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?

I just wanted you to know that there are other people going through it too and that it is actually definitely bloody hard.

I just wanted to say thank you for starting this thread OP. I’ve followed a lot of the links here and will explore them for DS and myself when I have a little more energy. Sending you a hug / fist bump / large G&T and a huge heap of solidarity.

Fellow autism and heading towards an adhd diagnosis mum here with a similar aged son.

A lot of what you've said resonates with me, in particular about the violence and demand avoidance parts. At every stage I've been told I need parenting courses by the professionals, and I've done every single one. They've reinforced the things I'm already doing if nothing else. The lack of services available, especially for young people who are at the mid age, not young children, but not quite teenage/adult age, is frustrating, and if he's able and bright he'll fall through the cracks even more.

The turning point for me hasn't been any one thing. I've had to change my mindset a lot, change how I see things, reframe demands, and ultimately make him feel that he's understood and not alone, that's been the most difficult part because words just don't cut it!

The judgement from others is hard, you need to discipline in a different way, teach in a different way, and it doesn't always satisfy the onlookers! You do develop a thick skin but it's a lonely place as a parent.

Feel free to contact me if you want to chat, it's such a difficult thing to manage and to manage your own feelings being at the brunt daily.

I completely understand - we are in a similar situation though it's got better (though she had a massive meltdown this week).

Have you a post adoption social worker and access to the adoption support fund?

Meds help but it's a long process. I think we are nearly there with a combined dose. We did a course called the Great Behaviour Breakdown when things were really bad and it was incredibly helpful. I really recommend it as it's for parents if adopted children and deals with trauma and ND and how to manage behaviour and also your own regulation. I'll PM the details.

Big hugs, you are not alone xx

@Fluffytoebeanz as above we were under PAS but we couldn't do the therapy they offered and they refused further support.

Paeds appointment to sort out epilepsy meds. Consultant (who is the best paeds in the world, I will accept no substitute) has given us a new medication to try and said he's on the highest ADHD dose but to try a different timing.
Early Help, or [insert other name here] have agreed that we didn't refuse anything owing to having been offered nothing. So they are going to see us all separately and see what else they can do. The worker who came is VERY no nonsense and I don't think is going to tell us "just try and be calm". Apparently they do offer emotional support for parents and she has no idea why they said they don't.
The other thing I need to talk to DH about is that both the children go on and on about me being bossy and "I'm not going to listen" and everyone but me thinks this is hilarious but while this would be funny if I had children who sulked when I told them to do their homework but not so much when "Mummy's too bossy" is an excuse to hit her.

Sounds promising. Sounds like the paeds consultant is a good advocate for you. Use them as your back up if it feels like you aren't getting anywhere with other services.

I dint think you're being rude when you discount things that have no evidence base or that you've already tried....
Mumsnet is an internet forum and you don't the motives, beliefs or background of anyone posting so you're right to hold some scepticism.
Without outing myself my recommendation for NVR training and exploring DDP definitely come from an evidence based approach. I'm not sure in your case if be advocating theraplay and if definitely want a DDP therapist that was a psychologist by profession. In some areas there are private psychology services that will come in to your home/school setting and do an overall assessment/ individualised formulation that tries to understand maintaining patterns and make an individual plan that you can all follow. It's this an option?
The ask on you both is immense it's super hard, like asking you to be A* parent/pseudo expert/therapist all in one. Tag teaming, respite, cutting other loads, taking individual breaks, using friends family to cheerlead/cheer you up/support groups etc etc all help. But it's still all hard.
Sounds like your paediatric consultant is a good one. This age is quite tricky for adjusting ADHD medications due to growth so needs regular review. Can they lobby for the right non medical support? Has anyone done a sensory profile assessment? You might want to ask your paed what else might be going on (sensory issues, ASD traits?)
I know your son was removed at birth and it's really annoying to have professionals bleating on about trauma and attachment, but it really is likely to be part of it (if not the whole story clearly). He can't unknow or unfeel that part of his story. Your consistent predictable and reliable approach in how you respond (Dan Hughes calls this CPR approach crucial) will help. Big hugs to you in your journey and hoping it gets a little easier soon.

So we now have a Family Support Worker (next step down from a social worker? I think?) but on the other hand, DS has been excluded from school.
This is not helpful, in fact it is counterproductive, because now he knows if he is aggressive enough he will not have to go to school. He has been struggling this term and some of it is due to his epilepsy meds being changed (so he gets confused - we've seen stereotyped behaviours that we never used to see, and he's been combative after a fit.
So basically they have excluded him for a week on a medical issue. They told us we could keep him off voluntarily and we declined (partly as we have a funeral on Monday but the DCs were supposed to be at school, and DH was supposed to be going to an adoptive dads' support group). So they have excluded him. We are also supposed to be going on an adults only tour of a new school on Tues. So we can't get support because school not only say "we can't do anything with him, please tell us what to do" but also say "we can't do anything with him, we know you can't either and he's injured you badly enough to go to A&E but you can have him at home and then he'll learn how not to go to school".
Can I scream now?

Sigh.
School have, we think, worked out that they shouldn't have excluded him for medical reasons, and the epilepsy nurse agrees, and school have now decided to send round two (seems excessive!) teachers and we must be there with him (I can understand that part, but a wider audience will be more opportunity to play one off against the other, play the clown, and think up new disruptive behaviours to wind up 3 adults who will (in the case of the school staff) calmly and at length explain why it isn't acceptable (he knows it isn't acceptable, he does it to avoid school work).

I saw a new school today (DH couldn't come because of course DS was at home, though he also wasn't that well first thing). It has a lot of things that would appeal to DS (mainly animals!) and a lot of things he should be engaging with at school but isn't (e.g. his current school has a science lab, DS has never set foot in it and no child has ever done a Science GCSE), but they are primarily ASD/social communication and he doesn't have the ASD diagnosis, which is why he's in an SEMH school, and why nobody seems to want to take him.

I'm not sure if anyone is reading this but update and lengthy rant.

We have had a good few weeks and DH has been sent on a Connective Parenting Course (he went on one before and says it's all the same thing, except the social workers are offering play therapy to 15 year olds, but you know, it's not us they are offering it to!). DS nearly managed a haircut at the weekend (he let the hairdresser brush his hair!) and we all managed to go to church and be quiet and calm.

Family worker suggested we get some de-escalation training but then we discovered nowhere will train parents in this (yes, I have looked, various long phone calls to providers). However she is now suggesting self-defence classes which might work - my only worry is they seem to be a kind of martial arts training and I have mobility issues so can't do a stand up fitness class.

Last night however we had a horrendous incident, DS' go-to reactions to frustration are a) break someone's glasses and b) throw something and he threw something at my head which meant I had to go to A&E and get glued back together, so the police arrested him (I couldn't do anything about it as I was bleeding profusely and DH was, ironically, at the parenting course).

I'm going to vent a bit now and it will sound like I think it's all DS fault and he's doing it on purpose - but he is not helping himself - he has no thought that he might actually want to do things that make people like him, it's always someone else's fault, they made him do it, we are horrible to him and I'm just bossy (the original trigger was me telling him not to throw an apple he'd dropped on the floor, in the bin - please don't get into "sensory issues" and "ocd" or anything like that - normally he's not in the slightest bit bothered, it wasn't a common trigger and it was really just me telling him to do something, he'd already thrown the remote at me for saying he needed to choose between helping prep dinner or setting the table).

He does not conceive that getting along with people might make his life easier, that DD might want to play with him if he didn't pull her hair and pretend to bite her, and yes, I know it's ADHD and dopamine hits by escalating things and he says he doesn't want friends because he's too anxious to make friends but it just seems to be... some deep sense that we are evil and wrong and he is good and right?
And I know he doesn't lack empathy - but he only seems to have it towards animals, and fictional characters!

We've continued to look at new schools but they are all either "he's much too aggressive", "he isn't autistic enough" or "all the children are under child protection orders and severely traumatised and have been on the streets/County lines/knifed someone/severely abused by parents". So many people have heard "challenging behaviour" and suggested learning disability schools I am beginning to think we could just say "OK, send him to a learning disability school and we can wash our hands of him till he's 18" but what then?

Thanks for the update. It is good to hear you are still hanging in there even if a bit the worse for wear!

Are the "county lines/ knifed/ traumatised etc"
Schools special needs schools? Where I am they have schools for SEMH which would be where someone like your son would be likely to be placed.

These are special needs schools and need am ehcp to get into but have normal education levels like GCSEs as well as providing bteca and entry level stuff.

He's in a specialist SEMH school but they have an average of approx 0 GCSEs per year, it is more nurturing than the other SEMH schools we have access to (actually, there's only one other in this county and the next that does a reasonable level of GCSEs, and it's the one that has residential provision, and the much more severely traumatised children).
None of the other day SEMH schools have any academic success and some of them we have already visited and we ourselves have been scared of the children.

The main thing that helped DS better control dysregulation and violence was a group run locally by Barnardos, though funded by the local authority I believe. I wish it were less of a 'postcode lottery' for services and groups like that, if nothing else it makes it hard to share what worked if people in other parts of the country don't have anything similar.

(And to the people complaining about OP contacting the police - we were also advised to do this. Police did come out twice then after that refused to on the grounds that there are two adults in the house so we should be able to manage DS and need to do 'whatever it takes' to stop him. I disagree and so do social services on the 'whatever it takes'.

And it's hard to stay calm when you're covered in bruises and bite marks, or have just had your finger broken - I did shout and swear a bit at the universe in general after I felt the bone crunch.)

What kind of a group are we talking?
DS will not acknowledge that he has any difficulties at all nor that it would be in any way positive to be in a room with other children - he currently goes once a week to a church youth group where he plays pool with DH and doesn't acknowledge that the other children exist. But we can hope that he might go to a group at some stage.
The family worker suggested we try a coaching thing where a male worker talks to him and she talks to us, but that means he'd actually have to talk to the worker, which is unlikely, and acknowledge something needs to change which is also unlikely.
I didn't actually scream when my head was split open this time, though I did the last time (which was in fact a tiny cut with a lot of blood like most head wounds). I did however ring 999 and panic a lot. I have done a fair bit of screaming and shouting recently though.

EHCplan : residential special weekly school (they went m-fri home for weekend).

Provided the 24/7 curriculum they needed and literally saved our lives.

never what I planned for or wanted but exactly what my adopted child needed.

seemed totally counterintuitive ‘sending your child away’ (especially with attachment issues) but they had access to DAILY therapy and a curriculum totally suited to their needs and do they had a chance to succeed and learn.

when they started 2 in a class - left at 18 max of 5 with teacher and at least 1 often more ta support.

had to fight the LA hard to get it - but we were on our knees and totally broken.

totally changed our lives, allowed them to get decent qualifications including GCSE’s - would never have got that in mainstream.

gave us time to rest and repair and with the therapy and nurture and educational support that they needed - they are a totally different person and we have a brilliant relationship with them (now an adult and back home full time)

provision is out there - but is hugely expensive: they will never tell you about it - and you will have to battle - but totally life changing having your child (and you) finally be supported.

@drspouse It was a small group of other children, with quite a number of adult staff - DS got really attached to the staff, was very upset about never seeing them again which was difficult. It was referral only through the council, and was once a week for a term. I can't find info on the group online.

I don't know what they did, but DS went from frequent violent meltdowns and what felt like near constant dysregulation to meltdowns every few months and being much better at regulating himself.

We were told about NVR but were basically doing it already just from trial and error and things picked up on the way. Once DS has escalated to a certain point there seems to be no way of stopping the meltdown, he's just learnt to usually manage himself before he gets to that point now. Generally we keep things low demand at home so he can cope with school as much as possible - he attends a small class for children with additional needs and will be going to a specialist autism base in September.

That's what we want, @Anxiousandie, but he's not autistic enough for most of the schools, not learning disabled enough for most of the rest, but not wordly wise or traumatised enough for the others.
We literally can't find such a school at all (let alone close enough for weekly residential).

Unfortunately while we did try and remove demands for a while, it led to DS feeling he ran the house, telling us we were his slaves, and STILL having meltdowns, plus he doesn't think he has to do any academic work as all demands are unfair and everyone is just bossy.

At the moment, we are gradually training him to do reasonable things around the house and it has not noticeably increased meltdowns (he's just getting bigger) and he does help (reasonably often) and do some learning (but only at home). I'm also not convinced on theoretical/evidence based grounds that low demand will have good outcomes in the long term - we will just have a 16 year old who thinks we are bossy and the world owes him his food/clothes/tidy house/whatever he wants, instead of a 12 year old who thinks everyone will do everything for him and he doesn't need to clear his plate/wipe his own bottom/brush his own hair/be nice to anyone.

Hi OP, as he is adopted i would suggest he doesn't have ADHD instead he has CPTSD and possibly FASD and or Neonatal abstinence syndrome.

He needs a proper assessment via the ASF and then a treatment plan based on that. For children with CPTSD talking therapies are not generally recommended but non verbal projective ones are, such as equine or art therapy.

I see he is already in an SEMH school which is good. You must have worked really hard to get him there.

You and your husband will get blocked care and have to end the adoption if this continues.

Can you speak to social services about a weekly therapeutic boarding school placement whereby you share parental responsibility with the LA. You are not safe and you cannot keep him safe or your other child.

It is madness to continue this awful situation.

You must be exhausted. I don’t have advice but wanted to express sympathy with all you are going through.

I am so sorry for you. It sounds horrendous.

Are there any good times with him? Is there any time when he can join in on family life and enjoy himself?

Have you looked into Oppositional Defiance Disorder?

How are the other children with him?

I really hate to think of you being the victim of domestic violence - which is what it is. I grew up with that from a sibling and it was horrendous and had lifelong consequences.

Its worth re-looking at the adoption support fund - I’d be interested in knowing which therapies you define as ‘woo’ as I know many excellent therapists across a range of approaches who offer work funded by them. (I’m a therapist myself and we’re looking at accreditation- and I’d hope the blood sweat and tears I’ve poured into my published research might be evidence I’m not ‘woo’ as you put it!!)

NSPCC might be a good shout - they have an excellent podcast that speaks with families experiencing similar and they might be able to offer some resources .

We've looked and looked for weekly boarding. As I've said upthread there is nothing close enough that will take him.

We do have good times. Really good times. He's hilarious some of the time and very affectionate a lot of the time. But he still appears to hate us and regard us (especially me) as evil and bossy, or evil and his servant.

We know most of his prenatal history - FASD is possible but I don't see what a diagnosis would get us, as the schools tend to treat the behaviour not the disorder, and they have already written him off as not academic (when he is).

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.

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.

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.

This will sound mad but get him into horses. They are massively therapeutic and helps their focus and moods.
I suspect my daughter has adhd and we are finding that nobody is willing to help. The horses are the only things that help.
It's actually ruining my life. The system is a joke.

Our weekly ‘school run’ was an hour and a half journey each way. A massive commitment but so worth it as at last the right environment that could help and educate them.

as unthread - horses and equine therapies was amazing for my fizzy bundle (adhd and other diagnosis). It’s not just the time spent in stables that helps - it is the confidence built that transfers into normal life.

mart therapy also transformational - mine had no desire to talk to therapist but through art they got more in touch with feelings and emotions and only once they can identify and name what they are feeling can they start to deal with them.

we did a lot of therapeutic parenting under the guidance of an experience adoption child therapist. Very hard having to let go out ideas of what ‘they’ (the child( should be doing but adjusting to how we could adjust to make a simpler environment for them based on their attachment, sensory , trauma needs. Didn’t fix things overnight but did reduce the demands on them and help a lot - as did good OT based around sensory needs and regulation.

I Don’t think an adopted child exists that doesn’t have a degree of attachment issues. Even a baby removed at birth and placed straight into an adoptive mothers arms (very unlikely in uk as usually involves a lot of foster care etc suffers the huge loss of being speedster from the birth mother. Babies learn their mothers voice in the womb and even when removed after birth there will be a degree of trauma - that due to them being pre verbal is profound. It takes a skilled therapist to help you with this and post adoption services should commission suitable support.

it sounds like you are going through so much and I know how awful it is fighting the system and not being heard and being blamed instead. It is so hard snd saps your soul dealing with professionals who just don’t get it.

As an experienced adoptive and sen parent who has come through the other side - after such a tough childhood / teenaged time - I urge you to look widely for a suitable school - distance is irrelevant if I’m honest. it might be you do biweekly boarding etc or even termly - but the right therapeutic school is life changing for everyone.

push your post adoption services hard to provide support. Leaving you to deal with this level of behaviour is not on. HVe you discussed disruption - not something you ever want but if you are being pushed to your limits and can’t do it anymore they have to help you. No one wants a disruption and they need to support you to ensure this doesn’t happen.

look after yourself - caring for complex needs children takes so much from you and you must not allow this to break you. Easier said than done.

I really wish you all the best - as I know how close to breaking point we got ourselves.