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 support. Yeah. So I think there are a lot I think about partnering with families. That becomes a critical piece. Oftentimes families may feel really isolated and not included. And even in the way we do research oftentimes, I mean, sometimes research can be on this level that is so high that we're not really speaking directly to the needs of families, and we're not including families enough in what we're doing.

01;08;56;18 - 01;09;19;26 John Fife That can be a hurdle as well, where we create a gap between administrators and researchers and parents and students and their needs. So I think those are some of the areas and some of the hurdles that that students really have to face. And as adults who are supporters of those students, we have to to help them to be able to clear those rooms.

01;09;19;28 - 01;09;20;04 Erin Croyle so.

01;09;20;04 - 01;09;30;04 Erin Croyle Much of what you just said just just sparked a lot in me because it's.

01;09;30;06 - 01;09;36;29 Erin Croyle So incredibly hard navigating this as a human being. And,

01;09;37;02 - 01;10;04;28 Erin Croyle I think about my own journey and how I'm a completely different parent that I would have been had I not had my first child be born with down syndrome. And when you're talking about, you know, you mentioned deficits and we have this deficit based model where it's this dichotomy where in order to get services, we have to talk about all of the things that are quote unquote wrong with our child or, you know, the student.

01;10;05;01 - 01;10;26;28 Erin Croyle But when it comes to education and talking about our children, we should be talking about the good things. It's really complicated. And I think also, you know, such a barrier to all of this is that there's so much stigma that comes with disability. Parents don't want to categorize your kid. The labels that come with being able to get services and extra supports and even special education itself

01;10;27;04 - 01;10;35;26 Erin Croyle has such a bad rap instead of embracing such a powerful tool.

01;10;35;28 - 01;10;51;12 John Fife I think about how long it took me to even broach the issue of medication. You know, it was a real struggle for me and being in the field of psychology and thinking to myself, oh boy, what is this going to mean for my kid?

01;10;51;12 - 01;11;08;13 John Fife And it was really a struggle, and it's really difficult. And you know this when you know, you get a call and you know, it's the school and it's kind

01;11;08;15 - 01;11;13;07 John Fife Yeah. And it's it's such a struggle and it's a struggle for a parent.

01;11;13;07 - 01;11;15;01 John Fife But think about

01;11;15;03 - 01;11;23;04 Erin Croyle Right?

01;11;23;07 - 01;11;41;07 John Fife we have in our culture and and just the difficulty of living in the system that we, that we, we tend to live in. And I don't want to sound super negative. I think there are a lot of positive things that are happening, but I don't think happens if we continue to work, that only happens if we can continue to advocate.

01;11;41;08 - 01;12;08;08 John Fife That only happens if we continue to push up against the individuals who try to take us back to the olden days where, you know, if you're perfect intellectually, we can use you. And if you're not, you know, you get pushed to the side. So, yeah, you know, this, this there's so many ways that kids can thrive. But that sense of belonging, like you mentioned, it becomes the really the most important thing, you know, am I accepted?

01;12;08;08 - 01;12;22;15 John Fife Where am I accepted? Where is my place in the school system? And finding people that really understand that and the people that can advocate for me as a student, it becomes really critical.

01;12;22;17 - 01;12;23;17 Erin Croyle It does. And I think.

01;12;23;17 - 01;12;25;11 Erin Croyle I think it's important that,

01;12;25;13 - 01;12;46;11 Erin Croyle and this is why I always say in my intro to these two, to the podcast, that we don't shy away from the tough stuff. Pretending like it's all roses is never going to affect change. And so we have to point out what we're up against. And also, I hope that listeners understand that we're pointing this out so you know that you're not alone.

01;12;46;13 - 01;12;53;02 Erin Croyle You know, you and I are two professionals deeply involved in this work. And we experience,

01;12;53;05 - 01;13;05;01 Erin Croyle hurdles in our own lives. And I think that that is one of the most interesting things I've found in my journey is even the people who are coaching other parents on how to navigate this have their own struggles.

01;13;05;01 - 01;13;09;15 Erin Croyle And honestly, you know, so often on this podcast, I reflect on my own journey.

01;13;09;15 - 01;13;40;19 Erin Croyle And for this series itself, I had to reach out to a lot of other parents because there's some levels of education that just are not accessible to all students, no matter what accommodations or modifications there are. And I need to be really transparent here, because this is a really hard thing to say. And if someone would have said this ten years ago, I would have been furious because I, I don't want to put my child or any child in some category where you're saying that they can't.

01;13;40;20 - 01;13;49;04 Erin Croyle And in some ways, I do still believe that they can. We just don't know how to help them access it or we don't. You know, we're just not there yet.

01;13;49;07 - 01;13;50;03 Erin Croyle But also,

01;13;50;06 - 01;13;52;06 Erin Croyle as you were just alluding to, there's just this

01;13;52;12 - 01;13;56;22 Erin Croyle such a focus on productivity in our country where it's,

01;13;56;25 - 01;13;59;28 Erin Croyle that's the most important thing instead of just being or,

01;14;00;03 - 01;14;03;13 Erin Croyle living to your full potential or finding contentment

01;14;03;14 - 01;14;10;09 Erin Croyle at the same time, you know, there are students who are indeed capable and may be interested but don't have the right support or right tools.

01;14;10;09 - 01;14;34;09 Erin Croyle And and just recently, an educator shared this perfect analogy with me. So if you're using a hammer when what you really need is a screwdriver, it's not going to work. So tell me, how can educators, caregivers, and other adults in our children's lives tell the difference? Because more often than not, a student really is capable, and they're just not getting the support or tools they need to succeed.

01;14;34;12 - 01;14;58;16 John Fife Yeah. And you know, I one of the things that you shared a second ago really struck me. And I just think about oftentimes as a parent, and one of my struggles is having to let go

01;14;58;18 - 01;15;00;02 John Fife that they have,

01;15;00;05 - 01;15;08;03 John Fife and allowing that kid to be able to shape their own destiny.

01;15;08;05 - 01;15;44;02 John Fife So, okay, maybe you believe that your kid is great in this area and you see that, but they decide, you know what? I actually prefer this area right here. And I think that just becomes something that's really important because as parents, we are their number one support. You know, in spite of the fact that we may have other supports in school and in the community, I think that's one thing that really needs to be mentioned, being able to allow that kid to kind of create their own space for success.

01;15;44;05 - 01;15;47;28 John Fife Yeah, that I just

01;15;48;00 - 01;15;53;17 Erin Croyle Yeah.

01;15;53;20 - 01;16;06;26 John Fife how do educators and caregivers and adults, how are we able to tell the difference?

01;16;06;29 - 01;16;24;29 John Fife That is really a good question.

01;16;25;02 - 01;16;28;22 John Fife Are we?

01;16;28;24 - 01;16;39;17 John Fife Able to comply with the needs that we hear coming from those students?

01;16;39;19 - 01;16;58;09 John Fife Yeah, I don't know. Maybe maybe you can reframe the question and help me a bit because that's what I'm stuck on. I'm stuck on, you know, oftentimes seeing students being able to communicate what they need and then the experts around them

01;16;58;11 - 01;17;00;10 Erin Croyle Yeah. You know, it's funny.

01;17;00;14 - 01;17;08;21 Erin Croyle I don't know how to reframe the question because I think that's just it. I'm not sure there is an answer. You know,

01;17;08;24 - 01;17;26;12 Erin Croyle how can we help students succeed? How can we? It's this thing where self-determination is so important, but we also have to help children, students realize what they're capable of and give them the confidence and the tools.

01;17;26;12 - 01;17;29;00 Erin Croyle And I think that,

01;17;29;02 - 01;17;51;11 Erin Croyle the structures we have in place just automatically default to the kids who appear to be paying attention. And so when you have neurodivergent or disability and whatever at play, if you have an educator who sees a student doodling in, just assumes that they're not paying attention, when in fact the doodling is a tool for them to pay attention.

01;17;51;14 - 01;17;52;29 Erin Croyle You know, I think it's part of,

01;17;52;29 - 01;18;03;12 Erin Croyle we're talking about the tools. I think it's part of enlightening educators as to learning looks different for each student. Paying attention looks different for each student.

01;18;03;16 - 01;18;16;23 John Fife Yeah. And I think this is part of what we're trying to do with our grant. And the grant does a lot. But I think the teacher preparation and professional development part for the case and counselors is a critical part,

01;18;16;25 - 01;18;18;14 John Fife because so many

01;18;18;17 - 01;18;31;29 John Fife teachers feel underprepared in terms of their instruction for modifications that need to happen to instruction for students with disabilities.

01;18;32;05 - 01;18;54;11 John Fife We know that many schools lack sufficient funding to provide specialized instructional materials and assistive technologies. So, yeah, you know, I think we need more spaces like what the grant is trying to provide, where we can connect a school administrators with

01;18;54;17 - 01;19;01;16 John Fife vocational counselors, with parents, and so that parents can feel like,

01;19;01;18 - 01;19;04;14 John Fife you know, the system is really trying to support them.

01;19;04;16 - 01;19;27;25 John Fife And I've spoken to a lot of parents who who don't feel that they don't feel that way. They feel as though their kid is given kind of inappropriate educational goals. And it's kind of like, well, this is the limit that your kid has and that's it. And parents are like, well, wait a minute, my my student has more.

01;19;27;25 - 01;19;52;29 John Fife My kid is smart and these are the things that they can do. So being able to kind of communicate that message to administrators and then administrators needing the funding and the policies that can then help them stand with parents, that really becomes the big struggle. I think that's a part of, you know, the difference between the hammer and the screwdriver.

01;19;53;00 - 01;20;01;19 John Fife It's this systemic issue. And we have to really.

01;20;01;21 - 01;20;08;18 John Fife Address each level of the system. We can't ignore one or the

01;20;08;20 - 01;20;12;14 Erin Croyle That's kind of what I was going to go into next.

01;20;12;14 - 01;20;35;04 Erin Croyle know, systemic change is one of the biggest challenges. And, you know, one of the things I talk about in many aspects of my world of disability advocacy is so the individuals with Disabilities Education Act is 1975, right? It's 51 years old.

01;20;35;04 - 01;21;01;28 Erin Croyle And when that was first passed by Congress, it was supposed to fund 40%, and it has never exceeded 13%. It's hovering around there. So here we have where this this federal mandate rightfully was put in schools to make sure all students had a free and appropriate public education in a least restrictive environment, but yet has never been funded adequately.

01;21;01;28 - 01;21;35;07 Erin Croyle And then public schools are put in this role where students can and should be included, but they're not funded properly. And so one of the biggest systemic challenges I see is the just absolute flawed in and inequitable funding of public education. And then also the other one I see, and I'm curious of your thoughts, is that in higher education, these teachers are educators are not getting any training or understanding of what special education is.

01;21;35;07 - 01;22;21;13 Erin Croyle Even with a special education degree, the courses are so minimal, and special education law is so open to interpretation that I mean parents, caregivers, students, you know, it's a completely different experience from year to year, teacher to teacher, school to school, state to state, like it is just there's no rhyme or reason to how to navigate this ever.

01;22;21;16 - 01;22;25;00 John Fife Right?

01;22;25;03 - 01;22;35;20 John Fife specialists where I can tell you there's such a lack that we're always trying to find people who are trained to work within the school system.

01;22;35;20 - 01;23;01;11 John Fife However, the people who have the desire to do that, when they go into that system, they realize some of those same flaws that you mentioned. And, you know, they may decide on another career, they may decide on something that may have better pay, more sufficient supports for their career. And I think that's what we're seeing. It's almost like we're seeing, it's like a fishing net, right?

01;23;01;11 - 01;23;24;12 John Fife You can put water in it all you want, but outcomes the water in so many times we see that shortage as being part of the systemic problem. And you also mentioned again teacher preparation to support students with complex learning and behavioral needs.

01;23;24;14 - 01;23;33;24 John Fife I mean think about the difference between 13 and 40%.

01;23;33;26 - 01;23;51;24 John Fife tells us that the area that it's stuck at right there is the policy area, because those funds would make such a difference in terms of the the equity and disproportionality that we see in addressing and helping

01;23;51;27 - 01;24;10;06 Erin Croyle Yeah. And when you think about, I mean, I just think about the way that you get an IEP or a 504 and how complicated it is and the reluctance to do, you know, the amount of families I meet, who's whose child has,

01;24;10;07 - 01;24;18;18 Erin Croyle behavioral needs and they don't know what a BA, which is a functional behavioral assessment or a bit, which is a behavioral intervention plan.

01;24;18;18 - 01;24;23;04 Erin Croyle They don't even know what it is because schools don't typically want to do them

01;24;23;07 - 01;24;30;23 Erin Croyle because they cost and it's data collection. But these are things that could be put in place to support a student. And they don't know what it is because,

01;24;30;26 - 01;24;41;11 Erin Croyle I have this hard thing where I'm mad at schools, right? Because they're not doing right by the kids, but the schools have their hands tied because they don't have the funds to do what's right for the kids.

01;24;41;17 - 01;25;02;21 John Fife that's it. So it's really when it comes down to it, you know, we can't put all the blame on the schools because and I can tell you my own experience as far as school psychologists are concerned, you know, I mean there'll be a school psychologist maybe working with four different schools. Now, think about that. That means they may be at a school once or twice a week.

01;25;02;23 - 01;25;11;17 John Fife And when we think about

01;25;11;19 - 01;26;03;09 Erin Croyle Right?

01;26;03;11 - 01;26;04;04 John Fife Absolutely.

01;26;04;04 - 01;26;30;24 Erin Croyle And I'm so excited for it. And I have a lot more questions, including one that we were planning to get to today. But I think we already hit time. And what I think we should do instead is I think we're going to do an entire episode on transitions. What do you think? Because I think, yeah, because I think that in and of itself is just a 20 minute deep dive right there, because that is such a pain point.

01;26;30;24 - 01;26;52;05 Erin Croyle And I think dedicating an entire episode to that would be really useful. And I also, I mean, we I feel like we just talked about some of the systemic issues, like public school funding. I wonder as well, like that's something else that we could very much touch on.

01;26;52;08 - 01;27;10;20 John Fife different directions that we'll have to go in. We have to go right back to some of the earliest, earlier things that we talked about in terms of belonging, in terms of a struggle with discrimination and hatred and race. And there are a lot of things that we may have to

01;27;10;22 - 01;27;22;00 Erin Croyle Yeah, I want to, I want to, I guess, to wrap this episode up though, because we're kind of talking about receptions and misperceptions.

01;27;22;03 - 01;27;47;29 Erin Croyle I'm going to throw one at you and I'm trying to even just make make it make sense in my own brain. And I when I do this, I want to just say like, this is what neurodiversity is, live in action because my brain is moving around so rapidly, but I cannot spit out what I want to say. And I think it's important just to say that out loud, because I'm a 40 something adult and I'm having a hard time doing that.

01;27;47;29 - 01;28;10;24 Erin Croyle So think about students who might want to say something and are struggling in a classroom, but don't have the fully formed prefrontal cortex to be able to even communicate that they're struggling to say what they want to say. And then we have teachers that are also struggling and managing a classroom of however many students with so many needs.

01;28;10;25 - 01;28;15;04 Erin Croyle So all of that is to say,

01;28;15;06 - 01;28;20;24 Erin Croyle And this is out of left field. But when we're talking about perceptions and misperceptions, if you could just

01;28;21;01 - 01;28;32;24 Erin Croyle in the meantime, while we're figuring this out, what would you tell educators, caregivers, whatever when dealing with a student with complex behavioral needs in a classroom?

01;28;32;27 - 01;30;22;04 John Fife I think for me, it goes back to the issue of thriving, how do people I

01;30;22;06 - 01;30;33;25 John Fife And those are things that we can we can do that because that is based on

01;30;33;27 - 01;30;42;14 John Fife can create a space where people feel like they belong. We can create access and

01;30;42;17 - 01;30;53;15 Erin Croyle I love that because belonging is so much deeper than inclusion. Inclusion is just throwing someone in there and something I always stress,

01;30;53;19 - 01;30;55;29 Erin Croyle with my my son, my oldest,

01;30;55;29 - 01;31;11;07 Erin Croyle the many, many needs. And he has his expressive communication is is limited. But he's he understands. Is that connection right. Like connecting with someone even though they communicate differently.

01;31;11;09 - 01;31;17;27 Erin Croyle Genuine connection goes right hand in hand with belonging.

01;31;17;29 - 01;31;38;27 Erin Croyle Well, John, it was great connecting with you today. I am very excited for what's next in this series. And as I keep saying, anyone listening, you know, throw us our ideas because this is going to be going on and on for, I hope, a very long time and I could talk to you forever. So

01;31;39;00 - 01;31;39;15 John Fife Looking forward

01;31;39;18 - 01;31;46;15 Erin Croyle thank you.

01;31;46;17 - 01;31;48;20 Erin Croyle thank you, listeners for joining us

01;31;48;23 - 01;31;52;27 Erin Croyle for this brand new and ongoing Stem ability series.

01;31;53;00 - 01;31;58;09 Erin Croyle Please be sure to rate, review, subscribe, like, follow or whatever it is you need

01;31;58;12 - 01;32;02;25 Erin Croyle so you get a ping when the next episode drops.

01;32;02;28 - 01;32;07;23 Erin Croyle In that one, we'll be talking about best practices in supporting students with disabilities

01;32;07;23 - 01;32;11;17 Erin Croyle and what exactly vocational rehabilitation is.

01;32;11;20 - 01;32;14;03 Erin Croyle If there's a topic you want to know more about,

01;32;14;06 - 01;32;17;11 Erin Croyle just let me know.

01;32;17;14 - 01;32;20;14 Erin Croyle This is the odyssey of care.

01;32;20;17 - 01;32;21;27 Erin Croyle I'm Erin Croyle.

01;32;22;00 - 01;32;22;27 Erin Croyle We'll talk soon.

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 version of what the grant's goals are.

01;07;40;22 - 01;07;43;19 John Fife the grant was was written

01;07;43;21 - 01;08;08;29 John Fife by the Rehabilitation Research and Training Center. It was awarded to that center at VCU, and it's a five year project. And there are some very specific goals. One of the goals is vocational rehabilitation counselor participation, engagement practices, and helping and training vocational rehabilitation counselors in preparing to work with kids who have disabilities.

01;08;09;02 - 01;08;38;20 John Fife the grant also prepares those same counselors for high quality employment in the Stem disciplines, so helping vacation counselors to understand where the Stem disciplines are. When we look at AI and how that's changing careers and how it's changing the way we view things, how do kids with disabilities prepare themselves or have the supports to be prepared to live in a world that is changing this quickly?

01;08;38;21 - 01;09;09;05 John Fife I mean, when we look at kids who do not have disabilities, it's difficult for them to understand how to prepare in the post AI era. So the grant helps, really to prepare vocational rehabilitation counselors to get students ready for this new world that we live in. I want to go back to something that you mentioned. We can get back to the grant, but, you know, you talked about students with disabilities

01;09;09;08 - 01;09;38;12 John Fife one of the starkest realities to me, when you have a kid who has ADHD or autism is, you know, when that kid walks into a room, the people who don't understand that kid usually have the opinion of, oh, here comes that kid. And it's so easy to mistake behaviors of the kid for

01;09;38;14 - 01;09;41;27 John Fife with a disability and has a very separate set of needs.

01;09;42;00 - 01;09;54;17 John Fife And that's one of the things that I think, of course, vocational rehabilitation counselors are much more trained in that way, but there's still more

01;09;54;20 - 01;10;10;18 John Fife assist parents. They can assist those students so that they can actually be a liaison between the students and schools and administrators, so that they can better understand what this kid is actually dealing with and the supports that they really need.

01;10;10;19 - 01;10;34;22 John Fife So I heard that part of what you're saying, and it's really kind of so important that we focus on that. So yeah, so there are a lot of different things that the Grant really supports. Again, when we look at the labor market, we know that 39% of the skills that make up the current workforce will be absolutely obsolete in the next five years.

01;10;34;28 - 01;10;59;23 John Fife So again, we talked about Stem when we talked about AI. So we're looking really at about 170 million new jobs projected to emerge in the next five years. And it's really important for VR counselors to be able to improve their skills and understand that and understand their practices so that they can really pass this on to students who have disabilities.

01;10;59;23 - 01;11;07;03 John Fife And, you know, there are so many other statistics that really talk about where we're going and why this grant is so

01;11;07;06 - 01;11;26;18 Erin Croyle John, I'm going to put you on the spot here because, you know, I have ADHD. So you said a number and I didn't write it down. Did you say 39%? Can you repeat that?

01;11;26;21 - 01;11;31;28 John Fife actually be obsolete over the significantly different in the next five

01;11;32;00 - 01;11;37;04 Erin Croyle And do you have an example of those skills, the specific skills.

01;11;37;07 - 01;12;13;02 John Fife Yeah, and I can name one, you know, right right away. And when we look for example at computer

01;12;13;05 - 01;12;24;12 John Fife to school to study computer programing, it's like, wow, that's incredible. And for number one, you will say that person will make a lot of money for sure. And that is now totally different in a matter of a

01;12;24;15 - 01;12;27;24 John Fife the skills that's that's changing quickly.

01;12;27;26 - 01;12;41;15 John Fife So how do we deal with that world. And again these statistics are for everyone. We're not even discussing the implications, the added implications for students with disabilities. So again this is how we're

01;12;41;18 - 01;12;42;09 Erin Croyle Oh my gosh.

01;12;42;09 - 01;12;59;11 Erin Croyle Well, and I do want to say and I'm going to plug our next episode, we're going to talk about perceptions. So I don't want to I could go into that so deeply. But we'll save that for because this is part of a long series. And for our listeners out there, if there's anything that you want us to tap into, I mean, this is a five year grant.

01;12;59;13 - 01;13;17;22 Erin Croyle This is an ongoing series. There's so many things we want to touch on. And frankly, I'm excited to because to me, I knew AI was coming, but I like it felt like it happened overnight. And so the fact that so much of what this grant is doing is going to be like,

01;13;17;25 - 01;13;26;29 Erin Croyle you know, we talk about translational research and research to practice, but it's going to be on the grounds kind of following something as it evolves, sort of a moving target.

01;13;27;00 - 01;13;34;23 Erin Croyle Like, is that sorry, I'm going to totally sort of tangent really quickly, and then we'll do our last question because we're going to try to keep these short.

01;13;34;25 - 01;13;42;10 Erin Croyle As a researcher, as a as a person who does this, is that new for you to be researching a moving target like this?

01;13;42;13 - 01;14;03;00 John Fife Absolutely. It's new for everyone I don't think that it's anyone that can say that what is happening has been expected on normal. And I think the bigger question is how much of this are we really willing to embrace? And it's a difficult topic because we're talking about, especially if we're talking about AI. We're talking about the loss of jobs.

01;14;03;02 - 01;14;10;10 John Fife What is also true is we're talking about some unique opportunities

01;14;10;13 - 01;14;36;06 John Fife well-being, especially of students with disabilities. So, for example, there's a current program, Nora, where we'll be looking at that and helping vocational rehabilitation counselors to use this kind of AI powered social communication training tool, tool for individuals with autism. So, again, you know, there's always a segment of the population that says, you know, we cannot embrace this.

01;14;36;06 - 01;14;48;12 John Fife This is dangerous. And there there's a lot of that that's very valid. And we have to be concerned about what is also true is can we actually put the genie back in the box? That is part of

01;14;48;15 - 01;14;50;01 Erin Croyle No.

01;14;50;03 - 01;14;57;20 John Fife we really can't. So we have to really think about how we can ethically and carefully use this tool.

01;14;57;20 - 01;15;04;29 John Fife And for us in this project, we're thinking about how we can use this tool to really improve the lives of students with

01;15;05;01 - 01;15;07;17 Erin Croyle That is so exciting to me. And,

01;15;07;19 - 01;15;23;00 Erin Croyle like I just said, AI moving target. Everything is just changing so quickly. We've already seen the way that social media changed and we didn't really follow that as closely then. And I think now we know to follow how this is going to impact people. But

01;15;23;02 - 01;15;37;00 Erin Croyle know, what I find exciting as well is that this grant, while it's Stem focused, this research that you're doing and the support that it's going to give to students with disabilities, it applies to so many things.

01;15;37;00 - 01;16;00;03 Erin Croyle So while the series is going to be Stem ability, and we're going to talk a lot about Stem, I feel like and especially as someone who, you know, I don't share this often, but I'm a school board member, so I understand how important all the things are to inform our educators and and how higher education. There are so many changes we need to make that will hopefully help with public education.

01;16;00;11 - 01;16;07;24 Erin Croyle So I find this grant so exciting. I want to know what you're most excited about with this work.

01;16;07;26 - 01;16;53;00 John Fife a great question. And I think that the overarching thing for me is that we get an opportunity to challenge the cultural exclusivity that we're sensing in the last few years. Sometimes, at least to me, it feels like we have a modern affection for social Darwinism. You know, it's survival of the fittest, and we create our systems and sometimes our educational systems to fit folks that are already doing well and the people that are easy to understand, our system supports them adequately.

01;16;53;02 - 01;17;32;05 John Fife And I think this grant is an opportunity for us to say, wait a minute. Let's slow down. And what about the folks that we don't adequately understand and the folks that we've kind of easily left behind? What about a student who struggles with focus, and it's really incredibly smart and deserves the opportunities that every student has. And I think this grant gives us an opportunity to bring awareness, not just to vocational rehabilitation counselors who already have a certain degree of awareness, but it allows us to prepare them to partner with administrators, to partner with parents.

01;17;32;05 - 01;17;51;28 John Fife That gives parents to give parents hope. It gives students an understanding that they can attain some of the dreams that they've always had. And they don't just have to be that kid that's in the corner, that they could be integrated into the system and integrated into

01;17;52;04 - 01;17;54;24 John Fife educational discourse.

01;17;54;26 - 01;17;57;22 Erin Croyle John. Doctor Fife I am so.

01;17;57;24 - 01;18;10;24 Erin Croyle Excited to just keep talking about this with you. So we're going to stop at this because we've got more to come. And like I said before, any of you listening, please, please, please, anything you want to hear about

01;18;10;26 - 01;18;24;11 Erin Croyle you let us know and we'll tackle it, because we've got plenty of time to touch on these. And what's really cool too, since this is moving forward and we're going to be doing this while you're doing the work, is that,

01;18;24;14 - 01;18;28;15 Erin Croyle there's a chance that our listeners can inform the research even,

01;18;28;15 - 01;18;29;19 John Fife Absolutely.

01;18;29;22 - 01;18;31;07 Erin Croyle there's so much opportunity here.

01;18;31;12 - 01;18;42;17 John Fife Absolutely. And we will be in a viewing, of course, vocational counselors, we'll be interviewing parents we want to hear. We'll be interviewing students of their interested

01;18;42;19 - 01;18;43;22 Erin Croyle Yes.

01;18;43;25 - 01;18;56;28 John Fife And because those are the people who have the answers, it's actually us students. It's not the researchers, it's not the quote unquote experts. It's really our students that can really

01;18;57;00 - 01;19;00;05 Erin Croyle Yeah, yeah. It's it's it's the.

01;19;00;11 - 01;19;08;11 Erin Croyle I always say the most important members of the IEP team are the student and the and the caregiver always.

01;19;08;14 - 01;19;17;05 Erin Croyle Well until next time. Thank you.

01;19;17;08 - 01;19;24;27 Erin Croyle And thank you for joining us for this very first part of our brand new and ongoing Stem ability series.

01;19;25;00 - 01;19;35;01 Erin Croyle Please be sure to share, rate, review, subscribe, like, follow or whatever it is you need so you get a ping when the next episode drops.

01;19;35;04 - 01;19;46;13 Erin Croyle In that one, Doctor Fife and I will be discussing how perceptions and more importantly, misperceptions, impact dynamics and education and beyond.

01;19;46;16 - 01;19;49;24 Erin Croyle This is the Odyssey of Care.

01;19;49;26 - 01;19;52;12 Erin Croyle I'm Erin Croyle.

01;19;52;15 - 01;19;53;02 Erin Croyle We'll talk soon.

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, that it's the same with our education system, where you're trained to be an educator, you're trained to do some thing.

01;08;25;08 - 01;09;00;03

But when it comes to actually working with children, working with caregivers, working with families, there is so much more than you're learning in higher education that comes into play here. Absolutely. Because really, you're trying to put this knowledge into practice and not one size fits. All right. And one thing I love the most about early intervention is that no matter what, and no matter what kind of provider you are like, you're an occupational therapist, a physical therapist, speech language therapist, a service coordinator, developmental services provider.

01;09;00;03 - 01;09;23;12

We are all cross-trained, right? So that means that we are trying to look at every single aspect of child development. And that includes social emotional growth. Right? So many of the trainings that I tend to focus on is all about supporting the social emotional well-being of all families. And I can tell you that I feel like a lot of practitioners are just eager for this knowledge.

01;09;23;12 - 01;09;54;17

Right? Because like you said, like in school they go. And there isn't always the strong emphasis on social emotional development. Yet an early intervention, compassion for the families that we serve is really at the heart of what we do. And everyone working with families, they see the impact that stress can have on family dynamic. Actually, since the pandemic, I feel like that kind of like triggered this response where a lot of families were just experiencing a lot of turmoil, a lot of unknowns, a lot of stress, and more providers than ever.

01;09;54;17 - 01;10;19;09

They're a lot more eager to learn. And for anyone that's entering this field, I feel like they have to have a growth mindset and a genuine compassion, even for me, as somebody that's been in early intervention for over 15 years, I feel like I am always learning and I'm always growing, and that's something that really will go a long way when you're working in this field, because everyone can improve.

01;10;19;09 - 01;10;46;26

Nobody is perfect and what they're doing right. And every circumstance is always so different. So we are really working on teaching caregivers to work with children, and I think that just means the world. And I love that you said growth mindset, because I think about my own evolution and what I see with parents and the children and the families that you serve are dealing with such a wide range of things.

01;10;46;26 - 01;11;11;27

Right? So you have some that are going to be like my kiddo, where the diagnosis is a lifelong thing. It's something that you're seeing the families process that my kiddo is going to need support for a lifetime. And then you have other families who it might just. And I don't mean to like, make it any lower, but it might just be a speech delay or it might be a speech delay, but there are probably other things there.

01;11;11;27 - 01;11;41;11

And they're going to go on this diagnostic odyssey and I think that a lot of times, especially when you look at the history of disability and, and where we've come, you know, when I first entered this with my kiddo, with Arlo, I very much had that fixed mentality where I thought I could get all the early intervention and all the therapies, and I was going to make him the best and, you know, the most excellent kiddo with Down syndrome ever.

01;11;41;11 - 01;12;07;23

And he was going to be making speeches and do the things. And some parents have to come overcome their own ableism. There's so much stigma that comes with disability. And so how do y'all deal with that, with that fix it mentality, with the medical models that so much of this is based on, and even the idea that early intervention is meant to like, fix instead of just enhance and help kiddos reach their full potential.

01;12;07;23 - 01;12;32;24

Like, how do you take that and teach it and help families understand it? Right? And that's what I love about input mental health the most is because infant mental health truly we are just meeting families where they are, but we're focused on that connection, right. And so when I see sometimes like families where it's like they're getting stressed because they do have that fix that mentality, right.

01;12;32;24 - 01;12;55;13

And, and you can see the amount of pressure that they are putting on themselves. And we just want them to be present in, in the moment with their child. Right. And we want all of these strategies that we're teaching them to naturally, naturally be embedded in those routines and those activities so it doesn't feel like stress. But more than anything, we want them laughing and enjoying that connection with their child.

01;12;55;13 - 01;13;21;01

We want, you know, those meaningful connections of their child interacting and engaging with them. And that puts a smile on their face. Like especially a lot of the children that I work with, they do have those characteristics of autism. And so that engagement isn't always there. In the beginning. And so we find the moments, find the moments where your child is really interested in something and they're full on, like smiling and just laughing and you're having fun.

01;13;21;06 - 01;13;41;28

Those are the memories that you're creating with your child, and it's really important to remember that and not get so focused on, you know, fixing your child. Because at the end of the day, we're going to look at your child's strengths and we're going to keep pushing them to thrive. But it's really going to be around your relationship that you have with your child.

01;13;42;00 - 01;13;43;23

Yeah. And I just, it's so important to just take off the teaching hat and enjoy your kiddo and love them and see them for who they are. And I was lucky enough to have early intervention specialists that could help me see that,

01;14;00;17 - 01;14;17;17

the other beautiful thing about the early intervention model is that they do meet you, not just where you are emotionally, but physically will meet you at a playground or at a cafe or at the places that are the places your family goes to show you how to work with your kiddo in various environments.

01;14;17;19 - 01;14;39;13

I mean, how do you navigate that as someone who teaches this to professionals? Yeah, I, I love going out in the community, especially because I feel like for some children that are very sensory seeking and they like the movement, that's where you're going to get a lot more of that engagement with them too, is going to the park, right.

01;14;39;13 - 01;14;57;21

And giving them some of that input as they're going down the slide or they're swinging, and then we can work on some language around that, like especially the swing. Right? Because when they're sitting and the little baby swinging and, and so we can stop it and we can model more for them. And they're looking at their parent and they're smiling.

01;14;57;28 - 01;15;17;24

And those moments are really important. I feel like, you know, most people in early Intervention do realize how important those other routines and activities are. But I would even, like push it further because I even like walks on to the car. Right? Because those are things that happen every single day. Like you're going on a car ride, you have to take them to the car.

01;15;17;29 - 01;15;36;11

And really even working on strategies within those moments and really thinking about like, what is what's the bigger activity? But what are those little micro routines that have to happen within that routine? So whether it's you're going to the car, you have to go get your shoes, you have to go outside the door, you have to walk down a curb.

There's so many good teaching moments that are already within that larger routine and activity that they're doing. Yeah, like truly meaningful moments, like everywhere you turn. Right? Exactly. It's amazing, I think, to I mean, I want to pivot a little bit of what the center for Family Involvement does because, you know, there's only so much that y'all can do in an early or in an early intervention capacity.

01;16;06;05 - 01;16;29;15

And unless you have that lived experience, you can give emotional support. But a lot of the time, families who are impacted by some of these things need to talk with other families. And so I know when Arlo was born, I was lucky enough to find a down syndrome network and later to find the center for family Involvement and eventually work with them.

01;16;29;18 - 01;16;55;08

And so how do y'all navigate teaching your staff how to connect families with that peer to peer support? Yeah. So I'm going to actually I'm going to push it back to you first. Yeah. Answer that question. Because I do think the center for Family Involvement is so important. But explain a little bit to our audience about what the center for Family Involvement does.

01;16;55;11 - 01;17;00;19

So the enter for Family Involvement is part of the Family to Family Network. We host the Family to Family Network of Virginia, which is part of a national organization which is linked to both Parent to Parent and Family to Family, which is a part of Family Voices. And all of these organizations work on this peer to peer support model, where we have professionals training family members with that lived experience, so we can then connect people with other families who are going through similar situations, who might have similar cultural or religious or socioeconomic backgrounds, who might understand single parenting. Those differences in caregiving, those differences in your background inform everything that you do. And we recognize that talking to someone with similar lived experiences and also dealing with similar disabilities is really important. And so we train what we call family navigators to be able to support them regionally across Virginia. But also if there is sometimes there's as you all know, there's a condition so rare that we might be linking them with someone in Nebraska who has a similar, chromosomal abnormality.

And you can talk to someone who really has been through that.

01;18;15;03 - 01;18;19;11

We have genetic navigators who can help talk to families about, navigating genetics and talking about how to get certain doctors on your caseload. So it's a lot of informational support and emotional support that is really catered towards what each individual family needs based on their needs.

01;18;34;14 - 01;18;55;26

And we're really not just proud of that work, but we know how important it is because we live it. We are struggling right along with you, and it's easy to say to do things. It's very easy to say, call this person, but we're there when you make that call and it gets you nowhere, you call us back and we're like, all right, let's figure this out together.

01;18;55;26 - 01;19;23;09

And that's the sort of support that we offer. We're connecting families with peers who understand or are living it to, who have been there through every step of the life span, from prenatal to aging. And elder hood. And I love that. You know, it offers other parents, like the opportunity to connect with people that have kind of similar lived experiences, because I think that's what's most important.

01;19;23;09 - 01;19;51;00

And for us, we definitely share the information and we work together on providing a handout which will link together. We'll link to this podcast as a resource. But I will say this is the the hardest part that I have sometimes when I am working with families is getting them to make that first phone call, because I know it's such a great resource and support, but it's just it's almost like we give them the information.

01;19;51;00 - 01;19;58;25

So how would you recommend us to really get them to take that next step and to make that phone call and get connected?

01;19;58;28 - 01;20;18;21

Well, that's the hard part. It's so easy to say, make that call. But I remember very much, and this is something you and I have talked about where, you know, you're thinking about the early intervention families and the piles of paperwork that are handed to us, and it just sits in a stack on the table.

01;20;18;23 - 01;20;41;08

So, okay, encourage families to call encourage families to reach out. It is just a phone call or an email. And then, someone from our family to Family Network is back to you within like 24 to 48 hours. But we also have social media. We have a podcast. So if you're not ready to make that phone call, follow us on Instagram, follow us on Facebook.

01;20;41;08 - 01;21;02;20

You know, get a subscribe to the podcast. And so families are seeing it in their queue and when they're ready, they can reach out. Like, that's why we have these multiple forms of ways to reach people, because we recognize that the to do list, we have both physically written down and mentally is so long and that you can't keep up with it.

01;21;02;22 - 01;21;15;18

And there are things that I know personally I've been wanting to do with or for my son that I've been wanting to do for eight years now. He just turned 15, right? It's impossible to do it all in that moment. And so, you know, for staff working with families, you know, gentle reminders or, you know, give them the initial paperwork.

01;21;21;04 - 01;21;43;20

But when you're working with them, remember to remind them, because they're not going to remember those pieces of paper disappear. And so I think, like, on the sheet that we developed, there's a QR code where you can just scan it with your phone and say, hey, you know, I know I mentioned this before, but why don't you take a look again or hey, you know, you might not be ready now, but they've got some social media channels.

01;21;43;20 - 01;21;49;23

Follow them and then you'll maybe get a reminder when the time comes to say, oh wait, I could reach out to them. We're not going away. Hopefully we're never going away. We're always there and, and you might want to reach out and then you don't return a call. No one's offended. We've all been there.

01;22;01;21 - 01;22;06;03

Where you. It's not flaking. You just. Man, things hit the fan and you can't keep up. And everyone. Not only do I professionals understand it, but I think everyone at the center for Family Involvement, everyone at the partnership, we get it. This is hard. So call us when you're ready. Call us and don't call us back.

01;22;22;03 - 01;22;41;23

If we call you back and then call us a year later, it doesn't matter, but just call us. We're here. We're waiting whenever you need us. That's a phenomenal idea. And I actually haven't thought about that before. About kind of like sharing. Like maybe even, like specific episodes that you have posted that might relate to their situation to really get them, like thinking about it.

01;22;41;25 - 01;23;13;07

You know, my heart kind of like tugs a little bit back to something that happened recently where one of my families, they are no longer an early intervention because they aged out. But she called me because, as we all know, developmental piece takes a really long time to get seen. And, she had an appointment coming up, and she was just so anxious, so full of different, you know, emotions that she was feeling and just wasn't really ready to, to deal with it.

01;23;13;07 - 01;23;41;19

And I think, you know, like one of the biggest things I thought was center for Family Involvement is perfect for this. Right. And so I did give her that information because I, you know, I asked her, I was like, you know, how would you feel about getting connected to somebody that has had that lived experience before? And she was open to it, but I don't know if she ever, ever called you know, but I wonder if I would have maybe gave her some of those other resources, if that might have kind of planted the seed a little bit more for her.

01;23;41;19 - 01;23;48;27

So I'm going to I'm going to send her some of those episodes, because I think that was actually a really great suggestion, Erin. So thank you for sharing that.

01;23;49;00 - 01;23;50;28

Yeah. I mean, I think about, my own mental health and the anxiety that I feel and how hard it is to just make a call. And so sometimes, I mean, that's why we do what we do.

01;23;59;00 - 01;24;18;14

So you don't even have to make a call. Maybe there's a topic out there that can touch you or heck, you know, send an email and we'll cover a topic that you might want to hear more about. That's that's what we're here for, to just tackle these subjects that no one else is really thinking about or covering or handling.

01;24;18;14 - 01;24;47;05

And we know that because this experience is so unique and so rare and so stigmatized, that we want to break down those barriers so everyone can understand it. You know, Lisa, I think something I say so often, 1 in 4 Americans has a disability that impacts their daily life. And when you think about that, that means that you or someone you love has or will be disabled at some point in your life and talking about it openly and naturally, instead of thinking that it's a bad word is important. Let's just normalize it. It's normal. There's no normal, right? It's normal to be different.

So let's just talk about it. I agree, and I feel like I am just so appreciative of you even coming on here, because a lot of times I think people just want to hear parents perspectives too. And you are so open and vulnerable with just your experiences that you've had.

But I think that's what really, you know, resonates with families and providers because they don't always think about what is that other missing perspective that that family might have. And so thank you for doing that and sharing, you know, just your experience with us too. So I know we're coming up on the end. And I just kind of wanted to see, like, are there any last thoughts that you might have.

Oh my gosh no. Because if I start another thought, we'll go on for another 30 minutes and we will just say, right, we'll save it and do another podcast and see what else people want to hear about. I agree, and I definitely think you know anybody that is listening, check out the center for Family Involvements Resources because truly it really is a good, place to start for a lot of families and get them connected.

01;26;11;09 - 01;26;39;04

And again, talking about mental health, people want connections. Right. And so center for Family Involvement is a great way to connect caregivers to other caregivers that have experienced the same thing. So thank you, Erin, and thank you all for joining us today. And we appreciate it. Thank you.

01;26;39;06 - 01;27;04;09

And thank you for joining us on this special joint podcast of the Odyssey and Meaningful Moments. Please be sure to share reviews, subscribe, like, follow or whatever it is you need to do to get a ping when our next episodes drop, and let us know what topics you might want us to tackle in a future collaboration. This is the Odyssey: Parenting. Caregiving. Disability. I'm Erin Croyle. We'll talk soon.

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 not just our but, you know, my other kids. I have three kids

and, you know, the whole soccer mom thing, you're in the car a lot.

And so my brain is always working, but I don't have a lot to show for it. I, I have written entire books in my head on these drives. I kid you not like, I have this fantasy one day of writing more but that's why I'm going to try to talk to y'all. But this spitballing kind of attitude and I hope that these ramblings make sense, as I think it's important to share this perspective, is this realization I had.

As I was driving to and from these appointments with with Arlo this week, is that I don't have an advanced degree. I don't have,

anything to show for my knowledge, but I'm surrounded by people who are doctors or have law degrees or have PhDs or have masters. I'm surrounded by brilliance and highly educated folks, and I also am educated in the school of hard knocks.

And I say that in a way that like, I'm not woe is me. I feel this level of privilege, part of the reason I went into journalism is one I had undiagnosed ADHD, and I think somewhere in my body I knew that I had an interest in everything. And so I loved the idea of being able to, pick a story and really doing a deep dive and then, the next day it's another another story and another story and just really getting to learn about the human experience.

I find it absolutely fascinating. also my background in communications has allowed me to take my passion for disability rights and advocacy and helping families and sharing knowledge and sharing information and taking my experiences and my collaborations and sharing that to help empower other people.

I think it's so important because I remember early on starting out really holding like my son's, medical team and this really high regard. And then it just I had a light bulb moment, not only with the pulmonologist at that point, but also, you know, later on with, or maybe earlier on with audiology. And it's honestly time and time again where you see that doctors only know what doctors know and honestly, even the professionals with other high advanced degrees, they only know what they know.

And I had a conversation with Arlo's doctor this week that just kind of really sent that home, because he's an amazingly what's the word I'm looking for?

He's just an honest straight shooter. When I asked him, listen, doctor. And I didn't ask for his permission to share his name, but man, would I love to give him a shout out.

But I was like, listen, explain to me my kiddos condition like, you know, about this, but how do you know about this? And we consulted with this other doctor. And how do you know her? Because I saw a team at Boston Children's that really shed some light on, This new blood condition he has is called chronic immune thrombocytopenia. It's apparently incredibly rare.

Right. And so his doctor that we saw on Wednesday where he's getting his new treatment, I was like, well, listen, here's the deal. I see. I work in hematology and oncology and pediatrics, and that's a pretty small specialty right then in and of itself. And then when you take the immune component, right, the immune system component that impacts hematology and oncology, it's even smaller.

And then when you take down syndrome. And immune system and hematology and oncology. Well really there's only a few places in the country and in the world where you know, you have doctors that see a concentration of pediatric patients with those combined things.

And so, the doctors who serve these pediatric patients, kids like my son, they know each other.

It's a small world. You know, you think about the small world and the six degrees of separation and all of that.

It is a small world. And so it was really cool that I get to not only know these doctors, but I like to think of Arlo and myself and the advocacy that we do on a medical front helps inform their work, too.

And he and I, this doctor and I shot the breeze to just about disability in general. And you know, the the notions of disability versus language versus person first, language versus identity first, and disability pride and all of the things It's a really unique experience that we have. Right?

I don't know, it's complicated because I think that the life that I live, and I think that the lives that many of us live when we have children. But then you also add the component of having children with disabilities, neurodiversity, complex medical needs. There's not a lot of time for much else in your life, right? Like I don't really do much other than work kids.

And then my advocacy work, like, I, I mean, maybe I could see friends once in a while, but in my free time, I like to, you know, I don't know, serve on my school board and, help other parents. And, if, if there's any time leftover after that, I sleep or I run. So. Yeah, but I don't mind it because then I get to have conversations with these amazing people, and I feel like we get to surround ourselves.

And if we can find joy and honesty and build relationships in those capacities, it enriches our lives and I guess I'm lucky enough to take that experience that I had with the doctor and share that here with others. And and again, because I'm trying this non perfection route, I'm not sure I'm making sense and I don't really plan to go back and overanalyze if it does. So apologies. Y'all can like shoot me DMs or whatever. And I can try to clear it up or do a follow up session, but that's, it is what it is.

And I think that a lot of us have that whether we're foster parents or we are talking to school teams or teachers, I think that we really need to recognize that, yes, we have professionals in our life, but our own expertise means something, and our life experiences.

It's not something that anybody else can inform on.

Your perspective is your perspective, and it's important. And your child is your child, and you usually know what's best for them.

it's it's interesting because I think about parenting and I think about the people in my life that are not affected by having a kid with higher needs.

And I think about these preconceived notions we have of all of it.

It's it's a fantasy world, being a kid, being a parent, being in a marriage, you know, even having a dog, like, it's all these preconceived pictures we have. And the truth is, we're dealt what we're dealt. And you have to learn to play with the cards that you're dealt. And, I don't know, I got a lot of curveballs thrown at me, and I'm just trying to figure out how to hit them out of the park.

But honestly, it's not really about winning, right? I don't know, hitting it out of the park. Maybe that goes back to that perfectionist piece, but. It's really about trusting your instincts and recognizing that even the professionals, even these people that we have in our circles, that are the experts. They're not the experts on your life.

I think about so often, early on in our life, one of the things I was so fixated on, because we have this medical complex of fixing our kids, you know, we want to fix the disability. We want them to conform to everything. I really wanted him to be able to communicate. And by communicate, I mean communicate.

Traditionally, words speak. there's amazing people in in the down syndrome community, like, my friend David Egan. Right. Amazing public speaker. And I just thought that I could give Arlo enough therapy where he would be able to communicate, like David or like, Frank Stevens

And I really worked hard. I had him enrolled in speech therapy and this therapy and that therapy. And so the point where I was just running myself ragged and Arlo's, little brother Emile was in the picture around that time, too, and he was like, I was interrupting a meal's naps to make sure Arlo got to therapy and just missing out on so much joy of parenting, because I thought that therapy was everything and it was important.

But I was lucky enough to have some professionals in my life then to remind me and help me see the forest for the trees. And one of them, was this amazing speech language pathologist. Her name is Molly Wallace. And she and I were talking about, this program coming up. I'm imagining it still exists.

There's a program called Talk Tools and a speech therapist named Sarah Rosenthal Johnson, who I like to call SR.J. I asked Molly about her. I'm like, so, should I do this? There was, the down syndrome Association was sending out emails, and it was like $800 to have a session with her. And if we can get enough families, we might be able to get a a price and knock it down to like 750 or something like that, like $800 to spend a few hours with someone who apparently is a guru of helping kids with Down's syndrome.

Talk by using these tools that can help, with muscle and motor and all of these things in the kid's mouth and things they can chew on, and all of this stuff. And it's like, Molly,

I don't think I was working at the time or I, you know, I've never because of the whole disability tax.

Right. It's not like it's easy for the primary caregiver to have a full time job and make a lot of money. So it's like it's always a struggle. And so $800 is a lot honestly for anybody. Right. And this was 15 years ago or something like that.

And Molly was like, listen, I use talk tools, but I also just use a little bit of everything because there's no magic formula for anybody.

And I've thought about that time and time again since, there's no one guru for any thing at all. Right. Nothing. So not for our kids with disabilities. there's no guru who can fix anything. You know, there's no one book. There's no one. This there's no one therapists. There's no one strategy. My gosh, if there were one strategy, I would have far fewer gray hairs from our elopement or, you know, my other kiddos refusal to do homework. It's just there's nothing. Yeah. You can you can use the whole toolbox of behavioral strategies. And sometimes it's just a matter of your kid getting old enough to be able to handle it, or finding the right medication mix for their brain to be able to do it.

Or it might not just be possible. And I'm not saying possible. Like I hate taking that out of the equation because I don't believe that things aren't possible. But you know what? Sometimes they look different from what, quote unquote able bodied people think is possible. Right? That's why we have accommodations and modifications. That's why we have the Ada, because sometimes what we or what non-disabled folks see is what we should do is really just ridiculous conformity that we need to rethink how we how we handle it.

But I mean, those gurus too, they don't just apply to the disability world. I think about even some of the stuff that I've fallen for. I think I even referenced Mel Robbins and and and her let them theory like, yeah let them maybe that's a cool idea for a couple things in your life, but an overall overarching theme for everything you do is just let them know sometimes them and do what you need to do.

I'm sorry, but no, there is no one anything for anybody. It's just not how it works. We we learn by listening. We learn by trial and error. We learn by trying. Let them seeing. Maybe it works with one thing and it doesn't with another, and trying something else.

So how do I land this plane on what feels like an ever winding path on my in perfect podcast?

Because maybe end with some sage advice from an anti-guru, which is, question everything.

Even yourself.

Ask questions. Reframe questions. Think about things differently. And and stay on top of stuff. I say this again from experience. I thought that had the right team of specialists. And then I realized, no, you need to explore more. You need to dig deeper. Another big medical component that I can't end this podcast without saying, and I probably should have said sooner, is really stay on top of appointments.

And even if. It seems like you're seeing a specialist every year or every other year,

There are so many times where I took Arlo to see specialists, and I left thinking, what was that for? What was that for? Because when you have complex medical needs, you have to stay on top of more blood tests and see different doctors. It's not just a well visit. It's a check in with the EMT, check in with pulmonology, a check in with geneticist or a developmental pediatrician.

And you know, if everything's going okay, it doesn't feel like a big deal. You get the bloodwork every year and you're done or whatever. Those, annual milestone, developmental whatever tests are and you're done. But that complacency can be very dangerous.

Every time in this journey where I have gotten comfortable or I thought, oh my gosh, maybe this is where things will get easier.

I got kneecapped and it got harder. Not me personally, but

something my poor kid actually got some other diagnosis or you know, when he was officially diagnosed with hearing loss,

I had to learn a whole new jargon and vernacular and then finally wrapped my head around that. And then there was a heart issue that came up.

And then, this, this blood disorder that is now entered the picture. But thankfully, because I kept going to those appointments, that felt pointless. We were never a new patient anywhere. We were always able to be referred quite quickly to get all of the help that he needed. And I think that it's important not to feel complacent and not to think, oh, come on, I can just let this go because you can't.

And that's my unsolicited advice. Just don't just stay on top of things, because one day you will likely need it. And if you don't, that's great. Then it's just an inconvenience every year or every other year. But I still remember, and one of the reasons I feel so strongly about this is not even my own kiddo. It was, a friend of ours back in the DC area who had an adult child with down syndrome, who was going through a mental health crisis and because he hadn't had many health issues, they didn't really have things in place.

And I just mentioned to, oh, well, Kennedy Krieger, which is an amazing institution in Baltimore, part of Johns Hopkins, really great facilities for all sorts of complex medical needs.

There was a patient there at the time and I mentioned this the the parent called and because he was a new patient and because he was an adult, I believe the waiting list was two years.

This person was in crisis and couldn't get the help he needed from the specialist he needed for two years. That's the thing with complex medical needs. Because they're complicated, because the the sort of perfect storm of, of uniqueness combines into disorders that it takes,

a very small team of specialists to are tapped into a very small national or even worldwide network.

You really never want to lapse on treatment. You always want to have connections just in case.

And so that minor inconvenience that is totally worth the trade off.

So I'll leave you with that unsolicited advice. And then just to like, leave with a little joy.

Since these thoughts came to me on one of my many, many road trips, which, again, like looking for the joy in life. Arlo is so much fun to travel with.

And since so much of this was going through my head, like I said on that road trip that we had, I'm curious what road trip songs you like to listen to.

Arlo and I love to jam to all sorts of things, and thankfully, his tastes have expanded from Gangnam Style, and

Or the Lego Movie soundtrack. Oh my god, that song really does get stuck inside your head if anyone knows what I'm talking about.

We listened to everything from Radiohead and of course, to Kendrick Lamar to oh, I don't even know. But one of the songs that popped on that I just randomly wanted to share was Just Breathe. And interestingly, the original is by Pearl jam, but Willie Nelson has a cover of it that is so, so, so good.

What are you listening to these days? So next time, next week when I'm on the road again with Arlo, I would love to know if there's something I should check out. Although I'll probably just listen to the same playlist because I like what I like

it is what it is.

Anyway.

Thanks for listening. Please be sure to share with review, subscribe, like, follow or whatever it is you need to get a ping when the next episode drops.

This is the Odyssey: parenting, caregiving, disability.

I'm Erin Croyle.

We'll talk soon.

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 know if anybody else noticed that. And so I was like, oh, something's up. Something's up with Erin. And that's how easy a pink flag can be. And it's taking that step after.

01:08:44:09 - 01:09:07:13

Patrice Beard

And reaching out, whether it's a phone call, whether it's a text and just saying, are you okay? Sometimes that's all anybody needs to hear. Are you okay? Something's up. But you want to talk to me or not? I'm here. Are you okay? That means a lot to people. I was with my friend at the store. I forgot where we were.

01:09:07:15 - 01:09:28:12

Patrice Beard

The cashier was. She was just very abrupt and she was just very cold and rude, but she was just very blunt. I try to make small talk with her and she just wasn't having it. And I guess some people could think, well, she's just, you know, having a bad day or is she just being a jerk or, you know, whatever you want to say.

01:09:28:12 - 01:09:54:10

Patrice Beard

But, you know, when people react a certain kind of way to you and you don't even know who they are, it's probably not about you. It's just probably there's something going on. So don't take it personal. But I stopped and I looked at her and I said, are you okay today? How's your day so far? And immediately she like, almost like it was a jarring her whole personality change.

01:09:54:10 - 01:10:10:22

Patrice Beard

Like she wasn't even aware the energy she was giving off. I think she was in her brain with what? Whatever was happening, you know, whatever she was going through at that time. But as soon as I said that to her, she just kind of smiled and she kind of came out of it and she goes, thank you. Okay.

01:10:10:24 - 01:10:30:04

Patrice Beard

And then when I left, my friend was like, wow, that's impressive. Like she just kind of snapped out of it and she just that really quick. Whereas you see things on TikTok and you see things like videos where people kind of go at it. I just kind of, you, when somebody is kind of has a high energy, I just kind of kind of come in with a low energy.

01:10:30:06 - 01:10:58:01

Patrice Beard

That's how I look at it mainly. But for you, Erin, I just know you. And just at work, when I know people at work and they look different and they look not that they're sad or but they're more serious if they don't respond in a way they normally respond. Those are pink flags for me. If they're not talking at all and they usually do that, they're sitting off to themselves and being quiet.

01:10:58:03 - 01:11:14:17

Patrice Beard

That's a pink flag to me. So if I had to describe a pink flag, I would say if you know somebody and they're acting any kind of differently. Ask them. Ask them how they're doing. Ask them what they're going through and just go from there.

01:11:14:19 - 01:11:35:07

Erin Croyle

I love that and I wonder you know thinking of those situations and thinking how different people are. I think you already said this, but I kind of want to dig a little deeper. You want to ask them how they are, but you want to. I mean, I imagine you want to give them space to not have to respond, right?

01:11:35:07 - 01:11:53:23

Erin Croyle

So because they might like I know I cry so easily that sometimes I need to hide because I, I just don't want to have to break down in public all the time. So how do you how would you suggest the most gentle ways to do that, to allow someone the space they might need?

01:11:54:00 - 01:12:19:02

Patrice Beard

Oh that's easy. I mean, it's not that hard, is what I want to say. When I help families, who are dealing with mental health conditions in their household, what I'll say is, did you ask, have you asked? And a lot of times they're like, well, no. And it's so it's so obvious. So. Let's take this back.

01:12:19:02 - 01:12:38:15

Patrice Beard

Let's just say I called you asking, and I said, Erin, how are you doing? Or you okay, are you okay? And you're like, I'm fine not to talk about it. I'm good. Okay, then call then. Just. All right. That sounds well. Okay. I just was checking in and just know that I'm here, and then that's all it takes.

01:12:38:15 - 01:13:04:05

Patrice Beard

That's all it takes. I recognize you, I see you, and I'm here for you. You want to call me, text me. Whatever. I'm here. I have some friends. Joan Bruner, she's one of our regional network coordinators at the center for Family Involvement. I know she is a very proud private person, and she is someone that when you reach out and say, hey, are you okay?

01:13:04:05 - 01:13:28:19

Patrice Beard

I'm fine if I like. She just wants to stay busy and she's fine. And that is her personal. And I have to respect that. So we have a code. So when she is feeling, you know, really overwhelmed and she doesn't want to ask for help, but she needs help. The code word is butterfly. So I just told her, I know you don't like to ask for help.

01:13:28:19 - 01:13:52:01

Patrice Beard

I know you're very private person, so if you need me to literally get in the car and come to you wherever you are, but you don't want to talk about it, then you text me butterfly and I will. I will be in the car and I will be to you. So that's an extreme version of it. But you can come up with those kind of things too, if you need to talk.

01:13:52:01 - 01:13:58:24

Patrice Beard

If you need me to just listen, then here's our code word. If you know somebody.

01:13:59:01 - 01:14:22:03

Erin Croyle

I love that. So I like to code word situations that pop in my head are, one, I'm literally on the third round of watching Ted Lasso, once by myself, once with my kiddo, and now with my mom who's in town, because it's just such a beautiful show that touches on mental health and their code word for just speaking the truth is Oklahoma.

01:14:22:04 - 01:14:40:23

Erin Croyle

Just cut through the crap and give me the truth. And then another code word in my house for me and my children. When you reach that level of like when you have kids, and sometimes it's like you have to say, come on, let's go, let's go. When you feel it boiling over, instead of letting it boil over, we say Vegemite.

01:14:41:00 - 01:14:58:09

Erin Croyle

And that's like, I mean, business. But they're allowed to say Vegemite to me, to say, mom, you got to get off my back. I heard you, you know, you're making me boil over and it's those safe words. I think code words are a tool that folks don't use enough. And I think it's a really powerful tool.

01:14:58:14 - 01:15:09:04

Patrice Beard

Absolutely. For us is awesome. I love Ted Lasso. I really like Schitt's Creek. A lot of that has some mental health pieces in it. I just love it. It's just mixture, warm and solid. I really like it.

01:15:09:06 - 01:15:30:04

Erin Croyle

Yeah, and Shrinking is another one. I don't know, folks. It's I mean, it's we might as well just let Apple TV sponsor a podcast for us because they got some great material there that I think when times are tough, you know, leaning on shows that make you feel good is a really great escape, which is a total tangent.

01:15:30:04 - 01:15:36:17

Erin Croyle

But since we're saying and I mean, what are some other really great escapes for tough times that you might recommend for somebody?

01:15:36:23 - 01:16:00:11

Patrice Beard

It's hard for me to recommend anything to anybody because everybody's different. Everybody's self-care is different. Everybody relaxes differently Decompresses differently. Sometimes my decompression is I'll just get on my iPad at the end of the day, if I've had a hard day and I just play silly games just like match three games or, you know, something like Candy crush or two.

01:16:00:17 - 01:16:24:07

Patrice Beard

My kids used to make fun of me, but I'm like, I just need just to numb my brain out and not have a focus. I don't want to talk. I don't want to do anything. Just let me sit here and do this. I know some people. It's going for a walk. I know some people. It's weird. People it's for cleaning, right click cleaning or extra stuff, which is totally not my vibe at all.

01:16:24:09 - 01:16:49:00

Patrice Beard

Whatever brings you joy, whatever decompresses you, whatever is your thing, do it. My brain really likes the water and the ocean, so after a while, a couple months goes by. I'm like, all right, I need to take a trip to get to the ocean. I need to get somewhere where I hear that that is my meditation. Nowhere else for some reason.

01:16:49:00 - 01:17:10:17

Patrice Beard

Even the app on the phone. No, nothing else does for me what the beach does for me. That I can sit and close my eyes and just listen and just. It just takes me, just takes me and I love it. So that's the water is is my place. Some people probably like you like to exercise and run and do all these crazy things.

01:17:10:19 - 01:17:32:05

Patrice Beard

So yeah, it's hard for me to recommend anything like that. I would recommend whatever you are doing to be mindful in that act, and try to just focus on it. Being mindful is really easy to do. That was a big hot word there a couple of years ago when everybody was making, you know, like talking, have seminars on it.

01:17:32:09 - 01:17:54:18

Patrice Beard

It's very easy. It's just focusing on what you're doing. That's it. Try to get all the extra outside noise. That's why the beach helps me. I just focus on the noise. So if you're running, if you're going for a walk, then you're focusing on nature. You're focusing on what you're seeing, what you're hearing, what you're smelling. Just focus on that and try to get all the extra noise out.

01:17:54:20 - 01:17:57:18

Patrice Beard

That's the noise, noise, noise, right?

01:17:57:20 - 01:18:23:18

Erin Croyle

It's funny you say that because as someone who has been diagnosed with ADHD later in life, I struggled so much with trying to meditate and trying to do all the things that people recommend that they say are good for you. And what I have found is my meditation is you got me nailed, it is running and it's running, blasting whatever music makes me feel better.

01:18:23:18 - 01:18:47:11

Erin Croyle

And a lot of times, man, it was Kendrick Lamar's Super Bowl halftime show blasting that with my kids in the car or on a run, or when the world just makes me angry, blasting some rage Against the machine. I come back and I am calm. And so I love that you said it's you can't say what works, it's what works for you.

01:18:47:12 - 01:19:16:05

Erin Croyle

And and it depends on the mood. Because some days it's going for a hike in the woods without any noise. It just depends on on the day. And you know, our show is for caregivers. And so this is helping identify for our children. Like, for example, my son, my oldest has multiple disabilities, Down syndrome. It's hard for him to communicate his needs, but his happy place is by the water throwing rocks in the water.

01:19:16:05 - 01:19:35:17

Erin Croyle

And so we try to get out whenever we can. Going by a waterfall, I think. Water. I talked to another one of our colleagues, Jill Rose. Let's just namedrop all of our people, right? She talks about how she's a very spiritual person and how water is just something that can really soothe us as humans and soothe our aura, if you will.

01:19:35:17 - 01:20:11:09

Patrice Beard

So anything that you can use your senses, your other senses for is amazing. I always feel like sometimes the hardest place to be is in my own head. And I have to do things that force me to get out of my own headspace. It's kind of easier for me to sit in my headspace. I have to make an effort to get my shoes on and get dressed and go outside and go for that walk, or go get in the car and drive two hours to the water.

01:20:11:11 - 01:20:50:03

Patrice Beard

It's much easier just to sit at home. But I have to make myself a priority because if I don't and so much time goes forward, I just sink lower and lower and lower. And I always tell people practice what you preach, but I'm the worst person. You have to take the time to fill your well. If you don't fill your well, for me, filling my well is, maybe watching Schitt's Creek or maybe going to the pool in the summertime, getting that sun, going to the beach.

01:20:50:03 - 01:21:09:06

Patrice Beard

That's how I fill my well. And if I don't take the time to do that, then I just don't feel like I'm a good person. So much time goes forward and I'm like, handing out dirt, you know? I'm just like trying to help people with the bottom of my well, and that's why it's so important that I take the time to do what I do.

01:21:09:08 - 01:21:35:03

Patrice Beard

It's a tricky thing. The brain is a tricky thing. You can as many bad things as we say to ourselves internally. For me, I know like I can be that person. It affects your brain, right? So if my in dialog is constantly negative, then I'm going to just feel that. Why can't my inner dialog be positive? Why can't I feel myself positive?

01:21:35:03 - 01:22:06:01

Patrice Beard

But for some reason we we tend to do the negative. I don't know if it's easier for us. It's harder for us to look in the mirror and find something that we like because of the way we're feeling, but we really need to do better with that. I think I know when my daughter, when she was young and she used to look at herself in the mirror and she'd say, I hate this, I hate that, I hate this, and I'm like, okay, so now look in the mirror again and I want to hear you say like five positive things about what you like about yourself.

01:22:06:03 - 01:22:31:12

Patrice Beard

I was listening to a podcast one time about how to retrain your brain to be positive, how you can literally do things, say things to yourself to bring your mood up right, and to get out of that crud. And it's weird. So one of the things was like, brush your teeth with the opposite hand. That kind of stimulates your brain because your brain rewires, restarts, regenerates your brain, right?

01:22:31:17 - 01:22:58:24

Patrice Beard

Something with your opposite hand. It's awkward, right, to do things with your opposite hand. That's really good for your brain. Yeah. Another thing he said to do was, look, this was the hardest thing for me. Look in the mirror. Look at yourself. Stare at yourself in the mirror and tell yourself out loud that you love yourself. Just say I love you to yourself in the mirror at least five times.

01:22:59:01 - 01:23:23:09

Patrice Beard

And I did it. I don't keep doing it because it's awkward, but like the third or fourth time I said it, I got chills and I started crying. Because I realized, I don't think I've ever said that to myself before, so I would recommend everybody do that. I just think all the negative things we said, our self and our inner dialog so negative.

01:23:23:09 - 01:23:39:21

Patrice Beard

I would challenge you every time you catch yourself doing that to say something positive, to counteract the negative and just see what it does. But I recommend, Erin, that you today, at some point out loud, look at yourself in the mirror and tell yourself that you love you.

01:23:39:23 - 01:24:03:10

Erin Croyle

I love that idea. I can see how challenging that would be. And I think as parents you recognize how important that is. But you don't do it for yourself because you see how hard your children are on themselves. We're so busy modeling what we I think what we should be modeling for our kids, but we're not truly believing it.

01:24:03:12 - 01:24:17:20

Erin Croyle

So the idea that you would take time to actually practice what you're preaching and truly mean it, I will try that. The self-hate. I don't know where we learned that from, but man, we are our hardest critics, aren't we?

01:24:17:22 - 01:24:38:13

Patrice Beard

Oh yeah. Absolutely. Talking about pink flags. I would agree, Erin, with what you just said because I think. Spotting a pink flag and others is probably a lot easier than spotting a pink flag in myself, even though.

01:24:38:15 - 01:25:07:10

Patrice Beard

It's pretty apparent. So I don't know why. Why are we so likely to observe things and others that we're not willing to observe in ourselves? It's a good question, because I think I'm exhibiting some pink flags here lately. I'm stressed. I'm having a hard time focusing, not exercising like I should. Staying in the house too much.

01:25:07:10 - 01:25:23:04

Patrice Beard

I get little reclusive, but I recognize that in myself. I feel like there are times I'm exhibiting pink flags all over the place, so I don't know enough, and I'm not attending to them like I would others. So I guess that's something we should all work on.

01:25:23:06 - 01:25:47:12

Erin Croyle

Yeah, and I think especially as women, because as women we are conditioned from day one to be nurturers, to care for others. I and I think it gets tiresome to hear about the mental load we carry, but it needs to not be because we do carry more typically speaking, than a lot of our counterparts. And it's a lot.

01:25:47:12 - 01:25:58:09

Erin Croyle

And I don't think we give ourselves enough credit for how much we take on that is just assumed that we can handle it.

01:25:58:11 - 01:26:34:10

Patrice Beard

I would say the reason why pink flags are so important in recognizing that is because in the mental health world, we tend to be reactive and not proactive. So if we focused on the proactive, the proactive would be recognizing the pink flags and addressing the pink flags. Is this person securing themselves? Is this person is our hygiene going to, you know, and that you clearly see that they're not taking care of themselves anymore?

01:26:34:12 - 01:26:56:13

Patrice Beard

Are they withdrawing? Those are like pink flags that in the mental health world they're warning signs, right? Are they crying all the time or have you not heard from them for a couple weeks? And have you ever had that experience where, like, I've not heard from so-and-so for like a while now? Well, I think that's a pink flag.

01:26:56:13 - 01:27:19:04

Patrice Beard

I think that is your pink flag. That is your it's time to text. It's time to make a phone call and just reach out if you haven't answered your phone. Erin Other just texted you. That's all it would have been. Hey, I'm here. Just wanted to check in everything okay? Instead of reacting. Like I said, in the mental health world we are very reactive as opposed to proactive.

01:27:19:06 - 01:27:48:12

Patrice Beard

And so when we hear things in the media or we hear things extreme, my question is what were the pink flags? Because I know there were some, you know, and usually when the story comes out and more information comes out and you start hearing experiences that the public have had with an individual or anything like that, there were pink flowers along the way.

01:27:48:14 - 01:28:15:10

Erin Croyle

What would you say the difference is between a pink flag and a red flag? When we're talking about mental health, especially considering my understanding of how, suicidal ideation, a lot of times people don't see it coming. So, you know, when you're saying hygiene and staying in more, what's red? What's pink? And it sounds like it's a big old lots of different shades that we're dealing with on a spectrum here.

01:28:15:12 - 01:28:41:12

Patrice Beard

Yeah. You're right, pink flags are different for everybody. The pink flag for me was you, Erin was that you responded all right. You didn't respond like you would normally. And I knew enough to know that. And I could hear the break in your voice. So that was a pink flag. If I'm living with somebody, their mood changes for a long period of time.

01:28:41:14 - 01:29:01:05

Patrice Beard

If they don't want to go out and do anything and that normally they would, if they're not sleeping, if they're pacing well, you know, normally at night instead of sleeping, they're not they're tossing and turning. They're up. They're not getting their rest of their sleeping habits change. Things like that can be pink flags leading to a bigger issue not eating right.

01:29:01:07 - 01:29:23:03

Patrice Beard

And what's important to know is there are circumstances in our lives that we all go through things right? Like if there's a death in the family, a job loss, we all go through things. I'm talking about things that change us for over two weeks. It is ongoing and we are just not getting better. Those are the things I'm referring to.

01:29:23:05 - 01:29:49:06

Patrice Beard

Angry a lot of times. I'll tell you a lot of times for women, we cry sometimes, right? That's our pink flag. We're sad. We're depressed. We miss the pink flags with boys because they tend to be angry. They tend to all of a sudden, if you have a boy that's wanting to fight, they're starting to get into a lot of fights in school or being argumentative or just angry.

01:29:49:08 - 01:30:09:05

Patrice Beard

And they don't know why they're angry. They're just angry. That's a form of depression. And it's just so different. A lot of times in boys and men. So things like that, like if you notice somebodies personality changing and things like that, those can be pink flags.

01:30:09:07 - 01:30:34:13

Erin Croyle

And when you see those, I mean, it's thankfully the stigma around talking about mental health is lessened, but it's still there. You know, it still gets an eye roll or the brush off. So how can we talk about mental health in a productive and proactive way? How can we get that loved one or close friend? It's not as easy as saying, oh, that's a mole.

01:30:34:13 - 01:30:41:13

Erin Croyle

You need checks, right? How can you get someone the help they need? Whether it's a pink flag or a red flag?

01:30:41:15 - 01:31:12:15

Patrice Beard

I really think that's the million dollar question. I still think we have a long way to go with that. I think just letting somebody know that we're here for them, whether it's using a code word or, sometimes we want to fix things, and sometimes we just need to remember that if you just let somebody know, if you just want to talk, and I'll just be here to listen, sometimes you just want to talk and just have somebody listen to you.

01:31:12:17 - 01:31:32:07

Patrice Beard

You know, when we're going through stress and I've got something in my head going over and over and over and over. Never. Right? Works both ways. I have to say to my spouse or to my friend, I'm going through something right now and I really want to talk about it. I really need to vent. I you open to hearing me right now.

01:31:32:07 - 01:32:17:08

Patrice Beard

Are you in a good headspace to hear me right now? Can I vent with you? You don't have to say anything, but do you have the head for right now? And she's either yes or no. And then if it's yes, then I've been just trying to be there for one another and just being and just listening. You would be surprised how just giving somebody an ear and just sitting and listening, and also being a mental health specialist, I have to say, if ever you feel like after somebody is talking to you, if ever there's a question, if ever anybody says anything about hurting themselves or not wanting to be around or wondering if life would

01:32:17:08 - 01:32:46:02

Patrice Beard

be better without them around or wanting to end their suffering or things like that. Always ask the question like, I hear you saying these things. Do you feel like, are you thinking about killing yourself or hurting yourself? Don't say committing suicide or don't make it fancy. Don't say don't use. Just be very blunt. I'm a little worried about what I'm hearing.

01:32:46:02 - 01:33:05:22

Patrice Beard

Are you thinking about killing yourself or hurting yourself? Ask the question. Never be afraid to ask the question and I always say that to the parents I speak with when I'm here, and certain things about what's what they're saying their child is going through and these things that their child is saying. And I'll say, have you asked them if they thought about killing themselves?

01:33:05:24 - 01:33:27:04

Patrice Beard

Well, no, I don't want that to happen. Or they'll start whispering to me. I'm like, well, why are you whispering? Like, you know, you don't want to be that parent. That's surprised, right? If you feel it, if your spidey senses are going off, or if you're seeing little pink flags and or hearing things that just ask, you must ask.

01:33:27:06 - 01:33:53:10

Erin Croyle

That was the most interesting thing. I interviewed someone, many years ago at this point, who works with suicide prevention in Veterans Affairs, and I was surprised that, you know, you you don't try to shy away from that question. You're better off making it an open topic of discussion. That is the healthiest way to handle it is to bring it out into the open.

01:33:53:10 - 01:34:15:03

Erin Croyle

Is there? I still don't I mean, I guess I understand why these are such difficult things to even speak of, because it's just so heartbreaking to to think that someone might think that that's the answer to ending the pain. Can you share anything about the research behind why it's so important to talk about it?

01:34:15:05 - 01:34:35:13

Patrice Beard

There is no increase of somebody, somebody trying to kill themselves just because they've talked about it. It's not something that you ask them and they're like, oh, I wasn't thinking about it. But now that you said it, I mean, it's just it's just not. They've done studies on people who have tried to kill themselves, and they've asked them, would it have helped if somebody had asked?

01:34:35:13 - 01:34:50:14

Patrice Beard

And the answer is yes. It doesn't harm you when somebody asks if you want to. And the answer was no, that's not it. I'm thinking about it or I'm not. Somebody is not putting that thought in my head. Are you familiar with a Kevin Hines?

01:34:50:16 - 01:34:52:00

Erin Croyle

No.

01:34:52:02 - 01:35:23:01

Patrice Beard

Okay. So he travels the world and talks about his suicide attempt. He jumped off the Golden Gate Bridge and survived. It's an amazing story. You may want to research it. He's got a short documentary ending now. Travels the world. He woke up in the morning knowing that he was going to go to the Golden Gate Bridge and jump off and kill himself, and he talks about how he runs into his father knew something was off, which was interesting to me.

01:35:23:01 - 01:35:43:00

Patrice Beard

His father knew something was off. So his father saw a pink flag and didn't address it. His father said, hey, why don't you come to work with me today? Because he knew something wasn't quite right. And he goes, no, I'm good. I'm not going to go to work with you. But he didn't say, are you okay? What's going on?

01:35:43:02 - 01:36:03:22

Patrice Beard

Where are you? Go. You know anything like that? He said on his travels to the Golden Gate Bridge that day. At any given time. And somebody stopped him and asked him if he was okay and if he was going to kill himself, he would have told them yes, he was full on ready. I mean, he was ready. He was going.

01:36:03:24 - 01:36:31:09

Patrice Beard

It's a very interesting story. He did jump and he said immediately when he jumped, he was like, oh, I don't want to do this. So now his mission is not only going around and sharing his story, he also has interviewed and talked with a lot of, suicide survivors. And they have all said immediately after they're like, no, this is not what I want to do.

01:36:31:11 - 01:36:34:24

Patrice Beard

So I think you're just feeling desperate in a situation.

01:36:35:01 - 01:36:43:05

Erin Croyle

I imagine, to be in that place, to know that someone cares enough might make you feel as.

01:36:43:07 - 01:37:12:10

Erin Croyle

It's worth living. It's such a tough subject. It's funny. I'm worried about saying the wrong thing in this interview and part of me is thinking I should edit this out, but not this all out. But my stuttering and rambling. But I think it just goes to show what a delicate subject it is and how I think talking about it and learning, and to talk about it openly without feeling as if it's taboo is important, especially with the rates on the rise.

01:37:12:10 - 01:37:16:21

Erin Croyle

So much just knowing that we can and should talk about it.

01:37:16:23 - 01:37:36:23

Patrice Beard

It's on a slight decline finally, but especially for children. So suicide is the second leading cause of death for teens and young adults ages ten through 34. And that's a study done from the CDC in 2023.

01:37:37:00 - 01:38:03:12

Erin Croyle

That's shocking and honestly heartbreaking. Patrice, if you're a parent who maybe your young child's mentioned it or you have suspicions aside from talking about it, I mean, is there things that you should do at home to look out for them, like hiding knives and razors? I mean, how should you handle that if you're worried about a young child, right?

01:38:03:14 - 01:38:06:11

Erin Croyle

Who might be having thoughts of suicide?

01:38:06:13 - 01:38:37:17

Patrice Beard

Right. It's it's really scary. The first thing is, if you think of your child, if you ask your child, do you want to kill yourself or your child says, I want to kill myself, I'm going to kill myself. Then I would say, well, what is your plan like? So sometimes, you know, we know our child, right? Sometimes a child will be very dramatic, will say, oh, I want to kill myself all blah, blah, blah, you know, and and that's an opportunity to have a very stern, serious conversation with your child.

01:38:37:17 - 01:38:56:21

Patrice Beard

Do you mean this because you have my full attention right now? Are you truly feeling this way? Because if so, I've got you. I will take care of you. We will get some help. I want you to not have to feel like this. So pay attention to it. They need to know that if they say this to you, you will take it very seriously.

01:38:56:21 - 01:39:15:06

Patrice Beard

That is not something you just said. If of course, number one, if you feel like your child or your child tried to kill themselves, your child is looking at you saying, I'm going to kill myself. If they have a therapist already or a psychiatrist already, you want to reach out to them and let them know what's going on and get further instruction.

01:39:15:12 - 01:39:32:19

Patrice Beard

If you don't have anything like that, then you want to take them to the pediatric e.R and drive them there and get evaluated, and let a pediatrician come in and speak to them and decide what's the best course of action to take.

01:39:32:21 - 01:39:54:16

Erin Croyle

Man, Patrice, we've gone from, you know, pink flags to suicide. And it feels heavy. So I really want to just make sure we touch on what some of the most positive developments you've seen around mental health are, and, but also places we need to grow. Can you tell us a little bit about that?

01:39:54:18 - 01:40:23:12

Patrice Beard

Well, that we talked about before stigma is better right. Especially in schools. Schools are talking about mental health now and acknowledging that mental health is a very serious thing. And it's just as important as our physical health, mental health. We've actually gone on to talk about mental health for our teachers. So when I do presentations now, it's not just about the children's mental health.

01:40:23:12 - 01:40:57:03

Patrice Beard

It's also about the teachers mental health. So we are coming to a better understanding that mental health affects everything. It affects grades, right? It affects relationships and affects test scores. It affects everything. And I think having that acknowledged now and how important that is, I think we've come a long way with that. I don't remember when I was a child teachers talking to me about mental health.

01:40:57:05 - 01:41:04:05

Patrice Beard

I mean, do you remember that at all? And now they have curriculums about it.

01:41:04:07 - 01:41:05:16

Erin Croyle

Oh, absolutely.

01:41:05:22 - 01:41:30:10

Patrice Beard

And that has come so far. It's come so far in a short amount of time. I'll say my child is 30, and I'll tell you when she was in elementary school and going through things and running out of the classroom and having panic attacks, my instruction was just to come get her and get her out of there because she was being disruptive.

01:41:30:12 - 01:42:02:11

Patrice Beard

I had an experience where my brother had passed away. My kids were in elementary school, and she was having a hard time in class. I was having a hard time getting up in the morning and getting my kids to school. So they were there were laid a lot, five, ten, 15 minutes late a lot. And for anybody that has kids in school, you know, at least in the county that I was, living, if you're tardy so many days that it counts as an absent.

01:42:02:13 - 01:42:21:05

Patrice Beard

So if you're tardy, like five days, then you get an absent. I remember I was called into the office that I dropped the kids off one day, and it was full knowledge that my brother had died recently and what was going on. So that should have been paying folks to the school, but to the teachers, to the school.

01:42:21:06 - 01:42:49:22

Patrice Beard

They all know what was happening. They all knew what took place. And instead of acknowledging or reaching out and saying, how can you support you? We know that you're going through a lot. We see that your kids are late. What can we do? And things like that. They decided to bring me in to the office with the teachers there and the social worker, break me and shame me and want an explanation of why my kids were late for school.

01:42:49:24 - 01:43:12:06

Patrice Beard

And so I completely went off and I left them all sitting there with their mouths open and basically saying, shame on you. Up and walking and getting up and taking them to school. You should be happy about that. You know what I mean? So from that to the way things are now, I don't think that would have ever happened to what happened now.

01:43:12:12 - 01:43:36:04

Patrice Beard

So I do think schools have come a long way. The latest statistic that I saw that that the suicide and self-harm arch is going down with kids. So the study I just told you about from the CDC was 2023. Takes a while to get statistics back from studies, but I'll probably do another study in like 26, 27 and, you know, see that is starting to go down a little bit.

01:43:36:09 - 01:43:54:10

Patrice Beard

So I think that's great. And I think just acknowledging it's great, I think by acknowledging it and having schools talk about it, kids feel more comfortable talking about it where we didn't talk about it when I was growing up or because it was a it was a stigma, was a shame, like mental health. What is that back up?

01:43:54:12 - 01:44:07:09

Patrice Beard

I mean, we knew about bullies and we had bullies in our schools and how it affected us and how it made us feel. And but now it's a different thing. So I think we've come a long way. I think we can come even further.

01:44:07:11 - 01:44:17:07

Erin Croyle

Yeah. And I mean, it also starts at higher ed where there's education about this for not just special ed teachers, not just social workers, but for all educators.

01:44:17:09 - 01:44:37:08

Patrice Beard

Right. And how many social workers do you have in one school? Right. I mean, sometimes you have social workers that have multiple schools, and half the time all they're doing is the IEP stuff or the 504 stuff. So they can't really focus. And then you've got the counselors doing that as well. And then for my daughter, she had a counselor assigned to her in high school.

01:44:37:14 - 01:44:57:12

Patrice Beard

And all that counselor did was paperwork. And if she was having a meltdown or feeling bullied or anything, she would say, oh, come on, sit in my classroom. But there was no interaction there. And I don't know, it's just I don't know. The answer is there's a lot going on there. I think obviously money is at the stem of it.

01:44:57:12 - 01:45:03:01

Patrice Beard

All right. So we could do anything we want if we had all the money in the world.

01:45:03:03 - 01:45:40:14

Erin Croyle

Yeah. When that I mean, that just kind of. And I don't want to end on something negative, but I do really want to, and maybe it's not so much a question, but just one last part of this conversation when we talk about taking those mental health days and taking those breaks that you need and self-care, it's something that I have explored in this podcast and in my writing and in my own life, where when you do attempt to take care of yourself, you have to put other things aside.

01:45:40:14 - 01:46:05:14

Erin Croyle

And so when you then reenter, taking a break or taking a vacation or recovering from surgery or taking care of a sick family member, then you have to catch up and it's like you're trying to get the help you need to be better, but you're coming back to four times the amount of work that just piles on. So how do we support one another in fixing this?

01:46:05:16 - 01:46:15:13

Erin Croyle

How do we spread the word about the way that we function as a society needs to change? I mean, how do we make this better?

01:46:15:15 - 01:46:32:01

Patrice Beard

Well, like I said before, we all have to. What works for me when it not work for you might not work for another person. So one person going away to the beach while I have the money to do that, and I have the time to do that, not everybody has that. That's why I said one size doesn't fit all.

01:46:32:03 - 01:46:56:09

Patrice Beard

So it could be your time is soaking in a tub for 30 minutes. It could be you're in your room doing something for an hour. I would say, be gentle with yourself and not make it so extreme. That's unattainable. You can get your self-care and you can feel your well. However your life circumstances allows you to do it.

01:46:56:09 - 01:47:13:11

Patrice Beard

Take that time and do it like I don't want to say one size fits all. I don't want to put any more guilt on a parent that probably already has so much guilt. Oh my gosh, now what am I doing? Self-care. Right now I don't have I don't have the money to do that. I'm a single parent. I can't do this.

01:47:13:11 - 01:47:31:11

Patrice Beard

I can't do that. So just do what works for you. If I can give any kind of advice at all, I would just be be gentle with yourself. Stop. Stop beating yourself down. You're doing the best you can. Do whatever you can with what you have. Maybe it's just talking to a friend on the phone. Just chill. You know what I mean?

01:47:31:11 - 01:47:58:18

Patrice Beard

Just take that time. Sometimes I'm talking to a parent on the phone, and the whole time we're talking about their child, their child, their child, their child, I will always make time to say, okay, now let's talk about you. What are you doing to take care of you? And a lot of times if they've been talking nonstop for an hour, that's the only time they'll be silent because they're stopping and thinking what happened.

01:47:58:20 - 01:48:31:20

Patrice Beard

Like I'm so focused on my child and understandably so that you've forgotten about yourself. So what are you doing to take care of you? There's always something you can do, whether it's sitting outside on your front steps or taking a quick walk or binge watching or I don't know what. There have been times my husband traveled a lot, and there were times where I've had to put up my boundaries and say, I don't have the energy for this right now.

01:48:31:22 - 01:48:51:17

Patrice Beard

Give me an hour. And I don't think there's anything wrong with that because I think your modeling behavior, your modeling, your behavior to your child, like I'm taking care of myself right now. I'm giving myself I'm important to love you, but I need an hour and then I'm going to connect that with you. And then I'll listen to what you want to talk about.

01:48:51:19 - 01:48:56:24

Patrice Beard

You know what I mean? So modeling that behavior is so important.

01:48:57:01 - 01:49:26:11

Erin Croyle

I do, and when you're saying this, I'm thinking because a lot of times I like I ask questions because I'm trying to think for myself. And, and families like myself and parents like myself, we allow ourselves to get to such a level of burnout where we feel like we need to just lay in bed for a day, and that day, then everything stacks up where, as opposed to that, I think we need to think about it like chipping away at a statue slowly.

01:49:26:14 - 01:49:57:19

Erin Croyle

What are the five little things I can do of self-care to just maintain, whether that be filling the water bottle and drinking it, making that doctor's appointment, going and answering emails on the deck instead of in a dark office. I think there are such, preconceived notions and honestly, the commercialization of self-care. But we really need to reframe what it is taking care of ourselves looks like.

01:49:57:21 - 01:50:22:05

Erin Croyle

So we're talking a little bit about how to care for ourselves. But the pink flags are also about people around us who might not have the privilege to listen to a podcast like this. To understand Patrice, I keep thinking about the person you mentioned to at at the checkout counter and, and I wonder what are the things that we can do throughout our day for those around us?

01:50:22:05 - 01:50:48:16

Erin Croyle

Like I tried to say, oh my gosh, I like your nails or something. When I'm somewhere for someone who doesn't have a job like yours and mine, where we can work from home. So for the people who might be having the worst day ever, but they've got to be public facing, what can we do to show kindness even if people aren't showing a pink flag but might be going through some stuff?

01:50:48:18 - 01:51:12:22

Patrice Beard

I think you just hit the nail on the button by showing kindness, just being observant and just being kind, just being nice sometimes just smiling to somebody just once. So how how was your day? How are you doing today? Like, that's all I did with that person that was working the cash register. I could tell something was maybe not, but she seemed a little, like very serious and abrupt.

01:51:12:24 - 01:51:30:02

Patrice Beard

Or she was kind of looking past me and not even know at me. And that's why I said, how's your day? How was your day? And she immediately is almost like you could see her shaking something off, you know, and she just kind of she was all, thank you for I'm like, okay, you know, just being kind to one another.

01:51:30:02 - 01:51:49:04

Patrice Beard

I know that sounds silly, just being kind to one another. We are all going through things. That's what helps me remember it, because have you ever been in a situation where you in the car or you're somewhere and you snap at somebody or you or you're like somebody cut you off and and you're like over the like, I know me, I'm a road ranger.

01:51:49:08 - 01:52:16:15

Patrice Beard

Like some funny type of like how I'm responding. I'm like, well, gosh darn, you know, like, that wasn't about me. That wasn't about that person. What? My goal. Like, I need to check myself. I'm. I'm stressed. I'm aggravated, I'm mad at somebody or whatever the situation and and how I react to others. I try to remember that. So when I'm on the receiving end of that, it helps me to remember that's not about me.

01:52:16:17 - 01:52:27:22

Patrice Beard

That's that's not about me. So I'm not going to react to that. I'm just going to try to take it like you. Good. That's what I tried to remember and that's how I try to behave.

01:52:27:24 - 01:52:57:11

Erin Croyle

Well, I love that you mentioned the car as well, because I think especially with how much time we all spend online and when we're our cars, we feel like when you're not face to face, whether it be comments on social media or in your car, there's a level of of animosity we give to one another where, man, it's really nice when someone just waves when they let you in on the highway or.

01:52:57:12 - 01:52:58:01

Patrice Beard

Yeah.

01:52:58:03 - 01:53:19:10

Erin Croyle

You just either don't comment on social media or give a heart on something, or just the kind of scenarios where no one even has to know who you are remembering. Like if you were talking that way to someone to their face, how would you actually say it? And probably the best example and and for people who are listening, they probably deal with this a lot.

01:53:19:11 - 01:53:42:20

Erin Croyle

You know, the amount of phone calls we have to make to insurance companies to handle medical bills or whatever, and those phone trees. And by the time you've hit the button and gotten cut off and you actually talk to a human, I literally have to check myself because I get to a level of frustration, and then I kind of vent at them and I'm like, I am so sorry, you're just the messenger.

01:53:43:01 - 01:53:52:12

Erin Croyle

I pull myself back and I'm like, oh my God, this is a human on the other line. So just remembering the human on the other side of whatever interaction we're at.

01:53:52:14 - 01:54:23:19

Patrice Beard

Going through, going through the same stuff to right, right. We're all going through stuff. This is hard times right now. We are all going through things. But I think if we all will just allow grace, respect, and just like, you know, keep your mouth shut. I have to say it, social media is horrible. I love like scrolling through different things, but it's amazing to me like I'll have to tell like family members don't be on it.

01:54:23:21 - 01:54:47:21

Patrice Beard

Like if it stresses you out, if it's causing you what I'm saying, cause you get out of it. That's the only thing. The only thing you can control is yourself. That's it. That's it. So thing you have control over is how you react to things. So if something is making you upset and causing you this kind of emotion, get off of it.

01:54:47:23 - 01:55:05:19

Patrice Beard

You know, I mean, I think I'm like the polar opposite. I keep my head in the sand. I don't know what I think that's going on, because to watch the news, to watch these things, it just sends me to where I can't sleep. It robs me of my peace. Oh well. Anything to rob me of my peace. I think that's why sometimes I get secluded in my house.

01:55:05:19 - 01:55:21:10

Patrice Beard

Because I'm like a peace here. Oh, look at my a little bubble, which is, like, not the best thing to do. But yeah. So anybody to rob me of my peace, if I can control that, if I know what's doing that to me, then I'm just not going to do that anymore. Yeah, I'm not going to be on social media.

01:55:21:10 - 01:55:42:06

Patrice Beard

I'm not going to watch the news. And at the same time, I don't want to talk about it either. And I have that right to do that. So if somebody is venting about something that causes me, then that's that boundary. We talked about. I don't want to talk about that. And I think if anyway, I'm just get off on a tangent, Erin.

01:55:42:06 - 01:56:04:14

Patrice Beard

But this social media is just killing me. My my daughter. I don't know why, but she posted her picture on this platform because she thought that it was a woman empowerment platform and that they would give her pointers, if you will, about her appearance. On what she could do to improve. And I'm thinking what in the world do you think?

01:56:04:16 - 01:56:21:19

Patrice Beard

She said within minutes she was in tears because these women were coming after her heart, just, oh they have souls like, you know like about her hair and the glasses like this and this or this. I'm like, why would we do that to one another? Why would we go out of our way like you were talking about social media.

01:56:21:19 - 01:56:31:15

Patrice Beard

Why would we go out of our way just to be nasty to one another when it was just as easily just said, go, girl, you rocket, you know, give full or just scroll through it, right? But I don't know.

01:56:31:18 - 01:57:04:20

Erin Croyle

We're just you know, I think sometimes people think being on their phones is self-care, but there are studies that show that all that time is actually really not great on our brains. And we're just it's the tip of the iceberg, what we're learning about how hard it is for us. And when I think about how addicting that scrolling can be as an adult who wasn't introduced into that until like their 30s and our kids being integrated into it now, yeah, that is some scary stuff.

01:57:04:20 - 01:57:24:18

Erin Croyle

And I think when we talk about mental health, we really need to learn boundaries and recognize that a fun show is one thing. But the rabbit hole that social media and even YouTube can take you on that can actually have some really negative impacts. And we have to really, really be careful for ourselves on there.

01:57:24:20 - 01:57:29:20

Patrice Beard

I can fall into that sometimes. I'll just like kind of like badge and especially with my ADHD.

01:57:29:22 - 01:57:30:13

Erin Croyle

Yeah.

01:57:30:15 - 01:57:52:23

Patrice Beard

Just that whole squash golf ball scroll, scroll. And then I just like how and then I'm thinking afterwards, how am I feeling now? Like, where am I right now? What where is my head right now? Am I am I smiling like when I watch Schitt's Creek or Ted Lasso? Am I smiling or do I feel, like I'm not anxious?

01:57:52:23 - 01:57:58:15

Patrice Beard

Right? Because being in tune with yourself and how you feel and when you're doing something. Yeah.

01:57:58:17 - 01:58:18:04

Erin Croyle

Well, Patrice, we're way over time, and I adore you. And I want to thank you. And I also want to say that after we're done here, I'm going to go in the mirror and very uncomfortably tell myself that I love myself five times. Five times. You better do the same. You said it's been a while.

01:58:18:06 - 01:58:18:17

Patrice Beard

Yeah.

01:58:18:17 - 01:58:24:19

Erin Croyle

And now feeling your own pink flags. And I'm seeing some. So why don't we both go do that and be very uncomfortable?

01:58:24:21 - 01:58:26:11

Patrice Beard

Yeah. Sounds like a plan.

01:58:26:13 - 01:58:27:22

Erin Croyle

Thank you so much, Patrice.

01:58:28:02 - 01:58:31:15

Patrice Beard

You're welcome. Thanks for having me. Always great talking to you, Erin.

01:58:31:17 - 01:58:39:03

Erin Croyle

Right back at you.

01:58:39:05 - 01:59:07:20

Erin Croyle

And thank you, listeners, for joining us. And please join Patrice and I in the I Love You practice. Go stand in front of a mirror and tell yourself with sincerity that you love yourself five times. Of course, you have to report back. I want to know how it made you feel. And while you're at it, be sure to share, review, subscribe, like, follow or whatever it is you need so you get a ping.

01:59:07:20 - 01:59:18:13

Erin Croyle

When our next episode drops. This is the Odyssey: Parenting. Caregiving. Disability. I'm Erin Croyle. We'll talk soon.

For so many of us, the idea of self-care is a joke. And for good reason. There are literally not enough hours in the day to do what's "required" of us, let alone take a break to focus on ourselves.

Rather than telling you why you need to make time, this episode offers validation. And some tangible takeaways that are actually doable!

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.

SHOW NOTES:

Carolyn Hax is the syndicated advice columnist with The Washington Post mentioned in this epsidoe.

SLIDES:

TRANSCRIPT:

01:00:06:24 - 01:00:34:24 Erin Croyle Welcome to the Odyssey. Parenting. Caregiving. Disability. I'm Erin Croyle, the creator and host. The Odyssey podcast explores the turn our lives take when a loved one has a disability. My seismic shift came when my first child was born with Down's Syndrome in 2010. I've been going virtually nonstop ever since I joined the center for Family Involvement at Lucas Partnership for people with disabilities.

01:00:34:24 - 01:01:03:14 Erin Croyle A few years after he was born. Utilizing my journalism and TV producer skills as a communications specialist, a topic that comes up time and time again in my work and my life is self-care. And for good reason. If you ask a parent who's also the primary caregiver in their family their thoughts on self-care, you'll probably get an eyeroll or a laugh or a stare down that feels like daggers shooting right through you.

01:01:03:16 - 01:01:30:08 Erin Croyle The reality is, for so many of us, the idea of self-care is a joke. So rather than me talking about how important it is and why you should prioritize it, I'm going to break down why self-care is practically impossible. Instead of the usual self-care gaslighting, it's time for some validation as to why we either can't seem to make it happen or suffer when we do.

01:01:30:10 - 01:01:41:09 Erin Croyle And maybe offer some practical, attainable ways to take care of you.

01:01:41:11 - 01:02:06:19 Erin Croyle Real talk as usual. I actually have an interview with our mental health specialist, Patrice Behar that's in the can that I can't wait to share with you. And I've got a few other interviews that I can't wait to line up and do, and, I mean, I say this over and over again because it's true. Things are just relentless in my life, and I know that I'm not alone in that.

01:02:06:21 - 01:02:34:23 Erin Croyle In the past month, I did a talk about self-care to, caregivers in Ohio, where I'm from. Shout out. Represent. Love that state. Even though it's the butt of so many jokes, especially with my, Gen Z Gen Alpha kiddos. Anyway, what kept resonating with me is I was like, struggling. Finding time to edit that interview with Patrice is to practice what I preach.

01:02:35:00 - 01:03:06:11 Erin Croyle So I recognize that I have been bombarded with life. And as parents and as humans, that's what happens. But what we don't really take into account is that as caregivers, that happens sometimes times a thousand, right? In this past month, my oldest kiddo, Arlo, who has multiple disabilities, including Down's syndrome, got really, really sick and when he gets sick, it's it's real, right?

01:03:06:12 - 01:03:34:08 Erin Croyle A cold can knock him out and put him in the hospital. And funny enough, while I was giving that, workshop on self-care was when he walked into my office and started coughing and literally interrupted and I heard the cough and I said, for example, I'm probably going to have to manage his stuff. And sure enough, the next day I was on the phone with pulmonology, and since then I've had to rearrange a sleep study, and he was out of school.

01:03:34:08 - 01:03:51:11 Erin Croyle And the steroids and other medicines he's on has has just kind of put him out of whack. And I've had to help with his anxiety getting him back to school. And the other two kiddos were really, really sick. But at different times. So then they were off school. And so of course I was sick. But that doesn't matter.

01:03:51:11 - 01:04:33:03 Erin Croyle You know, we power through as parents when we're sick. It doesn't matter. So I was coughing up a storm and managing and that's what we do. But when it came time again to edit this interview and I was like, how am I going to do it? Instead of staying up and pulling all nighters like, you know what? I'm going to give that the time it deserves, and I'm going to practice what I preach, and I'm just going to go ahead and try to riff through a podcast on my own and do this presentation one, to remind myself why things that seem to be doable are so impossible, and why deadlines that we set for ourselves.

01:04:33:05 - 01:05:05:12 Erin Croyle We have to give ourselves so much grace. And also why, even though I a lot for ample time to get all the things I need to get done, done. Rarely do I ever get anything done. And it's not for lack of trying and it's not for not constantly working. I don't rest, I don't practice self-care enough. But what I have preached and what I recognize is that my form of self-care this month was saying, you know what?

01:05:05:14 - 01:05:30:07 Erin Croyle My April podcast is going to come out in early May, and hopefully I will edit my Patrice interview for my May podcast and get it out in May. And let me talk about why, because that validation and the relation and understanding that we're not alone in this and pretending that everything's fine and it's not, it is hard and it seems like the hard never ends.

01:05:30:07 - 01:05:52:22 Erin Croyle And I don't know if that's middle age or parenting or caregiving or the world we live in, but hey. So without further ado, I'm going to go ahead and roll into my workshop on Self-care for caregivers, which I probably should have titled Self-care is a joke that We Need to Take Seriously. As I said in my intro, I'm Erin Croyle.

01:05:52:22 - 01:06:14:20 Erin Croyle I'm from Ohio. I am a journalist, a writer, a speaker, a podcaster. I'm a parent, I'm a caregiver, and I'm an advocate for disability rights and just human rights. In the show notes, I'll probably put the slide presentation in there, but you're listening to this, so I'm going to kind of present based on slides, just, just take a listen and sort of picture this, okay?

01:06:14:20 - 01:06:29:01 Erin Croyle And reflect on these words that I'll say very slowly. Be honest. What is your gut reaction to the term self-care?

01:06:29:03 - 01:06:58:01 Erin Croyle Now take a moment to really think about it. Because for me, I really do roll my eyes. We all know that it's important, but for many of us it feels or truly is unattainable. And in my opinion, the term itself is totally overused. And that's because the term self-care has been hijacked and commercialized by influencers, and the whole wellness industry.

01:06:58:03 - 01:07:26:23 Erin Croyle So take a minute to think what self-care truly is. According to the World Health Organization. Self-care is the ability of individuals, families, and communities to promote health, prevent disease, maintain health, and cope with illness and disability with or without the support of a health worker. It has origins in the medical community. It has long been encouraged for professionals involved in trauma.

01:07:26:23 - 01:08:04:20 Erin Croyle So you think first responders, doctors, therapists, people really on the frontlines of the toughest stuff that we're dealing with. It has roots in the civil rights movement and the women's rights movement, and it is critical for people with disabilities and their caregivers. Poet, writer, mother, activist the late Audre Lorde said, overextending myself is not stretching myself. I had to accept how difficult it is to monitor the difference necessary for me as cutting down on sugar crucial.

01:08:04:22 - 01:08:33:01 Erin Croyle Physically, psychically caring for myself is not self-indulgence, it is self-preservation. For those of us living as both parents and caregivers, the old adage that life is a marathon and not a sprint doesn't apply. Our lives are both a marathon and a sprint with no built in water breaks. That's why we really have to look to taking those breaks.

01:08:33:03 - 01:09:02:01 Erin Croyle They say that comparison is the thief of joy. But for us, comparing our lives to parents of neurotypical, non-disabled kids is a form of truth that can set you free. Like it or not, our lives are vastly different. My brother has two children who are similar ages to my three children. His boys are 15 and 12. Throughout our entire existence as parents, it's been really eye opening.

01:09:02:03 - 01:09:25:15 Erin Croyle Like I have always kind of looked in compared. And in the early years it was kind of hard because it hurt, because I was still accepting and grieving that Arlo's life would never be the life that you envision as a parent. When you have a kid, because most parents don't envision becoming parents to a child with a disability that will need lifelong support.

01:09:25:17 - 01:09:45:11 Erin Croyle You just don't. It's not in it's not in most movies. It's not in the fairy tales. It's just not. It's not what you imagine. And so those early years, I was able to look and just kind of see those developmental differences. That kind of stung. I was able to observe how much work it took just to help my son walk, as opposed to his kids just doing it.

01:09:45:13 - 01:10:17:20 Erin Croyle And sometimes, I don't know, I felt a certain kind of way. Never jealous, but just melancholy sometimes. And then I had another kiddo who was a similar age to his second kiddo. And Amelia's is now 12. And so I saw like, oh, I recognize that if you have a neurotypical typically develop meaning, right? I use quotes with those because those terms aren't great, but what other way are you going to say it?

01:10:17:22 - 01:10:41:00 Erin Croyle Do you have a non-disabled kiddo? Those milestones come naturally. There's no early intervention. There's no physical therapist showing you how to help your child move a certain way. There's no speech therapist helping with feeding and building muscle strength. Your kids just do it. And I still remember a meal starting to walk at nine months. And I was just like, wow, that just happens.

01:10:41:02 - 01:11:03:19 Erin Croyle So it got easier. But then there's little moments all throughout where I see the differences. And so now, my brother's oldest is starting to drive, and that's something I don't think I will ever do. Even when we do go cart riding, Arlo likes to, have me drive and we get a little tandem seat. And I'm so lucky that we have that nearby where we live, because it's really cool.

01:11:03:19 - 01:11:32:02 Erin Croyle And the person that runs the place is amazing. I highly recommend finding amazing people who understand how huge little things like that are, but there's things that we just take on naturally as caregivers that are normal, that my brother or, you know, people who have non-disabled, neurotypical kids just cannot fathom. So the little things like, okay, they have the anxiety of teaching their oldest to drive.

01:11:32:04 - 01:11:54:22 Erin Croyle But then when he's able to drive, he's alleviating some of the stress from my brother and and his wife where my nephew's going to drive, places, he'll be able to pick up his his younger brother, my other nephew, and their lives will get easier. And just just seeing them when we hang out together, the things that his kids are able to do independently, that don't come naturally to mine.

01:11:54:22 - 01:12:28:15 Erin Croyle Because, you know, not only does Arlo have significant support needs, but there's no divergence throughout my family. And so things that really I'm still trying to understand that come along with ADHD and neurodiversity and the whole spectrum of that. Certain rules work for them. And so it's a really, really different experience. That's where I think, considering an average day of a quote unquote typical parent compared to the average day of a primary caregiver is really important.

01:12:28:17 - 01:12:53:22 Erin Croyle Think about the day of a typical parent, and you got to consider the differences of ages. You know, toddlers are very different than grade schoolers. And teenagers are going to need nudged out of bed no matter what. But you know, the typical day average, right? Wake up breakfast, head out to work or school or daycare, extracurriculars, dinner. Chill out.

01:12:53:22 - 01:13:19:02 Erin Croyle You know, maybe go to bed. So the add ons for families without that extra stuff might be an annual well visit, the dentist appointment, occasional sick visits, things like that. Right? Consider an average day of a parent who's also a primary caregiver. You know you're waking up, but you've probably also been woken up throughout the night. You have to help dress and feed your children.

01:13:19:05 - 01:13:43:10 Erin Croyle You're going to have to help with hygiene and brushing teeth. Sometimes there's toileting. You're helping with medications, and then there's work, school, daycare. Maybe there's early intervention or therapies that you're either taking them to or bringing people in the house. There's extracurriculars, but a lot of times that takes extra effort and extra paperwork and extra kind of collaboration with whoever the coach or teacher, whomever is.

01:13:43:12 - 01:14:15:13 Erin Croyle Then you've got dinner and feeding the children more hygiene assistance, medications, maybe nursing level of care, bedtime routine, and then you've got other add ons there. You've got appointments with specialists and IEP meetings and paperwork and Medicaid meetings and homework assistance and behavioral support and dietary needs. Emotional regulation, nursing level care. In some cases, the interruptions we face on a daily basis are real.

01:14:15:15 - 01:14:38:08 Erin Croyle We're so used to them, but they don't happen for a lot of other parents. We don't have the same amount of hours in our day yet. We try to function and in many cases are expected to function and keep up as if we do. And let's not forget the financial hit that so many of us take as caregivers.

01:14:38:10 - 01:14:58:21 Erin Croyle Sometimes we can't work because even if our kiddos in school, it's still kind of a full time job. I mean, I think about how many calls I get about my children needing assistance at school. I've got to be ready to be interrupted multiple times a day. It doesn't happen every day, but there are flare ups throughout the school year where it might.

01:14:58:23 - 01:15:27:14 Erin Croyle So having a flexible job or taking on part time or flexible work, a lot of times our earning potential takes a hit and that puts us on a lower earning trajectory for life. Even those of us who do work, and work full time. We're either doubling up when we get home, burning the midnight oil for house stuff and other stuff, or we're spending a whole lot of money on the other things, like cleaning services and lawn care and whatnot.

01:15:27:16 - 01:16:01:24 Erin Croyle Or take away because we don't have time to cook dinner. It all adds up and it all creates these really different life experiences. Others don't realize how different our lives are. One of the biggest obstacles to self-care for caregivers are the expectations put upon us by those around us, or just ourselves. Take an inventory of your life and recognize what is doable and what's truly unrealistic.

01:16:02:01 - 01:16:32:24 Erin Croyle A really good analogy. An equation I like to think of frequently. And I want to thank the Washington Post advice columnist Carolyn Hax. I think it might have been a reader I saw this years ago in one of her columns, when I had time to read it. Happiness equals reality minus expectations. Stop expecting so much of yourself and just live in the reality you're in and recognize it.

01:16:33:01 - 01:16:58:11 Erin Croyle Another thing that really has helped me, because I am so hard on myself, is really looking at why I can't get it done. What I like to use is, if you've seen the movie or read the book, and with my own neurodivergent, it's it's hard to read a book. So I'm going to net. I've only seen the movie about a boy with Hugh Grant, which, by the way, Hugh Grant told A resurgence in my House, heretic was such a good film.

01:16:58:11 - 01:17:30:24 Erin Croyle Me and my 12 year old loved it. So seeing the evolution of Hugh Grant as an actor is has really been kind of fun. And so that's just a fun side tangent, but the movie about a boy came out, I don't, I think in maybe in the early aughts. Right. The 2000 maybe. I'm not sure. And in the film version, Hugh Grant is a wealthy bachelor living off the royalties of his dad's famous song, and he waxes on in this pretty funny sequence about how he breaks his daunting day into units and his units.

01:17:30:24 - 01:17:59:20 Erin Croyle Each unit is 30 minutes in it, he said. Taking a bath, one unit watching a TV show, one unit web based research, two units exercising, three units carefully disheveled hair at a salon, four units. And that really resonates with me because I sometimes think about when my son will refuse to go into school or refuse to get out of the car.

01:17:59:22 - 01:18:20:13 Erin Croyle It doesn't seem like it takes a lot out of my day, but sometimes that's an entire unit, or between the amount of time it takes for me to reregulate myself. It's it's 30 minutes one unit or the other day, my my daughter Maya, who's ten, forgot their, trombone, even though we have calendar reminders and I forgot it to.

01:18:20:15 - 01:18:39:12 Erin Croyle And so I walked them to school and came home and was like, oops. I got to get that right back there. Well, there goes a unit, right? Another unit. Just by getting in the car, getting the trombone, taking the school, dropping it off, saying hi, explaining what happened. Getting back in the car, getting home and re re setting myself.

01:18:39:14 - 01:19:02:22 Erin Croyle There's a whole unit gone just because someone forgot a trombone. And maybe it doesn't seem like a lot like, no big deal. It happens all the time. You got to let it go. But when we break our day into units and think about it in that way, it really sheds light on why we can't get it done. And so this will be in the show notes.

01:19:02:22 - 01:19:30:15 Erin Croyle But to just try to visualize if a unit is 30 minutes and a day is 24 hours, that's 48 units. Let's go ahead and break this down okay. Let's be generous and say that you get seven hours of sleep or attempting to sleep, like attempting to sleep. I know that we all burn the midnight oil or have kiddos that might need care throughout the night, but let's just say seven hours, which is not enough, by the way.

01:19:30:18 - 01:20:00:23 Erin Croyle Let's be real. But it's it's realistic. That's 14 units. That leaves us with 34 units. Okay. If we are going to look at personal hygiene for just ourselves in toileting, say that's one unit throughout the day. If we have enough time to actually take a shower and get dressed and maybe like, comb our hair a little bit, let's say that's another unit, meal prep, let's go a little bit skimpy there and figure 30 minutes per meal, not including snacks.

01:20:00:23 - 01:20:21:22 Erin Croyle But if you kind of tack that in, that's three units total of meal prep, right. If we're lucky enough to sit down and eat three meals in a day, hopefully that's a, you know, another three units, maybe meal cleanup if you're cooking and getting stuff ready, that is two units easily. I my gosh, it never ends right. Basic chores.

01:20:22:03 - 01:20:49:02 Erin Croyle That is average of two units a day. I would say that's 30 minute units, chores, two units an hour a day, and again, think about the average laundry, cleaning up, picking up, yard work, just basics. It adds up basic correspondence. So texting, emails, phone calls. That's about an hour a day for most of us. And that's just for typical folks.

01:20:49:04 - 01:21:15:16 Erin Croyle Now when you tack on parenting and caregiving duties, you're helping with your child's hygiene, which can range from total care to more general support. Here's the thing, though even with quote unquote typical children, this takes reminders and prodding well into their teen years. If you, disability and or neurodiversity into the mix, you might be trying visual schedules or augmentative communication or whatever.

01:21:15:18 - 01:21:42:15 Erin Croyle So hygiene support, that's easily two units toileting. Let's say that's one unit. And we all know that can be so different depending on family and age of the children and all of that, which is why I have four units for behavioral supports. This is a generic category for caregivers that encompasses so much four units is the equivalent of two hours a day, and that's the average.

01:21:42:17 - 01:22:06:15 Erin Croyle Think about things that might be tougher in your family that others would probably be clueless about. In my household, transitions are really tough for my oldest, most days, even getting him to go to activities he enjoys requires a gentle full court press filled with humor and patience. Any time I think about leaving the house with him, I build an ample extra time.

01:22:06:21 - 01:22:30:23 Erin Croyle We're talking about 30 minutes at least, not counting loading the car and taking care of all of the things those 30 minutes just to ease him into it, to get him out the door, and includes building things like a support circle full of folks who really get it, like finding a stylist who's kind and understanding and willing to adjust their schedule if Arlo just isn't having it.

01:22:31:00 - 01:22:58:15 Erin Croyle This stuff is hard, y'all. It is. Pull your hair out. Frustrating when your kiddos refuse to do things. Surrounding yourself with people who can laugh and cry with you through it, who either get it because they're in it to in their own way, or just truly know how to practice empathy. It makes all of this more doable, but it also takes time to build that which is part of the four units of behavioral support.

01:22:58:17 - 01:23:24:15 Erin Croyle Now, with my youngest assistance with homework or really any on preferred activity takes a huge effort. The challenges that come with neurodiversity are for real, and they come with their own set of unique skills that you need to develop. And in many ways, it's harder for folks to see it and realize it. Because kiddos who are neurodiverse, they present as typical, but they don't.

01:23:24:19 - 01:23:46:17 Erin Croyle They don't function that way. They need a lot of understanding and patience and time and kindness and firmness. And honestly, it's a mix I just truly don't fully get yet. And I'm working on it and it's hard now. Another example is my middle guy, who's 12, and I'm lucky enough that he still enjoys hanging out with me for the most part.

01:23:46:19 - 01:24:18:11 Erin Croyle And we love shooting the breeze about Minecraft or baseball, or just watching movies together, making sure that each of my children get the attention and affection they need in their own specific way. As much as I love doing it, it's work. It's the greatest job I've ever had, don't get me wrong. But when children have complex needs, which can range from disabilities that require anything from, again, total care to high support needs to neurodiversity, to anxiety or mental health challenges.

01:24:18:13 - 01:24:57:07 Erin Croyle It requires parents to tap into skills that many of us are not equipped with, nor do we have a community that can show us. And that's why talking about this stuff is so important. We need to be honest and real about the challenges we face. When you're supporting a child or children who are living in a world that's not designed for them, or they're functioning in spaces that are filled with people unwilling to consider or accommodate their needs, it can be a lot, and it takes a lot of time to break down those barriers and give these kids what they need.

01:24:57:09 - 01:25:26:17 Erin Croyle And when we're spending that time with our children in meaningful ways, trying to fulfill their developmental and emotional needs, other things go on the backburner, like self-care, even little things like bringing a forgotten instrument to school that can end up taking an entire extra unit when all is said and done. And for me, and I'm sure others, those small but frequent interruptions wreak havoc on my day.

01:25:26:19 - 01:26:08:11 Erin Croyle And that's partly due to my own neurodiversity. If I get sidetracked, it's really hard to get back on task and I get sidetracked all the time. So yeah, behavioral supports it is a lot. Caregiver correspondence is another thing that averages for units. Think IEP meetings and the preparation that comes with it. That includes 5 or 4 meetings, doctors, specialists, messaging on my chart, chasing down lab reports, filling out the piles of paperwork required for everything from waiver services or just participating.

01:26:08:13 - 01:26:40:09 Erin Croyle It's all that regular stuff, plus so much more, because the world's just not accustomed to helping people who have additional needs. It's the caregiver stuff. I don't know about you, but I can easily spend a full workday each week managing medical bills, insurance, paperwork, emailing people from school care team, whatever, etc. etc. etc. and then I can do it again the next week and the next week.

01:26:40:11 - 01:27:12:17 Erin Croyle It is so much. There's no time for us to even line up the support we need to free up time. The decks are stacked against us here. It's like treading water to keep from drowning, and the metaphorical life preservers thrown at us are impossible to reach because we're too busy getting through everything else. Those life preservers are just a few inches away, and just when we think we can reach it and and line up the support we need, we have to swim in the opposite direction to handle something else.

01:27:12:19 - 01:27:46:20 Erin Croyle It is relentless, and we need to understand that and honor that and recognize that. Because it's not going away. Medical needs moving on. I put one unit, but for many of us, we all know it's way more than that. And finally, two units for transportation, extracurriculars and those, you know, basic transitions. This is that soccer mom territory that easily averages an hour a day.

01:27:46:22 - 01:28:00:15 Erin Croyle Now, if you total all of these units up, it's 42 units. That's 42 units out of 48.

01:28:00:17 - 01:28:38:08 Erin Croyle That means we have six units left in a 24 hour cycle. That's three hours out of 24. That's free. That's all. And this only accounts for family and caregiver duties. This isn't really taking into account our jobs or all the other things that we're managing. And so if we're trying to be the caregiver that our children need, we only have three hours left most days.

01:28:38:10 - 01:29:04:14 Erin Croyle That's the reason we can never get it done. It's impossible. It is literally impossible to get it all done. So what are we supposed to do? Legit? Let's scoff at the idea of self-care, because we can barely get through the day. And folks, instead of seeing this, they just say, take time for ourselves. You need to take time for ourselves.

01:29:04:20 - 01:29:36:15 Erin Croyle How are we supposed to take time for ourselves when there is no time? And this is what I'm learning. My son is going to be 15 this year, so it's taken a while and I'm still learning how to practice what I preach. First off, say no. We need to start saying no. We cannot do the impossible. So let's stop pretending that we can keep up and do all of the things that our parenting peers who also aren't caregivers can do.

01:29:36:17 - 01:30:05:17 Erin Croyle Skip the PTA meeting. Don't sell the Girl Scout cookies. Don't coach the team. Say no. If it's Teacher Appreciation Week. You know what? Shoot off an email saying how important these teachers are and call it a day. Let the teachers know how much you appreciate them in your own way. That honors yourself. And that's the next thing. Honor yourself, okay?

01:30:05:19 - 01:30:32:06 Erin Croyle Acknowledge the hardships. We don't have to explain ourselves, but once in a while I think that we should. If other people have no idea what it's like to live as an unpaid caregiver to a child with high support needs, how will they ever know that we're drowning? It's a really weird place because I hate doing this and I don't want to complain about my life.

01:30:32:08 - 01:31:04:14 Erin Croyle But if we don't make it clear that we need more help and empathy and understand, other people won't know if we pretend everything is hunky dory, everyone's going to think everything's hunky dory. Think of ways that let people in while honoring and respecting your child's autonomy. So the way I like to do this is I will frequently remind folks that my child is not, and never has been a burden and never will be a burden.

01:31:04:16 - 01:31:29:11 Erin Croyle The burden are the societal constructs that make it so hard to be in spaces when you have a disability, because of the lack of accessibility and understanding. And so in part of this whole practice, what I preach thing, I have started even trying to do this more. I have always stressed that disability isn't a bad thing. It's a natural part of the human condition.

01:31:29:13 - 01:31:50:17 Erin Croyle I talk about disability openly whenever is necessary, but lately I've been realizing that maybe I need to take it to the next level. Because if I miss a meeting, maybe folks need to know it's not just because I'm mom, right? Especially as women. People are like, oh, she's a mom. So, you know, I get that it's hard being a mom.

01:31:50:19 - 01:32:21:02 Erin Croyle No, it is hard being an unpaid caregiver in a world that doesn't really give, you know, what about people with disabilities? Let's be honest. It's true. And like I said, it, accessing the services that are available is a full time job in and of itself. Even though no one needs to know why I'm going to miss a meeting if it's something outside of the realm of my job.

01:32:21:04 - 01:32:52:06 Erin Croyle So for a good example, and I don't like to talk about this often, but I serve on my local school board and it's an honor. And I love the work. But my son has been through some stuff, and there's been some really heavy medical components to his disability that have that have been devastating. And that, force me to face his mortality and I've had to deal with some heavy stuff.

01:32:52:08 - 01:33:16:12 Erin Croyle And I think a lot of us do have to deal with heavy stuff personally. And because we know that it's no one's business, we don't say anything. But explaining that. Medically complex and medically fragile people. When you care for them.

01:33:16:14 - 01:33:49:03 Erin Croyle It's hard to think of how to explain to someone what it's like to walk through this world thinking that you're going to lose your child in a few months or a few years. And I think that people can relate to that idea. And if you don't tell them that, that's something that is a tightrope that you walk from time to time as you figure out what the next medical anomaly is.

01:33:49:05 - 01:34:04:24 Erin Croyle You're walking around and your soul is being crushed simultaneously, and you're expected to function in a way that is normal and you can't.

01:34:05:01 - 01:34:31:19 Erin Croyle It's tough because you don't want to have to talk about it because of how painful it is, and because you're putting yourself out there and you're incredibly vulnerable. And in some spaces, you're carrying this weight of the world on your shoulders while also having to maintain composure, trying to figure out ways to share that, I think is important.

01:34:31:21 - 01:35:08:10 Erin Croyle Being a little more real about how challenging certain aspects of our life are, while maintaining that fine line of. Privacy. It's really hard. And it's also something that is very necessary. And I'm still dealing with how to figure that out and respect my son, but also let people know that they need to respect the fact that if I'm not fully present, it's for a darn good reason.

01:35:08:10 - 01:35:31:03 Erin Croyle Right? And I think that I think that a lot of times people see a caregiver and they just equate it to a stay at home mom or a stay at home dad or whoever, and they don't realize that we are dealing with some stuff, that it's truly unimaginable what we're carrying with us every day. And it's it's our normal.

01:35:31:05 - 01:36:04:04 Erin Croyle We live in this completely different level of anxiety that other people, I don't think can fathom. And I think we need to start figuring out how to share that, because then maybe people will have a little more space and understanding and be allies in our advocacy. Guy that just got really heavy. I, I'm going to transition here and also say that we need to also honor our self by not listening to other people.

01:36:04:06 - 01:36:36:07 Erin Croyle This means you have to recognize what self-care is for you. A good example that I have really figured out through therapy and, and, and understanding my neurodiversity, is that folks like to say to me to let it go, oh, don't worry, it's just a messy house. Or let this go. That is not possible for me. It causes actual pain for me to live in chaos, and some order is necessary for my children because of their neurodiversity.

01:36:36:12 - 01:37:06:11 Erin Croyle So self-care for me is making sure my house is clean. It is putting away my kids laundry for them because they need some order in their own rooms. It's figuring out what works for you and what works for your family unit. So think about your needs to feel physically and mentally stable even. And I think it's important to recognize what true self-care is.

01:37:06:13 - 01:37:41:20 Erin Croyle Like I mentioned earlier, it is not going to get a manicure or going get a massage. In its purest form. It's taking care of yourself. We're so busy taking care of our loved ones that will miss a mammogram or skip a well visit, but those things are essential. That stuff is self-care. So is taking a shower. So is eating something, or drinking enough water, or getting exercise, or talking to a friend.

01:37:41:22 - 01:38:10:05 Erin Croyle Those pure forms of self-care are essential. Another thing we need to do for ourselves is to just take 5 or 10 when our days are jam packed, you got to think about ways that you can fit self-care into it naturally. So I find myself doing squats while I'm in a waiting room. Or if I'm waiting at pick up, I do push ups on a bench on a playground.

01:38:10:07 - 01:38:36:20 Erin Croyle I keep nail clippers and floss in my car, along with hand sanitizer and hand wipes. Because, yo, sometimes just flossing isn't possible, but it's necessary. Just walk around the block. If you can answer an email on your phone while you're in a waiting room or wherever you can fit it in, pay your bills online. If you're in a meeting where you don't need to pay 100% attention, just get those little things done.

01:38:36:22 - 01:39:06:05 Erin Croyle Take 5 or 10 minutes to just do them. I wear workout clothes almost everywhere I go. I wear tennis shoes everywhere I go. I have to do that partially because of my son's allotment of shoes. It became a habit. But then I realized that my comfort is more important. You have to do. You make your life functional in a way that you can figure out how to fit self-care in, instead of doing everything for others.

01:39:06:07 - 01:39:29:17 Erin Croyle Yes, we don't have enough hours in the day, but what little tweaks can you make where you can pick a few minutes to do things you need? Because our physical fitness, it's not about what we look like. We know we have to take care of our loved ones. We don't get to become frail. We have to maintain our strength because we have to care for someone, and we likely will into our old age.

01:39:29:19 - 01:39:53:20 Erin Croyle What can we do so we can live long enough to support our kiddos and feel good in our bodies doing so. It's also about embracing moments of joy. This stuff is hard. Joy and happiness. It's not a constant for anybody. Those fleeting moments of joy, man, just grab on to them. When my kiddos hug me, I soak it in.

01:39:53:22 - 01:40:11:01 Erin Croyle I can't tell you how many meetings I'm late for because my kiddos want one more hug, and there's no way I'm going to say no to that. They're 14, 12, and ten. Those aren't going to have a much longer if they ask for a hug. I'm going to be five minutes late. I'm going to go get that hug.

01:40:11:03 - 01:40:37:09 Erin Croyle If they're dancing, I dance with them sometimes, man, I got to put earplugs in and dance with them because it gets loud in my house. But the joy and smiles on their faces are everything and it lifts me up. If a friend wants to go on a walk and maybe gossip or whatever, I do whatever I can to push off other stuff because I don't get much adult interaction.

01:40:37:11 - 01:41:07:00 Erin Croyle I could use some catty banter or hear about whatever TV show other people are able to watch that maybe I can start watching. We need it. We need to think about other things other than these daily struggles we're living in and indulging in brain candy. I know friends that watch Real Housewives and, as much of a news junkie as I am, I turn off the news and I find watching shows like Ted Lasso to be its own form of therapy.

01:41:07:02 - 01:41:33:18 Erin Croyle Lately, we've been watching Parks and Rec, and it's just really joyful and sometimes funny and silly, but also almost always uplifting and and hopeful. And I need that because the rest of the world doesn't feel that way. I know I said that it was important to recognize what true self-care is, but also buy the darn latte. Just get the mammogram first, right?

01:41:33:20 - 01:42:01:03 Erin Croyle If you can swing it, get a massage, get a manicure, get a pedicure. Even better, hire a cleaning service. Do whatever you can to make your life easier. Most importantly, we have to give ourselves grace. We only get one chance at this life of ours, right? If you miss a deadline or have to cancel a meeting, let it go.

01:42:01:05 - 01:42:26:11 Erin Croyle I remember early in my career I was so focused on getting ahead and climbing the ladder. I struggle with whether I should take time off. I almost missed my brother's wedding because I didn't want to miss the launch of the National Geographic Channel. My dad would always say, when you look back on life, what do you think would matter more that you had perfect attendance, or that you got to spend a weekend with your family?

01:42:26:13 - 01:42:45:19 Erin Croyle And he's right. My dad was the guy who, when I was, I was such an overachiever my whole life. Right. So in high school, I didn't want to do senior skip day. And he was like, Erin, come on. And he took me and a friend to some Amish restaurant because I grew up in Northeast Ohio and it was still is Amish country, right?

01:42:45:19 - 01:43:07:07 Erin Croyle So I was Mary Yoder's or something, literally. That was the name of the place. And I still remember that and look on that so fondly, because not only did I get a chance to go to breakfast with my dad, I got taught one of the most important life lessons. I remember spending that time with my dad and he's not here anymore.

01:43:07:09 - 01:43:36:09 Erin Croyle I don't regret missing school. Have you have you ever regretted missing a meeting right now? I might regret missing a, meeting that I had a month ago. But when we shift and look at stuff through a five year lens or even a one year lens, it's typically not meetings or work events that we regret missing. It's that band concert that my son had that I missed.

01:43:36:11 - 01:44:07:13 Erin Croyle It's spending time with people that I love that aren't here anymore, when our days are nonstop and our lives are nonstop, and those moments of making a decision of what needs to come first and what we need to prioritize, try to take a step back and use that lens of what your future self would want to see you do, and use that to guide you.

01:44:07:15 - 01:44:39:03 Erin Croyle Cokie Roberts, journalist who I interned under actually back way back in the day. Right. I was at this week with Sam Donaldson and Cokie Roberts. She said to remember that your parents are only old ones, and your children are only young once. Think about all the little things that matter. Give yourself grace. And breathe.

01:44:39:05 - 01:44:58:17 Erin Croyle Thanks for listening. Be sure to share, review, subscribe, like, follow or whatever it is you need. So you get a ping when the next episode drops. This is the Odyssey Parenting. Caregiving. Disability. I'm Erin Croyle. We'll talk soon.

A glass of wine or tasty cocktail at the end of a hard day is alluring for sure. But when nearly every day is hard, it might be time to rethink that drink.

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.

SHOW NOTES:

Parenting Special Needs Magazine

Simplified self-care

There is limited research on the connection between caregiving and problem drinking.

There is some recognition that caregiver burden can cause anxiety, depression, social isolation, and stress which are predictors of increased alcohol use.

The slope to addiction is a slippery one. "It's 5 o'clock somewhere" loses its charm when it becomes an excuse instead of a rare occasion. But it's easy to miss the signs when you're having fun on the slide.

I speak from experience. I remember the warm, fuzzy calm that came over me when I had my very first drink many moons ago. It's a feeling I chased over and over again at countless venues - dorms, dates, happy hours, concerts, weddings, funerals, brunches, lunches, dinners, suppers, baby showers, and eventually play dates.

Information on how ADHD impacts substance use.

2023 survey of 1600 mothers by Parents found that 48% had tried to curb their drinking, one in three admitted they might be drinking too much, and 12% were worried they might have a dependency problem.

Most folks pour way more than a standard serving when imbibing.

In early 2025, the current U.S. Surgeon General Dr. Vivek Murthy urged warning labels be updated to include a heightened risk of at least seven different types of cancers including breast, throat, and colon.

According to his report, even consuming just one drink per week increases cancer risk by 10% in men and 16% in women.

WHY ALCOHOL IS SO RISKY FOR CAREGIVERS

For those of us navigating this often isolating and relentless life of caregiving, alcohol often serves as a welcome distraction from what we really need - respite, support, empathy, space, to be seen. It muddies our crystal clear view of the injustice our children face, offering relief from a sometimes brutal reality.

The immediate impact of alcohol use can lead to anxiety, irritability, agitation, lethargy, depression, impairment, poor judgement, and a whole host of other things that can make caregiving more difficult. If you are unable to recognize that alcohol use is exacerbating what ails you; a cycle is established - drinking to ease what ails you, in turn causing more ailment which leads to more drinking which can lead to problem drinking and eventually, potentially dependence.

There are many self-assessment tools available online, you just need to be brutally honest with yourself when taking them.

As difficult as cutting back can be, finding help is easier than ever.

TRANSCRIPT:

01:00:06:21 - 01:00:38:09

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. I was lucky enough to head down this less traveled road when my first child was born with Down's Syndrome in 2010. Now I work for the Center for Family Involvement at VCU's, Partnership for People with Disabilities.

01:00:38:11 - 01:01:19:00

Erin Croyle

This podcast explores the triumphs and hardships we face. We celebrate the joys that the odyssey of parenting, caregiving and disability bring. But there's no sugarcoating the tough stuff. I'm all about keeping it real, so I'm just going to come out and say. I've been recovering from surgery. So while I have some amazing interviews coming your way, this episode, I'm going to share a somewhat personal article I wrote for Parenting Special Needs Magazine about one of the hardest yet best things I've ever done for myself.

01:01:19:02 - 01:01:53:10

Erin Croyle

The allure of sipping on an adult beverage at the end of a hard day is real and for good reason. A glass of wine or a stiff drink are long romanticized ways to chill and unwind. A sort of easy pass into the fast lane of relaxation. But what happens when nearly every day is hard? Kind of like the unending mental and physical labor that comes with being both a parent and a primary caregiver for your child.

01:01:53:12 - 01:02:27:08

Erin Croyle

Reaching for a bottle of booze may seem like simplified self-care when your days are often both incredibly demanding. Yet super mundane. While there's virtually no research on the connection between caregiving and problem drinking, there is recognition that caregiver burden can cause anxiety, depression, social isolation and stress, which are all predictors of increased alcohol use. The slope to addiction is a slippery one.

01:02:27:10 - 01:03:14:02

Erin Croyle

It's 5 o'clock somewhere, loses its charm when it becomes an excuse instead of a rare occasion. But it's easy to miss the signs when you're having fun on that slide. I speak from experience. I remember so well the warm, fuzzy calm that came over me when I had my very first drink many moons ago. It's a feeling I've chased over and over again at countless venues, dorm rooms, dates, happy hours, concerts, weddings, funerals, brunches, lunches, dinners, suppers, baby showers, and eventually playdates.

01:03:14:04 - 01:03:42:10

Erin Croyle

The way our culture normalizes alcohol use made it easy for me to enjoy a glass of wine or three while making dinner for my children. That is up until I quietly quit drinking when they were ages five, three and one. Mommy, happy hours at a playground are a thing. One that I partook in, enjoyed and instigated. I felt like I deserved it.

01:03:42:12 - 01:04:12:13

Erin Croyle

My oldest son has Down syndrome and has eloped since he could walk. I now know that all three of my children have ADHD and so do I. What felt like the only attainable self-care I could find at the time was actually me self-medicating with some really heavy dosing. Caregivers operate at a whole other level of intensity than peers who are simply just parents.

01:04:12:15 - 01:04:42:13

Erin Croyle

When there is literally no time in the day to just be taking the edge off with a drink can be dangerously appealing. In fact, a 2023 survey of 1600 mothers by Parents magazine found that 48% had tried to curb their drinking. One in three admitted they might be drinking too much and 12% were worried they might have a dependency problem.

01:04:42:15 - 01:05:19:07

Erin Croyle

Everything in moderation is not always the way sober curious movements abound these days, from theme months like dry January and sober October to expensive mocktails popping up in beverage sections at the grocery store. It's easier than ever to be a teetotaler. Staying sober, however, is a whole other story. Drinking is ingrained in our lifestyles. Mimosas at brunch, celebratory toasts at wherever.

01:05:19:09 - 01:05:49:13

Erin Croyle

Honorary toasts at wherever. When I first stopped drinking, the pressure to have just one came from virtually every adult around me. Nearly a decade later, and I still rehearsed responses as to why I'm abstaining. It's just assumed that everyone old enough to drink would drink. And if they're not drinking, they're expected to explain why. As if it's anyone's business.

01:05:49:15 - 01:06:19:11

Erin Croyle

The thing is, if moderation requires thought or effort, it might be time to examine your habits more closely. This idea that a glass of red wine with dinner every night is healthy is a complete fallacy on many fronts. First off, how much is in that drink of yours? A serving size of wine is five ounces. That is way smaller than most people's pores.

01:06:19:13 - 01:07:02:12

Erin Croyle

The same goes for most drinks, from beer to hard booze to malt liquor. And I'll have graphs and more info on that in the show notes. Another consideration is that many people who drink too much don't realize they're drinking in excess, and they certainly don't see themselves as dependent on alcohol. Furthermore, statistics on alcohol consumption are self-reported. If we were to factor in human error and perception, most people are probably both over serving themselves while simultaneously underreporting their consumption to medical professionals.

01:07:02:14 - 01:07:38:02

Erin Croyle

In fact, the CDC reports that nine out of ten excessive drinkers are not alcohol dependent. But how would they know that? What's the measurement there? If you're an excessive drinker, what makes you think that you're not dependent on alcohol? It is a very blurred line. And even if you're truly one of those people who can have a few sips and walk away, the old adage that alcohol in moderation is good for us is patently false.

01:07:38:04 - 01:08:16:20

Erin Croyle

For decades, we've been led to believe that a drink or two several days a week could help in preventing heart attacks and strokes. But in early 2025, the U.S. surgeon general at the time, Dr. Vivek Murthy, urged warning labels be updated to include a heightened risk of at least seven different cancers, including breast, throat and colon. According to his report, even consuming just one drink per week increases cancer risk by 10% in men and 16% in women.

01:08:16:22 - 01:09:01:05

Erin Croyle

Let me repeat that and remember what I just said earlier. We are overconsuming and underreporting. So in his report, he said even consuming just one drink per week, one five ounce glass of wine per week increases cancer risk by 10% in men and 16% in women. Why is alcohol so risky for caregivers? For those of us navigating this often isolating and relentless life of caregiving, alcohol often serves as a welcome distraction from what we really need.

01:09:01:07 - 01:09:46:09

Erin Croyle

Respite, support, empathy, space to be seen. It muddies our crystal clear view of the injustice our children face, offering relief from a sometimes brutal reality. Unfortunately, the solace that booze brings is temporary and toxic, often creating more problems. In addition to the long term cancer risk. The immediate impact of alcohol use can lead to anxiety, irritability, agitation, lethargy, depression, impairment, poor judgment, and a whole host of other things that can make caregiving more difficult.

01:09:46:11 - 01:10:25:16

Erin Croyle

And of course, if you're unable to recognize that alcohol use is exacerbating what ails you, a cycle is established drinking to ease what ails you in turn causing more ailment, which leads to more drinking, which can lead to problem drinking and eventually potentially dependence. So what's a caregiver to do? Given what we know about the dangers of alcohol use and the demands placed on lifelong caregivers, we owe it to ourselves and to our loved ones to take a closer look at our consumption.

01:10:25:18 - 01:11:01:18

Erin Croyle

There are many self-assessment tools available online, and I'll put a few in the show notes. You just need to be brutally honest with yourself when you take them. Most importantly, know that there is absolutely no shame in needing help. Alcohol is an addictive drug. Building tolerance and dependence is more common than we know because it's pretty much the only drug out there that is not only socially acceptable to use, but encouraged to use virtually everywhere we go.

01:11:01:20 - 01:11:30:23

Erin Croyle

That whole rock bottom, sloppy alcoholic image is just a caricature ized version of what problem drinking is. More realistic versions of problem drinkers are all around us. It could be you. It was me drinking alone. Drinking early in the day, thinking you should come back or moderate. These are all indications that it might be time to stop. As difficult as cutting back can be.

01:11:31:02 - 01:12:13:07

Erin Croyle

Finding help is easier than ever. Almost every kind of support out there is available in multiple formats. In-person person online apps on your phone. Anything from Alcoholics Anonymous to mindfulness to sober blogs, to sober challenges to therapies, to groups, to coaching, to books. Something is bound to resonate and help you figure out what works for you. And what I can tell you from personal experience is once you pull yourself out and you stop when you wake up in the morning, it feels amazing.

01:12:13:09 - 01:12:34:18

Erin Croyle

And every day that you wake up that you didn't drink the night before, it just feels more and more free and more and more awake and alive. And you just wonder why you didn't do it sooner.

01:12:34:20 - 01:12:58:22

Erin Croyle

Thank you, listeners, for joining us. Check out the show notes for those self-assessment tools for statistics info, How to find help and feel free to reach out to me about any questions you might have. I'm an open book and be sure to share a review. Subscribe like follow. Or whatever it is you need so you get a ping when our next show drops.

01:12:58:24 - 01:13:06:21

Erin Croyle

This is The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle. We'll talk soon.

When a child is sick or missing developmental milestones, we immediatly start searching for answers as to why.

But what happens when test after test just leads to more questions?

Rare diseases are more common than we realize; research surrounding them is what's lacking.

We're shedding light on what so many people go through by sharing the story of one family's diagnostic odyssey.

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.

SHOW NOTES:

The Center for Family Involvement offers specialized one to one support specific to rare diseases through our Genetic Navigator program.

Learn more about rare diseases and Rare Disease Day.

Smith-Kingsmore Syndrome Foundation

TRANSCRIPT:

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. It's a seismic shift I experienced myself, when my first child was born with Down syndrome in 2010.

Now I work with the Center for Family Involvement at VCU's Partnership for People with Disabilities.

This podcast explores the triumphs and the hardships we face.

One of the hardest things families go through is the diagnosis itself.

There are an estimated 300 million people with rare diseases worldwide. A disease is considered RARE when it affects fewer than 1 in 2,000 people.

Lack of scientific knowledge often leads to delayed diagnoses and inadequate treatment and care. All of this places a heavy social and financial burden on patients, and in turn their caregivers.

To highlight these issues and in honor of Rare Disease Day this February 28th, I dug deep into The Odyssey vault to revisit my interview with Sarah Lepore. Sarah has a Master of Science in Nursing and is a Board Certified Neonatal Nurse Practitioner. She is also one of the founders and the President of the Smith-Kingsmore Syndrome Foundation. Her now 13-year-old son Charlie is one of less than 300 people living with SKS. The story of their diagnostic odyssey is just one example of what so many families go through.

So welcome. I'm so excited to talk to you today. Sarah Lepore. We at the Center for Family Involvement, you know, our world revolves around parenting and caregiving and navigating that world and empowering folks to be able to do that as well as they can. And your story is so powerful because you have had to really pave the way. Can you just start us off, Sarah, and tell us a little bit about, I guess, your son, Charlie, and that journey?

Yes, thanks for having me, Erin. Um, so, you know, I, Charlie was my third pregnancy, and, um, I was a nurse at the time, so, you know, I felt pretty in tune with what, how the pregnancy should be going. And early on, um, our O B G Y N was concerned about Charlie's head growth. All of my kids had big heads, um, but Charlie's was a little larger than the others, and he was following that real closely. And, you know, he, when he was born, um, everything looked good besides his head being big, otherwise, he, you know, was a great normal baby. Happy baby fed well, slept well. Um, we didn't really have any concerns until about two months. Um, when, you know, you start to expect some of those infant milestones and they just weren't coming. He wasn't, um, reaching for toys. He wasn't really, um, lifting his head up.

He had severe head lag. Um, and so that's when I started reaching out to my pediatrician, um, and talking to her more about, you know, could this, could there be something wrong with Charlie? Um, you know, of course, like most pediatricians would to a mom at, uh, two to three months of age, they might say, let's just wait. So we did wait a little bit until about between six to eight months where, um, we did notice that he was just not hitting milestones and getting further and further behind his peers. Um, so with the help of our pediatrician, um, she was able to get us in at U V A, um, through the developmental, um, pediatrician group, which I feel really lucky that at that point in time we, you know, we only had about a, a three to six month wait. I can't remember the exact wait, but it was, you know, it's felt long, but I know right now the waits can be upwards of a year. Um, so, you know, we got in relatively early and started our journey and, um, you know, we started up with the developmental pediatrician.

Sarah, I'm gonna interrupt you actually really quickly because I think a lot of times people don't actually know. Can you explain what the difference is between a pediatrician and a developmental pediatrician?

Yeah, absolutely. So a developmental pediatrician, um, is just that they are, they follow, um, infants through adolescents through their development. So their, um, emotional development, their physical developments, um, and, uh, they support your pediatrician. Um, where the pediatrician, um, is more for well sick visits. Um, they, the pediatrician does look at your developmental milestones also, but they would refer out to a developmental pediatricians if there was concern for a baby or child not meeting milestones, um, at the, the time that the line that the American Academy of Pediatrics has published. Um, so your developmental, um, is kind of a gateway. I I consider them really in those beginning stages of, um, looking for a diagnosis, your gateway, um, doctor to help you, um, connect with other, um, specialists, other services, if your child needs to, um, see other services, especially if it's kind of this gray, like we're not meeting milestones, but, you know, we don't have anything else specific. Um, it's, it's different when you already have like some, some other symptom that's really clear. Like if you have seizures, you might go the route of a neurologist, but if you don't have any real specific symptoms other than milestones, going to the developmental pediatrician is usually the the first place you would be sent.

And I, I'm curious too, um, and again, I wanna get back to your story, but it's so hard to find a developmental pediatrician and because you're on this journey and because we're talking about this now, I mean, what do you recommend someone do if they can't find a developmental pediatrician? Or if the wait is indeed a year and you're just feeling really lost, um, what do you think the best route is to go?

Well, Erin, I think it really depends on the symptoms that your child is experiencing. Um, but you know, first and foremost, get on the wait list, get that appointment, and then, you know, seek out a community. And there's a lot of social media out there that can help us connect to a community of other parents who are going through the same thing. Families are just wanting to help each other. Um, so I think in the meantime, while you're waiting, it's really good to crowdsource connect with other parents who are experiencing some of the same similarities you're experiencing.

Yeah, and I have to say, I have to add, um, because I, I think our sons are my son's 12. And your son's also 11. 11, yeah. Um, and my son has Down syndrome and a lot of other, uh, stuff to go along with it. And not only do you get on those waiting lists, but I would highly recommend staying with those doctors and continuously seeing them annually or biannually, because even if it seems like you don't need that doctor something, especially when you have complex medical needs, something can pop up later and you don't wanna have to get back on the end of that waiting list.

That's a really good point. In fact, U v a if you, um, un established care if, if you're seeing developmental pediatricians at uva, if you stablish care, which is somewhere greater than a year because they expect a yearly visit, I think depending on your diagnosis, it may be three years. I'm not a hundred percent sure on that. But if you end up lapsing and and not going, then you have to start over and reestablished care and those wait lists are, uh, right now, I think eight months to 12 months long. So, um, definitely wanna continue to go and, and there's been times where we've gone and it's like, I don't really need to go, I don't, like there's not, I'm not really gonna gain anything from it. And so you walk this line, it's like, do I wanna put my child through another visit? But, um, you know, developmental pediatricians are usually, they're, you're gonna do a lot more talking and they're real engaging. I mean, our experience has been wonderful. We see, we've seen quite a few at U V A, um, our, our current one is Dr. Frazier, um, and she is really engaging with my son. Um, she, you know, really, um, connects with him. So it's, the appointments aren't, aren't, um, too traumatizing for him at all. Um, but keeping those up with those appointments are really important cuz they have been hugely impactful for me when it comes time for things like writing IEPs.

Absolutely. And I find too, if, if your child has a condition where certain things are common, so for instance, with Down Syndrome, it's common to have thyroid issues, even if your child doesn't have set issues at that time, perhaps seeing an endocrinologist annually, if those issues crop up, you can be on MyChart and message and do all the things you need to do if something hits the fan. Um, but now we're going on this huge tangent and I wanna get back to Charlie and your story. Thanks. So please start, start from where we left off.

All right. So we, we got in with our developmental pediatrician and he recommended, um, he offered, do we wanna go the route of genetic testing. Um, so it wasn't like, what, you know, you must do it, it was offered to families, which is really important. Genetic testing is something that families should be consented to. Um, it shouldn't, you know, some people don't wanna go that route and that's, you know, totally their choice. You know, I, as a, um, a nurse at this point, I was, um, I was still a nurse. I was in grad school getting, um, my master's, um, and I, um, really wanted to find out all the reasons why like I needed, I needed to know the answers. So we did go the route of the geneticists and we had our first appointment about four months later. Charlie had a microarray done, a chromosomal microarray.

And the first, um, test that result we got back from the chromosomal microarray showed that Charlie had a micro deletion of a gene called a U T S two or OTs two. Um, and that gene was, was recently, uh, discovered and there wasn't a lot written about it, but over the course of a couple of months, paper started popping up. And as I'm reading, um, about this, um, genetic syndrome, I'm finding that almost all of the cases RF kids with small heads or microcephaly and Charlie had macrocephaly or a large head knowing that that's kind of a major difference in development. I wanted to question, I questioned like, maybe this isn't the right diagnosis. So I did some research and I reached out to some of the, um, doctors and researchers that have written articles on OS two. I shared with them Charlie's genetic diagnosis, um, sheet from MyChart from, um, from our hospital.

And, um, you know, waited. I emailed and waited to see if I'd get any responses. And sure enough I had two, um, experts and s to respond back to me. And they said that they would recommend Charlie getting whole exome sequencing, that they did not feel that, um, s two really fit Charlie, um, and that we should continue to seek out a different diagnosis. Um, meanwhile, I, um, with another, um, parent, I'd started a Facebook group frauds too, because there was nothing out there. And again, I wanted to connect with people. Um, I had a lot of friends, uh, a couple of friends, not a lot of, couple of friends that had kids with Down syndrome and I had attended some of their, um, community events and the, like, it was just amazing to me to see this community come together. Um, and, you know, we always, we wanted to participate because of that feeling, but like, I still, you know, that wasn't Charlie's diagnosis.

So finding our people was really important to me. Um, and so we started this group, um, and, uh, that group has really grown and since, um, over the years I've kind of transferred the, um, leadership onto other families. Um, and we continued our, our, um, diagnostic odyssey to try to find, uh, the right diagnosis to fit Charlie. At the time, whole exm sequencing was not being offered. It was like in the beginning research stage, there were places across the country that were starting to do it. And you know, as I'm trying to figure out can we get this done, I'm hearing back from our team at UVA that they're not offering it yet, and then they're only offering it if insurance is covering it. And at that time, our insurance was not covering it. So again, I went out on to social media to try to see what I could do and just reaching out to other parents across the country on what their experience has been.

And I found out that, um, the lab, gene Dx was running these tests for, um, not free, but they were, um, at least trying to bill your insurance and then they were rebilling, um, and kind of running, like doing the fight for you so you didn't have to do all of that. And when it came down to it, by the time we finally got it done, our insurance, um, and Gene DX ended up covering it. So we didn't have any out-of-pocket at the time. It was a $28,000 test. Um, it's, it's much more affordable now, but it's still, it's not, um, free, um, to everybody. And, uh, and so, you know, accessibility, um, was a big issue for us and it took over a year and a half to get the right testing done for Charlie. But then we got the whole XM sequencing and it came back normal.

And so of course I was a little bit disappointed, you know, we went through all of this and we get this test that's normal. But when I say normal, what it had was a, uh, variant on the gene mTOR that was unknown, unknown significance. So what I was told is it's normal. You're gonna, there's always gonna be a gene of unknown significance with a variant that happens on everybody if normal. Okay. I ended up reaching out to, um, the same doctors that I had talked to, um, previously about OTs two syndrome, just to kind of pick their brain on everything. And at the exact same time that this was going on in the background, another Dr. Lori Smith, discovered a child who had a variant on mTOR, and she actually published a paper on it. Her and her colleague Dr. Kingsmore, they described in the literature a mutation of the gene mTOR that, um, caused some symptoms that were so similar to Charlie as this information is all kind of coming together.

Our geneticists at the time reached out and said, Hey, we're gonna ask the lab to rerun it, rerun your test. Which when Gene DX reruns your, your whole exome sequencing, they don't actually need another blood sample. They can just rerun it against their database. And when they rerun it against their database, we again got back variant of unknown significance. All right? So we've now had it done twice. There's this variant of unknown significance. There's this paper that's been written about Smith Kingsmore syndrome, we yet to find anything out about this. And I thought, okay, I, I kind of had closed the book. I was like, all right, Charlie's just unique. He's rare. I, I'm not sure what we're gonna do, but I'm just gonna move forward with what he needs, which is the therapies to help him meet the milestones that he's, that he's able to achieve. And to just get past that point of grieving the like why and what, and move forward with, okay, we have to have action to make things better. Um, so we kind of threw ourselves into therapy. We were already doing a bunch of therapy and just rolled with what, what we needed to do to, to really help Charlie be the best that he could be.

I'm gonna have you pause there because you mentioned the grieving, right? And you know so much here about all the things and, and so many families like ours, like, we have to go into this mode where it's research and advocacy and research and advocacy and fighting for this and insurance and paperwork, and it's a full-time job. So I wanna pause and I wanna know at this point, you know, you are going through all of these things and so how are you at this time and how is Charlie at this time? I mean, at this point where you are in the story, can you tell us how long the journey's been and how you're holding up? And I wanna know about motherhood in these conditions because I know for me, having my oldest have a disability and having two younger siblings, we are robbed of so many experiences being parents that it, it just sometimes feels unfair and there are a lot of emotions that I feel like we brush off. So I wanna know where you were at this time emotionally and where your family was and how you all got through this while you were doing all these things on top of being a mother, on top of being a professional. How were you?

Um, well, you know, it was, it was a difficult time for me for sure, and I was in therapy. Um, I, that was one of the things that I did for myself to kind of work through that grieving process of, um, you know, grieving what, um, what I expected out of the pregnancy, what I expected out of my newborn, a period. And that, that really helped me. And I, I worked through, um, with my therapist, I worked through, um, that grieving process. Um, and, you know, I just started trying to take better care of myself and also taking, you know, really kind of putting myself, really putting everything I can into helping Charlie. And by doing that, I, that actually ended up kind of being like therapy for me because I, I was able to put aside the, we can't figure out the why, but I actually can do something to, to help.

So this was about 2015 was when we had the second whole exm sequencing result come back as variant of unknown significance. Charlie was four, almost five years old, he was in school. We were seeking out, trying to find a diagnosis, a school diagnosis for him where he could get the services that he needed. So we went back to the developmental pediatrician with some of the concerns that his teacher and I had, I really was seeking, you know, is, is seeking out, is this autism, is Charlie, is he autistic? And, you know, our first, um, visit, our doctors weren't too sure, but after about a year, you know, his, his signs of autism really did start to show. And so he was diagnosed with autism and that really helped us be able to work with a specific i e p team at, at his school and get him the services that he needed to. Um, but you're right, Erin, it, it was like a full-time job and you know, they're doing that on top of working full-time. At this point I had graduated, I was a nurse working as a nurse practitioner, really managing my child's day-to-day life. And this therapy's on top of that. There was a time period, o o over about two and a half years was when Charlie was getting 20 hours of therapy on top of school. So outside of his school hours, 20 hours a week of therapy. You

Serious?

Yes. So we,

How, how did you even fit that? Cuz I thought a few days of week were a lot like how did you fit that into your lives?

So every day he had speech, P t O t music therapy. He did the hippo, uh, therapy, horseback riding. And then on top of that we had a b a. And so our a b a therapist was here, you know, for hours in the afternoon and evening. And it really, um, for us, ABA was the right choice then. It, it's not the right choice for every family. And you know, I totally respect that. But it worked. We had a really wonderful, um, ABA specialist and it, she connected us and with Charlie and really helped me as a parent manage some of his, his behavioral challenges in the home, um, so that I could be a better parent to him. Uh, I got just as much out of it as he did so did, so did my husband. It was really, um, a wonderful experience for us.

So yeah, I mean that was kind of where we were at. We were like, all right, well we have to just really try to help Charlie be the best that he can be. Um, and Charlie was such a trooper and he, like, he really worked really hard in therapy. But, you know, my mama heart was still very sad because we, he, he mis he ended up trading out play dates for therapy dates and, you know, over time not having those play dates , I realize that now, like he, you know, he doesn't have the, the same play skills and is that because we ended up having to do all this therapy? You know, I try not to blame myself because I do think we've done the best that we can do given the circumstances, but you know, it's really hard as a parent to, to not second guess like, did we do too much? Did we not give him like the normal things that he could do? And so, you know, he, I I still feel like we did the best we can, but it was, it's been a journey that's for sure.

And wouldn't you say, I mean, in my experience, because it wasn't 20 hours of therapy a week, but I did find myself with my son taking his sibling to go to Aqua therapy and to go to all these speech therapy and I, I just, I mean I found myself getting angry, but then I also think about societal constructs and the medical constructs where really these therapies, and that's the beauty of early intervention, should be coming to the playgrounds, to the cafes. Um, so the therapists can work with our children in these settings that are natural instead of a clinic or even in the home all the time. Um, and helping facilitate some of the conversations and playing I, which I mean, again, our societal constructs in our insurance system does not really allow for that. Cuz you have to fit so many people into a day in order to get paid. But I just feel like it's, it's not a failing on us as parents. It is a failing on the way that our system is set up and our poor kids. There's this complex that they have to be fixed and um, I, I don't know, I just find it really difficult that in, in this day and age we haven't found a way to make it easier for them to get what they need but also be a child.

I totally agree with you on that. We had a physical therapist, um, Charlie's long-term physical therapist in through early intervention and we stayed with her private um, until he was eight and a half. She would take him to the park. She, we would go to the park and she would try to, you know, if a child would come over she would definitely try to do that. But that was far and few between like that just didn't happen very often.

Sarah we're going all over the place here. So let's go back to the testing and where you were with Charlie. I think you said it was 2015?

Yes. So you know, like I said, we had kind of moved on from the why and what, and we're just focusing on what we could do to help. Um, and we were sticking with our appointments, you know, our yearly genetic geneticist appointment, our yearly developmental pediatrician appointment. And we just happened to be super lucky that it's very interesting story. But one of the specialists that I had reached out to for OS too emailed me instead of the UVA a geneticist about her paper that she was writing on OS two. And so I forwarded it to our U V A geneticist at the time and she said, let's, um, you know what, it's been a while. Let's see if Gene DX will re-look at Charlie's whole exome sequencing. And this was 2018 and a couple months went by, I didn't hear anything and then I get a phone call, the uh, genetic counselor said, Charlie's whole exome sequencing test has been changed to, from a variant of unknown significance to a variant of causing pathological disease.

He sent me the report and there was reference to Smith Kingsmore syndrome, which I had at that point. I had already read the article that had been published, um, which it was, you know, only published a couple years prior and it kind of matched Charlie, but still there were some differences. So, you know, I was hesitant to like fully accept the diagnosis and wanted to continue to reach out and see what we could do. So, um, like I had to do from the beginning, I continued to reach out to these specialists that I had met and I mean I was lucky cuz I know that families have emailed specialists before and that they don't respond because they're so busy. I get it. They have their own patient population or the emails just don't get through to them because in, you know, big hospital institutions, it's hard sometimes to reach them. And I think we just got really lucky. And again, this doctor that we were, um, that had been corresponding with in Seattle, she said, yes, this Charlie does fit that and there's a lot of new information coming out about uropathies, which S K S Smith Kingsmore syndrome is an M enteropathy. So, you know, I think you're in the right,

What is an M … what is that? And then no, it's ok. And actually I you know, I think it would help if you told us some of, uh, the symptoms as well. Um,

Sure. So, um, Charlie has a variant on the gene mTOR. So the gene mTOR is on a pathway that helps our cells and our body communicate if there's a variant, it can cause the cells to change and grow differently, sometimes rapidly. Um, and so because of that, it can cause different symptoms like large head size, large brain size seizures, um, global developmental delay, autism intellectual delay, and there's some other like hypotonia, focal cortical dysplasia. And it can cause some pretty significant changes in your M R I. And I haven't mentioned this to this point, but Charlie had had an M r I already, so we had some information about his, um, brain abnormalities that looking at it at that early prior to having the diagnosis of sks, we were told, well, there's no genetic picture that matches this yet. And that's the thing about genetics is we got told a lot of it hasn't caught up with you yet.

Like there may be something later on, you know, and I think there's a lot of families that kind of sit in that window of waiting to, for the diagnosis to be discovered are like, people are hesitant to say it's this one person has this thing. Like they wanna see that there are multiple people having the same symptoms with this genetic variant. So we, we had our diagnosis, I had a doctor that confirmed it, and then I went back to social media trying to find people that I could connect to and I did. And um, I found a Facebook group. There was like 30 people on it and I started reading and I started sobbing. I mean that was like the, the pivotal point for us. It was like these were our people, these, these families are going through the exact same thing we're going through.

Um, our, the pictures, I was like blown away. Like my son looks like these kids, like they could be siblings, um, even with different hair color, they had so many similarities and um, you know, it just like, I was happy and sad and had so many emotions. Um, but then the balls just kept rolling. Like people were motivated. We found that there were doctors that were motivated and we were able to connect with these specialists that, um, were outside of our state. And luckily we were able to travel and, and meet these doctors and other families who really wanted to start a, uh, foundation so that we can raise awareness of our small rare disease. Because living the life of, of trying to get a diagnosis for an ultra rare disease is such a long, painful journey. And if we can help others get that diagnosis earlier, then we're cutting years off of the, of that pain for them. And now we know there are babies that are getting diagnosed because there's more literature about s K s. I like to think that our foundation has had a part to do with that because we've been pushing to put information out there about Smith-Kingsmore syndrome.

It, it feels like, had there been more early on with Charlie, like with the larger head size in and of itself and what you saw, had that been associated then, do you, I mean, little things like that could have cut that journey for you down so much? No,

Absolutely. And I think, I think now in, in 2023, um, it is because we, we know like genetics has already advanced so much in just this short period of time that there are gene panels that have like seizure and large head and they're looking at, you know, specific diagnoses that match that. So if you present, if your child presents with a specific list of symptoms, then instead of having to get this whole exome sequencing approved, they can do just a specific panel which is cost efficient and helps really kind of hone in on the diagnosis. So I think we are getting to the point where it's getting faster, but there are so many of us that it took so long to get there. And there's still, I know there's still people out there that are living this journey where heir child's diagnosis has not been discovered yet. There are lots of families that are on this undiagnosed journey and hopefully as more time goes on, you know, they'll be less and less. But I think we're gonna be sitting in a, in a time period where genetics is gonna rapidly change.

I mean, yeah, I wrote this article and we'll put a link in our, in our stuff for y'all that are listening, um, interviewing you and some doctors and, and I mean it is, it's changing rapidly and it's advancing rapidly, but it's still, you know, for families that are in it, it feels like a snail's pace. And I can't help but think, you know, there's so much more information now. But what about those families who don't have the privilege that you and I have who are working two jobs who English is not their first language, you know, who are single parents and just don't have the health insurance or the time or the resources to do the research. Is there anything for them? Like is there support for them and, and how do we do better getting this information out to those who, who don't even know where to start looking?

You know, Erin, these are such great questions and I know that there's some work, um, that the, that your center's working on that V C U is working on that are hopefully gonna be helping lots of families in Virginia. I think, you know, social media, I mean, is is definitely a way to help families connect, but we're still kind of missing out on, on ways to really reach these families that wouldn't even go to the doctor to begin with, to, to kind of get the ball rolling and, you know, I think reaching out to or have like having our, our pediatricians be able to have a way to get these families to connect to other families. You know, whether like, especially like not even thinking of a specific diagnosis, but like if our, if our pediatricians are concerned that there may be abnormal or development of a, a child, like connecting them to another family so that they have support, um, because those of us that have been through it, like we wanna support other people, being able to do that in some way, shape or form, I think would be, uh, amazing. But right now, um, I'm not really sure of all the ways that that, I mean, I don't think there's a lot, that lot going on besides the work that you guys are, are getting ready to start, which I think is gonna be incredible for Virginia.

Well, yeah, so the Center for Family Involvement, not only do we have a family navigator program that helps families, um, we match families with similar conditions. So if you have a family who has someone with Down syndrome, a child with Down syndrome, we find a parent through our volunteer program to match who you can talk to. But the beauty of it is we have so many different rare conditions, right? But also cultural differences. And we, we take great effort to find people to find their people, not just with whatever disorder they may be dealing with, but whatever cultural sensitivities that go along with it. And then yes, we have just launched, um, a genetic navigator program, um, which does something similar but with these specific questions about genetics. But, you know, it, it is, it is one of those things where we're there we have help and uh, it's, it's that not everyone knows where to look.

And I think the beautiful thing, you know, we're talking about S K S and we're talking about the Center for Family Involvement, and we can talk about autism and Down syndrome, but I always stress to people that we don't silo ourselves because disability is, is still just such a small minority when you look at our country and our world, right? And developmental and intellectual disabilities are even smaller. And then when you look at rare diseases, according to the National Human Genome Research Institute, there are around 350 million people on earth with rare disorders. So this is a disorder or condition with fewer than 200,000 people diagnosed. And about 80% of these rare disorders are genetic in origin, and 95% of them don't even have a single treatment authorized and approved by the F D A, right? So when we're talking about these things that we're dealing with, it's great to find our people.

And I do like, you know, like I'm sure with S K S, you, you have this, these niches to talk about. And whenever I meet a parent of someone with Down syndrome or a person with Down syndrome, there are certain things we just know about because it's so common within the condition. But when we talk about the bigger movement in helping families and, and helping understand rare disorders, uh, I mean it's, I I I cannot stress how important it's that we work together. That's why I love having this conversation with you and learning so much more.

Yes, I think it's so important that we are supporting each other, um, regardless of what the, our child's diagnosis is because we're going to experience the same challenges, access to medical care, access to specialists, how to write that I E P for certain challenges that your child is going through, how to navigate the transition time period when your child, um, is becoming an adult. So there's so many challenges that we're going to experience that have really nothing to do with our specific diagnosis, but do have to do with those larger symptoms that our, our children's share. And so together, you know, we can really kind of make a bigger impact, not only with our own children, but with helping others. I really think it's important to give back to those that are starting off the journey, not just how to find the diagnosis, but how to access things in their community that can help their, their child, help their family to be able to, you know, have just a more quality, better quality of life.

Absolutely. And you know, something you said earlier really struck me because it's so common with so many families, is that you have to have a diagnosis to, you know, for your I E P, which is just, it's such a ridiculous thing that schools put upon families. A developmental delay is a developmental delay. We don't need to categorize it into a certain diagnosis or ID or DED or whatever, ed. I mean, it's, it's categorizing and labeling is doing such a disservice if we could just treat the student and not worry about, uh, uh, it just, uh, it's baffling individualized education plan. Look at the individual, the diagnosis should have nothing to do with it.

Well, Erin, I think we could have a whole other podcast about IEPs, ,

I think you're right.

And the challenges that we face in, in, in Virginia and probably in every state, but yes, I I we have been fighting that battle and it's, it is very true. Like the labels do not really define our children. Putting the resources together to help each child meet their milestones and be able to access their curriculum and access their surroundings and be a child is what really the focus should be on. Hmm,

Absolutely. And you're right. I, I could dive into this and that is a whole wormhole that I'm gonna keep closed because we need to, uh, we need to do an entire podcast on that. Sarah's the, the thing that I see in my family and, and some of the struggles I see have nothing to do with my son with a disability. It just has to do with everything that goes along with it. Like we've been talking and my son has, or so my son, I have three children and, and Arlo, my oldest has two younger siblings. And I see how all of the things that I have to do to support him, impact them, and they roll with it so easily because it's just part of their life. But sometimes they do feel it. And I think you kind of have the opposite, right? You have two older children. I mean, how has that journey been for them? Like, how has it been difficult? Are they understanding, are they supportive? What's that been like as a whole family?

I mean it's, you know, when you have a, a child that is, that has struggles with either developmental delay or intellectual impairment, autism, any, any diagnosis like that, it's a family affair no matter what. Right? So I think having a younger child when therapy started, um, you know, he was an early intervention. So we, I did everything during the day while my kids were at school. But then as he aged out of early intervention and went into the public school system, everything became after school. And so it was very taxing on everybody. We had to divide and conquer often, um, where one parent is taking one child to do their extracurriculars and the other parent is doing the therapies. And I had three kids. So my middle son Brady often went with me and Charlie to do the therapies. So he has really kind of been living the life of, um, of that, um, right next to Charlie, like the longest where my oldest older son was, is five and a half years older.

So he kind of already was, you know, on the path of what sports he was into. And, and so we, we, you know, divided and conquered. We luckily, um, had grandparents that live in the area, so they also were able to help. But there were times where we had no help and it was just us. And that becomes a true family affair. I definitely recommend looking to your therapy centers, to your pediatricians to find sibling classes. You know, we did those over the years. Both of my kids participated and they were always really helpful. Empathy is is something that comes from within, but also sometimes kids need to be taught a little bit about empathy and going to those classes, I found that my kids came back like refreshed and more, had more of an understanding and also making sure that they had time for themselves too. And even if that was, once I put Charlie to bed, I did movie night with just my older two, cuz that was all we could manage to, to pull off. I make sure that we have time for each child, but that's, it's an exhausting task as a parent to, to do that. You know, I definitely feel for, for all parents that are going through that,

It's really hard. I find myself struggling and realizing that I need to like find someone to be with my oldest who's 12, who should be able to stay home alone so I can spend time with the other two. Sometimes he, my oldest just will not do something. And it, it really, like, you can be out like exploring a town and looking at shops and he'll just refuse and wanna go home and there is literally no stopping him. And so, as hard as it is to like, not have him included, sometimes it's the best thing to do for the other two to experience things that they wanna do. And it's just, it's such an inner conflict dealing with this all the time. And especially when, like, we don't have family nearest, we have no supports. Every support we have is hired or asking a friend to do a favor that I might not be able to return. So I don't wanna ask them.

Yes, I to I totally understand that. And it's, it, you know, anything that we do in this house after seven o'clock is not with Charlie because that is the, that's the bedtime for him. And if we vary from that bedtime, then we do not have the best version of Charlie. And, and no, it's not fun for anybody. Um, so Erin, we, that happens to us a lot also, and there's a lot of inner conflict as a parent because you, you know, and I, I try not to, um, look at other families who are experiencing those things as a whole and rec and, and then, you know, you realize that you're not able to do that as a whole. Um, because I don't wanna put myself back in that cycle of grief, but it's very easy to, to be able to compare.

It really is. And I love that you said that, Sarah. I love that. You know, you just don't compare because it, it can be hard, especially like hanging out with my brothers and their kids, and it's just seeing how different their life is just by some chromosomes, you know, it's, it's really interesting. But yes, the but there are things that they'll never get to experience. There's joys and struggles that are so unique that they'll never know. And I guess that's the beauty of finding your people, right? Because you can share with them. And I wanted to ask you too before we run out of time, because I think what is unique about a lot of groups that we find, and what I heard when I spoke with someone that works with your organization is how much the doctors learn from parents like us because we are so busy researching because we have to, because there is no research out there on some of the conditions that people face. So as parents, we are as much a part of the medical teams in many cases as, as the doctors. I mean, has that been your experience?

100%. First of all, my advice to other families are if you are not being treated at that level with the, the team that you're working with, seek another team. Especially when you're on the journey to a diagnosis, you need to be heard and you need to be respected. And you know, people are human. You're not always gonna have that path. So if you're not finding that path, I recommend trying to seek another team, seek another specialist if you can, because you definitely need to be heard and respected in order to help your child get to that diagnosis. I, I mean, I've l I've learned from so many of medical professionals over the years, not just about Charlie's diagnosis, but others. And many times the ones that are, that stick out to me are the ones that always say, I learned from the families. The families are teaching me along the way. Um, you want that partnership, that partnership is so important. You want to feel that they really do understand and and want to help you.

Yeah. It's, it's amazing to me the relationships that you form with doctors and nurses and other professionals because of this. And I, I had to like, I was someone who never needed to see a doctor and then all of a sudden my first child stopped moving and emergency c-section and, and like my whole world flipped upside down. Right? And now I'm like talking to doctors all the time and I've learned so much. They're not like on this pedestal that we put them on. And one of the most important things I think, that I learned from one of my son's specialists is that it's a lot of guesswork and you don't realize that like they're just throwing things against the wall hoping it helps. My son has immunology stuff going on that's so complex and not understood that it's not even an official name for it. Right. And one of the doctors I worked with, I was like, can I read something? I wanna understand what these blood levels mean. He's like, there's no research to read on this. No one's been able to even see this before. This is first. So yeah, if you have a doctor that's dismissing something you're saying and doesn't wanna listen and, and doesn't take your concerns seriously, find a new one.

Absolutely. But easier said than done, especially if you have insurance that dictates exactly who you're supposed to go to or, um, you have language barriers so you don't even understand how to get, get to the, the other, um, specialists that could possibly see your child or see you. It's definitely part of the journey and it's hard, but I think that's where family supports groups can come into play. Or you know, what the Genetic Navigator program where you have, you know, if somebody is let, if somebody tells me in the beginning their journey that they're struggling, even with like early intervention therapists, I always say, if it's not a good fit for you, then it's not gonna be a good fit for your child. Like, you gotta make sure that you feel good about it because you want to learn from them and you want them to help your child. So I always try to give that advice to families when I'm paired up with, with somebody who's starting a, a new journey like this.

I think that's why it's so important to find a group to get your ideas and push them off on somebody else. So whether it's the Center for Family Involvement or like you said, you could, I mean, our communities, our individual communities are so accepting. If you have something going on and you don't know what it is, you will be welcomed. People will bend over backwards to help answer your questions. I've found that over and over again. They just wanna help because they know how hard it is. It's just reaching out.

Yeah, absolutely. Together we're stronger. Right?

Together we're stronger. That is so spot on and the perfect way to end this. But before we do, Sarah, is there anything that you'd like to add?

No, I think, you know, this is, this is a really important topic, uh, to put out there so that people know, um, how to get started, um, what somebody else has gone through and, um, what to do when you're on this journey. So I really appreciate all that you're doing to kind of highlight and raise awareness to, um, you know, walking this diagnostic odyssey to getting a genetic diagnosis, especially of rare diseases.

Well, thank you for your work in helping people find out, I mean, patient registries and working with specialists and having medical professionals be a part of your organization. I mean, this is just, this is just so important and, and it's so inspiring, um, your work. Thank you.

Well, thank you very much. It's, you know, it's really important to me that, you know, we raise awareness not just for s k s but for, um, for rare disease in general and for anybody being going through this journey so that we can kind of help them and shed some light on what we've gone through.

Excellent. Thank you Sarah.

And thank you, listeners, for joining us. Check out our show notes for more information on SKS, rare diseases and the genetic navigator support we offer at the Center for Family Involvement.

And be sure to share, review, subscribe, like, follow, or whatever it is you need so you get a ping when it drops.

This is The Odyssey: Parenting. Caregiving. Disability. I'm Erin Croyle. We'll talk soon.

How many times have you told yourself, "once I get through this week, it'll be smooth sailing;" only to end up in that same spot the following week, and the week after that, and after that?

It's gotta stop!

There will aways be work, family obligations, appointments, meetings, paperwork, laundry, and countless other pressing things to do. It's not going away.

If you want something to change, it's gotta come from within. Maybe this new year, it's time for a new attitude!

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.

SHOW NOTES:

There are very few studies on how women tolerate pain. This 2022 study explains that women were excluded from studies because of assumptions that potential hormonal changes could impact reliability in pain ratings. Yet new research shows those assumptions are false.

While there is evidence that period pain is comprable to the pain of a heart attack; renowned gynecologist Dr. Jen Gunter warns that waiting for excrutiating chest pain to tell you you're having a heart attack is dangerous, especially for women who often report having no pain with their heart attacks.

Research continues to show the importance of limiting screen time for children.

TRANSCRIPT:

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 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. Now I work for the Center for Family Involvement at VCU's Partnership for People with Disabilities.

This podcast explores the triumphs and hardships we face. We celebrate the joys that the odyssey of parenting, caregiving and disability bring all while tackling the tough stuff, too. The thing is, parenting is tough. Caregiving is tough. Middle age. It's brutal. So many of us live in the. I just need to get through this week mentality and that is bunk.

If we think that way, we're going to be white knuckling it through life until we die. There's always going to be something. So rather than waiting for the tide to turn or the pendulum to swing, it's time for an attitude adjustment. I'm going to get deeply personal here because I know the impact it can have. A good example of this is my first child's birth story.

Arlo's movement was slowing in the final weeks, and folks around me dismissed my concerns, telling me that it was natural to happen because as the baby grows, there's less room for them to move. But at 39 weeks, Arlo's movements were barely noticeable, and when he did move, it felt weak. So I went to the hospital and was immediately prepped for an emergency C-section.

My doctor later told me if I hadn't come in, Arlo would not be here. A few years later, I was catching up with a dear friend who thanked me for being so open about all those scary details. She told me that because of me sharing my story, she didn't second guess herself when her first child's movement slowed in utero.

She and her son are alive and well because they got the help they needed. Now, fast forward to modern times, and I have a new story to share that hopefully will help. Just after Thanksgiving, I noticed a red swollen mark on my calf and it was a little bit sore. But it's common for ADHD errors to get random bumps and bruises and not remember how it happened.

So I looked at it and I chalked it up to me overreacting and just powered through. I mean, after all, my son Arlo had a point with his hematologist, which is a four hour round trip away. And that was, I think, the following day. My middle guy, Emil, had a well visit and a band concert that week, and he had his own ADHD evaluations throughout the month of December.

And my daughter had an appointment with their pediatrician that week, which resulted in a referral to a behavior as the following week to help with ADHD strategies. And I knew if I pushed any of these off, it would be problematic later because like most moms, kids come first and like those hard weeks that stack up on hard weeks, I wanted to just get through that week, so maybe the next week would be easier.

Now, let's not forget, December is magic, making time for many parents. And not only am I the primary caregiver in my home, I'm the primary magic maker, too. It was a lot. And I'm even leaving out some of the hardest stuff because this is really not my space to share everything. So my body was buzzing with anxiety. I could feel it.

I would have to really focus on breathing. I just just felt just a mess inside. So the month went by, and suddenly Friday, December 20th, arrived and I felt relief. I didn't have any work deadlines. It was the last day of school for my kiddos before their winter break. Finally, I could just take it easy, maybe do some last minute holiday stuff and get ready to just be festive.

That morning when I was getting dressed, I looked down at my calf and instead of seeing that red bump, which I pretty much forgot about, I saw a faint reddish brownish line and that freaked me the food out. It freaked my partner out. It freaked the folks at Urgent Care out. And they sent me to the E.R. where I sat for hours, eventually crying because I needed to leave to pick up my kids from school.

And long story short, I was walking around with a large blood clot in my leg for a month. I was shook. What's wild to me is that I didn't even notice the pain in my leg until I was asked about the pain level. I'm a 47 year old perimenopausal woman. I hurt everywhere and no one seems to care.

So either I buried those feelings in my leg or I massed them. Whatever it was I didn't allow myself to feel pain until I was told that the pain in my leg was normal. I was pushing every feeling and instinct for my own well-being aside for a month to attend to everyone else's needs. And I think it's important to acknowledge that and recognize that we have the ability to do that to the point of unintentional self-harm.

And it's not all that uncommon, especially for women. I mean, did you know that menstrual cramps can be as painful as a heart attack? I'll put the actual medical research in the show notes. This is not an exaggeration. A man clutching his chest and falling to the ground is what we often kind of envision when we think of a heart attack.

And that's the kind of pain that many women work through every single month. And I mean work through. They go to work. They do their duties. Maybe they do a hot pad and take some pain meds, but they're functioning in a high level of pain. Think about that. There is very little scientific evidence about the differences between how males and females experience pain because women have been excluded from countless studies, including those surrounding pain.

And there's more about that in the show Notes, too. All of this brings me to the attitude adjustment that this medical scare triggered as Peter Finch's character, Howard Beale, declared in the 1976 Film Network. I'm mad as hell and I'm not going to take this anymore. The shifts been brewing for a while. My day in the emergency department just set it in motion.

When asked to describe the pain, I said what I said earlier in this episode, I heard all over. So it's hard to tell. And I repeated it whenever they asked. I would mention that if childbirth is a ten and this is a seven, what does that even mean when we're looking at your pain scale? All of this literal pain and on top of it is the mental load of being a parent and a caregiver.

Being the captain of a ship that never stops is unnatural. And that's why I'm starting this year out focusing on removing every pain point possible. What's a pain point in this case? It's those everyday struggles that just drain you with all the stuff out of control. I'm looking for the things in my life that I can change both the immediate and the long term.

These pain points can range from something as simple as buying glass bottles with lids. Right? Because I don't know about you, but no one in my family seems to understand how to properly cover food and put it in the fridge. And so I'm throwing away wilted lettuce and dried poultry cheese that's rock hard. So the results are spotty with those lids.

So far. But it's early and I'm hopeful. Now, screens, on the other hand, are one of the biggest stressors in our house. Every one of my children is hungry for a screen of any kind. Virtually all of the time. It is a constant struggle that escalates into battles nearly every day. So removing this particular pain point is a work in progress.

If the current time limits and passcodes and remote control hiding systems fail or become too much work, I have two more slightly restrictive backup plans that I'm going to implement. The first would be installing a new router because you can find some with robust parental controls that have separate networks. So I can just turn off whatever network I assign to my child or children if they're abusing their online time.

And if all else fails, I'm going to remove the device you can request with your school that your child doesn't bring their Chromebook home in middle school, whatever school, and if it's not necessary to do schoolwork, I don't want to hear. And that's kind of where we're going to head if we have to, because I don't want the fight.

And while I want my children to be able to self-regulate when it comes to screen use. Research shows that developmentally it's incredibly difficult for kids, tweens, teens and young adults to do it responsibly. Now, add neurodiversity into the mix with that easy dopamine rush that you get from all of that digital stimulation and you realize that perhaps you're asking too much of these young minds.

If adults have a hard time managing their screen time, how can we expect kids to be able to do it? And if you have any secrets, they're by all means share and I'll pass it along in a future episode. Managing expectations of ourselves and others is another area where an attitude adjustment might be in order. After all, my favorite equation is happiness equals reality minus expectations.

A great way to alleviate so much stress and frustration is to stop expecting others to fill in the blank. Think about it. Kids are not going to magically start doing their chores without reminders. Partners aren't going to be able to read our minds and do what we wish that they would do without talking about it. And we're not going to be able to break every single one of our perceived habits overnight or even by the end of the year.

We need to stop expecting these things of those around us and of ourselves. My own home is a really good example. I have busted my butt over the years trying every visual schedule and first and strategy out there. Guess what? Even with the best tools, most parents and caregivers are still going to need to remind their children to use those tools.

Human prodding is still necessary, and this is especially if disabilities. In the next hour. Santa delivered this beautiful fancy skylight calendar to our home and this bad boy. It will link to our Google calendars. It has a short list for as many people as you want to add and a reward chart to go with that. It has meal planning options.

It's amazing, but it's not magic. An adult still needs to encourage the kids to use it. An adult still needs to hand out the rewards. We've got to stop expecting adult level compliance from children. It's just not going to happen.

The biggest impact we can have, though, lies within us. Most of us are harder on ourselves than anyone around us. So I want to point out a really good starting point, especially for caregivers. Take a very close look at the hours in your days and what your day is filled with. Time and time again, I end most of my days disappointed at what I was not able to accomplish.

And then I'm overwhelmed about what's on my plate in the coming days because of that. First off, it's important to point out that getting an ADHD diagnosis a couple of years ago has helped tremendously in understanding why this is so hard for me. My mind is almost always working in hyper drive mode. Now you tack on the caregiver component of our lives, and in my house again, all three of my children, they have ADHD, which means I'm helping them manage their time, their list, their clothes, their school work, you name it, and doing this in a calm, supportive way with so much emotional dysregulation.

And each of us is not just challenging, it is draining. There's only so much patience that anyone can have on any given day, let alone when you pile all those other stressors on top. So I started looking at each hour of my day to understand why it feels like I can't get anything done. And after doing this time on it, the problem was obvious.

I was trying to do the impossible. And this is a level of impossible you can't see just by looking at my calendar. But it's just based on everything else that happens in our lives that go unseen, whether by our partners or our supervisors or our colleagues or our friends or our family or our children. Try it. Track your daily activities for a week and test this out.

Because my issue with time management is not due to scrolling through social media or watching TV or playing games on my phone or texting friends. My workday is interrupted nearly every day because of medical appointments or calls from the school nurse or because my son's hearing aids are missing and I need to bring them in, or because someone forgot an instrument, or there's an IEP meeting or a five or four meeting or I have to do paperwork for Arlo's waiver, or there's an appointment with my daughter's behaviorist, or there's a dog training session to get our pop up to service dog status.

I mean, every day there are things outside of my control where people need me and it pulls me from all the other things that I'm supposed to be doing. And the caregivers, I know we don't get personal days. If we have a smidge of time that isn't booked with caring for somebody else, then we just use it for the backlog of stuff piling up when we're caring for somebody else.

And I don't know about you, but my backlog is turning into a massive mountain that follows me wherever I go. It's like a Tetris game that I look at and see if I can take something out and get it done without triggering something else to collapse and pummel me like an avalanche full of menial tasks that never stop coming.

And I can't stop this avalanche. I set up all the supports that I can afford around me, and so the only thing left to do is to adjust my attitude. And so the first thing I started doing is to embrace that I am just going to be late. I hate being late, but I can't help it in most cases.

And I actually want to thank Mel Robbins for this one. Another podcaster, the author of the book Let Them, which I've been listening to, and it's freeing. I don't normally jump on a book bandwagon, but so far I'm more than halfway through. And a lot of it just just lets you feel free. It's the idea of let them is that you can't control what others think about you, nor should you.

And it's true. So as much as I hate being late, it's out of my control. And when I try to push everyone else to be on time, the commotion and stress and frustration it causes, it's not worth it. One appointment bleeds into the next. A five minute task can take 30. And suddenly I'm leaving for my 430 meeting at 445.

I still hate being late, but instead of dwelling on it and feeling terrible about it, I'm going to apologize, move on, and chalk it up to being a really difficult time in my life. Speaking of all those appointments and meetings, enough. One thing I've learned after 14 years of being a parent caregiver is that no one has all the answers.

Not doctors, not therapists, Not teachers. Nobody, y'all. I wish I could have recorded my daughter's session with that behavioral therapist in December. This professional was trying to reason with Maya about a reward system to help with the basics of getting to school each morning on time. And it's something I've been working on since Maya was three. To no avail.

And so when the therapist asked Maya about a reward that might be meaningful, Maya replies, $1,000,000. And Maya was dead serious. And as the therapist pushed for more reasonable options, Maya didn't hold back and kept throwing out really difficult rewards to fulfill, making it a really difficult system to set up. And in that moment, I just gave up.

And I observed my gorgeous Pharrell baby make this poor person work so hard for every minute that she was putting into this session. That's the thing about parenting. Everyone has the answers. There are books. There are professionals. There are fellow parents. But you know what? All it takes is one kid that doesn't fit into a mold. And this is why giving zero FS is a shift that pretty much every caregiver needs to make.

Caregiving is such a unique existence. Especially if you have a loved one with invisible disabilities. The judgment is everywhere. Family, friends, teachers. People observing in public. If I try to talk about any of this stuff with someone who isn't a caregiver, nine times out of ten, I'll get the whole well, my kids would behave that way if I let them.

Or you just need to blah, blah, blah. Or you should just blah, blah, blah. Or why don't you try. Bla bla bla bla bla bla bla bla bla.

If only it were that easy. And also for you for putting this on me because I am trying so hard and you saying that it's my fault or it's my parenting. Well, you don't know me then. And I'll tell you what perimenopause is helping me give far fewrer if you seek Amy's; Anyone remember that Britney Spears song?

Anyway, when my blood clot was first discovered, I was ordered to stop hormone replacement therapy, and suddenly my hot flashes were full on sweats. I mean, last night, my sweats and chills hit so badly I had to lay on the ground. I could barely breathe. It was it was something. And I think as women, we laugh this stuff off and we have heard other women in our lives laugh about it, but it's no joke.

And when you're living in it, it is absolutely miserable and distracting and at times unbearable. My brain and body are going haywire. And it last three years. So with all this, I've even given up worrying about my potty mouth. I've tried to cut back on swearing for years, but right now I'm embracing my inner Roy Kent and letting the F-bombs fly freely.

Except I'll bleep them for the podcast. It's funny, my dad hated swearing, and if he were buried, he'd be rolling in his grave. I'm not sure what the equivalent of that expression is when it's a box of ashes that my mom keeps on the coffee table next to her. Maybe he's scattering in his box. I don't know. But I like to think that if I could talk to my dad, he'd give me a free pass for sure, on the swearing. Perhaps that's the biggest adjustment I'm making in my life. Finding joy and kindness wherever I can until I'm able to produce my own Roy Kent fresh in my mind. Because my 12 year old and I are watching Ted Lasso together. It's my second time and his first and we just finished season two of Shrinking by the same creators, by the way.

These shows just ease my mind and they soothe my soul. You know those periods of life where you're pretty sure things will be okay, but it's just really hard and there's nothing tangible to look forward to. No getaways, no celebrations. You're just getting by. Simple things like a TV show to look forward to that you can talk about that makes you smile.

It's a pretty beautiful thing. The arts are there for a reason, right? But these two shows in particular touch on mental health in a way that not many others do. They're fictional examples that remind you that even though folks around you seem like they have it all together, they're going through their own stuff, they're figuring it out just like we are.

And it's messy and it's embarrassing. But we're all here getting through it together. Just look for that light at the end of this tunnel and keep on keeping on.

Thanks for listening. Be sure to review, subscribe, like follow or whatever it is you need to get a ping when the next episode drops. And while you're at it, drop us a comment and let us know what you're watching these days. This is The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle. We'll talk soon.

We're trying something different this episode: our first ever anonymous "airing of grievances."

Many of us exist in our own information bubbles, completely ignorant of what those around us might be going through. This is especially true for people with disabilities and the family, friends, and professionals who love and support them.

When The Odyssey's creator and host Erin Croyle asked, "What is something you wish others understood about your experience that you don't (or can't) talk about publicly?" - folks did NOT hold back.

What about you? What secrets do you wish you could share?

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.

TRANSCRIPTION:

01:00:06:19 - 01:00:36:11

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 a loved one has a disability. I was lucky enough to join the club, so to speak, when my first child was born with Down's syndrome in 2010. Now I work with the Center for Family Involvement at VCU's Partnership for People with Disabilities.

01:00:36:13 - 01:01:03:16

Erin Croyle

One of the mantras often shared in the Down's Syndrome community is more alike than different. While that is absolutely true for humans across the board, disabled or not, we do ourselves a disservice by not acknowledging how different our life experiences are. I've felt this deeply over the years. The society we live in, not just in the United States but globally, fails at understanding and accepting disability.

01:01:03:18 - 01:01:35:14

Erin Croyle

It's often viewed as something to fix or overcome, which is often impossible, usually unnecessary and frankly, ridiculous and insulting. Disability is one of the many things that makes us who we are. It is natural and normal. The daily struggle that people with disabilities and their families face is exhausting. It's not just about those shopping carts we see left in accessible spaces or having someone drop the R word and mixed company as if it's as innocuous as talking about the weather.

01:01:35:16 - 01:02:04:18

Erin Croyle

It's that loneliness we feel because many of the hardships we face are so private and painful that we don't speak of them. Out of respect for a child's autonomy or because we don't want to rehash it, it's the blatant ableism embedded in our systems and mindsets. It's painful microaggressions that slide largely under the radar. But not today. In honor of Festivus, I've reached out to peers who are impacted by disability.

01:02:04:20 - 01:02:21:05

Erin Croyle

For an anonymous airing of grievances, asking them what they wish others understood about their experiences, that is rarely mentioned in the public arena.

01:02:21:07 - 01:02:45:01

Erin Croyle

My husband and I are the youngest in each of our families. We became an aunt and an uncle before we became parents. And as I mentioned, I'm pretty much every podcast. Arlo, our first child, has multiple disabilities and medical complexities. Down syndrome is just the most obvious. Observing the family and friend dynamics over the years has been interesting, to say the least.

01:02:45:03 - 01:03:13:14

Erin Croyle

Arlo is more alike than different for sure, but yeesh, the way people react to him or treat him ranges from weird to downright unacceptable. The times I've tried to address the able ism we experience in our own inner circle has been met with hostility. Over the years, I've learned to just avoid certain situations and people, especially since my own neurodiversity and mama bear rage, makes it hard to simply bite my tongue.

01:03:13:16 - 01:03:45:13

Erin Croyle

And that brings us to the heart of today's episode an airing of grievances just in time for Festivus. Festivus, for those who don't know, is a secular holiday celebrated on December 23rd. Festivus came into the mainstream thanks to the sitcom Seinfeld and an episode that aired in 1997, The character Frank Costanza, played by comedy legend Jerry Stiller, delivers the iconic motto, A Festivus for the rest of us.

01:03:45:15 - 01:04:14:11

Erin Croyle

What I did not know until working on this episode is that Festivus is an actual holiday. It's based on a tradition that one of the Seinfeld show writers, fathers invented as early as 1966. For this episode of The Odyssey, There will be no flagpole and no feats of strength. Wrestling matches. Instead, it's an honest, real and raw airing of grievances, but also pain, joy and humor.

01:04:14:13 - 01:04:48:13

Erin Croyle

Because sometimes the things that are better left unsaid are also things that others need to know if they want to be fully present in our lives. This isn't just a bit an a complaint session. It's a window into our lives that we're putting out there in hopes to cultivate empathy and understanding. So without further ado, I will be reading what my friends and colleagues shared when I asked them What is something you wish others understood about your experience that you don't talk about?

01:04:48:15 - 01:05:14:09

Erin Croyle

One person shared, I wish my family and friends didn't get upset if we have to deviate from the plan. Even with the best of plans and forethought. Things come up. Being flexible is necessary. While they may be upset because they have to adjust one moment in time, I've had to adjust my whole life to accommodate my child. You're going to be okay if you just do it once in a while.

01:05:14:11 - 01:05:37:14

Erin Croyle

Another person says, Even though I rarely say yes, it means a lot to be included. So please keep inviting me to gatherings and maybe one day I'll surprise you. But if I don't know that I'm there in spirit, we all say the wrong things from time to time. Please don't avoid my family because you don't know what to say.

01:05:37:16 - 01:06:05:05

Erin Croyle

I'm working to overcome my own embolism every day. I'm ashamed about some of the thoughts that pop into my head. It's not our fault. We're conditioned to see people with disabilities as less than or other. Rather than tiptoe around it. Can we just talk about it? Stop being afraid to ask me uncomfortable questions. And if I correct you for saying something offensive, please treat it as a learning experience and react with curiosity and kindness.

01:06:05:07 - 01:06:30:14

Erin Croyle

Even if I'm not being particularly kind myself, it's hard to always offer grace and understanding when our children are still subjected to eugenics and no one blinks an eye. Just because you can't understand how I feel doesn't mean how I feel is wrong or doesn't matter. Dismissing my requests or concerns, causes me to feel like I don't matter and I'm not being heard.

01:06:30:16 - 01:06:57:11

Erin Croyle

Being different is not wrong. No one else will ever understand my struggles, but it would be nice if that was acknowledged. The following is from a person with an invisible disability who has worked with people with disabilities their entire life, both in volunteer work and actual employment. They also have a brother with multiple disabilities and they shared six different items.

01:06:57:12 - 01:07:28:02

Erin Croyle

Number one. Not every disability is visible or even noticeable to even high functioning individuals can have disabilities, both physical and mental health oriented. Three siblings can be some of the greatest support for individuals with disabilities, but are so often overlooked. Number four siblings can also feel the pressure from parents because they are, quote unquote, the normal ones. At the same time, they can feel ignored.

01:07:28:03 - 01:07:50:20

Erin Croyle

So parents need to make sure they're meeting the needs of all of their children. Five Even though it's hard to do, families need to treat adults with disabilities as adults no matter what their function level is. My brother hates when people treat him like a child. Six. You have to take care of yourself or you can't care for anyone else.

01:07:50:22 - 01:08:19:06

Erin Croyle

My mother raised a child with disabilities and myself in an era where this was almost frowned upon. Now she preaches it to everyone from her own experience. The next person said, If you claim to love and care about us, then start showing it. This work is impossible to do alone. Get involved. If you're on the PTA, for example, intentionally go out of your way to think about accessibility, equity and inclusion.

01:08:19:08 - 01:08:42:14

Erin Croyle

Caregivers are drowning in not just caregiving, but all the paperwork and red tape that still exists. We like to be involved, but we physically cannot take on anything else. We need help in breaking down barriers to inclusion. That starts with our parenting peers paying attention and figuring out what needs to be done without putting the mental load in actual work on us.

01:08:42:16 - 01:09:05:22

Erin Croyle

The systems need changing, but we're up to our ears just trudging through the day. We need allies and coconspirators. As a parent of two adult children with disabilities, one thing that frustrates me is when people say Your kids look normal, why don't they act like it? Then I feel like I have to explain everything about what's going on with my children or another personal favorite.

01:09:05:24 - 01:09:30:04

Erin Croyle

They don't look like they have a disability. One time I answered and said, Yeah, I know I had to pay extra for that. Ha ha. Caring for two adult children with disabilities can at times be very lonely outside of my family. I only have one close friend. Over the years I have lost many friends as they did not know what to do or how to interact with my children.

01:09:30:06 - 01:09:57:17

Erin Croyle

I keep trying to let people know that you just have to talk to them as you would anyone else. They're wonderful human beings and have many things to share and give to our community. As a professional with a disability, I can feel overwhelmed and frustrated when reasonable accommodations are asked for and not given. Another parent says, Just because my teenage child doesn't communicate traditionally doesn't mean you should talk to him like he's a toddler.

01:09:57:23 - 01:10:24:04

Erin Croyle

He's a teenager, for crying out loud. Another parent says, I wish my peers understood how complicated caregiving is. I don't talk about this openly because it's nobody's darn business. But total care means total toileting, shaving, teeth brushing, dressing, feeding. For girls, this means feminine hygiene. For boys, it's washing their privates. It's navigating through puberty. And later, sexual needs.

01:10:24:06 - 01:10:49:03

Erin Croyle

That whole birds and bees talk that parents get all stressed about with their typically developing kids. Imagine having to search for and hand over a social story about erections and masturbation to your teen. Everything in our lives is just next level. It's wild. Another parent said, I love my child and will do anything for them. But I hope God never gives you more than you can handle.

01:10:49:08 - 01:11:11:21

Erin Croyle

It is patently false. I'm hanging on by a thread most days. Screaming mercy on the inside. But I can't say that out loud because my child does not deserve to hear that. Sometimes I wish I could just be a parent. I'm tired. I'm getting old. My body needs a break. What you're not prepared for is that caregiving last so long.

01:11:11:23 - 01:11:35:03

Erin Croyle

My adult child with a disability still needs so much care. That includes toileting. Health care. Transportation. Preparing meals, coordinating appointments, and more. When my other kids were young, it was just part of the drill because I was taking care of everyone. But the siblings are grown now and all of my friends have moved on. There are no more school programs or playdates, but I'm still providing the same level of care for my adult child.

01:11:35:05 - 01:11:56:14

Erin Croyle

Most days I don't mind, but sometimes it can feel really overwhelming. A parent of an adult child with a disability shares. I fantasize about getting divorced, but the hardship it would create is far worse than remaining in a miserable marriage. When you have a child with significant support needs, there is so much more to consider than personal contentment.

01:11:56:16 - 01:12:24:22

Erin Croyle

Everything is more complicated finances, employment, health care and being tied to your co-parent forever because there is no when they turn 18 for us. I mean, there is. But it actually gets harder when our kids become adults. Not easier. Another parent shares. I thought that when my child became an adult, things would get easier. I was wrong. Sometimes I feel like I can't trust hope and happiness when it comes to her living her life.

01:12:24:24 - 01:12:47:16

Erin Croyle

I feel like I'm always waiting for the other foot to drop, which it usually does, And somehow I'm always shocked. And then I mourn what I wish her life could be. I remember her as a happy child, and it breaks my heart. So I try not to dwell on that too long. There are times I feel like a hypocrite when I help other families because I can't fix my own.

01:12:47:18 - 01:13:05:11

Erin Croyle

Another person wrote, People ignore me. Now they leave me alone. I'm sorry if I have not taken the time to connect with you, but I am dealing with my adult children who are not like your adult children. We have the best time and I absolutely enjoy spending time with my kiddos. But it seems apparent that they will never leave home.

01:13:05:11 - 01:13:32:18

Erin Croyle

And I'm absolutely overwhelmed. Exhausted. So freaking tired. And I just want to go hibernate somewhere. But I cannot. My children need me. I have a new disability diagnosis thanks to having had COVID and not recovering fully. I wish you could understand COVID is most certainly real and it has affected so many people with lingering issues. We have had to deal with, even after COVID has supposedly gone away.

01:13:32:20 - 01:13:56:10

Erin Croyle

A family member of an adult with developmental disabilities who's also a professional at the Partnership for People with Disabilities, says it's always interesting to share what I do with others. When I do share my profession with other professionals or friends who have not had personal or professional experience with people with intellectual disabilities. There's always a visible change in their demeanor.

01:13:56:12 - 01:14:24:13

Erin Croyle

Usually shock or confusion. I then have to explain what intellectual disabilities are and how my job works. I wish more people recognized that there's this whole population of people living and breathing in their world. People with ID live and work in their community and access the same level of community based amenities, services and supports. But it's as if most people never consider their existence.

01:14:24:15 - 01:14:59:12

Erin Croyle

I think this reaction speaks to the lack of integration of people with intellectual and developmental disabilities in our lives. Beyond the school setting, another professional who has a family member with disabilities said I wish more health care providers understood the importance of and prioritize spending more time with patients with intellectual and developmental disabilities during appointments. People with I want to be involved in their own health care, but they need more time and direction to do so.

01:14:59:14 - 01:15:29:06

Erin Croyle

I also wish more health care and community based providers like local health departments and public services on the city and county level understood that using plain language in their communications doesn't just benefit people with modifying materials, so they're universally easier to read and understand is beneficial for many other populations and could increase the uptake of programing or health care recommendations.

01:15:29:08 - 01:15:58:03

Erin Croyle

And this last one is from someone who does not want to remain anonymous. My friend and colleague Jill Rose is just the epitome of positivity most times and had this beautiful sort of grand finale of a story to end on. Thank you, Joe. When my daughter was born 14 years ago with Down's Syndrome, one of my many initial fears was that I wouldn't be able to communicate with her.

01:15:58:05 - 01:16:22:05

Erin Croyle

While her verbal skills are at the lower end. We do still communicate in our own ways. We sing and dance a lot. We've developed our own language and words. For example, we call each other Mushi, which is just a word she made up years ago. She's much more brave than I am. She rides all of the scary rollercoasters with hubby while I sit on a bench and watch the bags.

01:16:22:07 - 01:16:44:21

Erin Croyle

When we go to the doctors and I have blood taken or need a shot, she knowing how nervous I get, grabs my hand and says, Be brave. She can sense when I'm sad or anxious. It is her unique gift when she senses it, she says It's my turn as she comes to me with open arms. Her healing energy always helps.

01:16:44:23 - 01:17:03:21

Erin Croyle

I gave birth to Sophia, 14 years ago, and if I could go back in time and speak to my younger, fearful self, I would say, Don't be scared. Because in this scenario you're the lucky one.

01:17:03:23 - 01:17:30:02

Erin Croyle

Thank you, Jill. Thank you to everyone who contributed. And thank you listeners. Be sure to rate me as you subscribe. Like follow or whatever it is you need so you get a pain when the next show drops. This is The Odyssey. Parenting. Caregiving, Disability. I'm Erin Croyle. We'll talk soon.

Happy Festivus.