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Primary school Auties: into 2020! - thread 4

999 replies

LightTripper · 20/11/2019 10:44

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

OP posts:
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dimples76 · 12/03/2020 20:20

Open hope that phase passes soon.

Received the Tribunals decisions on my nephews EHCPs today - won one, lost one. Exactly as we thought but v stressful as if only one EHCP was going to be granted we wanted it for the eldest. We will fight on but it's exhausting and dispiriting

openupmyeagereyes · 12/03/2020 20:45

dimples I’m so sorry. What’s the next step? Wine

I think he had a much better day today thank goodness, hopefully we’ll end the week on a high.

He’s not really doing anything awful at home, just low level not listening. I shouldn’t complain really.

livpotter · 13/03/2020 07:08

I dread those phases open. But thankfully they are usually just a phase!

I'm sorry dimples. Was that for refusal to asses or refusal to issue? It's such a stressful time for you.

dimples76 · 13/03/2020 09:40

It was refusal to issue (we had previously won refusal to assess appeals for both boys). We felt on the day that we were going to lose older nephew's appeal because although we are sure that the his needs are not being met the LA's Ed Psych report was rubbish. We had thought of getting our own but that would have involved incurring debt. My sister is hopeful of improving his mental health and attainment when the schools close (she works at school). He is also under CAMHS now so hopefully they may be of help/provide better evidence.

I don't think that we have grounds to appeal and have to wait 6 months before we can start the process again. We complained to school and the LA that he wasn't receiving the support in his SEN plan (for which the school receives top up funding) and haven't had a proper response so will be escalating the complaints.

LightTripper · 13/03/2020 10:09

Sounds like there are things you can do, but so frustrating all the same. Hopefully the younger one getting support will help lift the load a bit at least, and free up a bit of headspace for your sister to focus on getting help for your older DN.

Makes me so sad that this help isn't available though. In the scheme of things it costs very little. If we can't afford to help vulnerable children then what are we as a country?

Anyway, off soapbox, back to reading about coronavirus work.

OP posts:
danni0509 · 13/03/2020 14:01

Sorry I haven’t been on for a while I’d like to say I’ve still been reading but I haven’t had time. Ds is being so awful I don’t have time to shit lately.

We’ve had pead appointment today, they have referred ds for his adhd diagnosis today now that he’s 6. He said today he does have adhd you know that I know that, I just need it formally diagnosing before we can medicate him, they have been saying that about 2 years but he was never old enough to refer until now, obviously medication is not what we really want (can play up with the heart etc Hmm) but we have exhausted every other avenue for his crazy behaviour over the years so what else can we do (!)

Today at the appointment ds was being ok ish, just banging a few toys and climbing the bed and walking around in circles trying to feed the pead pretend toast (fingers almost in his mouth asking the dr to eat it) 😂 we were in there for about 20 mins and his dr said based on what he had seen this morning he most definitely had adhd, ds was being ok though (I say ok, what I mean is not uncontrollably wild which he has done before in there - flooding the sink, climbing in the clinical waste bin and he once spun the dr round on her chair etc etc) so it must be really obvious to the trained eye even when we think he’s ‘calm’ like this morning, he’s obviously showing his adhd. We are just used to the wild child side the ‘calmer’ moments are so rare at the minute.

He asked about his dangerous impulses so I thought I know which one I’ll mention the driving my car up onto the path one and me having to emergency stop and then Dh piped up with oh yeah and a few weeks ago ds broke free from his mums hand in the queue and ran behind McDonald’s counter into the kitchen and started touching all the ovens and fryers and it took two of us to drag him out etc. Blush then I said another time he ran away at the beach down a posh driveway and before I had ran and got him in time he had dived head first into a big feature pond and cracked his head open. He just laughed and said I don’t need anymore examples Grin I had loads more should he of needed them!

He was writing to the school to ask them to refer him because that’s how it’s done here apparently, that’s no bother though school are 100% with me on everything, although the new senco is just a class teacher she’s just taken on the role so I’m not entirely sure she will know what to do with the forms etc since she’s been the senco about 2 months so I’ll ask to meet her first bcos if its being done it’s being done properly.

I told the dr this morning if he didn’t get medicated soon I’d have a nervous break down and I honestly think the dr thought I was joking (I wasn’t!)

I had parents evening this week and it annoyed me a bit actually, 10 minute slot. She just went over his learning plan for this term very quickly, it was ds to know numbers 10-20 I said he does? She said not consistently. Fuck off! Then it was to get him into the classroom a bit more he’s currently only going into the class about 30 mins a day (stop letting him play outside all day then) and then a 5 minute talk about his impulses, throwing etc and they need to work on the stop signal in a firm voice, I said that’s been a target since he was 2, it hasn’t worked in 4 years it just keeps getting carried forwards to the next bit of paper work....... then she mentioned he wasn’t working at the NC levels and was behind in all areas (you don’t say?) that was literally it. My mum said before as we left what a load of shit that was.

Before my slot me and my mum sat on the chairs watching the teacher and she gave the parents before us some phonic test sheets and going on about how well academically her child was doing etc. Then my slot was just really rubbish she was showing me a sheet from his ehcp of his targets which I already know about since I have my own copy!

danni0509 · 13/03/2020 14:02

light I’m also stalking about the Coronavirus, I keep refreshing worldometer for the daily numbers.

I almost cried the other night when I though boz was closing down the schools. I was planning to follow ds 1-1 home and find out her address to drop ds off too! Grin

danni0509 · 13/03/2020 14:04

open we have had ds melatonin increased to 4mg from 2mg from tonight and we have to trial that for 3 months then we can go up to 5mg and then 6mg and if that’s no better at our next appointment in 9 months time we can look in to something else, so good to have options!

danni0509 · 13/03/2020 14:07

I might download the app back and keep posting. Feeling really isolated at the min, can’t take ds anywhere anymore feel like I’m living in a prison with no one to talk too!

livpotter · 13/03/2020 14:30

Dimples I hope that CAMHS are helpful for your nephew. It so frustrating when the LA produce crap reports!

Danni it's great that you are finally getting a diagnosis for ds. Sorry that he's going through a difficult patch.
I totally get you wanting to follow his 1:1 home! School is the only respite and the though of being cooped up with the two kids is just not worth thinking about at the moment.

openupmyeagereyes · 14/03/2020 08:27

danni how did the new melatonin go?

It’s great you are close to a formal dx on the ADHD but how bonkers that the school and not the paed asks for the referral. I totally understand the mixed feelings about medication but you absolutely should not beat yourself up over it. They will monitor for side effects and hopefully there are a range of options and you will find something that suits.

Sorry about parents evening too. I’m grateful we had a separate session tbh and I didn’t have to overhear any other parents’ appointments.

You will not be the only SN parent dreading school closures, I know one in RL. It’s going to be tough for us to keep ds in for an extended period as he does love to go out.

dimples hopefully CAMHS can help your dn and the school will step up on his SEN plan for the remainder of this academic year. Your sister is really lucky to have your support.

Ds had another good day yesterday. His school have asked for donations of soap, paper towels and hand gel so will take some things in next week though I think the schools will close at some point next week.

Re. Corona, It’s absolutely crazy isn’t it? I am trying to keep my rational head on but am analysing every sniffle and washing my hands far more than is necessary in my own house probably. The Corona board is so full of scaremongering though it’s compulsive reading all the same.

livpotter · 14/03/2020 09:23

www.specialneedsjungle.com/calming-coronavirus-anxiety-children-everyone-else/

A friend sent me this. Found it a very reassuring read!

Glad ds has a good day yesterday open.

openupmyeagereyes · 14/03/2020 10:59

Thanks for that link liv.

We were supposed to be going to a SN soft play session tomorrow morning but we’ve cancelled. Those places are full of germs at the best of times. Luckily ds didn’t know about it. We’ll try and get out to the park later.

danni0509 · 15/03/2020 07:08

Open I'm not impressed with the new dose of melatonin tbh.

Last night I gave it at 6.30pm (I've tried different approaches over the last few months at how in advance before bed to give it and decided an hour before which is what ped recommends anyway) he finally went to sleep at 9pm after a long drawn out tantrum because I (yes, me) didn't have a specific pair of pyjamas on (ones with cats on) Then he was awake for the day this morning at 4.45am! Gah!

openupmyeagereyes · 15/03/2020 07:21

danni sympathies. How does that compare to a typical night before the change in dose?

openupmyeagereyes · 15/03/2020 07:27

We had our first CV talk with ds yesterday. We need to write and print off a (thought out) script because he is likely to ask the same questions over and over again...

It’s crazy to think that if the schools close they may not go back until September.

Last night I managed to get an online Tesco delivery slot for lunchtime today (for £6). I was most surprised. I wonder how much of the order will be fulfilled.

LottieBalloo · 15/03/2020 10:46

Well, we are in day 2 of self isolating as DS was sent home on Friday with a really bad cough and a temp! So thankful that DH and I can both work from home next week but what about after that?! Does everyone know about twinkl giving parents a free month to download tons of stuff? Although getting DS to do worksheets is always a challenge. Also bought reading eggs and we have Netflix but those dont always help with the spinning moods! Argh!!

LottieBalloo · 15/03/2020 10:48

Temp is now gone but school won't accept him with the cough!

dimples76 · 15/03/2020 10:54

I had a Tesco delivery on Friday and there were a huge number of substitutions/undeliverable items.

DS has been a real pain this morning and I am wondering how we'll manage together with my soon to be daughter (assuming that all goes ahead). Hopefully I will be on adoption leave and therefore won't have to try and fit any work in with DS at home.

DS is completely oblivious to what's going on in the world.

Danni sorry that things are tough. I am glad that DS has separate teacher consultations. I find it hard on the class parents WhatsApp group with the stealth boasting and stressing out about minor things.

openupmyeagereyes · 15/03/2020 11:40

That is so great of Twinkl and they have put together packs for each year group. We already have full membership though I only use it sporadically. At least all of my home school reading and stacks of workbooks might get some good use now. That said I see a LOT of screen time in ds’ future. If he’s at home all day then it will be hard to limit it as much as I’d like.

Two dc in ds’ class are self isolating with colds. One parent has WhatsApped to say they are pulling dc out due to concerns about her immunity. They are also Italian so across the situation in Italy which no doubt puts the fear of god in them daily.

I’ve just been round to check on our elderly neighbours. Only one there and she is ok so far. She has my number incase she needs anything.

Lottie I hope ds is better soon. Good luck with the week at home.

dimples fingers crossed ds settles down for the rest of the day.

danni0509 · 15/03/2020 12:03

Ds is oblivious to coronavirus too unless I say Cadbury's he doesn't give a shit about anything I say 😆

danni0509 · 15/03/2020 12:04

My sister in law is a teacher and on Friday she said 11 pupils were off and tomorrow she's expecting similar numbers

danni0509 · 15/03/2020 12:07

We have been to Morrison's this morning, couldn't get any paracetamol from Tesco yesterday and although I have some in I wanted more because no were seemed to have any. I'm having physio at the minute for a bad back and neck and pop pills like smarties most days lately so liked to be stocked up.

Morrison's had everything we need which I was surprised about.

openupmyeagereyes · 15/03/2020 12:21

danni great that Morrisons was well stocked.

We got our delivery, not as many missing items as I thought there would be though there were a number of things out of stock anyway. Poor guy was so frazzled.

The two dc are ones I know about. I expect there will be more throughout the school and probably in his class.

dimples76 · 15/03/2020 15:39

Lottie hope DS is better soon.

Fortunately DS has become calmer and we're now enjoying watching Trolls together