DOCUMENT

RESEARCH Dr Meg Smith is a Cerebral Palsy researcher (prompted by being the mother of a teenager with CP), a nurse and a member of the Cerebral Palsy Society’s Executive Committee. Despite being the most common disability worldwide, this was the first research of its kind in Aotearoa, and it revealed some important findings. Rowing upstream “Rowing upstream” reflects both the work and worry mothers experience when parenting their child with CP, and the fighting and advocating they do to get support for their child and themselves. This theme had four sub- themes: keeping the boat afloat (how much harder parenting was); paddling through the ACC rapids (the exhausting battle to get ACC support); navigating the school currents (school experiences and reduced government support); and lost in the funding stream (variable and inconsistent funding information). Mothers with children under ACC were relatively satisfied with assistance but suffered significant negative impacts from the battle to secure it. Winning but not as expected “Winning but not as expected” captures mothers’ eventual sense of accomplishment, fuelled by gratitude, personal growth, and community support. While different from their initial expectations, mothers felt positive about their parenting journey and embraced a redefined sense of success. Mothers felt gratitude and pride for their children and pride in themselves. Many were living life at a slower pace where small things were valued and celebrated. Mothers discovered a community with other parents whose support was likened to a warm blanket. For many this was a game changer, a forum to share information, which for some led to receiving more government support and resources. Despite being the most common disability worldwide, this was the first research of its kind in Aotearoa, and it revealed some important findings. It provides valuable insight into the lives of 15 mothers who adapted to a different way of parenting, a journey marked by trauma, challenge, connection, and joy. It highlights the inequities in the health and education systems in Aotearoa New Zealand and uncovers the trauma mothers have experienced. The findings are intended to inform policymakers, health professionals, and other stakeholders to enable improved support for families raising children with CP and their whanau. A big thank you to the mothers who responded to my interview request and who generously gave me their time, opened their hearts, and bared their souls, taking me on an incredible journey and sharing some heart wrenching stories. Such resilient, strong, dedicated, and resourceful parents. Thank you also to the Cerebral Palsy Society of New Zealand and Te Whatu Ora for the financial support. MARCH 2026 THE REVIEW | 15