EBSA support thread 2

[Luddite26]

Hopefully this links to Brambley Hedges EBSA support thread.
A community to discuss the processes and support each other when children are experiencing Emotionally Based School Avoidance.

I don't think CBT is very good for autistic folk but one thing I did benefit from as part of the CBT I had was stopping my what if it goes wrong thinking and purposefully challenging myself to think what if it goes right?

It took months and months of consciously choosing to stop catastrophising, and I had to want to choose it too.

It's hard to get yourself into that mindset and we can't think our children's thoughts for them either but sometimes I wish I could just telepathically alter DSs thoughts. If I had the mind control super power I promise I would use it for good and not evil.

Ironically I've woken up in a bit of a panic about this meeting today so I am trying to put what I've learnt into action this morning and it's quite difficult to get past those barriers.

Good luck today @Jimmyneutronsforehead . You've got this. I don't mean that as a vague platitude, I mean it sounds like you have mastered the material and you are well prepared for putting your points across.

Thanks all, no dice today unfortunately but last night she did say she regrets throwing herself full time and I said I’d speak to school about maybe doing mornings for a bit. So I have another long email to send. Thanks for listening to me ramble on once again!

@Jimmyneutronsforehead good luck for today 🤞 Agree with @Piony that you have got this! Also interesting what you said re ‘what if it goes wrong’ thinking as I was trying to put this point across to dd last night. She was very much a ‘what if the same happens again tomorrow’ and I said that’s not guaranteed. I’ve been trying to get her to realise how amazing she did last week because even starting a brand new school without her history is no mean feat.

Thank you all so much.

I think it's the sheer volume of what I've written that is feeling a bit cringe 😬 it's only the review stage not the draft stage, but I've sent it now.

She sent me an email back saying thanks for sending me that document and I read it as piss off sending me that wall of text.

I also pointed out the other day a way that kids could elope over the fence. They've build the fence next to a tree, and also a fence post or a tree stump or something that is rooted in the ground that allows kids to climb it and get to about chest height above the fence, and was told they're aware they have told the council, but then had flashbacks to them telling me about the toilets and how the council need to sort that out but when it happens is a how long is a piece of string scenario so I've asked for a risk assessment to be done and I don't want them to think I'm accusing them of anything. I quite like being on the same team as them when it comes to school, and I feel like I might have branded myself a trouble maker or a boat rocker.

I just know as soon as DS realises he can escape, he will. I'm surprised the little boy that was stood on whatever it is was just waving at us and saying hello instead of yeeting himself over but then I have to remind myself some kids like being at school.

when mine were teens I used to love a fridge magnet that someone had on there fridge
Ask a teenager while they know it all.

Not teen bashing it always makes me smile.
I'm a gran of teens now and my regard is even lower than it was with my own ha ha!

@Jimmyneutronsforehead was your CBT adapted? It should have been. Adapted CBT can work for some with ASD. There should have already been a risk assessment, so that one should be fairly easy to let you see.

@2x4greenbrick I don't think it was adapted, if it was I wasn't specifically told so it may have been, but I've done quite a few rounds of CBT and no two have ever been the same. I've still taken some good from it, and I've been honest about what hasn't worked for me, and I think it has helped that I've kept my notes so I have been able to start new sessions saying this is what we've already tried and this either worked or didn't work or worked in some contexts. I think in much of the material though I have been too self aware for me to find it beneficial.

Ehcp meeting is done anyway. I think I put the best case forward that I could and it was just the review.

I got to explain the car park situation and they seemed understanding and think we can also get more detailed support written in regarding elopement and understanding triggers including EBSA.

I've told them we're considering transport anyway, and we're quite happy to bring him in later on days he can't manage transport but can manage school once he's regulated a bit.

We got to talk about the lunchbox, which she observed his restricted eating today first hand so that was helpful in getting them to understand we just want calories in him. She got to observe his panic when adults try to intervene as well.

She's going to go through all 22 pages of my document while she writes up her suggestions and then it'll get sent off and then it'll probably go to draft anyway so I can breathe for a bit now.

Dd asked yesterday afternoon if she could go back to school tomorrow (so today). Of course I said yes, and she was excited about it and told her new friends she was coming. She was a bit anxious last night, but it was more anxious about the fact she might be anxious this morning, if that makes sense. I’ve woken her up and she said she can’t do it. But she also said she’s so sick of being anxious and it stopping her from going to school, and going back full time after being off for so long is too much for her.

I emailed the assistant Sendco we have been dealing with on Monday, and sent another email yesterday morning copying in the specialist Sendco we had spoken to at the start but I’ve not heard anything back yet. I’ve asked if we can devise a short term plan including an appropriate reduced timetable to settle her in and specific points where we will check in and assess how it’s going.

She’s anxious about the fact they haven’t responded yet and knows the longer she’s off the harder it’s getting for her. I’m going to give school a call today and see what’s happening. Her first two classes today are PE which she wouldn’t be doing anyway and would be in the Send area, so I’ve told her if she changes her mind I am more than happy to take her in late. It would be around 11am so I’m hoping maybe giving her the time to decompress this morning might mean she wants to get ready and go in.

She really wants to go in late morning as suggested so fingers crossed 🤞 I think the fact she’s saying how much she wants to go and trying so hard is such a positive.

Does your daughter benefit from talking about separating emotions? Like, she was apprehensive, but now she is excited, or is she a very black and white thinker and all she recognises is the initial anxiety?

Some people can't separate the feelings which is understandable if it is how the brain works, but in other people it can be helpful at getting them to consciously acknowledge that 2 different feelings can coexist and so there are 2 pathways. Chase the apprehension or chase the excitement, and logically, most of us want excitement, it can just be hard understanding that is how we are feeling.

Yes definitely a black and white thinker @Jimmyneutronsforehead. I remember in her assessment the practitioner explained about primary and secondary emotions, and how many autistic people struggle to recognise secondary emotions. She’s definitely one of those people.

But my amazing news is that she is at school!!! I dropped her off at break time. She got ready with no issues and was actually ready 15 minutes earlier than needed. And she did so well as the receptionist told her students have to sign in elsewhere, and she said she was new and wasn’t sure where to go and they took her there. She also asked for help finding her form room as her friends usually hang out there. So I am really proud that not only did she go in, she asked for help twice before even properly stepping foot into the school environment. She said to me on the way there that she felt anxious but she was pushing herself to go, as she knows if she has a good day today then it will make going back tomorrow much easier for her.

Thanks for your update @Leafywool. I read all your posts together so pleased to read the last one. Well done DD. So glad she has got back in with half term looming.
It has been such a beautiful Autumnal Day in West Yorkshire I hope DD feels good when she gets home.❤️

@Luddite26 Thank you, she came home fairly happy so massive win. I feel like it’s a rollercoaster at the minute. I’ve been freezing my tits off today but I think outside was warmer than inside my old house!!

Hope everyone has had a good day today 🙏🏻

That's fabulous news @Leafywool. well done to DD.
Really hope you can have some momentum before half term.
Yes I put my winter duvet on on Sunday and am very pleased I did!🍁

We had a rough start this morning. DS purposefully wet the bed because he knew I'd have to strip it and get it in the washing machine, which I did in record time much to his dismay, then he started hitting me which he has done on occasion but it isn't his usual mode of behaviour, and then he launched the PlayStation controller into the tv, thankfully both unharmed.

We have to drive past the old school to get to the new school and he was begging to go back to the old school, and I said we've already said bye to the old school now we're saying hello to new school, which started a string of him repeating the word shit over and over until we passed McDonalds, and then he said he wanted McDonalds but a. He'd been a little shit this morning and b. It was breakfast menu and he doesn't eat anything from the breakfast menu so then he started pounding on the back of my seat in the car.

These aren't usual behaviours for him, but they're also not new behaviours. The purposeful weeing on the bedding is new, but the rest usually only happens once dysregulation has reached screaming and crying. This just felt vindictive.

He went into school fine, has refused to eat absolutely anything at all at school, wouldn't touch the snacks we took in the car for the trip home, refused to eat when we got home, and now tea is cooking but I know there's a decent chance he'll refuse that too, but he's calm and happy and regulated, he's just not my friend at the moment.

The dog also bit me whilst we were playing, completely accidentally, but because he is like a bloody pirahna so I've had my strong words with the dog so he's not my friend either.

Feeling a bit hard done by today.

That sounds really rough @Jimmyneutronsforehead . Best thing to take from it is he's had a day at school and is lashing out at you his coping mechanisms. I hope you have a good sleep(?) and tomorrow starts better for you both.💐

@Jimmyneutronsforehead I hope today goes better for you.

@Leafywool well done to your DD. I really wish I could borrow some of her optimism for mine. But OTOH mine did give her school a 7/10 for the first term so not too bad.

@Jimmyneutronsforehead oh gosh sorry that sounds rough! How did last night go? I also have a piranha dog so solidarity there!! I know you say he seems happy at school - are the not new but not usual behaviours his way of communicating he’s finding it difficult?

@ISaySteadyOn 7/10 is pretty amazing IMO! I hope you are all doing ok?

Dd made it in again this morning, on the early train!! I can’t believe it. She didn’t get to sleep until about 11.30 and I woke her at 6. She was sooooo exhuasted and said she felt anxious but I left her to decompress with no pressure. Popped my head in 10 mins later and she was on her iPad so I thought it was a good sign she hadn’t gone back to sleep. Didn’t say anything or do any chivvying to get ready and I could hear her moving around eventually so left her to it. I think if I’d have kept talking to her when she woke up she would have wound herself up and not gotten ready. It’s so hard to balance validating her feelings with gently encouraging her to get ready and go. I think there’s a very fine line between her being ok and spiralling so maybe a quick check in when she wakes up then leaving her to it is the way to go?

I had a brief convo with school yesterday afternoon and they said they had my emails and wanted to let me know they aren’t ignoring me. She’s scheduled a meeting with other SEN staff and is going to call me today. She said a reduced timetable would be absolutely fine and they have some other ideas too. Dd said yesterday that she struggles with the start of the week - so the transition from weekend to school - and thinks if she could start late on a Monday and Tuesday it would set her up for the rest of the week.

Sorry another bloody essay from me!

@Leafywool I do think it's probably some sort of communication, and I can see why he would be finding it difficult.

I've said on lots of posts that to me, hell is other autistic people and my reasoning for that is that everybody has conflicting needs, outwards presentations and behaviours. I'm sure I am someone's idea of personal hell too.

I only had to sit in the foyer for 5 minutes before the meeting the other day and it was very overstimulating and none of the kids were doing anything wrong, they were just being their happy little selves but with a set of double doors between us I could still hear the vocalisations of 20 kids plus all of the adults talking over the top of each other. DS has 2 pairs of ear defenders at school and the school also has ear defenders for kids to use as well, but I imagine with that level of noise it's hard for ear defenders to do their job properly.

I suppose I just don't know what to do anymore, because for them to say they can't meet need and no specialist provision be suitable DS is going to have to show them he isn't coping in school, but he's absolutely fine apparently once he's in there.

This morning so far, touch wood, has been fine. We're about to leave though and this is a big transition in the day he hates.

I wish you luck today. I failed yesterday.

Quick question though: if you manage to exercise, how do you manage? I would like to do a bit more but I am so paralysed with both anxiety and feeling I need to be constantly available in case children need collecting that I can't schedule it in.

I can't even have a schedule cos of this and I hate it.

Today and tomorrow and then I get a break. Half term. I am on the verge of melting down today.

Mr Motivator tiktok videos and just dance on the switch.

I can't manage the gym anymore, but I still like to do what I can when I can.

DS and I also do those virtual running and jumping videos on youtube like the spiderman or Minecraft ones.

@Jimmyneutronsforehead "I suppose I just don't know what to do anymore, because for them to say they can't meet need and no specialist provision be suitable DS is going to have to show them he isn't coping in school, but he's absolutely fine apparently once he's in there."

I know you know this but I'm going to say it anyway. "Apparently fine once he's in there" is not the definition of meeting need. Two things I go back to are Maslow's hierarchy of needs and section B of his EHCP (or draft of the new one.). If he's not able to take enough calories in on a school day, or drink enough, or access toilets reliably, or feel safe (which you discern from his behaviours going into and out of school) then no his needs are not being met. Additionally are there needs in section B that are not being addressed? is he making the progress he'd be capable of when well regulated?

There is a complication that it'll take time to settle and he's carrying an extra load at the moment with the change of school , so the early days are not a fair test of whether the setting can meet need long term. But neither is "well he seems fine while he's with us so obviously we must be meeting need."

I do think there is room for pragmatism with these things which is what makes the decisions tricky, and having him at home on EOTAS would not be an easy path for you either, but don't talk yourself out of your gut feeling.

Well done @Jimmyneutronsforehead & DS, @Leafywool & DD, and @ISaySteadyOn & DD. 7/10 is a win.

@Leafywool we have looked round a LOT of sixth forms and nearly all of them have a late start on a Monday morning. It's a thing. How clever of DD to suggest a strategy that is being actively implemented for thousands and thousands of sixth formers because it works (also I guess they get to dodge the worst of Monday morning traffic chaos, but still. DD used to love her late Monday starts.)

@Piony thank you for that post. It is very well measured and you're absolutely correct.

I don't really want EOTAS for him, he is so bright and academically able and he is desperate for connection with peers just like him and I don't want to deprive him of that.

I'm just thinking emotionally rather than logically today. Bloody stupid meat sack brains ey.

The good news is he is in with minimal issues this morning. Some tears in the car but he practically leapt into the teachers arms when we got there.