Stress – is it real?
by Alan Cooklin, Psychiatrist and Kidstime Founder
It is great that the theme for this year’s Mental Health Awareness Week – sponsored by the Mental Health Foundation – is stress; because it’s so universal isn’t it? Or is it and has the word become so overused and hackneyed that it has almost lost its meaning ? After all we all have stress don’t we ? Business men have stressful lives – even the super-rich do. It is stressful to travel on the underground in rush hour. We have all had stress at work, with little children, with adolescents and so on.
But as Dympna Cunnane, the CEO of the Kidstime Foundation, has pointed out there are some meaningful definitions of stress which really do matter – such as Sir Michael Marmot’s who has identified the holy trinity of severe stress as high demands, low control, and low support.
So consider this overused and abused word. It is often used in 3 different ways; as a verb ‘to stress someone ‘ or to be ‘stressed’ , as a noun ‘ my stress gave me anxiety attacks’, or even as the end product ‘ I’ve got an attack of stress’. Funny that it was originally an engineering word; metals or other material are ‘stressed’, meaning they are under tension – and at some point they will either bend too much or break. Actually it may not be so bad as an analogy – the things which stress us leave us in a state of tension. It can be mild and short lived or intense and continuous, and there’s an important difference. We all know that the feeling of tension means that one cant relax, cant enjoy things, have to stay too alert, and often cant think too clearly and may be distracted in ways that can be dangerous – for example if you are driving.
I – and we in the Kidstime Foundation – work to support children and young people who describe often constant tension when their parents suffer a mental illness. So when I heard about this year’s mental health awareness week’s theme I thought I must find out some more about how these children and young people experience and think about stress. So on May 2nd in preparation I met with 4 young people aged between 13 and 20 + years old, all of whom had experienced stress as a result of the impact of growing up with a parent with mental illness. We addressed three questions: Firstly what did they think stress meant: secondly was there a kind of stress from living with a parent who suffered from mental illness, and thirdly was there something different about that stress or specific to the effects of a parent’s mental illness on themselves ?
The discussion took off a pace. They all agreed that the effect was to be constantly worrying about something, that there could even be positive and negative kinds of stress and that stress meant different things to different people. The older young people pointed out that what mattered was how ‘you relate to the problems you are facing’, as that could be with physical symptoms, extreme emotions, or extreme behaviour. They then worked hard to identify ways of coping with stress that were less harmful to them and others. But they all agreed that a parent’s mental illness was a special kind of stress and that it was worse – worse because of the sense of responsibility they felt, because they were confused by what their parents did and said, and because they were told little or nothing by professionals, and also a specific aspect : because ‘ it (the parent’s state ) is constantly changing, and you are always having to adapt’. In addition they all agreed that the impact of a parent having mental illness meant that most often they had not had anyone who could model for them and show them positive ways to manage stress. The youngest there felt that ‘ Cos my mum has looked after me for all these years, I felt that I must give something back. I didn’t feel that I could let anyone else care for her as that would be letting her down’.
But one young person – Georgia (now aged 18, and her real name by her choice) – described the experience most poignantly. She said ‘ For me I have a lot of physical symptoms, headaches and my periods totally out of whack. I am quite a stiff person. I don’t like it when people touch me because of how stressed I am constantly, and I don’t like unexpected things. When you are as stressed as I am for as long as I have been your whole manner changes. Its never ending for me the stress about her mental illness, as I am having to constantly adapt. It was a small part – no actually a big part – of why I gave up my A levels. I had no backup plan if it failed, so I needed to get a job so I could support my mum financially as well as emotionally’.
What these young people had both told me and shown me was very clear, but still I wanted to know what really was the critical and different stress. I knew that a parent’s mental illness could mean that life was intensely insecure – emotionally and financially – that they all felt guilt and responsibility, and believed that their own lives must take second place to caring for their parent, but I also learnt something that was knew and not talked about in professional and media discussions. That is that they feel they must subjugate their own thoughts and at times beliefs because they are so desperate to maintain emotional contact with their ill parent – that is join the ‘ill’ thinking. As Georgia put it ‘My Mum’s view – partly as a result of her bad life experiences – is that everything is dangerous; friends are dangerous, the internet is dangerous, everything is. And I cant always argue with her or she just says ‘ You’re disagreeing with me cos you think its my Bipolar; you think I’m stupid because I’m Bipolar’. ‘When I was younger all those ideas did seep into my mind. Now I’m beginning to learn to trust people and to try to always see the other side before I jump to a conclusion’.
All these young people have found ways to manage stress, and increasingly more positive ways so that they are making a success of their lives, but there is a message for all of us. They need friends and supporters – not necessarily therapists – to help them think, to re-discover their own minds so that their stress can become positive.
Stress and how our workshops can offer respite
We all need some stress in order to get us out of bed in the morning and life is full of opportunities to experience stress, from the demands of school, to friendships and sometimes the home environment. What is really difficult is when the stresses pile up and there is nowhere to hide and nobody to talk to. This is the situation of many children who have a parent with a mental illness.
Sir Michael Marmot has identified the holy trinity of stress, high demands, low control and low support. Children of parents with a mental illness are often in positions where they take on an adult role in relation to their ill parent (highly demanding) and because of the stigma they rarely disclose this to anyone (low support) and they have no control over their home situation (little decision making power). Marmot and his team found that this combination of circumstances resulted in poor health generally. The research found that social support was a key protective factor.
In our work with schools and families we find that the experience of being able to talk about mental illness as an illness is a relief and the support they get from being with others in the same situation offers the whole family the opportunity to relax and open up about their fears and find ways to parent well despite their illness. They regain some control because they can think about their situation and open up about it as a family, this way they can plan for the difficult times and find the support they need. Many families tell us that the Kidstime Workshop is the only place where they don’t feel judged and where they have control over their ‘treatment’, they are asked to think about what would help them rather than be told what would help, in this way they can make their own decisions with the support of the group. The children enjoy having fun and being able to relax as their parents are safe. One child told us that she did not realise at first that she was at a workshop for families with mental illness, she enjoyed the games and only later realised that they were attending a workshop because her father had a mental illness.
The Kidstime way of working with families and children is based on offering support, having fun and being able to talk about mental illness in a stigma free environment. The drama work with children offers the opportunity for the children to safely think about their home situation, to ask questions through creating characters and role playing. When the mini dramas are recorded and played back to the parents there is a sense of joy and pride despite the content which is often tragic and troubled. Parents are amazed that the children know so much and worry so much.
One parent recently told us that the first workshop had such a positive impact on her children, she did not recognise them on the way home.
Toxic stress vs chronic stress – what is the difference?
These are very scary words, what do they mean?
Let’s take them one at a time, stress is the tension between our capabilities and the demands on us, like an elastic band stretched between two poles. When the tension gets too stretched it will snap or break. We must either reduce the demands or increase the capabilities or both.
This word comes from the medical world and indicates long term illness.
Chronic stress, or a constant stress experienced over a prolonged period of time, can contribute to long-term problems for heart and blood vessels. Examples of life events related to chronic psychological stress include serious life events like loss of a loved one, being bullied, illness, accidents or a trauma such as a car accident or other forms of physical assault. Social isolation and resulting feelings of low self-worth also give rise to chronic stress and can lead to increased blood pressure, which predisposes a person to getting a stroke. You can, however do something to relieve this kind of long term stress by, for example
Find ways to have fun. Laughter has been found to lower levels of stress hormones, reduce inflammation in the arteries, and increase “good” HDL cholesterol.
Meditation or mindfulness practice can help to regain a sense of proportion when things seem overwhelming. There are many apps such as Head Space which are very useful.
Exercise is often the last thing you want to do when you are stressed but it is one of the best de-stressors available and does not need to cost anything, a daily run or walk is enough to activate the body’s autonomic nervous system.
Reduce your use of social media or gaming, unplug for a few hours, especially in the evening and at bedtime
Get a good sleep, you need 8 hours and perhaps more when you are a teenager. Make your bedroom device-free, including computers and TV.
Find ways to take the edge off your stress that suit your personality and lifestyle, everyone has different ways of relaxing, some healthier than others, think about healthy ways to relax and do what brings you joy.
The consistent and ongoing increase in heart rate, and the elevated levels of stress hormones and of blood pressure, can take a toll on the body.
Toxic is the scariest word of these words and comes from the ACE (Adverse Childhood Experiences) research. The reason for using toxic is because this kind of stress alters the developing brain and gives rise to diseases, both physical and mental. Stress hormones such as cortisol and adrenaline shut down areas of the brain as a defence against uncontrollable feelings related to fear.
Toxic stress is of a different order to ordinary stress in that it is persistent and systemic, the child has no control over their situation and nothing they can do will make a difference, they are powerless to change the situation and it is a more or less permanent situation. If there is something we can do to alleviate the situation, then it’s not considered toxic. In addition, the stress occurs early in life when the brain and mind is developing and it therefore becomes part of the pattern of functioning of the person and is outside of their consciousness, it creates a world view based on fear and threat. In this way, the child grows up with a heightened sense of threat, a hyper alertness which gives rise to reactions that are out of proportion to the threat, anger becomes rage and fear becomes terror.
There are 10 ACES, parental mental illness is one of the ten, we would suggest that it lies behind many of the 10, for example parental conflict, loss and separation, encounters with the law, substance misuse etc. Parental mental illness is one of the ACEs that gets least attention and therefore is less understood and supported. This is because of the stigma around mental illness which we still have embedded in our society.
To help children develop their capacity for dealing with stress we must think about the environment in which they grow and develop and we should support them. This means that the adults who work with children and young people need to work together to prevent stress becoming toxic and we should think about education and social space in this light. Children and young people need to develop their social skills and capacity for trust in relationships. This will not happen if we continue to focus on treating children in isolation, fixing problems rather than creating healthy environments.
The media and mental illness – reinforcing stigma and shame
Kidstime CEO, Dympna writes about how the media portrayal of mental illness can reinforce the perception that mental illness is the cause and not the symptom of many issues we face in society.
We hear a lot about knife crime and violence among young people but we rarely ask what might be the underlying problem as a system level, rather than an individual level.
The violent acts of shooting in schools in the US or on the streets of London are often attributed to mental health issues and this may indeed be true but the mental health is not in itself the cause, but the symptom of something wrong in our society. The statistics do show an increase in mental health problems or at least there is an increased awareness of how much mental distress there is in all sections of society, young and old. I would argue that mental illness is not the cause of violence but that a culture of violence is at the root of mental illness, thus the cycle continues, violence in the home and in the media create a culture in which fear is a dominant factor.
Mental illness has many causes, genetic disposition, early childhood experience, family circumstances, traumatic life experiences and poverty. The social determinants of health are well known, the lower down you are on the socio-economic ladder, the more likely you are to suffer ill-health, both mental and physical. WE know from ACE (Adverse Childhood Experiences) research that stress in infancy and childhood takes a life-long toll on health. Toxic stress (sustained and systematic) has an effect on our brains, leading to problems with attachment, relationships, cognition, educational attainment and economic success. Many children live in extremely stressful environments and cope as best they can, sometimes in ways that are detrimental to themselves and to society. We are failing our children because we are not investing in creating safer environments in which all or most children can grow up without threat, can develop into adults who have the luxury of being able to explore, play, create, think and contribute to the society which nurtured them.
We seem to invest in illness rather than health, by waiting until a problem arises to provide help, which is usually too late as too much damage has been done by the time the symptoms show themselves. WE need to invest in children and young people as a public health issue, preventing rather than treating mental illness. This will reduce the need for children to find bad ways of protecting themselves and it will create a safer society for everyone, adults and children.
Many areas of public policy and health provision are thinking about the family as the first and most influential environment in which people are shaped and this is absolutely right, however we are still reluctant to support families who are struggling, preferring to treat the problems that arise when things have gone wrong. Most therapeutic work is done at the individual level, not at the level of the system or the environment. WE like to count individual actions, beneficiaries, patients and cost their care accordingly, this is flawed as it ignores the most important component of illness and distress, the places that we live, whether this is the family, the school, the street, wider society.
One of the most hidden and stressful situations a child will have to cope with is parental mental illness and its consequences. The Children’s Society (Good Childhood Report, 2017) found that there are 1.65 million young people (aged 10-17 years) living with a parent/carer with depression/anxiety. Furthermore they found that parental depression or anxiety, on average clustered with six other major challenges in the family. These challenges were most likely to be homelessness and exposure to domestic violence. Children in families with a parent with depression or anxiety were found to have demonstrably lower well-being. Most of these children are vulnerable to dangerous and negative experiences because they are less able to protect themselves and have less self confidence which lends itself to social isolation and predators who target them. Childhood trauma is a feature of the majority of young people who fall foul of the authorities in different ways and as they go through life the trauma piles up. Exclusion from school may be a trigger which pushes these young people over the edge where they have nothing left to lose.
A WHO review stated: “Children with a parent who has a mental illness or substance use disorder are placed at high risk of experiencing family discord and psychiatric problems. The intergenerational transfer of mental disorder is the result of interactions between genetic, biological and social risk factors occurring as early as pregnancy and infancy. Rubovits work in this area has found that children and young people of parents with a mental illness have a 70% chance of developing mental health problems whilst young, with 40% requiring treatment by the age of 20. It also found that these children experience high levels of social isolation, stigmatisation, fear and shame.
This is not to say that parental mental illness is an excuse or reason for violent behaviour and in most cases these children are overly compliant rather than problematic, nevertheless they find themselves on the outside, struggling alone with the hidden trauma, which they do not understand and which leads to many different kinds of self-destructive behaviours. When we feel ‘cast out’ we lose one of the most important protections which we need for healthy psychological functioning, the feeling of belonging and being valued.
Children and young people mostly carry knives and join gangs for protection and because they feel that they don’t matter, that the rules are not made to protect them but to protect others who have more material wealth which they need to protect. When I did my clinical training in a psychiatric hospital I met a young man there to took it upon himself to tell me that the rules were not made for him, they were made to protect me from him! Why should he obey the rules when the whole system excludes him and his experience of life is one of being marginalised and even despised. He told me that ‘in here’ (the hospital) I was in charge but ‘out there’ (the street) he was in charge because he could intimidate me with guns and knives. The street belonged to him and he could own it with his threat and lack of interest in society or its rules. I learned a lot from him and it made perfect sense if I thought about things using his logic.
Kidstime Workshop Visit
Radhika Holmström visited a Kidstime workshop for the first time this February. She gives us some of her first impressions.
For me, visiting my first Kidstime workshop in February 2018, the thing that struck me most was the sheer honesty with which the parents talked about their situation, and their concerns for their children.
It was a fairly usual session: a relatively small group of parents, children and teenagers – most of whom knew each other well, and clearly got a great deal out of meeting regularly and sharing their experiences. At the same time, everyone was strikingly friendly towards me, a newcomer – I didn’t feel in any way excluded. The first half-hour or so was a bustle of children running around madly, the slow organisation into ice-breaker games (“what do you find it hard to talk about?” “Money,” I admitted, rather to my own surprise in front of this group of strangers) and then listening to two of the facilitators talking frankly about their own family history.
And so to the divided sessions. I sat and listened to parents talking about their worries for their children, and how the situation at home had affected their children, and how they were trying different things but weren’t sure exactly what to do. It’s not easy to talk about things like that – you’re admitting your own vulnerabilities and indeed the problems you have with parenting – and yet they did it, and nobody judged, and everyone joined in. Some people suggested their ideas for strategies, and others opened up to talk about their own worries and concerns. One or two flagged up other local sources of support for children and young people affected by parental mental illness. Along the way, people remarked that a couple of children were clearly finding life a lot easier recently, and their parents talked about what had worked. And the parents who had started the conversation took up a couple of the ideas for strategies in handling their own children, saying they’d definitely give them a go and could see how they’d work very well.
After that, it was back to pizza (“very important, the pizza,” several people told me) and the video the children had made. (I felt by now I knew them quite well – which is pretty extraordinary given I’d never seen them till a couple of hours before.) It wasn’t a slick stage-school production, but a more important glimpse into their feelings. Nobody tried to pretend that everything was rosy – quite the opposite; but there was also a real sense that everyone – parents and professionals alike – wanted to do their best to help and support these children and teenagers.
I left to catch my train across on the other side of London, and stood on the station platform thinking about the families I’d met. I’d been surprised by how friendly and how open they were. I’d been impressed, too, by how much they clearly got from these regular sessions in a small community room tucked away in a London side-street. I wondered how those parenting strategies will work (and indeed if they might be useful in my own parenting). And I hoped that they’ll be able to go on meeting, and that those parents, children and teenagers will go on being able to feel they have support.
This workshop like several others will run out of funds in April due to cuts and lack of support from commissioners – perhaps due to lack of knowledge about the fact that it exists and how important it is to these families, a lifeline in fact.
Response to The Guardian Letter: Parental conflict and children’s mental health
We read this Letter to the Guardian recently with interest. Reflecting on the points raised, we have written our thoughts on the issues the article raises as it resonates with us strongly:
Serious and sustained parental conflict often arises when there is a parent or parents with mental health problems. We know that parental / home environment has a big and lifelong impact on children and young people’s mental and physical wellbeing. Children see and hear more than parents think and they worry more than we know about the welfare of their parents. Many children are anxious and hyper-vigilant due to stress in the family.
Interestingly the recent announcement that violence / assault inside the home receives more severe punishment than that of violence outside the home shows what happens behind closed doors has an impact on society as whole and this cultural shift in thinking is significant.
We need to support families to help them be the parents they want to be. Most parents want to do the best for their children but circumstances work against them sometimes. We know too that children do not want to be singled out for special ‘help’ and neither do families as this stigmatises them and adds to their isolation and low self-worth.
Early intervention to support the children as their brain develops, to reduce the stress and offer positive ways of coping, are more likely to be successful than waiting for the children to become patients.
If we take a universal approach and re-think how much environment either causes stress or relieves it, then we can begin to work with the systems and professionals who support our children.
A message to young people and their parents for Children’s Mental Health Week.
The theme of this year’s children’s mental health week is ‘Being Ourselves’. Well that’s an obvious one isn’t it? Who could disagree with that? When you’re not sure what to do or say; it’s reassuring, even soothing, isn’t it – ‘Just be yourself’ – sorted ? Well maybe, but maybe not. Do we all know exactly which person we should be ? Is there a nice clear icon, image or person that I can just say is me, and from that follow them and how they behave? Maybe not.
Truth is we all adapt our behaviour, what and how we say things, and sometimes even how we think and feel, to the different people we are with, and especially to the different contexts; friends, others of our same age, peers in school, clubs and just people around, parents, teachers, other adults, people we are in a relationship with, work bosses and so on. That is normal and expected.
So does that mean that we are different people in all these places and contexts, or does it just mean that anyone has different sides they show in different places and to different people? If it is that then how do we know which to show when?
Whilst many will be able to know how to respond to different situations, it can be a problem if we feel very unsure about ourselves, very unconfident in being able to say what ‘I am like’, or even rather negative about what you are like. Then, when we have to play different ‘parts’ with different people, it can sometimes feel as though we are not being genuine, acting, being a fraud – when it isn’t really. It’s just that we can’t find a nice reassuring voice inside to remind us ‘It’s all genuinely me’.
So how do we find a nice reassuring voice that says ‘that’s me’. Some people might think that to really ‘be yourself’ could mean cutting yourself off from too much effects of other people, staying away from people who affect how you feel or behave, and perhaps even ‘locking’ yourself away from friends at home. But it does not work like that.
What helps us to feel confident and more sure about ourselves, so that we can trust that were are in fact ‘being ourselves’, is to be and do more with other people. For young people that can be with adults or people of their own age. It can be great to talk, but that is not the only thing. Doing things which are fun or help us to feel some achievement; sports, dance, music, drama, and all kinds of activities with others, can help.
However it’s not just what you do that helps you to ‘feel yourself’; it’s also what you mentally do – that is what you do in your head – with what you do. So the other thing we have to learn to do is to ‘listen’ to our own ideas, thoughts, and feelings, and don’t let these get wiped out, or washed away, by other people – whether these people are parents, teachers, professional helpers, friends or school mates, husbands or wives, or even bosses.
In some ways our own mind; our own ability to think things out in a way that also fits what we feel, is our most valued possession. For a child who is developing that ability, it is helped by parents being there and available, supportive and warm, but not intruding too much on the child trying to work things out for him or herself.
When the child believes that one or both parents are not too secure themselves, it can be more difficult for the child to focus on his or her own mind. That can happen when there is family break up, violence, alcohol or drugs, major illness in the family or major threats to the family –from bad housing, immigration problems, parents losing their job. It can particularly happen when a parent has a mental illness, and that is for three main reasons:
- The child may not believe that the parents or the family are safe and secure
- The child may feel he or she has lost the parent from being there – emotionally – and has lost the supportive and warm person he or she needs to help his or her mind to grow.
- The child may feel that he or she has to stay close and involved with the parent’s mind, both because that mind is worrying and because they feel that maybe they can help it to be stronger.
The last of these three can be a particular problem when you are growing up for two reason;
- A child’s attempt to help may not work or may make the parent feel more confused or guilty
- It diverts the child’s mind from the job of developing his or her own
So we – both adults and children – must encourage young people both to ‘get in there’ and do things with other young people, and at the same time remember to put their own feelings and thought first – even if feels like it means being a bit selfish.
Trust your thoughts and feelings. They really matter.
Alan Cooklin, Psychiatrist, Campaigner for the children whose parents have mental illness, Founder the Kidstime Foundation.
How can I be myself if I have to adjust to my mentally ill parent? I need to put them first, to build my life around them because they need me and I am the only person who really understand them and how to look after them.
“I don’t need anybody” Children of parents with a mental illness often come to school from very chaotic homes where they are hyper-alert and very stressed.
They keep the problem hidden because they do not want anyone to know due to stigma and shame and they do not identify as carers because they are fearful of interventions that they see as making matters worse rather than better. This is one thing they rarely reveal to anybody, not event their best friends. I meet many adults who have never revealed this significant part of their story to anyone and sometimes not even to themselves.
“Give me a Voice: I want to be recognised, seen and heard, I have something to say and I want some answers, please will you talk to me!”
I recently talked to some teenagers who allowed me to see what growing up in a household with mental illness was like for them. I was shocked, frankly. I heard that adult mental health workers, GPs and Social Workers talked over the children when they visited the house, they ‘took over’ when the parent was in crisis and failed to understand that the children needed to know what was happening, had information that was useful, were frightened and protective of their parent. The lack of a voice or even common curtesy added to the stress that the children were under and added to their sense of everything being ‘out of control’. These teenagers were clear that they cared deeply about their parent, wanted to look after them and yet had no voice and no part to play. The fear of lack of control often had a long-lasting effect on the young person, many of them suffered OCD as they grew up and they also talked about the different losses they experienced giving rise to hoarding behaviour whereby they held on to objects because they need some security and things are more reliable than people.
We need to address the specific issues associated with looking after a parent with a mental illness, for example, the attachment issues are different than those who look after a physically ill parent or a parent with a long term condition or disability. Mental illness gives rise to emotional detachment and unreliable care and this may cause the young person to avoid relying on adults, to reject care because they need to be able to look after themselves.
A Mind of My Own! This is a cry that we hear often. Because it is difficult to get close to a parent who has a mental illness the children find a way to be close by taking on the disordered beliefs and thinking of the ill parent. It is essential the children of parents with a mental illness are able to think about the illness as an illness rather than a total description of the person, this allows for more discussion and the ability for the family to plan for the crises, to work together to deal with the situation and to find ways to have some space to be themselves. Having a separate mind is important in developing resilience in which the young person is able to have their own mind, to have thoughts and feelings of their own which can be attended to, which can have the attention they need.
These children have been more or less forgotten by every service and we are almost the only country in Europe who have not addressed this significant risk to children and young people’s mental health.
– Dympna Cunnane, CEO Kidstime Foundation
Ensuring the environment in which a child can thrive is supported not just supportive – an educational challenge
Today I went to a large secondary school in North London to discuss how we might follow up and raise awareness of parental mental illness and its impact on students among the staff. Parental mental illness is one of a number of ‘adversities’ that families and young people have to deal with and I wanted to convey the message that Adverse Childhood Experiences (ACE) are an important focus for anyone who works with children, in health and education and even in the justice system. This research, which has been ongoing in the US, for twenty years now, looks at how much the early life of the child impacts their future life and health. The ACE 10 point scale measures the number of adverse experiences that a child has had to deal with and the consequences on both their mental and physical health, throughout the lifespan. Shockingly, the research indicates that a score of 4 or more will take 20 years of a person’s life expectancy. Unfortunately, many children who have a parent with a mental illness will score 4+.
I wanted to share these ideas because I think we, the adults who teach and care for young people should think about what lies behind the dramatic increases in mental distress in children and young people that we are seeing at the moment. Why are our children self-harming, using drugs to forget their worries and committing suicide in ever increasing numbers? I think that the ACE research provides some insight into the life circumstances of many children in the UK who live with multiple adversity. The ACE framework helps us to think about the origins of mental health problems and what can be done to alleviate some of the stressors. I am aware that our mental health system is creaking under the strain and that this is unlikely to change, therefore we need to think again because what we can do is not working.
What happened when I talked about this was a surprise to me, but it should not have been. The school staff looked shocked and depressed! I did not give them any hope, I just added to their stress and sense of being overwhelmed! I realised that we all need to feel able to do something and that the adults are also experiencing ‘toxic stress’ which leaves them depleted and in despair. A teacher said we either become resigned or we resign. Maybe the first thing we need to do is to address the needs of the professionals who have been given the burden of looking after our distressed children?
The most common reaction I had was that they remembered their own school lives, they put themselves in the place of the child and realised that the school’s approach to the children and education had affected their whole life, not just economically but psychologically, often damaging their self-esteem and their relationships. They want things to be better for the next generation but they don’t know how to make that happen, they know there is a problem with ‘toxic stress’ (sustained and systematic pressures) and that we need to begin to work on removing the sources of stress if we are to improve the mental health of young people. Schools are under pressure as never before and we need to understand that this is not an environment, as it stands, where the burden of looking after the mental health and welfare of children will easily fit, it is already over-burdened.
Finally, one ‘old school’ teacher (his own words) said that they need someone they can trust not just some to be nice to them. How true!
We need to be more hopeful when it comes to Mental Health
Yesterday I spent the afternoon at the South London and Maudsley NHS Trust, Michael Rutter Centre for Children and Families. There I met two very impressive people who have been working with and researching families who are coping with mental illness. Chris McCree has been pioneering the Think Family approach for many years and has succeeded in getting this outlook to be part of the way the institution thinks. The idea is that everyone has a family and that network of relationships is an important part of a person’s mental health and wellbeing.
She has been working tirelessly to link up adult and children’s mental health service provision as well as working with colleagues in social care to ensure all professionals talk to each other, prevent bad things happening and work in the interest of the family rather than be driven by service lines and individual approaches. Chris is one of those people who make things happen despite the bureaucracy and territorialism of organisational life, she calls it “steering around the icebergs”.
Dr Crispin Day is the other person who took time to meet and talk despite his very busy life, in the clinic and research groups. We discussed the highs and lows of randomised control trials and why he still loves them! I asked to meet him because we were speaking at a conference together and had just a few minutes to share our thoughts during the conference. I was impressed by his combination of realism and enthusiasm and the fact that he and his work is making a real difference to people’s lives as well as doing research into what might be the best approach to helping families who face a variety of difficulties. I admire anyone who does something as well as talking about it. In his presentation he talked about the Recovery College which he set up using a simple idea that parents could be trained to mentor each other and didn’t need massive investment to do so. This idea is the basis of the Recovery College and it has taken off around the world and the research proves that it works, it really does help families to function better and the children to become better adjusted and happier.
I walked away from that meeting with a clear thought in my head, we need to be more hopeful. Most of what we hear about mental illness is depressing and pessimistic but perhaps we can recover, given the right support in the right way maybe we have more capacity for recovery than we think. It seems clear that peer support is more effective than other interventions and this stands to reason because social isolation is in itself a source of distress and despair. Of course there is no magic bullet but maybe we need more low tech solutions to help families and children recover their sense of pride and self-confidence.
Over the years, Kidstime – the multi-family programme for families coping with mental illness, loved by children and parents alike – has been a consistent and invaluable source of support for us three and our families. The foundation still remains the only national charity dedicated to helping the children of parents with mental illness, who carry a quite unacceptable burden beyond their years, to positively manage such challenges. So, as the new generation of the Kidstime Team, we would like to share some of the things we are proud to have achieved this year with you.
Firstly, we are thrilled to announce that The Kidstime Foundation has set up four new Kidstime Workshops in the UK this year, bringing us to a total of 14. This now means we support over 300 families nationwide.
Secondly, the ‘Who Cares ?’ Project, our training package providing schools with information and coping strategies surrounding parental mental illness, has set up a hub in Barnet working with 40 new schools and reaching over 2000 children. We also now have a Hub in Plymouth!
Another pivotal development is our new research partnership with the Mental Health Foundation. Together we are piloting a research study (RCT) of the Kidstime workshop in Southwark. We will also be partnering with The Children’s Society in 2018 to run a campaign highlighting the needs of the families and children we support.
Lastly, our awareness raising efforts have also proved very successful! These include: productive correspondence with the Prime Minister and the Minister for Children, and with the Children’s Commissioner; giving evidence to the government’s Science and Technology Committee on Adverse Childhood Experiences; and recording an ‘All in the Mind’ programme for Radio 4. This will be aired at 9pm on Tuesday 28th November and 3:30pm on Wednesday 29th November – we’d love you to tune in!
So, the tide is clearly turning in our favour. This will enable us to continue making a significant impact on the lives of this very neglected group of children. The need is becoming clearer and grants for our projects mean they are moving ahead. However, most of our own work is voluntary and the resource team in the foundation has not grown. Currently Government cuts mean that Local Authority funding for mental health has been reduced by as much as 80% in some London boroughs – when at the same time 1 in 4 people are presenting with a mental health problem which affects some 3.4 million children (Ernst and Young). We have therefore become inundated; with the demands for our services currently outweighing our resources. In order to survive and build our infrastructure further we desperately need £20,000.
We know we are writing to our friends – and relatives! – who may not have money to spare. But we hope you at least have understood the urgent need to support this group of children and will canvas with your friends and anyone who might support us at this critical time. We are ready to move forward and the urgent needs of these children has in no way lessened.
The next phase is therefore to set up a Kidstime Workshop and a linked group of committed schools in every borough and rural community.
Please help us make this happen by supporting us here.
With Warm Wishes from us all!
Ambeya Begum MSc:
Beneficiary of associated young carers school group. Current Board member, Ambassador, and finance officer for Kidstime and a financial consultant for a City Bank
Kirsty Tahta-Wraith BSc: Kidstime beneficiary. Currently Research Support and Trainer for Kidstime whilst working in CAMHS pursuing a career in Clinical Psychology
Chineye Njoku BSc Dip CBT:
Kidstime beneficiary. Current Board member and Trainer for Kidstime and therapist for the NHS’ Improving Access to Psychological Therapies service
Response to the Children’s Commissioner’s Report in the Guardian (October 2017)
I read the report of an argy bargy between the Children’s Commissioner in the Guardian on Saturday with dismay. The reaction of Simon Stevens and NHSE shows a frightening lack of interest or care for growing deterioration in the mental health of our nation’s children and young people.
We are bombarded every day by statistics such as suicide being the biggest killer in young men aged between 15 and 25 plus the dramatic increases in eating disorders in young men. Young women are equally showing signs of depression, anxiety, self harm and body dismorphia much earlier.
It is well known that these symptoms, which are likely to blight the lives of these young people, have their origins in early childhood. Research indicates that adverse childhood experiences (ACE) have an impact not only on mental health over a lifetime but on their physical health too. A score of 4 on the ACE scale (10 point scale) will take 20 years off your life! 9% of the U.K. Population will score 4 or more, which makes this a big public health crisis. WHO have stated this as the biggest public health threat of our time.
Why is it not possible to invest in addressing the root causes, in terms of research but also and more simply, listening to the professionals and affected families? The answer to addressing mental wellbeing is not waiting for a crisis or symptoms to develop but helping the children and young people to deal with the stress they encounter in the family, in schools and in society.
Almost all the services and support for children and young people targets the individual rather than the environment in which children grow and develop. Surely it’s not fair that the burden falls on the shoulders of the people with least capacity to make any change in their circumstances. Once symptoms appear counselling and support will be of significant benefit but early intervention which alleviates the stress would be cheaper and more effective.
Take school as an example, this is where we find children and it’s also where stress accumulates if we are not attentive to what comes with the child, their home circumstances. Many families in the UK have significant difficulties which causes their children to come to school very stressed and preoccupied. The issues include physical and mental Ill health (an estimated 2.7 million children have a parent with a mental illness) for example.
The school system currently focuses almost exclusively on attainment, which is important, but cognitive development is not separate from emotional development. Unhappy, stressed children cannot learn! This situation is exacerbated by the stress on teachers who are bombarded with targets and processes which makes them ‘resigned’ if not resign.
There are things that can be done and we know how to do them but we don’t have the will to address the root causes, we prefer treatment and crisis because it calls for big speeches and grand standing while the low cost alternatives require real commitment and collaboration, not heroic speeches and grand plans.
Dympna Cunnane – CEO
World Mental Health Day – Stories of Survival
To my surprise I now spend much of my working day thinking about a hidden issue but one that has enormous implications for society and particularly children and young people. This issue is mental illness in families, something that is almost never talked about. I often wonder why and of course it’s because of the shame of being ‘mad, nutty, crazy…”
The fact is we do not choose our parents and we think that our experiences are ‘normal’ whatever they might be. Parenting is challenging for all parents but those suffering from a mental illness will have even bigger challenges because of the nature of their illness and often the side effects of their medication. Mental illness hampers our ability to be the parent we want to be and affects all relationship especially those who depend on adults to provide consistency and safety. Mental illness is a barrier to maintaining supportive relationships with extended family and partners yet we all depend on these social structures to be good parents. Just like physical illness we cannot remove the mental illness but we can find ways to help the parents be the best parents they can be.
When I visit big companies, which I do regularly, to beg for funding for the charity, I find that the stigma is still there and seemingly successful people, who have made good lives for themselves, are still keeping the secret. I find out that they have had to deal with parental mental illness in the lift as they are showing me out, this has happened 100% of the time.
They (quietly) reveal “my father has a bipolar disorder” or, “I know exactly where you are coming from, my mum was severely depressed when I was growing up”. In reality I think most of us know someone who has been affected by parental mental illness. Mostly, despite their family circumstances they have moved on with their lives but they have never had the courage to be open about it. Mental illness is one of the last remaining taboos; almost every aspect of our lives have been exposed and explored in public in recent years, except parental mental illness and its consequences. Stigma and shame will remain unless we can talk openly about parental mental illness and if we don’t deal with it, the isolation will ensure that the intergenerational cycle of family mental illness will continue.
Every one of the people who has revealed their hidden past to me has also said they wished there was a charity like ours championing their cause. They wished that they had had a place to go to meet other families just like theirs. They wished they and their parents could have talked openly about their worries and found a safe place to share the ups and downs. They wish they had had a sympathetic teacher or relative who took the time to notice to whom they could turn to when their stresses got too much.
We need to create safer schools which are more compassionate and less punishing, which would help the children to trust others and thereby build more sustainable relationships in their lives. The adults who speak about their experiences tell us they wish there were schools where there was no risk of shame where they feared their friends turning away from them if they mentioned their parent’s illness. And it is this stigma that stops these children from coming forward to any get help.
Early intervention is essential to enable these children to thrive and their strong determination and courage will be an inspiration to those around them. I talk to such young people every day and I am inspired by their pride in their power to overcome such adversity.
Most employers’ want strong, motivated, emotionally intelligent employees but they need to play their part in creating organisation cultures that are safe and compassionate. By taking time to be more aware and informed about adult mental illness and its effects on children and work organizations can help to dispel the shame associated with having a mental illness or living with someone who has.
Dympna Cunnane – CEO
Back To School: Respite, Relief Or Reason To Worry?
It’s the start of September and the school children are preparing to go back to school; parents are preparing children for a new school year, new teachers, new schools and the inevitable stresses and strains associated with transitions. There is of course some excitement in all this but for families where a parent has a mental illness this time of year is more complicated. A lot depends on the support systems surrounding the family and the capacity of the school to support the children. For these children, going to school can be both a respite from the chaos at home and stressful because they are often caring for the parent and they worry about leaving their parent alone during the school day.
So much depends on the school’s capacity to identify and help the affected child. Many schools have young carer groups but very few have an awareness of children who care for a parent with mental illness. There are many reasons for this, the first being that the children themselves are reluctant to disclose their home situation for fear of triggering an intervention by social services which threaten the family. These children often do not see themselves as carers because we don’t see mental illness in the same way as physical illness or disability and the issues they struggle with are quite specific. They are fearful of being seen as odd, crazy or any of the other names which stigmatise mental illness. They do not welcome being referred to counselling because they see this as an indication that they themselves are ill or ‘the problem’.
Schools have become more stretched in terms of resources and many of the support staff have been lost and teachers are driven to be more focussed on educational attainment and cognitive development. This has created a increased level of school stress for the whole school but for the children who have a parent with a mental illness the combination of home stress and school stress become a burden which is detrimental to their wellbeing and ability to learn. We need to see emotional development and cognitive development as interlinked as it is obvious that a mind that is preoccupied has little room for taking in new information.
The Kidstime Foundation is dedicated to helping school staff have the confidence and skills to support these children and to create a safe environment where the children can feel able to disclose their situation without the fear of bullying or stigma.
Kidstime In Action
An account of a Kidstime Workshop Session
The day was excellent! The sessions are just getting better and better!
We are getting to know each other and people are more comfortable and themselves.
As people arrive quiet music plays in the background. People help themselves to refreshments and write their names on the board in a coloured pen. Staff help everyone to arrive and settle.
At the beginning we played a few games, which worked really well!
In a circle with the ball going round saying our names and our favourite foods. This enabled them to step out of self-consciousness and find common interests.
Jo did an exercise with marbles, demonstrating how the build up of thoughts and worries can create a blockage system, making other thoughts not come through properly. Everyone had a marble and gave a worry to put in the cup.
Adults and children were so open with each other. The adults were interested to hear the kids’ worries as well as wanting to voice their own.
The children were getting restless so we spontaneously opted to do the drawing of the thoughts being voiced in the circle. – The kids became fully engrossed with what was being said and drawing it while spread out on the floor with big sheets of paper, working hard to make sure to get all the points down – these were ‘things you do to make you happy’. They voluntarily gave their drawings to the adults, who were very impressed. This led nicely onto the kids’ drama time, as they were already in that space.
We then split into a parents group and a children’s group with the adults going to a different room with Jo and the children staying with me to do drama games.
We played the game “What’s in it?” – This was an improvisation to guess what was in a fragile object using imagination, At first some children thought it was silly but then ideas started pouring out and they became immersed in the world together. This highlighted the importance of creating a space where kids can allow themselves to express emotions and reactions that may appear traditionally ‘silly’ or ‘wrong’ in other contexts.
We played ‘Musical Statues’- this was FANTASTIC!
Great moves and concentration to stay in the game – Through this game we saw some of the boy’s becoming engaged and they continued to play a positive affect on their behaviour and the group’s energy. The group became really united after this.
We developed a play about zombies and someone running away. The story took the person running away to a ‘haven’ but then the zombies start breaking in. So she uses her magical power to shine them off and it works. Then they become their normal selves as if they were not aware what happened when they were zombies. We rehearsed this three times, refining ideas as we went along. It was fantastic. We bowed at the end to the camera.
This was all we had time for and was great in terms of using the time to set a structure of playing, making and filming. We got to explore ideas and practiced rehearsing a piece of drama and having fun and sharing ideas, allowing ourselves to be spontaneous but knowing the boundaries of respectful behaviour.
A ‘difficult’ child was on such good behaviour and he continued to engage by offering to help set up the film space and wanted us to tell his mum how well he’s been doing.
At the Pizza Time and Show and Share Time the kids willingly gave an intro to each section of their film clips whilst people ate pizza and applauded.
Topic Explored – Stigma
We took the teenagers in a different space– their main activity was ‘What is stigma to you?’ which they explored through drawing and afterwards, explaining to the group what they’d done.
They did not want to show their video so we saw what they produced and they explained it to everyone. People were amazed by the strong thoughts the drawings contained. We were really happy to use the talents of the young people to create the visuals. The exercise revealed thoughts and feelings on their experience and understanding of stigma.
Overall it was a great day! Where clear progression was made. The challenging behaviour from a few children was dealt with by one -to – one engagement and this has helped those children to be a lot calmer and focused. They became more engaged in group conversations and were able to share their body map drawing. Their influence on each other and self-awareness has increased and they are becoming aware of the value of positive behaviours and communication in the sessions. It is touching to see that once they begin to recognise their strengths and abilities they want to share these with their parents and have them acknowledged.
We finished with the kids saying they don’t want to take a break for summer holidays. It felt as though the adults had been inspired by the kids’ way of being – there is a sense of greater consciousness and appreciation with praise growing in the room.
Ambeya on winning “Young Student Volunteer” at the Westminster Community Awards
I do not do what I do for appreciation or recognition, but when I find myself being celebrated in an award ceremony like this, where the Lord Mayor of Westminster, the Director of Communities and Chief Executives, are congratulating me for the time and dedication I give to Kidstime, it made me realise that it isn’t officials or leaders who create change, it’s those of us who belong to communities who make things happen and who make a difference.
Of course, I appreciate the recognition and support which this award represents and it helps me to have the courage and energy to keep going. Having heard important people, who were complete strangers to me before this ceremony, list all the work I have been doing for young people, especially young carers who care for parents with severe mental illnesses, I felt overwhelmed, but it also felt really good, to hear back the amount of work I have managed to complete in such a short amount of time.
There has always been a stigma attached to mental illness and most people do not want to think about such sad and difficult things. As a result, you become oblivious to the issues which arise in families where mental illnesses exist. Children who have one or more parents with a serious mental illness will have experienced many traumatic situations throughout their childhood and unless they are helped early, the consequence on their mental and physical health is serious and permanent (Adverse Childhood Events research). Parental mental illness is not a small problem. In terms of numbers, an estimated that about 2 million children are affected and it is a root cause of many of the mental health problems which affect children and young people. However, by providing appropriate and early support for the family and in school, we can protect our children from following in their parents’ footsteps.
At Kidstime, this is what we are about and the message we want to share is that you can prevent the cycle of mental illness.
I feel both glad and grateful that the work of Kidstime, and the work for which I have received this award, is now finally being recognised in Westminster. I hope that such recognition opens up doors for conversations in other areas and increases the emphasis on how important it is to hear from the voices of the unheard and unseen – from children of parents with mental illness whose voices are silenced through stigma and shame. I have taken a personal stand to speak up for those children, as no one spoke up for me whilst I was growing up.
It isn’t fair for children to live their lives as victims of society’s inability to see mental illness as an illness like any other. It is not something we can hide and it is not fair to expect a child to parent their own parent. It certainly isn’t fair not to allow young people to voice their opinions on the things which they experience and which matter the most to them.
Receiving this award has taught me one thing. You don’t need to think of grand plans and big ideas which take ages to put in place or are too ambitious to even consider. This is a way of not doing anything. It really is the little things that make the difference. It is all the little things that I and others in Kidstime have been doing that have made a change to children’s lives, maybe even saving lives.
I am delighted to be part of a movement that campaigns and helps the children of parents with a mental illness; to get the attention that it should and allows charities like Kidstime to move forward and in the right direction, towards a recognition of the problem and the funding of the solutions to enable all affected children to benefit.
Building Communities – For Carers Week 2017
Everything we do here at the Kidstime Foundation, whether it is working with families, schools or lobbying the government, is working to build a community around the child who has a parent with a mental illness.
We know that without a supportive network 70% of these children will go on to have some level of emotional, cognitive or social difficulties and high levels of subsequent depression. The key to unlocking this network is to enable the discussion about mental illness to come out into the open.
At Kidstime we reduce the fear of stigmatization by:
• Providing them with a fun and supportive ‘break’ from the everyday challenges that they face
• Enabling them to build positive relationships both within their family and with their peers/others that have similar lived experience
• Giving them a voice, empowering them through drama, film and creative activities and peer-to-peer confidence building to express their needs, wishes and aspirations
• By providing appropriate ‘role models’, including ex-service users, build self-belief and positive life expectations.
The impact of a community that is open to the issues they are facing is clear when you talk to those that attend our projects:
“I love talking about mental illness because it made me understand more about what it is and how it can affect people, like my mum … I realised I wasn’t the only child with that sort of problem, and that other kids felt the same. This and someone asking me how I felt, made me believe in myself and feel more confident.” Young carer
“Coming [to Kidstime] has enabled her to see that others are in similar situations and, although we have problems, we are working through them. That has given her confidence and now she is blossoming.’ Parent
“I used to think that I was nobody, but it’s like Who Cares? has given me a voice and that sharing my experience can help others. Me and my dad have a future. The world is no longer such as dark and frightening place. I feel that the Who Cares? Project has saved my life.” Young Carer
The Hidden Issue
My name is Matthew, I am 14 years old and I live with my Mum and Dad and little sister. I am in Year 10 and I like school but I find it hard to make friends because I don’t have time to do things with them and I don’t want to bring friends home because my house is very messy and my Dad is a bit unpredictable. He has a mental illness, you see and that means that he often sleeps during the day and my Mum works all the time, she has to do that because Dad cant work. I love my parents but I also feel responsible for them, Mum does her best but she can’t do everything. I do most of the housework and shopping and sometimes I do the cooking but I am not very good at it and my sister is too young. I enjoy being helpful and grown up but it does get me down at times.
Things have improved lately because one of the teachers has taken an interest and asked me how things were at home. I felt better once I told him and I know he understands and will speak up for me if I get into trouble with homework and sometimes I am late for school because things are difficult at home. He talked to me about the need to look after myself, to have a hobby, to go out with friends so that I can deal with the stress. I know this is good advice but it’s hard to make time for myself.
Recently we had an assembly on mental health and it was interesting to understand what mental illness is and how it happens. I realised that it’s not that different from having a physical illness but it’s much harder to talk about mental illness because people call you names. I worry that I will have a mental problem just like my Dad but maybe I can avoid it, that’s what the teacher said, he said it was not true that if Dad has a mental illness I will have it too. I am really interested in the brain and how it works and I hope to find out more in the Carers Group that the school has started. At least I don’t feel so odd any more.
Helping Children Who Have a Parent with a Mental Illness to Thrive in Schools.
Being a young carer or coping with a parent or sibling with a mental illness will have a significant impact on a young person’s school life – both the academic and the social aspects. In the long term this has been shown to significantly affect a person’s life chances. Young people often tell us how having a parent who is mentally ill was missed or misunderstood by teachers, in both primary and secondary school. School staff can be alert to signs such as lots of unexplained absences, lateness, problems completing homework, having the correct uniform or kit, parents not being able to attend meetings, tiredness, distraction and signs of anxiety.
A school that is understanding and responsive can do a great deal to help. It is crucial that the whole school has a positive ethos about mental health and an openness to talking about mental illness. This is beneficial for all children and staff, not just carers and the children who have a parent with a mental illness. Being open about the problem helps to reduce the stigma and isolation experienced by the children and reduces the risk of bullying. We have been working with this issue through The Kidstime Who Cares? programme which has given us the perfect vehicle for addressing the problem, not simply being aware of it, although that is the first step. The Who Cares? Programme has given us the confidence and skills to support the children and has been positively received by students and staff.
We have used Assemblies to raise awareness and to allow the affected children/young people to identify themselves and get the support they need. This has been a vital part of addressing the problem as young people often think their situation is normal or not worthy of attention. It also raises awareness in the wider school community, and working with the issue has had the further advantage of building understanding and empathy across the whole year group and the school community.
Young Carers groups who are attuned to the issue of parental mental illness have proved to be a significant support. Here is what young people tell us about their school’s young carers group:
‘It’s really awesome – to do things that normal kids do and to chill out and not be judged by anyone. The fact that I’m getting remembered is really cool and they know I’m there.’
‘It’s also having the time – it’s at the beginning of the week so anything that’s gone on at the weekend we can talk about. It helps with people’s mindsets, with stress, it’s not just about having fun. Other groups you feel you’ve got to go but this one doesn’t feel like that. If I can’t face people I don’t have to go.’
Young Carers develop many strengths and skills, are excellent at supporting one another and in devising the support they need in school. It can be as simple as providing a quiet room with a sofa. Schools being willing to listen and respond can be transformative.
Mel was instrumental in setting up our Kidstime Workshop in Plymouth and our Who Cares? Programme at Stoke Dameral Community College. Mel also works as a Kidstime Workshop Trainer and has written and contributed to our Who Cares? materials.
Perinatal Mental Health Awareness Week
Having a baby is a life changing experience, both exciting and terrifying at the same time. All parents know that it puts enormous pressure on the couple, the family and the mother in particular. The stresses and strains involved in having a baby can sometimes precipitate mental illness.
Mothers who have a mental illness can often feel ashamed and worried about the effects on their child but the most important thing to remember is you are not alone. Removing the stigma to allow those who are ill and their families to talk about it and get help is essential to recovery and ensuring everyone in the family is thriving.
At Kidstime we have been working with families affected by parental mental illness for 16 years and we have developed the Kidstime Workshops to support the whole family based on our knowledge and research:
- talking about it helps
- knowing you are not alone, being in a group where you feel safe to disclose your fears
- having a good explanation from a knowledgeable, sympathetic professional
Key Points to remember
Removing the stigma, there is nothing to be ashamed about, you are not alone
Being able to talk about it, finding a safe place and trusted adults who share your experience
If it happens tell someone and get help, don’t suffer in silence, there is help available
There is no shame in having a mental illness but we as a society should be ashamed if we allow those who are suffering and their families to remain hidden from support.
A Teacher’s Perspective…
When I first met Ambeya in 2005, I was a Newly Qualified teacher, aged 23, working in an inner-city London comprehensive. I had completed my training in 2 similar schools, but perhaps nothing prepares you for that first year of teaching in a school where many young people face such a multitude of personal and social challenges.
Ambeya, aged 12, was as she is now: inspiring and resilient. She continues to be one of the most impressive and strong people I have ever met. She is completely self-made, despite facing so many difficult circumstances at home – she continued to try hard in every subject, ace her exams, be kind to everyone around her and completely thrived at school. I used to ask myself regularly, how she achieved this, when dealing with so much outside of school.
It’s taken me 12 years, but I realise that all she needed was a pair of willing ears. She needed someone to listen. I would love to take some credit for her academic and personal successes, but the truth is, all I think I did, was allow her to speak freely and listen to her. She did everything else for herself.
I had no training in the consequences of having a parent/carer with mental health problems on young people, and I had no real experience of young people from these background – until I met Ambeya.
However, I believe that through talking, you can knock down walls, and through listening, you can perhaps build new foundations – strong blocks, that are not excluding or protectionist, but foundations that help young people to feel more confident about their lives and futures.
If Kidstime had existed in our area and at our school 12 years ago, and I had known about it, I would have loved to have helped Ambeya meet others who had similar experiences to her. I also wish we could have had whole school training about this topic and how to further support children like Ambeya. I was able to listen and try to empathise, but I could never fully understand how she felt. It would have been wonderful to see her build relationships with others – who had also lived through her experiences and could share her story. And I would have loved to have seen our school work with all staff and pupils to break down barriers, like stigma, to support.
Ambeya and her teacher reconnected after we ran her story in our social media campaign ‘Helping kids #BeKidsAgain’. It has been amazing to hear how much this relationship has affected each of them and to know that even something as simple as having someone to talk to, can have such a big impact.
Ambeya will be taking part in a sponsored trek across the Sahara Desert in the autumn for Kidstime. She is taking on this once in a lifetime challenge to help promote the work of Kidstime to help other children like her have access to support. In order to do this, she must raise a minimum of £2000. Any amount would be appreciated!
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So, what’s the point of drama in Kidstime Workshops?
Wirral Kidstime tells us about the drama in their sessions.
The core philosophy of Kidstime is that children’s resilience to parental mental illness is improved and vulnerability lessened when they have an understanding of their parent’s mental illness, can discuss it with a sympathetic adult and feel their experiences validated by the group.
Kidstime does this in several ways; the use of drama techniques in the warm up session encourages families to interact playfully as a family. It can be daunting coming into the group, and often in Wirral Kidstime some of the adult and child participants begin by feeling anxious or uncomfortable in the group, we frequently start sessions with an adult sitting outside the group or a child may hide behind their parents or the long curtains. Families where a parent is struggling with their mental health are often isolated in the community and when they start Kidstime they often sit on the edge. The drama games to break the ice at the beginning of the session are vital to establish a sense of fun, group safety and acceptance.
After working together on a topic that explains some aspect of the experience of living with a parent with a mental illness we split into separate child and adult groups. Much helpful work in developing a drama or dance in the children’s group starts by working up the drama, in the planning stage. Children’s ideas and thoughts are sought and this allows for the children to talk about their experiences as they plan the drama. When they understand that they are not alone because other children have experienced the same thing their experiences are made valid. This is an important technique to help them process, think about and verbalise traumatic experiences and ways to cope.
Performing the drama is a process of finding words and bodily expression to express, communicate and think about the subjects tackled. The group builds confidence as the drama or dances are always responded to with pride and enjoyment.
But most of all its energetic, active fun!
‘Kidstime takes action on helping us learn about mental health in really fun ways. We use a lot of drama to help us figure out our own thoughts and feelings about our parent’s difficulty. This makes it easier for us to express things in a way that is interesting and easy to understand. Kidstime is never boring!’
‘We normally start our group activity with lots of fun games and warm-up exercises. We then make up stories together that describe all our different experiences. We act these out and film some of them so that we can show our parents how we feel about the topic we have been working on.’
Reasons why I stand up for the rights of children who have a parent with a mental illness.
Life is tough for parents with a mental illness – but it’s also tough for their children.
It is impossible to make this issue go away so I feel it is my duty to raise awareness so they get the support they need to help them get through it.
I want to do my bit and help these vulnerable children and young people protect themselves from the negative effects of living with, and sometimes caring for, a parent with mental illness.
I have met kids from the age of 3 who are caring for their parent. No child should be forced to become an adult from such a young age.
These children don’t deserve to lose out on their childhood and parent their own parents. Just because you can’t see it like physical illnesses, doesn’t mean it’s nonexistent.
These children have become isolated from a society where a mental illness is seen as a taboo or their caring responsibilities do not fit the attributes of a ‘normal kid.’ These children have to deal with the difficulties and heartaches on their own because they feel embarrassed to speak up – I take it as an obligation to be the voice that speaks for them.
When you feel like there is no one to turn to for help, these children can be left with no choice but to take over the parent role and keep everyone safe; sometimes tolerating verbal abuse and extreme and/or aggressive behaviour. This shouldn’t be allowed.
I believed it was my duty to remain strong and reliable for everyone in my life and that I couldn’t let them see the messed up person that goes into hiding.
For those who know me for my stubbornness, I would still like to believe I am superwoman. Which is why, I take it as an obligation to prevent others from experiencing a tough childhood like me; creating the change that these young people are wishing will happen.
Life has been a rollercoaster for me. But, over the years, I have learnt how to manage sometimes life threatening situations. Being a carer has now become part of who I am and I’ve been able to find ways to deal with it on a day to day basis.
If Kidstime was available to me when I was younger, life would have been so much easier for me. I wouldn’t have had to learn about my role as a carer or study mental illnesses through Google. I wouldn’t have had to try to manage everything when someone else could have taken that pressure off me. Maybe, I would have even learnt how to build up the courage to ask for and take help; something which I still struggle to do.
Children who have a parent with a mental illness need the support and resources to better manage their roles at home; building resilience and confidence along the way in order to help them build a brighter future for themselves.
I know there are so many other kids out there who could be in the same situation as me. They avoid asking for help or even acknowledging that they care for someone. They are unable to confront their fears and it hurts to know that they have to deal with it on their own; just like I had to do.
I always thought I was the only one but when I got involved with Kidstime, I see so many children in the same boat. I would like to see all the kids in this situation learn that you can look after your own emotions as well as coping with mental illness, as a family.
Investing in young people’s physical and mental health shouldn’t just be a moral imperative, but will prevent problems occurring later in life which may need more intensive and expensive support.
I’ve never really had dreams before – but being a part of Kidstime has allowed me to start dreaming. And I do dream that one day, the words ‘young carer,’ ‘mental illness,’ and other word which carry such stigma – are used as words to describe achievements, as positive challenges and something recognised for the right reasons. Because right now, it feels like we are so far away from achieving that.
I will be taking part in a sponsored trek across the Sahara Desert in the autumn for Kidstime. I am taking on this once in a lifetime challenge to continue to raise support and awareness for these children and the work that Kidstime do and I would love for you all to feel the passion and energy that I feel. In order to do this, I must raise a minimum of £2000. Any amount would be appreciated and your support will carry on driving my commitment!
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The impact of Who Cares? In schools.
Joel cares for his father, who has physical and mental health problems.
Through the Who Cares? Project in school, I now recognise myself as a young carer, and that
there are others like me.
My peers in class now understand what my life is like, and why I am sometimes worried… I used to think that I was nobody, but it’s like Who Cares? has given me a voice and that sharing my experience can help others.
Me and my dad have a future. The world is no longer such as dark and frightening place. I feel that the Who Cares? Project has saved my life.
I was 13 when Dad got ill he had depression and chronic heart disease, and loads of other things. I had to cook every night do dishes, clean up – everything I thought Dad would do. It wasn’t so bad that I couldn’t bear it but I wasn’t able to concentrate on school work and had really bad grades in English and maths.
It was complicated in the beginning because no one knew that l was a carer.
Until I saw the Who Cares? film I felt isolated. I didn’t have any school friends, I was on my own everyday. Sometimes l wouldn’t go home until seven or eight because I didn’t want to. But that has all changed because l have opened up and told my stories.
After I did this even others in my class changed their way of acting. It has helped me to talk. It was easier to talk to a group than one-to-one. Now it’s better and easier, but my Dad won’t get better. It will be like this until I leave home.
There are good days and bad days. Dad doesn’t see himself as ill he is always going to be stuck with it but l find it easier to cope now. And my grades have picked up. I have now heard of people having the same or worse problems but never met them face to face.
My advice to anyone in the same boat is to speak to someone before it’s too late. When you are in the situation you feel isolated and don’t want to speak to anyone because you feel no one will help and you think you are the only one with those problems. Speak to a family member you can trust or a teacher or a friend you can trust. Us young people don’t get enough information about this. The authorities don’t really know how we feel. They should come and talk to people like us. Posters and books could help to inform and help us. Kidstime and Who Cares? are doing that.
It’s nice to see someone in your situation and watch what they do. When I saw the first Kidstime Who Cares? film. I thought that was me. That’s what I’m hoping this film will achieve with others.
Chineye Njuoku, 27 attended Kidstime from the ages of 13 to 17.
She is now a trustee and ‘experience counsellor’ with the charity and is pioneering a TeenTalk programme for adolescents. She is a Psychological wellbeing practitioner and a cognitive behaviour therapist in training for IAPT.
My mum had postnatal depression when I was born and is also bipolar, so I’ve always known mental illness. When I was two years old, I was sent to Nigeria with my elder sister Sabrina and we stayed there, living with my father’s family for the following seven years. My mother remained in the UK and we would talk on the phone, but I remember her sounding strange and relatives would talk about her having “a madness”.
We were reunited when I returned to the UK at the age of nine. I had imagined that we would hug and kiss, but she was withdrawn and I now understand that she was numbed by her medication. She still wasn’t well enough to look after us so I was sent to an aunt’s. At school I did well academically, but I couldn’t relate to other students. A teacher took me under her wing and, gradually, I told her what was going on and she encouraged me to make friends.
By my early teens, our parents had divorced but Mum was well enough for Sabrina and I to live with her. It didn’t all go smoothly. She would have relapses and we would be sent to stay with relatives and went into foster care for a period.
I first became involved in Kidstime through social services. Alan [Dr Cooklin] was the first person to describe my mum’s illness clearly to me. I realised why she was different and that I had nothing to be ashamed of. I also met other children with the same problems and that made me feel that we weren’t abnormal.
At home, I had to behave like an adult; most of the time we couldn’t run around or make a lot of noise and we had to always make sure Mum was ok. Kidstime was the one place I could be a child – I could play, have fun and laugh for a couple of hours and I really needed that.
In my mid-teens I went through some bullying problems that led to rebellion. I stopped taking my education seriously and bunked off school. I had been in the top set, but went down to foundation level. My English teacher picked up on it, talked to me and made me realise that I did care about being successful. I knuckled down and went to university, where I graduated in biomedical science before doing a master’s in psychological therapies. I now work in mental health.
Mum’s health is still up and down, but we are doing ok. Two things have got me to where I am: Kidstime and my teachers. That’s why I am so keen to see Who Cares? in schools. With the right information and support, teachers have the power to make a difference to children like me.
Who cares? We do
Offering effective support to children of parents with a mental illness is vital for good health outcomes. Jess Streeting describes an inspiring project at the Kidstime Foundation which does just that, working with school children to improve their resilience.
People are not always aware of the distinct role of the school nurse. In essence, we take over where health visitors finish, promoting the health and well-being of the school aged population, aged from five to 19 years old. We work closely with schools, children and young people and their families, helping to lower barriers to learning and supporting young people to navigate the path to health.
Our work is fascinating, fun and challenging. At present there are fewer than 1,400 qualified school nurses in the country.
Introducing Who Cares?
On project, very dear to my heart, is the Who Cares? project at The Kidstime Foundation. The project was founded by Dr Alan Cooklin and offers information, resources and support to children and young people who care for, or are affected by, a parent or sibling’s mental illness. Kidstime focuses on improving the child’s resilience through engaging him/her in explanation which can make sense of their parent’s less rational behaviour.
I first became involved with Who Cares? when piloting a project as a full-time school nurse in one diverse, high need London secondary school. There we ran a young carers’ group, specifically for young people who have a parent with mental illness. The group, facilitated by two family therapists and very much led by the young people themselves, had the full backing of school and governors, who demonstrated unusual insight into this often-overlooked group.
With the support of The Kidstime Foundation, we made a film about the impact of having a parent with mental illness. Many of the young carers took starring roles in the film, which features a boy called Jas who is struggling to get homework in, be on time for school and care for his sister, whilst keeping up appearances at school. Jas is also getting teased by peers and when he retaliates at comments about his mum, his teachers are puzzled at his uncharacteristically volatile behaviour.
As well as outbursts of anger, teachers have noticed that Jas seems withdrawn and disengaged in class.
You can watch the film which also contains comment from teachers, support workers at school and Jas’s little sister, who is a bystander at the fight, elsewhere on the Kidstime Foundation website.
Children take the lead
This was our first film for Who Cares?, although Kidstime has been using drama and film workshops as part of their work with families for several years. Who Cares? is distinct from the other elements of Kidstime because it is a school-based project. Working within the school environment has many advantages, not least the potential to reduce stigma based on misconception around mental illness, in the whole school community. Interestingly, the young carers had wanted to call this part of the charity ‘mental’, as a direct challenge to this stigma. It was adults who struggled with this title, particularly when we were looking for funding support from larger professional bodies. Who Cares? was the children’s imaginative, if pragmatic alternative. From the initial success of this film, ideas flowed, the best often generated by the children.
For every 1,000 children and young people aged between five to 18 there are between 110 and 220 whose lives are affected by parental mental illness, but like Jas in our film, these children can be hard to identify. Referred to as ‘the invisible dimension’ in some studies, they may present at school with deteriorating attendance, low level behaviour issues, or unwillingness to participate in afterschool clubs or plays, because they have commitments at home which they do not feel they can share and responsibility more burdensome than their peers. Having a parent with a mental rather than a physical illness can carry additional strains for the child or young person, which can set them apart from other young carers.
International research concurs that these children (sometimes known by the acronym ‘COPMI, meaning children of parents with mental illness), need support in three key areas:
- interventions to diminish social isolation
- access to a neutral adult to listen and act as advocate
- explanation of their parents’ illness with opportunity to address their concerns.
Although COPMI is an Australia-based initiative, their research shows their work crosses boundaries as well as the globe, with their resources now increasingly adopted throughout the UK. One of their statistics highlights the importance of this work: the risk of developing mental disorders for children whose parents have a mental illness ranges from 41% to 77% (see Further information box for website details).
The Who Cares? project is able to address these needs by working closely to individual schools’ requirements, with a flexible programme of training from skilled worker, informed in large part by the children identified in the early stages of the programme. For example, one marvellous school in Plymouth, Stoke Damerel Community College has embraced the project and made it their own. In February 2014, despite extreme adverse weather conditions in the West Country, huge numbers of diverse professionals attended our initial awareness raising conference. With our tailored support, this school went on to establish a young carers’ group and through cross-curricular work in school, other young people came forward, recognising themselves as in need. In some cases, the school had been completely unaware of the home situation for their students. Finding a voice has transformed these children’s lives and they are now strong ambassadors for the work of Who Cares?, as well as keen critics of anything they feel to be disingenuous or unhelpful.
The importance of good communication
I use this quote to illustrate the importance that children receive an explanation of mental illness; what it is, why their parent might be unwell and most significantly addressing the fear that they might ’catch it’. A clear explanation can also meet the specific need for children to make sense of their parents’ illness, to help the child associate the illness with a set of neurophysiological processes, rather than just the parent’s emotional responses. This strengthens a child’s resilience. Explaining might also encourage a child to start to trust, which can mean they disclose more therapeutic need.
The good news is that helping is not so difficult; initially children are not asking for specialist counselling support, rather a neutral, listening adult who ‘gets it’, who they can turn to at school on bad days and ask to act as their advocate where necessary. Our training materials can empower whole school communities to understand more about the impact of parental mental illness as well as giving individuals the confidence to be that vital support.
For me this has been the most illuminating aspect; learning that we don’t have to be psychiatrists or experts to talk to young people about mental illness. Often they are the ‘experts’ in their parent’s condition, but no one has thought to consult them.
Asking the right questions
Before I was involved in the Who Cares? pilot, I remember feeling at a loss to know how to help such children. I wrote in my diary:
‘Home. Watching my own kids safe in front of the telly after supper, I wonder how little Paul is tonight. His mum is mentally ill with a chronic condition that seems untreatable and the bullies are looming, press-ganging him into doing stuff he shouldn’t, late at night, out on the streets. He is such an easy target. The big boys won’t lay off him, when all he has to stand up for him on the estate are a vulnerable mum and two little sisters. How to ascertain his health needs? Is he in danger? I got nowhere today, but I think I asked the wrong questions.’
The boy I was writing about, Paul, spiraled fast, away from the protection of mainstream school and into the less tender embrace of the criminal justice system. I had not asked the right questions. None of us had. Maybe I would do better now. Maybe I would know that Paul needed fewer questions and more empathetic listening.
Several of the early ‘Who Cares? COPMI pioneers are now working in some capacity for the Kidstime Foundation. I would like, finally, to draw your attention to Ambeya and Kirsty, both young carers, who are both now at university. You may wish to read about them on the Kidstime website or (shameless plug here!) to sponsor them in their fundraising endeavours for the Foundation. Kirsty completed a 10k run and Ambeya has already walked the Great Wall of China and this year is trekking the Sahara. These young people do not want our pity, but they do deserve our boundless admiration.
Ambeya and Kirsty symbolise what can be achieved, if only children receive the right level of support and are listened to. I believe Who Cares? is a great example of a project which can reach out to other COPMI children and really make a difference. I hope this might inspire you to find new and innovative ways to do the same.
www.copmi.net.au The COPMI (Children of Parents with a Mental Illness) is an Australian initiative which provides information to professionals wishing to support families either individually or through community services.
www.schoolhealthstreet.co.uk Jess runs a website called School Health Street, promoting best practice in school nursing
5 reasons why learning about my Dad’s mental illness really helped me…
1. Learning more about a parent’s mental illness helps you know what to expect because you’re often scared of what you don’t know.
The nature of mental health problems are often that they are confusing and unpredictable and this is especially true for people with bipolar, like my Dad. We never knew when his next low or, even more scary, next high would be. As I was young, most people wanted to ‘protect’ me from my Dad’s illness which in reality meant telling us that he had a serious condition but not to worry about it – yeah right! This provoked a lot of anxiety for me about how to predict my Dad’s mental state from his behaviour, something I have since learned is rather unhelpful and just makes things worse. Learning about my Dad’s condition really helped me to relax and accept that you just had to go with the flow. I was taught ways of dealing with it if he did become ill, like who to tell and who to get help from and most importantly techniques to help him feel better more generally, after all – all you really want in that moment is to help your parent feel better. I did also learn, from professionals, what things were strong signs of him getting worse. This made me feel much more in control and allowed me to realise when it was worth worrying about whether he was becoming ill; meaning I spent a lot less time worrying about and freaking out over really small, insignificant signs. It really is the oldest trick in the book, learning what to expect means you feel more prepared and confident in handling the situation. Having an explanation made me feel more removed from the illness.
2. Learning more about a parent’s mental illness breaks the silence and stigma.
People don’t talk about mental health problems – it’s all very hush hush. We all just pretend it isn’t happening as this is much more comfortable than having conversations about them and sharing experiences. Well, for a child living with a parent with a mental illness, or anyone living with such a person, it is simply impossible to sweep it under the rug. It is blatantly obvious, yet your parent’s natural protective instincts and the deep rooted stigma in society teaches you to avoid the topic. Going to Kidstime and learning about my Dad’s mental illness reversed all of this with a simple conversation. It lifted the heavy burden of embarrassment from my shoulders and made me feel much more comfortable talking about it with other people – whether they liked it or not. It got rid of any myths I had picked up about mental illness, like it was shameful to have mental health problems or not be able to work etc. because you learn that this is natural and understandable. This made me feel much better and less embarrassed.
3. Learning more about a parent’s mental illness is a form of recognition.
When you are a young person caring for a parent with a mental illness you can feel lost and confused about your place in the system that is designed to help your parent. On the one hand the adult mental health professionals frequently depend on their patient’s child, regardless of age, for detailed information regarding their parent’s behaviour and medication e.g. drug names and recent doses. But on the other hand you could think that professionals were actually unaware of these children’s caring role because when it comes to support for them there is next to nothing, particularly for children of mentally ill parents. Learning about my Dad’s mental illness finally made me feel like this caring role, that I was very aware of doing, was being respected. I was being given the recognition I deserved. I dealt a lot with my Dad’s doctors etc. and even after disclosing really distressing information to them about my dad I was never asked how I felt about it, so the contradiction was painfully apparent for me. Being given somewhere to go to learn about my dad’s condition and difficulties was a real relief for me – it felt like a sign of respect or celebration of my hard work – hard work that I wouldn’t change or have anyone else do for the world.
4. Learning more about a parent’s mental illness can help children be more understanding of their parent’s difficulties, be more sympathetic and feel less to blame.
Despite caring very much for and loving my Dad his illness, and his resulting behaviours, led to me having some very complicated and conflicting emotions. Being acutely aware that your parent was less able to do what other parents could do or would excessively worry about something that your friend’s parent’s didn’t worry about – was inconvenient at the best of times, anger provoking at other times, and, at the worst times, left me feeling like I am the problem or to blame. Learning about my Dad’s mental illness gave me huge amounts more empathy for him. This was from being able to understand that he couldn’t help how he was feeling and that sometimes the behaviour he displayed was the last thing he actually wanted to. It also helped me realise that I was not causing him to be upset, or angry or quiet all day. I genuinely believed that I was to blame for his emotions when I was younger – but learning that the emotions were down to having a mental illness and learning why having a mental illness makes you feel a certain way took away this guilt. Feeling solely responsible for causing someone’s emotions is also difficult because you feel like you are also responsible for making them happy too. This means I could feel like a failure if I didn’t make him feel better. Learning about his illness made me able to feel less guilty when he was sad and I was able to relax more with the understanding that it wasn’t all in my control. This helped our relationship because I also knew that he wasn’t just mean or frustrating on purpose – it was his illness – and I didn’t feel bitter or angry at him for the things he wasn’t able to do. Being able to realise this at an early age definitely helped prevent this from affecting our relationship. I didn’t blame my dad for his differences like I used to – I understood it was his illness.
5. Learning more about a parent’s mental illness means you can explain it to others too.
By being able to understand what was happening to my Dad, I could explain it to friends that might notice something was up without feeling embarrassed. Some of my friends had a lot of questions too once I actually spoke to them about it and it felt really good to be able to answer them. I feel like my friends/classmates were a lot more understanding and less likely to tease me about it if I was confident in explaining my Dad’s situation.
Kirsty started our workshops when she was 8 years old.
She is now an ambassador for our charity.
‘Kindness’ and what it means for children who have a parent with a mental illness
This week is Children’s Mental Health Week. The theme this year is “Kindness”.
Kindness (noun): The quality of being friendly, generous, and considerate
“Kindness can seem to be such a soft and woolly word, but it can have real meaning when applied to people experiencing prejudice, bigotry, and bullying – one person’s kindness can sometimes make the difference between a kind of hell and a sense of hope, and not being alone to face and challenge adversities.”
So what is kindness and how can we learn from the conversations about happiness this week? Our CEO, Dr Alan Cooklin has written a blog post on what kindness means for the children we work with who have a parent with a mental illness and the impact it can have on that child’s life.
This applies to all kinds of prejudice; race, gender, disabilities and the rest….but an often hidden prejudice is felt by the 2 million children who have a parent with a mental illness. Many isolate themselves, assuming (sometimes correctly) that none of their friends or school mates will understand.
And for those school friends it is not an easy job to understand unless they have had an opportunity to learn what mental illness is like, what it’s like to be the child of a parent with the illness, and how much some understanding (for which read kindness ) matters.
So why does it matter?
Because if your parent has a mental illness you may feel that you are drawn into his or her world or way of thinking, almost out of loyalty. It may seem so far away from what friends and school mates talk about that it can seem like another world. Then unkindness or bullying just confirms it and encourages you to stay alone and isolated.
If someone can understand in a kindly way, and break through your barrier of isolation it can make all the difference. From avoiding school – or at least avoiding all activities and people at school – to you being able to join in and feel part of a world that is not just centred around your parent’s illness. You can start to be a kid again.”
This blog post was written by Dr Alan Cooklin, CEO of Kidstime Foundation. Kidstime Foundation provides information, resources and support for families who care for, or are affected by, a parent or sibling’s mental illness. They also have a number of projects in schools around the country to raise awareness of the difficulties faced by these children and young people.
A Hidden Issue
‘I always thought I was the only one but when I go to Kidstime every month, I see so many children. I would like to see all the kids in this situation learn that you can look after your own emotions as well as coping with mental illness as a family.’ Young Carer.
A young carer is: ‘A child or young person under 18 who provides regular and on-going care and emotional support to a family member who has a physical or mental illness, disability or misuses substances’. ADASS, ADCS, The Children’s Society 2012.
Children who have a parent with a mental illness might not be identified as a young carer. They might not meet the criteria of doing a caring role. Maybe there is another parent or family member seen as the main carer for their parent. That person might even be an older sibling.
They may never have thought of themselves as a young carer, or heard the term before.
They might not think it applies to them because they don’t do any more at home than you usually would. They’re not doing more housework or cooking or helping a parent get washed or dressed etc. Or it might be that their parent or another family member would be embarrassed if they or someone else thought of them doing things which is an adult’s job.
Or they might just think that loving, caring or helping your parent is not something as officially as ‘being their carer’. But being a young carer includes emotional support as well as caring duties.
It might also be that they themselves or family members treat their parent’s illness and the caring that they do for them as a ‘secret’. Because of the ongoing stigma and discrimination around mental illness the young person or their family may not wish to speak out about what it is happening at home.
‘…you can’t talk about it at school because you know it makes you different. But at Kidstime, children talk about mental health all the time so you can stop holding in your feelings. It’s comforting, and I felt more accepting of my dad.’ Young Carer.
Even if they don’t seem themselves as a young carer, if you know someone who has a parent with a mental illness that may mean they are doing some caring roles, whether this is practical or emotional. Speak up for those that are caring for a parent with a mental illness. #carersweek
The importance of Good Relationships when your dealing with a parent who has a mental illness.
It can be hard enough being a young person but having a parent with a mental illness can bring a lot of added stresses and pressures. Often this has happened when no one else even realises or acknowledges how much you are caring or doing. Also when you don’t have anyone you can talk to about what is happening at home and what is worrying and stressing you out, these pressures can seem really overwhelming.
This is made worse because it can be very difficult to talk to anyone else in an open way. In fact, it is still uncommon in general every day conversation for people to talk about mental illness, and what it is like.
Life at home may be so hard that you stop seeing your friends and having fun. Maybe you don’t want to bring friends over because your mum or dad isn’t feeling well. Or maybe you’re embarrassed by the state of your house, or by your mum or dad.
Having someone to talk to and developing good relationships are necessary and important to everyone.
So what of relationships and with whom? Some young people think that relationships mean boyfriend or girlfriend. Of course they can be with anybody; good friends, relatives, adults you trust from school, clubs or others.
Why do they matter? Good relationships – especially outside the immediate family can help you to think more independently, not to blame yourself, and not to fear that you have to follow your parents illness. It can be an uncle, aunt, a particular teacher or school nurse, family friend, cousin or any of your own friends. Another parent who is understanding and rather ‘neutral’ or a special brother or sister can help a lot too.
Taking some time for yourself with a friend or friends you can hang out with and just have fun, can help you to feel more relaxed and help you to feel good about yourself and your situation at home.
The people you have good relationships with can help you to challenge stigma, to stop letting you think badly of yourself, and research has shown that even if there is ‘illness in your family’ that good and supportive relationships can help you to be no more vulnerable than anyone else. So hurrah to good relationships!!
Thoughts on relationships when your parent has a mental illness:
Caring with a parent with a mental illness can have both a positive and negative effects. Even though it has given me the skills of being strongly independent, it has affected my relationships with others in various ways and you only begin to realise this once you start growing up and view things from a different perspective. Only till now, have I realised how important it is to have strong relationships with those around you.
The main relationship that has been affected is my relationship with my mum. It hurts to know that her mental illness is the reason why I will never be able to have a ‘normal’ mother/daughter relationship and there have been many times where the roles switched and felt like I was mothering her in ways a young carer would.
Relationships with extended family were affected too. They can be understanding at times, but when in need of desperate help, they too would not know how to react to the situation. Living in a household where a parent has a mental illness, extended family never really know what happens behind closed doors. It’s been over 14 years now – and they probably still don’t know. It affected my relationship with my younger cousins too. Being the eldest cousin from my mum’s side of the family, I felt like I was pushed away because my family circumstances were different. It didn’t help knowing that extended family only lived a few doors away.
But I still had my dad and my brothers. Obviously during times of major distress, we would always stick by each other and make sure everyone was safe. However, everyone deals with stress in his or her own way and the build up of stress was taken out amongst us, as there was no one else.
Then there is the relationship you have with friends. When I was younger, I was never able to take part in social activities. I had to stay at home and look after my siblings. As the years went by, I began taking part in social events once I began sixth form and during university. But when you are a carer, you never know what is going to happen next. You are always on the edge and there have been many times where I would organise events and then cancel them; or I would back out of outings because I would have a duty to go home. However stubborn I may be, I always needed to remind myself that if my own family can’t help me when I need them too, I have great friends who would pull themselves together and be mentally strong for me when I can’t cope myself. These are the relationships that have helped me get to where I am today.
Even though I have grown up to believe that being a young carer and asking for help is a burden on others, I now believe that sometimes it takes more than one person to help you get through tough times. The past is something that should always be forgotten, but I have experienced and learnt things, which many are still learning now.
You will always have positive and negative relationships in life and everyone experiences them. But, growing up as a carer, forming relationships will always be difficult due to the stigma attached to mental illness. The lack of attention to how children are affected by parental mental illness and the emotional and behavioural impacts this has, is still unheard. This has to change.
Ambeya, Young Carer.
“I was very reluctant to socialise with my friends due to the responsibilities I had as a carer. I would particularly make excuses to my friends, reasons why I could not meet up, when my mother was experiencing a relapse. I was worried that if I met up with my friends, I would disclose what was going on at home, which would make me feel vulnerable. I later discovered that engaging in my social and private leisure activities was important for my own wellbeing. Also, I learnt that I do not have to divulge personal information about what happens at home as I can always talk to my friends about other things. Nevertheless, the more I met up with my friends, the more I was able to discern who I felt more comfortable talking to about personal things. This made me feel like I was not alone.
I also found that developing a relationship with my mother was also very important for my wellbeing. It is so easy for her illness to create to barrier between the both of us. I respected the fact that she did not necessarily like to talk about her health with me. I therefore talked to her about other things and did other fun activities with her. This made me see her in a different light and strengthened my relationship with her.
I cherish my relationship with my mum, family and friends, partly because it is beneficial for my own mental health.”
Chineye, young carer.
“Caring for someone with a mental illness has its forgettable effects. I experience worry while not being at home because of what may happen when I’m absent, this causes a strain on my friendships and I’m overall unreliable when it comes to schedules.
This is because mental illness is an on going rollercoaster of events and emotions that repels you from being in a social environment. Family members can be understanding but unwilling to co-operate causing distress when unable to seek help.
Patience is a skill that can never truly be mastered; it is difficult to know if a breakthrough exists. Although, I have become patient with others around me, understanding that negative events in social constructs can be dealt with patience.
Having this responsibility has given me the ability to persevere during relapses, problem solving emotional situations at its extremes, making it feel like basic relationships always have the capability to be restored with the right time and effort (from both parties).”
Angel, young carer, 18.
Have you heard of COPMI?
If you live in the UK you probably have not. That is because the UK government does not even recognise Children Of Parents with Mental Illness (COPMI). If you are a ‘COPMI’ and you live in Australia, Norway, Sweden, Denmark, Finland or Iceland you will be recognised and have services to support you. In the UK we do recognise Young Carers, and some of those are also COPMI, but the different estimates of young carers are still between 175,000 and 700,000 – while in the UK COPMI are estimated as 2,000,000!
Young Carers suffer from:
- Missing school and lower educational attainment
- They are more likely to have special educational problems
- They often have lowered economic living standards in the family
- They suffer higher levels of all kinds of illness themselves
- They often suffer social isolation and sometimes depression
- They often suffer bullying and stigma from their peers
Children Of Parents with Mental Illness also suffer:
- Distress and confusion from the ill parent’s ‘ill’ thinking. They often feel that they should try to agree with their ill parent, even if what the ill parent says is very strange or upsetting.
- They can feel great loss from feeling they have lost closeness with a parent they thought they knew before the illness. Sometimes they can get that closeness back but if the parent’s illness is very bad and continues for a long time they may feel like they have lost that parent.
- They also may experience stigma and bullying, which may be worse if they also feel embarrassed about their parent or even about themselves.
- They may be distressed and frightened by the side effects of their parent’s treatment, about which they may have had no warning. These include things like:
- Sleeping much of the day
- Becoming more withdrawn and detached
- Suffering muscle stiffness or strange movements
- Showing increased excitability or irritability with some drugs
So that is a lot to cope with, on top of which they may believe and fear that they are likely to develop the same illness – especially because many people carelessly and inaccurately say things like ‘It runs in families’.
So what of relationships and with whom? Many children of parents with mental illness can find relationships with friends and others of their own age to be difficult, and as a result may pull away from other young people. The difficulty they often have is that they can feel that their lives cannot be understood by others, they may feel too embarrassed by their ill parent to invite friends home, and sometime the ill parent may discourage much contact with outsiders of the family. Also sometimes they may be teased or bullied about their ill parent. Even with adults they may find it difficult to trust that they and their life will be understood. Finally they may also be shy and want to stay at home if they have felt very insecure during their early growing up.
Research has shown that even if there is ‘illness in a family’, good and supportive relationships can help these children to be no more vulnerable than anyone else. As highlighted by this year’s Mental Health Awareness week good relationships are fundamental to our health and wellbeing.