When the phone rings during a school day, every parent’s heart skips a beat. For Jen, that call marked the beginning of a harrowing journey—one that would test her family’s resilience, the limits of medical science, and the power of community. In this episode of Rarely Familiar, we dive deep into Julian’s story: a sudden medical emergency, a whirlwind hospital stay, and the long, uncertain road to recovery.
A Day That Changed Everything
It started like any other Monday, but quickly spiraled into crisis. Julian, a vibrant teenager with a rare genetic condition, was suddenly unresponsive at school. Jen rushed to his side, only to find him unable to move or communicate. The next hours were a blur—speeding to Children’s Minnesota hospital, a flurry of doctors and nurses, and the terrifying realization that no one knew exactly what was wrong.
Julian’s condition deteriorated rapidly. He suffered paralysis, seizures, and brain swelling. The medical team consulted experts across the globe, but answers were elusive. As days passed in the PICU, Jen and her family faced the unthinkable: emergency brain surgery to save Julian’s life.
The Long Road to Recovery
After a successful craniectomy, Julian’s journey was far from over. He spent months in rehab at Gillette Children’s, relearning how to walk and reclaiming his independence. The family navigated the complexities of FMLA, short-term disability, and the emotional toll of crisis. Through it all, they discovered the importance of self-care, documentation, and clear communication with medical teams.
Julian’s story is one of hope. Against the odds, he walked out of the hospital three months later—smiling, laughing, and ready to embrace life again.
CaringBridge Website to post updates and share CaringBridge links on social media. Direct friends and distant family to post comments there and hold on texting so that text messages can be utilized for crisis management. Julian’s CaringBridge as an example.
Utilize pictures to showcase your child. A picture is worth a thousand words, by creating a photo board it shows your child’s baseline and humanizes them.
Practice saying “yes” to those offering you help (watering your plants while you’re away, bringing you dinner, cleaning at your house)
Seizure Action Plan: Be explicit with school or anyone who is caring for your child about their Seizure Action Plan and usage of seizure rescue medicine protocol. Advise to call 911 immediately then contact the parent; atypical presentations still warrant an action. Call 911 early if something is clearly off or atypical for your child.
Notetaking: Buy a big notebook for the hospital and leave it in the room to jot down notes, ideas, questions, and can act as a resource during a period when sleep deprivation does not help with remembering what the doctors/therapists discussed with you.
Ronald McDonald House is there for a reason––use it! Inpatient Resources: Meals both sit-down and on-the-go, rooms, other amenities, if available at your location.
Protect your job and income (U.S.)
Tell your manager early (“My child is inpatient; I will be unavailable. I’ll share a contact for urgent needs.”)
Use PTO first, then FMLA (up to 12 weeks of job protection)
Short-term disability (through employer or state, if applicable) may cover a portion of your income when your own health/mental health makes work impossible during the crisis. A brief note from a clinician can help.
Special Thanks to:
Jennifer and Julian for sharing their story
Eli Brunelle for Intro and outro Music "New Love"
Todd Piper Hauswirth at All-Good for logo and brand identity
Emily Rodvold at https://lift-creative.com/ for Web Design and Development
This episode welcomes guest Melissa Winger, author of 'Who Cares?', who shares her journey and insights on advocating for compassionate healthcare systems. The discussion highlights personal experiences, systemic issues, and valuable advice for parents and caregivers. Whether you're navigating similar paths or seeking to understand these experiences, this conversation offers support, laughter, and inspiration.
Purchase 'Who Cares? The real patient experience' here.
Melissa’s book seamlessly weaves personal narratives with national healthcare issues, providing a beacon for those feeling isolated in their battles. The conversation reveals that Melissa embarked on this writing journey to fill a gap she noticed: a cohesive narrative that combines personal journey and systemic data. Her meticulous research underscores the broader issues affecting families across America.
Jen brings to light a poignant part of Melissa’s journey – the relentless pursuit of advocacy. Despite Melissa’s conflict aversion, when her son was wronged, her determination ignited a fierce drive to protect and advocate for change. The group discusses the complexities of navigating healthcare systems and the painstaking steps Melissa took to ensure better outcomes for others like her son.
The conversation shifts to a critical topic for parents of children with disabilities: planning for their future as adults. Melissa shares her thoughtful decision-making process in transitioning her son to a group home, illustrating the delicate balance between independence and safety. This part of the discussion resonates deeply with the hosts, each envisioning their own children’s futures.
Melissa’s parting advice is profound in its simplicity: cherish the moments with your children and find joy amidst the challenges. By balancing the demands of caregiving with personal joy, parents can cultivate resilience and joy, both for themselves and their children.
In closing, the conversation with Melissa Winger is a powerful reminder of the impact one can have through perseverance and advocacy. By sharing candidly about her experiences, Melissa is not only advocating for systemic change but also offering a lifeline to parents navigating similar journeys. Her story encourages us to listen, to act, and most importantly, to find joy along the way.
If Melissa’s story inspired you or if you have insights to share, join the conversation at rarelyfamiliar.com or connect with us through our social media channels. We are committed to bringing discussions that illuminate the path to successfully living with rare medical complexities. Stay tuned for our next episode.
TIPS for Caregivers:
If you are even CONSIDERING a group home placement, put your name on a list of all group homes of interest in your area 2-3 years in advance. Due to labor shortage and housing codes restrictions in some cities, it’s difficult to get into a group home. In Melissa’s case, it took 3 years before she was able to get placement for her son.
RESOURCES
Disability Hub MN: A free statewide resource network for people with disabilities and their families. Call 1-866-333-2466 for assistance.
Housing Benefits 101 (HB101): A website from the Department of Human Services with information on housing options and public assistance programs, including Housing Support.
The Arc Minnesota: A non-profit that provides information and advocacy on housing issues. Contact them at 952-920-0855 or toll-free at 833-450-1494.
Minnesota Department of Human Services (DHS): The licensing body for Adult Foster Care. Search their website for providers.
Minnesota Department of Health (MDH): The licensing body for Assisted Living facilities. Search their website for providers.
Exploring the Highland Friendship Club with Patty Dunn. In this episode of Rarely Familiar, hosts Haley, Jen, and Tram are joined by Patty Dunn, Executive Director of Highland Friendship Club (HFC). Patty shares insights on HFC's inclusive programs that foster friendships and skill-building among teens and adults with disabilities. The hosts and Patty discuss the importance of community, including impactful events like the Really Big Game and stories of inspiration from Gillette Children's Hospital. This episode highlights the power of starting small to create supportive communities for people with disabilities.
Resources/Links
Joe & Bill’s Lemonade Stand for Gillette Children’s
Patty Dunn - Linkedin
Learn more about The Really Big Game on August 7, 2025!
The Really Big Game Video
Stay Connected with Rarely Familiar:
E-mail: info@rarelyfamiliar.com
Special thanks to:
Patty Dunn, Executive Director Highland Friendship Club
Eli Brunelle for Intro and outro Music "New Love"
Todd Piper Hauswirth at All-Good for logo and brand identity
Emily Rodvold at https://lift-creative.com/ for Web Design and Development
In this episode of Rarely Familiar, hosts Jen, Tram, and Haley welcome the one and only, Sheletta Brundidge, an Emmy award-winning comedian, radio host, and activist. Sheletta shares her incredible journey of raising four children, three of which are diagnosed with Autism Spectrum Disorder (ASD). We discusses her initiatives to support families with autistic children, such as providing combination locks to prevent elopement and hosting the first autism job fair in Minnesota. She emphasizes the power of community and faith, and inspires the hosts to act on their ideas without overthinking. The episode is a blend of humor, heartfelt stories, and practical tips to live life successfully!
RESOURCES
The children’s books we mentioned by Sheletta can be found at local Public Libraries in the Twin Cities, Red Balloon Books, Barnes & Noble and Amazon.
Sheletta Makes Me Laugh website
Connect with Sheletta on LinkedIn
The Minneapolis Lake Street Historic Coliseum Building
SheLetta’s Daily NewsLetta: Get Your Happy Back
Bus Stop Mama’s - Shine a light on her, Mama’s Parade
Spread Love with Locks Campaign
TIPS AND TRICKS
”You can’t be depressed and strong” TRUTH, sister! If you are wallowing in self-pity, still feeling like a victim or even in survival mode, you aren’t in a place to advocate or lift others up. Giving has to come from a place of joy and abundance and if your’re not there or you can’t see a pathway out, surround yourself with folks that can, they’ll guide you! We’re not always in maintenance mode, sometimes we get depressed and that is just a part of the highs and lows of raising rare. But when we’re down we need to know where to turn to dig ourselves out.
”Get out of the boat” There is nothing Sheletta is doing that we all can’t do too. If she says we can walk on water, we’re going to believe her! This was the boost we needed to start executing on the long list of ideas we have in store for this community.
Stay Connected with Rarely Familiar:
E-mail: info@rarelyfamiliar.com
Special thanks to:
Sheletta Brundidge, Boss Lady at ShelettaMakesMeLaugh.com
Eli Brunelle for Intro and outro Music "New Love"
Todd Piper Hauswirth at All-Good for logo and brand identity
Emily Rodvold at https://lift-creative.com/ for Web Design and Development
Navigating the complex journey of raising children with medical complexities requires not only emotional and physical resilience but also a strategic approach to financial planning. In our latest episode of "Rarely Familiar," hosts Jen, Tram, and Haley delve deep into the financial considerations crucial for families raising children with complex needs. Joined by Genevieve Cornish, a financial representative from Northwestern Mutual, we open up about the challenges and opportunities in financial planning, sharing valuable insights on building a future that secures both the child's and the family's well-being.
Genevieve Cornish brings a wealth of personal and professional experience to the table. As a mother of a neurodivergent teen, she knows firsthand the unique demands placed on families within the disability community. Her mission is to provide lifelong financial planning support to special needs families (see disclaimer below) and their support networks, ensuring that these families can envision a secure future for their loved ones.
A crucial takeaway from our discussion with Genevieve is the importance of having a knowledgeable financial advisor who understands the intricacies of special needs planning. Unlike typical financial advisors, Genevieve's practice is tailored to meet families exactly where they are, whether they are just starting their journey or are well-versed in managing complex needs.
In addition to offering advice on saving and planning, Genevieve emphasizes the value of building a team of professionals who can provide comprehensive support. This includes an estate planning attorney, CPA, government benefits expert, and, when necessary, a corporate trustee. The collective expertise of these professionals can help families navigate legal and financial complexities while safeguarding access to essential benefits.
For families facing the daunting task of financial planning alongside the daily realities of raising children with special needs, Genevieve offers reassurance and actionable steps. The journey begins with reaching out and having a discovery meeting—a meaningful first step that involves listening, understanding, and assessing the family's immediate and future needs.
Our conversation with Genevieve Cornish underscores the significance of strategic financial planning in the special needs community. With the right guidance and support, families can feel empowered to make financial decisions that secure their children's futures and provide peace of mind.
Important Disclaimer: We understand the term “Special Needs” is considered disrespectful to the disability community, however, we chose to leave it in this episode due to the nature of the terminology currently utilized for these specific financial accounts.
It’s important to find a knowledgeable financial advisor who understands the intricacies of special needs planning
It’s critical to build a team of professionals who can provide comprehensive support. This includes an estate planning attorney, CPA, government benefits expert, and, when necessary, a corporate trustee.
You can and should visit this topic of financial planning whether you are just starting on this journey of raising a medically complex child or you are already well-versed in managing your child complex needs, being aware of the financial aspects that are present for the full journey.
The first step begins with reaching out and having a discovery meeting—a meaningful first step that involves listening, understanding, and assessing the family's immediate and future needs.
Regardless of where you are financially, you can be met exactly where you are on your journey.
RESOURCE LINKS
Northwestern Mutual/Genevieve Cornish direct link to website
Special Needs Checklist at Northwestern Mutual
Connect with Genevieve Cornish in LinkedIn
Curbfree with Cory Lee: “How to travel the world in a wheelchair” by Cory Lee
In this episode, hosts Haley, Tram, and Jen discuss family engagement in medical research at Gillette Children's Hospital, with guest Dr. Rhonda Cady, a researcher, and mentor to Haley. Rhonda explains the concept of Family Engagement in Research (FER), emphasizing the need to include families and individuals with lived experiences in the research design process. They discuss the benefits, challenges, and the impact of involving lived experience partners in medical research. The episode underscores the significance of utilizing the expertise of those directly affected by medical conditions to improve and shape future research and healthcare services.
***
Have you ever thought, I wish I could help the medical world with my insights of living with this condition?
You don’t have to know anything about medical research to qualify, your lived experience auto-qualifies you to give valuable insight to inform and design medical research. If matched to a project, Gillette will train you to have an equal seat at the table and form authentic relationships with research scientists and clinicians. Getting Involved in FER as a person with lived experiences will connect you with researchers, scientists, and other medical personnel on the cutting edge of medical research.
If you are really invested in this work, consider signing up for a 10-week FER course microcredential from McMaster university in Canada. There are scholorships available for people with lived experience in complex medical conditions.
Rhonda’s profile:
Learn more about FER @ Gillette
Learn more about FER in General
Stay Connected with Rarely Familiar:
E-mail: info@rarelyfamiliar.com
Special thanks to:Rhonda Cady, PhD, RN
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 Design and Development
In this episode of Rarely Familiar, Jen and Haley delve into the inspirational works of the Wishes & More organization with special guest Karla Blomberg, founder and volunteer president. They discuss the impactful facets of the organization which grants wishes to children with terminal and life-threatening illnesses. From advocating for disability rights to memorable wish stories and the heartwarming experiences behind each fulfillment, this episode highlights the joyful ripple effect these wishes create in the lives of the children, their families, and the community.
“We can’t change the outcome, but we CAN create joyful memories and experiences” --Karla Blomberg
PROTIPS:
What to know before calling Wishes & More
1. Qualifications: A child with a terminal or life-threatening condition (as diagnosed by a physician) that is between the ages of zero-19 and lives in Minnesota OR who is treated in Minnesota.
2. They do not supply medical equipment.
3. There is a wish interview with the child. There are 5 categories all wishes fall under and they explore all of these. I wish I could…..
Be
Go
Have
Meet
Give
4. Each child/family will submit three wishes, and one of them will be granted.
5. No kid is denied one of their wishes.
6. If you child doesn’t communicate in ways most people understand, a parent and a referring medical personnel can help define what might make the most sense for that child.
7. A doctor must approve/authorize the wish to make sure the child is medically sound for the particular wish.
Resources:
Connect with Wishes & More | Instagram, Facebook | Linktree
Haley’s Family on MPR Politics Friday (their section starts at 2:45)
Julian’s Presentation
Gabe’s story (WBL wrestler)
Andy’s Trackchair
Stay Connected with Rarely Familiar:
Instagram
Facebook
Rarely Familiar Website
E-mail: info@rarelyfamiliar.com
Special thanks to:
Karla Blomberg, Volunteer President of Wishes & More
Eli Brunelle for Intro and outro Music "New Love" he has an album release at the Green Room April 30th, come check out his talent!
Todd Piper Hauswirth at All-Good for logo and brand identity
Emily Rodvold at Lift Creative for Web Design and Development
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 share some strategies on how to find and retain them. They introduce their guest, Nicki 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. Nicki 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
Get in the system, fill out the paperwork—it’s worth it! It is very likely, if you have some sort of rare disease diagnoses, you qualify. If you don’t know if you qualify call …. Disability hub, they’ll point you in the right direction depending on your county.
CONTROL THE HIRING, BE THE “RESPONSIBLE PARTY” PCA Choice program is the way to go. I would never trust anyone else to hire someone for my kid.
FAMILY is a good place to look, but if that isn’t possible Care.com and local colleges/universities with medical, nursing or therapy programs. They could gain valuable experience and you could gain some great Summer help—WIN WIN!
Phone Screening potential PCAs is key. Quick phone screening first will go a long way.
Know your nonnegotiables. Examples: mention any pets, identify right away where you live and if they are willing to travel that far, do they have reliable transportation? do they agree to follow your house rules, such as masking when sick? Ask those questions upfront and then get into everything else. You’ll save yourself a lot of time. People don’t read all the details.
Don’t mention right away you’re looking for PCA. Seed that conversation AFTER you know you want to work with them. It is easy to get certified, it’s just the application process through your Fiscal Agent (i.e Accra, etc)
Join PCA Connect Facebook Group in Minnesota, there are always people looking for work in that group.
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
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
Visit your local EMS
Start creating a printed binder in collaboration with your complex care physician (link to template to come)
Get a backup Power Solution for your home
Stock up on supplies
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
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
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
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
Special thanks to:
Eli Brunelle for Intro and outro Music "New Love"
Todd Piper Hauswirth at All-Good for logo and brand identity
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
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
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)
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/
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.
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.
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
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
