Supporting Opioid-Exposed Children: A Conversation With Generation O’s Founders

Rachel Kugel: Hey, good morning. I’m Rachel Kugel. This is Rachel Defends You, and today I have got the most incredible guests from the most incredible organization that’s certainly near and dear to my heart personally.October is Opioid Exposed Children Awareness Month. And to that end, I have with me today Lenette Serlo and Andrea Bonhiver.

They are on the board and founding members of an incredible new organization called Generation O, and this is a nationwide organization for opioid exploit children and all of the things that they need and raising awareness.

And so I’m so excited to have them here today. Thank you so much for joining me.

Andrea Bonhiver: Thanks for having us.

Lenette Serlo: Yeah, we’re thrilled to be here, Rachel. Thank you.

Rachel Kugel: I think I told you guys my audience is generally, I’m a criminal defense attorney and I deal a lot in DWI defense.

And as a result I deal with a lot of people with substance abuse issues, as well as the people that love them. And that’s just the nature of the beast if you are in criminal defense. I’ve found that a lot of the choices I’ve made in my life kind of work together.

You know,when you get older and you start looking back on your decisions and you’re like, wow, all of this led to each other. My work deals with substance exposed people and even my personal life deals with substance exposed people, and that’s how I found my way to Generation O.

Tell us what is the story of the founding of this organization? Obviously you saw sort of a void. How did you end up creating this?

Lenette Serlo: Absolutely there’s a big void. Anything that children go through, a disease, a situation. There’s a lot of groups out there to help.

And we just noticed that there was nothing for opioid exposed children. At this point in the opioid crisis about three quarters of a million of these kids have been born exposed to opioids in utero. Some of them go through the withdrawal at birth that people have heard about, but some of them don’t.

Any opioid exposure is going to line you up for possible long-term outcomes. I personally have two children that I took home from the hospital as an adoptive mom. Johnny is 16, today’s his birthday and Jackson is five. Going through the experience of raising them, I saw the void of guidance.

These kids are intense. They don’t stop moving. It’s a different breed. The normal parenting books, their suggestions aren’t necessarily helpful for these kind of kids. And so I stumbled across a Facebook group of parents raising these kids and it kind of grew from there.

Couple of years ago I posted in the group. I’m like, who would like to help start a national organization? Several of us got together and we are from all over the country. I’m in Florida, but there’s people in New Orleans and Minneapolis and Texas and just from everywhere.

We got together when we did this. We’re coming from our lived experience and we don’t have all the answers, but we’re making great progress on putting together resources. And just the support, it can be a really lonely place to parent when you child is struggling with things that other children aren’t.

The support is a huge piece of this. Our group has grown to almost 8,000 members.

Rachel Kugel: That’s incredible. How long have you guys been around?

Like how long has it taken to grow to 8,000 members?

That group started in 2017. We’re picking up about 150 new members a month. Generation O the nonprofit started a year ago. It just shows you the need and the void. Andrea, you are not only the founding member, but also you deal in marketing and creative.

Andrea Bonhiver: I assume that must be your personal experience that you bring to it. Yes. I have a marketing and graphic design background, but I’m also a mom of a three-year-old boy who was exposed to opioids among other things.

And so I was out there looking around for some guidance and I stumbled into the Facebook group too. I actually posted one day like, Hey, I’m a stay at home mom right now, but when he is in school. I really wanna do something that helps these kids. I’ve learned so much over the last few years.

Anybody have any ideas? I’m not a nurse, I’m not a social worker. What can I do? And then when that found me.

Rachel Kugel: I should add also that I know you guys, because I am also a member of that group and I am an adoptive mom of an opioid and other substance abuse, exposed child who is now six.

So we all met in this Facebook group. Social media can be used for good or evil. And this is certainly an instance in which it has been used for good. We’ve all found each other and thank God for that.

We all come to the table with different age children, like three, six. We’ve got a teenager with Lynette. Everyone is really there to support each other and help each other. It’s amazing that from that, you know, what started out as this sort of little group of moms and dads asking questions to each other has morphed into a national organization and, God willing, a national movement to really support these kids and families.

I’m so glad that I found you guys because you’ve all been a great resource to me too.

So thank you for that over the years. I’m glad and I’m excited to be more involved with the more formal nationwide organization. I wanted to ask you, I grew up in the eighties and nineties and there was a stigma around drug exposed babies.

I mean, god forbid that the term crack baby was a thing. And I really think there’s been a shift away from that, but I do feel like there is still sort of a stigma. I don’t know that I live with and think about that. I worry that’s my daughter’s going to think about and sometimes that prevents parents, even me from maybe getting the help and support for our kids.

‘Cause if I’m gonna go talk to the teacher, do I really want to bring up this whole backstory and maybe have that teacher, you know, we all get it. I get it on a couple other levels too.

‘Cause I’m a criminal defense attorney, so I have no judgment. I don’t have a weird feeling around people who have found themselves in difficult drug situations. I get it, but not everybody has that lived experience and I worry that they’re gonna put on my daughter those kind of feelings.

 ‘Cause I know I was looking at your website and the different stated goals and the first one was about empowering through knowledge. And I’m just wondering how does that fit in? Do you guys see the stigma thing?

Is that part of your mission to do anything about that?

Andrea Bonhiver: Yeah, so we, like you said, as parents of these kids, we understand the stigma and one of the reasons we don’t typically share our kids’ names. If we’re taking in a caregiver story, we might change names or just not say them.

We use stock photography, we don’t use their pictures. We leave the discretion up to the parents how much they wanna share. And that’s mainly just because our kids aren’t all old enough to advocate for whether or not they want that part of their story shared.

And until they are, we wanna give them that opportunity. So that’s how we handle it, on social media and our website, but we get that question in the group a lot. I’m gonna go talk to my kid’s teacher. They’re having behavioral problems in the classroom.

What do I do? Do I tell them this? My thought on it is they’re a need to know person. There’s a need to know people. And then there’s people that maybe don’t need to know. The stigma kind of, I think, is imagined. It’s not to say that it’s not there, it is there, but once you share it, I feel like people are very understanding, very warm, very like, oh, I wanna know more about this and I wanna help.

Rachel Kugel: That’s typically the reaction versus like, oh, so they’re like, they’ve got all these problems and blah, blah, blah. It’s really not how people receive that information typically, in my experience. I think there’s also some misinformation or misunderstanding around the term like a drug baby or born drug addicted.

I wanted you to speak to that as well ’cause I know I had seen some videos that were created by your organization that speak to that, that I think is important.

Andrea Bonhiver: We do not use the term born addicted, that is old and it needs to go. We say born exposed.

The actual dictionary definition of addiction is a compulsion. A compulsion is involved, so a baby doesn’t have a compulsion to seek out getting high. A birth mom could. She may have an addiction and her baby is born exposed. We also don’t call a birth mom an addict or a mom of one of these children.

We just call them someone with substance use disorder. We use respectful language. We understand that anybody caught up in a cycle of addiction did not get there by choice. Some things happened in their life. They did not want their life to look the way that it does. They don’t wanna be in this situation.

So we try to come at that with a lot of grace and respect. We see born addicted a lot. But we try not to use that language.

Rachel Kugel: There’s also a lot of ways to be opioid exposed, some of which come from traditional addiction like people would expect to see, but others, there’s a lot of prescription drugs that are being given to people.

Andrea Bonhiver: There’s people that are in recovery that are using some sort of maintenance drugs. I just wanted to put that out there that it’s also possible to be born drug exposed without someone necessarily doing something wrong. It’s not always illicit.

Rachel Kugel: Illicit, that’s a good word for it. Not that it matters one way or the other. I mean, the kid didn’t choose it either way. But the point is to say that it’s a bigger issue. I think people are getting that to some extent. The opioid crisis in general is a bigger issue than people ever thought.

It’s not just affecting what regular folks might imagine is somebody using drugs on the street corner in an illicit way. But in fact, lots of nice normal regular people, people you probably encounter on a daily basis are dealing with challenges related to this. Some by decisions, some, by fates, but that’s where they’re finding themselves.

So I just wanted to say that part, out loud too. There’s also this term and I know this is used in the Facebook group a lot, the NAS baby. What do you think about that?

Andrea Bonhiver: We don’t love it. We don’t love the term NAS baby. It’s a little too close to crack baby.

And it’s also important to note, like Lynette brought this up at the beginning, that not all babies that are exposed to opioids or substances in utero have NAS. NAS stands for neonatal abstinence syndrome for anyone who doesn’t know. That is a medical term for the symptoms of withdrawal that some newborns can go through within 24 to 36 hours after birth.

Some babies just don’t. They may withdraw before birth, if their mom stops using or they just don’t have big enough symptoms as a newborn to be given that NAS diagnosis. So we would prefer a term become more popular. That’s just, you know, opioid exposed kids or substance exposed would be a better term, a substance exposed baby.

But we’re not seeing a lot of that yet.

Rachel Kugel: I think it’s also like an identity thing because when you talk about it the way you’re talking about it like substance exposed, that references a moment in time. That in theory, after facing challenges, you’re gonna have things to deal with, which I wanna get into, but it deals with a moment in time that you then have challenges to deal with versus crack baby or NAS.

You’re giving the kid an identity that then follows that kid. Which I think is what we’re all worried about because, I don’t want my child or anybody’s child to see this as an identity. And how it shape what they think their future looks like.

Because we know from the studies, or at least that I’ve seen, as I went into my adoption process, it seemed to me that most of the studies indicate that with the proper support these kids can do great and have super successful lives and live amazing. And when you see kind of bad outcomes with these kids, most of the time those outcomes are not a kid involved per se.

They relate more to staying in an opioid exposed family or opioid continued cycle family. If mom is getting treatment and back on the right path or because of adoption, child is in a more stable home. Most of the studies I’ve seen show that these kids with the right supports can do really well and the negative outcomes are less about the child and more about the environment.

At least that’s what I’ve seen. I’m certainly not trained, I should preface, lived experience and a little bit of research.

Lenette Serlo: Yeah. And what’s interesting is that the opioid epidemic is 25 years old now. These babies first started to be born and people realized we needed to look at what is going to happen to them long term, the long term that they studied was two years.

So they looked at these kids over the first two years of life and you’ve experienced this with your own child that a lot of these kids in the first two years of life don’t deviate much from their peers. But we notice in our Facebook group the reason that we’re getting all of these parents coming.

Is that by age three or four, any three or 4-year-old can be a bit challenging. But opioid exposure intensifies that challenge and the struggles that they have, they go on longer, they’re more frequent. And then there’s another whole host of things that don’t even appear in a child until they’re maybe five, seven years old. So my son who’s a teenager now at two years old, he looked like a typical child and it wasn’t until he got into school that we started to see some of the long-term effects.

Long term being two years, there are no outcomes. People ran with that. There are a lot of confounding factors that contribute. So the parents like all of us and the ones we work with in our group we’re vetted.

 Whether we’re an adoptive parent or a foster parent. We’ve had to go through the system to say that we’re okay to parent. We’re not exposing our kids to drugs in the home. We’re not exposing them to violence. We’re not exposing them to poverty. And all of those things cause long-term trauma and outcomes for children.

And so we’re like you said, Rachel, giving them this warm and loving and stable experience. And that does dissipate some of the things, but other things like vision problems that are caused by opioids, you know, it doesn’t matter where you grow up with, if your eyes were changed in utero by the opioids, they’re going to remain changed.

And so it’s interesting right now there are studies that are starting to come out that are studying these kids longer term and they’re coming out with some different outcomes. And within our group, we are just from what people are posting about. We have come to 11 different things that these kids are experiencing long term, like feeding issues, like the vision that I mentioned, the ADHD hyperactivity behaviors.

And so can they have good outcomes? Yes. My 16 year old’s getting his license today, he is gonna be able to drive a car. He had a great first quarter at school. He’s a wonderful magnetic personality. I expect the best for him, but he also has a lot of struggles. His muscle tone is super tight and he has had a lot of vision problems and, you know, there’s just things there that. The reason why we wanna give education so that people know what to look for and then how to support them.

Rachel Kugel: That’s incredible. You’ve already said things that I didn’t know. Like I didn’t know the vision stuff. I knew a little bit the ADHD to be looking for those types of signs.

But I did not know some of those more physical symptoms that you’re referring to. I personally did not know that at all. So that’s really interesting. And I think it also raises a good point too, that you kind of can’t sleep on the fact that sometimes we almost take it for granted that love can fix everything. I was lucky enough to be with my daughter the day after birth basically.

So I’ve essentially had her since birth. And so sometimes I think like she’s been with me for so long, since the beginning. It’s fixed. There’s no trauma. You think you can love the problem. And I think what you’re pointing out is really important, which is to say it’s not anything about you as a parent, it’s not a dig on anybody.

The reality is that some of these longer term things are just physical biochemical issues that are gonna be there no matter how much you love them or try to do the right thing or subscribe to all the Facebook groups and join all the organizations. ‘Cause we think sometimes as moms if I just sit in that one more meeting or attend that one more thing.

But I think it’s also like loving them where they are and not trying to make them into something they’re not. Like it’s understanding who they are, which is super cool. I’m wondering also, ’cause Lynette, your son is older and Andrea and I were talking about having them have a choice of how much they want to say or don’t say.

Could you speak at all to how he at 16 years old? I mean, I’m curious for my own family. How does he see all this and how does it sit with him? I know you’ve done an amazing job.

Lenette Serlo: Yeah. Well, I mean, I’ve done the best I can and I will say that I think the most important thing I did that you just alluded to, Rachel, is the reframing. At some point in his childhood, I reframed. Who he is and what he can do. And kind of like left the mold of this is what I want from my son. This was me from a parenting perspective and as a new parent you just do what you do.

But then I realized I need to support who he is, what his strengths are and help him with the things that he struggles with. And it really helped our relationship and it’s helped him be the best Johnny. To answer your question, I don’t know how typical he is as far as what he thinks.

He goes back and forth when he’s mad at me. He’s a teenage boy. He doesn’t really care what mom does. He’s actually home from school today since it’s his birthday. I told him what I was doing and he doesn’t care because what teenager cares what their mom does for work, right?

When I was at one point putting together a book we’d really like there to be a handbook that people can take home and read to learn more about it. And, there are stories of him in that book. And his question was, well, I get part of the proceeds then, right?

So he’s coming at it from a 16-year-old boy, when do I get the money? I don’t care what mom does, so I can’t really tell you. Like, you know, will he find stuff online years down the road and be like, oh my God, my mom was talking about me. but whether I’m talking about his opioid exposure or the fact that he did something silly with his sister, I don’t know that it weighs a lot for him.

It could be different for other kids, but that’s been our experience.

Rachel Kugel: I think that’s a win. The way I’ve looked at adoption and parenting in general, but adoption in particular, and jury’s still out. But the way I’ve looked at it is like the more you could be sort of like chill about it and have less drama around the fact of an adoption, the fact of an opioid exposure, the less drama around that, the better.

So it sounds like that’s his life and that’s who he is. It doesn’t have this whole you know, because people go through a lot less. I have a biological child that was born with Clubfoot, and he is fine and it was fixed.

But you know, there’s kids who can identify with that their whole lives and let something like that hold them down as disabled or whatever, you know, however they wanna look at it. I think the less drama around the thing, the better if possible. I mean, that’s been my outlook. I don’t know.

Like I said, we’ll see how works. We’ll reconvene in 15 years and all that. But that’s been my philosophy overall. Like we’re very open about the adoption. We’re very open about the circumstances, and we try to be like, it’s not a big deal. This is how our family was created. This is your circumstance.

And listen, in this day and age, kids have so many challenges. Like so many kids have IEPs, so many kids have ADHD. So many kids are on the spectrum in some way. So biological, adopted, drug exposed, or not, lots of kids have something from a nut allergy to somewhere on the autism spectrum.

Kids are in a date. We’re looking for it more. I don’t know, maybe.

Andrea Bonhiver: Well, it’s encouraging ’cause it just means there’s more support. We’re recognizing it and there’s more support available for all these kids that have different needs.

Rachel Kugel: I wonder too, like you were talking about that it’s now 25 years old and that so much of the original research and awareness was around infants.

You know, that NAS when they’re first born. I was thinking about that and prepping for today that you’re a hundred percent right. Because when my daughter was born, the nurses had specific protocols and there was all kinds of research about it.

She was born in a hospital that had seen a lot of opioid exposed children. So the nurses were like, they had different kits that had lavender scented lotions that they would give and they would tell us about different feeding techniques and different holding type. I mean, they were into it and they knew how to support her.

They set us up for that. There was a lot of research around that first 30 days to 12 weeks. Even when we got home, the pediatrician like, you know, how to wean from there off, you know, she came home still on some medications and whatever. In any event, there was a lot of research and information around that first 12 weeks or so, and then you’re left alone. Then they basically are like, okay, you know, all is over. Good luck to you. Like going about your way and you’re a hundred percent right. There really is nothing, I don’t think people realize there’s really nothing after that. A ton of research in the beginning and nothing for after.

And you’re a hundred percent right about that. I wonder why that is. Why was so much of the research and information? Why is there such a focus on newborns? Do they just think it’s over and that’s the end of it?

Lenette Serlo: It’s frustrating Rachel, ’cause I talk to research scientists in this field and when they talk about the effects of opioids, they are just so hyper-focused on whether it’s gonna cause NAS or not, and let’s use this treatment because it shortens the hospital stay.

I’m like, you guys are completely missing the boat because what happens in those first 30 days it’s super important, but compared to what happens for the rest of their life, I mean, it’s just a blip. There are studies going on now. In fact, we’ve been lucky enough Generation O to be on the liaison board of this study to give our lived experience and input on how the study’s going.

But they have a cohort of about 7,000 kids at 27 locations around the country. Closest to you is New York Langone. So that’s one of the study sites and they are studying specifically substance exposed infants.

All substances, but they’re recruiting specifically opioid exposed as well. So they’ve got hundreds and hopefully at some point thousands of kids that they’re going to follow long term. And right now it’s a new study, so the kids are really only two, three years old, but eventually they’re gonna be studying them when they get older.

And it’s an NIH funded study and it’s robust. And so when those results come out, whatever they are. That’s what people will go by. But by the time those results come out, our kids are all gonna be teenagers and we can’t wait for that.

We can’t wait for the support that they got at the hospital, which are amazing. We need to build those supports out throughout their entire childhood.

Rachel Kugel: It’s a really good point. And I wanted people to know that because I don’t think people realize how much they give you in terms of support in that hospital setting.

They have a ton of information about it, and they give you all these tips and techniques and things. There was a ton of support in that hospital for that first 30 days. And even, for that first 12 weeks, our pediatrician calling all the time and how’s she doing on this weaning?

And the whole thing. But you’re right after that, it’s just like go off into the world and I, and there’s so much support for like, fetal alcohol syndrome, for example. There’s like so much research and support around that, or even because of the eighties and the cocaine and crack epidemic.

There’s a lot of information around those things really, despite how huge the opioid crisis is, to the point where it’s on everybody’s mind affecting every aspect of politics and policy. Immigration, like everything. And without something like you guys, without something like Generation O out there, these kids are floundering around basically.

In good meaning, parents don’t really even know there isn’t the support there. They don’t even know what to do if they want to.

Andrea Bonhiver: Well, I would say as a caregiver, I was a first time parent, when we adopted my son. He was born in a state that’s been hit pretty hard by the opioid epidemic, but the NICU stay was 12 days and there wasn’t a lot of support or guidance given to us about what we should be doing when we go home.

It was pretty standard like this is what we do for these kids. Boom. Okay. And then when he was well enough, they were like, he’s well enough this is as good as it’s gonna get here, I think. So we’re gonna send you home. They take pictures of us with him in the carrier and wish us well, and then we get home.

We went into this with the mindset that once NAS was done, once withdrawal was done, he was gonna be a typical kid. It was never really communicated to us that his infancy is going to look a little different probably than a typical baby and what you might be expecting. He may have different needs and he absolutely did.

Withdrawal can last up to six months. Withdrawal symptoms can show up for up to six months, and people don’t realize that NAS time period is sometimes 12 days, sometimes it’s 30 days, depending on how it’s being treated. But you can see this stuff for months. I’m dealing with all these challenges with my newborn.

I’m a first time mom. I feel helpless. I don’t know what I’m doing. I’m going on the internet and searching like neonatal abstinence syndrome, pediatrician opioids, pediatrician substance exposure. I am not finding anyone. I am back in my home state. That hasn’t been hit super hard by the epidemic, but it’s definitely here.

I live in Minneapolis soI just wasn’t finding anybody. I learned there’s no certification for pediatricians. There’s maybe some continuing ed here and there about this kind of stuff, but this epidemic’s been going on for 25 years and we don’t have experts for caregivers to reach out to.

And that was so infuriating to me. The best I could do here was get an appointment with one of the physicians at the Children’s Hospital NICU. And have her just take a look at him, make sure he is okay. Give me some information. That was where I was referred to early intervention.

I didn’t know early intervention was a thing. I didn’t understand what it was, but she gave me a pamphlet and I reached out to my school district and we started getting visits from a speech therapist, a physical therapist, and an OT every other week. This is the kind of stuff that I was tenacious about finding help. I didn’t know where to look. By the grace of God, we found early intervention and they helped us understand what we needed to do. But parents don’t know. Parents have absolutely no idea unless you tell them what they need to do.

And when we send them home with a baby that’s struggling. It’s unfair to the child, it’s unfair to the parents. We are leaving them completely in the lurch desperate for help. ‘Cause we know when something’s not right and our kid is crying around the clock and we don’t know what to do.

This is the kind of stuff people come into our group talking about all the time. The other point I wanted to make too is we have birth parents in our group as well but there are studies that show by the age of nine, most of the kids that are born opioid exposed are no longer with their birth family.

So that is why, I just wanna acknowledge birth parents in this conversation, but also say that is why a lot of our work, we’re talking about foster and adoptive care, because that’s a lot of what we see in this population, unfortunately.

Rachel Kugel: Well, that’s really interesting.

And it’s something that really jumped out at me because, like I said, there was a lot of support at the beginning, and now as you get into school and all of that, there’s support, but it’s like different, right? There’s support that’s designed for everyone in the sense that people have IEPs and you have to ask for that, and you have to, you know, but again, there’s so much that goes into this because there is that stigma piece.

There is that, you know, do I talk about it there? There’s layers to it. And like for me, for example, we had difficulty getting early intervention, to be honest.Our daughter was, well, first of all, it was COVID, so a lot of it was online, which wasn’t super helpful. Secondly, she was born in 2019, so it was right at the beginning of that.

Here in New York you didn’t get interventions unless you had a 30% deficit. I believe it had to be 30% behind.She didn’t qualify for that much. She was great but a little bit behind and could have used those supports.

And it wasn’t just behind. I actually think I’m probably using language that’s not the right language around it. I mean, I wouldn’t even just say it was like a delay per se. It’s like her brain operates just a smidge differently.

We like the term developmental differences or developmental delays.Not necessarily for better or for worse. Our story is that we have an adoptive daughter, and I also was pregnant around the same time. So we have two children that are five months apart. So for all intents and purposes, they’re twins, right?

I always joke that one of them is adopted and I forget which one. The point only is to say that there are things that, you know, he my son was born not drug exposed. And there are things that he can do that take her a little, you know, you can see the processing is different, but by the same token, there’s things she’s incredible at that he totally doesn’t have or do.

 Like particularly, I don’t know if you guys find this with your kids, I wonder if there’s something to it. My daughter is extremely charming. Charming to the point I have four kids, like she’s charming at a level that’s not normal.

People love her, we walk down the street to walk to school and everyone like she’s running for mayor is the joke. Like everyone knows her. Everyone stop to talk to her. There’s almost like a social or emotional intelligence that she has that my son at the same age doesn’t have yet.

You know, she knows how to get what she wants, how to charm somebody. It’s unbelievable. And she gets away with a lot because of it. She could have some bad behavior and she’s still so loved by everyone. I don’t know if that’s part of opioid exposure.

Andrea Bonhiver: There’s no research to prove it, but.

Lenette Serlo: Well listen to this study. this is a study on mice or rats with opioids and a lot of that stuff translates. I do think that we’ve talked about it in the group before, that this magnetic personality thing, it’s a thing.

There’s definitely a higher percentage of our kids that have it, but this rodent study, they gave a set of rodents opioids through mom’s breast milk. They were getting it like a pre-exposed thing. They separated all the animals and then when they put the animals back into the population of their peers, the ones that were opioid exposed, were the most popular.

All the other mice wanted to be around them, and I did not question that for a second. When I read that study, I’m like, it’s so true, because just as you said, we’ve called Johnny the mayor so many times, and it’s not all kids because my younger kid doesn’t have it, you know? And what I’ve found sad and interesting is that my older son with the magnetic personality, he hates to share.

He doesn’t always work well, like when people come to the house, they can’t touch anything. Like when he was littler, you know, but he’s kind of a jerk as a friend and he gets away with it because he has this huge, awesome personality. Well, my 5-year-old has the same stuff.

He won’t share. He’s kind of a jerk, but since he doesn’t have the magnetic personality he’s having trouble making friends. It’s so interesting because they were both exposed to opioids, but other things. And they’re different people, you know, so everything’s gonna hit differently.

That magnetic personality is a thing.

Rachel Kugel: It’s funny ’cause we worry about them, obviously and you worry about supporting them. But at the same time, my husband and I will sometimes say as much as we worry about her, I would not be surprised if she’s our most successful kid.

Just because she might struggle with in like a classroom setting maybe, or that kind of like authoritative, like she does struggle in that kind of setting. But that personality I feel like that can get you far in life. Your ability to get what you want maybe start a business or do something incredible.

Andrea Bonhiver: To some extent the challenges these kids have can also be the thing that can propel them forward and then make it all make sense. This is why you were born into this situation. You had some job to do. That’s kind of exactly how we framed our October awareness campaign too, for National Opioid Exposed Children Awareness Month, We do 31 days of understanding and education on our social media.

So every day we’re posting information about the 11 long-term effects that we’ve seen and general resources for parents and things like that.

Rachel Kugel: Well, I should say also, we’re all wearing pearls today because that’s part of the October awareness,

I think men are bow ties and women are pearls.

Andrea Bonhiver: Yes, we have pearls and bow ties. And for a $25 minimum donation to an organization, you get your own set of faux pearls and a bow tie during the month of October. But yes, our campaign took those stereotypical statements about opioid exposed kids.

Like they’re hyperactive. They never stop moving. They’re exuberant. They’re kind of just like so a lot sometimes. And we flip them on their heads with positive statements. Every week we’re sharing, we’ll start the week with a statement like that, like opioid exposed kids or the kids of generation now are vibrant.

Vibrance is a great word. They are joyful, strong, loved, resilient. They’re all strengths. And we have to remember that. Their uniqueness is their strength too.

Rachel Kugel: I think pearls and bow ties are a good choice as well, because those are not quiet.

Andrea Bonhiver: No. You don’t see people wearing them all the time.

Rachel Kugel: And same with a bow tie for a man. Like these are statement pieces. Like these are not quiet little pin.

Andrea Bonhiver: Well, yeah, the symbolism in it is pearls represent beauty under pressure and refinement.

And then bow tie ties represent uniqueness. And they have since the 1800 basically. So yeah.

Rachel Kugel: That’s such a good sentiment. I know you started with some of the stuff about the eyes. Can you speak a bit to some of the challenges that you’re seeing?

Andrea Bonhiver: Yeah. So if you go to our website generationo.org, under the kids, you’ll see The Constellation of Symptoms. These are 11 symptoms that we see in our Facebook group of caregivers coming in, talking about these things.

Rachel Kugel: But also we have found studies that are also in our website that I would say most of them are correlations, meaning that they’re not definitive causations tied back to opioid exposure, but research is still ongoing, so there’s a good possibility that these things are connected. The 11 symptoms we see are sensory processing challenges, developmental differences and delays, vision problems, ADHD and executive function weakness, muscle and motor diagnoses, anxiety and chronic nervous system dysregulation, speech and language delays, trauma responses, academic difficulties, sleep disorders, and feeding challenges and gastrointestinal issues. Those are just to some extent anecdotal, like you guys are compiling that over what you’re seeing.

Like that’s Generation O’s work basically.

Andrea Bonhiver: Yeah. We’re compiling that and then we’ve gone out and looked, you know, are there studies connecting any of this back to opioid exposure? And again what we find in the research often the hiccup for us is those confounding factors. Researchers are often reluctant to say it was the opioids.

Because there’s always those factors of are they in poverty? Are they getting good supports? What’s their home life like? What was the story? Or even in an adoption or foster, what’s the story leading up to that? Yes, exactly.

Rachel Kugel: There’s also probably less so than in fetal alcohol syndrome. Somebody’s an alcoholic. They’re an alcoholic. That’s what they’re into. Whereas with drugs, it’s probably rare to get a pure. Where you can be like, this person took heroin and that was it.

Andrea Bonhiver: There’s so many different opioids. Well, it’s true. I mean, there’s a lot of fentanyl right now but what we’re seeing in some studies is we are able to parse out some different reactions to opioids, especially in the NAS situation.

If your baby has a withdrawal from opioids, there’s actually a term neonatal opioid withdrawal syndrome. That withdrawal looks a little bit different when opioids are in the mix, even if it’s polysubstance exposure than it would without. So they are able to pick out some different things that they’re seeing now with fentanyl, heroin, and opioids.

Even if there is polysubstance exposure.

Rachel Kugel: That’s interesting. So I can see how, in terms of the different positions that you guys have or the different missions, you know, empowering through knowledge. I definitely get it from this conversation, you know, the driving transformative change, like totally.

You guys are participating in these incredible studies, you’re really out there advocating. Talk to me about the third one, which was about enhancing community supports and resources. What resources are out there if someone’s watching this and they’re an adoptive mom or a biological mom, or a grandma who has a kid whatever the situation.

They wanna support someone going through this. What can Generation O help them do?

Lenette Serlo: The best resources we have right now are all virtual. What we like about that is they can help the most people by going to generationo.org. It’s a pretty comprehensive website and there’s so many resources on there.

You can listen to a podcast, watch a video, read a blog, and learn a lot about what’s going on with these kids. At the same time, we are opening offices in different locations. Right now we have a center in East Tennessee and we’re working on one in Las Vegas and one in southwest Florida.

And in these locations the idea is it would be an on the ground person, where you can get one-on-one support, you can get access to your local resources, and that’s still coming through the pike. But like I said, right now, there’s tons of information on the website and through their website at generationo.org, you can get to this Facebook group that we are all in, which we all know how valuable that is.

Rachel Kugel: It really is, having that support is invaluable.

Andrea Bonhiver: Yeah, we also host a monthly webinar called Insights Live, where we bring in an expert on a different subject, usually tied back to one of those 11 symptoms, every month that caregivers can come to. It’s free. We promote it on our website and on our Facebook page.

We’re also on Instagram and YouTube. And then we share some of those insights, live webinars on our YouTube page that you can watch later if you’re not able to make it to that event. And then on our website we have under the resources tab, we have a link to help you find early intervention resources in your state.

We also have an area for caregivers to hear each other’s stories. We shared a lot of personal stories last year on our social media and we’ve uploaded those to our website. Caregivers talking about what it’s like to raise these kids. Some blog posts going through experiences that maybe other parents aren’t going through, but you are.

We have some principles. We also have our playbook for opioid exposed children and that’s on our website as well. And that kind of goes over, who we are as an organization, the 11 symptoms, how we got here as a country. Some of the policy points we have that we would like to see changed nationwide.

As you know, the opioid settlement funds have filtered out to the states. We would like to see some of that disseminated to help the children.

Rachel Kugel: Is it being, I’m curious.

Andrea Bonhiver: Not typically. We’ve met with a lot of state opioid abatement boards advocating for some of those funds to be allotted to organizations like ours.

We haven’t received any abatement funds, but we’ve been advocating for whoever is working with children to get some of these funds. So, yeah, there’s a lot of great resources on our website and we love being online ’cause everybody’s there.

Rachel Kugel: Yeah, no, it is. And it’s real, like I said, you know, some of these issues with kids have been around a long time, like fetal alcohol syndrome and there’s a lot of resources around it.

And I know that there wasn’t a lot of resources, like you definitely fill a void because there wasn’t a lot of support groups, there wasn’t a lot of resources. If I had known about you guys when my daughter was a baby, I might have been able to get her more supports and more intervention. I didn’t know how to advocate for her because they were looking at her like any other baby.

Andrea Bonhiver: They weren’t taking into consideration. So I didn’t have the skills or the language to advocate. Which I might’ve been able to get her more earlier. One big reason for that is something that we’re passionate about, once a child gets an NAS diagnosis or they just have substance exposed infant in their chart.

It does not follow them. There aren’t built-in tests that need to happen. When a child is getting a little bit older, it’s just like something that happened in the past. So we are really passionate about working toward a diagnosis like FASD for children who have been polysubstance exposed, specifically opioid exposed.

‘Cause like I said, we are seeing specific things happening with these kids. Because then we would have a reason for a pediatrician to ask how’s their vision. My son was diagnosed with nystagmus at two. He had been having vision issues that whole time that could have impacted his development, his speech development.

But no one thought to ask until I brought up, you know, I’m kind of seeing some weird stuff. His eyes are moving. He is looking at the TV sideways. What’s that about? But had he had a long-term diagnosis like that, there would’ve probably been a short list of things that they would’ve looked into.

Rachel Kugel: Pediatrician would’ve had a sort of, we would love to scare. And also the same thing with the interventions though. Like if there had been a standard of care, you know, me saying I’m seeing a speech delay and maybe it’s not exactly at 30%, but given the history.

Andrea Bonhiver: I’d like some assistance, please.

Rachel Kugel: Yeah. exactly. So I feel like it’s definitely a huge help. The only potential negative, and I think we can fix it right now as I think we have to some extent, is by giving them a diagnosis that follows them. Are we creating any kind of stigma? And I just wanna encourage, and I wanna leave it on this super high wonderful note.

For anyone who is thinking of parenting, adopting, or fostering, I just wanna be very clear that we face these challenges and you care very deeply about your kid and you wanna give them the absolute best.

And that means sometimes even going above and beyond for that kid. But these kids are wonderful, are wonderful to parent, are incredible. The daughter’s literally the greatest thing to have happened to our family ever. So I just wanna be clear that it’s not. That’s so much of a challenge that you shouldn’t do it.

Andrea Bonhiver: Absolutely. And that’s one of the reasons people don’t wanna talk about this too. They’re afraid of that becoming a reason people don’t wanna care for these kids. But my goodness, my son is the most joyful, hilarious, giggly, silly kid. And like you guys both said, everywhere we go, people are like, hi.

They just wanna say hi to him because he is so sweet.

Rachel Kugel: There’s something about that, and I just wanna reaffirm that because I don’t want people to hear what we’re saying and be scared off either.

Everybody has their challenges. We all have our things to bear.

And this is just one of ’em, but it’s one that with organizations like Generation O is something that you can live with, overcome, and continue to do better every day. How can people get involved? I know you mentioned the website. Give it all out so that people can find you and I’ll link it in the show notes and on the website and stuff.

Andrea Bonhiver: Yeah. Well, we’re at generationo.org. It pretty much is on the website. We’re on Instagram, Facebook, LinkedIn, TikTok, all the things. I would really just recommend the website. It’s our hub.

Rachel Kugel: Right. And in terms of what you guys need going forward, you know, it sounds like there’s advocacy for studies and getting people involved in those studies is one thing. Obviously resources, like financial resources, you need money.

 What does Generation O need to keep doing its work? Like what’s your guys’ mission for this year ahead?

Lenette Serlo: Well, I think right now we’re operating as a bunch of volunteer moms. And we’ve done some amazing things in the last year.

We’re lucky enough that as adoptive moms, we all have these new talents like Andrea’s creative design and I’m able to talk with scientists and researchers. We’ve come a long way in our first year and a half. But I’m not sure how much further we can get without a team behind us.

And in order to have a team, we need to pay them. So financial resources is probably our biggest current need. We do have a volunteer that’s working with grants and we’re doing opioid funding. So we’re going at it in every single instance.

But there’s so many things we wanna do. We have a volunteer who’s reaching out to some of the attorney generals and getting us meetings with them. We’re not waiting for funding to do our work, but we’re gonna tap off at some point.

Rachel Kugel: Moms will get it done. Nobody will get it done like your mom. Well now,I’ll leave you with saying that now you have a lawyer that can help. Let me know if I could be of service. I’m excited to be involved going forward.

I’ve been involved in the group and sort of on the community side, but I haven’t really been involved with the organization and I’m excited to be. We had talked originally about the law firm wanting to do some charitable donations this year and I would love to give back in that way.

I think it dovetails well with the type of work that I do in my law firm to give back to people that are on the other side of what sometimes is my work, right? And so yeah, I think it would dovetail well also, I’m excited to be involved in that way. As well as,when you need another mom or a lawyer, mom, let me know and I’ll be happy to be a part of that.

Lenette Serlo: Absolutely.

Andrea Bonhiver: And for October, wear your pearls. Go donate 25 bucks. That’s nothing. 25 bucks and get pearls. Thank you guys so much. I appreciate you. Thank you for having us.

Lenette Serlo: This is wonderful, Rachel. Thank you so much.