The Rare Life
The Rare Life
Madeline Cheney
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Curated by a fellow special needs mom in the trenches, The Rare Life features Madeline’s own experiences and take-aways as she parents her son Kimball who was born with several major birth defects due to his extremely rare genetic disorder, as well as conversations with other parents who share their own advice and stories of loving a child with medical complexities. Their authentic conversations don’t shy away from the strong and mixed emotions that often accompany special needs parenting. Guests will also include a variety of professionals, offering practical advice and solutions on anything from processing grief and trauma to ways to encourage language in a child with hearing and/or vision loss.
18: Season 2 Kickoff
Season 2 is finally here! I’ve been really looking forward to Season 2 because I have some amazing guests to share and the theme is dynamite. We will be focusing on our personal journey and evolution as parents! In this kickoff episode, I share summaries and audio clips of the first four episodes in Season 2 so you can really whet your appetite for the good stuff coming! Listen to the Preface episode here: https://therarelifepodcast.com/show-notes/preface Visit my website for the full transcript and comments! https://therarelifepodcast.com/ TRANSCRIPT: Madeline Cheney  0:00   Hi! You're listening to The Rare Life. I'm your host Madeline Cheney, and today I'm thrilled to kick off Season 2. As a reminder, each season is structured around themes. If you want a little more information about that and you haven't already, please go to the preface episode. That is where I explain a lot more about the podcast, the purpose of it and how it works, and a little bit of getting to know you. In a nutshell, each season's theme is a loose theme that mostly guides the topics for the professional episodes, my solo episodes, and parents' special topic episodes. And the story episodes are much looser in their themes. So Season 2's theme is our personal journey. It is all about the way that our children and their medical needs, and their special needs have affected us as people. I'm really excited about this topic. I think it's really fascinating to explore how it's changed us, for better or for worse, and most often a combination of the two. A few episode topics include grief, self-care, trauma counseling, and mindfulness. Per tradition, I will give you a glimpse into the first four episodes of Season 2. Our first parent story episode is The Story of Claire with her mom, Katie. Claire has a very rare and lethal form of dwarfism. Among other things, in this episode, Katie shares the heart-wrenching experience of being told that their daughter Claire would not survive childhood. Katie is hilarious and she's real, and I really enjoyed this conversation with her. Her special topic episode is the following episode, and she shares all about anticipatory grief as she has experienced with her daughter...
Oct 15
6 min
17: Season 1 Finale
Well that’s a wrap! Reminisce about the amazing episodes from Season 1. We’ll listen to the season in the form of short audio clips, and I’ll share feedback about a few episodes from Season 1 from unexpected (but amazing!) audience members. Thank you for an epic first season! We’ll be back October 15thwith Season 2’s kickoff episode! Link to my episode in All About Audiology: https://allaboutaudiology.com/all-about-deaf-plus-and-rare-disorders-episode-41-with-madeline-cheney/ Facebook Page for The Rare Life: https://www.facebook.com/The-Rare-Life-Podcast-100145211681157/?view_public_for=100145211681157 Follow me on IG here: https://www.instagram.com/the_rare_life/
Sep 24
8 min
16: Strategies to Support Selective Eaters w/ Kimberly Hirte, SLP
From food play to food chaining, there are many practical strategies in this episode, as explained by speech language pathologist Kimberly Hirte. She is dedicated to helping what she calls “selective eaters” eat an increased quantity and variety of foods while fostering a fun and secure mealtime experience. LINKS: Vegetable cutters: https://amzn.to/2C3c2Wl Adjustable Highchair (Tripp Trap): https://amzn.to/3gRl6wa Straw trainer cup: https://amzn.to/2CkQaFZ Divided suction plate: https://amzn.to/38KIcBS More on the division of responsibility in feeding: https://www.ellynsatterinstitute.org/how-to-feed/the-division-of-responsibility-in-feeding/ Short and nubby baby spoons: https://amzn.to/32cL0Xl
Sep 17
37 min
15: Communicating w/ a Nonverbal Child
Ever feel totally overwhelmed communicating with a non-verbal child? Parents Candace and Shawn have been there. In this special topic episode, they share things they’ve learned along their 8-year journey with their son Miller. This episode has lessons to be learned from for parents of every kind, but especially those that long to improve their communication with children for whom spoken language just isn’t an option. Their advice can be summed up in 3 aspects: 1. Be creative. 2. Be flexible. 3. Be persistent Etsy PECS communication systems: General PECS etsy page: https://www.etsy.com/search?ga_order=most_relevant&ga_search_type=all&ga_view_type=gallery&ga_search_query=pecs+cards&ref=return_to_search&organic_search_click=1&explicit=1&q=pecs+cards Printable version ($5): https://www.etsy.com/listing/591467629/picture-communication-pecs-cards-for?ga_order=most_relevant&ga_search_type=all&ga_view_type=gallery&ga_search_query=pecs&ref=sr_gallery-1-4&organic_search_click=1 Portable device ($17+):https://www.etsy.com/listing/766745671/aac-portable-device-waterproof?ga_order=most_relevant&ga_search_type=all&ga_view_type=gallery&ga_search_query=pecs&ref=sr_gallery-1-2&organic_search_click=1 For pictures, comments, and the full transcript, visit the website: https://therarelifepodcast.com/show-notes/ep-15-communicating-w-nonverbal-child TRANSCRIPT: Candace  0:00   "No one thing has been the ideal form of communication for him. So he uses several forms of communication which is intense as a parent." Madeline Cheney  0:13   Hi, I'm Madeline Cheney and you are listening to Episode 15 of The Rare Life. Today I have a special topic episode from Candace and Shawn. They shared all about their son Miller with Angelman syndrome last week in Episode 13. As we talked about in that episode, their number one challenge with Miller is his non verbal ism. So today they have chosen to share things that they have learned in trying to communicate with him. They sum it up in three aspects: be creative, be flexible, and be persistent. And they have some really great insight. So whether you have a child that is nonverbal, you know a child that is nonverbal, or you're curious about what it is like, join us. Let's dive in. Welcome back, Candace and Shawn. Candace  1:06   Hello! Madeline Cheney  1:08   Today for our special topic, we're talking about communicating with a nonverbal child and things that you have learned in your journey with Miller thus far. And so, what kind of tip or advice would you like to give to parents that may be also in that similar situation with a nonverbal child?
Sep 10
24 min
14: The Story of Miller
Miller is “joy personified”, very social, and loving. But that isn’t to say there aren’t major challenges that come along with having a child with Angelman Syndrome. Their number one challenge is Miller’s non-verbalism. He also sleeps 2-3 hours per 24-hour period and can even go days without sleep, largely because of his hyperactivity, and he also is prone to having seizures. In this conversation, Candace and Shawn share these challenges and solutions they’ve discovered in the course of his 8 years of life. Candace shares her journey in finding Miller’s diagnosis at almost 2 years old whilst going through a divorce from his bio-dad, and Shawn’s experience in entering their lives and being totally and completely accepting of Miller and his differences. We also talk about the prospect of curing Angelman syndrome, their choice to call Miller “disabled” instead of “special needs”, and the isolation that comes with having a child that has differences and challenges that few understand. ---- Mini-doc about Miller and family: https://www.youtube.com/watch?v=9iQLAHobfAU Donate to FAST, and help fund a cure here: https://cureangelman.org/ Learn more about resources for children with Angelman here: https://www.angelman.org/ --- For images, comments, the full transcript and more, visit the website: https://therarelifepodcast.com/ TRANSCRIPT: Shawn  0:00 "And then as soon as you say chromosomes, they're like Oh, so like Down syndrome. And I'm like No." Madeline Cheney  0:08 Hi, you're listening to The Rare Life. I'm your host Madeline Cheney. Now that we are into September, we have a new question of the month. This question of the month is a little more complex. It is: What is your favorite toy/tool/supply for (fill in the blank). This could be for dwarfism, hearing loss, vision loss, autism, low muscle tone, trachs, etc, etc, etc. So when you go to fill out the question, there will be a field that you can fill in to tell us what category your favorite tool, toy, or supply is for. And so I think it'll be really great for us to be able to share what we have learned as far as things that have been helpful. And this will be also a great thing for us to go to, I think, for birthday ideas and Christmas ideas, I'm really excited to see what you guys say. So head over to the website, therarelifepodcast.com both to answer September's question of the month and to look through the answers from last month. This is Episode 14: The story of Miller. This is our first ever episode with both parents in the interview, and I really loved it. It was great to have both perspectives and I'm hoping to be able to have that be more of the norm now so that this truly can be a podcast for both parents of children with rare conditions. Today we have Candace and Shawn talking about their son Miller. They talk about the challenges that come with having an eight year old with Angelman syndrome, like navigating non-verbalism, sleep issues, and seizures. They also talk about the prospect of a cure for Angelman syndrome, and what that would mean for them and Miller. Candace also shares about receiving Miller's diagnosis when he was almost two years old and while she was going through a divorce. Candace and Shawn have five children between them, Miller being the youngest. Shawn teaches English as a second language and he also has a background in film....
Sep 3
48 min
13: Feeding Tube Adventures
“Tubie”: Do you know what it means? Before Kimball came along, I hadn’t a clue what the term meant (a word among many I learned courtesy of my medically complex parent status). Whether you know that term because you have a child known as a “tubie” or “tubie-graduate”, or you are only now catching on to what it means because of contextual clues, this episode is meant for you. In this solo episode, I share my intense love/hate relationship with my son’s feeding tube and give a little peek into our personal experiences with it, in all it’s convenient, hellish glory. I also share a bit of what it was like for me to exclusively pump for Kimball’s nutrition. For comments, pictures, and the full transcript, visit the website. https://therarelifepodcast.com TRANSCRIPT: Madeline Cheney   "I love his feeding tube. I hate his feeding tube. But I love his feeding tube because it kept my son alive." Hi, you're listening to Episode 13 of The Rare Life. I'm your host Madeline Cheney, and I have a solo episode for you today. I have chosen to give an entire episode about Kimball's feeding journey. This is actually a topic I don't love thinking about or talking about because it has been something I don't try to remember. I have a lot of hard, traumatic memories from trying to feed Kimball. He is a G-tube graduate. And he now is able to eat by mouth, which we're really excited about. At two years old, he still has his G-tube button as needed, that's for surgeries. It's also been like really helpful when Kimball is sick. So let's talk feeding tubes, both for people who can relate and have children who have been tube-fed or still are tube-fed. And for those who wonder what it's like to have a child with a feeding tube. So, Kimball needed a feeding tube straight off, right after he was born. He never has breastfed and it took him a long time before he would take a bottle because of his nose and I've I've talked about this in previous episodes, but really quick just as a review, because he does no nose bone, his nasal airway is really restricted like he has hardly any opening in his nares (which is a fancy word for nostrils). And so before he was born, we kind of knew that that was a possibility for him to have feeding issues, because babies need to breathe through their nose while they're taking a bottle or nursing. And so that is kind of his main reason for needing a tube. Later I kind of--that's what they always blamed it on. But later I kind of suspected also that his low muscle tone had a lot to do with his inability to take a bottle because I think he just tired out really fast. And as he got bigger, and a little bit stronger and older, he was able to take a bottle really well, but I still noticed his nose didn't seem any more open, like he still had a lot of issues with his nose. And so I was like, I think that maybe more of his muscle tone. So anyway, that's kind of my suspect, but we don't really know. But I think it's a combination of his airway and his low muscle tone. So, when he was born, he was given an OG tube, and I looked at what that stands for, and I'm not even going to read it because it jibberish it's medical stuff but it's just a feeding tube that--typically they go in through the nose called it's called an NG tube. But for Kimball, he was given an OG tube going through his mouth so just threaded in through the side of his mouth and then down his throat right into his stomach. And so that is a pretty rare thing for kids to have I think because it's less pleasant so that goes right in through your mouth and it's harder to keep in but he didn't have an NG tube because of his really narrow airway to begin with. And so he had an OG tube in the NICU....
Aug 27
37 min
12: 3 Fun Ways to Facilitate Language Development w/ Hearing Specialist Angie
Learn why these three everyday activities help children develop language and discover fun tips to tweak them in order to enrich your child’s access to language even more. Hearing specialist Angie works as an in-home therapist for the Utah School for the Deaf with the mission to give children with hearing loss access to language. Turns out the three most powerful tools are ones that apply to all children, typically hearing or not. Contact form for Season 1 takeaway: https://therarelifepodcast.com/contact For images, comments, full transcript, and more, visit the website: https://therarelifepodcast.com/show-notes/ep-12-3-fun-ways-facilitate-language-development-w-hearing-specialist-angie Books: Board Books by Sandra Boynton: https://amzn.to/38UEQfT Dr. Suess 4 Board Book Bundle: https://amzn.to/2Oo71KF Brown Bear by Eric Carl: https://amzn.to/2OrAeo5 The Very Busy Spider by Eric Carl: https://amzn.to/2OlqhbM From Head to Toe by Eric Carl: https://amzn.to/3gZH5kW Flap books: Where’s Spot? By Eric Hill: https://amzn.to/3fplyBE Dear Zoo by Rod Campbell: https://amzn.to/2CDe0gk Toys: Cargo Truck by Plan Toys: https://amzn.to/38UDS3j Baby Dolls by Melissa and Doug: https://amzn.to/3eqI7EJ Plastic balls, set of 50: https://amzn.to/3evqWC7 Vehicle Puzzles by Melissa and Doug: https://amzn.to/304A4Za Super Simple Songs (via YouTube): https://www.youtube.com/user/SuperSimpleSongs (also can be found on Spotify) Lego Duplos: https://amzn.to/2Zu5zNm Mr. Potato Head: https://amzn.to/3gZHtzU Building Blocks by Melissa and Doug: https://amzn.to/3fv0ud4 Plastic Animals: https://amzn.to/3h0evjf Wooden sensory balls by Plan Toys: https://amzn.to/32jJJxI TRANSCRIPT: Angie You'll always have that next milestone in mind. Celebrate the milestones that they're doing now and don't give up. Madeline Cheney Hi, you're listening to the rare life. I'm your host Madeline Cheney. And today we have episode 12. A little side note before we jump into the episode, I would like to invite all my listeners--special needs parents and others included--to share what you've thought of Season 1 so far and your favorite takeaway, which might be something you've been able to implement and had success with, a thought from a parent that resonated with you, or any kind of meaningful experience you've had with the episodes you've listened to in Season 1. Please do that in the form of a review on either iTunes or if you are not an iTunes listener, you can send it in through the contact form on my website, therarelifepodcast.com and I will put a link to that in the show notes... --- For the full transcript, visit the website.
Aug 20
31 min
11: Embracing Your Therapy and Medical Tribe w/ Kari Harbath
Do you totally love your child’s intervention tribe? Or do you see room for improvement in that department? Kari is an exceptional example of opening her heart and home to her tribe and is so inspiring. In this episode, she shares all about her deep love and appreciation for professionals that have come together for the good of her daughter. She also shares a few strategies she’s used to keep up with doing “all the things” that her tribe recommends. Shoutout to amazing therapists/doctors/nurses/specialists everywhere that support and love our children almost as much as we do. Book “Special” by Melanie Dimmitt: https://amzn.to/2AX4GDh Share a takeaway from Season 1 here: https://therarelifepodcast.com/contact
Aug 13
37 min
10: The Story of Sloan
Mom Kari gives us a glimpse into the world of her daughter Sloan who is profoundly deaf-blind and is tough as nails. Sloan has a clinical diagnosis of CHARGE syndrome, a rare disorder affecting various parts of the body. In this episode, Kari shares what life is like with the dual sensory loss, her birth story, and how her dreams for her daughter have shifted in meaningful ways. Kari and Sloan’s GoFundMe: https://www.gofundme.com/f/for-kari-and-sloan Answer August’s question of the month: https://therarelifepodcast.com/ July responses to question of the month: https://therarelifepodcast.com/q-of-the-month/appointment-day-hacks Sensory swing: https://amzn.to/3kbb7EE Check out the website for pictures, comments, the full transcript, and more. https://therarelifepodcast.com/show-notes/ep-10-story-sloan TRANSCRIPT: Madeline Cheney A quick update before we get to Episode 10. I have a message to read from Kari Harbath who I will chat with in this episode: "I'm saddened to say Aaron, Sloan's dad, passed away on June 2. This loss has been devastating for our family. And as you'll hear throughout the episode, Aaron's claim to fame will always be his amazing entry into fatherhood. Sloan is lucky to call him her dad. He was an extremely dedicated and loving father and we all love and miss him dearly." To Kari, Aaron, and Sloane, I'm shattered for your loss and in awe at the fierce love that you have for each other. You can support Kari and Sloan monetarily by donating to their GoFundMe. The link is in the show notes. And now let's continue on to the episode. Kari  0:00 Nothing has been very normal around here! But that's cool. It's cool. What is normal, right? Madeline Cheney  0:04 Hi! You're listening to Episode 10 of The Rare Life. I'm your host Madeline Cheney. And now that we are in August, we have a new question of the month. Thank you so much for everyone who contributed to July's question of the month. To see those answers, head over to the website, therarelifepodcast.com, there will be a link to that in the show notes. This month's question is: what has helped you follow through on advice from your child's therapist and medical team? One more time: what has helped you follow through on advice from your child's therapist and medical team? I love this question. It goes along very well with Kari's special topic episode which comes out next week. So head on over to answer that question. I'd love to hear your input. Today you get to listen in on my conversation with mom Kari. She is mother to Sloan, who just turned one. She has CHARGE syndrome, which is an acronym for the different birth defects that often comes along with that. In this episode, we mostly talk about Sloan's profound deaf-blindness, which is the most life altering birth defect that she has. We also talk about her birth story, and how her dreams for her daughter has shifted in awesome ways. And as a caution, her birth story does contain possible triggers. So proceed with caution. We met at a deafblindness parent conference. It was really great to connect with with her and her husband, and we even found out we have the same PT for our children....
Aug 6
43 min
9: 3 Tips for Taking Charge of Your Therapy and Medical Team
Take your rightful place at the head of your child’s care team and watch everyone benefit from it. Initially, parents often must surrender a lot of their control to experts when their child has extra needs. In this solo episode, I share my own evolution in owning my leadership role in my son’s intervention. I also detail strategies I’ve found helpful and revolutionary in really growing into the role of leader in his therapy team in a way that truly benefits my child. This includes simple things like calling your provider by name, minimizing the care team and tasks, and customizing goals to you and your child. This episode can be beneficial both to new and more seasoned parents, as well as therapists and medical professionals. Contact form for Season 1 takeaway: https://therarelifepodcast.com/contact Essentialism by Greg McKeown: https://amzn.to/3evRnrf For comments, images, full transcript, and more, you can visit the website. https://therarelifepodcast.com/show-notes/ep-9-3-ways-charge-your-therapy-and-medical-team TRANSCRIPT Madeline Cheney  0:00 "Now it feels more like they are educated advisors to me." Hi, you're listening to The Rare Life. Today I have a solo episode for you. I chose to talk about taking charge of your medical and therapy team. A little side note before we jump into the episode, I would like to invite all my listeners--special needs parents and others included--to share what you've thought of Season 1 so far and your favorite takeaway, which might be something you've been able to implement and had success with, a thought from a parent that resonated with you, or any kind of meaningful experience you've had with the episodes you've listened to in Season 1. Please do that in the form of a review on either iTunes or if you are not an iTunes listener, you can send it in through the contact form on my website, therarelifepodcast.com and I will put a link to that in the show notes. For the Season 1 finale episode in September I will read a few of these and respond. Alright, back to taking charge; Kimball has had many therapies in his short life, as far as he has had feeding therapy, physical therapy hearing specialist, a vision specialist, a deaf blind specialist, a developmental specialist, as well as tons of medical specialists. So, this is a huge deal to me. And I will kind of outline where I'm going with this you have a little roadmap. First I will talk about the evolution of my taking charge-ness and I have three tips for taking charge. I will talk about befriending your therapist and medical team, prioritizing, and letting them help you. So let's dive right in....
Jul 30
26 min
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