Independent Lens

FULL EPISODE

Sophie and Ben

Sophie Sartain, director of the Independent Lens documentary Mimi and Dona, which explores the trials of parenting and care through the story of her aunt and grandmother, brings us this short film about her relationship with her son Ben, who was diagnosed with autism. Unlike Dona, Ben is fortunate to live in a time where there is a better understanding of autism and Asperger's.

AIRED: July 31, 2017 | 0:12:14
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TRANSCRIPT

And now the short film, "Sophie and Ben".

Brought to you by the Director of "Mimi and Dona".

[Click]

[Click]

Hi. I'm Sophie Sartain,

and I'm the director of "Mimi and Dona".

Sophie, voice-over: This is my grandmother's house

where I spent weekends growing up.

Sophie: Hey, Dona.

Hi, Sophie.

Sophie, voice-over: And this is my Aunt Dona

4, 5, 6.

Dona has an intellectual disability.

8, 9, 10, 11..

and probably some undiagnosed autism.

17, 18..

At age 64, Dona still lives at home with my grandmother Mimi.

Mimi is 92 and going strong.

for 92

I started filming "Mimi and Dona" in 2009,

when it seemed obvious that their life together

would not continue like that forever.

My grandmother at the time was 92,

and she had, finally, after decades of resistance,

admitted that she couldn't take care of my Aunt Dona any longer.

I love you, and they want you to stay awhile.

No. No. They just want--

No

They want you to stay awhile

No

[Man speaking indistinctly

Oh, this is hard.

I know it is, now.

I don't think I can-- Here. Ye

I'll just take her back hom

No!

I had grown up with my grandmother Mimi

and my Aunt Dona,

um, and I had seen my grandmother

take care of my Aunt Dona for--for decades

I mean, just being this wonderful, loving presence

to my aunt my whole life.

And while I admired that so much

it made me think about myself

and, wow, could I be like that, could I live up to that

And I thought, "I can't. I can't do it.

You know, I'm not that good

I'm not that unselfish

Um, you know, how could I measure up to Mimi?

This one.

You wanna do..

Sophie, voice-over: It was during filming

that I started to fear my own son Ben might have autism

And I wondered if I was beginning a journey

that Mimi had just ended

[Scanner humming]

'Cause it's a bigger picture

[Humming continues

[Humming stops]

Sophie: Who's that? Who's that?

Ben: Aunt Dona

Sophie: That's right. Aunt Dona.

In my case, um, I have a family history

of people with autism

and--so I was nervous from the time I knew

I was having a boy, even, and when I was pregnant

that this could be a possibility

Sophie, voice-over: We had a meeting with therapists

who had been evaluating my son Ben.

Woman: So, what did you think about what they said?

[Sighs]

Sophie, voice-over: They confirmed

he's on the autism spectrum

[Crying] It's just not what I wanted to hear.

Sophie, voice-over: Well, my partner and I first got

the diagnosis for my son when he was about 4 years old

I have to say, it was scary.

I was fearful

Woman: He's gonna be okay

[Sophie speaking indistinctly]

Hey, let's go on those things.

You have these-- you know, you have kids

and you have these expectations

of what your life's gonna be like,

um, how it's gonna unfold,

um, you know, 18 years down the road.

They'll go to college, things like that

And then when you hear some-- a diagnosis like that,

it kind of throws all that out the window.

and--and you really...

you don't know what your future's gonna look like.

Oh, look! There's a baby! Look!

Baby frog?

Look. There's like a little baby right there

See that? What is that?

It's a little one. See that?

Ooh, that's a baby

Oh, don't step on it!

Yeah, I'm giving it some shade.

OK, shade is good

But don't step on it.

Crushing is not good

Sophie: Pretty quickly, I got past that

and realized that these family members of mine

my grandmother, my mother, could be role models for me.

I think of my grandmother as a her

I think she showed Dona such love for decades,

and gave her a really good life.

And to me, that is so inspirational

The great thing about our situation with Ben,

is that he is a wonderful elementary school now

and he is able to access services

that my Aunt Dona was not able to access

when she was a child in the 1950s.

She was actually asked to leave the public school system

in second grade because they couldn't accommodate her.

And my son actually entered the public school system

in second grade

And so, we started talking with him about autism

from probably when he was in first or second grade

for him to sort of understand that his brain works differently

from the brains of other kids.

And he's been open and receptive

to understand how he's different.

All right, Benji, let me talk to mommy

for a couple of seconds

and then we're gonna play together,

just you and I

OK, see the camera there

Look in the, like, very center of it.

Ugggh!

I have Asperger Syndrome

a higher degree of autism

And what separates me is, well

it's an entire spectrum.

So, I guess.

increased intellectual capabilities

decr--decreased social abilities

And, as you know, with autism comes obsessions

and I am basically just a super nerd.

Sophie: He's an amazing kid and has an incredible memory.

You know, if he starts talking about his obsessions,

you can just be blown away

by the kind of things that he can come up with

You know, I'm the type of person who was raised in the South,

you know, always feeling like I have to say the right thing

um, don't ever want to offend anyone.

Well, guess what, my son will just--ha

He'll say anything.

Oh, Ruby-- she's my twin sister

We both came out of the same incision in my mom's womb.

Right?

[Chuckling] Yes. That's true.

Sophie: And sometimes, I--you know, just have to, you know

cover--cover my-- cover my eyes and say

"Oh, gosh. What did he just say?"

AKA a C-sec-- the same C section

That's right.

Sophie: So, you know, it can be hard,

but at the same time, it's kind of refreshing.

Um, he's very honest. He's very funny.

He's very clever.

And so, sometimes we would say, you know, "Yes, Ben,

"your autism-- it gives you challenges

but it also gives you super powers".

You know, you could see his-

you know, him kind of stand up a little straighter.

when he kind of thinks, "Oh, OK. I can go with that".

Ha! So, we've had some good open conversation

about his situation

and he, himself, is pretty articulate talking about it

I made a space-- I made a rocket

to go to different areas

of the universe in this game.

Ben: Once I reach adulthood,

I think that the perfect occupation

would be game designer

I mean, because videogames are the new movies

so, I honestly have to say that I would be designing--

I just want--I feel like my purpose in life

is to design great games that people can enjoy.

Woman: It's a pretty nice day. It's not...

Sophie: Ben has 2 sisters, and they're wonderful with him.

And, um, you know, challenging at times

with the siblings, obviously.

Girl: I call.

Ben: I call it

No! Ben, stop it!

Mine. I'm bigger than you.

[Gigglin

Sophie: You want to have the same kind of expectations

of all your kids for behavior,

helping out around the house, but then there are times

when you also have to be sensitive to...

these are different individuals

and does Ben get a pass sometimes or not.

Um, these are sort of daily dilemmas that we have, um,

and that we have to navigate with all 3 children, um,

Girl: Well, really, he's just like

your average annoying brother,

but he's just a different kind of annoying.

But he's just my brother,

and I spend a lot of time with him, of course,

because he's my twin.

Oh, Ben is very gentlemanly,

and he always holds the door open for us.

And, like, he's very sweet and considerate

most of the time,

even though he can be a little irritating sometimes.

Irritating, just as in, like, sibling irritating.

Like, I don't think of him any differently

than I think of Ruby.

Yeah.

Just kidding!

[Waves crashing]

[Ben speaking indistinctly]

[Ben speakin on the rocks]

Where?

See it? It's right there.

There it is.

I think it has made me a lot more considerate

as a person and understanding,

because I've kind of learned from Ben, like,

not to judge people as much by their actions

because it might not be in their control.

Ruby: I think it's also made me more open-minded,

and it just helps me to get along with people.

Cheese!

Sophie: You know, what Mimi taught me

was just this, unconditional lovee

that she's had for Dona for decades.

And, you know, for Dona we make these great advances

in--in our understanding of the brain

and in our understanding of behavior

but yet just to show that kind of love

is--is just so timeless and universal.

And that will never change,

And for me, Mimi will always be my hero

because she really demonstrated that to me.

Differences are what makes us human.

I mean, imagine if we were all the exact same person.

The world would be a boring place!

And now since-- and since we have differences,

that makes the--

that makes the world an entertaining--e--

that makes the world that makes the world unique.

And I feel like autism and Asperger Syndrome

are just a difference,

where your brain is just built a different way, and...

it's completely fine.....

because it's what makes us human.

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