Promoting Positive Outcomes in Children with FASD and their Families
"An ounce of prevention is worth a pound of cure."
― Benjamin Franklin
Children and adults with FASD often encounter a world that is not well equipped to meet their unique strengths and challenges. People with FASD have brain-based disabilities. However, people often do not see these disabilities and misinterpret them as “willful,” “bad,” and “lazy” behavior. Inappropriate punishments are typically used and people with FASD are left feeling misunderstood, confused, and frustrated. People with FASD try to cope with these difficult feelings, but do not always know how to do so. Unfortunately, poor coping can lead to bigger problems, called secondary conditions. Secondary conditions include mental health problems, trouble with the law, school disruptions, and substance abuse.
Parents and other support people work hard to find services to meet the complex needs of children and adults with FASD. Unfortunately, people with FASD do not easily qualify for services offered in the schools and community. Providers have limited training in FASD and do not always know the best ways to help and support people with FASD. Few specialized services exist for people with FASD and their families, although researchers and clinicians are working hard to fix this.
Christie Petrenko, Ph.D., is a good example of a researcher and clinician who is working hard to fix this problem. Dr. Petrenko is a rising young researcher at the Mt. Hope Family Center, University of Rochester. She has developed an intervention program with the primary goal of preventing secondary conditions in children with FASD. Her program, called Families on Track, is for young children with FASD between the ages of 4 and 8 and their families. Families on Track builds on the success of the Families Moving Forward (FMF) program by adding a child-focused component and aftercare program. Just as in the original FMF program, parents collaborate with their FMF Specialist to learn new ways of thinking about their child, and positive behavioral support strategies to help manage their child’s behavior. FMF specialists also assist parents in advocating for their child in school and community settings. Children participate in a weekly social skills group using the Promoting Alternative THinking Strategies (PATHS) curriculum. PATHS teaches children how to understand emotions, regulate their feelings and behaviors, get along with others, solve problems, and develop positive self-esteem. In the aftercare program, specialists check in with families several times a year. Regular check-ins help parents adapt to new challenges.
Dr. Petrenko received a prestigious Career Development Award from the National Institutes of Alcohol Abuse and Alcoholism (NIAAA) to begin evaluating the Families on Track program. She will study whether Families on Track helps prevent secondary conditions as children get older. Providing children and families with important skills at early ages can promote positive outcomes and reduce the likelihood of secondary conditions. Prevention programs can be more effective and less expensive than treatment of existing problems. The evaluation of the Families on Track program will also provide important knowledge about the use of FMF in combination with other interventions.
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Where do I begin to tell this story? I honestly feel that I’ve been inspired and touched by each of the families affected with FASD with whom I’ve worked, and that each family has their own compelling story.