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MyNDTALK - Strange Beauty - Eliza Factor

Originally aired, Tuesday April 10, 2018. Transcript available below.

A unique and hopeful story of how one woman and her family were transformed by her child's multiple disabilities and inability to talk. ... It is the story of a mother and writer and the illuminating effect of imagining the world through the eyes of her beautiful, charismatic, and nonverbal son, Felix. ...  As Felix grows bigger and stronger, his assaults against himself grow more destructive. When his bruised limbs and face prompt Child Services to investigate for abuse, Eliza realizes how dangerous her home has become.

 

MyNDTALK:                            00:19                       Today's guest says that disability is a naughty and confounding term. We'll find out why in just a minute. Hello everyone. This is Dr Pamela Brewer, welcoming you to this edition of MyNDTALK. I'm very pleased to welcome Eliza Factor. She is the author of the acclaimed novels, The Mercury Fountain and Love Maps and she and her husband have three children, the eldest of whom is multiply disabled. She is founder and president of the board of Extreme Kids & Crew. We'll find out more about that in a bit. Eliza Factor, welcome to MyNDTALK.

Eliza Factor:                          01:01                       Thank you so much for having me.

MyNDTALK:                            01:03                       Now, Eliza, why is disability a naughty and confounding term?

Eliza Factor:                          01:10                       Well, OK, here I go. Take the word disability. What does that mean? It means something. You cannot do the system's ability. And , we, we use this term to define about 20 percent of the population, but when you think about yourself, , you know, you will probably be able to come up with quite a few things you can't do. They may not be, they may not be, completely screwing up your life and making it very difficult to get through the day, but they can be defining parts of you. , I mean, maybe you always put your foot in your mouth, but you can't read social cues very well. Maybe you can't keep your left and your right straight. We all have like these little disabilities that sometimes become quite enormous. So why is one person considered disabled? Say FDR, or, you know, Stevie Wonder. Some of these people who are so powerful and so, they've made so much out of their life and they really contributed to the culture, why do we use the term disabled for them when, you know, I need to talk politics.

Eliza Factor:                          02:51                       We don't use it for our president who, you know, who clearly has some learning disabilities. Who gets labeled disabled and who doesn't? It's interesting to me. I started and it's asking those questions because of course my son has multiple disabilities and are very obvious. He has paralysis of many of his limbs, he's autistic, he doesn't use language, in any sort of conventional manner whatsoever, and he needs 24 hour care just throughout the day, just so that he can eat and brush his teeth in the bathroom and stuff like that. He's clearly disabled and yet when I'm with him and we're like laughing at the way the wind blows or something like that, he feels totally normal to me. And like we, we don't, I don't think about them as disabled. So, you know, it seems to be a disability is just one of those terms that kind of encompass all of us, and that pop up at certain moments in our life and then, and then kind of simmer down at others.

MyNDTALK:                            04:14                       I think just as a people we've gotten to be very good at ignoring what's right with people and focusing on what we perceive to be wrong when it suits our purposes.

Eliza Factor:                          04:29                       Yeah. I guess also the other thing about disability is it just has such a negative connotation because of that dis- and people in the disability movement are trying to just claim that word and say, "So? This is us and we're proud of it." Sometimes the things that would seem like disability can lead to new ways of seeing the world and creativity and stuff like that. I mean like the deaf community doesn't consider themselves disabled at all because they love their language, particularly these are the deaf activists, not every deaf person. So it's hard to even know what one person will see as a negative but another person sees as a positive. It's always shifting.

MyNDTALK:                            05:29                       It is always shifting. And one of the things that I think about, even if someone has a falls, for example, and has a sprain or a break and they're walking around on crutches or they're temporarily mobility impaired in some way. It's really interesting to notice the difference in how people respond to that individual when they perceive them to be disabled. We still have work to do in that area.

Eliza Factor:                          06:10                       (laughter) Yes. That's for sure.

MyNDTALK:                            06:15                       At the beginning of your memoir, which is entitled Strange Beauty, you talked about the many feelings that you experienced as you connected to the notion of being a mom, even from prior to being a mom. I want to step back to 9/11 because that certainly had an impact on your wish to be a mom. Talked to us about that.

Eliza Factor:                          06:51                       Yeah. I think 9/11 had an impact on a whole bunch of people of child rearing age. Cause apparently there are a whole bunch of 9/11 babies and I was one of those people creating a 9/11 baby. My first love has always been writing or the arts. I think a lot of my creative fire was directed towards that, so I didn't have a strong biological clock ticking. So they say. I actually really love children and love playing with them. But just the idea of raising, I understood the work it took, raising a child. I had done a lot of babysitting and stuff and just liked to be the auntie and the babysitter just get back into my work.

MyNDTALK:                            07:45                       So taking one home was not your thing?

Eliza Factor:                          07:51                       I really was aware of the amount of work and trauma and pain of childcare and loving, you know, being a parent. It wasn't a surprise to me, but the other mothers were like, "this is really hard." I know. So it didn't really appeal to me as a great thing to do because you need a certain amount of hours a day to write. So I was in love with my then boyfriend Jason and he worked right next to the World Trade Center. And I was writing at the time, and the phone rang and I hardly ever answer the phone when I'm writing, but it was a good friend of mine. I picked up the phone and she said, "Look out your window."

Eliza Factor:                          08:53                       And I did. I mean we lived right across the river. It was a still a beautiful blue sky and there was the World Trade Center and it looked like a match stick. There it was, these towers and there was just this fire at the top of one. And so I went up to the roof and I kind of was watching with a bunch of construction people, and the papers from the towers were blowing up over the river and the rooftops of Brooklyn and the head of the construction crew and I were, you know, we were, we were young, we were 30, but we were old enough to be kind of devastated cause we knew what that meant for the people inside. And the younger kids on a construction crew were just kind of like running after the papers, "We're going to sell these on eBay." I mean they were just so excited.

Eliza Factor:                          10:05                       I just remember this moment with this guy I didn't know, just watching the world changing. And then I was like, "JASON!", because he worked right next to there. And so I said, "I gotta get Jason." I called Jason, he didn't answer and I was just kind of ripped with this idea that I had to get him. And so I decided to walk.

MyNDTALK:                            10:05                       Dare I say, that was smart?

Eliza Factor:                          10:39                       You know, you're in shock. I start walking towards the bridge and the implosion happen. And so the air became opaque. I mean, everything was smelling terrible,  and you really couldn't see more than 10, 20 feet in front of your face.

Eliza Factor:                          11:12                       People were just streaming out of the bridge and you couldn't have walked against that crowd. And, and by that time I was like, "I don't think I'll be able to find Jason." So I walked back to our apartment and I just walked in circles pacing and praying. I had another boyfriend who went missing for like a year, so I was just, I was like, "Oh God, I can't, I can't do this not knowing if my beloved is alive or dead without, you know, I can't do it again." So I had this deep wish that I had Jason's child because then I'd still have a part of him.

MyNDTALK:                            12:08                       So let me just interrupt for a second.

Eliza Factor:                          12:15                       If he comes back we're having a child, it was just a very clear, we have to have a baby.

MyNDTALK:                            12:15                       Let me interrupt you for a second cause I just want to make sure the audience understands prior to your being in a relationship with Jason, you were actually in a relationship with someone else who was kidnapped and it was for a year. You had no idea where he was or if he was alive or dead. And in fact their predictions were that he was dead. So to have this then happened with Jason where in that instance you had no idea if he was alive or dead.

Eliza Factor:                          12:51                       Yeah, yeah, yeah. It was just such a certain kind of feeling that I wasn't going to let it go. Jason, when he came back and I said we need to have a child was like the OK, sure. There wasn't any, there wasn't any discussion, but that would be a good idea.

MyNDTALK:                            13:12                       So you married, you had a child, you had Felix.

Eliza Factor:                          13:12                       That was Felix. Exactly.

MyNDTALK:                            13:23                       One of the things that you talk about during the pregnancy, which I was really quite frankly impressed by in and pleased to see where the ambivalent feelings that went along with being pregnant and about to be a mom and your comments about people saying congratulations. And that's what people typically say, but there's so much involved in getting pregnant, being pregnant, staying pregnant, and then being a mom for the rest of your life. And a lot of times people aren't comfortable with really talking about those ambivalences. And you were, you did.

Eliza Factor:                          14:02                       Yeah, I think I felt lonely because I was only hearing about the good stuff. I find the bad stuff interesting and not bad. I guess that's what I'm saying. I feel like it's so trite when people... I remember right after Felix was born, which was a hard time, not because he was disabled, he was just colicky. It was hard to sleep and I know I kind of stbled out on the, he was like two months old, so he was kind of the total transition to motherhood phase. I was not happy at all. I had this crying baby and I couldn't sit down or he'd start screaming and this lady came up to me and she goes, "honey, treasure every moment."

Eliza Factor:                          15:08                       I just wanted to kill her. I was like, "You treasure every moment. I want to take a nap or I want to treasure a bath. But, yeah, there's a lot of that honey talk that , I mean life is beautiful and hard and filled with incredible... I mean I love life, but it's just not always pretty and not always sweet and not always gushy. And so when you only hear that stuff, it can get oppressive I guess, so I wanted to voice all the stuff I was feeling.

MyNDTALK:                            15:59                       Well and again, it's just so important because as you say, when people are constantly telling you how wonderful your condition is and how wonderful you are supposed to feel, and typically certainly new mothers, first time mothers have a range of feelings and to not really be given permission to experience what you know internally you are experiencing is very difficult. So again, in Strange Beauty you made that clear, so thank you.

Eliza Factor:                          16:31                       You're losing a part of yourself. I mean that's just what happens when you become a parent. You are no longer an individual, you're really  losing quite a bit of your freedom. Freedom was one of my great defining loves and how I lived my life for 14 years. So to lose that it's not the easiest thing. Yeah, exactly what you're saying. That's, that's the mourning, the loss of freedom.

MyNDTALK:                            16:31                       Now  also came a point during your pregnancy, where you contracted the Chicken Pox.

Eliza Factor:                          17:24                       Hmm.

MyNDTALK:                            17:25                       Not a happy moment.

Eliza Factor:                          17:30                       That was a terrible moment. Compounded I got two of my novels rejected on the same day. That it's like such a bad day. How could so many kicks, come from so many different areas a matter me down

MyNDTALK:                            17:30                       All on the same day no less.

Eliza Factor:                          18:00                       Yeah. All on the same day. It was just terrible. And then all of a sudden I was aware of Felix, you know, and would he be able to withstand the chicken pox? And the thoughts of the novel that stuff went away and I was really, really worried about him. But he survived thankfully.

MyNDTALK:                            18:32                       We're going to take a break but when we come back as we continue our conversation about Strange Beauty, which of course is your memoir, I want to pick up with the, it almost sounds like a cavalier sort of casual options that were given to you as you progress through your pregnancy. So we'll pick up there in just a moment.  

MyNDTALK:                            20:36                       Eliza as you progress through the pregnancy, you were concerned about the potential impact of the chicken pox on your pregnancy and for the most part, doctors told you to worry, but they were offering you the option of terminating your pregnancy. What did you think about that? 

Eliza Factor:                          20:58                       well, the doctors were concerned because of the sonogram, mid term that I had, which was rather late because of the chicken pox. I couldn't go into the hospital for like a couple of weeks after they went away because it's a highly contagious disease. When I finally went in, the ventricles in Felix's brain were a little asymettrical, which is a worrisome sign according to the doctors. But there asymmetry was, it was within the range of normal, it was just towards the not normal. So they were like, "you know, it's probably OK," but then they also had this low amniotic fluid. You could tell, like I couldn't get out of the hospital for five hours because they kept on wanting to do a new test, at the end of all these tests they were like, "it's probably fine," but you know that you can read body language of doctors. They weren't saying, "Ahh great, you're fine."

Eliza Factor:                          22:24                       I said, I don't want to keep monitoring this, and so then before I could leave the hospital, I had to go see a genetic counselor, and I guess her job was to let me know that I could still terminate the pregnancy if I wanted to. She was a kind woman and she wasn't advocating this or anything, but she just wanted to let me know that was an option because I think there are women who needed more. I don't even want to go into why this is, but I had by this time Felix was a very clear presence inside me, like I had this relationship with him.

Eliza Factor:                          23:23                       Not that I would have put it in those words then, but I had this feeling of who he was and something of his sweetness and his energy. I can still see to this day it wasn't an illusion. I just remember crossing my belly with my arms. I'm here to protect him from these suggestions. I'm a pro-choice woman. I don't mean this to be taken against abortion, it's just like I could feel this child. So the idea of having an abortion for a child that I had wanted to have, you know, he might be a little bit weird. It didn't compute.

MyNDTALK:                            24:29                       So how far along were you when your pregnancy, when that option was told to you?

Eliza Factor:                          24:36                       I think it was like four and a half months from. It would've been considered a medical reason. I think she said that I'd have to go to Colorado or someplace, if things, instead of getting better, staying the same, got worse. I wouldn't be able to do it in New York state pretty soon. And so I can't really remember the details because I was in that kind of shocked state of mind. But that was the general gist.

MyNDTALK:                            25:11                       In a lot of ways it's not that important because you were having Felix, he was coming. Period. And come he did. Now there came a time after Felix was born when your husband Jason, started to be concerned about your son's developmental progress, but it wasn't clear to me that you shared Jason's concerns at that time.

Eliza Factor:                          25:58                       Felix was born early and there was this strange pregnancy, and I'm kind of strange myself. He wasn't developing like other babies do, like he was floppy, and he wasn't interested in rattles and mobiles and stuff like that. But I was just like, "oh, we're all different and we don't all develop exactly the same way at the same time." I just basically thought that he would be fine, meaning that he would be able to walk and talk and stuff. It'll just take him longer and not to stress out about it and let him grow the way he's growing. But Jason is a little bit more methodical and a little bit more respectful of time tables and such.

Eliza Factor:                          26:55                       He said maybe we should talk to some doctors about this, and we did and the doctors agreed with Jason and I wasn't going to step in the way of helping Felix. And then pretty soon I saw that his, his lag or whatever, he wasn't getting more mobile. I mean, in my head I thought he would kind of naturally start crawling and stuff and that just wasn't happening. It just took me a little bit longer to see the situation. Jason saw it first.

MyNDTALK:                            27:32                       It's not uncommon when couples have a child who has the kinds of challenges or even fewer challenges then those that Felix had and has, to really find themselves pulling apart at the seams. But that does not seem to have been the case between you and Jason.

Eliza Factor:                          28:04                       Jason and Felix had and still have a really, really strong bond. Jason was the one who could get him to stop crying, get him to sleep. There is something in Jason that Felix just loved, loves, but I'm thinking about as newborn, and that brought out such a tenderness and such a strength and a real selflessness in Jason, that it kind of made me be a little bit better myself. I can't let my husband without me. It was very hard having Felix, there wasn't much sleep involved for about 10 years and there was a lot of hospitals and there's a lot of , "Oh God, what to do?"

Eliza Factor:                          29:17                       It was really intensely, physically and psychologically difficult. Jason, I like, we kind of would take turns being the strong one, Jason would be so great that I like when I couldn't cope and then I would kind of go "OK, he did that, I can do that." It works and it was, it was just a natural process. I mean I think one of the reasons I wanted to have kids with him in the first place is that we just fit together very easily without, talking about it, we just, we had that kind of connection.

MyNDTALK:                            30:05                       In the summer of 2016, you received a call and you had a conversation with his speech therapist and his Special Ed teacher about some challenges that Felix was exhibiting at school. What were the issues that you were dealing with with Felix? Was he able to walk unattended? Was he able to hold his head up? What were his speech patterns like?

Eliza Factor:                          30:37                       That was funny. Felix was three and a half, four years old, and was in a preschool for kids with disabilities and he at that point could walk with assistance. He had a little walker he'd scoot around on. He was really cute and he couldn't go too far because it was exhausting for him, but he could go a couple blocks if he was on a roll and the walker also allowed him to kind of go where he wanted in the house. He all of a sudden could go to the door knob and study it for 15 minutes. He didn't speak and so, how would I have known to help him walk to the door knobs to study it.

Eliza Factor:                          31:33                       It wouldn't have occurred to me. I would've been like, "do you want a cookie? Do you want to the bathroom or something." So it gave him a lot of independence that walker and it made him quite happy. He had like six signs that he used at that time. Like, yes, no, I want, music. And uh, about five signs. There was another one I'm forgetting, but he didn't really say words. He would hum and had a beautiful voice and he'd laugh and he'd make all kinds of very subjective voices. He was really just in a very happy in a curious period of growth. It was a great joy and I spent so much time kind of pondering his lack of language because when he was like, one, two, three, three and a half, I had been like, yeah, I've been hoping that he was going to start to acquire language.

Eliza Factor:                          32:47                       And in the beginning it had seemed like, "oh, what a tragedy" if he can't because his movements are so compromised. He can't like draw or write. He loves music, but he doesn't have the control of his hands to play an instrument, and he can't run or jump and stuff. So you know, if he could kind of navigate through the world of thought with language and math and stuff like that. There's, you know, there's plenty of movement there, it's just internal. I'd been really, really, really, really, really, really hoping that that would develop. And , it wasn't. And the strange thing was about, by the time when this was happening at the school,

Eliza Factor:                          33:47                       I wasn't worried about it anymore. It doesn't matter. And I think I realized that because he was just so interested in the world around him and he was critically thinking about things and his eyes were really like lit, you know, and his appreciation of it. Just the wind or the movement of a swing or the taste of ice cream or other things that I don't even know because he can't articulate them, were clearly enough and more than enough. And I realized that his sensations about the world were probably, in some ways, deeper than mine just by looking at his reactions when he was really, really interacting with the world. So it was a really fascinating time to mix. I was starting to understand that so much of what I thought , like so much of the community could have power of language or let me rephrase that.

Eliza Factor:                          34:55                       I had thought language more important than it was because I realized how much experience could be communicated without it as Felix grew older. He communicated so much with me through his body, and the communication was really deep and really satisfying. Who needs language? And then I got this call from his school that he had been started off the school year so receptive, a happy student. And something had shifted over the summer and he was the fowl and in a pissy mood and wasn't interacting with his therapists and, you know, had retracted and he was just acting, you know, it didn't sound at all like the boy at home. They were concerned and worried that he was having seizures and I just remember kind of trying to keep myself together for those teachers as I was getting in the car and just bawling my heart out because I couldn't ask Felix for his side of the story. We had this wonderful communication about the experience of breathing, but I couldn't ask him why he was doing what he was doing at school.

Eliza Factor:                          36:33                       And that loneliness of not being able to understand his loneliness. Really, really got me at that moment.

MyNDTALK:                            36:48                       At that point. What had he been specifically diagnosed with?

Eliza Factor:                          37:00                       His initial diagnosis was Periventricular leukomalacia, which means basically that his brain, it's kind of an umbrella term, but it's his brain had been damaged, damage had been done to his brain in your utero. Later on he would have diagnoses of autism and cerebral palsy. All these are all kind of grab bag terms, but the cerebral palsy means that there's a neurological problem with the muscles. You can't control all of the muscles and your body can get rigid or paralyzed or floppy. It affects people differently. Some people with palsy, can move around fine and it doesn't affect your cognition at all. But the autism does. So in another age he would have just been called brain damaged. That would have been that. We are living in the age of many diagnoses. So those are his, his main ones.

MyNDTALK:                            38:13                       It got to a point where he was actually screaming so much and hitting himself with such force that you had to take him to the hospital.

Eliza Factor:                          38:25                       Yeah, he did. That didn't happen until he was five and a half. He was really a magnificent and happy companion up until then. And then I was pregnant with our third child. I was about seven or eight months pregnant and we were just kind of having a normal Sunday. We had gone to the park and the playground with Miranda and Felix, Jason was home. So it was me and Jason taking care of the kids and talking to the neighbors and the sun was out and all was well. We came back to make dinner and I was sitting next to Felix on the couch and talking with Jason about something and all of a sudden Felix just screams like he'd been shot. I mean, it was just so, so out of the blue, this horrible bloody scream. Everything dropped.

Eliza Factor:                          39:33                       We were all just like, what's going on? And he started hitting himself on the side of the head. Nothing like this had ever happened before. He'd cry or been angry or something. But this was unlike anything we'd ever heard and certainly not him hitting himself. The pitch and tone of scream was unlike anything we'd heard. We tried getting him food, giving him drink, holding him, putting on his music, trying to figure out what would make him happy again. And then he just stopped, cold, stopped and everything was fine and we were still kind of shaking and it was like, OK, well let's make dinner. And then a half an hour goes by and it starts again. So we're just thinking he must be having the most terrible internal pains you can imagine that we'd take him to the hospital and got some neighbors look after Miranda and went off. I can't remember which hospital it was right now, but we took him to the hospital and the doctors were really alarmed because of the intensity of the screaming was just so apparent to everyone. But they couldn't find anything.

MyNDTALK:                            41:07                       It's so hard when, as a parent it's clear that something's wrong, and the doctors can't find anything. Eliza, we're going to take a break and we'll be right back and we'll pick it up.

MyNDTALK:                            42:24                       So I want to switch gears a bit. We've been focusing on you, in fact you went on to have two additional children, Miranda and Penelope, otherwise known as Happy. And I know there were folks listening who are wondering what those two pregnancies were like for you? Were you afraid at all?

Eliza Factor:                          42:55                       When Felix was like two or three, my wonderful pediatrician was like, in her chatty way, kind of talking about how kids with disabilities do well when they're in big families. And had I thought about having another child and I kept on thinking that maybe I would prefer to have another child when Felix could walk because then I wouldn't have to carry him all the time while I was pregnant. I guess I must have gotten pregnant with Miranda when she was two and a half because she was born when he was three and a half. It occurred to me that, , we probably should have another child and I think Jason and I both came from families with two kids and, and so that just kind of seemed like the natural number of children to have.

Eliza Factor:                          44:06                       I was nervous, but then again, I loved Felix so much that I was like, I was pretty sure I would love this child and if I had another child with disability, I would love that child too, and then we didn't, we had Miranda who was a very healthy, you know, typical cutie pie and it was so easy. I think first of all it was my second child. And there just a lot less hospitals, like he couldn't nurse and she could, you know, she just, she picked up things quickly. So that was a real joy and that was kind of what I thought would be the end of it.

Eliza Factor:                          45:03                       But then I was taking Felix to the hospital for some procedure, and she was in a little baby carrier on my chest, I was pushing Felix around and this woman who worked at the hospital, started complimenting me on Miranda and Felix as though, particularly on Miranda and was saying, "oh, I hope you have another." What was going on, like, why are these people telling me to have more children. But she, uh, just this woman had grown up with a older brother with autism in New Jersey, you know, before autism was commonly understood, you know, people didn't have much awareness of it at that moment. She had a younger sister and she just said that made her life so much better because there was this other child who understood the strange dynamics in the household. She just didn't feel like she could talk to anybody else but she had a sibling who just really got it.

Eliza Factor:                          46:18                       Her words just kind of stuck with me and I heard that from other people too. Jason makes enough money that it wouldn't be difficult to have three children and so I decided to try. The awareness of how you don't know what you're getting is very high when you have a child like Felix. You can't engineer siblings to be friends with each other either, unfortunately. But so far it's worked out really well and Miranda and Happy really do get along well. They enjoy Felix, but they also have their world together. T there was an awareness, but it might not work out well but you just do it anyway. I mean, if you can and you want it.

MyNDTALK:                            47:30                       So what are their ages now? All the children.

Eliza Factor:                          47:38                       Happy is eight. Miranda is 10 and Felix this 14.

MyNDTALK:                            47:39                       OK. So for the girls, do they have any particular concerns or thoughts? I mean, a lot of attention and energy of necessity goes towards Felix. Is there anything that you've discovered with them or that you would recommend to parents who have children who are differently abled as well as children? Uh, like Happy and Miranda.

Eliza Factor:                          48:11                       Every child is so different. I mean, I think it's always just kind of listening to each child and just making time to listen to each child, to take cues from them and observing them too. I think there's different ways you can apportion your attention. I was very lucky in that we had a lot of help. A lot of like babysitters because of Felix's kind of needs. He just needs 24 hour care and so I couldn't physically take care of all three all by myself. We'd have babysitters giving him a bath and stuff and I'd be giving the [inaudible] to the girls and you know, like there was time where it was just me and them, and that was nice. Every family has such different circumstances. I don't know what the advice would be except for to listen and ask for help, you know, there's different ways of getting help but you need more disability just means more interconnectedness. You need help. Sometimes it's financial help or sometimes it's another person there to help your child, and give your child a little bit more space, more room and that will give you more space and more room to breathe.

MyNDTALK:                            49:49                       You know, it's interesting, I mean, you went from not really being sure that motherhood was your thing, to having three children and then because you clearly had nothing to do [sarcasm], you created Extreme Kids & Crew.

Eliza Factor:                          50:04                       Yeah, that was one of those ideas that came very much like an idea for a novel, it kind of just comes in and just planted itself in your brain and won't go away until you do something about it. I was thinking of it in the beginning as my living novel instead of a written one. And obviously, it wasn't just me. I mean it was a community center. So it was the community that started it. I just had the initial compulsion and I had the living room to ask people over to brainstorm with me and then it took over from there. There was so much enthusiasm around creating a space for families with disabilities that wasn't institutional, but it was just a place to play and meet one another and, you know, talk and hug and cry and dance and scream and make music and make art and not just the kids, but the parents and the siblings. There was so much enthusiasm for that that it just took off.

MyNDTALK:                            51:19                       So what exactly is the goal of Extreme Kids & Crew?

Eliza Factor:                          51:23                       It's a space to be. It's a public space. I mean, right now we have to have these spaces in public schools. It's like a sensory gym and art space where but it's open to anybody who's child identifies with disability basically. It's for families to come and it's kind of like a communal living room where we can just meet one another and play and be ourselves and not have to explain ourselves or apologize for ourselves. So we can just be ourselves and see other people navigating this world in somewhat similar circumstances. It's so powerful, just to be in a room with other people who get it and appreciate you for who you are.

MyNDTALK:                            52:24                       Where are the spaces located?

Eliza Factor:                          52:27                       We have one space in a title one public schools in Red Hook, Brooklyn and Queens and we're, we're planning on expanding to have one space in each of the boroughs in New York City. I'm overseeing as the board director, but we have an incredible executive director who's really good at business. This is why we've gone as far as we have, but we have a collaboration with the department of education now where we kind of, they give us a nice big space in a title one school and we transform it into this kind of beautiful play area, with equipment that's really a good for kids with autism, adhd. But really, but it's just designed particularly for them. And a big open area that's good for Yoga and dance and music and making art.

Eliza Factor:                          53:37                       The therapists and special ed teachers from the school used the space during the school day, with their kids and that's really precious for them because a lot of times kids with special needs are taken out in the classroom, they're doing exercises in the hallway and stuff like that and it's know it's humiliating and othering. And so instead they get to go to this really cool room and not everyone gets to go to when they get to play and it celebrates them instead of marginalizing them. And then on the weekends we just opened up the space to families from all over the city and we congregate there. And do arts open play, what have you.

MyNDTALK:                            54:24                       It sounds wonderful and it's free.

Eliza Factor:                          54:32                       I could see before I started Extreme Kids with Felix, my girls connected me to a lot of parents like me. They were born into that world. They fit into that world. And so they kind of connected to more people in that world, fine. But Felix, kind of passed me out of that world and connected me to a much wider sphere of humanity, which made me really happy. There's just something about him and the disability in general that kind of leaps across these chasms of race and class like you, you see him and he scares a lot of people and the people he doesn't scare, just come to him and they come to me and they say hi. And it's so liberating in some ways. I wanted to use disability to break down these social barriers that are so destructive to all of us, so that's part of what makes the place so special. But, you know, obviously it had to be free because a lot of what separates us is money.

MyNDTALK:                            55:48                       How does one get more information about what you're doing? And also about Extreme Kids & Crew as well as Strange Beauty.

Eliza Factor:                          56:01                       Well, you can go to my website, elizafactor dot net that has links to everything. You could also go straight to the extremekidsandcrew.org website, which explains our program well. And you know, anybody from New York is obviously welcome to come visit the spaces. Also, the other thing we have on that website is a do it yourself tool kit to create this kind of program in your community. Obviously it's not every community but, it will grow differently, but I just gave a pretty technical approach. I mean there's a chapter that's kind of from Strange Beauty in there that explains my growth, over the course of setting it up, and then some of the practical tools like the budget and stuff like that that we used. So I do get letters from parents from around the country and say, how did you start this? And so I just kind of put it all down in one place and obviously it wouldn't work exactly as I did it in other places, but it might give parents ideas. So that's free and it's there on the website.

MyNDTALK:                            57:22                       That's wonderful. And I absolutely recommend folks to take a look at it, it also has the list of equipment and everything else, so it's wonderful. Eliza Factor. That's e l i z a f a c t o r, author of Strange Beauty, a memoir. Thank you so much for joining us today and for your energy and for all the work that you're doing, not only with your child but with children really around the world who will be touched by your work and by your energy.

Eliza Factor:                          57:54                       Thank you so much. It's been wonderful being able to help these kids and be helped by them.

MyNDTALK:                            58:03                       Indeed. And folks, thank you for joining us today. On this edition of mind talk. My talk is available to you daily as an educational public service. It is not intended to replace any work that you might choose to do with a medical mental health or other professional [inaudible] available to you on demand by going to m y, n d t a L K dot o r, g. You can also download the mind talk APP. The free mind talk app from itunes or Google play mind talk is a, again, it's available to you on demand. You can listen to it whenever you choose and I do hope that you will feel free to do so and send an email to me with any of your questions or comments to Pamela p a m e l a@mindtalk.org. Again, that's m y n d t a L K dot o r, g Montauk is produced by Jim Brown and 26 by [inaudible] communications. And I would like to remind you that if it's unacceptable, it's unacceptable.

 

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AuthorLeigh Reid