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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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drspouse · 29/07/2024 13:15

Attention · 29/07/2024 12:31

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?

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!

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drspouse · 29/07/2024 12:51

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!

A randomized controlled trial reporting functional outcomes of cognitive–behavioural therapy in medication-treated adults with ADHD and comorbid psychopathology - European Archives of Psychiatry and Clinical Neuroscience

Studies assessing psychological treatment of attention deficit hyperactivity disorder (ADHD) in adults are increasingly reported. However, functional outcomes are often neglected in favour of symptom outcomes. We investigated functional outcomes in 95...

https://link.springer.com/article/10.1007/s00406-016-0735-0

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Attention · 29/07/2024 12:31

drspouse · 29/07/2024 12:15

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.

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?

Jellycatspyjamas · 29/07/2024 12:16

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.

Attention · 29/07/2024 12:15

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.

drspouse · 29/07/2024 12:15

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.

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Attention · 29/07/2024 12:10

drspouse · 29/07/2024 11:39

(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?

drspouse · 29/07/2024 11:39

(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).

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drspouse · 29/07/2024 11:37

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.

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cansu · 29/07/2024 11:22

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.

drspouse · 29/07/2024 10:44

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.

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drspouse · 29/07/2024 09:53

(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).

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drspouse · 29/07/2024 09:50

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.

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cansu · 28/07/2024 21:37

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

drspouse · 28/07/2024 21:13

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.

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cansu · 28/07/2024 18:56

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.

ChiffandBipper · 27/07/2024 23:42

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?

drspouse · 27/07/2024 22:35

@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/

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PocketSand · 27/07/2024 15:50

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 · 27/07/2024 14:23

@drspouse I absolutely do forgive you for being sceptical about it working for your child.

What isn’t right though is you taking the specific and presenting it as a general rule. That’s not your place to do that. People could read that and believe you when talking therapy can be helpful for children with ADHD.

As has been said several times on this thread, your son has a complicated profile that includes ADHD, anxiety, epilepsy and being adopted. What works for children who ‘only’ have ADHD isn’t necessarily going to work for him. He’s not simply ‘a child with ADHD’.

Progress has many forms. I personally don’t see doing chores as one but see that you constantly mention that and what you’ve made him do. It’s not something I’ve focused on with my teens who have AuHD and ADHD respectively choosing to prioritise other battles (emotional regulation, school engagement and homework). My eldest is going off to university soon and has been doing their own washing every week for years at their own instigation, cooks and bakes, and has had a part-time job on and off for years. The independence came. They both help out with chores but do so mostly pro-actively. I’d have loved them to help out more but everyone’s energy was better suited going elsewhere. I appreciate that just my experience.

In all honesty though, if that’s what my son was saying when he came home from school, then I would be changing my approach and using bribery or rewards or even discipline to get my child to engage at school. I’d be teaming up with the school to provide a united front. Hopefully he doesn’t pick up on your disrespect for the school. I know it’s not great but it’s what you have. What do you say to him when he says that he kicked off to get what he wanted?

drspouse · 27/07/2024 10:20

Given that about 5 other agencies have tried talking therapies with him and he mainly hides, you'll forgive me for being sceptical. Same with eg art therapy at school. He spent 2 weeks hiding, 4 weeks colouring and it made no difference to his behaviour (which was why they wanted to do it).

And yes, being independent and having the resilience to do things he doesn't particularly want to (whether that's homework, helping around the house, or being in groups with other children/being away from us) IS progress. Becoming less anxious about doing new things IS progress. I'm not sure what you think progress is?

Given he's literally come home from school and said "I will kick off so I can go to the calm down room and do my colouring" I think they might need a different approach, don't you?

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Attention · 27/07/2024 04:21

I'm really sorry to hear @drspouse that your son has been ill and was in hospital. Also sorry to hear that the school isn't being helpful.

I said before and I said it again, it's not true that talking therapy isn't recommended for kids with ADHD. Please stop saying that.

And frankly, it's good that "they bothered", it's good that services are trying to help, even if it isn't the help that you want. You seem to measure progress in your child doing chores while expecting all the outside services to bend over backwards and not expect any 'compliance' from him.

Geneticsbunny · 25/07/2024 23:50

That must have been really scary. I am fully in the trenches for summer holidays. We have had 1 full day of screaming but it seems to be slowly claiming down. Almost at the end of the 1st week. Only 5 weeks to go.

drspouse · 25/07/2024 15:35

More updates:
DS has been pretty ill (epilepsy, hospital, I was away with work but by the time I looked into changing my flight he was home again, my mum who can be really controlling was an angel and looked after DD but DH was glad to see her go). He's still quite groggy and clearly having his brain shut down almost entirely for half a week followed by the rescue meds (IV) not leaving his system for half a week has left him with problems following instructions, remembering things he definitely knows, and a few "stuck record" situations.

So we are obviously taking it gently and this week working on a few easy things like trying on t-shirts that may be too small and helping to clear the table before tea.

He was supposed to have a last trial session with a youth worker but surprise surprise didn't engage (we said he wouldn't) but honestly, since talking therapy is not recommended for children with ADHD we are not sure why they bothered.

School however have been a PITA. Had our ECHP review and they basically said they'll lie to get rid of him. We have told them ALL the things that are helping us at home and pointed out a few things he has said to us which suggest they might not be getting things right and they basically have refused to try anything different. Given it's a specialist school and he has a 1:1 and these are all things that work at home I'm not quite sure what else we are supposed to do.

One of the regional SEMH schools has been shut down (not the Wirral one, another one) due to abuse. It's a very scary time.

On a positive note we have 1:1 swimming for him which he really enjoyed at half term so we're hoping his brain kicks into gear for that, it's next week.

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Crumpetsssss · 20/06/2024 07:45

Thank you for these last few links. I didn’t realise there was a link between stimulants and tics, or that non-stimulants were recommended for children with anxiety. I’ll ask about this at our next appointment.

<solidarity OP>