The Loop - e-news
National Organisation for Fetal Alcohol Spectrum Disorders Australia.
[ Issue #24, August 2015 ]
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Dear Members & Supporters,
This month in “The Loop”
On the 9th of September, we recognise International FASD Awareness Day. The 9th day of the 9th month is a reminder of the 9 months of pregnancy, and the recommendation against consuming alcohol for those months.

In light of FASD Awareness Day, we encourage you to show your support by pledging to not consume alcohol on that day. Share a post on Facebook, Twitter or Instagram with the hashtag #FASDAwarenessDay, with a statement about why you aren’t drinking alcohol on 9/9. We want to see as many posts as possible in support of choosing no alcohol for unborn babies, as well as recognition of those who live with and know FASD on a daily basis.

During the month of September, we are also aiming to increase our supporter base by 500 people. We therefore ask you to share the NOFASD Australia newsletter with friends and family and have them to sign up to our community. NOFASD Australia relies on your membership of our network of supporters to help us make FASD a priority issue. By supporting us, you are endorsing us to give a voice to those individuals and families living with FASD, as well as ongoing training and education to those who work in related fields such as education, legal and medical professionals. What’s more, it’s absolutely free to join.

As always, Join us on Facebook and Twitter for consistent updates about the latest news and events, and please share the NOFASD Community newsletter with your family and friends.

Until next time,
Terri Baran
Social Media & Administration Officer

NOFASD Australia does not necessarily agree with the articles below. They are provided for interest purposes only.
 
From My Desk...
September 9 is International FASD Awareness Day.  This year we ask each of our current network supporters to recruit one other person to join NOFASD Australia and help us support individuals, parents and families by raising awareness of FASD across Australia.  Network supporters are the key to change and we invite you to actively participate.  Send this link to people on your personal or professional network and pass on the message of our Ambassador, Emeritus Professor John Boulton's statement about FASD , the condition "hidden in plain sight". 

The story of International FASD Awareness Day began with Bonnie Buxton, Brian Philcox and Teresa Kellerman (all parents of children living with FASD) who initiated and launched the event in 1999 in North America.  This was the same year NOFASD Australia was founded so I asked Sue Miers about the first International FASD Awareness Day in Australia and she recalled it was held in Adelaide in 2000 at St Francis Xavier's Cathedral.  "The bell was tolled at 9.09am and linked with international observance."

International FASD Awareness Day has a symbol, a symbol that sets apart those who advocate for individuals who struggle with FASD.  The FAS Knot has been used around the world to identify those who care and who are working for prevention and support individuals and families who live with FASD.  

The knot is made of white cord and is tied in a reef knot and symbolizes many things.  The circle symbolizes the womb, the baby's head, the human brain and the world.  The cord refers to the umbilical cord, and the cord that joins us all together in caring.  The reef knot cannot be broken or snapped, the more you pull, the tighter the bond.  The frayed ends represent the damaged nervous system which cannot be repaired. (Source)

We must always remember that the aim of the event is to provide support and information to parents, caregivers, and professionals dealing with Fetal Alcohol Spectrum Disorders (FASD), as well as individuals living with FASD.  It encourages the development of new programs for individuals with FASD and their families, women of childbearing age and their partners, and individuals struggling with alcohol and substance issues and aims to work locally, nationally and internationally, with other support groups, individuals and organisations, who indicate a common interest in some or all of these approaches to dealing with FASD and to communicate the message that there is no established safe threshold of alcohol.  It is also an opportunity to build public awareness of FASD, its secondary disabilities, the size and scope of this preventable disorder, and the personal and economic costs of FASD to our society. (Source)    

Another issue to think about:
Recently I had a thoughtful enquiry.  John (aged 9), who has a diagnosis of FASD, asked his parent, “Why am I different?” I have had similar questions from professionals, service providers and parents of adolescents and adults and it all comes down to the same question: How do I talk with my child about FASD?

A search on this topic results in a lot of information about how to talk with others (teachers, peers, relatives) about what FASD means for a child but very little information on talking directly with your own child.  I imagine there are many experiences and ideas you can share. I have started the ball rolling and have the websites I found listed at the bottom of this article:
  1. It is important that the person who has this conversation with the child has mastered their own feelings about FASD. FASD is not a tragedy and parent emotions do not need to dominate the conversation. This is about the child.
  2. FASD is not all your child is. Prepare. Think in advance about strengths and what your child is successful at. These might be small achievements in a world view but big accomplishments for the child (and you).
  3. Reflect the child’s language. For example, in John’s question he uses the word ‘different’ which tells us he has already worked out this part of his story. Ask more questions to understand what is it that makes John think he is different. Write the words down or draw pictures together.
  4. You might talk about the fact we all have brain difference. It is what makes us unique and we all need help. We all rely on others every day – bus driver, shop keeper, barista (have examples ready in pictures if necessary).
  5. Talk openly about the struggles that come with having learning or other difficulties. For example, being different sometimes makes learning harder but not impossible.1
  6. Also important is to keep expectations realistic but high, to provide encouragement and positive and constructive feedback, and to set goals that are attainable and can help their child experience and measure progress, even if this is only in small steps along the path to larger accomplishments.2
  7. Too much information at one time is just simply too much information.
  8. Give your child a name for the difference that makes some stuff harder and some stuff special.3
  9. Create a story of another child or draw a lifeline.
  10. If both parents have different ideas as to how the child should be told, work it out between you before you have any sort of talk.4
  11. Don't describe it as a tragedy to the child. For example, try not to use words like “I am sad that this happened to you” or “Your mother never meant to hurt you.”
  12. Since your child is living with this day in and day out, he or she likely knows what's hard and needs you to shine a light on the brighter side. At the same time, withholding information about who they are and how they learn means they will likely internalize it and feel badly about themselves.5
  13. Recognize that your child is more like his/ her peers than different.6
I look forward to hearing your ideas so we can build up a script to help other parents. Perhaps you have found other resources.

Vicki

Sources: 
  1. http://www.pbs.org/parents/education/learning-disabilities/supporting-your-child/talk-to-your-child/
  2. As above
  3. http://specialchildren.about.com/od/familyissues/ht/How-To-Talk-To-Your-Child-About-His-Or-Her-Special-Needs.htm
  4. As above
  5. http://www.empoweringparents.com/.../should-you-tell-your-child-about-their-disability-or-diagnosis/
  6. http://www.greenwichschools.org/.../How_to_talk_about_your_childs_disability_(1).pdf
Of Special Interest
International FASD Awareness Day
On the 9th day of the 9th month, we observe International FASD Awareness Day around the globe through various events. Perhaps consider hosting a morning tea at your place of work, a community barbeque, a “Pregnant Pause” (a flash-mob style public activity), or something as simple as joining NOFASD Australia’s social media pledge to not consume alcohol on this day as an acknowledgement of FASD. Let us know what you’re doing for FASD Awareness Day!
 
Join the Pledge!
Show your support by pledging to not consume alcohol on 9/9/2015. As some examples, you might post a status on Facebook, post a picture of yourself with a non-alcoholic beverage on Twitter, or share your photo from your FASD Awareness Day event on Instagram – whatever you like! You can make a statement like “I’m choosing to be alcohol-free on the 9th of the 9th because I know what FASD is.” Don’t forget to use the hashtag #FASDAwarenessDay

DATE: 8th – 9th September 2015
DETAILS: Narriabri CDAT in partnership with Perinatal MHPN are proud to be hosting the NOFASD (Fetal Alcohol Spectrum Disorder) Workshop with Vicki Russell as facilitator. To be held at the Narrabri RSL from 9.30am – 3.30pm.

International & Social Media
NOFAS US & NIAAA are hosting a Twitter chat with focus on FASD research on 9/9 1.00-2.00pm EDT (10/9, 3.00am AEST). Use the hashtag #NIAAAchat
National News and Media
Australians are drinking more alcohol than they were 15 years ago with teenagers drinking significantly more, according to a new study. Two academics at Sydney University’s Menzies Centre for Health Policy compared data from the Australian Bureau of Statistics national health studies between 2001 and 2012. Their assessments, published in the Medical Journal of Australia, found the weighted daily average alcohol intake had increased by 13 per cent from 3.9 standard drinks to 4.3.

A mobile community justice centre has been proposed as an urgently needed circuit breaker to help address Foetal Alcohol Spectrum Disorder related problems in the Kimberley. As part of a 17-month research project into FASD ... a team from the University of Western Australia’s Law School suggest a new circuit court to address the causes of offending. The UWA Law School’s Tamara Tulich told delegates about a research project to develop diversionary pathways from the judicial system for indigenous young people with FASD.

Children born with foetal alcohol spectrum disorders are more likely to end up on the wrong side of the law, according to the West Australian government. Acting WA Corrective Services Minister Liza Harvey on Thursday (13 August 2015) announced a $195,000 grant to fund research into the life-long disorder at the University of Western Australia.

The complexities for public health messaging around women drinking during pregnancy have been highlighted by new research undertaken at the University of Canberra’s News and Media Research Centre. The study found that women are receiving, and actively interpreting, contradictory information about the risks of drinking alcohol while pregnant from a number of sources.

Pregnant women have been told a zero-tolerance approach to drinking alcohol is the safest option, as a new report highlights the inconsistencies in the information provided to expectant mothers. The study by the University of Canberra (UC) and funded by the Foundation for Alcohol Research and Education (FARE) found there was confusion about the risks of drinking alcohol during pregnancy.

Foetal Alcohol Spectrum Disorder is far more prevalent in Western Australia than the public is aware and is often mistakenly labelled as other conditions like ADHD, a leading researcher says. In Western Australia some research has been undertaken to investigate the prevalence of FASD in remote communities like the Fitzroy Valley in the Kimberley, where one in eight children are believed to be living with the disorder. However, there is very little data on how it affects the wider community.

Australians are spending more on alcohol than personal care or education, with many struggling financially as a result. New research into Australian spending habits shows households that spend more on alcohol were more likely to report experiencing financial hardship, such as being unable to pay bills on time or going without meals.

A South Island couple who foster two daughters with possible foetal alcohol syndrome disorder [sic] (FASD) fear one of them could end up in court because they do not get adequate support. The couple, who did not wish to be named, told Nine to Noon their daughters did not have access to specialists in the South Island. They said the family could go to the North Island for help, but that would cost thousands of dollars.
Resources
This webinar focuses on issues associated with employment for people living with Fetal Alcohol Spectrum Disorder (FASD). It informs participants about: FASD and how it affects youth and adults; 'Tuning in' to FASD and reframing behaviours; What helps people with FASD on the job – promising practices and approaches; and applying promising practices in your work setting.

Fetal alcohol spectrum disorder (FASD) is a common but under recognised diagnosis in our community that contributes to a multitude of poor long term outcomes including adverse mental health, drug and alcohol abuse, crime and gaol. There is an estimated 462,000 to 1.15 million Australians affected. In this presentation, Dr Shelton gives an overview of the prevalence, epidemiology and diagnosis of FASD as well as options for prevention and harm minimisation.

The Final Score: Winning Against FAS is about the prevention of Fetal Alcohol Syndrome suitable for viewing by individuals 11 years to adult.

Susan Carlson discusses the damage from alcohol appears greater than damage from cocaine on preborn babies.

The FASD Competency-based Curriculum Development Guide for Medical and Allied Health Education and Practice is designed to improve prevention, identification, and management of FASDs and can be used to develop educational programs and materials in a range of formats based on the needs of learners.

This webinar examines the role of the social worker in the prevention, identification and treatment of Fetal Alcohol Spectrum Disorders. The webinar offers a discussion on how the social worker can utilize alcohol screening and brief intervention with their female clients to prevent them from having an alcohol-exposed pregnancy. This webinar provides what we currently know in how to identify clients who may present with symptoms of having a potential FASD. Dr. Tenkku Lepper discusses what is currently available for helping the social worker in treatment programs for those who are diagnosed with having a diagnosis of any of the conditions along the spectrum of disorders. It outlines the primary roles for the social work at both the micro and macro levels.

Strengthening Your Family: An Empowering and Inspiring Webinar Series
This webinar series is designed to help foster and adoptive families learn valuable skills to build strong families. In conjunction with Jockey Being Family, Jockey International, the Center for Adoption Support and Education (CASE) is pleased to offer limited free access to this webinar series.

This book discusses and provides insight on the legal and ethical dilemmas of managing those with Fetal Alcohol Spectrum Disorder (FASD). This book provides a clear perspective for those clinicians and legal professionals who are working with those with this disorder, and correspondingly increases their understanding when arranging effective supports for this population. Historically, the primary focus on FASD has been on children. However, this is a lifelong disorder and the implications of this disorder become even more prominent and complex in adulthood. Their cognitive difficulties result in challenges for legal systems around the world to understand their issues, and to design appropriate remedial strategies, recommendations for treatments and supports, and even for understanding the failure of many of these individuals to be able to change their behaviours effectively. This produces various legal and ethical dilemmas, which are discussed in detail in this volume by 28 authors from Europe, New Zealand and North America.

Featuring expert Dr. Raja Mukherjee as well as several families.

August is National Breastfeeding Awareness Month. Ask the Expert marks this occasion by interviewing Dr. Erin E. Tracy, a full time faculty member in the Vincent Obstetrics and Gynecology Department at the Massachusetts General Hospital and an Assistant Professor in Obstetrics, Gynecology, and Reproductive Biology at Harvard Medical School. Dr. Tracy discusses the value of breastfeeding, and special considerations for mothers who consume alcohol and want to breastfeed their children.

Vignettes that have been created to help medical home providers learn the signs of Fetal Alcohol Syndrome Disorders (FASDs) and develop individualized care plans for children with an FASD. A suggested script is also provided to assist with addressing families of a child diagnosed with an FASD.
International News and Media
People affected by FASD (Fetal Alcohol Spectrum Disorders) are often stigmatized, including individuals living with FASD and their family members and caregivers. One group that faces overwhelming stigma, even within the FASD community, is birth mothers of children with FASD. The stigma and fear of judgment is one of the reasons that women will not disclose to healthcare providers or others that they drank during their pregnancy. The stigma can sometimes prevent physicians from asking women about their alcohol use.

New research from Drinkaware reveals that most new and expectant mums have stricter views on drinking in pregnancy than the current Government guidelines. Almost 9 in 10 (88%) mums told [Drinkaware] that they don't approve of drinking during pregnancy at all, or only approve of the occasional sip or on special occasions. Only 20% of those asked could correctly identify the current guidance and eight in 10 think it's stricter than it is.

There was a huge need to prioritise helping women to understand and prevent Foetal Alcohol Spectrum Disorder (FASD), the African Christian Democratic Party (ACDP) said on Tuesday. Cheryllyn Dudley, ACDP Whip and MP, said during the National Women's Day debate in Parliament that this was unacceptable and a cause for concern. "This disorder with its far reaching effects is entirely in the hands of women themselves but the existing impact on children and society is in all of our hands," she said.

Strides are being made in the approach to fetal alcohol spectrum disorder, but there's still a long way to go on prevention and ensuring those affected get the support the needed. "We're finally starting to see some action in the province of Ontario, looking at creating an integrated strategy," said Mary Mueller, a nurse at Region of Waterloo Public Health and member [of] a regional action group on fetal alcohol spectrum disorder.

Although there have been thousands of published articles in FASD in general, there has been limited research specifically on adolescents and adults with FASD or on individuals across the lifespan. As those individuals diagnosed with FASD continue to age, the "need to know" across a broad spectrum of areas is becoming critically important for identifying clinically relevant research questions and directions.
This interactive 2016 conference will provide an opportunity to be at the forefront of addressing these issues. We will leverage the experience of the diverse group of professionals, researchers, students, families and individuals with FASD who attend to stimulate the discussion of research, evidence for practice, models, and ideas to expand our knowledge of how we can sustain and enhance the lives of those with FASD.

Release of the FASD 2015 Pre-conference Proceedings Summary
Research: Results and Relevance 2015. The purpose of this pre-conference session was to create a dialogue among an international group of researchers, practitioners, policy makers, service providers and others working or living with individuals with FASD to collaboratively explore FASD research needs in five specific topic areas.
Latest Research
Lynch ME., Kable JA., and Coles CD., Neurotoxicity and Teratology, 4 August 2015, doi: 10.1016/j.ntt.2015.07.008
Although many studies have demonstrated effects of prenatal alcohol exposure (PAE) on physical, cognitive, and behavioural development in children, few have focused on the long term effects on adults. In this study, data are presenting on adaptive function and entry into adult roles in a community sample of young adults with PAE. The expectation was that prenatally exposed adults would show lower adaptive functioning and more difficulty with entry into adult roles than the non-exposed control group and that these effects would be related to the severity of PAE effects. Results showed that adults who were dysmorphic and/or cognitively affected by PAE had difficulty with adaptive function and entry into adult roles. Males showing cognitive effects with no physical effects were the most severely affected. Results for exposed adults not showing physical or cognitive effects were similar to or more positive than those of the control group for most outcomes.

The Use of Open- and Closed-Loop Control During Goal Directed Force Responses by Children with Heavy Prenatal Alcohol Exposure
Simmons RW., Nguyen TT., Thomas JD., and Riley EP., Alcoholism: Clinical and Experimental Research, 6 August 2015, doi: 10.1111/acer.12827
Many daily functional activities involve goal-directed responses based on open-loop and closed-loop motor control, yet little is known about how children with heavy prenatal exposure organize and regulate these 2 types of control systems when completing a goal-directed force response. The results from this study indicate that alcohol-exposed children experience deficits in completing goal-directed force responses that likely stem from an alcohol-related insult to the central nervous system. Therapeutic exercises should be designed to recalibrate internal timing systems and improve visuomotor integration.

Infante MA., Moore EM., Bischoff-Grethe A., Migliorini R., Mattson SN., and Riley EP., Brain Research, 12 August 2015, doi: 10.1016/j.brainres.2015.08.002
Prenatal alcohol exposure can adversely affect brain development, although little is known about the effects of prenatal alcohol exposure on gyrification (the formation of the folds of the brain). Prior studies have shown that prenatal alcohol exposure is associated with reduced gyrification in childhood, but no studies have examined adolescents. The results of the study showed that, relative to controls, adolescents with FASD showed regions of reduced gyrification, as well as regional age-related reductions in gyrification, suggesting altered brain development following prenatal alcohol exposure.

Reis KP., Heimfarth L., Pierozan P., Ferreira F., Loureiro SO., Fernandes CG., Carvalho RV., and Pessoa-Pureur R., Alcohol, 5 August 2015, doi: 10.1016/j.alcohol.2015.06.005
Ethanol exposure to offspring during pregnancy and lactation leads to developmental disorders, including central nervous system dysfunction. In the present work, [the researchers] have studied the effect of chronic ethanol exposure during pregnancy and lactation on the phosphorylating system associated with astrocytic and neuronal intermediate filament proteins, glial fibrillary acidic protein, and neurofilament subunits of low, medium, and high molecular weight in 9- and 21-day-old pups. Disruption of the cytoskeletal homeostasis in neural cells supports the view the regions of the brain are differentially vulnerable to alcohol insult during pregnancy and lactation.

Skorput AGJ., Gupta VP., Yeh PWL., and Yeh HH., The Journal of Neuroscience, 5 August 2015, doi: 10.1523/JNEUROSCI.1462-15.2015
Gestational exposure to ethanol has been reported to alter the disposition of tangentially migrating GABAergic cortical interneurons, but much remains to be elucidated. First, it is demonstrated that a time-delimited binge-type ethanol exposure in utero during early gestation alters corticopetal tangential migration of GABAergic interneurons in the fetal brain. Next, it integrates neuroanatomical, electrophysiological, and behavioural evidence that this “interneuronopathy" persists in the young adult offspring and contributes to enduring changes in the prefrontal cortex, behavioural flexibility and inhibitory/excitatory synaptic imbalance. These findings alert women of child-bearing age that fetal alcohol spectrum disorders can be rooted very early in fetal brain development, and reinforce evidence-based counselling against binge drinking even at the earliest stages of pregnancy.
Upcoming Events
Remember to visit our events page on our website for a full listing of upcoming events.

DATE: 8th – 9th September 2015
DETAILS: Narriabri CDAT in partnership with Perinatal MHPN are proud to be hosting the NOFASD (Fetal Alcohol Spectrum Disorder) Workshop with Vicki Russell as facilitator. To be held at the Narrabri RSL from 9.30am – 3.30pm.

DATE: 10th September 2015
DETAILS: 9am – 3.30pm. Morning tea and lunch provided. The FASD Centre, 2nd Floor, YES Disabiilty, 3 William Laurie Place, Albany. Free for FASD-CAN Members, $35 for non-members.
A one-day parent/caregiver workshop, the purpose of the workshop is: to bring parents and caregivers together; to learn about latest FASD evidence; to brainstorm strategies that can be applied at home and in the community; to explore parent/caregiver self-care strategies; and to share and learn from personal experience.

Seminars with Dr Carolyn Blackburn, PhD – Auckland and Hamilton, New Zealand
DATE: 16th - 17th September 2015
DETAILS:
Auckland Seminar – Wednesday 16 September 4-6pm at the Cole Lecture Theatre, Waipuna Hotel, 58 Waipuna Road, Mt Wellington
Hamilton Seminar - Thursday 17 September 2015, 10.30-12noon at Wintec House, Bill Gallagher Events Room One, Nisbert Street off Tristram Street, Hamilton.
Leading international FASD expert and researcher from Birmingham City, United Kingdom, Dr Carolyn Blackburn is Research Fellow in the Faculty of Health, Education and Life Sciences at Birmingham City University. Dr Blackburn has worked in education in a range of roles that include Leadership of an early childhood education setting and family support in an early intervention project. She has worked in research for over 10 years in a range of projects that have involved children with FASD and complex learning difficulties and disabilities, and is lead author of the first British text on FASD as well as a co-editor on the first interdisciplinary international publication on the subject.

APSAD Annual Scientific Alcohol and Drug Conference 2015 – Perth, Western Australia
DATE: 8th - 11th November 2015
DETAILS: This year's conference will be in collaboration with WA Drug and Alcohol Office, who bring a strong track record of attracting speakers and participants from across the alcohol and other drugs sector to conferences, together with APSAD's record of presenting the cutting edge research evidence and delivering engaging local and international presenters. This year’s conference will address a diverse range of issues including co-existing mental health and drug problems, aetiology, policy innovations, emerging psychoactive substances, responding to First Peoples' needs and addressing drug related harms.

Research on Adolescents and Adults: If Not Now, When? The 7th National Biennial Conference on Adolescents with Fetal Alcohol Spectrum Disorder (FASD) - Vancouver, Canada  
DATE: 6th - 9th April 2016
DETAILS: The Hyatt Regency, Vancouver
This interactive 2016 conference will provide an opportunity to be at the forefront of addressing these issues. We will leverage the experience of the diverse group of professionals, researchers, students, families and individuals with FASD who attend to stimulate the discussion of research, evidence for practice, models, and ideas to expand our knowledge of how we can sustain and enhance the lives of those with FASD.
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