Presvytera Melanie DiStefano: Welcome to Family Matters: Fully Human Edition. This is Presvytera Melanie DiStefano, and I am grateful to welcome Summer Kinard to our conversation on disabilities from a faith perspective.

Here is a bit about Summer. In vibrant, interactive workshops, Summer Kinard, who has an MDiv and a master’s in theology is also a mother of five, author, and a Christian editor of 30 years, brings together adaptable patterns of learning to nurture all students. Summer is the author of several books, including Of Such is the Kingdom: A Practical Theology of Disability, published by Ancient Faith in 2019, and Accessible Church School: Incarnational Practices for Participating in God by Park End Books in 2023, which gives real-life examples and photos of how to apply best practices for welcoming and teaching all students.

Summer serves on the Greek Orthodox Center for Family Care’s Fully Human steering committee, and the planning committee for the upcoming conference, “Gathered as One Body: Disability, Accessibility, and Inclusion in the Orthodox Church,” which will be held in Boston, May 1-4, 2025. Summer and her family attend Holy Trinity Greek Orthodox Church in Grand Rapids, Michigan. You can follow her work at SummerKinard.com.

Summer and her household are all autistic, and April is Autism Awareness Month, so it is very fitting that she will offer her lived experiences with us. So, welcome, Summer.

Ms. Summer Kinard: Thank you so much, Presvytera.

Presv. Melanie: So as an autistic person who is married to an autistic person and raising children who are autistic, you certainly have a wealth of lived experience to share with us. As far as concerns the whole body of Christ’s people, many of whom are neurotypical… Or what would you like to share? What is most important to bring awareness to the wider body about understanding autistic members of the body of Christ?

Ms. Kinard: I saw your question. Thank you for sending that to me so I could think about it. One of the things that came out to me immediately is: I’m here because I’m a Christian. I’m here because God called me. And then I thought, you know what might be helpful? And here you’re going to have to trust me that I’m going— I’m answering your question, because it’s weird. [Laughter] So there’s these differences in the neurology of neurotypicals and autistic people.

One of the things that shows up as a difference is the way that the chemical processes in our brain work and how we get the reward hormones and how we get the fear hormones: they’re opposite. So if you get neurotypicals together, they have a dopamine hit, they feel happier—maybe I’m saying the wrong word, but they get the happy chemicals whenever they’re around each other. Just from being around each other: you don’t have to do anything else. Just, boom, in a room together: you’re happy. It’s the opposite for autistic people. You put us in a crowd and we’re immediately really anxious, and we have the opposite; we have a fear response almost. Not like the amygdala, but you have the “Ah! Get out of here! What’s going on?” warning response.

And what that looks like— It sounds scary, like how can we get along? Until you realize that this is the same exact thing that happens with bees, so I’m going to use this metaphor. I tell you, I really am answering your question! With bees, you have the bees in the hive, and they have the same response as neurotypicals. They get a happy hit from being in the crowd, and that’s how they run the hive; the hive is very happy. And then there are the bees that go out and get the flowers, and those are different bees. Those bees are like autistic people. They have the exact same neurotransmitter responses. They go out; they will search and search and search until they find, and they don’t get frustrated. They’ll work over and over again, really hard, and they don’t get any of the happy chemical until they find the flower. So they don’t get— If they come into the hive, they’re nervous; they’re like: “Uh-ugh!” They go in there, they do their dance, they tell people where the flowers are; then they go back out and get more flowers.

It’s the same thing for us as autistic Christians. We love you. We have the same queen. We have the same queen of the holy Theotokos. We love her, we love Christ, but some of the things when we come into church are going to be a lot harder for us. We are outside people. We love people, but being outdoors or being in an environment that is really accessible is really important because we do not automatically read a crowd as safe. Our bodies will actually tell us the opposite. And that is hard-wired; we can’t change it. You can love people and not like being in crowds. I think a lot of people can relate to that even if they’re neurotypical; there’s a lot of us who are like: “Whoa. Crowds.”

And I feel like that’s important to know, because a lot of people say, “Well, just come to church. Just be with people.” And they don’t understand that you have to— Just like bees, they do dances and lay chemical trails, and they make a big effort to tell each other where those flowers are and how to come into the hive and where is my hive, not someone else’s hive, this hive, how does it smell or whatever. They have to do a lot of work to make that hive their hive, and I feel like we can do that for each other, too. The thing is, when you make the hive friendly to the flower bees, the whole hive thrives, and it makes it much better for them as well, because they’re doing all the best practices. They’re making sure to communicate, they’re making sure everyone has food and the proper temperatures, and everyone knows where they need to be. And I just feel like that’s a really great metaphor for how do you think about autistic Christians.

It’s really important not to see us as a sideshow. That can really feel like what’s going on a lot of times. We don’t come there in order to be weird; we’re just having to accommodate being in such an unfriendly neurological environment. And we’re there because of our love, for God and for y’all, you know, for each other. I think it’s like people go to church—they don’t do it because they’re like: “I don’t have anything else to do for three hours on Sunday or four hours on Sunday. I’m just bored; I’m going to church.” No one does that! I think everyone understands they’re going there out of devotion, and it’s good to know that the people who are coming there with you, to assume that good intent, even if they have to do some different things because they’re flower bees. Flower bees are helping the hive. If you don’t have those flower bees, you don’t have honey. But those flower bees cannot hang out in the hive the same way.

I go to church and I love people, and I absolutely cannot sit in coffee hour with fluorescent lights and loud noises and I don’t know where I’m going. It’s not that I can’t read social cues, because I’m 47 years old, and I’m an adult, and I have a lot of emotional intelligence and empathy, so I can read social cues. I just don’t assume naturally, like other people do, that I’m invited. I do not have the thing in my head that other people do that says, “Oh, you’re automatically welcome and invited.” I don’t have that. There’s no auto-on. [Laughter] I would have to be invited specifically before I’ll go somewhere, and I think that kind of recognition is helpful, because there are some people who are— I’m sorry for going back to bees, but it really helps. There are bees that are greeter bees, and those bees bring other people to each other, other bees to each other. And those greeter bees, we have people in the Church like that, whether they’re neurotypical or not—they probably are, though—they really make a huge difference, and I think they make a huge difference for neurotypicals, too.

You come into a strange place or you come into a place where you’ve always been, and you want to know where someone is, and they’re paying attention to who everyone is and where they are: those people are just a gift to the Church. I feel like when we talk about the whole body of Christ, the connective tissue between the body of Christ… Sometimes you have to do more of that in order to incorporate people who have different needs. When I go somewhere— We used to always say, “Find the Helens,” because there’s usually a lady named Helen who’s working in the kitchen and in the bookstore or the Marias or the Catherines or whatever. And we’ll go and we have to visit somewhere: who’s our Helen? Who’s our person that we can go and find and she knows what we’re supposed to do and she’ll tell us, “Oh, I signed up for coffee hour, but I didn’t know it’s a fast. Can I bring half-and-half or do I just bring that weird I-don’t-know-what-it’s-made-of peas?” [Laughter] And Helen will be like: “Everyone fasts differently. Bring anything you feel called to bring.” And you’re like: “Oh! Thanks, Helen.” Like, you need someone to tell you that sort of thing. And you need somebody to bring you in.

One of the things that is really helpful for people— If I wanted people to know something, I would want them to know that you have to reach out to us, because we’re there and we like you, but we also are really used to being rejected or misunderstood, like so misunderstood. I’m very curious about people; I love people. And a lot of people mistake my attention for being snarky or arrogant, and I’m just paying attention because I find them fascinating, and I don’t want to be weird about it. My attempt to not be weird about it looks weird. [Laughter] So I don’t know.

There’s a thing called masking, where you try to hide how big your heart is, is what it really is; where you try to not be too much for people. And that’s what most people who are autistic are coming into the Church, and they’re probably coming out of a place where they’re masking, and they’re like… If they meet etiquette person instead of the Helens, and they’re like: “Um, you have to stand here and do this and do that,” and you’re like: “Okay…” And they’ll do it, but they’ll also feel: “I’m not welcome here. I could never unmask.”

My kids all have interests they love. One of them loves trees. He’ll tell you about forests. He knows so much about trees. And he’s just a normal kid, right? And he’s just not neurotypical. But he has so much joy about trees. He’ll talk to you about them. Another kid loves Lord of the Rings, and she would love to talk to you about that. And then I have my interests of theology and accessibility, and I’m just like: “Don’t say anything. People will get the wrong idea.” So if I visit another Sunday school teacher’s class, I’m like: “I love what you’re doing here.” And I’m like: “Please don’t ask me.” And they’re like: “Oh, do you want to help?” I’m like: “Don’t ask me to help! I’m a weirdo about this one topic!” [Laughter] I’m like: “I think you’re doing great. Have you considered taking out your table” or whatever; “what if you put this on the wall.” I always feel like I’m having to rein it in. That’s something that a lot of people do.

There’s a stereotype that everybody autistic is really quiet, and that’s not true. We have all the different types of personalities. Even in my family, I’ve got some extreme introverts and some very extroverted people. One of my sons, he would be, in the old way of talking about autism, they were talking about severity levels, and now we just say different processing and different needs and things like this. So he would be the one who was a higher-need person. He is incredibly friendly. He loves everybody; he wants to hug everybody. It’s not just an introversion/extroversion thing, either.

I feel like in the Church one of the ways that it’s easier to get involved than in places that necessarily have the structure laid out even is because there’s this sense of welcoming the stranger, philoxenia and hospitality and welcoming angels. I really felt the difference when I go to a place where people hold that idea. But whenever they come to you and they treat you like you’re really welcome, and they come to you and they say, “You are welcome,” that makes a big difference, because I’m like: “I don’t know that they want me here.” I don’t assume that they do, because I’m a flower bee. I’m not… I don’t assume that I’m wanted anywhere. Part of that’s trauma from growing up like… getting rejected a lot, but part of it’s just not knowing. So I can heal the trauma but also just be like—who knows? Maybe I’m just passing through; I can’t tell.

I don’t know. I know that’s kind of a long answer, and I sort of answered two of your questions, but the sort of bee mentality and how we fit in, what are we bringing: I think it’s really important. We may look a little different in how we have to accommodate our sensory needs, because they’re quite different. They’re made for seeking deeply and strange corners. We’re good at finding the lost sheep. We’re good at people on the edges. We’re good at making friendships with people who are a little bit weird, because we’re not frustrated easily. But at the same time, we cannot tell how much we have to fit into a rule in order to be part of the system.

So it’s kind of an interesting thing, and I feel from what I’ve observed from neurotypical people is they have a very wide range of tolerance for how weird you are, but they have a lower frustration tolerance. So neurotypical people are actually really welcoming for the most part, but if they don’t understand you the first few times, they usually stop trying. So sometimes we get a mismatch, where it’s like: “Oh. I don’t know what you’re saying. Why do you crochet in church? Or why do you wear those headphones? Or I’m trying to talk to you but you misunderstood what I said? Or I said something and you forgot to use your improvisation skills to say, ‘Yes, I agree with you and also I’m adding to it.’ ” [Laughter]

A lot of times there’s a miscommunication on that. Autistic people, if they love a topic, they’ll jump right in: “Oh, you love this topic, too? Let’s talk about it.” And that gets misinterpreted by neurotypicals who have a whole social structure around giving information that’s ranked. It’s not ranked with autistic people at all. So if you love a topic and I love a topic—I always feel weird about this in meetings—I’m like: “Oh, I have to stop. Wait. ‘Thank you for your work. I am agreeing with you.’ ” [Laughter] I have to say that, because to me it’s obvious. “Ah, I love what they’re saying! I need to add onto that.” But if I don’t stop and say, “I am agreeing with you,” or “Yes, and this…” sort of the improv thing, then people will wildly misunderstand me and think I’m fighting with them, and our basic assumptions about how interactions go are different.

I don’t usually go to Bible studies. I love to study the Bible. I read the Bible a lot, every day, but I don’t go to Bible studies because I’m 99% sure I’m going to show up there and someone’s going to be talking about something that’s in my area of interest, and if I accidentally don’t say, “Yes, and,” one time, or if they say something and I’m like: “Well, here’s this way that it’s been interpreted that I thought was beautiful,” they’re going to be like: “They’re attacking me!” And I just can’t. So I tend to find myself in a role as a teacher, just because I am flexible in thinking, and I don’t care if someone comes in with a crazy idea. Well, we’ll examine it and see if that fits, and if it doesn’t, we’ll toss it out and we’ll move on; and if it does, we’ll be like: That’s an interesting idea, and I’m fine with it, because I’m autistic and so I’m not going to feel like a conflict in ideas is somehow a conflict between us. That’s not the same way that neurotypicals are.

There’s lots of little places like that in the Church where I feel like you really have to kind of be aware of your own strengths and weakenesses. I think one of mine is definitely… It’s not that I’m a bad follower. I’m fine with being on a team, but I am more like a team person. I never— I don’t see rank in people. Like, I will defer to people and I will revere people, but I don’t have ranks of people. I just don’t. I don’t have that. I have absolute justice. One of the things that appeals to me about faith is the impartiality of God’s love. I love that God loves absolutely everybody the same, even the people I don’t like. I can never believe my own lies or get caught up in myself, because I know that if I don’t like someone, that’s silly, because God loves them so much. He loves everyone the same. And this kind of thing, this great love of God: that’s why I’m here! [Laughter] That’s why all— I make the effort.

And that’s what I see in the Church, too, that everyone’s making the effort. They’ve tapped into this, this love of God, this incarnation of Christ, who is bringing us all together, even his little weird bees and his little normal bees. [Laughter] The hive of Christ or whatever!

Presv. Melanie: I love the bee analogy, and I feel like it’s just a different role, like a different gift. So I like that perspective of: These are just unique gifts that a certain group of people have to add to the body and to add to the production of the honey, sweetness that will attract people to God. So much of what you said I think will very much help people understand. In fact, I’ve had a child with autism; he’s almost 20, but just you framing that response to a crowd is wired differently is something I had never connected with before. I always knew his sensory issues might interfere with being in a certain space or crowd, but the fact that he perceives it as threat, without knowing for sure that he’s in a welcoming place, really is helpful. I think it could really open up communication and understanding, so I really appreciate that. Thank you.

Ms. Kinard: Thanks. I got that— So I was diagnosed as an adult. It was— When you’re diagnosed as an adult, you go back and you look at your childhood, because it has to be from childhood; otherwise… It’s not like you just turned weird in middle age! [Laughter] Some people get that impression. I’m like, well, maybe I did. But whenever I went back, it was so obvious. As soon as I learned what autism was, this was one of the reasons I wasn’t afraid when my kids started getting diagnosed. I said, “Oh! That’s me! I’m obviously autistic.” We didn’t have a word for it. So I was able to empathize with them immediately. It was such a relief to find that language and to find the diagnosis.

And because I’m autistic and I’m a scholar, I just dove deep and learned as much as I could. I went to my SLPs—that’s a speech-language pathologist—for my kids and their occupational therapists, and was like: “Teach me everything!” I went to the speech-language pathology conference. I actually gave a paper at one of their conferences, even though I had only been— I had a kid who was two, and I learned so much in so short a time that I presented at their conference! So that’s weird. I don’t expect other parents to do that, even if they’re autistic. That’s just my way of processing the world, is to be a deep reader. I am a savant, so that’s rare. However many people are autistic, and then five or ten percent of us are also freakishly fast thinkers on some subject. Mine is learning. I don’t know how else to describe it.

I didn’t know this about myself. I just assumed—and I still think it’s true—that it was a spiritual gift of knowledge. And this happens— I see it in my kids sometimes, and that helps me see it in myself also, where I’ll be like: “Oh my gosh!” I’ve done this before with friends. “I wish I just had friends!” My husband’s like: “The friends you just hung out with, just now?” I’m like: “… But are we friends? How can you tell?” [Laughter] I have these parts of my brain that are just perpetually question-marking. They’ve got the little “Who knows?” and I’m like… I’m just trying to—

We call it Autism Acceptance Month, not Autism Awareness Month, and I try to accept myself this month, too. I’m going there and I’m like: “Aw, man, just accept it. Accept it.” [Laughter] That I’m going to have some things about me, where I’m just going to have to ask. And sometimes I have to ask my friends; I’m like: “Hey. I’m asking you this because I can’t tell, not because you did something wrong. Are we friends? We are, right? Or if we’re not, it’s okay to say no.” And they’re like: “Wha? Of course we’re friends, you big weirdo!” [Laughter] I don’t really have to do that any more, but when I first was diagnosed—I can’t remember how many years ago that was—when I started going through and unmasking and stopped trying to pretend I knew what I was talking about when I didn’t, basically stop having anxiety and just ask for help, that’s a big thing that you have to learn to do if you’re autistic, is to learn to ask for help, because it’s not hard-wired in.

When I started going through— I went through almost all my friends. I was private messaging them. I’m like: “Are we friends?” “Yeah, we’re friends.” I was like: “Sorry, just needed to check, wasn’t sure.” [Laughter] An analogy: One of my kids— I have two kids who are hyperlexics. That means they learned to read, and I didn’t do anything to cause that. They just did. Yeah, so Basil is my one that I wrote about in Of Such is the Kingdom. I wrote about this, how they came to me and said that he didn’t have any cognitive or whatever functioning, and I was like: “You’re wrong.” [Laughter] And they were like: “What?” I was like: “You’re wrong, because when he was six months old, he was singing an Aghios, because we’re Greek Orthodox. He was singing in the middle of the night, sound asleep; he was sitting up, cracking up laughing, and singing with so much joy, ‘Aghi-, aghi-’. He was trying to say it; he was a baby. And he was like… ‘It is, it is, it is,’ he was saying. He was talking about the existing One.” I was like: “He’s a baby! No, this kid has function; we just need to find it.” He would go around, and he could hum in perfect pitch. I always played Jane Austen movies in the background just so I had something calming, and he would just hum in perfect pitch the exact things, and it was so beautiful.

So I told them they were wrong. It’s something I feel like not everyone knows to do, but I just knew. I think a lot of times mothers are the ones who are like: No, we’re going to fix this; we’re going to fix this kid. What I knew I needed to do was reach him. I knew that I needed to reach my kids. You have to connect with them, because communication is partnership. You have to reach them, however that is, with joy. I heard the Louhs. They just had somebody on talking about having an autistic kid a couple of days ago, and I remember listening to that, and the mom said something about connecting with joy, and I was like: Yes, exactly. You connect with joy.

I remember feeling like I wanted to get in touch with my kids, and I just went and I prayed. I was like: “You know what? I know Jesus. I don’t know what they were talking about, but I know they’re wrong, and I don’t know how to do this.” This was before I did any of the deep dive, and I begged. I was like: “Look, you taught St. Anthony to read, so teach him.” And then the next day my son goes over with his magnets and spells hodegetria. [Laughter] In his magnets! And we were like— We looked at it and were like: “That’s crazy.” We just watched him do it, and we were like: “Can that be an accident?”

Presv. Melanie: Possible? [Laughter]

Ms. Kinard: Yeah, for people who don’t speak [Greek], that means “she who shows the way,” or Directress. This is the icon that you— The Seventh Ecumenical icon right there, that you have to believe in. So he goes and writes this, and we were like: Okay… We made our cross. We were like: “Let’s just make sure and see we’re seeing…” It’s so unlikely that this is an accident. The next day, he goes over and spells “go downstairs.” He wanted to go downstairs and play in our yard, and he wrote that out of magnets, and we were like: Okay. He couldn’t point yet, he wouldn’t answer to his name, he wouldn’t pay attention to things yet: we didn’t know how to shape attention, which is actually what you’re shaping, is attention; it’s not even about all the stuff people think it’s about. It’s just attention. And that’s why I write about attention in these books, because that’s where it’s at for everybody, and that’s how we pray also. I think— I’m actually giving a presentation sometime at that conference, that disability conference, about the will and attention and how we shape that, theologically, and how God is there with us, because the highest form of attention is called triadic. It’s in the image of the Holy Trinity; it’s where we share attention.

I didn’t know that at that time, but I did see what the child was doing. So thank God we had this amazing therapist who taught us how to use language supports like using— Here’s a language communication board. It’s called a core vocabulary board. By using these things and pointing— I think our word is “go” on here, or— So we used “go,” and he learned how to talk by pointing to “go,” so we would zoom him around. From there, all of a sudden he went from one word to his little logarithmic scale, and he was able to talk. This is called AAC or alternative and augmented communication. This sort of method, you can do it low-tech with paper, or your can do it high-tech with devices. That really builds people’s communication, no matter when they start it.

So at that conference, I went and presented it with my kid, because I did such a deep dive, and we did so many things with success on his AAC stuff. I actually heard from a young man who was in college. He was autistic and had cerebral palsy, so he had a couple of different challenges for communication. He started his speech-output device in what’s called language acquisition through motor planning, which is either using paper or a device to use movements of your body to find things in a stable grid in order to go to your language. And it also builds your executive function to have something reliable that’s right there. He had learned this—he didn’t get this until he was 15 years old, and all of a sudden he went from being considered extremely intellectually disabled to being a college student. I mean, and he was just a brilliant young man; he just didn’t have access to the communication.

What I had thought with my son was, whenever I saw that first report from him I said, “No, you’re actually measuring how well he can answer your questions verbally right now. You’re not actually able to answer your question, by your test, with what’s going on inside of him.” So, using that framework, of “I don’t know what’s going on inside of you; let me try to build a bridge,” that’s what I did with my kids, and that’s what I do in churches, is I make the assumption that I know, I absolutely know, that Christ is present to everyone, and so if I want to reach somebody and want to communicate with them, I just have to find the path. And what does he do? He’s always there with them, so I’ve just got to follow him, and it’s hard. It’s not easy, and I get it wrong a lot. I just don’t stop trying. I just never stop trying, because I’m a flower bee. [Laughter]

I have this— I’ve had some kids who’ve gone through phases. The idea that you’re either speaking or not-speaking is not actually accurate. A lot of times people are speaking sometimes and not speaking other times. That could be not just situations, but it could also be your growth spurting. When kids are growing, their brains get scrambled a bit, even if you’re neurotypical, and it’s a lot harder whenever you never shed synapses. So autistic people don’t. So instead of having “okay, clear this neighborhood out and we’ll put in a highway here; move this forest, we’re putting in a highway,” the forest stays, the neighborhood stays, and you’re trying to build a highway on top of that. Everything is instant. It can be really hard to navigate through those growth spurts. I get that idea, and so sometimes you have to work really hard.

I told people this past year; I was like: “You know, I’m not going to be able to get things to you on time very much because some of my kids are going through growth spurts, and this is what I mean. Sometimes I need to spend five hours, from 10 p.m. till three o’clock in the morning, on bedtime routine in order just to get one sentence communication with one of my kids, because they just need that; because I’m a flower bee and they’re a flower bee, and I have to connect with them. That’s my job as their mom. And sometimes that’s what happens. It’s not like pulling teeth. So I may laugh with them, I may tell them stories, we’ll do our prayers, we’ll make up stuff, I will go through and be silly, I will sing with them, we’ll do all sorts of stuff—we’ll just go through it until we get some point of connection that they can grab onto and I can grab onto, and I’m like: There. There we are. Christ is in the midst of us. He is in our midst, you know? And then we find it, and that is such a gift!

People ask, “What do you want to—? How do you want to—one or two things?” And it’s like: It’s not one or two things; it’s everything. God is with us. But if you make that assumption, if you study communication and how you partner in communication, how you get each other’s— how you share attention— Because it’s not just me going up to you, saying, “I need your attention, Presvytera Melanie!” It’s also maybe I’m paying attention to you, and you’re telling me about something, and the moment we’re going to click, though, is when we’re paying attention to something together. Or if we’re praying together and then all of a sudden it’s like—boom: God is there with us. And then you have this communication. Communication is not ever something you can do by yourself. That’s one thing about it that I love, is that it is such an incarnational thing.

I do a lot about sensory needs, because we do have sensory differences, but also because you shape attention through your senses. But the goal is always that connection with God. And this world was made by God, and it was made so that we can know him. And then he became flesh so that we could know him. [Laughter] I just love that the Fathers are so blunt about that.

Presv. Melanie: Just a couple of reflections on what you shared with us. First of all is the attention thing, the building attention. Somebody told me that, in recent studies— So the typical attention-span for the average person in America, 20 years ago, was seven minutes, and now it is more like 20 seconds. I’m probably wrong with the numbers, but it has— Our attention is so hard to keep. What the Fathers call that in prayer is nepsis or nepsis, that focus, that— like you said, and I liked the way you framed it: when we’re focusing on the same thing together, that communion, really, in prayer, with God, with others, is just— It’s how we’re made, no matter if we’re neurotypical or atypically neurologically wired. So I think that’s important to keep in mind, even for us as parents.

The other thing that I think is a gift to you for us parents who are neurotypical—and as you were talking, I’m thinking to myself, “I might be autistic…” [Laughter] Because so much of what you shared, I can resonate with! But in any case, it does help, because you have such an insight, and you understand. So for us, a lot of our grief—and I hate to use that word, because I don’t want children to misunderstand—

Ms. Kinard: It’s grief, yeah.

Presv. Melanie: —and that we don’t love our children or we don’t— But there are losses that we all have in life, of expectations or hopes, but so much of that pain that we experience is partly because we don’t understand what’s happening in our children’s bodies and how they’re seeing the world and connecting. And like you saw—you knew—there was intelligence there, whether your child could speak verbally or not. So that’s really important for us to remember. And also that things can change and develop.

I also want to just say what a gift that you have, and a choice, because it is your free choice, to spend hours to try to connect with each child meaningfully. So that is a lot of work, and I probably would fatigue way before you in doing that. Not that we don’t try to be— We’re constantly trying to be silly, we’re constantly trying to engage and connect, so we’ve found over the years what Michael connects with, and we go with it, but it does take some trial and error, right?

Ms. Kinard: Good! [Laughter] Yeah, that’s the goal.

Presv. Melanie: Right, exactly. So just encouraging other families to keep trying. Maybe you all are like me and are limited in your ability to try as long as Summer might try…

Ms. Kinard: No, it doesn’t usually take that long. And this is the thing: When I’m trying to find out what that person’s saying, I’m still connecting with him the whole time. So I’m making that kid laugh. And that’s the thing I would encourage you to do. If you can laugh with your kid twice a day, then they will have significant— There’s actually studies on this; I’m not just making this up. They don’t say “laugh”; they say “connect joyfully,” but whatever. So five minutes in the morning, five minutes at night, if that’s all you’ve got, but if you can get it up to 15 minutes twice a day, the neurological abilities, like the ability to connect and self-regulate, it just skyrockets.

I know! You would think it would be something magic, like: “I’ve go to therapy and learn how to point at stuff,” or “I’m going to make them go to the bathroom”—no. The thing that— You may have been working a long time, for years, to make him go to the bathroom or to eat the things or whatever. That can be ongoing. I mean, it’s still hard for me to remember to eat. I had to go to eating disorder treatment because I actually didn’t eat. You can’t tell, because I’m chonky, but I actually had some trauma in my past, but I also just didn’t remember to eat, and I had to learn how. I’d be like: “Why do I feel so bad?” It didn’t occur to me to eat food! [Laughter] I’m like: “Why do I have a headache and my stomach hurts and I can’t sleep…” Yeah, because I was starving. It was like… Okay? So that kind of thing may take forever—not forever, but you may have to struggle with that your whole life. Keep working on it; those things come and go.

But if you can laugh with your kid for 15 minutes, twice a day, they’re going to be okay. And if you just know that, that’s a big deal. That’s a thing that you need; that’s what they need. Connect with them, 15 minutes, twice a day, and that’s the gold standard.

Presv. Melanie: Yes! And please, we cannot reinforce that enough, because I made the mistake, especially when you’re nervous about your child acquiring a goal, a milestone, and you’re driven, you can get stressed—they feel your stress. There’s no joy in that when you’re pushing so hard, but if you’re doing it joyfully, if it’s a connection process, it makes all the difference in the world. Just to have, share common happiness together, in whatever way that works for each family: so important and life-giving to every member of the family.

This concludes Part One of a conversation with Summer Kinard. Tune in next month to hear more from Summer on autism awareness and acceptance.