Leslie: So we are here today with Janet Grillo, and she is the writer, director and producer of the independent film, “Fly Away”. The movie explores the relationship between a mother and her teenage autistic daughter. The film has attained some rave reviews so far.
Thank you for joining us today Janet!
Janet Grillo: Well, thank you for having me. I am very pleased to be here.
Leslie: So what gave you the idea to write Fly Away? To write the script? Are you the mother of an autistic child?
Janet Grillo: Yes exactly. So, I am the mother of a son on the spectrum of autism, and during my journey of parenting, I encountered a lot of challenges raising my son. But even more so recognized the heroic courage of other parents around me, whose children were even more impacted than mine. And I did have the experience of making the very heart wrenching decision to place my son in a residential therapeutic treatment facility, I mean a boarding school, and it was really a hard choice to make, but very much the necessary one. And it was a journey of personal discovery for me to have to recognize how much my own identity was becoming totally subsumed in being his caregiver, to the point where it wasn’t serving him and it certainly was not serving me. And so as much as a catharsis to kind of process the experience that I have been through for myself, and also to share the journey and the experience that we as parents have, I felt really compelled to make this film.
I had written and directed a short film that was really a day in the life of the mother of a teenage son with Aspergers, which is more like my son. And I had the privilege and opportunity of showing that short film at various film festivals around the country. And invariably the audience would be parents of other children on the spectrum, and invariably the first question from the parents was always “are you going to make a feature?”. And after about a year of this, I started to realize that they were saying “please make a feature.” And I recognized that I had the ability to tell our story, not just my story. And then I started to feel the responsibility to do it. And not to sound grand about it, but I felt like I was speaking on behalf of our community about a very special and shared experience. I heard people say that every child on the Spectrum is different, which I agree. If you meet one autistic person you have met one autistic person.
Janet Grillo: But I feel like all parents are the same. That we share this obsessive dedication.
Leslie: I have to say I watched the movie, and I watched the movie with my husband, and it’s the first film that I’ve seen that I think accurately portrays parenthood with an autistic child. I mean the meltdowns, explaining what you have to sacrifice, worrying about if they go roaming, just even the struggle between the mother and the father of the child. There is, I think, as mothers we struggle with, you feel like you have to help your child, but I feel a lot of times that fathers have…I don’t know–.Many mothers I talked to struggle that they feel they are torn between their child and the husband or the father.
Janet Grillo: Well, I will say that to my knowledge Fly Away is the only narrative fiction film about parenting a child on the spectrum of autism that is made by the parents of a child on the spectrum of autism. There are television shows like Parenthood, which is a TV show here in America, for those who are listening here and overseas. And Jason Katims, who’s the creator and the head writer, does have a son on a spectrum of autism, so that’s the television show that I think very accurately depicts a lot of challenges and struggles. But I don’t know another narrative fiction feature, so I did feel that I had a unique opportunity to be able to tell the story from the inside out, and to be honest about it and candid about it. Yes, I think there are many, many dedicated fathers out there, but ultimately it falls to the mom in so many ways. And that is the biological imperative of the bond between mother and child. It’s just irreducible.
Janet Grillo: They say that if you are in an airplane that is going down, you should put your oxygen mask on first and then on your child. But I’d be curious to know how many mothers actually do. It’s against biology to have that impulse. You must save your child first. And I think that for those who have children who are in a great state of need, we are pouring our resources into that child, not recognizing that we ourselves are suffocating and lacking oxygen. And that is not serving the child either. And so that’s very much at the core of the journey of “Fly Away.” It’s really the mother’s story. It’s a dynamic between the mother and the daughter, and I’m extremely proud of the performance that Ashley Rickards, who is a brilliant young actress who does not have autism, but very authentically depicts the character who does have autism, and she’s a full-fledged character, she’s a human being with autism. She is not playing a symptom. She is not playing a disorder or a label. She is playing a human, and the dynamic between the two is very much at the core. But ultimately this is the journey of the mother, who has to recognize that her love alone is not enough. And she has to recognize that the needs of her child have eclipsed her ability to meet them, and that she simply must let go and give over and accept the help that, thank God, she has able to find. I feel that this is a universal story of parenting because ultimately it is the nexus point that every parent reaches. Whether your child has special needs or not, there’s a point which you recognize that for your child to move forward in life and become independent, you have to let go. But when you have a child with special needs, that moment is fraught with peril. And it’s that love, that combination of love and terror, that has a grip on us. That’s the dramatic situation, the dilemma, the dynamic and the journey that I attempted to describe in “Fly Away”.
Leslie: You did a fantastic job. I wanted to ask you how did you go about making the film and finding the actresses? How did you go about that?
Janet Grillo: So, I have been in the film industry for a long time.
Leslie: You’re a film professor in NYU, right?
Janet Grillo: I am currently a professor of film at the New York University Tisch School of the Arts, in the Undergraduate Film Program. And prior to that I had been a studio executive at New Line Cinema, and an independent film producer. And I always intended to write and direct my own movies, but got sidetracked into making the films of other people. So finally I had a very compelling reason and need to step forward and tell my own story. But because of my decades of experience in the industry, as a professional, I had access to a lot of resources and relationships with a lot of other industry professionals, including some actors. So the wonderful actress Beth Broderick, who plays Jeanne, had been a friend of mine for many years. Greg Germann, who is also wonderful and plays the role of Tom, I also knew for many years. And then through my friendship I was able to work with a wonderful casting director who just reached out to the professional community. And we auditioned and found Ashley Rickards.
Janet Grillo: That was really a blessing. That was like a deliverance from God. [Laughs]
Leslie: So, were all your goals met for this movie? Did you set out with a certain set of goals, were they all met?
Janet Grillo: The creative goals absolutely were surely met and I am really proud of it. The film was made from an ultra-low budget; this is a truly independent film. We raised the money independently and we shot the film in 14 days. The total budget from soup to nuts, delivered to our distributor, cost under $200,000.00. We premiered the film in dramatic competition at South by Southwest Film Festival in Austin, Texas and it got very good reviews. We put it in to limited release theatrical immediately after. South by Southwest Film Festival is at the end of March, and April as we know is Autism Awareness Month. So, we wanted to be able, when there is national conversation about the topic, and there’s a pool of light on these concerns, we could step into that pool of light. We were supported by Autism Speaks to do a social outreach campaign and some advance screenings. So, we took advantage of that timing. Since then the film has been available on Netflix and Amazon. Internationally on Itunes. It’s in all of the English speaking territories, in UK, Australia, Canada and New Zealand. It’s also on Netflix in Scandinavia. However, despite this wide outreach and effort, it hasn’t reached as much of the community as we would hope. And hasn’t reached out to the broader audience which has been my great goal. Although creatively and artistically, I am completely satisfied and privileged to have been able to work with such wonderful professionals and made a film that we are all truly proud of.
Leslie: You should be
Janet Grillo: Thank you! I have gotten the critical response that you spend your whole life hoping to get. Most importantly, we showed the truth. My great goal was that to candidly describe and express who our kids are, and what our journey and our dedication to our kids is. Because, you know, this population is aging. You know, there was a crest in the wave and there was kind of a peak in the Autism epidemic. And that crested peak, which my son is a part of at age 19, is moving to a cliff. We’re aging out of the system, and about to just crash and there’s a tsunami wave of epidemic behind them. And what happens when these kids becomes adults? And especially when they outlive us as parents? We’re gonna need for the larger society to step in and help, and support and participate in their care, and include them in their community in a loving and accepting way. And if we’re gonna ask society at large to help, to meet this need, then we have to describe this need candidly. And so that was one of the reason that I felt it was important to make this film, as though it were a documentary. It’s not a documentary, let me be clear, it’s a narrative fiction film. It’s not a documentary, but many people who have seen it, have wondered. It has the quality and similarity of naturalism. We want to candidly say, this is what it’s like. We shot it in a small house that looks like typical America; you just pull back the curtains of any house in a suburban America, and wow— look what’s going on inside. This can be your neighbor. This can be the family down the street, this could be, you know, that family in the church pew with the child who is behaving strangely. You know, 1% of all Americans have autism. That’s millions of people..
Leslie: right, that’s a huge population..
Janet Grillo: It’s a huge population and sadly it’s a growing population..
Janet Grillo: We are 1 in 10 boys in America, actually it’s 1 in 9 boys in America, and so these are the people that you see in your grocery. When you go and get an ice-cream cone. How we as a society prepared to include them, incorporate them, and accept them? I’m a firm believer that we don’t love our children in spite of who they are. We love them because of who they are. And I think, unfortunately, there’s a lot of mythology out there of like, oh, autistic people are special! That kind of magic special child that comes in that makes our life fuller and better. You know, I’ve had so many people say to me, oh! Your son has autism, what is his gift? What is his special gift, you know, like every autistic person is a genius. And I’ve had people say this is the next phase of evolution. I mean this is all garbage and fantasy, and to me it is sad because it is saying that we have to have some romantic, rosey idea or view, in order to accept and love the least amongst us. No! This is a disability, and it is important to know that most of the people on the spectrum of autism are not Asperger geniuses. They are not people who are like Bill Gates , who are gonna go out and create the next word processing system. These people are disabled by profound neurological problems. I thought it was imperative to dramatize a person with autism who is really severely impacted.
Janet Grillo: Well, as autism parents, we are indefatigable .
Leslie: Yes, yes. We conquer the world, I’m convinced!
Janet Grillo: Yeah, well, when you look at every autism advocacy organization, when you look at the important research that has been done, it’s because parents have demanded it. When we look at every phase of rising to meet the needs of the child, it’s because the parents have been at the forefront insisting, demanding, creating, cajoling. Now, causing intentional communities for adults to occur— that is the next phase of the revolution. I feel very proud to be numbered amongst this force! [laughs]
Leslie: Me too…it’s one of my goals to make sure people understand the reality of having a child with autism. I can’t tell you how many times, well, we’ve actually stopped going to church for a while because I could not stand the looks that I was getting, because she doesn’t understand what they say. And she has—and I quote–the “look of autism.” I didn’t realize autism had a look. I would say to them, I truly believe that with knowledge comes understanding, and with understanding comes acceptance. So, I am trying to raise people’s knowledge of what autism is. Not everyone with autism is like Rainman, not everyone with autism is a genius. But we all love them just the way they are. Every person is different, why not accept everyone for who they are?
Janet Grillo: Right! Just to complete my thoughts from before, is that when you asked have all my goals been realized—no. The greatest goal that I had is that this film would reach beyond the community of families impacted by autism, to those who are not familiar with autism. To offer window of insight. Unfortunately we haven’t really crossed over, so I am very grateful for an opportunity like this to help spread the word. And hope that if people do take the time to see this movie, and if it moves them in any way, that they will share it. And that they will talk about it, they will post about it, or tweet about it, or send an email or link or whatever, in all the ways that we communicate with each other. So people will know that it’s there, and it can be a tool to encourage communication and understanding. That is my greatest goal, that this becomes a vehicle for a larger purpose. I feel that it is satisfying in itself, that it has some function.
Leslie: I certainly hope that autism parenting magazine will help you out with that.
Janet Grillo: Thank you.
Leslie: How old was your son when you decided, or when you came to the realization, that you were going to have to take the next step.
Janet Grillo: Yeah, he was 12, and puberty was setting in hard, and you know puberty for somebody who is very neurologically sound is hell… [laughs]
Leslie: Right, then you throw this in the mix?
Janet Grillo: Right, well you know, when a child is as fragile as our kids are, and you throw in puberty, all the wheels come off. He was failing to thrive. You know, he was falling apart, he had lost school placement, and most importantly he was miserable. He was violent and he was in despair. So, as hard as it was, I had to recognize that he needed to be in place that could contain him, and could offer him 24/7 intense, constructed containment. And I don’t mean bad containment like a strait jacket, I mean a stable, safe environment with people who could respond to him therapeutically at all times. So, we were really blessed to be able to find a fantastic school, the Devereux Glenholme School. It’s in Connecticut, and it’s beautiful. It’s on acres of rolling hills, in a gorgeous part of New England. And the people are kind and gentle and generous. Students live in cottages, and they learn to self-care and cook. They do community activities. They have a beautiful theatre, and they put on plays, and they have special education classes. He is doing beautifully, and he has girlfriend and he even has a best friend.
Leslie: Wow! Even better
Janet Grillo: He started to sing in the Cabaret and it’s very moving.
Leslie: That’s great, I have been to Glenholme Devereux, and it is a beautiful, beautiful facility, fantastic staff. Don’t they even have a pool?
Janet Grillo: Yes, they have a pool.
Leslie: They even have a patio where you can order ice-cream, and I said that I don’t think I would ever leave.
Janet Grillo: Hahaha! They have horses, they have go-carts, and they have a small restaurant where the students work. They learn to work in restaurants, there’s vocational skills, as well. It’s fantastic. I attempted at the end of Fly Away to somehow replicate a mirror, so that the school that my character, Mandy ends up attending, is modeled after Glenholme. I just wish there were thousands of Glenholmes. I mean, we were incredibly lucky that we were able to find it. I would hope and wish that there are as many happy endings for as many families out there that need them, and I think that is the next step. We need more resources, more facilities, more schools. Not just residential schools, but full time schools, whether it’s home placement or not, that offer this level of sophistication. And you know, unfortunately, our society is at a time when the need is increasing but the resources are diminishing. And frankly it scares me. I really don’t know where we are going as society, as a people. When you look at the disabled population, aging at the time that our economy is contracting, it’s terrifying to think what’s gonna happen.
Leslie: I know personally, I have been having trouble with the diminishing economy taking away services so, that’s the extent I will discuss that
Janet Grillo: Hey, listen I am about to go into Due Process in two weeks. We all have to fight for every penny that we can get, for every level of support that we desperately need. And the fact that there’s millions of people who need help… it’s like one small pie is being cut into millions of tiny slivers.
Leslie: Do you have any recommendations for people that are having trouble letting go? Because I imagine in the movie it was portrayed that the mother had trouble letting go of her daughter, and I imagine that it was very emotional for you as well, to send your son away .
Janet Grillo: Yeah…
Leslie: …to a place.
Janet Grillo: The first thing that I would say to that, to the idea of sending your child away, is perhaps that can be rephrased. It’s exactly the idea that you’re abandoning them, pushing them away. Which is really very different from allowing them to step forward in their own lives, towards the most independent life that they can possibly have. When you start to recognize that you’re becoming the impediment, it helps you to allow to step out of the way. It’s not so much that you’re sending away, as you’re stepping out of the way. Because if your child is neurologically typical, they would be making those steps away from you. So you have to really recognize that even though they’re neurologically different, They are still humans with the same range of feelings and needs and desires to be competent, to be independent, to make social relationships. To emotionally separate from you. There’s a kind of symbiosis that often happens between us and our kids. Particularly between mothers and the children. My ex-husband, my son’s father, used to say I was my son’s emotional dialysis machine. Until I unhooked the plug, he was never going be able to figure out how to put on the oxygen mask on himself, you know? And it’s not like I have left him behind. I am still very much integrated in his life, you know, so I think this is important for us parents to recognize. That you are not abdicating or abandoning, you are just reaching out for additional levels of support. And you’re still gonna be your child’s mom or dad, and integral to their daily life, just with more supports around you, and around him or her. And well, that’s important to know. To allow yourself to know that it is hard, and also to allow yourself to know that you deserve to have a life as well. I think that is the important piece. We tend to be so self-sacrificing that we forget that it’s also important to have a self, and not just a sacrifice. And that’s okay. You’re not being a bad parent to recognize that you have needs, too. And to allow yourself to take up some space.
Leslie: You’ve had a real good experience with the boarding school. Do you remember or do you happen to know the ages that are allowed, do they limit it by age or by capability?
Janet Grillo: So the school that he attends, and of course every school program is different, but the Glenholme school, I think is from age 12 till age 21.
Leslie: Ok great! I wasn’t sure if it stopped at 18, or if it was continued to age 21.
Janet Grillo: Right, so they have a post-grad transition-to-adulthood program called the Glenridge program. They have a high school program, they have the elementary school, middle school, and children will graduate usually by age 18. According to FAPE (Free Appropriate Public Education), services are available until the age of 21. And so they have a program to facilitate post-grad. But Devereux Glenholme is only one of many, many, many schools out there that serve all kinds different profiles, different populations and different levels of need. So whoever is listening, I am sure you can find a lot of resources. I strongly recommend Autism Speaks website. It is a fount of information and resources. You can join groups that are local to your area, where they list resources, and community chat boards so you can find providers, schools, etc., and connect with other parents in your region. I also know that Autism Speaks has outreach overseas, and strong relationships with other autism organizations, particularly in the UK. So there are many kinds of ways for people to find each other, and what they need. And thank God for the internet! We can find and guide each other! And you guys are part of that, and here you are on the internet, providing this as a context for our conversation, and that’s so great
Leslie: I never thought… I always wanted to be a writer with an English major. Well, English and Special Education. But I never thought that I would be running this magazine, and holding interviews over the computer, so it’s quite an experience. I am glad that we can do it, though. We can reach out to anyone in the world now, it doesn’t have to be limited to how far I can drive .
Janet Grillo: Yes, it’s true, it’s amazing. The globe is tiny now, and that’s much to our advantage.
Leslie: Yes, so my last question is what would be the one piece of advice that you would recommend to our readers? Do you have one other than all the others, that you so helpfully included?
Janet Grillo: Yeah, I think to know that the journey with our children is long, and that the more that we are understanding about the brain, understanding its plasticity, we know that the brain remains plastic till death, and there’s constantly new approaches. New in-roads, new renovations, new therapies. That our kids are continuing to develop and grow. I had the privilege of having a long conversation with the mother of Temple Grandin, after she saw Fly Away. And she is my total hero, which I am sure is true with so many other parents and moms out there who are listening. And she said that her daughter, Temple, is continuing to grow and change. And in this last decade– Temple between 50 and 60—she saw tremendous amount of growth and development in her daughter. And so I would like to offer that as a beacon of hope. To know there are lot of twists and turns in the road. It’s not necessarily the end of the road, but it may just be a big speed bump, or a radical turn. And to keep striving, and hoping and loving.
Leslie: Alright, well I thank you so much for taking the time with Autism Parenting Magazine and I hope everyone checks out, “Fly Away” the movie. I personally watched it on Netflix and I hope everyone will check it out, too.
Janet Grillo: Thank you! And you can find it on Amazon streaming, and overseas on iTunes. Just to repeat for those who are in other language territories, and in Scandinavia. If you want to buy a DVD, you can directly go to our website http://flyawaymovie.org/and buy it from us. Just one little plug, please!
Leslie: That’s fine.
Janet Grillo: www.flyawaymovie.org. And also we’ve got a wonderful Facebook page, Fly Away Movie Facebook. It’s become a real community conversation, so please join the conversation on Facebook with us.
Leslie: Alright, thank you and best of luck to you with the success of your movie. Please join Autism Parenting Magazine on Twitter @AutismParentingMag and Facebook as well at https://www.facebook.com/AutismParentingMagazine. You can also, Follow me on Twitter @LeslieAPMag.