A Grieved Community

In this episode, I share my concern over the rising division within our special needs community. Recently, I’ve observed two sides clashing—each convinced the other is wrong. This division started with a comment made by the Secretary of Health and Human Services about autism, but what’s more troubling to me is how we’re responding as a community. I’ve seen judgment replacing empathy, and I’m left wondering how we got here.

There’s a lot more to explore, but for now, I want to remind you, together is the only way!

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

Join the Community:
Pathway to Peace Coaching Community is currently open for enrollment. Instantly get access to authentic community and weekly coaching! Give yourself the gift of growing alongside moms who deeply understand you and will be with you in your joys and sorrows. --------> Learn More HERE

Transcript

Kara: 0:05

Hi, I am 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 flare 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. Today's episode is, I don't know, I guess it has a little bit of a more somber tone and maybe somber is not the right word, but I wanted to bring a topic that is just deeply on my heart, and I think it will really be a thought provoking conversation. It's intended to be, Something to have us as a community care for one another, better care for one another better. I often really observe what's happening in our community. I don't know, I'm kind of a geek and I like to look at kind of trends and patterns and I just, I don't know. I just do a lot of observation and our community meaning. This big collection of anybody who identifies as a special needs mom or disability mom, somebody who parents a child with any type of disability, medical, neurodivergent, physical, mental, or of course, all the combinations of these factors. one of the things that I love about that is that there's a ton of diversity. And diversity gives us different perspectives and I strongly believe, I strongly believe that when we love somebody who is different from ourselves, especially in ways that we maybe have like a hard time being with that it changes the way that we fully like love ourselves. Like if you can be with somebody, somebody that you kind of are like, wow, like, I don't even like that part of them. But if you love them, imagine just how that, that actually changes how you love period. And so, as the title of this episode suggests, I am deeply grieved because of what I've seen very recently, and for those of you who pay attention to social media. There has been a recent surge of posting from what all describe as two opposing sides of the disability community. If you know exactly what I'm talking about. Good. I don't need to explain anymore if you're a little confused. Actually, that's okay. The details here actually don't matter. I'm not going to go into the specifics because I'm not actually talking about the topic itself, but rather how we as a community are responding to the topic. I am gonna simplify the topic to be this, that some words were said about autism by the Secretary of Health and Human Services. And so if you are kind of more, a meshed in the topic, you very likely have some opinions. And again, I'm not gonna talk about the topic itself, that's actually not what we're talking about. there's all sorts of types of people of personality types, and some are quick to speak and some are slower. And I'm typically the slower, like I said, I often watch and wait, and as I've been watching, I've been a little fascinated and maybe even a little perplexed. And it took me a while to figure out what it was that I was feeling. And I finally landed to recognize that I was feeling really sad. Like really sad. we need each other like really bad and often, so often other special needs moms are the only people. That we feel safe with the only people that feel like they really understand our experience. The only people that feel like safe enough to share are true feelings about the experience of raising a child with disabilities. And I think additionally, you know, being a coach to, to moms like this, I get to hear what they think because they know it's a safe place. To not filter, to not maybe have the right, you know, socially appropriate or correct or accepted opinion or struggle. So I think that gives me a unique perspective. And so what I've been seeing on this social media. It's very recent. And, I see two groups of people that are telling the other group of people that they are wrong. And this is specifically all under the umbrella of d special needs moms. So all the different like, variations that that can look like. What's being said is that each group's interpretation of the topic, again, the words that were said are completely wrong. The conclusion is that. They're unacceptable. And this is what makes me stand back a second.'cause I'm like, wait a second. How can, how can every wait now wait Each, each person is saying the same thing and now there's a dividing line. I saw evaporating before. My eyes is the space we hold for each other. That there used to be this kindredness because like, hey, we are both the same. We both have disabled neurodivergent or special needs kids, but now there is Anothering. There was a division of You are wrong about this. And just to be really clear, I'm not saying we can't have different opinions. I hope we do and that's a beautiful thing. I think specifically I. What I'm pointing to, what's grieving me is the sense of rightness and wrongness, and specifically the moral assessment and the judgments that's flaring up in this space. It's the conclusion of, you're wrong for thinking this. You're good or you're bad. And I see a group of people, this is collective. I'm seeing all the groups of people and. Who is feeling threatened and therefore putting its arms up to fight. But here's the part that grieves me, is that we're fighting each other now, and that is the last place that we need to be fighting and advocating. Our survival mechanisms are like freaking out and they all look very different. So when we feel threatened, we as human beings, we have different responses to that. And one very common way is digging our heels in and looking to wherever we think we're going to get the most certainty and safety and doubling down on that. And listen, we have a lot of reasons, a lot of reasons right now to feel unsafe. There are a lot of uncertainties, like very unclear as to what's gonna happen as it relates to the healthcare of our children, the education of our children, and this one hits deep the value of our children. So that is all uncertain right now. And so let me say that again. We feel threatened because the healthcare of our children, the education of our children, and the value of our children. Is all at a place of unpredictability and uncertainty. And let me ask you, what could be worse for mothers? I don't think there's a lot. Here's where we won't find certainty. It's our stance, our opinion, and even our advocacy. These are buckets that our survival mechanism is going to be filling with evidence. Evidence is kind of in quotation marks, evidence. In other words, proving ourselves right over and over again, specifically in proving other people's wrong. This is a very natural response. When we feel threatened, the more right we can feel, the more certain we think we can feel, but as we all can tell it's not working. I am sad that in our own fear and uncertainty we've lost, this is again, my, my opinion. We've lost what we want most from each other. That's love, acceptance and belonging. Unconditional love, like meaning, not just love. When you say the same thing that I do, when you think the same way that I do love for ourselves and each other and maybe, maybe even for the humans that you disagree most with. For listeners that have been around a while, you'll remember that a motto that I've kind of turned up the volume lately is together is the only way. The reason I wanted to bring my own experience to this conversation is that I think we have an opportunity here. I think we have an opportunity to love each other through these uncertainties. I think we can calm our own nervous systems down, tend to ourselves so that we're not out there operating as little machines trying to prove ourselves correct so that we can feel safe, which I say that with love and compassion because of course we're doing that, we're like in survival mode. So it's very understandable and it's also possible for us to tend to our own needs. Specifically calm our own nervous systems so that we can shift from just being right to listening to being with others rather than defending against others. And this is the thing that I think I've seen as the shift in our community is that. Historically, we've been able to be with each other in a way that has just been, transformational. You know, I get to experience these retreats that I do with, we Are Brave Together, and it's a group of, I don't know, 15 to 20 moms, all with different types of backgrounds, disabilities, faith backgrounds, all the different things. And to be with each other is a gift. It is the gift to have the different types of people perspectives. In the room. And I want you to imagine that group of people now, like on two separate sides now, both believing one is fundamentally wrong and the heartbreak of that. So the opportunity here is for us to actually put down our, gloves that we're using against each other and to shift our way of being. Because guess what? We got shit to get done. Like I think what we all can agree on is things are not okay as they are. There's so many opportunities to serve our children, our families better, and perhaps the skill that I would wanna kind of leave you with in thought is focusing on this skill and it's very much a skill, the skill of listening. You will not be able to do this from a nervous system that is dysregulated. I guess that's my caveat. So there's, I guess, a two step process here. First, tend your own needs, process your upset, and then focus on listening. This, to be honest, has been the hardest skill to develop as a coach. It's the thing I think we all suck at the most. I say that with a lot of love. What if you leave this episode really intending to first tend to your own needs, to calm your own nervous system, to shift from survival mode into the fullest expression of who you are and employing the skill of listening rather than making assessments. And judging Going out there with the intention of deeply understanding your special needs mom, sister, who thinks differently than you do, has different needs than you do. Not having to have a response, rebuttal or judgment actually just being with, just listen and notice how quickly you go to their right. How could they, what's wrong with them? And then watch as you then jump to find somebody who's going to reiterate what you think is. True. So that's a very common response. And so that's when you're gonna know it's time to recenter. Go back to listening. It's the gift of being with people that's not just for them, actually, it's, it's a lot more for yourself than it is for them. Being with people without judgment is a gift to yourself. I am gonna leave you with that short, maybe even a little sweet, maybe semi-sweet. And if you feel like you have a comment or question, I always encourage you to reach out via the text. This show function of the podcast, you'll just go to the show notes and it says, text here. And I would love to hear. What your thoughts are in this episode where you notice you get stuck in listening, and I will leave you with the motto together is the only way.