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Most grandparents, on hearing the news of an impending new family member, are thrilled and excited, perhaps entertaining daydreams of fishing trips, sleepovers, cookie baking, and college graduations. But for some, those dreams are destined to undergo profound adjustment. In Revolutionary Grandparents: Generations Healing Autism with Love and Hope, collected by Helen Conroy and Lisa Joyce Goes (Skyhorse Publishing 2016) 19 grandparents describe the journeys they have shared with their families from the time of diagnosis to the present.
From denial to anger and all of the other stages of grief, these brave caregivers describe how their infusions of love, sacrifice, time, hope, and moral and financial support have enabled their sons and daughters to offer their children with autism spectrum disorder the best chance for reaching their fullest potential if not recovery. As one grandparent writes: “(autism) drops into your life like a bomb and takes no prisoners.” The writers describe their grief for the loss of the grandchild they expected and their pain at witnessing their own child’s grief. They talk about hope for a cure, the emotional roller coaster of improvements and setbacks. They talk about making sure siblings receive their fair share of attention, knowing that an autism spectrum disorder affects all members of a family. They talk about the complications of babysitting so that parents have time to recharge their batteries and their relationships. They talk about the pain of watching loved ones suffer and marriages break apart under the strain of constant caregiving. They talk about difficult behaviors but lots of love and family fun as well. They talk about the loss of faith in the world as a safe and healthy place.
These writers share membership in the Thinking Moms’ Revolution, an advocacy group made up of parents who were not satisfied with the offerings of traditional medicine in addressing their children’s needs. (Some pediatricians even advised eventual institutionalization!) Many of their children have taken it upon themselves to tirelessly research and test unproven dietary, supplement, medication, behavioral, and other modalities in the hopes of curing their affected youngsters.
In these pages there is little discussion of validated, evidence-based causes of autism such as genetics, the association with advanced paternal age, or a first trimester viral illness in the mother. Many of the writers make a strong connection between childhood vaccinations and the onset of troubling symptoms and regression of development, in poignant detail. Some refer to the autism “epidemic.” Several of the writers believe that the pharmaceutical companies and US government agencies have conspired to keep the true causes of autism hidden from the public. None of these beliefs is backed by solid evidence, which will, for some, negate the important supportive messages contained in the essays.
Grandparents offer valuable advice to grandparent readers: don’t deny the diagnosis; don’t favor one grandchild over another; respect and adhere to all treatments being tried; help parents find community resources; help with housework, cooking, childcare, and finances if able; take care of oneself as well as one’s family. These writers have retired and moved to be closer to their children, have put aside retirement plans to continue working so as to provide financial support, moved in with their children, and taken their children into their homes.
One minor quibble: many acronyms such as HBOT and PANDA are not identifiable to persons outside the autism community. It would have been enlightening to learn the nature of some of these protocols and diets.
This book is highly recommended for grandparents of children with autism for the emotional and practical support that these essays offer. To dismiss it out of hand because of the point of view of the writers would be a mistake. For this reason it will probably be ignored by members of the helping professions, which is a shame. These grandparents are heroic, and we all need more heroes in our lives today.