The Rare Life

Latest Episodes:

123: “Special Needs” + Why Parents Need to Drop the Term w/ Kari Harbath and Disability Activist Hannah Setzer (VOICEOVER) Apr 20, 2023

Show notes

**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) and Hannah Setzer (disabled activist), to explain why the terms we use for our kids are really important and set the tone for how disabled children and adults can move about in the world.

In this episode, Hannah describes her experience as a disabled child and now a disabled adult and why she prefers the term “disabled” instead of special needs. She and Kari also discuss how they’ve heard the term “special” used in society and why that just isn’t an ideal description for our kids.

And I want to add, this conversation isn’t about calling out or shaming anyone! We’re just here to give you another perspective and offer you an alternative to some very popular (but kind of infantilizing) terms often used in wider society. We’re so grateful that you’re here and willing to tackle topics like this with us.

Links:

Watch this episode with subtitles on YouTube.

Get a copy of Hannah’s book “I’ll Pray for You: and Other Outrageous Things Said to Disabled People.”

Get a copy of Demystifying Disability by Emily Ladau.

Listen to Ep 85 with Emily Ladau and Amanda Griffith-Atkins on the identity of parents related to their disabled children.

Listen to Ep 121: When Strangers “Just Ask” with disabled author James Catchpole.

Listen to Episode 10 and Episode 11 to hear Kari’s first episodes on The Rare Life.

Follow Hannah on Instagram!

Follow Kari (and Sloan) on Instagram!

Follow me on Instagram!

Donate to the podcast via Buy Me a Coffee.

Contact me about sponsoring the podcast.

123: “Special Needs” + Why Parents Need to Drop the Term w/ Kari Harbath and Disability Activist Hannah Setzer Apr 20, 2023

Show notes

**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!

Links: Watch this episode with subtitles ⁠on YouTube.⁠

Get a copy of Hannah’s book “I’ll Pray for You: and Other Outrageous Things Said to Disabled People.”

Get a copy of Demystifying Disability by Emily Ladau.

Listen to Ep 85 with Emily Ladau and Amanda Griffith-Atkins on the identity of parents related to their disabled children.

Listen to Ep 121: When Strangers “Just Ask” with disabled author James Catchpole.

Listen to Episode 10 and Episode 11 to hear Kari’s first episodes on The Rare Life.

Follow Hannah on Instagram!

Follow Kari (and Sloan) on Instagram!

Follow me on Instagram!

Donate to the podcast via Buy Me a Coffee.

Contact me about sponsoring the podcast.

Follow the Facebook page.

Join the Facebook group Parents of Children with Rare Conditions.

Access the transcript on the website here.

And if you love this podcast, please leave us a rating or review in your favorite podcast app!

122: 5 (Surprising) Things Parents Want Special Ed. Professionals to Know w/ Tiffany Goodchild Apr 13, 2023

Show notes

Parenting a child with medical complexity or disability often means learning a ton of new skills—and new systems—often in a very short period. Making that process more difficult is the fact that many of the individuals working in those systems, like special education professionals and therapists, aren’t actually parents of disabled children if they even have children at all. And because of this, communication between both sides can be... let’s just say difficult at times. Here to help bridge the gap is a former Sp. Ed. professional and mom to a disabled son, Tiffany Goodchild.

In today’s episode, Tiffany shares all the things she wishes she had known as a Sp. Ed. professional before she had her son. She shares difficult experiences that she’s had navigating the Sp. Ed. system, even after having worked in it for years, and it’s her goal to help educate other special education professionals to make the special education system better for both professionals and kids.

To this end, we’ve made digital and printable flyers that you can send to the Sp. Ed. Professionals in your life. We’d love for you to send this episode to anyone who works in special education so we can make the system work better for everyone. Get a copy of the flyers here.

Finally, an extra special thanks to Trexo for sponsoring this episode! Check out their website and Instagram to see their amazing robotic devices in action!

Links:

Visit Trexo’s website to get more information about their assistive devices.

Follow Trexo on Instagram to see their products in action.

Send this flyer to your Sp. Ed. professionals! Printable version or digital.

Get a copy of No Such Thing as Normal by Megan DeJarnett.

Get a copy of Demystifying Disability by Emily Ladau.

Listen to Ep. 59 about IEPs with Catherine Whitcher, M. Ed.

Listen to Ep. 68: Dipping My Toes into Educational Advocacy.

Check out the Kourageous Karter Foundation.

Follow Tiffany on Instagram!

Follow me on Instagram!

Donate to the podcast via Buy Me a Coffee.

Contact me about sponsoring the podcast.

Follow the Facebook page.

Join the Facebook group Parents of Children with Rare Conditions.

Access the transcript on the website here.

And if you love this podcast, please leave us a rating or review in your favorite podcast app!

121: When Strangers “Just Ask” + How to Handle That w/ Disabled Author James Catchpole Apr 06, 2023

Show notes

As parents of medically complex kids, we’ve all been there. We’re at the park or the grocery store with our kid, and someone we don’t know walks up to us and starts asking questions about our child. You might be so put off that you don’t know what to say. Or you might just start saying whatever pops into your head, which can devolve into unintentional oversharing, because we’re often under the impression that it’s rude NOT to answer a question.

But if you’ve ever wanted permission to just not answer invasive questions from strangers, this episode is here to validate you. I’m talking with James Catchpole, author and publisher, about his experience as a disabled adult and how he deflects or simply (but politely) refuses to answers questions from strangers about his disability.

He also shares about his experience as a disabled child and how his parents were able to set a helpful example for how on how to navigate questions about his disability as he grew older. Whether your child will eventually be able to advocate for themselves or if you as the parent will be their advocate indefinitely, this episode will give you lots to think about when it comes to dealing with uncomfortable and invasive questions about your child’s disability or medical status.

Links:

Listening to Ep 100 on Raising Awareness.

Get a copy of James’ book “What Happened to You?”

Read a collection of parenting essays written by disabled parents (including a chapter by James and his wife Lucy.)

See more of James’ work and writing on his website!

Follow James on Instagram!

Follow me on Instagram!

Donate to the podcast via Buy Me a Coffee.

Contact me about sponsoring the podcast.

Follow the Facebook page.

Join the Facebook group Parents of Children with Rare Conditions.

Access the transcript on the website here.

And if you love this podcast, please leave us a rating or review in your favorite podcast app!

120: Alexis’ Story | Epilepsy, Holland, + Suicidal Ideation Mar 30, 2023

Show notes

If you’ve been doing this rare or medically complex life for a while, how much do you remember about those early days? Maybe you were still searching for a diagnosis or maybe you’d just gotten one while still dealing with the fog of having a medically fragile infant. Or maybe you’re in that space right now, still coping with the news of a recent diagnosis or traumatic birth.

Those early days are so important and so impactful to reflect on, so today, I’m talking to new mom Alexis about her daughter Claire’s recent rare diagnosis, how she’s coping with her new life as the parent of a medically complex infant, and some of the really hard, really dark parts that can come right after receiving a diagnosis for your child.

A warning, this episode will discuss some very heavy mental health thoughts, including suicidal ideation, so if that’s not something you’re in a place to hear, that’s okay! Maybe skip this one.

And a big thanks to our generous sponsor for this episode, GeneDx!

Links:

If you’re dealing with suicidal ideation or have had suicidal thoughts, please reach out. Call 988 if you’re in North America or visit the Suicide and Crisis Lifeline to get help.

Visit GeneDx on their website for more information on genetic testing, where they’ve made it their mission to get timely diagnostics to families like ours.

Read the poem “Welcome to Holland” by Emily Perl Kingsley.

Listen to Ep 95: The Parable of the Pain Scale.

Listen to Ep 108: The Holiday + Ways to Cope.

Listen to Ep 25: On EMDR and Trauma Therapy.

Find a licensed therapist in your state who works with parents of disabled or medically complex children on Amanda Griffith-Atkins' therapist directory.

Get remote therapy from a licensed professional at BetterHelp.

Follow Alexis on Instagram.

Follow me on Instagram!

Donate to the podcast via Buy Me a Coffee.

Contact me about sponsoring the podcast.

Follow the Facebook page.

Join the Facebook group Parents of Children with Rare Conditions.

Access the transcript on the website here.

And if you love this podcast, please leave us a rating or review in your favorite podcast app!

119: Your Child’s Medical Team | How to Push Back, Ask Questions, and Build Your Dream Team w/ Dr. Kelly Fradin, MD Mar 23, 2023

Show notes

Of all the skills we have to learn as parents of medically complex children, one of the most difficult is often just finding a medical team that you trust, and that trusts and respects you as well. When it comes to dealing with doctors and other specialists, it can sound like they’re speaking a different language, and we are often coming to the table from two very different perspectives.

So in today’s episode, Dr. Kelly Fradin, MD shares with us how we can better communicate with our child’s medical team and advocate in a way that feels less frustrating. She offers some amazing advice on how to navigate getting second opinions, how to ask questions that get to the root of the issues at hand, and even how to find those seemingly rare physicians who are willing to go above and beyond for our children.

If you’ve been trying to find better ways to work with your child’s medical team, this episode is for you!

And a big thanks to this episode’s sponsor, MOOG Medical, maker of the Infinity pump. If you’ve been frustrated with your child’s assistive feeding devices, go on over to MOOG’s website, take a look at their products, and ask your medical team if their products might work better for you and your child!

Links:

Learn more about MOOG Medical on their website and ask your medical providers if their products might be right for you!

Listen to Ep 58: Medical Advocacy with Tameka Diaz.

Listen to Ep 118: Organization Hacks for ideas about keeping track of providers and appointments.

Preorder Dr. Kelly’s book “Advanced Parenting” here!

Learn more about Dr. Kelly Fradin on her website.

Follow Dr. Kelly on Instagram!

Follow me on Instagram!

Donate to the podcast via Buy Me a Coffee.

Contact me about sponsoring the podcast.

Follow the Facebook page.

Join the Facebook group Parents of Children with Rare Conditions.

Access the transcript on the website here.

And if you love this podcast, please leave us a rating or review in your favorite podcast app!

118: Medical Organization Hacks | Supplies + Info + Appointment Scheduling Mar 16, 2023

Show notes

When it comes to caring for children with rare disease or medical complexities, I never expected that keeping all our supplies organized, our appointments scheduled, and the mental energy that goes into just staying on top of life would be one of the biggest challenges. And as it turns out, I’m not alone with that feeling!

So today’s episode is a community-collaboration. On Instagram, I asked for all your best tips for staying organized, and you delivered! We have hacks for making tube-feeding easier, organizing all the physical “stuff” we need for our kiddos, staying on top of appointments, keeping track of medical information, and more.

If you’ve felt exhausted, overwhelmed, and inadequate about the way you have – or haven’t yet – been able to organize your child’s medical life, this episode is here to make you feel seen and then maybe give you a few ideas to make the organization process feel more manageable.

A big thanks to our sponsors for this episode, Mejo, FreeArm, and the Glory Days planner! All three of these are incredible tools for saving mental and physical energy when it comes to staying organized, and we’re so thankful they’ve partnered with us to bring all these ideas to you!

Links:

To get a link or photo for many of the tools, tricks, and ideas in this episode, check out our blog post!

Check out the video form of this episode for photos of hacks shared!

Get 20% off your FreeArmorder with code RARE20.

Use the Mejo app to organize and easily access all your child’s medical records.

Get a Glory Days planner to stay on top of every appointment, therapy session, and specialist visit.

Listen to Ep 61and Ep 62 for the story of Erica Ryan and her family, and check out the tools Erica made to make lives like ours easier.

Follow me on Instagram!

Donate to the podcast via Buy Me a Coffee.

Contact me about sponsoring the podcast.

Follow the Facebook page.

Join the Facebook group Parents of Children with Rare Conditions.

Access the transcript on the website here.

And if you love this podcast, please leave us a rating or review in your favorite podcast app!

117: Trauma-versaries + Other Triggers to Our Medical Trauma w/ Hailey Adkisson and Madhura Katre Mar 09, 2023

Show notes

Traumaversaries... those terrible anniversaries of traumatic events. As parents of medically complex of disabled children, we all have them, often linked to medical trauma that our families have experienced.

So often, the feelings that come up on these days feel overwhelming and unavoidable. But you are not alone. Today, I’m sharing my conversation with Hailey Adkisson and Madhura Katre, two moms of medically complex daughters, about how we handle our traumaversaries. We cover tips to get through these rough anniversaries, how to give yourself grace about managing the rough days however you need to, and how we appreciate when those traumaversaries finally start to feel a little less triggering.

I hope you feel seen, held, and understood after listening to this episode. I know I did, and I’m so honored to share it with you. Happy listening, friends.

Thanks to Hailey and Madhura for the amazing conversation and a huge thanks to our sponsor, MOOG Medical.

Links:

Visit MOOG Medical for tips and assistance with feeding devices on their website or call their helpline at 800-970-2337.

Listen to Ep 25 on EMDR Therapy with Rosey Schaefermeyer, LCSW.

Find a licensed therapist in your state who works with parents of disabled or medically complex children on Amanda Griffith-Atkins' therapist directory.

Get remote therapy from a licensed professional at BetterHelp.

Follow Hailey & Juniper on Instagram.

Follow Madhura on Instagram.

Follow me on Instagram!

Donate to the podcast via Buy Me a Coffee.

Contact me about sponsoring the podcast.

Follow the Facebook page.

Join the Facebook group Parents of Children with Rare Conditions.

Access the transcript and download the research articles Hilarie cited on the website here.

And if you love this podcast, please leave us a rating or review in your favorite podcast app!

116: Kinda Obsessed | Celebrating Our Relationships with Our Children With Rare Conditions w/ 24 Parent-Contributors Feb 28, 2023

Show notes

Today, we have one of my favorite episodes ever to share with you! It’s Rare Disease Day, and while we’ve done episodes for this awareness day in the past, I wanted offer something a little different this time around.

So instead of a discussion of rare diseases or diagnoses or even awareness, we’re celebrating the beautiful and unique relationships we get to have with our rare kiddos. I asked parents from our community to record their answers to four questions about their relationship with their kids, from your favorite thing about your child to your favorite moments with your kids to the moments that have made you the most proud, and we received 24 responses. Listening back through them to compile this episode, I teared up more than once because all these responses were bursting with love and connection.

Some of the reflections shared were so personal and tender. At the end of the day, it’s so clear to me that we are all our kids’ fiercest advocates and number one fans, but it’s not every day that we actually get a space to talk about just how amazing our kids are. If you’re the parent of a child with a rare disease (or any medical complexity!), you’re going to love this episode.

And if you’d like to join in the celebration, we’ll be asking these questions again on Instagram this week (link to my page is below) and you’ll be able to share your own answers with all of us.

Thanks again to each and every parent who shared audio with us for this episode. I’m so honored that you feel safe and supported in this space and that you’ve let us into these tender moments. Together, we’ve created something so special and I’m so excited to share this episode with you.

Links:

Check out our incredible sponsor Trexo Robotics and learn more about their robot legs!

Follow me on Instagram!

Donate to the podcast via Buy Me a Coffee.

Contact me about sponsoring the podcast.

Follow the Facebook page.

Join the Facebook group Parents of Children with Rare Conditions.

Access the transcript and download the research articles Hilarie cited on the website here.

And if you love this podcast, please leave us a rating or review in your favorite podcast app!

A big, big thank you to everyone who contributed thoughts and suggestions to this episode:

Madeleine @madeleineoudin

Alison @growinupgrounded

Sarah @s_fowler19

Katie @katiemelan_

Brittany @britbratsteitz

Daniel @disorderrarediseasefilms

Kathryn @bornbyariver

Karley @karley_l_h

Loren @lorenecm

Carolina @carolq14

Rachel @alvesmomkickingcask

Julianna @howlinghive

And more! Checkout the website for all the details.

115: Melanie Dimmitt’s Story | a Diagnosis Delivered in Bite Sizes + How It Started Vs. How It’s Going Feb 23, 2023

Show notes

Today, we have a very special guest, Melanie Dimmitt. Melanie’s son Arlo has cerebral palsy, which isn’t a rare disease, but so many listeners reached out to recommend Melanie’s book Special to me. After reading her journey of coming to terms with her son’s diagnosis and navigating her new life of medically-complex parenting, I knew we had to talk to her.

Before Melanie received her son’s diagnosis, she was a little terrified of having a child with a disability. It wasn’t just that she was afraid of how hard it would be, but that she would miss out of so many parts of parenting and family life. But as she soon found out, while parenting a child with disabilities can bring significant challenges, it also brings extreme joy.

In today’s episode, Melanie shares the story of how her son Arlo was diagnosed with cerebral palsy, the way she viewed disability before Arlo, and how her view of parenting and raising a child with a disability has shifted since his diagnosis (it’s drastic!). She also explains how she wrote her book Special. to help rebrand disability parenting and offer support and encouragement for new parents who have found themselves in the same shoes as Melanie.

This conversation was so encouraging and uplifting. You’re not going to want to miss it!

Links:

Learn more about our generous sponsor Moog Medical’s Infinity Feeding Pump.

Get your copy of The Blend Magazine.

Order a copy of Special. By Melanie Dimmit.

Check out Kelle Hampton’s book, Bloom.

You can find out more about the Upsee Harness here.

Follow Melanie on Instagram.

Follow me on Instagram!

Donate to the podcast via Buy Me a Coffee.

Contact me about sponsoring the podcast.

Follow the Facebook page.