rozumdim.com.uawww.rozumdim.com.uaprogressive.uaprogressive.ua

Welcome to rffada

The Russell Family Fetal Alcohol Disorders Association (rffada) is a national not-for-profit health promotion charity dedicated to prevention and ensuring that individuals affected prenatally by alcohol have access to diagnostic services, support and multidisciplinary management planning in Australia and that carers and parents are supported with a “no blame no shame” ethos.

On this site you will find a range of support resources and information relating to Fetal Alcohol Syndrome Disorder, or FASD.

The Russell Family Fetal Alcohol Disorders Association (rffada) Strategic Plan is based on four key priorities.

    1. Prevention
    2. Support
    3. Training and Education
    4. Research and Projects

Fetal Alcohol Spectrum Disorder

 

This video from founder, Anne Russell is a plea to Mr Turnbull to provide Australians with a national media campaign on FASD to raise awareness that no alcohol is safest for the unborn child. Please share. Too many people and organisations are suggesting that those who maintain that abstinence during pregnancy is the safest option are over reacting. That is the very reason we need to say more than alcohol and pregnancy don’t mix  --- we need to show people why.

 

.............................................................................................................

Fetal Alcohol Spectrum Disorder [FASD] impacts on education, mental health, drug and alcohol supports, offending, the criminal justice system and many other social supports.

FASD prevalence studies from overseas (we don’t have our own yet) seem to indicate that there are around 500,000 people in Australia who, if they were to be diagnosed, would be found to have FASD.  The education system is in a unique position where students with undiagnosed FASD will be taught throughout their childhood and adolescence.  Education system is of particular concern because of the propensity for children with FASD to develop secondary disabilities which are often worse than the primary injury to the brain.

It will be difficult for teachers to manage students with the physical brain injury that is FASD without understanding that the sensory processing, mental illness, learning disabilities, speech problems and behaviour are not within the control of the student.  It would be much easier for both teacher and student if the teachers were trained in the identification and interventions required for people with FASD.  Evidence based teaching specifically developed for neuro-typical students will leave children with FASD behind and create more behavioural issues in the classroom.  Because students with FASD whether diagnosed or not do not have neuro-typical brains, they require a different teaching approach.  This approach will not ‘hurt’ children without FASD but will make a big difference to the learning and behaviour of children with this condition.

Particularly in Australia, because FASD is not often diagnosed, people with FASD will develop secondary disabilities through frustration and disappointments secondary to the primary disability, the brain injury.  This typically occurs during young adolescence.  Children with FASD are expected to manage school life (social and academic) in the way that a neuro-typical student might, and is likely to continually ‘fail’.  They will be the students who are in the Principal’s office over and over again and seem not to learn from their mistakes.  Secondary disabilities such as mental health problems, substance abuse, trouble with the police, expulsion or suspension, leaving school early and other issues can be prevented or alleviated if the people around the student with FASD understands that he or she has a physical brain based condition.   They are likely to be referred for a diagnosis of ADHD, Autism or Asperger’s. These conditions are often misdiagnosed instead of FASD or they are co-morbid with FASD.

For example, children with FASD may have the following history:

  • Learning  problems at school
  • Significant behavioural problems
  • Have been diagnosed with ADHD, ADD, ODD, RAD, or other ’alphabet soup’ type      diagnoses
  • Suspended or expelled from school
  • Not doing well academically even though they seem quite intelligent
  • Can talk very well
  • Using drugs and |or alcohol
  • Agree with you or nod they understand but you get the feeling its only because they want to get out of your office not because they really understand
  • Have been in trouble with the police
  • May have a history of inappropriate sexual behaviour
  • Suicide ideation
  • Don’t do their homework
  • Truancy regularly
  • Can be angry and violent
  • Have depression |anxiety but are also very difficult to diagnose because they      can be observed to be depressed and suicidal one day yet seem happy the      next or vice versa
  • When one thing goes wrong “everything is wrong”
  • They may exhibit immature behaviour when they are stressed or under pressure
  • Have a dysfunctional family environment where mum and dad both use drugs or      alcohol (this is not necessarily the case with children with FASD because      the majority of mothers with children with FASD will be social drinkers)
  •  

    While this information is specific to teachers, children with FASD grow up and will often cycle around services.  Because of the issues which developed in their childhood and teenage years, they are likely to have the following problems:

    1.         Mental illness
    2.         Drug or alcohol use or abuse
    3.         Relationship problems
    4.         Unstable accommodation
    5.         You will see them over and over
    6.         They are likely to be in crisis much of the time
    7.         They may not attend appointments
    8.         Have been in trouble with the police
    9.         They did not finish school
    10.      They may not be living with their family of origin

    For more information about FASD or to discuss training options please contact Anne on 0412 550 540 or at This email address is being protected from spambots. You need JavaScript enabled to view it. .

    ..............................................................................................................

    Do you live in Kalgoorlie and have an interest in being part of a FASD support group?

    Face to face FASD support groups are springing up all over Australia.  Kalgoorlie residents who have children with FASD would like to establish a group but they need more interested people.  If you would like to be part of a support group for families living with FASD in Kalgoorlie please contact the Office of Wendy Duncan MLA, Member for Kalgoorlie and Deputy Speaker for the Legislative Assembly on 90216766 or visit at 305 Hannan Street Kalgoorlie.  You can also email This email address is being protected from spambots. You need JavaScript enabled to view it. or Freecall 1800 199 728.

     

    ..................................................................................................................

    Research on the fathers' use of drugs and alcohol at conception on fetal outcomes

     

    This is information provided to me by Canadian PhD student Ben Laufer who has been working on epigenetics and the severity of FASD

     

    1) http://www.tandfonline.com/doi/abs/10.1080/19768354.2013.865675

    2) http://www.ncbi.nlm.nih.gov/pubmed/15223537

    3) http://journal.frontiersin.org/article/10.3389/fgene.2014.00154/full

     

    These are also worth reading and the dots can start to be connected:

    1) http://www.the-scientist.com/?articles.view/articleNo/44696/title/Obesity-Alters-Sperm-Epigenome/

    2) http://epigenie.com/sperm-mirna-drives-intergenerational-stress-response/

    3) http://epigenie.com/more-insights-into-sperm-epigenomics-histone-methylation-takes-it-solo-transgenerationally/

     

    ....................................................................................................................

    FASD in the News

     

    https://www.facebook.com/abc4corners/videos/10153262227525954/

    https://www.facebook.com/abc4corners/videos/10153262230860954/

    https://www.facebook.com/abc4corneers/videos/10153260754665954/

    http://www.abc.net.au/news/2015-11-02/mothers-in-anguish-over-childrens-foetal-alcohol-disorders/6900562

    .............................................................................................................

    FASD Screening Tool

     

    The rffada has prepared an informal non-medical screening tool to identify people with FASD.  The questions in this tool are based on my research both personal and academic into the condition over the last 15 years as well as my experience as the mother of two children with FASD.  The material in this form offers information only and is not evidence-based. Only a doctor can give medical advice and | or make a diagnosis.  FASD can vary in severity and affect those with the disorder throughout their lives. Some people may have just one or two problems; others may have many. The types of problems experienced by people with FASD can also change as they become older.  A positive response to all these questions still may not mean FASD as there are other conditions which also have these same signs, symptoms and history however if it looks and sounds like FASD treat it like FASD and use FASD-friendly interventions and strategies.

    pdfFASD_Screening_Tool__-_over_18.pdf779.93 KB

    pdfFASD_Screening_Tool__-_under_18.pdf702.01 KB

     .....................................................................................................................

    Objectives of the rffada

    What our government MUST do immediately to assist parents and carers give their children with FASD the best possible opportunity in life

    • Prepare and televise a national education campaign developed in consultation with parents and carers of children with FASD 
    • Acknowledge FASD as a disability 
    • Research mainstream prevalence and incidence rates of FASD and allocate resources accordingly 
    • Legislate for warning labels on all alcohol products to alert women of dangers of drinking during pregnancy 
    • Educate all health professionals in recognising, assessing and referral of patients with possible FASD 
    • Expand multidisciplinary diagnostic centres across the nation in conjunction with research monitoring and evaluation using the Gold Coast diagnostic clinic as the exemplar 
    • Provide FASD specific services and programs for those diagnosed with FASD and |or make FASD training mandatory for all staff likely to come into contact with people with FASD and their families 
    • Ensure all teachers can informally identify children likely to have FASD and understand their needs and interventions which will reduce likelihood of children acquiring secondary disabilities at school 
    • Recognise human rights of individuals with FASD and provide appropriate services and advocacy for those caught up in justice system.

     ......................................................................................................................

    New Support Group launched

    Western Australia has FASD Support Group launched on FASDAY on the 9th September 2015.  It can be found on FaceBook at https://www.facebook.com/groups/RFFADA.FASD.WA/

    New website launched on the 13th November 2015

    The Queensland FASD Support Group has a new website - http://qldfasd.wix.com/qldfasd

    .......................................................................................................................

    The Pledge

    Stamp out the Stigma of birth mothers of children with FASD (Fetal Alcohol Spectrum Disorders)

    Petition text:

    I pledge to work to Stamp out the Stigma of birth mothers of children with FASD.  I join the rffada, NOFAS and the NOFAS Circle of Hope in supporting this campaign, and I believe:

    • Blaming and shaming birth mothers of children with FASD serves only to stigmatize women and their families and does not help to prevent FASD.  Having the courage to speak out as a birth mother and share one’s story takes courage and DOES help to prevent FASD. 
    • Women who drink alcohol during pregnancy and have a child with FASD nearly always fall into three categories:
    • They suffer from the disease of alcoholism and are unable stop drinking alcohol on their own
    • They are not aware that they are pregnant 
    • They are unaware or are misinformed about the risks of alcohol to their unborn baby
    • The stigma of birth mothers increases society’s indifference to FASD and is a major barrier to helping individuals living with the disorders. 
    • Women who use alcohol during pregnancy should be provided with appropriate medical intervention, support, and resources to recover from the disease of alcoholism 
    • When writing or talking about individuals living with FASD, people-first language should be used, placing the person before the disability.
    • When writing or talking about FASD, language describing the biological basis of FASD should be used (FASD is associated with prenatal alcohol exposure) instead of language describing a behavioural basis (FASD is associated with a woman’s consumption of alcohol during pregnancy). 
    • The NOFAS Circle of Hope peer-mentoring program exists to help women cope with their grief and remorse. Empowerment and support helps keep moms sober and helps to prevent FASD. 
    • Healthcare professionals are vital to FASD prevention and ending the stigmatization of birth mothers. They should ask female patients about their alcohol use in an open and non-judgmental manner. 
    • Incarcerating women does not prevent FASD. It increases stigma, ignores the possible lack of early awareness of pregnancy, and can prevent appropriate treatment for alcoholism and addiction. 
    • Biological, adoptive, and foster parents, caregivers, and everyone can be part of the FASD solution by learning about the disease of alcoholism and addiction, listening to the personal stories of birth mothers, and supporting the mission of the NOFAS Circle of Hope.

     ........................................................................................................................

    Research

    Are you the mother of a child with Fetal Alcohol Spectrum Disorder?  Researchers at Murdoch University would like to talk to you about your early experiences and the role that health professionals and family (and friends) played in influencing your decisions about drinking alcohol during pregnancy.  The purpose of this study is to try and understand who it is that women go to for support and what advice is helpful.  Please click on this link for further information.

     ........................................................................................................................

    Criminalising Alcohol Consumption during Pregnancy

    The rffada does not support the criminalisation of alcohol consumption during pregnancy. The rffada strongly empathises with the many Australians living with FASD and their need for access to services, the staff of which have been trained in the delivery of FASD-friendly programs, interventions and strategies. The rffada advocates for FASD to be recognised by the government as a disability and urges governments at all levels to invest in interventions and direct assistance to individuals with an FASD. However, the rffada does not support the premise that an individual with a FASD is a victim of a crime and, therefore does not support any form of compensation that has the effect of criminalising alcohol use during pregnancy. 

    Paraphrased from a statement written by NOFAS

    ...............................................................................................................................

    Study confirms dangers of fetal alcohol exposure

    Research led by Biology PhD student Ben Laufer, right, under the supervision of Biology professor Shiva Singh, has confirmed earlier findings that exposure to even low levels of alcohol during pregnancy impacts gene expression and molecular alterations in the brains of newborns.

    "Even a single binge dose of alcohol, at any time during pregnancy, results in alterations in gene expression and associated FASD-related (characteristics)," Laufer said.

    .................................................................................................................................

    AMA Alcohol Summit

    The Summit culminated in eight recommendations forming a Plan of Action for the Australian Government however, none mentioned FASD other than acknowledging it as one of the many effects of alcohol use.

    The rffada respectfully requests that the AMA considers the inclusion of a more robust and action orientated recommendation specifically for FASD comprised of 3 parts:

    1. An ongoing, national educational campaign which offers details on the benefits of abstaining while pregnant, before conception and while breastfeeding. Combined with this message will be details of the condition itself citing symptoms, signs and characteristics. This message will be given in such a way as to avoid panic but inform the public. A campaign such as this will serve to provide the audience [which will consist of a broad range of population, from teenagers to medical professionals], with a consistent message
    2. Have FASD acknowledged as a disability by the federal government.
    3. Reduce the frequency of mis-diagnosis of FASD so that children do not have multiple diagnoses which ignore the brain-based cognitive impairment of prenatal exposure to alcohol

     ...............................................................................................................................................

    Thank you to Fetal Alcohol Syndrome Information Network

    Peggy Oba and her family organisation The Fetal Alcohol Syndrome Information Network have made a welcome donation to the rffada. Thank you Peggy and family, this will mean printed brochures and posters to distribute to organisations and additional support for our parents and carers

    ...............................................................................................................................................                  

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

    Powered by Joomla
    Built by Energetica