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Share your FASD story

NOFASD Australia works with many families living with FASD to provide information, support, referrals and encouragement. It is often a difficult road to travel and we are inspired by the determination of parents and carers to find appropriate supports for their children.

This web page gives parents and carers of children living with FASD an opportunity to share their stories and experiences with the aim of providing support to others. We would like to encourage you to consider sharing your family story. You may wish to use the questions below as a starting point and we ask that you limit your story to 300 words.

We also encourage adults living with FASD to share their stories too. Click here for some stories from adults living with FASD in the USA.

Please contact us to share your story being sure to only include personal identifying information that you are willing to make public’

 

Suggested questions to start your family story

Q. How many children do you have in your care with diagnosed or undiagnosed FASD?

Q. Can you share a little bit about their story/stories without divulging identifying personal information?

Q. How old are your child/ren?

Q. How long have you had your child/ren in your care?

Q. What are your child/ren’s strengths?

Q. What do your child/ren find difficult to cope with?

Q. What has been your experience in trying to find support for your child/ren and your family?

Q. What strategies have you found to be most helpful in managing the difficulties your child/ren face?

Q. Is there any other advice you would give other families living with FASD?

Gina’s story

I attended NOFASD Australia training in Melbourne a few months back (which was wonderful), and fell pregnant myself late last year. When I went to the GP very early in the pregnancy, he told me to come back in a week and in the mean time to avoid cigarettes. I said to him "and alcohol too of course!" and he replied "well, two or three drinks two or three times a week won't hurt". I was pretty gobsmacked, as I know there's no safe limit and said that to him. Needless to say, I've got a much better doctor now, and I'm not going back to this guy! What worries me is that it's terribly dangerous advice and that as it's a bulk billing clinic near a housing estate there are a lot of vulnerable people who go in there that won't have the benefit of information from NOFASD education and/or training.

Sarah's story

Hi my name is Sarah, I am 21 years old and was born with Foetal Alcohol Syndrome. I live with my maternal aunt Deb and it was through her love of horses that I started riding at 4 years of age. 
I have had some wonderful ponies through my life but it wasn’t until Nippa arrived with his fantastic temperament that I have started to do serious competing.
I was accepted into Para-Equestrian when I was 19 years old. I have had a really exciting time competing and I am now the RDA QLD State Dressage Champion and also the QLD Para-Equestrian State Dressage Champion. We are travelling to Melbourne in November 2013 to compete in the RDA Nationals and hoping to have been selected to the Special Olympics Equestrian Team.
I am also currently completing an IT course. 

Amanda's story

My name is Amanda and we live in NSW. We have a six year old daughter who came into our care at two weeks old. She has a diagnosis of Fetal Alcohol Syndrome and brings lots of love and laughter to our home but as everyone who knows about FAS, we do have difficult days. This is a story about our experience with her starting school this year. 

It has been hard for our daughter and lots of work for me as I've had to really advocate on her behalf to get support for her. Technically our daughter is in ‘Out of Home Care’ and this means that I had the support of my case manager and Dalmar’s education consultant and their psychologist. First we set up meetings with the school to exchange information. We have learnt to choose our battles and try and ignore well-meaning advice from others who don’t know much/anything about FASD. I gathered all reports from the OT, speech therapist, doctors, early intervention preschool etc. I also went in armed with NOFASARD (NOFASD Australia) links and names of books that may be of interest to the teacher/staff. I had fact sheets on FASDs and highlighted certain things that gave examples of typical behaviour from a child with FASD including the information I got from the conference in Tasmania by Diane Malbin. We arranged for extra orientation sessions to help my daughter with the transition and to hopefully make the teacher more aware of her needs. 

The attitude at this early stage from the school was “let's just wait and see” and “I'm sure we will manage as she seems fine.” My daughter is experiencing difficulty saying goodbye in the mornings, she tells me she does not like school and her behaviour is getting worse at home (I think the behaviour is a sign of stress). Up until yesterday however the teacher was still smiling in the afternoon and telling me my child is fine. During class, one of the boy students took something from my daughter so she bit him and of course ended up in time-out asking the teacher what she did wrong. Then, when I arrived the situation was made worse when she had to tell me what she did wrong. Her reply was "I don't remember". The teacher is now saying “I will be pushing for all the help I can get for this child as I can see she really does need it”. Yay, finally! 

Three weeks later and finally the teaching staff understand what I am talking about. My suggestion to parents with children starting school would be to go in armed with as much information as possible. Be prepared to be treated like an over bearing parent who is more of the problem than the child. Allow the "experts to be experts" they will soon see it differently. Be patient with both the system and your child to see how things go, although don't allow the situation to get to the point where your child is being adversely affected. My advice to others would be to find out as much information on FAS as you can, link into support groups and attend conferences and workshops whenever possible. I would love to be able to talk to other carers/parents of children living with a FASD to share information and experiences.

A foster mother's story

I am a full time foster mum caring for four children aged between 6 - 8 years of age. Three of these children have been diagnosed with FAS or ARND. I have cared for these children for a little over six years and the journey has been one of steep learning, much frustration and self-questioning about my own parenting skills, but ultimately one of deep fulfilment, joy and continued hope for a brighter future. When the children came into our care my husband and I had our own three children which made a grand total of nine children, four under the age of two years. It didn't take very long into caring for the youngest children to realise that the eldest had some serious issues. She had absolutely no verbal language but excelled at screaming 24 hours a day for many months. The next youngest seemed to be quite placid or so we thought until six months when all this changed. The baby was a non-sleeper, very fretful and not easily soothed by anyone. That first 12 months were a blur spent soothing very traumatised children who were transported four days a week to their extended birth family for access so that they could bond. There was no possibility of structure and routine but once access became less frequent, a strict routine and structure was put in place even though this proved not to be the whole solution. The eldest two children were eventually diagnosed with FAS by a paediatrician and the third child has ARND. The eldest child (8) has a moderately severe learning disability; the second child (7) is intellectually bright but has huge behavioural issues and struggles immensely within the school environment; and the third child (6) has high anxiety levels and trauma based attachment issues. All three struggle socially and emotionally and do not easily cope with change and transition in any setting. They also have the added issue of being ‘in care’ and dealing with all the emotions from maintaining relationships with their mother and other siblings. Until their diagnosis I had never heard of FASD and certainly had no idea where to go for help or support. Professionals are now working with all three children and they have helped me source out relevant information and worked with me to gain understanding and much needed skills to care for them. Each child has their own unique personality and character and they are all loving, caring and creative. They are children full of fun and mischievousness but most of all they are happy and have bought to our family much love and joy. They have taught me much about life and about myself. The road ahead provides many challenges but everyday more things are discovered about FASD and the future looks brighter.

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Share your story

We are inspired every day by the personal stories of individuals and families living with FASD. Help advocate for an improved quality of life for people living with FASD by sharing the highs and the lows of your personal story and strategies that others may find useful.

Share your story