Shows
The Rare LifeBook Review: “How to Handle More Than You Can Handle” by Amanda Griffith-AtkinsWhat does it really mean to care for yourself while raising a disabled child? Not the bubble bath kind of self-care—but the kind that starts with naming your anger, your grief, your jealousy, and not pushing them down just because “good parents don’t feel that way.”In this episode, Amanda Griffith-Atkins joins Alyssa and I to talk about her new book How to Handle More Than You Can Handle: Caring for Yourself While Raising a DisabledChild. Amanda shares what led her to write this book and how the book is structured to be helpful...2025-06-1224 min
Reimagining LoveThe Journey of Raising a Disabled Child: Cultivating Community and Self-Compassion with Amanda Griffith-AtkinsWe are all connected to folks with disabilities, whether they’re part of our inner circle, or members of our broader community. Unfortunately, there’s a great deal of stigmatization, misunderstanding, and judgement that crops up around disabled folks and their families. Parents of disabled children are traveling on a different path than other parents, and often need more support, but the people around them don’t always know how to provide it. Therapist Amanda Griffith-Atkins joins Dr. Alexandra on this episode to offer guidance to those parents, as well as the people around them. When Amanda’s son Asher wa...2025-06-1052 min
Book Friends ForeverHow to Handle More Than You Can Handle By Amanda Griffith-Atkins (Audiobook Excerpt)On sale June 10th, 2025
A guide to navigating the emotional experience of caring for and raising disabled children with high-support needs, from a therapist and parent of a disabled child.
Amanda Griffith-Atkins, a therapist who is also one of the millions of people raising a disabled child with high-support needs, knows firsthand about the dark places parents go—the grief, the anger, the frustration—and the shame these feelings can bring up. In her practice, and now her book, she gives parents an invaluable set of tools to find the strength, acceptance, and self-compassion to face these hard emotions to beco...2025-06-1004 minThe Rare Life189: Grief in Disability Parenting | What it is, Why It’s There, + How to Process It w/ Amanda Griffith-AtkinsGrief around our children’s disabilities can take many forms. Some of us are grieving the life we thought we’d have with our child that looks so very different now. Others of us are grieving the very real possibility of losing them too soon.In this episode, therapist and fellow disability parent Amanda Griffith-Atkins joins me to talk about the complicated grief that comes with raising a disabled or medically complex child.We explore how this grief can morph and change, how it shows up in the quiet, ordinary moments, and how deeply human it i...2025-05-0155 min
Brave Together Parenting: a podcast for parenting disabilities and unique needs.EXPERT: When You Wish Your Kid Had a Different Diagnosis with Amanda Griffith-AtkinsHello Brave Friends! Welcome to today's expert episode, #211. These are conversations with experts in fields relevant to caregiving parents. Our guest today is LMFT Amanda Griffith-Atkins, who is another Brave PWS mom as well as an author with a book coming out in June! Hooray! Her book is called How to Handle More Than You Can Handle: Caregiving for Yourself While Raising a Disabled Child.We’ve had Amanda on before too, so if you want to hear more from her we’ll link to that episode, #144, a...2025-03-2629 minThe Rare Life185: Medical Parent Trauma | Dealing with Triggers + Ongoing Trauma w/ Rosey Schaefermeyer, LCSWThere are certain moments that never leave you—the sight of your child turning blue, the smell of hospital-grade hand sanitizer, the feeling of helplessness as doctors take over. Medical trauma doesn’t just happen to our kids. It happens to us too.In this episode, therapist Rosey Schaefermeyer joins us for a deep dive into how medical trauma shapes parents, how it lingers in our bodies and minds, and why it’s so easy to feel stuck in survival mode. Rosey shares how trauma builds on itself, why some moments become impossible to shake, and what parent...2025-03-2049 minThe Rare Life182: Hobbies for Disability Parents | Why We Need Them + How to Squeeze Them In w/ Amanda Griffith-AtkinsWhen your life revolves around medical schedules, appointments, and constant caregiving, hobbies can feel a little unnecessary. Where do we find the time? The energy? The mental bandwidth?It’s easy to fall into the trap of thinking that any time spent on ourselves is selfish. But for many of us, finding ways to adapt our hobbies to fit into our medicalized life can be game-changing.In Ep 182 of The Rare Life, Amanda Griffith-Atkins joins me to dive into all things hobbies: the loss of identity when we lose them, the guilt and grief that ca...2025-02-2748 minThe Rare LifeHoliday Mini 6: Find Your Community in TRL Discussion GroupsBuilding connections can feel impossible when life is already
overwhelming. That’s where The Rare Life discussion groups come in.
In this episode, I’m pulling back the curtain on our discussion
groups—virtual gatherings that feel more like a book club than anything else.
You’ll hear from three amazing facilitators about the friendships, resources, and support they’ve found through this space.
If you’ve been searching for a place where you can connect with other disability parents who just get it, this is your invitation.
Links:
Join The Rar...2025-01-0912 minThe Rare LifeHoliday Mini 5: The New Year for Disability ParentsFor disability parents, the New Year doesn’t always mean
lofty resolutions or big changes. It might mean survival mode, holding boundaries, or simply getting through the day.
In this episode, I’m sharing your thoughts on New Year’s
resolutions—why they’re hard, how they shift, and what really matters when life is unpredictable. From survival mode to tentative hope, this is a conversation about giving yourself grace.
If the traditional “new year, new me” doesn’t fit your life, this one’s for you.
Links:
Join The Rare Life newsletter an...2025-01-0209 minThe Rare LifeHoliday Mini 4: 2024 for Medical Parents | Highs and LowsWhat if the hardest part of your year was also the one that shaped you the most?
In this special mini-episode, I read submissions from the community that capture the resilience, heartache, and triumphs we’ve all experienced this year (including
a few entries that count as both highs AND lows.)
From the heartbreaking realities of denied services and exhausting diagnoses to the incredible wins of first smiles and newfound independence, it’s a powerful reminder that no matter how hard it gets, we’re never alone.
Tune in for a dose of solida...2024-12-2619 minThe Rare LifeHoliday Mini 3: The Silent Suffering | A Poem Reading + Discussion w/ Kara BerasiWhat if the hardest part of your journey was the part no one saw? The silent suffering that happens behind closed doors, in the dark hours of the night, when the mask comes off and the tears flow.
In this mini-episode, I’m joined by Kara Berasi, who shares her powerful poem, The Silent Suffering. We talk about the emotional weight of caregiving, the exhaustion of advocacy, and the struggle to be honest about the pain. We also cover the way that sharing through art can allow the people who
love us to get a glimpse into th...2024-12-1918 minThe Rare LifeHoliday Mini 2: Gift Giving Grief for Disability Parents w/ Amanda Griffith-AtkinsHolidays are supposed to be full of joy, right? But for disability parents, gift-giving can bring a whole mix of feelings: grief, frustration, and why did they buy this moments. Instead of magic, we’re juggling unconventional (or maybe not age-appropriate) toys for our kids, therapy equipment wrapped in bows, and family members who just don’t get it.
In this episode, I’m replaying part of Ep 108 with Amanda Griffith-Atkins where we talk about the challenges of shopping for our disabled kids and managing those tricky expectations. We're diving into the heartbreak of gifts that miss the ma...2024-12-1225 minThe Rare LifeSC Mini #1 | Disability Parenting Book Recommendations w/ Amanda Griffith-AtkinsSticker Club 2024 is live!! And to celebrate, we’ll be handing out a book bundle of six amazing disability parenting books in a giveaway sponsored by Amanda Griffith-Atkins.
In this episode, we’re sharing the titles of these disability parenting books, what we love about them, and how you can enter the giveaway to win this book bundle! (Spoiler: joining Sticker Club today will get you a leg up!)
If you want to learn more about how to support The Rare Life, get some awesome stickers as a thank you, and potentially win this book bund...2024-11-0113 minThe Rare Life173: Everything You Need to Know About Sticker ClubIt’s the moment you’ve all been waiting for... The Rare Life Sticker Club is back and better than ever! In case you missed it last year, Sticker Club is an annual fundraiser for listeners to help support the show by signing up for a monthly donation (and as a thank you, we send you stickers!)
In this episode, we’re telling you all about the new designs (there are three this year, and they are so cool!), how Sticker Club works, the new options for receiving your stickers, and how to join an awesome giveaway for St...2024-10-3116 min
I Don't Know How You Do ItThe Power of Acknowledging the Suck, Real Talk with Amanda Griffith-AtkinsWhat would happen if we were all more honest about what we're really going through? Amanda Griffith-Atkins, therapist and mother of a child with Prader-Willi Syndrome, has built a powerful community around that very question. In this raw and refreshing conversation, Amanda challenges the "special needs warrior" narrative and toxic positivity that often surrounds disability and caregiving. She opens up about navigating her son's complex needs while maintaining her own identity, and shares how her journey transformed both her approach to therapy and her understanding of human connection. This episode offers a masterclass in scrapping the "at least" statements...2024-10-2937 minThe Rare Life171: The Financial Strain of Medical Parenting w/ Amanda Griffith-Atkins + Alyssa NutileIt’s no secret that parenthood is expensive. But when it comes to parenting a medically complex kid, the dial is turned up to 100. Everything with an “accessible” label is marked up 10x. We have to make renovations to our homes and vehicles with little to no financial assistance. And that’s often on top of career and work changes that have made our finances tighter to begin with.
In this episode, I’m bringing back Alyssa Nutile and Amanda Griffith-Atkins to sort through the thoughts, feelings, and anxieties from this community about the financial aspect of this life...2024-10-171h 05
The Book I HAD to WriteBook coach Joelle Hann: There's a big gap between the dream and the published book (Re-release)Book coach Joelle Hann—aka “The Brooklyn Book Doctor”—joins me to discuss the journey from book idea to finished product. Joelle delves into common obstacles for first-time authors, the transformative nature of writing, and the importance of mindset and resilience.She also shares insights from her Book Proposal Academy and highlights trends happening in the publishing industry, especially post-pandemic. Whether you’re stuck at the beginning or seeking to refine your manuscript, this episode provides great guidance on navigating the daunting path to publishing. (This episode was originally released in July 2023.)---------"When peopl...2024-08-2831 min
Conquering Your ClownfishPreparation, Love, and Self-Care with Amanda Griffith AtkinsIn this powerful episode of Conquering Your Clownfish, Amanda Griffith Atkins opens up about her journey as the mother of Asher, who was born with the rare condition Prader-Willi syndrome. Amanda shares the challenges of living in a world that often feels inaccessible, adapting to new perspectives, and the hard parts of raising a child as a part of the rare disease community. Amanda is on a mission to give parents permission to acknowledge their struggles while still loving and supporting their kids. She offers advice for planning for the future as a caregiver and the importance of guilt-free...2024-06-2530 minThe Rare Life159: Sharing the Mental Load with Your Partner in Disability Parenting w/ Amanda Griffith-Atkins + Will AtkinsNothing breeds resentment faster than one member of a romantic partnership feeling like they're pulling all the weight in one area of life. And when it comes to the parents of medically complex kids, that resentment can compound even faster, especially as the mental load of navigating medical care often falls onto one partner. (Let’s be real: it’s usually the mom.)
In this episode, we’re diving into this topic of sharing the mental load – and how we can make that load-sharing a little more equitable. Amanda Griffith-Atkins and her husband join me to pull b...2024-05-0252 minThe Rare Life156: Should I Get a Divorce? Insight + Solidarity from Divorced Medically Complex Parents w/ Amanda Griffith-AtkinsMaking the decision to leave your partner is no small thing, but sometimes, the rifts that come from the stresses of life as medically complex parents can erode our relationships.
So how do you know if divorce is an option, and where do you start if you’re exploring that possibility?
In this episode, Amanda Griffith-Atkins joins me to share advice on the unique issues surrounding divorce between parents of medically complex kids and read experiences shared from the community of other women who have already separated or divorced their partners. We talk through fears, he...2024-04-111h 09
Raising DisabledGuilt with Amanda Griffith AtkinsText Us!On this episode we talk with Licensed Therapist and Disability Parent/Advocate Amanda Griffith Atkins and she answers these questions from our listeners:Why do we as parents feel guilty when we take time for ourselves/self-care? What can we do if we feel guilty about our child’s injury or diagnosis?What do you say to people who have guilt about what happened to their baby in utero?What do you say to parents who feel that they need more hours in the day and they aren’t doing enoug...2024-03-291h 18
Confessions of a Rare Disease MamaTalking about all the things with The Rare Life's Madeline CheneySend us a textThis week I sit down with founder and host of The Rare Life, Madeline Cheney. She started her podcast in 2020, but the seed was planted 3 years prior—when doctors found troubling results at her 20-week ultrasound that pointed to a rare syndrome during her pregnancy with her second child. She and her husband Juston have two beautiful children, their 7-year-old daughter Wendy, and their now 5-year-old son Kimball. I have been a long time fan of the Rare Life, so I was so excited to talk with Madeline and learn more about her an...2024-03-261h 22The Rare Life153: Hurtful Things Loved Ones Say and Do | How it Affects Us + What to Do About It w/ Amanda Griffith-AtkinsHave you ever been in a conversation with someone close to you only to be cut to your core by their offhand commentary about your disabled child, their medical issues, or the life you and your child have? Friend, you are not alone.
In Ep 153 of The Rare Life, Amanda Griffith-Atkins, whose sone has Prader-Willis syndrome, joins us to address some of the hurtful comments we've received from those close to us. She gives us some helpful tips for navigating those uncomfortable interactions, mending certain relationships, and how to know when a relationship might not be worth...2024-03-211h 15The Rare Life147: Sex + Disability Parenting | All the Ways It Takes a Hit + Ways to Reclaim It w/ Amanda Griffith-AtkinsIf you feel like you’re missing out on sexual intimacy in your life since entering your medically complex or disability parenting journey, you are not alone! We took a poll on Instagram and 90% of respondents said that their sex life had been impacted by medically complex life.
The reasons for this impact are endless: no time, no energy, no space, no emotional bandwidth, and the list goes on. So in this episode, we’re diving into specific thoughts and struggles from this incredible Rare Life community on the state of sexual intimacy in their lives.
Ama...2024-02-0855 minThe Rare LifeWhen Your Child is Inpatient at Hospital During Holidays or Special Events w/ Amanda Griffith-Atkins [REPLAY]There’s not much that feels worse than getting stuck in a hospital during the holiday season or having to miss a special celebration due to appointments or illnesses. Of course, there’s the trauma of being in the hospital again, but it’s also lonely, isolating, and demoralizing to feel like everyone gets to celebrate except for your family. You might feel pressure to experience the holiday early or find ways to celebrate in the hospital – or you might be too exhausted and just skip the event altogether.
Whichever way your family chooses to navigate these difficul...2023-12-0745 minThe Rare LifeIsolating at Home During Holiday Events to Avoid Illness w/ Amanda Griffith-Atkins [REPLAY]No one wants to spend the holidays feeling isolated or left out, but the reality for parents of medically complex/disabled children is that we sometimes have to skip events and gatherings for the safety of our kids. On top of that, we’re the ones stuck making the decision whether to stay home or go out, requesting accommodations and assurances to protect our kids, and trying to decipher if we’re “overreacting” out of anxiety or just being reasonably careful.
In today’s episode, Amanda Griffith-Atkins and I discuss how to manage and interpret anxious feelings you might...2023-11-3043 minThe Rare LifeThe Holidays + Why They Can Be Tough for Disability Parents w/ Amanda Griffith-Atkins [REPLAY]When you have a child with a disability or other medical
complexity, the holidays can feel like a minefield, as trauma triggers, anxiety, and grief for what we wish the holidays could have been for our families lurk around every corner.
And on top of that, having to manage schedules, special
diets, gift expectations, and uncomfortable commentary from friends and family can be emotionally and physically draining. The season often leaves parents of disabled children feeling left out, over-worked –and occasionally– like the celebrations might just be more trouble than they’re worth.
In today’s episod...2023-11-221h 37The Rare Life142: What If My Disabled Child Outlives Me? w/ Amanda Griffith-AtkinsWhat happens if we go first? Who will love our child and protect them the way that we do? Society has a view of how the parent-child trajectory goes, and the situation with our medically complex and rare kids feels so backwards, so where can we turn to find resources to set up our children and keep them safe when we’re gone?
In this episode, Amanda Griffith-Atkins and I tackle this tough reality. We share notes from this community from all the feelings that come up around leaving our child alone in this world to the ma...2023-11-0952 minThe Rare Life138: Therapy 101 | Barriers Disability Parents Face + How to Receive This Much-Needed Care w/ Liz Spitzer, PhDIf you’ve been around in the medically complex world for a
minute, you’ve surely heard others talk about therapy. But maybe you’re still asking yourself, “have I been through enough to even need it?”
Liz Spitzer, PhD and rare mom herself, is here to reassure everyone that we all deserve care, including therapy, no matter how much or how little we’ve endured comparatively.
In Ep 138 of The Rare Life podcast, Liz breaks down the different types of therapy parents and caregivers of medically complex children can benefit from and also how to access th...2023-10-1255 minThe Rare Life135: Careers + Family Roles | The Ways They’ve Been Impacted by Disability Parenting + The Resentment We Feel w/ Amanda Griffith-Atkins, LCSWWhether you're trying to manage a career and care for a medically complex child, or you've had to suspend your career for the sake of your family, none of us can escape the impact of this rare and medically complex life.
In Ep 135 of The Rare Life, Amanda Griffith-Atkins and I share responses from listeners about the ways their careers have been impacted by having medically complex children, and all of the feelings that come up for us around that. It’s certainly not as simple as “Well, I got to keep working, and that’s great,” or
“I ha...2023-09-2155 minThe Rare Life132: When “Self-Care” Gives Us the Swears | the Inaccessibility of Self-Care + How to Redefine It w/ Amanda Griffith-Atkins, LMFTIs it just me, or as the parent of a medically complex child, does hearing the word “self-care” in a general context make you roll your eyes? Most of us are just trying to keep our kids and ourselves alive and mostly healthy. We don’t have time for bubble baths or hours at the gym or spa
treatments. So what does self-care look like (in the most feasible and east cringy way possible)?
In today’s episode, Amanda Griffith-Atkins is back one more time to discuss this topic. We share all the thoughts and feels from this com...2023-08-311h 09The Rare Life131: Chronic Stress + Our Bodies | Ways Our Physical Health Takes the Hit w/ Amanda Griffith-Atkins, LMFTParenting children with medical complexities and rare diseases is incredibly stressful. This isn’t news to any of us who’ve been living this life for a little while. More surprising are all the ways – and there are SO MANY – that stress can show up and cause issues in our physical bodies.
From insomnia and exhaustion to weight and body changes to health problems and chronic illnesses, we’re sharing all the ways chronic stress has manifested physically in our bodies in today’s episode. Amanda Griffith-Atkins joins me once again as we discuss the impact on chronic stre...2023-08-2456 minThe Rare Life130: Fearful of Child Loss | Anticipatory Grief + the Ways it Guts Us w/ Amanda Griffith-Atkins, LMFTEvery parent fears losing their child. But for most parents, that fear is vague and instinctual more than it is a likely reality.
When it comes to parenting medically complex children though, this fear isn’t far-fetched, and it’s not something that lives only in our nightmares. The possibility (or in some cases, the certainty) that we could lose our child colors everything from the way we interact with those around us
to the choices we make when it comes to structuring our lives.
In today’s episode, Amanda Griffith-Atkins joins me once again to expl...2023-08-171h 12The Rare LifeHealth Anxiety w/ Amanda Griffith-Atkins, LMFT (Rebroadcast)So many of us have experienced trauma related to our children’s health and safety. So, it’s no wonder that we get thrown into a frenzy and our adrenaline pumps anytime our child gets sick or seems off in some way. Our bodies anticipate danger and additional traumatic events even if we logically know they are safe, or we don’t have enough information to conclude anything yet, or that situations are different now.
In this episode, rare mom and LMFT Amanda Griffith-Atkins and I discuss ways that we have experienced health anxiety as well as what i...2023-07-2756 minThe Rare LifeShould A Child’s Disability be Part of Their Parent’s Identity? w/ Author Emily Ladau and Amanda Griffith-Atkins, LMFT (Rebroadcast)Like most other parents, my sense of identity forever changed with the arrival of my disabled child. And in many ways, it’s helped me to embrace (at least on good days!) a lifestyle I used to resent.
But I’ve noticed a pushback from the disability community in claiming our child’s disabilities as part of our own identities. So, of course, we had to examine this controversial and intimate topic with the best of the best.
In this conversation with famed disability activist, speaker, and author of Demystifying Disability, Emily Ladau and Amanda Griffi...2023-07-0653 minThe Rare LifeFamily Planning When You Have a Medically-Complex Child w/ Amanda Griffith-Atkins LMFT + 13 Special Guests (Rebroadcast)When you have a child with a medical complexity or disability, so many things get flipped on their head. And one of those things is family planning. Something that may have seemed relatively simple and straightforward becomes muddled and complicated.
We wonder—rightfully so—if we have the mental and physical capacity to care for an additional human being. And if we choose to move forward with adding to our family, how can we endure the anxiety that would likely flood us during a subsequent pregnancy? And further complicating matters still, what if we’re a carrier for ou...2023-06-151h 33
Brave Together Parenting: a podcast for parenting disabilities and unique needs.Flexibility is Key with Amanda Griffith-AtkinsIn extreme parenting, mastering flexibility is key! We never know what is around the corner and our kid’s unique needs keep us permanently on our toes. But we are also the ones providing routine for our kids, especially those who struggle with anxiety. So we have to stay nimble, dancing between providing the necessary structure and going with the flow enough to avoid a mental break! In today’s story we hear form Amanda Griffith-Atkins who shares about a family vacation she went on with her son, who has Prader-Willi Syndr...2023-05-3128 min
Podcast de Miguel Angel FernandezCountry Music-Las otras versiones01-Tumbling Dice - Linda Ronstadt
02-Wicked Game - Midland
03-Can't Help Falling in Love - Chris Isaak
04-Jesse Daniel and Jodi Lyford -You Asked Me To
05-Amanda Shires - Honky Tonk Heroes
06- Travis Tritt - Take It Easy
07-Emmylou Harris - The Boxer
08-Mama's Don't Let Your Cowboys Grow Up to be Babies - Dale Watson
09-Casey's Last Ride - John Denver
10-Promised Land -Jerry Lee Lewis
11-Speed of the Sound of Loneliness-Nanci Griffith
12-Gentle On My Mind-Alisson Kraus
13-I Still Miss Someone - Suzy Bogguss and Chet Atkins2023-05-2956 minThe Rare Life123: “Special Needs” + Why Parents Need to Drop the Term w/ Kari Harbath and Disability Activist Hannah Setzer (VOICEOVER)**This is the voiceover version. There are two versions of this episode! One where you can hear directly from Hannah, and one where we used an AI voiceover. If you have hearing loss or auditory processing difficulties, or are listening in a noisy car, the voiceover version is here for you to access this awesome conversation!
Have you ever given much thought to the terminology we use to describe our medically complex kids (and ourselves)? The words we use might seem inconsequential at first glance, but I’m talking with Kari Harbath (mom to a disabled daughter) an...2023-04-201h 03The Rare Life123: “Special Needs” + Why Parents Need to Drop the Term w/ Kari Harbath and Disability Activist Hannah Setzer**This is the original version. A voiceover version is available on this platform. If you have hearing loss or auditory processing difficulties, or are listening in a noisy car, the voiceover version is here for you to access this awesome conversation!
Have you ever given much thought to the terminology we use to describe our medically complex kids (and ourselves)? The words we use might seem inconsequential at first glance, but I’m talking with Kari Harbath (mom to a disabled daughter) and Hannah Setzer (disabled activist), to explain why the
terms we use for our kids ar...2023-04-201h 03
The Birth Trauma Mama PodcastEp. 28: Disability Parenting After Birth TraumaAmanda Griffith-Atkins, LMFT joins me to share her story of navigating parenting a child with a disability after birth trauma. Amanda is a fellow therapist and has built an incredible community in this space to support other parents experiencing the challenges that come with disability parenting. She has a beautiful way of creating space to acknowledge the struggle and the darkness, while still providing hope. Join us as we discuss the complexities of parenting children with disabilities, while also trying to recover from a traumatic experience. You can find Amanda on Instagram @amanda.griffith.atkins or her w...2023-04-061h 01