The Story of Newbold Hope - the long read

Introducing Toby


Our story began a long time ago when Yvonne’s son, Toby, was born in April 1994. He was her second child, a little brother to Francesca who was then eighteen-months old. As soon as Yvonne saw him, she knew Toby had enormous difficulties ahead of him. He was full-term yet tiny, weighing barely five pounds, and there was a vulnerability about him that she recognised immediately and tried to explain to the maternity staff around her. Instead of the help she needed for him, she got kindly reassurance that everything was fine. She knew it wasn’t but couldn’t get anyone else to see it. Yvonne and Toby came home the following day, and every time Toby was breast-fed, he turned blue and couldn’t breathe. She spoke to her community midwife, her GP, and her Health Visitor, but no one could see anything other than a healthy baby who had an over-anxious mother. The more she tried to get help for Toby the more concerned they seemed to be about Yvonne’s own mental well-being.
 

What happens when young mothers aren’t properly heard or believed


When a young mother is repeatedly reassured that nothing is wrong, they begin to doubt themselves and start to believe that they are overreacting because they must be over-anxious, but a mother’s instinct is usually spot-on, as it was in Yvonne’s case.
 

Toby’s early life spent in hospitals


At two-weeks-old, Toby was blue-lighted to hospital from the GP surgery with a chest infection so severe that his lungs had collapsed, and he wasn’t expected to survive through the night. That was the first emergency hospital admission of many that lasted for several weeks or months which would dominate Toby’s first six or seven years. He was in hospital, desperately ill and fighting for his life for nearly three-quarters of those first very traumatic years, with Yvonne staying with him throughout as a resident parent.  She lost count of the number of times things were so bleak that it didn’t seem likely that Toby would make it through the next few hours. Each time he defied the odds, rallied, and reverted to the happy, laughing little boy who loved life, until the next severe chest infection hit him with a vengeance, and he was back in hospital, fighting for his life all over again.
His medical team were baffled by him. They did every test and investigation that they could think of to try to ascertain what was going on. They knew that he was in a race against time because with each new chest infection, he was becoming weaker and less resilient, and his lungs were becoming more scarred and less efficient with each new bout of illness.

 

His diagnosis


Eventually there was a breakthrough. Toby had Pseudo-Bulbar Palsy, which means that his throat didn’t work properly. Every time he was fed, he was at a very high risk of swallowing it into his lungs instead of his stomach. When this happens, and it sets up a chest infection, it’s called “Aspiration Pneumonia”, and each episode is life-threatening.
So, Toby had to be tube-fed for several years, and even now all his food has to be pureed, his drinks must be thickened, and there is a very high-supervision protocol in place for all mealtimes.
Over the years, more and more of the mysteries of Toby’s medical condition were unravelled. It turned out that he has a syndrome which is so rare that nobody else has ever been identified as having it. He is unique, the only one they know about.

 

The loneliness of being a SEND mum


That has made being Toby’s mum a very lonely place. No clinician has ever met anyone quite like him before. There are no research teams working around the clock to find a cure or any treatment. His notes are too extensive for any clinician to have time to read back much beyond the previous few entries, so the only person who has any real handle on his entire medical history is his mum, Yvonne. It also made it harder to access services that could have helped and supported Toby and his family. Several services have lists of criteria that have to be met before a child can be accepted by a service, and of course, Toby’s rare medical condition was never included in any of those lists.
 

Toby now


Toby is now 27 and living a very happy life in a residential care home less than a mile from the family home. His health now is much more stable, but he has a long list of complex medical needs and disabilities that continue to make life much more challenging for him. He has an intellectual disability which means that he functions at a similar level to a mainstream two-year-old, so he loves things like Mr Tumble, slapstick humour, action songs and games such as hide and seek. He is also non-verbal, and he is autistic as well.
 

Toby’s behavioural challenges


Eventually, Yvonne and Toby’s medical team learnt more about Toby’s condition and were able to manage things better at home so that the hospital admissions lessened, and Toby was able to be at home much more and attend school much more regularly. However, as his health stabilised and he grew a little stronger, he developed incredibly difficult behaviour that was often violent and very unpredictable at home and towards his mum and his big sister, Francesca, and towards his little brother, Adam.
 

No one could help


Yvonne asked for help from virtually everyone who was on Toby’s team. He had some amazing people on his side who worked tirelessly to achieve the very best for Toby and for his family. However, nobody seemed to know what to do about Toby’s behaviour. Many of his team were shocked by what they were being told because what was happening at home was so at odds with the smiling, happy-go-lucky laughing little boy they knew in other aspects of his life. Many had never seemed to come across this sort of on-going prolonged episodes of violence, and nobody had any advice or solutions. There were no specialist services that might have been able to help. Nobody knew what to do, and Yvonne and her family was left alone, unsupported, and from the reactions of people that she had spoken to, she believed that this was so unusual that it was practically unheard of, and that they must be the only family going through these incredibly difficult times.
 

It became Mum’s fault


As things worsened at home, the narrative changed. It became Yvonne’s fault. Whenever a child behaves in difficult and dangerous ways other people often wrongly assume that it must be due to the parent’s poor parenting skills. To be more specific, in most cases, it is the mother that gets blamed and judged by everyone else. The blame and the judgement is relentless. It comes from family, friends, school staff, social services, clinicians, neighbours and from strangers and passers-by.
 

Misguided advice


As the blame and the judgement happens, everyone tells the mum what they should be doing. From family, friends and professionals the very same message is drummed home incessantly, and the advice is that the mum must be too soft, too weak, that they’re making a rod for their own back or that they’re spoiling their child. They are urged to parent harder, stricter, more firmly, with consistent boundaries being enforced and sanctions and consequences imposed that will “teach their child a lesson”. Yvonne did all that, and things got worse, not better.
 

Why blaming a parent makes things worse


One of the saddest things that happens when a parent is continually blamed and judged, is that they absorb all this negativity and start to believe it too. Once someone thinks that it’s all their fault, it’s only a very small psychological step to start to believe that you deserve any hurt or injury caused by your child’s behaviour. Their self-confidence, self-esteem and their sense of self-worth is brutally damaged in the process. The effect of this can be catastrophic. Just at the very time in their lives that parents need to believe in themselves and their ability to turn things around for their child and their family, instead they are so often crushed and broken by societal deeply held but erroneous beliefs.
 

Getting the right help took 10 years


It took 10 years for Yvonne’s family to get the sort of help that they needed from the very beginning. A new service had been developed in a neighbouring London Borough, especially for children who had difficult and dangerous behaviour as well as a significant learning disability. It took nearly 2 years to be able to persuade local health, social services, and education to fund it, two years of incredibly frustrating multi-disciplinary meetings which can only be described as playing games of budgetary ping-pong. Eventually the referral was made, however, Toby was only a few months off his 18th birthday by then. This was a paediatric service, and it would be pulled on the same day he reached adulthood. Nobody really thought it would make any difference in the short few months that we had to turn things around. Instead, what happened could best be described as magical.
 

Learning how to parent differently


Yvonne was shown how to parent Toby differently and how to respond to his extreme behaviour episodes differently. She learnt that anxiety was the underlying cause of Toby’s difficulties. He wasn’t doing this deliberately. The anxiety was causing him such distress, confusion, and fear that his autonomic nervous system was primed to move him into a state of fight and flight, and when he was trying to hurt the rest of his family it was because in those moments, he believed that he needed to fight for his very survival.
Yvonne had reached a point whereby she felt she had tried everything, and nothing had worked. She felt it was all her fault and that she was a rubbish parent. With the support of the supportive and knowledgeable specialist staff working with her and Toby over those few months, she realised that she had only tried everything in one direction. She had gone up and up and up in trying to be an authoritative parent who was laying down the law. She hadn’t known there was another direction to go in, becoming more collaborative, kinder, more understanding and more responsive to recognising Toby’s unmet needs.
 
The life-changing importance of the right help


In a few short months family life was transformed, with Toby happy, engaging and laughing his way through life just like he had during his early childhood. When a child is so anxious that their behaviour is escalating, the traditional disciplinary strategies that society so strongly believes in simply won’t work. Imposing sanctions and consequences on a child who is already frightened, confused, distressed and out of control will only ever make them feel worse, not better. Children and young people with the type of distressed behaviours caused by anxiety need a completely different approach with oodles of love, compassion and understanding.
 
Yvonne’s diagnosis


Toby turned 18. In his early days, nobody had ever expected him to survive into adulthood, so it was a very special time. Best of all, he was happier than he had been in a very long time, and everything was looking very good indeed for his whole family. However, there was some very difficult news on the horizon. A few days later, Yvonne was diagnosed with bi-lateral breast cancer, and had to undergo several months of very gruelling cancer treatment. At the end of treatment, there was yet more bad news. The treatment hadn’t worked, the cancer had progressed, and Yvonne was told that she was highly unlikely to live more than a couple of years, even if she continued on long-term cancer treatment.
 
Yvonne’s Bucket List


That day, she needed a bucket list, and she knew that there was only one that would mean anything at all. To do whatever she could to help the next generation of children and families with disabilities and additional needs to have an easier time of it than her own family had had.


The first thing she did was to write, “The Special Parent’s Handbook” which was the book she wished someone had been able to give her on the day that Toby was born about everything she’d need to know along the way to make things easier for him, his brother and sister, and her whole family. Completely unexpectedly, it became an Amazon Number One best seller, which led to Yvonne being invited to speak at conferences and to run training courses and workshops for both professional staff and parents. She also started being invited to take part in TV and radio discussions about disability issues. However, she was always very careful not to focus on the behavioural issues that had been such a large part of their family life for over 10 years. She still felt that it had been her fault, and she also thought that it was such a rare occurrence that nobody would truly understand, and she would open herself up to the blame, the shame, and the judgement that she had endured for so many years.
In February 2017, Yvonne was invited onto BBC Radio 4’s Woman’s Hour, and in the intimacy of the radio studio in Broadcasting House she was asked a question which led to her talking openly for the very first time about those really tough years when Toby’s behaviour had been dangerous, violent and at times terrifying. Thousands of people across the UK were listening and what happened next was life changing.
 
 
The day Yvonne learnt they weren’t the only family to have experienced this


People started getting in touch with Yvonne across social media and telling her their stories of very similar childhood violence from their own children who also had disabilities or additional needs. This was 15 years after Toby’s behaviour had first started to deteriorate, and parents were telling Yvonne about how they were also being blamed and judged, how they couldn’t get people to believe them or help them, and how bleak and hopeless life had become for them. By the end of that day, over a hundred parents had reached out to Yvonne, each one sharing their desperately sad family story, which made heart-breaking and harrowing reading. The emails and messages kept on coming as the days turned into weeks. For the very first time Yvonne began to take on board that perhaps this was a much bigger issue than had ever been acknowledged by the Government or by the Statutory Services.


The SEND VCB Conference


Yvonne had no clue how to help, but she knew she couldn’t turn her back on this huge group of people who were in huge need of help, understanding and some sort of hope. So, with no experience whatsoever of running a live event, she decided to organise a conference. She posted about it on Facebook with only four weeks to make everything happen, and within 48 hours tickets had sold out and there was a wait list that was so long she could have filled the venue three times over.
The first ever SEND VCB Conference happened on 1st April 2017. SEND VCB was a term Yvonne coined to describe the issue of violent and challenging behaviour in children with special educational needs or disabilities. The atmosphere was electric. Bringing people together with the same common experience; people who had learnt never to talk about what was going on behind their closed doors for fear of yet more judgement and blame. There were families at the conference who had had their children removed because their local Social Services department didn’t understand why SEND VCB happens and had assumed that it must be the parents’ own fault. Everyone there had a story to tell that was difficult to hear, and for the first time in many years, this group of families felt that they were being properly heard, understood, believed and accepted.

 

The Facebook Group


That evening, Yvonne started to set up a private Facebook group to enable all the families who had been there during the day to keep in touch. That group now supports over 9,000 families, all coming together to support and help each other to enable their children to move beyond their difficult behaviours. Everyone in the group is a parent or very close family member of a child or young person who has an additional need or a disability, and who is also sometimes actually physically violent towards other people, either at home within their family or elsewhere.
 

Training for parents and professionals


Yvonne then developed training courses about violent and challenging behaviour for parents and for professionals. She also found two little-known research studies which indicate that the incidence of violent and challenging behaviour in children, young people and adults with an additional need or disability may be as high as 50%. That was the confirmation that she needed to understand that these behaviours are not the parent’s fault, and they are not the child’s fault either. They aren’t even the fault of the child’s primary condition. These behaviours are nearly always caused by anxiety, which is more common in children or young people who have a disability or an additional need of some sort.
Since the beginning of the Pandemic, Yvonne has been shielding because her health status makes her extremely clinically vulnerable. However, this has given her the time to develop the training courses into 16 different topics, all relevant to parents of children with an additional need. She has presented nearly 200 live online training webinars in that time, all from her dining table, and around 20,000 people have booked onto them.

 

The positive feedback and family success stories


These training sessions are having a huge impact on families all over the UK and beyond. Yvonne receives about 10 thank you messages every single day from parents of children who have either significantly reduced their difficult and dangerous behaviours, or they have managed to move completely beyond them. The approach that Yvonne takes and the strategies she shares really do work, and more and more she is now also training professional staff from schools, health, and social care settings.
 

Why we need to plan ahead to reach families well into the future


However, now is the time to work towards making the SEND VCB Project more sustainable, so it’s work can continue long after Yvonne is able to carry it out herself. That’s why Newbold Hope was set up on 4th October 2021. Over time, as the organisation becomes more established and more financially stable, we will be able to reach many more families and help them to help their children to be happy again too. That’s the bottom line – happy children seldom hurt other people.
We also know how huge a need there is for reliable, supportive and easily accessible help and support for families that helps everyone to feel good about themselves again. Based on the research that indicates that 50% of children and young people with an additional need or disability may develop such severe anxiety that their behaviour becomes difficult or dangerous, it’s likely that every single day in the UK, nearly a quarter of a million families are facing this heart-breaking situation, totally alone and with no help or support available locally. That’s why this work must continue.


In the meantime, Yvonne continues on long-term cancer treatment, she is still living with a terminal cancer diagnosis, but best of all, she is still alive 9 years later, and nobody quite knows why! However, she is well aware that she is living on borrowed time and that things could change very suddenly at any time. It’s time now to build a team who can carry on this work when the day comes that Yvonne is no longer able to do it.