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Breaking the Silence on Violent Challenging Behaviour: a conference review

Last week I brought you the reflections of Dr Girish Vaidya, who had attended the Violent Challenging Behaviour conference, organised by Yvonne Newbold. The post has attracted some interesting discussion. This week Yvonne has kindly allowed me to repost her own reflections and review of the conference.

Yvonne begins by recounting the hopes of those attending, and ends with her own dream that this, by breaking the silence, will be just the start. “Part of achieving this level of widespread acceptance must include training for all frontline professionals about the issue, and why it happens and how they can help. Ideally, I’d like to see a future where professionals and parents work together in a spirit collaborative respect to find individual support and solutions that work for each child.” There are some salutary lessons for professionals in her post. Please do read it and understand that this is the real experience of many parents, while we always acknowledge that there are also informed, compassionate practitioners already out there who do truly “get it”.

What did parents want?

Just before the recent conference about violent challenging behaviour (VCB) in special needs children, I emailed the parents who were due to attend to ask them what they most wanted from the day itself. These are, without exception, parents who are being pushed to their very limits, coping with frightening and dangerous situations every day, and dealing with painful and traumatic injuries being inflicted on a regular basis by the children they love more than anything else in the world. Reading their replies was humbling, particularly when I realised that most of them wanted, more than anything else, was the chance to simply spend time with other people in the same situation so that they would be believed, understood, accepted and not judged for the first time ever.

To be understood and accepted

That’s what we all want, deep down, to be with people who inherently understand us and to feel validated and valued for who we are and what we have experienced. It’s really not a lot to ask for, especially considering how extremely difficult life is for this group of parents. Yet almost without exception, they were able to recall times when they had tried to explain their circumstances to others, and they were made to feel judged, blamed, belittled and shamefully inadequate as parents.

Loneliness

Loneliness was another issue that many parents talked about in their replies. Loneliness doesn’t just imply being physically alone, on the contrary some of the parents were surrounded by people in their everyday lives. However, nobody in their circle truly understood and believed in them and in their child and they were lonely in the way that only other people’s attitudes can make someone feel entirely alone and isolated.

To help our children

The second most common wish for the day was that they were hoping to learn new strategies and ideas that they could use to help their children cope better with their frustrations, and that might be able to reduce the level of violence their children are using as a way of communicating. Linked to this were several comments about wanting to understand why these behaviours occur, and how to prevent them or to de-escalate them when they happen. They wanted information, support, signposting and advice.

Information – it’s not a lot to ask for

Again, it’s not a lot to ask. Their children have a diagnosed disability such as a learning disability or autism, and this behaviour is a well-documented potential symptom of these diagnoses. There is a lot of information about how these behaviours can be more successfully managed or even re-directed, yet finding that information and piecing it together can be nigh on impossible. There are specialist behavioural support teams who can work with families to help their children. Yet the vast majority of parents can’t access these teams easily, and even those who do manage to get specialist support often have had to wait years to be taken seriously enough for a referral to be made.

Avoiding injuries

Avoiding injuries was another big issue, and that included how to prevent the child from self-harming as well as protecting their brothers and sisters from injury during these behaviour episodes.

Practical tips

When a child has developed patterns of challenging behaviour than can be violent, the dynamics of the family shift so that it can feel as though the child themselves is in control of the household with everyone else walking on eggshells doing all that they can to keep them happy and settled. Parents recognise this, and wanted practical tips on how to re-establish firm boundaries in these sorts of situations, and to take back the control of the family.

Fear of the future

There was another theme running strongly through the replies from parents, the fear of the future. What happens when their children get bigger and stronger if no one has helped them to re-direct their violent behaviour? Parents are desperate to know what they can do now to help their children reach their full potential and to find different ways to channel their frustrations. The biggest fear among parents is that their children, once they reach adulthood, may end up in prison or locked away in a long-stay mental health unit.

Professional Help

How to access professional help was another huge issue. Help that should be immediately available to these families, some of the most vulnerable in the country. Instead, shockingly, one parent after another recounted their experiences of being disbelieved, blamed, dismissed and abandoned by the very services supposedly put in place to support families most in need.

Lack of training among Professionals

Staff in schools, in Local Authorities, Social Services and Health Care Centres have no training in violent challenging behaviour(*), so they have no understanding that it’s an issue at all. When a parent asks for help, more often than not it is so far outside a staff member’s own lived experience that they simply don’t know what to do, how to react, or how to help.

Parent Blaming

Instead, many families are blamed for their child’s behaviour, and it is very common that parents end up facing child protection proceedings instead of getting the help for their child that is so badly needed.

There were several parents at the conference whose children, sometimes including the brothers and sisters, had been forcibly removed from their home and placed in the care system. All because the professionals involved with the families had wrongly made an assumption that the parents were somehow to blame for their child’s special-needs driven behaviour patterns.

Conference Day – like meeting old friends

Bright and early on our Conference Saturday, parents started arriving at the venue. We’d exchanged so many emails by that stage that they felt like old friends, and the welcoming hugs I had were amazing. The parents were pretty amazing too. They have been knocked back so many times, they have so many odds stacked against them, yet they were strong, resilient, funny, warm, brave and compassionate men and women, finding the strength to carry on and fight the system every day, then getting up the following morning to do it all over again.

Our Awesome Speakers

Our speakers were pretty awesome too. Kath Evans, Hazel Watson and Oliver Shanley from NHS England, Jim Blair from Great Ormond Street Hospital, Cecilia Anim, who is the President of the Royal College of Nursing, Mark Brown who is a leading Autism Specialist, Mary Aspinall-Miles who is a Barrister, Dr Girish Vaidya who came all the way from Sheffield where he is a Consultant Child and Adolescent Psychiatrist who works with particularly troubled young people, and Malcolm Cooper, a Stress-Management and Relaxation Specialist.

Jaydn – a real star who has turned his behaviour around

We also had a very special contribution from Jaydn, a 13-year-old friend of mine who presented remotely about his own experiences as a child with special needs who used to frequently use violence towards his mum to express his own distress. Jaydn is one of the lucky ones. He has had intensive specialist help to move him on from these behaviours, and he is now facing a much more optimistic future than anyone would have dared hope for a couple of years ago.

Thanks …

I had the best team ever around me supporting everyone on the day. Dan, Linda, Sian, Rachel, Francesca, Adam, Malcolm and Geraldine. Every one of them from families who have also coped with the same sorts of issues that the day was all about. Grainne and Nikki too – although they couldn’t be there on the day, kept me going in the weeks beforehand with their common-sense advice and thoughtful suggestions. Gareth Presch, the Founder of The World Health Innovation Summit (WHIS) came all the way from Carlisle to join us too. His support is invaluable, and working with communities of people to improve health and well-being is exactly what WHIS is all about. I would also like to thank Gill Phillips of Whose Shoes and NHS England for their generous sponsorship which made the day possible and go as smoothly as it did. Gill believed in me from the moment I ran the idea past her, and immediately offered to help. I’d also like to thank Ruth Evans of Patient Experience Network, who partnered with me and who was on the end of the phone throughout the planning with lots of ideas and advice. Thanks too to Graham at the Garden Catering Company who provided a wonderful lunch with a very thoughtful discount, and to Sheila, who manages The St James The Less Centre in Pimlico and who worked really hard in the background to help to make the day a success.

Breaking the silence

It was only a day, there were only 60 families represented in the room, and the scale of the problem is so vast that we couldn’t hope to solve everything in seven short hours. However, we made a very good start.

It was a simply wonderful day, full of hope, kindness and acceptance. People talked, people listened, parents were heard, validated, believed and embraced. There were an awful lot of hugs too! (At the bottom of Yvonne’s original post you can see what people said themselves about the day.)

Only the start

This is only the beginning. We have to capture the energy that was in the room that day and build on it until this devastatingly tragic issue is given the focus that it needs. The first thing we have to do is to break the silence, and make it OK to talk about how our vulnerable children lash out, with an expectation that other people will extend compassion instead of judgement.

Training

Part of achieving this level of widespread acceptance must include training for all frontline professionals about the issue, and why it happens and how they can help. Ideally, I’d like to see a future where professionals and parents work together in a spirit collaborative respect to find individual support and solutions that work for each child.

Building a resource hub

Then there is the issue of making all the information on this easily available and accessible for parents. I’m going to make a start on doing that – collecting what I can find, putting links to it on my website, and creating new material to fill any gaps.

What I want to see

I want a future where every parent is told that violent challenging behaviour may develop in their child later on at the same time they are told about their child’s initial diagnosis. I’d like them to be given basic information about what they can do to minimise any distress in their child before such behaviours develop. I’d love them to have a good understanding of what to do if these behaviours start, and that there will be a pathway of good, strong, compassionate care and support to help their child manage their emotions in a more positive way before the patterns have a chance to take hold and become embedded.

Yes, it may cost money, but nowhere near as much money as doing nothing costs, which leads to thousands of children heading towards prison or mental health units for years upon years.

Toby

Why is this so important to me? Because for 10 years we were one of these families too. Toby, my adorable, hilarious, sociable, warm and kind son who is also non-verbal, autistic and with a severe learning disability had frighteningly violent episodes at home. He, just like Jaydn, got the help he so badly needed, and we have all learnt together how to manage his anxieties, sensory issues, communication difficulties and transition issues in a way that he finds life much easier to cope with now.

All Behaviour is a form of Communication

All behaviour is a form of communication. When a child behaves in a certain way, they are trying to tell us something. When a society behaves in a certain way, it also communicates very strongly too. Together, we can choose to behave with kindness and acceptance, or judgement and blame in the way we either support these families or continue to shun them. What happens next is up to all of us.

I’m developing half day Workshops and full-day training on Violent Challenging Behavior in Special Needs Children for professionals and for parents. Please email me for more information – yvonne@yvonnenewbold.com

Yvonne Newbold is:

  • the WHIS Ambassador for Learning Disability, Autism and Families
  • The Patient Experience Network National Award for Outstanding Contribution in Patient Experience 2016
  • LDT Learning Disability Champion 2015
  • HSJ Award – Top 50 Inspirational Women in Healthcare 2014
  • Author of “The Special Parent’s Handbook”, an Amazon #1 Best Seller

 

* I understand that there is training available on working with challenging and violent behaviour but it is possible that not all schools or staff are able to access it. 

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Child on Parent Violence: Beginning of a paradigm shift?

I am grateful to Dr Girish Vaidya, Clinical Director at Sheffield Children’s NHS Foundation Trust, for allowing me to repost this recent blog on his experience of discussing CPV with colleagues.

Originally published on April 8, 2017

Al Coates and Dr Wendy Thorley’s 3 reports (the last of which is linked here) into an online research project provided fascinating reading and prompted me to present the subject in a CPD seminar for fellow psychiatrists in Sheffield’s Child and Adolescent Mental Health Service (CAMHS). I was particularly keen to share the findings of the reports, my fellow professionals’ experience of this issue and how they managed to address it.

It was heartening to hear that all my colleagues were aware of the issue. When I invited them to think about the impact on the families experiencing, their guesswork was entirely in line with the findings from Al Coates and Dr Thorley’s investigation. What this meant was that once seized of the behaviour as a problem, professionals were able to consider its consequences to the children, families and wider society.

There were also some examples that colleagues offered. One Learning Disability CAMHS Consultant recalled how she was horrified when confronted with a suggestion from social services that a child – who had earlier required 5 people to restrain him – had been advised to be returned home to his frail mother. Quite a few chipped with their experience of Sheffield Children’s Social Services and expressed their pleasant surprise at the speed of response and collaborative nature of working. It was also acknowledged, much in line with what Mary Aspinall – Miles said at a recent conference, that “parents should consider carefully before calling the police”.

So, what should parents (and professionals) do when dealing with a difficult subject like Child on Parent Violence?

My fellow psychiatrists were keen that professionals and parents work out a ‘pre-emptive emergency plan’ so that parents are not left in a dilemma about what they should do. A couple of colleagues were passionate about treating CPV on the same level of child abuse. They were also aware of the Sheffield Domestic Abuse Coordination Team’s MARAC (Multi Agency Risk Assessment Conference). Some suggested that parents should be asked about their ability to cope vs. their ability to manage their life.

Reassuringly, there was a near universal desire to have a ‘rating scale’ on the lines of various risk rating scales that professionals use, to have a common language about CPV. (I am not aware if there is any such scale and if there is, would be keen to know about it). If there isn’t a scale, my colleagues are keen to work with anyone to help develop one.

Writing this, I am reminded of an incident many years ago when one family’s holiday came in for professional scrutiny. The child had been inflicting severe violence on his parents which had destroyed many a family holiday for the rest of the family. Parents decided that they wanted to do something which didn’t wreck their other children’s holiday. They planned to take separate holidays – father with the other children and mother with the lad. They would swap the following year. It was deemed to be a demonstration of family pathology that they didn’t manage to have a family holiday without a fight. I felt that was being a bit too harsh since the family were trying to find a way out of a very challenging situation not fully appreciated by professionals. What do you think? Would you agree with Hannah Meadows’ assertion that self-care is an intelligent response to dealing with long term stress? Or would you rather that the family learn to live with the CPV on holiday?

What next?

Feedback from the CPD seminar suggested that this is just the beginning of our journey. Professionals want to know more, need to know more so that they can support more. Everyone agreed that it was a less discussed issue in clinical discussions and many emphasised that they would be on the lookout for CPV in their clinical practice in the future.

Let us continue the conversation…………………………..

If you are keen to collaborate on scientifically researching this challenge, we – as an organisation and I as a Clinical Director – would be keen to work with you.

 You will find the original here.

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Child on Parent Violence – DfE Expert Advisory Group

With permission, I am reblogging this post by Al Coates, from his site: Misadventures of an Adoptive Dad. (Wednesday March 29th 2017). Al is a member of the DfE Advisory Group on fostering and adoption, and has been instrumental in bringing the issue of child to parent violence to the attention of the Department. 

It was the quarterly Department for Education’s Expert Advisory Group on Adoption Support. Today was the usual updates on this and that and a few larger issues addressed such as the working out of the role of the Virtual School Heads. We focused  to how the Adoption Support Fund was progressing, of course there are challenges but to date nearly 18,000 children had been helped and that the fair access limit remained above the average cost of the vast majority of applications. No help if you’re over with match funding and a difficult issue for some but 80 families have been match funded, which is more than I’d envisaged.
We had a discussion around the incoming legislation of the Virtual School Heads with NAVSH represented in the room they gave a good account of how they envisaged it playing on the ground. It is was a good discussion and there’s room for encouragement and optimism. Of course there are uncertainties as we move into new responsibilities and grey areas but without doubt we are heading in the right direction, it would have been nice to have heard Gareth Marr’s thoughts as we discussed the role.
The final item on the agenda was Child on Parent Violence, I’d asked for it to be there.

Drawing tougher all the findings from the Survey that I’d undertaken and the subsequent findings that Dr Wendy Thorley had made sense of in the first and second CPV reports that laid it all out. It’s too much go through verbatim and a text version of a 45 minute presentation is too much to bear so here we go in eight words.

Taboo (fear of response, isolation, criminalisation, ignorance, stigma, victim blaming)
Paradigms (different professionals view it very differently
Definitions (the trouble with them)
Causes (complicated)
Prevalence (lots, 30% ish)
Impacts (massive)
Responses (shocking)
Actions

It was well received, they’re a polite bunch, but I do think the collective minds and organisations in the room took the message to heart.

Child on Parent Violence is a ‘thing.*

This is a thing that we need to act on, a complicated, ugly, painful and prickly thing that needs to be grasped. As one member noted, not a can of worms but a bucket of worms.

Actions is the interesting bit, so what do we do next?

That’s the question, what do we do with this ‘thing’, first we call it a thing and we start to raise awareness and we start to consider if this as big as we suspect and believe that we make it a part of Social Workers Continual Professional Development.
We consider how we prepare adopters to let them know it’s a ‘thing’ and it’s ok to say it’s happening.
We liaise with safeguarding and tell them about this ‘thing’.
We develop out knowledge of interventions and what works in a real world situation.
The DfE are going to talk to the Chief Social Worker about their views and knowledge.

Today felt like a start line not and maybe a consideration of what may be the first steps in removing the taboo and developing the culture that makes it ok to ask for help and ok to say you’re not ok.

I apologise that this is all a bit vague, it’s late and having thought hard about this for a long long time and lived to varying degrees with it and in it. I feel very sleepy all of a sudden.

On another note I’m thinking of getting the presentation, with other stuff,  out to a wider audience and there’s even talk of putting on a free event for whoever’s interested and recording it, podcasting and you tubing it. I’m pondering that thought so if that’s of interest let me know.

All in all a good day.

*Speaking to a group of Social Workers last week  a senior practitioner said “We knew that this happened but we didn’t realise it was a ‘thing’.”

 

If you have found this of interest then please do check out other posts on Al’s site. 

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LOL – Not!

Knowing my interest in parent abuse, people regularly inform me of clips or articles they have come across. I am often impressed by the thoughtfulness and awareness of some YouTube videos, but I also find myself frustrated and despairing at whole swathes of content. Where do I start?!

Today’s offering is not untypical. A Mum films her son and partner “fighting” for laughs. I hesitate to call it wrestling. I grew up with fond memories of wrestling my dad and brothers on the floor, but it was more about tickling and wriggling than the punches being thrown here. What messages are being given in these videos about the acceptability of violence – hitting your parents as a leisure activity! The blogosphere is similarly populated by parents amused by the “abusive” actions of toddlers (or occasionally disabled children); and Facebook is a rich mine of photos of teens with their Mum in a headlock. We have a community that accepts the notion of parent abuse – but as a joke. Continue reading

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