Help and hope for people with FAS/FAE

Posted: Thursday, May 25, 2000

My husband and I are the parents of two adopted children who struggle with Fetal Alcohol Syndrome/Fetal Alcohol Effects (FAS/FAE), a preventable birth defect caused by prenatal exposure to alcohol. It is an invisible brain disability that affects the central nervous system causing problems with behavior, learning, memory, attention, problem solving, impulsiveness and cause and effect. Alaska has the highest documented rate of FAS/FAE in the nation.

Through the efforts of U.S. Sen. Ted Stevens and the Department of Health and Social Services Commissioner Karen Perdue, the state of Alaska is receiving $5.8 million per year, due to a five-year grant, to refine the state's comprehensive FAS plan. Diane Worley, state FAS coordinator says, ``We want to change the system as we know it and improve the service delivery system for both high-risk women who potentially give birth to these children, and to the individuals and families already affected by this lifelong disability. Our goal is that at the end of five years we will have an improved system to better serve this population.''

Early and appropriate interventions will reduce the cost of serving these people. Political, educational, medical, social service, public safety, vocational, and criminal justice systems need to become educated about FAS/FAE. They must work together in cooperation and collaboration with birth, adoptive and foster families and individuals born with this disability.

Juneau has the opportunity to join other Alaska communities to develop its own FAS multidisciplinary team to create a plan that would include identification, diagnosis and individualized services. I strongly urge the community of Juneau to receive the training in fiscal year 2001. For more information on how to become eligible to receive this training contact the state FAS office at 465-3033.

Presently, no appropriate interventions or services exist in Juneau. It has been our experience that children and adults with FAS/FAE are thrown into well-meaning systems that are misguided and inappropriate. Adoptive and foster parents are constantly being blamed for causing their child's disability. There is reluctance to diagnose FAS/FAE because it is seen as a label and not a solution. Yet a definitive diagnosis is crucial in order to receive appropriate services. In the words of Dr. Ann Streissguth, ``Diagnosis provides visibility, and visibility prompts solutions.''

Since our children were toddlers, we have consistently, and persistently, been forced to fight for diagnoses and services, that have been tragically inadequate. Many therapists have told our children that our poor parenting caused their problems. That kind of blame has been hurtful and inappropriate.

Our children are considered treatment-resistant and noncompliant. Consider this analogy: What if you had diabetes, but were misdiagnosed and treated for cancer? The treatment would not work. Wouldn't you become treatment-resistant and noncompliant too? Imagine the outcry and lawsuits when it is discovered the diagnosis and treatment were wrong. For us, there is no outcry when a mistake is made.

Alcohol-related birth defects are not just a child's disability - children become adults with the same disability. Misdiagnosis and inappropriate treatment worsen the symptoms as a child grows into adulthood. They frequently end up in the criminal justice system. When released, conditions of probation thrust them into further inappropriate diagnosis and treatment. District attorneys, public defenders, judges, and prison staff become tired of the recidivism. In the process, a basically good person can end up a criminal.

A friend used this analogy to explain FAS. When a puppy has an injured paw, the injury is obvious. When a child has an unseen injury, such as FAS, we don't know what to do. We understand a puppy with an injured paw. There is a universal sympathy and concern. We don't understand the invisible brain injury. If we touch the injured paw, we understand why the puppy snaps at us. If a person with an invisible brain injury snaps at us, we don't understand. Rather than understand, we blame.

After 24 years and 21 incorrect diagnosis, our son was finally diagnosed with FAS three weeks ago - 24 years of needless pain and suffering. Our son is a good person who is trying his best to become a contributing member of society. Given time and understanding, he will. We hope people become educated and understanding, so our son, and others like him, can reach their full potential. By providing appropriate treatment, professionals can help those with FAS/FAE and their families find meaningful and hopeful ways to deal with their painful realities. I am tired of being forced into the role of being a ``pain in the butt'' parent.

Laura E. Rorem is an advocate for people with brain disorders and their families. She is a board member of JAMI and the national board of the Lutheran Network on Mental Illness/Brain Disorders. She served on the Alaska Mental Health Board for five years.

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