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.

@ISaySteadyOn DS has found the energy accounting concept & video useful here: https://www.autism.org.uk/advice-and-guidance/resources-for-autistic-teenagers

It doesn't really give any answers but it gives a sort of language that you might find helpful to explore it with DD. Having all 3 of them struggling with attending school is immense. I honestly don't know how you do it, and I know the answer is that you don't have a choice.

@Luddite26 I'm sorry you've been feeling like that. Your reaction - let's go to a castle - is quite inspiring. I feel maybe there is a lesson there for all of us, though at the moment I can't see us managing that.

@Leafywool still walking that knife edge. If there are any subjects that rotate (DT, music, drama?) they might be more acceptable to miss as she could just start the beginning of a new rotation in another couple of weeks without having missed anything maybe? When DS started I think they coordinated with class teachers so he was in the room for the start of new topics rather than starting going in towards the end of an older topic. But being flexible like this is a "shades of grey" thing which I imagine makes it harder for DD to accept.

sending solidarity to you both @Leafywool and @ISaySteadyOn.
GS8 just crashes out after any sort of exertion out of his comfort zone. it's like a crash of the nervous system. I really hope DD can sleep tonight. just fingers crossed for you all.

it's not your fault @ISaySteadyOn. we aren't in on the straightforward path but it's not because of how you have done things. you can only do your best and just keep going.
I'm sure hormones play a part in it all too for us and DCs.

@Piony thank you for that! Very helpful 😃. Fwiw, atm, it is only two struggling. DS is working very hard at going to school and I think for him it is paying off.

Thanks @Piony.
it was on the list of to do this week because we needed some wooden swords and I had seen them there but needed sensory approval.
I think my point is we are conditioned to getting the work done then having the fun but these kids don't respond well to that and I need to remember Monday morning is not for work books as we just sit getting nowhere the nervous system just does not work well and the simplest sums etc just can not be done.
It was like fate meeting the young lady because she spoke to the boys about her special interests and they enjoyed the conversation which is great for the ASD crowd isn't it. they are labelled as antisocial but they love a good chat.
going to get some work done after tea that usually works well at this age.

it is hard anticipating every mood and changing how we have been conditioned.
at least the weather is better than it could be and we are getting chance to get out

Thanks @Piony, it is hard as those as the subjects she enjoys most. We did have a quick chat with one of the DT teachers as we were passing and she explained dd would either be doing textiles or cooking, and we checked her timetable and textiles is her first class tomorrow which she’s very happy about. But catching up is one of the things I am massively worried about - not in terms of her not being able to catch up, as she’s very smart and won’t have a problem with doing that - but I think it’s going to be a source of anxiety when she’s in a maths class (for example) and they talk about something learnt in Y7 which she’s obviously missed the whole year of. I did mention this today in our meeting and said we are more than happy to do extra work at home if any gaps are identified. They have taken her out of PE and she will be in the Sendco area instead (she would have had double PE first thing Monday morning so I think she’s extra glad about this 🤣), and she will be able to complete her homework then which opens up some time at home for any extra bits we need to work on.

I think it all stems from her not wanting to be different or stand out in any way. She thinks people will think she’s weird if she’s only there for mornings etc. Which obviously they won’t think, but it’s hard to get through to her when she has an idea in her head. We also talked about speaking up when she’s struggling and she finds it so hard, so she will just keep quiet then no one ever catches on that she’s upset or unhappy. It’s something we need to work on but I don’t really know what the solution is. The help is there for her but they can’t help her if she won’t advocate for herself. Even if someone checks in with her she just says she’s ok. Not sure if anyone has experience of this and has any suggestions at all?

She’s come downstairs happy as Larry dancing about, and is excited about getting her stuff ready for tomorrow. I honestly can’t keep up with the emotions!!!

Thank you @Luddite26she did wake up after her nap instead of grumbling and trying to go back to sleep so I hope she will get to sleep ok tonight 🤞

@Leafywool I think our DDs would get on once they figured out how to talk to each other! 😄 They seem to have similar approaches and anxieties. I guess we can at least tell them they are not alone.

Had a successful Monday today although DS hada 40 minute nosebleed this morning so he thought I was a bit of a bitch for still sending him to school.

Wasn't hopeful as we had quite a traumatic Saturday, Saturday bled into Sunday and I was dreading today.

Our GP did their annual flu clinic this Saturday and they had us in the under 65s queue, we got to the front and DS tried eloping back to the car and the nurse basically barked at him "come on, I haven't got all day, I'm very busy!" so I carried him into the room and explained rather bluntly with a face that had subtitles for all of the expletives I wanted to shout that DS is autistic and he needs calmness to settle.

Then she decided to start tickling him?!?! Like jesus christ you've just yelled at him now you're touching him when he's still trying to climb up my body.

Then she said she can't do his nasal flu vaccine as he's too worked up. No alternative date or time offered, can't get nasal flu vaccines in the pharmacies around here and the school haven't set up the school flu clinic and probably won't have chance this year.

Screaming and crying lasted all day and night, nobody slept, wrote a complaint and sent it off to the practice manager while I was particularly worked up and dysregulated myself so good luck to the person that opens that email because it wasn't my most diplomatic email, and then Sunday we had a house full of visitors like a revolving door and ended up with 12 people in our living room at one point. I'd mentally written today off, but other than the nosebleed this morning everything went so well, and DS has used the bathroom more times than he's used a nappy today so we're winning!

@ISaySteadyOnYes they do sound similar!! 😄 I always wish DD could find some friends who were a bit more like her!

@Jimmyneutronsforehead Oh gosh your weekend sounds stressful and that nurse was awful!! But getting him in today happily after all of that AND a long nosebleed is absolutely incredible 🥳

I was thinking of you both @Jimmyneutronsforehead. what an awful experience with the nurse. I'm amazed, and very glad, that you have had such a successful day today. Nosebleed aside of course. You really are due a breakthrough.
My granddaughter had a lot of nose bleeds from about 5 till 9. One particular heavy one started as The Queen's death was announced on the radio she was in the back of my car and blood began to pour out. It was a moment of chaos we still talk about.She seems to have stopped having them now they can really be a thing for sometime can't they.

Fingers crossed tomorrow for some good vibes for everyone.

@piony has your son got settled back in this term? How are things going and what is the next step?💐

@Luddite26 he was supposed to go for cautery but it cleared up for the 6 weeks before his appointment so we decided not to go ahead as hospitals are a nightmare with him. They also said if it goes on for more than 10 minutes I'm within my rights to take him through A&E but that's worse than going through outpatients, so the hospital have said if we think we can manage at home and it's not buckets of blood we are OK, but I think it's artificially worse because he won't stop bothering his face once he notices the blood and he's got really poor blood clotting.

I did forewarn his teachers that when he has one nosebleed he will have more because the attention has been drawn to his face and just lob tissue after tissue and call us not an ambulance and they seem to be in agreement for now, but I know it will happen at school one day and someone somewhere will just follow protocol and call an ambulance.

I could do with finding out how to get a hospital passport for him, mine was done through my OT but the only in person OT contact we've had is when they came to drop off a SEN pushchair. They were here for about 10 minutes and trying to get them back out for anything else is like pulling teeth.

@Jimmyneutronsforehead if you look on your nearest children’s hospital website, you can download their passport.I don’t know if it is your nearest hospital or whether you are near a border so go to one outside your area, but the hospital in the LA DS goes to school in has their health passport on their website. I promise I’m not a stalker, but under another name I posted on your thread about schools where you said your LA.

Both hospitals have learning disability and autism liaison nurses. You can find their details on the hospitals’ websites. These nurses can ensure DS’s additional needs are noted on his records, a copy of the passport is added to his records, and help with making reasonable adjustments for inpatient, outpatient and A&E attendances.

Alternatively, NAS have one here and Mencap has one from a different NHS Trust on their website here.

Thank you!

Stalk away, you can come for a cuppa if you like.

@Luddite26 totally l, we often do the "treat" bit before the tricky bit in various different ways. I love that your week started with needing swords. Thank you for asking about DS. He is doing exceptionally well, seems to be loving being a Y13 and is pushing his own boundaries homework and socially. A bit like you describe with your son @ISaySteadyOn , it is all his own decision which seems to make all the difference. But A level exams and what happens after are keeping me awake at night.

Funnily enough he was also napping when your DD was yesterday @Leafywool. He's been working hard and we keep expecting a crash but so far, so well managed by him.

@Jimmyneutronsforehead we have dealt with some severe medical phobia. One option might be going to a stand alone clinic run by the school immunisation team. Ours was amazing. We explained the problem when we booked and a nurse spent over an hour with DS, twice, trying to do his jabs. This at least avoided making the phobia worse, I think. It rebuilt some trust that had been lost in previous incidents. They seemed very much trauma informed and huge on consent. They run these clinics as catch up for children who miss school jabs for whatever reason. I'm talking about jabs, you're talking about a nasal spray but perhaps to your DS they are not so different.

I'm sure I have read somewhere that there is a link between nosebleeds and autism.

Good luck today to them all. I hope DD enjoys textiles @Leafywool. I think learning gaps are a big part of the challenge of returning. It's a vicious spiral if they have missed a lot and as a direct result they feel lost in later topics, that is such a negative experience that would put anyone off. The flip side is a virtuous circle when they do/can engage more and I wonder if @ISaySteadyOn's son and mine are tapping into that at the moment.

Not one for now but if tutoring/catching up at home is too much on top of school - as it absolutely would be for my DC - I wonder if she could drop one or two subjects for catch up tuition. Some schools pick out KS3 students who struggle with maths and English and they do extra maths & English instead of MFL. In theory you could work a similar idea with more specialist 1:1 input. Also consider whether some homeworks could be dropped to make more time for catch up work, eg homeworks for subjects she is unlikely to keep for GCSE. Though even dropping homework can make the classroom experience harder if the teacher does not make suitable adjustments.

DD2 a no again today. I don't think this school is working because I think she is an autistic child who is quite bright but just can't handle any school environment.

On a positive note, DS tied his own tie this morning and he was so proud of himself. He did a great job too. @Piony, I think our sons are definitely tapping into a virtuous circle. DS is even starting to do homework.

If it was a jab I think he'd have been fine, but he has got a lot of sensitivity about his nose. In the past he has panicked but kind nurses made all the difference.

He's an oddball, he loves needles. When he needs to have blood tests it's like a treat for him.

When we were in the childrens hospital for his allergen introductions, he was just starting to offer spontaneous language but he would get all muddled up so instead of saying hospital bed he said holiday bed and he thought it was fantastic we were on holiday and the bed had magic buttons with all the yoghurt he could possibly desire on tap albeit with varying degrees of egg mixed in, but he was most put out that nobody wanted to bandage him up or stick him like a pin cushion. You'd think he'd love A&E and the phlebotomy vampires.

Thank you @Piony that is really good advice! Much appreciated.

We have had an awful awful morning. I have cried on and off since 6am (obviously not in front of dd!) and feel sick with worry. She was so anxious and upset from the second she woke up and had a huge meltdown, the first one she’s had for months. I ended up driving her to school rather than her getting the train. She managed to snap out of it and got ready and she was ok on the drive over, then when we parked up she kept saying she couldn’t do it. I convinced her to go, waited around for a bit just in case then started driving home. I got a few miles away and she rang me crying saying the lady who was meant to meet her at the entrance wasn’t there and everyone was staring at her so she left and was walking on a random side road. The drive is over the moors on windy roads so it took me ages to find a safe place to stop and my signal was terrible. I told her she had to go back and go to reception and I called reception to let them know. Didn’t hear anything for 10 minutes so called again and they said they had met her, so she was there. She isn’t allowed her phone so I have no idea how she is. I’m gutted she’s got off to a bad start - one of things she was crying about last night was ‘what if they forget about me like they did at MNHES’ and it broke my heart, so I know the Sendco not being there like she promised will have been a big problem. It could have even been that she missed her by 30 seconds so I’m not blaming the school.

I am just praying there’s some small glimmer of good in her day so there’s at least some positives for her. I have told her not to worry about making friends or speaking to anyone this week, just focus on getting through the day and finding your way around. She’s so worried and anxious about getting lost and no one helping her ☹️ I’ve rehearsed what to say to people ‘I’m new and unsure where to go’ and she’s been reassured by everyone yesterday that all she needs to do is ask - obviously not easy for a girl like her but I’m not sure what else I can do.

@Jimmyneutronsforehead perhaps I should have said nasal spray for your son might be like a jab for mine! This may be a stupid question but why does he need to have the nasal spray if he likes jabs? Can't he just have a jab? DS once had this for the same reason, though it was a long time ago before his phobia started.

@Leafywool, @ISaySteadyOn oh your poor daughters. Look after yourselves too.

@Leafywool I’m sorry today started badly and the school let DD down from the off. I hope the day improves.

@Jimmyneutronsforehead alas, I’m not local to you. I am just aware of the passports/LDA nurses from helping someone else. If DS can’t cope with the nasal vaccine, it is possible for him to have the injection. You might get some resistance to this from HCPs who don’t understand, but it is allowed and it is possible.

@ISaySteadyOn sorry DD2 couldn’t manage school.

I’m sorry @ISaySteadyOn, it is just so so difficult for our girls. Amazing news on DS and the tie and homework though!

And thank you too @Piony and @2x4greenbrick

I heard from the staff member who was meeting dd this morning. She was there but I think dd was either so stressed that she didn’t spot her, or possibly didnt go through the doors of the building like we had agreed and just hovered around the entrance. But she said dd was chatty with her and her class welcomed her when she arrived. She’s apparently been sat with a nice group of girls and buddied up with them to help her make friends and find her way around. She said these girls usually come to the Sendco corridor at break (which is a relief because dd was worried about needing to go there and her ‘buddy’ not knowing where it is) but they didn’t today so hopefully that indicates they have had a nice break together with dd instead. The phone usage is really strict here compared to her last school so i am struggling with not hearing from her at all, but maybe it’s a good thing really?

Anyway I feel slightly better. I have stopped crying at least! Just bad anxiety and I am shattered 😴

@Leafywool your update has made me cry. uncontrollably. The bit saying about the girls who usually meet up in the sendco corridor at break.
How wonderful. I hope DD can join them.
All these poor kids just wanting a safe place. ❤️
isn't it all so unfair, there you are driving all that way . I hope it can work out.💐

I'm sorry @ISaySteadyOn. I wish school could just put it online for DD and take the pressure of going off.

so I know the Sendco not being there like she promised will have been a big problem.

@Leafywool I would put this down in a complaint to the school, just something matter of fact "hi school, the SENDCO promised to meet DD, they didn't, this is what happened as a result, there has been a trust breakdown, how can we collaborate here to improve the trust again?"

What a massive let down from the school though, and they've grossly ignored the accessibility issue.

@2x4greenbrick in a stroke of luck, new school have set up their flu clinic for this week and I have been able to book the injection instead of the nasal spray. I have asked school if I can be present, they've said no, chocks away to them then, but an injection will definitely go alot smoother. We have got some EMLA cream and spare clear gauzes if the school want to be extra prepared.

This morning didn't go very well for us but he did go in. A lot of hesitation as it was time to put our shoes on, crying and saying he wants to go to daddy's house/the bathroom/the bowling alley/"someplace else", then hesitation again at the school gates. We were lucky enough to sneak into the car park again, they've had to leave the barriers up for the transport minibus which looks to have come into effect this week so we are being really cheeky buggers, but if we had to park outside of school and walk in I don't think today will have happened. It's hard knowing where to draw the line of pushing him to do something uncomfortable because he might benefit from it and enjoy the day, or stopping before it causes new trauma and recognising that boundary.

I never seem to be able to get a chance to ask whichever teacher is on gate duty how things are going with him building trust with any adults or what they're doing to make school exciting so I can help hype him up about it because there's always someone else stood talking. I have sent his communication book in today though and asked this question so fingers crossed and we shall see if they read it.

@Luddite26 online would be worse as it would remind her of lockdown when her primary school decided to do online schooling for all those who weren't the children of key workers but they did it by doing it from the classroom..so DD could see a load of her classmates in her classroom and couldn't understand why she wasn't allowed. No matter how much I explained she hadn't done anything wrong, she still believed she had.

Here I am sitting in a park because it is a beautiful day and I see all the children coming home and that's all I want for mine. I used to care about marks and things but now I don't care. I just want them to go to school, hang out with friends, do their homework and whinge about it. I love them and I want to help but I also sometimes feel angry and I hate that I feel like that.