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.

Those are great ideas. Thank you!

I am ashamed to say I had to take a sudden leave of absence from Mumsnet when I found myself banned.
I was a bit fuming so have only just been allowed back on! It was all a bit of a bun fight on a crazy thread I think I was banned for saying the thread was fake. I've no idea really you just get unceremoniously blocked.

Anyway I'm sorry to see that people are returning or looking for a sympathetic ear on here.

@DrCoconut
How are you and your son doing? Is he in year 6? Do you have any family support ? A lot of people just say make them go and that is easier said than done.
Are school being supportive?
What has your DS said he wants to do?

@CosyPinkBeaker I'm sorry to read your post. It is very sad to see children seemingly lose their full potential and to feel societies expectations.
Only yesterday a lady I work with who had only just said hello to my 7 year old grandson then barked at him No school?
And the pressure mounts.
Try not to worry too much about the future right now is what is important
Helping them feel safe.
FWIW my youngest DD is a nurse after a full school life of EBSA . Looking back things would be different. She still has bouts of crippling anxiety but lives independently about an hour and a half away. It's been a long winding round and far from great. This year hasn't been the best but she keeps going.

@LittlePickleHead I'm really sorry to read your post. It is unbelievably stressful and sad.
Has your DS been labelled PDA at all or have you looked into it?
GS 7 is quite emotional ATM and feeling it or as he says not really feeling it whenever he is offered to do anything. And it it an emotional rollercoaster cos you can't seem to help.

At least we are all on similar paths and don't sit in judgement like so many others.

@Luddite26he has been diagnosed as ASD with a demand avoidant profile, so I’ve definitely been reading as much as I can about how to approach this - as you say, it’s so so difficult

@LittlePickleHead thankyou. I wasn't sure how it is worded. There is a platform called Substack which seems to have a lot of writers on it! I have read a lot by a lady called SENDinmama. I don't know whether you have come across her.
Also a book called Unschooled has been an interesting read. I'm also realising a lot about my self while looking at all the PDA stuff. I seem to have tunnelled through my life on the edge never being able to turn up to arrangements I gave agreed to like weddings and getting in a total state up to the last minute then when it has passed feeling the relief but not caring that I have annoyed people just because I can't do it.
I've formed an insular life. I've joined in with things like PTAs but undercover.
The demand is like a stranglehold and the relief when ithe time has come and gone. Tax return is one example for me I will sit thinking about it for months every day I could do it and probably 3 tmes in 25 years I have done it before the deadline . It's always the 31st or later and I pay the fine. And I could do it it is simple and takes little time. I just can't. Every day I think I should do that today and instead I will stare into space day dreaming. That is my life story.
It is such a shame academically that your DS couldn't have continued on the online. But that is it he couldn't. And that is that.
X

Was just searching to see if there was a running EBSA support thread so glad to have found this!

My dd is 12 and Y7 at mainstream secondary. She was diagnosed with autism in 2024. We ended up going private in the end as CAMHS refused to assess due to ‘insufficient evidence’ 🙄 Dd is classic highly academic high masking girl and very much flew under the radar for years. She got on ok at primary and had a couple of wobbles, but thrived in Y6 thanks to a fantastic teacher who really understood her. She took part in the residential and pushed herself to try things she was scared of, stood up in front of the whole school to make a speech and was elected the school prime minister, smashed her SATS and got the lead in the school play. She did incredibly well, and it’s really sad to see the difference in her in just a short amount of time.

She started Y7 in September and threw herself into it. It was going suspiciously well but we went with it, and the wheels fell off after a few weeks. It started with ‘illness’ which turned out to be crippling anxiety and it’s gotten worse and worse over the past few months.

She’s had adjustments in place from the start - loop ear plugs, pass to leave class early and avoid busy corridors in between lessons, a 5 minute pass to leave class if she needs a break, toilet pass. She struggled to use these as she hates to be singled out and seen as different so they didnt help her much. She ended up on a reduced timetable, missing form and going through the main reception, doing one lesson a day in the Learning Support Hub then coming home before lunch. We managed one day of this, then a couple of days where I got her in extremely late and then she couldn’t go in at all.

Her anxiety has gotten very severe and she’s been suffering with very low mood over the Christmas break and beyond. Her cognitive functioning has gone right down and I can barely get her to leave the house. Managed to convince her to have a bath for the first time in 2 weeks yesterday. And im having to sit with her until 2am most nights to get her to sleep. She’s on edge all the time and having constant meltdowns.

She’s not been back to school this year apart from a quick meeting with me, and one hour last Tuesday where school wanted her to meet with a neurodiversity specialist who works with them (who was great to be fair). I’ve been dealing with the Y7 transition coordinator and Y7 head of year and they have been lovely and supportive, but we’ve had absolutely no input from the SEND team, despite me specifically emailing them. I understand they are busy but I think it’s very poor considering how unwell she is and how she cannot access school at all.

I submitted an EHCNA form last weekend, and spoke with SENDIASS for some advice. They told me that our LA refers to the MNHES (Medical Needs & Hospital Education Service) for S19 provision in a lot of cases. It is seen as a temporary measure to then build up to going back to part or full time education, but temporary could mean anything from 6 months to a few years. Dd is part of a group for autistic girls and there’s a couple of girls from the group who go there. I think it could be a good option for her so it’s my next thing to push for, but we need a referral from school and the GP to note her anxiety and refer us to CAMHS. We had a GP appointment last Monday and they agreed to make a referral but did warn us not to expect much from it.

Sorry this has ended up quite long but I feel like we are in limbo at the moment. My poor dd is so sad and keeps asking what will happen in the future. She is so bright and wants to be in school and loves learning so im just so gutted for her. I think she would thrive being home educated but I need to exhaust all of our options first, as it would be a very big decision/change for us due to work etc.

School have asked her to go in again for an hour on Monday and she’s so stressed about it. I’ve told her there is no expectation from us, and if she can’t go then she can’t go. My next step on Monday is to chase up the SENDCO again for some more specialist advice about the MNHES referral, and I am tempted to just send off the S19 letter to the LA and hope that will trigger something at their end.

I’m going to have a quick scan through the thread, but hopefully people are still around/lurking here. I’ve joined a FB group for EBSA and it’s been so helpful to read other people’s stories and know we are not alone, as often it feels like we are.

Hi @Leafywool, welcome and thanks for rebooting the thread. I can relate to so much of your story. We too chased down whatever bits of attendance we could and in hindsight that probably made things worse but it's what you do, isn't it? And it doesn't make it our fault.

It sounds like EOTAS / EOTIS with an EHCP might be your most realistic alternative to home ed. There may be some special schools that can offer a more manageable environment. I would only counsel to go and look if so, and don't assume they are not suitable just because she is bright. They might not talk to you until you have the EHCNA decision to assess in place and/or until they have received the consult from the La which is later still in the process. They get a LOT of applicants and they have to manage it somehow.

A small silver lining is that she is still young and has plenty of time to recover and find her way back to some sort of learning before GCSE years. But you have expressed so well what a huge impact this is having on you all.

@Luddite26 hello again lovely lady. Really interesting to hear your perspective on your own feelings on being given demands. I do worry about how DS will manage as an adult, especially work, but at the same time I know YP who couldn't stay in school and are now working FT, albeit not finding it easy, and I know there is more to life than work. I hope your boys are getting on OK.

News is still pretty good from us. Thinking about driving lessons, which seems like a huge demand but DS is keen to try. Things are still delicate but when I look back to Y10, when no one expected him to be accessing school at all by the time GCSEs came round, he's come so so far.

Hi @Leafywool sorry you have had to come looking but you are very welcome here. And there is an earlier forerunner thread to this one which has a lot of stories which you may feel you are living through.

I thought I was getting deja vous but then realised I have read your posts on the EHCP support thread. I know the ladies on their are a fantastic support, so knowledgeable and helpful.
I am sorry for what you and your daughter are going through. You are doing the right thing by supporting her and not pressuring. As @Piony said you are better off trying to get help through the system rather than withdrawing her to home ed because then you are left without any help. A lot of families have been forced (offloaded) to home ed rather than doing it through choice.
There is a book called Unschooled by Caro Giles about a lady with four daughters who has been through the mill with the education system. I have a copy if you want it pm me where to send it or it should be in the library. The lady also writes on Substack with a link on where to buy her book. As does another lady called Steph Curtis - and she has written blogs and a book worth looking at very informative.

Unfortunately you are not alone. If you read any of the posts on here you will find people at different stages. The beginning of the despair - where you are now, the absolute feeling of utter despair where it's been going on a while and you see no hope, then the time where time has passed and there are glimmers of hope and kids are putting one foot in front of the other.
At least it is year 7 so you have time to breathe.
I would try everything you possibly can to make the system support your DD. I am a home ed advocate and I know it works for some kids but as so many say it's not always possible. But I also know anxiety doesn't go away. My DD who is 28 now has had an awful year with her anxiety and is really struggling with work in a similar way to EBSA all over again. So quick fixes aren't a solution.
I've also been listening to a podcast called ADHD chatter and there was one episode particularly about the effects ASD/ADHD can have on a female like crippling anxiety. It's worth a listen as the experts on there know far more than most GPs.
And don't listen to well meaning friends or family members who may say just make her go to school. It is of no use whatsoever.

PS @Leafywool the hospital school option does sound like your best bet right now. I hope you can get somewhere with it.
I would just make sure DD knows that she is under no pressure to go to school at all till she gets a place there maybe like when you get a sick note from work and know you aren't going back for that length of time. Her anxiety is far too much right now (as you say with her refusing to go in the bath). You can't let it get any worse really take the pressure off.

Thankyou @Piony the boys are all doing ok and trundling along as good as can be hoped for ATM thankyou.
It's really lovely to read your update. Driving lessons sound very promising I hope your DS can access them and not get put off with early days nerves. It's such an achievement for young people to help with their day to day living.
And yes work isn't everything but it's a big key to life and EBSA doesn't always mean work will be a problem it's just about getting it right isn't it. And understanding your self.

Thank you for the warm welcome and kind words.

@Piony I am finding it difficult as all the information I can find online for local provision is very much geared towards children who also have learning difficulties (sorry if that is the wrong term, but hopefully you understand what I mean - this is all new to me so still getting to grips with the language!!). I am unsure who to speak to, or how to find out where offers provision which would be suitable for her. There is a FB group for parents of SEN children in my area but again it looks to be mainly parents of children with much higher/different needs to dd, as I posted and didn’t get much of a response. I spoke to a lady at the local branch of SENDIASS a couple of weeks ago - I wonder if they would be able to advise or if their knowledge is a bit more generalised?

EOTAS is something I need to learn more about. I have seen it mentioned a lot and have seen comments that it’s pretty much impossible to get our LA to agree to. But I will of course exhaust every option we have.

I agree with you, I am glad this has all happened in Y7 and not further down the line as it would be even more of a nightmare. I really feel for those who are dealing with the startings of this in GCSE years. It must be so so stressful.

@Luddite26 Ha, yes I did think I probably should have just copy/pasted my post from the EHCP thread to save myself typing it all out again!! I will look for the earlier thread as I am sure it will be helpful to read through. I am reading as much of other peoples experiences as I can at the minute as I find it so useful.

I have just looked and I can get that book through the library (and also it might encourage dd to leave the house and come with me!), but thank you for the offer of sending me a copy - that is very kind of you.

I’m sorry your dd is struggling at the minute. I am autistic too alongside my dd and have had the exact same problems with anxiety throughout my life so I totally get it. It is really hard to see them struggle, and I can imagine it’s still just as hard when they are adults too.

School wanted her to go in for an hour again today and Wednesday, and she’s been crippled by the thought of it all weekend. She said to me last night that despite me saying there is no expectation from me and DH for her to go, she still feels like school are expecting her to be able to do it. I told her it’s tough shit for them and they can expect all they want.

I emailed to chase up this morning as no one had replied to my email from last week. I got a response from SENDCO saying dd was discussed in their meeting last week re MNHES referrals and her colleague would be in touch with me at some point this week. They did warn me that MNHES need evidence of a medical need preventing her from accessing school to accept a referral and asked if I had any reports from any medical professionals involved (GP, MH specialist, CAMHS). SENDIASS told me that anxiety being recorded by the GP and a referral to CAMHS will be sufficient, so I am going to pop into the GP surgery today and ask for a printed summary from our appointment last Monday. SENDIASS said this would be enough but now I am doubting myself and worried that I’m going to be told I don’t really have any substantial evidence for a referral. I’m not sure what else I can do at this point though? We have only had this issue since September so no need for any medical professionals to be involved until this point, and even then I know it can take months (if not years) to get anywhere - so will we be stuck in this same limbo for all that time?

In my experience with DD in 2011 so probably not relevant her school refusal only lasted a few weeks before she got transferred to the hospital school. I would think it would be quite possible now and I think there's more chance if you are insistent. Definitely go into the doctor's or have a phone appointment with the doctor. That expectation from school has to be removed.
There's every chance she would settle into the hospital school. My DD was pushed back to school too soon but I have heard mostly on here that they don't push kids back now and I would definitely refuse to go back if DD didn't want to.
I hope you can get that sorted. Hopefully school will push for it too.
I hope DD goes to the library with you and maybe finds something she enjoys reading.

Is she interested in doing any work at home? You could have a free 30 says with Twinkl and see if she feels like learning at home or something else. I found reading and crafting were some of the best things for DD while she wasn't going to school. Like try to get her to see that you don't have to go to school to learn as she is a very motivated child she will see that she can still learn. Obviously without stressing her. But reading etc can take her mind off it.

At least you know how she is feeling. It's very sad. I hope you get some news soon.

@Luddite26 Thank you, much appreciated! I understand the hospital school is only a temporary measure used as a stop-gap to get them back into full-time education, but I know of a few kids who have been there longer term. The lady I spoke to from SENDIASS said the placement is reviewed every 6 months but it's very normal to stay much longer. She said it could be that she stays there until she receives an EHCP with a more appropriate setting named, however long that may take. There's a few girls from the autism group she goes to who are at the MNHES and it works well for them, but I have heard of a couple of parents who said it didn't work out for them. I guess we can only try can't we.

She is very self motivated and interested in learning so I am definitely going to try and get her to do some home learning this week. Even if it's just a couple of small bits to keep things ticking over. She has just agreed to come out on a dog walk with me which is amazing as she's only left the house once in the past 7 days!

I think it sounds like it would be a really positive step for DD. My DD was happy enough going then they said she had to go back to school after only a matter of weeks and she lasted one day back and we were back at square one so we deregistered and she enjoyed being home ed.
But that was ages ago and things have really changed. And don't go down the home ed route as you get no help with anything. Keep battling.
I hope you both have a nice walk. And hope you can feel better about everything soon.

The hospital school sounds like it could be a good option. It is all about knowing what there is locally. Round here I know a couple of people whose children were given hospital school but they weren't very happy, because the provision was almost zero. If the child couldn't attend the setting for their half an hour of English that week then that was it, zero learning that week kind of thing. But there is no reason to assume that is a general problem, and in theory they should be well placed to help if given enough resources. I love the idea that your daughter can access alternative provision so soon - that could make an enormous difference and really limit the damage.

SENDIASS are hit and miss. Can be good, can be a bit less independent from the LA than ideal and inclined to repeat the LA line even when that is illegal. Like with schools, you get the best response by asking bounded, factual questions. And expect to do your own research. We started out on this journey thinking the LA caseworker would suggest suitable schools, the right experts to include etc but ours was more like a project manager - they manage and gatekeep the process, they are not advisors. In our LA anyway. Just try to make sure you are not being fobbed off with a great deal less than DD is entitled to. But this is difficult to judge and advocate for when they can't cope with very much. They may be entitled to a full time education but it's moot if that is too much for them.

I think reading up on home ed is useful just to give you a sense of options. We think 8-10 GCSEs then A levels is the norm but mostly students can get into sixth form with 5 passes, not necessarily taken in the same sitting. Even unis only need 5+ passes including maths and English. Lots of home ed students do manage higher & further education by concentrating mainly on their interests, and yours might be able to too via similar routes like hospital school, online school or special school.

I know exactly what you mean about special schools, but I mention it because that was my assumption too and actually we have met a huge range of academic abilities. I will be forever grateful that staff in DS's autism unit really saw the need, and how distressed he was, rather than just the academic ability and the fact he was doing his work.

Hello. Someone suggested I could possibly post here but I'm not sure if this is the place for me.

I have a Y7 DD11 who refused school today. I know it's early days but I'm not managing very well.

She not diagnosed with anything. She's in top set classes and whilst it was hard to get her to do her homework and she moaned a lot about school she seemed to be doing ok until Friday when she fell out with her friendship group. They've all ostracised her and she's spiralled all weekend and refused to go in this morning. She hasn't eaten much all weekend. Refused to come out of her room. Not showered. I emailed the school who have made plans for her to go in tomorrow but I'm not sure she will. It's all come on top.

I know I should be calmer. I myself haven't eaten since Saturday. I'm so scared for her. What doesn't help is my other DD9 is starting to play up as she sees that DD11 is getting all the attention. I'm not sure what I'm asking for posting here.

Hi @Fedupofthisgame , best of luck for tomorrow. Her HoY if not her tutor should be used to friendship issues in Y7 and will hopefully have some ideas that might help, if a lot of this is the friendship thing. Sometimes things that seem unfathomably impossible to her - a new tutor group, finding a new group to eat lunch with - are really very doable.

Please look after yourself. Eat. Sleep. If not for yourself, do it for her. Read up on co-regulation and try to deal with your own anxiety as best you can so that you have calmness that she can draw on. It's an overused cliche but put your own oxygen mask on first. She needs you functioning well so that you can help her.

Whether you feel it or not you can fake it til you make it. Talk slower than her, quieter than her, breathe slower than she does. But please eat and look after yourself. Best of luck for tomorrow.

I'm really sorry to read your post @Fedupofthisgame .
It's very easy for DD to fall into a pit of despair when this happens. It's quite a regular thing for girls to fall out and be pretty mean. School should have support in place in this day and age for DD to come back into school.
It could easily all blow over or it could become hell for her. Come back after you have spoken to school today. Fingers crossed for a magic wand.

@Fedupofthisgame I am also sorry to read your post. I agree with PP. Do your best to remain calm and don't force anything. It really backfires.

Be present and ime, they eventually come and talk to you.

Nice to see you @ISaySteadyOn . I hope things are ok for you and your daughter, and you are finding some sort of way forward.

@Leafywool section 19 provision isn’t only limited to hospital school. DC are entitled to a suitable, full-time education. The offer has to be suitable. There are lots of options.

Neither does s19 provision require a referral from the school. Don’t let the LA fob you off with that. Also, the LA should not be insisting on specific evidence.

For EOTAS/EOTIS via an EHCP, it doesn’t matter if your LA won’t agree. Most have to appeal for a proper package anyway; for that it isn’t the LA making the decisions. You would need to show it is inappropriate for provision to be made in a school.

Thanks for those have posted.

she went in on Tuesday with some plans in place by the school. She did make it through the day but said it was a waste of time. She was talkative about random stuff though which was nice to hear. She ate last night and we watched TV for an hour where she laughed and joked about stuff.

This morning. She refused to go in. I emailed the school they replied, I replied and overheard nothing since. I get that they have things to do.

I sat on a 2 hr school avoidance webinar this morning. Frightened the life out of me what some of these families are going through. It's made me realise there were signs I didn't pick up before hand. Not sure the whole friendship thing is going to be the end of it as there are clearly other issues going on.

I just don't know where to start. I'm juggling my DD, my other child, full time job. I just want someone to speak to I think to see where I start.

at the moment she is in her bed and won't speak to me. I've asked her to come down for a drink and something to eat and she grunted.

Oh no. My sympathies go out to you @Fedupofthisgame .
I would start with a GP appointment for DD if you have seen other signs and not just because of the friendship group on Friday.
Did she see any of them yesterday?
Can you speak to her head of year or tutor or whoever is in charge of school avoidance for DD and see what they are going to do.
What are you doing about work this week?

Yes a conversation with the right person at school might be more efficient than email. Follow up any phone calls with a summary by email. Keep a diary - yet another job on top of everything else but it'll be easier later if you can keep track as you go along.

It's a big paradigm shift isn't it? Very difficult with work especially if your job can't be done from home. I think we were lucky that our other child was older and quite motivated to just kept plugging away at school, but it's been really tough on her too.