Steve Adubato goes One-on-One with Eliza Factor, Founder of Extreme Kids & Crew and author of "Strange Beauty: A Portrait of My Son."
KCBS Radio afternoon anchor and A2A founder Jeff Bell spotlights Eliza Factor author and founder of the non-profit Extreme Kids & Crew. Eliza was inspired to create the arts and play spaces by her son Felix who has multiple disabilities. You can read the transcript and/ or hear Eliza’s extended conversation with Jeff below as well.
Jeff Bell: Each way spotlight. I'm Jeff Bell with another story of turning adversity into advocacy. He has a grab bag of diagnoses That's Eliza factor describing her son Felix and his many diagnoses autism and cerebral palsy at the most well known throughout his life. Felix has faced all kinds of challenges.
Eliza Factor: He can't move like other people can move and his brain doesn't process language the way most people process language. And for many years this factor raising Felix led to her own recurring challenge that isolation that you feel when the world is made for other children and not yours.
Jeff Bell: Factor says she always knew there were other parents out there raising children with disabilities and special needs. In fact she often see them at hospitals.
Eliza Factor: We All smile at each other in solidarity but there wasn't really a moment just to relax and be able to talk and really connect.
Jeff Bell: And that void says factor led her to imagine a special place for exceptional families a place that could bringing kids together to play to make art and also music and stuff.
Eliza Factor: But where parents came to so it was like we're all here together to bring her vision to life.
Jeff Bell: Factor decided to create extreme kids and crew in New York City based nonprofit providing welcoming supportive spaces for kids with disabilities and their families and friends. The kids get to play and make arts in a judgment free place and the parents Wells's factor when they come into this space where they can see that their kid can just be themselves.
Eliza Factor: There's a huge release and a feeling of acceptance.
Jeff Bell: To learn more about how Eliza factor is turning adversity into advocacy visit a two way spotlight dot org for the nonprofit. A two way alliance. I'm Jeff Bell.
Announcer: It's time for another episode from adversity to advocacy. A weekly conversation with remarkable individuals who are proving that we help ourselves by helping others. Here now is your host Jeff. Bell anchoring the afternoon news on all news 1 0 6 9 a.m. 740 CBS.
Jeff Bell: My guest today is allies of factor the highly successful writer and founder of extreme kids and crew a nonprofit that connects families raising children with disabilities through the arts and play as you'll hear her advocacy grew out of her experiences raising Felix her son who was born with multiple disabilities. So Eliza I'd like to start by asking you to tell us about your life before Felix arrived. You were a professional writer.
Eliza Factor: Well I'd say I was definitely a writer trying to be a professional writer. I got my MFA and I had written a couple of novels but I couldn't get them published. So I wasn't calling myself a writer. I was calling myself a struggling novelist ex waitress kind of person.
Jeff Bell: Safe to say that you did not anticipate becoming an advocate per say in your life.
Eliza Factor: No I had absolutely no intention to do such a thing. I really was terrified of public speaking.
Eliza Factor: I felt most comfortable with a close friend or writing in my bedroom alone with my thoughts so completely not what I would have expected.
Jeff Bell: So life changed in a big way when you became pregnant with Felix. What did doctors tell you at the time of Felix's birth.
Eliza Factor: He he came early so he was a preemie and he was in the making for 10 days and he was all floppy but the doctors didn't really know anything was majorly off because he was a preemie and so and and had I been a mother before Felix I'm sure I would have been more like this baby's really different than my other babies. So I didn't I just didn't know what was going on I just knew that he was really adorable baby when he wasn't colicky. He was like the funniest loveliest most beautiful creature I'd ever held in my arms. And it wasn't until he was about six months that we realized that he really was very floppy and needed physical therapy and stuff and after after we started seeing physical therapists and getting enrolled in early intervention about a year after this process began we discovered that he had lost a significant amount of white matter in his brain and that he would be in the words of our neurologist moderately to severely disabled throughout his life.
Jeff Bell: The doctors wound up giving you two distinct diagnoses as I recall later.
Eliza Factor: Well the first one the neurologist gave us was about the the white matter it's called Perry ventricular look on my left.
Eliza Factor: And then later on I discovered that that wasn't a useful diagnosis for getting help at school and insurance and stuff because it's not it's not as common as a diagnosis of autism or cerebral palsy which is which he also has. I mean it caused his autism and his cerebral palsy so he he has a grab bag of many diagnoses and autism and single palsy at the most well known.
Jeff Bell: I'd like to talk a little bit about those those challenges for Felix and for you his parents as Felix grew up. What were some of the specific challenges that arose.
Eliza Factor: Well for Felix His challenges are his body. I mean he can't move like other people can move and he doesn't process language the way most people process language. So he has this body and mind that are actually very powerful and I'm beautiful but they really operate in a way that's very different from from most people and so it's nothing fits him you know like you can't find pants because you'd need like Velcro scenes to open them up to put him on like he couldn't he couldn't walk up stairs.
Eliza Factor: New York City was like just an incredible challenge. So there are those kinds of challenges for him. For me it was.
Eliza Factor: The isolation that you feel when the world is made for other children are not yours. I mean it wasn't just the physical stuff. There's a lot of social stuff that happens to it. What I found difficult I think was just the difficulty of talking with my friends and family about what was going on.
Jeff Bell: So you discovered as you were raising your three kids that with your daughters you found yourself in social situations with other parents who could relate very well to your daughters and vice versa but you really weren't finding that in terms of other parents raising a Felix if you will.
Eliza Factor: The problem for us in New York City was that most of the stuff that I found that I loved for Felix was therapeutic. And so I made some really nice connections with physical therapists and occupational therapists but there wasn't really just a place just to hang out with other parents and I would see these parents like in hospitals and you know hospitals and hospitals and like we thought I was going to smile at each other in solidarity but there wasn't really a moment just to relax and be able to talk and really connect and at hospitals you know aren't that conducive to that sort of thing or social service agencies or or whatever.
Eliza Factor: So I wanted to create a space that was kind of based on an idea I got from my daughter's preschool of you know like just bringing kids together to play and to make art and listen to music and stuff.
Eliza Factor: But where parents came to. So it wasn't a drop off.
Eliza Factor: It was like we're all here together and let's just just relax together. And the other parents and the other siblings I'll get it. And there isn't that feeling of tension that so often accompanies difference.
Jeff Bell: So it sounds like you started playing with this notion of creating what became extreme kids and crew talk about the evolution of all that how did you take it from idea to reality.
Eliza Factor: So we're looking for a house that would be more accessible and we came to this a kind of warehouse thing and I I just kind of fell in love with this warehouse and I was imagining how we could create this amazing space with like you know like he loves swings so we'd have swings here and we could have a good indoor pool going crazy I was just completely like in my head imagining this utopia for our family and then I was feeling like just a little disgusted by it because the most I mean my husband happens to have one of these one a million jobs.
Eliza Factor: I mean I didn't grow up that way and so I didn't really I couldn't imagine actually doing that just for us. But I was thinking if I could make this for all of the other mother I know a handful of other mothers in my position.
Eliza Factor: We could have like a communal living room we'd like a communal space that where we could all just like hang out. That would be amazing. So that was the idea. And that came in like March of 2010. I think I want to append disability Jim that you know brings people with all different kinds of disabilities together different ages and their families. That's. That was my idea. And so I you know calling these organizations going this is what I want you guys to do. And and what a wonderful development. Call me back. You said we don't we really think that we need something like this in New York and we can't get that kind of money for that but these things come from like grassroots organizing by parents.
Jeff Bell: In other words good luck with it you do it.
Eliza Factor: And I was like well what does that mean. And I mean like how do you start a grassroots movement.
Eliza Factor: And and so he kind of was like Well you usually start by a focus group you know. Then he told me to have a spaghetti dinner and invite you know as many people as I knew that might be interested in starting something like this and have them over.
Eliza Factor: And brainstorm my idea and go from there.
Eliza Factor: And so I kind of just sent this email out to friends and neighbors and professional people we'd work with.
Eliza Factor: And by the time I started talking about this idea the people playgrounds random parents would hear about this and come over to me and say oh I have my uncle would be really interested in this sort of thing or have you talked to this therapist or whatever.
Eliza Factor: And so people just kept on responding really positively to this idea. And and when I had this brainstorm everyone was just like the energy created was enormous. And so like. It just kind of propelled me along. I couldn't stop doing it because people were so excited about it. And at that brainstorm we realized of course no one had a million dollars to buy it warehouse and you know transform it into what you told me we had to start slow which is just by having parent child classes and clay and yoga and art. That was how we started.
Jeff Bell: Then let's fast forward from there lives and terms of where the organization is today. Give me the 30 second elevator pitch.
Eliza Factor: We create open accessible spaces to bring families kids together through the arts music and play and in so doing create a strong family community that supports a thought in you are not narrowly defining challenges or disabilities you have a wide spectrum of challenges that you welcome in your space.
Eliza Factor: Yeah. And I mean eventually when we do get that enormous warehouse in the sky we'll be able to create environments that will really cater to various different kinds of disabilities which be terrific.
Eliza Factor: Right now we have play spaces in Title 1 schools and we bring in sensory equipment that is used in sensory gins which has a therapeutic value and the therapist at the school can use that equipment with their kids with disabilities and it really helps their sessions with them. But at the weekend we open it up to the New York City community at large and families with kids disabilities kind of play and do art and stuff. The majority of the kids have autism or ADHD just because of the nature of what we can offer in these spaces. But whatever we get up we get all the different kinds of people but I didn't dream about being able to create larger environments with you know quieter spaces and talk if you would about what's in it for the parents.
Jeff Bell: I mean you've described a great space for these kids to come and be happy and be comfortable but I know that your project is about much more than that it brings these families together.
Eliza Factor: Yeah we often have people that come in for the first time and the parent. I think it's almost always the mother just starts to cry because they're so relieved because you carry so much fear and anxiety when you're wandering around the city with a kid who could maybe do something that provokes an outrage.
Eliza Factor: And so you're always trying to control that child and try to making them to make them behave in this conventional manner. And you're doing it to protect them but it's part of you feels terrible because you're squelching your child. And so when they come into this space where they can see that their kid can just be themselves they just start to cry. It's amazing. So so there's a huge just release and a feeling of acceptance. I think it's possibly more powerful for the parents than the kids themselves.
Eliza Factor: And then of course the friendships that emerge I mean are are very very strong. So like a lot of the good that comes out of a space like this doesn't happen at the space that happens when someone's having a crisis at home and then all of a sudden they have two or three people they can call and they realize they're not alone and that they have a spontaneous and warm net of people that really care about them.
Jeff Bell: It's such a cool model. I want to shift gears before we let you go and talk a little bit about your decision to write an incredibly intimate memoir called strange beauty a portrait of my son. Bottom line for me your goal for the book what do you hope people will take away from strange beauty.
Eliza Factor: I want people to first of all just enjoy our story like my friend read it and he said afterwards he's like Is it all right. Police say this is entertaining fixed people think of it like this is such a heavy topic but I guess what I deeply want is for people to understand that my story and Felix's story isn't that different from their own. It's really a story of parenthood and it's a story of becoming aware that we're all made up of disabilities but we all have things we can and cannot do.
Eliza Factor: And once you lose the fear of that life becomes much sweeter and funnier and less oppressive and so. So I want to use the book to to break down the fear and pity surrounding disability and to reveal it as just a universal part of life.
Jeff Bell: It dawns on me as I listen to you tell your story that you make a living with words you are very gifted wordsmith Felix largely does not use words as I understand things What is he taught you about communicating such a good question.
Eliza Factor: Thank you. He's made me such a better writer.
Eliza Factor: One of the things that I feel so passionately about disability as a disability you learn from disabilities your own and other peoples and so when you're coming up against the disability that seems so tough try to ask yourself what is this teaching me. I can't teach Felix to use language the way I do. That's not how he uses it but because I've spent so many years watching his body and the code. Yeah the tone of his skin and like listening to the vibrations of his voice and and the way his eyes sign or they dull or the communication is very real and I guess it's it's made me aware of how much of our communication in general is not verbal because really words are just like the icing on the cake.
Eliza Factor: Felix made me so much more aware of it and it's certainly helped in all kinds of aspects of my life.
Jeff Bell: Well let me wrap up by saying that I think what you're describing Felix has taught you a lie so I think you are now offering to the world through your work your blog the book and I just want to salute you for courageously doing all of that and also for taking some time to chat with us today. Very much appreciate it.
Eliza Factor: Thank you so much for your great questions and your wonderful organization.
Jeff Bell: Adversity to advocacy with CBS Radio's just now is produced by Sandy Gorman edited by Jessica to learn more about our guests and the nonprofit a two way alliance in a two way alliance stories.
Original podcast recording published by The A2A Alliance
EXTREME KIDS & CREW IS A WELCOMING SPACE WHERE CHILDREN WITH DISABILITIES AND THEIR FAMILIES SOCIALIZE, CREATE AND PLAY.
This Father's Day, we're looking at Extreme Kids & Crew, a charity on the Goodnation Giving Platform.
There are many kids throughout New York City who have a wide range of physical, intellectual and developmental disabilities and live in a society that has not adapted to support their their academic success, independence and ability to make friends. Their parents grapple with feelings of fatigue and isolation as well as financial constraints.
A SPACE TO BE
Extreme Kids & Crew is a place where families can meet, play and connect outside of their homes and outside of doctors’ offices. They provide inclusive community experiences and the kinds of social activities and play in which friendships flourish, including after-school and summer camp programs, open play, classes and social groups, parent groups, and monthly art and special events. They do not offer therapy, but a play-space where families share resources, stories, tears and laughter while children play and take part in inclusive arts programming that is open to all members of the family. They consider themselves simply, A SPACE TO BE.
They served 375 families in 2018 and 83% of their families reported that their child feels a sense of belonging at Extreme Kids.
"WE FOUND A SPACE WHERE, AS PARENTS, WE COULD FEEL THAT RUBEN WAS FREE TO BE HIMSELF. WE'VE MET OTHER PARENTS WHO HAVE KIDS WHO ARE EXTREME IN SOME WAY, AND THERE'S JUST A NICE COMMUNITY FEELING."
To make a meaningful impact through Extreme Kids or Crew or other high-performing charities, tell us a little more about yourself and we’ll be in touch.
Photo credit: Filip Wolak
KIDS WITH DISABILITIES SHOULDN’T HAVE TO FIT INTO SOCIETY’S MOLD
At the upcoming INCLUDEnyc Fair on Saturday, January 26, families can meet face-to-face with over 80 summer camps, afterschool, weekend, arts, sports, social, and recreational programs, including Extreme Kids and Crew, who offers weekend programs and summer camp to kids with disabilities.
Located in Red Hook and Ridgewood, Extreme Kids has weekend, weekly and monthly programs, including music classes, parent support groups and social clubs for girls and teens. During Open Play on Saturdays and Sundays in Red Hook and Saturdays in Ridgewood, kids can play in a sensory gym on play equipment that is normally reserved for therapy.
Many of these programs embrace the participation of families, encourage socializing, and help build community. “Extreme Kids is an open, welcoming place. We believe society can learn a lot from the children and families coming into our space. Kids with disabilities shouldn’t have to fit into society’s mold. Instead, classrooms and the broader community should be more open to neurodiversity,” says Executive Director Caitlin Cassaro.
Extreme Kids’ summer camp, based out of the Red Hook location, typically is for a small group with a 1:3 staff ratio for six weeks. Children enjoy field trips and participate in various activities, including art, music, dance and movement. “We want our summer camp to be accessible to those who need it, so we use a sliding scale and is completely free to eligible families,” Caitlin explained. This August, they will also present a two-week summer camp based out of the Ridgewood location designed for children with higher-needs.
Extreme Kids will be attending the upcoming INCLUDEnyc Fair. “The Fair has been valuable for us. We can reach new children and families and have the opportunity to connect with other partners,” Caitlin said.
- Carly Wolff
For many of us the end-of-the-year is a time of giving, and to that end we’re here profiling three Woolfers doing extraordinary good in the world.
Learn more about the great work of Caitlin Cassaro with Extreme Kids & Crew, Dana Marlowe with I Support the Girls, and Jen Losey James with Crisis Text Hotline — find out how you can get involved, too!
Can you tell us what Extreme Kids & Crew is and how it works, how you support your population? Extreme Kids & Crew provides play-spaces for children with disabilities and their families. We were founded with a simple concept in mind: to be a safe, fun and judgement-free zone for the whole family. Play is vital to every child’s development, but when you spend two hours commuting to school and there are an unending number of provider visits (doctors, therapists, etc.), it can be hard to find time to have fun as family.
We provide inclusive arts and play programs to children with any disability and/or neurological differences, and their siblings, their friends and their caregivers are welcomed and encouraged to join. We host weekend classes, open play in our sensory gym, special events throughout the city, caregiver meet-ups and workshops, and after-school and summer camps. Our programs are free and we work hard to connect with families who are living in underserved areas of NYC. We are the place that the families whom are often discriminated against can come and relax, meet other families in similar situations, and where the children can be themselves and develop a sense of self-worth and confidence in their abilities.
How long have you worked there and how did you get started?
Like many families, I discovered Extreme Kids shortly after my second child was diagnosed with autism. Until age two Shane was called “a good baby” for his lack of need, but he had begun randomly falling out of chairs, running into walls, and complaining that the bright sun was too “loud.” Our beautiful, once-cheerful boy was no longer a child most parents wanted at birthday parties or playdates. The usual sibling strife became extreme and near impossible to navigate.
As Shane changed, my husband and I became stressed out, worried, confused, and lonely. Whether or not this was self-imposed or the result of our friends pulling away isn’t clear to me, but the feelings of isolation we felt became overwhelming.
In a desperate search for something I wasn’t even sure existed, I came across Eliza Factor online. In an open letter, she wrote about her experiences with her beautiful disabled son and two beautiful non-disabled daughters. Her letter made me cry loud, body-rocking, choking sobs. It was not about “oh how sad it is that my son is different,” but more like “all my kids are wonderful, why can’t we join the party? Where can we BE?!” I didn’t realize at the time how deeply essential a sense of community is for everyone’s well-being. Hmm, I wonder if any Woolfers know what I mean?… ha ha.
I contacted Eliza and she immediately replied. Turns out there was this little space she called Extreme Kids & Crew and they had gatherings every weekend. We went. Of course, we went! This little room with big pillows and padded floors immediately became so much more. At Extreme Kids, Shane had fun. His sister had fun. We all had fun together! Kids and other adults played with him while we sat and collected ourselves. I cried again, but this time happy tears. Extreme Kids made me feel like it was going to be OK, and that we were not alone. So what if Shane flapped and yelled and ran around the room crashing into, luckily, padded walls. We had found our community.
I started volunteering, helping to create a financial file and put some systems in place, all non-interesting aspects of running a little start up, except they are interesting to me. I was, at the time, the CFO for Friends of Firefighters (a nonprofit offering private support and therapy to members of the FDNY). Prior to that, I created a little freelance business helping start-ups and nonprofits put the behind-the-scenes systems in functioning order so that the amazing founders would be free to continue growing their vision (and not worrying about, for instance, payroll tax or annual audits.
In the spring of 2013, I interviewed for the job of Executive Director/COO of Extreme Kids & Crew. The organization was growing and turning into a business, something Eliza was not interested in managing. The word went out that a search was on and I happily threw my hat in the ring. I stepped into the role of Executive Director during the time I facilitated moving the organization into PS 15 in Red Hook. The past six years have been amazing. I have never loved a job like I love this one.
WFUV is a National Public Radio affiliate station based in New York City. WFUV features a quarterly Public Service Campaign called “Strike a Chord.” Their goal is to spotlight issues important to communities throughout the Tri-State area, from the environment, to health care, to veterans affairs. Their focus this season is "autism awareness." By focusing on a specific issue each quarter, WFUV hopes to make a big difference in raising awareness about important matters, getting people more involved in their communities and simply letting people know help is out there.
:05 My name is Leigh Reid and I'm the director of development and communications at Extreme Kids & Crew.
:11 At Extreme Kids and Crew we cultivate welcoming, accessible spaces where kids with disabilities and their crew create a supportive community through the arts, play and conversation.
:24 At an average playground there can be a lot of bigotry and fear about disability. When you provide a space that is not just open to having differences, but encourages people to be who they are when they come in, that makes a happier child, and that happier child will become a happier adult and more well-adjusted.