Season 1, Episode 5 — 4 April 2016
About this episode
Amy Fenton Lee discusses what faith communities need to do to be welcoming children with disabilities and their families. It’s more than the building’s physical infrastructure, but the content of worship services and educational programs, as well as the understanding of parishioners.
This is the second in a three-part preview of our upcoming conference, Faith and Flourishing: Embracing Inclusion for People with Disabilities, Their Families, and Congregations to be held on April 22nd in Nashville, Tennessee.
About the presenters
Amy Fenton Lee is the author of Leading a Special Needs Ministry: A Practical Guide to Including Children and Loving Families and has written extensively on the subject of special needs inclusion in the church. Through her interviews of church leaders, professionals serving the special needs community, and parents, Amy has developed a network of ministry-minded individuals passionate about inclusion of individuals with neurological differences. For three years and through 2014, Amy was the Director of Special Needs Initiatives for The reThink Group (Orange). During her time with Orange Amy created a conference track for special needs ministry leaders, piloted a modified curriculum for students with special needs, and produced two new resources to equip church leaders. In 2012, Amy served as the Special Needs Columnist for Children’s Ministry Magazine. Amy has presented workshops at a number of ministry conferences. She blogs at The Inclusive Church. You can follow her on twitter at @amyfentonlee. In a previous life Amy was a certified public accountant with Ernst & Young and has degrees in accounting from Baylor University and The University of Alabama. Currently, Amy lives outside of Atlanta, Georgia along with her husband and young son.
Donald Taylor is the Membership Manager at TASH and the producer of Amplified.
Announcer: You’re listening to TASH Amplified, a podcast that seeks to transform research and experience concerning inclusion and equity for people with disabilities into solutions people can use in their everyday lives.
Today’s episode is the second in a three-part preview of TASH’s upcoming conference, Faith and Flourishing: Embracing Inclusion for People with Disabilities, Their Families, and Congregations to be held on April 22nd in Nashville, Tennessee. We’re talking with Amy Fenton Lee about what faith communities need to do to be welcoming to children with disabilities and their families.
Amy is the author of Leading a Special Needs Ministry: A Practical Guide to Including Children and Loving Families, which will be out in a second edition in June 2016. She has worked extensively with churches to help them understand how to include children with disabilities. You can learn more about her at her website, TheInclusiveChurch.com and you can follow her on twitter at @amyfentonlee.
Donald Taylor: Amy Lee, please introduce yourself or our listeners.
Amy Fenton Lee: Okay, it’s good to be here. Thanks for having me. I am Amy Lee, and I often go by the full name Amy Fenton Lee. And I am a writer that specializes in helping churches include children with special needs. So my primary focus has been, for the last, gosh, eight or so years, on children’s ministry and then I’ve expanded some in to do youth and teens. That’s helping churches and church leaders be successful at including kids with, you know, any kind of difference or special need, and helping those kids become a active part of their faith community and the children’s ministry or youth ministry in a church.
And I blog at TheInclusiveChurch.com. I have written a book called Leading a Special Needs Ministry: A Practical Guide to Including Children and Loving Families. And I speak occasionally at conferences that equip children’s ministry leaders in churches.
Donald Taylor: Share with us a little bit about what you’ll be talking about the Faith and Flourishing conference.
Amy Fenton Lee: Well, we will be talking about the nuts and the bolts of disability mystery. Really, it’s going to be on, what do you need to have in place, what do you need to do, to be successful at including kids with special needs. And, you know, we call it a special needs ministry or disability ministry a lot of times in churches, but you don’t have to have an official he named ministry in order to include successfully someone with, you know, any kind of disability. But we’re going to go through what it takes, or what the churches who are doing it well, what are they doing. What is it that it requires in order for it to be, everybody involved to be successful whether that’s the child with special needs, the parents of the child special needs, the other kids, you know — all the fourth graders, not just the fourth grader with autism. And for the church leaders: how can all of them be successful and, you know, what are common challenges that churches experience when they try to grow a ministry or try to become more inclusive. And how do they tackle those challenges before they even become problems or how do they — what do they do to just create a really healthy environment for everybody, including people with special needs.
So we’re going to talk about that, and a lot of what I have learned from doing interviews with both parents of children with special needs as well as church leaders. Gosh, three years ago I think I counted and I’d done somewhere between fifty and a hundred interviews with church leaders. And since then I’ve done more than that, so I’m not really sure at this point — I think it’s probably safe to say it’s over a hundred. And I’m going to share some of those best practices that I’ve learned from from churches who will share: hey this is a mistake I made; let me help you not make it. Or this is a mistake we made and this is how we overcame it. And to share some some ideas from the churches who are doing inclusion really well, so that everybody can leave with some practical ideas that they can go home and immediately, at least, you know, make a stab at doing one thing, if not ten things. So that’s my biggest thing that I want to address.
And then we’ll be talking some about how to help parents — how to help parents help their children develop in their faith. That’s another thing, and that’s a big question churches are having right now — is churches say, hey, it’s our role to help parents help their children, regardless of ability, you know, to progress in their faith. Okay, so what does that look like for how we’re to help a parent of a child who may have some learning differences. So we’re going to address that and talk about how the church can be a partner with the parents. And it can be a really positive relationship there, and then how the church may experience — the church and the families that participate in the church — may experience a real unexpected blessing. Everybody — you know, we talk about this a lot though — that everybody can benefit when the church knows how to, and feels comfortable saying, hey, we can help all parents, we can partner with all parents, even parents who have children with learning differences, instead of being afraid of it, that they can walk confidently into helping all parents, you know, shepherd their child through their faith development and their spiritual formation.
Donald Taylor: Why is it important for people to consider faith when dealing with disability rights and inclusion?
Amy Fenton Lee: Well, I am a deeply religious person myself and I would say, you know, we all want to have meaning and purpose in life. We all want that. And so, you know, we can sit here and talk about how we need to have ramps and we need to have, you know, the practical: a door handle. We can talk about the ways to make life more accessible. But at the end of the day what really, you know, makes us all tick is, do we have an understanding of our own life purpose? Do we know what our meaning is in life? And where do we experience joy? All of those things are really important when it comes to the faith community. That’s where that gets addressed. That’s what makes us all tick and what makes life worth living: is knowing your purpose and having that meaning and that’s where it happens is in the faith community. So, you know, from my perspective there’s no place more important to think about how we can include everybody then in the faith community.
That’s the most important thing because — Rachel Naomi Remen [personal website | Wikipedia article] is one of my very favorite writers and, you know, she says sometimes we need story more than we need food to survive. Sometimes we need our stories. And so, you know, when we, when we make something accessible physically in terms of, you know, a door handle or, you know, a faucet, or a ramp. You know, that’s great and all, but it’s not enough to sustain us in life. And the same thing is true — you know it’s a good analogy to religion. You know, we can have our bread and our meat, and that can get us through the day. But really, it’s not what gets us through the everydays. It’s our story and understanding our own story and that’s just where religion and faith is so important. So from my perspective, you know, we all need to be thinking about how the faith community can become inclusive, because at the end of the day we all — we all — have disabilities. And so let’s make the faith community a place where every type of disability is welcomed — where every person who has every type of disability can be welcome.
Donald Taylor: What issues are unique to children in faith communities?
Amy Fenton Lee: You know, the issues that are there are unique to children, I would say, right now — let me let me answer that with, what what are the biggest area of questions and needs related to — from the church’s perspective: and that would be: how do we include a child who has unexpected behaviors or learns differently. And so the kind of converse of that would be, we have a need of children to be understood and for people to not judge too quickly when they see a behavior, that this is a child who either can’t learn or need somebody with really special training and credentials in order to connect with and teach that child. Because that’s just not the case.
So what children need is a place that they can go that they can be accepted for exactly who God created them to be. And so instead of somebody saying, oh, that child doesn’t respond in the way that I think he should respond the first time I tell him to share the toy; or, you know, when he gets frustrated he makes a loud noise: he shouldn’t do that. What children need is an accepting place where it’s okay to, you know, quote-unquote, not always do the right thing — at least not the first time, or the thirty third time — in where there’s somebody that can say, hey, I’m going to connect with you; how can I figure out what is your underlying need right now. And in the context of that need, in the context of how you learn, how can I share the principles of my faith in a way that relate to you, in a way that you understand, and in a way that that child, it becomes real. And where there’s not obstacles. Maybe it’s, you know, too bright light — lights that are too bright, or sounds that are, you know, really distracting to a child who has, you know, sensory issues. They need a place they can go where a church is willing to ask the questions: what does that look like to connect with you, and to figure out who you are, who’s on the inside, and look past whatever the initial, you know, behaviors might be that are unexpected.
So that’s what I would say, you know, children need. And what churches need is somebody to translate for ’em sometimes and give them the questions to ask in order to figure out how to get to know that child. And what to look for in order to recognize what’s unique about that child and to see — and I’m going to use a term that we, you know, we talk about in my religious circles. Sometimes we’ll talk about how — it’s really common to see a child’s behavior and quickly label is as disobedience and to say, okay that that person is in sin because of disobedience. And you know, that’s just not the case — so much of the time with, really, a lot of people. But you’ve got a child who is not great at communication; it’s just not their strength. And so they’re trying to communicate that they’re nervous, or that they’re hungry, or that they’re tired, or that there is some legitimate need. And they do it in a way that can look like disobedience; it can look like a rebellious heart; it can look like sin. And in a church setting, if the church leaders and the people in that church don’t understand, hey, this is the nature of what this child’s abilities or disabilities are: stop and don’t judge: stop and ask more questions — then you’ve created an environment and a very different place to begin for the child and for the family, you know, that has learning differences and has, you know, sensory processing, you know, issues, or just struggles in communication. You know. So instead of being a place of judgment, the church can be a place of, you know, questions — in a really healthy way; a place of just trying to learn about an individual’s preferences and strengths, and connect with them to help them develop spiritually.
So that’s probably &151; you know, I’ve gone off on bunny-trails there but — what children need is a place where they won’t be judged. And where they’re met by smiling faces that say, I want to know you, and figure out who you are, and what makes you comfortable, and what makes you uncomfortable, so that I could have a relationship with you, and so I can talk to you about having a relationship with your Creator, and about developing in your own faith.
Donald Taylor: What are some things that church leaders or lay educators or parents should know about explaining issues of faith to children with disabilities?
Amy Fenton Lee: Well, the most important thing is, you’ve got to figure out how a child learns – and by the way every child learns differently. Every child learns differently, or in their own unique way. And so, the most important thing is for – is to figure out how a child learns. And so that’s something that every parent is basically responsible to do for their child. They’re responsible for understanding their child in the unique language their child speaks. Because we all – all of us – have children, you know, that speak their own language.
I mean, my son is in the fifth grade and I’ll often say, oh when he does that, you know, when he makes that face, it means he actually does not like something. You know, all of our children have nuances and as parents, you know, we’ve got to get to know those nuances and then we’ve got to dial into them and go, okay, wait a minute, that’s how my child learns: is in the context of their nuances. So maybe you have a child who is an auditory learner. Maybe you have a child that is not an auditory learner and needs to see things in order to experience it. Or you’ve got a child who really does not learn well from abstract means and needs a concrete example: something to touch, feel, see, taste, in order to connect to that idea.
And that’s just really important in the church setting because if we want to help every person understand their purpose and meaning, we’ve got to be able to connect the principles of our faith to that person. And in doing so we’ve got to learn that person, learn how they learn, and then translate, you know – in my case it’s Bible stories – translate Bible stories, translate Bible principles, into a language that that each individual child learns, so that they can experience a faith of their own.
So it’s just so important for parents to dial in to their children and for churches to go to parents and say, hey parent you dial in to your child: tell us how your child learns. Hey, you’ve got a kid that learns primarily through music. Maybe we don’t have enough music that’s teaching the Bible story. Maybe we’re not interacting in a way that uses music. Maybe we’re not telling the Bible story in a way that requires reenactment. Because that’s a great way kids learn. You know, so it’s really dialing in and figuring out how each individual learns and then finding a way to make the tenets of faith accessible by teaching in the way that that child or that individual learns.
Donald Taylor: What are some common mistakes that the churches that you’ve visited have made?
Amy Fenton Lee: Well every church has a story of not doing things right when it comes to welcoming or including a child or a family with special needs. Okay. So every church has that. And the very best churches that do a phenomenal job of including kids with special needs all have made mistakes, first of all. And they’re able to embrace that mistake and they’re able to go, how can I learn from it, not how do I, you know – not just, let me walk away.
And, you know, I’m going to give an example here that some people relate to and some won’t. So I’m a female, obviously, I’m a woman, and I’m a woman, like many, who, you know, always has five or ten pounds to lose. And I’ve done Weight Watchers many times and every time you go to Weight Watchers they’ll tell you if you cheated this week and you made a mistake and ate way too many cookies, the worst thing to do is to go, well I just, you know, I ate too many cookies and I didn’t, you know, I didn’t lose the two pounds I was hoping for this next week, so I’m just going to not come any more.
Well, that’s what churches do sometimes, is they mess up with the family, they don’t sit down and ask parents, how does your child learn; hey, explain this behavior to me. They don’t do that, and so what happens is hurt feelings surface, and a family doesn’t feel cared for, and a church gets frustrated along the way. And maybe parents have expectations of the church that sometimes are fair and sometimes aren’t fair. But somewhere along the way somebody makes mistakes. And the temptation for the church is to go, well that didn’t go well and we just know we can’t do that. I mean, you know, we didn’t – this one time we tried – or the two times we tried even – it didn’t go well so, you know, our church, we just we just don’t do special needs. That’s just not our deal. Well that’s not right. That’s wrong.
So the churches that do special needs well are the ones who, you know, like I say, you know, I went back to my diet on Monday even though I messed up on Saturday, and I tried to figure out what strategies I needed to do in order to stay on task the rest of the week and not eat five sugar cookies. And it’s the same thing for churches: churches have to not give up, and to come back on Monday and go, okay, you know what: we messed up yesterday on Sunday. So what does that look like for us to either repair this relationship with this family. What does it look like for us to pray for them, because maybe they need a new start at another church; and so we’re going to pray for them, that a church blesses them. But what does it look like for us to not make the same mistakes next Sunday when another family comes and they too have a child with autism, they too have a child with a sensory processing disorder, they too have a child that, you know, has ADHD and has some funny little behaviors.
So that’s the – churches make mistakes, especially when it comes to relationships. And the best churches ask themselves, how do we make a mistake – we know we’re human – and now where do we go from here, and what we learn from this, and, God, how are you going to redeem the mistake we made? So I just want to say that, that every church makes a mistake along the way. The question is whether or not they, you know, come back on Monday and say, okay, what is the look like to get it right next time.
I also want to address one other thing that I see. I deal mostly with churches and with church leaders. And I deal with churches of all sizes, although the majority of – probably at least half of the phone calls I get, and emails are from churches that have pretty large memberships, that have over five hundred in attendance, and several have – lots of churches that I work with have, you know, many thousands of participants.
The churches that – what separates the churches that tend to be successful versus the churches that really, really struggle with special needs inclusion, is the churches that have someone that can champion and understands the family and the individual with special needs, and they understand the culture of their church and the needs – even the personal needs – of their ministry leaders.
Churches are really funny places with their own culture. And when you understand why people are often called into the ministry, and you understand the profile of a church pastor, of a children’s ministry leader; when you understand that, you are better able to navigate some of the challenges that happen in the course of special needs ministry. And it does because it’s so individualized. And you’re better able to translate the needs of both. Which you’ve got ministry leaders who are deathly afraid of failure and so they will sometimes avoid anything this seems difficult because they are so afraid of failure.
At the same time, you’ve got a family who’s saying, try anything; just please try, make an attempt to welcome us, make an attempt to help my child experience success. And give us a second chance: okay, my child put his hands over his ears and rocked back and forth when the music got too loud; don’t send us home. Don’t don’t make us feel like we’re worth less. Give us another try or let me explain more about my child.
So you have two sides. Both have their own needs. Some are legitimate, some that maybe not – aren’t always legitimate. I mean, we see that sometimes a little with ministry leaders. But they come from legitimate places and they have their own wounds. And when you understand both sides, you’re more likely to create an atmosphere in a church where people with with disabilities and differences interact with the rest of the staff, and are accepted, and are embraced by the entire culture of the church. That’s where you see that, and really that’s what success is. I mean, you know, Dr. Carter talks all the time about, you know, you can have a ramp into the building but whether or not you’ve got a ramp doesn’t mean people feel welcome and they’re really a part of the community.
And so when there’s an understanding on both parts, both for the family that’s effected by disability, as well as the church staff and, kind of, what some of their explicit and implicit needs and fears are, then you’re more likely to see a culture that really embraces – or at least makes an attempt to get to know one another, and walk alongside one another, and the barriers come down, and you see a person with disability valued and cherished and a part of a faith community, the absolute same as the person who – also has a disability: it’s just that theirs is less visible. It just looks different. It might be hidden better.
Donald Taylor: This is been a terrific preview of your upcoming presentation. Thank you for taking the time to talk with us today.
Amy Fenton Lee: Thanks, Donald.
Announcer: You have been listening to TASH Amplified. For more about the series, including show notes, links to articles discussed, a complete transcript and a schedule of episodes updated as they become available, visit tash.org/amplified. You can subscribe through iTunes or your favorite Android podcast app to have the series delivered automatically to your device so you never miss an episode. If you enjoyed today’s episode, please leave a rating for us on our iTunes page.
Our three-part series in anticipation of our Faith and Flourishing conference started last week with Peter McKechnie on how to start a ministry for people with disabilities and will conclude next week with Bill Gaventa talking on how congregations can support their members with disabilities beyond Sunday mornings. You can learn more about these three workshops featured in Amplified, plus the eleven additional workshops of the full Faith and Flourishing conference, and register to attend at tash.org/nashville. TASH thanks the following partners for their sponsorship of the Faith and Flourishing conference: The Vanderbilt University Kennedy Center for Excellence in Developmental Disabilities, Anthem, the Down Syndrome Association of Middle Tennessee, the Tennessee Council on Developmental Disabilities and SRVS.
TASH is a values and research-based advocacy association located in Washington, D.C., with local chapters coving 18 states. In 2015 we celebrated our 40th anniversary. We offer organization, advocacy, collaboration, scholarship and education for people with disabilities, researchers, educators, service providers and family members. In addition to this podcast series, we offer a scholarly quarterly, Research and Practice for Persons with Severe Disabilities, a popular magazine, Connections, a series of conferences. You can learn more about TASH at tash.org. You can receive updates from TASH on this podcast and our other activities by following us on Facebook or on twitter at @TASHtweet.
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We’ll hear from another outstanding advocate again in two weeks.
This interview was originally recorded on 15 March 2016.
This transcript has been lightly edited for clarity.
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