Pubdate: Monday, 12 October 1998 Source: Ottawa Sun (Canada) Contact: (c) 1998, Canoe Limited Partnership. Author: Stephanie Rubec Editor's Note: This is part 1 of 2 parts, of an article that is 2nd in a series of articles running this week. The 'Source' for this series was erroneously attributed to the "Edmonton Sun." The credit should be to the "Ottawa Sun." We apologize for any confusion & trouble this may have caused. TINY VICTIMS - (Part 1 of 2) No escape for alcohol's... Doctors have long known that drinking during pregnancy puts unborn children at risk. However, many expectant women continue to abuse alcohol, condemning their children to the pain of birth defects. This special series continues with a five-page look at the struggles of those children born with Fetal Alcohol Syndrome. Sara Collins looks like your average teenager, but she says her mind is "confusing and dark" at times. "It's like a gate and it's got vines all around it," says the pretty 19-year-old. Sara diligently applies her makeup every morning, meticulously chooses her clothes and makes sure her look is perfect before stepping outside her Sault Ste. Marie home. Her curly blonde hair, clear blue-grey eyes and shy but radiant smile paint the portrait of a well-adjusted young woman. But Sara has had a rough life. She grew up not understanding why she was different. In school she couldn't grasp simple math concepts no matter how hard she tried. It wasn't until many years later, when she discovered she had Fetal Alcohol Syndrome, that she began to make some sense out of her frustrating past. "I didn't have a lot of friends in school," Sara says, avoiding eye contact and fidgeting with a tablecloth. "It made it a lot more difficult." She would explode in a tantrum whenever she didn't get her way. She didn't know how to voice her frustrations any other way. She still doesn't. The anger built as she began smoking and ran out of money to buy cigarettes. She thought she could force her adoptive parents to buy some more by screaming at them. "To communicate with people is the most difficult thing I had to do," Sara says, admitting that she still has to work on properly expressing her feelings. Like many people suffering from the effects of alcohol before birth, Sara had become a chronic runaway midway through her teens. She ran away from her first job placement at 16, disappearing for 48 hours before police tracked her down. After two sleepless nights, Sara's mother, Theone, got a call from police saying they found her daughter in a seedy apartment in a rundown part of town. Ignoring the police officer's suggestion that she not go to see her daughter at night, Theone marched right into the apartment and took Sara home. Since her 18th birthday, Sara has run away three times. She can't remember why, but claims things have since changed for the better. "I've learned that it's not a solution," she says, glancing at her mother. "You can't deal with life that way." To find a reason for her daughter's behaviour, Theone took her to a series of doctors throughout her early childhood and teenage years. Sara was tentatively diagnosed as a sociopath suffering from Attention Deficit Disorder. Her mother was told to send her back to foster care if she couldn't handle her. Theone began digging into the background of Sara's birth mother and found she drank during pregnancy. Finally she had found the reason for her daughter's uncontrollable behaviour. Doctors told Sara she had partial Fetal Alcohol Syndrome. She didn't have the visible characteristics of a full-blown case, but her behavioural problems were unmistakable. Despite the diagnosis, help remains difficult to obtain because outwardly she looks like any other teenager. It isn't known how much a pregnant woman has to drink to harm her unborn child. But alcoholics and people who binge-drink or consume alcohol on a daily basis while pregnant run a much higher risk of causing permanent brain damage and a life of heartache for their children. Children born with full-blown FAS have growth defects and damage to their central nervous systems. They never outgrow their intellectual defects, including memory and behavioural problems, lack of social judgment, hyperactivity and underdeveloped motor skills. Few services are available to target the cluster of physical and mental problems at the same time, so FAS children are forced to consult different doctors for each of their symptoms. Sara says her family's support and love have kept her afloat. "Just all the love you get (helps)," she says. "It's amazing what love can do." Sara will be one of the few people with partial FAS to enter college -- perhaps the only one in Canada. She thanks her tutors and her parents' help. "If they weren't so supportive there's no way I would be where I am now. I remember how I was before." She began taking a hairdressing course this fall, despite the fact most medical journals say a child born with FAS is a born dependant. Sara has her future planned. She wants to open a beauty salon for seniors, and then move out of her parents' home to live on her own. Every so often she decides she doesn't have FAS anymore and wants to move into her own place, but she continues to live under her parents' watchful eyes. At first Sara says she was angry at her mother's restrictions, but now understands her mother is only trying to help. "It has to be there because I have to live a structured life. But it does get on my nerves sometimes." Her family has hired a youth worker who follows Sara to all her social outings. Because she doesn't know how to say no and wants to be liked by everyone, the youth workers have often been called upon to get her out of sticky situations. For example, once a young man began throwing lighted cigarettes at Sara's face to see if she would tell him to stop. The youth worker is also teaching Sara life skills because, although she's graduated from high school, she still doesn't know how to handle money. She has made progress on many things she once thought impossible to learn, proudly announcing she can take the city bus on her own and tell time. But almost every time she does an activity alone, something happens. She often has run-ins with strange men who follow her around because she doesn't know how to tell them to leave her alone. She thinks they simply want to be her friends. A recent solitary bus ride led to her search for her birth mother when she noticed a Native woman pushing a baby carriage down the street and thought they might be related. Every day is still a struggle for Sara. She's always trying to learn how to use her damaged brain to the best of its ability. But her mind often plays tricks on her. About 10% of mentally handicapped children are diagnosed with full-blown FAS, but an unknown number of Canadian children suffer partial FAS. It's the most common cause of birth defects in Canada. Part of the tragedy is that it's completely preventable. Few statistics are available, but most researchers agree one child out of 500 in Canada is born with FAS, while five to 10 times as many babies are born with the partial syndrome. Almost all children diagnosed with full or partial FAS are living in adoptive families. Children adopted more than a decade ago with FAS were labelled mildly retarded and parents were told that a little love could solve all their problems. Today there is more openness and knowledge about the syndrome during the adoption process. Organizations like the Adoption Council of Canada pride themselves on making adoptions more transparent, fully informing parents on how their adopted child will develop. The vast majority of children adopted have either birth defects or problems related to abuse, says Elspeth Ross, a board member with the Adoption Council. "Children who are placed for adoption go there for a reason," Ross says, adding that children taken into foster homes often come from bad situations as well. "The majority of these babies are not placed as healthy infants." Ross says this new openness has been positive for the adoption process, but has created a backlash where potential parents are frightened away. "You have parents afraid of adopting them because they think it will be too difficult," explains Ross, adding that it's far from impossible to raise an FAS child. Until a decade ago Ross would have understood the reluctance to adopt an FAS or special-needs child. But today's parents have a larger web of support groups and agencies to help them deal with the many problems that will arise. An interactive support network is also in full growth on the Internet with Ross, the adoptive parent of two boys with partial FAS, understands all too well the frustrations felt by parents who must shuttle their children between doctors looking for a diagnosis. "Some of us are managing quite well raising these children," says Ross, who hasn't been able to get a definite diagnosis for her two children. When an alcohol-related birth defect is mentioned as a possibility, parents have to dig into their child's history themselves to find the birth mother and verify whether she drank while pregnant. If alcohol consumption is confirmed the door opens for a doctor to issue a firm diagnosis of FAS or partial FAS, which allows the child to get the help he or she desperately needs. Dr. Gideon Koren, pharmacologist/toxicologist and founder of the Motherisk Program at the Hospital for Sick Children in Toronto, believes an early diagnosis will help an FAS child develop to the fullest potential. "If you get intervention early enough you can build on it," says Koren, who prefers to focus on what FAS children can do rather than what they can't do. Koren's prevention and detection program is one of only a handful of its kind in Canada and the only one in Ontario. Research has been ongoing since FAS was first mentioned in North American medical journals in 1973, but Koren says there's still much to be done. He criticizes alcohol distillers and the federal and provincial governments for refusing to provide enough money for proper research. "We used to say they've got Down syndrome," says Koren, adding that many parents and doctors are still ignorant of the characteristics of FAS. Koren believes the earlier a child is diagnosed with FAS, the better the chances he or she will grow into a productive adult. He said it's important a diagnosis be made before the age of six. Otherwise, the child will probably suffer from isolation in the classroom and the teacher will become frustrated trying to understand why the student is constantly misbehaving. Parents and teachers will sometimes mistakenly believe an FAS child is simply noisy and doesn't listen. The situation is even more pronounced for children with partial FAS because they look normal, lacking the outward physical abnormalities associated with the syndrome. "(Partial FAS) means you didn't get recognized and you didn't get the resources," explains Koren. "If you get intervention you will do better." He said if a child isn't diagnosed early the problems tend to escalate. "Many of these kids have problems with the law because they have bad social adaptation," says Koren, noting they also drop out of school early and tend to abuse alcohol and drugs. When it comes to pinpointing the amount a pregnant woman needs to drink to harm her unborn child, Koren confidently enters a controversial area by saying a social drinker will not harm her child. Koren says he doesn't use scare tactics, but explains to expectant mothers that it is still unknown how much alcohol it takes to harm a fetus. But Dr. Christine Loock, a professor of developmental pediatrics at the University of British Columbia and a leader in B.C.'s FAS programs, adheres to the doctrine of total abstinence. "There's no known safe level. Don't drink," Loock tells pregnant women. "The more you drink, the more the effects." Caroline Joanisse wants everyone to understand what alcohol has done to her. "I want you to put down that I have no friends," says Caroline, describing her life as a teenager with partial FAS. Her frustration is visible as the teen with strong Native features and straight dark hair talks of the name-calling and isolation she has had to endure. With a new school year upon her she hopes that will all change. The 15-year-old hopes that in leaving her middle school after graduating from Grade 8 last spring, she'll be able to make a fresh start at a Manotick vocational school. She wants to blend in with students and to avoid her classmates' stinging comments. "I will be very glad because then I can start life over again," she says while sipping orange juice on the backyard deck of the two-story brick home she shares with her adoptive parents. "Hopefully I will have more friends than enemies." Bubbly and talkative, she's quick to point out the frustrations in her life, resenting the limits her parents set for her. At school the teen is supervised by teachers who have grown to understand her birth defect. She rides to her Cumberland home in a bright yellow school bus, where a nanny waits for her arrival. The teen, who is often teased about her weight, says she hopes she'll finally make friends closer to her own age at her new school. Right now the only people she spends time with in her neighbourhood are teens two to three years her junior. Caroline fondly remembers the happier times in elementary school when she wasn't so lonely. "Back then I had tons of friends," Caroline says. "Now I don't have any." Constant nagging and teasing by schoolmates has affected her self-esteem, leaving her angry with herself. "I like my body but my head shouldn't be on my body," she said. "Just because I need help more than others, it doesn't mean they have the right to tease." Caroline resents her schoolmates' comments and behaviour. She blames them for forcing her to leave regular classes and attend special classes with younger students. Her anger erupts when she arrives at the safe haven her adoptive parents Simone and John built for their family in a rural Cumberland neighbourhood. Caroline doesn't lash out at her classmates when they're being mean to her. Instead, she lashes out at herself, keeping her feelings bottled up until she arrives home in the afternoon and works through them in the sanctity of her bedroom. "I rarely ever go to anybody with my problems. I just fight it out in my room." *** This is the end of Part 1 of this article, Part 2 should be immediately following! *** - --- Checked-by: Rich O'Grady