Stories from Australian mums and dads living with babies, children and young adults with a FASD
From the parents
Strengths of children living with a FASD
- They can be very good at many things
- They can be loving, affectionate, friendly, artistic and musical
- They may work well with animals and plants
- They can be very loyal and show a great determination to succeed in life
- They can succeed when the environment is adjusted to suit their needs
Sue's Story
Sue Miers AM is the foster mother of a daughter with Partial Fetal Alcohol Syndrome. Sue has cared for her daughter for 28 years and has dedicated the past 13 years to helping other parents of children with a FASD. Sue was awarded the Member of the Order of Australia in 2006 in recognition for her services to the community through the establishment of the National Organisation for Fetal Alcohol Syndrome and Related Disorders (NOFASARD), to community education and to reconciliation.
Sue's experience is that:
- raising a child with FASD is challenging, tiring and emotionally draining
- parent and carers experience feelings of grief and loss - hopes and dreams they had for their child may not be realised
- parents and carers worry about their child's future should they become sick or be unable to provide the on-going support for their child needs
Parents have told her that diagnosis:
- was the catalyst that opened the door to meeting their child's needs
- brought relief - provided a reason for their child's difficulties
- removed the blame from them and their child - alcohol's effect in pregnancy was to blame for their child's behaviour difficulties
- enabled them to find out more specific information about the disability
- gave them the knowledge they needed to be stronger advocates for their child
- helped them understand their child had brain difference and their child's behaviours were "normal" for them
- paved the way for trying different parenting approaches and to see their child as one who maybe "can't do" rather than one who "won't do"
- enabled them to change goals and set realistic expectations for their child
One of the key objectives for NOFASARD is to provide information, advocacy abnd referral options for families supporting are suspected of having FASD.
To read more about the work of NOFASARD please go to the NOFASARD website or contact Sue Miers via email sue@nofasard.org.au or phone on 0418 854 947
Elizabeth's Story
Elizabeth is the birth mother of two boys with a Fetal Alcohol Spectrum Disorder. She is a recovering alcoholic sober since 1998. She is telling her story because it may help another woman and their families. Elizabeth has published three books and has written a letter to birth mothers.
Read Elizabeth's letter to birth mums
You can find more about Elizabeth and her journey and read her books at:
Russell Family Fetal Alcohol Disorders Association
Lorian's Story
Lorian is a Bidjerra woman from Central Western Queensland's Carnavon George. She is an elder of 127 individuals with 93 being prenatally exposed to alcohol, a birth mother and grandmother to daughters and a grand-daughter with FASD.
As a mature age student she completed an undergraduate degree in Applied Health Science and a Master's degree in Epidemiology. She is currently working on her PhD at the University of Queensland.
At the closing ceremony of the 4th International FASD Conference in Vancouver Canada in March 2011, Lorian was presented with the Starfish Award in recognition of her dedication and commitment to FASD and for having the courage to make a difference.
Listen to Lorian's story in The Power of Knowledge: Reflections from the experience of birth moms.
Stories from other mothers
Recovering Hope: Mothers Speak Out About Fetal Alcohol Spectrum Disorders (video)
"Recovering Hope" features a series of women who tell poignant and memorable stories about alcohol use during pregnancy and its effect on their children. Their experiences are supported by expert clinicians and researchers who talk about disabilities associated with FASD and evaluation and intervention services.
From the children and young adults
Elizabeth's youngest son
"I really didn't understand what it meant for me. I am the same person but have more of an idea why I do the things I do. My parents understand me better now."
Elizabeth's eldest son
"I didn't understand at first. I felt bad but mainly for my mother because she blamed herself and she didn't know. It has made me more aware that I need to concentrate harder on what I am doing. If I saw a pregnant woman drinking I would tell her that what she is doing could be dangerous to her child."
Kate
I guess the reason I have Fetal Alcohol Syndrome is because my real Mum drank alcohol while I was in her stomach. I think it is really sad because she didn't get any help. For me, I find it hard dealing with this Fetal Alcohol Syndrome because I would love to stick at my work but something in my brain stops me from doing the right thing.
I really hate it when I stuff up because then I feel that people see what I do and judge me by that and not who I really am. I don't like that because I feel that's why I lose a lot of friends. I wish I had a friend that would understand me and help stop me from doing the wrong thing. But, I have a lot of loving people around me that give me the right advice for things in my life. I try to be the best I can be but I seem to fall off track. So I have to try hard and be the best I can be.
So to everyone reading this it is a bit full on having this disability.
This is an extract from "Kate's story" in Alcohol & Pregnancy - A Mothers Responsible Disturbance Russell E (2005) Zeus Publications
Luke
Luke is an 8 year old boy who has a FASD. His story is told by his adoptive mother.
Useful Links
These links do not imply any endorsement, support or commercial gain by the Alcohol and Pregnancy Research Group or the Telethon Institute for Child Health Research.
Parents and Carers (Australia)
Living with Foetal Alcohol Spectrum Disorder - A guide for Parents and Caregivers
Drug Education Network
This guide introduces the Fetal Alcohol Spectrum Disorder from infancy to adulthood. Developed with community involvement the guide aims to assist those in the caring role. The publication covers FASD screen and assessment, advocacy, care strategies and educating children who live with FASD. This current version is undergoing a third review. You can order the resource or download a free copy.
National Organisation for Fetal Alcohol Syndrome and Related Disorders (NOFASARD)
The National Organisation for Fetal Alcohol Syndrome and Related Disorders (NOFASARD) is a Commonwealth charity and the peak community organisation for FASD in Australia. They provide information, advocacy and referral options for families supporting children/adolescents and adults who have or are suspected of having FASD. NOFASARD has well established national and international networks and collaborative relationships with other committed organisations and interest groups. For more information please visit the website or contact Sue Miers on 0418 854 947 or email sue@nofasard.org.au
Russell Family Fetal Alcohol Disorders Association
RFFADA is a not-for-profit health promotion charity dedicated to 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. Please visit the website or contact Elizabeth Russell on 0412 550 540.
Educating children with a FASD (Australia)
What Works. The Work Program: Core Issues 8
Education and Student Health: the big picture (Australian Government, Department of Education, Employment and Workplace Relations)
Please go the the Links section for a more extensive list of Australian and international websites for parents, carers, teachers, health professionals, training and resources.