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EBSA support thread 2

891 replies

Luddite26 · 20/03/2025 06:28

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.

OP posts:
Jimmyneutronsforehead · 12/10/2026 13:04

waking up to a dark and very cold house.

I have also found autumn and winter to be extremely challenging with EBSA, because there are the increased interoceptive demands of stay warm, wake up and regulate the same as you would in spring or summer, get to the toilet whilst it's also chilly and uncomfortable, transition from warmer to colder and comfort to discomfort even if temporary while changing clothes.

It seems like small potatoes to the crowd that just don't get it, but it can be really hard.

We've started using a gro lamp type thing, the sunrise kind, and seen as I am up a bit earlier I put a fan heater on, but I'll be honest, I'm yet to see the improvements.

Piony · 12/10/2026 13:25

It's a very good point. It's one of the reasons DS stopped being able to go to school by taxi - he just couldn't get up and going for 7.20 pick up as a 15 year old with clinical depression. It was ridiculous. With hindsight I should have fought for a later drop off but I think I was too down in the weeds with it.

ISaySteadyOn · 12/10/2026 13:30

Ironically, mine all prefer the colder weather so you would think that would make it easier.

Luddite26 · 12/10/2026 13:59

I was just going to say the same as @2x4greenbrick. you may have to let that shop sail.
The good thing is there is a lot of support to get kids through GCSE post year 11.
you may have to just forget it this year.

Also @Leafywool sorry about DD. I hope it's a wobble from being poorly. Anxiety is a nightmare and you are better getting help with that. My DD now 29 who left school in Y8 with EBSA is still crippled with anxiety. get as much help as you can now. CAHMNS were dreadful and some days she can't leave the house. I really do hope someone reaches out soon you did the right thing emailing sendco.💐

OP posts:
Jimmyneutronsforehead · 12/10/2026 14:27

I just want to say I pulled my big girl pants up and I've sent my proposed amendments through, removed all wishy washy quantifiers, highlighted assessments that they're still using to initiate interventions with that are over 2 years old, really gone deep with explaining how EBSA affects him, photocopied and supplied every single last shred of medical evidence and concisely summarised it into 22 pages for us to discuss tomorrow in our 45 minute time slot.

I've got enough adrenaline coursing through my body that scientists are going to descend soon and abduct me to see if they can use it as a new renewable source of energy.

My hair is greasy, my armpits are smelly, I really wanted to use this time while he was at school to have a wonderful uninterrupted everything shower and perhaps even shave half of my legs but I persisted and powered through and put my best foot forward for an amendment proposal.

Meeting is tomorrow.

Thank you @2x4greenbrick because your highlighter trick saved the day.

My eyes hurt now.

Luddite26 · 12/10/2026 14:30

matron on DD's ward had a go at her saying she should have got her MH sorted out in her childhood. If only it was that easy. DD had meningitis when she was 14 weeks I always thought it stemmed from that.
But you can only do what you can do.
I don't know whether I spent too much time obsessing with school attendance then home ed then college instead of sorting out her MH with the non existent magic wand. camhs just said she'd be ok if she didn't live with her dad.

OP posts:
Luddite26 · 12/10/2026 14:33

I guess the seasons are different wherever you live in the country the further north the darker it gets later on a morning. and south the hotter it is in the summer which I hate and just can't function thank goodness for Yorkshire Autumn but GS8 has changed into joggers this morning and he's been in shorts since March as he's always warm and sensory apocalypse.

OP posts:
Jimmyneutronsforehead · 12/10/2026 14:45

We live with my nan who is always cold. The heating is always on and she'd happily have it a roasting 30° year round if she could. Our radiators never go off, even in summer.

I'm fortunate that our window is broken in the bedroom, because we do experience some reprieve from it but it can be bloody baltic on a morning and then you open the bedroom door to the rest of the house and it's like stepping out of an aeroplane in a Mediterranean country.

Thankfully we've settled at 25° but she'll still say she's cold or say there's a draft. The rest of us are shrivelled up like prunes, but DS rarely wears clothes in the house anyway so he pulls the I'm alright jack pull the ladder up card.

2x4greenbrick · 12/10/2026 15:19

@Jimmyneutronsforehead good luck with the AR meeting.

DS1 struggles the weather in general. Too hot, too sunny/bright, too cold, too wet, too windy, hates thunder and lightning, hates snow, hates the dark. He has a very narrow tolerance for just right.

ISaySteadyOn · 12/10/2026 15:28

@Jimmyneutronsforehead wow, that sounds like an amazing amount of work and organisation. You have done a fantastic job.

Jimmyneutronsforehead · 12/10/2026 15:35

@ISaySteadyOn I feel sorry for the poor senco I've sent it all to.

I never know how to write a short document.

Piony · 12/10/2026 16:34

well done @Jimmyneutronsforehead!

@Luddite26 pretty awful if a ward matron thinks all adults should have outgrown all mental health difficulties. Sometimes people are just so wrong I don't even know where to start.

Luddite26 · 12/10/2026 16:50

astounding isn't it @Piony ! I told DD to speak to someone as it's MH problems have affected work. don't think she will listen just gets worse and unfortunately I can't send matron one of my 'notes'!

OP posts:
Leafywool · 12/10/2026 17:31

Well done @Jimmyneutronsforehead we all know how much of a feat that is!

I was thinking of getting one of those daylight alarm clock things for her to see if it helps. It certainly doesn’t help that she has to be up at 6am and leaving at 7.10am to get the train, as the next train gets in just too late. I’m in West Yorks and on the train home from work now, and it’s getting dark already 😑

I’m going to do some research to find a therapist who specialises in autism and school based anxiety. I assume such a person must exist. We were put on the CAMHS waiting list at the start of the year but she definitely won’t be deemed unwell enough for them. I’m not sure what else we can do apart from therapy - if anyone has any suggestions they would be more than welcome. I asked DH to speak to DD and see what she thought about therapy and she said she ‘doesn’t want to talk about it any more’ so I’m going to quietly research and leave her out of it for now.

Leafywool · 12/10/2026 17:32

Luddite26 · 12/10/2026 14:30

matron on DD's ward had a go at her saying she should have got her MH sorted out in her childhood. If only it was that easy. DD had meningitis when she was 14 weeks I always thought it stemmed from that.
But you can only do what you can do.
I don't know whether I spent too much time obsessing with school attendance then home ed then college instead of sorting out her MH with the non existent magic wand. camhs just said she'd be ok if she didn't live with her dad.

Gosh that is awful. She makes it sound so simple!!

Jimmyneutronsforehead · 12/10/2026 17:44

Leafywool · 12/10/2026 17:31

Well done @Jimmyneutronsforehead we all know how much of a feat that is!

I was thinking of getting one of those daylight alarm clock things for her to see if it helps. It certainly doesn’t help that she has to be up at 6am and leaving at 7.10am to get the train, as the next train gets in just too late. I’m in West Yorks and on the train home from work now, and it’s getting dark already 😑

I’m going to do some research to find a therapist who specialises in autism and school based anxiety. I assume such a person must exist. We were put on the CAMHS waiting list at the start of the year but she definitely won’t be deemed unwell enough for them. I’m not sure what else we can do apart from therapy - if anyone has any suggestions they would be more than welcome. I asked DH to speak to DD and see what she thought about therapy and she said she ‘doesn’t want to talk about it any more’ so I’m going to quietly research and leave her out of it for now.

I don't know if it's possible, but I was diagnosed with the south and west Yorkshire adult adhd and autism service and my occupational therapist was fantastic. I really think she made a difference to my life.

Anything she didn't have the answer to, she went and found the answers to it, including who the next in line should be for getting appropriate support, even if it was through payable services or charities.

Obviously, that's the adults service. Childrens services may be wildly different, but is there anyone in her existing diagnostic team who has some sort of occupational therapy background who might have appropriate links to external clinical support you can access, even if you have to pay for it out of pocket? CAMHS are absolutely swamped so it's understandable that you'd want help sooner.

My brother was also on the CAMHS waiting list for mental health support and then was told right as he got to the front of the queue that because he is neurodivergent there wasn't anything they could offer him for mental health support and just got referred to iapt. He's 21 now, had a few years off and has got a zest back for education but as soon as things start getting hard he flip flops and says it's the wrong course, teachers hate him, it's making him depressed but he was diagnosed before 18 so he's also not under the adult services either so doesn't get the same support I was offered.

2x4greenbrick · 12/10/2026 18:07

@Leafywool are you looking for someone in person or online?

Are you looking for more traditional clinical psychologist sessions or something which relies less on verbal communication and/or taps into interests?

Does DD have OT and SALT? They can be just as important as CP, and in some cases more important.

Are you still appealing the EHCP? If so, therapies can be part of the appeal (and if you are going to use a professional, it is worth checking if they will write a report for Tribunal). Then you don’t need to sit on the normal waiting list. If you are appealing, I would prioritise an EP assessment over a CP.

Would transport enable DD to leave later than if she gets the train?

Leafywool · 12/10/2026 18:35

@Jimmyneutronsforehead She was diagnosed back in 2024 with a private provider over in Chester so not local (CAMHS refused to put her on the waiting list for autism assessment due to ‘insufficient evidence’ 🙄). I am not against trying online sessions if we have to so might contact them for advice as they were fantastic with her. Part of our appeal with her EHCP is about the fact they didn’t commission OT or SALT to assess her, only an EP. I know we could pay for these but at the minute it’s very much picking and choosing what we can afford to pay for. Current choice is seeing a paediatric rheumatologist to investigate her for hypermobility syndrome as we’re struggling to get anywhere with the NHS. I def think it’s worth us doing OT/SALT ourselves but might have to wait until next year. I’ve also just looked up the cost of a highly recommended therapist locally so that might also be out of the question for now 😱 We are lucky that we can afford to do things privately to a point. I feel for those who have no choice other than what they can access through the NHS etc.

Leafywool · 12/10/2026 18:42

@2x4greenbrick How funny, I’ve pretty much just answered most of that in my post just now 😄 This has been helpful with working out what the priority should be with regards to assessments etc. We sent our appeal last week (a day before the deadline!!). I guess what I’m looking for right now is specific help with her managing her anxiety, as it’s ruling her life at the moment.

We did discuss transport before she started and she was dead against it. Although I don’t think it would give her more time regardless as the school is only 10 miles away in distance but takes an age when driving as you have to go over the moors. Also I am not 100% that she would qualify for transport - I believe it won’t be approved as we named the school as our preference and it’s not the closest option. That may be wrong though, I am just going off a discussion I had on our local SEN parenting group as I asked about transport before she started.

2x4greenbrick · 12/10/2026 19:55

Just because the school is your preferred school doesn’t mean you aren’t entitled to transport. That is an unlawful policy LAs like to roll out. If the school is named outright in the EHCP, it is the nearest suitable qualifying school. That applies even if there is a nearer school. If the school is named in section I with a caveat about being parental preferred and you being responsible for transport, this should be part of the appeal.

Have you looked at charity funding for reports for Tribunal? The obvious one to try is Parents in Need, but there are others. If you want any recommendations for EP, OT or SALT for Tribunal, do shout.

I know you said funding ongoing support now might be out of your reach, and it is for many, but if you do want any suggestions for CPs for now, feel free to ask about that too. Even if you are primarily looking for a CP to help now, before going with them, it is worth considering if they will write a good report for Tribunal.

Leafywool · 12/10/2026 20:37

2x4greenbrick · 12/10/2026 19:55

Just because the school is your preferred school doesn’t mean you aren’t entitled to transport. That is an unlawful policy LAs like to roll out. If the school is named outright in the EHCP, it is the nearest suitable qualifying school. That applies even if there is a nearer school. If the school is named in section I with a caveat about being parental preferred and you being responsible for transport, this should be part of the appeal.

Have you looked at charity funding for reports for Tribunal? The obvious one to try is Parents in Need, but there are others. If you want any recommendations for EP, OT or SALT for Tribunal, do shout.

I know you said funding ongoing support now might be out of your reach, and it is for many, but if you do want any suggestions for CPs for now, feel free to ask about that too. Even if you are primarily looking for a CP to help now, before going with them, it is worth considering if they will write a good report for Tribunal.

Ooh interesting re the transport entitlement. I honestly didn’t know that. I feel like now I should just assume everything the LA tries to do is unlawful 😄

Ive not looked at charity funding as I assume we won’t qualify for anything. I earn a decent salary and DH earns double what I do but under his ltd company. We have a very complicated situation where we have another business which is failing spectacularly, so despite the good income it’s all being decimated trying to keep that afloat until we can close it next year. So on paper we do good but not so much in real life. I will definitely look into it though just in case.

Sorry if this is a stupid question but what would a CP help with? Would they just assess dd’s needs and write a report? I guess we do need that but I am not sure what to do in practical terms of generally helping her with anxiety (ie talking therapy or something else appropriate?). Or is that something a CP would also help with?

We did have a good chat with her just now and I’m just so sad for her. She said again, like she always has, that she doesn’t want to stop going to school because she really wants to be in school. She can’t pinpoint what is different between last week and now but she did say she wish she hadn’t gotten ill because it’s thrown her out of her routine. It’s interesting she’s said that as this is pretty much how it all started in Y7 - she got ill and was off for a few days then could never manage to make it back. I’m not sure how to fix that though as everything I suggest is wrong and won’t work for XYZ reason.

2x4greenbrick · 12/10/2026 20:51

I wouldn’t rule out charity funding just because of your income.

Always being sceptical of what the LA tell you and checking if it is actually true is a good lesson to learn this early rather than years down the line.

As well as specific therapies such as CBT (adapted, hopefully), DBT, EMDR, etc. CPs can offer more general psychoeducation around things like emotional literacy, window of tolerance, grounding, helping develop a toolkit for when become dysregulated, looking at ways to prevent a repeat of burnout, managing demand avoidance, narrative work. There’s much more to it than that but you get the idea. Some CPs can undertake less traditional work such as animal-assisted therapy.

It depends what you want. A CP can just undertake assessment work, so e.g. assess and write a report. But they can also be involved on an ongoing basis. Some only offer the former, some only the latter (although it will still involve some assessment in order to be able to treat, it won’t be a full in-depth assessment and report).

Then there is the indirect work. So things like working with you, school, other professionals, updated advice and information and writing a report for MDTs/ARs and attendance at meetings.

Leafywool · 12/10/2026 20:57

Brilliant thank you @2x4greenbrick, excellent advice as always! You’ve given me lots to think about 🙏🏻

Luddite26 · 13/10/2026 06:21

I hope after your talk @Leafywool DD may manage it today. fingers crossed for her.💐

OP posts:
ISaySteadyOn · 13/10/2026 06:39

@Leafywool good luck to you today. Everything I say is wrong and won't work happens to me too. She says 'Mum, do you not think I have thought this through?' because she is still 13 and I am her mum and therefore stupid.