Rarely Familiar (Rarely Familiar)
Explorez tous les épisodes de Rarely Familiar
| Date | Titre | Durée | |
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| 24 Mar 2025 | #16: The value of a great PCA | 00:33:31 | |
Episode 16: The Value of a great PCA (and how to find and retain them) After a brief hiatus over a busy cold/flu season 'Rarely Familiar,' hosts Jen and Haley are back to discuss the critical role of Personal Care Assistants (PCAs) for children with disabilities and complex medical needs, and how to find and retain them! They introduce their guest, Nikki Hayes, who shares her experiences as a PCA for Haley’s son, Felix. The discussion highlights the importance of flexibility, communication, and intuition in the caregiver role, providing insights into finding and retaining quality PCAs. Nikki also touches on the intrinsic satisfaction of her job despite its challenges, and shares the unique bond formed with Felix, including the discovery of his Synesthesia! The episode emphasizes the need for better connections between potential caregivers and families and potential strategies in the search for a perfect fit. NOMENCLATURE CORRECTION: In this episode, we incorrectly use the term “nonverbal” which is NOT the preferred terminology (we are still learning, your grace is appreciated). Our kids are verbal, however, they do not rely on speech alone to be fully understood (for example, Felix uses an adaptive augmentative communication device). PROTIPS
RESOURCES mentioned in this episode Chad Greenway’s Lead The Way Foundation (Tend Her Heart Luncheon) Center for Orphan Drug Research Special Thanks to: Nicki Hayes for being the world’s greatest PCA to Felix! Eli Brunelle for Intro and outro Music "New Love" (Eli has a show at the Green Room on April 30th, come check out his talent!) Todd Piper Hauswirth at All-Good for logo and brand identity Emily Rodvold and Lift-Creative for web design and development | |||
| 06 Oct 2024 | #11: Adult Changing Stations become Law in MN | 00:39:51 | |
In this episode of Rarely Familiar, Haley, alongside friends Tram and Jen delve into the transformative journey of turning citizen advocacy into enacted legislation. They are joined by guest Sarah St. Louis, who shares her inspiring experience of drafting and helping pass a bill into law mandating adult-sized changing tables in certain public spaces in Minnesota. The discussion highlights the importance of community involvement, telling personal stories, and legislative strategies to bring attention to often overlooked needs. Throughout the conversation, they emphasize perseverance and coalition building as critical components for enacting social change, demonstrating how individuals can start with a simple idea and transform it into impactful, inclusive legislation. Resources: How a bill becomes a law in MN Partners in Policymaking Find out who your Representative is (so easy, just plug in your zip code): https://www.gis.lcc.mn.gov/iMaps/districts/ Changing Spaces Campaign: https://www.changingspacescampaign.com/ Minnesota Changing Spaces Facebook Page https://www.facebook.com/profile.php?id=100089112933061 Stay Connected with Rarely Familiar: E-mail: info@rarelyfamiliar.com Special thanks to: Eli Brunelle for Intro and outro Music "New Love" Todd Piper Hauswirth at All-Good for logo and RF brand identity | |||
| 04 Oct 2024 | #10: Hope is Powerful Medicine | 00:37:17 | |
Empowering Families: Inside HopeKids Non-profit Organization and their fun programming for the entire family! On this episode of Rarely Familiar, Tram and her friends Jen and Haley explore the nonprofit organization HopeKids. They discuss personal experiences with their children's schooling challenges and the importance of HopeKids' support. Special guests Brianna Watke and Ariel Lindahl from HopeKids share insights into their roles, the organization's mission, and the broad definition of life-threatening medical conditions. The conversation highlights the variety of events HopeKids organizes, the importance of community, and personal stories of joy and connection. Additionally, the hosts emphasize the organization's positive impact on families dealing with rare medical complexities. Resources: Stay Connected with Rarely Familiar: E-mail: info@rarelyfamiliar.com Special thanks to: Eli Brunelle for Intro and outro Music "New Love" Todd Piper Hauswirth at All-Good for Rarley Familiar brand identity
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| 07 Sep 2024 | #4: CDCS, DD, WTF? | 01:01:51 | |
A fellow Minnesota mama, social worker and guru in the complex world of waivers and “the system” talks to us about where to start and how to navigate the complex nature of these programs. Navigating “the system” to find resources for children with disabilities and rare medical complexities can be daunting. On this episode of Rarely Familiar, co-hosts Haley, Jen, and Tram welcome guest expert Simone, a seasoned social worker and parent of a child with a disability. They share insights on accessing vital resources, the importance of early intervention, keeping detailed medical records, and how to navigate the different types of government waivers and resources available, such as PCA services, medical assistance, and the various state-specific waivers (PCA, CADI, and DD). The episode highlights the need for parents to identify their specific needs, seek proper evaluations, and leverage local and state resources. The episode serves as an invaluable guide for parents looking to understand and access the systems that can provide critical support for their children. Stay Connected with Rarely Familiar: E-mail: info@rarelyfamiliar.com Special thanks to: Eli Brunelle for Intro and outro Music "New Love" and Todd Piper Hauswirth at All-Good for logo and brand identity Links and Resources Early Childhood Special Education Help Me Grow Program (Birth to 3 years old): An early intervention program through a public school system made of teachers that would coordinate in home programming based on your child’s needs. Team of providers usually consists of a Special Education Teacher, Social Worker and possible other therapists. MN Department of Human Services Contact the Disability Hub to find out the best way to contact your county to discuss options for services Hennepin County Front Door at 612-348-4111 | |||
| 07 Sep 2024 | #7: Let's go! In a Plane | 00:34:17 | |
Plane travel nationally or internationally is a beast, but there are ways to make it MUCH easier! On this episode of Rarely Familiar, co-hosts, Tram, Haley and Jen, discuss the challenges and strategies of traveling by air with children who have rare and special needs. They share personal experiences, tips for packing specific medical supplies, and the importance of planning ahead with services like TSA cares and the Sunflower Program. The conversation highlights the need for detailed preparation and accommodations to ensure safe and stress-free travel, while also emphasizing the importance of creating cherished family memories despite the obstacles. Resources and suggestions for dealing with international travel, using DME services, and finding accessible accommodations are also provided. Stay Connected with Rarely Familiar: E-mail: info@rarelyfamiliar.com Special thanks to: Eli Brunelle for Intro and outro Music "New Love" and Todd Piper Hauswirth at All-Good for logo and brand identity Links and Resources mentioned in this episode ADA Tax Barrier Removal- Business Tax Incentive to do ADA accommodations TSA Care Request Form- Fill out the form one week in advance; usually call/text 3 hours if they can have someone assigned at airport. Each airport TSA cares support looks like for each airport Sunflower Hidden Disability Program at Airports Worldwide Changing Spaces Campaign Map- US national map of places that have adult size changing tables FAA Reauthorization Bill Passed - Small to large size airports to start adding in adult size changing tables Medicaid/Medical Assistance Insurance Info - Check on your health insurance policies as medicaid/medicare do not get covered across state lines. Exception is if you have life threatening emergency case and cannot get transported across state lines. International Travel Insurance Article: When traveling internationally we recommend understanding the various available insurance plans from independent 3rd parties vs the ones the airlines offer when buying tickets. There are aggregator sites to explore if you search for it. Contacting an agent at Traveler’s Insurance and to discuss your situation is what we recommend. Here’s Travelers site and you can see the coverage and get estimates. We did add a medical evacuation and repatriation bundle since we couldn't buy medical insurance. No sponsor or endorsements by Travelers Insurance we just used them in the past. Curb Free Cory - Cory is digital creator who is a wheelchair user and has insightful information on accessible travels. | |||
| 22 Dec 2024 | #15: Emergency Planning from a Rural Perspective | 00:39:43 | |
In this episode of Rarely Familiar, Haley and Tram discuss the crucial topic of emergency planning for families with children who have disabilities and medical complexities. They are joined by Morgan Klatt, a parent from rural Embarrass, Minnesota, who shares her experiences and insights on creating an emergency care binder, working with local EMS teams, and preparing for emergencies in a rural setting. Morgan talks about the importance of having a go bag, backup medical supplies, and building relationships with local first responders. She also offers practical tips for other families facing similar challenges. Tune in to learn how to unite, inspire, educate, and empower caregivers and parents living a Rarely Familiar life. Key Takeaways/Action Items
Special thanks to: Morgan Klatt for sharing her expertise and continued camaraderie Eli Brunelle for Intro and outro Music "New Love" Todd Piper Hauswirth at All-Good for logo and brand identity Emily Rodvold at Lift Creative for Web development | |||
| 07 Sep 2024 | #5: Swipe Right, then what? | 00:39:29 | |
Single moms talk about dating and how to navigate this complicated path when you have a child with medical complexity. On this episode of Rarely Familiar, Jen, along with her co-hosts, Tram and Haley, discuss the challenges of dating while raising children with medical complexities. They introduce guests Emily and Jill, both mothers of children with disabilities, who share their personal experiences and insights. The conversation delves into the struggles and considerations of balancing personal relationships with their demanding caregiving responsibilities. They share insights on the delicate process of disclosing your child’s disability early in dating, maintaining high standards in relationships, and the challenges of finding time to even date when full time caregiving demands so much of their time and energy. Emily shares her recent success in finding a supportive partner after years of being single, while Jill speaks about her continuous search and high standards in the ever challenging swipe left swipe right culture. The episode highlights the importance of supportive communities and the resilience required to manage both romantic and parental responsibilities. Stay Connected with Rarely Familiar: E-mail: info@rarelyfamiliar.com Special thanks to: Eli Brunelle for Intro and outro Music "New Love" and Todd Piper Hauswirth at All-Good for logo and brand identity | |||
| 01 Nov 2024 | #12: The Path to an Inclusive Playground | 00:41:34 | |
In this episode of Rarely Familiar, Betsy Julian, a teacher from Glen Lake Elementary shares the inspiring story of how a simple idea to add an accessible swing evolved into a massive project to build an inclusive playground. Initially aiming to raise $35,000, the project quickly grew to a $1 million effort, driven by the dedication and thoughtful planning of Betsy's students. The children considered various disabilities and requirements, ensuring the playground would be inclusive for everyone. Their hard work included grassroots fundraising, media involvement, and thoughtful design, resulting in an $860,000 playground that caters to all children, regardless of their physical abilities. The episode highlights the importance of inclusive play and the transformative power of community-driven projects. This story gained national media attention from the CBS Sunday Morning with Steve Hartman to the Kelly Clarkson show. Link to all info and media for the Glen Lake Accessible Playground Project Stay Connected with Rarely Familiar: E-mail: info@rarelyfamiliar.com
Eli Brunelle for Intro and outro Music "New Love" Todd Piper Hauswirth at All-Good for logo and brand identity | |||
| 07 Sep 2024 | #8: What is Palliative Care? | 00:43:47 | |
Not clear on what Palliative care is all about? You’re not alone. Get familiar with Dannell, a palliative care family advocate and clinician educator. In this heartfelt exchange, Rarely Familiar co- hosts Tram, Haley, and Jen, converse with Dannell Shu, a mother and palliative care advocate, who shares her profound knowledge and experience in palliative and hospice care. Dannell shares her personal journey with palliative and hospice care for her son Levi, who was born with severe brain damage and other medical challenges. The conversation covers the differences between palliative care and hospice care, the team-based approach involved, the importance of advance care directives, and the concept of concurrent care available through the Affordable Care Act. Dannell highlights her passage from a mother navigating her son’s medical complexities and his death; to becoming a palliative care advocate and educator. The episode aims to shed light on these critical topics, breaking down intimidating barriers for parents dealing with similar situations. Stay Connected with Rarely Familiar: E-mail: info@rarelyfamiliar.com Special thanks to: Eli Brunelle for Intro and outro Music "New Love" and Todd Piper Hauswirth at All-Good for logo and brand identity Links and Resources mentioned in this episode RedBird Dannell Shu’s website Want to hear more? Podcast with Dannell Shu and Palliative Nurse What you should know about palliative care one pager English & Spanish https://getpalliativecare.org/handouts-for-patients-and-families/
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| 28 Aug 2024 | #1: What is Rarely Familiar? | 00:26:48 | |
Tram, Haley and Jen share the story of how they met, a brief intro to their kids and their hopes and dreams for Rarely Familiar. In this debut episode of Rarely Familiar, co-hosts Jen, Tram, and Haley share their unique experiences raising children with disabilities and rare medical complexities. They discuss how they met, the journey that led them to start the podcast, and their goals for creating a supportive community. The episode also provides personal stories about their children, highlighting the challenges and joys that come with being 'rare' parents. The trio emphasizes the importance of connection, resource sharing, and finding moments of laughter amidst the hardships. Links and Resources
Facebook: https://www.facebook.com/RarelyFamiliar Website: https://www.rarelyfamiliar.com E-mail: info@rarelyfamiliar.com | |||
| 05 Dec 2024 | #14: Danny's Dose Changes EMS Protocols | 00:44:10 | |
In this episode, Tram and Haley delve into the critical work of Danny's Dose, a non-profit founded by Darlene Shelton. The organization aims to reform EMS protocols for administering time-critical medications during life threatening emergencies. Featuring insights from Darlene and Andrea Nelson, the episode explores their personal stories, legislative achievements, and practical tips for preparedness. Listeners will learn about the successes and ongoing challenges in enhancing emergency care for patients with rare diseases. Did you know if you or your child is one of the 400,000 people (just in MN) across 13 different conditions that need life-saving meds in the case of emergency, your local EMT may not know how they are now able to use them to save you or your child’s life?! “Everybody needs to realize that at that moment, they [paramedics] have to decide between doing what they know in their heart is right and taking the chance that their entire livelihood could go straight down the drain. And that's a hard decision. So we really truly fight as much for every paramedic out there and really every medical director to make sure they're protected to allow the regulations within their service to be changed so that they are protected and they can do the right thing.” Key Takeaway: Step 1: If everybody that hears this message will get in your car and go meet your local EMS service this will bring much needed awareness for your condition for other conditions with this critical need. Step 2: If your state doesn’t have a regulatory change in place to administer these meds, Call Darlene–get started! Stay Connected with Rarely Familiar: E-mail: info@rarelyfamiliar.com Special thanks to: Eli Brunelle for Intro and outro Music "New Love" Todd Piper Hauswirth at All-Good for logo and brand identity
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| 04 Sep 2024 | #3: Our Glass Children | 00:32:26 | |
A talk with two teenagers about their experience growing up with a medically complex brother. On this episode of Rarely Familiar, hosts Jen and Haley chat with Makai and Eli about their unique experiences as older brothers to their siblings with disabilities, Julian and Felix. These two thoughtful teens share their personal perspectives and get honest about what life looks like for them now and when their sibling was born. We dig into the differing family dynamics, the concept of “glass children,” and the trials and rewards that come with having a sibling with medical complexities. Both Makai and Eli describe how these experiences have shaped their characters, offering insights into the challenges and growth opportunities that arise in such family settings. Stay Connected with Rarely Familiar: InstagramFacebookRarely Familiar WebsiteE-mail: info@rarelyfamiliar.com Special thanks to:Eli Brunelle for Intro and outro Music "New Love"Todd Piper Hauswirth at All-Good for logo and brand identity | |||
| 07 Sep 2024 | #6: Let's go! In a Car | 00:31:14 | |
Traveling is hard, let’s talk about how we can make it easier when you travel by car. On this episode of Rarely Familiar, co-hosts Tram, Haley, and Jen explore the intricacies of traveling by car with children who have disabilities. They share personal experiences, insights, and practical advice on preparing for trips, packing essential supplies, and ensuring accessibility and safety. The discussion covers various aspects, such as the importance of planning ahead, the essentials of finding appropriate lodging via Airbnb or VRBO, and the use of accessible travel resources. They also emphasize the value of travel despite its difficulties and encourage families with rare medical complexities to seize the opportunity to travel. Stay Connected with Rarely Familiar: E-mail: info@rarelyfamiliar.com Special thanks to: Eli Brunelle for Intro and outro Music "New Love" and Todd Piper Hauswirth at All-Good for logo and brand identity Links and Resources mentioned in this episode Changing Spaces Campaign - Universal Table Map Car Cabana- There are many other styles similar to this style. Curb Free with Cory Lee - Cory is digital creator who is a wheelchair user and has insightful information on accessible travels. | |||
| 07 Sep 2024 | #9: ¡Bienvenido a México! | 00:21:55 | |
Yes you CAN travel internationally, here’s proof. In this fun episode of Rarely Familiar, Haley is in Mexico and connects with her fellow co-hosts, Tram and Jen, who are stuck in chilly Minnesota, to share her recent trip to visit her mother in Puerto Vallarta, with her medically complex son, Felix. Haley offers practical and real life advice on traveling solo with her son and the importance and challenges of packing and planning for an International trip and utilizing the support systems available such as TSA Cares, wheelchair assistance, and other accessibility services to ease the travel process. The trio discusses practical tips like using medical packing lists, medical documentation notes, and Apple Air Tags to keep track of important items. The episode emphasizes that, despite the stress, the effort to travel is rewarded by enriching experiences and family connections. Stay Connected with Rarely Familiar: E-mail: info@rarelyfamiliar.com Special thanks to: Eli Brunelle for Intro and outro Music "New Love" and Todd Piper Hauswirth at All-Good for logo and brand identity Links and Resources mentioned in this episode Airline Passengers with Disabilities Bill of Rights (PDF version)
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| 17 Nov 2024 | #13: What is ABA Therapy? | 00:47:48 | |
Benefits, Controversies, and Success Stories of Applied Behavioral Analysis (ABA) Therapy. In this episode of Rarely Familiar, hosts Jen, Tram, and Haley delve into the intricacies of ABA therapy, featuring guests Obsa Mohamed, owner of Twin Cities Recovery Center (TCRC), and Claire Friedman, a board-certified behavior analyst. The episode covers personal stories, success stories of children benefiting from ABA therapy, and an in-depth look at the processes and principles behind ABA. The discussion also addresses common misconceptions, the importance of tailored treatment plans, and practical insights for parents seeking ABA therapy for their children. Whether you are a parent, educator, or someone interested in understanding ABA and its impact, this episode offers valuable information and heartfelt anecdotes. Tune in to learn more about supporting children with autism and other developmental challenges through ABA therapy. Where to get an NeuroPsych Evaluation? List of Eligible Providers Credentials on Department of Human Services Website More Info on Neuropsych Evaluations on Department of Human Services Website Stay Connected with Rarely Familiar: E-mail: info@rarelyfamiliar.com Special thanks to: Eli Brunelle for Intro and outro Music "New Love" Todd Piper Hauswirth at All-Good for logo and brand identity | |||
| 04 Sep 2024 | #2: Who’s your daddy? | 00:40:08 | |
Two dads talk about their experience raising a medically complex child. Rarely Familiar co-hosts Jen, Tram, and Haley delve into the realities of parenthood from a father’s perspective. Tram and Haley introduce their husbands, fathers to Sadie and Felix, and discuss their personal journeys raising children with rare medical complexities. The show covers recent Father's Day celebrations, the emotional and practical challenges faced by these fathers, their support networks, and their evolving perspectives on fatherhood. Both Tim and Shaun share heartfelt advice for new dads in similar situations, emphasizing the importance of support systems, self-care, and staying curious. Their thoughtful and honest thoughts, offers an honest glimpse into the unique experiences and resilience of parents navigating life with medically complex children. Stay Connected with Rarely Familiar: E-mail: info@rarelyfamiliar.com Special thanks to: Eli Brunelle for Intro and outro Music "New Love" Todd Piper Hauswirth at All-Good for logo and brand identity Resources Mentioned in the Episode: Crescent Cove: Respite and Hospice home for kids Epilepsy Foundation (Parent Support Group Meet ups) Family Voices (Parent Support Groups) https://familyvoicesofminnesota.org https://www.marcopolo.me App used to help stay connected, we like to think of it as Video e-mail. | |||