Embracing the Power of a Diagnosis: A Journey of Self-Acceptance, Advocacy, and Collective Action

Speaker 1: 0:09

This is part two of my conversation with RJ Formnak, from Flying with Broken Wings and Red Shoes Rock, and he's just a trailblazer with the FASD cause and we are so grateful to have him. Tina was not able to be in the last episode or this episode because she had some very sick kids, but we really appreciate you listening and being a part of this conversation. If you haven't listened to part one, please go back and do so, and in episode two you never know what we're going to say, so you have to stick with it, and we start with a really interesting comment, so you have to stay tuned to hear what we have to say. Here is part two. If somebody is just being diagnosed today with FASD, what would you tell them?

Speaker 2: 1:02

It's going to be okay, you're okay.

Speaker 1: 1:08

It doesn't make you any different than you were yesterday.

Speaker 2: 1:11

No, it doesn't make you into a different person, and it's sort of like shining a light down a hallway. It gives you extra information about yourself. A diagnosis is not a bad thing. A lot of people are afraid of getting one, but the way I look at it is when you're a kid and you know there's a monster under the bed. Every night when you go to bed, that monster is there. You haven't seen it, you don't know what it looks like, but you know it's there. And then mom or dad comes in, turns on the light and looks under the bed and there's no monster there. Or if there is something under there, you can name it. You know what it is. It takes away the power. When you can name the monster, it loses its power. So that's what I tell people. That's good. The diagnosis puts you back in control.

Speaker 1: 2:12

That is so good. I've never thought of it that way. I always say if somebody has cancer, you don't want to treat them with heart medicine, so you have to have the diagnosis to give them the right tools to be able to get better in whatever it is. I mean, that's just what you would do medically.

Speaker 2: 2:34

Exactly, I think with a lot of parents it might be embarrassment on their part Again. Stigma.

Speaker 1: 2:42

Yeah, In this day and age I mean maybe in the 70s, the 80s, you know but in this day and age everybody's got something, you know. I mean mental health is rampant. People are out there, Everybody's talking about all of this stuff and there's not being near as much of the stigma as there was way back in the day.

Speaker 2: 3:12

Exactly, and we have to strive to open it up more, dispel the darkness.

Speaker 1: 3:18

Turn the light on and look at the monster under the bed, see what it is and call it an act.

Speaker 2: 3:23

Very good you got it, you got it. Name that monster.

Speaker 1: 3:28

You know, rj, everything that you have done for this cause. You've brought FASD to the table. You should be in the conversation.

Speaker 2: 3:37

Oh, absolutely Nothing about us without us which was a project I took on for a few years was I went around talking about the need to involve us in our own world, in our own care, to have our say. Nothing about us without us. Don't talk about us. Talk with us. Don't talk to us, talk with us.

Speaker 1: 4:03

Yeah, you know, doctors try to make these kinds of diagnosis and they do that with other disabilities as well. But I mean they do it as if they're these intellectuals that are sitting around a table trying to discuss who we are and then they put it out on a piece of paper as if that's who we are and then they make decisions based on you know how we should be treated, and it's just really interesting and I like that. I already said this earlier, but I just love that the word spectrum has been changed for the word syndrome, because it just absolutely makes sense and it just broadens the definition of fetal alcohol so much.

Speaker 2: 4:44

Well, for example, the number of people who have walked up to me and said I can't even tell you have FSD after I've spoken. Yeah, that's the point, it's a spectrum.

Speaker 1: 4:55

Right, oh yeah.

Speaker 2: 4:56

Some people are more profoundly affected, some people appear less profoundly affected, but keeping in mind, what you see on the outside is not what's going on in the inside, and 28 co-morbidities can't be wrong.

Speaker 1: 5:11

Yeah, you know you also. You've got a movement going on surrounding you, kind of. I mean, you started Red Shoes Rock.

Speaker 2: 5:22

Oh, the angels want to wear my red shoes.

Speaker 1: 5:26

You know, I just absolutely do. You know how many people post that they've got the red shoes.

Speaker 2: 5:34

And you wouldn't believe the tears that I cry, tears of joy, of just like, wow, how one little statement. Now, I just wore red shoes for me. It was my little statement to myself because, like I said, people would make me feel shame for the way I am, and when you feel shame you automatically look down. But when I see those red shoes, my eyes shoot right back up and it's like no way this stops here and it's my statement to the world that I'm different. But you know what. You have to live with it. I accept it. Now it's up to you. Look at my red shoes and watch me fly. You know I'm not hiding, I'm not embarrassed it's. It's like I want to show the world that people with FASD are the color we are, the odd thought that just makes you stop for a moment and rethink things. So red shoes, to me, were very important. They they represented. I chose runners specifically because when I was a kid, runners were you know the way I got around. I always wore them, so that sort of transposed on into a look that I was wearing. And one day I was at a conference and there was no red shoes movement. Jody Kulp, who's an educator, and asked me what's with the red shoes? I mean, I'm wearing a suit and then I got these, these red running shoes on and I said it's just me, it's the way I am and I just want, you know, to have a symbol to show that. And she saw more in that than I did. Like I said, for me it was purely personal, I didn't tell other people to do it or anything like that, but she saw that and she saw the potential in it.

Speaker 1: 7:28

Right? Well, you're talking about converse shoes here in the US, right, Because they're converse.

Speaker 2: 7:34

The, the specific brand that I wear. Yeah, they are converse.

Speaker 1: 7:38

Yeah, because from the first picture I've ever seen of you with your red shoes, I mean, they're converse and that's what you know, people, I can't. When did this start? Do you remember when it started? It's been.

Speaker 2: 7:52

Uh yeah, that would have been 2010,. Maybe when Jody and I first first ran into each other, I'd have to look back. It was quite a while ago now.

Speaker 1: 8:05

Yeah, and then he started posting red shoes, and then other people started posting red shoes, and it just spread.

Speaker 2: 8:15

Well, if you go to redshoesrockcom, we have stuff for people to use being there, they can take, they can use it for themselves. We have logos, information, pictures, whole things that we've given out freely to anyone to use, and what's ended up happening is a true grassroots movement. People have taken it and it started doing their own red shoes things. Now, what's really incredible is monuments are being lit up all around the world. On September 9th at night, Um, cn Tower, niagara Falls, in in in North America, bridges are being lit up red and that, you know, that is just. It just blows me away when I when the pictures come rolling in of how all of these people have taken red shoes as their own and started doing these projects and it's all come together and it's just like wow, all from one fashion decision.

Speaker 1: 9:26

Yeah, I don't think most people realize where it started, but it started from you and I'll tell you what. My friend, my brother, you are an amazing individual. I don't know and I think I kind of touched on this, because you and I both have it, but we took something that affected our lives deeply and we could have went either way with it. We could have went down this path of oh, I feel awful about what I have and I can't make it in this world and allow it to overtake us. But you and I both have been determined to take this cause, or take our causes, to a completely different level and help others with it. What made you like that? Do you know?

Speaker 2: 10:16

I think I'm just ornery.

Speaker 1: 10:19

You wanted to beat the car. You wanted to just say oh you know, screw it, I'm going to take this and I'm going to just go against it.

Speaker 2: 10:28

Well, maybe it's the FASD or thing, or I'm not sure, but I don't want any kid to go through what I did, not knowing, not understanding, feeling less than so it. To me, it doesn't matter how uncomfortable I am, as long as the word gets out.

Speaker 1: 10:58

You know, that's what I always, that's what makes me cry is my kids, my three. What happened to me doesn't bother me. What happens to them, and watching them struggle and watching them realize, you know, that life can be cruel, is the hardest thing, and I don't want them to go through the things that I went through.

Speaker 2: 11:23

Exactly so you understand perfectly. My motivation is yeah, I may. Maybe it might be a bit of a struggle for me in the moment, but if I can reach people it's more than worth it.

Speaker 1: 11:39

You see, that's what makes you different, because and and me, I mean I'm going to just put that out there I mean that's what makes us different, in that we're worth, we. We are willing to go through the struggle to get it out there to help other people.

Speaker 2: 11:56

Yeah, sometimes when you're a trail breaker, you got to go into those dark places and you got to light the light.

Speaker 1: 12:02

So yeah, yeah, not everybody wants to be real.

Speaker 2: 12:09

No, no. And that's okay, because not everybody is necessarily ready for it, but the people who are, I think it's incumbent that we like the way for the other ones. As my grandmother used to say and these words ring in my ears every day watch out for the little ones. That's the whole thing. Always watch out for the little ones. And that's what I'm doing is I'm trying to watch out for the little ones so they don't have to do this, so they don't have to discover all of these things through a life of getting in trouble and failure and trying to do things that maybe don't fit you, but society wants you to do it, whereas what we're trying to say is you know, you are how you are, this is the way you were made, and if you accept it, the rest of the world has no choice but to accept it as well. If you don't accept it, that's when the anger starts and all of the hurt feelings. But if you accept it, if you can take it into you, you can take that, turn it around and it becomes real power.

Speaker 1: 13:26

Oh, that's good, and it doesn't have to become a negative, self-fulfilling prophecy Like, oh yeah, like I've got this and so therefore yeah, your book hasn't been written.

Speaker 2: 13:40

You write your book. I don't let other people write my book for me. I'm writing my own story and it's you know, it's the most free I have felt in my entire life. I spent almost 50 years trying to be who they wanted me to be, whoever they is. And once I, you know, fully accepted that, yeah, I'm never going to be that person. I'm going to be me.

Speaker 1: 14:05

Well, you're amazing because a lot of people don't feel that way. It's awesome that you can feel good about who you are.

Speaker 2: 14:15

Well, self-forgiveness is not easy because you can't fool it. As the poem says, in my case the man in the mirror. You can't fool that guy, the guy looking back at you or the woman looking back at you you cannot fool that person. So you have to work with that person and you know, if you believe in what you're doing, that can make all the difference in the world and I absolutely believe that. You know we didn't ask for this, but that automatically when you start talking about FASD, they think you're anti-alcohol, and this is why I try so hard to tell people no, we're not against alcohol, just responsible use.

Speaker 1: 15:01

Yeah, you know we don't see anything around in Ohio about FASD, but when we went to Tennessee it was really great to see signage. I mean there were like signs outside in establishments that would say, you know, don't drink while pregnant, pictures of a pregnant woman with like alcohol and a red line through it, and I was just that's amazing, because we don't see anything like that here.

Speaker 2: 15:34

We have. It's called Sandy's Law. There's a law in Ontario that any establishment, including grocery stores, that sell alcohol have got to have appropriate FASD signage that explains to people what alcohol can do.

Speaker 1: 15:52

When did that go into effect in Canada?

Speaker 2: 15:55

Oh, quite a few years ago now, at least Probably pretty close to 10 years. Now I'm thrilled, like, say, walmart in particular, where they could have one sign up, they have six.

Speaker 1: 16:13

Wow.

Speaker 2: 16:14

Their entire beer section is plastered with these Beware of FASD posters. It's like it's a great moment. I don't buy beer, but I walk down the aisle to see the sign all the time.

Speaker 1: 16:28

That is amazing. It's definitely not a law. I don't know if that's what. You would even say that well, yeah, a law that you would have to have signage like that.

Speaker 2: 16:40

Yeah, ours is a provincial statute.

Speaker 1: 16:44

Provincial statute. I can't believe that we're so far behind the times. The US does not compare to Canada in any way on prevention with that.

Speaker 2: 16:58

No, no, and I think part of the problem is the conversation has been largely about prevention, and what makes the stuff that I do so different is prevention is too late for us. Yeah, so we have to deal with the people who are here now.

Speaker 1: 17:19

Yes.

Speaker 2: 17:21

So I've moved it. I don't want to say I've done it myself, but we have moved the conversation from prevention to dealing with the fact that we're here. And once they accept the fact that we're here, they have no choice but to start figuring out ways to work with us. So public pressure can be a really, really big thing. This is what I'm always saying make a big noise. The more noise we make, the more they're going to notice us. But if we're quiet and subservient and shamed into not saying anything, they win.

Speaker 1: 17:59

I mean, I don't know what would benefit anybody to sweep this under the rug.

Speaker 2: 18:05

Embarrassment, automatic thing to people who aren't trained in any way, shape or form, is to go to blame and we need to move the conversation away from that, and this is where, again, I stay away from prevention for that reason. For me, the important thing is there are millions of us here right now. Hang on, I think I have a number. Okay, 15 per 10,000 people. Okay, where is it?

Speaker 1: 18:40

KABFASD.

Speaker 2: 18:42

That's the prevalence number Worldwide. It's estimated 120,000 children are born with FAS each year.

Speaker 1: 18:51

Wow, that's a lot of us.

Speaker 2: 18:55

Yeah, we're in the millions.

Speaker 1: 18:57

As soon as I put it in. It said 1 to 5% of US first grade children have FASD.

Speaker 2: 19:04

Yep, and in Canada we put it around 5%. So we start figuring out those numbers. We're talking millions of people.

Speaker 1: 19:11

What is the average range of an IQ for people with FASD is 45 to 120 and above. So I mean we can have a typical IQ.

Speaker 2: 19:22

Yeah, it's never about IQ, but a lot of times our learning styles are not recognized or not taught in a way that we can learn Because there are distinct learning styles and understanding that what works for one person doesn't work for another person.

Speaker 1: 19:45

Yeah, my issue was the IQ was there, but when you factor in my working memory and all that stuff, I mean it decreases by a lot. So my executive functioning and everything isn't there. So that's where the problems lie, and you do have to teach differently.

Speaker 2: 20:05

And a lot of people don't understand IQ. Intelligent quotient, quotient means that they take all these different things, add them together and end up with a mean average. At the end it's an average. It's a quotient of different brain activity. In my particular case, my IQ doesn't come out extremely high. It doesn't come out as an average, low average IQ because in their testing regimen I react too slowly. The information is there, it just takes me an extra couple of seconds to pull it up and on an IQ test that counts against you.

Speaker 1: 20:46

When I take those IQ tests, like, say, online or something like that, or when I took one even at a doctor when I was getting diagnosed with some of this stuff, when you take out executive functioning and processing and you take out, like you know, the what did I call it working memory, yeah. It was high. I mean it was like it was over 125 or I mean it was pretty average. But on the higher side with them, I'm not kidding when all that stuff was brought in it took me down to like in the six, like 60. I mean it was crazy yeah.

Speaker 2: 21:33

Yeah, that is why my official IQ comes in at, like I said, a low average, but it's not reflective of how my brain actually works. So IQ is always something that I'm kind of like don't put a lot of stock in that.

Speaker 1: 21:51

Yeah, my son's comes in really low, but you know there's also splinter skills with all of this and just because he's lower in one area like anybody could be he's higher in others, and that's where you have to hone in on the skills that he's really good at.

Speaker 2: 22:09

And brain development continues until we're in our 30s. Whereas a neurotypical brain development will often stop in their 20s, ours will actually carry on longer. I didn't know that, yes, yes, and we have a catch up period between usually roughly between 30 and 40, when it's a process called myelination. What happens in the brain is our synapses and our thought channels are basically like gravel roads right now, but they kind of bind together to form, if not super highways highways, which means our thinking becomes faster, quicker and we're better able. But this doesn't happen until, like I said, between 30 and 40. So up until that point our brains are still developing. So, yeah, he may not be doing extremely well now, but in 10 years or 15 years you don't know quite at this point how his brain will have developed.

Speaker 1: 23:10

Well, you know, I do. I'm a lot better at functioning in life in general and able to think and execute now than I was able to in my 20s. I mean I couldn't figure out what to do next. I mean it was just crazy how I lived or thought or felt. But now I mean, I don't know, I was just attributed to maturity. But it took me a long time to get caught up to my not necessarily my age, but to being able to be an adult. Let's put it that way.

Speaker 2: 23:50

Yes, yes, do at least fake it half decently.

Speaker 1: 23:53

I had to be years and years, but now I can actually be it. Yeah exactly.

Speaker 2: 23:59

It's a more comfortable role and a lot of times we're put into roles that we're not necessarily comfortable with and we grow into them, like being a mom In a lot of cases. In my case, being a dad was something that I hadn't expected and I hadn't planned for, but when it came along, you know, you just go with it.

Speaker 1: 24:17

Yeah, you know, disability or not, I am really proud of us, no matter how we see ourselves or how we measure ourselves against our peers. I mean, I think that we've done an amazing job. What does it?

Speaker 2: 24:31

feel like to be affected. What does it feel like to be disabled? I don't know, I don't feel disabled.

Speaker 1: 24:41

Right.

Speaker 2: 24:42

In fact, I feel enabled in a lot of ways that maybe my neurotypical peers aren't able to achieve. I can think in ways that they don't. So while when I was younger, trying to be the same was a painful experience, when I got older and realized I could be different, I can be different, it's okay. That freed me so much and helped me so much psychologically, because I wasn't dancing to somebody else's tune, I wasn't trying to sing a song I didn't know the lyrics to. Suddenly I was singing my own song and that made all the difference in the world.

Speaker 1: 25:30

And then people followed you. That's what happened.

Speaker 2: 25:33

Fortunately, yes, I think, because the message that I'm putting out is something that was different. What you would hear about FASD was a whole lot of negative stuff. Shame, blame. Let's not talk about it, you know, we'll just sort of ignore it, and I'm not. I'm standing up and I'm saying, hey, here we are.

Speaker 1: 25:54

Well, I am really proud of you. You don't need me to say that, but you and I used to follow each other's writings all the time and we would blog together. We had so many things that we would put out together, but one of the things that I don't know if you remember this, but I wrote this whole thing on how we saw things different. It was kind of like this Pull up a blade of grass and sit down next to me and get to know me. I feel, anyway, that it explained us a little bit better.

Speaker 2: 26:30

Absolutely, absolutely.

Speaker 1: 26:33

So that's what you've done and I think that you've explained FASD to people in a way where maybe took a little bit of the stigma away.

Speaker 2: 26:42

Well, a lot of the language around it is very clinical and very medical and you know, most people don't have time to figure it all out. So, having someone who's been to school, who's got like I have my postgraduate diploma in FASD, I can take those and break them down to where they're understandable for people like me on the spectrum. Getting the knowledge out to the people who are affected is one of my goals is I want the people with FASD to know that they're not wrong, that we can help make this world a better place and we are changing the world, each person doing their little bit. It's becoming more and more widely known, more and more accepted that it's there and now we can hopefully start to get the funding for better research. There are constantly more and more research projects happening which I think might not be happening if it wasn't for the big noise that we make every year. Rj, are you?

Speaker 1: 27:51

talking to some of these research companies. Are you you know? Do you know what they're doing? Because of some of the noise that you have made specifically.

Speaker 2: 28:00

Besides, just monies or I do talk to a fair number of FASD researchers. Yes, in fact, a number of them are actually in flying with broken wings.

Speaker 1: 28:17

That's amazing. Do you see what you? Oh, this is just amazing how you have elevated this cause and you know, one of the biggest things that you've done is that just you'd normalized it and you've allowed people that have it, like me, to have a place. Do you know what it's like to feel so different? But you have a place, you have like a home, and that's what flying with broken wings is. That's what Red Shoes Rocks does. I mean, you've created a home for people that didn't feel like they had a place.

Speaker 2: 28:51

I like that. I like that. I have been homeless. I've been without a tribe, if you want to call it that, and if I can do that for people, wow, that's mind blowing.

Speaker 1: 29:03

Well, whenever you and I talked and it's been forever since you know we've known each other, but I call you my brother because I didn't have a family that I really connected with, and you didn't either, and the two of us just connected and we were proof. You know that you don't have to be biologically related to feel like brother and sister, and that's how yeah, that's how you and I always felt with each other, and I forever will look to you like you're my brother and will love you that way, and I'm very grateful for you and everything that you've done for me and helped me find a home and a place.

Speaker 2: 29:49

I did. Oh, I love being your brother for my mother.

Speaker 1: 29:54

We help each other through a lot of tough times.

Speaker 2: 29:57

Oh, absolutely. It was through you that I finally learned that the way I write is okay. I was always so embarrassed about the way I write that I was trying to write like someone else, and it was through you that you taught me to just write like me, and that made a huge difference as far as reaching people, because I wasn't trying to be someone else anymore. So I mean, it's reciprocal. I may have helped you, but you helped me in incredible ways too.

Speaker 1: 30:30

Well, you know, when I was writing about FESD and some of the posts took off and I didn't really realize what was happening with the writing, I really appreciated how much you and I were loved in the beginning of this cause taking off. And I felt loved and you know, you and I, like I just said, you and I both had some rough beginnings in to feel loved, to have acceptance, to feel like people are listening to you and that what you're saying matters, is a big deal.

Speaker 2: 31:12

Yes, yes it is, and that's one of the things that you know. It throws me so much about all of the people with FESD who are speaking out and telling their stories Because it matters.

Speaker 1: 31:23

I just want to thank you. I want to. I can't believe that we're talking and you're here and I just my whole heart. As soon as I knew that we were going to do this, my heart was smiling, I was beaming. I knew that, you know, tina's kids are sick and I was like, well, you know, rj, and I just talked about doing a podcast with him about FESD, because this is September, and I was like, let's do this, let's just do this. And I've been beaming ever since. I'm so happy to look to you. I just love you so much. You're just the best.

Speaker 2: 32:03

Right back at you, mustang Annie.

Speaker 1: 32:05

You know what that is so funny? Because I was thinking about that Mustang Annie, that came from you.

Speaker 2: 32:15

Yep, you and your little red Mustang.

Speaker 1: 32:18

Yeah, I always had Mustangs. And can you believe that I drive a stinking soccer mom van? I can't believe that I drive soccer mom van. It's a seven seater van to get five of us in the van and then you know, the extras in there. I can't believe that I drive this thing, but in my heart I am still driving a Mustang.

Speaker 2: 32:42

Oh, I hear what you're saying. Life takes you to some pretty interesting places.

Speaker 1: 32:47

What's going on in your life, anything else. I mean you're going around speaking everywhere Um.

Speaker 2: 32:53

I had been extensively and then COVID hit and that totally changed things, because obviously you couldn't get out and do things, and so I started working more in flying with broken wings and we were able to support people through COVID, and that's what we ended up doing for like two years was was you know, trying to keep people involved, not slipping back, and everything, and I think we did a really good job, offshoot of which is I've had to take some time off because that was a whole lot of stress. It was a lot of work.

Speaker 1: 33:37

You know one of the things I know about myself having a FASD I am not the best caretaker for myself.

Speaker 2: 33:47

That that that can eventually get back to bite you Like I don't know. About seven years ago I ended up having a heart attack. Which part of um I was born with the birth defect. But one of the things they told me was vitally important for me was I had to learn to sleep more than four hours a night Because I could not sleep, and I have had to train myself to go back to bed and try to sleep, and you know, now I can sleep six hours, but it's taken me a while to learn to do that. Yeah, so yeah, learning to take care of yourself, because if we don't take care of ourselves, we're not going to be able to care for other people very long either, are we?

Speaker 1: 34:31

No, I mean, I'm always the last one to sleep in the first one awake, you know, and I also too have to turn my brain off, tell myself you need to go to sleep or you're not going to be any good for anybody tomorrow. So yeah, I'm with you there.

Speaker 2: 34:49

So, anyways, currently well, let's see Friday I am talking to Australia, then on 21st I'm talking to the United Kingdom, definitely getting back into it. Hopefully next year I'll be back on the road, because this year was still kind of a little iffy, so I've been mainly just manning the fort with flying with broken wings and doing that sort of thing and preparing for the next step, which hopefully will be Europe. I have a lot of really positive experiences when I'm meeting people face to face, when they can actually stop and talk to you and ask you questions and they can see that a person who has FASD can be seen as a person, not a diagnosis. One thing if I have a byline, it's FASD is about people. We're always concerned with the disability, with the diagnosis, but we forget about the people. Fasd is about people.

Speaker 1: 35:59

And I know how hard it is for you to get around and do these things. I mean you think, okay, I'll just get on a plane and I'll just go over here and speak. It's not that way when you have FASD, it's not that easy.

Speaker 2: 36:16

No, no, no. I'm lucky that I don't really suffer too much from anxiety, but yeah, from a sensory point of view, airports, airplanes, travel, it's extremely stressful and I tend to do it on my own. It's one thing if you have someone with you, but if you're on your own, that's daunting sometimes.

Speaker 1: 36:42

You know, I really give you a lot of credit for that. I don't know if I could do that by myself. I've done some speaking engagements but I always take an external brain as what I always call them with me because it just helps me navigate everything. But when I'm left on my own and I have all that on me to try to figure out within my brain, I can't say I can't. It's so anxiety-ridden within myself that I'm not sure if I can and if I can trust myself. I just had to drive to a place that was pretty far away from me by myself, well, with my kids, but I was the only adult in the car, and I turned around and I came home. I was like you know what? I know that this is going to put too much for me, so I'm not going to do that. But you know, when it comes to going to places, I want to be the first one there. I want to know what's going on, I want to know where I'm sitting, I want to know who's going to be there, I want to know what's expected of me. And when I know all of that, I do a lot better.

Speaker 2: 37:54

Yeah, living on the road and doing that sort of thing is not necessarily for everyone.

Speaker 1: 38:02

Hey RJ, could you talk a little bit more about how we are different, how our brains are wired, maybe a little differently, what makes us who we are?

Speaker 2: 38:11

Our brains are different and this is what we need people to understand. They are chemically different. Now, so a stimulant which would you know, keep someone else up all night calms us so we can sleep. I understand that my brain is different, that my body is different, because of what happened in my brain.

Speaker 1: 38:33

Right, yeah, there's nothing typical about us.

Speaker 2: 38:38

No way. Three days after my heart attack, I was back on my bikes and just riding around.

Speaker 1: 38:46

You know, I compare myself with my peers and even, you know, pretty close to my age, and I bounce back quicker than anybody. Oh yeah, and when I should be down in bed, I'm moving, I'm shaking, I'm doing life as if I'm not even sick and it just. People just are baffled by it.

Speaker 2: 39:14

I hear you, I take joy in the fact that we are different. And once you do that, once you open your mind up to that, it's incredible. When you can open yourself up to listen to people from where they are in life and validate that for them, they grow. They grow like crazy, like watch these young people with FASD who are out there now in their late teens, early 20s. In 20 years you know there's not going to be any room for a dinosaur like me because they're going to be monopolizing the conversation and taking us to heights that we can't even imagine.

Speaker 1: 39:59

Well, because you're showing how it can be done. I mean, you're trailblazing.

Speaker 2: 40:04

I hope so, because if there are too many people on the trail, I don't want to be there anymore, so I like talking by myself. That's awesome.

Speaker 1: 40:11

I totally am there with you, but you and me can be on the trail, that's fine.

Speaker 2: 40:18

Absolutely. For years and years, nobody really paid attention to how it got started. Now you know like I go everywhere and I'm seeing my name showing up in all different areas where people are, and I've seen people making speeches where they talk about me and it's like, wow, this is Whoa. Okay, the red shoes is one thing, because people were saying red shoes, red shoes, great, right shoes. Now they're saying RJ, and that's like whoa, I'm getting credit. Well, you deserve it. Yeah, I didn't do it for the credit, but yeah, it's a nice feeling it really is to have people say yeah yeah. Way to go.

Speaker 1: 41:00

Well, you got people paying attention, you got people knowing about what FASD is, and I think 10 years ago, 15 years ago even, you know, people just didn't know about it.

Speaker 2: 41:13

I think it's a long way. My first reaction was when I was told fetal alcohol spectrum disorder. But I'm not a baby. Yeah, I'm an adult. I don't have FASD. I'm not a baby.

Speaker 1: 41:30

Yeah, I mean, even with autism. People don't realize there's so many help, some resources, but by the time you hit an adult those resources drop off and it's like wait a second, we do become adults.

Speaker 2: 41:44

Oh yeah, Developmental is a key word. Developmental means through the lifespan, and we have to keep reminding people. This same thing happens with FASD a lot of supports for kids and then turn 18 and you lose everything. So you can now, for the last seven or eight years, maybe 10 years, get a disability for FASD, Whereas up until that point you couldn't.

Speaker 1: 42:15

Yeah.

Speaker 2: 42:16

You had to get it for something associated to the FASD kind of thing. So even that little change is just getting the government to accept it. I believe in us. I believe in people with FASD. I believe that we're not lesser. I believe that we are as equal as anybody else here on this planet. I was going to speak my truth and it's been accepted. That was a strange feeling.

Speaker 1: 42:49

When you live a life where you feel different and you're used to walking into the room and being different, it's nice to be accepted and you're the voice for a lot of people that don't for the voiceless, let's put it that way. So you do have the platform, but you've created it. You've created it.

Speaker 2: 43:12

Yeah, yeah, I guess you could say I sort of I self-funded my first show, like I didn't get paid for it. I paid for it and people came and we didn't charge and we did it in a church and that sort of thing, and it's just like I believe that much that I put my own money on the line to start this whole thing up. So, yeah, I'm in it to win it, just trying to change the world. I mean, not a big thing.

Speaker 1: 43:48

I really am very thankful that we had you today and you get to talk about what you love, you get to talk about your passion, and I'm so glad that you got to share this with us today.

Speaker 2: 44:02

And I'm more than happy to be helping you out with your project as well. I mean, if I can help out with that. Absolutely, I'm right here.

Speaker 1: 44:10

Yeah Well, you know this doesn't have to be the last time you're here and I would love to continue working with you again. Thank you so much, RJ, for being with us today, and we will see you next time on Real Talk.