Mothers who listen with more than ears: The phenomenological experience of the non-verbal communication between mothers and their child with complex cerebral palsy

In England, every 1000 babies born 1 will be left with complex cerebral palsy affecting all limbs and internal organs. Of those children by age 12, 43% will have no consistent way to communicate with the world. Empirically, many mothers of these children self-report that they can communicate effectively with their children in these cases in a way that possibly only the mother understands. Understanding the mother’s experience of living with a complex cerebral palsy non-verbal child is important for professionals and the society that supports them.
The aim of this research is not to prove or disprove this phenomenon but rather to explore the lived experience of mothers with disabled non-verbal cerebral palsy children, validating and giving a voice to an otherwise isolated abnormal form of mothering.
A homogenous sample was collected made up of 8 mothers who had non-verbal complex cerebral palsy as a result of Hypoxic Ischemic Encephalopathy at birth. The age range of the children was not > 3 and not <16. Interviews took place on a video link, semi-structured interviews were done and the six stages of a Heuristic Inquiry were used to analyse the transcribed data.
The results produced 7 universal themes: ‘The Choice to Communicate,’ ‘Communication Over Time’, Impediments to communication’, ‘Certainty and Uncertainty’, ‘Embodied Communication’, ‘Being Towards Communication’, and ‘Being in the World with Others’. These themes capture the essence of the experience that mothers have when confronted by a baby that is diagnosed with multiple disabilities and unable to verbalise. The findings that emerged are fundamentally existential and they are examined through an existential lens.