Primary school auties step into Christmas and the New Year - thread 8

[openupmyeagereyes]

New thread.

This is the continuation of the thread for parents / carers of autistic children / children with additional needs. Most of us are parents of children in year 1 / year 2.

Links to old 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

Thread 5 - www.mumsnet.com/Talk/special_needs/3953023-Primary-school-auties-summer-and-beyond-thread-5?pg=1

Thread 6 - www.mumsnet.com/Talk/special_needs/4166833-Primary-school-auties-spring-2021-and-beyond-thread-6?pg=1

Thread 7 -
www.mumsnet.com/Talk/special_needs/4303826-Primary-school-auties-summer-and-the-new-academic-year-thread-7

He’s refusing to go to lots of places so I’m fed up in general with having to stay at home so much. He’s here all week too so it’s all rather monotonous.

Didn’t see your post dimples. New evidence? Sorry you’re feeling exhausted.

It's not really new. It is the NHS OT and the 'SEND Designated Clinical Officer' stating that DS does not sessions with an OT. The kids are on screens right now so I am going to re-read and make notes.

open I read your post as if you were sick of all the refusal. I’m not suprised!

I am too, but not for entirely the same reasons, ds goes to school and I get him out the house (although the going out is often a chore because he wants to do the things he wants to do and nothing else) but I mean eating, bathing, toilet, teeth, bed, dressing, anything at home it’s met with pure blank refusal. Bores me to death! He only does what he wants to do and that’s that. Really frustrating.

I am quite forceful though and don’t take his shit and make him do whatever I’ve said but of course that’s not good for his anxiety and sometimes I think it’s not the way to go, so I can’t win either way. I will make him do something and he is visibly stressed and anxious and then I feel bad, but then at the same time if I didn’t make him, he wouldn’t do it and it’s things I cannot let him not do, teeth for example or having a Pooh when he’s making his constipation worse etc.

dimples aren’t they utter shits! Ds needs OT and he had an OT do an assessment at school I think it was back in September, but she only advised the school he needs to use the sensory gym x amount of times per day and a few other ideas, that was literally it, she doesn’t plant to visit him again, it’s nothing regular.

It’s really disappointing that they let kids down like they do.

They are as thick as shit, pay to put the support in place early on, they may not cost as much as they are growing up.

One other thing, you are looking in to special school for ds aren’t you? Because in special schools OT is quite a big thing for all the ones I know of, and it’s incorporated into everything, so that might be beneficial for ds when the time arrives x

Thanks Danni. I am now on a waiting list to look around a few special schools and I agree hopefully that will be better.

I feel a bit better now that I have drafted something. Will probably need a fair bit of tweaking and may need to tone some of it down!

danni I am. I feel like life is very much controlled ds’ wants at the moment - it is wants more than needs, though he may not yet differentiate between the two. Anyway, it is what it is. I’m sure this phase will pass, and in the meantime, dh and I need to make sure we schedule regular breaks for ourselves. My mood is not helped by him waking at 3am again today.

dimples sensory issues aside, I'm sure most of our kids would benefit from OT to simply get closer to being LEVEL WITH THEIR NT PEERS in terms of gross and fine motor skills. It’s not like we’re asking for more than that is it? Outrageous that most areas offer nothing on the NHS.

I agree Open. DS's motor skills were assessed at 4 year old level when he was 8 and he has a massive bald patch from pulling his hair out, the skin on his fingers is damaged from chewing. I am really not asking for the moon here just professional input to help with major difficulties.

The refusal is an issue with the sensory work at home. DS is much more compliant at school so would engage with it at school and then hopefully not be so dysregulated after school and more compliant with my planned sensory diet... that is my hope any way.

Open, do you think DS is seeking a quiet week at home after his new school start, so perhaps just craving a bit of stability and reassurance/ security of home? School would be a big change for him, do you think that’s impacted just at the moment? I think you do so well, I think having anyone around you 24/7 is really hard I could say that about DD and DH! It amuses me when people say to me oh, you do so well to work well no, work is my absolute sanity, I do that for me, selfishly. I actually read your post whilst I was out for an early dinner with DH and thought about what you said about time for you. DH and I went to our local for an early tea, table booked for 6pm. Left home 5.55 and was home for 7.45. So under 2 hours babysitting. It makes such a difference to do that yet it terms of how long the Inlaws were with the kids it’s nothing really. I appreciate the kids were delighted to see their GP for a couple of hours and there was no kick off but could you try and do that a bit? Having any child with any parent whether with SEN or not all day every day is just ridiculously hard. What’s the plan for Monday, are you in for lunch/ a pm lesson? Hopefully things can extend a bit.

Dimples I thought about you too. I’m useless on EHCP provision as we were told from day 1 that we couldn’t get anything in terms of therapies not even salt for a non verbal child!! But if the worst came to it, how good is his one to one? We pay for an OT to go into school maybe once every other month or third month so not loads at all and if the one to one is with it they should be able to pick up that ball and run with it. I think you have said school is good for you, unlike ours… the emphasis everyone tells us is on how good the support staff are. I’ve said before ours are rubbish but I do think a good one could maximise the OT better. What our OT says is initially she may need to go in a bit more but then should be able to step back for months on end if the one to one is proactive and has picked up what she’s said. Hopefully you will get what you need but otherwise is this an option?

Danni your DS, I’d have been running from the bloody dog too! In fact me and your DS would have been in the road together along with my DD who assumes every dog is going to sever her right arm (no foundation for this.) Bless him, sounds like he did really well til then.

New meds arrived (non stimulants) but on hols from tues so nervous about starting anything new just yet??!!!!! Been making snowmen today, heavy snow here. Mad weather!!!

Carrie school had arranged for DS to be assessed by a private OT last year and they recommended weekly therapy sessions with OT, additional training for TA and termly reviews. After 10 months of refusing to put in any additional support the LA have added a one off 2 hour session with OT.

Oh no that’s terrible! I didn’t know that!

Thinking about your position and ours Dimples I have to say though that I remain confused. We have a school who actually says any regular external intervention indicates the child needs a SS but re budget and funding our story went like…

We say DS is non verbal needs regular external SALT in school.

School say they may agree but will not get funding for that so it’s irrelevant.

I’m up in arms, read lots on MN about how if it’s a need (how can it not be?) we are entitled. We then have meeting with LA and school, I go in all guns blazing with my reports saying DS needs SALT, has severe speech dyspraxia etc. Show reports confirming this. Senior LA guy simply says school is right we have no funding for that. He won’t get it. He can’t have it.

School say I told you so!

Knew he was moving so just paid ourselves in the interim but no one was ever suggesting that it was remotely possible (even once monthly funded SALT!)

That is terrible but I'm not surprised @carriebradshawwithlessshoes.
We had a similar fight for OT, LA just wanted us to watch videos and roll playdo ffs! It's much more integrated into the day now.
DS' taxi man asked him if he'd had a good half term and he say yes but I miss my mum already...aww so I'm smiling but then crying when he'd gone. I'm at work now and it's so quiet and still. Weather is atrocious here and my building is quite high so it sounds like I'm at the seaside up here!!

Aw bless him Magrat!! Terrible too here. Off to the South tmrw. I’m not packing my SPF 40.

You do wonder if these stories are just our school/ LA etc or typical.

Hope work is ok today.

Thanks @carriebradshawwithlessshoes.
I think our stories are the norm, sadly.

Dear x,

Thank you for your email. I note your comments but this ongoing position is not satisfactory or sustainable for x.

As I am sure you are aware x has a legal right to attend your specialist educational provision on a full time basis. You provide a specialist educational resource and it is in x s interests to take advantage of that for a full school day. I have discussed the current part time arrangement with xs paediatric consultant who also confirmed and advised that the arrangement as it stands, in his professional opinion, is totally unsatisfactory.

I have always been open to agreeing to a part time arrangement as a settling in/ transitionary phase for x but the fact that this is still in place xxx months after he started with you is completely unacceptable and not in the interests of x. We are not agreeable to this continuing.

From xxxx I shall assume that x will attend school between the hours of xxx and xxxx in line with his peers and I will arrange and adjust his transport accordingly. (Or ask them to and confirm to you Danni).

Thank you for the offer of a further discussion but other than to facilitate the above arrangement I have nothing else to add to my comments above.

Yours, xxxx

My only concern Danni would be they think fuck this for a game of soldiers, you force their hand and they suddenly say they can’t meet need to engineer him out rather than accept this. But I don’t know how you would avoid that….

I’ve reported my above post, I perhaps shouldn’t of copied and pasted his teachers email. Even though I changed the personal info so it wasn’t identifiable. I’ve asked mumsnet to remove it.

Sorry if this makes no sense to anyone not sure of what got deleted.

Just so sick of his so called ‘specialist’ school and being fobbed off with ds and his part time hours.

Thanks carrie x yes deffo will force their hand, ive been saying on here for a while it’s clear they cannot manage ds hence why the part time, and all the complaints, I would appreciate if they said this though. Rather than saying ds isn’t ready (feck off!) and having the best of both worlds, ie his funding and him only staying 3.5 hours a day. It honestly makes me feel ill all the battling with his schools I’ve had, I’d get more sense smashing my head off a brick wall xx

Thanks for taking the time to write that carrie x

No problem! I think my text is quite general so not revealing! X

Well I emailed ds teacher at 1pm, loosely based on your wording carrie (I took a bit out and added a bit in to more reflect on ds situation with them) no reply.

So I’ll give it until 12 tomorrow for a reply, and if not, I’ll phone the local authority their school is in, aswell as my own LA where ds ehc plan is in. Plus I’ll email sendiass aswell. Triple whammy.

They’ve emailed me this afternoon, regarding ds day, and on the end put swimming is cancelled for this Thursday and to arrange for the taxi to collect ds half an hour early to reflect this. They are having a fucking laugh. !

I sent that email with great pleasure earlier.

And if school want to go to war with me now, that’s fine also!

This is exactly what his old school did, soon as you point out their flaws and make a complaint and tell them you aren’t happy and that they are breaking the law, they turn bastardy in every way shape and form!

danni haven’t you spoken to the LA about his reduced hours before and they haven’t done anything about it?

Yes that’s right open I think it was October time I contacted them. Without checking I can’t be specific but it was roughly around then, so quite some time ago, and here we are almost in March in the same bloody boat.

Basically the LA said it’s not ideal but since they are increasing then it was deemed ok. And that I should talk to school again, which I’ve done numerous times, and I’m not getting anywhere, I’m unsure if you see the email from his teacher earlier? But it was just basically another fob off, saying they aren’t increasing ds hours.

I’m going to threaten my la with judicial review should they not take any action, which is what I’ll be doing tomorrow. It’s on their toes to manage ds school place, including making sure he is receiving a full time education.

I am like a broken record on this thread for years and years with the same issue, any school he attends they just will not take him full time, it’s not fair.

If you remember about 12-18 months ago ish, when his old school had that expensive specialist teacher in for him and still sent him home early! They were refusing to take him all day despite all my complaints and the fact my local authority were paying the fee of £500 per week for her being there. I phoned his caseworker multiple times and said I’m not having it any longer, they won’t take him full time. (It had been a long ongoing issue then too - suprise suprise) I said you are going to have to do something! It’s disability discrimination and they are breaching the 2010 equality act. They reluctantly got the head of send for my area to phone me since I was like a dog with a juicy bone lol, and she rang and gave his old school Merry hell. It took months and months of me contacting my local authority though. I can in a weird way understand all that with ds old school though, given they were mainstream and no way equipped to properly deal with ds needs.

What excuse does a specialist school have though, like seriously?!

I never got a reply from his teacher today, I didn’t think I would. Now to wait and see what I get tomorrow. It was a serious email I sent, no nicey nicey. (I wasnt at all rude) So we shall see!

I am 100% serious though, I will not tolerate this utter shite anymore.

When your autistic 8 year old is saying mummy why does my taxi pick me up but maisy is allowed to stay at school? then enough is enough! He wouldn’t even realise if I dressed him in a bin bag, but he picks up the injustice of what his schools do to him, it’s clearly that obvious. Poor kid.

I’m waiting for the pitbull HT to contact me tomorrow. I know that’s coming! So carrie get ready, im going to need another email 🤣🤣🤣🤣 she’s awful, she says FYI in her emails etc, she is so patronising and talks down to you like she is so superior.

And she always writes ‘we want what’s best for ds.’

No you don’t, stop lieing!