Kurt is on a quest to discover more about people who live with FASD. In each week of this multi-part special, Kurt will talk with an adult who lives with this invisible disability to learn more about how they live with FASD. In Part One, Kurt is joined by RJ Formanek, founder of the Red Shoes Rock movement and a very successful Facebook support group for adults with FASD called “Flying with Broken Wings”.
They chat about Red Shoes Rock, how FASD impacted his life and the strategies he uses that help him manage this disorder.
To check out RJ Formanek’s Facebook support group for adults with FASD, please use this link: https://www.facebook.com/groups/FASDaFlyingwithbrokenWings/
For more information about FASD, please go to:
Producers: Kurt Lewis, Louise Gray and Julie Flanagan
Interviewer: Kurt Lewis
Interviewee: RJ Formanek
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.
RJ Formanek Biography
RJ is a person who is living with FASD, but who was diagnosed with FASD much later in life. RJ is a founder and leader of a Facebook support group for adults with FASD which is called “Flying with Broken Wings”. He is also the co-founder of the internationally known movement called Red Shoes Rock. RJ also speaks widely, advocating for people living on the spectrum.
Episode Transcript
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.
Welcome, welcome, Ladies and Gentlemen. Welcome to Pregnancy and Alcohol: The Surprising Reality. This is your friendly neighborhood, podcaster, Kurt Lewis. Today is the first interview for the “FASD First Voices” special. I’m sitting down today with an amazing interview guest, an individual who is very well known in the world of FASD the founder of the successful Facebook support group for adults with FASD called “Flying with Broken Wings”, creator of Red Shoes Rock – RJ Formanek. How are you doing, RJ?
RJ Formanek (01:16):
I’m doing well, Kurt. How are things with you today?
Kurt Lewis (01:19):
Oh, it’s, it’s a bit hot down this end. How about you?
RJ Formanek (01:23):
Uh, kind of the exact opposite on the other side of the world. Uh, it’s minus 25 right now, I think.
Kurt Lewis (01:28):
Oh – blimey – I don’t know how you cope – honestly, with all that,
RJ Formanek (01:33):
Layers- I dress in layers.
Kurt Lewis (01:36):
The opposite for Australia. Before we begin, I, there’s this question that’s honestly been bugging me ever since I saw Red Shoes Rock, and there’s been hints there again, but I just, I have to ask while I’ve got you here, are you a fan of the BBC TV series, “Dr. Who” by any chance?
RJ Formanek (01:53):
I have heard of it. Yeah. Um, once or twice, No, actually when I was quite young, I started watching it, the, the original series and when it rebooted in, uh, 2005, I just became a fan again. It also worked in really good with my red shoes because there was a Doctor, the Tenth Doctor played by David Tennant who were a pair of red trainers, which I did anyways. That, um, has become my symbol – so I was able to work that sort of appeal of that character into how I dressed and, and how it’s not cosplay, but it, it’s, it’s definitely derived from “Dr Who”.
Kurt Lewis (02:34):
What’s that a great Doctor to choose from – the Tenth, so full of energy, so full of life. And he’s, yeah, he’s very – been very popular with the fans, the Tenth Doctor.
RJ Formanek (02:42):
And he also whined and mourned like, like so few other doctors did. Yeah, He could complain and whinge and he was, he had so many foibles. It – it was a character that I could use because it’s hopeful, but it’s realistic.
Kurt Lewis (02:53):
Yeah.
RJ Formanek (02:54):
So, it, it wasn’t too far out there and I, I was able to sort of meld that into the – the red shoes thing, which actually, you know, was just a personal statement of my own. I just wore them because when I was a kid, I always had the white ones with the black one, and when I saw the red ones, I always wanted them. So, when I was an adult and I found them, it’s like, “yes!” I finally got them. So, it was really just a personal fashion thing. But Jody Culp, who is an F. A. S. D. educator in the United States, was talking to me about it one day. She was asking me about why I wore them and what they meant, and together she was the one who actually came up with the idea of maybe we can use this as a symbol because it does denote movement and it’s vibrant and the colour is all about excitement. Which people with FASD, if you know any of us, we’re a very excitable lot <laugh>.
Kurt Lewis (03:51):
Definitely nothing says excitement like red shoes. Honestly, I love red shoes. I ended up buying a pair, but I wasn’t able to find one my size, so I ended up going a size down and kind of suffering a lot of blisters, but I just can’t bear to part with my red shoes.
RJ Formanek (04:07):
I’ve had a pair that were not quite the right size too, and they can be fun, but yeah, they do look sharp.
Kurt Lewis (04:14):
Oh, amazing. Go so well with suits as well.
RJ Formanek (04:17):
Exactly. <laugh>, I’ve actually shown up in court in my red shoes.
Kurt Lewis (04:23):
I went to my formal…
RJ Formanek (04:24):
My landlord had an Act 10 dispute and, and I had to testify. So, I showed up in my suit, in my red shoes, and they actually let me in and took me seriously.
Kurt Lewis (04:34):
That honestly would’ve looked amazing – getting down to the difficult questions, I guess. Uh, <laugh> the non Dr Who related – for those who are unfamiliar with you and the amazing work you’ve done, when were you first diagnosed with FASD?
RJ Formanek (04:47):
I wasn’t diagnosed until I was 47 years old. So, I’d essentially lived an entire life into my middle age not knowing what was going on and why life was the way it was for me. Throughout all of my adulthood and well through my teens and childhood too, there were a lot of mental health red flags, and I was constantly being assessed for this, or this, and I never quite fit. They assessed me for like schizophrenia and things like that, and I have some of the signs of it, but not all of them. So, they could never figure out what exactly my problem was. So, when I finally got the diagnosis of FASD, I was able to understand that my brain is actually different, and it does work differently. I’d always felt different. Again, part of the identification with Doctor Who – an alien living on earth.
RJ Formanek (05:38):
For years I told people I was raised by wolves because I didn’t feel a connection to the human beings around me, mainly because I didn’t understand them, the way their brains were, and I knew they didn’t understand me. So, I felt very alone. And after getting my diagnosis, one of the first things I did was read up on FASD and trust me, 12, 15 years ago, the information that was out there was garbage. It was negative, it was, uh, things like, you know, your kids are only going to reach a certain point and grow to a certain point, and then they’re gonna stop. There’s no hope for them, put them in institutions, etcetera, etcetera. And I knew that didn’t describe me, so I started reaching out and eventually, um, within a couple of years we started “Flying with Broken Wings”, which you had mentioned my, uh, Facebook group, which just on February 14th celebrated our 10th year.
Kurt Lewis (06:39):
Congratulations.
RJ Formanek (06:40):
Well, thank you very much. We have nearly 6,000 members and it is a very lively place, and through there I was able to meet other people like myself, and that sort of led to talking more about FASD. I, uh, was lucky enough to be sponsored to take the FASD training course, which is a two year, truncated into one year course. And I got my FASD certification through the people that I’ve met there. And since then, I have been, uh, just tearing it up with FASD all, all over the place. I, I try to get to as many meetings and, uh, things as I can because there’s a lot to talk about.
Kurt Lewis (07:19):
So – I, my next question was going to be how did the diagnosis affect your life? But by the sounds of it, it had a very positive effect on your life
RJ Formanek (07:28):
Long term it did. Short term… well, it took me about seven years to get the full diagnosis from when I started. Because I just kept putting it off because I didn’t believe in it – I didn’t believe it mattered. So, after I got it, I learned through time that it did matter and it – it made a huge difference in my life. Okay. I don’t want to put too fine a point on it, but I’ve done a lot of things in my life I’m not proud of, and I didn’t necessarily know why, but I owned up to those things. I took responsibility, even if I couldn’t say why I did this really erratic thing, Yes, I did it. Getting the diagnosis helped me forgive myself for being that person because I finally understood it was the way my brain worked. So I, I was able to forgive myself for a lot of things that I had carried around for years and years and understand that at times. I just didn’t know any better.
Kurt Lewis (08:27):
Wow. It must have been hard to come to that sort of, that place where you could kind of forgive yourself if you were kind of holding, holding that much guilt. If you don’t mind me saying,
RJ Formanek (08:37):
It took a long time and talking to a lot of people and eventually, um, letting go of other people’s resentments. Living with FASD when I was younger, I didn’t know who I was. I literally had no idea. I could not describe myself in any, I, even as an adult, I have a hard time picturing myself the way other people would see me. So, when people described me, they said I was bad. They said I was this, they said I was, you know – and I took on all those characteristics that I was described as. But through life, little things kept showing up that told me that that wasn’t the person that I really was. And I felt inside that wasn’t me. And eventually I just sloughed off, um, other people’s descriptions because now I know who I am. I’m not the person they described, that’s their version of me, but my version of me is the one that I have to work with. So that gave me the opportunity there to, uh, to see me, through my own eyes.
Kurt Lewis (09:43):
What is it like living with FASD? Can you give us some examples about how the symptoms impact your life?
RJ Formanek (09:51):
FASD, um, isn’t just about the brain. It, it’s also about 428 other physical comorbidities. So, I live every day, like with effects of the alcohol. I have dysmorphology in my body, which means that, uh, like one leg is slightly longer than the other. If you were to make me walk in what I thought was a straight line, I would eventually do a complete circle. But it’s painful because I have scoliosis. I was also born with a heart condition, which – it showed up a few times through my life, but finally really showed up about seven years ago when I had a heart attack. And they finally took it seriously. <laugh> up until that, that point, it was those panic attacks and things like that. The damage was there from when I was born, because our damage tends to radiate out from the central core.
(10:48):
And the way that the human embryo develops is it starts out flat. Say alcohol is introduced when it closes up, that alcohol is stuck in the center of mass, which is our central nervous system, our brain stem, internal organs. I have almost no feeling in my thorax and my abdomen. When I had my heart attack, it went on for four days cause I couldn’t tell what the pain was. I thought I had a sore shoulder. I can hear the electricity running in the walls. That’s a sensory thing. My hearing sometimes very, very high frequencies can almost make me cry because it’s so painful. Even car horns, some car horns, the, the really, really high-pitched horns, they’re really, really bothersome. Car alarms will freak me out. My brain just goes into a complete panic mode when those certain tones are hit. Light is a very big thing.
(11:46):
Mixing light sources really impact my eyes. Fluorescent lights are a big thing. When I walk into a room with fluorescent lights, I see a, a flicker and that’s constantly there and that gets really tiring. So, living with FASD is tiring. Among other things, aside from the trying to understand people around you, what they mean by what they say, what the intent of their words is – cause sometimes their words – people talk sometimes in circles and we tend to be very direct, very concrete people. And if people start describing things in flowery terms, we can very easily get lost, get confused. And that makes it really, again, tiring. FASD people are tired out most of the time. <laugh>, that’s what I found out.
Kurt Lewis (12:34):
Most people associate FASD with the, the sensory conditions, but not many people would think about your other stuff as well. Like you, it’s not feeling your thorax, the heart conditions, the thing with one leg being longer than the other, not many people would relate those kinds of conditions. It’s, I wouldn’t say unknown, but it’s very, not very well known. It probably should be well, more well known that there are other effects apart from…
RJ Formanek (12:59):
There is a lot about FASD and so it’s very complicated and to try keep up with everything that is being found out – like this um, 428 conditions – has just been found out in the last 10 years by University of British Columbia where they did a study. But we do need more research, definitely into this sort of thing.
Kurt Lewis (13:18):
A hundred percent. Are there any strategies that help you deal with the stuff like the sensory, your sensory conditions like the, the car horns and stuff like that? Is there stuff that helps you deal with those effects?
RJ Formanek (13:30):
Well, the first thing is being proactive and planning, knowing what you’re going to be having to deal with. I haven’t had to resort to earplugs or anything like that. I like to think I’m resilient, so I will try – and the only way I will try is if I know where the door is, because I’ve always been a runner. So, when the stress gets to be too high, I need to go outside. I need to go for a walk around the block or something like that. Give me that five minutes, I can go back and try again. So that’s the, the big thing for me is always knowing how to get out of where I am. I wasn’t really good with the police when they would put me in a little room kind of thing. I’m not good with small places. So having that ability to leave takes the pressure off and that helps me deal with most sensory things like that.
Kurt Lewis (14:23):
Do you have any advice or advice or tips for people with FASD or caregivers who are helping a person with FASD who may be listening at home?
RJ Formanek (14:33):
Oh, all kinds of tips, but the most important one, I think that, that we’re finding right now is the importance of connections in people’s lives, especially in the transition from teen to adult years. It’s a really big thing. And these are a lot of the people I work with. We used to always talk about what we referred to as the ‘external brain’ – that someone, that person with FASD can turn to, to, you know, just as a reality check the person that we can trust our touchstone. What we’re finding is that is way too much pressure on that one person. So, we are now advocating that everybody, caregivers, people on the spectrum, we all work to build a team around the person. So, if I have a medical question, my aunt is a nurse, I can go ask her. If I have a question about employment, my uncle does this, I can, I, I can go talk to him, or my friend does this.
(15:33):
It’s not all on one person because what happens is a lot of times caregivers are so worn down by the amount that they have to do alone that we need to spread that out into a team effort. So, it’s person-oriented team effort to keep that one person with FASD at their best and it works. So, these are the things that we’re really finding is connect with other people, other people can help – and let them. And pretty soon if we develop this team around this person that really improves their chances for success – immeasurably.
Kurt Lewis (16:15):
I can imagine having that support network. I mean, I have my own support network, but I imagine something for a person with FASD, that would be important. Trying to, trying to help, um, not help them, but trying to have that network there in case you have that medical questions in case you have this and that. It’s, it’s always good to have your team nearby supporting you.
RJ Formanek (16:36):
Exactly. And um, even if it’s someone you can just text with a simple question that – it’s great because that leaves the person not feeling alone in the moment. If you’re not feeling alone, then you don’t have the anxiety. If you don’t have the anxiety, then your stress level doesn’t build up and there’s less chance of a meltdown or some inappropriate thing happening – or just a negative outcome in general. Like leaving where you wanted to do something. Say I wanted to go shopping and there were a lot of people there and I was stressed out and I couldn’t get ahold of someone just to talk me through it for a few moments, just, yeah, hey, how, how you doing? How’s things? Yeah. You know, you can do this. Okay, good. We’ll talk to you later, just a little, just a little pat on the shoulder, just to let people know that the other person is still there in their corner and that can make a huge difference.
Kurt Lewis (17:25):
I’d like to thank you heaps, RJ, for sitting down with talking to me. You’re honestly, you’re amazing, the work you’ve done. I mean the work you’ll probably do in the future, mate. Yeah, it just, it, it honestly blows me away. I say, I know, I say I probably say this too much. Um, probably my listens are rolling their eyes right now. Kurt’s been blown away. But honestly, RJ is just, yeah, the, the stuff you’ve managed to do, it’s just, it, it blows my mind. You’ve, you’ve changed a lot of things and I’m sure you’ve changed a lot of things in the future too.
RJ Formanek (17:57):
Well, thank you so much. It’s just been a, an incredible trip. My life has changed completely, and I love what I’m doing now, so I’m having great fun with it.
Kurt Lewis (18:07):
It’s always good when you’re, when you’re doing what you love really and so much easier I think working – and working towards a purpose in, in essence,
RJ Formanek (18:17):
Oh, and I work for the best people. People with FASD are the most incredible thinkers. I love the – as we say, it’s not outside of the box thinking. We don’t even recognise that there is a box. It’s just free-range fox. Just crazy, I mean, in a good way.
Kurt Lewis (18:35):
Wow. There’s nothing wrong with that. And I think it’s always important to have that, that kind of stuff in mind. I think there’s too many people who think in the box or around the box or in the box. So, something, it’s always important to have a different perspective on everything we do.
RJ Formanek (18:49):
I find most, most people that I deal with on the spectrum like to have a laugh. Life is so serious. If, if, you know, we can just have a nice friendly conversation that can just make the whole difference in an entire day.
Kurt Lewis (18:58):
Exactly.
RJ Formanek (18:59):
Cause we’re just people too. FASD is about people, and we are people too.
Kurt Lewis (19:08):
And I think people forget that, and they just – they take things too seriously. I mean, seriously, it’s good, it’s always good to be serious now and again, but I think it really would really help. Humor would really help people relax in essence – and relaxed people is always easier people to talk to- and easier people to communicate with. It – humors a good way to allow this communication.
RJ Formanek (19:33):
People are so much more than their diagnosis. That is just one aspect of, of, of people.
Kurt Lewis (19:39):
Can I, do you mind if I put that on a T-shirt? Um, people are more than their diagnosis. I, I want to stick that on a T-shirt.
RJ Formanek (19:46):
Absolutely. Please feel free. <laugh>.
Kurt Lewis (19:49):
Well, thank you for sitting on a chat with me today.
RJ Formanek (19:51):
It’s been my pleasure.
Kurt Lewis (19:54):
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
