Having a child diagnosed with a disability can be devastating for parents. The current medical view that disability means something is lacking may add to this dilemma. An associated loss of hope may then get in the way of parents realizing their dreams for their child. To cope with pain mixed with the joys of parenting children diagnosed with one or more disabilities, many parents turn to rewriting whatever narrative they were given by professionals. This strategy parallels a form of resilience theory wherein contexts and environments fashion developmental outcomes more than biology. Academic writing has examined parents’ storylines for their child living with a disability—including alternate ones that oppose the “status quo.” Still, little scholarly writing has addressed how parents unschooled in rewriting of undesirable narratives might learn this skill. The present article shows how having tools to craft one’s own storyline is vital if children with disabilities and their parents are to thrive. Parents of children with disabilities who dislike the script handed to them at or after their child’s diagnosis—and yet lack method or permission to write their own—deserve guidance and support in this task.
|Keywords:||Child and Family, Developmental Delay or Disability, Medical Narratives|
Doctoral Student, School of Leadership Studies, Fielding Graduate University, Santa Barbara, California, USA