I was very pleased to read the coverage in the Star Phoenix of Judge Mary Ellen Turpel-Lafond's ruling in the recent case against the 12 year old FAS arsonist. I applaud her decision as I am sure many other parent's of FAS/E children are doing. Our children are only 9 and 10 years old, and hopefully will never have to stand before a judge facing such charges. However, both of our children suffer from the effects of the alcohol, solvents and variety of narcotics that their birth mother abused during both pregnancies, and we are growing increasingly frustrated by the lack of services available to either our children or to us as parents of FAE kids. Without the necessary treatment and programming our children could very well become two more statistics. This is totally unacceptable in my view. Appropriate educational and therapeutic services are not only my children's right it is the law! A country that boasts of an 8 billion dollar surplus, one of the highest standards of living in the world and claims to have an educational and health care system second to none should be more than capable of providing these services. The fact that we do not is a national disgrace.
As an adoptive parent I have made several attempts to access programming for our children because I am well aware of all of the risks that are associated with FAS/E. Unfortunately, those services just don't seem to be available to us. There are very few doctors or educators who have a good understanding of this condition and any programs we have found are not specific to FAS/E and are not government funded. We have had our children assessed at a private learning institute and traveled 400 kms once a week to enable our children to have the benefit of educational therapy. Because of the distance, and expense we were unable to continue beyond a year, even though it was beneficial to our children. The cost was $36.00 an hour at 4 hours a week, for each child, and we could not even deduct it on our income tax, because Learning Disabilities, ADHD and FAS/E are not recognized as being disabilities by our government. I pay for private counseling at a cost of $50/hr for both myself and my children and one of our children requires three different kinds of medication in order to function in school, at home and in the community. Due to the learning disabilities that both children have they would each benefit from the use of a computer for doing written work but they do not qualify for special funding so we will probably have to purchase laptops for school as well at some point, in addition to the special software that they require. They also do not qualify for teacher aides so I am presently making arrangements to hire someone to tutor them after school. In addition, we have spent thousands of dollars in repairing damages to our home as a result of the impulsive destructive behavior that results from fetal alcohol damage. When I contacted Social Services I was told that they do not provide any assistance to adoptive families unless the special needs were identified prior to adoption. FAE is not evident at birth and the learning and behavioral problems usually don't become evident until the child is older. Social Services was well aware that the birth mother had a chronic substance abuse problem, but they did not make this information available to us, and apparently did not know that this would cause our children to have learning, behavioral and psychological difficulties. Because I previously knew of her history I was aware that these problems may surface at some point, but most adoptive parents do not have the benefit of this information and they adopt what they believe to be healthy babies only to find out after years of heartbreak, that their children have brain damage due to fetal alcohol exposure. Of course, since this was not identified prior to adoption, they do not qualify for any assistance either, and none of us get the support that we all desperately need in order to understand and cope with the very difficult challenges of raising an alcohol effected child. As a result many adoptive or foster placements break down, parents suffer from anxiety and depression, marriages fall apart and the kids end up back in the system or on the streets. The families who manage to stay together and cope the best they can, do so with great difficulty and at a huge cost emotionally and physically, to every member of that family. Nothing in the world can prepare you for the challenges of parenting an FAS or FAE child because until you actually live it the behaviors are inconceivable and pretty much indescribable.
The media has finally tuned in to this issue in relation to young offender's. However, before these kids become young offender's many of them are identified as having learning and behavioral problems. Because there are no adequate services for these kids they develop many of the secondary conditions that are associated with FAS. We know that FAS is the leading cause of mental retardation, learning disabilities, ADHD, and conduct disorder, and that kids who have FAS have a very high risk of abusing drugs and alcohol, developing antisocial behaviors, dropping out of school, teenage pregnancy, committing suicide and that they have a 90% risk of developing a psychological disorder or mental illness. I recently read that 80% of violent male offenders in Federal Penitentiaries have FAS/E and that at least 50% of youthful offenders have FAS/E. Why is it that we are doing nothing as a society to address these problems? My children do not qualify for any special services within the school, I can not find a program that deals with all of the aspects of this condition and I am not prepared to wait until my children get into trouble with the law to get them the treatment that would quite likely prevent this from happening in the first place.
We spend millions of dollars a year warehousing FAS/E offenders in adult and youth correctional institutions even though we know it serves no purpose other than to ensure that they will undoubtedly, reoffend once they are released back into the community. Serena Nicotene was released from the Paul Dojack Center because the Social Workers that are employed there had very little knowledge in the area of FAS even though the majority of kids within those walls are alcohol effected. Why is that? A judge, who sees FAS kids on a daily basis, obviously did not understand the implications of this disorder either. This lack of understanding among the very people we pay, and trust, to protect us, puts us all in danger every day, because they are making irresponsible decisions as a result of their ignorance regarding this condition. It is also a huge disservice to the youth who are being deprived of the help they need because of the lack of information and resources available to those who make decisions regarding their fate.
Judge Mary Ellen Turpel-Lafond's ruling is a step in the right direction because it forces the government to address the special needs of FAS kids who have already become involved in the young offender system. Unfortunately, it does nothing to prevent these kids from becoming involved in crime in the first place. FAS kids are born to parents who have substance abuse problems and who are very often FAS or FAE themselves. As a result, many of these children come into contact with Social Services at some point and are subsequently placed in care. Those who are made permanent wards are placed in adoptive homes or in long term care. This provides a window of opportunity for identifying and treating these children because most foster and adoptive parents would gladly do whatever it takes to assist these children and provide for their special needs, if the resources were available and affordable to us. Providing community based programming to these children and their parents through the form of early intervention and ongoing treatment would greatly decrease the number of youth who come into conflict with the law later on.
The public is rapidly losing confidence in the Department of Social Services because the approach to protecting children continues to be reactive, rather than proactive and preventative. We are reminded daily of how the system doesn't work and every change in policy seems to be a step backwards. Intervention only takes place after a child has either been seriously harmed or has done serious harm to another. By this point so much damage has been done that it is often irreparable. Cost effectiveness takes precedence over the needs of children, and the rights of parents and preserving the sanctity of the family unit, are put before the safety of children but these approaches ironically result in much higher costs to us all, both socially and financially over the long term.
The majority of these kids are not being raised by their biological, substance abusing parents. Most of them are in and out of foster care, group homes and institutions and many other's are in permanent foster care or adoptive homes. They have parents who care and are committed to raising them. If Social Services would provide the information we need to allow us to identify and deal with the special needs of our children and if our educational and health care professionals were given the resources that are required to put the appropriate programming in place we could keep these kids at home, in school and out of trouble. There is no cure for what they have but the with the right combination of medical treatment, educational programming and a loving, secure and structured home environment many of these kids can succeed in life. It is ludicrous that they should have to burn down somebody's home or kill a few people before these resources become available to them. It's even more ludicrous to support the right of a pregnant woman to do irreparable damage to an unborn child through the use of alcohol. This is a phenomenon that exists soley because we, as a society condone the use of alcohol by pregnant women. When I watch my children struggle, day after day, because of conditions that were 100% preventable it not only breaks my heart, it makes me very angry. How can we allow this to go on? Why should these innocent children have to pay such a huge cost because of the apathy of adults? There is no justification.
Errin Weigel
Quill Lake, Saskatchewan
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