For James Robideau, combating the ill effects of fetal alcohol syndrome on another generation of Native American children is as much a question of cultural survival as it is a personal commitment.
At a recent seminar on the disorder, Mr. Robideau, a tribal lawyer for the Oglala Sioux who lives on South Dakota’s Pine Ridge Reservation, watched as participants began to realize how F.A.S. had become woven into the fabric of their lives.
“They talked about the children that they have raised before any of them had become aware of F.A.S.--we’ve only become really aware in the last two to three years--and they said, ‘Now, I understand. That’s my grandson,’” he said.
Mr. Robideau and his wife, Karen, who teaches at the nearby Oglala Lakota College, are intimately familiar with the effects of F.A.S., a preventable form of mental retardation linked to maternal drinking during pregnancy. The couple’s adopted child suffers from the malady, and they have opened a shelter in their home for other afflicted children.
But Mr. Robideau knows, too, that some experts on the Pine Ridge Reservation estimate that F.A.S. and a related, slightly less serious disorder called fetal alcohol effect are believed to afflict as many as 25 percent of the children born there.
And that means, he says, that scores of other youngsters on the reservation will enter school at a disadvantage and that, without intervention, the odds are good that the cycle of abuse and alcoholism among the Sioux will be perpetuated.
Mr. Robideau is not alone in his concerns. The recently released report of the U.S. Education Department’s Indian Nations At Risk Task Force quotes Reberta Ferron, a Sioux lawyer and the associate director of the affirmative-action office at the University of Washington, as saying that she is “convinced that we [must] ... halt [F.A.S.] ... Or we will cease to exist as Indians.”
In the face of such dire predictions, educators and others are beginning to respond.
The Robideaus, for example, recently organized a seminar for teachers as part of a reservation conference on F.A.S.
Not only do teachers need to be able to recognize the disorders, Mr. Robideau said, but they must also adapt their teaching styles and strategies to reach affected children, who are often disruptive and have problems paying attention.
“I have a daughter with F.A.S. ,” he said, ‘but I’m still learning.”
Experts say local efforts like the Robideaus’ reflect a growing national awareness in Native American communities about the severity of F.A.S. and the negative impact it can have on student achievement. Indeed, one expert has called such efforts “a bright spot” in the national drug- and alcohol-abuse prevention effort.
Still, observers note, most of the schools that serve Indian students still lack the expertise to identify the disorder or to plan appropriate strategies for teaching its victims.
Difficult To Identify
The earliest medical research indicating that drinking might affect unborn children was published in French medical journals in 1968, but it was not until 1973 that fetal alcohol syndrome was identified in a systematic way.
Currently, the March of Dimes lists F.A.S. as the leading known cause of retardation in the United States.
For a variety of reasons, however, the malady can be difficult to identify and often frustrating to cope with.
Many doctors, for example, are not trained to identify the symptoms of the disorder, and, indeed, until recently, many physicians subscribed to the prevailing belief of an earlier generation that moderate use of alcohol during pregnancy was harmless.
Also, the effects of prenatal drinking on children can vary widely, depending, among other factors, on the amount the mother drank during her pregnancy and when.
The bottom line, experts say, is that there currently is no way to predict how a given drinking pattern will affect the unborn.
In the face of such uncertainty, many doctors now counsel that, to be safe, women should avoid drinking during pregnancy altogether. Only recently have some researchers even begun to consider whether paternal drinking patterns might also contribute to the disorder.
Similarly, the severity of the malady varies greatly in its victims, with some children demonstrating marked physical and emotional symptoms, and others displaying few outward signs.
At its worst, F.A.S. can cause hyperactivity, developmental delays, attention deficits, and difficulty learning from past experiences.
Experts also say that F.A.S.-afflicted children often exhibit poor judgment or have trouble being able to distinguish between right or wrong or to recognize dangerous situations. The result, they say, is that such youngsters often exhibit such anti-social behaviors as stealing, lying, and cheating.
‘Problem Exists Everywhere’
While a growing body of research is documenting the physiological effects of the disorders, there is little data on the prevalence of F.A.S. and F.A.E., even among the relatively well-studied Native American population.
Some researchers, for example, take issue with the estimates of local exports about the severity of the problem on the Pine Ridge Reservation.
A generally accepted estimate is that F.A.S. affects approximately 1 in 750 children born in the United States. Many experts believe the prevalence of F.A.S. to be twice that of F.A.S.
While both F.A.S.. and F.A.E. are commonly characterized as “Indian problems,” doctors and researchers say there is a growing understanding that the incidence of the disorders among other racial and ethnic groups may easily rival, or even exceed, that in Indian populations.
“There just aren’t any really good epidemiology studies with other populations,” said Philip A. May, the director of the University of New Mexico’s Center on Alcoholism, Substance Abuse, and Addictions.
Michael Dorris, the author of The Broken Cord, a critically acclaimed, autobiographical account of his efforts to rear a child afflicted with F.A.S., said in an interview that the thousands of letters he has received since his book was published in 1989 indicate that “this problem exists everywhere .”
Federal research is currently under way to determine the prevalence of F.A.S. among non-Indian populations.
Long-term projects in Upstate New York, Atlanta, Alaska, and South Dakota are tracking low birthweight babies born with small head circumferences in an effort to determine the severity of the problem in the general population.
Through the studies, researchers hope to “find out how we can do a better job of finding children affected with F.A.s.,” said Jose F. Cordero, the assistant director for science with the division of birth defects and developmental disabilities of the federal Centers for Disease Control in Atlanta.
“The point is,” Dr. Cordero said, “that alcohol is an equal-opportunity drug.”
‘Breaking Down Defenses’
Nonetheless, the fact remains that much of what is known about F.A.S. in the United States has been learned through studies of Native Americans.
Mr. May, known for his pioneering work in establishing an F.A.S. diagnosis and prevention program among the Navajo in the late 1970’s, said his research indicates that the prevalence of F.A.S. among Indian populations varies from 1 in 749 births among the Navajo and Pueblo peoples of the Southwest to 1 in 97 among the Plains tribes.
Cultural differences among tribes also appear to be an important factor in the prevalence of the disorders, he pointed out.
He and his colleagues also note that, among most tribes, children with F.A.S. and F.A.E. tend to be born to a relatively small number of women--a fact that, paradoxically, often makes prevention more difficult because “they are extremely difficult individuals to reach.”
Observers say that, confronted with such findings, more and more Indians are realizing that they are in a position to take steps to halt the spread of the disorders.
"[Indian] people are emerging from a very passive mode,” said Sally Davis, the director of the Center for Indian Youth at the University of New Mexico in Albuquerque.
Now, added Ms. Davis, whose center uses a multi-disciplinary approach to helping tribes fight such problems as teenage pregnancy, alcohol abuse, and AIDS, “They’re saying, ‘O.K., now what do we do?’”
With the emergence of research about F.A.S, Mr. May said, Indian people are realizing that “unborn babies are getting something that they don’t deserve, and that tends to get people’s attention.” “It breaks down defenses,” he added. Others note, however, that with that realization also comes denial.
“It’s very painful for people to admit, once they realize that the damage is permanent, that they are responsible for it,” said Barbara Revey, a Lummi Indian from Washington State who helped the Lummi’s business council arrange an F.A.S. conference last spring.
The Broken Cord
Many exports agree that the Broken Cord is, to a great degree, responsible for the growing awareness of the problem among Indians.
In the book, Mr. Dorris, an anthropologist and writer who helped found the Native American studies program at Dartmouth University, chronicles the difficulties he encountered, as a young, single man, in adopting a Sioux child.
He also describes his grudging and gradual realization that the child, whom he refers to as “Adam,” would never develop normally and his subsequent search for the cause of his son’s disability.
In the epilogue, Mr. Dorris, who is of Anglo and Indian parentage, sounds the alarm and calls for action to combat the disorder.
"[F]etal alcohol syndrome is preventable--it need not happen ever again,” he writes. “The future of society, in this instance more than in most, is in our hands. We can’t claim ignorance any longer.”
The sad story had a tragic coda when Adam died in September, at the age of 23, of injuries suffered when he was hit by an automobile. Ms. Dorns said the accident was not connected to the young man’s affliction.
The issue is likely to garner renewed national attention when a movie based on the book airs early next month on ABC-TV.
The film, which the network describes as a “dramatized” version of Mr. Dorris’s work, is scheduled to be broadcast at 9 P.M., E.S.T., on Feb. 3. A special preview has also been scheduled for members of the Congress later this month.
Providing Structure
Mr. May, whose research is cited in The Broken Cord, also credits the book with helping educators recognize the negative impact that F.A.S. Can have on student achievement.
“The thing that’s impressed us in the last year or so is how many educators and foster parents have recognized the need for special techniques for educating and rehabilitating these kids,” he said. "[The children] have been identified to the point where they are turning up in special classes.”
Mr. May and others point to the ground-breaking techniques developed by Ann Streissguth, a researcher in the department of psychiatry and behavioral services at the University of Washington, to provide the rigid structure such children need to learn.
Ms. Streissguth, who helped compile a manual on F.A.S. and its effects on adolescents for the Indian Health Service, counsels that schools should provide a calm and quiet learning environment; stress consistency, brevity, and variety in lesson planning; and assign students short tasks with clear objectives.
Valborg Kvigne, the F.A.S. education coordinator at the University of South Dakota’s Interdisciplinary Center for Disabilities, said she stresses Ms. Streissguth’s emphasis on structure in talks to teachers at the Pine Ridge Reservation.
Ms. Kvigne said, for example, that she recommends posting lists of everyday activities on students’ desks because “they can’t be expected to remember what you told them yesterday.”
She also noted that, for reasons not yet completely understood, the children tend to respond better to computer-based learning.
“It takes a lot for the teacher to understand,” Mr. Robideau of the Oglala Sioux said. “But once they understand the characteristics, they can develop a teaching module to develop habits.”
Despite such advances, some observers argue that schools have done little so far to break the cycle of alcohol abuse by young people that can lead to F.A.S.
“Many public schools are really shutting this out,” Ms. Davis of the University of New Mexico said. “They’re saying that ‘this is not a school problem.’”
She and others noted that roughly 90 percent of Indian children attend public schools, not those run by the federal Bureau of Indian Affairs.
Ms. Revey of Washington State added that ignorance of the symptoms of F.A.S. or F.A.E. often leads to a misdiagnosis of behavioral problems.
“We talk about the [children with] F.A.S. as the tip of the iceberg, because those are the people that end up receiving the [remedial instruction],” she said.
“There are kids that have had maternal alcohol exposure who may look fine on the outside,” she added, “but they have behavior problems, and they don’t get the extra attention they need.”
Early identification is vital, said Cecilia Recusik, the executive director of the University of South Dakota’s Interdisciplinary Center for Disabilities.
“If an early diagnosis is made,” she said, “then educational planning can be done to fit instruction to that child.”
“The other thing that can be done,” she added, “is that the parents can be more involved in creating a home environment that is much more supportive of that child’s learning style.”
Mr. Dorris noted, however, that children afflicted with F.A.S often live with adoptive families, who may know nothing about their background, because their birth parents either have succumbed to alcoholism or been declared unfit.
Arizona Project
School by school and district by district, educators are taking steps to combat the problem.
In one of the most ambitious efforts, the Indian Oasis-Baboquivari Unified School District, a 1,200-student public-school system on the Tohono O’dham Indian Reservation in southwest Arizona, has launched a pilot project to develop teaching strategies for children with F.A.S.
Patricia A. Tanner, the district’s psychologist and its F.A.S. project director, said the district is using a grant from the Arizona Department of Education to set up a separate elementary classroom for children ages 7 to 10 with F.A.S. and F.A.E.
“The primary purpose was to develop teaching methods and teaching strategies that work with these children,” she said.
In order to qualify for the special classroom, the children had to meet special-education guidelines and have a history of maternal drinking. The district conducted the screening in consultation with a dysmorphologist, a doctor who specializes in diagnosing the physical symptoms of F.A.S.
By stressing structured activity, the project, which is in its second year, has had “dramatic effects” on the youngsters’ classroom behavior.
“I would say that the academic gains were modest, but we really have had quite a bit of success with the behavioral changes,” Ms. Tanner said. “I often hear [F.A.S.] is a lifelong disability, which it is, and that you can’t do anything about it, which I don’t think is true.”
Encouraged by the success of the first project, tribal leaders and the district are preparing a proposal to expand the program into four classrooms and to try to teach students how to apply what they learn in the classroom more generally in their lives.
Because of his mental impairment, Ms. Tanner said, an F.A.S. student might, for example, have trouble generalizing repeated warnings not to walk on highways as a prohibition not to walk in a residential street.
Science of Alcohol
In another initiative, the Colorado-based American Indian Science and Engineering Society, using a $900,000 grant from the National Science Foundation, is developing an F.A.S. prevention curriculum for young students.
Norbert S. Hill Jr., an Oneida Indian and the association’s executive director, has been a vocal advocate for F.A.S. prevention as a member Of the Indian Nations At Risk Task Force.
The project is an offshoot of an earlier effort, dubbed Teaching Science of Alcohol Curriculum for American Indians, that was designed to help teacher educators make students aware of the symptoms of F.A.S.
Cecilia Jacobs, the project’s coordinator, said the materials will be designed for students in grades 4-9 as a supplement to existing science curricula.
“What’s unique about this is that the science of alcohol is not available to people at this level,” she said. “We’re also incorporating American Indian stories into the unit so that the science information is grounded in American Indian culture.”
She said initial drafts of the curriculum are likely to be circulated for review early this year.
‘It Takes Patience’
A growing number of educators and others, meanwhile, are beginning to recognize that efforts to combat F.A.S. and F.A.E. must extend well beyond the schoolhouse door.
“It’s not just that F.A.S. is a problem; it’s related to a host of environmental and social factors that have to be dealt with as a whole and cannot be singled out,” Ms. Recusik of the University of South Dakota’s center for disabilities said.
Children with F.A.S. Often come from a family environment where alcohol abuse is considered normal, she noted.
She recalled that one family that sought assistance from the center had nine children afflicted with F.A.S. and that another had seven.
Since taking the job of superintendent Of B.i.A. schools on Arizona’s Tobono O’dham Reservation two years ago, George D. Scott said he has come to realize both the severity of the F.A.S. problem among Indian students and the inability of schools to deal with it in isolation.
“I’m not so sure that we’re going to make a major impact by just doing curriculum,” he said.
Randy Plume, the education director of the Oglala Sioux and the superintendent of schools on the Pine Ridge Reservation, said that an over-arching approach is needed to foster change.
“Our primary approach [to prevention] here on this reservation is through our public-health representatives,” he said. “But the schools are facing the task of educating these kids” so staff members need to be told how to recognize the symptoms.
To turn the tide, Mr. Robideau said, Indian people themselves must seek a return to traditional ways in which mothers revered the “sacredness” of their unborn children and in which families nurtured one another.
“It takes patience,” he said. “In our Lakota ways, we love our children, and our families really help each other out. I think it’s a method that our families need to use.”
