In this episode, Claude Winn shares her journey raising her twenty-year-old daughter, Maya, who was diagnosed at an early age as being on the autism spectrum. Claude talks about learning how best to support her extraordinary child; her explorations into alternative therapies; the advocacy needed to ensure Maya’s right to participate in activities available to so-called typical students; and the importance of trusting and caring for herself all throughout the process.
About Claude Winn
website: http://claudewinn.com
Insta: @cwinnart
Song Credits
How Far I'll Go
written by Auliʻi Cravalho
© 2016 Walt Disney Records
LINKS FROM THE INTERVIEW
https://www.autismspeaks.org/verbal-behavior-therapy
https://www.autismspeaks.org/floortime-0
[00:00:00] Carole Blueweiss: Welcome to Wisdom Shared, a podcast for families of kids who have been labeled as different. We listen to stories of triumph and hardship, of laughter and tears, of struggle and breakthrough. In this episode, we will meet Maya, now 20, who was diagnosed at an early age as being on the autism spectrum. I met Maya and her mother, Claude, during the pandemic when a mutual friend suggested we connect for a series of intensive coaching sessions utilizing the Anat Baniel Method of NeuroMovement.
[00:00:36] I realized early on that Claude and Maya were a great team and that they have so much to teach other families, healthcare workers, and teachers. So I invited Claude to be my guest on Wisdom Shared, and she agreed. Claude, like Maya, has many talents. In addition to being the mother of Maya and Jake, she is an abstract painter who was born and raised in Montreal to parents who immigrated from Iraq and Iran.
[00:01:02] Art was the family religion and her Persian mother introduced her to every element of classical and modern art. Claude completed her bachelor and master's degrees in art history, film, and literature. She then spent two decades studying and practicing Eastern philosophy and yoga. Several years ago, she transitioned from teaching yoga to painting.
[00:01:24] Claude's work is inspired by a desire to communicate her internal experience of life through color, movement, and form. She lives with her husband, Dan, and her two kids, Maya, who is 20, and Jake, who is 12. Music has always played an important part in Maya's life. She will kick off this episode and conclude this podcast with her own rendition of How Far I'll go from the Disney film Moana.
[00:01:50] Maya Winn: [singing] I've been staring at the edge of the water, long as I can remember, never really knowing why. I wish I could be the perfect daughter. But I come back to the water no matter how hard I try.
[00:02:12] Claude Winn: She loves to sing. So even when her singing lessons, her vocal lessons, if she's not happy, it will sound flat. And if she's happy, it'll sound angelic.
[00:02:21] Maya Winn: [singing] I wish I could be the perfect daughter.
[00:02:24] Carole Blueweiss: Tell me about your kids.
[00:02:28] Claude Winn: They are the center of our house and my life. My older daughter is Maya and she started our parenting journey 20 years ago. She is an amazing human. Right now, she's doing her Zoom school and she's doing it pretty independently, and I'm really proud of her for being able to do that. So much to say and where to begin? She's all heart. There's no part of her that doesn't come straight from the heart because she's not capable of hiding anything.
[00:03:06] Anything she's thinking or feeling,
[00:03:08] Maya Winn: [singing] on this island seems so happy. On this island, everything is by design.
[00:03:16] Claude Winn: comes directly out of her. She is purity incarnate. She is a sweetheart. It's almost like a musical instrument in that she's more comfortable sometimes making sounds than actually making words. So you can tell what's going on with her based on the tone of her voice and the tone of the sounds that come out of her. And she is on the spectrum. Yeah. So that's just a preview on Maya.
[00:03:47] Carole Blueweiss: How was the relationship between Jake and Maya?
[00:03:51] Claude Winn: Jake is eight years younger than Maya. We had to kind of wait until we were getting a little sleep in our house. And he's grown up as the younger sibling of a very interesting older sibling, and it's really formed him.
[00:04:06] When he was born, it was just like this big present in our family. He's very, very self aware. Like he knows, he's aware of how he is appearing and what he's doing at every moment. Really, he's very contained to balance this older sister he has who is neither of those things. She's pure spontaneity and he's very thoughtful. He thinks about what he does.
[00:04:33] And like all 12-year-old boys right now, at least many, he's really into video games. He loves spending time in his room, chatting with his friends. The pandemic has not been a hardship for him because music and video games is all up his alley. He's content with that. Yeah. Between the two of them, the feeling is definitely an underlying love.
[00:05:01] Probably their age difference doesn't help because they don't have that much in common. A 20-year-old girl who kind of is still into cartoons and younger pursuits, and also older pursuits like going to cafes and hanging out with a girlfriend. That has very little overlap with what Jake enjoys, so they have not so much in common, and I think they also get on each other's nerves the way that probably typical siblings would get on each other's nerves, especially like these opposite kids. One is neat, one is messy, one is quieter, one is louder. They're really quite different. So one is very intellectual, one is pure emotion. That's a gulf. But they deeply care about each other. They do. I feel that.
[00:05:58] Carole Blueweiss: Tell me a little about Maya's development and how was she as a baby? And for parents and healthcare workers out there, what was her journey to where she is now at age 20?
[00:06:08] Claude Winn: So when she was born, there was just no sign that there was anything different about her. Also, she was my first child, and also I didn't have experience with babies at all. As an infant, she wasn't into gazing, you know, in my eyes. It wasn't until she was getting close to one that differences started to emerge. So I'd be with like a music group. We did this music class every week. As the other kids were becoming more clingy to their parents and really staying quite close, she was quite far.
[00:06:43] So we'd be going to a park after this music class and she would just bolt. And the other kids would like go away and come back and she wouldn't do that. And one of the moms said something to me, not in such a very nice way, and that was the first maybe clue that something was different. It was her second child, so she was, you know, very knowledgeable and she was able to tell me that she saw something there.
[00:07:09] She was biting instead of being able to say what she needed or when she wasn't happy. And then another, a doctor, said something to me like, well, what hurts? And I said, well, she can't tell me. And the doctor said she should be able to tell you or point. Maybe you should have her evaluated. But that was actually came at a very weird time because simultaneously my dad was diagnosed with cancer and he lived in Montreal.
[00:07:35] And my world became quite split between then Montreal and New Jersey, and so probably that delving deeply into what was going on with Maya was delayed by my concern for my father, and like I wasn't just concerned, I was important to his care because, you know, that was the way our family worked was, you know, the daughters were expected and wanted to, you know, be at appointments and be in the hospital and even sleep in the hospital. And it was pretty stressful because I had to look after Maya and my father at the same time.
[00:08:13] But she was getting more in her own world, I would say, around this time. And we were having no gestures, no eye contact. When she was one, up to two and even later, we would find her standing very close to a speaker, like while classical music was playing and go into a kind of almost a trance or walk in circles, and she was really taking the music in at such a deep level. You could just see.
[00:08:42] And songs that, you know, don't have words, she just really could differentiate. And later we found out that yeah, there is something with music with her that she just feels very connected with music. So that made sense. It probably made more sense to her than the environment around her, us and the things we said.
[00:09:00] Must have intuited, you know, her love of music because we did this program called Music Together every year, and she did it until she was quite old. I bought a lot of music, special classical music that was like music or listening music for concentration. We had this whole volume of music that she memorized, so there was a lot of exposure to music. And then when she was about two years old, we did with her a method, a therapeutic method that we found in Montreal called the Tomatis Listening Program. And they would put headphones on her and put her in swings and hammocks and wrap her in blankets, and they would play distorted classical music and words and have her speak into a microphone.
[00:09:47] The idea was that if she could hear her own voice and differentiate these different tones, that it would at minimum reduce her auditory sensitivity because she was so sensitive to sound. It was hard to take her places, even become more able to have self speech where she would hear her own thoughts. I don't think we got to that level, to be honest, but we did get to the level where she could go to the local cafe and be around those espresso machines.
[00:10:19] Which was a big deal to me because I was a new mom and I needed to take her out and just be in public sometimes, just not always in our house. And a lot of these, you know, cafes have those loud sounds. So suddenly we could do that after we did Tomatis. And we did that from the age of two till six, you know, once or twice a year.
[00:10:38] Maya was born at a time when a lot of the new therapies, a lot of the awareness that has happened since she was born wasn't all available. I would say she's one of those forefront kids to sort of the new kind of access to lots of therapy and lots of awareness. She was at the vanguard of that. At least she wasn't before it existed, but she was when it was just beginning.
[00:11:07] So many of the things we were the first. Like right now she's in a choir class at her school and the old choir teacher wouldn't let Maya be in choir. So we had two years of her not being in choir because they were afraid that she would do something to like, make them not award-winning choir ensemble.
[00:11:31] And then finally we had to fight for her. We did fight for her. We went to what is it called when you fight with your school? Due process. And we got in front of a judge and they said there's no reason this girl shouldn't be in choir. So she got into choir. And now, right now, this year, five people in her class and her class is only seven people, are in choir, and there used to be zero.
[00:11:59] So Maya has, you know, sort of greased the wheels for some friends and she's done that in a few different areas. And other kids before her did that. But not as much in terms of integration. That's kind of a new thing.
[00:12:15] Carole Blueweiss: Her tone and her pitch are quite good. Is the choir teacher surprised that these kids are quite talented?
[00:12:23] Claude Winn: I think that the old choir teacher that didn't want Maya in the choir, I don't think she cared if Maya was good at singing or not. The level was set so high by that teacher, and so just so uniform that there's no way Maya could have satisfied her desire. And the new teacher who replaced the old teacher doesn't even, I don't even think, asks himself that question because it's irrelevant.
[00:12:51] It's like, is he giving kids a musical education? Do they wanna be there? Are they enthusiastic? Are they learning to appreciate and love music? Yeah. And that's all that really matters.
[00:13:06] Carole Blueweiss: Tell me about the school that she's at. Is it a special school or is it a...is she integrated in a public school system?
[00:13:12] Claude Winn: She is in a self-contained classroom in a program within a typical, very large high school. So I thought when she did, when she moved to the high school, there would be like increased opportunities for integration. Actually, it was the opposite because in the high school, kids are getting more serious about studies and the academics are getting harder. And even the extracurriculars are getting more intense. And there was a great effort, I think, to keep things separate. And there was no interest in keeping things integrated at all. Early on, we met with the principal of the school who did not see our point of view. We wanted him to open up a music after-school club because we couldn't get Maya into music.
[00:14:06] And he said there were just too many clubs and, you know, I'm sorry, like there's this club and that club. And so it's like she's in a separate program within a big building and I think that what's gonna have to happen is that, like with the music program, the old people who have this limited vision of what it means to be a student and to be a citizen in a school has to, they have to come with a different mentality and it'll just change organically because the younger people will have a wider perspective.
[00:14:43] I mean, I know I'm generalizing and I know that there are older people that have a more open mind and younger people that don't. But that's not been my experience. It's been my experience that like the newer people that enter into the school have a wider idea of what can be done in terms of integration.
[00:15:02] While this was all happening with choir and she couldn't get in, we had a teacher suggest that Maya should do cheerleading. And that was so outside of my purview. I thought, I came from a very small private girl school in Montreal. We did not have a cheerleading team. I had actually never even seen a cheerleader in person, so that was like, huh, Maya a cheerleader.
[00:15:33] But actually it was like the perfect thing for her because she loves clapping and cheering. I mean, she lights up whenever. She claps for herself, you know, when she does something well. Even though the moves were a little difficult for her to like get down quickly, it became an opportunity for some of the other cheerleaders to mentor her and coach her up. And it was great. Pompoms and cheering and Friday night games. And it brought her into the fold of the school in a way that she hadn't been before, which was great. And that was because the coach was so young and so open to whatever. And so, like, not high stakes about her, how she looked as a coach, and just more about inclusion. Yeah.
[00:16:24] Carole Blueweiss: What are some times you had to advocate for Maya and when did it work and when did it not work?
[00:16:29] Claude Winn: Well, when did we not have to advocate for Maya? I mean, for real. Like I didn't know that. So Maya was born and I was 28. Starting from the age of 30 to whatever I am now, I would say I've had to become this big advocate person and I hate conflict. I hate conflict. So it's just, you know, it's getting easier because I'm seeing it less as conflict and the resistance is less intense. But it was really intense at the beginning and, it would cause even my husband and I to have conflict because he saw so clearly what was happening and how wrong it was. And he wasn't afraid to just say it like it was. And I was trying to like stay friends with these people and friendly and ugh, we would like, we would be sleepless and fighting about how to fight.
[00:17:28] The first thing we fought about was when we got Maya into the school system, and I'm really glad that, as I say this, this will not be the experience of new parents. The method used was really strict ABA which was just super backward. Like later we discovered verbal behavior ABA, which is wonderful, but that is not what was being offered at the time.
[00:17:53] It had nothing to do with what was organic or natural or even developmentally appropriate for a child. It was like some set binder with these little graphs, little check marks of did the kid point 10 times in a row and did the kid say yes 10 times in a row? As a result of that method, Maya learned to say yes when she meant no.
[00:18:19] She said yes after every sentence for the next seven years, eight years. She would say yes for everything. And she still says yes before she says no often. So we would fight to try to get them to use more developmental approaches in school. And we discovered early on this method called Floor Time. It's really similar to the Anat Baniel Method that you use in that it's developmental and the goal is to stay with the person and work with where they are.
[00:18:50] Rather than leading them to the final output of saying yes or pointing or whatever, it's like we want the child to think for herself and move and do things to get her needs met and her ideas across. So we would fight for her, for them to put that into the school and they did put it in, but they put it in in a lackluster way.
[00:19:12] So wasn't, it's a big deal to train people to use these methods, but that was our first advocacy. And then, I mean, there were many times, I probably can't remember them all, but getting her into the art class. They didn't think Maya could join an art class in fifth grade. And we thought, why? You know, like she can glue pieces of paper to another piece of paper. She could do this. And she ended up making beautiful artwork and being in the art show that year, and we were so proud of what she did. But it was a fight and a fight throughout. You're fighting with the administration and the administration above that. And it was so confusing to me.
[00:19:54] I didn't understand the whole political system happening within the schools that I was up against. But luckily, I think my husband did to some degree, but he was a little bit more willing to be confrontational.
[00:20:08] Carole Blueweiss: She's 20 now. Is she still in high school?
[00:20:11] Claude Winn: She's in her last year of high school because she's allowed to stay in high school until she's 21, because she has an IEP, an individual educational plan, and that gives her education right up to 21, which is great.
[00:20:26] Carole Blueweiss: Many have kids who are younger and wonder what's going to happen in the future. Maya went through puberty. Can you tell me a little bit about what it was like for you and for her?
[00:20:37] Claude Winn: Yeah, it's definitely a thing going through puberty, like for whether you're typically developing or not typically developing. It's a big deal. I think for Maya there were good things about puberty. The good things were better than the bad things. Like she started to sleep more, even if it wasn't through the night, she slept more because she was more tired and that was incredible because before that, you know, I never sort of got more than, I don't know, four hours in a row of sleep.
[00:21:08] And I was tired. I was really tired for a lot of years. So sleep improved. What didn't improve was she would, she became more like intense, you know, about things. And then we went through a journey where she went on hormonal birth control pills for hormones to help her with her cramps and supposedly help her with her skin.
[00:21:33] And it was like a disaster for us. And for her. It made her very moody, very emotional. It intensified everything for her. And I didn't listen to myself. Like within two weeks, I wanted her off these pills, but I didn't take her off them for probably a year. She was 13 and 14. She was complaining about cramps a lot, and I was concerned that it was too much pain and I wondered if there was anything that could be done other than giving her like a regular pain medication.
[00:22:09] And our doctor, who we loved, suggested the birth control pill and I was concerned. But he said, oh, it's good. And there's a lot of benefits, and benefits outweigh the problems, and it'll be good for everything. It'll regulate her mood. It will clear up her skin, da, da, da. Honestly, none of that happened.
[00:22:34] And then I was concerned and I took her to a second opinion and I went to a female doctor. I said, I don't think this is working. She seems more moody. That doctor said, she'll be worse if you take her off. So, we suffered through a whole year of her being just really not herself and aggressive.
[00:22:56] And really just intense in her emotions. And finally at school, she had like a really bad day at school. I talked to the school nurse and the nurse said, is she on any medication? And I said, she's on the birth control pill to help her with her cramps and this nurse said, please take her off that. My daughter was on the pill and it made her just, it like ruined her life.
[00:23:26] It was terrible for her, and I felt so validated. I started crying because I knew that she should go off it. I still was like, I still was hesitant because doctors were saying, oh, she should stay on it. And I even, I went to my hairdresser and like, there's nobody who listens better. Or is more like practical and kind than a hairdresser.
[00:23:50] And the hairdresser is like, you should do it. You know, of course you should take her off. And of course I took her off that second. You know, we never looked back. Like, she still gets moody and upset monthly, but it's not all the time. Like it was all the time. And it was, it's so much better. Night and day, like her world improved.
[00:24:13] Carole Blueweiss: What about the cramps? How do you deal with that?
[00:24:16] Claude Winn: She takes the Advil. There's worse things than cramps. You know, not listening to yourself is the worst thing you could do as a parent.
[00:24:25] Carole Blueweiss: Tell me more about that.
[00:24:27] Claude Winn: As a parent with a newly diagnosed child, and in Maya's case in particular with her autism diagnosis, there was this emergency sense of like rush that we were told that she needs to learn before she hits a certain milestone and she needs to be cured before that window of time closes or she needs to be treated.
[00:24:53] And maybe if we gave her, you know, a diet without gluten and casein, she would be cured. And maybe if we gave her like injections of this or that, or tried chelation. There was a lot of pseudo medicine that was being encouraged at that time. And if you were a responsible parent, at least it felt like if you were a responsible parent, you had to try all of these different approaches that I literally hadn't even heard of at all in any way until that moment where I had, you know, this child that I was supposed to help and deal with the sort of the grieving while being confronted with too many pseudoscientific practices.
[00:25:45] And of course any doctor like would charge you $800 to get the first evaluation before they would even do anything to help your child. So there was a lot of $800, $1,200 just for nothing. And I think at a certain point as a parent, when you're being asked to do things that seem terrible, you need to listen to that and not do them. Because things that are gonna help your child shouldn't make you feel terrible. This is an exaggeration because I was not suicidal, but I had this thing I would say, anything that makes me feel like killing myself, I will stop doing. And that's a lesson I have carried forward from the beginning till now.
[00:26:29] Like at one point, Maya's schedule was so ridiculous. She had, I can't even remember because I wasn't sleeping at that time. And it was too many things. It was like speech therapy, hippotherapy, occupational therapy, like music therapy, preschool. I literally can't, I can't remember. Probably ABA. This is a child that like couldn't look at you and we were putting her through all of this and putting ourselves through all of it, and it was expensive.
[00:27:01] And we were also driving out of state just, oh yeah, the listening therapy. And so it was just like, take away everything and then one by one put back in the things that felt good and seemed to be helping. And even if things were helpful, if it's overwhelming, then it's not helpful. When Maya was five, we found with the help of our local Chabad a Jewish camp in Georgia that is called Ramah Darom.
[00:27:33] It's not an autism camp. It's a typical camp for conservative Jewish kids. I'm not religious, so it was again, really kind of outside of my, what I would've found on my own. But, you know, it was meant to be. They started a program for families with a child on the autism spectrum. And they were subsidizing it.
[00:27:58] And I just, I was like, I guess we have to do this. And we agreed to, you know, we said, okay, we're gonna do this. And we flew to Georgia and we went to this camp and it was just all these wonderful people who really wanted us to be there. And she was really young. She was only five. The feeling of being in a place where people wanted your child and you to be was just too, it was just too much. It was too good. [campers singing]
[00:28:35] Carole Blueweiss: What advice do you have for parents out there who are just starting this journey?
[00:28:40] Claude Winn: Mm. First of all, my heart goes out to you because I know we all take in this information differently and some of us are super zen about it, but, you know, there is a mourning moment where you have to say, wow, everything that I didn't even realize I wanted for this child is maybe not gonna happen.
[00:29:02] It might, it might not. And you have to grieve that. And I think give yourself the time to feel all that and then take your time. There are experts, but they're not you. And they don't know your child as well as you do, and they have, some of them have motives, you know, they have to make a living. And they're not always thinking about, well, how does this fit in with your schedule? And is this really a good idea for your child? You're the one that knows that.
[00:29:30] If you can find a good counselor or a good therapist, someone you trust, will make your life feel better. Like when they come into your home or you go into their office, things feel better, not more overwhelming, not more stressful. There will be those people, those therapists that maybe are giving you a good push and it might not feel always comfortable, but it shouldn't feel overwhelming. Like we went to somebody for years that we would pay a thousand dollars a pop and we would drive four hours to get there. And every time I came, I was like, why did I do that?
[00:30:07] I can't even follow her recommendations. They're too difficult. But I would do it because I thought I was being irresponsible to not do it. And she said really nice things about Maya, but she didn't make me, make my life better or make me feel better. It just cost us more money than we had to spend, and I would recommend not doing that
[00:30:30] Stick to the people that actually make your life feel better. I mean, probably some of you will already do that anyway, and but some people like who are insecure like me and don't know, you know, who to trust, might try like a variety of things. Listen to yourself. If it doesn't feel right, it's not right.
[00:30:49] Carole Blueweiss: What have you found for Maya? You talked a little bit about this, but if you were to sum it up, the things you've come up with, what really helped?
[00:30:58] Claude Winn: The first thing that really helped was floor time, because that's the first thing that enabled her to look at us in the eye. And same with OT at that time, and like respond from herself. You know, like actually respond, not with crying or just giggling, but actually responding. And I think the listening therapy helped because it desensitized her ears. I think that the camp was brilliant. The community feeling was wonderful, and it wasn't perfect because, you know, it was hard for us to be anywhere at that time, but it was really nourishing overall and then continues to feed Maya.
[00:31:40] So, I will fast forward and say, so that camp then became her first overnight camp experience, which is so good for Maya to have this sort of independent experience. And now it's her vocational training ground. So they offer a vocational program at their camp. And so, you know, a place where you can be and where your child can be welcome and get the training they need is ideal. And we were really lucky that we found that. And verbal behavior was super helpful.
[00:32:14] And then finding things she loved. Like someone at her, at that camp, again, the camp said, Maya should do dance. She's really like into dancing. I don't wait when people give me good advice and I immediately went and found a dance school. And they were like, sure, bring her. And so Maya did dance at that dance school from the age of nine until the pandemic hit.
[00:32:39] It's not actually easy for her to dance. She just loves it. It was wonderful for her. You know, it was wonderful to have a place where she could in an integrated way, put on costumes and dance in recitals and have an audience and something to look forward to, and to work toward a project, which was the recital.
[00:32:58] Socially, it wasn't as easy because these are prepubescent and pubescent girls, and they're not always the nicest, you know, they're not always the most inclusive. Maya, I don't think even gets at that level if she's being rejected. She doesn't necessarily have big stories about what's happening there, but, you know, I'm sure she didn't have that big warm hug that she got at camp.
[00:33:22] It still was overall a very valuable experience. And she was, you know, she was accepted. I just think she wasn't like treasured, you know, those are different categories. But she's treasured in a lot of places. She's treasured. You're not always treasured everywhere.
[00:33:40] Carole Blueweiss: That's true for everybody, right?
[00:33:43] Claude Winn: Totally, totally.
[00:33:44] Maya Winn: [singing] Everybody on this island seems so happy on this island.
[00:33:49] Claude Winn: Covid has had some real blessings for me and Maya in the sense that we've had a lot of time together, more than we've had in years. I always looked to outside stimulation for Maya and maybe underrated how much I could influence Maya myself. I would say in the last 10 years, actually forgot to mention that we had au pairs for years. That's a very big thing. I've outsourced a lot of the teaching and now all of a sudden it was like all on me and I was really freaked out, like, how am I gonna do this? And it ended up being quite great. I got to see what she knows because I was part of her school program. I got to see what she doesn't know. I got to see how to teach her and I got to hit against some walls that where I was limited and how I knew how to teach her.
[00:34:44] And just around this moment when things got really kinda, wow, I don't know how to not be frustrated when I'm trying to teach Maya. All of a sudden, our mutual friend Susan said, you know, how would you like to work with Carole? She's doing the Anat Baniel Method and she thinks it could be really helpful to you and Maya, and it's similar to floor time in some ways.
[00:35:09] And I was like, are you kidding me? Yeah! You know, you're always like looking for somebody to coach and support you when you're on this journey that you know genuinely is there to help. So it was like an answer to a prayer, to be honest, that I had really given my heart to working with Maya and I really did reach kind of a limitation and I couldn't see what it was.
[00:35:36] And that's when you came in and you, actually we Zoomed. We Zoomed and you watched Maya and I interact. And you saw this moment happen pretty early on, I think, in the conversation where it became a moment where Maya had to make a choice and she couldn't, and you watched me flailing and quickly like avoiding the choice and making it for her and trying to like fix the whole situation before it got stressful or there was a meltdown and you're like, wait a minute. Slow down. It's fine. Let's just see what she does.
[00:36:18] And you've been coaching me not only to be patient with Maya, like let her have her experience of the frustration of the choice making and to encourage Maya, like now since we've been working with you, we're giving her choices right, left, and center. And I'll add choices, whereas I would bend over backwards to avoid a choice.
[00:36:40] Now I'm like, hmm, an opportunity to give the girl a choice. Do you want white cheese macaroni or the orange kind? And maybe you could even have a grilled cheese, and this would've just like, been way too much before, but we've been giving her the choices. And by the way, this wasn't even a new concept for me. I've been told to give her choices. Where's my phone? It's here, honey, it's off. Sorry about that. I guess she's on her break from her choir class. I've been told to give Maya choices for years. And we've done it and we've stopped doing it. And I think I just kind of untrained myself from trying to give her choices.
[00:37:22] Because I never really got good at giving her choices. It went from not giving her choices to like avoiding choices at all cost and making choices for her. And so this was revolutionary like, she's still struggling. You know, this morning she struggled, but it's more playful now and we don't get all worked up.
[00:37:40] She's taking cues from me like, I'm not worried so, and I know I'm not gonna make the choice for her. And so that's been huge because actually choices are part of your minute by minute life. We're making choices every minute. So if you can't make choices, you're frozen. You know, you're blocked. Life is really hard.
[00:38:00] So this is huge, you know, and it's just the beginning. And the other thing that I'm working on is just slowing it down a lot with Maya and figuring out that she learns much better when it's slow. And even though she can be fast, because she has this ability to be fast, it doesn't mean that she's fast. And it's better if I'm slow. And that's really huge. And slow down and don't bombard her with all my unfiltered thoughts. [sounds of play]
[00:38:32] Carole Blueweiss: Playdates with other parents and kids. What was that like?
[00:38:38] Claude Winn: It was definitely tough. When she was diagnosed, we lost a lot of the people that we would do playdates with. They weren't necessarily my friends, but their kids were Maya's age and it just fizzled out. It was very hard to maintain that. And I would say after four and like five and one of our neighbors moved and they lost contact and probably lost even desire to play with Maya anymore. It was tough. There wasn't a lot of spontaneous play dates. I had to manufacture those because I was told to get her, you know, get her some friends. So I did and the school did help with that somewhat. Putting at least one kid that we could call to invite. And Maya was invited to some birthday parties. She did have some interactions, but there was no long-term friend that she had.
[00:39:36] I mean, when I look at people I know, I mean, this does make me a little sad. Like my sister or other people, they have family friends they hang out with or they go on vacation with. We don't really have that. I am very lucky that when I moved to New Jersey, I met my spiritual mentor teacher. I don't even have a word for her.
[00:39:58] She's so pervasive in my life, like spiritual mother. And she has, you know, helped to keep me toned. I'm not always in physically great shape. I usually am, but you know, it's the inside of me is always in good shape. Like I'm always working out my inside trying to make the space bigger, to hold pain and the loss and dealing with the unknown. That's my priority.
[00:40:27] Carole Blueweiss: And what do you do to take care of yourself?
[00:40:30] Claude Winn: I think I'm pretty weird. I meditate and chant almost every day. And I paint, I read poetry. I take care of my body. Maya and I do The Class. It's Taryn Toomey's The Class. It's like jumping up and down and music and doing sort of yoga, but kind of aerobics and I can't explain it, but it's addictive.
[00:40:58] And then we do yoga with our friend Abba every other day on Zoom. And painting. Just discovering that, how much I love to paint has been real food for me. Keeping those relationships going, those friendships that feed you, that's what I do. Trust yourself, feed yourself, take care of yourself. That's the center of the spoke of the wheel, where the spokes come out. There's so many other people that have to be taken care of, but you can't do it if you don't take care of yourself.
[00:41:32] Carole Blueweiss: Thank you Claude, so much for taking the time to be with us and sharing all your amazing insights and valuable advice.
[00:41:40] Claude Winn: Thank you, Carole, for being a big part of my pandemic learning project and helping me so much with Maya. I really am grateful.
[00:41:49] Maya Winn: [singing] Every turn I take, every trail I track, every path I make, every road leads back to the place I know or I cannot go where I long to be. See the line where the sky meets to sea, it calls me and no one knows knows how far it goes. If the wind in my sail on the sea stays behind me, one day I'll know. If I go, there's just no telling how far I'll go. I know everybody on this island seems so happy on this island. Everything is by design. I know everybody on this island has a role on this island, so maybe I can roll with mine. I can lead with pride, I can make us strong, I'll be satisfied if I play all along, but the voice inside sings a different song. What is wrong with me? See the light as it shines on the sea. It's blinding. But no one knows how deep it goes, and it seems like it's calling out to me, so come find me and let me know what's beyond that line? Will I cross that line? The line where the sky meets the sea. It calls me and no one knows how far it goes, and it seems like it's calling out to me, so come find me. One day I'll know how far I'll go.