Sharing The Why | with Starfire Family Mentors
From Starfire, this is a podcast on what's more possible in inclusion, community building and relationships.
Hello and welcome to Starfire’s podcast. We're talking with Starfire, family leadership coordinator, Carol Combs, and two of our family mentors, Nancy Fuller, and Sara Vank. As family mentors, Carol and Nancy, and Sara guide families of loved ones with intellectual and developmental disabilities to nurture relationships based on common interests versus disabilities and beyond paid staff. As parents of children with disabilities and young adults with disabilities too. Carol Nancy and Sarah have firsthand experience breaking the cycle of social isolation, creating sustainable community supports and developing better stories for themselves and their children by creating and launching inclusive community projects. And they're here today to share with us the why, you know why they said yes to doing a family project with the family leadership network, why they hadn't done it before and why they think it's changed the way they build relationships. I would like to introduce Carol Combs who leads this effort for Starfire.
Carol Combs:
It’s great to be here and thanks for bringing us to together in this space to talk about the why of doing family projects and why the family leadership network exist. So the family leadership network is a family led effort that empowers families of loved ones with developmental disabilities to cast vision for what's positive and possible for themselves and their families. It's about discovering interest and identities beyond disability. And we support families in becoming named and known in their communities to create real connections that spark meaningful relationships as the family leadership network, there are some essential supports that we offer. So there's mentorship where you get one on one sessions with the Starfire family mentor, family mentors are parents and family members who have gone through the project process and have the lived experience of not just disability, but stepping into a space of more.
We offer free resources, including community design sessions that help us start thinking about ways that we can get connected. It's a great way to come together with others, to brainstorm and get some ideas of what we could do. Community story hours always highlight a person who has done a project and they're designed to support and cast a vision for highest hopes of what is positive and possible. And then our families at the center of a connected community training, help us understand what we're up against and what we can do about it. With the family projects. Each family is given a budget to launch a family project in their neighborhood or their community, whether that be defined by physical location or an interest. And we pay families for the hard work that they're doing to make this work come to life. The four commitments are a foundational component here at Starfire and within the family leadership network.
And what these do is they just provide guard rails for us. As we step bravely into the space of connecting with our community, they provide the opportunity for families to begin discovering ways that they can activate and share their gifts freely within their community. And they also provide room for a new things to grow and as space where we can discover and imagine, and co-create, they are creative and they're fun. And it's something that everybody can live by. Family projects are designed to support families to get connected. And these can be small or big. We've seen everything from front yard barbecues to outdoor movie nights, porch concerts, art days in the park community acts where we just simply care for our neighbors. We take them a card when they're sick. We welcome the newcomers to the neighborhood. The possibilities are endless, and the benefits of connecting with neighbors to become named and known are so great.
Robbie:
Thank you, Carol so much. So the family mentors with us today are Carol Combs. Who's um, wearing two hats today. It's not only the coordinator of the program, but also is a family mentor and Nancy Fuller and Sarah Vank. And with that said, I'm gonna stop the share on the PowerPoint presentation so that we can jump into some questions and really why we're here. So, Carol, I'm gonna start with you. Tell me why you said yes to doing a family project.
Carol:
Oh goodness. I love this question. And I think about it a lot. So we said yes to a family project five years ago. And the reason we said yes was the opportunity was right. My family and I were kind of lost and lonely and feeling at the mercy of the system. But I knew there was so much more for my son Grayson and his sister and our entire family. So the opportunity to just get creative and think about life differently was a breath of fresh air for us. It was a little scary because it was unknown. But for, for us, we really, we were lonely and we wanted to be a part of something greater. And we wanted people to step into the space with us and get to know us as a family, who we were, what our gifts were and the project space just gave us the opportunity and the support to do that. It was very life changing for us.
Robbie:
Thank you for sharing that. Nancy, you had a similar experience. Tell us, you know, why you decided to do a family project?
Nancy Fuller:
Well, my son's a little bit older than, uh, Carol's son Grayson. My son, Steve was in his early twenties and we only knew as a family about him attending day programming. And he wasn't thriving in that environment. He wasn't using things that were meaningful to him, skills and interests that were meaningful to him and kind of just lacking joy. He made that very obvious to us, not even with words, but with his actions. So his dad and I were looking for a new way. And when we came across Starfire and started looking at the principles and the projects that they were running, we just decided, you know, what do we have to lose the current method and the places he was going, wasn't really fulfilling him. So we were inspired to try something new. And that's why we said yes.
Robbie:
Sara, your daughter's younger than both Grayson and Steven, tell us what your experience was. Why did you say yes?
Sara:
I think I said yes, out of trust of a friend who had invited me to learn more about Starfire and the family projects. And she was just a little over a year old and I was coming from a place of starting that isolation, starting that loneliness because the most connected I was was with therapies and making appointments. It was just a whole lot. And then a friend asked me to go walk and he's like, Hey, this is kind of a family project. What do you like to do with your family? And you can do something fun and joyful and exciting that you guys like, which was so much better than like where's your insurance card. And like, where's that report and make this appointment. So that's, that's why I said yes, because it was just like a whole new invite than the invites I'd been getting from hospitals and first steps and all that stuff, which is the early intervention team. So that's why I said yes.
Robbie:
Well, I'm so glad you did. It sounds like all three of you had that same experience in terms of navigating through a system, pulling out an insurance card, filling out form after form. Did any of that play into your decision to say yes to doing a family project or, or maybe did any of that make you hesitant to say yes at first Carol, you wanna jump in on that one?
Carol:
Yeah. So Grayson's 14 now, but when we started this, he was eight and we were constantly, it was just a list of cans, wont’s and nevers. And I had never thought about his gifts before. I'm sad to say that, but we were so hyper focused on that list of cans, wont’s and nevers handed down a diagnosis that we were just ready for something new, because I knew that Grayson was more than, than his diagnosis. And for us, that was refreshing. And it was something that our entire family needed. His diagnosis became our sole identity as a family. And we knew there was more and we knew that we were more than his diagnosis. And so it was a breath of fresh air and it allowed us to step out of the, the service world and bravely into community. And it was something that at the time I felt that we needed and now I know without a doubt, it was what we needed.
Robbie:
Yeah. That's really good to hear. One of the things that Carol has shared in the past is that periodically and sadly you have to call for EMT support. And before you did your family project, before you said yes, when the EMT would come thankfully to your home, you felt that maybe you were doing all of the talking in that you felt a little bit like a burden. Tell us how you felt after doing those projects.
Carol:
So prior to doing family projects, when we would have to call for emergency services, it was solely eyes on me and there was no connection with Grayson. So he was just viewed very much in a burden type way, was the feeling I got from the EMTs when we stepped into the space of community that all changed. So we had the opportunity to, to meet first responders at the park, as we hosted events. And the next time we called, uh, and we needed support, the EMTs walked in and they were like, Grayson, this was not how we planned on seeing you. And they began talking to him and it was that moment that Grayson became fully human in the eyes of those around us. And it was just, it was very hopeful for me because he was no longer seen as a burden, but rather an important valued member of our community.
Robbie:
Yeah. That's awesome. Thank you. Thank you for sharing Nancy. Steven's a little bit older. Why hadn't you said yes. Prior to your work launching the, um, Anderson art collaborative.
Nancy:
Well, really, you know, we didn't know how we didn't know people were doing this. Yeah. It's kind of just not the culture of what people do as adults when they exit school. And so we didn't know how we didn't know where to start and Starfire, you know, as they, they teamed me up with a couple people to talk through it each month, they kind of guided me on the, how so, what I needed to know is it's possible to follow Steve's gifts and what the community needs and to create something that included him. So they told me what was possible. And then each month we would meet for coffee and the encouragement they gave me each month to say, you can do this Nancy. He loves art. And there's people in your community that love art too. And it's just a matter of getting some courage in going to coffee and meeting with some people. So I had the support, I needed to step outside my comfort zone, cuz you know, as a parent, it's really scary to approach people that don't have someone with a disability and ask 'em to join in on something. So I would just tell you that it was the team around me, of the Starfire folks that really gave me the insight that I could do something different and the encouragement to move forward.
Robbie:
Yeah. That's awesome. Sara. I know that when you started working with Starfire, your daughter was young, right? So a year you probably didn't have a lot of time to think about why not, but what gave you the, you know, the courage? What, what made you say: “Yeah, I need to do this”?
Sara:
I think it was those conversations with the mentors and the friends who were doing the work already. And they just gave me kind of like the, the light bulb went off and I was like, you know, I don't have to have the story written for my daughter already. I don't have to have her known in the neighborhood as the little girl on a, a gate trainer. And I'm the mom who's frantically in the beginning carrying a gate trainer and the oxygen trying to get in the car. I, I was just like, well, when asked like what we wanted to do and what we wanted our family to be known for, I had been living in Portland for 12 years and I had come back and where I live now is not like Portland, Oregon. It's very, you know, wonderful place, but a little bit less weird.
And I was like, well, let's make this place a little weird. And so like, it was it like that being asked, like, what would you want in your community? And I was like, let's more art and let's do something weird. And let's be like the, the, the nice, weird family. <laugh> not the creepy weird family, but the nice, weird family. And it completely overshadowed what people saw right off the bat, like making a story, created a new narrative for Lucy until she can take over her narrative. I wanted her to be known as a part of the family who lives art. She is now known as the girl who doesn't wear shoes. So that is a good thing too. <laugh> I take it. I will take it.
Robbie:
Amen. Absolutely. I really liked what you said about changing the narrative. Um, sometimes when a person is known for something, it blocks everything else out. They can't always be known for their gifts and to Starfire that's. One of the biggest benefits of our program is to give the world at large an opportunity to meet others and to share their gifts and to learn more and, and just to make the world more inclusive. Oftentimes people will say that working with Starfire helps change the way a parent or grandparent deals with others and connects with others. And I'd love your read on what your takeaway has been. Have you felt that you are more empowered or has it just changed the way you deal with, um, the day to day and with relationships?
Sara:
I would say yes, yes. To all of those things. Uh, not only was it empowering, but it helped me discover that as a family, we had the capacity to make some change around us and become more connected. The mentorship, the lessons helped me bolster some bravery and step outta my comfort zone as Nancy shared and say, let's meet for coffee. We're thinking about sewing at the park. And then as that evolved, we started thinking about like, we've met all of these amazing people through these simple interactions, they have gifts. And what happens when we combine our powers. And since then it's evolved and we recognize the importance of community and connections and contribution. And while we may not be doing the grand things like sewing at the park every week, we've gone deeper during this time where our world is saying we have to, we have to be a little bit more mindful and it's encouraged us to step into, um, community acts and recognizing that when we know our neighbors, we're safer and our family's safer.
And so now it's evolved to, we know all of our neighbors that we can see, uh, from our front porch and we connect with them on a daily basis. And we take the time, we know that miss Sharon next door, um, has two bees and sometimes they can be mischievous. And so we're constantly looking out for Rafferty to run down the alley so we can, we can help and, um, chill next door, right? Like there's just these acts of kindness that have occurred because we've recognized that we need to know people and people need to know us. One of the biggest realizations that I learned through the project process was that I was denying people, the opportunity to get to know Grayson simply because of the fear of rejection and lack of understanding. And by stepping into the space and making, uh, the commitment to the four commitments, it encouraged us to extend invitations and it allowed us to invite people in who were waiting for that invitation. I was just too scared to, to extend it. So that's been, that's been a really powerful lesson for us as a family.
Robbie:
Nancy, what about you? Were you afraid and what did you find was the biggest benefit of hosting the event? Did it change the way that you interacted with people? Did it grow your world?
Nancy:
It did. And it does. And it will. And, and I say that because it was that first small little project that built resilience in me and it built confidence in me to think about trying something again. And so we've been at this for a few years now from our first small little project. And the first one, I built just enough resilience to try something else during co you know, a sidewalk chalk in the neighborhood and inviting others to do their driveways and coming around and taking pictures of everybody in COVID when nobody wanted to go inside. And then that worked out well, met a few more families. And it was like, oh, what next? And that led to a third project that we just did on our own, which ultimately led to a fourth project. And then as I talked with other family mentors, I realized this is no longer even about one project.
What I call what we live now, it's a Starfire lifestyle, and it's a lifestyle of, we choose now to put ourselves out there. And if people reject us, that's their loss, that's their loss. That's not our loss. And if they don't reject us, it's an opportunity to build friendships. And you know what, it's not just about my son, Steve building a friendship for him. I'm building friendships for me, selfishly. So there's neighbors and people in the community that I never knew, never knew that I would find them. And without taking these little small steps and risks, I would never have found them. And so this whole, lifestyle's been a blessing, big blessing to our family and it will continue.
Robbie:
Yeah. That's awesome. Sara, you wanna wrap us up with maybe talking a little bit about how this experience has helped empower you in relationships with the community?
Sara:
Absolutely. I mean, to follow with Nancy and Carol is a, a tough gig, but like, yes, I would say the Starfire lifestyle is one we strive for. And also she's still young. She's four now. And I feel like it's the joy driven life. Like knowing our neighbors brings more joy, even small, small little acts of joy, like on the corner, there's a single dude. He owns a bar like lives hard, plays hard, but we give him a Christmas gift or holiday gift every Christmas. And he goes and gets my kids like a little like ice cream card. I mean, I am shocked, but every year he does it and it it's just like, and now I know this guy is gonna keep an eye on my kids. And that's just like a little example of like, we have a friendship and it's small and it's little, but it's meaningful.
And like Nancy said, we're gonna do a pumpkin patch in the fall and just buy little mini pumpkins, throw 'em in the yard and have a sign and say, you know, take one, give one, enjoy it. We want people to have like these little, little orange pieces of joy because my daughter loves pumpkins. And that's her thing, her birthday's in the fall. So it's really affected. I, I will say though, as a parent, just personally, my growth and that bravery Nancy was talking about, and that resilience has helped me provide more opportunities for her to try new things. Cuz the fear that's kind of wrapped up in disability and oh, if she fails or if she falls or if people don't understand why she's not responding right away, blah, blah, blah. Like now I'm just like, you know what it's gonna be all right, we're gonna try this hip hop class. It may be a hot mess, but it'll be fun. I mean, who doesn't like dancing. So like that, I will say being a part of the Starfire experience, the family mentoring experience and doing a family project has helped me get to that point to let her try more instead of my fear saying she can't.
Robbie:
Thank you. Thank you so much. It truly is about healing and community and a whole lot of teaching, right? It's about sharing your story and your lives and being brave enough to do so. So thank you for all of the work that the three of you do on behalf of Starfire and on behalf of our community, we're better. And your involvement in participation in bravery is helping us build a more inclusive community alongside folks with than without disabilities. Um, so thanks very much Carol, as the program coordinator, do you have anything to add before we close?
Carol:
I would just like to say that it just takes, uh, as Nancy says, eight seconds of outrageous courage, uh, to reach out and extend an invitation or say hello and the Starfire team is always here for everyone. Who's thinking about ways to get connected and ways to heal the culture. So we're here for y'all.