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An interview with Elizabeth

The questions below are those that have been asked by delegates at conferences and by various media representatives over the last few years. For some people, the birth mother’s perspective fleshes out the condition like medical information and statistics can not.  Indeed, there is no way that any medical or allied health professional can truly understand the enormous impact of this condition on the affected person and his or her family without recognising and accepting this perspective.   
 

Q. What was it like for you when your son was diagnosed with fetal alcohol syndrome?
 

A.  It was a mixture of relief and disbelief.  I was relieved there was only one problem for us to deal with instead of a number of unrelated problems, but at the same time I couldn’t believe that he was so disabled because of something I had done.   I have never been able to describe this feeling adequately.  He is my son, my precious child, my baby and I hurt him – not just for a minute or an hour but for his whole life.   I felt so completely responsible.  In my mind I equated it to running over him in the car when he was a baby – the damage could not have been worse if I had.  Anyway that feeling was too horrible and I knew I couldn’t keep feeling it because I would not be able to cope, so I used a cognitive behavioural technique called ‘thought stopping’.  Every time I started getting those feelings and began thinking about what I had done to Seth, I stopped the thoughts.  Eventually I was able to think about it and talk about it without having those destructive feelings and this is where I am now.
 

Q. How did the children react?
 

A.  They seemed to be okay.  There wasn’t much of a reaction initially.  A few weeks later, Seth became angry when I explained to him that he needs to be careful about his spending because not being able to manage money is a symptom of FAS.  He said ‘good one mum!’  I have to say those three words almost killed me.  I kept saying to myself, ‘I can’t get through this. I can’t get through this’, but of course here I am several years later and I did get through it with the help of my wonderful husband Don, my friends and family.
 

Q. How did you explain fetal alcohol syndrome to your children?
 

A.  We were all gathered in the kitchen.  Mick was sitting on the kitchen bench, Don was sitting on his chair and Seth and I were standing. It was sunny – a Sunday morning. I started, “I’ve always thought that my drinking didn’t cause you both many problems, but I was wrong. A couple of months ago I found there was a condition called Fetal Alcohol Syndrome.  When a pregnant woman drinks alcohol it can cause this condition in her baby, and so on.  I tried to explain the rest as well as I could.  Some time during this Mick said, “What does that mean for us?”  I was hating this – I felt so ………………heavy —- so sad, but the boys deserved an explanation.  So that’s how they reacted initially – with surprisingly little emotion.  Mick has always been okay about it because he was not so severely damaged, but Seth, there are times when I don’t know why he just doesn’t yell, ‘why did you do this to me?’, but he doesn’t.  In a way I wish he would.  When I was really concerned about him just after I told him I wrote a poem and it really describes how I felt at that time.  Actually there are two poems. 
 

                      My’ Gift’                                                                His ‘Gift’

Bad aren’t they?
 

Q. How did your husband (family, friends etc.) react?
 

A.  They were all so very supportive, supportive of Seth and Mick of course, and also of Don and me.  They have supported everything we have done.  Don has never blamed me or said anything to hurt me and the boys have both been wonderful.   
 

Q. What do you find the most challenging about fetal alcohol syndrome?
 

A.  I don’t think there is any one thing more challenging than the other.  Everything about this condition is huge.  It seems that the brain injury results in symptoms that, when combined, couldn’t be more devastating.  What disability results in sufferers being good at small talk but without substance? Then add a kind heart but a violent temper; complex needs but no insight; a small frame with big expectations; and perhaps worst of all, a damaged mind but a beautiful face.
 

Q. What are your thoughts on the view that we should not diagnose fetal alcohol spectrum disorder because of the guilt that will be experienced by women?
 

A.  I think that’s one of the most hideous and damaging statements I have ever heard and the most selfish and idiotic thing about this condition.  Everyone has to pussy-foot around the mum and so the child is sacrificed so that the mum does not have to bear any guilt.  We don’t do that with any other disability in the world.  We are throwing away any chance the child may have for a better life when we do that.  People have no idea what they are sentencing the child to when doctors choose this route.  The child’s life will be hell on earth even with all the supports possible in our society – I have to say here that there are NO government funded FASD-specific services or supports in Australia at the present time.  But to make a choice to condemn a child to a life where he or she has a significant, invisible disability with no one to turn to, no supports, no understanding that he or she has a disability, no friends who understand, no doctors, no one!  I think it is an utter travesty of the basic human rights of everyone – not just the child.
 

Q. If you had the power to make any changes in Australia in relation to FASD what would you do?
 

A.  I would like to see a massive campaign targeting all Australians aimed at educating them about the devastating results of using alcohol in pregnancy.  I would also ensure there is a clinic in every capital city and every major regional centre which provides free multidisciplinary service for parents, carers, friends and family of affected individuals.  I would also provide free of charge, training in all aspects of support for affected people of all ages; support groups for birth mothers; support groups to cope with behaviour of affected children.  Then I would ensure that everyone in Australia understands the link between prenatal alcohol exposure and crime; prenatal alcohol exposure and drug and alcohol use; prenatal alcohol exposure and recidivism; prenatal alcohol exposure and rising mental health problems; PAE and violence; PAE and relationship breakdown, child abuse, sexual abuse, parenting problems, literacy and numeracy problems, rising levels of autism, Asperger’s syndrome, attention deficit hyperactivity disorder ——– and I can go on.  Having said this, I know that we need to prepare various studies and research relevant information and statistics so we don’t need to rehash figures from overseas such as the ‘1 in 100 for FASD’ statistic, but my focus is on affected people and their parents and family.  There are enough people suffering to warrant services in each city as an adjunct of Community Health with people who completely understand the behaviour of an affected person and completely understand what parents and family members need to deal with on a daily basis.
 

Q. Why is it so important that FASD be diagnosed sooner rather then later?
 

You know I’m sick of this condition being treated as different to other medical conditions or disabilities.  This question couldn’t be asked if the disability was diabetes or epilepsy, or heart condition.  Why on earth is there even any debate about this? The sooner that FASD can be diagnosed, the sooner appropriate strategies and interventions can be put into place to support the individual and his or her parents and carers to minimise the damage.  It will also reduce the risk of a subsequent birth of a child with FASD, and it will give us a better understanding of the incidence of FASD.
 

Q. What were the implications of a relatively late diagnosis for your children?
 

A.  Neither of the boys had the support of a one-on-one assistant at school or the benefit of understanding teachers.  There could have been so much more I could have done to help, particularly Seth.  He may not now be a drug addict and we could have made some changes to the way we managed money by introducing the Public Trustee as a matter of course at a younger age.  He could have died at any time – that very difficult time for us all may have been avoided.  An early diagnosis is imperative.
 

Q. There are many services overseas to support people with FASD, why do you  think it is taking so long for Australia to acknowledge and accept the condition exist
 

A.   I can only think that the alcohol industry has very wide ranging influence on the government or the government needs to cover up for leaving this condition and its sufferers so long without services and support.  What else could it be?
This brings me to another issue which is also quite stupid.  Why oh why are researchers trying to find a safe level of alcohol to give a pregnant woman?  Why?  Alcohol is a teratogen just like mercury was – did we try and find a safe level of mercury for mothers to take?  No! Why?  Because no one wanted to take the risk and a teratogen is a teratogen – it causes birth defects full stop!  Why try to find a safe level at which to consume a substance that causes birth defects? 
 

Q. What have the challenges been in liaising with Australian health providers?
 

A.  There are three primary challenges:
a)     The belief that FASD is rare because people seem to only talk about the tip of the iceberg – FAS not the other conditions on the spectrum which don’t have the facial features
b)     Inconsistent messages from ‘so called’ reputable sources
c)     Having to educate the professionals
I have to basically give every health professional a mini information session and then hope against hope that they believe me and don’t think I’m just a neurotic mother – that has happened many times in the past.  Community Mental Health told me that Seth would be okay and for me not to over-react.  He was suicidal and severely depressed but I was over-reacting.  That was probably because he looked quite okay and I was a complete mess.
 

Q. What is your reaction now when you see women who are pregnant consuming alcohol?
 

A.  I go over and talk to them.  I described the situation in my last book, Alcohol and Pregnancy – No Blame No Shame by writing a ‘letter’ to a pregnant woman who was drinking:
 

    “ Pubs are so much different these days to the way they were seven years ago before I had my last drink. These days they encourage families to have a meal or celebrate special occasions by incorporating play areas for children into their interior design. Coffee and tea is available for those people who prefer not to drink and I guess all in all it’s progress. It’s far better than it was when only men were allowed in a pub and women spent many hours alone at home or waiting in the car with the kids. But for all of our progress in this quarter, there has been no progress in warning women about alcohol and pregnancy.
So when I saw you and your partner celebrating your friend’s birthday with party poppers, laughter and what looks like an expensive bottle of wine I was tormented. Is it a contravention of a woman’s civil liberties to advise her that drinking can harm her child? Or is it a contravention of the baby’s not to?
I glance at you again and I can see you’ve been drinking. You toast the birthday girl with red wine and a short speech. You’re happy and everyone laughs at your funny discourse as your husband pats you gently on your large round tummy.
After what seems like hours of deliberating but is only minutes, I make a decision in favour of the baby and walk over to your table. My husband knows what I am thinking and grabs my hand silently asking if I know what I’m doing. I do – I think. My son and his fiancé watch me. And this is when we meet.
By writing this I wanted you to know what went on in my mind before I spoke to you – what I was thinking and how difficult it was to make the decision to walk over to you. I wanted you to know that I considered your feelings, your partner’s feelings and your friends’ feelings but none of that came close to the health of your baby. There really was never a time from the moment I saw you with a drink in your hand that I was not going to speak to you.
I sit down on an empty chair next to you and from the corner of my eye I can see my husband staring apprehensively at us, no doubt wondering if he would need to physically remove me from your table should you or your husband react badly to my message.
I say ‘Hello, my name is Elizabeth.’ I pause and moisten my mouth which has become suddenly dry, ‘I wonder if anyone has mentioned to you that alcohol can be harmful to your baby.’ I said looking down at your tummy. You stare at me and I can see that you are considering whether you are in physical danger from me.
Then you say quietly but with authority, ‘My doctor said it was OK to have a few drinks!’ I nod and reply, ‘Doctors aren’t giving a consistent message – in the United States they recommend abstinence.’ From the corner of my other eye I see your partner stop talking and look over to us. I feel surrounded but hurry on. ‘If you stop drinking now it will increase your chances of having a healthy baby.’ Your partner moves closer and I say ‘Hi.’ He nods back.
I smile at you both and before I move back to my own table I give you my telephone number. I tell you to ring me if you would like to talk to me. I also tell you I have more information if you want it. I leave – more nervous now than I was on the way over. I wonder what I have done, knowing all the while that if I truly believe in the title of my first book then I have done the right thing. Discussing this condition almost without exception will cause a disturbance but also without exception it will be a responsible one. I hope that you enjoy the rest of your pregnancy alcohol free and I hope that you don’t worry too much.
I know that telling you not to worry after my earlier warning is next to futile, but I would much rather have spent nine months concerned about the health of my baby than knowing that my beautiful son’s ability could have been protected by someone revealing to me one little truth, one little word – ‘abstinence’.
As I walk back to my table, I can see the unease in my husband’s eyes. He would rather I mind my own business, but he also knows that I can’t – not with this issue anyway. He’s a good man but doesn’t like to ruffle feathers. God knows how he has managed in the last few years.
I glance back at your table and see you looking at me. I also see disquiet in your eyes and I’m sorry it’s there. But it’s better now than later.
I hope that one day you will know somehow that my intentions were good and my information was accurate.
Goodbye and good luck.’
 

Q. What role do you see potential fathers playing in preventing FASD?
 

A.   Quite a major role.  They can have a huge influence on their partner’s habits.  That’s why I don’t like saying things like, ‘when a pregnant woman consumes alcohol’.  It’s more than just the mum herself who is involved.  It’s the partner – male or female – family, friends and even, as you can see in the letter above, complete strangers.  We all have a part to play in helping other people understand this condition.
 

Q. Given FASD is totally preventable, what would be the best medium to educate people about FASD?
 

A.  Well, actually, I don’t think that FASD is totally preventable.  Granted, all a pregnant mum has to do is to not drink alcohol and the child is not born with FASD, but it is not always as easy as that.  For instance, what about a mum in a remote Aboriginal community - (not that this is purely an Indigenous issue by any means) - but what about that example?  She is surrounded by friends who are also drinkers, there may be domestic violence involved, she may be hurting emotionally and physically and have no where to turn.  Also she does not even know that alcohol can cause problems.  Do you think in that case that FASD is totally preventable?
Q. How do you inform new people to your life about FASD and your children?
 

A.  I used to be very ashamed and just the thought of telling someone almost made me sick.  But after the first book was published I couldn’t hide.  I actually didn’t want to hide by then anyway because I realised that there were so few birth mothers in Australia who were able to speak out that I had a responsibility.  I believe that those who have the ability to do something also have the responsibility to do something.  Anyway as I became more comfortable, it became easier to tell people.  And then when I wrote and published my second book, I realised that I couldn’t write one thing and then behave differently.  For instance my second book is called Alcohol and Pregnancy – No Blame No Shame.  If I behaved as though I blamed myself and felt the level of guilt that I felt, then I would be going against what I expected other birth mothers to feel.  I didn’t want them to see a person who was so debilitated by grief and guilt that they couldn’t function, I wanted them to be able to move on themselves because I would not in a million years, blame a birth mother so why did I blame myself.  So in answer to your question – I just tell them.
 

Q. Can you explain what it is like to navigate a service system with no dedicated services for people FASD?
 

A.  Yes I can – it’s a bloody disgrace.  That’s all I can say.  It’s a complete and utter disgrace that there are no government funded disability-specific services for people with FASD and their families.   There is no adjunct to state and territory funded drug and alcohol services – NOTHING.  It is bloody hard to have to tell your story over and over, and then have some upstart tell you you are being neurotic, that there is nothing wrong with your child who has just put a rope over a beam in your shed and tried to hang himself. 

© 2008 Elizabeth Russell. Design by tristar web design ported by amos moses griffin, assembly by mike healy