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.