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Ep 17: Neurodivergence and Paving the Way for a More Equitable Healthcare System With Robin Ennis

Updated: Jan 13

Few things are more important to us as humans, especially to neurodivergent children, than access to quality healthcare.

But did you know that Black and Hispanic children are less likely to be identified with autism than white children?

This simple fact invites a closer look into the social currency that many of us take for granted and why the healthcare system looks vastly different to those of marginalized populations.

In today’s episode, we’re interviewing Robin Ennis, a social worker and the LEND Self-Advocacy Discipline Director at JFK Partners on her own experience with health disparities among BIPOC Individuals.

Robin shares her journey with hydrocephalus, how the misdiagnosis of her condition led to the loss of her vision, and how simply being heard by her providers might have changed the trajectory of her life.

Whether you come from an underrepresented population or not, this episode promises valuable insight into the ways healthcare can look a little different for all of us and how to use your voice to advocate for yourself and your children.

Also, don’t miss the very end where Robin shares how she’s making meaning out of her story. The reassurance and empathy that she offers her clients has paved the way for measurable progress in her field! Enjoy!

In this episode, you’ll learn...

  • [1:37] Our experiences navigating the holiday season with neurodivergent children

  • [11:40] Robin’s personal experience with health disparities among BIPOC Individuals

  • [21:09] How the misdiagnosis of Robin’s condition led to the loss of her vision

  • [31:27] Disability, grief, and how Robin is making meaning out of her story

  • [40:24] Client work and the impact of race on a neurodivergence journey

If you just can't get enough of us, don’t forget to join our newsletter and check out our other projects.

Links mentioned in this episode…

About Robin

Robin Ennis is the Founder of Robin Ennis, LCSW, LLC. In 2007, Robin graduated from the University of Denver with a B.A. in Sociology and Communication. Having a passion for helping others, and understanding her current situation of being a blind individual, Robin completed two research studies while attaining her undergraduate degree. These studies included the Sociology of Sound and Understanding Communication Between the Blind/Sighted Individuals. Both studies embarked on a journey beyond the human eye.

Continuing on the path to helping others, in 2009, Robin received her MSW in Clinical Social Work from the University of Denver, and is currently a licensed Clinical social worker in the state of Colorado. In addition, she holds national certifications in the areas of Life Coaching and Grief Recovery. In 2020, Robin completed a LEND (Leadership Education in Neurodevelopmental Disabilities) Self Advocacy Fellowship, through JFK Partners, and is currently serving as a Self Advocate Mentor. She has served on the Colorado Medicaid Healthcare Policy Finance Behavioral Health Taskforce, JFK Partner’s Advisory Council, Denver Regional Mobility Access Council’s Transit Advocate Task Force, and National Hydrocephalus Association’s Patient Partner Committee. Robin has worked with groups who have faced major life transitions, such as matters regarding personal loss. In addition, she helps guide the future and current generation of Social Workers, through the offering of clinical supervision. She has conducted employee trainings in the areas of disability, compassion/self care and conflict management/burn out.

Transcript for "Ep 17: Neurodivergence and Paving the Way for a More Equitable Healthcare System With Robin Ennis"

[00:00:03] Gwen: If you have an appreciation for honest and sometimes irreverent conversations about parenting and walking alongside neurodivergent humans, you are in the right place. I'm Gwen. [00:00:13][9.9]

[00:00:14] Kristen: And I'm Kristen, and together we have decades of experience parenting fiercely amazing, neurodivergent humans, as well as teaching, writing, advocating, and consulting. All of this has provided us with an endless supply of stories of inspiring failures and heartbreaking wins. [00:00:30][15.7]

[00:00:32] Gwen: Welcome to You Don't Want a Hug, Right? We promise to come at you each episode as our true selves, sharing the hilarity and delight in the midst of the hard of our journeys. You'll also hear directly from our kids at the end of each episode. [00:00:46][13.9]

[00:00:47] Kristen: Most importantly, we hope to remind you of your immense value as a human outside of the caretaking role you play. So grab a cozy blanket and a beverage and go hide in a closet nearest you. [00:00:57][10.3]

[00:01:03] Gwen: Do you remember how to podcast, Kristen? [00:01:05][1.4]

[00:01:06] Kristen: Barely. Barely. [00:01:07][1.1]

[00:01:08] Gwen: Friends were back in its 2024. What is happening? [00:01:12][3.9]

[00:01:13] Kristen: I don't even know. I'm not quite fully functioning yet. [00:01:16][3.1]

[00:01:17] Gwen: We took the month of December off and it feels like we've never recorded a podcast before, so. Bear with us. We apologize in advance that some or none of this is going to make any sense at all. However, the interview that we are bringing you today is fantastic. So we have confidence in that. [00:01:36][18.9]

[00:01:37] Kristen: We sure do. It's a great topic. We're really excited to bring it to you today. But first, we're just going to give you a little recap of our holiday season. [00:01:45][8.5]

[00:01:47] Gwen: Oh really? Why don't you start? Okay. [00:01:49][2.2]

[00:01:50] Kristen: Well. It was really unbelievably hard. I'm not going to lie, it was it was one of the harder holiday seasons we've had. Young adulting is no joke. Friends, you're not done that. The parenting journey. I'm really sad to tell you. And we never, ever. But but for reals, 20 is not even close to being fully cooked. And so it was just, um, pretty high maintenance. Graham had a really tough time, and he's been doing so well and just just maturing and making so much progress and working on himself and his anxiety that we thought this was going to be pretty good. It was nuts. It was really hard. The whole waiting for the present situation. We were like, we didn't want to jinx it because it felt like a couple weeks out. We were doing pretty well. Well, 3 to 4 days before Christmas, it kicked in pretty hardcore and by Christmas Eve he was complaining of actual chest pains. Yeah. Huh. And mind you, he knew what the present was. [00:02:56][65.7]

[00:02:56] Gwen: Of course. [00:02:56][0.2]

[00:02:57] Kristen: What the gift was. [00:02:57][0.3]

[00:02:58] Kristen: And so we had to give it to him. [00:03:00][1.3]

[00:03:00] Gwen: What was it? [00:03:00][0.4]

[00:03:01] Kristen: It was a new quest, like the new VR headset. Oh, that. My husband wanted more than Graham wanted. So it isn't even that he cares that much about this particular gift. So the chest pains ensued. We were watching Oppenheimer, which, as many of you may know, is a very intense, serious movie. I'm like engrossed in it and he's staring at me. I can see him out of my peripheral vision, staring at me, clutching his chest. And so finally we just had to stop the movie and say, would you like your Christmas gift? Because literally I'm going to stroke out over here. [00:03:36][35.7]

[00:03:38] Gwen: You're going to stroke out, but he's going to have a heart attack. [00:03:40][2.1]

[00:03:41] Kristen: Literally a heart attack. And then he didn't get his present from his grandmother, which he knew was going to be an adult Lego set. And so then the chest pains didn't stop until Christmas, the day after Christmas when grandmother brought the gift. So we've decided as a family that we are just going to give him his gift whenever the anxiety strikes. Because we've been working at this for many years, friends. And it's self-imposed madness, right? [00:04:08][27.4]

[00:04:08] Gwen: And it's not going to change. [00:04:09][0.8]

[00:04:10] Kristen: No, it's just not. [00:04:11][0.9]

[00:04:11] Gwen: It's just that it's anticipation and anticipation for that young man. It's too much. [00:04:17][5.7]

[00:04:18] Kristen: It's more than his little body can ever handle. [00:04:20][2.6]

[00:04:21] Gwen: Oh, yeah. [00:04:22][0.7]

[00:04:22] Kristen: We're done. [00:04:23][0.1]

[00:04:23] Gwen: Did he build the Lego set in two days? [00:04:26][2.1]

[00:04:27] Kristen: One day he stayed on night, and it was done in one day. And I had such relief. Also, FYI, if you recognize that you were. Behavior's making someone else anxious, coming in and telling them every ten minutes. I'm working on leaving you alone. Because I can see that you want to be left alone. Because I know that you like to be left alone doesn't help. [00:04:48][21.6]

[00:04:49] Gwen: Not helping. But. So the recognition? [00:04:52][2.5]

[00:04:53] Kristen: Yes. [00:04:53][0.0]

[00:04:54] Gwen: The recognition that you want to be alone. [00:04:55][1.3]

[00:04:56] Kristen: He's trying so hard. And I love him so much for it. But really, I'm. I'm ready to, like, astral project out of my body and go somewhere else. Greg's like, I think you need the VR so that you can go somewhere else. Yeah. [00:05:11][15.3]

[00:05:12] Gwen: Go to the beach in Brazil. [00:05:13][0.9]

[00:05:14] Kristen: Right? Okay. How was your Christmas? [00:05:16][1.9]

[00:05:17] Gwen: Well, we had kind of an opposite experience. This is probably the most successful localizing Christmas to date. [00:05:24][6.9]

[00:05:25] Kristen: Oh, that's very exciting. [00:05:26][1.2]

[00:05:27] Gwen: It is. We really didn't see. The digression that we usually see. Mhm. It's like the second school gets out we usually digress. Years. Yeah. Blink of an eye. And we really didn't see that. And I think it's because he has such a solid rhythm to his days. Uh we kept the same like he still went to work at the same times. And he had his same friends online at night time that he usually does. And I think that is just making all the difference for him. It was so cute. He's sitting at the table building his Lego set. He got a Land Rover like technic, so it has doors and pistons and oh, nice. Yeah. And it took him four days to build it, but he did not stay up all night. So he's sitting there and he goes, now would you say that I have like a a group of friends now. Oh you do buddy. You do have a group of friends because there's really like 3 or 4 beautifully quirky. Yes. Kids that he really loves. So that was a big highlight. And I think that's really helping him to find just like a sense of self and a sense of calm. And I mean, it's taken 16 years, but here we are. But here we are. [00:06:56][88.9]

[00:06:57] Kristen: Some good news? [00:06:58][0.3]

[00:06:58] Gwen: Yeah? [00:06:58][0.0]

[00:07:00] Kristen: Graham and his small circle of online friends are planning on a New Year's Eve get together at the bowling alley. And when I asked him who, he said my group of friends. Yeah. And I said, what are their names? He's like, you know, from high school. And I said, well, who are they? They're my group of friends. Well, I said, do you not remember their names? And he was like, no. [00:07:21][21.3]

[00:07:22] Gwen: I was oh, oh, okay. Cool. Yeah. But names and Graham. All right. It's not important. [00:07:29][7.7]

[00:07:30] Kristen: It's not. It's just not right. Hit us with a quick Rylan ism so that we can get to our amazing guests. [00:07:36][5.7]

[00:07:37] Gwen: Okay. Let's see. There's been so many. Let's do basketball. So he I think I talked about this before we left in December. He has joined a unified basketball team through Special Olympics here. And we've been on like a list for two years. And I forgot. And this coach called me and. Okay. Sure. I mean, we've been waiting two years, but this is great. And she is fantastic. So it's a group of young men. I think Rylan might be the youngest at 16. It goes up to like in their low 20s and half of them have disabilities and half of them are high school young men who act as partners. So this is kind of the direction I think Special Olympics is going. So he is on this team now, and this amazing coach forces them to run sprints, which for Rylan looks like, I don't know, a slight jog. And then he is absolutely stunned. By the time he gets back. But she's teaching them how to dribble like blow his head. Oh right. Yeah. So real skills like after the first practice I stayed for the first one because I always like to survey the scene a little bit and we get in the car and I was like, Rylan, in one hour you are no longer dribbling above your head. I am so impressed. Did you have fun? He's like, no, I don't know. I was like, buddy, you are smiling as you say that and you smiled the entire practice. You were having fun because I was. Yeah, I was just thinking about how maybe I can play varsity at my high school next year. Mhm. What's that was the take away. Oh my goodness Kirsten. I know. So it's like this like shoulders down experience where I'm so relaxed and then immediately says that I'm like shoulders up. It's okay okay how are we going to work through this. And then he says why are half the boys not shooting. And I was like, okay, so we're not understanding this concept of athlete and partner. Or that he needs a partner because he goes, oh, so like that one boy on the team who can't walk, really, he needs that. I was like, he does. Yeah. Oh, okay. So we should all give him the ball. I'm like, okay, we're just not going to explain. We're just gonna. [00:10:14][157.5]

[00:10:15] Kristen: Let it happen. [00:10:15][0.4]

[00:10:16] Gwen: Let it happen. So he's practicing every week and liking it, and he works at the grocery store with a lot of these boys. Oh, that's a man's. He'll start to have games on. On Saturdays. You can all fly out because they will be worth the trip, I guarantee it. [00:10:35][19.3]

[00:10:35] Kristen: It's true. Friends, she sends me video clips and it's really something that makes my day. All right. I'm going to give you a quick Graham ism so that we can get to our guests. Okay. Graham is trying really hard to not repeat himself when he's trying to have conversations with me. And so the other day, I was in the kitchen cooking and he was hanging out, and I could see him trying to think of something to say, and he came up with something amazing. He said, mom, I think my spirit animal is a bear because I'm laid back. But if you poke me, I'll attack. But I was like, that's pretty, pretty dead on. And I said, what kind of spirit animal do you think I am? He said, I think you're like a deer because you're elegant and sometimes fragile. [00:11:21][45.9]

[00:11:25] Gwen: What? [00:11:25][0.0]

[00:11:26] Kristen: Okay. Elegant and fragile. [00:11:29][2.1]

[00:11:29] Gwen: Do you think he means you just need to get some tougher skin when he's staring at you? [00:11:34][4.2]

[00:11:34] Kristen: Maybe, like I look like a deer in the headlights when he finds me in the house. I don't know. [00:11:40][5.5]

[00:11:40] Gwen: Accurate. That's accurate. Okay. Do you want to introduce our guest? [00:11:45][4.9]

[00:11:46] Kristen: Yes. So we're white. We have access to health care. We have the time to pursue and to push against roadblocks. We're believed for the most part, and one we're not believed. We have that social currency that we need to keep searching until we find somebody to believe us. And we know that that's not the same experience that people of color are having. And so I want to talk a little bit about that health disparity that we know that exists. And according to the CDC and their Adam surveillance data, which we've talked about before, which is that, um, survey across the country of eight year olds with autism. We know that black and Hispanic children continue to be less likely to be identified with autism than white children, although the good news is that that gap is narrowing due to more outreach to those minority communities. But these differences for white families and then for black and Hispanic families are mainly due to socioeconomic or other barriers that lead to delay or lack of access to evaluation, to diagnosis, and to services throughout their life. So we know that that racial tension exists in all different kinds of systems, but we don't know what that's like, so we can't speak to that. That's why I'm so excited to have our guests with us today, who I admire and respect so much for her work and all she does in the world to support our families and her personal experience. So Miss Robin Ennis is with us today and she is a social worker and the LEND Self-Advocacy Discipline director at JFK partners. Robin has a BA in Sociology and Communication and an MSW in Clinical Social Work from the University of Denver. She is a licensed social worker in the state of Colorado, and holds national certifications in the area of life coaching and grief recovery. [00:13:46][120.1]

[00:13:46] Gwen: What? I didn't know that part. [00:13:48][1.3]

[00:13:48] Kristen: I know I can't wait to talk about all these parts. [00:13:50][2.0]

[00:13:51] Gwen: Girl. Right. [00:13:52][0.9]

[00:13:52] Kristen: She was a lend fellow, uh, in 2019, 2020, just as Gwen and I were also lent fellows in that program, Robin became unexpectedly blind at the age of 18 due to a medical complication with hydrocephalus. And in her role as the lend self-advocacy discipline director, she recruits and mentors other self-advocates and contributes through her lived experience. So she teaches about people first language, identity, first language, and ableism. Uh. It is Robin's mission to make sure everyone of all abilities has an equal voice. Welcome to You Don't Want a Hug, Right? [00:14:32][39.7]

[00:14:33] Gwen: Do you feel like we can just be done now? [00:14:35][1.9]

[00:14:36] Kristen: I think that was quite the introduction. [00:14:38][1.7]

[00:14:38] Gwen: I think, Robin, just merely introducing you has done a world of good to the world. [00:14:44][5.4]

[00:14:45] Robin Ennis: Thank you both. I'm grinning from ear to ear. I appreciate Kristen and Gwen, you both allowing me to be on the podcast. I am looking forward to to talking with you. You both. [00:14:57][12.0]

[00:14:58] Gwen: Well, thank you for being here. We're honored. [00:15:00][2.1]

[00:15:01] Kristen: So, Robin, tell us a little bit about your personal experience and how you came to be a part of the disability community in the way that you have. [00:15:09][7.6]

[00:15:10] Robin Ennis: Right. And so before I dive into that question, I, I want to go with how you said that the disparity between people of color and lack of health care is, you know, um, narrowing. And there is more outreach. I also to think that with the increased outreach, there's also a level of more empathy, I feel and, um, supportive ness, which is helping people of color be able to trust their providers, you know, more, um, which is is typically hard in, um, marginalized communities. So I think that that could probably be a reason for the disparity and decreasing. [00:15:50][40.6]

[00:15:52] Gwen: Robin, have you felt a difference in your experiences in health care in the more recent years? [00:15:59][7.0]

[00:16:00] Robin Ennis: I have and I'm going to try not to cry when I say this. Um, I have and so when I became blind at um, in 2002, when I was 18, about to be 19, I definitely was not listened to. Um, and so that, uh, I mean, that can really make a person feel alone within that, the health care system. I mean, of course I had my family, but when you're not listened to by a person, you can really has the power to help you physically. Um, it can be very scary. And so when I became blind, I. Did lose. I trust within the health care system and fast forward to 2006. My neurosurgeon during that time. I remember we were talking about symptoms and he said, well, if you're not feeling good, just just let me know. You know, we can go from there. And I remember bursting into tears and saying, well, I tried, you know, before, but nobody listens to me. Um, you know, he, uh, in that moment, it was very humbling. He apologized for my experiences that I had. Um, and he said really forward, that he trusts me. And when I'm not feeling well, he will listen to me. Wow. So that was very comforting to hear because I did not hear that from my previous providers. [00:17:29][89.3]

[00:17:31] Kristen: Robin, can you tell us a little bit more about that experience when you were 18 and how being a black woman impacted that outcome? [00:17:39][8.3]

[00:17:40] Robin Ennis: Right. So. Uh, when I was 18, um, when I was away, uh, for my freshman year of college, my I got sick again and my symptoms from my hydrocephalus started to be present. And, um, I was going to a few emergency rooms, and I was flying back home because I went to school out of state. I was flying back home to see my doctors. And, um, unfortunately, I was, uh, misdiagnosed with a case of depression. Um. And I feel like I wasn't being listened to when I was doing that. I wasn't depressed and I was happy to be, you know, a freshman in college, you know, experiencing all, uh, all that entailed, um, because I really had to rally for myself to be able to go away to school because my parents were fearful that I would get sick. And so. So the fact that I got sick when I was away at school is, uh, interesting within itself, but I, I had to really tell that, try and get them to, to listen to me, um, during that, that period. And so back then, I honestly, I didn't view my race as a factor, um, being a teenager. And I think I was talking about this with, um, my, my mom, I don't know, a few years ago, but I think that because I was so being in Colorado, um, there's only 4% of African Americans within the state. And so with my hydrocephalus that I've had since I was a baby, I went to private schools, um, because there were a lot smaller class sizes. So with that said, is that in 90% of, well, 95% of the time, I was the only African-American student in the classroom. So I was used to being the only one of my race. Um, and then when I went to high school, I was the only one in the whole school. [00:19:45][125.0]

[00:19:46] Gwen: Wow. [00:19:46][0.0]

[00:19:46] Robin Ennis: Well, yeah. So I, I when I got sick, I didn't think of. And it's interesting because I what I did. Um, so to back up a little bit, I did have a racial instance in, in high school. So it's, it's odd that I didn't think about my race when I got sick, a reason of me not being listened to. But that didn't factor in until most recently when I went to, uh, the Graduate School of Social Work and I started to learn more about social justice and, and, um, health disparities among people of color, that I realized that I fit into that, that statistic. [00:20:25][38.8]

[00:20:27] Gwen: And when you mentioned, Robin, that you went to multiple emergency rooms and trying to get help, is that because you didn't feel like anybody was listening to you? [00:20:36][9.7]

[00:20:37] Robin Ennis: No. So there's actually the first emergency room I, I went to, I felt like I was, um, listened to. And then the second one I went to was more. So, um, I'm trying to figure out how to say this out. Okay. And it but it was more geared towards children. Um, and so that type of hospital was more familiar with, um, hydrocephalus because it is typically more so diagnosed in, in children. [00:21:08][30.2]

[00:21:09] Kristen: Robin, can you, can you tell us a little bit about hydrocephalus and how that impacts you throughout the lifespan? [00:21:16][7.1]

[00:21:17] Robin Ennis: Okay. So hydrocephalus is an abnormal accumulation of cerebral spinal fluid in the brain. And so everybody has that fluid flowing throughout their body. Um it helps cushion the brain and spine from from injury. Uh, the thing is, is that with hydrocephalus the fluid doesn't. Well, there's a blockage in the brain for some, um, reason. And it could be multiple reasons for me. I have a arachnoid cyst, and so that's why the fluid wouldn't drain properly. And so when I was two months, my mom. Well, actually, even before then, my mom noticed that. And the fontanel first, um, puffy and that fluid was building up there. And so that was the reason that she took me, um, to my doctor, and they, uh, diagnosed me with hydrocephalus. And, um, if it wasn't for my mom's persistence, I would have passed away, uh, a week later. But I was rushed into surgery and, uh, a saint, uh, which is a small little device, and it's placed in the ventricles of the, the brain, and they have a connector that, uh, connects it. The connector goes through the ventricles and then on the other side of the sign. And so, um, there's a tube that goes down in, um, well, so this can either be placed in your brain or it can be placed in your heart or back, and mine's placed in the brain. So I have a tube that goes from the sun down my neck into my abdomen area. And that's where that fluid is, um, released. And, uh, it's definitely a lifesaving, um, tool. But just like any other form of technology, it, it has its, uh, malfunction rate. And so within the first two to. Three years of surgery has a 50% failure rate. So that's why a lot of children who go to the E.R., it's because of shunt related problems. [00:23:26][128.7]

[00:23:27] Gwen: And so did yours start malfunctioning at age 18. And it just needed to be directly taken care of. And that's where your medical care fell short. [00:23:38][11.1]

[00:23:39] Robin Ennis: Right. So I had quite a few surgeries from two months up until the age of six, and then from the age of 6 to 18, I was healthy and I didn't have the need for for any surgeries. And so, yes, that's when my license started malfunctioning. And I remember this was actually I'm presuming it's just back later, but my senior year of high school. And by the way, so I'm going to backpedal a little bit. Um, so with hydrocephalus it's invisible. So nobody knows that I have it unless I told people. And so. So that I wouldn't be bullied because I was already bullied in the sixth grade, but my parents were fearful for my safety. And so it was as in need to know basis. And so Lee staffs, um, and teachers knew about my, my medical condition, not my friends. I it wasn't until my junior year of high school that I felt comfortable in telling my two best friends. And so my senior year of high school after P.E., one of my my best friend, she said, you know, your your two. It's twisted. And I remember looking in a mirror and I, I panicked. But at that time they said that I was again, fine. So that's why my family, my parents felt comfortable in letting me go to a state, Oklahoma, where my mom's sister lived because I still have family nearby. But yeah, I was a good 12 to 13 years that I went without surgery. And so it was my freshman year. I had fainted and I never fainted before then. Um, I remember I was in a psychology class and I, I had this massive headache. And so that's a symptom with hydrocephalus. It's it's not a normal migraine. It I mean, it's a migraine times ten. And I remember putting my head on the desk and I woke up and I was on the floor with students surrounding me. So then that's when I went to the first emergency room. Oh, and then after that, when I went back to my dorm room, I threw up, um, which is another symptom of hydrocephalus regurgitation. And so my aunt took me the following day to the emergency room, and, um, they wanted to do an MRI, and they called my neurosurgeon in Colorado, and he said, no, just do it a CT scan. And I remember the doctor at the emergency room. He was like, wow, you're really lucky. You know, he your neurosurgeon in Colorado came out of surgery to, um. To talk to me. Um, and the reason I'm getting emotional is because I keep wondering. Yeah. I don't know how lucky I am now, thinking back. And I keep thinking that I wonder if my neurosurgeon during that time, if he would have just let them do an MRI. They would have picked up on something. Um, but, uh, so then I was, um, released from the emergency room, and I flew back home for the holidays, and my, um, pediatrician put me on Paxil because they can associate my symptoms with being, um, depressed. And so by that point, I was, um, collapsing 3 to 4 times a week. [00:27:08][208.7]

[00:27:09] Kristen: Oh my goodness. [00:27:09][0.2]

[00:27:09] Robin Ennis: Because, yeah, with my hydrous actually, it impacts your balance and coordination and your motor skills. And so I, my legs would just give out at any given moment. And so, uh, after that new year. So what was it, 2002 maybe like January or February of 2002, I realized that the the Paxil wasn't helping the symptoms, and I started noticing that I was becoming more pessimistic and even my mom, because if you're not already, if you're not depressed and you're put on an antidepressant, I'll have the reverse effect. Mhm. And so I stopped taking it and then I was still collapsing. And by this point my muscle aches started to settle. And so I was having constant muscle aches where it would hurt to lay down at night and go to sleep. And so then I was put on Celebrex to try and help with that. [00:28:08][58.0]

[00:28:09] Kristen: And not Robin. Nobody was nobody was questioning whether or not it was your hydrocephalus. [00:28:13][4.2]

[00:28:14] Robin Ennis: No, no. Um, so then I flew back home and my my mom and my my sister, my sister's ten years older than me, and she's in the health care field. And so they suggested that I get, you know, that we get a second opinion. And so then I saw, um, the chief of neurosurgery at the same hospital, and he said, you know, I don't know. I don't know what's happening. I'm not for sure. And at least he was honest. But I feel like and I do this as a provider, now that I don't know the answer, then I will look and search or find somebody who does. So I feel like thinking back now that that was an inadequate answer to give me. So yeah, he just said I don't, I don't know. And that was my second opinion. Um, from the chief of neurosurgery. So. Um, so yeah, I was just left again with no, no answers on why this was happening. And then it wasn't until the end of my freshman year of college when I when I came back home, I started noticing that I was having visual changes, like I couldn't see the mouse on the computer as easily as I could before or in my peripheral vision. I couldn't tell that somebody was standing there. And so my mom made an appointment with my eye doctor and she looked in my eyes and I, I will never forget this is because she had an intern come and look in my eyes and she asked, and have you ever seen anything like that before? [00:29:56][101.9]

[00:29:57] Gwen: Um, wow. [00:29:58][1.1]

[00:29:59] Robin Ennis: And she called my neurosurgeon and this was on a Monday and delayed. I don't think that they recognize me immediately behind it. Um, because they were like, well, yeah, we can see her that Friday. But it was my eye doctor. She's like, no, I it's really important that you see her. And so they, they did see me and they rest me into surgery and they, um, they realized that my sight was completely demolished. Yeah. And so that's, that's why the the silhouette was building up in my brain so much that it didn't have any space or anywhere to go. So it went to my optic nerve. Um, and I started building up there. [00:30:43][43.9]

[00:30:44] Gwen: But your eye doctor is the one who called it, not your neurosurgeon. Right. [00:30:49][4.9]

[00:30:49] Robin Ennis: My eye doctor. Yeah. [00:30:50][1.2]

[00:30:51] Gwen: Because you made an eye equation. [00:30:52][1.1]

[00:30:54] Robin Ennis: I did, and typically. So with hydrocephalus, visual disturbances can, um, is a symptom. And I in thinking back I was like, yeah, you know, my neurosurgeons didn't even look at my eyes then. And so and I didn't know that I didn't know that blindness could be, uh, attributed to it if it went undiagnosed. [00:31:17][23.1]

[00:31:18] Gwen: Right. Um. [00:31:18][0.3]

[00:31:20] Robin Ennis: But yeah, in hindsight, I do think back in and like, yeah, I know neither one of them looked in my eyes. [00:31:25][5.7]

[00:31:27] Kristen: Robin, that must be so painful for you to think about the ways in which your life would be different if the providers in your life were listening to you. [00:31:38][11.1]

[00:31:39] Robin Ennis: Yeah. It is, uh, it is difficult, you know, and I think that, you know, I attribute like disability, even with my own clients as a grief process. So, you know, I mean, I've definitely accepted it. But there are times especially, you know, when I think back and I'm like, I this does make me angry. And it makes me makes me sad. And, you know, even 20 years later, it's still, you know, I still think about the what ifs. What if they would have listened to me, you know, where would I where would I be life wise? Because I was I was a teenager, um, and I was developing into trying to find myself. And I don't even know what I would be, you know, like, because now, at this point, I've been blind more than I have been inside it. So I really don't know how that impacted my, my identity growing up. [00:32:38][59.1]

[00:32:38] Kristen: So I think it definitely in the process of grief. There's a lot of meaning making, and I'm. I'm wondering if your work with families now helps you in that way to make meaning out of your experience. [00:32:54][15.9]

[00:32:56] Robin Ennis: It does. You know, I, I, I remember one of my supervisors, uh, in my previous job saying, you know, you may not feel like this right now, but in the long run, your experiences are going to help somebody else. Mhm. And so I do believe that me providing a safe space for, for families and for individuals. It's very rewarding because I feel like I'm helping them feel heard when I didn't feel hurt. Um, when I did it though listened to by my providers during that time. So I try to I try to be the level of help that I received, but also to the help that I didn't receive. And so for instance, um, you sure my, my neurosurgeons didn't listen to me though, when I was losing my, my eyesight and my mom sound and opthamologist. Um, because that's another thing too, that I was supposed to be seeing an ophthalmologist versus an optometrist. Mhm. And nobody had really told us that before. And so the opthamologist that I saw when I was losing my eyesight, he truly is a calm spirit. He sat there and listened to me when I broke down many times. And throughout these, these 20 years and I base ah, you know, he's my favorite provider. And he taught me what it was like to be an empathetic provider and to hold space for other people. So I modeled after him, um, in regards to that. And, and he definitely knows my, my feelings towards him. And so my last appointment with him was in September, and I broke down and cried because he's retiring. And although I know he has to retire, I'm like, no, you can't. It's it's it's bittersweet and it's scary because then again, I have to gain trust in a new provider. But I, I do trust him. And he said that the person that he that's replacing him, he'll fill them in on on what I've been through and and all of that. And so I, I do trust him. [00:35:23][147.0]

[00:35:24] Kristen: Robin, what did he teach you? That you've been able to help your clients with, the families that you work with, navigate some of those racial biases and those barriers that you encountered? [00:35:36][11.8]

[00:35:38] Robin Ennis: Right. So he's actually, um, Caucasian. So he doesn't necessarily know firsthand what it's like to navigate, um, the health care in terms of disparities. But what helps me with my clients is the level of empathy like my provider, um, had with me. So, sure, he may not know my exact experiences, but he listened. He educated himself on how he could best help me in in such a big system where, um, my voice hasn't been heard in the past. And so he was my advocate. And so that's what I try to be for, for my, my clients, um, especially those who have openly professed fear and distrust, um, my clients of color in navigating the health care system. You know, whether it be fear, uh, of being misdiagnosed or fear of being stereotyped. Yeah, actually, I think those are the two. Fear of being misdiagnosed for fear of being stereotyped because of their their racial background. And so sitting there and, um, validating. Yeah. You know, it is scary navigating a system where historically we've been oppressed or not listened to and taken advantage of. Um, and so sitting with them in their pain and also to offering reassurance in that, you know, in today's society, although we still have a long way to go, we've made a lot of progress and, and so is trying to figure out how you can be able to take that level of control back and how you can impact your house. So that means, like searching for a provider that you feel comfortable with. And you can tell when you feel comfortable with somebody by the physical feedback that you get, you know, trusting your your judgment. And and it's okay to, you know, um, if you don't feel comfortable with a provider, it's okay to find one that you do feel comfortable with. And, um, it's really trying to learn how to advocate for yourself in realizing that even though the healthcare system is a is quite large and daunting, that you do have a voice and it matters, and it's important to find somebody who listens to that voice. [00:38:00][142.6]

[00:38:02] Gwen: That seems so. I mean, it doesn't even seem like it needs to be pointed out, you know, from the perspective that maybe Kristen and I come from or something that we needed to even learn. So thank you for pointing out that something so basic and humane for some of us is something that other people have to learn or don't naturally get. Because I think you're saying, well, he just he just listened. And by listening without assuming that he understood. That's really all you needed, is what I'm hearing you're saying. And that's something that every provider and every human being can do. So your your experience seems to me so universally relatable for all of us that if we can just listen and then humble ourselves enough to learn through the eyes of somebody else and then investigate based on what they're saying. I don't know, it just feels like we could have so much injustice eradicated just through that simple act. Right? [00:39:19][77.2]

[00:39:20] Kristen: And I think, too, that it's important for the disability community and the neurodivergent community to think about those in our community that are having this different experience where their child, who's black or brown, is getting suspended and is not getting treated in the same way as their white counterparts in a school setting, in a clinic setting. And that a lot of those symptoms and signs are being ignored or not listened to. We need to support other families, other parents and individuals in our community to make sure that they're heard and to make sure that we hear them right. [00:40:02][41.9]

[00:40:03] Robin Ennis: And you know, that that collaboration and partnership it's making, that's that's the key. It usually makes people feel less alone. And, and, um, it makes them feel heard. And it can be very isolating when you feel like nobody gets it, what you're going through. And, um, in terms of the environment that you're in. [00:40:22][19.6]

[00:40:24] Gwen: Robin, do you have any examples of clients of yours first, can you talk to us a little bit about the actual work that you do with clients, and then maybe share a couple stories that you've seen that race makes this journey of neurodivergent even more difficult? Do you have any examples that might just kind of illustrate that for our listeners? [00:40:48][24.1]

[00:40:50] Robin Ennis: Right. So as you ask that question and I'm thinking of a few, so I in terms of my employment background, like Kristen mentioned, as I work for for JFK partners and I'm also a private practice, um, mental health therapist. Um, but even before then, I worked for a community center board, um, in Colorado. And, um, I was a service coordinator. And so I had a caseload of, uh, people of varying demographics. And, you know, there were times where parents on my caseload would open up and parents of color, and in talking about their experiences about navigating different resources or, um, different systems and being a person of, of color. And it's overwhelming and daunting that in general, but especially because when it comes to disability to and not to digress, but when it comes to disability, different communities view disabilities differently. And so depending on whatever culture and interacting with their view of disability may be completely different. So it's starting with with that notion and understanding in the family dynamic and understanding the perception among the members of what is possible and what is not possible for that particular, um, individual. And so once you start to navigate that, then it's like, how does that particular culture or race impact the way that they interact with medical professionals? Right. Because of the historical trauma that some people have faced or at some races have faced in the healthcare system, some races don't feel comfortable in asking questions to providers because they're viewed as being the person in power. Right? The person who knows. [00:42:58][128.7]

[00:42:59] Kristen: That authority figure right? [00:43:01][1.3]

[00:43:01] Robin Ennis: There is already authority figure. Well said. Yes. And so sitting in those moments and in offering reassurance. And so I've had quite a few examples where that's come into play and well, okay. You know, sure. You know they may be in has authority in terms of your care, but you have authority in terms of your life. You know, everybody's different and everybody's care looks different. And it's okay to ask questions, you know, and if if a provider is not open to hearing your questions or, or listening to your concerns, then again, that's not the provider for you and I. It's something that took me a long time to feel comfortable with and to navigate. So I understand how scary and daunting that can be for for our clients. But it's it's giving them the permission to take charge of their, their own care. And that, you know, doctors are human beings too, and they don't know everything. Right. Like people. I think that, you know, it goes back to experts, right. So people think that experts don't need to be challenged or that they don't need to constantly learn or grow. But I, I think the opposite. I think everybody, you know, nobody has all of the answers. And it's important to be able to to be able to recognize that and to if you feel like a part of your care is not being looked into, or if you have questions to be able to ask, whatever you you need to ask. When I was a service coordinator, that's why I really sought to collaborate with parents so that they could be involved in the process and understand what it's like to navigate different systems with IDD, intellectual or developmental disabilities, and how to best be prepared, you know, so that when they enter into a medical office, they can understand the jargon, be thrown at them, or they can be able to explain their child's needs and that translate even to my private practice with all of my clients, but again, especially those who are from marginalized populations sitting there and understanding their sphere as well. I don't know if I, I don't feel heard, I feel like they're just diagnosing me because they think that I'm an angry black woman or they, you know, they think that I'm I'm just making up my team that I'm going through. And so sitting with them, with that level of fear and saying, well, you know, I get it, I hear you. And how can we be able to use those experiences to advocate for yourself, to get them to listen to you? And it may be a rocky journey, and it's trying to figure out how to the state, how to get comfortable with being uncomfortable, and in showing people how to treat you. Moving forward. [00:46:01][180.5]

[00:46:03] Kristen: That's wonderful. Robin, how you've added your passion for self advocacy is really changing other family's lives. I mean, it's not just empathy, but it's also empowering. Like you said, being comfortable, being uncomfortable and pushing back and finding those providers that are really going to listen and understanding that you do have some agency. I mean, that's and and having to push through all that fear and all of that historic trauma and all of those things. It's it's it's pretty amazing that you're able to do that for others. And I'm so very grateful that you were vulnerable with us today, and you shared yourself and your story, and we're grateful for you and just love that, the work that you're doing. Thanks for being with us today. [00:46:51][47.9]

[00:46:52] Robin Ennis: Thank you both again very much. And I am grinning from ear to ear because I it proves I appreciate the space again that you provided me to be able to, to share my stories with, with others. And so I hope they, they find it beneficial. So thank you for giving me this platform. [00:47:10][17.5]

[00:47:11] Gwen: Yeah. Robin, it's been such a pleasure. Just to meet you. If anybody else wants to reach out to you. Is there a good way that they can find you or find your practice online? [00:47:22][10.9]

[00:47:23] Robin Ennis: So I do have a website and it's [00:47:27][3.0]

[00:47:40] Gwen: Wonderful. Well we appreciate the work you're doing in the world. We appreciate you letting us shine your voice today instead of ours. [00:47:47][7.5]

[00:47:48] Robin Ennis: Thank you. Thank you again. [00:47:49][1.3]

[00:47:50] Kristen: We look forward to continuing this conversation with others in our community. So thanks again. Bye everybody. [00:47:57][6.7]

[00:47:57] Gwen: Thanks for listening all. Bye. [00:47:59][1.4]

[00:47:59] Gwen: Thanks for joining us for this episode of You Don't Want a Hug, Right? We'd sure appreciate it if you'd subscribe to our show and your favorite podcast app. And if you want to win listener of the month, you can rate and review the show, preferably with five stars. [00:48:15][15.8]

[00:48:16] Kristen: If you'd like to stay up on all our happenings, resources and bonus material, join our newsletter at [00:48:21][5.2]

[00:48:24] Gwen: Remember, even the best caretakers make panic rooms out of their closets. No judgment here friends. So shoulders back, double chins up. We are all in this together. [00:48:24][0.0]

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