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.

Another week...DS has gone in without too much bother, I think it's the transition from home, to my mum's and then to school that seems to be the problem if that makes sense?
I don't really know what to do about it though, he gets so upset and angry every night and then in the morning he's constantly complaining and saying he doesn't want to go...but then goes in ok.

He has his 11+ on Thursday...I really have no idea how it's going to go. He's got a separate room and support with timings, movement breaks etc. I am thinking more and more I need to apply for an EHCP but school keep saying he won't get it. I just don't want to be in the situation I've been in with DD.

She's still doing well, she's even started to work downstairs in the office, which means I get home to a million cups and plates sitting around in there, but I'm just glad she's out of her room. Bought her a new office chair today and she's been baking, so it's all really positive.

Just so worried for DS, I've just booked all the open mornings I can, I'll take him to my school too if he passes the test. He would get a guaranteed place there but I worry as he's so attached to me that if he did come to my school he'd just be running to find me all the time, and that would cause huge issues. Or if he stopped attending...I'd basically have to stop working! We do so much more at my school for the SEND students but it's still a big school, with crowded corridors, noisy bigger boys who are very boisterous and dome are very grown up for their age and streetwise...he's just not like that.

Even if I did apply I just think it's too late now anyway to get him in anywhere specialist and I don't think he would get something like that without a fight.

I just don't know what to do for the best. @Luddite26 yes I know what you mean, I think he has struggled a bit. He was 5 when we separated and of course loves his dad but I just don't see any connection between them. His dad just doesn't really get him, and even when we were together he was so clingy to me that he didn't get a look in. I'm so angry to or them that he's just dropped half his contact without even explaining it to them, but that's what he's like, there no emotion there.

Sounds terrible but I'd really hoped I wouldn't need to drop in on this thread at all soon enough! 😀 We shall see...DS might be my reason come September, I really hope not though!

I am so pleased to hear really positive news about DD @Icantpeopleanymore
You have really turned things around for her and she will have time to get what she needs. It isn't what you thought would be her path when they first walk through the school gates but one day she will want to hold her head up and be proud of her achievements and she will have done it just by a different route. Thanks to your tireless devotion.
I think with DS it's one step at a time. The EHCP thread is the best place for advice about that. I would have thought being armed and ready to roll out a safety net would be best.
I know I have mentioned it before and I don't mean to sound woo but Bach's flower remedy drops may help your DS. Itay be worth a try. I hope he can get through his exam on Thursday and that will be a weight off your shoulders.

I hope DS got through today ok @Icantpeopleanymore.

Hello all. I was on the last thread for a while and dropped off for a bit, but back again needing support, handholding and advice.

DS12 struggled with school for years but had a lot of support at primary that enabled him to make it in majority of the time. The wheels fell off with a badly managed year 7 transition which led to complete inability to go in by last November and what I now realise was autistic burnout. He was in online school for the last two terms, during that time received his ASD diagnosis, had multiple interventions with psychiatrists, psychologists, EPs to understand where to go from here, and we started the ECH process (he's currently mid needs assessment, we're waiting for the EP to contact us ahead of going to panel in the next few weeks).

At first online school seemed like a godsend, we were managing to keep him in contact with friends and he was still learning. But despite his difficulties he is sociable and started to find it very isolating. He wanted to be 'normal' although he struggles with so many aspects of the school day.

In addition to starting the EHCP we registered him back at a different mainstream school with a much better SEN provision, he got a place last day of term and so we've started a phased return for him last week. We had a letter from his psychologist of adjustments needed, and I have to say the school have been fantastic at trying to facilitate this, there is an ASD advocate who is his named point person, they are totally flexible as to which lessons he starts doing.

He made it in last week, just for tutor time and then on thursday the first lesson. On Friday he said he had tummy ache so just stayed for tutor time. He was distressed and anxious all weekend over school, and then today not surprisingly he hasn't made it in. I think this is just validating that he needs support over and above what a mainstream can offer. He's currently hating himself and saying he wants to die because he wants to do it and can't.

But I don't know where to go from here - he is depressed with online and not seeing people, we've been to visit smaller more specialist units but he didn't like them (he doesn't really present as autistic and there were quite significant needs with some of the children there which he found overwhelming). He can't cope with mainstream, we can't afford a smaller private provision.

This is having significant impact on us financially as DH hasn't been able to work full time for a year now to ensure someone is with him. Given we are about to hopefully get the EHCP, what should we be pushing for in terms of provision?

I feel pretty hopeless right now to be honest

It must be even harder @LittlePickleHead having the place waiting all the summer holidays and then seemingly back to square one.

Is your DS PDA? I can only say to keep as low demand as possible.
I'm not clued up at all on the EHCP process but there is a long running thread on Mumsnet for EHCP advice and the ladies are amazing on how much stuff they know.
I'm sure if you put in the search -
EHCP support thread no. 5
You will receive excellent advice.
I find Naomi Fisher very insightful and your poor DS probably wouldn't want to read it but she has written a book for young people who are experiencing EBSA. It may be worth reading as a parent anyway if you had chance.
Also a lady called Caro Giles has written an excellent book called Unschooled which is pretty raw for many of us on here but a story of the times for many of us.
I'm sorry to be not much help but we are always here to sound off and you know you are not alone. I truly recommend the EHCP thread I read it regularly and it blows my mind how helpful it is to do many.x

@LittlePickleHead I feel for you, it's so hard when your child is in that place mentally.

I think I was lucky in a way that my DD was older so I could still work, I spent many days at school teaching and keeping half an eye on my phone to make sure she'd read my messages, days when she didn't I would get cover and leave to get home, panicking that she'd done something (history of self harm etc..) to find she just hadn't got out of bed and was totally fine.

She very early on just stopped going so in a way it was better as I knew that was it for her.

I got her EOTIS in the end, it took a year out of school but a fresh start with a very low demand approach to online school is working, a year later. We are coming up to the anniversary of her sitting on the bedroom floor, in her uniform, crying and texting me on my journey to work (don't hate me for checking my phone at traffic lights to see if she had got in the taxi for school) rushing home to her saying she just couldn't do it. It still took me another month or so to tell her, fuck school, sod doing the work they've set, you're not going back...and another few months to find something better, but we have it now, it's not perfect, it's not what I thought she'd be doing in year 11, but it's working.

She gets 3 subjects at GCSE, started year 10 again, and a mentor, but that's not working. Also an art course totally self led, we haven't started that yet.

I really need a mentor to take her out during the week, therapy and exercise/work on building up social interactions, but I'll have to appeal for that.

The EHCP process nearly broke me, but I'm still working, she's come on so much and the thread @Luddite26 mentioned was brilliant support.

He'll get there, but it just takes forever....but I did realise early on that it needed more time than I thought it would. No demands, no pressure, realising that some days she wouldn't shower or talk or do anything....but it's what she needed. 2 years ago I was dealing with violent meltdowns where she would attack me and seriously hurt me because she was holding it all in at school all day, she had an eating disorder, wasn't talking, stinking like mad as soon as she got home and was barely able to walk or even stand...but I'm so proud of her for saying (not in actual words, but with her actions) that enough was enough.

Have you applied for DLA? I got universal credit which I assumed I wouldn't, it helped me to go to 4 days a week, it covered most of the shortfall. With the DLA, we are ok... however DD is 16 in April so we have to apply for PIP which is mental to me, she's still a child...if she gets it I'll be ok, as universal credit will continue. If not, then I'll have to leave her alone at home 5 days a week, which would not be great, but again, we would manage.

DS was unphased by the 11+ tests, said they were easier than the practice...I've no idea where is going to work for him, but all I can do is make the best choices with the information I have...I know that if he stopped going then I'd basically have to give up work, but we would get through it.

I've got the option of him going to my school, he moans about going to school now but I think him knowing I'm there in the building might help, plus although it's a grammar we do lots for the SEN kids and they find their tribe...I've worked there 17 years and they know him, the other staff would look after him, regardless that he's my child, but maybe a little bit more. I just don't know though, I worry that if he struggles it could be bad for me, but then if he did I wouldn't be able to work anyway.

It's all bad timing as his dad has just moved away so I only get two weekends a month as a break now, plus he is pressuring me to sell the house by the time DS would be finishing year 7...if I couldn't work then if I sold I'd have equity which would mean no universal credit, no mortgage for something new, would be a disaster. I'd have to use all the equity to live off and that wouldn't last long.

Of course he cares not, he doesn't deal with anything for the kids day to day. He's not even bothered to ask about schools or the test, is clueless.

Oh well, waiting until the 16th October to find out how he did, looking at schools and talking to Sencos to get some kind of an idea where might be best..but even with the best will in the world, if they can't cope, you have to just adjust expectations!

@LittlePickleHead how is your DS doing? How are you?

Thanks for checking in.

We had an EP assessment today as part of the needs assessment, she's the one writing the report. She was absolutely lovely and it was helpful. Essentially her take was that we need to give DS space to recover from trauma, his diagnosis, and for him to understand himself and what he needs more before trying to understand what setting is right for him and trying to push him to attend. It very much sounded like the recommendation would be for an AP and a supported, phased transition into that.

His current school are being great but don't have the resource to continue the flexible approach indefinitely, he can't make it into classes and is in the quiet room for only 1 or 2 hours on the days he does make it in.

Next step the school ASD lead is going to arrange a TAC meeting for him and recommend referral to a hospital outreach programme who can work with DS to understand what settings are right for him without pressure.

It's clear this is going to be a long journey that we need to get right for him, and I still don't know whether the EHCP will be sufficient to get him what he needs, but at the moment at least I do feel we are being listened to. It's just the ongoing impact on our work that's hard to manage.

After the poor transition last year your poor son must have been yearning for that normal sense of belonging he could feel at primary school.
I hope you can all find a way to heal the trauma. My GS7 had trauma after just one term I feel we are probably through that after 21 months of being at home but nowhere near thinking of trying S again. He has been fed up since coming back from his holiday and his eating is not brilliant - gone off the things he did like.b he just says you'd feel like this if you had had to come back from paradise!
I think it's the demand avoidance coming out.
It is a long road . I hope that you can find a way that suits without further damage.
At least he is year 8 so time to be settled before year10. But obviously the impact on you all is ongoing. My youngest DD went into a hospital school for a while but they didn't give her enough time before returning her back to mainstream where she lasted a day. She's 28 now and still has periods of burnout - she's had one this summer and it's still a massive worry. Keep buggering on is all you can do.x

the ASD lead at the school said hospital outreach has improved in our LA now and there is less of a push to get them back in at all costs and much more about working with the young person to find the right setting, whatever they may be. The EP was quite open about thinking an AP is the right approach as mainstream is never going to be able to adapt to his needs. We need to work with DS for him to understand himself and what he needs as at the moment he is desperate to be ‘normal’ but he just can’t do it

I think that absolutely hits the nail on the head - working with him to understand himself and what he needs.
And that is really good to hear about the hospital setting I remember DD feeling happy about going to hers as it built her up again.
I hope you get a place sorted out soon.

New to the thread. DS is 10 and likely autistic (awaiting assessment). He suddenly started becoming distressed about school about two weeks into the current year. He has had situational mutism for a few years now and struggles to verbalise what is upsetting him, especially at the time. No one can pinpoint a specific incident or cause for the current situation. It's so hard to deal with, especially as I have to work as a lone parent so don't have ages in the morning to deal with problems. So, just here to meet others dealing with this really and get some ideas or just people that get it.

I have just been reading some of this thread, I'm not too familiar with the abbreviations so bear with me!

My step son (14) has been diagnosed with autism in Yr 9 but wasn't able to complete the ADHD assessment ironically because he missed some CAMHS sessions. Finally got EHCP in YR 10. He is highly functioning, incredibly bright and creative. He has lots of friends and is outgoing with them.

School attendance has deteriorated since Yr 7. School support initially quite rocky but he now has a key worker and a few trusted members of staff. The school have been brilliant lately and they go above and beyond. There is so much support at school.

BUT... Its horrible in the morning. The anxiety I feel in my stomach before I go to wake him is getting too much. If its a bad day, the tears and meltdowns and all the reasons why he can't go in come out. Its groundhog day again. He is that desperate not to go into school he brings up reasons from primary school, such as a teacher didn't believe him when he had tummy ache or a kid bullied him. I try to calm him down but nothing works, at this point I'm exhausted and so is he...I have no chance of getting him in as he is too upset and he won't learn anything and it will just create more stress for him. He won't access the support at school or lean on any support networks at school either.

I wish I knew what to do. Im sad because the potential he has is off the scales. Im worried that he will never be able to hold down a job and will constantly be let go. We don't sugar coat a lot with him but he is now coming to an age where he needs to build his resilience. Whenever we try to talk about it he dismisses it and says it will be different because it isnt school (I find this hard to beleive) What's his future going to be like?.

Has anyone got a child that has finished school, what does the next chapter look like?

Im glad I found this thread and that we are not alone.

Ach, I lost the thread again.

Welcome to new joiners and commiserations that you find yourselves and your young people in this position.

Small update from us. Sixth form college still going broadly well. Sticking with 2 A levels, no homework, but nearly full time in both his subjects.

He wouldn't be managing this at just any sixth form. We found a tiny sixth form whose USP is connecting with each student as an individual. It's not easy. He's knackered, he's still autistic, still struggles to get through the social demands of the day. But it is better.

One thing we've found is that moving to being in own clothes has helped more than he expected. There are no easy answers to uniform stress, especially in secondary, as often DC don't want to look different. Part of being autistic can be not being very aware of your internal feelings, and for him this meant not necessarily identifying uniform as part of the problem. But with hindsight it added more to his load than any of us realised.

@CosyPinkBeaker I think DS's future looks more like work than further study, because any tertiary education requires a lot of self study which he is quite far from feeling able to do. But just for now attending college is enough, and a huge step forward.

@DrCoconut is your son Y6 in England? That can be a gruelling year at some primarily schools.

How’s everyone doing?

we have gone backwards unfortunately, apparently when we aren’t able to get DD in for the reduced timetable it is now being labelled unauthorised leaving us open to fixed penalties. Our SEN Keyworker from LA told school they are still responsible for her education and to look at using the ehcp funding for a tutor for her.

older DD review been rearranged. Had to pay out for two tutors and a psych assessment as CAMHS has been pushed back due to therapist breaking their leg. Can’t wait any longer.

How’s everyone doing?

we have gone backwards unfortunately, apparently when we aren’t able to get DD in for the reduced timetable it is now being labelled unauthorised leaving us open to fixed penalties. Our SEN Keyworker from LA told school they are still responsible for her education and to look at using the ehcp funding for a tutor for her.

older DD review been rearranged. Had to pay out for two tutors and a psych assessment as CAMHS has been pushed back due to therapist breaking their leg. Can’t wait any longer.

Hi everyone, joined a while ago but feeling very low so back again. we are in limbo with DS12, ASD and suffering EBSA.

after two terms online he was desperate to try school again. We were in EHCP process and managed to find a school with much better SEN provision which has been so helpful getting through the process and so supportive, but he just couldn’t cope. Was managing 1 hour a day a couple of times a week in the LS room but even with that exhausted and withdrawing socially.

he hasn’t been in since mid Oct, half term was ok as he felt the same as his friends (he’s maintained friendships, mostly online, with his core group from primary) but since schools have gone back he’s struggling with being different again.

School have a referral in process to hospital outreach but still not heard back. We know we’re about to get the draft EHCP back so need to work out what provision we want to put down, but I’m at a loss. He needs therapeutic support to come to terms with his ASD and realise he needs an AP as at the moment he completely refuses to consider a ‘special’ school and just wants to go back to his school (but will admit that he ‘can’t’). We were paying for a private therapist specialising in EBSA but he wouldn’t engage and it was a struggle to get him there as he didn’t want to do any of the therapeutic work (just play games).

his mental health is plummeting and this week he’s been very disregilated and saying he wants to die. He’s been accepted by camhs and had an assessment but still waiting for the support to kick in.

im just really struggling knowing what to do, I don’t want to get the EHCP wrong so we’re seeing a couple of hybrid options next week. But without the therapeutic support (if someone he would accept working with) I just can’t see how it will work

May I join you all? I am feeling very lonely with this. DD1 has really struggled and even now she is in a program where she only goes three days a week, she still can't manage to go in every day. And it makes me feel like such a crap mother that my children can't do this basic thing. My other two have struggled too but DS is in a secondary school that he is happy at (says it's the first school he has been happy at) and DD2 has very strong friendships.

I am worried about qualifications and socialisation and I don't know the best way to help her.

Also, how does online schooling work exactly? Because maybe that would suit her better.

@ISaySteadyOn sorry I've just seen your message. DS went to Minerva for two terms and there were a lot of positives. There is a timetable of live lessons, and then around then work that needs to be done in a two week rota (you decide when to do the work yourself around your schedule). There was usually one day a week clear for just catching up on work. Each pupil had a weekly mentor call as well.

The positives: DS engaged with the learning, he had structure to his day. He got on well with his mentor. The lessons were engaging. He was self motivated to get the work done because it would mean he had the rest of the day free.

Negatives (for DS): We struggled to get him to put camera on or talk on Mic - he would sometimes write comments in the chat. He struggled with the lack of social interaction. There were frequent trips which were well organised, but not much in the way of adjustments for ASD kids so DS couldn't really access them due to anxiety. If they had even worked in a quite meet up first so he could have spoken to some other pupils and got to know them that would have helped, but it was usually a case of drop them off with a bunch of relative strangers, so it meant he couldn't access it. He found being online isolating even though we facilitated friendship meetups outside of this.

We've realised DS actually needs a hybrid mix of online and in person, but apart from an EOTAS package through and EHCP, we've only found one school that offers this (private).

However, loads of Minerva kids clearly loved it, thrived, made friends through the various online social groups etc, so it really does depend on the individual

@fedup1212 I'm sorry. The unauthorised absence is a huge extra stress that does no one any good, especially your daughter.

@LittlePickleHead that sounds so difficult. Would it be worth keeping up with the therapist and just accepting the games for a while, or have you run out of patience/funds for that? We were very lucky with a therapist who basically threw the notes and systems out and played card games probably for months before DS recovered enough to engage on anything more. I think she really had to hold her nerve. I was always confident he liked her though, just was not ready to do the hard stuff - which all therapy of any type, mental or physical, is.

Mindjam gets recommended a lot as an AP, I don't know much about it.

@ISaySteadyOn I don't know much about online schooling. From the small amount of research I did, there seemed to be a big variety in the amount of direct teaching Vs videos they can do in their own time. I remember picking one out from the promotional stuff that looked like a better fit for DS than either Minerva or Kings Interhigh but I never really got into the guts of it. I also researched places locally where you can rent out a small room by the hour and there was a surprisingly large amount of choice. Had he not been able to go back into school, I think we might have gone with hiring a room and a tutor to maintain that separation between home and school. I also found a tutoring centre locally which couldn't accommodate his needs, but they did have daytime group classes IRL for core subjects which were teaching rather than "top up" tutoring.

Information on alternative provision seems so hard to find. Maybe it's just my local council not maintaining their local offer but I feel like parents are having to re-invent the wheel just to find out what is already happening in their own town.

Thank you! It's just nice not to feel alone. It is hard to find things. DD is amazingly good at crafts, designing clothes, crochet, making plushies, earrings, etc but I can't really teach her those things being dyspraxic myself. I can't seem to find her any classes that would suit her. I wish there were a way she could have done a textiles GCSE but you really have to be in school for that.

In an ideal world, I would just apprentice her to a dressmaker 🙂

Hi everyone. My son has been struggling with EBSA since June last year. Plan with school to attend 2 hours per day but hardly does that at the moment. He’s in on the pathway for neurodiversity assessment. My question is how do you all manage with work. I work for the NHS at home but client facing. I’m struggling with the job and the emotional toil of the situation with my son. How have others managed this. Thank you

I wish I knew. I am a SAHM in part due to this. Trying to help them all is full time.

Me neither - SAHM too due mainly to this. I did manage to work when he was little, and every year I clung on helped a lot in the long run.

@ISaySteadyOn I don't know if this sounds crazy but could you help her set up a little Etsy business or something? Even the odd occasional sale would be a boost. If she could sell patterns even better as it could be passive income. I don't know how achievable this would be or if Etsy is even the right platform these days, but the amount of practical skills they learn in DT GCSE is limited so while it's a good idea, it is not going to make the difference in skilling her up for the industry.

Photography might be a good hook too - learning to take good photos of what she makes in case she wants to turn it into business one day, or just to build up a portfolio. I bet textiles is something you can do at A level without the GCSE. Photography is very popular at the handful of specialist SEN sixth forms that do A levels.

If you can find anyone who does prom dress alterations etc you could contact them and ask if they would do a few private lessons perhaps.