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

Senco wasn’t slagging class teacher off by the way.

She said the class teacher is lovely and really wants to get a grip on ds the class teacher herself just worries she’s not handling ds the right way.

Senco had said to her let mum know and she’ll work with you to figure it out, so class teacher has taken it literally and is letting me know every time.

Found this rather strange but anyway, because ds is biting they have bought him a baby teether to chew on. They haven’t told me before though, he’s just been chewing on it. I thought they would have to ask my permission as I might not want him chewing on it (could break his teeth or anything?)

Not to mention he’s nearly seven not a baby.

Class teacher told me this at the end of the day.

We have a chewelry bangle @danni0509 to redirect DS when he's really fixated! It looks cool as well and is big boy enough (DS suddenly getting sensitive to anything perceived as babyish)

Thanks Lottie I have seen some chew things before I think it was called a chew buddy or something like that. Are they hard? I worry about his teeth breaking. I have a phobia of him breaking his teeth because I’d never get him in the dentist to have it fixed x

Our one is BPA free bendy plastic rubber.

Danni ds has chewlery too, he's got a penguin necklace. Quite useful when he's in a chewy mood and when he used to bite a lot.

Open I hope you had a better day today. That was an interesting read. Ds used to refuse a lot at the old school, we often carried him in kicking a screaming which wasn't fun for anybody and actually on some days dd can be quite challenging to get into school. It's nice now ds actively wants to go to school. I hope it continues.
Ds is quite good with visual prompts but we haven't done a timetable with him simply cause we tend to have quite 'free flow' weekends. Mainly consisting of the park in the morning, then stuff at home in the afternoon. Not that much to timetable really but might be worth a go!

liv I don’t think it needs to be jam packed, you can always add in some cards for choosing time in between other things and don’t forget meal and snack times.

We had a bit of Hokey Cokey this morning - he wanted to go, then he didn’t, then he did. We got there about 15 minutes late so not too bad. He apparently had a good time and joined in with everything.

The specialist teacher had a separate Zoom with his TA’s yesterday morning and said it’s a completely normal reaction after so long away, which would have felt even longer to him. They have collated a box of special toys and sensory items for him to play with which he seems keen on, some are things from the classroom last year. Both his teacher and the SENCO read the Attwood article so hopefully that’s given them a bit more insight. I do believe they want to help him but it must be hard for them too plus the teacher has the rest of the class to worry about.

I have an appointment with a private EP during the holidays. I’m hoping she can help us with school as well as how to deal with some of the behaviours at home, we’ll see. It’s all on Zoom of course so not sure how effective it’s going to be. I know that some of our issues have been created by us but it’s so hard to undo when he gets so fixated on things and just will not give in. Hopefully she can help us plan a course of action to help unravel them.

I have found the last several weeks quite stressful though I think much of it is hormonal - I’m getting to that age! I’ve subscribed to the Calm app which I am loving and think definitely helps but I’m curious to hear if any of you have any techniques that you find help.

@danni0509 did you manage to out a stop to the reduced timetable?

All I've had the past three mornings is utterly relentless DD. Hitting, kicking, pinching, throwing things at me. It's been awful. If they can't cope with her I'm not sure how I'm meant to.

Ds has been sent home I dropped him off at 8.45 and 10am the school phoned, Ds bubble had a positive covid case a week ago and they have only just found out the info this morning so sent his whole class home even though ds hasn’t had contact for more than a week and probably not at all because he’s banned from the classroom. makes sense a week late!

Anyway he’s home and I’m pleased he is. He is on half term aswell so he’s not back until the 3rd November.

I picked him up and his 1-1 said he’d grabbed a girls pony tail and yanked her hair, loads of throwing / hitting all this morning, she looked pissed off.

So I took him by the hand and thought to myself well you haven’t got to deal with him for 3 weeks now, so happy days for you!

I said who’s hair did you pull ds and he said xxxx hair then he said did I make miss xxxxx sad?

I’m telling you, what he’s doing is for a reaction. He loves to see people upset / sad / crying. (Sounds awful.) but as I’ve said before he doesn’t understand complexity of emotions he likes kids crying it’s entertaining for him so I’m thinking his teachers are all no don’t do that making a fuss even if not intentionally etc as they have been told before zero fuss and he’s thriving off it which is what I’ve thought for a while so it’s incident after incident after incident.

He hits me at home he gets zero reaction. Afterwards, I do say you don’t hit mum it’s not kind etc so I’m still sending the message home but not immediately as to him that’s the reaction he’s after.

They recommend immediate consequences for sn kids but again it’s not one fits all, that is the wrong approach for ds he would buzz off that. If I ever shout (which is rare because it’s not effective) usually if I shout its in panic mode his eyes light up he thinks hey I like this (strange child) and he will do whatever it is again to get that initial reaction.

@Mumofsend they kept ds on part time for the full reception year (2 and a half hours a day) I was always complaining, in the end I had to contact the La and really complain. He started full days the month after he started year 1, then 6 months in covid happened but I still sent him in during lockdown and he continued full days then.

He started year 2 they wanted him 5 hours a day, I said no, he’s doing 6. Then they sent him home before dinner on a Friday because they couldn’t manage (they were phoning me from 9.30am) that was a fortnight ago and I told sendiass so the following Monday she phoned them and warned them it was an illegal exclusion they said it wouldn’t happen again, then they asked him to come in at 9.30 instead of 8.45 so I said for the rest of the week ok but not next week. I just have to be firm but they are major piss takers they always have been. Sorry you are having a difficult time x

Open I’m nasty when I’m hormonal, usually with myself 😂 I get so irritated with myself it drives me mad. I’ve got polycystic ovary syndrome aswell I’ve got a better moustache than Dh hence my wax pot so my hormones are all over the place, I bought some evening primrose oil to take as it’s supposed to help but I never get around to taking it.

Hope the EP goes ok.

Oh also open please share anything useful from the EP if you don’t mind! I know everything is specific for set difficulties but as much useful info I can get the better x

I’ve got a virtual meeting Monday morning (Dh is home on holiday to supervise ds thank god) it’s the first part of that online behavioural course the LA EP runs.

So anything I find that hasn’t been mentioned on here I’ll add.

The EP emailed me yesterday, she’s comes across as quite blunt in person but the email was pleasant, she personally runs the course and has years of experience so I’m hoping she can give some useful tips more than the now and next she recommended to school last week

Early bird plus is what I’m doing, the course for autistic children over the age of 5. I’ve a feeling it’s most of what I already know, but I’ll keep an open mind. Who knows.

It’s usually a ten week course but because it’s being run online it’s only 6 weeks.

It hasn’t cost me anything, so suits me.

danni I must look into our local version of this. I will ask the SENco to ask the specialist teacher about it.

I will share any good information I get from the EP.

We were on time today and ds had a good 2 1/2 hours. Hopefully he is remembering the things he likes about school and getting used to being back there 🤞

Mumofsend reduced timetables are not popular on these boards as it’s seen as a form of exclusion. Personally I think it depends on the child and the issue at hand. Your dd is clearly struggling with many aspects of school and pushing for a full day may not be in her best interests at this point. This is just my opinion though and I know it is not always as simple as that.

For us I am trying to focus on the long term and not worry about the learning he is currently missing by being on a reduced timetable. I am sure that he will catch up to the best of his ability (whatever that is) at the point that he is ready and able to do so. An unhappy child is not in an optimal position to learn.

I assume your dd has an EHCP? Did you want her to go to a mainstream school? What sort of school is it and how big? Do you know what adjustments they have in place for her? How inclusive is the school and how experienced is her teacher?

What sort of things work at home to help manage her anxiety and behaviour? Have you been on the EarlyBird type course?

@openupmyeagereyes I'm definitely not opposed to a part time timetable with the intention to build her up reasonably quickly to a full time table but long term it isn't feasible.

She has an EHCP with 32.5 hours 1-1. I would prefer mainstream as all our specialist options aren't great but she is really struggling with the size and sensory environment. She seems to be very demand avoidant which year 1 has really highlighted!

Did hit a bit of an irony moment as she accidently hurt herself at home and school have done safeguarding because she's impossible for one adult to keep safe 22 hours a day without respite. They've just removed all my respite with the part time timetable :(

At home it's a much kinder sensory environment which I think is the crucial issue. If we take school or normal life out of the equation and just stay home and chill she's a delight. Any form of stimulation can quickly cause huge issues :(

I'm definitely not opposed to a part time timetable with the intention to build her up reasonably quickly to a full time table but long term it isn't feasible.

Generally I think that is what they are designed to do. Ours was supposed to be six weeks (LA guidelines) moving from two hours to full time, however we’ve done 4 weeks and are only on 2.5 hours a day. Nevertheless I’m hopeful that we might be turning a corner, though half term may set us back again.

Hi all,

I just came across this thread, and although my DD has just turned 3 and is therefore not at primary school yet, I figured it would come in useful at some point soon.

DD was diagnosed with ASD in January this year, at 2yrs 3mths old. She is non verbal, although she babbles a lot, and is now walking and running independently, though she wasn't before lockdown (anxiety/confidence related as she has no physical mobility issues).

She's at a private mainstream nursery at the moment, though due to her age, we're going to have to decide soon whether she goes to mainstream school or special school. DH is adamant that she must go to mainstream, however I feel she won't cope, given she doesn't understand basic instructions and has no words.

I'm planning to start the EHCP process in January, as I've heard it takes a while to go through. I'd be grateful for any advice anyone has, and will also just read through to see how you are all getting on.

Hope everyone is ok.

You're right about the timetable open, I'll give it a try over half term I think.

Hi Itsovernow. I would definitely go for an EHCP as soon as you can. Ds went to a mainstream with very little understanding and almost no speech. He had a full time 1:1 provided through his EHCP. He repeated reception twice then we decided it wasn't working and moved him to a special school at the beginning of this year.
I would suggest going to look at all the schools you can in your area, specialist and mainstream, then you will really get a feel for what might suit your dd.

Welcome itsovernowthen, is there a reason you’re waiting until January to start the EHCP process? Are the nursery going to apply or will you do it yourselves?

danni I hope you are all symptom free.

We are ok, school actually went well last week after Monday’s refusal though I’m not convinced he’ll go today as he has been awake since 3:30...

I'm stuck in a battle with the school and LA. LA appear to be on my side somehow. School are being dicks.

Nothing like making it clear they no longer want to have to deal with a child

I have had a day! Head called to say DS unmanageable and if I don't pick him up she will exclude him, this was at 11.30! Then I get nicely nicely treatment from class teacher telling me about all their new strategies. We are now concentrating on calling it safe and unsafe behaviour (not naughty or nice) and I have banned numberblocks as it was becoming a true obsession...

Sorry about everyone else's rubbish time too!!

@livpotter

Hope everyone is ok.

You're right about the timetable open, I'll give it a try over half term I think.

Hi Itsovernow. I would definitely go for an EHCP as soon as you can. Ds went to a mainstream with very little understanding and almost no speech. He had a full time 1:1 provided through his EHCP. He repeated reception twice then we decided it wasn't working and moved him to a special school at the beginning of this year.
I would suggest going to look at all the schools you can in your area, specialist and mainstream, then you will really get a feel for what might suit your dd.

Thanks for the advice, I have started making a list of local schools which may be suitable for DD, then decide. It's difficult at her age as we don't know how she'll develop; for example she couldn't walk independently for a long while, then literally one day she suddenly started walking and running herself. Recently she's been responding to rolling a ball back and forth, which she hadn't done before about a fortnight ago. I really don't want to make the wrong school choice and put her at a disadvantage compared to her peers.

@openupmyeagereyes

Welcome itsovernowthen, is there a reason you’re waiting until January to start the EHCP process? Are the nursery going to apply or will you do it yourselves?

danni I hope you are all symptom free.

We are ok, school actually went well last week after Monday’s refusal though I’m not convinced he’ll go today as he has been awake since 3:30...

I'm waiting until January mainly for two reasons;

1. DS4, who is quite advanced for his age, will be starting at school in September 2021, as he turns 5 that same month, so I'll need to focus on his schools application before then. Once 15 January is out of the way, I'll start the EHCP process as DD doesn't start reception until September 2022. It'll be me having to do all that paperwork as 'D'P does nothing in terms of the children's admin, and the bare minimum in terms of supporting DD.

Both the nursery and Early Years SEN team at our local authority will be helping with the EHCP. Reading through some of the battles people have on this board, we're very fortunate to be able to access that support from our LA.

1. I'll be leaving the aforementioned DP in January (he doesn't know this yet), so will have more head space to devote to DD's school career.

I also work full-time in a Director level job, plus I organise everything house related (except taking out the bins ), so it's a juggle managing my time. My parents live nearby, and do more in terms of logistics support for the children than their own father does!

How does anyone else cope with having an unsupportive DH/DP, full-time working plus all the extra support you need to provide to your child with SEN?

@itsovernowthen unhelpful response but I kicked my unsupportive DP out. He then walked away from my two fully as he couldn't cope with DD. It is genuinely easier as a single parent than with a third overgrown man child!

I also had to leave my job which was awful but DS was having monthly hospital admissions and DD has pretty much needed me 24/7 on call. I'm now a mature student retraining with a long term aim that as she gets less dependent then it will set me up nicely.

DD is genuinely a full time job. I love her dearly but DS doesn't get a look in. The EHCP and current school fiasco is near enough breaking me emotionally. You do somehow just get through it