Are you a birth mother of a child with FASD?
The 12-steps for birth mothers has been developed for mothers who are finding it difficult to manage their feelings and emotions. These steps were presented at the European Conference in Berlin this September. Several medical professionals in the audience asked if they could take them back to their clinic. They went to France, Scotland and Berlin. The steps have now been translated into Spanish, French and German.
12 STEPS FOR BIRTH MOTHERS
Step 1
Accept that we are powerless to change alcohol use during past pregnancies but we can remain drug and alcohol free during our future pregnancies.
Step 2
Acknowledge that we used alcohol while pregnant because we were not aware of the consequences or because our own personal circumstances were unbearable, creating a situation which requires us to now be responsible but not to blame.
Step 3
Admit that while we are unable to change our past, we do have the power to ensure our affected children have the supports they need to be the best they can be.
Step 4
Make a decision that regardless of who we were or what we did in the past, we now have to do and be whatever will help our children achieve their optimal health and potential, at the same time being careful not to compromise our own.
Step 5
Make a decision to learn as much as possible about Fetal Alcohol Spectrum Disorder.
Step 6
To help our child obtain an accurate diagnosis, admit to ourselves and then to as many medical professionals as necessary that we indeed used alcohol while we were pregnant.
Step 7
Made a decision to persevere in our endeavours to obtain a diagnosis and appropriate supports by visiting as many medical professionals and services as necessary in order to obtain the support they need.
Step 8
Understand that holding on to our fear, grief, guilt, shame and anger will not help us or our children.
Step 9
Make a conscious decision to put aside any of the feelings in Step 8 in order to fully and effectively advocate for our child.
Step 10
Come to believe that our children had reasons of their own for choosing us as their parents[1].
Step 11
Make a decision that although we need to plan for the future and remember the past, we must remain in the present.
Step 12
Whenever and wherever appropriate, extend our knowledge, experience, strength and hope to others to enable them to make an informed decision about drinking during pregnancy and to assist other birth mothers. ©
For our Spanish speaking parents:
PASO 1
Aceptamos que somos impotentes para cambiar el uso de alcohol durante embarazos anteriores, pero podemos permanecer libre de drogas y alcohol durante nuestros futuros embarazos.
PASO 2
Reconocemos que se utilizó alcohol durante el embarazo debido a que no eran conscientes de las consecuencias o porque nuestras propias circunstancias personales eran insoportables, creando una situación que nos obliga ahora a ser responsables, pero no tiene la culpa.
PASO 3
Admitir que, si bien no podemos cambiar nuestro pasado, tenemos el poder para asegurar que nuestros niños afectados tienen el apoyo que necesitan para ser el mejor que puede ser.
PASO 4
Tomar una decisión que, independientemente de lo que fuimos o lo que hicimos en el pasado, ahora tenemos que hacer y ser lo que ayudará a nuestros niños a alcanzar su potencial óptimo de salud y, al mismo tiempo, teniendo cuidado de no poner en peligro nuestra propia.
PASO 5
Tomar la decisión de aprender tanto como sea posible acerca de síndrome de alcoholismo fetal.
PASO 6
Para ayudar a nuestro hijo a obtener un diagnóstico preciso, admitir a nosotros mismos y luego a la mayor cantidad de profesionales de la medicina que sea necesario que, efectivamente, se utilizó alcohol mientras estábamos embarazada.
PASO 7
Tomamos la decisión de perseverar en nuestros esfuerzos para obtener un diagnóstico y apoyos apropiados visitando ya que muchos profesionales médicos y servicios según sea necesario con el fin de obtener el apoyo que necesitan.
PASO 8
Entender que se aferra a nuestro miedo, el dolor, la culpa, la vergüenza y la ira no nosotros o nuestros hijos ayudará.
PASO 9
Tomar una decisión consciente de dejar de lado ninguno de los sentimientos en el paso 8 con el fin de abogar plena y eficazmente para nuestro hijo.
PASO 10
Llegado a creer que nuestros hijos tenían sus propias razones para elegirnos como sus padres.
PASO 11
Tomar una decisión que, aunque tenemos que planificar para el futuro y recordar el pasado, debemos permanecer en el presente.
PASO 12
Siempre y cuando sea apropiado, ampliar nuestros conocimientos, experiencia, fortaleza y esperanza a los demás para que puedan tomar una decisión informada acerca de beber durante el embarazo y para ayudar a otras madres biológicas. ©
For our French speaking parents:
Présentation à EUFASD 2018, Berlin, Septembre 2018
Elizabeth (Anne) Russel, Australie (rffada.org)
Introduction : Je suis mère biologique de deux garçons affectés. Je ne savais pas. Je voulais consacrer ma vie à aider les autres. J’ai perdu la moitié de ma vie avec mes propres enfants.
La méthode que je propose ci-dessous a été employée par 5 mères dans des groupes de parole depuis quelques mois. L’entraide entre mères biologiques est utile, comme entre anciens alcooliques. Comme dans un avion avec le masque à oxygène, l’idée est : se protéger d’abord, protéger l’enfant après.
La première raison pour écrire la méthode était de m’aider moi-même. La voici :
Etape 1 : accepter qu’on ne peut rien sur l’usage de l’alcool lors des grossesses passées, mais se préparer et rester sobre pour les grossesses futures.
Etape 2 : reconnaître que nous avons bu pendant la grossesse car nous ne connaissions pas les conséquences, ou parce que notre propre situation était insupportable, ce qui nous rend responsable, mais pas blâmable.
Etape 3 : admettre que bien que nous ne puissions changer le passé, nous avons le pouvoir d’assurer que nos enfants affectés ont le soutien qu’il leur faut pour être le mieux possible.
Etape 4 : décider que, quoique nous ayons été ou fait dans le passé, nous devons maintenant être et faire tout ce qui aidera nos enfants à développer leur santé et leur potentiel, tout en prenant soin de préserver le nôtre.
Etape 5 : décider de se documenter autant que possible sur les TCAF.
Etape 6 : permettre à nos enfants d’obtenir un diagnostic exact, et admettre pour nous-mêmes et pour autant de spécialistes de santé que nécessaire qu’en effet, nous avons bu pendant la grossesse.
Etape 7 : décider de persévérer dans nos efforts pour obtenir un diagnostic et du soutien pour notre enfant, rencontrer autant de services qu’il le faudra, s’attendre à être stigmatisée, mais ne pas l’accepter.
Etape 8 : comprendre que rester sur nos sentiments de peur, culpabilité, honte et colère n’aidera ni nos enfants, ni nous.
Etape 9 : décider consciemment de
mettre de côté ces sentiments pour défendre pleinement et efficacement nos enfants.
Etape 10 : croire que nos enfants avaient leurs raisons propres pour nous choisir comme leurs parents.
Etape 11 : décider, tout en reconnaissant qu’il faut planifier le futur et se rappeler le passé, qu’il faut rester dans le présent.
Etape 12 : Partout et dès que possible, étendre notre expérience, nos forces et nos espoirs à d’autres pour les aider à prendre des décisions informées sur la consommation d’alcool pendant la grossesse.
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Book by Elizabeth [Anne] Russell
If you would like to read the 2nd edition of Alcohol and Pregnancy My Responsible Disturbance by Elizabeth Russell, you can find it here.
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Find the Australian Diagnostic Guidelines on Fetal Alcohol Spectrum Disordere here
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FASD TRAINING DELIVERED AROUND AUSTRALIA
Anne Russell delivers training with a unique perspective. She offers examples of the various symptoms from her own experience with her children both of whom have given permission for her to do this. This personal experience fleshes out the clinical information and research she has undertaken since 2000. There is no one else in Australia delivering training in FASD who has this combination of experience. She has co-authored studies, participated in research, delivered at conferences around the world, raised two children with FASD, obtained diagnosis of both children in Canada, developed training and written books on the subject. Anne has delivered training in many remote communities in the Northern Territory and Queensland and has been able to connect with the participants as she discloses she is a birth mother, providing support and a non-judgemental perspective for other mothers who may feel shame about their situation.
Email Anne at elizabeth@rffada.org for her schedule of programs.
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FASD Hub Australia
Funded by the Australian Government Department of Health, the FASD Hub website provides a one-stop-shop for information for health professionals, parents and carers, other professionals (education, justice, child protection, disability services), researchers, and policy makers
In addition to the written content, there were a series of videos made for the FASD Hub website – these can be found at https://www.fasdhub.org.au/fasd-information/understanding-fasd/fasd-hub-videos/
There are also videos featuring children and families living with FASD that were funded under a different project – this series included 3 videos that you may also find useful
https://www.fasdhub.org.au/fasd-information/understanding-fasd/living-with-fasd/
There are also other videos featured in different sections of the FASD Hub website – focus more for health professionals etc. There are also videos that have been made by Australian Indigenous organisations for an Indigenous audience.
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BIMA PROJECTS 98.9
BIMA INDIGENOUS RADIO has produced some excellent audio of interviews undertaken by a number of people around Australia. You can listen to these interviews at FASD PODCASTS
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The first mainstream prevention message in Australia.
The rffada, with generous donations from My Pathway, and several parents and carers, has produced a prevention video. This particular video is targeted at 30 plus parents and is a very powerful message. It is based on the format developed by the Alaska Mental Health Trust who very graciously allowed us to use their format to Australaniase it.
It is for use by anyone at no cost and it is recommended that anyone delivering training on FASD use it as an example of the message they wish to deliver.
The video was created by Ring of Fire Productions in Cairns.
Next year we will create another video targetting teenagers and young adults.
Elizabeth [Anne]
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Queensland Family and Child Commission
The QFCC FASD page has been published https://www.qfcc.qld.gov.au/news You can also view the videos by Anne Russell, Dr Shelton and Phillip Barrett on the QFCC website https://www.qfcc.qld.gov.au/news/fetal-alcohol-spectrum-disorder-fasd-learning-forum-cairns and a facebook post will be uploaded today as well. ‘Raising a child with Fetal Alcohol Spectrum Disorder’ – Phillip Barrett‘ Important messages about FASD for professionals’ – Dr Doug Shelton‘Understanding Fetal Alcohol Spectrum Disorder’ – Anne Russell, Russell Family Fetal Alcohol Disorders Association.
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SELF CARE RAPID AID MESSAGE SYSTEM
[S.C.R.A.M.]
KEEPING OUR LOVED ONES SAFE
Providing access to a support network and medical information to front line services via any internet ready device while still maintaining privacy
SEND AWAY FOR YOUR S.C.R.A.M CARD BY VISITING
www.SelfCareRapidAidMessage.com
or by ringing (Australia) 04 3269 7983
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Latest papers from Jerrod Brown
FST-1.3-FASD-A-Review-for-Criminal-Justice-and-Legal-Educators.pdf157.05 KB
FASD_and_differential_diagnosis_and_therapeutic_challenges.pdf1.9 MB
FST-1.3-FASD-and-Art-Therapy-An-Exploratory-Review.pdf283.86 KB
FST-1.3-FASD-in-the-Criminal-Justice-System-Invisible-in-Plain-Sight.pdf118.09 KB
FST-1.3-Social-Dysfunction-A-Key-Deficit-in-Adults-with-Suspected-and-Confirmed-FASD.pdf166.6 KB
FST-1.3-What-Forensic-Professionals-Need-to-Know-About-FASD.pdf249.19 KB
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CDC GUIDELINES
The CDC recently released its guidelines on alcohol and pregnancy – if you are drinking use contraception, if you are not using contraception, dont drink! Some people have not understood such seemingly harsh guidelines. Watch this video before you decide to drink.
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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 mainsttream studies 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:
they want to get out of your office not because they really understand
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:
- Mental illness
- Drug or alcohol use or abuse
- Relationship problems
- Unstable accommodation
- You will see them over and over
- They are likely to be in crisis much of the time
- They may not attend appointments
- Have been in trouble with the police
- &nbs
p; They did not finish school - 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 anne@trainingca.com.au.
New Review of FASD Literature Identifies Hundreds of Co-Occurring Conditions
January 29, 2016
Researchers at the Centre for Addiction and Mental Health (CAMH) in Toronto, Canada have published a review which identifies more than 400 distinct disease conditions that may co-occur in people with an FASD.
Published online on January 5th by the journal The Lancet, the article examines the results of more than 125 studies. A total of 428 potential co-occurring conditions are identified, affecting nearly every system of the body, including the central nervous system, vision, hearing, the heart, circulation, digestion, and musculoskeletal and respiratory systems. While the association with FASD does not necessarily represent a direct cause-and-effect link, many of these disorders have been shown to occur more often among those with FASD than in the general population.
To read an online summary of the article, click here
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Research on the fathers’ use of drugs and alcohol at conception on fetal outcomes
This is information provided to me by a Canadian PhD student 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/
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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.
EMAIL ANNE ON elizabeth@rffada.org for a copy of the latest iteration of the Screening Tool
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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.
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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.
- Healthcar
e 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.
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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
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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.
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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:
- 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
- Have FASD acknowledged as a disability by the federal government.
- 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
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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
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