An inquiry by the Foundation for People with Learning Disabilities in 2002 highlighted the severity and impact of emotional distress among young people with learning difficulties. In response, the foundation provided funding for four action research studies to find ways to improve emotional and mental health support for young people with learning difficulties. The full report of these studies was launched earlier this year(1) and this article features just one of the issues highlighted by this work, that of family carers and their own emotional needs.
“Parents in our situation get so weighed down by all the responsibility, and loss of identity that we need a kick start.” Those were the words of Rachel Mason, a parent of two autistic sons, who lives in Somerset. This is what she has to say about her own experiences: “There was a point at which I realised my life had been taken over by caring for my children. When the autism kicked in, at around two and a half, the boys completely changed. They were much louder, disruptive and violent. Our invitations disappeared. I would invite people over, but the excuses kept coming in. My visitors sat on the edge of the sofa with their coats on. At that point, I realised that everything I used to do – having friends over, going out for the evening – had changed. I had lost my friends, my family. I was too mentally exhausted to focus on myself.
“Back then, my husband Dave and I didn’t even bother to try to talk with each other. When we finally did go out to the pub, the first time we had respite care, we sat down with our drinks and we literally didn’t know what to say to each other. We could only talk in two or three-word sentences – the awkwardness of holding hands, and trying to get that intimacy back again was really difficult.”
Mason took part in one of the four studies, Mind the Gap. It was carried out by researchers from the Norah Fry Research Centre as a partnership research study with Somerset social services. It looked at what happens during the transition phase, and we worked closely with Connexions Somerset.
We found that distress is not limited to the young people themselves, but can affect the whole family. While young people told us that friendships were the most important part of their support, parents told us about their own emotional needs. They too need a chance to focus on themselves, so that they are strong enough to support a troubled son or daughter through the transition phase.
So often, parents of children with learning difficulties are given information and advice simply to equip them as advocates, fighters and campaigners. In Mind the Gap, we set out to find ways to support parents finding their lost identity and developing their own resilience. As Mason said: “Parents like us are running on empty. We need to re-charge ourselves, before we can do anything else.”
With Mason as the main inspiration, we decided in Mind the Gap to test her ideas in a different kind of support group. This group, which we called “Our Link to the Future”, was co-facilitated by Mason and by Alison Short, an established facilitator skilled in person-centred planning and supporting family members. The group took the ideas and tools of person-centred planning and applied them to parents themselves. The main aim was to adapt the principles and practices of person-centred approaches, in order to focus on parents in their own right.
Numerous person-centred approaches were offered to the participants to help them focus their thinking and take the first steps to making changes in their own lives. The course focused initially on the parents themselves as people. We used approaches that helped people reclaim what they liked and admired about themselves (taken from essential lifestyle planning) and their dreams. We enabled participants to tell their own story and find and celebrate their gifts and skills.
From this we went on to support the participants to be able to identify the types of things that are important to them as individuals in their daily life and what people need to know and do to best support them. Once we had done this the course moved on to looking at how the participants could use this knowledge with others – focusing on counselling methods and understanding their own communication styles. The course concluded by giving participants opportunities to use person-centred approaches to problem-solve and explore how their new self-knowledge could help them deal with others differently.
This was a group where parents and carers could leave their responsibilities at the door and concentrate on supporting themselves as people first. One of the key features of the group was that participants were encouraged not to talk about their children first.
Mason said: “Because I have been doing nothing else for so long, people assume that the only thing I will want to talk about is my boys. But this course gave us all new opportunities, to do something for ourselves. You need to recognise when the doors are opening and the lifelines are offered to you. When you are so depressed, you tend to pass by the open doors because you are not tuned into it.”
As co-facilitators, Mason and Short shared their expertise: Mason as the content expert and Short as the process expert. Both feel they have learned and developed skills through this partnership, Mason in growing and developing as a trainer and Short in her continued learning about supporting families.
Each of the seven participants was interviewed after the course, and with three of these we were able to compare their feelings expressed at pre-course interviews. The main aspects of the course that they appreciated were:
Here are some of their comments:
“It’s embarrassing to let your emotions out. Usually I don’t!”
“Someone asked me to do something, and I said ‘no I can’t’, and she heard me and accepted me. I was so shocked, that had never happened before.”
“It’s given us the confidence to go and ask people – professional people – we are not going to accept a lack of help this time.”
The ethos of involvement and active support is part of the service culture in Somerset, and throughout the course we worked closely with a voluntary organisation called Somerset Impact, which has good contacts with a network of families and parents. After a final conference for the whole project, a steering group is taking forward the findings from our research, and so we hope that the approach to emotional support for parents can be continued, in Somerset and elsewhere. CC
Val Williams is a researcher at the Norah Fry Research Centre, University of Bristol. She is especially interested in inclusive research, involving people with learning difficulties and family members in research studies that can lead to positive action for their lives.
Rachel Mason is a parent of two autistic sons, and lives in Somerset. She has taken part in many consultation and training activities in Somerset. Since this project she has qualified as a service broker for other families and individuals with learning difficulties.
Training and learning
The author has provided questions about this article to guide discussion in teams. These can be viewed at www.communitycare.co.uk/prtl and individuals’ learning from the discussion can be registered on a free, password-protected training log held on the site. This is a service from Community Care for all GSCC-registered professionals.
This article highlights the emotional needs of parents of young people with learning difficulties. One of the strands in Mind the Gap, as an action research study, was the development of an approach to apply person-centred approaches to the needs of parents themselves. Co-led by a parent facilitator, this study demonstrated how important it is for parents to regain a sense of their own identity in order to be strong enough to support their child.
(1) Making us Count, Foundation for People with Learning Disabilities, 2005
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