About this Episode
Do you have a child or teen who is considered “neurodiverse” compared to their peers? It’s a broad term used often used to characterize atypical patterns of thought or behavior. But as more students are labeled “neurodiverse,” is their way of thinking truly “atypical” or simply another way of functioning beyond the standard for which our current school systems are designed? Dr. Bibi Pirayesh joined Dr. Amy and Teri to weigh in on our current educational system and the ways in which it breaks down for students who don’t fit the typical mold in terms of how their brain perceives or processes information. From homework and IEPs to ways you can advocate for your student, Dr. Pirayesh brings her knowledge and experience to the table to help parents understand how our current educational systems are designed and why so many students are falling through the cracks.
About Dr. Bibi Pirayesh
Dr. Bibi Pirayesh is an educational therapist based in Los Angeles. Over her 15 years of practice, she has worked with hundreds of children, parents, teachers, and schools to help them better understand children’s learning differences and learning rights. She speaks on neurodiversity, educational therapy, and learning disability as a social justice issue on podcasts, stages, and universities. She started the “Difference Not Deficit Project” to help shift special education one story at a time. She is particularly interested in the inequitable ways in which scientific research is utilized in our special education system and she completed a doctoral degree in education and social justice at Loyola Marymount University. Today she continues to research and work in advocacy centered around a deeper understanding of the historical and epistemological factors that fuel the inequalities in our systems.
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Read the transcript for this episode:
Amy Moore: Hi, smart moms and dads, too. We are so excited that you have joined us for another episode of Brainy Moms, brought to you today by LearningRx brain training centers. I’m your host, Dr. Amy Moore, here with my co-host Teri Miller, and we’re both coming to you today from Colorado Springs, Colorado. And joining us from California is Dr. Bibi Pirayesh. Bibi is an educational therapist in L.A. Over her 15 years of practice, she has worked with hundreds of children, parents, teachers, and schools to help them better understand children’s learning differences and learning rights. She speaks on neurodiversity educational therapy and learning disability as a social justice issue on podcast stages and universities. She started the “Difference Is Not Deficit” Project to help shift special education one story at a time. Welcome, Bibi.
Bib Pirayesh: Thank you so much for having me. I’m so happy to be here.
Teri Miller: So glad to have you. Neurodiversity, that’s just a big word out in the media and all over town now. It’s an important topic. It’s something that we’re hearing about all the time. So before we dig into all that, I want you to just tell our listeners a little bit about yourself and what brought you to working on and creating the “Difference Is Not Deficit” project.
Bibi Pirayesh: Sure. So I came to this work, to educational therapy, in a little bit of a different way maybe than a lot of other people do. I know that a lot of people come to it from an education or teaching background or special education background. I came to it from a science background. I come from a family of educators, but I was very interested in sort of scientific questions around, you know, How does the brain learn? How does the brain work? What do we know about the way that the brain learns and how can that inform teaching? So my undergraduate and graduate degrees were really around kind of understanding that better. And I was part a part of a lot of, you know, different types of research programs and studies where we looked at that. But what was really frustrating is that there was a disconnect between what we know in research or what we learn and what happens in the classroom. And I was sort of confused by why doesn’t this information ever actually translate into the classroom? And I think I was just having one of those, like, What-am-I-gonna-do-with-my-life next moments while I was pondering some of these questions. And I took a job, you know, just to kind of make ends and like just to pay rent until I figured out the next step at the Kelter Center in West Los Angeles where they did a lot of—they primarily worked around reading remediation. But you know, they—it was a center that worked a lot with different schools, primarily with children with learning disabilities, and that was not a population that I was familiar with at all. And I went in and I just fell in love with the work, you know, because I really like working with kids, I discovered. But also because I was like, “Oh, okay, this is a place in which we can really see that connection between the research and the practice.” And, you know, obviously there’s a privilege to being able to work with kids in a one-on-one setting. But it just, I was like, “Wow. I see how this can, this connection can happen.” And so that was sort of my introduction to educational therapy, and how I went into the field. And then after that, you know, eventually I went off and I did all these different kinds of learning and, and training that was no longer in the academic sphere, but now in sort of the practicality of how to work with children. And you know, in neuroscience there’s a saying. You know, we say, “If you really wanna understand a process, you need to look at it where it breaks down.” And of course, for many of these students, it was breaking down, but then it was, you know, this incredible thing of where you actually gave them the support and did the remediation, and you could see the change right in front. It was almost like you’re seeing the neural connections take place right in front of your eyes. And there’s really, I mean, as you both know, there’s nothing, you know, quite as incredible as that in life. So then I, you know, I went off and I sort of did the whole thing and I started working as an educational therapist. This is a very long-winded answer to a question.
Amy Moore: It’s fantastic.
Bibi Pirayesh: But to, but to arrive at, you know, how I came to the Difference Is Not Deficit. So I then primarily, I live in West Los Angeles, that’s where I was working, you know, really enjoying the work. But then slowly I began to see that the type of client that walked in through the door never changes. It’s always kind of primarily wealthy families who can afford these types of services for their children. And so slowly this question of, “Okay, well now I feel like I’m contributing to the divide and, you know, why isn’t this information making it into the classroom?” And, you know, even though I’m seeing the connection between research and practice here, it’s still not making it to the general schools. And so, I naively went back to do my doctorate in education and social justice because I was interested in answering, you know, as a researcher, that was my next question, like, “Why is this not happening?” And I think I had a very, I think you would call it a very naive definition of social justice. And I had these visions of like bringing, you know, brain-based learning and educational therapy kind of to the public-school systems. Only to go in and really look at the history and the law and the systems and to realize that, you know, there is, there are very definite reasons about why this connection doesn’t happen. And so from there, my work kind of took on a different kind of advocacy angle where, you know, before I really saw myself as an advocate for a student, like, “I’m gonna go into the school system and I’m gonna advocate for their rights and I’m gonna, you know, help get them services and all of that.” And then it started to shift in, you know, following an understanding of it’s not just about advocating for the student. It’s about advocating and pushing for the actual systems to change, which, of course, is a much, much harder job than remediating a learning disability. But that’s, you know, where a lot of my focus is now. And the Difference Is Not Deficit Project kind of grew, you know, out of that idea of how do we utilize the personal and individual and stories and the voices of students who are neurodiverse, so that they themselves can connect with each other better, but also how do we use these voices in order to show that oftentimes the issue is not necessarily what’s going on with the child or with the student? The issue is how that’s being interpreted and what’s happening for them in a school system that is very much set up against them. So that’s really the, you know, the project in a nutshell. I know that was a very long-winded answer.
Amy Moore: So talk a little bit more about that. I’m intrigued. So, that last statement that you made think that the issue might not be with the individual student, but with the system. So what have you found then in your research, in your work, that is the problem in the system?
Bibi Pirayesh: Well, I mean to just, to just be very blunt about it, I think that, I think the system is working exactly as it’s supposed to for, you know, what the people who set up the system want it to work as. I, as you know, as you both know, we know how to deal with a lot of the issues that we see. We have the research, the research that we have gets used by people in other countries all the time, where their, you know, education systems are not like ours. And you know, where they’re actually serving their students in really positive ways. So then we have to ask larger questions about, you know, what are the forces that do not allow a lot of this research, a lot of this work to, to come into the public sphere. You know, like one of the things for me in the beginning that was so shocking as an educational therapist is I would go into schools and special education teachers especially would be so, they just would be so offended and, and you know, there was like turf wars. Like, “No, this is the way that we do it” and “This is the way that you do it.” And now you can’t, you know, they would sort of push you away because everyone is sort of like defending their own little territory instead of thinking about, well, how do we actually share the information that’s gonna be really useful for the kids? And then when you look at special education law, I mean, special education law is very specifically written to put the pressure on the parents. They are the ones that are gonna have to do all the extra work in order to get, you know, the basic things that their children need. Well, I mean, first of all, that’s really unfair to parents. Second of all, that immediately creates a social justice issue because parents who are of means and have resources are gonna be able to do that. And parents who don’t, are not gonna be able to do that. You know, even, even the most basic things, you know, like everything that we know about the science of reading, and yet we don’t teach reading right in our schools and you know, haven’t, and, you know, our literacy statistics continue to suffer. It’s mind boggling. Why does that, why does that happen? So, yeah, I mean, I just don’t, I just no longer think that the problem is, “Oh, we just haven’t found ways to make these connections.” I think that we have set up system that very, systems that very actively work to make sure these connections don’t happen. I mean, I know that’s a very cynical view, but …
Amy Moore: Yeah, that’s a very realistic assessment—
Teri Miller: Exactly.
Amy Moore: —of what we’re seeing. And so, why do you think that the translational aspect of research is happening in Europe, right? Where—because you alluded to the European schools—school systems actually, you know, looking at the research, taking the research and adapting what they’re learning and research into the classroom. Why do you think that that happens in Europe, but it’s not happening in America?
Teri Miller: Yeah. What is wrong with us? Why aren’t we getting, why aren’t we doing anything?
Bibi Pirayesh: It’s not, it’s not so much what is wrong with us. It’s more, it’s an ideological difference, right? It’s an ideological difference in terms of what our values are and what we believe. The real reasons, I think, grow from our ideology and grow from our economic system. In our country we are, in many ways, ruthlessly, capitalistic. And so everything becomes an industry. Education is an industry. Health is an industry. Everything is an industry. So you’re gonna try to set up rules that continue to, you know, if we have a school-to-prison pipeline, there’s an entire prison industry that is benefiting from that. If we have, you know, if we keep certain people—because to me, you know, social justice is about access to power. So in a society where we need to have some people that are sort of down here, and some people who are here, and some people are who are here, you’re gonna have to train that in. You’re gonna have to track people in those ways from a very young age. So, I think, and the other thing is, when we don’t do it well in schools, then we can create a whole private industry of which I am a part, where we then charge extra to do it right. So, you know, those are really the differences. Now, I don’t, you know, I mean, these are much, much larger questions. You know, I think that they’re, that Europe enjoys also certain other privileges, that allows them to kind of economically set things up the way that they have. But, you know, I don’t, I don’t wanna get into that whole history. But it in some ways, we can’t really even make the comparison between successful European schools and our system because we are, we’re so ideologically different and our system of economics and laws and everything are set up so differently. But the lessons that we learn from them is that, oh, no, the research that we do in our top universities here that they use, does work. It actually does work. And so, you know, that’s sort of part of that recognition of, “Oh, it’s not about research, it’s not about science, it’s not about education. That’s not where we’re really lacking,” even though the narrative continues to be at a political level, that our education system is broken and we need reform. But it’s actually other, you know, and this is one of the reasons why. You know, I really think that education is very political. I mean, it, it has to be political and all of us as, as educators and also as scientists, need to be aware of the political forces that shape the direction of research, that allow research results to go some places and not others. So yeah, that really has been kind of, the results of my digging a little bit deeper into some of these. Because I, you know, I didn’t come from that background at all. I came from a science background and I was like, science is, you know, amazing. And I mean, of course I still believe in all of that and I believe in empiricism as an epistemology, however, you know, when you look at the history of science itself and the ways in which science gets used to push different political agendas, I think that, you know, the best example we have today is what’s happening with the whole science reading issue.
Teri Miller: We’re talking big global issues and perspectives. Big thinking, big concepts. I wanna kind of take it back now and just really hone in on individual issues and what you can bring to our listeners. Just talk about neurodiversity for our listeners. If we’ve got some parents that are, like, “I’ve heard that term thrown around. People have said my kid has, you know, as a neurodiverse learner. What does that mean?”
Bibi Pirayesh: Can I … is it okay to … do you guys edit your podcast? Is it okay for me to pause for a minute or no?
Amy Moore: You can pause all you want. What we edit is if you say something that you wish you hadn’t said. Other than that, we let it roll ‘cause we’re human and
Bibi Pirayesh: I just have someone at my door that I need to let in.
Amy Moore: I’ll press pause.
Bibi Pirayesh: I’m just gonna do that. I’m sorry.
[Episode paused briefly.]
Bibi Pirayesh: So, you know, so neurodiversity, I feel like. In the last, 10, 15 years, we’ve sort of like really been exploiting the prefix “neuro.” We just like put it in front of everything and make it scientific. But I, but with that said, what I really see today is what I would maybe consider a neurodiversity movement. I really see people who, whose brains think differently from the way that our very kind of limited linear school system says a good brain, you know, how it needs to think and function. I really see people pushing back against that, and I think that’s really important. I think that if we truly want to go through the reform that our education system needs, actually, the voices that we should be listening to are the voices of the people that it’s not working for and oftentimes that’s, you know, neurodiverse. And I, you know, one of the reasons that I also like the word, you know, the phrase “neurodiverse,” despite my apprehensions about the prefix, is that, you know, when we talk about learning disability, in my practice over the years, there have been so many students who may not really qualify for, you know, based on our criteria for a learning disability, but who still cannot really function in the system. And they sort of fall in this gray area and, you know, it’s sort of like they’re lost at sea in many ways because we have like certain things in place, but you have to be severely enough impacted, for, in order to enter into those, you know, into those systems. So, I also really like the, you know, obviously it’s not something that’s like in the DSM or you know, something that you see like, you know, on an IEP but it’s very much a real thing. I mean, there are all these people who can’t quite fit into this linear way of thinking and being, and I think that the main message is we need to rethink what we see as sort of our classical education, because if it’s not working for so many people, it’s a problem. Right? Our education system should be a reflection of whatever it is that people bring to it and however it is that they think. But instead what we’ve done is we sort of, we do it backwards. We say certain people are going to determine what it is, and then we’re gonna look at you and if you don’t fit our criteria, we’re gonna label you or we’re gonna ostracize you, or we’re gonna shame you, or we’re gonna push you out. And that’s essentially what our system is now.
Amy Moore: Yeah. It’s interesting. Before you signed on, Teri and I were having this conversation that when you talk about the word “neurodiverse,” you have to kind of juxtapose it against the word “neurotypical,” right? So what exactly is neurotypical? Because in my mind and that, and we work with neuro neurodiverse children and adults, when you rack up all of the different ways that you can exhibit neurodiversity, right? ADHD, autism spectrum disorder, speech and language delays, traumatic brain injuries, auditory processing disorders, sensory processing disorders … Shall I just like list the entire DSM? Yeah. That leaves very [little] left. Right? So—
Teri Miller: Say it again.
Amy Moore: [Is the majority] actually neurodiverse and the, and there are only a few neurotypical categories left. And if we’re teaching to what we think is neurotypical, let’s teach to the masses and then just throw everyone that needs it in an IEP category, don’t we have it backwards?
Teri Miller: Hey Amy, let me interrupt real quick. Amy, check your plug again. You shorted it, you shorted it out for just one little half second. So we lost like two words, so just make sure your microphone plug is okay. Here we go. Real life.
Bibi Pirayesh: Yeah, I mean, I definitely think that we have it backwards, but we have to, we have to remember, you know, we have to remember why. So, I think that if we, if we were to, if we had an education system that was supposed actually be reflective of the human, you know, the different ways in which the human brain works and presents itself, then we probably wouldn’t have terms like “neurotypical” and “neurodiverse,” which I mean, let’s face it, are in many ways, just a rebranding of the ways that we used to talk about things like normal and abnormal. But it’s not okay to say that anymore. So now we’re saying it differently.
Teri Miller: Exactly. Different words, same meaning.
Bibi Pirayesh: Right, exactly. Exactly. So, but what we need to remember that is that the system is not even interested in the typical in the neurotypical or the normal, or whatever you want to call it. The system is set up to basically pick out the best of the best. It’s a sorting system, right? That’s what we wanna do. We wanna pick out the best of the best and then, I mean, we can, you know, argue about whether we actually do that. I don’t think we do. I think we pick out the people that have the most resources, but that’s a different argument.
Teri Miller: Ah, yeah.
Bibi Pirayesh: But you know, in a meritocratic system, which is the basis of our education system, that is the goal is to pick out the best of the best. So, in order for you to pick out the best of the best, you have to determine what you are saying is the best. So you are no longer looking at what exists and like accepting that and living with it and responding to it. You’re like, you’ve created now a value system that’s very hierarchical. And you know, even for the neurotypical kids, I mean, you know, they, they experience many of the same things that neurodiverse people experience. They also complain about how it doesn’t fit, how they have to censor parts of themselves, how they feel pressured. Like all of these things. It’s just, you know, and much higher degrees for people who are actually made disabled by the system. A lot of the neurotypical kids have many of the same issues, but they have the ability to still kind of just survive. Right? And I think that it’s really dangerous when we have a system that is, you know, that people have to survive instead of, you know, instead of, you know, the system doing the things that it claims to want to do, sort of those idealistic, goals that we, you know, John Dewey’s definition of, you know, you know, our democratic goals for education. I mean, that’s just rhetoric. We don’t really do that. We don’t really do that. So I think that as educators, as parents, as students, we really have to interrogate in order to understand, how the system is truly functioning and the fact that the system is set up to sort out that which is not, which it does not consider valuable or good. And, and the fact that by doing that, it’s essentially saying that a very large percentage of the population, their experience, their way of being is unimportant and dispensable. I mean, that’s—
Amy Moore: It’s tragic. It is.
Bibi Pirayesh: Yeah. Yeah.
Teri Miller: You say, so getting back to that, you know, even that idea on a more individual level, you’ve talked about a child’s diagnosis as a transformative moment in parenting. So what do you mean by that? Can you tell us a little bit more about that? How that really impacts individual families and our parents that are listening?
Bibi Pirayesh: Yeah. I mean, honestly, we could do a, a whole conversation just about that. I feel like, I mean, I think in the same way that I think that neurodiversity disability can potentially offer up a transformative moment for us as educators and for, you know, people who are kind of creating and upholding the systems, it’s the same thing with a family. However, I think it’s a lot more, um, you know, intimate and, and personal and nuanced when it comes to families. Oftentimes what I see with, with families is the child is essentially a symptom of other issues that are going on. And I, you know, I don’t wanna, you know, pretend like a diagnosis is not a real thing and it’s just like a symptom of, you know, environment. However, a lot of learning disabilities do run in the family. There’s a genetic component to them. A lot of parents themselves struggled with much of the things that they see their children struggle with, but they lived in a time where, you know, we didn’t have the space and the place for them to really voice any of that. And so oftentimes what I find is, there’s an incredible amount of grief and an incredible amount of resistance to seeing and accepting their child the way that they are, because it essentially means that they now have to go back into their own childhood, into their own background and sit with their own pain, which they have been essentially, you know, ignoring or pushing away. And so, so I understand the resistance to that. You know, a lot of times you hear parents say things like, “Oh, I don’t want my child that medication,” or “I don’t want my child to have a label.” You know, and, you know, some people think, “Oh, well, you’re just being ableist” and, you know, you know, “Why are you … ?” but it’s, it’s usually more than that. It usually is emotionally a lot deeper than that. But I think that when they do, you know, and it takes an incredible amount of courage and I think it also takes an incredible amount of support, which is why I really do see educational therapy as work that has to be done with the whole family, you know, and I don’t really believe in models where a child just comes into an office and then, you know, goes, because you do as, as the therapist, you do have to understand the family dynamics and you have to support everyone along the journey. So if they are able to get that support and if they’re able to sit with that pain and sit with that grief, their child can actually help them move through it. And this is, you know, it’s one of the reasons why I think, you know, a lot of the, the kids that I work with are such incredible gifts to their schools, to their classrooms, to their peers, to their families. But all of that gets pushed away because ideologically and in some ways, I think also naturally as human beings, we’re so afraid of difference. We’re so afraid of anything that’s sort of like outside the herd. But if we allow that to come in, if we listen to it, it can, it can be incredibly transformative for parents themselves in terms of their own life. And then, in turn, in terms of their parenting in general. I mean, that’s one example in which I think it could be quite transformative.
Teri Miller: Yeah.
Amy Moore: Well, and you talked about in the beginning of the episode, you know, about how our education system is set up, that it puts so much of the emphasis on the parent’s role in helping their child get the needed services and interventions and supports that they need. And if the parent is really struggling to process a new diagnosis themselves, right? Where you’re saying they’re being triggered, you know, by that diagnosis, “Oh my goodness, this is how I suffered as a child. This is how it impacted my family and my schooling, and now I have to go through this with my own child.” Right? They’re not in an emotional state to be their child’s advocate in the moment. Right? Because we have to support them too. And so what they’re then doing is walking into the school and getting resistance and pushback.
Teri Miller: Right.
Bibi Pirayesh: Right. And I mean, they’re not, they’re not wrong in all of their fears and they’re, you know, they’re, you know, essentially feeling really terrible that this is happening because they understand that we live in a system that’s very ableist and there’s a great deal of shame around these diagnoses, and now their child is gonna have to go through life carrying this extra burden. And that’s, you know, one of the reasons why I think every single one of us has to, at the same time that we are advocating for a student, we also have to remember to advocate and remind that it is in fact the system that is disabling the child. And you know, because otherwise, if we’re just going around saying, please, please let me, you know, please let this child take part in things, which is essentially what the word access in IDEA is about. All we’re really doing is upholding the system. We’re saying, okay, so this is the way that it is. Please, please, please, you know, let us also be a part of this. So I do think that parents, it makes sense that they, you know, have their own kind of emotional trauma around this because their own childhood stuff aside, they also know now that now their child is gonna have to face a very, very difficult world. And like you said, we don’t, you know, we don’t even have the resources for the children, much less the parents. And you know, as you know for, there’s a lot of literature, for example, around parenting or even being the sibling of, you know, children with, you know, on the autism spectrum and the amount of pressure that is placed, not just, you know, the diagnosis of the child, but all the systemic issues that the parent now has to deal with because we don’t have a system in which, they can just go one place and get answers. Most parents are like, “Now I’m going to O.T., now I’m going to ed therapy. Now I’m going to this, now I gotta do this service.” It’s exhausting on top of running your life and usually working a full-time job to pay for all this stuff ‘cause so much of it is not covered. So, so yes. I mean, the way that we have set it up, essentially burns people out. And then once they’re burned out, we’re like, “Well just go to the,” you know, we either say, “Just go back into the psych industrial complex and try to get mental health help.” Or we say things like, “Oh, well, you know, you just need to de-stress and, you know, wellness programs and like, meditate for,” we just say these ridiculous things where again, and again and again, the onus is on the individual. The individual has to do the impossible work of healing and processing problems that are happening at a systemic level that no individual could ever process. So the burnout is very real. I mean, it’s very real, but I think recognizing that it’s not you, this is the setup, this is the game, some of that can help to alleviate some of the stress.
Teri Miller: I feel like everything you just said, I wanna, I wanna capture that. I wanna go back when this is produced and put my phone on and record that ‘cause I’m just about in tears. You get it. You see me, right? I’m, I’m that, I’m one of those parents.
Bibi Pirayesh: Yes.
Teri Miller: And I’m like, okay, now, now I’m fighting to get the 504 meeting and I’m pulling teeth to get these teachers involved and administrators involved, and I’m fighting to get her into the right evaluations and then the right neuropsych testing and then, okay, she’s supposed to get with a psychologist, but then they’re saying meds. And I mean, my brain is just exploding with trying to keep up with it, like you said. Amidst your life. And so for listeners to hear what you just said, just hear that parents, that you’re not alone. You’re seen. This is hard.
Bibi Pirayesh: Absolutely. Absolutely. I mean, most parents eventually, like they basically have to go through basically a master’s degree in order to figure out what it is that, you know, whatever the diagnosis is needs. And then they have to basically get a law degree where they have to figure out, you know, how do I navigate this in the school system? And then there is the emotional, you know, component of, you know, just dealing because it’s, there’s an incredible amount of grief when you get a diagnosis. Nobody talks about that. There’s grief for the child. There’s grief for the parents. There’s grief for the siblings, because oftentimes what happens is they get pushed to the side because all of the attention now has to go to, you know, the, the child with the diagnosis. So it’s a huge, huge undertaking. And like I said, our systems are set up to just say, “It’s on you. You know, you are gonna have to fight for it.” And, of course, parents are going to fight for it because it’s their child. It’s the most important thing to them. But you can’t, you can’t always keep that up. And oftentimes you lose the fights because the way that the system is set up. So I think, I think, like you said, just remembering that; normalizing how difficult it is I think is hugely important. And not just difficult, but oftentimes impossible.
Teri Miller: It’s so good. It’s just comforting to hear that.
Amy Moore: So we need to take a break and let Teri read a word from our sponsor, and when we come back, let’s talk about what do we do with all this, right? Like what are your recommendations based on the fact that this is the system and we have to live and work within it? When we come back.
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Amy Moore: So here we are talking about the struggle and the frustration of like working within a school system that has social justice issues, has access issues, is, you know, set up as you described to find the best of the best and not necessarily to honor and celebrate neurodiversity. What do we do with this? What is your advice for parents listening that are in this struggle?
Bibi Pirayesh: Well, I’ll just add one thing. I think that in addition to finding the best of the best, the other job of the school system is to train people into the job market, into the places that they want people to go. So that’s sort of another component of it. I mean, I’ll be completely honest, I think there are two, two responses to this. And this is something that I, you know, something for parents, it’s for educators, it’s for therapists, it’s for medical professionals, everyone. Number one is community. You have to remember that that is really the only way forward. Unfortunately, you know things, you know, places that would naturally be community—so for example, school naturally usually provides community for parents. But when you have a neurodiverse child, school becomes your enemy. And so, you know, that that shuts that community down immediately. So I would say the first thing and the most important thing is to make sure that you create and become parts of communities where you can gain some of the support. It could be something as simple as listening to those podcasts or, you know, there are, there are little pockets all over the country. It’s one of the reasons that I think the Difference Is Not Deficit project is so, you know, important to me is because. That, you know, it’s so important for people to know that they’re not alone and the struggles that they’re facing are struggles that everyone faces. And if you put any human being under these same circumstances, they’re gonna feel the same way. So the more you can connect with others who are also going through the same thing, the more important. And then the second thing is you have to recognize that you have to be politically conscious and politically active. The only way that we’re gonna be able to make these shifts is if more and more and more of us become conscious of the systems that are creating these problems, the more conscious we become of those things naturally, the more politically aware and active will become. So, you know, to, to understand, because I think there’s such a deep message in our, in our schooling system and this also is by design, where we say, “Oh, school can’t be political.” You know, we have to separate. I mean, nowadays that’s almost a ridiculous statement because it has become so political. But when I say political, I don’t mean like we need to go into board meetings and fight about books. What I mean is that we have to recognize that we as, as individuals and as a community as a whole, hold power. We have political power and we have to exercise that political power. And we, and that essentially to me is the real point of schooling or should be the real point of schooling, is to raise democratically aware citizens. So again, all of this. And you know, I think learning disability is probably one of those places where you’re not gonna find people, you know, polarized. Everyone can come together and agree that the way that we handle this is a big problem. So again, this provides another opportunity for us to be able to think about where are the tension points, where are the places that we need to shift the way that we do things, and I think one of the major ways is that we need to become more politically conscious.
Amy Moore: Yeah. So important, and I love that you made that distinction, right? That it isn’t just about showing up and saying, ban this book, or don’t ban this book, right? It’s a bigger fight.
Bibi Pirayesh: It’s the recognition that in order for things to change, we have to act. We have to act. We can’t just, and you know, to go back to what you were saying, Teri, I believe that one of the reasons that we set things up so that everyone’s always exhausted is because then there is no energy and no cognitive space left for some of these things like, you know, political consciousness raising, right? And I think that was one of the great gifts of the pandemic. I mean, it gave us all an opportunity to get out of the rat race for a minute and to sit, and I think a lot of the political upheaval that’s happened since is a result of people having the time to be human for a minute.
Amy Moore: And so at what level does this activism start? Or not even activism, but like, I mean, do you write your congressperson? Do you run for Congress? I mean, what are some of the ways that we can begin to impact change?
Bibi Pirayesh: I mean, yes, you do. There, there are people who are, you know, much better experts on all of that than me. My emphasis always is to, is to actually keep it quite small. And to recognize that it is in the smallest actions and the smallest shifts in your thinking that sometimes you see the bigger, biggest change. So for example, you know what I was saying earlier, when you’re in an EIP meeting or when you’re advocating for a child, just stopping for a moment and asking yourself, “Am I advocating for the child or am I advocating for the system? What am I doing in this moment? What am I doing in this one response, in this one decision, in this one EIP goal that I write?” Those are sort of like the really minute but incredibly important places, because my belief is, that the more you do that in terms of your own consciousness, the more the larger stuff will naturally happen. A lot of times we get into trouble when we begin to take action before having done that work in ourselves. So my suggestion is always to, you know, start in the smallest places, like examining your own thinking. What about the way that I just thought about this is actually quite ableist? Because we all, you know, we’ve all internalized this kind of, you know, we’re like fish in water, we’ve all taken it in. So I would say start with yourself first.
Teri Miller: Okay. I wanna, I wanna jump on that from an individual perspective. And I know we’re, we’re just about out of time, but from that parent in it, like I’m about to have that 504 meeting next week. And one of the things that’s coming up is, is the homework issue. And so my kiddos, my kiddo that we’re doing this for, she has such a struggle. She’s so cognitively fatigued by the afternoons and evenings, and we know that it’s very important for her to do things like her running club and gymnastics, and so we’re letting her do those things that give her life and energy and joy. And the homework drains her. It’s horrible. But, so I’m heading into this thinking, “Okay, I’m gonna, maybe I’m looking at this system, I’m trying to please the system.” Okay, what can we do so that we have better communication from teacher to parent? We need a plan in place so that we know what the homework is so that she can get it done. And instead, what I really think in my heart is, no homework. I would say it’s not good for her.
Bibi Pirayesh: Yeah. I would say trust your gut and be in tune with your child and let them lead. You do not, you are not under any obligation. There’s no law that requires any child to do homework. The way that I work with, uh, a lot of kids is I say, “We’re gonna do 30 minutes. We’re gonna put on the clock and we’re gonna do 30 minutes. Whatever you get done in 30 minutes, great. Whatever doesn’t, we just write on the, on there, “This is what we got done.” Whatever the, you know, the reasonable agreed upon, you know, thing is. And then that’s it. That’s it. I would not force my child, my child to do work that is actually detrimental to them, and you are not under any kind of legal obligation to do that. So I would not feel guilty about that at all.
Teri Miller: Okay. Oh yeah.
Amy Moore: The legal issue is the clock hours in the seat during the day.
Bibi Pirayesh: Exactly. Exactly. Right. Exactly.
Amy Moore: It’s not, it’s not the number of minutes of homework.
Bibi Pirayesh: Right.
Teri Miller: The pushback. But the pushback that parents are gonna get, that parents do get, that this parent gets, is, “Well, but we still expect her to, she still has to do that history project and then she still has to do that science project and then she still has to do the—” You know, whatever. So there’s all these, oh great. No homework. But then there’s these special things that come up. Where, you know, she ends up in tears every night and it’s like this homework issue is contraindicated. I don’t care. Give her a zero for that project. Or don’t assign that project. Like there’s gotta be a better answer.
Bibi Pirayesh: It sounds like, it sounds like the accommodations are not in place correctly and you need to really revisit, ask to revisit those. A lot of times when you get that. A lot of times teachers don’t know. They don’t, they don’t recognize that they think they’re assigning something that should take 20 minutes. They don’t understand it’s taking the student two and a half hours. Oftentimes when they do understand, they begin to make those accommodations. So I think in your case you need to, you need to really get into the question of the accommodations, because those cannot be in place if this is what’s happening.
Teri Miller: Yeah, no, that’s good. Yeah, we’re just starting out, so this is, this is such great feedback.
Amy Moore: And like Bibi said, when you start with those small conversations, then it can begin to create a mindset. Where if you build empathy in the teacher’s minds, “Hey, here’s what’s happening in my home when my child has to do this. Then the next IEP or 504 plan meeting that that teacher attends, they’re gonna remember, “This is what happens in the home at night.” Right?
Bibi Pirayesh: Exactly. And that’s, and my computer just told me it’s about to die, so I’ll just say this really quick. That is so, when I say remembering that this is a war zone and you are in a fight, you are resisting every single time. You go in there and you do this and you feel deflated and you feel like it’s, you are not getting anywhere, you actually are. That is the fight you are doing it. Every single time you say these things and, and you know, fight that fight, something is getting planted in there, that’s gonna make changes, if not for your child, for somebody else’s child. So don’t see it as, oh, I’m just like treading water. You’re not. That is the fight. That is the fight.
Teri Miller: That’s so good. All right.
Amy Moore: This has been such a fantastic conversation. We just wanna thank you, Dr. Bibi Pirayesh for sharing your wisdom, your insights, your encouragement with us listeners, if you’d like more information about Bibi and her work, her website is oneofonekids.org. You can connect with her on Facebook, Instagram, or YouTube via @OneOfOneKids. We’ll actually put her links, all of that and her handles in the show notes. So thank you so much for listening today. If you like us, stop what you’re doing right now. Follow us on Instagram and Facebook at @TheBrainyMoms. Let me try that again at @TheBrainyMoms. Do it now before you forget. If you liked our show, we would love it if you would leave us a five-star rating and review on Apple Podcasts, and if you would rather watch us, you can find us on YouTube again at @TheBrainyMoms. That is all the smart stuff that we have for you today. I hope that you feel a little bit smarter than you did when you started our episode. Catch you next time.