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

[drspouse]

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?

My adult (23) son ASD, ADD, SPD etc (he has about 8 diagnoses) just could not cope with me and outside agencies pressurising him to attend school and learn skills to live independently. I just stopped.

It was hard (for me because I wanted to fix things) and it took a couple of years for his anxiety to reduce. On bad days I feel like I'm enabling but I'm really not - just letting him be who he is and not expecting him to be different. It's made a huge difference to our day to day lives and reduced conflict to a minimum. It also means that I am not living in denial and can plan realistically.

Sometimes you can't fix things but think the right external input can. Maybe they know they can't. It's only when you accept it can't be fixed by you or anyone else that you can move on and make things liveable. You can't make ND who are profoundly disabled NT.

@Attention we try very hard not to talk about school's failings in his hearing!

We said nothing to him in this instance and told school what he'd said and that in our opinion their constant (daily) sending him to the isolation/support/calm down area was now a reward for him. They just said they tell him to do his academic work in the support area (but we know he has no incentive to do so) and they can't do anything else (we made lots of suggestions based on what works at home but they "can't do" any of them.

For example, if you keep talking to him after you've told him to do something, he finds it very hard, we tell him and then stay quiet but his home-school book is full of "he was reminded several times to do X"; we find it is best for him to calm himself down with nobody else with him and definitely nobody talking to him but they say "oh he just follows his 1:1 when he's upset" - at home we then would go to another room or guide him to run around outside (they have masses of outside at school, way more than us, and his classroom has a nice foyer where he can be safe and even throw the beanbag chair if he needs to)

I don't think they believe us or, indeed, understand behaviour analysis (note I don't mean ABA, just working out causes and consequences, so ABCs as others have mentioned).

Here is an article on therapies in ADHD. Note that behavioural therapy for children (which is pretty much what we do, and we're getting much better at not giving negative attention for negative behaviour) and talk therapy for adults are noted to have research behind them but the other therapies for children are only "nice idea" and recommended by the therapists (well DOH).
We do actually use an ADHD coach (ADHD Dude who takes a very behavioural approach and it's working.

www.additudemag.com/add-adhd-therapy/

Sorry you are going through all of this, it sounds absolutely relentless.

I've no advice re social services or school, but wanted to offer some other suggestions...

Regarding avoiding his mood escalating, have you tried apps like Joon to help him with routine things? www.joonapp.io/

Regarding getting him to try new things, would he manage something like Cub Scouts? New things each week, but with the same people and same setting each week so it might be less anxiety-inducing. Plus regular rewards of earning badges.

And as a side note regarding keeping yourself calm, have you tried evening primrose oil or anything like that?

I think @Pocketsand point about not being able to fix things yourself and external agencies also not being able to do so is a valid one. I found this with my ds. Sometimes making things tolerable and making peace with what you cant change is what you have to aim for.

In case it's not clear @cansu tolerable is exactly what we are aiming for.
But "tolerable with no life skills and no qualifications and living in his room gaming 24/7" is not going to get us a child who can be independent at 18. "tolerable with some skills and some qualifications" is what he needs.

Because of his profile, if he isn't independent as an adult he's going to be in prison. Not in residential care. It might be different if you have a child with a learning disability or with autism of the kind that prevents independent living but just as they don't make schools for children with behaviour problems but no learning disability, so don't make adult residential care for them either. Except, as I say, prison.

You obviously know him but there are more able young people who live in supported living. Is this a possibility for him?

I don't think it either will or should be necessary. In fact it's bananas when you look at his capabilities now to even think such a thing. But I also suspect that, as with all these things, it's only available if you are well behaved. If not, then they will just do as school has done, wash their hands and send him home.

It would be ridiculous for him to be in supported accommodation because we were afraid to teach him how to cook and do his washing, so we just did it all for him, when he's actually already partially capable of doing these.

Likewise it would be ridiculous to say "don't bother advancing his academic education because he doesn't like it" when he's actually very keen on learning when it's presented in the right way.

To us, everyone else seems to have given up on him having a full life, but we refuse to do so.
And it also seems like everyone else wants to protect him entirely from everything that makes him anxious because they are completely unaware of the fact that lack of exposure to things that might make you anxious, just makes you more anxious.

We have spoken about residential care but unless it's a very good school (please don't tell me they are out there, I'm sure they are but they won't take him) we are fairly certain he would just come back to us bigger and more aggressive aged 18 with no more education and no better self regulation. Given the news around NW SEMH schools which are full of abusers (Wirral Life and Wings Cumbria) he would probably come back traumatised and abused.

(I can't remember if I mentioned that school said "well we can just say we can't meet need and the LEA will HAVE to find him a school". No, we said, if you do that he'll be at home with no education and his anxiety getting worse and worse and never going out, because the LEA have left lots of children in this situation when they stopped attending or the school said they can't meet need. I think the. school are living in cloud cuckoo land).

Sorry I should also say, because this is all gloom and doom - DS is slowly recovering from his epilepsy admission but the doctors were unsure how long this would take! He's still struggling with instructions but has been getting back to his creative self, he now has a craft book he seems to want to work through over the summer, DH, DD and he went to the beach yesterday to get some shells to make a turtle.

We went to an outdoor play on Sat and as usual with the first suggestion of anything he said I'M NOT GOING but we just waited for him in the car when we were ready to go and off we went.

He's got 1:1 swimming lessons this week so I'm waiting to see how those went.

I understand that finding the right school is very difficult. I would be careful of alienating the school though as there possibly isn't anything better out there as you seem to have discovered for yourself. I think if there is challenging behaviour it is much, much harder. My own ds was challenging and it has been a massive struggle. If they do say they can't meet need, you are absolutely right that you could end up with ds at home and out of education all together which I am guessing would be worse than ds in a school that is not getting the best out of him.

I don't know what we can do to avoid the school saying they can't meet need.
They just see his behaviour as so severe. We have made loads of suggestions and we agree to whatever they want to do in school eg art therapy. It isn't going to make him worse, we just have no confidence it will help.

We can't tell DS "don't kick off so you get to go to the calm down room and do your colouring". Well I mean we can but it would change nothing.
We could lie about him reading and doing other work at home but he'd tell them anyway.

(We did tell them they were incorrect that the LEA would "have to find" another school, which seemed to shock them. And we keep telling them how much he seems to like school -he told us yesterday he'd be taking in his crafts to show Sir).

But the school is not incorrect that the LEA would have to find him another school - that is correct. The LEA may not do that because they’re crap, but that’s a different matter.

And the school seem to be correct that they can’t meet his needs, I mean isn’t that what you’re also saying?

We are, but with the alternative of him staying there until we get another place, or being offrolled and left at home, we'd choose him staying there. They were threatening to remove him immediately assuming it would make the LEA take action - we know it wouldn't.
They do know the LEA are crap, and there are few schools available (which isn't entirely the LEA's fault) but it will help nobody if he is at home for a year.

In terms of assisted living by the way, as a general note and not regarding your son: I know of several young people who are in that situation because of their ‘behaviour’ due to their SEND and inability to emotionally regulate at times, and not because they can’t cook or clean for themselves. One of the young people I know of has 2:1 care workers 24 hours because they get violent.

In case it's not clear * tolerable is exactly what we are aiming for.
But "tolerable with no life skills and no qualifications and living in his room gaming 24/7" is not going to get us a child who can be independent at 18. "tolerable with some skills and some qualifications" is what he needs.

Because of his profile, if he isn't independent as an adult he's going to be in prison.*

It sounds incredibly difficult, and putting adoption in the mix makes it more so because unpicking what’s adoption, what’s developmental trauma, what is neurodiversity and what is behavioural can be very tricky. Depending on the particular world view of the professional involved you can find him being square pegged into a model that isn’t right for him - and there comes a point where the underlying cause almost doesn’t matter any more.

You said you’ve done a lot of research in this area - what have you found that is evidenced to help? Research in this area can be very incomplete, and even if a particular therapy has helped one child, or a cohort of children, it doesn’t mean it will work for your child in their particular struggles. In saying that I’ve had some success arguing for particular types of support for my DD13, by coming from as clear an evidence base as I could find.

Support for things like parent to child violence is particularly sparse, and yes I totally understand your fears about prison, there’s a dearth of therapeutic placements for children like ours and a teenage boy showing aggression is likely to be considered from a behavioural/justice perspective rather than a developmental one.

Ok, that’s not what you said above, there’s a difference between the LA having a legal obligation to do something as the school says (they have to), and the likelihood of them doing it. For all we know, the LA could act quickly and find somewhere although I agree it’s unlikely.

Are you sure a year at home wouldn’t work? Your husband and is retired and from what you’re saying you’re the only ones who know what he needs and how to get it. You say things have approved at home but not at school. Maybe home is the setting that would work best for him, if not you?

Thanks @Jellycatspyjamas - I am a scientist by training and look for meta-analyses, RCTs, and systematic reviews. You are right that most of the "this is good for adopted children" interventions have little evidence and that is partly why we steer clear of them (also, we don't think it is going to do DS much good if we are trying to get him to participate in something with an unknown therapist when he's basically not going to engage, though school are welcome to try if they think they can - unfortunately they tend to say "he won't engage with therapy" full stop and then don't try with things that we think he COULD do e.g. OT practice, which he quite likes).

Behavioural type interventions work well for ADHD
https://www.sciencedirect.com/science/article/pii/S0890856714004080

(note as I've said before this isn't ABA).

Here's an RCT on CBT for adults with ADHD (looking forward to him being an adult!)
https://link.springer.com/article/10.1007/s00406-016-0735-0

This is the anxiety programme we are using (this is for children with just anxiety, but the programme has also been successful in ARFID, and the clinic reports they use it with ASD and ADHD, though I don't think they have RCTs out yet. It looks like some children in this study had ADHD but they excluded ASD for this particular trial).

https://www.sciencedirect.com/science/article/pii/S089085671930173X

This is an interesting meta-analysis on family accommodation (making changes to make the child less anxious) increasing anxiety. It does point out most of the studies are cross-sectional (but some are not, and if you remove accommodation, you decrease anxiety).

https://link.springer.com/article/10.1007/s10578-020-00987-6

This is a systematic review of Theraplay for children: our DS is now older than this, but none of the studies included children with significant behaviour issues anyway, they were mainly social anxiety/internalising problems:

https://acamh.onlinelibrary.wiley.com/doi/full/10.1111/camh.12416

This shows that enhancing maternal sensitivity improves attachment in children with diagnosed difficulties with attachment (but DS doesn't meet the criteria for this).

https://europepmc.org/article/nbk/nbk305116

I know some people swear by DDP but there are no trials/systematic reviews on that that I can find.

Anyway lunchbreak over, must get on with some work as we have the Post Adoption Support person coming later!

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.
This would lead to escalation and I'm not at all sure DH wouldn't end up hospitalised.

DS would have no contact at all with other children or adults other than us.

DD would also get no time without DS.

And I'd spend a lot more time trying to WFH with DS needing attention.

As I say, he enjoys school. School doesn't enjoy him!

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.

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.

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.

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".

@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

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.