Independent Lens

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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... 5, 6, 7, 4... 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

voice-over

Oh, this is hard. I know it is, now. I don't think I can-- Here. Yes. I'll just take her back home. 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, 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

voice-over

'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

Woman

Sophie,

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They confirmed he's on the autism spectrum.

Crying

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It's just not what I wanted to hear. Sophie, 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 OK.

Sophie speaking indistinctly

Woman

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 hero. 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. 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

Sophie

Yes. That's true. 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. 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 conversations 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. only 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 that.

Ben

I call it. No! Ben, stop it! Mine. I'm bigger than you.

Giggling

Sophie

You want to have the same kind of expectations of all your kids for behavior, you know, doing homework, 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.

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

Girl

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 in 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 love that she's had for Dona for decades. And, you know, 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-- 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... to be different because it's what makes us human.