By Mari Caulfield & Teresa Dempsey with thanks to Dr. Rena Lyons NUIG Ireland

Written from the perspective of a working speech and language therapist, in Ireland.

Exploring narrative and storytelling in support of healing, healthy relationships, and supportive parental networking

“As we make our way through life, we have continuous experiences and dialogic interactions both with our surrounding world and with ourselves. All of these are woven together into a seamless web, where they might strike one as being overwhelming in their complexity. One way of structuring these experiences is to organize them into meaningful units. One such meaningful unit could be a story or narrative. For most people, storytelling is a natural way of recounting the experience, a practical solution to a fundamental problem in life, creating reasonable order out of experience” (Moen, 2006 p1).

Strengthening families, and creating strong relationships with parents mark a key role in our partnerships with parents as we support developmental goals for the children we serve. In our everyday work as therapists working with children and families, we play a key role in strengthening parents, facilitating meaningful outcomes. Parents are the true experts of their child. Parents are accepted as partners with professionals in assessment, program planning and advocacy efforts (Bailey & Powell, 2005).

Speech and language therapists have increasingly recognized the value of sharing and transferring skills to parents so that everyday interactions and communication skills can be supported in a consistent and functional manner (Bray, Ross & Todd, 2006).

Look into my Eyes is the name of a day of sharing, by, for and with parents of children with special needs, which has been running since 2003, in Galway, Ireland. It provides a place of information sharing, revelation of life stories and a space for building friendship & support with those sharing similar parental experience. Such involvement leads to camaraderie and the emergence of parental visionaries and role models. It inspire hope and focuses on abilities not disabilities (Goodley Tregaskis 2006).

In this summary, we present feedback from 27 parents who attended one of these days. Five Parents gave presentations on that day about their experiences of having a child with special needs. A further two sessions were included in the day by a Clinical Psychologist, who supported a session called Minding yourself – exploration & reflection of minding ourselves as parents, as well as our children.

 

 

The invitation to the parent presenting is to reflect on & share their golden nuggets of experience with the other parents who attend. It is based on the belief that parents know best. This invitation offers parents the opportunity for reflection upon experience, achievements and goals, and assumes parental expertise in the area of lived emotional experience. Parent’s comfort is paramount to the presentations. Some feel more comfortable using low-tech media, talking from notes, and others feel more comfortable with powerpoint computer presentation. Many presentations are supported with video examples to support points in the presentation. The most unique aspect is that parents are the teachers. They share their experiences, life stories and reflect on their learning, values & parental journey. Their generosity of spirit is always striking.

“Self observation is essential for advanced learning. The ability for self-observation emerges from the ability to observe oneself and another in relationship” (S. I. Greenspan, 2008). We invite parent’s self-observation and reflection upon the experience of parent-child relationship, upon the challenges and celebrations as well as what really helped the child develop over time. Through this process, parents become more aware of the strengths and challenges of social emotional interactions and communication differences, together with how they, as communication partners can best support those interactions.

The overall objectives of the day are to celebrate the young child’s relationships and to explore together how parents can encourage interaction, development and real connection through shared attention and regulation, engagement, purposeful communication & social problem solving opportunities with their children. Sharing and give-and-take between parents has always played a large part through discussion, lunch, and coffee networking too!

Both parent presenters’ and parent attendees’ feedback in a previous workshop helped to identify how the day supported both attendees and presenters. The sample consisted of 25 anonymously completed evaluation forms which included closed and open questions. Some key findings were evident from the evaluation of this small sample.

Quantitative data analysis methods revealed that:

• 75% of all respondents (parent presenters and attendees) rated the day as excellent. The remaining 25% rated the session as very good.
• 100% of parents that attended reported that they would recommend the day to other parents and that the day met their expectations.

 

Parent presenters were invited to engage in post-reflection.

• Comments included: “It made me really think what are the things that work… also, it showed me how far along my children have come.” “It allowed me to spend time with my story.”
• “Preparing as a couple was very positive for us… and in general, preparing helped me appreciate all that we have done and all that my daughter has achieved.”
• Parents also reflected back on their presentation in relation to their child. One parent noted “observing my child through the lens of golden nuggets has been insightful.”
• Parent presenters emphasized some key principles within their interactions with their children such as waiting, using affect, and staying in the moment.
• They also expressed the importance of “Holding true to yourself as the true expert /champion of your child” and “Following your instinct.”
• Presenters reported that they felt happy, great emotion, and relieved following their presentations.

 

Key Themes identified by parent attendees are summarized below:

 

A breakdown of the themes of  Golden Nuggets, which were shared within their narratives included:

• Happiness and family time are high in value. Unexpected friends arrive to support the family. These friendships are as important as extended families.
• Learning to get into play mode again is key. It is more about my learning and my having to do the work, not my daughter!
• Conversational language and word recall needs everyday support. Keeping my child engaged is what makes the difference.
• In relation to the important issue of self-care, (one parent shared golden nuggets she found to be supportive)  – making connections with local associations, building a circle of care around the family, learning to be an advocate and expanding trust in society.
• Support engagement: We have to play on their terms. If picking up leaves is what engages our child, then we pick up leaves!
• Never underestimate what your child is taking in even though they are not giving it back. It may come back after several years, you never know how the skill emerges.
• Say the words they would say if they could.
• Roughhousing, movement and height all increase the interactions as well as tickle games and foot rubbing!

 

Personal narratives serve a function. Some narratives may simply be entertaining stories, but many narratives serve the function of defining self, defining relationships, and regulating emotional experiences through drawing moral and life lessons…narratives provide a framework for understanding and evaluating human experience (Fivush et al., 2011).

Involvement in parent-to-parent support groups has been shown to increase parent’s positive perceptions of their child with a disability, particularly when the supporting parent has a positive attitude (Singer et al. in Greer et al.1999). Within Hanen training for example, the parent group itself provides informal support through the sharing of experiences with individuals in similar situations who can genuinely empathize (Girolametto, L. & Weitzman, E. 2006). Our ongoing provision of positive group experiences within our speech and language therapy practice provides opportunity for sharing important narratives and can have far reaching effect.

With Thanks to all parents …. And to Dr. Rena Lyons NUIG Ireland for her support. 

 

References:

Aniruddha, P.& Chatterjee, A.K (2006). Parent-parent counseling – a gateway for developing positive mental health for the parents of children with cerebral palsy. International Journal of Rehabilitation Research, Volume 29, Issue 4, pp 281-288.

Bailey, D. B. & Powell, T. (2005). Assessing the information needs of families in early intervention. In M. J.Guralnick (Ed.), The developmental systems approach to early intervention, 151– 183. Baltimore: Paul H. Brookes.

Bray, M. Ross, A, Todd, C (1998). Speech and Language Clinical Process and Practice. Chichester: Whurr Publishers.

Fivush, R., Habermas, T., Waters, T., & Zaman, W. (2011). The making of autobiographical memory: Intersections of culture, narratives and identity. International Journal of Psychology, 46(5), 321-345.

Girolametto, L. & Weitzman, E. (2006). It Takes Two to Talk: The Hanen programme for parents.: Early Language Intervention through caregiver training. In R Mc Cauley & M Fey, Treatment of Language Disorders in children. Brookes Publishing.

Goodley, D. & Tregaskis, C. (2006). Storying disability and Impairment: Retrospective Accounts of Disabled family life. Centre of applied Disability Studies, University of Sheffield School of Education UK

Greer, Grey & Mc Clean (2006). Coping and Positive perceptions of Irish mothers of children with intellectual disabilities. Journal of Intellectual Disabilities 25: 105-118.

Moen, T. (2006). Reflections on narrative research approach, International Journal of Qualitative Methods, 5(4), 1-11.