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Roger: Good evening to everybody.
I’m Roger Holt, the executive director of PLUK, and we have Connie VonBergen,
and our guest today is Liz Miller.
Welcome, Liz.
Thanks for being with us
this evening -- this will show in the evening.
Liz: Okay, thank you.
Roger: Tell us a little bit about yourself.
Liz: Well, I am the mother
of a
seventeen, going on eighteen, year old
with Autism,
and yes,
that defines me.
So that's what I can tell you right now.
I'm also a realtor.
I am married to a
native Montanan, and I am
not a native Montanan.
Roger: Really? Liz: Yeah.
Connie: Couldn’t tell.
Liz: I’m from a little bit further south than Montana.
Roger: As Dennis would say, “Southern Montana.”
Liz: Southern, yes, Southern Billings.
[Laughter]
Liz: And--
Anyway so,
I,
as I said,
being the mother of a child with Autism really defines who I am,
despite
all the other
things I might have been
or might be.
Connie: Well, before you were a realtor, you were a-
Liz: I was a geologist.
Connie: Then you went into realty because you started your family?
Liz: Well, actually, no, I was a geologist when I started my family, but when I found out that my son had Autism,
I could no longer travel. And geology, in this part of the country, would involve travelling for me. So that is why -
Connie: The first of many sacrifices?
Well, you know, yeah, and you say that, but I don’t know.
Connie: I say that to parents, too, when they say –- and I haven’t gone back to work full time since before the kids -- but
they say, “Boy, you’ve sacrificed a lot.” And I say, “Well, sacrifice would mean doing something that I really didn’t want to do.”
And after a while, money and those kinds of things aren’t the sacrifice: it’s putting your child, who struggles in our world anyway, in the hands of other people
and not finding the quality people to work with our kids. Then it’s up to us. And the sacrifice would be just turning them over to somebody else, so I’ve never really thought of it as a sacrifice.
Liz: That’s true, that's true.
But, as I’ve gone through this journey
and have
gone through,
while the child
is small, and so on and so forth,
and
dealt with all those things that you deal with, and you think you're changing the
world
And then, you know, a year later, you find out everything went right back like it was before.
Connie: And sometimes worse,
Liz: Sometimes,
But one thing that I do see that
I want, and every parent that I know wants, for their child
that has Autism or does not have Autism,
is they want their child to have a quality life,
and to be happy,
and to feel like they are
contributing,
and I want that same thing for my child.
And
I don't want my child
to live with me until I die,
you know? I'm going --
I'm much older than he is
to begin with,
and I expect him
to live much longer than I will,
so we, my husband and I, think it's very important that
he be able to live
in his own house.
He may never be able to live totally independently,
but I'd like to see him live in his own house.
And now
I know that I'm not alone in that because I've got lots of
other
mothers who are friends of mine who have
children with Autism, and they all feel that way,
and so
in that --
in the interest of that --
one of the things we thought we could do
is try to
build a subdivision
for people with disabilities
and their caregivers
and basically, I mean, you know,
other people can live there as well.
The goal is to
have affordable housing
that looks good,
that would be a nice place that
you would want to live yourself,
you know, that I want my child to live.
And
I'd also like to see this community have
things where my child could work
and the other
the other residents could work
so they can have a place to live,
to work,
and play,
and also to be part of the community.
I mean some of the things I have in mind are greenhouses that could grow hops for the
Microbreweries.
That's bringing them into the community; it's something they can do; it’s something that would be
Just, you know,
Connect them to the community and be a way to work
and be fulfilled.
Also, some may be a recycling center,
is something else I had in mind.
There's just,
you know, lots of jobs associated with that,
and I obviously am going to have to partner up with other people do this because I
am not
despite
what I may think, I am not
the Queen of All Trades.
Connie: But you might be Mom of the Year.
Which we’re both running for, now.
Connie: Well the other thing you had mentioned
last year when I visited with you, and you
talked at the
“Advancing the Futures of Individuals with Autism”
Isn’t that the name of it?
Roger: Right.
Connie: You had mentioned
the importance of --
an individual owning that house.
As it is now,
talk about that, how the caregiver actually
is owning
the house and if -
Liz: Okay, well, right now what generally happens is there will be a group-home situation,
and the agency that is taking care of the care giving
generally owns the home
and
what that --
you know, a lot of times that’s fine,
but what that does is that
means that individual
that’s being and
receiving the service
is dependent on that agency,
and if they find that they would rather be with another agency,
they lose their home and have to move.
Well that
change is
horribly debilitating
to individuals with Autism and other disabilities.
Very, very debilitating.
And if they can own their own home,
then they don't ever have to move,
you know, they can change service agencies
and they still can stay in their home, and I just think that's
very important
and
they can use Section Eight money now
to purchase a home.
Connie: Okay.
Liz: I'm not the one you need to talk to you about the mechanics of that,
trust me, but there is somebody with the State: they can tell you about that. And
it has worked, it has happened
you know; also,
I mean, there just is --
there's a number of ways, and
the more we get into this,
the more creative we can become.
Connie: And like you said, the more people that come on board
with their expertise
so you’re not
doing it alone. The other thing
you had mentioned was
making the community not only attractive to people who may have visited or whatever,
but having it
serve the
individual needs of each person like the sensory needs, like
parks, and -
Liz: Well, yes, that's what I'm saying, I would like to see it have
a recreation piece as well
and
it's just exactly the same kind of community that you would have for a normally developing
population,
you know, we --
you see this more back East, where the population is more dense, than you do here,
because here we've got,
you know, this sparse population and lots of land,
and so we’re spread out all over the place
but,
you know that --
that is changing because community services are more difficult to provide
to urban sprawl,
you know, and that's why planners, city planners,
are trying to
tighten that up
and --
and put a stronger population density into a smaller area.
Roger: So are there good models, some good models, out there?
Liz: You know, I have not personally found any,
but I’ve heard of one in California,
and I've heard of one, now, in Austin that’s starting up,
and you know we're just in the very beginning stages
of this:
no ground has been broken.
And so
that is something that remains
to be seen and explored.
Roger: So we’re looking for ideas. Liz: That's correct
Connie: And then
talk about your vision
for compensation for those people that are
primary care givers to these, to our kids,
you had talked about
right now, the --
the system
only allows for minimal pay and minimal training.
Liz: That's correct.
You know, once again, we’re dreaming here,
but what I can see is that we have actual businesses there
that can be owned
by the individuals
that live in the community.
I mean, I visualize
a little coffee shop,
you know, people can walk,
there can be
greenbelts in this subdivision
and, I would say --
parking
I'm thinking could be more of a
centralized thing.
you know, and, and then on
more pedestrian
traffic,
even though we’re living where it's apparently colder than I ever thought.
Maybe we're going to have to have heated sidewalks, too, I don’t know.
Heated, covered sidewalks, but, you know I'm thinking, it’s easy.
Connie: How about heated golf carts? How fun would it be to see our children drive a golf cart?
Liz: Well that would be pretty fun. Connie: That would just be scary.
I don't even think we’d need any paths for that because they’ll make their own.
Connie: I think you're right. I think that’d be good.
Connie: They could check out rented golf carts,
or own one.
Liz: That's right, they could.
You know, the possibilities are unlimited.
The main thing is to get it started
and to get the community going
and have it be something that
can be --
can make them a true member of the community.
You know, if they are providing,
if they're providing a service or providing
things that the community can use,
that makes them part of the community right there,
and you know the nice thing
about
Montana
and this area
is that, first of all, we’re small enough that people can still
take ownership of each other,
so you know,
this is my neighbor: I care about him.
And
the other thing is, is that
strong streak of independence
that Montanans seem to have --
will be
admired in these individuals because they will be doing something independent,
you know, they will be doing something
to contribute,
and my child knows when he does
a job,
and does it well,
and he's proud of it,
he knows about that.
Connie: Does he still take out the garbage?
Liz: He's the most
prolific garbage taker I’ve ever seen.
Connie: Every time I take the garbage out, I think of going, “Zach could do this.”
“He would do this for me.”
Because I really don't like that job.
Liz: I don’t either.
And he does all of them.
Well, not always, but I mean,
for a long time now.
He also sets the table
and --
he used to always feed the dog, but he's gotten where he likes to, every once in a while, throw
all the dog’s water away when he does that, and I don't know,
if I'm not watching and don't know it.
So I’ve kind of taken that job partially back, which he resents.
If he catches you
doing his job of feeding the dog, he does take over.
Connie: Really? Liz: Yeah, if he catches you.
So --
but he -- he does that.
He makes his bed.
He
picks things up.
Connie: Okay, you're getting to be “Mom of the Year” before me.
Christian doesn’t do any of that stuff.
Liz: Well, Zach’s a little older than Christian.
Connie: I know, but he probably started about --
Christian does brush his teeth. I remember you saying, “How in the world do you teach these kids to brush their teeth?”
Liz: And Zach brushes his, but he doesn't quite get the tops all the time, so there’s a little problem with
that,
but I mean, you know, these are all things that --
these are the things we deal with every day, and now we’re jumping to putting them in their own house.
Give them a microwave and turn them loose. Connie: How about the time when Christian does use microwaves and --
Christian --
they don't get along.
He put his
therapeutic rice bag,
you know, the heated,
put it in the microwave,
nine minutes.
And I’m smelling something,
and it's not good,
so I go to the microwave and black smoke is billowing out,
the smell of
burnt rice.
Liz: Oh, that’s never coming out. Thank God they’re relatively cheap, right?
Connie: Right, but the kicker is, he still needed to have it.
Yeah, it was that rice bag, that
pattern, that
yeah, so he’s like trying to pick off black rice off our deck
when I threw it outside,
and he didn't understand,
so that was a whole process of
going -- he went through his little depression and grief over that,
of not understanding,
and then the only rice bags he will now accept are from my friend when she personally
makes them.
Liz: Okay, well – Connie: And I don't know why, and we haven’t figured it out.
It's just that
smell or whatever,
but that's his experience with the microwave.
Liz: Okay.
Connie: And his, uh -
now he is into --
you can imagine my reaction was the same as
the story you were visiting earlier about the milk all over.
I was a little uptight. --
And his new thing is: “Mom is feeling…”
“Mom is feeling sad?” “Mom is feeling frustrated?” “Mom is feeling mad?” “Happy, happy?”
“Mommy’s happy.”
While the microwave will never be the same.
Liz: Well, see, we got Zach going:
“No, Zach.”
“No, Zach.”
Connie: And the counting. Liz: “Not okay, not okay.”
[laughter]
Connie (mimicking Zach): “That is not okay.”
Liz: “Not okay.”
Yes.
And what else does he say? I mean he picks up everything that he's ever heard,
you know, not just from me but from whomever, which is not always good.
If it’s bad, it came from somebody else,
because I am going to be “Mother of the Year.”
[laughter]
But anyway,
He, uh -
yeah, he comes up with lots of things like:
“Not funny!”
“Be quiet now!”
[laughter]
Of course you cannot be laughing when you’re mad.
Ruins the whole deal.
Connie: Yeah, well you know, I think that people would probably look at you, Liz, and think
you’ve got a lot of struggles, but you keep it together. And I know it's not easy, but
one thing I've always looked to you for, and you’re not getting “Mother of the Year” above me, but just
the mentor, because we moms have to stick together, is
your ability to look at a situation from a --
kind of a --
not serious, but a --
kind of a --
Roger: Twisted. Connie: Yeah, twisted. Liz: Twisted sisters. Connie: Twisted sisters is what we are. [laughter]
Connie: But maybe some advice to moms,
you were talking about the milk all over the kitchen.
Liz: You know, I’ve got to tell you, if you cannot laugh about this stuff, you will die, that’s just the
bottom line.
Now I firmly believe this
and this has nothing to do with disabilities or anything else:
I believe that every single person
in this world
kind of receives the kind of life that they expect to receive.
And I mean, and,
the reason I say that is because your outlook on what happens
is what makes it a good or a bad thing.
Connie: That’s a good point.
Liz: You know, the thing that I see,
the people that have the disabilities
are the ones who are suffering,
you know. People come up to me and say,
“Oh, your son has Autism.”
“That must be really hard for you.” And I’m going,
“It's really hard for him.”
I can handle it,
you know,
I'm --
it’s not about me, it’s about him,
but yes, I think if,
you know, you find humor --
How do you, how do you deal with death?
You laugh about the good times that you had with that person,
you know, that's, that's how I always dealt with it, and it makes it bearable.
Humor makes everything bearable. Connie: Well, yeah, we had, it could have been, a serious situation with
one of our dear friends, yours and my mutual friend, you’ll know who it is after I tell you. Maybe
you know about it,
but I called her and she said,
“You’re not gonna believe what I just did.” --
and I don't know why, because we don’t visit very often, so
it was like we're on the same wavelength --
she had just taken
all of her sons
anti-seizure
instead of her vitamins
in the morning.
Liz: Oh, whoa
Connie: That’s what I thought. Well here's the deal, the good part,
she called the doctor and said, ”I took a handful of anti-seizure
medicine;
my vitamins are still lying there.
He said, “Shouldn't be a problem.”
And
she said she wasn’t hungry all day.
Liz: Ahh, diet pills.
If she drops twenty pounds, I’m reporting her.
Liz: Yeah, that's right. Connie: She said it was good,
didn't feel anything except wasn’t hungry, couldn’t eat all day.
So if we notice her losing weight --
Liz: All right, now we’re on it.
And the kid gets the stinking vitamins, right? [laughter]
Connie: They'll be healthy. Liz: That’s right, and regular.
Connie: I,
I find parents who have typical children
looking at me like
“Why are you laughing over that?”
It's funny, think about it.
You know,
we are going Mach 5.
We find ourselves doing things like
instead of putting the Ovaltine in the milk,
pouring the milk into the Ovaltine box.
Liz: Oh listen, all my neighbors laugh at me -- that have normally developing children.
I mean, we went on the casein-free/gluten-free diet
because that was going to protect my child
from Autism, remember? That was one of the cures.
So I threw everything that had any wheat or casein in it --
wish I had kept the casein
after
the other day --
but anyway I -
[laughter]
But anyway I threw all that away,
and I --
went to the health food store and spent hundreds of dollars
and, and
I’m making everything. right?
Tastes horrible.
God, tastes awful. I don't think you can even get it down.
But anyway,
And the bread, and I had the heavy-duty bread maker.
Ruined that. This is like glue and,
it's terrible,
so anyway,
we’re doing this and I'm like, “I don’t see any change, do you?” Anyway, about two months later,
I’m at Bunko with my next-door neighbor
and she starts telling everybody
about --
yelling at her kids
for getting into the fruit snacks
and putting the papers all over the,
you know, kitchen floor. And they’re going, “I didn’t do it. I didn’t do it. Wasn’t me.“
And she's going,
and this keeps happening, and she's
home from work one day. She’s ironing
and the front door opens --
“pitter-patter, pitter-patter”
In comes Zach and he’s
little, you know,
when this happened. Climbs up on the cabinet,
opens the cabinet,
climbs on the counter, opens the cabinet,
gets the fruit snacks out,
starts eating them,
and she said, “Hi, Zach.”
And heart attack, you know, he throws
and he jumps down and runs out.
So he’s been going over and eating at her house while we’ve been on the casein-free/gluten-free diet.
[laughter]
And so I’m wondering why I don’t see any change.
Connie: Yeah, but
you have to go through that. Our
experience with the gluten/casein-free made Christian a little more Autistic
because he used to eat French fries from everywhere:
McDonalds, Burger King.
But then we found out, as you probably did, the only one guaranteed is McDonald’s. Liz: That's right.
I've got a deep fat frier.
Connie: You know what, we're thinking about doing that because it’s like breaking us now. McDonald’s French fries are up to two bucks
for a large and he has to have one every day. Liz: Don’t bother. I donated mine a long time ago.
Connie: It doesn’t work?
Liz: Well about that --
Yeah, I got the one that “Bon Appetit” said everybody had to have.
I don’t mess around with this stuff.
Connie: I think you could save other people lots of money.
Liz: That's right, they could just get my stuff after I’ve discovered it’s worthless.
Connie: You could have a yard sale,
all the stuff that didn't work. Liz: Or we could just trade it. Connie: We should, trade it back and forth.
Liz: That would save us some money. Roger: Those who are just starting –- Liz: That’s correct.
Connie: Yeah, we could do that,
like a barter system. Liz: Of course, you have to be careful what it is that you trade, you see, because, you know,
I got rid of my, I gave away my monitor that we had for Zach when we were
doing the
A.B.A thing,
and then he went down and ate a set of magnets, and had to have major surgery, so I decided I had to get another one to
see what he was eating and record it.
Saves us time. Connie: Wasn’t Norm in the same room when he decided that maybe shirts should
be on the menu?
Liz: I think so. Connie: But he didn’t see
him eat his shirt?
Liz: Yeah. Connie: Was that on film?
Liz: Yes.
Yeah.
And you don’t want to know about when it came out. Connie: She’s pulling the shirt out.
Liz: Oh yeah. Connie: But the school didn’t know anything was wrong. Liz: No, school didn’t know anything was wrong.
Connie: No, he was just loud and obnoxious. [laughter]
Liz: That's right.
Well, I will tell you; now, I will tell you this,
Deb Goodell,
who is a teacher
for District 2,
did one of the most fabulous jobs
helping my child of anybody in the school district, honestly.
Connie: You find those pearls along the way. Liz: She is one, let me tell you. She had a cooking
class
during the years that Zachary was with her.
She actually decided that, you know,
the kids needed to try to cook some basic things.
You know, imagine that,
teaching them something that they can use to function everyday.
So anyway, she was teaching them how to make simple things,
and this is how we learned how to make a hot dog,
even though we had to learn how to adjust the time
depending on the microwave and the hot dog,
but she --
would make
different things and have them help make it,
and then encourage, but not force, everybody to try
whatever they’d make.
She says Zach was the best one
in the class on trying.
And so
ever since then,
you know, it used to be the only things acceptable on our menu were
pizza with no
red sauce, just cheese, and
Macaroni and cheese.
Connie: You would try to make those then? Liz: Yes, I’d make them.
Or I could also order them that way, too.
Connie: You found a place?
Liz: Well I just said “leave the red sauce off.”
You know so,
anyway,
and then we had, because we don’t want any nutritional value in this pizza,
just give us the bread and the cheese.
[laughter]
And
hot dogs.
What else? Macaroni and cheese and French fries and chicken nuggets from McDonald’s.
Lovely stuff.
Anyway, that was it.
And Cheez-its.
Cheez-its were our mainstay.
Roger: Wow, well, we're just about out of time. Liz: Okay.
Roger: This is very good. We should do this some more.
Connie: Liz has got a million stories.
Roger: Oh yeah, I think this could be a hit.
Connie: Yeah, a hit.
“Life with Liz”
Liz: No --
Roger: “Conversations”
Liz: “As the Autism Turns” [laughter]
Connie: And turns and turns. Liz: And turns and turns, yes.
But honestly, I mean, that
Deb Goodell really changed --
Because Zach will eat anything now except for salad, or anything, anything
really healthy. Connie: Maybe that what- Roger: Well, we’re going to say goodnight.
Thanks everybody. Liz: Goodnight. Connie: But I have more to say, Roger! Roger: I know, but we’ll have to save it for another time. Connie: Okay. Roger: So long.