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.

@cansu we have lots of ideas, but we don't know if we are putting them into practice effectively. That's why we want someone on the ground to tell us what's going wrong. As I say, to me it looks like DH is more reactive than me. But maybe I'm wrong. Maybe we are both a bit reactive but he's less reactive overall and I'm just not seeing it. Maybe we are reacting in the wrong way, but we should be reacting a bit. We have no idea.
This morning's example: DS came downstairs when I was there with DD, and either hit her or pulled her hair the second he stepped off the bottom step. I am not sure which as I didn't see it. I told him to go back up and wait till she was ready to go out. He kicked me. DH got upset about being late (I rarely care about being late but it stresses DH).

I told DH not to worry and I'd stay upstairs with DS while DD got ready. DD and I got ready and were about to go out when DS came down and waved a heavy bowl as if to throw it at me. I told him not to threaten us and he threw scissors at me. I sent him back up again (actually I had to physically escort him that time).

Thing is, I don't know if I was being over-reactive in sending him back upstairs (and should have just ignored him/sent DD outside and passed her her coat and shoes, well, except that DD never listens when we tell her to go out of the room to get out of the way so she would actually have stood downstairs shouting NO NO NO and not either getting ready or getting out of the way 🙄) or if DH was being over-reactive in worrying about being late and telling me NOT to send him back upstairs, and he should have just not said anything.

I really, really don't think a boarding school will do anything other than expose him to bullies (and remove all his academic boosting and activities that we do with him) and decrease his sense of wellbeing which will make him more aggressive. When he was being bullied at school it was definitely bad for his home behaviour. It might be a solution when he's 13 or so and needs a more academic school but a very young 11 who still takes teddies to bed, watches Cbeebies and needs a hug is going to be eaten alive in an SEMH residential school with children who are at school 52 weeks of the year because they have been removed from violent and neglectful homes.

We are just waiting to hear from the disability team about an assessment. We are not confident though that there will actually be anyone who could provide respite, because we have the money to pay for it but can't find anyone.

@drspouse I was you about 18 months ago. Unfortunately it will take time to get help. It took me a while but there are "special magical words" that you need to use with social care so that they understand how bad the situation is. I only got help after I rang the emergency social care line and said that we were in "crisis" and at "immediate risk of family breakdown". In your case I would also use "immediate break down of adoption".
I also went to the GP and self referred to iapt (our local NHS mental health service). In the end my iapt counsellor intervened on my behalf to get us some urgent school holiday respite. We are almost at a level where I feel safe with our respite provision but we still have no overnight care.

In terms of respite we get 3 days a week in school holidays and every other Saturday for 5 hours at a local Sen club and ten hours a week of direct payments. It has taken 6 months to find carers for the direct payments but we now have a bank of 4 people we can use so that we have cover. It means my son can have a social life and we get a break.

In answer to you original question, because of the Tory government who think that the poor and vulnerable should just be able to sort themselves out...

We have both had all the therapy we're entitled to under the local NHS Care trust (I think that will be your IAPT). I think DH is asking if he can be referred again. I will make sure he mentions the magic "breakdown of placement" words. I have however heard horror stories from parents who say they didn't want foster care but that's all they were offered when they got to this situation.

And obviously, yes, but to be frank I don't think there was much better care before the Tories because all the stuff that we are offered is useless, e.g. parenting courses that are sold as a commercial package to LAs and where the only research is conducted by the original sellers of the package. These are all the same things that were offered before the Tories.

Though on the respite issue I think the Tories can be blamed for Brexit and chucking all the carers out of the country/making Little Britain types think they can abuse Eastern European families and get away with it so they all left of their own accord.

I looked up DDP and therapeutic parenting (recommended by PPs) and they are both at the level of fish oils in terms of effectiveness and evidence. I know I'm being just as oppositional as my DS but I really don't think there is much point in spending weeks or months trying to do some kind of therapy which ultimately isn't going to make a difference (and might make things worse).

You are in crisis. None of you are in a place where any sort of therapy or behaviour plan will work. You all need a break so you can recharge and then get yourselves in a place where you feel well enough to start working out what might help.

I signed myself up for a triple p course for parents of kids with disabilities and a week later my son had a catatonic breakdown and completely lost the ability to talk. I don't think I really believed how bad it had got and I was too unwell (mental health stress and anxiety) to be able to see that I couldn't fix it myself.

Everything you look at is going to have various degrees of evidence. The reality is this area (understanding developmental trauma) is a relatively new area of research and a very complex one. As with all psychology it’s very difficult to run randomised controlled trials because you’re working with peoples psyche, which has long lasting effects for better or worse, so ethically it’s tricky. Add in to that the fact that different people respond differently to interventions, have different degrees of trauma, and in complex cases there are often issues around exposure to drugs and alcohol in the womb affecting brain development and you’re not likely to get consistent results across a population of people who have been exposed to developmental trauma.

So, if you’re looking for gold star, works every time interventions, you’re not going to get that. Because people don’t work that way.

Its about developing a tool kit of various approaches and seeing what works in your family situation. So therapeutic parenting isn’t a golden bullet but does give you a framework for interacting with your child, DDP isn’t perfect but has excellent outcomes for children with attachment difficulties.

In your situation this morning, I would have kept your DS with me (or DH), supported him through the morning routine and, when things were calmer used PLACE principles to talk to him about what happened that he did whatever he did to your DD. The other parent can then help your DD work through her morning routine. Yes it takes time, but both your children will demand more of your time because they have complex additional needs.

It’s hard because you constantly need to flex your parenting approach to meet your child’s needs in a way that they can tolerate. What works one day may not the next because your child is in a different place. It means having lots of tricks up your sleeve, and learning through trial and error, it also means reading and training - you might get one or two things from each approach that work for you.

My sense is you feel worn out, and quite stuck which may be where the oppositional stance is coming from. You’ve rejected just about every suggestion made to you, I get it, it’s absolutely exhausting but if nothing changes, nothing changes.

I think our issue is due to decentralised council funding which has led to lower income for councils and has allowed the government to shift blame to the councils when things go wrong. The councils still have a legal requirement to do loads of stuff like guarantee school places and resources for disabled kids but can't access any extra money on top of what they are given.
There is no overnight respite at all for any disabled children in our region and hasn't been since the beginning of COVID and this is not likely to change soon.
We were offered occasional foster care for overnight respite and accepted it but are still waiting for a match. Foster care is a good solution for some families. I wouldn't totally discount it.

In your situation this morning, I would have kept your DS with me (or DH), supported him through the morning routine and, when things were calmer used PLACE principles to talk to him about what happened that he did whatever he did to your DD. The other parent can then help your DD work through her morning routine. Yes it takes time, but both your children will demand more of your time because they have complex additional needs.

Honestly, talking a child with ADHD and no insight through "why he did what he did" is a road to nothing. He has no idea, and the main answer is "because his brain is impulsive and it felt good at the time".
This is very WELL evidenced and I really don't think "why did you do that" is going to go anywhere with DS. You are right that this type of research is hard and in its infancy but there is a huge amount of research with ADHD to show children with the condition don't have insight.

We would generally keep them separate to get them ready, but DS was physically refusing to be separate because it's much more fun and rewarding for him to hurt DD and her to scream, and of course he's impulsive and can't stop himself from doing that, plus we'd told him not to be with her so obviously he MUST be with her and refuse to do what we say. We tried to separate them and he kicked me (see above). And, as I say, often DD will also refuse to be separate (usually refuses by shouting but sometimes by physically pushing herself back into the room where DS is).

My sense is you feel worn out, and quite stuck which may be where the oppositional stance is coming from. You’ve rejected just about every suggestion made to you, I get it, it’s absolutely exhausting but if nothing changes, nothing changes.

I haven't seen anyone suggest anything to me that we haven't tried, but have been offered, except for things that fall under "fish oils". I've seen a lot of suggestions for things we have tried (like asking DS why he does things) that haven't worked and are unlikely ever to work with a child with ADHD.

We are pretty clear on what we think will help, but we aren't getting it.

@Geneticsbunny we have been like this since he was about 3. OK, throwing scissors and knives is new but everything else has been the same.

Nice of you to offer yourself to babysit. How's that going?

*Honestly, talking a child with ADHD and no insight through "why he did what he did" is a road to nothing. He has no idea, and the main answer is "because his brain is impulsive and it felt good at the time".

The conversation isn’t about “why he did what he did” though” there’s no point in asking a traumatised child why they did something, it’s too shaming for them to process. It’s talking through what happened, being curious with the child, sharing your observations, wondering aloud with them, having empathy for that feeling that it’s “more fun”, recognising that the fall out isn’t so much fun etc etc. Asking why is a hiding to nothing and is a reactive response.

I notice you consistently refer to his ADHD, understandably, but where do you see trauma playing a part? There’s lots of overlap in developmental trauma, ADHD, ASD etc because they all relate to neurodevelopment but different approaches work with each condition.

I don't think there is any evidence "developmental trauma" is one thing.
It covers a load of stuff: attachment, FASD, abuse, neglect, drug exposure. And of course genetic history. Some of these are relevant to DS (and the evidence is that the best approaches are the mainly ADHD plus some sensory approaches that we/school take). Some of them aren't.

Maybe when he's older he'll have the insight to talk about his thoughts on his behaviour. Currently it would just escalate him.

(No chance he'd recognise that hitting DD led to him being taken back upstairs. He is 100% sure that's just us being mean and stopping his fun. DD made him hit her, also).

The problem is, he's going to get bigger and stronger and strangling is a massive concern OP. There may come a point where you just won't be able to keep your daughter safe especially now there is scissors and knives being brought into it.

The only approach I've found with SS for any kind of need is the magic words, as said in a PP and a pulling up the drawbridge approach. They either help or he's their issue and responsibility to deal with as you're not doing it anymore.

It's shit and takes nerves of steel but he needs the right kind of support, as your daughter does.

Developmental trauma does encompass a range of issues, but a good understanding of the complexities of developmental trauma helps you look at a range of interventions designed to support neurodevelopment. By focussing purely on interventions for ADHD you potentially miss other stuff.

Talking about his behaviour lessens core shame, builds connection with you, affirms him as a person of worth despite his behaviour, helps to build connection between actions and outcomes, builds the neuro connections necessary for reflection, all depending on how you do it of course. PLACE principles give you a framework to change your communication in a way he’s more able to tolerate (I agree if you try to discuss in a “why did you do that, look what you’ve done, you’ve hurt your sister” kind of way he’s not going to be able to tolerate that, leading to escalation - been there, done that).

My DD11 has similar issues with lack of insight and impulsivity, she’s being assessed for ASD/ADHD, developmental trauma is a known for her. With 5 years of being as consistent as it’s possible to be as a human being, and long term therapy involving both of us she’s showing signs of insight, will spontaneously apologise for her behaviour (after taking some time out to cool down and reflect), can recognise the impact of her behaviour on others. She can’t yet control the impulse to lash out, but can see in retrospect the impact that it’s had.

She started out with no insight whatsoever, no capacity for reflection and no connection between her behaviour and other people’s reaction to her. It’s been long and hard, and I’ve not always got it right by any means but consistency in building our relationship (as opposed to addressing behaviours) has made a huge difference. She’s calmer, able to think things through albeit after the fact, and able to speak about how she’s feeling. She started out with no language for feelings at all.

Initially she struggled to engage in therapy, her therapist worked hard to build a relationship with her, taking small steps therapeutically, she still needs to be redirected throughout her sessions - her attention span is very scattered - but the time, expertise and patience of the therapist is proving helpful. Because the type of therapy involves working with both of us I can see what helps and what doesn’t and recreate that at home, the therapist also offers feedback on my interactions with my DD, which is invaluable and also helps me devise strategies for challenges at home.

This is long, long term work but if I’d waited until my DD was steady enough to engage in therapy, or hoped she’d mature to a point where she developed insight, or dismissed everything that wasn’t RCT evidenced, I doubt she’d be doing as well as she is. There are still lots of challenges but life is much better and she’s coping with all the transition that come with being 11.

What happens if you do find someone to follow you at home and tell you how to deal with your son and that doesn’t work? Because what works one day in one situation tends not to work the next? What does an intervention “working” mean to you?

I came to talk/ask about The Explosive Child and the CPS approach.

I read the books (I have read both The Explosive Child and Raising Human Beings) and I have listened to countless interviews with Ross Greene and many episodes of his podcast.

The theory/method makes instinctive sense to me, in a way that most parenting advice, especially of the sticker chart and consequences variety, does not.

Similarly what Mona Delahooke is saying when she talks about the difference between misbehaviour as a choice vs a nervous system response (fight/flight).

The thing that I DO like about the Ross Greene approach is that you are meant to make a list and prioritise it and then work on each problem in turn. This seems much better and more proactive to me than lots of the "Be kind, be curious" type approaches. Because yes, I can recognise that certain reactions are an anxiety response but what am I supposed to DO with that information, except for "co-regulate" - what, endlessly? When my child is 30 do I need to be there coregulating them so that they don't get fired or divorced? I think the idea is that if you co-regulate enough they learn to regulate themselves.

However, I have no idea how you find a professional to work through the approach with you, it seems impossible to put in place at home - I do bits of it and it sometimes helps but I can't get it perfectly right. And DC don't have such severe issues that I feel like a personalised professional is worth it anyway. So I joined the facebook group, often recommended highly, "The B Team". And it makes me feel like the approach is even more impossible. I keep trying to read more because often I can get behind a system once I understand how it's supposed to work, but this one is so incredibly complicated and yes, there is a lot of tolerance of sitting around in a blanket kind of behaviour and I'm wondering if it's even constructive. The mods seem to respond to everyone with gigantic walls of text and the whole thing is exhausting and I feel like I've got to get this approach absolutely perfect otherwise it won't work at all, and one of the ways that it has to be perfect is that we have to tolerate all issues which are not the current top one on the list. There are frequent anxiety-inducing approaches about how you might be doing "accidental plan A" which is obviously a complete no and you might as well just not bother doing any of it at all. I know LOGICALLY that no method could ever be so ridiculously rigid and black and white, but it still bothers me.

I have a friend who is a teacher and she made a throwaway comment about training days which wax lyrical about some supposed new wonder technique, which sounds fantastic in training but in reality ends up being totally useless or possibly even counterproductive, because teachers do not have the time, energy, expertise, experience or guidance to do it perfectly. And I've been thinking about that ever since because is that what is happening with this group/method?

I'm reading a different book at the moment as well. I came across a programme called "Who's In Charge" mentioned in a fostering memoir and it's apparently a programme for children who have challenging behaviour, particularly when there is violence towards parents. The person who invented the programme has been a therapist working with families experiencing child-to-parent violence for years and the book is kind of almost like the Lundy Bancroft one which I found life changing and fascinating from an understanding DV/relationship abuse angle. Anyway. It's impossibly long and needs editing badly - I'm a fast reader but kindle reckons it's about ten hours for me and I'm only around 30% of the way through it, but the gist seems to be that the author blames a combination of things - partially changes in society that centre children's needs above adults, partially parents being encouraged to do what he calls "indulgent parenting", and partially the effects of witnessing DV. This all sounds like a familiar empty story and I would have given up on it if it was just boiled down to that, but it seems that it's much more nuanced. I can't in good conscience recommend it fully without having finished it, but it's certainly interesting and if you have tried everything it might be worth looking at.

Oh and then there is this anxiety specialist - Lynn Lyons. I've just listened to a new podcast she was on yesterday which had some brilliant gems (but again I'm wondering now if I'm even on the right planet with my parenting approach in general) - it's the latest one here BTW - https://www.adhdessentials.com/podcasts/

Anyway, her big thing is about how the approach for other types of condition/neurodiversity, to make accommodations, expect less, meet a child where they are, is completely counterproductive for anxiety because anxiety is a condition that manifests in a "need" for control and for certainty. So if you try to manage this by having more control and gaining more certainty, what actually happens is you validate that need and make it seem/feel more legitimate and even more necessary. And the problem is that there are many situations in life that we cannot control, or we should not control (because controlling other people for example is often harmful to the person) or it is very limiting/unhealthy to us (for instance a person who controls their environment by becoming agoraphobic, or limits their own diet). And many situations where certainty is not possible, or again is not desirable because it is achieved through a means of control. So actually she argues that to treat anxiety it is important to become comfortable with a lack of control and a lack of certainty.

And, another thing that made me think a lot - I listen to a lot of podcasts, read books, watch videos, do online courses, all to discover some kind of secret of parenting but actually, learning everything doesn't have much of an effect, we need goals and plans essentially. So understanding disorders and the root cause of behaviours etc is all well and good, but it won't do anything unless you can translate that kind of understanding into a goal-directed plan, and that is the kind of thing it would be very useful to have directed support with.

@BertieBotts i think the problem with Facebook groups aligned to a particular parenting approach is that people on them tend to be a bit evangelical about their particular approach and so don’t tolerate any deviance from their take on that model. I find that unhelpful because no one approach will suit every child, and sometimes what works one day doesn’t work the next.

I like the idea of having a list of priorities and tackling them one at a time, but with the understanding that those priorities might change - you need to parent the child you have, not the theoretical one the book/programme was written for.

I think children need consistency, predictability and routine to give a sense of control - they know what will happen when, how someone will respond in X situation. This is where I part company with therapeutic parenting, for example, because “natural consequences” aren’t consistent or predictable enough for my DD. She needs to know that every time she does X, Y will happen because she can’t understand why, for example, if she is rude to me I’ll respond in one way, but if she’s rude in school they’ll respond differently and if she’s rude to someone in a shop she’ll get a different response again. Her insight isn’t developed enough to adapt to the situational impact of the same behaviour in different places. So I do follow a lot of the principles, but not natural consequences.

Theres no one approach or process that will work all of the time for every child, mix and match.

@BertieBotts that's EXACTLY how the B Team group comes across to me. And all very much "how can I do everything for my child and not collapse". As I say the questioning method IS helpful but we do start with the assumption that we need to move together towards doing something, not accepting it won't be done.
I also looked up the approach in terms of research studies and again it's all by the originator.

The approach you mention for anxiety based difficulties is really interesting as that's what I've been finding in reading about both anxiety and ADHD (the main person in the ADHD area is the ADHD Dude). And we know that MANY of his aggressive responses are fight (plus flight which is less difficult for us but also needs addressing). I'll look up that link as well.

@gamerchick we are aware he's getting bigger. My point was we've been at crisis point for about 8 years.

I've noticed you are feeling quite critical of the evidence base for a lot of the interventions, unsuprisingly I would say. The replicability crisis in psychology, psychotherapy AND psychiatric medication or treatment is huge. The reality is humans are incredibly complex and there are genetics, trauma, neurodiversity and many many other factors which make up challenging behaviour and the complexity of needs and our own prefences make any standardised approach by its nature not suitable for everyone. I would suggest your starting point is to find a therapeutic intervention that you agree with the principles of personally, whether thats person centred, attachment-based, interpersonal etc, and a therapist that you, your husband and child can get along with and respect, which might mean having separate therapists.

The truism for therapy is it is the quality of the relationship between client and patient that makes a difference and that actually has been evidenced time and again in the research. If you can afford your own private therapy I'd say that's the place to start as you'll have more flexibility to pick the right one for you. Good luck.

Happily I do have a lovely therapist for myself. I think DH is in a state where he doesn't think anything at all (for him) will help (because nothing has yet, and he has done what was offered by the GP and his work "employee support" and has been to parent support groups run by the LA and by post-adoption support) so as far as he can see, why would something similar help him?

Like I say, we also know what we want to try in terms of DS, but nobody seems to be able to offer it.

I don't have any answers but feel for you. It's a nightmare trying to get support - DS put me in A&E twice last year, police have been called out, by us and others who overheard his meltdown, CAMHS won't do anything as they say it's ND, efficient means he's just been left to cope with massive anxiety.

DH and I tried to get help for ourselves and were told to try mindfulness.

I’ve only read the first page, sorry if I’m repeating anyone!

Sadly the behaviour is quite normal for some children with ASD/ADHD, and support is like a mythical beast - it exists on paper but not in real life!

I imagine that being adopted and his background will have an impact, but that’s not really something I know about.

The behaviour though, I know how you feel as we had years of this with ds (now 17, ASD/PDA).

The PDA society has some excellent resources and strategies, which are effective even if PDA isn’t in the mix. A lot of it is down to changing your language to take away demands away, and teaching your child to negotiate.

There’s a book called the Explosive Child by Ross Greene which is excellent for this, and a sequel called Lost in School which I found very useful as ds got older.

I also recommend taking a time out - back off, try to avoid situations that typically trigger a reaction, but at the same time watch carefully as there’ll be signs (sometimes very subtle) that you can learn to spot, and then you can learn how to de-escalate it before the tipping point. (Eg ds would go red under his eyes, quick intervention with sensory activities could calm him down).

If there are situations that predictably trigger him, you can use steps to avoid them - pick a situation, think of other ways to handle it and try them, trial and error (pda strategies are good for this).

Keeping calm is vital, but feels virtually impossible when you can’t get a break and constantly have to deal with this. Can you and dh take turns in managing things so you both get some time to wind down?
In terms of day to day and keeping your cool, I found it helpful to pretend I was being filmed - sounds silly, but it really worked.

We also had laminated lists for ds with things he absolutely had to do, everything else was negotiable using PDA/explosive child techniques.

It is hard work, and support is scarce. The criteria for respite is ridiculously high (ds was very violent for 5-6 years and no one would even teach us how to safely restrain him, let alone de-escalate things. It all came from me - learning and trying different strategies until we found ones that helped.

Sorry though. I wish there was a magic wand to make everything easier 💐

There’s a crisis in social care, but children’s services can support funding a respite provider. They won’t unless forced but they can e.g. fund at a higher rate (this works especially well with agencies as money talks) or 2:1 to attract someone or via foster carers (this is how DS1’s respite carers were found) or if DS’s school offers residential provision he could be funded 1 night a week.

@EilonwyWithRedGoldHair if DS has an EHCP provision can be included in there so if CAMHS can’t or won’t provide it the LA must provide independent provision. If he doesn’t have an EHCP you should request an EHCNA.