As I write this, it was exactly this time a year ago today, on the 21st February 2017, that I was on my way to the BBC’s Broadcasting House to take part in a live discussion on Radio 4’s Woman’s Hour about violence in children with disabilities. I was a mix of excitement, apprehension and nerves, but I had no idea that life was never going to be quite the same ever again.
I was hoping that I’d be able to get away with talking about the subject in general terms, and I certainly had no intention of talking openly about Toby’s behaviour and what we’d lived through as a family. It was too private, much too deeply personal and I didn’t want anyone to judge us or to think any less of Toby. And then it happened. Jane Garvey asked me a particular question and I knew that if I didn’t answer it honestly it simply wouldn’t be authentic. So, the first time I ever talked publicly about Toby’s challenging behaviour, four million Woman’s Hour listeners heard me. Ouch.
The BBC edited some of what I said into a short Podcast, which you can listen to here.
Afterwards I was a bit of an emotional mess, I felt I’d said too much and had let our whole family down. Malcolm was waiting for me in their Green Room, and he gave me a hug and I could tell he knew I was wobbly. I turned my phone back on, we said our goodbyes and headed off towards the Broadcasting House lift. Before we got there, my phone started pinging. Again and again and again, and by the time we were back out in the open on Portland Place, the notifications were coming so thick and fast that my phone sounded like it was angry with me. I was almost too scared to look – I thought it must be friends and family who felt I’d said too much. However, it wasn’t. It was dozens of complete strangers sending private messages on social media, all of them also parents of additional needs children who were violent at home. They were thanking me for sharing our story, and many of them shared their own story with me too.
The messages just kept on coming, for weeks, then months, and now, a year later, I still get contacted every day by parents in the same situation. The dozens became hundreds and now are in the thousands. I had no idea that this 
issue was so widespread – when it was happening in our family we thought that we were the only ones, and I felt like it must be all my fault. In those early weeks as I read one harrowing and heart-breaking story after another, patterns started emerging which horrified me. Parents repeatedly told me how hard they had tried to get help, but instead had only had blame and judgement, from the professionals who are supposed to support our families as well as from friends and family. I heard from other families who had older children, and despite pleading for intervention for many years, no help had ever been forthcoming and those children were now adults and in prison. I heard from countless other families where the frontline staff tasked with supporting their children had misinterpreted their child’s behaviour and had assumed it was a child protection issue. Parents had been judged, blamed and stigmatised as they were taken through child protection proceedings, and many had lost custody of their children as a result.
It was a steep learning curve that I found myself on. The biggest eye-opener was the scale of the issue – there were thousands of families like my own, facing dangerous, frightening and intolerable situations behind closed doors. Yet I had always been led to believe that Toby’s behaviour was highly unusual, and that it must be at least partly due to my own poor parenting skills.
The next thing I learnt was that this isn’t a parenting skills issue at all. The parents who were getting in touch were highly articulate, intelligent, responsive, compassionate and caring people who only wanted the very best for 
their children. By the time they were in contact with me, they had tried every possible parenting strategy they could think of. These were not the failing parents, these were parents with extremely competent skills who were facing situations that most people couldn’t even imagine, and they were courageous enough to get up every morning and try again, never ever giving up hope for their child.
I also found out that hardly any research into this has been done at all, and without evidence-based data, there are no reference points to recognise a need, so not only have robust services never been developed to support these families, the frontline professionals who parents approach for help are unlikely to have had any training in this whatsoever, so it’s hardly surprising that they cannot understand it and often take the wrong approach.
I did find a very small-scale research study that had been done in the US, which indicated that children with a 
neurodevelopmental disorder such autism or a learning disability are highly likely to become violent at home – it found that up to 56% of all children with autism and up to 25% of all children with a learning disability are aggressive towards family members at some point during their childhood. I did the sums – that means that, in the UK alone, there are likely to be over 40,000 families facing this issue every day. Behind closed doors. With no help, recognition or support whatsoever. You can read this research here.
Almost every message I received asked me for help in getting support. How do you tell despairing parents that there is no help? How do you walk away from such a huge tide of human tragedy? I simply couldn’t.
Instead, six weeks after the Woman’s Hour interview, on the 1st of April 2017, I organised the first ever Conference 
on Violent and Challenging Behaviour in children with Special Educational Needs and Disabilities. SEND VCB as a descriptor was born.
The Conference began to take on a life of its own. I think it ran me much more than I ran it, and tickets sold out soquickly that by the time the day arrived the waiting list was long enough to have filled the room twice over again. Parents, professionals and speakers came together in a spirit of hope and total acceptance, with a willingness to listen, to learn and to bond. Life-long friendships were made that day, tears and laughter shared freely and for the first time for many of us, parents of SEND VCB children were able to talk candidly about their daily lives in an emotionally safe environment among people who believed them and understood what they were going through. You can find out more about what happened on the day, and what the feedback told us here.
At the end of the day, as I wrapped the event up and thanked everyone, I knew we couldn’t just leave it there. The words were out of my mouth before I’d had a chance to think, and I was offering to 
set up a Facebook Group for parents who were there that day to keep in touch with each other and offer support. In the 10 months since, the Facebook Closed Group “Breaking the Silence on SEND VCB” is now a thriving community with nearly 900 members, pooling ideas, sharing strategies, trialling approaches, comforting each other on the bad days and sharing our collective triumphs when things go well. If you are also coping with SEND VCB, please find us and join, we’d love to have you on board too.
When Toby’s behaviour was at its most challenging, it took me seven long years to access help, seven irreplaceable years of my three children’s childhoods that were stolen, and I was left helpless with no idea of what to do, where to turn, or how to make this whole awfulness better. When help finally arrived in the form of an amazing Positive 
Behaviour Support Specialist, he taught me things that were so simple, and which actually worked. We turned Toby’s behaviour around completely. It wasn’t always easy, there were no quick fixes, we had a lot of setbacks on the way and some days I wanted to throw the towel in because I couldn’t see how any of this could possibly work, or how I could possibly keep it up. Yet we did.
Toby has complex medical needs, a profound and multiple learning disability which means he has the cognitive functioning equivalent level to a neurotypical two-year-old. In other words, he had no understanding of what we were doing or why, yet slowly over time he learnt how to trust us, and he realised that we were actually on his side and wanting to help. I am so proud of him and how calm and happy he is now, after some truly terrible years, he has re-connected with the sense of joy, mischief and slap-stick hilarity that we remembered so well from when he was tiny.
If Toby, with his limited cognition and communication can turn his behaviour around, any child can, but only if their parents are shown what to do and how to do it.
One aspect of this whole phenomenon which has shocked me was to find out that behaviour approaches similar to the ones that we were taught have been around for 30 years, and have been widely implemented throughout adult services when there are people with a learning disability or autism who also present with violent behaviour. Yet these approaches are virtually non-existent in children’s services, and parents are completely kept in the dark about them. So are the frontline professionals across education, healthcare and social services, the very people parents first turn to when their child starts to lash out and hurt family members regularly at home.
Research has shown that a disproportionately vast number of young offenders within our prison populations have 
neurodevelopmental disorders such as ADHD, Autism or a Learning Disability. I know now of many young children who have similar conditions, and who are already on a trajectory which will lead straight to our Criminal Justice System when they reach their late teens. Yet we have the knowledge, the understanding and the skills to help them now, and to give them back their futures where they can look forward to a happy and productive adulthood. So why isn’t it happening?
Violent and Challenging Behaviour in children has been completely swept under the carpet and ignored for decades, yet it is addressed in adulthood. Do our policy-makers really believe that children go to bed on the night before their 18th birthday, never having had a moment of aggression, and then wake up 8 hours later as a first-time adult, suddenly having learnt to hit, throw, bite and punch?
I’d like to see a time when every parent of a child with any neurodevelopmental condition is given information about SEND VCB at the moment of diagnosis. I’d like them to know that it is a prevalent symptom of the anxiety that their 
child’s condition makes them more susceptible to develop. I’d like this information to cover the very basics, and give parents the basic skills to start turning things around, or better still, to follow some simple advice in this information which might prevent behaviours becoming violent and challenging in the first place. I’d also like there to be a very clear pathway of help and how to access it quickly and easily, so that every child has the chance to be helped to turn their behaviour around before it’s really become an established pattern.
Until that happens, I’m going to continue to do whatever I can to help families within the SEND VCB community, because now I know how many families there are without support, how can I turn my back on them too?
I’m also writing “that book”, the one which will be full of information, resources and self-help for families in this situation. Meanwhile I’ve also written extensively on the topic, passing on what I’ve been lucky enough to have the time to learn, time that parents in this situation are using to fire-fight one violent crisis after another. This one is a good place to start, because it covers what I called the 30 Basics of SEND VCB.
I’m offering a series of four Workshops for professionals and for parents passing on the basic knowledge to get started in supporting a child to find other ways besides violence to communicate their needs. Each of the four Workshops covers different aspects of SEND VCB, with one also looking at Puberty and Sexulaised behaviour, one looking at ways to strengthen emotional resilience and mental well-being of parents, and one looking at how to minimise the effects of SEND VCB on siblings.
More Support
Webinars and training, Facebook Support, resources to read or watch
Have you been to one of Yvonne’s webinars yet?
They cover a range of topics relating to behaviour issues in children with additional needs, and are packed full of insights and strategies that can help you to support a child in moving beyond their extreme behaviour patterns towards much happier and calmer times with a brighter and much more hopeful future to look forward to. Due to NHS England Funding, current webinars only cost £2.50 each, with free places for families in financial hardship. For more information please click this link – https://yvonnenewbold.com/webinars-workshops-courses-and-books/
Yvonne runs a Facebook Page called The SEND Parent’s Handbook for parents of children with disabilities and the professionals who work with their families.
If you are a parent of a child who has SEND VCB, Yvonne also runs a closed Facebook Support group, which you would be welcome to join, called The SEND VCB Project – Support Group for Families
There is another Facebook Page called The SEND VCB Project – Public Page which is for anyone to find out more about this and closely related issues, and it’s open to everyone
If you’d like to buy a copy of “The Special Parent’s Handbook”, which is the book I wish someone had been able to give me on the day Toby was born. It’s got virtually everything I’ve learnt since about Additional Needs Parenting so that SEND parents don’t have to go it totally alone. 
Here’s the link to order yours
Alternatively you can order it from Amazon – here’s the link to the page
Yvonne is a member of the Amazon Affiliates Program which means that if you click on an Amazon link from this website and subsequently make a purchase, she will be paid a small commission.
