Video Transcript: Unit 6, Video 3
Well welcome to the last section of this week. We're going to talk about
examples from congregations, and I'm going to open up the floor again to Barb
Newman, so you can hear some of the examples from her directly from this
previous version of the course that she recorded, because I think she's got
some great things to share that are going to inspire you to think about what does
personalized planning look in some different scenarios enjoy.
Barb - “So I think sometimes the best way to learn is to learn from examples,
and that's what we're going to do next. I have three examples, but I would
encourage you that, as I'm giving these examples, would you do me a favor?
Think about your family or your congregation. Has a name surfaced in your mind
yet about somebody who would benefit from having a personalized responsive
design plan? Can you think of an individual that you really see that even though
you may have some things in place, you really don't have the needed tools. You
need to go deeper. You need to understand this person. You need to build
relationship friendship with this person. And then can put together a plan. 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, 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 to as to as much of a degree as is 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. Marie is my friend again, who has 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 who was frantically moving her
eyes around. Our conversation lasted for 30 seconds of that, because I was just
talking at her, and she was just moving her 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 Marie 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 paper board 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 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. She was uncomfortable in her wheelchair and 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 also found out she could read effectively. If you propped a book up in front
of her, should have, you know, her IQ was same as mine, 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'd after, and she was very willing
to be a intercessor for me and 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 a prayer
request, you always keep them confidential. And we had the best laugh about
that. But anyway, that was Marie, but, 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 was just this beautiful thing.
Eventually, caregivers who were there started to come to church, and it was a
cool connection. 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 our 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 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 we 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 hers. 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. The
stressing end, 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 all right. 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 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. 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, you know, 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? 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's 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 loved to move, is they cleared off
a ramp that was off to the side the first day. Again, every good plan is 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 worshiped, 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 and
worship, where we can move and praise God at the same time. So again, that
would get Ben move it 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 his 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 a football game. Can Ben come? And he thought 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, you know, 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 is his last Sunday, he was going
to church. It was stupid. There wasn't anything for him there. And as a 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, very important part in
Ben's life. And I thought, isn't that? Just like God how those plans work? And as
this 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 but 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 could before, so that
all of the caregivers could experience, 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, felt 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. 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 and they 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 week in the 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 and 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, you know, Jonathan
clear was very much a part so was Marie. Ben less so because he didn't have
as much of a the ability to speak into a plan, but both Marie and Jonathan really
helped groom their plan and help make changes. As we looked at it every year
to say, How's it going? Do we need to 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.”