Jenny was out on a limb. Stretching to reach the Frisbee caught in our backyard tree, she leaned too far and came crashing to the ground. This was not the 12-year-old's first fall.
Jenny was out on a limb. Stretching to reach the Frisbee caught in our backyard tree, she leaned too far and came crashing to the ground. This was not the 12-year-old's first fall. Over the past two years she's climbed that tree to chase caterpillars and retrieve other objects and she's fallen three times.
You'd think she learn. But my daughter has fetal alcohol spectrum disorder (FASD). She can't generalize from one tree fall to the next. Like other children with specific diagnoses of fetal alcohol effect (FAE) and alcohol-related neurodevelopment disorder (ARND), each experience for Jenny is new and different.
More Than Meets the Eye
According to Health Canada in 2001, one percent of children are diagnosed with FASD. Yet 82 percent of Canadian women of childbearing age drink alcohol and only half of pregnancies are planned. How is it that so few children have FASD?
From animal models it appears that it is only when a mother drinks alcohol on or around the twentieth day following conception that the baby develops the facial features the world is coming to recognize as FAS. Yet brain damage can occur with alcohol intake at any time during pregnancy, without the characteristic facial features that signal brain injury.
For more than 30 years, Dr. Ann Streissguth, a psychologist at the University of Washington Teratology Clinic, has been researching FASD. Her work has documented that those with FAS, who have both the facial features and the brain injury, are more successful in their lives than those diagnosed with FAE, who have brain injury, but lack the facial features. This is because people with FAS are more likely to be recognized, diagnosed, and receive adequate support.
Other reasons we see relatively few children diagnosed with FASD in Canada is that Health Canada has yet to announce national diagnostic standards and procedures. This means taking the same child to the nine different clinics across the country could potentially result in different diagnoses. With only nine FASD clinics for a population of 32 million Canadians, the wait list is often at least a year long. In comparison, Alaska with a population of 600,000 has 14 FASD clinics.
Yet early and accurate diagnosis sets the stage for a better life for family's, individual's, and the community.
Living with FASD
An FASD diagnosis helped our family pinpoint and understand our daughter's difficulty in consistently applying what she knows to day-to-day living events (remembering how it felt the last time she fell out of the tree). Her low adaptive living score means that, despite her normal intelligence, she can't consistently generalize and apply what she already knows to the rest of her life.
We have learned that structure and routine are paramount to Jenny's life at home. Keeping her room tidy minimizes distractions and increases her ability to complete normal routines. Each evening, we pick out her clothes together before going to bed. We also always have a fallback set ready for "stuck days," and try to live by the adage "try differently, not harder."
This principle is perhaps best illustrated by the experience of Jan Lutke, mother to 12 children with FASD diagnoses in Surrey, BC. Two years ago her then 16-year-old daughter came home from school and asked, "If I don't learn the way they teach, why don't they teach the way I learn?" We have to learn to adapt to their needs, as they may never be able to meet our expectations.
No doubt, as parents we will spend our lives interpreting the world to our daughter and her to the world, and we are better people for it. Jenny has taught us the value of simplicity and to be less judgmental, useful qualities in today's world.
When it comes to alcohol during pregnancy, less is better; none is best. But this does not mean that those with FASD are broken and need fixing. People with FASD are like the quintessential Buddhists: they live in the eternal present.