A child climbs a tree and tumbles four metres to the ground. For a typical kid, the impact upon hitting the ground would be enough to teach them not to attempt the climb again. But for a child with adaptive functioning issues, one of the hallmarks of fetal alcohol spectrum disorder, learning from mistakes is easier said than done.
“If you project that over a lifetime, the inability to remember and apply – although you can get along in day-to-day life, people have an expectation of you which is difficult to meet,” says David Gerry, manager of FASD services at Beacon Community Services.
FASD is the term used to describe a range of disorders resulting from alcohol use during pregnancy, including issues related to vision and hearing, brain development, speech, growth and heart and bone formation. Since it is a spectrum disorder, people with FASD can experience a range of cognitive challenges, including impulsivity, distractibility and difficulty with abstract thinking. There’s no benchmark to measure just how much prenatal alcohol consumption causes what degree of damage. No amount is safe.
On Vancouver Island, it’s estimated that one baby is born each week with prenatal exposure to alcohol.
“It’s so big that it’s almost invisible. People don’t see it because it’s omni-present.”
Gerry, founder of the first pediatric assessment clinic with the Vancouver Island Health Authority and the University of Victoria, continues frontline work as a “key worker.”
Key workers visit schools and develop individual learning plans for children with the disability. A portion of Gerry’s time is also spent as an educator, leading workshops for teachers, police officers or any group that might benefit from a better understanding of how the mind of someone with FASD works.
Gerry committed to the career direction when he and his wife, a social worker, were fostering two children with FASD and realized it was faster to create services than it was to wait for them.
Though his work is fraught with challenges, Gerry says successes are possible in families and schools where children with FASD are allowed to work within their abilities and aren’t compared to their developmentally typical counterparts.
“If you change your expectations, it lowers the frustration of the child, the teachers and everybody around them,” he says.
But before Gerry or any other key worker can form an individualized learning plan and equip kids and their networks with practical learning tools, the first hurdle is often assessment and diagnosis.
For families in Greater Victoria, that likely means a visit to the Queen Alexandra Foundation for Children in Saanich, where an occupational therapist, speech language pathologist, psychologist, social worker and developmental pediatrician are able to make diagnoses.
Families receiving a diagnosis are not only coping with the stress of raising a child with behavioural issues, but often guilt associated with the diagnosis.
“If you are a family member or the parent, there’s often grief and loss if you have consumed alcohol or someone in your family has, and that’s going to have an impact on the rest of their lives,” says Heather Fox, intake co-ordinator for the network that handles the FASD assessment service on Vancouver Island.
After a child has been diagnosed, his or her treatment may include an infant development program, early intervention programs as well as access to key worker services. Like any medical condition, early diagnosis of the complex disorder yields the best prognosis says Dr. Jonathan Down, developmental pediatrician on the Queen Alexandra team.
“It touches a whole range of systems, not just the health care system,” Down said. “It’s unique in that respect. It’s also unique in that it’s theoretically preventable. … The reality is that the majority of pregnancies are unplanned and alcohol is used fairly pervasively by most people.”
While early intervention is the goal for FASD service providers, adult diagnosis remains a reality for some.
At Beacon Community Services, FASD programs are funded by the Ministry of Children and Families.
And while few programs are in place for adults with the disorder, Gerry has just finished a two-year study of 20 women diagnosed in adulthood.
The pivotal question for him is whether it’s useful as an adult to learn of something irreversible that happened in the womb.
“The initial reaction (from the newly diagnosed women) tends to be one of euphoria, like ‘Oh, thank you, at least I know I’m not a horrible person. Something happened to me over which I had no control’ – then the realization at some point thereafter that (the condition) is going to be life-long.”
Facts on pregnancy and alcohol
• There is no safe amount of alcohol that can be consumed during any stage in a pregnancy.
• 76 per cent of women over the age of 15 in Canada consume alcohol.
• American research shows that about 52 per cent of pregnancies are unplanned, so many women do not realize they are pregnant until they miss their first period.
• Despite ongoing public education campaigns, rates of alcohol consumption by pregnant woman have not changed since 1991.
• Among recreational drugs, (including cocaine, heroin and marijuana) alcohol can produce the most serious neurobehavioral outcomes in a baby.
• Although there is reference to the effect of alcohol on babies in ancient Egyptian and Greek writing, the term FAS was first coined by two University of Washington researchers in 1973.
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