Welcome back here segment two of week three. I want to introduce you again to Barb and listen to her, because she's going to talk about when you learn about a difference, or when you discover differences, and so keeping in mind that  cultural context that I kind of built up for us in this last segment, and then  thinking about when you discover the difference as an individual. So watch  Barb's video from the previous version of this course, and enjoy what she brings to this discussion. 

Barb - “I think there are, there are so many questions, especially as they  surround children. One of the roles that I play at Zeeland 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  room full 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? 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'll even consider sitting. 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, and if they already came in and you know something about it, 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, 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 Spina Bifida. Amazing. With  Logan, they not only knew before birth, they did a like a surgical procedure with  Logan 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 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 and so they could do some reading  about it. They could do some learning about it. They were prepared for Logan  having Spina 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 10 fingers and 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. 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's  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 Adam's parents, you know the story I was telling, where the  doctor 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, here's this bombshell that's sometimes 

dropped on a family and so at birth, information at birth can happen. 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 is true for Caden. Whoops.  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 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 Spina 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 of what he would need as  part of spina 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, if this  so 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  and delivery now there is 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 them, 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  strategies 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, 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 Adam’s  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. Not that, but,  but to just say, I know You named him Joey, and I'm, 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, texts, 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 your you  know, back deck. Enjoy the dishes are disposable done, but 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. 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, oh, 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 as viewing 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, I'm 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's going to be  welcome there. Why would we even disclose that there's something going on  with our child if there isn't so 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, you know,  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 become 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.”



Остання зміна: понеділок 20 квітня 2026 08:56 AM