Episode 104: Jeniece Dortch, Founder of Special Needs Siblings

Episode 104: Jeniece Dortch, Founder of Special Needs Siblings

Overview

Jeniece Dortch is a mom of six, her children ranging in age from 4-16 years. She has a passion for the special needs community that was born when her second-eldest son, Christian Garcia, was diagnosed with autism and epilepsy. She not only saw the need to advocate for these communities, but for the entire family unit (even those who are able-bodied) as inclusive members of the special needs community. With this idea in mind, she formed Special Needs Siblings, Inc. — a nonprofit committed to raising awareness, support and resources for the siblings of disabled individuals. Now a public speaker, writer, and blogger who fights for both the special needs and minority communities, Jeniece has also founded JLQ Marketing, an organization that focuses on helping non-profits grow. She created this company along with her loving husband, Thomas Dortch III (and they were recently married, so send them some extra celebratory love!). Jeniece and Thomas continue this mission to give underserved communities and organizations a voice.

Takeaway

Sponsors

Gena Chieco Coaching Uninvisible Pod

This episode is sponsored by Gena Chieco Coaching. Get 10% off Executive & Life Coaching using code INVISIBLE!
With a background in psychology and law, Gena inspires clients to step into their best lives by helping them access their inner strengths, clear the cobwebs holding them back, and cultivate a dream-big, growth mindset.

Transcript

Jeniece Stewart Jeniece Dortch Special Needs Siblings Autism Epilepsy Disability Uninvisible Pod

Lauren: Okay, guys, thank you so much for joining us. I am here today with a woman who you may know by a different name, Jeniece Stewart, now Jeniece Dortch… she’s a newlywed, and she's the founder of Special Needs Siblings and has a son who lives with epilepsy and autism. She's an advocate for both conditions and for siblings and caregivers. So Jeniece, thank you so much for being on the show today.

Jeniece: Thank you so much for having me. I'm really excited. And I'm really grateful to be here, Lauren.

Lauren: The feeling's mutual. So I think most people know, at this point we like to dig straight into the story. I'm not going to pull any punches with you. And I was wondering if you could tell us when and how you first realized that Christian, who's now your second eldest son, needed medical attention, and what steps you've taken to keep him in better health since then?

Jeniece: Well, this is taking us back. Christian is 15 years old. So this is 13 years ago, when he turned two, so about the age of two. It really started with the seizures that he was having.

He started to make these weird gestures with his arms.

We saw the Hulk actually, the movie, and we thought he was mimicking The Hulk moves, where he kind of moves his arms up and does this weird … just like … errr! He had been learning his alphabet and pointing to his nose, ears, eyes, stuff like that. These weird gestures were actually seizures that he was having. It wasn't until we were at my family member's house, and he had a convulsive seizure at the age of 2.

Lauren: He had a grand mal?

Jeniece: Oh, my goodness. And I didn't know what that was. We took him to the hospital and they were like, “This is a seizure, he's having a seizure. You need to go see a neurologist.” That's when it really started turning. But that first neurologist told us that these were all muscle spasms, and that he was not having a seizure. And so we had to go and try and find some more — second opinion, third opinion. 

Lauren: So you knew to do that. You knew to push for second and third opinions.

Jeniece: My mother's in the medical field. So I'm so grateful for her. She's an anesthetist. So she’s very much into … get a second opinion, get a third opinion, just to be sure. And if he has one seizure, that does not necessarily mean you have epilepsy. Those are two different things. That's kind of where it started with him. And then, between 2 and 3, he started to digress. We were trying to put him on medication. But also he stopped talking to us. We thought at first that it had to do with my father passing away. He was very close. We were living with my parents at the time. I was young, I was like 20 years old. My father died suddenly. And we thought that Christian kind of went silent because of the death and the passing, and he wasn't talking to us. As a new mother, you don't automatically think there's something wrong with your child. You’re told, he’s gonna grow on his own, he's gonna speak when he's ready to speak, be patient with him. You don't want to get anything put on paper that says he has anything — because we don't want him to be labeled as different.

Lauren: I'm really glad that you bring that up, because I think there are some people who might be of the camp of … let’s get it labeled so we can get it treated. And there is the more cautious camp of … let’s not get it labeled, because it might be considered a pre-existing condition; he gets labeled and then we have more money that we have to spend on this in the long-term.

Jeniece: And even just in a family perspective.

I come from a very religious background, from an African-American family, and having disabilities is not something you really discuss.

It's not a conversation that we like to have, or like to say he needs medication for something. We're not trying to medicate our children; we're not trying to do things like that if we can avoid it at all costs. And so I really thought that there was nothing wrong with him. And I still don't think there's anything per se “wrong” with him. He's just different. And I didn't understand that. And it wasn't until the doctors … when he started that third year … he's still not talking. He's still not saying anything. He was doing this at one point, he regressed. And all these terms that are popping up, and he's lining items up in the room, and he's not playing with his toys, no imaginative play. Just little things that I wasn't paying attention to. Because he's just my baby, and he's fine and there's nothing wrong with him. He's just doing what he likes to do. And eventually, we got that diagnosis at three years old that he was actually on the autism spectrum. It wasn't Asperger's or anything like that. It was like a spectrum. I think I was 21 at the time; I’d just had another child, his brother Caleb, and that was a lot at that moment. 

Lauren: Absolutely. To be a young mom, have this be your first child, the stress of having a second child — that's a lot anyway. But as you say, also culturally with your family, maybe not being as accepting of neuro-diversity perhaps. It's really interesting, the journey that you've been on, which has been so specific to your experiences, but I think is so universally understood by so many parents who are in this position. So, what has happened since then? What was that like for you, too? Did it feel like the diagnosis was something that made you turn your life upside down? Or was it something that you sort of took in your stride, and worked around? Because it sounds like you had that sort of millennial approach to parenting that is, let's let them be and see what happens.

Jeniece: Yes, I was trying to do that as much as possible, letting him be. But also trying to realize that there are a lot of resources out here. And even in my community; I lived in Gwinnett County, Georgia. And that's one of the more diverse communities. I've always taken the approach of Google everything. Google, Google, Google. So I think I was really into trying to figure out what I could do as a parent. But also, there was a lot of blowback when it came to the religious upbringing that I have experienced. I'm a pastor's child, and I've been in church my entire life. Now not so much! But growing up, it was … pray it away, or pray for it.

Lauren: But that’s interesting, because your mom’s an anesthetist and your dad’s a pastor, So it’s like science and faith!

Jeniece: Yes! She's into her faith. And she somehow is able to balance the both worlds. She also feels like God gives you doctors, she gives you access to information to be able to do things that they weren't able to do before. 

Lauren: Thank you for saying that God is female, as well! God is a woman, I think that one's pretty clear! (laughs)

Jeniece: (laughs) I think for me and Christian, I just kind of realized that I needed help. But I didn't know for myself. I think for him; I was more focused on him and trying to stop seizures. And even with his autism … there wasn't a lot of focus placed on autism because the seizures were happening so frequently. 

Lauren: That was more severe.

Jeniece: Yeah.

It was hard for him to remember things and what you are doing when you have seizures 30 times a day.

How did you sit in therapy, and go to school, and do these things? 

Lauren: Was there ever a correlation made as well, medically, between the seizures and the autism?

Jeniece: Yeah. We’ve been tested so many times; there are different things we tried, like the gene testing and all this stuff. Nothing. There's nothing that they've been able to link together. 

Lauren: I’m glad. It's interesting, because these two conditions exist separately with so many different patients. And to think that in a sense, autism being caused by epilepsy … that idea makes autism seem more of a negative diagnosis, when actually it can be such a gift as well.

Jeniece: Yeah. And I look at my son like a gift. I want his seizures to stop. That’s my main focus. It's never been … how can I make him become more like me, or process things like me. I think for a while I felt that pressure that he needed to be more like his brother or his sister, as he was getting older. And then realizing that he was doing things his way in his own time. And he may never do what they do. And that's okay. There's nothing wrong with that. My biggest issue is the fact that I can't get seizures under control so he's not tired all the time, or he's not dropping in the middle of the grocery store. Or he can just communicate however he feels. I don't know how he's feeling half the time. So guessing that for the last 13 years has been probably the biggest challenge that I've been having, trying to just feel him out and to understand where he's at.

Lauren: So is he largely nonverbal now still? 

Jeniece: Yeah, he’s pretty much nonverbal. There are points when maybe for a few months, he'll say words and a phrases. He has echolalia [the unsolicited repetition of vocalizations made by another person]. So he'll repeat certain things, even music. But I feel like he knows a lot. But sometimes it's stuck. And he's trying to figure out how you can get it out to us. And it's funny, earlier today, he walked up and asked me … he was walking with animal crackers … and he walked up and pointed one in my face and said, “Mommy, you want one?” And I was, like, “What?! Yes!” Oh, my gosh. My husband was, like, “I've never heard him say that before.” I was, like, “I know, it's been so long for me.” I just took it and tried not to overwhelm him with my gushing about his talking to me!

I just take every moment as a gift. There’s a lot when you do the comparison thing. And so I try not to do that.

Lauren: I think that's such a common thing, with autism, especially. With families where there's maybe a neurotypical child and a neurodiverse child, much like in your case, there is that comparison game that can be played. And it seems to me that a lot of families where there's a sibling who is on the spectrum, there's always that adjustment period, when the diagnosis happens, of going from ‘this is a disability’ to ‘this is just the way that the child is.’ It has no bearing on their value and their worth in the world.

Jeniece: Exactly. Really, it's interesting, because society makes it that way as well. It's like this pressure to conform, and I hate that. I hate that it's even there. And even to get comments about Christian… “Well, he doesn't seem autistic.” Or, “He doesn’t look like he has autism.” Or, “I know somebody with autism. He doesn't do this. What's his gift?” And I’m, like, “He's him.”

Lauren: His gift is that he's an individual, thank you.

Jeniece: He’s a human. What do you mean? “Well, all autistic people have something they're really good at. You just have to find that out.” And I just want to punch somebody in their face. Just don't talk to me right now. This is not what we're doing. But yeah, there is this underlying acceptance that we have, even as parents, realizing that he won't do the things that I did growing up, or his siblings are probably going to be able to do. During this whole COVID experience … now things are never going back to a normal. But for Christian he's never been a part of a normal demographic anyway, so we're all kind of like getting into his little world because I'm thinking he would say nothing I've ever done is anything like y’all. I'm always used to changing and having to adapt who he is to fit everybody else.

Lauren: But also having that more concentrated time when we're stuck indoors and in lockdown and stuff like that … it's probably got to be positive. It's probably reinforcing all your bonds.

Jeniece: I think so. It definitely has its moments when we're all in here and we're all tired of each other.

Lauren: I mean, six kids. And a new husband. That’s a lot!

Jeniece: We’re all here. But I think you're right, it makes us stronger. And it definitely has been working on our communication, because you can't avoid anything when you're all staring at each other. Late in the day, we're all looking at each other, and you got to get it out; it's going to rise to the surface, and you're going to deal with it.

Because at the end of the day, we’re all family. We're all here. We all love each other.

So what are you going to do?

Lauren: I’m wondering as well, when Christian was getting these diagnoses … when you were younger, as well … was there an awareness of mortality, or the finality of these definitive diagnoses in terms of your lifespan … and going, all right, so he's a child who's going to grow into an adult who's probably going to need care. And this is a child who won't grow up and leave home. What is that awareness, like, as a parent?

Jeniece: I think as he gets older, I’m becoming more aware of that. I think I've tried to avoid it for a long time. Because I've always had this hope that maybe the seizures will stop, and he will finally get it together. And then he'll be able to tell us exactly what he wants to do. And then he will have options, and he can do whatever he likes. And now he's 15, and he's still having seizures every day. And I’m, like, oh, wow, 18 is three years away. We’ve had these conversations for the last 13 or so years. I was a single parent for a lot of the time after my divorce, and then having relationships and trying to find work and making sure that things are balanced, because people don't like to hire people who are not reliable. And unfortunately, that required me to go to doctors’ appointments, or go to speech therapy, or go to an OT, or PT, or he had a seizure and now we’re in the ER. They don't understand that, and the work/life balance is difficult. And now, I think I'm accepting that he may stay with me forever. And that's fine. Even though I always kind of knew it might happen, I never felt prepared for that. Until most recently. And being able to monetize my gifts and learning how I can do things successfully from home, helping other people with their stuff, and realizing that, oh, I can do this. I can help people, I can get paid so I can support my family so I can be able to afford Christian and all the things that he needs — and his siblings, all the things that they need. It's been an adjustment, and it's definitely been a rollercoaster of emotions. It's not like one thing. I think I have moments where it's like, oh, wow, this is something that's going to happen. And the kids will ask, well, is Christian gonna be able to go live somewhere else? Does he even want to live with you? And he probably doesn't. And I think that's something that I have to accept, too.

Lauren: He’s at that age where mom and dad are not cool anymore. 

Jeniece: No! He gets tired of me, too! And I think that, as parents, opening up, I’m realizing I have to listen to his brothers and sisters sometimes, because there are some times they'll say, “Mom, he doesn't want to do that.” Or, “He likes this.”

Lauren: Also, you're managing a lot of people's opinions and feelings … this is the gift and curse of being a mother, right … especially with many children, you're constantly working around what everyone else needs. Especially with COVID going on, where you're also doing homeschooling and everything that is happening right now, that's forcing you to look inward even more. As you're also looking inward with yourself. Even publicly, you've been really open about getting to a place of body acceptance with yourself, and mental health acceptance with yourself. So finding your own center, let alone your own center in the midst of the needs and feelings of all these other things.

Jeniece: Yes, I think that's so true. Because that's all part of self-care.

And for a long time, I avoided taking care of myself, not realizing the children are all watching how I'm taking care of myself.

And that's a reflection of themselves. So if I'm not taking care of me, then they're not feeling like they're worthy of taking care of themselves. And so I'm pouring all this stuff into them, and they're looking like, Mom, you're drained. So you're not even giving us your full self because you don't have your full self to give. That makes sense. This has been totally a wake-up, this COVID stuff. And it's really put us to a place where I’ve had to stop from moving so much, because I've always been, like, move, move, move. And then the kids will say, “Mom's favorite thing is to work.” And I’m, like, “No, it’s not!”

Lauren: Because I have to!

Jeniece: I have to! I‘m, like, "Don't you want things?” But realizing, okay, that's all they see; they see mommy working or mommy doing something. And I’m, like, oh, I hate that. I don't like that. 

Lauren: I mean, that's partially our culture here, isn't it. That's life in the US, especially if you have a child who's living with disabilities, because, as you said, there are jobs that you haven't been able to take because they were discriminating against you as a special needs mom.

Jeniece: Yep. And once they find out … I would avoid even mentioning any home life in an interview or anything. I’m not about to answer any of these personal questions, and I'm not going to give them anything extra. I'll get the job, and then maybe I'll keep it for six months, maybe a year until they figure out … okay, she's not as reliable … I do good work when I'm there! 

Lauren: But your priority’s your family. Fair enough. 

Jeniece: Yeah. So it has definitely been a struggle.

Lauren: So in the midst of all this, you founded Special Needs Siblings, and there's no one who knows better, right, what it's like to have one child who is living with disabilities and other children who are, at some point, probably going to … and you say this on the website for Special Needs Siblings, too… at some point, these kids are going to probably take over Christian’s care, right? So how does that look for you in terms of an advocacy journey, where you've been an advocate for Christian; you're aware of your kids stepping into that role as well, and you're wanting to support other families who are going through the same.

Jeniece: I didn't even see it at first.

I didn't see them; I didn't see that they had a struggle, or they had a need.

And that's what's so funny about even your podcast, you know, Uninvisible … it's like, I see them now. I see them trying. For a long time, Caleb would ask to take medicine when I would give Christian his nightly meds. And I would be, like, “Stop pretending you want to have medicine.” Or, “Why do you want to sit in his wheelchair?” I would get so defensive, like, “You're well. You’re good. You don't have to worry about any of this stuff your brother is struggling with.” 

Lauren: But that’s his role model.

Jeniece: Yes! He’s looking at him, like, ‘Well, that's still my brother. And Mom, you spend so much time with him. If I have something going on, maybe I'll get some of that attention, too; maybe I'll get some that time.’ He had to be 6 or 7. I didn't even realize it till a few years ago. And so I started reaching out online, on Instagram, thank God for Facebook communities, and realizing, wow, there are a lot of other parents just like myself that are trying to figure it out. And there are adult siblings that wish somebody would have asked them questions sooner, or included them in the conversation. So I think that, with Special Needs Siblings, when that started, and we became an official nonprofit … realizing that we can help or we can at least connect communities together, and be able to share resources with each other … because our siblings do oftentimes become caregivers, especially the females in the family. That is fact, this is how it happens. But there's not a lot of support for the siblings, and siblings will become caregivers for themselves, their parents. And if they have a family, their own children, and if they have a spouse. It’s just so much pressure, it’s so much work, and it's so challenging. But it's something that they don't usually feel forced into doing. They want to be a part of this conversation, they want to be included. And so, making sure that they feel like they're prepared, number one; and making sure they have support, and they're able to find that. And so Special Needs Siblings is all about raising awareness to the siblings in our families, raising support, raising resources and figuring out ways that we can work together and better support the siblings. Because I know my children are young now, but eventually they will be older. And they love to meet older siblings and they love to meet siblings like themselves, and to just know that I'm not the only one that stays up all night because my brother was screaming yesterday. Or, my brother hit me and I feel bad for hating him right now — because I know he's gonna have a seizure in an hour and I'm gonna feel bad. I want to help him, but he really pisses me off sometimes and I don't know how to say this.

Lauren: But that's okay.

Jeniece: And it's okay. And there's a freedom about being able to say, “Mom, I don't want to be around Christian. He’s getting on my nerves and he's making me really upset.” And for a long time, they wouldn't even say anything negative about him because they felt guilty.

And that is so heavy and it's such a weight to carry as a child — to never express it.

And then to become an adult and to never have dealt with any of those issues. So that's where we're at with that.

Lauren: It’s so amazing because I think in this disability community, there's a lot of support for patients, a lot of foundations that are designed to support patients. But it's a rarer conversation that we have about supporting caregivers. And it's such an important one, right. This idea that you brought up — that sometimes we're so stuck in our own experiences that we forget to look outside ourselves, and suddenly realize that we're actually not alone. Because I think it's very easy to feel alone in these circumstances, too, and to feel like your situation is unique, especially if you don't have anyone in your immediate circle who's going through similar experiences. But this concept of longer-term support for children who are currently in a caregiving role, and will be taking on more responsibility in the future, and being able to foster that advocacy and that love, continuing that conversation in an open way … to me, it's so radically accepting and radically beautiful. And it says a lot about who you are as a mom, that you were thinking about … okay, so my kids and my kids’ connections. I just think it's so wonderful. And I said to you, before we started the interview, I wish I had a sibling to go through what I went through. Because sometimes we want that person who's close like that. And of course, not all sibling relationships are going to be that close. But the fact that your kids seem to all be really close and are going to grow up with support. It's heavy for them to carry around some of the guilt that they carry around. But it's also got to be, in some ways, a relief for you that you've been able to create some structure for them.

Jeniece: I feel very blessed that they have each other. Because at the end of the day, I feel like Christian won't be alone. And I think that gives me a lot of peace in letting me know that, prayerfully, I'm in a position and everyone's taken care of, and so he's not a burden to them.

Lauren: Well, he’s not a burden, period.

Jeniece: No, No, he’s not! But that weight that sometimes siblings will feel that their brother or their sister is a burden. And if you as a parent haven't prepared things, if you haven't answered those questions, if you haven't put things in an order. It's like you're stepping into a role that you have no idea about. It's not that you're a burden as a person, or as a human or as an individual. But sometimes there are things that you don't know about. And so there's this underlying … how do I catch up? How do I get up to speed on something where I've never been included in a conversation? And that's what siblings that are adults sometimes feel like if something happens. It’s the truth. And I think that the more we talk about it and say, as a parent, how do I prepare for the unexpected … you want to be prepared for whatever may come. And should anything happen to any of the children, I want to make sure that we're as prepared as possible for every possibility. So that's what I mean when I say, okay, I want to make sure that my kids are good. And I want to make sure that they're aware. And I'm happy that they have each other, because from Rose who is 5, to Raymond who is 5, to Jada and Caleb, and Tiana … I’ve got a 16-year-old, I’ve got a 13-year-old, an 11-year-old … if Christian has a seizure, they will come and find me. They will lay him on his side; Rose will come and bring her sticker book of Band-aids. They’ll grab a blanket and they'll let people know in the store if he needs space right there. If he needs something, they'll definitely say it. Like, “No, he's fine. Just can you stand over here?” And I'm just hoping that I'm preparing them for anything. They’re not without knowledge. And I think that's where they used to feel powerless around their friends if he would have a seizure, because they couldn't even speak about it. They didn't know, and so their friends would ask them, “Why is he flapping his arms?”, or “Why did he fall out of the swing?” “Why did he fall, what's happening?” And they couldn't articulate it, Jada and Caleb; they’d be upset or embarrassed, instead of feeling pride or protection or just anything of a positive emotion — because they had no knowledge.

I was trying to protect them from their brother and all the things that were going on, and me protecting them was leaving them powerless to communicate how they were feeling.

Lauren: And probably wearing you thin, too.

Jeniece: I think that it's all about educating. There's a lot of power in education, and just asking those questions that people just don't think about often.

Lauren: Yeah, I just think it's so beautiful. So what is a typical day looking like for the family? I know it's unprecedented times right now, because of COVID. You're balancing — and you touched on this earlier — the demands of work and life, working around Christian's potential symptoms, potential seizures, and working with the kids. How does that all work out with you guys? Do you have to have a really organized system? Or do you sort of work as a unit?

Jeniece: We work as a unit, but I've been getting on more of a system. Now that they don't go to school, we do home schooling. So that has been an adjustment, being home, because I just couldn't risk taking them back to school and then something happening or they bring something back home. I don't want anything to happen. So we've been at home doing the homeschooling thing, and 9 to 1 o'clock it is school time at the house.

Lauren:  I wish my school day had been 9 to 1!

Jeniece: I’m telling you! I try and tell them, this is a good thing!

Lauren:  Enjoy this! 

Jeniece: They’re, like, “We don't like homeschooling.” And I’m, like, oh, gosh.

Lauren: I feel like those are much better hours to learn, though. We have so many studies that show that when kids are going to school at 7 and 8 in the morning, their brains aren't working yet.

Jeniece: No, I don't even want to get up that early! I asked them, “So do you want to do early afternoon learning, or earlier?” And they were, like, “Let’s get it over with.” So we do 9 to 1, and we do a Monday through Thursday. We don't even have school Friday, and all learning. And it's interesting, because Christian is … I don't like to say that he's at Rose and Raymond's level, because I don't like to put him in a category of simply his age or what they think he’s supposed to know. But he's doing his alphabet. We were doing As, and this week, we're doing Bs. The twins are learning their Bs, Christian’s doing his writing. Some days, he'll be up and he'll want to participate. Other days, he may have had a seizure, and he just wants to lay in bed. That's okay. I don't try and put a lot of pressure on him to come and do more than his body allows him to do. And I think that that's where the school was rough for him, because he would sleep half the day when he would go to school. And so just being mindful, and his being home … I can see exactly how his day probably used to go when he was at school. And when the teacher would write and say, ‘He fell asleep, he had a seizure.’ Now I see. ‘We tried to get him up to do some work.’ But now he's able to rest it off. And then, if he wants to do his worksheet or something later, I'll sit down with him. He loves reading. So we'll do reading books. Jada and Caleb have assignments that they do. We'll take trips. Last week, we went camping. This week, we're going to Alabama to visit The Legacy Museum. And we're learning all of our African-American history. They are half-Hispanic so they're learning Mexican American history, asking a lot of questions. And I'm welcoming questions, because I think that's something that I'm hoping we can do more of because of our unschool homeschool approaches.

I want them to kind of lead the way when it comes to their learning. I want them to tell me what interests they have.

We just follow their lead a little bit. And then give them access, make sure that they're around people that look like them in fields that they're interested in. And see if this is something they’re really interested in. Because I think people do that in college. I didn't go to college, but my husband did. And I know a lot of people who will go, and then they’re, like, “I don't even do anything that I majored in.” And it's interesting to hear stuff like that, to know that this is the age that they could be learning and dabbling in different things. And different things … checking accounts, savings accounts, finance.

Lauren: Oh, I wish I'd learned that stuff in school! 

Jeniece: I was, like, “These are the kinds of things I would love you guys to learn.” There’s a million things they can teach you in school, but nothing's going back to normal right now. So why stress myself out, why stress the kids out. Let's do our 9 to 1 Monday through Thursday. It doesn't look the same almost every day. But I've heard from a lot of homeschooling moms that schedule is the hardest part to get. So if we can get the schedule right. I'm Mrs. D during 9 to 1. Do not call me Mom!

Lauren:  I love that. What about you? What about work for you? I love this education model that you're bringing to the kids, because you're offering them something and saying, “What do you want to do?” rather than dictating what they have to do. So how does it look for you to be also finding work that works around your schedule and the family's needs? 

Jeniece: It feels really good. I actually work on websites and helping people with their marketing, social media and small businesses or nonprofits in our area. So we started a company, me and my husband. We do that marketing, and I can do that usually after they go to sleep. Or I can get on a schedule; on the weekend, I'm working on it.

Lauren: So you’ve had to create work for yourself, it sounds like.

Jeniece: You got to make it; you’ve got to make it work. And there’s so much opportunity out here right now, especially in light of COVID. People are a lot more understanding, everyone's so flexible. People all need help and they need assistance and realizing that the Internet is not the enemy. Being online is not the enemy; connecting with people online, it's not the enemy. We don't have to be in-person to be successful or be productive. And being busy is not being productive either. So I like to remind people that at my busiest I wasn't producing much.

But now that I'm more at peace with the family, we're on a schedule, I feel like I'm way more productive than I've ever been.

And I'm making sure that things are getting done. And I'm hopefully showing the kids that, rather than telling them that. They can see it happening.

Lauren: There’s no doubt you're an excellent role model to them. Christian’s 15 now, right, so in a few years, he's going to age out of pediatric care. And I know that support services, particularly for children who are on the autism spectrum … there's a big disconnect between the pediatric and adult support services. Have you been looking into the future and considering what that's going to look like for you guys as well? And what's available, and not available to you? 

Jeniece: Actually, yes, we have. We’re in Georgia right now. In the next two months, I'll be making a trip to Colorado, a trip to Chicago, a trip to California.

Lauren: I was gonna say, come here, we've got great disability.

Jeniece: That’s exactly what I said; we’re gonna have to go where there's care. Now that we have employment, and we are self-employed, and we can be a little bit more flexible, we are going to have to move.

Lauren: But this is uprooting the whole family. Eight of you are going to have to move somewhere else in the country, so that you can get adequate support services for Christian. 

Jeniece: This is so scary.

Lauren: But also that's a huge expense. And it's a huge expense, not only financially but also emotionally, to have to move away from family. And you're not the only family that's in a position, that has to do that. So, it’s interesting to me that this is such a common narrative in families where there is a disability present. That we're gonna have to uproot ourselves, that's just the reality of it.

Jeniece: There’s not another option. I have not met an adult here, or someone that's caregiving for an adult, that's had a very positive adult experience in Georgia, especially not African-Americans. I have not been able to find a family. A lot of the families I know … as our kids are getting older, they're moving different places. And so that's why I say these areas, because I've known people personally that have moved to different areas, and have experienced better care. It's unfortunate, but it's just the truth. I'm even looking at different countries at this point. Maybe there are other countries that are even better for us. And what does that even look like? What should I be expecting for Christian as he gets older? And then making sure that I take into account they’re brothers and sisters, because moving is not easy for anybody. And I definitely don't want to hurt them more than I'm helping them. 

Lauren: I think they know, though. It sounds like you guys are informing each other, and they're enough aware of what's going on with his needs. Yeah. So, we're talking about invisible diagnoses here. And I wonder whether you've ever been in a position where you've been confronted? I know you've had people say, “Well, he doesn't look autistic,” that kind of ignorant stuff. But where you've been forced to justify the existence of Christian’s diagnoses or validate his existence to people who just didn't understand it, because they couldn't see it? What have those situations looked like for you guys?

Jeniece: Well, it's different, depending on where I'm at and the people that I'm around. I know that there are some things Christian does, and because he doesn't look like he has a disability and he's older now, people are less forgiving of him. Some of his actions.

Even kicking rocks while he's walking down the street; people will say things like, “Get your child to stop.”

He's not necessarily bothering anybody, but he's doing something that no one else would probably do, like kick the same rock all the way down the street. Or picking things up and putting them in his pocket, and not speaking to somebody when they speak to him first. Things like that. I think that when he was younger he was a lot cuter, and people would laugh it off. Now he has a mustache coming, and his voice is a little deeper. And people are just waiting for something, or waiting for him to do something.

Lauren: That sounds like inherent bias to me, too.

Jeniece: Oh, very much so.

Lauren: A very healthy dose of racism right there.

Jeniece: Very, very much so. But as a mother, I'm more aware than he is, clearly. And we're always trying to protect him. Even going to the hospital — he’s broken bones — and he has a high pain tolerance. So he won't say something's hurting him. I've been to the ER and he’s broken his toes. And they told me, there's nothing wrong, or it's just a small fracture. He doesn't need any pain medicine, because he's not crying. And it’s, like, “He in a lot of pain. You may not be able to see he's in pain, but I know he's in pain. Don't tell me he's not in pain.” I'm pressing on it, “You just show me. You show me a screen with his broken feet. You don't think he's in pain at all? Because he’s not crying? He doesn’t really cry. That doesn't mean he should sit here hurting because he's not saying anything to you.” 

Lauren: That kind of advocacy … is that something you learned from your mom? Like, not taking the first answer.

Jeniece: Oh, yeah. And sometimes I'll even call her and she's like, “No, just say it like this. Or put me on the phone. Put me on speakerphone. Let me hear what they have to say.” Because they don't always respect me as the mother, that I know what's best for him. Or, I can feel, I can sense that he's in pain, even if he's not expressing it or sharing it with them. I have to fight for stuff like that with him, fight for him to stay in the hospital for an extra day, because the seizures are not under control. Even though I'll say he has seizures every day. I’m, like, “I still want him to stay here overnight. Because these are not the same type of seizures he has every day. These are different, it's a little different.” And they will push back. “I'm not signing any papers to leave here until he's been tested. And you guys have tested this blood or this one or adjusted this type of medicine.” "But you said already he he has seizures all the time. So you know, I think he can just go home now.”

The fact that we can like sit here and be okay with the fact that he had 10 seizures today, and that's fine, because his baseline is 10 … it just makes me cringe.

And it makes me want to up and leave the state of Georgia. But I've never had the opportunity to be able to do that. And so I'm definitely grateful for all the advocates and everybody talking about all these things that are going on, and this unspoken word in our communities. People don't like to listen; they don't like to listen, they like to tell you how you should be doing things, even as a mother, as a minority. Your opinions are not considered valid unless you come with a book. Or like my mother, who already knows the ins and outs of the medical system, to be able to say certain things to get you to think a little bit. So I think that's all self-advocacy and knowing our rights and educating ourselves.

Lauren: Yeah, it sounds like you guys have definitely done that. And I'm sure that's part of the ongoing work of Special Needs Siblings. I'm also wondering … because this sounds like it's both social and in health care … but these experiences of prejudice that you've had not only as a woman, but as a woman of color. And that Christian’s experiencing as a young Black man. Can you see your experiences, some of those circumstances, being different if you guys presented differently — if he were a young white boy, if you were a man advocating for him or a white person advocating for him? How do you think things might be a little different, particularly in healthcare?

Jeniece: I think that I wouldn't receive as much pushback. There's a lot of white mothers that have said certain things … “Well, my experience wasn't like that,” or, “I really liked that doctor.” And I've read comments, and I’m, like, that doctor did not do that for me, that was not me. The more I realize the importance of finding health care providers that look like you sometimes, and will take you at your word, and you don't have to prove yourself. I feel like that extra mile where I have to be better, or I have to do more; I have to come with a little bit more knowledge than my counterparts. It’s, like, okay, I've been doing this my entire life; I know how this works. I know I have certain things that I could probably get away with if I were a white man. I know I probably wouldn't have pushback with some of the white male doctors. They would give me that benefit of the doubt. And even being a white woman coming in with one child or two children. Even coming in with five children, people can be really dismissive of you and be, like, oh, well, you know, you did that to yourself. And it's like, “You know, I didn't do anything to myself. And they're not a burden to me; they’re not a problem. I need your help. This is why I'm here. I'm not here for you to judge me and tell me, don't do this, or, this is how you should be doing this. Do you know how these children were here?” You have to say certain things and realize that you just have to leave that healthcare provider — even if you hear the nurses, or the medical assistants. This all trickles down from the leadership, this all is a part of it. From the receptionist taking you in, making comments … that all goes back to that atmosphere of the care that you've been given and the care that they give you. I worked at Emory, in patient health, for a little while. And I was around doctors and nurses, and you see how people treat you. And you see the ones that they'll let slide; they’ll let them be late to the appointment sometimes, and they'll give them the extra benefit. And you see the one that they will hold to that ’10 minutes and you're late and we’re not accepting you. We don't want to hear from you. We don't have any time for you’ excuses. Or what kind of health insurance you have. I mean, that right here. If you're just straight disability Medicaid, you're not going to get this.

Lauren: You’re second class.

Jeniece: It's just really unfortunate, but it's the truth. And you notice that, you notice the type of care you receive.

Lauren: Yeah, absolutely. Would you say that these racial and gender inequities in the health care system are a public health crisis of their own? 

Jeniece: Yes, definitely.

Lauren: No one has said no to that question yet. I’m hammering the point over here! I'm like, Hello! (laughs)

Jeniece: Please, let me meet someone who doesn’t!

Lauren: Does that also become a conversation as part of Special Needs Siblings, too? Do you guys talk about the role of race and gender in these situations? Because I know with autism, especially, that's considered a white boy’s illness or disability, right. It's fascinating to me, these pre-conceived notions that people have about these diagnoses. But then also, the racism and the prejudice that is constantly … I mean, you're having to work around that all the time.

Jeniece: All the time. And for a long time, honestly, on my account on Instagram, and on Facebook, I didn't even put a face to Special Needs Siblings because I had a fear that if they knew that it was a Black woman running this account, they would not accept the things that I was saying. So I didn't even talk about my family and bring our story into it until almost two years of being in.

I would just share other people's stories I would hear, and I'd never put a face to it. And then when I finally did, people were so accepting.

I had a few people that were like, ohh … you know, a little pushback. But for the most part, the fear that I had, over all the years of experience that I had … traumas and things in my own personal life … when it came to pushing back against things, I thought it was safer for me to be silent and to leave my race card off the table. Because it's not about me, this is about the siblings. But then realizing that there are a lot of siblings of color out here that need assistance; they need help. And they won't be able to get it if we don't talk about it. We're not talking about race, but it's happening. People see it.

Lauren: We’re talking about race!

Jeniece: We are. And it's just funny that you would say that because for a long time, I wouldn't even discuss it. And now we're literally trying to partner with some other sibling organizations. We’re trying to connect with some sibling organizations to put on panels for siblings of color to be able to share their experiences. I know, as a mother, I've had pushback trying to join support groups for siblings in our community — and not feeling very welcomed at all.

Lauren: As a woman of color? 

Jeniece: Yes, because it's like this unspoken … oh, why is she here? 

Lauren: Well what that is, is racism. It's unspoken by the racist, but that's what that is.

Jeniece: It’s definitely out there. And it's something that I've experienced since I grew up in a predominantly white neighborhood school. There was a time that I was one of the only Black girls in my class. And realizing  … okay, this stuff is still so heavy, it's so everywhere. And it's so exhausting to have to continue this conversation. But you can't stop talking about it. Because then they win. You can't just go silent on this issue, even if we're still talking about it. Because this is something we live with every day. So, making sure that I do show my face, making sure I do show my children's face, making sure I do share all siblings and letting them know that there are siblings out here that look like you. Parents, there are other people out here and this is an issue that we all have.

Lauren: And that it’s a valid narrative.

Jeniece: Yes. So I definitely have been trying to do more of that and sharing all of that information.

Lauren: There's no better time as we're confronting systemic racism, once again. Because it never went away — for those who are wondering. 

Jeniece: No, it’s here.

Lauren: Yeah, it’s here. And it sounds like you are doing everything that's within your power to confront it. But it's also about recognizing that that's not just your work alone; that it requires the support of people who are maybe outside that experience as well, to move these conversations along, in every group, right? We're all responsible for continuing that conversation.

Jeniece: Yes, we all need to help. This is not going to be done by itself.

And it's not going to be done in one day. It’s an ongoing effort.

Lauren: Yeah. But it's interesting, too, because you talk about having kept your family story sort of shrouded when you launched Special Needs Siblings and becoming more public with your story over time. And there are probably a lot of white families where that wouldn't even have been a consideration. So just for people to understand what privilege looks like in that situation, and what considerations you are making that are in addition to the concerns that other people with this experience might have. Let's dig a little more into the healthcare system, too, since we're talking about it! I'm wondering, in your experience, in what ways the health care system is working for patients like Christian, and in what ways it's falling short. I know we're touching on this when it comes to racism and gender inequity. But are there specific experiences that you can think of, with Christian’s care, where there were things that really worked and things that really didn't?

Jeniece: I think it depends on the provider. It always depends on the provider. You can tell when somebody cares. So I think that the more empathy … doctors, they're here to help and heal, but you can tell when somebody cares about you as a person, rather than you as a patient. And they're making your experience your own. That right there, I've had some really, really good doctors for Christian that I've been able to find. And that's through talking to other people and getting referrals. Because there are some that are very dismissive. Honestly, you're the patient … you come in, it is four o’clock … you ask a couple of questions, thank you. Here, we can diagnose him with this. And that's it. You can tell when somebody genuinely cares. I think that here in Georgia, I've had the pleasure of having a few of them that really go above and beyond, just listening. Sometimes they'll include the siblings in the conversation, simply asking, “Hey, guys, how are you? How have you guys been since the last visit?” And just remembering that it's a whole family here. So Christian’s diagnosis isn’t just Christian’s diagnosis sometimes. We’re all in this; we all are trying to help him and be there. And so when we have questions, it's not to bother you as the doctor. We genuinely just don't know. And realizing that with the things we don't know, not berating us for not knowing them. Because our lack of knowledge doesn't mean we're stupid; we just don't know some things.

Lauren: Well, I would say that you guys probably know more than most as well, having started your own non-profit. You’re no stranger to the research. So if you don't know something, and a doctor berates you for not knowing it … at that point, that doctor is just a horrible person.

Jeniece: Yes, they can go. And I think using your rights, I think that’s something  … I think as patients learn more about … writing a letter, complaining and telling them, this is how I feel about you and this is how I feel about your service. Even if you were to leave, I think sometimes you have to remind people and let them know, this is something you did really well, and this is something you could do better. Because doctors are not perfect, either. Doctors are people.

Lauren: And they’re people you're paying for a service as well!

Jeniece: Yes. So that's something in our healthcare system that I think works — when you can have that open communication and that open dialogue with your care provider.

Lauren: And it shuts down when you can’t.

Jeniece: Yes, and move on. And then knowing you have power in choosing. And that even goes back to your insurance. I think that's something that we don't do very well — insurance, and health care in itself.

I mean, it's a privilege to have access to health care. 

Lauren: That’s a problem.

Jeniece: There’s a big gap in our health care system.

Lauren: It’s what we were talking about earlier, that pediatric to adult care for someone who has cognitive disabilities, or is neurodiverse — that’s also a problem, isn't it. You know, the lack of guidance. 

Jeniece: Very different.Trying to work out if you're entitled to something or not.

Lauren: And what makes anyone not entitled to care, period.

Jeniece: You would think that. You would think we'd all want each other to be our best selves.

Lauren: But would you say that's also the role of capitalism and the role of the privatization of healthcare? 

Jeniece: Money.

Lauren: It’s money. Yeah. That's the problem.

Jeniece: It’s money. From the pharmacy to the pharmaceutical company … it’s all money. Even when you're trying to think about trying to do things healthfully, and living better and doing things in a natural way. 

Lauren: Even just buying organic food.

Jeniece: They don't want to talk about that. That's not something that you even hear from most of your providers. They want to push that medicine. They don't want you to be well, not live well; they want you to depend on them.

Lauren: Or they want you to eat organic food when you live in a food desert. That's a problem. And that also has everything to do with socio-economic status.

Jeniece: All of it. Big systems.

Lauren: It’s a vicious cycle, isn't it. Yeah. And it's a hamster wheel we're all running on, because we have no other choice.

Jeniece: No, we're all here. And I don't even have all the solutions for this.

Lauren: You don't have to; you're allowed to just complain. I give you full permission! But let's switch gears a little bit into something a little more positive. I would love you to give some tips to people tuning into this episode. As someone who is a caregiver and has empowered other caregivers, of someone who's living with disabilities. What would your Top Three Tips be for someone who suspects a loved one might be heading down this road of diagnosis? Or, maybe their loved one is already living with diagnosis. What would your Top Three Tips be for caregivers?

Jeniece: Get a journal.

Your feelings are going to fluctuate. And you're going to want to remember where you were, and how you were feeling when you heard it.

How you’re feeling the moment you accepted it, or somebody said something. I think that as time goes on, things change, feelings change. But it's nice to always have something to look back on and see your growth. Because the truth is, tomorrow is going to be so much different than today. And it's all okay. Self-care, making sure you're okay, and finding a good tribe; find your community, find people who support you. And if you get the vibe wrong, then they're not your people. It's okay! I don't care if it's a family member, or a friend or whatever. You have the right to let people go, and you don't have to explain it to anybody. I think that's something that took me a long time. And I think that we have to have permission to let strangers in, because sometimes strangers will become your best friend. And those best friends will become strangers. That's just the facts. Because nobody's going to really understand all of what it is you're feeling. You can’t expect them to. I don't know if that's three things …

Lauren: That is three, because I think the last one is, find your people — but also be able to let go the people who aren’t your people. Absolutely. What about Three Things for you, as a caregiver, that give you unbridled joy? Where do you turn when you need to be refilling your cup, or giving yourself a moment of pleasure. And that could be a guilty pleasure. It could be a secret indulgence. It can also be something you do out loud, and show your kids to do, and model your behavior. A comfort activity or something that gives you joy as a hard-working mom and an advocate. Where do you turn?

Jeniece: I turn off all devices.

Lauren: I love that. You turn somewhere by turning off!

Jeniece: That's my way of getting back to peace.

Lauren: Checking in!

Jeniece:  Checking in to just be present with myself. I am a sweets person. Oh my gosh, I'm trying to eat better. But when I say that red velvet cake, or some other cake or something, that is my … I have some hiding somewhere. I'll hide them from the kids!

Lauren: Six kids! You’ve got to hide those sweets from them! 

Jeniece: They will find it! They’re little hunters! And they all want a piece. And I’m, like, “You don’t appreciate this!”

Lauren: I gave birth to you! (laughs)

Jeniece: (laughs) So what else do I do? We have a garden that we're building. That's been a new thing for me, planting and just being outside. Even though I get fed up sometimes, just getting outside.

Lauren: And that's something, the kids can learn in the garden, too.

Jeniece: Yeah. They don't like to be out there for extended periods of time. But they do like to see … we saw our tomatoes growing this morning, and they were like, “Oh my God, that's really a tomato, not the one at the store!” 

Lauren: It's really satisfying, yeah. 

Jeniece: Yeah, and I was, like, “And you guys did this.”  So that's my way of sharing that with them. That's what I do.

I just kind of check out and check in with ourselves, eat sweets, and go garden!

Lauren: I think you and I have much in common on all three of those things!

Jeniece: All right then! We're gonna get all this conversation and we're gonna be friends!

Lauren: I warned you! (laughs) So what is your ask for listeners today? What can people do to support you, to support Special Needs Siblings and the community in the work that you guys continue to do?

Jeniece: They can go and follow us on Instagram, on Facebook, Special Needs Siblings. They can come on our website, SpecialNeedsSiblings.com. We have a ‘Donate’ button; you can reach out and volunteer with us. We have sibling boxes that we're doing now. And so we're always accepting donations; we're sending boxes to siblings all around the world, and sharing with them how special they are. And they open it up, and they'll know this is theirs, this is for them. Any way you want to get involved, you can send me an email, Jeniece@SpecialNeedsSiblings.com.  I'd love to hear from you guys anytime.

Lauren: Love that, and what's next for you in the advocacy journey — but also in your personal and family wellness? 

Jeniece: Oh, goodness, like I said, we're headed to Alabama. We're headed to Colorado, Chicago and California to go visit some doctors, to see what it’s like in other areas. Because honestly, I haven't been past New Orleans in my life.

Lauren: Love New Orleans, too!

Jeniece: It's a good spot! And our advocacy, with Special Needs Siblings, we're actually working on our podcast. We are going to be posting and sharing sibling stories.

Lauren: I love that.

Jeniece: Yes, we’re starting Siblings Speak Live. So we're going to have podcast stories with siblings, where they're going to be able to share their journey, their experiences, in their own words and for the community to be able to hear their voice.

Lauren: I love that. Remind everyone where they can find you … SpecialNeedsSiblings.com

Jeniece: Yep, and if you want to see me on Instagram, @JenieceDortch. And Special Needs Siblings on Facebook, on Instagram. We’re on Twitter, but we're not as active. We should do that.

Lauren: You have to pick your battles! 

Jeniece: I mean, I can’t do it all! (laughs)

Lauren: Exactly! The fact that you’re doing so much with six kids? I bow down! Oh, man! Well, Jeniece, it's been such a pleasure having you on the show. And I'm so excited to watch Christian continue to grow and thrive. And to watch your work with Special Needs Siblings continue to expand. I'm just so honored to have had you on the show today. Thank you for your time and your presence.

Jeniece: Thank you, Lauren. I really appreciate it. This was really fun. Thank you so much.

UNPD-Hacking-Healthcare-Social4-transparent

Download Hacking Healthcare: A Resource Guide

From messages of empowerment to maximizing time during your doctor’s visit, this is an invaluable guide intended to make healthcare more accessible.

Uninvisible Pod | Design by Nightshift Creative | © 2020