I write this section as an ABE teacher and parent of a young woman diagnosed with FASD at age 14 years. Since many aspects of parenting are like teaching, I hope that our family’s hard-earned learning and successful strategies will be transferable to your ABE classroom or workplace.
Note: My daughter, Angela,* has given verbal permission to tell her story.
My husband and I adopted Angela at age two from Santiago, Chile. We knew that she lived with her birth mother in poverty until age 16 months. She was then voluntarily relinquished and placed in a foster home until our adoption process was complete. We were told that she was slightly malnourished, small for her age, not walking, but otherwise, healthy and alert. We assumed that providing Angela with a balanced diet and “a stable, nurturing, and non-violent home” would completely overcome her early deprivation. We were wrong.
We did not know that she was likely exposed to alcohol in the womb. I say “likely” because we cannot verify maternal alcohol use. However, according to a comprehensive evaluation at the University of Minnesota FASD Clinic in 2001, Angela has the facial features, neurological damage and functional impairments characteristic of FASD. This prenatal brain damage was compounded by severe malnourishment and possible neglect. The medical director called it the “triple whammy.”
Angela’s diagnosis of FASD was transformative for our family. We began to understand that her persistent emotional, behavioral and learning problems were about can’t rather than won’t. As described in Understanding Fetal Alcohol Syndrome and Fetal Alcohol Effects, by Diane Malbin, “children exposed to alcohol in the womb suffer brain damage that alters the way they think, behave, and learn.” This understanding of her neurological brain damage caused shifts in our thinking and changes in our doing. We often referred to a chart in this same resource, “Is it that the child won’t? or Is it that the child can’t?” by Diane Malbin. See this chart at this link: http://www.come-over.to/FAS/cantwont.htm
Because FASD is a spectrum disorder, there is “no one size fits all” treatment plan. The following strategies describe what has worked for Angela and what might work for your students or employees with FASD.
- We expanded our “circle of support.” Since becoming an adult, Angela has been eligible for county support services under the Developmental Disability program. She has a social worker, independent living skills provider, vocational counselor, and Medical Assistance benefits. If your FASD student or employee is without support services, refer them to the county for an eligibility screening and/or assessment.
- We strive to remember the discrepancy between Angela’s chronological age and developmental age (see the chart under Secondary Disabilities). Even though she is 23 years old, she has a much less developed level of maturity, social and living skills, independence and understanding of adult life. Remember that your FASD student or employee sometimes, but not always, thinks and acts much younger than you would expect from an adult.
- We help Angela structure a daily and weekly routine. This has been crucial for her physical, mental, and emotional well-being (and mine). We help her organize a calendar listing her activities, work hours, appointments, and social and family events. Set up a regular and predictable schedule of attendance, assignments, or work responsibilities for your FASD student or employee.Provide a brief check-in each day and modify in writing any changes to their routine.
- When Angela gets stressed or frustrated, she seems angry and often shuts down. When we first observe this behavior, we try to model a problem-solving process. We ask: “What is the problem? What can you do? What can we do? What will you do and when?” Give your FASD student or employee the chance to express their distress and work together to generate solutions. Their negative behavior is more about the situation and their lack of skills in dealing with it – not you.
- From very early on, we observed that Angela was easily overwhelmed by color, lights, sound, touch and social situations. We try to respect her need for a lot of quiet and alone time – much more than we need! Be aware that hypersensitivity is “almost universal” (CFL, 2000, page 13) for persons with FASD. Do allow them to sit where they are comfortable working; however, don’t allow them to isolate themselves from you or other students.
- Angela processes slowly, gets confused easily and does not transfer her learned knowledge to new situations. We have learned to limit our talk, be willing to repeat and be patient with her pace of learning. When teaching your FASD student or directing your FASD employee, keep your verbal directions concrete and short. If the task is complex, break it down into steps, give one direction at a time, and demonstrate how you do it. Or ask a sympathetic co-worker to be their coach.
- Angela often has trouble with oral expression and communication. It takes her longer to express or explain what she means – especially to people she does not know. Impatience or correction brings on immediate distress and a possible shut-down. Give your FASD student or employee the gifts of time and patience. This approach will build their trust in you and increase their willingness to communicate and express themselves to you.
- Angela had difficulty passing the Basic Skills Reading and Math Tests required for high school graduation. Although an avid reader and writer, she struggled with comprehension of expository text. We hired a summer tutor who taught her specific strategies like SQRRR (survey, question, read, recite, review) and a math problem solving process (read the problem, look for key terms that will help you decide the operation, calculate, check for reasonableness, compare to multiple choice answers). Explicitly teach (explain, model, and provide ample guided practice activities) concrete strategies with your FASD student or employee. The more you tell or show them, the better the outcome.
Thank you for taking time to read this chapter on FASD and review the strategies that have worked for our family. Prenatal alcohol exposure strikes a cruel blow throughout the lifespan; from infancy to childhood and throughout adulthood. All persons with FASD need as many people as possible working within their “circle of support.” Now you can be one of them.
*The name of the young woman has been changed to protect her privacy.