Forfeiting All Sanity: A Mother’s Story of Raising a Child With Fetal Alcohol Syndrome

Ashley Taylor is a “beautiful, blonde, blue-eyed angel” in the words of her adoptive mother, Jennifer Poss Taylor. Ashley Taylor also has profound brain damage, done prior to her birth, the result of prenatal alcohol exposure. In other words, because her biological mother drank while pregnant, the beautiful eldest daughter of Jennifer Poss Taylor and her husband David, faces a lifetime of struggles with behaviours, physical and neurological challenges, all stemming from a largely preventable birth defect. Forfeiting All Sanity is a quick and educational memoir or perhaps, a momoir, about one child’s struggle with fetal alcohol syndrome. Ashley cannot tell her own story as her IQ falls below 80 and she is developmentally delayed as a result of her brain damage. In Canada, it should be noted that we have generally been using the term FASD, Fetal Alcohol Spectrum Disorder, to describe the array of birth defects arising from prenatal alcohol exposure. In Canada there are an estimated 300,000 people living with FASD. My youngest daughter is one of them. In the United States, another common statistic that is quoted is that of 40,000 babies born each year with FASD. Children diagnosed with an FASD have IQs ranging from 72 upto 120 and a good number of those function within the normal range of intelligence. But the impairments can be apparent to areas of memory, impulse control, emotion regulation and social difficulty. As well, thoses with FASD can have heart, kidney, lung, vision and hearing abnormalities. They often have sensory integration dysfunction. Forfeiting All Sanity is quite compelling and frankly I couldn’t put it down. There is little out there for parents of children diagnosed with FASD to read regarding this devastating disorder. Our entire community has already responded keenly to this new book. Taylor is a savvy entrepreneur and very motivated to get the word out regarding FASD. She is also a deeply religious and spiritual person who clearly finds strength to deal with the challenges of raising two special needs children through her church and beliefs. I am certainly not criticizing that in any way. People who parent these really difficult and also, at times, rewarding children, need to find their source of support somewhere or they will quite simply not survive. This memoir contains many spiritual references and quotes from the Bible. This sometimes gets in the way of the narrative. Poss Taylor notes that it is a known fact close to 80 percent of parents of children with autism end up divorced. I have, in fact, read that close to 85 % of marriages end in divorce when one of the children is diagnosed with special needs. It is beyond difficult and unimaginable for most people, the path many have to travel to fight for their children. Poss Taylor is intriguing in that she has one child diagnosed with autism and one with FASD. She has a unique perspective then on the similarities and differences between both of these spectrum disorders. There are, in fact, numerous similarities between the two, but she notes: “It is not a secret how difficult raising a child with autism can be, but I will reiterate this right now – Grant is a breeze to raise compared to Ashley.” Initially I was concerned this book would simply be all positive inspirational anecdotes about life with Ashley, but in fact it is a balanced account of the rewards and challenges. Poss Taylor is not unlike most adoptive parents in that they are resourceful and often well educated, talented at advocating for their children. Ashley’s mother indicates she gained further insight into her daughter in the process of writing this book and I am not suprised by that. FASD, is a largely invisible neurological brain disorder. It is a physical deformity of the brain that is not seen when one looks at the child or adult in front of them. There are some common facial symptoms of alcohol-related brain damage, but only a small portion of people with FASD have that precise combination of facial abnormalities. This disorder often goes undiagnosed, unrecognized or misdiagnosed because it looks like so many other things. It is a bizarre life parenting and dwelling with someone on the spectrum. Learning how to manage a child with these special needs is experiential and demands flexibility. FASD is not linear or progressive, but somewhat cyclical and often unpredictable. A child may know how to print the number eight on Friday and then lose it by Monday and retrieve it again two weeks later. Their memory literally has big gaps and holes. There are good days and bad days, peaks and plateaus and in periods where our children are functioning well and knowing what to expect it is almost possible at times to forget they have a disability. Then out of left field comes a period of intense destructive behaviour or rage and it can leave the whole family reeling. Poss Taylor does a good job describing her daughter’s destructive behaviour and the lengths to which they have had to go to find things many others take for granted, like a school that supports her special needs. She also refers to the behaviours that impact the other siblings in the family. FASD is gaining more recognition slowly in North America, but it still lacks the level of commitment by researchers, educators and politicians that many other physical and mental disabilities have received.
 
Forfeiting All Sanity, by Jennifer Poss Taylor, Tate Publishing &Enterprises, USA, 2010, 130 pages, paperback, $10.99.
Thriftymommastips rating is $$$$ out of $$$$$. Educational, not overpriced.
Thriftymommedia is not compensated for reviews. Opinions are my own. I received a copy of this book free from the author.