Kurt is joined by Angelene Bruce; a biological mother of a child with FASD, a FASD advocate, speaker and parent mentor.
Together they chat about Ange’s FASD journey, her appearance on the Channel Ten TV show, The Project and caring for a child with FASD.
For more information about FASD, please go to: https://www.nofasd.org.au/
The Project – “Hidden Epidemic Of Fetal Alcohol Syndrome”: https://www.youtube.com/watch?v=rd1yOhImDKA
Angelene’s Twitter Page
Producers: Kurt Lewis, Louise Gray and Julie Flanagan
Narrator: Frances Price
Interviewer: Kurt Lewis
Interviewee: Angelene Bruce
The copyright is owned by NOFASD Australia.
All rights reserved – No reproduction or use of this content without written consent of Kurt Lewis and NOFASD Australia.
The views expressed in this podcast are those of the interviewee. NOFASD makes every effort to ensure all content is free from judgement and stigma. NOFASD’s mission includes reducing stigma for families and individuals impacted by FASD.
Angelene Bruce Biography
Angelene Bruce is the biological mother of a thriving child with diagnosed Fetal Alcohol Spectrum Disorder (FASD). She is also a member of NOFASD Australia’s Lived Experience Expert Advisory Group, a member of the Victorian FASD Special Interest Group and is a passionate advocate for FASD awareness and prevention. Ange has extensive experience and training in all aspects of FASD and is dedicated to helping others understand how alcohol harms an unborn child’s brain and body. She works within a strict ‘no blame, no shame’ policy for biological mothers. Ange has been featured on Channel 10’s TV show, The Project, together with her child; has been a guest on multiple podcasts around the world; participated in media articles and shares her time willingly as a mentor and coach for parents and caregivers of children with FASD.
Frances Price (00:02).
How much do you know about the effects of alcohol during pregnancy? The reality may surprise you. Alcohol exposure while in the womb can damage the brain of the developing baby, causing it to develop Fetal Alcohol Spectrum Disorder or FASD. It may lead to lifelong physical, and/or neuro-developmental impairments, such as problems with memory, attention, cause and effect reasoning, and difficulties in adapting to situations.
For such an impactful disorder it is rarely spoken about in the popular media. NOFASD Australia’s podcast series is designed to raise awareness and understanding of FASD by giving listeners an opportunity to hear from those who have the deepest understanding of the impacts of FASD. This is Pregnancy, Alcohol and FASD – The Surprising Reality
The team at NOFASD Australia are focused on increasing community awareness of, and understanding of, FASD – which, despite its widespread prevalence in our communities, is still not widely understood. We also know that listening to those who have lived experience of this spectrum-based disability is always an excellent way of building knowledge and a deeper understanding, so throughout our podcast series we often feature the voices of those with lived experience.
In today’s episode our podcast host, Kurt Lewis, has the pleasure of speaking with a birth mother who has become a well-known FASD advocate through her willingness to share her story. I’m delighted now to hand over to Kurt who will tell you more about today’s guest.
Kurt Lewis (01:59):
Welcome, welcome, ladies and gentlemen, to this brand-new episode of Pregnancy, Alcohol, and FASD – the Surprising Reality. My name is Kurt Lewis, your friendly neighbourhood podcaster. I’m really looking forward to today’s interview, as I know my guest has a wealth of knowledge to share with everyone from her lived experience of FASD. In this episode, I’m chatting with a parent of a child with FASD, a regular guest speaker and a fierce FASD advocate. So, joining me today is Angelene Bruce. How’s it going, Ange?
Angelene Bruce (02:36):
I’m going well, thanks Kurt. Thanks for asking.
Kurt Lewis (02:39):
Nice sunny day in Melbourne?
Angelene Bruce (02:41):
Oh, it’s beautiful out there. We’ve got some rain and some clouds. My garden’s enjoying it. If we had ducks, they’d be enjoying it. But yeah, it’s a little bit chilly here in Melbourne today.
Kurt Lewis (02:52):
So, Ange, you were recently featured in an in-depth news story on Channel Ten’s The Project. I know that this has been also shared far and wide in terms of social media all around the globe. I’ve even seen it, you know, shared in Canada, in the US. What was it like being involved in this very important news story? I mean, this is probably the biggest news story about FASD to come out of Australia in years, really. How did it feel to be involved with that news story?
Angelene Bruce (03:22):
It was a real privilege for me to be part of The Project‘s presentation on Fetal Alcohol Spectrum Disorder, or FASD. It’s, was very, very important for me to be a part of a segment that was going to go nationally and to provide awareness around FASD, just to let the general public know what it is, and most important, it’s prevalence. It is caused by consumption of alcohol during pregnancy, but what a lot of people think is that it only occurs in people that are alcohol-dependent, or it occurs in First Nations’ communities only. So it was really important to me to be a part of that wonderful presentation, I guess we would say, to spread the awareness that Fetal Alcohol Spectrum Disorder is more common than we think. And for me it was quite daunting. But I’ll always be grateful for the opportunity to be able to spread awareness and to share my story for people to be able to see that I’m a mother who, I love my child, and my child has FASD.
That doesn’t mean that I love him any less. And it’s really important that people are aware that bio mum or birth mums love their children. And I thought that that shone through. And I was also really very, very happy to see that there was quite a bit of technical stuff that was put in there as well around prevalence, from Professor Elizabeth Elliott. And it was lovely to have Jess, a young adult with FASD on there as well. So, it came from three different perspectives, and I think it was wonderful for the general public to be able to get a better view of FASD because it, it is out there hiding in plain sight everywhere around us. And a lot of people in Australia do not know what the FASD acronym even means. So even for a, a very basic level of awareness, I was thrilled to be part of that, and I am grateful to Channel Ten for putting that production out there in primetime. It was a very, very good experience, positive experience for myself and for my son. He was part of it as well and, yeah, it was a real experience for him. So, yeah, he thinks it’s kind of cool, you know, he’s a 12-year-old that’s been on national TV. So, yeah, it was a great experience and a very, very important segment.
Kurt Lewis (05:57):
I found it very informative that it was out there, especially in primetime. As you said before, it’s not as well-known as it should be, FASD. I remember when I first learned about FASD back all the way back in early 2019, I didn’t know, even know what FASD stood for. And now that we have a program out in the primetime, it’s, it’s great to have that level of exposure for Fetal Alcohol Spectrum Disorder.
Angelene Bruce (06:21):
Yes. And it’s particularly handy that it’s running with, alongside the “Every Moment Matters” campaign as well. To have something like that out in primetime, I thought was a really big step in the right direction for FASD awareness, which is desperately lacking in Australia.
Kurt Lewis (06:38):
Do you remember when you first learned about FASD?
Angelene Bruce (06:42):
I found it very difficult to find anything about FASD. A big part of my story is that I was actually told that I would be unable to fall pregnant without IVF, and we could not afford that. And my mother had passed away a year before and I was self-medicating on alcohol, and I had done that previously. There was some trauma in my childhood as well, but it really took off when my mum got sick, and then I was told that I would be unable to conceive without IVF, and then I drank a lot more alcohol, self-medicating on that. I was desperately sad. My mum died from brain cancer and there still hasn’t been a survivor to this day, unfortunately. It’s a terrible one. All cancer is bad, I might add, cancer sucks. And this hit me particularly hard, and I drank a lot – and then I found out that I was pregnant.
That was an ecstatic moment for me. And it was also a moment filled with terror and horror because I knew how physically dependent I was on alcohol. And just to elaborate on that a little bit: so, my drinking had escalated to a point where I was a 24/7 top-up drinker, which basically means my tolerance was so very high to alcohol that as soon as my blood alcohol level would start to drop or get close to zero, I would start to become incredibly sick. So, I knew that this was potentially a life-threatening situation for my child and for myself. So, when I went to my very first OB/GYN appointment, I disclosed that I was drinking and that I was a recovering physically-dependent alcoholic who had relapsed. So, I was drinking again and the response I received was to, ‘You must stop that. Go away and stop that.
And when you come back to me, you need to be stopped with that.’ That was not very helpful advice for me at all. In fact, it’s important to note that anybody who’s physically dependent on alcohol, that’s really quite dangerous advice. Nobody should ever, ever, ever stop drinking suddenly if they are physically dependent on alcohol – it does require medical intervention. So, I knew that wasn’t an option, and the next thing for me was to jump on the internet. In 2008, the only thing I could find was FAS, Fetal Alcohol Syndrome. And really the only thing that I could even find about that were images of facial features, the sentinel facial features that come along with FASD. So, the vast, vast majority of children born with FASD will not have the sentinel facial features.
Kurt Lewis (09:31):
I believe it’s only like about 20% of people with FASD have those sentinel features.
Angelene Bruce (09:38):
That’s correct, yes. And, and it was all sorts of acronyms. It was very, very, very confusing. Nowhere did I actually find FASD. So, I’m really super pleased that that is being used as a global term now to describe what is a Fetal Alcohol Spectrum Disorder, because it is a vast spectrum. But in answer to when did I learn about it, I learned on the go after my child was born. To be honest, there was very little information back in 2008 and 2009 when my son was born. So, I fumbled along, and I knew it was bad to be drinking during pregnancy. That’s why I was looking this stuff up in the first place. But there wasn’t anything out there the way there is now. And I’m really, really grateful and I’m really happy that there’s so much more information for women to get to now, even if such as myself,
it was in the middle of the night when you’re feeling desperately fearful and desperately ashamed and scared and not knowing what to do. It’s comforting to be able to jump online and find things. So, I’m really pleased there are Facebook groups, that there is NOFASD – wonderful website. None of that unfortunately existed in 2008 when I was pregnant. So, I did the best that I could at the time, and just watched my son very closely for the developmental delays that we now know come along with FASD. Well, for my child, they didn’t really start appearing until it was time to start talking and communicating. And that’s when the communication delay was much more prevalent. My son wasn’t able to articulate the way other children his age could. And so that was when it was time to go and try and find a diagnosis. And that was also a little bit of a challenge.
Kurt Lewis (11:34):
If you don’t mind me asking, what is it like parenting a child with FASD? What are the major challenges?
Angelene Bruce (11:42):
The most challenging thing that I’ve found about parenting a FASD child is the lack of understanding from the general community. Allied health needed to be informed as to what FASD was. Most allied health providers are providing for children with autism and ADHD, and FASD children require very specific FASD interventions and accommodations. The interventions used for ASD kiddos, it doesn’t work for children with FASD. So, it wasn’t just a matter of getting the diagnosis, I needed to find clinicians, and then I needed to educate the clinicians as to what the differences are between autism and FASD. The interesting thing here is that the symptom crossover is huge. There is a lot of stuff in the processing, sensory – there’s a lot of crossover. However, the interventions need to be really, really different. So a big challenge was finding clinicians and, you know, to their credit, absolutely to their credit, all of my son’s allied health professionals – there is a psychologist, an occupational therapist, and a speech therapist – and all of them took the time out to watch videos on FASD to learn what the differences are, how it’s different, and to apply a different form of therapy for my son.
And they have actually said that had they not watched the FASD videos and just gone ahead and applied their usual ASD interventions, that it would’ve gone really, really horribly, really bad. So that has been difficult, but that’s all been set for quite some time now. Probably the other biggest challenge about parenting a FASD child is understanding how their brain works. You need to understand every FASD child will be very unique. Just as every child is unique. Every single child with FASD will have different strengths in different areas and different deficits in different areas. No two will ever be the same. And so, it was figuring out which accommodations worked best for my child. So, the challenging behaviours, which are actually symptoms that we are seeing as behaviours because the kids don’t have the words in the moment, so they’ll behave out their feelings.
So what was common in our house was throwing things, yelling, wanting to leave the room. And I must admit I was guilty of chasing for a long time. Whereas, you know, as it turned out, my child was just trying to tell me with no words, ‘I need to be left alone right now. I need to have my space’. Definitely the most challenging part, but yet also the absolute most rewarding part, has been learning exactly how my child’s brain works, because a lot of the time I need to be his external brain. And that is challenging, trying to be two steps ahead to prevent potential spot fires. I’m not saying at all that that is easy. It isn’t. It’s incredibly challenging and it takes an incredible amount of patience and practice to walk away from a situation where your loved one may have just called you a bad name.
And you have to realise that it’s not personal in the moment. It, it isn’t personal. And in ten minutes time, my child is going to need me available for a hug and he will need to know that I still love him, because he’s just spat something out in the moment, and he doesn’t mean it. Yeah, definitely challenging part is to remember not to take it, anything, personally. And we’re talking about an invisible brain-based injury disability here. So, any behaviours that we are seeing, or that I see, I’ve now learnt, are some need that my child has, that is not being met either by myself or the school or the, the general environment. So, whilst it’s a challenge, it’s also kind of cool to pop your detective hat on all of the time to constantly be seeing what was this trigger? Cos the trigger might not have been that we didn’t have apple juice.
The trigger might have been that two weeks ago, we didn’t go to the trampoline place when we were going to. It is very challenging to emotionally moderate two brains at the one time. But essentially as the parent of a FASD child, that’s what’s required a lot of the time to make things run a lot more smoothly. You do really need to have to be a detective to really get into the nuts and bolts of what’s going on here. It could be sensory, it could be tiredness, it could just be my child’s thirteen. It could just be teenage angst and teenage sassiness. So, I think I should add my greatest challenge at the moment is trying to decipher what is teenage smarty pants and what is FASD <laugh>. So, there’s also lots and lots of really out-of-the-box accommodations, that’s really fun.
My child loves running water, so I get help doing the dishes because there’s water involved. Yeah. So, it, it is really interesting. And no day is the same either. Every day is going to be different. There’s a, a graphic that I really like that describes their brain as a light bulb, and some days it will, some days it will shine brightly, some days it will flicker. And other days, there are those days, when no matter what we do, we can’t get it to switch on. So, the challenge is to figure out which thing on which day, and accommodate appropriately. So yeah, just because my child is able to remember something and do it today, doesn’t mean that he’s going to be able to remember it and do it tomorrow. And that can be a really big challenge for both parents and caregivers and educators.
Kurt Lewis (18:06):
Well, it’s interesting you should mention that, your son loving running water. A lot of emphasis is placed on discussing the deficits that are often more apparent within those living with FASD, but it seems to be much less discussion on the strengths. Can you tell us about the strengths that you’ve experienced with your son, and are there any particular strengths that you are trying to nurture and encourage?
Angelene Bruce (18:31):
Absolutely. Probably his biggest strength – I’m giggling when I say this, and I’m really pleased about this too – is that his respect for the law and authority is second to none. And we’re talking about when we go off to speech therapy, if there’s a crossing that is 20 metres away from where I want to – even 50 metres away from where I need to – cross the road, I’m not allowed to cross the road if we don’t go to the crossing, because that’s jaywalking. That he is very thoughtful about people around him as well. I’ve noticed specifically through COVID times that he’s been very diligent in putting a mask on. He’s had his vaccinations, he absolutely hates needles, but he felt very strongly about getting his COVID vaccinations, and I thought that was really very, very brave and a really good social and moral compass. He genuinely cares about the wellbeing of others.
He’s very, very good with animals, all animals. He really likes them, and they seem to like him. He’s very good with younger children. He has foster siblings at his father’s place and he’s very, very good with them as well. His sense of humour is a killer. It’s really, really, really good. And I, I probably should point out that humour in this house is the great diffuser, and I have heard from many other parents and caregivers that humour is the great diffuser with their FASD children in their homes too. So yeah, humour is a, is a strength, compassion for others, caring, a good social compass and a, a very good grip on what’s fundamentally right and wrong. So reading is a really big strength of my son’s. Mathematics is a really big struggle. What I like to do with anything, really, with regards to accommodations and interventions, is look at the strengths and try and incorporate them into anything that we’re trying to do for a deficit in a particular area.
So in our case, it would be music, for instance, is another strength. My son enjoys music. So, with times tables, they really don’t stick. They’re very, very tricky. But we sing them, because if we sing them, they stick a little bit easier. I’m not saying that, you know, that it fixes all problems. But because singing is a thing that he likes to do, and times tables is a thing that, that he really doesn’t like to do, if we incorporate singing into the times tables, we get them done. I get a better response and a more participation as opposed to an ‘I really don’t want to do this, mum’. It’s a subject that he’s not strong at. He knows it and he doesn’t particularly like it. It’s difficult and it’s hard to persevere. Again, FASD is a, an invisible brain-based injury, so his brain gets very, very tired.
Imagine pulling a double shift every day, for anyone who’s ever pulled one. That’s what our kids go through and, and they’re the challenges that they face every single day. So, I’m always up for strengths, identifying the strong strengths because all FASD kids have superpowers, exceptional superpowers. My child hates art and he hates drawing. But I’ve seen some children and adults that have exceptional artistic ability. I always like to celebrate strengths because I feel that although we need to talk about deficits when we are talking about planning for school, or IEPs, or anything of a diagnostic style, we need to concentrate on deficits. But I think we should also really celebrate strengths, and we should try and make our interventions strength-based so that the children will actually enjoy and become much more engaged in doing something that they really don’t like doing, but they’re kind of doing it.
The times tables, we don’t like times tables, but we don’t mind a tune. So we get the best of both worlds, and I’ve found that there has been much, much more success working around the strengths. For instance, my son can only go to mainstream school for four hours a day. So, subjects, uh, such as foreign language, art in his particular case, art is a little bit too abstract. Freestyle art is my son’s worst nightmare. He literally doesn’t know where to begin, and he would much prefer to have a two-step, not, not three-step, three steps is too much, but a two-step instruction as opposed to abstract free time. So, he can only go for sort of half the day. But he’s very, very interested in animals. So I’ll often take him up to the Cat Protection Society, which is just around the corner from us, and he’s quite well-known and liked there now, and he will just hang out with the cats that are waiting to be adopted.
And so, yeah, they’re always pleased to have him and it’s really beautiful watching him with the cat. He’s a natural introvert, and I think the cats kind of see that in him. He, he just sits down in the corner and says, right, you guys will come to me if you want to, and if you don’t, you won’t. I’m not going to even walk towards you. And yeah, invariably the cats will come over to him and he gets a, a lovely couple of hours out of that, and he comes out feeling really proud of himself and really accomplished. And that’s where I’m coming from, from the strength-based things. You know, our kids know what they’re not so good at and it’s really great to see confidence building. That’s what I need most for my child. But yes, anything that I can do to build confidence, and it’s really lovely to actually to see your child bounce out of somewhere with, with a big smile on their face and lots of confidence, because my son will think that he’s not quite up to it, but I’ll never ever set up anything for him that I know, (a), he’s not strong at ,and (b), he’s not going to succeed in.
I think it’s really super important that we give these kids as many wins as we can because we’re always talking about deficits in diagnostics and accommodations and whatnot. So I think it’s important to remember that these kids have superpowers as well, and we should be celebrating that. A really funny story that happened in the car not so long ago is my child knows that he has FASD, he knows what causes FASD so he knows why he has it. And we have had a, a conversation around that. He knows his brain as well because we talk about FASD so openly, he knows about what’s going on in his brain. And this one particular day he wasn’t at school, we had a speech therapy appointment. So I had said, ‘Righto mate, we’ll do speech, and then after that we’ll go and get your hair cut because it needs to be cut for school.
And then after that we’ll go and get your blood test for Dr. Serena’, who’s uh, my son’s paediatrician. And he looked at me very blank faced and he said, ‘Mum, that’s three things. Do you really think my brain’s going to have the energy to do those three things today?’ And I said, ‘You make a good point.’ And he said, ‘Especially because one of them’s a blood test and the other one’s a haircut and you know that I can’t stand either of them, but I have to sit there, and I have to be still. And I, I’m gonna be so tired after that‘. My son actually schooled me, <laugh>, because I was putting too much pressure on his brain that particular day. I really like that he does know what he has, and he owns it. It’s also really important to liaise with schools as well, to inform schools on what’s going on.
And it’s been invaluable for the school that my son’s at, I must shout them out. They have been really, really good. All of his therapy notes, bar psychology, which is confidential, gets CC’d to the school so they know what’s going on, and there’s also recommendations for them as well. And yeah, it’s just, it’s been a really, really positive experience. Every child is different, as I’ve said, and every situation is different. I’m a biological mom. I also understand that there are foster parents, there’s kinship, there’s adoptive parents, there’s all sorts of a myriad of carers and caregivers for children with FASD. But for me it was really important as a bio mom to have the conversation with my son as soon as I thought he was old enough for that conversation. So yeah, that’s another strength of his, that he does know what he has and he’s open to talking about it with his friends.
And I hear him talking to his best friend. And what was really interesting the other day, is they were running down the list of symptoms of FASD. And I actually thought to myself, oh-oh, I, I don’t know in which direction this could go, cause they were both in the car together with me – that’s my son and his best friend, who’s neurotypical. And it was really interesting that they were both running down through the symptoms and some of them were, ‘Oh, yep, definitely, definitely.’ ‘Oh no, I don’t have that’. And both in unison, um, they were saying, well, his best friend was saying, ‘You don’t do that.’ or ‘You don’t have that’. And that was a good experience for him as well, just to see that there are things, FASD is such a broad spectrum, that there are a number of things on the symptom list that my son could look at and say, ‘Actually I don’t. I’m not affected by that’. And I found that to be really powerful for him as well. But you know, as I’ve said, I’m just speaking from my personal point of view with regards to having conversations about children and about their FASD, It’s a very personal thing, of course.
Kurt Lewis (28:59):
Mmm. For those working on the topic of FASD, you’d know that unfortunately, you know, stigma around the cause of FASD often delays the pursuit of diagnosis and can be a factor in the way that people approach this disability. However, you are very open about your own personal story on, on social media and even in that news story I mentioned earlier. What is it like being a biological parent of a child with FASD who is so open about this? Have you experienced any negative pushback?
Angelene Bruce (29:34):
I have experienced negative pushback. I mean, I’ve actually, I don’t want to say I’m grateful for it, but it’s a good experience to have negative feedback as well as positive feedback, I suppose. And I must add that the positive feedback I’ve had from sharing my story across social media, and of course with The Project with Channel Ten, has been overwhelmingly positive. It’s very daunting. There have been some wonderful biological mothers that have come before me, both in this country and internationally, that are my heroes. But coming out and actually saying that you consumed alcohol during pregnancy is a very, very daunting thing. And it really shouldn’t be. Australia is, we’re a drinking country. We now know that FASD can be caused at low levels of drinking as well as high levels of drinking. And that there is no safe limit of alcohol consumption during pregnancy. Of course, we know that Fetal Alcohol Spectrum Disorder can occur no matter what.
Uh, if you have consumed alcohol and then stopped. And whether it’s a, a lady who has consumed alcohol prior to finding out that she’s pregnant and then she stopped straight away, or if it’s the woman who has consumed alcohol, according to the national guidelines, which up until quite recently, allowed a small amount of alcohol consumption during pregnancy. Or if it’s a woman such as myself who was self-medicating trauma, and technically wasn’t supposed to be able to fall pregnant – in all three categories, all women feel shame. And in all three categories they shouldn’t. Our bodies don’t tell us we’re pregnant until about six to eight weeks. So, and with about one third of pregnancies in Australia still being unplanned, it’s much more prevalent than we think. But it is really, really daunting, Kurt, to actually come out and say it. And I understand that because I’ve been through that myself, and I had to disclose the amount that I had consumed in order to get the correct diagnosis for my child.
He was diagnosed originally with autism, and on second opinion he was diagnosed with FASD. He does have slight sentinel facial features, but it was more my disclosure of my alcohol consumption that made the FASD diagnosis much easier, both for myself and for the professionals and for my child, most importantly, to get into the accommodations and interventions that he needed at such a young age. Having said that, being the biological parent of a, a FASD child does have its advantages. And I say this with the utmost of respect for any kinship carers, for any foster parents, and for any adoptive parents – utmost respect – because it’s hard. It, it’s very, very challenging. And quite often in that situation, birth records may, prenatal alcohol consumption, may not be able to be confirmed, which makes it terribly difficult for some people to obtain diagnosis.
You know, the way I see it, do I feel shame? Of course, I do. Absolutely I do. Do I, I wish that my child didn’t have FASD? Of course, I do. But I also forgive myself because I was, I was a 24/7 top-up drinker. I was self-medicating myself. I was doing the best that I could at the time, and I did the best that I could throughout my pregnancy. I will add that I did try to stop completely four times. And on all four occasions my child got into trouble, and I started to miscarry. The fourth occasion, he was actually born at 36 weeks when my water spontaneously broke. I did disclose, as you know, to my OB/GYN and that didn’t go well at all. Didn’t go well at all. So it did take me quite a long time to come out and say that again.
That was at diagnosis, when my son was three and he got his autism diagnosis. And I knew it wasn’t right. I just, I knew that although some kids with FASD can have coexisting autism, it just, for my child, the other symptoms of ASD were lacking. I was lucky enough to come across a FASD-informed paediatrician when my son was only three years old, still, for the second opinion, and he was formally diagnosed at that point – which was good. Coming out publicly and doing the work that I do on social media and all of that kind of stuff, was something that I just had a burning desire to do. I had disclosed, I had a diagnosis for my child, he has his accommodations and interventions. He’s doing really well and having some positive outcomes. And then I look around and I see so many children in both primary and high school that are just, they’re really struggling, which their kids are struggling.
I’m quote/unquoting with my air fingers here: um, they are ‘the naughty kids’, ‘the lazy kids’, ‘the kids that have trouble making friends’, ‘the kids that are always at the principal’s office’, ‘the kids that are getting kept in at recess because they didn’t finish their work’. Side note: they’ve done the very, very best they can. Please don’t ever keep them in at recess or lunchtime, ever. They need that time to get out there and get their body movement. And it’s also important to remember that with FASD children, it’s not malicious, it’s not deliberate, it’s not obstinance, it’s not ‘won’t’, it’s ‘can’t’ – yet. We used to say ‘won’t’ means ‘can’t’, but yeah, no, ‘won’t’, ‘won’t’ actually means ‘can’t yet’. Cos we’re now finding that our kids do catch up. It just takes a little bit longer.
And they may not completely always catch up. However, they’ll always have these superpowers, you know?
And if we can do, once again, back to the strengths, we highlight and hero those strengths, and our children can have really, really good outcomes. And yeah, the burning passion for me was, once I realised the prevalence of FASD, and once I realised just how difficult it was for my own child’s brain in a mainstream school, I kind of felt like I had a responsibility to not be silent anymore. I come from a 12-step background, so, in recovery, so, I was used to sharing about things that are, you know, less than favourable amongst groups of people. And I, I just really had a burning desire, that this is what I would like to do, and I’ve committed the next 20 years of my life to FASD awareness and advocacy and policy-making, and anything else that might come in there. So as far as the pushback goes, which is what we were talking about originally, I found it quite helpful.
On Twitter, I, I had a few nasty ones come back, you know, it was sort of, someone’s actually, I think I might have made a comment about a mask or something, and I’m not getting political here, but I might have said something about a mask. And then someone actually took the trouble to look up my profile on Twitter, see that I was a biological mom to a FASD child, and then write back to me and say, I don’t think we’ll be taking health advice from someone who deliberately damaged their child. Yeah.
So, when that happens, to be honest, the first couple of times I got really upset and I thought, can I do this? But then the overwhelming positive responses from the likes of NOFASD and FARE and all of the people that really matter in the FASD world, that all of that, the positive feedback I was getting, was enough to just keep going.
So, anyone who’s on Twitter, if anyone does that, I generally just quote them, and then I, I quote tweet it. And I’ll often tag in NOFASD <laugh> and I’ll just use it as, as an example of the horrible stigma that I’m trying to break for biological mothers of children that either have FASD or could potentially have FASD due to them consuming alcohol during pregnancy. I hate that mothers get dumped on.
We encourage everybody to have a drink in Australia. And then we flay mothers if they’ve done so, or if they’ve fallen into addiction like I did, we absolutely flay them. And I’ve been called a bad mother. I’ve been called a terrible parent. I’ve been called a drunk. I’ve been called a child abuser. I’ve been called lots of stuff with regards to the fact that I drank alcohol during pregnancy. And that right there is what stops women from being able to get help for their kids.
Because let’s face it, it’s about the kids. No offense, Kurt, I particularly hate it when dudes come at me –
– about drinking during pregnancy.
Kurt Lewis (38:50):
Oh no, I, I get frustrated –
- about that too.
I’ve seen some very, very ill-informed comments out there in the social media sphere, especially from guys as well, who’ve got no idea what they’re talking about.
Angelene Bruce (39:04):
Kurt Lewis (39:05):
I find it ridiculous. Absolutely ridiculous.
Angelene Bruce (39:08):
You know, I must shout out, there have also been quite a few blokes that have posted on there and commented about how brave it is that I’ve said what I’ve said, and I really, really appreciate that too. So, the negative, if I allowed them to, to affect me at all, I probably would’ve thrown the game away already.
But, I cannot allow them to affect me because there’s way more positive reinforcement. And that, it’s not even about whether it’s positive or negative. For me, it’s about getting the message out. My child is diagnosed, he’s well accommodated. I’ve studied up for the last couple of years on all things FASD. Also, for women, whether you know about FASD or, or you don’t, you know your child. And when it comes to your child, you are the smartest person in the room. It doesn’t matter if you’re talking to a doctor or a paediatrician or a speech therapist or a PhD or anybody.
It doesn’t matter. When it comes to your child, you are the smartest person in the room and you know your child. And I think that’s really important to empower women as well. For me personally, there was an awful lot of shame about the drinking, and the best way for me to get out of the horrible shame – because my son needed to go and live with his father for a couple of years, because I relapsed on all of this guilt and shame. And it was a horrible, horrible time. And I needed to forgive myself to be able to move on and help other women who are also feeling the way I was feeling. So, the way I like to put it is, when I was under the disease and, and the horrible hold that alcohol had on me, alcohol is a very selfish thing. I will not proud to admit that when you’re alcoholically dependent, alcohol is pretty much all you think about.
It’s almost survival, trying to beat withdrawals. And it’s a very selfish disease and it makes people very selfish. And I feel like dropping that and, and just telling it all how it is, warts and all, is the most selfless thing now that I can do both for my child and for other women that are, that are in my previous position, that are possibly concerned about their child. They may have seen the “Every Moment Matters” campaign, and thought uh-oh, well, I did actually drink during my pregnancy: is my child possibly affected? And if any woman’s thinking that, there should be absolutely no shame in them coming forward and saying that to any primary healthcare provider. And most importantly, not receiving the response that I did – that was terrible.
The, the response that I received. And we’re also doing a lot of education in sectors of allied health and of AOD and of all sorts of sectors.
So, for all the lovely women out there who may have consumed or have consumed alcohol during their pregnancy, you are most certainly not alone. We are working as hard as we can to educate the educators, to educate the doctors, to ensure that if you would like to come forward to say to a mental health practitioner, ‘Hey, I consumed some alcohol during my pregnancy. At the time I didn’t know that a small amount of alcohol could hurt my baby’. Or ‘At the time, I was physically dependent on alcohol, and I didn’t feel that I could come forward, but I’m coming forward now’. And those women deserve to be met with a ‘no blame, no shame’ – no judgement. They need to be ‘That’s very brave of you to come forward and, and do that. That’s a very selfless thing that you’ve just done for your child. Well done.’
You know, let’s move on and let’s see what we can do. If there’s a diagnosis, let’s have a look at a diagnosis, and let’s go through all of that stuff and let’s, you know, help your child who’s potentially walking around with a completely invisible brain-based disability and struggling really, really hard in all areas and all facets of life, when they don’t need to be. There is help, there is accommodations, there are interventions, and there are people like me that are willing to tell our story to help other women who maybe have not been able to find their voices. You know, I’ve found my voice, as you can hear, I talk quite a lot. And I, now that I’ve found my voice, I feel a responsibility to every woman who has not been able to find her voice yet, or maybe doesn’t even know that FASD was a thing or doesn’t know what FASD is.
And when they do find out that it could be possibly related to alcohol consumption in pregnancy, I don’t want them to shut the door on that straight away and say, ‘That’s – woo… I, I cannot say that. You can’t say that. I cannot say that. That is way too shameful’. I hear you. You are not alone, and you don’t need to feel ashamed about that. No matter from which three tiers I was talking about: if you’ve consumed alcohol before you found out you were pregnant, if you’ve consumed low amounts, because that’s what the guidelines said we could, or, if you are physically dependent on alcohol as I was – you didn’t grow up wanting to be that. Something has gone wrong along the way, and it’s usually trauma. All three facets of those women should absolutely feel no shame. That’s easy for me to say because we do feel shame. But from the general public, they don’t deserve to be shamed and they should not be dumped on for drinking in a country which is encouraged to drink. And as you can probably tell, I’m quite passionate about that one.
Kurt Lewis (44:57):
It’s a constant frustration for me, particularly, trying to explain FASD to people who want to create stigma, who want to spread that shame, who don’t want to listen to the information out there. And it’s, it’s, it’s frustrating, probably frustrating for you as well, I imagine, Ange.
Angelene Bruce (45:16):
It is, it’s really frustrating. And it, it also saddens me a lot because that barrier, that stigma, that judgement, and it’s not really even perceived judgement. There is an actual stigma and judgement that’s going on. So, it’s not false evidence appearing real kind of fear.
It, it’s a proper fear, fear. It’s backed up by, by evidence.
And in 2022, it just shouldn’t be. And I’m not frustrated at, like, I’m not standing up on a soapbox saying, ‘All of you women who drank, you should come forward.’ I’m not saying that at all.
I’m just letting women know that, you know, we’re doing everything we can to break the stigma around alcohol consumption during pregnancy. I don’t know if another barrier could possibly be that women are afraid of what their child’s life may look like if it’s confirmed that their child has FASD.
But as I mentioned earlier, there are certainly some challenges and deficits, but there are always superpowers there.
And having a correct diagnosis is always the best diagnosis. And for our children that have FASD, they qualify for the NDIS, my child’s on the NDIS, which helps with his supports. And he has holiday programs, and there is a lot of help and support and that, you know, that barrier is the stigma. And so, yeah, I was, just wanted to say that if anyone’s really worried about what their child’s life might look like, or what they perceive their child’s life may look like, I always like to put into my podcasts that whilst FASD is lifelong, it does not have to be a life sentence. And outcomes can be great. And yeah, my child’s having some great outcomes. But he was diagnosed at three and his early intervention started shortly after.
I actually know of a lady who is in her sixties and was diagnosed not long ago, and every single person in – an adult who has been diagnosed a little bit later in life – every single person that I know of has said that their lives have improved out of sight because they understand why they struggled in school, and they understand what their strengths are now and, and they can sort of tailor their lives to it. And just the fact that everything sort of drops into place, and things that previously didn’t make sense, make sense, because they have that diagnosis. And whilst early diagnosis is best, and early interventions, don’t think that if a child isn’t diagnosed by the age of sort of ten, that diagnosis won’t be beneficial, because it always will be.
Kurt Lewis (48:08):
Ange, I, I’d like to thank you so much for coming on the podcast and sharing your wisdom with us today. You’ve shared a lot of great messages with us, and important ones, and I’m glad. Thank you for your continued advocacy on this topic.
Angelene Bruce (48:24):
No problems at all, Kurt. Thank you so much for having me on. I really appreciate it.
Frances Price (48:32):
Thank you for listening to this episode of Pregnancy, Alcohol and FASD: The Surprising Reality. If you like this podcast episode, please show your support by leaving a rating and review on iTunes. We appreciate your feedback. All rights reserved. For more information about Fetal Alcohol Spectrum Disorder please visit NOFASD Australia’s website: www.nofasd.org.au