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?

Respectfully- therapy is a uniquely personal experience- and therapists are all vastly different- and some are definitely better than others. Your child might ‘just’ draw in art therapy, others use it as a hugely powerful tool. Obviously not something to be shared in a public forum - but what are those cartoons saying/showing? What stories is he telling ? I also wondering if he’s picking up on your resistance/views on these approaches - if he’s being told he’s just drawing or just walking around the field -then he’s not coming into thinking ‘this is therapy and it will help me‘ .

Other creative arts therapies (of which there is ample empirical/systematic research ) can be incredible with the right therapist. From what you’ve described, I’d recommend looking into body -based therapy. It’s sounds like there is significant body dysregulation that needs to be explored and worked with. I appreciate the approach might seem woo - but (at least in my field) it’s from a neuroscience background .

I can personally tell you the research you are after does exists, is published and peer reviewed because I’ve authored papers so it might just be the case of looking in more specific publications (I agree that’s not ideal in terms of promoting work but that’s an entirely different debate ).

is prenatal trauma a possibility ?

We have so far looked at all schools within 3 hours.

I really don't know what PAS can give us. All the therapy he's had through school has made not one jot of difference to his ability to regulate his emotions. He can label them but he could do that before any therapy and he thinks it's ok to act on them.
Any solution that involves us sending him away till he's 18 is just going to have him back here at 18, bigger, more aggressive, and with no qualifications. He MUST get an education even though he doesn't want to.

Might not be the same for your son but I am part of a largish community of families with teens and young adults with different learning disabilities. Most are or were at special needs schools at secondary age so a different lot than your son. However a lot were quite violent and aggressive during teen years and all of them calmed down as that age passed so 18 to early 20's. There is hope that once hormones calm down a bit, he will at least go back to being as aggressive as he was when he was a pre teen.

Unfortunately he is a preteen and he is aggressive and has been since he was about 3!
He is also in a specialist school.

I was really hoping to give you a bit of hope. Sorry.

You cant live long term with a violent adult in your house no matter how much you love him. He needs to be somewhere else at least part of the time so you can recover a bit. Sorry if this has already been covered but can you access over night respite through your social worker? Some of my friends get a weekend off each month where their child goes to foster Care and others get a midweek overnight stay where they collect from school and drop off there the following morning. Having said that, we have been waiting for an overnight respite place since sept 2021 and still no sign.

“”And we are luckier than most because we don't have ADHD ourselves (DS is adopted and one, at least, birth parent has it) “”

it would have been helpful to state that your son was adopted in the first place. how old was he when you adopted him? This probably changes everything, trauma and ND, particularly ADHD, can present in similar ways and yet need very different approaches. I am a retired social worker.

Hi OP
All too familiar sadly. Has he been referred to CAMHS? You are being subjected to DV.. ring womens aid for support xxx

You should be getting support through the agency you adopted with - your child's problems are surely from adoption, rather than ADHD.

I am sorry you are going through this - adoption in this country is a minefield. Children are severely damaged before they are adopted, and then nothing is put in place to support them, even though in loving caring families they have the best possible chance of recovering, if they are supported properly

But as far as respite goes, it is unlikely - as a former respite carer myself the role is effectively voluntary, you only get expenses, and they rarely cover the actual cost of a destructive child. No real incentive for anyone to do it - I loved it but it cost us thousands overall, the number of times we had to redecorate or replace things

@aerkfjherf that will be why we can't get respite then! It is so short sighted because of the just paid respite carers properly, then families would be able to cope better and less kids would end up in full time care because families have completely broken down and can't cope any more, which ends up costing even more!

Our DCs were adopted at birth, essentially yes they were placed straight in our arms (foster care from hospital and we saw DS daily and then he was with us from two weeks). Agency washed their hands of us.

We found all the therapeutic parenting and low demand stuff very judgemental, totally lacking in practical strategies, makes him believe we are his servants, and attention/"connection" when he is heightened adds fuel to the fire. It is impossible to do "time in" with a child who is trying to push you down the stairs. Or hitting you with a broom. You HAVE to get out, and the only way to deescalate is to get out of the way, or get him out of the way. Any interaction is exciting, this is a typical ADHD reaction and the best advice we have had is walk off and stop engaging, and build up the children's responsibilities.
This is totally against therapeutic or low demand parenting but it works better than any of their approaches.
It just doesn't work well enough.

He sees horses weekly (when he is safe enough in the car to go) and he has had art therapy. Didn't make a blind bit of difference.

We have looked at every school within 3 hours. They are all either only for LDs, only for ASD, or very very scary.

He's not self harming so CAMHS won't touch him.

And you only get respite if your child has LDs.

Sorry that's overnight respite.

what does you child feel is wrong?

Are you sure he's not ASD as well? A lot of the behaviour fits with a comorbid diagnosis possibly ODD etc - there are plenty of papers online which suggest the behaviour may not be only ADHD. I know you trust your psych but have you asked the question - second opinion? Apologies if you have mentioned it.

We've done about 5 screening tests that you do before going to a specialist for ASD testing. All come back "don't bother testing, doesn't meet threshold".
We could of course lie on the screener but it wouldn't help with getting support OR finding a school because most of the residential ASD schools don't take children with behaviour issues.

A diagnosis of ODD would not change anything - would not give us any more support, or access to a better school, or any different strategies. I'm not completely sure the current thinking is that it's any more than extreme ADHD behaviour anyway.

I'm not sure what this question is referring to but if you mean, in general, he thinks we are bossy and evil because we make him do things like get dressed and turn off his games.
School is bossy and evil because they ask him not to kick people and to do school work, and they no longer let him game all the time after we asked them not to.

Gaming is incredibly addictive to children who have ADHD. I'd honestly stop it altogether if it wasn't a useful bribe! He's quite reward focused luckily.

That doesn't sit right with my experience. Paperwork completed (home & school etc), referred to psych who then tests/questions with an open mind for all scenarios on the spectrum, then diagnosis. Then a how do we manage this conversation eg meds, lifestyle, parenting style etc.

I get what you are saying that further diagnosis won't help. I guess it must be your part of the country that does things differently. Best wishes.

I mean, does he feel like he is missing a diagnosis of something? does he want an investigation?

I don't think you should assume trauma and attachment difficulties aren't an issue just because of an early adoption.

Can your adoption agency offer any support? Many can.

It seems like you maybe have got the wrong idea about therapeutic parenting - this is a course I deliver professionally. I wouldn't expect anyone teaching therapeutic parenting to be telling you to use any specific techniques (such as time in), but working to share ideas that some children need to be parented radically differently to others, and that it can be more effective to focus on your connection and emotional regulation before and above correcting behaviour in traditional ways.

It might also be worth seeing if CAMHS will refer for a positive behaviour support plan.

He's 12 and has little insight into his own thoughts. Given many adults only click they are neurodiverse in their 40s, I'm not sure he's likely to know!

There's little evidence therapeutic parenting works. And maybe you are a good and non judgemental practitioner but that's been my experience - if you won't do it absolutely perfectly, you are an awful parent.
I honestly don't think spending more connective time with us would either be possible, or good for DS. We already spend most of his waking hours with him doing what he wants to do. He does nothing without us, he is incredibly anxious about speaking to people, going places etc etc. He needs to have his horizons broadened, not cling to us. He would ideally have us sit with him 24/7 watching the preschool programmes he wants to watch. He won't even let DD watch something else in a different room. We cannot spend more time with him, it's just not possible. There is no more time.

But if we try and therapise him when he's upset, it just gives him extra attention when this makes him escalate. He doesn't have insight so asking him "what's wrong" or trying to make suggestions just makes him think we are going to change our minds (often when something is impossible like the shop is shut).

Please can you all read:
The adoption agency doesn't offer anything.
CAMHS only take referrals for actively suicidal children.

The procedure for all healthcare systems for a diagnosis of any neurodevelopmental condition is a screening measure followed by an in person assessment. You don't just say "hey I think my child has ABC, assess them now". I don't really know what you mean by "scenarios on the spectrum", do you mean a doctor would assess for ADHD, ASD etc all at once? If you got past the screening for more than one condition, sure, that could happen, but otherwise it would be like doing a full body x-ray for a sore leg.

If local post adoption services not able to offer anything then it is time for them to commission specialist services.

we are London based and at our time of greatest need coram, post adoption centre and family futures were the go to places for highly specialised support. (About 10yrs ago)

not sure what is currently out there as times and places move on - but these places do exist and are specialised and we experienced nothing but empathy and support at the one we went to (FF) as they really understood the presenting behaviours and the impact these have in the whole family.

Local Camhs only good for medical diagnosis in our opinion then quick to discharge as acknowledged that they didn’t have the expertise for complex needs and adopted children.

we were seen at great ormand street (reknown London children’s hospital) can’t remember exact name of clinic but was a tier 4 camhs service for adoptive children with attachment issues. Again was helpful .

hope this helps. Apologies if you not in the south of the uk - i know resources are very patchy all over the country.

Unfortunately we are in the North, and quite rural!