Keys to the Door

A resource showing parents talking about how they feel about their disabled children (young people and adults) leaving the family home and living independently from them.

Introductions

Parents/Family Members

Keys to the Door - An Introduction

"Where did the idea come from?" - Hels and Maureen

Click here to read the dialogue between Hels and Maureen

Maureen Martin

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.

Claire Edwards

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).

My Background

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.scot.nhs.uk.

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.

For information on Guardianship visit www.publicguardian-scotland.gov.uk or contact FAIR (Family Advice & Information Resource) on 0131 662 1962 or at fair@fairadvice.org.uk

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.

How can this resource be helpful?

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.

What is "Keys to the Door" all about?

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:

Parents and family members who want to think about the issues and hear about other parent/carer experiences
Professionals working with families of disabled children, young people and adults

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.