Today we kick off our summer interview series with Barb Stanley from Wonderful Works Ministry. She shares her perspective on growing up with a brother with autism and the kingdom impact when churches meet the needs of special needs families.
May 31, 2022; Ep. 88
Timestamps & Key Topics:
Episode Links & Resources:
If you enjoyed our podcast, please...
Today we kick off our summer interview series with Barb Stanley from Wonderful Works Ministry. She shares her perspective on growing up with a brother with autism and the kingdom impact when churches meet the needs of special needs families.
May 31, 2022; Ep. 88
Timestamps & Key Topics:
Episode Links & Resources:
If you enjoyed our podcast, please...
Carrie M Holt 0:00
Welcome to Take Heart, where our goal is to offer encouragement, give hope and insight so you can flourish and your journey as a special needs mom. As we explore monthly themes share inspiring stories and practical tips, our desire is to continue to serve you and new listeners. Could you please share a podcast with a friend? You can learn more about this podcast and our resources at our website, takeheartspecialmoms.com, and there are also links in the show notes at the bottom of this episode. Thank you for joining us today.
Carrie M Holt 1:32
Welcome to Episode 88. This is Carrie. I'm so glad you're here today. Today starts our summer interview series, and we're going to be hearing from Barb Stanley. Barb is the founder of Wonderful Works Ministry, which is an online disability ministry training resource that helps equip churches to serve families affected by disability. Growing up with a brother who has autism, Barb understands what life is like as part of a family who is affected by disability. She is an advocate who wants to see disability ministry become an expected part of every church. In 2014, she founded 139 Kids Special Needs Ministry at her church, and has been coleading it ever since. In 2020, she completed her master's degree in social work from The Ohio State University and founded Wonderful Works Ministry. This provides training that meets the needs of all Sunday morning volunteers, as well as the ministry leaders behind the scenes. All the materials through wonderful works are complimentary and can be accessed in the community through their Facebook group, which is the Wonderful Works Facebook group. To learn more, you can visit their website at wonderfulworks.net. We'll also have links in the show notes. Hi there. Welcome to Take Heart and welcome Barb Stanley. So glad to have you on the podcast today. Thank you for being a guest.
Barb Stanley 2:58
Well, thank you for having me. I'm really excited to be here.
Carrie M Holt 3:01
First of all, why don't you start out by telling our listeners just a little bit about yourself and, and your journey and experience with special needs family members around you.
Barb Stanley 3:12
Sure. My name is Barb Stanley, and I am the founder of Wonderful Works Ministry, which is an online disability ministry training resource center. That's a mouthful, but we make videos and resources for churches to use to learn how to serve students with disabilities. The reason that that is such a passion of mine is because I grew up in a special needs family. My brother Brian, he has autism. I was born all the way back in 1973, and Brian was born back in 1969. This was in an era before autism was well known, and the experiences that I gained growing up feeling a little bit different than everyone else around us in society impacted me in a way that I just really felt like I wanted to help help other families who have children with disabilities be able to be included. So that's how I got here.
Carrie M Holt 4:16
Yeah, definitely. So what was that like? I mean, he's your older brother. I know in April, we actually interviewed our other children, who are the siblings of special needs children. I feel like parents and other people, it just resonates so much to hear from siblings. It just gives you a very unique perspective. What was that like for you growing up with your brother being older, and I'm sure your parents not having the resources that are around today?
Barb Stanley 4:51
Yeah. Well, I will start by just saying if I could go back and do it differently and not have a brother with autism, I would not do that. I am extraordinarily grateful for the experience that God has given me and for my brother and for the experiences we have had as a family dealing with his disability because even though it was really hard, I feel like it has made me a deeper person, a better person, a more compassionate person. I just really love my brother the way he is. It would be sad if he were different. I want to start by that. If you are a parent, and you're wondering, what are your typically developing children feeling like. I want you to know that it's more of a blessing than anything else. It doesn't mean it's always easy, because it's not. It is not. It means that there's an opportunity for the hard things to benefit them as a person going forward in their life.
Carrie M Holt 5:53
Definitely. Yeah, that was the one thing I think that came out a lot in those podcasts, you just have more compassion, you have more acceptance of people who are different from yourself, because you can look outside of what can be kind of our narrow view, sometimes I think of life. What type of resources and things are out there now that you wish your family would have had growing up?
Barb Stanley 6:24
Well, okay, in all honesty, there was literally nothing when I was growing up. I grew up in West Virginia, which is a great place, I really enjoyed my childhood there. I was in West Virginia in the 70's and 80's and in the 90's. There was nothing. I think he went to see a tutor, like once a week, just a local tutor. It wasn't anyone that was specialized in autism. He never went to the same school building that I did. We were never in the same school, because he had to go from school to school to school, whichever school had some kind of special education class. It wasn't like every school had it. He started in early elementary one school, then for middle school had to go to a completely different part of the district and high school a completely different part. It was just a totally different time. What's funny about it is now, when you're talking about autism, you say the word autism, everybody knows what you're talking about. You would never even think like, oh, I have to explain what that is. They may not know a lot about it, or how to handle it or what best practices are, but they know what it is. When I was growing up, people didn't know what it was. For instance, going back to talking about the different schools. I remember, when I was in junior high, one of my classmates asked me, she said, "Why does your brother not go to school here?" I said, "Well, he's autistic." She said, "Well, you're artistic. Why do you go to school here?" She had never heard the word before. She just assumed I had said he was good at art. Like if you're good at painting, he went to a special school. I said, "No, he has autism. " She's like, "What's that?" That's what it was like. I mean, there weren't just no resources, there was no education on it. There was no acceptance, no awareness at all. It made it really difficult when you went out, and he acted differently because people had no understanding what they were looking at. Here's another example. This is probably the worst that ever happened as far as the unawareness. I remember we used to go on vacations, which were always extraordinarily difficult because my brother needs routine. Some people out there may understand this, others won't. Some people with autism will only use the bathroom in certain places, or they don't feel the same level of pain as other people, so they'll go all day. Going on vacation was a nightmare to begin with. It's a different routine. It's a different bathroom. It's highly stressful. If you have someone with autism, sometimes not for everyone, but for my brother, that was already heightened stress. We were on vacation one time and he got upset and had a screaming fit, because he had a lot of meltdowns when he got overwhelmed. The manager called my dad into the office and said we were being kicked out of the motel and that we were lucky he didn't call the police because obviously my parents were beating him from the sounds of the screams. My dad's trying to explain "No, he has autism. No one is beating him. He's out of his routine." Since no one had any awareness, we were sent packing and told we were lucky to be not going to jail. I was young when that happened and that made me feel a little bit afraid of the world, as in knowing that people didn't understand. When I say it was a different world back than it is today it is radically different. It was very difficult.
Carrie M Holt 10:16
I know we have listeners who have children with hidden disabilities, that have Reactive Attachment, and they have behavioral things going on. I think for them, it's still a little bit like that. It just doesn't feel like a safe place. That happens even with our son. A couple of months ago, we go to a doctor's appointment, and the snow was literally covering the entire sidewalk to the front door. The space in front of their front door was open, but there was a two-inch curb, and the wheelchair-accessible path was blocked. I just remember feeling like, oh, I hate going out in the world, because I always am having to fight or nothing feels easy. I think you can relate to that. And I think our listeners can relate to that. I know, eventually, you grow up and you start a church ministry. What do you think is important for churches and families and those who are serving in our churches to know about behavioral disabilities? Sometimes the world still, even now we've come a long way, but there are times when it's still just not a safe place for families of children who have different needs.
Barb Stanley 11:48
Well, I'd say, for one thing for families who have children who have behavioral differences, and especially those who may have some aggression, or could melt down like my brother used to when he was younger. They're living with a lot of stress every day. It's kind of like a low level trauma. You never know exactly what to expect. So there's, really an opportunity there for churches and for people to really love on those people, and bring them in. Any little kindness or acceptance you give them is huge in their lives. I think one thing for churches to know, is when we talk about being the hands and feet of Jesus and living out the gospel, this is what the gospel looks like. It looks like here's someone who really needs to feel that love, really needs to feel that acceptance. Is it going to be easy? Maybe, maybe not? Is it going to take a little bit more effort, and are you going to have to learn some things? Yes. But that's what being a Christ-follower is about. This is your opportunity to show the love of Christ by making the effort.
Carrie M Holt 12:55
Yeah, that's so good. I feel like one of the things that I love about your ministry is that the videos that you have created, they're not just for the workers who are just in special needs ministry, they are for the whole church. They're for all the children's workers. Can you tell me a little bit about that? Why you felt that was part of your passion, and, how that came about?
Barb Stanley 13:29
Yeah, so our videos are like five, six-minute training videos. We try to make them funny or heartfelt. We've tried to make them accessible to all of the volunteers, not just the staff members, not just special needs ministry people because we want the entire church to be inclusive. We don't want what I grew up with, where people don't recognize it, and they don't know how to handle it. We want to equip people to be part of the world and invite everyone else and be part of their world too. If you want to be an inclusive church, you can't really silo that into one little tiny ministry, it's for everyone.
Carrie M Holt 14:13
I love that so much. I've worked in children's ministry for a long time, and I still do at our church. There are just days even when visitors will come and they show up, and they might not have an official diagnosis, or the parent doesn't communicate that well. Maybe they don't even know or they're just kind of seeing. They don't want to put a label on their child so they're not going to educate upfront about their child. There are days that I've even had experiences where I'm kind of at a loss of what to do and I have a son with special needs. But each one is so unique and different. I really want to put a plug in here for our listeners because the ministry that Barb has is for all the workers. If your church, even if it doesn't have a special needs ministry, but you have a short meeting before church to get everybody on the same page, use these videos because this is what everyone needs. We are all a part of the body of Christ, like you said, we all need to be inclusive and be educated about how to help these kids and in the varying needs that they have. that takes time, and effort and things like that. One of the things on your website at wonderfulworks.net, and we'll give that link in the show notes was about compassion fatigue in ministry. Can you tell us a little bit about what that is and what you feel like we need to do about it?
Barb Stanley 15:58
Yeah, so compassion fatigue is something that happens to people who work in the helping fields, which includes ministry. What that means is, that you're someone who hears a lot of trauma from other people, or you're trying to care for people who are experiencing trauma. Once you get so much of that vicarious trauma, it can wear you down. One of the major symptoms of that is that you start losing your compassion for other people like I can't even feel compassionate anymore. That's a sign that you're getting it. If you keep ignoring it, and you keep going without doing anything, then it can kind of lead to depression, it can lead to burnout. It's one of the reasons why people burn out in ministry because they just emotionally can't handle it anymore. When I was in grad school, which is just like two years ago, I did my capstone project on compassion fatigue, and help develop a little intervention we did at my internship, which was at a counseling office. What I learned through that project was there are four things that researchers have found that help with compassion fatigue. They are: connecting to your mission, feeling valued by your colleagues, feeling equipped that you can do it, and self-care. If you take those four things, and you put them into your life on a daily basis, like developing healthy habits, you will help prevent compassion fatigue, or when you do experience it, you will be able to get out of it more quickly. I think these four things are very similar to compassion fatigue in caregiving. So our first intervention, we created these worksheets called the Four Points Worksheets that you could do once a week. What they do is they ask you questions that prompt these reflections and prompt these actions. What we found in my project was the one that the people said was the most effective out of all of them was number one, connecting to your mission. Whether you're a caregiver or whether you're a ministry leader is to stop and intentionally remind yourself, why what you do matters, and what impact has it had. I know, when we spoke before, Carrie, you talked about gratefulness, and learning to be intentional about gratefulness. Well, this is really the same thing. This is saying that I know today feels hard, and to be honest, if I didn't have to do this again, today, I would take a break from it, but I can't. Then just stopping and reminding yourself of something good that happened. In ministry, picture the face of someone that you have helped. It is developing those habits, and it's really empowering and uplifting. All four of them are important. I mean, the second one is about feeling valued by colleagues. For caregivers that would be making sure you have support and your relationships. That's really about support and feeling equipped is just so that you feel like you have the resources you need to do the job well. I wanted to talk about self care for a minute, because I think this looks different for caregivers. A lot of times I think people get self-care guilt and they feel like well, I don't have a day to go to the spa. No, that's not realistic. What I like to think for self care is changing your perspective on it. I call it having little bits of joy. So throughout your day, just do something small that's joyful. Maybe it's wearing your favorite color. You can't see me, but I'm wearing like a pink shirt with ruffles because that makes me feel happy. It's having your favorite cup of coffee or whatever. Incorporate these little things and when you have them stop and really enjoy them
Carrie M Holt 19:57
There is a lot of guilt around self-care. We have elevated it to where it has to be big. It's got to be an entire day at the spa. It doesn't, right?
Barb Stanley 20:12
I want to say that self-care, I personally think it's both. I think some of that depends on your personality. So like, I'm not a practical task-oriented person. I know that self-care, part of self-care is saying, like, every Friday I'm going to get the laundry done because then I'll be less stressed. That is self-care. Yes, that's not going to do it for me. I would be the person that would also need the cappuccino. I think it is understanding what feeds you, and understanding that that does not have to be big. If something else feeds someone else, you don't need to feel guilty, if that's not your thing.
Carrie M Holt 20:48
Yeah, no, that's true. That's very true. So is there a place where we can find out more about these four points of compassion fatigue?
Barb Stanley 21:01
Well, you can go to our website, and you can actually download our worksheets if you'd like to. If you really want some good reading, I have a 30-page report that I can send you.
Carrie M Holt 21:14
We can put a link in the show notes to that because I think those four things are just really important for those who are serving in ministry, and those who are caring for their kids. When we're doing both, then it is really hard because especially I think we you know, some people are very much wired for caregiving. Right? For me, one of the struggles I've been dealing with lately is. I feel like I have to take care of everybody and everything, even people outside of my own family. There's so much fatigue that comes. You have to set some healthy boundaries, I think sometimes. I don't know if you have anything else you'd like to expand on related to compassion fatigue,
Barb Stanley 22:10
I think it's just really important for everyone to understand what it is so that you can understand what the signs of it are because that's when you really need to start taking better care of yourself. If you wait till too late, then it can really damage your mental health and your life.
Carrie M Holt 22:28
I think you gave some really clear definitions of what that is, because you're right if we wait too long, our bodies and our health is affected too. I struggle with adrenal fatigue, and it's from always being in those adrenaline fight or flight situations. S
Barb Stanley 22:50
Then I would say this too, on the self-care piece for caregivers. As a sibling, the thing that is the most, the biggest thing you can do as a parent, if you want to take care of your typically developing children is taking care of yourself. 100%. I mean, yes, you want to spend time with everyone, and sometimes you can't have equal amounts of time with everyone. You can't control all that stuff. That's okay. But take care of yourself because when you let the compassion fatigue go too long, or you get too heavy, your children will feel it too. Then they will feel responsible for caring for you. That can be really hard for kids because they're not equipped to do it. So taking care of yourself and paying attention to your own needs and feeding your own needs, is not selfish. It is the most caring thing you can do for your whole family.
Carrie M Holt 23:47
Yeah, I think that's so good. I love that you said that. Going back to your ministry, Wonderful Works Ministry, what is one of the common misconceptions that people have about ministry in the church around special needs?
Barb Stanley 24:02
Well, I think a lot of times when I tell people what I do and that I work in disability ministry, the first thing they say is that's so great that you are helping kids with disabilities know Christ. That's true. That is part of what we do, and that's really important. But it's only a small part of what disability ministry is about. In disability ministry, when you're able to serve a child who has a disability like autism, you are serving their entire family. It's not just about the student. It's about the parents, the siblings. They're getting to come and learn about Christ. It's about the people that they invite to church or they tell about Jesus and those people's families and those people's friends. It's about, the children that the siblings will have and their grandchildren. When you allow one student with a disability into your church because you have learned how to serve them. You are impacting the kingdom in infinite ways you can't even imagine. Just to put a personal face on it. When I was growing up the one place where my brother never had a meltdown was church. Now, that is really unusual. I have to believe now that that was just because God had this plan in mind because he got overwhelmed in a lot of places. He never got overwhelmed at church. So we were able to come. Even though I did not become a Christ-follower till I was an adult, when I was growing up in that church, the seeds were planted in me. Now, if we had not been able to come. If the church hadn't made it accessible, you and I would not be having this conversation right now. All the people that go to our church that have disabilities in their families probably wouldn't be there. I may not even be going to heaven when I die. My kids wouldn't know Christ, their future children wouldn't know Christ. It's not just about one student. It is about the Kingdom of God.
Carrie M Holt 26:10
Wow, that is just so powerful. I think too. What about those who are serving them? What are they learning? What are they telling you about the ones who are serving?
Barb Stanley 26:28
If it makes your church better, it is a blessing to the people who are serving. We've actually had a couple of people in our ministry who serve who've gone back to school to become professionals. That's how much they love it. I mean it makes you better. Just another thing I would say. This is the other misconception, I just think about disability in general. If you're not part of a family affected by disability, then a lot of times when you see a person with a disability, you may see their disability, and you think of them in terms of the disability. That's not the way it is people with disabilities are people. They have personalities, and they're funny, and they're unique. When you serve with these people, you're making friends. You're getting relationships that are meaningful to you. I think when churches or people say I don't understand someone, so I'm going to stay away, you are denying yourself something beautiful. I think about all of the people that I've known who have disabilities throughout my life. I think if I had never had that opportunity to really have those people really my life, that would be a tragedy because they're just great people, individuals. It's a blessing for those who serve, and it makes your church just better. It just makes it better.
Carrie M Holt 27:53
Right? Because when you see Jesus in the New Testament, he was going to the people who were marginalized, and who were the tax collectors and the sinner. The women and the children in that society were marginalized. I love what you said about the kingdom, and the generational kingdom impact. I think also, as parents of children with special needs, we are also planting those seeds. I think we have to remember when you were talking about the number one thing to remember with compassion fatigue is our mission. That is our mission as parents, right, is that we are blessing future generations to have a kingdom impact for our children with special needs and if we have children that do not have special needs. I think that is just so important. What if somebody wants to start a special needs ministry, or they're in a really small church and they just have one child in their church? Do you have a place for them to start? Do you have some recommended resources through your website and things like that, that you can give them?
Barb Stanley 29:12
I would recommend that they can go to our website at wonderfulworks.net. They can fill out the consulting portion. We can start by having a conversation and go from there. There are other great ministries that help with that too. Key Ministries, SOAR, Ability Ministry. There are ministries out there wanting and waiting to help. Reach out to us and we'll get you started. If you're interested in learning more about what we do or you think this would be beneficial to your church, go to our website, wonderfulworks.net. Ask to join our Facebook group where we have all of our resources for free and start sharing these resources with people because the more people who know, the more inclusive world this is going to be.
Carrie M Holt 29:59
Definitely. Well thank you so much, Barb, for being a guest today on Take Heart, and I'm so grateful. What you've shared today has just been very impactful for me, and I know it will be for our listeners too.
Barb Stanley 30:12
Thank you so much for having me.
Carrie M Holt 30:32
Thank you so much for joining us this week on Take Heart. Our prayer each week is for your heart to be encouraged. We are grateful you are walking on the journey with us. Be sure to subscribe to our newsletter and follow us on Instagram and Facebook at takeheartspecialmoms.com. If you have any questions or comments, please follow the links in our show notes. We love hearing from our listeners and tune in next week as Amy interviews another special guest.