Primary school auties: summer and the new academic year - thread 7

[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

Good news, we all tested negative. Bad news, I have been vomiting. Really hoping that I can take the children to school/nursery, call in sick and go back to bed. That would be wonderful

Hope you feel better soon dimples.

Ds has had a v bad morning in school today, he’s hit teachers and threw 3 chairs at his 1-1 and picked a small table up and threw that too. He wouldn’t wear any clothes and has been naked and refusing to get his clothes back on in school and he’s had to have 3-1 support this morning 😞

He was playing up in the taxi there and back and hitting his escort and trying to get out of his seat, screaming etc.

The taxi when she got him out was like has anything happened?

God that grinds my fucking gears when people ask that!!!!!!!!! Why would that mean something has happened at home because he’s having one of his days. I take it really personally. Especially when it’s coming from somebody so bloody inexperienced.

In answer to the driver, I said was he ok when he got in the taxi this morning? She said yes, (he was fine) so i shittily said, that’s the answer to that then.

I had school emailing me yesterday afternoon about him swearing yesterday morning, he’d been saying ‘fucking’ most of the morning.

What exactly do they want me to do about it? wait at the front door and greet him with a bottle of washing up liquid?!!

I usually find when DD is inexplicably worse it is a sure sign she is brewing some sort of illness.

Sorry he's had such a difficult morning

Sorry to hear that danni. Has anything changed? (Don’t shout at me, I just mean like mum of send is he poorly, going down with the snotty virus they all have at the moment, worried about anything in particular? Poor nights sleep?). Hope tomorrow is better. He’s been doing well so maybe this is just one bad day.

Dimples, hope you are feeling better!!

Open, DS is on a roll that’s great news! When you say he’s played nicely with children, can I ask/ pick your brains… did you specifically do anything to help that skill? DSs revised EHCP includes the immortal words that he wants to do his own thing regardless of whatever anyone is doing and that’s true to some regard. It’s hard to know if that’s a social flaw or he just wants to do something different. Most of what he wants to do tbf are things he would do alone. How did he improve his interaction skills… bearing in mind DS can’t speak?? He watches other kids and will smile at them but then just wanders off to do his own thing. Has no idea how to interact with them!!!

Well he refused to go in the building this morning, but there you go. Hopefully better tomorrow.

danni possibly he's coming down with a bug of some sort? As you say, sometimes he just has difficult days. You must be fed up with all the comments

carrie these are children of an NCT friend, so he's known them all his life. Still it doesn't always go well. Ds' main issue at the moment is being receptive to what others want to play when it's not something of his choosing. Sometimes he will get upset or cross. I just keep talking to him about what he can do in these circumstances.

I'm no expert, but in your situation I think modelling is the best thing you can do at the moment, and this is what school should be doing too. Even though he's non-verbal, I would model what your ds might say too. If you are having play dates with other children then my tips would be to keep them to no more than an hour, perhaps have them more structured with an activity for everyone to do so there's less unstructured time and model simple ways he can interact. You might want to look up Identiplay techniques. It's quite formulaic but it might give your ds some skills he can then apply elsewhere.

dimples I hope you're feeling better and got some rest.

Sorry to bore you all again with my never ending list of issues, it gets me down reading it all so sorry to offload to everyone else who also have their own problems.

Ds teacher phoned me this morning to ask if ds has been taking his medication, obviously he has, so he said ds has had the worst week in school he’s had and they are really not managing ds needs and struggling to keep him and the others safe, he’s broken 3 tables / 2 chairs, pulled the pipes off the wall and broken the plumbing in the class toilet and now the toilet is out of action until a plumber can get in, he’s urinated on a staff member this morning, been hitting the staff, very hyper and been unable to calm him down. He’s throwing everything he can get his hands on and is breaking multiple things, Long list of things really.

He said they can’t continue having ds in school when he’s behaving like this as he’s requiring too much support and he’s really affecting the other children.

He asked me to phone CAMHS and request to increase his medication or up his dose, I said I had an appointment next week anyway so I’ll take him to that as planned as it’s a face to face appointment and I find this easier than getting a secretary to pass on second hand information on my behalf.

He said at the minute they cannot even think about increasing ds hours from 2.5 a day until they are in a better place to meet his needs.

He had a new taxi escort start this morning, the other left again yesterday without warning, he’s on his 3rd escort now since June..

Sorry forgot to add in reply to Carrie / mum of send, he’s not poorly or anything, sleep and everything else as normal for him.

It’s just ds being ds.

See he’s badly behaved at home, but honestly I can totally manage ds. He’s regularly having to have 3-1 support in a specialist setting at the minute, but I could do him with a blind fold on, and i look after him and run a house at the same time on my own all the time.

Its that what annoys me, they are paid for it, I am not.

I foresee a stint of ds being school-less on the cards!

I'm sorry to hear that Danni. As I think Dimples said, don't apologise ever for posting. Its good to offload and to get hopeful support from others.

I don't know anything about his meds, but he's had some good days hasn't he? Is it possibly that this just isn't the right level of meds for him? Its good your next appointment is so soon, I'd really be pushing for some thoughts from them - do they think its not the right level, or possibly not the right drug? I have said this before but I know from talking to DS's epilepsy drs over the years that some epilepsy drugs can make things worse, crazy behaviours, depression, or just not control fits. Others still under the umbrella of anti seizure drugs work totally differently and have different results. The brain is so complex and they (the Drs) should understand what's happening (or not happening) and why.

I think there is an inclination (with epilepsy meds too) to start as low as possible and on the drug that is as cheap as possible. And that's sometimes OK - epilim works for DS on low dose. But its not always the answer and I've read stories of loads of parents of kids with epilepsy who have had to try 3, 4, 5 different ones before they get the "right" one.

I'm sorry if this is a stupid thing to say and I admit I'm probably completely off course here (I've put my foot it in with Open before on this subject!) but as he is so verbal can you not extract any information from him as to what is wrong/why he is behaving like this suddenly? I admit because my own DS is non verbal and I spend my life trying to work out what the fuck is wrong that in my head I assume if I could ask he could tell. Very possibly not. But can you get anything from him that may give you any thoughts? If not ignore this paragraph.

Open, thanks so much for your thoughts on play. I don't think the issue for DS would be so much that he knows or doesn't know the children, its finding that "activity" that you mention that keeps him engaged and then getting the shared joint attention. I remember SALTS trying to engage him with some toy or whatever and him not playing ball and them saying if he won't engage with an adult who is trying REALLY hard, he isn't going to engage with a child.

Weirdly, he is sociable but NOT when an activity, specifically, is involved (of his choice) - so he will find me out, want to give me a hug, sit with me, take my hand, smile and me when out and about and so on - he's actually at his best when doing nothing other than accompanying me out and about (minus the café/falling over incident business at the weekend). But if you take an activity that he engages with (lets say playdough, or playing in a sand pit, or wading into the sea) his 200% attention is on that. Whether someone is with him, adult,, child, whoever and even if they are really trying to join him in that activity ("DS" Lets splash in the water" Lets mess up the sand!) his eyes and attention are purely on the thing he is wanting to do. Sometimes I think I could actually walk off and leave him in a random sandpit and he wouldn't even notice I've gone! This is where I'm at pains to see how I can get him to play in an activity that he wants to do WITH, say, DD - its like the joint attention is just not there. Anyone else's child like that?!

@danni0509 it sounds like they are handling him less well than his previous school did?

It shouldn't be taking 3 to 1, are they just doing the same thing over and over whilst expecting a different outcome? Perhaps they need to respond to the child in front of them?

@carriebradshawwithlessshoes my DD is verbal but it is nearly entirely echoliac. She recently had a speech assessment that placed her natural speech on less than the 1st centile. I think it was explained they can have speech but their ability to use it for communication can be a huge difficulty and it's really deceptive. Not sure re Danni's DS but it certainly changed my perspective on my own.

Yes, Carrie I sometimes think when we're out and about that I must appear v lazy as DS does not want me to join in or talk to him about the stones, water etc. He occasionally enjoys an audience though. My best times with DS nearly all involve getting out and about although bath story time etc is good too. I have signed DS up for a lunchtime board game club at school - he's going to love me, not! My boy is v chatty but actually getting him to answer questions or tell me what's wrong is generally not possible. He is very suggestible so if I say 'I wonder if you're worried about xyz' he'll normally just agree with me.

Danni sorry to read that. You are clearly so attuned to your DS and I guess school are still learning his triggers and what helps calm him - ironically not helped by the fact that he is there so little. I hope that next week's appointment helps.

Open I have taken a couple of sick days. I really need to go in tomorrow but I'm not sure that my students will appreciate me coughing all over them (I have tested neg for covid).

Mum of send, his school are really good in that they are highly trained. His teacher has been a special needs teacher for 20 years, I’ve spoken to him loads since easter over the phone / email and he’s very good at his job, knows his shit so to speak, he said ds has him scratching his head (or looking for the full moon as he once said 😂) all his assistants who work with him have worked at the school for years, they all read off the same page, do loads of training, have meetings and change tactics when something isn’t working, they record everything and go through it regularly to change how they manage situations, they have loads of outside agencies that work closely with them, so I don’t think it’s the school at fault, but equally I don’t want to place the blame with ds. Maybe it’s just not the right school for ds.

But I honestly think a big part of it’s he’s been so mismanaged at his old school for 3 years it’s going to take an immense amount of undoing.

He started school in 2018 hard work (even nursery age he was hard work) but nothing like he is now, I’ve never known a child be so controlling (he doesn’t even like you making the breathing noise and demands you stop, can’t tolerate anyone talking to somebody else if it’s not him, if you’re not playing to his tune 100% of the time he makes your life a misery as awful as that is to say) he was never like this before he started school. They gave him everything he wanted for a quiet life in reception / year 1 and year 2 and it’s turned him hugely controlling and then him being so anxious feeds the controlling behaviour, so it’s a vicious circle you just can’t break. I have an old report from reception from the visiting specialist teacher and she’s advising ds school even back then to be wary of ds gentle demands as she had observed his teaching assistant giving into his demands. Then that just spiralled on and on and by the time he left ds was telling them to jump and they was asking him how high

The other thing I’m thinking about quite a lot is, there are some kids with additional needs that just cannot cope with the demands of school no matter how tailored it is to them, maybe ds is one of them kids? He’s never got on well at school despite all the support he’s had and he’s in year 3 now. Barring a few good days in 3 and a bit years it’s been mainly a negative experience.

Obvs there is the adhd side of it too but that doesn’t account for all his behaviours and I’m trying to sort the medication side out for that diagnosis. He’s been diagnosed with severe anxiety but offered no treatment for that so that’s something else I’m talking about next week.

I wish I knew the answers.

Thanks also to dimples / Carrie for your continued support x

I've put my foot it in with Open before on this subject!

I don’t recall this but am sorry if I reacted badly to anything you said. Ds is very verbal but still refuses to talk to us about some things, either because he can’t explain or because he doesn’t feel comfortable doing so for whatever reason. It’s frustrating at times but there must be a logic for him.

With your ds, I think those scenarios are not surprising because it’s a sensory experience and is something that’s going to completely capture his attention. I guess all you can do is start very small and build slowly if he responds. Have you looked at the attention bucket?

Ugh what a nightmare Danni, it must be so frustrating for everyone including ds. What would be the option if he wasn't at school? You'd have to find a way to get respite.

Hope you're feeling a bit better dimples.

I think joint attention is quite a hard thing to learn Carrie. Ds still struggles if we try to structure an activity But will happily play with his sister for ages if it's his game or he's excited by what dd is doing.

Mumofsend that's interesting about the echolalia. Is it relevant to the situation or random? Ds's language used to be entirely echolalia. Now it's more that he repeats phrases because he wants a specific response from me but that is separate from having a 'conversation'.

danni I’m so sorry. It sounds like CAMHS need to be offering him support for the severe anxiety alongside working on the medication side of things. The school will back you up on this. Has the OT seen him yet? He is very sensory seeking so maybe they can help with that?

What sort of environment do you think would suit him?

Oh it was nothing Open, I think I just said something blasé like well why can’t you ask DS what’s wrong in the context of school (but I do have rose tinted glasses when it comes to speaking. DS has been home from school for an hour and has not stopped sobbing, he’s a cold but really this is very extreme behaviour!! He’s been fine at school, I would give my last penny to just be able to say what’s wrong and get an answer! I can’t help if I don’t know!!)

I haven’t heard of attention bucket, what is it?? I’ll google later, thanks for the pointer xx

Hi all. @danni0509 what a stress! At least the school seem to know what they're on about but how stressful. It sounds like he's really anxious there and it's coming out as aggression? I wonder how else they could help him feel more in control?
On the topic of speech, DS used to be very echoaelic but now less so although getting him to answer direct questions can be tricky. He also gets confused about time and when things happened.
I wonder about the school thing too. DS has 3 weeks where new school were amazed how well he settled etc and then typically the anxiety from the demands had built up enough for him to start his silly behaviours etc again as he couldn't cope. So now they're giving him some more choices and control, which seems to be helping apparently (well, yeah!) But if I HE, I would worry about him ever developing his emotional regulation, and I think we'd end up being too reliant on each other.

I generally find her one of the most irritating women on the telly but the story in the press today about carol/ cam vorderman was a nice one. The unmanageable, unteachable child…

Magrat I’m sure you would find strategies to help stop that happening. Hopefully it won’t be an issue unless you want to HE.

carrie I hadn’t seen that story. How sad for the family that he was treated so badly. The attention bucket is a technique used by specialist teachers/SALT to help develop attention and following an adult led activity. You can find videos on YouTube.

Ds went into school today and had a good morning. We met a friend at the park this afternoon for a couple of hours so he’s quite tired this evening.

Ds language was also exclusively echolalic for years, but he got very clever with it, used to use exact phrases at the relevant times, I always could think in my head exactly when / where he’d heard it and from what situation. He still uses it now, but can talk more normally now, you still can’t really have conversations with ds, it’s all very one sided, it’s more me asking him carefully worded questions to retrieve information or him giving demands / statements, there’s not really any back and forth, he has a lot of stock phrases he uses.

If people ask him if he’s ok he says im good thank you even if he wasn’t ok he would say im good thank you, because that’s his learnt answer to that question iyswim. He does that often.

Also this sounds bizarre but I know ds style of speech, how he speaks / what he does and doesn’t say, so if the taxi says he said x y or z on the way home Im thinking bet you he didn’t!

My dad took him in the garden with his binoculars a couple of weeks ago, I was making a cup of
tea in the kitchen, when I went out my dad said he said such and such, me and Dh looked at each other and just smiled, as if to say no he didn’t, I know it sounds strange but we literally know him inside out and he is so predictable in the way he speaks we know what he’s capable of saying. Hope that makes sense!

Magrat ds does the confusion with time / when things happened, Interestingly ds school say he isn’t aware of time but has an internal body clock and knows roughly when things should be happening. Thought that was quite smart.

Open I’m glad he went into school and enjoyed his time in the park.

I played a few games of connect 4 with ds at bedtime, he hasn’t a clue how it works but made me smile anyway, he wanted half yellow counters and half red 😂

He said mummy I wan I wan (won) no ds you didn’t but I’d like you to go to bed so yes you wan wahoooo ds! Now go to sleep 🤣