Sharing Their Story | Tyner-Wilson Family Project
From Starfire, this is a podcast on what's more possible in inclusion, community building and relationships.
Please note: The following podcast transcript is machine generated and may contain spelling and grammatical errors.
Robbie:
Hello and welcome to Starfire's podcast More. I'm Robbie and we're talking about the Starfire Family Leadership Network with Melanie and Steve of the Tyner-Wilson family. Melanie and Steve joined our family-led network this summer. And if you're not familiar, the Network helps families of loved ones with developmental disabilities to cast a vision for what's positive and possible for themselves and their families. It gives families an opportunity to discover interests and identities beyond disability, discover their gifts, and then share those gifts with their community. Families in the network get 1:1 support, mentorship, training resources, and funding. We pay families for their time and to buy supplies or refreshments or signage for their community project so they can meet others, spark connections, and nurture relationships. So if you'd like your family to be part of the community and you're not sure where to start, check out starfirecincy.org/families.
Melanie and Steve, thank you so much for spending some time with us today to share your story, to help others learn more about Starfire. I want to hear about your project, but tell us a little bit about your family first.
Melanie:
Well, Steve and I have been together for a million years. We've been together, gosh, about 46 years. We live in Lexington, Kentucky and we have an amazing son, Jay, and he's our biological child who just happens to have autism. He's 29. He has an intellectual disability, but he's just the neatest, neatest person. But we had him very late, but we felt very honored to be able to have him as our son.
We wanted to have another child and we tried and tried and tried and were never able to get pregnant. We then got interested in adopting through our foster care system and we have this amazing son, Jesse, who is 22 and we got him when he was just three days old. We also have custody of one of his children, Braydon, who is now four and has a lot of energy. He's never not moving. He's just ‘go, go, go, go.’
Steve:
One of the neatest things about this whole situation is that we're getting to see all the joy and spontaneity and love that a little guy can bring to a family just by being himself and being interactive with us to the 10th degree, maybe 11th degree. He's interactive. So it's really quite a wonderful experience.
Melanie:
I started on my journey as an advocate for Jay 27 years ago. I was not very graceful. Basically, I'd never been in my lily white, middle class life, I'd never been discriminated against, and the first time it happened was a result of him [Melanie & Steve’s son, Jay.]. People didn't want him in their preschool program or their childcare program or they didn't want him to come to their child's birthday party, and so that kind of set the tone for a lot of my advocacy.
And so there were many years that I was very angry and very frustrated and I realize that that doesn't work. I mean, you can be mad and you can be angry, but what really seems to work is having him be his best self because he is this neat person. And as people get to know him, individuals have been really impressed with him as a unique individual. Now it's more about how can I make him feel like a part of the bigger community?
Robbie:
Talk with us about some of the individuals that you know and how you got plugged in.
Melanie:
I had always been, I guess, connected with Starfire. I got on your list serve and got different notifications in the past. There was a program, a meeting, where they talked a little bit more about the specifics of Starfire and I got a chance to listen more intently to what the whole premise, belief system was behind Starfire. I loved it because it talked about how historically you had been more of a day program and then you felt that you wanted to switch and be more inclusive.
Then the Starfire Family Grants came together and you were doing more of these kind of activities. And so the longer that I listened to the information and got to know what you all were all about and the beautiful thing is that you provide funding for the different projects. I just thought that was phenomenal.
Robbie:
Thank you for sharing that. And even as busy as you are, you felt that joining this Starfire network was worth it. And that says a lot about our program. I understand that you did two projects.
Melanie:
I know it's crazy.
Robbie:
That's awesome. Tell us about your projects.
Melanie:
We wanted to do a pumpkin decorating event. We reached out to our Neighborhood Association and they thought that was a great idea. They helped us advertise it. Because we had the funding from Starfire, we were able to purchase close to a hundred pumpkins for the two different events and lots of paint and lots of carving tools and set up of an event, if you will, where kids and their parents and adults and grandparents could come and decorate a pumpkin in any way that they wanted to. And so some people decided they wanted to carve their pumpkins. Some decided they wanted to paint their pumpkin.
Jay was there with one of his helpers and he decorated a pumpkin and had a really great time. And of course our grandson, Braydon, he just got way into it and was running around and there were tons and tons of little kids there. At the first event, I think we had maybe 30 families and children show up for the event. And we had neighbors that had never really talked to each other… connect. And I love that. I think that's kind of what neighborhoods are all about.
We had a second event that the Neighborhood Association asked us to do it a second time because the attendance was so great, and so they used it as kind of a strategy tool to get people to come to a Neighborhood Association event. And at that meeting we had over 50 people there.
Steve:
Actually 50 kids and 75 adults.
Melanie:
Oh gosh.
Steve:
So it was a record setting event. They never had such high attendance before.
Melanie:
Yeah. So it was wonderful. That night we had to go and buy more pumpkins. We drove to a pumpkin patch that was about 25 miles outside of Lexington. We loaded up our minivan with 50 pumpkins and bought paint. And right when we got back into Lexington, our engine started smoking. So we had several of the neighbors that pitched in and helped us finish getting set up. But it was so sweet how people were so willing to offer their support. I don't know. I was very touched by that.
Steve:
Yeah, it just makes a domino effect in your neighborhood of people helping each other and being more friendly as Melanie said, being more interested in who you are and what you're up to.
Melanie:
Yeah. Steve borrowed tables from his office and we bought a pop-up tent kind of thing and we set literally everything in the front yard. He brought hay bales so that the little kids could stand on the hay bales to be able to reach and paint the pumpkins and/or carve and caregivers could stand beside the child and help them with the activity. So it was a really fun... And it was only for two hours. That was nice because it was kind of in and out. The activity had a beginning, middle, and an end to it. And I think people came...
Steve:
There were kids running! Right? It started a 11:00 and like 11:01 there were kids all in the streets running to our house which was pretty cool. And parents trying to catch them.
Melanie:
Yeah.
Robbie:
Love it!
Melanie:
And we met a lot of families that had kids with special needs that we had no idea. And so that event gave them comfort to be able to talk with us a little bit about their life with their loved one. And so we were like, ‘You should do this event kind of thing.’
And it's so beautiful. He's another person that's in this community that is living life. He has all these neat things about him, but they're not negative things. He's a part of the community. That just gives me great hope for the future. What's really important to me as a parent is to have a society, a culture in our community, that is welcoming to him. That's kind of my passion I guess right now, is to make sure we can do that.
Robbie:
I do think that people appreciate the opportunity to be with others, especially post pandemic, but sometimes you have to take that first step of setting up an event or talking about what can we do. And then there's inviting people. How did you get people to come?
Melanie:
Steve drew this amazing flyer. My husband is an amazing architect and has a really great sense of humor. So he drew this flyer that was humorous and funny and he took it around the neighborhood and we posted it on the Facebook page. But then he decided he wanted to have a much more direct, so they put it in mailboxes or taped it to doors so everybody knew about it. And that was really cool.
Steve:
I had Braydon help me because he knew some of his friends would be coming from school. So we let the school know too, so his classmates could come if they wanted to. And sure enough, three or four of them did come. So he was in four-year-old heaven.
Melanie:
I mean, what's really beautiful is our neighborhood age wise, it's very diverse, but what was nice is that they got a chance to connect with each other. Now maybe somebody will say, "Hi Jay, how are you? Good to see you."
And I just love that. And there was a couple of our elderly neighbors that weren't able to leave their houses and come over. So we ended up taking pumpkins to them. We made an attempt to make sure people were included in any way, shape, or form.
Robbie:
You had mentioned something about some of the folks in your autism group, and I really liked what you said. You had talked about how there are some people in your group who would really want to know more about this work because they really want their loved one to be a part of the community.
Melanie:
Autism is such an interesting developmental disability, and so what ends up happening is families become very guarded and protective. And I think an event like this would give a way for the individual to be exposed to the neighborhood and have a positive experience and have fun. And also for people to see that individual living their best life as opposed to just seeing them when they leave the house and come back home because they're a part of the neighborhood too. You just want them to feel like they're a part.
Robbie:
Before we wrap up, I want to ask you if you have any additional thoughts about how Starfire has helped you or what Starfire has meant to your family.
Steve:
I think it gave us an opportunity we didn't think was possible. That's really probably the bottom line is just the whole idea that we would even do something like this was just not in our realm of possibility, but once we realized we could get the funding to do what we had to do, it's just a matter of gathering the troops and getting ready and it resulted in a fantastic memorial event for a lot of kids and a lot of adults too.
Melanie:
Yeah. If you're living life and trying to pay the bills and therapy and paying caregivers and all the different things that go along with it, the fact that you all provide the funding for events like this is just, I think is amazing. You made a lot more things possible than I think that maybe would've been in the past. It can be kind of daunting when you think about doing something like this and you think you're going to have to do it all by yourself.
And it was just so sweet to have the Neighborhood Association and different people be willing to assist. We very much have tried very hard in our life with him to make him a part of the community and we had always been comfortable with introducing him to members of our neighborhood. And it was just really the whole concept of your family project just fit so nicely into our philosophical belief system about the value of Jay and his existence in how we could make him become more a part of the community that is our neighborhood.
Steve:
I think it's one thing to wave across the street at our son Jay when he is walking by, but it's another thing to have an event like what you sponsored right in our own yard. Get some recognition of what he looks like and how he acts and what he thinks, and just try to get a little bit of interaction going with him because he's going to be in this house probably the rest of his life. We have many neighbors who have been around for 20, 30, 40 years and they need to know him as one of the up and coming citizens in our neighborhoods by having events like what you sponsor.
Melanie:
What's so wonderful about Starfire is that it's not about Jay or Jesse having a disability. The idea is that you provide opportunities that will get people interested in coming and attending some kind of event, activity that the individual just happens to be present and that they are there and they're a part of it and they are having a good time. It was just, I love the concept of it because it's such a humble kind of approach to encouraging inclusion in a very straightforward but subtle kind of way. And there's a real beauty in that and the simplicity of that. It was just a really lovely way to welcome and encourage the neighborhood to come and get to know our family.
Steve:
Yeah, I wouldn't be one bit surprised if everybody asked for a repeat next Halloween and did the same thing.
Melanie:
Yeah.
Steve:
I mean, that's how good memories are made if you're a kid or a family.
Melanie:
Yeah.
Steve:
That's what you remember about a neighborhood.
Robbie:
Melanie, Steve, I can't thank you enough.