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

Well ds had his lunch at school today and what did you guess it didn’t go great...

3 of them came out to tell me.

He didn’t eat, wouldn’t drink, it stressed him out bla bla bla

So now they want to keep him having his lunch but being picked up same time (2.5 hours) for a while longer................... so he’s still doing no additional time.

Once he leaves this school I think my mental health might start to improve, seriously.

Oh Danni they really are taking the biscuit aren't they.

I enjoyed reading about your walkie talkie exchanges.

Open I feel sorry for myself when DS wakes me at 5:30 then I read your posts.

Liv that's good that DS can start back part time.

DS's walking seems to have got worse lately and he keeps tripping. I think that it's because he's really dragging his feet on the ground, more shuffling along. He fell over this morning on the way to school and landed in a puddle. He is getting two sessions a week with PE apprentice and another boy in his class. I have said before that it should be daily. EHCP review should be next month ...

dimples we used to feel sorry for ourselves when ds used to wake at 5:30 every day. I'd take that now!

Ooh walkie talkies are a good idea, at the moment DH or I, mostly me, stay with DS until he's asleep every night. @danni0509 what a kerfuffle with school, so glad you have the place for Sept!
@openupmyeagereyes hope you manage to get some sleep later.
Hope everyone has a good weekend!

MrsDuBeke thanks, I average 6.5 hours so it could be a lot worse.

No school work done today for the first time but he did read a book this evening. I’m hoping to book an appointment with my private EP to talk things through, also about how to support the return to school.

Sounds like you've achieved a lot this week open and inspire of the early mornings! Ds was up a 4.20 this morning. I was a bit annoyed but when I got upstairs I found he's bought the milk in for me.

It's going to be so great once he's not at that school danni.

Walkie talkies are a great idea furrycat.

Does he see a physio dimples?

Ds school 😡😡

‘Apparently’ his specialist teachers pipes have burst and she needs this week to sort out her house / insurance etc. (She seems unreliable, she was an hour late on friday)

So ds school have said that he will have to do his 2.5 hours now until she’s back after half term!

I said absolutely no chance. So they said they can’t help the situation they are short staffed and don’t have anyone for ds as the dinner lady only works mornings! So I said that is not mine or ds problem, it’s not acceptable, it’s not even legal.

I said you wouldn’t contact the rest of pink class parents and say sorry x teacher pipes have burst don’t come in for a week! You would just get another member of staff for the children without a second thought.

They have already been paid the 20k plus fee for this teacher by the local authority 2 weeks ago.

I said to his class teacher it’s a total joke he’s 7 and had 3 years part time education. No wonder he’s so behind etc etc I told her I’m phoning the local authority this morning.

I’m fuming (as usual!)

Ps I don’t believe her pipes have burst, it’s that old chestnut, it’s cold so she can use this an excuse.

She was an hour late for work on friday, and she was egging on his class teacher every day last week to have ds in mornings only and build up slowly, she’s doing anything for an easy ride but it’s not what she’s getting!

I thought as soon as I met her she seems like she’s inexperienced / full of excuses.

Good judge of character me 😂😂

Even IF her pipes had burst, that’s still no excuse to fob the disabled child off as usual. Sort something else out.

Bastards!

Hugs @danni0509
You're right to question it and say, if it was an NT child/class, a substitute teacher would be found straight away. I always hate the 'well, we have 29 other children to think of' line too, like my child has a choice to be overwhelmed, no its not a choice and he deserves a full education as much as any child does. Even our lovely HT said this last year and I had to push back and be firm to get him the support he needs. The fact that your DS has an ehcp with full funding and still isn't supported is morally wrong and illegal! I think the school are very much to blame for the dinner lady situation as they have allowed him to get used to her, so.of course he's resistant to anyone else, any autistic child would be very similar I think with such a big change. But the specialist teacher should have some strategies, as she is such a specialist, shouldn't she?! Oof. If we were all closer, I'd shout you a coffee!

Oh danni

Firstly, do people even get burst pipes when it’s cold any more? I thought central heating and hot running water mostly put a stop to that, plus in most of the UK it doesn’t get that cold anymore. We were in Edinburgh one winter and it was -10 but less common further south.

Secondly, who says they can’t come into work for a week? Time to organise someone to come and fix it, time to be there while it’s being fixed, yes. Surely the rest of the time you just crack on.

I would be emailing all these issues daily to his EHCP case worker. It’s unacceptable for him and a waste of the money they have paid the school.

Outrageous.

Ds still resisting school work even with more bribing. He’s also still waking between 3:30 and 4ish. It’s quite enough ds, really!

I have a call with EP tomorrow.

The pipes thing does sound like rubbish. The only time I've heard of it in recent years is if people have gone away for Christmas and not left the heating on low. But as others have said, even in that case a standard school teacher would not just be sacking off the rest of the week....

It's so frustrating, as if they keep giving up on things having hardly tried how do they expect DS to adjust? One minute they are saying he has to have this super-gentle transition that will take months, the next minute that it's totally fine for him to have no teacher for a week... It's totally self-serving. How frustrating.

Snowy here but very dry snow, not really the kind you can make snowballs out of! DD got her new bike and is LOVING it. Very ready to go back to school though and missing her friends. I'm really hoping that Y2 will be back in the first tranche from 8th March and not have to wait. We've got a couple of weeks left until they announce their plans I think? Hopefully the numbers will keep coming down in the mean time.

Oh Danni words fail me! I am v sceptical re the pipes and also what employee or employer would normally say have a week off! When I was a teenager (in the early 90s) my parents rented out our house to students and when they went home at Christmas (despite being told to leave the heating on low) they turned it off. It was a cold winter and the pipes burst. I hope that the LA caseworker reads the school the riot act.

Liv DS was discharged by physio a few years ago. He did used to wear piedro boots and then insoles.

Open sorry that you are still being woken so early and then having to face resistance.

Ds bless him, I put him up on his iPad whilst I cleaned up after tea (he has a stair gate on his bedroom door) I heard it open so I shouted up ds what are you doing! Then I heard him having a wee on the toilet, he’s took himself to the toilet 😍 clever boy!

That’s awesome danni

Amazing @danni0509!

Ds head teacher has said if his specialist teacher isn’t in then it’s tough ds can’t attend as they don’t have anyone for him. (But he’s allowed in mornings with the dinner lady) I’ve just said to her that she is seriously discriminating against a disabled child, what she’s doing is illegal and she needs to tread very carefully.

Can’t get hold of ehcp co ordinator at all, who else can I ring??

Fuck this, not even putting up with it for a minute more. I’ve just told her to sack his specialist teacher.

I said any other job you was late one day on your first week then took the whole second week off you would lose your job instantly.

So every time she’s off (when she’s proving to be unreliable from the get go) ds isn’t allowed to attend (apart from mornings only with the dinner lady)

No! It’s cruel!

I’ve got head of send phone number at the local authority. Just going home now and phoning her to start with.

Spoke to the La ehcp co ordinator, she’s in agreement it’s shocking and she feels sorry for me and ds etc etc, she said nothing she can do as she doesn’t have the power to pull those strings she only deals with his plan but she knows a man than can (it’s actually a woman but it’s the phrase she used 😆) she’s getting her to phone me today. It’s the la co ordinators manager, that’s the head of send I mentioned earlier, she’s phoning me at some point.

Got off the phone, head phoned me again, she said the la have backed her into a corner, she said we as a school cannot meet ds needs he’s too extreme, we’ve been telling them this since year 1, ds doesn’t get educated we spend all our time managing his behaviour, she doesn’t know what the right thing to do is but even with a specialist teacher the environment is too much for him and it’s not making any difference, she’s not purposely discriminating against ds she would never do that etc etc she knows she’s failed him and feels awful but the local authority keeping him in a mainstream for so long rather than specialist is to blame aswell.

The specialist teachers pipes got sorted yesterday but then she text the head at 8pm to say she couldn’t come back today as she was snowed in (she lives in Barton the head just mentioned this - so I’ve text my cousin as she lives there too! and my cousin has said no we aren’t snowed in!)

Anyway the head just kept saying sorry but still no further forward with any of it.

I do apologise for boring you all with my ongoing problems! My dh and mum are sick of me going on and on... I write it all down on here as it’s sort of a log for me to look back on and see what happened / when so it’s there if I need to jog my memory etc.

The specialist teacher is from an agency the head just said and she’s on a daily rate and she won’t be paid for yesterday or today and if it continues she will ask the agency for somebody else (which isn’t good for ds in the long term is it?)

I said I wonder if ds has put her off? The head said possibly! But the head said she did warn her what ds was like, she said I had a very frank conversation with her and she went into it with her eyes open and being fully prepped on ds. She said she wasn’t expecting for him to be quite so bad in a mainstream school and she was suprised he was still at a mainstream. (Nice to know that’s what people think isn’t it 😩)

I’ll update you when / if this send manager rings me back x

Hello everyone 😊 I'm wondering if any of you have 10 minutes to spare?

I'm currently in my final year at Loughborough University, studying for a BSc in Psychology. I'm looking for volunteers to take part in my final year research project. I am investigating the differences in the eating behaviour of autistic and non-autistic children, as reported by parents, and how this influences parental mental health and wellbeing. The study aims to influence the support that is available for parents who have difficulties feeding their child(ren).

All information is provided completely anonymously! If your child is between 2-10 years and you have a spare 10 minutes, please could you complete the survey below! Thank you so much x

loughboroughssehs.eu.qualtrics.com/jfe/form/SV_1ZhLXKi1PEsjjdr

@Lborostudent55 I’ll do it for you later when I’ve got ds to bed x

Could we have some more information first please @lborostudent55 re: what the data will be used for, how it will be stored, how anonymity it guaranteed, etc.? Is it a funded project? What are the underlying research questions?