FASD Archives -

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.

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.

Forgetful Frankie

27Nov | 2009

posted by Paula

First and foremost, a small disclaimer. Those of you who know me and read me know that I am a Mom of a little girl with FASD fetal alcohol spectrum disorder. So I may be the tiniest bit biased about this one but when I first saw hint of a book for children about FASD I was overjoyed. Anyone who parents a child with FASD struggles with what to tell them and when to tell them about their disability. This book is a way to help parents do that. So what follows here is my interview with Jill Bobula, author of this excellent new book, Forgetful Frankie, part of the WE Are Powerful series by Wildberry Productions, also available from Amazon.ca. The book retails for $16.95 and is written by sisters Jill and Katherine Bobula, illustrated by Rob Hall.

Thriftymommas Q:

1. How did the idea for the series come about?

Jill Bobula: “Our children’s series, WE ARE POWERFUL, came about because of a number of reasons. One of the main reasons was that my son was identified with Tourette Syndrome just shy of his 7th birthday. Before that, we didn’t have a clue what he had even though we had visited a number of health professionals including a neurologist, psychologist, psychiatrist, and the list goes on and on. Our son, Spencer, not only has Tourette Syndrome, he is also affected by obsessive compulsive disorder, anxiety, depression, ADHD and he has a sleeping disorder. I think the mere fact that he has so many conditions may have confused many people. The truth is that many children with Tourette Syndrome also suffer from co-morbidity disorders (ADHD and OCD the most common). In the end, through nutrition (vegetables, fruits, gluten-free, casein-free foods, fish, chicken, lamb), fish oil and supplements, we were able to control his behaviour (quite an extraordinary feat I must say). But through this experience, my sister Katherine and I realized there were very few resources available for children. And the stigma – the stigma attached to children’s mental and neurological conditions is unbelievable and heartbreaking. We want these children to know they’re not alone. There are parents who refuse to obtain treatment for their children because they don’t want to admit something is “odd” about their child’s behaviour. There are those parents who feel ashamed and do nothing. There are parents who feel it’s a big secret and don’t want to talk about “it”. It’s so very sad. 1 in 5 children in Canada and United States are affected by a mental and neurological condition. It’s time we created an environment of acceptance, tolerance and ofcourse, understanding. Not all educators are taught about these conditions, nor are they given the skill set to deal with affected children. We hope through our books to teach children, parents, educators, society in general, about these conditions and hopefully, create a paradigm shift in how we think and behave towards those who are affected.

Thriftymommas Q:

2. How many books you now have?
Jill: “We currently have 5 of 8 out on the market. Our 6th book, Anxious Annie, The World’s Greatest Thinker, Anxiety & Obsessive Compulsive Disorder is in production right now.”
Thriftymommas Q:

3. It’s both you and your sister who write together, correct?
Jill:”That is correct. We collaborate rather nicely for siblings. She’s my oldest sister so I have to listen to her otherwise I get in trouble… No, it’s not difficult at all. The good thing about being sisters is we can be honest with one another without fearing we’ll hurt the other’s feelings.”

Thriftymommas Q:

4. How did you find your illustrator?

Jill: “We could easily have had an illustrator who does his work on the computer – in other words, computer generated animation. But we wanted children to know that hand-drawn art was still something we valued (children are bombarded with computer-generated everything…). An old friend of ours, Rob Hall is an engineer with 3 kids and a very busy schedule. We knew Rob liked to draw and we asked him if he would be interested in drawing for our books. He jumped at the chance.
Thriftymommas Q

5. Why did you choose FASD?

Jill: “Katherine does a lot of consultative work and she has come across many families affected by FASD. I believe the prevalence is 1 in 100 children (same as Tourette Syndrome). FASD is also preventative. The more people know about the condition and its consequences, the less likely women might choose to drink during pregnancy.”

Thriftymommas Q

6. What do you hope children get from Forgetful Frankie?

Jill: “We think Frankie can teach affected children that they’re not alone. With this train of thought, we want children who do have FASD to feel as comfortable as possible with what they have and to know that they are worthy of love, support and respect like anyone else. Forgetful Frankie will be able to teach children about the condition so that when they’re at school, in their neighbourhoods or in the park, and they see someone behave a certain way, they may realize there’s a reason and not be so quick to judge other children. We want parents and educators to know there are ways of working and living with a child who has FASD. Generally, Frankie can help spread the word about FASD. Everyone needs to know what Fetal Alcohol Spectrum Disorder is and what it represents.”

Thriftymommas Q:

7. What is Wildberry Productions?

Jill: “Wildberry Productions is our company which sells the books. Our last name is Bobula which in Slovak means berry (raspberry, blueberry, strawberry, etc). I was the Wild one in the family hence the Wildberry Productions.”

Thriftymommas Q:

8. Is this book widely available elsewhere – Indigo. Amazon?

Jill: “These books are available on Amazon. Some books are available at Indigo. We also sell them at our website http://www.wildberryproductions.ca/

9. Thriftymommas Q:

What would you like everyone to know about FASD?
Jill: “It’s a neurological condition that affects children in a variety of ways; cognitive, physical and emotional impairment and/or delays. There are some very positive ways of working and living with children who have FASD. There are also co-morbidities associated with FASD which may complicate things a bit as well. Overall however, I think people need to understand that FASD is a condition which affects children. We, as parents, educators and the community at large have a responsibility to provide an environment that’s conducive to understanding, tolerance, acceptance, support and plenty of love.”

16. Any other comments or thoughts?

Jill:” We love doing what we do. If we can change the lives of children and make their days that much easier, it’s all worthwhile. I hear what the books have done for children and it makes me proud. I know what I lived with for 7 very long years. I don’t think anyone should have to go through that and hopefully, the books bring a ray of light to families everywhere.”
Thriftymomma:
Thanks very much.

Jill: “And thank you!”