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

liv I’m glad I wasn’t the only one who cried reading danni’s post . Great opening up from your ds.

We had a settled two hours today, thankfully. The main issues are he just wants to play rather than work and he doesn’t want to be there all day (neither surprising following six months at home), as well as the impact of Covid restrictions on where he can go and what he can do. He gets upset and then his behaviour deteriorates and becomes aggressive. Hopefully the reduced timetable, or ‘phased reintegration’ as they call it, will help. School are involving the specialist teaching team and requesting EP which we had asked for anyway as he was last seen at nursery.

Everything is documented with a flexible plan to get him back to a full day. We will take it one day at a time, hopefully it will work but if not then we will have to look at a more suitable setting. I have also started looking at child psychologists. It’s a strange time to engage this sort of service but I think it’s a good idea.

Bloody Covid . Not that it’s the source of all our issues but it’s created new ones and made others worse. Same for many people I guess.

And I had a good, positive meeting with his teacher and the HT after I dropped him off. They are very understanding and supportive thankfully.

I'm glad school is supportive Open. Unfortunately the comments re DS did not seem height related (your memory is correct DS is v small although he has just made it back onto the centile charts for first time since he was 2). He had asked me to bring his favourite cuddy toy to pick up and he was talking to it as we walked home - apparently this is babyish.

What a lovely chat you had Liv

We are now in local lockdown so I need to break it to DS that my DSis and BIL (who he adores) are not coming this weekend after all. I fear if he cries I might too as the thought of their visit has really helped me through the last couple of weeks.

Arghhhhhhhhh 😤

Ds senco phoned me, she’s contacted the La this morning and the La are making things really difficult. (Shock!)

She said ds (new) ehcp co ordinator wasn’t very nice to the senco on the phone everything the senco said she had an answer for and was really abrupt 😒 she said she was annoyed at her tone & there was no need for it. She just kept repeating it’s a long process and it’s not going to happen overnight, it’s very difficult so the parents shouldn’t have there hopes up! (Cheeky bitch!)

They have today offered ds school additional ehcp funding to keep him and the senco said it’s not the money we want! We want the child to get the correct specialist support. She said to me chucking money at ds isn’t what he needs. He already gets the highest banding for a mainstream school and now they are some how magicking up more. Isn’t it obvious on the maximum amount already it’s not working 😡

Apparently, the LA said the SS should not of said they can give ds a place when there are children who have already been waiting 2 (TWO!) years for a place to become available. Why that is mine or my sons problem I don’t know! SS can obviously meet my sons needs NOW like they said to us yesterday. Senco said the LA were annoyed at the SS for saying that to us yesterday. (annoyed they will have to pay out more now?)

Also the La said ds hasn’t had any recent assessments by anyone outside of school (the last was about 18 months ago) but like the senco said your Ed physc is working from home we have been trying to arrange an appointment & how often do you need assessments on a child when the child is already in receipt of an ehcp.

Anyway the school have arranged for an autism outreach specialist to go into ds school Monday afternoon to do an up to date assessment but the senco said don’t worry he’s really good and says it how it is and we’ve dealt with him loads before and she’s having a chat with him afterwards and she’s asked me to go in at 2pm to meet him aswell. He’s going to do an up to date report to go to the LA.

They made the senco recall his annual review back which she’s done today and she said her and the head are going to sit though it and leave no stone unturned.

The senco said ds will get a place at SS but maybe not as soon as planned, but her and ds current head will work with us to get everything in place.

which is fine and I really do appreciate that, but the La can fuck off with those shitty tactics. It’s criminal!

I’m not being funny but if you see ds you can see he shouldn’t be in mainstream school bless him, why do they make things so difficult?

Ds school senco was fuming about the situation and she said the head wasn’t happy either, I don’t think it’s a case of they just want ds out as he’d be leaving there this year anyway to go over to the juniors, she said it’s unfair on ds keeping him in a mainstream environment as they don’t know what else they can do with him and they’ve tried all sorts of things, they do genuinely want what’s best for him.

At least they are on side anyway.

I’ve got sendiass phoning tomorrow so will let her know not sure she will be any use she is employed by the La after all.....

I feel like setting my council tax bill on 🔥 fuckers don’t deserve another penny of my money!

Thank you for your earlier comments btw!

Be back on later just sorting ds x

Oh no @danni0509 how absolutely heart breaking and just so stressful for you after you thought it was all sorted! Have you tried ipsea? I've heard good things.

danni how frustrating. It’s a shame the school got your hopes up though I’m sure their intentions were good. Have you emailed the prospective head to explain? She may have weight. Fingers crossed it can all be resolved even if it takes a bit longer.

Lucky your outreach teacher is going in to see ds, I think ours will be all remote. SENco is speaking to them Tuesday

dimples Such a shame, I hope ds isn’t too upset. Can you plan something special at home? Cake, movie night, whatever he’d like best to do

Oh Danni that's so frustrating. It's good that you have both schools on side though. You will get there but I agree your DS should not have to wait.

Hello again.

Things seem okay here - DS seems happy and school haven't complained yet. OTOH he's talking a lot about being on lightning or cloud and it seems to always be because of not sitting nicely. I can't really tell if this has happened once or happens every day, and I don't know whether I should be trying to help him sit nicely or telling school to back off. Both, I suppose.

@danni0509 That is such a ridiculous waste of everyone's time.

orinocos can you email the teacher and clarify? Glad it’s going well otherwise.

Ds did some reading with me today without too much persuasion. That’s a promising sign I hope. He said his favourite thing about school today was playing with the Lego.

Ugh @orinocosfavoritecake I hate those weather behaviour management systems and they really don't work for most asc kids. Mine would probably declare that the lightening or cloud is his favourite and 'be naughty' to sit there instead of the sun! Has your DC got a diagnosis? Maybe chat to the senco there and check his 1:1 support? Glad DS happily enjoyed reading @openupmyeagereyes, we are still doing so much maths as DS loves numbers, if I suggest reading at the moment (aside from bedtime routine stories) it doesn't go down well ha!

@openupmyeagereyes - have emailed senco, who's come back quickly saying that DS has been good most of the time and is settling in pretty well. So it looks like the picture I was building of him being constantly in trouble wasn't accurate.

@LottieBalloo I don't like the behaviour charts either - when my older NT child was in reception the kid who was on storm cloud most often was the one whose parents were going through a divorce at the time. It was hardly his fault if he was playing up! DS doesn't have a diagnosis, but does have a statement. I love the idea of a kid deciding that the storm cloud is cool!.

A good session here today. So glad we’re ending the week on a positive.

Next week will be 2 hours daily and we will increase the following week if it’s going well.

I hope all the dc are having a good week

Glad the reduced timetable seems to be going ok so far open.

Hope you are doing ok in lockdown dimples.

Danni, I'm sorry your LA are being so frustrating. I don't know why they are asking for a reassessment before they can give him a place at the school. There is no legal basis for this, like you say they are just delaying! The information from his school is more than enough! It's great that everyone else seems to be onside though.

Glad everything seems to be ok Orinoco.

We're ok end of another pretty good week really. Although ds left one of his 'support' toys (basically he has three toys that go everywhere with him and have done since he was about 2) at school. So that was fun trying to explain last night. I must say though that ds is generally getting much better at accepting things and managing his emotions which is good.

Everyone is pretty tired after a long week so I'm glad it's the weekend!

Liv daft isn’t it, they can reassess him all they want it’s so ridiculous, there is a reason he is already on the top band they give for an ehcp in a mainstream school in our borough. I’m not even sure it’s legal what they said Thursday to the senco even though we asked to change placement and that’s what the senco was actually phoning about, she went ahead anyway and told the senco they would increase the band to 8 offering an additional £2,000 to his mainstream school but like his school said we don’t want the money and that’s not what I phoned for. I need to speak to sendiass about that crafty shit but she didn’t phone Friday at 11 like she was supposed to! She did this a fortnight ago but phoned on the Monday instead so I’m hoping she phones me this Monday coming.

I know what you mean about certain toys, ds has that little kitten I mentioned before called pink whiskers he absolutely freaks if he forgets it, he left it at Liverpool train station in July we never see it again, so we had to get another ASAP from the entertainer. I sometimes get to our destination and drive back home to get it because otherwise it would spoil our day. At the minute he takes it into school and it sits with him while he does his work. He got the giant one for £25 my mum bought him it, it’s hugeeee he’s always trying to take that out 😂 I draw a line!

Open hopefully this week on 2 hours goes well and you can increase ASAP! You might aswell sit outside school and wait for him as by the time you get home it’s time to go back. I remember that from reception. Hope everything settles down.

Orino that’s not nice about the lightning and cloud thing as it’s not like your ds is doing things purposely.

liv well done to your ds for not having a meltdown about leaving his toy at school.

danni it sounds like you could do with a couple of spares of the cat toy!

The plan isn’t to get ds in full days as soon as possible. It will be around 6 weeks, increasing up to an hour each week if it goes ok. I’m fine with that, they need to work on getting him used to being back at school and all the new routines as well as gradually increasing the ratio of work to play that he does. It’s only about a 10 minute trip so I still get a bit of time at home.

I can’t believe it will go completely smoothly, I’m sure he’ll still have good days and bad days but hopefully the overall trajectory will be up! Of course it will all go to pot again if we have to isolate or schools close a second time.

I’ve had a terrible meeting today 😒

This autism specialist went in to assess ds for 4 hours, I had to meet him afterwards. He’s a top bloke apparently, he gave me his card and I’ve just looked him up, (he’s v popular and deffo a specialist in this area - the school have paid a lot to get him in today so he’s legit etc) I said he was an autism outreach support the other day but that’s not what he is he’s something else some sort of child phycologist specialising in send i think? I’ll have to read the card again!

I don’t want to write too much as it’s really shocking, it’s made me feel like absolute shit! but basically he said he’s very concerned ds is using lots of violent language, I’m going to snap your neck ds apparently (!) said to this bloke today. I’m going to break the bones in your arm and what would happened if I snapped your spine. Ds never ever speaks like this. I’m not sitting here with the wool over my eyes making ds out to be a saint, he’s not, he’s badly behaved at the best of times, I regularly document it on here and have no shame in what I say that he does, but he DOES NOT speak like that.

The what would happen if your spine snapped I can believe because he asks such random inquisitive questions but not in a violent nature. He doesn’t know what violent even means? He says to me what would happen if mummy’s eyes fell out and random things like that.

School said he’s never spoken like this before...

Apparently ds is also showing signs of sexualised behaviour (grabbing his 1-1 boobs all the time & today apparently he put his hand in between her legs) he’s grabbed boobs forever we are always telling him no don’t touch boobs etc but the way he’s made it into a big deal I don’t appreciate, ds is socially inappropriate 100% I absolutely agree! I just thought that was part and parcel of autism (although not a part I’m happy about!) but he doesn’t mean anything by it he doesn’t know what sexualised means! he doesn’t even realise what’s between a woman’s legs if you know what I mean ffs. He always climbs on you and touches you but not in a weird sort of way. They said obviously he cannot be doing that to children. (Obviously! Him not doing it at all would be a start!)

He has very strong signs of PDA. tell me something i don’t know.

Definitely severe adhd, tell me something I don’t know!

Severe behaviours associated with autism spectrum disorder.

He gaslights a lot (he actually used the word gaslights I’ve only ever heard that before on mumsnet) he is very controlling, very anxiety driven.

He swore a lot today, school said they haven’t heard him swear for months but today he dropped the F bomb quite a lot during his assessment. How convenient.

During today he had to have 3 members of staff on him keeping him and others safe, he said the staff are completely drained by it. So I said, imagine getting paid £9 an hour doing it for a few hours and being able to go home from it.

Other stuff, loads of other stuff!

He’s basically writing a report of ALL of that to the local authority and specifically stating ds needs specialist provision immediately.
It’s not safe for him or others in a mainstream environment etc. He repeatedly said he is mentioning the violent language and sexualised behaviour as this is way out of a mainstream schools depth of how to deal with it! He made it sound like it was an ongoing issue when it’s the first me or the school have heard about it...

I’m just hoping the special school take him now he’s been made to sound like Michael Myers, honest if I don’t laugh I’ll cry.

I said to the head i hope you don’t think ds is seeing any violent behaviour or violent language at home?? Because honestly he never has, she just said no we don’t think that, she was fine and just said she would keep in touch.

Just paranoid the social services will be knocking! Well they’ll have to knock, I can’t help what ds does or says! Dh just said the social worker would visit and ds would probably grab her tit within the first 5 seconds that’s just how ds is!

Also Dh said he’s had a busy 4 hours doing all that today hasn’t he, just timed everything right for his assessment, I mean we have reason to be sceptic don’t we?

I’m dreading reading that report, blardy hell! 😡

He wasn’t horrid with me or anything he was nice btw he was just very matter of fact and said if I upset you it’s not my intention and he was shocked ds was even in a mainstream school.

He said I’m coping with a lot and I can’t continue doing it single handidly, also wrote the name of a few books down, I had 2 but 2 I didn’t have and he gave me info for some behavioural intervention, he gave me the name of someone to contact not that far from us.

And I asked him for a copy of the report and he was a bit like it’s a school document to which the senco said it’s her child if she wants a copy she can have a copy.

Anyway this is all going to the LA for the panel on the specialist school. So we will just have to see what they say next 🤷🏻‍♀️ Although they all seem to think the La will have no choice once they read this and it makes me think is this why he was drafted in today?

Whatever! If ds gets the provision he needs then that’s all that matters.

Ds broke his 1-1 expensive glasses today, I offered to pay as you do and this guy said no it’s not for you to pay for them the school have insurances for this kind of thing.

Sorry, me again!

Done a bit of googling and in normal 6yr old children, speaking of killing / hurting etc (violent language as he called it today) is considered within the realms of normal (well not normal but not really concerning!) read quite a few threads from parents of 6 year olds saying my 6 year old is talking of killing etc not that ds said that but you get the idea, spoken to my friend who has an NT 4yr old boy and she’s like god you should hear some of what he comes out with.

Also touching boobs etc while not ideal, isn’t being inappropriate (well it is, but not how it was made to sound) it’s because he doesn’t understand personal boundaries given his diagnosis etc. The putting his hand between leg thing I’ve thought about it and it’s probably just he’s not realising where his hand is, not pre meditated oh I’m going to touch her there kind of thing and even if it was the latter it’s more curiosity given he’s years younger than he actually is.

I’m feeling pretty cross tonight as ds is being made to sound awful. The senco looked quite embarrassed when this guy was talking to me, maybe because she understands ds and it’s the first time he’s met ds? I don’t know.

Not obviously brushing anything under the carpet and will address things that need addressing, he does need to learn boundaries and things (difficult to teach with ds but I do try) but I’m not liking how a 6 year old with complex needs is being made to sound, Dh isn’t very happy either.

Oh Danni that's so tough. I agree with you that the touching is not sexualised behaviour it is a complete lack of awareness of appropriate boundaries and personal space. DS is similar, more in words than actions, e.g. he told my (fully clothed) Mum that he liked her nipples! Does your DS have formal diagnoses of ADHD and PDA?

DS is being v difficult around roads at the moment. He refuses to hold my hand and keeps running up to the edge of the road. I think just to try and get a reaction. I have misplaced our 'lead' as DS calls it so have just ordered a replacement. Hoping it arrives in time for picking up time tomorrow.

Dimples no he doesn’t have a diagnosis of adhd or pda the adhd he’s just waiting for but because of lockdown nothing has happened for a while, I do have reports saying adhd though he just needs a formal diagnosis and then medication. He just has an Asd diagnosis at the minute. Today he said he’s writing pda & severe adhd in the report so suppose it’s more evidence in a way.

Pleased to hear about the nipple thing 🤣 makes me feel better knowing it’s not just ds.

Totally agree with the comment you made about the personal space thing, he has like zero understanding of being appropriate.

He ate a ladybird in the garden Saturday, actually chewed it up and swallowed it, can you imagine had he done that today he would of probably been reported to the RSPCA! 🤣

Do you use a wrist strap? We bought one from boots. When ds used full reigns he used to crawl on the floor in them like he was a dog x

Yes, a wrist strap. We haven't used it in a while as he was getting much better about running away, grrrr

danni I’m so sorry you had such an awful meeting

I hope you are feeling ok today. I’ll write properly later