The Special Needs Mom Podcast
The Special Needs Mom Podcast
Unsupportive Support Groups: Why Some Support Groups Leave You Worse Off Than You Started
Ever walked into a support group expecting connection and left feeling… not so supported? You’re not alone. This episode is all about navigating support groups that don’t quite meet our needs and how to find, or even create, the spaces that truly support us.
I share my first (not-so-great) support group experience, the different types of people you might encounter in these spaces, and why mismatched expectations can make things feel off. But don’t worry, this isn’t just a gripe session—I also give you actionable steps to help you find (or build) the support you need.
And if you’ve ever felt like there has to be a better way, you’re right! Let’s explore how to create meaningful, truly supportive communities together.
Resources Mentioned:
🎧 The Telepathy Tapes Podcast – A fascinating listen on telepathy in non-speaking autistic individuals.
📖 Happiness Falls – A novel featuring a character who communicates through spelling.
💙 We Are Brave Together – A fantastic organization offering support groups for special needs moms.
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Connect with Kara, host of The Special Needs Mom Podcast:
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Website: https://www.kararyska.com/
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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.
Hello and welcome to the special needs mom podcast. So my latest confession is I am obsessed with the telepathy tapes podcast. I think this is going to be a little bit familiar to some of you because I'm not always like, you know, the most, on trends, but one of the lovely moms in the pathway to peace community mentioned it. She had. Become obsessed. So I gave it a go and it is just a real fun listen. And if you're familiar, then obviously you know exactly why, but if you're unfamiliar with this particular podcast, as the title suggests, it's about telepathy. But specifically telepathy among or exhibited in non speaking autistic adults and children. So in my opinion, the podcast is super well done. Part of me as I'm listening is like, Oh, wow, I should really step up my production. But also I think Don't have their budget. So it's fine. And I love it because I would say it's kind of mind bending to listen to this podcast. therefore got like this entertainment factor. It definitely stretches what we, most of us have always thought to be like factual, to be reality. And ironically, I I just had finished a novel called Happiness Falls. It's fictional. Obviously it's a novel. it's about a boy with autism and Angelman syndrome, and he is what's called a speller. Again, some of you might be already very well acquainted with, with this term, but it's essentially people that communicate through spelling, through the use of a keyboard or a, letter board or anything of that nature. So for me, both cases, both the fictional novel and the podcast has parents, like in either story, either a made up story or in the actual interviewed life of people, you know, they're talking about the exhaustion, the advocacy, the experience of trying for so many years for so hard, and then maybe even giving up or closing a chapter. I really enjoy, cause I'm like, these are my people. These are the people that understand the nuances of our lives. So I feel a kindredness to them and also an inspiration of like, wow, like what is possible that We always thought wasn't so it's it's got all the things so go ahead and check it out And you know, it feels good to have our people out there Which brings us to the topic of the day the topic of the day is What I'm calling unsupportive support groups. Now I want you to take away something. I don't want to just gripe about unsupportive support groups here. That's not what we're about. I want you to take from this podcast, from this episode, that Not all places of community are the same and just because one doesn't fit or maybe even just because one is like Really a negative experience Doesn't mean that What you want to need isn't out there or maybe I should better say that Doesn't mean that you can't get what you need because actually maybe it's not out there. Maybe You're going to have to build it. I know. I know. Sometimes we don't love that answer because it's like, I don't know, Kara, did you notice that I'm kind of already busy? I'm already at capacity. I don't know if I have that. but we don't have to worry about that right now. What's first? Take a closer look at this topic and, you know, clearly like this space that I am looking to create through the Special Needs Mom podcast is all about community and support. And it's my mission for you to be supported and connected to community. Why? Because if we have a motto. Say it with me together is the only way I actually wore that shirt today. So actually you don't know what I'm talking about. I act like we like our best friends and we know what's happening, but I have a shirt. It says together is the only way on it. And I made this t shirt. because of something that somebody said to me when I was in a significant time of need that was just so encouraging, So I made a t shirt, I wear it, I wore it today and the person I had, you know, been meeting with, mentioned, Oh, I like your shirt. And so I didn't really want to go into the part like, Oh yeah, my son has a brain tumor and this and that. Like, I don't always want to go into that, but I, you know, lightly, like lightly entered into the conversation. she was lovely and, you know, we got to connect more as humans than strangers. So that's kind of a tangent. Let's get back to that. What we're talking about. I want to go back to my first recollection of my very first support group, and I haven't thought of this memory in years, but of course, given the topic. It came to my mind. So I don't know exactly how long ago this was. I think it had to have been when I had my third son, maybe. I don't know. So that would be maybe like 13 years ago, Not quite that long ago. Probably 10 years ago. So the support group somehow heard of it. I don't remember how, but it was in a store. I think it was called babies in bloom, which is like a really cute baby and child's boutique. So I found myself in this room with these ladies and from my recollection. I think there were like three or four other moms, so it wasn't a super big group and I'm just kind of feeling it out. I generally am a more quiet person. when I first meet people, I'm not necessarily very boisterous and maybe a little bit more reserved. So kind of probably sorting it out there. And what I learned is that all of these moms had children with autism. And I also kind of gathered that all of these moms. Already knew each other a little bit. So given that at that time. my son was not diagnosed with autism and didn't really have, a similar experience to the experience that those kids were having or the parents were having. I ended up not relating to them at all because at that time our experience was much more heavily medical than it was behavioral or social or emotional. Really we were having in the medical there for a while. And still are. But anyhow, did not feel connected. I left thinking that was not very helpful, probably even more so I felt a little yucky because I don't remember the specifics, but I do remember the vibe felt a little bit like we're going to go Talk about all the things that suck and the hard things. And I guess the word that comes to my mind is like complain about everything. And that just did not feel helpful to me. I obviously felt like, wow, this, this was like a head scratcher. Like I did not like that experience. So I took a break. I took a long, many, maybe five or six or 10 years break from seeking out any sort of support, maybe not that long, but you get the point. It took a long break. I decided, all right, that was enough about that. That doesn't work. Let's move on. And my guess is that you have maybe a similar ish experience that you've gone seeking support. You've gone somewhere, whether it be virtual or in person, and you didn't quite get what you needed. And so I wanted to have a conversation about this kind of just putting words to some of the experiences you may have had or even might be having in service of looking at how to create what we need. So we're going to look at both sides. I'm not going to just leave you hanging and here's why some support groups suck, but we're not going to do that. But we are going to take a look at both sides. What are some of the reasons that you might find support groups unsupportive? So the first one and I kind of started with naming personas, I did not continue with the theme But what we're starting with is what I'm calling the fixers. This could also be called toxic positivity so This happens everywhere, not just in support groups, but some people are not able to be with other people's hard or big emotions. It is beyond their comfort zone. So in an attempt to make themselves feel better, they try to fix and, or Otherwise, make your pain all better. So this could look like them giving you a nice little, one liner of if everything's going to be okay, or this could look like a lot of different things. This could look like them jumping into, but have you tried this, trying to actually fix whatever challenge you're sharing? So this ultimately Results in you being, probably, unvalidated and quieted and altogether feeling like you were not heard or held or anything that you needed or wanted. So the fixers, and I say this with a lot of compassion for the fixers because they're not trying to be jerks. They, like I said, just have a capacity for being with other people's emotions. So it's something to watch out for, something that happens. The next group is what I'm calling the experts or the loud ones. So this is actually probably two groups, but another area where we have experts where, you know, rather than holding you in this the way that you wanted to be supported, you have people. who are experts, like air quote experts, like that. They just know the answers for everything. And they're going to tell you about what they think. So also doesn't feel very good. Again, this could probably be third one, but the loud one. So this also could be people that, maybe are not sharing the air in a way that allows the group to be participating. It's really more of a one or two people participating. So that also is not, conducive to actually having a community experience and when we don't share the air or when other people don't share the air It just gets kind of wonky. So I'm sure you know what I'm talking about. I think also an aspect here is that Sometimes when people are moms are coming to support groups. They maybe are a first timer haven't done it They have been bottling up all their thoughts and feelings and emotions for Who knows how long, and so it kind of all comes out at once. And so we're not going to like make these people really wrong for this. We're not going to, you know, say, Oh yeah, those people, they just don't know how to share. We're going to look at that with compassion and say, this is just something that happens. And a lot of this podcast, we're going to look at kind of like, what do we do about this? So next group of people, I guess I just kind of mentioned it is the dumpers. So these are the people that maybe. Just have so much built up that it's just all coming out and it can be a lot to be with Especially if it just maybe is like, okay I just asked how you are and then you talk for 25 minutes about Everything so we're gonna call that group of people or that experience you can have with people The dumpers. So the next kind of area to look at is emotional capacity limits. So think about this. Each of us is carrying a tremendous emotional load, tremendous grief. So as we move towards community and being with other people. We have a lot to be with and so In some cases, that is going to impact you. So in some cases, it can be very empowering to hear other moms stories of strife and struggle and success. In other cases, it might add too much to what you're already holding. So, This one, the emotional capacity limits is really not, a right wrong of, you know, this is something to be fixed. It's really something to notice that what you need may not be available in that way in terms of that support group, because you may just be really, really sensitive and not able to not take on other people's challenges or experiences or emotions. there's a way of being that have, you know, as a coach, I've practiced where I can be with people's emotions, but not take them on as my own. And you know, it's a skill to be developed and for whatever reason that may not work for you. So something to really honor and acknowledge. Now, another area that can really create some challenge when it relates to support groups is mismatched expectations. Here's what I've noticed is that some support groups focus on tactical and applicable support for your child. And some support groups focus on supporting the caregiver. And I'm sure many, many more, but I'm, I'm just kind of isolating these two for the sake of this example. Now imagine, and I've had this experience, you go to a support group thinking. You're looking for support as a caregiver and the entirety of the conversation is focused on tactical and practical support for your child. Not super supportive. It's actually maybe even frustrating because it's like, no, actually that's what I, that's what I need support. I need a break. I need a break from that. Like I spend my whole day doing that. Like I need a little bit for me. So mismatched expectations can be a sure way of not having a support group be supportive for what you're looking for. Obviously. I think there's a place for both of these groups. They're incredible. I think of our own like tumor community, Facebook group, and it's more Tactical and applicable, super helpful, but only because it's a tool that I know how to appropriately use and not expect it to be something that it is not. And the last one to point out, and again, this is happens all over, but it happens in support groups is where you have the experience of feeling judged or having unsolicited advice. So, and you know what, here's the thing I want to call this out is that I think that I am guilty of probably giving unsolicited advice. I think all of us might be. I think when we have something that we think might help another mom, we want to jam it down our throat. Just kidding. We want to share it. And so let's not be hard on ourselves for this. Let's just notice this and perhaps learn to ask for. consent of just a simple question of, Hey, are you open to some advice in this area before we just let it come out of our mouths? Okay. So those are some of the reasons why. We can find support groups to be unsupportive. Not obviously a comprehensive list, but I think kind of the big Themes and the basics of it. Now you might be thinking at this point. You're right Kara. I've experienced all those and so should we just give up now? And the answer, I'm sure you see it coming is no, let's not give up now before we move on to kind of looking at what some of our options are to create what we need. I wanted to take a quick little moment define what is support, like what are we even talking about? So if a support group is supposed to do something specific such as support, what is that? And what I would like to paint the picture of is that support refers to the emotional, practical, and psychological assistance that helps you feel understood, encouraged, and less alone in your experiences. So, That can include emotional validation, empathy and understanding, like connecting with people that really get it, that really can hold you and you're like, yeah, I don't have to even explain it. You understand me. It can be encouragement and reassurance, practical guidance. So there is that piece of like, I actually want some expertise or wisdom here. And of course, a sense of belonging. Like I said earlier about, you know, the, the novel and the telepathy tapes, podcasts are like, these are my people, places where you feel safe, accepted, and valued. So that's what, when I talk about supportive support groups or support period, that's what I'm talking about. And so being a little bit more clear now on the, what, let's take a peek over to the And look at the how. So again, not a conclusive list, but three areas that I would have you consider in getting what you want from a support group or in other ways, having supportive support group. Firstly, it's going to be getting clear on the intention. of the support group. So the example I would give you is ask, and so I actually did go to a support group for a brain tumor, community that I'm part of. And this particular community is more research based. Great group. Love the group. And so I went to, they were offering a support group and I thought, you know what, I'm all about it. Let's give this a go. I didn't ask any questions and I got there and it wasn't very supportive is the bottom line I think because I had not gotten clear on the intention of the support group. Going back to what I said earlier is some support groups are aiming to support a caregiver And some are more tactical practical of how do we give resources and solutions for this problem. And so what I would do if I were to approach that experience again is I would ask, I would reach out and I would say, Hey, I'm thinking about joining the support group that's coming up. I wanted to get an idea of what to expect and how the group is facilitated. Given that this is a support group for parents for brain tumors is the focus of the support for parents. Or caregivers or patients. And so that would just create a conversation on kind of what to bring in terms of expectations and also decide if, if you actually still want to go, right? Because if in my situation, if if I had known that it was more tactical, practical, I would probably not have joined. That particular meeting wasn't what I was looking for. So get clear on the intention is the first step. Secondly is look for a strong facilitator and make requests for what you need. So if you go back to the list of kind of places where support groups go wrong or wonky. You would recognize that it's almost like there's no, order or container is a better word for the group. There's no one guiding the group. And so when I say look for a strong facilitator, what I mean is somebody that can help, first lay a foundation for what to expect in the group. So laying a foundation for really kind of, if this is the case of the group is, you know, kind of getting an agreement for confidentiality. of what we do with the information we have in this group and kind of how we hold each other. laying a foundation for, you know, how and when we'll give advice. If we give advice, or asking for people not to give advice unless solicited, A strong facilitator will be able to, you know, facilitate and help people share the air and help, perhaps amplify quieter voices and help louder voices take breaks or make space for other people. so that's going to be huge and looking for a facilitator that is able to create the space that you need. So when I say and make requests for what you need, that's where you can actually make requests of the facilitator and saying, Hey, I tend to be a little bit more quiet and I actually just want to listen. I don't want to share necessarily, this first time around. And so I just would ask that you would honor that and give me a little bit of space, something like that. I mean, everybody is so uniquely different that might not be you at all. You might be like, actually, I need you to help me shut up a little bit. okay. So the last point in terms of helping you see ways to generate the supportive community that you. want is to learn to ask for what you need. And this can be, of course, in a group, but this can be everywhere in the world. And it could look something like before you share, right? So let's say everyone's gone around, we're all sharing, you know, this and that. And you could say, I really would like to share, but my request is that you do not offer any feedback or solutions to my challenge that I, I will let you know when I need that. But right now I just want to be. understood. I want to be validated. I want to have people just know my story. So you don't have to articulate it, you know, in that exact way, but knowing what you need or what you don't need ahead of time and asking for it can be a very, supportive way. You like what I did there? Supportive way to get the support that you need. I couldn't help myself. I'm sorry, guys. Okay. So, I'm kind of geeking out in this actually. So as I was preparing for this podcast, I was like, man, like I kind of want to now offer like a facilitator training for support groups. I don't always talk about it, but my coach training and my coaching had a major emphasis in leadership. So it's essentially like leadership training design so that I could as a coach work with And so I really start to geek out in this area. And so I hope you'll take the kind of the two different lists, right? The experiences that you, might be having, it's not great and just let it be what you notice. Hey, this, this is not what I want or need and use that. And the three points that I've given you to consider that you will be able to create what you need. And I wanted to give you two kinds of places to look, in terms of like starting, if you are like, okay. Okay. Cara, like I'm into your idea. Like I like this idea of support. where do I go? Well the organization we are brave together is one I'm a part of. I adore I speak at retreats through this organization. So, look for the emails on that. It is more local based, but they do have virtual support groups. So that would be accessible to every one of you. And so what you'll need to do is just Google. We are brave together. We'll put a link in the show notes to make it real easy for you, but that is in my experience. they train their facilitators. And really hold, a sacred space for moms like us and are a hundred percent aligned with everything that we've talked about today in terms of like what works in terms of support. and then. I think I'd be remiss if I didn't mention my own coaching community. So pathway to peace coaching community is what I've renamed it to from coaching program because it's not about going through a program. It's about being with people. It's about the community. It's about creating that space where we get to hold one another and we actively engage What do you want? What do you need? And then how will you generate it? And that can be tactical, practical, but it also very much is really looking at who you have to be to generate what you want to need, even with the very real challenges that we face as special needs moms. So to get more information on Pathway to Peace, you can find the information in the show notes of this episode and most every episode. So go click away and just. Check it out. That's all I ask. Okay. Well, we're going to land there and very much enjoy this conversation. Feel free to use the text feature of my podcast. And you can actually text me, text the show, say hi, let me know what you took from the episode, even just say hi. Like, honestly, it makes me feel so good to have somebody talk back to me. Cause I mean, you guys, you know, I'm sure in your head, you're talking back to me, but I don't get to hear that. And so I would love to know what you appreciate about the show, or if you have an idea that can make it better, that can make it even more rich for you. I would love to hear it. So with that, we will see you on the next episode.