This week Elaina from Key Ministry, sits down with Sergei Marchenko, Lead Pastor of Chatham Bible Church, and Special Needs Parent. They discuss preparing for the holiday season, church inclusion, special needs parenting and more!
Listen Anywhere You Find Podcasts!
Elaina Marchenko: Hi, welcome to this episode of Key Ministry the Podcast. Today I'm excited to have a pastor and also my dad. On this episode, we're going to be discussing some of the ways that pastors can support families affected by disability during the holiday season, as well as his perspective as both a pastor and a special needs parent. So we're very excited to have a good discussion and we hope that it is helpful for all of you.
Sergei Marchenko: Well, thank you, Elaina. Thank you for having me. Big fan of Key Ministry and big fan of you!
Elaina: Can you just explain a little bit about who you are besides my dad? I know that's the most important, but your professional kind of history and also your family life, because I think both tie in really well together.
Sergei: Sure. Yeah. So I'm a pastor, so I've pastored several churches and I am at Chatham Bible Church in Hazelwood, Missouri, which is really in the St. Louis area. We just have, we're a normal church, I would say we're pretty healthy and just kind of a regular church, good, strong community, gospel-centered. And I have two children with special needs who are with us in our home, although they're getting to be young adult age now and two grown daughters who are out of our home, out of the house now. And so, yeah, I am sort of in a, I don't want to say unique situation because actually there's a lot of pastors who are affected by disability too. But it is a different situation because I am looking at ministry and church from the pastoral perspective, but also from perspective of a parent of children and now young adults with disabilities.
Elaina: Yeah, that's great. Can you give us a brief overview of what disability looks like for your daughters at home? And I guess just a brief overview of what disabilities they're affected by and then also how that affects your family and the stage of life you guys are in.
Sergei: Yeah, so Polina, our third daughter, was born in Ukraine with the diagnosis of Down syndrome, which was a surprise to us and that kind of put us into the world of disability and special needs, and that was an immediate effect on our lives. We felt like we needed to leave Ukraine where we ministered where I'm from. So my home in a sense, we were pastoring a church there. We had to leave to take care of her and take care of our family. And so we moved to the states and never moved back to Ukraine, even though there's still a part of us that really misses it and wants to go back. So there's that immediate effect. And then we adopted Evangeline, who's our youngest, and she has Down syndrome and autism, dual diagnosis. Now since then, Polina had an additional stroke disorder that required a couple of surgeries and affected our lives.
Then although long-term, she's not affected to a day by day. We're just sort of watching it. Polina is very verbal. She is kind of semi independent. I always say she's a great kid. I mean, when we think about her and the kind of person she is, she is just a gift to us and to our church, and we can talk about that a little bit later. But she is a joyful spiritual person. She follows Jesus, she reads her Bible, she witnesses. She's a very loving person, and so she is semi-independent. We need to help her with some tasks, but she definitely can take care of a lot of it. She can take care of herself and that's been an interesting transition, seeing her mature and become more independent. She's 18 now. Yes, that's right.
Elaina: Which means a lot to her. And I think at least from my perspective as a sibling, I've seen a big shift too. She takes a lot more responsibility for herself, because she's an adult, and she, I think takes on more independence in that way.
Sergei: And yeah, don't refer to her as a kid, she is a young adult! There's definitely self-awareness there on that. She's a senior in high school, so she goes to, we have a special school district in St. Louis, and so that's a school that's all for disability, special needs, and that's been wonderful. And this is her second year there. So she went through public schools but had help. And now we've transitioned into all special needs school and our youngest Evangeline, who's got Down syndrome with autism, she's nonverbal and she requires ongoing care. It's constant supervision and help. She's in the same school, though not in the same class as Polly, and that's been her school and her school district throughout her time. And I think she's doing really well. We're also adjusting to her getting older and there's different challenges that come up as kids become young adults and become older. But she is a very different personality. And I think part of the struggle, I think of perception of special needs is that there is certainly, "oh, you just have two kids with special needs and kind of the same." No, very, very different, different relationships, different needs. Absolutely.
Elaina: Even both with Down Syndrome, they're not at all the same!
Sergei: Right, totally different. Yeah. But both great and wonderful. We love both of them and have a lot of affection toward both of them, but very different relationships. Yeah,
Elaina: That's so true. Well, and I know that. That helps us paint an idea of what your family life is like and also the season you're moving into, which I think isn't seen it more as less talked about because it's longer, but when your kids grow up and you haven't hit it yet, but when they finish school completely, what does life look like when they're really adults? And for both of your kids, my sisters, it'll be different because of their needs and what they can do and what they need help with still. And I think it's just a lot more of a nuanced time than cute little kids with Down syndrome that everyone kind of knows and loves. That's a very different stage of life.
Sergei: Absolutely. And we've seen, and like you said, we're just entering that stage so we don't know what to expect. We are trying to talk to other parents whose kids are older and we're also just getting a lot of help with social security and I mean Medicaid, there's all sorts of things that come up when they turn 18 and there's legal guardianship and I mean all that stuff we have to work through. So we are getting a lot of help and advice from others, but once you get into that, now you're parenting adults, but adults with disabilities, especially post-school, which we still have a couple more years, but to me it feels like that's going to be a whole new world and that's just kind of how it's going to be, I'm assuming for a while. So that's going to be going to feel more permanent, I imagine. So yeah, so we'll see what the Lord does.
Elaina: Okay, so it's October. So as we're entering holiday time, maybe it's a little early for some people, but I don't think it is for families of special needs and affected by disability because usually anything big happening takes a lot of preparation, even if it's mental preparation or actual resources, materials. So we're trying to get ahead of it here and just provide as much as we can for families, especially families attending churches that might do holiday things. And so I want to take advantage that your pastor and that you're a parent starting with you as a parent. What are some of the things maybe that just quickly you think about the holidays and all of that includes traveling, family, food, all those things. And obviously it's different for every family, but what does that immediately bring to your brain? What kind of stressors come with that?
Sergei: I think I have two maybe conflicting emotions when I think about the holiday season in the world of disability and church ministry as well. One is there is the level of stress will get higher, so there's an expectation it's just going to be harder. But there's also, for me at least, there's also excitement of the holidays and Christmas and you think about family time and church ministry events that are joyful things and thinking about being part of that with my kids specifically is also there's a happy feeling too. And that's probably that mixture of feelings, feeling happy and yet stressed. You're excited about the season, but you also know it's going to be difficult.
You're looking forward to things like family time and typically there's more people that come back to the house. So there's sibling interactions that a lot of it is fun and good things to, but also the stress level is just much higher. And I mean in some ways that is the world of disability. There's so many things that we as special needs parents and ministry leaders in that field love and really enjoy. And yet there's also real struggles and real limitations. And so for the holiday season for pastors, that's typically a busier time. You have extra things and that coincides with, in my case, with my kids with disabilities being home from school for part of that time.
As far as from the parenting perspective, we try to make that time meaningful for them. And so we do extra things. We do the advent readings with our kids and we have certain things we do. We try to do something for our neighbors or for somebody and include them in that. And then of course Christmas Eve and all the extra services and then family time including them and making cookies or whatever. But we're always, I think my wife and I are always looking at how far can we push and knowing that at any moment we need to kind of back off a little bit, especially for Evangeline, I think Polina is different. She can, I mean she's very social, so this is her best time with family and church stuff.
Elaina: This is the best time for her.
Sergei: For Evangeline, we have to manage how much stress she can handle and especially during certain seasons of certain emotional struggles that she's had, there's things that we can't do and that's limiting. It does feel like we're excluded, not because anybody is excluding us, but there is a sense of we can't really do what every other family can.
Elaina: That's just the reality too, unfortunately.
Sergei: It is the reality and you learn to live with that. And that's part of this gift that we got. I think from the church's perspective. Yeah, it's similar. You're realizing the families affected by disability are going to be more stressed, so you're trying to maybe come alongside in some ways and check in. And many of them are on the same school calendar and having the same those breaks. So you try to share resources. For example, in St. Louis we have Variety, which is an organization that nonprofit that sets up camps and they have a winter camp and Our kids usually do that. And you, Elaina helped out I think one year with that.
Elaina: But it's great because when they're on winter break, which isn't, for anyone else, it's not very much time. But for kids affected by disability, I mean that can feel like a really long time in the middle of the time where they're usually feel like they're in school. Even if this break is every year, I feel like it still seems weird probably to them, Why am I not in school? This isn't my schedule, there's nothing to do. The rest of us are like, we get a break, we can read a book. Nice. So yeah, that's great. Variety does a great job with that. They fill in the gaps, which is really helpful.
Sergei: They do. And it's a great organization. So to share that resource with families in our church that can benefit from that is helpful. I mean, so thinking about it that way and thinking like, okay, how can we, maybe not as a church help, but are there other resources that we can share? And I think that's good. And then also being careful kind of how I shepherd or we as elders shepherd our families with special needs and understanding that it's a more stressful time, but also understanding that we can't decide for them what they can't do or can't be included in. And so still trying to include those families as much as they're able to, they want to. I've learned sometimes I just think, well, they're overwhelmed, so certainly they would not want to do that. Whether it's a ministry opportunity that they can lead sometimes or serving or just a participation thing.
And so I'm learning to just be more careful not to assume that and ask and have them say, no, that's okay. So not put pressure, but also give opportunities. So for example, we do, we typically have advent readings in church during Advent and Christmas. And so we would recruit various people in the church and we try to usually try to get newer people in that way. And so we include needs families in that even though we know we have one family that I think they did the reading last year, maybe that's tricky for them. One of their kids, he just kind of needs to be held tightly. So when you're trying to light candles and do a reading, that could be a little tricky. But I didn't want that to be like, well, it's so hard for you, don't worry about it. No, I wanted to give that opportunity and then help them. So I kind of had to walk them through it and say, okay, it's fine if you want to stand here or do it this way. Don't worry about any sort of how it's usually done. And so you give that freedom and flexibility, but also include people as much as we can. I think churches need to include people.
Elaina: That's good. I really like that. I think that probably pastors or other leaders in good intention wouldn't maybe ask families to do something like you're saying because they're thinking, oh, it's overwhelming. But sometimes that can make them feel further excluded, even if they just need to be asked and need to say no. It's better to ask even if they say no than to just assume that they don't want to.
Sergei: Yes. I think that's true. And what we don't realize often in the disability ministry world, and I think it's talked about and sometimes it's practiced, but it's not common to have people with disabilities actually serve others and take on maybe even some leadership in the church and use their gifts that can be completely outside of disability. It doesn't have to be connected with their disability, but spiritual gifts for the good of the body, I think that's really meaningful for them. Certainly it's really meaningful for the rest of the body and important. So whatever we can do. And so Polly is a high functioning kid with Down syndrome, so she's the poster child for that kind of thing. She can do a lot of things. She's happy, people love her, and she's my daughter, so I sort of just make it happen for her.
So she's included, she's done different things. At some point she passed out bulletins and greeted people and that was really cool. She genuinely a happy person and she wants, she's happy to see other people. She's in a rotation on our worship team and she sings and with her mom, they do it together. So Polly usually has a song that she comes up and sings. Is her gift singing? Probably not even though she would say that, but it's her gift leading people in worship. Yeah, I think her joy, that's actually just joy of the Lord and she is able to express it and she's able to pass it on to others. That's incredibly meaningful to our congregation. To see Polly sing and to hear her sing and the joy that she has. That's great. So that's a way for her to serve as well as for her to be included. Now again, can't do it with every kid. There's all sorts of circumstances,
Elaina: Right, Evie would not like that. I don't think she would like being on stage in front of everyone with a lot of noise.
Sergei: No, but we've had times, it's interesting, I don't know if you remember Elaina, that would be some kind of kid's program, which is like VBS or Christmas, and all the kids who have practiced and prepared will be on stage. And of course Evie typically wouldn't be part of that whole program, but when they sing, sometimes she would come up and she would just kind of stand a little bit to the side and sometimes she'll get a tambourine or something. And so that's a way for her to be included. That's how much she wants to be included. We have room for that in the church. We kind of create that space. Nobody's surprised if something like that happens.
Elaina: Yeah, no one's like, “this isn't part of the plan. Get her off!” I appreciate that about your church. It's, it's just welcoming in general. So even if things happen and it's not planned, or even sometimes weird things happen, you guys kind of just roll with it. And I think that gives people a lot of space to do their version, not version, I guess, to serve in the way that they feel comfortable and they actually feel like they're participating and serving.
Sergei: And so in a sense, so this is my pastoral take, I think you create a culture in the church that works for all sorts of goals you may have and supports it versus you really create one specific ministry. So in the world of disability, often the conversation is, "Okay, what can we do for the disability community?" That's a great question and I'm glad it's being asked a lot now. It seems like a lot of churches are engaging and a lot of ministries like Key Ministry and others that are pushing that, let's be aware. Let's figure out a way to serve. I think that's excellent, but that could be just a church doing a program, and that's not the same as being part of the same church. And it works in many other ministries too.
You can create a program, you can do something for somebody, but they never really become part of you part your church. And so my approach is it's like work on the culture of the church that will able to accommodate anyone and we'll have space for any kind of ministry the Lord may bring to you. So you may not have a refugee ministry right now in creating a program, but are you a kind of church that can be open to a ministry like that? So are you welcoming in general before you start welcoming a particular group of people that may not be welcome in most churches you have to just be a welcoming church. Are you a church where people easily engage in serve each other because that's going to really matter when you have a higher level of need?
So for me, a lot of we're talking about disability, but to me a lot of it is about church in general. It's the kind of community you build. If people freak out when a child makes a noise, that's a problem, not just for children or not just for disability, if it's a child with disabilities, it's a problem for the church. That's something that needs to be changed in how that community lives.
Elaina: And how does that happen for you from the pulpit? Some pastors really don't like extra noise or they react a certain way. And I think that how the pastor reacts to things affects a lot of how the congregation will react to things. So I don't know if you can speak to that.
Sergei: Yeah, I mean I don't get angry and yell at people when somebody makes a noise.
Elaina: Well it would by hypocritical because it's your pew.
Sergei Marchenko: It's usually coming from our pew. Yeah. So yeah, I don't know. I think we probably have maybe six families now who have kids with disabilities at various ages. And then we have several adults with disabilities. So plenty opportunities just from the disability part of our church to make noise. But there's also kids and there's infants, there's people. Somebody can wake up unexpectedly in the middle of a sermon and they can make a noise. I think you set a tone. In my view, a lot of it is about the tone. It's kind, if I'm not startled, then people kind of think, oh, it's okay.
Elaina: I agree.
Sergei: If I'm not reacting negatively, I mean sometimes I would interact. Sometimes it's an opportunity to acknowledge something and that's good. That could be a good moment for the church. Sometimes it's just really funny and we laugh. So you laugh at it. I think you're right that the pulpit, obviously the teaching pastor, so the person who is there most Sundays and is speaking from scripture is a very important person in the church, an important leader. And we do get to set the tone of the church, but there's also, we're limited in our influence too. I think a lot of change happens in relationships and in kind of normal interactions on Sunday or throughout the week. So I don't want to overstate the influence that we as lead pastors have too, but I would say we make little changes and we just do things that become normal for the whole church. It just becomes, so language would be one instance. You just use respectful language of all people. That's good. And that may correct somebody without maybe them knowing that they're corrected. You know, "Stand as you're able," that kind of stuff where you're just more careful. And then pretty soon everybody says the worship leader, the elders, everybody who says rise, they'll just say "Rise as you're able," not if you're able. So
Elaina: That's your tone, you’re setting. And that can be from anyone that could have started from the worship pastor or whatever.
Sergei: And the worship pastor is really important here. Or the worship leader, especially if it's a consistent person every Sunday, they have a lot of influence over the church. And so how they talk about disability is important, if they do. But I guess I don't hear often people talking about the worship pastor being involved in this, but I think they are.
Elaina: Totally well because leading, they're a huge part of the tone setting, not just preaching which matters obviously, but preaching is not usually a conversation or a dialogue. It's really giving a message. Worship I feel like is much more dialogue where they're saying things, they're wrapping up the message, they're giving snippets of things to take home and that really can affect families.
Sergei: Absolutely. And also I would also put the whoever is praying, which sometimes is the pastor, other times we have elders rotate and pray and I'm one of them. But how that elder prays, how that elder prays for somebody with disability or that matters, the kind of language that is used. Are you praying for somebody to be 'normal' again? That would be bad. So some of it is education and training. You're just learning how to do it better. It's often not coming from the wrong heart, it's just people are just not familiar with it. But some of it is, it happens because we know each other in the church. And so you just learn to love different people and learn from them what their lives are like and what's a good way to describe things, and what's not.
Elaina: I think you're right that it's a culture and sometimes it's very circular because you create a culture by doing things.
Sergei: Yes.
Elaina: So it is reaching out to a specific group that creates your mentality that you reach out to all of these different specific groups that then you're a welcoming church in general. It does kind of have to start from a point, of whatever it is your community needs. And often it is disability just because it's so common. So that just made me think of that you do still need some sort of, the conversation still needs to be there, even if it's not a fancy ministry, it still needs to be that there still needs to be people praying over that, thinking about it, welcoming people with disability. And then also people like you saying, yeah, when we go to church, something that really matters is that if one of my kids has an accident, it's not super embarrassing to clean it up. That's something I've noticed that makes me feel uncomfortable. If we visit a church and somebody pees, which happens in our family, who knows why!
Sergei: I don't know if it's typical of other families, but it's a big theme for us
Elaina: It may be a Marchenko thing. So it makes me feel more welcome if it's not like, "Oh, we got to call this person, then this person, you wait right here." Or worse, you just clean it up and then you're there with paper towels cleaning it. I mean, this is a very specific example in my brain of what's happened, but it makes you feel welcome. If someone's like, "Oh, I got it. I'll take care of it. No problem here, go sit down." That makes me feel welcome as a sibling. So there's just little things like that you need to set-up beforehand.
Sergei: You're right. And so this is a specific application of a general spirit of welcoming and serving people who come into your church. And you're right that it comes out of a culture, but it is specific too. You have to learn to do that and you have to keep talking and training, and learning.
Elaina: There has to be people that know that can happen are ready for it, and it's not a big deal even though they've prepared.
Sergei: Yes, I totally agree with you.
Elaina: Totally. Okay, so wrapping up holiday, are there outreach events you feel like are most helpful and geared towards disability families?
Sergei: Yes. So I have some thoughts on outreach and holidays as part of that too. And we've done stuff, we've done stuff in Chicago in our previous church, which was much more focused on disability outreach and ministry. And we've done things here too, specifically geared towards the disability community and the newer people to us from that community. So we've done respite nights and when it gets towards the holidays, it becomes Christmas themed. We've done just specifically including kids with disabilities into Christmas programs and things like that. So we've done that and I think it's good to do and I encourage churches to do that. And if you have the resources and the volunteers, yeah, I think a respite night is a great way to serve those families, especially in the stress of the holidays. And maybe you can promote it as you go do your holiday shopping while we are hanging out with your kids.
Elaina: And like you said, they're all at home, so they need an activity. So that's a great time.
Sergei: Sometimes it's in the middle of a stressful stretch when they're looking for stuff to do anyway. So I think that could work. And especially respite, the way we've done respite is we include all the kids from that family. So the parents actually are now free to do whatever they need to do. They're not also watching their other typical kids.
Elaina: Which I love as a sibling. It was not weird. It was a blast. I felt like a celebrity. It was amazing.
Sergei: It's fun. You need a lot of volunteers to do that well, and you need to train and you need to keep the kids safe, and you need to know enough about special needs and disabilities to know how to handle different things.
Elaina: You can't just do it, but it's really fun and it's worth it.
Sergei: And often what I've noticed is obviously it's the parents of your special needs families in the church that are going to be involved, which defeats the purpose for them. That actually puts more stress on their holiday experience. So it's tough. That's a hard one to, I don't even know how to approach that honestly. But you also, your other resources like people, special ed, special education teachers or aides or siblings, grown siblings of kids with special needs. So there are other people who are actually really knowledgeable and know how to do stuff, know how to handle things
Elaina: That aren't parents
Sergei: That aren't parents that at least should be in the mix. And that would be an example. I think you can do some sort of gifts for those families especially. So if you have a disability family in your community that's struggling and they have a child with disabilities coming alongside, even they're not part of your church, coming alongside over the holidays is really meaningful, getting a meal for them, or Thanksgiving meal for example, or presents and stuff. I mean, we've noticed in our interactions with families that are struggling in our community, a lot of them are affected by special needs and disability. So it's almost like, I mean, you have different ministries converging here. So our regular mercy ministry, yeah, it's they're going to deal with special needs and disability too.
Elaina: And they work hand in hand with the people that know about disability. And it's good because it serves the whole family, which is great.
Sergei: Absolutely. And for them, for somebody from our church to go and serve a family and discover that they have a kid with autism and they could say, "Oh yeah, we have a couple of kids with autism in our church," and they're familiar. I mean, I think that's meaningful and that's helpful.
So the other side of that is I think we just need to acknowledge that families with special needs and disabilities, they struggle. It's hard. And sometimes you can offer something good to them that they're just not going to have the energy or the motivation to take. Now, that may actually be good for them if they showed up, but you need to expect this barrier of just they're overwhelmed typically. And so I think even just acknowledging that it's hard, I think it could be really meaningful. So I try to do that from the pulpit and even during the holiday season of saying, yeah, it's tough. Christmas break is hard on a lot of families. It's not just all hot chocolate and skiing in Aspen. It's hard and understanding and sympathy and connection. I think those are really significant things, and that's beyond what you can do, the services you can provide or an outreach event. And of course for me and for Gillian, my wife, it's easier in the same world, although we're also in ministry.
But I think even for people who are not directly affected by disability and our ministry leaders, I think just when you're walking around and you see a couple of kids sitting on the floor, whatever, playing Pokemon. For an adult to sit down and be with them and come into their world is really meaningful for them. It's also weird. It doesn't happen, but that's what builds that connection. And so whatever that looks like for a typical family or a ministry leader to come into the world of a family with special needs and disability, you have to sit down on the floor and do stuff they do and learn and just be there. I think so much of it is just be in there and being friends.
Elaina: Yeah, I agree.
Sergei: Yeah.
Elaina: Once you're friends, you actually know how to serve them because if you're friends with a family of disability and their struggle, like you said, is leaving the house, there might be actually things you can do to help and you just don't know. And they're going to just not even realize they're telling you. There's just a lot of ways that you could be friends and just know, as someone on the outside who's not completely overwhelmed by those things. Sometimes they're smaller than families realize just in it and you can help.
Sergei: Find out what they think is helpful. Because sometimes good intentions and people want to serve, but what they do is crearing more stress. Totally. It's a weird thing because on the one hand, speaking as a special needs family, we don't want to be intruded upon and our routines to be disrupted. That could be really stressful. So sometimes people showing up at the door could be really stressful. On the other hand, we don't want to be discounted and we're like, look, we can never have their family over because they're overwhelmed.
Which may be true, but invite us. And so we've tried to do that with other families, special needs, which of course it is easier for us because set up for it in some ways with our own kids. But kids are different. There's different special needs and disabilities, and sometimes we're not. We don't know totally how to do that totally. But on the other hand, our house, for whatever reason, in God's providence has wide hallways and wide doorway, and it makes it easier for somebody in a wheelchair to come. And so we have a young lady that is in a wheelchair that comes to our small group. And I don't know that we're doing anything special in a sense, but we are intentionally including her. We're intentionally inviting people over.
Elaina: Well, there's mindfulness because if you guys didn't have those hallways and doorways, I would hope you'd be like, "Oh man, we need to find a different space." And that's how you include her by God's providence. Your house is set up for it. But the mindfulness!-
Sergei: But we advertise it when we're inviting somebody in a wheelchair over, we say, oh, don't worry, we got, it'll actually not be that difficult, that's helpful.
Elaina: Which is huge! Something I can think of too, is we would, growing up, we didn't go to people's houses as much, but we had people over because it was easier to manage our family in our own space. So there's a lot of things you can do too, where if you invite a company and they're like, well, it's not great for us to leave. You can offer to go over to their home, or you can come up with a plan. And once you're opening the invitation, it's easier to make those adjustments.
Sergei: It's a good question to ask. I want to get together. We want to hang out what's best? Is it easier for us to come to you or is it easier for you to come to us? We'd love to have you over, but is it going to actually be helpful or is it too much stress for you?
I think conversation between friends, it should be normal to figure that out. I would say that for our family. It's interesting that you say that. We didn't go to other people's houses a lot, which is true. I think it's absolutely true.
Elaina: I'm like, maybe I'm miss-remembering.
Sergei: No, no, I think you're right.
Elaina: I just remember that being kind of a novelty and exciting, like, "Oh, we're going to go to their house!" If we did.
Sergei: And part of it's, we didn't get invited to a lot of houses even here at Chatham, which is a much healthier church than in Chicago, and there's a lot more people that we're connected to. We still don't get invited a whole lot to other people's houses. It's still mostly people coming to us, which honestly, sometimes it is easier for us. We would rather host our small group than go somewhere else.
Elaina: Totally.
Sergei: Yeah.
Elaina: Because its neutralizing so many of the factors that can cause stress and you can control things.
Sergei: For sure. On the other hand though, it's nice to be invited and sometimes we can come and sometimes we can't. And I understand why people hesitate to invite us over. They don't know what it's like and they assume it's going to be hard and it is. But also some people have invited us and we've said no several times and they stop inviting us. That's on us. But I do think there is something to be said going back to the beginning of this conversation, don't assume that this family can't come over, even if they have significant disabilities or special needs that they have to manage.
Elaina: Totally.
Sergei: Don't assume that they don't want to. And the invitation is meaningful,
Elaina: I guess, with disabilities that are obvious. There's a lot of hidden disabilities that maybe that doesn't apply to, but you know that because they invited you, they thought about it, they're like, I actually invited you and I meant it. And I knew that that might mean we had to for when Evie was little, put things up, higher because she'll grab things or whatever those accommodations are. Maybe they don't have everything down ready to go, but they've thought enough about it to say, I'll invite them anyway. We might prepare a little bit, but we're going to make it happen.
Sergei: During the holidays when people have more time for social interaction, and I know a lot of families are busier because they're family obligations, but for a lot of people there is extra time, extra margin. So yeah, maybe that's a kind of an easy takeaway here. Connect with the family of special needs. If you're a church leader or just a church member. And if you're a special needs family, think about connecting with a typical family in your church or in your community and see, find the best way to do it.
Elaina: That might be more daunting even than a typical family inviting someone, a family affected disability inviting someone to your house might be daunting too. You can up to somebody and have a relationship with their family.
Sergei: I think it's initiating a relationship or maybe another level of relationship. And it's acknowledging that this person, this family exists, right? We're in the same community and so we're going to treat each other like we're in the same community. And so yeah, it doesn't have to be in your home. It doesn't have to be a full dinner. You can do dessert, you can go for a walk, you can go to a park. I mean, there's lots of options here, but there has to be intention here to connect.
Elaina: Great. Okay, my last question about holiday was I was curious how at home, so I guess we talked about church, but at home, how do you include your kids specifically? Evie, who I would say has autism, I would say probably level three like that. That's a new thing. I don't know if you've heard that...
Sergei: I've not heard this, I'm too old of a parent now too.
Elaina: It just helps people give an idea, like; nonverbal needs help with most tasks, that kind of thing. How do you include her in holiday? And like you said, advent, but I'm curious about the actual practicality. How do you actually include her when she might not be interested and/or her own challenges, limit what she might understand, what she might be able to be part of. And I mean, I think a lot of families probably relate to that. How do you actually include them?
Sergei: Yeah, well long as much as she can, we want her to participate in whatever the family is doing and there is tension there because a lot of times it's easier to manage the stress by excluding her. It's harder in some ways to include her. Gillian says, don't just assume she can't do it. And she also pretends that she can't do certain things. So there's multiple levels of mind games happening here. But I think inviting her and challenging her, maybe her even to be included in some ways, I think it's good. Sometimes it works, sometimes it doesn't. I know you guys have tried to include her in making holiday cookies or something like that. So it becomes a different project.
And maybe that means like, okay, we're going to bring you in for this time and really watch you, and then you can go do whatever you want to do and then we'll finish. And again, Evie, as you know, she's included in our family worship and she's there and that's part of her routine. She shows up. She knows where she wants to sit. Yeah. How much is she getting out of it? I don't know. But I also don't know what God is doing in her heart and in her mind. But she knows to pray when we pray she'll just take your hand and she'll pray with you. She won't say anything, but she will be quiet and kind of respectful. So that's inclusion on her level. But that's her. Polly obviously is a lot more included.
Elaina: That girl doesn't stop praying, different issue.
Sergei: Yeah, different issue. Very prayerful. But yeah, we want Evie to come to the Christmas Eve service, which sometimes could be challenging. It's later, she's ready to go to bed, but we want her to be there and we want to dress her up a little bit.
Elaina: I was going to say, there's a lot of things that just come to my brain of ways to problem solve that maybe your church doesn't need to be super late Christmas Eve, it could be a little bit earlier. Also bring them in pajamas, Christmas pajamas. How has disability deepened your understanding of God and your relationship with him?
Sergei: Yeah, I think from a personal perspective, but also something I try to communicate to the church is; this world is broken and we need somebody to help us and to save us. The experience of disability allows you to believe that truth. It reminds you of that. It doesn't allow you to be deceived by the world, which is very valuable and it should drive you to Jesus because in Jesus, there's a promise of ultimate healing. And I think that healing begins now. So I think for people with disabilities in the church, there's a lot of blessings that they experience now that we experience now, but we're still longing for that ultimate restoration. And Jesus promises that, and that's because of his resurrection. He is the first one to rise, but he is not the last one. We're all going to rise with him. And so I love the hope of that even though we're waiting in this, by the way, this whole idea of waiting, which is prominent in the Bible, it does come alive when you're in that world of disability or mental illness, you're waiting on the Lord to keep his promises, which are in Christ, and you trust him that what he said is true. You trust him that he will do it. You trust him that Jesus actually died for you and rose again.
Elaina: And so you said some of that starts now. What are some examples of that maybe that you see specifically with your daughters?
Sergei: Yeah, I think experience of community, for example, is huge because I think isolation is a real issue. And so having real friends and having real people in your life. So I think the blessing of hearing God's word and worship like Polly, she loves to worship. That's a huge blessing for her that she's in a church where she can do that. Yeah, I mean there's the real help that comes tangible stuff that comes through the church for people, acceptance...
Elaina: Yeah, I was going to say, the things that they bring specifically my two siblings, I can't really speak for anyone else, but those are who I've experienced with the things that they bring both to my life and to the church collectively are completing promises that God has promised us. They're actually completing, like Paul says a lot, completing our joy in the church and completing community and completing better understanding of who God is, his incarnation, all of those things. It's not just waiting, like you said, just waiting one day for healing. It's actually seeing, and maybe not healing, I guess in that sense of Down syndrome is gone or whatever, but seeing some of the things the church is missing, be fulfilled through the brokenness of the world that God has promised to use. And I think that is really cool and so true. I think that's a good point.
Thanks for listening to Key Ministry, the podcast. As always, if you love the content that we put out, make sure and leave a review either on Apple Podcasts, Spotify, or anywhere else you find your podcasts. If you have a specific topic that you're interested in hearing us talk about, please make sure and leave a comment on any of our social media websites or profiles, or feel free to email us at contact@keyministry.org. Thanks for listening!
