Key points about the Families Linking with Families program:
– It is a structured and guided 7-week online support group which is led by trained facilitators, each of whom is a parent or caregiver for an individual with FASD.
The main benefits include:
– Enabling caregivers to connect with others who are going through similar experiences, thereby lessening the sense of loneliness experienced by many carers.
– Providing a safe and confidential space for caregivers to share their specific situation and challenges without judgement
– Increasing caregiver knowledge about FASD, effective parenting/caregiving approaches and FASD-informed strategies.
– Empowering caregivers and building their resilience.
The online format makes the program accessible across Australia, even for those in remote areas. The program is delivered several times a year and is refined based on participant feedback and issues of concern tabled during meetings. Australians interested in participating in a future support group should contact the NOFASD Australia helpline on 1800 860 613 or visit our website through this link to express interest.
The research article discussed in this episode is: “An Australian Online Training and Support Program for Caregivers of Children and Youth with Fetal Alcohol Spectrum Disorder: Families Linking with Families” by Anita Gibbs, Julie Flanagan and Louise Gray is freely accessible. It’s an open access article in the Journal of Intellectual and Developmental Disability. The full article can be read at: https://doi.org/10.3109/13668250.2023.2271757
For more information about FASD, please go to: https://www.nofasd.org.au/
Producers: Kurt Lewis, Julie Flanagan and Louise Gray
Narrator: Frances Price
Interviewer: Kurt Lewis
Interviewees: Professor Anita Gibbs & Julie Flanagan
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 interviewees. 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.
Transcript
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.
NOFASD Australia acknowledges and pays respect to the past, present, and future traditional custodians and elders of this nation and the continuation of cultural, spiritual and educational practices of Aboriginal and Torres Strait Islander peoples.
(01:25):
Today’s episode features an interview about one of the services developed by NOFASD to provide effective support, and advice about useful strategies, to parents and carers who are supporting a young person with FASD – whether this is already confirmed by a formal diagnosis of FASD, or considered very likely due to the particular symptoms that are evident in the young person..
At the time of recording this episode, NOFASD’s Families Linking with Families support group program had been operating for just over four years.
Today’s guests have been involved with this program from the very beginning, so our podcast host, Kurt Lewis, decided that it really was high time for him to sit down with both of them to discuss the specifics of this free service offered by NOFASD and available to caregivers living in Australia..
In today’s discussions you’ll find out from those involved in the development and the ongoing delivery of this initiative, exactly what factors have seen this program receive such resounding endorsement from participants as to the value they’ve gained from joining one of NOFASD’s online support groups.
Over to you now to Kurt
Kurt Lewis (02:51):
Welcome, welcome everyone to this episode of Pregnancy, Alcohol and FASD: The Surprising Reality. I’m your host, the friendly neighborhood podcaster, Kurt Lewis. Today I am discussing NOFASD’s premier support program called Families Linking with Families. Joining to discuss this topic are Professor Anita Gibbs from the University of Otago and Julie Flanagan, the National Projects and Communications Manager from NOFASD Australia. Welcome to you both. I’m very glad to have you both on. I’ve had one of you on before, Julie’s a newcomer, but she’s quite familiar with the podcast. I might as well just crack on with it guys, if you don’t mind, I’ll just ask the first question.
Anita. Julie, you are both joint authors in a recent research article published in the Journal of Intellectual and Developmental Disability. The article is based on your experiences creating and running a program that’s called Families Linking With Families. Could you please explain to our listeners what is involved with Families Linking with Families program? Anita, did you want to take us off with this one?
Professor Anita Gibbs (04:03):
Kia ora koutou, ko Anita Gibbs tōku ingoa, Nō Ingarangi ahau, Engari kei Ōtepoti tōku kainga. I’m Anita Gibbs and I’m speaking to you from Dunedin in New Zealand and greeted you in Maori. Well, basically most of your viewers will know that I’m a caregiver now young adults with FASD. I’m a researcher at Otago and I teach in the area of neuro-disabilities as well. In 2017, I was meeting caregivers back in my hometown, like myself as a caregiver were identifying a complete lack of bespoke support for caregivers. I got very frustrated as kind of researcher and as a petitioner and a caregiver and I thought, well, I’ll develop something. And I constructed materials from evidence-based research around supporting caregivers, what we knew in terms of what would be helpful for FASD and developed a wee package that I delivered face-to-face over seven or so weeks to caregivers here in Ōtepoti Dunedin, and evaluated it briefly by interviewing people and got very positive feedback.
(05:03):
Then I presented that at the 2018 FASD Conference in Perth and Louise, the wonderful Louise Gray, former Chief Executive Officer of NOFASD, but still very much involved with Families Linking with Families, connected with me and said, “Hey, do you know perhaps we could do an online caregiver support group, pilot it with NOFASD?” And I said, “Ooh, could be interesting”, but hey, that’s what we did with the lovely Sophie Harrington who’s obviously now the Acting Chief Executive of NOFASD, and that pilot was incredibly successful. So we wrote that up the GOWI publication, G-O-W-I publication and then Louise and others beavered away to get funding and so on, grant applications, and eventually we launched Families Linking with Families – and obviously at that point, and of course Kurt, you were involved right at the outset with a lot of this stuff. Julie came on board as the project manager.
(05:52):
You could say the rest is history, but we’ll talk about what that looks like. But certainly for three good year or more, Julie, you’ll be able to correct me if I’m wrong, the programs known as Families Linking with Families have been running, and I mean the core essence of Families Linking with Families is to help caregivers increase their knowledge of FASD so they can help their children and young people and in some cases young adults, help them improve their lives and increase their skills. But they do that with members of the group. The members of the group share positive strategies in their parenting and caregiving roles. They help each other in a peer-to-peer way, which is really quite a core component of FLwF and we run that seven week digital support FASD group and it was great that we could write it up in that publication. So yeah, that’s the basics I guess.
Thank you, Anita. That was an excellent answer. Julie, anything to add to that?
Kurt Lewis (06:37):
Julie Flanagan (06:42):
I think Anita’s covered a lot there, but I might just mention that the first pilot was run in 2019 as Anita said, GOWI – that was before I joined NOFASD. I think it was very appropriately named GOWI – that was short for Getting On With it. And the reason it was called that is that it showed the understanding within NOFASD, there was definitely a lack of services and the idea of being able to provide those services online to people across the country, wherever they were, meant that it opened up opportunities to provide that support that had not been there before, because Australia is a massive continent and there are people with FASD located all over Australia, as we know. And the success of that GOWI program led to the funding for the now Families Linking with Families program, which is a seven-week program, 90 minutes online once a week for seven weeks, and we can delve into a little more of the specifics of how that pans out and what it means for the participants, I think Kurt, as you continue to chat with us.
Kurt Lewis (07:54):
Oh, definitely. So it’s interesting, it’s not only just a support group online, but it’s also kind of a sharing of knowledge, sharing of strategies, a sharing of an education. Any listeners currently listening, both Julie and Anita are very nodding their head very vigorously at my words. Moving on, Anita, you have been in the FASD space for some time. I know eager listeners would probably have heard your podcast interview previously, or you gave a very interesting interview with me about your experiences in the FASD space and you have a rather unique perspective being both a carer of a young person with FASD. and also a university academic researching the topic. From your perspective, what are the main benefits of an online support group such as this?
Professor Anita Gibbs (08:43):
Yes, Kurt. Yeah, no, it feels like it’s been a long journey in many ways. Those of us that are caregivers, it’s a lifelong journey. Things change, but some things don’t. Good thing about Families Linking with Families I guess, is that it’s a group based on reasonable evidence that’s from previous publications in North America, Australia, UK, some now from New Zealand, that we refer back to, and we amend materials sometimes accordingly, but it’s also expert consensus. So, we are listening to people who’ve been working in the field for a long time, but as far as I’m concerned, the real expertise is the recognition of the expertise of the caregivers. So it’s the program by caregivers for caregivers and they’re really very much at the core, in terms of the course is designed to enable positive and supportive relationships with one another. So caregivers supporting each other. A lot of them carry on contact with each other post the official seven weeks – various ways, whether that’s via social media, or you know NOFASD has structured in some monthly post-main course support groups as well.
(09:44):
The other thing is, parents get it, other parents who are like-minded and going through that similar lived experience, they absolutely get it. So they allow those within, and attending the groups to kind of like, just be themselves and they don’t pry, they don’t demand explanations forcrazy things that happen in the homes. And really we’ve heard some crazy stories over the years. Some of those people also that have done the course then go on to become the facilitators. They become those parent coaches as we call them. So that’s exciting. And we always have two facilitators, which I really like and facilitators who are very experienced. They’ve been through it, they know the deal, they totally get it. I mean, another benefit for me, hugely, having done the Dunedin one kind of on my own somewhat, without admin or other support, is of course that NOFASD has dedicated resources to project manage these courses and you’ve got the wonderful Julie, and your good self.
(10:39):
You’ve always got one of you, or both, at the sessions, there’s the pre preparation stuff, it’s really critical. There’s the tech support that’s really critical. This program would not be as successful without that – it’s really, really pivotal. So dedicated tech and project management resources utterly, the evaluation so that people are really positive about the program. I mean the online flexibility allows easy access. People get choice about the times. They can do a daytime or an evening time or whatever. They like the fact that they can attend the course where they like, I mean as you well know, we’ve had people in the comfort of their own homes, but people have gone to their local swimming pool whilst the kids are doing their after-school activity, their library, they’ve used offices. The flexibility is really, really important. I think that makes it more accessible and caregivers consistently say that they’re learning new things all the time and that their knowledge is valued. So it’s not just the facilitators if you like, sharing their knowledge, everyone sharing their knowledge and the facilitators consistently say that they’re learning stuff, even if they’re very experienced. So I like the fact that caregivers utterly feel seen and heard and have a lot of kind of ownership, I guess, of the program.
Kurt Lewis (11:50):
Fascinating. So it’s interesting you say because FASD is very much a spectrum-based disorder. No one case of FASD ever has the same quirk as this put it. It’s interesting that you can pool your resources, maybe come up with strategies that no one’s ever thought of or together kind of thing. It’s interesting. Easily pool your knowledge in such a group. No one size fits all when it comes to FASD. Julie, you have been behind the scenes to help coordinate these groups from the beginning of Families Linking with Families program. How have you seen these groups benefit the parents, benefit the carers of the people with FASD? How have you seen the benefit in these?
Julie Flanagan (12:32):
Yes, you’re right Kurt. I have been with the program from the beginning and I will say it’s been my deepest learning about FASD, on top of all the research articles I’ve read. When I first joined the organisation in November 2020, and the first Families Linking with Families group was offered in February 2021. So, we’ve now offered this program for four years. Now overwhelmingly, we’ve had wonderful feedback from parents and carers in the way they perceive the value of the program and their learning. But overwhelmingly the number one thing that they’ll say in their anonymous feedback, so is that feeling they’re not alone, knowing that others are going through the same type of challenges. Now that sounds such a simple thing to say, but what I think the wider community don’t understand is how isolating it can be for a family where they’re caring for one or more children with FASD in terms of the way the symptoms display and how challenging they can be.
(13:49):
And as you’ve both touched on, how different they can be, so often a parent or caregiver would just not feel comfortable sharing something because they think no one else could understand this, or I don’t feel comfortable inviting someone into my home because of the way that a FASD symptom displays. So, things that sound quite simple on paper. So, just a little example of the way FASD might play out. I’ve heard of many young people whose bedrooms are an absolute chaotic mess – because parents have shared photos. I’m not talking about just an untidy room. This is the child or young person simply can’t function potentially unless every cupboard door is open, drawers are opened, contents are strewn all over the floor, no perceivable order, it doesn’t matter if there’s something they value in the muddle, their brain is wired in a way that even if somebody comes in and tidies the room and it’s pristine, they get home from school and within 15 minutes it’s a muddle, a massive muddle.
(15:12):
I’ve heard more than one parent describe it as like a tornado that’s just struck the room. Alternately, some young people, some individuals with FASD can only function when things are stripped back to the bare minimum with minimal objects in the room, minimal color, minimal things that distract. So there’s two total opposite ends of the spectrum. And people who might come into a family home might think, wow, there’s a very empty bedroom. This is a deprived child. They’ve got no things in the room, or look into a bedroom that’s just had the tornado through it and think, wow, this child needs a bit of structure. There’s a lack of discipline in this family. The relief that a parent and caregivers feel when they share something like that in a group where they feel safe to share, and hear somebody else say, oh yeah, I get it.
(16:08):
Let me show you a photo of my child’s room next week. It’s just the same. It’s inestimable and they realiSe that they’re not doing something wrong, and they can start to find a way to work around that. I’ve had parents, one in particular comes to mind who shared two photos of her two children’s room. One was the tornado, one was pristine and she had in her home the children that were the opposite ends of the spectrum. So I think knowing how things can translate into family living and the pressures that might place on the family, or on their contact with extended family or friends, it’s a huge value for the caregivers and it gives them some, I think confidence in moving forward and finding the strategies that are the best fit for their child, and that are going to lead to positive outcomes rather than trying to fight something that is actually an indication of the brain injury and the way their child’s brain is wired.
Kurt Lewis (17:13):
Thank you for that, Julie, that your point about you’ve learned a lot from these groups, the Families Linking with Families program. I’m wondering if either of you has learned anything surprising, or new, as a result of being involved in the delivery of this group? Julie, would you mind if I go to you first for this question?
Julie Flanagan (17:33):
No, that’s fine, Kurt, and I think the reality is there’s a potential in every group to be learning something new and surprising. And I hear that also from very experienced parents and caregivers, some of whom have said things like, I really joined the group mainly to connect with other parents, similar experiences. I didn’t think I could learn anything new, but I have, I’ve heard about some alternate strategies that might help. So, from that perspective, the sharing of lived experience does provide those insights. I think, probably one of the most surprising things, and I have to say, one of the most confronting things is the young age that some of the really challenging and confronting symptoms can manifest, particularly on issues like meltdowns and aggression that’s directed at parents and caregivers, and I’ve heard of that from children as young as three, who in a meltdown, when they are sort of in a sensory overload and almost like outside themselves, seem to develop almost superhuman strength in terms of the chaos or the violence that they can start to manifest.
(18:52):
And then, either how quickly that can dissipate, or the length of time it can take to dissipate. And I think, and I’d read about it in numerous research articles, but hearing parents and caregivers share those stories and having to navigate that, it’s been surprising and confronting, and I think it’s an issue we really need to, really alert the wider community to, because we see this now, we hear this in schools if they don’t have supports that are appropriate for neurodiverse children who can go into sensory overload and aren’t supported in those early stages. Sadly, I read stories in the newspapers and things that are described – and they often will describe a child with complex needs, or they may mention a mishmash of various other diagnoses, Autism, ADHD – they might say and learning difficulties. They often don’t mention FASD, but they might say, but nothing seems to be consistent with these diagnoses. So I think we need to get wider community understanding of FASD and the diverse ways that it can present, so that more appropriate supports are not just used by parents and caregivers in the family home, but in the wider community, which is going to benefit everyone from more positive outcomes.
Kurt Lewis (20:30):
Yeah, thank you for that, Julie. That’s an interesting point you bring up. Anita, did you want to cover this question?
Professor Anita Gibbs (20:36):
Yeah, sure. I mean, I think Julie’s identified a lot of aspects of what’s going on for people, but I do think the sheer kind of tenacity and resilience and courage of caregivers really comes through when people feel safe to be able to share those stories, which for most people, just for those listening, I’m kind of putting my hands over my ears. Most people don’t want to go down there. It’s almost too dark, but we need to go down there and FWF goes down there. I mean, it allows people, and also from that, when they’re able to see some pretty heavy-duty stuff and that’s why you need good facilitators to kind of manage that really carefully and supportively and inclusively, but also to lift the mood, you know to at least to provide supports during those times. And sometimes that happens post a session for example. There might be a follow-up call, but essentially caregivers feel safe, feel safe to share some of this stuff and thereby doing so put it out there in a way that people go, yes, what can we do?
(21:32):
SThe content- you know we try to deal with systems – we know about systemic misunderstanding, intolerance and abuse. So I think through the program we try to actually acknowledge that. So, because a lot of the time we’re wanting environmental supports and we just can’t get those changed or happening or people can’t get support from the NDIS scheme or whatever it is, they’re frustrated and professionals aren’t listening to them, and therefore this group is possibly the only space where people will take them seriously. So I’ve been amazed at the resilience and strength because sometimes there aren’t actually any immediate solutions either, and people have got to go back to the same things that they’re sharing on a daily basis and somehow still have hope and resilience. So, I’m always struck, and impressed, by people’s courage and resilience. Obviously people talk about increased skills as they participate. I find that pleasing and rewarding, cause it makes me think, oh yes, it’s actually doing some good because you always worry about things like this, is it actually helping people? And it gives you perspective in your own circumstances. And it reminds me because again, those of you who know my story know I have some incredibly challenging difficult circumstances, but when I come together with a group of wonderful caregivers, it lifts my spirits and it gives me perspective on my own circumstances. So I find that helpful over the period that I’ve been involved with this program.
Kurt Lewis (22:49):
Incredible. Julie, did you want to add anything to that?
Julie Flanagan (22:52):
I just realised there was something that I hadn’t mentioned, and I think it comes out very strongly in a number of the programs, is the incredible value of early interventions. When we hear parents and caregivers who’ve been fortunate enough to get a FASD diagnosis early, or recognising that the child has all the indicators that they potentially have FASD, and while they’re on the sometimes lengthy journey towards diagnosis, decide to start implementing FASD-informed supports, the great difference that makes, and I think when other parents and caregivers who are further down the path hear from somebody about the difference that’s made and realise they can implement some of those strategies and it can make a difference, as Anita says, that can be very positive and uplifting. So while there are potentially huge challenges involved in the condition, the support groups aren’t a dark place. I’ve seen people come online and at the start of the session say they’ve had a terrible week and they’re close to tears, and by the end of the session smiling and saying, I feel empowered to go on now, I’ve been able to share the situation with others. I’ve got a few new ideas in my toolkit that might help, and I’m ready for the week ahead.
Kurt Lewis (24:17):
That’s a very good point. That’s a very good point, Julie. Now it’s going to the next point in regards to sharing a question for both of you. Does being an online support group detract from the benefits you’ve mentioned? I mean during the time of COVID lockdowns, many events were moved to be presented in an online format, but do you think it makes sense in a post-COVID world to continue offering this online, or do you think that an in-person delivery of the support group would be more beneficial? I’m going to ask Anita this question first if that’s okay.
Professor Anita Gibbs (24:57):
Honestly, obviously I teach at university , we do a lot of mixed, hybrid, face-to-face and online. I actually don’t think being online has detracted from the benefits that we’ve been talking about because we do get that consistent feedback. You know, we ask people, how has it benefited you? What would you like to see change? And they usually don’t say a change to the digital format. People tell us the program is successful. People share openly, as we’ve said at length. They don’t hold back, they trust the other participants. That could be engendered in a face-to-face support group, but it works fine for the digital group. People do have ongoing relationships with each other. I mean, the only downside of online potentially is the occasional tech difficulty, and we’ve all been booted out at some point, whether we’ve been a facilitator or a participant. And we just get back in, the point is that whoever’s managing the evening session is easily able to let people back in or to provide resources if people miss stuff because they basically got booted out and couldn’t come back. And then the issue for people who can’t get a half decent phone or who haven’t got access to a computer, they may prefer face-to-face, but face-to-face has its issue of possibly being more expensive, not necessarily straightforward to run. It doesn’t mean that face-to-face can’t work because we’ve obviously done those in New Zealand and they do work. It’s just a case of what’s going to work in the circumstances with the pragmatic reasoning around resources that we’ve got right now.
Kurt Lewis (26:16):
That’s an excellent point there, Anita. Very excellent point. Julie, what do you think
Julie Flanagan (26:21):
Opportunities for people to connect face to face are a good thing, but the reality of any busy parent’s life, let alone a parent who is dealing with a child with the complex needs of FASD, which often means a number of appointments with allied health professionals to be fed into the family’s weekly schedule. The idea of just being able to be at home or be at work and take 90 minutes online, rather than having to factor in travel time to go somewhere, it just makes it so much more flexible. And, we’ve certainly had parents over the course of all the programs we’ve offered to date, who’ve joined from unusual locations. I recall a parent who was joining on her phone while parked in her car watching a child’s sporting match, or sports carnival, so she was able to still participate. The child knew she was still at the carnival and would be there to watch when she was in the designated races.
(27:26):
There’ve been parents who’ve joined while waiting for an appointment in a clinic, and I might just say, I’m not going to be able to talk today because I’m in the waiting room, but I still want to listen. And, the other thing is I think the safety of joining online particularly first up, I know there’s parents who sort of are thinking maybe my child’s behaviour is more extreme than everyone else. I haven’t heard of the sorts of behaviours, the idea to go along and meet face to face, in a physical environment first time if you are thinking I’m the outlier of the group, is a little potentially a little more frightening or confronting for some. Whereas joining online, there’s a little bit of that feeling of I’m safe, I’m in my own home environment and I can get to know the others online. I’ve had a few parents who’ve said to me, they hesitated to join a support group.
(28:27):
They didn’t know, quote, if they were ‘a support group kind of person’. And then, by the end, they’re like, I wish I’d joined an earlier group because I see the value. And I guess, it’s a support group, but it’s also designed at providing information and sharing information. It’s a unique format and it works online. It fits in with a busy lifestyle. We’ve certainly had some carers in groups who’ve found they live not far away from each other and have been able to make time to connect face-to-face, but even they would say that’s not something they could do every week. That’s something they do intermittently, as a result of connecting in the support groups. But personally, I think the online is the way to go to connect to as many possible parents and carers. It doesn’t mean there might never be some face-to-face engagement, but it wouldn’t supplant or take over from Families Linking with Families online.
Kurt Lewis (29:30):
Those are some very excellent points, Julie, especially in a country like Australia, it’s so wide and traveling to one place can be very difficult for most parents and carers with kids with FASD. A few final questions for you both. The first is, do you see Families Linking with Families as an ongoing program? Are you envisioning any changes to the program in the future? I understand that this is only open for residents in Australia, sorry to our overseas listeners, but if anyone in Australia is interested in joining this program, how should they go about expressing interest? I think Julie will have a lot of interesting points to put. So I think I’ll go to Anita first and save Julie for last if everyone’s okay with that. Anita, would you like to answer that question first?
Professor Anita Gibbs (30:18):
I think really Families Linking with Families can carry on as it is, as well as developing. You’ve got to be able to move things forward and we try to do that quite regularly, cause we have a steering group that meets regularly over the course of each year, and so we do try to listen to feedback. We already are developing options you know in a sense for basic and more advanced, and a potential men’s version is being explored. And obviously in the future it’d be great to see perhaps an Aboriginal caregivers only, option being available. I mean, the material is being tweaked and that more Australian resources get added in each year and it’s being made more accessible, stroke readable because the first versions had a bit more of Anita’s academic hat on, which isn’t always as accessible as it ought to be. So, it’s great to see those developments. I suppose just the final thing for those people who want to basically read more, the article that we’ve written, which is entitled :”An Australian Online Training and Support Program for Caregivers of Children and Youth with Fetal Alcohol Spectrum Disorder: Families Linking with Families”. is freely accessible. It’s an open access article in the Journal of Intellectual and Developmental Disability, so people can actually read details of that and get it for free.
Kurt Lewis (31:27):
Promise our listeners that it will be made available if you check the show notes below, it’ll be there for you to read in full. Thank you for that Anita. Julie, the same question?
Julie Flanagan (31:38):
Yes, so first of all, if people resident in Australia are interested now in putting their name forward for participating in the program, that’s easily done. You can ring our national FASD Helpline on 1 800 860 613 and indicate that you’re interested in receiving more information and you’ll be added to the list to be sent information. And I do that prior to each group, so people know what the schedule is, and the groups do vary. We’ll offer daytime groups and evening groups and we try to vary those. Although obviously we need to work with the availability of our facilitators. We have a lead facilitator and a co-facilitator, so I check-in that they’re available and confirm the schedule. But absolutely, if people are on that list and the first offering doesn’t suit them, they’ll be notified about future offerings If then they want to just go online on our website, on the “Contact Us” tab, they can indicate they’re interested in Families Linking with Families.
(32:45):
Just while I mention the Helpline, that’s certainly something we mention in the Families Linking with Families sessions, particularly if some of the participants have questions that would require a little more research to answer perhaps about particularly targeted resources in an area where they’re living. That is something that’s not able to be immediately answered in the session. So that Helpline is always available. It’s seven days a week, I believe, in fact, well, certainly at the time I speak this is accurate, maybe by the time the podcast will be released, things might’ve changed, but I believe it’s actually the only such program in the world, and Australia’s the only country that runs a Helpline that’s available to anyone in Australia to call and seek advice or talk, whether they’re looking for advice on diagnosis, or support structures, or particular issues. So it’s a great service. And of course it means sometimes people ring the Helpline and they’re referred to Families Linking with Families as the best way for them to connect and with other parents and carers and learn more about FASD.
(33:55):
I’d like to also mention, particularly, and Anita’s touched on this, but this program could not run without our trained parent coach facilitators who go through a training program developed by Anita. They all join a Families Linking with Families group first as a participant, and then they move up to be a co-facilitator, backing up the lead facilitator, and then they’re ready to take the driver’s seat. And each of them obviously brings a unique perspective of their own lived experience, which informs the groups. And overall, I would say the valuing of the lived experience of the facilitators and of the participants is the most valuable part of the program. It does not mean that research is not important because obviously particularly parents and caregivers who have been involved in care of someone with FASD for a long time, have been doing all the research they can, they’re passionate about getting the best outcome, but to see the lived experience, develop the knowledge, develop the understanding, develop the capacity and resilience of the caregivers, and to hear about those effects then for their child. Because over the seven weeks, parents will often by the end come back to us and say, I’ve implemented strategies X, Y, and Z, and I’m now seeing these outcomes, these improved outcomes. It’s an incredibly valuable program and from my perspective, it’s been a huge privilege to be part it, A huge privilege to hear people sharing their own stories and to learn from that. And I hope we can pay it forward for many, many years to come.
Kurt Lewis (35:47):
I hope so too, Julie. I hope so too. Just in case anyone has got a pen and madly trying to write down that Helpline, it is in the show notes below as well as a link to the NOFASD “Contact Us” page, so please feel free to look there if any Australian residents are interested in joining Families, Linking with Families program, and joining a group. Oh – Julie has one more thing to add to that.
Julie Flanagan (36:09):
Just want to mention that probably by the time this podcast will release, we will have run our first ‘males only’ Families Linking with Families group. And this is something, Kurt well done to you, because this was an idea you put forward after observing that we had not had many men join the support groups. We’ve had some, but not many. So Kurt suggested the idea of support groups that were led by two men as the facilitators and only for men in the groups in case that makes them feel a little more comfortable. I think often what we observe is that women are taking the lead in terms of maybe being the one who’s given up work to be the carer at home, because it can be a bit of an overwhelming task trying to work full-time and adequately care for children with FASD. Certainly carers do it, but it’s challenging and often one person ends up giving up their job, and that’s more often the women, and that often means the men might be feeling like they can’t be as involved because they aren’t seeing all the symptoms developed in their full array. So I think the idea of a males only support group is a great one, Kurt – and maybe we need to do another podcast down the track after you’ve done that first group to encourage more men, because we hope that will be an ongoing part of the program.
Kurt Lewis (37:39):
Definitely. Definitely. We could definitely look at that, doing that in the future. I just want to finish this podcast by thanking both Julie and Anita for coming on the show and talking about their journal article. I’d like to thank them so much for sharing their experience and wisdom about the Families Linking With Families program, and thank you, the listener for listening. So thank you everyone.
Professor Anita Gibbs (37:59):
Thank you.
Julie Flanagan (38:00):
Thanks, Kurt.
Frances Price (38:04):
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