Bootleg Brothers

The CDC prevalence studies on fetal alcohol spectrum disorders indicate that Fetal Alcohol Syndrome (FAS) rates “range from 0.2 to 1.5 per 1,000 live births in different areas of the United States. Other prenatal alcohol-related conditions, such as alcohol-related neurodevelopmental disorder (ARND) and alcohol-related birth defects (ARBD), are believed to occur approximately three times as often as FAS.” This means that in some communities 6 out of every 1000 (or 1 in 166) children are born affected by prenatal exposure to alcohol. Some people believe this is a conservative estimate. The National Organization on Fetal Alcohol Syndrome describes the prevalence of Fetal Alcohol Spectrum Disrorder (FASD)  as 1 in 100 births. On Sunday morning there are about 200-300 people in our congregation. This Sunday, I counted three people who I suspect have disabilities related to FASD. Two of them have an official diagnosis. The third has some, but not all, of the facial features typically seen in FASD. He has obvious developmental problems. His mother attends our church. She has given her testimony in a public service and shared that she was an alcoholic. She has been sober for 12-years. Her son is in his 20’s.

In the case of FASD, common doesn’t translate into visible. People affected prenatally by alcohol have invisible disabilities. They look normal; the facial anomolies seen in FASD are extremely subtle. The expectation becomes that they should respond and behave normally too. But, invisibility moves beyond an unrecognized disability in a person. FASD is invisible in our culture too. People with FASD are not featured in movies, books or music. I didn’t learn about FASD when I went to nursing school 25 years ago. It wasn’t a part of the curriculum when I taught nursing school 5 years ago. When I talked to Marissa’s special education resource person about the lack of services for people with FASD, she assured me that Marissa was the only child in district carrying the diagnosis. Our district serves 4000 students. Given the prevalence rates, there are 24-40 students in our district whose FASD is unrecognized.

The Whitest Wall: Book One Bootleg Brothers Trilogy by Jodee Kulp is a novel. This book was included in the book bundle I received as a gift from the author. The book opens with the murder of a respected citizen in Small Town, Minnesota — the book is a mystery. As the story progresses the lives of the citizens of the town are described. The book focuses on motivations, culture, prejudice and the importance of community. The members of the community affected by FASD are identified and for the most part understood, even by the youngest community members — it is a fantasy.

FASD children can become the forgotten kids – the children that have nearly invisible disabilities. They have their arms and legs, can see and hear, run, play, etc., but most have never been to a birthday party or a sleep-over. They are last to be chosen to play, and first to be blamed. Their illnesses aren’t fatal, but a small part of their hearts and souls die with every rejection. Their behaviors may seem odd or unpredictable to themselves as much as to society. ~ Barriers to Those with Invisible Disabilities

Because I am parenting a child young adult affected by FASD, I have read a lot about FASD. I don’t kid myself, I suspect most Americans won’t read professional journals to try to understand FASD. This book will educate the readers about FASD without their even knowing that they are learning. And, this is the power of the book. Because as a parent watching from the sidelines, it isn’t always the brain dysfunction that causes the most pain and difficulty, it is being rejected and misunderstood. Perhaps education through a novel will translate this fantasy into the norm, a new reality for those affected by prenatal exposure to alcohol.

The title of the series is eerily descriptive. At the end of the book, there were discussion questions for reader groups. The last question, “What is the definition of Bootleg?” The first thing that comes to mind is the making, selling and transporting (hidden in the legging of the boot) of alcohol during prohibition. But, I also thought about the unregulated distribution of music. My mind wandered from the unregulated sale of music to the unregulated sale of alcohol to the unregulated behaviors my daughter sometimes displays. She is not controlled by rule, law or cultural expectations. When I look at other people I have met that are affected, they are eerily the same. They seem to have a cultural norm all their own — they are from the same tribe. When I attended FAS Camp with Marissa, I sensed their brotherhood. Marissa told me on the way home that she “felt normal.”

This book has received the Mom’s Choice Award for Young Adult Fiction and Adult Fiction. This book is also a finalist for Book of the Year, Multicultural Fiction.