One of the saddest secrets of our time
Every day, in a house not far from where you live, there is a family who is keeping one of the saddest secrets that there is. Every day, in thousands of homes everywhere, there are children who have a learning disability, or autism, or ADHD or something very similar, who have episodes of explosive emotional overload where they physically attack their family, often focussing on their own mother. These children are often mostly wonderful for the vast majority of the time, but when something triggers them, the level of violence they are capable of is frightening in the extreme.
Shame, Fear of Judgement and Parental Loyalty
It’s barely talked about, so very few people know just how widespread this sort of behaviour is, and parents in the middle of these sorts of situations often think that they are the only ones. They can’t talk about it because they are so ashamed, and because they know that people will judge them. Often they judge themselves, believing that somehow they have failed dismally at being parents. They also can’t talk about it out of a sense of real loyalty towards their otherwise adorable child. Let’s face it, society isn’t always kind to children who have any form of difference or disability at the best of times, parents don’t want to hand other people an excuse to think even less of the child they love with their whole being.
There is no help available for most families
Sometimes the violence can go on for several years, there are often fairly significant injuries too. Broken bones are relatively common in these families, as are human bites that draw blood, serious bruises, cuts and worse. Often families do confide in someone, a professional that they assume will be able to help and know what to do. Perhaps they talk to their child’s teacher or head-teacher, perhaps to a doctor or nurse or another health professional who is involved with their child, sometimes they contact social services desperate for help. Most times though, the help simply isn’t there.
Asking for Help can Make things Worse
Worse than that, because it’s so rarely talked about, nobody really understands the scale of the problem. When things are hidden away, services aren’t funded and developed that may be able to address the issues properly. The teachers, the healthcare professionals and the social workers are not trained in how or why childhood violence can happen at home, so when a parent asks for help they, too, are often completely out of their depth and with very little understanding of the wider issues and contexts.
Sometimes, instead of helping a family, telling a trusted professional and asking for help can make an already very difficult situation far worse. Sometimes, because a professional hasn’t had any training and can’t be expected to understand the root causes or to know just how very common this behaviour is in children, they jump to the wrong conclusions and blame the parents for their child’s violence. Sometimes, there are so many misunderstandings and wrongful accusations that the children, or their brothers and sisters, are removed from their parent’s care altogether. All because we don’t talk about it enough.
Child Protection Fears
Actually, it’s not only because we simply don’t talk about it enough. There is another factor at play here too. Over the past four or five years there have been some very high-profile and horrific child abuse cases which have culminated in a child’s death. The reviews which follow them often find opportunities that were missed which, had they been picked up and acted upon, might have prevented the tragic sequences of events.
In response, there has rightfully been an emphasis on safeguarding training, and the focus of those who work with children is to be watchful and alert to any nuance which may indicate a serious child protection situation. However, for parents of children with disabilities, who inevitably are more often in contact with child specialist practitioners, it can feel as though we are under such intense scrutiny that they are actively trying to catch us out as abusive parents.
Undoubtedly, there are appalling parents who do terrible things to their children but, generally speaking, they are unlikely to be the ones actively asking for help. What might help enormously would be an open mind, a little bit of trust and kindness, and an acknowledgement that the vast majority of parents only want the very best for their child.
Specialist Services hard to access
Specialist services to support families coping with childhood violence do exist, but there are nowhere near enough of them to be able to help more than a tiny fraction of the families that need help with their children’s behaviour. Where they do exist, and where a child’s behaviour is assessed as being severe enough to warrant a referral, often there are so many hoops to jump through, so many criteria boxes to tick, and so many obstacles to allocating funding for a particular child that it can take years to get that child in front of someone who might be able to help.
Why this matters to me
I know this from first-hand experience. My son, Toby, was one of these children, and it took more than five long years until we were allocated a specialist who could work with all of us to help to turn Toby’s behaviour around. In those five years, not only does the behaviour continue to deteriorate, but the child becomes so used to and more practised in these patterns of behaviour that they become so entrenched that they need much more long-term, highly skilled and very intensive intervention to unravel them and help the child adapt to more socially acceptable patterns of behaviour.
Toby has a lot of challenges in his life, and generally he copes remarkably well with all of them. He was born with life-threatening and complex medical conditions, so serious that he was not expected to survive beyond very early childhood. He spent most of his first six years in hospital, critically ill and hovering on the brink of life and death. I always stayed with him as a resident parent, barely leaving his side. I lost count of the number of crises we had where he tenaciously clung on to life by the flimsiest of threads. I stopped counting how often it was suggested that we call the extended family members who matter the most to his bedside in case he wasn’t still alive in the morning. He did make it. He’ll be 23 next month, and I must be one of the proudest mothers alive.
However, he also has multiple disabilities which include being unable to talk, an intellectual impairment which means he has the cognitive equivalence of an 18-month-old toddler, poor muscle tone and severe autism. Most of the time he is delightful, funny, mischievous, affectionate, gregarious and absolutely great fun, but sometimes, particularly during those years between 10 and 20, he would become uncontrollably aggressive with a strength and a determination which belied his severe disabilities.
The first time Toby hit me I was so shocked it completely floored me. I was also incredibly hurt, it felt like the ultimate betrayal after all those years of willing him to survive when he was so ill in hospital. I didn’t know then that it was going to happen almost every single day for more than the next ten years. I also had no idea as to why this was happening, and even less understanding of why it made things worse whenever I did all the things that parents are supposed to do when their children are naughty.
I wish I’d known then what I know now, maybe things could have been so different. Back then, we didn’t even know that Toby had autism.
I felt I was a failure as a parent
I often talk about Toby at conferences, and I write a lot about him too, he has quite a following on social media. However, until very recently, I had never spoken publicly in any real detail about those awful years of violent episodes. Why? Because I too was ashamed, because I too felt that I had somehow failed as a parent, and because overwhelmingly and most importantly, I want people to see the very best in Toby, because he is so much more than those difficult times and he has such a lot to contribute in the world. I didn’t want people to think any the worst of him.
BBC Radio 4’s Woman’s Hour
Two weeks ago, I was a guest on BBC Radio 4’s Woman’s hour, to discuss this very issue – children who are violent towards their parents, and the stigma surrounding it. I had no intention beforehand of going into any detail about our own family experience of aggressive behaviour, but in fact those days are now over for Toby. With the right support and the right help and a lot of time and work from him and from everyone around him, it’s nearly 18 months since Toby hit anyone at all. I understand it all so much better now, and I am inordinately proud of the way he has completely turned his behaviour around. Suddenly in the charged atmosphere of live radio broadcasting, I told our story. It was the right thing to do, and I couldn’t continue to collude in the silence of shame and stigma which ensures that families carry this burden alone and unsupported. If you’d like to listen to what we talked about, here’s the link.
Hundreds of families sharing their stories with me
Since I came off air, I’ve lost count of the number of parents who have been in contact, so relieved that it’s been talked about, and wanting to share their story with me. For some of them, it was the first time they’d told anyone. For others, they had tried to get help through the proper channels and things had gone horribly wrong, with professionals jumping to the wrong conclusions and accusing the parents of abusing their own children. I’ve spoken to parents who have had their children taken away because no one believed what was really happening. I’ve been in touch with many who have had labels of attachment disorder given to their children by professionals who are not trained in how to properly assess or diagnose such issues.
Attachment Disorder – and the extra distress a misdiagnosis can cause
When a child is labelled as having an attachment disorder, the parents are blamed and their parenting skills unfairly come under intense scrutiny. These are families who are already on the very edge of their ability to cope due to their child’s unmanageable behaviours, who when they reach the peak of their vulnerability, ask for help from those who are tasked by the state to support families like ours. Instead, due to the overwhelming lack of understanding and training, this act of reaching out for help through the proper channels results in untold extra distress, blame, accusations and fear.
We can do better
We can do this better, as a society we have a responsibility to protect and care for those in the most need. When the professionals get it wrong, they don’t mean to do any harm, but without robust training in the symptoms and behaviours common in certain conditions, it’s easy to see why the correct sort of help is not forthcoming.
The first thing we must do is to remove the stigma. We have to make it OK to talk about it openly, with no fear of judgement or blame or shame. Until we can talk about the issues and why they happen, those who have the capacity to fund services and training simply won’t be able to see that there is any need. Then we have to find solutions. Solutions will be different for each child who is exhibiting violent behaviour, and the work that is necessary to turn it around is highly skilled, very individualised, and has to be delivered on a one-to-one basis. That costs money, of course it does. But it costs nowhere near as much as it will cost if each child progresses to adulthood with their violence unchecked.
The Elephant in the Room
Over the past two weeks, I’ve realised something else. Many of our expert leaders in this field do know that this issue exists, and they have a fair idea of how big a scale it is on. However, it’s like the elephant in the room. It’s so big, so heavy and so difficult to move that nobody wants to take it on. It’s too big a responsibility, because for one of the experts to do something significant about it would mean that everyone would be looking at them to find all the answers, and there aren’t any quick fix or easy ones ever with this. So, nothing changes, nobody pushes against the elephant, it stays there, in the house, locked away with the vulnerable family and their even more vulnerable child.
It dawned on me last week that someone has to do something, and it has to be someone who has no professional reputation to maintain or who could be shot down in flames if they get it wrong. So I said It out loud, expecting people to laugh and say “don’t be silly”. “How about I arrange a conference about it?” I said. Guess what? The tickets went on sale today. In less than a week I’ve found a venue, I’ve invited some brilliant speakers who have all confirmed their acceptance, I’ve designed the shape of the day and I’ve set up an Eventbrite site. I’ve even designed a flyer, OK so it’s a pretty basic one, but it will do. I’m hitting social media, and please, if you see the flyer for the event on Facebook, Twitter or Linkedin, it would be great if you could share it on.
The Conference – Twitter hashtag #VCB17
The day is going to be a warm, accepting and welcoming day where people will feel emotionally safe to share their stories, but only if they want to. We’ll talk about the issues, we’ll look at the causes, some of the great things you might be able to do to help prevent or minimise them, and how to manage our own feelings too.
Most of all I want parents to feel that they are not alone, that this is not their fault, and that their stories and experiences are important, and that they are being acknowledged and valued. Between us we have a rich and untapped resource of knowledge and understanding of childhood violence. If we could somehow capture all of our collective experience, what a rich source of learning it could be. Next Saturday, in one room in Central London, there will be more people that ever before meeting to discuss this important and heart-breaking issue from a personal and from a professional perspective. We have to harness all that knowledge and personal history, and use our time together wisely to ensure that this is just the start of making a significant difference for families everywhere.
It’s not just the people in the room who are able to contribute their vast wealth of experience. Have a look at who has agreed to come and Speak at the event. For a tiny little idea I had a little more than three weeks ago, it is heartwarming and fills me with hope that so many amazing people have got behind this project and are with us all the way. Every one of our Speakers has chosen to give up their Saturday because they care and want to help in some way, and to stand alongside the parents and let them know that they are heard and believed. I cannot ask for a clearer message to go out to all the professionals everywhere who work with our families that this does really happen, and families need help, not judgement.
Look at who is coming! – Our Speakers
Hazel Watson – Head of Mental Health and Learning Disabilities (Nursing Directorate) NHS England
Hazel has many years’ experience as a Director of Nursing in Mental Health and Learning Disability services. As Head of Mental Health and Learning Disability Nursing for NHS England, Hazel is responsible for promoting best nursing practice, and providing clinical expertise to support the quality improvement of mental health and learning disability services. Hazel is closely involved with the ‘Parity of Esteem’ programme to improve health outcomes for people with mental health and learning disability issues. She is the national Clinical Lead for the NHS England Learning Disabilities Programme responding to the Winterbourne View commitments. She has particular responsibility for the implementation of Care and Treatment Reviews and for improving access to healthcare.
Kath Evans, Experience of Care Lead, Maternity, Infants, Children & Young People, NHS England
RGN, RSCN, MSc (Nursing), PG Dip (Education), BSc (Hons), PG Dip (Management), Institute of Leadership and Management (ILM) Accredited Coach.
Kath is a registered general and children’s nurse and her career has included clinical, educational, managerial and service improvement roles. She is Experience of Care Lead for Maternity, Infants, Children and Young People at NHS England where she is committed to ensuring the voice of children, young people, families/carers and maternity service users are heard in their care and in the design, delivery and commissioning of services.
Kath is a keen user of social media (@KathEvans2) to connect with communities to inform programmes of work and is a Health Care Ambassador for Save the Children.
Mark Brown – Special Needs Advisor, RNLD, MA Autism, Dip App Psych, Dip Prof Prac
Dr Cecilia Akrisie Anim, CBE, President, Royal College of Nursing
Term: 2015 – 2019
Dr Cecilia Akrisie Anim is the President of the Royal College of Nursing. The Royal College of Nursing (RCN) is the voice of nursing across the UK and the largest professional union of nursing staff in the world. The RCN promotes patient and nursing interests on a wide range of issues by working closely with the Government, the UK parliaments and other national and European political institutions, trade unions, professional bodies and voluntary organisations.
Cecilia, along with RCN Council and the RCN Chief Executive and General Secretary, are collectively responsible for the delivery of the RCN’s strategic and operational plans. The key priorities for the Royal College of Nursing is to promote the arts and sciences of nursing.
Cecilia was elected as President in 2015 and re-elected in 2017, after serving two terms as Deputy President (2010 – 2014). Prior to this Cecilia was an RCN Steward for 19 years and a Health and Safety representative for 17 years. Cecilia is a member of the RCN’s Council Executive Team, Membership and Representation Committee, International Committee, Ethics Committee and Awards Panel and Cecilia coordinates the RCN Menopause Network Group in London.
Cecilia has been honoured to receive the following awards:
Long service award for over 30 year’s commitment to the NHS
RCN Certificate of Merit for outstanding service to members, 2000
Bevan award for Health and Wellbeing, 2013
Wise Woman of the Year Award in, 2013
United Nations African Women of Excellence award, 2015
Zenith global Health Excellence in Healthcare recognition award, 2016
Honouree Doctorate from Bradford University, 2016
Commander of the Most Excellent Order of the British Empire, 2017
Cecilia originally trained as a midwife in Ghana, where she worked before moving to the UK and qualifying as a nurse in 1977. Cecilia works as a clinical nurse specialist in sexual and reproductive health at the Margaret Pyke Centre in London and specialises in family planning and aspects of women’s health with a particular interest in menopause and public health issues.
In her personal life Cecilia is actively involved in the activities of her local church, where she is a member of the PCC and also arranges flowers. Furthermore, she is the Chair of Governors of her local primary school and a member of the Deanery synod.
Professor Oliver Shanley OBE. Regional Chief Nurse, London, NHS England and NHS Improvement
Oliver took up his current post in December 2016.
Previously to that Oliver was Deputy Chief Executive and Chief Nurse at Hertfordshire Partnership University NHS Foundation Trust (HPFT) for seven years.
Oliver worked in Mental Health Services since 1987, qualifying as a Mental Health Nurse in 1990. He has worked clinically in a variety of mental health settings, predominately in Forensic services. After working at all clinical nursing grades from Staff Nurse to Senior Nurse Specialist, he commenced work in management.
He has worked at Executive Nurse level since 2003. Oliver is involved at a national and regional level in a number of areas including both safe staffing and safer systems work.
Oliver attained a Doctorate at Kings College London in 2012 and was appointed a Visiting Professor at the University of Hertfordshire in 2014.
In the 2016 New Year’s Honours List Oliver was awarded an OBE for services to Mental Health and Learning Disabilities Nursing
Jim Blair is Great Ormond Street Hospital’s (GOSH) first Consultant Nurse for Learning Disabilities, and currently the only consultant nurse for children or adults with learning disabilities employed specifically to work within a hospital. He has worked at GOSH since September 2013.
In addition to his work at GOSH, Jim is also Associate Professor (Hon) Intellectual (Learning) Disabilities at Kingston and St. George’s Universities and Health Advisor at the British Institute of Learning Disabilities.
Mary is a criminal law barrister who both prosecutes and defends in cases at all levels. She has over 15 years experience of serious violent offences as well as a specialist interest in Youth Court work and cases involving those with mental health/impairment/disability.
When she is not doing this she juggles lots of other plates unsuccessfully including the most 2 important side plates – her 2 sons. Her elder son has an ASD diagnosis which he has had since the start of primary school. She hopes he has been teaching her to teach others about ASD especially those who work in the Criminal Justice System.
Dr Girish Vaidya, MBBS, MD, MRCPsych, MSc (Healthcare Leadership)
Dr Vaidya is a Consultant Child and Adolescent Psychiatrist based in Sheffield. With over twenty five years of experience in psychiatry across two continents, Dr Vaidya brings a ‘common sense’ perspective to children’s emotional and behavioural problems. He believes in the need for parents and professionals to work together with a strength based narrative. As a Clinical Director, he is working with parent support group and young people to make their contribution to service improvement integral to any service development. As an Expert Witness for Family and Criminal Courts, he is acutely aware when the State can get things wrong leading to devastating consequences for children and their parents.
He is active on social media and believes the power of social media is underutilised in connecting parents / carers and professionals.
Malcolm Cooper, Master Clinicial Hypnotherapist, Dipl in Hynpotherapy, Dipl in NLP. Dipl in Personal Transformational Coaching. Animas Institute,
Dipl in Clinical Hypnosis, Diploma in Hypnotherapy and Psychotherapy (ICH).
After a 30 year career as CEO of his own Recruitment Consultancy, Malcolm qualified as a Clinical Hypnotherapist in 2010. He works with individual clients on a range of issues, and he works with groups of people on stress management and relaxation. He is Yvonne’s “other-half” and has a special interest in the causes of stress that are unique to special needs parents. Having supported Yvonne since her initial diagnosis, he is passionate to do whatever he can to help this cohort of parents learn how to manage their stress, increase their resilience, and remain both mentally and physically well.
Yvonne Newbold, Special Needs Parent, Author, Speaker, Trainer. Author of “The Special Parent’s Handbook”, PEN National Award Winner 2016 – Outstanding Contribution to Patient Experience, LDT Learning Disability Champion 2015, HSJ Top 50 Inspirational Women in Healthcare 2014, School for Change Agents 2017. Stage 4 Cancer Patient
When Yvonne was told that her cancer had spread and that her poor prognosis indicated that she would have an average of only two more years to live, she knew exactly what her bucket list was going to be. She wanted to do whatever she could to make things better for the next generation of special needs children and their families in whatever time she had left, and that is exactly what she has been doing ever since. She also works with the professionals from health, education and social care who work with families like her own, and she speaks at conferences, runs workshops for parents and professionals, supports parents on social media, advises on policy, and continues to write extensively and create video learning resources on YouTube and Udemy. Her passion is to challenge the culture of “them and us”, bringing down barriers and building bridges to help to change the conversations around the things that really matter. She believes that kindness, human connections, listening and acceptance are the core principles that should underpin all Public Sector Services. Improving services doesn’t have to be all about spending more money, that it’s the simple “heart and soul” connecting with each other the things that don’t cost a penny but which are priceless, that will enable services to be transformed. She would like to see people put back at the centre of services instead of the policies, procedures, pathways, protocols and other bureaucracy which is strangling everyone, staff and patients alike, in pointless and counter-productive red-tape.
It gets even better – we have Sponsors
Three weeks ago, when I first announced this Conference, I had no funding or backing whatsoever. Now we have two very generous sponsors, and their wonderful funding has enabled me to offer tickets at significantly reduced prices to families who otherwise would not be able to afford to attend. The funding has meant that I can offer better facilities on the day itself and means that I’m no longer taking a huge personal financial risk. Huge thanks to NHS England and Whose Shoes.
Join us at the Conference
I’m inviting the practitioners who work with our children from education, health and social care to come too. It isn’t about them and us, we all should be pulling together we kindness and respect on all sides if we want the best outcomes for the children in our care. We can learn from each other, we can share thinking from differing perspectives, which may help us develop more workable solutions. I’m hoping to be able to offer CPD accreditation for attending the event, and I know that there will be some very rich learning experiences during the day.
As I write this, six days before the conference takes place, we only have 10 tickets left. If you’d like to join us and take part in the start of these important conversations, I’d suggest you book as quickly as you can!
London on Saturday 1st April 2017, #VCB17
Conference on Violent Challenging Behaviour
in Children with Special Needs
If you would like to go on a waiting list in case of cancellation, or to hear of any future events on this issue, please email me on email@example.com
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