Feeling Like An Outsider In Your Own Community

Why do we find ourselves on the fringe? Why do we find ourselves alone even though we so deeply want to belong? In this episode we look at why we feel isolated inside the diagnoses communities of our kids. I share my personal experience with my family at Oncology & Kids Camp (OAK) this last weekend and why this was our only our first year here, even though Levi's first tumor was 13 years ago. Opting into a community can bring connection, support, and a sense of belonging, even when your experience feels so different than others. 

Connect with Oncology & Kids Camp (OAK):
https://oncologyandkids.org/

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Connect with Kara, host of The Special Needs Mom Podcast:
Instagram: https://www.instagram.com/thespecialneedsmompodcast/
Website: https://www.kararyska.com/

Transcript

Speaker: 0:05

Hi, I'm Kara, life coach, wife and mom to four incredible and unique children. It wasn't all that long ago that my son received a diagnosis that had my world come crashing down. I lacked the ability to see past the circumstances, which felt impossible. And the dreams I once had for my life and family felt destroyed. Fast forward past many years of surviving and not at all thriving, and you'll see a mom who trusts that she can handle anything that comes her way and has access to the power and confidence that once felt so lacking. I created the special needs mom podcast to create connection and community with moms who find themselves feeling trapped and with no one who really understands. My intention is to spark the flair of possibility. In your own life and rekindle your ability to dream. This isn't a podcast about your special needs child. This is a podcast about you. If you are a mom who feels anxious, alone, or stuck, then you are in the right place. Welcome.

kara-ryska_4_08-25-2024_165303: 1:14

Hello and welcome to the special needs mom podcast. I am recording this episode as I am freshly back from a very special weekend, which was a family camp experience with an organization called Oak, which stands for oncology and kids. One of the really big highlights for me was getting to meet the angel of a human being who It was my son's camp counselor for the experience for the resident oncology camp. And his name is Tall Toes, which is clearly a camp name at its finest. And to meet the person that was not just like caring for the, needs of Levi, but actually caring for him as a human being was just really impactful. And he was just really, really a special person. So that was a really big highlight to me. And this organization it's new to us, like I mentioned, and, it sends patients that are going through cancer or have gone through cancer to camp and Levi got to attend for the first time this year, even though we have been on the cancer train for 13 years and yet are newly connected to the oncology community. And I'm going to be talking a lot more about that. So actually let me start by backing up a little bit. Firstly, you might be like, wait, I'm getting a little confused because I thought I was listening to the special needs mom podcast, not moms who have kids with cancer podcast. A little bit of background on our personal story and how cancer and disability intersect And this will also nicely queue up the conversation we're going to have today. So let's, you know, zoom back in time, 13 years back in 2011, Levi, who is my now 15 year old, was a completely typical little boy, just two years behind his older brother. He was four and his, he was actually soon to be a. Big brother, as I was expecting my third son. And then of course there is this conversation in the hospital that changed everything for us. And all of a sudden we had a two year old with a massive brain tumor. We had a surgery and while the resection was considered successful, we left the hospital significantly impacted by this tumor and the surgery. So we ended up with a long list of diagnoses and, some of them to include visual impairment, lifelong and life critical hormonal conditions, left sided hemiplegia, which creates course mobility challenges. After surgery, he completely lost his ability to walk and to use his left arm and leg, and then the things that have really evolved over time that we didn't really fully comprehend when he was two really was to the extent of the impact to his frontal lobe. That Of course, has all the things to do with executive function, behaviors, impulsivity, and of course, learning challenges. New on the list this year is a diagnosis of autism. So why are we just getting connected to the cancer community? Like I said, we have been there 13 years where there's a little bit of nuance. It's this. A particular tumor 13 years ago was kind of a loner. The cellular makeup has it considered benign, but as you can tell from the long list above, the impacts are not at all benign, and this is very common with this particular tumor. So surgery and radiation are the only option because of this uniqueness of the tumor. And so we were kind of like this loner in the cancer community. Like we didn't fully fit the experience that many of the pediatric cancer patients and families were experiencing. So I mean, like we had an oncologist, but it was just different. Fast forward to 2021. We had one of those conversations again that changed the course of your life where we learned that Levi had his tumors had returned. And you know, we were right at the 10 year mark, right at the mark where we're like kind of feeling like we were home free. So we found this out and we were, you know, in for a round two in all of its glory. Only this time, 10 years later, it was a little different. Like the people, I don't know who these people are, but the people who classify these things officially classify this tumor as cancer. So we had a very different experience in terms of the departments who we kind of were primarily followed by and supported by, and we had a doctor change, actually our primary oncologist left the organization. So we were kind of umbrellaed into the regular oncology hematology department. We were now part of both the cancer community and the disability community. And yes, there are actually many people who happen to find themselves in both because it's not all that uncommon to have a primary diagnosis, such as cancer that leads to a secondary diagnosis that would be disabling to some degree. But I have found it particularly fascinating to see how both communities operate with the uniquenesses and the cultures that exist in one and maybe not the other, or what's common among both of them. And in particular, it makes me aware. Of my own nature and struggle and desire to belong and yet struggle a little bit and wonder where we fit. At times I have found myself feeling like we didn't fit well enough into the cancer club. So years actually, we went and didn't really identify or associate with the, what I'll call the cancer community. And you know, I had all these reasons. in my head for why that was the case or why we didn't really fit, I should say. And at times I find myself having similar type conversations in the special needs community. For me, sometimes it relates to my son having an average IQ. And it just has me feel different because most, most, not all, I mean, this is I'm making gross generalizations. Most of my friends in the disability community have a diagnosis that impacts developmental and creates a developmental delay. So again, we're just a little bit different. And why am I telling you all this? Well, my guess is that you can relate. That you're like, yeah, I feel for whatever reason, different. Or maybe it's just that you still find yourself feeling alone, even though you technically know people that kind of have things like you do. Perhaps your child's on the autism spectrum, but something about them has them question if you really belong here. Like maybe they're a little bit more social or verbal than others. And so you wonder, like, are we still welcome here? Are we enough of whatever the thing is to be here? Maybe your child has like minimally impacting developmental disabilities. And what I mean by that is like, perhaps their life looks more typical than it looks like somebody who has a traditional developmental delay. And maybe they never have to go to the hospital and have very few doctor's appointments. And you hear all the other people talking about that all the time. And you ask yourself, do I really belong here or this one gets me a lot. You find yourself part of a specific diagnostic community and yet your child's affected differently in a different way. So you question. Do I really belong here? Can they really understand? And I'll share just a little bit here more to, give an example. So my son has this particular tumor, it's called craniopharyngioma and many people, not all, many people are impacted. in the same ways that he is most commonly are the, hormonal, differences, visual impairment, and then all that comes with that very few and actually haven't met anybody that has the physical impact as in the hemiplegia. So most of the people in his tumor community are not physically disabled. And so I find myself feeling other. Feeling different. And so perhaps in your diagnostic community, if you have one, there's something about you and, or you're probably more likely your child that just feels a little bit different. So jumping back to this past weekend experience that I started off with, I was meeting all sorts of new people and sharing our story and sharing a lot about like why we were 13 years in and just now jumping in, jumping in with like, You know, all of our feet. And so I kept telling the story of like how things evolved and you know, how like originally we didn't really, you know, identify as fully cancer. and of course talked about the change over time. So you see, I didn't feel like I fully belonged to these communities and I'm sad. Like I'm bummed out that like, because I had these made up rules in my mind that my kids didn't get to participate in the experiences that they have access to since we opted in. And I didn't mention it earlier, but actually a huge part of this organization is having what's called sibs, which is sibling camp. And I'm so happy that one of my sons chose to go. He loved it. And so, I'm so thankful for what we have now. Also, you know, like I mentioned, a little bit bummed that we missed out on some years of access to that. And that's why I'm bringing this conversation to us today. It's the thing I want to dive into and really the, the heart behind this is the desire to belong, the desire to be known. The desire to not feel alone. And this is the thing that I hear from you all most is that that's what you want. But yet we don't have it. So today we're going to talk about. Why, why do we find ourselves on the fringe? Why do we find ourselves alone, feeling alone, even though we so deeply want to belong? So let's start with looking at the why, and just looking at what might be creating or I think what I'll suggest is creating our experience. If I asked you the question, what's in the way? A feeling like you fully belong. Your first answer might be pointing back to some factor in your life or maybe in your child's particular presentation that you contribute to the reason for your lack of belonging. So it could look something like this. My child's improved so much that they don't really struggle the way they used to. Or, there are so many kids or parents that have it worse than us, or our life looks kind of normal. And I know that's not common. Could be. My child will go on to live a typical or what looks like more of a typical independent life. It could be your child's more medically impacted and not developmentally impacted. It could be. But you don't actually have a diagnosis, so you don't even know where you're supposed to belong in some ways. Or on the other side, you have so many diagnoses or such a unique diagnosis that you're a unicorn and truly are one of a kind or like a three of a kind, let's say that. It's something like a thought when. They, the community, have blank, whatever the difference is, and others don't, we're different. I'll try that again. It could be any aspect of feeling different. Like the example I showed earlier where, you know, we have a little different impact from the tumor, even though we all have the actual, you know, experience of having the tumor. Let's slow this down a little bit. We're going to just go in slow motion to really break down what's happening. It's actually so simple. It's so easy to miss, and if I didn't mention the reasons you find yourself feeling this way, then perhaps let me know what I missed. Let me know what has you feeling so much like you don't belong or alone in the journey. Okay, so I'm gonna roll it out here. It's so simple. There's actually none of these factors. That give us the experience of not belonging. Or feeling like an outsider has nothing to do with the facts and the figures that has us belonging in our belonging, like the actual diagnosis is. It's the belief that these diagnosis is matter to be able to belong. So again, that's like so, similar. It might be hard to catch the distinction. the difference of what I'm suggesting, And using the example earlier about how my son happens to have, an addition of diagnoses beyond what his tumor community has. It's me just dropping the drama about like, well, maybe we don't fully fit in and actually really deciding that this is where we fit in, that they will understand us. It's filling our minds with different thoughts. So it's not the sameness that makes us belong. It's, it's believing and thinking thoughts like this over and over again. She understands me or they understand me as in talking about a different community or like a, you know, a body of people. They understand how hard this is. She understands how scary it is to be a mom to a child who is so vulnerable. And whether that's socially, physically, medically, the experience of being a mom and having this vulnerability is actually quite similar. It doesn't necessarily matter if it's because of a medical diagnosis or a neurological diagnosis. We're vulnerable period. We feel vulnerable, I should say. And so it's choosing. To identify as part of the community, it's opting in cause you want to be there. I was really shocked this weekend, actually, as I met various people and, you know, had different conversations, I would ask at some point, like, Oh, Hey, what, how'd you get involved or how'd you get started? And I mean, there's people that have been part of this organization for like, I think the 26 years, I think was the longest, but it's like 10 years, 26 years, 12 years. It's actually incredible. And the reason surprised me, I expected a little bit of a sameness. I expected that they would all be like, Oh, my brother had cancer or my friend or daughter had cancer, that it would actually be that the cancer was the thing that united them. But it wasn't that at all. It was that their friend invited them and they wanted to help. They had something to give. But they fell in love with having an impact on these kids and families. And so they opted in. So there was like a variety of people, there was software salespeople and nurses and teachers and just like regular people who jumped inside of this very cancer focused community and kept stepping up and offered the gifts that they have to bring. It was awesome. So they opted in because they wanted to, because they saw a place for themselves. Inside this community, they saw how they could serve, how they could give and fit in and to make a place to bring their gifts and leave an impact and be. impacted themselves by the gifts of others and the spirit of these kids who are living this really hard life. So let's jump into your life. There's so many different kind of what I'll call community hubs, school communities, medical communities, family communities, friend groups. Sports groups and whether that's through your kid stuff or through your own personal stuff, like we could go on and on. There's so many hubs, and when you think about whatever place you feel you don't fully fit in or belong and wonder for a second what it would be like if you opted in just because you wanted to be in just because you wanted to not feel alone. What would it be like if you didn't feel like an outsider anymore? If you didn't consider yourself a fringe member, how might you show up differently? Like, if you think about it, if you picture yourself like belonging a hundred percent, like being like, I could be president of this organization because I believe I belong so hard and this community wouldn't be the same without me. How would you show up? And so just like, let that settle in as you go about your life and notice when you feel that aloneness, when you feel like you just don't fit in or you want to fit in, but you don't know how and just get a little curious and observe those thoughts that you might have that are those contributing factors to why you are experiencing this lack of belonging. All right, so curiosity and kindness, those will be the lead and just wonder and observe why. You might be having a similar experience. All right. Well, it wouldn't be right if I didn't mention a community that is entirely opt in able, I should say, able to be opted into, it's proper English. And I have mentioned it a little bit on the podcast, but it's also new. I'm going to mention it a lot more in the future. And today, obviously we're doing it right now. So I've pivoted the Pathway to Peace group coaching program to Pathway to Peace coaching community. It was a subtle change. I know. Right. So we went from coaching program where it's like a little bit more time based and more content based to being much more community based. You see what I did there? Okay. So. It's a place where you actually literally do opt in. You like sign up and then you get to benefit from the community and not to be forgotten, the community gets to benefit from you being alongside each other. Who deeply understand the experience of being a special needs mom. So those struggles and the, and the joys. And here's the thing, here's a, it is called a coaching community. I, I was like, ah, I would love to have it just be a shorter name. But I think it's important to recognize this is not just a community. We're gonna be like, let's all come to complain together. We're not doing that. It's a coaching community because we're committed to doing the work to reach for more. more than just surviving. That's what this community is committed to doing. So if you're like, Oh, it sounds like something I might want to opt into, click away, go and find the show notes, sign up for a conversation for me. This is a paid community. But what I will add is I have worked so hard to make it as accessible as possible financially because I know y'all have a million things you could be spending your dollars on and special needs parenting isn't cheap. I used to make a joke about like, cancer's not cheap. It wasn't very funny. But. I mean, it made me laugh still. It still kind of does anyhow, but you get the idea. My heart is to have you in if you want to. And so let's have a chat about it and I hope to see you there. Okay. With that, I will see you on the next episode.