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.

how about part time residential care? Boarding Mon-Fri? I am so sorry you are in this position, it sounds awful. I do think you are misrepresenting your son slightly, leading with ADHD. he may have ADHD as well, but these types of behaviour you are describing are something else entirely. I am not going to hazard a guess as to what, but maybe a further diagnosis may open up more doors? But there are state weekly boarding schools for children like this

We tried NATP but they just say "keep calm" which we find impossible, I know a lot of parents feel like they are quite directive, to put it mildly.

They are quite directive because therapeutic parenting can be quite counter intuitive at times and is a very long term approach, there are no quick fixes I’m afraid. Sarah Naish’s A-Z of therapeutic parenting is a useful resource because it addresses a whole range of issues and behaviours with good guidance about where the behaviours stem from and what helps.

It sounds like you need something to take the “heat” out of family life. Keeping calm doesn’t solve everything but being reactive escalates everything, but it goes against your own survival instinct to remain calm in the face of threats and violence. That’s one of the places therapy can help - to give you/your DH space to process day to day life so that you have the capacity and awareness to stay calm in the face of provocation.

What have you tried so far (ie strategies you’ve used consistently over a period of time, rather than things you’ve read about and decided are unsuitable). There may be practical suggestions folk can make if we know what you’ve done so far.

Have you looked at a really good residential schools? Maybe don't dismiss them completely, especially with DD to consider.
Obviously every DC has their own unique situation but when you talk about hugs and help, the right place will do this. I know of very happy boys emerging from Swalcliffe Park for example, who entered as such different people.

@Jellycatspyjamas I've said what I think we need. I don't know how to get it. I don't think individual therapy for DS will help, he's not really able to engage, he gets OT at school at least and it's given him a way to ask for sensory breaks at school but it hasn't transferred to home in any real way.

I can't force DH to get help, I'm not his parent, he's an adult, I have ideas but I can't promise him they will work. I don't even really know if it's me that needs more help than him - I could be wrong and it could be me that needs parenting boot camp not him!

I could be wrong about what we need as a family too but it's all things that haven't been tried - and we are clearly both not doing everything right and not able to work out what is wrong hence wanting someone to come and work out how we can better interact with DS.

If you are refused an assessment via the disabled children’s team push back. DS is entitled to an assessment, You can complain (Contact have a model letter to do this), ask for an independent review and complain to the LGO. Judicial review may also be possible.As well as the assessment via the disabled children’s team for DS request a carer’s assessment.

Have you requested an early review of the EHCP? It isn’t currently meeting his needs. If you do this and appeal the content you can ask SENDIST to look at social care provision too.

For DD, contact your local young carers service (variable depending on where you live) and Sibs if you haven’t already.

Please dont blame yourself- adoptive parents can be placed in a no-win situation. I don't expect there is anything you could have done to avoid this.xx

DDP is a type of therapy that works with the parents and the child, it’s evidence based for kids with attachment issues and trauma history and does look at how you interact with each other etc. We’re accessing it through CAMHS, which was a bit of a fight, the therapist meets to you and your child sometimes together, sometimes separately. It’s the therapists job to engage your child, not the other way around, the right person will make a world of a difference.

PP, I appreciate my OP was long, we feel we need:
Mental health support for us, not to get so angry with each other and DS (especially DH).
Respite for DS so we can spend time with DD (and some wrap around care but that's a pipe dream).
Help with our day to day interactions with DS beyond "just keep calm and don't react".
DS has a diagnosis and is on meds. He's like this on high levels of meds, low levels of meds, or no meds (but he's worse).

Ok I missed this post.

Mental health support, if you can afford it, is easily sourced privately and at a better standard than your local authority/NHS can provide. Organisations like Barnardos can provide adoption informed therapy for parents, I think in England therapists needs training in adoption specifically but the BACP/UKCP directories can help you find someone appropriate.

I have no answers for wrap around care, I’m about to face the same issue when my DD starts specialist provision in August so I feel your pain.

There are a number of processes that can help with day to day interactions, DDP which I’ve mentioned already is excellent for this. So is VIG (video interactive guidance), where interactions are videoed and you watch back with a specialist support worker who helps you observe interactions and think about changes you might make or different ways to approach things. That can be sourced through your local authority or depending on where you are the NSPCC might offer it. I think there are also private providers who can do it.

You can also access therapeutic parenting classes - some organisations provide it independently of local authority but you will need to be available to do it. The reality is most family supports take place during the working week, which I know isn’t ideal.

I’d also say you’ll need a multi-faceted approach, including therapies for your child, support for you and your DH along with things like SALT and OT. If your son is in a specialist provision some of those should be available in the school setting, revisit your ECHP because my understanding is they can write specific therapies into your sons plan which may be a quicker route to help that post adoption support.

Seems like you are in need of immediate and hands on support and also because your DD8, is also suffering, I suggest you contact the Citizens Advice Bureau who should be able to put you in touch with organisation(s) who can support you.

Is there any way to appeal, and seek what you should be getting in terms of PA help?
Surely he is being unfairly treated, which is illegal?

We were offered VIG (and we'd love to have it) but it was withdrawn because we were told it's only for families with abuse (I'm not sure "losing your rag and shouting at DS to stop pulling DD hair" counts...)

I've lost track of what I've said and not said, sorry, but he has OT at school and is getting SALT and he has improved in his interactions at school (though still prone to extreme outbursts when not regulated, he's more integrated into the classroom when he is) it hasn't helped much at home. He's been getting all this since about Nov.

As far as what we've tried:

1. we have been on a Connective Parenting through NVR course, which we found helpful, and we try and prioritise what's important currently (they have a "red" vs yellow and green issue system). It has not broadly changed his explosive and aggressive behaviour though. He isn't mature enough to sit down and listen to an intervention which is one of their main tools.
2. We went on a 123 Magic course through our local ADHD support group. We tried that steadily for months and months and it does occasionally work to get DS to stop something a bit quicker than he was going to anyway we can't provide anything in the way of consequences, nor do they work very well for him.
3. We have tried (for YEARS) trying to work out what his triggers were and avoiding them (low demand stuff) but after several years of doing this we worked out it was just reducing the things he would do, making him rigid, and increasing his responses to tiny variations e.g. which TV is on or the size of plate his burger is on, or indeed explosions to things that were NOT different. And I am really disturbed by the Newbold style stories of children who sit around in no clothes or stay in bed for days on end. They sound depressed - we had DS depressed for one summer, refusing to go out at all, telling us to throw him under a car. Inactivity breeds depression.
4. We now mainly attempt to do laddering for things that are causing him anxiety but it's a really slow process and his default position for anything that makes him anxious is to attack us. He gets there if we keep at it but we can't sustain the household if everything new causes an attack because we cannot prevent new (or things that aren't new, but he thinks are new) things from existing in the house, we can't stop DD existing, we can't anticipate his every need and we can't do everything for him which is what he would like (he thinks, but he STILL gets angry so there's no real point in doing that anyway). So to take an example, we ask him to read to us most days after school because the books he reads at school are too easy for him (he's in Y6 and they are easier than the ones DD reads happily in Y4). The first time he did this he poked me with his pencil and would only read half a page. We have worked up to a whole chapter a day. We don't do it every day due to pressure of stuff but if we miss a couple of days we go back to square 1.

Every single parenting circle/group/FB group/in person group/Zoom group we have been to, though, consists of other parents telling us the exact same issues we have, us saying "yep", and them complaining they don't have an EHCP for their child, and us telling them how to get one. Every time we talk to school/SWs/etc etc they tell us "Join your local parent carers group!". I am not really interested in joining another parent carers group, listening circle or Zoom chat. I wouldn't mind looking at the NATP training videos but I do not have time any more online support or moaning (by me, I mean!) to a "listener".
(And sorry but yes, you have all been designated moaning-receivers today...)

I also find that a lot of the things recommended (e.g. Theraplay) don't have much evidence behind them. This is the one that we were told we had to do 6 months to see any change and we weren't allowed to try it - we had to commit to 6 months (and it was via Zoom, which would have meant us sitting on a Zoom meeting weekly for 6 months with DS in another room). In fact another therapist said she thought this was unethical - that you need to be allowed to break off therapy if it isn't working or making it worse. So I looked into whether it actually works for children like DS (who has been with us since a baby) and there was no evidence it works for anyone, not in the way that we'd expect from a reading intervention or a drug.

I find this post offensive. Maybe they’ve tried everything? Do you have ASD chikdren?

I'm so sorry OP.

Did you say your son will be going to meet some horses next week - what is the context around that?

Equine therapy can be really beneficial and soothing for attachment trauma, and it is quite different to most other therapy. I wonder if he is intrigued by the horses when you go next week, would there be anywhere he could do equine therapy?

Horses are incredible for helping to heal angry, wounded young people.

It doesn't matter if he's not sporty or doesn't have good motor skills, because it's not about becoming a great horseman. Just being around the horses and working with them on the ground is very therapeutic if he takes to them. I mention this because if he likes riding them, then great, but it also doesn't matter if he doesn't want to ride but enjoys being around horses.

I agree with an earlier post that advised you to move this to the Adoption board. Unless you have adopted kids, you have no understanding of the challenges they often face. In your place, I would contact Social Services and say the Adoption is breaking down and you will be forced to place your son back into foster care, unless some intervention, including respite, is put in place. BUT, you have to see it through, hard as it will be as SS will do everything in their power to avoid providing any type of help which costs money. And sadly, for some adopted kids, residential care might end up the only safe option - for all of you. Sending hugs and wishing you all the luck.

You need more OT support specifically to look at the home situation. And MH therapy for DS.

And I am really disturbed by the Newbold style stories of children who sit around in no clothes or stay in bed for days on end.

I’m not a fan of Newbold for exactly that reason, going at your child’s pace/letting them “lead” isn’t helpful for children like my DD (who in some ways sounds like your DS although we don’t have violence from her).

Theraplay is good for building bonds and supporting attachment but it doesn’t do much for behaviour. It’s also entirely possible to practice at home without 6 months of weekly sessions - that sounds unhelpful and impractical.

It sounds like your son has a high need for control, does he fit a Pathological Demand Avoidance profile? It’s part of the ASD spectrum and shows as very high anxiety when a child feels demands are placed on them (eg putting shoes on in the morning counts as a “demand”, not that you as parents are demanding). If so there are parenting techniques that can help with that - if you think that fits I’ll point you some resources.

Working out his triggers isn’t particularly helpful (as you’ve found), because some triggers are so subtle you’d never catch them and there’s the potential for his world to become very small. It’s much better for him to learn when he’s being triggers and to manage his reaction - which takes a level of maturity and processing capacity that he doesn’t have yet.

In terms of the specialist provision, is that due to his behaviours, his developmental issues or his learning? Or all of it? What do they do to support his behaviours there? I found with my DD talking to school and us both adopting the same strategies helped - her teachers had some ideas that worked well for some things and I had strategies they used for others, it’s been a patchwork approach that has helped my DD carry some changes from school to home and vice versa.

As far as anxiety provoking physical attacks, that’s hugely stressful for you and ultimately dangerous for him - what help have you had so far (I’m guessing not much). How do you react/respond when he’s physically violent and does it help?

Sorry for all the questions, I’m just trying to think of what might help but I also don’t want to point you in directions you’ve already tried or that haven’t been helpful before.

We'd love to access OT at home but haven't been able to find anyone who does it (he has it at school). Private OTs all seem to do assessments or work in schools. Have you found a way to get this?

You can get it included in the EHCP, there are OTs that do work in the home, especially when it is funded via an EHCP. Sometimes the OTs in SS will do a limited amount of work at home even without it being in the EHCP, so it’s worth asking the school, but obviously this is often during working hours.

More generally in order to make the home safer/better meet DS’s needs you can ask the council for a home OT assessment that can look at aids and adaptations. If you google you LA and OT aids and adaptations it should give you the details of who to contact. Smaller aids and adaptations are generally funded directly, larger ones via DFG.

Your local authority should have access to OT support for home, as part of the disabilities or community care team, as with everything you’ll probably need to argue your case but they will definitely have home based OT assessments available because they’ll need it for assessing adaptations for physical disability, so should be able to do a similar assessment for your son.

Is there the possibility of a multi-agency meeting to pull everything together. Where I am community paediatrics undertook an initial assessment of my DDs needs, they made referrals to everyone from audiology to OT and then followed up with me to make sure things were progressing. I’ve still had to fight at times but having all my DDs health and social care needs coordinated in one place has helped and she’s had access to a fair amount of specialist support.

How's he 11 already? Bloody hell time flies.

You might want to call me a fucking twat after the next suggestion...

<Just hang on while I borrow a full ice hockey goalie kit>

Have you thought about living in two homes...DH and DD, you and Ds. With visitation (swapping kids)

Reasoning: DH is stressed and makes reactions worse.

DD is stressed and makes reactions worse.

You are better at handling Ds. Not having the stress of D's and DD making reactions worse may be better.

DH might be able to give you respite when he is not with Ds full time.

Writing from the perspective of single parenting two autistic kids (not the same I know) (you might remember some of the goose and carrot tales I told)

Fat fingers...sorry. posted too soon.

Right.... Let me have it....

Tell my why I am a complete idiot and why it won't work.

(God, I recognise your absolutely desperate tone, and mine have fewer problems) and yes the support is absolutely shit. And less useful than a chocolate teapot...at least you could eat the chocolate.

Also, he might (crosses fingers, touches wood) learn to regulate himself more in a few years. We are definitely seeing improvement. And then more time together.

It's bloody drastic and proper support should be given...

Tell my why I am a complete idiot and why it won't work.

Honestly? My ex and I separated last year (nothing to do with parenting) and we have a 60/40 split of childcare and in many ways its much easier. I have times when I’m fully “on” but also times I can regroup, my ex and I have an amicable relationship and the kids see lots of us both. Living apart if you can make it work isn’t the worst suggestion I’ve ever heard.

Reading your posts you've clearly done a lot of research and reading of evidence. ADHD and ASD mirror developmental trauma (developmental PTSD) in terms of behavioural presentation, but the underlying triggers/causes differ and therefore what is helpful differs. It's not unusual for trauma to be misdiagnosed as neurodivergence.

Is that something you've looked at as to whether approaching it from a developmental trauma angle might be worthwhile?

For instance, if the reason he wants you to do everything for him is because it makes him feel safe and cared for, then strategies based on "training" him to be independent won't work - because unless that's accompanied by other strategies it leaves him with an unmet need (to feel "safe"/cared for). If that makes any sense.

As to the "support" you're receiving, I agree with you that it's outrageously poor. Services are under-resourced (and under-skilled), which means families like yours are let down.

Also, you mentioned a visit to some horses?

Again, feel free to reject this if it's not helpful, but there is growing research into equine assisted therapies. Even just as simple as learning to care for horses and building a relationship with them can have therapeutic benefits, so it wouldn't necessarily need to be any kind of equine therapy just general husbandry or visits.

Relationships with animals can feel safer and easier than with humans and if there are unmet needs for him in terms of developmental trauma, it might leave him feeling calmer about stepping down from other things (like wanting everything done for him etc).

Just wondering if that's something that's come up in your reading? I don't know if it would be within your resources or ability to access, of course.

Not suggesting it would be any kind of magical solution, just reflecting on your posts and offering a sounding board. Ignore me if it's not helpful.