Expert event - challenging behaviour: In October... - Mencap

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Expert event - challenging behaviour

Sarah_Mencap
Sarah_MencapAdministrator
39 Replies

In October, Yvonne Newbold was here to help us take a closer look at challenging behaviour and learning disability.

This topic is now closed, but please do read Yvonne's amazing posts for advice and information about challenging behaviour.

If you want to post more challenging behaviour (or anything else) please just write a new post - healthunlocked.com/mencap/w...

Yvonne is a writer, speaker and trainer who is also the mother to three children, including Toby who is multiply disabled with profound learning disabilities. She is passionate about doing whatever it takes to make things better for children and adults who have a neurodevelopmental condition or disability, as well as for their families.

Find out more about Yvonne:

* yvonnenewbold.com/

* en-gb.facebook.com/TheSENDV...

Many thanks

Sarah

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39 Replies
oldestnewest
crazysquirrel

Excellent idea. this is something that comes up for many families.

1 like
Manyjobs

That’s great how do I message her?

Sarah_Mencap
Sarah_MencapAdministrator
in reply to Manyjobs

Hi Manyjobs

Just pop your question on here and Yvonne will get back to you when she arrives.

Many thanks

Sarah

1 like
Aholidaywouldbenice

Hello Yvonne. I wrote on here last week about how I am feeling on this subject. I wrote this

My 10 year old's behaviour is pretty bad at the moment. I am finding that it is leading to arguments with my partner. He's very soft, and it is always down to me to tell our son off. School have been helpful, but ultimately it is me that has to cope most of the time. I don't think my other half appreciates this. i also don't feel like they support me when they get in. Just having a moan and wondered if anyone else has had this. Feeling a bit down about it all but I am sure I will cope.

Just to add a bit more detail. My son has a mild LD and autism. He is in mainstream school and gets extra support. He is doing very well, but he is increasingly angry at the world. He is also getting bigger which makes it a bit harder when he is having a tantrum. He doesn't have many, and they are usually when we are out and I say no. It is making me a bit nervous about out going as they can be epic. He behaviour at school is much better. Any tips you can share would be great. I am open to ideas. Thanks

2 likes
YvonneNewbold

Hi Aholidaywouldbenice,

I’m so sorry that things seem to be very difficult at the moment for your family, I can understand exactly why you feel a bit down with everything that’s going on.

Without knowing your son, and having a lot more information, I can only try and interpret what might be going on with him from what you’ve told me.

It sounds to me as if your son is finding life really tough at the moment, and his anger and tantrums that you describe are likely to be autistic meltdowns, caused by anxiety. Anxiety as a word doesn’t always describe these episodes well, and it can be easier to think of it in terms of distress, fear and confusion. Often children like your son, with mild learning disabilities and autism, present very well indeed and look as though they are coping with all aspects of life. However, that might not be the case. Autistic children and those with a learning disability may find the world a scary, confusing and distressing place. Children like your son can often struggle in three distinct areas, with communication, with sensory processing and with any unexpected changes, or any alterations to routines.

These things can all mean that a child may spend a lot of time feeling frightened unsafe and insecure. This can then lead to their “fight and flight” response being triggered, which can then result in an autistic meltdown. What can look like anger is more likely to be your son experiencing a state of being completely overwhelmed and his words and actions at that stage will be entirely outside of his own control and not deliberate at all. It’s a child’s way of letting us know that they are beyond overloaded and incredibly distressed. I’ve written about this and you might find it helpful to read about the link between anxiety and a meltdown here.

yvonnenewbold.com/resources...

Due to the fact that it’s not disobedience or misconduct in any way, and it is also entirely outside of the child’s control, the traditional parenting methods simply won’t work. Instead, we need to go with a completely different, almost completely opposite approach.

While all our instincts may be telling us to be stricter, firmer and harsher in the way we parent, the real key to preventing meltdowns is going completely the opposite way. Being calm, kind, loving, compassionate and understanding is what will work to help our children to feel safer in the world, and therefore will eventually help to impact on their behaviour.

It’s interesting that you say his behaviours are more difficult when you are out and about. A lot of our children find going out to be very unpredictable and overwhelming. If he has any sensory processing issues that have yet to be identified, it could be that he is finding crowds of people, the lighting and music in shops, the constant chatter of a shopping centre or strange and unfamiliar smells incredibly hard to cope with.

Another very common cause of difficult behaviour episodes is when a child is told “no” which is something else you mention in your message. The word “no” can sound like a threat to them.

There are lots of ways that you can say “no” without actually using that word that can avoid conflict and confrontation. Things like “that looks like a great idea, let’s put it on our list of things to do”, or “yes, of course you can have ice-cream, but let’s have dinner first”. There are dozens of similar suggestions online if you google it.

At 10, your son is also growing up and may well be becoming more aware that he is different to his peer group. This could well be having a detrimental effect on his self-esteem and self-confidence. Is he happy at school, and does he have friends in his class? Think about anything you can do to make him feel good about himself and proud of who he is. I note that you say that he is doing well at school and only has the difficult behaviour episodes with you at home. This, too, is very common with children like ours. They are very good at holding it all together and masking all day at school, but when they get home they are able to release all that saved up emotion and finally they feel safe enough to let it out. You are his mum, so you are his “safe” person, and that means that he trusts you to let go and let it all out with you.

All behaviour is a form of communication, and he is letting you know through his meltdowns that things aren’t good and that he needs help to feel safer in the world around him at the moment. As my son’s behaviour escalated all those years ago, I thought I’d tried everything but nothing had worked. All I had done though was to be stricter, firmer and more authoritarian with him. I’d gone upwards in parenting much harder, which is the way we are conditioned to believe will work. Back then, I simply didn’t know that there was another direction I could go in. Once I realised that I could become softer, kinder, more collaborative and gentler, things started to fall into place and Toby became much happier and the meltdowns reduced significantly in how often they happen, how long they lasted and how intense they were.

There are lots of things I’ve written or videoed that are available online - I’ll include some links below.

It’s also so hard when a child’s behaviour causes a rift between the parents too, and that’s usually because both parents care so much and are both worried sick about their child and what the future might look like for them. Just at a time when it would really help if mum and dad could come together, support each other, and parent their child collaboratively, so often instead mum and dad aren’t on the same page. That means that both can feel lonely, misunderstood and not heard, which only causes all the negative feelings such as anger, resentment and loneliness to get bigger and cause an even bigger rift. Is there any way that you could start building bridges and establish a pattern of regular and honest chats about how you are each feeling?

None of this is easy, but if it works It can be so worth it.

Lastly, please look after you too. You matter, you’re important, and you deserve to have lovely happy times too. Self-care is something that mums in particular are lousy at doing, but it’s not a luxury, it’s essential. If we fall apart, what happens to our children? Self care doesn’t have to be complicated or time consuming. It can be a cup of tea in the garden, or a stare into space for a couple of minutes while you think nice thoughts or reflect on how you’re feeling. Even three deep, deliberate long slow breaths can be calming and give you a lift.

I do hope things start to improve for you and your lovely family soon. Please never ever give up hope, things can and do get so much better for so many families. I’m sure that there are plenty of very happy days ahead for all of you too.

Very best wishes, Yvonne

LINKS

Short video on why traditional parenting methods don't work with our children facebook.com/TheSENDVCBProj...

This is written for parents whose children have violent and challenging behaviour, the underlying reasons for anxieties and how you can help your son will be very similar indeed, so I think it might be helpful

yvonnenewbold.com/resources...

4 likes
Aholidaywouldbenice

Thank you so much for this Yvonne. I will take some time to go through your suggestions in detail. The links are great. I think you hit the nail on the head when you say that traditional parenting methods won't work. I hadn't really stood back and thought about it like this. Saying 'no' and being strict just makes it so much worse. Apart from being a bit frustrated, I think it is how I thought I should respond, rather than what would work best. I agree about it all being communication too. I am more than happy try this things you suggest. Thanks again

2 likes
YvonneNewbold

Thank you for getting back to me Aholidaywouldbenice, and I'm so pleased that what I was saying resonates with you. Those traditional parenting methods and being strict and saying no is what everyone else expects us to do, and the pressure to conform is immense. It's particularly hard when it feels as if everyone is judging an blaming us for our children's behaviour in the first place - we feel we need to show others that we do know how to be the "perfect" parent, and that we can be very strict and firm and authoritarian. However, what other people think of our parenting doesn't really matter, what counts is being the parent our child needs in that moment. I think you're more than halfway there already, and if you'd like anymore support please think about joining our closed FB group. Take care, Yvonne

1 like
YvonneNewbold

Hi Sarah, thank you so much for inviting me to join Mencap's wonderfully supportive forum next week as a Behaviour Expert.

Children with a learning disability so often experience the world in a different way to other children, and that can impact on the way they behave. The families I work with all have children with an additional need who also have extremely difficult behaviour which can be violent towards others, destructive or extremely controlling.

When a child's behaviour is extreme, so often mum and dad get blamed, shamed and judged, and assumptions are often made that it must be due to the lack of good parenting skills in the family. If this is how you are made to feel please know that this is not your fault, there are reasons why this is happening, and actually, if you're coping with all of this you definitely aren't a failing parent - in fact you are almost certainly one of the most resourceful, patient and highly-skilled parents anyone could hope to meet.

Next week we'll hopefully be able to look at some of the underlying causes and what you can do to help and support your child. I'll also share some of the resources I've written and videoed on this topic.

So how did I get into doing this? I am a mum, and my middle child, Toby, has a severe learning disability and autism as part of a syndrome which is so rare that he is the only known person in the world with it. When he was very little, he was so poorly that he really wasn't expected to survive. For his first six years or so, he spent around three quarters of his life desperately ill in hospital, with me staying with him as a resident parent. Things were very hard, and there were more close calls than I care to remember as he hovered in that no-man's-land between life and death. Against all the odds though, he survived. He's now 25, living in a residential care home less than a mile away from our house. He is still the centre of our family, and he is incredibly happy with a wonderful and very full life.

However, for many years, Toby was a very unhappy child, and being non-verbal, the only way he could express himself was through extreme violence and he was also incredibly destructive. I didn't know how to help him, and things were often terrifying at home, and there were days when I simply didn't know how to keep him and everyone else safe until bedtime. I spoke to everyone I could think of on his team, and nobody seemed to have any answers. Instead I met with incredulity, because Toby was apparently happy and engaged everywhere else. There were no services that could help, nobody seemed to have come across this before, and instead the narrative changed; because it was only happening at home, somehow it must be my fault, my parenting skills, or that he had a desperately unhappy home life. It took 8 years before we finally got a referral to a specialist Learning Disability CAMHS team who could help. For the first time I felt understood and listened to, and the team were fantastic. Together we worked with Toby, and I am incredibly proud of how he responded and was eventually able to leave the very difficult behaviour behind him, and how happy and engaged he is with everyone and everything he does now. However, we can never recapture those awful eight years of my children's childhoods which changed all of us irrevocably.

Shortly after Toby's 18th birthday, I was diagnosed with bi-lateral breast cancer. Two very different and unrelated cancers, one in each breast. I had several months of gruelling treatment including radical surgery, chemotherapy and radiotherapy, and at the end of the treatment I had another scan to check that the treatment had worked. Unfortunately it hadn't, and instead I was told that I had incurable stage 4 cancer. Treatment would continue, but the goalposts had changed. Instead of saving my life, the aim of treatment was now to prolong it. My prognosis was around two years to live. I needed a bucket list, and there was only one thing I wanted to do - to somehow makes things easier and better for the next generation of children like Toby and their families.

The first thing I did was to write a book. I wanted to pass on every single tip trick and strategy that I'd learnt about special needs parenting. It's called "The Special Parent's Handbook" and it became an Amazon #1 bestseller which was something I'd never expected! I started to be asked to speak at conferences all over the country. Then people started asking if I could do training. At the very time I was supposed to be taking things easy and putting my house in order and tying up all the loose ends of my life, instead all these amazing opportunities started coming in! I was supposed to live for 2 more years, and here we are, nearly 7 years later, and although I'm still on cancer treatment and have to live with some side effects including very reduced mobility, I'm still alive, and loving life.

In all the speaking and training I was doing, I very rarely if ever mentioned anything about Toby's previous difficult behaviour. I was still ashamed, I still blamed myself and I didn't want to be judged all over again for it. I also didn't think it was fair on Toby - he is in such a good place that there didn't seem any point in dragging up those difficult times in the past. Then I was invited onto BBC Radio Four's Woman's Hour to take part in a panel discussion about challenging behaviour and children with disabilities. A question was asked, and I couldn't side-step it or answer it any other way than being completely honest. So the first time I ever spoke publicly about our experiences as a family, several thousand people heard what I said.

That day my phone went crazy. Complete strangers were reaching out across social media and email to me, sharing their stories of fear, terror and intense sadness. Hundreds of people. The messages just kept coming in, and I was overwhelmed and horrified at the scale of this issue. I'd always believed it to be very rare, but the numbers of people getting in touch made me realise it wasn't. I was astounded that nearly 15 years after I first asked for help, parents still had nowhere to turn, they were still not being believed, and there were still virtually no services or understanding from staff in front-line services. I couldn't walk away. I had to do something. And so The SEND VCB Project was born in April 2017. SEND VCB = Special Educational Needs and Disabilities, Violent and Challenging Behaviour.

I now run training for parents and professionals about challenging behaviour all over the country, with ambitious plans to roll out the training online so that we can reach more people. There is now a Facebook page and a closed FB group with over 4,000 family members. I've written loads about it and researched everything I can. I realised why there is so little understanding about it among staff working in statutory services. It's because very little research has been carried out into this whole area. Unless there is evidence that a social issue exists nothing will happen to resolve things, because services and staff training are designed to meet identified needs. So I've joined forces with a wonderful team of post-doctorate researchers at Northumbria University, and together with over 100 very courageous parents, we have carried out a large scale qualitative research project into the impact of SEND VCB on family life. We've called the study "Behind Closed Doors", and it will be published in the next few months.

Living with a terminal diagnosis has given me a sense of urgency to want to do as much as I can to help families to develop the skills and the confidence to support their children to move beyond their violence and to be able to look forward to a happy, productive and hopeful future.

Along the way, I've been incredibly lucky to win some wonderful awards, and I also work with NHS England in two roles - I'm a member of The NHS Assembly, and I'm also an Advisory Group Member to their Learning Disability and Autism Team.

However, the greatest reward for me is hearing about another family who have successfully enabled their child to leave the violent behaviour behind them. We now know of several hundred success stories, and every single one makes my day. The very best bit for me though is the way that parents tell me about how things have changed. They rarely mention the violence. Instead, they tell me how wonderful it is because their child is now so much happier.

That's what it's all about. Happy children are seldom violent, and happy children are what every parent whats most of all.

I'm looking forward to getting to know you next week, and I'll do what I can to help. However, I don't have all the answers, but sometimes just talking together about things can make a difference.

Have a great week in the meantime.

All the very best, Yvonne

6 likes
TankG1rl

Wonderful news!! Yvonne has been of great help & support to my family!!

2 likes
YvonneNewbold
YvonneNewboldExpert
in reply to TankG1rl

Thank you TankGirl - that's a lovely thing to say, and it's great to hear that things seem to be better for you all xx

1 like
GreenMum29

Hello Yvonne, like many parents I really struggle when my son becomes verbally and physically aggressive with me. Sometimes it happens when he is dysregulated but at other times he seems calm, clear and deliberate in what he is doing. Yesterday felt like I was living in a war zone in my own home and I feel powerless to change the way we interact. I know it sounds a bit pathetic but I just don't know how I should react in those first few seconds after an outburst. Say something? Keep silent? Stand my ground? Walk away? (Not always an option.) He usually either refuses to discuss it afterwards, or shows no remorse or understanding of anyone else's viewpoint. Where do I start to try to turn things around? He is 11. Thank you.

2 likes
YvonneNewbold
YvonneNewboldExpert
in reply to GreenMum29

Oh Greenmum29, I'm so sorry that things sound as if they are very tough indeed for both you and your son at the moment. Often our children present in ways that seem very cold, calculated and deliberate, but it's nearly always because underneath they are feeling very anxious and right then the world is likely to be feeling unsafe and frightening for him. Frightened people try to make the world safer by seeking to control their environment and the people around them, and it sounds as though this might be what your young lad is trying to do. Please don't feel you're being pathetic in any way whatsoever. These times when things are so difficult and our children's behaviour is so unpredictable can be incredibly frightening for us too, and I so remember those times when I felt completely powerless in very similar situations.

It's very difficult for me to be able to suggest exactly what you should do at the beginning of an episode, because I don't know your son and every child reacts and responds in their own very unique way. So an approach that would work well with one child might be completely the wrong thing to do with another.

However, as a general rule, I would strongly suggest that you stay as quiet and as calm as you possibly can. His brain in those moments is likely to be on overload and he's likely to feel very threatened. When our children become physically and verbally aggressive they are in a state of fight and flight, and they won't be able to process much of what is said to them. Instead, they are likely to feel intensely frightened and under threat, so they don't really take on board that it's mum that they are fighting against, in that moment they feel as if they are fighting for their very survival.

The most important thing of all is safety - ensuring that nobody is hurt. So walking away can be the right thing to do, although that might also make things worse in some situations or with some children.

Stay as quiet as you can, and be very careful not to have an "edge" in your voice if you do talk to him. Sometimes talking in a loud "stage whisper" voice can help because not only is it calming, but it's almost impossible for a whispered voice to carry any emotion that could inadvertently escalate the situation. Keep your body language and facial expressions as neutral as you possibly can - it's so easy in those very tense moments to not realise that your own fists are clenched perhaps, which can give your child the wrong signals and make them feel even more under threat. In those heightened states when a child is in a meltdown, they are often hyper-aware and will notice everything, and interpret it as a threat even when none are intended.

Standing your ground is probably the least helpful option. Do whatever you can to avoid conflict or confrontation. Mostly, meltdowns when they happen just have to run their course, so the priority is to keep everyone safe and not to do anything that is likely to make things worse.

After a meltdown, a child may not remember what actually happened during the episode, or they may be so deeply ashamed that they cannot talk about it. To deflect any intensely painful feelings of shame a child can often try and blame someone else or deny that they had anything to do with it. Always try and remember that it really isn't your child's fault, they are not doing this deliberately, and it happens because they are extremely distressed indeed. So remorse is unlikely, because it really wasn't their fault.

That's the hardest bit to get your head around because it often feels as if everyone is judging and blaming us for our child's behaviour, and expecting us to come down on them like a tonne of bricks every time there are any difficult behaviour incidents. Yet all those traditional parenting methods simply aren't going to work with our children. They need almost the polar opposite approach - kindness, gentleness, understanding and compassion. Think of a child in any other form of distress, say having woken up from a bad dream, or having fallen over and grazed their knee badly? Nobody would ever suggest telling them off, or teaching them a lesson, or giving them a consequence or a sanction for doing either of them, would they? Yet when our child is in an aggressive meltdown, even if they are lashing out and hurting you or destroying properly, they are doing it because they are anxious and distressed, not because they are being naughty or disobedient. So they need a response that acknowledges their distress rather than their behaviour.

The other thing that's hard to accept is that we can't make anybody change against their will. We can persuade, ask, plead, cajole, suggest or even demand, but unless someone else agrees to our requests we can't force them. The only person you can change is you. You can change the way you think about your son's behaviour, the way you respond to him and the way you behave around him, but you can't change him. However, when we change how re respond to situations, often the people around us organically change too, and that's how we start to turn things around with our children.

I run a closed Facebook Group for parents of children who have an additional need and who are also violent. Virtually every parent who has ever been in this situation, me included, always felt that they were the only one, and that it was all their fault. I promise you there are thousands of families coping with these situations, and it absolutely isn't your fault or their fault. It's not our children's fault either.

Through the work I've been doing over the past couple of years or so, we now know of over 400 families who can now tell their own success stories. Their once very violent children have managed to move beyond those times and leave all that aggression in the past. The best part is the way that these families tell their stories, it always centres around how happy their child is now, rather than them talking about the absence of violence. Happy children seldom hurt others or themselves, and that's what can help us as parents start to turn things around. It's often as simple as instead of thinking "how can I make my child behave?" to think along the lines of "how can I make my child happy?"

I've got lots of resources on all of this so I'll add some links at the bottom. I'll also add the link to join the Facebook Group if you'd like to.

Please just know that it doesn't have to be like this for ever. Things can and do change for very many families and there is always hope and light at the end of the tunnel.

Hoping things start moving in the right direction for you and your son very soon.

Take care, Yvonne

This is all about why behaviours happen, and what you can do about it

yvonnenewbold.com/resources...

This one looks at what you can do to turn your child's behaviour around

yvonnenewbold.com/resources...

This is all about the impact of shame on our children

yvonnenewbold.com/resources...

Here's the link to join the Facebook Group if you'd like to

facebook.com/groups/4218392...

2 likes
Tealtiger

Hi Yvonne, great to have this opportunity to ask for your help.

What do you do when you can see a momentous blow-up coming, you know that whatever you do (ie say yes to going on the game console because something will trigger him on it, or say no to going on it - because you know it is not going to help his mood but that's gonna trigger it straightaway, or say maybe later, because that is a strategy that sometimes works, and distraction will be spotted and reacted to) you know that there is going to be an extreme meltdown. Is there anything that can be done to reduce the power of that explosion? It seems to be the result of several things over the previous week building and building, and then several things on that day adding to it. Such an extreme event has only happened twice. Once i saw it coming, but couldn't work out how to avoid it (the gaming situation) This week i didn't, but afterwards i could see all the triggers.

4 likes
YvonneNewbold
YvonneNewboldExpert
in reply to Tealtiger

Hi Tealtiger,

Firstly, huge well done that your able to think back and spot the triggers. That's often the hardest part with our children, and the more you reflect afterwards on what may have caused the difficult episodes, the easier it becomes to start noticing them in time to do something to avert a crisis. It might be a good idea to buy a notebook just to jot down any triggers than you identify, as well as what happened before during and after the meltdown too. It might not make any sense at all to start with, but as time goes by you can often spot patterns and commonalities that you'd never have noticed if you hadn't written them down.

Your question started by asking what can you do to reverse things when your son is already on the brink of a meltdown. Sadly by then it's often too late. It's about working out what the triggers are, and then working with your child to reduce their impact that will over time reduce the frequency, duration and intensity of these tough times.

You also mention the games console and whether to remove it or allow it. I think there are parents all over the country who will understand exactly where you're coming from! Gaming is incredibly important to many of our children, and they can use it to self-regulate their own emotions. It became such an issue with many families that I know that I wrote about it from the perspective of a SEND family, and there may be some ideas in here that may help. yvonnenewbold.com/screen-ti...

I'll also add some other links that might help below, including a link to the closed Facebook Group I run for parents of SEND children who are also sometimes violent towards others. Although you haven't mentioned whether violence is part of the overall picture, I got the feeling that it might be. If so, please think about joining our group where there are over 4,000 other families going through the same thing. Already since I started The SEND VCB Project, over 400 of these families have success stories to tell, and their children are no longer violent.

It's all about preventing the meltdowns, understanding that they come from a place of fear, deep distress and confusion about the world around them, and working with our child to enable them to feel safer, more secure and much happier about themselves and their environment.

You may not realise it, but you've already started to turn things around by identifying those triggers. That's a great start - keep going! It's also great that he's so far only had two of these epic meltdowns - it's so much easier to turn things around that have not yet become established. You'll get there, and there will be happier times for you and your son ahead.

Very best wishes,

Yvonne

This is about the link between anxiety and a meltdown

yvonnenewbold.com/resources...

This is "the basics" - all about why difficult behaviours happen and what you can do to help

yvonnenewbold.com/resources...

This is the link to the FB group

facebook.com/groups/4218392...

2 likes
Sarah_Mencap
Sarah_MencapAdministrator

Thanks for your fabulous questions. Yvonne is here from Monday so watch this space!

2 likes
Pigginbird

Hopefully I will qualify for help in this area. My son is 53, but still 'indulges' in challenging behaviour - usually anger outbursts, accompanied by verbal abuse. However, do you consider constant lying and demanding behaviour as 'challenging'? My son is autistic, dyslexic and has learning difficulties. It was only because we paid for a private assessment that we discovered he was dyslexic and it was not until he was in his late 40's that was he diagnosed as autistic, despite constant enquiries throughout his life as to the cause of his problems. He has not lived at home since he was 22 because of the level of challenging behaviour at that time, but I have always been very much involved in his care and his life and he continues to be very dependent upon me . I love him dearly but I am now worn out with it all and it seems as if he is not now going to be able to make any changes to his behaviour. His present carer is worn out too and I am frightened for his future. He has lived in so many different places over the past 31 years and had so many different carers that it seems as if his options have run out. Such is the state of Social Services that he does not even have regular involvement from them. He is obese and resents exercise and dietary control. Is there any hope?

4 likes
Alouema
Alouema
in reply to Pigginbird

The demanding could be autism, autistic ppl are sometimes seen as selfish. I have so much sympathy for you and your situation, you've been treated poorly throughout.

My brother is a compulsive liar, has improved as he's got older. He's waiting endlessly for an adhd assessment, we read that could be connected?

2 likes
YvonneNewbold
YvonneNewboldExpert
in reply to Pigginbird

Dear Pigginbird,

I'm so sorry to hear how difficult things are for you and your son. It's so hard isn't it for mums in our situation - our children, however old they are, continue to need our help and it must be so worrying for you to have so many concerns about his well-being. It sounds as if you and your son are not being supported adequately, and that's not acceptable. Do you or he have an advocate - someone who can help you and support you in getting a better level of appropriate support around your son? Mencap have a very good helpline, that could be a good starting point to get advice about how to get more robust support in place, including how to access an advocacy service. Here is the link to their helpline page. mencap.org.uk/advice-and-su...

Being diagnosed with autism so late in life, have your son's carers had any training or input into strategies that might help your son be happier and therefore less challenging? There are so many factors that can have a significant impact on autistic people, but if those caring for him aren't aware of how to identify things like sensory processing issues, communication difficulties or how to manage transitions from one activity to the next, they won't be able to support him properly. Your son may well find life very confusing and frightening, and his verbal or angry outbursts are highly likely to be autistic meltdowns over which he will have no control, and he will also find very distressing.

Demanding behaviour and constant lying are almost certainly part of a whole pattern of distress and anxiety, and these behaviours may well have developed over the years as part of his own attempt to feel safer and more secure in the world around him.

It sounds as if he needs more help than he's getting, and you also need help to make that happen. It sounds as if you have had to be strong and cope alone for far too long, and that's not fair and nor is it how things are meant to work in a caring and civilised society.

There is always hope, and you would be amazed at how people can transform their whole outlook in a different environment where their needs are being properly met. Your son deserves this and you deserve to see your son become happier. You can't do this on your own, and it sounds as if he's been pushed from pillar to post with no continuity or care whatsoever.

I hope for both your sakes that there is somewhere welcoming waiting for him that he can one day soon call home, with support workers who understand him and want the best for him so that he is happy and settled. Things can and do change and our children, however old they are, never cease to surprise us sometimes. I so wish both of you a happy ending in all of this, and sending strength and solidarity from one mum to another.

Very best wishes, Yvonne

2 likes
Alouema

My son is autistic & his behaviour is increasingly worse, he has low self esteem, cannot fail EVER and is at risk of permanent exclusion.

One major issue we have is verbal. At home & out he will call ppl fat, lazy, bossy etc. He gets grounded with no tech. Blames it on his asd but has been explained many many times, he is choosing to do this.

At school he shouts that teachers are Fing Bit*ches, Tw*ats, shouts etc. The other kids hear & will obviously react so he's getting plenty of attention from it.

We're struggling to prevent it & school is the main issue. Its much easier to deal with out of school but he's a big lad and sympathy only lasts until a certain age/size.

We're working on thinking thoughts & out loud thoughts, how ppl might feel etc, but most of the time he is actively choosing to do this. He is aware that it's wrong to do it.

Any suggestions?

2 likes
GreenMum29
GreenMum29
in reply to Alouema

Hi Alouema and Yvonne, our son is very similar with his tendency to verbally abuse people when he gets angry / frustrated. He also loses screen time but none of our consequences ever seem to work. It's not "just" the swearing but as you mentioned, name-calling and labelling people as fat, dumb, lazy etc... I find it really upsetting as I know that people are probably judging our parenting and thinking that's how we all speak to each other at home, but it really isn't! It's also linked to the fact that when things go wrong it is always someone else's fault. If he hits me, it's my fault because of what I said / did / didn't do. I can't bear the thought of him becoming an abusive adult but I don't know what to do to help him while he's still a child.

3 likes
YvonneNewbold
YvonneNewboldExpert
in reply to Alouema

Hi Alouema, I'm so sorry to hear how tough things sound at the moment for both you and your son. Verbal abuse in SEND children is much more common than we think, and it's nearly always a reflection of their own anxiety and deep distress, and is almost certainly beyond his conscious control, even though it may not seem that way. A child who is deeply unhappy may say all the very worst things they can think, and it can be their way of trying to tell us how wretched and despairing they are feeling inside themselves. It's very hard, because as GreenMum29 says in her reply to you, it can be incredibly embarrassing for parents, who feel judged and blamed for being bad parents. In truth, nothing could be further from the truth. A parent who is coping with this sort of thing day in and day out is probably the most highly skilled and competent parent of all. The more you focus on the bad language itself, the worse it will probably get because by repeatedly drawing a child's attention to it the more it will be reinforced. Traditional parenting strategies such as confiscating the tech equipment simply won't work either and may make it worse. This is because the underlying cause of this sort of behaviour isn't that a child is being deliberately naughty, it's caused by anxiety, and generally they can't help it. If you can, ignore the language completely, and instead work on his anxiety. I wasn't surprised to read about his low self esteem. This will be tied in some way to his bad language and also to his inability to accept failing. He sounds as if he is really struggling with life at the moment and that he's very unhappy. If you can work on his self-esteem and also reduce his anxiety levels, the bad language may reduce or even stop altogether over time. Trying to tackle it head on is unlikely to work, as you've already found out.

Is he happy and doing well at school? Does he have an EHCP? Are school on-board and supportive to both of you? Could there be an issue at school that hasn't been identified yet? All behaviour is a form of communication and children generally don't behave like this if everything is going well and all their needs are met.

I'll add some links below that might help you get a better idea of what could be causing his anxiety, and also why traditional parenting strategies are unlikely to work with many of our children. Changing our parenting strategies isn't easy, but when it works it's so worth it, and I now know several hundred families who have taken that leap of faith and it's made all the difference.

This issue sadly isn't going to go away overnight, but many children do move on from this sort of language eventually. It can help to translate every insult he calls out to "mum, I'm hurting inside, please help me" - because that's probably nearer the truth than what he's calling out to other people, and when we start seeing behaviour as difficult things they are trying to tell us, it can change the whole dynamic and make everything easier. I hope so for both of you.

Take care, and good luck

Yvonne

This will explain how anxiety can affect our children

yvonnenewbold.com/resources...

Here is a four minute video with 10 tips to reduce anxiety. It was made for parents of children who are violent, but the principles and the reasons are exactly the same.

facebook.com/TheSENDVCBProj...

3 likes
YvonneNewbold

Good morning, it's so great to be here this week, and I'm looking forward to getting to know you and hopefully being able to pass on some ideas that may help your child or family member cope better with life.

When people are coping better they are generally happier, and that then should have a positive impact on how that person behaves. I see that already five people have asked for help with behaviour issues and I'm going to do what I can to get back to each of those questions at some point today.

I'll be popping in and out all day - in fact all week - so please bear with me if I can't reply straight away every time, but I'll do what I can to get through all the questions as soon as I am able to.

.Be back soon!

Yvonne

4 likes
Sarah_Mencap
Sarah_MencapAdministrator

Hi Yvonne

There is post (not on this thread) about challenging behaviour from Laurajackson88

healthunlocked.com/mencap/p...

She says

"Really struggling with 10year son autism/adhd, always masked at school and violent at home until last year when he started meds and things calmed down, until a couple of weeks ago, now hes being restrained most days in school 😕"

Would you be able to have a quick look and see if you have any suggestions?

Many thanks

Sarah

1 like
YvonneNewbold
YvonneNewboldExpert
in reply to Sarah_Mencap

Thanks for signposting me to this one, Sarah, I've replied on the other thread.

2 likes
SimranB

Hi Yvonne, thank you for answering questions! I’m a medical student at King’s College London and I’m interested in improving health services in terms of quality and access for patients with learning disabilities. I recognise that sometimes healthcare isn’t as adaptable and helpful as it should be and I’d really like to help improve that. I was wondering what you felt about how the NHS treats patients with learning disabilities and key areas where you feel there is room for Improvement. Would you suggest somewhere for me to learn more?

Thanks,

Simran

2 likes
YvonneNewbold
YvonneNewboldExpert
in reply to SimranB

Hi Simran, thank you for getting in touch, it's so good to know that there are medical students already aware of the healthcare inequalities relating to children and adults with a learning disability and would like to do something to help. Thank you for caring enough to want to make a diference. There is a lot of work already being done by NHS England, and I've been involved in some of it because I'm a member of the NHS Assembly as well as being on the Advisory Group to NHSE on Learning Disability and Autism. Personally, I feel we need a complete culture shift at grassroots level throughout the NHS with a greater understanding of the importance of personalised care and being willing to offer the flexibility that would make person centred care really work. So often, a person with a learning disability is expected to fit into way that health care and hospitals work, and very few reasonable adjustments are made as a matter of course. There are some absolutely fantastic individuals who have often gone far more that the extra mile for us, but it shouldn't be so dependent on who your care happens to be assigned to on any particular day. Reasonable adjustments can be very low-cost or even no-cost - it's all about connecting on a human level, being patient and allowing lots of time to process, treating the person as an equal and being curious and interested enough to want to understand what makes each person tick. The most effective reasonable adjustment that any health care professional can possibly make starts with a change in their own heart and mind. Have you read the LeDeR reviews, and the CIPOLD Report? Mencap's "Death by Indifference" Report is also well worth a read. So many people with a learning disability just seem to slip through the net, and there are an average of 3 preventable deaths every single day from within the Learning Disability Community. That is completely unacceptable and we all need to work together to get this changed as soon as we possibly can

Hope this helps, very best wishes,

Yvonne

1 like
SimranB

Dear Yvonne,

Thank you so much for your reply. I’m very grateful. I’ll certainly look into the resources you suggested and also look into the work NHS England is doing.

I’m at King’s College London and, unfortunately, we have no teaching on how to adjust our style of practise for patients with learning disabilities. I‘d like to change this because it’s much easier for healthcare workers to adapt their style once they’re trained how from the start. This year, I am working with the Healthcare Leadership Academy and my aim is to make a series of disability awareness videos for healthcare professionals. I’d like them to have practical advice about how to alter their style for patients with learning disabilities so that they feel more confident when presented with that situation, rather than feeling nervous and therefore being too inflexible to help.

Would you be able to call to discuss some of the more practical changes that individual clinicians can make (as opposed to systemic NHS changes)? And are there any resources you’d recommend for this as well?

Thanks,

Simran

2 likes
YvonneNewbold
YvonneNewboldExpert
in reply to SimranB

Hi Simran, it's interesting that you're at Kings - one of the very best examples of NHS care we've consistently had with Toby is from Kings Dental Hospital, which is on the same site that you are. I wrote about one excellent experience we had a couple of years ago and I'll share the link below. I've also done a lot of talks to NHS clinicians at seminars and conferences about how it's the small things that make the biggest difference, and how it's mostly about individual staff members bringing their heart to work, being open and curious and then taking trying to connect with the vulnerable patient. Yesterday, Toby had to have a general anaesthetic. The person who came to collect him and push his bed all the way to theatre arrived with a huge and infectious smile, and got right down on Toby's cognitive level, gained his trust in seconds, and the two of them laughed all the way through the long hospital corridors to theatre. Toby was still laughing as the anaesthetic took hold. That one man made all the difference to what might otherwise have been an incredibly frightening, distressing and traumatic time. There's also a video of a talk I gave at several NHSE conferences around the country on exactly this topic - I'll share a link to that too below. I live in South London too, so if Kings College Hospital are ever planning a training event for staff in patient safety for people with a learning disability, please feel free to pass my name on. If you'd like to contact me so we could arrange a chat on the phone, my email is yvonne@yvonnenewbold. com I'll look forward to maybe hearing from you, and hope you have a lovely weekend. All the best, Yvonne

Here's the article about Kings Dentistry Service, and I believe they still have a copy on their own website too!

yvonnenewbold.com/our-nhs-l...

Conference talk about hospital care for people with a learning disability

SimranB

Thank you so much for your reply and sharing that article! It’s really encouraging to hear about Toby’s positive experience at King’s.

I’ll definitely pass your name on if I hear about about any training days for people with a learning disability.

I’ve sent you an email with some other questions as I’d love to talk more.

Thanks so much,

Simran

1 like
Beeboo81

Hi you are just brilliant in explaining everything so Thank you for doing what your doing 😊

My question is when my 10yr old girl being assessed for asd is in the mist of a meltdown attacking me usually or sometimes her younger sister I need to restrain her as she follows me round and I'm not sure what else to do to stop her?

Also my autistic 11yr old son thinks I am hurting her so shouts at me to leave her alone which then scares my 4yr old daughter so everything just seems a little crazy till her melt down ceases which are quiet frequent lately . I'm a single mum so do really struggle at times.

My daughter will not engage with CAMHS or any counselling refuses to do any breathing exercises as I find with her PDA strategies work best but don't know how to get her to use anxiety calming techniques with her refusing I'm at a loss sometimes. Hope I haven't babbled on too much

3 likes
YvonneNewbold
YvonneNewboldExpert
in reply to Beeboo81

Hi Beeboo81,

Thank you for your very kind words about what I've written in this forum so far. I'm so sorry to read how difficult things are at home, it's so hard being a single parent at the best of times, but when our children have additional needs it really is so much tougher, and everything is down to you to sort out. It's also very hard when the struggles of one child then impacts on how another child reacts. However, on one level, your son sounds lovely to be so concerned for his sister during those times, but it sounds as though you are having a very stressful time with all three becoming distressed at exactly the same moment.

It's good that your daughter is being assessed for ASD - the meltdowns that you describe where she is attacking you are very common in children with a whole range of neuro-developmental conditions, including Autism, ADHD, PDA and a Learning Disability. It's not actually the condition itself which is causing these violent episodes, it's the anxiety that this group of children are much more prone to that is the most likely underlying cause. During these episodes she is likely to be experiencing a state of fight and flight, it's how we respond in times of intense stress when we feel frightened, confused and very distressed.

With the right approach, over time it is possible to help her cope better in her immediate environment and to enable her anxiety levels to become much lower, which will then help her to become happier and much more settled. It’s about identifying what is causing her to become so anxious, and then finding ways to manage the source of those anxieties before the meltdown happens. Once it’s in full-flow, there is often very little you can do other than to try and keep everyone safe.

In autistic children anxiety is often caused by one or more of these three factors.

Firstly, communication and not understanding or being able to process what’s being said quickly enough, or not being able to express their own needs adequately.

Secondly sensory processing difficulties can cause a lot of anxiety and distress to children. If you can request that a Sensory Integration Assessment is carried out by a specialist Occupational Therapist as part of her overall autism assessment, that could be really helpful; although in many areas this isn’t available. If not, there are some good books that you can use as a parent to get some idea of what your own child’s sensory profile is likely to be, and that can help too. I'll add a title of one below that has been recommended to me by several parents. Sensory issues are very easy to miss, and they can cause a lot of the extreme behaviour that you’re seeing.

Lastly, changes in routine or transitioning from one activity to another can be incredibly hard for some autistic children, and that can also lead to significantly higher levels of anxiety too.

You also ask if there’s anything else you could be doing apart from restraining your daughter. This is a very difficult and emotive issue indeed. When a child is in a meltdown, they are having an incredibly difficult time emotionally, and are likely to be very frightened and highly sensitive. To be restrained when this happens is likely to worsen your child’s fears and that can then escalate the situation instead of calming it down. Ideally it would be good to work on lowering anxieties so that meltdowns lessen in frequency, duration and intensity, so that there is no need to restrain.

There is another issue concerning the word “restraint” in that it can give the wrong impression as to what a parent is actually doing, which can then leave them vulnerable to accusations of abuse.

Obviously as parents, we have a responsibility to keep our children safe and to prevent them harming themselves and others. However, are you really “restraining”, or would a better description be something along the lines of “I was holding my child back so that she was unable to kick other members of the family”?

To many professionals who are involved with children, the word "restraint" generally means something much more specific, and it can ring alarm bells when a parent uses this word to describe what they are doing to keep everyone safe at home. Staff who are permitted to restrain children in settings like schools will have been highly trained in safe restraining practices and they will be restraining a child as part of a team. Safety is paramount and the training will have focused on avoiding doing anything that might affect a child's breathing. Trained staff working together will be doing it in a way that is both accountable and transparent, and everything will be documented and recorded, so that there are checks and balances in place in a way that just isn't possible to replicate at home when a parent is doing it alone and untrained.

Restraining a child in any circumstances, or physically holding them back, should only ever be used in the most severe and extreme situations when there are real risks of serious injury. Using restraint type procedures long-term will make things worse, not better. So it is best if at all possible to avoid restraining a child at home. However, that means expanding your toolbox of other strategies to use instead, and of course, that will take time. Try and see it as something you’re working towards, and I’m going to add a lot of links below that might help you get there.

When violent behaviour first develops in a child, parents are generally in shock, frightened and feel out of their depth. It’s a very understandable reaction to want to try and stop any lashing out as quickly and as effectively as we can, and that’s why parents so often resort to physically holding a child back. In the early days, though, it’s very hard to know what else you can do, and very many parents in this situation, including me in the early days, will have tried to hold their child still. Right now, you are doing the very best you can to keep everyone safe and with the very best intentions and that is what makes you a wonderful mum.

I run a support group on Facebook for parents of children with additional needs who are also violent. There are over 4,000 families supporting each other with understanding and never any judgement. Together we’re learning from each other how to do things better. Already there are over 400 families in the group who have managed to help their children move beyond their violent episodes, and what really stands out in conversations I have with them when things are better is the way that they describe their child. “Happy” is the word they use the most because happy children seldom hurt other people. If you’d like to join the group you’d be more than welcome. Here’s the link. facebook.com/groups/4218392...

As far as your daughter is concerned regarding breathing techniques or engaging with CAMHS, she may well be perceiving them both as demands that are just too hard for her to be able to meet right now. I think the priority is finding ways to reduce her anxiety, lessen the meltdowns, and hopefully, once she is calmer and happier, you can then try again with things that might actually help her learn to self-regulate.

You are doing a great job under very difficult circumstances, and you will get there, it’s not always going to be as hard as it is now. Hoping things get better very quickly,

Very best wishes,

Yvonne

This is a link to several videos I've made, each one dealing with a different aspect of how to support a child who is violent and who also has additional needs. They are all very short, and so far there are eight of them, but there are two more still to be published in this series.

facebook.com/pg/TheSENDVCBP...

Here's the link to what I wrote about things parents should think about before restraining a child

yvonnenewbold.com/resources...

This is the "basics" post - everything you need to know about why extreme behaviour can happen and how you can help

yvonnenewbold.com/resources...

This helps to explain what the link is between anxiety and meltdown

yvonnenewbold.com/resources...

A book that will explain more about sensory issues. The Out-of-Sync Child

by Carol Stock Kranowitz

1 like
Sarah_Mencap
Sarah_MencapAdministrator

Hi again Yvonne

Here is another post where Kamijak raises some issues about challenging behaviour. Please could you have a look when you have a chance?

healthunlocked.com/mencap/p...

Many thanks

Sarah

YvonneNewbold
YvonneNewboldExpert
in reply to Sarah_Mencap

Thanks Sarah, I've popped over to the other page and replied to Kamijak - thanks for letting me know

1 like
Sarah_Mencap
Sarah_MencapAdministrator

Hi again. I can see that you have replied to Beeboo81 above but here is a different post from them

healthunlocked.com/mencap/p...

Please could you have a look and reply if you think you haven't already covered it.

Thanks so much

Sarah

Tiinaa

Hello Yvonne, just wanted to say, that I found your Facebook page a couple of years ago, when we were having particularly bad violent meltdowns. Things are much better generally now, not perfect but much better. We now have a much better understanding of our daughter needs, emotionally and sensory, we have made a positive behaviour program that changes regularly as her needs change. She is generally more able to self regulate and ask for her sensory needs to be met . This is hard work on our part to keep her feeling safe and happy. But well worth all the effort.

All thanks to you and your page, thankyou Yvonne, you have changed our life for the better, and we will continue to put into practice all the things we have learned along the way.

2 likes
YvonneNewbold
YvonneNewboldExpert
in reply to Tiinaa

Hi Tinaa, thank you so much for your lovely post, and you've just made my evening, thank you! I am so pleased that things are so much better and easier now, it's stories like your that just make my heart swell. All I did though was to share a few ideas and to point you in the direction of some suggestions. You are the ones who have put in all the hard work and made this happen. You and your daughter are the real stars here. Huge congratulations and I so hope things keep going from strength to strength. Take care, Yvonne

1 like
Sarah_Mencap
Sarah_MencapAdministrator

hello YvonneNewbold

thank you for all your hard work this week. There are such a lot of posts on this subject - your input has been invaluable.

Please could you have a look at this post when you have a chance? - healthunlocked.com/mencap/p...

thank you

Sarah

1 like
YvonneNewbold
YvonneNewboldExpert
in reply to Sarah_Mencap

Hi Sarah, it's been an absolute pleasure, and I'm so pleased that I've been able to help a little. It's been lovely to "meet" the parents and families in this forum, and everyone has made me feel so welcome and been so lovely. Thank you so much for inviting me to be on your "Expert" team this week, I've had a great time! Very best wishes, and thanks once again, Yvonne

1 like
Sarah_Mencap
Sarah_MencapAdministrator

Many thanks to everyone who has joined in, or read, this conversation. Also a huge thank you to YvonneNewbold for such amazing posts and advice.

This topic is now closed.

If you want to post more challenging behaviour (or anything else) please just write a new post - healthunlocked.com/mencap/w...

Next month we have an expert event all about working and employment. More details to follow soon.

Bye for now.

Sarah

1 like
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