Presvytera Melanie DiStefano: Welcome to Family Matters: Fully Human Edition. My name is Melanie DiStefano, and today my special guest is Charlotte Riggle, also known to her friends as Charlie.

If you have Orthodox children, you have probably read Charlotte Riggle’s picture books, Catherine’s Pascha and The Saint Nicholas Day Snow, and you probably noticed that Catherine’s best friend, Elizabeth, has a mobility impairment. Charlotte is a passionate advocate of disability representation in children’s books and of disability inclusion in the Church. For her, it goes back to the virtue called “philoxenia”: love of strangers. Besides her picture books, Charlotte has written a chapter in an upcoming book of saints for single moms. The Grace of Being There is the title, which will be out later this year. She’s also working on a collection of the lives of 40 disabled saints, starting with St. Seraphim of Sarov and ending with St. Thorlak of Iceland.

Charlotte and her husband, Alex, are members of Holy Apostles Greek Orthodox Church in Shoreline, Washington. Charlotte and two of their children are autistic. Alex and three of their children have ADHD. Among other conditions experienced in their family are migraines, asthma, celiacs, dyslexia. This lived experience has contributed to her work as an accessibility professional and a disability advocate.

So good to have you with us, Charlie. Welcome.

Ms. Charlotte Riggle: Thank you, Presvytera.

Presv. Melanie: Your family has really lived a deep experience with disabilities. Could you elaborate a little bit about your family diagnoses?

Ms. Riggle: Sure. So my husband and I have five kids between us, so in our family it’s seven of us, with a wide range of disabilities. We used to joke we could probably go through the alphabet and fill in a condition for every letter. [Laughter] The thing about it, though, all the disabilities in our family are what people call invisible disabilities. So when somebody uses a wheelchair, or if somebody has a limb difference, you can see it, and you understand, at least marginally, what’s going on, and maybe you have some expectations that are maybe in the right ballpark for that person. But with invisible disabilities, you don’t know there is a disability there. And with a child, and even some adults, the disabled person themselves might not know they have a disability.

A lot of conditions that are regarded as invisible disabilities initially present as, well, personality quirks or as difficult behaviors. So the child born with a limb difference: everybody understands right away what’s up. You just have to figure out how to deal with it. But a child with ADHD or autism or Ehler-Danlos Syndrome may not be initially understood as having a disability. Their behavior is different, so they’re understood to be difficult. They’re ill-behaved; they’re rebellious. People who use less kind language might call them brats, and they might consider you a terrible parent because if you were a “good parent,” your six-year-old child wouldn’t interrupt adult conversations all the time. If you were a “good parent,” these behaviors wouldn’t exist.

And it can take years to work out what’s really going on, and you can’t always work it out all at once, because a lot of these developmental conditions and neurological conditions, you end up not with just one of them, but with a bunch of them. So to figure out what’s going on, it’s like peeling an onion. You figure out one layer, and it’s like: “Okay, I’ve got this worked out.” And then there’s another layer, and another layer, and by the time you work it all out, your child might not even be a child any more. And by the time they’re grown up, they may have lived with so much judgment and rejection that they have internalized the idea that they’re rude or bad or lazy, that they feel of themselves that they have these deep character flaws, and it takes a long, long time to understand and get over that. I don’t know that everybody ever truly gets over it.

Presv. Melanie: That’s a really great analogy, sort of peeling the layers of an onion away and trying to figure out how to help each person with their specific needs and challenges. So in that struggle, how have you grown closer to God?

Ms. Riggle: There have been challenges, for sure, and I think, coming from a family that’s wrapped in the disability experience—I mean, I don’t know how to experience life any other way—it is a blessing, but not maybe in the way that folks expect. I think often there’s this perception that if you’re dealing with disability there’s something spiritually magical about it, and you’ve been given this hard burden so you’re going to have all these wonderful, mystical experiences and be drawn closer to God and into your community. Maybe that happens sometimes, but that’s not been my experience.

My journey closer to God as sort of been tangential to the disability experience. I wasn’t raised Orthodox. My family was Presbyterian when I was a child, and when my oldest child was a baby, there was a little Lutheran church that was directly across the street from the entryway to the apartment complex we lived in, so: new baby… it was amazing to just be able to go to a church that was that close. And in the adult education program, we spent some time studying Luther’s Small Catechism, which was written for children, but it was a really cool resource for adults. A portion of The Small Catechism covered the Ten Commandments, and when we got to the commandment, “Thou shalt not bear false witness”—this is going to sound crazy, but that was really a pivotal experience in my spiritual life.

Luther said that “Thou shalt not bear false witness” doesn’t mean just that you don’t tell lies about your neighbor. It means that you should fear and love God so that you think and speak well of your neighbor, that you defend them, and that you take the kindest possible interpretation of anything they do. And that hit me. I mean, like a slap upside the head! I knew I didn’t do that, that I didn’t always speak well of other people. Yeah, I was deeply judgmental. I would see people, make assumptions, and not always kind assumptions; gossip, but I didn’t consider myself a gossip. But when I started looking at what would come out of my mouth about other people and how I interpreted their behavior, it’s like: “I don’t do that!”

And doing that—defending people, speaking well of them, thinking well of them, and interpreting what they do with kindness—here is this book that’s telling me that that’s part of fearing and loving God. And so that understanding of the commandment became for me something like the “words” that the monks of the desert would get from their spiritual fathers. I didn’t know anything about the Desert Fathers at that time, but later, when I learned about the monks going to their abba in the desert and asking for a word, and their spiritual father would tell them a single thing that they needed to work on, and they would go away, for months or years or maybe the rest of their lives, before they would come back for another word. And that was how that hit me.

And I didn’t understand entirely… Well, I didn’t understand at all how thinking and speaking kindly of our neighbors and how taking the kindest possible interpretation of their actions was tied to the fear and love of God. I really didn’t understand the connection there, but I knew it was true. I was actually Orthodox for a long time before I understood that this was one of the implications of the Incarnation. In the Orthodox Church, we’re wrapped in incarnational theology, because our experience of worship is so physical, and our understanding of God himself, the Incarnation, is the root of our relationship with God, the focus. And because God took on human nature, everything we say or do touches him. He told us that explicitly, that whatever we do to another person, we do to him. So when we judge our neighbor or think ill of them or assume that their behaviors are because they are evil people, because they’re bad or cruel, when we treat other people that way, that’s how we’re treating God. That’s why we have to think well of our neighbors and refrain from judging them.

A few years after that experience at that little Lutheran church, I became Orthodox. Gosh, that was a long time ago now! And I went from somebody who was raised Presbyterian… And Presbyterians don’t do saints. And as an Orthodox Christian, I fell in love with the saints. Just learning about the saints, reading their Lives, reading their writings was such a transformative joy. And I started realizing that the saints talk so much about not judging our neighbors, and I got a copy of the writings of St. Dorotheos of Gaza, and his homily on refusing to judge your neighbor was so eye-opening, and it’s been such a help to my struggle to learn not to judge. If I had not become part of the disability community, if I didn’t have disabilities in my family and my own disabilities, I think learning not to judge would be a much harder struggle. And I’m not ready to say yet that I have accomplished that word and that I’m ready for another one. I’m not there yet. [Laughter] But I think that the experience of being in a family with disabilities has been a major help to me in learning to accept and love people just the way they are.

Presv. Melanie: Wow. You had an “aha!” moment, a “God” moment.

Ms. Riggle: Yes, yes!

Presv. Melanie: My bishop of blessed memory, Metropolitan Maximos, would say, “The Holy Spirit zapped you.” [Laughter]

Ms. Riggle: Yeah, and God can zap you anywhere! I was in a little-bitty Lutheran church, and, bam, I was zapped!

Presv. Melanie: Yes, you were zapped, and zapped good, because you’re still ruminating on what he gave you. That food is rich, and it takes a long time to digest. I love that you can see it as a similarity in how those spiritual fathers would give their disciples a word to ruminate on. So it’s very profound.

But the other thing that I also wanted to comment on is the fact that having disabilities in your family does make you less judgmental. And I just want to segue into an experience of my own where learning—and I’ve heard you say this before as well, that behavior is communication.

Ms. Riggle: Yes, yes, yes, it is!

Presv. Melanie: And when we start to examine any person’s behavior, instead of judging it, we start to learn what they’re trying to communicate, and there’s always a basis of pain when it’s a negative behavior, or some kind of need not being met. So to look at it that way and starting to see my child’s behavior in that way, because of having to learn how to cope and to be a sympathetic and loving presence for him instead of chastising him because I mistook his behavior for rebellion or disrespect and that kind of thing, it became an eye-opening… in how I look at a group of people’s behavior and every individual’s behavior. So I really love how you describe that.

Ms. Riggle: Thank you.

Presv. Melanie: One of the things that I really want our listeners to learn more about is the giant cookie test. Can you tell us about it?

Ms. Riggle: Oh my goodness. The giant cookie test is probably the most valuable tool in my parenting toolbox. That’s one of the things, as you know, when you’ve got kids with disabilities, the standard parenting techniques aren’t always useful for you. When my kids were young, before we had really started peeling the onions, we had difficult behaviors, and I think I read every parenting book out there. They just… they weren’t helpful. [Laughter] They didn’t work with my kids.

And somewhere along the line, the online parenting community I was part of, we started talking about this giant cookie test, and some of the people in the community think I came up with it. I’m not sure that I did, but it was a tool that grew out of conversations that we had, and it is so valuable. And it really is about treating your child with gentleness and curiosity rather than judgment, because, honestly, when you tell your child to do something and they don’t do it, your very first assumption—well, maybe not yours, but my assumption—was that my child was refusing, was that they were being disobedient, that they weren’t doing what I wanted them to do. I believed that the problem was that they would not do what I said. But what if the problem was that they can’t?

When I started realizing that the problem was sometimes “can’t,” I needed to figure it out; I needed to understand whether it was “can’t” or “won’t,” because you have to approach your child differently if you tell them to do something that they can’t do, that’s just, like, crazy? [Laughter] If they won’t do it, then maybe you put them on restriction, maybe you do all kinds of other things—but you have to know whether it’s a “can’t” or a “won’t,” and that’s where the giant cookie test comes in.

So the place where it’s easiest to differentiate is motivation. If a child won’t do something, if you provide sufficient motivation, then they will! And it’s hard to tell by looking at a child, if you tell them to hang their coat up and they don’t do it, it’s really hard to tell if they’re having a difficulty doing it or if they’d rather just go play on their computer or play with their toys. So you take the motivation out of the picture, and then you’ll be able to see what their abilities are. So the way to take the motivation out of the picture is to offer them something to do the task. Let’s say the task is hanging up their coat. You offer them something that is big enough—“If you do this, I will give you a giant cookie.” So if they’re a three-year-old, the giant cookie might be literally one of those skillet-sized chocolate-chip cookies from the grocery store bakery, because for a two- or three-year-old, that’s a pretty big motivator.

Presv. Melanie: Right! [Laughter]

Ms. Riggle: If your child’s a little bit older, it might be a pack of Pokémon cards or whatever the equivalent currently is for that age. But it’s something that you know the child really, genuinely wants. And you offer them that for doing the task, not as a bribe, not as a payment for the task, but simply to take motivation out of the picture. So then if they then don’t do it, you know it’s not “won’t”: it’s “can’t,” because if they could do it, they would have in order to get the giant cookie.

The most important thing I learned from the times I used the giant cookie test with my kids is that it was never, ever “won’t.” There was never a single time when they could easily do whatever it is that I wanted them to do, not once. It didn’t matter how big the giant cookie was. They never were being rebellious. They were never being defiant, even if that’s what it looked like. Sometimes it was literally impossible for them. Sometimes it was so difficult that, well, they could do it, but instead of it taking five minutes like I expected, maybe it took them 45 minutes or an hour and a half, and by the time they were done, they were shaking, they were trembling, they were sweating: they were just utterly exhausted. When they refused, they weren’t being bad; they were just… It’s like you ask them to do something that is going to utterly exhaust them for a long period of time and make them feel like a failure?

Presv. Melanie: Right.

Ms. Riggle: I began to understand that when they said no, it meant they needed help.

Oh, and there was a third thing that happened sometimes! Occasionally, even with the motivation of the giant cookie, they would refuse to even try. And what I understood from that, that meant that the child was so convinced they couldn’t do it that you could have offered them the moon and the stars, and there was no reason for them to even try. It would be like if you told me you would pay me ten thousand dollars if I would do a series of cartwheels across the room. [Laughter] I would not even try!

Presv. Melanie: Charlie! [Laughter]

Ms. Riggle: No, I can’t do that! And sometimes that’s true. Sometimes your kid’s self-assessment… There’s no point in even trying. So the giant cookie test has made me a far more compassionate person, more compassionate towards my children and more compassionate towards other people. It helps me understand that children—well, and adults, too—don’t need to be punished. Children especially, they want to please you. They will do well when they can. Like you just said, behavior is communication. And when they aren’t doing well, they’re telling you something. They’re telling you they have a problem they don’t know how to solve or skills that they don’t have. And our role as parents is to help them to figure it out and to support them as they either learn the skills or… Sometimes we accept that those are skills that they might not ever have, so, you know, we help them work out work-arounds. And all along the way, we just love them.

Presv. Melanie: Amen. I will just add one thing to that that I also learned from my child over the years, is that there were times that he could do things and there were times he couldn’t.

Ms. Riggle: Yes!

Presv. Melanie: He could not express that because he’s non-verbal, so he couldn’t say, “I don’t feel well right now” or “I have a headache” or… Eventually the symptoms would come out, but before they did I wasn’t realizing why he couldn’t accomplish a task that he had done before repeatedly.

Ms. Riggle: For my youngest—my youngest child has chronic migraine and has had it from early childhood, but it wasn’t diagnosed until she was in high school. So you want to know about being able to do something one day and not being able to do it another day? [Laughter]

Presv. Melanie: Right.

Ms. Riggle: And her migraines are not just “a headache.” She has a complex form of migraine called vestibular migraine, and her migraine attacks include dyspraxia, so she becomes motor-impaired. She becomes speech-impaired. She has a form of migraine-induced aphasia, so teachers and parents, God forgive me, assumed that the things that… On a day when she could talk, she talked; on a day that she couldn’t talk, she might scream and growl, because there were no words. And that was being interpreted as very deranged behavior, especially at school. So she was doing absolutely the very best that she could, and when she finally got the diagnosis, there was a lot of pain and repentance for me in looking back and understanding how I had misunderstood, even with all of the tools that I had and the understanding I had from my other kids with disabilities. There was a lot of work for both of us to do, and we’re still… Like I said, sometimes you don’t ever get completely over these things.

Presv. Melanie: Right. Well, healing is a process. Once a priest told me maybe the misunderstandings I had about my child and the way I did not serve him lovingly, I need to repent of them and let them go, because that was then, and we must move forward in love and not hold guilt in ourselves as well. So I think that’s also important to remind ourselves as parents that, yes, we do feel sorry for what we didn’t know and for how we misunderstood behaviors, but it’s what we had available to us at the time, and the tools that we had in our own understanding—so to be gentle with ourselves, too, and not just our children. That’s harder for me! [Laughter] But I’m working on it. I’m working.

Ms. Riggle: But you know, the principle of philoxenia, applying it to yourself.

Presv. Melanie: Yes!

Ms. Riggle: That’s not something I’d thought about, so thank you!

Presv. Melanie: You’re welcome. So I want to go back to a couple things you said in describing even the giant cookie test. You had talked about a peer group, a parent peer group, and it brought into my mind that you had some level of support throughout your journey, and you and I have spoken in the past about isolation and how families do face isolation when there’s disabilities involved in our experience. So maybe we could talk a bit about how to help counter that isolation.

Ms. Riggle: Oh, absolutely! Yeah, having a child with a disability is so isolating, and if, like in our family, you have multiple kids with different disabilities, it’s isolating for so many reasons. I took all of my vacation days from work for years for medical appointments. There were no vacations. Going… hiring a babysitter when you have children with complex needs is almost impossible, so getting out with your spouse can be really hard. The judgment from other people makes you not even want to try. My kids… One of my kids for a year went to a school for kids with neurodevelopmental disorders, and it was… One of the fascinating things was there was an online conversation between the parents, and I learned that almost all of the families at the school used to go to church. There were only two families left—we were one of them—that still went to church, because going to church was too hard. They felt too judged, they felt in a place where they wanted support, they felt judged and shut out. So the parents at that school, like so many people with disabilities in their families, the easiest and most natural support group ends up becoming online. Online is something you can do at a time when you can do it. It’s asynchronous. If you’re having a crisis with your kid right now, you can talk about it with other people later when everything is calm.

I discovered a little group—it was a listserv, because it was back in the days before Facebook or… there wasn’t even really much of a World Wide Web yet; there was some, but online communities at that time were email listservs. And I found this little listserv where it was families with kids who were cognitively gifted but had disabilities at the same time. The group was formed to help parents, by a group of parents, who were trying to figure out how to get the kids the support they needed at school, because schools would tell them, “You can either get special education services for their disability, or you can get gifted programming if the school district offered gifted programming—but you can’t have both.” Or they wouldn’t believe you, so your child cannot possibly have a disability because they’re so smart, as if the two are mutually exclusive.

And it became, over time, an online family. I mean, we became so close to each other. We weren’t all going through exactly the same things, so it was a range of disabilities in the group, but the same themes were running through all of our lives. And that was where I found the support I needed to understand how to be a better parent for my kids. It was a place to vent to people who would get what you were talking about. It was a place to celebrate milestones that other people didn’t understand. For a child with a developmental disability that impacts their social awareness, learning to tell a fib, that’s something that normally happens when a child is very young—two years old, three years old, children learn how to fib—and that’s an important developmental step. You can’t go to church and say, “My child just told their first fib!” [Laughter] You can’t celebrate that! But in a group of parents of kids with special needs, you and everybody can have a happy dance, because that means that your child is now understanding that different people can have different ideas at the same time and that by changing my behavior I can change what you believe or what you think. It’s a complex developmental step, and it’s something to celebrate in some of our kids—but you have to be careful where you celebrate it.

Kids learn social smiling when they’re infants. One of my children came home from school one day in middle school and said, “Mom! Mom mom mom! This is so important! Did you know that when you smile at somebody, they will smile back?”

Presv. Melanie: Oh!

Ms. Riggle: And it was such a joy—and whom could I tell? So it was my online group that I could say, “My child has just understood social smiling.” This milestone—so we’re over a decade late on the milestone? But we’re there.

Presv. Melanie: And you can celebrate that joy with someone who understands.

Ms. Riggle: Yes, yes.

Presv. Melanie: Yes, I’ve found online support to be very instrumental in my survival, especially in the early years when we lived far away from extended family, where Michael’s needs were extremely intensive and we were much more isolated. I still find online support to be helpful and supportive and fortifying.

Ms. Riggle: Me, too!

Presv. Melanie: And I have a lot more resources at my disposal and a lot more people in my life at this time, but I’m not as isolated, but I still find it… Like you said, you know that there will be others who will celebrate with you, and also that you’re not alone in the struggles. Just knowing that someone else is dealing with their child being physically combative at times can get you through a very, very difficult experience.

Ms. Riggle: Yes.

Presv. Melanie: So I would highly encourage those who are feeling isolated to reach out, obviously to someone they trust, a friend, but also to look online for the type of support group that fits your needs at the time.

Let’s segue into how to make churches more welcoming so that families do go to church with, I believe, Christ’s intention of having us be embraced and welcomed and loved and finding rest in his love instead of a feeling of rejection and judgment. What might be some suggestions you would give communities?

Ms. Riggle: Wow. So, you know… I want to acknowledge first that it is difficult to welcome people who are different. Humans… We seem to be programmed—made, created in a way—where it’s easy to love and support the people who are like us, and people who are different are harder. This is a journey I’ve been on since I was in that little Lutheran church all those years ago. Understanding that people who are different are to be welcomed and valued just the way they are, not just that you let them in—your church, maybe you’ll let anybody come in the door, but if a teenage girl shows up in a dress that shows too much skin, or a boy slouches and slumps and won’t look you in the eye, or kids who won’t stop moving and talking, a man with a service dog…

If you can treat the people who come in the door of your church as if they were angels, even if they don’t look like angels… Because that’s what St. Paul told us; he said that when we welcome strangers… And the Greek word there is philoxenia, and it doesn’t just mean people we haven’t met yet; it means that we welcome people who aren’t like us: strangers, foreigners, people who are uncomfortable to be around, even maybe that you’re a little threatened by their presence because you don’t know what to expect. When we welcome them, we might find out that we’ve been welcoming angels. And I think that’s the goal for a church community: to genuinely welcome everyone, to remember that the Church isn’t just for people like us. And I think that that’s when a church really will grow both in numbers and in virtue and in holiness, because the struggle for philoxenia is a struggle for holiness. And the church will grow in numbers, because people know where they’re welcome, and people don’t go where they’re not welcome. So it’s a church growth strategy in so many ways.

But the question is: How do you work towards that? And I think one of the ways to start is by looking around to see who isn’t there. You could kind of take an inventory of your parish and see who’s been left out, and the ones that are left out, the ones that aren’t there, are typically going to be people who don’t feel welcome. And unless your church is really unusual, one of the groups that won’t feel welcome is people with disabilities. And that’s a hard saying, and I know it’s uncomfortable to hear, but if you look and see, about a quarter of adults have a disability. The older you get, the higher that number becomes, but about one in four adults is disabled. About one in 25 have a life-threatening allergy; about one in 15 have a mobility issue; about one in 10 has diabetes; about one in six have a developmental disability, which might be cerebral palsy or autism or other kind of developmental disorder.

Count heads at your parish. If you have 200 people, there should be about eight people with life-threatening allergies on the average—are they there? If they’re not there, maybe they’re not there because attending your parish would threaten their life. I mean, literally threaten their life. Out of that parish of about 200, one in 15—how many walkers and crutches and wheelchairs are there? If you don’t see any, you could look at your building and see if they can get in the door, or if there’s a toilet that they can use. Because sometimes making them welcome means doing things differently. For the people with diabetes, when you have a parish meal or a coffee hour, is there food there that they can eat? There are all these things: the barriers to entry for people with disabilities can be really, really significant.

My hypothesis is that once you learn how to welcome people with disabilities, it becomes easier to welcome everyone, because disability is universal, and when you start welcoming disabled people… I mean, genuinely making a place for them at the table… You said earlier that families that deal with disabilities are less judgmental than others, and I think that becomes true, and I think it becomes true of parishes, too, that as people with disabilities are welcomed, we begin to understand that behavior is communication and that children and all people do well when they can, and that we… making room for each other sometimes takes a bit of effort, but it’s so worth it.

Presv. Melanie: Beautifully said!

Ms. Riggle: Thank you. I think that’s where we start, is just by seeing who’s missing and find a way to make space for them.

Presv. Melanie: Right. Who’s missing—that person belongs to Christ. And as such, we offer the honor and respect due them as a child of God.

Ms. Riggle: One of the things about the Orthodox liturgy that when I was newly Orthodox—it’s something that still really resonates with me—is that when the priest censes the icons and then censes the people, that again is the very physical, very incarnational statement of who the people there are. They’re all—every single one of us is an icon of God and deserves the reverence and gentleness with which we treat an icon, and actually more, because we’re living icons. That was one of the pieces in my early years as an Orthodox Christian, when I understood that, I think it was another zap, maybe part of the same zap, because that journey to not-judge, there’s so many pieces of it. And the physical statement at every liturgy in the church, that every single person there is an icon is just breath-taking.

Presv. Melanie: Charlie, it’s been a joy to speak with you today. You have so many more insights on your blog. How can people find more of your resources?

Ms. Riggle: Well, so I do have a blog. I blog at charlotteriggle.com. You can find saints’ stories or picture book reviews, because I review picture books that include disability representation. It’s just my name: CharlotteRiggle.com. You can find my books on Amazon.

Presv. Melanie: Thank you, Charlie. I’ve really enjoyed our conversation. God bless your family.

Ms. Riggle: Thank you so much.