Podcast Episode 58 Any journey is made easier by walking with others. That is the focus of this episode – the impact of collaboration with, in this case, the theater as the space where the collaboration starts
In this episode, Katie Sweeney, a parent and board member of the CO/LAB Theater Group in New York, talks about her individual journey and the role musical theater has played not only in her life but also her son’s life.
Katie talks about CO/LAB and how they help young people with additional needs change the way they see themselves and, through reaching out to the wider community, change the way others see them as well. Here collaboration is about bringing people together and using everyone’s individual strengths to create something more than one person alone can create. Katie also talks about the wider impact that finding and building a collaborative community around her son has had when it comes to planning and imagining what the future might be like.Show Full Transcript
DEBRA: Welcome to episode 58 of the Journey Skills podcast. The best part for me about doing this podcast has always been the people I’ve spoken to along the way. Not only I have been inspired by what these people are doing, it always fills me with the real sense of optimism every single time I record an interview. Being inspired by others in finding a supported community, that’s really the main theme of this week’s episode. I’m talking to Katie Sweeney, who is a parent, and as you hear, an avid musical theater fan. In part, our conversation is about Katie’s experiences in trying to help her son access live theater but is also about the theater group she’s involved with.
We also talk about that question we all ask at some point “What happens when I’m not around?”. As you hear from Katie, it’s about planning ahead and accessing every single resource she can find. Developing relationships and finding like-minded people who want what you want for your young person. Katie shares her challenges when it came to taking her son to the theater and she tells a story which I suspect will resonate with most of us. Maybe not necessarily in a theater context but just in putting ourselves out there so that our children can have the same experiences as everyone else.
Katie talks about the CO/LAB Theater Group in New York and CO/LAB stands for Creative Opportunities without Limits And Boundaries. And as the name suggests, it’s a theater group focused on giving people a space to be themselves and focusing on the individual’s strengths. Key to what CO/LAB does, and Katie talks about this, is the idea of collaboration, integration, building understanding, building respect and creating a community. This is so important to create the right environment for our young people to flourish now but really, it’s also about creating something that outlast us. We all want to leave our children secure the knowledge that they will be okay. What happens when we are not around is a difficult question to answer and Katie provides insights into how she’s building an answer to this question.
DEBRA: Today I am talking to Katie Sweeney who is a parent as well as a board member of the CO/LAB Theater Group and an avid theater goer. Welcome, Katie!
KATIE: Thank you.
DEBRA: Can you tell me little bit about you and your story?
KATIE: I have a 21-year-old autistic son named Dusty or Dustin but we call him Dusty. And he is on the more severe side of the spectrum, I like to say a little left of center. He is low verbal, so he’s not nonverbal, he’s got a lot of words but he’s not conversational. We’ve been obviously riding this journey for quite some time now. Dusty really didn’t start to talk after he was born and he was about 12 months old and I took him to a work party and there was another mum with the little girl there was who was 10 months old and she was saying “bye bye” and Dusty wasn’t saying anything. This was now almost 2 decades ago and the internet was very rudimentary at that time and I remember using Alta Vista, the search engine and typed in late talking childrenand I got a few autism websites and my first thought that popped into my head was ‘Who is going to take care of him after we’re gone?’ That was my first thought.
So that is kind of always in the back of my mind and we’ve traveled along this journey now for 2 decades and it’s been peaks and valleys. There’s been moments of glory and moments of despair but I would say that we are blessed in many ways and one of the things that this journey has done is brought people it’s brought into our lives. Whether they be caregivers or special education teachers or speech therapists or others that just want to assist and help they have helped make us better people. And I like to say, we have two boys. My older son Dylan is actually at the US Naval Academy and will be graduating in May and I look at my two sons and I’d like to say that Dylan made me a happier person and Dusty made me a better person.
DEBRA: So, you’re involved in the CO/LAB Theater Group but what role does theater play in Dusty’s life and then also in yours?
KATIE: I am a passionate musical theater fan and I wanted to naturally share that with my children. My first son, Dylan, I remember taking him to Beauty and the Beast at age 6 and he wanted to leave at intermission but I bought him on plush toys so he wouldn’t. And over the years, I took him to a lot of shows and we had a great time together and then he grew up! He didn’t want to be with mum going to musical theater anymore.
So I turned to the other one, to Dusty and I took him to his first show, Beauty and the Beast. But it was a much more challenging with him given his autism and his behaviors and the sensory issues. And I remember he had started to almost take off his clothes by the intermission. We made it through the show and Beauty and the Beast is a show where there’s a lot of kids doing a lot of interesting things and just being kids! So it wasn’t really that much of an issue.
A few years later, I got up my courage to take him to another Broadway show. He was about 9 at that point and I purposely got side box seats to minimize the impact of any disruptive behavior. Dusty is extremely musical and he knows the words to every Broadway show there is and he was loving the show, singing along but there is dialogue in all of musicals and during the dialogue, it was a little what we call ‘scripty’. He video talks but he was quiet. In the middle of the second act, an usher stuck their head through the side box curtains and said, “You’re going to have leave. The backstage is complaining.” And we were close enough to the edge to the backstage that I guess his quiet scripting video talk, self-talk was disruptive to, not the audience, but the cast and crew backstage.
So I had to drag him out of that theater and with his limited words, he was screaming. “no no. stay stay.” And it was truly one of the most profoundly isolating moments on this journey that we are on. It was really heartbreaking. And so I gave up on sharing my love of Broadway with him until 2011. We have an organization here called the Theater Development Fund and their purpose is to make theater accessible to all types of individuals, whether it’s the disabled, through closed captioning or to just make it more financially accessible. They launched their autism theater initiative and hosted the first ever autism-friendly performance of The Lion King.
The way the program works is they actually buy an entire house of a Broadway show for one performance and then sell the tickets at a subsidized rate to the autism community. They staff the theater with specialists, in case someone is having a challenging moment. They set up break rooms in the lobby if an individual needs a break. They do not turn the house lights down, they leave them up slightly. They work with the producers of the show to make slight tweaks or changes. For example in The Lion King, there’s a scene called the stampede where Simba is in a canyon, I guess, getting ready to be trampled to death by Wildabeest. They turned down the sound of that. They take out any strobe lights that could be jarring. So a lot of thought goes into these modifications. They also set up every restroom as a family restroom.
Dusty and I went to the first performance of The Lion King and I sat with him and watched his face and tears were streaming down my face because of the joy that I saw during the opening number, Circle of Life. It has allowed me, since then, to take Dusty to just a spectrum of Broadway shows from Wicked to Aladdin, a whole host of shows. He’s probably seen 20 or 30 at this point.
You know, theater is so powerful. I’ve gotten to the point where now I can start taking him back to regular Broadway performances. And I’ll tell you a couple of incredible stories that really shows the growth and maturity in Dusty. I took him to see a regular performance of Wicked and he had already seen the autism-friendly performance. I was a little nervous because that moment that we got asked to leave the show still stays and is very raw. Dusty was really good during the entire show and he knew every word of the Score of Wicked and at the very end, at the end of the second act, when the two witches sing to each other in a song For Good because I knew you, I have been changed for good. Dusty picked up my hand and kissed it. That has never ever happened before.
Another incredible moment happened during this year’s Autism-Friendly performance of The Lion King. They do it every year and and we’ve been every year. During the second act solo that Simba has, it’s called Endless Night, he was singing, and I told Dusty “You can sing along, it’s fine, if you want.” I looked over and all of a sudden, Dusty got an extremely anguished face and he clenched his fists really tight and he looked like he was going to lose it and have a meltdown. And I got a little nervous and then I’m like “Okay this is how autism-friendly performance. If it’s going to happen, this is a safe environment for it to happen in”. And the song built in Dusty’s face continued to tense up and “it’s coming, it’s coming, he’s going to lose it” and then the song ended and his face relaxed and he un-clenched his fists and he smiled. And I realized, in that moment, he had become Simba. That’s the power of theater.
Since that time, I discovered a CO/LAB theater group. CO/LAB is an organization that’s been around eight years in New York, and they serve the developmentally disabled population through theater arts, allowing actors, as we call our participants, to express their voice through theater. It was started by a group of women out of Syracuse University that had been involved with a similar theater program up there. They wanted to do it in New York. They started it 8 years ago. We serve over I think 200 actors through classes like musical theater ensemble, puppetry, physical theater and then just regular theater ensemble which is with more straight acting versus musicals. It really serves a broad spectrum of individuals.
It’s mostly geared to the 14+ population and it’s really not just autistic individuals but all disabilities. There are varying levels of abilities so that there’s a lot of sharing and learning and role modeling. That goes on and we even have a leadership mentoring program that allows some of our actors to become leaders in the classroom, in the classes and mentor other students.
I first became involved with CO/LAB 2 years ago. There’s something called A CO/LAB Connect Program where they not only have classes but they go out into the community. And Dusty and I signed up for a workshop that they ran and that’s where I met them. Dusty enrolled in the next semester’s class and then I joined the board of CO/LAB a year later so I’ve been on the board for a little over a year now. And it’s a really an amazing organization that puts the actor first and that drives everything we do.
DEBRA: What kind of classes do they run for people?
KATIE: Puppetry and a musical theater ensemble which is actually a full year class where they create an original musical. For that, we actually hire a lyricist and a songwriter to create the music but the theme and the story all comes out of the actors. They do a lot of improvisational work. In addition to their core programming, they do every month guest artist series, so actually last week and this week, Dusty’s been doing a class on learning how to juggle and how to spin plates. There was one on comedy and one on tragedy, so, it’s really an eclectic spectrum of programming that we offer.
DEBRA: Is the purpose more about developing skills than actually putting on a performance at the end?
KATIE: It’ both but it’s really more focused on skills and collaboration. And really, there is such as a socialization element to it. So, every CO/LAB class starts with a dance party, where everybody just loosens up and dances and there’s a lot of breaking into small groups. And really, a lot of give and take with your fellow actors. It’s always trying to foster a collaborative environment, hence, its name. So it’s CO/LAB and it’s Creating Opportunities Without Limits And Boundaries. That’s where the name came from but it is also short, short for collaboration which really is in our DNA. It drives everything we did; inclusivity, collaboration. You walk into a CO/LAB class and you really have a hard time telling apart the teaching artists, the supporting artists and the actors. It’s hard to tell who’s who because it’s so inclusive and integrated.
DEBRA: What have been some of the challenges in running an organization like this?
KATIE: The big challenge is funding all of CO/LAB’s programming which is free of charge to our actors. So obviously, we rely on private fundraising, donations as well as institutional giving and grants. So that is an obvious challenge. In terms of at the classroom level and in the day to day, I think because we have such a wide variety and spectrum of individuals with a whole host of different abilities that many of our actors are extremely verbal and then there are some like Dusty who are not verbal at all. So, they make accommodations depending on what the abilities are and they have a unique way of tapping into the core capabilities and competencies of an individual. So Dusty may, at the end of year show, read his lines because he’s a great reader but he’s not a spontaneous talker. There’s a couple of individuals that speak through assisted devices and so the key thing is having the support there. This support is through the teaching artists and supporting artists really get to know each individual and each actor and finding out pretty quickly what their strengths are and how to leverage their strengths.
DEBRA: In terms of the social development of people, can you give me some examples of how people have changed because of being involved in a collaborative social environment?
KATIE: You know you walk into a CO/LAB class; we also have lots of events; we have the beginning of season get together, we have an end of season finale party. For an organization that works with a real and I keep using this word because it is a spectrum of different ability and the individuals that are of all ages and all capabilities and each one so unique. This seamless integration, I think what it really allows people to do is feel safe and so that when they get in a social setting especially CO/LAB-related, it’s real integration then.
There’s a lot of give and take and socialization and conversation and respect. I think what we really see is a respect for everybody, which the world could use a lot more of these days. I think it just being respectful of what each person brings to the table. That’s why we like to bring CO/LAB into the community and not just in our own core programming because I think there’s a lot to be learned from watching our CO/LAB actors, our CO/LAB classes, the way they integrate, the way they respect one another and the inclusivity and the collaboration that takes place. There are lessons to be learned from that.
DEBRA: When you say bringing to the community, how do you do that?
KATIE: These are more one-offs than regular but we have a program where we go into the schools both neuro-typical and neuro-diverse schools, where we would do a workshop with the students and then they get to perhaps support a CO/LAB actor and really see what a CO/LAB class is like. They will conduct a workshop and we will invite people who aren’t CO/LAB actors to participate.
And we’re growing that part of the organization because the more we get out and spread the CO/LAB message and story, obviously, it helps with fundraising. But also people walk away changed when they see a CO/LAB class and they see, as I said, the collaboration, the integration, the inclusivity, it’s kind of spreading the CO/LAB message. People are changed when they see that.
DEBRA: Have you any tips for someone who might want to take their son or daughter to the theater, what are some of the ideas that you’ve used and not just where it is an autism-friendly performance?
KATIE: It’s really challenging, hence my story, that was a perfect example of the challenges that parents face with trying to expose their child to an experience like theater. More and more theater companies, at least in this country, I would hope and others as well, are beginning to have relaxed performances where all are welcome and they make modifications so if the individual needs to bring in their own food or they are making a little bit of noise, they aren’t told to leave.
I would seek out one of those. Many, many large cities and their companies in large metropolitan areas are now providing relaxed performances. If you don’t have that available to you, then one thing I would suggest is that if you’re planning to take your child to the theater, let them know ahead of time that you’re bringing an individual, whether it’s an individual on the spectrum or that has certain disabilities.
So give them a heads up which helps a lot because I remember bringing Dusty once again to a regular performance. It was the revival of Cats and they had done an autism-friendly performance of it. We weren’t in town so I wanted to bring him to a regular performance. He wears noise-canceling headphones and they’re pretty big so he walked into the theater with them on and it really helped defuse things right away. The front of house staff got it and they made sure I had an aisle seat and they made sure at intermission that they showed me where the family restroom was.. So I would suggest letting the theater know ahead of time and asking what accommodations could be made if your child needs accommodations.
DEBRA: What are your tips if someone’s thinking about starting up a theater company, obviously not on the same scale or something like CO/LAB, but if people are out there listening and think “I’d like to do something like that”, what would be some of the ideas that you could offer them?
KATIE: You need to find space, some kind of rehearsal space which is tricky. I’m sure people who are on this journey have a community already of people because there’s safety in numbers. And we all have networks of other parents and their children that we met along the way. It would be really tricky to do it on your own. Find someone that knows something about theater. And then what I would suggest is approaching a local theater company to tap into their resources whether it be rehearsal space or theater or actors that can (part of their repertory company).
So the way CO/LAB’s organized as we have a staff of teaching artists who do get paid but then we have that augmented by supporting artists who are volunteers. So tap into the volunteering network as much as possible. Start small. Don’t try to take on too much you might want to start with 4 individuals, see where that goes. So it starts small with a few actors and a few in one class on a weekly for an hour and a half and then see how that goes and move on from there.
DEBRA: Can I take you back to the beginning when you were talking about the fact that you worry about will would happen to Dusty when you’re not around, how important has the theater been in making you feel that there is a community around him and people that understand him?
KATIE: I would say they are one piece of the puzzle. We have been able to find many, many organizations and groups, theater is one. We run with the Achilles Track Club, we surf with Surfers Healing, Dusty sings and takes drum lessons and piano lessons with Daniels Music Foundation which is the CO/LAB for music. In many, many different areas we have found organizations and through those organizations, we are surrounded with people that are truly the most selfless, giving, warm-hearted, kind-hearted people. What we’ve done is surround ourselves with the community that has restored our faith in mankind. When there is a lot of negativity out there, there’s so much positivity that we’ve surrounded ourselves with.
We hope to continue to find like-minded people that will ultimately be able to address the longer-term solution. Dusty is 21 and there are no mandated services beyond age 21, so we have to figure it out and we have to figure out what his day to day life is going to look like. There are so many organizations like CO/LAB and that we can leverage. Is he going to do theater from 8 AM to 3 PM? No, he is not. CO/LAB will be part of his life for the rest of his life and we will have other organizations and through this community that we’ve reached out to or become involved with. We’ve met so many other parents who are facing the same challenges that we face and it is brought us all together and there’s, as I said, safety in numbers. Yes, it’s a question but we are in the process of building that solution for Dusty and being surrounded by the people that we’ve been able to meet through CO/LAB, we’re comforted for sure.
DEBRA: Katie, thank you so much for your time.
KATIE: It’s been such a pleasure, Debra. I appreciate it.
DEBRA: Key takeaway? Collaboration builds community and community builds potential for a secure future.
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