October 3, 2023
BOB Stories from the Community with Kristin Cooke
Transcript
A long-standing goal at the Blue Orchard Bee is to improve the accessibility of our resources for all of our listeners and readers. This year will are working toward this goal by republishing some of your favorite episodes with new, fully edited transcripts. First published in 2021, this interview by Danielle Merritt-Sunseri with Kristin about her son's journey with autism is now available with a full transcript!
Disclaimer
The following video is a product of the Blue Orchard Bee and the Charlotte Mason Institute to hold a copyright. You are encouraged to share this file with your friends family and colleagues. Do not republish this information in any format, including electronic or digital, without permission from the Charlotte Mason Institute. Ideas suggested in these files do not necessarily reflect the views of the Blue Orchard Bee or the Charlotte Mason Institute. Information provided here is not to be perceived or construed as professional advice in matters of mental health. You are encouraged to work closely with a mental health professional provider that meets your needs.
Intro
Good morning welcome to the Blue Orchard Bee. I have several announcements for you this week. Firstly, Danielle has spent some time on the Blue Orchard Bee webpage to clean it up a bit, to improve navigation and ease of use. Secondly, there has been some interest in teacher training as an online group. Individuals interested should join the Pollinator, which you can do from the Blue Orchard Bee website page on the charlottemasoninstitute.org website. Once you have joined the Pollinator, then message Danielle so she will know of your interest. She will respond to you through the Pollinator. Don't forget about the CMI conference next month. Danielle will be leading the effort for the neuroatypical track. We hope to see you there. For this week Danielle interviews Kristin Cook about her journey with her autistic child. They discuss three major issues. First, Kristin shares how she learned to know and understand autism. Second, she shares how she supports her child’s experiences in school. And third, Kristin shares about her experience where race meets neurodiversity. Let's listen to Danielle and Kristin.
Session
Danielle: I am really excited to get to chat with you today, but I'd actually like to hear about your child first, so would you mind just telling us a little bit about him or her?
Kristin: I have a 10-year-old son and he was diagnosed right before his third birthday. And he is a Roblox-loving, Pokemon-loving, ball of energy that talks to me about those things all day every day. Dragon ball z. Those are his favorite things in the world. And he is super social - everybody is his friend. If he's met you once, he knows you for life and he is quite the entertainer.
Danielle: Tell me a little bit about some of those first observations - I always tell people, in my family all my siblings are autistic and so we never knew. These were just our ‘family traits.’ So, I always think it's interesting to find out ‘what was your story?’ What were kind of those first observations that led you to start asking questions?
Kristin: We had a lot of issues at preschool is where it kind of started and we started to go ‘hmmm.’ I mean, we noticed that he wasn’t chatting as much as maybe some of his peers, but you know sometimes people are like ‘boys are behind girls when it comes to that social piece.’ There was a lot of what I now know is echolalia - repeating a lot of phrases from his favorite shows. That's how he would respond to you. You’d be like, ‘how was your day?’ And he'd be like, ‘bumbling boilers!’ because he was a big Thomas the Train fan.
And we had issues with aggression, which we still kind of struggle with when we can't communicate about what it is that we're trying to kind of get across. And being an adult with ADHD, I kind of was like maybe there's some of that going on - some of that frustration, hyperactivity. I can always remember coming to the Mother's Day Tea at his preschool and all the kids were lined up holding onto the little rope in the class and there was my kid circling them all on the playground - couldn't get with what they were doing and it was so frustrating for the teachers because they would try to get him to go to centers and he just wanted to run back and forth in the room. He was getting all this energy out and I was like maybe he's a little hyperactive. He's kind of like me. But I wasn't sure what was going on.
Our doctors were just like, 'he's just kind of strong-willed’ because he's so social, he makes such great eye contact it couldn't be anything more than that. And it took me really pushing for a full assessment to happen before that diagnosis happened. And then after I had that it was like, okay, some of these other things are making sense - like the echolalia, like the lining up of items, and getting very frustrated. If you ruined his row of toys, it would be like the end of the absolute world. The sleep issues, the gut issues, a lot of things that we read about later were confirmed with that diagnosis when that finally happened.
Danielle: So with that assessment, did that help prepare you for school, do you feel like? Or was it still kind of a process of you just kind of had to figure things out in the classroom as you went and kind of teach the teachers?
If you have a child with autism, but you don't have any adult autistic friends, then you need to expand your circle.
Kristin: It was a lot of figuring things out and teaching the teachers and finding that happy medium of how to interject and tell your kid's teacher what works well for your child and what doesn't because there are a lot of educators that are like, ‘I've taught a million children and I know what I’m - I've had autistic children in my class before, you know, whatever, but really showing them that this is my child and this is how they work and this is what is gonna happen. There were a lot of times where I'd be like ‘I'm gonna give you this warning - you guys do what you do, but if that shoe comes throwing at your face then hey, I told you and then if you want my input you know let me know.’ And they would get like a croc to the head and then be like, ‘you know what, let’s talk about the visuals…’ And so, then we would kind of have that dialogue and then be more proactive. So, that became helpful along the way, but it’s - we've had educators who are very open to working with us and educators who are not.
Danielle: When I heard you speak at the Autism Summit last year, I have to tell you, you just about had me in tears because most of the time when I hear neurotypical people speak - although having ADHD, maybe you're cheating a little bit - when I hear them speak about autism or how to support autistic people, it’s clear to me that they still just don't quite get it. They care deeply, but I still feel unheard and dismissed and that was not the case with you. You really resonated with me right from the moment you started speaking and even though we had never met before I just felt seen and heard and it was clear to me that you've made that leap from caring but not quite understanding to being someone that I, as an autistic person, would trust. So, I'm curious, how did you get there? How did you make that leap? And how would you tell other caregivers that they could get there?
Kristin: First of all, that means a lot to me because it's taken a lot of work to get to that place. I will tell parents out there, I used to have every puzzle piece on, bumper sticker, you know. ‘I'm raising a kid with autism!’ Autism mom super power t-shirt - that was me. I'm not gonna say that I just glided right into this space, but there was a point where I figured out - autistic children grow up. And there's an entire community of people out there that can give me great advice; that can give me hope; that can pull me out of that place of martyrdom that a lot of parent groups made me feel like I needed to be in.
I think it helps that I'm a minority, already so I know what it feels like to be talked over, to have people kind of be passive to things that I say are an issue, and it was really important to me to give the same respect to the autistic community that I want when I'm speaking as a black woman about my experiences in life. Even when I work with autistic minorities - there's a difference in the perspective of how to navigate through this world being a minority and being autistic - it’s like you've got two minority groups that you're placed into, but a lot of that process means that parents have to put on their big girl panties, as I say, and you have to go into autistic spaces and you have to be prepared for people to be blunt with you. I mean, my son has no filter now. He may not have one when he's 30 and what he says may come across in a way that people don't appreciate or where people get their feelings easily hurt. Parents or like their feelings are just so easily hurt in these spaces. They're like, ‘you didn’t have to say it like that,’ ‘I don't understand why you're being so mean.’ It's like, ‘well, you've come into this room and you're asking about ABA for the 15 millionth time and we've said this is abusive and we said from our perspective we don't like it and you're still like, but Bobby looks like he's having so much fun, right? You're not listening.’ And if you’re not in a space or a head space to listen, don't come into autistic spaces triggering people with your questions, you know, and don't expect to get a really nice response when that happens. And I get that people want to learn and they want to figure out things that don't make sense to them, but there are some things that I don't think are ever going to make sense to a neurotypical parent because it's not their perspective. They're going to constantly look at their ABA therapy and be like, ‘well, my kid just looks like they’re having so much fun.’ Okay, all right, but you're not autistic, so your perspective is going to be completely different. And parents will hate me for saying that kind of stuff because they're like, ‘you don't know my story, you don't know my journey.’ Okay, okay, I don’t. But I can see that there's a big big movement in this community talking about how this was detrimental to people and I don't want my child to grow up and be an adult who said, ‘my mom had the information and she didn't listen.’ So, that's kind of where my thought process came from in starting to really try to connect with autistic adults. I always say, ‘if you have a child with autism - and you have 50,000 parents that have autistic kids - but you don't have any adult autistic friends, then you need to expand your circle. I have plenty of autistic adults that I'm friends with that I can ask questions to and get feedback from that I've built trusting relationships with that are genuine relationships that give me hope. You know, when I'm having a really rough time and I'm not understanding something, it’s nice to have those people in my life. They're my friends and they're more than just my token autistic friend - they’re my friends. They're people that are genuinely intertwined in my life and I feel like parents need to make more of an effort to understand that our children will grow up. And what the world will be like for them when they're speaking up about how they're treated or how they want to be treated, when they're trying to advocate for themselves, which should be our goal - to create children that are advocating for themselves as they get older - not just, move out of the way, I'm your mom and I speak for you, but people who genuinely are advocating for themselves - that they feel comfortable doing that.
Danielle: Is your son in a traditional classroom?
Kristin: He is in an emotional behavior support class. He's pushed into gen ed basically all the time. His principal has a very strong support for special ed students and feeling like they shouldn't be segregated, so I love our principal for that reason, but he is a typical fourth grader when it comes to the things that he likes and wants to do. I think usually around second or third grade, kids start to notice that their peers are a little bit different and it becomes a little bit more difficult. We're starting to see that point of some of those pressure points where those people he feels like are his friends maybe aren't so friendly. As a parent, you have to kind of find that line of where to interject and when to step in and explain how friendship should work and how people should treat you, but there's a lot of defensiveness. He's like, 'that is my friend.’ So, as we go into fifth grade next year - I've worked with so many families going into that middle school age where I'm just like ‘oh boy, this is going to take a lot of patience.’
Danielle: Yeah, that's a really hard age for us. So, when I heard you on the Autism Summit, you mentioned - and you mentioned it briefly here just a minute ago - about this kind of intersection where race meets neurodiversity and I feel like that's something that we need to be talking more about and need to be more aware of. So, I'd like to hear your thoughts about that. What is it that society needs to know about this?
We will buy every book that's out there by a parent, by a provider, by anybody under the sun that's written a book about autism, but when it comes to listening to actual autistic people speak, we’re not very good at listening to that.
Kristin: I think that people often hear about things like the preschool-to-prison pipeline being very real. My son had the police called on him in the second grade - I want to say second grade because he threw something at his one-on-one who didn't follow his behavioral intervention plan. And it was kind of one of those things, like I said earlier, if you don’t follow the plan that something's gonna get thrown at you because he's the one still learning to regulate himself and learning those social and emotional skills. But the way that they would write about him, I mean at the time I think he was like seven and it was like, ‘scared for our life’ and you know, all kinds of weird stuff. I had somebody once say that he hit a teacher with a pole and when I came in - when I heard that, I was like, I hear like a big metal pole - and I got there and it was like one of those little flags you could get from the Dollar Tree, you know, like a little wooden dowel and I was like, ‘I need you to rewrite this entire thing because the way you just wrote that will be perceived as something else.’ So, there's a lot of advocacy in clarifying those types of things, but the reality is that black disabled boys make up the largest population of students that typically have disciplinary action against them.
There are a lot of instances - I have a friend who works with Legal Aid of North Carolina and she talks about these teenagers or adults who have disabilities where it's never been addressed in their behavior. I've seen it where I go into a school and a child has 30 or 40 write-ups and nobody has ever assessed them for anything. They just assumed that they're a behavioral issue. And so, the reality is that it's an issue. Schools know it's an issue. They’re trying their best to figure out how to deal with that, but oftentimes, if you are the parent of a minority student with a disability, you really have to stay on top of how your child is spoken about, how your child is written about. You know, when we talk about aggression, I don't let people write blanket statements about my son because they'll write, ‘he's aggressive.’ And I'm like, no. He's aggressive when what happens? What has to trigger that to make that happen? Because it's not like he's just walking around, like ‘I just decided to pick up this chair right now,’ but if there's something that triggers that whether it be a non-preferred activity or maybe a communicative misunderstanding - he wants to be somebody's friend, somebody doesn’t want to play with him - he doesn't know how to regulate that still sometimes. Then we're looking at seeing an escalation happen and what does that look like, what is the intensity of that, what can I do to not make that worse when that’s happening? All of those things have to be captured in how my child is written about where I don't often have to do that for his white peers. I don't often see his white peers with the same disciplinary action. We have a little friend who had very similar aggression throughout early elementary school and he was never suspended. Not one time. We left preschool services with six suspensions our last year and went into the following school years dealing with suspensions over and over and over again. So, it's a very real issue that's out there unfortunately and it's one of those things that parents just really have to stay on top of in the long run because it can lead to really negative consequences the older that our children get.
It's a scary thing. I as a mother don't want somebody thinking that my child is mean and aggressive or harming him because they feel threatened by him. He’s gonna be a big kid someday. His dad is six-seven. He's already the size of a middle-schooler in fourth grade. So, I mean, there are going to be people who perceive him to be mean or angry when he's in those modes and so we have to do a lot of talking about that and that can be really hard to explain because to him that makes no sense. It’s like, why would they ever think that? But it's the reality of conversations that we have to have because there will be people that feel threatened by it.
Danielle: Yeah, I was just gonna ask you about that - about how race is processed differently and it’s interesting to hear you say that that’s your child's reaction because I almost had - well, not almost - I had the same kind of reaction. I was talking to a friend of mine and - just about everything that, you know, that is in our society today and that was what I kept coming back to - it doesn't make sense, it doesn't make sense. And so she said, ‘you're right.’ And it wasn't until she validated that ‘you're right’ that we were able to start talking and it was able to start clicking. It not being logical, I think is a problem.
Black disabled boys make up the largest population of students that typically have disciplinary action against them.
Kristin: Because my son sees people as people and so he's like, ‘I don’t understand why that should be a big deal,’ but I'm like, ‘unfortunately, there are people who will think that you are scary or mean or all these other things when you get upset and angry, especially the bigger that you get.’ That little cuteness thing is kind of shaken off - and I mean my kid was super cute at seven when they chose to call the police on him, so now years later it really is a fear of mine because that's reality.
Danielle: How do you see those kinds of interactions impacting his ability to have relationships with the people around him? Does that seem to impact him?
Kristin: We've been really lucky that we have a strong circle of people around us that kind of just go, ‘that's how we are today. We’re having a tough time today, but that's all right.’ But there was a point where we had people - where it was kind of like, ‘oh, our kids can be friends - oh no, they can't be friends,’ you know. And that's tough. It's tough when kids are a little bit awkward or different and they're already being kind of left out, but it's really tough when it is a matter of that kid is kind of scary or I don't want my kid to hang out with that kid because they get aggressive and do stuff. It's a tough road as a parent because as a parent you understand that you want everybody to be safe, right? That's our biggest concern when it comes to anything with aggression. We want everybody around us to be safe including our child. We want them to be safe toward themselves and safe toward others and you have to take on the perspective of understanding that some people are not going to be comfortable with that. You know, if you come home from school and six times Sally says, ‘oh, you know, Ellis yelled today’ or ‘he threw something at the teacher’ or whatever, the perspective is going to be like, ‘ooh, let's not play with that child’ and, you know, that's the consequence of that. And we talk about that. But it doesn't make it any easier in the long run for how he sees it because he kind of feels like in the end, when he comes down off of that, if he apologizes, that it makes everything okay. And we're at that phase in life where we're learning that apologizing doesn't always fix it. And so it's a difficult road at times.
Parents should be able to listen to them and let go of some of the fear and the grieving and the mourning.
Danielle: Is there anything else that you would like to share with people or that you think people need to know about autism or race or school or anything?
Kristin: I think I just can't say it enough: to tap into autistic spaces. I think that we will buy every book that's out there by a parent, by a provider, by anybody under the sun that's written a book about autism, but when it comes to listening to actual autistic people speak, we’re not very good at listening to that. And there are plenty of autistic pages on Facebook, on Instagram, Twitter feeds, books - there's so much information out there if you look for it. Don't spend your time getting caught up in all of these things - ‘I don’t want my child to be labeled’ - I hate when I hear people say that - ‘I don't want my child to be labeled,’ ‘autism doesn't define them.’
Autism is so cool. I mean, my son knows he's autistic. We've talked about it since he was little. We've had books about it. It's not a dirty word in our house, ‘like autistic, ugh,’ you know. So many people have this negative connotation that they're putting out there and they don’t even realize that they're making autism a negative thing by trying to shy away from it and not talk about it or not tell their child that they have it. You know, everybody has their personal choice of when they're going to explain that to their child, if they’re going to, but I would encourage you to. I know as an adult with ADHD that I felt so incredibly lost growing up. And I felt like I was lazy and I wasn't trying and all of these things. And then to find out later there was a reason for it - it was like, ‘what? You mean all this time that I thought that I just wasn't trying, there was a reason for this? Ugh, okay!’
And so many parents of autistic kids are autistic themselves - are neurodiverse. We're seeing all these ties to stuff, so you know how it feels, a lot of you, not knowing why you did certain things, right? Or why people thought you were being different when you thought that you were just kind of going along with the flow. And there will be moments as parents, especially if you’re neurodiverse parents, where it feels like the blind leading the blind, right? I'm trying to help my child with his executive functioning and I'm trying to work on my own at the same time. It's like, Lord, help us both. We're trying, right? But it's really empowering for them to learn about the things that they can do - that they're great at and I just think that exposing them to other autistic people - it’s the same thing I would tell somebody who maybe was a white family that adopted a black child and I'd be like, ‘immerse them in black culture, so that they know about themselves.’
Really tap into autistic spaces and voices because I truly believe that that is where the learning starts and where you can really start to embrace and know your child for who they truly are.
I approach autism in the same exact way. There is a culture, whether people want to accept it or not. There is an autistic culture that they should be able to be immersed in. They should be able to learn from other autistics in the community. They should be able to hear their voices. They should be able to be inspired by them. And parents should be able to listen to them and let go of some of the fear and the grieving and the mourning and all these things that parents are so attached to. And I know it can be hard at times. I mean, dealing with severe aggression - a lot of people don't deal with that. And that’s a part of our journey. There are parents who are dealing with children who can't communicate with them and, you know, their journey is completely different from mine, but there are adults out there who will gladly say, ‘I didn't talk for 18 years and then I did.’ Or ‘I still only talk through an electronic device, but I know what's going on and I can hear you and I understand you.’ And parents need to hear those things because what they get in those parent groups or only autism parent spaces is a bunch of woe-is-me and woe-is-me does not help your kid. It doesn't help you find the joy in advocating and teaching your child to self-advocate for themselves. And you can really miss out on learning so much from individuals who want nothing more than to help us. The delivery may be sometimes hard to hear, but there are so many people who don’t want our children to go through the same things that they went through as children, who felt misunderstood, that are yelling at the top of their lungs to anybody that will listen, ‘if you're a parent, don't do this thing,’ ‘don’t act like this,’ ‘don't say these things.’ And I just think it's really important, I cannot stress it enough, really tapping into autistic spaces and voices because I truly believe that that is where the learning starts and where you can really start to embrace and know your child for who they truly are.
Danielle: Thank you so much for spending time with me this evening. I know that you've got a lot going on and I'm glad that I finally got a chance to talk with you.
Kristin: I'm glad that I could be here.
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