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.

Fair enough. Maybe those clubs are helping keep him in school.

No easy answers.

I feel exactly the same @ISaySteadyOn - in hindsight I would have done a lot of things differently. I find never being able to show any frustration very wearing. I genuinely have the patience of a saint but it drains the hell out of me!

Hi all, not posted for a while. Things have been very ‘big dipper’ again here. I started a new job which means I’ve gone from being at home every day to in the office 3 days a week, so DH has had to take over helping DD get ready and take her to MNHES. We had a horrific couple of weeks where she struggled a lot and she barely went in, but we seem to have turned a corner the past week. She found the change in routine incredibly difficult but her and DH sat down and made a plan which includes a rewards chart and some good old fashioned bribery. It’s not something we’ve really done before (apart from toilet training all those years ago!) but it has really motivated her so I will take it. Although she does keep reminding us that she’s only in it for the rewards 🤣 I even got her in last Tuesday for the 2 lessons with break in between which she was very anxious about, but when I picked her up she said ‘I don’t know what I was so worried about!’

She had an appointment with an educational psychologist last week as part of the EHCNA and I spoke to him on the phone on Thursday. He was very impressed with how articulate she is and how she understands how her autism affects her. She did so well and it sounds like she was very open and chatty so she must have felt comfortable with him. I got the report today and it’s also been sent to the LA but I’m not sure how long it will be before they make a decision. I’m pretty much prepared to have to appeal as that’s how it seems to work in our area.

The EP has sent me a list of schools which may be suitable for her, and advised me to start researching asap. He said the list is just based on his knowledge of which schools have provision for autistic students but he doesn’t know much more than that, so I have no idea where would truly be suitable and where wouldn’t. She’s highly academic but with SEMH needs and probably needs a unicorn school which doesn’t really exist. I’ve asked on a local SEND parenting group for help but getting very mixed views on all the schools… I couldn’t imagine her being able to cope in a mainstream school at all but in my area it just seems to be massive comps 😕

Hey @ISaySteadyOn sorry to read that you're feeling a bit duff with everything. Don't blame yourself you've only tried to do your best. And what you thought would work at the time.
My eldest DD used to be so compliant. Worked so hard I always thought back then her burn outs were because she was the youngest in her year and there was SATS pressure blah blah. I never once had to ask her if she had done her homework DS total opposite. But DD didn't get any credit at school for her endeavours because when she did get burnout and was off school was quite nasty towards her. It's very hard even now she's an AUDHD workaholic and there's the constant worry that it could all just go. She lost all MH support in the pandemic because they just could not pigeon hole her and had no solutions so they discharged her with her self harming as an acceptable coping mechanism.
I think one thing is school is not forever but a diagnosis is and learning to live with that and live a life with it is the most important thing.
Stop being hard on yourselves ladies.

@Leafywool I'm glad you got your new job started at least and things sound better overall for you but you've just got through one obstacle and they're putting a new one out for you. Poor DD just trying to get settled they really should give her more time. But good luck with your search.
I bribe GS with his CPG books. He's just so PDA and left handed so really hates writing but I do 20p a page!😂 Don't know how long it will be before he thinks he deserves more. And we go to Smyth's at the end of the year for doing a good job.
It's really hard with these nervous systems getting the balance without inflicting damage.
I know home educators who are just so laid back and I've read all the reasoning but I like to have structure. But many would say it's not right for him.
But hey we do what we can he slogged through 1.5 hours of English and maths this morning and then he's shattered. He's happy reading on a Kindle but if I force him he doesn't engage and then it doesn't go in does it so sometimes we have to not push it. I think that's one of the problems with these huge schools one size does not fit all and I don't think it particularly fits many.

@Luddite26 honestly I think we would need structure if we were home educating too. But I’m also autistic so between us we would lose all sense of reality if there were no routines 🤣

Well I am shocked today as I’ve just had an email to say the SEN Panel have agreed to issue DD’s EHCP!! Considering something like 87% get rejected first time around in my area, this was totally unexpected.

I am going to email to clarify, but they have said ‘Part of the process when we issue a Draft EHCP is to consult with the current school, and any parental preferences. May I please just confirm that it’s your preference for DD to remain at [current school] while accessing MNHES.’

I would like her to continue at MNHES for as long as possible as it will be good for her, but i know her current school cannot meet her needs longer term. Do I need to be telling them about my longer term preferences at this point or do they mean what my preference is right now? I may be better off posting on the EHCP support thread.

I have no idea about that but I wanted to say that that is great news that they will issue her an EHCP! I am happy for you! 😄

Thank you!! I actually can’t believe it. Even the educational psychologist told me I should expect for it to be rejected and to have to appeal, so I am pretty gobsmacked.

ach I just lost a long reply.

@Leafywool congratulations! The bit where you name your preferences normally comes quite late in the process so I am not sure what they are on about. With my cynical hat on beware of them attempting to offroll her, because she would have fewer rights if off roll, but equally you don't want it in writing that you are naming current school as a preference. It may depends on the terms and limits round her current setting - could it be named as her school long term?

Don't be scared of looking at special schools. It can be very hard to tell from their websites what academic level they cover. DS's unit covered everything from top grades in 12 GCSEs to no GCSE passes. They all counted as broadly in line with age related expectations. But how academic or otherwise they were was not the most interesting thing about the child there IYKWIM.

Thank you @Piony - I am reading it as they consult with her current school to write the draft, so am I happy with the current set up for now (which I am as I would like her to stay at MNHES for now since she’s had so much upheaval). But I am very conscious of misinterpreting it and potentially causing an issue further down the line. The HoY at her current school has said previously that the resourced provision there wouldn’t be suitable for her as it caters to children who have a learning disability so they are working at a level much lower than dd is, so I can’t imagine her going back into mainstream there.

There’s a special school locally which a few people have had good experiences at so I’ll look into that further. Like you said, it’s so hard to know what they offer. I’ve also heard really mixed reviews about other schools, some saying it’s been fantastic for them and others saying it’s been awful so it’s such a minefield. I’m not entirely sure what the best way to approach it is. Maybe make a shortlist and do some visits (no idea how when I’m working full time 🥴).

I think I will email the case worker back to clarify what she means.

Round here they vary in whether they accept visits at this stage. We found some would talk to us once we had the EHCNA in progress, but others wouldn't until they had seen the consult (the bit where your caseworker sends them the draft EHCP so they can assess whether they can meet need, which is 16ish weeks away for you.) Multiple times I have come across really good settings blanking my first email and responding to my second. I have no evidence for this but it's happened so often I wonder if they use this to filter enquiries, as there are so many children looking for specialist placements and they get so many consults. One SENCo told me she gets consults for girls across her desk every single week - at a boys' school.

But that doesn't mean it's hopeless, it just means you need tenacity and luck.

I would recommend requesting any other reports you feel would benefit DD, eg OT, speech therapy unless you already have good reports less than 2 years old. Quote chapter and verse on your right to do so - I can find it if you need it? Showing that you know the law on this can only help. Some LAs do these reports anyway (I imagine?), some will if you ask, mine completely stonewalled all our requests so it's something I bang on at people about.

But the wheels do turn fairly slowly. Our experience was nothing happened for weeks, then there would be a flurry of activity right before each deadline. Put the deadlines in your diary and keep an eye on them.

It sounds like she is doing well.

@PionyThank you! I have emailed 4 schools this evening. One of them we actually looked round when we were deciding on secondary, and they do have a good autism resourced provision, but obviously at that point we had no EHCP and (naively) didn’t think we had need for one. It’s also one of our closest schools, just a train stop away, and some of DD’s friends go there too. So I am hopeful that might be a good option for her. I’ll give it a few days and chase up if I’ve not heard back.

I emailed the EHCP case worker with a couple of questions and got a reply that she’s out of office until 5th June which is incredibly unhelpful!! So I’ve forwarded on to the general email. Hopefully it doesn’t get lost in there.

We have only had the EP report done. I don’t think speech therapy would be relevant to dd but not sure about OT? To be fair, the EP was fantastic and totally understood DD’s needs and I can see that reflected in his report.

She is doing really well actually, I am so pleased. I feel like we have genuinely turned a corner with her being more settled at MNHES. She said she’s been talking to a girl in her group and they went on a walk together at lunchtime and had a chat, and they partnered up on a task in class. She said ‘I don’t know if that means we are friends now but it feels like it’ 😭 I had a review meeting with her tutor this morning and she said she’s had glowing feedback from her teachers. She’s been really engaged in her work, putting her hand up to answer questions and getting involved in debates in English. I am really proud of her. She’s even said she might try the Horizons group tomorrow (the social thing they run on a Wednesday afternoon) which is massive for her!!

That sounds wonderful @Leafywool . Well done to you all. Fingers crossed for tomorrow.

@Leafywool did she make it into Horizons?
@ISaySteadyOn how are things, have either of yours been in this week and how have they found it?

DS is very busy with his hobby and we are seeing some signs of a bit more capacity like he's offering to help cook dinner. I'm not sure he is even looking forward to half term particularly, he's not as exhausted as usual. I will have to try to find something to tempt him out of the house with.

@Piony Yes she did! And she LOVED it. She text me saying it was so fun and she made a friend. She even said yesterday she was gutted it’s half term next week as she wants to go to school again. Which of course is amazing but I am suspicious of how enthusiastic she is haha.

Good to hear DS seems less exhausted. Not sure if the hot weather here next week will be a good or a bad thing for our kids!

@Leafywool Amazing, well done DD! Hopefully it'll help you with settling into your new job too, having that small release of some of the tension (though it doesn't stop being hard).

DS has gone almost every day this week. We had a meeting at DD's new school and she met her buddy who is going to show her how everything works. She seems pretty happy and the accommodations they are willing to make for her autism are everything I could have asked for. I feel really lucky to have found somewhere and that we have the wherewithal to send her.

DD1 is doing amazingly. She's growing into such a thoughtful person. It started to rain and without my asking, without my even knowing, she brought in the laundry that was hanging outside. She told me that she had done so in a just letting me know sort of way.

And when I think about it, overall, they're nice kids with just this one area.

@Leafywool so glad for your DD!

I missed your update @ISaySteadyOn. How lovely.

I've just clocked that college term is shorter than school terms so DS has just gained 2 more weeks of summer hols! He's happy, I am a bit worried about a 2 month break. It was so much easier when they were little.

Not good morning with DD so far. She is angry with us for deciding on a school to send her to and says she didn't want to go to an independent school anyway. I am trying not to panic. I picked that school because I thought it met as many of her rigid criteria as possible and parents have to make decisions.

Of course, she is also 13 so anything I do is wrong.

oh no @ISaySteadyOn is she meant to be starting today? Or is this for Sept?

It's so hard to have these conversations.

She's meant to start today. The school are lovely but I am already thinking this isn't going to work.

I hate it and I hate that I am cross with her and she keeps talking to me in this hard, brittle tone and I feel absolutely awful.

Doesn't help that DD1 kind of told me off last night for my own struggles with low self esteem and how that was unhelpful for her. I apologised of course but there's an irony there.

DS getting resentful because DD keeps rejecting his friendly overtures and he's even swallowed his own pride and apologised to her for something he didn't think he should apologise for.

It's pretty crap all round. At least my roses are blooming.

@ISaySteadyOn she's distressed, you're distressed. It sounds like you're all still in a bit of a crisis really, or not far off it. It won't always be like this. Sometimes all you can do it put one foot in front of the other.

On our autism course talking about how autistic people are said to lack social skills etc the leader said imagine there's a hungry lion in the corner of the room. If someone tries to engage me in school work or a conversation about my feelings I might come across like I am not listening, I might not be polite or considerate of the other person's perspective, I might answer sharply because mostly I'm in fight or flight from the lion. I come back to that image over and over. And I think so often, making things low demand for my child means making them higher demand on me, which is not always sustainable especially if you have 3 with high needs.

It's only day 1. Going back to school after hols is often awful so don't panic yet. I hope tomorrow is better and school can make some adjustments to help her in.

Thanks. You are right. Fingers crossed.

Sorry, that comes across as incredibly brusque. I really appreciate what you said and it does give me perspective, but I am also in the room with the lion, I guess.

There's a book called Elephants Cannot Dance and there's a phrase that seems appropriate here which is 'We will try again' or I can go full Scarlett O'Hara and say ''After all, tomorrow is another day '

I am so glad to have this thread and know I am not alone.

So sorry to read your post @ISaySteadyOn
How are things now towards the end of the day?
I'm sorry you have had a telling off from dd1 too. Sending you a hug. You must feel rotten today.