ABSTRACT
When children don’t achieve social or developmental milestones according to expectable schedules, parents and guardians clamor for explanations. Many turn inward: questioning their lifestyles before and during pregnancy, doubting their parenting decisions, second-guessing the treatments, medications, and interventions they have chosen to pursue and those they have chosen to skip. Even though the overwhelming majority of childhood disability and chronic illness is unrelated to the ways children are raised, powerful feelings of guilt, self-blame, and failure bear down on parents and guardians. Guilt and shame also hover close by as parents and guardians struggle to balance the extreme needs of the disabled child with the needs of typically developing siblings, and with making time for income-earning responsibilities, household demands, and self-care. If a child’s disability becomes unsustainable in the home, causing the child or other family members to be unsafe, the prospect of residential placement is yet another trigger of feelings of guilt and failure. From this chapter, readers will collect strategies to empower parents and guardians, helping them learn to value their efforts and achievement, honor their own hard-won expertise, access resources for support, and believe in themselves as effective advocates for their kids.
