Fetal Alcohol Syndrome and the Family with Stephanie Zhong

Blair Kaplan Venables: 00:00:00

trigger warning, the Resilience Project provides an open space for people to share their personal experiences. Some content in this podcast may include topics that you may find difficult, the listeners discretion is advised.

Blair Kaplan Venables: 00:00:12

Hello friends, welcome to radical resilience, a weekly show where I Blair Kaplan Venables have inspirational conversations with people who have survived life's most challenging times. We all have the ability to be resilient and bounce forward from a difficult experience. And these conversations prove just that, get ready to dive into these life changing moments while strengthening your resilience muscle and getting raw and real.

Blair Kaplan Venables: 00:00:49

Welcome back to another episode of radical resilience. It's me, Blair Kaplan Venables, and I am here today to share a phenomenal human with you and a phenomenal story. Stephanie has become, I think we met a couple years ago, she's become a friend, I'd say she was a colleague and became a friend. And I've loved watching her grow. But I knew her on a business level. I didn't know her on a personal level. So I'm honored that she's here. She is a brand storytelling coach and human design specialists who helps mission driven entrepreneurs and thought leaders make a bigger impact in business. And in life by Bailey by being unapologetically you and if you know me, there's no other way to be but me, and there is no other way for you to be you. And, you know, she obviously is like an iceberg that I know, just the tip. And there's this whole mysterious side under her. And when we talked about this show, and I, you know, asked her, you know, tell me about a time you had to be resilient, she said, stepping up to become a mom to my oldest stepson who was born with fetal alcohol syndrome. And so I invite you to listen to Stephanie story. Hi, Stephanie.

Stephanie Zhong: 00:02:03

Hey Blair! I want to say I'm so glad to be here. And happy birthday to the podcast and happy birthday to your late mama Sharon.

Blair Kaplan Venables: 00:02:12

Oh, thank you so much. Yes, this This podcast was inspired definitely by her. And you know, it's funny, like, also, my sister is getting more involved in the podcast. You know, she had some healing to do. And she can't always be here. But we're going to try and do some two to one interviews. And we have a segment called grief eagles. And I was just traveling and I like to get ahead. Like there's like 70 people waiting for me to record with them, but like life, and it's funny because I got a message from my producer saying like, so like, whenever we're gonna get the one year anniversary episode. And earlier that day, my sister tried to FaceTime me and I just got back from a trip. I'm like, I'm too tired. I don't want to do it. I want to talk to you. Like tomorrow. And then like, I was like, oh, we should record an episode. So like 8pm For me, I was like, okay, Atlanta, I want to do an episode and she was like anything to hang out with you. So. But this this episode I'm really excited about so I want to first of all, I want to thank you for sharing. Because, obviously, first of all step son, you know, being a stepmother, as I'm assuming a challenge in itself. And then navigating life to someone who is your stepson who also has FAS fetal alcohol syndrome. Let's talk about that. Why don't you share your

Stephanie Zhong: 00:03:25

story? Store. So one of the things that I never expected was I never expected to get divorced, get remarried, become a stepmother, to two boys and then one with special needs and that I live in Los Angeles. I also never imagined I would be living in the valley. If anybody knows where San Fernando Valley is. And one of the things that I think that's so amazing for me is that we've been a chosen family now for 15 years. When I met when I met my then husband, we met online on OKCupid

Blair Kaplan Venables: 00:04:15

I met Shane on plenty of fish. Ah he was on

Stephanie Zhong: 00:04:19

in plenty of fish. And then I was on salon.com had this dating app with the onion and I thought I would meet my funny funny people there you know. And then, interestingly enough, an ex boyfriend the the very first one I met on an online dating app after I had been married, I had been married with only a backup. I was I was married back when I was around 30. And I had met the love of my life. And we were together for a total of eight years. And he is a wonderful, wonderful person. And, and he was someone who both of us had struggled with family issues. And both of us had the disease of alcoholism and depression in our family. And in the end, our relationship didn't end up making it. Because I was choosing a path of resilience. And I was choosing a path of recovery. And my partner wasn't there for that same journey. And so I had actually, at that point, I had spiritually decided instead of using my head the way I used to, to analyze and decide what I'm going to do, I decided to let my body and the God of my understanding, make the just make the call. And day after day, I was waiting and didn't get any answers. And I had never really understood mindfulness or my body, I just knew that every single decision I'd made with my head prior to that, I always would look back and go, What if I had done it another way, and I wanted to make sure that this decision was clean. And so it took about nine months, in one day, I woke up making a cup of chai in my kitchen, and I heard that inner voice say, it's time to move on. And I started crying over my Chai. And I said, Alright, God, I hear you, I'm really hearing you. And I literally said this out loud, I was talking to myself in my apartment, and I said, I'll do it. And I want to just share that I'm afraid that I at 38 years old, my dream was always to be a mother. And I don't know if that dream is going to be there for me. But I'm going to put it out there that I completely surrender to you what it looks like my path with children. So I said whether I'm going to be a birth mom, or an adoptive mom or a foster mom, and I'm like foster mom was like, Yeah, foster mom, to Auntie to my god, children, teacher, whatever it is. And I never ever, ever surrendered anything, anything in my life of importance to the universe before that. Fast forward two years later, I'm on OkCupid. And I see this profile of a guy name, la, la Philly boy, and I'm in LA Philly girl. So I said, Well, I've never met another one like that. And I'm reading his profile. And in his profile, there's so many lovely things like we love this eclectic array of music, we love movies, I could tell that we would never run out of things to talk about. But he had said one factor you should know about me is that I have two boys and one is has special needs. And he is my top priority. And there were a couple of other things that I could have dissected and thought were flags. But I had decided to let the same universe the same God be my dating coach. And so I literally did dating one date at a time. And then I was kind of I thought this was just gonna be my fun person. He became my fiancee. And then I met his two boys who I was afraid to meet at first, but we fell in love with each other right away. And then we got engaged a year after. And the next morning, I woke up and I was terrified. I thought what am I getting myself into? I don't know how to be a mom. I don't know, his disability is still an invisible disability, even though about 5% of the population in North America are most likely on the spectrum. But I felt like I'm not equipped to take on this life. So that was the beginning of the story. And one of the things that I'll say is the kids were eight and nine at that time. And they and my, my husband had an ex wife that they were co parenting with. And her personality was one that I I was like, wow, it's it's, you know, all of these different pieces. You know, I'm now part of a extended team. And a lot of people who have very dramatic emotions and needs and relationships, can I handle it? And it turns out that making that choice one day at a time, and I'm reflecting now, 15 years later, I'm amazed at how God works because not only did I build resilience, but we're not for saying yes to the decisions that scared me. I don't think I would actually have the joy or the resilience or the vulner rageous Ness or my creativity. There's so many things that have come out of the hole ups and downs of being in this family and parenting that I never expected and healed things for me that I needed to heal and had struggled to heal in other ways. Wow. What a story.

Blair Kaplan Venables: 00:10:18

I love that you shared, where it started about knowing it was time to leave your first marriage and surrendering to the possibility of non traditional motherhood in the sense of, you know, birthing your own child and that your story unfolded the way it did. So thank you so much for sharing, I want to talk about you said you, you know, you got engaged, you met the kids, and then you woke up and you were scared.

Stephanie Zhong: 00:10:42

What were you scared of? I was really, so I was really scared of and I actually in terms of the order, I ended up meeting the kids before we got engaged, because I needed to get a sense that we would really work and that they would want me as a mom and I would be able to parent them. Obviously, the thing that was really scary to me is the volatility of at that time, my husband and his ex wife, their relationship, they were still trying to figure out the co parenting and there was, you know, a lot of arguments and things going on there. The kid the two kids were super energetic. I used to feel like I always when I wanted to be a parent, I always imagine I know how to, I know how to raise strong girls. But boys is a thing. I don't I don't get that at all. So it's like two boys who are just rambunctious, they're up at five, they've got so much energy, they fight like cats and dogs with each other ever since they were babies. And I think also too, it's like, Would I be able to show up and give my oldest son what his brain needed to be able to thrive. And I think I was a little I was definitely afraid of just being in a home where everyone's feelings are really, really big and can be very, very sudden. That's what my childhood home was like. So I thought I was running away from that. But now I was choosing, choosing to be in and right and this in this family. And and for those who aren't familiar of fetal alcohol syndrome, since most of us aren't, I wasn't before I met Jim, is that fetal alcohol? It overlaps a lot with autism. And I feel like fetal alcohol is something that like back 20 years ago, autism was considered kind of, you know, not just below the radar. And today, I think it's there's a lot of similarities in terms of just how the brains work and stuff. And I think I was just wondering if I would be able to, if I had the resilience to handle it. Yeah.

Blair Kaplan Venables: 00:13:02

Wow. Okay, thank you for sharing. And I mean, like, that is scary. And also, I think the like, underlying duality of the life that you had growing up and being in a situation that you're in, you know, it's interesting. And that's, I think, a whole nother conversation about like us living the lives that we had as a child. And anyway, that's like a whole nother thing.

Stephanie Zhong: 00:13:24

It's all connected. Yeah.

Blair Kaplan Venables: 00:13:25

Um, so how did you learn to navigate life as a new mother and a mother with a special needs son? Because not only are you starting to be a mom with the kids already eight, nine, but one of them is special needs? Like how did you besides like baptism by fire? Getting? But like, did you like how did you learn? How did you learn and immerse yourself in a way that you are able to support the children with their needs, and also manage and take care of yourself?

Stephanie Zhong: 00:14:02

Yeah, I think what you just named that was probably the biggest fear, would I be able to take care of myself and be healthy enough to be the mother that my son's need me to be? That's it right there. Especially if there are some there's the emotional volatility of you know, of my kid, my kids brain will have him going zero to 80 pretty quickly, and whether or not I could take care of myself when I couldn't take care of myself when I was a kid and had a parent that was, you know, very much like that in that degree. So for me, the first thing was that, you know, and this gets back into sort of what I believe about resilience is that I believe one of the strongest tools that I have, and I believe everybody has, is the ability to develop the meaning of your own story. So here's the deal. My first marriage who I said, you know, like a marriage with the love of my life. And it was absolutely devastating to leave that marriage, even though I still love this person, but that from my perspective anyway, alcoholism and Depression had hijacked my my person, and I no longer saw or could connect with that person. And what that sent me to do was that I had gone into a 12 step program for friends and families of alcoholics called Al Anon. Wow. I had 10 years in that program before I met my second husband. Not having any idea that my fear around being able to take care of myself, no matter, you know, if someone else's having a different emotion in the room, was all connected to me healing this, and being able to understand who I am be able to separate my loved ones from whatever disease or thing that they might be suffering from, and that I was more ready than I thought I was. Yeah. Wow. So

Blair Kaplan Venables: 00:16:18

allanon, you were there because of your previous relationship. And you were still in Al Anon. Right? I was, yeah. When you met?

Stephanie Zhong: 00:16:29

Yeah, I realized I was at it. Like, once I got in, and I heard other people's stories. Suddenly, all the dots were connecting backwards, and recognizing that there was alcoholism in my family. But I just had not seen it before. And so wiring is set up a certain way. And I, I need, you know, I need to daily retrain myself.

Blair Kaplan Venables: 00:16:55

Yeah. I mean, I applaud you, because like, I'm in a similar boat, I'm four years sober, because for me, it's not the alcohol, like, that's not the addiction to alcohol. But it's that alcohol is a bridge to bad decisions. And if I have a drink, there's certain things that like, I shouldn't be doing that I want to do, and I can't help it. So I applaud you. And I think that's, you know, it's really beautiful that you got to see those dots, and that you're doing what you need to do to protect yourself, and to stay healthy. What do you think Al Anon taught you that you are now applying to motherhood of someone who has fetal alcohol syndrome?

Stephanie Zhong: 00:17:31

Hmm. So good. There's so many things. The first, the first thing that allanon taught me was actually to understand who I am, when I'm not playing a role to anybody else. There's those of us that are on the allanon side, and the friends of the family student who are thinking I, it's my job to rescue, it's my job to fix things. And it's like, it blurs the line. And I realized that I had been living a good solid 30 years of my life feeling molecularly tied to like everybody around me and feeling like I'm responsible for everyone's feelings, and everybody's emotions, and then being tapped out. So the program first taught me to that their spiritual solutions, which by the way, becoming a parent has way up to my faith. And we can talk about that if we want to. But it also really taught me things like, there can be two emotional states in a room. And I was like, what you mean, one person can be happy, and one person can be sad, and there's nothing wrong. Really. That was mind boggling to me, Blair seriously, I thought to love somebody was to worry about them to mirror their feelings, right? So if they're feeling sad, let me down myself and stuff. So that was a huge, you know, having a daily practice of that. And then the second piece was really understanding who I am. And what are some of the things that I was contributing to, not just to my first marriage, or as a kid and alcoholic home, but how in people relationships in general. I am a little, you know, I was a little bit out of perspective about what my responsibility is or what somebody else's responsibility is. Right. And I had a lot of black and white thinking. So it really got me to this place where I could have grace and forgiveness for myself, allow myself to be a human being not a perfectionist, a lot of Al Anon feel the pressure to be perfectionist, not everybody, but that's that's kind of like one of the common things that can come up and people pleasing. Yeah. Yeah. Wow.

Blair Kaplan Venables: 00:19:50

Such great lessons now. I think there's people listening, who maybe have never met someone with, is it still appropriate to call it FAS? Yeah, it

Stephanie Zhong: 00:20:00

used to be called FASD. Okay, goes by F FAS, it's a spectrum disorder.

Blair Kaplan Venables: 00:20:07

So, I mean, I know that I have never met someone who I have known to have FAS, and I know there are a lot of people out there in the same boat as me. Did you have, you know, when you heard about your lover's son who had FAS, and you have a stigma of what you thought he would be like, and then when you met him and got to know him, you realize, you know, their false ideas, or you know what I mean? Like? I do, yeah, let's I want to talk about that, like, let's bid to bust some myths, because that's what we're doing here. We're sharing your story and educating

Stephanie Zhong: 00:20:41

Rustom. Let's best bust them. Yeah. I didn't have too much of a preconceived notion like growing up, I grew up in the 80s. And back then, there was a lot of attention being drawn to kids who had prenatal crack exposure. And but they didn't talk about alcohol. I'm a librarian's daughter. So when I found out my, you know, my boyfriend's son had fetal alcohol, I went to Wikipedia, and then I started, you know, surfing the internet. And what I found there, you know, what I was, what, I think I was just afraid of what I didn't know. So that's the first thing. And when I was a kid, and I was shy, I was very, very shy. I used to feel especially shy around kids who had different disabilities, it would just trigger shame in me. I don't know, it was just a thing. And so I think it was just more the fear that I might do something that would send him running off into the street, you know, because as a nine year old, you know, his, so his brain, and it's very different for people with fetal alcohol. It's a lot like autism, where there's a full spectrum. And so with my kid, if you were to see like a CAT scan of his brain, his brain would, would look like the left brain and the right brain aren't exactly connected together. And there's a lot of holes like Swiss cheese throughout. And so for him, it's like a moat, the his, he is like, most people with fetal alcohol are incredibly sweet and warm and open. And they're overly trusting. So they're kind of like little kids, where they just like will walk up to anybody and be in just like, you're their friend, period. Right. And they also are really love animals. However, the thing they struggle with is emotional regulation. If there's a negative emotion, the the fight the fight flight, you know, freeze. Yeah. Yeah, I've never seen the freeze, I wonder. But for you know, it's either going to be for for, for the folks I know with FAS, but so with my kid he as a flight, he goes into flight. So from the time he was an elementary school, whenever there was gym class, and you know, imagine to like, with his brain, it it he was still, he still couldn't figure out how to tie his shoes yet, because there's a lot of complex motor skills, we don't even realize around tying shoes. And so for gym class, to actually see potentially tie your shoes, put on different set of clothes, things like that would create so much anxiety that he would run out of the gym, and then run across this major intersection and without even looking at the traffic. And he was doing that a lot and transitions just like with like kids who have autism, any kind of transition from one place to another, you have to have a guardrail for your brain like a wheelchair for your brain. Your brain can adjust and move from one thing to another, and he simply had no wheelchairs that were helping him through his day. And so but again, by some grace of God and spiritual miracles for all the times that he ran into major traffic through elementary school, and once in a while he would still do it. He he still can do that once in a while at 22 years old. He's never been hurt and no one else has been hurt. Feel.

Blair Kaplan Venables: 00:24:21

Yeah, like, wow, I know. There's an angel. There's a team of angels looking out for him.

Stephanie Zhong: 00:24:28

Yeah, well, he actually my nickname for him is he's my angel baby. Um, yeah. There's just you know, he has this way of, you know, when he he is also an empath, and a lot of a lot of folks with FAS can can be an empath too, so he can feel like he has these sorts of special powers where we might be sitting in traffic, and he suddenly used to say She's crying, we have to help her. She's crying. And we'd be like, What are you talking about? And then, a couple minutes later, we're driving through and there's a woman who's crying in a car, like parked on the sow kind of thing. Goosebumps. Yeah. He's that person who Yeah. And at a funeral, he's like, he's like the person who is talking to the people, you talk about the grief, he gals, and like, watched him kind of ministered to people without realizing he's ministering to them. Right? Beautiful. It's pretty amazing. Then on the flip side, if it's like, if the emotion is too big, and somebody around him is really, really raging and agitated, then he becomes agitated, right? And then he might take off or do these things. So that's where, you know, he, he, he will, if he has a wheelchair for his brain, all these gifts come out. And it's amazing, right? If he doesn't have a wheelchair for his brain, then that's when suddenly like, anything could happen.

Blair Kaplan Venables: 00:26:03

So before we wrap up this interview, I what what would an example be, that is a wheelchair for his brain.

Stephanie Zhong: 00:26:13

A good idea for wheelchair for his brain is that the first thing is for people who are maybe just neurodiverse is to first get assessed to see what developmental age your brain is for all the different functions. And so once we did that, we learned that his ability to understand language was around age three. So like a toddler, right, so he's a concrete. He's a concrete thinker. So wheelchair for the brain, what I realized when he was when he would run or say, I don't know, I get emotionally emotionally agitated. We, you know, is when we're not speaking with him at where he's at. And it's kind of like, what I imagined that if you asked, you know, if you ask somebody who is in a wheelchair, I'll give you a million dollars if you swim across the pool. And then you keep expecting them to swim across the pool. And you go, what's wrong, like you can swim across the pool? There, people are gonna get really upset. And so I realized that it's not that you have to use your tone like a toddler, but that his vocabulary that you say things in ways that he can, and you have to say it slowly, so that he can hear every single word, because he has short term memory loss. Yeah. Right. So the difference is, and also with figures of speech, we realize, we say, Hey, hang on right here. That doesn't make sense to him. And that, that's what we realized was like, Oh, my gosh, we're speaking to him in a way that is not doing the wheelchair thing. And then we're wondering why things don't turn out. And his teachers are the same way. So when we started using more concrete language and shorter sentences, suddenly he becomes more vocal, suddenly, he is, you know, ready to like, he can tell a story. Yeah, you know, but in meeting him where he's at, exactly. And I think that really the training that I ultimately I started learning and realizing, you know, what everyone's brain is different. That's the truth of it. And a lot of the parenting training I, that I took to understand how his brain is and to meet him where he is, and made me realize this is something we all can benefit from with it that we work, you know, we interact with, it's like, yeah, it's just a more patient person. And I realized that my son, it's like, when he can participate as who he is. The emotions, like the the emotional behaviors that everyone thought like, Oh, his teachers might think he's a problem child. The emotions are not the problem. The emotions is just the symptom that he needs a wheelchair somewhere. And that if we took care of that, he would just chillax and then be his happy self and spreading joy to everybody around him.

Blair Kaplan Venables: 00:29:10

I think that's really beautiful. So what advice do you have for someone who's stepping into a new family? And there's someone who's in this family who who has FAS?

Stephanie Zhong: 00:29:21

So what I would say I'm gonna start with the first one, like if you have a loved one, or a friend or student or a colleague, who may have FAS and this is the this is the thing is that people, as I started to share my story, people started realizing, I think, maybe my cousin might be on the spectrum or I'm a teacher in a special ed class and it never occurred to me there might be students and as you're talking about things, there it is, is just too whether it's FAS or any other So called Disability is to just really focus on what gifts to somebody have like, look for the gifts, and learn how their brain works or even ask them and you know, meet people where they are. And just what I like to think of is everybody's brain is beautifully different. And to allow yourself to just be curious and learn and know, just like any other parent, that you will, you will make mistakes. And you can learn together. And I love that

Blair Kaplan Venables: 00:30:34

that's beautiful look for their superpowers looks for look for their gifts, and you know, figure out how you can really utilize that meet them where they are. I think that's such beautiful advice. And, you know, I feel like this conversation could go on for hours. So I want to invite anyone who wants to continue the conversation with Stephanie or explore her professional side, which you should, because she's amazing with human design, she did a reading for me, and I love it. It just helped me understand me better. All of her links are in the show notes her full bio, and I invite you to connect with Stephanie. Stephanie, thank you so much for sharing your story with us and our listeners. Thank you for tuning in to another episode of dissecting success. So thank you, Stephanie.

Stephanie Zhong: 00:31:18

Thanks for having me, Blair.

Blair Kaplan Venables: 00:31:20

And it's okay to not be okay. Life is hard. Life is beautiful. Let us be the lighthouse in the storm. You are not alone. You are resilient. Thank you.