Stop a moment and feed your brain. Don't forget to leave a note before you go

Friday 56 and FASD Day

4Sep | 2010

posted by Paula

This is my second week trying out this cute blogger meme for book bloggers. Freda informed me that the meme is actually from http://www.storytimewithtonya.blogspot.com/ Sorry Tanya for last week’s mistake. My book is strangely nearby and I have read it multiple times as it is considered the bible for those of us who parent children with FASD Fetal Alcohol Spectrum Disorder. Damaged Angels by Bonnie Buxton, a well known Canadian journalist, is the story of what happened when they adopted a child they didn’t know had FASD. FASD is a physical disability caused by a biological mother’s prenatal alcohol consumption. This is a bittersweet and sad tale of the struggles they endured, physical, financial and emotional, and the sad life of Cleo, their child by adoption. As FASD awareness day is right around the corner I have been looking through this book again and as luck would have it I have a copy right here. None for nine is the motto. There is no safe amount of alcohol, no safe time and so safe type of alcohol to consume during pregnancy.

 So these are the rules:

* Grab the book nearest you. Right now.

* Turn to page 56.

* Find the fifth sentence.

* Post that sentence (plus one or two others if you like) along with these instructions on your blog or (if you do not have your own blog) in the comments section of this blog.

* Post a link along with your post back to this blog.

* Don’t dig for your favorite book, the coolest, the most intellectual. Use the CLOSEST.

Damaged Angels excerpt: (much of page 56 is a list of characteristics that Buxton noted referred to in the news in court stories – the obvious inference here is that many criminals sitting in jails today are sitting there as a direct result of their disability going undiagnosed. FASD is often undiagnosed because it is so difficult to get an accurate history of birth mother’s drinking patterns while pregnant.)
This is the list on 56:
slight build, receeding jaw, unresponsive, quiet, seeming lack of remorse, model prisoner, learning disabled, ADHD, unemployed, welfare recipient, violent rages, alcoholic, addict, school dropout, repeat offender, alcoholic parents or broken home, native background, adopted, foster child.
This is a paragraph I like: “We are all interconnected. Our lives profoundly influenced by small events that may have happened years ago, involving people we may never know. Back in April 1979, a woman addicted to alcohol, whom I have never met, became pregnant with her third child, continued to drink through her pregnancy _and whirled my life into an unending orbit of love, grief, despair, and hope.”
Damaged Angels is a great read and a beautiful memoir about this tragic, largely preventable disorder. Buy it and give it to someone you know who plans to get pregnant.

Filed Under: bloggers, books, brain, children, FASD, neurological disorders, prenatal, Toronto

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

7Jul | 2010

posted by Paula

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.

Filed Under: adoption, authors, brain, FASD, Fetal Alcohol Spectrum Disorder, neurological disorders, Texas

Still Alice

20Mar | 2010

posted by Paula

Still Alice by Lisa Genova is a lovely, bittersweet, insightful l look, at the devastating diagnosis of early onset Alzheimer’s Disease. Alice Howland, an accomplished Harvard professor, is barely 50 when she starts to realize her brain is beginnning to fail her. Forgetfulness is becoming an issue. She often is at a loss for words and occasionally becomes lost at work on the campus near the university where she teaches. She loses her place in a telephone conversation with her grown children often and simply isn’t as sharp as she once was. These small blips require further investigation and so she reluctantly and, with disbelief, consults her doctor. The diagnosis, while shocking, isn’t completely a surprise as Alice seems to know in her gut that something is wrong long before it is given a name. Early-onset Alzheimer’s. She keeps the diagnosis to herself for far too long, until she is no longer able. When she shares the devastating news with family, they react in their own ways, each one revealing different facets of the disease. To Alice’s oldest daughter it is particularly frightening as she becomes pregnant and worries the genes might be passed to her twins. Projecting into the future she also worries she may someday be a burden to her own children if she develops symptoms. Youngest child Lydia, the artistic actress, surprisingly rises to the challenge as caregiver of her mother. Their bond is strengthened by the mother’s vulnerability. Lydia chooses not to have the testing that would reveal her future health. Her brother Tom carries survivor guilt of sorts when it is revealed that he should not get Alzheimer’s. Her husband, John, a brilliant doctor, hides his feelings and refuses to believe his wife may someday be unable to remember his name. He is a secondary character at best in this story and he is sometimes unlikeable as the heartbroken husband struggling to decide if he can manage his feelings while unable, at times, to see the essence of Alice beneath the deterioration. John chooses work as a refuge from his homebound formerly vibrant wife. “If I am in lab, I don’t have to watch you sticking Post-it notes on all the cabinets and doors. I can’t just stay home and watch you get worse. It kills me.” can’t take it Alice. The impact on Alice’s family is dealt with nicely here in this novel, as each of Alice’s children struggle to decide if they will be tested for genetic markers that will tell them whether they may develop the same terrible disease. But it is Alice’s story that clearly dominates the novel and her character we feel for all throughout her sad journey. While this is a fictional story, Genova, who has a PHD in neuroscience from Harvard University, is an expert on the details of this disease, and I loved that I learned so much about the inner workings of the brain from this book. This book has all of the elements of a good story and has won a few accolades along the way including the 2008 Bronte prize and yet I felt the writing lacked sophistication and style. This is a great story and it is nicely written and I would recommend it to almost anyone, but the writing is simply good, not great.  

Still Alice, by Lisa Genova is published by Simon and Schuster, New York 2007
The Mass Market edition was $10.99 in Canada.
thriftymommastips rating $$$$ out of $$$$$.

Thriftymommastips did not receive any compensation for this review

Filed Under: Alzheimer's Disease, brain, fiction, geriatric, Lisa Genova, neurological disorders, novels, older people, publishing, SimonandSchuster, Still Alice, women, writers

Categories

         

About Paula


Keeper of the Sanity - Freelance journalist, social media consultant and community manager. I build buzz for you. #KelloggersNetwork. Twitter Party junkie. Published in magazines, newspapers, on TV, radio etc.

Archives

Copyright © 2025 | Decorated theme by The Pixelista & Setup by My 3 Little Kittens | Built on the Genesis Framework