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.

So glad to hear that @Leafywool. At least the week isn't going to end and leave you stewing over the weekend. I really hope they can get it. And maybe go prepared for DD to stay if you can get her in with you. It would be better than having the weekend building everything up again. Really hope this week has just been a glitch/misunderstanding from the settings end. Thoughts as always with you and DD.

Well done @Leafywool , that sounds positive. Fingers crossed for you both tomorrow.

Thank you for your kind replies.
@Luddite of course I didn't think that you were calling DD stroppy but meant that it will look that way to some...The Head of Year has offered DD a concession of having access to a laptop so she can keep in touch with family when she is anxious. It's a good compromise, I do hope she'll buy it but I don't hold out much hope. I think your point about children on the spectrum being very upset about any perceived injustice is a good one, I had never realised that, although it's very typical of DD. DD is not diagnosed with anything but the Wellbeing person at school thinks she has Asperger's. I think she has ADHD. Does anyone know how we get a private diagnosis? Who would we contact? An educational psychologist? DD is convinced she has dyslexia but preliminary tests have not indicated that.
@Peony her current plan is to continue at college post 16 to continue with her vocational subject but she must get a level 1 to do that. If she does this she can take/retake maths and English if necessary. However if she doesn't go in to school this can't happen so we need another plan.
It seems so ironic they are going to suspend a child struggling to attend school in the first place!
I don't know what the implications of suspension are, so need to request a meeting with the school.
I think DD may not want to do the GCSEs as she knows she's unprepared and doesn't want to fail. She only needs to scrape a pass in Maths and English really, I wish she could see that!
We have a phone consult with a GP towards the end of the month as DD suffering from really severe PMDD which isn't helping school attendance. So we are hoping that birth control might help. However DD has a complete mental block about swallowing any pills!
@Leafywool I do hope your meeting went well! It's frustrating when the school has measures in place that could help your DD only for it to be difficult for her to access them or not even be told about them!

@IAmNotALooninteresting you say that about PMDD as I’ve read recently that a high number of autistic women also suffer from PMDD. My dd is younger at 12 but we went private for diagnosis after CAMHS refused to assess due to ‘insufficient evidence’ 🙄 I believe my DD would have been diagnosed with Aspergers if the term was still used as a diagnosis so she’s possibly quite similar to your DD. I’m not sure where you are situated in the country but I can highly recommend Axia in Cheshire for private assessment if you’re anywhere in the North. They do multi-diagnostic assessments for children so it would cover both Autism and ADHD (possibly Dyslexia too?). But the reason we chose them is because they specialise in diagnosing girls since they present so differently. I’d highly recommend doing some research and finding a place who are clued up on neurodiversity in girls as it will make a huge difference. It was expensive at £1750 (this was in 2024 so not sure of price has gone up since then) but 1000000% worth it.

Thanks all for well wishes for our meeting. I think it went really well.

The staff there are really so lovely. I think there were a combination of things which unfortunately went wrong on Monday so we got off to a bad start. The head of KS3 was on a training course on Monday and she apologised profusely as things should have been handled differently. It turns out DD accidentally ended up in the wrong English class somehow (but funnily enough English was the one thing she said she really enjoyed on Monday).

We had a good chat and they went through the timetable and explained exactly what to do and how to access various things. Then took us around the building and showed dd exactly where each classroom is and we got to meet every teacher too. She’s now very clear about where to go and what to do if she needs help or needs to go to the quiet room etc. They said they are planning to introduce colour coded cards for each student to place on the desk during classes - so for example green means they are happy, red means they are struggling and need help etc. Which I think will work great for dd as she can sometimes find it hard to advocate for herself and will just mask to get through the day.

They said to go home and look through the timetable and if she wants to start with one lesson a week then build up to the rest that’s completely fine. But we got home and dd said she is happy to go to them all now. I am dubious as she does have a track record of saying this then when it actually comes to it she’s really anxious and I can’t get here there, but we will see.

Overall we feel much better about the whole thing. I think it will take some time for dd to get her head around the fact it’s not the same as her old school (in a positive way) and she will feel more comfortable if she gives it a chance.

@Leafywool I am so pleased to read your post. That sounds much better. Hallelujah.
I looked at the time and it was 9.15 I thought about you both then nipped out and forgot my phone. I'm so relieved to read this!!!
I hope you all have a better weekend at least. And I hope it helps DD feel better about herself.😄ps. I'm not great with emojis so picked that one to mean let's have a moment of happiness.x

@IAmNotALoon you only need it to be a NICE compliant assessment & report, it doesn't need to be from an ed psych. There are a lot of private assessment centres now. We started with ones that were on our area's right to choose approved providers list,. I wanted to make sure it was "as good as" an NHS one. But actually some of those who don't work to an NHS budget are probably better. In our experience "something like dyslexia but not quite" turned out to be autism, possibly AuDHD. One thing to note, though, is that schools (and exam concessions) should provide support to meet need irrespective of a diagnosis. I don't think any help DD got at school or college required the diagnosis, though it's been useful for her psychologically and for uni.

The teacher's suggestion of the laptop sounds very clever to me - a good sign perhaps that they are listening to her and prepared to be flexible. Totally share your concerns with suspending a child who is struggling to go to school though. And needing to pass Level 1 for college sounds a bit odd. I wonder if there is any flexibility in that given so many students must not have the chance to study the subject in KS4 at all. Repeating level 1 or 2 is completely normal at our local vocational college, mainly driven by whether they pass maths or English resits.

@Leafywool that sounds so positive. I bet she can feel the adults around her cooperating to make her comfortable and meet her needs, which must be so reassuring for her. Sounds like you are doing a brilliant job.

@Luddite26 how are things in your family? Is your older home ed lad coming up to any exams or is he not in that space? How is little one getting on? Hopefully you can get some nice trips out with the weather warming up.

Missing the Mark is apposite today

Thank you @Piony yes he is y11s and has been attending college one day a week since.september 2024. Hated every minute but nearly at the end now. Hopefully he will get a good enough grade in maths and English to not have to repeat next year although there is no revision getting done.. He is doing an apprenticeship with a civil engineering team he is happy enough which is good.
The 7 year old is doing ok thank you. Struggles to settle down to do what he doesn't want to (PDA) gets quite a lot of nervous system reactions he describes as skin popping (goose bumps/shudders). We are just trying to build solid blocks with English and maths and just loose general learning rather than following the national curriculum. Learning geography through animals for example which he is obsessed with. If he feels under strain it just doesn't go in or he write backwards like Leonardo da Vinci. We have got back on with a few trips already since the rain finally stopped a bit! He has a long list of zoos to visit and obsessively searches which animals are in which zoo and informs us of all the babies that have been born! He's learning to live with himself as much as anything!
Living the imperfect life!

@Leafywool and @Piony thanks for the advice about what sort of assessment and assessment centre to look for. Axia sounds great but probably too far from us but I will look for something similar. @Leafywool I am so glad your meeting well today, ithe outcome sounds very positive. It's great that they are giving your DD a choice to start with one lesson and build from there.
My DH is disagreeing with me a bit about our approach. He doesn't want me to talk to DD a bout a contingency plan for next year as he thinks that she will get the impression that I think she is going to fail (he has a point she does seem to get hold of the wrong end of the stick sometimes). Anyway she seems happy enough tonight and thinking about the motorbike she wants to get (the thought terrifies me to be honest!).
She is cross with the head as he told her she wasn't the sort of pupil they want in school (or at least that what she thinks he said). The other teachers like her though. I can appreciate the head has a very difficult job but he does seem to have the wrong approach sometimes and DD says he has been heavy handed with some extremely vulnerable children. She also thinks the other teachers are not happy about his approach. But this is DD's perception of course.
@Luddite26 I am very intrigued by you DS's mirror writing! It sounds like he is very clever. I had a friend as a kid who trained herself to do this but it didn't come naturally, (although she was very bright).

I think @IAmNotALoon your husband has a valid point but I always think fail to plan plan to fail.
It must be hard caring for your mum and being out of your normal life. Your DD sounds like a warrior. These head teachers are business folk nowadays more than human resources. My head at secondary had been a prison governor! But he was firm but fair and kind that's what kids need more kindness than rules.
GS mirror writes when his head is a whirlwind or a bit anxious. He's left handed and hates writing so I'm glad he's going at it in his own time and not feeling bad . I have given him his own licence! Pencils and wooden things make his skin pop!
Sending everyone positive weekend vibes.x

@IAmNotALoon we used here for DD and they were great https://www.thenookclinic.co.uk/

@IAmNotALoon your DD is showing such resilience in dealing with those words from her head teacher. So many kids would be crushed by that.

@Luddite26 what lovely updates on both your boys. The apprenticeship sounds like a great path, best of luck for him in his maths and english. Fascinating that the mirror writing is stress related. DD (very ambidextrous leftie, late diagnosed autistic) used to do big chunks of mirror writing though I never connected it with her feelings. I like to imagine there are other universes out there where people can choose to write either way round and the whole population just learns to read in both directions. The left to right convention is nothing more than tyranny of the majority.

I saw a video by an autistic adult recently whose special interest was clouds. He did a degree in meteorology and was working as a research scientist studying clouds. How beautiful is that?! Animals is absolutely an interest that can lead into a fulfilling job for DGS one day, if it continues to be his passion. And if not there will be another path.

Thank you @Piony for your kind words.
Left handedness definitely makes school more challenging especially in the earlier years.

@Leafywool how did the start of the week go?
@IAmNotALoon how's things with you and DD? Any news or changes?

Finding some comfort on here in knowing that DH and I are not alone in our struggles - it’s so incredibly isolating as parent of neurodivergent kids. Mindful that the start of a new term is such a tricky time to navigate and hoping that everyone is doing OK.
DS (15) didn’t make it in for the first day of term today which came as no surprise. We’d emailed school about the possibility of being able to sit GCSEs from home - it’s a resounding no as he’s always managed to sit them in school before and the exam board require evidence of historical need for alternative provision. We have explained to school that DS is extremely demand avoidant at the moment and very anxious about returning to school when things are at fever-pitch over GCSEs (it’s an academically selective school to make matters worse). Days off school intensify his guilt around letting people down which in turn then derails what little revision he is able to do. The SEND lead replied that they would like him to be encouraged to attend school as he’s missing out on revision support - like we’re keeping him away for sh**s and giggles.
DH managed to persuade DS to go out in the car with him to school and back this afternoon which is progress of sorts. DS has pledged to do a half day tomorrow but it seems unlikely. If DS doesn’t make it into school before exam leave starts in a couple of weeks, I fear he’ll struggle to make it in for any of his exams given how overwhelming it will be seeing everyone in the pressure of an exam situation, having not been in for 2 months. He’s steadfastly wedded to the idea of remaining at his current school for A-levels so the idea of sitting GCSEs elsewhere/at a later date would be devastating for him.

So sorry to read your post @amr78.
I'm not clued up on what is available for your DS to be able to sit exams but I would take him to see your GP for his anxiety.
I had a friend who supported her DD/dragged her through year 10 to her degree using Bach's Flower Remedies - I'm not joking they seemed to help at the worst points. I wonder if something like that or the over the counter tablets called Kalms might help at all?
You can all only do what you can do. The anxiety your son is going through will counteract any revision support he would receive in school any way.
School will have to come up with a better offer before long.

@Luddite26 thank you. He switched from methylphenidate to Atomoxetine a few weeks ago as the prescribing pharmacist thought stimulants might be worsening his autistic traits but I can’t say the switch has made any difference. Based on prior experience I don’t think our GP will be in the slightest bit interested in supporting, particularly as we’ve had to resort to a private prescriber for his ADHD. Bach’s flower remedies worth a try though. Might take some myself!

I'm sorry that you must feel so isolated. Can you speak to who has prescribed DS's meds about what he is feeling like right now.
I hope you don't think I was being flippant with the Bach's sometimes it's just desperate measures.

@amr78 reading your update sends me straight back to DS's exams last summer, that cold sicky feeling of dread taking him in on exam days. So many hours in between when everyone else it seemed was in school and/or revising.

It feels like a mountain to climb but keep reminding yourself they have all done most of the work already. At this point whichever of school or revision feels easier is the icing on the cake, and the other one is the cherry on top. Bright kids who have been well taught through most of the 2 years have a lot in the tank already, as his Jan mocks showed. DS didn't have that privilege, he missed most of his learning time through in Y10-11 but still managed to get the grades he needed for A levels. So there is hope.

Do you think it would actually be good for him to go into lesson at this point? DS wouldn't have coped with that at all. Inevitably there would have been some talk or pressure or expectation of revision and I reckon it would have been counter-productive.

If you haven't already, perhaps look up JCQ special consideration rules wrt getting a grade awarded on the strength of one paper if he is unable to make it in for the other paper. See if there is any documentation you can get in place now to make the case easier to prove, should the situation arise.

@Piony we’re going to see how today goes but have a low threshold for canning the idea of him being back in school before exam leave starts. Definitely need to try and take some comfort in the learning he’s done to date and just keep our fingers crossed that he’s able to make it in for the exams. I have had a look at JCQ special consideration rules and the most he would qualify for, assuming he were to qualify at all, would be a 3% uplift which of course may be enough to cross a grade boundary. We’re going to speak to the GP this week purely with the intention of getting his recent struggles documented in his medical records in case we do need to submit evidence.

Thanks for asking @Luddite26. She went in ok on Monday, just for her English class. Then Monday evening had one of the worst meltdowns she’s ever had - it was truly awful. I eventually got her to sleep and got in my own bed and then I just sobbed and sobbed which then turned into a panic attack which wasn’t very nice. I totally get that feeling of being isolated, I feel like no one gets it as on the surface dd just seems like a ‘normal’ 12 year old. I spend a lot of time thinking about her old primary school friends and feeling resentful of how easily they can go and enjoy school together and go to clubs, go on days out and holidays with no issues. Which I know is so awful as comparing in the worst thing I can do - and I should be thankful things aren’t worse for us, as they definitely could be. I am completely drained and worried as I start my new job next week but she relies on me so heavily. Thankfully I have DH and he has been reassuring me that it will all be ok (he’s taking over the drop off and pick up etc) but I still worry.

She was due to go to two lessons on Tuesday for maths and English but we agreed she can just go to English. I’d rather have her there for an hour than not at all. On the drive there I managed to unpick part of the issue with her, and it’s the 10 minute break time between lessons. She is really struggling with the fact she doesn’t know anyone there, and I keep trying to tell her she will definitely make some friends but she has to be there to do that. They have three options at break time - they can go in the big room where they usually do games etc, go in the quiet room or one of the teachers leads a short walk around the park. When she was there last Monday for break she chose to go on the walk but everyone was in their little friend groups so she struggled with that. They aren’t allowed their phones and I think if she had her phone to scroll through and message her other friends at break it would have helped. I have suggested to her that she can take a book or a notebook to do some drawing so she’s ‘doing’ something at break and not just sat waiting around, which she seemed to like the idea of. So next Monday when she has two lessons scheduled we are going to try that.

But positives so far are that she came out really happy yesterday after her English class. She told me that they played Wordle and the word was ‘bullshit’ so the teacher had to shut it down quickly when she realised 🤣 And she said her tutor took her out of class to check in with her which she said ‘I really appreciated.’ Her tutor sent us a message in the afternoon with some feedback from her english teacher saying she had done some beautiful writing and contributed so well to discussions and that she was doing a fab job so far - so that was nice.

It’s a bloody rollercoaster at the minute. I felt so much despair on Monday night then after how well she did yesterday I feel slightly ok again. She is due to go to her first maths lesson tomorrow so hopefully that will go ok as she’s not been to one yet. We met the teacher last week and he seems really nice, so fingers crossed tonight and tomorrow morning goes smoothly 🤞

@amr78 Really sorry you’re going through this too. I can’t imagine how even more stressful it must be when exams are involved. I 100% get that feeling of isolation - it’s so difficult. I have taken so much comfort from this thread and wonderful posters who understand and take the time to give such brilliant advice.

What the SEND lead said is laughable. We had a similar thing with DD’s school about encouraging her in, and I said it’s not like I’m keeping her off for the fun of it!

@Leafywool well done DD for managing English! The load all 3 of you are carrying is huge. What she said about the break makes so much sense and does sound resolvable with the right support from school. She's there because she can't do it all herself, so needing to ask for more support than her peers get is pretty much inevitable.

@amr78 what the SEN lead said reminds me of when we were looking round sixth forms and a physics teacher mansplained (teachersplained?) to me that students have to be in the classroom at all times otherwise he can't teach them. Absolutely no insight that if the student is not managing to stay in his classroom, maybe there is something he could do to help with that. Still it was super helpful for us in deciding it was not the place for DS. Sounds like you are doing a great job of getting your head round this all and giving DS the best support he feels able to access.