A Conversation with Nefertiti Austin About the Diagnosis That Changed Everything

Debbie:
Hey Nefertiti, welcome to the podcast.

Nefertiti Austin:
Thank you so much.

Debbie:
I’m excited to talk about your new book and just your story and get into it all. So we’re going to actually just dive right in. You and I, we’ve known each other for a few years. We’ve talked about our kids and about parenting. And we’ve talked about your book, Motherhood So White, where you shared your story of becoming a mom through adoption as a single black woman. And now you have a new book out. I think it’s coming out right as this episode drops. It’s called, She’s Just Spirited, Parenting a Neurodivergent Child and the Diagnosis that Changes Everything. And so I’m kind of wondering as a way to kick us off, if you could share a little bit about how you came to realize that neurodivergence was going to be a significant part of your family’s story as a way to kind of then share why you ultimately decided to write this book.

Nefertiti Austin:
Well, when my daughter, okay, the first clue, but I missed it, should have been when the social worker handed her to me and said, she’s gonna have all the labels. But I really dismissed that. And also by that time, I was almost seven years into parenting, so I kind of felt more secure. As a parent, I had grown with my son and I felt like I had some tools in the toolbox. thought, yeah, okay, whatever. slowly but surely that prophecy did come to pass and I finally recognized it in kindergarten. That was when my light bulb went off that, there’s something more at work than a little girl who’s just a whirling dervish and is happy and fun and smart, but also unable to regulate herself.

Debbie:
Yeah, and I kind of can’t believe that all the labels was one of the first things you heard about your daughter. So I’m wondering when you heard that, you really were just like, OK, but I’ve got this. I’m a seasoned parent.

Nefertiti Austin:
Yeah, I really just kind of thought, you know, the timing of it was probably not great. And at that point, I was very emotionally invested in, I am going to be a mom for a second time through adoption. This is my son’s sister. She completes our family. So I didn’t take it as something that’d be detrimental, you know, wasn’t like a danger sign, but I heard her. And then that moment, really wasn’t anything I could or was willing to do about it. I wasn’t going to be like, well, never mind, you keep her. I wasn’t going to do that. So I just kind of went with it and we went on about our day, about our lives.

Debbie:
And then you said around kindergarten was when you kind of started realizing like, okay, I’m having a sense of what this means. And when was that in relation to when you wrote Motherhood So White? Because it’s one thing to experience it as a parent and it’s another to say, this is something I really need to write about and share with other people.

Nefertiti Austin:
Right. Hmm, trying to think. I think when I was writing Motherhood to White, now that was originally supposed to just be a collection of essays. So I had been kind of writing that story for a number of years and, you know, way before she was conceived or thought of. I didn’t even know about her at that point. But when I was actually writing the book, I was, I think we were in the middle of that because I. feel like she was either preschool or maybe kinder. Yeah, maybe she was in preschool. And even then, like the emails and stuff that were coming, I still just thought, well, it was a big transition from her previous preschool and at the new school, everything was so free. And I just felt like she was just, just reveling, just enjoying the freedom of the new school, just to really be herself and explore all the wonderful things that the new school had to offer. So my conversations with her teacher were really about, she’s immature. She can’t do certain things, but she will be able to do certain things later. that basically she just needs time. And I think I thought, around kinder, she should be good because she will have had a whole year in this type of environment. And so as I was writing Motherhood to White, that was still very back burner. For me, like, it was kind of sort of there, but not really.

Debbie:
Yeah, yeah, that makes sense because I think it is when the demands of school start to ramp up. I mean, even though kindergarten shouldn’t be such a demanding environment, but there are expectations about the way you’re going to attend to the classroom. And I would love to talk about this word spirited, which is in the title. I think one of the first books that I got as a parent that was kind of like needing support for the extraness of my child was called, I think it was called, raising your spirited child. And that word spirited, I was like, yeah, that kind of, yeah, lively, spirited, a lot of energy, like that captured it. So I’m wondering when you were working on this book and why spirited is the word that you gravitated for, what’s your relationship with that word?

Nefertiti Austin:
Okay? Okay. wow. Yeah. Yeah. Yes. love the word spirited because I think it’s positive. There’s a lot of power in the word spirited. There’s no negative connotation because definitely, especially kids with ADHD, as they get older, the more complimentary aspects of what it means to have a child who may not be able to sit in their seat for a whole hour, it’s really not the worst thing in the world. So spirited goes out the window and then it becomes, this child is defiant, this child… just, you know, refuses to behave instead of seeing them as a person full of energy and possibility and excitement and curiosity. And so I saw her as, wow, she’s going to be a powerhouse. She’ll be a force to be reckoned with, you know, once we can tame, and not even tame all that fire, but help to shape it. And I didn’t want to start off from a negative space when describing her. And so for me, the best word that I could think of to describe my daughter was, you know what, she’s spirited. She’s just spirited and that’s okay.

Debbie:
Yeah. And then so would you tell us a little bit about when you started realizing, okay, maybe, you know, there’s something else going on here. Maybe I should be seeking out more information in the form of a formal assessment. Like, what was that process like for you?

Nefertiti Austin:
Okay. It was a conversation with one of her kindergarten teachers and we were standing in the hallway and by this time of course I’m getting blown up with emails just on a regular basis and so she says, you know, I’m asking, you know, well what’s, you know, kind of checking in, very present parent at school so, you know, I’m always around and she said, well, we’re having to redirect her and so was like, okay. And so I said, well, how often? And she’s like 50 to 60 times per day. And I said, well, that’s a lot. And so she said, you know, sometimes it’s me with her or the other teacher. And then, you know, if we switch places and the other teacher is kind of dealing with everyone else. And so I said, OK, that’s good information. Now I need to figure out what that’s about. And the teacher’s first inclination was, well, she’s young. You know, she might be too young for an assessment, it’s okay. And I said, yeah, but 50 to 60 times per day is a lot. And I can see where that’s taking away from the other kids in the class. And as a parent, if there were a child who needed that much attention, that many redirections, I would wonder like, okay, well, what is the parent doing about it? So that was what made me get on the phone and say, okay, I gotta get to the bottom of what’s, you know, what’s going on.

Debbie:
Yeah, I remember when my kiddo was probably in first grade that the guidance counselor observed my child in the classroom for a day because I was getting a lot of emails, a lot of phone calls from the teacher, but I couldn’t, I was like, I don’t really kind of get it. Like just do this or that. Like I didn’t understand. And then I got this very lengthy handwritten document that was like a play by play of what it actually looked like. And I was, it was similar, like, wow, okay, lot of redirections. Like I really started to understand what this must look like in the classroom. was really surprising to me. And for me, I felt very just daunted by the, you know, the, the, kind of the chasm between what the expectations were and what was actually happening.

So I would love to explore this idea of labels. You wrote that you were concerned about labels being applied to your child. And so I’m wondering if we could kind of start there, what your, it was a while ago now, but like thinking about what were your kind of specific concerns?

Nefertiti Austin:
Yeah. Okay, one of the biggest concerns and I think this one probably happened the earliest is her being labeled angry and for children of color, black kids in particular, you you get a label like angry, what are other things mean, stuff like that. Like it sticks, it doesn’t slide. off of them. It isn’t something that’s momentary because we all are angry. We don’t stay angry, but for our kids it just sticks to them and like flypaper and they aren’t able to shake it off. So that was like the earliest label that I really took exception with because I knew what that meant. I knew that even in the very progressive school where she attended at the time that that was going to keep her from having a leadership opportunity, to be the line leader or to be the one who gets to clean the room. So potentially there were so many things she was gonna miss out on and I didn’t want her to then embody that, because that happens with kids, you think I’m this way, so I’ll just be that way. The other issue kind of back to spirited is I definitely noticed having an older child, so the kids are about six grades apart. So I had some insight in the front row seat at how boys were treated and definitely the difference between the white kids when they were spirited and having fun and pushing because they’re little and noticing, this pass that they get that other kids don’t get. And there’s a reluctance to label them. It’s because, you know, and even with girls, she’s courageous, she’s fun, she’s, my God, you know, she’s great, she’s a hoot, the whole bit. And that wasn’t happening for my daughter. It’s just so important that adults, especially educators, because our kids spend more time with them than they do with us, that they’re very careful about how they describe our kids and how labels are ascribed. to them because even if they don’t say it to the children directly, they’re speaking with their colleagues. So then as our kids go from class to class, from the classroom to the yard, that lens, it’s different for kids who are neurodivergent and especially neurodivergent kids of color.

Debbie:
Yeah. Yeah. You know, talking about anger, I had pulled out a quote. Said, I knew her to be stubborn, even defiant, but I drew the line as a characterization of her as angry. You were shocked when the seasoned Latinx teacher would call a black girl angry. And you said, his remark confirmed that the work I was doing around supporting black children in independent schools with fellow parents, teachers, and administrators. was needed and that small words like angry lead to huge disparities in how Black children were treated in school. And one of the things that I’m so excited about your book for, for many reasons, but you also are really writing it for educators. Like that is a part of your mission as I understand it. Could you talk a little bit about that and why it’s so important that educators really understand what neurodivergent kids, especially with marginalized identities, are dealing with.

Nefertiti Austin:
That’s right. Yes. Yes. Thank definitely. Yeah, especially it’s funny, I didn’t start out necessarily for educators, but I think very quickly I figured out, know, as parents we live it and we’re experts on the things that are happening in our homes. We don’t always have all the information and we don’t always make the right decisions, but we definitely think are very present in trying to come up with solutions and find strategies and tools for our kids. And the piece that was missing is for the educators I’ve been asking around the last few years just about training. When teachers go to like a teacher’s college, like how much time is spent on special ed? How much time is spent on crafting lessons and consequences for a neurodivergent child? And what I’ve learned is that there’s very little time in the curriculum that’s built into that. And that’s so crazy because neurodivergence is so common. And this is like a huge miss. So then I got to thinking, well, if the educators are not being educated about this particular demographic, well, parents and educators, we’re gonna constantly clash. Like it’s always going to be, you know, we’ll be talking past each other. We’re gonna miss the point of what the other is trying to say. So I thought, well, if I write a book from… a parent’s point of view saying, teachers, hey administrators, hey coaches, this is what parents are going through, this is how the kids feel, and this is what we need from you, that hopefully it would be my way of just kind of bridging that distance.

Debbie:
Yeah. Yeah. And it is really surprising, you know, that idea that there isn’t much time spent for educators in learning about neurodivergence or learning disabilities like that. feel like neurodivergence as a kind of a field or a space, there’s so much more awareness and understanding in general yet. That is an area where there just hasn’t been much movement in terms of new teachers in the classroom really kind of not knowing what they are dealing with.

Nefertiti Austin:
Yeah. Yeah, and it’s a shame because, you know, most people who teach are there because they love the children and they want to make a difference in their heart. You know, their hearts are in the right place and they’re trying and they’re open. And I know they have a lot on their plate. You know, I get it. And when they have their teacher days and all that stuff, and it’s a lot of information to consume. However, It’s necessary. and it should be backed into all of their training because there’s no getting around it.

Debbie:
You know, just kind of zooming out to speaking about the way that you write this book, I mentioned earlier that I had a chance to blurb the book. I love your writing style so much because it’s so honest and thoughtful and just kind of frank, like this is how it is. Like we don’t need to, it felt so accessible to me. And You know, when you’re talking for educators, one of the things that you said in that vein, you said, parents are aware that you’re underpaid and underappreciated, but we need you to remain open and up to date on the latest pedagogy in supporting diverse learners. Our children’s lives depend on it. It’s like mic drop. It’s great. So I also just wanted to touch upon adoption, which again is a lot of what you write about in Motherhood So White, but you said that adoption added another layer of just, it was another factor that you really had to work through as you were kind of reconciling and navigating your daughter’s neurodivergence. Could you talk about that?

Nefertiti Austin:
Yeah, I thought that you know the whole nurture versus nature argument debate and I thought okay I have the same household we’re very predictable and that her route you know very I’m about a routine you know we have a routine in place there’s a of support, there’s a lot of love, there’s a lot of kindness, we’re surrounded by great people. And I really thought, oops, sorry, I really thought that if anything kind of reared its head that nurture was going to overcome nature. And so I was surprised, again, the social worker had warned me, but I hadn’t seen anything to suggest that I would be on this journey. And so while yes, yes, yes, I was warned, it was still unexpected. So sometimes, I mean, for sure, kids need routine and all the things, but that’s still no match with neurodivergence. And so that was something I really had to get down in my soul that no matter, I’m still just doing the best I can, that it wasn’t enough. She was going to need help beyond what I could give her.

Debbie:
And even that, you know, you write about, well, you have a chapter called trying, failing and repeating, which is about therapies and supports. And you wrote about how you were doing all the things you were telling all the right people, what they needed to do and following the plan. And you said at the time I was still operating under the assumption that if she could just regulate everything would be fine. and so tell us about that. realization like, okay, I’m not actually using control of this as I thought.

Nefertiti Austin:
I mean, I really thought, okay, I’m ahead of the game. It’s kindergarten. And I’m like, okay, something’s up. So let’s do something about it. And she went to a great camp that summer. I had a lot of information I didn’t have the year before. And I thought, okay, if we do X, and Z, then these other issues are going to magically go away. I just didn’t get. that it’s an endurance and takes time and it takes a lot of time and there’s so much failure that I experienced and I imagine other parents of neurodivergent children experience but we can’t give up. So it was just kind of like, okay, I thought gymnastics would do it. Gymnastics didn’t do it. On to the next thing. I thought, well, okay, we’ll get to school early and we’re gonna get these wiggles out, you know, and then she’ll be relaxed and able to engage. Well, that didn’t work, on to the next. And so there were all of these things that I kept trying to implement with great support from her teachers as well. You know, we tried as a team. Some things worked, most things didn’t last. And so that was another learning curve is that. It just goes on and on. And so now I approach things as this is the issue, one of a few issues, and it’s going to take as long as it takes for her to either agree to what we need to do and then it sticks for her. So I don’t have control over when she’s going to get it. And I think that as a very hands-on parent, Reformed helicopter parent here, that lack of control is definite. That was hard. But I got over it because I had no choice.

Debbie:
Yeah, so when you keep getting evidence daily that I have no control, I have no control, you start to get with the program. And I always say that this is like we’re playing the longest possible game here. Like as you said, it’s going to take as long as it takes. And I don’t actually now believe that there’s like a an end, like an end zone for this game that we’re playing. I think it’s just the game’s always going to be changing and we’re going to keep adapting with it.

Nefertiti Austin:
Yep. Yes, I agree.

Debbie:
I want to talk about your kind of zoom out to some of the bigger goals that you have with your book. You broke it down in such a, again, generous way, like the way that you wrote about, for example, the assessment process. Like you did, this is also a researched book. So you share your experience. You also have anecdotes and stories from other parents. but you also did a lot of research. So what was your goal in kind of breaking down these kinds of core aspects of parenting your daughter that you wanted to share with readers?

Nefertiti Austin:
Just over the last few years, I’ve been asked by people, like other parents, well, what did you do? Well, how did you do that? And then the big question is always, well, how did you know to do that? And so, you know, I’m like so much trial and error on my part. go to the ends of the internet, like on a regular basis and calling friends and asking, OK, well, what did you do? I think the biggest asset is that I’ve been very open to the process and so very open to, okay, well, we’ll try this and if that doesn’t work, we’ll try that. And so those chapters really reflect a distillation of the process. Now it’s going to be different naturally for every parent, but there are some basic things that every person will experience and certainly the assessment process, whether you go the private route or you go public or however you have your child assessed, there are certain steps that every parent will take. And I was trying to make it as clear as possible. Like these are out of your control. You can’t skip a step. That was basically what I was trying to share. so that was my thinking. How can I make this as clear and as easy and as accessible so that a very overwhelmed parent, a new parent won’t be like, my God, here’s a whole bunch of words? I don’t know what any of it means. So that’s what I was thinking.

Debbie:
Yeah, so as you were explaining that, the word I wrote down is mentor because that’s really the vibe and energy with which I think I read the book. It does feel like you’re taking these concepts, take for example, the assessment rabbit hole, if you will. You opened that chapter by saying, it would be disingenuous of me to tell you the mountain of forms parents and caregivers need to complete are not overwhelming, confusing, and at times frustrating, but be frustrated and complete the forms anyway. I was like, I just, I mean, really you, so to me, you are saying, yeah, okay, let’s do it anyway. And you do it in a way that feels, it’s just empowering because you’re kind of taking what I think can be absolutely daunting, especially for so many of us as parents have our own neurodivergence and overwhelm with those non-preferred tasks and the executive function. And you really just make it feel like, okay, I can do this. I’ve got this. And that to me is one of the biggest gifts of the book.

Nefertiti Austin:
Yeah. Yeah. Okay. Oh, thank you. I appreciate that. Yeah, I really just, I mean, you have to go through it. no getting around that. And I’m also, my daughter’s a little older now. I’m trying to teach her that as well. Like, okay, you’re frustrated. You’re gonna take a breath and we’re gonna push through. Like we still have to get it done. So yeah.

Debbie:
Yeah. Yeah. So the last chapter of the book is called Dream a New Dream. And you wrote, our children have brought a lot of fears to the surface and we’ve had to face those fears. The mirror they hold is telling us to deal with our stuff so we can help them. And I was like, yes, so much yes to that. And so I’m just wondering, you know, what, why was it so important for you to end the book on that note and really talk about that?

Nefertiti Austin:
I think that as parents, again, however you become a parent, we do go into it with some preconceived notions about what type of parent we’re gonna be, how we’re going to parent. Big ticket items, we send our kids to public school, to private school, will they get vaccinations, will they not? Those are things you really expect, and the neurodivergence isn’t always top of mind for parents, even if that… parent or the partner or grandparent or whatever may have had some neural divergence. So when it’s right in front of you, there is like the death of a dream of what you thought it was going to be. And so there is grieving, I think that gets in the way of parenting sometimes. And so we get stuck and what we thought it was going to be, what it could be if they would just, if the therapist would just, if their teachers would just. And the reality is your child has shown up in the world in the way that they have shown up in the world. And our job is just to accept them and to love on them and to shepherd them on through. And that often requires that we dream a new dream, that we have to really consider the child in front of us and figure out a way to get them to recognize their strengths. so that they can go off into the world and live their lives as productively and as happily as possible. And I just don’t know that parents remember to dream a new dream. Like it’s okay, it’s all right. this is the hand we’ve been dealt and we’re gonna deal with it. And it doesn’t mean it’s the end. Like there’s so much possibility that’s out there. So I was just trying to end on a happy note, on a high note.

Debbie:
Mm-hmm. Mm-hmm. Yes, you did. It feels very hopeful and it’s true. Certainly, it’s been a rocky road for me over the years and 21 years of parenting this kiddo, but I wouldn’t trade it. It is profoundly and I’m sure you feel the same way. Because these kids demand so much from us, it can change us in ways we never imagined possible. And I think that’s one of the most exciting parts about getting to shepherd these kids. Yeah.

Nefertiti Austin:
Yeah, I definitely agree. mean, who I was in, ooh, 2007, starting out as a parent, you know, to who I am almost 20 years later. know, still elements of that same woman having ideas about wanting to be a mom and what that was going to look like. But definitely a world away from where I started, because so much in the world has happened. And these kids have brought so much joy and curiosity and certainly challenges from here. From time to time, my daughter more so, but I’ve seen it ultimately as a chance to grow just as myself because she definitely has reshaped how I approach things and think about things, that’s for sure.

Debbie:
Well, I’m going to read the name of the book again, and then you can let us know where people can connect with you. Again, the book is called She’s Just Spirited, Parenting a Neurodivergent Child and the Diagnosis that Changes Everything. It’s out in early October. I believe as this episode comes out, it will have just come out. So check that out. And Nef, where can people connect with you?

Nefertiti Austin:
Okay. You can reach me on Instagram at IamNephrotediaAustin and it’s connected to my Facebook page. Those are probably like the best places to reach me. And I do respond, so if you shoot me a DM, I will respond.

Debbie:
Okay, listeners, so I will have links in the show notes page to those places and to both of Nefertiti’s books. And yeah, I just want to say thank you so much and congratulations again. I got to be behind the scenes and kind of follow the journey of this book coming to life. And I’m so happy that it’s here.

Nefertiti Austin:
Yes, yes. Thank you and thanks for your help early on reading early drafts and helping me get that book proposal together. That was everything. Thank you so much.

Debbie:
Gosh, so happy to do that.