In this episode, Sandra interviews Stephanie Hubach to discuss how churches can support all the members of a special-needs family. What challenges do they face, and how can the church provide hope and help for these families?
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Quick Links:
Abiding in God’s Presence: A 31-Day Devotional for Life for Special Needs Parents and Caregiving Parents by Stephanie Hubach
Same Lake Different Boat Stephanie Hubach
A Difference in the Family by Helen Featherstone
Confronting Christianity: 12 Hard Questions for the World's Largest Religion by Rebecca McLaughlin
Jeff McNair, Ph.D. information on Social Ramps
Transcript
Sandra: Hi friends! Welcome to Key Ministry: The Podcast. I am one of your cohosts, Sandra Peoples, and today I am joined by Stephanie Hubach, author of Same Lake Different Boat and Abiding in God’s Presence: A 31-Day Devotional for Life for Special Needs Parents and Caregiving Parents. And so I am very excited to get to talk to Stephanie today because she and I have so much in common; I have been mentored by her through her books and anytime we get to talk in person, and so I am super excited that you are going to get to listen in on our conversation today as we really focus on how churches can meet the spiritual needs of special needs parents. And so I know our primary audience is ministry leaders, but there’s a big overlap between ministry leaders and special needs parents. And so we’re going to talk about how, as special needs parents, the Gospel provides hope for us, and how as ministry leaders we can encourage the spiritual development of the parents that we serve in our ministry. So, Stephanie, welcome! Why don’t you take a minute to introduce yourself?
Stephanie: Thanks a lot, Sandra, it’s great to be here. I always enjoy talking to you! [laughter] So this is a lot of fun. I live in Lancaster, Pennsylvania, home of the Amish, right? My husband Fred and I have two adult sons, our oldest son Brad and his wife Cecilia, and our granddaughter Caroline, all live in the DC area. And then our younger son Tim is our son with Down Syndrome. He lives at home with us in his own apartment. So, let’s see, for many years led the ministry for the Presbyterian Church in America, used to be called M& Special Needs Ministries, now it’s called Engaging Disability. And so that ministry continues on. Right now for the last five years, I’ve worked with our denominational seminary, Covenant Seminary in St. Louis. I’m their Research Fellow in Disability Ministries, which sounds a lot more hooty toot than it actually is. [laughter] So I do a lot of networking with people.I try to help build into pastors and Christian ed leaders and counselors, at the seminary before they graduate, an awareness of what disability ministry is, how to think about it biblically, what are some of the needs families face, and how can people who are church planters begin churches with this as part of their DNA so they’re not trying to steer the Titanic in another direction. [laughter]
Sandra: Yeah, you really have your hand in so many areas because you get to go and invest in future pastors and future missionaries. I mean like all these people who you equip and then they go out, and that’s a really exciting calling, I think.
Stephanie: Yeah, the seminary has been great because I used to teach a class there and then they said, you know…probably the best way for us to do this is to embed you in different things that we do so that there’s more exposure to this topic across students than there would be if it’s just the folks that take the one credit class that I used to do. So, the Christian ed students all read my book and go through that—all the students have to go through the basic Christian ed class—and then I also get embedded into the counseling classes and apologetics and outreach. So it’s kind of fun because it’s a completely different dance, right? I’m basically a jack of all trades and a master of none, right? [laughter] I’m the 30,000-foot view.
Sandra: Well, and the universal appeal of your message…it needs to be heard by everybody and this isn’t just a children’s ministry issue or it’s not just a special needs ministry issue. What we talk about and how we try to equip churches applies to everybody: counseling, ethics, systematic theology falls under all of those headings so it’s a really cool opportunity. I use your book, Same Lake Different Boat; I teach a cohort in the fall and in the spring and I use your book as one of our textbooks. It’s super helpful, especially the belonging and how we, families, need to be vulnerable about what we need from the church and the church needs to be vulnerable and make some changes to meet those needs and then you come together with that sense of belonging. So, that’s been a really helpful framework for me and for the students that I take through my cohort.
Stephanie: Do you know where I actually started—I saw you when you were talking and your listeners can’t hear this but you were trying to draw a diagram with your hand and I know which diagram you were referring to—and I actually used that in one of Tim’s third grade IEP meetings. It was a particularly challenging time and that’s where I came up with the model I used in the book and ended up applying it to church life. But it’s kind of funny how God just uses these practical challenges in our lives to help birth out how do I bring the Gospel to bear on this IEP conversation?
Sandra: Yeah, that’s really cool. I love that creating a solution for you, created a solution for churches. Like, I need this. I need this framework, this language. And then when you came up with that, think of the thousands of families and churches that are impacted by you articulating that and making that happen. That’s super cool. Alright so in our time together today we’re really going to focus on how our churches can support parents, like you and like me, because we have some unique needs. There are really a lot of things that are challenging in a unique way to special needs parents, especially in those things that really are the long haul. We’re in these kinds of things for the long haul. So what are some challenges that you think of that are unique to special needs parents or that we may just feel more acutely as special needs parents?
Stephanie: In Same Lake Different Boat I quoted Helen Featherstone who wrote a book, back in the eighties I think, called A Difference in the Family, and she talked about how families affected by disability experience differences in degree, right than other families. So there’s this tendency sometimes, to even in, especially in large churches to put people with disabilities and families affected by disability in some other distinct kind of category or ministry silo. And I’m not saying that that’s inherently wrong because that’s how large groups of people tend to organize themselves, right? I think it often communicates that the lives of these people are wholly different, completely different than other peoples’ lives, which really just isn’t true. It’s all the same stressors and struggles that everybody has it’s just often to a different degree in a cumulative way. So, not just in one or two areas like education or finances, but education, finances, legal issues, and social aspects of life. So it’s the cumulative effect of those things that can create a lot of stress in the life of a family affected by disability. But it doesn’t mean we can’t understand or relate to it if we don’t have a disabled family member. Right? There are still connecting points across the board on all those topic areas. So that’s the stress that comes from that cumulative effect. I think one of the outpourings of that kind of stress in life from families especially if they’re not well-resourced by friends, by caring diaconal ministries in the church, by even decent social service systems in their area, is the high level of frustration. Out of that can flow some resentment. And so I think it’s kind of a triad, right?
If the stress isn’t addressed well and understood well it can lead easily to frustration that can make you settle in an area of resentment and resignation.
Right? Versus acceptance, which is a whole different animal.
Sandra: Yeah, yeah. And I think we can get worn down sometimes. As you said, resignation, like we’re in this for the long haul, and if we don’t develop some good habits or have that good support system early on, by the time you’re my age with a teenager, and you feel especially isolated because your teenager can’t do the things that other teenagers are doing, and so the enemy whispers in your ear: You are too different. You can’t find community here. It’s not worth reaching out and asking for help. And so we have those hints of it and then they’re compounded by something that may be small and then it grows and grows. And until we can fight that with the truth of the Gospel, we are just in our loneliness or frustration or anger or resentment or whatever we would tend to struggle with anyway, it’s compounded as you said.
Stephanie: And then you could end up in a really, into this category of hopelessness. And of course, the message of the Gospel is one of hope, not just for the next life but for this life as well. And so that’s where I think the power of the Gospel to really address the everyday issues of our lives in a way that infuses hope. Where special needs parents will often try to find our hope in the material resources around us: if I just had better funding, or better caregivers, or caregivers that actually showed up half the time [laughter], better teachers if your child is still in elementary school. It’s not that those things don’t matter. I’m not saying the material doesn’t matter. But the anchor of our hope has to be in Christ Himself and in His provision for us, both material and centrally of Himself. That’s where the hope of the Gospel anchors us is Christ Himself in us. Right? Even if I don’t get the other resources I really want or feel that I need.
Sandra: Yeah, it makes me think of, in the Gospels, the hemorrhaging woman and how it says she went to doctor after doctor after doctor and couldn’t find relief. And so all she wanted on that day she encountered Jesus, she thought, “If I just touched the hem of His robe, I would find hope.” And then He feels that and He offers her so much more. He offers her everything that He is, calls her daughter, and heals her. And so you think of all those other places that – and we all do have to go to the doctor – so those aren’t wrong, but if we’re looking for all those places for our hope, then it’s in the wrong direction. But then we think we’ll get by with just a little bit of Jesus when He offers us so much more of Himself.
Stephanie: You know that Rebecca McLaughlin has a book out, the name is escaping me! [laughter] (Confronting Christianity: 12 Hard Questions for the World's Largest Religion) It’s a book on apologetics and she has a chapter in there where she looks at John 11 where Jesus lingers for several days and his good friend Lazarus dies. So He gets there and Martha says, “Oh, Master, if you had been here that he would not have died. But I know that You could still do something about it.” And Jesus says to her you know there will be a resurrection and that—and now I may be getting my story mixed up here—[laughter] the idea being that in the conversation between Martha and Jesus, Martha is living in this space between what she wants Jesus to do and what Jesus is ultimately going to do and what Christ does at that moment is point her to Himself and says I am the resurrection and the life. Your very life, Martha, is not in Lazarus being resurrected but in actually, completely, and dependently focusing on me. I’m sorry I tangled the words up a little bit. [laughter] That can sound really kind of abstract, but it’s not. And that’s part of what I did with the devotional, Parenting and Disabilities and Abiding in God’s Presence, is really looking at how is God very practically with us and for us in all these different dimensions of special needs parenting.
Sandra: That’s what I appreciate about it -- especially because it’s a devotion book – is that you can sit with that day after day, 31 days, you can sit in it and feel that hope that you write about with the practical examples from your life and then pointing us to Scripture and then, of course, reminding us of that hope that we have. So what are some themes that you really go to in the book? Maybe a favorite daily devotion or something that you’ve even continued to struggle with even after…you know sometimes I think we write a book and then we’re like OK we’ve mastered whatever we wrote the book on, but in something like this God just continues to teach us and show us the beauty of the Gospel and the truth of His word. And so what are some of the themes from the book that you’re still learning or some answers to the challenges that we have as special needs parents?
Stephanie: I think, I know I told you when we were talking earlier that I skimmed through it again this morning before – people think you’ll remember everything you wrote in a book [laughter]—so I skimmed through it again and I thought to myself, I need to reread this. I need to reread this for myself. And I do think that section on God’s faithfulness, that we have a tendency sometimes to think that God’s faithfulness…OK, well, here. So you’re on Facebook and somebody says, oh, we got the house we wanted, God was faithful. Right? What happens when you don’t get the house you wanted? Is God not faithful? God is faithful because He’s our covenant-keeping God. He has committed Himself to us in an unwavering way and if you go through and read all the passages in Scripture that talk about God’s faithfulness -- I haven’t figured it out statistically -- but probably at least half of them also say His steadfast love, it’ll be coupled together: God’s faithfulness and His steadfast love. His faithfulness and His steadfast love. And it’s His faithful, unwavering, and capable commitment to us, right? He’s not only committed to us, but He’s also capable of seeing the relationship all the way through. It pours out of His steadfast, unwavering love for us. And I think the longer I’ve been on this journey, the more I just need to continue to focus on God’s faithfulness to us and not because we got stuff we wanted [laughter], right? But because He is literally with us and for us, in even the small challenges of the day. Tim’s 30 now. So, there’s a whole new sort of wave of things you experience in the adult period in terms of the, not necessarily, in some ways you’ve kind of found your stride a lot more easily, but in other ways, there’s a relentlessness to it, to the patterns of certain aspects of living with a disability.
This can really weigh you down if you’re not focused on God’s covenantal, faithful, steadfast, abiding love to infuse us with the very energy we need to do the task before us for the day.
Sandra: Like that concept of resilience. His faithfulness leads to our resilience…
Stephanie: Exactly.
Sandra: …in the face of every day waking up and you still have this calling and you still have to be this parent and all your other peers are experiencing the same age of life that you are in a very different way because they’re not still caretakers in the same way that you are. And so how do I hold onto resilience? It's God’s faithfulness and His steadfastness for us—and that it meets us every morning with new mercies. So, that’s really cool. I love that. One of my favorite ways, when I face a new challenge, is to remember what God has done in the past. And so that’s a way that I speak the Gospel to myself to say God didn’t fail me here or here or here or here and He’s not going to fail me today. And so that’s that ongoing steadfast love that He has for us.
Stephanie: Yeah, my dad used to always say that faith is formed in the rearview mirror. By looking and remembering. And you see that in the Old Testament, in particular, a lot. Remember, remember, remember. Remember the faithful works of the Lord. And it’s not that it’s us remembering that validates God’s faithfulness. It’s just that we’re so prone to forget. [laughter] He cannot not be faithful. I mean in terms of His character, it’s impossible for Him to not be faithful. But it’s very possible for us to forget.
Sandra: And I think a part of that is telling, which is what you and I do in these conversations and what you do in the book is when I need to borrow some of that faith, your life speaks that to me. Because you have seen God faithful over and over again. And so it’s remembering but also telling. Like how we tell others that this is how God has been faithful to me and you can borrow some of that today if you need to because I have lived this, I have seen it, and I know we will see it in your life as well.
Stephanie: And I will need to borrow it from you at some point again. [laughter]
Sandra: Which I think is one of the ways that families like ours bless the churches that we’re part of. I mean if a family hasn’t experienced a Plan B situation, you know getting a diagnosis, and then they do that at some point, and then who are they going to look to? They’re going to look to somebody else who has experienced that in their own lives. And they see that in families like us and so then we have an opportunity to speak the Gospel into their lives and encourage them to say, “We’ve seen God faithful again and again.”
Stephanie: I think relentlessness is often referred to as one of those kinds of themes—I think you agree with me on this – themes that run through the life of a family affected by disability. I have a friend who says disability is not like cancer…you don’t get to the other side of it. And he doesn’t say that to minimize cancer in any way. But I tell people, if you like closure, don’t get into disability. [laughter] But, here’s the thing. I guess what I’m trying to say is that relentless is something that many people actually do experience in different areas of life and don’t actually see that connecting point across categories. People who struggle with addiction are in struggles that are relentless. Poverty can be relentless, right? All sorts of situations that involve emotional suffering and trauma can be relentless. There are a lot of areas in life where there is relentless difficulty and I think special needs families are particularly suited to actually—ok, I’m going to say it this way without sounding snarky—school the church in the best kind of way. [laughter] We know how to do crisis care. We aren’t so good typically at relentlessness as a body. We like the stuff that you can check off the boxes. Deliver the casserole. Send the card and move on to the next thing, right? And so I think we have a lot of areas to grow, and I’m not judging the church in any way for this—I love the church—as a society, we put people with disabilities out in the margins and institutionalized them for an entire century. So we’re still playing catch-up. In the United States for sure in terms of how do we do this much more integrated dance that the Scriptures talk about that we just culturally had removed ourselves from as a society for a long period?
Sandra: That’s really interesting. That’s one of those ways the church can come alongside families like ours and encourage us and strengthen us, but they collectively get compassion fatigue because of the relentlessness of it. That’s a really good way to frame it. So we have to continue, as a church now—now I’m speaking as we as church ministry leaders—we have to go to the Gospel every day and be renewed by that so that we can turn around and pour into the people that we’re caring for, the people that God brings into our community. That’s a lot.
Stephanie: Gospel fuel, right? [laughter]
Sandra: I like that.
Stephanie: You know you get Gospel fuel for forgiveness for remembering how much Christ has forgiven you. You get Gospel fuel for mercy by recognizing how much mercy, voluntary sorrow, enjoins itself to the suffering of another. How much God moved towards me in that way. And so all those different ways of actually when we remember again how God has been faithful to us in those ways that we are actually able to turn around and help to infuse that into the body of life of wherever we are. It’s really easy for churches to look at families affected by disability as consumers of their care. I’m not minimizing that there is care that actually needs to be offered. [laughter] Right? It does. But it’s so much more than that. And there’s always going to be an unhealthy tension if people with disabilities are perceived as consumers of the churches’ care and not those who have gifts and insight and blessings to bring to the Body of Christ.
So I guess my goal is always to help churches to look at families affected by disability with a positive sense of expectancy. Like, “Ooh! What’s God going to do here and turn our heads 90 degrees in a way we never have before to see the whole world differently” in the way He’s done that with my life with Tim.
Sandra: That’s awesome. I love that. That reframing of well, here’s my expectation, they’re going to come in and we’re going to have to invest in them and there will never be a return on investment, but a lot of times that return on investment is different. We just need different eyes to be able to see it and to value what families like ours bring to the churches we attend.
Stephanie: And I think that also there is kind of this avenue by which God’s doing a broader work, in areas of race, socioeconomic differences, cultural differences. In terms of broadening what Jeff McNair called social ramps, right? Jeff’s done a really neat piece of work taking the idea of universal design in our architecture where you try to integrate an architectural design that anticipates someone with a disability is going to be there so it’s not just a ramp on the side, but a ramp that flows through a staircase, for example. So how do we create social ramps in our churches that actually, with a positive sense of expectancy, expect a much broader group of people from our community than necessarily represents who we have in the house right now?
Sandra: That’s really cool. I’m always so encouraged when we talk. Like to think deeper, to love God more, to receive more, but also to turn that around and serve better and give better. For us, this has been a quick conversation. You and I can normally talk way longer than this. [laughter] But I know people are already getting a sense of the encouragement that they’ll get in this new devotion book and in Same Lake Different Boat so that they can continue to learn from you as I have learned from you. And just have their eyes put back on Jesus every day through your writing. Man, I appreciate you as a fellow mom and a fellow minister of the Gospel and all the ways that you serve your church.
Stephanie: It’s mutual, my friend! [laughter]
Sandra: It’s really cool to just feel, even from Texas and Pennsylvania, feel this kindred spirit of mutual encouragement and that we can keep doing it. We can keep plodding along and doing the good work in our families and in our churches and it’s worth it.
Stephanie: It’s absolutely worth it.
Sandra: It’s exciting. Well, my church has bought copies of your book to give to parents at a respite night. All the ones that came on a respite night got a copy of it. And so as churches are looking to do their own respite nights this fall, or maybe they’re looking towards the holidays and thinking, man, what can I do to bless these families and they want to do a little gift bag or something, I think slipping some copies of your book into those gift bags would be a huge encouragement. It’s been a blessing to me and I know it’s blessed the families of my church. Thank you for all of yourself that you’ve poured into this book.
Stephanie: It was fun. I really, really enjoyed writing it. It was a fun experience to do, actually, and as I said, I need to go back and reread it for myself!
Sandra: Yeah, it is the book, the gift that keeps on giving! Every six months or so, pull it back off the shelf and say, what did God teach me and how do I need to relearn this and how can these same words minister to me again?
Stephanie: My hope is that every page of it points people back to Christ. That He is with them and for them. And His saving grace and His provision, His faithful provision, and His advocacy in our hope for the future and all those different areas and that people will see Jesus more clearly.
Sandra: And live that out. That empowers their resilience and the way they love their families.
Stephanie: I like that phrase because it’s really true. It empowers their resilience. Jesus empowers our resilience.
Sandra: That’s good. Well, thanks for your time today!
Stephanie: Thanks a lot for having me. It’s been great fun! [laughter]
Sandra: All of the links that we talked about, even the link to the book, will be in the show notes so if you’re listening and you want to make sure that you get a copy of Steph’s book go to keyministry.org/podcast and the link will be there for you to grab and click on and then order 15 copies like I did [laughter], one for yourself and then one for the families that your church serves because I know they will be blessed by it. Thanks again for your time, Steph!
Stephanie: My thanks. Take care, Sandra!
