OPPS4Ep3

The transcript is a conversation between the host and a guest, Melita Olson, on a podcast called "Parallel Paths." They discuss the concept of chronic sorrow and how it relates to grief. The host shares her own experiences as a parent of a child with a disability and how her role has evolved but also stayed the same. They discuss the idea that as parents, it is okay to feel sadness and loss in the parenting journey. The guest explains that chronic sorrow and grief can blend into each other and that it is important to acknowledge and validate these feelings. They also talk about the various losses that parents may experience when they have a child with special needs. interview, I guess. All right, so, hey Diane, this is season 4, episode 3 of our Parallel Paths, and our person today is Melita Olson, and we're going to talk about chronic sorrow and or grief. Okay, so here goes. I'm gonna try not to make too much noise, make me proud, make you proud. Hello and welcome to season 4 of our Parallel Paths, a future for my loved one with a disability and for me. I'm your host Jerry, Dr. Geraldine Arango Dilley, and this podcast is about just what the title says, the Parallel Paths of family members, certainly parents, sometimes siblings as parents age or pass on, and their loved ones with intellectual disabilities. I'm a parent myself and I always have questions. Our Parallel Paths is about nurturing and supporting ourselves as we nurture and support our loved ones with intellectual disabilities. Our roles as family members are ever-changing and evolving alongside our loved ones, so there's more than one path, more than one future to talk about, and that's why we're here. And I hope that the stories and perspectives of my podcast guests and me give you hope, information, and ideas for your path. So a couple months ago, I came across an article in a 2022 issue of Psychology Today entitled, Chronic Sorrow, A Grief That Never Ends by Mark Shelvock. A grief that never ends. So one part of me is like, no thank you, been there, done that, turn the page, and one part, what does that title mean anyway? Because chronic sorrow is different from grief? As I read the article, I think the answer got a little clearer and I saw, although I didn't want to see, that chronic sorrow describes a bit of my own path and my life as it is. The author provided me with a new term, chronic sorrow, to describe a feeling in myself that I had really never named. The term chronic sorrow gave me a possible description of a part of my experience and my emotions about my son, my Nick, who has a significant disability. So I kind of want to flesh that out. You know, grief doesn't just disappear after someone dies, but in my experience, the person will always be gone, and yet the feeling of the loss evolves. What initially may feel like being pinned under a boulder and you can't get out from under it, can enlighten over time, and the boulder maybe hones down a little bit as you like share memories and stories of the person and celebrate their life because you're beginning to heal. Eventually, that boulder of grief smooths down even more into a rock and then maybe a stone, something that's small enough for you to carry in your pocket, but you'll always carry it. The other kind of grief can be anticipatory grief, as we're waiting for someone to die. What I'm hearing in both of these types of grief is die, hearing that permanent loss, that empty seat at the table. I kind of want to better understand chronic sorrow and if it applies to folks like us on the parallel path as a type of grief or what, because what do grief and chronic sorrow have in common? How's chronic sorrow different from grief? Because I don't think they're quite interchangeable, but I'm not sure. And if you or I or anyone you know experience chronic sorrow, what can we do to both acknowledge the feelings and the experience that might be coloring our lives to some greater or lesser extent, but to grow and thrive as well as we live in this experience with chronic sorrow, all the while supporting the loved one whose very being may be integral to why we feel some level of chronic sorrow. Now sidebar as I read this and I read other articles too, I realized that chronic sorrow is not just a feeling applicable to people impacted by the life of someone with an intellectual disability. So keep that in mind as you're listening today. Anyway, time to consult the bigger thinkers with the bigger answers and today I welcome Melita Olson back to our Parallel Paths. Melita's a licensed clinical social worker, a behavior specialist, a certified autism specialist, an advocate, and a mother of four. She's a senior director and co-founder of Spectra Support Services in Springfield, Pennsylvania. Hey! Listeners, you might remember Melita from season three of our Parallel Paths where she and I talked about individuation, that learning to step back a bit to do the work of letting parent and child, in this case Nick and me, to more clearly establish separate identities and that that does not make me a bad parent. And neither does asking the question on occasion, Jerry, what do you want? I'm still working on individuating and so listeners, if you haven't heard this individuation episode with Melita from last season, you might want to check it out and see if you find a little wisdom to consider because I did. So welcome again Melita and thank you for returning to the podcast. Another episode, another couple of questions. Always excited to be here. Yay! So I got to parse out this chronic sorrow grief thing and let me start by saying, to remove my guilt, I love my children. I have done my best to be a good parent. I have watched this role of parent change through the decades as my babies became adults, but in Nick's case I've also watched parts of my role stay the same, even as he edges toward 30. I mean sometimes it's no biggie, I know he needs support, but sometimes seeing my role stay the same can be really hard and it makes me kind of sad and sometimes I just go down this dark rabbit hole of worry too. That role staying the same also keeps me in roles many parents kind of grow out of as their children need less support. And so is this what we're talking about? Is this chronic sorrow? Is this grief? Is this something else? So I think that's a great question and I don't think that there are as many opinions about this as there are about other topics and so I think it really is about how you personally interpret it. There are research articles, there's starting to be research on this, but it's sort of a new way to frame what we've always known and so it's not easy to come out and say this is chronic sorrow and this is grief. I think there's a little bit of a way in which they kind of blend into each other and it really depends on how you use it. But let's get back to sort of the core issues. The core issues is that, or excuse me, the core issues are that we have little losses all the way through and one of the things I think as parents that we're sort of not really enculturated to embrace is that we have a right to anything that makes us sad about being a parent. So I can think back, and this is nothing to do with special needs, I can think back to when I was pregnant with my first child and everyone's just like has that image of baby and baby and infant is so wonderful and so amazing and so you're just gonna love it and I was like it sucked. I mean I don't mean I didn't have beautiful moments, I had a lot of beautiful moments, but I always say to people I was like I am not a baby mama. Like hand them to me at four or five years old, I'm golden, you know. But the guilt I felt for having that opinion that it wasn't okay to sort of say this is not fun, this is this is awful, I'm not sleeping, I'm tied to this human being, and it was just part of what I had to go through in my sort of transformation of my role, right? The role of who I was before I was a parent, the role of who I was to an infant who needs constant care, and then the other piece of it, whenever you have one loss they tend to be a little bit like Velcro, they kind of pick up other losses in your life and they sort of stick to each other. So we have to be aware of that as well, but as a parent I feel like we're sort of inculturated as though if any you experience any feeling of loss as a parent other than the actual loss of your child, you're not justified to have those sad feelings because as a parent you're supposed to love, and we sort of have, I think, modified our concept of love to not include loss. But love and loss go together, you know, like I once read something that, you know, said, you know, the opposite of love is not hate, it's fear, you know, or indifference or things like that. So it's about love being both and, and I think we tend to like to be dichotomous in our society, like to think it's this or that, and I think you can be a parent and you can be angry at your circumstances, for example, which is where I think this journey starts for a lot of people who come to know that their child has special needs. There is this fear, you know, and then there's confusion and then there's loss. There's this loss of lots of different things, like what would you say were some of the losses when you came to know Nick would be different? Gosh, I mean, we were so immersed in all of the health things that were sort of glaringly over-the-top different, but, you know, the fact that there were people in our house who were not there for when my daughter was there, all these early intervention, wonderful people, but there were a bunch of people coming through all week long to work with him at home because all those typical milestones weren't happening, and so as much as it was great to have all this help, I didn't need it the first time around, and it felt different, and I mean, I think of that really, really early on, and I think about the early, I mean actually a lot of the school years, of a lot of people reminding me that he wasn't what he was quote-unquote supposed to be, and that was really hard too, because I used to literally wait for the word but. They would tell me how wonderful he was, and I would just listen and be like five, four, three, two, but, and you know, you were like, you know. Right, so in that story alone, there's so many little losses, right? I can hear, there's a loss of your privacy, right? You have strangers coming in and out of your home. There's a loss of your own ability to kind of rate yourself as a parent, because you've all these professionals coming in telling you what you're doing right, and what you're doing wrong, and I remember myself, I used to be one of those professionals back in the day. I graduated with a master's degree at 23 years old, 22 actually, 22 years old, and I'm going into families homes doing early intervention, telling them how to discipline their kids, and I remember walking away like, who the heck am I? Who am I telling these? But I did have some good ideas, and I was trained, and I did have something to offer, but to really step back and recognize that I think there's a loss of being able to feel centered, that I am the expert on my own kid, which I think we more typically feel as a neuro, when we're talking about raising our neurotypical children, and it's almost like we're robbed of that security, that we know how to raise our child. Yeah, yeah. You know, that we're robbed of that security, so that it's, it's something that, a doubt that's always sort of sitting beside every decision we make, and I think there's also the loss that, in what you're saying, in that particular situation, there's this loss that my decisions for this child are short-term. You know, for example, I can, if you think about your older daughter, it's like, okay, you make a mistake, something you might look back on and regret. Like, for me personally, I, you know, I did the whole firmer method, let them cry it out. I regret that to this day. You know, that's my choice, and I don't, I'm not judging other people who do it. I just personally, personally have come to believe that was not a choice reflective of who I am and how I wanted to parent, and so I've listened to some expert, I did something, and I regretted it. But I also, when I came to that realization, like, oh, you know, and I didn't end up doing it with my other two children, I didn't say to myself, oh, I, I am not a worthy parent because I made this mistake, and I also didn't say to myself, that child is forever screwed up for the rest of their lives, and I feel as though when I interact in my own decisions with my own children that have various different kinds of special needs, and when I interact with parents like yourself, there's this sense of every decision is going to impact the rest of their life. Every single decision. I've got to get every decision right. So there's a loss of ability to make mistakes, and there's this loss of I'm allowed to stumble through this and, and, and make mistakes and not get it right, and their life is not doomed. And there's systems that are reminding us that all the time, and those are the systems that our children need. And so, you know, and for some people, they're truly seen as the experts. And so if the experts say I'm not doing it right, at an early age, then, you know, as my child grows and grows up and becomes an adult, that doesn't go away. Right. Yeah, exactly. Right. And so then that security, you just sort of, and that's what makes it a chronic loss. It's not like you lost it that day, that first professional made you doubt yourself. You now carry that as one of the, you know, to use your stone, a stone metaphor, you know, it's like you've got this stone in your backpack, you know, that that is just weighing you down because you, you know, somebody put it in there. I remember myself sitting in an ISP meeting, when my son, I think I may have mentioned this in other webcasts, but my son was in second grade, and it was an IEP, sorry, IEP for children, an IEP meeting. And they, I was trying to explain to them that every time he got home from school, he was having meltdowns. And they turned and said, What are you doing wrong? Yeah. No, he's holding it together in school, because he has, he's gifted enough to have that particular ability at this point in his life. And when he gets home and it's safe, he lets loose. But that's like an example of an expert looking, yeah, and making, you know, I was grateful that I had a professional background to say nay nay, you know, that's not right. I know, I know I'm right. I know it's the exact opposite. He's doing that around me because he feels safe, because he has not had a chance to let down all day long, and he just has to let go, because he held it together all day, and isn't that amazing. But it's, it's, it's those kinds of things, I think that, you know, it's that loss of kind of getting to parent in private, you know, it's like your parenting is being paraded in an IEP meeting, your parenting is being paraded when you go to a restaurant, and your child has a meltdown, because something that another child wouldn't be triggered by your child is or, you know, or you're, you're constantly being paraded, especially, you know, in your case, you know, there's two different situations. But you know, if you have a child with Down syndrome, or you have a child with cerebral palsy, or a child with other kinds of visible disabilities, then you can be just looked at. Oh, you know, that can be will be just looked at in public. And so there's this loss of, I could just walk through a mall and not be stared at, you know, or, you know, it's almost like we might want to call them like micro losses, you know, and it's when you have all these micro losses together, they kind of stitch themselves together, and they become about chronic grief, chronic loss or chronic grief, you know, chronic sorrow, right. So it's sort of like they kind of, you know, all play with each other. So, we're back. I think the other piece is chronic, right? The word chronic means there's no foreseeable end. And, and so we sort of culturally have this sense that grief has a process, it doesn't mean that you stop missing the person who has left your life, or you start missing the thing that has completely left your life, you know. My parents moved from New England to Pennsylvania, there was a, there was sort of a chronic grief to not living in New England, I don't think they ever fit in and loved Pennsylvania 100%. I think they liked it. But I think there was this chronic, like, you know, where I was raised where, you know, where I, and so that sort of chronic is because it doesn't get to resolve, but grief kind of has stages, as we know, and, and, and grief kind of, not everyone can move through them, but it has a pattern of resolution. But that's because the loss, it's like, the loss broke, like it broke. This is, this is almost, it kind of reminds me, my son actually, about a month ago, he bent his arm. I didn't know you could do that. It's literally called a green stick fracture. And the image that the doctor told me, so when they did the x ray, it didn't say that his arm was broken. It said no fracture, but the nurse or the seat, the doctor that was there, the PA that was there in that urgent care said, I've been around kids a long time, something is wrong with his arm. So the next day, we go to the orthopedist. And the orthopedist does another x ray, he looks at it, and he says, here, he puts these little dots, I don't know if you've ever had like an ultrasound or whatever, little dots, and he measures like, it's, it's bent, his arm is bent. And he's like, well, it's, it's bent. And he said, if you can imagine a stick, and unfortunately, your listeners can't see this. But if you imagine a stick, and you imagine when you bend it, it has all these micro fractures as you're bending, but it doesn't break, right? It's just not quite enough force to break, it just bends. So that metaphor kind of reminds me of sort of this chronic sorrow. It's like when it's a break, it's actually a little bit easier to heal, because you take the break, and you either cast it and put it back in the right space, and it heals, or you literally open up and pin it together, and it heals in the right space. And so it's a path to healing, it's painful, but it has a path to healing. And I feel as though chronic sorrow is kind of like getting your bone bent. Like, it's just these micro fractures. That's a helpful image. You know, it's like these micro fractures. And I think the most important piece is that just like the radiologist who read that first first x-ray, unless you know what you're looking for, unless you know the particulars of that particular condition, you're not going to notice. You're not going to notice. It's not going to be obvious. And I think that's what happens. I think that special needs parents carry with them sort of this chronic sorrow, and because it's not about things that other people feel sorrow about, they don't even notice it sometimes, and definitely others. So, la la la, what was I going to say? Yeah. All right. I think about a couple of different things. I heard you saying about chronic. I look at my notes, and I was saying to you beforehand that I didn't have like a linear group of questions for you. I kind of was like listening for where this was going, and that bend was really an interesting way of seeing it, because it had all the fractures. It had all these little micros, and I think that that is a way of kind of conceptualizing the bend, and the bend that is our lives. It's not the usual life, and what it's made of, and all these pieces. And I think about those little triggers along the way that all of a sudden you feel like, you know, I wish, I wish, and how to kind of get through those where you feel like, oh, I wish that my child didn't have such a hard time. You know, I used to say I would break, you know, cut off a body part if Nick's seizures would stop, and it was like, you can cut it off, but it's not going to stop it. You know, so you feel that sense of frustration. I remember telling my students, you know, when they would talk about an IEP meeting, and the parent was so difficult, and I would say, having been one, I said a lot of times what you're hearing may be directed at you, and what you're doing, or whatever, but first it goes through themselves. I think that the place that we went first was if I'd have only done something differently, if I'd have only, this wouldn't be a problem. So we go to a place where we internalize the things that our kids are struggling with as a failure in ourselves. Yeah, that's a really, that's a really good point, and I think it kind of dovetails on what I was, I was referencing earlier. I have found that, I mean, I've been a therapist now for 15 years, maybe, in clinical therapy. I've always, I've been a social worker for a lot, a lot longer than that, but in clinical therapy, it's been about maybe 15 years, and in that time frame, what I've really come to understand is that there has been this cultural shift, and I don't know, and we're not here to figure out the, you know, the philosophy behind it, but I will say that it's important to acknowledge that there's been this cultural shift, that if anything goes wrong, we're at fault, and I believe, you know, I think about that, you know, what was it like for my grandparents, and it was like, maybe it was too much the other way, it was like, God's punishing me, right, you know, God's punishing me because this went wrong, but, and I don't think that's healthy either, but I think the piece of which that made it a little bit better was that it wasn't my fault. It's almost as though we, you know, we can call it all kinds of names, but it's almost as though the responsibility, and this is what I was referencing before, the responsibility that everything goes perfectly for my child is mine. Mine as their mother, or mine as their father, or mine as their their caregiver, whatever it is, it's like everything is my responsibility, and that weight is just so overwhelming, and it's not possible. That's the other piece, it's not possible, and you can do everything right, you know, there's parents out there who may be listening to this who have children with or without disabilities who went off the rails and struggled with drug addiction, or struggled with alcohol, or struggled with other things, and those parents are saying the same thing. Where did I go wrong? What did I do? How did I not? Yeah, that's what I was saying about like, you know what, this is not just the purview of the parent of a person with an intellectual disability, and I thought of that. People whose children have some form of mental illness, people whose children have a, you know, substance abuse problem, that you're doing that same thing, and feeling those feelings of, if only, you know, I had done, I had done something different, and that's not fair, but it, but it is. It's not, and I think that, so when we talk about, you know, the chronic part of sorrow, I think part of it, you know, the whole idea is that it's never-ending, right? Nick is going to have Down Syndrome today. Nick had Down Syndrome the moment he was conceived, and Nick will have Down Syndrome someday on his last breath. Yep. He has Down Syndrome, you know. I have a son on the autism spectrum. He had it day one. We didn't know it then. We came to know it. We know it now. He'll have it forever. So there's this sense of that piece is not changeable. So I think when we start trying to think about it, the first piece is to feel entitled. Entitled to the sorrow that comes with things that are not changeable. It's, you know, it's almost the serenity part, right? Grant me the serenity to understand the things that I can't change. What is not in my control, but that doesn't mean that I don't get to be mad about it, or I don't get to be upset, or I don't get to deal with it in whatever way works for me. And I know when I'm working with parents, when they're newly diagnosed, one of the things that's the biggest challenge is that they have very different ways to handle it. If there is a situation where you have two parents, for example, you'll have one parent, and it doesn't necessarily follow gender lines, it's personality driven. I was on my list of questions when mom and dad or whoever take it differently. Absolutely. One parent can go, Holly, and I'm going to find every, you know, I'm going to find the right diet, I'm going to find the right doctor, I'm going to find it, and they just go all into action mode. And then some people freeze, right? And some people avoid it. I mean, it's stress. So just like any stress, you can, you know, we always think fight or flight, but there's fight. So there's parents that get the fight in them. There's flight, like they just escape either into, by literally escaping, you know, unfortunately, people just walk away. You know, people unfortunately say, I can't, you know, yeah, it might be the right decision for them, but they can't care for that child. So they have to make that very, very heart wrenching decision. But so you have fight, you have flight. But what people also don't realize, there's also freeze, right? There's also this just, I just freeze, I just don't know what to do. I don't know how to handle it. This is, this is not something you have a script for. We don't have a script for parenting to begin with, other than let me copy what my parents did or decide to be the polar opposite and some combination. Right, right, right, right. So I'm combination thereof. But we don't have a script for how to be a special needs parent, right? There's no script for that. And at the same time, we're trying to develop our own script, we're getting judged at all sides. So it's, it's really, really difficult. So I think one piece of this is, how do we get to the chronic sorrow of just saying, I get to be sad, I get to be sad that, that, that, that this is difficult for me. That's not selfish. That's human. You know, it's human to say this is difficult. This is hard. This, this is, this is more, it's long term, it's more than I signed up for. And that's what makes it have parallels. Like chronic sorrow kind of was born out of this relationship, a parent of a special needs child. And then they said, well, it's also what it's like for the spouse or child caregiver of a parent with dementia, which is another road you're familiar with. And then it's also the journey of someone with chronic illness. If you, you know, you have a, if you have Parkinson's disease, or you have multiple sclerosis, or something like that, it's, yeah, it's, it's not going to let go, like, there's not going to be this letting go. So how do I learn to cope with it. And I think part of it is, first of all, acknowledging it, I have a right to say that anything that's chronic is just hard. You know, I often say to myself, like, I'm blessed, I don't have, at this moment in my life, I'm sure someday that I might might, but at this moment in life, I don't have any chronic illness that causes pain, but I have relatives that do, I have relatives that live in absolute chronic pain. And so when I get like, that headache that like, won't go away for two days, once in a great while, I'm like, how the hell do you look like this? And I feel that compassion for other parents that are physically caring. I've seen 80 pound mothers in their 60s, lifting, you know, 150 pound, you know, children, you know, taking care of them. So our first stop is to just acknowledge that, yeah, sometimes this is just so hard. And you're not supposed to feel guilty for thinking it's hard. That's the key also. That's the piece. It's, it's okay to say it's hard. And it's okay to not feel guilty that it feels hard. It is hard. It is hard. It is absolutely hard. But it's not hard because you set it up that way. You didn't set it up that way. It's not hard because you screwed up and your child is this way. And when that moment when you're about to have a good cry, because it's just too much. Any ideas? Besides, I mean, I'm a fan of a good cry, you know, but you have a good cry, right? You have a good cry. And you, you, you just, you, you acknowledge not just that it is hard. But you also acknowledge there's a part of my heart that wishes I had the magic wand that could fix this, whatever this is, you know, if this is, you know, part of what you're saying, I think one of the hardest parts, I just went through this recently with one of my own children, and they're also young adults. And, and I have to be careful because she might listen to this. But when I went through this with my child, you know, just sort of being like, it's just so helpless. When I see you struggling, and I can't fix it, you know, like, it's so helpless to stand back and just be the parent that lets you go through it on your own and figure it out. And I know you're capable of it. It's not that I didn't believe that, that my child was capable of it. They're absolutely capable of it. But it was just like, I just had to say, this is just so hard, because seeing you suffer hurts. What hurts you hurts me. And that connection is what's so powerful, you know, and so, and I think maybe that's a piece of what you're alluding to, I think they don't ever completely leave the nest. They don't, you know, not in the same way, not in the same way. And Nick is living here in the condo. And people sort of say, Oh, it's so great. I've heard this a couple times lately, that he's independent. Oh, okay. But then it's like, you know, or you're retired from your job. And now you're going to use this freedom. And it's like, No, I spent a lot of time on 95 back and forth. You know, I do a lot of texting, I do calling, I do whatever to kind of keep this going. There's so much else going on that yes, it's all about his interdependence. But this is this is work most people don't have to do at their 26 year old child, you know, not at least not to this extent. I'm glad I'm doing it. I love seeing the success. And Michael, my husband is always kind of reminding me like, yeah, we're gonna have high turnover, we're gonna have, you know, stuff. But to me, it's like, well, why don't you like my son? Or why don't you like me? And it gets all very personalized. And it's, and that's, I think, that piece of the sorrow of like, well, is it me? Or is it him? Or, you know, just going those blamey places. Yeah, and that's so when you say, what do you do after you go to cry, you go, you go and you just, you just say, I had this wonderful worker that used to go around and just say, it is what it is. And I love that because and she would do that. Well, we'd have this big crisis in a behavioral health person, all this other stuff, because I, you know, I work with this population. And then when it's all over, she's just like, it is what it is, it was what it was. And now what, you know, and I think that that's part of it is just being able to say it is what it is. In other words, you know, I can't change it. It is what it is. It's not my fault. Which is probably something to sort of like have as a mantra, you know, that you have to continually remind yourself of that. Yes. And that's where after I had the smaller pity party, then I can go back to that and say, No, we're doing the best we can. It isn't my fault, you know, and people are, you know, like, you have to kind of, kind of recalibrate a lot, you know, where I, in all fairness to the whole wide world, I can't generalize the whole wide world, but where other more typical situations, that's done, you know, or rarely revisited, but it's a constant. I think what's really important here, and it's interesting, because before we started, we were chatting, and you mentioned something about when people feel sort of compassion for loss, you know, the next sentence often is something, it's funny, I grew up on Annie the musical, it's like, the sun will come out tomorrow, right? That's always the next race. So you know, you lose someone, I'm sorry for your loss, they're in a better place. You know, so somehow, this happy thing, which can be equally true, right? There are a lot of people when, when, you know, if you believe in an afterlife, and even if you don't, like if somebody was really chronically suffering with dementia, suffering with physical illness, suffering with pain, and they they pass away, we can say, Oh, that pain is ending. But that relief doesn't, there's, it's not a wipeout, it doesn't just wipe out the other pain, you know, they're held together. And I think that if there's a central theme to this, it's like, how do you hold both emotions together, and you know, the chronic sorrow and the chronic is a funny word to use, but sort of this chronic joy to, you know, it's, it's you, you, it was unexpected sorrow, right? You didn't expect, nobody expects to have a child with special needs, nobody goes, you know, seeks or doesn't seek to, you know, become a parent. And well, I shouldn't say that some people do, they adopt children with special needs. But by and by and large, most people don't know what's going to happen until it's upon them. And when it's, you know, upon you, whether, you know, by choice, which I greatly admire, we have more and more people doing that, which is such a blessing to to our whole society. And that you you have to recognize that you're trying to hold both, you know, you're trying to hold, there is a joy in it. You know, there are there are things that you've experienced that no other parent has experienced. And there are things about you as a mother and a person that would have never grown had you not been Nick's mother. I would like to believe that. And I kind of sometimes do, you know, and the other thing is about what you would not have been or who you would not have met is the, I think, the importance of the people in your life. And I divide them up into the people, when you see them, you have to kind of start your story with what, you know, once upon a time, like you're starting from the beginning. And I found tremendous comfort, and all kinds of other good stuff, validation, support, fun with the friends that I start the sentence with. And then this happened. You know what I mean? There's people who are kind of, you love them, and they're everything, and they're wonderful, but they don't really kind of get this. And so other family members of people with disabilities, they may get it. And sometimes that that particular friend or two or group or whatever, that you're knowing that you have an identity within that can be a way to cope with the sort of sorrows that we can feel, because they feel them sometimes too. And they and they even if it's somewhat different, it's in that in that area. I think what you're trying to say is that the sense of community does two things. The one thing the sense of community does is it helps to reinforce that you have a right to that sorrow, right? That you have a right to that sorrow, because you're not alone, right? That's the other thing. I mean, it's the isolation has got to be one of the most intense parts of being a special needs parent. And so when you can make those connections, and you can have that sense of community, you feel embraced, and you feel one of the one of the joys, right? One of the joys is having a sense of community. That is, you know, and honestly, neurotypical parents, I can tell you, it's been hard. I have found it so difficult to create community among parents. Yeah, I mean, with my kids in the 2000s, and still, I still have a middle schooler, so I'm still rated, but it's like the sense of community, even in the 11 years between my oldest and my youngest, it was like, it's just, it's, it's changing. That's interesting, because, you know, the one of the first things when I found out Nick was gonna have Down syndrome, was I went to Barnes & Noble, go get a book that was babies with, you know, Down syndrome, a new parent's guide. And I'm like, All right, here we go. And the back it said support groups. And I'm looking and in Pennsylvania, it was like, Oh, it's in the next town. The next town, it was in Springfield. And I went to Hancock Methodist Church and sat down with a whole room full of people in my big pregnant self. And it was like, Oh, and that was a great place to start, you know, with just sort of saying, Oh, other people, you know, and look, look at those kids. Oh, my God, that baby so cute, you know, just that little bit. And I'm not as much a member of all I mean, part of that group as I once was, but we get to the Christmas party, we get a holiday party, you know, all those things. And everybody is, you know, there's, there's a level of, of how much fun can a whole group of young people have, and cha-cha all around the room kind of thing, like there's this joy. And so which is not to be stereotypical, but it's just like, yeah, this is just, I don't know, it's just different. And there is a lovely camaraderie, even with people you don't know very well. Because we're all yeah, yeah, and that can be really, really powerful. But I think you also are what your story just reminded me of is that we sort of go through these stages where it's it plateaus, it being sort of this sense of loss can kind of plateau for a time. And we kind of feel a little healed. And then I think sometimes it surprises us when the next stage makes us feel it again. So for example, you know, it's like, okay, you get to, you know, 14, 15, and you finally sort of have school figured out you, you know, I know that a lot of people unfortunately don't have that, that luxury, but you kind of got it figured out, you kind of know what you're doing. And then all of a sudden, 14, then they hit puberty. And so the kid that was, you know, really listening and able to be responsive, and you had this bond with, I mean, this happens to all parents, and then they turn into what? You know, for our population, that it can mean really serious stuff. It can mean being attacked, it can mean parents walking out with black and blue eyes, it can mean, you know, a lot of things where all of a sudden, it's like, oh, my gosh, I have to acknowledge that something like that, you know, that's a loss, that's a huge loss to say, I'm not safe around my own child. My child that I gave birth to is not safe for me to be around, and some families have to even have no choice, because the right supports are not there, or that child just cannot exist in a home environment. They have to make that really heart-wrenching choice to have supports, you know, in a different place. And that's a loss, so it's like, loss, loss, but it's like, at each stage, you know, and then you're always on that, you know, I'm thinking about the title of your podcast, Parallel Paths, and it also reminds me, too, that no matter how hard we try, I think we still, I say we, because I'm also, you know, a parent of special needs, I just had this happen to me, where one of my children was going through something, and then maybe two or three days later, I'm talking to one of my best friends from high school, and her child, approximately the same age, she was about to go get on a plane and move him to Texas for his first job, and he was getting his first apartment, and I was just like, and you're just like, why is it so hard, you know, and why can't my child be on that timeline, and why, and why, and why, and why, and why, and why, and why, and then it's just, and it's to your point, we have the pity party, we say, it's not fair, I wish it were easier for my kid, and then, you know, then you turn around, and you look at what's right in front of you, I think that's the other question you're asking, it's like, what do you do when you get out of the pity party, you look, and you look for what is different that wouldn't have happened if that child wasn't, you know, I use the term wired that way, because of the way, you know, my son's on the spectrum, or that child wasn't born with those differences, what would be different, and so, for example, one of the things that went terribly wrong, what that person ended up in a position where they're, that child of mine is now really having an impact where they are, and so being like, wait, they were meant to be here, and I was just so stuck on the traditional trajectory, that if I can let go of that some more, and just embrace where that person is, and it doesn't matter, like, as long as that person is on the road to happiness, and I think we have to, that's another piece, we have to be on the road to happiness with ourselves and our kids, never, I think we always want our kids to be happy, and every time they're not, that's a whole other topic, that's not even in the podcast. Well, you know what, and that's the truth, to be able to, and I think it takes a lot of resolve, but to just sort of say, yeah, this is who this person is, and this is who they helped to make me, and that's, and like, kudos me, you know, I mean, with all the blame I can lay on myself, and I can do a good job of that, it's like, force yourself to say, you know what, wow, you know, and stay there for a minute, it could last as long as, it's not longer than the pity party, and that would be nice too, but maybe let's be a little nicer to ourselves. Yeah, I hear that, it's funny, it reminds me, I tell this story a lot sometimes when I'm doing counseling, that was contradictory, but when I'm counseling, maybe they can edit that out, when I'm counseling, I love to go back to this story, and I still remember it, I remember sitting in a Lamaze class kind of thing, you know, a child birth class, and the nurse who was running it looking and saying, you're gonna call it a good day when you get a shower, and I remember just being like, get out of here, this cannot be true, until you're living it, and then you're like, yeah, it's a good day when you get a shower, and I think that's part of what we have to do, is lower, I don't know where these, like, off-the-chart perfectionistic expectations have come from, of what we're supposed to be at all times, and that we're supposed to be this protector, and that is another, you know, that's the whole concept of not allowing our kids to fail, and failing forward, and all of those things, and that's a whole nother, sort of intertwined with individuation, you know, but being able to just, you know, I'm hearing Elsa in my head, you know, let it go, just let it go, like let it go, and let go all those expectations, and trying to hold yourself accountable for every little thing, and just embrace what's right in front of you, that kind of mindfulness mindset, you know, it's like, what is right here, right now, where's the miracle in this moment, and it might be sitting beside some pretty crappy stuff, okay, okay, you know, just say, okay, it is what it is, there's crap, and there's good, but never to get too focused on either one, you know, like, because when you ignore the crap, it grows, it fills, yeah, let's be a little nicer to ourselves, yeah, absolutely, all right, well, thank you, thank you for sharing the wisdom, and the expertise, I think chronic sorrow, and as I said at the very beginning of the podcast, this may resonate with families, and we said it too, with, of course, people with intellectual disabilities, but also maybe those with family members who might be experiencing mental illness, or perhaps addictions, and because of that feeling, and the same wisdom applying, you know, can I interject one more thing, I have this slide, I do this, used to do this workshop, called Next Steps into Adulthood, and did it, been very blessed to be, had the opportunity to do the keynote, and so these are families that are coming in, trying to, you know, kids are 14, 15, 19, 20, trying to figure out how do I support them as they fall off the service cliff at 21, blah, blah, blah, and there's this amazing slide, and I don't know the origin of the quote, so if someone finds it, please let us know, but it basically is this beautiful quote by someone who's autistic, and it goes through, don't mourn for who we are, take a minute, and mourn who you thought we were going to be, and when you're done with that, leave it, basically leave your grief over here, and you know, and we'll go, let's all keep going, let's all keep going, you know, and just like, it's like, you're not really mourning for me, you're mourning who, for who you thought I should be, could be, would be, that's who, that's what you're mourning, and when we let go of that, and it's hard, and it's not a one-time letting go, I think that was what I was trying to say about that last story, it's not a one-time letting go, it's ongoing, it's ongoing, it's chronic letting go, and I think of it kind of like a slinky, you know, this slinky, and it's a spiral, so you're cycling, so you're getting better, and you're improving, but you're cycling, you know what I mean, you're getting, you're holding it vertical, you're on your way up, but you're going to cycle through. All right, all right, well I hope that that, even that image can give us, give hope, you know, to those of us who are on the parallel path, and you know what, to those who are walking on other parallel paths too, you know. So listeners, thank you so much for spending time with us on today's episode with Melita Olson on our parallel paths. I hope that you will like and follow our podcast, that you'll share it with family and friends, and I really hope that you'll return to listen and learn from more stories of people like you and me, and our loved one with a disability on our parallel paths. You're not alone, and I'll see you next time.