Best of 2023

The Odyssey: Parenting. Caregiving. Disability.

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 three months we started to notice, you know, something was a little off and he was having difficulty feeding and eating. He started to he stopped gaining weight. And I can remember taking him to the pediatrician because he was refusing to nurse and wasn't sleeping well. And something was off. And I remember looking over the physician shoulder to the notes that he was writing, and I saw the term failure to thrive.

01:04:31:02 - 01:04:51:17

Nickie Brandenburger

And I thought, my gosh, what does this mean? So that kind of began us trying to find diagnosis and what exactly was happening with him and with Thomas. It was hard. You can't really label it with one thing. There were a lot of little things that kind of combined made things more difficult for him. Around 18 months, he really didn't have language.

01:04:51:19 - 01:05:16:15

Nickie Brandenburger

He would go from 0 to 10 really quickly, biting, difficulty sleeping. So we were assessed by our local community Services Board in Henrico County, and he qualified for early intervention. They determined that he had some sensory processing issues and just a global greater than 25% delay. And that's sort of kind of how you begin to access early intervention services.

01:05:16:15 - 01:05:38:11

Nickie Brandenburger

And at the time, you know, I was very overwhelmed and I can definitely remember being confused about what my next steps were. But I was pretty tough on myself in that I was suddenly accessing services from a service delivery system that I'd been a part of for 11 years. And suddenly I was wearing this parent hat and it was very uncomfortable for me.

01:05:38:12 - 01:06:00:20

Nickie Brandenburger

You know, there were professionals that were trying to support us in our early intervention journey with our son that knew me, you know, as a professional. And suddenly I was a parent, too. And I didn't know how to handle that and process it at the time. So, you know, now that my son is 18, I can look back and acknowledge and say that there was definitely a little bit of shame and maybe some embarrassment.

01:06:00:20 - 01:06:23:11

Nickie Brandenburger

And I didn't know how to articulate that. So that probably resulted in making it harder for myself than it really had to be, because I was trying to process exactly what was happening. And I think there's something to be said about parents if you're blissfully clueless about disabilities. But I knew enough to make it a little scary, so that was pretty tough for us.

01:06:23:11 - 01:06:48:16

Nickie Brandenburger

So I had great support from friends and family. My husband and I benefit from having family members that are in the field. My husband is a public school educator. His sister is a special education teacher. My mother in law's occupational therapist, father in law is a physical therapist. My brother's wife is a special ed teacher and has a brother with Down's syndrome, you know.

01:06:48:18 - 01:07:05:10

Nickie Brandenburger

So we had all of these family members and professionals kind of around us that knew. So there was a lot of support, but I was definitely hard on myself. So fast forward to, you know, 2015 and I was actually when I found out about the job at the Center for Family Involvement, I wasn't looking for a job change.

01:07:05:11 - 01:07:25:06

Nickie Brandenburger

I was happy where I was, but I was trying to find resources for a family that I was supporting and I was trying to find some resources for them, Other parents that had children with disabilities that were also Latino. And so I kind of came across the website. I knew about the Partnership for People with Disabilities. I didn't know specifically about the Center for Family involvement.

01:07:25:08 - 01:07:58:12

Nickie Brandenburger

So I kind of fell upon the website and saw I notice about a job position and I read the job description and the director for family, the Family Services, and I thought, my gosh, I could do this. This is a perfect way to sort of marry my two very specific experiences. Being a professional in the field and supporting so many families over the years that had children with disabilities and then suddenly being a parent, accessing supports and advocating for my son and I could marry those two together into one.

01:07:58:12 - 01:08:00:14

Nickie Brandenburger

And so I applied and I got the job.

01:08:00:16 - 01:08:27:06

Jen Reese

I find it so strange that we've worked together for so long, and I didn't know the many details of what I like to call origin story. I can't help but think because of all the families we help and we talked to after you had your son. How did that change your perspective of the work you did in your CSB?

01:08:27:07 - 01:08:51:16

Jen Reese

Because I know that for me and so many other parents, it seems these are great. Everyone in early intervention was was great, but they also didn't have all the information that you need because it's just not part of their scope of work. And so here you are on the tightrope of both. So how did your perspective change?

01:08:51:18 - 01:09:22:20

Nickie Brandenburger

That's a really good question. So the first couple of years, because I can admit now that there was some embarrassment and shame and I was still processing all of it. I don't know if it affected me that much, but eventually I do think it helped me to be so much more empathetic to what families were going through. I could stand in their shoes for a bit right, if you will, when I would attend IEP meetings for families to help support them, and the mothers would get emotional talking about the needs their children have.

01:09:22:22 - 01:09:42:16

Nickie Brandenburger

I would get emotional with them because I could relate so much, but I have this story, so I think my son was probably about six or seven. It was just before I came to CFI and I was working with a family, a mother who had a son with Down syndrome. And at the time her son was probably three or four and we had become really close.

01:09:42:16 - 01:10:04:03

Nickie Brandenburger

This mom and I and I would visit them every three months and, you know, and get to know her son and advocate for them. And one day we were having this conversation and I had felt comfortable enough telling this mother that I had a child that was accessing early intervention services and struggling in school. And at that point, I believe he was having a lot of medical issues and we had just begun his five of four.

01:10:04:08 - 01:10:24:19

Nickie Brandenburger

And so I was sort of I felt comfortable in telling this mom kind of what was going on with me personally. And so she was sitting and listening. You know, this is a mom again, I had been giving professional support to for many years. So she's listening and she's nodding as I'm telling the story of, you know, trying to wrap supports around him and managing all of these appointments and this and that.

01:10:24:21 - 01:10:45:24

Nickie Brandenburger

And she kind of got a little smirk on her face and she paused for a second. She said, Nickie can I give you a little bit of advice? And I said, Sure, why I'm telling you. And she said, Stay in your lane. And I at first I thought, What in the world does she mean? Stay my lane? And she kind of laughed and she said, You know, you have been a fantastic support coordinator for our family.

01:10:46:01 - 01:11:06:00

Nickie Brandenburger

We have really benefited from your knowledge and your resources. And I think, you know, I'm so appreciative of it. But you are also Thomas mom. And I think sometimes it's easy to get into being a case manager or support coordinator for your son. And it's important because you do have a lot to manage, she said. But stay in your lane, stay in your mom.

01:11:06:00 - 01:11:43:11

Nickie Brandenburger

LANE And that's what she meant by that. And I was actually speech less, but in a good way because she was right. I really needed to learn to balance it better. The universe sort of gives you what you need at the time you need it. And that incident was probably about a year before I came to CFI. But that really that moment was really pivotal for me in terms of being able to marry those two things together, being a parent and advocating and understanding the challenges, but also supporting other parents and working with professionals so that that's really when it pivoted.

01:11:43:13 - 01:12:13:21

Jen Reese

That is a really good example of what we deal with at the Center for Family Involvement all the time. And I think about how sometimes it's not possible to stay in your lane because when we have to deal with the IEP process or getting second opinions and really going up against what a doctor tells you, because in your bones, you know that it's wrong and these things are hard and.

01:12:13:23 - 01:12:14:10

Nickie Brandenburger

Sometimes you.

01:12:14:10 - 01:12:34:12

Jen Reese

Want to stay in your lane, but you can't. With the CVI, as we know how to help people kind of do that. And that's why we're so passionate about the work that we do. So can you give some examples of some of the work we've done where we have helped families in this way to kind of figure out how to navigate this road?

01:12:34:12 - 01:12:43:03

Jen Reese

Because it's hard and there aren't that many of us who have children with disabilities. It's just such a different world.

01:12:43:08 - 01:13:14:06

Nickie Brandenburger

And I think that's one of the things that's unique about the Center for Family involvement. And, you know, our staff that are spread throughout the state of Virginia and our network of what we call family navigators, which are parents and family members and caregivers that have loved ones with disabilities. And they're spread throughout the state of Virginia. So our network has, you know, 40 plus volunteers and then 20 odd staff who all have very different experiences, you know, very different cultural backgrounds.

01:13:14:08 - 01:13:33:04

Nickie Brandenburger

Some of us were born in a country outside of the U.S. Some of us were in military families, and we had that transient sort of lifestyle and childhood. Some of us live in rural communities with very few resources or limited resources, and some of us live in cities where we're almost overwhelmed with resources. And there's everything in between.

01:13:33:06 - 01:14:03:19

Nickie Brandenburger

We have children of all ages with all different types of disabilities, but the one common denominator that we all have at the Center for Family Involvement is we have someone we love very dearly that has a disability or some sort of special health care need the magic in the work that we do, the family to family, parent to parent support is that when you can connect with that person, that has reached out looking for help, when you can connect with that parent and say, me too.

01:14:03:21 - 01:14:32:24

Nickie Brandenburger

There's a magic that happens and sometimes you'll feel a little goose bumps on your skin. You feel that connection when you can share a story and it helps another parent feel validated in how they're feeling, what they're experiencing. Because you say, Yeah, me too. Been there, done that. And it helps even more when the person you're talking to looks like you maybe is from the same cultural background is you lives in the same community.

01:14:33:01 - 01:14:53:03

Nickie Brandenburger

And that is also unique, I think, to the Center for Family involvement because we tried to ensure that when a family calls us and asks to be matched with another parent that we have taken into account a lot of different things, we want that match to be, you know, for there to be some perceived sameness among those two parents.

01:14:53:03 - 01:15:15:06

Nickie Brandenburger

And sometimes that perceived sameness is the diagnosis that the child, if you've got a child with a really unique, rare genetic disorder and you find another parent that has that exact same rare genetic disorder, that's the perceived sameness and the connection, sometimes it's cultural background. You know, your children may have a very different diagnosis, but if you both are from South America, that's that connection.

01:15:15:06 - 01:15:34:02

Nickie Brandenburger

You know, you speak the same language. And I think that that is one of the driving forces behind the work that we do. And I think because we also at the Virginia Center for Family Involvement have connections with partners outside of Virginia. And so we also have a unique opportunity to be able to match and support parents outside of the state.

01:15:34:04 - 01:15:55:02

Nickie Brandenburger

You know, we have these other network sister organizations that also do parent to parent, family to family support throughout the United States. And we can reach out to each other and say, hey, I've got this family. This is what they're dealing with. This is the dynamic. And you can send that out to all of the other state organizations and match.

01:15:55:02 - 01:16:17:14

Nickie Brandenburger

And I've supported parents in Texas and South Carolina. We've supported parents in Alaska. That model of support, which really kind of started a long time ago, the parent to parent model started, I think, in the seventies with parents sitting around a kitchen table saying, hey, you know, we we have lived experience that should count for something, lived experience should equate to some sort of professional experience.

01:16:17:14 - 01:16:46:05

Nickie Brandenburger

And I think that that is also at the the basis of what we do at the Center for Family involvement, because, yes, we're parents, but we've been accessing those services and resources for our family members. So we have knowledge which equates to professional experience. And so it's all about where in those two hats. And I think another thing that we do is we're able to coach parents that haven't had an opportunity to learn how to be a collaborative advocate.

01:16:46:08 - 01:17:03:01

Nickie Brandenburger

It's it doesn't come naturally to parents. This child is born to you. You're you love them. You want what's best for them. But there's a period of grief. I think, that every parent goes through like I did with my own son, a period of denial and grief of what is in front of you with raising this child with a disability.

01:17:03:01 - 01:17:31:11

Nickie Brandenburger

And that takes a while sometimes for parents to get through that. And they may not have the resources around them to help them cope with that. I have lots of resources around me and I still struggle, right? And so I love the opportunity to be able to work with a parent that needs that kind of coaching and mentor and they need someone to one, validate what they've experienced and not shame them or immediately start pointing them in the direction, say, call this person, do this.

01:17:31:11 - 01:17:52:15

Nickie Brandenburger

And you know, some families aren't able to take in information from you about resources they can tap into because they're still processing their emotions. So you got to sometimes have to step back and slow down. And the first line of support is just shut up and listen. Just listen to their story. You can take notes, but hear them out first.

01:17:52:15 - 01:18:12:24

Nickie Brandenburger

Don't immediately start diving in to provide support and resources. I think there's a lot of organizations out there that do that. That's what I did as a support coordinator. My job was to immediately lengthen to services, right? But I didn't have that emotional connection with them before I became a parent. I might have been a really good support coordinator and I could say, have you tried this resource?

01:18:12:24 - 01:18:37:21

Nickie Brandenburger

And, you know, I'd been in the field long enough. I knew a lot, but I certainly didn't know what it was like to be a parent. But I think that's definitely something at the Center for Family Involvement that makes us really unique from some of the other parent organizations that we really do try to focus on that emotional support using active listening skills and motivational interviewing techniques to try to get at what's behind the emotion.

01:18:38:01 - 01:19:02:15

Nickie Brandenburger

Something like anger. When you're working with a parent that's angry or frustrated, there's something behind that, that emotion of anger and frustration. Usually it's fear or sadness. And so when you can get to that, sometimes it can break down those walls so that that parent can process those emotions, acknowledge it, realize it's validated emotion, and then move on to a place where they're willing to accept help and resources.

01:19:02:17 - 01:19:09:06

Nickie Brandenburger

That doesn't come to everybody naturally. Sometimes they need to be taught that or somebody needs to mentor them.

01:19:09:08 - 01:19:32:13

Jen Reese

I think something that is also important before we have to wrap is we talk about family to family support and we match families with people with similar needs. But it's not just it's so much more than what you think of just sitting and chatting in a coffee shop because the people with Center for Family Involvement, the staff and the volunteers, they have training.

01:19:32:16 - 01:20:06:05

Jen Reese

This is family engagement, but this is intentional and informed engagement. And so it's a little bit different than just joining a group on Facebook and chatting there. So often I see a group of well-meaning people get together and it is just a lot of letting things out. But there's no movement forward, there's no solutions based ideas, and I feel like the work that we do, you can let it all out, but then you can also offer solutions and ways to deal with what you're going through.

01:20:06:07 - 01:20:09:01

Erin Croyle

You're doing the training. Nickie

What do you see?

01:20:09:03 - 01:20:27:06

Nickie Brandenburger

It is so important when you're providing support to a parent and they're asking for resources. It needs to be unbiased information. I do think that there are some organizations and support networks out there that are great about when a parent wants to have a place to vent their frustration. You know, that may be the intent of a certain group, and that's okay.

01:20:27:11 - 01:20:44:18

Nickie Brandenburger

But, you know, to move past that to make progress, you need to kind of know what resources are available. And I can get a little frustrated sometimes with some of the like, for example, social media groups where, you know, you can go out there and put a comment or ask a question about your child and you're going to get an opinion whether you like it or not.

01:20:44:18 - 01:21:07:22

Nickie Brandenburger

But there's a lot of like if you put the information out there, someone is going to say something. And just because one parent may have had a bad experience with an organization doesn't mean that you will. And so I think one thing we really emphasize in our training with staff and volunteers is the information and resources that we share and needs to be unbiased, because what works for one family may not work for another, but they need to at least know what's available.

01:21:07:22 - 01:21:25:00

Nickie Brandenburger

And I think there is a little too much bias sometimes, and that's very confusing for a family and it can really lead them down. You know, the wrong path. If somebody is saying, don't do that, that's a terrible option for you, how do you know it might have not worked out for your family, but it can for somebody else's.

01:21:25:00 - 01:21:47:15

Nickie Brandenburger

And we really are very careful about that because I think, like I said, it can be very overwhelming for a family if they are led down a path that doesn't get them anywhere or even led down or encouraged to be volatile and collaborative. If you're supporting a parent and you're encouraging them, let's go into that IEP and and we're going to really let them have it in the end.

01:21:47:15 - 01:22:11:19

Nickie Brandenburger

I just don't think that is very effective for everybody. Especially educators are stressed and overwhelmed these days. They have a lot going on. And so to kind of come in at that, the whole system is against my child. That can be really a tough situation that doesn't really get you in the end what you're looking for. And so really trying to encourage collaboration and sitting back and taking all the information in and making an informed choice.

01:22:11:19 - 01:22:25:10

Nickie Brandenburger

So when you offer that information in an unbiased way, it does allow that parent to take a step back and process it and then make an informed choice. And I think that that is a really important part of our work for sure.

01:22:25:12 - 01:22:29:13

Erin Croyle

Absolutely. And I think something that it even helps me.

01:22:29:15 - 01:22:31:04

Nickie Brandenburger

Is.

01:22:31:06 - 01:22:55:01

Erin Croyle

The honesty that we share when we talk about this is I look at our colleagues, I look at Dana Yarborough, I look at everyone when we talk about IEP meetings. We know how to help families do it. But we will go ahead and tell you, like I can say, I cry at almost every IEP meeting. I just get emotionally because it's your child, it's your heart sitting there on the table.

01:22:55:01 - 01:23:22:07

Erin Croyle

So we know that it's easy to say how to do things and and whatnot, but we also know how hard it all is and will help validate that. So you don't feel I mean, you know how sometimes you feel crazy? I mean, literally and I but she's our mental health specialist. I'm sorry. I know we're not supposed to use that word, but I mean that literally it's the hardest job in the world, parenting.

01:23:22:09 - 01:23:45:22

Erin Croyle

And so to have parents in a similar experience who also have training, too, to guide you is such a rare thing to be able to offer. And, Nickie, I know you have to go. I have one last two part question. Okay. I'm looking at the work that we've done in 2023. I'd love to know a couple of things that you're most proud of, and I want to know what you're excited about.

01:23:45:24 - 01:23:47:13

Erin Croyle

For 2024.

01:23:47:15 - 01:24:07:22

Nickie Brandenburger

I love so much about my job, but one of my most favorite projects is working on the I'm Determined State team, which is sponsored by the Virginia Department of Education. But it really is a wonderful program that really encourages self determination among students with disabilities. And there is an element of, you know, how can youth learn how to become more self-determined?

01:24:08:00 - 01:24:38:21

Nickie Brandenburger

How can the parents support their youth to be more self-determined? And how can educators support the students and parents self-determined? So it's a beautiful, like triangular relationship. And I've had such a wonderful experience over this past year working on that project, because not only at my supporting parents, but I'm actually able to to work directly with youth and these wonderful youth leaders, youth that have disabilities that are learning how to be leaders around the state, to support other youth with disabilities to become more self-determined.

01:24:38:21 - 01:25:05:00

Nickie Brandenburger

And we've had great opportunities to work with special educators. I just came off of a conference last week, the Undetermined Aspire Symposium. We had just over 100 specialized teachers from all over Virginia attend. I was able to lead a session with. I had to Co-presenters one is a former youth leader, a young woman who has a disability and received special education services, and now she's actually a paraprofessional working in the school system.

01:25:05:00 - 01:25:27:22

Nickie Brandenburger

So she was sharing her perspective as a former youth leader and a current paraprofessional and using, I'm determined, tools to support children to be more self determined. My other colleague is with James Madison University, the training and technical assistance there and she's got just argued for her dissertation in August and now has her doctorate in education. And she was there giving her perspective as a special educator.

01:25:27:24 - 01:25:44:14

Nickie Brandenburger

And I had a chance to give my perspective as a parent on how we supported our son with Self-determine the Nation and identifying what his strengths and needs were. And it was just such a great opportunity to be able to be with teachers and youth leaders and parents all together so that I'd just really enjoyed that project this year.

01:25:44:14 - 01:25:49:02

Nickie Brandenburger

And we've done some really wonderful things. And again, next year I think we've got some even better things planned.

01:25:49:02 - 01:25:55:12

Erin Croyle

So I love that you brought up youth and the future, and I just.

01:25:55:14 - 01:25:56:01

Erin Croyle

Have to.

01:25:56:01 - 01:26:13:04

Erin Croyle

Add the self-determination is so important. We actually also do work with siblings and talk a lot about supporting siblings. And some of the wisdom I hear from, you know, the siblings and the self advocates. I mean, I it gives me so much hope for our future.

01:26:13:06 - 01:26:32:11

Nickie Brandenburger

Yeah. You know, and I think, you know, the reason why I've probably been so excited this year about that work because I have an opportunity to work so much closer with the youth leaders on that project is that my son just transitioned from high school and he is now a freshman in college. You know, 18 years ago, if you'd told me that we'd be here, I don't know if I would have believed it.

01:26:32:13 - 01:26:53:11

Nickie Brandenburger

And so because we went through that transition with him and he's doing really well, you know, all of that work the last eight years to support him has paid off. And I see all these fantastic youth leaders doing the work now and connecting with other kids around the state of Virginia and encouraging them to be self-determined and speak up for themselves and has their own motivation.

01:26:53:11 - 01:26:57:20

Nickie Brandenburger

So it benefits everybody, really. But yeah, it's one of my favorite projects.

01:26:57:22 - 01:27:07:24

Erin Croyle

Yeah. And I'll put a link to Undetermined in the show notes. And we also interviewed one of undetermined founders, John McNaught, earlier this year. I'll put the link to that in the show notes as well.

01:27:08:01 - 01:27:15:19

Nickie Brandenburger

Thank you so much for having me. I absolutely love talking and bragging a little bit about our work, so I've really enjoyed our conversation. I could talk to you forever, I think.

01:27:15:19 - 01:27:19:00

Erin Croyle

Erin, Same. And we'll do this again.

01:27:19:02 - 01:27:44:04

Erin Croyle

As Nickie mentioned, we have family navigators all across Virginia and connections across the country. We know how different our lives are based on where we live. For families in rural areas, getting the care and services you need can be complicated. That's why we have a rural outreach specialist. Her name is Lisa Richard and she dropped in for the best of 2023 podcast as well.

01:27:44:06 - 01:27:59:19

Erin Croyle

Lisa, I spoke to you earlier in 2023 about Mother's Day for that special kind of talking about how different the experience is for us having children with disabilities. Lisa, Can we start, though, for a refresher? Can you tell folks a little bit about yourself?

01:27:59:21 - 01:28:21:15

Lisa Richard

Yeah, sure. Erin. My name is Lisa Richard, and I work at the Center for Family Involvement. I currently cover Southwest Virginia, but first and foremost, I'm always a parent. My oldest daughter, Zoe, has Down syndrome, and we have a rather large family. If you remember from the podcast in May, I have seven kids and my fourth child is adopted.

01:28:21:15 - 01:28:31:06

Lisa Richard

His name's Camden. He also has Down's syndrome and I just really enjoy working at the partnership and supporting families and caregivers.

01:28:31:08 - 01:28:55:07

Erin Croyle

Yeah, same. I never expected to like a job so much because it just relates so much to our life. Can you tell me and those listening a little bit more about the specific work that you do for the partnership? We have people across the Center for Family Involvement that just work with demographics that don't have enough attention, and that rural component is huge.

01:28:55:07 - 01:28:59:11

Erin Croyle

So fill us in on on your your work.

01:28:59:13 - 01:29:29:03

Lisa Richard

Yeah, sure, Erin You know, it's been a really fulfilling part of what I do because when I was asked by Nickie and Dana a while back now a few years ago if I would be interested in the rural outreach position, I never realized like how much of it actually means to me or how much the difference between trying to receive support and help and raise a child or family or live with a family member that has a disability.

01:29:29:03 - 01:30:04:08

Lisa Richard

The difference in being in a rural community and just the cultural part of that, the transportation part of that, the information and lack of information or misinformation part of that. And it's become a really rewarding part of what I do because I also live in a rural community and I've lived in many rural communities and just recognizing I just had a conversation with someone this morning and I my daughter needed some medical attention and I'm going to have to drive one hour away to get that for her.

01:30:04:08 - 01:30:40:13

Lisa Richard

And just like how you have to reorganize your day, your work, your time, your efforts and in trying to do those things that I'm not saying it's not difficult in areas that are more suburban or urban. It's just a different type of support that's needed in rural communities. And so I have really sort of grown this outreach program and one of the great things that happened is that I was able to partner with Carilion, and Carilion now sends me and refers lots of families that live and we are really rural and remote parts of southwest Virginia that I'm able to support and help.

01:30:40:13 - 01:30:46:00

Lisa Richard

And that's been an amazing part of what I've been able to do these last couple of years.

01:30:46:02 - 01:30:47:23

Erin Croyle

And what is Carilion?

01:30:48:00 - 01:31:09:16

Lisa Richard

So Carilion is a medical center in Roanoke, Virginia, and I was able to connect with an education consultant. I had done a presentation with Nickie and Rebecca a few years back, and she eventually just reached back out to me and said, you know, I have a family that I'm worried about. Would you possibly be able to support them?

01:31:09:16 - 01:31:27:17

Lisa Richard

If you can tell me a little bit more about what you do? And I'm like, This is exactly what I do. I'd be happy. And that has since grown. Now I work with the educational consultant, I work with the social worker, I work with the primary care physician, I work with the nurse practitioner, and they send referrals to me consistently every week.

01:31:27:21 - 01:31:36:08

Lisa Richard

Different families that they've worked with that they thought would benefit from help to see if I just navigating systems or providing emotional support to them.

01:31:36:10 - 01:31:38:24

Erin Croyle

Thanks, Lisa, and I'll be sure to put some more.

01:31:38:24 - 01:31:39:21

Erin Croyle

Information about.

01:31:39:21 - 01:31:41:09

Erin Croyle

Carelon in the show notes.

01:31:41:09 - 01:31:43:03

Erin Croyle

For anyone interested.

01:31:43:05 - 01:32:06:12

Erin Croyle

I grew up in a rural area as you know, in northeast Ohio. Yeah. And now I live it's not quite rural, but I live somewhere where you have to drive a really long way to get to doctor's and especially doctors that understand some of the really complex issues that children and adults with disabilities face. Yeah. So I'm just curious, Lisa, I'd like to hear a couple of highlights.

01:32:06:12 - 01:32:19:11

Erin Croyle

Of course, without sharing private information, which we would never do from year to year, because I don't think that all of our listeners really understand some of the specific things that families in rural areas face.

01:32:19:13 - 01:32:51:04

Lisa Richard

As you know, Erin there's like incredibly long wait lists for all kinds of things, whether you live close to them or you don't, because people oftentimes in rural communities don't have those resources nearby. The one just not aware of them or transportation is a huge issue for some of them because it requires so much time. It's not even necessarily the vehicle, but, you know, can you take a whole day off of work and and what that costs to get there and then you possibly have to stay overnight.

01:32:51:06 - 01:33:20:04

Lisa Richard

So oftentimes those big medical appointments are put off or they're not scheduled at all. And just the supports that are available possibly in the community, very little rest that support is available. We talk a lot about telehealth, but there's a digital divide and digital literacy is often an issue. I have families that I speak with that still have landlines and are not even able to access some of those resources.

01:33:20:04 - 01:33:46:11

Lisa Richard

Even if they knew about the Boston Times, what I do is I feel like a form of triage, you know, where we'll speak and we'll kind of look at what's the most important thing right now? What are you really struggling with? You need information about waivers. You need information about school IEP or just additional resources like ABA. I think families that don't know that their insurance would possibly cover special therapies.

01:33:46:13 - 01:34:12:21

Lisa Richard

And so disability, I have found, can be very isolating. And it's even more isolating in these tiny communities. And I have found that communities do tend to be very supportive, these rural communities, but they also just don't necessarily always have information that can be helpful. So, you know, the benefits are that you're often in a tight knit community that can be supportive.

01:34:12:23 - 01:34:40:04

Lisa Richard

But, you know, the downside is what are the resources that are out there? And really just looking at those kind of remote areas, understanding culture of them, there's trust issues sometimes, you know, getting resources outside of your community. So there's lots of different layers, but, you know, as I've done it over the years, I know better like the questions to ask and better able to listen.

01:34:40:04 - 01:35:06:21

Lisa Richard

I mean, we get great training on active listening. And I mean, that's a lot of what I do is just listening to families and then better understanding what supports they're in need of and then trying to find those supports. I mean, the great thing about CFI is we have so many wonderful, talented, educated people to reach out to that if I don't know the answer, I'm always like, Hey, I'll I'll be happy to say I don't know if I don't know and reach out to somebody that does.

01:35:07:02 - 01:35:18:14

Lisa Richard

And I do that quite often. The rural communities have my heart. I know what it's like. I love helping them and assisting them, and it's been a real gift to be able to do so.

01:35:18:16 - 01:35:39:17

Erin Croyle

Yeah, even us within the Center for Family Involvement, we're always helping each other because even if we're well-versed in something, something happens with our kiddos or a different kiddo has something that happens and we lean on each other. And just like you said, if we don't know the answers, we know who to look to to find the answers.

01:35:39:18 - 01:35:41:23

Erin Croyle

It's a really great network.

01:35:42:00 - 01:36:05:12

Lisa Richard

100%. I mean, Dawn Snow, which works with blind and hard of hearing, she was the one that taught me about waivers. And then Jen Reese is the one that consistently keeps me informed about them. And I can't even tell you how many people I've helped with waiver resources in rural communities because of those two women and CFI and how learning from them has helped me to help so many other people.

01:36:05:12 - 01:36:24:04

Lisa Richard

And the CSB is now are reaching out to me because that waiver waitlist is so long and they'll say, could you possibly work with some of these families and see if they're eligible for the Medicaid waiver? The key plus and I'm able to help them now because I learned from Dawn and Jen. So we do we learn from each other.

01:36:24:04 - 01:36:25:24

Lisa Richard

And it's a great support system.

01:36:26:01 - 01:36:43:13

Erin Croyle

Exactly. We actually just did a special with the folks that handle IFSP funds, and I'll put a link to that in the show notes. Lisa, you do so much. Can you just talk quickly about some of your other roles within CFI and as a community member?

01:36:43:15 - 01:37:09:15

Lisa Richard

I serve on multiple boards. I'm real excited about a board. Well, it's not necessarily a board. It's a regional council that Dana actually referred me to, which is Ballard Health Regional Advisory Council, and those are all the hospital systems in southwest Virginia, northeast Tennessee. And I've been able to participate in that as I've been well trained to do, bring the family perspective and the importance of that to the roles.

01:37:09:15 - 01:37:35:03

Lisa Richard

And then I recently was appointed a board member for Southwest Virginia for the community service boards, for all of them in Southwest Virginia, and was just recently at a conference and asked to sit on another regional advisory council. So just sharing information about that family perspective and how important it is and necessary it is when making any sort of decisions, policy decisions or otherwise.

01:37:35:03 - 01:38:07:08

Lisa Richard

And we always need to look to families and I would always say families first, because if you don't talk to the families, then it's not going to work out. It's policies don't support the families, then there's just really no need to proceed because it's never going to happen. You just can't push forward whatever your initiative is. And then personally, I sit on a community board that my son and daughter participate called River's Way, and that's just this incredible program is very inclusive and it has this remarkable walking program.

01:38:07:08 - 01:38:36:01

Lisa Richard

And Zoe in Camden, my son and daughter, every day walk in different high schools, middle schools and elementary schools, as they're called, game changers, where they walk with typical students and students that are also served by special education services. And they talk to the classrooms, they walk through the classrooms, they new community theater. They do all types of different things in the community.

01:38:36:03 - 01:39:06:09

Lisa Richard

It's been a real honor to sit on that board and just see how people intellectual disabilities aren't just living in the community, but they're thriving and they're providing real change and direction. I mean, they're called game changers because their people look to them for inspiration. I mean, my son sometimes walks five, six miles a and Zoe usually walks 1 to 2 miles a day, and they have a social media account.

01:39:06:09 - 01:39:23:16

Lisa Richard

And so it's it's really fun to see everybody say, you know what I saw Zoe walk two miles today. So I got up off my chair and got outside. And it's been great to see them really contributing to their community and not just receiving services but being part of it.

01:39:23:18 - 01:39:39:05

Erin Croyle

Yeah, and just hearing that, I think about, you know, I have a younger son with Down syndrome and the representation for students with disabilities to see they're not peers, but older people who look like them must really mean something.

01:39:39:07 - 01:40:01:07

Lisa Richard

It's been so great. Erin And also this just happened the other day. I took Zoe on Saturday to McDonald's and a young woman stopped in and she grabbed Zoe and they hugged each other and she said, I remember walking with Zoe in middle school and it was such a great experience. And this happens to me time and again in the community that people recognize them.

01:40:01:07 - 01:40:34:08

Lisa Richard

And then it makes me so happy because, you know, Zoe and Camden are older now and those opportunities weren't available and everybody was still really looking at segregated classrooms and specialized instruction. And and I've just seen the benefit of Zoe and Kim now being in the classrooms with kids that will hopefully not look at segregation as the option, but say, I remember having them walking with us and being with us and talking to them and why would we put them in a place far away?

01:40:34:08 - 01:40:47:23

Lisa Richard

So I feel like it's doing so many things for the community and it's also helping people recognize the disabilities natural. And it's just a part of life and they're just like us. They just need additional supports.

01:40:48:00 - 01:41:01:14

Erin Croyle

Yeah, absolutely. That's refreshing. So on top of all the things you're doing with work and your family, you also are a genetics navigator and you got a degree this year. Can you tell us a little.

01:41:01:14 - 01:41:02:24

Erin Croyle

Bit about how you.

01:41:02:24 - 01:41:05:12

Erin Croyle

Did all that and what you did?

01:41:05:14 - 01:41:35:08

Lisa Richard

Wow. So I will speak briefly about the Genetics Navigator program. Really excited about that because we collaborated with Nine Mack, which is in New York Mid Atlantic Caribbean Regional Network Center, and they're seven across the country. And That collaboration has been really eye opening because we recognize a lot of people have a genetic diagnosis or don't have a diagnosis, and that genetics might be the answer for them, or at least an answer that they're looking for or to work things out.

01:41:35:10 - 01:42:13:04

Lisa Richard

We're of course not in any way genetics counselors, and I know very little about genetics, but I am able, along with there's ten of us trained across Virginia to help families better access genetic services. And we've been trained to really help people better understand genetics and why it's important to understanding your child's diagnosis. And then it's not necessarily visiting a geneticist one time and getting a diagnosis that you can kind of see how whatever it is, your diagnosis is kind of works across the lifespan because different things will happen at different times.

01:42:13:04 - 01:42:35:16

Lisa Richard

And it's really great to have access to a genetics counselor or to a geneticist and then really having that literacy and being able to have those discussions. So this has been a really exciting program and we continue to do outreach and presentations about it across the state. We're also partnered with the Virginia Department of Health in this program, So that's been really a great program.

01:42:35:18 - 01:43:04:03

Erin Croyle

We ran into some technical difficulties, just as Lisa shared that she earned her master's in science from Virginia Commonwealth University this year. She's a remarkable woman with so much insight, as is our regional network coordinator for Northern Virginia, Jen Reese I like to refer to Jen as our waiver guru. She's always on top of the latest in that complex web of services that is so critical for so many individuals and families.

01:43:04:05 - 01:43:18:22

Erin Croyle

When Jen isn't working or with her family, she's a powerful advocate for people with disabilities, especially those who are medically and diagnostically complex. I invited her to share more about her work with CFI and the FDA.

01:43:18:24 - 01:43:35:07

Erin Croyle

Jen, thank you so much for joining us. I want to start by you giving us an introduction about who you are, but also who we were before I Children informs what we do so you can kind of include who you were before kids and then how your your girls changed you.

01:43:35:09 - 01:44:06:07

Jen Reese

You are so before I had kids, I had a communications web content career that was at least 20 years. And then once my daughter was in 2008, I took on a real advocate role for her in her health care. And then whatever I learned, I always made sure to share with other families that progressed more, and we started sharing our story with some elected officials and decision makers to try to make sure people got resources they needed.

01:44:06:09 - 01:44:20:18

Lisa Richard

So two daughters, both with disabilities, my older ones are much more prevalent and you can see it on her. And my other daughter has they call invisible disabilities, which is more mental health, atypical kind of stuff.

01:44:20:20 - 01:44:40:13

Erin Croyle

Well, Jen, talking about that advocacy, you did it from the get go, which a rare thing. And I think that comes with having a rare diagnosis. I'd like to hear a little bit more about you paving the way with that and the work that you've done.

01:44:40:15 - 01:45:08:16

Jen Reese

When my daughter was born, she had a really bad seizure disorder and they always assumed it was something genetic. But then they did a lot of genetic testing and everything would come back negative. And so I took the stance of we have to wait for science to catch up to her. And so finally, when she was four, she got a genetic diagnosis of a non inherited, which is considered called a noble genetic anomaly called step one.

01:45:08:19 - 01:45:31:19

Jen Reese

And it is an issue with the processing of proteins in the brain. And so for a lot of the kids, it causes retractable seizures, intellectual developmental disabilities, and then everything that comes with that, you know, once we got that diagnosis, I got involved. When I Googled it first, there was nothing online except the like chemistry drawing of the proteins in the brain.

01:45:31:21 - 01:45:58:20

Jen Reese

And so I created the first Facebook group for the diagnosis and was able to connect. And now we have connections worldwide with that group. Very interesting. There are some kids who get diagnosed now like three weeks old because they'll start having seizures and then genetic testing is way more prevalent now and much easier to get with insurance. And so they just send off for the whole exome genome and find, you know, anomalies.

01:45:58:20 - 01:46:38:24

Jen Reese

And so kids are getting diagnosed at three weeks old. And then the oldest that we know of is in her forties. I think there's lots more people who have this diagnosis. It's it's a big spectrum and a lot of people just present with like a severe form of autism, not necessarily having seizures. So, you know, some of my advocacy also has included working with the little lobbyists, which is a group of parents that came together when the Medicaid was being threatened and, you know, has just turned into a very powerful resource organization for folks with or, you know, especially kids with any sort of high medical needs.

01:46:39:01 - 01:46:39:18

Erin Croyle

Yeah, that's.

01:46:39:18 - 01:47:03:20

Erin Croyle

A great group. And I'll put links to all of that in the show notes, both for your daughter's specific disability, but also little lobbyists, which it is tremendous. And we need to unite together to make any changes, as we've found out in our own work. You spoke in front of the FDA or submitted. Can you tell me more about that?

01:47:03:20 - 01:47:05:14

Erin Croyle

Because that's a pretty big deal. Jen.

01:47:05:16 - 01:47:31:08

Jen Reese

You are. So this is actually the second time I've done it. I back in 2019. What happens is the FDA wants to learn more about specific diagnoses, especially rare genetic diagnoses and rare diagnoses in general, and how it affects the people who have that diagnosis, their families and everything in everyday life. And so in 2019, I was invited to one before COVID in person in Baltimore.

01:47:31:08 - 01:48:13:15

Jen Reese

It was connected with Johns Hopkins Hospital, and it talked about the kind of seizure disorder she has, which is called Lennox Gusto. It was great. We met in person. There were lots of other families. There were people from the FDA, people who work in the fields to really get a feeling and understanding of what that diagnosis means. So this year, the foundation for my daughter's genetic diagnosis, XP One Foundation, was working with the FDA to do a similar meeting to explain the needs of the kids, with the people, with the diagnosis, the families, and really give the FDA researchers, neuroscientists an understanding of what's going on in our lives.

01:48:13:15 - 01:48:34:12

Jen Reese

And so it was an all day meeting this time it was on Zoom. They switched to Zoom after COVID and don't do anything in-person anymore. So there was an all day meeting and what they had done is identify a bunch of speakers beforehand who recorded their stories, and mine was on the topic of current and future treatments and how that would affect our family and my daughter in particular.

01:48:34:12 - 01:48:54:02

Jen Reese

And so I recorded a video and they over laid some photos of my family, and I think there were ten videos that were played that day. And in addition to that, there was panel discussions and, you know, other speakers. And they also left it open for question and answer. She could call in. So we talked about all the different things.

01:48:54:04 - 01:49:15:20

Jen Reese

You know, again, my daughter's diagnosis, a big spectrum. You know, there are some kids who are verbal and can walk and just have real severe behavior, you know, similar to a severe autism diagnosis. And then there are some kids like my daughter who are on the way more involved spectrum where the seizures have just cause irreparable damage to her brain.

01:49:15:20 - 01:49:36:24

Jen Reese

And so she's really much more medically fragile. She needs total care. I explained, you know, her situation to people just so they get an understanding. Don't really like saying it this way, but that she's a infant in a 15 year old's body. And so, you know, like everything she needs, everything done for her. She even has a feeding tube.

01:49:37:01 - 01:50:00:10

Jen Reese

And, you know, she she takes being sick a lot harder than some people and oftentimes ends up with pneumonia. So I talked about that and really the the in-depth care that she needs and what it really means for our family. And at one point, a lot of the parents on the session talking about how they wish their child could talk and and tell them when they were hurting.

01:50:00:10 - 01:50:22:24

Jen Reese

And I started getting frustrated because, yes, being able to communicate would be great. But I want them to stop dying because just in the past month we've lost three more kids with this diagnosis. And it's either from SUDEP, which is sudden unexplained death from epilepsy. So it's a seizure you just can't recover from, or a lot of kids passed from severe respiratory issues.

01:50:23:01 - 01:50:43:05

Jen Reese

So COVID was just a nightmare for us. People were talking about it would be great if they could communicate. And I'm like, Yes, that would be great. And I've always told Kailyn that if her first word is a four letter word, I am fine with that. But, you know, the fact that we were focusing on communication, I wanted the research to understand, yes, that's a good area to focus on.

01:50:43:05 - 01:50:54:00

Jen Reese

But the overall, you know, too many of these babies are dying. So I really brought it back to that. It was it was an interesting day and it was a good discussion. And I think it'll make a difference.

01:50:54:02 - 01:50:59:10

Erin Croyle

Well, Jen, thank you so much. It's always a pleasure talking to you.

01:50:59:12 - 01:51:07:24

Jen Reese

Thank you.

01:51:08:01 - 01:51:37:13

Erin Croyle

What Nickie, Lisa and Jen shared barely scratches the surface of what we do, Some other huge accomplishments for this year. Our mental health specialist, Patrice Beard, served as a AUCD’s, children's mental health champion from Virginia. AUCD is the Association of University Centers on Disabilities. It's a member organization that supports and promotes national network of university based interdisciplinary programs focused on disability.

01:51:37:15 - 01:52:03:00

Erin Croyle

Its mental health champions work in partnership with the Centers for Disease Control to develop state specific strategic plans for mental health promotion, prevention supports and the creation of networks. Think schools, medical professionals, communities. This is to promote better connections within these systems. We're so thrilled that Patrice is being recognized as the champion we've always known her to be.

Cultural brokers

01:52:03:00 - 01:52:27:01

Erin Croyle

Mauretta Copeland and Edgar Gamba are both family support specialist with Project Peace. In this case, peace stands for Promoting Employment After High School through Community Expertise. This project focuses on giving a voice to youth with disabilities so they can be part of the decision making process as they transition out of high school and into the community. Finding meaningful employment.

01:52:27:03 - 01:53:01:15

Erin Croyle

As cultural broker to the LatinX community, Edgar runs the El Camino Support Group. The English translation for El Camino is “the way” which beautifully summarizes what families do for one another. We show each other the way,; something we all need as we journey through the twists and turns that come with caregiving.

Mauretta has had a jam packed year. In addition to her work as CFI’s cultural broker to the African-American community, she earned her bachelor's degree and became an empty nester, which can be a very different milestone when you have a child with a disability.

01:53:01:17 - 01:53:30:16

Erin Croyle

Mauretta shared her experience with parenting Special Needs Magazine. I'll provide a link to that article in the show notes. It's got a lot of useful information for families whose kids are considering moving out.

Amel Ibrahim, our cultural broker to the Arabic and refugee communities, managed to publish a book in her free time. It's a 280 page book of poetry about love, homesickness, being a mother, being a human being, and having an autistic child.

01:53:30:18 - 01:53:48:03

Erin Croyle

Amal has been writing since she was a child but put it on hold while raising her children. She returned to writing as a way to deal with pain and challenges. We'll be sure to let you know when the book is more widely available. This is just some of the work that we do outside of our everyday work of supporting families.

01:53:48:08 - 01:54:12:14

Erin Croyle

That includes conferences in Virginia and nationally, collaborating with our funders and community partners, attending events where we can meet families and so much more. And of course, this podcast, which I launched in January in collaboration with my communications partner and friend Jill Rose, we've long recognized that there's a huge lack of information and content out there for families like ours.

01:54:12:16 - 01:54:31:01

Erin Croyle

Our goal is to fill that void with entertaining, engaging, fact and resource filled programs that are relatable. We do this because we love podcasts and we recognize that there aren't really any parenting podcasts that touch on the things that we face every single day. So keep listening; rate, review, and

01:54:31:01 - 01:54:32:11

Jen Reese

share this almost one year

01:54:32:11 - 01:54:40:08

Erin Croyle

Old podcast of ours. This is the Odyssey Parenting, Caregiving, Disability. I'm Erin Croyle. We'll talk soon.