Being a parent of neurodivergent children is challenging enough for most of us. But what does that look like when you introduce racial bias into the mix? How does that affect the way parents and children with disabilities are perceived by their schools and their providers?
In today’s episode, we’re interviewing Jackie Bess, a wife and mom of three boys with autism whose story is an excellent demonstration of the intersection of race and disability.
Jackie describes many of the struggles she faced throughout the autism journey including how she has learned to serve as her sons’ most powerful advocate.
You’ll learn some of the strategies she has developed to help keep her sons safe, how her experiences have impacted her own health, and why it’s essential for Jackie to ensure that her voice is heard.
This is an episode sure to resonate with many people of color who are raising children with disabilities. Also, don’t miss the very end where Jackie shares what she loves most about each of her kids!
In this episode, you’ll learn...
[1:46] Jackie’s background and how she became an advocate for children with autism
[5:59] The story of how Jackie’s three sons came to be diagnosed with autism
[24:11] Strategies that Jackie and her husband use to keep their sons safe
[34:12] How Jackie’s experiences have impacted her own health
[38:58] Why Jackie has to ensure that she is taken seriously
[51:19] What Jackie loves most about each of her kids
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 Jackie Bess
Jackie is a wife and mom of three boys with autism whose story is an excellent demonstration of the intersection of race and disability. In addition to being a parent CNA for her sons, Jackie is a licensed marriage and family therapist who serves as a board member of the Arc of Aurora and a member of the Advisory Council at Developmental Pediatrics for Children’s Hospital, among other achievements.
Transcript for "Ep 18: Autism, Unconscious Bias, and the Intersection of Race and Disability With Jackie Bess"
[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][9.4]
[00:00:13] 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][17.0]
[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 heart 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: Good morning, my friend. Good morning. How in the heck are you? [00:01:08][4.3]
[00:01:09] Kristen: I'm not as good as you because you have so much sun on your face. And I know that's rarity in Michigan. I can't even see your eyes. [00:01:15][6.6]
[00:01:16] Gwen: I have seen the sun three times this week. It's amazing. Three times. And it is out today and we have 15in of snow and it is so gorgeous. The birds crystal outside my window. Oh, no. Anyway, enough about us. We have a very, very impactful conversation for you today that we have been anticipating. And I am going to let Kristen kind of introduce what this episode is going to focus on. [00:01:45][28.9]
[00:01:46] Kristen: Yeah, thanks. So we had the honor of talking with Robin Ennis in our last episode and really hearing a little bit about her experience with the intersection of race and disability with her own experience, and then with the clients that she serves. And we want to continue to have that conversation today with Jackie Bess. And Jackie is a mother of children with autism, and she's going to talk to us today about her experience raising these amazing boys and the things that she needs to focus on in order to overcome some of those barriers that come up because of race. So I am happy to introduce Jackie. Jackie would love to hear a little bit about you and your family. [00:02:31][45.3]
[00:02:32] Jackie Bess: Hi. Thanks for having me on Kristen and Gwen. I really appreciate this opportunity. I'm Jackie, I'm a wife and a mom of three teenage boys on the autism spectrum. Jackson is my 15 year old who was diagnosed when he was eight years old. Vincent is my 14 year old and he was just diagnosed last year. Gavin, my 12 year old, was diagnosed at five years old and that was shortly after Jackson was diagnosed professionally. [00:03:06][33.8]
[00:03:07] Gwen: Hold on. Jackie? Yes. Can we just take a breath here for you? Just like to have a collective. You Don't Want a Hug breath for our friend Jackie? Yeah. [00:03:16][9.5]
[00:03:17] Kristen: Let's just take that and take that in. [00:03:20][2.6]
[00:03:20] Gwen: That's a lot of watches. Um, which Krista knows all too well, having triplets and various stages of autism. So we see you, and we hear you, Jackie. Thank you for being here. We can't wait to hear more. All right. I interrupted you continue. No. [00:03:35][15.0]
[00:03:35] Jackie Bess: It's okay. All right. So professionally, I'm a licensed marriage and family therapist, and I'm also a parent CNA for my sons. I wasn't able to continue my work professionally because of the demands of having three sons on the autism spectrum with all the providers, the school meetings, the calls from school, the pick up your kid or else we're calling the police calls. And so what I did was I stopped working full time and I still do some contract work on the side doing assessments and things. I became a parent CNA in order to continue to take care of my kids while still bringing in income, and that was very helpful. So that way I could be available for other meetings and the providers. And since then, I became a member of the board of the Arc of Aurora, so I can help continue to support families like mine. Recently, I became a member of the Advisory Council at Developmental Pediatrics for Children's Hospital. Um, and I've been able to participate in a few other work groups with JFK partners and children's hospitals, including a group which created the social story autism and the police, a book for black and brown kids. And that was really amazing to do because that happened right after the George Floyd murder, as well as Elijah McClain. McClain. Yes. And so things were really hot at that time. And Children's Hospital wanted to work with the police on this one, and that was very difficult for me. Um, so lastly, I'm an advocate for medical marijuana and autism. I was one of the parents who lobbied and testified at the state Capitol to get autism added as a qualifying condition for medical marijuana in Colorado. Um, so all three of my sons are medical marijuana patients. I found that it helps their anxiety, as well as helps them be able to focus and be able to do their schoolwork. It's been a great help for them. [00:05:58][142.8]
[00:05:59] Kristen: Yeah. Jackie, first, I would love. To know a little bit about Jackson, Vincent and Gavin and what you love about them and kind of what's the biggest challenges that they're facing now. [00:06:12][13.1]
[00:06:13] Jackie Bess: So, Jackson. He was born premature, and so he was about two and a half months premature, and he only weighed 2 pounds. So as he was growing up, everything was it's prematurity. So there were no red flags of autism. He actually started talking early on, maybe earlier for most babies. However, he didn't walk. He was behind in some areas. And. It just was. Well that's just because he was premature. Mhm. And so his biggest challenge has been. School being accepted at school. So starting at my son was in preschool. I had him go to preschool for two years and we have wonderful preschool teachers. But when he went to kindergarten, that's when everything changed. Unfortunately, they perceive my son as being bad and they didn't provide him with the appropriate commendations to help him. So in preschool, it was, you know, there was more accommodations because the preschoolers and he had two years with the same teacher to get to know him and to understand. And she was very kind to him. And she, you know, to be honest, she was Hispanic. And so we didn't have, uh, any type of. Issues related to race at that time. And then when he went to kindergarten, we had a Caucasian teacher and she just perceived him as bad, unfortunately. So when he would have any type of sensory issue, she didn't see it as that. She saw it as he was doing work avoidance. So if he would leave the classroom, instead of trying to figure out why he left the classroom or why there was an issue at that time, or pinpoint it, she would just assume he just doesn't want to work. He's just being lazy. He's just being oppositional. And this was in kindergarten. Wow. After having two good years in preschool and the preschool was part of the school, so it wasn't like it was a totally different setting or anything like that, or they couldn't, or she could have talked to the preschool teacher to get a better, better understanding of Jackson. So in kindergarten, the school called the police on Jackson. Yes, for certain pencils in class. So I was called to the school and my son, my five year old son, was sitting on a beanbag in the principal's office with two of our police officers. But. Bulletproof vest. Wow. And, you know, the whole shebang sitting with him. No other staff was in there with him. It was just two police officers and his little self on a beanbag. And I walked in and the police officers were so angry. They were so upset at the school. And they were the first ones to tell me about an IEP. Why? Oh, yeah. [00:09:39][205.4]
[00:09:39] Kristen: Oh, what? [00:09:39][0.2]
[00:09:41] Gwen: The police officers. [00:09:42][0.8]
[00:09:43] Kristen: Wow. [00:09:43][0.0]
[00:09:44] Jackie Bess: Yeah. So? So that's what started me getting it. All the things. [00:09:49][4.4]
[00:09:50] Gwen: You were forced in. [00:09:50][0.8]
[00:09:51] Jackie Bess: Yeah. And from that point on, it was an uphill battle because we didn't know he had autism still. So that was a five year old. [00:10:01][10.0]
[00:10:01] Gwen: Were you able to walk through that IEP process and get one successfully at that point? [00:10:06][4.1]
[00:10:07] Jackie Bess: No. Well it was a long challenge. In fact, the school district's chief of you know, I'm not sure exactly the name, but like the chief of police come and they wanted to do this contract about. I mean, it was ridiculous for a five year old and I refused to sign it. I crossed like it was made for, like, a high school sex offender. Almost. And it was really bad. So that's how we ended up going to finding the Art of Aurora and getting an advocate. And that was still tricky. So long story short, they told us the only way they would help us is for him to go to another school effective needs classroom and that at the time, you know, they made it sound like he was going to get the help and support he needed. Unfortunately, that wasn't the case. It was a classroom for kids with severe mental health issues. And, um, you know, they were more advanced than him. So going back to your original question, his most challenged school because he was ostracized at his regular school. And then he was sent to another school and put in an effective needs classroom, in which he learned a lot of inappropriate words and appropriate behaviors. I believe the first week that he was ineffective needs one of the students hit the teacher and she fell back and hit her head and got blood. You know, if she was bleeding and she was out for the rest of the school year. And so we fought really, really hard for about a year to get them out of the effective needs classroom. And we switched to school and switched to school. And so it wasn't until he was in the fourth grade that we got him into a school that had an autism program, and he was actually able to have some growth and feel accepted. Mm. [00:12:07][120.5]
[00:12:09] Gwen: I can't even imagine what those years were like. And were you able to work during those years, or did you find that you just didn't have the capacity? [00:12:17][7.6]
[00:12:18] Jackie Bess: So I was working and I worked for a company that, you know, it was all about productivity and it was very difficult. And so during that period of time, I had to take family medical leave and just to be able to manage everything. [00:12:37][19.0]
[00:12:38] Gwen: Right. And that was really your one son or dad you had of the other boys by then? [00:12:44][5.9]
[00:12:45] Jackie Bess: Yeah. So the other boys, when my son was eight years old, Jackson was eight years old and he was in effective needs. At that point, I reached out to the district's exceptional student services, who are over the Sped, and at that time there was the person that was over it. She was helpful and she actually had another IEP to which instead of using the people within the school, she got people from, you know, like the speech therapist from one school. Another person from another school to evaluate him. And at that time, we were so desperate to get our son out of affective needs that we went to Children's Hospital and we got, uh, neuro psych evaluation because he had more than just, what, look like preemie stuff. He had more than just what, like ADHD. Unfortunately, the neuro psych person who evaluated my son was very dismissive of our concerns and just said he has ADHD. You need to get him on medicine. And so months after that, we were not wanting to put him on medicine because we don't believe he needed medicine. We believe that he believed he needed accommodations, however, in order to just get him out of the school, out of this effective needs program, we decided to just get medicine. So we contacted Children's Hospital. He's had a neurologist for since he was born because Jackson has cerebral palsy. Um, and it's not that obvious. So it wasn't anything that, you know, would have helped with the IEP or anything. So our neurologist sent us to developmental pediatrics instead of neuropsychology development of pediatrics. We got in and after observing my son we had this wonderful doctor. And the doctor said, I think he has autism. He didn't want to talk about medicine. He wanted to talk about. This kid needs accommodations. He has autism. [00:15:05][140.1]
[00:15:06] Gwen: What did that feel into you, Jackie? [00:15:07][1.3]
[00:15:09] Jackie Bess: My mind was blown. Like, I don't feel like I had a feeling. It was almost like we were so not expecting that. We had been told for years that he just didn't want to do the work. He just, you know, all the the negative stuff. And, you know, my husband and I are licensed marriage and family therapists, both of us. And so we we help families, we, you know, do strategies with the families that we work with and to have our own son be labeled bad or like we're bad parents was really awful. So to find out and to be validated that this was something beyond our control was amazing. You know, after we processed it and of course, and after we had we had to learn because we we saw Rainman, that movie, you know, in the past. Right, right. And that's what you think of when you think of autism, not what our son has, which I guess would be called high functioning autism. Although I do believe that's a misnomer because. [00:16:12][63.8]
[00:16:13] Gwen: Right. [00:16:13][0.0]
[00:16:14] Jackie Bess: He can talk, he can walk. However, he still has a lot of, uh, deficits. And so, you know, we were just really. Really surprised, and we had to look up just how different autism could be. And and so that's how we found out. [00:16:31][17.6]
[00:16:32] Kristen: Did it take you a while to unlearn the way that you had, what had been modeled to you for how to think about your son, because people had been telling you your son was lazy and bad. And now you have this information. Did you take it in that he was bad and lazy and you had to unlearn that? I mean, I would be I would think it would be really impactful to have people experiencing your child that way for years. [00:16:57][25.2]
[00:16:59] Jackie Bess: So it was difficult because on one hand we knew he wasn't bad. We knew he wasn't lazy. Then on the other hand, you know, this is school. My husband and I have master's degrees. We we believe in school. You know, school is important. And we foreseen our children going on to get masters, maybe PhDs. And so to have failed in school at such a young age, apparently, you know, was a devastation to us. Yeah. And then. As a black couple, it's very important that you raise well-behaved kids, you know, in the black community. Unfortunately, it's looked upon you as parents that you didn't do right. You didn't do it, you know. And then my, um, husband's family, they were very negative. And so it was really hard to process what we thought we knew was what everybody was telling us. And so it was a relief. And, um, you know, just my son, before we knew he had autism, he kept saying, I'm gonna end up in jail. I'm going to go to jail. And he was like I said, this was between the age five and eight, and he's saying he's going to end up in jail. He's bad. And we did tell him, you're not bad. You know, we're just you know, we were trying to figure out what it could be. So I might have. [00:18:32][93.7]
[00:18:33] Gwen: Got a heartbreaking. No that's no. That's heartbreaking to hear. I can't imagine most of us have had a 5 to 8 year old say that he's going to end up in jail, so I can't imagine what that feels like to a mama's heart. [00:18:46][13.7]
[00:18:47] Jackie Bess: Yeah. [00:18:47][0.0]
[00:18:48] Gwen: Especially when you're fighting so hard. Fighting, right? Not trying. You're fighting. Be so hard to get the attention that he needs. And meanwhile, you had another child at that point, right? [00:19:02][14.1]
[00:19:03] Jackie Bess: Yeah. So, uh, Vincent, my now 14 year old, he's, uh, like a year to a year and a half, depending on the time of the year behind Jackson. So, Vincent, as I said, he wasn't diagnosed until I said last year. But it's been a year and a half since we're now technically in 2024. Vincent, we always thought he was our neurotypical son because he is quiet. He doesn't talk much, he can talk, but he just doesn't talk much. And since Jackson has been our squeaky wheel, you know, Vincent flew under the radar. You know, Vincent wasn't a preemie, so he didn't have any significant physical issues like Jackson. And so he wasn't always at the doctor. He didn't have people always looking at him. You know, I assume that Jackson was the kid. You know, they were running up and down the halls with Vincent even more so it was like, well, you know, I'm quiet. I'm, you know, going to make a fuss or anything. And so then we had another son, Gavin. And as Vincent transitioned out of preschool and into kindergarten, at this time, my Jackson was in effective needs at another school. So we had three kids in two schools, and Vincent and my youngest son, Gavin were in one school. And so at the time, Gavin was a freeman. You know, Gavin was a preemie as well, and he was 3 pounds at birth. So he was kind of red flagged. And again, at this time we didn't know Jackson had autism. So when the doctor told us that Jackson has autism, and then I started to get the IEP with all the different people from different schools to have, uh, a neutral view of Jackson, to do a proper IEP and do the Adas. And then when they decided that he does have autism, then I went to the other school where Gavin was, because at this time Vincent wasn't red flagged, but Gavin was he was needing speech because Gavin, he didn't talk early like Jackson did. Gavin was about three years old and he barely talked. And so he was already getting speech therapy at school. So when I told them that Jackson had been diagnosed with autism, then everybody, you know, the speech therapist said, I was wondering about that for Gavin. But now that Jackson's been diagnosed, I'm going to speak up now and say it, you know? So then that's how Gavin became diagnosed with autism. And so then Vincent, he's quiet. He's liked by the teachers. His sensory issues were things that he didn't tell anybody, and they weren't things that he would share. He was just really quiet. And so he flew under the radar. And it wasn't until Covid where we had everybody at home and we had three desks in different parts of our house trying to do online school for our kids. And Vincent was having a hard time, and Vincent was having difficulty with just paying attention and keeping up. And so, you know, I thought, we have learning disabilities and, and our families. And so I thought, well, maybe he has a learning disability. And then he was always quiet and he would go to his room. And unfortunately, part of Jackson's qualities because of autism, he is very adamant about certain things. So I'm the big brother. You bowed down to me, you know. And so Vincent would always just go to his room and leave. So we thought maybe Vincent was depressed. We thought maybe Vincent was having a hard time because of our household with, you know, the struggles with autism. And so we just thought, well, let's just get Vincent evaluated for learning disabilities. Let's see where he's at educationally, because that's something's never been done for Vincent. And so we sent him to a psychologist outside of children so we can get in sooner. And we paid out of pocket because we, you know, wanted to make sure that when Covid was over and he went back to school, he would be in a good position. And so she was like, okay, well, he doesn't have depression. And we're like, what? He's always go to his room like he's in his room. He's quiet. And when we ask them questions, he'll say things like, I don't know which we thought was being like oppositional, you know, like, I don't know. But she said, no, he has autism. And so we were floored by that. But it makes sense. It makes a lot of sense now that we know. So. I have three sons and they're all different on the spectrum. It's crazy. [00:24:10][306.4]
[00:24:11] Kristen: Yeah. It's interesting to have multiple kids with autism that looks so different from each other. I have that experience too. I'm wondering. Now that you have this understanding of them and you understand their difference, their differences and. How do you and your husband help keep your boys safe? How do you how do you teach them to interact in the community? [00:24:36][24.9]
[00:24:38] Jackie Bess: Yeah, that's that's difficult. So, you know, Jackson is, uh, I get angry and I hope, uh, you know, I walk. Yeah. And I cuss and I fuss and everybody stares at me. And so he is hard to, you know, like I said, he he believes in justice and he does not see. Any of his behaviors as contributing to anything. So if he feels wronged, he will let everybody know. And that includes some colorful words. And so that's very tricky for us because he's African American male and he's spewing off at the mouth and, you know, and he's a pacer. So he paces to. And it's been really difficult because people look at us and, you know, especially in this day and age with, you know, just you could be at the mall, you could be somewhere and somebody can go off and it could be a shooting. Or if there's someone who perceives a black person as dangerous or, you know, not to be trusted, those are usually the things that come to mind from, you know, passer bys are people near us first. So in the beginning I would wear a bracelet that said autism. And so when we were at Costco and if he was having a meltdown and we would get the stairs, I would purposely like, you know, touch his shoulder. I tried to stroke him or so, uh, Jackson is okay with touch, and so I would purposely make sure that the word autism awareness was facing out and at the right way position. So if you were looking at us, I'm like, oh my God, that kid is horrible. You would hopefully pick up that. I'm wearing this bright bracelet, you know, that has autism awareness and puzzle pieces. Because of course, that's what a lot of people connect, you know, with autism. So I hope that that helps. So that was one way that I would do things. Next we slap bumper sticker on the car. So when our seemingly normal kids, because they look normal from the outside and I'm not saying they're abnormal, but to the outside person they, you know, look like, well, why are you why why are you having such a hard time? Or why are you holding this kid to the car? Because, Gavin, he would just walk off and into traffic or whatever. So I put bumper stickers on the car. Autism awareness. So we do that. And then as far as talking to our kids about the dangers and things, that's been difficult too, because. You know, as a black family, we have to prepare our kids for what might be out there, but we also have autism in the mix. So how do you, you know, have that conversation when you have kids that are black and white? You know, either the police hate us or they like us. You know, there's no in between. Either white people are good or white people are bad. You know anything. Right. And so I have Caucasian family members and I try to tell them, like, see your auntie, this your cousin, this. They're they're not bad. They're not trying to hurt you. There's some people that are bad and then, you know, but it's hard just for any kid to get those kind of concepts. So unfortunately, it is it is still, uh, a balancing act. I participated in the autism and police social story, and that started to bring more conversation to light with my sons. And then I was able to have my son participate in Children's Hospital of Philadelphia, where they had a virtual trial, uh, study, where they worked with him, where he would wear virtual reality goggles, and he would interact with the police to practice not putting your hands in your pocket, what to do and everything like that. You know, however, it's very unfortunate that I have to teach my autistic kids to be better than bad people. If that makes sense, you know? Yeah. I have to teach them to talk better than somebody who should talk better, like a law enforcement officer. That's been the really hardest part. Especially when we worked on The Social story. It was okay. What can kids do to protect themselves from police who might be racist? And I had a really hard time with that. Like, my kid has a hard time tying the shoe. And I have to teach my. At the time he was 13 or 14. I have to teach my 1314 year old how to behave better than a police officer. You know, I have to teach my kid that's autistic too. Look, the police officer a certain way, or to not go to his sensory needs of maybe putting his hands in his pocket or, you know, um, pacing. Because, like I said, my son's a pacer. And one of the things that I didn't mention was when we sent my son after the effective needs program, we sent him back to the school he was originally in, in the third grade, and they called the police on him again because he got upset. And like I said, he's very verbal as far as cussing and he paces. So they told him he needed to sit and take his time out. Even though we've told them over and over again that he can't sit and take a timeout, he needs to pace. So they called the police on him and the police came and no one told me whether or not they told the police that he had autism, and that that was part of his coping was to pace. So the police officer told him, you need to sit down. And he kept pacing. And so the police officer grabbed him and threw him down, face down, and held his arms behind his back until he was still. And then when I got to the school, they told me my son was sleeping. What it was is my son went catatonic. He wasn't sleeping. And so at this point, my son. [00:31:25][406.5]
[00:31:25] Gwen: He was in third grade. [00:31:26][1.0]
[00:31:27] Jackie Bess: He was in third grade. And at that point he did have an IEP. At that point, they knew he had autism. Unfortunately, the color of his skin dictated more of the response. [00:31:41][14.3]
[00:31:43] Kristen: More of that. Disciplinary action, as opposed to this behaviors related to his disability and then traumatizing him? [00:31:53][10.1]
[00:31:54] Jackie Bess: Yes. So now, as he's a teenager and there's Elijah McClain protest and George Floyd protest and everything is on the news. My son had had a friend who was of, uh, Iraqi descent, but he was Caucasian, you know, and his friend was moving away. And this was in the fifth grade. And my son, you know, had a bad experience, you know, all this time. So, you know, I get a call from the school psychologist telling me that my son is going around, Jackson is going around telling everybody that he punches white people. And so they're like, what's going on? What's, you know, almost like if we are militant in my household, you know, or you know what I mean? [00:32:41][47.0]
[00:32:42] Kristen: Like that you're teaching him to say that, my. [00:32:44][2.3]
[00:32:44] Jackie Bess: God, or something crazy, you know, and at this point in time, we don't have an annual IEP meeting. We have like five meetings a year where, you know, for all the different things. I'm always at the school. I'm always on the call with somebody, um, you know, so at this point I'm like, you guys know us by now, this is not us. And so I had to explain, you know, do you not see what's going on in the world? Why? Why my son, who's already been. [00:33:13][29.0]
[00:33:14] Gwen: Had the police called on him. Yeah. [00:33:16][1.4]
[00:33:16] Jackie Bess: Yeah, yeah, at school twice. And then his, his friend, who is, you know, seemingly Caucasian, is moving away. So maybe he felt insulated by having a Caucasian friend, you know, I don't know, it's like, come on, you know, try to see more of the issues around him and what's going on. And so present day, you know, we have to be very careful because my son, he does get depressed, he does get angry. And he'll say, I want to kill. Um, he'll say, you know, he'll use all the cuss words and. We have to just try to. You know, remind him that, okay, we have to be careful because we're in public. There's things that you could say in your head that you shouldn't say out of your mouth. However, he's it just just the way he functions is what he thinks comes out his mouth. Mhm. Yeah. So I'm sorry I might have got off on your question. [00:34:12][55.7]
[00:34:12] Kristen: No that was great Jackie, I'm wondering with all of the challenging, traumatic experiences that you and your family have had, how that's impacted your health, like how have you tried to take care of yourself or what impact has it had on you? [00:34:28][15.5]
[00:34:29] Jackie Bess: It's been really rough, especially in trying to overcome some of the are a lot of the racial bias. And it's required me to, you know, like study stuff that I mean, you know, when our kids have IEP. Yeah. You read the stuff, you know, you have a general idea about things, but it's required me to have to like, reach into to law stuff and highlight like have a book, a binder, you know, and have tabs and have things and, you know, it's like, I feel like I'm I'm in college again. And so every time there's a meeting, every time I get an email, every time I get a call, it is so stressful. It is like, okay, you know, I go into panic mode because they called the police on him in kindergarten. They called the police on him, and third grade, he's in sixth grade and he's in seventh grade. And the school is calling me, saying that he's yelling and they're not sure what to do, and they're threatening to call the police because he won't, you know, he won't do what they want him to do. And they're still not providing him with accommodations. And so and and this is an autism program at his, his middle school. And unfortunately, they still don't know what autism is or the ways that it could be or how behaviors can manifest when accommodations aren't received. But, you know, my kid's a black kid. And so they just go towards he's being violent, he's being aggressive, he's doing property destruction. He ripped a of poster off the wall. And now they put, you know on his record he's doing property destruction which is possible you know. [00:36:19][110.3]
[00:36:20] Kristen: But all of that all of those things that you just mentioned are behaviors that we see with autism all the time. Right? Yeah. And so that racial bias must be a lens through which they can't interpret his behavior as part of a disability, but they're threatened by it in some way, right? [00:36:36][15.9]
[00:36:36] Jackie Bess: Yes, definitely. Oh my gosh. So, um, you know, just everything that it takes to manage the school side and the provider side and hoping everybody hears me and takes what I'm saying serious about what he needs and what we see at home and, and then to be told that, well, that's just at your home. But we don't we don't see that at school. We see it as he just doesn't want to. And we're back to that. So, um, it's it's been it's been very difficult because, you know, not only the school stuff, but I have my three sons who are different and they get into a lot of arguments and confrontations. And, and then there's, um, you know, I'm constantly playing mental chess if I, if I serve this for dinner, what's going to happen? This kid will like it, but this kid won't. Or I'll have to make several other meals for this kid are the sensory things. I mean, it's just ridiculous that, you know, your. My son was suicidal after the school decided to teach sex education, and I and I agreed to it, but I didn't think that they would put the autistic students in with, uh, neurotypical students and discuss things in a way that didn't clarify for the autistic students who are black and white, you know, so saying things like your penis fills with blood when explaining erections after just explaining how women have menstrual cycles. You know, my son is black and white, so he came home suicidal because he thought that he was going to have like a menstrual cycle when they explained erections because it was right after the menstrual cycle for women, for girls. So what we tried to do is just survive. I mean, like, you know, people tell you like, oh, you got to have time for yourself. You gotta take it easy. You gotta do this, you gotta do that. But it's like when, you know, if you could fit a shower in my life is make sure my phone is not on vibrate. Make sure my phone is in my hand. If I go to the bathroom, the school might call. You know, I might miss a time to. You know, to stop the teacher from calling the police. [00:38:57][141.1]
[00:38:58] Kristen: Right, right. You could miss that window of being able to intervene. Jackie, talk a little bit about I. When I heard your story at a conference that we were both that. I was really just taken aback by the kind of things that you have to think about before you go into a meeting, about conveying to others about who you are so that they'll take you seriously. Can you talk a little bit about that? [00:39:23][25.0]
[00:39:24] Jackie Bess: Yes. So I was really nervous about that conference in which I was on the panel and sharing about my story, because I've had experience in IEPs and in meetings to where, as a black woman with three black sons on the autism spectrum. And like I said, I'm a I'm not working full time. So I have more flexibility to be at these places. And my husband, he is a mental health professional and he works at a clinic, so he can't be at all of these things with me. So a lot of times it's me, and I have to approach things with the thought that a lot of the staff, a lot of the people in these higher positions at the schools, and even some of the work groups that I've been in are Caucasian people who might have the preconceived notion that me as a black woman had kids out of wedlock, that maybe I am not educated, I don't know what I'm doing or my opinions not valid because of whatever their racial biases are. So when I have an IEP or go to a meeting, or like when I was a panelist at the conference, I feel the need to make sure that it's known that I'm married and what my profession is that I have a master's degree, that I am a licensed marriage and family therapist, and I've done a lot of stuff in my career because unfortunately, in IEPs, parents opinions, parents experiences of their children, of their interactions with the school are really put down and dismissed and minimized. And I know that goes on for all colors. You know, everybody when they have kids with special needs, when when the school is not following through, are making accommodations for their kids, but for people of color, it's even harder because we got to fight these notions that like, well, if you would have just done better at home, if you would have just disciplined your kid more, then, you know, maybe we wouldn't be having this issue at school. And that's where a lot of my stress comes from. Part of that too, like I said, I have to be equipped. I have to be prepared. I have to dress nicely. So that way, you know, whereas maybe another mom could like we talk about, you know, do we get time for a shower? Do we get to get our hair done in our, you know, our lives in the autism community? But I have to make sure that I'm doing all that. So I'm perceived in the positive light regardless of my race. And, um, you asked me before about my house. And so in 2018, I had a stroke. I had a bonafide stroke, where am I? I showed some brain damage, and I have a 88 year old dad who's never had a stroke. It's just nobody in my family has had a stroke. I had a stroke at the age of 42. Wow. And so, you know, I have some health issues that could have contributed to it, but but nothing significant. [00:42:41][196.5]
[00:42:42] Gwen: Yeah. [00:42:42][0.0]
[00:42:43] Jackie Bess: Nothing that anybody would have thought I would. I was going to have a stroke. [00:42:46][3.2]
[00:42:47] Kristen: Really. The stress of what you've been experiencing as a family. [00:42:50][3.2]
[00:42:51] Jackie Bess: Yeah. I'd like to explain it this way. In my household, I have three autistic sons. We all speak English, but everybody has a different dialect. And so when Jackson is talking to Gavin, it could be something minor as simple, but it can turn into a fight because they're not understanding each other just because of the way they speak or the way they, you know, interpret things if they're not reading facial expressions properly. If I'm in thought, Jackson might come up to me and say, you hate me, don't you? And I'm like, what are you talking about? Well, your eyes are looking this way. And I have to explain to him, you know, I'm thinking about whatever I was thinking about, but there's a lot of that, and especially between Jackson and Vincent, because Vincent is quiet and he goes to his room a lot, and Jackson thinks that means that Vincent hates him. So, you know, it's it's a lot going on. So I'm spending a lot of my time being the referee, being the interpreter. And then, as you know, if you have one kid that has services, you're constantly, you know, filling out forms to renew this or talking to somebody to repeat the same question that they asked you three months ago, because it's the 90 day whatever evaluation. [00:44:16][85.1]
[00:44:17] Gwen: So you could probably hire somebody full time just to fill out paperwork. [00:44:21][4.3]
[00:44:22] Jackie Bess: Exactly right. [00:44:23][0.6]
[00:44:24] Gwen: You deserve that person. Maybe we should fundraise for Jackie to have, like, a virtual assistant. [00:44:28][4.8]
[00:44:29] Kristen: Yes. A virtual form filler outer. [00:44:31][2.1]
[00:44:32] Gwen: Yeah, right. Well. [00:44:32][0.6]
[00:44:33] Jackie Bess: Well, the crazy thing is that I think we all have these ideas. You know, after my issues with the school district. And that didn't stop my youngest, Gavin. They took away his IEP. He he elopes and they took away his IEP because he's he is smart but he's still behind because he doesn't have that executive functioning mind organizational skills. But they took away his IEP. So when he started the sixth grade he eloped from middle school twice. And I had an IEP for him. I asked to try it again because of course he eloped. He is crying at school. He's having problems. And do you know that they denied his IEP again? And then they told me that they don't believe she eloped. Even though one of the allotments. I found him on the sidewalk and then the second allotment, his GPS showed me that he was across the street from the school, and one of the district persons said, we decided that the GPS was wrong. Now come on, they use G.P.S. and murder cases, right? Yeah. And I can't get the school district to believe or trust this G.P.S. that I pay for. So my eloping autistic son could make sure that he doesn't get hit by a car or drown or kidnaped, and they're going to tell me they decided that the GPS was wrong. So going back to what we talked about, like, you know, all the things that us parents need, I had fantasized about, okay, I'm going to make a nonprofit. So that way we can raise money for families to get a lawyer, because that's when we started to get a little improvement. Now, things didn't completely change, but we had to hire a lawyer to just to get a little improvement. That was like, okay, uh, we're only going to give your kid 15 minutes of online instruction. During Covid to, okay, we'll give your kid 30 minutes. That's what the look. That's all right. So we've had to hire a lawyer. And once you hire a lawyer and you get some kind of benefit, you can't go back. Yes. So we've had to keep hiring a lawyer, because if you have a school district that I'm not here to talk badly about the school district, it is bad. But this. But, uh. If you have a school district that's basically gotten away with stuff like I filed complaints with the Department of Education, and unfortunately, the Department of Education's job is to make sure that they followed the rules, as in, did they hand you that packet of what your rights and responsibilities are? Did they have the meeting within the 60 day timeframe? Did they process the right right. Not whether or not they did your child any justice, right. So anyways, back to what I was saying and what you were saying is it would have been, you know, I've had these fantasies and I talked to some of my other moms who have kids on the spectrum, like, let's make a nonprofit, let's get some funding and help people who need lawyers and let's help people. Let's hire some, like you were saying, uh, secretaries. And it's like you come and you bring you bring what you need help with, or we'll help you stay on track or something. But we are also busy. We are also flooded by our day to day and every time. You make a call for one thing, whether it's the school or there's a meeting. There's like five things that can add it to your list, right? That me and some other special needs moms are always talking about and, you know, wishing, like, okay, if we just won the lottery, you know. [00:48:30][237.0]
[00:48:31] Kristen: Right. [00:48:31][0.0]
[00:48:31] Jackie Bess: Those things. But I feel that we all are struggling with these things. And while there's a lot of information out there, if no one is holding these schools, are these districts or even agencies accountable, then what good is knowing having that knowledge. [00:48:51][20.1]
[00:48:53] Kristen: Right? That's such a good point, Jackie and I, I agree with you. I mean, in Colorado we have the Disability Law Center where sometimes they'll take pro-bono cases. But you have to have the energy, the wherewithal, have everything organized. And when you're dealing with multiple kids with autism, and then you have that racial bias on top of it where we do have the time, the energy, and they don't take every case right. They do the best they can, but they're limited in their resources, too. And the Colorado Department of Education, we're a state with local control built into the Constitution, so they can't mandate anything they can recommend. And like you said, they can make sure they're following Ida rules wise. But districts and buildings have a lot of flexibility in how they interpret that law. And it makes it really, really challenging for families. And I, I can't tell you how much I think we both appreciate having you with us today and sharing your story. It's so impactful. It's so important for people to hear what families of color are experiencing who have children with autism. And we're just really grateful for you spending time with us today. [00:50:06][73.1]
[00:50:07] Gwen: And humbled, Jackie. Incredibly humbled. You're pretty fierce. So you are being added to our Wall of Fame. You. Yeah. Thank you. The You Don't Want a Hug Wall of Fame. Okay. And you did a beautiful job. Thank you so much for being with us. [00:50:23][15.9]
[00:50:23] Jackie Bess: Oh, yeah, I appreciate it. And thank you for letting me share. And it is kind of difficult because you don't want to feel like you're playing the race card, you know? But at the same time it's like, but we have this extra door or wall or barrier to get through, and then you might get through that for one person. But if you have a team of people you know. It could be one person. [00:50:49][25.5]
[00:50:49] Kristen: And for our listeners to be able to witness and experience what you've gone through hopefully builds empathy. And empathy, I think is one of the most powerful tools we have in looking at allyship and how can we support our families of color that are in our community that are having a very different experience from us? So it's really important your vulnerability was gold and we just really appreciate you. Thank you so much, Jackie. [00:51:18][28.6]
[00:51:19] Gwen: Before we let you go, would you please share with our listeners something about each of your boys that you just love and cherish so much? [00:51:26][7.9]
[00:51:28] Jackie Bess: Jackson has a very good sense of humor, and the nice thing is that not 100% of the time, maybe 50% at the time. But if I could figure out something funny. I could help defuze one of his meltdowns and he has a really good memory, which is nice when it comes to our inside jokes. So that's really great that he has that ability so we can do an inside joke. So if there's something happening, I could, you know, lean to that, I could make a funny face or say something funny or silly and it could chip away a bit at whatever's upsetting him. But he has a great personality. Um, and everybody likes him because he could mask really well, that is a good thing, you know. Of course we know it has a double edge thing, but for the most part, he is just a really good person to be around. He's he's he's really sensitive. And he used to ask me if we can pick up the homeless person and let them live in our spare bedroom as well. And so that's the kind of heart he has. And then Vincent, Vincent, he is such a helper. You know, like I said, it's really quiet and he'll talk when he needs to. But if I say I need help with something, he gets up and he's on it and he'll take care of it and he does it. If another brother needs help with something, he'll do it. You know, if he's not angry, but he'll do it. And he's my rock as far as if I'm if I need help. But something he will do it. And then Gavin. Gavin. He's just so cute. He's just, you know, he's like one of the cutest kids. I even took a video of him one time, and he told me that. He believes that God had him be born last because he could make people happy and he could bring happiness to our family. And he thinks he's cute too. And he believes that that that's like it's a special ability. [00:53:39][131.4]
[00:53:40] Gwen: So thank you. I love that it's important to know all the wonderful things about our kids. Mhm. All right. Thank you so much Jackie. [00:53:49][9.5]
[00:53:50] Jackie Bess: Okay. Thanks, Gwen. Thanks, Kristen I appreciate it. Thanks. [00:53:53][2.9]
[00:53:55] Gwen: Thanks for joining us for this episode of You Don't Want a Hug, Right. We sure appreciate it. If you'd subscribe to our show in 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. [00:54:09][14.2]
[00:54:10] Kristen: If you'd like to stay up on all our happenings, resources and bonus material, join our newsletter at YouDontWantaHug.com. [00:54:15][5.2]
[00:54:17] 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.
Комментарии