Wednesday, April 17, 2024

Episode #73: Navigating Mobility Challenges: From Childhood to Coaching

Mobility Challenges Won't Stop Nathan Gutierrez!
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Mobility Challenges Won’t Stop Nathan Gutierrez!

Show Notes:

In this insightful interview, we sit down with Nathan Gutierrez, a remarkable individual with spina bifida, to delve into his journey of living with a mobility disability. Nathan’s candid sharing takes us through his childhood experiences, family support, education, healthcare insights, and his inspiring path to independence. Join us as we explore his triumphs over challenges, his engagement in sports and social activities, and his valuable advice for parents and individuals facing similar situations.

🔹 Childhood and Family Support: Discover how Nathan’s parents nurtured his independence from a young age, empowering him to overcome obstacles and actively participate in daily life.

🔹 Educational Experiences: Gain insights into Nathan’s education within mainstream schools, his perspective on effective communication, and the significance of self-advocacy and Individualized Education Programs (IEPs).

🔹 Healthcare and Transition to Adulthood: Learn about Nathan’s proactive approach to maintaining bladder health and preventing urinary tract infections (UTIs). Explore his journey from childhood to adulthood and the importance of gradually involving children in their healthcare routines.

🔹 Sports and Social Life: Dive into Nathan’s engaging experiences with wheelchair basketball, youth sports, and coaching programs. Discover how these activities not only contributed to his physical well-being but also enriched his social interactions and self-confidence.

🔹 Tips for Parents and Individuals: Nathan shares invaluable advice for parents, emphasizing the significance of promoting independence, creative problem-solving, and collaborative approaches to managing mobility challenges.

🔹 Wheel Life Coaching: Nathan’s latest venture, “Wheel Life Coaching,” is dedicated to helping individuals and families with mobility disabilities navigate their unique journeys. Learn how Nathan’s coaching aims to simplify information, provide tailored solutions, and empower individuals to achieve their aspirations.

Join us for this enlightening conversation, as Nathan’s story reminds us of the power of determination, family support, and the unwavering spirit to thrive despite life’s challenges. Don’t miss out on this heartwarming and informative discussion – watch now!

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Connect with Nathan:

Connect with Us: https://linktr.ee/waterprairie

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Music Used:

“LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/

Artist: http://audionautix.com/


Meet Today’s Guest:

 

Nathan M. Gutierrez, Founder and CEO of Wheel Life Enterprises, was born with Spina Bifida and uses a wheelchair for mobility. He overcame kidney failure, became a youth sports nonprofit leader, worked in local government, and was nationally recognized for his work. Nathan is a Certified Corporate Speaker, Board Certified Clinical Hypnotherapist, and Life & Success Coach, committed to empowering individuals with disabilities to become more independent and develop a plan for their future.

 

 


Episode #73: Navigating Mobility Challenges: From Childhood to Coaching

Mobility Challenges Won’t Stop Nathan Gutierrez!

(Recorded July 29, 2023)

Full Transcript of Interview:

Tonya: So, Nathan, welcome to Water Prairie.

Nathan: Thank you for having me. I’m glad to be here.

We’re going to be talking today about your journey with Spina Bifida and some of the things that you’re doing. But with all of my guests this season, I’ve been playing a game called Two Truths and a Lie. And, um, listeners, if you haven’t been listening to other episodes, your job in this is to listen to Nathan’s facts that he’s going to share with us.

And I say facts or pseudo-facts because one of them will not be true. And, um, if you’re watching on YouTube, you can post your guess in the comments. If not, then go to Instagram and Twitter and look for the post that matches this episode, and place your guess at the bottom of that post. And a week after we release this, we’ll come back and we’ll put the answer so that you can check your work and see, see how you did.

So Nathan, would you be willing to share three facts with us about yourself or pseudo-facts that is?

Uh, first one is, uh, I played in the national wheelchair basketball association championship game. I’ve also been a two-time TEDx speaker. And the third one is I spoke to the White House, U. S. Department of Labor.

Wow. Wow. I’m pretty impressed with all three of those. So, we’re going to have to see which two are true, and which one is false. Um, so anyway, post your guesses, um, after you listen to this episode, of course, so finish listening first and then, then go and post your guess.

You might get some, uh, some tips to what the actual answer is. If you listen through all of it too, we’ll, we’ll see how our conversation goes. Well, last week we featured, um, Melissa Ortiz. She was talking about her journey with spina bifida and, um, her personal story there, and I’ve asked Nathan to come on because I wanted to continue the conversation a little bit more.

And for our parents who have children who have a diagnosis of spina bifida, I thought this would be really good, um, to help me understand it more, but to help them also get a better perspective of, um, some of the stories of adults who have, have gone on and what they’re doing with their lives today. So, um, so Nathan has agreed to come and talk to us some, and, um, Nathan, I wanted to ask you if you could, would you share with us a little bit about kind of how things got started?

Did your, did your parents know before you were born? Or was this something that was after you were born? How did, how did they first find out that you had spina bifida?

Well, it was a complete surprise to them. Uh, we’re talking 40 years ago, first of all, back in 1983. So, they don’t have the, they didn’t have the technology that they have now to diagnose, uh, different conditions and disabilities.

So, um, it was, like I said, I was born and, uh, I’m screaming as any normal baby does and when they realized that my arms were, were moving but my legs weren’t, they immediately turned me over onto my stomach and they saw about a quarter sized, uh, hole in my spine at the L1 level and the nerves were exposed and they knew immediately that I had spina bifida and it was at that point that they told my, my parents that, hey, you know, he’s never going to walk, he’s never going to talk, he’s never going to have a, any sort of quality of life.

So, it’s your decision on what you want to do, but we highly recommend that you, you probably give him up. And, you know, fortunately, my parents didn’t listen, and, uh, in fact, my mom was very offended, because here I was just born, and it was supposed to be the happiest moment of their life, and within minutes, they were saying, well, you know, he’s, he’s not going to be anything worth saving. So, you know, if you want to move on with your life, that’s okay, you can put them up for adoption.

And I’m so thankful every day that my parents decided to keep me and to raise me as I am. And then, looking back, well, my doctors were wrong. So, they were only wrong about one thing, and that was that I was never going to walk. Technically, that’s not even completely true because I did walk a few times in my life with the help of braces.

But then I realized that that was more challenging than being in a wheelchair. So I’ve just managed in, uh, to be in a wheelchair for most of my life and it’s, it’s made me the happiest because I’m mobile and able to do whatever I need to do using my chair.

Right. So, I’m trying to wrap my brain around a doctor telling your parents, do you want to just give him up? I mean, I, as, as a mom, I can’t even comprehend that. I’m just, so, so what would their answer have been that you would have been adopted by a family or put into an institution? What would they have done had your parents said?

Yeah. They said, they told my parents that I wouldn’t have any quality of life. I wouldn’t walk, I wouldn’t talk. And I would have a lot of challenges. That they would have to basically take care of me the rest of their life. And that there was really no way for me to ever be independent or successful in my life.

Well, then the other part of that statement that doesn’t click with me, I, I have MS. So I understand some of the nervous system and you know, how things connect and all. I don’t understand how. A spinal cord injury would affect your ability to talk. Does that really could, could, could that have been the outcome?

Well, it’s not the spinal part of it necessarily. It’s because I was born with hydrocephalus as well, and that’s water on the brain. Uh, and that’s connected to spina bifida more times than not. Uh, not always, but because of the, the water on the brain, the ventricles were swollen and sometimes that can cause uh, brain damage.

Okay. That, that, that does, doesn’t, I’m just, I’m just thinking, you know, if it’s just the, the spine, it wasn’t making sense on that, but that, but that I do understand because it could have caused a damage or something because of the, the pressure there I would assume.

Correct. Yeah. Well, and spina bifida does have, have its own challenges. I mean, it. You can’t walk, and there are bladder and bowel issues, which is what, you know, something I’ve dealt with most of my life, or really all my life, as most people with spina bifida do as well, uh, depending on the severity and the type of injury and where it’s located, that kind of thing. So, there are a number of factors that are involved when it comes to spina bifida.

So it’s not just the, well, they’re never going to walk again, they’re just going to be in a chair. It’s, it’s not that simple. There are a lot of other things to get taken into consideration. And then my parents were, well, when you look at today, they weren’t that young, but back then, uh, my dad was 25, my mom was 23, and I’m the firstborn.

So, you know, again, you’re looking at the, the moment of time where they’re expecting their firstborn, and me being the son, of course, they were both thrilled with that, especially my dad, being that I could carry on the family name. And then I’m born and then the doctor, within seconds of me being born and saying, Hey, there’s a problem that quickly shattered a lot of dreams, uh, in that moment.

And then for them, for the doctors to say, well, not going to be normal, so you might as well hurry and make the decision now. I mean, they hadn’t even had time to process what that even means.

Yeah.

So it was a very traumatic time for them.

Right. Interesting. Interesting. So, um, so they, so they think thankfully made the decision for you, for you to remain their son, which I, I, I’m just, I just still, still kind of reacting to, to the, to that even in being an option.

Um, did you, so, So from what I know, you have to forgive me, I don’t have a large understanding of spina bifida. Um, so I’m still figuring this out myself, but, um, but you said they were able to see, you said a quarter size section on your, on your spine. Now I, I’m imagining that it could be anywhere on the spine for a child.

So parents that are listening, it may be different, different areas because you’re saying, depending on what it would affect too.

Correct. Yes. So mine is at L1, uh, the lumbar one, uh, and that’s, you know, if you don’t know the spine, the way it’s laid out, it’s just above the tailbone.

Okay. Okay. In my, in my mind, that’s where I’ve always imagined it being. So what is the treatment that they would do? Did you have surgery right away? What did they do?

I did, so they covered the, the opening, the wound, and they rushed me into emergency surgery because they have to close that, that injury, that hole there, um, because the nerves were actually exposed. You can physically see them. And so that’s when they were able to determine, you know, where on the spine it was located, and then based upon those nerves that were damaged, they were able to determine.

What the potential outcome would be in terms of the severity of my injury. So different nerves Okay, do different things. And so, you know, there is some crossover with some of the nerves too, of course But then they were able to explain to my parents, you know down the road This is this is the side of the injury this this is what you can expect You know, and then, and then the lower on the spine it is, the less severe the injury is.

And of course, I’m talking about spinal cord injuries, too. So if anybody gets in an accident or something like that, depending on where that happened on the spine will determine the type of injury and the severity of it. The other thing is that you have two different types of nerves. You have motor nerves and you have sensory nerves.

And they’re exactly what they sound like. So the motor nerves are what help you with the movement, you know, your arms, your legs, whatever. The sensory nerves are, again, exactly what they sound like. Those are what allow you to feel. So, for instance, I had a friend growing up who didn’t have sensory nerve, or he had sensory nerve damage, but he, and he had spina bifida just like me, but it was lower on his spine, and the motor nerves were okay, but the sensory nerves were damaged.

So he could be in his chair, But he can kick his, his knees up and down, but he couldn’t feel. So it’s, it’s a very complex situation at times.

Interesting. Interesting. Yeah. I mean, having a mass, the nervous system itself has just, it, I’m always intrigued with it and just how our body and our brain works with it.

And learn sometimes to compensate with some damage, but not all damage to it. So it’s, um, it’s always, uh, uh, uh, an intriguing area for me to, to learn more about. So as a, so as an infant, you had the surgery. Did you have to have any other surgeries later as you were growing? Or was it just one and done early on?

For that one, it was just one and done, fortunately. A few months down the road, I think I was about three months old, they had to deal with the water on the brain, the hydrocephalus. So what they had to do is, um, they went in and they put a shunt, and in fact I still have it, it’s right here, I can feel it.

Uh, and what that does is it, it pulled all the water out of my brain, and then they wrapped a coil all the way down the back of my ear here, all the way into my stomach. And then when I was, because I was so small as an infant, uh, they coiled it up into my stomach, which would allow it to, to unravel as I grew.

And then at, at some point, and I can’t tell you when, I got tall enough, I guess you could say, to where the, the tube physically broke off the shunt and fell into my stomach. I don’t know when it happened. There was nothing that I felt. There wasn’t an emergency situation. Who knows? In fact, we just discovered it when I went in and had some x rays done.

And you could just see this tubing in my stomach that nobody could figure out what it was or where it came from and it was the whole thing. And it was just sealed up against my stomach lining. And so we finally figured it out that, oh, it’s, it’s the shunt tubing. And that’s when we discovered that it was no longer connected to the shunt in my head.

Um, fortunately, I’ve never had any revisions or issues with the shunt. I have known people who’ve had revisions or trouble with the shunt and have had to go in and have major brain surgery, because that’s what it is, and have the shunt either cleaned out and then, you know, their head put back together, or they’ve had to have the shunt removed completely and then replaced with a new one.

And that, that’s a pretty serious issue. But fortunately, I’ve never had that happen in my life. And now, like I said, the shunt doesn’t work. Because it’s not even connected.

So, so for you, it did, it, it’s resolved itself pretty much. You don’t, you’re not getting the fluid now that you, that you had when you were younger.

No, I, I mean, as far as I know, no. And I, I’ve had CAT scans several times in my life and there have no, been no indications of that ever occurring.

You said that you used braces for a, for a time when you were in school, were you using braces at any of that time or were you in the wheelchair at that by then?

Well, going to school, I was in the chair full time. When I was three, I want to say, is when I had my first pair of braces. And I might have worn them to school a little bit, but I, and I had a walker. I do recall this, but I don’t remember using them that often. It was always the chair. I think I would stand up and walk a little bit with the walker, but it was very cumbersome.

Uh, because they were literally almost full-body. I mean, they were up to my chest in order for me to walk and it was kind of a waddle. I’d have to throw my hips and everything to move step by step. Uh, so that was when I was three and then I went back and had another surgery to, uh, release, uh, behind my knees and behind my, and my heel cords, uh, when I was about, 7, 7 or 8, um, in order to get a new pair of braces.

And I was very reluctant at the time. Uh, I had a doctor, an orthopedic doctor who really pushed me into it. Um, you know, I, I had several people who, who told me that That was really going to be the only way that I was probably going to be successful was that if I could Stand up and walk because that’s how society functioned now We’re talking about pre-ADA here, and I just mentioned that because this last week We celebrated the 33rd anniversary with the Americans with Disabilities Act.

So we’re talking the late 80s here So just shortly before that when things weren’t as accessible as they are today And there was that real fear from family and friends Uh, who thought that, well, if, if I wasn’t able to walk, how was I going to be able to function in a very inaccessible society?

Yeah. Yeah. And it’s, it’s one of those things that, you know, thinking back now, it’s, it’s hard to remember sometimes how much has changed in that amount of time. I do want to hear a little bit about your, your childhood experiences. Um, so you’re, you’re in the wheelchair, accessing, accessing, accessing school, I can’t talk today. Um, did, did you find it, um, easy to make friends? Did you have, you know, like, I’m thinking as, as you’re getting older, maybe into older elementary school, even, um, were you involved, involved in any school clubs or sports or any programs that were going on?

Well, up until first grade, I was strictly in special education, uh, again, because there weren’t that many programs for people who could potentially move into mainstream education at that time, a lot of things were still being going on. Figured out and determined at that time. Uh, much, there was a lot of improvement by that time compared to previous generations.

Some of my friends who were, who were older, they had to deal with a lot more challenges. And I, I thank God that they were able to help pave the way for me to be able to eventually move into mainstream. But up until first grade, it was strictly special education. Uh, starting first grade, I was able to do half day, so I did.

The morning half in special education and in the second half of the day I was able to move into mainstream education. Second grade on, I was able to be fully mainstreamed and from that point through about sixth grade, uh, to answer your question, I, I had a lot of friends. Uh, I was not just the kid in the wheelchair that they saw in their class or out at recess.

I was Nathan, uh, who just happened to have a disability and be in a chair and… A lot of them wanted to push me, and a lot of them tried, but we had to set some ground rules at the beginning of every school year. My mom would bring our two little miniature schnauzers that we had at the time, and you know, we’d visit the class, and we’d show the dogs, and then we’d talk about me and say, Hey, look.

This is Nathan. This is his wheelchair. He uses this to get around as much as your legs get you around. And, uh, it’s important for you to know that you don’t touch the chair unless Nathan says it’s okay. Because it can be very dangerous for him if, if, you know, he were to fall over or something like that.

You know, we had to set those ground rules and those expectations that I was able to do most things on my own, but if there ever were a time that I needed some assistance, I would ask one of the kids, or I would ask an adult, a teacher most of the time, that, you know, who would be more capable of helping me?

And the kids were really good about it. I’d go out to recess, and we’d play basketball together, and… You know, I didn’t have the physical arm strength to shoot on the regular 10-foot-tall hoops, but they always included me. So that was, that was a lot of fun. And, and in fact, as of today, at 40, I’m still friends with a lot of those people.

So, you know, it really helped establish my foundation in getting connected with people in the non-disabled world, so to speak. Junior high is where things started to get tough and we’re talking socially, we’re talking academically. Um, I didn’t do so well academically in junior high and it was because I was really trying to focus on being more social and looking back.

It was not the best choice, but you know when you’re 12 13 years old that’s the most important part of your life and Yep, I almost paid the price for it. In fact in seventh grade. I was elected to the student body government I was the only seventh grader and I was the only boy so pretty exciting time in a young, uh, young boy’s life to be hanging around some older girls.

And, uh, you know, they were cute. And, uh, became friends with them. But it almost cost me, academically speaking, because I wasn’t doing well and I was falling below the performance levels that were expected of me. And the principal called me in. The, um, head of the, um, the department for, uh, You know, special needs came in and they said, Hey, you know, we really like you, but we’re, we’re having these problems here and you need to shore your academic performance up.

Otherwise you’re gonna have to be removed. And, you know, we’re, we’re trying to treat you kindly and we’re trying to help you out here. But, you know, we don’t know, you know, We don’t know if this is going to work out for you. But we want you to also know that we’re trying to help you save face. We don’t want to embarrass you or anything like that.

In fact, that principal was awesome. Um, the, the woman who was the head of the special education department in that district was great. In fact, the, uh, the lady became a neighbor of mine down the road. And, uh, a couple years down the road. And then the principal was by far the best principal I’d ever had in my life.

Um, in that same meeting, believe it or not, my mom came into that meeting and said, Absolutely not. If he’s not performing well, kick him out of office. And that’s how my mom was. She was very, was and is. Um, she was very, um, she wanted to ensure that I was going to be treated. Normal like everybody else and at that time in that moment.

I don’t want to be treated normally I wanted to be treated with right You know, my social life is on the line here that if I get removed from office that’s gonna be a lot of embarrassing situations for me to deal with, with my peers. The principal ultimately did keep me in office, and looking back as an adult you probably shouldn’t have, but at the same time I am very appreciative that he gave me another chance, and I was able to graduate with my peers.

I mean, I didn’t fall so far behind that I was in danger of not graduating or anything, but I did struggle enough to where there was a chance that at least I wouldn’t be able to participate in student body government anymore, but… I think I learned a lot from that experience, especially into my adulthood, that you can’t treat everybody the same, no matter what the definition of normal is, no matter what the definition of treating everybody the same, there’s so much diversity in the world that you don’t know, you know, what people are dealing with, you don’t know what their backgrounds are, you don’t know, What their feelings are, you have to take a lot of those things into account and consideration.

So, again, that’s not to say that you excuse bad behavior, or you excuse people who aren’t performing up to a certain level of expectation. But, I think we need to have more understanding of… What an individual situation may look like and not treat it like you’re grading it against a, an arbitrary rubric that everybody needs to be held to that same standard.

That’s nearly impossible to do in the first place. Um, as I moved into high school, similar situation in that, okay, now we’re going to an even bigger campus where, you know, we have getting kids from other junior high schools in, so then I had to meet new people. And, um, it was at that time and I know that You know, if you’re, if you’re parents of, uh, of teens, whether they have disabilities or not, you know what that’s, you know what that’s like.

Um, I would struggle a lot in high school, especially socially. So I was still very much struggling socially in high school. Doing my best. It got really challenging when… When a lot of my peers started getting their driver’s licenses and driving because I wasn’t there yet, and perhaps I wasn’t even mature enough to get there, but I didn’t have the resources at that point in time to even have that opportunity.

I didn’t have a car with the adaptive equipment in it. I needed to go somewhere who would, to a place that would, be able to train me on how to use those hand controls. Uh, I needed a car in the first place, which I didn’t have. So there, there were some things that I missed out on there. On top of that, there was dating.

And dating was very hard to deal with in that I was not able to participate in that. In fact, I only went to two dances the entire time I was in high school, and that was my senior formal and my senior prom. And my senior formal, I did go with a girl. And, um, uh, my parents rented a limo. And so I was able to go with her in that way, again, because I wasn’t able to drive.

And then I went to the formal, and I had my mom drop me off, but I didn’t go on a date or anything. Um, but I, I at least wanted to do that because that was my senior year. But high school was a challenge on its own, too. I, you know, I had pretty good teachers for the most part. I had a couple who were a bit challenging.

And I’m sure I was a bit of a challenge to them as well, in all fairness. Um, I did better academically, but I still wasn’t a spectacular student. And looking back now, you know, it’s one of those things that I regret that I didn’t do as well as I, I could’ve. And a lot of that was just because I was stubborn, and I was rebelling, and it just, I was being a teen.

I was being a teen with a disability. And, uh, again, that’s not what every teen goes through. It’s not what every teen with a disability goes through. So again, if you’re watching, I’m not trying to scare anybody there. Just telling you what my experience was. Um, I, I did get involved in athletics a little bit.

Uh, on my freshman year, I was the, Uh, student manager for the boys varsity team. And so I was there at all the games practices. As much as I could, at least. And then, my sophomore year, kind of interesting, Uh, I was able to be the, uh, manager, the student manager for the girls junior varsity team. I don’t know how that happened.

That was kind of a fluke, because they didn’t, as far as I know, they didn’t let any other boys be part of a girls team. Um, but I was able to do that, and that was kind of cool, again, because I’m around teenage girls, I’m a teenage boy, so hey. Uh, I did not object to that at all. And I knew all the girls. I mean, we, we were friends and, and you know, we were cool with each other, you know, nothing happened.

Um, but it was, it was fun and um, I’m not sure the coach was completely accepting of me at the time, but you know, she was in her early to mid twenties, so she was young too. She was a teacher on campus and I’ve seen her. Since then, you know, many years later, we’re, you know, we’re fine, but it was a different situation for all of us to, to get used to.

Uh, and then I, I graduated on time with my peers and, uh, was able to go across the stage. And I think that was a monumental moment in that looking back to, at least for my parents, looking back to, you know, where I came from in terms of my birth. Again, they were told that never walk it, never talk it, never make anything of myself.

And here I was graduating high school, so that was exciting for them. And then from there, I don’t know, do you want me to keep going in terms of education? Sure. Okay. Sure. Go ahead. Uh, from there, uh, I went to the junior college. Um, it was where I was able to get accepted first of all, and I’m still living at home.

And I was not thrilled about it again, because a lot of my peers were going off with scholarships to big universities away from home, and I, and I really wanted that, but I just, I didn’t have the, the tools. I didn’t have the academic tools. I didn’t have the social tools. I just, I wasn’t ready. But you know what, if we’re talking about God’s provision and God’s timing with things. I really think that was meant to be Because I was able to again stay at home and I met a professor at the junior college who was blind and He was blind from a condition that Didn’t really show up until he was in his late teens when he was about to go off to college And it turns out that he was the first blind student At that same college many, many years ago, and so he was one of my professors, uh, and he taught communications and he was a very good speaker.

And so he told me, he said, Hey, you’re in a wheelchair. That’s okay. You can learn how to communicate well. And then the wheelchair won’t matter. He goes, look at me, I’m blind, but I’ve, he traveled all over the world to speak. He appeared on Oprah. He appeared in front of the Pope. Um, he spoke to Nelson Mandela.

I mean, he, he was a celebrity in so many ways. Not world renowned in the way that everybody knew his name, uh, necessarily, but I don’t know if you’re familiar with the, the kindness movement. Uh, in the early nineties, uh, today, his, his, yeah, his quote was, today I will commit one random act of senseless kindness, will you?

So if you’ve heard that, that’s actually Dr. Chuck Wall, my, my old professor. And so, uh, it was really, really cool to learn from him. Um, in fact, he would. Stay after class a lot of days and his wife would come pick him up about an hour after you know We were all done and we’d sit in his office and he talked to me and he’d really give me encouragement he would give me life lessons and He really was one of the major influential players in 18 19 years old at the time and He’s the reason I think I’m on this podcast with you today because he’s the one who taught me How to have the courage to learn how to be a speaker, to learn to share my message, and to learn how to mentor and get other people to share their stories, so that we can create a stronger world, including people with disabilities.

Um, I can’t say enough about the man. Unfortunately, a couple years ago, he passed. He was in his 80s. But, uh, so he lived a long, full life, but I really wouldn’t be here had it not been for him. And, uh, I include him in a very small select group of people. My parents, my sister, uh, him, and maybe just a couple of others.

So he was very pivotal in my life. But from there, um, I was on the, what I call the lifetime plan at the junior college, because it seemed like I was going to be there forever. I was there about five years. Uh, four, four and a half, something like that. Yeah, and it’s a two year school, so, you know, I could have gotten there about two times.

Right, right.

Um, and again, it was adjusting to another type of education, it was going to different classes, going to a bigger campus, and now I was at the point where if I went to class or if I didn’t show up to class, nobody cared, because as long as the fee, the fees are paid, you can pass, you can fail.

Nobody’s going to hold you accountable to that. And so for me, it was great. I’m an adult. I’m going to do whatever I want to do. I learned some hard lessons there too. And again, I didn’t, I didn’t do so bad, but it took me longer, uh, than it probably should have, but again, I was just, I was learning and I was maturing and I finally got through it.

Um, as I was leaving though, as I was leaving the junior college. There was a point in time, now we’re around 2006, where I wasn’t feeling so well physically, and I didn’t know what it was, I didn’t know what was happening with me, I just knew that I was sick. And to just share a little bit of what that felt like, I would come home and…

I would just be tired all the time, I would be sick to my stomach, I couldn’t hold food down, I would go to the trash can or the bathroom and I would throw up. And this was happening daily for a few weeks. And now mind you, again, I’m in my early twenties, so I’m an adult now. And my mom, uh, my parents had divorced many, many years ago.

Before that, they divorced when I was about nine years old, but I maintained good relationships with, you know, my, my mom who was living with, my sister was living with, and my dad moved back to L. A. We were a couple hours from L. A. and he moved back down there and we, we had and still have a great relationship.

And, um, But at that time, my mom said, look, you’re an adult. You can take technically take care of yourself. And technically I can’t tell you what to do, but there’s something very wrong with you physically. And you need to go to the doctor and being a guy and being stubborn. I said, I’m fine. I’m fine, mom.

You know, don’t worry about it. I’m in school. I’m stressed out. I’m fine. Don’t worry about it. Well, she forced me to go to the doctor and she physically drove me to L. A. where my doctors were located. And she said, there’s something wrong with you. Let’s just get you checked out. So they did the blood work.

They did the, what I call the pat down test. You know, they just kind of pat you down and go, you’re fine, but we’ll take some blood. So they did a full blood panel. And about a week later or so, uh, I got a call from one of the doctors and they said, well, here’s the thing, you’re in full renal failure, which is another word for kidney.

Uh, your kidneys are shutting down and you have to go to the hospital today. And I went, oh, okay, well, and you know, that. That’s a showstopper right there. So I called my mom and she was at work and, uh, now by this time I was driving so I could really drive myself to the doctor or the hospital, but I called her and I said, Hey, um, I think I need you to come pick me up and take me to the doctor.

This is what they told me. And she goes, Oh my God. Okay, I’ll, I’ll be home. So she came home, picked me up, took me to the emergency room. They confirmed it. They said, you’re in renal failure. We have to start you on dialysis. You’re. You’re not doing well. I called my dad that night and I remember this day vividly and I know my parents do too.

I called my dad. I said, Dad, I’m not joking here. Um, I need you to come up because they’re telling me my kidneys are failing. I don’t know if you have to come get me and take me to L. A. or what, but we’ve got to do something. This is serious. So, without hesitation, he took off from work. He came and picked me up that night.

Uh, by midnight, 30 a. m. that next morning, we were in the hospital down in L. A. And, um, they were, they put me in a bed. They hooked me up to dialysis. And I was on a three year journey of dialysis, three days a week. While I was in school, about halfway through that three year period, I almost passed out on campus.

I just transferred to the university at this point in my hometown and almost passed out on campus. I went to my academic advisor and a couple of my professors and I said, look, I can’t. I want to keep doing this because I think this is helping me deal with what I’m dealing with physically. I can’t do this right now.

You know, I’ll try and come back to school, but I can’t, this is not what I need to focus on at this point. Let me tell you this moment is what helped me grow up and I was 23 This is the moment when I realized that you know what? Paralysis, the spina bifida, the hydrocephalus, the bowel and bladder issues that come with it The other things I was worried about that’s the moment when things became secondary Because there was a real chance that I may not make it I was one of the youngest people in my dialysis unit.

I was in my early 20s. I’m watching people in their 60s, 70s, and 80s, uh, not doing well. And in fact, um, kind of a spooky moment here. I’ll never forget this. Uh, Halloween 2007, I’m sitting there doing treatment, and I’m in school at the time, and I’m sitting there doing treatment that morning before class.

And a guy across from me, who was in his late 60s, dies right in front of me. And he had a heart attack. And everybody surrounded him. They’re giving him CPR. And the next thing I know, the ambulance is rushing in. They take him out, and I could see his faces. They let him out, and I knew he was gone. That scared me a lot.

And I told my parents, I said, I can’t keep doing this. I need a transplant. I need to do whatever I need to do to get the heck out of here. Because I’m not going to make it and, you know, during that time we had talked about, okay, transplant has to be the option. Uh, there was no doubt in our minds that my dad, uh, who had offered almost immediately that, hey, he was going to be my donor.

It just… You know, insurance and doctors. It takes a long time to get through that process of getting tested to make sure that we’re compatible, things of that nature. So it took a while. Um, but my dad was always committed that, Hey, I’m going to be the one to do this. You know, your mom’s taking care of you at home.

Your sister’s taking care of you at home. I’ll donate to you. And so we had some insurance battles. That’s a whole nother story. But, um. You know, he got tested and about three years after this journey started, a little less than three years, um, you know, we had the transplant. My dad gave me one of his kidneys, and that’s been 14 years ago, and we’re both doing well.

Um, he had to stop smoking. He was a, he was a smoker at the time, so he stopped. He hasn’t smoked since. Um, I’m healthy, you know, gained some weight, but that’s because of the medications, and unfortunately, that’s an unfortunate side effect, um, but I’m alive, and so it’s really neat, and this is what I tell people, my mom gave birth to me.

And my dad gave me a second chance. So it’s not every day that you have both parents who have an opportunity to, to do something for you that, you know, you know, helps you get, you know, gives birth to you and gives you like a second birth almost. Right. And, uh, I don’t take that for granted. You know, it was 14 years ago, um, in March of this year.

Wow. And since then, you know, I’ve done a lot, uh, you know, I’m talking a lot, so I, you know, I’ll let you, let you ask any follow-up questions you have.

Let’s just, again, so, well, just, just the end of the story there, just to kind of clarify that. So is renal failure, does it go along with spina bifida or was this just a fluke that, that you were facing that in addition to it?

No, that’s a good question. It, so it, it can, it can go to spina bifida. And the only reason I say that is because, you know, one of the challenges that I, I’ve had, and still have it to a lesser extent, is that the, the bladder and bowels, and of course the bladders connected to the kidneys, um, are impacted with spina bifida.

Now, to varying degrees, because there are some people walking around, I mean, you might have spina bifida, you don’t know. Uh, and so you go to the doctor and they find something. In fact, I’ve known a couple of people who are walking and talking around, you know, living life. They go to the doctor for a physical, for a job or something.

And I know one girl my mom actually worked with. And they found a spot on the, uh, exam on her x ray, I think it was an x ray, or, uh, no, maybe it was like an MRI or something. And they said, hey, have you ever been diagnosed with spina bifida? And she says, no, I don’t even know what that is. Well, she had it her entire life, and she didn’t find out if she was around 19 or 20 years old.

So, in my case, it was obvious, and if you see me, you know, I’m in a chair, you know, there, you know there’s something there. Um, but there are people who are walking around today. Who don’t even know they have it. So in my case, we always knew that my kidneys. We’re not working, um, you know, to the best of, to the best function that it could have.

So before any of this was happening, because you’re talking about bladder and bowel issues can go with spina bifida depending on, on the individual. Um, so I would assume that that would include like urinary tract infections throughout your life that you’d be facing.

Oh yes. Oh yes, yeah. Chronic UTIs. I still get them. I don’t get them as much, and I’m able to handle them a little bit better. I do a couple things. I do a, like a daily bladder flush to help. Um, that’s not something I learned until just… You know, a couple years ago, unfortunately. Um, but that’s, we don’t know if that was a, a cause for the, the renal failure.

But I’m sure it was a contributing factor because I was getting them left and right. It was, it was almost as if I’d get one, we’d cure it through antibiotic treatment, and then I’d get another one immediately. So, it was just a constant cycle of those.

So that’s, because my thought is that that may be, at least the UTIs may be something that our parents that are listening may be familiar with already if they have an older child with us and just maybe staying on top of things to make sure that the child’s learning how to care for themselves. And knowing what the signs are for that as well.

Yeah, no, if I could just give a few suggestions, and again, this is not medical advice, I’m not a doctor. If you avoid sugar as much as possible, and I know, especially in today’s age, you can’t avoid sugar in everything because there’s a sugar, there’s sugar in a lot of things, if not most things.

Avoid sugar, drink a lot of water, and even my parents are pretty impressed these days. They go, man, you drink a lot of water. Well, I have to. I have to keep the bladder healthy. And especially now after transplant, I want to keep this thing as healthy as possible.

Be as clean as possible when you use the restroom, if you, especially if you use an intermittent catheter schedule, which I do and always have. Uh, and I think that’s what, you know, was a major problem with the UTI. So I always, I always wear gloves. I always use a new clean catheter. For years, I always washed them.

And just try and be as healthy as possible. It, it’s, it’s not a perfect system. I still get UTIs. I do all of that. And I still get UTIs. But they’re less frequent. And, uh, look into bladder flushes as well. And I won’t go into all that, but talk to your doctor about that, as that may be of help.

Good. So it’s, it’s always nice whenever someone’s willing to share maybe the, the not so fun part of having to deal with things.

But I think it’s important that our parents hear this because, you know, again, we’re trying to, to give you ideas of what to ask, what to look for, how, how to help your child become more independent as they get older. This is, this is part of life for a lot, a lot of kids that are growing up right now.

One of the best blessings that I’ve had in my life is that my parents, and my younger sister, I give her credit too, who, she does not have a disability by the way, um, they’ve all helped me and pushed me, and many times too, to be independent.

So, there were times where, you know, Mom, Dad, can you call the doctor? And they said, no, you can though. You know, here’s the phone, or, you know, here’s… Here’s what you say. Here’s what you ask. And, uh, you know, here you go, do it. And it, that was such a blessing for me because that allowed me to grow up and to learn how to handle it myself.

And I know there are a lot of parents out there who are reluctant to do that simply because It’s scary, not only for them to deal with their own child’s health, but to, oh wow, you want me to turn my child’s health over to their own, you know, responsibility? Yeah, if they’re capable of doing it, I think it’s important because you’re not always going to be around.

They need to learn to fend for themselves. Now, I realize that may not be possible for everybody, but I believe that whatever the child is capable of doing, with or without additional assistance, they need to be able to learn to be able to handle some of those things on their own. And that’s, that’s been pivotal in my life. In, in several areas, not just in this case.

I’ve shared the age that my kids are now, but we’ve gone through that process of walking them through, you know, practicing the, the dialogue before they make the call so that they know how to make those appointments, how to. How to set that up. We’re still there. We’re, we’re usually still in the background on speakerphone just in case we need to kind of jump in and give them something else to say.

But, um, but parents, I think that that’s, that’s a great skill that you can pass on to your children as early as they’re able to take part of that. Let them, um, drive those questions, drive, you know, have them maybe make their checklist of questions that they want to ask whenever they’re in the appointment, even though.

Thank you. They may be young and you’re there with them so that they can start learning how to do this. There’s so many areas of advocating for your own needs. And this is one that we don’t talk about much. We, we, we, we talk about with your teachers and with work. But, um, but it’s, it’s, it’s everything. You need to be able to understand what you need and how to get the, the help and how to be able to communicate what your, what your symptoms are, what your questions are.

So that you have that relationship with your, your, uh, medical. Team as well. So thank, thank you for encouraging that. Um, I do want to go back when you were talking about, um, your experiences growing up, you have to say you had a very good social life, um, because you had a lot of experiences starting early and all the way through high school, more than what.

You know, our, our, our typical kids have at times if they’re just shy kids. Um, so I was impressed with that, that, that you didn’t let your mobility stop you from getting involved. Um, but you also talked about sports. Now you, you were in high school, you said that you were, um. Well, going back a little bit, you said in, in, in elementary you would, you would shoot basketball with your friends or, or try, ’cause the, the hoop was pretty high for that , but, um, but then in, in high school, you mentioned that you were helping with the two teams, but what sport was that? Was that, was that basketball as well or was that another sport?

Yeah. My, so my freshman year I was the Varsity boys. I was a student manager. And then the, my sophomore year, I was the girl’s junior varsity, uh, manager.

Okay. And then I saw in your bio that you have worked with, with you sports. Tell me more about that. What have you done since high school now with sports?

Yeah, I have one thing I will mention because this was, this was key in my life too, um, we haven’t talked about this yet. Uh, but for years, uh, close to 20 years, I also played wheelchair basketball. And so there was a local adult team here.

And, uh, I started when I was about six years old. I didn’t play a whole lot for a couple years because they were all much older than me. And they were out there hitting each other and falling out of their chair. And for a six-year-old, it’s pretty intimidating, especially when they’re much bigger than you.

Um, but they were, they were really my first friends when I moved to my, my current town, my hometown, uh, from L. A. And they really showed me what it was like to grow up with a disability. They taught me so much. Um, and so I played for, with them for a long time, just, just casually one day a week. Um, but they really taught me every skill that it took to play wheelchair basketball.

And that really. was my first exposure to not just sitting on the sidelines and watching, or watching on TV. You know, I’m a huge Lakers fan. I grew up watching the Showtime Lakers in the, in the mid to late 80s. Um, but the Rolling Chariots, that was the name of the wheelchair team, they were able to get me out there on the floor and really play for the first time, uh, with, in a way that I was capable of playing with peers, even though they were, again, much older than me.

But, um, But yes, the, the sport that you’re talking about or the experience you’re talking about was my first job out of college. I was hired as the executive director for a youth sports league for kids with disabilities. Uh, and they were, they were primarily, um, disabilities that encompassed, um, Down syndrome, autism.

Things of that nature, but I was, it was exciting for me because I was able to go in there with a background and passion for sports and then having actually studied business and sports management in college, I was able to go in there right away and say, okay, I’m taking what not only is my passion, but what I know in business related to sports and run this organization.

And one of the main projects I was able to achieve at that time was to develop relationships with the local recreation and parks department. And we were able to build one of the first fully accessible baseball fields in the state of California. And that was in 2012. It took a couple of years. Uh, but we were able to do it.

Was that part of the Miracle League program, or was it another organization that you were, or was it just for that Parks and Rec program?

No, no, no. Yeah, so no, it wasn’t a Parks and Rec program. Uh, it was called the League of Dreams, and it’s still in existence. Um, but it’s not affiliated with the Special Olympics.

It’s not affiliated with any other league. It’s its own independent league. And so it pairs up people who are able-bodied, and it’s, we, we tried not to use parents because we wanted the parents And, and the siblings and their families to sit in the stands to be able to have that opportunity to chair, to chair on their kids.

Because most of the time, especially with these particular kids, the parents were always hands on from getting up in the morning until they went to bed and everything in between. They didn’t have a chance to sit back and see their kids doing something. So we always called for volunteers from the community to come out.

And of course we’d do background checks and things like that. And we would pair them up with the kids so they could go out there and play. And then the families would sit in the stands and just have a good time and watch their kids and cheer them on. So it was a great experience for me. And again, that was my first job out of college was being the director of this program.

How long, how long did you work with the, with the, the sports program?

I was there about a year and a half. Now during that time, I was also, so the league was started by a physical therapist in town and he had several locations.

So he was, he was. Quite a large company, at least for our area. And so not only was I the director for the nonprofit, I was also his executive assistant. I was also working in marketing and at one point I was also, um, doing a lot of the, uh, equipment ordering, uh, things like that. So I, I was holding down what it felt like two or three different jobs, uh, as the purchasing agent and marketing his assistant and running the league at the same time.

So it was very busy. And so there came a point where I went and I sat down with the CEO of the company and I said, look, this is too much. I love the sports league, but I think I need to take my career in a different direction. I think, I think I’ve helped set things up in such a way that you guys had this, this field project, this baseball field project that had been sitting there for about three years that I was able to complete for you.

Now I think I need to focus on the business part of it. So I stepped away from the league. focused more on the business side of things with him and the for profit company, the physical therapy part of the company. And then from there I was able to launch my career into other areas.

I’m looking at our time. We probably need to wrap up soon, but I did want to ask you, um, do you have any advice that you want to pass on to parents if they have a child with spina bifida or if they have a child who has a mobility challenge? Um, any, any tips, tricks, anything you, you want to pass on to them?

Yeah. So first and foremost, I would say, and we kind of mentioned it earlier. Get your kids involved in their own life and in their own care. It’s okay, you know, when they’re so young, you know, mom and dad have to take care of everything. But at a certain point, even five, six years old, still pretty young, but start getting them involved with certain things.

Ask them questions. Have them repeat answers that you would expect them to give when it comes to their own care. Know what medications they’re taking, when they have to take them, why that’s important. They don’t have to know all the medical background and details, but they have to know that what they’re doing or why that’s important, in simple terms.

And as they get older, provide more opportunities for independence for them. For instance, uh, my parents set up in, in our kitchen. This is an easy example I can think of. Uh, you know, most, in most kitchens you have all the plates and cups and everything up high. Well, even as an adult, I can’t reach that. So early on, I told my parents, I said, let’s set some things down low for me, even just a few plates, a few cups, you know, things like that, just so they’re mine and I can reach them and I can, you know, get a drink whenever I need to get a drink, you know, or something to eat or whatever.

And so we did that. And then, you know, it grew to where then I had my own set of everything. And then they taught me, okay, well now you have to wash your own dishes. You have to put your own dishes in the dishwasher. And here’s how you do laundry. You have to separate the lights and the darks. And, you know, here’s how you get into a shower chair, you know, to take a shower.

Here’s how you dress yourself. So it was very interactive for a long time. So I grew up with a younger sister. So. You know, we always had our own chores that we could do. Now I couldn’t. I couldn’t do some things like go out and mow the lawn, not to say we didn’t try, uh, in fact, and this is a story my dad and I talk about every once in a while to this day.

We had our little miniature schnauzers way back, you know, when, when I was five, six years old, and there was one day and my dad said, hey bud, come over here, let’s, let’s just try this just for, you know, for kicks, see if it works. So he hooked me up to the lawnmower, just a push lawnmower, and he put the dog leash around my chair and he hooked it up to the lawnmower, and it, it, it didn’t work, you know, the, the, the leash was not strong enough to hold me onto the lawnmower, um, but we tried.

You know, we at least made that attempt to say, Hey, can Nathan mow the lawn? Um, so it was, it was things like that that I couldn’t do, but there were plenty of other things that we found out that I could do and so, you know, living on my own now it’s, you know, I have a gardener, I have to hire a gardener because I can’t go out there and do that, but I’m able to do all these other things and it started from that time in my life and it’s not to say that it wasn’t frustrating.

For both my parents and me, there was, there was a lot of tears, a lot of tears back then. Um, but I’m so glad that we went through that because I wouldn’t be here doing what I’m able to do today. It all started with those fundamentals. I wouldn’t even be here on this podcast with you.

Um, you know, as parents, we have to think outside the box a lot of times. Um, it sounds like your, your dad was one who was, was good at thinking outside the box.

Yeah. And he still is. He, every once in a while, he’ll come up to me and say, buddy, hey, you know, what do you think? I mean, even now, even the last six months, he, he’s, he’s, he’s, he’s Came up to me, he’s come up to visit me in my house and, and, uh, and he’ll say, Hey, you know, what do you think about this?

Why don’t we try and figure out this way or that way? And I’ll go, Oh, okay. Um, something to think about. And sometimes in my mind, I don’t know if it’s going to work, but, uh, I said, okay, you know, let’s just try it. Maybe I’ll be surprised. And sometimes it works and sometimes it doesn’t. But you know, it’s good that we’re.

We’re always trying to figure things out and same thing with my mom, you know I don’t see my mom as often because she lives out of state, but I talk to her every week But when she comes and visits or I go visit her, it’s the same thing. How can we make things work? Maybe a little bit different, you know for me, but how can we make them successful, you know.

Before we finish, um, can you share with us what you’re doing today? What, um, what, what are any projects you have going on? Anything, anything like that?

Yeah. So I am very involved in my community. Um, I’ve been the ADA coordinator for my community, in fact.

Uh, so I’ve learned a lot about the Americans with Disabilities Act. I’ve, I’ve received phone calls from, from people in the community asking questions on, you know, how do we deal with certain situations. Um, aside from that, uh, I’m also starting my own company. Well, in all fairness, I’ve been trying to start my own company for a while.

Uh, it’s called Real Life Speaking or Real Life Coaching. That’s kind of all-in-one encompassing. And so what I like to do is… First of all, I love speaking in front of people, but number two, I like helping either small groups of people or just one-on-one and I’m really focused on helping families and individuals with mobility disabilities and spina bifida and spinal cord injuries who have been or who are where I have been, you know, maybe they’re, maybe they’re young kids and their parents don’t know where to go or where to seek information. And so based upon the experiences I’ve had and the information I’ve gathered from other people, I’m putting coaching programs together to offer these, these families.

Uh, it could be somebody who is a young adult or maybe an older adult even who, you know, suffered a, a tragic, uh, illness or an accident of some sort that put them in a wheelchair. And so maybe they’re having to relearn a lot of things. So, how do they do that? You know, there aren’t a lot of resources out there on organizing the different pieces of information out there.

There’s a ton of information out there, but the information is in so many different places that it can get very confusing and very intimidating on Where do I start? I mean, I, I could Google a bunch of things. I could go to YouTube and look at a bunch of things, but how do I make it work for me? And that’s where my business comes into play.

I want to simplify that information and help them create a plan that works just for them. And it’s not a one size fits all solution because let’s say I’m coaching you. But what works for you may not work for me and vice versa. So, I want to focus on the individual or the family and help them figure out what their barriers are, where their opportunities are, and help them put that plan together to help them become successful.

It sounds, sounds great. Um, and some of our listeners may want to get in touch with you and find out more about that. What’s the best way that they can get in touch with you?

So I have a website and it’s wheellifecoaching.com. So wheel like wheelchair life coaching dot com. And that’s two LSS one L in wheel, one wheel, uh, one L in life wheel life coaching.com.

Uh, and then on Instagram, you can find me at Wheel Life again, two L. Underscore coach. And that’s my handle for Instagram @wheellife_coach.

Okay. And we will put those links in the show notes. So if you’re listening, look, look on Apple or wherever you are, or in the description, if you’re on the video, um, to see, to see those links so they can. Can, can get in touch with you. Thank you so much for spending the time to answer my questions and, um, and to share more of what you’re doing and what your experience has been.

Yeah. Thank you so much for having me. This has been great.

Tonya Wollum

Tonya

Tonya Wollum is a disability advocate and host of the Water Prairie Chronicles podcast which connects special needs parents with resources to help them navigate parenting a child with a disability. She is the mother of 2 college-age children who have each grown up with a disability. That experience, along with a background in education, led her to create the Water Prairie Chronicles to help share what she has learned with parents of younger children to help them know how to advocate for their children.

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