Full text of Yvonne Newbold’s TEDx Talk titled ‘HOW TO MEET YOUR CHILD’S DIFFICULT BEHAVIOR WITH COMPASSION’ at TEDxNHS conference.
Listen to the audio version:
TRANSCRIPT:
Yvonne Newbold – Founder of Newbold Hope
Tell me, have you ever seen somebody else’s child behave appallingly in a supermarket? Did you secretly blame the mum for her lack of control? Or did you even feel a little bit smug because you knew that your child would never behave like that?
For ten long years I was that mum you were staring at, and those stares hurt. They made me feel I was failing as a parent. And it wasn’t just other people who I didn’t know in shops that were judging me. That judgement came from friends and family, from healthcare professionals, from school staff and from social workers.
Being judged consistently for such a long period of time diminished my self-esteem and my self-confidence. It left me feeling crushed and broken. It had a really overwhelming impact on my ability to be able to do anything well, including my ability to be the best parent possible to my three children at exactly the time they really needed me to be right at the top of my game.
Now my little child Toby, he’s gorgeous. He is funny, he’s boisterous, he loves people. But he also has a profound intellectual disability: he’s autistic and he can’t talk. And that means that sadly Toby’s also had to get used to being judged and stared at as well.
Just think what a scary place the world must be for Toby. And he can’t even ask any questions to try and help him make sense of what’s going on around him. When somebody can’t talk, often the only effective way they have of communicating is through their behaviour. And throughout Toby’s childhood, the more frightened he became, the more frightening his behaviour became as well.
For those ten years our family lived with terrifying, violent and challenging behaviour. With somebody getting hurt nearly every single day.
Now Toby had a fantastic team of specialists around him, but nobody knew how to help. Staff had not had any training in anxiety-led challenging behaviour and there were so few, if any, services that had been developed to support families like ours. And here we are nearly 20 years later and nothing’s changed.
Instead of guessing the essential help and urgent support these families need, they are instead being repeatedly and wrongfully blamed, shamed and judged for their children’s anxiety-led behaviour. And they’re also being told that they’re being too soft and that they’re spoiling their child.
Throughout all those times, everyone was urging me to parent Toby harder and stricter and more firmly. I followed their advice to the letter, but Toby’s behaviour got worse, not better. Of course it did. I can see that now. He was a frightened and distressed little boy. He needed love and kindness. Being harsh and strict was never going to work, but I didn’t know that then.
So I really tried to follow all their advice. Everyone was singing from the same song sheet. And the message was loud and clear that I was an incompetent parent who was failing my child and badly letting down his brother and sister. Those years were incredibly tough and all that judgement made it so much harder. A little bit of kindness and an attempt at understanding could have gone so far.
Over time, in the absence of any professional help, I eventually developed my own wild and wacky strategies that sometimes worked. However, people then were often as bewildered by my own decidedly odd behaviour as they were by Toby’s, particularly at hospital appointments.
Now hospitals are very controlled and structured environments staffed by highly trained professionals. That’s absolutely everything that Toby is not. Toby’s noisy and he’s playful and he’s chaotic and he’s disruptive. It was always going to be a disconnect.
The other thing about Toby is he’s incredibly hospital savvy. He can spot a healthcare professional at 100 paces and you’re not always his favourite people. He also knows things about hospitals that you don’t know. He knows that if he’s halfway down a really long hospital corridor, if he shouts at the top of his voice, it’s going to create magnificent echoes and people are going to react.
Almost every time, within seconds of arriving at a hospital, people were giving us a wide berth and they were already rolling their eyes. Now keeping Toby safe and happy in a hospital isn’t easy. But if I failed, people could get hurt and equipment broken, so the stakes were high.
I was constantly on hyper alert, ready to leap in to distract or divert if things looked a bit tricky. And it was essential that I was able to communicate with Toby in ways that I knew he’d have the best chance of understanding. Unfortunately, there wasn’t always time to explain to people what I was doing and why.
So, if you wanted to take Toby’s blood or to do his blood pressure, I might thrust my arm out like this and ask you to pretend to do it to me first. Because that way, Toby has a better chance of understanding what’s going on, so he’s going to be more likely to cooperate. Toby also understands things much better if there’s some to him.
So, if you need to listen to his chest and he needs to lift his t-shirt up to let you be able to do it, I might have to tell him like this: Where is Toby’s tummy? Where is Toby’s tummy? Where is Toby’s tummy? Show it to the doctor.
And Toby isn’t naturally compliant, but he loves playing games. So, at the end of an appointment, if Toby is far too happy sitting on your floor and emptying all your cupboards to want to stand up and leave, I might have to play, where is Toby’s face?
Now, I play this by cupping my hands like this in face shape and putting them all over the room, saying things like, is that Toby’s face?
Where is Toby’s face? Has anybody seen Toby’s face? Oh, could that be Toby’s face?
Eventually, he’ll cop on to what I’m doing. He’ll burst out laughing. He’ll stand up. He’ll lean his hands into my face. And, great, except that if it’s a really bad day, we may still have to perform the entire hooray dance before we can leave you in peace.
Now, by now, the look on the face of the average clinician is one of sheer horror and fear. And there’s a clear assumption that I’ve lost the plot and gone bonkers.
The very worst thing that can happen next is if that clinician decides to try to take over. And, because they obviously can’t believe I know what I’m doing, that has meant that sometimes Toby’s been physically manhandled out of the room while he and I are both being told off really loudly. That’s almost exactly what’s guaranteed to frighten Toby into the worst type of behaviour possible.
Sometimes we’ve had a fantastic experience. We’ve met some great people who’ve been really happy to join in and play along. It’s remarkable how well a game of hide and seek can lend itself to assessments of cognition, communication skills, mobility and even Toby’s breathing.
But whenever I’ve really felt judged in those situations, all I’ve wanted to do is to run away as fast and as far as I can out of your office. Now, when I’m feeling like that, it’s almost impossible for me to open up and share with you my real concerns about Toby’s health. Which means that’s going to make your job much harder in being able to assess him and to come up with treatment options. Which of course is going to impact on Toby and his long-term outcomes and wellbeing.
Being judgemental really can be the starting place of health inequalities. But being judgemental is so easy. When you judge people who already feel vulnerable, you’re only ever going to make us feel more ashamed, more rejected and more unworthy. Kindness is so important. It can make such a big difference. Kindness is powerful and it really can bring out the best in all of us.
But I’ve got another favourite word, curiosity. When we stay curious, we keep asking those why questions, which helps us to build bridges towards better understanding. When we stay curious, it keeps our hearts and our minds open, which helps to prevent us forming those judgements.
If ever you see me with Toby and my behaviours looking a bit off, the very best question you can possibly ask me is: Do you need any help and if so, what can I do?
Eventually, we were referred to a fantastic team who totally understood why young people like Toby can develop these anxiety-led behaviours. Dr Helen Simmons and David Smith, they were there for us, they listened, they just understood, they just got it and never once did they make me feel ashamed, blamed or judged.
I was so excited that first day that David had just come to our house and I couldn’t wait to ask him that all-important question: ‘So David, how are we going to change Toby’s behaviour?’ David put his cup of tea down, he looked at me, he took in a deep breath and then he dropped a bombshell.
‘No, I’m not here to change Toby’s behaviour, I’m here to change yours.’
‘What?’
I was not happy, I was horrified. It sounded like the same old, same old blame and judgement all over again, but it wasn’t what he was showing me, it’s that I had to change first.
So, I had to unlearn almost everything I thought I knew about parenting. What I learnt was about anxiety and exactly why Toby’s behaviour became so difficult because anxiety made him so terrified.
I learnt that when he was lashing out, what he was really trying to do was to scream out for help because he felt so frightened and the world was so confusing and he needed help.
I learnt that when he had hurt me, it wasn’t because he hated me, it was because he trusted me more than anybody else in the world to be able to offer him that help that he so badly needed.
So, up until then, I had gone up and up and up in terms of being stricter and harsher and firmer in the way I parented Toby, just like everybody had told me to. I thought I’d tried everything, I didn’t think there was anything left. Helen and David showed me that there was an entirely different direction and I could go down and down and down as well.
So, my parenting became more loving, more understanding, more collaborative and kinder. It changed everything. Toby responded brilliantly and it was like watching magic happen.
Toby’s now 28, he’s incredibly happy, he’s doing so well and things are really good. I now know that it was never about Toby’s behaviour, it was always about trying to find ways to help Toby feel safer and less frightened in a world that offered seems confusing to him.
I now run Newbold Hope, it’s a parent-led organisation devoted to teaching parents and professionals how to move children with anxiety-led behaviour towards happier times.
So far through our work, we know of over 2,000 children who’ve successfully achieved this. We know from research that our present population is significantly over-represented by adults who have ADHD or who have a learning disability or who are autistic. But it doesn’t have to be like this. For decades we’ve been giving parents the wrong advice and then we’ve been blaming them when it goes even more wrong.
If instead we can step in early enough and provide parents with the strategies, the support, the skills and the confidence they need, they really can change the course of their child’s life. Estimates indicate that around a quarter of a million UK families live in constant fear that their child’s anxiety-led behaviour could cause somebody to get badly hurt. But this is not a parental competence issue, far from it.
This group of parents have taught me so much and shown me how much can be achieved with tenacity, true courage, hope and unconditional love. These parents, their parenting skills are already at ninja level and they’ve helped me to realise that all that time long ago, so were mine.
If you see something that doesn’t quite make sense, there may still be a clear logic as to what they’re doing and why they’re doing it. Please don’t judge. Please stay curious. And please keep asking those my questions because that’s how you can help somebody like me feel valued, understood and included. And let’s be honest, isn’t that what the NHS is all about?
