Fathers' Stories of Parenting Disabled Children
One in every 150 American children has autism, the Centers for Disease Control reports. Autism is just one of twenty conditions described by this book’s contributors, each fathering a disabled child.
The writers, all from the United Kingdom, share experiences universal to parents of children with disabilities. They feel helpless when faced with the diagnosis. They endure sleepless nights in hospitals with extremely sick children. They suffer disintegrating marriages. They express regret, sorrow, and anger for the impact that their disabled child’s needs have upon siblings, careers, and social lives. At the same time, they rejoice when their children attain unexpected developmental milestones. Their stories evoke strong emotions—from tears to laughter.
As leaders in the UK-based organization Contact a Family, editors Harrison and Henderson have worked extensively with parents of disabled children. Leonard, an editor and contributor, is a physical education teacher and the parent of a disabled child.
Certainly this book fills a literary void for these fathers. Many said they felt shut out by support networks and services organized for mothers. Kevin, for instance, became his son’s sole caregiver after his marriage broke up. He writes that he often tells his child’s health care professionals, “Mum has no involvement—she sees him a couple of times a week. I’m the main carer, so come and tell me what’s going on.”
The book shows how men sometimes rely on career tactics to manage stress when fathering a disabled child. “Every minute of every day, tasks had to be performed at exacting standards and timing—my strategy for dealing with the situation,” writes Phil. “If Cameron died, then I couldn’t be faulted. As in my previous job, if the project failed, it wasn’t due to my overlooking a small detail.”
When Paul’s son’s condition is never diagnosed, he grapples with the unknown as well as guilt for his inability to fulfill his role in the “family culture” imposed by society. “Some protector I had been,” he writes, “failing to prevent this enormous hurt to my precious wife and child. This helpless, blue-grey baby, with his shaven head, assaulted with lines and drips…some protector, some father, I had been, unable to make things right or explain things away.”
Because each dad’s story is presented in his own words, American readers may stumble upon the British idioms. A glossary of both medical terms and UK expressions provided at the end offers some help.
Readers should be touched by this intimate glimpse into the lives of these brave men. Like most dads, they are just trying to provide a “normal” childhood for their children. And while these dads are indeed “different” from the mainstream, their stories will certainly hold valuable lessons for every parent who reads them.