To ask why there is no support?

[drspouse]

We have DS who is 11 and has ADHD and a lot of challenging behaviour and DD who is 8. DS is in a specialist school and though he likes a lot of aspects of the school he is still challenging there. He is actually probably better at home -though he is on a hair trigger at both places we find he settles down more easily at home.

We feel like the best ways to help DS are to work out what's an issue for him (but we do not remove everything that's causing him difficulty, partly because we can't - e.g. he slapped me because I turned on the wrong TV for him - I had no idea which one he wanted and I didn't have a problem with him watching the other TV, until he slapped me; and we also know that if he is learning a new skill he will resist as hard as possible but we are not doing everything for him for ever more, though he'd like that) and trying as hard as possible not to react to it.

DH struggles more than me with his behaviour in that he is more likely to be reactive but I can't help myself reacting sometimes and DD shrieks when he does anything to her (ranging from growling at her to attempting to strangle her). DS attacks me more than DH but DH is not exempt either. A few weeks ago we came back from holiday, we asked both DCs to help get bags in the house/sort out what they wanted for dinner/get plates etc. and DS broke a window and a mirror (and quite a few plates).

We called the Social Services emergency number, were told we'd get help and this help consisted of an email detailing the local self-referral for mental health support (we've both maxed out our annual allowance of this) and links to online support groups (for an 11 year old who isn't allowed on the internet on his own and who wouldn't know where to start with this kind of thing anyway, and who says he doesn't want any friends).

Last week he slapped me and pulled my hair when I told him about something we were planning, then threatened to throw a carving knife at me, we called the police who were honestly excellent and said we'd be escalated for additional help. We had a phone call and were told that one person (not two, so as not to overwhelm DS) would come round around tea time as this is a pinch point for us and we really need some advice on how to handle it.

What we got was Early Help were two people (sigh) came round and... you guessed it... gave us links to online groups, hilariously told us about a "group for 0-11 year olds with SEN" which I was slightly puzzled about in January as it meets at 1.30 on a school day so I rang up and they said "It's a typo, it's for 0-5". They are the third group to tell us about this "group". They said they can't give us any direct advice. They also suggested a parenting course!

Last time Early Help came round they suggested sticker charts and that we should "stick some house rules on the fridge". Oh, and a parenting course (we actually did one that was semi-helpful, directed at children with ADHD.)

Both DCs are adopted but when we have asked for help from the Adoption Support Fund it has either been things we cannot access or things we know DS won't participate in (e.g. parenting courses that we must both attend when we have no babysitting, but they won't accept us unless we both attend, or a therapy session on Zoom that would take DS out of school for a day a week and we'd both have to reduce our working hours just to do it).

I am currently seeing a counsellor privately and I try to do things that help me stay calm (mainly exercise/Pilates at the moment but I've also done a lot of mindfulness in the past). I'm doing better than DH at reacting to DS and I think this helps but I'm not perfect and I don't think DH feels able to help himself at the moment. DS knows which buttons to press (I'm going to break your glasses Daddy) and DH responds. I've asked DH not to even discuss what we are doing in front of DS because DS has the idea that Daddy would let him do what he wanted if it wasn't for stupid Mummy, but DH gets wound up too and tends to tell me I won't let him have any ideas (not helpful, DH, not helpful).

We've asked for mental health support for us (I think DH would do something that was "provided for him" but he doesn't have any confidence that a "mindfulness course" would help him or that he'd even be able to do it, and we've asked for direct advice in the home about how to deal with DS. We've also asked for respite. We are waiting for a disability team assessment but last time we asked we were told DS "isn't disabled enough".

How is there NOTHING for us? We are at the point where we cannot keep DD safe, and when DS is bigger then him attacking me will not just be annoying/causing bruises but actively unsafe. We can't even find anything that we can pay for (we are both professionals and we can pay for help in the home/courses/counselling/respite but can't find anything that helps, or any carers who can cope with DS). Being professionals seems to work against us TBH - we are supposed to be free to go to lots of parenting courses during school hours, and not to question what we are told, but if the social workers say "oh you should do this parenting course or go to this group" we are supposed to say "oh yes thank you we are much better now" but instead I look up the parenting course and find that it has no proven outcomes with children of his age with ADHD, or that the group isn't actually for his age, or in fact doesn't exist.

Do they actually want us to put DS in foster care? Is that what they think we should do? Or for a vulnerable 11 year old who needs a hug at bedtime to go to boarding school? Or are they going to wait till it breaks down even further and DD is actually hurt badly and then she will be removed?

Is there actually anybody that the current system helps? Does a parenting course and a sticker chart make a difference to any families who have a child older than a toddler? We aren't even in the worst possible situation - I know there are families with teenagers that are even harder to deal with and have much more power in the household, and children with much less manageable disabilities than our DS who need physical help, who don't sleep etc. etc.

Well done if you've made it to the end! If you have any experience at all of anything that ACTUALLY HELPS I'd love to hear it but if you are also in the same boat please feel free to vent as well.

My son has his OT at a equine therapy place as that was the only locstion he would access it. Its provided under his ehcp. The OT makes use of the stables and horses. Its not equine therapy. It a qualified OT who is qualified in sensory intergration therapy.
Just in case thats something you can negotiate somehow.

drspouse I'm attaching this rather than posting an external link. Although you are currently awaiting an assessment, it would be worth your while to research these cases which are the most recent precedents for Councils who have been identified as failing to adequately allocate resources to cases such as yours, and have had to pay compensation. Showing that you are aware of recent case law often supports your argument for funded support. Your case is strengthened by the adoptive status of your DC.

I work in this area and urge you to stand up for your rights.

Sorry you are going through this, and good luck.

I wouldn't mind people being evangelical but that is not the issue, the moderators of the group are actually trained experts in the system so are supposed to have good knowledge of it.

Anyway I'm glad it's not just me, I am thinking of starting a thread asking for people's experiences, the problem is it kind of sounds extreme as a method or theory, so people are put off it before they even begin, and I'm not really interested in people who have dismissed it without trying it but want to know what real live experiences are when someone is fully invested in it.

Interesting you mentioned ADHD dude as I've been seeing this theme in his posts as well. Honestly all these influences at the moment seem to be completely crashing in and making me wonder what the hell I'm doing.

And meanwhile I've instigated instant consequences for DS2 hitting DS3 and it's stopped it dead. In about 2 days and it's stuck for over two weeks since. I'm not using that for anything else, and I'm not seeing any horrible pushback in other behaviours that all the anti punitive method people insist will definitely happen.

I'm tying myself in so many knots because I really really want to believe the theory of these things but in practice it's too hard, and I wonder if that's not actually the problem in the first place.

DS1 did grow out of being explosive though he has other issues now, mainly chronic teenage sluggishness that DH insists is laziness and his doctor says yes let's try meds but I'm feeling guilty about it like I'm doing the wrong thing. Even though I believe in medication as a tool. I'm just constantly flip flopping (mentally, I do pick a consistent approach and stick with it) and completely unsure which direction I want to go in or believe is true.

Hope you’re ok @drspouse
Not sure if financially possible but have you considered hiring a private psychologist?

We can't find anyone who can do what we need (though my counsellor is helpful) - we need a coach coming into the home more than a therapist - it's no good someone talking to DS as he wouldn't talk to them or listen, as he doesn't have enough access to his emotions.
We had Early Help on the phone again, I've referred us for a disabled child assessment but apparently she can't see it on the system, and when the SWs came to the house they said they couldn't come to the house at difficult times to observe/give us hints but then on the phone today she said "well, if the SW comes at tea time and that's a trigger point they can give you advice" so I have no idea what's true.

Drspouse The only other option I can think of would be a behavioural analysis practitioner. This is someone who would come and observe normal family life and point out possible solutions or changes you could make. There is I believe a register of BCBA certified practitioners. I have found this to be more practical than other more woolly approaches.

That does sound practical and (hopefully) different to ABA (as in, not someone who would "retrain" DS in the dog-training way that I understand ABA to be)?

Aba is not dog training at all. I suggest you do some more up to date reading of behavioural approaches! However, I wasn't suggesting an ABA programme as such in any case. I looked into using a behavioural analyst for my ds. He had lots of challenging behaviour in his last residential home. The therapist I found was going to assess him by doing a functional analysis of his behaviour. In the end, he moved out before I could get it organised. Nevertheless it looked like it might offer the same kind of in depth look at what behaviours your ds engages in and their function. It would also of course look at how the people around him elicit and support these behaviours.

If you want the name of the company I was going to use, let me know and I will PM it. They are in the East of England.

Camhs are shit and quite frankly dangerously so.

Newbold is fine up to the point you want a functioning adult at the end of it.

Tbh you are often faced with nothing awaiting the inevitable day your dd tells school and CP starts.

We have a disability socail worker who I told in the new year I wanted to run away and never return. Sw said I should do that if I needed to!! I told a retired paediatrician who told me she has seen children removed permanently after mum has taking the same advice from socail care.

My son is no longer violent thank god. But if I'm really honest I would feel better having a break down off radar than go begging for help now. In the new year I had what felt like a mini break down and had thoughts of punching the senco to get banned from school and also killing myself. Thank god that was only for a short time but telling the gp and socail worker got no reaction. I felt almost phycotic abd all the asked was "is this a CP isdue?" Of course i said no. Because i punch a teacher and then harm myself how could that possibly impsct my childrens welfare? Its ironically fucked up. So my take home from that was tough shit on me. I had weird compulsive intrusive thoughs but didn't act them out so it's all wonderful. Thank god they passed quickly!

If I ever get overwhelmed like that again I will double down on hiding it. I very rarely drink but sometimes when it's all too much, maybe once or twice a year I buy vodka and drink it during the day until I'm utterly pissed then tell dh I have a migraine so can he pick the kids up. No one notices ever and it honestly is better for me than begging these people for help. If I told the social worker that 18 months ago I got so pissed at lunch time I couldn't collect my kids she would probably congratulate me on finding a good coping outlet. They are ticking boxes. They is no interest in my child.

Consequences do work with ADHD. They just have to be immediate. ADHDers are time blind so aren't driven by long term consequences.

I think there's more going on with your DS than "just" ADHD though. And as PPs have said trauma can masquerade as ADHD but requires a very different response.

@drspouse sorry, I didn’t mean a psychologist to provide therapy, more of an assessment and treatment type psychologist. Someone who came in, observed then recommended?

Both those last posts do make sense, thanks.