Khari “Needlzs” Cain speaks in measured tones while in the chaos of afternoon school pickup. He’s juggling like a champion: simultaneously conducting this interview while listening attentively to the day's report on his daughter, Makayla.
Makayla has autism. The clinical diagnosis is the 22Q Deletion, called Phelan-McDermid syndrome. In layman’s terms this brilliant middle child was born with a chromosome partially deleted. She is non-verbal but finding her voice through letter board therapy.
Her struggles and triumphs are documented in Makayla’s Voice, a Netflix documentary shortlisted for Oscar consideration. The doc is narrated by Makayla, a gifted scribe. The doc shows the 17-year-old communicating in what Cain describes as “old English” with the help of her therapist, Rocsi. Through letter boarding we see her introduce herself to her father, who she affectionately calls “Daddio” or “Mr. Dad”. We’re exposed to her unshakable confidence as she knows her brain processes information fast. Our hearts drop as she runs out the home late night trying to escape herself—an action her parents call eloping.
The documentary has many goals, none more important than providing motivation for children who suffer from the same condition. “This was just a piece for us to have out there so when we started to fundraise for her nonprofit, people could know about her and why we do what we do,” says Cain. “The plans were to build a mobile autism clinic, and travel to lower income neighborhoods. All this [Oscar] stuff is just extra.”
LEVEL: What sparked the idea to do a documentary about Makayla?
Needlz: I always thought our family had some interesting dynamics. I’m an entrepreneur, my wife's an entrepreneur, and my oldest daughter is a DJ, doing her thing. And then we have Makayla. When they asked to follow me the first time, I was open to it because I wanted to show a Black, middle upper class family, making positive things happen. But Mikayla’s story stole the show back then on the first [show we filmed] and on the second one. I think her story and us finding her voice was such a powerful story in itself that it overpowered [the family story].
Makayla is a gifted writer. What was your reaction to how she began communicating with the family?
We had somebody that used to help out and take her to letter board sessions. After going for a while, the person told us to come in and check it out because Makayla was really communicating. I'm like, yeah, cool. I'll stop by. I honestly didn't have high hopes. We've been with Mikayla for years and years, and she just didn't communicate. So as I pop in one of those sessions somebody's reading one of these long passages. After a while she just says, “hi, dad.” And I'm like, is she talking to me?
She's like, “yeah, it is me, Makayla.” She literally introduced herself to me in this lesson. And so it started there…she ended up switching letter board therapists, and started to do more creative writing. That's when she really got into this poetic side where she's speaking this old English, super proper. We've never taught her any of this stuff. And one thing I thought was interesting is we know a couple other kids like her that letter board, and they talk the same way. It's very vivid and poetic.
This level of communication is new for all of you. When you all letter board with Makayla what do you talk about?
You would think that we would be doing it all the time but Makayla doesn't like letter boarding with us a lot because one, it's work. It's hard work for her to do this stuff, for her to move her hand and really focus. She has problems with her eye. She has sensory processing issues, muscles, all kinds of things have to happen in order for her to point to these letters. So at the end of a long day where she's doing it at school and then she comes home and she may have therapy, she takes the board and throws it sometimes, or she's just kind of over it just because she’s exhausted.
What's the interaction like between Makayla and her siblings?
Makayla is pretty much nonverbal. I mean, she'll say a couple things. She'll say eat, she'll say yes. She'll say open sometimes. She has a handful of words that she could vocalize. I think everybody has a shared responsibility. We have locks on our doors because she likes to elope and get out the house and run up the street. Throughout the day, its eyes on Makayla. When she does letter board about her siblings, she expresses how much she's in love with her older sister and how much she looks up to her. She’s been a role model for Makayla. And even though she feels like the baby of the family, she still calls her little brother, little bro.
We asked her recently, how did you learn how to do this? How did you learn how to read? And she told us recently, she would listen to her siblings when they do homework and stuff like that, or she would just pick stuff up. You got to understand she's in her own world. She's just taking everything in, everything, just processing. So yeah, she's been picking stuff up here and there, and she said that she's learned a lot from her siblings.
Pretend I’m a third grader and explain eloping to me.
Eloping is basically when you're trying to run away from your current situation. It is something that she's always done [since she was] a young child. It's this thing where they just want to get out. We've had some really, really scary moments throughout her childhood because, like I said, we have locks on all the doors. You have to hit a passcode [to get out]. It's probably a fire hazard, but we have to make sure she's safe. Otherwise, she would literally go and run in the middle of the street. That's happened before. I mean, there were times when she was younger, if we would travel to another person's house, we have to make sure we have locks for the doors. One time she left the house and ran down the street into a pond and almost died. It is such a serious thing. So now we have somebody working with her just to make sure that she's not running away all the time. She says that her body takes her too literally, where she just wants to go listen to music, but her body's saying, no, run. Get away from everybody and listen to music.
That’s scary.
A guy came to cut our lawn and left the gate open, not knowing that Makayla was a special needs child, because she looks a little different, but for the most part you wouldn't know that she's special needs. So Makayla just ran out the back gate, ran to one of the busiest streets in Atlanta, trying to go to Chick-fil-A, which is her favorite restaurant. She ran in the middle of the street. Thank God we were able to get her. But yeah, it is scary.
She has very positive affirmations. She uses words like smart and pretty to describe herself. How were you able to build up her confidence in such a way?
To be honest with you, it's natural. The pretty girl, that's just something we always call her, because if you're around Makayla, all she does is smile. A lot of times she'll say, I'm feeling horrible, but her body is literally smiling. And so as a family, as a unit, we're always encouraging her. We're always wanting to make sure she feels safe and loved. With this film, she's gained so much confidence. She says “I never knew I could be heard.” And she was joking on an interview a few weeks ago. She was like, "I'm going to have more limelight than Daddio.” She's really starting to become confident.
In the doc she talks about forgiving herself when things go bad. Essentially she’s talking about giving herself grace. That mechanic is far beyond her years.
So much of what she does, what she writes, feels like she's been here before. It feels like she's not only been here, but been here operating on such a high level of thinking. That forgiveness piece I thought was interesting too. I think she knows exactly what's going on with her and her body, and what she can control and can’t.
Pretend I’m a third grader and explain eloping to me.
Eloping is basically when you're trying to run away from your current situation. it is something that she's always done as a young child. It's just like this thing where they just want to get out. We've had some really, really scary moments throughout her childhood because, like I said, we have locks on all the doors. You have to hit a passcode [to get out]. It's probably a fire hazard, but we have to make sure she's safe. Otherwise, she would literally go and run in the middle of the street. That's happened before. I mean, there were times when she was younger, if we would travel to another person's house, we have to make sure we have locks for the doors. One time she left the house and ran down the street into a pond and almost died. It is such a serious thing. So now we have somebody working with her just to make sure that she's not running away all the time. She says that her body takes her too literally, where she just wants to go listen to music, but her body's saying, no, run. Get away from everybody and listen to music.
That’s scary.
A guy came to cut our lawn and left the gate open, not knowing that Makayla was a special needs child, because she looks a little different, but for the most part you wouldn't know that she's special needs. So Makayla just ran out the back gate, ran to one of the busiest streets in Atlanta, trying to go to Chick-fil-A, which is her favorite restaurant. She ran in the middle of the street. Thank God we were able to get her. But yeah, it is scary.
Did you think this project would resonate with the Academy enough to be shortlisted?
No, not at all. That wasn't even a thought. I think that even just being nominated, I think that for me, it would be such a proud moment for Makayla because once again, these are her words. This is what she wants to do. She wants to be an advocate. But it's like once you get considered for stuff you want it to be as big as possible the further it goes. We're trying to bring all of our resources and really make this as big as possible to help us down the road.