Rarely Familiar – Details, episodes & analysis

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

1. 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.

2. 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.

3. 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!

4. Phone Screening potential PCAs is key. Quick phone screening first will go a long way.

5. 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.

6. 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) 

7. Join PCA Connect Facebook Group in Minnesota, there are always people looking for work in that group.

Care.com

Chad Greenway’s Lead The Way Foundation (Tend Her Heart Luncheon)

Rare Disease Day

Center for Orphan Drug Research

Accra

Crescent Cove

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

1. Visit your local EMS

2. Start creating a printed binder in collaboration with your complex care physician (link to template to come)

3. Get a backup Power Solution for your home

4. 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

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:

Instagram

⁠⁠Facebook

⁠Rarely Familiar Website

⁠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:

Instagram⁠

⁠Facebook⁠

Rarely Familiar Website⁠

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:

Instagram⁠⁠

Facebook⁠

Rarely Familiar Website⁠

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

Disability Hub MN

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

Wishes and More

ABA Therapy 

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

HopeKids 

Ronald McDonald House 

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:

Instagram

Facebook

Rarely Familiar Website

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.

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  

Instagram: https://www.instagram.com/rarelyfamiliar

Facebook: https://www.facebook.com/RarelyFamiliar

Website: https://www.rarelyfamiliar.com

E-mail: info@rarelyfamiliar.com

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:

Instagram

⁠⁠Facebook

⁠Rarely Familiar Website⁠

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.

• TCRC Website

• TCRC @tcrcmn IG

• TCRC Facebook

  
  

Where to get an NeuroPsych Evaluation?

Fraser

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:

Instagram

⁠⁠Facebook⁠

Rarely Familiar Website⁠

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