Shows
The Rare Life180: Does Disability Parenting Ever Get Easier? Survival Mode, Burnout Mode, and Beyond w/ Erica Stearns and Alyssa NutileThe age old question: Does this life ever get easier? And if so, when?Just as you might expect, the answer isn’t quite cut and dry, but in this episode, I’m joined by Erica Stearns and Alyssa Nutile to sort through this complex question. Using their Caregiver Continuum framework, they offer a way for you to orient yourself and gain footing as a disability parent, even if life doesn’t always feel like it’s getting easier.If you’ve been feeling lost and overwhelmed in this parenting journey, this episode is here to give yo...2025-02-1359 min
Caffeinated CaregiversEp 12: From Hospital to Home: What They Don't Tell You (and what we've been doing the last six months!)We’re back and ready to dive into the community complaint department! In this episode, we catch you up on our six-month hiatus (spoiler: it’s been a mix of zero-fun medical stuff and a few bright moments). Erica’s disappointed with Alyssa’s coffee fail, but we’re making up for it with real talk about the challenges caregivers face, from feeling unprepared when heading home to navigating medical machines and interventions. Plus, we’re sharing an exciting research opportunity for caregivers who want to make an impact. Tune in for relatable rants, practical tips, and a call to action fo...2025-01-1459 minThe Rare Life174: A Case Against Silencing Disability Parents on Social Media w/ Alyssa NutileWe all have stories to tell, and we all have a right to tell them... but on social media, sometimes it feels like we have to do it in a specific way.
Because if we don't use the perfect words and the right framing, we risk a small but vocal cohort of other disability parents and disabled adults coming into our space, monitoring our content, and sometimes harassing us through comments and messages.
And it goes without saying that this kind of behavior is not okay and can actually cause long-term harm for both parents...2024-11-071h 40Caffeinated CaregiversEp 11: Tricky Feelings Around Disability Pride and Where Caregivers Fit InIt's the last day of Disability Pride Month, which is appropriate considering that we at Caffeinated Caregivers have been avoiding talking about this topic all month. To be honest, Disability Pride has got us up in our feels a little bit, because as disabled adults who are also caregivers to disabled kids, it brings up a lot of conflicting and confusing emotions as we try to figure out our place in all this.And as far as we can tell, we're not alone in feeling a little confused about how we're supposed to engage with Disability Pride...2024-07-3146 minCaffeinated CaregiversEp 10: Mental Health Breaking Points & Overcoming Fear Around Asking for Support with Karley HendersonThis week, we're not bringing you stats or data or research... we're just bringing ourselves and our friend Karley. Because the truth is, data can only tell you so much, but for the three of us, some of the most impactful information we've ever received about navigating this caregiving life is through other's individual experiences.So today, we're getting a little vulnerable in sharing the moments that convinced each of us that we needed mental health support, the fear and shame that kept us from accessing support earlier, and why we ALL deserve mental health support at any...2024-07-011h 01
ASHA VoicesExploring Caregiver-Provider InteractionsHear a conversation with SLP Tovah Feehan, who specializes in pediatric feeding disorders, and the hosts of the Caffeinated Caregivers podcast. Through their podcast and website, Alyssa Nutile and Erica Stearns create community around, advocate for, and highlight the identity of caregivers. Guests discuss provider and caregiver interactions. Hear stories from their lives and work.Learn More:Caffeinated Caregivers: What does it mean to be Disability-Informed? (And why does that matter?)ASHA Voices: The Critical But Unseen Social Determinants of HealthASHA Leader: Rethinking Pediatric Feeding ... Language...2024-06-2030 minCaffeinated CaregiversEp 9: Mental Health Vibe Check: The State of Caregiver Mental Health & the Supports That Keep Us Going in 2024Hey caregiver. How are you doing? No, we mean, how are you *really* doing?Because according to the research (both our informal research and the many published academic studies), mental health for caregivers isn't great. The "why" probably isn't surprising: lack of support, stress, poor health for our children, lack of time, and a ton of other barriers that keep us from accessing the mental health support that we need. But what can help to improve our mental health might surprise you a little bit.In this episode, we're sharing lots of published research (because we seem...2024-04-151h 09Caffeinated CaregiversEp 8: Facing Uncertainty in Caregiving: IEPs, Social Security, and In-Home Nursing, Oh My!When it comes to being a caregiver to a medically complex and/or disabled child especially in 2024, life can feel.... uncertain. Covid-era legislation that helped caregivers in many states is now being rolled back, support that our families and children need to thrive can be taken away at a moment's notice, and the threat of unexpected changes can make planning for our children's futures incredibly difficult. And these aren't just random examples. Erica and Alyssa are both navigating these uncomfortable waters right now. In this episode, Erica and Alyssa share what's been keeping them from the podcast t...2024-03-2545 minCaffeinated CaregiversEp 7: The State of Caregivers and Careers & Why That Matters For Our Medically Complex KidsWhen it comes to the careers of caregivers… things are complicated. While some caregivers are able to maintain a wide variety of careers with the help of flexible work, home health nursing, understanding employers, and other supports, it’s not like that for every caregiver, including those who need income desperately.And on the other hand, the systemic supports in place to support caregivers and their families, whether they wish to continue their careers or devote all of their time to caring for their child, vary widely by state and are often inadequate to cover all of a fa...2024-01-221h 03Caffeinated CaregiversEp 6: The Caregiver Continuum: This Is Why We’re Always TiredThe Caregiver Continuum. The continuum on which we as caregivers find ourselves looping around and around… and around again. We’ve gone through it. We’ve watched our fellow caregivers go through it. And today, we’re giving it a name.On this episode of Caffeinated Caregivers, we’re explaining what the Caregiver Continuum is, why it’s such a powerful tool for understanding both your journey and your capacity at any given time in your life as a caregiver, and how you can use it to give yourself —and your fellow caregivers— the grace and sp...2023-12-1850 minCaffeinated CaregiversEp 5: Surviving Thanksgiving (literally), Holiday Hot Takes, and an Idea-versaryToday’s conversation is a little lighter than usual becaaaaaaaause Erica and Alyssa are both still recovering from the holidays. Alyssa, because she always travels on holidays, and Erica, because she was literally sick the whole week. But don’t worry, this conversation is still packed full of holiday thoughts for you. Erica and Alyssa both share glimpses of what their holidays often look like (and let’s just say, their holidays look very different.) They also share their favorite holiday survival suggestions from this community (some are so thoughtful, and some are hilarious but also ver...2023-12-0448 minCaffeinated CaregiversEp 4: Did we invent a new term?! (Or why are so few professionals disability-informed?)Disability-informed… If you’ve been following us, you’ve heard us use this phrase non-stop in the last month. So, you would expect that to be a common phrase, right? After all, the idea seems relatively self-explanatory. Well, hold on tight friends, because once again, the disabled folks are being overlooked and under-consulted. We’re about to share some wild statistics on just how bad this situation is. In this episode, Erica and Alyssa are breaking down all the parts of what it means to be “disability-informed” in a variety of aspects. Not only that, but they cover...2023-11-0649 minCaffeinated CaregiversEp 3: Disability-Informed Caregiving and a couple of really good moms (and no, we're not talking about ourselves)In their last introductory episode, Erica and Alyssa share how their own experiences as disabled children shaped the way they navigate caregiving now. They touch on the examples that their own parents set as caregivers, the emotional weight caregivers carry for their kids, and the many ways we turned out to be better advocates for our kids than we ever were for ourselves.Plus, we each share our BIG SNAP. You know, that moment when you fully embrace the intense advocate you need to be to get your kid the proper, timely medical care or access they deserve.2023-10-1649 minCaffeinated CaregiversEp 2: Cared For to Caregiver: How two disabled kids grew up to parent their own disabled childrenErica and Alyssa get super vulnerable and share their own experiences of growing up as disabled children. We talk about our disabilities, the many feelings that come with growing up in a noticably different body, our complicated feelings on being seemingly "less disabled" as adults, and the way our experiences with disability have informed our whole lives. This conversation is not one where we claim authority over anyone or superiority over any other kind of caregiver. Instead, we're sharing our experiences to give all of us a more well-rounded view of disability and caregiving. We're so glad...2023-10-0944 minCaffeinated CaregiversEp 1: Caregiving, coffee, and maybe too much information: an introduction to Caffeinated CaregiversIt's our very first episode, and we promise we talk about way more than just coffee! Erica and Alyssa get into everything including how they first met, their own parenting and caregiving experiences, the power of language to describe our shared experiences, and what they hope to create and share through this podcast.If you're looking for a chill, lively conversation between two friendly caregivers, this is the space for you! We're so glad you're here.In this episode: [01:13] What we're drinking (spoiler alert: there's some coffee)[06:33] A little about our...2023-10-0246 minCaffeinated CaregiversWelcome to Caffeinated Caregivers!Welcome to Caffeinated Caregivers, with your hosts Erica Stearns and Alyssa Nutile, two caregivers and parents to medically complex children who are out here, ready to build a community of caregivers to empower each other and advocate for better support — for themselves and those they care for.Each month, we'll bringing you stories, research, resources, and hopefully a few laughs too as we chat with medical professionals, disabled adults, AND other caregivers who are laugh-crying their way through life.To stay up to date with episode releases and to join our community of caregivers, follow us...2023-09-2701 min