Original subtitles

I'd also say, I'd be interested in what conditions would be best for

you, whether you'd like the children to be present or whether you'd prefer them-

Yeah. I had prepared for that.

Yeah.

And so my mom's going to be grandma today too.

Okay. Wow.

That if I feel it's...

Some things when I talk about the kids, I probably would feel more comfortable if-

Mommy.

Sweetie, why don't you sit on the chair, okay?

Okay.

All right. Sit down. All the way. There you go.

Can you hold this on your lap?

Yeah.

And sit real quiet?

Yeah.

Thank you.

I can do that.

Good boy.

So, you could make decision about that.

Yeah. I feel comfortable doing it.

Yeah.

Well, actually, this all started about, having to do

with my professional paper, which is a requirement for my

graduation-

Yeah

... from this school. And I'm working with Jennifer on that.

And,

as I said, I've just always been-

...

wondering how people, I know, I don't really know, but

I

wonder how people cope with not just the kind of difficulties with kids,

but all kinds of tragedies in their life, but particularly with children with

disabilities. And,

I'm kind of

trying to find out how people make meaning of their lives-

Mm

... when something catastrophic happens.

Yeah.

Michael now has some understanding of Diane's agenda for the

meeting.

This agenda is to go some way toward addressing the questions:

How do people cope with tragedy when this relates to disability in the

lives of children?

How do people make meaning of their lives when something catastrophic

happens?

At this point, Michael makes several assumptions.

One, he assumes that these are questions that Diane has been

struggling with for a considerable period of time, and that they

become most pressing for her during and immediately following

periods of crisis. Two, he

assumes that a review of Diane's responses to the various

crises that she has been through would provide some important

answers to these questions.

Three, he assumes that a review of developments in Diane's

life subsequent to such crises will provide some

account of how these answers are being played out in her life in

particular ways.

Four,

he assumes that to engage Diane in some reflection on her

responses to such crises and on subsequent developments in

her life will contribute to possibilities for her to

extend on those developments that she judges to be preferred,

and, as well, will assist her to articulate,

acknowledge, and embrace her own knowledgeableness.

In order to explore these assumptions, Michael decides to ask

Diane to tell him about a recent crisis, and then to

talk about her response to this crisis.

During this discussion, Diane becomes an audience to certain

developments in her life, not just providing an account of the

events as they unfold, but also attributing meaning to these

events, what they reflect about her purposes, about

what she might value about herself, and so on.

Catastrophic happens.

Yeah.

And in talking to Jennifer,

especially it was like the beginning of the school year in September, I was really

struggling with a lot of the same questions myself.

It was becoming real difficult for me.

I've been separated for a year from my husband.

So for one year.

A little over a year, and we're going to be divorced.

Right.

And just struggling with all the things about being a single parent and

trying to remake my life with the

difficulties of having any children, but just the particular

difficulties that I

have with my boys.

Yeah.

And,

just trying to

figure out where to go from here.

Right.

I'm feeling a lot better now than I was at that time.

School's real absorbing, so I get real absorbed in that and-

And that's been helpful?

Yes.

How has that been helpful? The absorbing-

It's been helpful. It's kind of been a container for me.

It's given me a lot of structure to know,

even though, I'd prefer to do something else on the weekend than write a paper,

I know that's what I have to do, so I just do it, and it's been really

better for me in that way. So I'm a little anxious about school being over.

Yeah.

Because I no longer have that kind of a structure, and I have to

figure out where to go from there-

Right

... with me, with the kids, how we manage.

Right. And I understand that you've wound up being primarily

responsible for the children. Is that right?

They live with me.

They live with you?

Yeah. They live with me. They visit their dad every other weekend.

Right. Every other weekend.

Every other weekend, and one night during the week, they stay overnight from-

Right

... after dinner till before breakfast.

They spend the night, and he brings them back up early in the morning.

Right.

And I have help at home.

Right.

So that really helps me.

Right.

But the major responsibility for parenting would be on your shoulders.

Right.

Would that be correct?

The decisions, and those decisions really, a lot of times, were mine

anyway, just about schooling and-

Yeah

... doctors and surgeries and-

Yeah

... therapies and all those things that happen.

Yeah.

Yeah.

Yeah.

Just primarily it's mine.

Okay. You mentioned a little bit about

how you had this bit of a crisis around meaning.

Was that-

Mm-hmm.

Is that correct? Can you tell me a little bit about what that crisis was

about?

I guess it's something that kind of comes and goes,

and I think that a lot of it had to do, was around Andrew's

surgery. He had surgery this summer.

Yeah.

And, it was horrible.

Both of his hips were dislocated. His bones had to be

broken and reset, and he was in a body cast for six weeks, and

I just felt totally overwhelmed. He was in a lot of pain, and it went

on, even when he was out of the cast, the difficulties, his

discomfort went on for probably about five months.

It's just been the last couple of months that he's been comfortable again.

Yeah.

And I was feeling just really overwhelmed

with-With Andrew and how I

was going to continue to take care of him, because physically it's getting hard.

Yeah.

And Matthew, who's got lots and lots and lots of energy, and-

Yeah

...

and his own

uniqueness.

Yay.

And,

I just felt,

how was I going to be able to get through

the day, no less the years? And wondering too, and also

struggling with how I was going to remake my own life.

I'd love to have a relationship again someday, and

I'm overwhelmed with, well, would anybody want to come into this situation?

And

so it's feeling kind of

depressed around that.

Yeah. Okay. So,

hold on. Can I just check now with Andrew? How's Andrew now?

His pain, is that...

Well, he still has some discomfort, like when I dress him in the morning.

If I move his hips together too fast or

even just in the morning because he's pretty stiff-

Right

... he cries a little bit, but it doesn't go on for a long time.

And he'll have periods of time where he cries, where he's probably too tired from

the exercise. Matthew, can you sit down? Can you put your bottom on the chair?

I think your microphone's gone.

Microphone.

Yeah, just sit still for a little while, sweetheart. You can look at your book.

Okay?

No, read my book.

Okay.

Excuse me.

What was I saying? Oh.

But Andrew, there's always something going on.

I mean, he has a seizure disorder, and sometimes lately, his seizures have been a

little more intense.

He cries at night, and sometimes I wonder, I

don't know what it's from. It seems to me that it's because it's the only way he

has of expressing himself, and

he doesn't want to be in bed.

Mm.

It's really hard for me. He'll just cry at night, sometimes for an hour or

so.

Mm.

The hardest thing is not knowing what's troubling him when something's

bothering him because he can't tell me.

Yeah.

Overall, his health has been fairly good, knock on wood.

And

now that that nightmare of a surgery is behind me, I can say I'm glad we did it,

but it was just horrible.

Mm.

But he seems to be more comfortable now.

And

can he look forward to being

free of surgery from this point on, or is it-

Necessarily.

... not necessarily.

No, because there's the likelihood that his hips could become

dislocated again.

Right.

I mean, we really put a lot of effort, time, and

money into the idea of getting him having the excellent

follow-up physical therapy, and we found an excellent therapist who's working with

him five days a week in hopes that he'll gain the muscle strength to

start to do some standing, because really, that would be his best chances

of-

Of getting-

... of keeping his hips in place. But-

Yeah

... there's always that possibility.

He's only seven, and lots of kids have it done again

later in their years.

You said we.

Do you work with a team?

No, I guess I was still

talking about my husband. Yeah.

Right.

I mean, because he is involved and he keeps in helping to pay for these things, so

that's important. And we feel the same way about Andrew and his

care. We try to have a cooperative spirit about the

kids and what they need.

Okay.

So.

And that teamwork survived the separation?

The teamwork and the relationship?

Pretty good. Yeah. I do most of the, like

95% of the research, and I tell him what I found out and-

Right

... but

he certainly was very involved with Andrew in the hospital when he was there for

the surgery and there. So that's been our primary

goal, is to keep that spirit intact.

Right.

Absolutely essential.

Yeah.

We both know that we need

each other for that, so we really try to work hard.

And I guess I do feel like I have a team anyway.

I mean, between

the therapists and Andrew's teachers and

my parents and

his doctors, I mean, it really is a

community.

Yeah. And that's been important.

It's been essential.

Yeah.

Yeah.

Yeah.

You mentioned this crisis that you went through. That was around Christmas, was it?

Or...

Well, it was before then, actually.

It was probably summer through

maybe

October or something.

Yeah. Right. You said something about getting absorbed

worked, in a sense.

What?

Getting absorbed in the work.

In schoolwork?

Yeah. That helped in some way?

It did, yeah. At the beginning, when school started, I was having a hard time

getting back into it because of just so feeling so poorly.

Yeah.

And

it does. It gives me that sense of purpose-

Yeah

... that's really important.

Important. Yeah.

Yeah.

Can I go?

Soon you can go.

So-

What?

I'll make a couple of notes here, if that's okay.

Sure.

And come back to

them.

What?

What's that?

What is it?

Oh, wow. There's some treats.

Yeah.

They're not treats. They're snacks.

They're snacks. Okay.

Snacks. Okay. I'm sorry. Treats means something else.

Treats like sweets or something.

Snacks are c******s.

Right. Okay. So they're snacks.

Yeah.

Yeah. So,

getting absorbed in the work gave that sense of purpose that

was really important to you.

How would you name the purpose? I mean, what-

What do you want?

What would I name it?

Please.

Well... Oh, your water just spilled.

Oh, well.

Well.

Must be jet lag.

Blame it on jet lag. A few days after you've been traveling, yeah, it's-

What's more given me is that sense of

self-esteem, keeping that intact and feeling like I've really

accomplished something. It's always been important to me.

Yeah.

And with kids, sometimes at

the end of the day it's like, "Well, what did I accomplish?"

Yeah.

And

particularly since it's been so stressful the last year since my husband moved out.

Actually, it was stressful before he moved out, too.

I tell you, I could have a bad day, but I'd get a paper back in the mail with an A

on it, and I would feel

like everything was fine.

So, I guess it was really important to have that.

It was that external kind of validation that I have-

Right

... that I can sit down at my computer and turn out a paper that's-

Yeah

... creative. It's the creativity, I think-

Right

... that's really important.

So you could reflect a bit on that, and it

gave you that sense of self-esteem, and-

Yes.

Yeah. So what sorts of things would you be valuing yourself for when

you were able to reflect on this, and-

I think

one thing is the discipline that I had to sit down and

do this.

Yeah.

To carve out the time for myself to do that.

Right.

And-

So it's discipline. Yeah.

And the creativity.

Yeah.

And my intellectual capabilities, that they're still intact in spite of having

given birth to two children, which I sometimes doubted whether it was

there.

Okay. So it put you back in touch with that.

Yeah.

Yeah.

Yeah.

Mommy?

So it's very rewarding for you personally.

Very rewarding and-

Mommy

... excuse me. You want me to help with that?

Yeah.

Okay. All you have to do is take these out and open them up.

Put your hand in there. See? There's c******s, and cheese, and apple,

and purple grape juice.

Okay.

Okay. We're all set.

Your question, I'm sorry.

I was thinking about the c******s, and the cheese-

Oh

... and the grapefruit.

Would you like some?

No, it's okay.

Here's a

c*****r.

Yeah. I wouldn't mind a c*****r. Can I have a c*****r?

Here's the blue grape juice. Want to offer Michael a c*****r?

Go ahead.

Who wants this?

Thanks.

Here you go.

Are these good c******s?

Yeah. They're c******s. Thank you.

Mm.

You're welcome.

Mm. They taste like treats to me.

Yeah.

Depends on your perspective.

I can't move a little bit.

You can't move? You're too cuddly. There you go.

So just generally-

I can't move. I can't.

It's squishy.

I think, too, gave me the sense of

esteem that was

really being eroded in my marriage.

Mm-hmm.

Right.

Just

feeling pretty terrible about the whole situation, about myself, not getting

any strokes any longer. And so it was really a

nice external source.

Right.

It validated what I felt

was there and just had to tap into again.

Right. So it's a matter of sort of reclaiming some things-

Mm-hmm

... that had really

been lost, or not lost, but had been a bit buried by-

Mm-hmm

... a whole range of experiences.

And I think, too, a sense of a goal and working towards and accomplishing

it.

Yeah.

With Andrew, I've had so many

years of

hope. And then I would put my heart and soul into trying to do something

about it-

Mm-hmm

... find a new therapy or whatever it was, and then

have it ultimately not make that much difference.

Mm-hmm.

It's been very disheartening-

Mm-hmm

... and very frustrating. So it was an opportunity-

Dad

... to do something that had-

Yeah

... a goal and that I could accomplish.

Oh.

At this point, Diane provides information about her relationship

with hope.

Hope has been a highly significant and influential force in her

life, one that has inspired many efforts to ameliorate

the very considerable problems that Andrew experiences.

Hope has also contributed to a great deal of disheartenment

and frustration for Diane. However, the reference to the

goal "that I could accomplish" suggests that

Diane is in the process of changing her relationship to hope,

and that because of this, she may be less vulnerable to

demoralization.

Michael assumes that this is a particularly significant

development. Although hope, when joined with a commitment,

is to be highly valued, it is nonetheless a fraught

issue for families struggling with disabilities.

As Diane's comments suggest, it can be a very hard

task master.

However, this fact does not mean that hope should be discriminated

against.

It is not something to encourage persons to say goodbye

to and to grieve the loss of, as such action is

invariably disheartening. It is far more important

to assist persons to maintain their hope, but at the same

time, to encourage them to review their changing

relationship with hope, in a way, mitigates

demoralization and frustration.

Here, Michael assumes that in revising her relationship to

hope, Diane is also revising her relationship with

herself in ways that she experiences to be positive.

Further, he assumes that a fuller articulation of

this will contribute further to the preferred developments in

Diane's life.This assumption relates to his view

about the real effects of a recounting of the developments in

one's life, of one's private story.

He believes this process to be actually constitutive

of one's life.

So it was an opportunity to do something that had-

Yeah

... a goal and that I could accomplish.

So that process, of actually

what believing something could be done that was going

to make a world of difference, and then pursuing that with therapists, but

finding out that it didn't work quite how you wanted or hoped it would be, is a

pretty demoralizing experience.

Yeah.

It's

terrible, but you see, I always

have that hope. It's like I fall down, I dust myself off-

Yeah

... and I pick myself... And I sometimes withdraw for a while from Andrew and

everything with him. I just have to take some time out, and then I

kind of get rejuvenated again. But it's always dangerous, I know, to have that

hope, because then you fall harder.

Yeah.

And I do that a lot.

I guess hope's important, but I guess

the issue is about the extent to which it

dominates in

terms of what you're doing and how you're generally

approaching things. There's something...

So been a shift with that, like you've got a different sort of relationship with

hope?

You've mentioned that

you did have this low time, but you actually came out of that.

Being absorbed in your work helped a lot.

I was wondering if there were some other things as well that changed for you.

How I came out of that period of time?

Yeah.

Well, medication helped, too.

Yeah.

Antidepressant medication.

Yeah.

Yeah. That helped a lot.

And I think-

I was thinking... Sorry.

No, go ahead.

Well, I was thinking-

That's not the answer you're looking for, I'm sure, drugs.

No, I'm not looking for any particular answer.

Yeah.

I'm interested in what you're interested in talking about.

Right.

And-

What else changed during that time

... I'm just wondering whether your relationship to hope changed as well.

My relationship to hope.

Yeah.

I don't know. It's like I hang on to hope because it's what

gives me

the motivation to get up and go on every day.

Sure. Yeah, I'm sure. I wasn't thinking that it wasn't a helpful force in your

life.

How do you mean? I'm trying to imagine how my relationship with it would

change.

I think my relationship with

hope in relation to Andrew has changed.

Yeah. You told me about that.

For the most part, my hopes for him since he was born have changed

dramatically.

Yeah.

When

he was born, I had hoped that he would overcome

everything that he had.

Yeah.

He was devastatingly ill as a newborn.

Yeah.

As a premature baby, and nobody thought he would live till the next day.

And

so I had hoped that this little boy was so strong that he could keep

on overcoming all these

horrible obstacles.

Yeah.

And physically, he did. He survived, and that was really miraculous.

And I had different hopes all the time.

Then I hoped that he'd be able to say "Mommy" someday.

Then I hoped that he'd be able to sit up. My hopes were kept being lowered.

Right.

And my

relationship with hope became quite rejuvenated

about three years ago, when I heard about a program

not far, in a small town about 100 miles from here, that was

teaching kids like Andrew how to sit and stand and walk.

Mm.

And I was really afraid of hope. I was

real cautious about it because it was so painful.

Yeah.

But I threw myself into it, and we moved up there for a time

and got Andrew in the program and got the program going down

here. So in that sense, it helped a lot of other people.

But Andrew didn't make much progress in it.

Mm.

So once again, my

hopes became more that he would be pain-free.

Yeah.

And that's why we did the surgery. We put him in pain, but with the ultimate

goal of him...

I think my hope for Andrew is that he's

content and at peace.

Yeah. Mm.

And that's a hope I have to hang on to.

Yeah.

Because that's the meaning in his life.

Yeah. Well, I think hope's really important.

I wasn't wanting to cast any doubt on it.

No, I know.

But I was thinking about your relationship with it.

I'm just thinking about how it's changed, yeah.

And I'm just wondering whether or not

coming out of this

downtime that you had, whether you'd come out of it with a different sort of

relationship to hope,

and what you went through.

Yeah.

Well, I feel hopeful once again.

Yeah.

Very hopeful.

Yeah.

For myself.

Yeah.

For

Matthew and I.

Yeah.

I think it's always in question about Andrew.

Yeah.

But

I have a lot of hope about this little guy.

Yeah.

He makes my heart sing.

And he keeps me up at night.

Does he?

He likes to sleep with his mom, so.

Yeah, you're back, sweetie.

And-And I'm starting to get hope about

my own life.

Yeah.

My social life's gotten somewhat better, but-

That's the sort of thing I was thinking of.

Yeah. I

really

am more in touch with hope again.

So, you're allocating some of it to yourself in a way, more so.

Yes, I'm trying to

do that.

Yeah.

Okay. All right. How did you achieve that?

Which part?

To allocate some of that-

Myself?

... hope to yourself. Yeah.

Oh, I think it was a question of survival.

Was it?

Yeah.

Yeah.

That I knew that there were certain things that I had to do for myself or I wasn't

going to survive for these boys.

Right.

One of the things that's been helpful to me is...

It's hard. I act like it's already done, but accepting my limits.

Yeah.

I always wanted to be able to do so much, and knowing that when

I set out to do so much, I

think that's why I fell so hard, and

when I go through a crisis, is because

it's hard for me to accept that

I will not be able to care for Andrew in my home for my whole

life.

Right.

That I'm not going to be able to lift him soon.

Yeah.

Not only just physically, but emotionally.

Mm.

That I can't do this by myself.

Mm.

And that I keep on having to get more help, and also to allow myself to have some

time away.

Right.

So this hope

was extending you past your limits in some way, but now-

Yes. Absolutely. That's absolutely right.

It was extending me beyond my limits. Oh my goodness.

That's a nasty cough.

That's a nasty cough, hmm?

Yeah. Okay, girl.

Yeah, it was. It was

almost

like the hope had supernatural powers-

Yeah

...

and

was taking me beyond the place where I could really be.

Right.

That's hard to accept, because I want to be able to do everything. Excellent.

But that's something that's happened over the last

months,

in a sense.

It's a process, I have to say. Yeah.

Right.

It's been an ongoing process.

Yeah.

But definitely-

Would you say-

... more recently. Yeah.

More recent. Would you say it's a positive development, that hope doesn't extend

you past your limits so much?

I think so, because I think it's real. It's real for me. It's real life.

Okay. So there are two major changes in your relationship with

hope.

One of them is that it doesn't extend you past your limits so much,

and the other one is that you're allocating some of it to yourself.

Is that right?

Yeah.

Okay.

How

are those snacks going, hey?

Good.

Are they good?

They're good.

Want to try a snack?

Pretty good.

You

have some apple.

You have some apple, okay?

He'll feed you whether you want to or not.

Here you go.

Thank you very much.

Thank you. That's for-

Thank you.

Okay. Can I eat it in a minute? Do I have to eat it straight away, or can I-

Yeah.

I can wait.

I can wait?

No, eat it.

I have to eat it now?

You can talk while you eat.

A bit hard to talk while I'm eating.

I'll just put it here, and I'll eat it before we finish up today. Okay?

Matthew.

Yeah.

Eat it, please.

Do you like apples?

Yeah, it's good.

Matthew.

Is an apple a treat or a snack?

It's an apple. It's a snack.

It's a snack. Okay.

It's a snack.

Matthew, honey. One second. A little bit later. We're just talking to Mommy, okay?

Okay.

Thank you.

Okay.

So,

are we talking about what's interesting to you to talk about or-

Yeah, it is.

What's interesting about talking about this?

Because we started off a bit of a conversation, and-

Yeah. Well, it's

interesting, talking about hope,

because it's kind of like a theme-

Yeah

... in my life.

Yeah.

And recognizing when hope is good and when it can take me beyond the

place, and that it

can be for myself, too.

Yeah.

I didn't think of it in terms of my

hope being for myself.

Right. Was it important to think about it like that?

Is that a helpful way of thinking about it?

Yeah.

Because I've invested so much time in

hoping that the children will be okay, hoping that my marriage would work out,

hoping that everything, and-

Yeah

... having to let go of those hopes is really important, and so

I guess it is kind of shifting my relationship to hope.

Yeah.

Having the same amount of hope, but just reallocating it.

I think it's a really big achievement for people to shift their

relationship to hope, particularly if

they've been in the sort of situation that you've been in, in relation to the

children and the marriage, and I guess

I understand from talking to women that it's a particularly

big achievement for women, because

they get so recruited into hoping for everybody else, and-

Yeah

... and

not that that's a negative

trait. I guess it's a really positive one, but I guess-

I'm glad I have it. I don't think of it as negative.

Yeah. But I guess

the fact that you're not excluded from this now is a

really interesting development. Yeah.

And

we started off by-You talked a little bit about how you got interested in how

people cope with things.

Mm-hmm.

And,

I'm getting to find out a bit about how you've coped.

What's working for you.

Yeah.

And,

so I guess that's partly why I've been asking the questions I've been asking.

You mentioned some other things about...

Can I say, has the teamwork changed a bit also in the

last-

The whole team or the team between their dad and I?

Well,

the-

Michael initiates an exploration of other factors that might

have contributed to these preferred developments in Diane's life.

At first, he's curious to know how these developments might

have affected Diane's interactions with others, and

then how these interactions might have affected the more personal

developments that she has been articulating.

This exploration is informed by Michael's understanding that the

personal stories of people's lives, their stories of

identity, are in fact stories that are negotiated and

distributed in communities of persons and the

institutions of our culture. The conversation

drifts toward a discussion of the extent to which Diane has

engaged in a refusal to be so disciplined, a

refusal to subject herself to certain expectations of

perfection.

Michael assumes that this is a gender issue, that it is an example of

Diane protesting and breaking from the requirements of gender,

and that this refusal is being achieved in the face of many

historical and current forces that might otherwise have been quite

capturing of Diane. Thus, he believes that at some point it

would be important to introduce the possibility for a

conversation with Diane about the politics of

self-discipline and of perfection, and of hope and

responsibility for that matter, and about the politics of her

refusal.

During the discussion, a connection is forged between Diane's

changed relationship with hope and her refusal to be so

disciplined. The linking of such events is important.

This linking is critical to the achievement of a sense of the

unfolding of preferred developments across time in one's

life. This provides, for persons, a sense of their

lives-

So, this fear that someone might find out you're not perfect-

Yeah. Well-

... be isolating

... and I think to be real honest, it's a lot to do with my family and not wanting

my mom and dad to know certain things about me that are

personal.

Yeah.

Because it'll be an extra burden for them to worry about, and also just to keep

my own boundary about

who I am and keep that.

Yeah. Are you concerned that boundary's been broken today, or is it-

A little bit, yeah

... is that a concern of yours, or-

A little bit.

It is.

Yeah.

What are you concerned about?

Because this is a unique situation, to have your mom behind the screen.

Yes, it is, and it causes me some anxiety. We talked about it a little bit.

Well, I think, in regards, especially when I talked about the

medication, it's something I've never told her.

Right.

And because

it was real important that it just be my own personal thing.

Yeah.

And that I don't want to discuss it.

Right.

It's like it's my own

personal world.

Yeah.

So,

how can we tend to this concern, here today?

Like, you're concerned this could have a certain effect on your relationship with

your mom, or her interaction with you?

Well, I don't know that I'm concerned it'd have a direct, specific

effect on my relationship.

Yeah.

It's just

I think the process of exposing myself is-

Yeah

... kind of

uncomfortable.

Yeah.

Okay. If there's any way that I could attend to that, or we could attend to that

discomfort-

Maybe we could bring her in too.

Well, maybe she could come in, yeah.

Yeah.

Okay. I wonder if she could come in.

Okay.

Yeah.

Your mom's name is?

Dorothy.

Dorothy, that's right.

Yeah.

I wonder if Dorothy could come in.

Daddy.

Hi, Dorothy. Would you like to come and join us? Yeah.

Mommy, that was a great movie.

That was a great movie.

Matthew's making a great movie.

What?

It's a movie starring Matthew.

Have you seen it?

We're calling it Matthew meets Michael.

With some pirate gold.

Inside.

Better look for some agar part. Thing was on

this.

I'm really glad that you

suggested that Dorothy come in.

Mm-hmm.

Yeah. And, I guess you're interested in

Dorothy's response to this?

I am, yeah. Just maybe...

Yeah. I'd be interested in your response as well.

In response to her taking medication?

Well, what is-

No, just this whole thing.

As far as that, I have noticed that she is feeling

so much more upbeat and hopeful, and we

have spoken about it, and I'm glad if that's what's doing it.

We have seen changes-

Yeah

... with her and-

Yeah

... especially these past few weeks.

Yeah.

And it's

been feeling really good. And if it's part of her

perspective and her hope and with the medication, that's great.

You can't see me.

That's great. I

wouldn't have asked her. It's just that we

speak about it and we just want

everything so good for her.

Mommy?

I can't see.

She's very special.

Holy s**t ball, George.

I understand that.

Go away.

She's quiet.

What are you thinking about right now?

Holy s**t ball, George.

I'm just thinking that I want everything good and

wonderful for her and,

whatever process she goes through, I want for it to be good.

See.

It's all right.

Open. You try, Lily.

Come sit over here

So you've really seen your daughter go through a whole lot of things.

Absolutely.

Can you read?

Yes.

With some problems.

Give me one.

Oh, okay.

Put it down so I can see Michael's face.

So that's what you're thinking about.

Can you read a story?

Yeah. I know she's been in a lot of pain.

Thank you.

Good boy. And I've always wanted to fix it.

You can't fix all the pain.

Yeah.

Bring me the lamp.

And,

I think some of the things that she has said is not a surprise to

me. I've certainly been aware that there are times.

I just don't say it. I don't want to impinge

upon her own privacy and her own boundaries, because I do

respect. I have a great deal of respect for her as a person.

Mm-hmm.

And, I hope that whenever she

needs it, we're there for her.

Certainly.

And I certainly know that she feels open

to that.

Do you want to say anything else, Tamron, about the concerns that you had

about...

Yeah. Well, it's hard for me. It's like, I

think

what I wanted to keep-

Once upon a time.

No.

Look, I'm really aware in my relationship to you that I kind of

let you all the way in, and then sometimes put up walls.

Like that's not okay now, and I know that must be really hard for you.

Sometimes it gets a little confusing.

I know, but it's like

sometimes I guess it's just sometimes I just need that

privacy. And I think one of the reasons I was concerned about the

medication is that I didn't want to talk about it.

Like with the kids, sometimes we talk about this stuff, and you do some research on

it and stuff, and I really needed that to be, like, really private.

So that was my concern about not telling

you.

I can understand.

Not that I didn't think you suspected .

I really didn't suspect. I just thought you just have looked so good

lately. You've lost-

Those dates I had

... and I thought that was it. And I said, but to be able to do that and to go out

and you look more upbeat. We've spoken about that.

You just have more joie de vivre. It's just been

so good to see that

these past weeks. And if that's what helped it, that's great.

I send people for medication, and I find that I see

differences, and I certainly am

a believer in it, to an extent, and-

It might be part of the story

... I have no problems with that.

But it's only part of the story.

For me, it's a significant part of the story.

Not the effects of it, but just my willingness to say, "I can't do..."

I'll tell you that,

I suppose I should cease being surprised that the

world presents

these kinds of what seem like coincidences, but experiences I've

had.

I

became interested in this field as a result of having a child

who was rather profoundly r******d,

died at age four and a half.

And so,

Diane's

curiosity about how do other people cope was one of

my motivations, too. I started working with

their school, with the younger kids, after

my daughter died,

my second daughter, and

started to see how much families were needing

attention. The kids needed every

minute and every second that they were getting, but I could see how much families

were needing. And that, so instead of working directly with the

children who were handicapped or had different...

I moved into working with families also.

So I'm really quite

moved that

someone else has taken a path like this in this

work.

Yeah.

And that's had a strong influence on your professional life, too?

Well, it's

how I

got to be here.

I have been...

I never thought about that question before.

Because I don't work, in fact, most of the time with families

who have children who

have these kinds of issues. I moved more into working

with couples and people who are afraid.

And that's-

I was just coming from a sort of a position

of some personal knowledge around

Diane's situation. I don't know if there was anything about her

that struck you in particular or just sort of just coming from

your also somewhat unique position.

If there's anything...

Yes. Now that you ask me,

her

humor,

her easiness with both boys,

struck me and that's something that I had seen

and hadn't thought of until just you asked me that question about

how was it that I could do work with a

child and have children, one of them who was profoundly

handicapped. And people would say, "Oh, isn't that hard?"

And I'd go,

"Well,

yes and no.

Yes, it's just as hard as you think it is, and no, it's not, because it's

just what I do. It's just get up and now I do it." And

so

I was really touched by their

easiness and the humor.

I just wonder as to whether you have any comments about those

thoughts or reflections. I know it was a little distracting for you because you

were pretty busy.

Well, I was listening. Now I'm trying to remember what I was thinking about when I

was in there.

I was kind of smiling to myself because one of the gentlemen said something about

the experience of guilt, and I thought, "Oh, I could write a book on this."

Guilt?

It's an opportunity.

Yeah. Because letting go of some of this stuff and becoming...

And it's such a process, and it's just beginning.

Of becoming, for myself, is so hard because I think about

some of the questions were, who would be least surprised and who would be

about what would the community's voice be?

See, and I always had this community's voice in my head like,

of course, I do a fabulous job with the kids, and I know everybody thinks that's

great, but what would they think about me doing for

myself? That feels like I'm not really supposed to do that, so

it's kind of trying to let go of that and-

Yeah

... it's really hard to do.

So that-

Maybe I won't be as perfect with the kids.

Maybe I won't be so amazing with the children.

Yeah.

Honey, do you want to sit on Mom's lap? Hmm?

We're almost done, sweetie.

So is that-

I know this is hard for you.

It won't be long. You've been very good. Yeah?

And

I can understand why your mom's proud of you. Yeah?

Same with Andrew.

Andrew's been a good boy, too.

Normally, I'd ask a few more questions about

that, but I think we've gone for long with your husband, and I think

that we should wind this up fairly soon.

Have you had any thoughts about the team reflections,

Dorothy?

I was thinking of what I heard. Some of it I didn't hear

very well, of what they were saying also

about the community and expectations of Diane.

Yeah.

And how she would

perceive how other persons would perceive

her. And in knowing her, I know

that she

always works to live up to those expectations, because everyone

says, "Everything that you do is so well, and everything is

in order, and how do you do it? I'm

always so amazed at it." I think the more that people say that, the

more pressure it puts upon her. And

that's a hard one because she internalizes all that pressure, because

most people don't expect that she would have to do all the things that

she does.

And that

certainly is how she internalizes that, is everyone has that

expectation, and I think people are surprised or they would not be surprised

if she falls down at anything or says, "I can't do it," or, "I need help."

Why don't you do it? I think there is a couple. Okay.

And then that one like that.

There.

Because people will say she certainly has a handful, but look at

how great it is.

Yeah. Okay, so that's

something that I want to also pick up on.

Mm-hmm.

Inadvertently, people will actually increase the expectations that

Diane might have on

herself. Just the remarks about how she copes.

Yeah, and they're surprised that she continues to do that.

And if she says, "I can't,"

I don't feel that everyone will say, "Yeah, it's about time she said that,"

because she just moves along so well that sometimes people would

see her and say, "I don't think she has a care in the world."

Which is just incredible.

We're going to stop in just a minute.

Normally, I'd be wanting to ask a few more questions about your experience with the

equipment team.

Mm-hmm.

But I have just one or two other questions I'd like to ask, and then we'll stop.

Okay?

Yeah.

I

was talking to your mother

briefly about,

I think about her contribution to you

challenging the discipline or whatever, and your mom talked about her contribution

to reinforcing-

Yeah

... you as a...

Was that acknowledgment from your mom? Was that a positive thing for you to hear?

Michael returns the conversation to Dorothy's acknowledgment of

culpability on the assumption that this is a significant

contribution to addressing what Diane might have experienced

as an injustice, and on the assumption that this opens new

possibilities for their relationship with each other.

Since the issues that Diane has been struggling with appear to be

significantly gender issues, Michael assumes that Dorothy

has been struggling with similar issues in her own life.

He also assumes that she, too, has been working to break

from certain gender-specific expectations.

In response to questions based on these assumptions, it becomes

apparent that there are certain parallels in the identity

projects that both Dorothy and Diane have embarked upon,

and therefore, an element of being together in shared

dissent.