Kurt continues his quest to find out more about the people who live with FASD. In the second part of this multi-part special, Kurt is joined by Jessica; an advocate, writer, speaker and person with FASD, who was previously interviewed in Series 2.
They chat about her life, her FASD symptoms as well as the tips and advice she has for other people with FASD who are living with this invisible disability.
Please check out Jessica’s twitter page through this link:
For more information about FASD, please go to:
Producers: Kurt Lewis, Louise Gray and Julie Flanagan
Interviewer: Kurt Lewis
This project is funded by the National Disability Insurance Scheme (NDIS) in collaboration with NOFASD Australia.
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.
Beginning her FASD journey after being diagnosed with FASD at the age of 32, Jessica has become a tireless advocate, writer and speaker on the topic of FASD. Recently Jessica was interviewed for a news story titled “Hidden Epidemic of Fetal Alcohol Syndrome”, which aired on The Project TV show and was subsequently shared around the world on social media.
Kurt Lewis (00:03):
How much do you know about pregnancy and alcohol? The reality may surprise you. Alcohol exposure while in the womb may cause Fetal Alcohol Spectrum Disorder in unborn children. 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. This podcast will take you behind the scenes to chat with the people who understand FASD. This is Pregnancy and Alcohol: The Surprising Reality.
Kurt Lewis (00:42):
Welcome, welcome ladies and gentlemen. Welcome to this episode of Pregnancy and Alcohol: The Surprising Reality. This is your friendly neighborhood podcaster, Kurt Lewis, speaking. Today I’m going to be doing the second interview for our FASD “First Voices special. I’m sitting down with another amazing guest – someone who’s been on the podcast before. You may recognise her voice – the FASD advocate from episode eight, series two – Jessica, how’s it doing Jessica?
Hi Kurt. Nice to see you. Nice to hear from you. I’m well, thank you. How’re you going?
Kurt Lewis (01:17):
How have you been, Jessica, what’s been happening since the release of your podcast episode last year?
Yes, maybe I would say that maybe it’s not all exciting for some, but I would’ve never thought in a million years that someone would want to interview me for a podcast. So, I never really thought I’d be one of those people that can say, “Oh, you know, just like tune into my podcast” or you know, “here’s my podcast for your easy listening”. So, I really love it. I’m really proud of it. I’m proud that I can be a person that has something to share, that people value. And I, you know, I spent a lot of my life not feeling that I had anything to offer, not feeling that valuable or worthwhile. So, you know, I really feel like I’m contributing to community, and this is, it’s really had a big impact on my sense of achievement and worth. And I’m really, really pleased, Kurt. And I guess it really solidified for me that I’d like to be able to continue to advocate and educate in this way. You know, through open conversation and sharing the information and you know, sharing the facts, squashing the stigma. I hope it continues to be helpful.
Kurt Lewis (02:24):
Honestly, I’m sort of jealous because I wish someone would interview me for a podcast. No one’s invited me yet. <laugh>.
<laugh>. It’s cool. I like it. <laugh>.
Kurt Lewis (02:36):
So, has anything new been happening since our last interview? Anything interesting been going on in your life?
Well, I’m a lot busier, that’s for sure. And that has definitely been challenging, but it’s – it’s really exciting for me. I, you know, I feel so much more in the world, you know, and that I’m actually living a life and I didn’t feel like that again. I didn’t feel like that for a – a really long time. Fatigue is still a major issue for me. And you know, just last week, the other week I was preparing a presentation and I was pushing it. I really wanted to do well. I wanted to finish in time, but I struggled a lot with just organising the information and structuring it and it just blew out. And after all was said and done, I completely crashed. I spent most of the last week in bed, to be honest, except for the days that I actually had to be up. Really just kind of exhausted from the cognitive and physical effort of it all.
But yeah, I got through it, but there’s always a trade-off, you know, And oh, for all your listeners, if you haven’t heard of – and Kurt as well, of course – if you haven’t heard of ‘Spoon Theory’, that’s kind of my life. I run out of spoons a lot and it does make fulfilling goals and projects and things more slow and more difficult. I’m really grateful that I’m having the opportunities and that I am doing stuff. And so, at the moment I participate in a number of advisory groups and I’m really chuffed. They cover a range of projects in education, diagnosis, awareness-building, campaigning. I do get a little bit intimidated with all these professionals and experts and highly qualified people, but I’m just really happy to be able to contribute in this way. And I have been really warmly brought into the fold and encouraged and I learn a lot and I just want to be as helpful as I most possibly can be.
And I’m definitely a bit of a perfectionist. So, I want everything that I say to be good and to be helpful and to fight for the cause, I guess. One of my next big things is that I have been invited to speak at this year’s Brain Injury Conference at Sydney University in July and it’s going to be my first time speaking to a live audience. And I was told that it would be likely that I’m introducing the subject of FASD to a lot of people that have never heard about it before. So, I think there’s going to be a really good opportunity to raise awareness and I’m totally terrified, but I’m super excited as well, because I think everyone needs to know and understand FASD, especially brain doctors. So, this is exciting thing that’s coming up for me and yeah, really pleased.
Kurt Lewis (05:19):
What is Spoon Theory?
So, spoon theory is just a really simple way to explain chronic illness, particularly around things like fatigue. So, there’s some really great YouTube videos that explain spoon theory, but basically, it’s this idea that every day you wake up with a certain amount of spoons and every task that you do throughout that day takes any number of spoons from you. Basically, I go through my days and my weeks and when I plan, I basically decide whether or not that I will have enough spoons to get me through all the tasks. And if I don’t have enough spoons, then I have to drop tasks. Like I might have 12 spoons in a day and just getting up showering and having my breakfast might take up two spoons and then it’s like, what else can I do with the spoons that I have? So, it’s just a way to manage your energy and to pace and it helps people who may not have issues with fatigue or chronic illness, and it just helps them to understand how you manage your time. I definitely resonate with that.
Kurt Lewis (06:26):
That’s an interesting way of visualising it. Like you can visualise it in your head that spoons, you’ve got a supply of spoons. I mean we all have a supply of spoons and some more spoons I guess than others.
Absolutely. And so, it’s just about kind of managing, like knowing, well if I need three spoons to go to the pool then I probably can’t do this other task that needs the three spoons cause otherwise I won’t have anything left to cook my dinner and things like that. So, it just, just kind of keeps you in check and it helps you. Yeah, again, manage tasks and know what sort of energy you’ll be expending and it’s just helpful. Like you kind of know that on the personal level, like going through your days, but it’s, it’s helpful when explaining to other people that might not have those same issues and just to make them aware of it.
Kurt Lewis (07:10):
Well, I guess that kind of leads into my next question. During your kind of like last interview you did give us like a list of your FASD symptoms. I was wondering if you could give it like a summary of your, the symptoms for the listeners at home who didn’t listen to your previous episode. Amazing episode by the way guys, if you haven’t listened to it, go back and listen to it. Definitely, a must listen to – but sorry to interrupt -Jessica, please continue. <laugh>.
All good. Go listen to my podcast. In a nutshell, I struggle with my executive and adaptive function, emotional regulation, memory, attention, sensory processing and I have some common co-morbidities also. So, I will explain that a little bit for anyone that might be a little bit confused by that. So, my understanding is executive function is a blanket term for all those higher order functions that allow you to basically manage and organise your life in an efficient and productive way. It really controls your ability to do. And so, because my executive function is poor, I really struggle to prioritise and organise my tasks and responsibilities and create and keep routine. I get very easily overwhelmed if there’s too much on my plate. And generally my stress threshold and what I can juggle is much lower than a typical person. I don’t multi-task well at all. And that’s also because my working memory isn’t very good at organising and manipulating information.
So, it takes me a lot of cognitive effort to do quite basic things and I get very tired, and it makes all the other things more challenging. I struggle to make decisions and my thinking can be quite rigid sometimes, which means when you know, problems arise, I can’t always see a solution, or I can only see some like one way of doing something and if that way doesn’t work, I’m like, I’m completely halted in my tracks. I don’t know how to move forward, and I have to stress that these don’t have to be complex problems. It can be as simple as finding alternate transport when you miss the bus, you just don’t necessarily know what to do cause you just can’t work out the answer to the problem. So, another thing is I find resource finding quite difficult, but I think, I think the biggest thing for me in regards to my executive function and I think something that’s caused the most sadness for me is the difficulty in initiating tasks or initiating the things that I want to do.
I struggle with this a lot. I, I might know what I want to do, I’ll even know how to do it, but the thing in your brain that makes you actually take the action doesn’t work properly. And that is really, really hard. My adaptive function <laugh> is how well I’m able to care for myself and interact – interact and participate socially and appropriately and move into new and different environments and you know, basically develop alongside my peers. And I have really struggled throughout my life in, you know, social situations, particularly in groups. I’ve struggled to make and keep friends and that has definitely left me quite heartbroken. It is something that’s quite embarrassing for me to say, but I do say it because I feel like it’s important for awareness building that the social aspect and just being able to get along with the people in your age group can be quite difficult and that can be quite isolating.
It’s safe to say that I was really behind the eight ball throughout school. I, you know, when my peers went to music videos, I was still watching cartoons and when they were kissing boys I was still playing with dolls, you know, that, that kind of thing. I was – and it made me pretty lonely. Like I was a lonely kid and yeah, I was pretty a lonely adult too. But more slowly more people are coming into my life and that’s been really nice and that’s been changes and I’ve – yeah, I’ve enjoyed the change just from the understanding. Yeah, so it takes me a lot of time to adapt to new environments and tasks. I’m not very good at maintaining regular eating habits. In – in my family we actually, we always factor in transition times. I get reminded to drink water all the time cause otherwise I won’t drink for days and I tend to blow up and melt down, you know, not because I want to be difficult or because I’m mean, or you know, I want to get my way all the time, but often it’s because I’m emotionally unregulated if I’ve had to transition too quickly or there’s been a lot of cognitive effort or I’m sensory overloaded.
So, it gets a lot of demands placed on me. And that’s a lot, huh? I’ve been talking a lot <laugh>.
Kurt Lewis (12:06):
No, no, no…
Kurt Lewis (12:08):
It’s all good, it’s all, it’s all information. I’m sure our listeners would be very appreciative – know that you go through all this every day, you, you kind of, you’ve got a lot to deal with.
Well, I don’t think people realise how much a person with FASD is actually trying to navigate with everything that they do. I was just talking about executive function and adaptive function. Those are only – and I wasn’t even talking about it in full, I was just talking about what’s most relevant for me in those two brain domains. But there’s up to 10 brain domains that can be, you can be affected and it’s a lot of it’s, it’s a lot to deal with. Just for the sake of not talking the listeners to death, I’ll just say this. You know, the difficulties that I’ve just sort of mentioned, you know, they’re compounded I feel, when you have sensory issues, and you have – I have chronic fatigue and so I have a lot of fatigue issues. I’m really sensory sensitive, particularly with light and sound. My photosensitivity is hugely problematic.
I’m always dealing with headaches, migraines, visual aberrations. Some days just dropping a fork on my granite kitchen tabletop will shoot pain through my eardrum. It feels so loud. I, I’m not very good at blocking out competing sounds. So, that only adds the difficulty in like group socialising. Like if you wanted to go to the pub and hang out with your friends, you know, that actually becomes quite a huge amount of cognitive and sensory effort, you know, to do that successfully. And it’s quite hidden. People don’t really necessarily see that you’re struggling with those things. And then as far as co-morbid symptoms, I have tachycardia, orthostatic intolerance, I’ve got problems with interception, disordered sleep, chronic fatigue, chronic iron deficiency. But look, despite all this hurt, I really consider myself to be very lucky compared to what a lot of individuals with FASD go through every day. I do feel very lucky, but it’s a lot, it’s a lot to deal with and it’s hard.
Kurt Lewis (14:17):
Was it difficult going from – going into that area of being adult? Becoming an adult? Was it difficult with FASD in becoming…
Oh – oh yeah, for sure. And you know, that was sort of probably my darkest times, you know, my late teenage years into and throughout my twenties were exceptionally difficult. And, of course, we didn’t have the knowledge at that time. I wasn’t diagnosed until I was 32 years old, and we knew that there were some quirks, but we would’ve never considered it to be brain-related to being neurologically related. And I had a lot of trouble. So, uh, for, okay, so here’s an example. I moved to Melbourne in 2008 just before I started on my sort of medical journey. And I was living in a house, and I had a blow-up camping mattress, and I was supposed to, and wanted to, buy a bed within the first couple weeks of moving into that house. I didn’t know many people. I only knew one person in Melbourne.
And, anyway, so I was sleeping on this blow-up bed knowing full well that I had to organise to buy a bed and have it delivered. But a year later I was still sleeping on that blow-up mattress, which was deeply uncomfortable and um, destroyed my back. But the problem was – is that I couldn’t figure out the steps to, and or initiate the steps, to go and buy myself a bed and order and organise the delivery of that. So, I stayed on a blow-up mattress and ruined my back and slept terribly because I just actually couldn’t do the steps, at 22 years of age, to buy myself a bed. And what happened is my Mum actually flew to Melbourne and helped me buy a bed and had the bed delivered – and she did that, something that I couldn’t do in a year, she did within about four hours and sorted it out for me. And I just cried and cried and cried because I was just so, I, I don’t know, I was just so, it seemed so hard to me, and it was so, kind of felt so insurmountable and then she came, and she sorted it out just like that. And yeah, I think that was a bit of a – a catalyst actually for a mum also recognising that there were some peculiarities there, cause I couldn’t do it. I couldn’t do that task. Adulting was very difficult, but I’m much better at it now. <laugh>,
Kurt Lewis (16:57):
I imagine you’ve got a lot more supports now that you’ve been diagnosed – you’ve got supports and strategies that kind of help you with the day-to-day stuff.
Kurt Lewis (17:08):
What kind of supports and strategies do you have in place at the moment?
Ooh, okay. So, I think, I think ultimately planning and pacing some of the most important things for me and counting my spoons, of course, always count my spoons. If I overexert it can definitely take me longer than a typical person to recover. But yeah, accessing supports through the NDIS has been absolutely life changing and I hope it continues because I don’t know where I would be if I didn’t have them. It’s really created a lot of scaffolding in structure. Like I love my support workers so much, I love them. And along with my mama bear of course who’s um, number one second brain. But they have really been fundamental in making it possible for me to even speak with you today. I had my support worker, you know, help me talk to me about how I wanted to answer these questions with you today.
We, you know, worked through the timeline. You know, it was, I don’t do those things well on my own. I do think in certain ways, like I would benefit from more structure. There are some gaps in my supports, you know, like I need a bit more help getting my eating habits on track. I’m trying to establish better morning and night routines. And that has been quite difficult – and it’s really hard to find support services for adults that are FASD-informed. That’s – it’s very, very tricky. And so, they’re kind of teaching as well. I, I’m not depressed. I feel hopeful for life. Um, my anxiety is much more manageable. So, I think really my support worker does a lot. She does so much to keep me organised and on track to facilitate and initiate the things that I want to do to keep me healthy relatively, to support me emotionally.
And you know, this sense of forward momentum was really lacking in my life. So, I’m really, really, really grateful for that. So, some of the things I have in place is like, I leave Wednesdays as a midweek rest day. I really try to avoid filling that day with tasks or having to leave the house. I just need a wind down to be able to get through the start of my week and get through the end of my week. I do regular physio. I have other therapies and all those sessions are pre-booked and they’re paid for in advance. So, it minimises the issues with executive function. I just know that I have to be there at a certain day, at a certain time or they come to my house and that offers me structure and routine, cause it’s the same every week. And that’s the same with my support worker also.
She’s booked in at the same time, same, same day every week. And that just provides a lot of structure that I didn’t have and couldn’t maintain by myself. And so, generally what we do when I’m with my support worker is on the days she’s with me, we just decide on the tasks that need to be done in the following session. So that means like we’ve always got a plan. Like I’ve always got an idea of what we’re going to do and what’s happening and it’s sort of in alignment with what I want to get done and what my goals are. And oh, so the best thing ever happened a few weeks ago, Kurt. So, I was finally able to get my hands on these special pink lens glasses. They’re called FL 41 lenses and they block out blue light rays. Oh um, much better than just regular blue light glasses.
They’re quite strong – and that’s to help people who are highly photosensitive and struggle with migraines and headaches. And, it has been such a game changer. Oh my god, I’m so happy. Like the difference has been so significant. It’s, it’s like the best piece of equipment that I’ve had in years. I usually get daily headaches. I have, I have vision like temporary vision loss, I have aberrations, I get migraines and um, I can’t be in bright lights at all. I can’t stay on the computer for any extended period of time. But I’ve been wearing these for three weeks now and I’ve had like, I can, I’ve had like two headaches where normally I would have headaches every day. Like it’s just been amazing. I can’t believe what a huge difference it’s, it’s made. So that is an accommodation that I’m just so happy to have and I think it’s, yeah, definitely a game changer.
And what else do I do? I use a lot of aromatherapy. I’m a huge fan of aromatherapy. I was really skeptical at first, but it is an emotional lifesaver. It puts me to sleep. It alters my mood, it wakes me up, it helps me focus. I use it topically. I ingest them. I use a diffuser to put the smell throughout my house and um, yeah, pure essential oils. I hands-down recommend anyone try, they’re known to help neuro diverse people. I’m all about it. And if all that fails <laugh>, I have my Mum. And my Mum is absolutely my 24/7 second brain and she’s actually the one that is responsible for finding all these aids and supports and indicating to the NDIS what I would need. I couldn’t have done that without her. So yeah, lots of great new things in place. I still have my ups and downs, but overall, I’m just so grateful and so happy for the improvements. It’s been wonderful.
Kurt Lewis (22:52):
I, I do love the glasses by the way. I was going to make some rather lovely – for all you listeners at home – she’s wearing this very lovely pair of glasses. You just, I wish I was, I I have not same, but I have, I’ve glasses that get rid of the blue light as well. I wear ’em at work cause I’m staring at the screen all day and it gets a bit, you know, headachey. But I’m glad you’ve got some good glasses that helps you with the, with the headache.
Oh, they’re just next level and if you struggle with headaches or anything, I would and, uh, the light sensitivity, I would recommend them. They’re not the cheapest, but I had to get it sent from the States, but, ah, amazing. I love it.
Kurt Lewis (23:30):
So that, that leads to kind of like, to the final question, uh, the final round if you per se, Uh, do you have any advice or tips for people with FASD or caregivers who are helping a person with FASD, who might be listening? Any strategies that you would recommend to people with FASD?
My biggest thing, and I always say this and um, I will say it again, know your neuro-behavioral symptoms. Know them inside and out and how they manifest in behavior in the real world. I think understanding the triggers and the tells is – and understanding your person and how their brain works – is the biggest aid and benefit you can give to them is that understanding and, and you will be able to accommodate them properly if you understand what it is, that it makes them tick – and not knowing, I think makes life really tricky. It makes it tricky for you and it makes it tricky for the individual. And I do get asked this comment a lot and what I guess I’ve learned and how I feel about it is I don’t see a benefit in keeping a FASD diagnosis from the individual or the people they interact with.
I think carers need to be consistently teaching the individual how their brain works, explain to them the mechanisms – in like, in an age appropriate way of course, but give them the language, give them the language to explain and advocate for themselves. Because as they develop, I think this is what will really encourage confidence and encourage independence. It’s not about outing someone, it’s just about sharing the information with the right people to help them thrive, so they can get the best out of their days. And they just can’t do that if they’re living in the dark. And I think, I really think that’s sort of the biggest gift that you can give them is teach them about themselves. Allow them to know and understand themselves. I wasn’t diagnosed as a child. I – we didn’t know – and I didn’t have the understanding and I suffered – all my mental health issues I feel can come back to this lack of understanding and lack of knowing of myself.
And so, I think I would’ve had very different outcomes had I had the language around why my behaviour was the way it was, and why things were happening the way that they, they were. So, I would also probably argue that I think keeping it in the dark under this sort of guise of ‘protection’ can be quite damaging. I think. I think it kind of perpetuates shame. It kind of perpetuates that what you, you are living with should be hidden. And, and I think it keeps the stigma firmly in place and you know, FASD is so common we need to be talking about it openly without the shame or the blame and embracing the conversation and dispelling the myths. And I think we can be teaching and empowering, um, with those conversations. So yeah, know, know neuro behavioral symptoms, they’re really important to understand in order to effectively accommodate.
Kurt Lewis (26:38):
Thanks. Thanks a lot Jessica. You’ve honestly – great advice. Great. I’m glad – I thank you for sitting down and sharing your experiences with us. They’re very invaluable. I’m sure the people listening are very grateful. to be hearing someone like you talking, talking to them and yeah, I’m- I know that. I’m very grateful.
Ah, thank you so much. And just thank you for having, having me and I, and I hope, you know, I hope that was helpful and yeah, thanks a lot Kurt. Thanks for letting me share.
Kurt Lewis (27:10):
Thank you for listening to this episode of Pregnancy and Alcohol: The Surprising Reality. Please tune in next week for another episode of our little podcast. If you like this podcast episode, then please show your support by leaving a rating and review on iTunes. Every little bit helps. This project is funded by the National Disability Insurance Scheme, NDIS, in collaboration with NOFASD Australia, all rights reserved. For more information about FASD then please go to www.nofasd.org.au