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Disclaimer: This episodes content contains experiences surrounding abuse and medication.
My next guest on that Denielle and I have been wanting to record this episode that dives a bit deeper into the experiences of neurodivergent parents. I would agree with the no, healing isn't linear.
Talking with Denielle about her lived experiences(where I read more about on "Love what matters")has shown me that being a neurodivergent parent, isn't just about our differences and struggles. I am looking forward to communicating about some of my personal takes and actions that I'd like to explore of that with other parents and a variety of divers expertise and actual studies by the disabled.
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You're listening to the diverse talk podcast. I'm your host, Angie. So far in season one I'm bringing on people who share their advocacy and lived experiences within the neuro diverse community. The hope is to seal and heal the divides that are active in our community. It's all sorts of surface supports, and give space for those who are affected by the divides, and the lack of inclusion. I hope this helps. Today I'm talking with Danielle, who has recently diagnosed autistic ADHD. But we got connected to an article they wrote on love what matters about their experiences as a neurodivergent. parent. We also go on to discuss and question masking the importance of sensory diets in school education systems, and how we're healing through self advocacy. proceeding in one to your article, the day I got diagnosed as autistic was the day I became normal on love what matters? Was it something that you have been wanting to do for a while? Or did you just want to write a piece and just share that piece? Yeah,Denielle:
so I've actually been trying to find my own voice I am, I know that I want to produce content for the autistic community or for myself, I don't know how to approach that is a bit tricky for me to kind of wrap my head around. And I've been actually thinking more along the lines of YouTube. Because these days, I can speak out my thoughts better than I can write them, which that kind of shifts, which is odd. I trying to think for a moment of what I must have posted. But I think it just from my content on Instagram, somebody reached out to me, Sonia was her name from love what matters and asked me if I was interested in writing an article. And I was a little scared, honestly, because again, for some reason, right now, I'm not that great at writing, even though it was something I did very well in the past. But I didn't want to pass up the opportunity. So I talked to my therapist, because he knew that content was something that I really wanted to kind of dive into. And it was a really challenging article. Because, you know, when she emailed me the requirements, she said, let me know about your diagnostic process, your son's diagnostic process, the ADHD and the autism, what was it all about? What was the journal and I'm like, this is a book. And so I actually had to ask for extra time, because I was really struggling with narrowing things down. And I talked to my therapist about it. And he specializes in autism. And I just I'm really lucky because I have a wonderful therapist, and an adult autistics. And so he really helped me narrow down and he's like, you're just gonna have to put you can't do all that. And you're just gonna have to let her know you can't do all of that and pick something and I said, Well, it makes sense to start with my diagnosis long term, what I think our community needs, at least what I need. And I think so many of us need is there are so many tools for neurodivergent. kiddos and for neurotypical parents of neurodivergent, kiddos, and very little for neurodivergent parents of neurodivergent kiddos. And that is like, absolutely, that's where like my passion is in all of that. And so didn't feel comfortable just diving into that with no context. I said, like, I think I just need to start with my diagnostic story. And just keep it to that and mine and rivers because they kind of fold in together, and then just start there. And then that can be a launching place for everything else that comes up.Angie:
I think you're absolutely right about there not being enough tools for neurodivergent parents and adults and everywhere. It's kind of different. But I think what happens is we go through life without understanding that we need access to the support and so much shit has happened up till then it's take a lot of how would I say not just time, but just the amount of energy that you would have to produce? Because there's already been just, you know, live trauma. Right, right. You know, that's kind of something that for me, I've tried to explain to doctors that we can't talk about a diagnosis without talking about before getting one as an adult, there is a lot of suppressing and masking. You spoke about that in your article. It's a relatable thing for neurodivergent parents. And I'm not saying everyone but it seems as if neurodivergent become adults, you know, everything is okay. And especially for those who of us who have masks for so long, that we're okay because we've made it but in reality that was us masking and not knowing it.Denielle:
Yeah. And I think trauma is a marker for many neurodivergent children and adults, but we carry that trauma through right and then I know for me and I think it's probably fairly common is somewhere probably in our teenage to young adulthood. We really start to tailor our lives. in a certain way, you know, and I write about this in the article too, my life looked a certain way. And, and I didn't have friends, I didn't have a social life I worked, I came home, I knit, you know, and and that was fine with me. And I think that one of the reasons many of us are getting diagnosed as adults, once we have children and our children are getting diagnosed, and we're like, Whoa, is because children kind of blow apart our ability to mask in such a way like we no longer have such tight control over our lives, we have to take care of a child. And children have a whole set of needs that are very different from our own. You know, and I was a bit of an older mom, my son was born when I was 35. So I had a very tight grasp around my life and what that looked like, and that just got blown apart. And then, as that started to happen, as I started to recognize my son's sensory needs, and started to unravel that story, it just became so apparent. And then yeah, like you said, the first question I had to say, though, is is this this trauma, and then I had to kind of go back through the timeline of my life and kind of trace my symptoms, and certainly trauma I think exacerbates but also, you know, I was thinking about this this morning, too. And I hope it's okay for me to say but young women who can't find their voice, they don't embody themselves in their voice often get abused. For me, I definitely had periods of selective mutism. But I spoke in a whisper for most of my childhood, right. And, and when we say no, no one listens, right. And that that kind of things, I think it's so intertwined, and we carry so much through. But then going back before that, and understanding that like the struggles and communication, the stimming, all of that, and how, as long as I can remember those things, were there a part of it is just the fact that once we're parents want once we arrive at that place, we no longer have the ability to mask the way we used to and care for our children, though, if they need to be cared for.Angie:
There is a lot of guilt when you're a parent, and you feel like you also don't have any connection to other parents, I would get so frustrated. But I found it difficult to dive into conversations with other parents because I couldn't relate the way that I was parenting and the situations that I was going through while parenting or something to be ashamed of, because I would have meltdowns and shut downs. It didn't seem as if a lot of the times it presented itself as depression, I could tell the difference. And I also my reactions are just so out of balance. My personally, me, I didn't know how to how to deal with that. And that was something that I felt the same both, is that something you could relate to as neurodivergent? parents?Denielle:
Yeah, so that was a huge thing for me. So for me, historically, shutdowns have been what my body does. I am quite sure at this point, and so is most of my family that we come from a line of neurodivergent people. And so like we were taught social skills, not by neurotypicals, but by our neurodivergent, parents and grandparents. And so it was done in a way. But we were taught how to mask essentially. But for me, you know, my sister, I think would have meltdowns. And I would shut down and I was going to the doctor from as early as six years old, missing two weeks of school at a time, I just couldn't keep up. I wrote about this in my article, and I have all my theories. And this is the thing, this is why I think our stories matter, because there isn't research about any of this. And I think we need to start telling our stories and start bringing it out into the open so we can figure things out. But I believe that we have fight flight, freeze, and fawn. And those are kind of nervous system responses, right? For some of us, our nervous system kind of automatically defaults to one of those. And historically, like I was a freezer or a foreigner. And that is what I did in my body shut down. I mean, I had massive health problems my entire childhood with digestion and immune system and fatigue and all of that. And then when I got really, really sick this last time, I think something in my body just flipped because I was really going down. And I think I just my body couldn't do it anymore. And so suddenly, I was losing my shit. And I didn't know what was going on. I mean, it just terrified me. And you know, I was raised in a household that was abusive, yelling or expressing anything like that just terrified me. I immediately started therapy, because I was like, wait, what's going on? This isn't cool. I don't know what's going on. It also started me down the path of what was happening with my son. And so this is guilt. I still feel shame about that. I wish I had known then what I know now because I couldn't have done more for myself. And I think I was just getting to the point of meltdown. I think we absolutely have massive amounts of guilt and shame and that is what I felt the one thing that is never, ever talked about, you know, there's so much around honoring the needs of the child and the sensory needs of the child and I have a very high sensory seeking child. And for so long. I still I mean I always want to honor his needs. However, I have learned if I don't honor my needs as well, a meltdown happens, and then we're both. It's just not it's not good for anybody. Right. And so I think there needs to be more graciousness with parents and also more support of parents who need to set boundaries and how to do that. How do we honor our children and set boundaries because nobody wants to be in a mountain in front of their children. You know, I also spoke about this in the article I alone parent a lot, I don't always have a partner to pass off on. And that's a common story in our society. Like, I know that I'm not the only person families split, a lot of family split. And so when you're the only one, we have to feel okay to set boundaries, and we need more support. Another example is, if it's okay for me to say I was, I love listening to the podcast course it is the research and everything like that. And so it was an ADHD specialist. And they were talking about emotional dysregulation. And I was in my car, like practically in tears, just like, This Is Us. This is my son, this is me. And they were like, the parent needs to be the regulator. And I'm like, What if the parent also has ADHD, you know, if you've got the ADHD, you've got the sensory seeking the emotional dysregulation, the meltdowns and what happens when all of that gets fired up at once in a household? How do what are our tools and and that's the thing is parents neurodivergent parents aren't given the toolbox that neurotypical parents are given. And I just think there's no one size fits all solution, there isn't for any parent, right? But the more we can tell our stories, and the more we can communicate and come up with ideas, or say what works or doesn't work, you know, I think that's what I want to see in this community.Unknown:
Well, it's perfectly fine to share other resources on this platform. I'm all for it circulating that information and supports because sometimes different perspectives difference approach can give you the ideas and tools you may need. So I'm happy to have that on here. You're absolutely right about a one size fit all. But that is something that's ingrained in our society. If you look at the way school systems even started to come about one size fits all was applied to our education system, right grained in our health systems as well. The support for parents needs to extend to neurodivergent parents, because as you're doing therapy with your child, and you're finding supports for your child, you find yourself putting yourself on the back burner. And that is only a formula for trouble because we get to a point where with or without fighting that you have a diagnosis as a neurodivergent adult, whether it be a parent or adult, you go so long without that support, something shifts, something changes. And we've ended up in without supports. And then the children on me, when I was being an partner parent, that term should be coined by the person I heard it from yesterday, which is I have to put that account on the bottom so you guys can check out how it's explained. And that credit to this person. As you go and you start doing therapy with your kids, you realize how you can't keep up like everybody else is keeping up and show up as much as everybody else is showing up. Because if you do encounter sensory avoiding, you know issues, your parent who constantly shuts down either from working out in society, being that solo parent, for me, that's what I was doing by myself working, picking the kid up from school, taking him to multiple therapy, taking, you know, my mind to the doctor, maybe at some point, you start experiencing shutdowns here and missing we're fair. And that is a common experience. I mean, and it's not to say that not neurodivergent, two parents still go through their things. You're right about sharing your experiences, as well as there being research based off of autistic children period across the board, if we start doing that, and we start talking to near divergent parents with lived experiences, or even getting diagnosed, but not having even the support because maybe their parents didn't get the support. It's a vicious circle, and it's just gonna keep circulating. And we're not giving that platform to neurodivergent parents to kind of give, you know, some help to parents that are parenting autistic children. You know, I can imagine a community there is divide. This isn't about neurodivergent parents saying I have it worse, we're trying to have connections that we've never had before. Hey, if any of this is resonating with you, I'm truly glad that you're still here. I just wanted to let you know that I was able to do this swiftly and easy through the anchor app. And what I really like is that they have a desktop version. It usually takes me a bit to learn a new platform but not with anchor. It's been a relief to have a place where diverse talk can be heard on a variety podcast platforms. And considering I'm a newbie, being able to earn money with anchor without needing 1000 plus subscribers is going to really help Help me with putting money back into this production and to help distribute talks for the neurodiverse community. So if you ever had any thoughts to start a podcast, anchor is definitely the way to go download the free anchor app or go to anchor.fm to get started, and I wish you all the luck. Yeah, yeah, absolutely. And just lost and kind of scary. You know, I think what what I was going through is not understanding what was happening. I just felt like I was unraveling. And in a way at the end, it felt it was a good thing. But I didn't understand what was happening. And then you just start internalizing, I'm a bad parent, right? Then from there, it gets lonely. And you don't understand why things are so different. It's interesting, too, because they thought about this as well, I'm trying to think of rivers was six rivers is my son, and he was six when I was diagnosed, and then he was diagnosed at seven. So let's just say for the first five and a half years of his life, we didn't really know what was going on early on, it was fine, I think of how much we do still modify, like, things didn't get hard for him until we had to step out of the house, right, we kind of have an autistic friendly household as the as things got more complicated, and he became more sensory seeking, that's when meltdowns went on. But for him, it you know, it was pretty chill for a while. And I think about that, too, like in a neurotypical household, maybe things become more obvious, or they're in there. And that's the other thing that also such a range of, we're all individuals. And so there's such a range of when support needs arise, and what those look like and all of that, but in our lives, it was fairly well managed until you know, preschool. And that's when things really, really started to blow apart. Because that's when things started to blow apart for him. And then trying to manage that and how the household changed and things like that. And it got challenging, and absolutely this idea that we need to be out, we need to have friends, for our children and do all of the things. And that's when it got too hard for me, because I was good at making acquaintances and getting acquainted and very good at that level of masking that initial phase. But the maintenance was hard. And one thing that I don't like is I find sometimes in a situation, I'm saying what I know, I'm supposed to say, and then I go home feeling like I've completely betrayed myself. And I'm just like, Who am I? And I think that's something that masking does to us is it really we start to lose ourselves. And that's the tragic part. I mean, there are parts of me that I may never get back. I don't even know where they are anymore, you know, but I felt like it was being so untrue to myself sometimes, and and that needed to stop. And then I just became exhausted and burned out. And I just withdrew completely. And I lost a lot of relationships. And in the end, honestly, it's not the worst thing that happened to me, because the few friends that have remained are good friends, and they don't require me to mask as much and so a huge kind of process to come through that and out the other side and say, I'm not going to do this anymore. Or I'm going to try not to I wonder sometimes too, is it possible to never mask again, I just said do it so automatically, right. But I'm going to try to really honor myself more moving forward. For me, the goal is to, you know, start the process of unmasking. And it's not better than masking, it hasn't gone away. Because I found myself doing that recently and automatically. And it looks different. It looks different with different people and scenarios, depending on my sensory. So I don't know if that's something that other people can relate to, I'm sure they can, that doesn't give a good foundation, right for us having connections through and through. While it's not perfect, and there is a lot of work that needs to be done. And a lot of dismantling within the community in the autistic community. That neurodiversity community, I found people, for example, like you and some of my former guests that have come on there in the intersects of the community, be able to at least find that connection find people who will be like, aha, along with me, you know, when they read other lived experiences of autistic adults, and even some parents that are because we are out there. Yeah. What connection do you have in the community? And is that different from the connections you've made thus far? That's an interesting question. Connection is so hard relationships are so hard. You know, I remember saying to somebody about a year ago that I've never had anybody who's just like texts or checks in on me, like not even a parent that's like periodically like even once a week like Hey, how's it going? My dad and I will certainly like if something's gone on, we're going to share with each other but never just that like really open like, Hey, how are you? And I don't think I've ever been anybody's like first friend. You know what I mean? And I've never had that. was a bit of me that was feeling remorseful at the time, then they kind of dug into it a little. And I was like, what I even want that there's so much like that socialization pressure around that it's like, boy, and that's where probably I'm bringing in some of my trauma is like, how much connection do I want? Like, is this something that I'm grieving? Is it something that I even want can both exist? Can I want it or can I grieve it and also kind of not want it. But then I have to say, I've also shifted my philosophy around these things a bit too big. I've had to, because I think in the grief of losing friends, or just moving on and and my life has changed, I've just I've had an interesting life, it's been very full, it has meant a lot of change. And so is that connections or connections, and even if that relationship never lasts, if there was like an awesome, beautiful moment, that was like life changing, or that has stuck in my heart, it's with me, like it's always there. And so I've kind of stopped looking at relationships and friendships in that kind of broader, like, Where are you now? Where are you now kind of away and just been like, oh, remember that moment, you know, remember how awesome that felt to connect and to go deep, I'm a very go deeper go home kind of person like, and yet some people can do that over and over. And some people, you just scare the hell out of them right away. And they never want to talk to you again. And then some people, they can do it a little. That's just that's how we are shaped as humans like and myself included. Sometimes I can't maintain a friendship sometimes, or what's expected of me. Like, again, I carry things in my heart forever. Time is very abstract. But people have expectations in a friendship. And I often fail to meet those expectations. And so that means that my friendships tend to wane, eventually, almost all of them. So I've kind of just started looking at them differently. And they still hold reference for those people. And if recently, actually, I've reconnected with some friends after some length of time, and you pick up some people are capable of that, like, boom, here we are 15 years later, and here we are, you know, and we haven't been here for 15 years. And that's okay, because life was happening. You know, I need that flexibility. And when I don't have it, I found a way to honor it without feeling too down about it. You know, admirable, at least for me, I'd like to be in that place. I often struggle where I'm freaking out constantly, because I don't know. You know how to like maneuver relationships. And, of course, I overthink almost everything that comes my way. And it's definitely a trauma response. But you know, even knowing that, that's what it is, is a big step away from where I used to be, I'm starting to piece together that we're quite sure at this point that my lineage is no divergent. And like so we were raised to understand that we were weird. And I say weird in a wonderful way. And my therapist is always like, Why are you calling yourself weird, it's like, because I love being heard. And now granted, did that cause grief and bullying and everything else. But when I finally started to like who I was, which was in my 20s, somewhere, I'm in stop hating myself. And I don't mind saying that, because I did for so many years, I loathe myself. But in that transformation, I just stopped giving a shit like I was going to be myself because I realized that I was someone special and someone different. And I just didn't care anymore. If you can't connect with me, and I don't want to bother. And if you can, then wonderful, let's see where this goes and like and then I can look to my other conversation of like, if it lasts for a minute, great we can that minute is is a wonderful minute in my memory. And if it lasts for a lifetime, great as well. But I've sort of stopped kind of holding expectations. But once I could own my weirdness and own that I wasn't going to be like everybody else. But that I needed to honor myself the best I could that I stopped kind of giving a shit as much about what other people thought about me, I still mask I mean, there's still so much of that. But in terms of a deeper level of connection, I just stopped caring. And I knew that if anybody was going to connect with me, they had to accept me as I am true that I took stimulants in my 20s at the time, I it felt so good to have my brain, I was actually speaking to someone very recently about this feels so good to have your brain working. And this happened to my friend as well that I was speaking to, you don't want to stop, like you're 2526 years old, you've gone your whole life without your brain working. And so you just kind of like I don't want to stop. So I'm going to take more in the afternoon and more you know, and then like, you stay awake all day and all night. And that's not good for you, right? And so you kind of get into this pattern that's unhealthy, but it's not so much trying to get high or do something stupid. It's just like, you're kind of getting excited that your brain is finally working for the first time ever. But because of that I ended up down a path that isn't the healthiest. And so I gave up stimulants and I was like stimulants are bad, but they're not. And so I'm really trying to find my way back to them and like I'm wondering if I should start them again. But still, I'm like, are they the best thing for There were side effects that I didn't love. And I also think it's hard to like be like, Okay, I'm starting my morning. And then Oh, here we go, my brains working. And then Oh, here we go, it's not gonna work. Oh, here we go my brain, you know, I don't love how stimulants don't have this even lasting effect. So you kind of kind of go up into it and down off of it every single day. And that's a little challenging for me. So I'm still approaching that with caution and trying to think of alternatives for myself exploring and researching as much as I can. It's taboo to say I don't like stimulants, it's taboo to say I do like them. Like, I feel like we need to loosen up a little bit and just be willing to listen and share. We don't always have to be on the same page with especially with if it's hurting somebody like, I totally believe in taking a stance. But if it's sharing experience, we can be more fluid, I believe, around the time that you were taking stimulants and having those experiences Was there any kind of feedback that you can think of, or remember, led you down the path of being it kind of against the simulate? Yeah, you know, it's interesting, because my husband, we weren't married at the time, but we were just meeting he was like, you know, those things are bad, they change you permanently, things like that. And so now that you say it, there was a dialog coming in. And I think it was a little bit of a, it's too good to be true. It was a combination at that point in my life as well. Music has saved my life music is like such a huge system and part of who I am. And so there was a time when I watched movies, I was like really into it all and and right around the same time that I stopped stimulants, it was also this transition of self loathing into self, but truly self love and self acceptance. And he got to a point in my life where I was like, I need everything turned off. Now it doesn't every I'm not reading, I'm not listening to music, I'm not watching movies and not watching TV, I need to start hearing my story and stop hearing everybody else's that was kind of in that same time of just like getting off of everything. And just like totally started with me. And I like that you asked that question, because I had forgotten about the external voices that we're influencing my decision to stop anyway, I guess all that is to say that I am in a position. I'm confident enough, I'm feeling stable enough that I could get more immersed in that community and advocate, maybe I do need to stick around enough to start to change the dialogue and raise awareness that no, this isn't curing anything. No, this isn't a thing that even needs to be cured. So stop looking at that and start looking at the ways that you actually can help you know, and give us more options and do better studying and things like that. Does that make sense? Hell yeah. Let me tell you something real quick. There is a thing, and hope that this like can make sense to someone who's listening, whether you be a medical professional, a parent of an autistic children, a neurodivergent, adult parent, grandmother, neurodivergent grandmothers, because they exist, the sensory aspects of being constantly sick can take a toll on someone, it is full on sensory. So if your child is feeling some type of way, of course, that's going to shift their behavior. And I am a hopeful person, you know, I will cut you dry, dry and short about some shit. You had somebody asking if I would like training and understanding about living a better life a different life based off the foods that I eat, if you are in fact sick from something and it can start from a young age. Cool. Sure. Let's see what we can do about helping these actual symptoms that are symptoms because the child has the condition of some sort or illness. Does that have to do with autism? No, because they're not linked. autistic people sick or not, are still autistic people. We're humans. I'm kind of proud of myself. I don't know if that's the word of just being able to see my child and like say like, there's something going on? What is this? How do I end? This is a sensory thing. Like even if it's not a sensory thing I've experienced, like just recognizing in the way he holds his body and the way he responses in the looks in his eyes, that he is in distress or has a need. Does that make sense? No, it does. Being autistic period, even though you don't have the exact same traits. And same means that you are able to understand when someone isn't honoring someone's boundaries, right, and when there is a need, and that it's presenting itself in a different way because maybe you've done that maybe not that exact same behavior or thing, but that you have reacted or your body has shifted and moved in different ways, because you're seeking some other kind of stimulation period. And I think it's really important to state that But some of the changes that would really help in the education system that I've been thinking about for a long time, I'm sure other parents have thought about this is that being able to see what is going on with their kids can be, you know, recording classrooms to be able to actually see because, you know, we're just hearing what the issues are with this particular thing with our kids. But we're not actually being able to see how our kid is presenting those things. Because the kids present those behaviors in the classroom differently than they make at home. Sensory diets help regulate some of the things that we go through, and then keep reevaluating that sensory diet and and make it flexible, where we can come in, call attention to something within the IEP, but I think that sensory diet should be, you know, in the forefront of these IPS can talk about in these meeting in public school and private and all, you know, types of schooling, you know, even if it doesn't seem entirely scientific to a scientist or a medical professional. These are neurodivergent life experiences. Listen, you know, it's not that we have all the answers, but why? How are you going to do a study based off of just one perspective, that's not how science works? So why is it like that? For the disability community? What does community look like when we're not including everybody? And what does community look like? When it's it's a divide? And parents are against parents? Oh, we should all just get a lot. Nope. Things that we're fighting for, across the board, for you know it to be about human justice? How can that be when we kind of pretend that we're gonna like every single body in the community? No, we're not. We don't have to necessarily, like, know, and get along. I think it's important and essential to see that there is differences, and that there is things that you're not going to be able to relate, because we're all diverse, and everybody has different shit that they go through, that they're experiencing. And that's the importance of intersectionality. And when you talk about the feud and the divide within the autistic community, I think it's kind of silly, because we're all struggling, as curious as it is, as much as a neurotypical parent wants to be heard. That's kind of the same thing with, you know, neuro divergence, except that is going to look different. I have been anticipating this talk. I'm happy that you're here, and that we've had this talk, and I want it to say the person that is coining the term on partnered parenting is Nero queer herot that's on Instagram. And I really have enjoyed getting to know you, and bonding with you. Really? Likewise. Yeah, thank you so much for having me. It's been an absolute pleasure. masking is the most common talked about trauma for many neurodiverse individuals. masking is modeled within society and throughout systems affecting our interactions. Most of us understand that this is systemic oppression. Do you believe in masking as possible? Is there a way to raise our kids become unmasked, and heal? You can leave me an audio message or dm through the diverse talk page answering or giving your opinions on these questions. To read their article in support in yellow, please check the show notes for her links. We are now transcribing this podcast where you enjoy your podcast and I look forward to hearing from you