Video Transcript: When You Discover Differences

Already up to week three. Welcome back to this Creating Congregations of Belonging with People of all abilities course. Wow, we have had an introductory start. And now I'm just delighted to spend this week thinking about different aspects of that perspective. I know we talked a lot about Puzzle Piece Perspective, but I wanted to share with you this week, three different pieces of that. 

The first part that we're going to talk about has to do with when people actually discover that there are some differences involved with a child, sometimes with an adult. And I think that it impacts a lot of our response as a congregation. So really wanted to spend some time thinking about that puzzle piece perspective, but applied to, okay, when are we finding out about this difference. So that will make more sense as we talk. 

Another section I want to cover today, and one that is really, I give a lot of credit to colleagues of mine that are doing some research on what does this word disability and worshiping with people of all abilities mean when you live in a in a completely different culture, or when you're part of a congregation where there are several different cultures represented, each of them with a different perspective. And so, I will give you a little, bit a taste of information, and a promise that we are studying this as part of all belong and part of the connection that we have with the Calvin Institute of Christian worship. This is important information and it doesn't exist at much at all within the context of church and in that word disability. So I want to talk about that. 

And then also want to just leave you with another perspective of how we can use that puzzle piece perspective to change our vision as we look at an individual and I'm hoping that that is one of those sessions at the end of this week that you can just sit back and experience God speaking through that presentation that we're going to have in in the third part of this video of this week. So let's begin by thinking about to this first session about when people might discover some differences. 

So, again, I think there are there are so many questions, especially as they surround children. One of the roles that I play at Zealand Christian School, is to work with those children who are 3, 4, 5, and 6. And this is, oh, these are these are just such critical questions that we ask all the time. Parents send children to school and they may never have even thought that their child was wired any differently, or might need some special support or accommodations to be successful in school. 

You know, one of the questions that we ask, so here's a roomful of three year olds, is it typical, the behavior or the what we're seeing? Does every three-year-old have words to say? Or if they say no words at the age of three, is that okay? I mean, you're always asking that question. You know, will more time help? Do we need to do anything? Should we say anything? Would it just having different tools brought in for the whole group, is that enough? If we just give this child extra time, will that be the magical ticket to allow this child to more easily function within school and/or congregational setting? 

Where are the parents in all of this? Are they asking any questions? Have they been a helper in the Sunday school class? And they're saying, oh, I guess the other children aren't doing what my child is doing? Everybody else is sitting on the floor and mine is racing around the circle 62 times before they even consider setting. I mean, are the parents asking questions, or are they not? Do they seem like they would be open to a conversation, and if they do, like, how are you going to have that conversation? Who's going to have that conversation? You know, and if they already came in and you know something about it, think another question that we ask is when did you find out that there was a difference? 

And I think as I've been working with congregations, that last question, while we'll address some of the other ones throughout our time together, that last question of when did you find out, has some direct connection with how, the way congregations operate. So let's talk about that. 

One option in this area is that we might have found out that there was some kind of difference with a child before that child was born. They did tests, or something happened and it necessitated a treatment or an observation of some sort but they could tell that there was going to be a difference before that child was born. Maybe the parents had genetic counseling, and they were assured 100% of your children will have…, so that they knew about this in advance. I don't know. That was true for Logan. 

Logan was born with something called spinal bifida. Amazing with Logan, they not only knew before birth, they did as like a surgical procedure with Logon before he was even born. And so that, I think, is one time when parents might find out that they're going to have a child who will have some sort of a difference. Interesting, too, I think when you get that information before birth, there's a process, you have some time, there's some time to think about it. This isn't just something that happens in the delivery room, it's not a surprise, you have some time to process this. And in so they could do some reading about it, they could do some learning about it. They were prepared for Logan having Spinal Bifida on the day of delivery. So again, some parents and individuals, they'll find out before that child is born. 

And another time that you can find out, this isn't rocket science but sometimes, you get that information at birth. Something happens as part of the birthing process. Or it's something that that they didn't see before in other testing and so it's the date of delivery, and then it's at that day that they find out, oh well, this child has, you know, eight, you know instead of a 10 fingers, there's eight, or, it was true for Becky. 

Becky was born and she happened to have cerebral palsy. The cord was wrapped around her neck and so when Becky joined her parents, she had a lack of oxygen to certain parts of her brain. They didn't know all the pieces of cerebral palsy, but they also didn't know before she was born. So it just happened at that time at that point in labor and delivery. 

I was telling you a little bit about Adam story. That was, Adam was born and it was a complete surprise that Adam had Down syndrome because they didn't have any other screens or tests. It just happened. So Adams parents, you know, the story I was telling where the doctor who referred to Adam as an ‘it’, and don't take ‘it’ home, and the like. 

So, there are many times when parents will find out. They do a test - that Apgar score is low - there's a crisis; there's a situation. But sometimes parents get that information at birth. And wow, is that a different story for those parents than if they knew about that before the child was born, right? So there they are, they're already going through labor and delivery. They have this expectation. They're tired; they're sore. And then here we go. Here's this bombshell that's sometimes dropped out of family. And so at birth, information at birth, can happen. 

But there's another time that you can find out and that would be information after birth. Oh, in fact, it could be soon after birth, it could be several years after birth, it could happen as part of a school evaluation when a child's learning isn't happening at the same rate. It could be because of an accident. We had a student within our community who was in a very serious car accident and now has a brain injury, and now becomes a person who will need some very specific supports who never needed those supports before. Sometimes, in fact, young adulthood is a very common time to be diagnosed with a mental illness. So many individuals have information that they get after birth, and it could be a short time after birth, it could be a very long time after birth. 

But this was true for Caden.  Caden happens to be born with autism. And again, autism, ADHD, or attention deficit disorder, it's not as though the doctor looks at that couple after they've given birth and says, oh, by the way, your child has autism. No. These children are already part of your children's ministry and youth ministry. They're already there. You may have suspected that there was an issue or a difference with a particular individual, but they're already part of your group. That person who's developing an area of disability, or perhaps had a stroke as an adult, again, they're part of your community. They're already there. 

And I think that that, too, has some very specific ramifications. In fact, I think each one of these times when people find out, has a different congregational reaction. So I want to talk about that. In a minute, how is the congregation reacting to the three different seasons of when you might discover that there is an individual who has some sort of a disability. 

So if we think about that, if you get information before birth: Logan's congregation, they dove right in with the parents. They wanted to learn about it. They had an educator come in to talk about spinal bifida before Logan was ever born. They had books that they had gotten in. They put an article in their newsletter. This church was prepared. And in fact, they had a response team lined up. They were ready to come in beside parents with meals, they were ready to come in with care for the siblings. They were organized. They had their act together because they had time to process this. So while they didn't know all of the pieces about Logan's life, the extent of what he would need as part of spinal bifida, they did have a plan. So just as parents could plan for that, the congregation could as well. And I think that that's a really great opportunity often for communities to be ready to be learners along with those parents, so parents don't feel so isolated. They don't feel like they have to do this on their own. But they are part of the process of learning and getting ready to receive the gifts and the challenges that Logan will bring to that family and to that community. 

So again, pretty wonderful opportunity at times when a church can prepare along with parents and family, for that individual. But I think also, it doesn't always go that way, right? We talked about there are situations when that information comes to you at the birth. So you've got the family, labor, delivery, and now there's a child with a disability.

I had a friend who actually interviewed many parents who were in this situation to find out what's helpful for you. What would you have liked? Or what do you like? Many of the parents said, oh, my goodness, when this happens, you're just inundated with emotions and information. And so you're trying to understand it all while also trying to navigate all of these specialists, and many times that are giving you information, and the people from this association visit you and you've got phone numbers, and it just is really hard. And I think of the summary of what she learned from, I think it was 104 parents that she interviewed. 

One of the key points was, make sure there's a lead point person from church, not a ton of people that already is in relationship with this person. So if they're connected with a specific adult leader, even though there may be a person set up who is there to help facilitate the shredded cheese portion of their church, they may not have relationship with that person. This is not a good time to introduce a new person. Is there a person already in relationship that can do the visit that can be part of this process with them that's familiar to the parents? The other thing that they said was please, it doesn't help to have that many people visit us? Could you send us a text, an email, a card? 

Now my encouragement at this point is not to do what Addams family experienced. They got cards. Several of them were sympathy cards. So remember, when you communicate, to communicate through that puzzle piece lens with the parents. I wouldn't send them ‘oh, I'm so excited, da da da’. And not that but to just say, ‘I know you named him Joey and I'm excited to meet him. Praying for all of you.’  Right? So again, how can you, how can you cast that vision while still coming alongside parents who are in the grieving process most likely, and overwhelmed? Text, cards, and also parents said, please do not ask us what can I do for you. Just tell them - I'm coming to pick up your laundry; have it on the porch. I'm going to do it on Tuesday and I'll have it back to you Tuesday night. 

I'm bringing you a meal on Wednesday. I'll put it in my cooler on, you know, your back deck. Enjoy. The dishes are disposable; dump them when you're done. I'll pick up my cooler on the weekend. Whatever.  Say what you're going to do, and to give help just declare it because as they would all say, we can't even think; we don't even know what we need. So to have some people come along and just do that. 

So on the side, I think the church can get organized. But it probably is not going to involve a lot of parent input at that point. It's like how are we going to provide support and care? Who's our key contact? Are there a couple of people who would be some meal providers? Are there a couple of people you know, that could be involved that are that they would be comfortable doing their laundry? You know, those kinds of things. So, could we get our team organized at church while also giving, blessing the parents with brief contact, encouragement, but that one person that sort of taking lead from the church until such a time as it makes sense to transition to someone else. So that's what again, some interviewed parents would say, and I think I would find that consistent with what I've heard from parents as well.

And then I find this one to be really interesting, too. When you get that information after birth.  Again, for many years the parents may have thought we have a very typical child in our home. For many years, they may have looked at a couple of things and thought okay, I don't know about that. They might have been raising questions along the way, but this was not on their radar. I have to tell you, this is the bulk of my job at Zeeland Christian at this point, is walking that journey with those parents, recognizing that they may not have even thought about this. And yet, when my eyes have seen so many children at that age, at this point, it's fairly clear to me that that child will need some assessment and support in order to be successful in that school environment. How do we walk that journey with parents? 

So I think, again, every season has its own time. And in some cases, we've done some damage that we have to control. In some cases, they've heard the comments of the people sitting behind them in the pew that said, Well, if those parents were just better parents, right? In some cases, they had comments made to them that have been damaging and hurtful, and they're not even sure that their child is going to be welcomed there. Why would we even disclose that there's something going on with our child, if there is?  So again, information after birth can be confusing. And sometimes there's already been, I'll just call it damage control, because of comments and situations. 

But sometimes, to be honest, the first people that notice that there's a difference might be your experts in child development called those people who have worked in your nursery or care centers for 30 years. They know that when a child is not yet talking at that age, something needs to be checked out. And sometimes this is the first time parents have heard that information. And quite honestly, if you know that there is a hearing difference with a child, oh, boy, is that important information to give to parents as soon as possible, because hearing, if it can be remediated with surgeries, tubes, hearing aids, devices, whatever, now becomes the platform for further development and growth

Sometimes church nurseries are the first place where people have sort of other eyes that are informed on a child. So I've done a lot of work with congregations to try to equip those early childhood nursery workers with that information, and in the new book that's coming out in the fall of 2020 actually address that issue in a particular section for infants and toddlers.  We need to equip our communities to be able to know when to talk, how to talk, how to come alongside parents and children. 

But again, as I mentioned before, that information may come way later in life when there's a stroke or when there's a significant hearing loss that happens due to aging. Whatever that situation might be, we as a church, again, as we come alongside individuals at different ages, to be willing to remind people of who they are, that there is a place of belonging, that that belonging was not at all hinged on their abilities, or what they were able to do, but that belonging is a gift from God because you're part of this community. 

So we're going to talk specifically to that in section three of this week. But again, entice you to think about that a little bit; congregational response at each level of the journey, and how that can be different from age group to age group. And when you find out that that child or individual, that adult, has an area of difference at this point. 

So I want to encourage you again, more information to gather, more ways to think about how can congregations come alongside situations at different points of time in that discovery of disability, varied abilities, whatever that may be. So the next section that we're going to cover in a little bit, we'll be talking about that important thing that we're learning more about cultural context and perspective.