The Story of Fetal Alcohol Syndrome
Wilson, Sylvia A., Martell, Rebecca, Women & Environments International Magazine
A Canadian First Nations' Response
Good acts done for the love of children become stories, which are good for the ears of people from other bands; they become coveted things, and are placed side by side with the stories of war achievements. (Assiniboine tradition)
Stories told by people share their "essential heart." Through sharing their stories and their intimate knowledge of Fetal Alcohol Syndrome (FAS), children and families become the "teachers" to communities and societies, providing guiding information that could lead the way in solving the deep, fundamental problems that create and are created by FAS. Children who are affected by FAS are of immense worth, for they have the greatest gift to give. Their silent message or their own life experience is a gift of knowledge that moves us from a superficial level of understanding of the effect of alcohol on the unborn child, to a deeper appreciation from which to develop solutions to the fundamental global issues of FAS.
The prospect of a healthy and happy life begins in the womb as the child develops in body, mind, and spirit. Science suggests alcohol is more damaging than once thought, even in low doses and FAS is a "silent epidemic" that does not discriminate against race, culture and class. In every 1000 babies born in Canada, up to three, and more in some Aboriginal communities, are affected by FAS. Many mothers are not aware of the consequences of alcohol consumption, as only a generation ago even most physicians did not understand it. "But when half of Canadian women drink and half of all pregnancies are unplanned, plenty of mothers are exposing their fetuses to alcohol, if only for the short time before discovering they are pregnant," wrote M. Philp in Canada's Globe and Mail Newspaper.
FAS is a birth defect syndrome that results in a life-long disability profoundly impacting development and affecting individuals families, and society. Children exposed to alcohol during intrauterine development often have a wide range of impairments and have life-long consequences. Adverse effects of prenatal alcohol exposure exist on a continuum from subtle deficits of daily life such as judgment, problem solving, memory and so forth, to complete FAS syndrome typically characterized by intellectual disabilities, facial anomalies and severe behavioral problems.
At an individual level, it takes great courage for a parent to have their child diagnosed, admit drinking during pregnancy, to accept the outcome and develop a life plan for a child affected by alcohol. Brave mothers have come forward, speaking for the first time about the difficulties they were having with their little ones, asking for support and assistance.
"Please, please, God. Do not take Daniel away from me yet. Let me raise him for you. Do not take him away just yet. He is only two months old. It's too soon. Please, please, God, give me another chance. I will change my life around. I will leave drugs and alcohol alone. Spare him and I will do anything. Don't take him," pleaded one Ontario Aboriginal mother.
The stories of children personify the condition, taking us beyond the impairment to empathy for the person. This young person described how hyperactivity feels:
"I used to like to take all the cushions off the couch. I would stack them up on the floor and then I would run circles around them all day. That's all I would do is just run, run, run. How many children do you know that are 2 or 3 years old that sweat? I was literally soaked with sweat."
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It also takes courage to raise a child born with FAS. In 1975, while training in Native addiction at the Nechi Institute on Alcohol & Drug Education, Rebecca studied alcoholism and drug addiction while exploring a spiritual model for recovery. What she did not learn at that time was the effect that maternal consumption of alcohol had on an unborn child. That same year, as a young foster parent, Rebecca was having difficulty with her foster son and commented:
"This brave sounding boy was the same one who had me up repeatedly in the night. I would sit beside him, one hand resting on his heart, the other stroking his hair to soothe nightmares. Too many times I would have to change his wet sheets and dispose of food squirreled away under his pillow before finding my way back to my own bed.
"I felt inadequate and poorly trained to support him and sought assistance from my caseworker. In her wisdom, she directed me to the Child Development Centre where Dr. Jane Silvius proceeded to change my life and that of my chosen son, when she began to teach me about Fetal Alcohol Syndrome. She helped me see that my foster child's behaviors were not a result of my failed parenting. I learned how to work with my foster son's strengths in order to maximize his abilities, including the childhood experiences captured in his stories."
"FAS is hard for even one person to deal with. For a people to face it collectively is admirable, given the stigma and denial we all share around difficult social issues," state Anderson & Wemigwans in Healing with a deep heart - Aboriginal Approaches to Fetal Alcohol Syndrome/Effects. FAS can be prevented, however behaviors are notoriously hard to change, as decisions to drink are not simply matters of rational choice but embedded in complex social contexts. The following is a model for health promotion and prevention in dealing with FAS by starting in the community.
Rebecca was giving a presentation on Native Addictions & Fetal Alcohol Syndrome at the Prince Rupert Friendship Centre where she met a member of the Haida community of Old Massett. This was a meeting of like minds with a purpose and passion to deal with the prevention of FAS and development of life designs for children and families living with FAS. A partnership grew from this meeting and came as a request to be involved in a community plan of action for children identified with special needs, including those children with FAS. After listening to the needs of the community, Rebecca proceeded to develop a consortium of members of the community and community development facilitators from outside the community who became a "virtual team" with the task to provide a workshop on the development of a "whole-community concept" in the intervention and prevention of FAS.
There has not been a monumental positive change in the drinking behaviour of populations and the incidence of FAS has in fact increased over the past two decades. This illustraes that prevention requires more than increased knowledge, persuasion, or health education. Initiatives need to be designed to enable communities to build and strengthen multisectoral partnerships and build community capacity to promote healthy lifestyles through integration of health messages as cultural values and accept the responsibility to improve the social conditions of people living with impairments such as FAS.
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Cultural sensitivity and community mobilization:
"Crisis changes people and turns ordinary people into wiser and more responsible ones" (Wilma P. Mankiller, Cherokee Chief, 1987). In order to be truly a part of a community and have your "gifts" embraced, a health promoter must be invited to join. By displaying the attributes valued by the culture, Dr. Silvius undoubtedly would gain respect in many communities and open the doors to design interventions using her specialized skills with children with FAS, their families, and communities. The first step therefore in community mobilization involves the establishment of interpersonal relationships that includes effective use of self, interpersonal rapport, and collaboration that characterizes the helping relationship.
The day of our arrival in Old Massett, our team had the opportunity to immediately experience Haida cultural foundations and began to build a relationship with the community through introduction to Elders, a meeting with Chief and Council, and home visits with the community representative. Whenever we are invited to come into a community, a team must be keenly aware that they come as visitors into someone else's home and are responsible to behave in a culturally respectful manner. Thus we took time when we first arrived to meet the Elders who are guardians of the culture, the Chief and Council who are the protectors and providers of the whole community, and the health practitioners and teachers who are the caretakers of programs that serve the needs of the people. We accepted gracious invitations into the homes of parents and grandparents, to share a cup of tea and let them know who we were and what our role was going to be in their community. In this moment we held ourselves up to the scrutiny of the community. The sharing of our personal and professional passion for the work we did, was a demonstration of our respect for the people with whom we were developing a working partnership.
Workshop materials were designed as a flexible tool consisting of a blueprint for problem solving and program planning that simply provided a starting point for dialogue and guided planning through community engagement. The intent was for three sectors of the community, health practitioners, teachers and families, to describe their unique cultural and collective context for social action. Early in the workshop, we honed our ability to "listen with our hearts" through the talking circle, a process that allows for the collective "humanness" and the virtue of listening without directing others. Listening fully and completely to a speaker is the symbol of kindness that embraces the concept of interaction of mind, body, and spirit without judgment of the positive and negative aspects within the person and among the collective. In this First Nation community the ancient cultural teachings of respect taught us the true meaning of time; as each person was granted all the time they needed to share their thoughts and feelings about how FAS had affected their lives. We learned that culture could not be separated from daily living or spirituality, and that the values and beliefs of a culture are embedded in rituals and ceremonies and are important community capacities that can make a difference where other actions have failed.
We entered Old Masett with the belief that we brought distinct concepts in community development and mobilization. "We left Haida Gwaii with the realization that Haidas teach a cultural form of community development that comes from their established sense of identity and self-worth," concluded Rebecca. The experience confirmed that the more genuine the expression, particularly regarding personal experiences and challenges, the more people can relate to your expression and the safer it makes them feel to express themselves. Many years later, our collaborative workshops have grown to include time for ritual and ceremony, dialogue about the foundations of the culture, open discussion about spirit within and the natural order of life, sharing thoughts for the day, and building a collective spirit of hope and movement toward change.
Let us put our minds together and see what life we can make for our Children. (Sitting Bull)
Anderson, K. (2002). Straight talk: Lessons in culture-based parenting from Maria Linklater. Aboriginal approaches to Fetal Alcohol Syndrome/Effects (pp. 42-47). Ontario: Ontario Federation of Indian Friendship Centres.
Anderson, D. & Wimigwans, J. (2002). Healing with a deep heart. Aboriginal approaches to Fetal Alcohol Syndrome/Effects, Ontario: Ontario Federation of Indian Friendship Centres.
Canadian Centre on Substance Abuse (2001). A synthesis of findings from recent Health Canada investigations concerning Fetal Alcohol Syndrome (FAS)-related issues. Ottawa: Health Canada.
Cutknife, A. (2002). Annette & Daniel's story. Aboriginal approaches to Fetal Alcohol Syndrome/Effects (pp. 34-37).Ontario: Ontario Federation of Indian Friendhsip Centres.
Ministry of Health (1997). It takes a community. Ottawa: Health Canada.
Martell, R. (2002). Teachers among us. Aboriginal approaches to Fetal Alcohol Syndrome/Effects (pp. 26-31).Ontario: Ontario Federation of Indian Friendship Centres.
Philp, M. (2003). Middle-class FAS: A silent epidemic? Globe and Mail, February 1, 2003 (print edition p. F6).
Raeburn, J. & Rootman, I. (1998). People-centred health promotion. Toronto: John Wiley & Sons.
Rebecca Martell and Sylvia Wilson came together as women with a genuine interest in the health and well-being of children and families. Rebecca brings her experience working in the field of Native Addictions. Sylvia brings passion for helping families and their children deal with impairments and disabilities, and has over thirty years experience working as a pediatric occupational therapist. Together, they share a respect for the individual, cultural sensitivity, and an eagerness to work alongside people in the quest to prevent FAS and promote healthy living for people with FAS.
Copyright WEED Foundation Fall 2003…
Questia, a part of Gale, Cengage Learning. www.questia.com
Publication information: Article title: The Story of Fetal Alcohol Syndrome. Contributors: Wilson, Sylvia A. - Author, Martell, Rebecca - Author. Magazine title: Women & Environments International Magazine. Issue: 60/61 Publication date: Fall 2003. Page number: 35. © WEED Foundation Fall 2008. Provided by ProQuest LLC. All Rights Reserved.
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