MENTIONED IN THIS EPISODE:

• Autism Out Loud: Life with a Child on the Spectrum, from Diagnosis to Young Adulthood by Kate Swenson, Carrie Cariello, Adrian Wood
• Amy Julia’s Reimagining Family Life with Disability workshop
• Amy Julia’s Live, In-Person Workshop on May 3

WATCH this conversation on YouTube by clicking here. 

ABOUT:

Adrian Wood is the creator of the vlog Tales of an Educated Debutante. She has a PhD in Educational Research and contributes to Today Parents, The Today Show, and the Love What Matters blog. She lives in rural eastern North Carolina with her family.

CONNECT with Adrian on her website (talesofaneducateddebutante.com), Facebook, Instagram, and YouTube.

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Note: This transcript is autogenerated using speech recognition software and does contain errors. Please check the corresponding audio before quoting in print.

Amy Julia (00:05)
I’m Amy Julia Becker and this is Reimagining the Good Life, a podcast about challenging the assumptions about what makes life good, proclaiming the inherent belovedness of every human being, and envisioning a world of belonging where everyone matters. Today, Adrienne Wood and I are talking about community, belonging, autism, and the ways our children have helped us to grow up. It’s a conversation I think you’ll really appreciate.

If you don’t know her already, Adrienne is the creator of the vlog, Tales of an Educated Debutante, which hundreds of thousands of people follow along to know her family’s story. She has a PhD in educational research. She contributes to Today Parents, The Today Show, the Love What Matters blog. She also has a recent book, which we’re talking about today, called Autism Out Loud. She lives in rural Eastern North Carolina with her family.

One other quick announcement before I turn to our interview. My Reimagining Family Life with Disability course is available in a couple of different ways. You could use it as an online self-paced course. You can gather a group of people and use the videos that are available online for small group time together. Or you can join me live and in person on May 3rd in Bethel, Connecticut.

So we will put a link in the show notes for more information about all of these options, but I would love for you to benefit from the content of this course, Reimagining Family Life with Disability. And now to my conversation with Adrienne Wood. I am sitting here with Adrienne Wood, and Adrienne, thank you so much for joining us today.

Adrian (01:45)
you

Thank you for having me. What a treat.

Amy Julia (01:56)
It is a treat. have followed you, I guess, on Facebook, although you’re also now on Instagram, for many years. And we actually share, guess, I don’t know that Edenton is your hometown, but it’s my hometown and where you have lived and raised your family for a long time and not a place that many people know about. So I’m thrilled to be sitting here with someone who has not just those things in common with me, but also.

some family similarities as well as just some of the things that we enjoy thinking about. So I’m sure that’s also true of many of our listeners and I’m excited to introduce them to you and to your new book, Autism Out Loud. So I thought by way of introduction, maybe you could just tell us about you and your family and how you became this person who has, you know, thousands of people kind of following along with your family’s story.

Adrian (02:50)
Yeah, well, thank you for having me. What a treat. I’ve known Amy Julia through the radar of others for a long time. So this was a nice thing for me. So I, like you, am from Eastern North Carolina. I grew up sort of in about an hour down the road as a crow flies in Nash County. And we’ve been in Edenton now for 22 years. Edenton is this tiny enclave, know, Northeastern part, kind of closer to Virginia than anywhere else.

What a place to raise a family. And I was talking to somebody about this yesterday. She said, how do you know if you should move and get more services? And I said, I don’t know. I am where I am. But when Amos was getting a diagnosis, the geneticist said, I said to her, what do we need to do for him? And she said, the best thing you can do is be PTA president. And I was like, oh, I’m already that. I was trying to see if I could get rid of doing that.

Amy Julia (03:42)
Mm-hmm.

Adrian (03:48)
That’s a fun conversation to have. But I am married to Thomas. We’ve been married 22 years. He is a criminal attorney in a town called Gates, which makes Edenton look like a metropolis and travels around. We have four children. We currently have three teenagers, which is really fun. This summer, they’re going to be working at the same restaurant sharing two cars. So I’m like ready to start a reality show.

Amy Julia (04:17)
There you go.

Adrian (04:18)
One is a busboy, one is a hostess, and one is a waiter. And then our littlest Amos is 11. He’s in fourth grade. He has autism and a rare genetic disorder called MSL2. And, you know, we’re just hanging on for the ride. I think it’s a good life. This book, Autism Out Loud, I always wanted to write a book. I’m not really a great person with deadlines.

So I had two friends that sort of kind of tricked me into it. And that was helpful though to kind of keep me on target of what we needed to be doing. But I’m really proud of it. And I don’t know if you feel this way, Amy Julia, but it seems so weird to say that about your own book, but it’s a good book. And it’s the book I wanted. I went to Barnes and Noble, I drove to Greenville, which as you know, is about an hour and 20 minutes away. And I went in there to look for the book on autism eight years ago.

and there weren’t any. There was a little section on the bottom and I bought a book about Down syndrome. That was the closest book I could find. It was called In Her Father’s Eyes. My dad, had his daughter on a backpack and it was really a good book. So yesterday I was at a Barnes and Noble in New York City and the disability section still on the bottom shelf.

like you got a lie in your stomach, you’re, you know, your face in a crab hole. But there was the word autism and there were about nine books in it. My book was not in there, but I put it in there for a picture. So we’ve made a little progress right now. If we can just get the section to come up, we’ll be in good shape.

Amy Julia (06:02)
that and yeah just to give listeners a little bit of a sense of the book it’s a definitely through three different mothers eyes is telling the story of your families but you do go kind of topic by topic through some different I think really kind of frequently asked questions although again it’s answered as a story about whether it’s education or family or siblings or the hard stuff grief joy you know and it’s really

I really appreciated it as a mother. And it’s so interesting you say that you got a book about Down syndrome, because for me, one of the things that was interesting in reading your book was that even though Penny does not have autism, I also was like having my husband read some things where I was like, ha, this reminds me of Penn when she was little. there are there is some just shared sensibilities, both in terms of, I guess, the actual diagnosis, but also just the experience of a family with being given a child who is different than you expected, which

course is true for all of our kids and yet is particularly true in our cases for Penny and for Amos. So I wanted to ask you just I guess this is two questions, but one just how do you explain autism in general? Like what do you say if someone’s like, what’s autism? Like what does that mean? And I know that means something in both a broad sense, but then also there’s this like particular child in your life who is particularly Amos and who has autism. And so I just would love for you to talk about autism in general, but also like

Autism and Amos.

Adrian (07:30)
Right. Well, I’m still learning what autism is, I think, for us and for him. We had gone to see a pediatric psychiatrist at Duke when he was about six. We were really struggling. He was having these meltdowns. You never knew what… I didn’t know what caused them. I couldn’t… I just… I had no idea what to do. And so I hauled him up to Duke and Dr. Copeland, who I love, said…

very quietly after I probably just vomited all my feelings and emotions, he said, what you’re talking about is anxiety, not autism. And that was a really pivotal moment for me. And in the book, we have a chapter on anxiety. And it’s really more, it’s honestly about the relationship of autism, ADHD, and anxiety. Their siblings is how he describes it. So we try to use research and data. have a background in educational research.

Amy Julia (08:13)
Yeah.

Hmm.

Adrian (08:27)
as well as our feelings and thoughts, you know, so we want to feel like you’re walking away with like, this is really helpful information to she gets it to. So I, I ebb and flow, you know, I think a few years ago, a post came up yesterday and it was like, I hate autism. Well, now I think I’d say to you, I don’t. think autism is sort of what makes Amos interesting. It also makes some things hard.

But trying to separate out the anxiety and the autism, know, he’s in this new, I mean, he’s funny, he is funny and he’s bright. And it’s like, how do you pull out his best traits and use them for good? How do you, I mean, I’m sure you as a mom, the same thing, how do you have him reaching his full potential and what is it? It’s like, I don’t know.

Amy Julia (09:20)
Mm-hmm.

Adrian (09:23)
But this morning, you know, he’s very against you watching the show that he’s watching. So he’s like, don’t look at the TV, you know, and you just, and my son Thomas, who’s 19, you know, cause siblings are siblings. Like there’s no, they’re just are gonna treat you the same. So my 19 year old, who’s a freshman in college will say, Oh, are you embarrassed that you’re watching Thomas the train? And he’s like, no, butt face, get out. And I’m like, is he embarrassed? Like, I don’t know if he has that feeling or not.

But there’s just so many things I don’t know, but I’m getting to know him better. I came in last night with a face full of makeup on. I’d been on television and he was like, why is your face painted? And then this morning he said, mommy, you are back to normal. So it’s like, would have never thought a year ago he would have said that.

So it’s really fun to count those successes with him that I didn’t have the wherewithal to count with my other children. I just expected this is how everybody develops and this is what life is. And then having this fourth child be very different. In the book, we have very different profiles and different birth orders. I’m the only one with the youngest. Swenson’s son is nonverbal. He’s the oldest. He’s 14.

Amy Julia (10:41)
Mm-hmm.

Adrian (10:46)
And I’ve realized I’ve met Cooper several times. Nonverbal does not mean non-communicative. I feel like he and I can have conversations. He’s funny. So just even learning, you’re reading the book and thinking, okay, well, that’s different than I thought it was. then Carrie’s child is the second of five and he is in a supported college program. So that’s interesting. You know, you’re, I think we’re kind of hitting somewhere along the spectrum for everybody.

Amy Julia (11:15)
Well, and that is a word, right, that gets kind of tossed around, not just when it comes to autism diagnoses, but even, I mean, even love on the spectrum, right? Like, so will you just explain a little bit about what that word spectrum means in relation to autism?

Adrian (11:32)
Yeah, so spectrum is this wide range of things. I guess I kind of picture a scatterplot, my nerdy self. But you know, people, common question people will say is like, why is there more autism today? When Amos was diagnosed eight years ago, it was one in 64. Today, I think it’s one in 36. And my dad, you know, if you have somebody that’s almost 80, you should have, that could be a whole podcast of talking to them about disabilities.

Amy Julia (11:59)
Yeah.

Adrian (12:00)
But you know, he’s learning too. And so it’s like, well, where did it come from? You know, and I think back in the day, people were just considered to be intellectually disabled. They used the R word back then, or maybe you have the strange quirky uncle, you know, and maybe that uncle now would have the diagnosis. So I think Asperger’s was a separate diagnosis, autism. So I think things are kind of getting,

together. We also, it’s a spectrum. I mean it is, and it’s hard. I don’t know if I love it as a mother because there can be a lot of, yeah, maybe bickering. You know, you have, I have autistic adults that might say to me, well you don’t know that he’s not going to get married or you don’t know this. And I think that can be really hard for a mom who’s changing diapers of a 20-year-old.

Amy Julia (12:57)
Right.

Adrian (12:58)
to be scolded about like there, and there’s a chapter in the book on caregiving versus motherhood and really the difference in those two things. So I think I always say you can’t tell anybody how they feel. So everybody’s feelings are valid and there is a chapter on grief. I grieved big time. It was eight years ago last week and I had lost my only sibling to cancer and I remember just feeling decimated and I thought,

Amy Julia (13:06)
Hmm.

Adrian (13:27)
had no idea you could grief something that wasn’t cancer. And I think everybody has something in their life that this is not what they planned. This was not in my playbook. But it’s a good life, right? I wouldn’t trade it for somebody else’s life. So it’s a lot of feelings to wrap your mind around.

Amy Julia (13:30)
Mm-hmm.

Well, that’s one of the things I really appreciated about the book and about your writing is just that that sense of I am not going to land on kind of one side or the other of either toxic positivity or this terrible thing that happened to my family. And I think about I teach a workshop called Reimagining Family Life with Disability. And in the last session of that workshop, we write down like as a way to start thinking about the future. We write down what’s good and what’s hard.

right now. And I wanted to ask you, because I think you do that pretty naturally, both throughout the book in terms of your own journey, and you’ve referenced some of that, but like I felt differently about it years ago than I do now. So it evolves. But why do think it matters that we talk about both the good and the hard when it comes to our kids with disabilities?

Adrian (14:37)
You know, Amy Joyer, I…

I didn’t know any families like mine. I went to private school, I lived in a small town. I didn’t know anybody with a disability. And so I, as I was, when I was an adult, I saw families like mine or like yours and I felt awe, but I also felt pity. And when I started this journey of writing, I just thought either I wasn’t listening or people weren’t talking.

Amy Julia (15:02)
Mm-hmm.

Adrian (15:12)
And probably a little bit of both. And so it’s really important for me and not a way of like whining or complaining or needing attention, but I wish I had known more like disabilities aren’t bad. Right. It’s different and it’s hard, but running a marathon looks difficult. You’re not seeing me do it, but people really like it. Right. What comes, what good comes from something easy?

Amy Julia (15:27)
Hmm.

Yeah.

Mm-hmm.

Adrian (15:43)
Nothing. I mean, we all know the people that it looks like things have been pretty easy and they’re not exactly fun people to spend an afternoon with. So I think that I, years ago when we were working on getting Amos’s genetic diagnosis, we knew there were some kind of differences with him. And I knew at 10 days old, he was different. He didn’t smile. And I just knew, you know, this mother’s instinct is really strong. And I speak a lot about that.

Amy Julia (15:50)
Yeah.

Adrian (16:13)
But I remember saying to my daughter, which I probably shouldn’t have, but I couldn’t help myself, she was about maybe six. And I said, because I was thinking like, if it’s a genetic thing and it’s gonna be passed down, you what does that mean? And wanting the children to know, you know, just all these thoughts, right? And I said to her, as she was a little girl, what would you do if you had a baby like Amos? And she said,

Well, I would be excited. And somebody said, well, she’s, you know, she’s six. And I said, well, she knows what life is like with Amos better than anyone. You know, like your family, everybody knows, you know, my son Thomas came on the other day and he said, mom, you’re really a chemist. We were talking about medications and changing things. And he said my favorite chapter was anxiety because I’ve, I’ve really seen the difference that medicine has made for our, for Amos and kind of being able to navigate.

Amy Julia (17:09)
Yeah.

Adrian (17:13)
lots of things. So I think now if I got that diagnosis or one of my children had a child with a diagnosis, you know, just life, I wouldn’t feel pity.

Amy Julia (17:27)
Hmm. Yeah.

Adrian (17:28)
I would be like, you can do hard things, you’re gonna be able to do this, and you’re gonna love this person, and this person is, you’re not gonna trade them for anybody else. And I didn’t know that.

Amy Julia (17:39)
Yeah, yeah. I agree with everything you just said, as far as just our own experience and both in terms of getting to know Penny, but also being introduced to the world of people with disabilities, where it’s not just that I’ve been able to have her in my life, but I also feel so much more open heartedness. As you were saying.

Is it Cooper who you were saying is nonverbal, but that doesn’t mean non-communicative. That’s something that I have learned. I guess I’ve just through this almost for me now, 20 years, I have come to really believe that everyone can communicate. And that is really much easier for me with the words that I’m able to speak. True. But to just assume.

competence and connection in terms of communication, even though what that might mean for me is saying, I’m sorry, I didn’t understand what you just said. Could you repeat it? Or, you know, being patient with a device that is going to tell me words in a different way than I’m used to receiving them. Or I’m paying attention to facial expressions or noises or other ways of communication. All of that is actually like an expansion of who I am. Although it

as long as I can get over my own sense of like discomfort or my need for efficiency, then there’s like human connection that actually expands who I am in this like really beautiful way.

Adrian (19:09)
Yeah, it’s funny you said that. It’s been a few years ago and I said that particularly my dad, like this has just been a… And I don’t know if you have the same story, but it has not come naturally to him. it’s been several years ago, but Amos went through a phase where we would break a lot of TVs. So he took the remote and he pinged the TV. And my dad said he did that on purpose. And he was thinking of like…

Amy Julia (19:35)
Hmm.

Adrian (19:38)
typical child does something naughty, you know? I said, yeah, he did it on purpose, but what is he telling us? And so it was like, oh, okay, you know, I mean, think it’s, you really are learning of what’s this behavior telling me all the time, hence the chemist label.

Amy Julia (19:46)
Right, what was the purpose? Right.

Right, right. Well, and that’s where I did find the anxiety chapter also particularly helpful in thinking through. And actually, there’s I don’t remember if it was you or one of your co-authors who distinguished between a meltdown and a tantrum, where a tantrum actually is a very specific, I want this and I’m not getting it, essentially. Meltdown is the context that I’ve been placed in is so overwhelming that I can’t function.

Adrian (20:16)
Yes, yes.

Amy Julia (20:24)
And being able, first of all, that’s just a helpful distinction because we use those terms, I think, often almost interchangeably. And yet also as adults, I don’t know, I rarely throw tantrums. I do feel like I melt down sometimes, you know, and and just that sense of like, you’re overwhelmed. Like there’s so much compassion that can come from that. And I loved this was either Carrie or Kate. I can’t remember one of your co-authors writing about how what she needed to do.

in order for actually behaviors at school to change was create a really orderly environment at home. It was just like we’re taking down the stimuli and it’s predictable and you can feel like safe here. And that, I don’t know, it was just really, again, helpful for me as a mom. And I think this is true of like many, kids. It’s just that kids, whether it’s with Down syndrome, with autism, with anxiety, there, I’ve said this a gazillion times, they are magnifying glasses. It’s like, you know, we just see it more clearly.

And there’s no getting around it. Like, I can’t do, whether it’s the grocery store or the whatever, without melting down today. And how can we respond to that? Not as, my gosh, you’re a bad kid, or I can’t believe you’re responding this way, but instead with some compassion and, yeah, making some different choices about how our world is ordered.

Adrian (21:43)
Yeah, that the planning. Yes, Carrie talked about how she would make sure she made his bed every day so that he could kind of get into us, which we all love, right? If you go to hotel and you get to climb in these nice clean sheets, it’s not like home too often at my house. There’s like a cat and dog and some fruit or something, you know, sand. She would like candles at the dinner table. Amos for Amos, we, you know, get home from school. go to McDonald’s. This is not

probably a kudos to my burning. He comes in and he gets like settled and he has a ball pit in front of a television. I mean, it’s like a, it’s really a scene over here. You know, and he sits in that ball pit and just, you know, kind of gets calm, right? And it’s nice to value, like those things help or days that, you you realize, I don’t know if you have this experience with Penny, but like, I know our limits are like, maybe we can go one place.

Amy Julia (22:39)
Mmm.

Adrian (22:40)
Where with the other kids, it’d be like, we’re going to go to five places. Well, you just, you sort of realize like, I have to be so aware of trying to navigate and set up the world for success. Like whenever we kind of had struggles lately, I’m like, we did too much. You know.

Amy Julia (22:56)
Yep.

Well, and I’ve been returning lately to the idea of just slowing down. And in fact, I was doing some teaching this weekend in an Episcopal church up here in Connecticut and was just reminded of that verse from the Bible where Paul is describing love and says love is patient. And just that idea of what you’re describing of like, you know what? I might have three errands I need to run. And what it means for me to do that with Amos is to only do one.

today, right? And there’s there’s a patience required. But I think that actually moves backwards towards the love that is actually being grown in you in being like, OK, I am like, essentially, it sounds so silly, but like I am sacrificing my need for whatever it was I was going to just run into CVS and get in order to honor this person that I am with today. And there’s I think something really beautiful that grows when we start actually

being patient with each other and with our needs instead of just like forcing our way through the world.

Adrian (24:01)
Mm-hmm. Yeah, and I think there’s I was saying to one of my co-authors yesterday I said, you know if there was a book I’d like to write in it and it sort of ties into that is You can’t have it all. Yeah, you know, you can’t have it all you can’t do it all you can’t be at all and you know finding that space for yourself and Modeling that I might the other night we had a speaking We had 200 people coming we were sharing the book and it started at five o’clock

And my followers particularly are a little bit older, probably later 50s, early 60s, according to Facebook demographics. Well, those people are prompt. Not only are they prompt, they come early. So I am not early. I am like, Edenton, you know Edenton. We’re like 30 minutes late is considered polite, right? And so Amy Julia had that experience with me today. And I walked in to a sea of people.

Amy Julia (24:44)
Totally.

Adrian (25:00)
30 people. One person was lying down on the floor because she was tired, you know what mean? And I was like, I can’t do this. It’s so funny. I didn’t even think about it until you just said it. I removed myself. I walked next door to the hotel lobby and I just sat. I actually did a video with my subscribers. I kind of went through the day and I walked in at five and my co-author was like, where have you been? I was like, I couldn’t do it.

Yeah, like I, I knew my limitations, right? Right. So even the last few months with this, this book and all these things happening, you know, I’ve let myself and said to myself, okay, you, you’re gonna manage children and you’re going to sell this book and you’re not going to do anything else. We’re not going to worry about the taxes are going to go late this year. We’re not, I’m not going to clean out a closet. I mean, I have a real penchant for doing things like that.

And I like drugs and stuff out the other day and I just shoved it back. I was like, nope, you’re not allowed to do that. Being kind to yourself is really important.

Amy Julia (26:04)
Yeah.

Yeah, having a child with very obvious limitations has helped me to be much more gentle with my own limitations instead of pretending that they don’t exist. One thing I wanted to ask about was your experience in Edenton, North Carolina.

It is, again, a very small southern town, eastern North Carolina. I feel a particular fondness for the place and the people there. But I also think that anyone who reads this book is going to get a sense of the kindness and community that it brings and into your life. And I think that’s a really important part of your story in particular is being connected to a community, needing a community and also

cultivating trust within that community. So I just wanted to get a sense of like, how have you done that? Because one of the things that again comes up in your book, but also in other literature around disability is the isolation that is so easy to experience. So like, how have you stayed connected to community? Has that been a challenge? Has it been easy? Like, can you just talk about that a little bit?

Adrian (27:15)
Yeah, I mean, I think I go back to that geneticist saying the most important thing you can do is be PTA president. Yeah.

Amy Julia (27:22)
We

actually speak a little bit about why, like in case there are listeners who are like, I don’t understand, like what does that mean?

Adrian (27:28)
Right. Well, I think it just meant, you you often hear there’s always this contentious relationship with school systems and there’s advocates and advocates. And I have always approached it when she said that to me. I made the decision I’m going to give twice as much as I ask. And granted, I have the time and ability and the wherewithal to do those things. So that doesn’t mean everyone can do that on their schools, but I can.

And so recognizing what you can do. So for me, it might be doing a fundraiser or taking papers home at night and stapling them and wanting the teachers to feel like they could depend on me. I think the benefit, my co-authors, very different situations. One is in Minnesota. Minnesota has some really one of the best dates for care for people with disabilities. Like they have a wait list for the waiver.

If you’re not familiar, the waiver for unmet needs for people with disabilities, we’ve been on the waiver, wait list now for eight years in North Carolina. And then my friend Carrie is in New Hampshire and her son was referred out of district to a special school for kids with disabilities, but he graduated with a diploma. Well, we have one school. We have elementary, middle and high school. And so where we are,

Amy Julia (28:41)
Mm-hmm.

Adrian (28:49)
what we have has to work. There is no plan B, there is no option C. And I really hate to say something’s best because their experiences have been really good and they might say, well, she doesn’t know because she’s never had another experience. But I think in the global, the big, big picture of the Earth from far away, what our experience is best when it comes to inclusion.

and incorporating people with disabilities in our world. Because if I want Amos to function and thrive in a world that I know I’m not gonna be here forever, how do I do that? Then he has to be in the world. We can’t just say, show up at Special Olympics one day and everything’s great. People have to experience him. I’m always juggling.

Amy Julia (29:32)
Mm-hmm.

Adrian (29:46)
And I don’t know if it’s because of what you and I both do, but like, he is first. But almost equally important to me is that his peers have a chance to be with him. You know, because it’s so important. And I will say, Amos has real friends at school. Amos is not a good friend. I would just like to say that. I have not seen him offer a lot for a friendship. He, you know, takes more than he gives, but he is…

Amy Julia (29:57)
Yeah.

Adrian (30:14)
He was real friends. He had a birthday party. I think nine from his class came. You you hear like these children have birthday parties and nobody comes, but like he’s a part of things. And as his mom, I show up at school, I bring the cupcakes. You know, I, my daughter Blair is kind of my assistant director. Evidently she’s like, he needs to be wearing under armor. You’ve got to stop putting him in those, you know, shirts because he looks like a baby.

You know, I ordered some things through my office today. I was like, that’s so cute. But Blair is going to be like, my gosh, that’s so inappropriate. Anyway, know, all the things of how you, how you fit in the community. And I think Edenton, when I realized Amy Julia, to be honest, I was drowning in fear of what this life was going to look like when I was like, he’s, he’s two. think he was, he was about two and a half when I started writing and

Amy Julia (30:48)
Yeah.

Adrian (31:11)
I’d like to say that I wanted to help the community, I didn’t want help myself. I knew I couldn’t bury any more hurt. I had been shoving hurt. I lost my brother. And I just decided, well, that’s that. And I’m just going to move on. And I was happy. I had four children and a husband, but I didn’t have joy because I had been shoving this hurt down. So when I started writing,

Amy Julia (31:15)
I’m

Mm-hmm.

Adrian (31:40)
I grieved a lot, a lot in the beginning, really for my brother, and this joy came back. And the other point of why I started writing was I didn’t, and this is not, again, this doesn’t reflect well on me, but it’s true. I didn’t want anybody in the community, in my very small community, talking about us and whispering about us. I wanted to feel like I could control the rhetoric.

Amy Julia (32:01)
Yeah.

Mm-hmm.

Adrian (32:06)
the truth out there. Like, and even when he was four months old, we had started genetic testing. I sent him a mass email and I was like, we’re doing genetic testing. We have some concerns about amos. And I remember a few people that email me back and they were like, you’re so brave to share that. And it was like, no, I’m not. just, I don’t ever want to feel like there’s pity, know, like I want to own my own story.

Amy Julia (32:22)
Yeah.

Adrian (32:34)
So in Edenton, it is really 99 % positive. And I think part of it is us sharing our story. People will say, it’s fine for you to share, but I’m private. Well, I would argue that sharing is really the only way we’re going to make progress. It’s unfortunate, but it’s the truth. I mean, we are going to have to share to help people raise themselves up to be more kind and considerate. I got a message pretty early in my journey from a mother.

And she said, I just wanted you to know my mother loves your blog. Every day she texts me and she’s like, did you see what the debutante wrote today? And she’s like, yes, mom, I have Facebook. You I saw it. But she said last weekend, and you’ll know this, Amy Joya, they had gone to the Angus Barn in Raleigh, right? Monumental restaurant and her son was 12 with autism and the Angus Barn is busy and loud, like a family birthday. And he immediately kind of started getting agitated.

The mother said, I’m just going to take him outside. And she said, for 12 years, my mother has never really connected with him. And her mother said, why would you do that? He’s fine. And she was like, it came from you. You know, talking about the little boy at Mama Sita’s while the waiters step over him while he’s rolling on the floor and nobody’s batting an eye. we’ve got to.

Amy Julia (33:52)
Right.

Adrian (34:03)
We’ve got to share and we’ve got to be out in the community. And it doesn’t mean sometimes you’re going to get burned. I got burned a few weeks ago. Somebody called the police on me because Amos was roaming around the grocery store and rolling on the floor. And somebody decided I wasn’t parenting appropriately. And we followed up and had some great conversations. And I think now that person would be like, they’re OK.

Amy Julia (34:30)
Right.

Adrian (34:31)
It’s not going to be easy. It’s not going to be easy, but it’s important.

Amy Julia (34:37)
I love that. I, again, I felt like reading your portions of the book and following along with your posts online, you’ve given so many different examples of people who have been for you and your family. And I’m thinking about, there was one story in the book where Amos was getting very dysregulated. Like you couldn’t go to basketball games in town together. Will you tell that story about kind of where that landed?

Adrian (35:03)
Well, there’ve been a few, but I think I need one. So if you grow up in Eastern North Carolina, particularly in Edenton, we live on the water. In January and February, they are wet and cold and windy and dark. I mean, when I say dark, it’s dark. Like when we moved here, I was like, where are we? Like, I feel like I’m in like an apocalypse kind of place. anyway, so church basketball is a big activity. Was it like that when you were growing up here?

Amy Julia (35:33)
Big activity, yes.

Adrian (35:34)
So that’s what you had to look forward to. You know, weekend, you church on Sunday and church basketball Saturday night. You go, you get a hot dog for a dollar. You can feed the whole family for like 12 bucks. And you talk to people and hang out. Well, we had, my husband was gone hunting and my children loved, they all played church basketball and loved it. And I didn’t have a sitter for Amos because we had pretty early on realized that there were a lot of things that we were going to have to split up to do. And that’s been very important to me.

I think more even than my co-authors of really wanting my children, and maybe because we had kind of seven years of typical familyhood, you know, I don’t know if I’m doing it right, but I just want them to have this existence where the squeaky wheel isn’t the one that always gets the grease.

I do. So we went to church basketball because they were like excited to go and we got in there and you know immediately the buzzer goes off and so he’s in the bathroom. We’re in the bathroom together. Nobody was unkind. It was like I got him some cookies. He sat in the bathroom and ate cookies and I kind of stood in the doorway and watched basketball. And then actually two years ago one of the churches like spent two hours figuring out how to unhook the buzzers.

Amy Julia (36:52)
That to me was actually the detail that just did me in where I was like, wait, they just decided not to have the buzzers because it was like, but we want Amos to be here. I mean, just that like kind of the assumption being what would be better to have him here than it would be to not. Like, I just thought that was so beautiful because you also were not on some crusade demanding that this be a place where your son didn’t have to listen to buzzers. Right. At the same time, there was a sense of like.

But we want him to be here and we want him to know he belongs here. I don’t know. I just thought that little detail of like, we’re gonna just not have buzzers felt really like beautiful and profound to me as far as what it might look like for a community to say, welcome, we’re here together.

Adrian (37:37)
And I think what I would say to a family or to a church is one, look for ways to be inclusive or restaurant. But I think we also, know, families sometimes, particularly mothers will come up to me and say, you know, I don’t have that. Well, you’re going to have to start it. You know, I had to, I shared my heart with a member of that church whose daughter is a good friend of Amos’s and he’s gone to her house for play dates and

And I revealed to her, I said, I would really like to go to church basketball, but we can’t because of the buzzer. And I want to be a pain, but I would really like for him to have that experience. Yeah. And she was like, I’m going to find out. know, so I had to be willing. I had to say something to not like you said, crusader way, but I had to share my heart and be vulnerable, which is not even.

Amy Julia (38:32)
Yep. Totally. Right. Right. And what I’ve also found is that when we are honest about vulnerabilities and needs in community, that often opens up other people feeling more able to take the risk of doing the same thing. Like there’s a real beautiful kind of flow that can happen there. And I guess the last thing on this topic, I wanted to ask you about how to do with the school system, because I do feel like there’s

Adrian (38:34)
People won’t know how to help us if we don’t tell them.

Amy Julia (39:00)
narrative among parents of kids with disabilities in terms of needing to kind of armor up when it comes to schools. And you and I have had really similar experiences. Penny also grew up in a very small town in Connecticut, but still 3000 people where we had to make it work. And there certainly were times where I thought she should have been getting something she wasn’t getting. But on the whole, it was like, I want to approach this as though we are a team caring together for this child.

So I just wanted to ask you about that. How have you have you done anything intentional to cultivate trust and kind of a sense of being on Amos’s team together within the school system? Because it sounds it seems to me like there might be a lot of parents who are in that position and who’ve been told actually something opposite of trust your school, be on a team with them, you know, be the PTA president, et cetera.

Adrian (39:56)
Right, yeah, I have tried to be intentional. I give cash for Christmas presents. don’t know if that’s, know, I’m like, nobody wants a mug, even if you give somebody $5, you know. But I mean, in all seriousness, I do, I try to be uplifting and helpful, and I recognize that I’m able to. if I, because of what I do naturally, if somebody says, hey, we wanna give you some Legos, I’m like, great, I’m gonna give them to school. You know, I’m always trying to,

Amy Julia (40:06)
Yes.

Mm-hmm.

Adrian (40:25)
or ask teachers like, appreciate you, what can I do for your classroom? And again, we all have different skill sets and abilities and maybe you’re not available in the daytime, but maybe at night you could staple papers, know? Saying, I value you and I appreciate you. Maybe you just send an email once a month and say thank you. I had an experience a few years ago and I don’t know the answers either, right?

And so I go into it like, I don’t know, when you have an IEP, this Individualized Education Plan for People with Disabilities, I think there’s this thought that the parent is the expert, but I’m not. I mean, if I knew the right thing to do, I would do it. But I don’t do either, right? Like, it’s so funny to me, like, well, what do you want? I’m like, what? How do I know? You know, so I think saying that, I don’t know, but we had,

I don’t know, maybe it was in the first grade and COVID had happened and there he was kind of assigned to a traditional classroom, but he was really spending most of the day in the EC classroom. And there was a field trip in the typical classroom and he didn’t go. And it was a few weeks later that I really like kind of made me sad. And I made a point and said, that was, made, that made me really sad. Like I really have realized

Amy Julia (41:40)
Hmm

Adrian (41:53)
that I do want him to be a part of things, you know, because we had this experience in pre-K. So I knew what it felt like and what it was like for him. And the principal at the time said to me, when we know better, we do better. And I really appreciated her being willing to be vulnerable with me. I had to model it, I think, first in some way. You know, and so then the next year came about and I said,

Amy Julia (42:17)
Yeah.

Adrian (42:22)
Here’s what I want for him. And I’m, can we just try it? You know, and if it doesn’t work, let’s go back to the drawing board. And I think they’ve always been willing to listen and hopefully, you know, there’s some things that maybe I hadn’t loved or, but I let some things go too. Like right now I really want, I want PE to be outside because the gym is too loud for Amos. Well, PE.

Amy Julia (42:44)
Hmm.

Adrian (42:49)
coaches in North Carolina do not want to be outside. I don’t know what in the world it is, but it’s like a real thing. But I’ve kind of let that go, right? Like I have to, I have to kind of pick and choose. And I could say, I said to the teacher the other day, well, do you think they could do one day a week? You know, just like, I just always being respectful and I don’t know if that’s the right thing, but I’m in this for the long haul.

Amy Julia (43:14)
Right now I had a similar approach where there were things that I would ask for and they wouldn’t really come through the way I expected or wanted them to be. I felt like it was really important to first of all, for me to name what was going well in terms of the relationships with Penny and her classmates and her teachers and et cetera. And to be very like if there were really important things like that’s all I’m going to focus on rather than.

Yeah, just kind of majoring in the majors, I guess. And I appreciate your attitude and example and all the different stories you were just able to share there. I have one final question for you. loved there was this one point in the book where you said, I’m quoting back you back to you, who have I become? I ask myself and find that I rather like this new person. And so I just wanted to end by asking you to talk about.

Yeah, who is the new person that you’ve become as Amos’s mom and how have you become that person and what do you like about her?

Adrian (44:13)
You I think I’m, you made me cry twice in a pie. I’m just so thankful for the perspective. You know, I feel like I’ve just gotten this behind the scenes tour of the real beauty of life. there’s a chapter in the book about success. And I don’t know if you were raised like this, but I tend to think so. I was raised,

with a very clear definition of what success was. And I was given these opportunities for an education and I really worked hard towards this goal and was pushed towards this is what success is. You’re gonna work hard, you’re gonna achieve it. And I did and suddenly we have this little person and success is gonna look very different, you know, and I had.

I didn’t know there was another definition for success. And one of the first things, and I write about it, is when Amos, he either ate with a spoon or drank from a cup. I think they both happened, he was maybe three or four. And my older son, who was about 10, started crying. Because he was so excited, and it was like, wow, like my children have been given this window that I didn’t get until I was,

in my forties, I’m so thankful because they’re gonna, their life is just so much richer and you don’t want to be like, well, I’m glad we have somebody with a disability because we’re all wonderful because of it. like, they are good humans. And I think my community, people at my church, Amos’ classmates, like they are going to go into the world and they’re going to be good humans, you know? And I think Amos, he was created to be on this planet.

You know, I’m so thankful to be an advocate. I’m thankful for, I don’t know what’s next. You know, I don’t, can’t tell you middle school sort of gives me some angst, but I’m not, I’m not going to sit around and worry about it. And I, as one of my co-authors loves to get, you know, she’ll be like, and I’m like, well, I cannot worry about things that I can’t do anything about. Like I have let that go, you know, like I just do the best I can. often say,

teasing, but seriously, if my children turn out terrible, you know, I follow all these news stories and it’s like somebody’s child was awful and the parents are like, they’re wonderful. That ain’t me. I’m going to be like, they’re terrible. And I just want you to know I did the best I could. I feel no guilt if someone is awful because I tried, you know, and I, in everything I do, I think to myself.

Did you do the best you can? Did you make a good decision? And it doesn’t mean I always do, but for the most part, I’m really doing the best I can. And I have to feel good about that, you know? So anyway, I don’t know who I am now. I’ll be 50 tomorrow, which is, thanks! I’m really excited about being 50. My husband and I were dating at my mother’s 50th birthday party.

Amy Julia (47:23)
Happy birthday.

Adrian (47:30)
So I’ve had to sort of say, Adrienne, you have an 11 year old and your mother had a 25 year old. So it’s a lot different. But you know, my life is always going to be filled with children. I don’t think there’ll ever be a time where I don’t have somebody living here or people coming back to visit. And you know, I’m just along for the ride.

Amy Julia (47:51)
Well, so are we. And thank you for taking us on that ride with you. And I do for anyone who’s loved getting a little glimpse into the way you think and approach things in your family life, I will point them to, again, Autism Out Loud, your book, but also to Tales of an Educated Debutante on social media and YouTube. So thank you so much for just sharing your story and your thoughts with us here today.

Adrian (48:18)
thank you for having me. Anytime.

Amy Julia (48:26)
Thanks as always for listening to this episode of Reimagining the Good Life. And we have got more good things ahead. Again, I’ll be speaking in Bethel, Connecticut for Reimagining Family Life with Disability. That’s on May 3rd. I would love to see you there in person. I’m also excited for what’s ahead on this podcast. We have a conversation with Kara Meredith about her new book, Church Camp, and also an upcoming conversation with Mircea Wolff about his book, The Cost of Ambition.

I am really excited to talk with both of them and share their ideas with you. I always love hearing from you, so please send questions, suggestions, share this conversation, rate, review it, and be in touch. It’s amyjuliabeckerwriter at gmail.com. And finally, I want to thank Jake Hansen for editing this podcast. I always want to say thank you to Amber Beery, my social media coordinator. She does

everything behind the scenes to get this out in so many different formats. And finally, I’m thankful that you are here, that you’re paying attention to these important stories and ideas that I do believe make our world a better place. I hope that this conversation has helped you to challenge assumptions, proclaim belovedness, and envision a world of belonging where everyone matters. Let’s reimagine the good life together.