Video Transcript: Unit 7, Video 2

Victoria - Well, week seven, can you I'm so excited to have you hearing from Barb, who, as I said, is an expert on autism. I want to share a few tools with you in this segment now, but also hear from her, again, because of her brilliant expertise and just the delight it is to have her be a part of this course. So there's going to kind of be some back and forth in this segment between myself and some clips of the video that is her sharing her expertise in this we're talking about tools to support persons with autism. We're going to do this in part one this segment, and then the next video will be part two. So here we go with a clip from Barb so that you can learn from her expertise, and then I'll chime in with some more tools that have come around in the last few years. Barb - So let's start with that difference of repetitive themes and behaviors. Remember, we talked about that could be emotion, could be a topic that a person is really interested in. I was part of a meeting with a psychologist, and they said, I want you to know the difference between this part of autism and having something called obsessive compulsive disorder. When you have obsessive compulsive disorder, you have to wash your hands 19 times before you leave the house or whatever it may be, and you're like a slave to it. It does not bring any joy whatsoever. But if this is your difference with ASD, and you could wash your hands 19 times, and then you go into a building and there's like, Instant Hand Sanitizer. Or maybe you ask every woman there if they have some Instant Hand sanitizer in their purse, because you would love to wash your hands that many times, because it brings, often, great amounts of joy. So I think there are so many great ways that we can think about tools to partner with this difference in autism spectrum disorder. Could you perhaps interview the expert if you're preaching someday, or if you're running a class for children or youth, and somebody has a very particular interest in a war, could they be interviewed about some of their knowledge to share with the group as part of that conversation. Use those areas of interest in a variety of ways. So for example, you might be able to pair that interest, perhaps that's of trains. So you put scripture memory on a piece of paper decorated with trains, there's a much greater likelihood that individual is going to enjoy scripture memory if it is paired with a paper that has a train on it. Or maybe that person loves thinking about World War II. Maybe you could compare a biblical war to World War II. It's possible that this person loves music, and you could introduce some kind of a concept or a Bible story using song or a particular word, sometimes even planned activities or things that might be a little scary if you pair them with something you love. So if you know that there's going to be some kind of a planned drill evacuation, whatever that might be, and that person's job is to hold the football, and footballs bring great amount of joy, there's a better chance that that could go well, although I will admit, at our particular place, we typically try to get all of those children who are sound sensitive out of the building before the fire alarm rings. That has often worked better for us than trying to pair something up. But just see how your environment works. Sometimes we found that you need to put boundaries around a topic that a person's brain is just always stuck there. And again, we're going to try to find other things than just words in order to do it. Usually the The saying is, if I didn't see it, you didn't say it, there's way more opportunity to think about pictures and visuals. So we we often use sticky notes, and it might be used in something like this. Excuse me, is my mom coming to pick me up? And so you give the answer. But is, is mom? Is mom going to pick me up today? Is she coming to this room? You give the answer, but so Mom's coming to pick me up? How many times do we have to do this back and forth question, you've answered it the same way how many times? I'm a big believer in sticky notes and so again, conversations are all in the head. I'm convinced that that individual is not nearly as concerned whether they know the answer, but if you remember the answer, and since they don't have clear vision into your head, remember that perspective taking ability. They're asking because they want to make sure you didn't forget. So I often will just take a sticky note, write the answer down. Mom is coming to pick you up, whether the child can read or the adult can read. We just, again, make it a visual of our conversation, prayer requests, one you know, everybody can have one of them. We just, we just make it a visual and put it down there. So now we both know that we can remember the conversation. So in a way, it's making a conversation visual, getting it down on things. So sticky notes, I love them. I use them all the time for answers to questions, for details, again. Now we both can see that we both know the answer. I think another thing that we've had to do sometimes is with a topic, we have put things away. We actually have put a box in a closet. Have written something out on a piece of paper and said, you know, you need to put Star Trek or whatever it might be in the box, and we'll take it out at about, did you hear the about at about, you know, 11 o'clock. Now you need to be faithful and allow that person to talk about that at about 11 o'clock. But I think that, again, sometimes it's a visual way of saying we need to stop thinking about that. But you know, that never works for me either. Somebody says you need to stop thinking about whatever it is makes you think about it even more. But this is like a way to put it away. It's safe. We haven't forgotten about it, and we're going to take it out again at 11, oh, at about 11 o'clock. And I might literally put a sticky note on that closet door that says about 11 o'clock, so we both remember when we're going to take that out anyway. I think that has a lot of a lot of power. So again, those are just a few strategies, and I think that they work well in any setting. But now you all go get your pack of sticky notes and try it out, because it's pretty fun, fun thing to try. Okay, what about that? That issue of just desire for sameness, please don't change my schedule. In fact, don't change anything with Victoria - times now the idea of visual schedules. And again, a lot of students are mentioning that this is a really helpful idea. We just wanted to talk about them a little bit more in depth. And so most of these images are probably a little bit familiar at this point. We've talked about them off and on, but wanted to just share that. Again, there are a lot of different versions of these, and they can be useful in a lot of different ways. And I'll put some links in there about some digital options for building your own visual schedules. So visuals to go is an app that you can utilize. There are also some other newer ones coming out that I want to talk about, but someone a while back even recommended to me putting the visual schedule in sleeves like this that are meant to hold, like baseball cards or business cards, but just taking your visual schedule pieces and putting them in there, because you can move that around, you can put that in a binder. There are a lot of different ways to manipulate it and to customize it, as well as to change it when needed. And so I thought that was a really clever way of doing that. And I could even take our vertical habits. And I could cut these up and put them in here if this was to maybe be an order of prayer or an order of worship to make that visual schedule work well. But the idea here is that people with autism spectrum disorder often need predictability and so especially for them, if not for everyone. And they might, they might appreciate the visual schedule that you have up for everybody, but they might also really need one that's just theirs, that shows some more detail and some things like that. So this is why we're talking about this as an individualized planning piece, especially when we talk about using something like a communication device or maybe a real object schedule that they can really touch and have tangible things that make sense to them but maybe don't make sense to everybody else. So these are really individualized kinds of visual schedules that we're talking about. So want to share with you a different one here. I know I talked a little bit about some different kinds of schedules, a binder schedule this one I really appreciated, because you can actually take the things off when you finish them and put them in the all done pocket. So that's a great way of using a binder to do that. And then you could change what is needed to be changed if you're doing a different kind of a schedule, or a different day or a different segment of the day, but again, that interactive piece, and it's a binder just for them to carry around so that they can put the things away when they get them complete and then move on to the next thing. But nobody else needs to see it if they don't need that kind of detail in the schedule. So a really helpful one, and I thought this was a really great way of thinking about this. This is from the autismhelper.com but it's kind of a hierarchy of of the prompting that you're providing. And so you go from least invasive to most invasive. So visuals are least invasive, and then gestures are a little further down. And then you've got an indirect verbal cue, a direct verbal cue, and then modeling, finally, and that what that's doing is kind of showing you the level of independence that you may be providing, or, in some cases, removing. So the more invasive the support, the less independence there might be happening. Which is not to say it's a bad thing, right? And that's what we're talking about here. Is these responsive design plans, especially, are for those who need more support because they're less independent. But I think I like this question and this visual for us to think about, because I think we could think about, well, maybe we start with one, and we start to build our way up this ramp into the others, so that there is more independence. And so one tool that I have recently learned about is created by something called empower me, and they call these my guides, and an organization called benevolence United is working with this technology platform to create something specifically for church context. And I'm really excited to learn what they've got going on, because they use this app and this website to create these guides that might have video, might have picture, might have words in them, and they're custom created for the tasks and the processes that an individual is going to be going through. So it guides them through it when they push play, or they swipe across the screen, or they hit, they tap, they've completed it, and you can program it to do all of those different things so that they can respond in the different ways that you are expecting them to, or that you need them to, or that they need to in order to go on. But these guides have allowed people to be extremely independent, because now they don't need another person to continually guide them through these things. They know how to navigate the library of their guides, and they click on do the dishes, or, you know, greet at church, or whatever it is. Now they have this guide that walks them through it, and so they're independent in following the instructions and doing it on their own. So it's a beautifully independent, a beautiful way of growing people's independence by using a technology tool. So just wanted you to know about that tool, because I think it's pretty exciting, and there will be more and newer things coming yet. So there's kind of this balance of new and amazing as well as some tried and true things that have been around for a while. So listen to also some ideas that Barb continues to share from her treasure trove of experience. Barb - Sometimes change in routine. It's helpful to have what we call transition routines. One of my favorite spaces that I was in was in a children's environment where they had, you know, whatever, lots of stuff going here, but against the wall, they had a line of chairs with each child's name on the chair. So listen to this masterful way of doing it, of making a transition. Okay, boys and girls, we're done with our Bible story. Now, everybody go to your transition chair. I thought, really, they're not going to know what that is. Oh, they quickly scooted over to their chairs, and there they are waiting. And then the leader goes over and said, now it's time for snack. You may go to the snack table. They all go to the snack table. Do you know what she did when snack was done? You bet. Okay, everybody go to your transition chair. Every, every transition was made from those chairs. So she put stability on making change by always doing it the same way. Think that's possible to do in other settings too. Where you end a certain segment by saying, okay, you know, now this is done, and now we move on. And if every transition has the same words that cue the next opportunity, that can be perhaps helpful. So think about that, whether it's words or whether you know certain phrase or those chairs a certain action, building in routines, in transitions, can be really, really helpful. Another thing that I have found for students moving from one space to the next is to allow them to carry an object. And to be honest, I'm not exactly sure why this works, but it's almost like the pressure of having their body move from place to place is too much. But if they're going to move the crayons over to where the teacher needs them, or if they're going to move a note over to somebody in the sanctuary, if they're going to they have an item, it's almost easier to move the item than it is to move their body into that place. So just something to think about. Victoria - All right, so I wanted to share a couple of further ideas, including things like have a job to do. So often, working with an individual who is trying to navigate their own body's needs and their sensory needs and this need for routine and just struggling with transitions, having a job to do can be extremely helpful. So whether that's taking a heavy batch of books from one room to the next, or even one chair to the next, or sorting something, or cleaning something, or helping another individual, can help to give them purpose, to them being in the space, to them interacting with another individual. And it's just a great way to say, what do you what do you like to do? What might meet a need for you that is also now going to be a great way to help you engage in this space and in this time and in this activity. So I think giving individuals jobs to do that they choose is a really great way of doing that. Here's some more from Barb about word use and language, and then you'll hear a little bit more difference in the area Barb - of language. Let me tell you, this is a big deal in congregations. I know this because I have had to mop up several messes, and let me just tell you, so I sort of warned you about this. If you're going to put down that worship is from 10 o'clock to 10:15 It better be from 10 o'clock to 10:15 on whatever clock you've got in that place. Or that individual might call you out on that sometimes changing a word worship, usually 10 o'clock to 10:15 will buy you a couple of minutes, but I often recommend just saying worship, offering prayer, whatever that is, so you just have a sequence without the times, because that's much easier to coordinate. Aside from this individual always calculating time while you're moving through those items again, please be careful with your church language. I mentioned something like raining cats and dogs. But do you know how many times we use language that would be confusing in a congregational setting? So I will never forget the day that one student vowed he was never going back to church again because somebody asked him if he wanted to give his heart to Jesus, right? What is that person thinking of? What is giving your heart to Jesus actually mean to this person? We do it all the time, and even scripture is filled with those ways of using figurative speech, not literal speech. I had one individual where a preacher had said that they could be covered with the blood of Jesus. It took me six months to convince that person that that what that meant is she was so horrified of that event. So again, we're using words that sometimes have very different meanings to individuals. I know one of my friends who's an adult, there are four people in her church that sit beside Sandra during different events in a worship service, so that they can serve as an interpreter. So if they're reading about how God gathers his chicks under his wings. They will simply write in her dictionary that does not mean that God is a hen, right? And explains what protection that means. Now they don't have to do it a second time once they've explained it once, often, Sandra is able to roll with that. She's a bright woman, but, but those kinds of things just don't make any sense to her. There's another pretty famous speaker in the area of autism. She happens to have autism. She was recounting some of her experiences growing up, and I thought I was just marveled at that. She said, You know, I didn't understand why there was a man at the end of every prayer, right? How do we end a prayer for Jesus said, amen. Why do they put a man at the end of every prayer and and I think, you know, there were some other very confusing images. She was in her 50s when she finally told somebody to pull the car over and took a picture of a rainbow that was like touching the top of a power plant. And because she was always trying to understand what it meant to the power and the glory. So what's the ending of the Lord's Prayer for that is the kingdom and the power and the glory. She didn't understand power and glory, and had to see this vision in order to understand what that could be. But how about if we had supplied some pictures to her as she was growing up, or as part of a worship service? What does God's power and God's glory look like, if those images and those words had been explained, she might have had a very different image of who God is to this day. So again, how can we create those kinds of opportunities in words? Usually, less is more. Don't use so many when you're giving instructions, directions, just, you know, say it short, like I said, if I didn't see it, you didn't say it way better to come with visuals than it is to come with a mouthful of words that can, again, be very difficult to digest. Limit the verbal interactions. Use direct statements. And remember when you're giving instructions, please say what you want the person to do, as opposed what you don't want the individual to do. So let's say you just tune into the last three words of this. I can't believe it. I am really getting irritated with all of you. You walk down the hallway all the time and and what are you doing? Your hands are on everybody next to you. Seriously? How many times do I have to tell you, do not hit your friends. And what did you just hear? Hit your friends? And what a most excellent idea. I'll just think about that over and over, hit your friends, hit your friends, hit your friends. And so again, we're much better off to say, oh, keep your hands to yourself, or keep your feet on the floor, or keep that liquid in your mouth instead of Don't spit, don't kick, don't hit, because, again, you've now planted that idea and that word in an individual's mind. So giving directions, one step at a time, and also pairing directions with visuals can be super, super helpful. Yep, there's my phrase, and I've done it several times over, but it's really true, if I didn't see it, you didn't say it, words just don't have all that much power. Many times, even to that person who has a lot of words to speak, words going in may not have all that much meaning. So be careful with that. Please take note that if you have a person who is a fluent reader, it does not always. Mean that comprehension is great. In fact, you may need to explain several concepts. Remember, even that Speaker I was talking about if she would read the words power and glory, to be able to translate that in a setting accurately, might really be difficult for this individual who has her doctorate. So we have to really be careful about comprehension of words, and also, especially if you tend to be a leader who uses a lot of jokes or sarcasm, be careful with that if you are to say to your group before the Christmas program, break a leg, you will have one person who is incredibly confused that you just told them to break that leg. The other thing that I think is so important to remember as well, is often we use jokes, and you'll have the group laughing, except for one person, and then you say something that's not funny to anybody else, but that person just cracks up again. You connected with a word or a concept that that individual found funny. That's a pretty common occurrence in certain settings as well. So again, those are just some things to think about with the language difference that you'll often see with individuals, and yet, lots of great ways to be able to bring in visuals and to be careful with your words and directions. I will say one of the things I often do, if there's something going on in church, I'll often suggest that you have one person come in and serve as the listener, because so often we don't monitor our own words. So this is a great Sunday school example, and this child has done this for like, two months already, so it was unclear why today it went this way, but the teacher said, I wanted everybody to pick up a carpet square and sit down so all of the other children inserted the middle step of carry it over to where you have Bible Story Time and sit on that carpet square there. Can you imagine what this child did? Right? Picked up a carpet square, sat down right beside the pile. And again, it would be confusing if somebody would call this kiddo out. Say, What did you just do? Are you being smart with me? This would be terribly confusing for this child, because they were just following instructions. Very smart preschool Sunday school teacher who went over understood some of these differences with autism spectrum disorder, and said, You know what, I forgot to insert that middle step. This is what I really wanted to say. Would you pick up a carpet square, carry it over, whatever. So she filled in the remaining steps. But remember that that language difference can happen, and frequently does when somebody is giving instructions and somebody is following and it just doesn't go the way the leader had intended. Having a listener there to say, oh, but this is what you said can sometimes be very helpful. So remember that? Victoria - Well, Barb's given us a lot of good things to think about, and I just wanted to mention that there are a few resources that I've learned about since Barb's passing that speak to this idea of language, and especially language and Christianese, like we've mentioned before, and the churchy words that we might use. And so some others have thought about this. And I love these books put together by Dr Janelle Nordell And Isaiah. Nordell called How can God be a rock? A children's guide to idioms in the Bible, much like that idea of giving your heart to Jesus or being washed in the blood, or God being our rock. And then they did a sequel called from the heart. And so I just, I know these are designed for children, but they can help people of all ages as well. And again, I think, I think it's really helpful to note that people with disabilities are the ones producing these resources that can then help others. So I want you to know about those things. I also think it's really fun to notice that it could be worth studying some of the Hebrew and the Greek phrases, or the culture of the day in order to clearly talk about scripture, because it can be sometimes the interpretation of the scripture, and if we really look at the cultural context, sometimes that can drastically help someone to understand more what the meaning is behind this practice, or this phrase that we've been using in our churches, and again, that can help a lot of us, extremely helpful for those who are going to struggle to process and produce language in our typical ways. So those are good. I also want to just mention some translations of Scripture that can be helpful, such as the message, or the new international readers version, the easy to read version, they're helpful in English, and like I've mentioned, right watching scripture, so seeing it, the Luma project is just one example of that some others like the Jesus film. But the Luma project is available in over 1,656 languages and Bible versions. So I just think that's pretty phenomenal, and would encourage you to look at the international community that's making the Bible visible, and think about how that could be useful for individuals for whom language is a challenge and maybe a barrier to accessing scripture. Right? So I want to just bring up one. We've been talking about the language of differences, not necessarily deficits, and that's to better reflect that CO laborer attitude that we really want to model and to have in our ministry settings, that puzzle piece perspective. But I also want to bring it up, because these differences do not always mean that there is a need for support. There are differences, not always deficits or disabilities. So is it a deficit to perseverate or to constantly think about Jesus and a desire to draw others to him? If that's the thing that we continue to come back to and to focus on, I don't think that's a disability. I wish that I had that and I didn't get so caught up in being distracted by all of the other things. I wish I could separate more and come back to Jesus constantly. Is it a deficit to be extremely particular about the order of items or events or about how words are used? How could that be a great gift to the community in our worship settings, in our community settings, in our interpretation of Scripture. Can we use the gifts of these individuals again? So just again thinking about why we use the word differences, sometimes, not always, the deficit, the disorder and the disability that sometimes the medical community or the labels and diagnoses can give us which are useful. But I just again, want to extend our imagination a little bit for how we can think about it differently. So in that vein, I want you to hear of a story about a girl named Jessica that Barb just had a wonderful relationship with, and a pretty impactful story about Jessica and her relationship with Jesus. So have a look. Barb - Just have to tell a story about a student of mine that totally rocked my world and changed it. Her name is Jessica, and when I met her, her repetitive theme and behavior. This is, you know, this is who she was as an individual with ASD, she was the one who loved Star Trek, and she could recite long passages from any Star Trek. She knew who the guest stars were. She loved the costuming. She loved the costuming. And I wrote about her in that book that you're reading about the accessible gospel part, and sort of how I presented that. But I think what hit me is that I was there the day that Jessica allowed God to have her puzzle piece said, I'm yours, Lord, I I want to, I want to follow Jesus. And I didn't ask her. She wanted to give her heart to Jesus either, by the way, but, but to say, I love you to Jesus, and to let Jesus be the leader of her life. And I think what I got to see that day is what I can only term as the miracle of salvation, the miracle that instant change. Jessica has no social veil, so I saw instantly how the Holy Spirit invaded her life and changed it. And it's not that Jessica doesn't have autism, she does, but that fascination with Star Trek, it was gone. Didn't hear about it. Now you know what her area of interest is telling people about Jesus. Do you see my Do you see my cross necklace? Do you know why I'm wearing this? She would talk about Jesus to people on the bus. She would talk about Jesus to people in the grocery store, to her grandpa, who happens to be an atheist. And that was always like we had, we had to talk about that a little bit. But it was one of those things where Jessica was on fire, her repetitive theme and behavior was telling people about Jesus. And I cannot call that a deficit. I call that what God does with any one of our puzzle pieces, all of our greens and all of our pinks when we hand that puzzle piece to him. So I just wanted to mention that, because I think again, as we go through this, these are differences in wiring, and we have to recognize that God uses each one of us with all of our greens and all of our pinks. And that certainly has been true of Jessica. She also made the most profound statement people would say her IQ is is in the 50s somewhere. But boy, listen to this statement. My body has autism, but my spirit doesn't seriously digest that one for a little while. She's just this amazing girl who's been part of my life.