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All right, folks, going to take you down to North Carolina today, we are chatting with Natalie Vecchione.
She’s a co-founder of FSD Hope and she hosts the podcast of the same name. Natalie, thank you so much for joining us here on college sports today.
Matt, thank you so much for having me. I’m glad to be here.
It is my pleasure. And so for everybody listening, FSD stands for Fetal Alcohol Spectrum Disorder. And I think for most people, right. They probably understand the fetal alcohol piece of this. But just to start us off, tell us a little bit about FSD. You know what that means, what your cause is and why this is of interest to you.
Sure thing. Well, most people know about fetal alcohol syndrome, which is one of the more severe diagnoses of FSD Fetal Alcohol Spectrum Disorder. But FSD is actually an umbrella term for the diagnoses caused by prenatal alcohol exposure.
And there are several of them that are listed. One of them is fetal alcohol syndrome. There’s also partial fetal alcohol syndrome, alcohol related birth defects, neurobehavioral disorder associated with prenatal alcohol exposure and then alcohol related neurodevelopmental disorder. That’s a mouthful. Basically, FSD Fetal Alcohol Spectrum Disorder is any diagnoses that are under this umbrella caused by prenatal alcohol exposure. And what one of our missions in FSD Hope is to not only bring awareness to foetal alcohol spectrum disorder, very misunderstood.
And FSD is actually the most common developmental disability in the Western world, Canada. In the United States, FSD affects people in different ways. Many people think that there are facial characteristics that are associated with FSD and there are with foetal alcohol syndrome. But with up to 90 percent of the cases of other FSD, there is no visible facial characteristics or no visible signs. So it’s really an invisible disability. And what another, you know, mission that we’re trying to do with FRSC Hope is to bring awareness through our podcast and through our website about not only the prevalence of FSD, but that it is often mistaken for other developmental disabilities or other brain based diagnoses.
FASTA is basically caused by alcohol at any time in a woman’s pregnancy. One of the big takeaways is that there is no safe amount of alcohol during pregnancy. This is not only just but, you know, the first community, but by the CDC. Many other organizations stand behind, you know, if either if you’re trying to get pregnant, abstain from alcohol, you know, because we know that majority of the pregnancies in the United States are unplanned.
And if we think about the percentage of people who drink that is compounded with unplanned pregnancies, then there are a lot more individuals that have enough Hassid than many people realize. And in fact, a recent study done at UNC Chapel Hill by Dr. Phillip May in twenty eighteen estimated and this is a conservative amount, that approximately one in 20 children are affected by an FSD. So it’s more prevalent than autism and a lot of other developmental disabilities.
Well, yes. So any time I see the word spectrum included in part of a diagnosis, I understand that there’s a wide range of symptoms that, you know, could be a part of that you mentioned. Right, that it could be visible, that you could see it in the face of a child. What are some of the more subtle symptoms that maybe people don’t even realize that what they are dealing with could be related to Vasti with children?
First, he has quite a few prime what we call primary characteristics, and before I go into that, there is if you’re interested in learning more about FSD, there is a book that is really just considered the go to book. It’s called Trying Differently Rather Than Harder. And it’s by Diane Malbon. And she also founded Facets FHC ETS, which is a training and education and consulting for prenatal alcohol exposure, people who are affected by foetal alcohol.
So some of the primary characteristics are things like poor impulsivity, less attention span, distractibility, easily distracted, poor, poor working memory, difficulty with memory, especially in consistency. So maybe one day somebody is able to remember something, but the next day they’re not. Things like social cues, having difficulty interpreting social cues, other characteristics.
Big one, which we kind of highlight in the community, is there’s a gap between an individual’s chronological age versus their developmental age, and that actually gets bigger or wider as an individual with an FSD gets older because there’s more expected of them and they’re not able to keep up with that executive functioning, which is a big buzzword in the developmental disability community, which essentially executive functioning skills are the skills that we use in everyday life that we kind of don’t think about, like carrying out, you know, an activity that has more than a few steps or things like time, managing money, things like that, daily living types of skills that require, you know, some predicting that kind of thing.
Those are part of executive functioning skills and those are severely impacted when you have an individual with foetal alcohol exposure. So those are just some of the examples. Medically, there are over 400 comorbid medical diagnoses that go along with having NFZ. And because it’s a spectrum, it varies from individual to individual.
Now, I want to get back to what you were saying earlier about the amount of alcohol and even the timing of when alcohol is consumed that could have that impact. I mean, I think when a lot of people hear foetal alcohol syndrome just off the bat, they think of possibly someone irresponsible drinking during their pregnancy, knowingly doing something that they shouldn’t be doing.
But based on what you’re saying, you’re you’re talking a lot about what sounds like incidental, where women who might not yet know that they’re pregnant or like you said, women who are trying to get pregnant, who could be enjoying regular drinks without, you know, a care in the world.
So how much of this happens outside of what some might consider, you know, abusive behavior? Right.
Well, in the past, people would think that, you know, NFZ was caused by either, you know, a mother being a you know, an alcoholic or like you said, you know, intentional. But really, research is finding, especially in this twenty eighteen research done by Dr Phillip May that his study was done across demographics in the United States and across different socioeconomic status, different, you know, cultural status. FASTA does not discriminate. It is more common than we think and it’s more misdiagnosed than we think.
Even if alcohol is consumed very early on during during a woman’s pregnancy, when they don’t know that consumption will affect developing unborn child. And what we found is in the first community is that, you know, so many of I say our kids, because I’m a parent of now young adult who hasn’t faced so many of our kids and individuals that have enough hasti receive. We call them the alphabet soup of acronym diagnoses, you know, things like ADHD, ASD, OCD, those kind of things, until they finally get the FSD, which is the cause of those other diagnoses.
To answer your question, it’s really it’s really so underestimated by not only, you know, society in general, but by, you know, medical professionals, because there are so many unplanned pregnancies, there are so many couples trying to have kids and, you know, they might have occasional glasses of wine here and there, and then they don’t realize they’re pregnant. So really, I mean, it’s the tip of the iceberg when it comes to when we say, you know, one in 20 or when we give estimates.
There are probably so many more individuals affected by having an FSD, and it really it can be the impact of alcohol, again, it’s a spectrum disorder, so it may impact one individual much less than it’ll impact another individual.
But what we know at the bottom, you know, at the core of it, I should say, is that foetal alcohol exposure is a brain based disability. It’s a brain based diagnosis. So it the alcohol literally changes what happens in the brain. And then as a result especially, is that individual gets older. Then you’ll see more of effects of the alcohol as they develop unless they’re born with alcohol related birth defects. And then you’ll you’ll see those in addition.
Now, you said. Right, this is a causal thing, right? So there is no undoing this. Right. It’s just a matter of being able to treat it effectively once you understand what is at the root cause.
Yes, there are interventions and what our family has done, there’s training so that you can make accommodations. But like any other brain based disability, there’s no cure. There’s a lot of research into looking at things that can help. But since it’s a brain based disability, a brain based diagnosis, essentially it’s prenatal alcohol exposure equals prenatal brain damage. So you can’t undo that. However, if diagnosed early or, you know, our son was not diagnosed until he was 15.
However, when he was diagnosed, it did open a lot of doors for us in being able to learn strategies to accommodate to him. So if you think of prenatal alcohol exposure, like in terms of traumatic brain injury, that’s really, I think, the best way to equate it in terms of, OK, well, you can’t undo that injury, you can’t undo that brain injury, but you can make accommodations. That book that I previously mentioned, trying differently rather than harder, is a great introduction to how you can make accommodations so that you’re meeting that individual more at their developmental level versus their expected chronological level.
You’ve obviously mentioned this a couple of times. I want to get to this, your personal experience, right? You’ve mentioned your son twice, but. Right. I guess this is what led you into this world. And I want to learn a little bit more about your son and then take it from there and figure out how you got started with making this your cause, not just something that you as a parent have been, you know, dealing with.
You know, like so many parent advocates, I call myself an accidental advocate.
You know, so many parents in, you know, when we advocate for, you know, whatever diagnosis or whatever, you know, cause we do it because honestly, there are not many people that are doing it, you know, and I’ve found with other parents, especially in support groups and things like that, that, you know, parents really we are our kids champions. We you know, we are the ones that make the loudest noise, to be honest with you.
So we my husband and I adopted both of our children and we adopted our son when he was two and a half weeks old. And we knew that he had medical needs, but we didn’t learn until 15 years later that they were from prenatal alcohol exposure.
As he grew, he developed more of these acronyms, sensory processing disorder, auditory processing, processing disorder, or ADHD. You know, as he grew older, he kind of the diagnoses piled up. And one doctor, when he was two, brought up the possibility of prenatal alcohol exposure. But that doctor never wrote it down. And when we asked the doctor, what should we do, he said, we’ll just put him in early intervention and he’ll be fine, which early intervention is helpful, but it’s not a cure for a developmental disability.
So as our son grew older and more characteristics became apparent, that’s when we started realizing that we needed to advocate more for this.
So one of the things that I did was my profession prior to podcasting and prior to being in this world was I’m actually a music therapist and I’ve been a board certified music therapist for over 20 years. And I didn’t even know about FSD when I was studying music therapy. So it’s ironic that, you know, I became my cause as as a parent, so.
When our son was 15, he started having a lot more secondary diagnoses, things, depression and things like that, so we finally were able to to find a specialist that recognized that, OK, yes, he has. In fact, he has you know, they gave him a foetal alcohol spectrum disorder diagnosis and along with the other diagnoses that he had and we were able to, with that diagnosis, learn more about parenting a child that has an NFL history or at the time, you know, teenager how to make accommodations, which is really important, especially if you’re thinking about, you know, FSD in terms of like prenatal brain injury.
So you make accommodations just like you would for, say, a child that has cerebral palsy or a child that has any other type of brain based diagnosis. So once we started doing that and that was over three years ago because our son is 18, once we started doing that, that really opened the door for, OK, you know what? Not enough people know about this. Not only do they not know about it, but there are for every parent like us who knows about this and who’s learning about this, there are thousands of parents who have no idea what’s happening to their kids and they’re seeing symptoms worsen.
That was a big reason.
And what’s so interesting is that we’re talking to you about FSD hope that this wasn’t your first podcast. No, no. So actually, I was volunteered for a non-profit in North Carolina, a non-profit, and calfskin formed. And I volunteered for them. And it was a wonderful experience. And I started podcasting for them in the beginning of twenty twenty when the pandemic hit and the board members, we had needed a way to communicate our mission. So I was the one who actually suggested, hey, you know, why don’t we podcast, you know?
And I researched it and I learned about it and I really actually loved it. And I love the medium of podcasting. I’m sure you do, too. It’s just great medium. It’s underutilized. And, you know, you’re in your audience members ear and you have their attention. And I love that we did that. We launch a podcast through NTFS informed and it was successful. And, you know, this summer I had some medical issues, non covid, just some kind of autoimmune issues.
And I kind of step back and I I realized that my husband and I just we both we prayed and we contemplated about this and we stepped back and we formed Feste Hope, which, you know, we our mission is more global, you know. So I had the experience of podcasting for. Yeah. For a while before we launched Vasti Hope. I still think NBFC Informed is a wonderful spot, not only a wonderful podcast, but a wonderful non-profit organization, just like the many others that are out there.
So what were some of the biggest lessons you learned about podcasting? Both when you first started doing it for FASTA Informed and then when you took the show on your own and not only launched your own show, but essentially your own brand in the space.
I think one of the reasons why we launched Fisty Hope was because not only did we want to increase awareness about this diagnosis and this disability, but we wanted to give stories of hope. Oftentimes people, when they hear about FSD, especially, you know, teenagers and adults, they hear of the you know, the secondary and the tertiary characteristics, things like jail, drugs, you know, premature death. Those are facts. And those are characteristics that people associate with Vasti.
But my husband and I wanted to share that there is hope with this diagnosis. You know, it’s a lifelong disability. Nothing changes it. However, you can have hope with, you know, having a loved one that has faced when you learn about it and when you learn about how people that have enough RSG, how their brain and how their bodies work and that how you can accommodate that. Things that I learned first of all, I learned I love podcasting.
I really do. I just I think it’s fantastic. I learned for me personally, I like to provide my guests questions. You know, I’ve had a few nervous guests that, you know, they don’t know what to do or they you know, they’re a little apprehensive about talking.
I’ve also found that having a person, whether they be a professional or a family member or a parent advocate like myself or even I’ve interviewed several individuals, adults that have enough ASD, I’ve learned it’s really important.
For people to share their story, I think that’s probably the biggest takeaway I’ve learned is that everybody has a story and it’s important. And I feel like if there are more voices behind Vasti, there will be more understanding about FSD and hopefully that’ll lead to more support for FSD. I think those are the biggest takeaways that I’ve learned as a podcast or I actually I enjoy editing. I never thought I would, but I do, which is funny. That must be like the musician and me because I just I think it’s so cool.
I do my own editing.
Um, you know, I enjoy the interaction of talking like talking to you, for example. You know, I just really enjoy that one one interaction. And it’s probably because I home school all day. So I’m you know, I of don’t have grown up interactions like as often as I’d like. So I those are just some of the things that I’ve learned as a podcast.
You’ve mentioned a couple of different organizations, FRSC, T.S., Doug was one.
Yes. Facets. Right. We talk about NCF Asadi Informed. That’s the official state of North Carolina that you originally launched a podcast through. But the charity that you told me you want to raise awareness for was Proof Alliance. And they worked to eliminate disabilities caused by, you know, fetal alcohol spectrum disorder in Minnesota specifically. Tell us a little about them and why they are so special for you.
So proof originally started as the Minnesota organization, you know, for for a Vasti, but they’ve since expanded proof is now not only it’s based in Minnesota, but it really is all over the you know, especially thanks to covid all over the country and all over the world proof to me.
I have a personal connection because our son actually participates in one of their online programs for teens and young adults with an FSD. And it’s a group it’s it’s really like a support group. And he has really benefited from it so much. I’ve also done a couple of presentations for proof. I have participated as an attendee. They have virtual conference. Well, this year was their first virtual conference. Previously it’s been in person, just like everything so proved to me.
Just I really appreciate the work that they’re doing. Again, though, I also strongly believe in NTFS and formed the other organizations that you’ve listed. But for me, proof has a personal connection because my son really benefits from the program. It’s called Baxter’s group that they have for older teens and young adults.
We will be sure to post a link to all of the organizations we mentioned with proof being the one, you know, that folks will see highlighted in the feature section and in the show notes.
But if any of this is, you know, hitting a nerve with you, striking a nerve with you, we would encourage you to check out all three organizations that we mentioned and a small donation. Right. We’ve talked about it before on the show. Even as little as a dollar can help all these organizations just show the world that there are more people supporting them than if you want to just give a lot to one, you know, maybe a little, too.
Everybody would be just as powerful, maybe if not more so, not only with all that being said.
And we can’t thank you enough for the time and sharing your story and what you’ve gone through for someone else who is battling a cause or is a parent advocate like you are thinking about getting their messaging out there, thinking about spreading the word and helping others and advocating what would be your advice to them about using podcasting as the medium of choice for their advocacy? I say go for it, I say without reservation, go for it. We know that podcasting as a medium is so untapped.
There are so many YouTube channels, there are so many blogs, there’s so many. And I’m not knocking any of them. They’re all, you know, I’m sure especially with non-profits and for causes, they’re wonderful.
But I think that there just needs to be more advocacy through podcasting. I really appreciate when you podcasts, you’re really getting somebody’s attention for however long the, you know, 20 minutes, 30 minutes or, you know, 45 to 50 minutes if it’s a long one.
I just also think that just give it a try. I really when I first started, I was nervous and, you know, I was a podcast or anything like that.
And I think that you will find your voice as you give people an opportunity to share their stories. And I think you can also grow, not use for us. In fact, you hope we’re using First Hope podcast as a basis for our website and for our resource page and for, you know, the plans that my husband and I hope to do through. You know, we consider this a mission more than anything. So I say go for it and I say connect with people like you met and connect with the great community that is out there.
There’s a lot of podcast groups, you know, on Facebook pages. There’s just so much support. Now, I really love seeing the growth of podcasting, especially during covid. Now really is the time to get a podcast out there. If you have a cause, that really means something to you.
Well, I love the idea of collaborating and working with other calls based podcast, even if they’re not on the same cause, even if they’re on the same trajectory, even if they’re not in the same universe of causes, the more we network, the more we know. And, you know, one in 20, you’re likely to run into somebody even who maybe listening to a completely different podcast who hears is like that might actually apply and, you know, could lead to new listeners and new growth for your cause.
So I think that’s a fantastic point to not just podcast in a bubble, but be sure to be out there and network and communicate with people even outside of your actual space.
Well, once again, everyone, the show is FSD Hope FSD standing for Foetal Alcohol Spectrum Disorder. If you want to learn more, it’s FSD Hope dot com. We’ll have a link to their website here on the show notes as well as a cause of thought or links to the show on Apple, Google and Spotify Link to Proof Alliance as well as NC, FSD Informed and FRSC ETF STG. Yes, it’s a lot of letters. Yes, it’s a lot of acronyms.
No you didn’t have to write it down or memorize it. I promise we’ll have links to everything to make it easy for you. Natalie Vecchione, thank you so much for taking time to share with us here on Call Sports tonight.
Matt, thank you so much for having me. I really appreciate it. Thanks for listening to this episode.
Of course, pods, if you’ve been inspired by the work of our guest, please check out the show notes of this episode in your podcasting app or at Cause Ponds dot org. There you will find links to their show, their website, their podcast, links on Apple, Google, Spotify, as well as a link to support the charity that they highlighted here on this episode. You will also find a Cause podcast Dog Beware to subscribe to this show on your favourite podcasting app, How to sign up to be a guest on this show and a link to our Facebook group, which is going to have special resources just for the folks who are podcasting for a good cause.
And I can tell you right now, we’ve got one great deal from our friends, a pod page. But you’re only going to learn about it and get that special deal if you are a member of the Facebook group for cause. And before I go, I should say thank you in particular. The show is edited and produced by Ben Kilroy of the military veteran dad’s podcast. And what a great job he has done. And all this is made possible because of the great support that I received from Shannon Rojas here at the podcast Consultive Dotcom.
Once again, if you want to learn more, go to CausePods.org. Thank you so much. And we will see you next time on calls pods.