This odyssey of parenting, caregiving, and disability can be so many things: isolating, overwhelming, joyous, lonely, full, exhausting, exhilerating. The extreme ups and downs; the highs and lows. You can't fully understand it unless you live it. 

This episode explores why professional family to family support is so critical - so peers with lived experience can give us the information and empathy we so desperately need. We also celebrate the many accomplishments of our Center for Family Involvement staff, and share how their work is changing lives. 

The Odyssey: Parenting. Caregiving. Disability. 

The Center for Family Involvement at VCU School of Education's Partnership for People with Disabilities provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you. 

 

SHOW NOTES: 

Nickie Brandenburger is the Director of the CFI's Family to Family Network. 

More about I'm Determined.

Interview with I'm Determined founding member Dr. John McNaught. 

More about the sibling perspective. 

Lisa Richard is the CFI's Regional Network Coordinator for Southwest Virginia. She is also the Rural Outreach Specialist. 

Lisa is also a part of the Genetic Navigator Program. 

More about Carilion which Lisa mentioned.  

River's Way is the community organization that Lisa's children find benificial.

Lisa was a guest on the podcast back in May, sharing her experiences as a parent, advocate, and person.  

Jen Reese is the Regional Network Coordinator for Northern Virginia and part of the Genetic Navigator Program. 

The STXBP1 Disorders website features the lattest on the condition as well as the FDA recording that Jen participated in.

A podcast on the diagnostic odyssey one mother faced for her child's rare genetic condition.  

Parenting Special Needs feature on transitioning to the empty nest. 

Mauretta, Edgar, Lisa, and Patrice are all part of the CFI's Cultural Broker Initiative

Elderhood and Aging Families. 

 

 

TRANSCRIPT:

 

01:00:07 :21 - 01:00:37 :14

Erin Croyle

Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle, the creator and host. The Odyssey podcast explores the turn our lives takes when a loved one has a disability. I joined the club, so to speak, when my first child was born with Down's Syndrome in 2010. Arlo didn't just make me a parent. He transformed me into an advocate for all people with disabilities.

 

01:00:37 :20 - 01:01:05 :11

Erin Croyle

He was also the catalyst for a major career shift. I joined the Center for Family Involvement at VCU's, Partnership for People with Disabilities, a few years after he was born. Utilizing my journalism and television producer background as a communications specialist, it's some of the most meaningful work I've ever done because we provide emotional and informational support to people with disabilities and their families.

 

01:01:05 :13 - 01:01:36 :22

Erin Croyle

People like me, my husband Arlo, and his amazing, gorgeous, younger siblings. I know how important this kind of support is because even though I provide it, I need it too, because I'll never forget how devastated and lost I was sitting next to my son while he was in the Negro. Because I'll forever be on this roller coaster of medical mysteries, decoding behaviors, waves of grief, caregiving, fighting, embolism, advocacy and all of the things.

 

01:01:36 :24 - 01:02:03 :05

Erin Croyle

The beauty of the Center for Family Involvement is that every staff member and volunteer gets this because they live it too. Everyone at the CFI has a loved one with a disability. At the same time, we're rich in diversity, culturally, socioeconomically, generationally, education really and so much more, including the many disabilities, were not eligible for our final podcast of 2023.

 

01:02:03 :07 - 01:02:29 :08

Erin Croyle

We're celebrating the Center for Family involvement by sharing what exactly it is we do all day, why we do what we do, and why this work is so important. We start with the director of the CFI Family two Family Network, Nickie Brandenburger. Nickie, I'm so glad you're here. You came to CFI in 2015 after working as a service coordinator for nearly two decades.

 

01:02:29 :10 - 01:02:38 :19

Erin Croyle

Can you tell us how you ended up with the Center for Family Involvement and how your professional and lived experiences have informed your work?

 

01:02:38 :21 - 01:03:02 :11

Nickie Brandenburger

So I am a special education teacher by trade. I went to college with the intent to be a special ed teacher end of my college career. I was having a difficult time thinking about being within the four walls of a classroom. I was really fascinated and couldn't stop thinking about what was happening when that child got off the school bus.

 

01:03:02 :11 - 01:03:33 :22

Nickie Brandenburger

At the end of the day and went home. What was their family life situation like? Who were those other people that were involved in their life? What happened after graduation? During the summer, when school sessions not end, I could not stop thinking about life outside of the school system for families that are raising children with disabilities. So I sort of shifted gears and got a job right out of school at 22, working with a community services board in Lynchburg, Virginia, providing what's called support coordination.

 

01:03:33 :23 - 01:04:04 :14

Nickie Brandenburger

Back then, the phrase was case management, basically providing support to families of children and adults with developmental disabilities. So I did that for about 21 years. Was exposed to so many different types of families, different dynamics. And it was I love the work. About 11 years into the work, I became a mother and I had my son Thomas, in 2005 and perfectly normal pregnancy and delivery.

 

01:04:04 :14 - 01:04:31 :02

Nickie Brandenburger

But around th