Respond project for parents with learning disabilities

Jake Spencer from London, UK works for charity Respond. Here he describes their project to support parents with learning disabilities.

Respond, a charity based in London, UK, was set up in 1993 to offer counselling and psychotherapy to people with learning disabilities. We offer weekly individual sessions and also psychotherapy groups. We work with people who have experienced a variety of traumas including sexual abuse. We also offer assessment and treatment of those who have gone on to abuse others.

Psychotherapy can be helpful to people who have had traumatic experiences. It can give people who have a learning disability an opportunity to explore their feelings and tell their story, in their own way and in their own time. They have the chance to build a trusting relationship with another adult who is there to listen to them and be with them once a week for a minimum of one year: a space that is theirs and that is safe, confidential and reliable. Often the people we are working with have suffered many and repeated traumas in their lives including neglect, physical, sexual and emotional abuse as well as losses and separations from family and loved ones. This may be the first time that people have taken the time to really look, listen and understand what may be behind the constantly smiling face, the difficult behaviour, the aggressive episodes, the inability to make eye contact or the inability even to speak. Over time therapy can help people to deal with traumas from the past that still affect them in the present. It can help build a sense of identity and increase self-esteem.

A new project for parents

In October Respond set up a project for parents. The project offers therapy to people with a learning disability who have issues around parenting. It may be that they have had children taken into care and need to come to terms with this to decide on whether they wish to try to have a family in the future. It may be that a parent still has care of their children but that issues from their own past are preventing them from meeting their children’s needs to the best of their ability. In the following two examples, alternative names have been used instead of the parents’ real names.

Susan’s daughter disclosed sexual abuse by a friend of the family. It came to light that Susan, a single parent with a learning disability, had also been abused in the past. Hearing of her daughter’s abuse brought back her own feelings and made it difficult for her to manage as she became depressed and angry. She also found it hard to manage her daughter’s feelings in an appropriate way. Having therapy enabled her to come to terms with what had happened to her as a child and allowed her to function more, effectively as a parent.

We have discovered through talking with other professionals that there is a growing awareness about the practical skills a person with a learning disability needs to learn to parent effectively. There is also a developing understanding of how different methods need to be used to pass on these skills in a way that they can be accessed. However there is less awareness and understanding around the emotional needs of the parent and how this may be impacting on their ability to respond to their child’s needs or indeed, may be making it difficult to even learn skills.

Catherine was at risk of losing her child because she was finding it difficult to manage her child’s behaviour. She seemed unable to take on board the advice and skills that professionals felt she needed to care for her two year old who was now developing a strong and forceful personality of his own. Catherine would sometimes become angry with those who were trying to teach her but mostly simply switched off from the experience. She seemed unable to take anything in. Professionals felt that it was her learning disability that was making this process difficult and tried different approaches with not much more success. Information, seemingly taken in would later be forgotten. It was not possible for her to begin to work with professionals on practical skills until it was acknowledged how difficult this process was for her. Her experiences of learning throughout her life had left her feeling humiliated and stupid. Catherine had also spent time in the care system having been removed from an abusive family. She was desperate to be the mother she had never had but she had such a shaky sense of self that even the best intended advice undermined her ability to care for her child and be a mother. Catherine needed some time to process these feelings and it was found that when she had a therapeutic space for herself alongside the practical skills teaching; she gradually became more able to acknowledge that she did need help. Over time she became more able to learn and take advice on board without it crushing her fragile sense of herself as a mother.

Parents who do not have a disability usually find it hard to parent at some point in their child’s development, if not frequently. When parents, with or without disabilities, have not had their own needs met or not experienced the consistent care they deserved as children, they will not have internalised a good parental figure to draw on as a resource. In this situation the experience of parenting their children can become even more fraught. Often when a parent with a learning disability has difficulties, people do not see beyond the label of disability; they fail to recognise that it may well be emotional traumas that may be hindering ‘good enough’ parenting rather than cognitive impairment. Whereas parents without a learning disability may be offered emotional support, counselling or therapy when they are having problems dealing with their children, this is rarely considered for parents with a learning difficulty. In our experience, offering people with learning disabilities the chance to process past experiences can make a difference to the way someone is able to function in the present.

Discussion and networking

In February 2001 Respond held a seminar, open to professionals working with parents with a learning disability, to discuss some of these issues and to find out about our project. Sixty people attended the seminar. In addition to talks from myself and Tamsin Cottis, Assistant Director of Respond, about the thinking behind the project and the work that we offer, there was a lively and informative discussion. People then had the chance to network in a more informal way. Feedback from the seminar indicated the need for more forums to discuss the issues involved and that professionals would like more training around parents and learning disability. As a result, we ran the seminar again in March. We are also offering a one-day training, which will take place at Respond on July 6th 2001. This training day will also be available for teams to buy into their workplace. We are still taking referrals for therapy work for parents with learning disabilities and for parenting assessments. For further information contact Respond - telephone: 020 7383 0700, website: www.respond.org.uk.

First published in Disability, Pregnancy & Parenthood international, Issue 34, April 2001.

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