The Special Needs Mom Podcast
The Special Needs Mom Podcast
Impossible Levels of Support & Acceptance That Lead to Life Transformation with Diane ( Part 2)
Hello and welcome to the podcast. I'm back with part 2 of the conversation with Diane (her alias.) Part 1 is back in episode 163. In this episode, we explore her transformation, finding the right support, and the emotional journey towards acceptance - a powerful tool for life-changing transformations.
Discover how acceptance plays a key role in trusting yourself, facing challenges, and paving the way for changes you can't even imagine. This story celebrates the resilience and strength of a special needs mom, inspiring you to believe in your own power to handle anything life throws your way.
Full Show Notes
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Hi, I'm Cara, 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. This forward has 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 this special needs mom podcast to create connection and community with moms who find themselves going 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. I'm so glad you're here.
Speaker 1:Today's episode is a part two of a conversation that was previously released on September 13th. The podcast episode that went live September 13th was the first part of this conversation, so you may choose to go back and listen to that. If you haven't, you can jump right in here if you'd like to just take a risk and jump right in. What I want you to know about this episode is that my guest chose to record anonymously. I mean, obviously I know who she is clearly, but we're not actually sharing her true identity. I like this. It sounds so mysterious. We're not sharing her true identity. Why? Because for her she's like I can be even more transparent. She's actually a very transparent person and she's going to say it like it is, as I'm sure you know from part one. But this allowed her even more freedom and that's what she wanted to do, and I thought that was a brilliant idea.
Speaker 1:This episode is going to be obviously a continuation of the conversation and we're going to jump right in. We're going to be starting to talk about support groups and you're going to hear Kirby for an after, and it's definitely a stark difference of where she started and where she is now, and to me, it is a story that shows what is possible for people. When people lean in to exploring where they are, even when they feel so stuck, it feels impossible that you can still create something totally different than you're experiencing now and I don't know, it's kind of what lights me up. So I get really excited about it and I think you will too, because I'm sure there's an area in your life that you feel like is impossible or you don't want anything to do with it or you can't get far enough from it. But perhaps if you're willing to kind of investigate and be curious and approach it through a different lens which is essentially what coaching is then you may have a different experience. And one thing that she is going to share in this episode is getting the right support, and for her, coaching was part of that support. It wasn't certainly the only thing she did, but she shares about, like, what it was like to be able to have this space that was curated by the coaching community that I happened to lead and what it created for her, what it allowed her kind of the gift it was for her. And so, yeah, this is a great plug and, yes, intentional on sharing a little bit about the Pathway to Peace program.
Speaker 1:So, as you listen to this episode, or even now, like now, you're like okay, I already heard about it, karen. Like I heard you last episode, I heard you did the episode before that and I get it. You want me to explore a pathway to peace. Yes, you're right, you're getting the message, and I want you to do this for yourself, because you deserve it. You deserve to give yourself this kind of attention, this kind of care, and so does your family, and so my hope is that you will pass whatever you're doing and click on the link in the show notes to say, yeah, I want more information, or yeah, I'm willing to have a conversation and to just explore it. You don't have to sign up At this point. There is no like now you're stuck forever. It's very much, hey. If this is something that feels like the right thing for you to step into at this time in your life, then let's do it, and I'm here all the way to support you. So, as you're listening to this episode, if you haven't already done it, I want you to consider hey, what would it be like for me to step in, just like Diane did and have a story just like her, okay? So now that that plug is over, I also want to talk about.
Speaker 1:The last part of the conversation really is around acceptance, and it is a powerful example of the power of acceptance. Many of you that I talked to are, like, very clear that you haven't accepted or truly accepted, and some of you think you've accepted but you really haven't. You can't get into it now, but there's a lot of reasons why acceptance is so powerful and, again, this is a great reason to really work with somebody outside of your own brain so that you can kind of see where you're at. You can have your own story reflected back to you so you can see it in a way that actually empowers you to move on to the next step. Whatever that is for you, let's jump right here. You're going to jump right into the middle of the conversation where we left off two weeks ago. Enjoy the episode.
Speaker 1:So one of the things you were also very resistant to when we met was, like you said, anything to do with anything being special needs, mom disability. You're like, nah, I don't want any more of that than I already have to have. I think you've changed a little bit in that area. First, what I want you to share, if you're willing, is like, why were you so resistant beyond just not wanting any more of it? What was it about community that's based around this identity as being a mom caregiver that you were not attracted to.
Speaker 2:Well, I think part of it was she really didn't fit in any category. She wasn't diagnosed with Down syndrome. I can join all these Down syndrome groups with people who understand Down syndrome and the challenges. So we had a rare genetic mutation situation. She was under the umbrella of autism, but I don't really think she was autistic. So I didn't really want to dip into the autistic world. Plus there's such a wide range of issues that I felt like I couldn't relate to most of it. The autism world is so big and overwhelming too overwhelmed already and didn't want to take anything else. Plus I felt like I had gone through so much with just learning about her issues that I kind of figured out an answer for her on my own.
Speaker 2:I didn't really look to other people to kind of figure out what do I do about this, what do I do about that?
Speaker 2:I kind of had done that already, mostly with professionals.
Speaker 2:And then when I thought about a support group, which I probably did about five or seven years ago, I was kind of open to the idea and also I pictured a group of moms, an office and a circle complaining and I just felt like maybe we should lift each other up and be like, oh, you know, you can do it and we're not alone.
Speaker 2:And then I felt like you know what, if I go to a group like that, all I want to do is bitch and align and complain about how bad it is, and I'm going to bring everyone else down and I am nothing to say. I'm just going to be a negative Nancy and I'm going to just bring the whole vibe down and I'm going to be a complainer and I can't not complain because I'm so angry and upset right now. I can't like pretend to be like all cheery and supportive and like this is a gift. I'm going to blessing and look in the ways we've grown and what do you know? No, no, no, no, no. That was not my experience at all and I kind of felt like I've got nothing good to add and I don't want to hear people turning this into like a good thing or a blessing or how wonderful this is, because it's just, my life was just, it was hell.
Speaker 2:And I didn't want to hear that and so that's why I felt like support would be. And I'm not really on social media and the little I've done I find that very actually depleting in my energy. And hearing other people's stories and just even questions or struggles I have so much on my own it doesn't help me and I feel like it brings me down further so I don't really like seeing that stuff or reading about it. So when I did your group, we all shared a subject matter but ultimately we were talking about our feelings, experiences and emotions in that subject matter. So let's just say you know, we all went to war and talked about our feelings of coming home from war. We all had a different experience in war but we all can kind of respect that. We have a glimpse enough of our own war to understand that it's complex and we honor everyone's experience and I really feel like we probably all have PTSD and different gradients based on our situation.
Speaker 2:It was totally different than what I expected and I felt like everyone was very open and honest, like no one was sugarcoating anything. It felt like a very safe place to be totally raw and very open and totally transparent. And I think the beauty of Zoom or calls also create that level of separation and distance where there's more of a comfort. I didn't know any of these people. I had nothing to hide or to be ashamed about or to whitewash and I also felt like I had so much built up energy with everything I was dealing with and that had zero vehicle and opportunity. I don't think I went on and on and on and over, took anyone's time. I think I was sensitive that, but it was like a place where, as I started to go, I felt like it's a place of release. That felt like I wasn't puny anyone with any kind of like poison or negative energy or anything bad, but it was a place to kind of say it and release it and get it out of my body and get that energy out and say it out loud and hear other people. And so every time I went I got something from it, whether it was a release or a little spark of something we were thinking about or something someone else said or shared.
Speaker 2:And slowly, week after week, month after month, I saw the benefit in the release and, as special needs moms, as much as we're intaking is as much as we need to release and the more we're going through, the more we have to let go of. And while we all need our own methods of doing that meditation, physical exercise I wish I were a pianist or a painter and I could get it all out with beautiful art. But numbing yourself me it was mostly like just like Netflix kind of TV stuff and food. It was a distraction but it never made me feel better afterwards. But having the sessions and looking forward to them, I ended them really feeling like, oh, life didn't change. But that release gave me something and hearing the other people sharing their struggles gave me something of like you are less alone in this.
Speaker 2:And that other issue that she's talking about also sounds very challenging, putting things in perspective a little bit and hearing the compassion and so, little by little I started getting kind of rejuvenated. It took the edge off the burden I was carrying. It was a little bit of light and it provided a little bit of neutrality and balance and I saw the benefit of the release in a place that totally understood. I mean, I could say all this stuff on a mountaintop and it wouldn't feel the same. I could say it's my family and it wouldn't feel the same I could say it on social media, it wouldn't feel the same. In order to have a true release, you need to be able to share it in a space with people who are completely paying attention and attentive and listening to you and completely understand Like I kind of make that war analogy where you are and what you're going through.
Speaker 1:What's interesting is I hear you revisit the experience. Part of you know the work, and most work, of moms that have. The life that we have is a lot of grief, a lot of grief, constantly evolving grief we call it, and that one misconception that a lot of Americans have about grief is that you're supposed to go off in a corner, private alone, and just take care of it by yourself, and it's actually very much the opposite. The way that grief really Works and breathes and evolves is actually in community, and so I think that, along the way, with all the other things, you had this space where you were being held with exactly where you were at and Accepted and loved and held up right like just how you were. So I think that's the experience that you're describing. You've changed your tune as it comes to Support groups, so much so that now you have taken on the role of leading a support group. Tell us a little bit about that.
Speaker 2:Yeah, that's kind of funny, isn't it? So I moved and you know you had gone, you know, through a difficult time with Levi and shared Basically all the support you had at different phases in different communities and I was just like in a damn carry. I was just so blown away by all these people and groups and like I was just really Like both intimidated and amazed and astounded and like in disbelief that you had such a Multiple it seemed like different support groups or support. You know systems in place and you would share about how important that was, how critical that was and how helpful that was, especially because you have other children as well and I felt like man, that is he and that's really important. I have nobody, like Nobody, who would Understand the level of this and kind of step in and help, especially when you're talking about a crisis situation.
Speaker 2:That's not a couple of days, but you know, it's a good time and then through the group and seeing how the support of other people Can really be emotionally helpful, even though, look, at the end of the day, we're going to the appointments, we're in the hospital, we're, you know, in the middle of the night up in that many ways we're doing it alone, we are the ones who are doing it alone, but having that emotional support and those check-ins and helping them with other things when all the stress is so depleting of energy, those can be little lights to keep us going because we have that support. And so you kind of modeled that and the benefit of it and shared how it helped and I totally bought into it and I believe it and I know it's true both from our group and just, you know, from kind of how I've Continued on. And so when I moved, the first thing I thought is you know, I would love now that we're back in person and I want to meet people anyway, because I'm new and I kind of have that. You know You're energized when you first move somewhere and meet people. You know other special needs moms who are looking for community specifically for the purpose of Sharing their experience, and what I love about the group it's through an organization. They are very clear in the beginning that nobody is here to offer opinions or To make any suggestions or recommendations. That is not what this group is about. What this group is about is Sharing what you want to share, or just listening or just observing. We are not here to fix anyone or to make anything easier.
Speaker 2:You know, it's often hard to hear the hard things that people are going through. It's hard to hear it and we naturally want to say, oh, have you tried? Do you know? How? About? You know? And you have to stop yourself and just say, okay, I'm just here to be a witness, mm-hmm, to your life, you know, like you did in your group and in a person, and so it's interesting. At first I Wanted to do things that were very energy giving to me and energizing, and the first couple times I kind of felt like it was a little draining and Maybe I didn't know if I wanted to continue, mm-hmm.
Speaker 2:But the first couple sessions, and I don't know what these women did before this group, maybe they had nothing, maybe they had something, but they all had so much to say and it reminded me of myself when you bottle this up for years and years and years and you have no vehicle to put it in. It's like at every turn I thought someone's gonna say, oh, you know, this is my kid's name, the situation. But no, everybody wanted to say their whole story and they wanted to share their whole kind of experience and I reflected on that upset. Oh, they want to be seen, they want to be heard, they have something to say that nobody understands and gets and they don't even attempt to share. And they're here and it's been X, many years and they're asking Will you listen to my experience in again, this war analogy in this war, in this battle, and when we gave the green light, everybody just let it go, just let it go.
Speaker 2:After a couple times I am like, oh my gosh, I'm serving in need that these people have to release, just like you did for me, right? And after a couple more times, and you get a flow within a group, right, the energy balances and it is much more of a reciprocal energy giver receiver, because we're all both speaking and also listening. So now I don't know that I would ever stop, because without it, where would people go? And they have to have this release. So the more I've kind of I guess you would say the buzzword lean into it, the more I acknowledge how in demand and necessary this is for our community and how special it is. And if you try one and it doesn't connect, maybe try a different group. But when you find the right place for a release and also to hold someone else's story, it's very powerful to hold someone's stories.
Speaker 1:Yeah, to hold someone's story, just like you just said, is actually a gift for both people. Oh, so beautiful. Yeah, I mean, I just love the full circle. And for me, knowing that the work I got to do with you led you to the work that you're continuing to do and now to being part of who I was for you, rather, people, that's my life purpose being fulfilled. So thank you so much.
Speaker 1:And the other thing I think is just so cool to look at is, if I look at early conversations, you had a very low level of belief. It was there that you could eventually have the care team for your daughter that you wanted to have. That would actually allow you a little bit of that breathing room. And you went so far. I love this example. You went so far from moving states. So when we started working together, you lived in one state. Now you live in another and I think it's cool to share that. You went with intention. The reason you went to this state was for the care that you could have access to. So when I heard from you I don't know how long ago it was now, but that like it was working, that your team was coming along, that you were getting the support that you needed. I don't know that was a really, really happy message to get, so share a little, if you will, about building your belief in that deciding it was possible, searching it out, creating it and then ultimately now having it.
Speaker 2:It was a huge reason why we left. But, as any mom knows, especially when you have severe issues with a kiddo and you're leaving everything you know and all the doctors and the teachers and the professionals and the insurance, and it's super scary because the truth is, no matter how much research you do, you have no idea what you're going to get somewhere else until you're there and then you're I don't wanna say, stuck. I guess you can always move back, but it takes a lot of courage to do that because there are no guarantees. But what I can tell you is in my research, because we distinctly look to see where we're gonna move, based on her needs, the services that we need, and again, we're an extreme case. I was in disbelief at how some states treat our population. Well, I'm very much a conservative in all ways and I do not believe in waste or fraud or any of the stuff that goes on with the government when it comes to services and public accommodations for disabled and all that. The most compromised and discriminated population are most severe disabled people, both children and adults, and they are the ones without a voice. And to research what states are doing, an adequate level of support and increased burden they put on the families is just really unfathomable and that was shocking to me and, I do believe, reprehensible. However, there are 50 states and there are some that do it differently, and so now being in a place that fully supports her and her needs and the services so that she has what she needs these are basic needs for her has been completely life changing.
Speaker 2:And while we left our family and all the things we knew and a lot of good stuff, because my life and our life was so consumed by Emma, when her life got better, all of our lives got better and even our extended family, who didn't want us to leave, can see how much better everybody is doing and thriving and growing, including Emma, and Emma did so well when we moved and I'm like, oh my God, she was stuck, she was bored, she needed to be invigorated, she needed something new and because her situation is so extreme, there were really few options for her and I don't look that as a slight on where I lived. You know there are few options for her anywhere in the country, but she was also not growing and evolving and thriving at a time where I really needed to maximize all the therapy and all the services because of her age, and so she really blossomed. I was really scared about the change and all the you know, just all the newness, everything and every part of her life, and she just blossomed. I was honestly shocked and so now that I'm in a supported place, I feel like a human being again and I know that sounds dramatic, but it really feels true and I would say that there's a lot of fear that we have in losing what we know, but there is so much to be gained in an environment that can support you. And when I say you, it's really your kid right. If you were the net and you're doing everything, then you need a community that's going to support you so that you can not be doing it all alone, even though it's uprooting everything. If your life is being significantly impacted by your child's needs that are not getting served, then it's possible you're not in the right place and the biggest kind of image I have is I'm very aggressive and I could be a zealous advocate and I was pounding and pounding and pounding on the door where I was and I was angry and I was frustrated and I was mean and I was, you know, using swear words because I wasn't getting the services I needed for her.
Speaker 2:And you know what I heard? Sorry, my apologies, I understand, I'm sorry and I was just sick of it. Frankly, everybody just had no help and no answers. And meanwhile I was stuck and then I moved and everything changed and not to say, you know, this is not the end of the rainbow here, we're still in it.
Speaker 2:But the analogy and the image I have is I was knocking, you know, like crazy on the door. I needed to knock on a different door. You know, like we say in the law, you're trying to get blood from a turnip. I was never going to get what I needed, no matter how much I turned blue in the face and pulled out my hair out of frustration, and I knew I had all the documents to show she needed what she needed. But I was just getting sorry. You're right to use she does, but we can't, we don't have it or whatever it was, it was a no.
Speaker 2:So once I moved doors, it was all different, because I was just focused on the wrong door and I didn't know that until I left and I realized, oh, I don't have to fight so much and there's more of a system in place here that fits my needs and her needs and our support.
Speaker 2:Once you get a little bit of possibility and a little bit of freedom and a little bit of a break and a little bit of support, it just kind of adds and adds and adds and adds and you start to kind of release more and open more and exhale and realize, oh, I have a life outside of caring for her and fighting for her and it's been completely life-changing. I hope I age slower than I have 10 years with her now that I have more support, because it was stuck in the life out of me and I would say that's a real consideration, as dramatic as it is. If your kiddo is your life and their needs are impacting your life significantly, then you need to be in a place where you are supported and your kid is supported. It's been a significant difference in the quality of all of our lives. All of our lives have been affected by that additional support.
Speaker 1:So all you're listening can now know it's possible, and it doesn't necessarily mean it's easy, but I think hearing the story for me is just it's invigorating. It is exciting because I'm thinking in my own life oh, what am I afraid to let go of or change or shift, because your words were perfect, like it's letting go of what you know is really scary. So thank you so much for sharing all of it. That's one thing myself and, of course, our fellow group members love about you is that you don't hold back. You have the energy and the fierceness, just this fierceness that I think is unstoppable and to the point that you realized, oh, different door. And you kept going. I just love it. Is there anything you wanna say as we wrap up and we close out this episode?
Speaker 2:I guess the last thing I wanna say is while moving sounds very dramatic, I got to another place, which was I was incredibly dependent on care and I had to just sit with myself and say you're going to have to expect. Care is not going to show up, care is not going to do what they need to do and care is going to leave unexpectedly and be unreliable from now to eternity. So if you know that, stop getting upset about it and figure out Plan B when you get that call for the million time of a family emergency. My car doesn't work, I'm sick, we've heard it all right. In this expansion of thought that you've taught us, I finally went to Plan B and C. I said you know what I need to go to the psychiatrist and say doctor, when we're in a bad place and I have no support, I need medication to tranquilize her as needed in order to manage both her safety and mine, and in critical situations I need that. I also said to my husband you know what? We need to talk to state services and completely change her room. While she has a mental disability and not a physical disability, we need accommodations in her room so it's safe. So if I need to walk away. I know she's not going to get hurt, so whatever that's you know padding, cameras, equipment, whatever.
Speaker 2:So I started to think outside the box of how do I figure out the care. How do I figure out the care and realize, okay, you know what, let's accept, care is not going to come. Then what? And when you have a baby and you can put the baby down in the crib and you know the baby's safe and walk away, it allows you to recalibrate to address an urgent issue like poop all over the room or glass on the floor right when you have no safe place for a child who is a danger to others and themselves, what do you do?
Speaker 2:So I guess the invitation from that is, even though it sounded ridiculous to me to have a complete accommodation for our room for a mental disability, I finally got to the point where I realized it was necessary, even though it seemed crazy to me to talk to a doctor about medication at tranquilized my kid because of behaviors, when I realized that she was being completely unsafe and I had an urgent issue and I had no place to put her. What are my options? And I thought you know what? What's a hospital going to do what's a group home?
Speaker 2:going to do, you know they'd come up with an alternative, and so you really kind of need to release every single notion you have of what you can and can't do and just think beyond, especially when you're running into a wall that's driving you crazy, like the caregiver situation. You just implement more and more support in ways you may have never imagined, but you're at the end and you realize I don't want to be here. This is where we are, and if I'm going to expect this is going to happen, what's my PAMB? So the biggest added takeaway I want to share is just come up with your PAMBs. Expect it to need them.
Speaker 2:Stop banging your head against the wall when you're disappointed time and time again. Expect it and then what? So that if a caregiver calls out, I don't lose it and I realize, okay, all right, I've got the support, we've got this figured out, I've got plan B, I've got plan C. We're going to be okay and maybe we don't need any of that, but if we do, it's there, and having that emotional support of knowing I have my plan B and C in place, I can get through this makes life so much easier because you're not waiting for that next ball to drop and you already have a plan in place when it does, because it will. And that expansion of thought is part of that possibility we talk about in group coaching, of really opening it up and saying what else and what next, and being open to all those possibilities that you may have never considered before.
Speaker 1:Yeah, and the key that unlocked all of that for you was this acceptance For you. Finally, like you said, like to say, okay, so I'm not going to get the caregiving that I should have, that should be available, and all the things like just allowing it to be what it was. So beautiful illustration on the power of acceptance and how it opened the door for you in a really, really empowering way. Well, diane, you know how big of a fan I am and I'm so thankful for the privilege of witnessing your evolution, your growth, your energy, your fervor, and I'm so thankful that you are part of our community and get to be a model for others, for some of these ladies that are kind of where you started, where it just feels so dark and hard and heavy and they feel trapped. So thank you so much for this conversation.
Speaker 2:Thank you.