Please or to access all these features

SN children

Here are some suggested organisations that offer expert advice on special needs.

Advice/handholding/reassurance wanted: DME ASD kid with major school issues

16 replies

Londonwriter · 12/02/2023 19:48

We have a wonderful DS1 (aged 6) who is a dream at home. He is helpful, kind, polite, caring and protective of DS2 (aged 3).

I had no problems with him, even during lockdown with a young baby, except for a minor speech delay (resolved with three sessions of SLT) and he was tough to potty train. He was reading at aged 3 (shortly after he started talking in full sentences) and was doing 65-piece jigsaws at the same age.

We were, therefore, shocked when he was excluded from a small private kindergarten, aged 4, for - effectively - trashing the classroom every day. He was literally being dragged out the door by teachers kicking and screaming, and trying to throw classroom equipment. They told us to take him to a paediatrician, which we paid for privately due to long waiting lists, where he got an ASD diagnosis.

He’s now in his second year at a state mainstream. They are really struggling with him and applying for an EHCP. He is routinely throwing hard objects, biting and hitting teachers and other pupils. Last year, he got into a fight with a LD SEN kid who was in the sensory room, and her mother had to take her to A&E.

We’ve had him assessed by Potential Plus and it turns out he has an auditory processing delay, but is academically gifted (he has above-average verbal intelligence and a 1 in 1,000 non-verbal intelligence). He can assemble Lego Technic models, play games for ten year olds, and read sentences like ‘focusing the aperture with the objective lens’.

He is very sensible when he’s with me, including when we’re out and about in unfamiliar situations, incredibly curious about the world, mature beyond his years in many ways, and very capable of expressing quite complex ideas - including about his own motivations and emotional states. He reminds me a lot of the Young Sheldon character on TV, including the overly-serious manner and the formal sentences. We go on a lot of trips and, although I obviously make some accommodations (lots of explaining why we’re going places and avoiding unnecessarily crowded/noisy environments), he is dramatically less hard work than DS2 (who is a complete nuisance, but apparently neurotypical).

DS1 tells me the violent situations at school are often sparked by his desire to make friends with kids in his class, which are rebuffed, and by teachers asking him to do things he doesn’t want to do when tired. I’ve tried talking to him more about school, but he generally claims to be tired. I did suggest he was pretending to be more tired that he was to avoid these conversations, and the last time he sighed, and said “Yes, Londonwriter (he always uses my name, for some reason), I’m pretending to be more tired than I am because I don’t want to talk to you about this. Please leave me alone” and then went upstairs.

The school are putting tonnes of effort into accommodations, including a trampoline outside the classroom, 50% 1-to-1 time, sensory circuits, social skills classes, ear protectors, sensory toys and so on. They are applying for the EHCP to pay for all the support they are already providing.

I’m just really scared for him. He seems pretty happy at school right now, but I’m worried his mental health will suffer as he gets older. I’m scared we may have to move house and another school won’t be as accommodating. I’m also afraid he’ll end up being excluded for violence. I assume that he will start dropping support needs as he gets older, as he is so incredibly capable at home, but the school is constantly upping - not decreasing - the support he’s receiving. I’ve considered home schooling, but just don’t have the resources to make it work (and I feel he can’t spend his life in a bubble).

Just wondered if anyone else had had a similar experience, and whether they could hand-hold/advise.

OP posts:
JustKeepBuilding · 12/02/2023 20:05

Where are you in the EHCP process? If the school require more funding to provide more support whilst going through the process they can apply for high needs top up funding.

Don’t be too worried if the school do exclude. It will provide you with evidence of unmet needs for further support and allow you to formally challenge it if you don’t think it was reasonable and lawful.

Has DS been referred to CAMHS, SALT, and OT?

I assume that he will start dropping support needs as he gets older

I don’t mean to sound negative as some DC do require less support as the get older, but equally many need more. The support needed often changes but it doesn’t necessary decrease.


Don’t deregister. Parents often find it easier to get support when their DC remain on the roll of school, even if they can’t attend. That way the LA retain responsibility too. Crudely you are someone’s problem, whereas it is easier for professionals to sweep DC’s needs under the carpet when you EHE. The LA will also say by EHEing you are making suitable alternative arrangements thereby relieving them of their duty.

Londonwriter · 12/02/2023 20:34

The school are getting an educational psychologist to come in March to assess him. It’s a huge school that’s part of a large academy trust, so the LA told me the school provide/hire their own OT and SLT rather than using the council one.

My concern about home education (or not) is purely about his mental health going forwards. The school is doing everything I can conceivably imagine doing to include him. He seems very happy, but he’s constantly exhausted during the school week and frustrated around friendships. The school are reporting that his support needs are ‘extreme’ at school, but he’s a completely different child at home.

They are meeting his needs, but they don’t seem to know what to do next. They keep asking me for tips, but - obviously - as we all agree, looking after two brothers 1-to-2 is completely different from a busy classroom with 25+ kids with varying support needs. It helps that he gets on extremely well with DS2 - they are best buds.

OP posts:
JustKeepBuilding · 12/02/2023 20:40

It doesn’t sound like an EHCNA request has formally been submitted? If it hasn’t you need to do this yourself ASAP. IPSEA have a model letter you can use. You do not need an EP, SALT, OT to assess first. As part of the EHCNA the duty to provide/arrange assessments lies with the LA, not the school.

Don’t take the school or LA’s word about the EHCP process. They will tell you what they want you to know, not what should actually happen.

The school aren’t meeting DS’s needs. Otherwise DS wouldn’t be displaying the behaviour he is.

It’s not unusual for DC to present different at school and at home.

Do the school have anyone to deliver emotional literacy support and Zones of Regulation or similar? Are they providing support at break and lunch? They could apply for high needs top up funding in order to provide full time 1:1. Are they providing any other sensory support in the classroom?

SusiePevensie · 12/02/2023 20:44

Another DME kid here. It's complicated. DM me if you'd like?

Londonwriter · 12/02/2023 20:57

@JustKeepBuilding He can recite an entire textbook on zones of regulation and another textbook on his feelings and emotions. It’s like listening to a degree-level psychology textbook!

The problem is that he’s actually emotionally six years old and, although he understands zones in theory, and can say what zone he’s in, he can’t actually use the tools the school has provided to regulate himself in the moment. So, he bites people, has to be held physically, and then - after he’s calmed down - tells you “unfortunately, I lost control of myself and was in the red zone and unable to regulate, and so I threw a wooden jigsaw at [classmate’s] head, which was an accident, and then [teacher] grabbed me, and so I got very cross with her” (literally, whole sentences like that). It’s like listening to a very small, extremely eloquent serial killer… (in the nicest possible way - I love DS1).

He has sensory circuit upon arriving in school, the wellness room at lunchtime, and has 1-to-1 support for transitions. There’s apparently a trampoline in the corridor for his movement breaks, and a box of toys/Lego for emotional regulation. He has his own desk facing the back of the classroom and his own laptop for internet research. He apparently has a 1-to-1 50% of the time and ear protectors for gym/music. As he often won’t participate in classroom activities, they’re going to be doing project work with a 1-to-1 on his interests (space and animals) next term. They’re applying for the EHCP specifically on behavioural issues and they have been collecting documentary evidence of his academic ability by standing behind him with a camera when he is doing stuff at his desk on his own.

@SusiePevensie Thanks :) I’ll DM you :)

OP posts:
JustKeepBuilding · 12/02/2023 21:09

So have the school already formally applied for an EHCNA? It’s important you know whether they have or not, because if they haven’t you need to, and if they have you need to keep an eye on the timescales.

Reciting the textbook and knowing the theory is, as you say, rather different to putting the practices in to action in the moment, which he clearly can’t do at school. Therefore he needs more support with emotional literacy and self regulation in order to be able to. The school need to provide more support. It not that unusual.

DS1 needs more 1:1. The school need to look at supporting DS’s sensory needs better too. Has he tried a wobble cushion, sensory bands for the chair, or even an exercise/peanut ball or a rocker/bouncy chair? If DS struggles with noise why is he not using ear defenders/noise cancelling headphones in class?

The school need some urgent support with deescalation rather than being reactive. Have they asked for advice from the specialist teaching service?

Londonwriter · 13/02/2023 08:11

@JustKeepBuilding I’ll ask the school these things. I haven’t really been asking them anything about process because I can tell they are trying, and I’m also just so completely baffled about why his support needs at school are so high.

It’s like they take him with a 1:1 down the road and take stim toys and ear protection, give him lengthy social stories (in PECS…) for days beforehand, provide stickers, and are really nervous about whether he can go at all because of his extreme support needs.

During the school holidays, I pack a rucksack with a bottle of water and some nappies only, tell DS1 “we’re going to an airplane museum for the day”, put DS1 and DS2 onto a two-hour-long train ride, we spend four hours at the museum (during which many unexpected things happen), and he’s no trouble whatsoever.

I’ve even been on school trips with him, in reception, to provide adult volunteer support and he’s exactly the same as he is when I go on trips with him and DS2.

I’ve only had two meltdowns taking him on trips: one, he got overwhelmed by the kiddy noise in the Wonderlab in the Science Museum and bolted, so DS2 and I followed him, I cuddled him in the stairwell for ten minutes, and then we continued into the airplane section - which was quieter with fewer kids. And he also fled an arcade with fluorescent strobing blue lights and a low ceiling (again, I followed him outside, offered a cuddle, and then he chased pigeons for ten minutes. I also apologised because I should have known that space wasn’t pleasant for him).

I don’t understand how my experiences can be so different from the school. It’s the same places and he’s the same child…

OP posts:
Londonwriter · 13/02/2023 08:15

NB: The nappies are for DS2…

OP posts:
JustKeepBuilding · 13/02/2023 08:47

The school environment is a very different environment.

I think you have, at least partially, answered your own question in your penultimate paragraph . The difference is the sensory environment. There’s also the fact you can give DS1 a much higher ration of support targeted specifically to his needs.

I also bet you are naturally making adjustments to how you are, what you do, when you do things… Many parents do unconsciously and until pointed out they don’t realise. For example, the cuddle you gave DS, met a sensory need. Something that would provide similar feedback is a bodysok. You could also try a weighted blanket, weighted vest, weighted lap pad.

Unfortunately you need to be much more proactive with the school as parents who know the system and can advocate get better support for their DC.

Londonwriter · 13/02/2023 09:14

@JustKeepBuilding Thanks :) I think you’re probably right and that’s what’s been bothering me, subconsciously (hence the questions about home schooling).

DS1 is very similar to me to the point where we wonder if I’m autistic (or, at least, close to the diagnostic threshold). I seem to have an intuitive understanding of when DS1 will be uncomfortable, and what to do, because it seems ‘obvious’ to me. I have no idea what is obvious to other people - so, no idea how to help DS1.

Also, there are parts of the school that - having been inside - I find so hellish that I have no idea how you could make them better for DS1 without a major decorating job (e.g. luridly-painted walls, terrible acoustics), and they can’t do anything about that. He’s already been out of PE (which he enjoys) because he couldn’t stand the acoustics in the gym and wouldn’t wear the school ear protectors (he agreed to wear the ones I sent in from home).

I just feel that, he’s such a lovely little boy normally, he must be in psychological hell to be acting as they describe.

OP posts:
JustKeepBuilding · 13/02/2023 09:31

There are things the school could do to help with acoustics and visual presentation. Obviously for much of that they would require the funding, but they can apply for that/it can be part of an EHCP. An OT and the specialist teaching service should be able to advise what is necessary. A sensory OT assessment really would help - this can be part of the EHCNA.

If no school is suitable there is EOTAS, which means the LA retains responsibility, so I wouldn’t EHE. A good EOTAS package can provide so much more than EHE. That’s not a criticism of of anyone who EHE but more unless you are rich parents just don’t have the resources to provide what EOTAS can. For example, DS1 has a package worth well over £100k pa. There’s no way we could afford that.

Many parents are diagnosed following their DC being assessed. I was diagnosed following DD2 and DS3 being diagnosed.

Londonwriter · 14/02/2023 08:04

@JustKeepBuilding Thank you so much for this response/information - I appreciate it more than I can ever express 😍

I'd been absolutely terrified that DS1's current school would end up excluding him because nothing they put in place would help (this seems common in DME kids), and the only options on offer would be a PRU or a SS that wouldn't be able to meet his academic needs - so I'd end up EHE.

I realise I'd emotionally disengaged a bit from the school because I felt all I ever get is endless meetings telling me how terrible DS1's behaviour is, how he's displaying new terrible behaviours, and how they're introducing yet more consequences...

I was praying it got better as he got older because, although there's a DSP at an outstanding primary closer to our house than his current school, I don't think there's anything truly suitable for how DS1 (is currently) at secondary - even if we moved a long way for highly specialist provision (and not even then).

I now have some hope that, even if he can't stay in mainstream and there's no other suitable school provision, DH and I can put together a plan beneficial to the LA to EOTAS (which I didn't know was different from EHE). DS1 already 'self-home-educates' by finding (and watching) YouTube cartoon educational videos like AuSum Science and Dr Binocs, and asks me lots of questions about them, so I know he can - and does - enthusiastically learn 1-to-1 🙂

OP posts:
JustKeepBuilding · 14/02/2023 09:19

Following the meetings with school send an email summarising the discussion. This gives you a paper trail of evidence should you need it at a later date. Do the same with verbal conversations.

Don’t be too scared of exclusions. If the school do exclude it would provide you with evidence of unmet needs, you would be able to challenge it, and unless permanently excluding DS the school can only exclude for a limited number of days within the year.

Doesn’t mean they will be suitable for DS, but there are a few SS that could meet DS’s academic needs, some teach A levels.

EOTAS packages are completely bespoke depending on individual needs. For some EOTAS looks like EHE, for others it doesn’t. The biggest difference is the LA retain responsibility and fund it.

Londonwriter · 16/02/2023 07:35

@JustKeepBuilding Thanks :)

Really good advice - I'll send the school back a conversation summary on our last meeting before half term :)

I'm not entirely comfortable writing about DS1's abilities because I sound boastful, but we had a learning assessment with Potential Plus and DS1 is at the 99.9th percentile of intelligence. He's the sort of kid for whom his intelligence would be a SEN if he wasn't autistic, and he has the academic potential to do 5+ A-levels. So, he needs to be in a school where they're used to very bright kids.

OP posts:
JustKeepBuilding · 16/02/2023 08:54

Just so you know case law established exceptional academic ability is not a SEN.

Unless you look at a selective independent or super selective grammar even MS schools aren’t going to have a cohort of pupils with similar profiles. But good schools will work with you/professionals to meet DS’s needs.

SusiePevensie · 16/02/2023 10:31

This is a good start for gifted mathematicians: nrich.maths.org/public/topic.php?code=-376

New posts on this thread. Refresh page