Presvytera Melanie DiStefano: Welcome to Family Matters: Fully Human Edition. This is Melanie DiStefano. This is part two of a conversation with Summer Kinard.

Ms. Summer Kinard: One thing that I had a real gift— My youngest was first diagnosed. I had prayer and faith, but then I was also worried. I was like: I don't know what to expect now. And I went to the friend who runs the school, and I said, "I don't know what to do. What are my expectations now? What are the perimeters for his future?" kind of thing. And she connected me with a mom whose kid had been diagnosed for a year and had been in some early interventions. That mom, I wrote to her and I said, "I feel like I want my kid to have the forest, and I'm just going to have to set up a conservatory for him, and he's going to have to go into a greenhouse, an orangery."

And she said, "Well, I understand that you feel that way, but that's not accurate, and you need to stop thinking like that and just embrace the interventions and learn how to connect with him." I was like: I love her! Because she's autistic, too, so she was completely blunt with me and basically told me that I was stupid. [Laughter] She didn't say it and she didn't call me stupid; she just said, "That's not accurate. You're just limiting yourself. You have no idea what's going to happen. You just don't know what to expect, so just go with it." And I just really love that I talked to her.

There's sometimes when you just need someone to say, "You know, snap out of it. You have no idea what's coming. Yeah, it's going to be different, but you just never know what's going to happen. You just had imagined that you were the little center of your universe, and you're not now. You never knew." And I was like: That's true; I never knew.

Not knowing—it can be confusing in some ways, because it's like ideally if you wind up realizing that your kids are autistic or that your kids are going to have some particular needs that are expensive, that that comes with a bag of money, and it doesn't in real life! [Laughter] You're like: "Oh, no problem. We'll just pave the way with gold." You can't. So it's really easy to want to control things and to want to go the route of controlling other people or seeking means of control to make yourself feel in power rather than seeking the means to connect and communicate. There's something— St. Augustine has a sermon on disabilities where he says, "Disability is a type of martyrdom." He says it's a type of martyrdom, and St. Porphyrios says something kind of similar when he tells people, when he's talking about cancer. It's that you don't seek a false sense of security when you're confronted with a challenge. That's what they're trying to say. But instead that you realize that the thing that you need most in life is that connection to God and others. That connection to God is not your own will by yourself in a room; it's you and the community. It's always a communal good will.

So to enter into that, even though you're going to be exposed to imperfections in others, along with bringing your imperfections in—God's perfect, and you're only going to experience God in that community. So if you allow whatever you've been given to be an opportunity to witness to that love of God and love of neighbor, instead of trying to just control it— St. Augustine uses the example of going to the pagan healers, and that's where you have to, I don't know, have snake medallions or whatever they were up to at the time. He's like: Don't do that, and don't just try to buy your way out of it. It doesn't mean you can't try to be healed; it means you're not going to use your suffering—even if it's not suffering; even if it's just a difference that's hard to deal with sometimes—don't use that as an opportunity to try to control people or to try to control yourself. Don't make it about a control game, but instead to make it an opportunity of vulnerability and grace, to accept it as this gift.

He had this idea that human nature is fundamentally social. This is what we see in the Holy Trinity, how we're fundamentally in the image of the Holy Trinity, not just some sort of monad god where we're by ourselves. We're made for relationships. And because of that, he talks about how faith is contagious. That's why we have godparents for babies. He's saying that we're social creatures, and so we can contagion each other with sin, but the thing he usually talks about is contagioning each other with faith, that our faith is what's shared, and that our goal is to stop wanting things we don't have. That's his big thing. He says, in the end nobody will want anything but what they have, and God will be all in all, and we will no longer want to master each other, because we'll no longer be greedy because we want more than we have. And he's saying no, everything we have we've received from God. He actually— His whole thing is actually changing people's perspective toward gratitude.

I just want to say that because that's shaped my view of disability a lot. Everything we have is a gift. And people don't want to hear that disability is a gift. They're like: "I don't think God causes suffering," and it's like: Well, saying something is a gift for your salvation is not the same thing, because if you start saying God causes suffering and this sort of thing, that's coming from a place of wanting to control again. So if you're in the mindset of trying to control, well then of course everything you hear is going to make you mad. How can you do anything except fight those boundaries when everything's going to offend you, because you're not actually in control of the world. And we weren't made to do that. It never says that anywhere in the Bible. It never says we're meant to control anything. Even self-control, the spirit of self-control, the spiritual disciplines and self-regulation that we talk about in autism interventions, trying to control yourself in that sense, do what you want to do—even that is something that has to be a spiritual gift, that God gets to give you this. It depends on the mutual goodwill of others.

We're using dolls a lot with my kids. We're doing the "autistic Barbie goes to church" this time. It's really easier to see that way, because you can say, "Ah, I have a kind disposition in my heart," and it's like: You're not going to see that if you don't have a way to connect, I guess is the other thing. If these two are just standing in a room, they're not doing anything: do they have self-control? I don't know. Maybe her self-control is that she's bouncing, and maybe hers is that she's twirling. And they're both having self-control, but the thing that's going to make it into a spiritual gift is: Do they connect? What I'm trying to say: it's not necessarily going to look like you want it to if you're trying to control it externally.

Presv. Melanie: I like what you said about St. Augustine, going back to the original point that you made, disability being a martyrdom, and is that a gift, and sometimes people shrink from that. What came to me is that martyrdom is a free-will choice; it's a choice the martyrs made to accept the opportunity to suffer for Christ. So with any hardships we have in our lives, we can see those as gifts or opportunities, let God use us through those, because he's the God who can make the cross into the resurrection. But that it's through that path that his glory is most evident.

Ms. Kinard: And that the witness— Martyrdom means witness; it doesn't mean suffering.

Presv. Melanie: That's true.

Ms. Kinard: And so my autistic joy is a witness to Christ. [Laughter] It's a witness. Whenever I go and I find a flower, as a bee, I'm like: Yes, that's a witness. I can show you better than I can say it. With my girls, they're the ones who are kind of leading the show now with this "autistic Barbie goes to church." I did the first couple of them, and now they're scripting them. They love Barbies. But the reason why I was trying to use Barbies is because the practical way that this leads out is if you assume and you believe that God is really with you, then these two girls can make a connection that is holy. They can. I don't know how right this second. It's going to be weird maybe, but it's going to be there. And that's what bears witness. That's where your faith makes you whole. It's that we believe he's here with us. And then, whenever you see it, it's like: whoa! [Laughter]

Presv. Melanie: But we have to show up for that to happen, and so many of us, so many of our families, are hiding, because the rejection hurts and because the connections might take time or look different. But I would just say it is so beautiful when it does happen, those connections that may not look typical. So, yeah, just the encouragement to try to put our trust in God, that he is always with us, as you said. Even if others forsake us, he is always with us, and that showing up in worship can eventually lead to connection. At least for us it will, but for others, too.

Ms. Kinard: I think we have a real problem with isolation, though. I don't think we should rush over that. You're right, Presvytera. There's loneliness. It's intense, and most people don't stop and wait. Most people won't even wait for a little kid to use their talker to tell you something. People tend to be impatient; they tend to ignore people. There's all sorts of slights. What I do is I cry a lot, and I go and I pray. I think that's an important thing to acknowledge is that— I mean, I do have friends, but a lot of them don't live nearby, or they're my neighbors. But in the church, it's really hard to connect sometimes. Even if you're the person who is giving, a lot of times people don't give back even. So it depends on if you do manage to make connections— My classrooms were places of immense grace. I saw connections in there; I made connections because I used the strategies. I applied this theology, and by changing things so that people's sensory needs were supported and their executive function is supported with visual schedules, class plans, and I had sensory ways to interact with the faith— But I could go out of my classroom and experience people who don't know how to connect with you; maybe they had their own problems. But if someone made an effort and tried to talk to me, I would totally talk to them—but they don't usually. I feel like I wish people would be less like that. Most people aren't like that, but I'm just trying to say I just don't for some reason.

I think that people are on their worst behavior right after church, because they're hungry. People's foibles and things come out worse when they're really hangry. And we know as autistic people that we're going to be really unregulated. We know that we have to self-regulate. I'm like: I am not going to make a decision at this time. I'm not going to try to take offense of anything at this time. But I think that exasperates it. The times that we actually make the effort to be in society, we're dealing with people at their worst. They're hangry, and a lot of times they don't see people and they're trying to do a social interaction that's a game that you're not playing, whether it's just that they're interested in sports and drinking or they just want to know who you are in the business world or whatever it is— And this is not everyone. A lot of people are just nice people who are like: "Come and eat a cake with me." But if you encounter those people who are on their off behavior, then it's going to be harder to connect.

I wish we did a lot more stuff more than just right outside of Liturgy. I wish we did more "Hey, let's do something that's user-friendly to autistic people, too." There's this thing that I've always wanted people to do. I've always wanted people to teach while hiking or to do psalter walks or something, where you just go and you sing a couple of psalms and you go on a hike and you stop and you pray a prayer; then you keep going on a hike. I did that for a little while, but I couldn't keep it up, because it got really hot and droughty where I used to live. But I found out when I moved to this area, there's a teacher who actually teaches his junior high class by going on a hike, because their church is right by a hiking trail. That's the kind of thing that's not just good for autistic people; it's awesome for everyone, because you're self-regulating by walking. You have an automatic environment that you can connect with, and you could automatically have a conversation topic that's not exclusive.

Churches can, with a few simple modifications that will seem weird to them at first maybe, but they can actually make modifications to make the environment such that everybody can participate so we don't fall into our bad behaviors, we don't say, "Hi, I like cats," and that's all you say to someone when you show up to church. You're like: "I want to talk to you." They're like: "The cat lady?" I'm like: "I don't even like cats! I didn't know what to say." [Laughter] And that's kind of like giving everybody the executive function supports and the sensory supports they need to make those connections. That's one of the things that I'd love to do, so that you don't come in and you're just hungry and thirsty, but you have something to do.

Presv. Melanie: A common work together, a common experience.

Ms. Kinard: Or like stations of interaction with the faith around the room so you can connect around them.

I used to do a thing when I was Christian ed director at my previous church. We had once a month holy heritage days, and I would set up these stations around the room that were interactive, and that we would do something. I would teach, but you would also do something, like we'd fill these tiny little jars of myrrh, the little glass jars, and they would decorate Jesuses. I drew 25 Jesus faces on the little peg dolls and whatever. Or we would mix myrrh; that's a really good one for the second Sunday, the Myrrhbearer Sunday of Pascha. We stomped grapes one time. [Laughter] Something that's in the Bible, but you get to really do it. And it was just such a big deal to have the physical activity to connect us, because that's how we're meant to do. We're supposed to work together. We're not just supposed to try to control each other. And we fall into those temptations to control each other when we're bored.

Presv. Melanie: And sometimes it's people who are just socially awkward. I consider myself to be somewhat socially awkward, and you talked about masks. So sometimes we just learn to wear a certain mask in order to connect socially as best we can. But sometimes we just don't know what to say to each other. I mean, just period, we don't know how to connect. We don't know how to see another person. So it takes attention to appreciate the person we're in front of, that's in front of us, as that person, and to try to learn more about one another.

These accessibility practices in a church context, you mentioned the book that maybe you can share the name and where people can get it, because that can be really helpful.

Ms. Kinard: Okay, so, yes. Of Such is the Kingdom has a middle section about teaching. I think I called it "Theosis," and it's about how you learn the faith with patristic ideas. What I did was I took that middle section, and I applied it. In my follow-up book, Accessible Church School, which came out last year, Incarnational Practices for Participating in God, because participating in God is the way the Fathers talked about theosis, or becoming like God. It's not a spectator sport kind of thing. And participating in God, we do that through imitating Christ in the virtues, through praying and through participation in the sacraments.

It's easy to say that, and you're like: checklist! Prayed, did a virtue… [Laughter] went to church, took Communion, did confession. But actually, it's your whole life. As we know, when we go and we say, as my brain says in Greek, "Kai panton kai pason," the "and all your people." When you're praying for everyone, you pray for the whole world, "and all the people," and everyone responds, "and all the people." When that happens, you're acknowledging that this is something you have to live.

So what I did in Accessible Church School was I went through and I talked about preparing the way of the Lord. So God's with us, but how do we connect. In some ways, you have to prepare those neuro— You have to prepare someone's attention. And so I went through and I talked about how to arrange a classroom, some best practices—this is just a best practices book. Getting a patron saint for your classroom, setting it up so that you have an accessible prayer corner for everyone, learning through doing primarily. If you want people to remember something, then you're going to do the best practices. If you just want to feel like you did something and just check the list, that they're not going to remember, then you can do whatever you want.

If you want to act out the story, it doesn't have to be "stand up and act it out with the props," though that's a really good idea, to use some kind of props when you're telling a saint's life or Jesus' story or what have you. But it could be as simple as, in the Old Testament: "Who told you you were naked?" You just put some expression in it. You're going to go with the back-and-forth, and you just say it with the beats of a real story, not just the monotone that somebody's chanting because that's their job. They can do that all they want in church, but you're not going to connect with that in church when they're chanting something necessarily if you don't already live it in your other parts of your world.

So we're not going to do the monotone or the chant; we're going to go in and say, "What are they saying? How are they saying it? Where are they?" So you act out the story. That is a best practice: act out the story! [Laughter] The best practices are acted out. Music, do some kind of singing. You're going to be doing movements. And show-and-tell. And show-and-tell can be either something from the Bible or if I'm like: "Why do we use orange in this icon? Why does this represent water?" And people are like: "I don't know." And I'm like: "Have you ever seen muddy water? What color is it?" "Orange." "Okay, now we know why that icon color is orange." So you could mean something like that, or you could tell people, "Hey, we're going to talk about the tree of life. Can you bring me something from a tree this week to class." It can be anything like that, something hands-on, because you're learning to connect with the story physically.

And praying, obviously, but when you pray, you pray through actions. So I have a bunch of dragon puppets that I use for little kids, and I have a three-headed dragon. We have a sheep in our classroom, so we tend to do this thing where the kids get the sheep puppet, and [I'm] like: "Oh no, the dragon's going to eat the sheep." And they're like: "No!" and they'll try to beat up the dragon. And like: "Oh, he just got stronger because you used violence. How can we defeat this dragon?" And then they have to— "What do you do against a dragon?" And they make the cross. So that kills one of his heads. And then they call on Jesus; they ask for Jesus' help. They'll say a Jesus prayer or something, and that kills another head. "Oh no, he's still got another head!" Then we go to Communion, and I say, "Look at him if you went to Communion." St. John Chrysostom says it's like lightning shooting out of your face when you go to Communion and hitting the demons. So they look at the dragon, and he dies. "Ahh!" And then this sheep can attack the dragon. So how can a sheep defeat a dragon? That's how, with those three things.

I do this hands-on thing, and that shapes attention. It's obviously kind of fun. Somewhere down the line people got this idea that having fun meant you weren't learning, and it's the opposite. You only learn when you're having fun.

Presv. Melanie: And enjoying it, yeah.

Ms. Kinard: That's the only way you could learn! So what I did is I went through— I talk about puppets, and in here I talk about cloths and how you can do your dress-up. I talk about making a sensory-friendly room. And I have pictures. I give a few examples of using props and stories. When we do the parable of the sower, we have a ball pit, and they get to— When they tell me something they do to prepare their heart to be the good soil, they get extra balls. They'll be like: "I go to church" or "I make my cross" or "I pray" or "Be nice to someone," and whatever else they do that's good, they get more balls in their pit to where they're all swimming in it at the end. Stuff like that. I have floor plans, how I've redone things.

I tell you the price points on stuff. If you want to— You could also do things without spending a lot of money, of course. This is one of my favorite classrooms. I've painted it blue and put a canopy inside and made clouds underneath it. That was St. Herman's forest. That was one of my favorites. That was a preschool class.

Presv. Melanie: You know, what kid wouldn't want to go into that environment? That's really cool.

Ms. Kinard: Exactly. And we had some wild kids who wouldn't stop jumping, so I padded the wall with a foam mountain, and then I put a crash pad in front of it, so they can go jump on it while they were listening to story. This is a book, Accessible Church School, it's on Amazon and it's on Park End Books' website. If you do go through Park End Books' website, though, I'm doing this thing since my girls have inspired me. We have tiny ritual schedules for dolls, the thing I showed you, the big version of it. And this is a visual schedule of the Divine Liturgy. It's different from those books, because the books don't actually lead you through the whole thing, usually, or you have to flip the page so you can't see where you're going. This supports executive function, because you can see your path, and it just flips and you can go through. It's not based on all the words; it just tells you what you're doing.

Presv. Melanie: You could put it in your pocket, right?

Ms. Kinard: Anyway, I'm giving these away to anybody who buys these this month. If you buy an Accessible Church School, I'm going to give you a tiny visual schedule.

Presv. Melanie: You've shared so many amazing things. And people can find more about your resources at Park End Books. I don't know if you want to list a couple of websites for them to visit.

Ms. Kinard: Oh, right! So, yeah, Park End Books has Accessible Church School. I do have Antiochian Archdiocese—next year's curriculum is going to be Luke and Acts. So I actually have a little— it's a six-lesson series that I'm going to be posting up on Park End Books in our accessible church school line, that is for junior high. And it is an interactive version of St. Luke's gospel, the sermon on the plain. It's called "Patristics for Kids," and it's based on St. Gregory of Nyssa's sermons on the Lord's Prayer. I made them interactive and fun for that group of kids who just really needs extra support to kind of pay attention. I'm going to be posting that soon on the Park End Books website.

And then on my website, SummerKinard.com, if you go there, I have a bunch of resources, free printables. That's the main places I would go, and I do have a hashtag. The hashtag is "AccessibleChurchSchool." That's all over social media. I do little tours and things like this for Instagram reels, like one-minute reels.

And my daughters and I are doing TikToks and Instagrams right now, the series called "The Autistic Barbie Goes to Church," where we're doing, showing how to fix classrooms that don't work. There's a few dramas in there, because the girls are involved. They have scripted out— One time they were both in a— One of them was in a bad classroom where somebody was mean to them, and they did the whole script, showing what we do differently, and we fixed it. Don't just show what's wrong, but show what's good. Basically, I'm going to be at the Christian ed conference in June at Antiochian Village.

Presv. Melanie: A panel of disability educators and theologians are going to be presenting at the Clergy-Laity for the Greek Orthodox Archdiocese in San Diego this summer. Yes, so, God willing, that will happen, and I'd be excited for you to be able to share with people on that platform. And then, God willing, next 2025, we're working on the disability conference as well with Fr. John Chryssavgis, so I think a lot of amazing things are happening in the Church to bring awareness and accessibility and acceptance.

Ms. Kinard: And it's so helpful to be able to spread the information, also just to connect, because we all know this is a life that can be hard sometimes and isolating, but there's so much joy as well, like when we bear witness to God. In some ways, I think it's important to remember that when we have a grief because we're lonely, that's bearing witness to the fact that we're not supposed to be alone and that God doesn't want that for us and that he's there and there's other people out there. We're going to fix this; we're going to figure out ways to connect, even if it's just one kinetic sand to another! [Laughter]

Presv. Melanie: Right. There are ways. There are ways, and with your heart and your searching heart and all of us trying together, we'll find those ways and not give up, because God doesn't give up on us. Our ministry at GOA Center for Family Care is titled "Fully Human." I wonder what your thoughts are on what it means to be fully human.

Ms. Kinard: So every time I hear that phrase, I always think about the glory of God as a human, fully alive. And I think about how that's something we can only do in community. But it's God's great love for each of us— I can't hear "fully human" without thinking about the Son of God, because that's the only One who is, and about the holy Theotokos. She was so fully in love with God that God became human with her. [Laughter] I mean, what!? So I just think about the holy Theotokos and about our Lord, and how we have so much love given to us always.

We have a tendency to want to look down or up or behind us or in front of us, like: "Oh, why is this ground before me cursed?" or "Why is the heavens not helping me?" or "How come my past is dragging me back? How come I can't see the future?" But in fact, God's alongside us, and that you can't necessarily see who's alongside you, the Paraclete, the Holy Spirit, but he's always with you. And that God always being with us: that's what makes us fully human. Our full humanity is not just something that we can do alone. It's always— It's the whole body of Christ. And that's the thing that gives me hope.

On the heat map of your body, your head's not going to be the thing in flame, like it is with anger or pride, but your heart is, like it is with love. So for those of you who don't know how to process emotions, your body heat map will show what your emotion is showing. And being fully human is when we talked about "lift up your hearts," and that's something that I think about a lot, that our actual bodies will show this process, this fact that we have love. When you love, your heart is literally warm. The heat map of your body is literally warm. And that God is here with us; he's among us. We can't necessarily see that; we don't see infrared. But that we love each other and that that's available to everyone; the love of God is available to everyone.

So being fully human would mean that we continually strive to live as though he's with us and to try to be like God. St. Anthony says, "Let Christ be as the breath you breathe," and "Every day I begin again; I will begin." And St. John Chrysostom: "Even I have not done anything good before thee. Do thou help me in thy grace to make a good beginning." So I think that's what it is. To be fully human is to always, always seek God, even if we're just beginning—again. [Laughter] Thank you.

Presv. Melanie: It has been beautiful hearing from you, and I'm very grateful. I am. Thank you.