Terrible, Thanks for Asking

Come Meet Drayden - Transcript

This is a transcript of a “Terrible, Thanks for Asking” episode entitled “Drayden.” The text may not be in its final form and may be updated or revised in the future for accuracy.

Listen to the episode here.

I’m Nora McInerny, and this is “Terrible, Thanks for Asking.”

People ask often how to get on the show. What to do if they have a story to tell. And like every question, there are many answers. Officially, I am supposed to tell you to go to TTFA.org and then type in your story and press submit. And absolutely you should do that. And sometimes I just meet a person. I start talking to them. They don’t even listen to my podcast. But they’re very interesting and I just ask them to come on. Sometimes Jeyca or Marcel or Hannah or somebody else from APM will meet someone or hear something and be like, “Is this an episode?” And sometimes, I’ll just be chatting with a person on Instagram about something completely unrelated to this show and I’ll have a moment where it clicks that I am hearing a story. Or I could be. 

That’s how I met Dana, who you’ll meet in this episode: Because we were chatting on Instagram for a while about a lot of things. About this dress that I bought. Let’s not name names, but it rhymes with JCrew.com. I had such high hopes for this dress. I tried it on and strangers on the Internet were telling me, “Please return that dress, Nora. Please. It does you no favors.” Kindly, they were saying it. But also firmly. Dana was one of those people. She was like, “Respectfully, return that dress. It is a waste of your money. It makes you look like you have boob bags. It’s not good.” 

Then, she and I were chatting about George Floyd, and the way internet influencers were using Black Lives Matter for likes and follows and swipe ups on their affiliate links. Ugh, it was just so cringy. And then after following her for a while, I messaged her, and I asked, “Do you think you have a story to tell?”

And she said, “I’d like to think my story is just in the beginning.” 

So, here is the beginning of that story.

Dana met her husband when she was in high school, and the two of them have been together ever since. They’re just one of those couples. They got married, they had a baby...

Dana: And we had our oldest son, and then we waited a while, and he was like, “Let's try for one more.” And I was like, “I don't want any.” And we compromised, as you have to do when you're married. And I said, “OK, well, I'll give it three months, and if I'm not pregnant within three months, we'll just take this one and we'll be done.” And he agreed. And in that first month, I was pregnant with a set of twins, which are my older set. And then when I went back to get back home birth control, the doctor laughed and was like, “Hey, you're pregnant.” Did an ultrasound, and it was another set of twins. So the second time, they didn't let me leave the hospital until I had birth control after having them. But yeah. So my twins are 11 months apart. So I have four kids that are not even a year apart. 

Nora: Dana...

Dana: Yes. 

Nora: There is no one on Earth that I can respect as much as you. That's so many humans. 

Dana: It’s a lot of human beings.

Nora: That so many who are still peeing their pants at the same time. 

Dana: It is. But it gets easier. I tell everyone that it's so much fun now. Like, the holidays are so much fun. They're crazy, and they're chaotic, and they're messy, and they're unorganized. And they're not like other people’s that we see. You know, our Christmas card is never quite perfect. But it's so good, and it's fun. And as they’re getting older, and they have different personalities, it’s so unique to see how everyone works as a team. And it's, it's just very interesting. You know, it was chaotic. And I love that they all have each other, and they're going through these life changes, whether it's potty training or learning to ride a bike or learning to write their name, pretty much all at the same time. So it's very unique to watch them learn from each other, and spend time with each other, and to help each other push each other and embrace each other. Like, that part of parenting is like where I feel like I win, because that bond is so unique. You know, they're all doing the same thing at the same time. So it's, like, neat to watch.  

Nora: You knew that Drayden was different. And you said you knew it right away. So can you tell me what that difference looked like and how you could tell? 

Dana: I knew right away. Right away. Soon as I held him, I knew something was different. And he didn't look different. He did fail his hearing test. But the doctors, you know, of course, as they do in the hospital, in any mom, they try to reassure you everything is gonna be OK. But I just knew something was different from the time he was born. And even when he was about four months, he wasn't… he was so calm. You know, my husband's family is very religious. We’re in Virginia. So some call that the South. But they were like, “Oh, God, just sent you someone he knew you needed,” things like that. And in my head, I'm like, no, no. Something more than God sending me someone calm. There was just something different about him. He had a different pace. And it was more than him not hitting the milestones, you know, because I'm not the mom that's like, “You have to do everything first so I can post it.” I just knew.

Nora: So when did you start asking doctors about Drayden's development, and what was their reaction to your line of questioning?

Dana: Well, he failed his hearing test when he came home from the hospital. So when he went for his... I think it's, like, a one-week checkup, he failed it again. And they're like, “Mom, it’s gonna be OK. This is normal. This happens.” When he went for his three-month checkup, he end up failing again. And at that time, you know, I sort of, “Hey, you know, he's not, you know, following along with his eyes when I'm in front of him. He's sort of gazing off in space.” And the doctor was like, “Oh, that's normal. Some kids, you know, eyesight and the way that they see things come in a little bit later in their ability to focus.” So I was like… okay. But mind you, I had something like a point of reference, and I sort of done this a couple of times before, so I sort of knew like, OK, we should at least be doing a couple of these things that weren't happening. And then when he was about nine months, I had took him back to the doctors. And at this time, he wasn't crawling. He wasn't sitting up. And I knew at that point, like something… something was different. 

Dana insists on some testing, but the doctor disagrees. The thing is, Dana has FOUR kids that are a year apart. Drayden has a twin sister. Dana can see what typical development is by just looking around her living room.

Dana: So then around nine months we went back. He wasn't crawling. He wasn't sitting up. The doctor said, “Well, at this point, let's go ahead and try to get him some services, someone to come out to your house. But I really wouldn't look too far into it.” And at that point is when the frustration started getting in, because normally I go to these appointments, it’s like, “Any questions, Mom?” Nope, nope, nope. Everything's fine. And I'm trying to rush out. And at this point I had questions, and I felt like the opposite was happening. They were sort of checking boxes and trying to rush me out. When we went back at 13 months, and he wasn't walking. He wasn't even bearing weight on his feet yet. And at this point, I'm beyond questioning. You know, I'm very frustrated. So I switched doctors, because the doctor didn't want to do anything. And during that appointment, it was, like, my third doctor. And the doctor goes, “Well, we hear your concern, Mom. And I don't want other doctors to think that you're doctor shopping.” 

So it sort of, like, gave me a pause because I was like, “I'm sorry, I don't know what you mean.” They said, “Well, you know, if you're switching doctors because you're wanting a certain answer, that's sort of frowned upon.” And at that point, it was very triggering for me, because I took what the doctor was telling me as if they thought I was moving around because I wanted attention or I wanted certain answers. And I was like, “I just want some type of answer rather than everything's OK when it's clear it's not.” And at first I was confused, because I didn't know what the doctor was meaning by that. 

And it was just... it was almost my turning point. I talked to my husband about it, and he, you know, he was very adamant. “Well, we have to keep saying something. Even if no one's listening, we have to keep saying something.” And then went back to the doctor. And I remember at this point, I was beyond frustrated. I said, you know, I need to see someone. He's still not walking. We’re using these in-home services you sent. And there was a... I think you say like, nurse assistants or doctor — they're basically training to be, like, a physician's assistants, and they're recording and taking all the notes for the doctor. And I guess that's how they get their experience. And at this particular appointment there was one there with the doctor. And I remember going down the list of, you know, again, what I was saying, what my concerns were. And the doctor pretty much doing the same thing. “OK, well, we're going to look at this and everything looks fine.” And I remember being misty-eyed but having too much pride to cry in there. And packing up the diaper bag and getting on the elevator. And I remember as the elevator doors were shutting, there was, like, this blond hair, blue-eyed lady, which was the assistant. And she stopped the elevator, and she's like, “Oh, I'm going down too.”

The physician’s assistant hands Dana a little piece of paper, a scrap, just as the doors open. And on this little piece of paper is a website. And this moment — this scrap of paper, this website — that’s what changes everything.

We’ll be right back.

We’re back, and Dana has just left another frustrating doctor’s appointment with Drayden. Dana goes home. She gets online and goes to the website on the little piece of paper that the physician’s assistant had handed her. It’s 2014. Blogs are big. And this is sort of like a cross between a blog and a forum. 

Dana: So I went home, checked it out, and it was just so many Black women talking about the experience of whether it was pain that wasn't being treated, birthing situations, doctors assuming they had certain insurances because they were Black, just all different type of experiences. And at that point, I felt seen. I felt like someone is hearing me, and other people are going through this, too, right? So that was like a turning point at that moment, because I knew I was explaining it correctly. I knew if she could understand, and she could hear my frustration ,and she knew what I was trying to explain, the doctors — and the doctors previous to that doctor — knew, but they chose to disregard. And at that point, when I saw all the women talking, overnight I knew I had... like this fight for my son had to be different. And I will just never forget that point. 

With all of this validation, Dana starts to see that interaction with Drayden’s pediatrician differently. It starts snapping into focus, along with so many other experiences she’s had as a Black mother.

Dana: I think for Black women, or what's been my experience for the people that surround me, when we have more than one or two children, that's when the questions start. That's when the, you know, they're trying to do the math in their head. “How long have you guys been married? How long have you guys been together?” And they're trying to put a picture together or, you know, God forbid I don't have my ring on because I don't like wearing fancy jewelry. “Oh, my God. She has all these kids out of marriage.” So it's very different for a Black woman with a lot of kids, because it feeds into a stereotype. Right? Welfare. She's trying to get a public assistance check. She probably has X, Y, Z going on. Rather than when you see a white family or a white woman with a lot of kids. It's very different. And I don't know if that's because we just show up differently or it’s because there's preconceived notions about groups of people. I think that we perceive Black women as being strong, and then once they get past the strong, then when they're angry or upset, now they’re an angry Black woman. Right. So there's only really two places. And for so long, I didn't want to call up there and be an angry Black woman. I wanted to be articulate, and nice, and kind, and friendly, and use my private insurance, and let them know I don't have Medicaid. But none of that mattered, because they saw me and they were like, “OK, this woman, she's 20-something years old. She has five kids, X, Y, Z.” And that's where they put me, you know.

The thing is, Dana is angry. Not because she’s a Black woman and that’s some inherent part of her nature, but because she sees how her Blackness has affected her son’s care, and the care — or lack of — so many other women and families like hers receive. 

Nora: What happens with Drayden and within you after you find that website? What is your next big step? 

Dana: I knew once I saw that that my approach had to be different. Right? Like, I couldn't just be articulate and polite and nice and thinking that maybe that would get me further, because it wasn't. Like, it wasn't getting me anything further than what I was doing. I had to go over people's heads. I had to step on toes. I had to show up. I had to change my approach and things. And I knew at that point that he needed me. 

Nora: How is this version of Dana at a doctor's office or making those phone calls? How is she different than the Dana before you found that website?

Dana: I think now I go into things very mindful, right? Like, I'm mindful of the power that they hold. But I'm also mindful of my own power, right?  Like, I don't have to just take whatever they tell me and just go sit down and take a number. Like, I can ask for a manager. I can go to a different practice. I'm not gonna be shamed or threatened or looked upon less because I have to do something different. I'm a lot more vocal. You know, I write emails. I leave letters. I wait for managers. And I will wait in the lobby. You know, if Drayden has been there and waiting, and then we have other families that's coming in and getting past, after the third family, then, you know, I have questions. I'm not, you know, sitting there and wondering, “Maybe, you know, they were this or that.” I'm a lot more vocal. And I've realized that they have power, but I have power too. 

Nora: What does it take to finally get a diagnosis for Drayden? 

Dana: So he got diagnosed when he was 24 months. I had to go to a private place that was an hour away and wait a month for an appointment. And they only had one that was during the daytime. And mind you, I work full-time for a logistics company. So I had to go to work, stay at work for an hour and a half, leave work, drive 30 minutes to pick him up. And then the doctor's was the opposite way. So I had to drive that 30 minutes back up. And then a whole hour up. So it’s like an hour and a half. And we were on, we were actually on a missed appointment list, so we got lucky and got that appointment. So we got there, and we’re sitting in the lobby. And at that point, I'm the only person that looks like me. Everyone else is white, in military, and has a mom, dad and grandma and kids. And it's just me and Drayden. And I think at that point, it feeds more into those stereotypes. It's just, you know, the single mom and her son. We got there. And as nervous as I was, I was ready. I was ready to get answers. I already knew in my heart what it was. I just needed it documented, because unfortunately to get help, you have to have a diagnosis, or you have to have some type of documentation. And that just goes to show, they have that power to give you that or deny you that. 

Nora: And when the doctor calls your name, and it's your turn, are you... like are your concerns being heard and what does that feel like? 

Dana: This time it was a little bit different. So it was broken up, and we had nurses do different tests. So there was... one nurse did, like, the test for his speech. One did a test for his motor skills. So it was broken up, and then at the end all three nurses, myself and the doctor got together, and the doctor was able to make some assessments. This time, it was a smaller practice. It was not the practice that I was a part of. The doctor who was in charge was Middle Eastern, so it was a different experience.

They just all, automatically, once they start saying things, they were like, “No doubt, hands down, like he's just displaying a lot of things that are across the spectrum,” as we call autism — just just a huge spectrum.” And he was hitting so many marks and he was like, “You know, it would take a first-year student to realize that he's hitting these marks and we have to do something.”

So that was very empowering, right? Going in there, scared that they had the power, and then he was, you know, validating what I was seeing and going over. So when I had that documentation, I felt very powerful going back to my practice and saying, “OK, now we have this documentation, you know, what else are you guys going to try to use to stop us?”

It just felt like the whole process was like an exchange of power. We weren't necessarily always working together. It was just sometimes me feeling powerless and realizing they have the power. And then at other times — rarely — that I feel like I own my own power. 

Nora: When did you tell your husband about the diagnosis? How did you share that information with him and how did he react?

Dana: He pretty much knew when he was younger, too. He was thrilled, like I was, to get him the diagnosis so we can get him the help. You know, we're privileged in the fact that we live in a suburban area that has money to fund these type of super amazing, best of the best type of instruction. But you need that diagnosis to get into those programs. So he was thrilled just as much as I was when we were able to get that diagnosis. He was the first person that I called. When I got in the car, I was like, I have the paper. And he was thrilled. I was thrilled. So that was definitely like a celebration point. 

Nora: I notice that you never say there's something wrong with him. You say there's something different about him. And I think that's such a powerful use of language. 

Dana: Yeah. I've always felt intrigued and stimulated by him. Like... he makes me question myself in who I am. He's taught me just to be direct with things. He doesn't get sarcasm. He doesn't get jokes. So it has to be very black and white. Like, he doesn't get, you know, if you're inferring to something, or the please and thank you of things really don't matter to him. He just needs, like, the meat and potatoes of what you're trying to get him to do. And he's just pure. He's just a solid, good human. He has no ulterior motives. He's not trying to do anything. He doesn't have the ability to lie to you. He's just a good human. And it's refreshing. 

Time for a quick break.

We’re back. Dana’s solid, good human of a son has a diagnosis, which means he can get the services he needs. And because Dana is a solid, good human of a mom, she’s already on it. She’s been on it. 

Dana: Doing my research. I had already reached out to the school. I was like, “Hey, I need help.” Our public schools start at 24 months if you have a diagnosis. So I knew I wanted to get him in public schools. We actually chose the daycare that we have them at because it was in the district of, like, the top school. They have sign language and top technology and just all type of the gurus and the specialists and the one-to-one and the best training. It was to get him in those programs, because from all I was reading, from all that I understood, the sooner we got him in, the better it would be, the more we would see the results. So as soon as I got that diagnosis, that was the first thing that we knew that we needed to do, was to get him into the public school system. 

Nora: Do you ever think about what… what would be different if you had not found that website, if you had not shifted to fight mode for Drayden?

Dana: All the time. I find myself angry, right? I find myself feeling cut short. I find myself thinking about other women that didn't have someone there for them. Who didn't have that person running to the elevator validating them, helping them be seen. Because when you're feeling like you're seeing something and then a professional that’s supposed to help you are telling you, “You're not seeing this, you're looking too much into it,” you start to believe that, right? Like, if the person that's supposed to help me, the person who… they're the professionals, they have the expertise, they're telling me that it's not this, you start questioning. “Well, is it really this? Is it not this.” And I just think about all the women, or all the families that don't have someone who didn't get that extra push, the extra fight, and who have settled, or who have not been properly diagnosed, or who have been diagnosed so much later, because Black children are diagnosed at a much, much, much lesser rate than anyone. And then a lot of times autism is misdiagnosed in the Black community as behavior issues or different things like that. So I think about it all the time, and I recognize the privilege that I hold within that space to be able to put him in these programs. Not everyone is afforded that. And it's sad that how much... where you live and how much you make determines the education and the care that your child gets. 

Even with Drayden's appointment, like, who the hell can go to something at 11 o'clock? And then when I see the military moms, they’re, you know, moms that don't work, and I'm just like, that's not the reality for a lot of Black people, especially Black women, like... that's that's not very accommodating. Or, you know, when we have play therapies and different things like that, you know, they come with a baby doll and say, “baby,” and it's always a white baby. Like, they've never brought a Black baby over and was like, “baby.” And when it's like, “Drayden brush your hair,” they’re items that don't look like Drayden’s brush, because our brush looks very much different, you know? Or, “Okay Drayden, we have to spray the baby's hair, then brush it,” it's like, we don't add water to our hair, and there's no grease in her bucket to like… so what she's trying to do, I get. But that doesn't relate in our household, because I don't spray water on Dryden's here before I use, like, a feather brush, you know? It's just those small things that you're constantly having to conform to and understand, like, “Well, this is how they do it.” You know, it's not an option to do something else, you know, and if I bring it up... but it gets tiring, like, do I have to constantly remind you that we're Black? You know? Like, is anyone going to check? Do you guys even look and be like, “This might not work”?

In 2014, when Drayden was diagnosed, the disparities in autism spectrum disorder diagnosis that Dana mentioned? Those were well-documented. The American Academy of Pediatrics had reported that 1 in 68 kids were diagnosed with autism spectrum disorder but that white kids were 30% more likely to be diagnosed than Black children, and 50% more likely to be diagnosed than Latinx children.

In March of 2020, the CDC reported that the diagnosis gap between white and Black kids was closing, but the age of diagnosis was not. And early intervention, as Dana and Drayden experienced, is everything. There is a well-documented school-to-prison pipeline for Black children in the U.S. You can Google this. They’re disproportionately punished for perceived behavioral infractions. And this starts in preschool. PRESCHOOL! The age that Drayden was when he finally got a diagnosis. Black kids represent 31% of school arrests. Students with disabilities make up 12% of students but they make up 71% of restraints and 66% of seclusions. And in a country that’s known for our police departments killing Black people, that’s a very scary combination of statistics for Dana and for mothers like her.

Dana: So I look at his progress and where he is, and then I also realize that there's a gap, a huge gap, because, you know, for three years, even this year too he was the only Black boy in his class. And I think now it's like a passion project for me because I want answers why. I think when we look at inclusion or diversity projects, those are things we need to look at, because I think that we know better, and we have to start asking ourselves questions. Like… there can't be just one Black boy in this whole school with autism. And it’s a point for me, because I see it, right? I see how easily Drayden’s behaviors could be aggression or they could be defiance or they could be labeled whatever they want to make it labeled as, because when he has a fit and he's 5 years old and he's throwing things and breaking them because he's scared, it’s easy to label that as, “Oh, my gosh, he's uncontrollable. We can't get him.” And then as they get older, then we have these police officers or whoever are in these schools, you know, arresting them, or holding them down, or macing them. So it's just… I see how things get to that point. I see at his very young age we have to do something differently. We have to start asking questions. He's had one assistant that has been Black. All of his staff have not been. And he's had amazing staff, but those are things that raise questions for me, because I go to these appointments, or I go to these interviews, or go to these IEP meetings, and I'm the only person that looks like me. And there's something to say about there, because we can't just turn our eyes to stuff. We really have to start asking each other stuff. And I think for me, even with everything that goes on, I'm more cautious about who's teaching my son, because at a certain point, for my latest pain point, it goes: “When do you stop seeing him as a cute, 5-year-old, funny little boy to now you're scared of him and he's threatening to you?”

I need people to realize that our sons are no different than your sons. And we have to check our point — at what point do they become scary or threatening, or now you're uncomfortable or now, you know, what they're doing or their body language. Because the flapping doesn't change. But when does the flapping become aggressive toward you, or you see it as a threat? I think that's, to me, is where I’m… what a lot of the teachers is like… we have to do our work, and I need to know that those type of things are important to you if I'm entrusting my son with you, right? Because I need to know, whether it's caregivers or anything, that at a point in time where I'm not around, and my sons walk into the store to get Skittles, and if the police come up behind him, you know, Drayden… he doesn't respond to his name. So are you gonna step up and say something? Because if he sees you coming, he thinks it's “chase,” he's gonna run. 

Now, my son's life is in jeopardy. Right? To me, those are the very complex things, and those are the things that frighten me, and those are the things that make me angry. Because we have the same people that are here… you know, I looked at some of Drayden’s teachers’, you know, Facebooks or social media, and I already talked to the school and was like, you know, “If you're not on the right side of history right now, you can't teach my son. There's nothing that you can provide him. You can give him a service, but at the end of the day, you don't have his best interest at heart. You don't have other kids that look like him best interests at heart.” And that, to me, is terrifying, because as a professional, you should be able to trust that. But I don't trust people with my son. I don't trust… you know, one of the goals was to be able to have him self-sufficient. I don't even think the world is deserving of a chance to even have him, because, you know, I look at so many other people, and it was just a small incident. Walking to the store. Being in the wrong place at the wrong time. And that's Drayden. Not it could be Drayden, that is Drayden. And I at that point, I am that mother, and I feel that pain. And there's nothing like seeing people that look like you, that are doing everyday things, that are being put in positions that you never wanna be in. You know, as good as he is, as solid and as funny and as caring, it’s like maybe I don't want him exposed to the world. I don't trust that officers are gonna, you know, handle him correctly, that they have the training. You know, Drayden… he is defenseless. And for me, it breaks my heart because, you know, when I see him playing dress up and playing with monster trucks and police cars and he's excited about that or, you know, he's doing the siren noise. You know, it breaks my heart because...  if they come up to him, he's not going to understand the complexity of everything that's going on. His reality and the reality of other peoples are two different things. And there's no way for me to explain that to him. And when people choose to be ignorant, or people choose to dismiss it, or people choose to make reasons for it, it’s heartbreaking as a mother because that's not fair. Right? Like, I don't get that luxury to, you know, ignore or dismiss or excuse certain things. It's like, I always have to be on the defense. I have to protect Drayden from himself and protect Drayden from the people who are supposed to protect him. And as a mother that is a very stressful, uneasy situation. Any mother of Black children. Then when you throw autism on top of that, which is not something that people talk about, is not something that's, you know, widely known and it's very stressful, it's very hurtful, and it's frustrating. And I see how people get to the point of just being like… it just… the fear turns to frustration that turns to anger. I know the feeling of being ignored, of being dismissed. I know that feeling. And it's like, I feel like that's a part of me and Drayden’s journey that I took in the beginning. And I'm here again.

Nora: How is where you are now… you're here again. But how is it different this time?

Dana: This time, it's like I'm ready for it, right? Like, I know what it's like and I'm here for the fight. I'm not afraid of it. And I know it's bigger than me. And I know if I make space for Drayde, that makes space for a whole bunch of other little Black kids coming behind him.

And we just have to make that space, hold each other accountable, have uncomfortable conversations, question our own beliefs. Look at numbers. Look at numbers. You know? If there's 400 special needs kids and you have three Black kids, something's not right. And when we get the privilege to look over those things, those are things that come to me, because that is me, you know, also it shows me my privilege, right? And then that doesn't feel good. Like, seeing your privilege is a shitty feeling. It does not feel good. But it also inspires me to do something about it. You know, I can't just take, take, take, like I have to make a way and I have to speak up because there's going to be people behind Drayden. And there was people before Drayden who didn't have the space.

Nora: That's, I think a really heartbreaking thing to think of, too, is that autism isn't new. And it feels like stolen potential, like... and not even just, like, accomplishment potential, but just like the potential for having, like, a good and full existence. Like you said, for him to just be for these people to just be to just exist and, like, take up the space that they were meant to, not to try to reform them into, you know, other versions of themselves, but to let them exist. And it feels like a whole lot of robbery. 

Dana: It is. You know, I... it is. And it leaves me, you know, it just leaves me… it leaves me angry. Because I just feel like at some point someone has to do something different, right? You know, even when I go and I look at the support things, it's like we're always the only one. But I know we're not the only ones. You know, I'm in these support groups or in these mom camps, or these PTAs and I'm the only Black mom. Drayden’s the only Black boy. And that presents a problem. You know, when you're the only one and all the time it gets lonely. You know, feeling defeated. And then just put being Black on all that. It's scary. It's heavy. It's not fair. It makes you angry. But there's such a beauty. I love my people, and I love who we are and what we have, and I know we can make it through. I'm constantly inspired by Drayden. He hasn't let me down yet. He's been, like, the best partner to ride through all this with. And he makes it so worth it. Like I said, I completely won. He's truly just the best. He's... he's amazing. 

When I asked Dana to be on the podcast, she said that she’d like to think her story is just in the beginning. And it is. Drayden’s story is just in the beginning. That’s actually what makes it important. Because what is the use of waiting to tell it? Our perspective shifts over time, but there are plenty of cases where we don’t need the perspective to change, we need the facts to change. We need the set, the setting, and the entire structure around our story to change. And waiting — until there’s a different story to tell, until things are different — what would that accomplish?

We think of all of these systems as immutable or mystifying in some way. We didn’t build them ourselves, so how could we impact them? You do it within your own sphere of influence. You become the PA who runs to the elevator and hands that piece of paper. You become the person who does something. Who says something.

Dana: I think we have to look at systems. I think that's really where we're gonna see the biggest change is we have to look at systems. We have to look at labels. We have to look at individual cases. We have to see, you know, if they don't qualify for a certain program or they can't get to a doctor, how can we show up? How can we help them? If you work at a school, if you're a guidance counselor, you know what autism looks like. If you're seeing something like, “Hey, you know, I know you're labeled as, you know, behavior or defiance,” but maybe raise that question. It takes a second to go ahead and jump in and say something. I just think about that assistant that took two seconds to jump up and do that, like, how it shifted my life and my narrative and how I view things. I think we just need more people to jump up and say something. I think we have to question things when it just doesn't seem right, you know, and then we just... we just have to dig, dig and just look. I think it's a lot easier than what we make it seem. We don't have to start at the top and take the scoreboard down. We can just start at a very basic, basic level. 

Like, maybe next year, maybe the goal will be to have three Black kids in a class, you know? I know it sounds wild, but it's like maybe three instead of one. Or, you know, field trips. Let’s not go to, like, plantations to run around because... when I'm chaperoning, and we're running around in a dirt field, it doesn't feel too warm and fuzzy to me. So it's just those type of small, small things that we have to check ourselves. We have to check our ego. We have to check our privilege. And if it makes us uncomfortable, those are the things we need to run to. Because I'm constantly uncomfortable. I'm constantly uncomfortable. I show up to birthday parties uncomfortable. I show up to events uncomfortable. I don't know if I'm ever bringing the right side to go with the dish, like, I'm constantly putting myself in things to be uncomfortable. Drayden's forever uncomfortable. And I just want people to realize, like, there's beauty in being uncomfortable.

This has been “Terrible, Thanks for Asking.” I’m Nora McInerny. Our producer is Marcel Malekebu. Production help, as always, from Hannah Meacock Ross; our editor, Phyllis Fletcher; our digital producer, Jordan Turgeon; Jeyca Maldonado-Medina. Who else helped on this episode?

Big thanks to Dana and to Drayden.

Drayden, I hope this world deserves you someday. Dana and her kids have put together a book about understanding autism. We have linked it in the show notes below.

Our theme music is by Geoffrey Wilson of Jus Pos Bellum.

We are a production of American Public Media.