• The Odyssey: Parenting. Caregiving. Disability.

  • De: Erin Croyle
  • Podcast

The Odyssey: Parenting. Caregiving. Disability.

De: Erin Croyle
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  • Resumen

  • The Odyssey podcast explores the unique journey we're sent on when a loved one has a disability. We dig deep into the joys and hardships. We celebrate how amazing the odyssey of parenting, caregiving, and disability are. But we don't shy away from the tough stuff either. Each episode will explore topics that hit a little different because of our life experience. Our guests' perspective will sometimes bring comfort and other times challenge the way we see the world. centerforfamilyinvolvementblog.org
    2023
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Ciencias Sociales Crianza y Familias Relaciones
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Episodios
  • Self-Care is a Joke (That We Need to Take Seriously)

    Self-Care is a Joke (That We Need to Take Seriously)
    May 7 2025

    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:
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    45 m
  • Raise a Glass to Sobriety

    Raise a Glass to Sobriety
    Mar 30 2025
    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. ...
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    13 m
  • Rare Diseases Can Impact Anyone

    Rare Diseases Can Impact Anyone
    Feb 27 2025
    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 ...
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    49 m
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