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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

To think if we can't get help, who can?

244 replies

drspouse · 22/04/2024 20:38

DS (12) has ADHD and can be aggressive. We are seeing positive changes but he can still flip on the drop of a hat and last week threw something at me that made my head bleed, DH took him out to cool off, I had called the police and they had arrived meantime and this triggers social services to call which is why we do it.
Had a really patronising, I felt, call from social services today. They keep saying we've "refused services", throwing names around (names of people we may have met but we've met about 20 new people and some have actually rung DH or seen him not me, and names of services that we may or may not have been told about).

We have recently been awarded respite which is supposed to be a certain number of hours but none of the agencies can find us any workers and the SW acted surprised (despite there being a national care recruitment crisis). I contacted a mentoring agency - they charge £75/HR and we get minimum wage to pay the worker...

Both DH and I thought we were told we'd be getting a disability social worker. Apparently we should know he has the wrong sort of disability so no social worker.

We are fully aware that we don't always handle him well and the incident last week has also left me with bruises but it was the result of me telling him off for ignoring my instructions and he then pushed me against the metal radiator so I fell over and then he threw cutlery at me. I completely lost my cool as I was covered in blood and I wish I didn't because it just makes DS more wound up and more aggressive.

We've asked for help around staying calm and our mental health (because we are on edge wondering which day he will throw a kitchen knife or push someone down the stairs, and because we don't know how not to react when we are bleeding or bruised). We also want someone to help us with how we handle him and what to do when he's dysregulated. We were explicitly asked "what do you think you need" only to be told "we don't provide that" and then apparently we'd "refused services".

We've been told about 20 times to "call your GP". We've both been through their CBT course twice, me three times, and we're both on medication.

We are at risk of being seriously hurt. We are afraid for our lives and safety. But nobody can do anything about it. What are we supposed to do - wait till one of us is dead? Until he's in prison? Until he's old enough for us to say he has to move out and then he'll just be on the streets and on drugs but we might still be alive?

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FatsiaJaponicaInTheGarden · 06/12/2024 07:16

I've just read all through your thread and it sounds so difficult. How are you/him doing now? (I've got no advice just support from the sidelines really - adhd/autistic kids so some understanding but we aren't facing anything as near complex or difficult. My heart goes out to you.)

Glimber · 20/09/2024 22:47

"he needs competition in the basics - being first to say the answer, praise for coming up with a good description, that kind of thing. You have to make him forget it's hard work and think it's a game"

I do understand this but won't this either have been plan A at school and it's already failed, or if it wasn't Plan A there was a really good reason why not, eg his peers are not able to cope/do not thrive with this approach. In either case perhaps school are not going to be able to meet need.

I wonder if it might be possible to introduce this game element with a one to one teacher. I compete with my teen all the time, and adults can regulate their responses better than SEMH needs peers. If DS is motivated by being the "winner" among peers then that implies someone has to be the "loser" - and that he must take his fair turn at losing himself. Neither of which sounds very realistic or stable to me in a group of presumably quite reactive and high needs kids. I just wonder if a tutor could work and be more realistic than trying to get a whole peer group set up perfect for him. A tutor with the right classroom experience, who's understood and digested your most recent insights and can "buffer" the winning/losing, mop up enough of the losses while still maintaining their position, and gameify the learning.

My son's got a different profile but he has massively struggled to engage. A.N.Other tutor has not worked out but the right tutor should be able to provide the "Goldilocks lesson" - not too challenging, not too easy, just right to press DS's engagement buttons. You can't keep moving him from peer group to peer group until one fits, and school probably have no other groups he could slot into anyway, but you can try different tutors and they vary massively in skillset and how much they'd click with your son.

I know you want/need him to be in school and therefore you want/need school to provide the learning in the peer group. But it's a long game. We've divided it up. Engagement with amazing tutor first, and he's gone from outright school refusal to asking to see mainstream classrooms. Would it be worth maybe seeing if they could teach him one to one at school for a few weeks in one subject? Please don't bite my head off if you've covered this. I have read the thread but I can't claim to retain every single sentence you've written.

drspouse · 20/09/2024 20:56

There's a secondary PRU but we've been advised it's a lot more triggering for a lot of children. We looked into the medical AP but were told it's for children who don't have an EHCP and are medically incapable of attending their mainstream school. There are no other AP options.

We don't feel it's the actual environment that upsets him - he's generally good with the other children, always to be seen on the field at break - the only occasions he's been aggressive to another child is where that child has bullied him first. I'm not really sure what learning would look like in a non school setting but if an adult is trying to persuade him to learn that's the kiss of death whereas if something is happening around him and there's a chance to put his hand up and look clever he's all over it. So a tutor or similar at home would work less well than school does if that's possible!

If he was the kind of child who did the hard work of practicing writing/complex reading/maths on his own and needed inspiration in a group setting then something like riding/sports/art group/museum visits might work but he needs competition in the basics - being first to say the answer, praise for coming up with a good description, that kind of thing. You have to make him forget it's hard work and think it's a game, but he needs lots of practice in some of the things other children don't need.

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Attention · 20/09/2024 18:26

Some of those things you list do sound like things the school should be able to do.

But a few of those things sound unrealistic.

I think you need to bear in mind though that children, even those without SEND, can behave very differently in different settings. Your son had a series of enforced school moves so at this stage, a school setting is likely to automatically be a bit triggering for him.

Is there an option for the school to do a managed move to a PRU, or some other form of alternative provision? I appreciate that might be temporary but it might be better than nothing. Although he’d be at a secondary PRU when the one he was presumably at before was a primary one, so a PRU might not work as well for him now as it did before.

drspouse · 20/09/2024 15:42

Forgot to reply to the self defense: it's on the list, but things have calmed down a lot at home and our home priority now is teaching DD to ignore him. But he's getting better with her too, for example he used to do everything he could to get to her in the morning to pull her hair or push her because she reacted so well. We had to stick to each of them separately to keep them apart.

This morning he said "oh there's DD I'll pinch her" but wasn't anywhere near her. She growled at him (which is her go to reaction) but he said "only joking, do you want cornflakes?" Which to my mind is a perfectly normal sibling interaction and is a huge step forward.
We also need to teach my mum how to ignore him, she's like one of those reactive yappy dogs when he puts a foot wrong!

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drspouse · 20/09/2024 15:36

What we think school should be doing is more or less what happened at the PRU where he was very successful.
Ignore everything they can.
Tell him once and don't keep on telling him.
Give him rewards that work (mainly screen time, but they need to be in control).
Sit with him but don't talk to him when he isn't doing what he's supposed to be doing.
Don't try and ask him to tell you why he's upset.
No rewards till he's done what he is supposed to be doing.
If he's nervous or refusing to do something I sit and read a book or tidy up and don't talk. That would be extremely easy for his 1:1 to do and we've explained how we work it but they won't have any of it.
We let him get bored with nothing much to do until he does what he's supposed to be doing.
Some of the things that are theoretically "low demand" work with him - not going on at him, not appearing to care if he does something, giving him choices (but if he doesn't choose we choose for him).
Removing the actual demands just means his world gets smaller and the things that set him off become less and less easy to control. This is not speculation, it's what actually happens.
Adding them slowly but without appearing like we care has made him able to do more things.
We know he's not able to cope with a large class but we also know he is able to cope with a small group most of the time.
School seems to do the opposite: they talk too much, keep trying to persuade him, and talk when he's dysregulated.

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Octavia64 · 20/09/2024 05:48

Not sure I have advice but I will add my experience:

This does happen.

Students who show violent behaviour need to be risk assessed. Schools have a duty of care to their staff under the health and safety at work act and in order to stick to that they do risk assessments.

https://www.nasuwt.org.uk/advice/health-safety/risk-assessment-of-violent-and-abusive-behaviour.html

The current Dfe guidance on behaviour emphasises that keeping students and staff safe is a high priority and that child to child abuse is a major problem.

https://assets.publishing.service.gov.uk/media/65ce3721e1bdec001a3221fe/Behaviourinnschools--adviceforrheadteachersanddschoolstafffFeb2024.pdf

In most schools now if a student is being violent then they will be left in the classroom and the rest of the class will be evacuated. Obviously the teacher will try re-escalation strategies first.

In some schools student violence is a major problem and on occasion the unions have got involved after staff have been injured and the whole staff body have refused to teach the child.

I have personal experience that if a child has been supported and triggers identified etc, and has been through the process of support being offered but it makes no difference then they can end up just in a room pretty much on their own with a TA for support.

One of the children in question was routinely violent to multiple mainstream school staff. He had multiple diagnoses. He tried out a unit in another school but was violent there as well. He wound up back with us because no-one would take him. But his triggers were demand focused - he was basically demand avoidant - so classrooms would never work for him.

They did try to get him to learn things but ultimately it came down to the physical safety of other students and staff is more important.

Staff in special schools and PRUs are generally better at dealing with violence as they get so much of it, but even they have limits and the academic curriculum there is generally not as good as mainstream

Makingchocolatecake · 19/09/2024 23:10

Octavia64 · 23/04/2024 02:52

It sounds like you have looked into what works for him in detail and you mostly know what you are doing.

Things that might help you deal with violence:

Sounds stupid but take up a martial arts class. They will teach you control and options.

Consider doing positive handling training - this is the training used in schools for children who are violent

www.positivehandling.co.uk

The SS team may be able to help you access this - it's mostly aimed at schools.

De-escalation strategies are worth looking into as well.

I was going to suggest this too. I work with similar children to your child.

Attention · 19/09/2024 20:21

Basically I agree completely with @cansu

Attention · 19/09/2024 20:19

Glad things have improved at home!

Re school: they’re right though, they can’t meet his needs. Part of those needs are academic, so you agree. The school can’t teach him as doesn’t engage and gets aggressive.

In terms of the school “rewarding aggression”, what do you think they could do instead?

They’re putting him in a different room to separate him from children he could hurt or property he could damage. They could traumatise him by putting him in complete isolation or something he hated and you’d have every right to complain about that.

cansu · 19/09/2024 19:38

It is obviously brilliant that things have improved so much for you at home and you may well be right that the line you took worked. Surely though you can see that the environment, peers and needs of other staff and pupils make the position at school very different? I can't see how a judicial review or any other legal action will be able to force his school to act in the way you think they should.

drspouse · 19/09/2024 19:31

He has improved massively over the last few months, to the point where we have issues weekly or less whereas school seem to report issues daily.
Obviously we'd love him to be calm all the time but it's taken about a year from tearing our hair out to being proud of him for trying a new club yesterday with no fuss at all.
We have called the police, yes, but in some cases because we were told to report absolutely everything to get the help that was offered (though it hasn't been much).

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cansu · 19/09/2024 18:21

OK. I think though that you are being unrealistic. I also remember you having to call for help when he has been aggressive on numerous occasions. You also do not have other children with similar needs to consider. I also think we are prepared to cope with things from our own kids at home that we cannot expect school staff to cope with. Ignoring aggression is your choice. Why should school staff do this? What happens if they do and someone is seriously hurt?

drspouse · 19/09/2024 18:15

You are right, we don't know it's true.
But he thinks it's true, which is the important part.
We know they've said they can't teach him, as well.

At home, we have increased demands, ignored aggression, he's calmed more, tries harder, and helps around the house.

At school, they reward aggression, and refuse to listen to our ideas about incentives, and do everything for him. He doesn't do any learning and thinks he doesn't have to.

Hmm let me see, which one's working?

I've already answered the rest of what you've said.

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cansu · 19/09/2024 17:47
  1. How do you know that what he has told you is true?
  2. Let's say it is true. If he is aggressive when asked to do something then the staff have no choice but to reduce demands and provide an alternative. Staff won't accept getting hurt in order to show your ds that this behaviour won't work.
  3. If they had an incentive that worked they would be using it.

It all kind of adds up to the school not being suited to your ds needs which is what the school have said.

There may not be anything better out there. I know you have said this yourself on other threads and I think you may have already tried to get other independent specialists and non specialists to take him.

You could try home education with tutors or eotas with tutors but you will likely have the same issues and again wont easily find people who are prepared to stand their ground with someone being aggressive. Students who are challenging with their behaviour often end up doing much less academic work while schools work on meeting their emotional and behavioural needs. My dd is accessing an alternative bespoke education service where tutors work individually with students. However it would again be trying to meet your ds emotional needs and working on his interests so not a traditional exam focused learning approach.

drspouse · 19/09/2024 14:51

I'm going to make a really rude update here which is to say I'm going to ignore anyone who tries to make an additional diagnosis for DS, or who has obviously not read any of the previous posts or has obviously only read the OP.
Sorry. But not really.

Anyway an update:

DS is doing incredibly well at home and (if you read my other thread) is on much better epilepsy meds. We've hardly had any aggression and one incident was provoked by my DM full on shouting at him which frankly I don't blame him (she massively favours DD who can do no wrong even when she slapped me for moving her plate till she picked up her fork and stopped using her fingers.) He was quite confused over the summer and even got lost a couple of times but is more or less back to normal (for him).

However before the summer the schools said they were about to tell the LEA they couldn't meet need and the LEA would "have to find him another place" which shows they live in cloud cuckoo land.

He is back in school, has been in for most of 3 weeks except for 2 days after he was basically travel sick and vomited in school.
During that time he has done no academic work, hasn't been in the classroom, and has told us "they have said I don't have to do any work".
It is hard to tell if they have been ineffectually saying "oh DS do you want to come in the classroom now" and he refuses and they write down "not ready to learn" or if they have actively decided not to bother teaching him until we take him away.
He needs incentives to do anything hard. Obviously he does. He has no incentives to do anything even remotely challenging at school and he has every incentive to hurt staff (because when he does he goes off to a nice quiet room and gets to do colouring).
I called his case officer yesterday and emailed them again today, but if I don't hear back I will be talking to the head of her team.
I think my next step will be judicial review but it doesn't actually say "we will teach your child basic National Curriculum subjects" on his EHCP so I feel like a complaint that they aren't doing this might not go anywhere.

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drspouse · 31/07/2024 14:34

I'm finding your post a bit hard to read @ilovemoney but it sounds like you think we are trying to do exactly the same as with a birth/neurotypical child?
I am guessing you haven't read any of my posts.

I'm not going to link you to all the studies on how you tell if a child has an attachment disorder as I'm sure you can Google for yourself.

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ilovemoney · 31/07/2024 14:05

I'm not sure why he would have CPTSD because, while not wishing to minimise the difficulty that being adopted caused he has no neglect, trauma or disrupted attachment.

One of My DD had in utero stress from birth mums lack of food, drug taking, alcohol and stress from her chaotic lifestyle, removal at birth would have been traumatic and a broken attachment, moving to foster care, being adopted in itself a traumatic attachment disruption. He is showing you he is very traumatised. Your denial of this is surprising.

School tried art therapy, he just draws the same cartoons he draws the rest of the time, he likes animals but walking around once a week with horses is not going to turn him into a calm child! Maybe it would be good for a calm anxious child but that isn't him. He will not talk to therapists.

That sounds like art therapy was going very well, that repetition was great and a good sign he was working through stuff in a rythmic way. Horses are highly attuned sensitive prey animals who communicate at a sophisticated level non verbally so perfect for children with trauma as they have a larger amygdala. Horse operate a lot from the amygdala and can be really in tune socially as they are herd animals. If you can communicate with ahorse that is a skill and hugely confidence building.

I can't find any controlled or systematic research showing any of the therapies that the ASF funds actually work, except CBT which is not suitable for a child that won't engage. DH was just recommended Therapeutic Parenting so I looked up controlled trials and systematic reviews like I always do and it doesn't work better than doing nothing. Why does the ASF waste money like this, honestly? There's so little to help and they are throwing money away.

A lot of parents have had huge success with therapeutic parenting and low demand parenting. Just because someone hasn't done a study it doesn't mean it doesn't work in practice. Children with damaged brains and nervous system and complex trauma cannot be parented in exactly the same way as NT children surely.

Attention · 29/07/2024 16:13

Just to add - I've had panic attacks myself, so I sympathise with your DH, and when I have both of mine have been upset and concerned. My teenager with AuDHD couldn't cope with it, but 'hilarious' was the opposite of how she found it. I appreciate that's only two children, but I really want to keep reiterating, as I have since I joined this thread many pages ago trying to help, that your son's issues are NOT just, or even mainly, due to ADHD.

Attention · 29/07/2024 15:59

I'm absolutely certain a year at home would be awful for everyone.
DH would get no respite and his mental health is on a knife edge. He's had panic attacks before and DS finds them hilarious and an excellent outcome to his behaviour.

Yes in that case @drspouse him being at home obviously won't work. It was a last resort suggestion anyway as he has had to leave several schools already, and this one is wanting to move him on, and you are confident that what you're doing is working for him and have said before you've taught him more than the school has. But parental mental health is key and you need your own boundaries and space.

It is troubling that your son finds your DH's panic attacks "hilarious". As I said before, I have ADHD and I have two children with ADHD, one of whom also has ASD, was thought at one time of having ODD, and has been violent. I advise families and school involving children with ADHD, mostly from a legal viewpoint and involving EHCPs. This particular behaviour is not a typical or even an atypical ADHD trait.

People with ADHD, including me, may laugh at serious things inappropriately as an impulsive reaction out of anxiety or not knowing how to react. This however sounds different: a lack of empathy, dissociation and extreme need for control.
It's indicative of something else other than (or at least in addition to) ADHD. There's one child I know of, also 12, who behaves similar, but he has suspected ADHD, suspected Autism (waiting for an assessment) and a family background of extreme trauma and essentially permanent rejection from one parent.

Even though using the strategy of ignoring negative behaviour - that can work with children with ADHD - may work here, it won't address the underlying fundamental issue. If it was me, I would be doing what I can to seek help to look at that, regardless of the research. And I would absolutely be starting from centring things around him being adopted rather than him having ADHD, especially since you and the professionals have ruled out autism.

aerkfjherf · 29/07/2024 15:23

@drspouse I am so sorry you are going though all this, but I really think your thread should be required reading for all teachers, social workers, therapists, medica, anyone and everyone working with difficult children, because you are so articulate, and so clearheaded, and describe the actual reality so clearly.

Sorry, I know it doesn't help you, but thank you for the thread, anyway

drspouse · 29/07/2024 15:14

He does have all that sensory stuff at school (and loads of chances to wrap himself in a blanket, use the swing and the climbing wall we have in the play room etc. etc. at home, as well as going climbing, swimming etc.).
We do try to minimise screen time but of course get loads of pushback on that from him (and no we don't think it "regulates him").
But honestly, if you have an idea about how to get him to talk about how he feels either physically or emotionally - bring it on - there's zero chance he'll tell us how he felt or "express it using clay". Or dance in front of anyone. Or describe anything with music. All the therapists think their answer (art, equine, outdoors, sensory diet, etc. etc.) is THE BUSINESS and without fail, he fails to do what they think will be good for him because it's someone directing him to do something and he doesn't see why he should (i.e. doing it - with a scary person he doesn't know who's asking him to do scary things - is worse than the alternative, which is usually just being left alone, or hurting someone).

But I honestly don't know what we would be expected to do differently that we haven't tried and that has a snowball's chance in hell of getting off the ground or ANY background of working in a child with aggression if we said "OK it's all adoption and trauma" versus "he struggles with his behaviour so we need to look at why and what he gets out of it".

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Jellycatspyjamas · 29/07/2024 14:43

I totally understand where you’re coming from in terms of attachment but depending on how birth mum was in pregnancy he may be carrying a load from there. There’s evidence that points to pre-birth trauma impacting things like self regulation, interoception and proprioception which is why sensory and somatic activities/therapies are often recommended for children with developmental trauma. I wouldn’t dismiss adoption playing a part with him.

The limits with all the therapies you’re looking at is that they are all coming from a cognitive place, which makes sense given your focus on therapies that can be the subject of clinical/RCT type trials. Where trauma is pre-birth/pre-verbal you’re dealing with responses in him that are driven subconsciously by instinct which he is now wrapping a narrative round that points to him knowing exactly what he’s doing and which then points to a behavioural response.

In your shoes I’d be looking at therapies and activities that are more physical than cognitive, that help him make sense of what’s happening internally in a physical sense rather than necessarily focusing on his behaviour or external prompts.

For example using the ABC framework mentioned previously I’d be looking at how he physically felt before an incident - using as many ways to help him describe that eg clay, drawing, music, movement etc rather than using a cognitive description. Following that up with behaviour (eg what was happening physically when he was doing X, was that different to how he felt immediately before) and again looking at consequences eg how did he physically feel afterwards. Given his age it’s going to be harder to help him link his physical sensations to emotions to behaviour but it’s part of him integrating responses he’s developed since infancy.

I know the science part of you wants gold standard evidence of everything - but as you’re finding, a good RCT doesn’t mean a particular therapy will work with X child because people don’t work that way. I tend to steer clear of things that sound truly hokey but have seen huge benefits on working with intereoception and prioperception with my daughter particularly. It became clear she just didn’t have the same internal physical cues as other people to help her know she was becoming overwhelmed or tired or anxious until she was well beyond being able to regulate and then she would explode. We ended up building almost compulsory sensory breaks at school and home whether she felt she needed it or not. Things like dancing, singing, swimming also helped - screen time was the worst thing because it numbed her to internal sensations and cues which would then overwhelm her when she came off her screen resulting in a tsunami of sensation that she couldn’t handle.

drspouse · 29/07/2024 14:02

I also think that what’s considered therapeutic parenting isn’t great for children with a high drive for control or reaction but saying that in adoption circles is like blasphemy.
This is EXACTLY our feeling and our findings. DH went on a Connective Parenting through NVR course and he laughs about the suggestion that you should sit down with your exploding child and ask them how they feel. OTOH, I was astonished when he told me that many of the parents on the course had given up trying to connect with their child - we do lots of "connection" things, just not when he's exploding!

How does he understand his adoption and what do you know of his pre-birth experience?
He knows his birth mum couldn't care for him (or previous/subsequent children). We've drip fed a lot of the other information, but he isn't all that interested in listening, but we keep at it. We have a good deal of information about his pre-birth experience from social workers and birth mum. He's relatively interested in who's in his birth family so we go over that, at least.

You seem very clear that all his difficulties relate to ADHD and not his adoption history - is there a reason for that?
Partly due to the young age he was placed with us - there is absolutely nothing in the attachment research that would indicate he had any risk of disrupted attachment, and he is objectively securely attached. But also because although it's fairly likely his pre-birth experiences also contributed, the same strategies - calmness, consistency, gradual exposure to things that make him anxious, and no rewards (including attention of any kind, positive or negative) for aggressive behaviour, would work in a child who JUST had pre-birth adverse experiences.

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Jellycatspyjamas · 29/07/2024 13:41

The difficulty is that most relational therapies don’t lend themselves to RCTs because it’s impossible to standardise the therapy enough to make comparison or a control group effective. It’s one of the reasons CBT/DBT are favoured by the NHS. They’re not necessarily more effective, but they can be manualised and standardised. DDP has been excellent for my DD but she has known attachment difficulties and isn’t aggressive/no behavioural issues in the way you describe. I wouldn’t suggest it in the absence of attachment issues.

You seem very clear that all his difficulties relate to ADHD and not his adoption history - is there a reason for that?

In terms of CAMHS, I managed to argue my DD into their service on the basis of her trauma history (also adopted) and evidence of the benefits of early intervention which also happens to be part of the wider policy environment where I live. I have expertise in developmental trauma so could argue from a credible place though I did feel like I had effectively resat my Masters to get there.

CBT can work wonders with ADHD in children, but I think purely trying to address him from an ADHD framework is leaving out a big part of the picture. He may not have attachment difficulties but adoption comes with so much more than attachment stuff, some of which can present in a similar way to ASD which may be why so many people are pointing to ASD when your son doesn’t meet the screening criteria.

How does he understand his adoption and what do you know of his pre-birth experience?

I know it can be very difficult to remain calm when you’ve been physically hurt or are living in fear of being physically hurt. And I’d certainly have a reaction to being told I’m effectively his servant - you’re constantly fighting your own fight or flight response which is totally counterintuitive and keeps your own system out of kilter.

I don’t think it’s helpful to change everything to suit the “needs” of a child, it gives them far too much power that they can’t process and leads to ever spiralling behaviours because the child knows you’re scared of them. I also think that what’s considered therapeutic parenting isn’t great for children with a high drive for control or reaction but saying that in adoption circles is like blasphemy.

Having him home for a year, or homeschooling would be disastrous for you all. You all need some respite and it sounds like he needs the structure and routine of school even if he finds it tricky or tends to play them at their own game.