Teaching the tough ones: Special programs create hope for students with fetal alcohol disorder

CrossCurrents

by Astrid Van Den Broek

After four years of struggle with the public education system in Whitehorse, Yukon, Roberta Humberstone felt she was out of choices. So she pulled her nine-year-old daughter Plum out of school to home school her instead. Why the dramatic move? Plum has fetal alcohol syndrome (FAS), a condition her teachers didn’t seem to understand. “Plum wasn’t allowed to go on field trips because she was unmanageable,” says Humberstone.“Her teacher put her desk at the back of the classroom, all by herself. I don’t know how she was expected to learn that way.”

At home, Humberstone could provide a much-needed customized learning environment for her adopted daughter. “I’m slowly developing a way to teach her so it has enough impact on her so she remembers,” she says. “But it takes a lot of one-on-one.”

Stories such as Roberta and Plum’s are common in the FAS world. Many students with the disorder are labelled “bad” kids by educators who do not understand that they are reacting to an overwhelming environment. But experts say the system, rather than slotting these kids into the education system, needs to accommodate them. Increased understanding among school staff and more resources are what children with FAS need to succeed at school.

Although no Canadian statistics exist,Health Canada estimates that approximately 62,000 children have fetal alcohol spectrum disorder (FASD), a syndrome of brain damage caused by prenatal exposure to alcohol that affects cognitive, social and emotional functioning, as well as motor skills. While children with the more severe fetal alcohol syndrome (FAS) have distinguishing facial characteristics such as a thin upper lip and widely spaced eyes, others have very subtle or no physical signs, but still have brain impairment, which can significantly Since the physical evidence can be slight or non-existent, children may be misunderstood. “Because their behaviour becomes the overriding issue, many professionals, other kids and communities interpret it as willful misbehaviour,” says Paula Cook, a teacher with Lord Nelson Public School s FAS program in Winnipeg, Manitoba, which currently has nine students between ages eight and 13. “They’re ‘problem’ kids; but it’s their frustration, how they react to their environment.”

That’s the heart of the issue – these kids don’t fit into the current system’s learning environment. Despite the need, programs such as those at Lord Nelson are rare (See sidebar for another such program). Most students with FASD are still mixed in with mainstream classrooms, where teachers may not know what FASD is or how it affects learning and behaviour.

Complicating the situation further is the fact that 86 per cent of these students have an IQ in the normal range, according to a 1996 study by Dr. Ann Streissguth and colleagues at the University of Washington in Seattle. But while these children don’t qualify for services for developmental disabilities, they have difficulty using their intelligence.

“Kids with FASD have a skewed sensory integration system,” says Cook. “That’s something many educators don't realize – the implications of the flawed integration system on kids in a classroom that can be very busy.” Students can become easily overwhelmed by too much sensory stimulation. “Sometimes the visual clutter and the whole structure of a classroom is not conducive to these kids,” says Cook. “Telling them to pay attention is like telling Rick Hansen to get out of his wheelchair and run laps.”

Also at issue is the kind of skills being taught: should the emphasis be on developing academic skills or on much needed life skills? “Some children will not succeed at the academic level, so the idea is to keep them in school with their peers,” says Su Knorr, a family therapist with Rideauwood Addiction and Family Services in Ottawa, Ontario. Life skills for these students often means adding a real-world dimension to academics. Cook relies on what she calls the “LETs learn” approach – “L” is for life skills; “E” is for experience; “T” is for tactile. One recent example was a female student who was sent out every day with money and a list of items to buy for a school barbecue.

But while Cook is well versed in the issues involved in teaching children with FASD, many teachers in mainstream classrooms aren’t. Frustration lies with them, but sympathy does as well. “Teachers and classrooms are full of kids with many difficulties,” says Jan Lutke, a senior FAS consultant with Connections, a FASD training and consultation organization in Vancouver, British Columbia. Lutke points out that unlike a child in a wheelchair, where the disability is easy to recognize, FASD isn’t so easy to spot.

What then is the solution? “Teachers need more information that helps them understand the kids,” says Diane Malbin, a social worker with FASCETS, an organization that provides consultation and education around FASD in Portland, Oregon. In Ontario, Knorr is meeting some of the need by working as a consultant to schools, teaching “FAS 101” to staff so they can better meet the needs of students with FASD.

In the longer term, the academic system needs to work with parents to achieve systems change applying to the classrooms. Ultimately, that means adapting the environment, says Malbin. “Instead of having one standard teaching technique and one standard timeline, we begin to understand that people develop in different ways. Instead of starting with ‘Here’s what we’re going to do for the kids,’ it’s asking ‘Who are these kids and how do they learn?’”

Finding the answers may lead to more stories of hope like that of Bruce Ritchie and his 14-year-old son David, who has FAS. David recently graduated from an elementary school in Sarnia, Ontario. His father attributes much of his success to a supportive classroom environment. “David’s teachers have been carefully selected and trained,” says Ritchie. “Early diagnosis and intensive intervention have made a world of difference, as have parental advocacy and involvement in the school. David absolutely loves school.”

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