The Odyssey: Parenting. Caregiving. Disability.

In Part Two of the STEM-Ability series on The Odyssey of Care, host Erin Croyle and guest Dr. John Fife (Director of the Center for Innovation in STEM Education at VCU) unpack how perceptions - and misperceptions - shape educational opportunities for students with disabilities. Drawing from both lived experiences as parents and professional expertise, Erin and Dr. Fife dive into the systemic challenges plaguing special education and STEM fields: from underfunded mandates like IDEA to deficit-based models that fixate on limitations rather than strengths. They explore why standard "inclusion" isn't enough and why creating a genuine sense of belonging, nurturing self-determination, and holding high-expectations are critical to helping neurodivergent and disabled students build their own identity and thrive. What You'll Learn: Identity Construction: Why self-advocacy and a strong sense of identity protect students against bias and othering. Belonging vs. Inclusion: Why true connection matters far more than just placing a student in a classroom. Systemic Hurdles: How underfunded mandates and under-resourced educators create systemic gaps for families. Strength-Based Support: Shifting from deficit-driven labels to talent-focused frameworks in STEM and general education.   Show Notes and Links:  Listen to STEM-Ability Episode 1: Designing a Future Where Everyone Fits Learn more about: Center for Innovation in STEM Education or CISTEME  Dr. John Fife VCU RRTC: Rehabilitation Research and Training Center   TRANSCRIPT:  01;00;13;21 - 01;00;16;18 Erin Croyle Welcome to the Odyssey of Care. 01;00;16;21 - 01;00;19;13 Erin Croyle I'm Erin Croyle, the creator and host. 01;00;19;15 - 01;00;29;23 Erin Croyle The Odyssey is the same as it ever was, just with a slightly shorter name. This podcast explores how our lives change when a loved one has a disability. 01;00;29;26 - 01;00;32;13 Erin Croyle I was lucky enough to head down this less traveled road 01;00;32;19 - 01;00;36;06 Erin Croyle when my first child was born with down syndrome in 2010. 01;00;36;09 - 01;00;39;26 Erin Croyle At the time, I was a journalist working in Southeast Asia. 01;00;39;29 - 01;00;45;28 Erin Croyle My career and life shifted dramatically after Arlo and then his two siblings entered the picture. 01;00;46;01 - 01;00;50;22 Erin Croyle Now I'm a communication specialist determined to help people with disabilities 01;00;50;25 - 01;00;51;24 Erin Croyle and their families 01;00;51;24 - 01;00;56;15 Erin Croyle get the help, support and validation they need. 01;00;56;18 - 01;01;00;16 Erin Croyle This podcast explores the triumphs and hardships we face. 01;01;00;19 - 01;01;06;09 Erin Croyle We celebrate the joys that the odyssey of parenting, caregiving, and disability bring. 01;01;06;12 - 01;01;09;04 Erin Croyle we don't shy away from the tough stuff. 01;01;09;06 - 01;01;16;11 Erin Croyle Navigating education and transitioning to adulthood is at the top of the tough list for many. 01;01;16;13 - 01;01;19;00 Erin Croyle part two of our Stem ability series, 01;01;19;07 - 01;01;23;09 Erin Croyle which is doing a deep dive into an exciting new initiative 01;01;23;12 - 01;01;27;04 Erin Croyle to improve employment outcomes for individuals with disabilities 01;01;27;07 - 01;01;28;25 Erin Croyle through evidence based training, 01;01;28;28 - 01;01;30;21 Erin Croyle emerging technologies, 01;01;30;23 - 01;01;32;27 Erin Croyle strategic employer partnerships. 01;01;33;00 - 01;01;39;21 Erin Croyle We're going to explore the role perceptions or perhaps misperceptions play in all of this. 01;01;39;24 - 01;01;42;17 Erin Croyle Joining me again is Doctor John 01;01;42;19 - 01;01;49;29 Erin Croyle associate research professor of Stem education and director of the center for innovation in Stem Education 01;01;50;06 - 01;01;58;12 Erin Croyle at Virginia Commonwealth University. 01;01;58;15 - 01;02;01;01 Erin Croyle Doctor Fife, welcome 01;02;01;04 - 01;02;03;13 John Fife Thank you so much. thank you for having me. 01;02;03;13 - 01;02;09;17 Erin Croyle For anyone who wants your full origin story, I highly recommend listening to our first episode in this series, 01;02;09;24 - 01;02;11;00 Erin Croyle which I'll link in the show notes. 01;02;11;06 - 01;02;18;01 Erin Croyle to summarize, can you give us a brief overview of what brought you here and your role with this initiative, 01;02;18;04 - 01;02;50;22 John Fife Absolutely. So as I mentioned before, I was born and raised in Trinidad and Tobago. And of course, Trinidad was impacted by colonialism and Trinidad was colonized by the French, the Spanish and then the English and gained its independence in 1962. And I think that's relevant to my story, because the story of colonialism is a story of the privileged versus the non privilege, and colonialism is perhaps the best universally understood tool of marginalization to really think about it in that way. 01;02;50;24 - 01;03;25;24 John Fife I was raised to understand how my nation was constructed and what that means for people living in various communities in that nation. So coming to the to the United States, it showed me another side of modernization, one that was focused perhaps more so on race. So I had to learn the tools to kind of protect inner being and my soul from the implications of hatred and the attempted othering that I sensed in the spaces that I entered. 01;03;25;26 - 01;04;04;05 John Fife So, for example, I was a student at a high school that was a pivotal part of the bussing era and experience just a lot of sometimes subtle, sometimes not so subtle. Bias and and prejudice had a teacher who, in class said that certain ethnic groups should not go to college, that they should really focus on labor. And yeah, you know, so you hear those things and again, you have to find a way of protecting yourself. 01;04;04;07 - 01;04;07;29 John Fife But what it also does is it also makes you very familiar, 01;04;07;29 - 01;04;38;16 John Fife with marginalization. And so when I had my kid and learned more about ADHD and kind of saw some of the way people would kind of treat him and treat us in various situations, it brought back that feeling of othering. And I began to see kind of some of the similarities in my story and in his story, even when you're very different. 01;04;38;18 - 01;04;51;13 John Fife But it helped me to understand how, as a parent, I had to help him and other kids who struggle with disabilities to kind of protect themselves and to prepare themselves for the world that they would live in. 01;04;51;13 - 01;04;54;17 Erin Croyle given your experiences both professionally and lived? 01;04;54;20 - 01;04;58;12 Erin Croyle What do you see as the biggest hurdles facing students with disabilities 01;04;58;15 - 01;05;04;23 Erin Croyle when accessing both Stem, which is science, technology, engineering and math, and a lot of times art, 01;05;04;26 - 01;05;06;22 Erin Croyle also learning in general. 01;05;06;25 - 01;05;16;05 John Fife As the fascinating question, because it's really two questions in one. It's, you know, you asked about, you know, lived and professional. 01;05;16;07 - 01;05;24;16 John Fife Hurdles. And the first thing I think about from my lived experience is. 01;05;24;18 - 01;05;45;21 John Fife The hurdle of how do I construct my identity. And I think this is a really important piece that students with disabilities need to learn, but they have to be supported in learning this. All of us have to construct our identity. All of us have to answer the question, who am I? 01;05;45;23 - 01;05;49;18 John Fife But how we do that becomes really important. 01;05;49;20 - 01;05;55;15 John Fife We need to have the supports in place to support students with disabilities in approaching an 01;05;55;17 - 01;06;16;09 John Fife and addressing that question, I think students have to be able to love and appreciate themselves so that the actions that they take are based on who they are, and not a reaction to the bias and the hatred and the lack of understanding that they experienced. 01;06;16;09 - 01;06;52;24 John Fife And that becomes really important. And I think this is one of the reasons why the grant is so important. So that's more the personal side, I think how students construct their identity becomes a major hurdle to to success. And then I think there's some other things that we know are hurdles. When we look at our system right now, we understand that we have to maintain high expectations for students with disabilities, but with high expectations, we also have to have appropriate supports. 01;06;52;27 - 01;07;16;14 John Fife So students with disabilities often perform better when adults communicate a belief in their capabilities. We know that. So we can't just have high expectations. We have to have high supports. We have to focus on strengths as well as needs. So it has to be a strength based approach. We have to recognize the talents that students have, what are their interests. 01;07;16;19 - 01;07;45;06 John Fife And it can't be based exclusively on a deficit based model, what they don't have. And oftentimes when we view students with disabilities and we see the way the system does, it's really a deficit based model. And so we have to really correct that in our approach. So many other hurdles. I think one of the most basic hurdles that I alluded to this earlier is just building strong relationships. 01;07;45;08 - 01;08;21;02 John Fife You know, the research consistently identifies positive relationships as a key factor in the success of students with disabilities. So listening to students perspectives, showing empathy and respect, and providing consistent encouragement, these are all hurdles I believe that students with disabilities face, because oftentimes the adults around them and the system that they're in may not think about that in ways that we need to. 01;08;21;07 - 01;08;56;18 John Fife We may pathologies students with disabilities instead of providing

Welcome to the debut of STEM-Ability, a brand-new series from The Odyssey of Care. In this episode, we sit down with Dr. John Fife, Director of the Center for Innovation in STEM Education at Virginia Commonwealth University, to explore a new and ambitious five-year initiative. As the workforce shifts rapidly in the age of AI, how do we ensure students with disabilities aren't just included, but empowered to thrive? Dr. Fife and host Erin Croyle discuss the intersection of innovation, vocational rehabilitation, and the vital role that lived experience plays in shaping systemic change. Whether you are a parent, educator, or student, join us as we explore how this groundbreaking project is turning evidence-based research into real-world opportunity. What you'll learn: How to prepare for the "moving target" of the future job market. The essential role of vocational rehabilitation in the modern STEM and education/workforace landscape as a whole. Why your voice matters—and how you can help shape this research in real-time. SHOW NOTES:  Learn more about: Center for Innovation in STEM Education or CISTEME  Dr. John Fife VCU RRTC: Rehabilitation Research and Training Center         TRANSCRIPT:  01;00;13;23 - 01;00;16;25 Erin Croyle Welcome to the Odyssey of Care. 01;00;16;28 - 01;00;19;10 Erin Croyle I'm Erin Croyle, the creator and host. 01;00;19;13 - 01;00;22;00 Erin Croyle The Odyssey is the same as it ever was, 01;00;22;03 - 01;00;24;18 Erin Croyle just with a slightly shorter name. 01;00;24;21 - 01;00;27;25 Erin Croyle This podcast explores how our lives change 01;00;27;28 - 01;00;30;15 Erin Croyle when a loved one has a disability. 01;00;30;18 - 01;00;36;13 Erin Croyle was lucky enough to head down this less traveled road when my first child was born with down syndrome in 2010. 01;00;36;16 - 01;00;40;14 Erin Croyle At the time, I was a journalist working in Kuala Lumpur, Malaysia. 01;00;40;17 - 01;00;46;18 Erin Croyle My career and life shifted dramatically after Arlo and his two siblings entered the picture. 01;00;46;21 - 01;00;49;00 Erin Croyle Now I'm a communication specialist 01;00;49;03 - 01;00;52;05 Erin Croyle determined to help people with disabilities and their families 01;00;52;08 - 01;00;56;03 Erin Croyle get the help, support and validation they 01;00;56;06 - 01;00;59;21 Erin Croyle This podcast explores the triumphs and hardships we face. 01;00;59;24 - 01;01;04;17 Erin Croyle We celebrate the joys that the odyssey of parenting, caregiving, and disability bring. 01;01;04;20 - 01;01;08;10 Erin Croyle we don't shy away from the tough 01;01;08;12 - 01;01;12;19 Erin Croyle Few things are more challenging than navigating through the school system 01;01;12;22 - 01;01;14;28 Erin Croyle the transition to adulthood. 01;01;15;01 - 01;01;18;29 Erin Croyle This episode is the first in our Stem ability series, 01;01;19;03 - 01;01;22;28 Erin Croyle which is doing a deep dive into an exciting new initiative 01;01;23;01 - 01;01;28;18 Erin Croyle to improve employment outcomes for people with disabilities through evidence based training, 01;01;28;20 - 01;01;30;14 Erin Croyle emerging technologies, 01;01;30;16 - 01;01;32;29 Erin Croyle strategic employer partnerships. 01;01;33;02 - 01;01;37;27 Erin Croyle This series has something for everyone students, professionals, parents, caregivers, educators. The list goes on and on. 01;01;40;15 - 01;01;44;08 Erin Croyle Joining me today to break this all down is Doctor John 01;01;44;11 - 01;01;47;17 Erin Croyle associate research professor of Stem education 01;01;47;19 - 01;01;51;12 Erin Croyle director of the center for innovation in Stem Education 01;01;51;15 - 01;01;57;12 Erin Croyle at Virginia Commonwealth University. 01;01;57;15 - 01;01;59;16 Erin Croyle Doctor Fife, welcome. 01;01;59;19 - 01;02;00;15 John Fife Thank you. 01;02;00;21 - 01;02;06;10 Unknown I'm so excited to talk to you about this initiative, but I want to start with your origin story. 01;02;06;12 - 01;02;08;01 Erin Croyle Your bio is so impressive. 01;02;08;04 - 01;02;11;21 Erin Croyle you've studied at VCU, which is of course in Richmond, Virginia, 01;02;11;23 - 01;02;22;23 Erin Croyle you've got your undergrad degrees in Boston, one of my favorite cities. Your work deals with so much intersectionality. Can you start by sharing a bit about how you landed where you are today? 01;02;22;25 - 01;02;47;29 Erin Croyle Thank you so much, Erin, and it's good to be here. Thank you for the invitation. Yeah. So currently, as you mentioned, the director of the center for innovation and Stem education, what we call systemic and the mission of our center really is to reach the missing millions by creating in the disciplinary research, outreach and training opportunities so that students can really develop their knowledge and skills to enhance the Stem workforce. 01;02;48;00 - 01;02;50;11 John Fife What we're also very interested 01;02;50;13 - 01;03;10;27 John Fife in providing professional development training to teachers, to folks who work with kids who've been marginalized so that they can receive some of the hands on skills that they they need so that they can be more innovative in the Stem space if they so desire. So that's a little bit more of my Thailand, what I do right now. 01;03;10;27 - 01;03;35;18 John Fife And I think we'll get a little bit more into students with disabilities and how we do that. But yeah, it's very interesting. I mentioned my background. I was born and raised in Trinidad and Tobago and educated at UMass Boston, where I studied psychology and African American studies in the earliest part of my career. So my work has always been centered around marginalized people. 01;03;35;23 - 01;04;04;06 John Fife And eventually I did more work on health, education, health equity before my more most current work in educational psychology as it relates to educational inequity. And so that's where the center came in. That's where me going from a historically black college or university to VCU came in and working a lot more with educational inequity. 01;04;04;09 - 01;04;10;08 Erin Croyle a that's amazing because it feels like it's the absolute perfect background for what you're doing. 01;04;10;10 - 01;04;15;13 Erin Croyle wanted to know, how much does your lived experience inform your work? 01;04;15;15 - 01;04;37;09 John Fife That's a great question. You know, I think that, like I mentioned, I also always had a proclivity to focus on people who have been disadvantaged. And in the early part of my career, that was primarily in the issue on the issue of race and ethnicity. And I started to learn more about kids with disabilities from friends that I had. 01;04;37;09 - 01;04;38;26 John Fife And then, 01;04;38;28 - 01;05;05;07 John Fife you know, eventually it all hit home when we diagnosed one of our kids with ADHD. And it was very interesting because before that period, I would try to support my friends. You know, we would have discussions about their kids, but it was always that that's that kid and that parent who are friends of mine. And when it hits home, it becomes, of course, very personal. 01;05;05;09 - 01;05;38;20 John Fife And all of a sudden it's like, wow, how are these parents actually surviving and how are they helping their kids to thrive in an environment that doesn't seem very focused on kids with disabilities? And so an area that was very intellectually based for me became an area that was very personal for me. And so I started paying a lot more attention to research on ADHD, on the needs of kids, the needs of their parents. 01;05;38;20 - 01;05;53;19 John Fife How do parents create community? So that became a real passion of mine and really began writing more grants and partnering more with researchers who were focusing on kids who have disabilities. 01;05;53;22 - 01;06;07;23 Erin Croyle It's really interesting that you say that because I have three kids and all of them have disabilities. Two of them have ADHD. One of them has down syndrome, ADHD. You know, all sorts of medical complexities, hearing loss. 01;06;07;23 - 01;06;18;29 Erin Croyle And much like you, I you know, you don't know until you know. So you you don't know until you become a parent and then you don't know until you come a parent of a kid that might have, 01;06;19;03 - 01;06;20;07 Erin Croyle dynamic needs. 01;06;20;07 - 01;06;24;11 Erin Croyle And I even remember and I think I've talked about this before on my podcast, 01;06;24;14 - 01;06;28;28 Erin Croyle because my oldest has such substantial support needs. 01;06;29;02 - 01;06;37;09 Erin Croyle I kind of missed the signs of ADHD and my other kids. And before I really understood what ADHD was and how debilitating it can be. 01;06;37;10 - 01;06;43;08 Erin Croyle I sort of thought it wasn't a big deal. And now I see like, oh, it is a big deal in a very different way. 01;06;43;08 - 01;06;49;18 Erin Croyle And some of the things are almost more complicated because those invisible disabilities make things, 01;06;49;21 - 01;07;04;12 Erin Croyle really, really hard. And, and I think that a lot of times educators see the behavior and they don't recognize that there's actually a lot of support needs behind said behavior. So, 01;07;04;16 - 01;07;08;12 Erin Croyle I say this because I'm really excited about the grant you're working on. 01;07;08;14 - 01;07;14;25 Erin Croyle a breath of fresh air. And I've read through it and I see so much opportunity for innovation when it comes to 01;07;14;27 - 01;07;18;06 Erin Croyle our children, our students, our futures and really reaching, 01;07;18;08 - 01;07;24;09 Erin Croyle those marginalized kids, those marginalized people and the intersectionality that comes with it, 01;07;24;12 - 01;07;40;20 Erin Croyle And I'm just going on and on and on. But I feel like the grant and the innovation here could really make a difference across education and the workforce. So I would like for you to share the basic cliff notes, easy to understand versi

In this special joint episode, The Odyssey: Parenting. Caregiving. Disability. teams up with Meaningful Moments to explore the vital connection between infant mental health and early intervention. Hosts Erin Croyle and Lisa Terry bring together the personal journey of parenting children with developmental delays with the systems designed to support it. This episode covers: The Power of Lived Experience: How personal journeys with disability shape the way families navigate early childhood systems. Defining Infant Mental Health: Moving beyond clinical terms to focus on the emotional connection and well-being of both the child and the caregiver. Early Intervention: Why "being present in the moment" during home visits is the cornerstone of effective developmental services.   SHOW NOTES/RESOURCES: Meaningful Moments Podcast The Odyssey Podcast Center for Family Involvement Virginia Early Intervention Professional Development Center (VEIPD) Partnership for People with Disabilties Virginia Department of Behavioral Health and Developmental Services     Meaningful Moments Podcast The Odyssey Podcast Center for Family Involvement Virginia Early Intervention Professional Development Center (VEIPD) Partnership for People with Disabilties Virginia Department of Behavioral Health and Developmental Services       TRANSCRIPT: Welcome to a special joint episode of The Odyssey: Parenting. Caregiving. Disability,  and Meaningful Moments connecting infant mental health to early intervention. Both podcasts are brought to you by the Partnership for People with Disabilities at Virginia Commonwealth University. Meaningful moments is a collaborative effort with the Virginia Department of Behavioral Health and Developmental Services, brought to you through a contract with the Partnership.   01;00;33;00 - 01;00;42;09 The Odyssey is part of my work with the Center for Family Involvement. My name is Erin Croyle. I'm a journalist who's worked for National Geographic and Al Jazeera English, both in the states and overseas. When my first child was born with Down syndrome in 2010, my life changed in so many unexpected ways, including a career shift that brought me here working with the center for Family Involvement, where staff and volunteers with lived experience provide emotional and information support to people with disabilities and their families. 01;01;05;02 - 01;01;10;19 I started the Odyssey podcast to share the struggles and triumphs that families like ours face, as well as resources, because I know all too well how different this journey is through life. When you have a loved one with a disability. 01;01;18;22 - 01;01;27;22 Thanks, Erin, I'm so excited to collaborate with you. And my name is Lisa Terry and I really bring a lot of different experience and early intervention.   01;01;27;23 - 01;01;51;18 I've been a service coordinator, a supervisor, and provide developmental services. I still do that actually still go into the homes as a developmental services provider, which I love, being there and being present in the moment with the families. I am endorsed as an infant mental health mentor and research and faculty, and I co facilitate the Division of Early Childhood and Fit Mental health, community of practice. 01;01;51;21 - 01;02;21;12 And really my professional purpose I feel like has just been unwavering. I am so passionate about just fostering that connection and nurturing the emotional well-being of all families through meaningful and collaborative support. So I'm so excited to be here with Erin today, so we can really join our podcast together and really have a great discussion around infant mental health in the center for Family Involvement.   01;02;21;14 - 01;02;24;03 And, Lisa, I want to start right off; and I gotta ask, think about mental health, I think about my own. I think about adults, I think about older kids. But what exactly is infant mental health? Yeah, and that is a great question because I feel like there's really this huge stigma around the word right, even for mental health every time we talk about it. 01;02;43;01 - 01;03;04;27 So we're talking about young children and infant mental health. Like what does that mean. And people ask us that all the time. And first and foremost, I just want to say the foundation of infant mental health is all about relationships, right? It's that connection between the caregiver and that child. It's those meaningful bonds with all relationships that we want. 01;03;04;28 - 01;03;28;09 So even if I'm going in as a provider, that relationship is still just as important because we want to make sure that they're trusting relationships that are surrounding that family. Right. And we're all born to connect. We need those supportive, those nurturing relationships to truly thrive in our environments. And for me, I guess one of the most important aspects is supporting the social emotional well-being of all families.   01;03;28;09 - 01;03;31;25 And that's how I always say it, because I feel like it's not just supporting the social emotional development of the child, but we need to really think about that emotional well-being of the family as a whole, right? And of each individual. So the caregiver, the parent, the siblings that are involved. Everyone that's involved in that family unit is equally important.   01;03;49;14 - 01;04;15;26 And parenting, as we all know, it comes with many stressors, right? And we know that stress affects the caregiver and the child, and often it's bidirectional, right. So that means if the parent is stressed, the child is going to feel stressed. Or if the child stress the parent can feel that stress. Right. And so it's really essential that we provide support for all caregivers with that focus of strengthening, strengthening that parent child relationship. 01;04;15;26 - 01;04;27;03 Because that's what's going to really foster that co regulation, that self-regulation, the secure attachment. And ultimately it's going to help children flourish in their environments. Yeah that is so critical to what happens with early intervention. And has a parent who's been through early intervention with my oldest, I was still reeling from my son Arlo's diagnosis. And there's so many stressors that you're dealing with from finances to medical components and, processing the diagnosis. I still remember, my son's,   01;04;51;13 - 01;05;02;17 the professionals that were coming in our home, right? Our I educator, Deatrice, I just have to give a shout out to because she's so. Yes, we love Deatrice, right? Like just a part of my heart. 01;05;02;17 - 01;05;20;12 And I wish I could just sit and shoot the breeze with her right now. And I remember her saying, like, Erin, you need to take a break. This is this is just the reason I'm here is to show you how to do these things naturally as part of your life. It's raising your kid and being with Arlo shouldn't feel like work.   01;05;20;15 - 01;05;27;14 But as someone who works with professional development, who's someone who does this, like how do you help show parents that what is your what are your methods? Yeah. So I mean, I feel like honestly, every family is different and you have to treat them that way. You have to look at it that way. You really need to.   01;05;40;25 - 01;06;03;13 I feel like sometimes like a little like detective, because I'm trying to figure out, like, what makes that family work. What is it that impacts families differently? Because I have five kids, right? And I could get stressed over, like, simple things because I will share and be openly honest. Like I have very like high anxiety. And so I need like routine and I need structure. 01;06;03;13 - 01;06;21;11 And when I feel like I don't have that and it's a loss, like that's really hard for me. It might not be like that for you. Right. And so we really need to figure out like, what is it that does stress those families out? What is what kind of support do they need? Some families, they might handle the diagnosis a lot easier.   01;06;21;11 - 01;06;43;03 And they kind of go into this like I need to be an advocate mode while other families, they're just not quite ready for it yet. Right. And they're it's just it's a hard thing for them to hear. My brother and my sister in law, I have a nephew. He's, four and he has autism. And they both handled it very differently. 01;06;43;03 - 01;07;06;23 And you'll see videos from our hard wired series of them sharing their story, but it's there at different points. And so not even all caregivers are the same and how they need to feel supported. But I think the most important thing is that those caregivers have that connection with you. They have those relationships with you. They know that you are going to be there to truly listen, right.   01;07;07;00 - 01;07;35;17 You're not going to just hear their story and then not provide any kind of follow up or resources or support. You're going to be really forming this trusting relationship because what they're saying to you matters. And that is something that would go so long with those relationships, because how would I expect a family to be open and vulnerable to meet with me if they don't trust me or if they don't think that I really care? 01;07;35;20 - 01;07;58;17 And so I think that's the most important thing. But really, I feel like every family is different and that's what we need to not put them in a box. We need to really dive in, dig deeper, listen to them and hear their story and their journey that they're on. Yeah. And I think too, about, you know, all the different specialists that are coming in with early intervention.   01;07;58;17 - 01;08;25;05 And when I think of, infant mental health and all of the components where you have occupational therapists, physical therapists, behaviorists, speech language pathologist, like, how do you make sure they know all the things they need to know and all those factors, you know, socio-economic, cultural, religious, you know,

When the clock strikes midnight as we ring in a new year, our problems don't magically resolve. Everything from the previous year carries over and more piles on as we get back up and running. But there's nothing wrong with setting our cynism aside to embrace a new year as a sort of clean slate. January is the perfect time to look at life from a different lens and maybe adopt a fresh perspective.  And perhaps that perspective is inside us, and 2026 is the year we start listening to ourselves and trusting our insticts.    The Odyssey: Parenting. Caregiving. Disability.  The Center for Family Involvement at VCU School of Education's Partnership for People with Disabilities provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you.        TRANSCRIPT:  01;00;13;29 - 01;00;15;20 Welcome to the Odyssey.   Parenting. Caregiving. Disability. I'm Erin Croyle, the creator and host.   The Odyssey podcast explores   how our lives change. When a loved one has a disability.   I was lucky enough to head down this less traveled road when my first child was born with Down's Syndrome in 2010.   This podcast explores the triumphs and hardships we face.   We celebrate the joys of the odyssey of parenting, caregiving, and disability bring.   But we don't shy away from the tough stuff.   Since I'm all about keeping it real, I'm going to jump right in and say 2025 was probably the hardest year of my life to date.   And it's not like the clock strikes midnight on New Year's and poof, that all goes away.   Y'all, BLEEP is still hard as BLEEP. And that's not going to change any time soon.   But the one thing that I love about the New year is it can offer a fresh perspective if you allow it too.   And that's where I'll begin.   So about that fresh perspective.   I am a perfectionist. And it makes it really hard to be the creator, host, producer, editor, all the things of a podcast it's a lot of work. And, in addition to my work at the Center for Family Involvement; in 2025, I was lucky enough to join on, at ACT for Youth at Cornell University, working there as part of the communications unit.   And I absolutely love it. And it allows me to also work with families and professionals who are dealing with special health care needs and disabilities. It is a deep, deep passion of mine. I am a journalist by trade and so production volume, production value is really important to me. And so it's very hard to do a podcast and not edit the living daylights out of it for any little errors or mistakes that I make, especially right now when I'm just kind of spit-balling.   But like I mentioned in the intro, I've had a really hard year and that came with technical difficulties and life difficulties and just difficulties, y'all. And so that fresh perspective that I'm trying to welcome into my life is just to not try to be so perfect in all aspects of it. And so maybe this podcast will be a little messier and maybe they'll be a little more.   I don't know. More pauses. See, even there I am, I have I'm having a hard time because I didn't get the grammar right. But there'll be more pauses, more ums, more whatever. When I start bringing interviews back on, when I have the bandwidth to edit them, maybe I won't edit them so much. I have a few in the can that I need to do, but   I'm used to working with a team, and I'm a one man band here, and when you're juggling all of these things in life, you just can't do it all. And you certainly can't do it all perfectly. And I recognize and talk openly about disability and neurodiversity, and my own neurodiversity is got this perfectionism trap. And man, does it really, really, really, really get in the way of getting stuff done.   I don't know, I just had a notification and   in previous iterations I would have started over and I'm not going to start over. So if that got through on the audio, so be it. If my dog barks on the audio, so be it. I'm going to roll with it.   And I got to tell you, you know, speaking about that neurodiversity piece, man, I don't know.   I want to be honest, like the ADHD thing where, some tasks are hard and having three kids with neurodiversity and differing support needs, seeing the the avoidance of non-preferred tasks, as we like to call them. I have the technical difficulties on this podcast and trying to figure those out like it's it's this thing where, I don't know, you work around the clock, but your brain cannot focus on what you need to get done.   And I, I like to I think of it as like a chainsaw, like where, you know, or to push them out or whatever, where you have to pull the, not the lever, but the string thingamabob. Right. And it's been a long time since I've done it. But like, if you can't pull it hard enough, if your arms not long enough.   I mean, talk about not being tall or not being a man or whatever. Everything designed for someone other than who you are, right? It's really hard to start up. That's my brain. When I'm trying to do technical things. It just. It just it just gets so bored with, with the minutia of, of some aspects of understanding things. I just want to know how to do it so I can do it.     I don't want to go through the process of trying to figure it out. You know, it's similar with   many, many, many things like reading a book that you don't want to read. You just it's like pulling teeth to try to get it started and think about it.   But I spend a lot of time thinking about other things. And, part of me really wishes I could have went live with the podcast on Wednesday. So that whole caregiving piece, and a whole hard talking about heart and the things in life that are hard. So not only does my oldest have multiple disabilities, you know, he has down syndrome, he has ADHD as hearing loss.   I talk about these things openly. And Arlo, that's his name. He would too. So I want to be clear that, like, I try not to overshare too many things about his life, and I get I get consent from him   And I think it's important to share things because I'm able to advocate for him in a way that a lot of people can't.   And what's interesting about Arlo and my life and my work is that it's all interwoven. So I was a journalist living overseas when he was born, and I didn't know he was going to have Down's syndrome, and I've literally had to advocate for him since before he was born. He stopped moving when I was 39 weeks pregnant, and had we not gone to the hospital because of that,   even though I say this, because or at the time I remember saying, oh, you know, just drink cold water. I remember drinking cold water. And, the night before we went into the hospital and I was at a party with my friend Tommy. Hey, Uncle TomI, if you're listening,   I miss you,   I know, we were all there and talking and and I later took a sip of really cold water, or might have even been Coca-Cola, and I, like I felt a kick, but I had felt his movement slowing and something inside me was like,   But everyone said, oh no, that slows at that time, you know, oh, it's okay. You know, babies get bigger and so their movements slow. That morning we went to the the next morning and went to the E.R. and had we not Arlo would not be here today. Right. So that advocacy started by saying, okay, it wasn't moving enough.   So I'm going to listen to my own concerns and not everybody else telling me. And sure enough, an emergency C-section totally traumatic. And out he came. And he is an ICU for two weeks and I swear this week I was we were at the doctor and his his pulse ox rate has oxygen levels dropped while he was getting this treatment, and it's like PTSD.   It took me right back to his little head in the box, you know, with oxygen and just watching the machines and looking at the beeping, wondering if I'd ever be able to bring him home. And I know for a lot of caregivers, two weeks isn't that long. But man, it feels like forever when you just want to hold your kiddo, right?   And that that advocacy has continued. So when he was like two, you know, he started, he would get pneumonia and he'd be really, really sick. And I was just sharing with my colleague this week about this, like, no one said, like, hey, he shouldn't be getting pneumonia this often. It was my advocacy when I took him to the pulmonologist and or anyone that doesn't know a pulmonologist is a doctor that, studies respiratory and lungs.   Right. Took him to the pulmonologist and I said, hey, we're doing, like, two antibiotics and steroids at a time here. I don't want to keep treating this. How do we start preventing this? And it wasn't until I said that that someone said, oh, well, we can test his IgG levels, meaning they can test his immune system to see what his body is responding to and where things are at.   I had to ask for it. I didn't even know what I was asking for. I just had to present my son in a different way and ask a question that for some reason nobody was thinking. And sure enough, we found out. I can't even remember at this point. But you know, somewhere between the ages of two and four that he has immune system deficiencies, which are quite common when you have down syndrome, because having an extra copy of the 21st chromosome messes with your immune system.   There's a direct correlation we know from mapping the human genome about that. Right. And so that advocacy led to him getting these IVIg treatments and, you know, similar advocacy led to him getting hearing aids. And, you know, similar advocacy led him to playing sports and doing this and doing that. But the medical component has always been this different sort of thing, because as I found out this week, it's.   Much more rare. To have a kiddo with special healthcare needs at the level of some of us than we even realize. And I'm sharing this because I just some I spend so much time   driving to and from appointments with

Most of us are well aware of America's mental health crisis, but lack to tools to support each others and help ourselves.  As mental health specialist and CDC Children's Mental Health Champion Patrice Beard shares, learning to spot the pink flags - those early warning signs that show up before the big red flags - can make a big difference!   he Odyssey: Parenting. Caregiving. Disability.  The Center for Family Involvement at VCU School of Education's Partnership for People with Disabilities provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you.  SHOW NOTES: 988 LIFELINE: 24/7 Support for suicide and crisis prevention. Using the 988 Lifeline is free. When you call, text, or chat the 988 lifeline, your conversation is confidential. The 988 Lifeline provides judgement-free care. Talking with someone can help save your life. Mental illness warning signs and symptoms. Understanding what depression looks like in teens. National Alliance on Mental Illness (NAMI) NAMI Virginia More about Kevin Hines, who attmepted to kill himself by jumping off the Golden Gate Bridge and is now a powerful advocate for suicde prevention.  Centers for Disease Control statistics on children's mental health REALISTIC Self Care Strategies for Caregivers How dangerous are phones and screens for teens?     TRANSCRIPT: 01:00:06:18 - 01:00:35:11 Erin Croyle Welcome to the Odyssey. Parenting. Caregiving. Disability. I'm Erin Croyle, the creator and host of the Odyssey podcast explores how our lives change when someone we love has a disability. It's something I became intimately familiar with when my first child was born with Down syndrome in 2010. Now I work with the center for Family Involvement Advocates partnership for people with disabilities.   01:00:35:13 - 01:01:05:09 Erin Croyle This podcast explores the triumphs and hardships that we face. We celebrate the joys that the odyssey of parenting, caregiving, and disability bring. But there's no sugarcoating of the tough stuff. Sure, we can do hard things. There's a whole podcast dedicated to the idea, but this caregiving life that we're living, it is next level. It's all consuming in a way that no one can understand unless they're living it too.   01:01:05:11 - 01:01:39:07 Erin Croyle We're so busy doing the hard things, thinking this is just how it is, that we don't even realize how tapped out and burnt out we are. This is why I had to have the CFI's mental health specialist and one of the CDC's children's mental health champions, Patrice Beard, on the show to talk about how we can better support everyone from those close to us, to acquaintances, to strangers, to ourselves.   01:01:39:09 - 01:01:56:03 Erin Croyle Patrice, part of what makes what we do at the center for Family Involvement so unique is that all of us have lived experience that informs our work. Can you tell us how you got started down this path to mental health awareness and education?   01:01:56:05 - 01:02:17:02 Patrice Beard Sure. I started off. I had been off work for a few years. I had originally worked for a medical home, plus, and I got familiar with Danny Yarbrough, our Dana, and, I was looking for a job, and she said, hey, the Partnership's got some admin opportunity part time. Do you want to come work for us? I was like, sure.   01:02:17:02 - 01:02:43:05 Patrice Beard So I started working for Admin Center for Family Involvement and got familiar with the center for Family Involvement. What they do, and then reaching out and helping families and that whole lived experience. I realized that there was nobody on the team. What that mental health look experience that I had. And so then we talked and I said, you know, I can help families with this.   01:02:43:05 - 01:03:11:08 Patrice Beard And she said, okay, well, you'll have to go through the navigator program. So I started talking to families and helping families through that. And then at the partnership, I was struggling. One day I came into work and I was having my daughter, who has some mental health conditions. I was just struggling with her in school and somebody said, hey, have you heard of NAMI, which is the National Alliance on Mental Illness?   01:03:11:10 - 01:03:37:15 Patrice Beard And I realized I had all these amazing programs for families. So I started taking these programs. So I took like family, a family, I took children's challenging behavior. And this was so amazing. And I was sitting in a room with other families who knew my exact experience and who I could talk with, and I could learn. It was an amazing to me that there were all these people that had the same kind of experiences that I had.   01:03:37:17 - 01:03:59:03 Patrice Beard It was just awesome. So I just started soaking it up and taking all these classes. I'm like, okay, I like classes so much now I'm going to learn how to teach them. I would take the training, the trainer classes, and through all of these processes, I was able to get better and better at understanding how to handle and how to handle the situation with mental illness and my daughter and then my family.   01:03:59:05 - 01:04:27:03 Patrice Beard And then I was using those resources to help other family members that would call in to the set up for family involvement. From there, it just kind of snowballed. Anything I could get Ahold of and learn and take and get a certification in is what I would do. With that, Dana saw that, she just allowed me to grow, and then it just kind of developed, and then she kind of said, hey, I think we need a mental health specialist on staff, and here you are.   01:04:27:04 - 01:04:49:16 Patrice Beard So I was able to join the center for Family Involvement team as a mental health specialist. So that's what I do now. And I'm still always taking webinars, and I'm always trying to learn more things so I can help families ultimately, as always, to help families. And now I'm on boards like the Department of Behavioral Health Mental Health Advisory Board.   01:04:49:18 - 01:05:01:01 Patrice Beard I'm asked to do presentations. And so it's amazing. So it's really totally just from all of the experience and having the opportunity at the partnership to evolve.   01:05:01:03 - 01:05:34:19 Erin Croyle Amazing. I'm going to mute real quick and close my door. My mom is visiting, so it's normally really quiet in my house. And she's puttering around in the background. And it's a really beautiful thing I don't get to experience and I love it, but I had to close my door. I want to explain for our listeners, you know, we talk about family navigators, and that's part of what makes the center for Family Involvement so unique, so we have staff who specialize in many things, but we also have volunteer family navigators who are trained.   01:05:34:21 - 01:06:01:06 Erin Croyle And the beauty of family navigators is that they also bring in lived experience, and we're able to connect people who reach out to us. So I'll put that information in the show notes for y'all so people can reach out to us and we find other families with lived experience similar to yours to connect to. And it's such a beautiful thing that even us as colleagues will reach out to one another.   01:06:01:07 - 01:06:21:16 Erin Croyle Just yesterday, I was struggling with something and I reached out to Nikki Brandon Berger, who is my supervisor, and I said, hey, you know, if you know anyone going through this, like, I'm really struggling, can you help me? And it's a very unique thing because when you mix disability and mental health and caregiving and aging parents and.   01:06:21:18 - 01:06:24:16 Patrice Beard All of it.   01:06:24:18 - 01:06:48:19 Erin Croyle It's a lot. And there's not a lot of help for people out there. And I know, like a lot of professionals that we see in the field, they don't have that lived experience. And that's what's so beautiful to me about the work that we do. In fact, you know, Patrice, I'm always looking for reasons to talk to you because I adore you and you just cut through the B.S. and you always tell it like it is.   01:06:48:21 - 01:07:13:06 Erin Croyle And I wanted to talk to you today because there was a moment a few months back when we were all in a staff meeting together, and there was an icebreaker question asking folks to mention their proudest accomplishments of the years. And, you know, all of us have tough times. I'm telling my kids this all the time to look out for the people around you because we put on brave faces, but we don't know what's going on behind the facade.   01:07:13:08 - 01:07:30:08 Erin Croyle And I tried to casually say something in that meeting like, I made it, or I'm still here, and you call me right after that meeting to ask how I was doing. And we hadn't talked for a while. It's not like we call each other every day or every month. It's like a couple times a year that we really talk.   01:07:30:09 - 01:07:52:13 Erin Croyle And so that phone call meant so much to me. And you said that my answer to that question raised a pink flag for you. And that was just such an intriguing concept that I've been wanting to talk to you about it on the podcast. So here we are, and I want to know, what exactly is a pink flag?   01:07:52:15 - 01:08:21:19 Patrice Beard To me, a pink flag is when you know something's off, something's different. There's a concern. It's easy for me to have a pink fly with you because I know you and I know I'm in meetings with you. I know your personality. Sometimes having a pink flag is just being really intuitive and just watching. Just observe things. So when you commented the way you commented, that's not typically how you comment.   01:08:21:21 - 01:08:44:07 Patrice Beard That's not a standard answer for Erin. I'm here is not a standard answer for Erin. I could actually hear a break in your voice when you said it, but I don't kno