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?

Another vote for DDP -

https://ddpnetwork.org/about-ddp/dyadic-developmental-psychotherapy/

Something you could even looking into learning and using yourself if affording/finding a therapist isn't an option, great for de-escalating. Good luck I can't imagine how worrying this is for you 😔

I am currently doing research into services which are moving away from the approach you are defending here, to instead focusing on what the family say they actually need. The projects I am researching are all really, really positive about the benefits this new approach is bringing, as are families.

In OPs case, at a minimum it would at least be helpful if SS could signpost to other services/ charities which may be able to help, even if they cannot.

Sorry if I’ve missed some details OP. Is there possible FASD?
’The Explosive Child’ by Ross Green is a good read.
other than that can you access NVR? Sometimes that can be through Early Help social care teams.
is medication optimised? I know the reviews are much less frequent than is ideal because of service demands. Works for us as my DC could likely benefit from an increase but I’m concerned she needs to eat more for that to be feasible and she’s still quite young.
are there any social communication concerns?

Ok suggestions in a fairly random order:

A TA from his school might be good to approach for respite. I worked at a school that took a large number of Sen students and a lot of TAs did this. He will have a relationship with them already and they will be experienced at dealing with his issues.

Positive handling is complicated. Most schools do have someone trained but the first response is de-escalation and the second response is evacuating the room. Only the third response is positive handling (ie restraining the child). This is because the child will find the restraint unpleasant and it will harm the relationship between the child and whoever does it.

So following that model... de-escalation first. This is something where you can be taught general strategies but honestly it's what works for the specific child. I've worked with kids where I sang them a song, I've worked with kids where we got play doh out, etc etc.

You need to be having conversations with him about the violence when he is calm. Talk to him - say it's not nice for you and he must be upset. See if he can suggest anything the helps him calm down. Might be a song, might be a cuddly toy, might be taking some time to watch YouTube. Then implement the agreed strategies when he's getting violent.
Eg I can see you are upset. Let's sing "the wheels in the bus". It sounds frankly weird but the fact you are doing stuff to de-escalate that you've agreed on helps longer term,

While you (or DH) are de escalating everyone else leaves. That keeps as many people as safe as possible. Put a lock on bedroom doors etc so he doesn't rampage round the house.

These guys seem to offer positive handling for parents? www.positivehandling.co.uk/de-escalation-interventions-for-parents-fostering-adoption/

Apologies, I wrote this earlier, so it's answering earlier questions, for some reason it saved without posting.

I don't post on the SEN boards because they are very quiet, but also because the approach we take is having a positive effect albeit very slowly, but it isn't everyone's cup of tea (to put it mildly) and we do not, for example, remove demands or triggers as a blanket manner, we do look at them individually but our aim is to expose him gradually to them not remove them.

Talking about feelings with a neurodiverse child is also pretty useless. For a child with ADHD of his age, talking therapy doesn't work. I'm sure it's great with an anxious teenager who will go along with CBT, or an adult who has ADHD and wants to understand their own brain. Not with DS.

We do use something like NVR, which again is working. Just very slowly.
As I say I'm a scientist, and I'm not going to respond to everything individually, but I do investigate all possibilities that have been put to me for their effectiveness, so I won't say "that's not effective, neither is that, that's just snake oil" for every suggestion. There's a lot of snake oil out there.

I do know what we need but we just can't get it. We KNOW we need to be calmer and less reactive. We KNOW we need to learn how to de-escalate. We also know that we need violence to have zero positive outcome (not attention, not mayhem, not "you need to calm down with a screen"). We just can't get help to put it into place and to get our own mental health in order.

And yes, the police HAVE TOLD US TO CALL THEM. Bore off if you are going to accuse us of wasting police time.

Now some new answers
There may be FASD though he's pretty bright. It would not alter the strategies for behaviour we don't think - if he has memory problems, we work on them, if he has a spiky academic profile, we work on that, we aren't at all sure there would be a value in a diagnosis and they can be expensive and long winded and frankly his school needs no more excuses to write him off academically.
It's not like we think he's just an annoying child who doesn't try/randomly decides to hurt us and have no insight into the reasons for his difficulties.
We could possibly beat down PAS door until we got an FASD diagnosis but what would be the point?

We have done bits and pieces of NVR and the SPACE approach which is what we use for anxiety is very close to this. It hasn't been mentioned by SS but it's worth asking, as I say they have not told us what they offer, only suggested the GP.

We know what we rejected from PAS, it was Theraplay, all the other therapists we've spoken to since have said it's unethical to offer therapy if there is a 6 month commitment whether it works or not, but PAS said we couldn't have any more therapy unless we did that one. They don't offer any evidence-based therapies for his profile anyway.

The Positive Handling has always been put to us as restraint etc. but we don't do that (but I'm sure I could have misunderstood). Another one we could ask SS about.

Missed some relevant questions:
Medication keeps changing and is definitely effective but the effect goes up and down (mainly due to growth!). We have asked and asked about non-stimulants as well as stimulants but the consultant is reluctant. I'm seeing him again later this week as DS also has epilepsy and needs a review on that. I think it's probably caution around clashes with his epilepsy meds as we had a nasty spell with a really bad fit and long hospital admission previously.

He doesn't really care if he hurts me. After hurting me he says it's funny, and then keeps bringing it up and saying "so how did you get hurt Mummy? I genuinely don't remember, oh that's so funny" so we don't talk about it as that just gives him attention for yet more unwanted behaviour - he wants to make us cross again either for the original behaviour or for laughing at it. We take the same approach as when he went through a spell of breaking glasses accidentally on purpose "oh it slipped" because he had worked out we got concerned the first couple of times it happened. Now we just don't turn round or speak if he breaks something, if it was by accident we can sort it out later, if it was on purpose we don't want to feed it.

Can i ask is violence has positive outcomes in other settings? Its just one of our biggest hurdles was school would 'reward' the behaviour we were trying to stop by sending my son home. Which i understand from their perspective, they have to be safe and i"m not suggesting they could have done anything else. But since going home was what he wanted it was a bit tricky teaching him that challenging behaviour doesn't get you what you want.

So i suppose what i am saying is, is everything in order elswhere as you dont parent in isolation. you dont need to answer me - i was just meaning its something to think on.

No advice OP but just wanted to say you’re not wrong. It seems unfair that you can’t get help. It’s a sad state of affairs all around.

@Spendonsend He is in a phase of ripping things off walls at school and my impression is they try to "talk to him about it" where our first port of call would be walking out of the room and never mentioning it again. Also, they have an outing on Friday afternoons and he's been there 1 1/2 years and has never been out (even to things he likes, climbing and bowling) because he just either gets aggressive when it's mentioned or says "I will be naughty so I don't have to go" and lo and behold, he doesn't have to go, and he becomes more and more anxious about going off school grounds.
We have spoken to school about 5 times about the outings and twice now about the ripping things off walls but have had no answers that help anyone.

Hi OP, have you spoken to the National Assoc of Therapeutic Parents? They're really reasonable to join, have counsellors on the helpline and have a good reputation for advocacy and signposting in fostering and adoption? Not sure if they'll be any help, but maybe worth a try. Another vote here for DDP too, it was life changing for us

Have a look here op:

https://www.pegsupport.co.uk/

Not certain, but they may be able to point you in the right direction.

Edited to say: I have adult child with ASD so I know the word “abuse” is possibly triggering in this context.

Thanks @Tarteline843 I have contacted them and the nice man rang me back and gave me lots of pointers to finding a course!

https://www.newboldhope.com/

I can’t advise on the services side of your issues but this may help with the aggression and violence

I'm afraid I threw Yvonne Newbold's book aside in despair after the second chapter. I'm also not that interested in having a child who never gets dressed, never washes, and still is aggressive like some of the children in the FB group that follows her methods.

Are both of you reasonably heathy?

Could you and DH take self-defence classes or learn the type of restraint techniques security people use?

I know you shouldn’t have to, but you want to stay safe!

I think really need to learn de-escalation as that's what's going to be better in the long term - but we have a couple of leads on that now.

remind me not to offer help in future!
rude

@drspouse I don't have specific advice but when dd was very unwell (ADHD at its root which caused depression and anxiety), when CAMHS closed her case because we refused group therapy in the middle of the school day, at the same time as a three hour A'Level session, when she had just started a new school, and refused to offer an alternative despite being advised it would make her far far worse because the self harm related to her perceptions of poor performance, I got in touch with our local MP. CAMHS reversed their decision within a week once he had been in touch. Worth a try?

Honestly, your DS appears to need help far more than dd did. DD recovered and manages her ADHD (ADD type) but sadly she only recovered because we found a consultant adolescent psychiatrist who diagnosed her and got in place the right therapy. It was very expensive. CAMHS said she was too old at 17 to have ADHD and laughed.

An fasd diagnosis combined with the difficult behavioural stuff would probably get you access to the disability social work team and camhs. Which would in turn get you access to respite .

It may be different where you are but in our area ADHD is not considered to be a disability by the council so you don't get any access to any respite support or any of the social care parenting support.

The disability social worker thing is apparently only for learning disabilities - not sure we'd get one even with an FASD diagnosis given he's quite able.

I would recommend Sarah Naish’s book on therapeutic parenting. Your son is presenting with some pretty classic signs of trauma. There is also a Facebook group for therapeutic parenting.

I’m so sorry you’re finding it hard to access support. Have you tried the adoption support fund?

Fair enough. Everyone in our area has had their social worker taken away even if they have a learning disability unless they are accessing overnight respite so it may not have been "enough" anyway. Getting help is so difficult. I found that using the words "crisis" and "family breakdown" were what eventually managed to get us some support.

I also have recently been diagnosed with PTSD as a result of trying to sort out some help and not being able to.

This does not surprise me at all.

I know there have been lots of ideas on here and many of them repeated. I am not ignoring the ones I haven't mentioned, it's just that I risk people being rude/accusing me of not loving my child/telling me I'm not trying hard enough if I tell you why I have already tried XYZ and not found it helpful, or I've looked at it and found it to have no evidence base so will be looking elsewhere.

Without meaning to sound rude, it is a bit like when I asked for ideas for a birthday present for DD and got lots of good ideas, some that I had already said wouldn't work, and was accused of ignoring posters because I didn't say "that sounds amazing, I'll definitely get that" to every post.

I am reading and some of the ideas are worth following up so thanks all.