Extreme Caregiving: The Moral Work of Raising Children with Special Needs by Lisa Freitag

Modern medical technology has made it possible for babies to survive with conditions that would have ended their lives only half a century ago. But complex health care interventions and regimens are not enough. These children require support, caregiving, and constant vigilance from their families, especially their parents. Sometimes referred to as children with "special needs," their dependency and vulnerability may stem from genetic disorders, premature births, serious accidents, or illness. This includes conditions such as severe autism spectrum disorder, Down syndrome, hypoxic ischemic encephalopathy, Trisomy 13, Trisomy 18, Fragile X Syndrome, spina bifida, and brain damage...