Video Transcript: Examples from Congregations

I think the other part that really wasn't easy to incorporate in some of the other sections: this person needs to be part of the plan. So for example, I can say, look, during worship, this person is going to wave this streamer because we know this person can do this motion, or whatever. But this person might think this is stupid. They might not like this idea, right? So this individual really needs to be part of the planning process, too, to as much of a degree as possible. So again, we're going to have some examples from congregations. But you need to understand the individual for whom this plan is for really needs to be part of the planning process, if possible, and in whatever way possible. So, we'll go ahead and talk about some different examples, but remember, include that person in the plan. 

So I wanted to, again, show you this great picture of Marie. I have referenced her several times. Maria is my friend, again, who has a control over her eyes. She can look at you when she's saying yes, look away when she's saying no. And my introduction to Marie, she actually was part of my congregation for a while; and I'll tell you the rest of that story, too, which is sort of a sobering thing to remember as congregations as well. 

But Marie, the first week I met her, I didn't know anything about her, right? She happens to be a wheelchair user. She was in the front, I knew she might not have a lot of words to say, but I wasn't sure. And I thought, oh, here I am Barbara Newman, I can go talk to her, right? So I wasn't actually doing things so well. I mean, it's good to be friendly, but I didn't know anything. And all I saw was this person was frantically moving her eyes around. Our conversation lasted for 30 seconds, if that, because I was just talking at her and she was just moving your eyes around. And I thought, oh, no, what have I done? So I needed to get some more information myself before I could have a conversation with Maria and, and so I found out some information about her. 

And as a church, we found out even more information about Marie found out how she communicated. She not only could say yes and no, she had a board of words and phrases, a paperboard, that was stuck in a packet in the back of her wheelchair, and she could scan. So if you put your finger down the rows, she would look at you when you got to the row that the word or phrase was in. And then you did the same with the columns and she'd look at you. And the intersection of the row and the column was the word or phrase that she wanted to say. So clearly, it took a while to have a lengthy conversation. But she could get her needs known, if she was uncomfortable in her wheelchair needed repositioning. 

We now knew how we could communicate. Also yes and no. There's so much you can do with just yes and no questions and it was great. And I also found out she could read effectively if you propped a book up in front of her. Her IQ was same as mine. It's just a very typical IQ. And you know, people didn't always imagine that because she didn't have words to say. And I would always make a joke - I asked her and she was very willing to be an intercessor for me and so as I traveled and I smiled at her one day and I said you know what? I so appreciate about it as I was sharing prayer requests, you always keep them confidential. And we had the best laugh about that. 

But anyway, that was Marie, but truth to tell, as I mentioned before, to make church work for Marie, we really needed to have a personalized plan. We needed other people. She wanted to go to women's Bible study, but the women in the Bible study, they needed to know how to interact with Marie. And the people, again, she was in an adult foster care home next door to us, but Marie had to tell them in her own way that they could share information with us. So we would find out how she could eat without choking or gagging and we found out how to do different things. So we formed a team that were Marie's friends; Marie’s lover, people who love Marie, and it's just this beautiful thing. Eventually caregivers who were there I started to come to church. And it was a cool connection. 

And many times people who work in adult foster care places don't have a lot of respect for church. They haven't found great love or respect for clients in those places. And so sometimes you have to win over caregivers. And one of the ways that this church did so is that they took a special offering. I think they called it something about hilarious giving, and decided that this home should be the recipient of a portion of that money. So we went in and said, Look, we want to spend $15,000 in your home, what do you need. And Marie couldn't actually get into the kitchen because of the size of her wheelchair. So the deacons went in and widened the door, they put air conditioning units in each of the bedrooms. Anyway, it was this wonderful opportunity to express love to often underfunded facility, this adult foster care home next to our church. 

So Marie was there, the caregivers there soon found that they could trust us and Marie wanted to host a small group at her house. And so they allowed that as well. And it was just this great opportunity. But we needed to know some basics about especially self-care; eating, comfort in her wheelchair. And so it was a process of getting to know Marie, a lot of the things we talked about, and then how she could communicate some of those safety issues when she was in distress, or whatever that might look like. 

So our plan evolved into this sort of enormous, wonderful opportunity because Marie had this desire to connect. But all of the communion service in church, they needed to know how to serve Marie communion, how to ask her those yes and no questions. The people who were part of the women's Bible study also needed to know what were good snacks to share in that space, how Marie would communicate, how she could participate and answer questions. So it was, again, we gathered input information, put together some of that critical information in writing, got Marie's permission to pass that out to those that were part of communion serving, women's small group, and those leading worship, and part of her small group at home. 

So again, those are some of the pieces that I think are important. It was Marie’s plan. And I'm I know it's sort of an informal way of doing it. We didn't have a lot of written information for her; it was more an act of discovery. The final thing was just sort of this summary of those key pieces, because the rest of life worked well for her.

Distressing. And however, and something we weren't expecting is all of a sudden, Marie had gotten sick, went to a hospital, and she was moved to another home. And we were not allowed to have the information to find her. And it was a very distressing time, especially because we wanted to make sure she was okay. And that she was in a good place. And it took a person, really, it was almost a year later that somebody could track her down. It was at least an hour away from where our church was. But we really wanted to have eyes on her so that we could know that she was alright. So again, many times adults, especially if they're funneled away from that place that's familiar and into another system, you don't always have the right even to know where that person went. Many congregations have suffered, oh grief, from losing contact with individuals who've been part of their community for a while and all of a sudden they move and you are not allowed to know where they went. And so you know, I don't have a good suggestion for that except we really tried to be persistent because we needed to know that she was in a place where she was well cared for and loved, and felt better after we could see her there. So that's Marie. That was Marie’s plan. 

And then I'll just introduce you to Ben. Ben is an individual who is known as having autism spectrum disorder. Ben loves technology. Ben loves music. Ben is very enthusiastic, and he's very strong. He's sort of a big guy. And this was a few years ago, but I'll tell you the story when he was about this age. Ben also did not have access to words. He would get very upset with things. He redecorated his bedroom with large holes in the walls that he had punched, because he was upset and that's the way that he communicated his upsetness.

The family had joined a church and this family attended with their daughter, and the couple, the mom and the dad, and then the pastor found out that for over a year, with a caregiver at home, was another son. And he said, but we want your other son here, too. And the parents are going no, I don't think that you do but, again, this is a time when, all right, what are the goals? Do we want Ben here? Does Ben want to be here? How can we work this out? And given who Ben was, there was sort of this joy with music, there was this opportunity for movement and for connections, but also some fear of are we going to have our rooms redecorated with holes in the wall? So there, there was this opportunity for a plan. 

Long story short, got to know Ben, set up a team around Ben, and we called it the football team. And each Sunday, there were two sort of athletic guys that were Ben's buddies, and we had eight of them. And these guys surrounded Ben and he had a calendar at home, so he knew which two people would be part of his life. From there, we discovered what he loved. And the first 10 minutes of worship was what he loved. After that, not as much. The first 10 minutes were filled with music. And what they did since Ben love to move is they clear it off a ramp that was off to the side. 

The first day, again, every good plan has two parts, the pastor said, I'm so excited that we have Ben joining us today. I want you to know, Ben loves to worship and he loves to move while he worships. And I know that many of you have struggled with that. So we've cleared off the ramp on the side and just really would invite Ben to lead us into that freedom in worship where we can move and praise God at the same time. So again, now we got Ben moving on the side, the people get it, they figure Yeah, we got to learn from Ben here. So I would dare guess Ben’s movements, and his great joy in worship loosened up a lot of the people in that community. 

But at a certain point, when it was clear, the parents gave a nod to the two people scheduled that day, and they took Ben to a space in the in the building that had all of Ben's favorite things. They didn't have holes in the walls because they put a lot of stuff that Ben just enjoyed. Church was one of his favorite places to go because it had cool stuff. And it had big guys. And as Ben got more comfortable, he stayed a little longer in worship. And as the people got more comfortable with Ben, they too were engaging with him, they would call his mom and say, Hey, we're going to the football game; can Ben come? And she's like, seriously? But he just became part of that community. 

One of my favorite stories from Ben's team, is that as they were putting it together, they issued a note to the congregation, who would like to come for an informational meeting about hanging out with a newcomer Ben. And one of the members that put his name down had actually made a decision that morning that this was his last Sunday he was going to church. It was stupid. There wasn't anything for him there. And as a teen, he was done. And it's fascinating to me that that was the day they made the announcement and believe it or not, I'm sure you will, because God never does anything at random, guess which person Ben connected with the most? And even when it wasn't this young man's turn, he was more calm at church when he could see Nick. And so Nick was there every Sunday, a very important part in Ben's life, and I thought isn't that just like God, how those plans work? And as the church was faithful and saying, Look, we want Ben here. Of course, Ben has grown over the years and is much better able to worship and be part of those settings because he's practiced now. And that's a great place for him. So again, that took some coordination, getting to know Ben, what are we going to include him in? We need a space, we need some people power, we need to train those people. About once that was in place, again, that personalized plan worked well, most Sundays. 

Another key thing, too, that Ben did have a caregiver and that caregiver came for the first three weeks so that everybody – four - so that all of the caregivers could experience this caregiver who was so good with Ben interacting. So that was a huge boost. She was working anyway. She was working at home. Now she was just coming for four weeks on Sunday to show people how best to interact with Ben. So that's Ben's story. 

And now, the final story I have is about Jonathan. Jonathan's a young adult, and his mom said to me one day, you know what? I'm getting older, and Jonathan's dad had passed away. I'm getting older. And what I really want to know is that somebody knows when it's Jonathan's birthday and can have a party for him. And I'm like, Whoa, seriously. And Jonathan was very much stuck at home. He worked a couple of hours at a grocery store, but really spent a lot of time with his aging mother, and he would go to church sat with mom and all of that. So, again, we thought, okay, we need a plan, right? We need a plan so that people get connected with Jonathan, and that Jonathan can connect with people who are not just his mother. 

And so Jonathan again, had certain things we found out what he loved to do. What he didn't love to do. We got some people who were willing to hang out with Jonathan, one time a month. So, got four such people, or groups, so that every week Jonathan had a connection with one of four people or families within the within the church. And sometimes they’d do things that Jonathan loved. He loved movies, he loved concerts, he loved, he loved to just hang out at the mall. And so they found out what Jonathan enjoyed and they just each took a weekend a month and soon it didn't take long Jonathan doesn't sit with his mom anymore when he goes to church; he sits with one of his friends. And every year on his birthday, guess what they do? You bet. They throw a party for him at his church, because that was part of, again, the conversation with mom and with Jonathan. What do you want out of this? And how can we set this up? 

It's just a really neat opportunity. Jonathan didn't need a personalized plan for doing worship, he loved worship, and he enjoyed the entire service and could participate that. He needed a plan for doing life beyond his mom. And that was what this church could provide. If you think about it, what a great opportunity for congregations. We go the distance. School is short, kids are done with that. But then comes the next phase of life. And that time into adulthood, and how important to make those relationships happen within church communities. 

So those are my three examples. From Marie, to Ben, to Jonathan, just a chance to hear how some other church communities put together, supports a plan, again, always looking at plan for the individual plan, for the peers or others involved in the plan. Always making sure - Jonathan clearly was very much a part; so as Marie; Ben less so because he didn't have as much of the ability to speak into a plan. But both Maria and Jonathan really helped groom their plan, and helped make changes as we looked at it every year to say, How's it going? Do we need to change anything? 

So I'm excited. I don't know who you have at your church, but I bet and hope that God has brought someone to mind that you can think about what kind of plan could we put together so that this person is more a part, this person has more chance to belong, to be part of our community? 

Again, I would invite you to play around with our website, we have lots of supports on there. Even additional tools you can use to gather information about people and just looking forward to spending the next weeks talking very specifically about Okay, so what if this person may have autism? What tools might work? What if this person may have been diagnosed with dementia? What tools might work? We're really going to take some time to go through different categories. Not that categories are all that important, but it's the tools that can often match up. They can make a huge difference in the lives of the people who are part of your congregations or who would like to be part of your congregations. 

Have a wonderful day.