Jodee Kulp, adoptive parent of a teen-ager with Fetal Alcohol Spectrum Disorder (FASD)and foster mother of others, is the author of Our FAScinating Journey, subtitled The Best We Can Be: Keys to Brain Potential Along the Path of Prenatal Brain Injury. This 300-page guide is both a memoir of the Kulp family’s experiences and efforts to help their daughter and an incredibly varied compilation of information and resources.
The book begins with an introduction to the Kulp family, how they adopted Liz, a failure-to-thrive infant, and fostered Dave, diagnosed with Fetal Alcohol Syndrome and Reactive Attachment Disorder, in his infancy and again at age eight. Kulp also homeschooled Liz and Dave for several years.
Both children had problems with rages, transitions, and learning. Kulp began to suspect that Liz also had alcohol-related brain damage, although she did not have the facial characteristics of FAS as Dave had.
Like many adoptive parents, Kulp received a diagnosis years later of Fetal Alcohol Effect. Since the neurological effects of this can be quite as disabling as the full Syndrome even for those who don’t have the Syndrome’s facial appearance, experts now refer to prenatal alcohol damage as Fetal Alcohol Spectrum Disorder or Alcohol-Related Neurodevelopmental Disorder (ARND)in order to avoid the perception that FAE is less severe than FAS. Liz was twelve years old, and her parents were beginning to think they faced placing her in a residential facility.
The family used diverse resources to help Liz with tactile defensiveness, visual-motor problems, auditory processing, and sensory integration issues. Neurodevelopment was a big part of the program they designed with the help of experts in many disciplines. They discovered that their twelve-year-old daughter had never rolled over or learned to breathe through her nose, and that their daughter had avoided coloring in school because of the roughness of the paper. They went back to very basic physical skills and sensory experiences, finding ways to make them fun, and built up from there.
The Kulps used nutrition therapy, auditory and vision therapy, biofeedback, computer programs, and creative tutoring ideas including rhythm and music. They found card games designed to teach emotional and social skills. They share these resources in their book and its appendices.
The Kulps caution that every child is different, and every alcohol-damaged brain may be damaged in different areas. A basic but thorough overview if brain regions and functions is included in the book.
Kulp also talks about her faith as well as her and her husband’s struggle to help Liz find appropriate friendships and keep her safe. Kulp even includes “out-of-the-box” ideas that worked for her family, such as giving an angry child a popsicle to suck on vigorously. She even shares her family’s gluten-free pizza and pie crust recipes.
Kulp does not sugarcoat the reality of life with a child suffering from FASD. She recounts several of their family’s more harrowing and discouraging moments. For example, teenage Liz called to her mother that the stove was on fire. Her mother told her to turn it off. Liz replied that she couldn’t turn it off because she hadn’t turned it on. The stove had accidentally been turned on when someone bumped against the dial, but Kulp could not make her daughter see that it could be turned off—in her daughter’s mind it was impossible to turn off something she had not consciously turned on. Kulp shares her fear that something so simple might prevent her daughter from living alone as an adult, although she believes Liz will eventually have either an independent or semi-independent living situation.
I enjoyed browsing the book then going back to read the more scientific parts. Kulp includes sidebars on each page with anecdotes from her family life that illustrate issues with each area. Appendices list resources, as well as outlines of the program the family designed for Liz. This book should be of immense help to adoptive parents since it contains not only the symptoms and explanation of alcohol-caused brain injuries but so many practical suggestions for living with affected children.
Please see these related blogs:
What is Fetal Alcohol Syndrome?
Alcohol-Related Neurodevelopmental Disorder
The Symptoms of Reactive Attachment Disorder