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 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 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.
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.
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.
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.
The best team ever
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 and WHIS
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.
Gill, Ruth and NHS England
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.
A fab lunch and a great venue
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 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.
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 here
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.
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.
What the parents said
“Great day, internally emotional, great atmosphere, relaxed, informative”
“I feel I’m not alone. There is hope”
“Excellent – more of these please!”
“It has been a fantastic conference and thing you have done a wonderful job organising the conference. Also, everyone who supported you did a fantastic job too.”
“The legal advice is very useful to know”
“The relaxation at the end was lovely and calming”
“It was great to chat to people in a similar situation”
“Excellent speakers. Really thought provoking”
“A wonderful informative day – can we have some more please?”
“Thank you for the day”
“Would love a get together again – maybe some more time for grouping together? More Mark please for another time!!!”
“Please can we have a FB group for this”
“A lovely, lovely day.”
“All speakers insightful and relevant topics”
“What a wonderful time I’ve had, it was all worth the long journey, thank you so much.”
“Would love to attend more seminars/conferences on this and get together with all these lovely people who are going through the same.”
“Would love more Mark Brown next time and also get Malcolm to do a download of his meditation”
“Dr Girish was brilliant as was Mark Brown”
“Great lunch, great vibe, look forward to next one”
“Feel-good and empowering”
“I really want to see the momentum continue. Absolutely fabulous”
“Amazing! I will never forget this day!!”
“So helpful, answered a lot of my doubts and questions on how to move forward.”
“I’m feeling confident and positive.”
“Loved today, it was a privilege to be part of this”
“Fantastic day – speakers really relevant. Some I would have loved to hear speak longer.”
“Thank you Yvonne – it exceeded all my expectations”
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 – email@example.com
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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
To buy your copy of “The Special Parent’s Handbook please click on the link to the Amazon page below