The Rare Life

How To Talk To Kids About Disabilities

Talking about disability with kids can feel like walking a tightrope. What do you say? How much do you explain?  And when do you just… not?In this episode, Alyssa and I share how we each approach these conversations with our own kids, from siblings and cousins to the curious child at the park. We talk about usingneutral language, why we skip the sugarcoating, and the importance of following your kid’s lead.We also explore why it’s okay to keep things simple and ouch on how to talk to our disabled kids in ways that empower them as they grow.Whether you're raising a disabled child, a sibling, or a curious kid with questions, this episode offers real-life examples and encouragement for these tender, tricky conversations.Links:Join The Rare Life newsletter and never miss an update!Fill out our contact form to joinupcoming discussion groups!Follow Alyssa at @alyssanewt!Follow us on Instagram @the_rare_life!Donate to the podcast or Contact me about sponsoring an episode.Follow the Facebook page. Join the Facebook group Parents of Children with Rare Conditions.Access the transcript on the website here. 

Inspired By Disabled Kids? What Feels Ok + What Feels Ick

When strangers call our kids “so inspiring,” it’s often meant as a compliment. But it doesn’t always feel like one.In this episode, Madeline and Alyssa dive into the uncomfortable question: Do our children exist to teach or inspire others? They unpack why that idea feels off, evenwhen the intention is good.In this episode, Madeline and Alyssa unpack the tension between learning from your child and making them a life lesson. They break down the roots of “inspiration porn,” whysome praise feels more about the speaker than the child, and how it can reduce complex lives to feel-good stories.They also talk about what true respect looks like, and why your child doesn’t need to teach or inspire anyone to be worthy of love and support.If you’ve ever flinched at a compliment or struggled to explain why some praise feels wrong, this one’s for you.Links:Join The Rare Life newsletter and never miss an update!Fill out our contact form to joinupcoming discussion groups!Follow Alyssa at @alyssanewt!Follow us on Instagram @the_rare_life!Donate to the podcast or Contact me about sponsoring an episode.Follow the Facebook page. Join the Facebook group Parents of Children with Rare Conditions.Access the transcript on the website here. 

Mixed Feelings When Your Child’s Health Stabilizes w/ Jessica Loey

When your child’s health stabilizes, it should feel like a win. But about when it just feels...complicated?In this episode, Jessica Loey joins Madeline to talk about the messy reality of “after.” They explore what it’s like to go from survival mode to something that looks more stable, and how this can bring up guilt, grief, and a strange sense of disconnection from your past and your community.If you’ve ever wondered where you belong now that your child is more medically stable, this one’s for you.Links:Join The Rare Life newsletter and never miss an update!Fill out our contact form to join upcoming discussion groups!Follow Jessica at @loeyjessica!Follow us on Instagram @the_rare_life!Donate to the podcast or Contact me about sponsoring an episode.Follow the Facebook page.Join the Facebook group Parents of Children with Rare Conditions.Access the transcript on the website here.

Medicaid Cuts | Implications for Families Like Ours + What We Can Do About It

When the federal government slashes Medicaid funding, states are left to decide what happens next... and families like ours are left bracing for the fallout.In this mini episode, Madeline and Alyssa talk about what these federal cuts really mean for families of disabled and medically complex children. They break down the impacton Medicaid HCBS waivers, what states can (and might) do next, and why the math just doesn’t add up for our kids.They also get real about the mental health toll of uncertainty, the pain of being ignored, and what it means to build community resilience when the systems built tosupport you start to crumble.If you’re feeling confused, furious, or just deeply tired, this conversation is for you.Links:Join The Rare Life newsletter and never miss an update!Fill out our contact form to joinupcoming discussion groups!Follow Alyssa at @caffeinated_caregivers!Follow us on Instagram @the_rare_life!Donate to the podcast or Contact me about sponsoring an episode.Follow the Facebook page. Join the Facebook group Parents of Children with Rare Conditions.Access the transcript on the website here. 

Groundhog Days, Gradual Changes, & Deep Family Ties | Marci’s Catch-Up

When you’re deep in the world of disability parenting, it’s easy to feel like every day is the same. The meds. The appointments. The routine that doesn’t seem to change much, even as the years go by.In this episode, Marci returns to share what life looks like now, two and a half years after her conversation about grieving her daughter Freya’s intellectual disability. Sheopens up about the slow pace of progress, the grief that still sneaks up on her, and how, while parts of Freya’s disabilities are difficult, her family cherishes and celebrates Freya’s joy in the day to day.We also talk about the messy emotions of school decisions, the heartbreak of communication barriers, and why disability has pulled Marci into the world of politics—whether she likes it or not.If you’ve ever felt caught between acceptance and grief, you’ll feel right at home in this one.Links:Listen to Ep 114: Grieving Our Children’s IntellectualDisabilities + Facing Our Internalized Ableism with Marci Dunning.Follow Marci on Instagram @ freyasluckyarm!Follow us on Instagram @the_rare_life!Join The Rare Life newsletter and never miss an update!Fill out our contact form to joinupcoming discussion groups!Donate to the podcast or Contact me about sponsoring an episode.Follow the Facebook page. Join the Facebook group Parents of Children with Rare Conditions.Access the transcript on the website here.