Transcript

Presvytera Melanie DiStefano: Welcome to Family Matters: Fully Human Edition. My name is Melanie DiStefano, and today we are joined by Wendy Cwiklinski. Wendy is mom of five: four daughters and one son, aged 35 through 24. She has one beautiful grandson, Kenby Alexander, who just turned one. Her husband is an Orthodox priest who served as a Navy chaplain, retiring in 2014 with 40 years of total service. She has a master’s degree in religious education from Fordham University, which she acquired in 2015, a 30-year graduate school journey. Welcome, Wendy. It’s good to have you.

Matushka Wendy Cwiklinski: It’s great to be here. Thanks for having me on.

Presv. Melanie: What inspired you to become involved in offering support to families with disabilities?

Mka. Wendy: Well, I think it was our own journey. Out of my five children, all of them ended up with some sort of diagnosis: autism, bipolar disorder, oppositional defiant disorder, ADHD, anxiety disorder, learning disabilities. You name it, we probably were there. [Laughter] It was a complicated journey, because when my children first started being diagnosed with these issues, it was in a period of time when these things were just starting to happen, and treatments and even diagnoses were difficult to obtain.

Presv. Melanie: Did the children age before you were actually able to identify some of the things they were experiencing?

Mka. Wendy: They were about between 10 and 12, and for children on the autism spectrum, some of their issues could have been addressed. Now they address them early, in early childhood, if things are identified, but yeah… Because we weren’t able to identify them until they were teens, it was difficult to really address the issues that they needed to have addressed.

Presv. Melanie: Absolutely. Obviously, it’s not impossible, but it just takes a lot more effort, and when you don’t have the resources sooner than later.

Mka. Wendy: Right.

Presv. Melanie: So over the years, how has disability ministry evolved in the Church?

Mka. Wendy: Well, our own family’s journey started in 1999, when the book, The Bipolar Child, was published. I saw that book and I said, “Those boxes could be ticked for some of my children.” We actually moved a couple of times in those years. This journey started out when we were stationed in Alaska, and then we came to Rhode Island for a year, and then we moved to California. So things didn’t really get settled, and we were moving from professional to professional, searching for the right answers and good treatment.

But we moved to Iraq, and in 2006 I got a call from a department of ministries in the OCA, and I was asked to write an article about ministering to Orthodox families that were in the military. So I thought, “Well, that’s a great article to write, but my family’s in the midst of this journey. I think this is even more important.” So the article that I wrote, “The Church and the Child with Invisible Disabilities,” that was published on the OCA website actually came then, probably should be revised, because a lot of those links are no longer viable there. But as far as I know, that’s the first thing that was published in the Orthodox sphere about children with invisible disabilities like autism or mental issues, bipolar disorder, those sorts of things.

And my husband and I had to really debate about publishing this. First of all, we’re a clergy family, and clergy families are in a much different place in our Church. Sometimes the expectation is that we are perfect, and by disclosing this we would tell the world that we were imperfect. But telling the world, I mean not just as a clergy family, but just as a family, that our children had these diagnoses that were in society at that time very stigmatizing—and still are to some degree today, but the acceptance has become much, much better as we’ve recognized that these are real things and not just manifestation of bad behavior, that it’s a real function of a child’s brain, not just willing manifestation of what we consider bad.

But that article… I got such a response from that. I would meet people at different functions, and they said, “You know, I really enjoyed that, and I’m glad that you did that, because it made us know that we weren’t alone.” After that, I did a ministries conference for the OCA; I did a presentation there. After that presentation, the room was really still. I was vulnerable. I laid it out there, what my children’s behaviors really entailed. There were bishops there, there were priests there, there were all sorts of parish ministry people there. They said, “We’ve never heard that inside story about how these things work in someone’s house and how it works within a family that has these issues.” That article actually has been translated many times and published in so many places. It just points to the need for us as a Church to acknowledge that these issues are in our midst and to work to address them.

It’s actually gotten so much better, so much better. In those 15 years since I’ve published that article, our surrounding society has become more accepting and accommodating of people with autism and other invisible disabilities. I maintain that, in comparison to other Christian faith groups, the Orthodox Church actually is one of the most accommodating. I’ve been to conferences regarding disability for other faith groups, and we are one Church, we have one community. Priests are only allowed to serve one Liturgy on Sundays, so we have one service. I should clarify that: for the most part, our churches have only one Liturgy on Sundays. Sometimes there’s an ethnic service and an English service.

We commune. We accept our children as full members of the Orthodox faith. From the time they’re baptized, they’re confirmed or chrismated at baptism. They commune from the time they’re baptized, so they’re able to fully participate in the sacramental life of the Church, which is not done throughout some other parts of the Christian faith groups.

Presv. Melanie: Right. My husband actually talks about that, receiving holy Communion at any stage of life, is like the great equalizer for all human beings. Maybe some people don’t know this, but in the Orthodox tradition, a child doesn’t have to be cognizant and say, “I believe in the Holy Trinity,” in order to be baptized. The sponsor speaks on their behalf. And so our children are often infants when they come into the faith and receive the full communion, receive the Body and Blood of Christ in holy Communion from the time that they’re able to as infants. We don’t emphasize that intellectual capacity. In the same way, toward the end of life, when people are experiencing dementia, that does not mean that they have to refrain from receiving holy Communion. Everyone is welcome at the table.

Mka. Wendy: Right. That really distinguishes us, I think. Often at these conferences, I would be sitting there thinking, “Well, why don’t they know about us?” [Laughter] We’re a great example of what it is to be inclusive. I think that some people will point to ways that we’re not inclusive, and certainly we have those; it’s not perfect. But of all the faith groups, I think that we have that within our theology; we have it within our practice. And can we be an example for the rest of the Christian world?

Yeah, I think there’s a real disadvantage when we compartmentalize theology. I mean, I attend the conferences, but I just think that by separating the theologies and compartmentalizing them, we also divide the Church; we make it a divisive thing, like us against them and neurotypicals versus those who are not neurotypical. We’re all one body of Christ! And by compartmentalizing, we say, “Oh, this part is different.” Well, we’re all one body. We want to unite it. We’re all human, we’re all perfect beings in our own way, but we have the assurance that, in our humanity, we’re made in the image and likeness of God and that our humanity is shared with the Son of God, who embraced humanity with all its vulnerabilities.

Presv. Melanie: Amen. So maybe you could talk a little bit more about that paper that you referenced, “The Church and the Child with Invisible Disabilities.” What are some of the difficulties that come with invisible disabilities?

Mka. Wendy: Well, you know, we often see disability as defined by some sort of physical manifestation. Think about it, what is— When you have an “accessible” bathroom or you’re looking for an “accessible” room—I’ll use air quotes for that word, “accessible”—what’s the symbol? The symbol is a wheelchair. Most of the time we see disability defined in a physical sort of way, and even there was a statement that came out from the Assembly of Bishops in 2009. It’s an important statement, but even in that statement it tends to focus more on people with physical disabilities. And physical disabilities you most often see. If someone has a heart condition—there are things that are invisible—but when I talk about invisible disabilities, I mean mainly autism… disabilities that manifest themselves in a behavioral way and that which leads to a lot of judgment.

Early on, my parenting skills were questioned not only by those in church but also by medical professionals. “Well, what are you doing wrong, Mom?” or “You just need a chore chart” or “You just need to chart their behavior and have them get rewards for good behavior.” And that was not the solution. The solution was to find out what exactly was going on in their brains and figure out the right way to cope with it and to make it work so that my children could be among their peers and among society without such judgment. I’ve even had people tell me that my children were demon-possessed and needed to have exorcism, which, I mean— Would we ever say that with an older person who had dementia? “Oh, you need a— You’re demon-possessed.” It’s just… As science has evolved, so has our society’s acceptance and knowledge that these things are real and not just “bad parenting.”

Presv. Melanie: It’s hard, I think, sometimes when we don’t understand something. It’s so unsettling to us as human beings that we just want to find a reason for it, and so we make up our own. [Laughter] I’m guilty of it as well. That is why, especially with behaviors, we can jump to some conclusions. But now that we know more about what happens when we have a brain disorder, just even being able to see brain activity through different testing, brain scans, it makes it clearer to us that this is something physiological, whereas before we might make assumptions about what was happening.

Mka. Wendy: Right. But for older people, that’s hard, like older parishioners who say, “Oh, when my kids were this way, I wouldn’t allow such and such to happen.” We’re in a small chapel community right now, and we have some—one family in particular that has some profoundly disabled children. And the beauty of our small chapel community is that they can be who they are. And you see their deep, deep spiritual— Oh! They’re just closer to God, because they don’t have those brick walls that get in the way. They don’t have the… oh, I don’t know how to explain it. It just is. And their ability to be so innocent and not let all the stupid stuff of the world come between them and their relationship to God is just— Oh my gosh.

Presv. Melanie: It is. It’s such a gift.

Mka. Wendy: It is! It’s a gift to us. And I see these things as a gift. People say, “Well, you know, your children— How can you have done that? How can you have survived having all of these things in your family?” But if you see it as a negative then, yeah, you’re going to get dragged down. But if you see it as a gift— And it really was a gift, because it informed our ministry. It has touched so many other families that have children with these challenges and gifts, that it’s just who we should be. We’re all part of that body of Christ, and we should all uplift each other.

Presv. Melanie: You said there are— Sometimes older parishioners have more of a struggle because, in their minds, it’s a very black-and-white issue, “I would have handled this behavior a certain way.” How did you handle that over the years? Did you find ways to handle it that you felt were successful in your dealings with people who misunderstood? Maybe that could be helpful for other families who are being approached in similar ways.

Mka. Wendy: Well, I learned that just kind of being up-front about what was going on with the kids was important. Sometimes people would understand, and sometimes people wouldn’t. I can change how I react to them. There’s that sort of therapy statement. I can change how I react; I can’t change how they react. But I can inform them. Whether or not they choose to listen to that information and take it into account is out of my hands. Sometimes there was a lot of prayer for some other people! [Laughter]

Presv. Melanie: Right.

Mka. Wendy: “Dear God, enlighten them so that we can be together in community.”

Presv. Melanie: Right, to have a peace amongst each other.

Mka. Wendy: Right.

Presv. Melanie: I am curious. You can share however much you feel comfortable sharing, but was there ever a turning-point? Did you always see things as a gift, or was there a time when you struggled with these issues that you faced as a family?

Mka. Wendy: Oh, man, there were always times… There were always struggles and then life would straighten out a little bit, and then there was another struggle. Now that my kids are adults, the struggles are much different. They’re not in the home, but there are other families who have their adult children still living with them. It comes and it goes, but I found that, among all of my peers, having faith and being a part of a church was an important resource for me. At some points, I really had to learn how to give it to God, to just say, “You know, God, this is above my pay-grade, and it’s yours to help me out with.” We had kids that went to residential treatment. There were frequent hospitalizations. The police were often at our house to help when things got out of hand. You know, it is what it is. Looking back on it, I wish it were different, but then I don’t, because it all informed— It all informed the paper I wrote, certainly. My initial paper was about catechism and bringing kids into the Church. Then, over the years, I had finished all of my credits and I didn’t write my paper, so I called Fordham, and I said, “Can I finish?” And it just was clear to me that this was the paper I needed to write. So my paper, which is online, is not academic, but it’s meant to be an easily accessible paper for people to read regarding this issue.

Presv. Melanie: So it sounds like being able to find meaning in the experiences, being able to use it for the good of others going through similar experiences, helped you to see the gift in the experiences.

Mka. Wendy: Right.

Presv. Melanie: Which resonates with me as well. The more I share about our life in ways that I pray will help inform and help other families, not just families who have disabilities but others as well, the more I am open to how much this really is a gift. It doesn’t mean it’s not hard. Like you said, there were struggles, there were challenges, very difficult situations, but that’s the paradox of our faith: is that the cross leads to the joy of the resurrection.

Mka. Wendy: You know, there’s a great quote. [Laughter] You mentioned the cross. I used this quote in my— I use it a lot. Dn. Dr. John Chryssavgis wrote a book called Soul Mending, and in that book he says, regarding individuals with disabilities—and he as a son that had some sort of chronic condition—but this is the quote:

It is in them that we discover models of spirituality and ways of salvation. They can show us what true humanity is in this world, far from perfect, and yet fully and totally loved by God. The reality of disability, like the Cross itself, must serve as a critique of our illusions and ambitions.

Presv. Melanie: That’s a powerful quote to unpack. “The critique of our illusions”: I can see that in my life with my child. It has been such a mirror holding up what my misunderstanding of life and humanity may have been at different times. Thank you.

Mka. Wendy: Well, as parents we have to allow ourselves to grieve as well, to grieve those dreams and those expectations that we have. When you’re expecting, this child is coming: What’s going to happen? Will they be like me? Will they be like grandma? Will they go to college? All of those expectations and all of those dreams that we have for our children. And sometimes those dreams are shattered. How do we deal with that grief? It’s not like a physical death, but there is the death of those dreams, and how do we deal with it? But then do we say, “Well, we need to just readjust. We need to redo our expectations,” and move from there?

Presv. Melanie: Yes. So you have launched a support group to help families who are going through similar experiences with disability and to address some of the questions we’ve been talking about. Can you tell us about the Facebook group?

Mka. Wendy: Well, when I was finishing my thesis at Fordham, I was putting together a resource page, a list of resources. I realized that I had been participating in peer resources for years. I’m still friends with many of the people that I began this journey with—online: some of us have never met in person, but our friendships are deep and abiding. We’ve journeyed together. We’ve bared our souls with each other. We’ve held each other up in times—when one is down, we’re all there to try to support them. The journey has continued even as our children are adults.

But I realized there was no Orthodox resource for this, so I went to Facebook, and in 15 minutes I had the Koinonia group formed. Since then, we have over 500 members. It’s a closed group for privacy reasons, because this way people can share sensitive issues and discuss sensitive issues in a place that isn’t public and everybody can’t see. So you can’t see my posts in that group on Facebook because it’s closed and private. So if you do come, we have a place-holder page, but you have to answer three questions to get into the group—“Are you Orthodox? Do you have a family member with special needs?” and I forget what the other one is—just to assure that we are a group of people that all belong together there.

It’s been amazing to see some issues raised, and it’s people who have children and family members that have all sorts of special needs issues. We run the gamut: it’s not just autism and children with mental health issues. We have children with chronic health issues. And it’s a place for parents to come and connect with other Orthodox parents that may have— may be on that journey, maybe on that same health journey. And others may have found solutions that would be helpful.

Presv. Melanie: I’m just going to say the name of it again for people to look it up on Facebook. It’s called “Koinonia for Exceptional Orthodox Families.” I must say, when my son was diagnosed with autism at age three-and-a-half, and he had already had a lot of medical issues, Down syndrome and other medical issues, at that point I was really looking for support, and I wanted to know what my faith said about these things. I wanted to find like-minded people to go through this journey together with. And at that point, it didn’t exist. So it’s really an amazing work that you did, to create this forum for people to be able to connect and just find resources or just to say, “Look, I’m struggling here. I need prayers,” and to know that there will be people praying.

Mka. Wendy: It’s a community. Sometimes we disagree, like every other community has disagreements, but I’m happy to see people connecting.

Presv. Melanie: So maybe in closing you can offer just some suggestions for church communities. How can we as communities, as parishes, be more accommodating to families with disabilities rather than adding to challenges that families have?

Mka. Wendy: Well, we have to make an effort to be inclusive. That word is— Ha, it’s become such a tinged word lately. But to be intentional about including them in the church community. I mean, they’re included in sacraments, but can they go to church camp? I’ve heard from several parents about their kids not being able to do that. For me as a teen or even as a young adult, working in a church camp was so transformative an experience. So I actually took my kids to the camp where I worked, and it was a little long for one of my kids—it was two weeks. But I went into it.

The director assured me, oh, her counselor has this training for autistic kids, etc., etc. I stayed close by for those two weeks, just in case it wasn’t good and I needed to come pick up one of them especially. They never called me, so I get to the camp to pick them up, and the counselor says, “You know, maybe camp wasn’t really for your child.” That was kind of a bummer, but—and this always gets to me—my child— I came to— I came the night before, and they were all out on the field, and she came up to me running, and she was super excited! And she said, “Mom! Mom! Mom! Come and meet my friends!”

You know, for neurotypical kids, having friends is just sort of a given, but sometimes when your kids have social challenges, having friends is just such a gift. Such a gift. Here we go. The counselor said maybe she shouldn’t be here, but then she: “Come and meet my friends, Mom.” Things that people who have not walked in this journey seem to take for granted sometimes are the biggest gifts we can give to these kids and their families. The recognition when you call them by their name, to actually be there and be present with a child, even if you don’t think your presence is making a difference.

The other thing is that this family that we have in our midst, their son is the age of an altar boy, but staying in the altar is just not possible at this point. So what do we do? We have him stand with the candle at the entrances. We adults move him into the right place. And he’s learned his place; he’s learned where to go. And he stands there, and he’s very proud of the fact that he has this participation in the service.

Can we make that happen? Each individual, each family—there’s no cookie-cutter approach; each situation is different. How can we make it work? Not to say, “We can’t do this,” but “What can we do?”

Presv. Melanie: I like that. I like how you framed it as well, as not being cookie-cutter. It really goes back to seeing every individual as uniquely gifted, and what are those gifts and how are we becoming more alive together, using those gifts in the body of Christ? So thank you for that, and thank you for sharing about your daughter. That was a beautiful story.

Mka. Wendy: That’s all we have.

Presv. Melanie: It was great to be with you today. Thank you, Wendy.