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EPISODE 17: Parenting as Advocacy: The Radical, Reflective Work of Raising Neurodivergent Kids
65 Plays17 days ago
In this very special episode of The DIVERG. Podcast, we’re hosting our first-ever panel—and the topic is one close to our hearts: Neuroaffirming Parenting.
Joining us today are three incredible parents and advocates who are leading voices in this space:
Leila Toigo (@SprinkledSpectrum) – Mother to an autistic daughter and passionate advocate for centering autistic voices in how we approach parenting and support.
David Coe (@DaDavidCoe) – Father to Asher and served as a board member of his local Regional Center in California. David brings a grounded, fatherhood-forward perspective to the conversation.
Elena Croy (@AtHerOwnPace) – Writer, advocate, and mom to a neurodivergent son and a daughter with Down syndrome. Elena works closely with NDSS, fighting for better resources and recognition for families in the disability community.
This panel is honest, hopeful, and full of life. Whether you’re deep in the journey or just starting out, you’ll walk away feeling seen, supported, and a little less alone.
Tune in for connection, community, and real-talk about what it means to parent with intention, empathy, and respect for neurodivergence.
Recommended
Transcript
From Pathologizing to Strength-Based Perspectives
00:00:00
Speaker
So often we see like there is a lot of pathologizing specifically in the autism community and it actually is it's just shifting the focus to a strength-based lens and viewing our children as whole and not as not as broken versions of neurotypical kids but as beautiful beautiful versions of autistic kids.
00:00:24
Speaker
um and sort of just rolling that into how we parent. And there's a lot of work in that because I think what we don't realize is that we all, whether like it or not or want to admit it, have inherent ableism that we just grow up with, right? So um it's it's work and daily work, certainly for me, ah but super important.
Bridging Knowledge and Community in Parenting
00:00:50
Speaker
Welcome to the Diverge podcast, inclusive of autistic and other neurodivergent voices. We exist to bridge the gap between specialized knowledge and everyday parenting. We are on a mission to bring together the most forward thinking experts who are deep in the trenches, championing neuro affirming and developmentally based approaches to therapy, to education and life designed for parents, educators, friends, and allies conversation by conversation, insight by insight.
00:01:18
Speaker
We are building community and making space for all kinds of minds.
00:01:26
Speaker
Hi, everyone. Welcome back to the Diverge
Introduction of Guests and Their Perspectives
00:01:29
Speaker
podcast. We have been on a little bit of a hiatus just due to life and busyness. So thank you for your patience. But today we are back with an amazing episode, potentially one of my favorites.
00:01:39
Speaker
I say that about every episode. But this is our first panel. It is a neuroaffirming parenting panel where we are going to focus on what it means to be a neuroaffirming parent and what that looks like in everyday life. Today, we have three guests, all of whom are parents and advocates with Instagram accounts. The first is Leila Toygo. She is at Sprinkled Spectrum on Instagram.
00:02:02
Speaker
She is the mother of an autistic daughter and a fierce advocate for the role that autistic adults can play in how we approach neuroaffirming parenting today. She's also built an amazing community on Instagram. And if you are doom scrolling in the middle of the night, she will surely have something cathartic for you in the feed.
00:02:20
Speaker
um Representing the dads today, we have David Coe. He calls himself Asher's dad on Instagram at the handle at the David Coe. He has served on the board of his local regional center in California, is very involved in all things Asher and brings the unique perspective of fatherhood to today's panel. Thank And finally, we have my good friend, Elena Kroix. She's the mother of two children, um a neurodivergent son and a daughter with Down syndrome. Elena is a writer, an advocate, and she spends a lot of time working really closely with organizations like the NDSS and the Alliance for Restraint and Seclusion, advocating for better practices.
00:02:58
Speaker
and more resources and recognition for those with disabilities and Down syndrome. So today's panel is fun. It's full of light, but it's also a great place to turn if you feel like you are doing neuroaffirming parenting wrong, or even if you just feel alone kind of in the process, because I think there's a lot of encouragement here and a lot of insight into what a journey it is.
00:03:20
Speaker
um And most importantly, permission to learn and grow. which I think is all our kids are asking from us. So can't wait to see you at the end of the episode. You can connect with all of these people offline. But before that, let's jump in.
00:03:33
Speaker
Hi, everybody. Today we are doing what I'm calling a neuroaffirming parenting panel on the podcast for the first time.
What is Neuroaffirming Parenting?
00:03:40
Speaker
We generally talk to a lot of experts. And today I just wanted to have a conversation about what some of this stuff looks like in day-to-day practice.
00:03:49
Speaker
So I'm going to let everyone introduce themselves and then we'll get going. right. Elena, do you to start? Oh, certainly. um Hello. My name is Elena Croy, and I'm in northern New Jersey. i have two children.
00:04:02
Speaker
um My daughter, Hope, is nine years old, and she has Down syndrome. And my neurodivergent guy is Henry. He's seven. And he also has some orthopedic disabilities. He has limb differences. He has scoliosis. So we hit, I don't know, we hit a lot of boxes, a lot of check boxes. I think that's how I um received my invitation to Diverge. i And yeah, I um personally, I'm usually advocating more in the Down syndrome space. um I do write on disability parenting for birth and birth and birth moms and, um you know, everyday fighting emails with the district. Like I do a lot of writing that way. And she just finished editing a book too.
00:04:45
Speaker
So on potty training. Yes, we just, um through an independent publisher, published Potty Training Children with Disabilities. um which is very exciting. Actually, the the title is actually the Adaptive Toolkit for Potty Training Children with Disabilities. welcome and We have parent experiences throughout. We tried to get like all different types of needs. um And the lovely um host here, Christy, is also featured in the book.
00:05:16
Speaker
So I'm glad you brought it up also. Yeah. so A lot of experiences, a lot Yeah, a lot of potty talk. I'm very excited to talk about potty. David, how about you? Hi, I'm David Coe. I'm located in Los Angeles.
00:05:31
Speaker
I have a six-year-old autistic boy. and i'm We're pretty sure that he's got a couple of other diagnoses that ah are just not official yet.
00:05:44
Speaker
ah We're pretty sure that He is also Gestalt processor and ADHD, potentially PDA. For the PDA-ers.
00:05:57
Speaker
Like that was that was like everyone like, like, a like he, like, you know, autism is generally, you know, where like, like the, yeah the space I spend most of my time in.
00:06:08
Speaker
But what learning about PDA, I think changed the way I parent more like, discovering that that he was autistic.
00:06:20
Speaker
And ah so, yeah, I am. I'm just i'm I'm just a dad, like just trying to get my kids services. And yeah I've kind of taken to I've always been a weirdly open person myself. It's my tism.
00:06:36
Speaker
Yeah. And so like sharing my experience online has come really natural to me, especially because there aren't there aren't a lot of there aren't a ton of dads who i who are out there just, I think, honestly sharing what it's like. And so I felt like, you know, this there's there's there's nothing.
00:07:02
Speaker
I think a lot of a lot of my philosophy in life is like filling in the gaps and filling in the holes. And i think that's kind of how like my public journey in this space started.
00:07:16
Speaker
i also, I was in California. We have the regional center system. yeah That's how my son was diagnosed. Yeah. like ah And so I spent three years on the board of my local regional center, oh well which was an experience within an experience. And there was so much like learning about the other side of that ah that I'm really grateful for as well.
00:07:44
Speaker
Very cool. Yeah, we were actually in California when my son was diagnosed and the regional center is who gave him his like official official. It's very interesting. yeah Yeah. They kind of run things out here.
00:07:57
Speaker
Very cool. For better and for worse. Awesome. Layla, you're up. Yeah. Hey, my name is Layla. you I'm from a five-year-old autistic daughter who is a classic GLP, the shot language processor. Sorry, I got it. I use a lot of acronyms that I need to explain.
00:08:21
Speaker
And I have a two-year-old daughter who we're also suspecting is autistic. um She is a funny cat. She's, we think, a dual processor, which has been really interesting, something that I'm super passionate about, probably talk about in this conversation. Oh, please do.
00:08:36
Speaker
The shot language processing. Yeah. Yeah. I started a platform almost a year ago in July last year because I felt like I wanted community and I wanted a space to um really amplify the lived experience of autistic people because I myself learned so much from more than any expert. I learned so much from listening to autistic adults. So I was like, why don't I like to try to start a community where i can help amplify those experiences and then also just share some of our journey. So.
00:09:09
Speaker
Yeah.
Philosophy and Challenges of Neuroaffirming Parenting
00:09:10
Speaker
That's what we did. That's really cool. And your content is also the most fun, cathartic thing to scroll through in the middle of the night. Thank you. I appreciate that. I feel like David is also hilarious too. Very good. Yeah. Yeah. There's like, well, everybody is um doing a great job. well Oh, awesome.
00:09:30
Speaker
All right. So let's kind of like jump into this. um So everybody sort of shared their background. One of my favorite questions. um Actually, I'm going to pause. We said neuroaffirming parenting. Just kind of want a caveat for everyone listening.
00:09:44
Speaker
The way I view neuroaffirming, and anyone can jump in on this in terms of parenting, is neuroaffirming is the idea that autism is a neurotype. And when you roll that into your parenting, it means that you have a lot, at least in our case, to unpack.
00:09:59
Speaker
um and really think about, okay, what is the most affirming way I can guide this child given that they kind of have a different neurotype. And maybe, you know, I think in our house it shows up as like they're not going to be a school kid or they're not going to be a sports kid.
00:10:16
Speaker
um Or, you know, sometimes they need a little extra support here and there. So, like, how can we create positivity around those things and not shame? Like we're not always trying to get them to... be neurotypical for lack of a better phrase.
00:10:29
Speaker
If anybody wants to jump in and add to that, but just thought good for listeners. All right. So so go ahead. As like a, not like the guy, like as like someone who's like mostly uneducated in terms of like, I have no special, I have no special education or training in the field of autism, like outside of just my lived experience.
00:10:53
Speaker
Uh, neuroaffirming, neuroaffirming is something that's, I have, like, I've come to, like, to me, it almost doesn't even something, isn't even something that only applies to neurodiverse people. Like, it like neuroaffirming care is something that, like,
00:11:08
Speaker
is just something that has always been centered in my my life. ah And i was I was listening to some of your older episodes. And to me, like one of your other guests said it perfectly, that like neuroaffirming care is just, it's just meeting people where they are.
00:11:23
Speaker
It's just, it's it's leaning in, it's leaning into people's strengths. And you know, that' that's something we should do no matter, you know, like disabled, disabled, abled, you know, like I think that yeah that's just a good way to live life.
00:11:39
Speaker
Right. Strength and interest-based. I'd say we do a lot of interest-based around here too. Yeah. but I think to just sort of like roll off of that, um it is, in my opinion, so often we see like there is a lot of pathologizing specifically in the autism community.
00:11:59
Speaker
And, um, it actually is, it's just shifting the focus to a strength space lens. Um, and viewing our children as whole and not as, not as broken versions of neurotypical kids, but as you beautiful versions of autistic kids.
00:12:18
Speaker
Um, And sort of just rolling that into how we parent. And there's a lot of work in that because I think what we don't realize is that all, whether we like it or not, or want to admit it, have inherent ableism that we just grow up Right. So um it's it's work and daily work, certainly for me, ah but super important.
00:12:40
Speaker
Yeah. And you actually bring up a good point, too. There's been so many times, I think, in the in the journey where ah so I live on the East Coast. Elena's here, too, in New Jersey. um And there's there's no place where people love their grit and tenacity and like work ethic more.
00:12:58
Speaker
And it, i was always kind of proud of mine and I still am but raising my son has forced me to have to take a step back and say, oh yeah, no, sometimes we should not be gritting through it.
00:13:10
Speaker
Like that, that's not life. It doesn't mean you come out better on the other end. um And so it challenges a lot of your value systems. I feel like even. Or at least brings up at least brings up the shadow side of them. Because I love grit when grit is necessary. but For sure. And maybe grit looks different for your son. Maybe there's still a place for grit in his life. It just takes a different form.
00:13:33
Speaker
Oh, that's really good point. It's so funny how you bring up the different perspectives from like different areas of our country because I am from New Jersey. I'm in New Jersey. I'm one town over from where I grew up. And you say Britain. I'm just like, oh, but that's just every day.
00:13:46
Speaker
You know, we're like, oh, there's a lot of traffic. I'm like, no, there's not. You know, like little things that when you don't have that outside perspective and something is all you know, like the ableism, not even realizing it. And I've actually learned over the years you can't tell someone that they're being ableist.
00:14:00
Speaker
Yeah. That I learned like the hard way. and like, that's ableist and that will shut someone down. So they are no longer on your side. Yeah. But yeah why slave I've lived in a couple different regions. I feel like all the regions kind of have their thing that could be difficult if you are an autistic neurotype. So like we were in LA for like 15 months and the emphasis on, i was like in Santa Monica working in like West Hollywood, the emphasis on how you look and how you show up and what part you're playing when you get there, no matter what industry you work in. And I was like, I actually moved back to the East Coast because I'm like, I can't like i can't put this level of intensity into parenting.
00:14:44
Speaker
Especially, and i live I live in the valley. and oh yeah. Totally different vibes. Is it really? Yeah, I know. we should have We should have shopped around before we were like, let's just move to Santa Monica. The beach is there. Monica is great.
00:14:57
Speaker
It's beautiful. It's more walkable and the beach is right there. yeah But it did also is definitely. I think what like this speaks to to me is how cultural and societal systems still as much as we want to believe are accessible and supportive and inclusive they're not yeah they're just not as much and it doesn't matter where you are we find versions of how it's not inclusive of different neurotypes um specifically neurodivergent folks and right and that goes back to the neuro affirming parenting thing and why
00:15:36
Speaker
We are like living and breathing every day so that people understand like, hey, you know, they get to take up space too. They get to be as they are in these places too.
00:15:47
Speaker
Yeah. And I think for me, one of the biggest sort of pieces of this journey has been even before I knew that like neuroaffirming parenting existed or even had really dealt with some of my like my own sort of internalized ableism is I never really understood in the autism space why certain things that kids just do at certain ages were a much bigger problem.
00:16:13
Speaker
it in the ah in certain spaces in the autistic world. So, um or I should say people working with autistic people. Like, for example, um you know, this is the first thing that comes to mind, but feel like I've shared it a lot. Like, eloping, right? Like, if a four-year-old isn't holding your hand in the parking lot, it's eloping. Oh, my God, we need this, this, this, and this, and this. And it's like, no, four-year-olds don't do that. but Like, you hold their hand and you teach them how to walk through a parking lot. That's not, that has nothing to do with neurotype. That's just...
00:16:42
Speaker
age and development. um And I think I saw that kind of from the beginning. And then when I found this more like neurofarming conversation, was like, oh yeah, like you're, that's what you mean by pathologizing things that like just don't need to be pathologized.
00:16:55
Speaker
And pathologizing also like diagnostic overshadowing is something that we've encountered so much, especially with our daughter is taking a loping, for example, she was never an eloper.
00:17:06
Speaker
But this is a very common term, right? Like we know in the autistic community, we know it in the Down syndrome community, many communities have this idea that these children might become elopers.
00:17:16
Speaker
But it turns out she started eloping when she was experiencing school trauma. And we all looked at it, we didn't know about it. And we all looked at it and said, oh, it's because she has Down syndrome. Talk about internalized ableism, right? And it wasn't, why is this starting now? It was just, oh, we reached that milestone as if it was something that was destined to happen.
00:17:39
Speaker
Yeah. And we were missing other signs, right? Like, that's sad. You nailed it with the why. Like, once we, I think every single one of us need to be asking why when there's any behavior, I hate that word, but any behavior that's being exhibited by our children, because typically there is a reason for it.
00:18:00
Speaker
And instead of pathologizing, and Oh, it's just because they're autistic. It's like, no, actually they're communicating something. Right. Yeah. I feel like every, every morning we wake up and like put on our detective's badge.
00:18:13
Speaker
Absolutely. Yeah.
Understanding Behaviors and Expectations
00:18:16
Speaker
And I think like one of like, when I, when I, when I talk to my friends who have typical children, like we, we end up dealing with a lot of the same things and like typical children have these behaviors.
00:18:32
Speaker
and They don't get labeled as behave, you know often as, as behaviors with children and, you know, make that make, make of that what you will. But like the, the one, the one major difference that,
00:18:47
Speaker
is challenging for at least at, at you know, at least when you have like a non-speaking child or I don't, I don't, I prefer to call my son pre-verbal and not non-verbal because there's a but big difference, even though he doesn't talk yet. Yeah. ah But that like we really have to like we like most people, most parents get to start by they get to get to the problem solving pretty quickly.
00:19:12
Speaker
And we spend a lot of time on the why on the because they can't they can't just tell us what's happening. So like we have like we have to sit with it for a while and like play and play detective and and look at all the evidence. And it's it's really challenging because, you know, because oftentimes we don't get that definitive answer.
00:19:33
Speaker
You almost feel like you're failing them. You're like, I want to help you. Like I just, it's my duty to figure this out. Yeah. It's really, I struggle with that too. um Something you said I wanted to to comment on. Oh, you said something about how neurotypical children have behaviors as well.
00:19:51
Speaker
And some, there's this quote by this guy, Barry Prusant. He said, he's a trained flp but he's worked as like a psychologist with autistic kids for like 60 years he has a podcast as a book he's one of people i like stan him but he said that and i'm i'm paraphrasing he said autistic traits are human traits amplified yeah so they're human trait deeply human yes but amplified in frequency and intensity And that's how we know that there's a difference there.
00:20:23
Speaker
um Like all of us did, but not to the same degree. Right. Right. And so I think it's just like a really important understanding of like, OK, yeah, this is a deeply human experience that this person is living.
00:20:37
Speaker
And and just sort of seeing it from that lens as opposed to like, you know, the pathologizing like broken lens. Yeah. So I haven't totally bought into, you guys are going to like kill me, but I'll explain myself.
00:20:48
Speaker
I haven't totally bought into, i mean, maybe, maybe. um I haven't totally bought into the idea of, um for example, like the needs are the same or behaviors are the same that What my daughter does is similar to, or what my son does is similar to a neurotypical child.
00:21:08
Speaker
And the reason is because, and this is more understanding, like the system that we're all living in is that the repercussions are different.
00:21:19
Speaker
Right. And that's the part where like I've had friends who are very well-meaning, who have typical children, who will say like, oh, no, don't worry about it. My daughter does that too. Oh, my son does that all the time.
00:21:29
Speaker
My teenager hasn't grown out of that. And it's like, yes, but if my child continues, then yes, the dozen therapists descend, right? Like we were talking before that there's a huge response to it. yeah They don't just get two right you know, follow that path like someone else, because someone's going to intervene at some point and I'm not going to have control over that.
00:21:52
Speaker
So maybe that takes us back also to what is neuroaffirming parenting, right? It's like, maybe it's sort of defense, right? It's like keeping people away and just letting our children be who they are.
00:22:05
Speaker
And yeah. And then also in your own mind, not always worrying about the consequences. um I have, I think, even through just like the system or the voices that just come at you in our culture, pushed my children further than they should be developmentally because I worry like, oh are you going to get stuck?
00:22:25
Speaker
Is that the end of the road? Like, is there more for you? Like, because if there's not, then things are going to be a lot harder. yeah People are going to treat you differently.
00:22:37
Speaker
um And again, this could all be trauma response. I don't know if what I'm saying sounds normal. It sounds totally, it sounds you. And that's the the other part of this is we're all individuals with different lived experience bringing that to the table in our parenting.
00:22:49
Speaker
So, and I think what I'm hearing also is like that, that having to be on the defensive piece, I think part of that is protecting our kids from a society that literally does not cater to them or seemingly care about.
00:23:04
Speaker
ye And I totally see you in that. So true. Well, and to comment kind of on what you said, it's not, I don't find it just society. Like one of the things that I learned with my son along the way after putting him in a school program in the beginning that was like not perfect, but I say passable, which may or may not be true, was I'm like, my job is to keep people out of your way.
00:23:30
Speaker
he's he's He's a PDA profile. The only way he acquires skills is when it is his idea and he is interested in it. And a lot of the interventions were just shutting him down.
00:23:41
Speaker
And so a lot of times I'm like, my job is to like keep people out of your way. like It's hard when you're not there all day. Oh, yeah. Right. Like, David, you were saying you have your detective badge on from the very beginning of the day, but your evidence isn't complete.
00:23:55
Speaker
You don't know. Right. Like once they're out of the house or even in a half hour therapy session, like you're just not there. um This morning, dropping my daughter off, she's having a very independent morning. So lovely. And she goes to put her backpack on and she's about to get it. And it takes time. You have to give space. We have, you know, we talk about like a 10 second rule of like, you don't interrupt, just like let her have her moment um and see where it goes. And you'll know if she's on the path or if she needs to be redirected. And she was trying to get her backpack on. And I know that she would have gotten it, but someone intervened.
00:24:28
Speaker
and put it on, and she got mad and pushed them away. Of course she did, but it's problem that she pushed. But I say it's a problem that you tried to put her backpack on her. You know, it came from a good place.
00:24:40
Speaker
Yeah. well and and And we have even done that to our own kids at times. So, like it's not like, it's not like we're, like, big, like, oh, therapist, how could you? And she's like, oh.
00:24:52
Speaker
You know, hold on. Like, I've been here before and I know that she's on the right path. So so pump just pump the brakes. They need a little time. And i think I think this goes without saying, and like, my I'm sure that my lived experience, especially dealing with educators, is very different simply because i am a straight white man.
00:25:18
Speaker
Oh, totally. It's totally different.
00:25:23
Speaker
knowledgeable or educated in terms of the field or have the you know but because of where just because of my my birth status and where i sit in in classical society cast structure like i am sure that i am most well listened to by educators in this room and I just want to be the one to point out that that's wild. ah unfortunate like like i kind of like it's not It's not that challenging for me to have my have the people who work with my son kind of get out of his way, like you say.
00:25:57
Speaker
think because most people, they're scared of me. Most are funny. ed and like I don't mind that. So it's honestly like you almost like you, I have like a persona when I'm walking to a room, like, okay, my advocacy persona, and here we go. Like, I'm going to make sure that my child is, first of all, that they follow her lead and that they meet them where they're at. yeah I don't need her to be, especially like, I don't know if you all have experience with IEPs.
00:26:26
Speaker
Yeah. Yeah. The IEP meeting is like, honestly, one of the more frustrating experiences as a neuroaffirming parent. Cause you're like, whoa, whoa, whoa.
00:26:38
Speaker
Like, let's take a step back. Like my child is a human being. They're not like a, metric, you know, like we're just like reducing them to these goals that are for what, for like these goals.
00:26:50
Speaker
totally neuro-normative societal expectations. And like, anyways, i i started to get like pretty intense in those meetings. I'm like, wait, hold oh Oh yeah, no. Yeah. IEP and IEP p
Navigating Educational Systems with Neurodivergent Children
00:27:01
Speaker
goals right down to it. I've gotten to a point where i won't even use the word progress anymore with my kid because it reminds me so much of working toward IEP goals. And I'm like, nope, you're entitled to development and growth. Like that's how we talk about it.
00:27:14
Speaker
ah But we struggled so much like toward the end when I was going through goals, i was like, This doesn't even make any like you're looking for proof that he understands concepts like but with like a PDA a kid, you can't you can't box them in.
00:27:28
Speaker
You just got to kind of invite them to the opportunity and take your notes as they go. but Like, can he count to 20? Probably. Is he going to do prove it to you by doing a connect the dots?
00:27:40
Speaker
No. The moving card is so interesting because i remember my daughter learned how she could do – we had the little like foam letters in the bathtub. but And before she went to preschool, she knew all her letters, which is like very, very cool. Like we'd quiz her in like a fun way, not like some weird whatever, but it was just like a fun, playful thing with our daughter in the bathtub.
00:27:59
Speaker
And so she goes to school and I'm like so proud. You know, I'm sending my three-year-old. She knows her letters. And it ends up in her IEP. And they're like well, yes, we just need to make sure she knows it. And then the year later, it shows up in her IEP again that she can recognize all of her letters. And I'm like, but she she can do this, right? Like the IEP p language would be that she mastered it.
00:28:17
Speaker
But I think I was just saying like, we know that she knows all of her letters. And they would say, yes, but we need her to be able to do it here. And I feel like that was a very triggering comment that at the moment at the time I didn't know, like guess not triggering, but loaded.
00:28:31
Speaker
At the time, I didn't fully understand what that meant. And I didn't know. Now, we don't have a PDA diagnosis, but i mean, it's written in the star. like she It's the most obvious thing in the whole world. Christy knows my daughter.
00:28:42
Speaker
She's a little adult. um And so ah but having to prove, right? And that's so hard. And then now we're not super in the ABA space. She started with ABA, um but that requires a lot of proving.
00:28:58
Speaker
Yeah. Right? And you put PDA and ABA together, and that just sounds like a... And I have, and I will say this, I have a ton of empathy for like the way the system is set up and why these goals are necessary. Like you need to be working towards something.
00:29:13
Speaker
and if a child doesn't have an advocate in their corner, like who knows what you're working toward, like those things. But I think the point of frustration for me is the way our system set up is it felt like the proof was the gatekeeper tim to more group instruction, more real education, more X, Y, z And I was sitting back and I'm like, I have a kid who likes to learn.
00:29:36
Speaker
I'm like, I have seen him connect dots between things. I'm like, you're cutting him off. from information and access and fun in a way, because you need him to sit and prove to you.
00:29:48
Speaker
And that's one of those things where there could be just a little bit more balance in the public school system between meeting those IEP goals and getting the access they need to just, what do you call it, Lelena?
00:30:00
Speaker
Incidental learning instruction. Yeah. like that would I feel like that would make a world of difference. ah wait You hit on, you hit on i think, like my biggest pet peeve in ah and is that like you that that ah like gatekeeping. gatekeeping.
00:30:16
Speaker
and yeah the system is gatekeeping like, like from, from jump, like our system, and like, like I think our system is like, I, I, I have a ton of empathy for how our system is on is like the, the issues within and there's huge challenges, but to me, it starts right at the very beginning. And like, I'm more of, I'm, I'm really only versed in how California works, but like,
00:30:43
Speaker
you know like In the regional center system, when we have like we have consumer services coordinators, like like the they are trained, like i know how like because I was on the board, like I know how we train, or at least how we did train our CSEs. is we are thankfully they were They were thankfully trying to trying to redo that, but they are designed to be gatekeepers.
00:31:03
Speaker
like but was like they they start Like they start at no and you have to prove that you that you have to that you have to get to a yes. And i'm goingnna that that is before I even get into the wait times and the wait lists that people have to sit on. And while you're on those, you're still sitting in a no and you're not receiving services until they can come evaluate your kid on their on on their schedule.
00:31:30
Speaker
And while while all of the scientific evidence has proven, especially when we're talking about early intervention, that the sooner kids start receiving services, the the the better their outcomes are going to be. But our system is set up to be to be to be gatekeeping. And yeah, as you can tell, I'm like flustered even just talking about it because like it makes me upset.
00:31:54
Speaker
Well, what's so funny is we went through the regional center for diagnosis. so We were in early intervention, happened just as COVID lockdown was starting. And I don't know how we got in and how everything moved so fast, but my son turned three, like three or four months later, we were a little late.
00:32:09
Speaker
And I remember talking to the woman at the regional center. First off, they just cut of all the services off. And I was like, oh, wait a second, what's going on And I remember talking to her. When they turned three and they just cut... cut everything off no matter no matter if you' you've transferred into the la usd system or not no no phone call no check-in or nothing and so i called her back and i was like she was just like so so mean she was like are you telling me that you're you think your child is autistic or has a blah blah and i was like what is going on like do the evaluation please well actually that is a good segue to what i was going to say which is that the assessments themselves it's like oh they're terrible disabled your child is
00:32:50
Speaker
in order to receive services or to be placed within a school system that actually gives them or is supposed to give them the support that they have a right to. Yeah. You know, like,
00:33:01
Speaker
Education is a right. It's not something that should be that that should be gatekept. yeah So even like filling out those assessments and it's like, it doesn't like a child have a sense of humor. And I'm like, are you freaking kidding me? Like these questions are awful.
00:33:17
Speaker
They're so deficit based. And you want me to prove to you how in your, how she doesn't fit into your neuronal normative standards for her to have access to something that she has a right to, you know, that's a problem also.
00:33:32
Speaker
bugs me so much about like the standardized testing piece is there's a lot of things that are better for our kids that are better for all kids and that's what bugs me about kind of how at least in states that have like really big self-contained systems in terms of classrooms like that's what's annoying to me I'm like this isn't universal design which is supposed to be a thing but like what works for my kid will work for all of these kids too. And I bet you the ones who are flying under the radar will do better it's right if you can figure this out. So yeah, totally agree. And the assessments are awful. i had to fill out one recently and it's just like, worth like the person who gave it to me was like, I apologize. It's for insurance.
00:34:17
Speaker
but know Just do what you got to do. i think and i that's like what you just said there. Like it's so, I love to hear that from a from someone who's delivering services.
00:34:32
Speaker
Like it's such a relief when, yes you know, psychologists, SLP, whatever, they're like, I understand what I'm doing might be a little ridiculous, but this is part of the legality and the process and the legal process of going through, of going through this, ah that like, like always sets me at ease because it's like, you understand what you have to do, but you also understand actually where we are.
00:34:59
Speaker
um, I wanted like I like Elena, when you were talking about how like the IEP meetings for you can sometimes be really challenging. I'm wondering if that's the team.
00:35:10
Speaker
I'm like, like i like i like i don't I know nothing about your IEP team or experience, but I've now had my son at three different schools, um even though he's only six.
00:35:23
Speaker
ah And so we've had three different IEP teams. And let me tell you that like the experience is vastly different depending on who is supporting you.
00:35:36
Speaker
And, and, and I just, I just wanted to bring that up because I have had really challenging IEP teams where like, I have that exact same experience that, you know, like we're almost like I have to like,
00:35:49
Speaker
take a breath because I am like offended by some of the things that are that are being said and happening. ah Fortunately, I have a great one now and my our experience is great. And i actually I've actually enjoyed our recent IEP meetings. ah ah No, you didn't just say that.
00:36:05
Speaker
never and you swear, I like my son's IEP team. And now that you mentioned it, I'm not really sure we like talked about goals once.
00:36:18
Speaker
Maybe that's why. Maybe that's why it was good. And it was Layla. I don't think I said anything about IEP. p ah you You're right. I'm sorry. I meant to say, I meant to say, ah but ah i like Alayna and Layla. You know, that's close. Like, like, I don't, I don't, I don't, the that the names, I will probably mix up your names because they kind of sound similar and probably sit in the same place in my brain.
00:36:42
Speaker
Sorry.
Practices and Skills in Neuroaffirming Parenting
00:36:43
Speaker
So when it comes to neuroaffirming parenting, maybe like just everybody sort of talk about high level, what it looks like in your house. And then i would love to hear what it's changed about the way you see yourself.
00:36:55
Speaker
Cause I think that's always a good question. so yeah. Who wants to kick us off? Can you say that again? I'm sorry. um What, what neuroaffirming looks like in your house and then what, how it's changed kind of the way you see yourself.
00:37:09
Speaker
Who wants to go first?
00:37:12
Speaker
I can go. ah Go for it. Okay. um so and obviously, as with everything, like nothing is a monolith, right? So in each household with each child, things are going to be different.
00:37:28
Speaker
So I'm going to speak to my own personal experience with my daughter, potentially, but daughter, definitely my eldest. um There's a lot of following her lead. I have this formula in my head and it is have high expectations of her, presume competence, but dial up and dial down demands according to her day.
00:37:50
Speaker
So whatever I can sense now, you know i put on my detective cap, what her spoons are looking like for that day and how I can help recharge them. And some days it's literally like, okay, we're gonna have a very chill day today. We're not gonna leave the house.
00:38:04
Speaker
We're gonna just relax. um So I really try to do my best to follow her lead. Other days I'm like, okay, maybe we can do an adventure. you know Maybe we'll go out into the world. We actually don't do ah therapy.
00:38:18
Speaker
Maybe that's a different take on life, but we don't. We do speech therapy. We do um one 50-minute session biweekly. We did do OT and PT for the first couple years of her life.
00:38:31
Speaker
um But I firmly believe that a lot of that is parent coaching and that we can – we're with them 90% of the time so we can apply those principles at home. um So I just started to get really obsessed with researching like gestalt language processing and different, you know, like her proprioceptive input that she needs, vestibular input um and just like her whole sensory system.
00:38:55
Speaker
And so I just like do that at home and I kind of do it myself. I'm also now homeschooling. So that's a new adventure. Hey, we can talk about that. Yeah. But yeah, I would say definitely following her lead, um having high expectations but reducing demands, presuming competence, yeah and helping her to feel safe in this world, really.
00:39:15
Speaker
for sure. um And just as sort of level of playing field, i my son does do therapy, but I am a no therapy is better than bad therapy person. um So we spent, eight it's taken us two years post-school to get our like therapy regimen to the, to the right place. Yeah. And therapy is fantastic when you have the right team.
00:39:38
Speaker
Yeah. Yeah. um And it it takes it takes time to find people who align. And a lot of it, in my opinion, boils down to luck, to be we completely transparent.
00:39:50
Speaker
ah Yeah. So that's amazing. David, what about you A lot of the same things that Layla talks about. Like, I really – I try to, like – I do think it's really important to, as as as important as it is to check in, to be aware of like what the what spoons my son is working with today.
00:40:11
Speaker
It's really important for me to be aware of the spoons I am working with. ah like i and And in a lot of ways, I feel like it's not more important, but it's something I have to like I'm naturally very in tuned to i like to other people um and to like their emotions. and their like like it's just that's i' like that's That's also a part of my If we want to cringe,
00:40:39
Speaker
like like that's my superpower i like i don't like it when people see ah But like, that's what I'm that's what I'm good at. But i'm I also I don't like I don't often like my if that my special like my special skill is also like masking like I'm I'm incredibly I'm like I'm incredibly adapt at masking and to feed my ADHD side, the realization that I had this week is that I don't feel awkward in social situation, new social situations, because I'm awkward.
00:41:10
Speaker
I feel awkward in new social situations until I know what level of mask I need to have on. As soon as I, and I've noticed as soon as I, as soon as I figure out what, like what level of mask I need to be appropriate in that situation, I feel comfortable.
00:41:25
Speaker
And I don't get there. I don't get to that comfort until I get there. But so checking in with myself is really important. Like, how am I doing today? And if my if i am feeling dysregulated, like how and like, how can I help that so I can be more present and be more patient with my son? And if there's nothing I can do, like, at least I'm aware of it and I can check in with myself. Like, is what is what's bothering me?
00:41:50
Speaker
me or is what's bothering me like or or is like he genuinely doing something that he shouldn't be doing or is it just bothering me because I am short today? on Yeah.
00:42:01
Speaker
For me, that's the biggest thing is is checking in with myself. But really, like it's a lot of him leading. And like if as long as like his like safety is not in question or like he's not being destructive,
00:42:20
Speaker
uh like it's very much like uh like like it's a like we're very much like in an asher-led household because like he is so like he does he does present with that like pda profile like i almost like uh have y'all seen the christopher nolan movie inception oh yes oh yes i feel like i not i feel like i feel like we I feel like I live that a lot of times because like you know like telling him to like like even if I wanted to tell him to do something, like i know that's not an effective way
00:42:57
Speaker
You have to architect it. Yeah. Like I have to – like that's – like an Inception like lives rent-free in my brain because like a lot of times like i spend i so like i spend time being like, yeah, like how can I convince him that this is his idea yes to do to do something.
00:43:15
Speaker
Sometimes with my son, I'm like years of working in advertising with men where everything has to be the idea has like primed to me for this moment. Yes. Oh, yes. one of my favorite things is ah the unintentional things, like the unintentional educational experiences or life experiences that we carried with us before we became parents that like were so useful they are so useful that you're like, wow, that's cool.
00:43:47
Speaker
Yeah. So true. my My example of that is I think everyone should take an improv class. Oh. Especially if you're a parent. That's actually a good idea. like and it should be And it should be like a requirement for neurotypical parents because i you're taught how to – like one of the biggest things in improv is active listening.
00:44:08
Speaker
Oh. And, you know, and and and one of the things that like is taught is that like, like, yes, you know, one of the things hear what people say, but how did they say it? What is their body language?
00:44:20
Speaker
And because I ah was a improv cult member for a little while, it's definitely a cult. Don't let anyone convince you otherwise. are You couldn't invite us into your cult. so well i i had I kind of left.
00:44:34
Speaker
ah My, the theater, my cult, my specific cult theater shut down ah during COVID, like just before COVID. And, you know, once COVID happened, like everyone kind of, I also like had a new baby. And so like, I don't really have time to, ah you know, go, go perform, go, go perform random comedy 9pm on a Thursday now So I've kind of stepped away.
00:44:58
Speaker
ah But, you know, find your own cult. ah Just don't get too deep on it. ah yeah like yeah like when your When your child doesn't talk, like having that experience ah experience of taking in everything that they're putting out, not just their verbal you know output was something that was invaluable that I like i was like, wow, I have a really valuable skill that I had no idea was living inside me.
00:45:24
Speaker
Yeah. That's actually really cool. I never thought about that. um I'm listening to the 48 Human Nature. And there are entire chapters dedicated. Robert Greene is like the wildest ride if you've ever read any of his books.
00:45:38
Speaker
There's an entire chapter dedicated to learning to read people's like nonverbal cues. And I'm like listening to this and I'm like, this sounds exhausting. write these chats I do this all the time. and This is exhausting. I only want to do this with people I like. Okay.
00:45:56
Speaker
What about you, Elena? um I mean, I think in our house, i things were very different, right? When you have one child and that's – she drove the household it was we're eating at places that you like that you'll eat the food we are playing at places where you can play because i want you to be happy um when we had our beautiful lovely gorgeous son um and now we're two kids uh just everything shifted like for example to get um hope through her morning routine i would sing we had a song for everything we still sing a lot
00:46:32
Speaker
But it was, you know, a song for like walking down the hallway, like literally a song for everything. And my son, as an infant. hated it.
00:46:42
Speaker
He could not stand songs, like could not stand me singing, didn't want to hear anyone else sing. And now and we have no strategies, right? Like that was like my go-to with my daughter.
00:46:55
Speaker
So I think in our house, and I love David, how you spoke to like knowing where you are at also, because I think um I don't always check in with myself until I recognize something's off.
00:47:07
Speaker
um But otherwise I just assume like, I'm i'm awesome. i'm Like, not really. well I'm not all there today. um but that'll take me a minute to get to, right? um And so it's almost like sometimes reading who needs more at what moment um and also being very careful full of our language. I'm very sensitive to these stories that come out about siblings and having any level of resentment. I absolutely refuse to have that. So like there's language that I correct in my household when other adults are around of like, no, we don't get to say,
00:47:38
Speaker
Henry, you don't get to do X because hope is feeling a certain way, right? we don't Because, wow, if we keep saying you can't because of her or telling her she can't because of him, I'm afraid that we're going to build that resentment in time. yeah um And so I think a lot of things go on set. Like I think I've even mastered my own um communicating without words because I don't always trust the words that are coming out of my mouth.
00:48:04
Speaker
But I do trust the body language, the safety, the Hope thrives on like connecting. Like absolutely. Like if she's any sort of like tizzy, if you just like grab her and can like look at her, she's safe. She's calm. The nervous system comes right down. um It's magic.
00:48:21
Speaker
Yeah. She regulates so quickly. She co-regulates. She's a co-regulator. yeah That's huge. yeah so It's very convenient, right? As long as like the right person's around for that. As long as you can be regulated enough to be the regulation.
00:48:34
Speaker
oh Otherwise we're a mess. We're a mess. so um So yeah. So I think a lot of what we do in our house is unintentional um and hopefully working, but safe. But then because there's this um unintentional approach and following intuition,
00:48:51
Speaker
I find that I often have trouble communicating that with outside teams. So like it can be hard to babysitter, right? It can be hard to send her off to school. They'll ask, well, what do you do in your house when x y Z? And I say, but you're asking me about a situation that I didn't see. I don't know if someone across the room made a sound that she's sensitive to.
00:49:10
Speaker
She has phobias that like are very shocking. Like she's scared of a hair. So the other day we're driving home and it was just me and her in the car and she just starts screaming. She's like wiggling out of her seatbelt. Like she's a mess.
00:49:23
Speaker
And I'm like, i have to figure this out. So I pull over and I look back and there was one stray hair on the buckle of her seatbelt. I got that off and then she was fine. She sat back and we kept on driving and then got flat tire. So that was fun.
00:49:35
Speaker
But i remember like those but um these are little things where like I can't like, what do I say? They're in a meeting. We're in a meeting, say an IEP meeting. and they'll say, well, what are your strategies at home?
00:49:48
Speaker
to do, you know, blah, blah. And I'll say, well, did you check to see if there's any stray hairs? Was the person she pushed in front of her in line, was there a hair on their back? Like, but, and, you know, and these ideas don't always come to me because it's just, you know, your child so well.
00:50:04
Speaker
So I look at the homeschooling. sometimes like, and I do have you guys on like a bit of a pedestal, which I know is unfair. We're not supposed to do that to each other, but that beauty of like having that opportunity to just be able to act, you know, like from your gut, um, yeah is something I wish that I had, um, during the day. And I think it's really beautiful that you guys made that decision. And I know maybe in some cases the decisions were made for you.
00:50:31
Speaker
And so it's not that, yeah, it's not that good. Um, i know I have two questions about Hope. yes said You said two things that I'm like, oh, is she – do you know she's hyperlexic? You said she recognized letters at a really young age.
00:50:45
Speaker
So my son 100% for sure is. He and I recognized it immediately. No one's ever said that for Hope. um But again, the interesting thing about her, so she's nine years old. She reads.
00:50:56
Speaker
She's not always intelligible, but she reads. um and um but like decoding is hard she's more of site reader flashcards all day like that's typical usually of hyperlexic readers because the comprehension piece is a different journey.
00:51:12
Speaker
And what's sad is no one, I don't, and I'm not going to say nobody because I hope that somebody is listening to this right now saying, like raising their hand, like, no, me, I'm the person you're looking for. if you are, please reach out. But um i when it comes to having an intellectual disability, the bar is just so low that the fact that she can read is shocking.
00:51:34
Speaker
To be um me, it's like it's a sense of pride. It means I feel like I've given her a safety tool to go out into the world. um And so not just for enrichment and entertainment, but also safety.
00:51:45
Speaker
um And because nine year olds are going into chapter books and she's not there, i think it's hard sometimes for people to see that there might be something really magical in there.
00:51:59
Speaker
that just again looks different um support could unlock something oh yeah for her right oh yeah so we use um so for school i pushed really hard they were doing a lot of um like one-on-one i got partner work i guess like the peers the classmates um like interviewing for stories and hope wasn't going to be doing that or she was going to have someone sort of like shadowing it and trying to figure out what she wanted to say. And so we pushed really hard for having a computer in the room where she could with like um predictive text, you know, and like maybe she'll land on something or use her AAC, which is like she hates it. So we have like a really difficult relationship with AAC. My daughter does too.
00:52:41
Speaker
Yeah. I'm like, come on. It was a lot. That's for you. Yeah. I mean, i like for my daughter, it's it's a demand. She's like, this is you all are forcing this on me. i'm on it And I want to play and you guys are trying to get me and I don't want to do it.
00:52:58
Speaker
So I'm just like, I'm like, it's there. you want it, go for Have you seen ah meaningful speeches course on AAC for gestalt language processing?
00:53:09
Speaker
I have seen it. My one biggest takeaway that was amazing for us was put all their gestalts in it. Yeah. And I put like the crazy, like he has quotes from like Eloise movies. And so nice honey so we don't, we don't use it consistently enough for him to get into it, but he did last summer. He, it helped with visuals because when I brought him home from school, if you put up a visual, he was like, he won't even look at them.
00:53:33
Speaker
He was so traumatized from school. So at least that got us like over that hump. Like, no, this can be, this can be fun. Like it doesn't have to be like, it mean it's time to work or that I'm going to hold something over your head.
00:53:45
Speaker
So yeah. What's cool about AAC as a communicative device is that it's visual, auditory, and, you know, you can read it. Yeah. So it's three of those communicative modalities that maybe there's a preference for one over the other. And we as a society often prioritize mouth speech, but there are other just as valid forms of communication. Yeah.
00:54:09
Speaker
you know And so that's what's nice about AAC. I wish my daughter, but it's not her it's not her journey and that's okay. She prefers gestures yeah and singing. sings all day long. She prefers to hand lead you. And so I honor that. you know yeah Exactly. Oh, that's really cool.
00:54:24
Speaker
um And Elena, I kind of wanted to layer on something that you said. um For a while, i felt the same way you did about the way that you do about Hope about Porter when it comes to like leading with intuition and bringing other like kids into the mix via Diverge. And I don't like run Diverge all the time. I have but usually have people there, but when something comes up, I'll come watch.
00:54:49
Speaker
The biggest thing I've learned is yes, it's intuition, but what you're teaching the people around you is a posture. It's not necessarily like they don't necessarily have to be crazy intuitive, but if they're not able to sort of come in with the same vibe and demeanor, like it did, it's not the same environment.
00:55:13
Speaker
So like, even as something as simple as like, um, i ah when a kid like starts getting little bit more hyper than they normally will, a lot of times I'll just sit down on the floor.
00:55:24
Speaker
and like engage in something like way before they're like, you know, so overstimulated and watching kids like demeanors, like sort of come down because the adults around them have like sat down and chilled out versus adults starting to get like really nervous because they think something's about to happen. Like it's, to me, it's all like, I don't know if posture is the right word, but it's all like an energy. Yeah. That's like not, yes, it's great if you have like super sleuth intuition, but at the end of the day, if you can just know to like,
00:55:55
Speaker
calm yourself and back down, a lot of times these kids will follow suit. And otherwise they just need to go outside. Yeah, movement is great. can We also, we we like, like as a society, we stigmatize and diminish, you know, people's emotions and people's feelings.
00:56:16
Speaker
and and it starts And it starts from a very, it starts it starts at a very young
Communication Styles and Emotional Validation
00:56:20
Speaker
age. And like some of the things that like I like i found most, like it was ah bring your kid to school day last week or two weeks ago.
00:56:29
Speaker
And yeah, one of my son's classmates mom had already left and she was beside herself sad like like on like on the ground crying because because her mom left like yeah and and and like I've known her she's been in and out of like her her and my son have been in out of classmates for a couple of years so i like I know her relatively well and like I just sat down with her and like we started talking about it and like and like like just started talking about like, like she said that her mom, that her mom left. And that's cool.
00:57:05
Speaker
Like, but like a means it to bes head that means that she, she really loves her mom so much that it hurts her when her mom leaves. And that's really beautiful thing. And that it's it's it's cool to be sad when your mom leaves and be and be sad, but know that you're going see your mom this afternoon. Yeah. And that she loves you and she's going to be right there. And like we kind of just sat and she sniffled for a little while and eventually i'd eventually pulled it together because like...
00:57:34
Speaker
Like I think because like like she felt seen, I think. i hope yes and I hope. Yes. I don't care what anyone says. i have never seen a kid not move through something more quickly with validation regardless of neurotype.
00:57:47
Speaker
Like regardless of neurotype. I remember talking to Porter at like three years old. I'm like, no, we can't do that right now. But I get that it's really sad. And he was over it like so quick. Yeah. Whereas in other situations, I watch people and they're like, oh my God. he's gonna you know like they just freak out because of the freak out or tell them not to worry about it and like this and this little girl like she's very verbal uh and so like i was like and for me like this was like the easiest the easiest diffusion in the world because i'm like um because ro like with my son like i just i'm just like i'm just like closing my eyes and swinging i'm like yeah i'll do the same thing i'll like i'll but i'll i'llll i'll try i want to make i want to make his feelings i want i want him to feel seen in his feelings but i'm like
00:58:31
Speaker
I've only got like a 75, I'm only 75% sure I know what why you're feeling this way right now, but I'm going to take a huck at it. and And sometimes he looks at me like I'm crazy. And I was like, that's not it.
00:58:42
Speaker
That's not it. And don't you feel bad? i have Don't you feel bad or silly sometimes trying to label it? And then like, eventually, you know, you got it wrong. You're just like, oops. Oops. but like like what else But also like when I label it it it like ah in like and immediately like you feel like yeah was like a pressure cooker, like when the valve, like you feel like just a little bit of the steam come out and it's like, I got it.
00:59:05
Speaker
I got it right. We did it. When they're non-speaking, you just- It's so magical when you do figure it out. Yeah, and that is a magic moment. That is the release of steam. That is so cool. Yeah.
00:59:16
Speaker
And it's funny you said that about a more verbal kid because I have a friend whose son loves to talk about his feelings. And I'm like, can you just please send him over? Like, because i got ah got a whole dictionary for that. Like, I'm good. Let's do this.
00:59:30
Speaker
Yes, it's really funny. what of One of our good friends, ah she is and SLP who specializes in working with autistic kids. ah And her her son is super verbal.
00:59:41
Speaker
ah Yeah. And so like a lot, like we often joke that like we should like child swap sometimes because I was like, oh, yes, like just give me the verbal child. like Like I will like let me talk through it all. And I was like, you can play the guessing game with my son for a little bit. and being in Yeah. like lead into our strengths.
01:00:03
Speaker
Yeah, no, totally. Absolutely. So cool. um So we're getting like a little closer time. Do we want to talk about GLP real quick? Because you have some, you're going to need another hour. We could do that too.
01:00:18
Speaker
But I'm very, I think I'm equally passionate about it because it is unlocked so much for my kid. yeah um So yeah, why don't you talk at leilla talk about your experience with it and we'll just roll from there. ah With Gestalt language processing? Yeah. out Yeah, sure. um Okay. Well, my daughter, um when she used mouth speech, it was primarily in song um from about like two and a half.
01:00:43
Speaker
And she would sing nursery rhymes and not all not always intelligible, but because they were so commonly known, we understood that she was trying to, you know, sing an approximation of Twinkle, Twinkle Little Star, for example.
01:00:56
Speaker
um And so I was like maybe she needs some speech support because her neurotypical peers at the time I actually didn't know she was autistic and I had no idea what Gestalt language processing was i was like they're like answering yes and no and there's like a little bit more of back-and-forth conversation and she seems to just be singing all the time so um at the time I was living in Washington and I took her to this group where um And they were like, oh, like within seconds, they're like, she's a Gestalt language processor. And I like, what's that?
01:01:28
Speaker
And so they explained it to me. And then, yeah, we embarked upon a journey of understanding detective, doing detective work and trying to understand what she was communicating when she was communicating um with mouth speech. But she's also a Gestalt cognitive processor.
01:01:44
Speaker
Yes. So she thinks in Gestalt as well, which is really, really cool. Yeah. How do you – what does that look like, like to know that she's thinking? Yeah.
01:01:55
Speaker
So a lot of the time she will, for example, act out a scene from a show that she um but she loves. That's called echopraxia.
01:02:09
Speaker
But it will apply to the context of what she's trying to communicate. okay Oh, interesting. yeah Yeah. That's one way it it manifests. Other people will like literally – you know, um like compartmentalize and categorize the the entire world into groupings.
01:02:27
Speaker
um And she can't, I can't see that yet, but I think she probably does have a degree of that going on in her beautiful brain. Yeah. So like that's really interesting that say that. I've heard of Gasol cognitive processing. I find it's really hard to find anything on it.
01:02:43
Speaker
Like everybody seems to like know it exists, but it's hard. I haven't found a body of work on it yet. if you know of one, let me know. ah But my son will do that. he He acts out a lot of things.
01:02:55
Speaker
I would say rarely is he... like communicating something with it, like with Gestalt when he's communicating, you kind of know it, but like sometimes he really is truly just like acting things out.
01:03:09
Speaker
um But it's always very creative and very interesting. Like he was into the movie. What was it? Soul for a little while. And you know, this scene where the cat like accidentally buzzes the guy's head.
01:03:20
Speaker
so we, this is the dumbest story. We had a milk, we had a milk frother. And it made the buzzing sound. And one day I watch him like get it and he's like running around with it and he goes and he stacks up a bunch of books like the cat does in the movie and like tries to stand on top of him and do the thing and then like follow. You're so cute.
01:03:38
Speaker
That's so cool. That's so cool. Yep. This is Porter. yeah can't get to tell you your name or abcs but he's got this online he's so cool no it's so funny but it's funny he does he thinks like that and the people who get really far with him like acknowledge that they're like he needs to see the full picture of something before he's gonna like really engage with it yes my son is exactly be the same way yeah He needs to, i'm and i'm the same way. So it's, it's funny. Like every time, every, like whenever I find myself getting frustrated by like one of my, one of my son's like mindsets or thought processes, processes, I'm always, I always spend like an extra three seconds and I'm like,
01:04:24
Speaker
because yes I remember one, it wasn't an IEP meeting, but it was the first time ah someone kind of acknowledged that like ABA was not going to work for my son in its traditional format, which to be you know transparent, I didn't fully know what the program I was sending him into.
01:04:41
Speaker
but it was a meeting. And I remember the teachers like getting together. They're like trying to politely tell me like he's in the wrong program, but I was so new to everything. I didn't know what they were saying. And they basically were like, so he's great with routine, but we don't know how to teach him anything. And i was like, I didn't understand what that meant. I got them to explain a little more. And then without like missing a beat, was like, he has no idea why you're asking him to do that.
01:05:05
Speaker
Like it just – Yeah, like give a context. It's an isolated skill. There's no context. Like he doesn't understand why you want him to do that. And they just looked at like I had four heads. They were like, what? I was like, I know he's three, but like he needs to know – like it has to have context.
01:05:19
Speaker
Do you think – you just said that phrase and because I know the same district that you Yeah. So when I – things like that. I struggle because when I say, again, the low bar with IDD – um when I say she doesn't understand the purpose of you saying that he doesn't understand why you're asking that is because of the the way his brain is working and processing it, it's not lesser. It's not that he doesn't get it.
01:05:46
Speaker
It's that it's nonsensical, right? Yeah. And I think when people here doesn't understand, there's an immediate like switch that goes off of like, oh, we need to dumb this down. We need to simplify Yes. That's not it at all.
01:06:01
Speaker
And what's interesting, because I was about to point to homeschooling, and don't know if you remember this, but one of the first things I learned when we were homeschooling is, you know, I did the classic thing where i was like, oh, we got to do schoolwork at home.
01:06:13
Speaker
um And it was in part because I just didn't want to like lose that because they had spent so much, you know, time orienting him to like a worksheet or whatever. um And i remember getting to a point where he like didn't want to do certain things anymore. And I like couldn't figure it out. And then I ended up upping the ante And like he still has all of his like expressive delays, but he would engage with addition far more quickly than he would with like, oh, let's count the like the cows and farm animals again or whatever.
01:06:39
Speaker
And it was like the temptation to your point is always to go backwards. And I think that's kind of what ABA teaches is break it down further. And what he needs to see is the goal. and he'll like ah move himself toward it.
01:06:52
Speaker
um Because i i think there's more going on in there than people. like yeah It's also the presumption of competence piece, right? Absolutely. And this is what ends up happening in our school systems and actually why I decided to homeschool my daughter.
01:07:07
Speaker
She wasn't demonstrating on demand or on command yeah these abilities that she had. And I was like, quite frankly, I think she's bored. She's been doing this years.
01:07:20
Speaker
And yeah just because she's not doing it, you know, attending to the adult in their words and their terms, um But her teacher was like, we just have to teach her how she learns.
01:07:31
Speaker
But systemically, you can't can't do that for another child. They don't have the resources, right? No. Back to that whole empathy piece. But one thing I wanted to say really quickly about your son with the cat in the books yeah is that Geshall language processors often have episodic memory.
01:07:47
Speaker
Absolutely. And that is how they tie their gestalts to a meaningful experience. So maybe it wasn't communicative to us as communicative partners. Yeah. He was communicating something for himself.
01:08:02
Speaker
and Absolutely. Whether it was joy, whether it was, hey, this is one of my favorite scenes I want to show you. Creativity. Yeah, exactly. Creativity, right? So like it's all communication always. maybe like And that's why I hate the term functional communication because it's functional to who?
01:08:16
Speaker
To us. As the communicative partner, like this is completely functional. Like he's doing something incredibly cool. Right. Well, and that's the thing, too. I think watching my daughter, who's an analytic language processor, she talks about what she wants to talk about.
01:08:31
Speaker
Like, and I think that she's two. She woke up this morning asking me about bees because she got scared yesterday of some bees. And it's like, you picked that subject. There's technically no nothing wrong.
01:08:44
Speaker
and Well, it is functional, but like there's nothing functional ah about that. Meaning you're not encountering bees at the moment. You're not encountering bees at the moment. You're not <unk> you're not running away from anything. I was like, you're actually processing your feelings, which is another thing. But like you picked that.
01:08:59
Speaker
You chose that. Like that's developmentally like how you're choosing to build language or this next section of language. And i was like, so there's this piece for me with like our kids where it's like developmentally, like you need to be allowed to build language however you build it.
01:09:14
Speaker
And if I want milk is not in the cards right now because that's not what you're feeling, like, yeah, it makes my life more difficult. But why don't you keep working on like your scripts or whatever is making sense to you?
01:09:25
Speaker
when i think I think that like one one of the things that I know does not get talked enough about, I think sometimes like we as parents get a lot of credit, which I love. I'm a big fan of of praise.
01:09:38
Speaker
Yeah. You're very self-aware. I like it. I did that ah did not always used to be so. i think my I thank my son a lot for that.
01:09:48
Speaker
Yeah. he's He's a great little mirror. ah But I think we forget, especially, and I i think this is like, especially with non-speaking and also gestalt processors and gestalt communicators, ah just how patient our kids are.
01:10:04
Speaker
So patient. i really i like I really try and center that of like, You know, how how this six-year-old has been trying to communicate this one very simple concept to me that he knows in his brain what it is. And he is projecting it through his mouth and in his body. And I just can't figure out what it is. But he is, I call it staying in the pocket, ah ah you know, like, as you know, as opposed to like pulling the ripcord and just like flying off.
01:10:36
Speaker
um Like the fact that like he's willing to like stay in the pocket and be like, no, dad, you're not getting it right. It's this. No, dad, you're not getting it right. It's this. Like we don't give them enough credit for the patience that they have for us. So true.
01:10:53
Speaker
yeah Those communication breakdowns too, like that that must be so frustrating. like Oh, so far. Yeah. Like your basic needs, you can't communicate to the person who's supposed to be providing that to you.
01:11:05
Speaker
Yeah. And- We forgive so quickly. Yeah, they do. Well, and that goes back to your point, Leila, about honoring all communication, which is one of the things that frustrates me so much sometimes about certain spaces is it's like this at the end of the day, this kid cannot use spoken word, cannot communicate with me the way I most easily understand communication. Like giving him the benefit of the doubt is my job.
01:11:34
Speaker
Like because at the end of the day, you don't know if it's been our, well, I mean, you do know, but like, if I'm asking for water, me demanding that you say it a certain way its just like, that's cruel.
01:11:45
Speaker
Like, like my, like if you pulled me over and asked for it, like I'm giving it to you. That's it. That's the end of the conversation. I can model and I can, you know, but it's one of those things I don't think people think about. And it's one of the things I think as they get older, I have a really um hard time with because it's like,
01:12:03
Speaker
you have to give them the benefit of the doubt because the deficit is as much on your part in some respects as it is on theirs. like and Oh my God, I can never, like, you hear the, like, oh, like, you know, like, make them use their signs or, like, make them ask for it. And I'm like, he asked for it.
01:12:20
Speaker
He communicated to me that he wanted water and I understood it. why why would i Why would I then be like, no, you have to communicate. Yes, you you communicated perfectly well so that I understood you, but I'm going to make you communicate in a different way to get it.
01:12:40
Speaker
What? Well, this is why, like when we listen to and center autistic adults, we learn that they are traumatized by these compliance-based approaches because it's like I was telling you and you just weren't listening.
01:12:53
Speaker
yeah I was showing you and that should have been honored. And to punish me, for something that I can't help. Like a lot of these individuals are dyspraxic and apraxic and have motor planning differences and to try and force them to do something that they literally cannot do.
01:13:12
Speaker
It's like, it's like It hollows them out. Like it, like, I feel like it like chips away at their soul.
01:13:24
Speaker
Oh, it totally does. they sa it Well, and there's so many stories at this point too. ah Jordan Zimmerman is a great one. for love i do I do. Can I can't, i can't remember his last name, but I'll link it in the show notes.
01:13:38
Speaker
um And then the on the board of the ICDL, i think his name is email and can't remember. Again, I'll link all these people, but they're all people who autistic people who didn't have a valid form of acu communication and until 15, like years old like a whole range.
01:13:54
Speaker
And the one thing Jordan and I do specifically say is they're like, no, I knew the whole time. Like the behavior was my frustration with being asked to do things that were super below grade level that I already knew how to do. And people just understood didn't understand.
01:14:09
Speaker
No, I cannot make myself point to that cart. Even when I try, sometimes I point to the wrong one. yeah ah And that, oh it's so frustrating to me that yeah all of the apraxia however motor planning in general is not a bigger part of the conversation in all spaces.
01:14:26
Speaker
yeah this where like This is where like speaking to Autism Awareness and Acceptance Month, everybody's like, we need acceptance. We need to move towards acceptance. And it's yes, and also still needs to be allowed. got of awareness.
01:14:40
Speaker
We can work on you. I actually love to be like, yeah, yeah, everybody knows everything about autism and now we're just accepting it. No, nobody knows anything. I think it's like a tandem conversation, right? Like if I'm a mom and I'm in it,
01:14:55
Speaker
I'm not going to show up in April and talk about how difficult it is to raise my autistic kid and center my voice in the conversation. There's enough of that. There's plenty of it. I accept this. It is all about you and what you are absolutely fully capable of.
01:15:08
Speaker
But then there's other spaces to your point where it's like... ah RFK could use a little autism awareness. Like, you know what I mean? like while A lot of people could use some autism awareness.
01:15:20
Speaker
It is glaring, glaring right now. And what i and what and what i have learned is that like, Even within the autism community. Yes. Desperately need more awareness of of people, of the of the communities within the communities. Absolutely. And the lived experience and intersectionality. and yeah Yeah. All of it. all we're not learning.
01:15:48
Speaker
We're not all learning and we need to be learning. Yeah. Well, and I will say one of the, yeah I think, challenging aspects of the autism community that I have a ton of empathy for is i run into parents now who have 30 year olds and they are years into their journey and they have tried all the things, things that without autistic adults, I probably would have done too.
01:16:12
Speaker
And it's how do we step into these spaces and be kind and compassionate, but still continue to move the ball forward.
01:16:23
Speaker
Because, you know, how old is my son? Seven, 20 years from now. mean, I already look back and have regrets. There's things I wish I would have known. There's things I wish I would have been more gutsy about, but like when it all piles up and you're sort of at the, like, you know, part of the journey where you lose all your support, your resources, like,
01:16:40
Speaker
It's going to be a hard thing. And so it's like, how do we have a compassionate dialogue but still keep moving the ball forward? Especially for people that have been forgotten is probably a too nice person.
01:16:56
Speaker
You know, for for for families and communities that have literally been pushed as far to the margin and out of sight, out of mind as as we can. live...
Societal Attitudes and Advocacy for Change
01:17:07
Speaker
i and i i live if if you spend some time in Los Angeles and when I like, if you ever talk about anything political in Los Angeles, everybody, everybody likes to talk about the homeless crisis we have.
01:17:20
Speaker
um sorry I use the quotey fingers because it's a crisis of our own creation. yeah ah And, and what everyone's, what everyone says is well we, we, we need to get the homeless people off our streets.
01:17:34
Speaker
And I, whenever I, I'd always like, tweaks my brain a little bit when someone says that because in my brain I'm like that's not really what you think what you think is we need to get homeless people off of my street you don't have to care where they go i just don't want to see them and i think that I bring that up but ah yeah i think for obvious reasons because that is also what we do to disabled people who quite often end up living on the street and so like
01:18:05
Speaker
it it is It is a very American thing to just like out of sight, out of mind and it And imagine being that person who has been disregarded for 30 years.
01:18:20
Speaker
Yeah. And so I'm with you and I understand why. ah why i and i i very much understand why ah but like people in the autism community would welcome what ah RFK says.
01:18:36
Speaker
Personally, he gives me the ick and I, I dislike pretty much everything about him. But you know, when when you are desperate, you, you know, will, will any, when you are drowning and someone throws something at you, you might grab ahold of that barbed wire.
01:18:52
Speaker
Yeah. Well, and what's so frustrating about this space, and maybe this is a better way to say it than the way I said it before, but like what defines the narrative at large is a very narrow point of view.
01:19:06
Speaker
And I had Dr. Alicia Broderick on the podcast. She wrote the Autism Industrial Complex. And so much of like the math like the mass opinion of what autism is comes through one very specific compliance-based channel.
01:19:20
Speaker
She doesn't even blame ABA. She's just like, it rode the wave of this like fear mongering campaign that started however many years ago. And I think what's so frustrating is the second you step outside of that, everybody's saying the same thing.
01:19:33
Speaker
Dr. Barry Persat, like there's so, Ross Green, like so many people are saying the exact same thing. and it's like, how do we move the conversation from the behavioral one to the developmental one in a way that's not going to like, in in ah in an effective way?
01:19:50
Speaker
Because I feel like the medical profession absolutely drives how everyone sees our kids. so and Sorry. and yeah i like i I love what you're – I think the conversation is – I think what you're saying is happening.
01:20:04
Speaker
i think the the the issue that I have seen – Because, I mean, maybe maybe I am – I just operate in very progressive ah autistic spaces where I think those conversations are happening.
01:20:18
Speaker
I think the issue – is that is the money is that like like you know if if i want like if i called my csc like i could put and my son is eligible for like 24 hours of aba therapy a month like i could have him in an aba program like that with absolutely no problem because there is funding for it because the law has the law states that like you know, AB, like, cause ABA has cornered the market in terms of like autism therapy.
01:20:51
Speaker
Like they almost have a monopoly on it. And so it yes yes. Changing the conversation is vastly important, but we need to be changing the systems and the laws because as long as the law says, well, this is what's available in this only. Cause if I, if I wanted like a floor place plan or if I wanted to, you know, like,
01:21:11
Speaker
uh, get him into like equine therapy. Like I'm going to have to jump through 19 hoops to get it. And I still, and I still might not, but you but unlimited ABA therapy is available at the drop of a hat because that's what the law says. So I love the, I think changing the conversation is the first step. And i think we are doing that, but I think we also need to focus on what the law allow, ah you know, is providing for for us as well.
01:21:37
Speaker
And if we're being back to Layla's point, if we're being really revolutionary, ah One of the things Dr. Broderick said that sits in a very controversial bucket is she's like, to be completely transparent, like this whole campaign of which ABA rode the wave actually created the idea that intervention is necessary in all circumstances.
01:21:59
Speaker
She's like, so the conversation piece is taking a step back and being like, do we actually need to intervene? um Which is so really- Something that took place make.
01:22:11
Speaker
Number one, Google how much, how big of an industry ABA is. Billions. It is in the B. Billions. Okay. That figure. So just, and the insurance companies and all that. So that's all i'm going to say on that.
01:22:25
Speaker
The other thing I want to say is, Christy, you had a point about moving away from medical, moving towards developmental. you said? I said developmental because I speak in terms of therapies, but yeah, the medical, social, and then- ah friend i i I want to add to that and I want to say and I think Elena I want to bring you back into this too because I think with all disabled people what is happening right now is that the rhetoric is further perpetuating a harmful stigma that actually dehumanizes.
01:23:04
Speaker
disabled folks and pull out of all of the everything. It's like at this level here, this is what we need to be combating right now. We can get to that from different paths, right? We can all, some of us feel like we trust it Some of us feel like we don't, but at the end of the day, we should all be riding the wave of, okay, but these are human beings who are worthy of love, dignity, and respect, period.
01:23:31
Speaker
Let's start there. And then let's have some courageous conversations about how we how we support that. yeah That's where I feel like we're even... that that awareness piece really needs to be at the forefront. It's like, but these are human beings.
01:23:45
Speaker
Yeah. They are whole humans who are worthy. They are worthy just as they are, you know? and and that's something that I think I'm really trying to do with my platform and try to like create a safe space. You said something about having compassion and understanding why people are feeling how they're feeling.
01:24:03
Speaker
I think
Personal Perspectives and Wishes for Change
01:24:04
Speaker
we all need to be exercising our empathy more and more as hard as it is right now, because these are very emotionally driven conversations. Oh, 100% on both sides. No, I totally agree. Yeah. um All right. i how about we, does anybody want to leave? So usually what a question I ask at the beginning of the conversation, but we'll end with it this time um is if you could wave a magic wand, what would you change about this space?
01:24:30
Speaker
So let's do that. And then we'll do outros. Elena, you want to go first? Yeah, I know my magic wand. So actually a couple of days ago, was thinking about this because I do listen to your lovely podcast. And every time I hear that question, I think, oh oh my gosh, these people have such good answers.
01:24:45
Speaker
And they're always so like focused in their industries um and their expertises. And what is mine? um and But I had this hard, hard time earlier in the week where all I wanted to do was wave a magic wand and enter my daughter's body for one day and know what she feels.
01:25:03
Speaker
and know how she's thinking and understand what she's experienced and how she's experienced it. um Then i sort of got over that, no, I don't have no magic wand.
01:25:16
Speaker
um That's never going happen. But I think um as of this morning, and I was thinking about this, but our conversation that like took place seconds ago, minutes ago, um speaks to it is um I feel right now all of the effort and energy – that so my daughter was born in 2015. So I had no experience in the disability community before 2015.
01:25:39
Speaker
And um from there it was, I thought that I was bringing her into this world that was so open and so, you know, moving forward and everything was great and everyone had everything figured out and she was going to be safe and loved and supported. And we did have a lot of that.
01:25:56
Speaker
um But then by the time she was four, we had school trauma, um which was, restraint with packing tape in in her classroom by her special education teacher in a public school.
01:26:08
Speaker
um So that's an episode for another day. But feel like we were using so much strength and effort to move forward.
01:26:21
Speaker
And I felt like I had entered a train. We talk about the shoulders of those who came before us that we're standing on and all of the effort. And even if we don't see eye to eye with the older families that we were just speaking about. ah time That's okay. That even if we don't see eye to eye with the older families um and because their experiences were so different and their, you know, just time was different then um and they did their best with what they knew and we're doing our best with what we know.
01:26:49
Speaker
But we were always moving forward. And in recent weeks, it has felt like all of that same effort, if not more, is being exerted to just hold still.
01:27:01
Speaker
And how unfair and disgusting is that for our children? um If I was quiet before, it was just because I was trying to keep myself composed, um which now I've lost a little bit. No.
01:27:12
Speaker
But magic wand would be that there's no rewind button. There's no going backwards. It's not possible. We know too much. and ah And maybe it's not a magic wand. Maybe it actually is possible.
01:27:26
Speaker
And that we can just keep the ball rolling forward with conversations like these. Yeah. And not being quiet. Yeah. Yes. yeah I like that. You bring up a good point, I think, when everything started going crazy in general outside of the disability space.
01:27:43
Speaker
Someone said the most important thing, the most important guard we have against tyrany tyranny, however you say that, is to not start making concessions and hiding before it's demanded of us. And I think about that all the time with what's going on right now with disability. It's like, It's so easy to shift focus to like playing offense. and it's like like no like I still have to raise my kid in a world where it is very much known that XYZ is better for him than not. so like We're going to have to do two things. and If I have to sacrifice one, it's going to be the offense.
01:28:19
Speaker
That's not me this time. all good That was me. okay You have a very fiery bubble. I'm Maybe those the magic wands being raised. Yeah. That's it. Thanks.
01:28:31
Speaker
Layla, what about you? magic What about you? Me? Yeah, Layla, sorry. Oh, okay. First of all, Elena, I'm so sorry that your daughter experienced that. I know. It literally makes me ill and angry at the same time for your family, and I'm so sorry the system failed you and her. I want to i want to like i want to like drive to New Jersey right now. Let's go. let's go i hope they're in jail, honestly.
01:28:58
Speaker
No, no. Yeah. My- I'm sorry. I was saying no, not that I disagree. No, they're- We got you. We understood. Nothing happened? There's no repercussions?
01:29:12
Speaker
um Oh, you can't- Not really. Okay. Yeah, not really. Maybe we can take this offline and we can... yeah that very you and but I've written pretty extensively about everything.
01:29:26
Speaker
um We have a complaint with the Division on Civil Rights in New Jersey that's been open for four years. um And actually, I'm also on ah board for a nonprofit in New Jersey called End Seclusion and Restraint New Jersey. So there's the Alliance that's actually- I need the Alliance, yeah. They're based in Maryland. So we're an offshoot of that.
01:29:47
Speaker
i And I'm also going next week to Washington, DC to, there's no there's no legislation out right now. So CASA is Keeping All Students Safe Act, which is about eliminating at least prone restraint and then seclusion.
01:30:01
Speaker
um And that has gone through two Congresses so far. It goes nowhere. um It hasn't been um proposed yet in this current Congress. um It probably will be, but there's so much noise right um right now that it it would get no traction. But eventually we will eliminate these harmful practices. There's no place for it. There's no reason for it. Oh, absolutely zero.
01:30:24
Speaker
It's abuse, period. I'm going to connect with you after. I'd love to support in whatever way I can. I'm super passionate about that. Yeah, let's do it. yeah Yeah, let's do it. Let's join forces.
01:30:35
Speaker
um What was the question? If you did, if you did not be passionate about this. Okay, magic wand. If I had a magic wand, and maybe this is a different spin on how to answer this question, but I would instill in the hearts of and minds of all people,
01:30:51
Speaker
that the true experts when it comes to disabled folks and specifically I'll speak to autism are the people themselves. yeah I will shout that from the rooftops. um Autistic adults are the experts.
01:31:07
Speaker
um Lived experience is the expertise. yeah I really believe that and i would I want everyone in the world to understand that. um yeah And to to center those voices and those experiences.
01:31:22
Speaker
First and foremost, that would be my magic wand. Very cool. Agreed. um Agreed. David, what have about you
01:31:31
Speaker
I'm going a little bit broader, I think, than I originally anticipated. I wish that i wish that
01:31:43
Speaker
are a people in general would uh look at disability as more as as less of a less as less of a tragedy and more of an inevitability yeah because you know like not to like you know get to all like edgar allen poe but like We're all like, you know, like if like we are all like we we we should all be, you know, fortunate enough to live long enough that we're physically disabled. And some people start their life disabled and that's their life. And that's great.
01:32:20
Speaker
And it's it is. And I think if we i just wish I wish we were just able were we're able to look at disability more with our eyes open and being able to take in what that person is is putting out because I do think so much of so much of of the ah the issues that we face as parents of disabled people face is that society at large just won't look at it and because it's uncomfortable and because it makes us look at our own mortality and if we were able to if we were able to
01:33:05
Speaker
confront that and just be cool with it, I think everyone's life would be a lot better. Totally.
Diversity, Acceptance, and Holistic Parenting View
01:33:11
Speaker
Yeah. Oh, that's a good one. And a conversation, like when you say that to people, like we're all going to be disabled eventually. People don't talk to me. And anyone can become disabled. At any moment. Yeah. For any reason. At any moment. And disabled experiences are what create more diversity of humanity.
01:33:34
Speaker
yes That is part, an integral part of the fabric of what makes us human beings. And in some respects, this is, you know, less profound than what you just said. It also makes all of our lives easier.
01:33:45
Speaker
makes all of our lives easier. I had someone on um talking about inclusion and ADA and he's like, sidewalk slopes, they never existed until ADA. a He's like, have you ever tried to get a giant rolling cart up the side of a curve?
01:33:59
Speaker
but Like it's in it's not easy. It's like it makes everything easier when we just sort of like take a step back and assess need. oh So yeah, I love that. We'll be talking about city planning and infrastructure.
01:34:11
Speaker
That's one of the podcasts. that you're And how it relates to disability. Yeah, absolutely. ah think I have. So I want to answer this question because I always ask it never get to answer it.
01:34:25
Speaker
um I have two. The first is when it comes to neuroaffirming parenting, to sort of round everything out and being a neuroaffirming person for any autistic person in your life, I wish we could move forward.
01:34:41
Speaker
I wish we could give space and help everyone understand that none of us are good at this. Like we're going to feel uncomfortable. We're going to have to confront our own biases. We're going to mess it up.
01:34:53
Speaker
Like I think a lot of times people look at this neuro affirming space and they're like, oh, you just don't want to tell your kid what to do. Or you just, you just want this to all be bubble gum and roses all the time. And it's not, and it's like, no, it's like, it's actually not easy.
01:35:06
Speaker
I'm like, it would be a lot easier to be correct all the time. I'm like, and truth be told, I'm like, I, you know, I know it's a family show, but I eat shit every day. Like, like it's not an easy thing.
01:35:17
Speaker
And that's okay. Like, I think someone texts me one time that they were listening to the podcast and they're like, I'm always trying to learn, even though they have done things a different way in the past. And I'm like, it's like, I think that's all our kids want from us. I think that's all the ah autistic community wants is from us is to just keep learning.
01:35:34
Speaker
um And the second one, my broader soapbox, um, I really, really wish the world would reevaluate how it sees kids and behavior as a whole. Like, I think if we could just get past, even in the neurotypical space, that kids are the sum total of their behavior and our abilities as parents are completely depicted by that, like we'd be so much further the autistic space as well. I agree. Those are my two. I also think like not magic wand thing, but I think every parent should –
01:36:08
Speaker
apologize to their kids more. All the time. like i like like Because like we mess up all the time. All time. We mess up and we get things wrong and and it shouldn't be a big deal. But like if we want like if we want them to learn how to take ownership of their mistakes, like we have to yeah show them what that is.
01:36:26
Speaker
And if the state of our world has shown me anything, it's that our generation of children grown into adults have not look appropriately learned to take ownership of their mistakes.
01:36:38
Speaker
No. I would just like to say that I think I over-apologized in my house. I think I heard that a couple of years ago. And now for everything. I'm sorry, mama. I'm sorry, mama. No, it's okay.
01:36:50
Speaker
You can't do anything wrong. That is my favorite thing. ah That is my favorite thing about parenting is that everything is a double-edged sword. They're such a mirror and they're mirrors.
01:37:01
Speaker
Both of my kids, both of my kids, my technically non-speaking one and my very verbal daughter, one of their first phrases was, I'm sorry. And you're like, no.
01:37:13
Speaker
Whoops. Didn't think we were going to take the patriarchy down by giving you our problems, but okay. No. but we do I just have one thing to say. You had a point about neurodiversity affirming and it not being perfect um and sunshine and roses. And I think it actually gets a bad rap for um being, ah you know, romanticizing.
01:37:37
Speaker
um And it's actually not that like. Yes, we can choose to focus on a strengths-based approach and philosophies with parenting, but my understanding of neurodiversity affirming is actually understanding the wholeness of parenting an autistic child and that there is really good there's immense challenge, yes, but that is matched by immense joy and everything in between.
01:38:05
Speaker
And so it's just coming at it from this whole lens as opposed to what I think people think it is. They're like, you're just romanticizing. It's not sunshine and rainbows. It's like, no, you're right. It's not. It's everything.
01:38:17
Speaker
And that's the beauty of it, you know? Yeah. Absolutely. No, totally. um Awesome. So I have to run for one o'clock.
01:38:28
Speaker
ah that I might have been prepping for a little bit behind the scenes while we were chatting. But ah there's there's never downtime in my house. um But I do want to say just if everybody could tell us like where to find you, what you're working on, um and then we'll link it all in the show notes too so people can follow if they don't find me because of you in the first place.
01:38:46
Speaker
So... Go ahead. Elayne, want to start? Oh, gosh. I mean, I'm a big nobody. Don't look for me. She has a great Instagram account. She writes all the time. you're a big nobody. yeah I write a lot. I write a lot. I've been writing my whole life. Understanding...
01:39:03
Speaker
life through stories is the only way I can process anything. So um I write on Burton County Moms um and actually the piece it's publishing in like an hour um is this episode. So I hope that maybe you'll check it out. um I think the title is something like um who gets to...
01:39:21
Speaker
who gets to tell the autistic or who gets to narrate the autistic experience, I think is my title. yeah um And it's exactly this. It's there's not one single entity that gets to narrate the autistic experience. Right. um ah At her own pace um on Instagram at her own pace dot com.
01:39:39
Speaker
And and ah What else? I am an NDSS, um National Down Syndrome Society, Down Syndrome Ambassador. I work on, like we talked about before, NSARNJ, which is End Seclusion and Restraint, New Jersey, um a lot of different places doing a lot of different things. I don't get paid for any of it.
01:39:58
Speaker
You're a queen. Awesome.
01:40:03
Speaker
David, why don't you go? you can You can find me on on the social medias, ah my on Instagram and TikTok mostly. i am ah at dadvidco. It looks better than it sounds. It's D-A- David Coe, C-O-E, my last name.
01:40:21
Speaker
ah yeah. Oh, yeah, that's cute. it look The thing is, it looks really cute. And then when I have to tell someone about it, it's likema lala yeah they his yeah that ah and i' am ah like, it's mostly just ah my thoughts and experiences, the the joy and the struggle.
01:40:42
Speaker
ah and i just try and I just try and be... ah is open and I really try and create a space where people feel comfortable sharing their stories.
01:40:55
Speaker
Because personally, because, you know, disability and autism looks different for everyone. I think that like, when we like, like when I go into my son's classroom, you know, he's in an autism core classroom with 12
01:41:12
Speaker
they all, they are they're they like, like my son is in my, my son's flavor of autism is, is individual is yeah different from his classmates. And so what I think is great about like coming together over social media is because there's such a larger population, I get to, i get to hear and see stories that are similar to mine and I get to connect and just feel less alone.
01:41:38
Speaker
yeah I hope that, I hope that if, you're following me that like you can get that experience as well. Very cool. Awesome. Layla.
01:41:50
Speaker
Yes. Similarly, i am on Instagram and Tik TOK at sprinkled spectrum. Um, it's a kick-ass community. Sorry. It's really fun. Um, of really, really informed, empathetic, incredible human beings.
01:42:05
Speaker
Um, It's a really cool space and a safe space. And that is my mission to create a safe space to be able to talk about these things and have courageous conversations. Very cool. Very, very cool.
01:42:18
Speaker
Awesome. Well, thank you all. This is amazing. um I might want to do this again if you're down for it. Because we could keep going for days. Awesome. All right. So I will link everybody in the show notes. um And thank you guys again. This was amazing.
01:42:32
Speaker
We'll chat soon. Thank you so much. Take care. Hey. Bye. you about that after. Definitely. Awesome. ah
01:42:41
Speaker
That was a really fun episode. i hope you enjoyed it as much as I did. um If you are interested in following or catching up with any of our guests on the panel, I will link all of their handles in the show notes below.
01:42:54
Speaker
you have any feedback for us or any thoughts, please hit us up on Instagram or the website. And if you are in the New York, New Jersey area and consider yourself a type B mom who is not fully figured out summer yet, we have a couple of camps and programs that the information for just launched online. So please check them out and sign up if you are around. We'd love to have your kiddos.
01:43:19
Speaker
um And with that, we will see you next week.