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PAPERBACK BOOKS

ALCOHOL AND PREGNANCY

 MY RESPONSIBLE DISTURBANCE

SECOND EDITION



alcohol and pregnancy second edition cover

Elizabeth [Anne] Russell is the biological mother of two adult children with Fetal Alcohol Spectrum Disorder.   In this book, Anne talks about the experiences she drank to forget: her young life in a dysfunctional and abusive family environment and her experiences as a teenager while travelling the world. She takes readers through the experience of being a functional alcoholic and the travails of new sobriety.  She describes her first encounter with Don, her partner of almost 45 years, and the challenging birth and childhood of her boys, Mick and Seth. 

When medical practitioners in Australia would not discuss FASD as a possibility for their behaviour and illnesses, even with confirmed prenatal alcohol exposure, she took matters into her own hands.  If there were no experts on FASD in Australia at the time, she would find them in other locations. Eventually, at a conference, she met one of the world’s experts in FASD who delivered the transformative diagnoses that gave rise to the Russell Family Fetal Alcohol Disorders Association.  Anne is currently Australia’s leading parent advocate, having worked for almost 20 years supporting caregivers, and raising awareness of this condition and the impact it has on family.  As Australians became more aware of FASD as an issue to be understood and dealt with, she became a sought-after presenter nationally and internationally. 

If you have a child with behavioural or learning difficulties, please read this book before seeking a diagnosis.   

In Store Price: $32.95 
Online Price:   $31.95

 

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EBOOKS
Ebook version - $AUD9.00 upload.

 

ISBN: 978-1-922229-87-8
Format: Paperback
Number of pages: 403
Genre: Non Fiction

Cover: Clive Dalkins

By the same author

Alcohol and Pregnancy: A Mother’s Responsible Disturbance

Alcohol and Pregnancy: No Blame – No Shame!

Strategies for Employment Services Specialists


Author
-
Elizabeth (Anne) Russell
Publisher: Zeus Publications
Date Published:  2018
Language: English


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Preamble

What disability results in sufferers being good at small talk but without substance; a kind heart but a violent temper; complex needs but no insight; a small frame with big expectations and perhaps saddest of all, a damaged mind with a beautiful face?

 

 Anne Russell 2005

Alcohol and Pregnancy – A Mother’s Responsible Disturbance – First Edition

The sentence above was published in my first book, Alcohol and Pregnancy – A Mother’s Responsible Disturbance. Since then it has worked its way around the world and back to me with a comment from a man living with FASD. He was offended anyone would say that he ‘suffered’ from FASD – he didn’t. He managed his condition without suffering. I am grateful for his comment as it offers a positive perspective on a condition that is often viewed as quite negative.   

I acknowledged that the word ‘suffering’ may not have been the right word for him, but it is the right word for my son and it is the right word for many people with FASD. Those living in remote areas, individuals without a diagnosis – unrecognised and unsupported – trying to manage their lives alone until they can no longer endure the consequences. 

I would be the happiest person on the planet if nobody suffered from FASD but that, unfortunately, is a pipe dream. 

It’s a diverse condition with a wide spectrum of effects ranging from the incredibly complex to the almost wholly functional. For those families with the more challenging effects, it’s not just the complexity of a person’s needs over his or her lifespan, it’s also the sheer frustration that they experience when their child is refused FASD-informed support services and enlightened diagnosis and planning. 

While some organisations are keen to train staff on FASD so they can better support clients with the symptoms of FASD, others don’t seem to understand that children who look neuro-typical can have a disability. There are far more people with FASD than most can imagine. They are struggling with inappropriate diagnosis, unsuitable medication, harmful therapies and misleading and hurtful comments. 

Few medical professionals seem to know what to do with a child, adolescent or adult with FASD other than diagnose them with ADHD and put them on Ritalin. I’ve actually seen eyes roll when I have tried to talk about FASD in relation to my own family. I’ve been stressed and depressed from years of rejection for services and ignorance, and so have become tearful. In the world of FASD in Australia, tears do not seem to evoke compassion. To many, they are a clear indicator that the mother herself has the problem, not her child who can look and behave as though completely neuro-typical for short periods – perhaps even the length of time it takes for a doctor’s consultation. Those children who show clear signs of hyperactivity are diagnosed with ADHD on the spot. 

Families live with FASD and love their affected children. We suffer when the teacher tells us that our child is lying and stealing even though she has been told that it is a symptom of FASD and it is not an indictment of the child or his parents. To those who do understand, it is called confabulation and misinterpreting ownership, not lying and stealing, and its source is brain-based, not values-based. 

This is when parents suffer. We suffer when the teacher wants us to do something about it otherwise our son will be in detention every day for the next month. We know that reward and punishment don’t work but others believe that if they punish the child enough, eventually something will stick. What sticks is anxiety and depression which can lead to self-medication and a lifetime of addiction and pain. 

We know that our children try so hard to please so we all suffer when we see that their anxiety has outweighed their desire to persevere. This cycle continues until the child has been inculcated with the certainty that she is worthless, inconsequential and stupid. This is usually achieved without malice, but the lifetime consequences are the same. 

Children with FASD leave school early to get away from the pain. They try to get work and because they are so good at talking, they do. But it’s a hard lesson when they find that nothing has changed. The environment is different but the experiences are the same. Their mental health suffers and strengthens their addictions. Parents know something is wrong, and doctors discuss parenting classes. Nothing seems to work, timeout has no effect, and pleading just encourages more meltdowns. As they get older, they become known to the police and eventually they do something that can’t be ignored. 

Whether or not ‘suffering’ is the right word, FASD can have far-reaching consequences for the individual, the family, and everyone with whom he or she is likely to come into contact.

Foreword 2nd edition – Dr Doug Shelton

DR DOUG SHELTON, MBBS DIP PAED FRACP CLINICAL DIRECTOR, COMMUNITY CHILD HEALTH SERVICE LINE DIRECTOR, CHILDREN’S SERVICES, SPECIALTY AND PROCEDURAL SERVICES, GOLD COAST HOSPITAL HEALTH SENIOR LECTURER, GRIFFITH UNIVERSITY COMMUNITY CHILD HEALTH

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%-7%], 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% to 28% depending on the jurisdiction. The annual cost of a child with FASD in out-of-home care in Canada is up to $2,000,000 Canadian 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 Australia. 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 16. 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.  

 

In this book, Mick and Seth have agreed with and approved all references with respect to their experiences, their activities and their lives. From the very beginning of our journey with FASD they were willing to stand up and be counted about the effect it had on them.

 

I admit my objective has always been to reach the broadest audience possible given the critical nature of this information. The more we talk about alcohol and pregnancy, the more likely we are to be successful in reducing the high number of babies born daily with a diagnosable injury from prenatal exposure to alcohol. In Australia, that number stands at a very conservative 40.

 

Without permission from Mick and Seth, this book, like many medical and health-related journal articles, could have been clinical and dispassionate. But instead, I have been told, it is powerful and evocative.

 

In addition, it is important for people to understand that there are such vast variations in effects that it is impossible to predict the level of injury. The contrast between Seth’s and Mick’s life stories highlight this point well. What we can say is that if we know one child with FASD we know one child with FASD.

Those of us who understand FASD are passionate about helping to increase the knowledge base of Australian parents and parents-to-be and especially keen to ensure that any information disseminated is accurate and consistent. Training is critical. However, training without a parent, caregiver or person with FASD as facilitator or co-facilitator can result in participants having an incomplete or one-dimensional understanding of FASD.

 

I believe that every research project, every study group, survey, panel, board, and diagnostic clinic must have at least one parent, caregiver or individual with FASD representing the perspective of the consumer.

 

 

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