Drinking During Pregnancy: FASD Facts and Impacts on Learning with guest Natalie Vecchione
In this episode of the Brainy Moms parenting podcast, Dr. Amy Moore and Teri Miller interview Homeschool Consultant, FASD Advocate, and author of the book, Blazing New Homeschool Trails: Educating and Launching Teens with Developmental Disabilities. In the first half of the episode, Natalie shares her story of giving up a career as an art and recreational therapist to homeschool her adopted son with Fetal Alcohol Spectrum Disorder (FASD). From this experience, she gives listeners tips on adapting the homeschool curriculum to meet the needs of neurodiverse kids–a new way of thinking about preparing kids with special needs for adulthood.
In the second half of the show, Natalie shares facts and research about FASD that may surprise even the most informed among us. Her research-backed message? No amount of alcohol is safe during pregnancy. This is a must-listen episode with a passionate and knowledgeable FASD expert.
Read the transcript and show notes for this episode:
Brainy Moms Podcast Episode 118
Drinking During Pregnancy: FASD Facts and Impacts on Learning
with guest Natalie Vecchione
Dr. Amy Moore:
Hi and welcome to this episode of Brainy Moms. I’m Dr. Amy Moore here with my beautiful co-host, Teri Miller. We’re coming to you today from a partly sunny but very hot Colorado. We are excited to welcome our guest, Natalie Vecchione. Natalie is a homeschool consultant, FASD parent advocate, co-author of the book Blazing New Homeschool Trails: Educating and Launching Teens with Developmental Disabilities. And she’s also the host of the podcast FASD Hope.
Teri Miller:
Welcome, Natalie, I’m glad that you are here with us. Thank you for joining us.
Natalie Vecchione:
Thank you so much for having me. I’m happy to be here.
Teri Miller:
Well, I am excited that you’re our guest today because we’ve got lots of homeschool mom listeners. Before we even launch into anything, just tell us a little bit about yourself, about how you got into what you do, and give us a little history for our listeners.
Natalie Vecchione:
Sure thing. So my husband and I we met in school, East Carolina University. Go Pirates. And we married pretty young right out of undergrad school. I at the time was battling severe endometriosis, and when my husband and I started dating I told him that there was a really good chance that I wouldn’t be able to conceive because of my endometriosis, and he said, “That’s okay. I love you because you’re you and not because you can carry a child. And if you can’t get pregnant, we’ll adopt.” So my husband and I then after we married, we moved to Miami where we both went to graduate school. And we tried getting pregnant for a number of years, and I actually became sicker as we were trying to conceive.
Natalie Vecchione:
So we ended graduate school, we moved up to Philadelphia, Pennsylvania in 1998. In 1999, I had a total abdominal hysterectomy at the age of 28. It was definitely a reinvention for my body because I went from being sick all the time to having surgical menopause, which is pretty dramatic, but it gave me a quality of life. And I realized I needed that, especially when we became parents a few years later.
Natalie Vecchione:
So we adopted our son when he was two and a half weeks old in 2002, and he had medical issues which we later found out were a result from his having a fetal alcohol spectrum disorder. And we tried all sorts of different schools. We tried private school, public school, hybrid school. And as he grew older and as he acquired more diagnoses, we realized that homeschooling was really the best option for him. So I stopped my career of being a music therapist and being a recreational therapist and working primarily as a music therapist at the time to homeschool our son, and that was almost eight years ago.
Natalie Vecchione:
And I didn’t realize at the time, but it was actually a fantastic accommodation. We know that homeschooling allows our kids to learn at their own pace, especially if they have a lot of strengths in one area, but maybe need more support in different areas. So we started homeschooling our son, and we also at around the same time a year later adopted our daughter, and she was our… So our daughter’s adoption story is much different than our son. Unfortunately, we don’t know anything about our son’s birth parents. We know very little about his birth mom. Nothing about his birth dad. So we have a closed adoption. We’ve tried finding out more information and just have not been successful.
Natalie Vecchione:
Our daughter on the other hand, has a completely different story. Her birth mom was actually our son’s babysitter when we lived in Philadelphia, and her birth mom and her birth aunt were my flute students as well. So we adopted our daughter at birth, my husband and I were there at her birth. And she has a very different adoption journey and a very different homeschool journey as a typically developing young child. So in 2017 when our son just before his 15th birthday, he was hospitalized as a result of having a comorbid mental health diagnosis that was actually a result of his having a fetal alcohol spectrum disorder.
Natalie Vecchione:
And I should backtrack. When he was two years old, we were verbally told by specialists that he may have been exposed to alcohol, prenatal alcohol exposure. And we had that confirmation when he was 15 and when he was hospitalized. So we really at that point when he was hospitalized, I’ll be honest, it really broke me as a mom, it really did because I just really did not know what to do. And I prayed and I educated myself and I really, I thought I was an advocate for my son, but I went to advocate boot camp and learned even more, really learned about brain-based parenting, neurobehavioral parenting, neurodiversity, and really changed the trajectory of his homeschooling to that we focused on his skills especially, but we really let him explore working with his hands and working in areas that we saw were strains for him and letting him explore.
Natalie Vecchione:
So he took some welding classes, he took some forging classes, but the class that really stuck with him and it actually turned into a camp and then turned into the subject of my portion of the book that I co-authored was he learned carpentry and became a carpentry apprentice. And that really changed our trajectory of homeschooling because I think so many homeschoolers and myself included because I did do this when I started homeschooling, we either are married to curriculums or we either are married to a strategy or we’re married to, “Okay, well, this is our group. This is our homeschool co-op. This is the way we do things.”
Natalie Vecchione:
And having a son with an FASD, with a fetal alcohol spectrum disorder I learned the hard way, unfortunately, but I learned that you really can’t be married to anything except for your spouse when you’re homeschooling, because our children’s brains and our adolescents’ brains, they develop, they change, they grow, and we need to allow for that, especially if we take a strengths-based approach to homeschooling, which is one of the many topics our book discusses.
Natalie Vecchione:
So fast forward to today, our son graduated from homeschool last year. He continues his apprenticeship even though he’s done with homeschooling, and he continues his work as a carpentry apprentice. He’s taking some more advanced courses. He’s still with his second teacher who he has been for over two years. And although all of his friends from homeschooling or that he knew through regular school have launched and they’re all either living in a dorm or in the military or are working, he is still at home. We are in the process of taking one of our detached workshops. We live on a small property, about four acres in farm country, and we’re taking one of our workshops and converting it into a tiny house for him so that he can have interdependence.
Natalie Vecchione:
And that’s another topic we really talk about in our homeschool journey, so that he can have his own space and have his own lights and things and whatnot, but yet still have that safety net of us being on the property if he needs anything, because we know with kids and adolescents and young adults that have brain-based diagnoses such as FASD, there is definitely a gap between their chronological age and their developmental age. And as parents, it’s really important for us to acknowledge that and be aware of that as they grow. Because him seeing all of his friends launch, that actually triggered some grief in him and actually in my husband and I because it was something we weren’t expecting, honestly. Sometimes you just think about getting through the day and when that happened we were like, “Oh, yeah, that is something we all need to grieve.”
Natalie Vecchione:
So again, he’s doing well, and we’re kind of gearing up for that next step. Will he ever live on his own? Perhaps with good supports in place or perhaps if we find someplace that we feel he could thrive in, but for now this is our plan. And during our homeschooling, especially the last years, we really felt that having that connection with our son so that he felt like we were his safe place and that he could come to us when he was having challenges, we thought that was really important. And I think that that’s another again, I keep saying one of the things we wanted to communicate in our book, but that was one of the many things we wanted to communicate.
Natalie Vecchione:
Our young adults, our teens, our kids, our young adults that have brain-based diagnoses such as FASD, autism spectrum, ADHD, fill in the blank, dyslexia, dyscalculia, dysgraphia, any type of brain-based diagnosis, we need to support where there’re needs such as adaptive functioning, executive functioning, areas like that. But then really highlight and shine a light on their strengths, and that can be in the area of skills, it can be in the area of arts, it can be in the area of being very sociable, personable. There are many areas where our kids that have neurodiversity shine, and that’s one of the many reasons I love homeschooling.
Natalie Vecchione:
Our daughter is typically developing. She just turned six. She does have childhood absence epilepsy which runs in her birth father’s family. So even though she is typically developing, she does have a neurological diagnosis, and homeschooling for her looks differently, but a lot of the same themes and kind of same I guess, strategies apply for her too. We support her strengths. If she has an absence seizure, then we give her that time to rest and her brain to rest and to give her that opportunity to just wait until she’s ready to start the day over or even just wait and start again tomorrow. So it’s a different journey, but a lot of the lessons that we learned with our son do apply.
Natalie Vecchione:
And our daughter loves homeschooling, she has homeschooling friends. She is very involved, she loves to sing, so she takes voice lessons. She loves art, she’s been with an art teacher for almost two years. Actually over two years now. And she loves outdoors. We have a nature path on our property so she loves going exploring and science. So it’s a whole new… It’s almost like homeschooling an only child again because there is a 13 year age gap between our children, but it’s been a great lesson for me. And I again, just wanted to share our story, our family’s story, because I know how common it is when you’re homeschooling a child that maybe is not heading down a college path after school, after homeschool. I know how isolating that can be.
Natalie Vecchione:
So with my friend and co-author Cindy LaJoy, we shared our journeys, our respective journeys and lessons we learned because we didn’t want other families and especially their parents, we didn’t want them to feel alone. This is a different path. It’s a path that’s not often taken, but as we know, those paths usually are the most beautiful and teach us the most. So that’s a very long synopsis of our journey, but that’s kind of where we are right now.
Dr. Amy Moore:
So you talk about that you actually reinvented your career because of this journey, right? You were a music therapist and recreational therapist, right?
Natalie Vecchione:
Yes.
Dr. Amy Moore:
So how did you make that transition as a woman with a career but also a mom? How did you make that transition from having a career as a therapist to then reinventing homeschooling, and then taking this to the world of homeschool moms?
Natalie Vecchione:
So, the honest answer is I’m really not sure how. If I could tell you I’m like, “Hmm, boy!” I think though, looking back… So first of all I really just, the situation at the time when we pulled our son out of school to homeschool him, I really just jumped right into homeschooling and tried to learn as much as I could. So my focus really was on our son. I really didn’t think about sharing our journey and going into advocacy and going into podcasting and going to everything that I’m doing now. Honestly, I really didn’t think about that until we went through all of the experiences we went through. Our son was hospitalized. We moved from the suburbs out to rural farm country. Our son started his apprenticeship.
Natalie Vecchione:
I learned along the way, and I think I didn’t start… I apologize. I didn’t acknowledge that, “Oh, hey, I’m learning something and I have something to share.” I think that really didn’t happen until probably a couple years ago. And what I did was I started things like I volunteered for a couple of local nonprofits related to FASD and to epilepsy. I was actually selected in our state of North Carolina, one of 50 parents to participate in a leadership summit for parents of children with special needs. It was called the Exceptional Children’s Assistance Center parent Leadership Conference, and I was very honored to be a part of that, and I’ve learned a lot in that. So I think when other people started saying, “Hey, you’re pretty good at this advocating thing. Maybe you should take it to the next level.” I think that gave me the confidence to say, “Okay, I’m ready to share our story and what we’ve learned.”
Natalie Vecchione:
So again, the honest answer, I really have no idea. But for example, podcasting, we started FASD Hope and that was over a year ago, I just felt like it was ready, I felt like inside me I knew I was ready to share our story and to learn from other people and to help others learn. And I think it was also to be honest with you, I think it was really kind of like a revelation aha moment I had about a year and a half ago where I realized that, “Okay, everything I went to school for and I studied for and I practiced for so many years over 20 years, was wonderful and I loved it and I would do it again in a heartbeat.” But I realized that I was meant to be on this road for a reason. And I think when I really embraced and acknowledged that, then doors opened even more. Then I realized that, “Oh, hey, there’s a book inside me that I need to share and teach other people.”
Natalie Vecchione:
So yeah, I think, I guess it’s just a really personal reason for everybody. For me it was okay, I knew I couldn’t do it while our son was in crises or while our son was just starting to get his sea legs in learning and whatnot. I didn’t want it felt right for me.
Teri Miller:
It sounds like it happened very naturally. You followed the natural course?
Natalie Vecchione:
Yes. It was really organic to be honest with you. I just felt like I was like, “Okay, I’m in a place now where I’m ready to.” I’ve always wanted to help others, that’s why I went into the professions I did. And but I realized now it was like, “Okay, I acknowledge that our family’s personal journey is very unique. However, from what I learned in the trainings I went to, it’s so common for so many families of kids with neurodiversity to feel so isolated and to feel so alone. And if I could be part of that solution or to change the conversation of stop focusing on the deficits and start focusing on the strengths, then I wanted to be a part of that solution.
Teri Miller:
Well, I think for other homeschooling moms, as I’m listening to you, I’m thinking about I was a homeschool mom for my oldest son had a lot of medical problems. He’s doing great now, but it was a long journey. And he was home with us for many years past what people would think is cool or good because he had medical struggles, because he was not capable of living on his own at 21, 22, 23. Well, he’s 26 now, and he is living on his own, and he’s thriving, he’s doing great, but he had his own path. It had its own timing.
Teri Miller:
And the term neurodiverse learner, I think, for other homeschool parents listening or even if you’ve got a kid, you’re just a mom that’s got kids in school, but you know that you’ve got a kid or two that may have medical problems, may have behavioral problems. There are things that we know as a mom, we know, this school environment is not working for my kiddo. And my son was in first grade, he was just starting out in first grade. Kindergarten he was able to slide through, but it was in first grade we realized, “This isn’t working. This is not helping him, he is getting worse.” And so I want to encourage listeners to check out this book, to check out resources, to know that there are options.
Teri Miller:
You don’t have to just be stuck in a public school environment. If you feel like that school is not being able to meet your child’s needs, there are options and you don’t have to feel like you’re trapped in homeschooling either. That there are options. If you’re a homeschool mom and you feel exhausted that you are burning the candle at both ends and in the middle because of the struggles going on, there are resources to help, and you can get help outside of homeschooling. So I just want to encourage listeners if you’re in this situation, there are advocates, there are people that can help you do the research, dig in. Don’t be alone in this. Just like what you’re doing, Natalie, you are reaching out to help people who feel like they’re alone. So moms, you’re not alone out there.
Dr. Amy Moore:
So I just want to say because I want Natalie’s to speak to this, if you exercise that option, that homeschool option, you don’t have to recreate the classroom in your home.
Teri Miller:
Oh, right.
Dr. Amy Moore:
And I think that that’s the whole message that you’re saying that you’ve reinvented the idea of homeschooling for children who are neurodiverse. So I’d love for you to talk about that.
Teri Miller:
Yeah.
Natalie Vecchione:
Sure. So, and I admit my mistakes in our book because… And Cindy and I both do actually. I’ve tried to recreate school at home, I remember and I even share in the book about our first day which was a big flop and I was like, “Okay, here we go.” And then I was like, “No!” So what if I could do it over again, I would definitely allow time to deschool, to decompress. If your child, especially your child that has a neurodiversity, they need that time to physically decompress. It’s almost like being in a pressure cooker or an Instapot for however many months or years. I would do that.
Natalie Vecchione:
And so for me, and this is a great example, and Terry, I’m so glad you brought this up. You as a homeschool mom or as a homeschool dad or just as a homeschool family, you do not have to do every subject yourself. I think there’s that misconception that you buy the box curriculum and you do it all yourself. Nope. My son’s a carpentry apprentice and I knew zip about carpentry when we started it, and I talk about that in this book. And when I did, and this is another key term like interdependence and the other terms we were talking about, I outsourced. I outsourced carpentry. So I did not give him his carpentry apprenticeship. Two very talented carpenters and woodworkers did, as well as camps and classes and whatnot. Same thing when he wanted to learn welding. I don’t know about welding. I mean, so we took him to a local nonprofit that they offer these small classes where you can learn the trades and everything. So that we outsourced it.
Natalie Vecchione:
And there are so many resources now, especially since the pandemic, oh my goodness, it’s like an explosion of resources especially for skills, trades, entrepreneurs, everything that we talk about in our book. You really can reinvent it and personalize it. Again, I can’t stress enough, and Cindy and I talk about this in our book in our journeys, always comply with your state or your province or your country’s guidelines, wherever you’re listening to us from, always comply with those regulations. And for us, we became members of a HSLDA because we knew that that was just a great service option organization for our family.
Dr. Amy Moore:
Can you tell our listeners what that means?
Natalie Vecchione:
Sure. So HSLDA, and we talk about it actually, I believe we even list a link in our book, is the Home School Legal Defense Association. They are an organization that not only gives family support in their homeschool journey, lets them know, “Okay, these are the regulations to abide by,” but also just lets you know if a district or a county or state is putting a little too much pressure that is actually not legally necessary. So, if you were a homeschooler and you get a letter from your school district saying, “Oh, well, you didn’t do this,” and you know that you are in compliance, HSLDA is like your insurance policy. You call them up and they will help you with that.
Natalie Vecchione:
Another thing, HSLDA also offers classes to students, they offer just so many things. The membership is totally worth the money. But finally, since especially in the past five years, I’m going to say HSLDA has really increased their Special Needs Exceptional Learners Department. So now they have staff members that can answer questions, that can give you guidance and provide resources. So that’s an added benefit, especially if you are homeschooling a child or a team that has a neurodiversity. So yeah, so that’s hslda.org, I highly recommend it as a mom with lived experience of kids with different diagnoses.
Natalie Vecchione:
Yeah. So, honestly, you can outsource the things that you don’t know or the things that you’re just not sure of. And I really did that in the last two years of our son’s homeschool journey because we really focused on his carpentry. So our math was actually based on carpentry math, and there was actually a wonderful book I found on Amazon called Shop Math. And it just basically was what he needed as a carpenter. So I bought one for his teacher, and I bought one for him and bought one for me, and we all just worked together.
Natalie Vecchione:
He also wanted to learn just about wood and the science behind wood and everything. So I mentioned in the book one of the things he did, this was actually after he graduated, but again, could be part of his apprenticeship, was he went with his apprentice teacher, his apprentice teacher had a fallen black walnut tree that was gifted to him. And if you know anything about carpentry, black walnut is just gorgeous. It’s an amazing wood to work with, especially building furniture, live edge, things like that.
Natalie Vecchione:
And again, I can’t believe I’m saying words like this. The me five years ago was like, “You’re talking about live edge, black walnut, who are you?” So I just I laugh, I just had to pause and think, “Wow, I can’t believe I’m talking like this.” But he went out with him, it was a whole day like a field trip where they went out, they got the big fallen tree, they took it to… They had it moved to the place where it was going to be cut for slabs and then where it would be dried. And it was just an amazing process our son would have never learned if he had not been in this apprenticeship experience.
Natalie Vecchione:
And again, his apprenticeship teacher, he does it out of the kindness of his heart, and that he just genuinely cares for our son. We don’t pay him, it’s just an apprenticeship based out of caring, and that he genuinely just wants to see the best for our son. So that I think is the biggest blessing of all is that… And actually, our son’s first teacher too. He was not paid or anything, he just, he did it because he wanted our son to thrive. So, yeah, that’s-
Dr. Amy Moore:
So let me ask you this, obviously, you mentioned that you have to follow your state and local guidelines for homeschooling. So talk a little bit about how moms can use a strengths-based approach. What would be the first step that they need to take? How do they implement that while following requirements?
Natalie Vecchione:
So it’s almost like how you hear in many homeschool conversations about interest-led learning, interest-led direction. So it’s where you allow your child, so if you’re parenting a child that’s on the younger side incorporating their interests into their existing so say, they’re really interested in rocks and could just mine rocks or hunt for rocks, well, then you incorporate geology into that and you have unit studies. Unit studies are awesome, I love them. You have maybe a month where you incorporate that into your curriculum.
Natalie Vecchione:
As they get older, you do things like maybe they go to a site that supervise with you, in either if you live in an area that has… I’m thinking you both are in Colorado so I’m sure you have this kind of thing like a geological site or something like that where they can go and visit for the day supervised. And then as they get older maybe they can have a mentorship or some sort of experience where they can be supervised once a week where they can work with someone or be an assistant, and then even build that up to an apprenticeship where they’re helping and it’s part of their homeschool class. So for example, our son’s apprenticeship hours, we counted them, we had monthly goals, we documented the hours, we kept a record of his work and whatnot. So it really can grow as your child grows and as your child ages.
Natalie Vecchione:
And then the other great thing about doing something like that too again, learning their interests, and it’s something they want to continue to pursue is that you can pace it at their own pace. So due to the son’s nature… Sorry, due to our son’s nature of his developmental disability, which was FASD, having a fetal alcohol spectrum disorder, his memory is very inconsistent. His working memory was affected. His ability to retrieve information was inconsistent due to the brain differences from the prenatal alcohol exposure. So one of the things we did with both of his apprenticeship teachers, one of the things I did was just talk to them about the nature of his diagnosis and say, “Okay, so the best way he learns is like breaking down steps. So maybe no more than three steps at a time, and repeating steps, and maybe having a visual cue or something.”
Natalie Vecchione:
So incorporating how they learn best into those interests too will reinforce that information. And especially, we know, I mean just as moms with lived experience, we know that when our kids are interested in something, it’s like hyper focus, it’s like all of the neurodiversity goes right into that focus. So they can play Minecraft for four hours or they could do something. So you build on that, you build on that interest. And somebody said, I was on another podcast and this was just such a beautiful statement, it’s like, “Do you want your child to have a career in something that they absolutely don’t like? Or do you want your child, teen, young adult to have a career in something that they love? And if they do, then start exploring that early.”
Natalie Vecchione:
And even before that, we always knew that our son was a very kinesthetic and visual learner. And I’ve been giving this example often because I think it’s great how it ties into what he does now. So when we were homeschooling, and we were kind of at the end of his written curriculum type of things when we do English, math, and all that stuff, our son ever since he started always liked to do his book work and his computer work or whatever at our stove standing up with the stove light on. And I tried for a long time to be like, “Oh, sit over there and everything.” He’s like, “Mom, I do it quicker, and I do it better over here.” So finally it sunk into my heart and I was like, “Okay, let’s just let it be. This is homeschooling. This is what…”
Natalie Vecchione:
So literally like maybe a year or so ago, actually I think it was before that, I went in early to see him with his carpentry teacher. And I saw him standing up at his workbench where he and his teacher do the work, standing up, writing down his stuff, and there was a light overhead. And I was like, “This is what he was meant to do. This is why he was looking. That’s what gave him that kind of feeling of, ‘Yes, confidence.'” And he works best standing up. I mean, he can measure to the 32nd of an inch in carpentry because he focuses better on his feet. And I think that’s something that parents should keep in mind.
Natalie Vecchione:
My daughter, she really likes to sit on her bouncy ball when she’s doing things. Incorporate that and learn the science behind that. And when you learn the why behind the what you think is actually a quirk, it’s actually part of their strength, so incorporate that. So, getting back to that example, I let him stand, and I would just give him breaks and he would just stand and do his work. And sure enough, when I’d go back and check it, it was as accurate as could be. So you learn a lot on this journey. And again, I just hope that our book is a resource. And Cindy shares, my co-author and friend Cindy, she shares very similar things that she learned through her now young adults of how their quirks worked into oh, hey, this is kind of like a superpower. So, yeah.
Dr. Amy Moore:
Well, and I think those are applicable to neurotypical children as well.
Natalie Vecchione:
Yes, absolutely.
Dr. Amy Moore:
I mean, my absolute favorite classrooms to see are those that offer a variety of seating arrangement, standing arrangements, because we don’t have to sit in little desks with no padding by the way, in order to learn all the same way. So absolutely, I’m glad that you shared that example.
Natalie Vecchione:
Oh, good. Yeah.
Dr. Amy Moore:
Yeah. So we need to take a quick break, and I’ll let Terry read a word from our sponsor. And then when we come back, we would like to hear about your podcast and a little bit more about FASD.
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Dr. Amy Moore:
And we are back talking to Natalie Vecchione about homeschooling neurodiverse kids. So Natalie, your podcast is called FASD Hope. Talk to us a little bit about what that’s about and what you want everybody to know about FASD.
Natalie Vecchione:
Sure thing. So FASD Hope is a podcast my husband and I started in September, excuse me, October of last year. And our mission is threefold. We want to provide awareness about fetal alcohol spectrum disorders. We want to provide resources through our podcasts, through our website, through other avenues. And then most importantly, we want to provide hope and inspiration for families, caregivers, those who work with children through adults that have a fetal alcohol spectrum disorder.
Natalie Vecchione:
So fetal alcohol spectrum disorder is a spectrum disorder similar to autism spectrum disorder or other brain-based spectrum disorders. However, the big, big takeaway from fetal alcohol spectrum disorder is that it is caused by prenatal alcohol exposure. And what we have learned in over the course of many years and especially in recent years is that alcohol is the most harmful substance for an unborn child. We often think it’s illicit drugs or even prescription drugs. It’s actually alcohol. And the science behind it is alcohol not only affects the brain, impairs and affects the brain cells, damages the brain cells and causes brain differences, but it also can cause up to 400 other medical diagnoses because we know alcohol permeates every single system in an unborn child’s body, in a person’s body.
Natalie Vecchione:
FASD is basically an umbrella term for disabilities caused by alcohol. There are five diagnoses under that umbrella: fetal alcohol syndrome, which is what most people think of which is really the most impactful where people think of, “Oh, there’s the facial qualities. There’s those facial characteristics.” With fetal alcohol syndrome, it is the most severe of the five diagnoses. However, any person that has been exposed to alcohol prenatally can look different from another one. There’s many factors that fall into play with having an FASD. So there’s fetal alcohol spectrum disorder, fetal alcohol syndrome. There is partial fetal alcohol syndrome, which is called PFAS, alcohol-related birth defects, neurobehavioral disorder associated with prenatal alcohol exposure or NDPAE, and then alcohol-related neurodevelopmental disorder.
Natalie Vecchione:
So that’s a mouthful, but basically the takeaways from this that I’d like your listeners to know about FASD are this. First of all, no amount of alcohol during pregnancy is safe. And that especially includes if whether you are married and you’re trying to get pregnant and you consume an occasional glass of wine, and then oops, you finally realize you’re pregnant six weeks later or eight weeks later. No amount of alcohol is safe during pregnancy. CDC, so many other organizations, emphasize that if you’re trying to conceive or even if you think you might be trying to conceive, just don’t drink, don’t consume alcohol.
Natalie Vecchione:
Alcohol, the facial characteristics, there’s a fallacy that people often think that, “Oh, well, in order to have alcohol exposure they have to have quote, unquote the face, the facial characteristics.” Those facial characteristics, the alcohol exposure that causes those facial characteristics, that only happens I believe it’s during day 17 through 23 in the pregnancy. So it’s very early in and it’s only for about a week in that first trimester. So if birth mom, biological mom, if a mother has consumed alcohol, either before or after, there’s not going to be any outward facial signs. So another fact is 90% of those that have an FASD have no outward facial or feature physical characteristics. So it really is an invisible disability.
Natalie Vecchione:
FASD, it’s a brain-based disorder, and it has whole body symptoms. It can also cause a range of cognitive behavioral health, adaptive functioning, executive functioning, and learning difficulties. There’s a high percentage of those that have an FASD that also have co-occurring mental health diagnoses. And again, the science behind this is because the alcohol that has affected the brain and the cognitive functioning and whatnot also has affected the mood and mood regulation and that whole stability in the brain. So there are I believe the percentage is 93% of those individuals that have an FASD also have a co-occurring mental health diagnosis.
Natalie Vecchione:
Finally, that is the biggest takeaway that I’d like people to get from… Actually, there’s two more. A recent 2018 study done by Dr. Philip May out of UNC Chapel Hill, University of North Carolina Chapel Hill, he did a study of I believe it was approximately 6,700, 6,600 first graders in four US communities that were separated. He determined through this study, and this was published in the journal… It was published in JAMA. It was also published in the American Association of Pediatrics. And I believe it was also an NIH study too.
Natalie Vecchione:
It estimated that one in 20 of those children had an FASD, and that was a very conservative estimate. It actually less conservative estimates are FASD the prevalence is somewhere between three to 10% in the US. So even if we went with that one in 20 diagnosis or that one in 20 statistic rather, that is, I think that’s more than twice as much as autism which I believe the most current statistic I’ve seen is one in 50 or one in 51. So the prevalence of FASD is much higher than people suspect.
Natalie Vecchione:
Finally, FASD is often undiagnosed. It’s actually the most undiagnosed, misdiagnosed and underdiagnosed of all the developmental disabilities because especially children with having an FASD, and this was the case with our son, often get other diagnoses first. So things like sensory processing disorder, visual processing disorder, learning difficulties, dyslexia, dyscalculia, dysgraphia, attention deficit hyperactivity disorder, even autism spectrum disorder. Those diagnoses are usually acquired by a child with an FASD. And then when treatments and interventions that usually work for those diagnoses don’t work, parents just don’t understand, they’re frustrated.
Natalie Vecchione:
Have your child tested for having an FASD, because when you learn that your child has an FASD, there’s a shift of a child won’t do something to oh, my child is not able to do something because of the brain damage. And that really was what happened to us when we learned our son had an FASD when he was 15. We were verbally, we were told by a neurologist that he had suspected it for a number of reasons, but it was finally confirmed when he was 15.
Natalie Vecchione:
The book that I would highly recommend to your listeners to learn more about FASD is Trying Differently Rather Than Harder by Diane Malbin. It’s really the book to start learning about FASD and the science behind brain-based diagnoses and making that shift from thinking that a child with a brain-based diagnosis such as FASD, thinking of it’s a willful behavior to no, it’s actually a symptom, it’s actually a brain-based symptom. And it really, we took, my husband and I took the training, we read the book, we took other trainings. And when we really started just again breaking down things to seeing things like if our son had a meltdown or if our son just was just not able to do something going back and looking at, “Okay, what is happening? Is this developmentally too high of an expectation for our son? Or is this something that it’s related to memory, he’s not able to recall it? That kind of thing.”
Natalie Vecchione:
So some examples of primary characteristics of a child adolescent, even adults that have an FASD. Some of them include impulsivity, distractibility, having a slower processing pace, and that’s visual, auditory, having that slower processing pace, having difficulty with memory, problems with working memory especially, inconsistent performance in memory. Here’s a huge one, difficulty with abstract thinking. So often, concrete thinking is really the best way an individual that has an FASD learns, because abstract thinking is just their brain is not able to process it. And related to that, having difficulty with cause and effect, so not understanding consequences.
Natalie Vecchione:
And again, when we go back to a brain-based neurobehavioral model of parenting and caregiving, what we do rather than consequences is we make accommodations and we change our expectations. So and then, probably the biggest hallmarks of FASD include dysmaturity or having a much higher chronological age than a developmental age. And then finally, having sensory either overstimulation or sensory seeking behavior. Symptoms, excuse me. So those are examples of having primary characteristics with an FASD.
Dr. Amy Moore:
Okay. So I learned so much in that conversation that I feel like maybe I should have known as a psychologist. So I really appreciate that detail, Natalie, for sure. So we are out of time and need to wrap up, and okay. There’s a pop up on my screen if you’re not watching us on YouTube and I didn’t know what to do with it. So, okay, this has been a great conversation, Natalie. We really appreciate that you took the time to share your personal journey with us and our listeners today and to educate us especially on the risks of drinking during pregnancy and how to recognize FASD symptoms and to know that we might frequently misdiagnose children. And so-
Teri Miller:
Timeframe, I was interested to hear that timeframe, 17 weeks. No, what was it?
Natalie Vecchione:
So for the facial characteristics?
Teri Miller:
Yeah, it was so interesting.
Natalie Vecchione:
I believe, so I can find this source and send it to you so you can share with your listeners, but I believe it’s day 17 through 23, days in gestation. Yeah, that’s when the facial characteristics related associated with fetal alcohol exposure happen. So if it’s after that, you’re not going to see those characteristics.
Dr. Amy Moore:
Well, and I think it’s important for our listeners then to recognize that when we think of fetal alcohol syndrome that’s what we associate, right?
Natalie Vecchione:
Right, the most dramatic FAS, yes.
Dr. Amy Moore:
Absolutely. And so just because you got lucky and didn’t drink between day 17 and 23 so you don’t have the facial characteristics, doesn’t mean that you don’t have a lifelong impact from the cognitive deficits that present and the emotional deficits that can present.
Teri Miller:
And I don’t know, I want to say, gosh, we need to recognize this and maybe set aside the shame. We didn’t know what we didn’t know.
Natalie Vecchione:
Yes, there-
Teri Miller:
[crosstalk 00:51:20] Know that there was a big movement for a while in the kind of hippie breastfeeding circles that was like, “Oh, it’s fine. You can have a glass of wine in pregnancy if it helps calm you down and lower your heart rate.” And so I think that it’s okay, moms. Listen up, we don’t need to beat ourselves up, but let’s be aware. And if your kids are struggling, it’s okay to investigate that and even get that diagnosis and not be ashamed, but say, “I didn’t know. And now we know so now let’s do the right thing and try to help.”
Dr. Amy Moore:
Well, I mean, and birth control pill babies like my youngest. I didn’t know I was pregnant because I was on birth control, and so those are not intentional when you have a glass of wine. You’re not trying to get pregnant, you think you’re preventing pregnancy, right? And so, absolutely, that awareness is important.
Natalie Vecchione:
And something important for your listeners to know is there’s actually national legislation that has been introduced. It’s called the FASD ReSPect Act. The Senate bill is 2238, and the House of Representatives bill is 4151. So S. 2238, and H.R. 4151. And basically, they’re a bunch of advocates I’ve been very blessed enough to be a part of this movement as parent advocate. There is funding for prevention, research and supports and services, and for each state to hopefully have a center for FASD where you go for resources, diagnosis. Very similar to autism and how the legislation for autism has happened.
Natalie Vecchione:
And most importantly, FASD with this bill will be recognized as a diagnosable developmental disability because it’s often misdiagnosed or you can diagnose it but it’s there’s a long wait for many of the diagnostic clinics in the US. And unfortunately, there’s just not enough resources. So this national legislation if you’re interested in about hearing more and how you can advocate for it, I will be sharing with you the link that you can go and learn more about it but yeah, it’s called the FASD ReSPect Act.
Dr. Amy Moore:
Excellent. So, Natalie, again, thank you for your time today. If you would like to connect with Natalie, learn more about FASD, get her book. Well, first of all, you can visit fasdhope.com. We’ll actually put her social media handles and the link to her book in our show notes. And again, her book is called Blazing New Homeschool Trails: Educating and Launching Teens with Developmental Disabilities, co-authored by Natalie Vecchione and Cindy LaJoy. So thank you so much for listening today. If you liked our show, we would love it if you would leave us a rating, a five star rating and a review on Apple Podcasts. If you’d rather watch us, we are on YouTube. You can follow us on social media @TheBrainyMoms, @dr_amymoore, and @terissamiller. So look, until next time, we know you’re busy moms and we’re busy moms, so we are out.
Teri Miller:
See ya!
Show Notes:
Want to connect with Natalie? Find her on social media:
Instagram – @fasdhope
Twitter – @fasdhope
Facebook – @fasdhope1
Clubhouse – @natalievecc
And at www.FASDHope.com
Link to purchase Natalie’s book, Blazing New Homeschool Trails: Educating and Launching Teens with Developmental Disabilities