Primary school auties : spring 2021 and beyond - thread 6

[danni0509]

Hi. 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

Everyone welcome x

Danni, what a day! I think not providing a formal notice is an unlawful exclusion. I think that you need them to put it in writing to strengthen your case that they cannot meet DS's needs (if you can't find a way forward with them).

I think that they need to take some responsibility here given that they didn't engage with you at all when you were isolating. When we were isolating in November DS spoke to his 1:1 every day, not much work was done but it certainly helped the transition back.

Hi well his class teacher phoned me at teatime and we spoke for 40 minutes. I asked him loads of questions. His teacher is really understanding and very experienced at his job (as much as school are doing my head in, I can’t take that away from his actual teacher, he’s very good at explaining why ds is doing what he’s doing and reassuring me)

So they want ds to do 2.5 hours a morning until end of September at least, so the last 3 weeks of this term and then the first month back after the summer holidays to settle back in, they will then review it end of September and see if he’s calmed down and settled on his adhd medication (he hasn’t even been diagnosed yet! They are really pinning there hopes on medication, like my mum said drug him up to make him comply!)

I had to phone his taxi and book them for collection from me at 9am and he’ll be back to me for 12.30 so back to 3.5 hours respite a day again (and ds 2.5 hours education for the foreseeable) the taxi company said it’s pointless and they weren’t very happy but the manager of the company is lovely and said they will do it as they provide ds transport so they will get him there and back for me regardless.

His class teacher said that ds is having 2-1 support and the behaviours are really upsetting the support staff (why work in a special school then?!) one in particular is not coping very well with ds behaviour so the pastoral team gave her some time off today, what the actual fuck?? Does the pastoral team want to give ME some time off? I fully sympathise with how difficult ds is but they do it for a short time AND get paid for it, am I missing something?

He’s currently in a room with 2 teachers and no furniture and they’ve had to remove the table and the chairs now so he is in a room with no furniture whatsoever and just a small box of activities for his work. He keeps flipping the table over throwing the chairs and any furniture he is chucking it at the staff so for safety they have had to remove the lot. He keeps biting the wires so they’ve boxed them off and he’s ripped the casing off today.

He’s spent all morning naked and if anyone went near him into his safe space he got his Willy and lifted it towards them and urinated towards them to get them to back off.

He’s really stressed out etc. What a horrible situation.

He drives me up the wall but he must be so stressed to be doing that.

They asked me if they could contact the child psychologist that is overseeing his adhd diagnosis / medication, I gave the details and I’m more than happy for them to contact her. So I suppose that will speed that bit up.

I’ll post back later just sorting ds out.

If he is PDA then he needs a setting specifically for PDA rather than an ASC focused setting as they need really different methods.

Sorry it has been such a traumatic day :(

So ds teacher said that ds is a new entity for a lot of the staff (does that mean a one off or not usually what they would see? don’t really know what he meant but I assume it’s something like that) but for the experienced staff who have been there years they know how to handle it more / have come across similar before.

So they are having to swap him about between staff so he’s spending time with more experienced staff but also the less experienced staff can get some on the job training so they know how to handle said behaviours in future but that’s not working as he doesn’t like changing about but he’s too much to handle for one set of staff so they are relieving each other and that could be unsettling him.

He said it’s frustrating his teacher because ds is really smart and has so much potential and his teacher knows he could have such a different path but it’s getting him to the point he can actually learn the strategies to behave but to do that he needs to not be in such a heightened state all the time. So that’s when he was discussing meds again.

They said today has been there most challenging day with ds yet and the reason they phoned me was because they didn’t think it would be safe for ds to travel home in the taxi (with a harness in the back and an escort sat beside him - but ok for 5ft tall mum to pick him up alone and get him home alone, 3 hours early! so no not buying that to be fair!)

I don’t really know what else to do, other than pray

This is it mumofsend. He’s is an all round SS it’s all that was available and even then we waited months and months for a place. They said they could meet his needs and the la just accepted the place.

They obviously have experience but then they have experience of all other disabilities too. Not one specific thing.

How awful to hear all that. I hope that the school are successful in chasing up CAMHS. I think that they're earlier question re how you manage at home was really meant to reflect how amazing you are at coping with it all.

Bubbles popping all over the place at DS's school - year two, please stay safe!

Are there PDA specific settings? I thought it was a relatively new classification and not diagnosed widely yet? I may be out of date.

danni that sounds super stressful for ds and for you, you must be so exhausted with it all. It sounds like school needs to work with you on the cause of these behaviours. Just trying to manage out the behaviour itself isn’t working.

Do you have any idea what it is and what would help?

@danni0509 he needs somewhere really specialised towards his needs. Most likely you will need to look at independent specialist schools.

@openupmyeagereyes there are, just not as widely available yet and usually indy specialist so cost £££££££

danni just read your update. I think they mean that some of the staff just haven’t come across it due to inexperience.

Don’t they have a sensory space or anything he can access? He really needs to unwind in a safe, nurturing space not be stuck in a cell with nothing in it.

dimples there was a case in ds’ school this week. First since January.

Open he’s always been the same (or for as long as i can remember at least) he thrives and I mean thrives off the reactions he gets. (It’s this what they mean that’s causing so many issues or at least this is what they are struggling mostly with) so he causes loads of trouble to look for the reactions, they said it’s him sensory seeking so he’s getting a sensory buzz, but he does it constantly! He really is like the Tasmanian devil whipping round leaving a trail of destruction, It’s exhausting for all concerned. He’s one side of the room doing something and before they’ve sorted that issue out he’s causing another the other side!

He gets zero reaction, straight face / no fuss, but it DOES NOT WORK, he moves on to bigger things and often it’s really dangerous and he’s putting himself at risk. His teacher said today he did no work at all didn’t even pick a pencil up, they spent all morning keeping him from harm.

They do a lot of sensory things with him, they even have a dedicated sensory gym which he visits and lots of sensory activities! His old school did a lot of sensory work with him too on advice of the EP (in fact they often did more sensory work, than actual work to no avail) they have contacted the OT at his school but for now they are using strategies designed for other kids in the hope they help (no breakthrough so far)

Dimples good luck for yr2! And good luck for your appointment tomorrow.

Open how did your phone call go?

Mum of send nothing like that exists for miles, he wouldn’t be able to go and come home daily so we would either have to move or he would have to go away I imagine and I don’t want him away all week. The thought fills me with dread.

It’s so difficult.

But he was more settled previously wasn’t he?

If he’s sensory seeking then he needs a regular sensory diet I’d have thought. Maybe lots of heavy work would help?

mum what a surprise! 🙄

I agree with dimples, he's been off school for quite a long time and they haven't put in any work to contact you or put in a transition plan.
Of course he was going to be stressed and have challenging behaviour. I would also be annoyed that they were constantly shifting teachers around him. Surely rule number one for autism is to get children settled with a consistent set of people before swapping things around. I'm sorry it's been such a crappy day danni.
It is an illegal exclusion unless the head has authorised it and they give you a written notice. I would chase that up (if you have the energy) as it could support a move to a better school if they are not meeting his needs.

The call today was useful and the specialist teaching services are now engaged which is great. We talked through some strategies. ST is going to send the school some functional behaviour stuff as I don’t think he will engage with them via Zoom. Someone will attend the annual review and dh and I will do a call with them to discuss whether home routines can be tweaked. I’m happy to look at every angle.

I’ve been looking at the local special schools. They all say that the children have learning disabilities and I really don’t know whether ds does. The teacher is insistent that he’s 12-18 months behind apart from his physical writing. His reading and comprehension is almost/on track. I need to Google more about it.

I think if he were to move then the autism school would be our best bet (assuming they’d accept him) but I won’t know for sure until I can visit it in September.

His profile is spiky certainly but a different approach might be all he needs.

We've been in this learning difficulty debate for a long time too. I don't think DD does. Her understanding of language is the barrier, as well as her autism but when you present to her in a way suited to her her ability to learn is astonishing.

Ds consultant said he had a moderate learning disability and wrote this on a report, but I honestly don’t know. His consultant sees him once a year for 20 minutes. She never diagnosed him based on anything she read either just I think based on her seeing him. Not even sure why she decided to write it after years of seeing her.

I’ll make my own decision when he’s had some time on medication and he can start properly learning to see how much progress he makes. Having no attention span isn’t obviously going to have helped all these years.

He’s not daft, far from. Just little things he says to me, like the other day (sounds silly this example but makes me realise he’s not as daft as he makes out) Mum how many miles to Iceland? (Then before I had to chance to even open my mouth and answer) he said the country, not the shop. That might seem really small, but just made me think he’s quite switched on to say things like that.

Daft example really, but to me, knowing exactly what he’s like, that was quite a clever thing for him to come out with.

Oh gosh @danni0509 what a nightmare. I'll reply properly in the morning but didn't want to read and run. My DS is always looking for a reaction too. The 'staff are upset' line really pd me off recently too, they are grown adults being paid to do a job, head teachers often seem more concerned with the needs of grown adults rather than supporting the actual needs of the kids. It doesn't wash with me either. Also, do schools think sen parents are superheroes?? Only way to explain how apparently trained professionals are sobbing in the staff room but we're totally fine all the time?? Any strategy I've found that works came from chatting to DS and trying to understand him, not a new theoretical model etc. I think probably the isolation break has maybe confused your DS so reduced timetable might actually help but its still a pain and not right. I've looked at home ed before but I'm worried that DS won't tylhen get access to a whole host of therapies etc.
Ladies, I have been out out! Went on a train to my book club. I do feel like a new person, so refreshed with a much better perspective. Left DH to do bedtime tonight too after DS insisted on staying up.until midnight last night...

I don’t mind ds doing part time short term (ie no more than a few weeks at best) but he’s been there 6 weeks on part time already, next 3 weeks at 2.5hours then all of September on 2.5 then I’ll have to push them into keeping him longer after September or they will just keep quiet and hope I don’t mention it, it’s ALWAYS me who has to keep on at people to get them to deliver what was promised, I don’t hold out much hope for an increase after that, they seem to want it easy too. Vibes of old school all over again just from conversations I’ve had with them. Like yesterday he said ds leaving at 12 will immensely help with the staff lunches, but that’s not ds problem? And that’s what we had with old school, it’s not for ds best interest it’s for there’s!

Yesterday they phoned me at 11 to pick ds up, he had only been there an hour and a half at this point.

He kept re iterating yesterday that they can 100% manage ds and they have so many tools to use with him (I do believe they have) but when he’s got the attention span of a grass hopper he’s not able to take anything in and he needs repeatedly learning it over and over again as it’s not embedding. He said ds was using the toilet and a fly came in through the window, so mid toileting - pants around his ankles, he started chasing the fly around, he said his other students would of finished there business whilst watching the fly from the toilet seat then if still interested in the fly, would of had a look then. He said his attention span can’t even manage to complete the simplest of jobs.

I’m pleased you had a nice time at your book club x

danni it’s so stressful, hopefully he has a calmer morning today.

Ds had a good morning yesterday apparently, he’s refusing to go in today. I really can’t wait until the summer holidays when I don’t have to do this every day.

I spoke to the child psychologist this morning and she said it would be useful to have his special schools input (he had his assessments at his old school and camhs or whatever they’ve renamed it now, have had no actual contact with his new school so far) so I said yes, please do! So she said she will ask the new school to write some info up (which I know from yesterday’s conversation with the head, that will be in ds favour) and they have set a date for Friday 6th august to phone me with a decision / appointment for meds (Shameful, that’s 17 months after his referral for adhd was sent to them)

I quickly emailed his teacher to let him know and he messaged back that’s great news and that ds has had a better morning and steps in the right direction once again.

Just waiting for his taxi to drop him off now!

Open sorry ds didn’t go in, know what you mean about the summer! I’m dreading it but also looking forward to 7 weeks off the school drama.

That’s great danni. I know you’re uncertain about the medication but lots of posters on here have said it’s life changing. About your ds’ Iceland question, I think it definitely shows that he’s smart. Not only the question itself but the fact that he realised you might not have known which one he meant. It shows theory of mind I think.