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

@danni0509 its 6 here for "severe cases" and both school and I scored her off the chart so it was quite clear cut.

That was part of the reasoning for saying no to medication as well as the fact they often suppress appetite which is the last thing she needs.

I'm not entirely sure re-DS. I think the school have said no because of DD and his plan is actually suited for a mainstream. That risks him being in any old mainstream which is a qorry

Yes ds is severe. He got referred to the epilepsy clinic and the head neurologist said he’d never seen a child like ds before. Most professionals we see say that 😂

His constant sensory seeking makes him worse though, I know your dd is very sensory aswell so may be why it’s exaggerated.

@danni0509 we get similar and then I get a mountain of comments of how its so surprising because she is a girl 🤦‍♀️

Sounds similar here with the sensory seeking. I suspect DS will be ADHD too but his is constant whereas DD is worse if particularly anxious or particularly sensory.

That sounds like my DS @Mumofsend he has asd and extremely demand avoidant which, when you ignore his triggers and try to treat him like an NT child, set off his Adhd type behaviours. His stems from anxiety and a lack of feeling in control. We realised how his worst period last October was probably due to anxiety about going back to school, a place that we had spent telling him wasn't safe since the previous March due to covid! Hence why he is in school at the moment!
@danni0509 how nice to have your parenting skills finally recognised! My DS is the same with video calling btw, at xmas my parents even tried to facetime him, and he got so cross he threw all his Lego at the laptop. He can't even tell me why he gets so cross, bless him, but something about it upsets him. He also hates it if he sees school and home lives mixing, eg if I pop over to talk to his 1:1. He seems happy today, got a learning medal for doing phonics yesterday, which is a first! I showed him how to add columns of numbers up on excel yesterday, cue much excitement.
@openupmyeagereyes we have the songbirds books too. DS will sometimes read them but at the moment is working through the mr men books instead...that and the TV times!!

Great to hear your great parenting being recognised Danni. Hats off to you Open for the home schooling successes.

Today has been v mixed. As I think I have shared before DD's adoption was being contested - today I learnt that the judge had ruled in my favour and now she is legally mine. I was on such a high. Strangely yesterday DS asked if DD's surname is the same as ours and I told him that it would be soon. When I picked him up he seemed really excited to hear that we all have the same name now. I wish I hadn't tried to turn it into a celebration (it was v low key - just a takeaway!) Any way he later screamed the house down which lead to DD crying inconsolably. So badly that my next door neighbour (our house is a semi) texted to ask if we were okay and could she help - they are lovely, I didn't take it as a criticism ...

Also jealous of some of you securing assessments and diagnoses. We have been referred back to the paediatrician we used to see when DS was younger so perhaps we might get somewhere. CAMHS has gone silent on me again.

dimples that is fantastic news, many congratulations 🥂

Good to hear the home learning is going better open and 12-18 months isn’t too bad.

It feels like more than that danni. When I look at the work his class are being set compared to what he’s able to do, particularly in English, it feels more like two years. Still, eight other children in his class failed the phonics screening so there must be others that are behind too.

And yet when he’s motivated he picks things up really quickly. He got a new Switch game for his birthday and he’s been working it out watching videos of it on YouTube.

Mrs dubeke ds is v demand avoidant too, school had a specialist in to visit ds for the day in September, he said ds had pda, but I’ve looked into pda before and he doesn’t fit all the symptoms, like he’s not great with pretend play which they usually are and they are better at masking in social situations but ds doesn’t mask anything and a few other things that don’t fit so we just say he has demand avoidant profile. He absolutely will not do anything he doesn’t want to do and everything is a battle, it’s exhausting.

Dimples, I’m so glad the judge decided on keeping her with you, I’d of been furious for you if it had gone the other way. I’m so pleased she is legally yours and has yours and ds name now x

Open I know what you mean, I looked on tapestry at the work for the other children, it seems years away from ds being able to do any of that, but then I also know what you mean about them surprising you. Ds said to me the other day mum do you know what a fuselage is? I was like no idea ds! He said it’s the main body of an aircraft. Yet he can speak like that and know things that even adults don’t but still can’t dress himself or use the toilet independently, hes getting really cheeky aswell with his answering back and when I see other 6/7 years old in that respect he seems nearly age appropriate, but then years and years behind in other areas and can’t seem to be able to do simple things even 2 years can do! Autism is a very odd thing isn’t it.

DD's diagnosis includes significant demand avoidance but she absolutely can't mask or do role play. I think the Dr said that for many they don't neatly fit into the box. I would class her as more classical Autism than PDA.

I keep getting "she is a girl, girls can mask" a lot at the moment or told "she presents like a boy". Its driving me up the wall with the people saying it.

Its the demand avoidance and inability to sit still that the school can't deal with.

Wonderful news dimples!

Hi everyone, can I join in? My child is home educated so I don’t know if I’m allowed here! She has ASD/PDA. Really feel in need of being in the (online) company of you lot who understand, after a slightly shitty phone call today with a professional who I’d previously thought was on our side. Harrumph. Hope you’ve all had a good day :)

Hi Rhino of course you're v welcome. Sorry about the unhelpful phone call. I need to chase up CAMHS tomorrow and I am fed up of fighting for everything

Sorry to hear about the rubbish phonecall.

Fed up of those at the mo and just keep skipping the calls!

Hi @rhino1234 welcome to the thread. I’m also a newbie.

I get the shitty call thing - I’ve been really struggling with various meetings. Sending you some sympathy

We had a meeting before October half term which involved the head being kicked out by social care, me losing the emotional plot and the LA still describing the head as the overemotional one! Says it all really.

Sorry the meetings and calls are so crappy. I tend to struggle reading reports more than anything

@dimples76 @Onceuponatimethen @Penguinbananas Your posts have really lifted me, thank you. Boo for shitty phone calls all round! I hope all of your next calls go better, fingers crossed.

I feel like what I say is often twisted in some way and I feel like I’m constantly on the back foot. I am of course, since I’m autistic too but I don’t dare say that to any of them!! Not to mention the rude questions and judgement... Harrumph harrumph. I need to shake it off and not let it get to me so much.

How have everyone’s days been?

@Mumofsend x post, thank you too! Wow that sounds eventful. Did you get what you needed in the end after all that?

@rhino1234 no! As the school essentially got told they are stuck with DD so the head made it known he isn't happy. Got told how my 6 year old makes staff want to quit and all. There is apparantly nowhere else for her to go.

@Mumofsend that sounds really awful! I’m so sorry!!

@rhino1234 I’ve come to realise that I likely have adhd and am quite anxious myself so all the stress is pretty hard to cope with!!!

@Onceuponatimethen thank you, after the initial shock I've got quite thick skin.

I wouldn't have minded so much but she isn't hurting other children, she isn't doing anything other than her well identified additional needs that literally 6 weeks earlier school said they can manage.

I'm 90% sure i would receive an autism diagnosis!

I have actually toyed with getting a dx myself and then writing to school with the reasonable adjustments I need, but I’m sure nothing would change

I just thought I’d update where we are with ds school situation.

His ehcp caseworker has consulted with 2 special schools on Monday (both out of borough, the in borough she consulted with previously had already came back and said no and when the caseworker pressed them to prove they couldn’t admit him they recently sent her a load of documentation back to state why they couldn’t give him a place so that’s a total no go.

So the schools she is in consult with right now, (1 is 25 minutes drive and the other is 1 hour 10 mins) the last one is too far really but not really got much choice and she will phone me when either has got back to her she said they have around 10 days left of the legal time frame, so I’m hoping for the closer one ideally but then the further one has an outstanding ofsted and does also look good so I’m going to just have to wait and see, he will get a taxi provided and because of his needs he will have a 1-1 escort in the back with him also, she’s assured me that he will always have the 1-1 escort and that a harness will be provided in the taxi and that the la will be paying for the costs as part of his plan.

She also phoned ds school Monday and spoke to the headteacher and said ds needs to be in for 6 hours a day not 2 and a half and that the la will be happy to fund them any additional costs if they need to employ an additional member of staff for him until he leaves this year and his school said no! The head teacher said it’s not just about staff it’s about the school building and has now started saying they don’t have enough space to meet ds needs 🙄🙄

Heard it all ! the ehcp caseworker said as soon as I came up with a solution she found another excuse and then the headteacher said he needs a specialist school no amount of money will help us meet his needs.

How horrid! His ehcp caseworker said ds needs to move ASAP!

His caseworker has consulted both of these schools for NOW and if they say no she has asked them for September so he could move shortly if there is anything.