I am Maureen Martin, the chief executive of EDG. EDG has been working with people with learning disability and their families for over 25 years. From this work we know the importance and value of people connecting with each other to share experiences and learn from each other.
I am the narrator in the film and clips that you can view here and we commissioned Claire Edwards to develop this project with us. Our experience shows us that putting older and younger parent carers together can present some challenges as the negative experiences of older carers can dominate the conversation and frighten the younger parent/carers. This means that we can lose the potential learning and support from such encounters.
Through this resource we want to help facilitate useful discussions that will focus on the need for early planning and use the video clips to explore further certain themes for families. We developed the conversations that you see and hear with the parents so that as well as being part of the filming they had the opportunity to reflect on and address their own issues as part of the project.
In the age of the internet and social media we know that providing visual resources reaches wider audiences. Parents reported to us that they used the internet including 'YouTube' and parent chat rooms to learn about other peoples' experiences and to access information and support. Parents reported that they valued hearing about ‘lived’ experience and that in addition to having credibility, listening to other parents can make them feel less isolated.
The internet is an excellent resource however, much of what is available is unregulated and it is essential that parents can be directed towards information that is monitored and evidence-based. Our resource is the direct outcome of talking with parents and family members about their lives.
I am Claire Edwards and I was commissioned by EDG to design and deliver this project with Maureen, EDG’s chief executive. In addition to being a trainer and a consultant I am the parent of a young man with learning disability. Joe has Down Syndrome and Autism and currently lives with me and also with his father (although we are divorced we share Joe’s care and he spends alternate weeks with each of us).
I am a qualified counsellor and coach and I have worked in the voluntary sector for 25 years in Glasgow and Edinburgh. My therapeutic training influences all my work and I am always concerned with the emotional impact on people of their life circumstances.
A major focus of my work over the last 16 years has been providing advocacy, information and emotional support to families of disabled children and young people and the professionals working with them. From 2000 – 2008 I was the Training Manager and then Director of SNIP (Special Needs Information Point) based at the Sick Kid’s Hospital in Edinburgh (now known as Kindred). As a consultant I developed a range of educational materials for the Network for Children with Exceptional Health Needs. My short films and training workshops included topics such as the emotional impact of tube feeding your child, communicating with non-verbal children and adjusting and adapting to your child's disability. Visit: http://www.cen-nhs.net.
In 2014 I joined EDG in a development role as maternity cover and since then I have worked on specific projects such as this one where my particular skills and my perspective as a parent can be of value.
Being a parent is a key qualification for leading on this piece of work. The issues we are trying to address within the project are ‘live’ and relevant to me. My son is currently in transition from high school. He is a young adult. His father and I have gone through the process of guardianship and we are actively thinking about his future and what we want for him.
You will hear and see me in the film talking with other parents and in one of the video clips I give my personal reflections on the issues and what I have heard from the older carers.
I am not claiming to be a representative of parents of disabled children (of all ages) but my experiences over the years talking with literally hundreds of other parents and professionals working with families has led me to identify a number of issues and concerns that we have in common. .
We want to provide strong examples of discussing a potentially sensitive and challenging issue and provide guidance and opportunities to explore it in a safe way.
People learn in different ways but when thinking about emotional issues many people find it easier to learn visually as well as aurally. Showing people talking together puts potentially sensitive issues into a natural, conversational context that can feel more accessible and encourage viewers to reflect on the issues in a 'safe and contained' way.
The film and clips within this resource show some parents talking about how they feel about their disabled children (young people and adults) leaving the family home and living independently from them.
You will find on line resources - a film, video clips, reflective questions and discussion materials. I have designed this resource with EDG for two main audiences:
Within each section I address each audience directly. Being a parent or family member will influence how you view and feel about the film and clips. As will being a professional in the field. Some parents will have another perspective, that of being both a parent and working in a relevant profession such as a teacher or a physiotherapist. I try to take account of these different perspectives and influences.
You can of course choose to read only specific bits, all of the information or indeed none of it. We believe that the film and video clips are interesting and can be helpful in their own right. However, we know some people find it useful to have further information and/or encouragement to reflect on what they have seen and heard.
These resources have been developed to help you explore this particular issue that affects us as parents, carers and family members of young people and adults with learning disability - our children moving on to greater independence from us and being protected and cared for after we have gone.
We want the best for our children and for their lives to be full and interesting. This can include daily activities such as gardening and cooking, supported employment for some, social opportunities with friends and families - the stuff of ordinary life! Thinking about the future for them as one in which we will no longer be around to support and care for them can be very challenging...but it is something we need to do and the earlier we can start to think about it gives us time to adjust and adapt to the inevitable.
This resource is designed to support conversations and encourage positive discussion – everyone’s experience has unique aspects but there are common themes that we share as parent and carers. Some of what you see, hear and read may feel very relevant to you, other bits less so. We are all different – as people, as parents, as family members – but we can share some experiences and learn from each other.
You may find the content of the film and clips make you feel emotional. The parents involved in the filming certainly did. This is a completely natural response. Thinking about and planning for our children's future is emotional.
If you are looking at this resource by yourself you might wish to build in a break rather than view it all in one sitting. As the film deals with these emotional issues it would be helpful to think about whom you might talk to about it afterwards. If there is no one for you to talk with at the time, what can you do to support yourself if you feel upset by the issues discussed?
If you are watching the film as part of a parent-led support group and wish to work through the reflective questions together, make sure that you take it slowly and build in breaks.
As you have come together to support each other you will already be alert to the need to take care of each other. Not everyone in the group may be ready to think about this issue.
In advance of viewing it let everyone know:
The resources can be used by you to –
This resource therefore includes information and guidance for anyone wishing to run a formal session to address the issues. You can download all the guidance material here or as required as you make your way through the project page
The film, clips and website materials have been developed by EDG with funding from The Robertson Trust and The MacDonald Trust. Parents gave their time to the making of the film and clips in a desire to help other parents and carers to think about some of the issues involved in moving their children on to greater independence from them. For all the parents this was an emotional experience. It is important therefore that when you are using the films for any purpose including facilitating groups and training, that the work of EDG and the contributions made by the parents are fully acknowledged and credited by you and your organisation
The resource includes a short film (18 minutes) and six/seven short video clips.
If you are facilitating a group discussion then you can use the resource to -
It is important to share the reasons why the project was developed to 'set the scene' for your viewers.
EDG has been working with people with learning disability and their families for over 25 years. From this work we -
You can download a template programme timetable designed to help you plan and deliver a facilitated session. This can be for a stand-alone session or you can adapt it to fit within a wider programme you may be running for parent/carers.
Some of the following may be helpful to you, even if you are an experienced facilitator.
Given the nature of the topics included in the film, some people might become upset. This is a natural response to the issues being discussed. As the facilitator it is important that you think through the possibility of this before beginning the session and discuss with your group how they would like you to behave.
It would be useful to 'flag up' the emotional content of the film and clips, "some of you might find the experiences that the parents share in these clips quite emotional" and link it to developing and agreeing some ground rules at the start that can include –
Off camera Maureen, Hels and Claire pose a number of questions to the parents to get the conversation started. In the film they say very little but use eye contact, head nodding and some sounds to let the other person know they are listening. You will probably know this as 'active listening'.
Being listened to and heard is something that we all need to experience. Parents tell us that they don't always feel that this is happening when they are talking to professionals (or parents of non-disabled children and adults). It is important that we learn to give people the attention they need.
If you find yourself with a parent repeating themselves to you, it might be worth considering the following -
"Is this happening because they don't feel heard by me?"
"Do they feel they need to say this again because I have not acknowledged what they have said?"
“Am I too quick to come up with a 'solution' i.e. tell them what I do in their situation (which I'm not in actually), rather than listening to what they are saying and the feelings behind the words?"
"Am I 'checking out’ what I am hearing by saying 'this is what I heard, Have I got it right?’ If I do this and share my understanding we can catch any misinterpretations early"
This short film is 19.5 minutes long.
You are introduced to a number of parents, some in discussion with each other and some talking with Maureen and Hels from EDG. They talk about what was involved emotionally and practically in their adult children moving on from the family home. You will also see and hear about the Older Carer's Group that EDG set up.
I am seen talking with a couple of mothers about what they have heard the older parents say about their experiences. They go on to discuss how this relates to their own lives and their thoughts about the future.
There are a number of segments in the film; each is introduced by a title screen that captures something of the content within it.
You may wish to watch the film a few times and then look at some of the questions that follow.
The purpose of the questions is to help you to think about the issues raised by the parents - as a parent yourself or as a practitioner wanting to understand and therefore better support families you are working with.
The following questions have been designed to help you view the film in greater depth. You may feel able to respond to them after just one viewing or you may need to watch it a couple of times or in small chunks.
There are no right or wrong answers; this is an opportunity to respond to what is shared and for you to think about your own situation.
You may wish to work your way through all these questions or invite the group members to look at some questions in pairs or smaller groups and then feedback.
You might wish to capture their responses under the four headings of – Feel, See, Hear and Learn.
Writing up some of what is fed back within the wider group under these headings is a useful way to validate the feedback and helps to embed the learning by showing the comments visually.
Each of the following clips focuses on a particular aspect of ‘moving on’ for the parents we talked with. The clips build on the issues that they raise or refer to in the film.
Following each clip there are some questions that you may want to think about by yourself or within a group. A set of possible thoughts and comments - shared with us by parents and others can be found at the end of the questions. You might want to see if your thoughts and responses are similar or maybe you thought of something different, personal to you, that we haven't covered.
If you are running a session using the clips you might wish to use the thoughts and comments provided as a 'back-up' or to further stimulate conversation within the group.
Here I give an overview of the issues discussed in the film and clips. In particular I reflect on the experiences of Stella and Marie as they talk about their adult sons.
I directed the filming and so heard all of the parents talking. I was very struck by the couple Jean and Robin whose son was 53 (the age I was at the time of filming) when he finally left home. This contrasts so starkly with my own experience of leaving home at 19 and I go on to talk about my son Joe and the commonality of feelings between older and younger carers.
You may wish to think about these questions and then look at the thoughts and comments provided below.
Some thoughts and comments shared with us by parents/carers in individual sessions, focus groups and within the Older Carer’s Group
Feelings of concern and anxiety about the future
“Who will care for him/her?”
“Will they care for him/her as well as I do?”
“What will happen when I am gone?”
Typically developing young people begin to want to separate emotionally and physically from their parents. This is a natural process that generally begins in adolescence as the child tends to identify more with other young people rather than their parents and family. It can be challenging for all involved but as most parents will have experienced it for themselves when they were younger it is generally understood that this is what is happening and that independence is a natural goal as children move into adulthood within Western society.
Separation of parent and a disabled child doesn’t happen naturally. Most young people with learning disability are operating at a younger age and continue to need the reassurance and support of their parent(s).and in some cases family members who have a caring role. Some young people may indeed want some form of independence but need a great deal of support to develop the skills and confidence to be away from their parent(s) because of their learning disability.
I find it difficult to have to talk about people with Learning Disability in terms of deficits (what they lack) but the concern and anxiety that parents experience is rooted in our understanding of the impact of our child’s cognitive impairment on their –
“Typical young people start to move away from you, they get their own friends and want a life outside of the home. Our young people may want some of that too but they can’t always imagine it or articulate it”
“For my son, it doesn’t seem to be a concept he can grasp – too abstract – what he knows is being with us. In fact he becomes quite agitated when this is discussed at all”
“Sometimes we are called ‘over protective’, but can people not see how frightening it is to imagine her out in the world, trying to cope and possibly being taken advantage of?”
“It often feels ‘one step forward, two back’, we practice a task, a routine and he seems to have got it but thenwe’ll go out and it is as if he never did any of it before”
By first identifying the challenges for parents in supporting their child’s independence from them we can also see the areas that need to be developed. We can think about the young person’s strengths and the adult child’s abilities and build on these.
However, we need to understand that before we can do this we have to acknowledge the very real fears and anxieties that we have as parents and work on addressing these as well. It may seem overwhelming at times - so take a pause, but remember it is a positive step.
Support parents to -
Linda talks here about her determination that her daughter Kim has 'a life of her own'. Kim has two siblings, a brother and a sister. Linda was once a social worker. Some of you may be both a parent and a professional such as a nurse, teacher, care worker or an allied health professional such as an occupational therapist.
Reflective questions and thoughts on the challenges of being both a parent and working in a relevant profession
Some parents have told us that they have faced particular challenges when their own child has a disability because of their professional background, with other people assuming that they will 'cope better' and 'know what to do'..
"My own mother said 'why are you getting so upset? You're a nurse, you should be able to deal with this'. Looking after a patient is totally different from dealing with my son's disability, my emotions are involved. He's my baby!"
"You've worked with people with Down's for years, you'll be a natural at this"
Some parents have put themselves under that pressure too, believing that they should 'find it easier' when in reality of course, being a parent and being a professional are different things. Living 24/7 with a disabled child and being emotionally involved as you are when you are the parent is a very different experience from being professionally involved, however compassionate and empathetic.
Iris tells Maureen about the impact of health and aging on her as a carer.
The stark reality of Iris situation may be very hard for your participants to hear. You can best assess whether to address what is said after viewing the clip or move gently onto the next clip and include some reference to in the later discussions
Here Nadine talks about the particular challenges of involving her daughter in the future planning.
Asking this question provides an opportunity for parents and family members to share how they 'read' and understand their child's gestures and noises. Listening to each other can validate a parent's knowledge of their child and give ideas for similar things to look out for their in child.
This 'expertise' needs to be recognised and valued by professionals working with the families - asking about this knowledge can be a useful way to begin a new relationship with a parent and develop trust between you both.
Here Linda and Maureen talk about the meaning and consequences of choice.
Some parents tell us that this is a real 'bone of contention' with some support workers who they believe interpret 'choice' in the widest possible sense, without regard to the consequences of the choices that are made e.g. diet, dress etc.
Here Shona and Claire talk about their experience of support groups.
Parent to parent contact is viewed by many parents as extremely helpful. However, being in a group is not for everyone. One of the reasons we developed this project was to provide another way for parents to hear about other people's experiences, at their own pace and at a time that works best for them.
This last clip echoes the theme of this project - to begin the conversations as early as you can, certainly well before you need to be making decisions.
We hope that you have found this on line resource useful. Thank you for taking the time to visit this page and view the films. Thank you in advance for your feedback.
Parents and family members
We hope that viewing these films and hearing about other people's experiences has reminded you how natural it is for you to have any feelings of anxiety and concern. We hope it encourages you however, to start the conversation about this or build on what you may have already done. We know the real work is done by you but hope that the information here supports you in that and gives you confidence to address 'moving on' for your child and family.
We would really like to hear from you - your views on the resource, your experiences more generally - please give us your feedback. to improve this information and support other parents and family members.
If you are using the information to facilitate a group discussion we would really like to hear how the materials worked for you and your group. Please do give us your feedback. We would also like to hear how you feel about this resource in terms of your professional development.
We welcome your feedback about this project. We would also like to hear your personal experiences and views, particularly if you feel we have not included them here.
If you want to share these with us please complete the feedback form below and we will add them (anonymously) to this programme when we review it.