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Family Reflections on a Lifecourse Journey after Neonatal Intensive Care: Neurodiversity, Enablement and Hope

Michael E Msall1

  • 1Section of Developmental Pediatrics, JP Kennedy Research Center on Intellectual and Neurodevelopmental Disabilities, Comer Children's Hospital, University of Chicago Medicine, 950 East 61st Street Suite 207, Chicago, IL 60637, USA.

Children (Basel, Switzerland)
|February 24, 2024
PubMed

In 1969, my sister Christianne was born late preterm with a genetic disorder and given a very pessimistic prognosis. I will describe, from a family perspective, some lifecourse lessons about neurodiversity using the World Health Organization International Classification Model of Functioning (WHO-ICF). This model emphasizes that, in communicating about the complexity of outcomes of disability, attention must be paid to facilitators and barriers for optimizing health, functioning in daily life, and participation in the community. I will describe several developmental lifecourse lessons learned in negotiating fragmented systems of health, education, and community care. I will suggest ways to improve physician-parent communication, focusing on enablement to decrease a family's sense of isolation and despair. I have benefitted from my parents' archives, discussions with all my seven sisters (including Christianne), and discussions with my brother and sister-in law. They all have provided invaluable feedback from a family perspective during Christianne's lived lifecourse journey with neurodiversity.

Keywords:
adult outcomescounseling about developmental disabilityenablementfamily supportfunctioninghigh-risk infant follow-uplife course health developmentneurodiversityparticipationpreterm birth

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