Raising & Releasing Our Disabled Kids with Wendy Taylor

Fellow brain cancer mama and podcast host, Wendy Taylor, sat down with me this week to talk about the call that changed everything, what it's like to prepare our teenage boys for adulthood and how the educational system can work to more seamlessly support our special needs kids in learning and life. 

Wendy is a certified Educational Therapist, Orton-Gillingham practitioner, Educational Diagnostician, and IEP Coach.  Her podcast is dedicated to empowering parents and professionals in the special education process while her business, Learning Essentials, is designed to meet each student's unique needs. Wendy is your partner in bridging learning gaps and accessing vital special education services.

I am honored to have shared this conversation with Wendy and to connect on our shared journey of raising sons who have battled brain cancer.



Connect with Wendy:
Instagram - www.instagram.com/learningessentials/
LinkedIn - www.linkedin.com/in/wendy-taylor-7106b6a6/
Facebook - www.facebook.com/TutoringLE
Website - www.LearningEssentialsEDU.com
Podcast - Special Ed Strategist® Podcast

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

Coaching Opportunities
Pathway to Peace {Group Coaching Program}: Schedule a Consult or Contact Me

Transcript

Kara: 0:00

Well, Wendy, welcome to the special needs mom podcast.

Wendy: 0:03

Thank you so much for having me. I'm looking forward to talking today as we kind of navigate this world that we're in, whether we wished it or not, here we are.

Kara: 0:14

Here we are. What's fun is that we met because we have a mutual colleague that is in the podcasting space and he said, Hey, you guys are both podcasters, both have kids with disabilities, you guys have to meet. So, What he didn't know, when he introduced us is that, more than that, our kids or our experience, I should say, also comes together because we're both mothers of children that have had brain tumors. So there's a kindred, spirit, going on with between you and I.

Wendy: 0:45

Very much so. But, you know, he didn't know, he actually didn't know anything about my kids. He just said, Hey, you guys have similar podcast meet. And then I dug deeper and I was like, Oh my goodness, how are our stars aligned this way into this club that we probably don't want to be a part of. but here we are and, having this brain tumor experience.

Kara: 1:09

Yeah. So let's give our listeners a little bit more robust, story about where you come from and where you are today. So let's go all the way back to the beginning, back when you were a young mom with, with I think probably two kids at the time, maybe two, three kids. Anyhow, tell us a little bit about, your becoming as you navigated the, the first days of becoming a mom to a child who would become disabled.

Speaker 2: 1:38

Yeah. So we have three boys, and we had three boys at the time and my middle son was having these really random, um, dizzy spells and they were sporadic and like once we were in a car and you know, he threw up, I'm dizzy. He threw up. I thought, well, you know, we were driving in the car for a long time. Another time he was, our babysitter had called me, I was leaving work and she said, Oh, he's just sitting on the couch. And he got up, said, I'm dizzy and threw up. And I was like, Oh, that's weird. And so we had even taken him to, the ER a couple of times and we just, you know, Doctor appointment, doctor point. I'm just trying to figure out. And you know, in your gut, when something isn't right, but you don't know what it is because I don't have a medical background. I just knew what he was doing. And somebody's listening. It's like, yeah, my son, my child's been dizzy and thrown up and it may be nothing. But for some reason in my gut, I knew it was something. I just didn't know what it was. So I kept. Appointment, appointment, appointment. we actually had gone to the ER and they did a cat scan, on his brain and the ER read it wrong.

Kara: 2:42

No way.

Wendy: 2:43

Yeah. Yeah. They said, Oh, he's fine. We didn't see any abnormalities, you know, maybe go and see if it's like diabetes or this or that or migraines.

Speaker 2: 2:54

And so I still, I felt relieved, but I honestly knew something else was happening. And so.

Kara: 3:01

mmhmm

Wendy: 3:02

finally we did get into a neurologist that was like, all right, you've done all this stuff. I literally had a notebook of all the appointments, all of the blood work, all of the imaging, just everything. I was like, here's the notebook. You're like my last stop on this train here. I don't know what's happening. He said, all right, I want you to do these two things. You can do them in either order and it doesn't matter to me. And so I, you know, made the appointments the first one, He did an MRI and I knew because they said we, it was taking a long time and we got out and they said, oh, we did contrast. And so I kind of knew something was there and the following day the neurologist called and they said, first he asked where I was and I froze. I couldn't remember where I was. I was actually an appointment with my son, but I just physically froze and I was like, I really know where I am, which you probably thought, okay, you should probably know where you are. You drove there. and then he said, I'd like for you and your husband to come in. The office today. Do you think you have some time? And of course you knew that's not to have coffee and chit chat with him. And so that kind of started it. And he said, you know, we saw this and I've already made an appointment for you to go see a neurosurgeon and neuro oncologist. Do you have time? He kept asking, do I have time? And I always think that's funny to say, do you have time to make these appointments today? So of course we did. And we went down there and, scheduled his, so he had a, a tumor on his cerebellar. Okay. or cerebellar tumor. and we did surgery and we stayed in the hospital for 40 plus days and he had to relearn everything and then started our multiple visits over quite a long time.

Kara: 4:42

Yeah. It's interesting.

Wendy: 4:43

He just turned 16 last month. So we've come a long way.

Kara: 4:48

Yes, you have. And as I hear that story, I think because there's so much overlap with how my becoming, as a mom to a child with disabilities has been that I can feel it so deeply and I think it really brings me back to those early moments where, I mean, you, these are the moments I think when you become a mom that you, you think, Oh my gosh, like that would be the worst thing in the world to happen if that is unimaginable and how, how scary and awful that would be. And then you find yourself living it actually in the situation that, You know, it was almost incomprehensible. Let's see, give me a picture of your life now. So you have now a 16 year old son two

Wendy: 5:34

other boys. Our oldest will be 19 coming up soon and then our youngest will be 13 coming up soon. And so we have one in college, one in high school, one in middle school. And I was sharing with you before we hit record that when my son got out of the hospital, it was like two weeks before he was due to start kindergarten. And we just sent him, which now kind of sounds crazy. And I think people probably looked at us kind of side eyed of, you just went through this whole experience and you're just getting out of the hospital out of a very long time. And you're just going to send your kid. And I think in that moment, it just felt normal. And we wanted to feel normal. And so we sent him well, we sent him with the caveat that he could have the same kindergarten teacher that our oldest son had, who was just a blessing, Mrs Watkins. we actually still in touch with her to this day. and she put up a tent in the back of her classroom so that our little guy could sleep when he needed to, which was a lot. So he did a lot of sleeping in kindergarten and had a little, contraption to help him walk. And so I'm not sure he got everything out of kindergarten, but he got what he needed. For sure.

Kara: 6:47

How beautiful that that teacher was willing to, make the maybe off book. I'm assuming that wasn't in his IEP to get the tent, to accommodate what he needed

Wendy: 6:55

It was super kind. And I don't know that I would have thought of that. I don't know how she thought of that, but she's like, I think she called it the reading tent so she could get away with having it in her class.

Kara: 7:06

loved her at the tent, but now with the name of the reading tent, I like her even more. She was like, how can I make this work?

Wendy: 7:11

I think the following year there was no reading tent. So it was clearly for, One single purpose, but, you know, on paper, she called it the reading tent for her kids to sit in and read. But my son occupied that tent way more than other students did. Sorry other students, but, they had other nice cozy places to sit and read.

Kara: 7:29

I'm sure with a teacher like that, I'm sure there is plenty of nice spaces to go. It is funny looking back at like the things that we look back that we did that seems so odd now, but they made sense at the time, or maybe they never made sense, but we were just so. Trying to survive in the moment, but then I did make it made sense for that reason. I think about my son and he so he was two at the time of his first surgery and his first diagnosis and So it's really little right two years old and he had to relearn a lot of things and At three, he was able to go to preschool. And because of the way the special education works, he was able to be picked up by the bus to go to preschool. And I sent him. And I'm like, I put my three year old on a bus? Like, just seemed, huh, like I,

Speaker 2: 8:21

I

Kara: 8:23

know at the moment, like I, I was obviously cautious ish. But also I'm like, how did that work? Like he just sat there, there wasn't seatbelts, I don't think. And I don't know, it just seems so odd now to look back at that. And, I also think it's funny because we were going through some of, like, his old school paperwork and I found this journal, this, parent teacher communication log between, Ms. Martinez and myself, and, the log that I recently read was talking about how Levi was, Oh, what was he doing? But he was basically being naughty to the bus driver. Like he was like putting up a stink and I'm like, Oh my gosh, this is hilarious to think of this little person because he was very, very little because part of his, the impact of his tumors, he didn't have any growth hormone anymore. So he stayed the size of a two year old for like, Two and a half years, three and a half years.

Speaker: 9:15

So he was like a almost four year old, but like in a two year old's body. And so I'm thinking of this adorable little glasses wearing guy, like being a total stinker. But he got away with so much because he was so cute. are there other things that you can look back and recall and be like, what was I thinking now that made sense then?

Wendy: 9:36

Oh, yeah. I think in the moment you, I think like you said, it's survival and you don't, it just seems right at the time, to have them do things. And I remember being adamant, like where he was, there was a recreational therapist and why couldn't he have recreational therapy? and it wasn't really a therapy. It was just more of just letting him go. And so I like super bossy about it. And I don't know, but it got him to swim. He was able, there was apparently, there was this little pool who knew, hospitals sometimes have pools and they go with this woman and it just, you wanted to try to make it as normal as possible. As normal as possible. And his cute little friends, from preschool came to visit and we would like do races in the hallway with his wheelchair and just try to get away with whatever we could to make it feel normal. you know, and let them do normal things. And I will say something phenomenal. So if somebody is listening and they know somebody that's going through this, that maybe they could put this forward, our boys, aunts, aunt Jean.

Speaker 2: 10:48

Had done this. She had another friend that experienced, an illness. It was in the hospital. So she came in and decorated his room at that time. It was, he was really into like nights and dragons and Legos. And so she, I would say

Kara: 11:01

Ninjago, he was in the ninjago era, wasn't he? Yes, and

Speaker 2: 11:04

like gave him a, a special blanket and a special pillowcase. And then like had, Banners and blow up stuff all over his room. It was like a party in there, which was great because when you're in the hospital and you don't feel good and people are asking you to do things you don't want to do, you don't like it. and so he would want to kick and punch everybody that would come near him. But at least what it did is people would say, instead of the first question, they normally say, how are you feeling today? What hurts like any doctor, nurse, anybody that comes them. They would start talking about his room and they had like inflatable swords and so they would use those and so it really helped defer or deflect some of that, to make it seem like, okay, I, instead of being in a stark white room. room with lots of beeps and noises and people just trampling in and out. it gave that opportunity for a different discussion or to ask questions in a different way than just walking in straight up five year old. How are you feeling?

Kara: 12:05

Yeah. It's funny as you say that, I'm like, Oh my gosh, that just happened to us in a different way. But, I was telling you before we recorded that we just came off of a hospitalization. For infection after surgery for the surgery prep, my son really wanted to dye his hair green. Like he like was passionate about this. Like he, it was the kind of passion that I just don't get a lot from Levi. And so I'm like, I gotta make this happen. So we did. I bleached his hair and then I dyed it like cowabunga. green And so that's a conversation starter note to self. So There's this, you know, kid, Levi, beaming with green hair in the hospital. And so I feel like everybody would come in and ask about the hair.

Speaker: 12:44

And you get a lot of positive attention for the hair and like, not related to any of the stuff that he was there for, like not related to what he likes to do. And all these questions that just get really, really old after a while. This particular conversation didn't get as old. It was kind of an opportunity to highlight, yeah, he's passionate about this and greens is his power color and all this and that. So I can't say that it was intentional, but I can relate to what you're saying about like this was a good thing that looking back we would, you know, I would do again, although because he now wants to keep his hair green, I'm like, Oh, I don't know about that.

Wendy: 13:17

I have to ask you then that's funny that you said green because I was thinking in my head this story and I was like, well, I don't know if I'll say this, but of course now I'm going to, because you brought it up. So my hair, those of you that are listening, don't see, I really dark hair, naturally dark hair. And so at that time, I actually had purple underneath my hair. So it just, it was a little bit like you could see it, but you couldn't see it. And, when we went to see the neurosurgeon a couple of times, Before the surgery, we were in his like big fancy office, not just like the doctor's office, but like the big fancy one at the top of the hospital with the big windows. And, we, we brought his auntie with us, to help take notes. And I had like a big messy bun cause you're just a wreck. And I guess the light was hitting. So he's talking about really serious things, right? Like this is. Brain tumor and cancerous. And what we don't at that point, we didn't know that yet, but here we are. And this is what's going to happen. And then he pauses and he goes, is your hair purple? And I was like, oh my gosh, can we please stay focused here? Then I had to take a shower in the other. hospital as you do when you're staying there for multiple, multiple days. And I started getting, I had to like bring my own towel cause I like didn't want to get purple on their stuff. So I don't know if you had to wash Levi's hair while you were there, but I didn't know if green made up.

Kara: 14:34

Oh my gosh. There was green everywhere. It was everywhere. The pillows, it was, it was everywhere. And I was like, wow, you're really kind. I'm like hospital. towels are fair game. I use them to mop the floor. I use them for everything in there. And my guess is 40 days later, you weren't as conscious about those towels.

Wendy: 14:53

No, I think there's probably purple in their grout still, but I did my best. Oh, that's hilarious.

Kara: 15:00

okay. Green power color. Now we know your power color is purple. And, that's really funny. Okay. So fast forward, you and I have been at this for a little bit now. And so, actually, I want to go back even to kind of give a quick snapshot of what you do professionally, kind of what you did before this and how it has impacted what you do. And then we're going to come back to like, okay, now where you and I find ourselves with these, teenagers, kind of in this, like, They're not little anymore, but they're not like, well, my son's big physically, but not, he's not a, you know, he's not an adult. So before we go there, it's a little teaser for y'all. You started off as a teacher, so you had, you were fully trained as a teacher, correct me if I'm wrong, but you made the jump right into special education and that's where you started before even becoming a mom or how did your career progress?

Wendy: 15:57

Yes. Yeah. So I, went straight to college, thought I was going to be a social studies teacher in high school. That was in my head. Actually. No, I take that back. I thought I was going to be a kindergarten teacher. and then the first couple of weeks they in college, your first course, like introduction to teaching or whatever that was, they sent you to observe. It was a pre kindergarten, kindergarten split. They put me in for a day and when I got back on the bus to come back to campus, I said, I need to go to the registrar's office. I need to do secondary ed. I do not think elementary ed is for me. I have now taught elementary ed and adore it. But at that time, I really was like, Whoa. Okay. So, my undergrad was in regular ed secondary, or social sciences. And psychology, but I never taught a day of regular in my life. right before the school year started, I got a call. Do you want to be a long term sub at this high school, which is right down the street. Sure. I didn't think to ask questions, because I was just excited to like start this journey of what could be. And I walk in there like, Oh, you're going to be self contained special ed. Some of those kids have our juvenile delinquents with parole officers. And I was like, Okay, let's do this. And so, I did it and I loved it. I actually really loved it. People always look at me and say, did you really? And I did. I love that every day was different. I love that I really connected with these kids and they really just wanted to try to get on the right path. but I was not much older than them, quite honestly. But I loved it. And so the school district was like, We can create this position for you. You would just need to pursue a special education degree. So I went ahead and got my master's in special ed, was teaching special ed, started having kids. and with our first, I decided to tutor, leave the classroom and tutor just for grocery money. And then we had our second, before we even knew What his path was going to look like for us. The phone kept ringing. My husband said, well, you should just make a business. So I didn't go to school for business, but here we are. I have learning essentials, which we are all a team of special educators that are certified in special ed and hold either a master's or doctorate. And I knew that's really where I. Wanted to be. I wanted to help families bridge those learning gaps and access special education services. And then this happened with my son. And I say this story a lot in the sense that when I knew I needed to go in to get support for my son, I thought, okay, I know the lingo. I know the paperwork, I know the process, I know what to ask for. I know what it's going to look like. Not a problem. And it was so hard because you're coming as a parent from fear and love. And so that really ignited the passion for what I do. I then became a certified educational therapist to really support families in that way of, you know, being that collaborator on their team with other folks. Yeah. That are part of their team, whether that's in the classroom or outside of the classroom and helping them navigate this world of special education and navigating the world of IEPs. Because if somebody that has a master's in special ed found it hard and overwhelming parents that don't even have, you know, don't necessarily even know what IEP means at first. And so really helping families navigate that and then helping them, you know, be that quarterback because. Oftentimes we have a medical team and what I found is that the medical team and the educational team don't always collaborate. They act as a silo of, you know, the medical team will say, Oh, ask for this.

Speaker 2: 19:38

And the, you know, the educational team will say, well, no, we're not providing that. And so really becoming that collaborator for a family, to navigate this world, because it's very overwhelming. It's exhausting. Like you just came off of a hospital stay. You're exhausted. You're mentally exhausted. You're physically exhausted. You're with your baby, but then you also have other babies and you have a home and you have a partner and you have a job. And so helping somebody navigate this process is incredibly important for me.

Kara: 20:13

Yeah. And I want to highlight this part just because it applies so much to where I'm at. And I mentioned a little bit before we started recording is. The medical teams and the education teams operating in such distinct silos and me and my husband

Wendy: 20:30

Not necessarily intentionally, not trying to No,

Kara: 20:32

not at all. They have different expertise, right? And like our system's not designed to cross mingle, right? And even actually the opposite of that, right? It's designed to not cross mingle, you know, for privacy reasons. And so my husband and I are the what's the word I'm looking for? there's a great word for this, but I'm not thinking of it, but basically we're in the middle and we're the people that the conduit of information. So what we communicate to, it was for in our situation, it's more communicating the medical to education, as opposed to like, you know, medical is not really very interested in how well Levi's doing in math, but

Wendy: 21:10

also interpreting what that medical impact looks like in an educational classroom.

Kara: 21:15

Exactly. Even just as something as simple as like, so Levi missed, you know, the last month he's missed over 10 days of school. It's a lot of school for a high schooler, a high schooler that's already struggling to keep up in terms of like getting his work completed and all of that. And so, one of his teachers messaged, with an email and I, I appreciate the proactivity that she had, but it was like, here, go do all these things. And to me, it was like, okay, I'm pretty sure you've never lived in the hospital because

Wendy: 21:53

there's no homework happening.

Kara: 21:56

And actually, my husband, he is actually in education and he'd got a little bit done. He made, he and Levi made this really cool physics mobile. However, I think between my areas of strength and weakness, and Levi's areas of strength and weakness in school, I really honestly have a very hard time engaging in being the person to help him do all the schoolwork. Like it just is not, I think I have some, some work to do there in terms of kind of sorting that out, but I had to really kind of talk myself through like, it's okay If we send our kid back to school, not having done any of this work, probably have to have a conversation with the team, like saying, Hey, okay, how are we going to pick this up from where we left off? Because this is where we're at. and then I was wondering, like, how does this work actually like with somebody in terms of somebody that is diploma bound when there is these, these huge medical gaps, you know, What happens in this situation?

Wendy: 22:55

Think there's a conversation to be had about what is nice to know and what is needed to know from the teacher, because there are times where students are given an assignment that not necessarily is required of that curriculum. I know in high school, you're now earning credits and you have to pass state standards in order to graduate, but what is nice to know for him and what is needed to know? And can we just focus on what is needed to know and how can we chunk this out that he's going to work on it and he's going to get it there, but it's not going to be.

Speaker 2: 23:33

A in the hospital, and it may be if down the road at some point, and maybe it may be in the summer when we do some recovery, but in the hospital, that's fantastic that you guys got some stuff done, but it is just, it's overwhelming. It's loud. There's people constantly in and out and you're just trying to make it through the day and hopefully get your teeth brushed.

Kara: 23:59

Exactly. Precisely. 50 percent successful.

Wendy: 24:04

And before we recorded, we were laughing and it's true because it's, you know, the team does rounds at six in the morning and you're like wiping sleep out of your eyes and taking out your mouth guard and trying to find your glasses and be present. I was giving, I was giving Wendy this picture of the little resident,

Kara: 24:22

the little resident coming in, like, seriously, like, do you have to stand two feet from my bed? Like, give me a little space here, bro. And of me, like, trying to take my mouth guard out, like, behind my cover so he didn't see it, like, as closely as one should not ever see it. it was just, it was just hilarious. I'm like, do I really, do I care what this particular resident thinks? Not really. It's just, I think it's a hilarious picture that, like, he's like, wow, I really, really, he really has a sleeping situation with her. Face mask and everything,

Wendy: 24:54

everything. I'm sure they see it all, but it is, it's a lot, you know, and it's usually not just one resident. There's usually a herd of them coming in. If it's a learning hospital. Yeah. Yeah. You just are like, hi, everyone. Here I am.

Kara: 25:08

Yeah. it would be funny to write like a, a little like. Not a joke book, but like a little like, ensemble of like little short stories of like these funny moments that you find yourself in the hospital. Moving on from hospital life and talk and kind of looking at that part. Cause I think not everybody that has a disabled child has all the medical stuff, right? But I think that, and I, like I mentioned, are in the situation where. Our kids are at that point where the idea of independence is on the horizon because their peers are approaching that in both of our cases, siblings, yeah, exactly, are approaching that. And so the wording that we actually had talked about before is like shifting from a director to a collaborator. And there's this. I don't know if it's a pivot as much as maybe sometimes a partnership, but I guess I'm finding myself in this place of, I don't really know what's going to happen next, which has always been okay for me. I've always been able to land at like, that's okay. I'll prepare for, having Levi be non independent, forever. I have a great plan for that. And if he is independent, that's great too. Now that I'm saying that. I'm probably more comfortable with him being not independent because I have the illusion of safety that I can protect him, that I know his meds will be managed versus him actually having that independence. So now it's like, Oh, interesting how I might need to have some work to do. In terms of, I guess maybe it would be not holding him back because if you think about it, like subconsciously, if I'm like, I'm not okay. If you're independent, then like very predictable that like, I'm not going to set him up to be, independent. So what are you noticing of yourself as you're kind of in this transition phase?

Wendy: 27:09

It's a great. Thing for us to discuss because it is very much when they're little, you are the director in terms of, you know, we're going to eat, you're going to give choices, you know, all those good parenting things, but you kind of have this control and gosh, you could actually physically pick them up if you needed

Kara: 27:27

I miss those days

Wendy: 27:29

and take them somewhere. to this, You know, letting go, so there's this woman I recorded with, her name's Annie Tolkien. We had talked about her too. She's accessible college, but she uses this term called shadow work. And what she refers to is kind of slowly releasing independence. But then recognizing how much shadow work we do as parents, because we know that there's a lot of conversation in schools about transition, transition to the next year, transition beyond post secondary, you know, what are our choices? What are the resources? But if it's, you know, getting your homework in the binder to turn in or whatever, what shadow work are you doing as a parent? Are you setting reminders? You know, what,

Speaker 2: 28:15

organizational tools did you set up? if it's, you know, making your own dinner, what shadow work have you let up to that? So starting the process of thinking about what independence could look like, and you're absolutely right. It's. It's really scary. And I think that's, a point to honor that you made in terms of if our babies stay with us, we have some sort of control over safety and that fear of letting them out in the world is super scary, especially with our vulnerable kiddos. and so I think as my role in learning essentials, I've had a lot of these conversations with parents. But now also reflecting as a parent myself, and sending just even my oldest off to college this year. And, you know, some kids you think, oh, they're ready and you feel comfortable, but then, you know, then you're, they're out of your hands, right. Are out of your control. Not that they're ever in your full control, but I think thinking about where do you see them accomplishing things. And the short term the interim and long term and really start thinking about the basic things of just self care, and medication management and what would that look like for independence and really work on one thing, to get them to that independence. And I'm talking here, I'm thinking about what we've done just even with our son in terms of. Being aware of what assignments are due, which parents are listening. And they're like, yeah, I'm, that seems pretty easy. That's not really far. That's a big gap between turning in assignments and being fully independent. But kind of just starting a little program that sounds like such a weird word to say when you're talking about your kid, but just setting up some sort of system for them to build that capacity and to build that independence. And even just with med management, looking at, you know, what is out there. I've seen just, just even, you know, on like your social feed about systems that will like dispense the medication and then notify you if you've take the medication. And so just looking at what's available to build that capacity and what makes most sense. And every kid is so different. I always say like, our kids are Kids are, you know, people say, Oh, your kids, they have to be all the same. I'm like, they're not even in the same chapter of the book. They're like on different shelves, different categories of the library. So what works for one is not working for the other one. And what one needs is not necessarily what the other one needs. But I think if we reflect on the shadow work that we are doing to support our students and then our children, I should say, and then really prioritizing short term, what do we want to like, See what they can be fully independent of. And sometimes I get surprised quite honestly, sometimes I'm like, Oh wow, you really are independent on that. And that's quite impressive, but it's a fear just because we've been with our little ones through this scary experience. And we're still kind of walking that path with them to then think, Oh, they're going to be, you know, Driving or living independently and how are they paying bills and how are they, you know, even just managing money and stuff like that. So kind of finding that identifying that and then starting with small steps. To then see where it goes, and I think that will then lead us to the next step, but also with kids, we kind of try to find that sweet spot to of even in the world of academics and in just home and parenting of how far can I push them so that they're going to grow, but I'm not going to push them off the cliff. Not the literal cliff, but you know what I'm saying, like, where is that sweet spot between this is super easy and this is very frustrating and how can we navigate that and I think that's, a place to start.

Speaker: 32:22

Yeah. Like for instance, my particular story and situation, it's like, maybe, focusing on some of the things like schoolwork and school management, as opposed to medication, right? One's life critical, one's not. So, one I'm willing to have fail, one I am not. And so what I'm noticing as you're talking is, wow, I feel like independence feels so far away for my son. Yeah. And So then it can kind of be like, well, what's the point? Why work so hard to get a little bit of independence when the whole picture of independence is, so elusive.

Wendy: 33:03

Is there a deadline for independence though? And what does independence look like? Like, you know, for my son, he very much wants to be independent and there's things that he wants to do and accomplish, which is great. And some I'm holding my breath on, and I'm not sure what that will look like. you know, driving, for example, sounds really scary. And so for us, we've. and I think we've kind of started thinking about having this conversation. We've kind of alluded to it, but in order to do something big like that, what are, I need to see independence on these other things. But I think given that autonomy and back to that kind of collaborative nature with our kids and being very honest about it and hearing what they want and say, okay, well, in order for us to get to this point. And not in a manipulative way at all. I mean, a really genuine, honest conversation of like, I hear this looks great, but in order to get to Z, we've got a lot of steps to do. And I think it's also with just our, you know, our typical kids too, right? Of like, you want to go to college or you want to go, you know, to trade school. What does that look like? What are the steps that need to happen? And I think for some of our students and our kids, we even have to break down like a step to like four sub steps. And I think it's hard as a parent because of just everything we've been saying. And you have other kids in the home and a house and job and, and, you know, a spouse and pets or whatever, but like to kind of, I always find walking helpful and to kind of just try to clear some space to help organize what should be our next step, sometimes helps.

Speaker 2: 34:47

Thanks. Yeah.

Kara: 34:50

Well, I think to your point, really focusing on small steps, sub steps, you know, one of, one of four sub steps to like the one big step. And that's kind of where I go back to, okay, it all feels overwhelming if I look at it all at one time and it sometimes is really helpful and freeing to focus on just one, one small step. And here's the other part that I'm like, okay, and there's no place to get to. necessarily, right? Like, oh, we have to go to college or we have to do this. Like, that's kind of where I think we are programmed as Americans. And then our kids totally blow up that idea. And We recognize, okay,

Wendy: 35:32

let's just get through freshman year of high school. Yeah. Right. Well, let's just get through the summer, the week. Sometimes it's like, let's just make it through the day.

Kara: 35:39

Yeah, exactly.

Wendy: 35:40

I feel like our society. Does put this external pressure at least in our community where we live is, you know, what school would this, but it doesn't have to be that. I really feel like there's no timeline on independence. Like great. If you are able to pay a bill independently by You know, late thirties. All right. You know, whatever it is, I'm just making up stuff, but I, you know, I think it's just really kind of trying. I think what I learned from my experience with my son is to slow it all down. Cause when you're in that timeframe of a surgery or hospital stay, that's all you have to focus on. And it is very easy to have the what ifs, but if we just slow it down and prioritize. What can we get accomplished? And what are the subsets? You know, I've worked with families in terms of just my, you know, they say, Oh, I thought my kid knew how to take a shower. It's pretty basic. And I've worked with them of like, let's get a clear shower curtain.

Speaker 2: 36:43

Let's laminate, you know, let's get a, laminate the steps and show them. Here's a picture of shampoo, label it. Conditioner and then so for whatever the process is, and then put a mirror in the shower so they can see it. And then, you know, I've had parents like with a non clear shower curtains with their childhood privacy, but like put a video in around the shower curtains area. This is next step and then building that capacity. So I think sometimes that is independence, right? What is independent like? Well, maybe it's showering independently. Then that's success. Like you now know how to take a shower. Okay, so then can we, work on, you know, do we know how to brush our hair and put our deodorant on? Like what are our, those shift for each child's needs? Yeah,

Speaker: 37:34

there's so many like micro opportunities for independence and again back to kind of how well for me my experiences that can feel overwhelming all if I think about it all at one time one slow down like you're saying also like de emphasize having to have it right like having to have independence and I just kind of picture this gripping or holding on to That can end up feeling very, desperate and usually when us humans are in desperate situations like we're not the best, we don't show up as, what makes us feel the best and usually other people around us get the byproduct of that and really holding it with loose hands. So like showing up, relating to your child as whole and capable. And having those microsteps of independence and yet not prioritizing them over, other value, that your kid can have as just who they are, not because of what they do. So I don't know, it's so individual. Yes. Because all of our kids have such unique abilities and disabilities. and given all those, and this is for every child, right? Given how all those come together, it really requires like a very individual approach for any child. And then our disabled kids just really, they really have us show up at a high level to try to support them with, you know, with everything that they deserve.

Speaker 2: 39:02

And it's also easier said than done.

Speaker: 39:05

It is. This is why we need a tribe. This is why we need community because I feel like, you know, even just in this conversation today, me being like, Whoa, this overwhelms me. This gets me a little like, Oh my gosh, it's too much. I want to run away. which I just think saying that out loud and being honest about things is. Yeah. In and of itself helpful. So am I going to run away? No, I'm not going to run away. I know I'm not. But do I feel like it sometimes? Yes, I do. And having, you know, humans smiling back and being like, yeah, that makes sense. I get it. I've felt like that too. It's just really helpful. So thank you for being that human on the other side of the screen today. Smiling back, making me feel like, okay, we're going to do this. We got this. We're going to figure this out on how to show up as the mothers we want to be to these children.

Wendy: 39:50

Yeah. And no day is going to be perfect. And giving yourself grace to say that yes, it's okay to cry. It's okay to scream. It's okay to go on a walk or go get that, you know, lovely cookie down the street at the bakery, whatever it is, just one day at a time. It's going to happen It's going to happen no matter what.

Kara: 40:11

Something's going to happen. Something's going to happen. Exactly. What we know is something's going to happen.

Wendy: 40:18

That was my profound statement of the day. Something's going to happen.

Kara: 40:22

I was listening to, I think it was an SNL skit. Oh, dog. I don't know what it is, but I heard it on Instagram last night. And it was a skit where this guy, I don't know his name. It was like, fix it. And the interviewer was like, what are you going to fix? Fix it. And he kept saying it over and over again. It was just so funny because it was so vague. And the interview was trying to be like, well, what are you fixing? He's like, just fix it. It went on so long. You're like, yeah, just fit. It was just, I don't know. It was just, it was funny. I'm sure a lot of like, is it, was it on Schitt's Creek where they're like, she's just like fold the cheese. You just know it wasn't that, but that was hilarious. I want to watch that show. I did

Wendy: 40:55

that. That was similar to that. That just reminded me of it.

Kara: 40:58

That's so funny. Well, Wendy, I'm so glad that we met in the way that we did.

Wendy: 41:06

You as well. The universe put us together. Yes. Hopefully, somebody gleans a little slice of something out of our conversation. My profound word, something, something's going to happen. You're going to glean something, but you have to believe it's all going to work out and we're going to take one little step at a time and those might be teeny tiny micro steps, but

Kara: 41:25

yeah

Wendy: 41:26

going to get there.

Kara: 41:28

Even if it's just that grace that you mentioned at the end there, even if that's the only thing we accomplished is just having grace. I think that's enough

Wendy: 41:35

and love our little ones.

Kara: 41:38

Yes. Okay. Well, here you go. We'll see you all on the next episode of The Special Need's Mom podcast.

Wendy: 41:45

Thank you.