Ariana Speyer is an experienced editor, writer, and copywriter turned Anat Baniel Method NeuroMovement® (ABMN®) practitioner. She lives in New York City with her husband Pat and their nine-year-old daughter, Calliope. In this episode, Ariana shares about life with Calliope, who has a rare genetic syndrome called Sturge Weber Syndrome, and how ABMN® has made a difference in their health and well-being. Ariana underscores that people are more multidimensional than their diagnosis, and reminds us how isolating it can be to live outside of society’s so-called norms. When you break it all down, we’re all seeking to belong and to be part of a welcoming community. Learn more about Ariana and her work at arianaspeyer.com.
You are welcome to share the wisdom from this episode. Please be sure to credit: “_Ep. 10, Ariana Speyer, Courtesy of Wisdom Shared Podcast with Carole Blueweiss._”
In my conversation with Ariana, we covered a lot of ground. Here are some of the highlights.
TERMS, TREATMENT MODALITIES, and RESOURCES in this EPISODE
ARIANA SPEYER
https://www.arianaspeyer.com
ANAT BANIEL AND NEUROMOVEMENT®
https://www.anatbanielmethod.com
EQUINE THERAPY
https://www.goodtherapy.org/learn-about-therapy/types/equine-assisted-therapy
FRUIT-EZE
https://www.fruiteze.com
MUSIC THERAPY
https://www.musictherapy.org
SUZANNE MORRIS, Speech Therapist, Virginia
https://www.new-vis.com
STURGE-WEBER SYNDROME
https://rarediseases.info.nih.gov/diseases/7706/sturge-weber-syndrome
THE WORLD’S BIGGEST PIANO MAT by SMART PLANET
Search for this product online and purchase from your preferred retailer.
[00:00:00] Ariana Speyer: There are so many medical interventions so early. You start believing in the medicalization of your child as a list of symptoms or diagnoses, and I think it's really important to hold on to who she is outside of the descriptions and the labels that get put on her.
[00:00:27] Carole Blueweiss: Welcome to Wisdom Shared, where parents are the experts and connections inspire change. I'm Carole Blueweiss. And on this 10th episode, I have the honor to interview Ariana Speyer, an experienced editor, writer, and copywriter turned Anat Baniel Method NeuroMovement practitioner. We met each other in the ABM training where she was one of many parents of special needs children. I was one of the handful of medical professionals.
[00:00:55] The parents were there to learn a method that helped their own children or grandchildren in ways other interventions couldn't. Ariana saw firsthand how NeuroMovement had helped her now nine-year-old daughter Calliope develop into the beautiful child she is today despite her many challenges. Ariana felt so inspired by NeuroMovement and its potential to change lives that she decided to study over a three-year period with Anat Baniel.
[00:01:25] She's a gifted practitioner in the New York City area working with children and adults. Ariana lives with her husband Pat, a New York City civil servant and musician, and their daughter, Calliope. They chose the name Calliope for how it resonated with both of them. Ariana and Pat are fans of poetry, and Pat plays the organ. Calliope was known as the Greek muse of epic poetry, and a calliope is the name of the organ that we hear when riding on a carousel.
[00:01:56] In this episode, Ariana delves into the idea that people - especially kids with challenges - tend to get assigned all sorts of labels and how important it is to realize that beyond the label, there lies a person, a human being, one's child, one's daughter, one's neighbor, one's son, one's student, one's patient, and that individual is way more than his or her or their diagnosis.
[00:02:24] Listening to Ariana, I could not help but reflect on the question who am I? Who are we? Don't we all wanna be understood and seen for who we are as human beings? Ariana reminds us how lonely and isolating it can be to live outside of society's so-called norms. But when you break it all down, all of us are seeking to belong and to be part of a welcoming community.
[00:02:53] Ariana tells us about her life with Calliope, which in so many ways is a reflection of all of us. I interviewed Ariana in February when quarantine was still in place. We spoke about the uncertainty of Covid, layered upon unending uncertainty that parents of children with special needs deal with on a daily basis, with or without Covid.
[00:03:15] I asked Ariana how she was managing and her response was not what I expected. She chose to speak about how Covid brought out to others who do not have children with special needs a looking glass of sorts into the challenges families with special needs face every day. We dove right into our conversation. Let's listen to what Ariana has to say.
[00:03:40] Ariana Speyer: As parents of a special needs child who's also medically fragile, we experience uncertainty, a lot of uncertainty all the time, and the pandemic has increased that uncertainty. But at the same time, the pandemic is creating a lot of uncertainty for everyone all the time.
[00:03:58] So it's been interesting to kind of have that intersection of like what we came into it with, how our lives are, with this global event that I feel like in a sense has given other people a little bit of a taste of what we live with all the time. In a way, I feel like we came into the pandemic kind of more prepared than other people because we are already very hygiene-sensitive and kind of risk averse and used to staying home
[00:04:30] So we had a lot of things already in place that I think, you know, may have served us. We didn't have as much adjusting to do probably as most people did. And we were also very used to calculating risk and like a risk-benefit analysis is something we've been very used to doing since my daughter was very little.
[00:04:52] And I think that's something people are grappling with. A lot of, you know, is this worth it? Does this make sense? Is the benefit worth the risk? You know, all of those questions we have to ask ourselves now all the time. We were already pretty used to asking ourselves like, is it worth it to have an MRI if there is general anesthesia involved? You know, what will we get out of it as far as the results and how will that change our behavior moving forward? What are the risks we're willing to take putting her on the bus, you know, all those things that we had to grapple with as she got older before Covid.
[00:05:27] Decisions like that. Not only medical, but of every kind. It's just kind of a place that we live in. So yeah, so we're just layering more uncertainty over kind of a baseline level of uncertainty that we always live with. It's been incredibly difficult. I mean, I think it's exposed on a societal level how interdependent we all are and also how unequal our healthcare system is. And all the inequities across the board have really been magnified by the pandemic, and I think we've noticed that as well. You know, when you don't take care of your most vulnerable citizens under regular circumstances, then in a pandemic that's gonna be highlighted and will become even more dangerous.
[00:06:15] Carole Blueweiss: Really interesting to hear everything you just said. Did you mean this? And if you didn't, tell me, that maybe people are gonna be, after all this, have a little bit more empathy for parents or families that have to go through this all the time. Do you feel like there's a little door to understanding what your life is like on a normal basis?
[00:06:34] Ariana Speyer: Yeah, I mean, I think it has the capacity to do that. I mean, I think we've all had to hopefully kind of give each other more grace because we're all kind of struggling through the same thing at the same time. Whether or not it'll bring more awareness to families like mine, I don't know, but I certainly hope that could be a byproduct of it. That would be great.
[00:06:58] Carole Blueweiss: Tell me about Calliope's school. How did you come to the decision that it was a good place for her to go and to be safe and to learn?
[00:07:07] Ariana Speyer: It's an interesting landscape, New York City. It's very complicated as far as how the special education works. The bottom line is there aren't very many choices for a kid like Calliope that we thought would be appropriate for her.
[00:07:21] And we decided to choose a choice that was very, very small so she would get a lot of individualized attention and a lot of support. And that was, I guess, one of the deciding factors. Also, listening and hearing from other parents who had kids at the school and what their experience was like and feeling some sense that the directors of the school had a good handle on the best way to help these kids learn and the best environment in which to make that happen.
[00:07:54] Carole Blueweiss: How many children are in her class? How does that work?
[00:07:59] Ariana Speyer: Six are in her class and six kids in the older class, so 12 kids in the school all together.
[00:08:04] Carole Blueweiss: 12 kids in this school. And I assume that's not a public school.
[00:08:08] Ariana Speyer: It's not a public school.
[00:08:10] Carole Blueweiss: Tell me some things you and Calliope and your family do for fun.
[00:08:14] Ariana Speyer: I mean, she loves to play music, so that's something that we can do. And also dance. So listening to music, playing music, I'd say music plays a big part in her life. Her dad is a musician. He is a guitar player. He's an organ player. He's a singer. He doesn't do that professionally anymore.
[00:08:34] [music sounds] Guys, you're playing the piano with your feet.
[00:08:39] Patrick Sullivan: You're playing foot piano. This might be foot violin. Foot fiddle. [child and adults laughing]
[00:08:49] Okay, let's do some left, that's your right side. That's your left foot. Your left foot has two notes. [piano sounds and laughter]
[00:09:09] Good stuff. [piano and play sounds continue]
[00:09:22] Whoa. You're sliding it all over the place, too. You're like Jerry Lee Lewis. You're playing with your feet.
[00:09:31] Ariana Speyer: We've been listening to a lot of Elvis Presley lately and 50s rock, and then she loves like moving around and dancing and listening to music. Dance parties and anything really involving music is something that we love to do together as a family.
[00:09:47] Carole Blueweiss: How would you describe Calliope?
[00:09:50] Ariana Speyer: I mean, I think this is like where it gets tricky for parents of kids like Calliope because, you know, there's labels that people understand that make it very simple and kind of quick to describe. And then there's her humanity and who she is as a person, which may or may not be visible to you if you were just to see her, you know, or meet her briefly.
[00:10:16] So I think there's kind of like a tension between how she's labeled and who she is. So I don't really have a good answer for that. I haven't really figured out how to talk about her, to introduce her to somebody. If I were to talk about her as a human, as somebody that I love, I would say she's silly. She loves to dance. She is nine years old. She enjoys all kinds of music and hanging out with her grandparents and watching movies and, you know, a lot of things that nine-year-olds love doing.
[00:10:59] If I was gonna talk about her labels, I would say that she's non-ambulatory, nonverbal, and she has multiple disabilities. So I don't know how to kind of marry those things. And I'm not sure if they should be married.
[00:11:15] Carole Blueweiss: I love your answer because it's almost like saying, well, who are you or who is your child? I mean, there's so many ways you can describe that, right? Superficially or deeper, from a mother's point of view or from a father's point of view. So I loved how you answered that. It actually brings tears to my eyes because it's such an insightful awareness to be able to even say that it's not an easy answer.
[00:11:37] Ariana Speyer: Yeah. I mean, I think, you know, for kids like Calliope, there are so many medical interventions so early and they, you know, you can kind of start believing in the kind of medicalization of your child as a list of symptoms or diagnoses, and I think it's really important to hold on to who she is outside of the descriptions and the labels that get put on her.
[00:12:10] Carole Blueweiss: And did you find that at some point that was actually something you actually consciously thought about or that actually bothered you, these labels? I wonder from your point of view, obviously you need labels for diagnosis and for insurance and for schooling and things like that. That's the obvious. But then you have the labels for society. I just wonder how you either compartmentalize that or you don't or what are your thoughts about labels?
[00:12:39] Ariana Speyer: I go back to remembering when she was pretty little, I don't know, maybe around one or younger. And, you know, you have, especially when she was very little, we had a lot of tough medical appointments and crises, and I remember hearing from a friend who had some experience, just something along the lines of remember that she is not her diagnosis. You know, she is so much more than that.
[00:13:07] And when you're in the middle of a crisis or a series of those crises in a medical environment, that can be hard to hold onto. So that framing of it was really helpful to me because of course she has diagnoses and she has labels, but above everything else, she's a complete human and we have all of these interactions and knowledge about who she is as a human and holding onto that and fighting for that is super important.
[00:13:45] Carole Blueweiss: And how have you had to fight for that? I'm imagining in my head that doctors that are pediatricians, that they would have that intuition to think that way. But I wonder from your experience, has that been the case?
[00:13:58] Ariana Speyer: I mean, the first thing that comes to mind is like when you're at a teaching hospital and rounds are happening. At the beginning, it was like you talked to, it felt like five different people before rounds even started, and you had to repeat your whole, starting with your birth history to, you know, wherever you were in your life for the benefit of students, which obviously has its place.
[00:14:21] But it's not parent centric. It's doctor centric. It's how doctors learn. There's no benefit to parents to repeat, you know, for the benefit of doctors or somebody in training a whole medical history of your child. And going back to the birth history, there's just, there's...so after a while, it became clear that - this is just one example - we weren't gonna do that because it didn't serve us. So when the attending was ready to come around, we'd talk to that person. But until that point, we weren't going to waste our energy educating people. It wasn't our job to educate.
[00:15:01] That's the first example that comes to mind. Or kind of fighting for, you know, because also like the more you do that, the more, I think, dehumanized you become because you're just slapping labels on everything over and over and over again, you know, for the benefit of these medical professionals. When as a parent, you're there to care for your child as a human, not as a series of labels.
[00:15:24] Carole Blueweiss: Yeah. Yeah. And then how about when you left the acute hospital setting? Did things change in terms of your relationships with your medical team?
[00:15:35] Ariana Speyer: I mean, our medical team was always great. It's not that there were any issues. It's, I'm talking about it on a systemic level. It's nobody's fault that that is the system that we're in. It's just like we don't have to participate in that system in the way that we're expected to.
[00:15:50] There was another instance where, you know, we had a lot of services through early intervention, like many, many, many hours of therapy, which I think was highly beneficial for Calliope. We had wonderful, wonderful, wonderful therapists, but there was a point where we had a special educator who is still very dear to me.
[00:16:10] There was one session I remember where she wanted me to either answer or look at some kind of developmental chart or questionnaire. That was really, really painful because, you know, Calliope wasn't doing any of the things that were listed and I was just like, I'm not gonna do this. And it was painful and I was angry at the time because I felt like I was being kind of confronted with all of these expectations for my child that she wasn't meeting in a way I hadn't expected to have to confront like at that moment. But in retrospect, I'm glad I shut it down. It wasn't serving me, it wasn't serving Calliope. Maybe it was serving the system on some level with like some kind of paperwork that needed to be filed, or I don't even know what it was. But viscerally, on an emotional level, it was painful.
[00:17:01] So I was like, I can't do this. I'm not going to do this. But there's always, you know, this drive to quantify. And to receive benefits and services, there's a lot of quantifying that happens. All sorts of evaluations, you know, have to be done. And that's another way that you and your child are continually labeled.
[00:17:24] Carole Blueweiss: And did you ever have conversations with, let's say, that special educator, it sounds like you did have a very good relationship with all these people, and you're not judging them clearly, but they clearly could learn from you. You know, you are so articulate and insightful. So were you able to have her understand your point of view when that happened?
[00:17:43] Ariana Speyer: I mean, I think she knew where I was coming from. I'm sure I could have handled it better, you know, with more emotional maturity. But, you know, sometimes things just hit you viscerally and you respond viscerally. And I think she understood why I responded as I did, but I'm not sure if we ever talked about it. Because I don't know how conscious I was at the time of, you know, all the factors going into why that felt the way that it did.
[00:18:08] Carole Blueweiss: If you were to give advice or talk to doctors out there, healthcare workers, anybody that you've come in contact with and you wish that they, acknowledging obviously that they're amazing people, but, you know, we all have things to learn. What would, what kind of advice would you give them just to give them some insight into your point of view? What you wish that maybe they could add to their presence or their questioning or something? What, I don't know. Like what would you like them to know?
[00:18:34] Ariana Speyer: I mean, I think so much of it comes down, really, to bedside manner which I don't think doctors are necessarily trained in. And bedside manner is like almost, it's so much to a parent. It's really a lot and, you know, you can kind of tolerate doctors who you feel like are the best at what they do. If, and at the same time tolerate, you know, a suboptimal bedside manner. You can make that kind of decision. But ideally, a doctor will come with a certain amount of positivity and I'd say kind of connectedness that makes you feel safe and like you're working together collaboratively to figure out the next best thing.
[00:19:23] Carole Blueweiss: Hmm. And did you feel that that didn't necessarily happen a lot? That, the idea of feeling collaborating together?
[00:19:30] Ariana Speyer: At the beginning, certainly no. More and more as she gets older, yes.
[00:19:37] Carole Blueweiss: And what about the doctors? Like you speak about how they speak to you, but how are they? Is it the same thing with Calliope, how they are with her? Do you find that they're trying to connect with her and relate with her? What's been your experience in that sense?
[00:19:54] Ariana Speyer: I'd say, you know, if you're in pediatrics, you have pretty large interest in serving children. So I think they're trying, you know, the efficacy of their efforts varies.
[00:20:06] Carole Blueweiss: Do you think that's something that is because of the system or because of the individuals, or is that something, decreased awareness if they wanted to become better practitioners? As they, obviously everybody does, and especially with children. Do you have any advice for how they respond to Calliope or any child?
[00:20:22] Ariana Speyer: Just meet the kid where they are and try to connect, which, you know, is the basis of ABM.
[00:20:29] Carole Blueweiss: What drew you to ABM? And if you could just explain what it is briefly from your experience. You know, like it's a hard thing to explain, but just so people out there who don't know what it is, we'll put it in the show notes as well. Why did you go there?
[00:20:42] Ariana Speyer: Calliope had had a very serious medically compromising series of events related to her epilepsy in 2017. That was hard to build back from, and I was looking for ways to help her outside of the therapies that we already were using. And somebody randomly mentioned ABM in a group setting and I started looking into it and was intrigued.
[00:21:10] I had not heard of it up until that point. Never had come across it. And we took her for some lessons with a practitioner in New York, Marcy Lindheimer, and then a another practitioner, Sharon Oliensis. And from the very beginning, I just felt a visceral response to the approach, which is so gentle and so...it's so hard to describe. Giving Calliope movement experiences that she wouldn't have on her own in a way that would develop her own potential.
[00:21:42] And it seemed very natural to me. You know, what they were doing with her was not what I was seeing other therapists do, but it seemed incredibly, like it made so much sense from the very beginning on an intellectual level and on a feeling level.
[00:21:59] Carole Blueweiss: How old was she when you started?
[00:22:01] Ariana Speyer: She was five and I just kind of fell in love with it. It just seemed, it seemed so right on some very basic level. And then I read Anat's book, and that got me really, really excited and I hadn't been that excited about anything in a long time. So with the prompting of some very close, very good friends, I decided to jump into the training very quickly after being introduced to ABM.
[00:22:30] I think we started in like May of 2017 and I started the training that fall. So it was a very quick jump off a cliff, more or less .
[00:22:40] Carole Blueweiss: Yeah, wow. So you come from a publishing background, writing, and then now you're seeing your daughter work with her body and then you decide to actually learn a whole different way of potentially making a living and just using your time. How was that for you? The idea of you becoming, you learning more about something that was not very familiar to you?
[00:23:03] Ariana Speyer: It felt like a very powerful way to help Calliope and to also help myself. And like the right moment in my life and my career to make a change because my writing and editing life had been really limited by, you know, the care that Calliope requires, you know, after she was born.
[00:23:25] So it was as if, you know, something else got put in my lap that would not only be potentially really useful for Calliope, but also make a lot of sense for me for what I could do with the next stage of my life that would work with our family life.
[00:23:43] Carole Blueweiss: Are you using it now with Calliope or with other kids as well? What's been your experience? Now, I know you've graduated because we were in the same training and that's how we met. I'm just wondering now that it's been a long time, a lot of time invested and now I know with Covid, it's tough. Are you still on this track of wanting to continue?
[00:24:03] Ariana Speyer: Yeah, absolutely. I feel extremely dedicated to being an ABM practitioner because I've seen the changes for myself, for Calliope, for the adults and the children that I've been able to work with. So I know it's extremely powerful. With the pandemic, we have not really seen anyone, so you know, that's not something I've been doing in person, but I've been doing a lot of online movement lessons with adults and also coaching. I'm really looking forward to the time when I can go back to hands on work with adults and kids. Not sure when that will be, but really looking forward to when that happens.
[00:24:39] Carole Blueweiss: For the parents out there and even healthcare workers, and I know I'm a physical therapist, a lot of physical therapists are really curious about, or they just don't know what is ABM. Like how, I wonder from your experience with Calliope and you now being a practitioner, what makes this method so alluring and captivating and just so profound that you would spend so much of your time and money and energy into learning it and now changing careers and talking about it? What is it about this that you think is just so amazing?
[00:25:13] Ariana Speyer: I mean, I think the brain's capacity to change at any age is very alluring. You know, this idea that we can create new neural pathways that will create more mobility, you know, less pain, so many wonderful things. The brain is just this amazingly dynamic system and ABM has created, I mean, starting with Feldenkrais, but then evolved by Anat Baniel, this method that can tap into that and take advantage of that ability to change.
[00:25:47] I think that's one of the primary things that makes it really alluring is that this work is brain focused, you know, as opposed to more traditional therapies, which are, you know, we've benefited from them greatly, but they're more focused on muscles or functions or repetition or, you know, any number of things that you could probably describe better than I could.
[00:26:09] But having the work be focused on how to create the conditions that will drive positive change in the brain feels pretty unique and very powerful. So I'd say, yeah, that's one of the most alluring things about it. And then the kind of gentleness and focus on safety that practitioners enter into the work with, I think, is another. You know, there's no forcing. It's, like I said, it starts from a place of connection and meeting the person where they are as opposed to where you want them to be. I think is also is very profound and very powerful.
[00:26:50] One of one of the basic premises of ABM is this idea of connecting as opposed to fixing. And that's in Anat's book, Kids Beyond Limits, and it's just a very profound - what's the word I'm looking for - paradigm shift from, correct me if I'm wrong, but as a PT, you have very specific goals and you're supposed to get from this place of deficiency to reaching the goal. So that's, you're, you know, you're fixing.
[00:27:17] The idea of starting with connecting, and especially as a parent, I think that's, it's just such a useful framework because that is your natural inclination as a parent of a child with a lot of different needs, is to wanna fix, to have everything that everybody else has, you know, in some fundamental way.
[00:27:39] So the connecting is, it's just a whole different realm of thinking about treatment, which starts with a very simple but very deep connection between two people. And I think that's also very unique to this work and part of what makes it so powerful. I guess that's a good start, right?
[00:28:03] Carole Blueweiss: Absolutely. It's fantastic. And I know with ABM, they have this intensive scheduling. I wonder how important you felt that was, that change of the idea of, for Calliope anyway, to have that different amount of, let's say, movement time or learning time, or in the way that it was structured. How did that structure make a difference? Or did it, in your opinion, is that something that was clearly or not clearly different from what you found in the traditional system?
[00:28:32] Ariana Speyer: I mean, it's an interesting question. I, it's a little bit different for us because we had so many services, so many times a week. It was different in the sense that we were going, let's say, monthly as opposed to like three times a week. But it was always that way for us, so I didn't, I don't have a lot of comparison to make. I think what's interesting about the ABM idea of having an intensive is you're doing all this learning in an intensive model, say three or four days a week, a couple of lessons a day, which is a lot, and then you're taking a break in between the intensives and the break is a really interesting time to kind of see how the learning progresses. And what happens after this intensive time of lessons.
[00:29:18] And I think rest is also so essential to how ABM operates. In every movement lesson, there's so much resting, and that's a time when you can kind of notice differences. And noticing differences in our work is the fundamental unit of learning, of how we learn.
[00:29:35] So having this intensive time and then also having the resting in between to see what happens with how the system takes that information in, it's an interesting model. And I think it's been shown to work pretty powerfully. Does that answer your question?
[00:29:52] Carole Blueweiss: Yeah. And you brought something up. I wonder of what you think about...you used the word treatment. And I wonder if actually I caught you at something, because from what I understand and to help it maybe be clearer to people out there is that it's not in the medical model of trying to, like you said, fix anybody or one could say, maybe even treat them. I could be wrong.
[00:30:13] You can disagree with me, but it's all more, so much more about learning which you talked about, and that's the mantra, the brain and learning. And so that's why it's different. I'm not trying to compare it to physical therapy or something like that, but it just does strike me how many parents of children that have tried physical therapy have then switched over to this way, which has a whole different, like you said, paradigm. I just think that there's a lot that can be learned from it, you know, from, even in the medical model, but it is not a medical model.
[00:30:50] Ariana Speyer: Yeah. Yeah, I mean, it's, there's a whole vocabulary that goes along with ABM that you have to be introduced to. And I love it. It's, if you go to a practitioner, you're going to have a lesson, you know, which is so obviously so much about learning as opposed to a treatment. So for somebody who doesn't know anything about it, you know, I might say, as I did, that it's a treatment, but that's not, once you start getting familiar with the vocabulary, that's not how we talk about it. Yeah, and the people who come are not clients. They're students. So there's all of this language, which is of course very important that revolves around the idea that it's a learning process.
[00:31:33] Carole Blueweiss: And one other thing that you said that struck me. How important the pauses are, and it reminds me for some reason about music, like the pauses are there intentionally, right? And I'm not sure how that relates, but in a way it is somewhat of a dance and an awareness of rhythm and awareness that we're in a society of doing and fixing. And there is a tendency now for people even to read so many of the books that talk about slowing down and pausing and smelling the flowers and, you know, that now the research with neuroplasticity is showing that there's something to that, you know, that's actually something we need as human beings.
[00:32:15] Ariana Speyer: Yeah. I mean, I love that. I love, you know, there's a large part of the work is what we call movement lessons, which is not hands on. It's following verbal instructions, which might be to lift your head a certain way or move your, tilt your knees, and then you rest. And there's just something so beautiful about that, I think, is that resting is so much a part of the process.
[00:32:41] And like I said, it gives you the opportunity to feel what you're feeling, which is also primary in the work. You know, you have to pay attention to how you feel in your body as you do the movements. When you're doing the hands-on work, this connection underscores the feeling. So the practitioner is feeling and trained to feel how she or he feels in her own body, and then the connection with the student. And that should, and tell me if you see it another way, help the student amplify for the student what the student is feeling.
[00:33:15] Carole Blueweiss: Absolutely.
[00:33:16] Ariana Speyer: And that's essential. That's creating that kind of awareness is essential to the kinds of changes that we're looking for.
[00:33:23] Carole Blueweiss: And in the sense that for Calliope, that she's part of it. She's not getting something done to her. She's participating as well. She's feeling that from the person who's with her. And so she is given some responsibility here.
[00:33:37] Ariana Speyer: Yeah, absolutely. Yeah. I mean, it's, and like you said, it's a dance or it's a conversation. It's a, it's two systems, you know, the practitioner and the student dancing or talking to each other. And that's also what made the work really appealing to me was you're never going to do the same lesson twice with a person because that person's gonna come in and they're gonna have had whatever kind of day they've had. And they're gonna need something different on that day than they would have the day before or the day after.
[00:34:05] So a person's gonna come in with whatever they're feeling that day, whatever aches and pains or whatever it is that they have, and the practitioner has a responsibility to respond to that person on that day at that time. And that's going to be different than the next day or the day before. And that's part of the conversation or the dance that we're talking about.
[00:34:24] And that's a large part of what appealed to me about it is that you're not, it's not a rote system of movement. You might have ideas and hopefully you will have ideas, but it's a constant response to the system that you're working with that is the driver of what you do with that person and that system. And so it's actually really demanding work and it's also what makes it, I think, incredibly difficult to teach.
[00:34:51] Carole Blueweiss: And speaking of teaching, as a parent myself, I know that, you know, we all learn from our children. Can you describe some things that you've learned from Calliope?
[00:35:00] Ariana Speyer: One of the first things that comes to mind is just being in the moment, enjoying the joy of the moment. There's times that are hard and there's times that are really, really challenging, and so the joys become even more joyful and it becomes even more necessary to embrace them as they're happening. And that's like a practice that serves you well in all areas of your life when you have that mindfulness to be in the moment.
[00:35:27] I think it's a huge quality of life improvement to be able to do that. I think I've learned, I've learned about not judging people from her. Appearances are deceiving, to say the least. And actually taking the time to get to know somebody on a deeper level without judgment is so important. And that's not how I grew up or how I thought before Calliope came along.
[00:35:53] Carole Blueweiss: I know from experience as the practitioner side, a lot of parents, they want their child to be able to do this and that, and because that's what happens next in development. How have you managed your, I don't know what you would call these emotions, but obviously no one really knows what's gonna happen from one day to the next, but when you have a child with special needs, you really, there's no one you can really say, oh, that happened to that child, so this'll happen to my child.
[00:36:18] You really, I imagine, are in a lot of unknown territory. How do you manage that, that feeling of just not knowing about walking and sitting and even at one point rolling and talking or the things that happen to neurotypical children. How do you, how was that for you in terms of the process for you, coping?
[00:36:43] Ariana Speyer: I mean, I think when Calliope was much younger, it was much harder. Every birthday was incredibly painful and the uncertainty felt, I think, more overwhelming probably than it does now. So I think there's something to be said just for the passage of time and it not being so fresh. But I think, you know, conversely, there's always going to be grief.
[00:37:11] And how you handle that grief also changes over time. But I don't think it's ever gonna go away. I don't know how often I succeed at this, but the more you feel the grief, the less built up it gets and overwhelming it can feel. But it's not an easy emotion to face, obviously.
[00:37:31] Carole Blueweiss: And have you had anything that's helped you with that, like to help you through that?
[00:37:37] Ariana Speyer: For me, it's somewhat associated with trauma as well from various events and medical situations we've been in. So I, at a certain time, I felt like the trauma was actually really hampering my decision-making ability. So I did, I decided to do EMDR, which is a kind of therapy which I found extremely useful to help with the trauma.
[00:38:02] So I think you just have to look for what might be helpful and, you know, go with it. I think having a community of special needs parents is incredibly useful. Just to not feeling so alone and having a shared experience of what this life is like and what the grief is like also is really important.
[00:38:24] And, you know, the ABM training, as you know, was a high percentage of the people in the training were parents of kids with special needs. So that was a really big experience for me, just as far as the community, you know, that I gained and the support of that community, I think, is essential for mitigating or at least bonding over all of these challenges so that they feel less isolating and also less scary in a way.
[00:38:55] Carole Blueweiss: Sounds like, yeah, having that support. I guess we segued into this question I always ask is just because you're an experienced mom now, you know, advice to other parents. You've mentioned a few, the importance of other people, this technique of EMDR that, to help you with trauma. But is there anything you haven't said that you'd like to, just, if you were to meet a mom and just wish she knew some things that you already, you learned by experience. Anything you can think of that you would recommend or for them to think about?
[00:39:28] Ariana Speyer: It depends on your personality, but I think in a lot of situations it's easier, it's natural to curl into yourself in some ways and isolate yourself because you may feel so different as a parent from other parents. Even just going to the playground can be a huge deal. And that's probably my tendency more than anything else. I would encourage people who might have that tendency to not only try to find support, but also believe in the idea that people want to be helpful and may not always know how to be.
[00:39:58] Carole Blueweiss: I wonder about that, too. If somebody like me, I see you in the park with Calliope, and how do you wish people, I don't know if this is even a fair question or if you've had this experience? And you could say, no, it's not relevant. But do you wish that people out there with their neurotypical kids would have...what do you wish, how do you wish for them to be with you, other than obviously totally themselves, but do you, would you want them to come up and ask about Calliope or would you rather them...do you notice when they're nervous?
[00:40:27] I mean, what has been your experience with other parents and how have you dealt with that? Because I imagine it might be painful, I imagine it's something that parents of children with special needs deal with that parents of neurotypical kids don't.
[00:40:44] Ariana Speyer: Yeah, I mean, I think it's like most things about this kind of journey, it's more painful the earlier on it is, when you're still grappling with my child is different. How different are they? How will people notice? What will they say? You know, I don't necessarily have all of those questions all the time anymore.
[00:41:02] Carole Blueweiss: You've gone through that time. That sounds like it was a very difficult time. What do you wish you knew then that you know now?
[00:41:12] Ariana Speyer: I think just the idea that you're really not alone and there is a, like a huge, strong, loving community of parents you will be able to tap into that will be really important.
[00:41:26] Carole Blueweiss: And with your community, does it matter that it's, you know, the type of disability children have or what their limitations or abilities are in terms of your ability to feel support from them? Like, what's been your experience with other families in terms of the tendency? Is it the age or maybe that's not even important. Maybe it's their politics. You know, I don't know.
[00:41:50] Ariana Speyer: I think you know when you feel a connection with somebody that feels supportive and you know when you don't and just follow what you feel.
[00:41:58] Carole Blueweiss: Did you seek out support groups that were specific to the diagnosis that Calliope has, ever? Did you look for that?
[00:42:06] Ariana Speyer: I did look for that. I didn't find it. I'm not a big kind of internet sharer, and I did find, you know, there are great resources for her syndrome that I might be able to make more use of now, but at the beginning it seemed like kind of a lot of overwhelming information that might or might not apply to her that I decided I didn't wanna engage with.
[00:42:29] Carole Blueweiss: Yeah, that's interesting. Can you just for the audience tell us what is the syndrome that Calliope was diagnosed with?
[00:42:36] Ariana Speyer: It's called Sturge-Weber Syndrome. It's extremely rare, but it's kind of a random genetic mutation that creates vascular malformations and there's a very wide range of how complex or serious the syndrome can be. So somebody with a port-wine stain might or might not have Sturge-Weber Syndrome, but a port-wine stain a defining feature of the syndrome.
[00:43:01] Carole Blueweiss: Correct me if I'm wrong, it's just to have a, it's like a birthmark that's red.
[00:43:05] Ariana Speyer: Yeah. Yeah.
[00:43:07] Carole Blueweiss: Okay.
[00:43:09] Ariana Speyer: Yeah. But in people with Sturge-Weber Syndrome, it could be a very large birthmark covering a lot of the face or another part of the body, multiple parts of the body. And then going along with the vascular malformations, there can be brain involvement as far as where vascular malformations are. There's often glaucoma associated with the syndrome. Epilepsy. I guess those are the main features.
[00:43:33] Carole Blueweiss: What is your opinion, your personal opinion about labels? Do you have one that you prefer?
[00:43:40] Ariana Speyer: Coming from a background as a writer, language is especially important to me. So I was very loath to adopt the special needs label for myself as a parent and for Calliope as a child. For a few years, it felt like a kind of a weird imposition and a strange set of words that just felt really off to me.
[00:44:03] And then I just kind of surrendered to it and I was like, well, this is how people can understand her in the quickest way, I guess. So I'm kind of relieved that there's this conversation and some people are way ahead of it, further ahead of it than I am as far as what they're adopting to call themselves or their children.
[00:44:22] I still use special needs, but I'm very open to that evolving, and I love the idea of neurodiversity and I need to educate myself more about using the word disabled because I think it's obviously, there's disability studies and there's, you know, there's a lot of work that's gone into the idea that disabled is the right word, but I'm a little bit too ignorant right now to say for sure that that is a word that I would embrace. I may very well do that, but I'm not at a point where I know enough to say that I will.
[00:44:56] Carole Blueweiss: Besides the ABM, and you've done some hippotherapy, so I wonder if, are there other, if you wanna talk about that for just a little bit, just some other things that you found that were helpful or enjoyable to Calliope and to you that, you know, things outside the norm. Any alternative, I should say, or complementary activities?
[00:45:15] Ariana Speyer: I think music therapy has been great for her. Equine therapy, you know, being on a horse has been great for her. I think that's all the other, that they're not really alternative at this point, but not completely mainstream therapies that we've done.
[00:45:28] Carole Blueweiss: And any other, like in terms of diet or anything like that? Any other complementary or alternative practitioners that you've worked with?
[00:45:36] Ariana Speyer: Yeah. Suzanne Morris is a speech therapist in Virginia who is amazing. She's kind of a giant in her field, but she works in a very ABM-like way. I would just do a shout out to Fruit-eze, which is a natural combination of foods that we were able to get Calliope off MiraLax, and now she's on Fruit-eze and I think it's just incredible that this cheap, natural thing has been so helpful for her diet.
[00:46:06] Carole Blueweiss: What do you do for yourself to take care of yourself?
[00:46:09] Ariana Speyer: I mean, I have to say that doing ABM movement lessons has saved my sanity and my body during the pandemic. I've become very dependent on them in a way that I hadn't anticipated would be possible.
[00:46:22] They change your state in a way, and when you're living in a very small New York City apartment, not really leaving, having something like that was a huge tool for me over the course of the pandemic. And then going for walks has been another thing that I found incredibly therapeutic. Getting outside and moving, you know, I've never enjoyed it as much as I have, like lately. Even in the winter, it's been a gift. And then other than that, you know, like trashy TV and ice cream, beer.
[00:46:56] Carole Blueweiss: Awesome. I really appreciate you sharing so much intimate stuff with who you don't even know who your audience is, although you could be rest assured, I'll just say here that you know it was you and your fellow classmates in my program that inspired me to do this podcast to begin with because I just felt that there's just so much experience that you all have had that is very meaningful. If no one asks you about it, then it just never gets out there. And I think, well, for myself, when I hear other stories, it just makes me feel more human and more connected, even if I haven't had that experience.
[00:47:34] You know, I think something to do with stories, hearing stories, and when they're real-life stories, there's always something there that everybody can benefit from. I also find that as I'm talking to parents, that there's so much as me as a healthcare worker, we never have time to ask parents some of these questions, and I think it's really important that we do or that we somehow find out what is going on from your point of view.
[00:48:02] Ariana Speyer: Yeah, absolutely. I mean, which is why I think this podcast is so wonderful. I mean, it's because you're coming at it from this point of view of being a PT and also an ABM practitioner and also a parent, you know, and also a part of this community, this ABM community that is so parent centric. So you have a pretty unique viewpoint and whether we call it special needs or disabled or neurodiverse, you know, I think that's an ongoing conversation. And I do think this parent community does have so much wisdom to offer and so much knowledge that if it were to be tapped into, would first of all be so useful for other parents who are on the same journey.
[00:48:43] And also, like you said, it's just, it's so humanizing, you know, to be able to share and hear these stories. And also just that in and of itself creates a sense of community, which is so useful. So I think it's a wonderful project. I mean, it's kind of an amplification of what I felt during the ABM training, which was like meeting all of these completely inspiring parents.
[00:49:08] Carole Blueweiss: Yeah. Who might not have realized that they were inspiring, right?
[00:49:11] Ariana Speyer: Right, right. And something about the aggregate number of them all together, you know, made it really noticeable. And then also just kind of the strength and the endurance and the resilience of these parents, I think, is a model for how we can kind of move through life in a way that has grace and humor and connection that is so fundamental to a life well lived.
[00:49:37] Carole Blueweiss: Beautifully said. Thank you from the bottom of my heart that you agreed to talk with me and share with me because it's just great to get to know you a little bit more and you're so articulate and the words you use, you paint a picture with your words and so I'm excited for my audience to hear how you describe your journey here.
[00:50:01] Ariana Speyer: Thank you. I'm honored and grateful to be here. Thank you for having me.
[00:50:07] Carole Blueweiss: I started this podcast to learn from parents who I think are the best, most perceptive experts on their own children. Ariana was no exception, and hearing her perspectives made me think a little differently about everything from the pandemic to how we talk about and support our most vulnerable fellow citizens.
[00:50:27] You can learn more about Ariana and her work with children and adults at arianaspeyer.com, A R I A N A S P E Y E R dot com. It is my belief that all medical professionals and parents can gain wisdom from these podcasts. And it's my hope that politicians will also listen and be inspired to use their sphere of influence to affect policies that better support these families who are part of our community.
[00:50:58] Thanks for listening. Please subscribe to Wisdom Shared. It's free. And pass it on to anyone who may benefit. You can find Wisdom Shared wherever you listen to podcasts, including Apple Podcasts or at caroleblueweiss.com. I would love to continue to make these podcasts available and it would help if you would please leave a review.
[00:51:19] Tune in next month for another episode of Wisdom Shared. And finally, I wanted to end this episode with a recording of Calliope and her dad playing a little music together. [guitar and percussion music plays]