Kurt is joined by David, Nick and Mav each of whom is a male who cares for a child with FASD. While each of them has come into their child’s life in a different way, they find similarities in their experiences. Together they discuss what it is like to care for a child with FASD, including the challenges they face and how they help their children develop their own individual strengths. They also share the tools and resources that have helped them through difficult situations they face with their child who has this hidden disability.
For more information about FASD, please go to: https://www.nofasd.org.au/
To check out Mav’s book ‘Making parenting enjoyable: Through healing, purpose and meaning’ ; please go to: https://www.amazon.com.au/Making-parenting-enjoyable-Through-healing/dp/B0BVT722M9/ref=tmm_pap_swatch_0?_encoding=UTF8&qid=1685325469&sr=8-1
To express your interest in joining one of the online support groups offered in NOFASD Australia’s Families Linking with Families program please register your details at: https://www.nofasd.org.au/contact-us/ (Please note that these support groups are only open to residents of Australia.)
Producers: Kurt Lewis, Louise Gray and Julie Flanagan
Narrator: Frances Price
Interviewer: Kurt Lewis
Interviewees: David, Nick and Mav
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.
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.
One of the key aspects of supporting individuals with FASD to achieve their best outcomes is for everyone involved in their care to be united in a consistent and FASD- informed approach, which includes the implementation of strategies that support each individual’s own strengths. In today’s podcast, our host Kurt Lewis, will be interviewing a panel of three fathers, each of whom has come into their children’s life in a different way and at a different stage. In their fascinating and wide-ranging discussion, they explain what they’ve done to develop their knowledge of FASD, foster their children’s strengths, and also provide some key tips for other parents. Kurt, over to you now, as I’m sure our listeners are eager to hear more.
Kurt Lewis (02:02):
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 neighborhood podcaster. This episode it’s a little different. Normally we confine our podcast interviews to one guest per episode, but today we have three very awesome podcast guests here today who’ve agreed to take part in this little podcast panel. We have gathered this, a group of experts with lived experience here today to discuss a very important, and not very discussed topic, like a very unexplored topic. Men who take care of children with FASD, we aim to shed light on their experiences, the challenges, the triumphs of men who have taken the crucial role of caring for a child with FASD. I’m just going to go around the room now, uh, introduce my wonderful panel guests. Who are and how did you first learn about FASD?
Okay, I’m David. I live about an hour out of Sydney in New South Wales. About five years ago I married my English / Irish wife after I reconnected with her, after not seeing her for 15 years, two years before the marriage. In the meantime, she had fostered a girl from age six months and then adopted her through the courts when they decided in England, which is where she was, that the child would be moved to another foster family. My wife didn’t want this to happen and went through the courts to adopt her. She also has two sons that she gave birth to. And with our FASD youngest daughter, although she wasn’t diagnosed in the UK, my wife, through her own research and her experiences with Jody and contact with professionals and FASD experts, some that were overseas, was certain that she had FASD and given just her experiences with her, and what she found out about her birth mother’s history, and her sort of physical and behavioural characteristics. So, I first learned about FASD when I was reconnecting with my wife, with my now wife, and she told me about it, and her adopted daughter.
Kurt Lewis (04:15):
Thank you for that, David. It sounds like a very interesting journey. Moving down the screen – uh, Nick, the same question, if that’s okay?
Yeah. Hi, I’m Nick. I’m dad to five children, both biological and children that have entered our family via guardianship, and our journey with FASD, uh, it’s probably been over the last 10 years or so as we’ve been trying to find some answers for our two older children with challenges that they’ve been facing, and we’ve discovered some history around their pre-birth, etcetera, and ended up with a formal FASD diagnosis.
Kurt Lewis (04:49):
Thank you for that Nick. Another interesting journey really. Mav is next on my list. Mav would, would you like to answer that question too?
Yeah, sure. So, hello. So, my name is Mav, I’m a biological father of two amazing boys that live with FASD. I’ve been a single parent looking after them full-time for the last four and a half years. Came across FASD as part of the, I suppose, diagnostic journey that most parents with kids with FASD or any other disability go through. You know, through the different difficulties at school and at home and talking to different experts, and then eventually coming across the possibility and then eventually the actual diagnosis of FASD.
Kurt Lewis (05:35):
Thank you, guys for sharing that. All of you care for children with FASD, what has been some of the major challenges you have faced in parenting a child with FASD? I, I know some of you may have had experience in parenting other children. What has been the challenges in parenting, specifically a child with FASD? I’m just going to go in reverse this time. Mav, would you like to handle this question first?
So yeah, one of the, the things that I struggled with, was the tendency to focus on the child’s behaviour for anything that happened to go wrong at any given point in time and actually miss what led us to that moment. And then, what I mean by that, was that I think key to parenting any child, especially child that has developmental delays or difficulties with FASD, was to process my own trauma, childhood trauma as a parent and understand my own developmental difficulties that resulted from my own childhood and getting to the stage where my own three years were no longer standing in the way parenting a child that could get angry, could get emotional, that really needed a, a parent that is always calm and supportive, regardless of what has taken place. And I think, you know, getting to that stage where I move away from being a reactive parent to being a proactive parent and – again important for all parenting, but especially so for a child with a disability, I think that was quite challenging because again, that was a lot of work that I needed to do on myself was personal growth, if you like, and getting a diagnosis, that was tough because obviously there is no manual for this.
It’s a process of elimination, is a process of difficulties. You know, figuring out that a child isn’t lazy, a child isn’t pretending not to want to do things, they, they genuinely have difficulties. It’s not an easy process, right? Because you get feedback from, to start with a mainstream school, and, and making sense of what is going on, and actually seeing that, you know, the child might be in the wrong place, and they have different needs than most kids. I think that was tough. And you know, understanding as well the importance of school, understanding that the school is both a support and a source of trauma. You know, and again, this is a lot of hindsight in terms of personal growth and, the role of the school. I think that was huge when I realised the impact that the school has, is as big as the family home, if that makes sense.
Kurt Lewis (08:00):
Thank you, Mav, for bringing up some great points, especially about in terms of the behaviour and reflecting that kind of behaviour back, in terms of like dealing with children with FASD and sometimes they can express very difficult behaviours and modulating your emotions so that you are not exacerbating that behaviour. It’s, it’s very key and I think you, you brought up a lot of key points in terms of the schooling as well. Nick, do you want to respond to the question I just asked?
I think we’ve faced a lot of the normal behaviour challenges with kids with FASD, like meltdowns and property damage and that type of thing. But I think the challenge has been on our journey looking beyond that behaviour and trying to find answers. And we went through the process of our children being labeled with all sorts of different labels that didn’t really fit completely, you know, like ADD and, and that type of thing. Nothing that sort of covered everything that we’re experiencing and that was part of our journey of getting to that ultimate end of this is possibly something a bit more global. With the FASD diagnosis, it’s definitely been a journey for us that we’re parenting and doing all we can as a parent, but it’s still not enough and you know, how do we then partner with others and try to match up the right services. Finding service providers that are understanding has been a big challenge. And also trying to take other parties, like school, extended family, and friends on the same sort of journey that we’ve been on.
Kurt Lewis (09:28):
I’m already picking up, there’s a lot of similarities here in terms of some of the challenges that you guys have faced, in terms of like getting the right supports in terms of dealing with behaviours, especially behaviours that may lead to meltdowns. David, would you like to respond to this question?
Sure. I suppose I’m a little bit different than Mav and Nick in that I came in at the halfway stage I suppose you’d call it. We already had a child that the journey was done on identifying FASD. Her world was really her mother already. Her mother had become the absolute focus of her life and I had just joined in cold. So, there was adjustments for me to make I suppose, that were challenging. In a general sense, I suppose a challenge that the fact that every aspect of your life is sort of relentlessly affected by living with her symptoms, and the fact that uh, having a bad day doesn’t necessarily mean you’re going to have a good day tomorrow. And just the general managing and responding to her sort of classic FASD symptoms, which are things like inability to emotionally regulate, show empathy or reason.
And these were things I’d learned through the support group as well. Her difficulty responding to change or transitions. So, things like going from school, to school holidays and, and back again. And any change like that really from structure to a different structure, her problems at school with any sort of literacy or numeracy learning. So again, it’s, it’s like Mav says is – the role of school is huge in different ways, but what is going on there with her is that she is more and more sitting there disengaged with what’s going on and whilst the rest of the kids in the class learn. And so, there’s challenges there in the frustration, anxiety she feels and the behaviours that come from that. And I suppose another challenge is just dealing with her public behaviours at times and the responses of outsiders to them, the best way to do it.
I mean, there’s plenty of people who will give you the benefit of, uh, their experience in inverted commas, but you can’t really roll with that. You need to be sort of insulated against that I find a lot of the time and, and do what you know is – that you’ve learned is – right. So yeah, it’s, it’s ongoing challenges and as I said, it affects every aspect of your life continuously. It’s, it’s always there. So that’s the challenge. Against all that talk of challenge there is to me, a very strong feeling that you’re, you’re doing a very worthy thing providing love and security for someone who’s been given such a tough draw in life. You’ve got to keep that in mind. I think when you’re always thinking about the challenges, it’s easy to think about the challenges and, and how difficult it’s, but there’s a greater picture going on as well. And in that sense Jody’s, you know, her story’s a bit of a miracle. She was essentially totally neglected for the first six months of her life and then has ended up in Australia with two loving parents. Again, it just gives perspective to the challenges I suppose.
Kurt Lewis (12:25):
Mmm…I see a lot of panel members nodding a lot to what you’re saying there David, especially when it comes to the challenges of dealing with people who might not understand FASD as well as you know, the schools and getting the right sort of kind of supports. Are you surprised that there is a lot of the similarities between you all in terms of that? In terms of the challenges?
I’m not surprised because through that support group, you know that meets once a month online, there is a lot of common ground to the stories and the experiences and the feelings and sometimes the frustrations and sometimes the wins. So, it doesn’t surprise me that much. It’s quite interesting actually, you know, we all go away to our separate corners and have our experiences, but when you get together there is a lot of common ground. I think if everyone’s on the same page of trying to do their best, their experiences are quite similar.
Kurt Lewis (13:18):
Nick, you wanted something to add to that?
Yeah, through that uh, the parent support group again have seen the number of families going through the similar situations. I think often it’s important not to box your children that they’re going to necessarily have those behaviours or react that way. I think what is also very similar is, or well, sorry, probably dissimilar, but similar in some senses is the challenge of navigating the system, be that schools or the health system or NDIS or other support systems, and the different approaches that people have been able to get from the different systems, which I think adds to the whole challenge, is it’s not consistent. You can have one family that gets an enormous amount of support from one particular angle and a family just a few suburbs over that doesn’t get any, which yeah, is immensely frustrating.
Kurt Lewis (14:09):
Hmm, I can imagine. Mav, is there anything you wanted to add to this?
No, not at this point.
Kurt Lewis (14:14):
No problem. So, my next big question is, you’ve listed like a number of challenges. How have you overcome some of these challenges? Was there a particular resource or strategy that really worked for you that you’d like to share today? Nick, I’m going to go for you because I’ve started with David and Mav and I want to start with you now Nick.
Sure, thanks. I think one of the ways that we’ve helped overcome the challenge is education. Us as parents being proactive. We’ve taken part in the NOFASD parent training program, which was really helpful.
Kurt Lewis (14:48):
That was, that was Families Linking with Families, right?
Yep. And highly recommend that to anyone. And so, having that understanding yourself, the other thing that I, I think we’ve really tried to do is get everyone that’s working with our kids working on the same page. So that’s your paediatrician, anyone else that might be involved. For us it’s been paediatricians, psychologists, occupational therapists, etcetera, and school, and getting them all on the same Zoom call or in the same room, so that we’ve got a collective approach and understanding, has really been helpful. For us as well it’s taken us, a while to find the right medication, that has worked for our children, and I know that’s sometimes a hard one for some people. Just everyone working together and – uh, yeah.
Kurt Lewis (15:36):
Well thank you for that Nick, that’s very enlightening. David, would you like to have a go at that question?
Yeah, my wife passed on some things to me that she was doing sort of therapeutic parenting type stuff, but I suppose there’s other sort of personal things. We live in a fairly semi-rural setting, so to be honest, Jody’s interactions with the outside world are, quite limited compared to say living in a city or something. But some of the things certainly personally patience and calmness and I sort of do that by keeping in mind that she’s got permanent brain damage through no fault of her own. And really her behaviours are often basically out of her control and that we’ve got to view it through that lens. Some of the therapeutic stuff that her mother has passed on to me, uh, diversion and distraction when, when the meltdowns are really getting out of control, we really just have to divert and distract in some way. There’s also calming strategies like baths and sometimes we’ll get her outside to just break a few sticks, smash ’em into trees and things, that sort of thing.
Just to, we found that is something she will even identify that she needs to do these days, or perhaps taking herself off to a quiet room, which, you know, I’m really pleased to say she’s actually getting better and better at. She seems to recognise that herself, and, and just go away – probably mostly with me. She’ll blue till the cows come home with her mum, but I think when it reaches a certain point with me, and our relationship is a little different to her relationship with her mum, she will just take herself off to the quiet room. But as a general thing, and I, I’m, I’ll probably touch on this a bit later as well, but I, I discovered through having to look after Jody for two weeks on my own once, the maintenance of structure and the minimisation of sudden changes and surprises was critical.
So, if she knows what’s coming and it’s not going to take her cold as a surprise, your day’s going to be better. Still not going to be great sometimes, but it’s the big meltdowns or the big reactions are probably minimised by just keeping a structure and the surprises to a minimum, and personally looking ahead a bit, and understanding how she might respond to situations that are coming, and developing a strategy ahead of time and maybe even flagging some things with her. So, they’re probably the things that would immediately come to mind to deal with the challenges that are there all the time.
Kurt Lewis (17:56):
Has there any been resources, you mentioned a lot of lovely strategies there. Is there any resources that’s really worked for you?
Yeah, ours is a little different. We still don’t have a diagnosis and we’re still going through that process. So, the resources aren’t quite so available. We’ve got some good teachers at her school who are aware of her issues and are helping at school. They – she’s in a year six now, for five of those years there was someone else who actually was getting formal help within class. So, they used to sit Jody at that desk and Jody would be able to feed off that a bit. We’re going through some problems at school right now and some of the support that comes with that. School counselors and identifying classes that she might be able to be enrolled in in high school, that sort of thing. That’s opening up a bit more, but day to day we’ve got some good friends who will give us some respite at times.
Her behaviours are, are quite good at that initial stage of developing a relationship with someone. She’s an angel at that stage. It’s more as you’ve developed the full relationship with her that the behaviours will, you know, be reserved for you , sort of thing. We’re having some difficulties with diagnosis because it’s the old, is it ADHD or is it the – and there’s not a lot known about FASD and you know, I know what that’s like – five years ago I’d never really heard about it. And I mean I think Australia is, is pretty good. You’re seeing a bit on TV about it now, and that we are a little bit more aware of it over here. But yeah, in general it’s something no one knows anything about and the immediate reaction to me seems to be that they think it can be fixed, you know? If you do this, I’m sure she’ll see that you know how much you love her.
Kurt Lewis (19:39):
Yeah. Not many people understand. Think yeah, that that like it’s a permanent brain injury, like yeah.
That’s right and it doesn’t get better.
Kurt Lewis (19:46):
Sounds like you’re doing a lot despite not having the formal support, David.
Kurt Lewis (19:51):
I’m going to move on to Mav now. Mav, do you need me to repeat that question or are you, you good to go?
No, I remember the question. Yep. So, I’m good to go. Uh, look, in terms of overcoming the challenges, I think the first thing I always keep in my mind, you know, the advice I tend to give people is that whilst my journey has been quite challenging at times, it’s also very enjoyable, very feeling and very meaningful and you know, I think that can make a whole big difference in terms of how you target any situation and how you feel about any situation, right? Because we tend to experience what we feel. I actually wrote a book recently called “Making parenting enjoyable: Through healing, purpose and meaning”. And basically, you know, the, you know, different things that I’ve gone through and how we got to a stage where I got to grow as a person and as a parent and be able to support my kids to see the best possible outcomes.
The – I’d say most important thing for me is to remember, when things go wrong is to look, first of all, what I could have done differently to set up my kids for success. I try and figure out how my own childhood could have pulled the strings and led me to a place where I didn’t perhaps do the right things or reacted, you know, emotionally or whatever it might have been. But that is my starting point. It doesn’t matter what my kid has done, I start from, well what did I do that didn’t set them up for success? And I can give heaps of examples if, if you like. Then I’d say, like David and Nick said, you know, it’s important to always be kind, wiser, stronger, bigger than your kids. You know, remember that you’re always the adult that is usually important because obviously, you know, that creates certain relationship dynamic that is quite healthy.
And I always look for opportunities to build trust in the relationship between me and my kids and always look at opportunities to strengthen my kids’ self-esteem. And I think that is the source, the, you know, the bulk of the problems we experience as parents of kids with FASD, it’s true in my case, they have to do with trust and lack of self-esteem. So, as an example, when things go wrong and you know, the kids mess up and the kids they’re going to mess up, maybe more so, because they have FASD. I make it okay to mess up. So, I’ve never had a go because they’ve messed up. I would look at, what are they missing from their toolkit, what could I model to help them next time realise that they could have done something perhaps differently. I make it okay to experiment, I make it okay for them to be themselves, because they’re very different and they know that.
And making it okay can make a huge difference, right? So, if you want your kids to be honest especially, so again kids with FASD, so make it okay to make mistakes. And again, I’m going from my experiences, and I certainly encourage them to disagree with me and both my kids have got an ODD diagnosis, and that can come up as a big problem when you’re raising kids with FASD. But by building the self-esteem, building the trust, and making it okay to disagree, actually we’ve taken out pretty much all of the emotion out of it and all of the anger out of it. They can still disagree, and they know that it’s okay to disagree, but it’s never a battle anymore. I encourage them to make it okay to take the initiative, even if it’s not what I would’ve done. So, if my kid wants to clean up the, you know, the dishes, and they don’t do them as I wanted to, and out of nowhere, they try and use the dishwasher for the first time and the dishwasher is unusable, I’m not going to have a go because it damaged the dishwasher.
I’ll celebrate the fact that they tried to clean the dishes, and you know, perhaps at the end of it encouraged like next time, okay, you know, we could have done this, so we didn’t actually break the dishwasher, if that makes sense. Because that is the bit where you can drive a lot of the, the line if you like. The confabulation is driven from that lack of self-esteem, the lack of trust and the consequences that come of it. And I’m pretty proud to say that we’ve got to that stage where they will say, yeah, I messed up. You know what I mean? I made a mistake. And that that has made a huge difference in, in our family life. The other thing that’s been hugely important was to love them unconditionally, and obviously that love was always there, but obviously being explicit in terms of how I’m expressing it and the kids being clear that I love them uncondition, it doesn’t matter if they’ve messed up, they got in trouble in school with their friends or at home, that love is a given.
It’s, it’s never gonna change. There is nothing and no one can ever do for that to change. That creates a huge foundation for them. I’d say actively listen. Uh, we talked about schooling. When kids, especially kids with FASD, they say I don’t want to go to school. What I’ve learned the hard way is that I’m telling you that is a serious problem at school. It could be I’m being bullied, it could be, I have no idea what everyone else is talking about. It could be I cannot concentrate. It could be that I’m aggressive when I go to school and I’m angry. But a kid with FASD cannot actually articulate what it is they’re going through for a number of reasons. But when they say I don’t want to go to school and this is true of any situation, but especially school, you listen, and you encourage them to talk more as and when they’re ready.
But when my kids say I don’t want to go to school or if they say they are unhappy about something, I take the reality as true. I never challenge it and I never try and dispute it or make it okay. I make it okay for them to just say how they are feeling and encourage them to talk more. And again, it makes a huge, huge difference because a lot of the things you cannot fix. My youngest was bullied massively at school, especially the mainstream school. You can’t fix that unless you change school, which we did. But I don’t try and pretend that that is okay or, or try and fix because you can’t fix that, right? But I make it okay for him to express that. So, my youngest was nonverbal all the way to year three when we say in school and now he’s fully verbal.
So that was the impact of the bullying at school, it was enormous. And then my final points around that was always give a choice and which again, I don’t think we do enough, especially with parents of kids with disability, but my kids have a choice on everything and there are clear boundaries, right? You don’t want to go to school, you don’t have to go to school, but that means that you’ve chosen not to also have your PlayStation or your internet in the evening and it means you can’t play or watch like on the screen for a bit later that you like, right? So, you decide, and they don’t necessarily like the boundaries, but it’s about developing decision-making capacity. So those boundaries and I’m, I’m very firm, so you made the choice, you, we stick with it, right? Always calm and I always stress that you’re not happy you’re not having screen time.
I’m not happy, that the last thing I want to be doing is taking away the screen time. But you made a choice you didn’t want to get up in the morning. And it’s incredibly effective, especially for kids with FASD, especially my kids with FASD, giving them the choice, including things like therapy, believe it or not. And their attendance has been fantastic, especially since we go to the stage where they actually have the choice about therapy where they, they will not push back. ’cause my youngest, again not verbal for a while, he didn’t want to go to speech therapy or do occupational therapy. So, when I gave him that choice, suddenly all that opposition went away. And it’s pretty incredible, because again it’s all about developing the decision-making capacity and also being honest with them, having the difficult conversations. So, it has been a big relief and it has been incredible to see them grow when we talked about what is FASD, how it impacts them because they know they’re different, you know, through no choice of their own.
But knowing that their executive functioning, obviously in child appropriate terms, but that their executive functioning is not at the same level as their peers. it has made a huge, huge difference in terms of understanding themselves and not feeling like failures. You know, again, building that self-esteem and working obviously on the strengths, like understanding what they’re good at. Difficult conversations include when I mess up. So, if, if I drop the ball and you know, might be stressed with work or something else, I’ll apologise. Or if you know I’ve made a bad decision, I’ll apologise to them. And that’s how they learn to, you know, be open and obviously apologise as well when they mess up and be vulnerable, right? So, if I’m sad about something, I’ll say I’m sad about something like help them develop their emotional vocabulary, teach them how to be vulnerable because they go through huge emotional turmoil with the difficulties that they have.
So, if you don’t actually help them build the emotional vocabulary and teach them how you open up, they’re not going to get it from anyone else. And then my final point was around the school. I changed school for both my kids and the impact was incredible. It took me years to realise that they needed a different, uh, school environment. Something that I regret deeply – not realising that they needed to change school sooner. But the impact was incredible ’cause we had addressed the issues at home, you know, through my personal growth. It was not issues with my kids. I think they’re incredible kids. It was an issue of me growing as a parent. But then once we tackled that, they were making great progress at home, then I realised that actually the other big piece of the puzzle is the school.
Kurt Lewis (29:15):
Thank you for sharing your wisdom and your experience with us. We’re definitely going to include the link to your book in our show notes of this podcast. If anyone’s interested in checking it out. A lot of strong reviews on them. It’s probably definitely worth checking out. My next question – many professionals researching FASD are now stressing the importance of strength-based approaches. I’m wondering how each of you is doing with identifying your children’s strengths and whether that has made a difference. David, I’m going back to you first.
We’ve had a little bit of success with Jody in that we’ve identified horse riding as something that’s satisfies or, or utilises her strengths. Now she’s always been the kid, very active, very energetic and quite fearless. She’s the kid who always climbs to the top of the tree while horrifying all the other parents, while we sit there quite calmly knowing that she’s not going to fall. So, we’ve identified a couple of strengths and the horse riding one we have great hopes that maybe she’ll be able to have that as a big part of her life, including perhaps some employment further down the track. She’s done lessons for a year – for her age and the number of lessons she’s had, she’s quite advanced. A couple of the people who are giving her lessons have identified her as a bit of a project, but she’s actually quite gifted at it.
It’s like a combination of, like I say, her fearlessness, her energy and she’s got a love of the horses. So, it’s really rescuing things at the moment. If she didn’t have that in her life and it was just school and living with us, I think we’d have a lot more problems. And the other – recently we encouraged her to do running, and only a couple of weeks ago she won the open cross-country running race at her school and that was against 12- and 13-year-old boys and girls and she’s 11, so we’re in the middle – that again, identifies the sort of person, or the sort of character she has, and the physical attributes she has and it’s giving her something it, you know, we strategise with her about how she would run the race and she went out there and did it and she’s off to some sort of representative zone carnival next. So yeah, on the topic of identifying strengths, that’s definitely working with Jody at the moment and it’s probably a hugely important part of her life right now. And going ahead I think, yeah,
Kurt Lewis (31:46):
Wow, well done and fostering all those amazing talents right there.
One thing I would add there as well, is really it’s given her the experience of winning as well, including with the horses, these little things they do, you know, at all stages of their learning how to ride a horse and she goes along to a pony club now I take her there on a Sunday and they do some competitive stuff and she’s had some wins there as well. And it’s just, you know, the value of that, I find hard to describe really, but just her reaction, what it does to her for the next few days and, and what it gives her to talk about to other people and kids at school. And to show ’em. <laugh> the other day, she actually had a fall off her horse and first thing she wanted to know was quite a, it could have been quite serious for, but it’s one that they all have to do at some stage. And first thing she wanted to know is had I filmed it so she could go around sharing it on her various bits of social media and we’ve already had musical soundtracks to it on the way home in the car and all sorts of things. <laugh>, yeah, just a, a great thing for her to be doing right now.
Kurt Lewis (32:49):
Nick, I’m going to move on to you. Uh, did you want me to repeat that question or are you happy to answer?
I’m happy to answer thanks. I think you’ve just got to keep looking for the strengths. Sometimes they’re not always obvious and sometimes I guess they don’t always stand out to you. One of our children’s strengths is he’s just incredibly focused and he likes to do a project from beginning to end. So, it’s sort of simple things like he loves to go and clean his bedroom from top to bottom and that can also be a way for him to take space and time and sort of emotionally re-regulate himself, or that can also look like, for him, cleaning a car from top to bottom and he’ll pull everything out and vacuum everywhere and, but he becomes hyper-focused and so it’s rewarding those strengths. And you know, the other day I said to him, “Hey, I’d really love. if you could clean this car this weekend sometime”. So, not a set thing that he has to do then and there, but, and then you know, he gets rewarded for doing it at the end.
Outdoors I think is a really great one for our boys. Sports played a big part in the past, as they’ve got older not so much, but one of them is really into fishing, you know, fostering those things where, and I think as a parent learning about the things that they enjoy. So, for me that’s meant, uh, this morning sitting down and looking at a fishing book and talking through different fish and things that I’m not at all interested in, but helping them with their strengths. I always try and encourage when going into meetings, it’s often that we talk about all the problems, like with school and things, but trying to get professionals to start with what have the wins been this term, or this year, and what can we celebrate? And remembering that there are strengths.
Kurt Lewis (34:27):
Thank you for that Nick. Quite often people don’t realise it’s just, it can be any activity, anything with that has a reward or anything that interests a child can be that kind of strength as well. And people don’t, often don’t realise that, but good job in that fostering that. Mav, would you like to take that question?
Yeah, sure, yeah, agree with the points obviously David and Nick have made there, and similarly I think my view is that I always try with my kids to always catch them doing well. So again, it doesn’t matter what happens, it doesn’t matter if things haven’t gone plan, I’ll focus on what it is that we’ve done well, right? If, if the carpet is destroyed, the carpet is destroyed, did they take initiative to do something? If that makes sense. I think one of the things that I’ve noticed over the years is that the more we, we build the capacity to make decisions, kids with FASD, obviously they are used to a life where they get a hard time at home, potentially at school or especially at school for not doing what everyone else is doing. And it’s a constant criticism game, if that makes sense. So, by building that capacity to make decisions and make them feel trusted, and trusting themselves and building that self-esteem, you know, again can become a real strength and you know, can become a real strength again in terms of them being able to say, well I did it for X, Y and Z.
They’ll explain their resource that they’ve made that. You know, as a parent I try and be mindful when I spend time, and actually try and have fun, you know, because I find that is quite a good way of figuring out what the strengths are. And I’m always amazed actually with the interest they have and, and you know, quite a deep knowledge in, in some subjects where I’m like, where did that come from? Like, you know, where, where did you learn all the differences of particular, you know, or the particular game they might know the different characters. I remember when my youngest started to talk suddenly I realised that he knew all the different types of storms and typhoons and different things and he could like categorise them, and I was like, wow, pretty incredible, right? You know, you have a special interest there that you like to dive deep, right?
But that comes with, you know, actually me being like mindful when I’m spending time, and actually taking an interest to do what it is that they enjoy. And I think too, you know, find opportunities where I encourage what it is that they’re taking an interest and some things might lead to someone like my eldest now bought a sewing machine and he making pillows and making other things, which isn’t necessarily what you would expect the, the teenage boy to be doing, but he’s taking an interest in that. So, if he wants to go to shop and get some more supplies to do more crafts, you know, again, you know, very, very happy to encourage, because quite a creative thing. It makes him feel good about himself and he develops an interest. And similarly, he has developed an interest in geology, so we’re ordering a lot of rocks off eBay, uh, and the house is full of different rock samples, but talk about them, describe about them, tell me about the different properties. And quite honestly, he likes to watch YouTube videos about rocks. I’m all up for that. There’s far worse that you could be watching. That’s what I do in terms of uh, yeah, on their strengths.
Kurt Lewis (37:32):
Thank you for sharing that Mav. Quite an interesting interest, if you don’t mind me saying. I know that each of you have participated in one of the free FASD support groups offered by NOFASD through our Families Linking with Families program. Could I ask each of you to tell our listeners about your experience in these support groups and how they assisted you? Nick, I believe it’s your turn to answer this question first.
Yeah, I took part in one of the groups, it was in the evening, which worked well with work and things and my wife had done one and encouraged me to take part. It was really interesting to, I guess unpack all of FASD and, and what that meant and just learning where our kids were coming from, and sort of just covered all the basics, some of the stuff you might know, but it went over that. And I guess one of the big things I found in those groups was learning from other people’s experiences, because you get to interact with other families and parents that are on the same journey and also learn a lot about different resources that were available and our options to pursue. So, I found it very informative and supportive.
Kurt Lewis (38:43):
Did you find that the being in a group with other parents and caregivers, a kind of sense of safety?
Yeah, definitely. I found everyone to be really open and honest about where they’re at, and some people at times got vulnerable and other people didn’t and that was okay. It was completely up to you what level you were comfortable sharing at, and yeah, you sort of felt like you did a journey over a number of weeks that the group was on.
Kurt Lewis (39:08):
Do you still keep in contact with any member of your group?
Yeah, I take part in a monthly support group that’s online, that’s actually made up of a number of different groups now I think. But it’s really great to chat and yeah, there’s a number of dads that attend that group and there was a number of, or there was a couple of dads in the education group that I attended.
Kurt Lewis (39:30):
It’s kind of great that there are other dads, I mean very good that knowing the other people out there who are undergoing the same thing, I, I don’t know, maybe, maybe it’s you feel differently Nick?
No, definitely. And I think no one has to do this alone, so if you reach out to others, yeah, even just recently one of their support groups was on and there was a parent that was really struggling and everyone was able to help with some ideas and suggestions and even just beyond that, just encourage them that they’re doing great and what they’re doing, even though you can’t necessarily help a lot with the specifics.
Kurt Lewis (40:02):
Mm – thanks Nick for your input. Now Mav, did you want to answer this question?
Yeah, so look, I think participating in the support groups offered by NOFASD, I think it was very, very helpful. You know, and being honest, obviously as a dad you tend to be the minority, you know, because it’s mothers that tend to be a lot more involved, sadly. And hopefully this will change over time and, and more dads will be more involved. But I think overall it was incredibly helpful because you know, obviously as you go through the very difficult process of first of all finding out possible causes for the, you know, developmental issues that your child experiences, and then eventually getting a diagnosis, it takes quite a bit of time to find your feet if you like. It takes a bit of time to build your confidence, you know, as a parent with this newfound knowledge, and of the difficulties that your child is experiencing.
So, participating in a group, I found that it’s very helpful first of all to have people with lived experiences that, that are going through the same journey as you are at the same time, or have gone through in the past. It’s good to know that you’re doing some things right, and then you know, that validation helps build your confidence and you know, helps you obviously supports you know, your child better as well as ask questions and share, you know, your experience and your difficulties. Even if there is no easy answers, it’s, it’s very helpful to share and see what other people think and learn from their experiences. So overall I highly recommend it. It was very, very helpful.
Kurt Lewis (41:38):
Was it helpful, kind of bouncing your problems and your experiences off other parents and carers? Um, if you had a problem in a certain area, I imagine they would be experiencing very similar things, uh, with their children.
Yeah, well it was helpful in that way too. Yes, absolutely. It was helpful to be able to ask other people how they dealt with a particular situation and that is quite frankly a lot of the times half the battle coming up with helpful suggestions. Not every solution will work in, in your own circumstances, but even having something to try, even if it doesn’t work, it’s a big help. So yes, absolutely being able to ask questions around what you’re going through, it’s very helpful. you know, as well as sharing and connecting with people and, and having that understanding because of – FASD, even though it’s actually incredibly common as a disability unfortunately, and it’s a major issue in our society, it’s very hard to actually connect and find other carers, other parents that go through the same journey. And that connection is incredibly helpful because you feel like you belong with a group of people that yes, we’re affected by this, but we’re not defined by this, and we want to do what is best for our children.
Kurt Lewis (42:50):
Thank you, Mav. Now David, did you want to round us out?
Sure. Um, I joined the support group in February 2022. I guess I did join as someone much less experienced than most of the other participants, but it’s been absolutely wonderful really for increasing my knowledge and strategies and I got an incredible example of this only four months later, where I had a, a family tragedy at home .Very briefly that was – as I said, my wife and step kids are all from England and because of COVID they hadn’t seen their grandmother for a good while. She’d been over twice before, but obviously during lockdowns she wasn’t able to come over. Well, she did come over and two days after arriving passed away at our house, and in fact Jody found her, didn’t realise she was actually had passed at that stage, um, but came to me and said, you know, grandma is still asleep after falling down last night.
So, you can imagine what sort of scene that was, and what sort of happening that was. And the end result in all the organisation was, that just my wife was going to go back with her mother to England and look after the funeral arrangements, and I was left with the three step kids back in Sydney, including Jody who’d been through this tumultuous event. And to jump back to the support group, I’d been through the support group, got the sort of foundation knowledge and lots of discussion and. from a, a point of not much experience, I still have not much experience, but I was given as Christine and Julie were just excellent at delivering that course. And some of the information I got, I was able to directly apply to that situation. And to say that I was able to take Jody on my own for two weeks with her mother overseas, after that event, just spoke to what that support group had done for me at that stage, strategies, just how I would look at that fortnight and get through it as best I could.
Success seems sort of the wrong word, but I’d say there’s no way it would’ve gone so well in the circumstances if I hadn’t been attending that support group. And once that, the normal online course was over, our group has stayed together and still meet once a month and it’s continued to be just fantastic for me, and in broadening my sort of knowledge and experience and my ability to live with Jody. So yeah, I couldn’t speak more highly of it, I couldn’t speak more highly of Christine and Julie’s delivery of that course and, and how helpful it’s been to me.
Kurt Lewis (45:38):
Well, it sounds like it helps you, especially during a particularly difficult time, also going through somewhat of a traumatic experience in terms of, you know, seeing that, and you being on kind of on your own there. So, glad that those support groups were able to help provide you with the knowledge you needed to get through that. So, it really sounds a very difficult time in the family.
Yeah, well like I say, I’d only been attending the support group for what was four months since I first attended. So, I was still at a very early stage, but it gave me some really basics, you know, good stuff that allowed me to strategise how I would just manage that time, because Jody was going to school throughout that. Plus, I had the two step boys to manage as well. I mean they were fairly low maintenance, I have to say. They were great, but it was a delicate time for Jody, put it that way. And it could have gone horribly wrong with her mother halfway around the world sort of thing, but it didn’t, and I’ve no doubt that the fact that I was in that support group, averted, you know, any sort of major problems for me.
Kurt Lewis (46:44):
Thanks David. What are your hopes for the future in terms of your children? Are there any particular goals you hope to reach? Mav, do you want to take that one question first?
I think what I’d like to see my kids, and that’s my like long-term game if you like, that’s the long term journey and objective is, to hopefully reach adulthood, you know, become adults and have the strongest possible self-esteem or confidence, feel good about themselves and be kind people that, you know, have the ability to make some good decisions for themselves and hopefully for others that are impacted by their decisions. So, for me, the goal that we’re working towards is all about that self-esteem, that confidence, you know, being kind and, and trying and, and – build that capacity to make, uh, good decisions.
Kurt Lewis (47:32):
Thank you, Mav. Nick,
I’m incredibly hopeful for the future. I think there’s obviously a lot of research being done, a lot of growth and supports. There’s a long way to go, but there is support out there and I guess we have seen that if you keep asking questions, you sort of keep knocking on the doors, you can find the right supports that enable your children to live a happy, healthy, productive life. And our oldest is, is now 17 and we can just see the glimmers of hope where there’s just been consistent parenting and he is starting to get it in some areas, and he is hopeful for what he can do in the future. And I think with the right support around him, he’ll be able to achieve some of those goals. So, I guess I’d just encourage people to keep going, if you keep putting the right support in place and the right steps that these kids can get there.
Kurt Lewis (48:23):
Thank you for that Nick. David, would you like to take that question?
Yeah, I guess I agree with both what Mav and Nick say, what Mav said about, you know, wanting her to get to adulthood. I’d like to see her get there having an enjoyable and stimulating life, knowing that she’s loved and secure, able to make decisions for herself. Although I think she’ll probably always need some sort of direction there. Just able to live a life that gives her something other than just battles, that gives her the ability to sort of take something from life and enjoy it, I suppose, and to stay out of trouble in her teenage years. I’d like that to be part of the future, but um, we see that as one that’s going to require a fair bit of work, I think.
Kurt Lewis (49:05):
Just for all the listeners who may be listening, everyone nodded at that particular Davd’s point. Everyone was nodding at that particular point. It was very encouraging to see. Sorry to interrupt you, David, please did you want to finish it up?
No, I think that’s it. When Mav was talking and Nick as well, but especially Mav, I, I found myself sort of agreeing with everything he was saying, so if I could, uh, repeat what he said and add my bit that that would do for me. <laugh>
Kurt Lewis (49:30):
Honestly, I’d like to thank you all for coming on the podcast here today and just, uh, chatting with me about these very important points and not just for me as well as our listeners, particularly any parents who might be listening and, you know, might find hope in you, your guys’ stories, your words of wisdom here today. So, thank you David. Thank you, Nick. And thank you Mav for contributing to this podcast.
Pleasure. Thank you.
Frances Price (49:57):
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