Supporting Children with Prenatal Drug and Alcohol Exposure – Brain First

Episode Transcript

Dr. Nicole Beurkens

Hi everyone, welcome to the show. I’m Dr. Nicole, and today we are going to talk about Fetal Alcohol Spectrum Disorder, and how to approach this often challenging condition in a way that actually leads to improved brain development and function for those affected. I find that this is a really misunderstood condition, yet it impacts so many children and families, so I want to shine a light on the very real issues these kids in their parents face and provide hope that there are many things we can do to support improvement. It requires us to look at things through a brain versus behavior lens, which should sound very familiar to you if you have listened to any other episode of this show, or are at all familiar with my work. Whether you have a child diagnosed with FASD or not, I really want to encourage you to listen to this conversation. The things we are discussing apply to all parents and kids in some way, whether you have a child diagnosed with a specific neurodevelopmental condition or not. Our guest today is Eileen Devine, a therapist with extensive personal and professional experience around this topic. Let me tell you a little bit about her.

She’s a licensed clinical social worker living in Portland, Oregon and has over 20 years of clinical experience. She’s also the mother of a teenager with Fetal Alcohol Spectrum Disorder, a serious brain-based disability that has challenging behavioral symptoms. She believes that when we understand the way a child’s brain works, we then understand the meaning behind challenging behaviors and begin to see them as symptoms of a child’s differences. Through her work with parents, Eileen has created the Resilience Room membership community and the Brain First Parenting Program, both designed to support parents in their unique parenting journey. In addition to her one on one and group work with parents, she also facilitates dozens of workshops and trainings a year and is an instructor for the CASE Institute’s Training for Adoption Competency Post-Masters Certification Program. Such a wealth of experience. Eileen, it’s a pleasure to have you here. Welcome to the show.

Eileen Devine

Looking forward to this conversation, so it’s good to be here.

Dr. Nicole Beurkens

It’s great to have you. And when you reached out, I was really glad that you did because this is a topic I’ve been wanting to cover on the show. It’s something that impacts a lot of families, whether they realize it or not. And your blend of personal and professional experience is really what I would like to spotlight here on the show, so it’s great to have you. I want to start out by actually having you share your story of what led you to be doing this specific type of work.

Eileen Devine

Sure. Thanks so much. So I have, as you said, a teenager. I actually have two teenagers. So I have a son who is 14, and he is a biological child. And then I have my daughter who’s 13. They’re 15 months apart. And we adopted her at birth, she came into our life very suddenly. That’s a whole other story for another day. What we understood really quickly, because we had this almost side by side comparison, was that her development just was not typical. It was not progressing in the way that our son’s was, and that made us curious about what was happening. So making a very long story short, we were able to get a diagnosis of Fetal Alcohol Spectrum Disorder for her at a very young age. I did not understand how fortunate I was at the time to have that diagnosis so young. And that was great, I thought, okay, we know what it’s called. I’m a social worker, my husband at the time was an educator, we thought “We got this, we can figure this out.” And everything that we read about it, of course, being like good parents are, just diving into the material, was all of the things that she’s going to be at risk for in her lifetime. All of what I see as symptoms, they were describing them as very challenging behaviors. All of those and how those would likely escalate over time. And the only advice they were giving us through all of this material was: A good supportive, loving environment is important. And I thought, well, we have got that covered very well, and it is not working. It is not working. So the very good parenting techniques that we were using for our son, that were helping him develop in the way that we would expect, were not working for her and in fact started to make her, and in fact, started to make her symptoms, those behavioral symptoms worse. So that didn’t settle with me very well, I wasn’t satisfied with that. And so it led me on this path to figure out, well what does work? And that led me to the neurobehavioral model created by Diane Malbin. I was able to do a year-long internship with her so that I could then begin to work with parents, utilizing this model. And so I was doing clinical work long before I was a parent, actually. But once I had this information, and I recognized how desperately other parents needed it, I thought, well, maybe that’s my new role, maybe that’s what I should begin to do. And so I’ve been doing that ever since working with parents who have kids with FASD, either suspected or diagnosed, and then parents of kids with all these other types of brain based differences that have challenging behavioral symptoms.

Dr. Nicole Beurkens

Awesome, always amazing to me how the personal and the professional intersect for so many of us around our journey with these things. Before we get into the specifics of more of a brain-based approach and all the things that fail these kids, and also the things that we need to do to help these kids. I want to pan out a little bit and for our listeners, just spend a few minutes really talking about what Fetal Alcohol Spectrum Disorder is. You mentioned in your story that you realize now how lucky you were to get that diagnosis early. So let’s talk about what often goes on in the diagnostic process here. And why it is that there may be listeners parenting kids whose prenatal exposure to substances is an issue for them, and they’ll never know for sure or they may never get a diagnosis. So let’s really talk about what we mean here when we say FASD?

Eileen Devine

Yeah, so Fetal Alcohol Spectrum Disorder is just that, it is a spectrum. So that’s really important to understand. There’s kids who look very differently with the same diagnosis because they’re somewhere different on that spectrum. And it is caused by prenatal alcohol exposure. And so that can be over the course of a pregnancy, it can be at one particular point in the pregnancy. We know that the consumption of alcohol prenatally has an impact on brain development. And so what that looks like then for that child, is that all of those seemingly easy brain tasks that our brains do for us, assuming that folks who are listening are neurotypical, that’s a big assumption, right? Making all of the things that we do without thinking much, much more difficult for them. And so when they can’t do the thing that they’re expected to do, then that creates this poor fit, and we see that poor fit exaggerated and reflected back to us through behavioral symptoms. Now, you mentioned the diagnosis piece, it’s very difficult to get a diagnosis, and the reason for that is that most places will require there to be confirmed substance exposure. If, for example, we have an adoptive family and the history is not clear, the prenatal history, there’s nobody to check that with, or there is the birth family involved, and there’s a report of no alcohol use, then that diagnosis isn’t going to happen. We know that people, all of us under report how much we drink, how much we use, it’s no different, especially with the amount of shame that comes along with that, the amount of blame that comes along with that. Of course, there are very good reasons why a mother in that situation may not report or may deny use. What I say to parents is if you understand that something is different with your child, in terms of their development, if you understand that they are challenging in ways that are beyond the typical challenges that we would expect at that particular age or whatever it might be, that’s all you need to know to start to consider that there might have been something different going on with brain development, and parenting them differently in light of that. So not working harder. They’re already working incredibly hard. It’s just taking that information, shifting it to a new lens, so that then they can work differently. So as you noted, this Fetal Alcohol Spectrum Disorder specifically is under diagnosed. There’s estimates that up to 90% of folks who actually have this diagnosis are not diagnosed. A very common misdiagnosis is ADHD. There’s a lot of overlapping similarity there. And we also know that FASD, the estimates are that it’s two and a half times more prevalent in our communities than autism. So if you think about that, to me, that’s mind blowing. We hear a lot about autism. We see a child who is maybe behaving in a way that we don’t think is typical. We think, “Maybe they have autism”, right? But we rarely, if ever, think about Fetal Alcohol Spectrum Disorder, and I believe it is because of the stigma around it, the lack of education around it and all those sorts of things.

Dr. Nicole Beurkens

Absolutely. I want to spotlight too, that the term or even the diagnosis, Fetal Alcohol Spectrum Disorder is relatively new. Even back when I was doing my training, the spectrum piece of it was not a piece of it. So there are a lot of people still with outdated ideas around what this is. They think about what we used to call fetal alcohol syndrome, which was this very specific criteria around facial abnormalities, a child looking a certain way, being very cognitively impaired, behavioral challenges, and this idea of a spectrum that as you so beautifully put, these kids can present in lots of different ways. They can have different physical features, they can present with no cognitive impairment, versus more profound cognitive impairment. We have a much better understanding now that this is a spectrum of presentations. And I think that’s important for people who don’t understand, because it’s different than maybe what they grew up thinking, or older information that’s out there about this.

Eileen Devine

That is correct. Yes, so most individuals with Fetal Alcohol Spectrum Disorder do not have the facial characteristics that you are referring to for the syndrome diagnosis. And even those who do, like my daughter, for example, did, but she is slowly growing out of them. Even as an adult, those same kids with that diagnosis, that may not be prevalent in their facial features. Interestingly, Canada and Australia have done away with fetal alcohol syndrome. They only have FASD to encompass everyone on that spectrum. I have parents that I work with whose kids have Fetal Alcohol Spectrum Disorder. They look neurotypical, they look like their peers, there is nothing that looks different about them, even though they have this significant difference, except for their challenging behaviors that, of course, makes them stand out. And in those cases, sometimes not all the time, they may even be performing well, or at grade level, or above grade level academically, which confuses things even more. It’s like, well, they can do the math, they can do the reading, why can’t they just behave? Why can’t they get along with their peers? Why can’t they listen? Why are they always so defiant, right? And so really having folks raise the awareness of this spectrum disorder, the academic performance does not equate in terms of those other cognitive skills, there’s lots of education to be done, not just for the general public, but for the parents that I’m working with as well. And there’s so much relief, once they start to understand, “Okay, this is what’s going on. This is how I can actually make a difference and help my child settle in their environments.”

Dr. Nicole Beurkens

Yeah, because I think that’s so frustrating for parents of these kids who don’t clearly fit in another diagnostic category, right? They’re not autistic, they usually end up with a diagnosis of ADHD, maybe a learning disability or something, but even then parents are like, “This doesn’t fully capture this either.” And so I think whenever we are in that situation, clinically, how I look at that is when I get a kid who’s been through evaluations, who’s been given various labels, and you look at them, and you hear the history, and it’s like, none of this is exactly fitting, that’s when we start to think about, okay, something happened here, whether we are ever going to know exactly what it is or not, something happened that impacted brain development from very early on. And I do think it’s a relief for parents to know that, okay, it’s not just that I haven’t read enough books about parenting a kid with ADHD, or it’s not just that my kid is intentionally being the most difficult kid the school has ever seen, that there’s something brain-based here going on, and I do think that’s important for parents to know.

Eileen Devine

Yeah, oh, I think it’s essential, because then what it helps us do is instead of looking at our child through a behavioral lens of “Why can’t they do better? Why aren’t they just behaving, showing respect, being responsible,” whatever it might be, it helps us then look at their differences as a physical disability. That’s what it is. Our brain is largely invisible to us. Most of us have the privilege of never thinking about our brain and what it does for us every moment of the day, but if we have a child whose brain works differently, it’s been changed in function and structure, and neuroscience research shows us that without a doubt, there’s physical evidence of that. Then we know, okay, we need to provide this child accommodations, just like we would any other child who has a physical disability. Now the tricky piece, which any of the parents listening to you who are in this situation could tell you — I certainly could tell you, even doing this work professionally, is for us to remember that, right? So we have a child in whom we are seeing these challenging behavioral symptoms, always taking that step back so that we can get a hold of our reactivity, the very human, natural, understandable response to those challenging behaviors, and say, “Okay, what if this has to do with their lagging skills, if their brain works differently, what would I then do differently? Right?” It sets us down this whole other path that is more empathetic and compassionate and connective, then it’s like, I’m just going to reach for my power, and try to do everything I can to just make this behavior stop. I think we all know where that puts us, where we ended up there.

Dr. Nicole Beurkens

Yeah, with any of our kids, right? I want to go more down that path, but I do want to touch on one more sort of basic element of this when we are talking about kids. The term is Fetal Alcohol Spectrum Disorder, but I would love to have you touch on the component of other prenatal substance exposure because this is the same category of what we are talking about, even if it wasn’t alcohol, correct?

Eileen Devine

Yes, absolutely. And I can say from working with many, many parents who have kids who have different prenatal experiences, and have been exposed to different types of toxic stress, the behavioral symptoms in their children look the same. Each child is of course unique, but there’s large amounts of overlap there. And so things like prenatal exposure to other substances that can change the structure and the function of the brain, prenatal exposure to stress. So mom is in an abusive relationship or living in poverty, or just under some sort of chronic immense stress. That can cause changes in the structure and the function to that baby’s brain. Other things like traumatic birth, so that’s not prenatally, necessarily, but that can cause changes to the brain. So there’s over 40,000 different reasons that research has documented why someone’s brain can be changed in function and structure, which every time I think about, I think it’s amazing that any of us are considered neurotypical.

Dr. Nicole Beurkens

Sounds silly, doesn’t it?

Eileen Devine

Exactly. So I have lots of parents who come to me, both adoptive parents and also biological parents saying, “I don’t know what it is, I don’t know what the cause is, I just know my child is incredibly challenging.” And I say to them, I understand the need for a diagnosis and wanting that, and there are reasons why that’s important, of course, for medication management or benefits or whatever it might be. But for your day-to-day parenting of your child, just understanding that their brain works differently, or allowing yourself to believe that, so many times that’s where we need to start, so that we can move down this other path in terms of parenting them differently, that’s all that’s needed. Because the brain really is the organizing principle. If it’s been changed, no matter why, we see that through behavioral symptoms, accommodations are what’s needed to help that child settle and be more successful.

Dr. Nicole Beurkens

Absolutely. I want to touch on some of the common challenges or symptoms. I know that there’s some people listening who may be finding themselves and their child in this for the first time, just by hearing you talk, who are putting some pieces together. And for all of you listening who are raising a child who falls on the spectrum, you can certainly relate to the types of behaviors and challenges, but Eileen, I would love to just have you touch on what are some of the things that are in your experience, both personally, but also working with so many families raising these children: What are some of the common, real intense behavioral or learning things that that come up?

Eileen Devine

Yeah. So when I’m working with a parent on understanding how their unique child’s brain works, we always start with what I call dysmaturity, and that’s the gap between chronological and developmental age. And the reason why I started there is because I’ve not ever worked with a family where that’s not present in one degree or another for their child, again, no matter their diagnosis. For kids with FASD, it is not an exaggeration to take their chronological age and divide it in half. Again, just to have a sense of who this child is, and how old are they, really? So you have, in my case, a 13 year old who is a very mature 7 year old and that reframe helps. It’s like “Oh, no wonder she’s acting this way. She’s not acting immaturely. She’s actually acting her age.” And so that development can be uneven in some cases with some other situations. They may act “their age” So it can get a little tricky. The goal is to not get fixed on “Oh my goodness, I have to nail down this age”, it’s to keep in mind that your child, in different areas, may be a different age. And so it’s not saying “Oh, well, they are a different age, nothing I can do about it. That’s what it is.” It’s saying, “Okay, if she is 13 going on 7, how would I approach this with a seven-year-old? How would I give more support, more understanding, more patience?” That just helps with a reframe. So that’s kind of the foundational piece that I find is always necessary.

And then we get into other cognitive skills. Some of the very common ones are slower processing, so needing more time, that’s the accommodation, giving more time. My mentor, Diane Malbin, talks about kids with FASD being 10 second kids in a 1 second world. And that is not an exaggeration. And again, it carries over to kids with autism, ADHD PANS and PANDAS. I mean, all of these other diagnoses, too, right? So giving more time, super, super common, being able to what I call “Talk the talk but can’t walk the walk.” They can sound like they can get it, they can really say, “Yeah, I know what’s going on.” And then they go do something completely different. Through a behavioral lens that looks like they’re not listening. They don’t care. They never follow my directions. What if they can talk as though they understand but they can’t integrate it into their learning? And then there’s a whole host of executive functioning skills that’s, in my experience, universal as well. Kids won’t maybe struggle with the exact same executive functioning skill, but executive functioning skills as a whole are very, very difficult. So things like not being able to stay engaged or initiate, especially non-preferred activities, right? Things like being able to transition, but transition cognitive states too, like, “I have my mind set on this. I’m so excited. Oh, something happened and our plans changed.” It’s nobody’s fault but they can’t kind of rise and fall with that disappointment. They can’t change that cognitive state like, “Oh, man, that stinks but that’s just how it is, right?” And so those kinds of cognitive skills, executive functioning is another big category of them.

Dr. Nicole Beurkens

I would say, even in that same category, something I see very commonly: Difficulty with organizing themselves in time and space, difficulty even with perception of time and time management, lack of awareness of even a lot of that stuff, which can look like, “Well, you are just intentionally not doing it”, or “You are lying about that,” when in their mind, their perception, that’s what’s true for them. So I think, yeah, those executive functions are huge.

Eileen Devine

Oh my gosh, even the confabulation is so interesting. I describe it to parents as telling a truthful lie. And I won’t go into it here, but folks, if that resonates, like “My child always lies, they can never tell me the truth.” I would encourage you to look into confabulation. It is so interesting from a brain-based perspective, and the research on it is there. And then the other piece that your comment about time made me think of, because that’s such an abstract concept, so difficult for many of our kids, no wonder they can’t manage their time. One of those very good parenting techniques is like, “You have five minutes, you have two minutes, you have one minute,” why doesn’t it work for this child? They have no concept of what five versus two versus one minutes are. But the other piece about abstract thinking is being able to be empathetic. So I have parents who say, “I don’t think my child is capable of empathy”, which is a really scary and devastating thing to think about as a parent. And so let’s talk about what cognitive skills might be involved in being empathetic. Things like understanding someone else has a different perspective, putting yourself in someone else’s shoes, being able to think of others first before yourself. Those are all cognitive skills that we expect a child to have firmly in place by a certain age. But when they’re younger, we cultivate that. We do a lot of coaching around that. When they get older, we forget that we actually coached about that. We think, “Oh, they don’t have it. Oh my goodness, they don’t have it. It’s a character flaw. It’s not a skill thing”, when absolutely it is. So this is why learning about their child’s brain is so important so that they can start to reframe all of these really challenging, distressing behaviors that they see, and then actually feel like they can do something about it to help their child be more successful.

Dr. Nicole Beurkens

Absolutely. The other piece I just want to comment on, because I see this so often, is the impulsivity piece, which is why we both commented earlier, a lot of these kids end up diagnosed as ADHD and the investigation doesn’t go any further because they tend to be physically and behaviorally and cognitively quite impulsive. And then the other piece of that is they really struggle with what we might term as “learning from experience”. In other words, parents will describe, “I feel like it is Groundhog Day every day with this kid”, where they’re doing the same thing, there’s the same consequence and it’s not sticking for them.

Eileen Devine

Yes. Oh my goodness. Yes. So I remember when I was first learning about this model to apply to my own parenting, I wasn’t doing this professionally. And again, my mentor, Diane said, “You need to just kind of let consequences go. That’s not going to work for her.” And I was like, “What? How do you parent then?” But it is about the impulsivity, absolutely. And also, about that A plus B equals this really terrible C. Oh, yeah, obvious to all of us. Why would anyone ever do that A plus B? Not obvious to these kids, right? And so understanding that for the parents who are giving consequence after consequence, not only does it just back them into this corner of like, “Nothing works, I have nothing left to do.” But it also leaves them feeling like “Oh, my goodness, there’s nothing I can do to help this child.” So that’s what we talk about a lot. It’s not about working harder. All of that energy that you are already expending, it’s learning like, okay, “That’s not going to work, and this is why, and so what do I do differently? But you also mentioned the Groundhog Day, which I hear all the time. And one of the accommodations that I talk to about parents is accepting the need to reteach, that memory and learning can be so poor, so difficult, that repetitiveness of learning. But they describe it in just that way, that it’s Groundhog Day. Yeah.

Dr. Nicole Beurkens

You and I spend hours and hours a week listening to parents talk about this. It is one of those hallmark things, particularly for kids who fall in this category. That’s why I wanted to touch on some of these, because as you talked about earlier with the statistics, potentially up to 90% of kids and families never realize or know that this is what they’re dealing with. And that’s why I really want to help people understand what we are talking about here, because whether you end up with a specific label or not doesn’t matter, but if you are finding yourself and your experience with your child and your child’s challenges in this conversation, in the things that Eileen and I are sharing, then that’s helpful to you because now we are going to get into the piece of: Okay, you have touched on, and just gave the example with consequences of why the traditional model of parenting, what we call good parenting, and what some parents have had years of experience with, with other children in their family and it worked, and then they get to a kid like this, and it’s like, “Oh, my goodness, nothing works.” Talk to us, because I want to bridge now into why this understanding of the brain is so important: In parenting stuff, we tend to take a more behavioral viewpoint of it, behavior and consequences. So let’s start to get into why that’s not real effective and how we need to be thinking differently.

Eileen Devine

Yeah, so most of the behavioral techniques that we use in parenting or teaching in the classroom or coaching, whatever it might be, rely on cognitive skills. And they rely on cognitive skills that many of these kids, even as teenagers and young adults, do not have. And so if we look at, well, what does it mean, then, to have to remember that “If I do the thing, I get a sticker at the end of the day?” That’s holding on to information, that’s inhibiting impulses, that’s all these cognitive skills that maybe this particular child doesn’t have. And so starting from the standpoint of “This child would do well if they could”, Ross Greene says that all the time, and if we can start there, then what else might be happening? So we know that behaviors and brains are always connected, the two cannot be separated, research tells us that without a doubt. And so if we can start from the assumption that this challenging behavior has something to do with lagging cognitive skills, and taking that step back to find out what exactly is that lagging skill, so that accommodations can be provided? If we have an environment where this child has been recognized as having a physical disability of the brain, accommodations have been put in place for each of their lagging skills, then the child is able to meet those expectations because they have the support there, they have what they need to be successful. And those challenging behavioral symptoms then diminish in intensity and frequency over time. That of course relies on parents then getting really, really familiar with, well, what does the brain do for us? How does this impact my child? And so for parents listening to that, it can feel like a steep learning curve at first, but I promise you that it’s worth that effort at first. And once you start to get it, it’s like, “Oh, my goodness, yes. And this, and this, and this…” Having that observation, the reflection about what you see.

Now, the second piece about the traditional behavioral techniques and why they don’t work: We can assume that a child with a brain-based difference has a very sensitive and fragile nervous system, just because of the development that’s happened. And so those traditional behavioral techniques do not take into consideration nervous system stability, they do not look at the relationship between the adult, in ideal cases a regulated adult, providing copious amounts of coregulation to that child because of how fragile their nervous system is, and that that is what needs to happen first and foremost, before any talking, intervention, anything like that, I often times use the example of my two kids being so close in age, that if my 14 year old neurotypical son, if something has happened that he and I need to talk about, I’ll say, “Hey, you need to sit down, we need to talk about this.” And even if he knows that he did something wrong, he knows he might get in trouble, he may be disappointed, frustrated, angry, he can sit down in that moment, he can tolerate having that conversation with me. He has a stable enough nervous system, and he also has the cognitive skills to do that. With my 13-year-old, it looks very different. I know that if something has happened, she’s had a challenging episode of some kind, if I said to her in that moment, “You need to sit down, we need to talk about this”, her thinking brain would be offline immediately. She cannot listen and emotionally regulate, and think about, and reflect on what I’m saying, and provide a response. All of those are cognitive skills that she struggles with on a good day. No way can she do that in a “heated” moment. So I have to provide her with coregulation, I have to give space, I have to observe and see: Is she now in a place where her nervous system is stable enough for me to now enter into this conversation and have this follow up with her. Circling back, sometimes it’s the next day that that has to happen. So again, same sort of concept: I want to address something that happened that wasn’t okay with both of my children, but it looks very different based on the way their brains work.

Dr. Nicole Beurkens

First of all, kudos to you for raising two kids 15 months apart, that’s tricky. Mine are 22-24 months apart. That’s been hard enough. But that’s a really lovely example. You are able to really see the contrast because you have got two kids who chronologically are pretty close, but developmentally there’s such a difference. And that was really just a great example of how you have to approach each of them so differently, even though from a developmental standpoint of what we would expect for that early teenager, you should be able to approach them in the same way. No, it is night and day difference. And such a lovely example.

Eileen Devine

Great, thank you. I’m glad it was helpful.

Dr. Nicole Beurkens

Okay, this understanding of “We need to be thinking about what’s going on in the brain”, sort of having the developmental age or the chronological age and recognizing, “Okay, my child is responding to and understanding things like a much younger child. I can have empathy for the fact that there’s things happening on a neurological level that are getting in the way and are causing this child to struggle.” I want you to walk through with us what that looks like, what we need to actually be doing differently. And the example you just gave is one great example of that, like “Hey, this thing happened. We need to talk about it. But whoa, here’s how I need to think about that.” Walk us through what it means on a day-to-day basis with the stuff that comes up with our kids, to be thinking about this through a brain-based lens, as opposed to strictly a behavior-based lens?

Eileen Devine

Yeah, great question. One of the reasons I only work with parents in my practice, I don’t work with kids, I don’t work with the family unit, is because so much of this shift that we are talking about relies on them doing the work. And I know how much that is to ask, but it’s also, I think, really liberating for a lot of parents to know, “Okay, it’s within me to make the biggest and most significant changes”, right? So one of the things we first work on is mindset. And what I mean by that is in the midst of a challenging moment, how do you stay regulated? That’s the first piece that we were talking about. And really, it’s not just about being like, “I need to calm down.” That’s probably not going to do it for most parents. It is really having tools in your back pocket so that you can remain regulated, so that your thinking brain stays online, and so that you can take the step back before that visceral reaction gets the best of you right in the midst of that challenging behavior, and you can think “Brain first”. That’s what we are always talking about. So some things like, “Ah, they would be doing better if they could. This is their fragile nervous system presenting itself to me”, anything that helps us stay grounded and rooted in that mindset. And then being curious about what that behavior might be telling you, which is so much harder than it sounds, but if we can remain curious, then by being curious, we want something to get bigger, we want to know more about it, right? That’s usually not the way we approach challenging behavioral symptoms. We haven’t even talked what to do, right? But those pieces are so foundational to parents being able to stay in this mindset. The other piece that I always say is that none of us are perfect, and this really is as hard as we think it is, parenting children who need this level, this intensity of support, and so beating yourself up over times that don’t go as well as you would like, like, I have parents who say, “I know what I’m supposed to do and I didn’t do it, why didn’t I do it?” Because it is as hard as you think it is. Giving yourself loads of self-compassion and grace.

Now, the other more concrete piece about what accommodations we provide, all the proactive accommodations is where we are going to see the most reduction in those challenging behavioral symptoms. So if we are in the midst of a challenging episode, that is not the time to brainstorm accommodations, right? At that point, it’s about regulation. It’s about just kind of trying to get the temperature in the room to go down. Outside of the moments, I challenge my parents to take five minutes a day, most days, not more than that, just to think about: Where did things not go well today? What could that be about? What do I know about my child’s lagging skills? How can I connect that situation to this? And to practice that over and over again, because then you start to see the patterns. And there are always patterns. I know that feels to a lot of parents like it comes out of the blue like, “Oh my gosh, it just blew up. I have no idea what happened.” But that reflection outside of the moment is where you start to see patterns like, “Oh, this was the expectation,” or this is what I asked them to do, and now I know this about the way their brain works differently. They can’t do more than one step at a time. The way I describe my daughter is, she’s a very good listener and she wants to do the right thing, but she processes slowly, and she can only do one thing at a time. So if you give her two, if you give her three, it’s going to look as though she’s not listening, right? So you start to see those kinds of patterns, like “Okay, that’s where the accommodation is needed. I know now in the morning, I can only ask them to do one thing at a time.” That reduces the tension, the friction in that interaction, and it just snowballs and builds from there. Parents start to feel more confident, they start to see more of those patterns, where the poor fit is between task and expectation and their child’s lagging skills, and that’s where the accommodations come in. So lots of brainstorming, trying it, going back to the drawing board, refining over time, making sure that you refine as your child gets older, more accommodations are needed, different accommodations. But that is the process, it is a higher overview.

Dr. Nicole Beurkens

It’s a great way to lay that out. And I think again, it just comes down to fundamentally how we approach it, whether we look at it as this is solely a problem within the child, that the kid needs to do something different, versus realizing this is a child whose brain isn’t yet able to do whatever it is that the task requires, or that we are requiring them to do, and so the responsibility is on us to figure out how to approach those things so that there is a better fit between what they need to do, what the expectation is, and what they’re capable of doing, because there’s just this huge gap all the time. What I see as these kids get older, because I treat a lot of teens and young adults, is the anger, the resentment, the aggression, the hostility, the power struggle, all of that over time, gets bigger, and bigger, and bigger because this gap just continues to widen between what they’re capable of and what they’re being expected to do. And they feel terrible about themselves because of it, and a lot of them then begin to act out of that feeling incompetent, feeling like somebody’s always mad at them, feeling like they’re a failure, feeling embarrassed, feeling scared about their own future, and yet not having a way to bridge that gap. And that’s where we as the adults in their life need to play the primary role of helping to bridge that gap.

Eileen Devine

Absolutely, yeah. And if you are a parent listening, and that resonates with you, what’s just been described, in terms of the adolescence and the behavior, know that there is still hope for you. It does not matter that your child is a teenager or a young adult. This kind of healing process, understanding where they are, providing them with more support and accommodations — There’s been this chronic, poorness of fit, so this chronic tension, it’s going to take longer to kind of have that calmed down and see the intensity and frequency of those challenging behaviors decrease, but is absolutely positive that it can happen for you. There’s no reason why that can’t be made better. And then with parents who have kids who are young adults or teenagers, and they’re just coming to this perspective now, especially in that case, where they have, say, an 18-year-old, but like we talked about before, what if it’s an 18 year old going on 10 or 11, in terms of being able to be responsible, do adult things, be independent, all of those kinds of things? We can really see this values clash happen, where there is that kind of tension, and chaos, and anger in the home. And so working with parents on understanding where their child is, where they have to meet them, and also for the parents to understand, again, this is why it is so complicated. I’m always talking to parents about these two sides of the coin: One is about their child and the way their brain works, one is about their experience, that’s the other side of the coin. Because with that, it’s like “Oh, my goodness. Okay, now I get it. I understand what my child needs. But what does that mean for me? What does that mean for their adult life, for my adult life as I thought it would be with adult children?” so there’s all of these things that come up. So just to be gentle with yourself if that’s where you are, and know that that is that too, is part of the process.

Dr. Nicole Beurkens

Yeah, and I think in that whole realm, when we understand the brain development piece in this way, it helps us to better set our expectations around the length of time we are going to be in this “in the trenches”, day to day parenting role with our kids, and being able to go through the process of grieving that, because if you have a child with this type of condition or situation, you are not going to have the same experience of them being 18 or 21, and then they’re off on their own. You are going to still be actively in the trenches, doing the day-to-day work of supporting them probably through their 20’s, and perhaps even beyond, depending on how this is impacting them. And there’s a lot of good, ultimately, I think, that can come out of parents truly understanding that, resetting their own expectations, and then allowing themselves to go through the grieving of that, and to receive whatever support they need to help them through the grieving of that, because of course, that’s a grieving process.

Eileen Devine

Yes. Oh, absolutely. The loss of what you now know may never be. That’s the way Brené Brown talks about loss, and it resonates so strongly with the parents I work with. I talk a lot with the parents that I work with about easing into the acceptance of what is, not to try to force yourself to get there quickly. I don’t think that’s possible. But to slowly ease into that acceptance of what is, and to understand that this is a marathon, not a sprint. So it’s not just, “I’m going to take this parenting course, and then I’ll be on my way,” It’s continuously deepening our understanding of who our child is. And there was a point in my life where I found that idea very exhausting. I was like, “Oh, my goodness, for the rest of my life, I will be parenting her”, I have slowly eased into the acceptance of what is. I have come to the point where it’s actually quite liberating for me to think about it, because then I don’t have to get it perfect today. There’s always opportunities to learn more, to be more curious, to deepen my understanding of who she is and what she needs, right? So again, for those parents out there where that strikes a nerve or resonates, to be gentle with yourself, loads of self-compassion.

Dr. Nicole Beurkens

Absolutely. I love the relief that comes with realizing that this is a long play, and I don’t need to get it right and know it all right now. That’s so powerful. I could talk to you about this for hours and hours. There are so many other questions I want to ask, but I want to give people just a couple of takeaways for our listeners who are saying, “Okay, I get this. This actually makes sense to me, this resonates. But how do I start?” For people for whom this is new, or maybe they sort of knew this, but they’ve kind of, with whatever’s been going on in life, have gotten off more into this responding to the behavior piece of things, and they’re like, “I want to get myself back on track.” What are a couple steps that our parents can take to just start from this brain first type of lens?

Eileen Devine

So my first suggestion would be to follow that gut instinct. And with what the rest of the world around you is telling you, that your child is bad, never listens, never behaves, ruins everything is always disruptive, to hold on to that perspective, because it is absolutely not who your tender-hearted child is, right? There’s something different going on. And then to start looking at — there’s lots of different people I can name off in terms of the neuroscience research about how brains and behaviors are connected, and what children really need in those moments, the coregulation, the connection, the accommodations, versus this behavioral approach. I know that’s not getting specific, I can give more specific resources if that’s helpful, but you could do a quick Google search and find a ton of information there too.

Dr. Nicole Beurkens

Well, and you can go back and listen to many episodes on this podcast with many guests who have talked about the neuroscience around behavior and a more brain-based understanding and coregulation. We have got so many episodes, so that’s a good start. Eileen, in your experience, both as a parent and working with parents, one tangible thing that you have them start with. Maybe it’s around their own regulation. What’s one thing that parents can start doing right now to help themselves in this?

Eileen Devine

So when I meet with a parent the first time, and we talk about this foundational understanding of this model. One of the things, again, that I talk to them about is the dysmaturity. And I encourage them to just look for that in their daily interactions with their child. So if their child is behaving in a way that aggravates them or frustrates them or triggers them in some way, gets them activated in some way, to try to take that step back and say, “What age does this remind me of? What if this is my child expressing pain and distress to me versus just trying to make my life difficult?” And sometimes they’ll say, “That’s all? That’s all you want us to do?”, and I’ll say “Go ahead and give it a try. Tell me how easy it was.” And to just practice taking that step back. Now the accommodations, if they wanted to take it a step further: Giving more time. We never give these kids the time they need to respond to our request, to turn their head when their name is called, to do the thing we have asked them to do. Assume that it’s brain, and proceed accordingly. And then less talk. Talking can be really aggravating to these kids. The verbal processing, the cognitive load that that takes. So when you feel the urge to launch into following up with your child, talking to them about what happened with verbal communication, which is the way most of us do it, to take that step back and say, “Not now. There will be a time when I can follow up with them. Not now.” And then see what happens. Start to see how that feels to you, start to see how they respond, and then go from there.

Dr. Nicole Beurkens

Oh, Eileen, so many good things here. I want to make sure that people know where they can find out more about you and your work. Is there a website or social media? Where can people find you?

Eileen Devine

Oh, thanks so much. Yeah, so I’m on Instagram. I’m on Facebook with my name. My website is just eileendevine.com. I also have a limited podcast series where I did six episodes on this brain first parenting approach, if this resonates with people, and they want to learn more, and that is at go.eileendevine.com/listennow.

Dr. Nicole Beurkens

Awesome. Love it, we will put those resources in the show notes. Thank you for all the work you are doing around this. Such an important topic, one that is really under addressed even in the realm of brain-based parenting and all of this. So I appreciate you bringing all of this information and these tools to us and spending time with us today. Thank you so much.

Eileen Devine

Oh, thanks for having me. It was really, really fun.

Dr. Nicole Beurkens

And thanks, as always, to all of you for being here and for listening. We will catch you back here next time.