How to Finally Organize Everything You Carry as a Special Needs Mom

Caregiving does not become overwhelming because we do not care. It becomes overwhelming because everything lives everywhere, and the mental load has nowhere to land.

In this episode, Kara shares the system she built to organize medical information, providers, tasks, and caregiving knowledge into one flexible command center you can actually use.

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Transcript

Speaker: 1:31

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.

2:39

Hello and welcome to the Special Needs Mom podcast. This is gonna be a take two of this episode because I just recorded an entire episode. Entire episode with. The microphone turned off. Darn it. I had, taken my microphone on a trip with me thinking maybe I'll record an episode while I'm away. Which I, I knew at the time was lofty because I did not. And, that is a drawback from having to get set up again and maybe forgetting the most important part. Alright, well it's 2026 ladies. And a few gentlemen, we made it through the holiday break, the holidays, Christmas and New Year's. Well, maybe we shouldn't get, so, get the cart before the horse, if you will. Three of my children go back to school this week. It'll be this Tuesday. And then Levi, my special needs child goes to school the following week. So he and I have a week off together, and my personal goal is to have zero incidences. Which result in insurance claims and or home reconstruction projects. And if you're like, what are you, why are you saying that? Well refer back to, the fall, in which case we had both of those things. you can go back a few episodes to fill yourself in. So here we are. We made it 2026. We're starting a new year, and we celebrated Christmas at home in San Diego. And a couple days after we packed the six of us up into our minivan and woke up really early and drove all the way to Idaho to visit our friends, Alex and David, David kind of just has to, he's like friend by association. Alex is David's wife and Alex is the former nanny of our family. And also the current editor of this show. So it's always fun. what you don't know is when I record these episodes, sometimes I just start talking to Alex or I chat with not chat really, but so she gets to hear it. So, but what I hope she doesn't take outta the show, and now that I said that she probably won't, I think you guys will appreciate this uniquely, and that's why I wanna share it, is that One of the great things about this trip, besides that my children were all so excited to go, is the deep appreciation that we as parents can have for people who create space for families like ours. And so with Alex, our family feels safe and valued. And that is, again, so. Rare and valuable and you know when incidences happen, not if, when they happen. It's just so nice and comforting to know that you're gonna be met with understanding and not judgment. So that was a really good trip. The only part of the trip that. Was not, positive was for my toes. I wore two pairs of socks, like almost the whole time I was cold, man. And I, I think I just have bad circulation. It's like, yeah. So I know my toes are very long and very slender and like extra. I wear size 12 in women's shoes. So now you all are like, whoa, you do have some long toes lady. I do. I have really long skinny toes and the circulation just does not work. So my toes are happy to be back in San Diego, even the rest of our families. Wishing we were still in Idaho. So we're back kind of trying to, to get settled and I find myself in this. Almost, but not yet feeling. So even like today, it's a Sunday. I'm recording the episode. I don't normally work on Sundays. but I have this like eagerness and excitement to like get back to the routine and, you know, normalize and to kind of get my bearings again. yet I am not quite there because as mentioned before, my kids are not all back in school this week. And like the picture I have is like of a thoroughbred race horse. And like of it, like being ready to race, it's doing what it's meant to do, but yet it's stuck in the gate. And so that is how I feel right now. And so I feel like it's gonna be a challenging week ahead. I mean, it's always challenging when, we're out of our routines, particularly when, we have conflicting responsibilities and commitments, such as, for me, it's like I work and Levi home. So, I will check in next week and see how it went. And again, my personal goal and see if I have met my personal goal of having no incidences, which I think I will. Obviously, I'm gonna set myself up for success. And so getting into this episode, this episode's a little different than episodes I've done in the past and I'm really excited about it. And to start, I'm gonna give you some backstory and particularly backstory into my career and, Kind of how I ended up, well with this episode today. So coaching is my second career. I think a lot of you know that who've been around for a while. And my first career was in the landscape industry. I was a mostly, I mean, I had different roles, but mostly worked in high-end residential landscape construction. That's a mouthful. I previously worked for millionaires and billionaires building their dream landscapes. And what I loved about this work was taking something from nothing. Like just a thought and building it into literally the vision. And there was a lot of problem solving, a lot of organization and project management. And I happened just to be very good at project management, probably mostly because my little bit of obsessive and controlling nature. So these things made me good at the job. I'm detail oriented in some ways. others not so much. So I joke with my community that part of my brand is typos because, spelling and typos are not what I am really good at managing. but other aspects, such as different aspects of project management I happen to be really good at. And so this previous career is where I fell in love with. Spreadsheets and all the potential that one can do with these limitless lined up squares and cells. I just, I don't know. I feel like my brain is just very compatible with spreadsheets. And for example, back in the day, this is so many years ago, this is when like my oldest kids were little and probably before Levi was disabled. so this is now like, hmm, let's call it like 14 to 16 years ago, I created this babysitting co-op up spreadsheet system and there was basically an exchange system between me and about 12 other moms I knew from church. And we would exchange babysitting or watching each other's kids. So it was like this wonderful thing.'cause you had this like mom coming to watch your kids. There were little kids too, like, you know, the kids were young and so it was free and it was just like so much fun. And so this whole system worked for years. We had this exchange system going and I'm just regretful because I. In a moment of wanting to clear out my digital spaces, I deleted it and I just feel like, I mean, it was, it's probably antiquated now, but I feel like it would've been really fun to look at it. And like, be happy about this thing that was part of my life so many years ago, and that worked. Okay. So why am I telling you that part of the backstory? Well, it's because I have a new creation that I have created to solve some of my own problems. But like many of us, we share similar situations. And so got to thinking, me solving this problem for myself was actually potentially me solving this problem for many of us in this community. And so I really started to get excited about it, about this idea when I thought about sharing it with you all so it was, something I started to do to help myself, but then I feel like I hacked it for myself because it's like a million times more fun for me to do something to help somebody else than to do like. Work for my own caregiving life. And so lemme give you a little bit more backstory actually, in terms of describing the need and or the unmet needs that I had, the logistical challenges I was having. And then I will tell you about what I've created and why you should join me in using it. So, again, giving a little bit more backstory. So I have four kids ages, eight to 18. Levi is 16 and he's my special needs child, and he's about to graduate high school. In 1.5 short years, you're like, well, it's not that soon. Well, it is soon. If you think about all that needs to happen to create the systems and structures to support him and therefore myself by the time he no longer has the structure of school. So it's definitely excited my brain, in a lot of different ways. another way of saying that is I'm really stressed about it. And so, I'm finding that I have a need to have my resources lined up, and yet I've been struggling to do that for a number of reasons. I think one of them is adhering to my own personal deadlines. So look, yes, I have a deadline, that's coming toward me, but doing anything about that now is all self-imposed. And this work is hard for me. It's intimidating, it's unfamiliar. I'm very uncertain about it. And all of those, ingredients, cook up a recipe that is very conducive for procrastination. We as humans don't like all those unfamiliar, uncertain things. And so we're like, bad, avoid, do not enter. And so, and I say this with humor, but also like a lot of compassion, like of course I don't wanna go do that. It's it's embarking on territories that. Are like a little scary for me. And so, and scary not in like, ooh, someone's jumping outta the bushes, but scary as an uncertain. And also, pretty significant because what it means if I don't get the support set up for him is some real challenges ahead for me as I am his primary caregiver. So that's one of the reasons, right? So it's like I have self-imposed deadlines, but a lot of reasons that I like to avoid those and not do it. Secondly. I don't have good systems like I am like, okay, well what? How do I even go about this and organize, essentially even knowing who to go to for what and really kind of understanding actually how many resources I do have. I'm a very visual person, so having a visual way of seeing what I have and who I have and what needs to get done is really important for me. And, you know, simultaneously this list of resources and agencies is multiplying as we do, encounter, basically different programs that are going to be, part of our lives when he is not part of the school system. So again, we enter more overwhelm and feeling stuck. And additionally, one of my challenges is that. I've recognized that even though my husband is a really great partner and co caregiver to our son, he does not have the familiarity with all of the different organizations and agencies and who does what and who pays for what and who do we go to for what. And even just all the names and context of his doctors, he doesn't really have those. And so by default. I'm the one that does everything because he literally does not have the contact information or even just the, understanding. And it's just the pattern that we fallen into. And in, in a lot of ways it works for us, but I would like to create more ability to share the load and yet also feel stuck because it's so much information to communicate to anybody even when they're willing. So what did I do? I made something. I made something that solves some of our problems. I mean, do I think I'm going to solve every single problem that we all have through this beautiful document? Probably not, but I do think it is a great start, although. A funny backstory is that I was so excited about it. I had this idea, this vision, this thing. And so I, I, I asked Andy, who Backstory does the behind the scenes here in the podcast production and makes all the things pretty, works in conjunction with Alex. And she's like, mm, I don't know. She wasn't sold. She's like, maybe stick to your normal stuff. but then I kept going. I was like, no, no, no. Like listen to my vision. I was a little bit pushy. Imagine that. and because her thing is like, well, there's a couple other really good resources and there are, I agree with her. And what I was finding is it just didn't fill all the needs that I had. And the missing link was flexibility. So there's some really good programs out there and. I used them, but also I'm finding I needed more and more flexibility specifically, and what I needed is a project management tool. And there's all of those things, but they're all disoriented and discombobulated. Like they're everywhere. Like all the things are everywhere. Even if I look at my office, I'm like, okay, I have some files for Levi over here, and I have some over there and some's in my computer. Some of them just in my head. and I'm thinking about them at night trying to organize them all. And it's not necessarily how I wanna spend the hours where I'm supposed to be slumbering. so I persisted and I was like, no, I'm gonna give this a go because I'm gonna make it for myself because I need it, and I then gonna share it with this community because I just think that's fun. So what is it that I'm talking about? What did I make? Let me tell you a little bit more about it. So essentially it's called the caregiver command center, And it's a place where you put all the information that you need to be the leader and be the head caregiver to your child with efficiency, with expertise, with ease. Well, that sounded good. I just made that up. Okay. but it's like, okay, you know, I get an email and the person's like, I need his UCI number, and I'm like, okay, great. And like, where do I have that? I mean. Do know, but I have to be physically in my office and therefore, you know, can't just spit it off very easily. And you know, again, back to, there's just so many different agencies and people involved now that it's beyond my ability to kind of use my old antiquated systems. So it's is a place where we can list all of the doctors and all of the providers and have the level of details, how often we see them. This is a place where we can put the questions we need to ask them. So when you think of it, it's like, oh, I'm gonna put the question there. so that I have a place to put these things so that next week when I go see them, I can ask them. It's a list of medications and equipment and keeping track of which pharmacy you get, which medication from.'cause I'm sure I'm not the only one that we have a handful of pharmacies for all the different medications. Some are specialty pharmacies, some are local pharmacies, all the things, a list of conditions with explanations. And so, you know, I have a list, so, kind of a, a side story. when we did have an incident this year with my son, one of the people involved said, Hey, can I have a list of all of the conditions your son has? And I said, sure. And so I went to my computer right, and, and printed it off for him. And, the little list takes up about a full sheet of paper and he looks at it. He is like, oh, wow. I feel so validated. But it was just really nice to be able to like go print it off. And I have a number of these like templates and, and documents together because I've had to create them over the years for different agencies and applications. And really what I've done now is I'm putting them all in one place so that it's not like, okay, where did I put that one? And I have a centralized location for all the details. So lists of conditions, right? So it's like, if I just tell you, one of his conditions like diabetes, Inus, you are very likely not gonna know what that is. Or worse, you're gonna think you know what it is and you're gonna be wrong. and I use that one specifically because diabetes is a very familiar word to people, so they automatically think, oh. Has something to do with sugar, that is a different kind of diabetes. I think it's called diabetes mellitus, and he has diabetes inus, which has nothing to do with sugar, has everything to do with blood sodium, and so I can. Have a very succinct and clear explanation of that. If I need to either read it to somebody, explain it to somebody, or give it to somebody in writing. If they're, let's just say caring for him. And I need to be able to have them understand what some of these diagnoses are or even think in advance, like what do they need to know about this condition to keep my son safe. like an example is we are having a new care provider start, actually on Tuesday. Who's gonna be a respite provider slash companion for Levi. And, I've already used this command center several ways. One, pulling up the job description and like, okay, this is the job. This is like what I'm looking for. And I had that handy to be able to explain that to him. I'm going to use the list of conditions to train. Okay, these are all the conditions. This is what you need to know about my son to keep him safe. a list of emergency protocols. What do you do if. You find yourself in a situation that could happen. obviously I'm a resource, but you know what, what if they can't get ahold of me? so this is gonna be like, also something that I can use. So It's a digital tool. Also designed though to be able to be printed so that you can make an actual manual slash binder that you can keep at your home or provide to family members that have all the information that you wanna provide to them so that you know your caregiving. A role is well managed, is well, project managed. I'm just saying this, I'm like, oh, not to say that our kids are projects by any means, but, it's kind of the same work to be a really effective project manager as it is to be a really effective caregiver. Okay. So other, tools on this particular document. So is a document. With many different tabs that you'll be able to use as is or customize as you want to. One of the limitations, and one of the reasons why I've made this is that, everyone's so custom and so for one person, having a section on medical equipment is gonna be completely. Non-applicable. Let's just say your, your child is on the autism spectrum and doesn't really have a lot of medical equipment. Maybe medical is not your thing. Maybe it's the behavioral aspects, and you wanna have tabs that include all the different behavioral interventions or the common language that you use to support behavior. Or maybe it's directions on how to, troubleshoot the a a C device your child uses. This is where you can keep all of those things, almost think like standard operating, procedures. SOP is very commonly used in different, business settings and I feel like, again, this is where we can kind of borrow some of the expertise in businesses and bring'em over here and use them very effectively to manage our lives. All right. the other section that's gonna be really, I think very helpful is I have to, I actually, I'm still iterating the name of this section. I have a file folder on my desk called. Levi open items, and so whether you, we call'em active items or open items or just stuff to do, this is where I use that file or this tab now to keep things like. Notes on following up on the wheelchair repair, or which doctors I need to contact or when I need to do something. So I might be able to put something as a reminder in there, or I probably put it in my calendar, but use it to be able to effectively manage all the different aspects that I do for my son and that I know you do for your child. So a way of, again, managing the project or the, different items that you wanna do to. Effectively, expertly and easily manage your life. And another section of this document will include templates. So I mentioned a little bit ago that I used this to help train a new caregiver. so I have. Over the years, a lot of different job descriptions or templates that I use and I customize as needed. And so I figured why not put these in this document so that you can take them, you can customize them and you can use them. So I have the templates along with different prompts that you can use with chat G two P. Wait, I'm gonna say it right Chat. GPT. I practiced that over the week with Alex. She's like, you never say it right. I'm like, I know. it's part of my brand. okay. But, so different templates that you can customize, I'll give you prompts that help you do that. So that baa bing, baa boom. You have the tools that you need to effectively, one, get more support for yourself, but also to manage your life. So, other pages in here is gonna be a list of house rules or, there might be a softer way to say that, but let's just leave it there for now. So these are what you can provide to in-home care providers. So think nurses or respite providers, or even just babysitters if you have them to say, Hey, this is how things go in our house. We ask people. To take their shoes off before they come in and we ask people not to eat, bring peanut, any peanut products into our house. if you're gonna stay all day, you can use this part of the refrigerator, for your lunch, kind of setting the expectation that we're not fading you. So this is where you can use the refrigerator for your lunch or please bring an ice chest, or whatever that is, right? Like however you wanna manage your home. But you have a, a document that you have developed over the years. Usually learning by what didn't work and that you can update and you can evolve as you can continue to again, manage your mind and your life. So, let's see, what have I left off? I think what I want to emphasize is that I feel like I've gotten to glean so many tips and tricks and like brilliance from this community that then, you know, I've put notes here and notes there, but this is where I'm compiling it into one document, to one Google Sheets document, where you can then copy it and download for yourself and then customize it for yourself. And now I know what you're thinking, you're like. Okay. Like the, idea Kara,? But it sounds like a lot of work. Like when am I gonna find that time? Little lofty. I know. Well, here's my answer together is the only way, and this is another huge aspect that like where I was struggling and actually I had made a mental note, or even actually a physical note, I said, reach out to Kristen. she's a mom that, is local-ish, and I don't know her super well, but she has, gone before me and in my mind I was like, I am gonna ask her to literally, I'm gonna ask if I can pay her to meet with me an hour. I dunno, I didn't get that far an hour every week or every month to sit with me so I can do this work because I was really struggling, to get anything done because of all the things I said before. And so that was, gonna be my answer until I came up with a solution. And so get back to together is the only way. Well, I do believe that US moms linking arms supporting one another. In actually very simple ways is pretty, profoundly effective. And one of the simplest and most loved ways that we have done this inside of the Pathway to Peace coaching community is in doing what we call a power hour. And it's actually so simple. It's kind of funny. it's an hour. That's on the schedule set for a specific time and a specific date where we all come together with our own individual wants and needs. We start the hour making a declaration, or specifically saying what we're going to accomplish or focus on in that hour, and we close the hour celebrating ourselves and acknowledging what we've accomplished. It's So much more fun than doing it on your own, or I should say not doing it on your own because the likelihood of us getting some of these things done that again, are really intimidating, maybe not very fun, maybe overwhelming is just not super high. And so this is a way of building in support and accountability and even just more lightness around it. And so. In addition to giving you the caregiver commands center template, I'm inviting you to one of a series of four weeks of power hours. So I've put four dates on the calendar in the next month, month and a half, and the idea is that you come, you work on this. Maybe you see a friendly face or two and you feel connected, you feel accomplished, and you feel like you're making progress on managing your life and maybe areas that you've been delaying or procrastinating for a really long time. And what I love again is that you can really customize this to what you need. So maybe you're like, okay, well I don't know that I have a ton to do on this caregiving template. but you can use this hour to say, Hey, I really need to work on, maybe something for yourself. Maybe it's something to say, Hey, I need to find, new babysitters or new childcare providers. And you can focus on that for the hour. So you can really use it forever. You want, obviously most of us are gonna be working on the caregiver command center template and creating it for what we need it to be, to manage our lives. but you are welcome to use it for whatever you want. So to get your copy of the caregiver command center template, all you're gonna need to do is go on the show notes of this episode and look for the link. It says, get your caregiver. I dunno what it's gonna say, but it's gonna be obvious. And then you'll provide your email and we'll send it to you. No strings attached. That's just it. and then secondly. You will be able to, look at the dates for the power hours and sign up for those. I am asking for our SVPs, so I know you're coming. And, again, I'm gonna put at least four on the calendar. So the likelihood of you being able to make at least one, I don't know. It was hopefully pretty high. And they're free, so I'm not asking, for anybody to pay to join. I'm doing this because I think it'd be really fun to do this together as a community. And you can bet that I'm going to be encouraging all the pathway to peace current community members to be part of this because it's more than just the, the like, yes, it's cool to have a template. and I think it's gonna be really helpful to have everything. in one place. I think it's going to allow us to be really effective, managers and leaders, but I think it's like the base layer of doing the deeper work of managing our minds and managing our lives, and it's like building the foundation. It's like creating readiness to give ourselves the stability that I think we're all really, really seeking. So. That's what this is about, kind of at a deeper level. Alright, well, let me think for a second before I wrap up to make sure I haven't forgotten anything. I feel like there is one thing, what is it? Oh, I know what it is. this is my caveat. It's not HIPAA compliant. So you are going to be downloading the template onto your computer and then it is yours. And so, You can decide what level of security you need to make yourself feel safe, because I think one of the limitations of creating actually any software, around this is that it has to be HIPAA compliant. So there's a lot of loopholes for that. So this is my, again, caveat that you can decide what level of security you need to make yourself feel comfortable, and hopefully the hackers don't. Also listen to this podcast'cause I'll know who to go after to get all of my information on my Google Drive. Okay, well let's see. Now I think we're ready to wrap up and good thing I had a practice round. This one I feel like was a little bit more succinct, although, funny enough, it was a little longer. So I don't know how,'cause I feel like I did go on more tangents on the first. Go ahead. Oh, well. All right. Well. Cheers to, happy New Year and in the next couple weeks, we're gonna be kind of settling in to that so you can expect to, to settle in together. And I really look forward to hearing your experience with the caregiver commence center template. And if and when you download it. And you see if anything is missing that maybe is a blind spot for me because it's not part of my caregiving experience, please contact me and let me know.'cause we're gonna continue to iterate this to improve it. And I'm really excited about, just the opportunity to grow together, as we, I don't know, manage smarter and support one another, kind of at a different, like, like I said, this is a different episode because I'm not talking about. You know, the deeper aspects or maybe even the coaching aspects. I'm really talking a little bit more about using a tool to manage your lives. So I hope you've enjoyed it and we will see you on the next episode of the Special Needs Small Podcast.