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(music)
It's all centered around the term "quality of life" and that's the
hope for the future, that she maintains or improves the quality of life.
I was ready for her to get healthy so we could get to work, because
I wanted to know what we could do to build on that.
Molly just she's one of those people that when you go through life,
you just feel a connection with certain people, and that's kind of
how I feel about Molly.
I haven't seen her for...I retired from the Hab.Center in 2003, and I
know I haven't seen her since then.
And I really I didn't know where she was, other than I knew she left
Marshall and was living in the community somewhere in a home in the
community, and I just sort of stumbled onto her on Facebook one day,
and I was like Ohh my gosh!!
There's Molly on facebook.
So, that was always a goal with moving her to the community was to
get her off the Haldol and we..
community of Marshall, they were going to work with us on that, and
that doctor in the community was going to work with us on that, but
she kept getting sick.
So when we finally moved her to Columbia to Tina it was an easy
transition, because she'd actually every time she was in the
hospital, I don't think she got the Haldol, I don't think so.
So titrating her down off of that was pretty easy, although you did
have some behavior issues.
The first three days, and I remember talking to Tish and I said she
tried to bite me.
She's never done that.
And Tish asked "What do you think we should do?" And I said, "Let's
just wait it out.
Let's wait until it's out of her system and see how she does?"
And I so valued that about Tina, that...you called me I was in
Springfield, Missouri and I happened to be with Mike Mayer who is a
Behavior Analyst Consultant along with the Behavior Analyst from the
Division of Developmental Disabilities, they were there together with me.
And I just freaked out thinking "Ohh my Gosh she almost bit Tina.
Tina is not going to want her!" Ohh my gosh.
They were like no, no, no and I told them your reaction and they were
like "perfect reaction!" She's just coming down off of it, she will be fine.
They calmed me down.
And she didn't need it, and because she gets the attention she does
in the community, she doesn't have behavior issues.
A lot of good common sense, early detection, prevention has kept her healthy.
She's only had what one hospitalization in the last year, and that
was because of the Dylantin.
So we couldn't be happier with how she is doing.
Ohhh Molly's favorite, I think would be eating out.
And we take her to a lot of different places, you know.
We're trying out new restaurants and stuff.
When we first originally started we knew that she was crazy about
Dairy Queen.
So, we would always take her right to Dairy Queen and then, we
started to venture out little by little and started McDonalds,
Wendy's I think we went to HyVes nice and
she can be around a whole lot of people at the same time and enjoy her lunch.
She likes outing like the park, and outside...
Yeah and finger painting...
Her favorite things is like going also to the park and especially the flowers.
The sheltered garden.
She will pick the flowers, and I don't think we're allowed to pick
the flowers.
And she will look at me like this, "mmmmmm" okay...we're going to pick
the flowers.
And she not only likes it here, she is enjoying it.
Her personality has done nothing but emerge more and more.
She's eating well, very healthy eating, and drinking well.
She gets out in the community a lot.
And so, at the end of the first video, Tina said that she was ready
for Molly to get healthy so she can get to work.
And she has been.
And Molly has swimming, is it twice-a-month, I think?
Tomorrow.
And out in the community a lot.
I have never seen her so happy and healthy.
The doctor's in Columbia have been awesome.
They have been excellent.
Then from that, then we have to look at what is the overall quality of life.
And I think that's where a lot of people, a lot of families, and a
lot of guardians have never dared to think in that direction.
And it's not uncommon for us to see dramatic changes, not only in the
health status of somebody, but in their overall happiness, and their
overall engagement.
And how much they are laughing and playing, and those kinds of
things, and you see that in Molly.
You see this incredible personality that is allowed to be now, and
she's ornery and she's got a stinky, funny, silly kind of
sense of humor.
And she's got her pace that she likes to do things at, and if you try
and rush her she's like the cantankerous grandma who doesn't want to
do it any faster than what she's doing it.
And isn't that wonderful?
That's... we're able to see and know that person of Molly.
And she also has a sense of humor that is well I guess some people
might say a dry sense of humor.
When something funny would happen in the group home where she lived
there in Marshall, and sometimes I would be laughing out loud, and I
would look at Molly, and Molly might not be laughing out loud, but
she would have this little sly grin on her face.
And I would think, "okay she thinks this is funny, too." It's not
just me that's laughing, Molly thinks it's funny too.
She loves getting out and going to a park.
She loves the outdoors, that's why I'm thinking she loves
sitting outside.
She loves the breeze, the sunshine..the potting of the plant, if we
had more time she would probably love to do that.
She loves to get her hands in stuff.
And going out to eat, loves it.
Loves the mall.
Doesn't mind the action and the activity huh?
No!
In fact, they've taken her to the mall in Columbia before and she
loves to watch the merry-go-round
they haveone of the big carousels and when
they think it's time to go, she will actually put her feet down and
she won't let them move her wheelchair.
She's not ready yet.
She is a Thomas!
(carousel music break)
I remember the pictures I have of my sister, Molly, and my older
brother and I are right out there on that front stoop, that's where
the last picture that I remember was taken right out there.
And I remember the three of us growing up together.
I remember she was very strong.
I remember always wanting more from her, because I had an older
brother who was a little bit mean to me; but I wanted a sister.
I wanted my sister to be my sister, and I was always a little sad
about that, but I think that we tried.
I think that she was my sister, she just was until all of the sudden
she wasn't, and then she was gone.
(music break)
Having Molly up here to get up...
it's actually in her plan to make visits here.
We don't have the frequency down yet, because we just don't know how
to handle it.
I think maybe we have at least 3 times a year, I'm not quite sure;
but that's going to be adjusted as we get more used to it, as we
learn what we'll be able to do with her up here.
It's...I don't know..can she really ride in an ATV?
I don't know...we don't know...how will she be in a pick up truck?
How is she on bumpy farm roads?
We don't know.
We know she can come in this house.
We know that she can do that, but the purpose of this visit is to see
how much we can do with her, and after a two and a half to three hour
drive it's going to be interesting, it's a learning process for all
of us actually.
She can't probably take a 42 person gathering of family yet.
That's why I didn't do it this time.
Because it's hard for the rest of us.
Yes!
It is!
(music)
Ten years ago there were still the presumption that the vast
majority of people who had significant disabilities like Molly were
always going to have to be in a state institution.
You heard that, well that's good for some, but there's always going
to be those people who are going to need 24 hour 7 day a week care
that only a state hospital or a state facility a developmental
center, whatever they call it there, can provide.
And now, we've got unsurpassed evidence that is saying that's not true.
People who have very significant disabilities can be
very, very happy, very successf
And as we look at our future as a nation, we're having to
come to grips with some realitis that when you talk about it cost me
$200,000 to keep somebody in a state operated facility, or it can
take that half amount, or less than that, and serve that person
in the community, that means I n serve two or three for the price of one.
So from a public policy standpoint, it only make sense
for us to continue to look to ws best practice.
What is the evidence say is success?
My attitude is like we treat as like a member of my family, you
know, I want to be like hey, this is the one like a part of my family
that gives all the loves, the support and care, that's for me.
And the other stuff we always told that to them, this is not only our job.
According to like everybody's trait and enjoy things, this is like if
you want Molly or the others that we have here, to respect you well,
you have to treat them and respect them too.
So that's what we want, and that's why I don't have any problem with
Molly, at the beginning; because I don't think that Molly is
only a part of my job.
No, I don't treat her like that.
So, I don't know...and that's what I saw at Tina's the way that she
give it to her own clients, their consumers, she never put any
boundaries, so I learned from that one.
I also learned a lot from Tina, too.
And she's always in that mode where she wants you to, look
let them do it!
They can do it!
They can do it!
So, that motivates us to say okay, if they're more independent
they're more happy because they are doing this stuff for themselves,
and we put a lot of that off into our work, too.
We watch her, when she's with them, and then we peel off some
of that for ourselves.
So when we're taking care of them, well Tina said they can do this,
let's see if they can do it.
And with Molly and stuff she gave me a routine when I first met
Molly, and I followed that routine to the letter, I have never had
any problem with Molly.
Everything I asked Molly to do she always cooperated with me, and she still does.
She's just a great person to work for.
One of the other things you hear a lot of times is, is that
the staff aren't trained they're not going to know what to do.
The reality is if the staff are trained differently, because
they have to do different thing, but they are just as qualified as
anybody else to take care of them.
So, that's a concern.
I know that at first Molly is a very had a good character...I learned
that first is Molly don't want to be rushed, if you don't want to get
smacked, or squeezed, don't rush her.
She's a very sweet woman, I mean like, how can you be able
to communicate with her, she dot talk?
Well, you can observe her and watch her,
and you learn as you're doing that.
Molly is when she makes her choices and stuff, she is very prompt on
what she wants, and that's exactly what she wants.
And there is no changing her mind about it, so don't even try.
And we always talk to Molly and tell Molly what we're going to do
before we even do it; because that way Molly will cooperate more
better when we talk to her, and tell her "Molly we want you to stand
up for us." And Molly will give her her time, and when she's ready
she will stand up for you.
And that's the way it is easy for me to transfer her back and forth,
and with minimum assistance with the chair, be able to take Molly out
into the community all of the time.
One of the other major concerns is, is that there's very high
turnover among staff in community settings.
And quite honestly, in a lot of places that is a problem.
The wages for the folks who are working in the community are
not as good as they are in the r state operated facilities,
things along those lines.
And I tell families is that what you want to do is look for
an organization, or provider, tt doesn't have that problem,
that doesn't have the turnover problem, it has stable staff,
that say positive things about r employer.
Those are the kinds of folks you want to try and gravitate towards.
Like transporting in a van, or at first when we're about to leave,
she knows that she's going out in the community.
She's enjoyed it.
She was so excited.
She can't wait.
Now, when we're in the mall and we're in Barnes & Nobles, and
the toys and things, she will gt and she doesn't want to leave.
She is not going to leave the mall because she's still want
to be in the mall.
And we're like wait a minute Molly we have gotta go, and she's
looking at you like mmmmm....and then, she will hold onto that toys
and we can't go anywhere.
Can't go nowhere, because she still has the toys.
She still has the toys.
Okay, let's go to JC Penny and look at some more clothes,
but Molly, I'm sorry we trickedu and she knows it,
she's so smart...once when we pr in the van or in the car,
she was not going to stand up.
She was still in the chair, it's time to go...Molly just sit there...uhhh
and all the way from the mall to the house she was mmmmmmm,
because she was complaining I'm not ready to yet.
I'm still having fun.
(music)
She has amazing individuals who, not only take care of her,
they love her.
They love her.
You can tell.
They see Molly's personality and they value that.
Well, they love her.
Which I love.
The one thing that I would want to do with Molly is I want her to
know my voice.
So, I want to read to her.
I have one of Mom's first grade readers, and when she is probably
resting, I have a really nice mushy pillow thing for her,
which I know she will tactilelye will really like it, and
I just want to read to her. Really for me more than for her
Sometimes when I look at her...I know she really doesn't know us
I think that she really looks at me when I am around.
I think it's because I remind her of our Mom, because I think my hair
now is kind of like my mom.
I have the silver and the pull back.
But I like that and I think it's interesting that she looks at me,
like I know you...and I don't know...I always wonder what is going on
in her mind, and I don't know wt she can see, and I don't know
what she hears, and I don't know what she processes.
So, I think my reading to her is really, for me for her mind, but
maybe in the long run she will enjoy my voice.
So that's my goal.
Water for the Cow.
After his cow had had enough to drink he started to take her to
a grassy field.
Suddenly, he remembered that the baby was sleeping in the house.
"Ohhh this is terrible, said the poor farmer.
Baby should not be left alone, but what shall I do with the cow?
All I know is ever since I have seen her my life has been
completely different.
I'm happy.
I didn't used to be, when I thought about Molly I cried.
I didn't even have to think about it I just if anyone brought her up
at all, I cried because I have always had this basic sadness about her.
I just always missed her.
And now that I have seen her and now that she is back in my life
I don't have that sadness at all.
It's just great.
This is great.
(music)
Hi, my name is Will Jackson.
Molly is my aunt and I have known her for most of my life.
I went to go visit her at the Marshall Center for actually a few times.
So I was introduced to Molly a while ago.
I have known her from Marshall as well as here.
I live and work here in Columbia, I work at Boone Hospital.
We have revamped the whole process to where it is very,
it has to be person centered, cy monitored, family involvement, friends
and I include direct care staff.
They know her better than I do, but I had my son Will sit in on it
because as her future potential co-guardian you need to learn
this process, and my wishes for, which are the family's wishes.
And so and he was fascinated by it, actually.
And actually had a couple of suggestions and good questions; but he's
all of our sons have been raised by strong women..so he just kind of
sat there...yes, Will do you have any questions?
Wow!
Yeah, what about this...good idea...
So he's taking it seriously then?
Ohh he's taking it very seriously...
Plus he's known her his whole life.
And actually you're probably one of the few of us who's really been
part of her life, your whole life.
Well, I feel that I have a lot to learn.
I do need to spend more time with her, and I'm sure that I will spend
more time with her as time goes on.
It's very exciting.
I feel honored that I have the possibility to be her guardian
in the future and share that responsibility with my cousin.
So I look forward to it.
I want to help in whatever capacity that I can.
(music)
Well Molly -- yes anything for Molly
The family dynamic it just all settled down
Everybody gets along, everyone is accepting, its all fine
We are all just kinda like (exhales), and weve moved on
isnt it nice
And then I liked that we had our meal around her
she was a part of it, we all talked
I think the more she is here, the more it becomes routine
for her to be here, so everytime shes here we start with something like that, then its a new thing
It's just like when you come to visit, you don't live here but you
come to visit and we just try to build a meal around you.
And make you feel comfortable.
An excuse to eat!
(laughing).
(music)
But Molly will come here.
And Mom specifically wanted this headstone here so that if other people
wanted to be buried here that they could add their names to
the headstone, I am sure that we will end up with additional headstones
up here because quite a few of us I always want to be on the farm.
We're all adamant that when the time comes that Molly come back here,
because we feel that she's had to live away from the farm most
of her life and she's been trap
here on the farm with her spirit running with the rest of us, that's our plan.
Yes give that to me!
You haven't had a chance to say a thing have you?
(laughing)
(music)
Like I said she's the nicest one of all of us.