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Original poster

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?

OP posts:
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aerkfjherf · 14/06/2024 16:50

drspouse · 14/06/2024 16:23

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.

Show quote history

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

Undercover4ever · 14/06/2024 16:39

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.

Original poster
drspouse · 14/06/2024 16:23

aerkfjherf · 14/06/2024 11:52

what does you child feel is wrong?

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.

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Original poster
drspouse · 14/06/2024 16:19

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.

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Undercover4ever · 14/06/2024 15:59

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.

aerkfjherf · 14/06/2024 11:52

what does you child feel is wrong?

Original poster
drspouse · 14/06/2024 11:47

Sorry that's overnight respite.

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Original poster
drspouse · 14/06/2024 11:47

And you only get respite if your child has LDs.

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Original poster
drspouse · 14/06/2024 11:46

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

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Original poster
drspouse · 14/06/2024 11:45

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.

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Geneticsbunny · 14/06/2024 11:14

@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!

aerkfjherf · 14/06/2024 09:04

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

Loubelle70 · 14/06/2024 09:01

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

Oceancolorseen · 14/06/2024 08:58

“”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.

Geneticsbunny · 14/06/2024 08:46

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.

Original poster
drspouse · 14/06/2024 08:33

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

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Geneticsbunny · 14/06/2024 08:12

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.

Original poster
drspouse · 13/06/2024 22:59

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.

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IMBCRound2 · 13/06/2024 22:22

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 ?

Anxiousandie · 13/06/2024 22:10

drspouse · 13/06/2024 21:30

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.

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.

spicedonion · 13/06/2024 21:34

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.

Original poster
drspouse · 13/06/2024 21:30

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.

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IMBCRound2 · 13/06/2024 18:51

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 .

MILTOBE · 13/06/2024 16:39

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.

BardsAreAssholes · 13/06/2024 16:13

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