Pubdate: October 11, 1998 Source: Ottawa Sun (Canada) Copyright: (c) 1998, Canoe Limited Partnership. Part-2: http://www.mapinc.org/drugnews/v98.n902.a01.html Author: Stephanie Rubec Note: This article is the first of series of articles running this week in the Ottawa Sun. WHEN MOMMY DRINKS - (Part 1 of 2) Doctors have long known that drinking during pregnancy puts the unborn child at risk. However, many expectant women continue to abuse alcohol, condemning their children to the pain of birth defects. This special series begins today with an examination of Fetal Alcohol Syndrome, the most common cause of birth defects in Canada, and yet perhaps the least understood. "Behold, thou shalt conceive, and bear a son; and now drink no wine or strong drink" -- Judges 13:7 Julien Post only has one-quarter of his brain, but speaks fluent Dutch and can name any tree or constellation you point to. This 17-year-old boy reads better than most and is a snap at learning new languages. But he can't tell time and shrinks away from even a simple hug. Julien's the victim of a mother who drank alcohol while he was in the womb. He's been diagnosed with Fetal Alcohol Syndrome, an affliction that is 100% incurable but 100% preventable. And it has left this young man no hope of living a normal life. Julien Post's favourite stuffed toys comfort this 17-year-old victim of Fetal Alcohol Syndrome as he lies in the yard of his Watson's Corners home. The shy teen speaks in a soft, emotionless voice, avoiding eye contact at all times, even with his own family. He doesn't know how to interact with people, has few social skills and always agrees with everyone. He seldom has an opinion of his own. "He only has a quarter of a brain, and what he doesn't have he can't work with," says his adoptive mother, Aliade Post. "What isn't there was killed by alcohol." For most of his life Julien has lived with Post and her husband Bert at their Watson's Corners home situated on 22 acres about 90 km southwest of Ottawa. Julien uses an extensive vocabulary, but keeps his sentences short. He often finds it difficult to come up with complex phrases during a conversation. His physical deformities are obvious. His head is smaller than normal, his face is elongated and his back has a slight hunch. Children born with full-blown FAS have serious growth defects and irreparable damage to their central nervous systems. They suffer from intellectual defects, including memory lapses, hyperactivity, underdeveloped motor skills and a lack of social judgment. With help from professionals and loving family members, FAS children can often learn to live with and sometimes overcome their shortcomings, but they can never fully develop intellectually or sociologically. Aliade Post first laid eyes on two-month-old Julien while she was operating a nursery in Aylmer, Que., caring for babies waiting for adoption. The couple had raised three of their own children and were approaching their mid-60s, but were captivated by the dark-haired little boy who refused to be consoled. "I was getting all the babies who were in trouble," remembers Post, who fostered children until they were adopted or moved to another foster home. The couple ran the nursery for nine years before deciding to move to Lanark County because Aylmer was becoming too urban for their liking. Unfortunately, they were told that Julien, then two and not yet adopted, would be moved to a group home for the mentally disabled. "Both my husband and I had nightmares about that place," Post says. "We just couldn't do it." At that point the Posts decided to make Julien a member of their family. Aliade Post says when she and her husband decided to adopt Julien, they knew there was something wrong with him, but couldn't put a finger on what. The toddler never made eye contact or smiled for anyone. He didn't like to be held, cried uncontrollably and had a poor appetite. "You picked him up but you didn't feel like you had him," explains Post, who was told nothing could be done to help the cranky child. "I thought that with a lot of love and a good home life he'll get better. But he doesn't." His birth mother's occasional visits did nothing to raise his spirits. She re-enters his life a few times a year bearing gifts, but that's about the extent of their relationship. "She's just a woman who brings him presents and he likes it," says Post. Julien is friendly but nervous around people he doesn't know. His smile radiates from under an uncertain gaze, reflecting his timid disposition. The worst thing for this teen to cope with is even the smallest surprise. Life for Julien is one long schedule, living each day according to a strict routine set up by his parents. When he gets home from school at 4 p.m., he heads straight to his room for his five stuffed animals, keeping Tigger and Bear tightly in his arms as his mother hands him a cup of cold chocolate milk. Grasping the cup's handle with fingers punctuated by large bony knuckles, Julien waits for dinner, after which he usually goes for a walk alone on his parents' large, wooded lot. Julien says he enjoys walking in the woods alone at night to gaze at the stars and the moon. He has an incredible knowledge of the stars and can name any tree he sees, but he can't count them. To put himself to sleep, Julien plays the same Rankin Family tape and snuggles up with his stuffed toys, holding a private conversation with them, incomprehensible except to him. In the early years Post was often told that all Julien needed was a slap and some tough love to calm him down, but she preferred a hug and soothing words. By the time the couple left Aylmer for Watson's Corners 15 years ago, they had legal guardianship of Julien, who was finally diagnosed with FAS by a Montreal doctor. He has enjoyed a life of safety and stability at his Lanark County home, where visitors and interruptions to his schedule are kept to a minimum. The majority of visitors are the Posts' family visiting from Holland. These visits and his few trips to Europe have given him a rich understanding of the language. "Julien speaks Dutch," says his beaming mother. He has been integrated into regular classes for his language courses and is currently in Grade 8. For all other classes he attends an adjoining special school. "He's extraordinary in languages," says Post. "He reads like a trooper. He can spell anything, but he doesn't always understand." Post says it's easier for her to deal with his learning disabilities than with his behaviour. She tries to accept her son's idiosyncrasies, but continues to find it difficult. Her main concern is that Julien cares little about family-oriented events. She tried forcing him to participate during the Christmas season by having him help trim the tree and buy presents, but it left him anxious and irritable. After a number of holidays filled with tears and frustration, Post quit trying. "I think that's a very important lesson we learned. You can't change him." She says it's been a struggle to help his teachers understand how his birth defects have affected him. He behaves differently than the other mentally challenged children in his class, and some teachers don't know how to handle this. It's only in the past three years that Post says Julien has been fortunate enough to have understanding teachers who apply innovative methods to keep him interested. At school he has made friends with classmates, but he never asks any of them home and doesn't go to their homes. Nor does he develop close relationships, although he gets along with everyone he meets. The only relationships the teen has trouble handling are with his six nieces and nephews. Julien's mother says he's afraid of them. Post worries what would happen to Julien if she and her husband couldn't care for him anymore, doubting he could ever live on his own. "He has the biggest problem," she says. "He can't say no. People will take advantage of him." Everyday situations can develop into crises for him because he can't deal with change. For example, when summer weather comes along Julien refuses to wear short-sleeved shirts. Likewise, he must be constantly reminded to change back into warm clothes when frost hits the air in the fall. He needs time to adjust to even minor changes in his routine and will resist as long as he can, regardless of how uncomfortable he gets. Julien is also easily influenced. Last winter a fellow student told him he shouldn't wear his jacket out to recess. He followed the advice and was found shivering in a corner a short time later by a teacher. Post says she would have given anything for a support group or help from knowledgeable parents during Julien's childhood and early teen years. Such support would have helped her deal with the stress of parenting a child with such special needs. "Lots of times I thought, 'Am I doing it right?' " says Post, who now works with other parents of FAS children to offer them the benefit of her experience. No one knows how many children have FAS in Canada, but the most commonly accepted estimate sets the rate at one per 500 births. This makes it the nation's most common cause of birth defects, surpassing Down's syndrome, which occurs once in 600 births. And although there are no statistics for the number of children with partial FAS, it's estimated there are about five to 10 times more babies born with partial FAS than with the full-blown syndrome. Children with partial FAS have the same mental problems, but don't exhibit any of the physical deformities. A vague understanding of what alcohol does to an unborn child has been known for centuries. The ancient Greeks had laws prohibiting women from drinking on their wedding nights because of the potential for harming their unborn children. But it's only in the past 30 years that the medical community has developed a deep understanding of the devastating effects of alcohol. Unfortunately, the average person remains relatively ignorant of the effects of drinking, particularly on the fetus. "Many (parents) have this glass wall. They don't understand the consequences," says Dr. Gideon Koren, a pharmacologist/toxicologist and director of the Motherisk Program at Toronto's Hospital for Sick Children. Motherisk is the only program in Ontario that helps FAS children and their parents learn to cope with everyday life. The 12-year-old program also counsels expectant mothers on the dire effects of drugs and alcohol. About half of all pregnancies are unplanned, and half of those pregnant women drink alcohol at least in the first trimester. This means the fetus will be exposed to alcohol during the crucial time when the brain and other vital organs are just starting to develop. But studies show it doesn't matter which trimester a mother drinks in - -- alcohol still poses a danger to the fetus because organs continue to develop throughout the nine months. The mother's destructive behaviour often continues after the child is born. If the baby is not adopted, the mother may begin breastfeeding with alcohol-laced milk. Julien's birth mother, Lynne Canadien, didn't have a chance to start breastfeeding because her son was taken from her soon after birth. So were the other three children she's given birth to in the past 20 years. Canadien's family said the middle-aged woman has been living in the fast lane ever since her father died when she was 16. She's moved around ever since, making her difficult to find. The latest phone number she provided Julien's adoptive parents has been disconnected, and her relatives say she's moved to the Toronto area. "When my brother-in-law died I took her in for a while and I had trouble with her," says her aunt Pierrette Canadien. Lynne was kicked out shortly after when she was caught having sex in the backyard, and family members have been trying to distance themselves from her ever since. "It's a tragedy,"says Pierrette. "It's a circle. She comes from abused parents." Pierrette and the rest of the family know of Canadien's four children and where they're all living, but they didn't know Julien has FAS or whether the other children have been affected by alcohol. "It hurts me to see kids like that. It's too bad." People from all levels of society drink, and FAS children are born into all socio-economic classes. But statistics show that FAS is much more prevalent among the poor and aboriginals. On Native reserves children are five times more likely to be born with FAS, and those numbers are even higher in isolated communities. Statistics from the Canadian Centre on Substance Abuse show Native youths are up to six times more likely to suffer alcohol-related problems. Kiki Pelletier cradles her baby in Manitoulin, a reserve renowned for its strong health support network. Tragically, it's the exception. "For aboriginals, by far, it's a much larger problem," said Koren. The Hospital for Sick Children has established an outreach program at Sioux Lookout in northwestern Ontario to reach remote Native communities. But most First Nations communities are left to their own resources to deal with the problem. All too often the problem is either ignored or swept under the carpet. The federal and provincial governments have left it up to each reserve to develop their own health care programs. But with the number of health problems Native communities face, including diabetes and AIDS, many reserves have little money left over. Residents of a few reserves are fortunate enough to have access to a great deal of support. On Manitoulin Island, for example, residents have the benefit of nearby urban centres and modern hospitals. Their own programs complement nearby off-reserve programs, and their lighter workload allows them time to turn their attention to FAS. Rosella Kinoshameg, Manitoulin Island's health unit nurse manager, has spent the past several years developing and applying programs she tailored specifically for Native communities. Her application of the medicine wheel and Native spirituality and beliefs were greeted with enthusiasm and are effective in helping prevent alcohol and drug abuse. But many other reserves, particularly remote ones like Attawapiskat on the western shore of James Bay, have access to few outside health care resources. Despite the fact alcohol has been banned since 1992 in this remote community of 1,500, alcoholism and FAS remain a serious problem. Father Rodrigue Vezina, Attawapiskat's Catholic priest for the past 25 years, has tried to help people deal with the community's many problems. Vezina counsels people who come to him for help in English, French, Ojibwa and Cree. He said the alcohol ban has greatly reduced the frequency of public drinking binges and the violence that often accompanied them, but he admits it hasn't been totally successful. "They can always find ways of getting (alcohol) through," said Vezina. "It's still a problem." * - Part 2 of this article, follows. - --- Checked-by: Rich O'Grady