden bits from amazon at xmas, the fractions puzzle set was one of them so I’m going to do that with him this afternoon then venture to Tesco with him which won’t be fun but needs must!