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.

Oh yes, I forgot about Timmy Time but we used to watch it all the time. It was instrumental in helping DS develop language. Timmy Time, Yakka Dee and the Twirlywoos were definitely impactful screen time.

I was a screen free mum, but I relented when ex DP put on this fast paced repetitive youtuve kids programme and DS started mimicking noises after years of him making no progress from us just narrating or reading books or trying to have conversations or even baby talk, so I relented.

It's taken a long time for him to move up the gestalt levels, but I felt guilty letting him have screen time in the early days. That guilt passed very quickly though and we decided to get a kindle so he could watch videos when he felt like it, and he started speaking in phrases he had heard on videos and we had to decode what he meant but they massively helped in providing functional language we could work on. It just seemed to go against all the advice we were ever told about not giving young children access to screen time and screen time being bad for language development.

It just goes to show that there's no one size fits all model of bringing kids up.

Haha we used to love Timmy Time too! What a blast from the past. I still know all the words from the theme tune.

Thanks for well wishes on dd new school. She’s definitely up for it - looking forward to choosing new shoes and school bag! Her old school was just sweater and trousers and new one is full blazer, tie and skirt vibe so that will be interesting. They are also very strict on hair and makeup, so we will need to dye her currently bright red hair and I’ve warned her she can’t wear her usual eyeliner 🤣

Ive discovered today that one of the boys from her primary school class goes to the new school too. He is also autistic but higher needs than dd. I spoke to his mum and she said he’s not in the RP, just in mainstream, and the support has been amazing. She said there’s been no need for them to try and get him an RP place at all, so that really does make me feel much better about it all. It’s nice to know dd will know at least one person there too.

That's great @Leafywool !

@2x4greenbrick I cannot thank you enough for that list. DD1 just sat down with me and looked through it and we found a few places we are interested in asking more about. I think she was very relieved to find that there really are other ways. It's also taught me a little more about how to look for things outside colleges.

@Jimmyneutronsforehead I think the all or nothing approach to screens is a little misguided and ends up leading to motherly guilt (as if we didn't have enough already). I always felt it was more about the quality of what you watch. And the BBC is pretty good for this. So I will leave you with another recommendation and one my lot still ask for when they are ill sometimes: Andy's Dinosaur Adventures.

We've got a parking dilemma at the new school.

The school doesn't have a visitor car park it only has a staff car park which last week we were told it's fine for us to use and have been using since.

Today, we were told it's not fine, because it actually belongs to the other school so even DSs school staff can't use it, despite both schools being owned by the same trust.

It was the afternoon transition session so we got to experience pickup at peak time and it was HELL.

The streets outside the school are just narrow residential streets with very little kerb space but cars were double parked all along them with a lot of unpredictable pulling in and pulling out. Cars parked across residents driveways, parked all around the roundabout outside of the school and the closest parking space was over half a mile away, maybe even a mile.

The school know DS elopes and they've said many other kids do too. We can take DSs buggy to do the walk, but he's almost 8. He's a tall lad, and sometimes the transition getting him into the pushchair ends up with kicking and screaming, trying to grab onto people's car door handles, lampposts or bins as we walk past, and it's one of the bog standard SEN buggies that aren't really ideal for kids who might flip the pushchair backwards.

We did get access to the car park after saying there was no on street parking that didn't restrict residential or emergency access but can't help but feel something wasn't considered here when they were in the planning phase and haven't considered the population of disabled pupils needing different access requirements to the adjoining mainstream school.

I've raised it with his teacher, and I can imagine after today I won't be the only one raising it so I am not going to let it stress me out too much. It is early days still. I just hope they can work out these teething issues before the children start full time in October.

What lovely updates. @Leafywool we also know DC who thrived in MS at a school with an RP after other schools failed for them. I really think that the understanding filters out into the the rest of the school. At least 2 of DS's MS teachers were autistic themselves, and both deeply insightful. Rather them than me, running a whole classroom.

@Jimmyneutronsforehead congrats on the cinema success! Reading through I wondered if it might help to give him a last minute choice - arcade or cinema - so that he has some control without the anxiety, but you didn't need it. Every time you post you show a bit more of how tuned in and responsive you are to him, it's really amazing to read. I wonder if him talking about the dog was a sign that he was relaxed. You need to be regulated before you can think about and communicate something abstract perhaps.

DD did her first baby sign in front of In the Night Garden. Different forms of screen watching get lumped in together, but you putting on something carefully chosen, recognising and responding to his gesalts from that is light years away from plugging a 2 year old into YouTube and walking away. There wasn't so much demonising of screens when my two were little and it was normal to put ITNG or Teletubbies on for a bit. I used to pick out programmes with mainly white backgrounds and I put quite strong limits round it as DS does not cope well with people changing the rules.

@ISaySteadyOn @2x4greenbrick what a helpful list and fab that it was such a help to DD. Not that she needs to go to uni but there are still courses around that recruit largely from portfolio I think, and routes in via Access courses, uni foundation years and sixth form art foundation years. We have been talking to quite a lot of people lately who have found less conventional routes in, and it always seems to come back to them finding something they are really passionate about. I am just not sure how we find that for DS.

@Jimmyneutronsforehead that does sound like a nightmare. Traditionally children in SEN school will often come in by taxi or minibus so it's much fewer vehicles but I guess transport is getting harder to get. It sounds like the school might need a different start and finish time, but that could be difficult to change.

@Jimmyneutronsforehead I’m glad the cinema went well. Can you drop off/collect 10 mins before/after the other school finishes? I am surprised the school isn’t staggering start/finish times, anyway. You could look at a more sturdy SN buggy/wheelchair. DS1 is a teen and has a wheelchair but prefers his SN buggies (long story why we have two) - he has a delichon delta and axiom phoenix. When he was younger, he has a specialist tomato jogger and an Ormesa bug; depending on your DS’s size, he might fit those still. Or would a harness work better for DS?

@Leafywool good luck with starting the new school.

@ISaySteadyOn it is lovely to hear DD1 is showing interest in looking at possibilities. That initial step is such a big step. If you don’t find anything that will work, feel free to shout because there are some other places I know of who do art qualifications - I just didn’t want to overwhelm you with even more suggestions. If you ever want suggestions about qualifications for other subjects, feel free to ask about those too.

@Piony what does DS enjoy doing?

Not a programme for very small DC, but can anyone remember Bernard’s Watch? DD1 watched it. I always thought, and still think, such a watch would be brilliant, especially for SEN parents, if it existed.

I think the start times could already be staggered but I don't think they're staggered by enough if they are. I haven't seen the other children entering or leaving the building but there's still a lot of double parked traffic with engines idling.

We've been looking at funding for a better specialist pushchair, but I'll be honest I've just never gotten round to chasing it up because we don't really use the buggy he has mostly because tipping it up is the least of our worries when he's in it. It's the clawing at absolutely everything and everyone we pass in a bid for freedom. He won't do reins of any sort he just drops to the floor like his legs are made out of jelly. It feels like we need a straitjacket just to leave the house.

I know it's also not the schools or LAs problem to resolve but I have ME/CFS, autism, hypermobile spectrum disorder and dyspraxia and a long walk one day could mean I can't walk the next day. Before I accepted the school I asked is there on site parking, does it have disabled bays etc. and was told yes. I knew it was a very limited number, but the answer was yes, and then today it's changed to no because the barriers are controlled by the other school and the car park is designated to them.

Even with a pushchair though I think it's been badly thought out because the cars are having to park all the way up on the kerb, so pedestrians are having to cut into people's front gardens and I imagine that has been a long standing issue that has been present before the opening of the new school as the space was occupied as a nursery before the new school took over.

that sounds really difficult. As a dyspraxic person myself, I can empathise. Also, I am impressed that you drive! I can't (like school attendance, it's can't not won't 😄).

Oh I can't drive lol. I am a passenger princess through and through.

Visual motor coordination is on the 2nd centile for me so I don't think driving is ever on the cards. My occupational therapist came to our house to watch me make toast and her face had subtitles, it was that bad.

We live with my nan and my uncle who are both carers for us and facilitate us living together. My uncle has always taken responsibility for me though as a child my mum was a single full time working parent so anything a dad would do, my uncle has done it and he absolutely dotes on my little boy so he chauffeurs us everywhere and often carries my little boy but recently his shoulders have started dislocating when carrying heavy weight so we suspect he is likely hypermobile too and it's not practical for him to be carrying my little boy anymore as he's getting quite big. Very short distances are fine like from the car in the car park to the front door, but certainly not down a street.

@Jimmyneutronsforehead your uncle sounds amazing 😃 I’m sorry about the parking situation, I would be very stressed about that never mind with everything else you have going on health-wise too. I hope they manage to sort something out as another barrier to getting him there is absolutely the last thing you need.

He is absolutely amazing. I don't know where we would be without him.

Now I've slept I feel I can laugh about the figurative and literal barriers to accessing school.

Why have a school within a school for disabled children who all have access needs and no means of controlling the barriers?! It's like having a wheelchair support group on the top floor of a building with no lift.

At least I know I am far from the only parent at this school with this issue. We don't have any more transition days until Monday so they've got plenty of time to figure this out.

@Jimmyneutronsforehead the school should be making reasonable adjustments for you too.

Have you thought about school transport?

A note on carrying/lifting DS. Please be careful. My DS1 is a teen now and has some physical disabilities. My back is wrecked. I regret not looking after it better.

He does qualify for transport and we will be putting in an application once we feel like he's settled at school but atm we're just worried it's another change and another transition. I'm even happy with us doing the drop offs to school if they can coordinate the return home, but I've not talked to anyone about what happens or how they cope with wriggly houdini kids who are fine and still and calm on the journey with a 180° flip at school.

Transport can use harnesses if necessary.

When you apply for transport do you get to sit down and have a meeting with the person or people that will be the regular transport to explain what challenges they might encounter?

Another big issue he has is his radio silence that seems like he's quite content and then sudden random thrashing, kicking and squeals that can knock bats out of the sky and it can be a huge driver distraction. We are so used to it, but when I've taken him in taxis before we've had drivers slam the brakes on and I've been asked what the hell is happening. This happens even when he is happy, so it's not a case of de escalation that's needed.

I'm sorry I don't know anything about transport or much really. I do feel you aren't getting the support you should be getting. Have you a social worker?
I know all resources are dire and stripped. You are doing amazing. And your Uncle sounds lovely. sorry to be of no help though.

I don’t know anything about transport either, apart from on our local SEN parenting network group on FB (not sure if you have one of those in your area @Jimmyneutronsforehead? It’s quite useful for asking questions!) there’s very positive feedback about the transport service here. Lots of users who are very happy with it, which did surprise me actually as it seems to be a rarity that a service is well run! I also know there’s a 6+ week waiting list here after you apply so might be worth looking in to now, as your area may also have a wait time.

I have got a social worker but my son doesn't. I was referred for a needs assessment last year and I was promised an awful lot that didn't materialise or relied on me living independently already before they could assess again which was a big risk. I was told I could also refer myself as a carer for a disabled child but we've just muddled along really and I think we'd face similar issues while my family are supporting us. The general gist of meeting with the social worker was get into council housing or supported living, or wait until existing caregivers are incapacitated and ring them back.

@Leafywool I think there is a wait round here too. Aside from the potential street hazards and knock on effects I do like doing the school run with DS. I'll contact the transport team and see if I can find out what their wait times are and hopefully if the school know there's only a short time we will need to use the car park they might be amenable to us using it. I just can't wrap my head around how they were able to permit us using it in the first place if they're saying it never belonged to them, even though it belongs to another school under the same trust so somewhere up the chain they must be able to give permission.

@Jimmyneutronsforehead I don't know what is possible in your LA and my child is older so it might be different. We have only had taxis (mix of driver and driver plus assistant) and for these we are given the taxi company's school transport coordinator's details to sort it out with them directly. Minibuses & primary age might be different, other LAs may be more involved. obviously need to be super careful with children who are flight risks.

Minibuses and taxis do fill up though so I would have thought you are better getting him a place even if he then has to build up to using it. If he can't cope with a minibus and needs a taxi then so be it.

Transport can be a bit all or nothing. You can ask for a place pm only, sure, but it's very unlikely that another child is using that same minibus or taxi a.m. only, so if he gets a place for p.m. his seat will probably sit empty every a.m. You might as well use it if he can manage that. It won't cost them any more as they are running the vehicle anyway (unless he has a solo taxi). But if it needs to be PT for his sake then of course that is fine.

@2x4greenbrick DS is ace at maths and loves his sport. We are looking at options round that but it's very niche. Even the British team maintain separate careers.

@Jimmyneutronsforehead "I just can't wrap my head around how they were able to permit us using it in the first place if they're saying it never belonged to them". I would put this down to someone pragmatic making what seemed like a common sense call based on their judgement and DS's clear needs, but not based on perfect information. No one really knew (or at least. that person didn't know) how verboten it would be until it was tested.

@Jimmyneutronsforehead sometimes you get to meet the driver (and escort if there is to be one) beforehand, sometimes you don’t.

A risk assessment should be done beforehand and what you describe could be included in there.

There shouldn’t be a waiting list. That isn’t how the transport rules work, even if some LA would like it to work like that.

Even if you don’t want transport to be provided, you should ask for mileage instead.

On their website, Contact has model letters you can use to can request social care assessments - a carer’s assessment for you and an assessment of DS’s needs by the children with disabilities team. I would request an updated needs assessment for you, too. It doesn’t have to involve you living independently, council housing or supported living.

@Piony I think you said DS is at sixth form? What level of course(s) is he doing? Is DS’s plan to go to university? Some universities offer a foundation year. You can do maths and sports science joint honours degrees. DS could then look at being a sports scientist focusing on the biomechanics of sport (or is it pure maths DS enjoys?). Or a sports data analyst.

thanks @2x4greenbrick , yes double maths A levels which suit him. He is just not open to more education at all, which is understandable but tricky. I should be pushing for AR this term really as end of Y13 is the ultimate transition year, but he's so shut down about it. We could really do with A levels lasting another year - which college would be fine with but DS is not keen on.

It’s not maths, but for sport, would DS go to a sports or outward bounds AP? It wouldn’t have to involve working towards sports qualifications although some do offer them.

Or a supported internship relating to sport?

I have read a piece by a man called Dominic Salles on Substack called
How To Cure The EBSA Epidemic.

If anyone has time or inclination to read it I recommend a look. It is addressed to schools giving them successful strategies.

If anybody does get chance to read it I would be interested in their thoughts.
The strategies are very much similar to positive experiences which people have written about on here.
I don't think there was advice to parents!
I don't want to really comment on it unless any body else does I don't want to say how I feel without hearing what anybody else thinks to it.
I don't want to prejudice people's thoughts and focus on one point.
but if anybody does get chance to read or listen let me know your thoughts please..😁