photography by Belinda Mason
FASD Facilitator – Training Connections Australia
Families don’t suffer from fetal alcohol spectrum disorder (FASD); we live with FASD and we love our affected children. We suffer when we are harassed and stigmatised when we try to get help. Our children suffer when they are ignored by services and denied diagnosis and support. They also suffer terribly in school where our education system is not able to appropriately support students with FASD. Would a child with Autism be punished for fidgeting during class? Of course not, yet children with FASD are even though it helps them concentrate. Every day, they are punished because they don’t understand the question, they are not given time to answer, there are too many distractions in the classroom and their anxiety about getting it wrong outweighs their desire to try. They look like every other student in the class and like everyone else, their behaviour seems to be within their control. So when they appear to be disobedient and destructive – they are punished. Because they have difficulty understanding cause and effect, when they are disciplined they have no idea why so they can’t change their behaviour. The cycle continues until the child has been inculcated with the certainty that he is worthless, inconsequential and stupid. This is usually achieved without malice but the lifetime consequences to the child and the family remain the same.
The child comes home distressed because, to him, he has tried so hard during the day. It takes enormous effort to sit still during the lessons each day and to try to understand and imitate proper social behaviour during breaks. If he cannot meet the expectations he has a ‘meltdown’ and this becomes a daily event. He comes home and has a meltdown of sheer exhaustion falling on the floor and screaming. Because his date from birth is 13 years, his parents tell him he is being silly and must act his age but his brain has just reached that of a 5 year old. The thirteen year old going on five is punished. His heart is gradually being squeezed harder and harder until he stops fighting his immature and not yet empowered brain. Drugs and alcohol stop the pain of depression and anxiety. He decides he will play the clown at school, because if the other children laugh at him then at least he will understand their laughter and he has found a place in which he fits and can tolerate.
The adolescent child suffers the demeaning space created around by his teachers and parents for as long as he can stand it. He leaves school and gets a job but the same experiences follow him, over and over again. Mental health issues are a constant and addictive substances soothe while strengthening his reliance on them. He has suffered numerous trips to paediatricians and doctors by a mother who knows intuitively there is something wrong but cannot find the elusive answer. Doctors suggest parenting classes. Nothing seems to work, even punishment doesn’t make any difference. As he gets older, he becomes known to the police and eventually does something they can’t dismiss so he goes to prison. His despairing parents wonder how it has come to this. He was always a difficult child but with the family morals and values they tried to instill in him, prison was never expected for their much loved child.
Anne Russell has endeared herself to thousands, possibly millions, of individuals and families across Australia and internationally where people live with fetal alcohol spectrum disorders in their lives. Her unrelenting love for her son, and for the children of others with this common but not acknowledged affliction, has steered Anne’s pathway into a vast network of parents, carers, health professionals, legal representatives, educators, health and criminology researchers, tardy policy makers and literary agents to publish her works whiles she maintains a website and social media resources. Four books now completed, Anne forges ahead detailing and sharing stakeholder best practices with cutting edge research. It can best be described as a veritable whirlwind sweeping and creeping through barely opened doorways of the nation’s legislative chambers. What does it take to crack into the halls of power zealously guarding and protecting the generous philanthropy of the alcohol industry? What price for a baby’s brain damaged by parental alcohol before birth?
In the foreword to Anne’s first book “Alcohol and Pregnancy – My Responsible Disturbance”, longtime champion for children with FASD, Dr John Whitehall, Professor of Paediatrics and Child Health at the University of Western Sydney School of Medicine, expressed his support and caring for Anne.
I read this book in one sitting, some of it out loud to my wife, perhaps seeking company in its sorrow. It is the story of the pain of addiction, of trying to raise deeply troubled children, of trying to find help and, finally, of trying to warn an ignorant and even uninterested world. At the beginning, I felt I was being drawn down into an experience of human suffering that doctors are supposed to get used to, but would leave me burdened. Its thoughts certainly remained in my mind, but it took a day to realise that I was not depressed, rather, inspired!
This is an inspiring book. I was inspired by the display of a mother’s unquenchable love. I was inspired by a revelation of honesty for which I know few peers. I was inspired by a commitment to refuse to succumb to defeat, but to struggle in the other direction, though the way was obscure.
It is a mother’s story, but in the background is a father and a husband, whose silhouette causes you to wonder: from what source does he find such constancy, such patience, such enduring love?
To be sure, the book is a story of a human weakness − alcoholism − but the lasting message is of strength.
It is not only Elizabeth and her family who need that strength; our society needs it to confront the damage that is being done to those waiting to be born. Alcohol consumption is increasing in young women, as the voices of constraint are subsumed by the glitz of advertising and the unrelenting pressure of peers. What on earth should be done by those of us who know something of the effect of alcohol on the developing brain, be it fetal or adolescent?
The skills of neonatal intensive care are steadily increasing, reflecting the time, effort and money invested by government and professions. As a result, younger and sicker babies are surviving, but nothing can be done to restore the prenatal damage from alcohol and tobacco. Society goes to the greatest of lengths to ensure that the brains of sick babies are protected after birth, but does little to avoid the preventable damage of alcohol before birth. This is an anomaly.
It is also an abrogation of the promises we have made. Being signatory to the United Nations Convention on the Rights of the Child, our country promised it would undertake all ‘appropriate legislative, administrative and other’ measures to ensure the wellbeing of the child ‘before as well as after birth’. We are not that committed, and the potential of unborn generations is being stolen.
What can we do? We need to make legislative changes to reduce the access of young people to alcohol; we need to administer those laws, while increasing our programs of education. One contribution to education would be for people to read this book.
On a personal note, what can a neonatologist do? Frankly, I have always avoided declaring to a mother that her baby has apparently been damaged by things she did during the pregnancy. I have thought to spare her additional pain. Anne would have me wrong.
For the 2nd edition of book “Alcohol and Pregnancy – My Responsible Disturbance” another champion of individuals with FASD and set up Australia’s first accredited FASD Diagnostic Service, Medical and Clinical Director of the Gold Coast Child and Community Health Service, Director of Children’s Specialty and Procedural Services at the Gold Coast Hospital and Senior Lecturer at Griffith University, paediatrician Dr Doug Shelton wrote this Foreword:
FASD is permanent diffuse brain injury caused by prenatal exposure to alcohol. The underlying brain damage cannot be fixed. FASD is more analogous to cerebral palsy or stroke than it is to mental illness.
I am now firmly convinced that FASD is relatively common [2 percent−5 percent], mostly undiagnosed, and leads to terrible outcomes including suicide, early death, substance abuse, unemployment and incarceration. The prevalence of children in statutory care with FASD ranges from 6 percent to 28 percent depending on the jurisdiction. The annual cost of a child with FASD in out-of-home care in Canada is up to $CAD 200m in their lifetime with no rationale that the same costs would not be true in Australia.
Australia has minimal investment into FASD prevalence and diagnosis but no investment in treatment. Australia has no treatment programs for FASD. Thus, once diagnosed, we do not have anywhere to send these children for management or treatment and no local resources to offer. The only Australian resources are two national organisations, the unfunded Russell Family Fetal Alcohol Disorders Association and the minimally funded NOFASD. Both organisations are struggling to adequately support the huge number of parents and carers begging for advice, support, reassurance and understanding.
People with FASD have some of the worst outcomes of anyone in our community. Once diagnosed, parents/carers must have the skills to intervene and advocate for their child in the education system, the mental health system, the health system, the disability support system and probably the police, justice and corrections systems. Until there are appropriate interventions for children with FASD they will continue to have terrible outcomes, many of which can be prevented or ameliorated.
Intervention for children with FASD is a lifelong priority; the condition does not necessarily diminish when children reach adulthood. Parents and carers desperately need an Australian ‘How To’ guide that will map out a path forward and help them to plan a lifetime of intervention shifting the odds toward better outcomes. This book is that guide. Parents living with FASD reading this book will see similarities in their own situation through Anne’s and will be able to better advocate and support their own children by using strategies Anne has found helpful. If not Anne’s story then perhaps one of the other fourteen stories that are found in the latter half of the book. All will be helpful.
Anne Russell has a proven track record in advocacy and support for children with FASD and their families. Anne has accurately identified the complete absence of local intervention options and hopes to fill this gap by updating her successful first book with a second edition − Alcohol and Pregnancy: My Responsible Disturbance. The second edition is a combination of her first and second books and the culmination of living with FASD for 34 years and supporting other families for fifteen. I know it’s Anne’s goal to help people understand FASD through her own lived story and to raise awareness of FASD in Australia.
This is an exceptionally honest account of a family living with FASD, well written and informative. It is not only good reading but will provide parents with a variety of in situ strategies, accommodations and interventions along with examples of behaviour and situations which will resonate with anyone living with this condition.
At the 3rd International FASD Conference in Victoria, British Columbia, Canada, children with FASD presented flags to participating countries emblazoned with
“It’s Our Time. Go Tell the world”
Dr Jan Hammill, AM PhD MTH RN,
Dr Jan Hammill is the Indigenous Advisor for the Russell Family Fetal Alchol Disorders Foundation Dr Hammill also coordinates the Collaboration for Alcohol Related Developmental Disorders (CARDD), formerly the Fetal Alcohol Spectrum Disorders (FASD) Research Network, at the University of Queensland Centre for Clinical Research. An ethnographer, she weaves narratives of family history of health and wellbeing into a biological framework that better illustrates the epigenetic and developmental burden placed on families. Janet’s interests have evolved from nineteen years’ experience in population health research which includes a Doctor of Philosophy and Master of Tropical Health. Jan’s ancestry is shared between the Gomeroi people of the NSW Pilliga Scrub and the first convicts of the area.