“Many people don’t like to talk about Fetal Alcohol Syndrome Disorders ,” says Evike Goudreault, Coordinator of the Awash Miyupimaatisiiun Special Needs program within the Cree Health Board. “But a lot of Cree kids are failing because they have this invisible disability.” So to get people to overcome their reluctance to discuss Fetal Alcohol Syndrome Disorders (FASD), Goudreault and the CHB organized a three-day FASD Action Forum in Montreal this past January. The event united health care workers (including physicians, nurses, and community health representatives), social workers, educators, and representatives of other community support services to generate ideas around how to address the challenges posed by FASD.
The challenges are great. FASD is lifelong: one cannot grow out of it, nor can it be cured. And people with FASD face severe difficulties: in learning, in developing and carrying out plans, and in functioning effectively in communities. People with FASD are likelier to experience trouble with the law, as well as with their interpersonal relationships.
While there are no confirmed statistics on FASD prevalence in Canada, one oft-cited estimate put the rate at almost 1% of all children born. In Eeyou Istchee, the prevalence rates are thought to be substantially higher than the national average, and is a sign of other social issues. Indeed, FASD is “part of the same larger pattern of abuse of alcohol and drugs. It leads to ekaa chihkaawaateyihtaakuhch, which is the social chaos we all know happens when people are not acting with respect towards others,” points out Cree Health Board Chair Bella Petawabano in her introductory letter to the Forum.
FASD is an umbrella covering three specific diagnoses: Fetal Alcohol Syndrome (FAS), Partial FAS and Alcohol-Related Neurodevelopmental Disorder (ARND). While many children affected with FASD show stunted growth and may have distinct facial features, there are two primary criteria for identifying FASD: there must be some form of brain damage evident, and the mother must have consumed alcohol during pregnancy.
The solution, it seems, is clear: pregnant women should avoid alcohol, especially heavy binge drinking – the activity most clearly linked to FASD. In reality, though, a simple prohibition on alcohol consumption for mothers-to-be is not the cure. “We look at FASD from a holistic viewpoint,” says Melanie Fisher, coordinator of Awash Miyupimaatisiiun’s Maternal and Child Health Program. “Just telling women not to drink isn’t effective. But as a community we can provide resources.” Pregnant women need support, from the individual assistance of immediate family members and the father-to-be, to a range of community supports that can not only provide information about healthy pregnancies and but also host services to help women cope with the challenges they are facing. “While pregnant women and mothers always had a central responsibility for ensuring the health of the infant, they never did this alone,” says Petawabano, referring to Cree tradition. “Fathers also played a role in supporting their partners throughout pregnancies; historically a Cree father was encouraged to take responsibility for his wife’s well-being, while families sought to encourage and to provide a healthy environment. With the family’s and community’s involvement, the mother was assisted in carrying, and then caring for, a healthy infant.”
But how can the Cree communities recreate these traditional values for new generations? “The Forum gave us a chance to share with communities what we have learned, and then to work as teams to find better ways to support individuals, including at-risk mothers and children affected by FASD,” says Goudreault. To that end, the first day focused on making FASD more visible by sharing information about it. The most compelling stories were shared by a young woman with FASD and a mother whose children have FASD, each providing insights into what it is like to live with this disability. On subsequent days , workshops explored different strategies that educators, social workers, health care workers, and others can use to educate young people to avoid FASD and to support those individuals who are already affected by FASD, and groups from the nine Cree communities sketched plans for raising awareness about FASD prevention and support in their communities.
These sketches are already taking shape as short- and long-term FASD prevention and support plans, which range from introducing educational activities in elementary school to information-sharing collaborations with the Youth Council, radio broadcasts, and annual FASD Awareness campaigns. The initiatives mark important milestones in community engagements in the struggle to lower FASD rates in Eeyou Istchee, and to support those people already living with the condition. “FASD is a big problem, but it isn’t too late to intervene,” says Fisher. “Hopefully the Forum will have helped spread the conversation about FASD. We need to get people talking about it.”