Neurodiversity and Grief

Imagine realizing in your 50s that the challenges you've been facing your entire life are actually symptoms of ADHD. That's exactly what happened to our guest, Carolyn Jenkins, a veteran special education teacher with more than four decades of experience. Carolyn shines a light on the often-misunderstood concept of neurodiversity, sharing her personal journey and how it intersects with both her professional and personal life. Her story not only highlights the resilience and success that come alongside a diagnosis but also emphasizes the importance of understanding that neurodiversity involves diverse brain functions, not mere behaviors.

We tackle the often-overlooked area of how neurodiverse individuals navigate grief. For women and older men, these conditions can remain hidden, complicating their grieving process. Our conversation covers the crucial role of professional guidance and the support networks that are invaluable in such situations. We recognize the unique ways neurodiverse children, especially those on the autism spectrum, experience grief. Breaking down misconceptions, we stress the importance of clear communication and the balance between routine and flexibility to support them. 

In addition, we discuss the healing power of community resources like Soaring Spirits and Camp Widow that provide spaces for connection and understanding. These initiatives support individuals and families through their grief journeys, offering comfort and a sense of belonging in shared experiences. Join us as we explore these transformative conversations and resources that aim to foster understanding and healing.

Contact:
www.asiliveandgrieve.com
info@asiliveandgrieve.com
Facebook:  As I Live and Grieve
Instagram:  @asiliveandgrieve
YouTube:  asiliveandgrieve
TikTok: @asiliveandgrieve

To Reach Carolyn:
Email:  info@asiliveandgrieve.com

Soaring Spirits International:
Website:  https://soaringspirits.org/
Camp Widow:  https://campwidow.org/

 
Credits: 
Music by Kevin MacLeod 

Copyright 2020, by As I Live and Grieve

The views expressed by guests are their own and their appearance on the program does not imply an endorsement of them or any entity they represent.

Transcript

Speaker 1 0:01

Welcome to as I Live and Grieve, a podcast that tells the truth about how hard this is. We're glad you joined us today. We know how hard it is to lose someone you love and how well-intentioned friends and family try so hard to comfort us. We created this podcast to provide you with comfort, knowledge and support. We are grief advocates, not professionals, not licensed therapists. We are you.

Speaker 2 0:27

Hi everyone, Welcome back again to another episode of as I Live in Grief. As I speak a little more, you will realize that I am getting over a cold Went through the entire family. I was really encouraged and optimistic that it was going to bypass me, but, lo and behold, it got me. So I'm in the end phase of that. I feel fine, just the voice gets a little gravelly and I know there are those that could comment and say that there's probably a very special job out there for me with a gravelly lower voice, but we'll bypass that conversation. So welcome everyone, and as always, we have a great guest you are going to love Carolyn With us today, and Kelly's here too. Hi, Kelly. With us today is Carolyn Jenkins and I'm going to let her introduce herself. Carolyn, thanks for joining us.

Speaker 3 1:17

Thanks for having me. I'm thrilled to be here. So I'm Carolyn and I am a special education teacher. I've got about 40 years of experience with people with autism. 27 of those have been in schools. I have focused primarily on autism throughout my career, but have expanded that in the last several years to include more work on understanding neurodiversity of lots of different kinds. I have my master's degree in developmental disabilities and have worked in all sorts of different settings for kids with disabilities. Outside of that, I'm a widowed mom of two. I have two kids that are young adults now. They were 11 and 13 when their dad was widowed, when their dad died when I was widowed, and I found a place with Soaring Spirits International and have become a regional group leader for them, and also I'm the regional group leader coordinator west for the organization. There is an east counterpart as well. Recently, I have become a camp widow presenter as well, and that's been one of the goals that I set for myself back in 2018. So that was really exciting to get to do.

Speaker 2 2:28

Well, thanks and thanks for taking the time to join us Now. Carolyn and I met actually at the most recent Camp Widow in Toronto, canada, and I went to her workshop on neurodiversity and grief. Now I have to confess that I may be a high IQ individual, graduated with honors and all that jazz, but it wasn't really until I took Carolyn's workshop that I came to learn what neurodiversity really was. I had only, at that point, gleaned from what I read or saw online and knew it had something to do with autism or maybe ADHD, but wasn't sure. So, carolyn, can we start there for others that might not be sure, what is neurodiversity, absolutely, and that's a really big and important question.

Speaker 3 3:16

So neurodiversity just means that somebody has a different way of thinking and of learning and of being in the world than is typical, right? So if you think of the majority of the people in the world, your brains are similarly functioning. Right, so you might learn in similar ways, you might think in similar ways, but people who are neurodiverse think or move through the world or learn in a different way. So that could be, like you mentioned, autism, also ADHD, some other diagnosable conditions that fall under that umbrella would be things like dyslexia or Tourette's syndrome or sensory processing differences, those kinds of things. So, pretty much, neurodiversity just means your brain functions in a way that is different than a typical brain, right?

Speaker 2 4:12

So where you would be considered neurotypical, right, and I am neurodiverse- you know, and I love your clarification of it, because before for me the word neurodiversity had an element of behavioral instances in it. So I like taking the behavior component out of it and making it just. Our brains operate in different ways, we think in different ways, which means of course, we learn differently, we act differently, we respond differently and or we react differently. Yep, now, you yourself, I understand, are neurodiverse.

Speaker 3 4:53

Yep, it's funny because I didn't get diagnosed until I was 51 or 52. I'm 55 now and that is a very common story, especially for women, right? They used to think when I was young that only boys had ADHD and they were all those busy little bodies that moved all over the room and couldn't stop talking. It climbed things and threw things and ran around on the playground and they used to say that they would grow out of that. Well, we know that, first of all, it's not just boys and, second of all, you don't grow out of ADHD and, in fact, for women, adhd itself can present more strongly during certain parts of our lives. It's very hormonally impacted.

Speaker 3 5:35

So I found out I mean, I've always known that I'm kind of a lot in the world. I'm a big personality, I tend to get very involved in things, I tend to get big excited about things or big mad about things or big whatever. But I didn't think I had ADHD because I have a successful career that has spanned decades. I had a very successful marriage that was 20 years together, I have a master's degree, I have successful friendships All of those things that they talk about being difficulties for people with ADHD, and it was only in going through my diagnostic evaluation that I was like oh okay, so I might have a master's degree, but I almost didn't, right? Like I took me seven years to get a bachelor's degree and I ended up with a degree in linguistics which wasn't even on my radar. And I have a master's degree, but only because they created this new option for getting your master's. So you know, when all of that was laid out in front of me, it was like a really big aha moment for me.

Speaker 4 6:41

Right right.

Speaker 2 6:43

So suffice it to say that, besides having the education, the experience, job experience, you also have personal experience in this topic, and that's one of the reasons that I really, as soon as I heard you speak and as soon as I met you, I knew I wanted to have you come on this podcast, because I am curious, as I am with many, many topics, how neurodiversity can impact grief, because if we think in different ways, how do people that think differently process grief?

Speaker 3 7:19

Right, and so this came up for me because when my husband died, you know, I ended up with that grief brain, right Widow brain, which I can talk a little bit about, but also I lost that.

Speaker 3 7:32

What I've now learned is external scaffolding, having that outside help to keep me on track, to keep me moving forward, keep me doing the things that had to get done, and I happened to have been going through menopause during that time, right, and so what we know about ADHD is that the hormonal shifts can make it more impactful and more difficult. So I was kind of hit with this double whammy at that point in my life where it was unavoidable to notice the differences in myself and in how I was functioning. So, yeah, so that's when I started looking into, kind of the correlation between grief and neurodiversity. Was after I found out my diagnosis. And unfortunately they really are just layered upon each other, right? So the impacts of grief brain, widow brain, trauma brain look very similar to the impact of neurodiversity of various kinds, right, and so, really, not only did I go into the experience of grieving, with that added backpack of struggles, but then it just got twice as heavy because it kind of layered upon itself.

Speaker 2 8:39

Right. So if the person grieving is also neurodiverse, has one of those diagnoses, then it can impact not only their emotions, what they're going to feel about the loss, but it can also impact the bank you know, to either close out those accounts, et cetera, et cetera, contacting the attorney, whatever look you know, filing for certificates of death and everything like that.

Speaker 3 9:15

It can have a major impact for that person Absolutely, and that impact goes on and on, right. So, because even after all of those initial tasks were taken care of and I was very blessed to have an amazing community around me and they really helped with all of those things, right but I still had to make sure that the bills got paid on time, even after all of that, right, and I still had to make sure that there were clean dishes in the house, and I still had to make sure. And, frankly, I did a terrible job of that for several years and I'm still not great at it, but at least I understand what's going on. But the kids and I, I think, didn't cook at home. I mean, not never, but rarely did we even cook at home probably two years because the whole process of thinking about a meal plan, going to the grocery store, getting all of those things and then having the wherewithal to create those meals at home was just out of reach for me for a while.

Speaker 2 10:15

Right, right. So being neurodiverse makes it especially important to learn how to adapt and adjust Exactly.

Speaker 4 10:22

Yep.

Speaker 2 10:23

Yep, because you can't just throw your hand out. Right, I have to feed my children, yeah, I mean. So you have to. You have to learn to recognize what the priorities are, and then, if you know what your diagnosis is, maybe you can think through it a little better. But if you don't know what's going on, you're just going to blame grief, right? And yourself.

Supporting Neurodiverse Individuals With Grief

Speaker 3 10:43

That's what I found, right. So it's this grief brain, we know about that, and so when I couldn't remember to pay the bills, I put some of them on auto pay and just thought, whatever, I can't, I can't do that right now and that will hurt. But I expected it to get better over time and it kind of did, but really it didn't, because all of my external supports were just gone so, and I didn't recognize that at the time. So, yeah, it's really important to know what's going on and whether you have a name for it or a diagnosis for it or not. I think that there's, like I said again with especially with women, but even older men, right, we thought that it went away and so we know that it doesn't, and so there are a lot of people who are undiagnosed, but pretty sure, right. And so if you're one of those people, I would suggest go ahead and give yourself the benefit of the doubt and assume and give yourself the benefit of those supports you know, sure it could help you.

Speaker 2 11:41

So if in just in general terms could help you. So if in just in general terms. And oh, let me clarify one more thing these diagnoses are physical diagnoses, not mental health diagnoses.

Speaker 3 11:52

They're based on the Diagnostic and Statistical Manual actually, so I would imagine that the DSM. I think we're on the fifth iteration of that now. So they're based on the DSM. So I don't actually know that answer. I believe that they would be mental health. I think they're more likely. That was an easy one. However, I do know that, like getting a diagnosis of dyslexia, for example, typically families might need to see like a developmental pediatrician. So I don't really know that answer, to be honest.

Speaker 2 12:24

Well, that may be a second podcast or a fourth, because we have a lot of topics, and the reason I ask is because it can impact who you might seek out for professional health. Yes, however, yes, yes, however, having posed that question now and having it hang out there, I do know if it was a physical diagnosis, it would be in the ICD-10. Okay, okay, which is what medical coders use for insurance claims. I'd still be willing to bet that there is a diagnosis in the ICD-10 for ADHD. In fact, I know there is from the notes I type and I see Kelly's nodding her head as well. She also does medical transcription.

Speaker 2 13:07

I know there are ICD-10 codes for anxiety, depression, bipolar, and those are mental health disorders, so let's clarify that another time. But I pose it only to interject that these diagnoses can be confusing for everyone and if someone is not diagnosed, all they're going to know is that their world is chaos, for whatever reason, and that they're having trouble coping and adjusting and getting things done. If they don't have the support network that you did, what might occur? And or if someone knows someone that's really struggling like that, how can that person help?

Speaker 3 13:46

Yeah, so I think that maybe those are two questions, because I think, first of all, I would say that anybody who has questions about what's going on for themselves or why they still can't go grocery shopping, or if it's normal to still be getting takeout, then go to your doctor and ask them about that, right, because that's why we have our hopefully and I recognize that that's even a privilege for some people, right? So if you have the opportunity to get to a doctor, that's a great place to start. That's where I started with my ADHD question. Okay, well, I guess we started online with an online quiz of my daughter. That was one of the most hilarious evenings that I can remember, but then I went to my doctor and then he sent me to a PhD psychologist who did my evaluation.

Speaker 2 14:34

Well, kudos to your doctor. Yeah, because I know some doctors that avoid the topic of diagnoses like ADNC.

Speaker 3 14:41

Right, and I think because a lot of especially general practice doctors, there's no way that they can be experts in everything, right, and so I think sometimes people are afraid of overstepping, stepping out of their lane, making a judgment call, and either they just avoid it or they just say no because you're not bouncing off the walls, like I remember my doctor was surprised when I asked, and he's like they've known me for 30 years and it never came up in our conversation and part of that was because I had at the time my mom of young kids, armor on Right. So I went in fully prepared with my questions and I wrote things down and I remember stuff and we followed up and we were always at our appointments on time because that was my scaffolding at the time. Also, I didn't know some of the things that I was doing aren't normal, right, like not. That's a terrible word. Normal is really just a setting on the dryer, but thank you. So, like who knew that not everybody has a fork that they prefer for certain things and a different fork for different textures, right, I didn't know, not already had that or that, like when I was little. I remember being three, four, and we would go to church and my parents would put my little patent leather shoes on and I would throw myself to the ground and tantrum because I could feel the seam of the sock on my toe right, like is not everybody bothered by that? I don't know how you move through the world without that making you crazy. So it never occurred to me to say anything like that because I'm like, well, of course people hate that feeling, right? Or you know, I was always the kid with excessive talking. Or you know all the things on the report cards, but girls didn't get ADHD, so it just was never even a conversation. So you don't even know to say stuff to your doctor, right? Until you know, yeah, exactly, and so so I would say that going to your doctor is a really, a really good idea. Or if you've got a therapist or can find a therapist, that's another excellent space for at least examining that option or that possibility. Some therapists would be able to diagnose, some would not, depending on their credential right.

Speaker 3 16:50

But as far as being somebody who is watching their friend go through this, the way to help really honestly is minutiae if I can just like pick a word for that right, good minutiae. I have a friend who would call me when he would go grocery shopping and say I'm going grocery shopping, would you like to meet me there? And I'm like, oh God, yes, please. I haven't been grocery shopping in you know two weeks. Yes, I'll come, because I wouldn't have gotten myself there without him saying that. So that's a scratch, and that's such a simple thing to do. He's not even going out of his way. Right, he was going to go out of his way, but that's that.

Speaker 3 17:25

You know that external scaffolding or the body doubling that we can talk about if you want, if you want. But body doubling is a way that lots of us get stuff done because somebody else is doing it with us or next to us, or we don't feel like we're missing out on something better while we're doing this. Right, because I'm hanging out with a friend and, coincidentally, getting my shopping done right. So things like that, things like hey, I remember you had to go see this is a true story. I remember you have to go see your insurance guy. How about we meet at the park across the street and I'll stay with your kids while you go to the appointment? Let's meet there at 145. I was like, oh, I have an appointment at two today, apparently. Okay, thank you, right. So those little.

Speaker 2 18:06

What a nice gentle. Not intrusive way to help someone yeah, not by asking that question what do you need? What can I do for you? Because almost every person in grief is going to say oh, I'm fine, thanks, I'm fine, I don't need any help. Or they don't even know what to ask for right, right, right, but the little suggestions, the little stories you just said are such simple ways to help someone without it seeming like you're helping them Exactly.

Speaker 3 18:33

Yep, absolutely Perfect. Yeah, I was really grateful for those things, really great. I still am really grateful for those things.

Speaker 2 18:39

Yeah, nice, nice, nice. So now let's hone it down a bit. We've talked about people in general, mostly adults. At this point let's talk about kids. If you are the parent of a neurodiverse child, maybe a diagnosis of autism or ADHD and I know that we can't speak to a lot of specifics because every diagnosis is different but what might we, as parents, expect to see in our children who are grieving?

Speaker 3 19:11

And if you want, to set a scenario and go that way. That's fine. So I love this question because this is really one of my passions. Right is kids, especially kids who are neurodiverse, and now, of course, we've layered grief on top of that. So that's going to, like you said, depend on everything on the kiddo right and also, somewhat, it will depend on the diagnosis or the suspicion of diagnosis.

Grieving Neurodiverse Children

Speaker 3 19:32

Recently I participated in a presentation at Camp Widow about children and grief, and while there are very typical things that kids go through in grief, one of my favorite ideas that I learned from my co-presenter was the idea of puddle jumping. Right, they jump into the puddle of grief and then they jump right back out. They might not hang out there, they just kind of splash in when they're ready and splash back out, which I think adults aren't as good at doing. Right, it's harder for us to separate so kids. We tend to fall down in the bright and just there for a minute. You know, complaining that our pants are wet. I guess that you know. Kids can kind of puddle jump, which is a nice thing for them. I remember when Gary died, the clergy person that was at the hospital. I didn't know her, but the most valuable piece of information I got was that kids in their early teens are going to get more support from their friends than from me, right? So things like that that are pretty typical for all grieving kids, right? Add to that a neurodiversity and there are a few different things that can happen. The most impactful that I've seen in my own experience as a teacher and as a friend and as a grieving person, you know around other grieving people is unexpected demonstrations, or lack thereof, of a kid's grief, right? So I had a student years and years ago, long before my husband died, whose dad died, and he and his sister were about the same age as my kids were when their dad died too. But I remember he had been diagnosed with autism and his mom would call me very concerned on a regular basis, wondering if he was feeling his feelings, because it didn't look like he was. Well, this student.

Speaker 3 21:09

Sometimes for people who have autism, recognizing, talking about. Sometimes for people who have autism, recognizing, talking about displaying emotion can either be difficult or can just look very different from a typical manifestation, right? So where some kids might look sad or emote, visually, right, or auditorily, right, people can see their emotions. For some people on the autism spectrum that doesn't show up that same way, it does not mean that they're not having the feelings or that they don't understand the feelings. While for some kids that might be difficult, a lot of people who have autism know their feelings and know their emotions, but it just looks different on the outside, right.

Speaker 3 21:48

So reminding people, the adults in these kids' lives, that it might look different to them than they expect can be really helpful, because then you're not worried that they're not feeling it, right. So when we were at Camp Widow this last time, a parent came up to us after the presentation with exactly that concern and you know it felt hopefully it felt comforting to her to hear from us that they are absolutely dealing with their feelings, because you don't really have a choice dealing with their feelings, because you don't really have a choice. Your feelings are there, right, but that it may look really different and or may come out in unexpected ways, where I know that my son got very into this one game that he would play with this certain group of friends and that that was where he would go had nothing to do with grief on the surface, but that was absolutely where he got to set down the hard feelings that he carried all day Right. So people are finding ways and my son, by the way, is undiagnosed but pretty sure so, just so I do fear to kiddo who's neurodiverse. But you know it looks different in for different kids and some of that is is impacted by their diagnosis.

Speaker 3 22:57

Another thing that can be tricky for our neurodiverse kids is language. So when we talk to kids about grieving we have to be age appropriate with our language, right. So a five-year-old is not going to understand death in the same way that a 12-year-old will, or that a 20-year-old will, and it changes over time, and so for that same child they have to kind of regrieve at these different developmental stages. So we have to think about the language that we use with them. But also for kids who are neurodiverse, going back to autism, sometimes literal language, sometimes autistic kids will be very literal with language. So if you say somebody kicked the bucket, right, just as a real obvious example, they might think they kicked a bucket.

Speaker 1 23:40

Literally.

Speaker 3 23:41

Yeah. Or when we say we lost, they lost their father.

Speaker 2 23:45

They think they're lost, can we?

Speaker 3 23:47

find them Right. Where did that go? I worked with a young lady in a group home and one of the women from our group home that worked there moved to Idaho and we never saw her again. And then fast forward a few years and another woman that worked there ended up dying. And we were trying to explain it to the same young lady in the group home and at one point she stopped and she's like is she in Idaho? And so for her the idea of gone for everybody went to pain.

Navigating Neurodiversity and Coping

Speaker 3 24:12

So we have to be really mindful about how we talk about death and along that line we also have to be careful to not create overgeneralization of information. So if somebody got sick and died, we have to be really clear that for our literal thinkers or our literal language learners, they know that it's not every time you get sick you're going to die, right? So just keeping in mind those sort of secret things that a child might misunderstand and making sure that you're really clear with that. Another thing that can be helpful for our neurodiverse kiddos is consistency mixed with flexibility, and I know that that sounds really opposite from each other, but being consistent gives them that anchor to hold on to. Right. Not everything has changed, not everything has gone away. I still know that I get pancakes on Tuesday or whatever anchor that they've got, but then also recognizing that we all need some flexibility when we're grieving right, and so leaving room for some flexibility within a predictable structure.

Speaker 2 25:19

So, and that flexibility is going to be different depending on kids right, but like so with your pancakes analogy it could be we're still having pancakes today, but today they're blueberry pancakes, or you really want, they're chocolate chip pans, eggs, yeah.

Speaker 3 25:32

Yeah. Or today you want eggs with your pancakes Excellent, I eggs, yeah, yeah. Or today you want eggs with your pancakes? Excellent, I'll make some. Right, yeah, okay, yeah.

Speaker 2 25:39

Yeah, sorry. No, it's okay, that's okay, not a problem. Yeah, you know, and that's, and that's one reason I just love talking with you, because you take these questions that I have in my head and you not only explain them, clarify them, but you do it in such a way that makes it so easy to understand that I just in my head and you not only explain them, clarify them, but you do it in such a way that makes it so easy to understand that I just want to smack my flower and I see Kelly's nodding her head and now laughing, because this is, after all, her mother. Kelly, do you have any questions or comments for Carolyn?

Speaker 4 26:09

I feel like I have a hundred thousand questions.

Speaker 2 26:11

All right.

Speaker 3 26:12

Well, we got time for some, but I can't write them down for later too, if we don't get to all of them.

Speaker 4 26:17

Yes, I can't make them come out of my mouth, but my brain is just going everywhere all at the same time. But I feel like I could fit into this category in some ways. You know what's funny?

Speaker 3 26:28

When I started looking into this, I started realizing, okay, I can't have ADHD, because if I have ADHD, everybody around me has ADHD. Guess what they do? Fine, drop pause, or we're all magnificence in this. So, like I really, I mean, as long as we have a couple of neurotypical friends to help us with our bills, but absolutely Well, that's why I did honorfully no, but we do.

Speaker 3 26:52

We find our bossy of people that I think part of it is that we then understand them, but also we are understood, because I think that one of the things that happens for people who are neurodiverse in any way is that you feel othered. You know, I have a million friends I've got like in high school I had like five friend groups, but I was always just sort of peripherally part of all of them. I wasn't ever like a core member, right, and his response was, oh, that's probably good, so nobody got sick of you. I was like, wow, okay, and this doctor has a degree, so I was probably good, okay, it's. You know it's funny because I think we do find the people that understand us and that we understand, right, and so you do end up surrounded by people who are you know Absolutely, but do you have to have a diagnosis to be neurodiverse?

Speaker 3 27:51

No, the diagnosis is. It's kind of like saying do you have to have a diagnosis to have a diagnosis to be neurodiverse? No, the diagnosis is. It's kind of like saying do you have to have a diagnosis to have a broken bone?

Speaker 2 27:57

Or do you have to have a name to be a human?

Speaker 3 27:59

Right, I mean you know so, like if I have a broken bone and nobody looks at it, it's still broken, whether or not it's diagnosed. Now, having said that, I have learned so much about myself by getting that diagnosis, because where there has been shame and I might get a little teary where there has been shame and feelings of inadequacy and not being enough or being too much or being bad at things that everybody else seems to be able to do, that's hard to carry Right. And as soon as somebody says you are neurodiverse, this is hard for you and you can feel like, oh, it's not a personality flaw, right, sorry about that. Your dog has something she says really strongly. He probably has ADHD too. He has a little hyper-focused on, especially if there's a family walking by.

Speaker 2 28:49

Yeah, that's it, that's it.

Speaker 4 28:51

I can't hear my baby's face.

Speaker 2 28:52

Oh, stop it. She'll probably send you a few if you'd like some baby cakes, how many, how many you want. Okay, so time is slipping by really fast and that's one reason I said to Carolyn when we were first talking at Camp Widow and she agreed and actually seemed enthusiastic to be a guest on our podcast I said we've got to do more than one episode and we have several concepts planned already. But I think we really got to do more than one episode and we have several concepts planned already. But I think we really have to do another one on neurodiversity. But I want to step out for just a second and make a very broad generalization, which I'm then I'm going to say Carolyn, can you comment or confirm this and that generalization at least this one, who knows there could be others?

Speaker 2 29:37

Everybody knows me so well. This one is that in life, every single person has to cope. What I have heard today especially is that people that fall in that umbrella or under an umbrella of neurodiversity, they too have to cope. They just have to learn to cope differently. We all struggle with coping. We just have to learn how our own brains think. And in that generalization it kind of removes the difference of neurodiversity.

Speaker 3 30:08

I mean, I think that when you think of it that way, it sort of makes it feel like a more level playing field, right, because we do all need to cope, and I think, more than anything in this world right now, if we can all remember that every single person that you meet right is fighting some sort of battle that you know nothing about, and if we can all hold that, that would make our world a better place. Now, having said that, I will say that the danger of that is that we don't give enough credit to the difficulties that are faced by some people who are neurodiverse. Right, and in doing so, I I just saw a meme recently that was super powerful to me and I I don't remember exactly how it goes, but it was like somebody who was diagnosed with autism said something like as soon as you've shown the neurotypical people that you can suffer in silence, they expect you to forever, and I thought it's true, right. So I think that we do a lot of those of us who are neurodiverse. We do a lot of masking, hiding the difficulties, you know, excusing things away or just not showing that I didn't let my cure my partner into my house for the first, like I don't know three months that we knew each other, because, oh, I mean, my house is just not.

Speaker 3 31:25

I'm not a great housekeeper. Oh, so I must be neurodiverse. It's the funnest way. No, but it's like, you know. And then, even if it's not like, it's certainly my house is certainly not as like. It's not disgusting, but it's certainly messy. And I have so much shame around that that even when it's not all the way messy, I am afraid to let anybody in my space. Right To be judged or to be because we place value. We look at things like tidiness or on-timeness or all of those neurotypical kind of characteristics. We write those as a value. Right that there is no value. She posited that idea and it kind of blew my mind, because we get to let go of shame when it's not a value judgment, right, like it's just like I do other things really well, right, doing my dishes consistently is not one of them, but it doesn't mean we're a bad person.

Speaker 2 32:31

Exactly, exactly, well said. So many of the words you've spoken today. They've been so eloquent and so helpful to just me personally, and I know that out of all the listeners out there around the world, that this is going to help many, many people. It's going to first clarify for them what neurodiversity is and then it's also going to help them better understand how they might recognize it in the world around them. Whether they are privy to the fact that there's a diagnosis or not. They might just be more willing to accept the fact that not everyone thinks, copes, adapts or behaves in the same way, and there may be a very good reason for the way the person you're looking at, maybe across the street from you or at the mall. There may be a very good reason for the way they are responding, reacting or behaving. So we all need to just be open-minded. I use open-mindedness all the time. It does Open mind and open heart. So our time is winding down, but Kelly's got a question.

Speaker 4 33:41

Sorry, I was just going to say that I feel like it will take some of the pressure off people as well. Absolutely, and they will feel so much shame, like you mentioned, which is so prevalent and so denied across the board. Absolutely, you pretend like you don't have shame, but let's face it everybody does somewhere.

Speaker 3 33:59

And shame thrives in the shadows, right, and so as soon as we can pull things out of the shadows and I think if we tie this back to grief again in another way, it's we already feel like outsiders, as grievers, right. So I'm the only one of my friends that I knew until I was widowed, that I that was widowed, and I was widowed in my forties, which is a fairly young age, although it's pretty close to average age actually. But um, but you know, I feel like when you are grieving.

Speaker 3 34:31

You already feel other and you already have these difficulties that come with trauma, brain, right, your difficulties with executive function, any sensory things. You know, grief is physical, it is emotional and it is mental right, it is all of those things. And so if you are already struggling with some of those things and they're superpowers, of course, right, but they're not all superpowers Some of it is a really a big struggle, right. But when you already come to the table with that and then you pile grief on top, it's really easy to feel like you're failing, right, and it's terrifying. It's terrifying Absolutely. I didn't know how I was going to parent my kids by myself.

Speaker 2 35:13

Yeah, and I just thought of the title for your book, shame in the Shadows.

Speaker 4 35:17

I'm writing that down.

Speaker 2 35:18

You're better.

Speaker 3 35:19

Okay, I also have a name, call it Heaven is in Idaho. Based on that history, it's different.

Speaker 2 35:25

That could just be an analogy of stories, examples. But yeah, shame in the Shadows. I like that. That had to ring to it. Thanks, kelly. So at the end of the podcast I usually give our guests a chance to speak freely to the listeners without me interrupting with comments, my own stories or questions. So I offer that to you, carolyn, to speak directly to our listeners. The floor is yours.

Exploring Soaring Spirits and Camp Widow

Speaker 3 35:46

Excellent, Thank you. I guess I would take this opportunity to let people know about Soaring Spirits International and Soaring Spirits Canada. So, as I mentioned before and as you mentioned before, we met at Camp Widow in Toronto. That was put on by Soaring Spirits Canada and there are Camp Widows that happen in the United States as well with Soaring Spirits International. You can find more information about Camp Widow at wwwcampwidoworg. There are going to be four.

Speaker 3 36:18

Five US one-day camps this year. We have in March will be, I think that's in January. In March we'll have a one-day in Houston. In April we'll be in Seattle for one day. At some point there's one in in Chicago and then later on in the year there will be one in Washington DC. Now two of those are also going to have a day that supports kids right, because we know that even though we're the widowed people, our kids, they just don't have a name for that right, they also lost, and so two of the camp widows this year Houston and one other that I need to look up. But we'll have Camp for Kids. So if you've got children and are interested in looking into that, I would suggest going to campwidoworg. It's an amazing organization. These camp widows are profoundly life-changing and you can find people that understand what you're going through. Right, your posse.

Speaker 2 37:18

Your posse, and that's. I echo those words and your sentiments truly and completely. When I went to Camp Widow earlier this month actually it was just what a few months ago, in fact, and it seems like forever ago I went to the one in Toronto, canada. It was my very first no-transcript I did. It was absolutely incredible. The people are amazing, the staff that put this on and everyone associated with Camp Widow and with Soaring Spirits. They are truly amazing people.

Speaker 3 38:10

And I'll say that that was my ninth camp, and my husband has been gone for Gary has been gone for eight and a half years and even still at my ninth camp, I still got something out of it that I'd never gotten before.

Speaker 2 38:23

Absolutely. I can believe that completely and I think let's put this out there, carolyn, and you can pass it on to people in Soaring Spirits that maybe at the kids' camps they can have the older kids try to come up with a new word for their identity. And now recently there was a group of and I have the name of the gentleman who started it, if you want to show it as an example he hosts a group for people who have lost children, whose children have died, and they have coined the term peregrine for themselves and they are putting it out there over the airwaves, over the podcasts and everything to try to get it an accepted name for a parent who has lost a child through death.

Speaker 3 39:10

Yeah, no, I think it's important because words are important, right so, but that might be a great exercise. Well, and my I know you and I spoke about my daughter and her experience with grief. That's one of the things that was the hardest for her. There was a lot of anger around not feeling C, because there's not a word for it.

Speaker 2 39:27

Right. And then I also have another story that I won't interject now, but they've been guests on the podcast. They invented a word the word is orbisculate and they had this huge wish list and one of it was to get the word on national TV. And at one point they did. They got it on a TV show. And orbisculate is just that thing that happens when you're squeezing a lemon or a grapefruit, digging a spoon or a fork in it and you get squirted in the eye that citrus. That was isolation. So it is possible to create a new word. So I would love to see them adopt that and find a word to identify themselves as children whose parents have that.

Speaker 2 40:11

So, at any rate, I have droned on and on and on, carol, and I have loved listening to you and I can't wait until we do this again. We'll just have to go through our many ideas for sessions and decide which one we're going to do next, but we will definitely do that To our listeners out there. I hope you have gained some insight from today, gained better understanding, some clarity, if you will, and maybe your minds and hearts have opened just a little bit more. So keep that in mind. I will post with the podcast notes. We will actually post the website for Soaring Spirits and for Camp Widow and you can connect there, get more information. If you wish to reach out to Carolyn, I'm going to ask you to email me personally and I will put you in touch with her, okay. So, having said all that, again, carolyn, thank you.

Speaker 4 41:00

It's been a pleasure.

Speaker 2 41:01

Thank you, kelly. Oh, I'm so glad it's been our honor and privilege for sure. Thank you, kelly, and we will talk to everyone next time. Remember to take care of yourselves. Everybody Love you all. Bye-bye, as we all continue to live and grieve.

Speaker 1 41:18

Thank you so much for listening with us today. Do you have a topic that you'd like us to cover or do you have a question from one of our episodes? Please email us at info at asiliveandgrievecom and let us know. We hope you will find a moment to leave a review, send an email and share with others. Join us next time as we continue to live and grieve together.