A lifetime of grief: Fetal Alcohol Syndrome leaves families in anguish. Here's how the prime minister can help combat it.
The Ottawa Citizen
Wednesday, August 7, 2002
Page: A15
Section: News
Byline: Bonnie Buxton
Source: Citizen Special
In a recent statement regarding his son Michel's arrest on a sexual assault charge, Prime Minister Jean Chretien said, "We deeply appreciate the courtesy that Canadians have always shown in respecting our family's right to privacy on personal matters." Yet news of Michel's latest brush with the law resonates deeply with hundreds of parents in Canada who know all too well the pain the Chretien family has suffered.
I am an adoptive parent, and I correspond daily with many others whose children commit actions that neither we nor they can control. We are birth, adoptive and foster parents of children with Fetal Alcohol Spectrum Disorder (FASD) -- an umbrella term that includes Fetal Alcohol Syndrome, Fetal Alcohol Effects, Alcohol-Related Neurodevelopmental Disorder, and the like.
Prime Minister Chretien's official statements have never used the words "fetal alcohol" as a possible cause of his son's lifelong problems. But Michel's aboriginal background, the fact that he was adopted from an orphanage, his history of addiction and trouble with the law strongly indicate this could be the case. We hope that his lawyer will insist he see an expert diagnostician. If Michel Chretien is found guilty, and is indeed struggling with fetal alcohol damage, this could result in more appropriate sentencing, and ways of helping him control his impulses.
Countless adoptive parents across Canada share this puzzling, anguish-filled story. A middle-class family adopts a beautiful child or infant, hoping to give him or her a better life. The child, often with a normal IQ, does not do well in school, may drop out early, drift into drugs, alcohol, crime and homelessness -- despite special education, possibly private school, and a series of counsellors, psychologists and psychiatrists. Lacking knowledge of fetal alcohol, therapists often diagnose such children with attention deficit hyperactivity disorder (ADHD) and may also blame parents for being too rigid or controlling, or for making the child the scapegoat for hidden family problems.
One of my correspondents was at the Montreal court supporting her own adult son in the early 1990s, at the same time as one of Michel's cases was being tried. She wrote me of the constant presence of Mr. Chretien and his wife, Aline, and of the love, concern and pain in their faces. Many parents in such situations give up on their child. The Chretiens did not. Like most parents of children with FASD, they kept hoping.
But University of Washington research indicates that the majority of individuals with FASD will have substance-addiction problems during their lifetime. Nearly 60 per cent of adults with FASD will have trouble with the law; 80 per cent will have difficulties with employment and living independently, and 95 per cent will be diagnosed with a mental-health disorder during their lifetimes. These researchers estimate that one-in-100 people in industrialized countries has FASD. That's about 300,000 Canadians, all struggling with permanent brain damage that could have been prevented.
Each one will cost the public up to $2 million in his or her lifetime for special education, social services, extra medical care and possible involvement with crime.
This cost does not include the loss of productivity -- those missing artists, poets, athletes, scientists and thinkers who can never fulfil their genetic potential because of prenatal alcohol. Nearly all of us parents of alcohol-affected people catch occasional glimpses of the person they would have been. I believe that my daughter, gifted with animals but lacking academic skills, would have been a veterinarian, for instance.
Prime Minister Chretien is likely aware that Canada is working harder than any country in the world to combat FAS and related disorders. However, much more needs to be done. Here are some things that could help:
- Recognition that FASD is not limited to the aboriginal community, and that research indicates that even so-called "light" maternal drinking in pregnancy can affect children's learning and behaviour.
- Legislation regarding warning labels on alcohol beverage containers, with the message that alcohol during pregnancy can permanently damage the fetus.
- A large national communication campaign warning of the dangers of alcohol during pregnancy, similar to Health Canada's fine campaign against second-hand smoke.
- Readily accessible alcohol and drug rehabilitation programs for adolescent females (currently almost nonexistent), and for all women of childbearing age.
- Help for exhausted parents, who are on the front lines dealing with the effects of prenatal alcohol 24 hours a day, seven days a week. (Nearly all of the federal FAS funding has gone to professionals.) Such help might avoid the numerous adoption and foster-care breakdowns of such children.
- A program to develop effective, long-term residential housing for adolescents with FASD whose behaviour makes it impossible for them to live at home, and for adults with FASD who now make up a significant number of Canada's homeless.
- Permanent federal disability pensions for adults with FASD, to enable them to work part-time in entry-level jobs, but still live decently.
- A program to screen all incarcerated offenders for FASD, and special programs developed for their learning and behaviour problems.
But what would help most of all would be a statement from the prime minister himself, indicating that Fetal Alcohol Spectrum Disorder is a health issue, not a moral issue, and that women must not be blamed for drinking during pregnancy, but helped to overcome their addictions. The public needs to know that our alcohol-affected children are not lazy, evil, stupid, or weak-willed, but struggling with permanent, invisible neurological damage inflicted on them before they were born.
We parents of children with FASD need the prime minister's promise that Canada will no longer consign one in 100 children and adults to addiction, crime, poverty, homelessness and the strong likelihood of bringing more damaged children into the world. As Jean and Aline Chretien have lovingly demonstrated over and over, we as a nation must not give up on them.
Bonnie Buxton is co-founder of International FAS Awareness Day, Sept. 9. She is co-ordinator of FASworld Canada, which works to build awareness of Fetal Alcohol Spectrum Disorder.