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Carol: Lainie can certainly become
frustrated when she's not able to do something or if
something doesn't go her way.
And she has never been a person who strikes out at
others.
She doesn't become aggressive toward other
people.
But she will turn that aggression on herself.
♪♪
Carol: Lainie will develop a strong relationship,
usually it's reciprocal because of Lainie.
Lainie is very likeable.
You have a birthday coming up?
Lainie: Yeah, I'm going to have a party.
How old are you going to be?
I'm going to be 47.
Good job.
I'm going to be 47.
Carol: Lainie had kind of a rough start to life.
When she was five hours old she had her first
seizure and I could hear the nurses or people
running in the halls and I didn't know what was going
on.
But I just had a sense that something was wrong
with my baby.
And then in the morning they came in and said that
they didn't think she would live.
We were told she would probably never walk, never
talk, maybe never roll over.
And she did still have seizures.
But then they stopped.
And she did crawl, and she did stand up, and she did
walk at the normal time.
But cognitively we could see there was a delay.
♪♪
Carol: When she was five and using the
term transitioning from preschool to a grade
school is when she was diagnosed with autism.
Carol: When Lainie's sister went to college my
husband and I decided this might be the time to help
Lainie transition into a different setting.
People would tell us when your son or daughter is in
public school you don't have a clue as to how good
you've got it because once you transition into
adulthood and all of a sudden the services either
are different, have fallen away, it's a shock.
Carol: When we decided that it would be in our
and Lainie's best interest to find a residential
place for her to live, which sure as heck wasn't
her idea, it was challenging.
You can't play trial and error because you're
playing with her life.
Hawk: She lives on campus and she has three
roommates.
She gets along with them.
She knows all their names, knows most of their
parents' names.
On campus we'll typically have two AM staff, two PM
staff and an overnight staff.
So she's constantly getting that round the
clock care.
Dorcas: I've worked with Lainie now for eight
years.
And I've come to understand Lainie.
And I don't see her as a person with disability.
I treat her like any other person.
Dorcas: For Lainie, transitioning from one
place to another, it may take her some time before
it sinks in for her to transition.
But once she gets to that point she will go.
You don't want to force her.
We can't go because I put the phone on and she hears
me do it.
We are just going to do some quick --
We can't work,
I can't work because my mom, she wanted me to
ask Angie a question.
Dorcas: When Lainie goes to work, most of the time
she vacuums in the main office here at Balance
Autism and she also wipes down the windows.
Hawk: I feel like sometimes she maybe
doesn't get enough credit.
She's really smart and she knows what's going on
around her.
At the end of the day she's a person too.
I feel like that gets lost sometimes.
Yeah, she has autism, but she has this personality,
this very big personality.
Sure we can do that together, we can cooperate
together.
That sounds like a wonderful idea.
Angela: Lainie is very social.
Once she gets to know you and trust you and has made
a connection with you she is very affectionate.
She gives the best hugs in the world.
I would say Lainie has excellent social skills
overall.
She has lived in the same home for 24 years with
three other women.
Those ladies are very involved in going to the
movies, out to eat.
They have been volunteering at Blank Park
Zoo and have enjoyed that.
Angie said she loves me.
Hawk: Family is super important to Lainie.
She is constantly talking about them.
Carol: She loves her sister Angie so much.
Angie is married and has two children.
And Lainie loves her niece and her nephew and her
brother-in-law.
♪♪
Angie and Chris can come.
How does that make you feel?
It makes me excited.
Carol: Lainie's dad died more than 11 years ago.
So that was very difficult for her not to have her
dad in her life anymore.
♪♪
Carol: When she comes here and spends the
day or even overnight or when it's time to return
to her home, in the over 25 years that she has no
longer lived with me, it's never easy.
She got me another CD and it's another --
Is that CD in your bag?
Yeah, but can you tell her you found it?
It's the other one.
Carol: The transition from my car into where she
lives is extremely difficult.
I know that once she is back in the routine she's
okay.
She likes where she is.
It used to be something I totally dreaded was having
to take her back and see her almost despair at
leaving me.
How are you doing?
I have to go visit Angie and I don't like it here.
My birthday.
You tell him.
Today is my birthday.
What?
It is?
I am not going to be here on this horrible day.
Angie is having, I have to have a picnic with Angie.
Carol: When I took my cell phone to record Lainie
going to the dentist she really didn't pay any
attention to me at all.
She was so focused on not opening her mouth, she
didn't care what I was doing.
Can we see you teeth?
We can't see them when your lips are closed.
Carol: Having a health care professional touch
her, make her do things that she doesn't want to
do probably will continue to be a struggle.
Carol: But because we see Dr. Jacobson who has the
patience and genuine respect for Lainie and
Lainie's inability to behave like any other
patient, it makes that trip so much easier.
How about one more look here?
Carol: In her mid-40's, another thing that I think
about as a young woman is going through
menopause.
Hot flashes, will that be an issue for Lainie?
As she goes on into her 50's, her hair is graying
and Angie and I used to joke and say Lainie is
never going to be gray.
Carol: What comes in the 60's?
What comes when I'm not here?
Which is certainly something that I think we
all think about.
Carol: And I --
-- started saying something to Lainie
about death.
♪♪
Carol: How will she incorporate that into
her life when my red car that she still calls a
Jeep, which it is not, doesn't come up the
driveway anymore?
How will she figure that out?
And I'm not going to be there to help --
♪♪
Carol: -- with that.
Do you want to show us what's inside your purse?
Well sure I could do that.
Carol: I think it's important to help others
feel comfortable talking with your child with a
disability, the acceptance is something that is so
important to all of us.
♪♪
This program is part of the Move To Include
Initiative made possible with support from the
Corporation for Public Broadcasting, a private
corporation funded by the American people.
♪♪
The Max and Helen Guernsey Charitable
Foundation, in support of educational programming on
statewide Iowa PBS.
♪♪