Parents of disabled children have been supported to share their experiences through stories, thanks to Te Whanau Kotahi Community Trust.
Te Whanau Kotahi Community Trust is a child development service in the Bay of Plenty. The trust ran a consumer storytelling training programme for some of the families they work alongside. Te Pou’s Consumer Leadership Development Grant was used to fund the training and Annick Janson, of Ecosynergy Group Ltd, developed and facilitated the programme.
As part of the programme, two workshops were held with 25 parents. Parents were encouraged to share their stories and give examples of how families can build leadership in the areas of self-determination, family leadership, peer leadership and community leadership. Leadership in these areas can assist families to advocate for their children and enable a good life for their children. The parents identified 10 stories of lived experience to be filmed.
Barry Davis, General Manager of Whanau Kotahi says that developing the stories gave parents the opportunity to articulate and reflect on their experiences. Parents were interested in being part of ongoing leadership and networking activities. Parents were also interested in sharing their stories widely for the benefit of other parents with disabled children, to influence agencies and the community.
Suzy Brown, a mother of four with two children with different abilities says the training gave her an opportunity to form friendships with other families whose children are special. Sharing her story about exclusive education and hearing other people’s stories gave Suzy the opportunity to have some closure and the strength to move forward. She hopes that her story will give other families strength when facing similar issues.
Suzy says the training has increased her confidence and she now reaches out and talks to other parents and makes friends, particularly families with children with special needs. She has been in regular contact with the friends she made through the programme, and they support and encourage each other.
Suzy says she seems to be advocating “more and more, not only for my family, but also helping others too.” She believes there are many other stories which need to be told to help other families.
“Caring for a child with special needs can be very, very isolating, so videos with helpful advice or stories … are invaluable as they can be accessed any time”, says Suzy. Taking part in this project helps the people who watch the videos, as well as the parents who took part.
Ellie Griffin, a mother of three boys, one of whom has been diagnosed Cardiofaciocutaneous (CFC) syndrome and autism, says the project is hugely relevant as parents know their children best and can provide stories and perspectives which can benefit other families in similar situations. Although the filming was nerve-wrecking for Ellie, she received good support from Te Whanau Kotahi and Annick, and felt more confident and comfortable sitting in front of a camera towards the end.
Ellie has always seen herself as her son’s advocate and she welcomed the opportunity to share some of their journey in a positive way. She gained a lot from watching the other stories and listening to other families and how they deal with challenges. Ellie thinks this project offers support to families. It’s reinforced her belief in the need for an inclusive society which supports parents with children with special needs.
“This enables families to concentrate on being parents and enjoying their children”, says Ellie. She would like to see the concept behind the project being applied to other areas such as sharing stories among families who have adult children who are moving away from home and/or into employment.
The stories have given Te Whanau Kotahi more insight into the experiences of parents.
“This is leading to reflection on the way governance is positioned in terms of the policies we have, the power of the policies and how that is translated into service delivery and that these policies enable the parents to choose for themselves” says Barry Davies. The information and learning from the project will be used to reinforce the trust’s training and development work with their own team and other support agencies.
The stories were shared on the trust's website, in their newsletter and on social media. One story reached over 2,500 people within two weeks of being posted on Facebook.
“As a participant I believe the change stories project has facilitated the building of new networks. It is also a useful tool for giving a first hand insight into some of the challenges and celebrations that families face. Making these stories available not only to other families but also to groups who work with people who live with disability and their families will hopefully in some way inform their practices as well.” - Training participant