Fostering with Chrysalis- Episode 001. FASD and Fostering
Fostering with Chrysalis is our new podcast! Which pretty much does what it says on the tin… it is all about ‘Fostering with Chrysalis’. This podcast is for everyone whether you are thinking of fostering, fostering already or just interested in the world of fostering. Join us for monthly topical chat on all things fostering. In episode 1 we were lucky enough to chat to the Goodwin family about their experiences of Foetal Alcohol Spectrum Disorder and fostering.
You can either listen along here or read the full transcript below.
FASD and Fostering (Podcast Transcript)
Chloe Tyas: Thank you for joining us for this very special episode of our podcast. Today, we are celebrating FASD awareness month. I’m here with Neal and Nicki, and we’re going to chat to them about their family and their son, Mikey. And how FASD presents in their world. Welcome Neal and Nicki. Thank you for joining me today to talk about FASD and your family.
So if you’d like to give, our listeners just a little brief introduction of family life with Mikey.
Nicki Goodwin: Thank you for having us great to be here and to have this opportunity to share something of our FASD experience. Mikey initially arrived with us in 2014. It was clear that he did have some difficulties, but we were unaware at that time that he actually had a diagnosis. Until his FASD diagnosis came to light when he moved schools, in January 2018. He moved from a mainstream to a special school. And as a result of that move, he was seen by the school doctor and as a result of conversations with her, she decided to do, a request into his medical history. It was found that he had actually been diagnosed with FASD as a young child, unfortunately it hadn’t followed him. So once we had that piece of information it did change a number of things.
Neal Goodwin: Just to add to that, I think we are very fortunate that, Mikey did have a diagnosis, because it’s not very easy to get a hold of a diagnosis.
What does FASD look like? Well it’s all to do with the executive functioning and the way the brain processes information. So for the most neurotypical people we process information that, we see, we hear, and then we can compute it to actions that we want to take. Somebody with FASD that is interrupted along the way. So the way that they see or hear, or even sense information is, disrupted. But it’s not a continuous disruption. It’s been very much likened to having a light bulb that, works intermittently sometimes it’s fully there. Sometimes it isn’t or, I think as I like to use, the idea. We are all very used to, zoom calls these days. And sometimes you can have a perfect zoom conversation and it works fine. Other times your constantly saying well you’re on mute or the signal is disrupted. That is, that’s very frustrating. And that is what it must be like for somebody with FASD that, that what you see and hear, doesn’t always compute in your mind and you can’t process information.
Nicki Goodwin: And along alongside this, somebody with an FASD brain is actually working 10 times faster, than a person whose brain is functioning reasonably normally. So huge a amount to be dealing with and other issues particularly that Mikey faces are around impulsivity. So we’ll do something and then realize potentially that he’s made a mistake or, is unable to kind of realize that he’s made a mistake because the impulsivity kicks in and he has very little control over it.
Neal Goodwin: And unfortunately, he won’t learn from that. So if we make a mistake we think, we think oh I learnt that I won’t do that again. He wouldn’t do that. He wouldn’t necessarily learn that mistake, which is where it comes in great difficulty with schools. This is because they work on a process that actually, you learn something then, you can build on that learning actually, he can’t do that, therefore you can’t really do consequences for him they don’t work. Because you have done that… this is going to happen, but then the next time it’s the same scenario, you can repeat it exactly the same. Cause the learning isn’t there. Cause the brain hasn’t computed it.
Nicki Goodwin: Poor memory and concentration tie in very much with what we’ve just been talking about. So we have to act very much as the external brain for Mikey. so, to enable him to succeed and be successful, even in everyday life, we have to help and support him in just for things like morning routine, what he needs to be able to get out of the house for work.
So we would be behind him and supporting him in actually making sure he’s got in his bag, what he needs and it’s coming up with different things and different strategies to help, him with that process so that he himself is actually being able to succeed and be successful. But has the support and the scaffolding and what is referred to in the FASD world as the external brain, supporting him to, actually be able to cope with his everyday life.
We see a lot of things such as hyperactivity. And particularly when he’s extremely anxious, anxiety plays a huge role, in his diagnosis. And we, always refer to it as incessant chatter when he’s really hyper and, highly anxious, then we get the incessant chatter. He has a lot of difficulties, and this is very common within people with FASD around sleeping, because of the way that their brains are wired , the serotonin in the brains, it comes into play more at night. So when the rest of us want to be asleep, somebody with FASD is potentially wide awake and unable to sleep. That’s something that isn’t easy to navigate and can be difficult at times. So now that Mikey is older, we do tend to, on the days when he doesn’t have any schedule or plans in the day, we do tend to let him sleep and wake up in his own time.
Even if that means not waking up to the middle of the afternoon, because it’s just an opportunity for his body to rest and, recuperate, because often he doesn’t get the same number of hours sleep that the likes of myself would do .
Eating is, a big issue. And again, it’s all connected to how the brain functions, and he doesn’t often know when he’s hungry. So again, if we are not there with the external brain to support him and to encourage him to eat, to make sure he has breakfast, lunch evening meal, then potentially he, wouldn’t eat. An example of that would be, if we go out somewhere , and are able to leave him at home and a meal time takes place when we are out. Very often, we would come home and find, even though we’ve left instructions, we’ve left something for him. To eat in the fridge, or the freezer that he can pull out. He’s just not thought about it. He’s just not hungry. Not thought about it. He hasn’t eaten that happens probably about 9 times out of 10.
So another big thing is, you see lots of behaviours. And one of the things that we had to learn on the journey and we are still learning is that these behaviours are not actually behaviours. They are symptoms of the FASD. And it’s trying really hard as the people that care for Mikey to constantly put yourself back into the mindset of these are symptoms. He’s not doing this on purpose. He’s not reacting in this way and being unkind. It is actually part of the FASD. That is a phrase that will be often say to one another it’s symptoms not behaviours.
Friends are a massive issue. It’s, it’s a very common part of the FASD world that these children, young people, adults really do struggle with friendships. Knowing how to actually maintain friendships and have friendships so again, that is, that’s a really, really difficult area. There’s not really any answers to it and at times it can be heart breaking to hear Mikey say, that he doesn’t have any friends. He says things like ‘will it be like this for the rest of my life?’ etc Potentially! Yes. This is always gonna be an issue for him. You just have to hope and pray that perhaps he will learn as he gets older and continues to mature how to navigate friendships so that he does experience that.
Neal Goodwin: One of the things that underpins that is, is not understanding banter and jokes. So, you know, lots of people sort of certainly, you know, he’s got parttime at McDonald’s. He won’t understand workplace banter. He won’t know that when somebody’s saying something that they’re not being serious. We would all most naturally take things as a joke when somebody said something, but he would think it was, on purpose. Then on the other side, he would say things thinking they were a joke when actually they’re not, and it’s sort of, it’s one, those things, you throw something into the conversation and it goes deadly silent because actually, that’s not very appropriate and we all know it’s not appropriate, but you know, it’s like, well, I’ve just made a joke, but he hasn’t made a joke. And, and so it becomes very difficult and very hard.
Nicki Goodwin: Age is another big factor. And one of the things, that they say when you are caring for a person with FASD and is very real, is often they are functioning, particularly their executive functioning and their processing and their memory concentration. At half their actual age. And that is very, very real.
Neal Goodwin: It can change from minute to minute.
Nicki Goodwin: Absolutely.
Neal Goodwin: Keep you on your on toes.
Nicki Goodwin: So we can talking to him, you know, about something and could be responding to as four, five year. Then half an hour later, we can be having another conversation and he could be responding to us as the 17 year old that he currently is. Half an hour later, we can be having another conversation and he’ll be responding as a primary school child. It really does depend on what you’re talking about, what the task might be, what the subject might be as to how, Mikey actually responds in terms of age appropriateness.
Another issue is differentiation. And by that we mean, if he goes into his room to find something, if there’s too many things on the table, even if the object that he’s looking for is sitting on the table, his brain is wired in such a way that he just can’t see that object. So very often we have to support him in, in finding things.
Neal Goodwin: Which as you might imagine makes life very exciting. It’s up there I know where it is…no it’s not…It is …I know I can find it and there it is right in the middle of the desk. He just can’t see it.
Nicki Goodwin: That’s a very real, everyday thing that we deal with.
Obsessions are very, very real. So, people with FASD will get stuck on something. That becomes ‘the thing’. That has very much been our experience with Mikey. So he has an obsession and that will take over and be his hot topic of conversation until next the obsession comes along and that has always been his pattern even before we knew about the FASD diagnosis. He’s always had it.
Neal Goodwin: It’s particularly musicals cause he’s mad on musical theatre.
So he sings a musical over and over and over and over again, and then move onto the next musical. And, you know, there’s other things as well, isn’t it? Yeah.
Nicki Goodwin: Yeah. And I think probably only other thing I’d add sort of that’s important is, that Mikey is always in the moment. He always in the moment as, we kind of referred to other things, he doesn’t remember what happened yesterday or what might be ahead. He’s literally, always in that moment. Isn’t he? And that can difficult to navigate at times.
Neal Goodwin: Because when you, got no real concept of the, the time, so you can tell the time, so you can say we’ve gotta be out by 10 30. You have to remind him sort of, okay. We we’re leaving in half an hour and he’s got, well, it’s fine. I got plenty time, but you haven’t got plenty time. And then, and that could be five minutes we are leaving. Yeah. But I’ve still got plenty time. No, you haven’t got plenty time. So that, that concept of how long five minutes is, or half an hour is, just not there. Which makes life very exciting when you trying to get ready for work or school or whatever.
Chloe Tyas: Thank you. That was really great to hear from you now I want to look at the symptoms versus behaviours. So obviously FASD is an invisible disability, but this can be quite challenging for lots of families and young people. So I just want to hear about your experiences of having a son with an invisible disability?
Nicki Goodwin: Yeah. I mean, as, you’ve indicated, it can be extremely challenging. I think our biggest emotion would probably be frustration.
Neal Goodwin: Frustration. Yeah. Sometimes you’re frustrated with him. Very often frustrated with other people who don’t see the disability and will say helpful things like. Well, all teenagers are like that. And you think, no, they’re not, I know some teenagers can be really, you know, tired and untidy and all the rest of it. But actually that’s not the same as having, a disability at all. I think if people could see, you know, there are some people with disabilities that have learning difficulties that it is visible and people can see. And so therefore they naturally make an allowance, accommodate for somebody. So for example, somebody who had downs syndrome as a learning disability, people will make allowances because they could see that, that this person looks different. But actually a lot of people, with FASD there’s isn’t that visible sign there isn’t, you know, they, haven’t got a sign around their head saying, oh, you know, I’ve got disability. Which makes it really difficult. Because you know, we try, sometimes we try and explain to people what it, what it’s like, how, how difficult it is for Mikey to process. And they won’t get it at all.
Fortunately, the school is in now is really good. Yeah, it’s a special school and they’ve got a real understanding. But prior to that, we’d have lots and lots of, conversations with teaching staff who couldn’t understand why. Yesterday, he was brilliant , he could do all of this And then today he can’t do the, the same.
Nicki Goodwin: And to be fair, that was pre us even being aware of the FASD. I mean that, that’s part of the school set up. Isn’t it. Now, the school knows they have an understanding that perhaps he, you know, as we adhered to earlier in the, the podcast that one day he can do something and the next day he can’t. And so, you know, particularly within the school setup and the academic setup, it is repeat, repeat, repeat, isn’t it? Yeah.
Neal Goodwin: I mean, what we found is helps is, is having routines, trying to stick to, a routine. Therefore, he can start getting into sort of the pattern of a routine. And a rhythm. And even then we still very often have to say everything have you cleaned your teeth. Oh, yes I have. Or no, I haven’t done yet. No. And, and so, and now that’s obviously that happens every single day, twice a day, but we still have to. Very often say, have you done this? And, and sort of trying to come up with different ways just to help, uh, and, and, and be that external brain. But we, still allowing him, particularly as he’s got older, the that level of independence to make his own decisions, but, uh, it’s sort of, and that’s quite difficult.
Nicki Goodwin: I think something else that’s very real for us is it’s been a very lonely journey. Yeah. Because people don’t get it. Don’t understand. And because Mikey can present in social settings, so incredibly well, and you need to be with him for a certain amount of time before you start seeing that there’s more to this young man than just how he presents in that, in that moment. It has been a struggle, hasn’t it?
Neal Goodwin: It has. Yeah.
Nicki Goodwin: It’s been a lot of grief and loss. You know, when we welcomed Mikey into the family, we had lots of, you know, hopes and dreams of how family life would be. So simple things like, you know, Neal before being a foster carer was , a baker for many, many years, loves being in the kitchen. So, you know, we had dreams of, you know, like family baking sessions. Mikey being able to help cooking and all that kind of thing, but it’s just not, not happened. Has it? No. And being outside in the garden, gardening is one of our, our great joys and we love being outside. And again, you know, sort of wanting to get Mikey involved with family life outside of the entertainment, things such as cinema and stuff like that, like washing the car, taking part in gardening activities in the garden. Just doing things as a family that are normal, everyday family life things. There’s a lot of those things that he’s not been able to do and participate in.
And then just milestones. Whereas in your typical child, would, you know, be reaching certain milestones at certain times, again, we haven’t had that experience with Mikey. So very often when we’re in the community and, you know, talking to other parents, quite often parents with their children and you’re, you know, you’re hearing them share the different experiences with their children. It’s just not able to connect with that because that’s not our experience with, with Mikey. So definitely a lot of grief and loss isn’t there. Yeah.
I think we’ve already said the lack of understanding. People not getting it and that, then links back into the frustration. The fact that I think for us, part of the experience is also that Mikey is hugely, hugely vulnerable for various reasons, not just cause of his FASD. And again, that ties in with the lack of understanding. That is a real struggle for us because people will kind of reflect back on us that we are being, you know, too concerned about him or worrying too much about him when actually we’re not, he’s generally, a very vulnerable young man. So it can be extremely concerning at times. Like emotionally it’s very demanding, isn’t it?
Neal Goodwin: It is. Yeah, it is.
Nicki Goodwin: We have to support one another, and have to provide consistency. I think we are very good at doing that, but it it’s hard work. Sometimes we have to kind of be thinking ahead and, you know, potentially what could happen in this scenario and what could happen in that scenario. It takes a lot of planning on our part. So for community, for holidays, for days out, they don’t just get booked. So they get considered planned thought about, risk assessed.
Yeah so, and I think the other thing that’s become more real to us in this last year is in a sense we are now the experts, because we’ve had access to lots of training and lots of input, which would come onto maybe in a bit. But , whereas before, as a network that supported Mikey, we were all kind of in a similar place now because we’ve had access to training. And been doing a lot of learning we’ve now suddenly become the experts. Yeah. So that’s now changed the dynamic and when we are needing help and support, it’s not easy because not it’s not available.
Neal Goodwin: No, not available. And obviously he’s approaching the time when most young people who in that care his stage will be, there’s certainly a lot of talk about independence and, Mikey can’t be as independent as some people think, and sort of, and, and it’s very hard to get that balance between allowing the independence and, but also knowing that you’re gonna have to be that scaffold for him. Because otherwise he just won’t make it. A lot of people don’t see that we don’t try and make it too obvious. Try and allow him to be successful. But in allowing him to be successful and seemingly independent, we have to do an awful lot behind the scenes to make it happen.
Chloe Tyas: I think you advocate really well for Mikey, within the wider network, but like you said, the supports not available to you, how frustrating that must be. Teacher training there is nothing on FASD. It is widely unknown in the education and social care networks. I think there’s a small section on the social work qualification, it could be classed as widely unknown.
Neal Goodwin: Some local authorities don’t even recognize FASD as, as being a disability with children.
Nicki Goodwin: Yeah. Which is just, it’s a very real, real disability. And it’s a lifelong disability and, people who are connected to the world of FASD, our friends at FASD hub Scotland, are working really, really hard. I know, Sheffield children’s hospital last year played part in, we attended a conference September time. Are doing a lot behind the scenes but it needs to be across the country. Local authorities, particularly, children’s services really do need to be getting on board with it and getting board with it at early stages. So that diagnosis are found and children are supported in the right way going through the system and the process, but it is incredibly, incredibly difficult and concerning as well once they get to, to adulthood because it’s an Invisible disability. We are very fortunate that, the network are all working really, really hard at the moment to, make sure that things are in place for Mikey as he becomes 18 in November and moves to adult services. But, as Neal said, there are some local authorities that do not recognize FASD, as a lifelong disability. So we are up against that but also, it’s the number of young people that do have FASD as they approach adulthood, basically get lost, and fall through the net. Unfortunately, statistics are not good, for these young people. Unfortunately, because they’re not understood because they’re not supported because they’re not helped. Crime, becomes very real. They can get into addictive habits very easily. There’s a huge number of people with FASD that have actually committed suicide because they just get completely lost in the system and are not cared in the way that they should be, which is incredibly sad. It all sounds doom and gloom, but that is the reality of the picture.
But, you know, we, we are aware there’s lots of people working hard to try and raise awareness. There’s been a paper recently, released through NICE, just last year. Which has brought some new guidelines in. Yeah.
Chloe Tyas: And the thing is to mention you are living proof actually with the right support these young people can be successful. It’s emotionally costly, but you have each other’s backs like you said, so it can be, it’s possible .
Neal Goodwin: Absolutely.
Chloe Tyas: And I think like you said about the wider network and the frustrations and the understanding, but you know, Mikey, you’ve seen the failures and the pitfalls and you don’t want. Repeat those again. So thinking about post 18, does Mikey understand his FASD and how it’ll affect his life?
Nicki Goodwin: I think Mikey’s found it very, very hard to actually accept that he actually has a disability. I think he does have some understanding and he has been supported in being able to understand his disability in a deeper way. I think right now it’s all about him accepting his disability. And there are times when he finds it easier to do that than others.
Neal Goodwin: There are. Yeah. Yeah.
Nicki Goodwin: So in terms of approaching. 18 he’s already using language. Like he wants to stay here because he knows he needs his support. And we’re really fortunate that we are being supported in, looking at, you know, shared life , post 18. So Mike can, can live here and continue to live here and continue to be supported.
So yeah, I’ll think it does depend on how he is and what we’re talking about at the time , it probably ties in with a lot of what we’ve said, really .
Chloe Tyas: Has he experienced any loss or grief thinking about things that might not be able to do?
Nicki Goodwin: Yeah. I, I definitely think that loss and grief is very real to Mikey. I mean, an example would be just this weekend actually. So Mikey’s, first love is musical theatre. He absolutely does anything musical theatre and will spend a lot of his time actually taking part in activities to do with musical theatre. He’s just taken part this last weekend in his final show with the theatre academy that he’s been with for the last seven years, because he’s approaching 18, it finishes at 18. There’s a whole group of them are seniors that finished on Saturday with the show. So at the end of the show, they were all very emotional. Mikey was able to be part of that. They, they were all very upset that it, you know, was the last show and their last season at triple threat. But in the car coming home, he said, this is so much harder for me, um, because they have a Snapchat group. But I can’t have Snapchat cause I have to keep myself safe. So the loss for him, wasn’t just the fact that he was going to be losing his Saturday activity, being part of the annual show and that group of friends that have literally the same group of people have been with him for the last seven years. They have Snapchat group, but because of his struggles around social media and keeping himself safe. He can’t have Snapchat. So that was very real to him on Saturday. This is even, he used the expression. This is even more painful because I can’t have Snapchat and be part of their group, cuz I got to keep myself safe and it was nice to hear him actually say… Cuz I’ve got to keep myself safe …it was like, it was sort of that recognition from him and understanding that that’s why he doesn’t have Snapchat. But still, you could really feel the loss for him and it’s how we can try and support him to try and maintain, you know, we talked about friendships early on in the podcast and he has, you know, maintained these friendships with this group of young people because they’ve seen each other every Saturday for the last seven years, during term time. They’ve not seen a lot of one another outside. But it’s been really important to him cuz he’s managed to maintain, those friendships for that time. Fortunately I’m friendly with two or three of the mums from that group of people. So, you know, I can have a chat with the mums and see if we can try encourage them to get together at some point for a social or something, just so that we can keep, keep the connection, not necessarily on a regular basis, but maybe once or twice a year or something like that. So that, cause they’re all talking about being friends for life, you know, but they’ve obviously got ways of doing that.
Chloe Tyas: So it’s about you finding new ways to support him?
Neal Goodwin: Absolutely. Absolutely. Yeah.
Chloe Tyas: So now I’d like to talk a little bit more about your journey to understanding FASD, and the support that you’ve received and how also you’ve used this knowledge, in your community, in Mikey’s network to help people understand Mikey better.
Nicki Goodwin: I think initially, when we found out about the diagnosis, we were hugely supported by the fostering service Chrysalis, and our fostering manager in particular did some research and got hold of, a really good book, all about FASD.
Neal Goodwin: Set out in very simple terms, wasn’t it? Yeah.
Nicki Goodwin: And basically that was really the starting point for us. Wasn’t it? That book.
Neal Goodwin: It was cuz you read through it and then it thought, oh yeah, that’s that describes that, describe that and as you went all way through it, it’s like 90% of that described, what Mikey was like and you thought. Argh so that’s what FASD looks like. And so the things that we’ve been seeing that we thought I don’t know were just him, actually we could see that was the disability.
Chloe Tyas: Did that help?
Neal Goodwin: Yeah. It helped enormous. Yeah. We, we even bought a copy for, his then social worker , to read because it was set out in very simple terms. Really was an eyeopener to actually, these are what the symptoms
Nicki Goodwin: We did communicate to the rest of network about it as well and recommend it as, as reading didn’t we?
Neal Goodwin: We did. Yeah.
Nicki Goodwin: This was just like a starting point for everybody. And then from that we did our own research, and came across, not entirely sure how, but it would’ve been through social media. A guy called Jeff Noble, who’s based in Canada and is a leading expert in the world of FASD and he runs, what’s called the caregiver kickstart training program.
So we approached Chrysalis and said, could we sign up for the next program that he was running? So this was back in 2019. so, Chrysalis is very kindly, agreed to us doing the course, and that was hugely beneficial. That there was six modules, lots of podcasts to listen to. And then as part of it, they provided in a weekly support group?
Neal Goodwin: Yeah. All done by, by zoom.
Nicki Goodwin: Opened the world of FASD. Up to us in terms of because Jeff was running it from Canada and running it via zoom, it was accessed by the world. So we had people from Israel there, people from America, Canada, obviously our friends from FASD hub Scotland. It did, it opened up the world of FASD to us in a, in a much greater way in terms of, you know, realizing that. It’s a disability that people are dealing with all over the world. So yes. So since we’ve done the course, we’ve tried to impart, a lot of what we learned to the people within the network, both the professional network and our support network.
So we talked a little bit earlier about being lonely, and how hard the journey is, but it’s a journey that we couldn’t do without the support network we do have, and we’ve got three couples in particular that are involved in Mikey’s world, who make it a whole lot easier. For us to do life with Mikey.
Neal Goodwin: Absolutely. Somebody you talk to someone who, who gets it, somebody who doesn’t say, oh, it’s just a teenage thing. It’ll be fine. And it’s like, well, no, it’s not just a teenage thing. So, that really, really helps.
Nicki Goodwin: That that’s made a huge difference to us. And obviously as we journeyed, any information that we’ve picked up that would be useful, like I say, to professional network, to our own support network, we’ve shared that information. We’ve signposted people to things we’ve shared people. I mean, Jeff does a whole section on schools and working with schools. So we were given permission to a access that folder and, and pass that on to, the school. There’s another section in the course for social workers. So again, we passed all that information on. To, both our social worker and Mikey’s social worker. The great thing is we still have access to that, that stuff, so we can go back to it. And that’s something potentially, that we do need to revisit.
Neal Goodwin: it is. Yeah.
Nicki Goodwin: Yeah, because you forget some stuff, don’t you?
Neal Goodwin: As he gets, older, things change , his symptoms all changed slightly and as it does with anybody.
Nicki Goodwin: Social media has been really key. So we are part of, FASD hub Scotland. We are really grateful to them because even though, we are here in Rotherham, South Yorkshire. We gate crash quite a lot of their stuff.
Neal Goodwin: We’re very south of Scotland. Haha.
Nicki Goodwin: They run a peer support group, once a, for night on a Tuesday evening. And that is quite specialized, because that is all people who have somebody within their world with FASD. So that is, is a really good thing . Unfortunately, we don’t get to tap into it enough. When we do tap into it, we’ve really, really enjoyed it. They’ve recently, created another space during the day, like a coffee morning type approach, all done on zoom, obviously. We managed to get to that the first of that one. And if they do that again, that would definitely be something like daytime is easier. Yeah, it is for us. Isn’t it. So, um, so yeah. Um, and then we’re still part of Jeff Noble’s network. So he does weekly podcast. Um, there’s a Facebook group where people are sharing on their, um, you know, obviously private Facebook group are sharing on their concerns issues. So we’ve all got the opportunity to support and encourage one another. If somebody’s got something to celebrate, we celebrate. If somebody’s having a challenge, we try and encourage to how they might be able to deal with that.
Um, and then the other thing I think] which is really, really important, we can’t stress enough. We were really, really fortunate when we started this journey to become part of the Chrysalis family. For those that don’t know, Chrysalis Consortium is a therapeutic fostering service. And right at the beginning of the journey, before we even knew about Mikey’s diagnosis, we were trained in, therapeutic parenting, in particular how to use something called PACE (model), which is playful, acceptance, curiosity and empathy. That has been absolutely key to how we engage with Mikey support Mikey work with Mikey. And even when we got to doing the caregivers kickstart program, we found a lot of the techniques that we had been using, particularly around PACE. We didn’t really need to change huge amount, all things. We, we found that the therapeutic parenting model works really, really well, for people with FASD maybe needs to be tweaked and adapted, but then that’s the whole thing with the therapeutic parenting, depending on the child as to how you use it. So, yeah, so I think that that’s been very key and it pays, it has absolutely. Yeah. So
Chloe Tyas: So with the PACE model, did you also feel like you weren’t starting right at the beginning that you kind of in a way you felt, oh, actually we already do some of this stuff with Mikey. We are already living in this way, so we just need to tweak it here. Did you find this comforting?
Neal Goodwin: It was, it, it was very comforting, it was because it was already kind of inbuilt into us to, to work with him in that. Then when we found out about the FASD it, it wasn’t like suddenly finding we’ve gotta have a completely different approach, because we didn’t need to, and I think it would’ve been a lot harder if we’ve suddenly found, oh, we need a complete different approach now. Uh, but actually it, it, it does, it was really.
Nicki Goodwin: So it was in a sense the foundation already in place, and we didn’t have to relearn how to parent Mikey. We, I think for what the missing element, was the understanding of his disability and the fact that he had this lifelong disability. So prior to that diagnosis and knowing about that diagnosis, we kind of knew Mikey and were working with Mikey and knew that there was a lot of complexity to Mikey. But I think once we had the information that you had the FASD diagnosis, that was the missing element, wasn’t it? And it just so many things began to make sense.
Neal Goodwin: It did. So it was.
Nicki Goodwin: I think we were already equipped in many ways to deal with it, but it was more to actually understand it. I think, um, that was the bit that was missing misunderstanding the disability.
Chloe Tyas: So finally, before we welcome Mikey into conversation, I just want to know what you want people to understand about FASD.
Nicki Goodwin: Well, there’s many things that we kind of mentioned during the conversation we’ve already had on the podcast. Um, but I think there’s a couple more, um, and I particularly wanted to highlight really, um, how important it is to support those caring for somebody with FASD.
The person themselves that have the FASD, and we’ve talked about the lack of understanding around FASD so get yourself educated. There’s lots of stuff out there on the internet about FASD. So we’d encourage people, that are hearing this podcast that don’t know anything about FASD to, to go away and, and research and, and get educated.
Neal Goodwin: Yeah and like to see, particularly birth mums, not demonized in, some way because their child has FASD you know, some women don’t really understand the effects of alcohols during pregnancy. Some could be pregnant, not even realize they’re pregnant and then be drinking alcohol. Um, but the trouble is if they think that actually that, they’re gonna be victimized in some way by the health profession, then they’re not gonna, come forward and it’s gonna delay the diagnosis for their child. I think actually we need to just accept that sometimes we need to educate, particularly the dangers of drinking during pregnancy. Any amount of alcohol during pregnancy is just not a good idea at all. Um, there is no safe limit. Um, depending on when, during the pregnancy you drink depends on what symptoms that the child may or may not end up with. There’s still a lot of research going on.
But equally, I just think that we shouldn’t, like I said, we shouldn’t victimize people, because of what’s happened when they might not have even known about it. And people need help and support, to not feel guilty as they may already feel guilty. You’ve had a child that’s got a disability, then you think you might be the cause. So that’s enough live with see it?
Chloe Tyas: Yeah, I think that’s a really important message Neal Thank you.
Hello Mikey. So Mikey’s just walked in the room to join me with Neal and Nicki. Hello.
Mikey Goodwin: Hello.
Chloe Tyas: Nice to see you today. So today we’re talking about FASD and we want speak to you directly. So what is it like to be you?
Mikey Goodwin: Um, I dunno. I guess your just yourself at the end of the day, you have your struggles, you have you’re up and down each day, but you get through it with the support of loved ones and the network.
Chloe Tyas: That’s a lovely answer, so we wanted to talk more about challenges and successes. So what challenges do you face in your life Mikey?
Mikey Goodwin: Uh, it’s like forgetting things like if I like, for example, that if I get asked to do like five things at once, I can like do two of. I’ve got no concept of time. Like 10 minutes is like an hour for me. I’m like, it’s plenty of time. Um, but yeah, there’s so many different struggles and so many to highlight it’s difficult.
Chloe Tyas: That’s lovely. Thank you for sharing that with us. So in terms of successes, so obviously you have a part-time job at McDonald’s. Congratulations. Can you tell us a bit more about your job at McDonald’s?
Mikey Goodwin: Well, it just depends each day to day, sometimes you are serving customers and sometimes behind in the kitchen making a Big Mac. It just depends each day. So for many people around the same places.
Chloe Tyas: And what’s part of your job that you like the most?
Mikey Goodwin: No offense McDonalds, but I don’t really like any of it. I just care about the money guys.
Chloe Tyas: What’s your favourite meal at McDonald’s?
Mikey Goodwin: I just have the same thing, hamburger only ketchup that’s it or a quarter pounder only ketchup recently.
Chloe Tyas: Very nice. So also one of your passions, your main passion is musical theatre. Can you tell us a little bit more about.
Mikey Goodwin: Hopefully it will be my career at some point and yeah, I’ve done multiple shows in several places. So lucky enough to experience that.
Chloe Tyas: Lovely. Can you tell us about your most recent show? What that was?
Mikey Goodwin: My recent show was my last show with Triple Threat Theatre Academy ‘Shout out to Triple Threat’, we did home which was a mixture of loads of different things from so many talented people.
Chloe Tyas: What was one of your songs? What was your favourite song?
Mikey Goodwin: We did, we did hand jive from Grease.
Chloe Tyas: Oh, amazing. Wonderful.
So I want just pass over to Neal and Nicki for a moment and I want to hear from them. So I want hear what the best thing about Mikey is.
Neal Goodwin: The best thing about Mikey, oh he will be getting embarrassed now. He’s very loving and, incredibly generous, took us out for a meal for father’s day with his own money to celebrate. We could have whatever we liked on the menu he said.
We’ve talked about a lot of challenges and struggles, but actually, uh, we wouldn’t not have him in our lives. Despite everything he’s part of our family, he’s our boy.
Chloe Tyas: And the big question is, does he ever make burgers at home?
Mikey Goodwin: was that seriously a question?
Chloe Tyas: No, no, I’m just kidding. I’m just kidding.
Neal Goodwin: Does he make burgers at home? No.
Nicki Goodwin: But sometimes, he does finish his shift and surprise us and bring us something home from McDonald’s.
Mikey Goodwin: I don’t make anything at home. That’s one of the things of FASD, and I quite like it.
Chloe Tyas: So just a little bit more about your diagnosis. What does FASD mean to you?
Mikey Goodwin: Erm I don’t know really, I’m unique, different from what other people see. So like for example, um, you might meet me like maybe a couple hours and you think I’m really normal. The more you get to know me, I’m a whole lot more.
Chloe Tyas: That’s lovely. Thank you for sharing that. So obviously FASD is an invisible disability that no one can see. Do you find that challenging?
Mikey Goodwin: Um, it just depends if I spend a lot time with people then yes, if not for example if I meet someone like a celebrity they would think I was quite normal. So any celebrities like listening…
Chloe Tyas: Which celebrities would you like to be listening?
Mikey Goodwin: Uh, Layton Williams, uh, from everyone’s talking about Jamie. Fingers crossed I’ll send this I’ll tweet you.
Chloe Tyas: What do you want people to understand about FASD that they might not already?
Mikey Goodwin: Um, it’s very hard for me, to make friendships if you can just gimme a chance and really like try I know some people try but others give up easily. Cause it’s not, it’s not that bad. So yeah.
Chloe Tyas: Oh, thank you for sharing that. That’s wonderful.
You have been listening to fostering with Chrysalis, with me, your host, Chloe and the Goodwin family. If you enjoyed this episode and you would like to help support the podcast, please share it with others. Post about us on social media or leave a rating and a review.
You can find us on Instagram, Facebook, and Twitter by searching Chrysalis Consortium. And if you’re interested in finding out more about fostering with Chrysalis, head to the website or contact and the team.
For more information about FASD:
https://fasd.me/me-and-my-fasd/
https://nationalfasd.org.uk/get-involved/international-fasd-day/
https://www.nhs.uk/conditions/foetal-alcohol-spectrum-disorder/
Foetal Alcohol Spectrum disorders: Parenting a child with an invisible disability
By Julia Brown and Dr Mary Mather
