Presvytera Melanie DiStefano: Welcome to Family Matters: Fully Human Edition. My name is Presvytera Melanie DiStefano, and I work for the Center for Family Care. Today we are joined by Natalie Kapeluck Nixon.

Natalie is the director of the Youth and Young Adult Ministry for the Ukrainian Orthodox Church of the USA. Prior to her work for the Church, she was a professional dancer. Natalie has a varied background in working with individuals with special needs. She taught movement and dance for the Western PA School for the Deaf, the Western PA School for the Blind, rehabilitative dance for stroke victims and for Move for Life, which works for elderly with physical limitations. Within the work of the Church, her office developed a college student mission trip to work with special needs orphans in Ukraine as well as the St. Nicholas Special Needs Parish Ministry Initiative. Natalie has been married to her husband, Ethan, for 17 years, and they have a very energetic 14-year-old, Theo, who just so happens to live with Down Syndrome. Welcome, Natalie.

Ms. Natalie Kapeluck Nixon: Hi, Presyvtera! Christ is risen!

Presv. Melanie: Indeed he is risen! So tell us about how the St. Nicholas Family Camp started. What gave you the idea for the camp, specifically a camp to minister to families with disabilities?

Ms. Nixon: So the camping ministry sort of falls under the umbrella of my office. Within my time working with our camping ministry, we would often have requests for campers to join us who have special needs, and we would always work with those families individually to try to make that happen, but we would find within the course of doing camping ministry that often families would send us campers and sometimes not give us all the information we needed to know about their child. We would find out as they were at camp that they might have some special needs. Sometimes when you’re working with that, to have it kind of come up on the fly is a little more difficult. So that kind of got us thinking about maybe we need to offer programs specifically for families that have children that might not be able to come to the typical camp.

So that started the discussion, and we did a lot of research. We did about two years of research to see what kind of camp we wanted to do and what we could provide. I think that’s a big thing when you’re doing camping ministry is being very honest about what you are able to provide and handle well for the families and the campers that are coming to you. We wanted to make sure that we offered a program that we could do well and really provide well for the families.

So instead of just doing a sleepover camp for campers with special needs, we had found a program called Johnny and Friends, which is actually through the Roman Catholic Church. We really liked their approach and that the camping ministry was for the family. As you know, we both know, that families who have loved ones that live with special needs also need ministry in a different way, so we kind of liked their approach, and we made St. Nicholas Program a family camp. That’s sort of how it kind of evolved to what it became. We also opened it up that campers can be of any age, so it’s not just for children. It’s really a family camp, to have family members that have [special needs].

Presv. Melanie: I think that’s so important, like you said. All camp ministry can really have a greater impact if it were offered more for the full family, and especially for those of us who have a loved one with a disability in our families. Sometimes just even the caregiving is intense, so being able to be present with your child or whoever it is who has the disability, you can continue to offer what that person needs and be able to participate in the camp. That’s a wonderful approach. How long have you been offering the St. Nicholas Camp?

Ms. Nixon: About five years now. It’s been about five years, and when we were trying to figure out how to put together the program itself—and you were just saying it’s important for camping ministry to minister to the whole family—we have a very successful Mommy and Me, Daddy and Me camping program. The more we looked at how we could make it work, it really mirrored actually that program. So we kind of took what was working at our Mommy and Me program, which is for kids 4-8 and their families, and kind of just tweaked it and adapted it for the St. Nicholas program. There are various factors as to why we felt that that mirror kind of worked. So, yeah, we took basically one type of family camp and just adjusted it for St. Nick Program.

Presv. Melanie: Okay, so you talked about knowing your own limitations and what you can provide well for families. That kind of leads me to ask: What types of disabilities is the camp able to accommodate? Is it wheelchair-friendly, for instance? Is it difficult for people to navigate through the camp experience with physical disabilities? How have you been able to make some accommodations?

Ms. Nixon: It’s kind of like many things with any camp administration. We try to make it on a per-camper basis. Some of our facility is set up for individuals that have physical limitation, so we do have facilities that have ramps. We have bathroom facilities that are to code for those who have wheelchair needs. But it is camp, so it is a rougher terrain, but we also have golf carts! [Laughter] So if somebody needs to get picked up and driven somewhere, that’s part of what we do. We try to have really good conversations with families and potential campers about what our property is like, what our facility is like, and then really seeing: Can we make it work for them? We’ll go out of our way to make the program work for everybody, and so far we have not had to turn anybody away.

We also have… If campers want to stay in a cabin, we have detached wash houses, so if they are able to have a camping experience like that, that’s fine, but we also have our Millennium Cultural Center that houses 40 indoors with indoor bathroom facilities, so we can also accommodate campers that way, so that if they need to have something that’s on the same floor with the bathroom right there, we can give them that accommodation, but we can also give them a more sort of rustic camp experience, where they’re in a cabin and they would use a wash house and that sort of thing. We’re kind of blessed that we can give a lot of options for our campers.

Presv. Melanie: That’s wonderful. Describe maybe a typical daily schedule for the camp. What can parents and children expect to experience?

Ms. Nixon: Sure. We try to keep the schedule loose—I shouldn’t say “loose,” but we have broad time-frames, knowing that sometimes our campers, whether it be as far as being able to adapt to a new schedule, or physically having to move from one place to another… Having too tight of a schedule is going to maybe be a little difficult. We get up, we have breakfast, we will normally take our time down to do our morning prayers together, and then after that we will normally break up and have time for family members to have their sort of maybe workshops or speakers.

And we have our campers then come with the staff, and we kind of have what we have our activity time, our mixed activity time. Part of the time might be having some sort of religious education or talk, depending on their age, and we’ll break them up by ages. Then also during that time they might work on a craft; they might have just some down time. It’s like a two-hour block. During that two-hour block, we break it up for the campers into various activities so that they can keep moving and not have to sit that one thing for too long, whereas the family members, whether it’s parents or siblings, we do bring in speakers, and they have workshops of their own during that time.

Then we have a break where everybody can get some break time that they need. We go to lunch, and then the afternoon is again a little more family time. If they want to go on a hike, if they want to go swimming: it’s up to them as to what they want to do; we give them that sort of family time. Also normally in the afternoon, we might have an hour family activity, so we do what we sometimes call a family hike, a prayer hike, but we have a trail that’s very easy to manage, even if someone had some difficulty with walking or in a wheelchair, they could go on this “hike.” Then we would ease our way into dinner, and then we would have an evening family activity. Then we’d have our evening fun activity. So it’s kind of a broad schedule that we work within.

We also realized that sometimes campers might need a break, so we have a sensory room set up that was generously donated by several donors. So if someone needs a break and they want to just go hang out in the sensory room, they can. So that’s what a general day would look like with us.

Presv. Melanie: Okay. Just a couple questions that come to mind, just thinking about my own child and his needs. When you break out and you have parents or siblings having their own kind of break-out groups, their own sessions, with a speaker or an activity, then then child or family member with a disability is being ministered to, how is that? Is that a one-on-one situation with staff, or how many…? What’s the ratio there?

Ms. Nixon: This is something we took from our Mommy and Me, Daddy and Me program. As that program developed… It’s hard to be away from home with small children, and we would find that a lot of our families had, like, four-year-olds, and maybe they’d bring an infant with them, because they couldn’t leave them at home. It would be a little stressful for them, so we started what we called a Big Brother, Big Sister program, and every family was assigned a big brother or a big sister who was with them almost an entire day. So we adapted that for the St. Nicholas program, and we call them guardian angels. So every family has a guardian angel, and they basically stay with that family as much or as little as they need all day. So when we have those break-out sections, the camper has their guardian angel with them.

We do training with the staff. We pair the guardian angel with the camper in particular, knowing what that camper’s needs are. Our director for the program—her name is Tracy Galla—she worked as a paraprofessional for 16 years, so she really has that knowledge of how to train people in kind of being that aide to someone in their day. So she does the training with our staff. We have additional training as well, kind of talk to them ahead of time about what the needs of their camper might be, so the campers do have someone with them throughout the day.

Presv. Melanie: That’s really brilliant. I can imagine that not only do the families benefit, but the guardian angel grows spiritually within that walk through that week with that family, getting to know and see the beautiful gifts of that family. That’s probably such a mutual growth that’s happening there, that’s native.

Ms. Nixon: Oh, yeah. And what’s nice, with our Mommy and Me program, we mostly have teenagers and young adults as the big brothers, big sisters, but with the guardian angel program, we actually look for people of all ages who want to come and have that experience and give back. So we have some guardian angels who are in their 30s, 40s, 50s, which is good, because we have campers who are in their 30s, 40s, and 50s.

Presv. Melanie: Awesome.

Ms. Nixon: So trying to pair people with the right guardian angel. It’s a really nice experience, and they really do become part of the family, and that’s kind of what we tell them. It’s not just a title, being a big brother or a big sister or a guardian angel; we want you to become part of their family.

Presv. Melanie: So beautiful! And what a model of inclusivity. I really love that all ages are included, because that’s what our families are made of. So that’s wonderful.

The other question is… I’m assuming, if families are having a hard time meeting all of the scheduled offerings, that they have the opportunity to sit it out if one of the family members is having a hard time, that kind of thing.

Ms. Nixon: Yep. We talk to families about that at orientation. It’s not like regular summer camp, where you are required to go to everything: you come, you have to be part of the schedule. Here, this is the schedule, and you come to what you can make it to. If you need more down time, you need more down time. Just let us know, and we’ll see you two hours from now. It’s what’s really kind of nice about the program; it has that flexibility.

Presv. Melanie: Wonderful. So how can families find out more? Where can they go? On what website can they go to check it out?

Ms. Nixon: Our website is www.uocyouth.org. You just want to go to the UOC Camping Ministry. You’ll see it up there, and St. Nicholas program will kind of fall in there with the rest of our programs. As I had mentioned, I just want to quickly say, we do also try to integrate youth with special needs into our typical programs as well. We encourage families to have that discussion with us, if they would also like to be part of the other programs.

Presv. Melanie: Excellent, right. Every child, every person, is in a different space and has different challenges, so there are definitely situations where it would be beneficial for the participation in the regular programs.

Ms. Nixon: Yeah, and we have a little bit of everything. We have people who participate in everything, and we just try to work with the families.

Presv. Melanie: Okay, so let’s get a little bit personal. We heard a lot about the camp program, but you do have a personal experience of disability in your family. Can you share a little bit about Theo, your son’s, diagnosis, and the walk that you and your husband, Ethan, have had with you?

Ms. Nixon: So, as was in my bio, Theo is an extremely energetic almost-14-year-old who just happens to live with Down Syndrome. You know, Presvytera, I don’t know how you view it as a parent, but I’ve always looked at it that we’re like any other parent. All parents have struggles; we just have different struggles, and there are things that other parents are going to struggle with their kids that we’re never going to struggle with with Theo. We just have different struggles. I just think that, for us, it’s a really important way to look at it, and I think it also helps to take away the stigma sometimes that there is about that someone has special needs. I’m like, well, sometimes that parent has also a special need, because their child is dealing with a drug addiction. We all have different things we’re struggling with; ours just happens to be that our son has a diagnosis of Down Syndrome.

So our walk was interesting, and I don’t know if I’ve ever really talked about this publicly, but I think one of the hardest things we started out was the reaction when we thought he might have Down Syndrome, which we did find out with ultrasound, and sort of the reaction of the medical attendants that we had and the doctors, the ultrasound operator. You’re kind of met almost automatically with sympathy and pity that your child might have Down Syndrome. I think that’s a tough thing for a parent from the very beginning, because you’re pregnant and you’re full of joy that God’s given you this child, and then you’re met with “I’m so sorry.” That was literally said to us when they saw markers for Down Syndrome. They weren’t even sure that he had it or not. What was said was, “I’m so sorry.” That’s what was said.

So it really sets you up mentally, not in a good place, when it should still be joyful, nothing but joyful. That’s something I want to see, moving forward, not just in society, but also in our Orthodox community, and I love that you’re doing this with these podcasts and everything that you’re doing with “Fully Human,” because… to give our Orthodox families that support they need that we’re not getting from the outside world.

Presv. Melanie: Amen. Yeah, I agree. I think we can, because certain disabilities or certain special needs are more obvious to our eyes or to our walk in life, we can categorize them as such, but, like you said, every person has challenges. Every parent has challenges; every child has challenges. That’s a healthy way to rise to the occasion of what those challenges are, and also to count the blessings, because there are so many blessings that come from it. So I guess maybe related to that, what are some of the blessings that Theo and your family have experienced, being so involved in camp programs, church camp programs?

Ms. Nixon: He’s a character. [Laughter] He definitely has a personality that brings people joy, but as I’m sure you know, one of the things that you work with the kids who have Down Syndrome is that many of them do have behaviors that you have to work with and through and help them to learn to manage. As much as that is one of the biggest challenges, I think that we faced in our journey with Theo is working with his behaviors and helping him to learn to manage them.

It’s also been a blessing in so many ways, because God has always sort of brought to us individuals to our parish that have worked with us as nannies and babysitters, that’s just this wonderful—I almost want to say a parade of young people that, as one would graduate and go to college or graduate from college and couldn’t help us any more, God would bring us yet another young person from our parish or parish community. Having these young people helped Theo with his behaviors, but also seeing them grow themselves, through having this relationship with him. Two of them have gone on to work in education, and one of them has also moved into special ed, and she will say it’s because of her walk with Theo. So that’s been one huge blessing for us that’s come out of it.

Presv. Melanie: Absolutely, and it does take a village to raise a child, as they say. But it’s a mutual benefit, like you said. The person who helps is also being helped.

Ms. Nixon: Yeah, all of these young people that have come through our life, they’re still part of our family, which has been a blessing to us, because he’s our only one. There are additional kids for us now, too.

Presv. Melanie: That’s beautiful. You grew your family. Really sweet. So I’m just curious. In your bio, you listed many ways in which you used your passion for dance, your talent for dance, to minister to those with disabilities. Was this something you did prior to Theo or after Theo?

Ms. Nixon: Oh, yeah! It is definitely interesting how God prepares you for things in your life. [Laughter] No, I danced with a professional modern company, and we actually had—my director, her education was not in dance. I mean, she was just a professional dancer by her training, but she also got a degree in psychomotor therapy, so she really believed that dance and movement should be for everyone. So she sought out opportunities for the company to do that type of work, so it was through my company when I was dancing that we had residencies at the Western Pennsylvania School for the Deaf. And then later on, after I had retired from dancing, she came back and asked if I would work with her, and that’s when I started with the Western Pennsylvania School for the Blind.

When we were at the School for the Deaf, normally you’re placed in either of those schools when your primary diagnosis is deafness or blindness, but that doesn’t mean that you don’t have additional diagnoses. At both places I ended up working with kids with multiple diagnoses, and between both locations, I probably worked in that area for probably at least 15 years, and also that stemmed the work with stroke victims. Again, my boss came back to me when she started the Move for Life program to work with the elderly that had physical movement issues, and I worked with her again for another five years doing that. So it was all prior to Theo. [Laughter] Except for the Move for Life. Move for Life has been more recent, but everything else came before Theo. The orphanage project in Ukraine was before Theo. I really feel that God brought all of that into my life in a way to prepare me for my son.

Presv. Melanie: And it also strikes me that your heart was already open to people who had disabilities, and God knew your heart and knew that you would be a good mom for Theo. I don’t think there are any accidents in life. That’s my own view, anyway.

Ms. Nixon: No, no, he definitely prepared me for him. It was such a help to already know some sign language when Theo was little. I don’t know if you use sign language with Michael, but we signed with him, because he didn’t talk right away; it was a while before Theo started talking, and sign language was really important to us in his early years. It was helpful that I already knew it—I shouldn’t say I already knew it; I knew enough for an infant! [Laughter]

Presv. Melanie: All right, we’re running out of time, so I’m just going to ask you maybe as we part, give any final thoughts or words of encouragement to families who are walking a walk with disability. Maybe just some food for thought for them.

Ms. Nixon: It’s a tough one, because we all have such different walks. I think to just keep trying, especially within the Church and within the faith. It is hard. It is hard when you want to bring your child to church, but sometimes it’s just easier to stay home because of the things you have to work on and deal with. You don’t want to bother your parish family, maybe, but, as you were saying many times, the gift goes both ways. I think the more we bring our kids into the life of the parish the better it is for them and for the life of the Church. So I know it’s hard, but just keep trying. Just keep trying, and ask for help. Don’t be afraid to ask for help from your parish family.

Presv. Melanie: Amen. Thank you, Natalie. It’s been a pleasure talking to you.

Ms. Nixon: Yeah, thank you so much for having me.