Birth and Life of an Iceberg
It’s been a heady run – 20 years! Iceberg, our little newsletter from Seattle, was born in an era that is hard to imagine today, and for 20 productive years has filled a communication gap that was unequaled. But times change, technologies change and needs change.
Fetal alcohol syndrome (FAS) was first described in 1968 by Dr. Paul Lemoine, a pediatrician in Nantes, France. Lemoine worked in a Pouponneire (a home for babies and young children, where their mothers, who for some reason couldn’t care for their children, could leave them for safe and loving care), where he noticed unusual growth and facial features among many of these residents, and wrote a paper describing 127 such children. After the paper was turned down by one of the major French pediatric journals, he and his colleagues published the data in a regional journal that did not receive international circulation, so his work was relatively unnoticed at the time.
In 1973, eight such children were independently described by Dr. David W. Smith and colleagues in Seattle, who published their observations in the premier international medical journal Lancet. Smith was not only a pediatrician, but also the head of a new field which he called “dysmorphology.” By 1970 he had published the definitive text on recognizable patterns of human malformation (Smith 1970). Later in 1973 Dr. Smith and his fellow, Dr. Kenneth Lyons Jones, published a second paper describing three more children, one of whom died a few days after birth and an autopsy revealed a very damaged brain, and another whom was severely affected and hospitalized for many months after delivery. These babies and children had in common mothers who abused alcohol during pregnancy. Jones and Smith (1973) gave this syndrome a name: Fetal Alcohol Syndrome (FAS), which certainly caught public attention. By 1978, Dr. Sterling Clarren and Smith published a paper on 245 individuals from around the world who had been diagnosed with FAS. By 1979, the number known with FAS had reached 618 (Smith 1979).
During the next few years, numerous scientific papers were published in many countries, as pediatricians and psychologists documented and described children born to alcoholic mothers. These papers and early books were not “best sellers,” but 16 years later Michael Dorris, already a highly acclaimed author (for Yellow Raft in Blue Water, 1987), published an autobiographical account of the little Native American boy he had adopted from Alaska as a young college professor. The book (The Broken Cord, 1989) not only became a best seller, but myself, other early FAS researchers, and the FAS research from Seattle were described in the book. The following year a 20/20 program on ABC-TV featured Dorris and his son, and Dr. Sterling Clarren and I also appeared. Between spring of 1990 and mid-January 1991, the Fetal Alcohol and Drug Unit at the University of Washington Medical School in Seattle received over 600 letters from individuals and families across the U.S. and Canada. They all contained the same basic message: "Please help us with our situation. We are desperate for information in dealing with FAS/FAE." We were overwhelmed; boxes were everywhere in our offices, overflowing with letters.
Dale Leuthold, the single mother of an adopted daughter with FAS, had been nagging several of us for some time about the need for more public information about FAS to help parents and teachers and others caring for these children. Finally, in 1990, we decided to do something about it. A small group of us in Seattle formed a nonprofit organization called the Fetal Alcohol Syndrome Information Service (FASIS) in order to publish the first FAS/FAE newsletter that we were aware of. Dale was the founding editor who essentially taught us how to do it – and did a lot of it herself. The first Editorial Board consisted of Sterling Clarren, Diane Davis, Richard McKenzie, Peter Petrakis, Sandra Randels, Ann Streissguth, Marceil Ten Eyck (Vadheim) and Barbara Von Feldt (O’Hara).
Dale chose the name Iceberg, designed the first logo (see above) and penned the masthead: “an Educational Newsletter on Fetal Alcohol Syndrome (FAS) and Fetal Alcohol Effect (FAE).” In her first editorial statement in the first issue (February 1991), Dale said:
“The logo you see here symbolizes a concept that applies both to fetal alcohol syndrome/fetal alcohol effect (FAS/FAE), and to the powerful social, political, and personal ramifications that are associated with this disease. A small part of the problem is visible – but the bulk of the problem is obscured and hidden.
"Iceberg will be talking to, for, and about the problems and issues faced by children affected by prenatal exposure to alcohol and to the parents, families and others concerned about them. Our focus is simple. The problem is enormous and complex.
"We will provide accurate information, facilitate formal and informal sharing of experiences; keep track of and inform readers about the political realities that influence the availability of services to children with FAS/FAE; promote public awareness of the problem of FAS/FAE; salute public officials who support policies or services that are beneficial to the needs of children with FAS/FAE; keep our readers informed about legislation on both local and statewide levels that influences services for these children; and make all the information we are aware of available to children with FAS/FAE and their families.
"Like an iceberg, the visible portion of the problem gives us warning of hidden danger. We are not sure of the extent of that danger. We don't know how big it is. We are sure the danger is real, but we are in the process of learning how to best use our resources and energies to fight it. We ask that you join us in this difficult task"
Dale Leuthold was truly a pioneer. She was courageous, uncompromising and determined. She gave two years of her life to Iceberg as a volunteer editor, but never gave up her passion to educate and help families of children with FAS/FAE. Dale died on March 1, 2003. Her memorial service was a time of sadness at the loss of such a talented woman, but also a celebration of her many talents, her vision and her determination. Dale was not only the first editor of Iceberg, but also the energizing force behind its inception.
Fortunately, with the help of several more editors (including Tina Talbot and Janice Wilson Vaché), and with enrichment of the Editorial Board (adding members such as Sharon Beck, Charley Huffine, Tracy Jirikowic, Julie Gelo, Jim Fox, Kieran O’Malley, Katy Vasbinder, Nancy White and Paul and Heidi Connor) as old members dropped off or became inactive, Iceberg has continued strong to the end. With the additional support of a small stipend from the Alcohol and Drug Abuse branch of the state of Washington, we have been able to publish four issues a year for 20 years. While articles from the most recent years will remain on this Web site, Iceberg will no longer be adding to the FASD conversation. But we are proud of what we have accomplished.
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Psychiatry and FASD
As we prepare to leave the Iceberg, we hope it has melted a bit due to the efforts of numerous FASD advocates. I have written articles for the Iceberg in years past on relevant issues drawn from my work in other aspects of child and adolescent mental health as a community psychiatrist. Some of my wonderful colleagues in psychiatry have done the same. The efforts of a number of these peers have brought FASD closer to the mainstream of psychiatry.
Parents and professionals from many disciplines, in and out of the fetal alcohol advocacy community, have been a major force in increasing awareness of FASD within the professional community generally. I give credit to Alan Unis, M.D., now in Spokane, Washington, for his early championing of the research on neurodevelopmental issues related to fetal alcohol exposure, and to Kieran O’Malley, M.D., for his very successful integration of the neuroscience of FASD into practical measures for clinicians. Both had prominent voices in mainstream child and adolescent psychiatry. As the Iceberg grew out of its own adolescence and began to acknowledge the calamity of FASD in older adolescents and young adults, I worked hard to raise the consciousness of psychiatrists in key positions in our state and around the country to the veiled presence of individuals in trouble due to hidden FASD. I gave FASD presentations numerous times at psychiatric meetings and urged my colleagues to understand that FASD is omnipresent in our patient populations. In a recent edition of Iceberg, Bruce Gage, M.D., the new director for psychiatric services for the Department of Corrections in Washington state, acknowledged the impact of FASD and other diffuse brain damage syndromes on prison populations.
These peer efforts have been effective, especially by sensitizing many psychiatrists to think about an Alcohol Related Neurodevelopmental Disorder (ARND) as a possible diagnostic explanation on their "differential diagnosis" list
A list doctors make that encourages them to think about alternative explanations for certain symptom pictures..
As a result of our joint advocacy efforts, some psychiatrists now can consider FASD when they ponder why a child with ADHD fails to improve with stimulant medications. They have a viable explanation why the teenager who seemed so likely to have bipolar disorder continues to show manic-like bad judgment after a host of bipolar medications. With a bit more family history they may see that this youth has a brain that was impacted by fetal alcohol exposure. It has been gratifying to me to witness these changes and to play a role in improving awareness of FASD amongst my colleagues in both child and adolescent and adult psychiatry. I am thankful that Ann Streissguth, Ph.D., brought me into the FASD advocacy community as a member of board of the Fetal Alcohol Syndrome Information Service, the publisher of Iceberg.
For psychiatrists and other physicians, there are still barriers to including FASD on their mental lists of the common causes of learning and behavioral problems, of vocational failures and of the deterioration of young adults into criminal activity. Youth with subtle ARND are not stigmatized by their appearance but may act in ways that are seen as classic conduct disorder (CD) or oppositional defiant disorder (ODD). I have made the case to leaders in psychiatry that the classifications of CD and ODD have no real substance to them, no common etiology or coherent characteristics. I submit that CD and ODD are best understood by what are considered their “co-morbidities.”
Science is supposed to favor the most efficient conceptualization of a problem. Therefore when a youth acts in ways that reflect unusually bad judgment, poor impulse control and inability to learn from his or her experiences, why not think of the neurodevelopmental effects of fetal alcohol exposure as the way to explain this complex of symptoms in a child or youth? This would parallel our approach to other disorders, such as when a child has episodes of behavior that reflect classic manic symptoms and we consider this a behavioral expression of bipolar disorder; and as anxiety symptoms are considered part of anxiety disorder, or autism symptoms part of an autism spectrum disorder.
The CD or ODD diagnoses add nothing to our understanding of the child or their needs, they only serve to stigmatize youth expressing their mental health problems behaviorally. Behavioral expression is a normal, developmentally understandable means for children and youth to express distress and self-regulatory problems. Because of the frequency that pregnant women still drink alcohol, and because of Dr. Streissguth’s estimate that one in a 100 births have some sign of intrauterine alcohol exposure, physicians need to see FASD, especially the hidden ARND syndrome, as a common condition even if pediatricians can only rarely diagnose the full syndrome of fetal alcohol exposure.
I have long noted that feelings of professional helplessness can cause physicians to under-diagnose conditions they cannot easily fix with a procedure or a pill. Failure to diagnose an individual as having a brain damaged by alcohol, malnutrition, head trauma or any other misfortune is widespread in the medical community. Some doctors even question what benefit such diagnoses provide for families given their perception that nothing can be done for these youth. Parents with children that are immature and impulsive, with strikingly poor judgment for their age and a tendency to learn social lessons very slowly, seem to want to know the truth even if they have to face the fact that their own drinking harmed their children. When parents know what is wrong with their children they can settle into the reality and cope. If they are then connected to parents with similar children but who have found solutions to the myriad of problems that arise in raising such youth, they are empowered to do what they can to improve the quality of the child’s life.
So much more could be done if we recognized the importance of psychosocial rehabilitation and gave credit to its practitioners. In children’s services, wraparound methodologies have proven to be very practical and helpful to young people with FASD and their families. A wraparound protocol is a practical planning process that can empower parents to take care of a difficult child because the family is surrounded by professionals, family and friends that care about the child and provide expertise and support. The process is strength based and aims to ask the prime psychosocial rehabilitation question: “Tell me what you CAN do, not what you can’t.” Practical problem solving, a core feature of psychosocial rehabilitation, is at the core of the wraparound process. Central to such wisdom is the knowledge that meaningful structure protects those with impulse control problems as it protects the community. Parents, teachers, day care staff, coaches and even sometimes mental health professionals with an interest in psychosocial rehab invent their own practical solutions. They can teach those physicians who are willing to see what can be done for those with a “hopeless condition” (i.e. a condition that does not respond to a medication).
Another sign of the psychiatric profession’s ambivalence in diagnosing the psychiatric impact of a damaged brain is our failure to address such conditions prominently in the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV currently). I have maintained that the DSM-IV code 310.1 – “Personality change secondary to X medical condition,” is the best we can do for making the diagnosis. In the case of fetal alcohol exposure that exposure is the medical condition. The text says that “personality change” can be the change from what the personality would have been had the medical event not occurred. It would be very fitting if the much anticipated DSM-V had a specific place for the psychiatric syndrome associated with FASD.
However, we need to keep in mind that FASD is a pediatric diagnosis. Its focus is more on the classic “Seattle Criteria” of dysmorphology and more severe brain effects that cause mental retardation. Some have argued that FASD should also be a psychiatric diagnosis. I have argued that the more specific brain effects embraced by the term Alcohol Related Neurodevelopmental Disorder are more specific to the psychiatric syndrome and therefore ARND is a much more specific and accurate term. But don’t be surprised if there are no changes in DSM-V related to FASD. Most of psychiatric practice orients around mainstream conditions that are more directly improved by medical interventions available to a psychiatrist in his/her clinic. Even the classic condition of autism, grounded in the history of child and adolescent psychiatry, is ever more referred to as a “neurological problem.” It is my observations that the field of child and adolescent psychiatry, having failed to find a medical treatment for autism, has abandoned it due to the frustrations it presents. I would maintain that FASD is at risk of being another “orphan” diagnosis unless consumer advocates demands that states, through their universities and medical schools, take on such syndromes as their psychiatric challenges.
In Washington state we are fortunate that the division of child and adolescent psychiatry is chaired by Brian King, an individual who is an expert in the field of autism and is not afraid of other such challenging conditions as FASD. And, the University of Washington’s Center for Human Development and Disabilities (CHDD), as a jointly staffed and funded department, is well positioned to expand its involvement in FASD. Historically that interdisciplinary program has done a good job of recognizing FAS as a common condition. Dr. Streissguth’s work with her early medical colleagues David Smith, M.D., and Sterling Clarren, M.D., (both pediatricians) has assured that FASD issues will be taken seriously at the University of Washington. Similarly, the school of nursing at the UW is intimately associated with the CHDD through its certification program in infant mental health and its commitment to mental health in early childhood. They, too, are sensitive to early detection of FASD. I would hope that some consideration could be made to housing the Fetal Alcohol & Drug Unit closer to these supportive departments and that their collaboration might be a model nationally for an integrated approach to diagnosing and treating children with FASD. I was trained in a progenitor of the CHDD as a medical student and later in my child and adolescent psychiatry training. It was there that I met Dr. Streissguth, then a young up-and-coming psychologist researcher. For many years child/adolescent fellows were sensitized to FASD conditions in that setting.
My final words in this wonderful newsletter are to urge that this history and tradition be revisited with professionals teaching their peers. I hope that the UW now takes international leadership in exploring methods to treat FASD. Methods that empower families, are strength- and needs-based, and which strive to coordinate care such as in the wraparound process, may hold some answers for future research in the treatment of FASD. I ask for this new commitment in the spirit of the pioneers at the University of Washington who have been our heroes in coming to understand these syndromes.
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DSM-V: Making the Case for an FASD Behavioral Phenotype
In the beginning there was Iceberg. Ann Streissguth, Ph.D., and her colleagues had been studying the effects of prenatal alcohol exposure since 1973 and were well aware of what was lurking beneath the waterline. I came somewhat later to the scene in 1978 when my husband and I adopted a 2-year-old girl, Cheryl, and her 4-year-old brother, Russell. In those ensuing five years, Dr. Streissguth became famous in the research world for her statement that FAS was only the tip of the iceberg.
The stark reality of FAS didn’t emerge in the public consciousness until the spring of 1990 when ABC aired the first television interview with Michael Dorris. In the 20/20 segment Michael publicly described the common behavioral pattern of FAS through his adopted son, Adam. My husband and I were stunned because he was describing our home life with Russell. When the show ended I got on the phone to the University of Washington Book Store to order a copy of Michael’s book, The Broken Cord. Time stood
still the following week as I intellectually devoured each page. I was mesmerized. How could he perfectly describe my son’s strengths and weakness even though the IQ of each boy was totally different? I was not alone in seeing my child in that 20/20 segment. According to the producers of the TV show, thousands of other families also identified with the behavior pattern.
As public awareness increased through various TV and magazine interviews, two obstacles to a full FAS diagnosis gradually became apparent to me: first, that most foster and adoptive families would not have access to their child's prenatal history, and second, it was likely that not all children would have the expected facial features of FAS. I realized that my husband and I had a lot of work to do, and that we were completely unprepared for the task.
I had many doubts and questions. Was there a way to get copies of Russell’s prenatal history? What if his facial features did not meet the criteria for an FASD diagnosis? What would happen to him? Without an appropriate diagnosis how would he qualify for services? Would the taunting by his peers never end? What would happen to his self esteem?! Would he never be understood as the bright, funny, loving, intelligent person he was (who routinely got A’s in math and science)?
As it worked out, Russell did meet the diagnostic criteria and received an FASD diagnosis from Dr. Sterling Clarren at Children’s Hospital in Seattle. As I left the craniofacial clinic after the diagnostic appointment, I asked the head nurse for referrals so I could learn how to take care of a child with FAS. She looked me in the eye and said, “Jocie, there aren’t any referrals.” I gasped and blinked, “None?” She shook her head sadly from side-to-side.
At first I felt emotionally devastated that there was such void of information about caring for a child/teenager with FAS. And then I got mad. After thinking it over, I thought, "That’s impossible and completely illogical. There have got to be other parents who are raising or have raised kids with FAS and I’m going to find them." The problem with this disability from my perspective was our son’s inability to connect cause and effect and behavior to consequence. All of the counselors that our children had seen over the years had been looking for something to fix. They had no idea that this unique cluster of behaviors was the result of permanent organic brain damage. Surely other parents had similar experiences, and I wanted to know how they solved those problems.
As we began our search for answers we did find one unexpected source of strength:
the managers and staff of the Washington State Adoption Support Program. This professional group was on the cutting edge of change because they listened and didn’t jump to conclusions. In February 1991 they asked me to write a report about my family’s experience raising a child with FAS so they could mail it to other parents to gauge how many might be unknowingly raising affected children. I was on my own. I had not yet talked to or met another parent of a child with FAS so I did not know what to say or how to say it.
The first thing I did was to ask for letters from all of the professionals who had been treating Russell for the last five years. I contacted people who had independently observed his behavior in various social situations: the church youth leader, the school counselor, his homeroom teacher, his personal psychiatrist, the school
principal and the doctor who did Russell’s neuropsychological evaluation. I laid the descriptions side by side with the written craniofacial report to examine the evidence I had beyond our own observations. Then I analyzed and synchronized the
information and with a great sigh I wrote a letter to the Adoption Support families.
The response to the Adoption Support letter was overwhelming. Parents around the state clamored for more information. In the summer of 1991 we had enough families to begin a non-profit organization, which eventually came to be called The FAS Family Resource Institute (FAS*FRI).
All of this history was 19 years ago. Our board of directors grew to include 27 parents and several long-suffering professionals who stood like faithful sentinels to guard, guide and protect us as we struggled to gather and analyze the stories that we call "The Collective Family Experience" and to further develop the common behavioral check list. Although we at FAS*FRI literally had hundreds and hundreds of projects and programs over the years, our one over-arching goal was always to identify a common FAS behavioral profile independent of the IQ level of the affected individual.
The purpose for this journey down memory lane is to make the point that
despite the time, effort and quality of work by researchers, service providers and family advocates to increase public awareness on the need for legal recognition of the behavioral profile of FASD, we recently learned from the 56th Annual Meeting of the American Academy of Child and Adolescent Psychiatry, that psychiatric training in FASD is “inadequate and inaccurate.” When you consider the wealth of data that has been gathered, analyzed, compiled and disseminated by Iceberg and FAS Times alone over the last 18 years, this report delineating the state of the psychiatric field and FASD is inexcusable and a violation of the public trust. To remedy this situation we would like to propose that the DSM-V committee of the American Psychiatric Association immediately arrange for a comprehensive FASD Summit to gather the research that has already been done on the specific behavior phenotype of FASD.
Having a tool to identify those FASD based solely on behavior characteristics is a huge step forward. The challenge under the current tight economic condition is to keep the behavioral profile alive and vital. What the future will look like for those who do not have the facial features associated with FASD will largely depend on whether or not the DSM-V officially recognizes behavior as a basis for identifying individuals with FASD. The impact of this will reach into our homes, schools and criminal justice system. We have reason to hope for a better future for those with FASD because we can now see how to measure more of the iceberg. Over the years we parents have learned that awareness of the behaviors that are the result of neurological damage can make the difference between success for our children and frustrating failure.
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Dotting our I’s, Crossing our T’s
In summer of 1992, I was an intern at the March of Dimes Birth Defects Foundation in Seattle, Washington. I had not heard of fetal alcohol syndrome until I took the job, but soon learned plenty. FAS prevention was the primary focus of the Seattle chapter’s P.R. efforts, and a publicized incident between a bar server and a pregnant customer had caused a lot of sudden attention on the syndrome. My boss, Nancy White, who was also a board member for a fairly new newsletter about FAS called Iceberg, asked me to write an article for the newsletter. I knew that luminaries of both the FAS research world and of outreach groups were board members, so I knew only that the article had better be good. I did not yet know that I would continue to be involved actively and tangentially in FAS awareness and Iceberg for 18 more years.
My internship at the March of Dimes later became a public relations position that I held for a couple of years before moving on, but Iceberg then became one of my first freelance jobs as I edited articles and designed the traditional newsletter for print. I continued to work for Iceberg in this capacity for roughly 14 years, minus a couple years off before the newsletter’s transition to an online-only publication in 2004. The span of years in Iceberg’s issues highlights the evolution of FAS awareness and treatment. For me personally, it informed my decisions during my own pregnancies. I was able to pass on what I’d learned to friends that, knowing I worked for an FAS publication, asked whether alcohol really should be avoided during pregnancy. And perhaps Iceberg will serve to inform another generation as I’ve explained to my kids what I’m working on.
If Iceberg has touched me – who has no known presence of FAS among my friends and family – so fundamentally, I confidently predict it has touched those family members seeking understanding or treatment for children with FASD, or professionals looking for new modalities in FASD treatment, or teens and adults with FASD looking for an outlet for their poems, artwork and thoughts. Farewell, Iceberg. Readers will now turn to a new generation of newsletters, Web sites and blogs, but Iceberg’s legacy is assured.
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One Brief Moment in the Life of a Parent with a FAS Adolescent
He walks in the door after school and I ask him if he did his homework.
He blinks and smiles at me guilelessly, “Yeah, I finished it at school.”
I feel the familiar pressure in my chest. Here we go, I think.
“Can you bring it to me please? I would like to check it.” He looks at me, but doesn’t move.
“I need you to bring me the homework. Come on.” I need to start dinner and want to get it over with.
He goes into his room. I look at the clock. It is 3:45 p.m. I walk into the kitchen and pull out the hamburger meat and put it on the stove. I look at the clock. It’s 3:55. His room is less than 15 feet from me. It’s not like he needs to walk from the next county.
“I’m waiting for you to bring me your homework!” I yell out in reminder. My head is pounding. I don’t want a fight today.
“I’m getting it!” He sounds as irritated as I do. I know that if this is going to get done today, I am going to have to go to his room, yet I really don’t want the fight. I sigh, square my shoulders and walk to his room.
He is exactly where I expect him to be. The TV and the Nintendo are on. His fingers are rapidly manipulating the controls. I watch how well he plays; I understand his need to escape to this world where he succeeds, but I need him to succeed in this world too. I accept my role as evil adult, the dark one who is out to ruin his life. I quietly call out his name. He jumps and turns off the game, as if I won’t notice that he hasn’t done what I asked.
He stands there looking at me blankly.
“Why haven’t you done what I asked? I’ve been waiting for almost half an hour.” He stares at me. His eyes dart back and forth as he tries remembering what was asked of him.
“Bring me your math homework!” I demand. His eyes dart to the backpack and I pick it up, opening it looking for the elusive piece of paper that I know will not exist. I wonder which of us is more disabled. Why do we dance this same dance every day?
I gesture to the backpack, “Where is it?” He frowns sullenly.
“I lost it.” He mumbles.
I never know what the truth is. Did he actually do it and lose it, or did he not do it at all? The result is always the same. Either way, we both know, he has to do it with me and this is where the fight always begins.
“Alright,” I tell him, “Grab your book and let’s do it at the table.”
I walk out of the room to ignore his mumbling backtalk. I could stop and challenge him about his attitude, but the thing with FAS and adolescence is to pick and choose your battles. Attitude isn’t the fight right now; following through with his homework is the battle of the moment.
He slams his book on the dining room table. I have two ways to handle it. I pause. It could go either way. Is it better to escalate and get the verbal argument over with, or just get to the homework? I compromise with humor.
“Hey, don’t take it out on the table. It doesn’t like math either.”
I hold my breath, pull out a piece of paper, put his name on it and ask him the page. He doesn’t know what it is. He has no recall. I reach into the backpack and find the binder reminder where his one-on-one aide has written the assignment. He has trouble copying notes from the board. His brain leaves out large important portions.
We open the book and I begin to show him how to solve an algebra problem. When he is on, he is brilliant, but then there are the days, for no explainable reason, that his brain is just turned off. I notice him looking out the window and curse under my breath. It’s going to be one of those kinds of days. It’s the night before trash day. I realize it is not going to be a good night for learning. Trash day means he is going to procrastinate. He loves to recycle, work on the lawn, and take out the trash. It is his favorite pastime. His brain has left the house, and is mentally taking out trash.
I tap the paper to get his attention, he frowns in irritation. I verbally prompt him.
“What do you need to do first?”
He stares at the paper. The look on his face tears at my heart. It is the face of a person with amnesia. He has no memory of ever having done this sort of math problem before. Sadly, it the same kind of math problem he was able to complete in fourth grade, fifth grade and even in ninth grade, but tonight in tenth grade he is a different kid, a kid who has never seen this math problem. The knowledge he has learned and even mastered has been filed in his brain, but the file clerk in his brain can’t remember what file he put it in. I again ask him about the first step. He shoves the paper away.
I calmly just take it one step at a time. I ask him a question to test if he is following me, but he doesn’t respond. I am frustrated because he is giving up. If I don’t give up on him, then damn it, he isn’t allowed to give up. I raise my voice and tell him to try harder. To focus. I pop the cork. He blows.
He doesn’t even blow about the moment. He blows about the last 16 years of his life. He blows about his birthmother abusing drugs and alcohol, and why do I bother; don’t I get it? He is brain damaged. His feelings of uselessness pour out. They are harder to deal with, more than the fact that I can’t ever trust him to follow through and remember what he is supposed to do. More than the fact that I live in constant terror, despite the fact that he is 16, that he will smile at a friend across the street and walk in front of a car to greet him.
For 16 years I have worked endlessly to help him. First, I worked to help him with his global delays and multiple health problems during infancy. Then, despite multiple specialists labeling him with poor prognoses, we beat the odds and he learned. He first started in a special day class, and then transferred to a regular education class with resource specialist program (RSP) support A resource specialist program (RSP) provides services for students whose needs have been identified in an individualized educational program (IEP) developed by the individualized educational team. These students are in a regular educational program for most of their day, and can be serviced in multiple capacities based on the student's needs. Some children only need a RSP teacher to consult with the regular education teacher to develop an appropriate educational plan. This may include accommodations as simple as assisting a student with organization, note taking and study skills, or they may require modifications in the amount of work in a certain subject. A resource specialist also can service a child or group of children in class, or in pull-out instruction. As the student enters high school, a RSP instructor can also be an integral resource and assistant in helping a parent coordinate academic achievement, proficiency skills, pre-vocational and vocational development as their exceptional child transitions into an adult., speech and occupational therapy, and the assistance of a one-on-one aide.
He has learned, but the frustration is how many times he has to relearn. It is frustrating that he cannot connect the dots between lessons in life and how they apply from one situation to the next. It is frustrating that he can master things but then lose what he learns. It is frustrating that no one out there can understand that it isn’t his fault. They feel if he tries harder he can overcome his difficulties. It is frustrating to me because I want to believe he can overcome, and I don’t know what his future will hold. My frustration is manageable, but his frustration is tragic. He asks me if there is a magic pill to cure him, a vaccine, or a brain transplant that will allow him to be normal.
People often try to rationalize to me that it isn’t as if he was mentally retarded. I tell them that would have been a mercy. Then, he would have been left unaware, unaware of what he could have been. He mourns. He mourns like there was a death in the family, the death of the person he was meant to be. It breaks my heart. I tell him it’s not his fault, and I believe in him. At times, I may even yell right back at him that he isn’t allowed to give up on himself. If he lets me, I hug him. Then, I harden myself; there isn’t any room for enabling. I pretend the outburst didn’t happen; I sit down and point to the book. It’s time to teach him how to do his homework.
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Telling the Stories, Interpreting their Meaning
Have you ever heard anyone say, “Do you believe in fetal alcohol syndrome?” If you have, did you think that odd? I have and did. As a physician I have never heard anyone ever ask, “Do you believe in viruses?” or, “Do you believe in cancer?” We may disagree about how to manage diseases caused by these things, but we do generally agree that they are the causes of infirmity. Yet, there does seem to be resistance to embracing, as a medical disorder, conditions that have a largely behavioral component requiring interventions that are educational, psychological and environmental. This overt or covert resistance can be found in medical circles, the media and within government as well as the public at large because it reflects the more general span of public attitudes. How can this attitude be changed? We can hardly let people just believe what they would, because we see that it breeds indifference to a condition that causes so much pain and difficulty for those affected.
The field of Fetal Alcohol Spectrum Disorders (FASD) needs more experts in sociology and public relations, marketing and other fields that influence change. Yet even with those experts certain conditions or situations must be in place for change to occur.
Startling, unique or powerful individual stories attract attention. After all, FAS was observed and named because a small group of children in Seattle looked like each other, not like any other recognized pattern of malformation, and had all been exposed to alcohol in gestation. That is quite a tale. Some thought this observation profound, and the leap to etiology bold and brilliant, others thought that it was irresponsible. How could anyone be so reckless as to name a condition after an etiology when only most coincidental evidence was at hand? Correlation is no proof of causation between exposure and outcome. But without the story, no one would have thought to look for the evidence.
Now 40 years after those initial observations, we know that others had seen the condition before – this was not a new condition, just an unrecognized (and suppressed?) one – and we know that the leap was accurate. Ethyl alcohol is indeed a potent teratogenic agent. However, the mechanisms of ethanol’s action are not simple. Alcohol works through multiple complicated pathways to alter embryonic and fetal development so that no simple medical contravening act has yet been found that can reverse the damage or protect the fetus. Neither have we been able to develop a marker in humans that proves that ethanol exposure was the cause or primary contributor to the physical, behavioral, emotional and cognitive problems present in an individual born after an alcohol-exposed pregnancy. The doubters can still have their day. “Oh yes. Clearly alcohol damaged that baby rat and can hurt people too, but how do you know that alcohol caused Jimmy’s problems? I think that Jimmy is just a bad boy. Don’t you, really?”
We still need the stories. Now more than ever, the family tales of life with children exposed to alcohol and how those children evolve and grow into adults with persistent challenges are needed if science will tackle the endlessly complex and unfolding human tragedy that is FASD.
It seems to me that FASD has advanced so far because of the working relationship between families telling their stories to doctors in their offices, in research studies, and in print. The stories lead to research yielding data and that is the first one-two punch that is necessary to change attitudes and government policy. Stories grab our interest and may tweak our emotions, but data, synthesized information that can generalize the stories to a whole, are needed to then rationally convince most people that the stories are important to society.
Another one-two punch is needed as well. Professionals and families must lobby for governmental support together. Without the families, professionals might just look self-serving; without professionals, families may lack credibility in their specific requests. This approach (even if it has been largely unrecognized as such) has been used by the developing field of FASD and it has been successful even if change has been slower than we wish. Still it is the base from which greater achievements may grow.
The Iceberg was one of the very first vehicles that promoted these partnerships. Here was a forum for professionals and families, individuals with FAS, and others who just cared about the issues to tell their stories, summarize their scientific observations, and develop strategies for lobbying. Perhaps we did not recognize the power of this approach when the Iceberg was developing. Perhaps we did not promote the publication broadly enough. Whatever the reasons that the Iceberg’s time is over, the Iceberg’s approach is not. We need these collaborations now as much, if not more, than ever before. The metaphor for using the word iceberg as the title of the publication was because so many of the problems for those with the disorder were hidden. But the metaphor goes further, the iceberg goes deeper, into the hidden confusion, fear and resistance of a society to grapple with behaviors and adaptive difficulties as a disability and not as a disobedience, and to see the birth mothers of those children as patients themselves.
The Iceberg has contributed to the recognition of FASD’s reality and the improvements that have come, albeit slowly, in expanding clinical services, improving intervention supports and funding, increasing interest by schools and the judiciary and increasing research funding. For all readers of this publication we must find other venues for these collaborations and continue this work. This ice is melting a bit; this iceberg is floating a little higher. We need to turn up the heat.