My Access Need Is a Paradigm Shift

Joyner and Shubha discuss what it looks like to parent from a place of accepting that our kids, and ourselves, have needs.  Not trying to question them or change them.  And we share examples of what that really looks like.  Even when it's HARD.  Even when it means our non-speaking kid needs to stay in the kitchen 24/7, even for showering.  And we talk about how often the need we and our kids have is actually a paradigm shift.  The harm it does to parents and families when this isn't the approach taken by professionals.  And what does this all have to do with the resistance in Minnesota?  A lot.

• (00:20) - We all have needs. What are our needs right now?  Does anyone have special needs?  How to access needs.
• (13:00) - Examples of accepting and embracing a need around movement and eating
• (24:00) - It's hard when Needs are viewed through a list of "standard" needs. Sometimes the only need is a paradigm shift. Example of meeting paradigm shift need by finding amazing school.
• (42:40) - Parenting non-speaking kids means centering trust, because we often know what our kids need, but not Why. Practical examples of how we support our kids to feel trusted, in non-traditional ways.
• (01:12:00) - Adults put their access needs onto disabled kids, because they cling to normalcy. The MN occupation and why normalcy is killing us.

References:

• Bri Guerra, nonspeaking advocate for change
• The book Shubha made for A- on all the ways to say no
• Pictello Shubha made to show A- we wanted to know his concerns

Creators and Guests

Host

Joyner Emerick

Host

Shubha Balabaer

What is Unbound Futures?

Unbound Futures is a conversation between Joyner and Shubha—two parents raising autistic kids with high/complex support needs—that explores a life where parenting becomes a site of innovation, community becomes a strategy, and liberation is something we learn to practice together.

Grounded in their own lived experiences across race, class, gender, queerness, and disability, Shubha and Joyner invite additional practical wisdom and political analysis through conversations with guests with lived experience in disability justice. By intentionally centering the legacies and priorities of non-speaking and highly marginalized disabled people, Unbound Futures reimagines the role of parent caregivers in movements by connecting the daily work of supporting direct care, communication access, safety, education, and community integration to how we are building freedom from the margins.

Shubha: 00:00

Welcome to the Unbound Futures podcast, where we explore parenting and caregiving for the most marginalized disabled kids as a disability justice practice, as a practice of embodied liberation.

Shubha: 00:19

So this episode came out of... I really loved how in the last episode, you had said that comment about how, thanks to sort of going through this with your first kid, with your second kid, you're parenting from this mentality of knowing that they have needs or that he has needs and accepting that he has needs and trying to meet those needs rather than question them or change them. And that later you were then like, Oh, that's disability justice. And then you were like, Cool, there's a word for that. And I thought, and I got feedback from people too, that that part was really important because for so many of us, that actually is the underlining thing that shapes our parenting.

Shubha: 01:03

And I think that's almost what makes it hard for me to speak to other parents sometimes. Is that if you're not coming from that place of accepting that your kid and all people have needs and you don't question the needs and try to change the needs, that means it's really hard for me to talk to other people. And so I was like, let's expand on that as an episode because I think that is both philosophically incredibly important, and then practically, it's like... really hard.

Shubha: 01:35

And so like, this is also a chance for us to reflect on what it looks like practically and also hopefully like other parents of kids with higher support needs can relate to some of our stories, you know. Because we're not talking about easy needs to be met sometimes.

Shubha: 01:56

So that was what I proposed to you, and you were like, great.

Shubha: 02:00

And then I wanted to start the episode..... Because this was a profound experience for me in understanding disability justice, is really understanding that I have needs, like literally every single person has needs, but usually those needs are met for non -disabled people or people like me with like lower support needs.

Shubha: 02:19

And so we do this at work actually for all of our meetings. We'll start the meetings by saying like, "Do you have any unmet needs?"

Shubha: 02:27

So I wanted us to start and just start to name needs, met or otherwise, that we might have in right now in this moment recording this podcast. Like we have needs and some of them are met and some of them maybe aren't met.

Shubha: 02:44

So I can just share that I'll share a few like, obvious ones. I have a need for, high speed Internet, which I have, luckily.

Shubha: 02:52

I have a need in my case, I have a need for a chair, which I'm sitting on, and a computer, which I have. And I have a need for us to do this podcast in English, which... I don't speak any other language... so I have that need, which is met. Yeah, I'll hand it over to you Joyner. What needs do you have for this moment in this podcast?

Joyner: 03:14

Yeah. It's interesting. Being a multiply disabled person, when you, Shubha, proposed that we open it by speaking about our needs, I was immediately hit with this, like a somatic wave a little bit about how few of my needs are met in my day to day life as a disabled person. And so kind of how I think about frameworks of needs, relevant to what you were just describing about your needs, is I tend to think of a need more broadly, like an umbrella almost, and then the access requirements sort of under that as a sort of a network that holds a person such that they can sort of reach the need, having the need met.

Joyner: 04:22

So put some more specific language to that. So if you're talking about the need of, you know, your chair and your Internet and language access to making our podcast. And so I think about if I have a need to make a podcast with you, which is really actually a need for witness, expression, connection. There's some needs in there around meaning making and sort of organizing my own narrative of my life experience. There's advocacy needs in there. And so the podcast is actually a way to meet those needs.

Joyner: 05:09

Right? So then now I have to think about where is my access to making the podcast. So, there's the space. Right? I need a relatively quiet space. I live with a family of four, and I am not the only one home in my house right now. So I need that.

Joyner: 05:29

But what I was thinking about actually is how, though we're making a podcast, the format, which is I'm in my home and this is a virtual presence and a virtual recording in this instance, is not very different from how I attend school board meetings in my capacity as an elected city wide school board director for the City Of Minneapolis. And I had to miss a finance committee meeting, which is a committee I sit on, a couple of days ago, because I was experiencing so much positional instability that I did not have seating in my home that would have allowed me to sit upright for an hour to attend the meeting that cognitively, communication wise, and in terms of my preparation for the meeting, I would have been able to attend and participate. But I did not have positioning support that would allow me to do a core function of my job. And positioning support is actually a really big deal in my day to day life and something that I have been working with multiple physical therapists, equipment specialists, my home is being physically modified, we've done equipment trials, all these things.

Joyner: 06:58

But I don't know if folks think about that if you have positioning requirements as a disabled person, it can take years to, if you're lucky, to have access to what you need in terms of Medicaid services and these kinds of things. But even if all those pathways are open, it can take years to just get equipment and get it funded and get it matched and have health care professionals who feel that it's a good fit and sign off on it. So just to be able to sit or be mobile...

Joyner: 07:39

So I'm propped on pillows in my bed right now doing the best I can. And, you know, if I could if I could do more of my life lying down, that would make a difference.

Joyner: 07:51

And I think actually, that is very relevant to what you and I have talked about addressing in this podcast episode. Because, if you can imagine what my life would be like if I was allowed to lie down and be on camera and attend a school board meeting... And I tried it once, years ago, I wrote about it at Neuromess, and I was very much ridiculed.

Joyner: 08:22

And the experience of how I felt like I lost all of my cred as a politician and an elected official because I was propped on these pillows lying down to virtually attend this meeting. And you can go look at it. It's recorded. It's out there for posterity.

Joyner: 08:45

It was so intense, this bad feeling inside of me that it actually caused suicidality at that time for me. It was like... I needed ... I ended up needing to access mental health intervention supports.

Joyner: 09:01

So when I think about that and I think about then... I have the ability to communicate about this experience, about what I'm needing and to orchestrate my own support to get through a really hard time. I just wanna be clear again for anyone listening.... This was something that happened years ago. No one should be concerned about me right now. At the time, it was very challenging. Fortunately, I have the supports already in place and ready to go if I should need them.

Joyner: 09:34

But, yeah, there's no reason I can't do my job of attending a meeting, listening, speaking, voting, etc, lying down. And there's no rule against it. No one told me I couldn't. But the social atmosphere came with so much shame that it put me in a life threatening situation to have to experience that level of shame around just trying to find an access point to do my job.

Shubha: 10:19

Something you said that makes me think about what you just said... I'm like, I hope I don't sound heartless, but I know that you're in a good place now...

Shubha: 10:27

But something you said where you framed this as like, for you, the need is the bigger umbrella and then it's sort of like how you access that need made me think about how we don't use the term special needs. Or I learned , you know, after A- was diagnosed, I didn't know about this before, that of course his needs aren't special because his needs are like to eat and to have enjoyment and to have whatever, and it's the way that he might access those that might be atypical. And so in your case, you're describing you have a need for, I think you called it positionality, but you have a need to be able to position your body in the way that it needs to be in order to be comfortable. And literally every single person has that need. So for me, it's sitting in this chair, that's how I'm going to access that need. But my need, your need is not special. Your need is to be able to position your body however you need to position it. All of us have that need. And then the way you might need to access it might look different.

Shubha: 11:37

And that's why we don't say special needs. It's just needs. It's human being needs. And is it okay if I talk about, like, is A-'s need to move? Would you consider that sort of positionality? Because I have a good example of a need for A- around movement, which is the opposite of you lying down.

Joyner: 12:02

I would say two things. Number one, I'm not an authority. So just so you know, I'm certainly not saying that the way that I think about needs is the right way to think about it. So just to be clear on that.

Joyner: 12:17

And also how I think about mobility and then positioning as 2 kind of different categories ...mostly I think because that's how they're framed out when people talk about ADLs or activities of daily living and mobility and positioning. And then transferring is usually a third one that has to do with sort of body placement and and where and how a body is.

Joyner: 12:50

But, again, that's not necessarily an authority either. They could all be under, like, bodies moving and sitting and doing stuff, being physical, just existing.

Shubha: 13:01

Bodies existing, exactly. I was thinking about... Well, okay, I 'm just gonna say this. We'll probably go in lots of circles. I was asking Daniel last night for examples of A- having needs and how we just accepted those needs, maybe I'll touch on this later, but I actually had a really hard time thinking about specific needs that I could share that A- had that we needed to touch on.

Shubha: 13:34

But one that I... that we needed to embrace. But one, like, really sort of cute, funny story is that we did the thing where we had a hypothetical kid before we had a real kid. And with our hypothetical kid, we were all, according to Daniel, we were all gonna, sit together at mealtime. We were all gonna eat together and everything. Then we had real kid, and then slowly that became, especially once he was done with the high chair, it became... I won't go through the whole trajectory... but basically it devolved into, he literally eats whatever he wants, whenever he wants, wherever he wants, is more or less what happens.

Shubha: 14:14

You know, the other day, Daniel was like, "I'd prefer you not eat cheesy popcorn on the bed, but oh well."

Shubha: 14:22

Early in that journey of us just having to be like, "Oh, he needs to move all the time."

Shubha: 14:27

So that includes during mealtime. Like, he just needs to be moving, swinging, whatever ... is that we were making him pasta with, messy pesto sauce. That was, his dinner for every... that was, like, his one and only dinner. So...

Joyner: 14:42

It's wild because Foxy likes pesto too. And it's the only vegetable he eats.

Shubha: 14:48

A- does have smoothies, but, yeah, that's it. Smoothie and then pesto pasta. And then Daniel has to hand make it. This is all Daniel's fault. So it has to be fresh, homemade pesto, and so Daniel set himself up for a lifetime of making pesto.

Shubha: 15:06

Anyway, so we were basically... we went through the thing that I guess many parents go through at the beginning where at first we're like, "What? This can't be how A- eats!" and that lasted like a day. And then we were like, "Okay, fine. So he's gonna run around and eat all over the house." The problem is that we had a need, or Daniel especially had a need, to not have the house get really messy with, like, green pesto all over the place.

Shubha: 15:33

And so a part of embracing the fact that A- has needs and we're not gonna try to change them was that Daniel started to bake the pasta. And so like, he would make the pasta and then he would bake it and then the pesto would sort of bake onto the pasta. It's still messy, but like way less messy and way easier to clean. And then I also think part of it, and I'm sure every parent can relate to this, was eventually realizing that your house is gonna get really messy anyway and there's no way you're gonna clean it. Yeah, that was, anyway, it made me think of that where it's sort of like we're not gonna get A- to sit somewhere and do something that we say that he has to.

Shubha: 16:14

He will sit, but for what HE wants to do, not because we've told him we need to sit, and so that what you said sort of reminded me of that. But he's also six and he's not in a school board or anything. So that is helpful.

Joyner: 16:29

When I made a list of a few kind of concrete examples that I might bring, I had one that actually very closely relates to that because it has to do with Foxy and eating and movement and mess. So I will just insert that now. But also, wanna reference this piece to it that you had said in episode one when we were talking, I think about disability identities and this was actually when we were talking about class differences that we experienced in sort of the realm of paying for things out of pocket and going that sort of direct route versus utilizing systems and Medicaid. There's actually, I would say, benefits and challenges to each because I can guarantee you that the funding that I have through Medicaid to support Foxy is more than you and Daniel could pay out of pocket for services in a year. You know what I mean?

Joyner: 17:32

So it's not that one is necessarily more advantageous than the other, but people are using different ways to access support and get their kids' needs met so we can cover it all. So just for folks listening who may not know, my 10 year old child, Foxy, who has high complex support needs is on a Medicaid waiver, a DD Medicaid waiver. And so that is a primary mechanism that we use to assist us as parents in meeting his support needs. And so when Foxy was little, like a toddler, what we had as a setup for eating was one of those plastic high chair type seats, but it wasn't a freestanding high chair. It was the kind of high chair that you can strap onto a dining room chair. It wasn't just like a booster seat. It had a full back. You could actually like... It had like a tilt in place recliner so you can use it for an infant actually, and then you can sit it straight up.

Joyner: 18:42

And it has a full back on it and a three point harness, and you can then strap it to a dining chair. So Foxy, we had that from when he was a newborn, and so we just reclined it more or made it more and more upright as he got bigger and could hold his body upright. Positioning support for babies. Babies need positioning support too. But then this this high chair, we could not strap it to a dining room chair because Foxy from the age of one and a half or so, and Foxy's a big kid big for his age, always has been, would rock so vigorously in this chair that he would easily tip a dining room chair over and go down with it.

Joyner: 19:29

So we started strapping it to coffee tables. Like, so that and and this meant that we had to improvise different straps because the straps that came with it weren't long enough to go around coffee tables.

Shubha: 19:43

Oh my god. We did so much strap improvisation in the first three years for so many things. I forgot about that.

Joyner: 19:50

He would even even when we used coffee tables with wide bases... and at this point, we're purchasing these coffee tables out of pocket and having to replace them about annually because he would literally rock them so hard that the bolts would come out of them. And so eventually, when he was about three, we consulted with an occupational therapist at Gillette Children's, which is a big specialty multidisciplinary clinic here in the state of Minnesota, and said we need some advice about seating because at this point, we don't have seating for our kid that's safe. He's gonna get hurt maybe fatally so if he tips over the seating that we have for him. Well, eventually, and this took assessments and insurance and all kinds of things. It took a little bit, but we were able to get in a Rifton activity seat with hydraulics in it.

Joyner: 20:52

That and a high chair tray and a dynamic back. So the the back and we also ended up getting a stroller with a similar feature later, but this was different. The back was on a spring so that when he rocked against it, it absorbed that, because we didn't want seating that would keep him from moving. We wanted seating that would help him move safely and eat at the same time because not dissimilarly to you and Daniel, I was unwilling to just let the kid have spaghetti all over the house because I was like, I can't keep it clean.

Joyner: 21:35

You know what I mean? And, you know, it just it helped Foxy have some routines around eating to have like a a place. He seemed to like having a place. At some point, he years later, he could climb out of the high chair, so it wasn't safe anymore. But we used it for years, for every mealtime.

Joyner: 21:54

But I think what was particular about it was that the primary need of this piece of equipment was to support his full body stimming while eating safely. So he wasn't gonna tip, he had some shock absorption. And I think that's really illustrative of how we looked at it versus how a lot of families might look at it, because some families might say the need is for the kid to eat safely. And so the mechanism to get there is train the kid to stop moving around. Whether that's with you and A-, train the kid to sit in one place until they're done eating, or whether that's like with Foxy train the kid to stop moving around so dang much and rocking his body on everything.

Joyner: 22:46

But both of our families, without too much thought it seems like, were like, no. No. No. No. No. The thing to do is to say what already works for my kid. And then what can we build around that to both facilitate the kid and make it work in the best way possible for the family and the household.

Shubha: 23:09

Yeah. And I something that you said made me think of going back to this other point, and I don't remember now. Clearly my brain is sort of all over the place because I love talking about needs. Oh yeah, one thing I had wanted to say and this is why I think it relates too, is that I realized as you were speaking, like, obviously what we did with A- wouldn't work for every kid. Like, there could be a very big choking hazard for some kids.

Shubha: 23:39

For whatever reason, and maybe this is, completely medically inaccurate, it felt to us like A- did not have any concerns around chewing and swallowing. I don't know why, maybe that was bad. I did make sure that I watched videos on how to do the Heimlich maneuver. I was like, we'll figure this out. But, you know, A- was like not willing to be in the high chair, whereas Foxy was.

Shubha: 24:06

And so obviously, like, the way that both of our kids were accessing eating was going to look different because they're two different kids and it's going be different than some other kids, so it's not like my advice is going to work for everybody. It could be in fact very dangerous for some people, what we did. So I wanted to come back to... I hope I can say this well....

Shubha: 24:28

You and I sort of touched base about this before. So we had planned on doing this topic, so I was spending the last few days sort of thinking about the topic of needs. And it was really easy for me to come up with ways that this has manifested in my life. Changing the paradigm around needs has helped me understand my needs. It's helped me with Daniel. It's helped me working with you. It's been really fun working with you and being able to say what our needs are to each other.

Shubha: 24:56

But for some reason, I was having this block around thinking of examples for A-. And it was Daniel that came up with the examples. I realized, I think, and this relates to the seating, I think it's because

Shubha: 25:15

...everybody has needs, everyone has ways they need to access those needs, and for some people, including me, that's often just met in society. And so I don't have to think about it, because most of the way that I need to access my needs tend to be met fairly easily. And if there was a spectrum, I know this is not how disability works, but I'm just gonna say this because hopefully it's okay, you can correct me if I'm getting this wrong... but A- would be on the total other end, where so few of his needs are, or the way that he needs to access his needs, however you want to put that, are met and so in a way it's almost hard now for me to actually break down specific needs that A- has that we needed to embrace. Because it's almost like, all of how ... not all, but a lot of how A- is, is just often not met.

Shubha: 26:12

We have met and embraced whatever we can, and we'll share, and maybe we'll have time to get to some that are very hard. But because of that, it's hard for me to break down specific things.

Shubha: 26:23

And the seat thing reminded me of that because I know for a lot of kids like.. This is how traumatized I am from, like, random parents of neurodivergent kids with lower support needs just giving me unsolicited advice, because I'm imagining someone listening to this going, "Oh, you should give a bouncy ball to sit in to eat. That really worked for my kid with ADHD or whatever." and I'm like, "That's great." But it's not like A- has five needs that I can be like, here, I'm gonna meet these five needs. This one , I'm gonna give him a bouncy ball. This one, I'm gonna give him heavy work.

Shubha: 27:02

I feel like 90% of people tell me heavy work all the time. So this one, I'm gonna give him heavy work. Like, it's more like his entire being, which is an amazing, great being for him, can not be met by our capitalist society. And so it was hard for me to think of something specific, but it wasn't hard for Daniel. Daniel came up with specifics. So it's also maybe just a symptom of my really bad memory.

Shubha: 27:30

But yeah, right now I'm just sort of like, how do I even break that down? Cause our whole lives now are oriented around the fact that we are embracing of A-'s needs and they're often very different from typical or adjacent to typical person. Yeah, That was the thing.

Joyner: 27:52

I was really... when you had touched on this before we started making this episode, it really stood out for me what it what it seems like you were talking about, because it is the requirement of a paradigm shift, you know, or a mindset change. When I think back to the story I told before about laying down to virtually attend the school board meeting and being ... You have to know, Shuba, that when I attend the school board meeting virtually, I'm like on a jumbo trunk. The screen that I'm projected on in this boardroom, okay, is huge. So my face is extremely outsized to the faces of my colleagues sitting at the panel. It is a lot of being perceived, which as an autistic person, not my fave. But when I think about that, and I think about how I said, like, there's no rule against it. There's no, like, logistical barrier that makes me unable to participate if I'm laying down. It is all just the paradigm shift. Right? I would need not just the ability to lay down and attend virtually, but I would need to work in a field with people who did not experience secondhand embarrassment or secondhand humiliation because of that.

Joyner: 29:32

I would need to be accessing my work within a realm that did not think less of me and my capability to perform my role because I was lying on a pillow being on this huge screen in a boardroom during this meeting. I would need a workplace that was explicitly affirming of different peoples positioning needs. Ideally, I would need .. yu know I mean, I am a director in an organization that employs some 6,000 people, so this is realistic.... I would need to have other people employed by my organization who also had visible disability needs so that this was normed in all the departments and workplaces and I wasn't out here by myself.

Joyner: 30:25

Right? Those would be the access points truly. I would need for us to conduct business differently. I mean, we use Robert's rules, and technically, that means that anyone can call a recess for a personal need at any time. But I have never in my years on school board or my years watching school board meetings before I was elected to that board, I've never seen anyone exercise that.

Joyner: 30:57

That is not normed. And I do not know necessarily that all my colleagues would even know how to handle that kind of a Movement within the Robert's Rules structure. And that's like having Robert's Rules and knowing how to use it. There's even a lot of considerations for access there.

Joyner: 31:17

But the point is that I don't need the ability to lay down. That's met. Right? I can lay down. I have a bed. Have a place. I have a camera I can aim at me.

Joyner: 31:31

The unmet need is the paradigm of my workplace. The mindsets of the people, you know, what is normed. Right?

Joyner: 31:44

And so when we sort of like, when we when we locate our kids in that same kind of a situation, part of it is actually meeting their direct needs. Like, my kid needs a bath or a shower or some sort of cleaning. How can we do that?

Joyner: 32:03

But part of it is also a world where, you know, if a kid has unbrushed hair sometimes there's some understanding about how sometimes there's a process to figure out how to meet a need , needs have to get triaged sometimes. You know, we're just less immediately judgmental. I mean, this is comes up with A- and play. Right? A- has access to play. Right. He needs a world where his play is not criminalized, and that's outside of him and outside of you. And so and I think there's the the the two pieces. There's the how can we change our mindsets, you and me, us as parents, help our kids get their needs met. And then there's also what are we contending with as well that's beyond our control.

Shubha: 33:05

Oh my god. Okay. So I have two things that this brought up. One one is, like, totally something I just thought of right now. Do you know Bri? I don't know how to pronounce Bri's last name... Guerillar They are on social media. They're a 13 year old nonspeaker. We're friends with their mom, Kate Roe.

Joyner: 33:26

I mean, I don't know them personally, but I know who they Yes.

Shubha: 33:28

Okay. So they posted something, like, yesterday or the day before, and it was very short. Bri did. So Bri is a nonspeaking 13 year old, and they posted about how they were in a restaurant and they needed to order, and the waiter... and basically Bri's mom was like, "Bri will take a second to type out what they want to order."

Shubha: 33:51

And then the waiter said like, "Don't worry." Like the waiter was trying to be nice, right? The waiter was being nice and just saying like, "Oh, that's fine, don't worry about it." And then Bri basically in their post was like, "I don't, I'm not worried about it. Like why are you telling me not to be worried about it?"

Shubha: 34:04

And then there were all these people that commented and were like, "Oh, the waiter just ...it's just a saying." And then Bri... I'm not speaking on behalf of Bri... but what it told me, or what it brought up for me is that we only say "Don't worry about it" when there is something that some people want you to worry about. So if there was a total paradigm shift, nobody would need to say don't worry about it if you're a non speaker that's going to take some time to type out what you want to order, or you're a very anxious person, or you're a slow speaker, or you need time to process. No one would be saying don't worry about it because that would actually just be normalized as that's a way to access your need, your need being to order the food that you want and everybody's going to access that in different ways. So it reminded me of that.

Shubha: 34:51

And then if I can, it reminded me of also one of Daniel's other stories. Maybe I came up with this story. It was around A-'s need for school. This will be a whole podcast, so I'm not going to do that, but I'm just gonna share a brief snippet of how we did find the environments that had paradigm shifts for A- going to school. And so, you know, A-'s first foray into school was preschool, and he's unschooled now.

Shubha: 35:16

We don't have him in any school. That was basically his choice, but he went to preschool. He was like two, I think. It was right after the pandemic, or not after the pandemic, but when school was just open for the first time. And it went really badly, and we didn't know. I don't even know if we knew he was autistic.

Shubha: 35:35

Maybe we did, but basically, just imagine typical preschool. We dropped him off in the morning, picked him up at the end of the day, and the school was really amazing because they basically said to us, "He's having a horrible time and he's basically shut down, and we don't think that this is normal separation anxiety. And we love him and he's great, but we're worried that this is going to create long term trauma" Which was a wonderful thing for that school to tell us. So we took him out of school.

Shubha: 36:03

And then we were able to see a bunch of his needs and we had a need for him, although the next topic that I'd like to bring up is how it can be hard because he's non speaking, so we actually don't necessarily know how he can access his needs because he can't tell us. But we felt like we needed to be with him for him to be able to go to school. Me or Daniel.

Shubha: 36:29

Well, Daniel, not me. I'm not at all with A-. Okay. Daniel needed to be with A-. A- had a need for a known person to be with him all day.

Shubha: 36:40

So we knew that.

Shubha: 36:41

We also knew that he, or maybe we learned, like, A-'s start time needed to be whenever the hell A-'s start time needed to be. A- needed to end whenever the hell A- needed to end. A- could not start at the same time. A- could not do a school drop off because that is a very sensory overwhelming experience, I think, for many people.

Shubha: 37:04

So he needed to come later and he needed to leave earlier, if possible.

Shubha: 37:08

Or not if possible, sorry. Wow. That was like Shubha people pleaser. This is this is Shubha parent trying to embody needs. Forget that little people pleasing. That's totally, like, the me thing ... My needs, if it's okay with you. Okay. This is A-, and I don't care. It has to be okay with you.

Shubha: 37:34

Okay. So we needed those things, and, you know. And it was very hard to find because a lot of the preschools we spoke to would say that for all kids, they do the best if you drop them off and you walk away really quickly. In their mind, I guess this is just how you access school, like every kid. And it was like every single kid, that's the best method.

Shubha: 37:56

And so it took a while, we found a woman who was like basically like every kid needs something different. We absolutely can work with you. And so we did that for a little bit. However, that school didn't have any windows. It was like in a basement. And so that's when we learned one about A-'s other needs, which is windows.

Shubha: 38:18

And I don't know why. Like, this is where the non speaking part, you know... I don't know if it's that A- always needs to... it could be natural light, but it could also be a feeling of being able to be outside or a feeling of being able to watch outside without being there. I don't know. Anyway, so that we realized was another sort of criteria.

Shubha: 38:39

And so, we found this amazing school... to your point of the paradigm shift.

Shubha: 38:45

We found a school that was incredible in Brooklyn, and they saw every kid as an individual, which shouldn't be shocking, but for those of you with kids, you know that that is actually very rare to find. A school that sees every kid as an individual. It wasn't important to them that A- was autistic. It's not like they only treated their autistic kids as individuals. They were like "Every single kid has different needs. All kids, whether they're non disabled, disabled, neurotypical, not neurotypical, they're all humans with needs."

Shubha: 39:20

They would let us start whenever Daniel could go with A-. They never made A- go into the classroom. There was a big play area which was right beside the windows, and there were big windows. The classrooms did not have the windows. So A- just stayed in the play area the entire time. All the other classes rotated in and out of A-'s play area, like, on their recess time.

Shubha: 39:44

So what you said reminded me of that because it was like I didn't know it until I interviewed that school, because we had other schools that we interviewed that were like, "Yes, we can cater to autistic kids" and "Here's what we do for autistic kids." But that was the only school that was like, "The need that we are gonna meet for you, is that we are trying to embody a paradigm shift. For everybody. For literally all kids, we are trying to embody a paradigm shift."

Shubha: 40:18

Like one little tidbit that I'll share and then I'll shut up is I have like this other whole example of how A- ... When A- was like a tiny baby or like 1 or 2, A- had this need for music and it was a really strong need. He needed to be playing music all the time, and it had to be his songs, and it had to be, like, you know, he would listen to five seconds of a song and then rewind and five seconds and rewind. So that need was a need that we met, I think, in a comical and beautiful way.

Shubha: 40:48

It started with us giving him an iPhone that we locked down to Spotify. Mostly because we were sick of just constantly having to use our phones, so we were like, we'll give you this phone. We then got a little fanny pack for him with a Bluetooth speaker so that he could always have the speaker with music on, like, all day when he was outside. So he was just this kid with like, this, like, two year old playing music, like, all the time. And the school also was fine with him doing it, with him having the fanny pack with the speaker at school. And we gave the school his Spotify playlist because they were just like, "Yeah, all the kids are gonna be into this. We'll play his Spotify playlist in the classroom all day." because it was all Jack Johnson and Raffi and stuff.

Shubha: 41:43

Yeah, it was just such a paradigm shift. It wasn't like because he's autistic, we're gonna do this. It was just like, "Oh, he has some needs to be able to access school, and that's cool. Like, everybody has needs to access school and these are his, and so we'll just meet them." And it was very beautiful.

Shubha: 42:00

But then eventually, A- stopped wanting to go and we don't know why, which again comes to the hard part, I think, raising a non speaking kid is that we don't always know what their access point is to meet a need because they can't tell us, and we can try to figure it out. And if we have time, maybe you and I can share examples because I know we both have examples of trying to figure it out. And sometimes we can't. Now I've spoken a lot. I'll shut up.

Joyner: 42:29

I never want you to shut up. Just so you know, when you're when you're speaking and when we're making these podcasts, I'm pretty rapt with listening to what you have to say. And it always inspires sort of my next thought, which is Trust. The last thing that you were talking about... One of the the considerations when you're working with nonspeaking kids who don't have a reliable mode of communication, is that you don't get to know as a parent, as a caregiver, often we don't get to know why.

Joyner: 43:14

Right? Our kids will often let us know what they need or an approximation of what they need by doing something for themselves or refusing to do something. Right? So we don't always get to know why as parents and caregivers, but, you know, refusal is a way that at least our kids can tell us "Not this. This is the wrong thing."

Joyner: 43:37

This is not the point of access for us, and we can take that off the list. You know?

Joyner: 43:42

But when I think about what you were just speaking about with A- and preschool, there had been this collective investment in making this space really accessible and affirming for him, and it was great. And then he decided he didn't wanna go anymore. And, you know, there may be some folks who would say the thing to do in that situation is to try to get him to go.

Joyner: 44:10

You know? Which I'm sure that, like, you guys tried a couple of things.

Shubha: 44:15

I know, it's like... we did do that at first! We paid a lot for that preschool.

Joyner: 44:23

But at some point, when there's a clear refusal, it's not just this day or, you know something that could shift easily... but it's like a clear holistic refusal. I think part of what it is to meet our kids' needs in a liberation framework, is that then we have to trust them, even if they can't tell us why or defend their refusal, even if they're 2, Right? Even if they have significant developmental disability. Right?

Joyner: 45:02

We have to trust them, and there's something that we are teaching them when we do trust them, which is your self advocacy is effective. And I think this is something I sometimes hear from parents who have kids with significant support needs, autistic level three, whatever you wanna say. They would say "My kid can't self advocate. My kid doesn't have a way to self advocate." And I would say universally, yes, they do.

Joyner: 45:49

And refusal is one of the ways that they do that.

Joyner: 45:57

But people who have the experience of their self advocacy being trusted and listened to and responded to will grow that skill.

Joyner: 46:08

Now, you get kids like ours Who spend a LOT of time practicing self advocacy and have a lot of needs around their self advocacy being responded to. And like it's not always easy to be a caregiver of a kid who's actively learning self advocacy and exploring and experimenting with that, especially when they don't have the type of two way communication that would at least give you a little bit of negotiating leverage. You know what I mean?

Joyner: 46:49

But it's also to my way of thinking, it's difficult for me to think of something that would be more important for us to be making a way for, making space for us caregivers, is my kids' ability to deeply integrate. "I know what I need. I'm the expert on myself. I have ways to let other people know what I need. And it is reasonable for me to expect that people will listen and try to be responsive."

Joyner: 47:27

Even if all of that is non linguistic, even if all of that is non symbolic in its nature. I want him to know that in part, not in full, but in part, because if he has experiences in his life where people are not responsive, where people don't listen to him, where people do not respect his agency, his bodily autonomy, etc. I want his experience of that to be like, "That's fucked up. That's wrong. That shouldn't happen. That's not normal. That's not normal to be treated like that. It's not normal for me to be treated like that."

Joyner: 48:03

Even if that's an internal process, but also it makes it more likely that he will do something that could indicate to us that he's being treated by someone in a way that is not normal to him. And if his norm is "People treat me well, people respect me, people listen to me, people help me make my own choices", then something different from that would be the thing that would create some sort of behavioral alert or some sort of change in his baseline that would give us some indication that we need to be taking a look at everything that he's experiencing. You know? This gets us a little bit away from meeting needs, but it is around meeting needs of access to self advocacy. Right? Like, that's a need.

Shubha: 48:57

Yeah. That's super deep. Well, and it's also ... there's two paths, but I wanna take it in one...

Shubha: 49:02

Because it also gets to are other people around him meeting his needs or not and / or care to meet his needs.

Shubha: 49:10

And the first thing I wanted to say in response to what you said is just to, like, just to do the "Let's be real parenting is hard" part. I wanna make sure people understand that when we were both laughing about our kids' self advocacy, I think we're both laughing because we were like, they're constantly self advocating and we're constantly listening to them all the time. And it's hard.

Shubha: 49:32

Like an example, I think in the past month, we've had two speech therapy sessions... because we only have them every other week... and we have to go to the therapist's office. And we've had to skip both of them because A- hasn't wanted to go and we don't make him go. And as a parent that's hard because... it would be hard for you... in our case it's hard because we pay no matter what. So we're like, this is a sunk cost. We've just spent, you know, $250 to not do therapy. (That's not totally true because our therapist does virtual makeups) It's, you know, we've had to adjust, because I think that's a really hard thing for parents. You've paid for a thing and your kid won't go to the swim class or whatever. And we've had to say, "These are sunk costs."

Shubha: 50:17

And so we ate the cost of six months of preschool. That really sucked, actually. I'm still a bit mad at the preschool. But at the end of the day, like you said, the trade off is that now our kid knows that he's trusted and listened to, and that is priceless. And we were gonna pay for this damn speech, I shouldn't say damn speech therapy, our speech therapist is incredible. But we were gonna pay for the session either way, you know?

Shubha: 50:43

So fine, we've now paid for the session, supported a cool speech therapist, and our kid is self advocating.

Shubha: 50:49

And then, yeah, the part around bodily autonomy brought up the reality, which we probably don't have time to get to. But that's obviously a very, very hard one because we both support, and I think both you and I won't get into details, but we support that for our kids. And also, there are still times where I breach often the bodily autonomy thing with my kid, and I still have to figure out what to do about that, but there are times where I feel rightly or wrongly that the thing that he needs to do with his body but he's not willing to do is essential for his safety, and so I do it. But I'm gonna have to problem solve around that the older he gets. But the thing that you said made me wanna share ... Two examples of ways that we've tried to support him in self advocacy that have really worked in ways that were different than we thought.

Shubha: 51:46

And so one example is... I forgot about this until just now.

Shubha: 51:50

I think when he was like... I don't know ages, I don't know time... maybe he was 3 or 4, maybe he was 4... He had this phase, like a pretty long phase, and I won't get into why, (I think it's due to the IEP testing), where he didn't want to go to new places. Like, didn't want to go into new buildings, into new places, whatever.

Shubha: 52:11

And so there was a time where, like, he didn't want to go. And so during that time, he didn't want to go into the subway. But we thought he would really like the subway, but he didn't wanna go in. And of course, we weren't gonna force him to go in. And we have self direction as well, but it does not pay as well in New York as it does in Minnesota, so we could cover taxis.

Shubha: 52:32

But we had this idea that maybe part of the reason it's hard for him to go into somewhere new is we haven't equipped him with the tools of being able to tell us that he doesn't want to be there. Because he's non speaking, what if he goes into it... Like, I was imagining he might feel like, what if I go into a place and I don't like it? Like, then what? I'm stuck.

Shubha: 52:53

And so I'm probably getting this wrong, but I think in that moment, we were in front of a subway and just off the cuff, I started telling him all the ways that he could tell us no. I wasn't telling you we had to take the subway, but I was like, "Hey, we're gonna go down this... if if you want... w're gonna down this elevator and when we get to the bottom, if you don't wanna be there, you can turn the stroller around and we will leave." And then I sort of walked him through, like, and then we'll go through a turnstile, and if you don't want to be there anymore, you can turn the stroller around and we will leave. And I just did that with like three or four scenarios, and then he, we went in the subway. Like, then he was fine going in the subway.

Shubha: 53:31

And then we made a little book.

Shubha: 53:33

We use an app called Pictello, where you can it's just an app where you can make really quickly, you can make little photo stories or video stories. So we made a book about all the ways he could say no,

Shubha: 53:44

And so we literally, we were like, you can turn your stroller around, you can cry. Like nothing was off the table. Like you could cry and scream. We weren't saying you can't cry and scream. We were like, you can cry and scream.

Shubha: 53:54

You can say no, you can use your AAC app to say no, you can go to the door and touch a door handle and then we'll know that you want to leave.

Shubha: 54:01

So we made this whole book about it and I think that really helped. Like after that, he actually started going into new places.

Shubha: 54:10

So that was, an example where we were able to meet like... In that case, his need was the need to be able to change his mind about something, you know. But he didn't have a way to tell us if he changed his mind. And so we were like, you actually do have a way. We'll listen to you.

Shubha: 54:27

And I think in the Pictello on every page we say, "and Amma and Dad will listen to you. Amma and dad will listen to you." Like, every page we say that, we're like, you can touch the door handle and Amma and Dad will listen to you. And then another example recently that I just shared about, this is like a little bit more into the nuances of why. And to me, it's an example of what you said about the importance of trust, even if we can't figure out the Why right now.

Shubha: 54:57

So this past summer, we were visiting Minneapolis, and we rented a car. We don't have a car, but there we had a car. And I still have no idea why, but we would have this experience where we would drive to somewhere, somewhere that we knew he would really love, like the lake. He loves lakes. And we would get to the parking lot, and he would just get really mad that the car was stopped, and he would not get out of the car, and he would sit in the car, and we would sit in the parking lot. And we would sit there for, like, an hour. And, you know eventually, Daniel would just be like, I'm gonna go swim in the lake, and I'd be like, that's fine. But he just wouldn't get out of the car. And we didn't make him, but we did try to go places every day, because this was part of the reason we went to Minneapolis is so he could go swimming in lakes, which he loves.

Shubha: 55:44

But this was also anywhere. It wasn't just lakes. We would go to ice cream stores. He loves ice cream. He would not get out of the car. Like, whatever it was, he wouldn't get out of the car. So we made this Pictello, and basically, the Pictello is us saying to him, we noticed you can't get out of the car or you're not getting out of the car. We know that you like the places. The few times you have eventually gotten out of the car, you have a lot of fun. And we're really curious, like, why you don't want to get out of the car. And we really care. We really care about why you don't want to get out the car. And then I share a bunch of examples because I'm guessing.

Shubha: 56:20

So I was like, maybe it's because you didn't know where we were going and you wish that you would add a map. Or maybe it's because you like the car because the car feels nice and you just don't want to get out of it. Like, you know. So I had like maybe four, like maybe these are the reasons why. And then at the end I say... I told him that he could tell us why by showing us that page in the Pictello, so that way we would know that was the reason why. And then basically, I end it with just like, we really care and we wanna know. And so I gave that to him.

Shubha: 56:54

I didn't really think that he would show us the page, but I was like... We've never even tried to explicitly give him a way to tell us why, other than the fact that he has symbolic based AAC. But just like Foxy, he doesn't use it in that way. So I was like, let me at least give him a way and instruct him that this is the way. And so what happened is he did watch Pictello. He never told us the Why, but he watched the page about how Amma and Dad really want to know why. He watched that page over and over again.

Shubha: 57:29

And so to your point, what I hope happened is that that really amplified his feeling of trust. Like, "Here are these people that actually really care about why I didn't wanna get out of the car." And, like, if that's all that came out of this, is that we have a 6 year old who's non speaking, who can't tell us why, but feels like people really WANT to know why, that is, like, amazing. You know, that's more than anything that we could have hoped for.

Shubha: 58:02

So that was my that was my other story of why, of finding out why, but not actually finding out.

Joyner: 58:09

I wanted to tell a story that has kind of a practical well, I mean, practical insofar as, like you said earlier, Shubha, what works for me and my kid and my family is not gonna be what works for another kid. I think it's more about giving ideas of the kinds of things that a a person ... We're allowed as parents to explore these nontraditional ways to support our kids.

Joyner: 58:37

So this is a true story about Foxy. A couple of years ago when we were living in an apartment, we had been living there for several years and kind of suddenly, Foxy, I think he was 8 at this time, developed a fear of our microwave and our oven. He did not like the timers. He did not like the beeping. He did not like the microwave being on and making the and the light and the spinning plate.

Joyner: 59:17

He did not... he was fine with the stovetop. I think I don't know why, but he did not want us he did not want us at all to use the oven or the microwave. And anytime anyone would use these appliances, it was very distressing for him.

Joyner: 59:36

But the part that was more sort of like pervasive as far as regular day to day life was that he was so concerned about these appliances and monitoring their use, that he would not go out of eyesight of these two appliances. So you can imagine an eight year old kid who can't go anywhere where they cannot see your microwave and stove for months, literal months. What do you do? Well, I mean, when we think about meeting the most immediate needs... now Foxy uses incontinence products, so he doesn't need to access a toilet.

Joyner: 01:00:24

But we no longer have access now to a bath shower for months.

Joyner: 01:00:29

Because Foxy will not go into the bathroom Because to go into the bathroom would be out of line of sight, right, of these appliances. Foxy had been sleeping in a bedroom with a parent. I will say Foxy's needs pertaining to safety are such that he cannot sleep in a bedroom by himself. He has never slept in a bedroom by himself.

Joyner: 01:00:52

He always has a caregiver in the same room with him overnight for safety supervision. So that had been one of the bedrooms at our apartment that he slept in under supervision of an adult, but now he won't go into the bedroom because he can't see the the kitchen appliances. So we had some kind of immediate day to day needs that we had to figure out. And, you know, again, I feel like the most typical response if this happened with an 8 year old autistic kid who doesn't have communication, right would be to bring in a behavior specialist and figure out, you know, how we're gonna use some sort of behavior modification strategy to get Foxy to go into the bedroom and into the bathroom and, you know, stop being so upset about these appliances.

Joyner: 01:01:48

And I will also say, while we did not go that route and we would not go that route, we did not stop using the appliances. We did try to cut down, you know, not use them unnecessarily so that Foxy's nervous system could have more breaks because this was really distressing for him. And we did provide him with direct support. So if someone was gonna use the microwave, we would stand by him. We would be soothing. We'd rub his back, and we'd say it's almost done and those kinds of things to validate and support his difficulty. But we didn't think it would be good for anyone involved to just stop using these appliances completely, you know, to accommodate him. But what we did do was bring a mattress into our kitchen so that Foxy could start sleeping in the kitchen so that if he woke up and he needed to see these appliances, he could and go back to bed. Which meant a parent had to sleep on the mattress on the kitchen floor too because, right?

Joyner: 01:02:53

Maybe more notably, we bought a portable bathtub. It's like vinyl with a PVC pipe frame, so it collapses flat. And we would fill it up every other night. We have a kid who's fine with baths, but we'd fill it up every other night on our kitchen floor using the kitchen sink and bathe Foxy in this portable bathtub. And then we actually had to buy a bilge pump. It's like a bicycle pump with a long tube on it. Because if you're if you think about this bathtub that fits a big 8 year old kid, you can't lift it to dump it. You know? So you have to be able to pump it against gravity back into So the kitchen It was like arm day every time we had to make it.

Joyner: 01:03:44

And while we had these immediate problems handled, we also did really gentle child led exposure with the bathroom. So it might be like

Joyner: 01:03:58

"I got your favorite treat snack", which I think at the time was like sugar donuts from a local grocery store, and it's on the toilet. Go grab it. You know what I mean? If you got to the door and you really didn't wanna go in, we were not withholding this snack.

Shubha: 01:04:14

Yes. Right. Right.

Joyner: 01:04:14

Yes. We were like, "Oh, here you go." But it was just sort of like, interesting things can we set up in the bathroom that he might run-in and then he can run back out, you know? Either to check it out or to grab it or whatever. But almost like we felt like we needed for him to have a lot of experiences of his body going into the bathroom and and being safe.

Joyner: 01:04:38

And then and then going back to his, like, watchfulness of these appliances. It took about six months.

Joyner: 01:04:46

And then, you know, he was again able to go in all the places in our apartment. He is still a little bit suspicious. We live in a different place.

Shubha: 01:05:01

Yeah, we should be suspicious!

Joyner: 01:05:07

But not in a way that has any sort of impact on our our regular day to day life only to the extent that, like, if he's in the vicinity of the microwave and someone's using it, sometimes he'll wanna look over and just check that everything's okay. Totally reasonable. But it's wild because as Mischa, my wife and I, we're figuring out how to meet these needs... the need for a place to sleep, the need for a place to bathe. Right? If you can't go to the places where those are happening, it didn't occur to us to do anything other than really what we did.

Joyner: 01:05:47

Then I will share that because of the intensity of this experience, I wondered whether it might be indicative of a diagnosis of OCD. Foxy doesn't have a diagnosis of OCD, I wanted to consult with a psychiatrist and do an assessment to see if that seemed like a fit for a diagnosis in addition to the diagnosis he already has, mostly just because there is substantiated medical management for OCD. And if that was a diagnosis that was appropriate, I wanted to learn about whether that would be a good thing to try for him.

Joyner: 01:06:35

And it ended up not being... he didn't get that diagnosis. But the reason I even bring that part of the story up is because the psychiatrist that we consulted with and who did this assessment for us, who is a very established psychiatrist for kids with high support needs autism in my state, said during this, "Most parents would not be as accommodating of their kids as you are with Foxy." And it wasn't a judgment. It was almost like, at least how I took it, it was almost like she was saying it to say that, what I would typically recommend to a family is probably not going to be interesting to you because you're willing to do so much more accommodation.

Joyner: 01:07:27

And the quiet part, the part that wasn't said, Shubha, that I think is really important is it's not gonna be interesting to you because you're willing to do much more accommodation.

Joyner: 01:07:39

And the quiet part, "My advice is for families to tell them how they can bypass needing to accommodate their kids." Right? And I was just like, that's the medical model. Right? They will give us all these things... when we think of behavior models and stuff like that... they're often for the parents and the caregivers so that they don't have to accommodate the kids.

Joyner: 01:08:03

Which, I mean, it sounds like I'm being really judgmental and critical. That's not my intent. It's to say that like, did anybody tell you that you can just get a portable bathtub and put a mattress on your living room? Why wouldn't parents choose that? Because I'm literally over here thinking, like, the other option for us would have been to physically restrain Foxy in water to try to bathe him and physically restrain him in bed all night every night to keep him in a room where he doesn't wanna be.

Joyner: 01:08:35

And not only is that not what I'm going for at all as a parent ethically, like, that sounds like also a lot of work. Like, that is a lot of physical labor to bodily keep somebody in a place they don't wanna be for half of the day, like half of every twenty four hour day. Like, I don't wanna do that and neither does my wife physically, ethically, operationally, like it doesn't make sense.

Joyner: 01:09:00

Like, it makes bilge pumping out a portable bathtub like nothing. Right? So I'm just like, what are these?

Joyner: 01:09:09

And you and I have talked about this, what are parents doing instead of this? And when I conceptualize how much work... I'm like, oh, maybe I better understand why some parents are like, this is awful. This is the worst.

Joyner: 01:09:25

Right. Yeah. Because if I was trying to restrain my kid in a bedroom to get him to sleep in there, I would think it was the worst too. It would be the worst. You know?

Shubha: 01:09:34

I mean, and this is, like, even with the school thing, we're not high and mighty about A-. A- is very big and very strong, and, like, honestly, if he was a small kid who was not as strong, we probably would have just physically forced him into the preschool. It's not that we're some really ethical parents. We were like, this seems impossible. Someone's gonna get hurt if we try to physically make him go into the school. I guess we just can't. So I think like, our ethics came later. Our ethics came because we were like, "Wait. What do we do in this situation? There's nothing we can do. Okay, now we have to figure out, you know, another way."

Shubha: 01:10:15

Like, I don't know. And I hope that we do another one of the podcast episodes I eventually wanna do is about Collaborative Problem Solving. Which is sort of like a framework of parenting, but you and I have both said it's sort of, I think it's a framework that every parent of a kid with high support needs is already doing. It sort of adds a framework where you're like, "Oh, there's a word for the way that we're parenting." But a lot of what we just described is that.

Shubha: 01:10:43

And the reason I say it is because I think there have been so many things, not everything, but there have been so many things with A- where we have these challenges and what we needed to do was wait it out. And that's what you did. You wait. I mean, you didn't JUST wait it out. You waited it out with a few, like, let me try, you know, getting him to feel safe in another space. So you weren't just waiting it out.

Shubha: 01:11:06

But like, there have been a shocking amount of things where we were like, I guess this is just A-'s need, and we're gonna figure out a way to accommodate it. And then like a year later, he suddenly is like, I don't know... like he now wears winter hats and winter gloves. And we're like, "Oh, that just happened." You know, we went years finding out all sorts of funky ways of making sure that it was possible.

Shubha: 01:11:32

Then one day ... Of working around it, the fact that he could not wear them, which is common... But then one day he was just like, "Cool. Hat. Love it."

Shubha: 01:11:42

And we were like, "Oh, that's surprising!" So yeah. Not that's not true for everything, obviously. Not everybody gains all skills. But certainly when you're 6, there's a hell of a lot of skills you're still gonna be gaining.

Shubha: 01:11:56

Yeah. And I wanted to, like, I had said that I wanted the podcast episode to be under an hour. I think it might we might be just there. But the last thing I wanted to say... because something you said, I was like, Yeah. I don't think we have a lot of we don't have any time to talk about competing access needs, but, you know. One question that I grapple with, of course, is that A- has needs that sometimes intersect or conflict with the needs of strangers, right?

Shubha: 01:12:24

It's one thing for me and Daniel to be like, "Yeah, we can put a mattress on the kitchen floor." It's another thing if there's a need and he's out in the world, and then there's another stranger who has another need.

Shubha: 01:12:36

And so like as a simple example, he is outside and he makes a lot of noise. He vocalizes a lot whenever he's happy, which is all the time, so there's a lot of joyful vocalizing. And that sometimes has bothered other people, to the point that one time I got assaulted by someone on a subway. He threw water at my face because he was telling us to tell A- to shut up, and I basically was telling him to shut up, which I've learned in retrospect, I should just ignore people because it doesn't work, and then you just get assaulted. But anyway, and then he assaulted me.

Shubha: 01:13:17

But I think we could talk more... this relates to the medical model. I think we live in a world where adult, where in general, adults feel like their needs take precedent over kids', but especially disabled kids. And so, yes, we have, so in my mind, I get so mad because I'm like, "Yeah, we have competing access needs, but this kid is 6 years old and you're 50 or however old you are, 30. You are a full grown ass adult." And if we talk about who can access what they need... You are an adult. If you're around somebody, a 6 year old, who's making a noise you don't like, you could put on headphones, you could plug your ears, you could walk away, or, you know, that adult might also be disabled.

Shubha: 01:14:05

Often people will be like, "Yeah, but maybe the adult is neurodivergent." And I'm like, "Okay ..so they can find a way to regulate themselves then." And if they cannot regulate themselves at 40 or 50, why do they think my 6 year old needs to be the one who can regulate himself? He's 6. You are an adult. Like, we're talking about competing access needs between an adult and a child.

Shubha: 01:14:30

So, like, figure it out. Figure out your own way of dealing with it. If you can't, then why do you expect my kid to be able to?

Shubha: 01:14:37

Like, and I know that won't last forever because A- is only six, but we have time before he gets older to have him figure out how to regulate or whatever it might be. How to change, you know, what his way of accessing his needs might be. But that's how I feel. How I feel is very mad at the number of people, grown ass adults, who have yelled at us, called the cops on us, whatever.

Shubha: 01:15:04

And I am like, if you are unable to hold back, why do you think the 6 year old is gonna be able to hold back? So that's my short answer when I think of these competing needs is I think child, like trumps, (I don't like using the word trump), but child trumps adults. And that is that that's my opinion, and I'm sticking with that.

Joyner: 01:15:27

I also think what you talk about, Shubha, is really profound because when I also think about the parents really struggle with, well, "I don't wanna give my my kid the the bath in the portable bathtub with the bilge pump and the and I don't want to have a preschool plan for my kid that then has to change in the middle of the year on my kid's whim, and I don't want a mattress on the floor in my kitchen. That's my kitchen!" You know? When I think that this buy in to the idea that there is one way to be a person. Right?

Joyner: 01:16:11

There's one way to be in the world. And that everyone should try to get as close to that as possible. And that extrapolates to there's one way that parenting is supposed to look, and it's YOUR family life and if your kids needs can't conform to what parenting is "supposed to look like", then you got a raw deal. Something bad happened to you as a parent that you don't get to access this, like, good, right, normal way of parenting. But we see through what you're describing with competing access needs that the idea that there is a normal way to be a person, a normal way to be a parent or have your parenting experience go, a normal set of needs for kids to have at any given age is actually really, really harmful because it is the idea of everybody just conforms to normal. That's the plan.

Joyner: 01:17:13

That leaves a 30 or 40 or 50 year old adult with no skill set to identify and make a plan of action and then take action to meet their own needs. And that's why that adult, disabled or not, would norm putting THEIR access needs onto a six year old disabled nonspeaking child.

Joyner: 01:17:38

Because all they were ever taught is Be Normal. And now they don't have a different skill set. So in some ways, the way that you and I and many others choose to engage with their kids around meeting needs might seem on the margins or kind of fringe or weird or unusual. And by the numbers, it probably is. I mean, that psychiatrist did tell me that our family was an outlier in terms of how much we would accommodate our kids' needs. But it is also what I would argue is societally needed for the kind of future that most of us want for humanity. And to just bring it back to Minneapolis, which is still ... rent is due in two days here. I know that when this airs, we're gonna be in early March, but it it is still an absolute 100% crisis here in Minneapolis as of February 26... But the ways that we are finding to support each other are not normal.

Joyner: 01:18:51

They don't exist within the norms that we were all trained to aspire to. We are having to be incredibly creative. We are having to be incredibly resourceful. What Minneapolis is doing for Minneapolis right now is a parallel analogous equivalent to putting the mattress on the kitchen floor and putting the bilge pump bathtub in the kitchen.

Joyner: 01:19:16

It's like we said in the previous episode, this is the need. We're gonna meet it. We are not using a schema of norms.

Joyner: 01:19:25

We are using a schema of actual needs, actual resources, and what we can make together out of that. So what we're modeling for our kids, and hopefully maybe modeling for others through talking about it, is the same stuff that Minneapolis is using to uplift and save itself right now, and the same stuff that lots of people need to be able to do.

Joyner: 01:19:47

This allegiance to the norms has to go because it's literally killing us as a species. That being normal is more important than anything else. Being normal can't be more important than survival. Being normal can't be more important than relationship. Being normal can't be more important than your own personal set of values.

Joyner: 01:20:08

It just can't. It's not sustainable.

Shubha: 01:20:10

Mhmm. That was really important. Thank you.