Embracing the Silent Struggles Within Faith Communities

When the unspoken burdens of the heart find their voice, healing begins. On Indispensable People, I, Tracie Corll, unravel the emotional tapestry woven by families of individuals with disabilities, revealing patterns of grief, denial, and ultimately, hope. In an intimate conversation with my son, we expose the raw edges of emotional well-being shaped by disability, both for the individuals and those who love them. This episode pierces through the silence, offering a beacon for churches seeking to understand and uplift these resilient families.

Navigating the complex dynamics within such families, we spotlight the significance of sibling connections that exemplify inclusivity at its finest. Through my own reflections on disability ministry, we recognize the undervalued need for empathetic listening and guidance toward a hopeful future within God's grand design. Listen as we discuss how every voice, particularly those often unheard, enriches the tapestry of ministry leadership and spiritual fellowship, fostering inclusive growth and a sense of belonging for every soul, irrespective of ability.

Transcript

Speaker 1: 0:03

Hi, my name is Tracy Corral and welcome to Indispensable People. I'm a wife, mom, teacher, pastor and missionary, and I believe that every person should have the opportunity to know Christ, grow in Him and serve Him with the gifts that he has given, no matter their ability. Over 65 million Americans have a disability. That's 25% of the population. However, over 80% of them are not inside the walls of our church. Let's dive into those hard topics biblical foundations, perceptions and world-changing ideas. Hey, hey, welcome to this episode of Indispensable People. I am so glad that you have joined and I am ready to share with you today some thoughts from my son On the way to work today, I was asking him. I said listen, buddy, I'm working on the podcast and I want to know some things from you. And he was like all excited, ready to share, and I said what are some things that you think that we should be talking about? And it was strange, but also not so strange because it's been a conversation in our house as a family about the mental health, and I'm not going to talk about mental health in the way that you might be thinking. Mental health, I'm not talking diagnosis, I'm not talking chemical imbalances, prayer versus healing versus medicine, all of that kind of stuff. Listen, the prayer can do wonderful things. God has a plan and a purpose, but also, medicine exists and can be used and there are certain diagnoses and things that can be helped by medicine and should be. So I'm not actually talking on that side, but I'm actually talking on the impact of disability on the family and how the church can interact with it.

Speaker 1: 2:25

On my last podcast we talked a little bit about hope and hopelessness and we're going to kind of develop that a little bit further in this podcast as we discuss that. I am going to share with you it's. Actually I found an article online that talked about the emotional experience of families of children with disabilities. But first I want to help you to understand this from my perspective as a mom and a little bit of my son's, as he has different diagnoses that have impacted the way he looks and deals and thinks about life, and again, that's why I said it was a strange thing that he brought up, because not a lot of times are people willing to have those kinds of conversations, but also it has been a bit of a conversation in our house. So when we talk about the mental impact or the emotional impact. I want you to think from a family standpoint, but also the individual with a disability.

Speaker 1: 3:45

So I was reading a blog post last week from Ellen Stumbo and she talked about one of the issues with disability ministry is that many of its leaders are not those with disabilities. Now listen, not everyone with a disability is equipped to be a leader, just like everyone without a disability is not equipped to lead a ministry. So there are individuals that are called and that are meant to lead, and disability shouldn't be a barrier to that if that is their calling and that is their ability, skill set, ability, skill set. However, I do also think that even if someone is not able to lead, that they still have opinions and they still have very valuable pieces of information that can impact and propel our disability ministries forward, which again, is why I had this conversation with my son, and so I think that he has valuable information that can benefit the church as a whole and the listeners as a whole. So when he said about, he was talking about different things that impact people's lives and how that changes the way they think or react or deal with certain things, and how that changes the way they think or react or deal with certain things, and we know that disability is a huge piece that impacts someone's outlook or approach to life, and so the current article that I wanted to share with you that I just mentioned was the emotional experience of families of children with disabilities.

Speaker 1: 5:23

You have all kinds of reaction, right. You have children who are born with disabilities. You have children who are diagnosed a few years later. We've talked about before where autism the typical diagnosis is around the age of two and thereafter. I know of full adults who maybe never realized that autism was a diagnosis, that now it is for them, and you will get a couple of different emotional reactions, right. There are some people who I would say fewer people who just accept it, it is what it is and this is where we are and so we're going to move on. And then you have others who have big emotions, and rightfully so. That might include things like grief, sorrow, and this article listed the stages of grief that families of children with disabilities typically experience, and it says that there are really no exact orders to how these emotions kind of come up. I mean, that's kind of the definitions of emotions, right.

Speaker 1: 6:38

The definition of emotions is that they are sporadic sometimes, which means that at times they're surprising that someone could say something and you know a second later like it triggers a thought or an emotion that maybe you thought you were good or had moved past. And one of those stages is denial, and in this it means that they may not believe where they are, and I have actually come across this quite a lot. There will be parents who will come and they will say something, to the extent you know, when they're checking their kid in on a Sunday morning, that you know they like this, or they like this, or they don't, they don't do well with this, they don't do well with this and or you know, may not even say anything at all, but they do not allude to a diagnosis or you know something specific that we should be in consideration of when their kids are with us. And there are people who will just say well, they're growing. You know everybody. You know everybody has their quirks. There are all kinds of different things that that people will say and sometimes that will stop parents from going to the doctor figuring things out.

Speaker 1: 8:06

I had an experience a week ago where someone shared with me that a family had three kiddos. Two of them were diagnosed with autism and the third one had not been diagnosed. But this person who had interacted with this family very much thinks so. But because the autism doesn't look the same in one as the other, or whatever it might be, that parent has not taken the steps to do something for that child. And I think it goes beyond so much more than the attributes or symptoms or things that they're seeing or not seeing that are located with autism. But maybe because they're not exactly the same, they're holding out hope that this isn't the path that they're going to take with their third child. So there are lots of different experiences that come along with that.

Speaker 1: 9:04

Another is guilt and somehow, some way, people are trying to take responsibility for their current place, how their kids got to be where they are. I know I've shared the story of my husband and our son's diagnosis and he would not admit to it and finally, when he did concede, he said something to the effect of if it's true, if it's real, then it's my fault. But, as I have tried to remind him and others that, although they wish that they were that powerful and have that much control, that is not the case and God is our decider and our definer not the case. And God is our decider and our definer and he creates people with a plan and a purpose for their life, and that is the decision maker. Now we need to be careful with that, because, although God is sovereign and there is nothing that passes through his hands that is not his choice, we need to remember that we live in a fallen world and, although God had intended perfection, that that is not possible. But God uses everything for his good and to glorify and so that other people may know him, and so there's a purpose in the pain.

Speaker 1: 10:34

The next step or emotion that individuals may experience are anger. They may feel like why does this happen to me? Why? You know? What did it? What's this, what's that? And they don't know how to take steps forward. And they're thinking about the life that they had intended to live, the hopes that they had for their child's future, and they're just angry about it. And that's a process, that's a step through and a place to admit those feelings and have the opportunity to discuss those.

Speaker 1: 11:13

And another emotion or experience may be depression. There is actually evidence that would suggest this article says that mothers of children with developmental disabilities are at an increased risk for depressive symptoms due to the stress of parenting compared to those of children without disability. There's actually a lot less research on fathers, but some evidence suggests that those with children with disabilities also increase the risk of depression, and so another emotion that we could talk about is anxiety, and there are so many things to worry about when you have a child with a disability. It's maybe it's their current medical stability that is the concern going to keep up with all the needs that exist. How do I take care of my other children? Will we have time for our marriage? How will we do this? How will that take care of? What will people think of my child? What will people think of my family? What will the future be like? Will I be the one to care for or take care of? These are all feelings that are valid questions, and many of them I have asked myself, not knowing what the future for my son will look like.

Speaker 1: 12:44

Another fear or emotion that people are going to experience is bargaining. So I'm going to use what is stated in this particular article, because I think it describes it well. It says this stage of magical thinking, and this is the stage of magical thinking and unrealistic expectations. It says, primary caregivers may think that if they work hard enough to help their child, they will be rewarded by having their child cured, or that symptoms of their child's disability will go away or be cured. This is a hard place to be at, because if I push myself hard enough, if I go to enough therapies, if I do enough when they're at home, if I give them this, that and the other, then things will be better, that you can protect them, that their future won't be as difficult as maybe had been anticipated.

Speaker 1: 13:53

Another emotion is fear. Fear, I think, goes a lot with anxiety, but it goes steps further. It is kiddos with medical needs. That what if they stop breathing? What if I don't get to them fast enough? How could I leave them with someone else who doesn't understand all their needs? What if, what if? What if, what if? And that fear can be paralyzing, paralyzing to the choices that a family makes. Further on, we need to consider that siblings will be impacted, not just the primary caregivers moms, dads, grandmas, grandpas those individuals but siblings also will live a very different life because of the individual with a disability, and a lot of times they take on caregiving roles and some of them aren't even asked upon by their parents.

Speaker 1: 14:53

So I will give you an example, and I may have shared this in one of the past episodes, but when Noah was younger, when my son was younger, he had seizures and he would lose bladder control. Now my youngest, emma, is two and a half years younger than Noah, and so probably at this point I'm gonna say Noah was, I don't know, maybe seven, maybe eight, and I was doing some. I don't know if I was cooking dinner or what I was doing, but I was doing something where I was busy and Noah had had a seizure and he had lost bladder control. And my daughter came into the room and she was like hey, mom, noah had a seizure. There's stuff on the floor, I'm going to clean it up. She was probably five, she's five, and she knew what it was, she knew the procedure, she knew how to clean it up, she knew how to take care of it. I did not ask that of her. I don't think I had ever asked that of her. We have always been open with our kids and letting them know what's going on, and we didn't want to live in fear of what was happening, and so we would share about those things and I would tell her what I was doing when I was doing it. But she took it upon herself to just take care of the situation, and that's not something I ever asked of her to do. But I also had to be careful that, even though she was willing to take on those roles, that I needed to somewhat protect her from some of that because I didn't want her to carry the weight of that responsibility.

Speaker 1: 16:42

I think that siblings who have a brother or sister with a disability there's so much to learn. There's so much richness in that relationship. There is so much kindness and compassion, there's so much inclusive. I've always said if you want to know how to treat someone with a disability, look at their sibling. Not because they always give them grace and kindness and whatever, but they're usually not walking alongside them, pitying them and shoving them to the side. Their sibling is just their sibling and that's a normal piece of their life, and so it's usually a good model on how to build a relationship with someone without the focus being on their disability, someone without the focus being on their disability.

Speaker 1: 17:31

So why do we talk about all of this? Why do we talk about families? Why do we talk about their caregivers. Why do we open doors to understanding what they might be walking through? And here's the bottom line when we serve individuals with disabilities, we don't just serve that individual, we also serve their family. As the church, we need to be in support of them, their needs, what they're going through. We need to validate those feelings and we need to direct them to God. And sometimes we just need to shut up and listen, because I know many of you have probably sat in a conversation where you're like listen, I don't need you to solve the world's problems, I don't need you to tell me what or how to do, I just need someone to listen, I just need to get out what I'm going through. And this is incredibly important as we support these families, as we work to understand what they're dealing with, as we come alongside them and offer them the hope that Jesus has Because, listen, we don't use the scriptures to diminish their difficulty, right?

Speaker 1: 18:44

We don't say to them well, god created them, he defines them, he loves them, he had a plan for them. We don't say that all to say, your life isn't hard. We say that all to say is that I know your life is hard, but it is not without purpose. It is not without purpose. God does not waste a single thing. He does not make mistakes. He has a plan and a purpose for the life that he has given you, and it is your choice what to do with it.

Speaker 1: 19:15

So all of those feelings and all of those emotions that we've described today, listen, people are going to have them, people are going to feel them, and it does not make them less of a person to experience it or have it, but, just like any other emotion that people walk through, it's what we choose to do with it that makes the difference, and the church can be the key to helping people understand their place, their purpose, provide for their needs and give them hope for what God has for the future. Do I know everything about disability ministry? Do I have all the answers? Have I done everything perfectly? I've absolutely not, but we are going to continue this conversation so that people of all abilities can have the opportunity to know Christ, grow in Him and serve Him with the gifts that he has given them. Thank you.