Dr. Geralyn Arango-Deeley (00:12): Hello and welcome to Season Four of Our Parallel Paths: A Future For My Loved One with a Disability... and For Me! I'm your host Gerry, Dr. Geralyn Arango-Deeley, 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. (00:41): 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. (01:12): 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. (01:54): 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 Nic, 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. (02:28): What initially may feel like being pinned under a boulder and you can't get out from under it can lighten over time. And the boulder maybe hones down a little bit as you, like, share memories and, and stories of the person and celebrate their life because you are 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. (03:19): 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, 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. (04:06): 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 Maleita Olson back to Our Parallel Paths. Maleita is 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. Maleita Olson (04:45): Hello. Dr. Geralyn Arango-Deeley (04:46): Listeners, you might remember Maleita 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, Nic and me, to more clearly establish separate identities, and that that did not make me a bad parent. And neither does asking the question on occasion, "Gerry, what do you want?" I'm still working on individuating. And so listeners, if you haven't heard this individuation episode with Maleita from last season, you might want to check it out and see if you find a little wisdom to consider, because uh I did. So welcome again, Maleita. And thank you for returning to the podcast. Another episode, another couple of questions. Maleita Olson (05:36): Always excited to be here. Dr. Geralyn Arango-Deeley (05:37): Yay. So I gotta 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 Nic'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 roles 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? Maleita Olson (06:40): 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. Uh there are research articles. There's starting to be research on this. But it's sort of uh, a new way to frame what we've always known. And so, it, it's not easy to come out and say, "This is chronic sorrow and this is grief." Dr. Geralyn Arango-Deeley (07:08): Mm-hmm. Maleita Olson (07:08): 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, 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 has 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. So you're just going to love it. And I, I was like, it sucked. (laughs) Dr. Geralyn Arango-Deeley (07:58): (laughs) Maleita Olson (07:58): Like, like, like, I mean, I don't mean I didn't have beautiful moments. Dr. Geralyn Arango-Deeley (08:04): Mm-hmm. Maleita Olson (08:04): I had a lot of beautiful moments. But I always say to people, I was like, I am not a baby mama. Like, uh, 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- Dr. Geralyn Arango-Deeley (08:18): Mm-hmm. Maleita Olson (08:18): 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, 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 uh 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. Dr. Geralyn Arango-Deeley (08:51): Ooh. Maleita Olson (08:52): And they sort of stick to each other. So uh we have to be aware of that as well. But as a parent, I feel like we're, we're sort of enculturated as though if any, you experience any feeling of loss as a parent, other than the actual loss of your child- Dr. Geralyn Arango-Deeley (09:07): Mm-hmm. Maleita Olson (09:08): 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, " The opposite of love is not hate. It's fear.", or- Dr. Geralyn Arango-Deeley (09:34): Or indifference, yeah. Maleita Olson (09:35): Or indifference or things like that. So it's, it's, 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. Dr. Geralyn Arango-Deeley (09:43): Mm-hmm. Maleita Olson (09:44): 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 Nic would be different? Dr. Geralyn Arango-Deeley (10:15): 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 this 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. Um uh 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 "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 feel like, ah, you know. Maleita Olson (11:28): Right. So, so in that story alone, there's, there's so many little losses, right? Dr. Geralyn Arango-Deeley (11:34): Mm-hmm. Maleita Olson (11:34): I can hear there's a loss of your privacy, right? You have strangers coming in and out of your home. Dr. Geralyn Arango-Deeley (11:40): Mm-hmm. Maleita Olson (11:40): There's a loss of your own ability to kind of rate yourself as a parent because you have all these professionals coming in telling you what you're doing right and what you're doing wrong. Dr. Geralyn Arango-Deeley (11:52): Yes. Maleita Olson (11:52): I remember myself, I used to be one of those professionals back in the day. I, 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, of being able to feel centered that I am the expert on my own kid, which I think we more typically feel- Dr. Geralyn Arango-Deeley (12:31): Yeah. Maleita Olson (12:31): When we're talking about raising our neurotypical children- Dr. Geralyn Arango-Deeley (12:34): Yeah. Maleita Olson (12:34): And it's almost like we're robbed of that security that we know how to raise our child. Dr. Geralyn Arango-Deeley (12:40): Yes, yes. Maleita Olson (12:40): 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. Dr. Geralyn Arango-Deeley (12:51): Mm-hmm. Maleita Olson (12:51): And I think there's also the loss that uh 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, something you might look back on and regret. Like, for- for me, personally, uh, I, you know, I did the whole Ferber method, let them cry it out. I regret that to this day, you know? Dr. Geralyn Arango-Deeley (13:18): Hmm. Maleita Olson (13:19): That's my choice. I mean, I don't- Dr. Geralyn Arango-Deeley (13:20): Mm-hmm. Maleita Olson (13:20): ... I'm not judging other- Dr. Geralyn Arango-Deeley (13:21): Yeah. Maleita Olson (13:21): ... people who do it. I just personally- Dr. Geralyn Arango-Deeley (13:23): Yeah. Maleita Olson (13:23): ... personally have come to believe that was not a choice reflective of who I am and how I wanted to parent. Dr. Geralyn Arango-Deeley (13:30): Yeah. Maleita Olson (13:30): And so, I'd listen to some expert, I did something, and I regretted it. But I also ... when I came to that realization, like, "Ooh", 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." Dr. Geralyn Arango-Deeley (13:56): Mm-hmm. Maleita Olson (13:57): 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. Dr. Geralyn Arango-Deeley (14:13): Mm-hmm. Maleita Olson (14:13): I've got to get every decision right. So, there's a loss of ability to make mistakes. Dr. Geralyn Arango-Deeley (14:18): Mm-hmm. Maleita Olson (14:19): 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. Dr. Geralyn Arango-Deeley (14:27): And there are 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. Maleita Olson (14:52): Right. Dr. Geralyn Arango-Deeley (14:53): Yeah. Maleita Olson (14:53): Exactly. Right. And so then, that security, y- you just sort of ... a- 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 s- 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. (15:16): I remember myself sitting in an ISP meeting when my son ... I think I may have mentioned this in the la- other ... (laughs) other webcast, but my son was in second grade and it was I- 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. (laughs) Dr. Geralyn Arango-Deeley (15:38): Ohhh. Maleita Olson (15:38): And I was just, like, "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." Dr. Geralyn Arango-Deeley (15:53): Mm-hmm. Maleita Olson (15:53): But that's like an example of an expert looking- Dr. Geralyn Arango-Deeley (15:56): Yeah. Maleita Olson (15:56): ... and- and making ... you know, I was just grateful that I had a professional background to say, "Nay nay." (laughs) Dr. Geralyn Arango-Deeley (16:01): Mm-hmm. Maleita Olson (16:01): You know, that's not right. I know- I know I'm right. Dr. Geralyn Arango-Deeley (16:04): Right. Maleita Olson (16:04): I know it's the qu- 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- Dr. Geralyn Arango-Deeley (16:19): Mm-hmm. Maleita Olson (16:19): ... that, you know, it's that lost it ... of kind of getting to parent in private. You know, it's like your parenting is being paraded- Dr. Geralyn Arango-Deeley (16:27): It's very public. It is, yeah. Maleita Olson (16:28): ... in an IEP meeting. Your- 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 if, you know, if you have a child with Down's Syndrome or you have a child with cerebral palsy or a child with other kinds of visible disabilities- Dr. Geralyn Arango-Deeley (16:50): Mm-hmm. Maleita Olson (16:50): ... then you can be just looked at (laughs)- Dr. Geralyn Arango-Deeley (16:53): Oh, yeah. Oh, yeah. Maleita Olson (16:54): ... you know, in pub- ... not can be, will be - Dr. Geralyn Arango-Deeley (16:55): Mm-hmm. Maleita Olson (16:56): ... just looked at in public. And so, there's this loss of I can just walk through a mall and not be stared at, you know, or- Dr. Geralyn Arango-Deeley (17:03): Yeah. Maleita Olson (17:03): ... you know? Dr. Geralyn Arango-Deeley (17:03): Mm-hmm. Maleita Olson (17:05): And so, there's just- it's- it's almost like we might wanna call them, like, micro-losses. You know? Dr. Geralyn Arango-Deeley (17:09): Okay. Maleita Olson (17:10): And it's when you have all these micro-losses together, they kind of stitch themselves together and they become about chronic grief ... a- a- um, chronic loss or- or- or chronic grief, you know, um, chronic sorrow. Right? Dr. Geralyn Arango-Deeley (17:23): Chronic sorrow, yeah. Maleita Olson (17:23): So, it's sort of like they kind of, you know, all play with each other. I think the other piece is chronic, right? The- 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 m- missing the person who has left your life- Dr. Geralyn Arango-Deeley (17:45): Right. Maleita Olson (17:45): ... 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 (laughs) to- to not living in New England. Dr. Geralyn Arango-Deeley (17:57): Mm-hmm. Maleita Olson (17:57): I don't think they ever fit in- Dr. Geralyn Arango-Deeley (17:59): Oh. Maleita Olson (17:59): ... and loved Pennsylvania- Dr. Geralyn Arango-Deeley (18:00): Okay. Maleita Olson (18:00): ... 100%. Dr. Geralyn Arango-Deeley (18:00): Okay. Maleita Olson (18:01): I mean, they liked it- Dr. Geralyn Arango-Deeley (18:02): Okay. Maleita Olson (18:02): ... but I think there was this chronic, like, you know, where I was raised- Dr. Geralyn Arango-Deeley (18:06): Mm-hmm. Maleita Olson (18:06): ... where, you know ... A- and so, that sort of chronic is because it- it doesn't get to resolve but- but grief kinda has stages, as we know, and- and- and grief kind of ... not everyone can move through them- Dr. Geralyn Arango-Deeley (18:17): No. Maleita Olson (18:17): ... but it- it has a pattern of- of resolution, but that's because the loss ... it's like the loss broke, like, it broke. This is ... this is almost a- it kind of reminds me, my son actually, about a month ago, he bent his arm. I didn't know you could do that. Um, it's- Dr. Geralyn Arango-Deeley (18:34): (laughs) Bent his arm? Maleita Olson (18:34): ... something ... Yeah. Dr. Geralyn Arango-Deeley (18:34): Okay. Maleita Olson (18:35): 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. Dr. Geralyn Arango-Deeley (18:44): Okay. Maleita Olson (18:45): Um, it said no fracture, but the- the doctor that was there, the PA that was there in that urgent care said, "I'veI been around kids a long time. Something is wrong with his arm." So, the next day, we go to the orthopedist and the orthopedist, uh, does another X- ray, he looks at it and he says, "Here" and he puts these- those little dots ... I don't know if you ever had, like, an ultrasound or wh- Dr. Geralyn Arango-Deeley (19:05): Mm-hmm. Maleita Olson (19:05): ... but these little dots, and he measured it. He's like, "It's- it's bent. His (laughs) arm is bent." I said- Dr. Geralyn Arango-Deeley (19:10): (laughs) Maleita Olson (19:10): ... (laughs) "What are you talking about?" And he's like, "Well, it's- it's bent," and he said, "If you can imagine a stick," and- Dr. Geralyn Arango-Deeley (19:17): Mm-hmm. Maleita Olson (19:18): ... unfortunately your viewers can't see- 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- Dr. Geralyn Arango-Deeley (19:26): Yeah, yeah, yeah. Maleita Olson (19:26): ... as you're bending it- Dr. Geralyn Arango-Deeley (19:27): Okay. Maleita Olson (19:28): ... but it doesn't break." Right? Dr. Geralyn Arango-Deeley (19:30): Mm-hmm. Maleita Olson (19:30): It doe- it's just not quite enough force to break. Dr. Geralyn Arango-Deeley (19:32): Mm-hmm. Maleita Olson (19:33): 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- and pin it together and it heals in the right space. And so, it- 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. (laughs) (20:05): Like, it's just this micro-fracture- Dr. Geralyn Arango-Deeley (20:07): All right, that's- that's- that's a helpful imagine. Yeah. Maleita Olson (20:09): You know, it's like these micro-fractures and I think w- the most important piece is that, just like the radiologist who read that first- first X-ray- Dr. Geralyn Arango-Deeley (20:19): Yeah. Maleita Olson (20:19): ... unless you know what you're looking for, unless you know the particulars of that particular condition, you're not gonna notice. Dr. Geralyn Arango-Deeley (20:28): Huh. Maleita Olson (20:29): You're not gonna notice. It's not gonna be obvious. Dr. Geralyn Arango-Deeley (20:32): Okay. Maleita Olson (20:32): And I think that's what happens. I think that- that- that special needs parents carry with them sort of this ... this chronic sorrow, and because it's not about things that other people feel sorrow about, they don't even notice it sometimes- Dr. Geralyn Arango-Deeley (20:49): Yeah. Okay. Maleita Olson (20:49): ... and definitely others. Dr. Geralyn Arango-Deeley (20:51): All right. Um, I think about a couple different things. I'm- I'm- I heard you saying about chronic. I- 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 kinda was, like, listening for where this was going, and that bend was really an interesting way of seeing it, because it had all the fracture, it had all these little micros, and I think that is a way of kind of conceptualizing the bend, and the bend that is our lives. It's not the usual life- Maleita Olson (21:28): Mm-hmm. Dr. Geralyn Arango-Deeley (21:28): ... 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 "Ugh," you know, I wish, I wish, and how to kind of get through those where you feel like, "Oh, I- I wish that my child didn't have such a hard time." You know, I always used to say I would break ... you know, cut off a body part if Nic's seizures would stop, and it was, like, you can cut it off, but it's not gonna stop it. You know, so you feel that sense of- of frustration. I remember telling my students, you know, when they would talk about a IEP meeting and the parent was so difficult, and I would say, (laughs) having been one, um, (laughing) whoops, 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.. (22:32): So, we- we go to a place where we internalize the things that our kids are struggling with as a failure in ourselves- Maleita Olson (22:41): Yeah, that's a really- Dr. Geralyn Arango-Deeley (22:41): ... and- Maleita Olson (22:42): ... that's a really good point- Dr. Geralyn Arango-Deeley (22:43): Yeah. Maleita Olson (22:43): ... and I think it kinda dovetails on what I was- I was referencing earlier. I- I have found that. I mean, I've been a therapist, now, for, uh, 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 timeframe, 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, (laughs) 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. (23:20): You know, I think about that, you know, what was it like for my grandparents, and I- and it was, like, maybe it was too much the other way. It was- Dr. Geralyn Arango-Deeley (23:28): (laughs) Yeah, I was gonna say- Maleita Olson (23:28): ... like, well, God's punishing me. Dr. Geralyn Arango-Deeley (23:29): ... very different. Maleita Olson (23:30): Right? Dr. Geralyn Arango-Deeley (23:30): Yeah. Maleita Olson (23:30): You know, God's punishing me because- Dr. Geralyn Arango-Deeley (23:31): Mm-hmm. Maleita Olson (23:31): ... this went wrong. But- and- 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- 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, it's- Dr. Geralyn Arango-Deeley (23:53): Mm-hmm. Maleita Olson (23:53): ... like the responsibility that everything goes perfectly for my child is mine- Dr. Geralyn Arango-Deeley (23:56): Yeah. Maleita Olson (23:57): ... mine, as their mother. Dr. Geralyn Arango-Deeley (23:59): Yeah. Maleita Olson (23:59): 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. Dr. Geralyn Arango-Deeley (24:14): It is not. Maleita Olson (24:16): 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- and- and struggled with drug addiction or struggled with alcohol or struggled with other things- Dr. Geralyn Arango-Deeley (24:30): Mm-hmm. Maleita Olson (24:30): ... and those parents are saying the same thing- Dr. Geralyn Arango-Deeley (24:32): Yes. Maleita Olson (24:32): ... "Where did I go wrong? What did I do?- Dr. Geralyn Arango-Deeley (24:34): That was- Maleita Olson (24:34): ... How did I not_ (laughs)- Dr. Geralyn Arango-Deeley (24:36): Yeah, that's what I was saying about, like, you know what? This is not just the- the purview of the parent of a person with intellectual disability. Maleita Olson (24:41): It's not. Dr. Geralyn Arango-Deeley (24:42): And I thought of that. People who- whose children have some form of mental illness- Maleita Olson (24:47): Mm-hmm. Dr. Geralyn Arango-Deeley (24:47): ... people whose children have a- a, you know, substance abuse problem- Maleita Olson (24:51): Mm-hmm. Dr. Geralyn Arango-Deeley (24:51): ... that you're doing that same thing and feeling those feelings of, "If only, you know, I had done s- I had done something different"- Maleita Olson (25:00): Mm-hmm. Dr. Geralyn Arango-Deeley (25:00): ... and- Maleita Olson (25:02): So, I think- Dr. Geralyn Arango-Deeley (25:02): ... that's not fair, but- Maleita Olson (25:04): It's- Dr. Geralyn Arango-Deeley (25:05): ... it- (laughs) but it is- Maleita Olson (25:05): It's not, and I- and- Dr. Geralyn Arango-Deeley (25:05): ... as it is. Maleita Olson (25:06): ... 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? Nic is going to have Down's Syndrome today, Nic had Down's Syndrome the moment he was conceived, and Nic will have Down's Syndrome some day on his last breath. Dr. Geralyn Arango-Deeley (25:23): Yep. Maleita Olson (25:23): He has Down's 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. Dr. Geralyn Arango-Deeley (25:40): Mm-hmm. Maleita Olson (25:40): 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 the ... you know, it's almost the serenity prayer, right? Dr. Geralyn Arango-Deeley (25:53): Mm-hmm. Maleita Olson (25:54): Gra- grant me the serenity to understand the things that I can't change- Dr. Geralyn Arango-Deeley (25:59): Mm-hmm. Maleita Olson (25:59): ... what is not in my control. Dr. Geralyn Arango-Deeley (26:01): Yeah. Maleita Olson (26:01): 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, to deal with it in whatever way works for me. And I, I know, uh, when I'm working with parents, one of the... when they're newly diagnosed, one of the things that's the, the biggest challenge is that they have very different ways to handle it. I'll, I'll have... 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. Dr. Geralyn Arango-Deeley (26:28): That, that was on my list of questions when mom and dad or whoever take it differently. Maleita Olson (26:31): (laughs) Take it differently. Absolutely, one parent can go haul in, "I'm going to find every, I... you know, I'm gonna find the right diet, I'm gonna find the right doctor, I'm gonna find..." And they just go all into action mode and then some people freeze, right? Dr. Geralyn Arango-Deeley (26:46): Mm-hmm. Maleita Olson (26:47): And some people avoid. I mean it's, it's, it's stress so just like any stress, you can de- 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- Dr. Geralyn Arango-Deeley (27:01): Mm-hmm. Maleita Olson (27:01): ... into by literally escaping, you know, unfortunately, people just walk away. Dr. Geralyn Arango-Deeley (27:04): Mm-hmm. No. Yes. Marriage just don't always last. Maleita Olson (27:08): You know, people unfortunately say- Dr. Geralyn Arango-Deeley (27:09): Mm-hmm. Maleita Olson (27:09): ... "I can't, you know-" Dr. Geralyn Arango-Deeley (27:11): Yeah, relationships. Maleita Olson (27:12): It might be the right decision for them- Dr. Geralyn Arango-Deeley (27:13): Yeah. Maleita Olson (27:13): ... but they can't care for that child, so they, they ha- have to make that very heart-wrenching decision. But so you have fight, you have flight. But what people also don't realize, there's this also freeze, right? Dr. Geralyn Arango-Deeley (27:23): Mm-hmm. Maleita Olson (27:23): 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- Dr. Geralyn Arango-Deeley (27:34): Mm-hmm. Maleita Olson (27:34): ... other than, "Let me copy what my parents did," or decide to be the polar opposite and some combination thereof, right? (laughs) Dr. Geralyn Arango-Deeley (27:38): Right, right, right. Right. Right. Maleita Olson (27:38): Right? Dr. Geralyn Arango-Deeley (27:38): Yeah. Maleita Olson (27:39): So, um, some 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. Dr. Geralyn Arango-Deeley (27:55): Mm-hmm. Maleita Olson (27:55): And 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 this is difficult for me." Dr. Geralyn Arango-Deeley (28:07): Mm-hmm. Maleita Olson (28:07): That's not selfish. Dr. Geralyn Arango-Deeley (28:08): Yeah. Maleita Olson (28:08): That's human. Dr. Geralyn Arango-Deeley (28:09): Mm-hmm. Maleita Olson (28:10): Uh, you know, it's human to say, "This is difficult. This is hard. This, this is, this is more-" Dr. Geralyn Arango-Deeley (28:16): And it's lon- it's long term, it's- Maleita Olson (28:18): "It's more than I signed up for." Dr. Geralyn Arango-Deeley (28:19): Yeah. Maleita Olson (28:19): And that's what makes it have parallels, like, ch- 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, of a parent with dementia," which is another road you're familiar with. Dr. Geralyn Arango-Deeley (28:35): Mm. Mm-hmm. Yap. Maleita Olson (28:36): And then it's also the journey of someone with chronic illness. If you, you know, if you have a... if you have Parkinson's disease or you have Multiple Sclerosis or something like that- Dr. Geralyn Arango-Deeley (28:45): Yeah. Maleita Olson (28:46): ... it's the... 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. Dr. Geralyn Arango-Deeley (29:01): Okay. Okay. Maleita Olson (29:02): You know, I, I often say to my- myself, like, "I- I'm blessed. I don't have at this moment in my life..." I'm sure someday, day, I know I might- Dr. Geralyn Arango-Deeley (29:09): Mm-hmm. Maleita Olson (29:09): ... might, "but at this moment in life, I don't have any chronic illness that causes pain, but I have relatives that do." Dr. Geralyn Arango-Deeley (29:15): Mm-hmm. Maleita Olson (29:15): 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 was like, "How the hell do you live like that?" Dr. Geralyn Arango-Deeley (29:23): Yeah. I know, yeah. Maleita Olson (29:23): And, and- Dr. Geralyn Arango-Deeley (29:23): Yeah. Maleita Olson (29:28): ... I feel that compassion for other parents that are, you know- Dr. Geralyn Arango-Deeley (29:31): Mm-hmm. Maleita Olson (29:31): ... physically carrying, uh, uh... I've seen 80 pound mothers in their 60s, lifting, you know- Dr. Geralyn Arango-Deeley (29:37): Yeah. Maleita Olson (29:38): ... 150 pound, you know, children- Dr. Geralyn Arango-Deeley (29:39): Yeah. Yeah. Maleita Olson (29:41): ... you know, taking care of them. Dr. Geralyn Arango-Deeley (29:42): So our first stop is to just acknowledge that, "Yeah, uh, sometimes this is just so hard." Maleita Olson (29:49): And you're not supposed to feel guilty for thinking it's hard. That's the piece. Dr. Geralyn Arango-Deeley (29:53): That's the key also. Maleita Olson (29:54): 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. Dr. Geralyn Arango-Deeley (30:08): Right. Maleita Olson (30:08): You didn't set it up that way. It's not hard 'cause you screwed up and your child is this way. Dr. Geralyn Arango-Deeley (30:13): 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 the good cry, you know, but (laughs) what else, you know? Maleita Olson (30:23): Well, I, I think you, you... Well, you have the good cry, right? Dr. Geralyn Arango-Deeley (30:24): You have the good cry. (laughs) Maleita Olson (30:25): You have the good cry and 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. Dr. Geralyn Arango-Deeley (30:37): Mm-hmm. Mm-hmm. Maleita Olson (30:37): You know, if this is, uh, you know, part of what you're saying. I think one of the hardest parts, uh, I just went through this, uh, recently with one of my own children and they're also young adults and I have to be careful 'cause she might listen to this and, and (laughs)- Dr. Geralyn Arango-Deeley (30:52): (laughs) Maleita Olson (30:53): 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." Dr. Geralyn Arango-Deeley (31:23): Mm-hmm. Maleita Olson (31:23): "What hurts you hurts me." Dr. Geralyn Arango-Deeley (31:24): Mm-hmm. Maleita Olson (31:25): 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, I think they don't ever completely leave the nest. They wi- They don't, you know, le- Dr. Geralyn Arango-Deeley (31:38): Not in the same way. Maleita Olson (31:39): Not in the way. And, uh- Dr. Geralyn Arango-Deeley (31:39): I mean, Nic is living here in the condo, and people sort of say, "Oh, it's so great..." I've heard this a couple of times lately, "that he's independent." Maleita Olson (31:49): (laughs) Dr. Geralyn Arango-Deeley (31:49): And it's like, "Oh, okay." (laughs) But then it's like- Maleita Olson (31:51): I don't know about that. Dr. Geralyn Arango-Deeley (31:52): ... you know, or, "You retired from your job, and now you're, you know, getting this freedom." 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 with their 26-year-old child, you know," and 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. Maleita Olson (32:34): Yeah. Yeah. Yeah. Dr. Geralyn Arango-Deeley (32:34): 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. Maleita Olson (32:44): Yeah. And that's... And so, when you say what do you do after you go a good cry? You go, you go and just, you just say... (laughs) 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 outburst, and all those, those other stuff, 'cause 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, and, 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. Um, it is what it is. It's not my fault." Dr. Geralyn Arango-Deeley (33:22): Which is probably something to sort of like have as a mantra, you know, (laughs)- Maleita Olson (33:26): Yes. Dr. Geralyn Arango-Deeley (33:28): ... that you have to continually remind yourself of that. Maleita Olson (33:30): Yes. Dr. Geralyn Arango-Deeley (33:31): And that's where, after I have 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-" Maleita Olson (33:39): Yes. Yes. Dr. Geralyn Arango-Deeley (33:39): You know, and people are... You know, like, you have to kind of, kind of recalibrate a lot- Maleita Olson (33:46): Mm-hmm. Dr. Geralyn Arango-Deeley (33:47): ... you know, where... y- you know, 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, or rarely revisited, but it's a, it's a constant. Maleita Olson (34:00): I, I think what's really important here, and it's interesting 'cause before we started we were chatting, and you mentioned something about when people feel sort of compassion for, for loss, you know, the next sentence often is something... It- it's, it's funny. I, I grew up on ANNIE The Musical. It's like The Sun Will Come Out Tomorrow, right? Dr. Geralyn Arango-Deeley (34:22): Mm-hmm. Maleita Olson (34:22): That's always the next race. So, you know, you lose someone. "I'm sorry for your loss, they're in a better place." (laughs) You know, so it's somehow this happy thing, which can be equally true, right? Dr. Geralyn Arango-Deeley (34:32): Mm-hmm. Maleita Olson (34:32): 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, right, and they pass away, we can say, "Oh, that pain is ending," but that relief doesn't, there's - it's not a wipe-out. It doesn't just wipe out the other pain, (laughs) you know, and it's, it's a big - Dr. Geralyn Arango-Deeley (34:54): (laughs) Mm-hmm. Maleita Olson (34:55): ... they're, 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 the chronic sorrow and the chro- Chronic is a funny word to use but sort of this chronic joy too, you know- Dr. Geralyn Arango-Deeley (35:11): Mm-hmm. Maleita Olson (35:11): ... it's, it's... it was unexpected sorrow, right? You didn't expect, nobody expects to have a child with special needs, nobody goes, you know- Dr. Geralyn Arango-Deeley (35:19): Mm-hmm. Maleita Olson (35:20): ... 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 large, most people don't know what's going to happen until it's upon them- Dr. Geralyn Arango-Deeley (35:31): Yeah. Maleita Olson (35:31): ... and when it's, you know, upon you, whether by choice, which I greatly admire, we have more and more people doing that, which is such a blessing to, to our whole society. Dr. Geralyn Arango-Deeley (35:42): Mm-hmm. Maleita Olson (35:43): And that you, you have to recognize that you're, 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 Nic's mother? Dr. Geralyn Arango-Deeley (36:02): 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 im- I think the importance of the people in your life (laughs), and I divide them up into the people, when you see them, you have to kind of start your story with, "One... 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? (laughs) Maleita Olson (36:40): (laughs) Dr. Geralyn Arango-Deeley (36:40): There's people who are, uh, 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, it's in that, in that area. Maleita Olson (37:20): 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? Dr. Geralyn Arango-Deeley (37:28): Mm. Maleita Olson (37:29): That you have a right to that sorrow- Dr. Geralyn Arango-Deeley (37:30): Okay. Maleita Olson (37:30): ... because you're not alone, right? Dr. Geralyn Arango-Deeley (37:32): Yeah. Yeah. Maleita Olson (37:32): Because the other thing, I mean, that's the isolation has got to be one of the most intense parts of being a special needs parent. Dr. Geralyn Arango-Deeley (37:37): Yes. Maleita Olson (37:38): And so, when you can make those connections and you can have that sense of community, you feel embraced and you feel, uh, one of the, one of the joys, right? One of the joys is having a sense of community that, that- Dr. Geralyn Arango-Deeley (37:49): Mm-hmm. Maleita Olson (37:49): ... you know, and honestly- Dr. Geralyn Arango-Deeley (37:50): Yeah. Maleita Olson (37:50): ... neurotypical parents, I can tell you, it's, it's been hard. I, I have found it so difficult to create community among parents- Dr. Geralyn Arango-Deeley (37:57): Yeah. Yeah. Yeah. Maleita Olson (37:58): ... you know, having raised my kids in the 2000s and, and still... I ha- I still have a middle schooler (laughs) or something, I'm still raising, 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. Dr. Geralyn Arango-Deeley (38:12): Yeah, that's interest- that's interesting because, um, you know, the... one of the first things when I found out Nic was gonna have Down syndrome was I went, uh... I had to go to Barnes and 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." Maleita Olson (38:32): (laughs) Dr. Geralyn Arango-Deeley (38:32): The next town. It was in Springfield. Maleita Olson (38:34): Yeah. Dr. Geralyn Arango-Deeley (38:34): And I went to Hancock Methodist Church and sat down with a whole room full of people, and me 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's 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, Maleita Olson (38:59): (laughs) You're all over. Dr. Geralyn Arango-Deeley (38:59): ... Dr. Geralyn Arango-Deeley (39:00): ... but we get to the Christmas party, we get to Holiday party- Maleita Olson (39:02): (laughs). Dr. Geralyn Arango-Deeley (39:02): You know? Maleita Olson (39:03): You're all over- Dr. Geralyn Arango-Deeley (39:03): All of those things. And everybody is, you know ... There is- there is 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. Maleita Olson (39:14): That's true. Dr. Geralyn Arango-Deeley (39:14): And so ... which is not to be stereotypical, but it's just like yeah. This is just (laughs) I don't know what- It's just different. Um, and there is a lovely camaraderie even with people you don't know very well because we're all- Maleita Olson (39:27): You have this shared experience. Dr. Geralyn Arango-Deeley (39:28): Yeah. Maleita Olson (39:30): Yeah. And that's- And that can be really, really powerful. (39:32): But I think you also ... or what your story just reminded me of is that we sort of go through these stages where it's- it- it- it plateaus. Um, it being sort of this sense of loss can kind of plateau for a- for a time. Dr. Geralyn Arango-Deeley (39:49): Mm-hmm. Maleita Olson (39:50): And we kind of feel little healed. And then, I think sometimes it surprises us when the next stage makes us feel it again. So, for example- Dr. Geralyn Arango-Deeley (39:59): Yeah. Maleita Olson (39:59): You know, it's like, okay, you get to, you know, 14-15, and you finally sort of have school figured out. You s- you hope- Dr. Geralyn Arango-Deeley (40:06): Mm-hmm. Maleita Olson (40:07): ... probably- I know that a lot of people unfortunately don't have that, um, that luxury, but you kind of got it figured out. You kind of know what you're doing. Dr. Geralyn Arango-Deeley (40:14): Mm-hmm. Maleita Olson (40:15): And then, all of a sudden, 14 and 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- Dr. Geralyn Arango-Deeley (40:27): I was going to say, yeah. Maleita Olson (40:28): They enter into "What?" You know? Dr. Geralyn Arango-Deeley (40:28): Who is this? Yeah. Maleita Olson (40:29): But then, you know, for our- our population, that it can mean really serious stuff. Dr. Geralyn Arango-Deeley (40:33): Yes. Maleita Olson (40:33): It can mean being attacked. Dr. Geralyn Arango-Deeley (40:35): Yes. Maleita Olson (40:35): It can mean parents walking out with black and blue eyes. Dr. Geralyn Arango-Deeley (40:37): Yes. Maleita Olson (40:37): It can mean, you know, a lot of things where all of a sudden, it's like, "Oh my gosh, I have- I have to acknowledge that something like that." You know, that's a loss. That's a loss. It's a huge loss to say, "I'm not safe around my chi- my own child." Dr. Geralyn Arango-Deeley (40:52): Yup. Maleita Olson (40:52): My child that I gave birth to- Dr. Geralyn Arango-Deeley (40:53): Mm-hmm. Maleita Olson (40:53): ... is not safe for me to be around. And some families have to even- Dr. Geralyn Arango-Deeley (40:57): Yeah. Maleita Olson (40:57): ... 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- that really heart wrenching choice- Dr. Geralyn Arango-Deeley (41:06): Mm-hmm. Maleita Olson (41:06): ... to have supports, you know, in a- Dr. Geralyn Arango-Deeley (41:08): Yeah. Maleita Olson (41:08): ... different place. And that's a loss, so it's like- Dr. Geralyn Arango-Deeley (41:11): That's a huge ... Maleita Olson (41:12): loss, and so, 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 'cause I'm also, you know, a parent of special needs. I- I just had this happen to me where my- one of my children was going through something. And- 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- Dr. Geralyn Arango-Deeley (41:45): (laughs). Maleita Olson (41:45): ... getting his first apartment. Dr. Geralyn Arango-Deeley (41:46): Uh-huh. Maleita Olson (41:46): And I was just like, "Huhhhh." Dr. Geralyn Arango-Deeley (41:47): Huhhh. Maleita Olson (41:47): (laughs). Dr. Geralyn Arango-Deeley (41:47): (laughs) I heard that sigh coming. Maleita Olson (41:52): (laughs) We did it together. It's like ... it's just like ... Dr. Geralyn Arango-Deeley (41:53): Uh-huh. Maleita Olson (41:53): You know? And you're just like, "Why is this so hard?" You know? And then- Dr. Geralyn Arango-Deeley (41:58): Mm-hmm. Maleita Olson (41:58): And- and- and why can't my child be on that timeline? And why- and why, and why- Dr. Geralyn Arango-Deeley (42:02): Yeah. Yeah. Maleita Olson (42:02): And why and why and why. And- and then, it's just ... and it's to your point. We have the pity party. We say, "It's- it's- it's not fair. I wish it were easier for my kid." And then, you know, and then, you turn around and you- you look at what's right in front of you. I think that's the other- Dr. Geralyn Arango-Deeley (42:16): Mm-hmm. Maleita Olson (42:16): ... question you're asking. It's like what do you do when you get out of the pity party? Well, you look and you- you look for what- what is different that wouldn't have happened if that child wasn't, you know ... I- I use the term- Dr. Geralyn Arango-Deeley (42:29): Yeah. Maleita Olson (42:29): ... wired that way 'cause of the way, you know, my- my son's on the spectrum, or that child wasn't- Dr. Geralyn Arango-Deeley (42:33): Mm-hmm. Maleita Olson (42:34): ... you know, born with those differences. What- what would be different? And- and so, for example, one of the things that went terribly wrong, that person ended up in a- in a position where they're really- that child of mine is now really having an impact where they are. Dr. Geralyn Arango-Deeley (42:48): Mm-hmm. Maleita Olson (42:49): And so, being like, "Wait, they were meant to be here and- and I was just so stuck on the traditional trajectory." Dr. Geralyn Arango-Deeley (42:56): Okay. Maleita Olson (42:56): That if I can let go of that some more, and just embrace where that person is ... And it doesn't matter. Dr. Geralyn Arango-Deeley (43:02): Mm-hmm. Maleita Olson (43:02): Like, as long as that person is on the road to happiness. And I think we have to ... That's another piece. We- we have to be on the road to happiness- Dr. Geralyn Arango-Deeley (43:08): Mm-hmm. Maleita Olson (43:09): With our- ourselves and our kids. Dr. Geralyn Arango-Deeley (43:10): Yeah. Maleita Olson (43:10): Never ... I think we always want our kids to be happy, and every time they're not, that's a whole another topic. My son might need another podcast. Dr. Geralyn Arango-Deeley (43:17): Mm-hmm. Maleita Olson (43:17): (laughs). Dr. Geralyn Arango-Deeley (43:17): But, uh, well, you know what? And that's- that's the truth. To be able to ... I think it takes a lot of- of resolve, but to just sort of say, "Yeah. This is who this person is. And this is who they helped to make me." Maleita Olson (43:33): Yes. Dr. Geralyn Arango-Deeley (43:33): And that's- and like, like, kudos me, you know? Maleita Olson (43:37): Yeah (laughs). Dr. Geralyn Arango-Deeley (43:38): I mean, with all the blame I can lay on myself, and I can do a good job of that, force yourself to say, "You know what? Wow." And- and stay there for a minute. Maleita Olson (43:47): Yes. Dr. Geralyn Arango-Deeley (43:47): It could last as long as, if not longer, than the pity party. Maleita Olson (43:50): Yeah. Dr. Geralyn Arango-Deeley (43:50): And that will be nice too, but maybe let's be a little nicer to ourselves. Maleita Olson (43:55): I- I- I hear this so hard. Dr. Geralyn Arango-Deeley (43:55): Right. Maleita Olson (43:56): It is funny. It reminds me when I'm counseling, I love to- to go back to this story and I still remember it. I remember sitting in a Lamaze class kind of thing, you know? Child- childbirth class. And the nurse who was running it, looking and saying, "You're gonna call it a good day when you get a shower." Dr. Geralyn Arango-Deeley (44:14): (laughs). Maleita Olson (44:15): And I remember just being like, "What?" Dr. Geralyn Arango-Deeley (44:18): Get out of ... Maleita Olson (44:18): "Get out of here!" (laughs) This cannot be true- Dr. Geralyn Arango-Deeley (44:21): (laughs). Maleita Olson (44:21): ... until you're living it, and then, you're like, "Yeah." It's a good day when you get a shower. And- and I think that's- 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- Dr. Geralyn Arango-Deeley (44:37): Hmm. Maleita Olson (44:37): ... 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- that's a whole another, uh, sort of intertwined with individuation, you know? (44:51): But, um, being able to just ... you know, I'm- I'm hearing, um, Elsa in my head, you know? Let it go. Just let it go. Like, let it go and let go all those expectations and- and trying to, um, hold yourself accountable for every little thing. And just embrace what's right in front of you. That kind of mindfulness mindset. Dr. Geralyn Arango-Deeley (45:09): Yeah. Maleita Olson (45:09): You know, it's like- Dr. Geralyn Arango-Deeley (45:09): Mm-hmm. Maleita Olson (45:10): ... what is right here, right now- Dr. Geralyn Arango-Deeley (45:12): Mm-hmm. Maleita Olson (45:12): Where's the miracle in this moment? Um, and it might be sitting beside some pretty crappy stuff. Okay. Dr. Geralyn Arango-Deeley (45:19): Okay. Maleita Olson (45:21): You know, just say, "Okay. It is what it is. There's crap and there's good." But never to get too focused that on either one. You know, like ... 'cause when you ignore the crap, it grows and- Dr. Geralyn Arango-Deeley (45:31): I was going to say. Maleita Olson (45:31): it builds. Dr. Geralyn Arango-Deeley (45:31): It builds. It builds. Yeah. Maleita Olson (45:31): Come back to bite you. Dr. Geralyn Arango-Deeley (45:32): Mm-hmm. Maleita Olson (45:32): Yeah. Dr. Geralyn Arango-Deeley (45:34): Mm-hmm. We must be a little nicer to ourselves. Maleita Olson (45:36): Yeah. Dr. Geralyn Arango-Deeley (45:36): Huh? Maleita Olson (45:36): Absolutely. Dr. Geralyn Arango-Deeley (45:37): 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? Maleita Olson (46:03): Could I interject one more thing as you close? Dr. Geralyn Arango-Deeley (46:05): Yeah baby... Maleita Olson (46:05): (laughs) I- I have this slide. I- I do this ... used to do this workshop called next steps into adulthood. Dr. Geralyn Arango-Deeley (46:13): Mm-hmm. Maleita Olson (46:13): And very blessed to have 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 this service cliff at 21? Blah blah blah." And there's this amazing slide. And I don't know the origin of the quote, so 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." Dr. Geralyn Arango-Deeley (46:48): Ooh. Maleita Olson (46:50): And when you're done with that ... basically leave your- leave your grief over here, and you know, and we'll- and we'll go. Dr. Geralyn Arango-Deeley (46:57): Let's all keep going. Maleita Olson (46:58): Let's all keep going, you know? Dr. Geralyn Arango-Deeley (46:59): Yeah. Maleita Olson (46:59): And- 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. Dr. Geralyn Arango-Deeley (47:05): Mm-hmm. Maleita Olson (47:06): That's who- that's what you are mourning. Dr. Geralyn Arango-Deeley (47:07): Mm-hmm. Maleita Olson (47:07): 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. Dr. Geralyn Arango-Deeley (47:14): Okay. Maleita Olson (47:14): It's not a one time letting go. Dr. Geralyn Arango-Deeley (47:16): Mm-hmm. Maleita Olson (47:16): It's, uh- it's- uh- Dr. Geralyn Arango-Deeley (47:18): It's ongoing. Maleita Olson (47:18): It's ongoing. I- I think of it kind of- Dr. Geralyn Arango-Deeley (47:20): It's chronic letting go (laughs). Maleita Olson (47:21): It's chronic letting go. And I think of it kind of like a slinky? You know, there's- Dr. Geralyn Arango-Deeley (47:25): Mm-hmm. Maleita Olson (47:25): The slinky. And it's- it's a spiral. So, it's- you're- you're cycling. So, you-you're getting better and you are improving, but you're cycling. You know what I mean? You're- you're- Dr. Geralyn Arango-Deeley (47:33): Okay. Maleita Olson (47:33): ... getting- you're coming- Dr. Geralyn Arango-Deeley (47:33): Yeah. Maleita Olson (47:34): If you're holding it vertical, you're- you're on your way up- Dr. Geralyn Arango-Deeley (47:36): Mm-hmm. Maleita Olson (47:37): ... but you're gonna cycle through. Dr. Geralyn Arango-Deeley (47:40): All right. All right. Well, I hope that that even that image can give us- gives 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? (47:54): So, listeners, thank you so much for spending time with us on today's episode with Maleita 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 for more stories of people like you and me, and our loved one with a disability on Our Parallel Paths. You're not alone. I'll see you next time.